case study on disabled persons

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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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Ten Incredible Stories of People Who Overcame their Disabilities to Achieve Greatness

There are dozens of incredible sagas of people overcoming disabilities to achieve great things. Here are just a few top-picks we think will leave anyone who reads them inspired.

Table of Contents

Nick vujicic, andrea bocelli, kyle maynard, bethany hamilton, mallory weggemann, muniba mazari, stephen hawking, stevie wonder, michael j. fox, start your web accessibility journey now.

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Disabilities present challenges to millions of people around the world.

While some disabilities are harder to overcome than others, there are some pretty remarkable stories out there of people who didn’t let their disabilities keep them from achieving great things. Here at accessiBe we are proud to highlight the accomplishments of so many of our disability community partners.

Hearing about incredible achievements in the face of obstacles is inspiring no matter the circumstance. When these accomplishments are credited to people with disabilities it can be even more mesmerizing because the majority of people can’t even relate to the starting point, let alone the end result. Here are just a few of these incredible people with jaw-dropping determination.

It doesn’t get more inspiring than Nick Vujicic. Vujicic was born in 1982 with no limbs. He often recalls that as a child he suffered ridicule and discrimination. Things got so bad for Nick that at one point he even attempted to commit suicide. With time, however, he learned to see his potential.

Nick taught himself to improvise to accomplish several skills, including playing musical instruments and using a computer. 

In 2005, Nick founded Life Without Limbs in order to spread hope and inspiration around the world. He currently gives motivational talks around the world, has written several books and is a regular on talk shows and TV programs. 

Nick’s fame spiked after starring in the touching short film The Butterfly Circus back in 2009.

Tenor, musician, writer, and musical producer of Italian origin, Andrea Boccelli has had an exceptional music career and has sold more than 75 million records.

Boccelli was born with congenital glaucoma that made him partially blind from the beginning of his life. 

Identifying his musical talent, Boccelli’s parents arranged for him to take music lessons from a young age. He studied the piano until the age of six despite his visual difficulties.

At age 12, the young Andrea suffered a serious injury during a football game. The effects of the blow on top of his congenital vision impairment left him completely blind . Endowed with a special spirit, he decided to focus entirely on music, specifically on singing. Boccelli became an internationally acclaimed vocalist. He is one of the few artists ever that brought classical music to the top of international pop charts.

Boccelli has received numerous international awards and even has a beach named after him on the Adriatic coast.

Despite being born with a rare condition known as congenital amputation that left him with arms that end at the elbows and legs that end near his knees, Kyle learned early on to live life independently. 

Kyle’s feats are simply remarkable. In 2012, Kyle became the first quadruple amputee to climb the 19,340 feet to the top of Mount Kilimanjaro without the aid of prosthetics. Four years later in 2016, he reached the summit of Argentina’s Mount Aconcagua. Standing at 22,838 feet, Aconcagua is the highest peak in both the Western and Southern Hemispheres. Many of Kyle’s accomplishments are done to raise awareness for special causes such as injured veterans and children in need.  

Today, Kyle is a motivational speaker, author, entrepreneur, and ESPY award-winning mixed martial artist.

In 2003, Bethany survived a shark attack in which she lost her arm. 

Bethany didn’t let her injury keep her down. Already an avid surfer, Bethany was back in the water within three to four weeks of the attack. She turned pro and has competed internationally ever since, scoring six first-place trophies and several other prestigious sports awards over the past fifteen years. 

In addition to competing, Bethany runs courses on motivation and life transformation-based and powered on her own experiences and inspirational story.

In 2008, Mallory Weggeman went to the hospital to receive her third and final epidural injection that she was receiving to help treat back pain caused by postherpetic neuralgia. 

Tragically, the operation went wrong. The treatment that was supposed to ease her debilitating pain instead left Mallory a paraplegic with complete loss of movement from her abdomen down. She was 18 years old. 

Mallory had been an avid swimmer from her youth. She made the decision to not let her disability take her away from what she loved. Less than a year and a half after returning to the pool, Mallory broke her first set of world records at the 2009 Can-Am Speedo Para Swim Meet. Over the next four years, she broke thirty-four American Records and fifteen World Records. 

Mallory is a twelve-time World Champion and a two Paralympic Medalist from the London 2012 Games. She continues to travel the world competing in swim competitions and inspiring audiences in speaking appearances across the globe.

Muniba became confined to a wheelchair after a serious car accident in her native Pakistan that severely damaged her spinal cord. 

During her many months of rehabilitation, Muniba began discovering her artistic talent. She painted self-expressive portraits as an outlet for her personal sorrow. Muniba’s unique and vibrant style almost immediately attracted attention. She became a highly sought-after artist, working on private contracts on a variety of projects in Pakistan and abroad.  

As her fame grew due to her exceptional art and unique story, Muniba began to take up motivational speaking and humanitarian activism. She has received numerous international awards for her work over the years and is the first Goodwill Ambassador to UN Women from her home nation of Pakistan.

Hawkings was diagnosed with ALS (Lou Gehrig’s Disease) when he was 21 years old while still a student at Cambridge. His doctors initially told him he had two years to live. He ended up living with the disease for more than five decades. 

One of the most well-known physicists in the world, Stephen Hawking had prestigious careers as a theoretical physicist, cosmologist, author, and Director of Research at the Centre for Theoretical Cosmology at the University of Cambridge.

One of his most famous books was A Brief History of Time and he is one of the few contemporary physicists and researchers to transcend the world of scientists to become a household name around the world.

Dr. Hawkings spent years paralyzed from head to toe. He communicated through a voice synthesizer, which he operated with the use of a single cheek muscle. Hawking was able to continue with his scientific research, publication, and lecturing. His contributions to his field are numerous and include revolutionary new theories in physical cosmology. He was the recipient of no fewer than fifteen major awards, nearly all of which earned long after his body had become incapacitated by his ALS. 

Hawking passed away in 2018 at the age of seventy-six.

Stevie Wonder was born 6 weeks prematurely and the blood vessels in his eyes had not yet developed. The oxygen-rich atmosphere in the hospital incubator resulted in retinopathy of prematurity, a condition in which the growth of the eyes is aborted and causes the retinas to detach causing blindness. 

Despite being blind from birth, Stevie excelled at music from a young age. Stevie was identified as a child prodigy and signed his first record label at age eleven. He has recorded more than 30 U.S. top ten hits including famous tracks like “Signed, Sealed, Delivered I’m Yours,” “Superstition,” “You Are the Sunshine of My Life,” and “I Just Called to Say I Love You.” He has over 25 Grammy Awards to his name. 

Wonder has also spent years in political activism. He was one of the key campaigners to make Martin Luther King Jr.’s birthday a national holiday in the U.S. In 1985, he was honored by the United Nations for his stance against racism in South Africa. In 2009, he was named a United Nations Messenger of Peace for his years of efforts in peaceful political causes.

Michael J. Fox was diagnosed with Parkinson’s Disease when he was 29 years old, after already achieving worldwide fame for his roles in the Back to the Future movies and the television show Family Ties.

Despite being told he should retire, Fox continued with his acting career and went on to produce several well-received productions over the next ten years including the wildly popular sitcom, Spin City. Fox retired from full-time acting in 2000. 

Since retirement, Fox has thrown most of his energy into advocacy for those living with Parkinson’s disease. His foundation has raised over $230 million for Parkinson’s research.

A Little Inspiration Goes a Long Way

If there’s one thing these and similar stories show, it’s the amazing potential of all people, regardless of their physical abilities--or lack thereof. It’s people like these, and millions more, that inspire us at accessiBe to do what we do. We believe in the importance of giving all individuals access to the information technologies that define our age and won’t let anything stand in our way, either.

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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.

In other news

Opds advocate for disability representation in global climate policies.

T his week, e ight organisations of persons with

• Read more about OPDs advocate for disability representation in global climate policies

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Persons with disabilities tell their stories

Over one billion people live with some form of disability and this number is growing as a result of population increase, ageing, and the increasing number of people living with noncommunicable diseases. Everybody is likely to experience disability at some point in their life, especially when getting older.

Persons with disabilities experience significant barriers and are often excluded from accessing and receiving everyday healthcare services. This can be seen in three main areas:

• Access to effective health services: persons with disabilities often experience barriers including physical barriers that prevent access to health facilities; informational barriers that prevent access to health information; and attitudinal barriers leading to discrimination which severely affects the rights of persons with disabilities.
• Protection during health emergencies: persons with disabilities are disproportionately affected by public health emergencies such as the COVID-19 pandemic because they have not been considered in national health emergency preparedness and response plans. 
• Access to public health interventions across different sectors: public health interventions do not reach persons with disabilities because the information has not been provided in an accessible way and the specific needs and situation of persons with disabilities have not been reflected in the interventions.

Personal stories raise awareness and encourage action through showcasing firsthand experiences. Within this context, WHO and partners teamed up to develop a series of videos to raise awareness about the significant barriers that persons with disabilities experience in accessing healthcare services and health information as well as highlighting the issues they encounter during a health emergency and humanitarian crisis.

The first video features persons with disabilities from India, Kenya, Nigeria and Zambia sharing their experiences when accessing healthcare services.

Persons with disabilities share their experiences of accessing health services - YouTube

The second video showcases the experiences of persons with disabilities from India, Kenya, Nigeria and Zambia when accessing health information and sexual and reproductive health services.

Persons with disabilities share their experiences of accessing health information - YouTube

The third video shows issues and challenges faced by persons with intellectual disabilities living in Beirut, Lebanon – a country facing a health emergency and humanitarian crisis.  The video includes key recommendations for governments on ways to build healthcare services that are inclusive of persons with disability.

Experiences of persons with disabilities in health emergencies and humanitarian crises - YouTube

These videos highlight the urgent need for a disability inclusive health sector.

More information on the videos can be found here .

More about WHO work on disability can be found here .

The Case for Improving Work for People with Disabilities Goes Way Beyond Compliance

by Laura Sherbin and Julia Taylor Kennedy

Summary .   

A new study from the Center for Talent Innovation found that, according to the 2015 US government’s definition of disability, a huge portion of the white-collar workforce has a physical or mental impairment that substantially limits a major life activity: 30% of a nationally representative survey of 3,570 white-collar employees. Not only do employees with disabilities comprise a large talent pool, it’s a remarkably innovative one: 75% of them report having an idea that would drive value for their company (versus 66% of employees without disabilities). Yet, individuals with disabilities frequently encounter workplace discrimination, bias, exclusion, and career plateaus — meaning their employers lose out on enormous innovation and talent potential. For too long, companies have viewed employees with disabilities through the lens of compliance and accommodation. There’s no better time to start to look at disability through a different lens: of inclusion and infinite possibility.

As Chieko Asakawa walks around IBM’s campus, she explores new ways of getting from point A to point B. She recognizes the faces of colleagues approaching her and greets them. She reads snack labels and decides whether to eat them. Although she is blind, Asakawa doesn’t need a human or canine companion to complete these tasks. She’s helped invent a smartphone app that, as she explained in a recent TED talk , “understands our surrounding world and whispers to me in voice or sends a vibration to my fingers. Eventually, I’ll be able to find a classroom on campus, enjoy window shopping, or find a nice restaurant while walking along a street.”

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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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The qualitative data collected for the study contains sensitive, potentially identifiable, personal information so will not be available in its entirety. Requests for suitably anonymised sections of the data can be made to the corresponding author.

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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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Correspondence to Pauline Heslop .

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Ethical approval for this research was granted from the Faculty of Social Sciences and Law Committee for Research Ethics, University of Bristol (ID number 30501). Consent to participate in the study was received in writing for those interviewed in person. For those interviewed by phone, consent to participate was recorded with a digital recorder prior to the interview, as agreed by the ethics committee.

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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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Watson N, Vehmas S, editors. Routledge Handbook of Disability Studies. 2nd edition. New York : Routledge; 2019 Oct 21. doi: 10.4324/9780429430817-6

Routledge Handbook of Disability Studies. 2nd edition.

Chapter 6 disability and human rights.

Lucy Series .

The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) was the first human rights treaty to be developed by disabled people, for disabled people. Adopted by the UN in 2006, the Convention embodies and enshrines key tenets of contemporary disability scholarship and activism – from ‘nothing about us without us’ to a social understanding of disability. The CRPD is fertile terrain for disability scholarship – empirical, theoretical and critical. This chapter provides an overview of the history of human rights, the development of the disability Convention, and its main features and achievements. The chapter introduces some key areas of discussion and debate emerging in the literature on disability and human rights.

