essay about disability rights

• Skip to main content
• Keyboard shortcuts for audio player

Book Reviews

In 2 essay collections, writers with disabilities tell their own stories.

Ilana Masad

Buy Featured Book

Your purchase helps support NPR programming. How?

• Independent Bookstores

More than 1 in 5 people living in the U.S. has a disability, making it the largest minority group in the country.

Despite the civil rights law that makes it illegal to discriminate against a person based on disability status — Americans with Disabilities Act passed in 1990 — only 40 percent of disabled adults in what the Brookings Institute calls "prime working age," that is 25-54, are employed. That percentage is almost doubled for non-disabled adults of the same age. But even beyond the workforce — which tends to be the prime category according to which we define useful citizenship in the U.S. — the fact is that people with disabilities (or who are disabled — the language is, for some, interchangeable, while others have strong rhetorical and political preferences), experience a whole host of societal stigmas that range from pity to disbelief to mockery to infantilization to fetishization to forced sterilization and more.

But disabled people have always existed, and in two recent essay anthologies, writers with disabilities prove that it is the reactions, attitudes, and systems of our society which are harmful, far more than anything their own bodies throw at them.

About Us: Essays from the Disability Series of the New York Times, edited by Peter Catapano and Rosemarie Garland-Thomson, collects around 60 essays from the column, which began in 2016, and divides them into eight self-explanatory sections: Justice, Belonging, Working, Navigating, Coping, Love, Family, and Joy. The title, which comes from the 1990s disability rights activist slogan "Nothing about us without us," explains the book's purpose: to give those with disabilities the platform and space to write about their own experiences rather than be written about.

While uniformly brief, the essays vary widely in terms of tone and topic. Some pieces examine particular historical horrors in which disability was equated with inhumanity, like the "The Nazis' First Victims Were the Disabled" by Kenny Fries (the title says it all) or "Where All Bodies Are Exquisite" by Riva Lehrer, in which Lehrer, who was born with spina bifida in 1958, "just as surgeons found a way to close the spina bifida lesion," visits the Mutter Museum in Philadelphia. There, she writes:

"I am confronted with a large case full of specimen jars. Each jar contains a late-term fetus, and all of the fetuses have the same disability: Their spinal column failed to fuse all the way around their spinal cord, leaving holes (called lesions) in their spine. [...] I stand in front of these tiny humans and try not to pass out. I have never seen what I looked like on the day I was born."

Later, she adds, "I could easily have ended up as a teaching specimen in a jar. But luck gave me a surgeon."

Other essays express the joys to be found in experiences unfamiliar to non-disabled people, such as the pair of essays by Molly McCully Brown and Susannah Nevison in which the two writers and friends describe the comfort and intimacy between them because of shared — if different — experiences; Brown writes at the end of her piece:

"We're talking about our bodies, and then not about our bodies, about her dog, and my classes, and the zip line we'd like to string between us [... a]nd then we're talking about our bodies again, that sense of being both separate and not separate from the skin we're in. And it hits me all at once that none of this is in translation, none of this is explaining. "

From the cover of Resistance and Hope: Essays by Disabled People, edited by Alice Wong Disability Visibility Project hide caption

From the cover of Resistance and Hope: Essays by Disabled People, edited by Alice Wong

While there's something of value in each of these essays, partially because they don't toe to a single party line but rather explore the nuances of various disabilities, there's an unfortunate dearth of writers with intellectual disabilities in this collection. I also noticed that certain sections focused more on people who've acquired a disability during their lifetime and thus went through a process of mourning, coming to terms with, or overcoming their new conditions. While it's true — and emphasized more than once — that many of us, as we age, will become disabled, the process of normalization must begin far earlier if we're to become a society that doesn't discriminate against or segregate people with disabilities.

One of the contributors to About Us, disability activist and writer Alice Wong, edited and published another anthology just last year, Resistance and Hope: Essays by Disabled People , through the Disability Visibility Project which publishes and supports disability media and is partnered with StoryCorps. The e-book, which is available in various accessible formats, features 17 physically and/or intellectually disabled writers considering the ways in which resistance and hope intersect. And they do — and must, many of these writers argue — intersect, for without a hope for a better future, there would be no point to such resistance. Attorney and disability justice activist Shain M. Neumeir writes:

"Those us who've chosen a life of advocacy and activism aren't hiding from the world in a bubble as the alt-right and many others accuse us of doing. Anything but. Instead, we've chosen to go back into the fires that forged us, again and again, to pull the rest of us out, and to eventually put the fires out altogether."

You don't go back into a burning building unless you hope to find someone inside that is still alive.

The anthology covers a range of topics: There are clear and necessary explainers — like disability justice advocate and organizer Lydia X. Z. Brown's "Rebel — Don't Be Palatable: Resisting Co-optation and Fighting for the World We Want" — about what disability justice means, how we work towards it, and where such movements must resist both the pressures of systemic attacks (such as the threatened cuts to coverage expanded by the Affordable Care Act) and internal gatekeeping and horizontal oppression (such as a community member being silenced due to an unpopular or uninformed opinion). There are essays that involve the work of teaching towards a better future, such as community lawyer Talila A. Lewis's "the birth of resistance: courageous dreams, powerful nobodies & revolutionary madness" which opens with a creative classroom writing prompt: "The year is 2050. There are no prisons. What does justice look like?" And there are, too, personal meditations on what resistance looks like for people who don't always have the mobility or ability to march in the streets or confront their lawmakers in person, as Ojibwe writer Mari Kurisato explains:

"My resistance comes from who I am as a Native and as an LGBTQIA woman. Instinctively, the first step is reaching out and making connections across social media and MMO [massively multiplayer online] games, the only places where my social anxiety lets me interact with people on any meaningful level."

The authors of these essays mostly have a clear activist bent, and are working, lauded, active people; they are gracious, vivid parts of society. Editor Alice Wong demonstrates her own commitments in the diversity of these writers' lived experiences: they are people of color and Native folk, they encompass the LGBTQIA+ spectrum, they come from different class backgrounds, and their disabilities range widely. They are also incredibly hopeful: Their commitment to disability justice comes despite many being multiply marginalized. Artist and poet Noemi Martinez, who is queer, chronically ill, and a first generation American, writes that "Not all communities are behind me and my varied identities, but I defend, fight, and work for the rights of the members of all my communities." It cannot be easy to fight for those who oppress parts of you, and yet this is part of Martinez's commitment.

While people with disabilities have long been subjected to serve as "inspirations" for the non-disabled, this anthology's purpose is not to succumb to this gaze, even though its authors' drive, creativity, and true commitment to justice and reform is apparent. Instead, these essays are meant to spur disabled and non-disabled people alike into action, to remind us that even if we can't see the end result, it is the fight for equality and better conditions for us all that is worth it. As activist and MFA student Aleksei Valentin writes:

"Inspiration doesn't come first. Even hope doesn't come first. Action comes first. As we act, as we speak, as we resist, we find our inspiration, our hope, that which helps us inspire others and keep moving forward, no matter the setbacks and no matter the defeats."

Ilana Masad is an Israeli American fiction writer, critic and founder/host of the podcast The Other Stories . Her debut novel, All My Mother's Lovers, is forthcoming from Dutton in 2020.

Disability and human rights

Introduction to disability and human rights   , defining disability.

The Convention on the Rights of Persons with Disabilities (“CRPD”) does not provide a definition of disability, but instead provides a broad description intended to be widely inclusive. The CRPD establishes in Article 1 that ‘persons with disabilities’ includes ‘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’. 1 This description of disability shifts the focus toward the social and environmental barriers that hinder an individual’s participation in society rather than on the individual’s impairments.

This approach to disability is called the “social model” of disability. The “social model” recognizes that the exclusion of a person with a disability from society is the result of a barrier or hindrance to the individual’s ability to participate fully, rather than the result of the individual’s inherent inability to participate. For example, if a person cannot access a health clinic because of his/her mobility impairment, it is not his/her inability to walk which is the issue, but rather the clinic’s lack of accessibility.

Global prevalence of disability

Persons with disabilities constitute a significant portion of the population worldwide, yet they remain one of the most marginalized and vulnerable populations. It is difficult to obtain accurate data on the number of people with disabilities worldwide because approaches to measuring disability vary across countries and according to the purpose and application of the data. However, the World Health Survey—a face-to-face household survey conducted in 2002-2004 in 59 countries—estimated that about 650 million adults had a disability, with about 92 million of those adults experiencing very significant disabilities. 2 The survey also demonstrated that the occurrence of disability is higher in low-income countries where about 18% of the population has a disability, in comparison to high income countries where about 11.8% of the population has a disability. 3

Human rights-based approach to disability

Over the past decade, awareness and understanding of issues related to disability rights has grown. In particular, the Convention on the Rights of Persons with Disabilities (CRPD), adopted in 2006 and entered into force on May 3, 2008, has been integral to advancing recognition of the human rights of persons with disabilities. The CRPD provides us with a comprehensive approach to realizing the rights of persons with disabilities.

