Trigger Warning: Exclusion of people with disabilities from discussions that concern them
Dear #autismchat,
You disappoint me. Having a panel of autism experts talk to people is actually a great idea, but no one knows how to manage BEING autistic better than someone who has spent his or her whole life BEING autistic. That's not to say there can not be neurotypical ``autism experts" on a panel. It's purely to say that any selection of experts on #autism should include people who are #actuallyautistic. One of the core tenants of disability advocacy is ``Nothing about us without us." That's what you're violating. It's not ``Only we can say stuff about ourselves." That would honestly be near-impossible, and it would exclude some stakeholders. Family members are stakeholders, after all, just not the biggest ones because it's not actually their lives. It's not ``The ratio of autistics to neurotypicals on the panel must be exactly the ratio of autistics to neurotypicals in the general population." The effects of that would be highly problematic. Autistics are a minority, figuring out the exact ratio is a mess, and that will lead to excluding the most qualified people in order to get the ratios right. It's ``Nothing about us without us." WE can have conversations. I can talk to you. You can talk to me. People who are autism experts by way of study can talk to people who are autism experts by way of being autistic in a two-way conversation, and the public can ask questions, getting answers from people who are experts by way of either or both. (Because yes, there are people who are autistic and study autism, just like there are people who aren't autistic and study psychology focused on things other than autism.)
You can't have a conversation about autism without autistics. And yes, we can communicate. Not always the same ways you do- some of us type but don't talk (not an issue on twitter), some of us type in long paragraphs (yes an issue on twitter, but that's what linking to your blog is for), some of us use sign language, some of us normally do talk. It varies, and any conversation about a disability needs to be made accessible to the people who have that disability. It also needs to be open to people who have that disability rather than exclude them, as your chat seems to be doing. That's why I'm writing this. It's also why I will be twittering something about it. I'm still not sure how I'm going to say something that will make you click on the link to this post (or at the very least, think hard about why no one autistic is on the panel) and include the link, all in 140 characters. Short statements aren't really my friend on the internet. I've been told that's sometimes an autism thing. (So why isn't this conversation a flash blog? That format is totally friendly to longer statements!)
Also, why twitter? The experts won't be able to give full answers either!
Sincerely, Alyssa
Dear #autismchat,
You disappoint me. Having a panel of autism experts talk to people is actually a great idea, but no one knows how to manage BEING autistic better than someone who has spent his or her whole life BEING autistic. That's not to say there can not be neurotypical ``autism experts" on a panel. It's purely to say that any selection of experts on #autism should include people who are #actuallyautistic. One of the core tenants of disability advocacy is ``Nothing about us without us." That's what you're violating. It's not ``Only we can say stuff about ourselves." That would honestly be near-impossible, and it would exclude some stakeholders. Family members are stakeholders, after all, just not the biggest ones because it's not actually their lives. It's not ``The ratio of autistics to neurotypicals on the panel must be exactly the ratio of autistics to neurotypicals in the general population." The effects of that would be highly problematic. Autistics are a minority, figuring out the exact ratio is a mess, and that will lead to excluding the most qualified people in order to get the ratios right. It's ``Nothing about us without us." WE can have conversations. I can talk to you. You can talk to me. People who are autism experts by way of study can talk to people who are autism experts by way of being autistic in a two-way conversation, and the public can ask questions, getting answers from people who are experts by way of either or both. (Because yes, there are people who are autistic and study autism, just like there are people who aren't autistic and study psychology focused on things other than autism.)
You can't have a conversation about autism without autistics. And yes, we can communicate. Not always the same ways you do- some of us type but don't talk (not an issue on twitter), some of us type in long paragraphs (yes an issue on twitter, but that's what linking to your blog is for), some of us use sign language, some of us normally do talk. It varies, and any conversation about a disability needs to be made accessible to the people who have that disability. It also needs to be open to people who have that disability rather than exclude them, as your chat seems to be doing. That's why I'm writing this. It's also why I will be twittering something about it. I'm still not sure how I'm going to say something that will make you click on the link to this post (or at the very least, think hard about why no one autistic is on the panel) and include the link, all in 140 characters. Short statements aren't really my friend on the internet. I've been told that's sometimes an autism thing. (So why isn't this conversation a flash blog? That format is totally friendly to longer statements!)