• Human rights prior to the disability Convention

Human rights are legal and moral norms that aim to both define and protect fundamental freedoms and entitlements for all humans. An appreciation of contemporary disability human rights, as embodied by the CRPD, requires an understanding of what came before.

Rights, revolutions and the Enlightenment

There are examples of charters or bills of rights dating back to the ancient world, but our modern understanding of rights (in the West, at least) is closely linked to Renaissance humanism and the Enlightenment ( Nickel 2017 ). In the seventeenth and eighteenth centuries rights became the ideology of revolutionaries, enshrined in the English Bill of Rights (1689), the French Declaration of the Rights of Man and the Citizen (1789), and the Bill of Rights in the United States Constitution (1791). Klug (2000 : 71–72) describes this ‘libertarian wave’ of rights as primarily concerned with ‘liberty from state tyranny and religious persecution’, constructing the state as ‘always and forever a threat to individual freedom’.

This body of rights rests on a fictive liberal subject – law’s ‘classic contractor’ who is ‘morally and legally accountable for his actions because his actions are guided by reason’, standing ‘alone, independently of all other individuals’, and capable of enforcing his own rights (Naffine 2003 : 66). It is underpinned by the often inherently ablest liberal philosophies of John Locke, Immanuel Kant, Jean-Jacques Rousseau, Thomas Paine and John Stuart Mill. Critiquing or adapting liberal theory for people with cognitive impairments is now a major intellectual project for contemporary political theory and moral philosophy (e.g. Kittay and Carlson 2010 ; Clifford Simplican 2015 ; Nussbaum 2009 ; Vorhaus 2005 ).

Human rights: The post-war settlement

‘Human rights’ as we know them today emerged from the aftermath of the Second World War. They are embodied by the Universal Declaration of Human Rights (UDHR), adopted by the UN in 1948, and the succession of binding international Conventions that followed. The norms underpinning these instruments transcended and expanded upon earlier liberal theories of rights.

Human rights as an international concern

Whereas previously rights were legislated at the national level, contemporary human rights are both guaranteed by, and play a role in guaranteeing, a global political order. During the twentieth century the abuse of minorities came to be regarded as a threat to peace and stability (Bates in Moeckli et al . 2014 ). The preamble to the UDHR describes the ‘equal and inalienable rights of all members of the human family’ as ‘the foundation of freedom, justice and peace in the world’. 1 Within this ‘public morality of world politics’, each person ‘is a subject of global concern’ (Beitz 2009 : 1).

The use of international legal and diplomatic machinery to enforce and monitor human rights marks the end of a ‘virtually unquestioned supremacy of the doctrine of national sovereignty’ (Klug 2000 : 96). Critics of human rights argue that this form of ‘global governance’ threatens national liberal democracy (Holbrook and Allan 2017 ) and privileges ‘new forms of “ethical” elite paternalism’ (Chandler 2001 : 72). Critical legal academics note concerns about Western moral imperialism (Donnelly 1984 ), others question whether rights really are ‘a barrier against domination and oppression, or the ideological gloss of an emerging empire?’ (Douzinas 2007 : 1). Few proponents of human rights engage with these critiques, often viewing them more as a ‘matter of faith rather than reason’ (Besson in Moeckli et al . 2014 : 35). Yet they do have an impact on the willingness of states to sign and ratify binding Conventions like the CRPD, and on the domestic reception of criticisms from the international human rights community.

Universalism: dignity and equality

The rights-based constitutions of the Enlightenment coexisted alongside the denial of rights to large swathes of the population – notably women, children, slaves, religious and ethnic minorities, and colonised peoples. In contrast, a central tenet of contemporary human rights is universalism . The twin foundations of this universalism are respect for the ‘inherent dignity’ of all humans, and equality. Article 1 of the UDHR states that ‘all human beings are born free and equal in dignity and rights’.

The concept of ‘human dignity’ notoriously evades straightforward definition (Feldman 1999 ). Klug (2000 : 101) suggests that for the drafters of the UDHR, surveying the ‘inhumanity’ that had been practised by individuals towards their fellow human beings, ‘freedom was an insufficient basis on which to build the peaceful and tolerant world they sought to achieve’. It has been suggested that dignity, unlike liberty, involves recognising and responding to human vulnerability (Neal 2012 ; Turner 2006 ).

Dignity, rather than liberty, as the foundation of human rights, fundamentally transforms the relationship between the individual and the state. The state must do more than simply refrain from interference and oppression, and must take proactive steps as the guarantor of human rights (Klug 2000 ). A focus on civil and political rights alone ignores the material constraints on freedom posed by economic inequality (Marx 1844 ). But ‘dignity’ provided a conceptual vehicle for introducing the ‘economic, social and cultural rights indispensable for his dignity’ (Article 22 of the UDHR), including the right to ‘work’ (Article 23 of the UDHR), ‘rest and leisure’ (Article 24 of the UDHR), ‘to a standard of living adequate for the health and wellbeing of himself and of his family’ (Article 25 of the UDHR), to education (Article 26 of the UDHR) and to freely participate ‘in the cultural life of the community’ (Article 27 of the UDHR).

Although the UN General Assembly recognised in 1950 that ‘the enjoyment of civil and political freedoms and of economic, social and cultural rights are interconnected and interdependent’, they are afforded different status and protection under international law. Economic, social and cultural rights are subject to the doctrine of ‘progressive materialisation’ to the maximum of a state’s available resources. Civil and political rights – such as rights to liberty, to vote, and equal recognition before the law – must be realised immediately (van Boven in Moeckli et al . 2014 ). The distinction is also reflected in separate Covenants at the UN level, including the 1966 International Covenant on Civil and Political Rights and the 1966 International Covenant on Economic, Social and Cultural Rights. The 1950 European Convention on Human Rights (ECHR) chiefly enshrines civil and political rights.

The seeds of a disability human rights settlement

Several characteristics of the post-war human rights settlement were promising from a disability perspective: states must do more to protect rights than merely refrain from intervention, a concern with social, economic and cultural matters as well as civil and political rights, and the universalism and emphasis on equality inherent in human rights discourse requires reinforcement. Yet by the turn of the century, disabled people and disability organisations widely perceived that these instruments were failing to deliver this promise. There were mounting calls for a binding international Convention to specifically address the rights of disabled people. Yet if previous human rights instruments were universal in scope, why should such a Convention be needed?

Towards a binding Convention on the Rights of Persons with Disabilities

Everyone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status.

From the 1970s onwards there was slow recognition that disabled people were rights bearers under international law. The UN adopted non-binding ‘declarations’ on the rights of ‘mentally retarded’ (1971) and ‘disabled persons’ (1975). These declarations employed medical model definitions of disability and recognised equal rights only ‘to the maximum degree of feasibility’ (United Nations 1971).

[Persons with disabilities] frequently live in deplorable conditions, owing to the presence of physical and social barriers which prevent their integration and full participation in the community. As a result, millions of children and adults throughout the world are segregated and deprived of virtually all their rights, and lead a wretched, marginal life. (Ibid.: para. 3)

The second half of the twentieth century witnessed a global backlash against the institutionalisation of disabled people – in rhetoric at least, if not always in reality. Politically engaged organisations led by disabled people developed distinctive understandings of rights and equality, based around social and minority rights understandings of disability. They campaigned for equality, inclusion and rights to independent living. Key milestones at the national level – such as the Americans with Disabilities Act 1990 – preceded equivalent rights in international law. The Organization of American States adopted the first international prohibition on disability discrimination in 1999, in the shape of the Inter-American Convention on the Elimination of All Forms of Discrimination against Persons with Disabilities. In contrast, the European Court of Human Rights did not recognise disability discrimination until 2009 ( Glor v. Switzerland ).

The UN began to develop binding Conventions addressing the concerns of specific communities, including women (UN 1979), children (UN 1989), and migrant workers (UN 1990). It introduced innovative monitoring and enforcement mechanisms to prevent torture and inhuman and degrading treatment in places of detention (UN 2006). Despouy (1991 : 72) noted that disabled people were ‘at a legal disadvantage in relation to other vulnerable groups such as refugees, women, [and] migrant workers’. Disability advocacy organisations began to designate policy officers to follow human rights developments (Quinn and Degener 2002 ). There were calls for a disability Convention (Darrow 1996 ).

At the turn of the millenium, national and international disability organisations met in Beijing, People’s Republic of China, ‘to develop a new century strategy for the full participation and equality of people with disabilities’. Noting the failure of earlier human rights instruments to significantly improve the lives of people with disabilities, these organisations committed ‘to strive for a legally binding international convention on the rights of all people with disabilities to full participation and equality in society’ (Disabled Peoples’ International et al . 2000).

In 2001 a UN resolution sponsored by Mexico resulted in the establishment of an ad hoc committee to consider proposals for a Convention. The ‘Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’ met eight times to discuss and negotiate the text of the Convention (UN Enable).

The Convention was formally adopted by the UN on 13 December 2006 and entered into force on 3 May 2008. The CRPD human rights treaty was the fastest negotiated treaty at the UN, and the second fastest to be ratified, with the most signatures on its opening day (Stein and Lord 2009 ). It was the first UN human rights treaty to be negotiated and signed by the European Union (EU), as a ‘state’ in its own right. But the CRPD’s most significant legacies are the means by which it was negotiated and the ‘paradigm shift’ it promises in approaches to disability and human rights.

• The UN Convention on the Rights of Persons with Disabilities

A ‘paradigm shift’ in human rights

The UN Convention on the Rights of Persons with Disabilities has been widely hailed by scholars and activists as a ‘paradigm shift’ in approaches to disability and human rights (e.g. Kanter 2006–2007; Lawson 2006–2007 ; McKay 2006–2007; Kayess and French 2006–7). Kuhn ([1962] 2012) developed the concept of a ‘paradigm shift’ in his landmark book The Structure of Scientific Revolutions . ‘Normal science’ proceeds within a particular paradigm, based on a specific epistemology and ontological understandings that both define the nature of the problems and prescribe the approach to solving them. Anomalies begin to accumulate, which initially are disregarded but which eventually result in a crisis for the paradigm itself. Ultimately, the crisis is resolved by the introduction of a new paradigm, which can make sense of these anomalies, but only through an ‘epistemological break’ with the old paradigm.

The language of a ‘paradigm shift’ has been used to convey a sense that the existing paradigm of human rights has been ineffective for disabled people, and that what is required is not merely a tinkering with existing human rights instruments but a fundamental shift in their underlying epistemologies and norms. It signals that the CRPD will be perceived by many as disruptive, and will involve an intellectual ‘battle’ for acceptance, necessitating the ‘reconstruction of the field from new fundamentals’ and changing ‘some of the field’s most elementary theoretical generalizations as well as many of its paradigm methods and applications’ (Kuhn [1962] 2012 : 84).

The last decades have been marked by a shift in thinking. From viewing disability as a personal problem that needs to be cured (the medical model), we have come to see the source of the problem: the society’s attitude towards persons with disabilities. This means that we have to act collectively as a society in order to remove the barriers that hinder persons with disabilities from living among us and contributing to our society, and to fight against their isolation in institutions or in the back-rooms of family homes. Finally, there has been a shift from welfare policies and charity as the only tools for dealing with disability, to an approach based on human rights and equality. (2011: 639)

Implicit in the CRPD is an understanding by those who framed it that how we understand disability transforms how we respond to it, that questions of epistemology and ontology ultimately influence the material conditions and relationships of power that shape lives. The CRPD’s epistemological and normative break with what came before is signalled in both the considerable length of its Preamble – whose function is to assist in treaty interpretation and to give ‘traction to norm development and evolution’ (Lord in Bantekas et al . 2018 : 7) – and provisions requiring states parties to engage in ‘awareness raising’.

Article 8 of the CRPD obliges states parties to the Convention to adopt immediate, effective and appropriate measures to raise awareness throughout society – ‘including at the family level’ – regarding persons with disabilities, to combat stereotypes, ‘promote awareness of the capabilities and contributions of persons with disabilities’ and ‘foster respect for the rights and dignity of persons with disabilities’. This provision is the first of its kind to be included in an international human rights instrument. It is an example of the shift towards recognition of collective rights for minority groups. It signals that changing the way societies think and talk about disability is instrumental to realising its goals (Bariffi in Bantekas et al . 2018 ). So much will seem self-evident to disability scholars and activists, but what is not self-evident is the extent to which law – and in particular international human rights law – can drive these changes in societal perceptions and understanding of disability.

Key elements of the UN Convention on the Rights of Persons with Disabilities

The purpose of the CRPD is ‘to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity’ (Article 1). It consists of 50 separate articles. Articles 5 to 30 set out the substantive rights protected by the Convention, while the remaining provisions establish mechanisms for implementation and monitoring.