The CRPD is important for both outlining the rights of persons with disabilities and for changing perceptions of disability. The UN Office of the High Commissioner for Human Rights describes a human rights-based approach to disabilities:

A rights-based approach seeks ways to respect, support and celebrate human diversity by creating the conditions that allow meaningful participation by a wide range of persons, including persons with disabilities. Protecting and promoting their rights is not only about providing disability-related services. It is about adopting measures to change attitudes and behaviours that stigmatize and marginalize persons with disabilities. It is also about putting in place the policies, laws and programmes that remove barriers and guarantee the exercise of civil, cultural, economic, political and social rights by persons with disabilities. 4

Persons with disabilities face wide-ranging human rights abuses including institutionalization, isolation, stigma and discrimination, and lack of access to health, education and employment opportunities. The CRPD sets outs a wide range of rights that address all aspects of life, such as respect for home and the family, education, employment, health, participation in political and public life, participation in cultural life, recreation, leisure and sport, the right to life, freedom from torture or cruel, inhuman or degrading treatment or punishment and the right to equal protection and equal benefit of the law. The CRPD seeks to “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.” 5

The CRPD and Conflicting Law

The CRPD is a relatively recent human rights treaty. The CRPD consolidates and expands on existing international law on the rights of persons with disabilities.  As the UN Department of Public Information notes, “[the CRPD] does not create any ‘new rights’ or ‘entitlements’. What the convention does, however, is express existing rights in a manner that addresses the needs and situation of persons with disabilities.” 6

The CRPD imposes new legal obligations on States and supersedes any prior non-binding international, regional or domestic standards.  However, there are many binding regional and domestic standards that fall short of, or conflict with, the more recent and expansive CRPD standards. For example some standards and case law address forced treatment or confinement where due process was not maintained, but do not question the legitimacy of forced treatment or confinement. Likewise, some standards and case law qualify the right to live in the community, rather than protecting the right absolutely.

This chapter, including the tables, is based upon the CRPD and CRPD-aligned standards. The chapter does not include standards or case law that contravenes or diminishes the rights provided in the CRPD.

How is disability and health a human rights issue?

Introduction.

Using the CRPD as a framework, this section explores a human rights-based approach to health for persons with disabilities, including the social and economic determinants of health.

The CRPD and the right to health

Persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability, under CRPD Article 25. 7 In this context, health is defined as “a state of complete physical, mental and social well-being and not merely the absence of disease or illness.” 8 It is crucial to note that the CRPD establishes that disability is not necessarily a medical condition and emphasizes the role of environmental and attitudinal barriers, rather than an impairment (if it exists at all) in hindering full and effective participation in society on an equal basis with others. While persons with disabilities may at times need to access health services for medical conditions related to their disabilities, this should not be presumed to be their primary need for health services.

The right to health in Article 25 must be interpreted in the context of the core principles of CRPD outlined in Article 3. The core principles include non-discrimination; participation; autonomy, including the freedom to make one’s own choices; social inclusion; gender equality; and equality of opportunity. These principles are overarching and should guide interpretation of other CRPD articles.

Progressive Realization and Non-Discrimination

The right to health established in Article 25 must also be read in light of Article 4(2) which requires States to progressively realize economic and social rights. Progressive realization means that “States parties have a specific and continuing obligation to move as expeditiously and effectively as possible” 9 towards the full realization of the right to health. The Committee on the Rights of Persons with Disabilities recognizes that no State is able to realize the right to health immediately. For example, States may have to develop health care infrastructure, train health professionals, or implement health care legal reforms to begin realizing the right to health. The obligation for States to progressively realize the right to health requires them to make continuing efforts to implement the right, recognizing that it is a process achieved over time.

States are immediately obligated, upon ratifying the CRPD, to ensure non-discrimination. The obligation to guarantee non-discrimination under the CRPD is the same as required under the ICESCR and the CRC, which “all impose an immediate obligation to guarantee that economic, social and cultural rights are enjoyed without discrimination. Accordingly, measures towards the progressive achievement of rights must at all times be guided by, and comply with, the basic requirement of non-discrimination.” 10 The obligation to guarantee non-discrimination must be immediately implemented “irrespective of the level of available resources.” 11 The Committee on Economic, Social and Cultural Rights explains that non-discrimination is an immediate obligation for all States, regardless of resources because “many measures, such as most strategies and programmes designed to eliminate health-related discrimination, can be pursued with minimum resource implications through the adoption, modification or abrogation of legislation or the dissemination of information.” 12

Access to Health Services

The CRPD requires that States Parties “take all appropriate measures to ensure access for persons with disabilities to health services that are gender-sensitive, including health-related rehabilitation.” 13 Persons with disabilities face a range of barriers in accessing health care services, including cost, accessibility, stigma and discrimination and lack of or inadequacy of services and resources. 14 Without equal access to health care, “people with disabilities are at serious risk of delayed diagnoses, secondary co-morbidities, persistent abuse, depleted social capital, and isolation.” 15

Both the CRPD and the Committee on Economic, Social and Cultural Rights (CESCR) provide guidance on what accessibility means and how it should be understood in the context of health. The CRPD broadly defines accessibility in Article 9 as “access, on an equal basis with others, to the physical environment, to transportation, to information and communications … and to other facilities and services open or provided to public, both in urban and rural areas.” 16 CESCR explains in General Comment 14 on the right to health that the four components of accessibility are non-discrimination, physical accessibility, economic accessibility, and information accessibility. 17

Non-discrimination – Equal Access to Health Care Non-discrimination is a central principle to the CRPD and is critical for ensuring equal access to health care for persons with disabilities. The CRPD defines in Article 2 that:

“Discrimination on the basis of disability” means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation. 18

All persons with disabilities have the same general health care needs as everyone else and require access to mainstream health care services on an equal basis as everyone else. 19 Also, with the move away from institutionalized living towards community living, it is crucial that health care services and facilities are developed and accessible to all persons with disabilities.

Physical Accessibility Physical accessibility is a critical component for ensuring equal access to health care for persons with disabilities. Physical barriers to accessing health care include both environmental and infrastructural barriers as well as geographical barriers, such as access to rural health centers.

The CESCR explains in General Comment 14 on the right to health that physical accessibility is defined as follows:

Health facilities, goods and services must be within safe physical reach for all sections of the population, especially vulnerable or marginalized groups, such as … persons with disabilities … Accessibility also implies that medical services and underlying determinants of health, such as safe and potable water and adequate sanitation facilities, are within safe physical reach, including in rural areas. Accessibility further includes adequate access to buildings for persons with disabilities.

The CRPD also focuses on geographical access to health care, establishing in Article 25(c) that States parties must “[p]rovide these health services as close as possible to people’s own communities, including in rural areas.” Provision of health care facilities to individuals in rural areas ensures that everyone is able to physically reach health care facilities. The provision of health services within an individual’s community is critical for persons with disabilities who have a right to access health services within their community.

In addition to access to health facilities, physical access extends to accessible medical equipment and services. For example, women with mobility impairments are often unable to access breast and cervical cancer screening because examination tables are not height-adjustable and mammography equipment only accommodates women who are able to stand. 20

Economic Accessibility The CRPD provides in Article 25 that States parties must “provide persons with disabilities the same range, quality and standard of free or affordable health care and programmes as provided to other persons …” According to the 2002-2004 World Health Survey, affordability was the primary reason why persons with disabilities, across gender and age groups, did not receive needed health care in low-income countries. 21 In its study of 51 countries, the World Health Survey reported that 32–33% of nondisabled men and women cannot afford health care, compared with 51–53% of persons with disabilities. 22

The CRPD establishes in Article 25 that States parties must “[p]rohibit discrimination against persons with disabilities in the provision of health insurance … which shall be provided in a fair and reasonable manner.” However, persons with disabilities have lower rates of employment, making it more difficult for them to afford health insurance or less likely to covered if health insurance is usually provided by the workplace. Those persons with disabilities who are provided health insurance may be denied coverage due to their pre-existing conditions or discriminatory coverage policies.

Affordable health insurance is an important measure for addressing barriers to financing and affordability. Measures can include targeting people with disabilities who have the greatest health care need, providing general income support, reducing or removing out of pocket payments to improve access, eliminating discriminatory provisions, and providing incentives to health providers to promote access. 23

Information Accessibility The form or the content of information can serve as barriers to accessing information for many persons with disabilities. 24 For example, presenting information in Braille and sign language are two different forms of communication which make information accessible to individuals who otherwise may experience barriers. Similarly, using easy-to-read language or using pictures and cartoons are different methods for changing the content of information to make it more accessible.

In the health context, access to information is crucial for patients to engage with their health care providers and to receive and understand relevant health information. Access to information in the health context extends to accessible forms, informational brochures and communication with health care providers. Access to information is also important for navigating the health care system. Information provided through referral systems, waiting lists or booking systems for appointments should also be accessible to everyone and facilities should also be outfitted with proper signage to and within buildings.

Informed consent

The CRPD establishes in Article 25 that States parties must “[r]equire health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent …” The UN Special Rapporteur on the right to health, Anand Grover, defines informed consent as the following:

Informed consent is not mere acceptance of a medical intervention, but a voluntary and sufficiently informed decision, protecting the right of the patient to be involved in medical decision-making, and assigning associated duties and obligations to health-care providers. Its ethical and legal normative justifications stem from its promotion of patient autonomy, self-determination, bodily integrity and well-being. 25

Informed consent is supported by the general principles in CRPD Article 3 which include individual autonomy and respecting the freedom of individuals to make decisions about their life.

Violations of informed consent may, in some instances, amount to torture. In his most recent report, the Special Rapporteur on torture, Juan Méndez, called on all countries to ban all non-consensual and forced medical interventions against persons with disabilities. 26 He explains that “Both this mandate and United Nations treaty bodies have established that involuntary treatment and other psychiatric interventions in health-care facilities are forms of torture and ill-treatment.” 27

Persons with disabilities have the right to provide or withhold consent for any medical intervention or health service and should be involved and communicated with directly about their health. Health professionals should speak directly with individual them self about their health matters and health choices, and not speak solely to their carers, relatives or proxies. 28

For more information on informed consent generally, please see Chapter 1 on Patient Care.

