Category: Disability Rights

Disability Rights, Employment, and Housing in a Cross-Cultural Perspective

three men unpacking soda for distribution
“Men at Work” by Andreas Wulff, Creative Commons

The ability to be rewarded for making meaningful contributions to society and to choose our own private residence are two facets of life many of us often take for granted.  However, many individuals with a form of disability often encounter barriers during their journey locating work and housing.  These barriers can arise from social isolation, discriminatory and / or inadequate governmental policies, economic hardship, or simply a lack of awareness of resources designed to aid persons with disabilities to find employment and housing.  These material and immaterial barriers fall under the broad umbrella of ableism, defined here as “the intentional or unintentional discrimination or oppression of individuals with disabilities”.  The following post explores four case studies surrounding the themes of housing and employment and how various cultures have either failed to address these needs or offered innovative solutions to persons with disabilities.  Finally, for the purpose of this blog, disability is defined, in accordance with the Washington Group (2018), as “problems, such as impairment, activity limitation or participation restrictions that include the negative aspects of functioning” in the following six domains: (a) walking; (b) seeing; (c) hearing; (d) cognition; (e) self-care; and (f) communication.  This blog post offers an anthropologically-informed context for to upcoming panel ‘Disability Rights, Employment, and Housing in a Cross-Cultural Perspective’ at the Institute for Human Right’s Symposium on Disability Rights.

Disability Rights & Employment: South Africa

South Africa’s government of apartheid came to power in 1948 and institutionalized a cultural and political zeitgeist of xenophobia, discrimination, and violence towards the Other.  Throughout apartheid’s hold on South Africa, systems of cultural and structural violence were erected both within social life and in bureaucratic policy.  Apartheid is most infamous for its impact on racially-motivated violence; however, other forms of discrimination were enabled by apartheid policy and philosophy as well.  Engelbrecht (2006) notes that education systems institutionalized apartheid policies in curricula development and inclusivity within schools.  This specifically barred children with disabilities from actively participating in the education system, from primary through tertiary levels.  Englebrecht (2006) contends children with disabilities were actively excluded from South African governmentally-controlled education systems.  This means children with disabilities during the apartheid regime did not receive adequate preparation for entering into the workforce, thus placing these individuals at a low ‘tract’ and preventing them from seeking or acquiring meaningful employment.  Englebrecht (2006) emphasizes that discriminatory and / or prejudicial national policies focused on one marginalized population (e.g. apartheid) often seep into the experiences of other marginalized populations as well.  In short, government-sanctioned racist policies immobilized the disability community.  To repress one group is to repress all groups.

The South African Human Rights Commission (SAHRC) was inaugurated in October of 1995, as mandated by the South African Constitution’s Human Rights Commission of 1994.  The SAHRC is charged with monitoring, preventing violations of, and educating the public about human rights within the South African context.  A specific function of the SAHRC is to examine how apartheid-era policies impacted South African civil society and how to eliminate the vestiges of structural violence still propagated by the former apartheid regime.  The SAHRC provides further evidence supporting Engelbrecht’s (2006) theory that the repression of children with disabilities would negatively impact South African workforce.  The SAHRC (2017) summarizes trends of disability employment, demonstrating that workforce equity (equally considering and making efforts to hire marginalized populations, such as the disability community) is nowhere near the South African Department of Labor’s goal of 7% by the year 2030.  In 2017, workplace equity was still under 2%, with 8 in 10 persons with disabilities unable to find employment (SAHRC, 2017).  A variety of reasons are given for this abysmally low number, including: lack of reasonable accommodation, inequality and discrimination, and a persistent inability to obtain a quality education.  The ghost of apartheid, it seems, haunts the disability community within South Africa, preventing a vast majority of persons with disabilities from obtaining education, training, and gainful employment.

The Liffey River, Dublin, Ireland
“Dublin – The Big Snow of 2010 – Along the Liffey” by William Murphy, Creative Commons

Disability Rights & Employment: Ireland

In 2017, the British Conservative government announced plans to cut the Employment and Support Allowance for persons with disabilities who were deemed ‘capable of preparing to return to work’ by 30£ / week (~$40 / week).  The British government implemented this policy as a ‘motivational tool’ for persons with disabilities and as an austerity measure, despite the fact that previous disability allowances (akin to welfare or social security measures in the United States) left 1/3 of allowance recipients struggling to afford food.  However, the ministers of Ireland, taking cue from their outraged constituents, have chosen a different path to empower persons with disabilities to find employment.  Instead of the ‘pull yourself up by the bootstraps’ strategy of British Conservative MPs, Irish Minister for Social Protection Regina Doherty and Minister of State for People with Disabilities Finian McGrath have chosen to listen to persons with disabilities themselves to assess the best way to promote gainful employment within the disability community.  In response to a 2017 policy brief Make Work Pay, Doherty, McGrath, and other policy-makers are distributing questionnaires to adults with disabilities and parents of young children with disabilities to assess the employment needs of the disability community (Clougherty, 2017).  This approach to governance, one defined by inclusivity and direct participation of the disability community, shows promise in exploring the complicated relationship between disability and employment.

Of particular importance in the employment-disability nexus is accounting for an individual’s preference for work and her or his form of disability.  The Irish ministers understand that low-functioning persons with disabilities will, for the entirety of their life, be simply unable to work.  These individuals require assistance from the government thereby ensuring these persons are included in society and are able to participate in decisions regarding their lives and livelihoods.  On the other hand, some individuals are temporarily disabled and do not require the same social security from governments.  By asking for input from persons with disabilities themselves, the Irish policy-makers are better equipped to make educated, inclusive, and effective policies and programs aimed at insuring equitable and equal employment within the disability community.

The Al-Saraya al-Hamra Fortress in Tripoli, Libya
“Al-Saraya al-Hamra Fortress, Tripoli” by David Stanley, Creative Commons

Disability Rights & Housing: Libya

The State of Libya, located at the Northern-most tip of Africa and bordered by the Mediterranean Sea, is in the midst of rebuilding civil society following the catastrophic Libyan Civil War of 2011.  For over forty years, Muammar Gaddafi ruled over Libya, attempting to introduce a socialist regime and command economy to the Libyan State.  During his reign, Gaddafi allegedly sought to implement a political philosophy of jamahiriya (جماهيرية‎), meaning “state of the masses” in Arabic – akin to ‘direct democracy’.  Through this system, Gaddafi created the national General People’s Congress, whose directives (including any form of a Libyan Constitution) could be superseded by the Basic People’s Congress, municipally-led executive and legislative bodies.  Hypothetically, this system placed most political power at the local level; however, Gaddafi’s actual dictatorial rule inverted the political equation.  In the past half century, this political system (again, on paper) aimed to enshrine the rights of persons with disabilities through the passage of the 1981 “Law on Disabled People”, arranging for “government provision of housing, home care, education, prosthetic limbs and rehabilitation for people with disability in Libya” (Hamed el-Sahly & Cusick, 2016, p. 12).  In political practice, Libyan persons with disabilities suffered major human rights violations, including lack of housing and home care, due to insufficient mechanisms of care and cultural taboos.

Although political and economic recovery may well be on the horizon for post-conflict Libya, cultural barriers prevent many Libyans with disabilities from securing independent and safe housing.  In a comparative study, many Libyans express unfavorable attitudes towards persons with disabilities along three dimensions: (1) lower ratings of willingness to empower the disability community; (2) higher ratings of exclusion; and (3) lower ratings of similarity between disabled and non-disabled people (Benomir, Nicholson & Beail, 2016).  Most pertinent to issues related to housing, Libyan participants scored high on the ‘need to shelter’ persons with disabilities – meaning intentionally secluding these individuals from broader society for fear of communal judgement and the social stigma attached to disability.  Furthermore, efforts to facilitate the transition from being ‘sheltered’ (living with a family member) to an autonomous home life is seen as a problem ‘for and by’ the disability community – i.e., it is the responsibility of the disability community alone to solve social issues related to their situation in life (Cusick & Hamed el-Sahly, 2018).  This demonstrates that governmental policies intending to enshrine disability rights are insufficient – societies themselves must be willing to tackle these issues head on.

A Hopi House
“Grand Canyon Hopi House 0073” by Grand Canyon National Park, Creative Commons

Disability Rights & Housing: Native Americans

Persons with disabilities with another form of marginalized identity (e.g. members of an indigenous group) are placed at a heightened risk for social isolation / exclusion, for physical and mental health concerns, and having disability-related needs go unmet (US Department of Health & Human Services, 2017).  Within American Indian / Alaska Native (AIAN) communities, this translates specifically into housing issues, as AIAN reservations already suffer from a lack of resources and infrastructural investment to provide for non-disabled AIAN individuals (US Department of Health & Human Services, 2017).  An estimated 21 – 69% of homes on reservations are overcrowded and have serious physical deficiencies compared with 5.9% of non-reservation US homes nationally (US National Council on Disability, 2003).  To address these intersecting concerns, the AIAN community, in tandem with the US government, have prepared and started implementing policy prescriptions to provide affordable, safe, and dignified housing to AIAN with disabilities.