Officially speaking, the Convention does not establish any new rights, but rather ‘clarifies the obligations and legal duties of States to respect and ensure the equal enjoyment of all human rights by all persons with disabilities’ (e.g. the UN Office of the High Commissioner for Human Rights and the Inter-Parliamentary Union 2007: 5). Many of the articles have titles that draw on those used by the UDHR, the ICCPR and the ICESCR, including the right to equality and non-discrimination (Article 5), equal recognition before the law (Article 12), the right to life (Article 10), liberty and security of the person (Article 14), freedom from torture, or cruel, inhuman and degrading treatment (Article 15), liberty of movement and nationality (Article 18), freedom of expression and opinion (Article 21), respect for privacy (Article 22), respect for home and the family (Article 23), the right to education (Article 24) and health (Article 25), work and employment (Article 27), participation in political and public life (Article 29) and participation in cultural life, recreation, leisure and sport (Article 30). Most rights include provisions to the effect that states parties must take effective or all necessary measures to ensure their enjoyment ‘on an equal basis with others’. Waddington (2011 : 436) describes the themes of equality and non-discrimination as running ‘through the Convention like a red thread’. The benchmark against which successful implementation of the CRPD will be measured is the extent to which disabled people really do enjoy equal rights in comparison with others in their society.

Many substantive rights spell out in some detail the necessary steps to make equal enjoyment of previously recognised rights a reality. For example, the right to education is contained in several earlier human rights instruments (Article 26 of the UDHR, Article 13 of the ICESCR, Article 23 of the CRC and Article 2 of the ECHR). Article 24 of the CRPD spells out in considerable detail the measures that would be required to realise this for disabled children, from rights to ‘reasonable accommodation’ and support, to facilitating the learning of Braille, other forms of augmentative and alternative communication, to sign language, promoting the ‘linguistic identify of the deaf community’, and provisions concerning the training of teachers. The right to respect for home and the family, a civil and political rights stalwart (Article 12 of the UDHR, Article 17 of the ICCPR, Article 8 of the ECHR and Article 16 of the CRC), uniquely specifies in Article 23 of the CRPD that ‘Persons with disabilities, including children, [shall] retain their fertility on an equal basis with others’ and that ‘States Parties shall render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities’. For the first time in international human rights law, a right to ‘reasonable accommodation’ was explicitly spelled out, in the equality and non-discrimination provision of Article 5 of the CRPD, and defined in Article 2.

Despite the ‘official fiction’ that the CRPD creates no new rights, it does contain articles bearing entirely novel titles, and introduces many innovative measures and mechanisms (Kayess and French 2008 : 32). For example, articles concerning accessibility (Article 9), living independently and being included in the community (Article 19), personal mobility (Article 20), habilitation and rehabilitation (Article 26), speak to specific concerns for disabled people. Whether these are ‘new rights’, or simply rights that are so securely (and thereby invisibly) enjoyed by most non-disabled people as not to attract specific protection in human rights treaties, is a matter for debate. Other ‘new’ rights emerged as more detailed specifications of previously recognised rights. For example, Article 13 on the right to access to justice emerged from the negotiations of Article 12, on the right to equal recognition before the law. The sparse text of Article 17 – on protecting the physical and mental integrity of the person – was already recognised in human rights jurisprudence, but emerged as a stand-alone provision in the CRPD.

Implementation and monitoring of the Convention

The CRPD introduces an innovative framework for implementation and monitoring of the Convention. States parties must designate a ‘focal point’ within government to oversee implementation of the Convention (Article 33). Article 4 obliges states to adopt all appropriate legislative, administrative and other measures to implement the CRPD, and to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities. States must also designate or establish an ‘independent mechanism’ to ‘to promote, protect and monitor implementation of the present Convention’ (Article 33). This role is often undertaken by national human rights institutions (de Beco 2011).

The CRPD requires states to ‘collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention’ (Article 31). Statistical data is a ‘potent tool’ for undertaking comparative analyses of (un)equal treatment under discrimination law (Fredman 2011 : 183).

Article 34 of the CRPD established the Committee on the Rights of Persons with Disabilities (CRPD Committee) to oversee and monitor the Convention. Members are elected by states parties, who must consider, inter alia, equitable geographical distribution, representation of ‘different forms of civilization’, balanced gender representation and ‘participation of experts with disabilities’. Of the 18 independent experts elected in 2016 only one was not a disabled person (Löve et al . 2017 ). The CRPD Committee (2017) expressed concern that only one woman was elected.

States that have ratified the Convention must submit reports to the Committee at least every four years (Article 35). The Committee considers reports – possibly requesting further information – and makes observations and recommendations to individual states on the implementation of the Convention (Article 36). Although not specifically provided for in the Convention, civil society organisations frequently submit ‘shadow reports’ on the implementation of the Convention in their country, which inform the work of the Committee. Where states have also ratified the Optional Protocol to the CRPD (UN 2006), the Committee can consider individual complaints about human rights violations by states.

Legal status and influence

For states that have signed and ratified the CRPD, its status is binding in international law – not ‘soft law’ as some political figures have mistakenly suggested (Joint Committee on Human Rights 2012). In the event that governments do not promote, protect and ensure the rights contained in the CRPD for disabled people, they are in breach of their international legal obligations. However, one of the key difficulties for international human rights law is the question of who, if anyone, will enforce a treaty or take action if violations occur. This is precisely why provisions for the implementation and monitoring of human rights Conventions are so vital.

The extent to which individuals can take legal action to enforce, or vindicate, their rights under the CRPD differs between states. In ‘monist’ states, international Conventions become part of domestic law once it is ratified, meaning that domestic courts can consider the provisions of the CRPD and may even strike down national legislation if it conflicts with a treaty obligation. In contrast, in ‘dualist’ legal systems, like that of the UK, a ratified treaty does not become an enforceable part of domestic law unless parliament specifically passes legislation to this effect (as, for example, it did with the ECHR under the Human Rights Act 1998). The status of the CRPD in the domestic courts of dualist states is persuasive where domestic law is ambiguous or unsettled – it is not binding in law. Yet a recent comparative study of 13 jurisdictions found that the domestic courts of both monist and dualist states are increasingly considering and interpreting the CRPD in order to fill gaps in domestic law, and to update it, even if not always quite in line with the intentions of its drafters (Lawson and Waddington 2018 ).

• Key themes from the CRPD

‘Nothing about us without us’

It has become a truism that the CRPD, more than any other human rights treaty that came before it, embodies the spirit of the disability rights slogan ‘nothing about us without us’. Klug (2000 : 101) has described the UDHR as an ‘élitist enterprise’ that was not necessarily drafted by victims of repressive regimes themselves. Yet disabled people played a central role in the development of the CRPD. Kanter states that ‘never before in the history of the UN were the subjects of a treaty invited to play such a prominent role in the drafting process’ (2015: 8); she suggests that this has become a model for future human rights treaties.

The Ad Hoc Committee that negotiated the Convention eventually included over 400 representatives of civil society organisations from over 40 countries ( Kanter 2006–2007 ; McKay 2006–2007). Many disability organisations worked together as the International Disability Caucus (IDC) in order to develop and adopt a position of ‘unity’ among the diverse organisations and groups represented (Reina 2008 ). A working group was established in 2003 to develop a draft Convention text for future negotiations. Following successful lobbying by disability organisations, it included prominent disability scholars and activists such as Tina Minkowitz, Gerard Quinn and Theresia Degener.

the gallery space of the chosen conference room was inaccessible for people using wheelchairs. A move to a larger conference room (now the designated conference room for the remainder of the process) with equally inaccessible space for observers, forced disability activists to find space among delegates on the actual floor of the committee itself. This conferred a major advantage on participant NGOs, however, as they found themselves dispersed alongside delegates and IGO representatives. (2004: 96)

The CRPD is a landmark achievement for inclusive lawmaking – both for disability advocates and the human rights community. It stands in stark contrast to the minimal inclusion of disabled people in the development of many human rights instruments that purport to serve them – from the MI Principles in the 1990s, to the recent outcry over the absence of ‘meaningful consultation’ with disability organisations by the Council of Europe’s Committee on Bioethics in developing a binding protocol on involuntary treatment and placement of ‘persons with mental disorders’ (European Disability Forum 2018; CRPD Committee 2018). The CRPD has irrevocably shifted the benchmarks of legitimacy for the development of laws affecting disabled people. It has enshrined this principle into the treaty itself: Article 4(3) of the CRPD requires states parties to ‘closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations’. The CRPD Committee (2018) has recently adopted a General Comment on the participation of persons with disabilities in the implementation and monitoring of the Convention, elaborating a definition of ‘representative organisations’ that privileges user-led organisations and an approach to disability advocacy founded on the CRPD.

The remarkable achievement of the CRPD also casts an uncomfortable spotlight on difficult questions of representation in disability politics and advocacy. Reina (2008) describes how a position of unity for negotiations sometimes involved learning to live with unsolved problems and ambiguity – ‘an inevitable consequence of being simultaneously different and unified’. Lord (2004) notes that many of the most influential members of the IDC did not satisfy the ultimate ‘legitimacy test’ of being grassroots membership organisations, and that all members of the core group of disabled person’s organisations – the International Disability Alliance – were from the global north. Some groups of people directly affected by the Convention – most notably people with dementia – appear to have had little representation in the negotiations. And some commentators have questioned whether the strong position advocated for by the IDC on legal capacity and mental health detention reflects the views of most mental health service users (ibid.; Plumb in Spandler et al . 2015 ). There is, certainly, a danger that asking such difficult questions risks strengthening and legitimating existing practices that the Convention seeks to address, but it is also dangerous to leave unaddressed matters of ‘representational over-reach’ and questions about hierarchies of class, education, socially valued identity and access (Jones and Kelly in Spandler et al . 2015 : 54).

A human rights model of disability?

Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

The CRPD’s broad description of the target population is already reshaping states parties’ approach to disability (Kakoullis and Ikehara in Bantekas et al . 2018 ; Lawson and Waddington 2018 ). For example, in 2013 the Court of Justice of the European Union adopted the CRPD’s approach to disability, reversing an earlier medical model definition relied upon by the EU ( HK Danmark v . Dansk almennyttigt Boligselskab , 2013). The potentially far-reaching consequences of this approach are exemplified by its finding in Karsten Kaltoft v. the Municipality of Billund (2014) that morbid obesity may fall within this definition of disability, and thereby qualify for protection against discrimination under EU law. Yet not all those who might be considered to fall within target population of the Convention will necessarily identify as ‘disabled’. For example, several prominent users and survivors of psychiatry have contended that the social model of disability is not an adequate explanatory framework for their experiences (Spandler et al . 2015 ).

From vulnerable to empowered?

Article 3 of the CRPD establishes ‘general principles’ for the Convention. First among these is ‘Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons’. Other principles reference equality, non-discrimination, respect for diversity, participation and inclusion, accessibility and respect for the ‘evolving capacities of children with disabilities’, but ‘protection’ does not feature on this list. The language of ‘vulnerability’ does not feature in the Convention, and was actively resisted by DPOs during the drafting of Article 16 of the CRPD, concerned with exploitation and abuse (Schulze 2010 ; Keeling in Bantekas et al . 2018 ). This contrasts with characterisations of disabled people as inherently or especially vulnerable in feminist literature (e.g. Mackenzie et al . 2014 ; Fineman and Grear 2013 ) and in wider society.

Ideological conflicts between a view of disabled people as vulnerable and requiring protection – including through limits on rights to ‘freedom to make one’s own choices’ – and a view of such protective interventions as themselves part of the problem that the CRPD should address, recurred throughout the negotiations of the Convention. There were heated debates on whether the CRPD should prohibit all forms of mental health detention, treatment without consent and mechanisms restricting legal capacity and permitting ‘substitute decisions’ by guardians or others. During the negotiations on the drafting of Article 15, the IDC maintained that forced treatment and institutionalisation were forms of ‘torture’ that the CRPD should explicitly prohibit, an approach that was resisted by states parties (Fennell in Bantekas et al . 2018 ). It was certainly the intention of many disability advocates that the Convention should prohibit all forms of mental health detention and forced treatment, and all forms of guardianship or disability-related restrictions on legal capacity – including those premised on ‘mental incapacity’ (Minkowitz 2006 ; Dhanda 2006–2007 ).