Sexual and reproductive care of the same range, quality and standard of care as others

The CRPD establishes in Article 25 that States parties must provide persons with disabilities the same sexual and reproductive health care and programmes as provided to other persons. Sexual and reproductive rights must be guaranteed for persons with disabilities and yet persons with disabilities often experience gross violations of their rights and cannot access sexual and reproductive services. This quote from a guide on gender mainstreaming in public disability policies explains the content of sexual and reproductive rights respectively:

Sexual rights, understood to mean liberty to decide freely and responsibly on all questions related to sexuality, implies also the right to exercise one’s sexuality safely, free from discrimination, coercion and violence; the right to physical and emotional pleasure; the right to freely-chosen sexual orientation; the right to information on sexuality; and the right to access sexual health services. Reproductive rights, taken to mean the freedom and independence each individual has to decide responsibly if she or he wants to have children or not, how many, when and with whom, encompasses also the right to access information, education and the means to do so; the right to take decisions on reproduction free from discrimination, coercion and violence; the right to access quality primary healthcare, and the right to measures to protect motherhood. All these rights must be fully guaranteed for female adolescents and women with disabilities under conditions of equality, free consent and mutual respect: to date this has not been the case. 29

Statistics reveal that adolescents and adults with disabilities are more likely to be excluded from sexual and reproductive health education and face stigma, prejudice, and denial of access to sexual and reproductive health services. 30 It is commonly and wrongfully assumed that persons with disabilities are not sexually active and therefore do not need sexual and reproductive health information and services.

Women with disabilities often have their reproductive rights denied, and some are subjected to forced marriages, forced abortions and forced sterilizations. 31 Women with disabilities are particularly vulnerable to forced sterilizations that are performed under the auspices of legitimate medical care or the consent of others in their name. 32 Sterilization is defined as “a process or act that renders an individual incapable of sexual reproduction.” In his most recent report, the Special Rapporteur on torture, Juan Méndez, asserted that “forced abortions or sterilizations carried out by State officials in accordance with coercive family planning laws or policies may amount to torture.” 33 Forced sterilization of girls and women with disabilities is driven by social factors, including minimizing inconvenience to caregivers, the lack of adequate measures to protect against the sexual abuse and exploitation of women and girls with disabilities, and a lack of adequate and appropriate services to support women with disabilities in their decision to become parents. The International Federation of Gynecology and Obstetrics (FIGO) issued updated guidelines in 2011, reaffirming the rule of no sterilization without informed consent of the women herself (that of a family member or guardian does not amount to consent,) and requiring both the provision of information in accessible formats and the time and support to make a decision. 34

Quality health care services and provision of specialized services

The CRPD establishes in Article 25 that States parties must “provide persons with disabilities with the same range, quality and standard of free or affordable health care programmes as provided to other persons.” Research demonstrates that persons with disabilities receive poorer health care services and consequently experience poorer health outcomes. Persons with disabilities are also more vulnerable to deficiencies in healthcare services, which increase their risk of secondary conditions, co-morbid conditions and age-related conditions.

For example, women with disabilities receive less screenings for breast and cervical cancer than women without disabilities, and people with intellectual impairments and diabetes are less likely to have their weight checked. 35 The Disability Rights Commission in the UK conducted a formal investigation into inequalities in health and found “that people with mental illness and people with intellectual impairments not only experienced more ill-health, but received a poorer service from health professionals and as a consequence they had higher rates of morbidity and mortality.” 36

People with disabilities have the same healthcare needs as everyone else, especially as they age, and require screening, preventive, and wellness-oriented care as provided to other persons. Health care providers must be taught that “having a disability is not incompatible with being healthy and it should not be assumed that the issue for which consultation in being sought is related to disability.” 37

Measures for addressing barriers to service delivery include: targeting interventions to complement inclusive health care, including people with disabilities in general health care services, improving access to specialist health services, providing people-centered health services, coordinating services and using information and communication technologies. 38

Health professionals

The CRPD establishes in Article 25 that States parties must “[r]equire health professionals to provide care of the same quality to persons with disabilities as to others … by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care.” States must also address human resource barriers to quality healthcare for people with disabilities by integrating disability education into undergraduate training, providing health care workers with continuing education, and supporting health care workers with adequate resources. 39

The CRPD prioritizes health care training and awareness as well as the creation of ethical standards in an effort to ensure that health professionals provide the same quality of care to persons with disabilities as to others. Health care education on disability should include a range of topics including clinical information, communication strategies and an introduction to a human rights approach to disability. Training beyond clinical information is important as explained in this article:

Doctors and other health professionals who encounter disabled people in their professional practice should be aware not only of the causes, consequences, and treatment of disabling health conditions, but also of the incorrect assumptions about disability that result from stigmatised views about people with disabilities that are common within society… it is important for professionals to understand not just disease, but also the experience of living with disability. 40

Health care professional training on the rights of persons with disabilities combats stigma and equips providers with the awareness necessary to provide persons with disabilities quality health care.

Social determinants of health and persons with disabilities

In General Comment 14, CESCR explains that the right to health is “an inclusive right extending not only to timely and appropriate health care but also to the underlying determinants of health, such as access to safe and potable water and adequate sanitation, an adequate supply of safe food, nutrition and housing, healthy occupational and environmental conditions, and access to health-related education and information, including on sexual and reproductive health.” 41 In addition to access to services, the right to health encompasses social factors that affect health, including gender equality, health-related education and information, and adequate nutrition. 42 Moreover, CESCR explains that the determinants of health must also be physically accessible, economically affordable, available in sufficient quantity and provided in a non-discriminatory manner. 43

The determinants of health, as described above, “are in turn shaped by a wider set of forces: economics, social policies, and politics.” 44 Michael Marmot explains that “material deprivation is not simply a technical matter of providing clean water or better medical care. Who gets these resources is socially determined.” 45 Persons with disabilities, as a marginalized population, are more vulnerable to the social and economic determinants of health and consequently experience poorer health outcomes. As Richard Wilkinson and Michael Marmot explain, “It’s not simply that poor material circumstances are harmful to health; the social meaning of being poor, unemployed, socially excluded, or otherwise stigmatized also matters.” 46

Persons with disabilities are “disproportionately poor, and have historically experienced diverse forms of social exclusion.” 47 For example, the Special Rapporteur on Health wrote that “Services to ensure the underlying determinants of health, includ[e] adequate sanitation, safe water and adequate food and shelter. Persons with mental disabilities are disproportionately affected by poverty, which is usually characterized by deprivations of these entitlements.” 48 Therefore, “Inclusive health-care models will be key tools for governments creating poverty-reduction programmes due to the link between disability and poverty.” 49

The social and economic determinants of health for persons with disabilities are essential to consider. “Injustices occur when disability is overmedicalised. Seeing difficulties purely as individual problems can ignore structural issues that contribute to health status, such as poverty, environmental barriers, and social exclusion.” 50 A human rights-based approach that addresses the social and economic determinants of health, including discrimination, is required to address the persistent inequalities of persons with disabilities in health status and access to health care.

Right to Education

Education is a social determinant of health, and lack of education can limit the enjoyment of the right to health and other economic and social rights. Generally, lower levels of education are associated with poorer health outcomes including illness, malnutrition and higher rates of infant mortality. It is important to consider access to education and quality education as part of the broader picture of health.

The CRPD provides in Article 24 that persons with disabilities must not be excluded from the general education system. States parties must enact legislation and implement policies to develop inclusive education systems. The CRPD establishes that when free primary education is provided, people with disabilities may not be excluded on the basis of their disability. When developing inclusive education systems, governments must also account for additional funding requirements and allocate appropriate funds from the budget.

The CRPD establishes that State parties must provide persons with disabilities the support necessary to facilitate their effective education. However, many schools do not facilitate education for persons with disabilities, thereby creating barriers to academic and social development. Barriers to effective education are diverse and include curriculum and pedagogy issues, inadequate training and support of teachers, physical inaccessibility, and labelling, violence, bullying, abuse and attitudinal problems. 51 The CRPD explains that States shall provide effective individualized support measures to maximize academic and social development. Societal attitudes of stakeholders, including teachers, school administers and other students are also an important factor in facilitating equal education for persons with disabilities. 52

Right to Work and Employment

The right to work and employment is also a social determinant of health and must be considered in the broad picture of health. Persons with disabilities have low participation in the labor market and, when employed, are frequently employed in low-paying positions. 53 It is not surprising that as a result, persons with disabilities are disproportionately poor and socially marginalized. Work is a means to gain a living as well as participate in one’s community. The CRPD provides in Article 27 that persons with disabilities have the right to work on an equal basis with other, including the “right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities.” 54

Persons with disabilities face a range of barriers to employment opportunities, most significantly discrimination and stigma, lack of accommodation, lack of accessible transport, and denial of education and/or vocational training. 55 The CRPD guides States parties to focus on non-discrimination laws, accessibility, reasonable accommodation, and positive measures as means to implement the right to work for persons with disabilities.

Violations of the right to health

Freedom from violence, abuse and exploitation.