Of primary concern in planning homes for persons with disabilities is utilizing principles of universal design – “guidelines for housing construction that would create a livable, marketable environment for everyone regardless of ability, age, or size” (US National Council on Disability, 2003, p. 94).  Currently, the American Indian Disability Technical Assistance Center provides assessments of universal design within reservations and makes design prescriptions if the home in question is not fully accessible.  Implementation of these prescriptions may fall to the American Indian Disability Legislation Project (AIDLP), a culturally-informed taskforce mandated to draft and pass legislation standardizing disability-related care (including autonomous and accessible housing) on Indian reservations (US Department of Health & Human Services, 2017).  The AIDLP, in addition to ensuring reservations adhere to the Americans with Disabilities Act, acts as a cultural liaison between the disability community and AIAN community to ensure disability concerns are handled in a culturally-appropriate manner.  Finally, the AIDLP and other AIAN-affiliated, disability-related advocacy groups ground their research and implementation efforts by tackling both material (e.g. physical accessibility) and immaterial (e.g. cultural stigma) barriers (US Department of Health & Human Services, 2017).

Towards a Global Culture of Disability Empowerment

The preceding case studies illustrate that disability rights, especially related to employment and housing, are high complicated issues.  Historical events, such as apartheid and civil war, interact with governmental policies, such as austerity measures and indigenous sovereignty.  Underlying each of these examples is the ‘culture’ surrounding disability – how peoples across the world value or stigmatize the experiences and perspectives of the disability community.  In some cases, such as South Africa, systems of discrimination have erected structural barriers holding back people with disabilities, even though disability-related stigma may have lost its potency.  In other cases, such as American Indian / Alaska Native communities, an additional marginalized identity may facilitate an even greater emphasis on seeking justice and equity for persons with disabilities.  As local, national, and global disability movements aim to eliminate social exclusion and promote equality in life and livelihood, the myriad cultures of disability must be unpacked and explained.  This post argues that moving towards a global cultural of disability empowerment is indeed possible.  Once this culture of empowerment has been adopted, disability-related concerns, such as employment and housing, will be addressed and rectified across the globe.

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.  And don’t forget to tag your Symposium-related posts with our event hashtag: #DisabilityRightsBHM

References

Benomis, A. M., Nicolson, R. I. & Beail, N. (2016). Attitudes towards people with intellectual disability in the UK and Libya: A cross-cultural comparison. Research in Developmental Disabilities, 2016, 1-9.

Clougherty, T. (2017). Make Work Pay: A New Agenda for Fairer Taxes. Cork, Ireland: Center for Policy Studies.

Cusick, A. & Hamed el-Sahly, R. M. (2018). People with disability are a medicalized minority: Findings of a scoping review. Scandinavian Journal of Disability Research, 20(1), 182-196.

Engelbrecht, P. (2006). The implementation of inclusive education in South Africa after ten years of democracy. European Journal of Psychology of Education, 21(3), 253-264.

Hamed el-Sahly, R. M. & Cusick, A. (2016). Rehabilitation services in Benghazi, Libya: An organizational case study. Middle East Journal of Family Medicine, 14(9), 11-18.

South African Human Rights Commission (2017). Research Brief of Disability and Equality in South Africa. Braamfontein, South Africa: South African Human Rights Commission.

US Department of Health & Human Services (2017). Emerging LTSS Issues in Indian Country: Disability and Housing. Spokane, WA: Kauffman & Associates, Incorporated.

US National Council on Disability (2003). Understanding Disabilities in American Indian & Alaska Native Communities. Washington, DC: National Council on Disability.

Washington Group (2018, December 4). Statement of rationale for the Washington Group general measure on disability. Retrieved from http://www.washingtongroup-disability.com/wp-content/uploads/2016/01/Rationale_WG_Short-1.pdf

Disability History: Overlooked but Not Forgotten

*Author’s note: I am aware of discourse on person-first language (people with disabilities) versus identity-first language (disabled people). I identify as disabled (chronic illness is a form of disability) and personally prefer identity-first over person-first, but I will use both forms in this blog as to avoid repetition.

“Classroom scene with teacher Kate Hobart showing students how to use mirrors to assist speech-learning.” 1893, Horace Mann School for the Deaf. Source: Boston City Archives, Creative Commons.

The history of disability is asymmetrical. We know that history is always written by those with the power to wield the pen, and the powerful have always trodden on disabled people*. This is why history has most commonly staged people with disabilities as passive subjects — voiceless patients, preserved in history as miserable recipients of medical treatments, cures, and operations. Before the acknowledgement of dis/ability as a socially constructed identity much like gender or race, the dominant framework was the medical model. Impairments were seen from a medical standpoint as afflictions to remove, and “disability history” is full of famed doctors who found apparent solutions to bodily deviance. [Read more about the difference in the medical and social models in this post by graduate student and IHR intern Shane Burns!]

Disability scholars, in the past few decades, have begun to reclaim disabled narratives and frame them in ways that empower and enrich the social matrix of ability.

Like African American revisionists, we strive to reevaluate history with an additional, more critical lens. Before critical race scholars/theorists reasserted historic perspectives to reveal deep-seated racism (alongside the influential Civil Rights and Black Power movements), American society accepted racial discrimination as a fact of life. Ableism can be subverted in a similar way. Modern principles of universal justice and equity equip us to destroy structural injustice wherever it lurks within the depths of unchallenged social praxis. Additionally, revisionism – in disability history, Black history, LGBTQ history, etc. – grants the option to see historically oppressed groups as agents of change rather than sufferers of fate. Obviously, the lingering trauma experienced by oppressed identities cannot be ignored, and it would be detrimental to assume that the same forces of oppression no longer exist. But viewing disabled people as individuals with power, richness, and complexity is an empowering perspective.

 

Disability activist Stella Young chats with Paralympic medalist Ann Cody. Both women use wheelchairs.
“Stella Young with Ann Cody.” Source: Exchanges Photos, Creative Commons. [Watch Stella Young’s phenomenal TED talk, “I’m not your inspiration, thank you very much,” here.]
In that spirit, this blog will give a brief overview of the disability rights movement, and will highlight some overlooked historical perspectives of persons with disabilities. I will condense the obligatory section detailing the terrible harms suffered by people with disabilities over the centuries : subjugation, abuse, isolation, eugenic extermination, etc. Disabled people have suffered in a wide range of circumstances and continue to suffer today from a toxic mixture of economic, social, political, and cultural barriers. It’s exhausting and demoralizing to read about these things as a disabled person. It also encourages unneeded pity from non-disabled people. Though pity may come from good intentions, it only reinforces dehumanizing attitudes. These attitudes replicate through supposedly innocent interactions like “oh, you poor thing,” and “if I were you, I’d just want to die! I can’t believe you do it!” These sentiments are fairly common reactions from non-disabled people, and they are often said with emphatic sympathy. Yet these are the same attitudes that have stolen agency from disabled people, used their life struggles as perverted inspiration, and used as an excuse to suppress, subject, torture, and extinguish people with disabilities.

Ableism, like many other “isms,” is bound and sustained through micro-level interactions rooted in unconscious yet detrimental assumptions. If you are a non-disabled person, I urge you to reflect before you react to disabled narratives, and consider how your assumptions have been informed by bias. Be sure to actively listen with compassion, react with empathy instead of pity, and always practice validation. It’s okay to have questions, and it’s okay to feel uncomfortable. Sit with your discomfort. Explore it. Decide to challenge it, and you may find yourself with a new perspective.

A group of disabled protesters are staged outside of a healthcare clinic, protesting welfare cuts that have harmed many disabled people in the UK.
“Disabled people protest outside St Mary’s House, Norwich.” Source: Roger Blackwell, Creative Commons.

The Disability Rights Movement

“People with disabilities have been socially dispersed and have lacked both a common identity and the economic and political resources to coalesce into an active and effective movement capable of political action. A rights-oriented consciousness and an adequate organizational apparatus have both been essential to creating the disability rights movement.” – Scotch (1989, p. 4).

In other words, the disability rights movement required a) the collective understanding that disabled people as a group deserved rights and b) the resources to organize and motivate that group effectively.

This effort began to gather momentum in the 1960s, inspired by the grassroots activism of the time (another significant nod to the Civil Rights & Black Power movements). The early disability rights movement also benefited from community programs for disabled people, such as disabled student programs on college campuses. These programs were meant to provide services for people with disabilities, but they also inadvertently connected disabled people.

