Join us for our newest blog series Pages with Partners, where Health Forward staff select a book to discuss with a community partner. If you have a book recommendation, fill out the form at the end of this post.
Being Heumann: An Unrepentant Memoir of a Disability Rights Activist
By Judith Heumann and Kristen Joiner
Judith Heumann’s memoir is an engaging account of a lifelong advocate for disability rights. She shares inspiring stories of the decades-long struggle for protections and equity for those with disabilities, including the targeted thoughtful strategies they used to advance their cause as well as the heartfelt dedication and deep relationships forged among advocates. I learned a lot about the movement that I did not know before.
I sat down with Julie DeJean, CEO of The Whole Person, to talk about the book. Julie’s background is in occupational therapy, which is how she got started working with individuals with disabilities. While she understands the importance of that one-on-one therapy, she also knows that people spend so much more time in their communities. That is why the work of The Whole Person is so important.
The Whole Person is an advocacy-driven organization that provides a range of vital services that support individuals with disabilities, such as independent living skills, peer mentoring, employment services, home modification, adaptive sports, and transition services. As a certified Center for Independent Living, The Whole Person is required to retain a staff and board in which at least 51 percent of individuals have a disability.
When Heumann was five years old (in 1953), her mother took her to school to register for kindergarten. They were told she would not be permitted to attend school, since her wheelchair was considered a fire hazard. Her parents were persistent about Judith’s education, which over time included tutoring, home instruction, a special program for children with disabilities, and eventually integrated classes during high school. What challenges related to education do you see now for individuals with disabilities in our community?
Julie: The Whole Person has programs in schools all over Kansas City. We offer to come teach a class about independent living skills, and we often engage with special education classes. While the past year has presented many challenges for school because of COVID, we are now back in schools via Zoom — reaching an even bigger population. We are now in 13 schools in Missouri and eight schools in Kansas. Thinking back to being in school myself, there was an entirely separate building for students with disabilities. Fortunately, lot has changed—we now use IEPs (Individualized Education Plans) to make a plan for their learning. But students with disabilities do still face a lot of stigma. In some ways, I wish every child had an IEP, to normalize the process and be inclusive. Everyone has specific learning needs.
While in college, Heumann describes the way her thinking, and the thinking of her peers with disabilities, changed. They realized it should not be a matter of the students figuring out how to navigate a world that was not designed for them, nor should they be expected to hide or fix their disabilities. Instead, they “were beginning to see our lack of access as a problem with society instead of an individual problem.” Because a disability could affect any one of us at any time, society should take those realities into account. Where do we, as a society, still need to grow to make our communities more accessible and to frame disability as a normal part of life?
Julie: Last year was the 30th anniversary of the passage of the ADA. While the work is not yet done, we have made a lot of progress that we should be proud of. One of the big challenges we still face is older buildings. Retrofitting is an important investment, but it can be expensive and slow. We need to continue our efforts to make sure all buildings are accessible.
Heumann became a visible advocate in 1970, at the age of 22, when she sued New York City. The board of education refused to issue her a teaching license because she used a wheelchair. The case was ultimately ruled in her favor, and she taught elementary school for several years and opened the door for other people with disabilities to become teachers. More individuals with disabilities are earning undergraduate and graduate degrees, but the rate of unemployment for people with disabilities is still much higher than it is for people who do not have disabilities. What steps should businesses and organizations take to be more inclusive and accessible for individuals with disabilities?
Julie: Disability:IN is a great resource for businesses. The Whole Person is active with this national organization that helps businesses employ individuals with disabilities. Many large employers in town have staff engaged with Disability:IN’s Kansas City chapter. They will give you the education and support on how to make it work for your business.
Heumann advocated for Section 504, which protected the rights of individuals in programs that receive federal funding, and then for the Americans with Disabilities Act, which more widely prohibited discrimination based on disability. The ADA became law in 1990. What are the most significant policy issues today at the local, regional, state, or national level?
Julie: The two big areas we focus on at The Whole Person are housing and transportation. There is still a lot of room to improve locally in those areas. It’s complex, since it is not a one-size-fits-all approach. For example, the needs of someone with low vision are different than the needs of someone with a mobility issue.
We partner with MARC to address transportation needs. Our bus system and the streetcar are a huge help, but there are still gaps that we need to fix. Rideshare services are accessible for many folks, which is helpful. But this will not be accessible in more rural areas. The challenges are different in rural communities where we work, like in Clay, Cass, Platte, and Leavenworth counties.
The Whole Person has a full-time team member working on housing policy and advocacy. Like transportation, there is a wide range of potential accommodations needed to meet individual needs. With housing, we find that we often have to advocate for a person’s individual needs in their housing situation.