Persons with disabilities are vulnerable to violence, abuse and exploitation, especially when persons with disabilities are reliant upon others for support and care. 56  Persons with disabilities are susceptible to violations within their home and by family members, caregivers, health care professionals and community members. 57 People with disabilities also experience higher rates of corporal punishment in schools. 58 Persons with disabilities are also vulnerable to sexual violence, sexual abuse and sexual exploitation, and are up to three times more likely than non-disabled people to face physical and sexual abuse and rape. 59

CRPD Article 16 on freedom from violence, abuse and exploitation provides detailed directives for countries on legislation, programs, monitoring systems and other measures to prevent and address violence against persons with disabilities. Under the CRPD, States parties must implement recovery and reintegration programs for persons with disabilities who were victims of violence, abuse or exploitation. Even though persons with disabilities are more vulnerable to violence, abuse and exploitation, they face barriers to accessing physical, cognitive and psychological rehabilitation services and legal interventions.

Freedom from Torture

In his most recent report, the Special Rapporteur on torture, Juan Méndez, writes that persons with disabilities are vulnerable to torture in the health care setting. The report affirms that involuntary and forced medical treatment in as well as involuntary commitment to health-care facilities and institutions are forms of torture and ill-treatment. He writes that “in the context of health care, choices by people with disabilities are often overridden based on their supposed “best interests”, and serious violations and discrimination against persons with disabilities may be masked as “good intentions” of health professionals.” 60 The report explains that violations cannot be justified by claims of “medical necessity,” and emphasizes the fundamental need for free, full, and informed consent by patients for any medical procedures. 61

The following examples have been recognized by the Special Rapporteurs on torture, Méndez and Nowak, as forms of torture in the health care setting. All of these practices are prohibited under the CRPD 62 but may rise to the level of torture in the following circumstances:

• Forced administration of psychiatric medication without free and informed consent or against the individual’s will, under coercion or as a form of punishment. Also, “[t]he administration of drugs, such as neuroleptics, which cause trembling, shivering, and contractions, and make the individual apathetic and dull his or her intelligence has been recognized as a form of torture.” 63
• Medical experimentation or medical treatments without consent including abortion, sterilization, electroshock treatment and psychosurgery.
• The use of electroshock treatment (also a form of forced and non-consensual medical interventions). In writing about prisoners, the Special Rapporteur explained that “unmodified ECT may inflict severe pain and suffering and often leads to medical consequences, including bone, ligament and spinal fractures, cognitive deficits and possible loss of memory. It cannot be considered as an acceptable medical practice, and may constitute torture or ill-treatment.” 64
• The use of restraints or seclusion for both long and short-term application (also a form of forced and non-consensual medical interventions). There have been reports of persons with disabilities tied, chained or handcuffed to their beds or chairs for prolonged periods. 65 Overmedication may also be considered a form of chemical restraint. The Special Rapporteur writes that “[i]t is important to note that “prolonged use of restraint can lead to muscle atrophy, life-threatening deformities and even organ failure, ‘and exacerbates psychological damage.’” The Special Rapporteur notes that there can be no therapeutic justification for the prolonged use of restraints, which may amount to torture or ill-treatment.” 66
• Deprivation of liberty through involuntary commitment to psychiatric hospitals or institutions. “Deprivation of liberty that is based on the grounds of a disability and that inflicts severe pain or suffering could fall under the scope of the Convention against Torture (A/63/175, para. 65). In making such an assessment, factors such as fear and anxiety produced by indefinite detention, the infliction of forced medication or electroshock, the use of restraints and seclusion, the segregation from family and community, etc., should be taken into account.” 67

The Special Rapporteur against torture notes that all of the above practices are banned under the CRPD. States are urged to prohibit all forced and non-consensual medical treatment and to require the free and informed consent of patients prior to performing medical treatment. 68 As well, the Special Rapporteur against torture recommends that States abolish “[l]egislation authorizing the institutionalization of persons with disabilities on the grounds of their disability without their free and informed consent” citing to Article 14(1)(b) of the CRDP which provides that “the existence of a disability shall in no case justify a deprivation of liberty.” 69 Instead, the Special Rapporteur recommends that States “[r]eplace forced treatment and commitment by services in the community” that “meet needs expressed by persons with disabilities and respect the autonomy, choices, dignity and privacy of the person concerned…” 70

How is institutional living a human rights issue and what is community living?

This section focuses on CRPD Article 19 on the right of persons with disabilities to live independently and to be included in the community. CRPD Article 19 provides that persons with disabilities have the right to live in the community and to participate in society as equal citizens. This right is referred to as “the right to community living” within this chapter. The right to community living reinforces that persons with disabilities are not restricted in their choices and opportunities because of their own limitations, but rather are restricted as a result of social and physical environmental barriers to their full and equal participation within their communities. The focus of community living is to create an enabling social and physical environment so that all persons are able to be included and participate in their community.

This section will begin by discussing violations of Article 19 on community living, focusing on segregation in institutions as well as isolation in the community, including in group home and home living arrangements. Additional human rights violations that occur in institutions including heightened risk of exploitation, violence and abuse and will also be explored in the first section. The chapter will then examine the right to community living and how this right may be implemented. As states move away from institutionalized living, it is important to understand what alternatives are available that respect the right to community living.

The analysis in this section of the chapter is based solely upon CRPD Article 19.

How is institutional living a human rights issue?

Institutionalization violates the right to community living                                                                       Persons with disabilities are frequently segregated in institutions against their will where they are denied the opportunity to make decisions about their lives or participate in the community as equal citizens. Persons with disabilities are often deprived of their right to live independently and instead are placed in residential institutions—a process known as “institutionalization.” The term ‘institutionalization’ is used to describe a person with a disability who has been confined to an institution, often against their will, and deprived of the ability to make decisions about their lives.

The most common conception of an institution is a large, long-term residence facility. However, rather than focus upon a set of defining characteristics of institutional residences, human rights advocates focus on the culture of institutions and their effect upon the individual as portrayed in the following description:

An institution is any place in which people who have been labelled as having a disability are isolated, segregated and/or congregated. An institution is any place in which people do not have, or are not allowed to exercise control over their lives and day to day decisions. An institution is not defined merely by its size. 71

People with disabilities are frequently segregated in institutions against their will where they are denied the opportunity to make decisions about their lives or participate in the community as equal citizens.

A large number of children and adults with disabilities are institutionalized globally. The United Nations (UN) estimates that up to eight million children live in institutions. 72 The UN figure is likely to be an underestimate, given that data collection and reporting in many countries is poor. For example, a European Commission-funded study of European Union member states and Turkey found that there are almost 1.2 million people with disabilities living in institutions in these countries alone. 73 The two largest groups who are institutionalized are people with mental health problems and people with intellectual disabilities. 74

Institutionalization of persons with disabilities persists, and new institutions for persons with disabilities continue to be built. The European Union seeks to promote the social inclusion of people with disabilities. However, even in countries that are members of the European Union little has been done to address the institutionalization of people with disabilities and new institutions for people with disabilities continue to be built in some EU member states.

CRPD Article 19 obligates States parties to recognize the right of persons with disabilities to live in the community with choices equal to others and to ensure that they have the opportunity to choose their place of residence, and where and with whom they live. While CRPD Article 19 does not make specific reference to closing institutions, its provisions indicate that this is required. For example, the requirement that States parties ensure that persons with disabilities have access to community services that support their social inclusion and “prevent isolation or segregation from the community” is incompatible with persons continuing to be placed in institutions. 75

Segregation in institutions isolates individuals from the community Segregation in long-stay institutions, such as psychiatric facilities, social care homes and orphanages, is the most significant human rights violation experienced by many children and adults with disabilities. The segregation of persons with disabilities in long-stay institutions is in itself a human rights abuse because it deprives them of their right to community living and to live independently. Furthermore, institutionalization reinforces the stigma and prejudice directed towards persons with disabilities and perpetuates the misconceptions that they are incapable or unworthy of participating in community life. 76

In some countries, long-stay institutions are situated in remote rural areas. This means that residents rarely, if ever, receive visitors and have little or no communication with the outside world—in in many cases for the rest of their lives. For example, a 2004 study of residential institutions in France, Hungary, Poland, and Romania found that “[c]ontact with family, friends and community is limited.” 77

Segregation in institutions denies the right to make choices Institutional living denies persons with disabilities the right to choose where they live, how they live, and with whom they associate. Institutional life is inherently a strictly controlled living and does not provide opportunities for individuals to make choices. 78

Segregation in institutions limits access to services within the community Conditions within many institutions are poor and residents are not provided with adequate support or services, including health and rehabilitation services. For example, the 2004 study mentioned above found that “[r]esidents often live lives characterized by hours of inactivity, boredom and isolation” and that “[s]taff numbers are frequently too low to provide habilitation and therapy.” 79

Segregation in institutions limits participation in the community Institutionalized persons with disabilities face major challenges in exercising their fundamental rights to participate in the community. Particularly, institutionalized individuals are denied full and equal access to education and employment, two major methods of community participation. Institutionalized individuals are often denied educational opportunities, being either excluded from the education system or provided segregated or poor quality education. Likewise, persons with disabilities are often denied opportunities to work in the community. Some programs provide employment opportunities where persons with disabilities are grouped together and given menial tasks, disregarding the individual’s choices and right to participate in the community.

Isolation within the community and isolation by improper service delivery violate the right to community living

Individuals living in a home or group home setting are also subject to violations of the right to live in the community. It is not the size of the residence that determines whether the right to live in community has been violated. Rather, the right to community is violated when an individual is denied the right to live independently, to exercise control over one’s life, and to participate in one’s community.

