case study of disabled person

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Disability and Health Stories from People Living with a Disability

• Nickole's Story
• Jerry's Story
• Justin's Story
• Suhana's Story

Real Stories from People living with a Disability

Nickole cheron’s story.

In 2008, a rare winter storm buried Portland, Oregon under more than a foot of snow. The city was gridlocked. Nickole Cheron was stuck in her home for eight days. Many people would consider that an inconvenience. For Nickole, whose muscles are too weak to support her body, those eight days were potentially life-threatening.

Born with spinal muscular atrophy, a genetic disease that progressively weakens the body’s muscles, Nickole is fully reliant on a wheelchair and full-time caregivers for most routine tasks. Being alone for eight days was not an option. So Nickole signed up for “ Ready Now! [PDF – 4.8MB] ,” an emergency preparedness training program developed through the Oregon Office of Disability and Health .

“The most important thing I learned from ‘Ready Now!’ was to have a back-up plan in case of an emergency situation ,” she said. “When I heard the snow storm was coming, I emailed all my caregivers to find out who lived close by and would be available. I made sure I had a generator, batteries for my wheelchair, and at least a week’s supply of food, water and prescription medication.”

Nickole said the training was empowering, and reinforced her ability to live independently with a disability. She felt better informed about the potential risks people with disabilities could encounter during a disaster. For example, clinics might close, streets and sidewalks might be impassable, or caregivers might be unable to travel.

Among the tips Nickole learned from Oregon’s “Ready Now!” training are:

• Develop a back-up plan. Inform caregivers, friends, family, neighbors or others who might be able to help during an emergency.
• Stock up on food, water, and any necessary prescription medications, medical supplies or equipment. Have enough to last at least a week.
• Make a list of emergency contact information and keep it handy.
• Keep a charged car battery at home. It can power electric wheelchairs and other motorized medical equipment if there is an electricity outage.
• Learn about alternate transportation and routes.
• Understand the responsibilities and limitations of a “first responder” (for example, members of your local fire department of law enforcement office) during a disaster.

“This training shows people with disabilities that they can do more to triage their situation in a crisis than anyone else can,” she said. “‘Ready Now!’ encourages people with disabilities to take ownership of their own care.”

CDC would like to thank Nikole and the Oregon Office of Disability and Health for sharing this personal story.

Learn about emergency preparedness for people with disabilities »

Jerry’s Story

Jerry is a 53 year old father of four children. He’s independent, has a house, raised a family and his adult kids still look to him for support. Jerry recently retired as a computer programmer in 2009, and competes and coaches in several sports. This “healthy, everyday Joe, living a normal life” has even participated in the Boston Marathon. Jerry also has had a disability for over 35 y ears. In 1976 on December 3 (the same day that International Persons with Disabilities Day is recognized) Jerry was hit by a drunk driver. The accident left him as a partial paraplegic.

Jerry’s life is not defined by his disability. He lives life just like anyone else without a disability would live their life. “There’s lots I can do, and there are some things that I can’t do,” said Jerry. “I drive, I invest money. I’m not rich, but I’m not poor. I enjoy being healthy, and being independent.”

As a person with a disability, however, Jerry has experienced many barriers. Recovering from recent rotator cuff surgery, his rehabilitation specialists “couldn’t see past his disability”, administering tests and delivering additional rehabilitation visits that a person without a disability wouldn’t receive. He once was being prepared for surgery when a nurse proclaimed “he doesn’t need an epidural, he’s a paraplegic.” Jerry had to inform the nurse that he was only a partial paraplegic and that he would indeed need an epidural.

Jerry was in line at an Alabama court house to renew his parking permit and also renew his son’s registration. He watched a worker walk down the line and ask people “what do you need?” When she got to Jerry and saw his wheelchair, he was asked “who are you here with?” And Jerry finds it difficult to go to concerts and baseball games with a large family or friends gathering, because rarely are handicap-accessible tickets available for more than two people.

Jerry has seen a lot in over 35 years as someone living with a disability. He’s seen many of the barriers and attitudes towards people with disabilities persist. But he’s also seen many positive changes to get people with disabilities physically active through recreational opportunities such as golf, fishing and even snow-skiing. There are now organizations such as Lakeshore Foundation – where Jerry works part-time coaching youth basketball and track – that provide recreational opportunities.

Jerry states: “I don’t expect the world to revolve around us. I will adapt – just make it so I can adapt.”

Justin’s Story

Justin was first diagnosed with a disability in the form of ADD (attention deficit disorder, now known as ADHD, or attention-deficit/hyperactivity disorder) at the age of 5 years. The diagnosis resulted in his removal from a regular classroom environment to special education courses. Justin’s parents were informed by Justin’s educators that he probably wouldn’t graduate high school, much less college.

Years later, as a young adult, Justin developed Meniere disease (an inner ear disorder), which affected his hearing and balance. The onset of the disorder left Justin with the scary reality that he could permanently lose his hearing at any time. Justin recalled a former supervisor taking advantage of this knowledge with an inappropriate prank: While speaking in a one-on-one meeting, the sound from the supervisor’s mouth abruptly halted, while his lips continued to move. Justin thought he had gone deaf – until the supervisor started laughing – which Justin could hear. Behaviors like the above took its toll on Justin’s confidence – yet, he knew he could contribute in society.

Spurred in part by adversity, Justin went back to school, earned a business degree, and shortly after, entered the commercial marketing industry. However, despite his education and experience, Justin was still regularly subject to the same stigma. Many of Justin’s work experiences over the course of his career left him feeling ashamed, guilty, offended, and sometimes, even intimidated. Rather than instilling confidence, it left him demoralized – simply because he was differently abled.

In July of 2013, everything changed for Justin. He joined the Centers for Disease Control and Prevention working as a contractor in the Division of Human Development and Disability at the National Center on Birth Defects and Developmental Disabilities. Justin’s colleagues put an emphasis on making him feel comfortable and respected as a member of a diverse and productive workforce. They welcomed Justin’s diversity, positively contributing to his overall health.

The mission of the Division of Human Development and Disability is to lead public health in preventing disease and promoting equity in health and development of children and adults with or at risk for disabilities. One in two adults with disabilities does not get enough aerobic physical activity 1 , and for Justin, regular physical activity is important to help him combat potentially lethal blood clots due to a genetic blood clotting disorder that he has. Every working hour, Justin walks for a few minutes, stretches, or uses his desk cycle. Justin also participates in walking meetings, which he believes leads to more creative and productive meetings.

Stories such as Justin’s are reminders that employment and health are connected. CDC is proud to support National Disability Employment Awareness Month every October. The awareness month aims to educate about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities.

Suhana’s Story

Suhana has a sister, Shahrine, who is older by 18 months. While Shahrine’s mother was pregnant with Suhana, their uncle came to town for a visit. During the visit, their uncle was quick to notice that Shahrine did not seem to be talking at an age appropriate level or respond when called upon. Shahrine would also turn up the volume on the television and radio when others could hear it without difficulty. Shahrine’s parents thought that her speech development and behavior were normal for a toddler, but thanks to the uncle expressing his concerns, the family soon took action. A hearing test found that Shahrine was hard of hearing.

Due to Shahrine’s diagnosis, Suhana received a hearing screening at birth and was found to be hard of hearing, as well. Had it not been for the concerns raised by the children’s uncle, not only would Shahrine’s hearing loss have possibly gone on longer without being detected, but Suhana would most likely not have had a hearing screening at birth.

As a result of their early diagnoses, Suhana and Shahrine’s parents were able to gain the knowledge they needed to make sure both of their children could reach their full potential in life. They had access to early services from a team of physicians, speech therapists, counselors, and teachers.

Suhana credits her parents for her own successes, saying that she couldn’t have made it as far as she has without their support and patience. Today, Suhana is employed at the Centers for Disease Control and Prevention (CDC) as an epidemiologist with the agency’s Early Hearing Detection and Intervention (EHDI) program. All children who are deaf or hard of hearing receive critical services they need as a result of the EHDI program, which funds the development of data systems and provides technical assistance to help improve screening, diagnosis and early intervention for these infants. When children who are deaf or hard of hearing receive services early, they are more likely to reach their full potential and live a healthy, productive adult life.

CDC is proud to support National Disability Employment Awareness Month every October. The goals of the awareness month are to educate the public about disability employment issues and celebrate the many and varied contributions of America’s workers with disabilities.

• Centers for Disease Control and Prevention. Vital Signs. [updated 2014 May 6; cited 2014 October 10] Available from: https://www.cdc.gov/vitalsigns/disabilities/

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Case studies on disability and inclusion.

To document UNICEF’s work on disability and inclusion in Europe and Central Asia region, UNICEF Regional Office for Europe and Central Asia has developed a set of five case studies.

UNICEF takes a comprehensive approach to inclusion, working to ensure that all children have access to vital services and opportunities. When UNICEF speaks about “inclusion” this encompasses children with and without disabilities, marginalized and vulnerable children, and children from minority and hard-to-reach groups.

The case studies have a specific focus on children with disabilities and their families. However, many of the highlighted initiatives are designed for broad inclusion and benefit all children. In particular, this case study, covers such topics as: Inclusive Preschool, Assistive Technologies (AT), Early Childhood intervention (ECI), Deinstitutionalisation (DI).

Case studies

Case study 1: “Open source AAC in the ECA Region”

Files available for download (1).

Case study 2: “Inclusive Preschool in Bulgaria”

Case study 3: “Assistive technology in Armenia"

Case study 4: “Early childhood intervention in the ECA region”

Case study 5: “Deinstitutionalization in the ECA region”

Case study on the effects of a disability inclusive mindset in a large biotechnology company

Journal of Work-Applied Management

ISSN : 2205-2062

Article publication date: 3 September 2021

Issue publication date: 5 April 2022

Employers increasingly seek a competitive advantage through inclusive hiring practices and recruitment of persons with disabilities. Early research indicates when employers consider individuals for their strengths rather than solely for their needs, the organization prospers. However, details about how companies pursue a disability inclusive workplace and the effect of those efforts are poorly understood.

Design/methodology/approach

An inductive qualitative case study approach was utilized to understand one biotechnology corporation and their approach to recruiting, hiring, and retaining employees with disabilities. Individual and focus group interviews were conducted.

Results suggest that when the company lives its mission around wellness and inclusivity, they benefit from working with and learning from a range of perspectives, furthering their growth. Placing equal emphasis on hiring a diverse workforce and prioritizing supports and wellness practices lead to greater productivity and innovation.

Practical implications

This study illustrates how one company successfully recruits and hires persons with disabilities, resulting in benefits to their financial bottom line and to the organizational culture.

Originality/value

This paper offers insights for other companies intentionally hiring persons with disabilities, providing accommodations in the workplace, and creating an organizational culture where all employees feel valued and supported. These steps have a direct impact on employee engagement, productivity, and retention.

• Diversity initiative
• Inclusivity
• Recruitment
• Employees with disabilities

Ochrach, C. , Thomas, K. , Phillips, B. , Mpofu, N. , Tansey, T. and Castillo, S. (2022), "Case study on the effects of a disability inclusive mindset in a large biotechnology company", Journal of Work-Applied Management , Vol. 14 No. 1, pp. 113-125. https://doi.org/10.1108/JWAM-06-2021-0045

Emerald Publishing Limited

Copyright © 2021, Chase Ochrach, Kathryn Thomas, Brian Phillips, Ngonidzashe Mpofu, Tim Tansey and Stacie Castillo

Published in Journal of Work-Applied Management . Published by Emerald Publishing Limited. This article is published under the Creative Commons Attribution (CC BY 4.0) licence. Anyone may reproduce, distribute, translate and create derivative works of this article (for both commercial and non-commercial purposes), subject to full attribution to the original publication and authors. The full terms of this licence may be seen at http://creativecommons.org/licences/by/4.0/legalcode

Introduction

Employers increasingly recognize the benefits to productivity and organizational culture resulting from hiring persons with disabilities (PWDs) ( Lindsay et al. , 2018 ). Approximately 26% of people in the United States live with one or more of six functional types of disability, including cognitive, hearing, mobility, vision, self-care or independent living-related ( Centers for Disease Control and Prevention, 2018 ). Representing just over 25% of the US population, PWDs compose a large and valuable pool of current and potential members of the US workforce. However, PWDs continue to face challenges finding gainful employment in the United States, such that PWDs have an unemployment rate more than twice that of people without a disability ( US Bureau of Labor Statistics, 2020 ).

This lack of representation signals a significant problem of missed opportunity, as disability-inclusive hiring practices have been associated with improved productivity at the employee and organizational level ( Tompa et al. , 2021 ). One potential method of increasing rates of employment for PWDs is by increasing companies' awareness of the how much PWDs can contribute to the workforce, particularly in companies that maintain a disability-inclusive mindset ( Lindsay et al. , 2018 ). Companies with a disability-inclusive mindset go beyond maintaining the minimum legal requirement of anti-discrimination laws to create a disability-inclusive culture in all their thinking, policies, and operations. Such companies proactively focus on making the necessary changes needed to identify and remove barriers to full workplace participation for PWDs, including the removal of physical, communication, and attitudinal barriers ( CDC, 2020 ). This kind of mindset is represented by the concept of customized employment, which encourages organizations to customize the relationship between employee and employer based on the individual strengths and needs of both parties ( Inge, 2006 ). Despite several studies demonstrating the benefits of an inclusive culture and workforce at the individual, organizational, and societal level ( Tompa et al. , 2021 ) a specific roadmap for implementing this type of corporate culture remains elusive.

According to Weick's (1979 ) organizational information theory, people in organizations play active roles as creators of their environment through interpretation of information on a systemic level. Specifically, Weick (1979) emphasized the importance a company engaging in ongoing sensemaking, which is the process of rendering meaning from experience and constructing order out of disorder ( Patriotta, 2016 ). Within a company, sensemaking is a reciprocal relationship, such that individuals both create and are influenced by their organizational environment ( Weick, 1979 ). By focusing on communication from both top-down and bottom-up perspectives within a company, sensemaking provides a method of promoting disability-inclusive mindsets through centralized communication and information processing within a company ( Glynn and Watkiss, 2020 ; Weick, 1979 ). Weick conceptualizes sensemaking as central to organizing around a common mission and goal ( Weick, 2005 ). This theory is utilized in the current study by highlighting how a common organizational mission can allow employees across departments to make sense of their role in the company and of the company's role in the community. By engaging in the sensemaking process, leaders of companies can create a disability-inclusive mindset that influences the company culture on all levels to remove barriers and promote inclusive policy and culture for the hiring and retention of PWDs. Weick's theory applies to this case in that the way the organization and its members make sense and meaning of their work through identifying with the organization's inclusive mission and commitment to diversity. Previous studies have applied Weick's theory to various aspects of organization and management ( Tsoukas et al. , 2020 ), including process research ( Langley et al. , 2013 ) and organizational cognition ( Eden and Spender, 1998 ), among others. We extend findings from these and other previous studies to understand how sensemaking as a process furthers mission-based practices centered on diversity and inclusion.

Companies are increasingly moving to appreciate disability inclusion as a valuable contributor to diversity in the workplace ( Gilbride, et al. , 2003 ; Padkapayeva et al. , 2017 ). Research has revealed that companies identify several benefits to employing PWDs, including an expanded hiring pool, positive psychosocial impacts of retention of PWDs on employees with or without disabilities, and increased diversity of the workplace ( CDC, 2020 ; Lindsay et al. , 2018 ). By modifying recruitment and retention strategies, developing disability inclusion mediations, personalizing workplace and workspace modifications for PWDs, and matching the needs and skills of PWDs with the needs of the company, company leadership and human resources (HR) professionals can create disability inclusive mindsets by creating positive social attitudes regarding hiring PWDs ( Gilbride et al. , 2003 ; Padkapayeva et al. , 2017 ).

Research has also suggested that employee job fit, company culture, and previous employer experience with hiring PWDs all increase recruitment and retention of PWDs, which in turn shapes future HR hiring practices and the assumption of inclusive attitudes and perspectives company-wide ( Gilbride et al. , 2003 ). This aligns with findings that companies that reflect on their own practices, learn from their past organizational choices, and adapt to the internal and external environment are more sustainable in the long-term ( Fam et al. , 2017 ; Fergusson et al. , 2020 ). Additionally, HR employees with a higher degree of social awareness can increase the pace at which PWDs are recruited as well as the pace at which exposure-based disability-inclusive mindsets are encouraged in the workplace ( Chan et al. , 2010 ). This is especially important considering the growing centrality of social consciousness in what attracts new employees to work for organizations, underscoring the overall sustainability of that organization ( Brockhaus et al. , 2017 ; Rimanoczy and Pearson, 2010 ). Employing PWDs tends to decrease employer misconceptions, such as the idea that PWDs are not seeking work or are not qualified for company positions ( Bonaccio et al., 2020 ). Employing PWDs has been shown to increase future hiring and retention of job applicants with disabilities resulting in increased integration of workers with disabilities, development of disability-inclusive workplaces, and more sustainable futures for employees and organizations ( Bonaccio et al. , 2020 ; Fergusson et al. , 2020 ). These and other recent studies illustrate the unique benefits to hiring persons with disabilities, yet few offer a specific roadmap for how to actively recruit and hire PWDs and provide individualized accommodations to allow them, and the organization as a whole, to be successful. The current paper attempts to offer tangible suggestions through the illustration of one mid-sized company's successful implementation of a disability-inclusive mission and practices.

This paper is structured as follows. The first section outlines the methods used in this study, which is an inductive case study of one company's approach to hiring and retainment of PWDs. The organization and its specific subdivisions involved in the recruitment, hiring, and retainment of PWDs are described. The results of the study are then outlined, highlighting the company's mission and values, the actual inclusivity practices employed, and the impacts of these practices. The next section of the paper discusses the main findings of the study and connects those findings to existing research on PWDs in the workplace and general organizational culture. In this study, it was found that recruiting, hiring, and supporting PWDs in the workplace resulted in more workplace diversity, a willingness to provide accommodations for all employees, positive corporate climate, and increased productivity. Thus, this paper contributes evidence in support of the positive impacts of initiatives for hiring PWDs on employees, including PWDs, as well as the organization as a whole.

The purpose of this study was to implement an in-depth case study of a biotechnology company that has expressed commitment to inclusive hiring and retainment and a clear recognition of the company-wide benefits of hiring PWDs. We hoped to understand more about the company's mission and values and how these values translate into policy and action that supports hiring, retaining, and supporting all employees, including PWDs. This study was guided by the following questions: (1) What are the overarching attitudes, values, and approaches taken by this company in their efforts to be inclusive and diverse? And, (2) How does this company extend their message of wellbeing and support throughout all levels and departments of the company?

Given the formative nature of this investigation, we used a qualitative case study design that allowed for exploration of events or phenomena from multiple sources, with the purpose of looking into the unique experience of the people's lives and interactions with the environment ( Corbin and Strauss, 2015 ). This inductive qualitative design allowed for an open evaluation of the complexities and considerations involved in recruiting, hiring, supporting and retaining PWDs through in-depth interviews with multiple staff members at different levels within the company ( Maxwell, 1996 ). Interviews and focus groups were utilized to gain an open, in-depth understanding of employees' beliefs and experiences which was essential to informing our qualitative inquiry ( Gill et al. , 2008 ). As this investigation is exploratory in nature and our aim is to place greatest emphasis on the voices of our participants, a qualitative approach was necessary ( Miles and Huberman, 1994 ). The research team involved in data collection and analysis was comprised of six rehabilitation psychology faculty and doctoral students across three universities in the United States. Team members discussed potential biases prior to engaging in data collection and again before completing the analysis to reduce the potential for biases to influence the results.

Organization

The subject of this study is a large biotechnology company centralized in the Midwest. This company has been recognized as a Great Place to Work-Certified™ company, meaning they have been independently evaluated by the third party and recognized for having a positive workplace culture.