The CRPD Committee (2014, 2015) interprets the Convention as prohibiting all forms of mental health detention, compulsory treatment, restrictions on legal capacity and substitute decision-making. The status of the Committee’s interpretation of the Convention is authoritative, but it is not legally binding upon states; few would have ratified the Convention if they shared this interpretation. There has been a backlash against the Committee’s position, from clinicians in particular (e.g. Freeman et al . 2015 ; Appelbaum 2016 ). Some prominent users and survivors of psychiatry have also expressed concern about this absolutist position (Plumb in Spandler et al . 2015 ; Jones and Shattell 2014 ; Rose in Bhugra et al . 2017 : 794). The question of whether the Convention does in fact prohibit all forms of mental health detention, treatment without consent and restrictions on legal capacity is a matter of ongoing discussion and debate (Bantekas et al . 2018 ).

Radical interpretations of the Convention, which divorce legal agency and the exercise of rights from the concepts of ‘mental capacity’ and ‘mental disorder’, have been described as ‘the most revolutionary of the new norms articulated in the CRPD (Minkowitz 2006 : 408). It is in this arena that the intellectual battles for a new paradigm are at their most contested and complex; there is insufficient space in this chapter to do justice to the wide-ranging issues and considerations. However, it is certainly an area that is in much need of input from disability and Mad Studies scholarship, user and survivor researchers, engagement with grassroots disability and user and survivor organisations, and – perhaps most importantly – those who are affected but who are not engaged in disability activism. We must take these important discussions and debates outside the elite arenas of legal, ethical and clinical scholarship.

• Paradoxes of rights

To summarise, then, human rights as they developed in the second half of the twentieth century only very gradually recognised the specific situation of disabled people, despite gross and widespread human rights violations perpetrated against the world’s ‘fastest growing minority’ (Kanter 2015 : 21). The CRPD is a landmark achievement for disability advocacy and human rights. It represents an inflection point in our understanding of what it means to be a bearer of rights, and the role of states and the global community in promoting, protecting and ensuring those rights. The CRPD is widely described as embodying a paradigm shift in approaches to disability and to human rights, but this paradigm shift is far from achieved. Intellectual battles continue to rage, and as Fennell (in Bantekas et al . 2018 ) has noted, it operates in tandem with an ‘old’ paradigm of disability and human rights at the level of the Council of Europe, several UN bodies and national law. No country yet complies with all the provisions of the CRPD, and many countries face a conflict of laws in deciding whether to apply the human rights norms of the CRPD or other legal instruments, such as the ECHR, which continue to be based on conflicting norms and obligations.

To suggest that this signals failure is to misunderstand human rights law, and indeed the nature of ‘revolutions’ in paradigms of thought. No human rights instrument was ever born with fully fledged jurisprudence, and human rights norms continue to develop and evolve throughout the lifetime of a treaty. There simply is no human rights treaty that has been fully implemented, or any country that fully complies with all human rights law. The critical question for the CRPD is what compliance could actually look like for some of its more radical norms and interpretations, and in this respect there is ample scope for further study and inclusive discussion and debate. That many of these new norms are resisted and contested by governments, law reform and professional bodies at the very least signals that they are finally being required to justify positions that have previously been regarded as unassailable and unquestionable.

the text alone does not guarantee that its values will be transposed into the worldview of policy and law-makers and that there will always be textual toeholds to be found in the Convention – in any convention – that can potentially allow States to temporise the profound reforms that its underlying philosophy demands. This is no more than what the Legal Realists have taught us several decades ago. (2009: 2017)

The wider field of critical human rights scholarship has observed that ‘rights’-based strategies can differentially empower and reinforce existing inequalities (Brown 2002 ; Rose 1985 ). Others express a broader scepticism about the power of law to achieve social transformation (Rosenberg 2008 ). Prominent disability activists and scholars have questioned the efficacy of ‘the drift towards a rights-based approach that now dominates disability politics’ (Oliver and Barnes 2006 ). These critical insights temper our expectations of the CRPD, and keep alive the importance of disability politics and activism alongside legal strategies. Yet without legal strategies, the law would not simply evaporate, but instead would continue to operate on and reinforce the norms and understandings that permit and legitimate oppression, isolation, exclusion and inequality. The CRPD is fundamental to unpicking them.

Similar text can be found in the Preamble to the European Convention on Human Rights (Council of Europe, 1950).

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International human rights instruments - United Nations declarations and resolutions (non-binding)

• ‘Universal Declaration of Human Rights’, adopted 10 December 1948, United Nations General Assembly Resolution 217 A(III) (UDHR).
• ‘Draft International Covenant on Human Rights and measures of implementation; future work of the Commission on Human Rights’ adopted on 4 December 1950, United Nations General Assembly Resolution 420.
• ‘Declaration on the Rights of Mentally Retarded Persons’, adopted 20 December 1971, United Nations General Assembly Resolution 2856 (XXVI).
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• ‘The Protection of Persons with Mental Illness and the Improvement of Mental Health Care’, adopted 17 December 1991, United Nations General Assembly Resolution 46/119 (‘MI Principles’).

Binding international Conventions - Council of Europe

• ‘Convention for the Protection of Human Rights and Fundamental Freedoms’, adopted 4 November 1950, entered into force 3 September 1953, European Treaty Series No. 5 (ECHR).

Binding international Conventions - Organization of American States

• ‘Inter-American Convention on the Elimination of all forms of Discrimination against Persons with Disabilities’, opened for signature on 7 June 1999, AG/RES. 1608 (XXIX-O/99).

United Nations Conventions

• ‘International Covenant on Civil and Political Rights’, opened for signatures 6 December 1966, 999 United Nations Treaty Series 14668 (ICCPR)
• ‘International Covenant on Economic, Social and Cultural Rights’, opened for signatures 16 December 1966, 999 United Nations Treaty Series 2 (ICESCR)
• ‘Convention on the Elimination of All Forms of Discrimination against Women’, opened for signatures 18 December 1979, 1249 United Nations Treaty Series 13 (CEDAW)
• ‘Convention on the Rights of the Child’, opened for signatures 20 November 1989, 2171 United Nations Treaty Series 227 (CRC).
• ‘International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families’, opened for signatures 18 December 1990, 2220 United Nations Treaty Series 3.
• ‘Optional Protocol to the Convention against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment’, opened for signatures 18 December 2002, 2375 United Nations Treaty Series 237 (OPCAT)
• ‘Convention on the Rights of Persons with Disabilities’, opened for signatures 13 December 2006, 2515 United Nations Treaty Series 3 (CRPD).
• ‘Optional Protocol to the Convention on the Rights of Persons with Disabilities’, opened for signatures 13 December 2006, 2515 UNTS 3 (OPCRPD).

Committee on the Rights of Persons with Disabilities: general comments, statements and guidelines

• General comment No 1 (2014) Article 12: Equal recognition before the law. Adopted 19 May 2014. UN Doc CRPD/C/GC/1.
• Guidelines on Article 14 of the Convention on the Rights of Persons with Disabilities. Adopted during the Committee’s 14th session, held in September 2015.
• Achieving gender balance and equitable geographical representation in the elections of members of the Committee. Statement of the Committee on the Rights of Persons with Disabilities. Adopted during the Committee’s 17th session, held 20 March–12 April 2017.
• General comment No. 7 (2018) on the participation of persons with disabilities, including children with disabilities, through their representative organisations, in the implementation and monitoring of the Convention. Adopted on 9 November 2018. UN Doc CRPD/C/GC/7.
• Statement by the Committee on the Rights of Persons with Disabilities calling States parties to oppose the draft Additional Protocol to the Oviedo Convention. Adopted during the Committee’s 20th session, held 27 August–21 September 2018 in Geneva, Switzerland.
• HK Danmark v. Dansk almennyttigt Boligselskab EUECJ C-335/11 (11 April 2013)
• Karsten Kaltoft v. Municipality of Billund EUECJ C-354/13 (18 December 2014)

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Despite the ADA, equity is still out of reach

Psychologists are intensifying efforts to improve health care, justice, employment and more for people with disabilities

Vol. 51, No. 8 Print version: page 38

• Implicit Bias
• Equity, Diversity, and Inclusion
• Disabilities
• Health Equity
• Socioeconomic Status

Signed into law 30 years ago, the Americans With Disabilities Act (ADA) has significantly improved the lives of the 1 in 4 Americans with disabilities. This civil rights law is designed to ensure that people with disabilities have the same rights and opportunities as everyone else by prohibiting discrimination in employment, education, transportation and other aspects of public life.

But true equality remains elusive, especially for people of color with disabilities and for those whose socioeconomic position makes access to health care and other services more challenging. People with disabilities face systems that were not designed to accommodate all people, ranging from the health-care system to the criminal justice system to employment and education.

And the likelihood of having a disability is not evenly distributed. For example, 2 in 5 non-Hispanic American Indians and Alaska Natives have a disability, according to the Centers for Disease Control and Prevention (CDC) , well exceeding the rate in the general population.

Recognizing the many barriers faced by people with disabilities, psychologists are pushing for research-based solutions to make health care more accessible, the criminal justice system more equitable and the ability to receive social and career supports easier.

“Disparities are not fair or necessary, and solutions are within reach,” says Susan Havercamp, PhD, a clinical psychologist and director of the Health Promotion and Healthcare Parity Program at the Nisonger Center for Excellence in Developmental Disabilities at The Ohio State University (OSU).

Barriers to health

People with disabilities have high rates of co-occurring health conditions and often have more health-care needs than people without disabilities, Havercamp says, but they face barriers getting the care they need.

A study of Ohioans with developmental disabilities co-authored by Havercamp and Jessica Prokup, MD (then a medical student), illustrates the problem. It found disparities among all age groups, particularly in delayed care and difficulties getting enough time with physicians ( Annals of Family Medicine , Vol. 15, No. 5, 2017 ). People with developmental disabilities were less likely to report having a physician who explained things well, particularly in the 65-plus age group, in which only 83% of respondents with disabilities said they were satisfied with their doctors’ explanations. (By comparison, 95% of adults over age 65 without developmental disabilities said their doctors explained things well.)

Unconscious bias by health professionals likely plays a role in the ways people with disabilities are treated. A literature review on implicit attitudes toward people with disabilities found moderate to strong negative implicit attitudes toward people with both physical and intellectual disabilities ( Wilson, M.C., & Scior, K., Research in Developmental Disabilities , Vol. 35, No. 2, 2014 ). These findings included the implicit attitudes of health-care professionals.

Such misperceptions are likely due to the limited training medical residents receive about disabilities, Havercamp says. “They assume people with disabilities are really different from anyone else.”

To address this problem, psychologists are working to improve training for health-care providers. Among their most far-reaching efforts is their work as part of the Alliance for Disability in Health Care Education, a nonprofit dedicated to integrating disability content into health-care training. The alliance has developed a set of core competencies to guide health-care programs in establishing this content ( Core Competencies on Disability for Health Care Education, 2019 ). About 27 health, education and disability organizations have endorsed the competencies, says Havercamp, an active contributor to the group. As of January 2020, nine had adopted at least some of the disability competencies, and 15 had disseminated them to their members or to the public.

Individual schools are also increasing their commitment to people with disabilities. At OSU, for example, medical students now get education on disabilities every year, thanks to a program developed in part by Havercamp and funded by the WITH Foundation, the CDC and the Health Resources and Services Administration. In addition to lectures, the four-year program includes simulated patient encounters with individuals with disabilities as well as panels whose members discuss daily life and health care with a disability. In the third and fourth years, students can choose community service placements at organizations serving people with disabilities and take an advanced competency curriculum on developmental disabilities.

“The students love it,” Havercamp says. “They will share how they never knew this information and how it has affected the way they think.”

Other psychologists are working to increase preventive care for people with disabilities. A perennial problem for patients with disabilities is that disability-related medical issues take center stage when they do see a doctor, leaving little time for attention to general preventive care and more universal issues such as reproductive health care. For example, a study led by CDC researcher Jacqueline Miller, MD, FACS, found that women with disabilities were less likely than those without to have gotten a mammogram in the previous two years ( Journal of Women’s Health , Vol. 20, No. 9, 2011 ). The disparity could not be explained by financial barriers alone, suggesting that issues such as transportation and positioning for people with mobility limitations might play a role.

“The other part of it is that if I have a disability and I live with something that is really bothering me, it’s not going to be my priority to get a mammogram, either,” says Gloria Krahn, PhD, MPH, a psychologist at Oregon State University who studies ways to improve health services for people with disabilities. “It takes so much effort to get to one medical appointment that you have to parse out your energy and resources.”