Violations of the right to community living occur when persons with disabilities living in a home or group home are isolated or segregated as a result of how services are delivered or by a lack of services available in the community. Violations occur:

… when people with disabilities who need some form of support in their everyday lives are required to relinquish living in the community in order to receive that support; when support is provided in a way that takes away people’s control from their own lives; when support is altogether withheld, thus confining a person to the margins of the family or society; or when the burden is placed on people with disabilities to fit into public services and structures rather than these services and structures being designed to accommodate the diversity of the human condition. 80

This means that a person is denied their right to live in the community if he/she is prohibited from leaving the house, or faces barriers to accessing education or health services, or pursuing employment. Not only do structural barriers such as inaccessible places, technologies, or services cause isolation and segregation, but stigma and a lack of support within the community can also results in isolation of persons with disabilities from their communities. 81 These social, physical, and economic barriers or hindrances prevent full participation in the community, and constitute violations of CRPD Article 19.

Persons with disabilities living in institutions experience additional violations of their human rights, beyond the right to community living.

Persons with disabilities living in institutions are at higher risk of torture and other cruel, inhuman or degrading treatment or punishment, in violation of CRPD Article 15. Reports have shown that residents of institutions are subjected to serious and sustained human rights violations, ranging from inadequate food, heating and clothing to barbaric treatment such as the unmodified (without anaesthesia or muscle relaxants) use of electro-convulsive therapy, the use of cage beds, sexual abuse, forced sterilisation and other forms of “treatment” without their consent. 82

The United Nations Special Rapporteur on torture and other cruel, inhuman or degrading treatment of punishment (Special Rapporteur on Torture) explains the vulnerability of persons with disabilities in institutions to torture:

Torture, as the most serious violation of the human right to personal integrity and dignity, presupposes a situation of powerlessness, whereby the victim is under the total control of another person. Persons with disabilities often find themselves in such situations, for instance when they are deprived of their liberty in prisons or other places, or when they are under the control of their caregivers or legal guardians. In a given context, the particular disability of an individual may render him or her more likely to be in a dependant situation and make him or her an easier target of abuse. However, it is often circumstances external to the individual that render them “powerless”, such as when one’s exercise of decision-making and legal capacity is taken away by discriminatory laws or practices and given to others. 83

Torture against persons with disabilities has been widely reported and documented within institutions. Persons with disabilities, when committed to a residential institution for long-term stay, are dependent upon the institution for their care, support and social needs. Persons with disabilities have been subjected to neglect, severe forms of restraint and seclusion, as well as physical, mental and sexual violence inside institutions. 84 A lack of reasonable accommodation in detention facilities can increase the risk of neglect, violence, abuse, torture and ill-treatment. 85

Torture in institutions must be addressed by prohibiting and terminating all institutionalized living. The Special Rapporteur on Torture, Juan Méndez, writes in his 2013 interim report that “The Committee on the Rights of Persons with Disabilities has been very explicit in calling for the prohibition of disability-based detention, i.e. civil commitment and compulsory institutionalization or confinement based on disability. It establishes that community living, with support, is no longer a favourable policy development but an internationally recognized right.” 86

What is the human rights-based approached of community living?

Crpd article 19: living independently and being included in the community.

States parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

(b) Persons with disabilities have access to a range of in-house, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

(c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

Right to community living

CRPD Article 19 establishes that people with disabilities have a right to live in the community and to participate in society as equal citizens. By ratifying the CRPD, States parties make a commitment to ensuring that persons with disabilities can live and participate fully in their communities. The right to community living requires the closing of institutions and prohibiting institutionalized living. 87 Therefore, governments must provide the support and structures that enable persons with disabilities to live and participate in the community. “This will encompass a range of services and supports such as housing, including supported housing, care in the family home, social work support, and supported employment, as well as access to mainstream services such as health care.” 88

Community living is closely linked with other human rights including the right to liberty, non-discrimination, bodily integrity, privacy, and freedom from torture, violence, exploitation, and abuse. However, community living is more than the realization of these rights. “The core of the right, which is not covered by the sum of the other rights, is about neutralising the devastating isolation and loss of control over one’s life, wrought on people with disabilities because of their need for support against the background of an inaccessible society.” 89

Article 19 establishes that States parties can ensure full inclusion and participation in the community by (a) providing persons with disabilities to opportunity to choose where and with whom they live; (b) providing a range of support services; and (c) ensuring that all public services are provided to persons with disabilities on an equal basis. These three components of community living are each important to realizing community living:

1. Choice. Ensuring that persons with disabilities have the opportunity to choose where and with whom they live implicates the right to equal recognition before the law (Art 12 on legal capacity). Article 12 of the CRPD affirms the right of everyone to make their own decisions. Article 12(2) states that “States Parties shall recognize that persons with disabilities enjoy legal capacity on an on equal basis with others in all aspects of life.” Therefore, current state laws on involuntary commitment and guardianship should be revisited in light of the rights articulated in Article 12 and Article 19.

2. Individualized support services. In order to ensure that persons with disabilities are enabled to live in the community, they must have access to a full range of services including housing and community support services, which includes personal assistance. Community support services could include a broad range of services including access to social workers, supported employment and access to health care. The CRPD establishes that access to all services necessary to “to prevent isolation or segregation from the community” is an essential component of the right to community living.

Many countries do not have the resources necessary to provide extensive services. However the CRPD provides in Article 4(2) that States parties are obligated to “take measures to the maximum of its available resources … with a view to achieving progressively the full realization of these rights.” Therefore, States parties must continuously strive to implement the right to live in the community by taking steps over time and to the maximum of their resources. This extends to the State’s obligation to provide the resources and support services necessary to realize the right to community living for persons with disabilities.

3. Inclusive community services. Article 19 establishes that community services and facilities for the general population must be available on an equal basis to persons with disabilities and are responsive to their needs. This means that all public services and facilities must accessible to persons with disabilities, and reasonable accommodations should be made.

Implementing the right to community living

Governments must make a commitment to community living in order to ensure the right of persons with disabilities to living in the community. The former Council of Europe’s Commissioner for Human Rights, Thomas Hammarberg recommends to “…set deinstitutionalisation as a goal and develop a transition plan for phasing out institutional options and replacing them with community-based services, with measurable targets, clear timetables and strategies to monitor progress.” 90

When implementing community living policies and programs, governments should be guided in all decisions by the CRPD, especially the CRPD general principles. There is “less clarity with regard to the mechanisms that replace institutionalisation and would constitute a human rights-based response.” 91 Effective deinstitutionalisation requires an understanding that the right to community living is more than just access to the physical placement in the community; rather, living in the community is linked to issues of autonomy and choice. 92

There are also budgetary considerations that must be accounted for in implementing the right to community living. “For living independently and being included in the community to become a reality, social policy reform is needed, which has budgetary implications, involves multiple stakeholders, and necessitates coordination across government ministries and local authorities.” 93

To provide guidance on key areas of work that governments will need to take to comply with CRPD Article 19, the Open Society Public Health Program has developed a checklist. 94 The ten action points from this list are:

A Community for All: A Guide for Monitoring the Implementation of Article 19 of the Convention on the Rights of Disabilities

• Commit to transforming the system from institutional services to community- based services
• Provide explicit recognition of the right to community living for all (the right of all persons with disabilities to live in the community, ‘with choices equal to others’)
• Develop a national strategy for transforming the system from institutional placements to community-based services
• Establish mechanisms to enable the participation of civil society, in particular, people with disabilities and their families
• Develop links with experts (international and national)
• Review legislation, policies and practices relevant to the implementation of Article 19
• Review existing services for people with disabilities
• Ensure transparency and accountability in the use of public funds
• Establish mechanisms for data collection
• Establish mechanisms for periodic review of the action plan and national strategy

Organizations are beginning to develop resources and tools to provide guidance on the process of deinstitutionalization and the transition to community living, and many of these are listed in the resources section of this chapter. For example, the European Expert Group on the Transition from Institutional to Community-based Care has published a resource that provides detailed guidance on transitioning from institutionalization to community living called “Common European Guidelines on the Transition from Institutional to Community Based Care” 95 as well as a toolkit on the use of European Union Funds.

1 United Nations General Assembly, Convention on the Rights of Persons with Disabilities, A/RES/61/106, Art. 1 (2006). http://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx .

2 World Health Organization, World Report on Disability (2011). http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf .

4 UN Office of the High Commissioner for Human Rights, Monitoring the Convention on the Rights of Persons with Disabilities: Guidance for Human Rights Monitors (2010). http://www.ohchr.org/Documents/Publications/Disabilities_training_17EN.pdf .

5 United Nations General Assembly, Convention on the Rights of Persons with Disabilities, A/RES/61/106, Art. 1 (2006). http://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx .

6 United Nations, Convention on the Rights of Persons with Disabilities, “Why a Convention?” http://www.un.org/disabilities/convention/questions.shtml .

7 United Nations General Assembly, Convention on the Rights of Persons with Disabilities, A/RES/61/106, Art. 25 (2006). http://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx .

8 World Health Organization, “Definition of Health.” http://www.who.int/about/definition/en/print.html .

9 UN Nations Committee on Economic, Social, and Cultural Rights, General Comment No. 3: The Nature of States Parties Obligations, E/1991/23 (Dec. 14, 1990). http://www2.ohchr.org/english/bodies/cescr/comments.htm .

10 United Nations Economic and Social Council (2007). “Report of the United Nations High Commissioner for Human Rights”, E/2007/82, 25 June. http://ap.ohchr.org/documents/alldocs.aspx?doc_id=15584 .