Organizational structure

This biotechnology company was described as using a Matrix Organization style where managerial teams spanned different units within the company ( Galbraith, 1971 ). The HR director noted this as key to maintaining priority on employee retention across all units. Part of the company's success in supporting and accommodating their employees was attributed to the division of responsibility within the company. Rather than processing all accommodations requests through a general HR team, their approach involved multiple specialized teams working together to recruit and retain employees. These included teams focused on (1) Recruitment, (2) Wellness, (3) Leaves and Accommodations, (4) Business Partners, and until recently (5) Security, which aligned under another unit in the organization.

The Leaves and Accommodations team has a lead role in processing accommodation requests while also ensuring that all employees and teams are aware of the potential for accommodations and how to use them. As one employee described, “I did not know until I received that initial email that we do have the entire accommodations team. They can reach out if you need anything.” The Business Partners act as the HR representatives across each unit in the company (e.g., the clinical lab). Business Partners were said by the HR director to play a key role in informing the HR team of needs within a particular unit while also ensuring that the company culture, priorities, and values extends to each unit. The Security team, although no longer part of HR, continue to fill several roles in the company, including acting as first responder for physical and mental health needs. These teams do not want the onus to always be on employees but seek to preemptively act in providing support by assessing potential problems within the company's various departments and teams.

Researchers worked with state employment agencies to identify companies with a reputation for inclusive disability hiring. Once identified as a company of interest, the research team worked closely with leadership from the biotechnology company to organize a site visit and to conduct interviews and focus groups. Prior to the site visit, the research team requested access to any written information, forms, or documents relevant to their disability efforts (e.g., company policies). Key personnel were also asked to provide a few written answers regarding the implementation of practices and policies related to their disability initiative. These were reviewed by the research team prior to the site visit in order to allow for better understanding of company activities prior to conducting interviews and focus groups. Researchers met on the day of the site visit to discuss potential biases and strategize how these biases could be minimized. The present study consisted of interviews with the director of human resources (HR) as well as members of the teams responsible for recruiting and for providing accommodations. A focus group was held with four direct-line supervisors and another with seven current employees, some of whom identified as having a disability that significantly impacted their work. All interviews were conducted in person at the company headquarters in the Midwest. Interviews and focus groups were complimented by information obtained through on-site observation, company policies and other written materials, the company website, and a climate survey described in the measures section below. A tour of the facility with an emphasis on any disability-related environmental adjustments, modifications, or supports helped inform data collection and analysis. The interviews and site tour led to the collection of more written policies and procedures that were added to the materials for analysis.

Focus groups and interviews ranged from 20 to 90 min in length. All interviews and focus groups were completed with two members of the research team present, serving to reduce to the possibility of interviewer bias while also enriching the data collection process with multiple perspectives. Audio recordings of all interviews and focus groups were later transcribed for analysis. Approval from the university's Institutional Review Board was also obtained to conduct this study with human subjects, and informed consent was obtained from all participants.

In addition to the on-site observations of the research team, a climate and policy checklist was used to assess the different disability-related aspects of the company during the post-site visit analysis of data. This checklist consisted of 70 disability-related policies or practices that were marked as being present or not present in the company. The semi-structured interviews and focus groups conducted on-site included primarily open-ended questions addressing the recruitment, hiring, integrating, and retaining workers with disabilities. The interviewees were asked to reflect on the company's practices and policies that were intended to create an inclusive environment for workers with disabilities and the results of these efforts.

Data analysis

All data sources were reviewed and coded by two coders before coming to consensus on the major themes and insights. Interview and focus group transcripts were read by each coder initially and data were categorized into practical and mindset themes. Further categories were determined by grouping data into subthemes, including a focus on inclusive practice, supportive climate, emphasis on retainment, and being mission driven. In the event of a disagreement between two coders, a third coder was included to discuss the item until an agreement was reached. Once created, the coding and narrative of the case study were brought to the larger research team for a community-based approach to refining and improving the accuracy of the case study.

This case study focuses on the inclusive hiring and retention practices of a large biotechnology company and the perceived impact of these efforts. In contrast to many other disability diversity case studies, this was not focused on a disability program but rather on capturing a company culture focused on seeking to make disability inclusivity part of all that they do. Results emerged from data collected over several months of 2019 and include analysis across individual and group interviews as well as on-site observation, the climate survey, and written policies (e.g. employee handbook, Autism Workforce guide). Results are broken down into the following categories: (1) Company Mission and Mindset, (2) Disability Inclusive Practices, which include both hiring and retention practices, and (3) Impact of Inclusive Practices. We proceed with a review of each category and their domains.

Company Mission and Mindset

An overarching theme noted throughout the interviews, whether senior management or recent hire to work in the lab, was the sense of the company's value-driven mission. An internal document describing the company Wellness program provided a Vision Statement that captures the ethos of their mission: “We believe our employees are our most valuable resource and through educating and encouraging the health and well-being of our employees, we in turn can achieve a higher level of patient care.” Throughout every interview and every evaluation of the company's organizational documentation and structure, this mission-driven focus emerged. As a member of the Leaves and Accommodations team stated, “We live our mission statement here, whereas other companies have a mission statement. And it's getting everyone on board from top down to have an environment of support.” Multiple members of the management team noted that this sense of mission did not happen by accident or stem from policy alone but was the result of embedding themselves within departments and consistently communicating those core values. Of their role, one manager stated, “We're out there being that kind of culture keeper.”

The first question a lot of companies will ask is, “Are we legally required to do this?” Which is a fine question. It's a valid question because you want to make sure that you're doing everything legally. But I feel like [company's] first question, because we already know we're in legal compliance across the board for Leaves and Accommodations is, “Why not?” and “What can we do?”

I think it starts with that commitment that we want to be an inclusive workforce, but you cannot always anticipate what that is going to mean for the next person who walks through your door. I think if you're coming at it with that yes mindset … You know if you start there, you can usually find a way to make it work.

You're not asking all of your employees to fit one exact requirement, once you're thinking, “What do they need?” and “How do they learn?” … just the mindset of how to help them be successful here, “What does that mean for them?” That's a real shift from, “I'm the boss, and this is how it works here.”

Disability Inclusive Practices

The mission and mindset of the company produced a number of inclusive practices that could be categorized into hiring, retention or some combination of the two.

Inclusive hiring practices

The director of HR spoke to the company's consideration of community in shaping their hiring practices and performance saying, “We look for partnerships with different organizations, both because we want to be a good partner and because of the organization's being really good conduits for people looking for work.” Another manager emphasized the importance they place on partnering with specific government and non-profit agencies aimed at improving the education and employment of diverse members of the local community and organizations in the area.

Speaking to the inclusive mindset that fuels this biotechnology company, an HR manager spoke of how they work with applicants saying, “whether there's a disability or not, our team approaches these interviews with the same level of fairness and equality. And I think that's become just part of the [company's] DNA.” Part of this DNA, or inclusive mindset, was noted to stem from their resources to work with a diverse workforce. The HR manager continued by saying applicants with disabilities “do not even phase our hiring team now because we are so used to the support we get from our Leaves and Accommodation team.”

Inclusive retention practices

The emphasis on retaining employees was consistent across all collected information. Multiple HR management spoke of viewing employees as being in long-term careers when hiring on with the company. Employees seem to get the message with one stating, “We heard management talk about wanting to create careers,” in contrast to what the employee described experiencing in other companies as being used for a couple of years. Two methods employed for fostering this career mentality were supporting employees in pursuit of upward movement and facilitating employee engagement within the company. Leadership emphasized providing employees with what they need to be successful, including a change in position or environment when needed. An HR director reported the mutual benefit of this approach by saying, “I am a firm believer that culture and engagement of employees has a very positive effect on revenue, on your total growth as an organization. If we were constantly replacing people, that would be a big time and money sinkhole.” He concluded that recruiting for diversity and then “giving them the tools and the support to really be successful” benefits all.

Inclusive retention practices were often very individually based. One frontline supervisor said, “I do not have any accommodation that's exactly like the other. The [Leaves and Accommodation Team] really tailor to the individual.” A member of the Recruitment team emphasized the importance of getting the employee's perspective when addressing accommodation needs stating, “It might not be something that our team is familiar with, but we get familiar with it really quickly.”

creating a welcoming environment and teaching people what it’s like to work here … The first step is really that inclusive culture of teaching and recognizing that people are coming from different places and at different levels of their readiness in order to actually hit the floor for their job.

Regarding supervisor training, an HR director described the Family and Medical Leave Act (FMLA) and ADA training they provide to supervisors, with the comment that “We do not ask [supervisors] to understand all of the intricacies of it. What we do want them to understand through the training is to be receptive.” Multiple supervisors described the trainings with appreciation for their thoroughness and for the support that was available to them, as captured by the supervisor who stated, “There's [a training] for the inclusive workplace, which is wonderful training.” This supervisor continued, “The fact that they even do that is impressive to me.” It was noted across interviews that providing the trainings in multiple formats (audio-video, written, etc.) was appreciated by supervisors and employees with disabilities alike.

The company was noted for taking a proactive approach to accommodations as part of their retention efforts. One employee shared his experience saying, “Because I identified with a disability through the onboarding process, probably within a week or two from hire, I got an email saying, “Hey, you identified with a disability. Are there any accommodations that we can provide?” Another employee described their supervisor's approach to accommodations after having already been with the company, reporting, “When I started in the lab, I never knew how physical that was. It was actually my supervisor that pulled me aside and said, ‘You know, we have accommodations and we can help you through this.’”

Inclusivity as organizational identity: impact of Inclusive Practices

I would absolutely say that it’s a benefit … By recruiting a diverse population and then giving them the tools and the support to really be successful, that goes a really long way towards engagement and culture, and that certainly has direct impact on the bottom line.

Another manager talked of how providing employee accommodations according to their need improved performance and retention. A front-line supervisor spoke of an employee who was about to be terminated for poor performance. In one of the final meetings before termination, the employee disclosed a hidden disability that had been affecting their work performance. Accommodations were put in place and the employee retained their position through strong performance.

Through working with [PWDs], we've found some of the things that we offer would actually be good to offer to a broader population as well. If we are looking at different ways of learning, different ways of training, for instance, even if somebody has not self-identified as having a disability, we all learn differently … Personally, I think that it gives you a more open mindset, things that I had not considered before.

I think there's an effect on morale … We get a lot of really positive feedback about the diversity of our team. A lot of people who choose to work at [company], I find that a big driver behind their decision to work here is because they have a personal connection to our mission. They feel good about working for a company that offers these accommodations for their colleagues and coworkers. They can see people of different abilities working in different ways towards the same mission.

These positive perceptions often connected directly to job satisfaction and a desire to stay with the company. A front-line supervisor said, “I think it helps us retain the employees who truly want to be here … and helps us keep really talented people.” One employee with a disability stated that she is quick to tell her friends and acquaintances to work at this company. She continued, “If you're looking to improve your life, apply.” More seriously, another employee with a disability described being made fun of at her previous company and how refreshing it was to be able to trust that she would be treated respectfully at this biotechnology company. One of the strongest statements on the retention efforts of the company came from an employee who talked of switching from his partner's health insurance for the first time in years because of the stability he felt in his work. He stated with a tone of pride, “I'm actually going to be taking over the insurance because I feel comfortable here.”

Workplace challenges faced by PWDs result from the intersection of individual needs, societal structures, and employer initiatives, policies, and procedures that influence company culture ( Chan et al. , 2010 ). One way to minimize workplace experiences of discrimination and invalidation for PWDs is for companies to actively value diversity and inclusivity in mission, mindset, and policies through organizational sensemaking. By engaging in ongoing sensemaking, companies can allow for individuals to promote disability-inclusive mindsets by both creating and influencing their organizational environment ( Weick, 1979 ; Glynn and Watkiss, 2020 ). The company at the center of this study specifically organizes their work around the central mission of disability-inclusivity and overarching support and accommodations for all—a common mission through which, as was shared in interviews, employees make meaning of their work. As meaning-making is a human-driven process, this study illuminates how Weick's theory of organizational information can explain the practical implications of organizing a corporate culture around a common goal ( Tsoukas et al. , 2020 ). This approach recognizes PWDs as assets as companies provide them with the supports needed to be successful. Such efforts uplift the individual employee and the company-wide productivity and culture ( Lindsay et al. , 2018 ). This company offers a useful model for other companies looking to implement a disability-inclusive approach that values the contributions of all employees.

Organizational culture as a reciprocal process

Interview participants made it clear that this company values a sense of connectedness and reciprocal respect among team members. Weick (1979) suggests that organizations and those belonging to them experience a reciprocal relationship—that is, individuals both create and are influenced by their organizational environment through the process of sensemaking. This proposition suggests that general organizational attitudes (such as prioritizing inclusivity and diversity in the workplace) must be fed through both top-down and bottom-up pathways. Weick further suggests that the way members of an organization make sense of experiences informs organizational action in a recursive process. This sensemaking process is often equally cognitive and emotional ( Mikkelsen et al. , 2020 ) and can stretch from broad, company-wide search for meaning to the minutiae of even the language used by an organization ( Bakken and Hernes, 2006 ).

Using this framework, the company at the center of this study appears to make opportunistic sense of diversity, seeing PWDs as introducing unique skills, perspectives and talents to the company. This sensemaking process is likely driven both by a recognition of the overall productivity and economic benefits as well as employees' emotional investment in the value of working alongside and learning from diverse team members. The development of an organizational culture and mission is more recursive than linear where both meaning and action influence sensemaking and contribute to the ultimate climate ( Glynn and Watkiss, 2020 ). The company as a whole and the individual employees reciprocally influence each other in terms of company values, productivity, and inclusive culture. This organization clearly benefits from such symbolic interactionism, as interviews with employees and management revealed an unequivocal emphasis placed on supporting and being supported by employees with disabilities.

Dedication to morale and community

Staff and leaders both reported a felt sense of community and a dedication to elevating morale throughout this company. It seems that promoting a sense of connectedness and support fosters positive attitudes, productivity, and customer service for this mid-sized organization. Some researchers suggest that leaders can improve productivity, employee relations, and talent development when they align their actions with valuing a diverse workforce ( Hughes, 2016 ). Thus, fostering acceptance, support, and growth for diverse employees is fundamental to prosperous relationships internally and externally for the organization.

Previous findings suggest that high levels of cohesion among members of a group may predict performance ( Gammage et al. , 2001 ). Additional research suggests when a group agrees on the same organizational goals, they subsequently experience higher rates of group drive, cohesion, and productivity ( Greene, 1989 ). This is apparent in the current case, as interview participants reported feeling the congruence with the company goals of commitment to customer service and valuing and supporting team members.

How to replicate elsewhere

It's deciding as a company, “Are you going to be willing to go that much further for the employee to go above and beyond what the federal government is asking you to do?” But it is completely replicable if you desire that for your company.

I think it starts with that commitment to be an inclusive workforce … But you cannot always anticipate what that is going to mean (The next person who walks through your door, what might they need to be successful?). It is not necessarily something that I think every organization wants to do.

The HR director also encouraged companies to think about their employees in terms of their unique value rather than their ability to fit the model of the organizations' values. Overall, this biotechnology company's employees and administrators seemed optimistic about the possibility of their model, philosophy, and approach to hiring and recruitment to be replicated elsewhere. This approach becomes possible through a stance of curiosity, a willingness to learn, and approaching each potential employee as having a unique skillset and worldview.

Conclusions and implications

Intentionally recruiting, hiring, and retaining PWDs in the workplace increases the diversity of perspectives in the workplace and positively impacts the company bottom line;

Successful outcomes from a company-wide diversity and inclusivity initiative results from both top-down and bottom-up implementational commitment; and

Increasing corporate diversity through this kind of initiative has a positive effect on employee attitudes and engagement and the overall corporate climate.

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Acknowledgements

Preparation of this manuscript was supported in part by the National Institute on Disability, Independent Living, and Rehabilitation Research through Grant # HHS-2016-ACL-NIDILRR-RT-0138 to Virginia Commonwealth University, Rehabilitation Research and Training Center on Employer Practices. The opinions expressed herein do not necessarily reflect the endorsement or position of the U.S. Department of Health and Human Services.

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The Man Who Filed More Than 180 Disability Lawsuits

Is it profiteering — or justice?

Albert Dytch uses a wheelchair because of muscular dystrophy. Credit... Balazs Gardi for The New York Times

Supported by

By Lauren Markham

• Published July 21, 2021 Updated June 15, 2023

Listen to This Article

DanVy Vu was out on the floor of her restaurant one chilly evening in December 2019 when a staff member called her to the hostess station to assist an angry customer — a man in a wheelchair who, along with his wife, had been stuck outside. The couple said that they had tried the accessible entrance through a courtyard but found the gate locked, which had left the man shivering out in the cold while his wife circled back to a nonaccessible entrance at the front of the restaurant for help opening the gate.

Vu apologized profusely and looked up their reservation. It showed that they had requested an accessible table. But Vu’s staff was still getting used to a new reservation system and hadn’t seen the note; all the accessible spots were occupied. Vu apologized again and ushered the couple to the hallway to wait. Soon, she sat them at the accessible part of the bar. The couple ate and left.

Vu’s restaurant, Top Hatters Kitchen and Bar, had been open in San Leandro, Calif., for eight months. As a child, Vu used to cook for her family, who resettled to Southern California as refugees from Vietnam, and for a series of boarders who lived with them. A self-taught chef, she ran a food truck for six years after moving to the Bay Area, but the work was taxing. (Vu once posted on Instagram: “Our tired truck broke down so often, one year, we were invited to our repair shop’s company holiday party.”) She dreamed of opening a real, brick-and-mortar restaurant. For three years she saved up and applied for loans until she could afford it.

By the time that happened, Vu was 40. She had lived in San Leandro — a town of nearly 90,000 people that is both more diverse and more affordable than nearby San Francisco and Oakland — for roughly a decade. Vu was determined to open a contemporary yet affordable restaurant that welcomed everyone. In the style of California cuisine, Top Hatters incorporated a variety of influences — her Vietnamese heritage, her husband and co-owner Matthew Beavers’s Italian background. Less than a mile from their home, she found an old milliner shop (hence the restaurant’s name) and started construction on a hip, open-floor-plan restaurant that wrapped around the courtyard with the accessible entrance. “All our savings and dreams and hopes went into it,” Vu told me.

In the spring of 2019, Top Hatters opened to admiring local reviews, and Vu seemed to be on her way. It was when she was assisting the frustrated guest in a wheelchair that she suddenly recalled something she had been told when the restaurant was being designed: that they had to follow the rules “down to the smallest detail” when it came to the Americans With Disabilities Act. In recent years, litigation against businesses accused of violating the A.D.A. has risen sharply, as disabled people demand compliance with a law that has been in effect for 31 years. But some see the cases — many from people who make a practice of routinely filing suits — as a ploy for cash. Vu recalls being told that some people sued businesses “to make a living.”

Three months later, as Top Hatters was getting ready to celebrate its first birthday, Alameda County issued a shelter-in-place order as a result of Covid-19. Vu had to lay off 20 of her 25 employees. To keep the restaurant from going under, she dipped into savings; she also successfully applied for a Paycheck Protection Program loan and qualified for mortgage deferment. Then, in May, Vu and Beavers were served with papers: Someone was suing the restaurant for violations of the Americans With Disabilities Act.

Vu’s instinct had been right. The customer filing the suit was the one from that December — Albert Dytch, a 71-year-old man with muscular dystrophy who has filed more than 180 A.D.A. lawsuits in California. With the support of a prolific lawyer named Tanya Moore, Dytch has sued restaurants, movie theaters, shops and educational institutions.

The complaint against Top Hatters noted the difficulty Dytch faced getting into the restaurant: “Had Plaintiff been alone, he would have been unable to alert anyone that he was trying to get in.” It also claimed that the counter where he was eventually seated wasn’t at a wheelchair-accessible level — “Plaintiff had to reach upwards to reach his drink and food” — and that there was limited clearance behind him. “Someone bumped into his wheelchair, which jostled him as he was eating,” it read. Dytch was suing Top Hatters for $75,000.

To Vu, the lawsuit came as a shock — $75,000 seemed like a tremendous amount to compensate for Dytch’s experience. On the other hand, if Dytch didn’t have a disability, he wouldn’t have faced these barriers — barriers that were not just unpleasant but also, if verified, in violation of federal law. Was Dytch’s lawsuit merely a moneymaking venture? Or was it a necessary demand for justice?

