I sometimes wonder what Ed Roberts felt like, fighting for access to the campus of the University of California Berkeley. It was 1962 - Nelson Mandela had been arrested, the US and USSR would face off in the Cuban Missile Crisis, Federal Marshalls escorted James Meredith to the University of Mississippi and Ed Roberts decided that disabled students should not be kept out of college. Did he have any inclination of what was to come? Did he dream of something different? Did he realize what a big step he was taking, not simply for himself, but for disabled people everywhere? Did he know that what he was doing would lead to something so much bigger? A movement, a culture, a community - vibrant, growing, strong.
Maybe he did. If there is ever an Ed Roberts movie - and G-dwilling, if such a thing should occur, Hollywood will get over its more maudlin instincts in respect to disabled people first - I imagine that is how it will be portrayed. Yet, isn't it just as likely that he acted like so many of us do - not out of some broad vision for a movement yet to come, some brilliant flash of inspiration that will inevitably lead to chanting and organizing and marching in the streets, but instead out of a simple desire to assert control over his own life? In some ways, this is less inspiring. In other ways, it is far more so.
When I was a teenager and had recently been placed in a segregated “special” school an hour and a half away from my home, I read about Ed Roberts. I read about the disability rights movement. Given the fact that the school I rode to in a small white van to every day treated academic education as an afterthought, reading was one of the only ways I had to learn. So I read - and I wondered what motivated people like Ed Roberts or Judy Heumann or any of the other disability rights leaders I had been introduced to through books and journal articles. This was relevant to me, because I saw in their success stories – rising from being considered as too disabled to go to college to founding the independent living movement or going from being denied teacher certification by reason of disability to becoming Assistant Secretary of Education – a chance for my own life.
When I did advocate to return to an inclusive setting, I left behind not just the special education school tucked atop a hill in North Jersey where it rented space from a convent and not just the two special education case managers I had arranged to be dismissed when they tried to tell me what I should do with my life, but also any remaining delusions about what my life would be like if I just went along with the system. I carried that newfound sense of clarity with me when I embarked on my first experiences in advocacy work. It continues to guide me as I work to advance the rights of Autistic people to control our own futures and that of our community in the national conversation about us. Despite the importance of that concept to my work, however, I stumbled upon it by accident – when all I wanted was a chance to get an education that might make the future I desired possible. I’m not Ed Roberts. I’m not a great hero of the disability rights movement. The path I moved on to get to where I am now was, while rocky, uncertain and often treacherous, blazed before me by great men and women whose work made my struggle easier before I had ever heard of them. Yet, I like to think that at some level I understand why they started doing what they did – not because of some grand vision or dream, but because of a simple and abiding desire to take control over their own lives. This is the essence of our movement. Basic. Simple. Essential.
Nothing About Us, Without Us!
-Ari Ne'eman
Wednesday, June 17, 2009
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