12 UN Nations Committee on Economic, Social, and Cultural Rights, General Comment No. 14: The Right to the Highest Attainable Standard of Health, E/C.12/2000/4 (Aug. 11, 2000). http://www2.ohchr.org/english/bodies/cescr/comments.htm .

13 United Nations General Assembly, Convention on the Rights of Persons with Disabilities, A/RES/61/106, Art. 25(a) (2006). http://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx .

14 World Health Organization, World Report on Disability (2011). http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf .

15 Tomlinson M et al, “Health care and the UN Disability Rights Convention” The Lancet, 374, (Nov. 28, 2009).

16 United Nations General Assembly, Convention of the Rights of Persons with Disabilities, A/RES/61/106, Art. 9(1) (2006). http://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx .

17 UN Nations Committee on Economic, Social, and Cultural Rights, General Comment No. 14: The Right to the Highest Attainable Standard of Health, E/C.12/2000/4 (Aug. 11, 2000). http://www2.ohchr.org/english/bodies/cescr/comments.htm .

18 United Nations General Assembly, Convention on the Rights of Persons with Disabilities, A/RES/61/106, Art. 2 (2006). http://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx .

19 World Health Organization, Disability and health, Fact Sheet (Nov 2012). http://www.who.int/mediacentre/factsheets/fs352/en/index.html .

21 World Health Organization, World Report on Disability (2011). http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf .

24 Office of the High Commissioner for Human Rights, Monitoring the Convention on the Rights of Persons with Disabilities: Guidance for Human Rights Monitors (2010), pg. 58. http://www.ohchr.org/Documents/Publications/Disabilities_training_17EN.pdf .

25 United Nations General Assembly, Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/64/272 (Aug. 10, 2009).

26 Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, A/HRC/22/53 (Feb 2013). http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53_English.pdf .

28 Shakespeare T, Lezzoni LI, and Groce NE, “Disability and the training of health professionals,” The Lancet 374, no. 9704 (Nov. 28, 2009).

29 Ediciones CINCA, Guide to gender mainstreaming in public disability policies (Feb 2012): 246. http://www.oear.or.at/inter-national/europaeische-union/europaeisches-und-internationales-recht/GuidetoGenderMainstreaminginPublicDisabilityPolicies.pdf#page=233 .

30 World Health Organization, Disability and health, Fact Sheet (Nov. 2012). http://www.who.int/mediacentre/factsheets/fs352/en/index.html ; World Health Organization, World Report on Disability (2011). http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf .

31 Open Society Foundations, Sterilization of Women and Girls: A Briefing Paper (2011). http://www.opensocietyfoundations.org/sites/default/files/sterilization-women-disabilities-20111101.pdf ; World Health Organization, Promoting sexual and reproductive health for persons with disabilities: WHO/UNFPA Guidance Note (2009). http://whqlibdoc.who.int/publications/2009/9789241598682_eng.pdf .

32 Center for Reproductive Rights, Reproductive Rights and Women with Disabilities (2002). http://www.handicap-international.fr/bibliographie-handicap/4PolitiqueHandicap/groupes_particuliers/Femmes_Genre/reproductive_rights.pdf .

33 Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, A/HRC/22/53 (Feb 2013). http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53_English.pdf .

34 International Federation of Gynecology and Obstetrics, Female Contraceptive Sterilization (June 2011). http://www.wunrn.com/news/2011/06_11/06_27/062711_female.htm .

35 World Health Organization, Disability and health (June 2011). http://www.who.int/mediacentre/factsheets/fs352/en/index.html .

36 Shakespeare T, Lezzoni LI, and Groce NE, “Disability and the training of health professionals,” The Lancet 374, no. 9704 (Nov. 28, 2009).

38 World Health Organization, World Report on Disability (2011). http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf .

40 Shakespeare T, Lezzoni LI, and Groce NE, “Disability and the training of health professionals,” The Lancet 374, no. 9704 (Nov. 28, 2009).

41 UN Nations Committee on Economic, Social, and Cultural Rights, General Comment No. 14: The Right to the Highest Attainable Standard of Health, E/C.12/2000/4 (Aug. 11, 2000). http://www2.ohchr.org/english/bodies/cescr/comments.htm .

42 Tomlinson et al, “Research Priorities for health of people with disabilities: an expert opinion exercise,” The Lancet 374 (Nov. 28, 2009).

43 UN Nations Committee on Economic, Social, and Cultural Rights, General Comment No. 14: The Right to the Highest Attainable Standard of Health, E/C.12/2000/4 (Aug. 11, 2000). http://www2.ohchr.org/english/bodies/cescr/comments.htm .

44 World Health Organization, “Social determinants of health: Key concepts.” http://www.who.int/social_determinants/thecommission/finalreport/key_concepts/en/index.html .

45 Marmot M, “Social determinants of health inequities,” The Lancet 365 (2005): 1099–104. http://www.who.int/social_determinants/strategy/Marmot-Social%20determinants%20of%20health%20inqualities.pdf .

46 Wilkinson R and l Marmot M, Social determinants of health: the solid facts (WHO Europe, 2003). http://www.euro.who.int/__data/assets/pdf_file/0005/98438/e81384.pdf .

47 Shakespeare T, Lezzoni LI, and Groce NE, “Disability and the training of health professionals,” The Lancet 374, no. 9704 (Nov. 28, 2009).

48 United Nations Economic and Social Council, Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, E/CN.4/2005/51 (Feb. 11, 2005).

49 Stein MA, “Health care and the UN Disability Rights Convention,” The Lancet, 374 (Nov. 28, 2009).

50 Shakespeare T, Lezzoni LI, and Groce NE, “Disability and the training of health professionals,” The Lancet 374, no. 9704 (Nov. 28, 2009).

51 World Health Organization, World Report on Disability (2011). http://whqlibdoc.who.int/publications/2011/9789240685215_eng.pdf .

53 United Nations Human Rights Council, Report of the Office of the United Nations High Commissioner for Human Rights: Thematic study on the work and employment of persons with disabilities, A/HRC/22/25 (Dec. 17, 2012). http://www.ohchr.org/EN/Issues/Disability/Pages/UNStudiesAndReports.aspx .

54 United Nations General Assembly, Convention on the Rights of Persons with Disabilities, A/RES/61/106, Art. 27 (2006). http://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx .

55 United Nations Human Rights Council, Report of the Office of the United Nations High Commissioner for Human Rights: Thematic study on the work and employment of persons with disabilities, A/HRC/22/25 (Dec. 17, 2012). http://www.ohchr.org/EN/Issues/Disability/Pages/UNStudiesAndReports.aspx .

See also, O’Reilly A, The Right to decent work of persons with disabilities (International Labour Organization, Nov. 30, 2007). http://www.ilo.org/wcmsp5/groups/public/—dgreports/—dcomm/—publ/documents/publication/wcms_091349.pdf .

56 United Nations General Assembly, Convention on the Rights of Persons with Disabilities, A/RES/61/106, Art. 16 (2006). http://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx .

57 United Nations General Assembly, Note by the Secretary- General on Torture and other cruel, inhuman or degrading treatment or punishment, A/63/175 (July 28, 2008).

58 Human Rights Watch, US: Students with Disabilities Face Corporal Punishment at Higher Rates: ACLU and Human Rights Watch Seek Ban on Physical Discipline at School (Aug. 10, 2009). http://www.hrw.org/news/2009/08/07/us-students-disabilities-face-corporal-punishment-higher-rates .

59 United Nations Population Fund, Emerging Issues: Sexual and Reproductive Health of Persons with Disabilities. http://www.unfpa.org/upload/lib_pub_file/741_filename_UNFPA_DisFact_web_sp-1.pdf .

60 Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, A/HRC/22/53 (Feb 2013). http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53_English.pdf .

61 Guterman L, Top UN Expert on Torture Demands an End to Abuse in Health Care (Open Society Foundations, March 2013). http://www.opensocietyfoundations.org/voices/states-must-end-abuses-health-care-demands-top-un-expert-torture .

62 Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, A/HRC/22/53 (Feb 2013). http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53_English.pdf .

63 United Nations General Assembly, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Manfred Nowak, A/63/175 (July 28, 2008).

65 United Nations General Assembly, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Manfred Nowak, A/63/175 (July 28, 2008); Human Rights Watch, Like a Death Sentence: Abuses Against People with Mental Disabilities in Ghana (Oct. 2012). http://www.hrw.org/reports/2012/10/02/death-sentence-0 ; Tavanier YB, Institutions Remain Dumping Grounds for Forgotten People, Newsletter (European Coalition for Community Living, 2009). http://www.opensocietyfoundations.org/publications/institutions-remain-dumping-grounds-forgotten-people .

66 United Nations General Assembly, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Manfred Nowak, A/63/175 (July 28, 2008).

67 Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, A/HRC/22/53 (Feb 2013). http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53_English.pdf .

71 Parker C and Clements L, The European Union and the Right to Community Living: Structural Funds and the European Union’s Obligations under the Convention on the Rights of Persons with Disabilities (Open Society Foundations, 2012). http://www.opensocietyfoundations.org/sites/default/files/europe-community-living-20120507.pdf ; European Coalition for Community Living, Wasted Time, Wasted Money, Wasted Lives—A Wasted Opportunity?, Focus Report (2010): 78. http://community-living.info/documents/ECCL-StructuralFundsReport-final-WEB.pdf ; Inclusion International, Inclusion International Campaign on Article 19 – Living in the Community. http://www.inclusion-international.org/home/inclusion-international-campaign-on-article-19/ .

