When, shortly after the occupation of Zuccotti Park (Sep. 17, 2011), I started organizing disabled people to join in the new Occupy Wall Street movement, which seemed to be growing at the speed of light, I was criticized by leaders in the disability rights movement, including my good friend Bob Kafka, a national leader of ADAPT.
ADAPT is a grassroots organization of people with disabilities. Founded in 1983, ADAPT fought first for access to public transportation. At the time ADAPT stood for "American Disabled for Accessible Public Transit." After passage of the Americans with Disabilities Act, the focus shifted to freeing disabled people from institutions and making it possible for those with even the most significant disabilities to live in their own homes in the community, with all the necessary services and supports. ADAPT, then, came to stand for "American Disabled for Attendant Programs Today." Currently, ADAPT simply stands for ADAPT, it's no longer an acronym.
The services and supports for which ADAPT has been fighting are or would be funded by Medicaid, the health care program for the poor. Since, outside of self-pay or costly private insurance, only Medicaid covers long term care, disabled people are often forced into poverty and forced to stay poor. Thus, ADAPT is fighting not for the Larry Flints and Christopher Reeves, but for the neediest and the poorest.
ADAPT makes very effective use of civil disobedience. At national actions, 100 to 200 people, most if not all disabled, get arrested. Getting arrested is proof of our commitment and is an empowering act for those who have been powerless. ADAPT activists are very proud when they get arrested, though it's always an ordeal, especially for those with significant disabilities. I've been arrested with ADAPT more times than I can remember.
Since ADAPT is known as the radical arm of the disability rights movement, I didn't expect an ADAPT leader to disapprove of our involvement in Occupy. Yet, Bob Kafka wrote: "At a time when our people across the country are being threatened with cuts to basic services, States are slashing Medicaid budgets, workers with disabilities are being targeted [and laid off], sheltered employment pays sub-minimum wages, we need to use our scarce organizing energies and resources carefully, and not be dazzled by a movement that hardly recognizes our issues." And he added: "Personally I'm tired of educating 'progressives' on our issues 38 years after 504 [the Section of the 1973 Rehabilitation Act prohibiting discrimination on the basis of disability in all programs receiving federal funding] and 21 years after the ADA [Americans with Disabilities Act]."
Bob's message exemplifies a widely held attitude in the disability rights movement, that of seeing our issues as ours and ours alone.
All of us who fight for social justice know very well that it's always the poorest and the neediest who pay for the sins of the rich. In times of plenty, poor people are thrown some crumbs. And those crumbs often are enough to pacify us and render us passive. In times of economic crisis, of course, poor people are the ones who are made to bear the heaviest burden.
Because we have always had the highest unemployment rates, even in times of economic boom, and because so many of our people have always depended on social programs, there is no question that the disability community was hit as hard as could be during the latest economic crisis. A crisis that was caused by Wall Street, by the big banks, by our government's commitment to the "free market," and the idea that an unregulated market is the best way to increase economic growth, that no matter how much social damage it may cause, it will ultimately benefit everyone. That commitment was unshaken by the economic crisis. In fact, what was the remedy? The big banks that caused the crisis got bailed out. "Banks got bailed out, we got sold out."
Though the disability community was hit very hard, others suffered as well. Nondisabled people were also hurt by those Medicaid budget cuts, as well as by unemployment, by cuts to public school budgets, to senior programs, to homeless assistance, to all social programs.
Why was Bob Kafka telling me to focus on "our" issues? Why was he accusing me of spreading myself thin, when all I was doing was joining forces in order to be stronger? Of course, I didn't follow Bob's advice and went on to start the Disability Caucus of Occupy Wall Street. On the West Coast, in Chicago, and in other cities disabled people were also organizing and joining the Occupy movement.
To try to explain the puzzling attitude of many disability rights activists, I'd like to take a closer look at the relationship our movement has had through the years with other movements fighting for social justice and in general with the "left."
As an aside, I must confess that, being born and raised in Italy, I never thought there was much of a "left" in the United States. But I am now starting to feel more hopeful.
The disability rights movement was born out of other movements, in a time of great uprising—a time very similar to our own. We have always followed the example of other movements, certainly of the civil rights movement. For 40 years we have demanded our "civil rights." From the very start we called ourselves "a minority." In fact, in the US, the "minority model" is probably more recognized and better understood than the "social model."
