Welcome to the Revolution
September 24, 1994 marked my inception into the world of disability. My first taste of a different way of being. Little did I know or understand about the struggle of people with disabilities, souls eclipsed by passing fates. Newly injured it was October of 95 I left the private comfort of my parents' home to move to Options Cottage a newly formed transitional living facility in Warm Springs, Ga., a program recently underway at the Roosevelt Warm Springs Institute for Rehabilitation. The program specializes in offering persons with high level disabilities like myself a chance to explore and adapt to activities of daily living which encourages the development of independent living skills. While at the cottage my counselor Mike Means introduced me to a book called "No Pity" by Joseph P. Shapiro. Also spending time watching movies such as Billy Golphus' documentary "When Billy Broke His Head and Other Tales of Wonder", it was then that I started to grasp the scope of challenges facing people with disabilities and the struggles we each must face in our day to day living. Not only must people with disabilities fight a system that inherently expects them to fail but so too are they constantly confronted by a belief which holds them as less than human. During the holocaust years of the Nazi regimes reign over the German people, propaganda films were made called Existence Without Life. These warped documentaries called for the mercy killing of all individuals with any kind of disability It was deemed economically sound and humanly kind to exterminate these poor wretched souls challenged with impossible fates. For years the Nazi regime had been systematically sterilizing people with disabilities in order to wipe clean the gene pool of Nazi Germany. Though extreme in their thought, this kind of warped mentally exists today even in our so called high society.
Even now it is an accepted belief and expectation for people with disabilities to lock themselves away in the darker recesses of society, being ashamed or embarrassed by conditions neither imposed nor chosen to bear. Society deems people with disabilities less worthy of life and project them as objects of pity such as Jerry Lewis' model poster child. In fact, the key phrase associated with persons of disabilities is handicap. Handicap, though synonymous with disability, was coined after street beggars not necessarily with disabilities. It was in there begging that they removed there caps with their hands extending them for hand-outs, thus handi-cap. Even in our country today, our government would rather spend 40 to 80,000 dollars a year in support of nursing home institutions which only warehouse people with disabilies who may be perfectly healthy in a house of death. The conditions facing people of disabilities is still grim though looking better. It was only recently that children with disabilites with the passing of Section 504 were guaranteed a public education and only recently that discrimination outlawed towards all people of disabilities. It is these beliefs of helplessness and pity that must change and it is we the disabled community which must change it. The trick is how.
Until recently people with high level disabilities were deemed unfit for even the funding set aside by state and federal governments to provide aid to people going through the great transition into life with a disability. Ed Roberts was the first quadraplegic to take on any state government to be found worthy of assistive aid so that he could go to college. Until this time all aid set aside was funneled out to paraplegics who were more likely to provide return on an investment in their future. After much deliberation, Ed was granted the oppurtunity to go to school and became the first person with a disability to attend the University of California at Berkley. The college protested that it would be to expensive to equip the campus for Ed. But after they looked into it, they found it to be only of mild expense. Following his lead, others signed on to attend college in the following quarter. It was 1967, Ed Roberts and the Rolling Quads brought public attention to the necessary changes needed by people with disabilities. They were the first to bring curb cuts into being and Berkley bacame the first city in America to have curb cuts planned into its layout. They also established the first ever Center for Independent Living in 1972 and were granted $50,000 dollars from the State of California which later became a model for other states and other centers. They, also, became the first advocacy group for people of disabilities and soon after the disabled community began protesting and demonstrating for basic civil rights, staging sit-ins, and taking over government offices to bring awareness to the various issues important to them. In triumph after finishing college, Ed was appointed head of the California State Agency which had denied him funding earlier.
Similiar protests and acts of civil disbedience brought about the signing of Section 504 in 1977 which guarantees under law the right of a child with a disability to public education and the ADA in 1990 which not only forces all government and state buildings to be accessible, but outlaws discrimination towards a person solely because of disability. Advocacy having become a loud and viable issue within the community, ADAPT, a grass roots, down to earth, get shit done kind of group was formulated in Denver, Colorado to assess the public transportation issues of the city. Having hard-pressed the city about the issue , they found themselves running from one obstacle to another playing out the beauracratic bullshit drama of redtape and political doublespeak that so plagues or government processes. After wearing patience thin trying to do things the proper professional government way, pissed-off, a gang of nineteen ADAPT representatives started an impromptu protest to bring media attention to an issue they deemed important, that being the move to equip public transit with lifts for wheel chair users. ADAPT which at that time meant American Disable for Accessible Public Transportation appointed themselves an advocacy organization for people with disabilites when they began finding jobs for many of their clientele, yet these people were unable to get to their jobs because of lack of accessible transportation. So in the moment fired-up and burning with anger they flung themselves down out of their chairs and disrupted in their own way the system which to them represented a fallacy of the so called American democratic republic. It was still we the people. So for 36 hours they lay in front of two public buses preventing them any movement at all. The media baited, covered the story of their inquisition with delighted heart. TThe mayor put on the spot and called to make word declared silently and publicly that nobody in a wheelchair was to be locked up or forcibly restrained. That was the year of the wheelchair riots 1972 when all people of disability acknowledged their right to rape, pillage, and plunder then placing the whole city in seige declaring total anarchy. The army was called in soon after to detain the crazed rollers laying waste to all in sight. Every daughter of every able-bodied family stressed and strapped with tension, it was finally decided to use nuclear weapons and thereby quell the riots. Not exactly the truth their was a positive result from their campaign. Within a year every bus in Denver was accessible to people using wheelchairs. So commented Mark Johnson an ADAPT activist from Atlanta, "Black people fought for the right to ride in the front of the bus. We're fighting for the right to get on the bus."