In the United States , people with disabilities are “among the poorest, least employed and least educated of all minorities,” Lennard J. Davis, a scholar of disability studies, has written. They face discrimination in education and employment; difficulty accessing services like transportation and housing; and the high costs associated with being disabled in a society that has been built for people without disabilities and offers a limited social safety net. (Queer people and people of color with disabilities face even more discrimination than their white, straight counterparts.) For much of our nation’s history, a person with a disability in the United States had few civil rights related to the disability at all.

Then, in the 1980s, a bipartisan group of lawmakers — many of whom had close family members with disabilities or were themselves disabled — began agitating for sweeping civil rights legislation, similar to the Civil Rights Act of 1964, on behalf of people with disabilities.

In Congress, skeptics argued that newly specified rights for the disabled would threaten businesses expected to shoulder the costs of making spaces accessible. “Blank Check for the Disabled?” ran a 1989 editorial headline in The New York Times. But proponents said it would be an economic boon that would move disabled people off social-welfare programs and “into jobs, into restaurants, into shopping centers and into community activities,” as the legislators seeking a law wrote in a formal letter to colleagues. Disabled people organized mass grass-roots protests, helping galvanize a pan-disability movement that linked populations who previously considered themselves entirely distinct — veterans who had lost limbs at war along with the deaf, for example — in a common cause.

The Americans With Disabilities Act was signed in 1990 by President George H.W. Bush. Title III of the A.D.A. decreed that all businesses open to the public were required to be accessible and to make “reasonable modifications” to that end. In response to right-wing resistance to expanded governmental reach, those who fought for the A.D.A.’s passage decided against setting up a federal office to monitor or enforce it, the way the Drug Enforcement Administration enforces narcotics laws and Immigration and Customs Enforcement pursues immigration violations. Instead, lawmakers concluded that A.D.A. enforcement should happen through the courts — essentially transferring the role of enforcement from the government to individual disabled people and the judges who heard their cases.

As soon as the bill became law, lawsuits began. A majority of early cases were filed under Title I, related to employment discrimination against those with disabilities (the 1993 movie “Philadelphia,” starring Tom Hanks, was the story of a lawyer who sued his firm under the A.D.A. after being fired for having H.I.V.), and Title II, under which government offices could be sued for unequal access. Soon, though, plaintiffs also began to file Title III cases — those related to physical barriers — against ice-cream parlors, rental-car companies, movie theaters, hotels, private universities and the like. Many won. The A.D.A. was fulfilling its promise of opening access for, and reducing discriminatory practices against, the disabled.

Worried about offering a financial incentive to sue under the A.D.A., lawmakers wrote the law in a way that limits plaintiffs’ ability to collect monetary damages. A successful A.D.A. suit generally ends in injunctive relief — a court’s forcing the violation to be fixed — and the plaintiff’s legal fees being paid in full by the defendant. (A plaintiff can sometimes collect damages if he suffered bodily harm as a result of the access barriers, but this is rare.)

Still, there was — and still is — money to be gained in these suits. The fact that the law requires defendants to cover legal fees can encourage lawyers to sue, and even, critics claim, to drag the cases on for months or years. In fact, the $75,000 for which Dytch was suing Top Hatters was an estimate of the legal and expert-consultancy fees that would be required in his case. Even if a defendant agrees to fix the problems immediately, these cases can require months of legal procedure, expert investigations and mediation sessions, which ratchet up the bill.

While a number of Title III A.D.A. cases were filed in the 1990s, lawsuits increased in the 2000s and rose even more in the 2010s. Word had gotten around that filing Title III A.D.A. cases could help people with disabilities accelerate long-overdue improvements in access. There was another big factor, too: Many states had codified their own versions of the A.D.A., and some of those laws — including in California, Florida, Pennsylvania, Illinois and New York — did allow for financial damages. That meant a lawsuit invoking both the A.D.A. and one of these state laws could result in money for a plaintiff. In 2012, plaintiffs filed 2,495 Title III cases in federal court. By 2017, that had more than tripled to 7,663 cases — more than half of which were filed in California or Florida, whose state laws can be particularly beneficial to A.D.A. plaintiffs.

California is an especially popular place for A.D.A. lawsuits because its separate state law, called the Unruh Civil Rights Act, allows for damages of up to $4,000 each time a plaintiff encounters an accessibility barrier — meaning that a plaintiff can visit an establishment several times, encounter the same barrier and state a claim for each visit. Most disability-related cases in California — including the one Dytch filed against Top Hatters — cite violations under both the A.D.A. and the state’s Unruh Act in a single, bundled lawsuit in federal court.

Of course, most cases settle, with a defendant typically agreeing to fix the violations that the lawsuit surfaced and pay back the plaintiff’s legal fees, generally in the thousands of dollars. In states that allow damages under their disability laws, a plaintiff can also be financially compensated through that process.

A paraplegic man named Samuel Love is known throughout California for filing hundreds of claims, mostly about noncompliant parking at businesses such as gas stations and hotels — violations he is able to find without even leaving his car. In March 2020, Love sued a San Jose store owner named Dong Nguyen in federal court in the Northern District of California, claiming that he “failed to provide wheelchair accessible sales counters.” A judge dismissed the lawsuit after Love missed a deadline for filing paperwork. “They are not customers,” Nguyen told me of serial litigants like Love. “They go around looking for something and sue.” Love’s A.D.A. lawyer, Dennis Price, noted that his clients “very frequently” patronize the businesses they sue and “are customers by any reasonable metric.”

Price works at the Center for Disability Access, a prolific source of A.D.A. suits. Though its name might suggest a nonprofit operation, the Center for Disability Access is in fact a wing of a private law firm called Potter Handy. The firm files thousands of cases each year, many with repeat plaintiffs, including Love.

Another client of Price’s, a lawyer named Scott Johnson, who is quadriplegic, is perhaps the most infamous of serial litigants. This is partly because of the volume of his cases — on occasion he has filed more than a dozen lawsuits in a single day — and partly because he has himself encountered legal trouble, including a federal indictment for failing to pay taxes on hundreds of thousands of dollars he has earned in recent years from A.D.A. settlements. (Johnson pleaded not guilty — his lawyer in that case, Malcolm Segal, contends that Johnson’s settlement money was tax-exempt — and the case is awaiting trial.)

Johnson’s former paralegals have said that he used to instruct them to drive around town looking for violations so Johnson could file suit. At times, paralegals said, he would accompany them, but rarely leave the car. (Price said Johnson was always present when potential violations were identified.) In any given year, Johnson files 300 to 400 lawsuits in California; he has filed thousands over the course of his career. A handful of businesses closed for good following lawsuits: a hamburger joint, a deli, a beloved pool hall. “As for Scott Johnson, he got nothing from me but a closed business,” Mike Murphy, the owner of the shuttered Jointed Cue pool hall, told me. “The heartbreaking part of this is that it’s a staple in the community. It’s a historic place. And that’s gone because of this lawsuit.”

Price noted that a business’s closure after a lawsuit “does not imply causation.” He said that he and his colleagues see their clients as helping to enforce an important law. “These are testers,” Price told me. “They are making sure that California is compliant. They are putting themselves and their time on the line for access.” In 2007, in response to a lawsuit claiming vexatious disability litigation, the United States Court of Appeals for the Ninth Circuit issued an opinion making a similar point: “For the A.D.A. to yield its promise of equal access for the disabled, it may indeed be necessary and desirable for committed individuals to bring serial litigation advancing the time when public accommodations will be compliant with the A.D.A.”

Once Dytch sued Top Hatters, Vu thought it might be over for the restaurant. But she rallied, taking out a loan with a double-digit interest rate, while also borrowing from relatives, to keep the business afloat and pay a lawyer.

She did some research on Dytch and learned that he was a serial filer: “He did this for a living,” she concluded. She was committed to her restaurant’s being accessible to all guests, she said, but to her eye, Dytch’s lawsuit was a ploy for cash. The timing, during a catastrophic pandemic, didn’t help. On some nights, Vu had only six orders, but she needed roughly 50 to break even. “We basically kept it open and running so that our workers would have a job,” she told me. In spite of the generosity she felt from a band of customers who stayed loyal to the restaurant — one even donated $200 from his stimulus check to Top Hatters — she was sinking deeper into debt and growing misanthropic. “For a while there,” she told me, “I just looked at everyone like: ‘You’re going to sue to me. You’re out to get me,’ you know?”

In many accessibility lawsuits, A.D.A. inspectors are hired to take a look at properties and see where they fall short. According to Candice Lui, an inspector who visited Top Hatters, the counter that Dytch had complained about was, in fact, compliant. Lui recommended a few other changes, however, to ensure accessibility: moving a chair and cabinet from the bathroom; using stickers to indicate which tables were accessible; installing a locking mechanism to keep the gate from accidentally closing during business hours. (Dytch said, “I don’t believe the list of recommended changes adequately represents the situation, but confidentiality constrains me from providing a fuller account.”)

To an extent, Vu felt vindicated. “But my lawyer said it’s cheaper and faster to just settle and do what they say than fight it,” she told me. In September 2020, the parties settled: Top Hatters would pay a certain sum and fix the issues that the inspector had found. The terms of the settlement prevent both parties from disclosing the amount. It was less than the initial $75,000 Dytch demanded but large enough that Vu recalls thinking, Well, there goes our tuition money . (Her son was heading to college.)

Afterward, she alerted every small-business owner she knew to hire a consultant to be sure of compliance. “I was like a walking P.S.A.,” she told me. “Everywhere I went, I said: ‘Do you know about this? You have to be careful or this could happen to you!’” She wanted to make sure that everyone had fully accessible, nondiscriminatory businesses — and that they fixed any barriers before they were served with papers.

I wanted to meet Albert Dytch to hear his side of things, so I wrote him a note. He expressed some hesitation: “Most media coverage has been slanted against plaintiffs like me.” He sent me a link to a website he recently created . “The civil rights of those with disabilities are violated every time they’re denied the same benefits and privileges as the able-bodied,” the home page reads. “Yet relatively few have the time, energy, courage and fortitude to insist that these rights are honored and protected in accordance with the law. I invite you to view the situation from the vantage point of someone in a wheelchair.”

To the extent that serial litigation over the A.D.A. has received attention — mostly in local papers and on television — it’s common for litigants like Dytch to be cast as enemies of the small business. In a 2020 law-review article, the lawyer Evelyn Clark wrote, “Media outlets often tell the stories of greedy individuals targeting unassuming small business owners who were unaware of the A.D.A. and their noncompliance (despite the law having been in effect since 1990).”

Clark, who is disabled, points to a segment of a 2010 episode of “This American Life” entitled “Crybabies” — a rare instance of A.D.A. lawsuits receiving national attention — in which a reporter follows a serial A.D.A. litigant around in an attempt to call him on his bluff. “In California, a kind of crybaby cottage industry has popped up around, of all things, the Americans With Disabilities Act,” Ira Glass, the host of the show, said. To Clark’s eye, this kind of coverage distorts the main issue, which is that people with disabilities continue to face significant barriers in getting through their daily lives. She told me that the existing media coverage has been so bad — and, to be fair, the lawsuits so copious — that “people see a person in a wheelchair come into their restaurant and think they’re going to get sued.”

Disabilities, Kim E. Nielsen writes in “A Disability History of the United States,” rub up against the American value of individualistic, self-sufficient grit. People with disabilities are thus often cast as a drain. Serial litigants like Dytch are read as scammers trying to turn a profit.

Eventually, Dytch agreed to meet in his backyard in the hope of offering a different perspective. He lives with his wife, Andrea, in a sweet, one-story cottage in a tree-lined residential neighborhood of Oakland. They had left the front door open for my arrival, and when I walked in, Andrea was readying Dytch to head outside into the chilly spring afternoon, helping him pull his jacket over his arms and draping a blanket across his legs. Dytch wore wire-rimmed glasses and a baseball cap over a thinning head of hair. He greeted me warmly and invited me to follow him outside.

Under the shade of his backyard pine, Dytch told me that in 2008 he attended a muscular-dystrophy support group where an A.D.A. plaintiffs’ lawyer named Tom Stewart made a presentation about disability rights. Stewart also talked about the possibility of seeking legal relief, and Dytch signed up to speak with him. In 2009, he filed his first case. It set in motion what has become almost a second career for Dytch — one that, like most jobs, requires time, comes with a fair dose of stress and offers financial compensation. (Dytch later started working with Moore.) While exact amounts are confidential, Dytch told me that in any case that settles, his share has typically been $4,000 or less — and, in some cases, he has ended up with no financial compensation at all.

Early on, he began to feel that filing these cases helped him find the agency he had lost as his illness progressed. The more limited his mobility became, the more of the world had become closed to him. Restaurants and shops he once frequented and enjoyed were no longer places he could go with ease or at all. He felt he was fighting not just against the difficulties, barriers and humiliations he routinely faces as a disabled person trying to go about his life, but on behalf of a larger community. The work wasn’t easy, though, and its adversarial nature could feel painful. “It’s like being a parking-meter person,” he said. “They don’t thank you.”

From his perspective, it’s not his lawyer who is drawing out the cases but rather the businesses. If businesses truly wanted to be accessible, they would fix the barriers and settle cases as soon as possible, keeping costs lower for everyone (though even this strategy can cost defendants tens of thousands of dollars in settlement and legal fees, as it had for Top Hatters, and more if there is significant remediation needed to fix accessibility barriers).

Dytch’s complaint against Top Hatters explained that he and his wife had gone there to celebrate his birthday. He had made the reservation with a specific accessibility request, and it simply wasn’t met. It was frustrating and demoralizing, Dytch explained to me, to have to ask for special help to get inside. When I asked if he could recall any other details about the evening, he said he couldn’t.

I also asked Dytch about another restaurant he had recently sued. “I think there was an issue with the bathroom,” he said. He stared at the table for a moment, trying to remember. “And there was a problem with the seating.”

In a Google search, I was served an ad by an A.D.A. defense lawyer named Rick Morin. “Albert Dytch Lawsuit,” the ad read. “We Provide Strong & Effective Representation to Help You Take a Stand. Call Now!” Dytch is a marriage and family therapist, and if potential clients search for his name and see Morin’s ad, it could impact his business. Morin, in Dytch’s eye, is using his name to profit from A.D.A. lawsuits. (Morin wrote in an email, “These mom-and-pop businesses cannot defend themselves on their own.”) Dytch told me he created his own website to have somewhere to send people inquiring about the lawsuits and to create a platform for his perspective.

I asked Dytch why, if accessibility is the purpose, he brings lawsuits instead of just writing a letter to a business asking for a fix. The simple answer, he said, is that asking doesn’t work: He has tried again and again, only to go back to a business and see the same barriers in place. The fact is, the A.D.A. functions because it presents a legal threat. Most businesses will pay thousands of dollars to fix their bathrooms or install wheelchair ramps not because it’s the right thing to do, but because they could be sued for many thousands of dollars more for not having done it. “This is a law that exists in the heavens,” Davis, the scholar of disability studies, told me. “It doesn’t work unless you bring a lawsuit.”

At the same time, Dytch told me plainly, “If there weren’t some money involved, I probably wouldn’t do it.” It takes a good deal of his time to bring such suits, not to mention the stress and public exposure of the work. Right before we went outside, Dytch asked his wife to grab a piece of paper he had left on the printer. Now he took it from his coat pocket and slid it across the table to me. “Disability Out-of-Pocket Expenses,” the typewritten document was titled. He had listed estimated costs for a disabled person’s basic needs. One-time expenses included $10,000 for an overhead lift system and $4,000 for an adjustable bed. A wheelchair-accessible van set him back $65,000 (Dytch is on his second) and a power wheelchair, which was partly covered by insurance, cost $10,000 (he’s on his third).

Then there are the annual costs. As Dytch’s mobility worsened, it became more difficult for his wife to provide adequate care, which put a strain on their relationship. “I want to be your wife, not your caretaker,” she told him. This was hard to hear, but he knew she was right, so they hired outside help. Now they spend $55,000 for a daytime caregiver. He expects to have to hire a nighttime caregiver soon as well, because he has been needing to get up more often at night. That could cost another $45,000. Living in this world as a disabled person is costly — emotionally, physically and financially.

“The law is subsidizing me to correct things,” he told me. “Then I earn money to defray the exorbitant costs of being disabled.” Viewed this way, the United States government is not only outsourcing the enforcement of its law to individuals like Dytch, it is also outsourcing the cost of social supports for the disabled to businesses. The Americans With Disabilities Act wasn’t set up to defray the cost of being disabled, though, but to simply ensure access.

Before I left, Dytch led me inside and gave me a tour of his house. In his bedroom, a metal crossbeam was bolted into the ceiling; a hook fastened to the beam could slide from side to side. This was part of the overhead lift system mentioned on the paper he showed me. “I sit in this harness here,” he explained, picking up a set of cloth straps from where they lay on the mattress, “and then this hook attaches to it and helps lift me in and out of bed.” They had installed these beams in the bathroom, too, so he could be lifted onto the toilet and into the shower. The fixtures have made a huge positive impact on his mobility and on his wife and caretaker. But they weren’t cheap.

Dytch told me the pandemic has made him a little hesitant to sue, as he knows businesses are struggling. While he filed several cases, like the one against Top Hatters, for visits he made before government-ordered shutdowns started in March 2020, he hasn’t filed any based on visits he made after that time — his slowest pace since his first lawsuit in 2009: “I have to wrestle with my conscience and my wife,” he said.

Andrea, he explained, has grown more hesitant about lawsuits. She is a compassionate and sympathetic person by nature and is conflicted about them. “I wish that the burden of enforcement did not fall on the disabled themselves,” Andrea wrote to me later. “Yet the help Albert has gotten through settlements has made it possible for us to afford some of the care he needs.” Dytch doesn’t want businesses to suffer, but he also wants to fight for proper access. The question he now has to ask himself, he told me, is “What is the right thing to do, under these circumstances, that causes the greatest good?”

The reason defendants are generally willing to settle A.D.A. lawsuits is that there are, in fact, widespread violations of the law. The A.D.A. includes standards for accessible design, over 279 pages, on specifics including the grade of a ramp, the width of a parking space, the length of a toilet-stall grab bar and the height of a mirror. While some of these details might appear insignificant to a person without a disability, they are there for good reason. “A matter of inches with a mirror might seem minor to some of us,” Davis said, “but for a person of small stature, it means the difference between being able to use the mirror and not.”

Most business owners are not aware of these details. In fact, proprietors of businesses that are sued might have believed they were in compliance — having received signoff by local building inspectors who may or may not be well versed in A.D.A. guidelines — until the lawsuit makes evident they were not. If a plaintiff wins a lawsuit, the defendant will be compelled to make “readily achievable” accommodations — any changes to make their building accessible that don’t come with tremendous cost or effort. Putting in a ramp, for instance, is a readily achievable accommodation, but rebuilding an old elevator shaft so a person in a wheelchair can ride between floors is not, even though the A.D.A. standards call for wheelchair-accessible design.

Top Hatters has survived, but Vu is still crawling her way out of debt. The restaurant has a lot of outdoor tables these days, and she wonders how to ensure that she’s complying with accessibility requirements in that context. For instance, if a heat lamp is blocking one of the paths to a table because a customer requested it, can Vu just return it to its regular spot if someone who uses a wheelchair comes in or should it not block the path in the first place? “I really want things to be comfortable for all our guests, and sometimes it’s hard to know what the rules really are,” she said.

Though Dytch stopped suing while the pandemic kept people homebound and businesses closed, others have not. From March to December 2020, Scott Johnson filed 303 complaints in the Northern District of California. In the same period, Samuel Love filed 56 cases in that district. Both continued strong into 2021 — often filing multiple cases a day.