Disabled In Action was founded (in 1970) by Judy Heumann and others, who all had strong connections with progressive, "leftist" groups. In subsequent years, we would bring the DIA banner to every anti-war rally (too many of those to count), every women's rights' march, anti-nuke protest, environmental demonstration, and every gay pride parade.
On the west coast, the affiliation of the budding disability movement with the left was just as strong. When, in 1977, the San Francisco disability rights activists sat-in for 25 days in the Health, Education and Welfare offices in order to get the regulations to Section 504 of the Rehab Act signed, they had the full support of the very progressive East Bay community. The Black Panthers brought them food, and the Butterfly Brigade (a gay group) provided them with walkie-talkies. The sit-in started what at the time we thought would be a tradition of solidarity between disability rights and other movements also fighting against oppression.
Yet, through the years, while individual disability rights activists have aligned themselves with various other social justice groups, on the whole, the disability rights movement has insulated itself from other movements. Those national organizations that supposedly represent us have in general put their trust in the liberal democrats, as being better than the republicans.
Why has this happened? If you ask around what you'll hear is: "They don't want us." And, indeed, leftist groups are notorious for holding events and meetings without giving any thought to access—wheelchair accessibility, materials in alternate format, sign language interpreters. What you may also hear is: "The left doesn't get it."
In October of 1986, ADAPT was fighting for wheelchair lifts on buses, and was in Detroit to hassle the American Public Transit Association, which was holding its convention there. Since Rosa Parks lived in Detroit, ADAPT invited her to attend their press conference and lead their march. In the fight to get on the bus, ADAPT activists had been using Rosa Parks as their icon—often appearing at protests with name tags reading "My name is Rosa Parks"—trying to make the public connect our movement with the civil rights movement. An often-quoted sound bite from ADAPT in those days was: "A civil rights movement was born when people refused to ride at the back of the bus. We can't even get on the bus."
Rosa Parks failed to appear at the ADAPT's press conference and march. Instead, what ADAPT got was a letter from her. She cited as her reason for refusing the invitation "the traumatic manner in which you [ADAPT] choose to dramatize disabled Americans' lack of access to public transit." She said she didn't want to "embarrass the city's guests and cripple the city's present transportation system."
It was a heavy blow. I don't want to elaborate. We realized—and this would be confirmed repeatedly in the future—that while we tried to show the similarity of our movement to other social justice movements, those other movements were not so interested in our commonalities. Even when "our issues" were the same as "their issues," they preferred to see them as "special." And they saw us—disabled activists—as "special," and "inspirational;" they kindly offered support but not true solidarity which only comes when you can "identify" with each other.
The most respected community organizers and activists treated us the same way as everyone else did. The wall of "ableism" stood between us. Ableism is the belief that an able body is the "norm" in society, and that people who have disabilities must strive to get as close as they can to that norm—something we cannot always do nor do we necessarily want to do. It's the belief that disability is, inherently, a "bad" thing, a tragedy, rather than a simple consequence of being human and another example of human diversity, akin to race, ethnicity, and sexual orientation. Ableism is prejudice and we encounter it every day and we fight against it every day.
I must say, that in times of economic crisis, we have often managed to join forces with others fighting oppression. Certainly, Disabled In Action always has. I remember us joining the Same Boat Coalition in the early 90s. In 1993, when we organized the Disability Independence Day March, an event that drew close to 3000 people, we managed to bring together not only all the different segments of our community—people with all types of disabilities—but we had marching with us labor representatives and activists from different social justice groups.
When the occupation of Zuccotti Park began, my life partner and I, as well as some of our disabled friends, eagerly headed downtown. Was this the revolution we had been waiting for all our lives? Especially at first, the reception we got from the many people congregating around the park, whether they were organizers, "leftists" or simply curious visitors, was the same patronizing one we always get—the usual "pat on the head" and the usual comments: "How inspirational you are for coming here! How hard it must be to get here in your condition!"
Yet, when we ventured into the quickly growing encampment, we were "welcomed" by the occupiers. Of course, they were not immediately aware of our various needs for access. But I remember how readily and enthusiastically they moved cartons full of clothes and folding tables to make room for our wheelchairs, how tolerant and understanding they were when we rudely awakened them by accidentally hitting sleeping bags with our chairs, how joyfully they shared food with us. As we sat amidst the jumble of paraphernalia and listened to mic checks, we felt not only welcomed but "embraced." Literally, hugs were freely and generously distributed.