It is in civil disobedience and outspoken advocacy that change has and will be created. ADAPT's new focus is trying to get Congress to redirect funds away from nursing homes into community based personal assistant programs. ADAPT which now means American Disabled for Attendant Programs Today claims "Currently 1.6 million people are warehoused in nursing homes at a cost of over $60 billion annually, although the cost of community-based services is about a quarter of the cost of institutional services." There should be attention directed into alternatives for Medicaid/Medicare spending especially with the dilemma of the current system. "Most federal funding is directed to institutions and nursing homes, and that discourages states from setting up community programs, complains Dennis Harkins of Wisconsin's developmental disabilities office. In Wisconsin alone, two-thirds of such monies serves 5,500 residents of nursing homes and institutions, while a third pays for 25,000 people in community programs."
Not only do nursing homes stifle a person's independence but often will cloud a person's will to live. Absent are the "patients" ability to choose when to get up, when to eat, when to sleep, what to do, and for people that are disabled and yet perfectly healthy such places are at best a horrid experience. Like David, 32 years old, currently locked up in a nursing home and has been there for nine years, often times weeks or months will go by with David not going outside or even getting out of bed. Though he will get up sometimes to work on stories and poems that he types with his mouthstick on the computer, he mostly chooses not to. I asked him why he doesn't get out of bed and he told me "This place is depressing." He says he would like to be out in the community but has little hope of it becoming a reality. There has to be a solution for the thousands probably millions in his same predicament.
I myself am indebted to ADAPT for the instillment of AmeriCorps. Another strange tale of of civil disobedience, it was years ago when ADAPT took over a presidential campaign headquarter in San Francisco refusing to leave until someone of authority came to hear their statements of protest or in other words until they were heard and promises were made. Clinton being out of town sent his best man to give ear to the demonstrators playing havoc back home. His aide came out to scope out their demands, then sent word to Clinton about their concerns, and any ideas on respectable measures to settle their grievances. "Clinton endorsed the disability movement's insistence on 'maximum control' over the personal assitant they recieve and pledged to reconsider federal regulations and funding that create a 'presumption in favor of institutionalized care over home and community based services.'" When Clinton came to office he installed a program called AmeriCorps which gave me this oppurtunity to go to school at Mercer University and work myself to become a voice for people with disabilities as a person with a disability. But with Clinton battling congress over medicaid reform there is chance that AmeriCorps will be cut from the budget as well as other Medicaid/Medicare benefits. So where does that leave those of us who will be affected by these proposed cuts? It should enflame us to gather with others of like circumstances and in numbers give power to our grievances. How many classes of people in America feel oppressed? Who better to understand oppression than somebody with a disability. All of America knows changes are needed. With the growing number of disabled individuals within this country, each with a string of family and friends touched by their plight, is it ridiculous for us to believe the people have no power to effect change into congressional policy? It is my knowing that we could if we choose elect individuals with disabilities into congress to give even more power to the voice of an oppressed class of people. Let us not forget F.D.R.
There however is still a fallacy working within the movement for people with
disabilities. Though we are working to have funds redirected away from nursing
institutions into community based home health agencies, Medicaid/Medicare still
has much money being ignorantly spent. I recently had a dilemma with Medicaid
in that I am alloted $1000 dollars a month through Medicaid to cover the personal
assistant that gets me up in the morning, 10 hours a week. Well they were telling
me that there was not enough money to pay for all the hours that I proposed
as necessary so that now I would be required to pay a $180.00 a month cost share.
So I asked what exactly is being done with the $1000 dollars alloted me by medicaid.
Well it so happens that a government agency contracted with Eldercare to pay
them $8.60 every half hour for providing me with personal assistance. That's
$17.20 an hour. The girl that comes to get me up gets paid less that $6.00 dollars
an hour. So what is happening to the other $11.20. It is being sapped with the
growing number of home health agencies coming into being who are contracted
services by the government for people who are not in certain need of any nursing
home assistance. Right off the bat 2/3 of the money allocated to provide support
for people under state and federal assistive programs is thrown away before
even reaching those in need and who have right to it. Yet that's just the way
the system is. Then to turn around and try to charge another $180 dollars a
month because of not enough funding. Go figure. Anyways I called their bluff
and i'm trying to figure out who to sue being I have a big enough mouth and
I just happen to be pissed off enough to do something about it, knowing several
millions of people are getting screwed the same way.
I leave these thoughts with a final quote from Mike Auberger, ADAPT's national leader as he faced the steps of the Capitol building, "The steps we sit before represent a long history of discrimination and indignities heaped upon disabled Americans. We have faced what these steps have represented. Among us are those who have been forced to live in institutions against our will. There are those among us who have had their children taken away solely because we are disabled. We have been denied housing and jobs. These indignities and injustices must not go on... We will not allow these steps to continue to be a barrier from the equality that is rightfully ours. The preamble to the Constitution does not say 'We the able-bodied people.' It says, 'We the people.'"
Qoutes taken from "No Pity" by Joseph P. Shapiro
and a newsletter from ADAPT.