Lift Up, Not Tear Down
Lift Up, Not Tear Down

Categories: Health

Abstract Art by Invisible Disabilities Association Ambassador Michael Quinn

By Guest Blogger Wayne Connell, Founder and President, Invisible Disabilities Association (IDA)

I attended a fundraiser in Denver this past week that supported the Carson J Spencer Foundation. The foundation was formed by Dr. Sally Spencer-Thomas to honor her brother Carson who lived with mental illness and eventually took his own life. Many attendees were impacted by suicide including the host, renowned photographer John Fielder, who lost his son to suicide in 2006. The Carson J Spencer Foundation is making a huge difference in prevention and of providing hope.

Although the evening was about the loss and tragedy of suicide, it was also about the triumph and resilience of the human spirit in the midst of illness and stigma. I was joined for the evening by Jeff Vankooten, one of the Invisible Disabilities Association’s (IDA) board members. Jeff has lived most of his life with bipolar disorder. I shared his thoughts here a few years ago in It’s All In Your Head.

Jeff and I had a great chat with a couple of sisters around one of the cocktail tables. As we talked about the evening events, I had the opportunity to discuss the IDA and why our mission is to help people believe in people. One of the sisters shared that her son was diagnosed with ADD and his friends and teachers oftentimes had misconceptions about the diagnosis and how her son was impacted by it. Her concerns for her son were no different than Jeff’s when he shared about having type II bipolar disorder.

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Why Disability History Matters
Why Disability History Matters

Categories: Civil Rights & Voting, Community Life

Alice Wong

By Guest Blogger Alice Wong, Project Coordinator, Disability Visibility Project

I was 16 when President George H.W. Bush signed the Americans with Disabilities Act (ADA) on July 26, 1990. I can’t remember if I had any particular awareness or excitement about the passage of this landmark piece of legislation. At that time, I had little knowledge of the independent living movement or disability history. In the prehistoric era before social media, I was unconnected to other people with disabilities like myself—it took me a while to become politicized and find ‘my crip tribe.’

As many organizations plan national and local events celebrating the upcoming 25th anniversary of the ADA, I wondered what I could do to highlight the current zeitgeist of the disability experience while honoring the past.

I recently launched the Disability Visibility Project: A Community Partnership with StoryCorps. The project is a year-long grassroots campaign that encourages people with disabilities to record their stories at StoryCorps in celebration of the upcoming 25th anniversary of the ADA in 2015. By tagging their StoryCorps recordings as part of the Disability Visibility Project, participants will have their stories archived in the American Folklife Center at the Library of Congress. Their stories will be searchable by the name of the project.

It’s been a pretty exciting experience so far. The response from the Bay Area disability community has been tremendous. We also have more than 20 media partners comprised of individuals and organizations in the disability community that are helping us with outreach and publicity.

With the 24th anniversary of the ADA coming this Saturday, I had the opportunity to interview one of our media partners, Catherine Kudlick, professor of history and director of the Paul K. Longmore Institute on Disability at San Francisco State University.

Q:  Why are you interested in participating in the Disability Visibility Project?

A:  I’m a big fan of StoryCorps, but I think the disability perspective, especially one grounded in political and cultural awareness needs greater visibility, both for all people with disabilities and for the general public. 

Q:  Who do you plan to record your story with? What are some reasons you are having a conversation with this person?

A:  Georgina Kleege, a writer and English professor at UC Berkeley and I are both “imperfectly blind” academics, so we share similar experiences of being in this funny middle place that not many people acknowledge; for most people, if you call yourself blind you must see nothing or else you’ve got to be a sighted person.  Most people with vision impairments are somewhere between these two places, so Georgina and I have built up a friendship that explores this. It’s really important to talk both with other disabled people, but also with someone who shares a similar disability.  

Q:  Why is disability history important to all Americans, but Americans with disabilities in particular?

A:  History gives us the tools to think about us—whoever that us is—as being part of something bigger; we have a past, which means that we have a present and a future. Because disability has been ignored for so long, it’s important for the general public and people with disabilities to learn that it played an important part, not just because of a few important people who defined a movement, but also for how we think about things like productive labor, our healthcare system, the impact of war and how our nation establishes various hierarchies. By understanding how disabled people are defined by these experiences and often helped define them is tremendously empowering both individually and collectively.

Q:  As a historian, what are the top three books on disability history people should read in light of the 24th anniversary of the ADA?

A:  Kim Nielsen’s A Disability History of the United States. Paul Longmore’s Why I Burned My Book and Other Essays on Disability. Joseph Shapiro’s No Pity remains a classic published in the early 1990s, but I suggest it because it still offers a broad context for people who don’t know much about disability in the U.S. and as an NPR journalist, Shapiro tells good stories. I know that Lennard Davis is completing a book on the history of the ADA, but I have not seen it. 

History gives us a sense of who we are and where we are going. Disability history is so much more than the ‘big names’ familiar to most such as Helen Keller, FDR, Ed Roberts, Judith Heumann and Justin Dart. Organizations like StoryCorps give everyone the opportunity to document their stories, preserving history from the ground up.

The goal of the Disability Visibility Project is simple: “Recording disability history, one story at a time.” Happy 24th Anniversary, ADA!

Alice Wong is a staff research associate at the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability and Rehabilitation Research and the Administration for Community Living. She is also a council member on the National Council on Disability, an independent federal agency. This guest blog post reflects her views alone. You can find her on Twitter: @SFdirewolf

Additional information for the Disability Visibility Project:

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A Day in My Life
A Day in My Life

Categories: My Story

3 Mariah Adaptive Sports - 3By Guest Blogger, Mariah Kilbourne, Ms. Wheelchair America 2013

One year ago my term as Ms. Wheelchair America came to a close. And I am writing this post on the eve of my 26th birthday. As I shared in my first post on, I couldn’t wait for the chance to be here. I made my entrance into the world three months early – a mover and shaker from the get go.

Due to my premature birth, I was diagnosed with a condition called cerebral palsy. Cerebral palsy is a neurological condition that affects everyone differently. I have moderate spastic quadriplegic cerebral palsy. So, both my arms and legs are affected. I primarily use a power wheelchair for mobility, a.k.a. the Beast, and take on each day at eight miles per hour.

In my living room you will find Oprah, People and New Mobility magazines on my end tables. There is my collection of favorite shoes – Nikes, Uggs, Toms – and orthotics are thrown in the mix to be worn occasionally. After all, most who wear them know it is hard to find a pair of stylish tennis shoes that fit over orthotics. On many days style wins over functionality and my feet are sans-orthotics.

I finish getting ready for the day and wait for the paratransit bus. After graduating from Texas Lutheran University with a Bachelor of Arts in Communication Studies, I accepted a full-time position with the City of Seguin, Texas. I work as a specialist in the Economic Development Department. Seguin, Texas is about 35 minutes from my home. On the paratransit service, my rides to and from work can take an hour or more each way. Although several adaptive technological advancements have been made for driving, my reaction time is not fast enough, so paratransit is the way I go. Occasionally, I luck out and have a driver that will play the latest from Ed Sheeran or my Texas country favorites – Aaron Watson or the Bart Crow Band – and the commute will turn into more of a karaoke party on wheels.


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