8:48pm May 21, 2014

Some people see advocacy as a package deal.

That is, there are a number of different issues, and everyone should be on the same side of every one of those issues.

Here’s a list of issues that are important in many autistic and disability contexts:

Do we want a cure?
Do we like being autistic?
What do we think about ABA and other behavior mod?
What do we think of aversives?
What do we think of institutions?
What do we think of alternative communication?
What do we think of facilitated communication?
What do we think of the anti-vaccine movement?
What do we think of autism quackery/alternative remedies?
What do we think of efforts to make autistic people more ‘normal’?
What do we think of autistic people’s access to the same healthcare as other people, including things like organ donation?
What do we think of parents who murder their autistic children?
What do we think of sheltered workshops?
What do we think of adult services?
What do we think of employment issues?
What do we think of helping people get on, and stay on, government disability benefits?
What do we think of encounters with the police?
What do we think of parent allies?
What do we think of whether autism should be considered a disability?
Do we think the autistic community is part of the disability community?
Do we think autistic activists should be connected to other elements of the disability community, and take on common phys-dis issues such as nursing homes, wheelchair access, and assisted suicide?
Do we believe in independence, or interdependence?
Do we think you have to be an activist to be a good autistic person?
What do we think activism, self-advocacy, etc. is in the first place?
What is the role of autistic people in autism research?
What do we think of various “big name” autistic organizations or autistic people attached to the self-advocacy movement?
What do we think about ableist language?
Do functioning labels make sense?
Should low functioning autistic people matter more than high functioning autistic people, or vice versa? (And do these categories even make sense?)
How do issues of power and privilege play out in our community?

And many people see that as a whole package – in order to work together, people must have similar answers to all of those questions. Sometimes a few questions are elevated in status. So that “Do you want a cure?” becomes the standard of whether you’re a Good Advocate or not, no matter what else you’ve worked on.

I don’t see advocacy as a package deal.

I see it like this:

You pick the issue that you are working on right now. Then you work on that issue with other people who are like-minded enough that you’re all at least vaguely working on the same thing. You don’t have to all agree, even about that one issue, but you should agree enough that you aren’t arguing about whether to even get started or not.

And then, you should not sit there trying to make sure you agree on all these other things that aren’t relevant to the project at hand. If I am working with someone on a project that will help prove that they are really the person authoring their own communication, then it is my job not to give a fuck that they don’t like being autistic, or that they can’t stand ASAN, or some other thing that often becomes a sticking point for people. Because those things don’t matter at all when you are trying to help someone gain the most basic, fundamental right to communicate and be heard.

And this can happen on any issue – you stick to the things you need to agree on in order to work productively on that issue, and you drop everything else. Or almost everything. Obviously some things are going to still be beyond the pale regardless. But it’s important not to let the 'package deal mentality’ overwhelm efforts to actually get real shit done in the real world.

There are lots and lots of disabled people out there, including many autistic people, who are doing excellent work on behalf of other autistic people’s rights. They are shutting down institutions. They are helping people learn to communicate who had no means of using words for the first forty years of their lives. They are lobbying against the use of restraints and aversives. And many times, they are doing all these things without the people who usually call themselves the autistic community even noticing. They are doing amazing stuff. But if they want a cure, or they publicly and vehemently hate being autistic, or they advocate for the idea of functioning labels, or something else… then they’re automatically assumed to not be good advocates. Because it’s become a community norm for many people to think advocacy is a package deal.

If people want to change this, the best way I’ve ever seen has been to take each issue as it comes, and stop trying to get everyone to agree to everyone at once. It’s far more efficient, too, because you’ll get a much larger number of people willing to work with you if you’re not requiring them to sign on to an elaborate ideology in the process.