This was a radical change in society. Most disabled people were physically and socially isolated from one another prior to this movement — individuals with diverse impairments didn’t recognize each other under a “disabled” identity. This disconnect is caused by compounding issues. For instance, an epileptic person has a different set of struggles than a Deaf person or a wheelchair user. In other words, different impairments look and function differently, and it can be hard to conceptualize shared identity between such diverse experiences. Community spaces are often inaccessible, while home environments are isolating. In these situations (especially when surrounded by non-disabled caretakers/family) personal autonomy and dignity can be limited. Without opportunities to share narratives among peers, disabled people had no way of knowing the vast network who shared their experiences. But when this network began to develop, it became apparent that many of us feel the same pain. Together, we could investigate our experiences and find that they’re all rooted in the same institutional structures, harmful biases, and violent enforcement of so-called normalcy.

Three people in wheelchairs face each other while talking.
“Creative Accessibility Mapping Tour.” Source: Andi Weiland / SOZIALHELDEN, Creative Commons.

The first major assertion of collective disabled power came in the early 1970’s. Union of Physically Impaired Against Segregation (UPIAS) was a British group whose radical publications – including Fundamental Principles of Disability (1975) — formed the ideological foundations from which the social model of disability emerged in the early eighties. Penned by Mike Oliver, the social model pointed out that having a disability is not an impairment in itself, but that impairments are created by an inaccessible society. The impairment of poor vision would be disabling if glasses weren’t widely accessible. This shifted the entire paradigm of ability. Everyone experiences limitation and impairment, ability exists on a spectrum, and the social mechanisms that separate “abled” from “disabled” can be torn down. The suffering experienced by disabled people isn’t inherent and should not be accepted. Disabled people can celebrate their own existence, and can demand a better existence for themselves and their peers. Judy Heumann says it much better than I can:

“As long as you believe that your life is a tragedy, you can’t do very many good things with your life. Once you believe that the tragedy isn’t your fault, that it is the failure of the political system to acknowledge your rights as a human being, to be equal in society, that you can as an individual have a voice as part of a group, then you can make a difference.”

Disabled Perspectives in History

Historical records lack the perspective of most disabled people themselves, save for a notable few whose privilege awarded access to education and personal acclaim. Helen Keller was certainly not the first person to be born both Deaf and blind, but her family’s relative privilege granted Ms. Keller access to education and the social positioning to benefit from it. Helen Keller is an inspirational, barrier-breaking figure. That’s not up for debate. But it is noteworthy to mention that her privilege – having a well-connected white family with roots in Southern aristocracy – facilitated her success. Helen learned a variety of communication methods, including ASL, Braille, touch lip-reading, and speaking verbally. She attended college – a notable feat for any woman in her era – and went on to publish a dozen books, helped found several organizations (ACLU, American Foundation for the Blind, Helen Keller International), and even won an Oscar (Helen Keller International).

“Helen Keller taking a speech lesson from Annie Sullivan.” 1890-1895, Horace Mann School for the Deaf records. Source: City of Boston Archives, Collection 0420.047, Creative Commons.

Frida Kahlo is a famous Mexican artist and painter whose disabilities greatly impacted her work. The story of Kahlo’s trolley accident at age 18 is infamous, as well as the physical impact – a broken spine, broken pelvis, and a severe abdominal injury. Prior to this accident, she contracted polio at age 6, and is believed to have been born with spina bifida (Daunton). These experiences are well-known; Kahlo’s legacy has been tainted by pity and morbid fascination with her painful experiences. I believe she should be celebrated in a light that honors her experience. Not only was Kahlo a fierce, vibrant spirit with immense artistic talent, but she broke barriers for other disabled women of color.   Kahlo embraced the unique, rich perspective that she had gained through dealing with years of pain, vulnerability, and isolation – channeling it into powerful art. Frida Kahlo unapologetically existed as a disabled woman of color, presenting her body in all its beautiful, sexual, and painful complexities.

A painting by Frida Kahlo features two versions of herself side by side. One is in a white dress, the other in a blue top and green skirt. Both Fridas' hearts are visible, and connected by a vein.
“Frida Kahlo – Two Fridas (1939).” Source: Cea, Creative Commons.

Harriet Tubman is another extraordinary woman of color who was affected by disability. Tubman experienced a traumatic brain injury at age 12 at the hands of a slave owner. Tubman dealt with complications for the rest of her life including severe pain, seizures and/or narcoleptic episodes. Her disabilities may have contributed to her success, as Tubman’s narcoleptic trance-like episodes offered moments of great spiritual impact (Sabourin et al, 2016). A deeply religious woman, Harriet Tubman was guided by her faith to rescue hundreds of slaves over the course of thirteen incredibly dangerous escape missions. Tubman also is the first woman to plan and lead a military operation against the Confederacy – with stealth skills and knowledge of Southern geography, “General Tubman” conducted a successful raid on Combahee River that freed over 700 slaves (National Museum of African American History & Culture).

“Harriet Tubman (far left) with family and neighbors, circa 1887.” Source: Bettman/Corbis, Creative Commons.

Conclusion

The history of disability – as a movement, as individuals, as an identity – is rich, compelling, and intersectional. We should see it as an under-explored reserve of knowledge hidden by suppression, and a perspective to be treasured. Disability history demands to be re-examined and reclaimed in a framework of empowerment. It’s critical for incorporating disability rights into wider society. When you apply modern standards to historical events and figures, a narrative of agency and power can emerge. Simultaneously, it can reveal the despicable mechanisms that create, inform, and enforce oppression. As I said earlier — modern principles of universal justice and equity equip us to destroy structural injustice wherever it lurks within the depths of unchallenged social praxis.

Disability Rights, Health, and Medicine

Disability Symbols. Wikipedia, Creative Commons.

What is a disability?

“A disability is a condition of the body or mind that makes it more difficult for the individual to do certain activities and interact with the world around them.”

Approximately one in five adults in the United States has some type of disability. There are numerous types of disabilities that impact people’s daily lives through sight, movement, learning, or communication, although there are many others. Furthermore, even if two people have the same disability that doesn’t mean they are impacted the same way. Thus, individuals who have a disability do not consist of one general population, but instead a diverse population with various needs. Now the focus is more on how the word disability refers to the three components mentioned in the next paragraph and how there are numerous factors that go into having a disability.

The World Health Organization created the International Classification of Functioning, Disability, and Health (ICF). The ICF introduces the word disability into three main categories that are impairment, activity limitation, and participation restrictions. The term disability and impairment do not mean the same thing. Before the 1970s, the common view was that a disability is measured by whether or not an individual has an impairment or a health condition. In the 1970s there was the disability rights movement, which geared people away from this medical view. However, many people still focus on the more traditional, medical model of disability.

Disability and Health

Those with disabilities tend to face health care disparities such as less access to adequate care, both in terms of promoting health and preventing diseases. Some people even go as far as labeling those with disabilities as a medically underserved population. There has been some research on how people with disabilities usually have a lower quality of health and are more likely to experience secondary conditions. Some examples of the health disparities include not having interpreters during medical examinations, adults with developmental disabilities being at risk for secondary conditions such as obesity, seizures, and cardiovascular disease, and women who have disabilities are less likely to get Pap tests and mammograms. Furthermore, some other issues include misconceptions and stigmas surrounding the word disability, shortage of suitable training, lack of proper medical equipment and facilities, lack of accessibility, and little to no individualized accommodations.

Disability Rights. Flickr: Féin, Creative Commons.

The Stigma

While there are medical advances over the years in regards to individuals with disabilities, there is a stigma surrounding people with disabilities. They tend to be seen as individuals incapable of making decisions or helpless. There are implicit or even unconscious biases against individuals who have a disability. Furthermore, there are several articles on how the medical community treats those with disabilities as having less value than non-disabled people. The medical interpretation of a disability is viewed as a pathological disorder and so this perspective focuses on how one can treat or cure it, rather than a social problem. In contrast to the medical model, there is the social model of disability, which focuses on how disability is formed from a social situation or construct, rather than a person’s characteristics. This viewpoint focuses on dividing impairment from disability, rather than recognizing that one is a component of the other.

The National Council on Disability says, “people with disabilities comprise the largest and most important health care consumer group in the United States, yet the Institute of Medicine and others have warned that Federal agencies, policymakers, and health care systems have not yet responded to the broad-ranging implications, for individuals, and for society, of the demographic increase in disability as the population ages.”

Health Insurance

Another barrier is that people with disabilities tend to lack health insurance or adequate coverage for healthcare. The National Council on Disability conducted research and found that few health care training programs address disability issues in their curriculum and most federally funded health disparities research do not look at people with a disability as a disparity population. Furthermore, while Medicaid and Medicare cover some people with disabilities, these programs do not cover those who have private insurance. Private group plan insurances are usually given through employers; however, not all employers offer health insurance and not all people who have disabilities are working. Those who have private group plans through their employer are required to cover basic care for the average working population. Medical equipment such as wheelchairs, ventilators, and crutches are limited in terms of annual payments.