72 United Nations General Assembly, Report of the independent expert for the United Nations study on violence against children,A/61/299 (Aug. 29, 2006): 16. http://www.unicef.org/violencestudy/reports/SG_violencestudy_en.pdf .

73 Mansell J et al, Deinstitutionalisation and community living – outcomes and costs: report of a European Study, Volume 2: Main Report (Canterbury: Tizard Centre, University of Kent, 2007), (the DECLOC report). http://www.kent.ac.uk/tizard/research/DECL_network/documents/DECLOC_Volume_1_Exec_Summary_final.pdf .

75 Parker C, A Community for All: Implementing Article 19 – A Guide for Monitoring the Implementation of Article 19 of the Convention on the Rights of Disabilities (Open Society Foundations, Dec 2011). http://www.opensocietyfoundations.org/sites/default/files/community-for-all-guide-20111202.pdf ; Hammarberg T, The Right of People with Disabilities to Live Independently and be Included in the Community, CommDH/Issue Paper, (Council of Europe, 2012). https://wcd.coe.int/ViewDoc.jsp?id=1917847 .

76 United States Supreme Court, Decision of Olmsted v. LC, 527 US 581 (1999).

77 Freyhoff G et al, eds., Included in Society – Results and Recommendations of the European Research Initiative on Community-based Residential Alternatives for Disabled People (European Commission, 2004). http://www.community-living.info/contentpics/226/Included_in_Society.pdf .

78 Hammarberg T, The Right of People with Disabilities to Live Independently and be Included in the Community, CommDH/Issue Paper, (Council of Europe, 2012). https://wcd.coe.int/ViewDoc.jsp?id=1917847 .

79 Freyhoff G et al, eds., Included in Society – Results and Recommendations of the European Research Initiative on Community-based Residential Alternatives for Disabled People (European Commission, 2004). http://www.community-living.info/contentpics/226/Included_in_Society.pdf .

80 Hammarberg T, The Right of People with Disabilities to Live Independently and be Included in the Community, CommDH/Issue Paper, (Council of Europe, 2012): 4. https://wcd.coe.int/ViewDoc.jsp?id=1917847 .

82 Amnesty International, Bulgaria: Far from the Eyes of Society: Systematic Discrimination against People with Mental Disabilities (Oct. 2002). http://www.amnesty.org/en/library/info/EUR15/005/2002 ; Amnesty International and Mental Disability Advocacy Center, Cage Beds: Inhuman and Degrading Treatment in Four Accession Countries (2003). http://www.mdac.info/en/resources/cage-beds-inhuman-and-degrading-treatment-or-punishment-four-eu-accession-countries .

83 United Nations General Assembly, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Manfred Nowak, A/63/175 (July 28, 2008).

84 United Nations General Assembly, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, Manfred Nowak, A/63/175 (July 28, 2008).

86 Human Rights Council, Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, A/HRC/22/53 (Feb 2013). http://www.ohchr.org/Documents/HRBodies/HRCouncil/RegularSession/Session22/A.HRC.22.53_English.pdf .

87 Parker C, A Community for All: Implementing Article 19 – A Guide for Monitoring the Implementation of Article 19 of the Convention on the Rights of Disabilities (Open Society Foundations, Dec 2011). http://www.opensocietyfoundations.org/sites/default/files/community-for-all-guide-20111202.pdf ; Hammarberg T, The Right of People with Disabilities to Live Independently and be Included in the Community, CommDH/Issue Paper, (Council of Europe, 2012): 9. https://wcd.coe.int/ViewDoc.jsp?id=1917847 .

88 Parker C, A Community for All: Implementing Article 19 – A Guide for Monitoring the Implementation of Article 19 of the Convention on the Rights of Disabilities (Open Society Foundations, Dec 2011). http://www.opensocietyfoundations.org/sites/default/files/community-for-all-guide-20111202.pdf .

89 Hammarberg T, The Right of People with Disabilities to Live Independently and be Included in the Community, CommDH/Issue Paper, (Council of Europe, 2012): 8. https://wcd.coe.int/ViewDoc.jsp?id=1917847 .

90 Hammarberg T, The Right of People with Disabilities to Live Independently and be Included in the Community, CommDH/Issue Paper, (Council of Europe, 2012). https://wcd.coe.int/ViewDoc.jsp?id=1917847 .

94 Parker C, A Community for All: Implementing Article 19 – A Guide for Monitoring the Implementation of Article 19 of the Convention on the Rights of Disabilities (Open Society Foundations, Dec 2011). http://www.opensocietyfoundations.org/sites/default/files/community-for-all-guide-20111202.pdf .

95 European Expert Group on the Transition from Institutional to Community-based Care, Common European Guidelines on the Transition from Institutional to Community Based Care: Guidance on implementing and supporting a sustained transition from institutional care to family-based and community-based alternatives for children, persons with disabilities, persons with mental health problems and older persons in Europe (Nov. 2012). http://deinstitutionalisationguide.eu/wp-content/uploads/2012/12/2012-12-07-Guidelines-11-123-2012-FINAL-WEB-VERSION.pdf . See also, European Expert Group on the Transition from Institutional to Community-based Care, Toolkit on the Use of European Union Funds for the Transition from Institutional to Community-based Care (Nov. 2012). http://deinstitutionalisationguide.eu/ .

• Share full article

Advertisement

Supported by

What the A.D.A. Means to Me

We asked the disability rights activists Judy Heumann, Alice Wong and Haben Girma to reflect on the 30th anniversary of the Americans With Disabilities Act. They said the work of a civil rights activist is never done.

We Should Celebrate. But There Is Still Work to Do.

Listen to this essay.

This essay is based on an interview of Judy Heumann by Kaitlyn Wells. Ms. Heumann is the co-author of “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist,” with Kristen Joiner , and is featured in the award-winning Netflix documentary “ Crip Camp: A Disability Revolution.”

I was 18 months old when my parents learned I had polio. It was 1949, and things that were typical for children were not so typical for me. I was denied the right to go to school because the staff did not know how to accommodate a student who could not walk. Instead, I received just two-and-a-half hours of home instruction each week. People like me who did not fit into a neat little box had no laws to protect them. We were not advancing in our education and no one had expectations for our futures.

This discrimination continued when I pursued my teaching career. Though I passed all my exams, I was denied a teaching license in 1970 because New York City’s Board of Education thought I could not safely evacuate my students in case of a fire. There was no one who looked like me — who used a wheelchair — fighting for this right. I filed a lawsuit and I won .

I began to see other disabled people fighting for inclusion, and I found empowerment in our collaboration. On April 5, 1977, more than a hundred of us occupied a San Francisco federal building for what became known as the 504 Sit-in. We had fought with the Carter administration to sign regulations implementing Section 504 of the Rehabilitation Act of 1973, which prohibited programs that received federal funding from discriminating against disabled people, but after years of asking, 504 still had not been signed. We occupied the building for almost a month until our demands were met. Section 504 was key because it laid the foundation for the Americans With Disabilities Act.

The A.D.A. helped open building doors, allowed us to earn an education and made it illegal to discriminate against a qualified person for employment. We should celebrate the strides we have made. But there is still work to do. The way society thinks about disability needs to evolve, as too many people view disability as something to loathe or fear. By changing this mentality, by recognizing how disabled people enrich our communities, we can all be empowered to make sure disabled people are included.

Real Culture Change Takes Time

This essay is based on an interview of Alice Wong by Kaitlyn Wells. Ms. Wong is the founder of the Disability Visibility Project and the editor of “Disability Visibility: First-Person Stories from the Twenty-First Century.”

Yes, things are better with the A.D.A. We have elevators, ramps and closed captioning. But the A.D.A. is not a magic wand. The A.D.A. can only do so much to correct inequalities in a society that is uncomfortable with disability.

There is a lot of hostility rooted in our culture’s very narrow idea of who is disabled. Many people are inherently suspicious if someone does not look like them or is not “normal,” and those biases are compounded against disabled people of color. We should not have to assimilate to a standard of “normal” to gain acceptance. And so it is up to us to dismantle these systems and expand what it means to be disabled: We are a range in diversity, not a monolithic group.

Disability spans cultures and races, is both visible and invisible. Black and brown disabled people still receive pushback by white disabled people who do not want to acknowledge that racism and other forms of oppression exist, but these incidents of racism and microaggressions wear us down.

The A.D.A. is important, but culture change, real culture change takes much longer to achieve. Anyone can create this change by speaking up in everyday situations, such as considering someone’s dietary restrictions at a dinner party, asking for an accessible venue at a company event and or simply believing that those who request accommodations need them. We all have a shared responsibility to consider others, regardless of whether they reveal their disability. Speak up not only for your own disability but for invisible disabilities, and disabled people of color as well. Be more deliberate. We are here, and we will always be here.

Using the Law to Pursue Justice

This essay was written by Haben Girma, a lawyer, public speaker and author of “ Haben: The Deafblind Woman Who Conquered Harvard Law .”

Our guest speaker, blind herself, shared three words for dismantling discrimination. “Threaten to sue.”

I laughed nervously with the other blind teens. Then her message sank in: The A.D.A’s promise of equality depends on us. Learning about the A.D.A. ignited a spark, powering my flight through high school, college and finally law school.

