Jennifer Keelan was 6 years old when she participated in her first disability rights protest. After that she participated in a protest every six months! At age 7 she was taken into custody during a protest in Montreal, and at age 8 she became an iconic symbol of the disability rights movement when she insisted on leaving her wheelchair behind to participate in the famous Capitol Crawl. This demonstration is considered the final act that led to the passage of the Americans with Disabilities Act. Jennifer, along with many other adult advocates and historic figures in the disability rights movement, demonstrated to politicians, citizens, and the world that people with disabilities deserve the same human rights and access to society as everyone else. The following website includes some ADA history and a famous video about the Capitol Crawl which features Jennifer: http://www.historybyzim.com/2013/09/capitol-crawl-americans-with-disabilities-act-of-1990/
It was a few years ago that I first saw footage of Jennifer crawling up the Capitol steps. I was moved to see a such a young child passionately advocating for her civil rights, particularly since she had CP, the same condition as my daughter Maya. So, when the ADA Legacy tour bus came through our local city this summer I was thrilled to see a large photo of Jennifer that documented this bit of history that I could share with my daughter, now the same age as Jennifer when she participated in this protest. Maya’s face lit up when she saw it and she said, “Mom, she has CP like me?!!”. Since Maya is also a young, outspoken self-advocate she immediately identified with Jennifer and I could see how empowered she felt after hearing Jennifer’s story and seeing this image. While I was sharing this moment with Maya, the photographer of this iconic photo, who also happens to be Jennifer’s cousin, Tom Olin, overheard me and asked if we would like to speak with her! One thing led to another and shortly after meeting Tom, I found myself on the phone with Jennifer and her mom Cyndi, her fulltime caregiver.
We spoke again a few days ago and they allowed me to interview them to honor the 25th Anniversary of the passage of the ADA. It was a surreal experience and immense honor to speak with Jennifer and Cyndi Keelan who are tremendously humble about their participation in the disability rights movement and referred to themselves as “merely soldiers.” I was on the edge of my seat hearing their stories and, at times, I was so discouraged and shocked by their family’s current struggles with affordable and accessible housing that I wanted to shake the world and demand an explanation. I was naive to think that 25 years later their story would demonstrate how far we have come in the disability rights movement. Certainly in some respects we have come far, but their experience also speaks to how critical it is that advocacy and awareness continue. The laws that Jennifer and our other historic advocacy leaders have fought for must repeatedly be refreshed with new life and breath, and sometimes this means taking a public stand. Jennifer and Cyndi have found it’s about time for them to do it again.
Getting involved in the ADA movement “We found out Jennifer had cerebral palsy when she was 2 years old and were told to put her in a home or put her up for adoption,” Cyndi told me. At the time they were living in Arizona, and because of the lack of services and support in their small town, the professionals at Shriner’s said, “We can’t cure her and it’s <caring for her at home> not worth it.” Cyndi recalled that day vividly, “Jennifer’s grandfather, who was with us at the time, said, ‘Oh, bullshit, we aren’t putting her in a home!’ After that day grandpa would put Jennifer on their family’s horse in her t-shirt and diaper for her daily therapy.” After Shriner’s diagnosed Jennifer with CP, Cyndi spoke with her cousin Tommy Olin (he refers to Jennifer as his niece) who had been working as a photographer for disability rights activist Diane Coleman. Tommy, who would become the visual historian of the disability rights movement (and is the current ADA Legacy Tour bus driver), connected the family to the efforts of ADAPT, the disability rights organization founded by Wade Blank a former orderly and assistant administrator at a Denver nursing home. ADAPT became one of the central forces of the disability rights movement. Jennifer joined them for her first protest in Phoenix, Arizona when she was just 6 years old. Jennifer said, “It was pretty cool. A bunch of people in wheelchairs (like herself) fighting for their rights.” It was the first time she said she saw people with disabilities empowering themselves. She wanted to be a part of it.
It was during this time, 1988, that Jennifer first experienced discrimination. She went out to a restaurant with the members of ADAPT and they were refused service because, as the restaurant staff told them, “People don’t want to watch you all eat.” This sparked a passion in her and was the reason she personally got involved in the movement. “I wanted to be able to go into a restaurant and eat and/or go into a public place and eat.” Jennifer said she saw this as an opportunity not just for herself but for other kids.
When it came to participating in the Capitol Crawl, many of the adult advocates tried to discourage Jennifer’s participation and were concerned about having a child reinforce the image of people with disabilities as childlike. Jennifer said she had to do it and that she wanted to do it for herself, her friend who died a few months earlier, and for the future. She said she wanted to represent her generation. ADAPT founder Wade Blank encouraged Jennifer to follower her heart. At that point Cyndi said that Wade pulled Cyndi away to leave Jennifer to participate.