Individual plans charge higher premiums to individuals with disabilities. Persons with emotional disabilities consist of those most uninsured, closely followed by persons with visual or hearing disabilities.

The three key elements of health care insurance are availability, affordability, and coverage for critical benefits. Important benefits can include long-term care, mental health, and medications. There have been national surveys that found people with disabilities have a hard time figuring out the insurance system, visiting specialists, and obtaining medical equipment that is durable. Additionally, numerous essential health care services can be out of their budget, meaning that they go without certain things because they simply cannot afford it.

According to the Journal of Disability Policy Studies, “estimates suggest that these factors obstruct or delay care for as many as 30 – 50 percent of adults with disabilities.”

The Henry J Kaiser Family Foundation conducted a national survey that found, “health insurance is inadequate for more than one in three people with disabilities who reported delaying care, skipping medication, or going without needed equipment because of cost.”

Accessibility

Accessibility can be broken down into many different components. The two main sections to focus on are communication and physical access.

Physical barriers are objects that are either natural or manmade that hinder or block mobility or access. These barriers can include inadequate transportation, accessibility to the facility and offices, and lack of accessible exams. Something as simple as getting a mammogram exam can provide numerous difficulties because the mammogram machine cannot adjust for height or health professionals are not adequately trained for lifting assistance. Thus, some health professionals conduct exams while patients are in their wheelchairs, which can yield inaccurate results. Other physical barriers include parking at the medical facility, entering the building, and the bathroom facilities, making it more difficult for someone with a disability to receive proper care.

Proper communication and education are required to make a change. Individuals with disabilities should feel they can discuss their challenges without fearing discrimination, while, those in the healthcare field should appropriately discuss, support, and address the challenges people with disabilities face. Research shows there is a lack of awareness and inadequate instruction among health care providers. For example in Connecticut, “91% of primary care physicians said they had no training in intellectual and developmental disabilities.” Without proper training, people tend to make assumptions about people with disabilities and often times they are incorrect. Some stereotypes include thinking that those with developmental disabilities cannot feel pain so they do not need anesthesia, people who are deaf have problems with their cognitive functioning because they are not fluent in standard English, or women who have disabilities do not need reproductive care because they are assumed to be sexually inactive. Making assumptions is not only harmful to the health of the patient but also it undermines who they are as a person. This can lead to damaging the patient-provider trust and provoke people with disabilities to not even bother to seek care. Ultimately, having access to appropriate health care can prevent new health conditions and could possibly stop current health conditions to worsen. In order to be effective and efficient, health care must be inclusive and accessible.

 

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.

 

Accessibility and Education

 

Parking spot reserved for people with disabilities
Wheelchair Only. Source: JoshuaDavisPhotography, Creative Commons

For most people, the importance of the right to an education is not unknown.  It’s through education that people gain the skills that they need to be active in their communities, join the workforce, and live their daily lives.  While there is certainly division in regard to people’s ideas of exactly how systems of education should work, there continues to be a shared understanding that these systems should exist in some capacity.  The importance of the right to an education for people with disabilities is not well known or, at least, not as actively recognized, but it should be.

Background of Disability Rights and Education in the U.S.

The Individuals with Disabilities Education Act (IDEA) took effect as the Education for all Handicapped Children Act of 1975.  It was meant to improve the access that children with disabilities have to “a free appropriate public education” and an environment that supports, rather than impedes, that education.  Part of IDEA is a requirement that public schools develop an Individualized Education Program (IEP) for each student with a disability who is enrolled.  IEPs are created and tailored specifically to the needs of each student, because even people who have been diagnosed with the same disability have differing experiences and face different circumstances.  These programs are reviewed every year by the student’s teacher, parent(s), the child themself and a qualified agency representative related to special education.  Other individuals can be brought in to review the program at the discretion of the parents or agency involved.

The Americans with Disabilities Act (ADA) was enacted in 1990 and prohibits “discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications.”  Title II of the act requires state and local governments to make their services and resources equally available to people with disabilities.  According to Title II, there are architectural standards that suggest buildings should be accessible to all people.  Buildings constructed after the act passed are expected to meet these standards upon when they are built, while buildings that were constructed prior to the passing of the act are to be altered.  Since the services/resources of state and local governments include public educational institutions, these institutions are expected to meet these standards, which helps to make education more accessible.

Acknowledgement Is Not Enough

Despite the American legislation put in place to ensure educational equality for students with disabilities, there is still a lot of work to be done.  Laws have been created but are not always followed.

The Oregon Department of Education, for example, is being sued by Disability Rights Oregon (along with four other legal groups) due to its “lax oversight of special education programs . . . in small, rural communities.” Many schools in the state have been found to give students with learning or behavioral disabilities a shortened school day of only a few hours.  The schools have given a range of explanations for shortening student’s school days, from saying that they were responding to inappropriate behavior (some of which is related to the symptoms of the students’ disabilities) to teachers saying they had a feeling that “it was going to be a bad day.”  In many cases, the students would be able to get through a normal school day if they had the resources they need.  They simply have not been given the opportunity to try.  The lawyers involved in the lawsuit wrote, “Some children who are subjected to shortened school days due to their disability-related behaviors are eventually denied any instruction at all.”  This is a denial of their right to an education and it cannot continue.

The seclusion and unfair treatment of students with disabilities in the U.S. is not limited to Oregon.  According to the U.S. Department of Education Office for Civil Rights, more than 36,000 students were secluded during the 2015-2016 school year, and 66% of those students were students with disabilities, despite only making up 12% of all students enrolled.  Students with disabilities also make up 26% of those who received out of school suspension and 24% of those who were expelled.  Part of the problem is that the federal government does not currently have any actual regulations related to the seclusion of students with disabilities.  It merely suggests that seclusion be used if a student is a physical threat to themselves or others and that the seclusion should end when the student is no longer a threat.  Due to its impact on students’ access to their education, this issue needs to be dealt with as quickly as possible.

Library books. Source: CCAC North Library, Creative Commons

An International Problem

This problem can be found around the world.  In Nepal, for example, children with disabilities are far from having their educational needs properly met.  In 2011, Human Rights Watch (HRW) estimated that more than 207,000 of the country’s children have disabilities.  In 2016, 30.6% of children with disabilities were not attending school.  In some cases, the students with disabilities who are enrolled in school are kept in classes that are completely inappropriate for their age group.  According to HRW report on the situation, one sixteen-year-old named Amman was placed in Class 2, where his classmates were between the ages of seven and ten years-old.  His disabilities are physical, limiting his movement and speech but not his mental development.  The school has steps at its entrance with no ramp available, forcing Amman to crawl to his classroom.  He was not able to use the restroom during the six hours school was in session, so another student would have to go to his house and get his mother to come to the school and help.  Not only is this an immense barrier to Amman’s access to his education, but it also an utterly dehumanizing way to treat someone.

The country is not ignorant of the fact that people with disabilities have a right to an education.  In 2010, the country even ratified the United Nations’ (UN) Convention on the Rights of Persons with Disabilities, which aims to promote and improve the access to the rights of people with disabilities around the world.

Recent Developments

Though many problems still exist in the field of education for people with disabilities, progress is being made.  On January 17, 2019, the U.S. Department of Education announced plans to “work with schools to reduce incidents of improper restraint and seclusion of students with disabilities”.  They will use “compliance reviews” of school systems under suspicion of improper restraint and seclusion of students and “offer guidance on obligations under federal civil rights law.”  According to Elizabeth Hill, spokesperson for the Education Department, they plan to do more than 70 interviews each year.

Disability Rights Are Human Rights

In public conversations about human rights, people with disabilities are often left out or overlooked.  It is important that we intentionally work towards being more inclusive.

Article 24 of the UN Convention on the Rights of Persons with Disabilities (which the United States has still not ratified) focuses on the right to education.  According to the document, countries associated with the UN are expected to “ensure an inclusive education system at all levels and lifelong learning”.  This involves making sure that people with disabilities are not kept separate from the rest of the education system and receive the support they need.

In addition to acknowledging the right to education for people with disabilities, Article 24 includes an explanation of why education is incredibly vital, both in general and specifically in the lives of people with disabilities.  Education facilitates the development of one’s view of others and themselves, their personality, their creative talents, their mental and physical abilities, and their ability “to participate effectively in a free society.”  These developments shape the role that each individual plays in the world, making education an absolutely priceless and fundamental human right.