Prenatal and postpartum care can also fall into the access gap for people with disabilities, says Kara Ayers, PhD, a psychologist at the University of Cincinnati Center for Excellence in Developmental Disabilities at Cincinnati Children’s Hospital Medical Center and co-founder of a peer-support and research network studying the experiences of parents with disabilities. Not only may women with disabilities need specialty care that is only available in a few areas, they may face barriers to supports like lactation consulting. Lactation consultants may not have experience working with mothers who have upper-body-strength or mobility issues, for example. Worse, Ayers says, parents with disabilities are at risk of being reported to child protective services (CPS) without just cause. In one 2010 case in Missouri, a nurse reported a breastfeeding mother who was blind after her baby struggled to breathe during a breastfeeding session. The mother told ABC News that she had noticed the problem and asked a nurse for help. Soon after, the newborn was removed from the parents for two months during the investigation.

More education of the public and professionals to reduce bias against people with disabilities could prevent these traumatic situations, Ayers says.

Justice and disability

When parents with disabilities are called before CPS, they often find that the process of investigation isn’t accessible, Ayers says. CPS often opens investigations soon after birth, while mother and baby are still in the hospital, based on the presumption that a disabled person won’t be able to parent safely, she says. The parent may be asked to demonstrate that they can lift and change the baby using a standard hospital bassinet, which is not designed for people with physical disabilities, ignoring adaptations that parents may have prepared in their home nursery. The process may require reading or answering hypothetical, abstract questions, which can be unfair to people with intellectual disabilities.

This sort of inaccessibility permeates the justice system, as do structural barriers to justice for people with disabilities, who are vastly overrepresented among incarcerated populations. According to a Bureau of Justice Statistics report, 32% of prisoners and 40% of jail inmates reported at least one disability, which is three to four times the rate in the general population ( Bronson, J., et al., 2015 ). Two in 10 prisoners and 3 in 10 jail inmates reported having a cognitive disability.

In many cases, these impairments are mild, and defendants are reluctant to admit to them, says Marc J. Tassé, PhD, a psychologist and director of OSU’s Nisonger Center for Excellence in Developmental Disabilities. Defendants often work to mask their impairments out of a desire to be seen as neurotypical and competent, he says. While intellectual disability can be a mitigating factor in sentencing, without a comprehensive psychological evaluation, a judge may not realize the depth of a defendant’s disability.

Meanwhile, incarcerated individuals with intellectual disabilities are at high risk of victimization within jails and prisons, according to the California Policy Research Center . They are also at risk of serving lengthened sentences because of infractions made while incarcerated—infractions against rules they may not comprehend.

Disability intersects with race and socioeconomic status in criminal cases as well.

“A lot of the folks I see never received a comprehensive evaluation at any point in their lives, and we’re kind of scrambling now that they’re in trouble to say, ‘No, actually if you look back at the records, they were showing developmental problems from an early age,’” says Joette James, PhD, a clinical neuropsychologist who consults on criminal forensic cases. Some people facing the death penalty have records replete with evidence of undiagnosed developmental disabilities, as well as of abuse, trauma, discrimination and poverty, James says.

Even defendants who do have diagnoses have often been misdiagnosed, says Elliot Atkins, EdD, a forensic and consulting psychologist in New Jersey. Many defendants on the autism spectrum have been labeled with attention-deficit hyperactivity disorder, a misclassification that can change both the outcome of a criminal trial and the type of mental health treatment the person receives. Correcting those diagnoses is an important part of forensic psychologists’ work.

The symptoms of some developmental disabilities can make some defendants look less sympathetic to law enforcement officers, judges and juries. A person with autism may not show empathy or remorse after committing a violent act in the same way a neurotypical person would; a person with a low IQ might behave in unexpected ways at a crime scene.

Contextualizing the actions of defendants with developmental disabilities is one important role for forensic psychologists. Another is explaining defendants to their own lawyers. Understanding a client’s cognitive ability can help lawyers work more productively with him or her, Atkins says. Psychologists can also help lawyers get their clients into a mental health court, if appropriate. These courts aim to treat clients with cognitive disabilities or mental health diagnoses rather than simply incarcerating them.

Advocating for defendants with disabilities can also draw attention to the need for reform in the criminal justice system, James says. When she describes the trauma her clients have experienced, laypeople are often shocked. Many of her clients have suffered extreme poverty and familial instability. Most have had limited access to quality education and mental health care, yet these factors are often not considered when her clients are charged with a crime. “The criminal justice system is so broken,” James says.

During and after incarceration, people with disabilities find themselves in a system that neglects their needs, with many county jails failing to provide simple accommodations for inmates with physical disabilities, according to a report by Amplifying Voices of Inmates With Disabilities, an affiliate of the advocacy group Disability Rights Washington . In Washington state, for example, the group found that inmate showers were a step higher than the surrounding floor, outdoor recreation areas were inaccessible due to steep staircases, and deaf inmates were unable to communicate within the jail or with those outside the jail due to inadequate technology. Therapy, religious services and classes inside jails are also frequently inaccessible to those with disabilities.

Supporting employment

Though the ADA forbids discrimination in employment on the basis of disability, people with disabilities are less likely to be employed than people without disabilities. In 2019, for example, the unemployment rate for people without disabilities was 3.5%. For people with disabilities, it was 7.3%, according to the Office of Disability Employment Policy.

The disparities begin within the education system, which is not set up for equity or diverse learning styles, says Ivory Toldson, PhD, a professor of counseling psychology at Howard University. The impacts are worsened by the effects of systemic racism. According to a 2020 Government Accountability Office (GAO) report, 40% of allotted special education service time was either undelivered or went unrecorded. Meanwhile, the GAO has also found that students with disabilities are disproportionately disciplined. Although students with disabilities make up 11.7% of the school population, they make up 25% of students suspended out of school, 23% of those expelled from school and 27% of those arrested at school ( GAO, 2018 ). The situation was most dire for Black students with disabilities, who make up about 19% of students with disabilities but 36% of students with disabilities who are suspended from school.

Psychologists have a role in pushing back and reducing stigma around disability in the school system, Toldson says.

“Psychologists have to be social justice advocates as well as being professionals,” he says. “I’ll make the audacious statement that if you’re a psychologist in the traditional school setting and you have no complaints or critiques about the way the system is functioning, you’re not being a good psychologist.”

Other psychologists are working to address the transition from school to adulthood, when school-based accommodations and individualized educational plans melt away. “It’s almost as if society thinks [students with disabilities] can magically be independent now that they are adults,” says Connie Sung, PhD, an associate professor of rehabilitation counseling at Michigan State University (MSU).

To address that gap, in 2016, Sung and her colleagues launched Spartan Project SEARCH at MSU, part of an international program that helps transition-aged youth with developmental disabilities overcome employment obstacles. MSU is the first large public university to be a host site. Each year, eight to 10 young adults with disabilities come to MSU for a vocational training program to learn job- and work-related social skills and work on campus for nine months. They learn to take public transportation independently and navigate in the community safely with strangers (Price, R., Behavior Analysis in Practice , Vol. 11, No. 1, 2017 ).

“So far, over 80% of the graduates have stayed at MSU and become employees, which is a tremendously high employment rate compared to the usual rate for people with developmental disabilities,” Sung says.

Sung and her team are also experimenting with virtual reality technologies to help individuals with autism spectrum disorder gain skills. Participants undergo simulated interactions with an avatar to learn and practice. So far, the researchers have found that participants enjoy using the technology to learn new skills and report few negative effects such as visual disturbance or anxiety ( Annual Review of Cybertherapy and Telemedicine , Vol. 14, 2016 ).

Such technology offers a huge opportunity for overcoming many of the access and transportation issues that individuals with disabilities face, says Leonard Abbeduto, PhD, the director of the University of California, Davis’s MIND Institute. Abbeduto and his team have developed a language intervention for children with fragile X syndrome delivered entirely through videoconferencing ( Developmental Neurorehabilitation , Vol. 21, No. 1, 2018 ).

“The sorts of things we could think about would be doing job coaching at a distance for adults in the workplace, or doing check-ins with people at home to give advice about independent living, or we could use virtual reality to train people at a distance,” Abbeduto says. “Technology holds so much potential for reaching more people than we can do in one-on-one or group therapies. We need to think creatively.”

Meanwhile, a growing number of universities are offering programs for young adults with developmental disabilities. At the University of North Carolina, for example, the TEACCH School Transition to Employment and Postsecondary Education program helps students with autism with a high school degree transition to jobs or postsecondary education with skills instruction delivered at community colleges throughout the state. At the University of Iowa, students with intellectual, cognitive or learning disabilities can receive support through the Realizing Educational and Career Hopes program, which offers vocational counseling as well as support for inclusion in campus life. However, there is an urgent need for more capacity, say advocates in the field. According to the Bureau of Labor Statistics , only 19.3% of people with disabilities were employed in 2019, compared with 66.3% of people without disabilities.

For Sung and her colleagues, the next step is a grant-funded expansion of their program to use virtual reality to train workers with disabilities on how to address nuanced social situations beyond interacting with co-workers, such as dealing with customers. Every success in training shows hiring managers and other employees that people with disabilities are capable, Sung says. She cites a case of a young man with autism in the program who was very quiet. The staffers he worked with assumed he couldn’t understand the work instructions because he preferred not to engage. In fact, he was incredibly efficient at the work and finished tasks in half the time of other employees. The department ended up creating a position for the young man after his time in Spartan Project SEARCH ended.

“He still works there,” Sung says. “He changed this department’s perception of people with disabilities.” 

Further reading

Building Skills, Confidence, and Wellness: Psychosocial Effects of Soft Skills Training for Young Adults With Autism Connor, A., et al., Journal of Autism and Developmental Disorders , 2020

Cross-Disability Experiences of Barriers to Health-Care Access: Consumer Perspectives Drainoni, M.L., et al. Journal of Disability Policy Studies , 2006

National Health Surveillance of Adults With Disabilities, Adults With Intellectual and Developmental Disabilities, and Adults With No Disabilities Havercamp, S.M., & Scott, H.M., Disability and Health Journal , 2015

Recommended Reading

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Reviewing the Disability Employment Research on People who are Blind or Visually Impaired: Key Takeaways

As part of AFB’s commitment to changing the way employers see job seekers and employees who are blind or have low vision, AFB's Public Policy and Research Center conducted a literature review on employment and workers with disabilities.

The following key takeaways provide insights into the larger picture of employment in the U.S. for people who are blind or visually impaired and the current barriers to upward mobility, as well as the factors that lead to success. Finally, we review the areas that merit further study.

A Quick Overview of Employment Statistics for People Who Are Blind or Visually Impaired

According to the American Community Survey (ACS), the majority of working-age people who are blind or visually impaired are out of the labor force. i

• Over half of working-age people who are blind or visually impaired are not in the labor market, meaning they are not working and not seeking work, compared with fewer than a quarter of people without disabilities.
• Only 44 percent of people who are blind or visually impaired are employed, compared with 79 percent of those without disabilities.

The high percentage of people not participating in the labor force may represent people who feel they cannot work because of their disability, who choose not to work for fear of losing benefits, or who are discouraged workers who have given up on finding a job. ii

• Workers who are blind or visually impaired were more likely to be employed part-time or for only part of the year than those with no disability.
• Among workers who are blind or visually impaired, 32 percent worked either part time or only part of the year in 2016, compared with 25 percent of those without a disability. iii

This disparity is attributed to two factors; some of these workers may choose to work part-time to retain their SSI or SSDI benefits and others wish to work full-time but have difficulty finding full-time work.

Tracking the Statistics Over the Past 10 Years

The percentage of people with disabilities who are working, including those who are blind, has fluctuated over the past nine years since the ACS began including a question that allows researchers to consistently identify the blind or visually impaired population. The employment rate of people with vision loss dropped from 43 percent in 2008 to a low of 37 percent during the recession, then recovered and steadily rose to about 44 percent in 2017. This is higher than the rate of the broader disability population at 37 percent but still 35 percentage points lower than the employment rate of those with no disability.

Table: Employment Rates of the Working-age Population (18-64) 2008-2017 by Disability Status

Source: ACS as reported by Cornell University, Yang-Tan Institute on Employment and Disability.

People with visual impairments and other disabilities have historically fared poorly in both educational attainment and labor market participation relative to people without disabilities. Using the definition, “blind or have difficulty seeing, even when wearing glasses,” 15 percent of people with vision loss had a college degree or higher compared with 30 percent of people with no disability. iv Because employment is positively correlated with higher education levels, we would expect that those with higher levels of education would be more likely to have jobs. While people who are blind or visually impaired who also have a bachelor’s degree or higher are more likely to be employed than those with less than a high school education (65 percent compared with 24 percent), they are less likely to be employed than people with no disability who have a bachelor’s degree or higher (84 percent). Regardless of educational attainment, there is a significant employment gap between those with a visual impairment or blindness and those with no disability (Table below).

