3/4/2012 Updated, up front.
The woman who wrote the "Autism Can #Suckit" post has made a remarkable apology. You should read it: The Evolution of an Apology
2/29/2012: Updated: see bottom of post
A woman in my blogging circle has lupus. About a year ago, she started using the hashtag #suckit to publicize a fundraising effort for lupus research, even having a #suckit label on her wheelchair.
Lupus has now become our arch nemesis. And our family is dedicated to kicking it's ass. No one likes what it has put me through- 3 surgeries- 5 hospital stays- countless pills, weekly injections and even chemo. Yes, Lupus can suck it.
For the rest of Erin's SuckItLupus posts, go here. The phrase, with the hashtag and suckit all one word, seemed to become popular about three years ago:
Denise even published a #suckit list. Some people use it to talk to diseases in their lives:
- Type 1 Diabetes can suck it
- Type 1 Diabetes hypoglycemic episodes can suck it
- 98% of the time, this family's life with multiply-disabled children is great, but the 2% can suck it.
- Cancer can suck it
- Suck it, cerebral palsy
You get the picture. Did these posts start the slightest bit of controversy? No. The phrase has picked up in popularity recently, at least in some blogging circles.
Back in 2010, my blog-pal Ellen Seidman (who writes Love That Max) wrote a blog-post An ad campaign for kids with special needs? Bring it on! In that blog post, she wrote the words,
I could see a whole "Suck it!" campaign:
Suck it, cerebral palsy!
Suck it, autism!
Suck it, Down Syndrome!
Suck it, PDD!
Suck it, Tourette's!
Did that cause controversy? No. Why? Possibly because the language was in the context of an awareness/acceptance campaign.
Recently, an autistic child made a huge step forward, one his parents and teachers had been working toward for years. His mother, overjoyed, announced to the world (via social media) her joy over her son's accomplishment, and her determination that he will continue to make similar accomplishments, with the following:
"DO YOU HEAR THAT AUTISM?
I’m going to teach my son to read, so SUCK IT.”
And that's when the conversation took its first turn toward ugly. An autistic adult questioned the mother about her use of "suck it" relative to autism, and then the mother had a choice: to hear what the autistic had to say about that kind of language, or to respond with hostility, inaccurate declarations, and distortions of what neurodiversity and autism acceptance really means. The mother chose the latter course.
Many autistic adults are quite clear that while they value their own autism, they also have significant challenges . One clear example was written nearly two years ago by Corina Lynne Becker, What I Want People to Know, which has the following passage:
I want to be very honest with you. I am an adult living on social assistance, in a shared accommodation run by a non-profit housing organization. Despite being highly educated, I find it difficult to find and maintain a job on my own, and I’m not even sure that I ever will. I struggle to survive with few to no supports, mostly my family and the little that some organizations have been able to provide. It is, at times, very and extremely hard. There is a lot to remember, and each minute, each second, costs me. It costs me strength and energy, to maintain social skills, to remember how to do things, process information and formulate answers. It takes a lot of work, as I’m sure most parents of autistic people can understand.
The parent's claim to love her child, and value autistics, while telling autism to "suck it" has the same tone, and the same inevitable failing, as the "hate the sin but love the sinner" cliché.
When a parent who has demonstrated a profound misunderstanding of neurodiversity writes, or says, that she wants to "get rid of autism" it's hard not to believe that the parent is thinking of getting rid of autistic people. I know how I would feel if somebody said that of me.
Being "intensely autistic" -- extreme difficulty with communication, difficulty with sensory and emotional regulation, and so on-- is hard on the autistic person. Parenting a child with intense autism is hard. But there are many parents of intensely autistic individuals whose goals are not to "get rid of autism" but to help their children be "at ease in their skin" and to make the most of their gifts. Note: not get rid of their autism. It's not a subtle difference.
Update:
Melody Latimer, an autistic adult who has autistic children, has written "Why My Child Isn't Like Yours Isn't the Point".
What I do know is that there is no amount of hate of Autism that will make your child better. There is no amount of vitriol put into treating your child that will not radiate to your child. There is nothing you can say that I have not been through myself, with one of my children, or have seen one of my friends go through.
Robert Rummel Hudson, writing at Support for Special Needs, has written No Offense, imagining a mythical conference where no one was allowed to express offense at another's words
Now, of course, that’s not strictly possible. Of course people would be offended; if the exchange of opinion were to flow freely, someone would be almost certain to find offense at something. But at this conference, no one would be allowed to stand up and say “That is offensive, the thing you just said!” No one would be able to clothe themselves extravagantly in their their hurt feelings. If you didn’t like what someone had to say, you would be free and in fact strongly encouraged to debate the merits of their position. But our conference’s one rule would mean that standing on the marble platform of deep and personal offense would not be allowed. The first person to express outrage and offense would be booed out of the hall, and their box lunch privileges would be revoked.
In a tweet, Carol Greenburg @aspieadvocate responded to Robert Rummel Hudson's dream (I've expanded the language beyond 140 characters).
There is no offense-free zone possible, because conflict is inevitable. Resolving it with compassion is hard work. None of us are excused from this work.
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