Resources at UAB

Students at the University of Alabama at Birmingham can contact the campus’s Disability Support Services (DSS) to request accommodations through their website or at 205-934-4205.  This process involves completing an online application, submitting documentation of their disability, and having an Accommodation Planning meeting.  Accommodations that are often used include reduced distraction testing, extended time on exams, note-taking services, assistive technology, and captionists/interpreters.

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.

 

At the Intersection of Disability and Everything Else

Kiribati 2009. A blind man sitting at a Braille machine
Kiribati 2009. Photo: Jodie Gatfield, AusAID. Source: Department of Foreign Affairs and Trade, Creative Commons.

When someone says the word intersectionality, do human rights come to mind? Maybe but probably not. For some people, intersectionality is a just buzzword used by protest movements or the liberal media, while for others is a means of social identification. It is okay if you have never heard of it or do not understand it or know how to define it, you are not alone. Although it is an identifier and has mainstream vernacular usage, scholars like sociologist Patricia Hill Collins acknowledge that intersectionality is challenging to define, and only slightly easier to identify when recognized. Hill Collins asserts that “scholars and practitioners think they know intersectionality when they see it. More importantly, they conceptualize intersectionality in dramatically different ways when they use it.” Thus, an essential aspect of societal understanding and identification of intersectionality is our knowledge of its dependent relationship to power and inequity. Intersectionality must have a subject (a person or group of people) that experiences inequality (subjugation/oppression) because of its/their relation to power (the dominant with the hierarchical structure).

Intersectionality relies heavily on social constructions like race or gender, but not as a singular point of inequality. The term “intersection” demands another point—an interlocking point–of inequality. For example, intersectionality must critically examine the subjugation experienced by a person with blindness who is a Hispanic trans woman as well as a teenage girl who is Arab and a wheelchair user, respectively. Both are members of marginalized populations: ethnicity – Hispanic and Arab, gender/sexuality – a trans woman and teenage girl, and disability – blindness and wheelchair user; therefore, the intersectional analysis must include at least two points of oppression. The and makes the difference. For this to occur effectively, individuals must determine how they will employ intersectionality as a definition, in addition to a research tool.

In her essay, Hill Collins sheds light on three possible frameworks for intersectionality: a field of study that examines both content and themes that might be characteristic, an analytical strategy reliant upon intersectional frameworks to explain the social world, and a form of critical praxis connected to social justice practice via scholarship. Intersectionality has increased in popularity as society becomes more aware of the work of critical race theorist, Dr. Kimberlé Crenshaw, and with the rise of protest movements. Many people identify Crenshaw as the creator of the term intersectionality, but Black feminist scholars point to Anna Julia Cooper, Audre Lorde, and the Combahee River Collective, among others as describing the concept in their works years and centuries before Crenshaw.

First, as a field of study, intersectionality has positives and negatives. The positives lay in its complementary adaptability with other disciplines and areas of study, yet, it is here that many of the negatives exist as well. Citing Edward Said, Hill Collins notes that “theories can lose their originality and critical stance as they travel from one domain to another” (6). This travel can result in the misrepresentation of the original intent and the exclusion of some scholarship as has happened over time in fields of study like Black feminism.

Second, as an analytical framework, intersectionality must “rethink” constructs, not only as concepts of work and family but violence and identity, and in direct relation to “underutilized” categories of analysis like class and age. It is at this juncture that disability rights activists and scholars demand an increased inclusion. Using Stuart Hall’s theory of articulation, Hill Collins questions how it is possible for two sets of ideas, the expressed and unexpressed, to create the necessary knowledge needed for an intersectional canon (15). Hill Collins questioning aligns with Ellen Samuels’ assertion that disability remains underrecognized as a “legitimate or relevant position from which to address broad subjects” and Michael Berube’s pronouncement that disability must continually battle against gender, race, and sexuality in various areas. Historically, there has been an imbalanced pattern of research due to the heavy focus on the intersections of race and gender; yet, when considering that one in five human beings live with a disability, multiple constraints apply and extend beyond gender and race.

Lastly, as a praxis, intersectionality can contribute perspective by elucidating areas of social inequality as activists and scholars increase their political engagement. Sociologists Hae Yeon Choo and Myra Marx Ferree observe three ways that intersectionality is/can become practiced: group-centered, process-centered, and system-centered. They caution that even in practice, neglect occurs in facets of the intersectional analysis despite best efforts to adequately include, analyze, and identify because as Crenshaw notes, sometimes conflicting political agendas detract from the areas of oppression.

boys with physical disability playing soccer
Soccer – Boys from one of Mumias’ schools for the physically handicapped. Source: Brenda, Creative Commons

The Intersection of Disability and Everything Else

In many societies today, disability, like most categories of marginalization, boxes members as differing from the norm or as the needy and helpless Other. In many ways, disability has become a fetishized difference and a source of ‘inspiration porn’ when foregrounded in the mainstream via social media, television, and movies. What if activists and scholars began to utilize the constellation of knowledge as outlined by Hill Collins and Choo and Ferree through the employment of an analysis of the intersection of disability and everything else? Persons with disabilities are the global majority when accounting for the entire spectrum of disability; thus, we as individuals who make up the collective, have a chance to bring those surviving on the margins into the center of analysis and discussion.

Humanity must begin to see the inclusion of disability as a prerequisite for the dismantling of structural violence and social injustice. Black feminist and lesbian Lorde, in her comments to a New York conference audience, protested that “survival is not an academic skill. It is learning how to stand alone, unpopular and sometimes reviled, and how to make common cause with those others identified as outside the structures in order to define and seek a world in which we can all flourish. It is learning how to take our differences and make them strengths. For the master’s tools will never dismantle the master’s house. Racism and homophobia are real conditions of all of our lives in this place and time. I urge each one of us here to reach down into that deep place of knowledge inside herself and touch that terror and loathing of any difference that lives there. See whose face it wears. Then the personal as the political can begin to illuminate all our choices” (112-3). If disability replaced either racism or homophobia in Lorde’s quote, how does the level of analysis and research begin to change the conversation surrounding our social understanding of these areas of oppression and subjugation? Intersectionality forces humanity to come to terms with the lack of knowledge about difference while confronting the terror and loathing of difference which lurks inside us as barriers and outside of us as social institutions and societal norms. In whatever form intersectionality finds usage, it is imperative that it remains a tool that dismantles injustice at the personal and political level.

 

**Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.

Disability Laws: The Power of Policy

Gavel
gavel, cckrt, Creative Commons

Laws and policies not only reflect policy-makers’ knowledge about cultural norms but laws and policies also actively shape our cultural norms as well (Benabou & Tirole, 2011). Inclusive laws and policies may negate the reinforcement of discrimination of marginalized groups by changing attitudes towards said groups over time. This is especially true of the disability community. Prior to the enactment of inclusive policies, persons with disabilities could be legally and explicitly discriminated against in the fields of education, medicine, and employment. Persons with disabilities still face discrimination, but the following laws make strides toward shaping the United States into a more inclusive for persons with disabilities, and these laws have played a key role in shaping cultural norms regarding these issues.

Civil and political rights are protected by many different laws for all Americans; however, key pieces of legislation pertain specifically to persons with disabilities. Currently, three major federal laws protect persons with disabilities in the United States: the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act (IDEA) of 1975, and the Americans with Disabilities Act (ADA) of 1990. Additionally, the United Nations also has implemented the Convention on the Rights of Persons with Disabilities (CRPD), an international commitment to promote accessibility on the global scale.

 

The Rehabilitation Act of 1973

The Rehabilitation Act was the first piece of civil rights legislation to explicitly identify the rights of persons with disabilities and outlaws the discrimination on the basis of disability in Federally-funded programs. This includes barring programs conducted by Federal agencies, programs receiving Federal financial assistance, and Federal employment from discriminating against persons with disabilities.

The Rehabilitation Act also:

  • Defines persons with disabilities as those who have a physical or mental impairment that limits a major life activity, such as walking, seeing, hearing, speaking, learning, or working.
  • Gives students with disabilities the right to appropriate education.
    • ‘appropriate education’ is defined in this context as education that meets the unique educational needs of a student.
  • Requires parents must be notified if their children are tested for learning difficulties, are identified as having a disability, or placed into special education programs. Parents are also given the option to object to their child’s evaluation results through a formal, impartial hearing.
  • Mandates students with disabilities should be educated with their non-disabled peers when appropriate.

The Individuals with Disabilities Education Act (IDEA)

The IDEA requires children with disabilities receive a free and appropriate education in the least restrictive environment appropriate to their individual needs and provides financial incentives for public education institutions complying with federal disability laws. IDEA also requires the implementation of Individualized Education Programs (IEP’s) for each child. These programs are developed by a team of individuals knowledgeable about the child’s situation (typically the child’s teacher, the parents, the child, and oftentimes an agency representative who is qualified to provide special education) and are required to be reviewed annually.