Lately, Love has been filing cases against hotels that he claims have failed to adequately describe the details of their A.D.A. accessibility measures on their websites. These lawsuits are part of a genre of A.D.A. case that is well suited to the pandemic because they can be filed without a plaintiff’s ever leaving home. Guidance from the United States Justice Department deals with accessibility in online reservations systems, but there have been disputes over how to interpret it. Philip H. Stillman, a lawyer hired by Marriott International and a consortium of independent hotels to defend them against such lawsuits, contends that the guidance requires online reservations systems only to list accessibility features in broad terms. Specifying that a room is A.D.A.-compliant should be enough. Price, the Potter Handy lawyer, argues that the guidance is vague and its implications unclear.

“Again, my clients — they are advocates,” he told me. The suits he brings, Price emphasizes, are often intended to open up more accessibility in the future. His firm once helped plaintiffs bring suit against several car dealerships for failing to provide hand controls to allow people with mobility impairments to test-drive their cars. In 2017, the Ninth Circuit ruled in favor of the plaintiffs, concluding that offering hand controls was a “reasonable modification” under the A.D.A. Because of this legal precedent, dealerships began keeping such technology on hand, meaning people with physical-mobility challenges are able to test-drive cars more easily in California as a direct result of these suits. Price is hoping the same will be true of hotel websites in the future.

I visited San Francisco’s Handlery Union Square Hotel, which had been included in the recent flurry of lawsuits regarding website listings. Jon Handlery, whose grandfather started the business in 1928, now owns it with his children. He met me in the parking garage and led me through the empty hotel. The Handlery closed and laid off nearly all its staff in April 2020 because of the pandemic and reopened only recently.

Handlery emphasized to me how badly he wants to do right by disabled people. They are customers, after all, and keeping any customer happy is good business. The hotel has been sued four other times for various disability violations and never by anyone who has actually stayed there. At this point, he sees these lawsuits as a cost of doing business — and he knows that, even if he believes a case is frivolous, it’s better to just quickly settle the case than to rack up legal fees trying to fight it and risk losing big. But the hit is extra hard in an industry that has been eviscerated in the past year.

So far, none of the hotel lawsuits have been decided in favor of the plaintiff, but a vast majority are still pending. In June, the case against the Handlery was dismissed by a federal judge. Stillman, who represented the hotel, is among those who believe lawyers bringing these suits are after money, not justice. “Think about it,” he tells me. “You file the same exact complaint 200 times, and each one you’re seeking attorney’s fees of $25,000.” Even if the 200 suits settle for, say, $5,000 each, Stillman says, “that’s a lot of money for doing nothing.”

The trouble with accessibility litigation is that the discussion always seems to boil down to money. Frequently left out is the role of the government. If the federal government truly prioritizes disabled people’s needs, defendants and lawyers told me, perhaps it should help offset the costs for small businesses to improve their accessibility. At the very least, they said, city and county building inspectors should be better versed in the A.D.A. and ensure compliance upon inspection, thereby taking some of the burden off the disabled to act as enforcers.

But what to do about truly vexatious litigation — if it’s even possible to parse the genuine from the frivolous? When there is lawyer profit to be made from these cases, as the law professor Helia Garrido Hull wrote in a 2016 article in The Cornell Journal of Law and Public Policy, “money is diverted away from the real need — correcting the underlying violation that justified the lawsuit and providing the disabled plaintiff with equality and accessibility.”

Defense lawyers I talked with spoke of the need for a “curing period” — a set amount of time after a case is filed during which a defendant can fix any problems, thus ending the lawsuit. The lawyer Evelyn Clark is in favor of a curing period, pointing out that lawsuits can last months or even years before a barrier is remedied and that this would significantly speed things up.

Many disability-rights activists, however, oppose curing periods. Davis believes they would disincentivize businesses from doing anything about a known violation unless a lawsuit is filed. Another option, he suggests, is for bar associations to sanction lawyers who have been found to file frivolous suits. Repeat litigants could be subject to some kind of judicial review. There could also be more oversight of the fees that plaintiffs’ lawyers charge defendants after a successful case, to ensure they are not excessive.

In the United States, one in four people lives with some form of disability; around the world, one billion people do. For now, that is. When the House version of the A.D.A. was introduced, Major Owens, of New York, said, “When you think about it, our entire country is made up of disabled people and temporarily able-bodied people. The people we are protecting are not a mysterious, distant ‘them’ but rather ourselves.”

As someone who could once move around the world much more freely, Dytch is less willing to swallow the indignities of being denied access than he might have otherwise been. When he created his website, he chose the hummingbird as a kind of mascot. He became enraptured with the bird after a friend traveled to Costa Rica and came home bearing photographs of all the different species she encountered.

“I admire hummingbirds for their intense vitality, their breathtaking beauty and their exquisite grace,” he writes on his website. “They’re the only birds with the ability to fly in all directions, including backwards and sideways. Hummingbirds can go practically anywhere.” In this way, he told me, they are hyper-abled; the whole world is wide open to them. “I don’t expect to turn into a hummingbird anytime soon,” he writes. “In the meantime, I’d settle for the ability to go anywhere most able-bodied people can go and do what most able-bodied people can do.”

Lauren Markham is a fiction writer, an essayist and a journalist who focuses on youth, migration, the environment and her home state, California. Balazs Gardi is a photographer who splits time between San Francisco, Los Angeles and New York and is known for creating long-form, immersive projects that explore the tensions between people and their environment.

An earlier version of this article referred incorrectly to A.D.A claims filed in federal court. It is not the case that $75,000 was the minimum demand claim needed to get Albert Dytch's case into federal court. The article also misstated the amount of Dytch's expenses that were covered by insurance. Dytch paid $10,000 for his power wheelchair out of pocket; the remaining cost was covered by insurance; it is not the case that only $10,000 of his accessibility expenses were covered by insurance. 

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Coercive Control

Case study 4: Maria

Download the whole case study as a PDF file (515KB)

Maria is 24. She had a diving accident when she was 20, and now uses a wheelchair due to a physical disability. She has a 15-month old daughter, Sophia, with her long term partner, Graham. Sophia was recently subject to a referral to children’s services, who have contacted Adult Social Care to see whether they might be able to provide support to Maria. Graham is reported to not be happy about this.

This case study considers issues around survivors with physical disabilities; multiagency working, adult safeguarding and child protection; and support to EU migrants.

When you have looked at the materials for the case study and considered these topics, you can use the critical reflection tool and the action planning tool to consider your own practice.

Case details

Download the case details as a PDF file (211KB)

Maria, 24, lives with her 15 month old daughter, Sophia, and Sophia’s biological father, Graham (34). Maria came to live in London from Greece at the age of 18. Maria’s teenage years were difficult as her father was emotionally and physically abusive towards her and her mother. Maria took a business studies course and was involved in the University Diving club. She met Graham at the club and they have been together ever since.

When she was 20 equipment failure during one of the dives caused Maria to sustain a spinal cord injury. Maria was rehabilitated from hospital. With professional support she was able to regain much of her independence although she suffers from chronic pain as a result of the injury, and anxiety and depression related to this. She uses a wheelchair and was allocated an accessible ground floor flat owned by a local housing association. Maria was advised that giving birth could further disable her but she was determined to have her baby.

Graham moved into Maria’s flat when she told him that she was pregnant. Shortly after this she cancelled her contract with the domiciliary care agency. She said that Graham was able to do everything that she and the baby would need. Graham took time off work to be present at every ante-natal class. He works full time at a race track. He sometimes has to work late and he doesn’t always know until he gets there how long the shift will be.

There has been a referral to adult services from children’s services. Children’s services have been alerted to concerns raised by health staff about Sophia’s lack of development, low weight and being frozen in her emotional responses. Maria is reported to seem tired, wary and dishevelled and potentially in need of social care support to be an effective parent. The housing association had had complaints from neighbours about the family’s dogs’ waste covering the shared ‘play’ area and that they seemed dangerous. Graham is reported to be offended at the idea that they are not coping as he now manages the household as well as working.

In this section are two downloadable PDFs – one is a partly completed assessment form related to this case study, and another is an example of what a completed form could look like.

Suggested exercise

Download the partly completed assessment as a PDF file (493KB)

Download the completed assessment as a PDF file (497KB)

Use the partly completed assessment form:

• What actions would you discuss with Maria to ensure her immediate and longer term safety?
• What precautions would you need to take to avoid putting her at higher risk of harm?
• What is your analysis of the situation? Is coercive control occurring? What is the evidence of this?
• What is your conclusion?

Download the blank DASH_RIC as a Word .doc file (226KB)

The purpose of the DASH risk checklist is to give a consistent and simple tool for practitioners who work with adult victims of domestic abuse in order to help them identify those who are at high risk of harm and whose cases should be referred to a MARAC meeting in order to manage their risk. If you are concerned about risk to a child or children, Safe Lives recommend that you should make a referral to ensure that a full assessment of their safety and welfare is made.

There are two downloads on this page.

One shows a blank DASH risk checklist, with quick start guidance from Safe Lives. The key point is to remember that your professional judgement is key in making a decision about risk; a tool can help, but the score it comes out with is not definitive.

This is especially relevant when working with people with care and support needs, for whom some of the questions may not be relevant.

Download the case study DASH-RIC as a PDF file (206KB)

The other shows an example of a completed DASH relating to this case study, for you to critique and appraise.

Suggested exercise:

• Read the case details and full assessment document for this case study.
• Using the information contained, fill out a blank DASH risk assessment tool.
• Discuss how you found it; did you have all the required information? Would you be able to get all the required information in practice? Would you make a referral to MARAC?

This section picks out three main topics from the case study featured. For Maria’s case study, the topics include:

Working with survivors with physical disabilities

Multi-agency working, adult safeguarding and child protection, support to eu migrants.

A selection of references, tools and further reading for each topic is below.

Studies focussing on domestic violence and the experiences of women with physical disabilities draw from survivors’ narratives that illustrate increased vulnerability to coercion and control:

‘ I mean, what normal wife would have all these professionals coming to the house and putting their hands all over her? All in the line of duty, but still—my body was for him alone . . .’ Bethany, a 36-year-old woman with multiple sclerosis, felt that her disability was an imposition on her husband; as a result, she felt obligated to sacrifice her home-based physical, speech, and occupational therapies … Bethany could not heal her disabled body; instead, she tried to limit its influence by surrendering her medical care. However, the abuse only escalated.’ (Rich, 2014:6) .

Findings from research:

People with care and support needs are at higher risk of domestic abuse and other forms of abuse:

• Disabled women are twice as likely to experience violence as non-disabled women. (Hague et al, 2008)
• Half of disabled women may have experienced domestic violence. The report criticises the ‘serious lack of research in this country on the experiences of disabled women survivors of domestic violence’ (Hague et al, 2007)

Less service provision:

• Domestic abuse services – are few and far between, with scarce resources whilst awareness of disability is often inadequate
• Disability services – domestic abuse is often not seen as an issue with a lack of training & information about domestic violence amongst staff compounded by a similar lack of resources. (Hague et al, 2008)

In conclusion, people with care and support needs are more vulnerable to domestic (& other forms of) abuse AND less likely to have access to the services and the protection that may be needed.

Violence and abuse – what can I do? Information for disabled or Deaf women : http://women-disabilities-violence.humanrights.at/sites/default/files/reports/gb_brochure_for_disabled_women_and_deaf_women.pdf

See tools, below:

• Tool 1: Safety Planning checklist for professionals
• Overarching tool on Making Safe Enquiries.  
• Case study 4 Tool 2: Social Work Capabilities in Working with Disabled Women Survivors

Home Office Statutory Guidance highlights perpetrator behaviour which preys on the victim’s fear of losing their child and using such threats as a means of coercion and control:

‘A victim may be fearful of their children being taken away if they make a report and the perpetrator may have tried to convince them that this is the case ‘  (point 23: Home Office Guidance) .

Because of their condition mothers with physical disabilities and/or learning disabilities may be particularly fearful of losing their child to the abusing partner or of losing their child into the care of the local authority. In such instances the perpetrator, as carer of both the adult and child/children, can use coercion to heighten this fear. Communication between Children’s and Adult services is crucial when situations of coercion and control involve elements of both child and adult safeguarding, requiring both adult and child assessments. Here is one example of a joint policy on working with adults and children experiencing domestic abuse:

Working_Together_To_Safeguard_Adults_and_Children_from_Domestic_Abuse.pdf

In seeking to establish robust and regular channels of communication between agencies, Professor Marianne Hester devised the Three Planet Model which highlights the need to align the Domestic Violence planet (where the perpetrator’s behaviour is considered a crime and therefore involves criminal justice professionals), the Child Protection planet (which resides in the public and family law arena involving statutory child protection professionals and NSPCC), and the Child Contact planet (the private law arena involving CAFCASS professionals who consider the child’s right to contact with both parent/perpetrator and parent/DV survivor):

http://www.bris.ac.uk/news/2009/6703.html

Adding a further planet to the constellation – the ‘Adult Social Care’ planet – highlights the need for additional communication channels between Children’s and Adult services and Adult services and Adult safeguarding professionals:

• Tool 3: The Four Planet model
• Tool 4: Family Model for Assessment
• See also: Topics and tools from Case study 5 (Betty) relating to using MARACs.

It is important to look at other structural issues that put people at risk alongside consideration of their care and support needs (see Intersectionality topic, case study 1 ). A number of reports signal a rise in hate crime towards EU migrants including attacks against their homes which, in their current situation, Maria and Sophia could find it difficult to escape from or to seek help:

Corcoran and Smith (2016) Hate Crime, England and Wales 2015/16

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/559319/hate-crime-1516-hosb1116.pdf

The increase in hate crime in England and Wales after the EU referendum vote was reported in figures published by the National Police Chiefs’ Council (Oct, 2016) showing a 49% rise in hate crime incidents to 1,863 in the last week in July 2016 when compared with the previous year. The week after saw a record 58% increase in recorded incidents whilst later data showed that the increase in hate crime continued, although the level of increase then dipped.

In September 2016 The Guardian reported:

‘Sir Bernard Hogan-Howe, the Metropolitan police commissioner, told a hearing at London’s City Hall in September 2016 that hate crime was showing signs of decreasing after the sharp rise in June and July, but it had still not returned to pre-referendum levels… He added: ‘The absolute numbers are low, but we think it is massively under-reported [crime]. Sadly, people don’t tell us about the harassment and the abuse that we know will go on out there.’

Sophie Linden, London’s deputy mayor for policing, who was hosting the hearing, said she was still getting daily reports about hate crime in the capital. ‘It is worrying that it does not appear to have gone back down to pre-referendum levels.’

A survey by the Guardian found that  European embassies in Britain had logged dozens of incidents of suspected hate crime  and abuse against their citizens since the referendum:

https://www.theguardian.com/society/2016/sep/28/hate-crime-horrible-spike-brexit-vote-metropolitan-police

• Tool 1: Checklist – Developing safety plans with adults with care and support needs experiencing domestic abuse

Professionals advising adults with care and support needs (referred to here as ‘adults’) and managing safety plans should follow the checklist of actions.

Tool 2: Social work capabilities in working with disabled women survivors

This tool is based on the recommendations drawn from disabled women’s suggestions for improvement in practice in Hague et al’s paper ‘Making the Links’ (2014: 26).

We have mapped the women’s seven suggestions to the domains of the Professional Capabilities Framework, and added our own suggestions on domains 6 and 9.

Tool 3: The four planets model

Based on Marianne Hester’s Three Planets model; with the addition of a fourth ‘planet’, Adult Social Care.

Consider all the different agencies who might be involved in a case like Maria’s.

Tool 4: Family model for assessment

You can use this tool to help you consider the whole family in an assessment or review.

Tool 1: Checklist - Developing safety plans with adults with care and support needs experiencing domestic abuse

Download the tool as a PDF file

  Professionals advising adults with care and support needs (referred to here as ‘adults’) and managing safety plans should:

• Establish how the survivor can be contacted safely and seek their permission to pass this information onto all professionals in contact with them
• Establish the location of the perpetrator, if separated from the adult
• Establish if the perpetrator is the adult’s carer.
• Obtain the survivor’s views about the level of risk
• Determine methods to facilitate any existing child contact arrangements safely
• Ensure that the survivor has the means to summon help in an emergency
• Identify where a survivor might go if they have to leave quickly and what they will take with them
• Encourage victims to report all incidents to the police or other organisations that will record the incident and maintain accurate and detailed records
• With their permission, refer the survivor to organisations that provide specialist support and advice
• Refer the case and details of the safety plan to a Multi-Agency Risk Assessment Conference (MARAC) in cases identified as high risk
• Encourage the victim to seek professional advice about legal and financial matters and child contact
• Inform survivors of criminal or civil law provisions which may be applicable, e.g., restraining or non-molestation orders
• Make survivors aware of the potential pitfalls of social media use, e.g. identifying current location through status updates/geo-location systems on smartphones which automatically update to publicly display current location
• Consider that victims with insecure immigration status, from minority ethnic communities, victims with disabilities or from socially isolated communities may fear contact with the police
• Where appropriate and safe to do so, involve the survivors’ friends, family or neighbours in the safety planning process where appropriate and safe to do so
• With permission, involve others professionals in the plan such as support workers, GPs, drug and alcohol services, mental health workers, schools etc.
• Encourage the survivor to keep a diary (where you have established it is safe to do so).
• Assess whether the adult has the mental capacity to make informed choices about how to protect themselves.
• Consider coercive control and the new law. Consider if there is evidence of this – i.e. isolation, control, intimidation, financial abuse.
• If you are aware that the adult is accessing other support services, consider who is offering specialised support for domestic abuse.
• Be aware of safety and confidentiality particularly around sensitive documentation for the survivor.
• Where the perpetrator is a caregiver, discuss how the survivor could continue to maintain their independence if they were to cease contact with the perpetrator.

Click to open the image full-size

Download the tool as a PDF file (577KB)

Domain 1        Take advice from, and consult with, disabled women.

Domain 2        Take disabled women seriously and avoid being patronising.

Domain 3        Develop accessible services.

Domain 4        Do not threaten disabled women with institutionalisation if no refuge space is available. Develop good accessible alternative accommodation, both temporary and permanent, plus support to use it.

Domain 5        Be informed about disabled women’s needs.

Domain 6        Critically reflect on power relationships and intersectionality.

Domain 7        Provide accessible well-publicised domestic violence services (including refuge accommodation) that disabled women know about.

Domain 8        Develop disability equality schemes and reviews with input from disabled women.

Domain 9        Contribute to the learning of others who are working with disabled women survivors.

Hague, G et al (2008) Making The Links; disabled women and domestic violence . Bristol: Women’s Aid.

Download the tool as a PDF file (490KB)

Below is an illustration of Marianne Hester’s Three Planets model; with the addition of a fourth ‘planet’, Adult Social Care.

What different perspectives and priorities do they bring?

You can use this tool when working with someone with care and support needs to discuss with them the agencies that can most usefully contribute.

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Hague, Gill; Thiara Ravi K; Magowan Pauline; Mullender, Audrey (2008) Making the Links: Disabled women and domestic violence: Summary of findings and recommendations for good practice. Women’s Aid

Hague G Thiara R and Magowan P (2007) Disabled women and domestic violence: Making the links. An interim report for the Women’s Aid Federation of England . Women’s Aid

Rich, Karen (2014) My body came between us: accounts of partner-abuser women with physical disabilities. Journal of Women and Social Work , 1-16.

Woodin S, Shah S, Tsitsou L (2014) Access to specialised victim support services for women with disabilities who have experienced violence. University of Leeds. Available online:  http://women-disabilities-violence.humanrights.at/sites/default/files/reports/empirical_report_uk.pdf

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Accessibility in Public Open Spaces for People with Disability: A Case of Patan, Nepal

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• Sebi Nakarmi 5 &
• Sudha Shrestha 5  

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631 Accesses

Nowadays, there is rising attention on local, national, and international levels, toward accessibility for everybody to partake in social and communal life. Studies have found that when certain groups of people or individuals are excluded from built environment, discrimination takes place and opportunities for social integration are lost. As a result, accessibility in built environments is crucial for a variety of reasons. The objectives of the study are to examine the current status of public open spaces in the urban context of Nepal, through detailed observations of accessible provisions in the study area. The areas selected for empirical study are the historical urban core of Patan Durbar Square and its peripheral open spaces such as Jawalakhel, Pulchowk, and Lagankhel. The research employs access audits to analyze the conformity of the design with the accessibility guidelines provided by the UN Design Manual. The study’s findings suggest that the majority of the public open spaces in Patan do not meet the accessibility requirements to satisfactory extents. The access audit indicates that accessibility is not well-integrated into older public open spaces whereas newer constructions have incorporated accessibility into their designs to some degree. The performance elements fell between 83.72 and 53.49% short of guideline requirements. Based on these findings, the local administration and the community need to work toward providing more public infrastructures which are suitable for people with disabilities. This study could be a road map for managers, planners, architects, and engineers for the design of safe and inclusive public open spaces.

