So, Liz Szabo from USA Today, the same person who ran the #autismchat better than a month and a half ago, published another autism story today. This post is what I would like to say to her.
Liz,
When you made your comment on my blog post about being upset with the autism chat, it sounded like you might become an actual ally, not one of the people who claims to be an ally but doesn't actually listen to us, the people who know the most about living autistic by way of having done so our entire lives. Maybe my expectations were high because I have not been disappointed to watch someone I thought got the point turn out to have completely missed the point enough times. Maybe I thought the fact that autistics can and do have their (and our) own opinions on autism and how to handle autism, which mainstream news all-too-often ignores, was clearer than it really was. Or maybe you forgot everything you seemed to have learned that day. Maybe you didn't even care and your comment was fluff to appease an angry reader. I don't know what to think.
I'd like to think that you honestly believed that talking to a researcher who was also the parent of an autistic child was bringing autistic voices in. But... considering the number of comments about how ONLY actual autistics speak with autistic voices, and everyone else can speak with the voice of an ally or not, I have trouble doing so. I think that the idea of talking to autistic people involved in autism research or to autistic experts on autism slipped your mind because you forgot that we do not go away when we grow up, that autistic adults exist in every career (yes, autistic doctors and teachers and scientists all exist. I'm on the way towards being an autistic something in the gray area between engineer and scientist.) Finding an autistic who does autism research wouldn't be that hard. It probably wouldn't be research into causes and cures, though, since that actually autistic know that the most good can be done by funding supports that work and doing research into finding therapies and supports that will help us better. We know how many autistics would reject a cure if offered. (Hint: That's a lot of us. Our families, I suspect, have a much higher rate of wanting us ``cured" than we do, or else there wouldn't be much of any research in that area.) We know that figuring out the causes doesn't help anyone who is autistic NOW.
So, what can you do? You're fully capable of ignoring me. You could keep writing stories about researchers and families like most of the other mainstream media writers do, not asking the autistic siblings and children how they see their own lives. You could keep writing about autism only as it pertains to children, continuing to imply that autism is a children's condition and that autistic adults like myself do not exist. I sincerely hope that's not what you do. It's not what I thought you would do when you wrote your comment on my blog before, and I'd like it if you could make me think you were different again.
But...
This time it will be harder. A comment on my blog wont be enough. You would have to:
1) Whenever you do a piece on issues facing autistics, get the information on what the problem is and why it's a problem from the autistic people facing the issue. Conduct interviews by email instead of in person if you have to, since some of us type but do not speak.
2) When you identify someone you interviewed/quoted as being autistic, ask them how they identify. It might be ``autistic" or ``autie" or ``aspie" or ``person with autism" or ``person with aspergers" or any number of things. Whatever that person says, go with it. Self-identification is part of self-determination, and yes, many of us DO care. (I am autistic. I am an autistic person. I am NOT a person with autism, and I don't really care that the way I identify isn't considered politically correct. Put it in the article that this is the way the person said he/she wanted to be described if you have to.)
3) You can talk about research about autism of any kind that is happening. You ARE a reporter, after all. But you don't get to say that autistics want something if you only have quotes of parents and siblings saying they want it.
4) We aren't tragedies when clearly disabled, and we aren't inspirational stories of overcoming/living with disabilities when we live our lives. Don't paint our stories in either of those shades.
5) Do not take us out of context. If you aren't sure about the context, ask.
6) Don't fear-monger about autism. (If the story would make a parent terrified of the 1 in 88 chance of autistic spectrum disorders, it's probably fear-mongering. If it makes the parent think it's difficult, but still rewarding, you're probably in better shape. If you call autism a disease or talk about it as an epidemic, it's definitely fear-mongering.)
7) Remember that autistic ADULTS exist, and don't write exclusively about the kids. I know that kids are cute and cuddly, but it does a major disservice to autistics when people ignore the adults.
That should make a good start on how to write about autism in ways that wont disappoint and/or anger the actually autistic. You will, of course, still have autistics annoyed at you at times. (Some of us are militantly identity first for all cases, and some are militantly person-first for all cases, for example. Get one autistic and one person with autism in the same article, and both of those camps will be angry.) But that's OK. Autistics get angry with each other too, sometimes. What we try not to do, though, is ignore the points of view that autistics have, even when we vehemently disagree with them. We try not to let awareness of what it's like to have an autistic family member be at the expense of hearing from the people who are autistic themselves.
Showing posts with label #autismchat. Show all posts
Showing posts with label #autismchat. Show all posts
Wednesday, May 23, 2012
Thursday, May 3, 2012
Functioning Labels
Trigger Warning:Ableism, Passing description of self-harm
Yesterday at the #autismchat, one of the things I said was ``High functioning means your needs get ignored. Low functioning means your abilities get ignored." I am by no means the first person to say something like this. Over at Autistic Hoya, there is a good cartoon about functioning labels. I think that over at Just Stimming, something along these lines has also been said. Cal Montgomery criticized a lot of the ways they're used in a movie review back in 2005. And of course, every time someone assumes high functioning/Aspergers because someone blogs, this gets brought up. It gets brought up because it's true.
