How It Works

NTs with Big Ideas: We decided to create this autism-related service/ make this autism-related documentary / write this autism-related policy brief.

Autistic Advocates: Was it developed in consultation with Autistic people? Can Autistic people use this service? Are Autistic opinions featured in this documentary/piece of writing?

NTs with Big Ideas: No, we chose to focus on non-Autistic parents and professionals.

Autistic Advocates: Why on earth would you exclude Autistic people from this thing which is about autism?

NTs with Big Ideas: Well, we had limited resources, so we could only focus on one stakeholder group. And we chose to focus on non-Autistic parents and professionals (is that two groups? Oops, I meant we could only focus on two groups) because — um…

because parents and professionals have all the spending power

because parents and professionals have the biggest lobbies

because if we consulted Autistic people, they would want us to provide a different kind of service than the kind we want to provide

because if we consulted Autistic people, they would want us to take out this ableist rhetoric which we want to use

because it never even occurred to us to ask Autistic people about this thing

… because we did.

Wanting you to listen to me doesn't mean I don't want to listen to you

I've been reading people's blog posts about the TPGA Dialogues, and I think that some people think that I think something that I don't think. (How's that for Theory of Mind?) I've seen a couple different people summarize the original disagreement that Robert and I had by saying: "Robert wrote a post about how the R-word can hurt parents of special needs children, and then Zoe responded saying that non-disabled people have no right to be offended by the R-word."

I'd just like to clear this up because that's really not something that I think at all! I think the R-word is offensive, and that quality can/should/must be recognized by everyone, not just people with disabilities. I would never ask anyone not to be offended by the R-word. Please, get offended! Do it loudly! Make sure everyone knows you're offended! We need as many people as possible speaking out about this.

Here's the thing, though: I don't think that it's okay to talk about the offensiveness of the R-word without talking about how it hurts disabled people. That was my criticism of Robert's post: he wrote a lengthy essay against the use of the R-word, but the only reason he gave was that non-disabled relatives of disabled people could be hurt by hearing it. And I don't think that was appropriate, just like I don't think it's appropriate to talk about sexism and never mention the effect it has on women, or talk about racism and never mention the effect it has on people of color, or talk about homophobia and never mention the effect it has on queer folks. When you talk about prejudice, you can't ignore the people who experience it first-hand. That's all.

People have also said that I wanted Robert to "write from the perspective of a developmentally disabled person" something which he, as a neurotypical person, clearly can't do. Or they say that I expected him not to write from his own perspective. This isn't really true either. I appreciate the fact that parents/siblings/caretakers write about their experiences - they are important experiences to share. But they are not the only experiences of disability that it is possible to have. What I would have loved to see from Robert would be an acknowledgement of other people's experiences relating to the R-word, especially the people who the word refers to. In the entire post, he didn't mention that disabled people are affected by the use of the R-word at all, an oversight for which he later apologized. I was upset about this oversight, not because he was writing from his perspective, but because he left out other perspectives. That's all.

Non-disabled people, I really don't want to silence your voice. I want to hear it! But I want you to hear my voice too. So please speak out against the R-word -- but don't forget to mention the effect it has on disabled people. And please, write from your own perspective -- but don't forget to acknowledge ours.

Free CeCe

More people than usual are visiting my blog right now because of the TPGA dialogues. That's great because I just found out about something really important that I think you all should know about. It doesn't have to do with autism. But it does have to do with oppression and with human beings having rights. If you can, please please keep reading.

Here's what's going on, from the website SupportCeCe. WARNING: this quote describes a really foul violent incident, which involved racist and transphobic slurs and people getting hurt.

CeCe McDonald is a young African American transgender woman charged with “second degree murder” after an incident that began when she was violently attacked because of her gender and race.

CeCe is a creative and energetic person who, before her life was so unjustly interrupted, was studying fashion at MCTC. She had a stable home where she lived with and helped support four other African American youth, her family. CeCe’s family describes her as a leader, a role model, and a loyal friend. She is known as a wise, out-spoken, and welcoming person, with a cheerful disposition and a history of handling prejudice with amazing grace.