Table: Percentage Employed by Educational Attainment and Disability Status, Age 18-64

Source: Author’s Analysis of the 2017 ACS Public Use Microdata.

Wages and Occupational Industries

Compared with people without disabilities, the earnings of people with disabilities who work are lower than those without disabilities. (This is also true of people who are blind or visually impaired, although the earnings of these workers are a bit higher than workers with other disabilities.) In large part this is because the population of people with disabilities as a whole tends to be older, have higher numbers of minorities, and have lower levels of education. Even so, we would expect that full-time workers with disabilities who have the same amount of education as their non-disabled peers would have, on average, equal earnings, v but the disparity in earnings between the two groups is over $17,000.

Advances in technology should have greatly expanded opportunities for individuals with blindness or visual impairments and offer them greater parity with their non-disabled peers in the workplace. vi However, the earnings disparities persist even when comparing those with equal levels of education. Among individuals with any education level, the wage variance between people who are blind or visually impaired and who have no disability is over $13,000. Notably, the variance between wages of people with visual impairments and no disability with a bachelor’s degree or higher is $14,727; this is the largest earnings difference among workers in all educational levels (Table below).

Average (Mean) Wage of Working-age Population by Educational Attainment and Disability Status

For more detailed statistical data, please review our regularly updated Key Employment Statistics for People Who Are Blind or Visually Impaired .

Barriers to Upward Mobility for Workers Who Are Blind or Visually Impaired

Literature on upward mobility for employees identifies education, networking, mentorship, personal competencies, work commitment, autonomy, and the ability to successfully navigate career-related challenges as factors that enable them to advance in their careers. vii Two of these factors may create special barriers to job promotion and upward mobility for people with blindness or low vision.

First, social and interpersonal communication challenges can impede access to employment and may create a barrier to advancement for blind or visually impaired employees. The inability to communicate nonverbally with others can be perceived as a social failure and, as a result, blind or visually impaired employees may not fit into the workplace culture. Socializing with sighted peers is important for job retention and being perceived as an effective employee. viii

Second, employees who have a college level education are more likely to be employed in positions that foster the autonomy linked with job satisfaction and upward mobility. However, employees with blindness or low vision are less likely to have a higher education and among those who do, employees with disabilities, including those with blindness or low vision, tend to be working in lower level jobs that don’t match their skill level. ix

Employer attitudes also may create barriers to upward mobility for blind or visually impaired employees that others may not experience. According to the NIB survey of hiring managers, almost half of those surveyed said there were few jobs within their company that blind or low vision workers could do, and many said that such workers would be best suited for customer service work. x Blind or visually impaired workers tend to be hired for a specific job and managers may not see them as potential candidates for promotion.

Lack of Transportation

People who are blind or visually impaired and state vocational rehabilitation (VR) counselors often cite transportation as an employment barrier. A survey of people with blindness or low vision revealed that 38 percent had turned down a job because of transportation concerns. Among respondents who were not employed, 29 percent believed transportation was the reason they were not working, although many respondents also cited other factors such as loss of disability benefits, poor health, multiple disabilities, or difficulty with travel skills. xi Controlling for age and vision, youth with high ratings on community travel skills were significantly more likely to be employed up to six years after high school. xii

VR counselors or orientation and mobility specialists sometimes discuss transportation to work with blind or visually impaired clients, including the use of public transit and completing applications for paratransit services, but they do not typically focus on identifying and negotiating employment-related transportation. In the survey, only one-quarter of VR users reported receiving assistance from rehabilitation agencies in locating transportation to and from work. xiii

These data confirm that survey respondents do experience transportation issues that affect their employment, but the magnitude of the impact of transportation on employment remains unclear. However, VR agencies could help job seekers with blindness or vision loss in their efforts to locate employment-related transportation as well as transportation for other life activities. They could provide clients with information about transit systems and other transportation services, evaluate their ability to engage in tasks associated with finding and accessing transportation, and engage them in problem-solving discussions to generate transportation options. xiv

Accessibility of Online Applications

Most candidates must fill out an online application. Research shows that many online employment websites are inaccessible to users with blindness or low vision, preventing these individuals from even applying for jobs online. In one study, 16 blind screen-reader users attempted to apply for jobs online and found that only one-quarter of applications could be completed without any sighted assistance. xv

Indicators of Successful Work Experiences

People who accept their visual impairment and build on their strengths and abilities are more likely to get a job and keep it, according to one study. Those who were open to discussions with employers about their visual impairment and accommodation needs were more likely to be successful. xvi

Employers report that employees being comfortable with their disability, being an ambassador for blindness by eliminating awkwardness in relationships, and insisting on being held to the same standards as coworkers are important factors in a successful employment relationship. xvii

Facilitators to Finding and Keeping Employment

The probability of having a job and higher wages for workers increases with the level of education. For example, people with a postsecondary degree were twice as likely to be employed as those without a degree and their wages were over twice as high.14 xviii This positive relationship between education, employment rate, and wages is also present in the general population.

Family and Peer support

Families, advisors and peers play a key role in sustaining effective employment and independent living outcomes. Parents can provide emotional support, serve as advocates, and encourage independence. More directly related to employment, many job seekers, especially youth, use friend and family networks to find jobs. Blind or visually impaired youth whose parents had higher expectations regarding their participation in activities of daily living while they were growing up were more likely to be employed. xix

However, family support is not universal. Many individuals who are blind tell of families who were over-protective, of communities that restricted their activities, and of support groups that promoted unemployment and dependence on public benefits. Future research should tease out how families and communities can have higher expectations of blind children to facilitate independence and promote greater growth and evolution. xx

Early Work Experience

Early work experience is an important correlate of employment for youth with blindness or low vision. Youth who are blind or low vision who had at least two work experiences while in high school are almost twice as likely to be employed as adults as those with no work experiences. xxi Several other studies have found that the number of jobs held and recent work experience for youth in transition to adulthood are positively associated with their work participation. Work experience acquired during adolescence, whether mowing the lawn, shoveling snow or babysitting, allows students to prepare for more demanding jobs. Even volunteer work helps them graduate to a paid job. It may be that early work experience helps the youth develop a stronger network of people who can assist them with finding a job later or that those who are motivated to pursue early work experiences are also motivated to find employment as adults. xxii

Access to Assistive Technology and AT training

The ability to use information and communication technology increases the likelihood of having a job. One study of youth who participated in a VR program found that 91 percent of participants who used technological aids held a job after graduating from the program. Only 25 percent of graduates who did not use them found jobs. xxiii

A study of transition age youth found those with a high self-perceived level of computer competence were significantly more likely to have paid jobs than those with low self-perceived computer competence when gender, severity of vision loss, and multiple disability status were held constant. Although the study did not examine how youth used their computer skills, the authors theorize that, apart from the fact that most jobs now require computer skills, information and communication technologies can also help overcome some of the barriers to work participation. They can, for example, allow users to organize transportation and travel, read printed material, obtain information about job opportunities, and fill out job application forms. xxiv

Access to Mentoring

Evidence suggests that career-mentoring programs may assist students with blindness or low vision to overcome existing barriers to employment. One study found that guidance from mentors helped mentees to gain the confidence or skills needed to ask about job opportunities on their own and to become more self-sufficient in finding a job rather than relying solely on VR counselors. xxv

Access to Vocational Rehabilitation (VR) Services

VR agencies provide or fund blindness skills training from vision rehabilitation therapists, orientation and mobility instructors, assistive technology specialists, and others. VR provides employment-related training, job-related technology and tools, placement services, and, if needed, postemployment services. Children and adolescents who are blind or visually impaired need specialized training to help them develop the skills necessary to work and to function independently. Early intervention and comprehensive blindness skills training with adults is also critical to their employment.

The Power of Networking

Research suggests that developing long-term relationships with business helps consumers with blindness or low vision obtain employment. In recent years, rehabilitation agencies have expanded their mission to engage employers and develop long-term relationships with them. This “dual customer approach,” or the “business relations model,” gives counselors the opportunity to educate employers about the blind and visually impaired population. xxvi State VR agencies are increasing their efforts to work with employers, but officials said they could use more guidance from the Rehabilitation Services Administration on how to track and measure the effectiveness of this approach. xxvii

A survey of 382 employers found that employers with contact and ongoing relationships with VR agency staff that had communicated specifically about the population were more likely to have a positive attitude toward blind or visually impaired workers and to hire someone with blindness or low vision. Employers said they were most likely to hire someone who is blind or visually impaired because they were qualified for the position or were the best candidate, whether they had contact with a VR agency or not. Those who had ongoing contact talking about people who are blind or visually impaired had the most positive attitudes about this population.

However, more than one-fifth of those with a VR contact said they were likely to hire because of empathy or compassion for the blind or visually impaired jobseeker while none of the employers without VR contact gave this as their reason. Some also said they wanted to provide equal opportunity and did not discriminate in hiring based on disability. xxviii But the fact that almost 20 percent gave empathy or compassion as a reason for hiring is troubling. If employers hire people with disabilities for this reason, their expectation may be that the person with a disability cannot truly provide value to that employer, other than to show that the employer is charitable.

Areas Needing Further Study

Characteristics of employers that hire blind or visually impaired workers.

Research is limited regarding the characteristics of employers who hire jobseekers with blindness or low vision. Based on a survey of almost 200 employees in hiring positions, McDonnall and her associates found that whether the employer had communicated with a VR agency, whether they had previously hired a blind or visually impaired person, and their awareness of how a person with blindness or low vision can perform certain tasks such as accessing printed material, using the internet or using standard industrial equipment, predicted more positive attitudes about blind or visually impaired workers, although over two-thirds did not know how a blind person would accomplish these tasks. The size of the company, being in a human resources position, and the hiring manager having a personal relationship with someone with blindness or low vision did not affect hiring. xxix While we were unable to identify employers’ best practices in hiring blind or visually impaired workers, researchers have identified effective practices in hiring and retaining workers with disabilities. Case studies on the effects of corporate culture on the employment experiences of people with disabilities found strong evidence that managers play a major role in disability inclusion, the perceived organizational climate is critical, and visible organizational commitment to disability recruitment issues is essential. xxx

i U.S. Census Bureau, 2017 American Community Survey 1-Year Estimates, Table B18120: Employment Status by Disability Status and Type

ii American Foundation for the Blind, (2018). Research Navigator: Putting Data to Work-Reinforcing Labor Force Statistics. Retrieved from https://www.afb.org/research-and-initiatives/statistics/key-employment-statistics

iii Erickson, W., Lee, C., & Von Schrader, S., (2017). Disability Statistics from the American Community Survey (ACS). Cornell University Yang-Tan Institute (YTI). Retrieved from http://www.disabilitystatistics.org

iv U.S. Census Bureau, 2017 American Community Survey 1-Year Estimates, Author’s Analysis

v Yin, M., Shaewitz, D., & Megra, M., (2014). An Unequal Playing Field: The Lack of Equal Pay for People with Disabilities. American Institutes for Research. Retrieved from https://www.air.org/sites/default/files/Lack%20of%20Equal%20Pay%20for%20People%20with%20Disabilities_Dec%2014.pdf .

vi Victor, C., Thacker, L., Gary, K., Pawluk, D. & Copolillo, A., (2017). Workplace Discrimination and Visual Impairment: A Comparison of Equal Employment Opportunity Commission Charges and Resolutions Under the Americans with Disabilities Act and Americans with Disabilities Amendments Act. Journal of Visual Impairment & Blindness : 475-482.

vii Kulkarni, M., (2016). Social Networks and Career Advancement for People with Disabilities. Dissertation. Retrieved from http://uir.unisa.ac.za/bitstream/handle/10500/22159/dissertation_ximba_tm.pdf?sequence=1&isAllowed=y .

viii Naraine, M., & Lindsay, P., (2011). Social inclusion of employees who are blind or low vision. Disability & Society , 26:4, 389-403.

ix Sundar, V., & Brucker, D., (2018). Personal and Organizational Determinants of Job Satisfaction for Workers With Disabilities. Rehabilitation Counseling Bulletin. (0):1-10.

x National Industries for the Blind (2018). HIRING MANAGERS SURVEY. https://www.nib.org/sites/default/files/data_statistics/2018_NIB_Hiring_Survey_WEB.pdf

xi Crudden, A., Capella-McDonnall, M, & Hierholzer, A., (2015). Transportation: An Electronic Survey of Persons Who are Blind or Have Low Vision. Journal of Visual Impairment & Blindness . 109(6):445-456.

xii Cmar, L., (2015). Orientation and Mobility Skills and Outcome Expectations as Predictors of Employment for Young Adults with Visual Impairments. Retrieved from https://files.eric.ed.gov/fulltext/EJ1114561.pdf .