During my first year as a lawyer, blind readers told me about barriers on Scribd , a large digital library of e-books, audiobooks and documents. My throat clenched remembering all the times I longed to touch a story in Braille. Blind people navigate websites and apps through screen readers, software converting visual information to speech or physical dots popping up on a connected Braille computer. Tech companies following accessibility principles can design engaging apps for both disabled and nondisabled customers. Companies ignoring the market of more than one billion disabled people risk facing litigation.

The A.D.A. empowered me to pursue justice. My colleagues and I sent Scribd a letter describing the issues and inviting them to work with us on a solution. We received no response. So on July 29, 2014, my 26th birthday, we sued them.

Scribd argued the A.D.A. did not extend to virtual places, but I vehemently disagreed in our briefs to the court. In National Federation of the Blind et al v. Scribd, Inc., the U.S. District Court for the District of Vermont held that the A.D.A. does in fact apply to online businesses. Scribd soon agreed to collaborate with the National Federation of the Blind on making its library accessible.

Now I am the one urging disabled teens to study the A.D.A. and demand inclusion. These days I advocate change through writing and consulting, and speaking to schools, companies and government agencies about my memoir, “ Haben: The Deafblind Woman Who Conquered Harvard Law .” The collective efforts of disability activists launched the A.D.A., and we intend to continue steering toward a barrier-free future.

From Compliance to Initiative: The Next Stage in Disability Inclusion

• Daniel F. Goldstein
• Michael Ashley Stein

Editor’s Note: This piece is a part of our series celebrating the thirty-year anniversary of the Americans with Disabilities Act (ADA).

The Americans with Disabilities Act (ADA) has been transformational in many ways, especially in the way that people with disabilities can access public spaces and thereby participate in their communities. Nevertheless, a look at the ADA’s impact on its thirtieth birthday reveals much that has not changed. Notably, the needle on unemployment of employable persons with disabilities has scarcely budged. In other areas things are getting worse. WebAim’s survey of the home pages of the one million most popular websites, for example, revealed barriers on 98.1% in 2020, an increased incidence rate from 97.8% in 2019; likewise, the average number of accessibility errors per home page rose to 60.9% in 2020 from 58.8% in 2019.

The time has therefore come to re-assess how to innovatively advance disability rights.  Historically, strategic litigation has been the tool of first resort of cause lawyers on behalf of marginalized groups in the U.S. including, at times, people with disabilities .  Litigation is an important tool, but one that is expensive, time-consuming, and non-systemic.  Because defendants settle the strongest cases, it is hard to build a body of good law , and, for the most part, employment disability rights cases are dependent on the facts around reasonable accommodation that are idiosyncratic and provide relief one plaintiff at a time .  Moreover, all too often, entities do not want to comply when the law is clear or even when it is economically in their own self-interests . Part of the problem lies with the stubborn , prevailing cultural perception of “disabled” as “less able,” and a view of accommodation as an imposed burden , rather than a positive opportunity to include those with disabilities. Consequently, the ADA remains a broad mandate that society has not yet fully embraced.

It is time to consider how to move from compliance as an imposition toward desired inclusion and belonging—from a semi-effective external enforcement stick to a more effective self-motivated carrot.  From that perspective, current laws are not much help.  The ADA, the Rehabilitation Act (Rehab Act), and their accompanying respective regulations elaborate on what covered entities should not do—discriminate, create barriers, and fail to make reasonable accommodations.  But apart from the notable exception of the ADA Architectural Guidelines (ADAAG) and the Rehab Act’s 508 regulations , governing the accessibility of electronic and information technology applicable to federal governmental entities, there is little in the way of guidance as to the affirmative steps that organizations could take to be inclusive and accessible to customers, employees, and job applicants with disabilities.  Not surprisingly, so far the record on the effectiveness of affirmative standards, beyond ADAAG, is not encouraging.  Compliance by the federal government with 508 , as well as by states that have 508 equivalents, was and is rare.  Take, for example, the extensive use of Google Docs before it was accessible ; further, use of inaccessible Microsoft SharePoint by governmental entities at all levels was and is endemic. 

So, where is the all-in-one answer to what an entity needs to do to be fully inclusive of people with disabilities, be they customers, employees or job applicants?  If an entity wants a comprehensive answer as to how to build an energy-efficient building, an architect advising a corporate CEO can point to the LEED certification standard for the steps to take.  But there is no disability equivalent—a comprehensive, cross-disability set of affirmative steps that a corporate or other entity can take to ensure that the organization is fully welcoming and accessible to persons with disabilities. 

That there would be corporate interest in such a set of standards is not naïve.  Increasingly, as corporations become more knowledgeable about demographics and customer bases, the importance of expanding one’s customer base is clear.  One marker: Wal-Mart’s website was one of the first retail websites to be non-visually accessible, and that, without any litigation or, so far as these authors know, threat of litigation.  So, too, some corporations are slowly awakening to the benefits of including people with disabilities as part of employee diversity. 

The answers to how to be inclusive are not necessarily self-evident to a corporate executive or to a risk manager.  What does a disability-inclusive emergency planning and disaster resilience program for a corporation need to include?  How, exactly, do you incorporate accessibility requirements into software design standards?  How do you ensure that those who sell you employee-facing software are selling you accessible software?  Does the new AI program being used by human resources to screen job applicants discriminate against applicants with disabilities?

Such a set of standards must also reflect what changes to corporate infrastructure will ensure the sustainability of the effort—at what level is the leadership? What goes into employment reviews about compliance with accessibility efforts?  How does the reporting chain flow to ensure that the right people know what is and is not happening?  In other words, where is the accountability that goes beyond the rhetoric?

Some companies have come together through an entity called Disability:IN to outline some steps that corporations can take and subsequently score themselves.  While those standards cover a number of areas, they are not comprehensive. As a result, a company can, for example, market inaccessible software while scoring 100 on the standards.  While the Disability:IN standards have produced some notable progress, such incidents of perfect scoring and imperfect results have opened up the system to significant critique within the disability community.

The source of a LEED-equivalent standard for disability inclusion should, of course, come from the disability community itself. There is no more authentic source for what a company needs to do for people with disabilities than people with disabilities.  And compliance scoring needs to be external and verifiable.  To this end, the National Federation of the Blind , the National Association of the Deaf , Association of Late-Deafened Adults , The Arc , the Autistic Self-Advocacy Network , National Council on Independent Living , the Bazelon Center for Mental Health Law , the World Institute on Disability , the Civil Rights Education and Enforcement Center and advocates for persons with allergies have all contributed to the ongoing development of just such a set of standards for corporations.  (It is hoped that ones for educational and governmental entities will follow). 

But while disability advocates know what is needed, the input of corporate professionals who know how corporations work into the fashioning of such a benchmarking tool is likewise necessary.  Thus, the standards that are being generated have been reviewed and commented on at length by digital accessibility consultants , built environment consultants , and human resource professionals who have made constructive suggestions on such matters as broadening training and how to address steps in web and app design.

After one of the authors proposed the development of such standards in a keynote speech at the 2017 CSUN Accessible Technology conference , the International Association of Accessibility Professionals agreed to host the standards.  The IAAP, a division of the Global Initiative for Inclusive ICTs (G3ict), is a not-for-profit that certifies digital accessibility professionals and is now undertaking to also certify built environment professionals.  It intends to also develop a curriculum, training , and certification for disability inclusive emergency and disaster resilience planning.  Among the important actions taken by the IAAP is the agreement that modifications to the standards, questions such as whether a corporation might earn partial credit, and the frequency with which audits of continued compliance will occur, are decisions that will remain in the hands of the disability rights groups named above. 

At present, the standards, under the sobriquet Smart Business 4 All (SB4All) , are under review by two significant corporations who are assessing the feasibility of being the beta testers and identifying areas that are ambiguous or will pose major challenges.  The standards in this benchmarking tool, even if adopted by only a small number of large corporations , could have a large ripple effect.  Consider, for example, the requirement in SB4All that employee-facing software must be accessible on renewal of the software license.  Right now, the ADA and other statutes do not require   that software developers make their software accessible.  However, if sellers of accounting, human resources, inventory, and other business software are facing a demand for accessibility from a number of significant corporate customers, accessibility will become a market requirement and a sales point. 

In the civil rights movement, we have seen over and over the complex interplay between cultural perception and law, whether the subject is race, gender, or sexual orientation.  Success for disability rights will require more than litigation.  The authors believe SB4All is a promising approach, but only as part of a multi-prong effort to change the meaning we ascribe to disability and the societal value of including individuals with disabilities.  Thirty – five years after the enactment of the ADA, we need both new approaches and renewed vigor.

• Disability Law

More from the Blog

Politics of belonging: anti-black racism, xenophobia, and disinformation.

• Karla McKanders

Preempting Toxic Torts: Third Circuit Opens Split on Cancer Warnings in  Schaffner v. Monsanto

• Hannah Frater

Defending Consent Decrees in the Wake of Horne v. Flores

• Alaizah Koorji

About the Journal

Disability Studies Quarterly ( DSQ ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)

Make a Submission

Dsq social media.

Tweets by @DSQJournal

DSQ Instagram

Volume 1 through Volume 20, no. 3 of Disability Studies Quarterly is archived on the Knowledge Bank site ; Volume 20, no. 4 through the present can be found on this site under Archives .

Beginning with Volume 36, Issue No. 4 (2016), Disability Studies Quarterly is published under a Creative Commons Attribution-NonCommercial-NoDerivatives license unless otherwise indicated.

Disability Studies Quarterly is published by The Ohio State University Libraries in partnership with the Society for Disability Studies .

If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact [email protected] .

ISSN: 2159-8371 (Online); 1041-5718 (Print)