In many respects, I think the subject heading says it all.
I hear this a lot lately, primarily from undergraduate students who find autistic advocacy reprehensible and/or incomprehensible. In fact, at our protest this fall, someone actually came up to us and said, “If you can self-advocate, then you’re not autistic.” Way to disempower much?
Here is the wonderfully circular logic that has come to constitute much of my advocacy life lately:
Me: What you’re doing is hurtful.
Them: But we just want to help people like you.
Me: You’re not helping. Please stop.
Them: But we just want to help people like you.
Me: But you’re not helping.
Them: BUT WE JUST WANT TO HELP PEOPLE LIKE YOU!!
I’ve spent the past few months trying to devise smart-ass responses to this statement.
- But I just want to torture people like you.
- Oh! Yes! Of course! I’m sorry! I forgot that this was all about you!
- *cuing echolalia* BUT WE JUST WANT TO HELP PEOPLE LIKE YOU!!
And herein lies the frustration: Advocacy isn’t advocacy if it’s merely a synonym for self-interest. If the people you’re claiming to serve are objecting to your help, are telling you that you’re being hurtful… shouldn’t that give you pause?
I have no reason to be grateful for your hurtfulness. I shouldn’t have to grovel because you’re wearing a t-shirt with a puzzle piece on it, or because you’re raising funds to prevent people like me from existing. I shouldn’t have to look you in the eye, tear up, and utter an inflected “thanks” because it makes you feel good about yourself.
My lack of gratefulness isn’t an autism symptom. My lack of gratefulness doesn’t mean that I’m not disabled. My lack of gratefulness isn’t impoliteness, smugness, self-centeredness, theory of mindlessness, or some other bad-sounding, mega-autism, amorphous blob thing. I shouldn’t have to wake up feeling grateful every morning, as though gratefulness is some sort of requisite pre-condition for being developmentally disabled.
Would you feel grateful for people who want to “eradicate” people like you?
Would you feel grateful for people who refer to you and your loved ones as an “epidemic,” as a “global public health crisis,” as a “disease” more prevalent than “pediatric AIDS, cancer, and diabetes combined”? Would you feel grateful for people who make a career out of representing you and others like you as creatures of pity, contagion, and fear?
Would you feel grateful for people who ask you, in front of large crowds, how old you were when you were toilet-trained? How you manage to have sex? How you wake up every morning knowing that you are you?
Would you feel grateful for people who call your parents “heroes” because they didn’t put you up for adoption?
Would you feel grateful for people who start up college groups that patronize you? Groups that claim to be your “voice,” yet never even consult you? Groups that devise activities meant “for” you or your “benefit,” yet in their very design exclude you and people like you? Make-up parties, gala balls, sorority cookouts, sensory unfriendly films, massive and crowded walks — boisterous, clamorous, noisy events, events advertised to help you, all the while raising funds to get rid of you?
Would you feel grateful for people who claim you don’t exist, merely because you’re over 21? Because you’re a woman? Because you claim to have a sexual orientation?
Would you feel grateful for people who disprove of, and ardently protest, your decision to have children? Would you feel grateful for people who work to revise custody laws so that people like you can’t single-parent or adopt?
Would you feel grateful for people who call you mysterious, puzzling, special, and heroic — because you’re you? (And, of course, being you isn’t something they’d wish on anyone.)
Would you feel grateful for people who regularly describe your body language, ways of gesturing, and ways of interacting as disturbing, inappropriate, deviant, clinical, and abnormal? Would you feel grateful for people who tell you that the way you think, act, know, and sense are all wrong?
Would you feel grateful for people who segregate you from your classmates, people who claim that who you are as a person will have detrimental effects on your peers’ intellectual development?
Would you feel grateful for people who tell you that you’re an “exception” and therefore nothing you say even matters? Would you feel grateful for people who question your diagnosis simply because you disagree with them?
Would you — should you — feel grateful for people who constantly tell you how ungrateful you are?
Would you feel grateful for these people? Seriously? Truly? Because, if that’s the case, perhaps I can teach you how to flex your ungrateful mind muscles.
**
In other news: I’m back, after a small hiatus. Academic life has been a bit hectic (understatement) these past few months.
I’ve been having a really shitty day, but reading this made me feel better. Maybe I should try to have a blog again.
Thanks for the comment, Franny! And sorry to hear you’ve had a rough day. Having a blog has definitely helped me with crappy days. Ah, venting…
this is excellent Melanie. another thing that really makes me mad is hearing them say, “well, at least you’re high-functioning.” good grief already! the spectrum is not some stupid ladder!
Thanks, Christy! And totally agree about the use of functioning labels. The whole hierarchy-of-autistic-people thing is very upsetting!
As I like to tell them: “Oh, so this whole thing is about YOU, and YOUR WANTS, right? If you really want to help us, then FUCK OFF!”
Marc: Very nicely said. 🙂
Ha, I can’t decide which of your retorts I like better — #2 or #3.