xiii Crudden, A., Capella-McDonnall, M, & Hierholzer, A., (2015).

xv Lazar, J., Olalere, A., and Wentz, B., (2012). Investigating the Accessibility and Usability of Job Application Web Sites for Blind Users. Journal of Usability Studies . 7(2):68-87. Retrieved from https://uxpa.org/jus/article/investigating-accessibility-and-usability-job-application-web-sites-blind-users .

xvi Duquette, J., & Baril, F., (2013). Factors Influencing Work Participation for People with Visual Impairment l’Institut Nazareth et Louis-Braille. Retrieved from http://www.inlb.qc.ca/wp-content/uploads/2015/01/Factors-influencing-work-participation-in-persons-with-VI.pdf .

xvii Golub, D., (2006). A Model of Successful Work Experience for Employees Who Are Visually Impaired: The Results of a Study. Journal of Visual Impairment & Blindness , December:715-725.

xviii Bell, E., & Mino, N., (2013). Blind and Visually Impaired Adult Rehabilitation and Employment Survey: Final Results. Journal of Blindness Innovation and Research . 3(1). Retrieved from https://nfb.org/images/nfb/publications/jbir/jbir13/jbir030101.html .

xix Shaw, A., Gold, D. and Wolffe, K., (2007). Employment-related Experience of Youths Who are Visually Impaired. How are These Youths Faring? Journal of Visual Impairment & Blindness . January 7-21.

xx Bell, E., & Mino, N., (2015). Employment Outcomes for Blind and Visually Impaired Adults. Journal of Blindness Innovation and Research. 5(2). https://nfb.org/images/nfb/publications/jbir/jbir15/jbir050202.html .

xxi McDonnall, M.C., (2011). Predictors of Employment for Youths with Visual Impairments: Findings from the Second National Longitudinal Transition Study. Journal of Visual Impairment & Blindness . August. 453-466.

xxii Duquette, J., & Baril, F., (2013).

xxiii Capella-McDonnall, M., & Crudden, A., (2009). Factors Affecting the Successful Employment of Transition-age Youths with Visual Impairments. Journal of Visual Impairment & Blindness . June:329-341.

xxiv Zhou, L., Smith, D.W., Parker, A., & Griffin-Shirely., N., (2013). The Relationship Between Perceived Computer Competence and the Employment Outcomes of Transition-aged Youths with Visual Impairments. Journal of Visual Impairment & Blindness . January-February: 43-53.

xxv O'Mally, J., & Steverson, A., (2017). Reflections on Developing an Employment Mentoring Program for College Students Who Are Blind. Journal of Visual Impairment & Blindness. 111(3):271-276.

xxvi McDonnall, M., (2017). The Relationship Between Employer Contact with VR and Hiring Decisions About Individuals who are Blind or Visually Impaired. Journal of VR. 83(1): 50-58.

xxvii U.S. Government Accountability Office, (2018). Vocational Rehabilitation: Additional Federal Information Could Help States Serve Employers and Find Jobs for People with Disabilities.18-577. Retrieved from https://www.gao.gov/assets/700/694369.pdf .

xxviii Ibid.

xxix McDonnall, M., & Crudden, A., (2018). Predictors of employer attitudes towards blind employees, revisited. Journal of VR. 42(2):221-231. Retrieved from http://dx.doi.org/10.3233/JVR-180933 .

xxx U.S. Department of Labor, (2008). Disability Case Study Research Consortium. Conducting and Benchmarking Inclusive Employment Policies, Practices and Culture. Retrieved from https://www.dol.gov/odep/research/CorporateCultureFinalReport.pdf .

Content Search

Somalia + 1 more

Case studies repository: How to make humanitarian action more inclusive with and for persons with disabilities - Experiences from Somalia, Somaliland and Syrian crises responses (June 2024)

Attachments.

Case study 1: Localization of inclusive humanitarian action through capacity development of national humanitarian actor

The practice was collected as part of the ‘From Guidelines to Action (FG2A)’ project “supporting the operationalization and localization of IASC Guidelines on inclusion of persons with disabilities in humanitarian action” funded by ECHO and CDP. This practice was collected from TAAKULO.1 This organization attended the review, adapt, action and learning (RAAL Lab) session on disability inclusive humanitarian action in May 2023 with six staff. Their staff were from the programme development, management, and MEAL departments. The RAAL Lab is a capacity strengthening initiative and was used in combination with the adapted version of the DRG Learning modules , which were designed to operationalize the IASC guidelines on disability inclusion . During the RAAL Lab workshop the participant applied IASC guidelines to their project cycle management. As part of the technical follow up process Humanity & Inclusion (HI) team collected best practices to understand better how the organization was taking forward the learning from the RAAL Lab.

Related Content

Syria humanitarian response (january - june 2024), somalia humanitarian bulletin, august 2024, northwest syria - factsheet (as of 28 august 2024), somalia: cccm cluster monthly update - reporting period: july 2024.

• 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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We promote and protect the human and legal rights of people with disability and their supporters through legal advocacy. We do this by providing free legal advice and representing people with disability discrimination cases.

Through our work we proactively aim for recognition and respect of human and legal rights, remove barriers, eliminate discrimination, empower people with disability, and increase provision of access to justice.

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Investigations

Oregon hospitals didn't have shortages. so why were disabled people denied care.

Joseph Shapiro

Masks hang from an IV pole at a hospital. Jenny Kane/AP hide caption

Masks hang from an IV pole at a hospital.

At the start of the coronavirus pandemic, a small group of disability rights advocates found itself in a race against time to save the life of a woman with an intellectual disability.

The woman was taken to the hospital with COVID-19. But the hospital, in a small Oregon town, denied the ventilator she needed. Instead, a doctor, citing her "low quality of life," wanted her to sign a legal form to allow the hospital to deny her care.

Out of that quiet fight in early spring, the advocates — staff at a disability rights legal group, a state lawmaker and a few others — discovered something disturbing: There were many cases in Oregon of health care being rationed to people with disabilities.

At the same moment, across the United States, disability groups and even a civil rights office of the U.S. government were raising a similar warning: that behind closed doors, people with disabilities, as well as elderly people, were in danger of being denied health care.

NPR was looking for cases, too, and heard about the woman in Pendleton while she was in the hospital.

There's no reason that these examples would occur more frequently in Oregon than in other states. But the fight for that anonymous woman with an intellectual disability peeled back the curtain on health care decision-making in Oregon in a way that did not happen in other states.

That activism led to change in Oregon — including anti-discrimination legislation and new statewide policies .

It was late March when the woman with an intellectual disability contracted COVID-19. She struggled to breathe.

As Hospitals Fear Being Overwhelmed By COVID-19, Do The Disabled Get The Same Access?

The Coronavirus Crisis

One man's covid-19 death raises the worst fears of many people with disabilities.

In the hospital, a medical provider wrote do-not-resuscitate (DNR) and do-not-intubate orders for the woman. Those are medical instructions to health care providers to withhold potentially painful interventions, like a ventilator or CPR, if a patient stops breathing or the patient's heart stops. The woman was alone in the hospital and did not understand what the doctor and medical staff wanted her to agree to.

In addition, the hospital staff sent word to the woman's group home: Fill out DNRs in advance for your other residents, in case one of them comes to the hospital.

People who worked with the woman were angry that the doctor and the hospital seemed to be discounting the lives of people with disabilities.

Someone tracked down lawyers for help.

The lawyers work for Disability Rights Oregon (DRO), a federally funded legal group that protects the rights of people with disabilities. State Sen. Sara Gelser, who chairs Oregon's Senate Committee on Human Services, was notified too.

NPR knows some details of the case in Pendleton based on interviews with state officials, lawyers and others in Oregon, as well as from documents obtained through a public records request.

Because of privacy laws, those we spoke to could talk only generally of the case and the person involved. They couldn't confirm the gender of the person. NPR knows the person was a woman because of references in the state documents we obtained. Officials at DRO said they cannot confirm the place where the case happened. State documents show it was in Pendleton, a town with one small, 25-bed hospital.

The report from Pendleton alarmed staff at DRO. "We investigated and substantiated it," Jake Cornett, executive director of DRO, told NPR. A person with an intellectual disability was "being inappropriately influenced about life-sustaining treatment. And the physician in that case talked about the quote 'low quality of life' of a person with a disability." Cornett made the same points, briefly, in testimony to the state legislature.

"It would be one thing if these were isolated incidents," says Jake Cornett of Disability Rights Oregon, but care was being denied to people across the state and that "should raise the alarm bell." Ramsey Cox hide caption

"It would be one thing if these were isolated incidents," says Jake Cornett of Disability Rights Oregon, but care was being denied to people across the state and that "should raise the alarm bell."

At the hospital, the intellectually disabled woman needed to be on a ventilator immediately.

Emily Cooper, the legal director at DRO, threatened to sue the hospital. The woman was moved to another hospital, where she was placed in the intensive care unit and on a ventilator.

Her condition was dire. There was fear, according to a letter that state Senator Gelser sent to the governor's office and state health officials, that the woman had been left "without appropriate and necessary care for two days" and that the time without a ventilator had put her life at risk.

The woman's advocates worried that she might die. But after several days in the new hospital, the woman recovered. She returned to her group home.

Still, even that success left Cooper worried.

"The threat of litigation and the threat of exposing the depth and the whiff of discrimination in our state, I think, was enough to get people to do the right thing," says Cooper. "But what that meant is you needed to have a lawyer call or you needed to have someone that had the gravitas to push for that."

Most people with disabilities and their families don't have lawyers working for them. And DRO and state officials were getting more reports from around the state of health care being denied.

Gelser urged the governor and state officials to make it clear that doctors could not write blanket DNRs for patients with disabilities.

"I remain deeply concerned about the situation in Pendleton," Gelser wrote on April 10 in an email to state officials. "We only know about it because someone knew to call for help. If that call had not happened and DRO had not engaged, it is not hard to imagine the person would have died."

Gelser, in the email obtained by NPR in its records request, urged state officials to sanction the hospital. "The providers, as far as I can tell, have been given no clear signal that what they did was wrong and should not occur again," she wrote. "A strong, pointed statement about the rights of elderly and disabled people is desperately needed at this time."

The Oregon Health Authority "received a complaint in April 2020 related to patients' rights," a spokesperson told NPR. But it concluded "that we would not be able to investigate." The main allegation was against the doctor, and the health authority does not have "jurisdiction over individual health care providers."

When Emily Cooper at Disability Rights Oregon learned of the disabled woman who needed a ventilator but couldn't get one, she threatened the hospital with a lawsuit. Kelly Robbins hide caption

When Emily Cooper at Disability Rights Oregon learned of the disabled woman who needed a ventilator but couldn't get one, she threatened the hospital with a lawsuit.

It was up to the organization that accredits the hospital, the health authority concluded.

NPR checked with the Joint Commission, the accrediting body. A spokesperson said it had not received a complaint. But as a result of NPR's inquiry, the spokesperson said, it had opened a review of the incident.

"Nothing happened to that hospital. Nothing happened to that physician," Gelser told NPR. "The health authority confirmed that, in fact, that was a coerced do-not-intubate order, that they confirmed it happened ... but there was no sanction. So there was no remedy."

Adds Gelser: "This is immoral. We do not respond to disability discrimination in the way that we should."

CHI St. Anthony is the one hospital in Pendleton. In a statement to NPR, the hospital said: "For reasons of patient confidentiality, we are not able to comment on any specific situation or patient. We are committed to providing compassionate and high quality care to every patient, without regard to anyone's ability or disability. St. Anthony Hospital categorically denies any allegations to the contrary. We are unaware of any complaint to the Oregon Health Authority such as you have described."

NPR reached out to the disabled woman who survived COVID-19. But the woman, traumatized and confused by her time in the hospital, does not speak about it.

Federal laws, notably the Americans with Disabilities Act and the Affordable Care Act, prohibit health care discrimination — including denial of care — based solely on a person's disability.

The Office for Civil Rights at the U.S. Department of Health and Human Services explained the law in guidance at the start of the pandemic. When care is scarce, doctors are allowed to decide who gets it and who doesn't. They can decide who is most likely to do best with that treatment by making an "individualized assessment of the patient" based on objective medical evidence.

But doctors can't rule out people because they have a specific disability — for example, dementia or using portable ventilators every day to help themselves breathe. "Persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person's relative 'worth' based on the presence or absence of disabilities or age," the civil rights office explained.