Around 12:30 am on June 5, CeCe and four of her friends (all of them black) were on their way to Cub Foods to get some food. As they walked past Schooner’s Bar in South Minneapolis, a man and two women (all of them white) began to yell epithets at them. They called CeCe and her friends ‘faggots,’ ‘niggers,’ and ‘chicks with dicks,’ amongst other things.

As they were shouting, one of the women smashed her drink into the side of CeCe’s face, slicing her cheek open, lacerating her salivary gland, and stinging her eyes with liquor. A fight ensued, with more people joining in. What happened during the fight is unclear, but within a few minutes Dean Schmitz–one of the attackers–had been stabbed.

CeCe was later arrested, and is now falsely accused of murder

For a month, CeCe was kept in solitary confinement “for her own protection”; she had no say in this matter. Finally, she was transferred to a psychiatric unit in the Public Safety Facility. It was nearly two months before she was taken back to a doctor to check up on the wound on her face, which by then had turned into a painful, golf ball-sized lump.

Later on, CeCe’s friends were harassed on the street by people they recognized from the scene of the fight. Individuals circled the block that CeCe’s friends were walking on and called them ‘niggers’ and ‘faggots’ and told them to ‘go back to Africa.’ When they attempted to wave down a passing squad car for assistance, the officer driving the car said he would not help them.

Everything about this is wrong, down to the murder charge. Dean Schmitz died after initiating a transphobic, racist attack on CeCe McDonald and her friends. It's probable that CeCe or someone in her group killed him, perhaps by accident, while he was assaulting them. That is not murder of any degree. That is self-defense.

Here's the thing: it could so easily have been CeCe who died that night. Trans women of color die all the time for no other reason than because cis white men want them dead. And when the scenario plays out that way, it's not uncommon for the murderers to face charges that are a lot less serious than second-degree murder -- if the police bother to find them at all.

I'm furious and sad that these people attacked and hurt CeCe and her friends because of their race and gender identities. I'm so glad that CeCe survived this attack. Now she is being punished for keeping herself alive, and she needs our help.

Here are some things you can do:
- Go to http://supportcece.wordpress.com and donate money towards CeCe's bail, so that she can get out of jail and back to her family.
- Write a letter. You can write to CeCe to express your support, or write a letter to the editor about her case.
- You can distribute fliers and literature to let people know what's going on.
- Finally, if you have a blog or a tumblr or a twitter or a facebook or email or a phone or if you see people in person, spread the word. Post links, reblog, tell people about it, ask them to donate, ask them to visit the SupportCeCe website.

Let's all do something. Please. Thank you.

TPGA Dialogues: Adventures in Talking to People

This is as good a time as any to mention that this week we kicked off The Self-Advocate & Parent Dialogues, which is a series of letters between me, Ari, and Robert Rummel-Hudson (the parent advocate who I had that big fight with last month). The Dialogues are being hosted at The Thinking Person's Guide to Autism. I am happy -- and frankly, really surprised -- to say that I think they are going well.

The reason Robert and I agreed to do these Dialogues is because we were both really unhappy with what happened last month -- a bunch of disabled people and non-disabled parents yelled at each other a lot and then went back to their corners fuming about how they would probably never be able to work together. The thing I'm discovering, which is interesting and says a lot about the internet I think, is that it's easier to do that than to hang on and have a long conversation that involves a lot of listening.

I've seen people commenting that the Dialogues posts made them cry. I've cried, and gotten frustrated and depressed, over some of the things that people have said. It's hard to reach out and really try to engage, because that means you won't have your defenses up, and it will hurt more when someone, for example, starts getting all Suddenly Specific Definition Fallacy on you. I think for a lot of people writing posts or participating in the comments, the Dialogues have been a process of engaging, getting hurt, licking wounds, and then coming back to engage again. But so far, people are coming back. And that makes me pretty happy.

Here are the posts so far:

first I wrote a letter
then Robert
then Ari
then me again
then Robert again

Check it out for yourself and let me know how you think it's going.

Ideas for Supporting Disabled Students in School

[I wrote this last semester but forgot to post it. In my Intro to Special Education class, we were asked to generate a list of ideas that might help disabled students, especially in inclusion classrooms. Here's what I came up with. I'd like to hear your ideas!)