The Individuals with Disabilities Education Act also:

  • Protects children (up to age 21) deemed eligible for special education services.
  • Allocates funds assisting states and other education agencies to meet special education requirements.
  • Requires children in special education programs have a written IEP.
Statue holding the scales of justice
Scales of Justice, Creative Commons

The Americans with Disabilities Act (ADA)

The ADA prohibits discrimination on the basis of disability in employment, state and local government, public accommodations, commercial facilities, transportation, and telecommunications and also applies to the United States Congress.

The Americans with Disabilities Act also:

  • Prohibits explicit discrimination in recruitment, hiring, promotions, training, pay, social activities, and other privileges of employment and restricts questions that can be asked about an applicant’s disability before a job offer is made for employers who possess more than 15 employees.
  • Requires employers “make reasonable accommodations to the known physical or mental limitations of otherwise qualified individuals with disabilities, unless it results in undue hardship”(29 CFR Parts 1630, 1602 (Title I, EEOC)).
  • Requires state and local governments follow specific architectural guidelines in the new construction and alteration of their buildings.
  • Provides a telephone hotline if disability-related complaints need to be filed. These complaints are filed with the Department of Justice, who may provide mediation programs if necessary.
  • Requires all public transportation services (such as city buses and public rail transit) are fully accessible.
  • Requires common carriers establish interstate and intrastate telecommunication relay services 24 hours a day, 7 days a week.
  • Requires closed captioning of federally-funded public service announcements.

 

The Convention on the Rights of Persons with Disabilities (CRPD)

The CRPD and its Optional Protocol were adopted by the United Nations in 2006. With 82 signatories to the Convention, 44 signatories to the Optional Protocol, and 1 ratification to the Convention, the CRPD has the highest number of signatories in history to a United Nations Convention. It is also the first legally binding, international treaty protecting the rights of persons with disabilities. The CRPD is the first human rights treaty of the 21st century and is the first to allow both regional economic integration organizations and civil society are parties to negotiations of a Convention. The UN defines the CRPD as “a human rights instrument with an explicit, social development“. This document reaffirms persons with disabilities (not restricted to physical and/or visible disabilities) must enjoy all fundamental freedoms and human rights.

The Convention on the Rights of Persons with Disabilities also:

  • Is the fastest growing treaty in the history of the UN.
  • Embraces a human rights-based approach (HRBA) of disability. HRBA shifted the approach to disability from “objects” of charity, social protection, and medical treatment towards a doctrine of human rights, envisioning persons with disabilities should make their own decisions about life, the future, and claim rights on their own behalf.
  • Defines disability as an evolving and open concept.
  • Encourages the participation of civil society, particularly persons with disabilities and their related organizations. This follows the Convention’s slogan, “Nothing about us without us.”
  • Protects persons with disabilities from direct and indirect discrimination and provides reporting mechanisms if a person’s rights are violated within the context of the CRPD.
Graphic featuring the globe, United Nations logo, Scales of Justice, and disability logo
Disability laws connect, Mathew Hobbs, Creative Commons

Why Disability Laws and Policies are Needed

There are more than 1 billion people in the world are currently living with a disability; about 59.7 million of them live within the United States. Batavia (2001) asserts civil rights legislation, such as those aforementioned, open doors for persons with disabilities that were otherwise sealed shut while also normalizing persons with disabilities in the workplace and beyond. It is apparent that such legislation has moved the United States and the world toward a more inclusive and accessible world, but there is still work to be done. Batavia (2001) points out less than 20% of complaints filed under the ADA end up ruling in favor of the defendant. This is the typical average for complaints filed under anti-discrimination laws in the United States; however, Batavia also argues the percentage for the ADA specifically should be much higher due to the uniqueness of each individual disability and necessary accommodations for them. Society oftentimes reinforces views of persons with disabilities as a ‘burden’ or ‘incapable’; one way to break these negative stigmatizations is via policy and respecting those policies as citizens.

If laws are changed, then public opinion toward a particular subject may change along with it. However, this change takes time; when sodomy was decriminalized in the United States in the 1950s, public opinion on same-sex and other queer couples began to shift. The shift over time pressured the Supreme Court to rule in favor of Queer Rights when same-sex couples gained the right to marry in 2015. The LGBTQ+ community still faces many obstacles today, but they are substantially less than those faced before favorable legislation was passed. Without a tireless effort, laws such as the ADA or the CRPD may have taken a much longer time to manifest. These efforts must continue in order to eradicate the stigma surrounding persons with disabilities.

 

References:

Batavia, Andrew I., and Kay Schriner. “The Americans with Disabilities Act as Engine of Social

Change: Models of Disability and the Potential of a Civil Rights Approach.” Policy

Studies Journal 29.4 (2001): 690-702.

Benabou, Roland, and Jean Tirole. Laws and Norms. No. w17579. National Bureau of

Economic Research, 2011.

 

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.

Disability Advocacy and Technology in the 21st Century

Images of The Gang of 19 and “Capitol Crawl” will forever be remembered as pivotal moments in the U.S. disability rights movement alongside international achievements such as the first Paralympic Games in Rome, African Decade of Disabled People, and UN Convention on Rights of Persons with Disabilities. There are those who foster the value-based assumption that picketing, chanting, and public fervor are the appropriate methods to fighting the good fight. However, as digitalization rapidly enters our homes, schools, and places of work, modern technology offers a myriad of new ways to advocate for the rights of people with disabilities, namely social networking platforms and phone apps.

Many of those who engage with social networking platforms have heard of social media subcultures such as Asian-American Twitter, Black Twitter, and Feminist Twitter. These digital subcultures often address sociocultural issues related to their communities and galvanize captivating hashtags, like #BeingAsian, #BlackLivesMatter, and #MeToo, that take the mainstream media by storm. Among, and often intersecting with, these social causes is a growing phenomenon that could be referred to as Disability Twitter. Here, disabled activists share individual narratives coupled with hashtags, such as #AbledsAreExhausting, #DisabledAndCute, and #ThisIsAbleism, as well as address cultural, social, and political issues affecting the disability community through sentiments like #CripTheVote (accessible voting), #DisabilityTooWhite (limited representation of people of color with disabilities), and #SuckItAbleism (plastic straw ban). Such efforts have also been extended to social media platforms such as Facebook and Instagram, further capturing the attention of disability rights to internet users worldwide, generating dialogue and solutions that relate to accessibility.

smartphone. Source: pixabay.com, Creative Commons

With two-thirds of the globe connected by a mobile device, usage of phone apps has become the norm for many people. While many people use such apps for daily tasks and leisure, others utilize these platforms to amplify justice-related causes, namely access for people with disabilities. For example, Wheelmap is a service that allows users to locate and mark accessible places in seven languages. One does so by rating a respective space with a traffic light system that indicates green markings are wheelchair accessible, yellow markings have restricted wheelchair access, and red markings are not wheelchair accessible. Voice of Specially Abled People (VOSAP) is an India-based organization who created a phone app with the same name which crowdsources accessibility data so it can be used to inform community leaders and promote awareness. VOSAP also allows users to make an action pledge that supports people with disabilities so communities can correspond with allied parties. Parking Mobility is another phone app that offers a self-reporting mechanism, although this service allows users to report abuse of accessible parking spots. For partnering communities, such reports are forwarded to local law enforcement and citations are mailed to the registrant of the vehicle. Please contact Parking Mobility to inquire about getting your community involved in this program. There are also many other phone apps designed for personal assistive use such as Be My Eyes (navigation for blind and visually impaired), RogerVoice (subtitled phone calls), Miracle Modus (self-relief for Autistic persons), and Medication Reminder (people with Alzheimer’s and dementia). As a result of these diverse phone apps, there are multiple ways for people to self-advocate as well as spread information about accessibility.

As demonstrated, social media and digital technology have engendered revolutionary ways to address issues salient to the disability community, allowing self-advocates and allies to communicate about current challenges, successes, and resources. Therefore, simply opening your computer, tablet, or phone to navigate these issues, alongside other intersecting causes, shines a brighter light on the importance of disability rights, access, and representation in the 21st century.

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.

Disability Rights: A Personal Perspective

* This is a repost from summer 2017

Myself signing for my sorority in front of a section of member nation flags on our last day at the United Nations.

“The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.” When I was hired by the UAB Institute for Human Rights, I never dreamed that we would take the trip to the United Nations for the 10th Convention of States Parties on the Convention on the Rights of Persons with Disabilities. Visiting the United Nations has always been a dream for me, but being able to take part in an international effort to promote disability rights was an unbelievable opportunity to me personally.

