I can pretty much tell that I'm wasting my time talking to a parent if he or she says something like, "I have a child with autism. I love him with all my heart. I could never, possibly be bigoted against people with autism. It's very cruel and hurtful for you to say that!"
Because here's the thing. I'm autistic. I can be bigoted against autistic people. I'm gay. I can be bigoted against gay people. When I was visiting my parents, and volunteers from a gay rights group came to the door, my dad rolled his eyes, in front of his openly gay son, and said, "I don't think we need to listen to that." When my mom told my aunt recently about my autism, my aunt immediately started talking to me about how violent autistic people are. You may think your family is better than mine, but I think these things just run deep in society, and we're part of it.
My domestic partner Max is my favorite person. He's smart, funny, handsome, sweet. He's also been in great pain for much of the past week, with an infection that required him to spend one night in the emergency room and may require additional hospitalization. As we fight these things, I think how fortunate both Max and I are that we do not have AIDS, that we are still alive.
People want to forget how many of us died.
They want to forget the murderous silence of our governments.
They want to believe that the gay men who died of AIDS in the 1980s were so promiscuous and irresponsible that they more or less deserved it.
I am reminded by the comments on this Towleroad piece on the recent death of New York City mayor Ed Koch that there are many gay men who want to believe that their brothers who died, who are still dying of the plague, were totally alien from themselves. I'm guessing that lots of those guys would respond like those parents who drive me crazy do: "I can't possibly be bigoted against gay men. I'm gay. But those guys died because they were irresponsible."
My friend Dean, who died when I was 25, was infected by his first boyfriend when he was sixteen. Not in a bathhouse. Not with drugs. Young love. And he died. He was a good guy, so much nicer than me, would have made the world so much brighter.
He was not garbage.
He did not deserve to die.
And no one deserved to die as David France describes gay men dying by the thousands in New York City:
We regularly received phone calls from St. Vincent patients complaining that staff members fearing the disease was airborne refused to bring them food, instead piling their trays outside their doors, or that terrified nurses wouldn’t bandage their wounds or change their soiled linens. It was like something out of a Saramago novel. I personally brought this information to Koch myself, as the first journalist with gay-media credentials to address him in a Blue Room press conference. He responded explosively. “Don’t be ridiculous,” he told me.
Those were the early days. As the epidemic mushroomed, the city’s hospitals simply ran out of space for all of the patients, and again he was silent. Deathly ill people were routinely turned away. At some hospitals, patients were lined up on gurneys along the emergency room hallways for days on end awaiting medical care that never came. When things went south, we all knew there was only one funeral home in the city — the gentle people at Redden’s on 14th Street — where we could bring our friends’ remains.
I do not recall Koch ever acknowledging these medieval conditions. He surely never took action, nor did he spare an ounce of sympathy for us in the trenches, not in public at least.
What does this have to do with autism?
Charli Devnet's piece about "The Dark Side of Aspergers" is what it looks like when members of a marginalized group have absorbed the biases of the majority:
If Adam Lanza had only destroyed himself, no one would have noticed. He would have silently departed this world, leaving “few footprints in life,” as the New York Times put it. If he had only killed his mother, well-meaning people would have shaken their heads and said exactly what they said about my neighbor, that here was another troubled young man who “snapped.” It is because Lanza exploded in such an unusual, deliberate and almost apocalyptic way, that we are so shaken. If we allow that Lanza might have been on the autistic spectrum it might help us take a candid look at the dark side of living on the spectrum.
Aspies are prey animals, said Tony Attwood at an Asperger’s conference in 2012. We are much more likely to be victims than villains. Wounded prey may, however, grow desperate and strike back. A lifetime of being bullied, rejected, and relegated to the periphery of life can give rise to anger and bitter fantasies of revenge, especially perhaps among lonely young autistics that have grown up in a culture where violence is glamorized and who may turn to perfecting their skills at violent video games in lieu of a social life.
"Self-hatred" is most common term for this, I think, but that seems wrong to me.
Autistic people and gay people, etcetera, are part of a world which is biased against us.
There is no good reason to think we should be immune from that bias, and we don't have to hate ourselves to experience it.
Max is older than I am. He has been openly gay for about as long as I have been alive. He has fought courageously and successfully for our rights. He was one of the first who got top security clearance when President Clinton reversed the ban on gay people having it in the 1990s. And he still carries bias against gay people
I disagreed when people went to court to try to get Proposition 8 overturned after it made same-sex marriage illegal in our state. I like elections, and I think ultimately minority groups win by making elections stronger, not by trying to undo them when we don't like the way they go. But what happened in the trial was that gay people laid out the difference that having full access to marriage made in their lives, in their status, in the eyes of their families.
Max is my domestic partner. It is not yet legal for him to be my husband. And he needed that trial to understand that separate but equal is not okay. He needed legal testimony to lose that piece of his bias against people like himself, after decades of fighting for our rights.
Think about that.
And don't tell yourself that you can't be biased against autistic people because you are one, or because you are related to one.
Note: I have removed the name and the blog name of one person from this post. I am not doing this because I regret having included it originally or because I am concerned about the lynch mob of that person's friends who have been attacking me. I'm doing it because he apologized and because I want to make it easier for people to listen to each other. I will also be removing the comments from this post, because many of them were made before that person apologized.
I don't usually do these things.
I share this message from Ari Ne'man and The Autistic Self Advocay Network with you with Ari's permission.