1) Making social education a standard part of elementary school for disabled and non-disabled kids, instead of simply packing the disabled ones off to "social skills" classes alone. Inclusive social ed could cover stuff that disabled kids tend to have trouble with, like how to tell when someone is upset and how to take turns in a conversation, as well as stuff that non-disabled kids tend to have trouble with, like how to be kind and not bully other children.

2) Lesson plans which incorporate many different kinds of learning (visual, auditory, kinesthetic, musical, artistic, verbal, etc.) would allow children with all kinds of brains to be in the same classroom together. The kids would each have time to learn in the way they were most comfortable with, and develop their strengths. But they would also work on their weaknesses, learn from each other, and develop many different areas of their brains.

3) Entirely getting rid of social conventions for proper classroom posture/behavior. Do not require students to sit up straight, stare at the teacher, or be perfectly still. Allow students to stim, sit on the floor or on top of their desks, stand up, or move around if this facilitates learning. This might require some negotiation to get the students working together and not distracting each other, but I think it would let a lot of people come into inclusion classrooms who are being kept out because their behavior, although not harmful, is considered "inappropriate". It would also contribute to raising a generation of people who don’t feel prejudice around non-standard ways of moving. I think this would reduce ableist discrimination when these children grow up.

4) Giving accomodations that have to do with time. I have the most questions about how to implement this particular idea. People with autism and other brain disabilities often have difficulty with time management, and we also often think more slowly than NTs, so we may take longer to perform a given task. This can make it difficult or impossible for us to do the same amount of work as NT peers, even if we have mastered the same amount of information. I would like to research and think some more about accomodations that allow some disabled students to turn in different volumes of work than other students, or to turn in alternative assessments in forms that are not so taxing on their brains.

thoughts about breaking the internet

First of all, Julia wrote a beautiful post which expresses her frustrations about online conflicts between self-advocates and non-disabled parents. Yes, it is angry, and its anger is perfect and honest because so many of us have been hurt and we are angry right now. Please, please read it.

Now I’m going to talk about breaking the internet, and why I’m scared that for me, the internet will never get un-broken.

I didn’t want to start a big fight where everyone blew up at each other. I certainly didn’t want to come across as a parent-hating separatist, which, to some people, I did. What I did want to do was point out that when non-disabled people talk about ableism, it’s not okay to only talk about the impact that it has on them (and other non-disabled parents and siblings).

I was surprised at how many people disagreed with that idea. I'm not surprised anymore, but I am so, so sad. And I'm tired. And yes, I am angry too.

A lot of people are telling me I should write more carefully so as not to upset parents, but often these are the same people who are saying very hurtful things about me and my fellow self-advocates. People are telling me that I have to “look at things from the parents’ point of view,” but sometimes they seem unwilling to consider mine.

I found a gem of a blog post about this issue which included the remark, “Sadly, these ‘self advocates’ are only able to see their own struggles from their own perspective.” So I am being chastised for failing to view my own experiences from someone else’s perspective, by people who are defending their right to view make their own (non-disabled) perspective the focus of conversations on disability. Does anyone else see this as unreasonable?

I feel that for autistic people speaking out, it is only safe to tell our personal stories, that they might serve as an “inspiration” to others. If we engage with issues of policy or politics, we are told that we are speaking of things we know nothing about. We are telling parents and professionals how to do their jobs, and how dare we assume that we know better than they do?

It also seems to me that there is a very limited range of emotional expression that is acceptable. If we are angry – and I’m not talking about name-calling and swearing, just emotion – we are told that our anger makes our arguments invalid. If we are blunt and forceful, we are told that we will catch more flies with honey than with vinegar. I see people commenting about this whole mess and saying “how can you expect us to listen when you are so angry and so impolite?”

It’s true that I expect people who are interested in issues of autism and disability to listen to me. Not because I’m polite or because I will make them feel good, but because when they talk about autism, they’re talking about me, and they talk about me all the time. If you’re going to spend a lot of time talking about disability, you should listen to what disabled people have to say, otherwise – and I’m going to be blunt here – how will you know what you’re talking about?