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UNESCWA (2004) Accessibility for the disabled—a design manual for a barrier free environment. United Nations Economic and Social Commission for Western Asia

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Acknowledgements

I would like to extend my sincere thankfulness to Prof. Dr. Sushil Bahadur Bajracharya, Prof. Dr. Sanjaya Uprety, and Assoc. Prof. Dr. Ashim Ratna Bajracharya from the bottom of my heart for their insightful criticism, which significantly improved this study. My profound appreciation to the department’s teachers for always providing helpful guidance, support, and assistance. I owe my batchmates, who have been incredibly encouraging all through the entire study period, a debt of gratitude. Above all, I want to thank my parents for their invaluable moral support, motivation, and affirmations over the course of this study.

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Nakarmi, S., Shrestha, S. (2023). Accessibility in Public Open Spaces for People with Disability: A Case of Patan, Nepal. In: Mostafa, M., Baumeister, R., Thomsen, M.R., Tamke, M. (eds) Design for Inclusivity. UIA 2023. Sustainable Development Goals Series. Springer, Cham. https://doi.org/10.1007/978-3-031-36302-3_18

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Case studies collection 2019. inclusion of persons with disabilities in humanitarian action.

 - December 3, 2019

Marking the International Day of Persons with Disabilities, the  international Disability alliance is pleased to share with you the  report “Case studies collection 2019. Inclusion of persons with  disabilities in humanitarian action”.

Jointly developed by the International Disability Alliance, CBM and  Humanity and Inclusion, the report collects 39 examples of field  practices inclusive of persons with disabilities in humanitarian  context and disaster risk reduction (DRR), from 20 countries of  intervention. The report is published as a support to the uptake of  the IASC Guidelines on Inclusion of Persons with Disabilities in  Humanitarian Action and it aims to promote learning by example.

The case studies included in the report focus on:

• Inclusive disaster risk reduction and preparedness, showing how DRR  and preparedness benefit by ensuring access and participation to  persons with disabilities and organizations of persons with  disabilities (OPDs).
• Collecting and using disability disaggregated data for assessments  and programming, such as through participatory research and rapid  assessment studies on the situation of persons with disabilities  during and after disasters.
• Participation of persons with disabilities and their representative  organizations in humanitarian response and recovery, including  projects led by OPDs, or done in collaboration between NGOs and OPDs.
• Removing barriers to access humanitarian assistance and protection  though projects in which persons with disabilities and OPDs are at the  center of assessing and addressing those barriers, and examples of  humanitarian actors seeking external technical support.
• Influencing coordination mechanisms and resource mobilization, such  as through disability-focused coordination mechanisms, as well as by  influencing national Humanitarian Response Plans and pooled funding.

The publication has been supported by the Australian Government and  the European Union Humanitarian Aid. Download the publication here.

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• Case Studies

The following three case studies illustrate common problem types that ACDL has worked on for people with disabilities in New South Wales. All case studies have been de-identified.

CASE STUDY 1 – Assistance Animals

Maria has diabetes, depression, anxiety, agoraphobia and chronic back pain. Two years ago, her GP recommended that she get an assistance dog to assist with her disabilities. Maria has trained her dog to be a diabetic alert dog, so he can let her know if her blood sugar is crashing, and she also finds that her dog greatly assists her with her other disabilities via companionship, increased physical movement and general comfort.

Maria bought an apartment in a strata complex last year, and notified the strata manager that she had an assistance dog. The strata manager said it shouldn’t be a problem but she would need to submit an application to the body corporate. She did so prior to moving in and provided supporting documents from her doctor highlighting how the dog alleviated her disabilities. She also provided information on the level of training the dog had been given. However, the Strata manager said she could not keep the dog as she had not provided sufficient information about his accreditation, and therefore Maria had to be apart from her dog for some months.

After obtaining documents and consider Maria’s matter, ACDL wrote a letter to the Strata manager on Maria’s behalf, explaining that her dog satisfies the requirements disability discrimination legislation as the dog is trained to alleviate her disability and trained to an appropriate standard in a public place, and that Maria would be bringing her dog onto the property as at that date. Maria was then able to bring her dog onto the property with confidence.

CASE STUDY 2 – Education

Omar is a 13 year old student in Year 7 at a public school. He has autism, ADHD, ODD and anxiety, and has a behavioural management plan in place. Due to his disabilities, he often acts out in a silly or joking manner, including swearing, and he often lashes out physically when distressed, which is why his behavioural management plan focuses on ways to calm him down. The school follows a strict discipline policy for anything that is seen as misbehaviour: any student who swears or engages in any physical altercation of any level is automatically suspended for 2 days, and progressively longer suspensions occur for each new breach of behaviour.

Omar experienced increasingly long suspensions throughout year 7 for minor incidents of physical altercation with other students as a result of bullying, firstly for 2 days, then 4 days, then 5 days, culminating in a 20 day suspension for appearing to threaten a teacher. The teacher and other students interpreted this as clowning around rather than a genuine threat and the situation was quickly defused. The incident was not even mentioned by his teacher to his parents until the suspension occurred some days later. His mother repeatedly requested that the discipline and suspension policy be amended to take into account Omar’s tendency to act out inappropriately, and institute alternative forms of discipline in accordance with his behavioural management plan, such as detention or similar. The School did not do so, and after the last long suspension, Omar was again found to be misbehaving and was threatened with expulsion.

ACDL wrote a letter of advice to Omar’s mother on the prospects of success of a claim of disability discrimination, noting that there was a strong case of indirect discrimination in the School’s treatment of Omar’s in relation to the discipline policy, in that he could not comply with the discipline policy because of his disabilities, and the School had failed to make reasonable adjustments which would accommodate his disabilities despite repeated requests. ACDL explained the process and options for making a discrimination complaint, as well as providing referrals for assistance with challenging the procedural decision to expel him on other grounds. Omar’s mother said that she found the advice very helpful and allowed her to consider all her options clearly.

CASE STUDY 3 – Employment

Danielle was diagnosed with Hepatitis C. She worked at an accounting firm and did not tell them about it when she got the job. She was worried about what they would think and she did not think that her diagnosis would affect the way she did her job.

One day, she told a close workmate. When she came to work the next day, she found that her workmate had told other people. After lunch, there was a note on her desk calling her a ‘druggie’.

Danielle was really upset. After a few days, she decided to ask for a meeting with her employer to tell her what had happened. Danielle’s employer seemed shocked to hear about the behaviour of the others but was worried that if he said something it might cause conflict within the team. He said he would say something to the other employees, but kept putting off actually doing so.

Danielle approached ACDL for advice. ACDL told her that she might have a complaint of disability discrimination or harassment under the law, but Danielle did not want to make a complaint at this point in time. ACDL wrote a letter detailing the requirements under disability discrimination law and asking the employer to resolve the matter swiftly.

Upon receiving the letter, Danielle’s employer called an urgent staff meeting to discuss the importance of a safe work place and the policy on harassment and discrimination. Danielle’s complaint was then dealt with in accordance with the workplace grievance policy and the situation was resolved.

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• Research article
• Open access
• Published: 04 December 2018

Disabled people’s experiences of accessing reasonable adjustments in hospitals: a qualitative study

• Stuart Read 1 ,
• Pauline Heslop   ORCID: orcid.org/0000-0002-8628-6868 1 ,
• Sue Turner 2 ,
• Victoria Mason-Angelow 1 ,
• Nadine Tilbury 1 ,
• Caroline Miles 1 &
• Chris Hatton 3  

BMC Health Services Research volume  18 , Article number:  931 ( 2018 ) Cite this article

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The UK Equality Act 2010 requires providers of health services to make changes or ‘reasonable adjustments’ to their practices in order to protect disabled people from discrimination or disadvantage when accessing care. Existing evidence suggests that despite this legislation, health services are not always providing reasonably adjusted care for disabled people. This paper presents the perspectives of disabled people themselves in relation to their experiences of accessing reasonable adjustments in hospitals in England.

Twenty-one semi-structured interviews were held with disabled people who had a recent experience of hospital care in England. Participants were asked about the extent to which the hospital provided reasonably adjusted care, and if necessary, how they thought the provision of reasonable adjustments could be improved. Each interview was anonymised and transcribed, and the data analysed using thematic analysis.

Participants reported mixed experiences about whether and how reasonable adjustments were provided: some shared positive examples of good practice; others spoke about difficult encounters and limited provision. Recommendations made include a need for culture change in how reasonable adjustments are perceived and enacted; improvements in identifying the needs of disabled people; improvements to the hospital environment and the provision of information; and the need to involve disabled people themselves in the process of change.

Conclusions

Gaps remain in how reasonable adjustments are provided for disabled people accessing hospital care. It is important for hospital staff to listen to the perspectives of disabled people about the provision of reasonable adjustments, and make improvements as necessary. Hospital staff could also do more to share good practice in relation to the provision of reasonable adjustments to effectively inspire and embed positive change.

Peer Review reports

Within England, healthcare providers are required to ensure that the care they provide to patients is ‘person-centred’, and designed to suit each person’s individual needs, wishes and preferences [ 1 ]. Person-centred care is achieved in practice through the patient and healthcare provider working collaboratively to achieve desired care strategies and outcomes, rather than the patient being a passive recipient of care [ 2 , 3 ]. Person-centred care has been successful in demonstrating improvements in health outcomes [ 4 ].

An additional dimension of person-centred care for disabled people Footnote 1 is ensuring that they have full access to health services – and this is achieved through the provision of ‘reasonable adjustments’ Footnote 2 [ 1 , 5 ]. The UK Equality Act 2010 [ 6 ] requires public services, including health services, to provide changes or ‘reasonable adjustments’ to their practices to ensure that disabled people are not denied access to the quality of care afforded to non-disabled patients. The requirement is ‘anticipatory’, so services are required to anticipate and make provision for adjustments that disabled people may require (S149) [ 6 , 7 ]. The Equality Act 2010 [ 6 ] defines a disabled person as anyone who has ‘a physical or mental impairment’ and for whom the impairment has ‘a substantial and long-term adverse effect on [their] ability to carry out normal day-to-day activities’ (S6.1).

The Equality Act 2010 [ 6 ] directs that services must consider the provision of reasonable adjustments in three ways. The first is changing the physical features of a service so that disabled people can access it, such as making buildings wheelchair accessible, or changing the visual appearance of wards or departments (e.g. making them ‘dementia friendly’ [ 8 ]). The second is changing existing practices or procedures to make access easier for disabled people, such as changing the timing, length or location of a disabled person’s health appointment [ 5 ]. The third is providing auxiliary services or aids so that disabled people are better able to access healthcare, such as providing a British Sign Language interpreter [ 9 ], or providing information in accessible formats [ 10 ]. These examples highlight that the provision of reasonable adjustments by healthcare providers can involve making global changes to health services that will benefit many disabled people, but also changes at an individual level to help meet the specific needs of a disabled person.

There are a number of recent initiatives in England to encourage reasonably adjusted care for disabled people in hospitals. The National Health Service (NHS) Standard Contract requires providers of health services to comply with the Equality Act 2010 [ 11 ]. The Accessible Information Standard [ 12 ] aims to ensure that disabled people are able to communicate and to access information in a way that is suited to their individual needs. NHS Digital [ 13 ] is working to develop a ‘flag’ on the Summary Care Record, which is a collection of a patient’s individual information created from their medical records held by their general practitioner. This will alert staff that the person is entitled to the provision of reasonable adjustments, and provide a record of the exact adjustments agreed. Finally, a series of documents detailing the type of reasonable adjustments needed for people with intellectual disabilities living with different healthcare conditions has been produced by Public Health England [ 14 ].

Despite the legal requirement and policy initiatives to provide reasonable adjustments for disabled people, evidence suggests that they are not being consistently provided by hospital services [ 7 , 15 , 16 ]. Many NHS Trusts (public bodies with responsibility for the provision of health services in a geographical area) have demonstrated a commitment to providing effective reasonable adjustments for disabled patients, such as ensuring staff receive training about the needs of disabled people [ 7 ]. However, research by Tuffrey-Wijne and colleagues [ 15 , 16 ] suggested that although legislation or policy may be in place, the responsibility to enact it lies with individual hospitals. Therefore, whether and how reasonable adjustments are provided is shaped by the knowledge and responsiveness of hospital staff, and the resources that the hospital is willing to provide to ensure reasonably adjusted care. This is an important point to consider, as what reasonable adjustments are and how these are enacted may not be well understood by care providers [ 15 , 16 , 17 , 18 ].

Disabled people have reported barriers when accessing health services, including difficulties navigating inaccessible environments [ 19 ]; and inconsistent use of flagging systems, accessible information, and hospital passports (documents that are often used with people with intellectual disabilities to provide hospital staff with important information about their individual needs and health when they are admitted to hospital) [ 7 , 15 , 16 , 20 , 21 ]. Together, this raises questions about the quality of care that disabled people can expect to receive [ 17 ], which in turn, can affect their health outcomes, for example, a lack of reasonable adjustments was reported to be a contributory factor to the premature deaths of people with intellectual disabilities [ 22 , 23 ].

Evidence relating to the provision of reasonable adjustments by hospitals commonly focusses on patients with intellectual disabilities; evidence relating to disabled people with a broader range of impairments is more limited. In addition, disabled people’s own recommendations about how hospital services could potentially improve the provision of reasonable adjustments has rarely been sought. The aim of this study was to investigate first, disabled people’s own experiences of the provision of reasonable adjustments by hospital services; and secondly, to explore their ideas about potential improvements.

We conducted semi-structured interviews with disabled people about their own experiences of receiving reasonably adjusted hospital care. To develop the project information materials and topic guide, we worked with an advisory group of disabled people. The group suggested structuring the interview in a way that allowed disabled people to share their hospital ‘journey’, exploring their experiences before they arrived at hospital, during their hospital visit, and when they left hospital. The topic guide for the interviews was therefore developed specially for this research study and structured in this way see Additional file 1 .

Recruitment

To participate in the study, we required people to personally identify as disabled; be aged 18 years or older; and have accessed hospital care (e.g. inpatient, outpatient or accident and emergency) in England for a personal health need within the past 2 years. Information about the study was cascaded to disabled people via networks of disability and health or self-advocacy organisations in England. Disabled people interested in participating in the study contacted the research team to learn more about the project. They were then sent a study information sheet and a consent form to look at, and asked to think about one hospital experience in the past 2 years that they would feel comfortable discussing with the researcher. On the day of the interview, the interviewer discussed the project information sheet and consent form with the disabled person to ensure that they understood the interview process, and that they were happy to continue.

Interviews were conducted either in person at the participant’s home, or via telephone. The structure of the interview followed the topic guide, and focused on understanding participants’ hospital experiences, and whether and how reasonable adjustments had been provided, if required. Participants were asked whether the provision of reasonable adjustments could be improved by hospitals, and if so, in what ways. Each interview lasted approximately 1 h, and was audio-recorded, with consent.

The study received ethical approval from the Faculty of Social Sciences and Law Committee for Research Ethics, University of Bristol in 2016 (reference 30501).

Interviews were transcribed and the transcripts anonymised. We used thematic analysis as an analytical framework, as described by Braun and Clarke [ 24 ]. Using NVivo 10 software, the lead author independently read all of the interview transcripts and assigned codes to establish patterns from the texts. Themes and linked subthemes were then extracted. Through a process of iterative reading and analysis, codes and themes were modified and shaped, and an initial coding frame based on the thoughts and reflections of the lead author was produced. Each of the interview transcripts were then independently read by two co-authors, who recorded their initial thoughts for emerging codes and themes. The three researchers then met to collaboratively discuss ideas about the data and to agree the final themes relating to disabled people’s experiences of reasonable adjustments to the hospital care they received, and to their recommendations for improvements.

Twenty-one disabled people participated in the study. As Table 1 shows, this included 12 women, eight men, and one couple (one man and one woman). Participants were drawn from across England.

Although the study did not require disabled participants to disclose the nature of their impairments, the content of many of the interviews indicated that participants experienced a range of different impairments including physical impairments, sensory impairments, intellectual disabilities, and mental health support needs.

Five themes relating to reasonable adjustments to the hospital care disabled people received were identified from the interview data: (i) the process of identifying a person’s need for reasonable adjustments; (ii) reasonable adjustments in relation to the physical features of a hospital; (iii) changes to existing practices within a hospital; (iv) the provision of additional aids or services; and (v) recommendations for the provision of reasonable adjustments for disabled people by hospitals.

The process of identifying a person’s needs for reasonable adjustments

Participants discussed a variety of ways in which their need for reasonable adjustments was identified and then recorded or ‘flagged’ on hospital systems. Identifying that a person is disabled and may need reasonable adjustments usually precedes the more formal process of ‘flagging’, whereby a hospital alert or ‘flag’, is placed on the disabled person’s records to remind professionals that reasonable adjustments are required [ 13 ]. The distinction between identification and ‘flagging’, however, lacked clarity for most participants.

One participant (P7) with intellectual disabilities described a positive experience of a health professional reviewing her hospital passport with her, commenting that ‘it’s good having it’ to ensure that the staff understood her needs. However, this was an uncommon experience amongst the participants. More frequently, participants indicated that their needs were not identified and recorded, as the following exchanges typified:

Interviewer: did the hospital do anything that you can think of that made them aware about your needs? So, did they perhaps contact you to talk about your needs, and what adjustments may be provided?

Participant: No, there's never any...I've never had any contact of that nature. (P4)

Interviewer: As you have been to hospital a few times, were your needs actually flagged up on the system? You said that you were well known to the staff.

Participant: To be honest, I'm finding I'm having to explain what I can do and I can't do to the nurses (P18).

Reasonable adjustments in relation to the physical features of a hospital

Participants made many references to the need for, or provision of reasonable adjustments in relation to the physical features of a hospital, such as its physical accessibility for people with mobility or sensory impairments. Some participants spoke about positive changes to a hospital’s physical features to make the environment more accessible for disabled people – sometimes in a number of creative ways. For example, one woman noted how the outpatient department was accessible to disabled people with different impairments:

…everything is on the flat […] they're nice, wide corridors actually. And they're well lit. And they do have hand rails. Which are a great help, you know. Especially if you're not too steady on your feet, it's always nice to know there's something there to grab hold of, if you happen to be walking. And […] that's a low-level desk, so that you have no trouble, you're not straining or anything, you know. And as far as I'm aware, they have induction loops for if you were wearing […] hearing aids (P9).

Other participants had mixed experiences about the extent to which the hospital had adjusted its physical features, for example noting that although some changes had been made, they were insufficient to address the barriers experienced by disabled people. One man with a physical impairment explained that although some physical features of the hospital were suitable, he was at a disadvantage because of an inaccessible door release:

The corridors were wide enough. Again, using the lifts, the buttons are at a reasonable level. There's two – there's three floors. There's an announcement in the lift, there's Braille on the lift buttons, there's signage. The doors, because obviously with security they have to remain closed, but I found that when I was using – when I was in my powered wheelchair, I was limited to going places. I had to wait for someone to come and open the door […] I mean other people were using it quite normally and pressing the button to let themselves out. Whereas I couldn't reach it. Had to call a member of staff, or someone to come past and ask them to push the button to release the door, for them to open the door (P18 ).

Other participants described difficulties trying to use hospital services, suggesting that little or no attention had been paid to identifying if a person was disabled and required reasonable adjustments. For example, one woman (P5) described difficulties when attending a mammogram appointment, when the cubicle was too small for her to be able to get changed easily.