I have traveled foreign countries alone, and done so competently. That doesn't mean I'm not Autistic. It means that the skills I have allow me to do that. I don't catch a lot of non-verbal communication. That's a skill I don't have so well. If the situation I face is needing to figure out how to get from point A to point B by public transit, I am in good shape. I'll function GREAT. If the situation is a crowded gathering where I need to politely interact with people, I might manage the length of the party (or I might not.) Then I go home and shut down. My functioning in that area is kind of cruddy.
How do you define high and low functioning? Is it by how easy it is to make an independent living arrangement work for that person? (what if the person never had a reason to live alone/independence is a myth anyways, but certain kinds of dependence are seen as natural) Is it by ability to navigate from point A to point B safely? (what if the person works from home, uses PeaPod, and doesn't need to go places alone?) Is it on being able to drive? (what if the person never had money to buy a car and try to learn, or if the person lives in a city where driving isn't needed?) Is it by ability to handle social situations? (what if the person just doesn't care?) Is it by ability to speak (sign language/typing/AAC anyone?) Is it by ability to blog? (That doesn't imply being able to drive, live alone, or speak, by the way.) Is it by whether or not the person has any self-harming or dangerous stims? (I pick at my skin as one stim, and yes, I've drawn blood. I have also banged my head against walls, though I've not done so hard enough to cause permanent damage.)
Is it by when someone learned to talk? (Once talking has been figured out, you apparently can't actually tell when the person learned by way of other traits...) Is it by the history of any other traits? (But wouldn't that mean that we're assuming the person's skills to be static? That's just not accurate.) Is it by IQ? (Does IQ even really mean anything useful anyways? It's history is basically a mess of ableism.) Is it by what society thinks we should be able to do? (what do they want, anyways? Also, society is made of fail sometimes.) Is it by what WE think we should be able to do? (We're not going to agree with each other... And it's not as if people listen to us much. They should, though.)
So, what are we defining functioning by anyways? We ALL have strengths and weaknesses. If I'm high functioning, you just ignore the weaknesses, and if I'm low functioning, you just ignore the strengths. Either way, we get hurt (and ignored!)
Edit: A translation of this post into Chinese can be found here.
Yesterday at the #autismchat, one of the things I said was ``High functioning means your needs get ignored. Low functioning means your abilities get ignored." I am by no means the first person to say something like this. Over at Autistic Hoya, there is a good cartoon about functioning labels. I think that over at Just Stimming, something along these lines has also been said. Cal Montgomery criticized a lot of the ways they're used in a movie review back in 2005. And of course, every time someone assumes high functioning/Aspergers because someone blogs, this gets brought up. It gets brought up because it's true.
I have traveled foreign countries alone, and done so competently. That doesn't mean I'm not Autistic. It means that the skills I have allow me to do that. I don't catch a lot of non-verbal communication. That's a skill I don't have so well. If the situation I face is needing to figure out how to get from point A to point B by public transit, I am in good shape. I'll function GREAT. If the situation is a crowded gathering where I need to politely interact with people, I might manage the length of the party (or I might not.) Then I go home and shut down. My functioning in that area is kind of cruddy.
How do you define high and low functioning? Is it by how easy it is to make an independent living arrangement work for that person? (what if the person never had a reason to live alone/independence is a myth anyways, but certain kinds of dependence are seen as natural) Is it by ability to navigate from point A to point B safely? (what if the person works from home, uses PeaPod, and doesn't need to go places alone?) Is it on being able to drive? (what if the person never had money to buy a car and try to learn, or if the person lives in a city where driving isn't needed?) Is it by ability to handle social situations? (what if the person just doesn't care?) Is it by ability to speak (sign language/typing/AAC anyone?) Is it by ability to blog? (That doesn't imply being able to drive, live alone, or speak, by the way.) Is it by whether or not the person has any self-harming or dangerous stims? (I pick at my skin as one stim, and yes, I've drawn blood. I have also banged my head against walls, though I've not done so hard enough to cause permanent damage.)
Is it by when someone learned to talk? (Once talking has been figured out, you apparently can't actually tell when the person learned by way of other traits...) Is it by the history of any other traits? (But wouldn't that mean that we're assuming the person's skills to be static? That's just not accurate.) Is it by IQ? (Does IQ even really mean anything useful anyways? It's history is basically a mess of ableism.) Is it by what society thinks we should be able to do? (what do they want, anyways? Also, society is made of fail sometimes.) Is it by what WE think we should be able to do? (We're not going to agree with each other... And it's not as if people listen to us much. They should, though.)