I don’t know how we (the community of people who blog about disability from various perspectives) can resolve this conflict in an equitable way. What I do know is that I truly, desperately want to engage in productive discussions with parents about issues that matter to all of us. But I’m not willing to soften my opinions in order to do it. I don’t want to be cruel, but I will be blunt and I will be straightforward. I will not stop reminding non-disabled people of their privilege. I will hang on as tightly as I can to all the dignity I am allowed.

You can’t make a fist with your hand held out. You can’t beg for dignity. It doesn’t work like that.

Non-disabled parents, I don’t hate you, I promise. I really do want to have this talk with you. But you have to meet me halfway.

The R-word and Perspective-Taking: Whose Perspective Are We Taking?

It’s amazing how much two people can disagree when they start from the same premise.

Rob Rummel-Hudson’s blog post on the movie “The Change-Up” starts off just fine. He quotes an offensive line from the movie and states his opposition to its use as humor. For future reference, the line in question is this: a man viewing his friend’s newborn twins for the first time asks, “Why aren't they talking? Are they retarded? This one looks a little Downsy.”

So yeah, that’s pretty vile. Up to this point, the author and I are in agreement. The problem begins when he starts to explain his objection to the readers. His reasoning goes like this:

“Imagine a parent with a child who has Down syndrome… let's say it's a mom, one who spends her days, her years, taking care of a child, a very special child in every sense of the word…. She appreciates edgy humor, and she liked The Hangover, so when a new movie by the same writer comes out, she decides to take a few hours out of her weekend and go see it.” Rummel-Hudson then asks his readers to imagine how this woman feels when a character on the screen delivers that particular line.

That’s right: the R-word is wrong because it’s offensive… to non-disabled people.

To me, this is as ridiculous as if the author had critiqued the movie’s (doubtless plentiful) sexist humor by writing, “Some of the men in that audience have wives and daughters! How do you think they feel?”

Because, what about people who actually have Down Syndrome? Don’t they go to movies? Don’t people with intellectual and developmental disabilities, who have felt the impact of the R-word firsthand, also appreciate edgy humor sometimes? I’m sure that hearing this kind of language disturbs many non-disabled people, but that doesn’t mean they understand the experience of being used as a punchline.

Rummel-Hudson makes sure to give us all the juicy details of the misery that disability has wrought in this hypothetical mother’s life. He tells us that she suffers when others judge her child, that the strain of raising a disabled kid has most likely damaged, if not ended, her marriage. She has trouble finding a babysitter, and her family members without disabled kids don’t understand what she’s going through.

The author seems to feel that for readers to truly understand the R-word’s impact, they must know that having a disabled child is a truly terrible fate. Shame on those scriptwriters for bringing one more tribulation into the life of this hypothetical martyred mother! Isn’t just having a disabled child bad enough?

Framed like this, the R-word issue has nothing to do with respecting people with disabilities, our identities and our language preferences. The use of the R-word in movies becomes just another way that our existence makes non-disabled people’s lives harder.

The author says that the hypothetical mother he describes is appalled when her fellow moviegoers “think her family's pain is appropriate as a punchline.” Her family’s pain? For disabled people, this type of humor strikes directly at who we are. We, in ourselves, are the punchline. What does the hypothetical mother know about that?

The author says that the hypothetical mother feels isolated by “the ones who will always place her and her child and her family apart,” that this humor reminds her of her separation from society. Her separation? Parents of disabled kids are coddled in this society, spoken of as martyrs and given the benefit of every doubt. Even if they abuse their children, even if they kill them, they will have plenty of champions declaiming to the national news that the unbearable strain of a disabled relative excuses all possible actions. It is this mother’s hypothetical child who is isolated, viewed as a freak, shunted into segregated schools and housing, condescended to, joked about. The mother cannot possibly understand what this experience is like. What does she know about isolation?

I may be told that my response to this post indicates that I don’t have enough empathy for parents. As an autistic person, I’m used to having my opinions pathologized as a lack of empathy or an impairment in perspective-taking. In all fairness, however, I would like to point out that anyone who wants to take a lot of time to discuss the impact of ableism on non-disabled people is doing the exact same thing. I understand that some non-disabled folks have a hard time understanding a disabled person's point of view, but that doesn't make our perspectives any less important. If you can’t understand why a remark like this hurts a disabled person more than it could possibly hurt their mother, maybe it’s your perspective-taking skills that need some work.