ADA – UAB Institute for Human Rights Blog

World Diabetes Day

World Diabetes Day is recognized globally on November 14^th. It’s important to recognize the progress we’ve made in managing diabetes. In the past, a diagnosis of diabetes was devastating in many ways: type I and insulin-dependent type II diabetes were often fatal until the discovery of insulin in 1921; gestational diabetes drastically worsened pregnancy outcomes for women and their babies; and other types of type II diabetes resulted in severe complications. Diabetes now has become known as a serious, but treatable, disease. While medically we’ve come a long way with the treatment of diabetes, there are still improvements that need to be made in relation to the social treatment.

Despite the great strides made in the medical community in regard to diabetes, people with diabetes still face hardships and discrimination in the workplace, the classroom, and in the health sector. Many people with diabetes need accommodations in the workplace that are protected by the Americans with Disabilities Act (ADA). For example, many people with diabetes have rapid drops or spikes in blood sugar—hypoglycemia and hyperglycemia, respectively—and they need to take time to remedy it. If an employer does not accommodate these needs, they are in direct violation of the ADA. There are exceptions, such as when hyperglycemia, hypoglycemia, or the breaks make the employee unable to do the essential function of the job. However, in many workplaces, these breaks are possible.

Kristine Rednour was hired as a reserve paramedic for the Wayne Township Fire Department (WTFD). When she was hired, she let the WTFD know that she had type I diabetes. She was promoted to full time, and during work had two hypoglycemic episodes within the same year, which affected her ability to respond as a paramedic. She was put on paid leave, during which she was required to have the medical director clear her. He cleared her for restricted duties and with workplace accommodations, which the WTFD refused to put in place and instead fired her. She sued the WTFD for violating the ADA and won. This is just one of many examples of workplace discrimination that people with diabetes face.

The ADA also protects children at school that have disabilities, including diabetes. However, like with employment discrimination, discrimination at school still occurs. Schools that receive federal funding are required to be able to make accommodations for students with diabetes, such as allowing them to have snacks and having staff that is qualified to administer care.

Some schools don’t offer these accommodations, especially the latter, which can put children at risk for life-threatening medical complications. Some schools even tell parents that their children will not receive medical assistance from staff even if the complications have become so severe that they are unconscious. Often, parents have to put their jobs on hold to be able to make trips to school to check on their children, potentially placing them under increased financial strain.

Blood Glucose Monitors can send blood sugar levels to an app that the child can download and have more immediate updates on their blood sugar. For some children with severe type I diabetes, they can find out life-saving information about what would otherwise be a severe drop in blood sugar. However, many schools are unwilling to accommodate students by letting those with diabetes access their phones or the Wi-Fi, which puts them at risk for missing a life-threatening drop in blood sugar.

Some children have been denied entrance into schools because they have diabetes, which violates the ADA if the school receives federal funding. Many students are sent to schools that they are not zoned for because the schools closest to where they live do not have staff trained to take care of them, despite the requirement of this accommodation. This means that parents have to drive their students to a school farther away, potentially disrupting their ability to get to work. Some schools participate in this type of discrimination knowingly, while others do not understand enough about diabetes or the ADA. Regardless, denying entry into a school because of a disability is a direct violation of the ADA.

Due not only to the discrimination those with diabetes face, but also the stress and anxiety of not knowing when they’ll have a drop or spike in blood pressure, people with diabetes often suffer from worsened mental health, which according to many sources, including the UN, is a human right. This lessened mental health takes many forms: people with diabetes are two to three times more likely to suffer from depression; diabetes distress can occur when a person with diabetes feels controlled by their illness instead of the other way around; and when physical health gets worse, mental health often follows. It is important for people with diabetes to know they can seek medical attention for their mental health as well as their physical health.

The final place people with diabetes face a violation of their human rights is in the healthcare setting. Healthcare is expensive even without taking into account chronic diseases, especially medication. Insulin is a relatively cheap and easy medication to make. In the 1990s, a one month supply was less than $50, whereas now it’s upwards of $200, which is not accounted for by inflation. For people without insurance, or those that are underinsured, this can put a huge financial burden. This has led to people with insulin-dependent diabetes to ration their insulin, which can lead to death. For example, a nurse, who knew how to manage her diabetes, was found dead due to not using enough insulin. For people with insulin-dependent diabetes, insulin is a human right, which is being denied to many by the sharp increase in prices.

People with diabetes now are able to live happy and healthy lives, especially compared to a hundred years ago. However, they are still set back due to discrimination and human rights violations. It is important as a society to work towards removing the barriers that people with diabetes, among other disabilities, face so that they have access to health, both mental and physical.

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 21^st century.

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

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 21^st 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.