Last May, I and other advocates crashed a party – a twitter party, to be exact. USA Today had put together a live twitter chat with the nation’s “top experts” on autism – a group that notably excluded any actual Autistic people. Unimpressed, the live chat was crashed by a few dozen Autistic adults who did a great job communicating that old time “Nothing About Us, Without Us!” spirit. Liz Szabo, the USA Today medical reporter moderating the live chat, responded fairly well, apologizing and making sure that self-advocate participants were included after all. Later that day, I got a very nice e-mail from her, promising to learn the lesson about self-advocate inclusion for the future. Mission accomplished, right?
Well, perhaps not so much. Today, USA Today ran a front page feature by Liz Szabo on mental health policy, encompassing 3,024 words over three articles and including color photos, infographics and an extensive table analyzing mental health policies across the nation. What it did not include, shockingly, was the voice of a single person with a psychiatric disability. Given the topic – one article uncritically makes the case that involuntary commitment laws must be strengthened and expanded – this is a serious flaw and one that is undeserving of a newspaper of USA Today’s national stature.
The rationale behind an error like this is baffling, to say the least. It seems hardly credible that the author could not locate a single disabled person. One understands the pressures faced by modern journalists in these times of newsroom cutbacks, but surely they can do better than this. Furthermore, the failure to speak or present the opinions of a single opponent to the expansion of civil commitment laws is unbelievable, given the stakes. Does USA Today believe that expanding institutionalization and forced treatment is so uncontroversial as to not deserve the presentation of both sides? What possible explanation could be offered for such shoddy work?
Regrettably, the problem extends beyond Szabo and USA Today, both of whom have good intentions. Most journalists reporting on disability issues today come from backgrounds in health or medicine, where the working assumption is that physicians should drive the conversation and little difference should exist between parent and self-advocate perspectives. For many in the media, reporting the voices of those most directly impacted is an afterthought, too often forgot about in the rush to meet a deadline. This outlook has real and practical consequences.
In the aftermath of the unspeakable tragedy in Newtown, the news media plays a disproportionate role in shaping the public conversation. Policymakers and the general public look to newspapers to help determine practical solutions to challenges like gun violence. When journalists ignore the communities they are charged with reporting on, we all lose an opportunity to become better educated on the issues that face our country. Beyond that, ill-advised policy solutions are uncritically promoted without thought to their unintended consequences.
This is not journalism. USA Today’s readership and the public at large deserve better. As the media continues to stoke public fears about disabled people in the aftermath of Newtown, it falls to us in the disability rights movement to make sure that they get the message. Just as our community speaks up when Autistic people are left out of conversations about autism, we should be speaking up when other groups of disabled people are excluded from conversations in which they should play a major role. In the words of our nation’s founding father, Benjamin Franklin, “We must all hang together – or we will sure hang separately.”
Annoyed? Angry? Don’t just sit there and take it – do something! Here are some options:
- Tweet your concerns to Liz Szabo, the USA Today journalist who wrote the mental health pieces, at @LizSzabo – use the hashtag #aboutwithout so we can track your interest. Be polite in your comments – but be heard!
- Send USA Today a Letter to the Editor by e-mailing firstname.lastname@example.org. Include your name, address and daytime and evening phone numbers (if you cannot use the phone, note this and provide an e-mail address that you check frequently). The newspaper’s website notes that letters of 200 words or less have the highest likelihood of being accepted.
- E-mail Brent Jones, USA Today’s Public Editor, with your concerns about lack of self-advocate representation email@example.com.
It's supposed to be about a spelling bee.
Michelle Nelson is supposed to be writing about the first autistic kid to compete in the spelling bee at a local elementary school.
Instead she demonstrates how we are teaching the public to fear autistic people.
First of all, this should not be seen as news. This is not a story about a kid who won his school's spelling bee. He's out on the first word. It's "Martian."
This is depicting autistic kids as so disabled that managing to stand on stage and spell a word is beyond most of them. And, although that is true for many autistic people, I would guess that the number of Scripp's Spelling Bee winners who are off the autism spectrum is lower than the number who are on it. Daniel Vance, who competed in 2004, was open about his Aspergers diagnosis and came in 16th in the country. Dylan's special interest was spelling when he was four. Spelling is a weird splinter skill that involves rote memory and patterns. Spelling bees are, in part, a competition to see who can act the most autistic.
Teachers hurt their autistic students by having low expectations and failing to encourage them to participate in school activities:
This is Ivar Lovaas's version of autistic success-- a child who is indistinguishable from his peers.
Autism Speaks is teaching people that autistic people are dangerous by teaching them that we lack empathy:
Fort Worth Weekly staff writer Jimmy Fowler sees the DSM-5 committee's choice to eliminate the Asperger's syndrome diagnosis as a chance to denigrate the entire autism spectrum:
Asperger’s is now just plain old autism, a very real and unromantic condition that nobody wants to claim at a dinner party.
I hope you’re happy with yourselves. This is why you never get any nice clinical terms to play with, because you overuse them until they’re meaningless. Not since the Winona-Ryder-in-the-bug-house flick Girl, Interrupted popularized “borderline personality” has everyone secretly yearned for such a quick, simple, not-too-scary explanation for social awkwardness. Is your co-worker unfriendly? Calling him “just a little Asperger’s” made his rudeness easier to take. Is your significant other emotionally unavailable? A wistful pronouncement of “Asperger’s” made that coldness totally not her fault, and somehow potentially treatable, too.
Does he work in a reference to Adam Lanza?
What do you think?
Please contact editor Gayle Reaves and ask her to take this piece down. And maybe ask Mr. Fowler to talk to an autistic person.
The contact page for the paper is here.
Note: I have recently created an email list for people who want to be notified when I have action alerts like this. If you would like to be added, please send me a message here.