So, what are we defining functioning by anyways? We ALL have strengths and weaknesses. If I'm high functioning, you just ignore the weaknesses, and if I'm low functioning, you just ignore the strengths. Either way, we get hurt (and ignored!)
Edit: A translation of this post into Chinese can be found here.
Thank You, Liz Szabo!
So. Earlier I wrote a not-so happy post about the USA Today #autismchat not having any autistics on the panel of experts. I'm still not happy about that, but Liz Szabo, the person who pretty much ran the chat, commented on my post about it, and her comment was GREAT. As far as I'm concerned, since the autistic self advocates showed up anyways and people who came in with open minds learned a lot (like Liz!), it was worth it. Really. I don't demand perfection. If someone new to covering autism, as she says she is, misses the not nearly as well publicized self advocates the first couple times but is open minded and includes them once she figures out we exist, I actually think that's great. It means that person is way more likely to be an ally than anyone who excludes self advocates on purpose! And considering the number of autistic people who don't know how bad for us Autism Speaks really is, I can't really blame her for not having known. There is this thing called a learning curve. Learning curves don't make mistakes no longer incorrect, but they do make reasonable people more tolerant of earlier mistakes as long as the person really is learning. Blast, it's not like I get everything right. I just had the good fortune to know self advocates before I got into autism stuff and before I was diagnosed. Main point being, I think she has good intentions.
I mean, take this quote from her comment:
``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."
That's not someone trying to exclude us. It's just someone who hasn't looked for the people who are autism experts in the sense media uses and are themselves autistic (yes, such people exist!) Also from her comment:
``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."
Also not someone TRYING to exclude us because of not wanting to hear what we have to say/not caring what we think/insisting that we necessarily want to be cured even when we have said that we don't.
So, if you're reading this, Liz, I'm glad to have heard from you. You sound like an open-minded person who wants to cover the subject well. If you listen to actual autistic people, I consider that a huge success, even if said other autistics happen to disagree with me on nearly every count. I certainly agree services are important! (I just don't like all the organizations that talk about services.)
If you want to know why I don't like Autism Speaks, go watch the videos ``Autism Every Day" and ``I am Autism" (If you can track them down amidst the angry responses!) then look at the organization budget. Most of it is for fundraising or research, and most of the research is for cures or pre-natal testing. If you know the stats on how many babies who would have had Down's were aborted because of pre-natal testing, you might understand why autistics could dislike the idea of pre-natal testing for autism. Very little of their budget actually goes to providing services. Also look at their board of directors and at how much of their video time is actually autistic people speaking, which is what the name would make you think they are about. I know people who have been told they were too autistic to understand the issues at hand or who have been told they weren't autistic enough to be facing the issues, both by Autism Speaks people. Hang out on enough blogs written by autistics, and you will find that there are a lot of us who really hate Autism Speaks. (Help us get our voices on mainstream stuff despite them? We tend not to get much publicity from mainstream groups, who tend to listen to Autism Speaks, so most of our stuff is less well known. It's sometimes a bit of a reinforcing cycle.)
I mean, take this quote from her comment:
``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."
That's not someone trying to exclude us. It's just someone who hasn't looked for the people who are autism experts in the sense media uses and are themselves autistic (yes, such people exist!) Also from her comment:
``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."
Also not someone TRYING to exclude us because of not wanting to hear what we have to say/not caring what we think/insisting that we necessarily want to be cured even when we have said that we don't.
So, if you're reading this, Liz, I'm glad to have heard from you. You sound like an open-minded person who wants to cover the subject well. If you listen to actual autistic people, I consider that a huge success, even if said other autistics happen to disagree with me on nearly every count. I certainly agree services are important! (I just don't like all the organizations that talk about services.)
If you want to know why I don't like Autism Speaks, go watch the videos ``Autism Every Day" and ``I am Autism" (If you can track them down amidst the angry responses!) then look at the organization budget. Most of it is for fundraising or research, and most of the research is for cures or pre-natal testing. If you know the stats on how many babies who would have had Down's were aborted because of pre-natal testing, you might understand why autistics could dislike the idea of pre-natal testing for autism. Very little of their budget actually goes to providing services. Also look at their board of directors and at how much of their video time is actually autistic people speaking, which is what the name would make you think they are about. I know people who have been told they were too autistic to understand the issues at hand or who have been told they weren't autistic enough to be facing the issues, both by Autism Speaks people. Hang out on enough blogs written by autistics, and you will find that there are a lot of us who really hate Autism Speaks. (Help us get our voices on mainstream stuff despite them? We tend not to get much publicity from mainstream groups, who tend to listen to Autism Speaks, so most of our stuff is less well known. It's sometimes a bit of a reinforcing cycle.)
Wednesday, May 2, 2012
USA Today #autismchat : Seriously?
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
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