(I don’t think they know we can be sarcastic, either!)
More seriously, I’m kind of surprised you’re getting such a hard line from undergraduates! You’d think people that young would still be in Learn About the World mode, and would want to hear what you have to say about being autistic, or about what autistic people most need.
I am sorry to hear that this is happening! I have yet to start bringing up a campus message about neurodiversity, but there are surely lots of Greek systems around and even the MIND institute, so I will expect some nasty confrontation when the day comes. But luckily I also have some close enough friends that know about my views and would care to stand up for me.
When autism awareness month hits, i hope I get a chance to voice our perspectives on the subject.
This is what I don’t get about (high-functioning) autism advocacy: activists identify with the medical diagnosis of high-functioning autism and at the same time reject the medical definition of autism. If you don’t want to have your personality medicalized, why cling on to the medical definition of your personality?
Because you want scientific proof that you have a personality? You want a reference source for your identity but not the medical baggage involved?
Why has autism become a site for identity politics anyway? If you don’t want a medical label, simply cease applying that label to yourself! Stop defining yourself as autistic! But wait, then you would have no model to ground your identity scientifically… Dang!
Maybe you don’t need to define your existence on this planet scientifically? Maybe you can exist without scientific evidence of your existence? Maybe identity could be defined in social as opposed to scientific terms? Has any of this ever occurred to you?
I just want to address the commenter above (mthr). You sound really angry. I’m not sure why you are angry-sounding, but your tone is really hostile, and that bothers me a lot. As a reader of this blog, I think you might consider your tone and the effect of this tone on the blogger and her readers. I think that the author of this blog has indeed thought of what it means to identify herself as autistic and considers her identity to be both socially constructed and scientifically/medically defined. In fact, it’s clear to me that she spends a ton of time considering what her identity means to her and to people around her. That’s what she’s studying (partially) as a PhD student in rhetoric. I’m not autistic, but I understand that autism has both a psychological definition and a socially-constructed definition. Personality is a really difficult thing to talk about and to understand, but it’s also worth considering in more detail and complexity than what most “autism fighters” do. It certainly doesn’t have to be an either-or proposition. That’s why it’s often referred to as “the autism spectrum.”
In closing, mthr, I just want you to consider that hostility is not the best response to anyone. It’s uncivil and impolite. Just because we’re in the digital world doesn’t mean we have to treat anyone poorly or without compassion. I worry about why you feel you need to express this anger and hostility to someone you don’t know. I’ll probably be thinking about you, mthr, for awhile. I hope that in a future blog post that Aspie Rhetor will address your comments, but I’m guessing that she will probably need awhile to think about how to address you in a way that does not react to your hostility.
I think you should google the term “tone policing”, as well as “Derailing for Dummies”.
Because you want scientific proof that you have a personality? You want a reference source for your identity but not the medical baggage involved?
As soon as you said “personality’ i stopped reading. Let me make this clear. ASDs are not a personality disorder. This is not about making my “personality’ proven. But to stop demonizing my disability my developmental disorder.
Why has autism become a site for identity politics anyway? If you don’t want a medical label, simply cease applying that label to yourself! Stop defining yourself as autistic!
Question would tell a woman if she didn’t want to be discriminated on the basis of her sex, would tell her to stop identifying as a woman? How about a gay man or Muslim? Doesn’t too ethical huh and bit bigoted doesn’t?
You have assumption that Aspie Rhetoric and I and the various autists her are self-diagnosed and that we picked the label to be trendy and cute. No. I myself have the DX of Autistic Disorder, many of us have range from classic to aspie. And may of us are on the same page. We never “labeled” ourselves. this is what the society calls us, and yes we made it our identity.
I believe the best analogy is using the phrase “Making lemonade out of lemons”
We reject the medical model of disability because it doesn’t apply. We have a social disorder, therefore it is logical to make an conclusion that the social model makes more sense. In truth I believe most disabilities have similar issues and socio-ethics under the social model of disabilities.
TL;DR: HATERS GONNNA HAAAATEEEE
The social and the scientific are not mutually exclusive. Disorders and disabilities are not diseases.
I came across your site tonight because I am doing a paper for my English class on the autism puzzle piece logo; I am a mother of a seven year old son with autism, and I have a ring that has puzzle pieces locked together, and I wear it every day because it is my connection to him, the same as I have a tattoo of all three of my children on my ankle as my connection to THEM. Your blog came up when I googled “Puzzle piece controversy”. Having said that, I just want you to know that I loved what you had to say, and it made me cry. It made me cry because my son is completely non-verbal, and I wonder sometimes what he is feeling or thinking, and can’t help but wonder if he might feel the same as you do (on his own seven year old level). Anyway, thanks for your perspective…I’ll be bookmarking your blog 🙂
I’ve started reading your blog and watched the video of your protest. There was so much emotion communicated. It inspired me to be a stronger self-advocate; first to myself and then to others.
Thanks for standing out there on the front lines of defense. I’m joining, in my own way.
Thank you.
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