After the Capitol Crawl, Jennifer and Cyndi helped write the original ADA law, each contributing significantly to the final product. Cyndi wanted to ensure that daycare centers, even if they were not federally funded, could not discriminate against children with disabilities. She also wanted to protect the rights of parent caregivers and asked that they not be penalized or forced to put a family member into an institution to keep their job. Jennifer wanted to make sure she could ride the same bus as her younger sister. “I wanted to be on the bus, and the same bus as my little sister!”
In October of 1990 Jennifer received The “Americans with Disabilities Act Award” for her outstanding contributions to the enactment of the world’s first comprehensive civil rights law for people with disabilities.
After the ADA The passage of the ADA has not solved all of Jennifer and Cyndi’s problems. According to Jennifer, “In some ways we have made a lot of progress but we have also have had a lot of setbacks, gone backwards a bit. People with disabilities do have a lot more physical access; it’s illegal to refuse service to someone because they are disabled.” She believes in some ways we’ve gone “backward as far as housing and maintaining physical access. I often see new construction missing access and not following ADA specifications.”
We have seen this too!
Over the last two years Jennifer and Cyndi have even experienced bouts of homelessness, periodically staying in hotels because of a shortage of accessible and affordable housing in the Denver/Boulder Colorado area where they have lived for 25 years. Many places that are identified as “accessible” still have barriers despite the existing laws. In fact, one apartment community told Jennifer that they would not rent to her if she could not get out of her chair and climb up the steps to the building! Ironically Wade Blank and ADAPT started their disability rights movement in Denver decades earlier and was the reason Jennifer and her mom came to live there. Jennifer and Cyndi are now living in a place offering federally subsidized housing, a place that, because of their federal subsidy, are supposed to be particularly in tune with the needs of people with disabilities and the laws that support them. Instead they have repeatedly had to fight there and in previous housing communities just to have simple accommodations which should have already been in place (i.e having grab bars installed in the bathroom).
Cyndi Keelan wonders if some of these issues have arisen due to the natural focus of investment groups who are often involved in purchasing low income housing for profit-making. At least at their current location Cyndi and Jennifer do not believe their property management group is focused on meeting their needs, even if those needs have been written into law. As Cyndi says, “It’s 25 years later and avoiding ADA law isn’t ignorance, it’s arrogance.” They also report being bullied by some of their current neighbors and the property manager for being disabled. As Cyndi says, “We are still climbing those steps.”—a reference to the Capital Crawl from 25 years earlier.
It was very hard for me to hear these details and believe this kind of discrimination continues. Jennifer and Cyndi have been speaking with local advocacy organizations and leaders and, after filing complaints with the Office of Civil Rights and the Department of Justice, Jennifer spoke out about housing issues at a local ADA event yesterday. Both mother and daughter believe, “We need to educate and reeducate key officials at HUD and Medicaid about fair housing laws, ADA, the Olmstead and Melville Acts.” These are the laws that were established to prevent the kinds of things from happening to Jennifer (and many others) that are still occurring today. And despite the laws that have been established to protect and uphold the rights of people with disabilities Jennifer wisely points out, “You have to demand your rights even if it’s written in law.” At this local event Jennifer was able to speak directly with the lieutenant governor of Colorado Joe Garcia and will be meeting again with him next week. While battling discrimination on the disability front, Jennifer continues to pursue an education. She is a senior at Arizona State University online and wants to be a pediatric occupational therapist. Her main goal is to finish her Bachelor’s degree and get in to Arizona school of health for occupational therapy. She wants to work with kids with disabilities, with a particular focus on bringing assistive technology into the classroom to support the kids who need it. Jennifer still sees struggles for kids with disabilities in the school system, particularly getting access to the technology they need to succeed. She worked independently to get her GED because her high school would only offer her a certificate of attendance after placing her in a special education classroom solely because of having an orthopedic handicap. But Jennifer’s capabilities far exceeded what her educators and the school system recognized. As a special education student Jennifer was only taught up to 4th grade level math but once she left high school she advanced to college level math in only one year!
Thank you Jennifer and Cyndi. Thank you for your courage, and determination. By joining the fight to formally secure and honor the rights of all people who have disabilities you and the many other fierce advocates of the disability civil rights movement have offered my daughter and many others the chance for a better life.
More on the history of the disability rights movement: “Lives Worth Living” A fantastic documentary film about the disability rights movement
More from Jennifer Keelan From “It’s Our Story” Project–A national initiative to make disability history public and accessible; “we’ve collected over 1,300 video interviews from disability leaders across the country since 2005. Now, we’re making this critical aspect of American history public, accessible and interactive”: