We all have something to give, and having a disability doesn’t change that. Disability Pride Month, which occurs every July, is a time to celebrate the value that people with disabilities (26% of adults in the United States) bring to society and to honor their achievements and contributions. It’s an opportunity to shout from the rooftops that people with disabilities should take up space, be visible, and be heard.
We celebrate in July because on July 26, 1990, the Americans with Disabilities Act (ADA) was signed into law. This landmark legislation prohibited discrimination towards persons with disabilities in the workplace, school, transportation services, and several other public spaces. This month we wanted to share some of the stories of the activists who fought for the passage of this legislation and reflect on the work that still needs to occur to make our society more inclusive.
You cannot talk about the disability rights movement without talking about the recently departed Judy Heumann, the “mother” of the disability rights movement. Heumann was born in 1947 in Brooklyn, NY. At 18 months old she contracted polio which required her to use a wheelchair. Heumann’s wheelchair was deemed a “fire hazard” at her school and she was denied the right to attend at only 5 years old. Later, as an adult, the same school district denied her a teaching license despite passing all her exams because of her disability. Heumann sued and won her case against the New York Board of Education, becoming the first person in a wheelchair to teach in NY.
Heumann’s early life experiences lit a fire within her that empowered her to fight for the rights of people with disabilities. Heumann held a belief that may still seem surprising to many: She did not believe her disability held her back, but rather, society’s exclusion as a result of her disability was the main obstacle in life.
Heumann stated, “Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for example. It is not a tragedy to me that I’m living in a wheelchair.”
Heumann fought tirelessly for disability rights, and her list of accomplishments is long. Included in that list is her leadership during the historic 504 Sit-In in San Francisco; her contributions to the development & implementation of Individuals with Disabilities Education Act; Americans with Disabilities Act; and UN Convention on the Rights of Persons with Disabilities. She served during the Clinton Administration as Assistant Secretary for Office of Special Education & Rehabilitative Services in the Department of Education, and as the first Special Advisor for International Disability Rights during the Obama administration. She was a founding member of the Berkeley Center for Independent Living (first grassroots center in the US), co-founded the World Institute on Disability with Ed Roberts & Joan Leon (one of the first global disability rights organizations founded and led by people with disabilities
Lisa Carl went to the movie theatre on May 28, 1988, and was denied entry simply because she was a wheelchair user. Carl, who was born with cerebral palsy, just wanted to watch a movie like everyone else, but at the time, it was perfectly legal for the manager to discriminate against her for her disability. The manager proudly stated, “I don’t want her in here, and I don’t have to let her in.”
Carl later testified in congress about her experience and because of Carl’s bravery speaking up, President George Bush accredited Lisa at the signing of the ADA in 1990 stating, “These provisions mean so much to so many. To one brave girl in particular, they will mean the world. Lisa Carl, a young Washington State woman with cerebral palsy, who I’m told is with us today, now will always be admitted to her hometown theater. Lisa, you might not have been welcome at your theater, but I’ll tell you — welcome to the White House. We’re glad you’re here.”
Carl’s testimony encouraged millions of other Americans to use their voices to share their discriminatory experiences and enact change, which they ultimately accomplished through the passing of the ADA, a critical step taken towards improving the lives of millions of Americans with disabilities.
Justin Dart, Jr., dubbed the “father” of the ADA, was born in 1930 to a prominent Chicago family, and had a typical childhood until he turned 18, when he contracted polio and became a wheelchair user. After receiving recieving care in the hospital, he became inspired to lead a life of purpose. He stated, “I found my truth in advocating a united, loving society with justice for all.” At that moment, he dedicated his life to fighting inequality.
In the early 1980s Dart was a member and eventually chair of the Texas Governor’s Committee for Persons with Disabilities, and in 1981, President Reagan chose Dart to be vice-chair of the National Council on Disability.
It was then that Dart and Yoshiko (Justin’s wife) began a national tour to gather stories from individuals with disabilities (they did two rounds of the tour all of this at their own expense) with other activists and began working towards creating and enacting the ADA. Dart was at President George H.W. Bush’s side on the White House Lawn when the ADA was signed into law.
After graduating from Beloit College with a degree in Sociology and then attaining a Nursing degree from Rush University, Bristo became a registered nurse with dreams to become a midwife. However, in 1977 when Bristo was 23, an accident left her paralyzed from the chest down. Bristo quickly grew tired of the way people treated her and the way she witnessed others like herself be treated, and began her involvement in the Disability Rights Movement. Only three years after her accident, she founded Access Living in Chicago, a non-profit that advocates for legislation and policies that ensure fair housing, accessible transportation, and other resources for people with disabilities. This program became a national model and helped lead to the ADA.
Among her many notable contributions, Bristo also founded the National Council on Independent Living, was nominated by President Clinton as Chair of the National Council on Disability and was elected to be President of the U.S. International Council on Disabilities.
Like many of the activists on this list, Bristo believed that it was society that needed to change and become more inclusive of all its citizens, not the other way around. She once said, “Instead of looking at my wheelchair as being too wide for the bathroom, I now look at the doors of the bathroom as too narrow for my chair.”
At 2-years –old, Jennifer Keelan-Chaffins was diagnosed with cerebral palsy, requiring her to use a wheelchair. For some time, this accommodation forced Keelan-Chaffins to lead a different life than she wished to (for example, she had to take certain classes that she did not want to take, simply because those classes were more accessible for someone using a wheelchair). Keelan-Chaffins decided to take action so her disability would no longer be something that would negatively impact her life.
At only age 8, she joined other disability rights activists in Washington D.C. in March 1990 to march from the White House to the Capitol building, and from there they removed all their mobility aids to ascend the Capitol steps in an effort to compel congress to immediately pass the ADA. This became known as the “Capitol Crawl.” Young Jennifer was advised not to climb, as that climb would be extremely difficult and strenuous for someone with her condition, yet she chose to climb regardless.
Keelan-Chaffins stated, “Doing the Capitol Crawl—it wasn’t just to proclaim my rights, but it was also to proclaim [the rights of] my generation and future generations of kids with disabilities.”
Pictures of her climb quickly spread and became an iconic representation of the fight for disability rights.
Keelan-Chaffins has continued her disability rights work ever since and graduated from Arizona State University with a Bachelor of Science in Family and Human Development in 2017. Her main motivation? She says, “I just want to be treated like a human being.”
The passage of the ADA was just the beginning of the fight for disability rights. Activists are working tirelessly to stop ableism, to make our world more accessible, to end discrimination, and to improve access to and quality of care. People with disabilities deserve to be welcomed in all spheres of life, from school to the workplace, to public transport. And right now, that is often not the case.
Here at HHAeXchange, we advocate for everyone’s right to live a life of dignity and independence, and in order for that to happen, people with disabilities who require care services should be able to access quality care at home. As our friends from Voices of Independence, a Center for Independent Living, stated so eloquently, “Living well means embracing concepts like self-determination, choice, integration, freedom from barriers, and dignity of risk. It’s having the same opportunity as a person without a disability to pursue one’s own destiny. Only you know what you want to do with your life.”
The activists noted here have worked tirelessly to ensure that persons with disabilities be treated fairly out in the world, and it’s part of our job at HHAeXchange to ensure those same persons are not only treated fairly in the world, but also in their homes. Request a demo to learn more about how our homecare software can help your agency deliver the best possible care to your members.
For more information on how to improve inclusivity, check out the 10 Ways to Make Society More Inclusive for People with Disabilities.
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