Rachel is a Jewish bisexual autistic woman (she/her) with ADHD in her twenties. She loves writing and can always be found with her nose in a book! Her plan for the future is to earn her Psy. D. in clinical psychology. This interested in psychology started as a way to help her understand people better and to figure out what it was about others I kept not getting. It is also something deeply linked with her self-advocacy. There is a gap in communication between the autistic community and providers, and she want to help bridge it and challenge others to see things from different perspectives.
View all postsThe Accessibility of Advocacy
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Last month, I was privileged enough to be able to attend the Disability Policy Seminar in Washington DC. Very literally privileged, as it was only through the support of my family and the existence of my savings that I was able to pay my way to attend the seminar without the backing of a larger organization. The opportunities to connect with others doing advocacy work, and to do some important advocacy work myself by speaking to Senator Fetterman, were invaluable. But they came at a very concrete price.
The registration fee, while discounted for self-advocates, was $305. Staying at the hotel where the seminar was located cost me over a thousand, even at the discounted room block rate. And of course, the Amtrack tickets cost me well over another hundred. This is not a small sum. Maybe potentially manageable for your average working professional, but let’s be real here; many disabled self-advocates are not your average working professional. That was a hard fact for me to ignore during those three days, especially not when so much of the seminar was focused on the harsh financial limits placed on those dependent on SSI.
Studies have shown that up to 85% of adults on the autism spectrum are unemployed at any given time. I’ve been among that number, and even now I still don’t work a full-time job. While in my case much of this has been by choice, that isn’t so for plenty of others. I’ve encountered many self-advocates who are on disability, to the extent that how much they can even be compensated for their advocacy work is limited. I can’t help but think that in that light a hundred-dollar discount for self-advocates isn’t much of a discount at all when the price is still $305. And while it would be possible to save on hotel costs by getting accommodations further away from the seminar’s hotel, would everyone be able to navigate that so easily?
Doing work as a self-advocate relies on networking. It’s all about who you know, who else they can put you in touch with, and who will remember you when a new project needing a self-advocate comes up. Everything I’ve ever been involved in, I got involved in through this way.
The disability policy seminar was amazing for networking. I got to meet people from organizations I’d never interacted with before and even got to work with some of those organizations at the seminar itself. Either by participating in a focus group or by recording video material for them to use.
This networking is hard work. Even for someone not on the spectrum, I’m sure it’s hard work. I was exhausted by the end of the seminar. The masking that goes into networking at an event like this (yes even one where it’s understood that I am autistic) is immense. It was all worth it though, for the connections I made that I hopefully will be able to continue to cultivate. In this way, the seminar was incredibly helpful to my work as a self-advocate. Especially when I’m still working to build up my network and fill it with all these necessary connections. However, as I pointed out, it’s hard to access an event like this unless you already have the connections needed to find an organization willing to sponsor you or unless this is part of your job. I couldn’t help but feel that this seminar was least accessible to the self-advocates who might need it the most; those working independently without any kind of backing. The ones who still have so much to learn about all the advocacy opportunities that exist.
It’s not easy to be an autistic self-advocate. Not when almost all the opportunities you find will be acquired through word of mouth. When you have a network to always stay on top of it so people won’t forget about you and forget to come to you. I wish it were easier, I wish it was more accessible. There are so many voices we don’t hear from because making themselves heard is too hard.
Even I only came to be a self-advocate by chance. One opportunity suggested to me in passing eventually led to another. But I could have easily never had that first opportunity.
When I point out how inaccessible advocacy often is, it is not to devalue or criticize advocates who make it work despite that. Who hold down full-time jobs and still make themselves available for important advocacy work. Who carefully save their money to fund going to events like the seminar. But it remains so that there are plenty that can’t do this, and those that can shouldn’t deny the extra effort it takes.
It’s something I want everyone involved in disability advocacy to remain mindful of, because if we do then maybe we can also focus on changing things for the better. It can only be a good thing if more voices are heard.