Without Us

“Nothing about us without us” has long been the rallying cry of the disability rights movement. The sentiment behind it, that no law or legislation, nothing that infringes upon the rights of the disabled person, should be acted on without the input of the group being affected. But I’ve come to apply it in both a much broader and narrower sense. On one hand I see it as referring to every aspect of society and meaning that disabled people belong everywhere non disabled people are. On the other, I apply it individually to my own life. Choices that directly affect, or only affect, me should not be made without my input. I think both of these views are in keeping with the original spirit of the motto.

It’s only been recently however that I’ve given more thought to the “us” in question. I’m not shy about admitting I’ve struggled to find my space in the broader disability community, and I often doubt my ability to make much of an impact. But I do recognize that I am part of the “us”.

I also readily admit to being bolstered by disabled advocates and activists who’ve come before me. The work of my predecessors has been vital to my growth as an activist. I treasure the lessons I’ve learned from them, the lessons I am continuing to learn. And the same can be said of my disabled peers. Being a part of this community and making connections with people doing the work I hope to do some day is an absolute gift. This is I think what makes it so difficult when one of the activists I’ve learned from, in some cases for years, whose work has made such an impact on my life, dies. It’s as if there’s suddenly this void, something so completely lacking it feels impossible to fill.

The first time I can remember being aware of this feeling was when Stella Young died. I was devastated because I’d only been aware of her for a year. I was still a baby activist, to quote one of my best friends. So her death hit me hard, never mind that I didn’t know her personally. Her story, her experience impacted me and does to this day.

There have been others through out the years, and many more recently it seems. Carrie Ann Lucas and Ing Wong Ward come to mind, people whose lives became legacy much too soon. There have been times when I’ve run through names and faces in my head and morbidly wondered who from the community we would lose next. It never gets easier and you never become numb to it. One day there’s just one less of “us”.

Most recently I was made aware of the death of an Autism activist I’d first started following in college, Mel Baggs. While I’d been following hir blog for the last year or so, I hadn’t been up to date and hir death came as a shock. Here was someone who, much like Stella Young, had influenced my entrance into the wider disability community and to activism in general. Sie was someone I had looked up to and admired and now sie’s gone. Another void left, impossible to fill.

And maybe I shouldn’t put it in those terms. My point being, the impact people have on the world is that they cannot be replaced. Those of us who are left can try to fill their shoes, continue their work, but not for the sake of filling the void they left behind. If anything it should be to honor their efforts and how far they brought the community as a whole just by being part of it. That’s an impact each of us can strive for. The ranks of “us” may shrink, but I firmly believe our impact will only grow stronger until “nothing about us without us” is realized.



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