Changes to existing practices within a hospital

Some participants stated that hospital staff were willing and able to adjust standard hospital practices to meet their needs. The examples shared by participants indicated that such reasonable adjustments had been provided both to help disabled people engage with the hospital system as a whole, and with specific procedures. For example, one participant with a physical impairment described how his doctor understood and supported his request to have his wheelchair with him:

When I was in hospital, after a day, they said my condition was quite bad, and sent me to the intensive care unit, where there was an issue with having a powered wheelchair near the equipment. Which I can understand. And thankfully the doctor said, 'No, he needs his wheelchair.' Because I said to the doctor I – you know, I function better when I'm sitting up (P18).

Another participant with a visual impairment, explained that health professionals had understood and accommodated his needs effectively:

The consultant knew that I couldn't see. So sometimes she would guide me to the couch to lay on, so she could do....... And she was...you know, she explained what she was doing […] she explained everything (P17).

Such positive experiences were not described by all participants and some talked about how their needs as a disabled person were not met. For example, one woman said:

…I need an MRI [Magnetic Resonance Imaging] scan and then you go in one of these things, and I tell them (health professional), like ‘hey, I have hearing impairments, can you please stand on, you know, that side of my head?’ […] and then when you’re in there […] They sit on the wrong side or they, you know, gotta talk very loud, and I’m like, ‘no, that’s not gonna really help me’ (P12)

The provision of additional aids or services

Participants reported many examples of whether and how a hospital had provided additional aids or services for them. Key issues were accessible information, hospital transport, and the provision of additional assistance. In some cases, participants reported that they had been supported in a positive way by the hospital; others reported that their needs were not met appropriately.

One participant, for example, reported that she was provided with appropriate information, saying ‘I did have a lot of information sent to me, yeah. […] It was all easy language, all easy words’ (P7). Other participants, however, reported that the hospital did not appear to make accessible information readily available. One person with a visual impairment explained: ‘I prefer text, phone call or maybe emails […] but they do prefer to [send] - just a letter […] and that’s not appropriate for me ’ (P20).

A variety of experiences was also reported in relation to hospital transport. One person noted how she was pleased with the hospital transport service:

…we've got a very good hospital transport service. And if I haven't been able to get there, or if I have been in my wheelchair, and I've got a hospital appointment, I phone up and I get a hospital transport ambulance to come and get me, and I'm taken in to the appointment (P9).

Others reported disappointing experiences, including transport being provided that was not accessible for people using a wheelchair:

They sent an ambulance out, ambulance people say, ‘No, you can't take your wheelchair. Can't take your manual chair at all. It's an emergency ambulance, you can't have the wheelchair in it.’ So, I'm thinking, ‘Well I'm going to be a nightmare to nurse if I haven't got a chair at all up there. What's going on here?’ So, I had to get hold of one of the people that work for me and ask her if she'd come and collect a wheelchair to take it up to the hospital, so I had a manual chair to be in the ward (P3).

Another key area of concern to the disabled participants was having assistance at appointments. Again, participants reported mixed experiences. One participant commented: S omebody helped me, you know. You know, took my arm and things like that […] [they] asked which side I wanted, you know, which way did I want to go, left or right, things like that (P13). Another participant commented:

The radiographer did [provide assistance]. I told her I couldn't see where I was going, she led me. She did everything she should have done. She was very patient-sensitive, if you like. But nobody else in the hospital was (P5).

Recommendations for change

Participants shared many ideas about the ways in which they thought improvements could be made to the provision of reasonable adjustments for disabled people by hospitals. Five key recommendations were made: a) culture change in how reasonable adjustments are perceived and enacted; b) improvements in identifying the needs of disabled people; c) improvements to the hospital environment; d) improvements to the provision of information; and e) disabled people themselves being involved in the process of change.

‘Culture change’ in how reasonable adjustments are perceived and enacted

The most commonly reported recommendation was the need for ‘culture change’ within the NHS in terms of how reasonable adjustments are perceived and provided by hospital staff. Participants generally understood and described ‘culture change’ as being related to the ways in which staff values or attitudes had an impact on their practice. The participants recommended that hospital staff should be more aware, open and responsive to the need for reasonable adjustments for disabled people. Strategies to bring about ‘culture change’ were proposed at a range of levels, including staff taking time to listen to disabled people themselves; the provision of staff training about the needs of disabled people; and systems and processes to be in place to clearly record a disabled person’s needs. As one participant commented: ‘ I don’t want special. I just want appropriate. […] But that means listen to people’ (P3).

Improvements in identifying the needs of disabled people

Another commonly reported recommendation for change was to better identify and record the needs of disabled people. Participants suggested the recording of a person’s needs on a personalised form such as a hospital passport, or on a standard reporting form currently in use throughout the hospital. One participant commented:

Well I think what they could have done is that on – considering the reception probably would have had a form for me […] they could have probably had a section on there as to what needs I had. Like, you know, needs a wheelchair […] you know, sort of take the initiative. (P14).

This was echoed by another interviewee, who considered that improvements to how a person’s needs were recorded would be beneficial to the overall running of the hospital:

You know, I did talk to them about it, and I said, 'You haven't got enough boxes to tick, like, ‘This patient needs a carer with them.’ ‘This person's in an electric wheelchair.' If those boxes were ticked, then appointments wouldn't be made that were wrong (P21).

Improvements to the hospital environment

The third key area for recommendations was for improvements to hospital environments. Recommendations were wide-ranging, and addressed a number of areas including improving wheelchair accessibility or the general physical access of a hospital; ensuring that disabled parking was close to the entrance; making sure that hospital transport services were accessible and can carry a support worker or carer if required; the provision of equipment or support to assist disabled people, such as hoists and hearing loops; and paying attention to signage, colour and general visual accessibility of the hospital so that disabled people are able to navigate their surroundings easily.

Improvements to the provision of information

Disabled people also recommended that improvements are required to the way in which information is provided by hospitals. Several spoke about the importance of receiving information that was in an accessible format for their needs such as large print, or easy-read materials, or information provided using different formats such as on a CD instead of using print. Hospital systems should be able to identify the specific information needs of disabled people and respond to them appropriately.

Disabled people themselves being involved in the process of change

Finally, some participants recommended involving disabled people themselves in identifying local opportunities for change and providing advice about implementing change. One participant (P16) recommended asking disabled patients to complete satisfaction questionnaires, or to take photographic evidence of any barriers they encountered to prompt service improvements. Others stressed the importance of disabled people themselves shaping improvements. For example, one participant who worked as a volunteer in her local hospital (P2) illustrated how being ‘on the ground’ could enable small but significant changes that increased accessibility for disabled people. She had identified that some automatic doors were problematic for disabled people as they were ‘swinging out too quickly’, so she reported this to the maintenance team and within a week the speed of the door opening had been changed and slowed down. It was the fact that she was able to identify this as a disabled person herself, and knew who to report it to, that appeared to have been instrumental in getting this changed.

This study explored disabled people’s own experiences about the provision of reasonable adjustments by hospital services, and their ideas about how this could be improved, if indicated. Participants reported mixed experiences about how reasonable adjustments were provided: some shared positive examples of good practice; others spoke about difficult encounters and limited provision. Challenges were in relation to the process of identifying a person’s need for reasonable adjustments; the physical features of a hospital; existing practices within a hospital; and the provision of additional aids or services.

In 2008, the Michael Inquiry reported that ‘There is a clear legal framework for the provision of equal treatment for people with disabilities and yet it seems clear that ... services are not yet being provided to an adequate standard’ ([ 25 ]: p.55). The legal framework was strengthened by the Equality Act 2010 [ 6 ], but the Life Opportunities Survey [ 26 ], a large-scale longitudinal survey of disability in Great Britain which was conducted at about the same time as the introduction of the Equality Act 2010, reported that up to 13% of disabled adults identified health staff as being responsible for discrimination they experienced. Disabled adults were significantly more likely than their non-disabled peers to experience barriers in accessing health care to the extent that ‘health care provision in Great Britain is failing to meet its statutory requirement to provide ‘reasonable adjustments’ to ensure equality of access for disabled adults’ ([ 19 ]: p.926).

Such concerns are not restricted to England. In the years following the passing of the Americans with Disabilities Act in 1990 [ 27 ], there was a growing body of research suggesting that barriers to healthcare access were persisting for disabled people because of the lack of reasonable adjustments provided [ 28 , 29 ]. A range of structural, financial, cultural and personal barriers to accessing healthcare were reported by disabled people of different ages and with a wide range of impairments, findings which were consistent with other studies carried out nationwide [ 28 ].

Research evidence about the identification and provision of reasonable adjustments by hospitals in England for disabled people subsequent to the Equality Act 2010 is scant but suggests the variable provision of reasonable adjustments by hospital services similar to that reported by disabled people in this study. A survey of 119 hospital Trusts (30% of all NHS Trusts in England) [ 7 ] concluded that some forms of reasonable adjustments were being delivered in many Trusts, particularly relating to the provision of accessible information and the use of hospital passports. The authors also identified that far fewer Trusts provided evidence about the provision of reasonable adjustments relating to the face-to-face treatment of patients. Our study participants did not identify a divide between collective adjustments for groups of patients and individualised adjustments for a particular patient, possibly because they were reflecting on the quality of provision provided to them, as well as the availability of the adjustments.

Tuffrey Wijne et al. [ 16 ] researched factors that promote and compromise the provision of reasonably adjusted healthcare for patients with intellectual disabilities in NHS hospitals. They reported that in order for reasonable adjustments to be embedded, hospital staff must be allowed to identify when disabled people require reasonably adjusted care, and provided with the necessary management support and resources to deliver the adjustments [ 15 , 16 ]. Effective collaboration between staff and departments is another important factor [ 15 , 16 , 22 , 23 ]. Our study participants reflected on times when there was no consistent identification and recording of their needs, which resulted in them repeatedly having to retell their ‘story’ and request adjustments to their care. Generally, they had felt disempowered by this, and some reported that such occasions had made them feel a ‘nuisance’. The overwhelming impression was that the provision of reasonable adjustments was on an ad hoc basis in response to a direct request and dependent on the largesse of an individual staff member. Were hospital procedures in place that could easily identify disabled people and the adjustments they required, and staff were equipped with the authority to deliver the adjustments, some of the problems faced by the participants may have been avoided.

Ward culture and staff attitudes are ‘crucial’ in ensuring that hospital services are accessible ([ 16 ]: p.1). The need for ‘culture change’ was the most commonly reported recommendation from the participants in our study, but the views of the participants about how this should be brought about differed from research based on the perspectives of hospital staff. Our study participants advocated staff taking time to listen to disabled people themselves, the provision of staff training about the needs of disabled people, and systems and processes to be in place to clearly record a disabled person’s needs – all issues close to their experiences as disabled people accessing healthcare. A large scale study of culture and behaviour in the NHS in England [ 30 ] summarised strategies for creating positive cultures as listening to staff and encouraging them to be involved in decision making, problem solving and innovation; providing staff with helpful feedback; taking effective, supportive action to address system problems when improvement is needed; fostering good teamwork; and ensuring that staff feel safe, supported, respected and valued at work. Perhaps we should add the word ‘patient’ to the word ‘staff’ in the summary above to emphasise that a culture in which patients as well as staff feel listened to, involved in decision-making and respected and valued is a culture which will work well for both patients and staff.

The good practice examples shared by disabled people in this study highlight the need for hospitals to review, share, and learn from such examples, including the strategies used to enact them, in order to promote and evidence how hospitals provide reasonably adjusted care, and to help embed positive change [ 5 , 31 ].

Participants in our study recommended involving disabled people themselves in service improvements. When Trusts review how reasonable adjustments are provided in their services, they must focus on listening to, and understanding, the perspectives and experiences of disabled people themselves [ 10 , 15 , 20 , 22 , 23 ]. For disabled people’s insights to contribute to meaningful service change, hospital services need understand the importance of working cooperatively with disabled patients [ 32 ].

Most of the existing research about the provision of reasonable adjustments by hospitals relates to people with intellectual disabilities [ 7 , 15 , 16 , 20 , 21 ], what is original about our paper is that our research builds on these findings from a pan-disability perspective. In 2008, the Department of Health (England) stated that ‘if services and health outcomes are improving for people with learning disabilities, they are likely to be improving for other groups at risk of health inequalities’ ([ 17 ]: p.6). Learning from the experiences of people with intellectual disabilities can therefore provide a ‘benchmark’ for the care of other disabled people accessing hospital care.

Our study clearly highlights that research about the provision of reasonable adjustments by hospitals for disabled people is a significant issue requiring future research. Specific aspects that future research could cover include: i) the proportion of the patient population that requires the provision of reasonable adjustments; ii) the most commonly required adjustments needed by hospital patients and their cost; iii) the input required by hospital staff, systems and processes, and their cost, to ensure that hospitals are consistently and effectively meeting the requirements of the Equality Act 2010, in particular the anticipatory duty to make reasonable adjustments.

Strengths and limitations

There are a number of strengths and limitations of this study. One strength is its consideration of different impairment groups in the provision of reasonable adjustments. The Equality Act 2010 and its concept of reasonable adjustments is not disability-specific, so exploring the commonalities and differences across different impairment groups can be instructive. Another strength of the study is the inclusion of the voices and experiences of disabled people and their recommendations for change.

There are some potential limitations to the study too. All participants identified themselves as disabled, but research into attitudes towards, and experiences of, disability has shown that disabled people vary as to whether they perceive themselves to be ‘disabled’ or not. The Office for National Statistics Opinions Survey in 2012 [ 33 ] included a question asking those who came under the Equality Act 2010 [ 6 ] definition if they thought of themselves as disabled, and 62% did not. Mont [ 34 ] suggests that the self-identification of disability generates the lowest prevalence rates of disability. Further potential limitations are that participants were recruited via existing disability and health organisations, and all participants were able to verbally report their views and experiences with little help. The consequence of these potential limitations is that the experiences described in this paper may come from relatively independent disabled people who have a particular interest in highlighting or changing health care practice, or who feel empowered to ensure that they receive reasonably adjusted care. Although we tried to ensure diversity of participants, such as in terms of gender, region and impairment, their stories cannot be considered representative of all disabled people’s experiences. Further, all participants were asked to describe an experience of accessing hospital care from within the past 2 years. Their experiences may therefore not reflect recent initiatives to improve the provision of reasonable adjustments for disabled people in hospitals.

In England, hospitals are required to make reasonable adjustments for disabled patients accessing care. Some disabled participants in this study reported evidence of effective reasonably adjusted care, but this was not common, and the overall picture was mixed. Gaps remain in how reasonable adjustments are provided for disabled people accessing hospital care. It is important for hospital staff to listen to the perspectives of disabled people about the provision of reasonable adjustments and make improvements as necessary. Hospital staff could also do more to share good practice in relation to the provision of reasonable adjustments to effectively inspire and embed positive change.

In this paper, we have used the term ‘disabled person’ rather than ‘person with a disability’. While we appreciate that international readers may prefer terminology acknowledging the person first, the UK interpretation of the social model of disability regards ‘disability’ as a form of social oppression which individuals experience in society. This interpretation argues that a disabled person is not a ‘person with a disability’ as disability is not a characteristic that is part of, or owned by, the individual themselves, but is instead shaped and changed by how society is experienced.

While we have used the term ‘reasonable adjustments’ in this paper to reflect the terminology of the Equality Act 2010, international readers may be more familiar with the term ‘reasonable accommodations’.

Abbreviations

Magnetic resonance imaging scan

National Health Service

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Acknowledgements

The authors wish to thank our advisory group for helping us shape the study and its materials.

This work was supported by the Economic and Social Research Council grant: ES/M008339/1 ‘Tackling Disabling Practices: co-production and change’.

The funding bodies agreed the design of each study but played no role in the collection, analysis, and interpretation of data or in writing the manuscript.

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SR contributed to all aspects of the study’s design, creation of study materials, data collection, data analysis and interpretation. PH and ST contributed to the study’s design, creation of study materials, data analysis and interpretation. VMA contributed to the study’s design, creation of study materials, and data collection. NT contributed to the data collection. CM and CH contributed to the data analysis and interpretation. All listed authors have contributed to the arguments of the paper and have read and agreed the final submission.

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Read, S., Heslop, P., Turner, S. et al. Disabled people’s experiences of accessing reasonable adjustments in hospitals: a qualitative study. BMC Health Serv Res 18 , 931 (2018). https://doi.org/10.1186/s12913-018-3757-7

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Success in Africa: People with disabilities share their stories

Tom shakespeare.

1 Norwich Medical School, University of East Anglia, Norwich, United Kingdom

Anthony Mugeere

2 Department of Sociology and Anthropology, Makerere University, Kampala, Uganda

Emily Nyariki

3 School of Public Health, University of Nairobi, Nairobi, Kenya

Joseph Simbaya

4 Institute of Economic and Social Research, University of Zambia, Lusaka, Zambia

Whereas most narratives of disability in sub-Saharan Africa stress barriers and exclusion, Africans with disabilities appear to show resilience and some appear to achieve success. In order to promote inclusion in development efforts, there is a need to challenge narratives of failure.

To gather life histories of people with disabilities in three sub-Saharan African countries (Kenya, Uganda and Sierra Leone) who have achieved economic success in their lives and to analyse factors that explain how this success has been achieved.

Qualitative research study of economic success involving life history interviews with 105 participants with disabilities from both urban and rural settings recruited through disabled people’s organisations and non-governmental organisation partners, framework analysis of transcripts to chart success and success factors.

Participants had faced barriers in education, employment and family life. They had largely surmounted these barriers to achieve success on an equal basis with others. They were working in private and public sectors and were self-employed farmers, shopkeepers and craftspeople.

The findings of this study suggest that, given the right support, disabled people can achieve economic success, with the implication being that investment in education or training of disabled people can be productive and should be part of overall development efforts for economic reasons, not solely to achieve social justice goals.

In understanding the experience of disability in Africa, particularly in terms of poverty and livelihoods, there appears to be a paradox. Disabled Africans face structural factors such as barriers in the environment, in education and in employment, as well as widespread discriminatory attitudes, that limit their chances of achieving success on an equal basis with others (Banda-Chalwe, Nitz & De Jonge 2013 ; Groce et al. 2011 ; WHO 2011 ). For example, Eide and Ingstad ( 2013 ) summarise the findings of the 2002–2013 series of seven SINTEF surveys on disability in Africa:

Key indicators on education, mental and physical health, employment, socio-economic status, access to information, social participation, et cetera all point in the same direction: there are substantial gaps in services to disabled people, disability is associated with a lower level of living when compared to non-disabled persons, women with disabilities are worse off than males, and the rural disabled have a lower level of living than their urban counterparts. (p. 2)

The SINTEF data are confirmed by other studies across the African continent (Trani & Loeb 2012 ; Trani et al. 2010 ). International data confirm that this situation is general for people with disabilities in low- and middle-income settings. From Filmer ( 2008 ), it is evident that adults with disabilities are more likely to live in poorer households. Mitra, Posarac and Vick ( 2011 ) analyse multidimensional poverty among people with disabilities in low- and middle-income countries. Persons with disabilities are disproportionately unemployed or economically inactive. A detailed study of access barriers for people with mobility impairment in Zambia shows some of the reasons why people with disabilities are so often excluded from education, employment, transport and other social goods (Banda-Chalwe et al. 2013 ). Similarly, there are barriers to participation for deaf people, as was found in Uganda (Mugeere et al. 2015 ).

As a consequence of this exclusion from public life, and the worlds of education and employment, at first glance prevailing cultural representations of disability in Africa appear overwhelmingly negative, featuring discourse of people with disabilities as ‘economically invalid and economically dependent’ (Tsemma 2014 :145). Even in Uganda, negative attitudes are common, despite the vigour of the disability rights movement (Abimanyi-Ochom & Mannan 2014 ). As in most developing countries, a person with disability is more likely to be seen begging at the traffic lights than to be encountered as a teacher or doctor or shopkeeper (Groce et al. 2013 ). Faced with these barriers to achievement, it is no surprise that research finds deep cultural beliefs about disability and incapacity across the African continent (Munsaka & Charnley 2013 ; Swartz & Marchetti-Mercer 2017 ).