Disability has always intersected my life. My sister and I were born with Ehlers-Danlos Syndrome, which is basically a fancy way of saying that all the connective tissue in our bodies are about as stable as a limp noodle. Because of EDS, chronic pain is just a part of my life. I am unable to run, walk, or jump without a joint in my body threatening to dislocate. I suffer from sleep disorders and chronic fatigue along with a host of gastrointestinal issues. It also affects my heart and my autonomic nervous system; I tend to feel like a walking time bomb of anxiety, heart palpitations, and general malaise all wrapped up in a spaghetti-based body. I have lived my whole life without complaining for the most part. Most people in my life don’t know the extent of my disability, or even about it at all. I keep my pain hidden because I do not want anyone’s pity. I continue physically far beyond what my body’s real limits are because I do not want people to think I am lazy or helpless. It takes too much time to explain my disability to everyone I meet, so I deal with my pain with a smile on my face. This is the reality that most people with disabilities face—a life of “oh, I’m so sorry for you!” when they learn of your disability and “why can’t you do this?” when they do not understand your limits. My struggle as a woman with a disability is the reason why the Convention meant so much to me. Before the Convention, I had never in my life been around more than two people with disabilities or ever felt like anyone truly understood what I was going through. Seeing so many other people with disabilities raising their voices, sharing their pain and suffering, and demanding change gave me hope that one day I will no longer feel like I need to hide my disability.

Photo of the team at lunch at the United Nations.
Photo of the team at lunch at the United Nations.

I have always known that having a disability does not mean you cannot be strong and independent. Not being able to walk for long periods does not make me lazy, and my joint instability does not make me weak. I know these things, but sometimes the able-bodied world undermines these beliefs and makes me feel like I will never be good enough. The champions of disability rights who I met gave me such courage to fight those fears. The utter strength and bravery of these people were so encouraging to someone like me. I could see myself in Daniela Bas, the head of DESA and wheelchair user. Ms. Bas has managed to overcome so many obstacles as a woman with a disability yet constantly dazzles people with her charismatic personality and fierce intellect. Ms. Bas gave her knowledge on the importance of international cooperation in dismantling the cross-cutting barriers faced by women with disabilities. Her policy-based approach and political science background gave me hope that one day I could follow in her footsteps. Ms. Mia Farah, of the Lebanese Association for Self-Advocacy, gave me such encouragement from her passion, skills, and independence as a woman with Down Syndrome. Ms. Farah organized one of the most enjoyable and successful side events I attended, despite the challenges that her intellectual disability can bring. Her story of her successes resonated with me because I have always feared my limitations. Mia Farah showed me that limitations that others place on you because of your disability don’t have to define you.

I not only found inspiration during my time at the UN but a wealth of new knowledge as well. Every individual gave new insight on disability rights that I had never considered before. Natalie Draisin spoke on road safety for women and girls with disabilities, and how unsafe roads and transportation can be fatal—an important issue that many ignore when discussing disability rights. I was touched by the story of Flavia Cintra, a Brazilian journalist, whose doctor told her to abort because he believed that tetraplegics should never have children. Ms. Cintra shared how Brazilian mothers with disabilities often lose custody of their children and have their reproductive rights stolen from them through deceptive paperwork. Some wedding officiators even refuse to marry people paralyzed below the waist because they are believed to be unable to bear children. I never knew any of these issues before speaking with Ms. Cintra. As a reproductive rights activist, Ms. Cintra’s story made me understand the importance of including people with disabilities in our activism. All of the stories and experiences that were shared with me hit deeply and gave me such insight into international policies on disability rights.

Audience view during the side event by IHR and IDPPS teams’ “Making Disability Rights Real: Implementing the CRPD through Regional Cooperation with Lessons Learned from ASEAN.”
Audience view during the side event by IHR and IDPPS teams’ “Making Disability Rights Real: Implementing the CRPD through Regional Cooperation with Lessons Learned from ASEAN.”

The global environment for people with disabilities is harsh, whether one is in Brooklyn, Bogota, or Bangkok. All over the world, people with disabilities deal with compound discrimination, lack of adequate healthcare, limited access to resources, sexual abuse and assault, and the negation of their independence.  Having this opportunity to partake in the implementation of policies on disability rights was genuinely life changing. Viewing the inner workings of the United Nations made me realize that I wanted to make a career in the international nonprofit organizations that work with the UN to effect change. It was incredible to see people from so many different places, all speaking in different languages. I could be listening to a speaker in Chinese, and put on a headset to have it translated live into French, Russian, English, and several more. Watching the sign language interpreters onstage during meetings was so thrilling— not only was it beautiful to watch, it also was critical in making the events accessible to the deaf and hard of hearing. These events made me realize how necessary sign language is to have a successful career in advocacy, because the inclusion of nonverbal people is vital. I will always look back on this trip to the United Nations as the moment when I found my calling. As I have always tried to ignore my disability, I had never realized until now how central disability rights are to my life. Being around such fearless role models brought to life a passion to fight for the rights of women and girls with disabilities around the world.

 

ADA: Civil Rights Legislation for All

* This is a repost from summer 2017

by ABBY ROSS

July 26 1990 ADA Signing Ceremony
July 26 1990, Signing of the Americans with Disabilities Act. Source: United Spinal Association

Today marks the 27th anniversary of the signing of the Americans with Disability Act (ADA). This was a truly groundbreaking piece of civil rights legislation that finally took permanent steps towards ensuring equality for all Americans. The ADA requires private and public entities to not discriminate against people with disabilities, and was crafted with the goal of integration in all aspects of society – employment, social settings, government, transportation, and beyond.

James Weisman, President & CEO of United Spinal Association – a nonprofit dedicated to enhancing the lives of people with spinal cord injury/disorder – has been a disability rights attorney for nearly forty years and had significant involvement in drafting portions of the Americans with Disabilities Act. He sued New York City as a young lawyer over inaccessible buses and subway stations. The implementation of mandatory bus lifts and key subway stations with elevators for wheelchair access were direct results of his lawsuit. This became the basis of the transportation sections of the ADA, and created a precedent across the country giving individuals with physical disabilities access to transportation and thus increasing independence.

Unbeknownst to Weisman, it was just the beginning of his advocacy work specifically related to transportation accessibility for wheelchair users. In the 1990s, United Spinal Association again brought litigation against the City of New York this time related to curb ramps – the corner of sidewalks that are altered to allow wheelchair users and parents with strollers to access the sidewalk from the street. The City was ordered to install ramps on all sidewalks and some twenty years later is still working to fully complete the project. He works on wheelchair accessibility in the taxi and transportation realms with companies like Uber and Lyft. With technology transforming transportation services, he remains committed to ensuring that accessibility is a priority from design to implementation across the transportation industry. Transportation is only a slice of the work that he has been involved in throughout the last forty years as disability rights truly extend to every aspect of an individual’s life. I wanted to hear his thoughts on this important anniversary, forty years of activism as well as reflections on today’s disability rights movement.

Senator Tom Harkin, ADA Sponsor & James Weisman at the NYC ADA25 Disability Pride Parade. Source: United Spinal Association

AR: What is the connection between disability rights and human rights?

JW: Disability rights has always been the bastard child of the rights movement. There is no real “ism” attached. Ableism is the closest thing but that is not definitive. Disability is in every group. There is no country, population or demographic that doesn’t include people with disabilities yet they still can face the hallmark issues of human rights discrimination. Poverty, isolation, inadequate healthcare, underemployment and exclusion are all barriers to independence and equality. People with disabilities face these issues day in and day out.

AR: Where do you see disability rights discussions and action moving in the future?

JW: For a few years, we were making significant progress across the board but with the new administration, we are back to basic rights. Now, the choice to live in the disability community is gravely threatened. Funding for support services that would allow people with disabilities to live independently, work, go to school, shop, go to the movies – live a “normal” life – is being slashed and the impact is tremendous. The proposed changes to healthcare would also have a dramatic effect on quality of life, self-sufficiency and frankly, life expectancy for severely disabled individuals. Simply staying alive is becoming a goal of advocacy again.

Apart from these issues of the day, which will likely always be present in some form, mental health stigma is the next biggest issue and will take the most work to overcome. The complexity of diagnoses and treatments paired with the lack of education and familiarity has created enormous barriers and misunderstanding.

And of course, transportation is always an issue. Innovation must include accessibility. Every new modality should be accessible from inception. – in 2017 it is ridiculous to even consider developing technology that wouldn’t include everyone and consider an aging population in design.

AR: Where have you seen the most progress in disability rights in the last 27 years?

JW: Without a doubt, it is the built environment. Physical accessibility is the easiest to measure, quantify, regulate and learn how to fix. There have been amazing advancements in what is considered normal in terms of building design and features. Automatic entries, lever style door handles, accessible restroom stalls – all things many people don’t even notice but are essential for wheelchair users and others with mobility impairments.

