I have been an advocate for as long as I can remember, the better part of my life at this point. I learned at a very young age to understand what my needs were and the importance of having them met. As I grew up I learned to advocate better and eventually began advocating for others as well as myself. I’ve advocated for individuals and for the disability community at large. It’s what I know in my soul I was meant to do.
That’s why it shocked me to realize recently that I don’t want to do this anymore. Or rather I don’t want to have to do it anymore. I wish, as I’m sure all advocates do, that the work was over. But the fact is it isn’t and I likely won’t see it finished in my lifetime. I was talking about this with my husband the other night, saying how selfish I felt for wishing things were better now. As if it’s not enough that they are going to be better someday, a future I may not see.
His response was to tell me that things are better, better than they’ve been in a long time. And he’s right to a degree. There have been improvements across the board for disabled people in our society. But it’s not enough. We still lack full inclusion in society, equal civil rights or any actual protections of the supposed rights that we do enjoy.
We are at a point where so much progress has the potential to happen, socially, politically and legislatively. But we are just as poised to have all that promise ripped away from us, setting us back even further. So it’s hard to be optimistic, hard to feel anything other than exhausted at the prospect of how far we still have to go. And it’s not lost on me how little room I have to complain. I know I speak from a place of comparative privilege.
I am one of the very few disabled people in this country who has been fortunate enough to take advantage of the progress that was made before my time. Not only did I benefit from the medical advancements that allowed me to even be born, throughout my life I’ve received needed medical care, therapies and mobility aids. I received a mainstreamed public education where I was fully supported by teachers, administrators and support staff. I graduated high school and attended college where I was as fully integrated as I could have hoped for at the time. I received my bachelor’s degree and left school to marry the love of my life. We’re living in a home we love where we are safe and comfortable.
Nearly every day I am reminded of the myriad of gifts this life has given me. And every day I feel a little less pride in this life knowing how few of my disabled peers will never experience what I have. Victories start to ring hollow when you realize how few people receive them. Don’t misunderstand, I’m happy. How could I not be; but my happiness is tempered by the knowledge of how few disabled people are in my position. When barriers to education, housing, transportation, employment, income, marriage and even having a family still exist for nearly every single disabled person, how can those of us who have it better be anything but angry?
But even my anger is a privilege in a backwards kind of way. My impact is small, my single voice doesn’t carry far. So in that way I am allowed to be angry. I risk comparatively little by speaking my mind. This isn’t the case for others. There are those whose existence hinges on remaining silent. Often called “the voiceless”, when shouted down, spoken over and spoken for is far more accurate.
It is these voices that need amplified, their rights protected, their equity given to them. This is the work now. Empowering the powerless, leveling the playing field, to create a society that allows disabled people complete autonomy and functionality. I can’t say for sure what my part in this work will be, but I can tell you this: whatever it is, it will be my privilege to be a part of it.