Yet at the same time, anyone who spends time working with people with disabilities in Africa – or many other low-income settings – has encountered dozens of successful, assertive, proud persons with disabilities. Often, these folk are associated with vibrant disabled people’s organisations (DPOs), but increasingly they have moved on into mainstream roles in society. In reviewing qualitative studies, Eide and Ingstad ( 2013 ) point to the importance of capturing the agency of people with disabilities, while balancing that with an awareness of the structural forces that make it so difficult for people with disabilities and their households to survive, let alone thrive. Hearing the voices of people with disabilities living in poor conditions is emphasised: they suggest that while disability and poverty are linked, some people with disabilities do manage:

Individuals with disabilities living in poverty do struggle to survive and to make the best out of their situation – and there are encouraging examples of individuals who have used their disability as a resource for themselves and for others in the community. (Eide & Ingstad 2013 :6)

The danger could be that the achievement of these more successful persons with disabilities remains largely invisible, which could mean that investment in disabled people by national governments or international donors – whether in education, vocational rehabilitation, employment, or social protection – might be considered to be a waste. Funding participation of people with disabilities might thus be considered to be more of a charitable or humanitarian response, rather than a development priority. Yet this thinking risks excluding 15% of the population (WHO 2011 ). This is not simply a moral problem; it could also be an economic mistake: for example, Buckup ( 2009 ) argued, in a study for International Labour Organisation which included Zambia, that exclusion of people with disabilities from the world of work causes economic losses of 3.7% of GDP.

Kenya, Uganda and Zambia have all ratified the Convention on the Rights of Persons with Disabilities, as well as domestic civil rights legislation. For example, in 2012, Zambia passed the Persons with Disabilities Act No. 6 , aimed at promoting equal participation by persons with disabilities. In Uganda, the 2006 Persons with Disabilities Act offers tax credits on employers who take on 10 or more persons with disabilities, as well as obliging workplaces to make modifications, a similar approach to Kenya’s 2003 Persons with Disabilities Act (Tsemma 2014 ). There is still, however, a long way to go before everyone understands disability to be a human rights issue, not a charitable issue (Abimanyi-Ochom & Mannan 2014 ; Tsemma 2014 ); there is an implementation gap between the positive legislative picture and the situation on the ground (Abimanyi-Ochom & Mannan 2014 ; Owens & Torrance 2016 ).

World Bank data, where available, casts light on the situation in these three countries. Kenya, Uganda and Zambia are comparable on health indicators. Life expectancy is reported to be 61.3 for Zambia and 59.5 for Uganda. The contrasting role of government health services is indicated by data on out-of-pocket health expenditure, which comprises 26.1% of healthcare costs in Kenya, 30% of healthcare costs in Zambia and 41% of healthcare costs in Uganda. Of note is the fact that 11% of Zambian children and 6.2% of Ugandan children are out of school. Zambia, thanks to copper exports, has the highest GDP per capita at $1627, followed by Kenya at $1143 and Uganda at $662. In each setting, most people live in rural areas and a minority live in urban areas (2013: 25% of Kenyans, 15% of Ugandans and 40% Zambians).

The complexity of trying to understand individual disability successes within the backdrop of disadvantage fuelled the Department for International Development/Economic and Social Research Council-funded research project reported in this paper, which had the aim of exploring factors that explained the success of some persons with disabilities on the African continent. Success was not firmly defined in advance by the researchers, but was defined locally. Success was predominantly understood in economic terms. To be successful was to enjoy economic prosperity on an equal basis with others, to use the language of the UN Convention on the Rights of Persons with Disabilities. In this project, the researchers were looking for persons with disabilities who were either working as self-employed people or employed in mainstream, DPO or non-governmental organisation (NGO) settings. Very few of them could be classified as wealthy, but all of them were getting by, and most of them were able to have their own home and start a family.

In order to home in on this criterion of economic independence, for the purposes of this study people with intellectual disabilities were excluded because they were considered to be less likely to have achieved this goal, although it was recognised that some people with intellectual disabilities were contributing to their households. People with mental health conditions were also excluded because these are often fluctuating situations, with complex impacts on livelihood. In limiting the study to people with physical and sensory impairments, the researchers did not negate the difficulties of these other population groups, nor the fact that some of them could be considered successful on the same or different terms. They aspired to study these experiences in a future project. The current paper reports on the findings about the extent and nature of success experienced by these participants, whereas a subsequent paper will analyse the factors that might explain this success.

Methodology

This study was conducted in Kenya, Sierra Leone, Uganda and Zambia, although data from Sierra Leone are not reported in this paper. The aim is to complete transcription and publish the Sierra Leone data in a subsequent publication.

This study entailed conducting in-depth life story interviews with persons with disabilities in both urban and rural settings who had experienced success in their lives. The research team did not attempt to define what success was precisely, although the recruitment material was explicit about economic success being the main criterion. The researchers did not seek those who were remarkable – for example, Paralympians or millionaires – but instead sought out everyday life stories of individuals who had succeeded on an equal basis with others. The ambition was to recruit approximately equal numbers of men and women.

Recruitment was via DPOs, such as National Union of Disabled Persons of Uganda, Association of Disabled Persons of Kenya; as well as through NGOs, such as Leonard Cheshire Disability; and also, government agencies such as Zambia Agency for Persons with Disabilities. Efforts were made to recruit half of the participants in urban and half in rural settings. In Uganda and Zambia, participants were purposefully recruited from different regions of the country, as well as the capital cities, using existing networks. The Kenyan team also recruited from both Nairobi and a rural district. It was not at all difficult to recruit people with disabilities who were perceived to be successful in their communities, drawing on existing NGO and DPO networks. However, although the team set out to conduct 40 interviews in each setting, the final data set comprised only 104 participants, which was mainly because of constraints on staff time. There are a further 12 transcripts from Sierra Leone, although 40 interviews have been conducted there.

All authors were responsible for the interviews. All interviews were recorded and then transcribed. Analysis was conducted using the Framework Analysis approach (Ritchie & Spencer 1994 ). After reading and rereading the transcripts, a framework was constructed according to the themes which emerged from the stories. A separate framework was created for each country, using Excel. A separate section of the framework was created to cover individual, family education, employment, attitudes and help received. The next stage was charting, where each transcript was analysed according to the framework, and summaries were added to the Excel spreadsheet. For each country, at least three different coders created, added or revised the framework, reaching a consensus as to how to analyse the data most completely and accurately. Use of the Framework Analysis approach, based on Excel spreadsheets, made it easy to compare participants and also to share the data analysis across the three African countries as well as UK and South Africa.

Ethical considerations

Information about the study was provided to all participants, each of whom gave written or in a few cases oral consent. All data were anonymised after transcription. Ethics review was conducted by the Ethics Committee of the university and local research ethics committees and permissions were granted. This study received ethical clearance from the Ethics Committee of University College London (1661/007), as well as from relevant ethics committees in Kenya (NACOSTI/P/16/92785/12347), Uganda (SS4207) and Zambia (2016-Mar-011).

This was an opportunity sample, and the breakdown of respondents reflects the local activities of Leonard Cheshire Disability and the relevant DPOs who distributed the request for participants, as well as the personal networks of the researchers and other individuals involved in the Bridging the Gap Research programme ( Table 1 ).

Impairments of participants in study.

In general, the distribution of impairments among the participants was similar across the three settings. The majority of impairments were either congenital – such as albinism or restricted growth – or else resulted from illness or trauma which occurred before the age of 18. The impact of polio was disaggregated from the other mobility impairments because it was so dominant, although it should be noted that polio is no longer endemic to these three countries. In general, it was interesting to note that the majority of the impairments were preventable: for example, blindness resulting from measles, cerebral palsy resulting from malaria, paralysis resulting from polio or a road traffic injury, and impairments resulting from violence. Perhaps because the intention was to sample persons with disabilities of working age, there was no one who was primarily affected by the typical late-onset conditions which are familiar from high-income settings, such as diabetes, or stroke, although there was one individual with arthritis.

Between a tenth and a third of participants had failed to complete school, mainly owing to barriers. With these exceptions, the remaining participants were well educated, whether they had attended special schools or mainstream schools. While they came from diverse socio-economic backgrounds, the participants generally appeared to have very good intelligence and emotional intelligence, meaning that they were better able to benefit from their education and overcome the obstacles they faced, whether around travel to school or in the classroom itself. It should be noted that according to the psychological literature, intelligence has been found to be one of the key factors underlying resilience. Because they showed individual promise, several participants were successful in attracting interest from relatives or benefactors who were willing to pay school or university fees. Those who had been lucky enough to reach university often had their fees paid by the government ( Table 2 ).

Highest educational level of study participants.

Those who did not complete secondary schooling were more likely to be in rural areas, where factors like lack of money to pay school fees explain the lack of formal qualifications. Some individuals who did not complete school had gone on to undertake vocational rehabilitation courses, for example, as a cobbler or as a knitter. Individuals attaining diplomas tended to have undergone teacher training or attended agricultural college or become accountants. Uganda in particular had astounding educational achievements, with nearly two-thirds of participants achieving university degrees, twice the success of Kenya and Zambia. Two Ugandans had studied at Kenyan Universities, one at a Netherlands university. One Kenyan participant had gone to university in Rome, another had studied in Canada.

This evident success masks the barriers that participants had overcome in order to complete their education. For example, a Kenyan woman with mobility impairment had been unable to attend a school which was 3 km away, until her grandfather made her walking sticks and so from age 10 she could manage the journey. She reported that ‘you had to be tough’ in the face of an unfriendly educational environment’ (Respondent 301). Another Kenyan (Respondent 326) reported losing 8 years of schooling after becoming disabled. Those who attended school (e.g. Respondent 318) faced neglect, problems in accessing the toilet and in having to queue for long periods. But the biggest challenge was the attitudes of others who might mock the disabled person (response 322) or ostracise them (Respondent 312) or bully them, such as the mobility-impaired Ugandan child whose school peers used to take away his walking stick ‘to test him on how he would walk without them’ (Respondent 205). One Ugandan woman with restricted growth reported that teachers as well as pupils would mock her (Respondent 206). Some deaf participants reported being so frustrated at the communication and information barriers they faced that they dropped out of school for periods of time (e.g. Respondent 214). Others had changed schools, sometimes more than once, so as to avoid difficulties.

Where they faced barriers, these participants used ingenuity to overcome those barriers. For example, one Kenyan deaf woman described how she had attended mainstream school. When asked how she coped in a big class, where she could not hear and there was no sign language interpreter, she explained that she copied the notes of the cleverest pupil. Where she did not understand the notes, she looked at another schoolmate’s notes, until she had learned the lesson. In a rote-learning system, she was successful because she worked hard and memorised the notes, and thus passed her examinations. She went on to attend teacher training, and then obtained an education degree and finally postgraduate education. These achievements are more remarkable when it is known that she came from an impoverished background – her parents were uneducated agricultural workers – and faced prejudice – neighbours had told her father that she would never amount to anything and that her deafness was the result of witchcraft. She reported being the only member of her family to have finished school, let alone having tertiary education, and she was now supporting the education of her siblings.

Similar stories were heard from many participants. A regular refrain was the proud participant who said, ‘I was the only member of my family to finish school’, such as the Zambian who told me: ‘It’s like each time I reach a certain stage, I realize I can still do something else’ (Respondent 104). It was common for participants to be sponsoring the education of other siblings or younger relatives. These achievements highlight the comparative success of these disabled respondents when compared with non-disabled family members and the impact of their success on their entire families.

In this study, individuals were specifically recruited on the basis of their economic success, so it is not surprising that almost all were employed in the public or private sector or earning a living as farmers or traders. Many individuals who reported, for example, working for a DPO as their main job, also mentioned that they supplemented their salary by subsistence farming, or via commercial activities such as owning and hiring out motorcycles, or tailoring or trading ( Table 3 ).

Livelihood outcomes for participants.

DPO, disabled people’s organisation; NGO, non-governmental organisation; NOS, not otherwise specified.

People had had to adapt to different and changing opportunities: for example, the man with visual impairment who had started out as a teacher in a mainstream school, then worked at a special school, then ran a Braille press, then worked for a church organisation. As has been noted, in Uganda, DPOs are very strong. Disability rights issues have a high profile, and disabled people have reserved places at all levels of government: for example, several individuals reported their employment as ‘politician’. Conversely, DPOs appear weaker in Zambia. This may be why very able people with disabilities in Zambia were working as professionals – teachers, accountants etc. – whereas in Uganda these very able people might be working for DPOs.

Participants discussed various barriers in mainstream employment. Some had faced discrimination from employers or from co-workers: for example, this was mentioned by half of the Kenyan participants. This had either barred access to mainstream employment entirely or hindered further promotion for those who had been successful in getting jobs. People tried hard to be independent, for example the Kenyan participant who strived to cope for work, not asking for help ‘unless it is very necessary’ (Respondent 333). The negative attitudes towards people with disabilities also affected some participants who needed capital, such as the Ugandan woman who sought a loan from a microfinance institution and was asked ‘but will you manage to pay us back our money?’ (Respondent 229).

A common response to limited employment options was to resort to farming or other self-employment. Some respondents worked in the garment industry – as tailors, embroiderers, knitters or cobblers. In rural areas, respondents kept pigs, bees, or chickens or had a fish farm or produced fruit or peanut butter. For those who had not even completed school, there were few other options – although one Ugandan (Respondent 234) had taught himself photography and made a living as a photographer, supplemented by farming.

For example, one Zambian participant (Respondent 108) had experienced a T4 spinal cord injury while at college, completing most of his education from hospital. He was not aware of any relevant DPO. However, as he said, ‘OK this is just a disability, I can still use my hands and I can still use my brains, let me see what I can do’. Facing discrimination in the open job market, he saved money to start his own business. He ran a grocery shop (retail and wholesale) and employed two people. Furthermore, he was sponsoring the education of his late sister’s child and another unrelated child.

Ugandans working in the DPO sector often mentioned they had taken this career path after facing discrimination in mainstream roles, for example, the legal assistant who co-founded a DPO in response to her limited employment options (Respondent 241). However, a number of other participants stated they had not experienced discrimination or that they had been well supported in the workplace.

Above all, the clear thread that runs through the stories of people who were disabled in childhood is the vital importance of education (Lamichhane & Okubo 2014 ). For those who become impaired as adults, the key is to ensure they can gain relevant vocational skills for the local market and where necessary achieve access to the unconditional cash transfers (Handa et al. 2018 ) or microfinance loans which are required to set up a business or in farming or to improve productivity of these economic strategies. Again, participants who lacked education were sometimes disadvantaged when they developed disability in midlife and could no longer work the land and had no or few other economic options (e.g. Respondent 232).

Family life

The birth family of these participants could be both a hindrance and a support. For example, many participants reported negative attitudes or ignorance among relatives. For example, a birth mother left because she could not cope with her son’s needs (Respondent 320); a grandmother initially encouraged the parents to leave the child to die (Respondent 319); a father walked out on the family because he thought educating the disabled child was a waste of time (Respondent 318). Similarly, an older brother ‘does not accept or respect me’ (Respondent 312), or in other cases (e.g. Respondent 311) children went away to boarding school to gain an education, but then struggled to reintegrate into their birth family.

Yet this was not the whole story. Many other participants highlighted the love and support of the mother, father, uncle, aunt, brother, sister or grandparent who enabled them to believe in themselves and fight for inclusion. Sometimes the support was very practical, such as the young man whose brothers would carry him 5 km to get to school, and then carry him between classes and to the toilet (Respondent 234). Other participants told us ‘I cannot even begin to think of how my life would have been without family support’ (Respondent 305) or ‘My parents love me, and they show the others that I am a child to them just like the others’ (Respondent 330). The mother who told her blind son ‘You, of all my children, must finish school’ echoed the importance with which education was regarded by many parents of disabled children.

True acceptance for many disabled people means not just getting an education and finding a job, so as to achieve self-sufficiency, but also finding a partner and having a family. Of the 31 Kenyan participants, 23 were married or in long-term relationships, and in all, they had 54 biological children. Of the 39 Ugandan participants, 22 were married or in long-term relationships, with a total of 84 biological children from this cohort. Of the 34 Zambian participants, 26 were married or widowed, with a total of 110 biological children. In addition, it was a very common theme to hear participants proudly mention that they were supporting their siblings through education or they were looking after their elderly parents. Forming a family also added to economic security, for example through having another, often non-disabled, person to assist in farming and other livelihood activities, as well as in household and parenting tasks, and having children or siblings who grow up as economically active family members able to support the disabled individual in old age.

People did face difficulties in having a family. Several men and women reported that partners left them after they developed a disability (e.g. Respondent 204, 223, 228). Others had to overcome the prejudices of their partners’ families (e.g. Respondent 299). Although their economic success could make men eligible as partners, despite disability, this seemed less possible for women. For example, a Kenyan woman who made a living as a hawker blamed the prejudice of her mother-in-law for her divorce. A Kenyan participant (Respondent 302) with phocomelia (missing arms) had gained a Bachelor’s degree and then a Master’s degree from the UK and had subsequently flourished in the civil service. She said: ‘You do what you can, at least to change the mind of those negative ones, and there are also positive ones who come to embrace you.’ She was now looking forward to retiring to a property with land that she had invested in. Although impairment had curtailed romantic relationships, this had enabled her to focus on her career. After all, as she reported: ‘for a disabled person … sometimes having those relationships, they make you more sad.’ At the time of interview, the Zambian participant (Respondent 108) whose economic success is reported above remained unmarried, lived alone and reported that he was keen to start a relationship.

This theme of gender inequalities was taken up by a Ugandan woman with restricted growth who told us that she was determined to avoid men. She had other women friends with restricted growth who had been befriended by non-disabled men, who would visit them in the night for sex and who then leave them when they became pregnant. The same story was also told to us by people with albinism and other visible impairments: it appeared that certain unscrupulous non-disabled men were only interested in experimenting with sex with ‘exotic’ women but had no intentions of marrying them. As one woman from Uganda reported, non-disabled men ‘use and discard’ women with disabilities (Respondent 225).

Discussion and conclusions

The intention of this paper was to report on the evidence of success among some people with disabilities in Africa. The data shared here challenge the negative assumptions that imply people with disabilities can never do well, or always need hand-outs. The participants in this study had become extremely self-directed, resilient and positive individuals, who were contributing not just to the well-being of their families but also to the economic development of their society. For example, the Kenyan disabled man (Respondent 314) who said: ‘I want to show my fellow PWDs that we can make it, and when I fully recover I have a vision that I want to create job opportunities for others’. Begging was not the only option for persons with disabilities (Groce et al. 2013 ).

In the absence of government support, these individuals were overcoming obstacles and making progress on their own. Another participant said: ‘If I start pitying myself I will fail, and nobody is caring about me and nobody is willing to help me, so I have to cope with whatever comes ahead of me’. This highlighted how, in the absence of a welfare state or other supports, many individuals with disabilities in developing countries have no choice but to rely on their own resources if they want to survive, let alone thrive.

This study adds to our knowledge about persons with disabilities in Kenya, Uganda and Zambia, joining other grassroots studies but expanding our understanding of the circumstances in which people with disabilities can achieve success on an equal basis to others. Grassroots qualitative studies add richness to the picture of disability in sub-Saharan Africa.

This qualitative study was not representative of all persons with disabilities. To follow up these findings, a larger quantitative study, representative of adults with disabilities, could adopt a case–control methodology to understand the differences between those individuals who achieve success and those who are unable to overcome barriers. It is urgently important to understand what factors make the difference, and where the levers of success are amenable to government or donor interventions. Moreover, this study only included people with sensory and physical impairments. It would be important to conduct specific studies of people with mental health conditions and people with intellectual disabilities who are flourishing, in order to reveal what factors account for their success.

There are risks associated with reporting these success stories. For example, the stereotype of failing Africans with disabilities could be replaced by contrasting stereotype of ‘super crip’ courageous Africans with disabilities overcoming adversity. A reaction could also be: if these individuals are succeeding thanks to their own efforts, why cannot other individuals with disabilities do likewise? This is why it is important to understand success not just in terms of individual resilience but also in terms of structural factors that enable individuals to achieve. Rather than shallow stereotypes, offering the full range of complex stories of real individuals counters this one-dimensional representation.