James Weisman and Ian Ruder at United Spinal’s Roll on Capitol Hill Advocacy Event, 2012. Source: United Spinal Association

AR: In your opinion, what is missing from the movement?

JW: Collective identity with the rest of the country. People with disabilities are a tremendous minority group but generally not understood or engaged in the same respect that the able-bodied public is in terms of employment, education, media, advertisers, athletics, etc. Society seems to perpetually need to be re-educated about disability. The image of people with disabilities used to range from heroic to pathetic – that has changed and I believe now ranges from needy to competent but continues to be somewhat one dimensional. For instance, the wheelchair user who is the leading man’s best friend but not the leading man. One in five Americans have a disability. – We all have a friend, uncle, neighbor or colleague with a disability that we consider “our disabled guy” – we know they operate in the world, go to work, school, church, buy groceries and socialize but somehow our personal experiences are not extrapolated out to our experiences with the greater disability community.

To some degree we are missing the next generation of disability rights leaders. Many of my colleagues have been involved in these battles for thirty years or longer when the fights were about the basics – access to buildings, transportation, education. Fortunately, we have progressed since then to more sophisticated issues but there are still barriers on many fronts. The next generation of leaders will need to understand the history of the movement, the landscape of the challenges and the best possible outcomes for the disability community. We have so many bright individuals, disabled and able-bodied, that are doing wonderful work around the country – I am sure that the disability rights movement will be in good hands.

AR: What lessons have you learned in your decades of disability activism?

JW: Good ideas eventually come to fruition. It just takes time. You must keep them on the table, keep talking, keep pushing. Nothing changes if you don’t push. That often means you lose and it is one step forward three steps back but I’ve seen dramatic change in a relatively short time so I know it can happen.

Bias goes away if you expose it. Again, not necessary quickly and not completely, but every little bit helps.

I’ve found that it is extremely rewarding to be a part of this community and social fabric. I have developed extremely meaningful relationships through my work in disability rights. It is a very effect way to mature as a person – to understand the grand scale of the movement and issues as well as the microcosm of individual struggles and concerns.

AR: Finally, why should disability rights matter to every American?

JW: Dependence is expensive. Way more expensive than independence. Dependence is person specific and labor intensive whereas independence often requires only one-time investments. Motorized wheelchairs, building alterations and other assistive technologies certainly aren’t cheap but are essential tools for personal liberty.  The goal of the Americans with Disabilities Act and the goal of all the work that we do around rights is simple – to give opportunity. I always say that the greatest opera ever written or the cure for cancer or other remarkable achievements may be locked in the head of an individual with disabilities who without the services, tools and right to independence will never have the opportunities they deserve to share, create and succeed. Do we want to pay to take care of everyone when the alternative – increasing access to education, employment and opportunities is by far the better alternative?

Disability rights are human rights. People with disabilities are individuals of all ages and backgrounds who are striving to be independent and active participants in society. They are moms, colleagues, wounded warriors, uncles, kids with big dreams, best friends and neighbors. They have families, jobs, hobbies, likes and dislikes and problems and joys. While the disability is an integral part of who they are, it alone does not define them.

 

Abby Ross is the Chief Operating Officer of United Spinal Association headquartered in NYC.

James Weisman was the General Counsel of United Spinal Association for 35 years prior to becoming President & CEO in 2015.

CRPD: Implementation for the people, by the people

** As the IHR and other sponsors prepare for the “Symposium on Disability Rights,” the next few weeks will highlight some posts from the past as well as feature new posts written to provide some background into the various panel focuses.  

* This is a repost from summer 2017.

a picture of the CRPD CoSP banner outside of the UN
Source: Ajanet Rountree

The UAB IHR team had the opportunity to participate as rapporteurs in the Conference of State Parties (CoSP) annual meeting at the United Nations headquarters in New York City. In accordance with Article 40 of the Convention on the Rights of Person with Disabilities (CRPD), CoSP consists of convention signatories responsible for the implementation of the Convention. This annual meeting is the “most diverse international disability meeting in the world” because it brings together UN agencies, non-governmental organizations, human rights institutions, disabled persons organizations (DPOs), and civil society.

Estimated at 1 billion, persons with disabilities are the largest minority worldwide, facing considerable marginalization in every day life. The CRPD is the first human rights treaty of the 21st century, with the expressed purpose of ensuring that “all persons with all types of disabilities…enjoy all human rights and fundamental freedoms”. Adopted by the United Nations General Assembly in December 2006, the CRPD is the first treaty “open for signature by regional integration organizations” (app) who exercise the social development dimension by changing attitudes and approaches to persons with disabilities.

The UN Enable website designates the mandate of CRPD as “the movement from viewing persons with disabilities as “objects”  of charity, medical treatment, and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights, and making decisions for their lives based on their free and informed consent as well as being active members of society.” In other words, CRPD focuses on the human being rather than the disability, and its implementation teaches the world to do the same. As of November 2016, 168 states and the European Union ratified the Convention; the United States has not.

The CRPD presents a disabled perspective to an able-bodied norm. Through the CRPD, persons with disabilities– disempowered through invisibility that is rooted in an able-bodied world, which often forgets their existence—benefit as their human rights infuse with other conventions, standards and norms of treatment.

a map of the nations that have and have not ratified the CRPD
Source: UN Enable

Janet Lord argues that the language utilized in the CRPD reinforces the need to reframe disability as a contribution to society, rather than a hindrance. Pointing to the American Disability Act (ADA) as a stepping-stone to the CRPD creation, she makes a clear delineation that CRPD is not an international version of ADA. “[CRPD] provides a framework for the development of disability rights in countries that is, in large part, inspired by the principles and concepts found in the ADA—nondiscrimination, inclusion, autonomy, human dignity. Like any other human rights treaty, the CRPD seeks to ensure that the human rights to which all are entitle are actually implemented for persons with disabilities.” She hones in on two essential themes of the CRPD: non-discrimination and employment.

First, non-discrimination is all-inclusive as defined in Article 2 and outlined in Article 5. “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 the denial of reasonable accommodation.” Akiko Ito, Chief of the Secretariat for the Convention on the Rights of Persons with Disabilities, insists the need for at least two perspectives, disabled and gendered, when mainstreaming disability as a measure to counter discrimination. Unfortunately, the layers of discrimination are not limited to two perspectives; therefore, it is necessary to include race and/or ethnicity, given the intersectionality of an individual life.

Second, barriers to employment reinforce exclusion and marginalization. While employment barriers differ depending on the disability, the overarching concept lies in accessibility. As an able-bodied person, I take accessibility for granted. Consider how a wheelchair user gets to work if there is not access to a bus, cab, or car that is accessible; or how a visually impaired person gets information from the internet, if there is no voice-over technology. Article 27 of the CRPD challenges and demands the labor market to be “open, inclusive and accessible…by taking appropriate steps” for persons with disabilities to participate and enjoy the right to work. UN Enable reports that there is difficulty in obtaining data on persons with disabilities, specific to employment; however, here some of what we know:

  • In the US, a 2004 survey reported that 35% of persons with disabilities have employment when compared to 78% of the rest of the population.
  • China has an estimated 83 million persons with disability – that is 6.3% of the country’s population
  • In Ireland, 37% of persons 15-64 have a disability and are employed
  • Thailand states that 1.3 million of the 4.8 million persons with disabilities are working age
  • 70% of Russia’s disabled population is unemployed

The rights to employment and non-discrimination fall into the categories of economic and social affairs. While CoSP ensures the practical application of the CRPD on the local level, the Department of Economics and Social Affairs (DESA) advises, develops, and oversees policy creation and the implementation of CRPD on the national level. Ito explains, “DESA works to support the development pillars of the United Nations – peace and security, and human rights.” CRPD and its implementation align with the 1945 UN Charter that seeks to identify progress in economic and social development, and promote human rights through the creation and maintenance of a peaceful and prosperous world.

The role of civil society is imperative in the implementation of the CRPD. Article 33 makes allowance that persons with disabilities and their organizations are involved and participate in the monitoring process; this outlet is CoSP. Civil society participation is uncharted territory as no other human rights treaty acknowledges the advocacy, accountability, and the representation of NGOs. By recognizing the mandates and positions of NGOs within communities and around the globe, CoSP is striving to ensure the full inclusion of persons with disabilities into an accessible and accepting society. To be clear, the implementation process is complex, difficult, and far from over. Fortunately, having persons with disabilities led and dominate discussions, CoSP represents a microcosm of dedicated innovation and a relentless pursuit of excellence as they collaborate to create, maintain, and reframe equal representation of human rights through participation and partnership.

Over the course of this week, the team will share personal experiences and takeaways from this incredible week that included the official launch of the CRPD app and sharing of Making Disability Rights Real in Southeast Asia by Dr. Derrick Cogburn and Dr. Tina Kempin Reuter.