OCR issued those guidelines on March 28 after national and state disability groups raised alarm that states had issued rationing plans that allowed discrimination against elderly and disabled people. Oregon was one of 29 states that issued "crisis standards of care" guidelines to doctors and health care systems about how to allot scarce medical care in case of a crisis — like a terrorism event, a natural disaster or a pandemic. In early May, Disability Rights Oregon led a coalition of 21 state and national disability and civil rights groups and filed a complaint about Oregon's standards with OCR.

The near death in Pendleton spurred the advocates to watch for other cases. One state official, who handled complaints at residential facilities, wrote to Gelser in April that her office had received and investigated complaints of hospitals and physicians "inappropriately" asking people with disabilities to fill out a legal form to limit care, according to the documents obtained by NPR.

Gelser heard reports of disabled and elderly people who had symptoms of COVID-19, went to the hospital and were denied tests, treatment or even lifesaving care. "We had hospitals that were trying to immediately discharge people and saying that they needed to go home for palliative or comfort care, instead of actual treatment," she says.

There are additional cases in the public documents that NPR collected. In April, a health care system in Salem, Ore., sent an "urgent message" to area group homes for people with disabilities, telling them not to bring residents with symptoms of COVID-19 to the emergency room unless "they are so sick they require hospitalization," according to the letter.

That was alarming, Gelser says, because it "discouraged people from bringing in clients that needed care. It also indicated people would be discharged prematurely — and into group homes that didn't have the capacity to provide appropriate care."

A spokesperson for Salem Health said it had focused in early spring on being prepared to handle a large number of coronavirus cases. "During the unknowns of the spring surge, this meant preserving hospital capacity for those who truly required hospital-level care," the spokesperson said, adding that the system followed state and federal guidelines for best practices and has changed its policies as those standards have changed.

The state records that NPR obtained show other people with disabilities were denied coronavirus tests or treatment when they showed up at hospitals with symptoms.

Sarah Frazzini, the executive director of Benco, a nonprofit agency that provides housing and other services to people with disabilities, points to the story of one of her residents.

On April 2, the 64-year-old man was running a high fever, and staff at his group home worried that he'd contracted COVID-19. They took him to the emergency room at Good Samaritan Regional Medical Center in Corvallis.

The man has a significant intellectual disability. He doesn't speak words. He's quadriplegic. He can't swallow and is fed through a tube.

Medical staff in the emergency room refused to test him for the coronavirus. Frazzini told the story to NPR, as well as to state lawmakers in a June hearing. It would be a "waste of valuable PPE," or personal protective equipment, a member of the medical team said, angrily, in front of the man, according to Frazzini. At the time, there were shortages of PPE in Oregon and nationwide.

He was eventually tested after a staff worker for the agency that ran the man's group house insisted, Frazzini told NPR. The man was admitted to the hospital. It turned out he had pneumonia, not COVID-19.

When, after six days, he was discharged, Frazzini said in the hearing and to NPR, a physician in an online call made a recommendation: The group home should stop the man's care and nutrition and begin end-of-life hospice care. According to Frazzini, the doctor said the man, with his multiple disabilities, had a "low quality of life."

The staff member who worked for him was furious. The man was not dying. His condition was the same as before he'd entered the hospital. He'd lived this way for years. Frazzini says her staff felt the doctor had seen a man with significant disabilities and had made a judgment that his life didn't matter.

The man is in good health today. He lives in his group home and spends days in his favorite recliner, watching his favorite superhero movies and enjoying the brightly colored tropical fish in his large aquarium.

The man "lives a dignified and fulfilled life," Frazzini told lawmakers. "To have to fight so hard for the COVID test, to hear statements about giving the test being a 'waste of valuable PPE' and to have the physician recommend at discharge to end his life is absolutely appalling," she said at the hearing.

A spokesperson for Samaritan Health Services said that he could not comment on the care of a specific patient but that the hospital's policies have evolved since the spring based on changes in state recommendations.

In the documents obtained by NPR, there are other reports of people with intellectual disabilities being told to sign a do-not-resuscitate order as a condition before being admitted. At other hospitals, they were separated from their caregivers and pressured to sign a document they did not understand.

Or, as in Sarah McSweeney's case, her guardians felt pressured.

Before she went to the hospital, McSweeney loved it when staff at her group home took her to the shopping mall to get her hair done and to country music concerts. The 45-year-old woman had multiple disabilities. She was quadriplegic, so staff at her group home in Oregon City pushed her in her bright pink wheelchair. She couldn't swallow, so the direct service professionals — the caregivers at the group home — fed her through a gastrostomy tube that sent nutrition directly to her stomach. She couldn't speak words, but the people who worked for her could understand her by her sounds and facial expressions.

Sarah McSweeney had a big personality and loved going shopping with friends. But at the hospital, doctors questioned why she wanted full care. Joshua Peyton hide caption

Sarah McSweeney had a big personality and loved going shopping with friends. But at the hospital, doctors questioned why she wanted full care.

"And even though she had these medical issues, she was vivacious. She just lived her life," says Heidi Barnett, who worked with her. "She had a pretty full life. And you were blessed if you got to meet her."

NPR told McSweeney's story earlier this month.

Barnett works for the Arc Oregon in its guardianship program. She helped McSweeney make decisions about her life and health care. She helped McSweeney draft the legal document that went with her to the hospital: It said that she wanted full medical care.

But after McSweeney went to the hospital on April 21 with a high fever, doctors and social workers called Barnett — who wrote up detailed notes of these calls — and tried to get her to accept a do-not-resuscitate order for McSweeney.

Tests showed McSweeney did not have COVID-19. But in the hospital she had episodes of aspiration pneumonia, when fluid backed up into her lungs.

In the hospital, a doctor told Kimberly Conger, the nurse manager from Community Access Services, which ran the group house where McSweeney lived, that she needed to be on a ventilator. "We discussed the possibility of her being intubated and letting the lung rest, giving her time to heal and letting the antibiotics do their magic," says Conger.

But then the doctor questioned whether it was worth doing, citing McSweeney's "quality of life." Conger says she objected to that. "And he looked at me and goes: 'Oh, she can walk? And talk?' " she says the doctor asked, moving his fingers in the air in a walking motion.

Conger replied: "There's a lot of people who don't walk who have full quality of life."

McSweeney was not moved back to the ICU and was not put on a ventilator. She died on May 10 of severe sepsis because of aspiration pneumonia.

"We believe there was bias and discrimination in the care provided," Anna Keenan-Mudrick, executive director of Community Access Services, told Gelser's committee in June.

A spokeswoman for the hospital, Providence Willamette Falls Medical Center, says: "While we have conversations with patients, family and/or guardians about care options, we do not pressure or force anyone to sign a DNR order, and we are unaware of any evidence to the contrary."

"I just think she could have gone out better," says Barnett. "They owed her more respect than she got."

After McSweeney's death, Barnett says she dealt with a similar case with another client. A 77-year-old man with an intellectual disability contracted COVID-19 and went to another Oregon hospital for treatment. But she says a doctor there, acting unilaterally, reversed the man's legal order for full treatment.

When Barnett and the man's advocates objected, she says the doctor stood firm, saying the man — who is diabetic and intellectually disabled — was "too difficult to treat." Says Barnett: "It was absolutely flooring to me." The man survived and returned home.

One of the most common causes of poor care occurred when someone who had difficulty communicating or had dementia went to the hospital alone. Family and advocates were barred, for the most part, from visiting — even when the person depended on them to communicate.

One Oregon doctor, who asked to remain anonymous in order to speak freely, told NPR about a teenage girl with significant disabilities who was on a ventilator with COVID-19 in the ICU at his hospital.

She had difficulty speaking and, typically, relied on her mother to communicate for her. The hospital arranged a videoconference with the girl and her mother to talk about ongoing care. But when the young woman saw her mother's face on the computer screen, she sobbed uncontrollably. "It was heart wrenching," the doctor told NPR. Eventually, the mother was allowed to visit.

Oregon lawmaker Sara Gelser — here on the floor of the state Senate — introduced a bill to guarantee that people with disabilities get equal care in hospitals during the coronavirus pandemic. Oregon state Sen. James Manning hide caption

Oregon lawmaker Sara Gelser — here on the floor of the state Senate — introduced a bill to guarantee that people with disabilities get equal care in hospitals during the coronavirus pandemic.

In late June, Gelser wrote and co-sponsored an anti-discrimination bill: Senate Bill 1606 . It bars doctors from forcing a do-not-resuscitate or do-not-intubate order on disabled or elderly patients, either as a condition of being admitted to the hospital or as a condition for treatment. It requires doctors to honor a person's medical orders for care.

It allows people with certain disabilities to have a family member or other support person with them during a hospital stay to help explain their medical choices.

That legislation passed the legislature, and Oregon Gov. Kate Brown signed it into law on July 7.

Gelser was surprised that one section of the bill turned out to be controversial. Language that said doctors and health care providers could not discriminate on the basis of disability was stripped from the bill. Health officials worried that the language was too vague and would interfere with individual decision-making.

The debate over denial of care to people with disabilities was a quiet one in Oregon. It was a conversation largely among advocates in the disability and aging communities, medical officials and state officials.

But it resulted in positive change.

• Officials in state health agencies played a role. The Oregon Association of Hospitals and Health Systems started trainings.
• In September, the Oregon Health Authority withdrew the disputed state crisis standards of care. Those are the rules that doctors and hospitals can apply to ration care when it gets scarce. The drafters had failed to adequately reach out to "communities of color, tribal communities, or people with disabilities," the authority said in a letter to Gelser, and as a result the guidelines "have the potential to perpetuate discrimination on the basis of race, age or disability."

Leann Johnson, the health authority's chief equity and inclusion officer, told NPR that the move reflected the agency's plan, announced at the start of 2020, to end health care disparities by 2030.

• In October, Gelser objected that people with intellectual disabilities who lived in group homes and their direct service professionals had been left off the state's priority list to get the COVID-19 vaccine. In November, the state amended its list and they were added. That made Oregon one of the first states — and likely the first, but there is no comprehensive comparison of every state's plan — in the country to prioritize group home residents.

Frazzini reports that the man who back in April had difficulty getting a coronavirus test ran a high fever again in October and returned to the hospital ER. This time he got tested quickly and respectfully.

Frazzini gives the hospital credit for changing. "They really listened," she says.

Frazzini was asked to join the hospital's ethics committee — her first meeting is scheduled for January — to give the hospital perspective about disability.

And on Dec. 8, Oregon announced new " crisis care principles " for health care providers, who were then facing a surge of new COVID-19 patients. Once again, there was fear of needing to ration scarce care. This time, the guidance from the Oregon Health Authority focused on the responsibility of doctors and hospitals to provide care in ways that did not discriminate against people on the basis of disability, race and other categories protected by civil rights law.

"Any approach to triaging care," the new guidance said, cannot "exclude" someone on the basis of an underlying medical condition or a disability. Dana Hargunani, the Oregon Health Authority's chief medical officer, told NPR that the agency is asking doctors and hospitals "to really consider the role that implicit bias has played."

When the Oregon Health Authority announced the new equity principles, officials highlighted the advocacy of DRO and Gelser and thanked them for helping to shape the new plan.

The changes in Oregon echoed the evolution of guidelines in other states. State and national disability groups had brought complaints to the Office for Civil Rights at the federal Department of Health and Human Services, the agency that enforces anti-discrimination laws in health care.

The Office for Civil Rights has announced its own settlements with several states to rewrite their crisis standards of care. Tennessee and Pennsylvania agreed to quit letting doctors use "quality of life" scores to determine who gets scarce care. Connecticut agreed to let family members into hospitals to help people with disabilities who have difficulty communicating. And Utah agreed to bar doctors from issuing blanket do-not-resuscitate orders.

There was one lingering question in all of these cases: Why was care rationed to people with disabilities at a time when Oregon's hospitals were not overcrowded, when there were no shortages of treatment?

In early April, Governor Brown announced that Oregon was sending 140 ventilators to hard-hit New York. "We are all in this together," she said .

So, if there was no shortage, why were McSweeney and the woman in Pendleton denied ventilators?

Gelser — who has an adult son with an intellectual disability — thinks she has an answer.

There has always been a bias against people with disabilities in the health care system, she says. It was largely hidden.

The coronavirus made it visible — and then the virus made it worse.

"COVID has put a giant magnifying glass on inequities in health care delivery" for people with disabilities, Gelser says. "For the first time, we see in a more pressing and public way how deadly that can be."

In the pandemic, doctors — worried about potential shortages for some — made decisions to deny care to others. "So before we even needed to triage," Gelser says, "medical systems were deciding on reserving resources for nondisabled people that the system valued more, in case they ran out of resources later."