The stories shared here suggest that investing in people with disabilities, and in barrier removal efforts in education, employment and the wider environment makes good sense, in terms of economic development. For example, the Ugandan government policy of financing university enrolment of students with disabilities appears to have increased the likelihood of Ugandans with disabilities having degrees, as compared to persons with disabilities from neighbouring countries. Just as other evidence from the non-disabled population shows individuals and families succeeding in escaping poverty (Krishna et al. 2006 ; Lawson, McKay & Okidi 2006 ). It was also evident from these data that some determined people with disabilities in Kenya, Uganda and Zambia were succeeding, against considerable odds, in enjoying success on an equal basis with others. These success stories may still be minority experiences, but they can contribute to challenging the negativity and prejudice that surrounds disability in Africa, and indeed other developing countries. The goal of governments and other development actors should now be to implement interventions that address the many barriers that prevent more people with disabilities achieving success.

Acknowledgements

This research project was part of UCL/Leonard Cheshire Disability ‘Bridging the Gap: Disability and development in Southern Africa’ programme, led by Prof. Nora Groce at the Leonard Cheshire Disability-Inclusive Development Centre at UCL, with support from Maria Kett and Ellie Cole. The authors thank all of them, particularly Mary Wickenden for support with ethics clearance and advice on analysis. They also thank Richard Bwalya, Joyce Olenja, Julius Omona and Andrew State for supporting the research. The authors are also very grateful to Anna Horton for her invaluable help with the analysis.

Competing interests

The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.

Authors’ contributions

T.S. devised the project and conducted the first 33 interviews alongside colleagues. A.M., E.N. and J.S. conducted the remaining interviews in Uganda, Kenya and Zambia, respectively. T.S. led the analysis and drafted the article; other authors contributed to the analysis and reviewed the article.

The Bridging the Gap programme was funded by UK Economic and Social Research Council and UK Department for International Development.

How to cite this article: Shakespeare, T., Mugeere, A., Nyariki, E. & Simbaya, J., 2019, ‘Success in Africa: People with disabilities share their stories’, African Journal of Disability 8(0), a522. https://doi.org/10.4102/ajod.v8i0.522

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Info message, case studies, inclusion of persons with disabilities in humanitarian action, 2019.

Published at the same time as the IASC Guidelines on the Inclusion of Persons with Disabilities in Humanitarian Action , this report aims to support their uptake and promote learning by example. This report presents 39 short case studies on inclusive practices for persons with disabilities in humanitarian action and disaster risk reduction (DRR). It is designed for humanitarian stakeholders with limited experience of working with and for persons with disabilities, as well as for organizations of persons with  disabilities (OPDs) planning to engage in humanitarian action and DRR. The report draws lessons from field practices, but does not provide technical guidance. The IASC Guidelines are the reference document to seek in-depth theoretical and technical information.  

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U.S. Government Accountability Office

People with Disabilities: Information on the Health Care Workforce and Provider Training

In 2021, about 13% of people in the U.S. reported having a disability, including trouble walking, cognitive or hearing impairments, and difficulty living independently. People with disabilities also experience challenges accessing health care and may not always receive appropriate care.

Our Q&A report shows that most health care providers would benefit from more training on meeting the needs of people with disabilities—even though such training isn't widely required. Experts we spoke to suggested incorporating more disability content in clinical training, engaging the disability community in training development, and more.

What GAO Found

An estimated 13 percent of people in the United States reported having a disability in 2021, according to the Annual Disability Statistics Compendium analysis of U.S. Census Bureau data. The U.S. Census Bureau defines a disability as a physical, mental, or emotional condition that causes vision or hearing impairments, or makes it seriously difficult for a person to perform activities such as walking, climbing stairs, dressing, bathing, concentrating, remembering, or running errands alone. People with disabilities are less likely to be employed, and may be underrepresented in certain health care occupations compared to people without disabilities.

People with disabilities comprised an estimated 6 percent of employed people in the United States in 2021, according to GAO's analysis of compendium estimates. Among the standard occupation groups related to health care, people with disabilities comprised an estimated 8 percent of those employed in health care support, such as home health aides, and an estimated 4 percent of health care practitioners and technicians.

People with disabilities experience challenges accessing health care and are at increased risk of health disparities, such as lower life expectancy. Stakeholders GAO interviewed noted that disability training for health care providers is not widely required or standardized by the organizations that accredit provider training programs. While GAO identified several disability-related training programs, including some supported by the Department of Health and Human Services (HHS), stakeholders said that providers need additional training. Stakeholders noted that limited training can affect the care people with disabilities receive, including contributing to delays in receiving care, or the need to travel long distances. Stakeholders identified several best practices for disability training:

• Incorporate disability content into existing training.
• Offer direct engagement with the disability community.
• Target provider bias and disability stereotypes.

Why GAO Did This Study

GAO was asked to examine the prevalence of people with disabilities in the health care workforce, and to describe how providers are trained to meet the health needs of people with disabilities. This report describes the prevalence of people with disabilities in the United States by type of disability, employment status, and certain occupation groups. It also describes examples and stakeholder perspectives related to the training providers receive to meet the health care needs of people with disabilities.

GAO reviewed and analyzed information in the Annual Disability Statistics Compendiums, which are based on data from the U.S. Census Bureau's American Community Survey. GAO also interviewed officials from HHS and 14 stakeholder organizations representing a range of perspectives, including educators, trainees, researchers, providers, and the disability community; reviewed research studies and online training repositories; and conducted web-based research.

For more information, contact Leslie V. Gordon at (202) 512-7114 or [email protected] .

Full Report

Gao contacts.

Leslie V. Gordon Director [email protected] (202) 512-7114

Office of Public Affairs

Sarah Kaczmarek Acting Managing Director [email protected] (202) 512-4800

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Multiple Perspectives Examining How a Junior Reserve Officer Training Corps (JROTC) Program Affects Student Development: A Case Study

Liberty University

The purpose of this case study was to examine how a high school’s Junior Reserve Officer Training Corps (JROTC) program affects student development of personal responsibility and sense of accomplishme..

The purpose of this case study was to examine how a high school’s Junior Reserve Officer Training Corps (JROTC) program affects student development of personal responsibility and sense of accomplishment by fusing the perspectives of the school administrators, JROTC instructors, and school guidance counselors for a more holistic view. This case study fills a chasm by examining how the JROTC program measures up to the Congressionally mandated central mission statement of instilling in high school-aged youth, citizenship, personal responsibility, and a sense of accomplishment. The two theories guiding this study are Abraham Maslow’s motivational theory and Albert Bandura’s self-efficacy theory. The central research question focuses on what the benefits are that a high school JROTC program provides to the cadets enrolled. The research setting was five high schools inside three school districts throughout Georgia. An explanatory qualitative case study was selected since it afforded more flexibility and greater depth of research than a pure phenomenological study explaining how JROTC affected the development of personal responsibility and a sense of accomplishment. Data for this study was obtained through open-ended online surveys, open-ended structured interviews, and focus groups. The emergent themes were discipline, motivation, a sense of belonging, and confidence. It was concluded that the main benefit of JROTC was discipline which supported the sense of belonging and increased the self-esteem and self-efficacy behaviors of those enrolled in the JROTC program. Future research on JROTC can expand along this study’s guidelines to other geographic areas to see if similar results occur.

https://digitalcommons.liberty.edu/context/research_symp/article/2562/viewcontent

http://digitalcommons.liberty.edu/research_symp/2024/oral_presentations/36

05f76e38-8745-40d2-a39f-da9162d48f14

2024-04-16T17:00:00Z

Oral (LUO Remote) - Applied

https://digitalcommons.liberty.edu/cgi/viewcontent.cgi?article=2562&context=research_symp

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• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complicated disorder.

It causes extreme fatigue that lasts for at least six months. Symptoms worsen with physical or mental activity but don't fully improve with rest.

The cause of ME/CFS is unknown, although there are many theories. Experts believe it might be triggered by a combination of factors.

There's no single test to confirm a diagnosis. You may need a variety of medical tests to rule out other health problems that have similar symptoms. Treatment for the condition focuses on easing symptoms.

Symptoms of ME/CFS can vary from person to person, and the severity of symptoms can fluctuate from day to day. In addition to fatigue, symptoms may include:

• Extreme exhaustion after physical or mental exercise.
• Problems with memory or thinking skills.
• Dizziness that worsens with moving from lying down or sitting to standing.
• Muscle or joint pain.
• Unrefreshing sleep.

Some people with this condition have headaches, sore throats, and tender lymph nodes in the neck or armpits. People with the condition also may become extra sensitive to light, sound, smells, food and medicines.

When to see a doctor

Fatigue can be a symptom of many illnesses. In general, see your doctor if you have persistent or excessive fatigue.

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The cause of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is still unknown. A combination of factors may be involved, including:

• Genetics. ME/CFS appears to run in some families, so some people may be born with a higher likelihood of developing the disorder.
• Infections. Some people develop ME/CFS symptoms after getting better from a viral or bacterial infection.
• Physical or emotional trauma. Some people report that they experienced an injury, surgery or significant emotional stress shortly before their symptoms began.
• Problems with energy usage. Some people with ME/CFS have problems converting the body's fuel, primarily fats and sugars, into energy.

Risk factors

Factors that may increase your risk of ME/CFS include:

• Age. ME/CFS can occur at any age, but it most commonly affects young to middle-aged adults.
• Sex. Women are diagnosed with ME/CFS much more often than men, but it may be that women are simply more likely to report their symptoms to a doctor.
• Other medical problems. People who have a history of other complex medical problems, such as fibromyalgia or postural orthostatic tachycardia syndrome, may be more likely to develop ME/CFS .

Complications

Symptoms of ME/CFS can come and go, and often are triggered by physical activity or emotional stress. This can make it difficult for people to maintain a regular work schedule or to even take care of themselves at home.

Many people may be too weak to get out of bed at different points during their illness. Some may need to use a wheelchair.

• Kellerman RD, et al. Myalgic encephalomyelitis/Chronic fatigue syndrome. In: Conn's Current Therapy 2022. Elsevier; 2022. https://www.clinicalkey.com. Accessed Nov. 23, 2022.
• Gluckman SJ. Clinical features and diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome. https://www.uptodate.com/contents/search. Accessed Nov. 23, 2022.
• Ferri FF. Chronic fatigue syndrome. In: Ferri's Clinical Advisor 2023. Elsevier; 2023. https://www.clinicalkey.com. Accessed Nov. 23, 2022.
• Myalgic encephalomyelitis/Chronic fatigue syndrome: Information for healthcare providers. U.S. Centers for Disease Control and Prevention. https://www.cdc.gov/me-cfs/healthcare-providers/index.html. Accessed Nov. 23, 2022.
• Chronic fatigue syndrome. Merck Manual Professional Version. https://www.merckmanuals.com/professional/special-subjects/chronic-fatigue-syndrome/chronic-fatigue-syndrome?query=chronic%20fatigue%20syndrome. Accessed Nov. 23, 2022.
• Goldman L, et al., eds. Fibromyalgia, chronic fatigue syndrome and myofascial pain. In: Goldman-Cecil Medicine. 26th ed. Elsevier; 2020. https://www.clinicalkey.com. Accessed Feb. 4, 2020.
• Gluckman SJ. Treatment of myalgic encephalomyelitis/chronic fatigue syndrome. https://www.uptodate.com/contents/search. Accessed Nov. 23, 2022.
• Bateman L, et al. Myalgic encephalomyelitis/Chronic fatigue syndrome: Essentials of diagnosis and management. Mayo Clinic Proceedings. 2021. doi.org/10.1016/j.mayocp.2021.07.004.
• AskMayoExpert. Chronic fatigue. Mayo Clinic; 2021.
• Grach SL (expert opinion). Mayo Clinic. Dec. 19, 2022.
• Ganesh R (expert opinion). Mayo Clinic. Dec. 19, 2022.

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Stopping over medication of people with a learning disability and autistic people (STOMP) and supporting treatment and appropriate medication in paediatrics (STAMP)

Stopping over medication of people with a learning disability and autistic people (STOMP) is a national NHS England work programme to stop the inappropriate prescribing of psychotropic medications, an identified priority in the NHS Long Term Plan.

Alongside this, the national supporting treatment and appropriate medication in paediatrics (STAMP) programme aims to make sure that autistic children and young people and those with a learning disability get medication for the right reason, in the right dose and for as short a time as possible.

These programmes work particularly closely with people with lived experience and families and carers organisations as well as a range of health and social care professional bodies.

People with a learning disability are thought to be 16 times more likely and autistic people 7 times more likely to be prescribed an antipsychotic than the general population. It is this disparity that led to the creation of STOMP and STAMP as an NHS Long Term Plan commitment.

People should only be given psychotropic medication for the right reasons, in the lowest dose, for the shortest time.

STOMP and STAMP are not anti-medication. Instead, we want to help people stay well and have a good quality of life through the right use, review and optimisation of medication. This means thinking about alternative forms of treatment before prescribing medication, and having clearly defined circumstances in which the use of psychotropic medication is appropriate.

STOMP and STAMP are the responsibility of all professionals in primary care, secondary care, educational settings and social care. They promote information sharing and collaboration across sectors of care to minimise all forms of inappropriate prescribing.

Use of psychotropic medications

Psychotropic medications include antipsychotics, antidepressants, anxiolytics (benzodiazepines), anti-seizure medication (antiepileptics), sedatives (including hypnotics) and stimulants. They affect the working of the brain and impact on a person’s mood, thoughts, perceptions and behaviour.

However, the side effects of these medications can impact on a person’s quality of life. These include (but are not limited to):

• weight gain
• dyslipidaemia
• increased diabetic risk
• movement disorder such as extra-pyramidal side effects (EPSE)
• hormonal change such as hyperprolactinaemia
• ECT changes
• sexual dysfunction.

Psychotropic medications are licensed to treat a range of serious mental illnesses including psychosis, mood-related conditions such as depression and bipolar disease, all forms of anxiety, attention deficit hyperactivity disorder, insomnia and all forms of epilepsy. Each of these conditions has National Institute for Health and Care Excellence (NICE) guidance on treatment pathways. While this guidance is applicable to people with a learning disability and autistic people who have a confirmed diagnosis of serious mental illness, NICE has developed additional guidance, Mental health problems in people with learning disabilities [NG54 ], to ensure people with a learning disability are assessed and managed in line with their individual needs.

Certain psychotropic medications can be prescribed for behaviour that is thought to be challenging. This is not a diagnosis, more a social construct that may identify a person’s communication needs and the impact of environmental triggers. This is an unlicensed indication and when medication is used for behaviour thought to be challenging, it should be initiated, monitored, reviewed and stopped in line with NICE guidance. Specialist oversight is required, particularly for initiation.

NICE guideline Challenging behaviour and learning disabilities [NG11 ] identifies two situations in which the use of antipsychotics – in combination with psychological measures, never as monotherapy – may support a person with behaviour thought to be challenging:

• if psychological interventions do not achieve change
• if the risk to the person or others is severe.

The medication should be initiated by a specialist and they should:

• identify and measure the targeted behaviours that are thought to be challenging
• use the minimum effective dose for the shortest possible time
• regularly review the benefit of treatment and impact of side effects
• record the rationale for medication and the likely length of treatment
• write a strategy for reviewing and stopping the medication that must be shared with non-specialist colleagues.

Regular medication review

The impact of any side effects of psychotropic medication should be regularly weighed against the potential benefits of treatment.

To ensure continued prescribing remains appropriate, people should receive regular, person-centred, holistic and structured medication reviews from professionals who understand people with a learning disability and autistic people. The review should focus on physical, mental and behavioural wellbeing, with an emphasis on reducing health inequalities and promoting health and quality of life. It is important that people’s experience and feedback is captured when they attend a review.

From the age of 14, people with a learning disability are entitled to an annual health check , and this includes a holistic, structured medication review.

It may be helpful as part of any review to consider and offer alternatives to medication where appropriate, such as sleep hygiene or other non-pharmacological support.

How should organisations deliver STOMP and STAMP

All health and social care organisations are expected to:

• explore alternatives to medication
• ensure all staff have an understanding of psychotropic medication such as why it is used and the likely side effects
• ensure people with a learning disability and autistic people of any age and their circle of support are fully informed about their medication and its potential side effects, and involved in decisions about their care. Medication information should be available in a format that is accessible to the person; for example, easy read, video or plain English
• ensure that reasonable adjustments are identified, recorded and implemented in advance of any appointments and that people have been contacted to ensure adjustments are up to date or they have an advocate (who could be a family member or carer) to speak on their behalf if necessary
• ensure all people are able to speak up if they have a concern about receiving inappropriate medication
• maintain accurate records about a person’s health, wellbeing and behaviour
• ensure that medication, if needed, is started, reviewed and monitored in line with the relevant NICE guidance: what it is intended for when started; how often it will be reviewed and by whom; a plan to safely reduce or remove the medication if no longer thought to be beneficial; alternatives to medication used before and in conjunction with medication
• work in partnership with people with a learning disability and autistic people, their families, care teams, healthcare professionals, commissioners and others to stop over medication
• inform people about non-drug therapies and practical ways of support so they only have medication for the right reasons
• support autistic people and people with a learning disability to have regular medication reviews, and support people with a learning disability to access their annual health check. This should all be done in a holistic and person centred way
• support doctors and other healthcare professionals to fully involve people, families and support staff in decisions about medication
• specialist teams to work in partnership with primary care colleagues to educate, advise and support their delivery of STOMP and STAMP

If you are a health or social care professional, you can access local prescribing data, where available, using the interactive tool on the Health and Care of People with Learning Disabilities, Experimental Statistics 2022 to 2023 – NHS England Digital platform (this does not cover all areas of England), and you should look on your professional body’s website for its STOMP and STAMP commitments and guidance.

Professionals in all health and social care settings can join the STOMP and STAMP FutureNHS collaboration site to share best practice, participate in discussions and engage with other care professionals. This is a good way to stay connected with NHS England and other organisations, access resources and collaborate to improve delivery of STOMP and STAMP.

Tell others what you are doing using social media and the X hashtag #StompStamp.

For more information please contact [email protected]

For all professionals

• Royal College of Psychiatrists Faculty of Psychiatry of Intellectual Disability Position Statement PS05/21 STOMP and STAMP : for psychiatrists and other prescribers who may initiate, monitor and review psychotropic medications.
• GP prescribing booklet : for GPs and other healthcare professionals who prescribe and review psychotropic medication.
• Mind Ed Training : training resource around inappropriate prescribing for anyone supporting someone with a learning disability or an autistic person.
• Our NHSFutures page on putting STOMP and STAMP into practice.
• Our NHSFutures page on educational awareness.

For families and carers

• STOMP Programme core message leaflet ( available in easy read and in 9 languages ): created in collaboration with MIXIT Theatre group, this leaflet explains what STOMP is and goes through the best ways to support people with their medication.
• No medication…? Why…? : this leaflet explains why someone with a learning disability or autistic people may not be prescribed mental health medication to change behaviours that may be challenging.
• The Challenging Behaviour Foundation Medication Pathway : this pathway covers what families and carers should find out before their relative starts taking medication. It explores the alternatives to medication, how medication should be monitored and what a family member or carer should do if they have concerns about their relative’s medication.
• STOMP and STAMP family guide : this guide for families whose loved one has been prescribed medication recommends the questions to ask and where to find more support.

For autistic people

• National Autistic Society leaflet on STOMP : this leaflet explains what STOMP is and provides information for those who may be given mental health medications.

For people with a learning disability

• STOMP advocacy guide : this guide explains the role of an advocate in relation to the use of medication and in supporting people to have a better life.
• Easy read medication leaflets.

For social care organisations

• Voluntary Organisations Disability Group (VODG) preparing to visit a doctor to talk about psychotropic medication : social care professionals can use this resource to help people prepare for their medication review and record agreed actions in collaboration with their healthcare team.