We realized soon enough that many of the people camping in Zuccotti Park had experienced real oppression, and also that many of them were "disabled." Some, whose disabilities were hidden, chose to "come out," reveal their disabilities to us, and ask for advice in dealing with a hostile system. We felt not only wanted but needed.
So, though I never spent a night at Zuccotti Park, I was at home there.
Then on Nov. 15th the park was raided, what had been lovingly built was destroyed, the people were driven away, pepper sprayed, beaten, arrested.
Two days later, I was arrested in the attempt by Occupy Wall Street to block the Stock Exchange. Following my arrest, Disabled In Action and Krips Occupy Wall Street, who had been regularly lining up on the Broadway sidewalk in front of Zuccotti Park with protest signs, decided to formalize our presence in the Occupy movement. We became the "Disability Caucus of Occupy Wall Street."
We have taken part in many OWS events and actions, and have organized our own. On Aug. 8, we protested in front of Gracie Mansion in opposition to the mayor's 1% policies which marginalize New Yorkers of all backgrounds. Having shown nothing but contempt for the disability community, stomped on our rights and used our law against us in court, he was throwing a party for the ADA, trying "to buy us off with a hamburger and a pat on the head." There were eight arrests. We had another four arrests on September 17, when on the anniversary of the first occupation, wheelchair users blocked Broadway in front of Zuccotti Park. The Disability Caucus has earned the respect of the whole Occupy movement in NYC.
A great deal has changed since the days of the original occupation. The media reports that the movement has dwindled. In a way that's true, since Occupy Wall Street as we knew it has fewer people. What we have today is a loose conglomeration of different groups working on different issues all using the language and ideology of Occupy; the latest initiative is Occupy Sandy Relief, which impressively sprang into action a few weeks after our October 4th forum. Some groups were in existence long before OWS, some are old left, others are new. There are protests every single day, sometimes two or three a day. And I've seen many of the same faces at different protests. This tells me the Occupy movement has evolved. It has brought various groups fighting for social justice together. I'm proud to say that we are there, too, and our presence is felt. Had Occupy allowed itself to be pressured limiting itself to one or two specific demands, this coming together of diverse groups would not be happening.
What Occupy has also done is embolden all of us. You will hear previously timid people say words out loud with pride. Words like "revolution." You'll hear "I'm a socialist," a democratic socialist or whatever kind of socialist, or a communist or an anarchist.
This is the time for the disability movement to be bold. For decades, the strategy of the power elite has been to throw us those crumbs and then threaten to take them away. They keep us fighting to hold on to those crumbs, so we do not demand what should be rightfully ours.
ADAPT has been fighting for years to make a small change in the Medicaid program: eliminate the institutional bias which mandates states to provide services in institutions and not in one's home. ADAPT's work is extremely important. Our people die of neglect in nursing homes, they serve life sentences for the crime of having a disability.
It is imperative that we "free our people." But why have we never questioned the existence of a separate program for the poor? Medicaid is inherently discriminatory. It is medical apartheid. In communities of people of color, the outcry against disparities in health care is getting louder. Statistically, people with cancer who rely on Medicaid are almost as likely to die as the uninsured. Yet, the disability community puts all its energy into preserving Medicaid as is, for fear of losing Medicaid funded long term care.
Why hasn't the disability movement joined the movement for a national health care program? We need a strong health care program that includes long term care, so that people don't have to impoverish themselves, and be forced to stay poor in order to get services that should be ours by right.
That's just one example. It is time we move "beyond ramps"—that's the title of a book my friend Marta Russell wrote back in '97. It is even time to move beyond fighting for equality. And fight to change the system that creates and fosters inequality.
My ADAPT t-shirt says "Free Our people." But I know "our people" will not truly be free unless we all join together and fight for all oppressed people to be free.
Nadina LaSpina is an activist for social justice and in particular for disability rights. She has been arrested countless times for civil disobedience and is an organizer for American Disabled for Attendant Programs Today (ADAPT), Not Dead Yet and the Disability Caucus of Occupy Wall Street.
[…] articles, essays, and stories have appeared in publications as varied as AbleNews and Ragged Edge, New Politics, And Then, and Bookwoman. After teaching Italian for many years at New York University and at […]