Perspective allows me to appreciate moments from the Independent Living Movement that have affected the life that I have been able to live in the 21st century. People often take for granted the struggles others went through to ensure rights we have today. I have been guilty of this many times throughout my life; it is only with awareness of what the IL Movement has done for people with spinal cord injury/disease and all disabilities that has brought me to where I can see what needs to be celebrated and what more there is to do.
Independent Living Philosophy 101
The foundations of Independent Living as a mindset, which rolled into a movement in the first half of the 20th century, are that people with disabilities should have:
- the same rights, options, choices, and access to equitable opportunities as anyone else
- the choice of living in the community
- the right to choose for themselves and to have equitable rights alongside able-bodied peers
There are many other things to understand about the Independent Living philosophy—within society, as well as for those with disabilities; however, for the purposes of my individual story, these are the three that I will focus on.
Grown from Necessity: Equitable Opportunities
My introduction to the world as a full-time wheelchair user was also my first day of high school. I remember rolling through the halls that first day; those nauseatingly bright hallways with conspiring couples and riotous groups. I could not ignore the barriers to my new existence as I rolled along. Slowly, another restriction revealed itself; the students and teachers hushed as their eyes caught me.
Each group began to whisper about what now, apparently, was the most important thing about me. I was different, and that was saying something in the public school petri dish of labels. The necessity for me to advocate for equal treatment and opportunities for myself had begun.
So too did the seeds that would years later bloom into the IL Movement come from necessity. Injured World War II veterans were entering a world that was not designed for them. These veterans were on the front lines advocating for physical accessibility and advances in medical care, but also among the first to bring awareness to discrimination in federal programs and the need for support. The Paralyzed Veterans of America was founded by a group of veterans with spinal cord injuries in 1946 after returning to the United States. PVA has fought ever since for medical research, rehabilitative support, civil rights, and quality of life opportunities for veterans and those with physical disabilities.
Just as I had, these men realized that the barriers they now faced were from society and perception, as well as from the physical structure of buildings and the construction of opportunities. PVA’s mission–a mission carried out by MPVA in Michigan–is to empower veterans to return home to what they had thought for–freedom and independence. I understand the daily battle between the constructs of society and the effort to remain myself. The IL Movement has been engaging in the battle to advocate for all Americans with disabilities so that they may experience life independent of someone telling them what they can and cannot do.
Choices Bloom from Education: Living in the Community
The man widely known to be the Father of the Independent Living Movement is Ed Roberts (January 23, 1939-March 14, 1995). Roberts contracted polio at age 14 and spent 18 months in the hospital before returning home to live his life paralyzed from the neck down. While not giving up on life, it was unclear how he would pursue the dreams that he had from his new position in life.
He finished high school by attending through telephone communication with his mother. When an administrator sought to deny him a diploma because of not completing physical education requirements, his role as an advocate began.
My own role as an advocate began in high school when I was told I could not have a key to the elevator. The key would have given me independent access to half of my classes. I remember being astonished that I was denied something that would aid my education because of a physical limitation; something that had no bearing on my ability to learn.
I can still hear the administrator saying, “If we give you a key, then we will have to give everyone a key who needs to use that elevator because of crutches or any temporary physical ailment.”
My response is seared alongside that memory; “Well, if a football player comes to you expecting ownership of an elevator key because he injured his knee scoring the winning touchdown at the homecoming game, you can go ahead and direct him to me and I will explain why I own a key and he does not.”
Roberts’ self-advocacy had ignited a fight within him, just as it had in me decades later. He knew what he was capable of and would not let other people dictate his options.
When he decided to apply to UC Berkeley, he was told by collegiate powers that be “We’ve tried cripples before, and it didn’t work.”; in their minds, it would be impossible for him to live on campus and attend classes along with able-bodied peers.
Even a vocational rehabilitation counselor thought he was “too severely disabled” to ever work.
Usually when people tell a person with a disability, “You can’t do it!”
They respond, “Watch me”.
Roberts was admitted to the University of California Berkeley in 1962. He was followed by many other wheelchair users with severe disabilities that called themselves “The Rolling Quads ”.
Like Ed Roberts, I advocated.
- for accessibility in the theatre department so that individuals using wheelchairs could pursue being thespians or stagecraft
- for more accessible dorm rooms in every apartment on campus
- for equality in opportunities, like castings and internships
- In so many ways, Ed Roberts and his fight for the Rolling Quads set me up to be able to advocate in my century. To have the choice to live in the community where I choose with the supports that I need, is an essential human right that I claim for myself and for all people with disabilities.
The Effort for Self-Determination
As the 20th century wound down, advocates across the US knew the best road to equality for citizens with disabilities was powerful legislation. This legislation would set a standard for rights and anti-discrimination in work, public policy, education, and more.
Led by advocates like Ed Roberts, Judy Heumann, and Justin Dart Jr., advocacy began around what would become the Americans with Disabilities Act of 1990.
Perhaps the key moment in the fight for the ADA was on March 12, 1990. The “Capitol Crawl” consisted of over 60 individuals with physical disabilities, the majority of which were wheelchair users, crawling up the steps of the US Capitol in Washington, DC.
These advocates put themselves on the line to make it known that people with disabilities were here to stay and willing to fight for equal rights.
One of the most inspiring pictures I have ever seen is that of 8 year old Jennifer Keelan crawling up the steps of the Capitol building and declaring “I’ll take all night if I have to!”
This young woman epitomized the importance of advocating for what we know is right for ourselves and for others in our community, and she showed for that message. Pres. George Bush signed the act into law on July 26, 1990 and said at the signing ceremony “Let the shameful wall of exclusion finally come tumbling.”
Advocacy, Advocacy, Advocacy
As I learned in my own life, there is still so much more to do:
- mindsets that need to be changed
- accessibility that needs to be updated
- opportunities that need to be equitably provided.
- As people like Ed Roberts and young Jennifer Keelan have shown, the disability community must show up and advocate for change.
- I am proud to lend my voice and pen to such amazing disability organizations like the Michigan Paralyzed Veterans of America, that are doing amazing work to get things right the first time and empower your experience to roll the roads.
Sources:
https://www.independentliving.org/docs5/ILhistory.html
Independent Living History
https://share.America.gov/crawling-up-steps-demand-their-rights/
MPVA Blog 
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