In the UK an autistic teen put together a speech to save his school at a local policy meeting–but no one came to hear it. Not even the officials who were invited.
Sometimes my self-advocacy does lead to results. But other times it goes the same place the teen’s speech did–into a silent void of no one caring. Or, at times, not even that far.
I’ve been sitting on the topic for this post for a long time–there’s a long, ranty note in my “ideas” file that spewed out of me during a high point of frustration earlier this year. The note starts out with the text, “infrastructure and power in the way of self-advocacy–” To that I think I’ll add “apathy.”
My ire was inspired by attempts made by numerous people to effectively deal with disability discrimination at my university–attempts that never went anywhere. But I’ve encountered these same issues within social services as well, and so have others. Here are some key issues:
1) How does one organize an effective group action when people are systemically isolated? More specifically, how does one organize an effective protest against disability discrimination when not only there is no way to identify the people who are affected by the discrimination, but the very infrastructure in which one is operating is designed to actively prevent communication from occurring?
2) What is to be done when those few individuals who do have the power to communicate with the people affected by the discrimination (e.g., a program coordinator who controls a private mailing list) are also those perpetrating the discrimination? One can’t ask the program coordinator to send a message, “Hey! Everyone feeling oppressed by the program coordinator, meet in Smith 104 on Tuesday at 3!” That message is not, naturally, going to be sent. No more than the king is going to announce that his serfs would like to call a meeting to depose him.
3) How does one get started when resources to enable effective self-advocacy are in fact the very resources perpetuating the discrimination? For example, what happens when the campus disability resource group is engaging in discriminatory practices? This would be akin to having a defense lawyer who is openly working for the prosecution.
4) And, how does one make their needs known in a system when that system doesn’t care at all about the person’s needs?
Sometimes we end up having to advocate for our right to advocate, to fight for the ability to fight.
And scream into that silent void until we can no longer be ignored.