Also, why twitter? The experts won't be able to give full answers either!
Sincerely, Alyssa
Hi Alyssa. This is Liz Szabo, writer at USA TODAY, and I organized the chat today. You make some great points! Thanks for educating me. The fact is, I'm pretty new to covering autism, and I had never met a lot of these autistic self-advocates until today! We all have learning curves. I was so happy to meet these folks, and I'll be sure to include them in future coverage. I hope you can accept that this was an honest mistake, rather than something malicious. The whole reason I do Twitter chat is to include as many people as possible. Why would I choose Twitter, where 500 people can simultaneously point out my mistakes, if I weren't open to a little dialog? ;--) Can I explain my thinking? I organized this Twitter chat the same way I do all my regular Twitter chats on "the latest news in cancer," or "what's new in diabetes," which is by finding some of the best expert doctors and scientists to answer reader questions on copmplex research. These are typically the people quoted in my articles, and I like making them available to readers, so the article can sort of come to life. Also, their time if pretty valuable. (Ever tried to make an appointment?) So I feel like it's pretty cool to give readers a chance to ask them questions for free! It's a chance to give readers the same sort of privileged access that I enjoy. That said, I absolutely, positively want to involve patients, their families and advocates, too. That's why I asked the Autism Research Foundation and Autism Speaks to be involved, too, so that they could answer questions about social support, getting services for people's kids, insurance coverage, etc. It didn't occur to me to "book" any families or people with autism, because I was just hoping they would show up, like they have shown up for the cancer, diabetes, etc panels. I can't assume that some stem-cell researcher is going to just show up to a Twitter chat (most doctors aren't on Twitter yet and I have to teach them before the chat!), so I try to reserve them in advance. On the other hand, I was pretty sure that a good number of families affected by autism would drop in. But you know what? Now, I have met lots of great autistic self-advocate, even more parents of autisic kids, and I can be sure to "book" them as experts if we ever do this again, and even interview them for future stories. In fact, this whole experience has given me an idea for a future story idea about how autism is perceived by the "outside world" and by those in the autistic community. Feel free to weigh in, of course! Wow, that's too long for a tweet. ;--) Thanks for weighing in and caring enough to write. Liz
ReplyDeleteSo, I realized after that my reply wasn't actually done as a reply, so you might not know to see it. Anyways, I like the story idea, and there are no hard feelings for honest mistakes (not from me, anyways.) I'd totally be game for answering stuff related to such a story, or anytime you want an actual autistic perspective. I think this is the part where someone says alls well that ends well, and even one person seeing that we can speak for ourselves and should be included counts as ``ends well" to me.
DeleteHi Liz,
DeletePlease, please, please include Autistic people on a future panel, and please reach out to groups like the Autistic Self Advocacy Network, the Autism Network International, the Autism National Committee, and TASH -- organizations that not only meaningfully include Autistic people in leadership (or are led entirely by Autistics), but which are focused on civil rights and redress of societal grievances caused by systemic ableism, rather than "fixing" or "curing" us.
Blessings and peace,
Lydia
Hi Liz! My first reaction to this is ``Wait, what? Someone actually listening to me?!" I think that should give you a good idea of what I'm used to dealing with. Knowing it's an honest trying to do what's best makes me very happy, and I'm glad you'd like to include us. The way you're thinking actually sounds pretty good. It's just that I deal with so many people who exclude autistics from panels ON PURPOSE that my initial response is to be pissy. I'm by no means saying that those people shouldn't be there (except maybe Autism Speaks, since they are one of the groups that tends to purposefully exclude us.) I just think that self-advocates should be on the official panel as well, and I'm glad you're planning to book them if you do something like this again. And I'll certainly keep weighing in. It's usually too long for a tweet though.
ReplyDelete