Disability Catch-22s

This post was first published on the AAPD intern blog.

So here are some things a lot of people don’t know about me:

About twice a month I walk in front of a moving car by accident. About twice a month I choke while drinking.

Here’s another interesting thing: when I try to talk about autism, and why I as an autistic person should have a voice in the discussion of autism, some non-autistic parents and professionals get mad at me. They say, “You’re a college student, you clearly don’t have the same kinds of problems that someone with Real Autism does. Your autism must be so mild that you are irrelevant to this conversation.” And then they start talking about what Real Autism looks like, often referencing their own children, and they’ll say things like “My kid has Real Autism that is so very real, he is unaware of dangers and might wander into the street and get hurt!” or “I worked with this little girl who had Real Autism, and she was a choking risk because she had difficulty swallowing!” And then they say “Clearly, these things never happen to you, because you can write a research paper.”

I don’t understand the ideas people have about disability sometimes.

Like, obviously not all autistic people are the same, and our disability affects us all a bit differently. But at the same time I find it frustrating that when disabled people try to advocate for ourselves, we are often immediately dismissed as “not disabled enough” just by virtue of the fact that we have opinions we want to express. This doesn’t just happen in discussions about autism – I’ve seen people with all kinds of disabilities be accused of being “not disabled enough for your opinion to count” when they start talking about their rights.

So today I was in Starbucks spitting coffee on myself and coughing, and people were asking me if I was okay and I wanted to say “I’m fine, this happens all the time,” but I couldn’t really breathe enough to talk. And what I was thinking about, as I recovered from my accidental attempt to breathe frappucino, was how angry it makes me that so many non-disabled people consider disability a moveable goalpost.

Because here’s the thing: the same person who will argue that disabled people locked up in institutions need to be there because they might walk in front of a car or choke on food or water, will then turn to me and say that even though I have these experiences fairly regularly, I'm not Really Disabled, and they can tell because I don’t live in an institution.

Can you spot the catch-22?

Don't Support Autism Speaks

With April drawing ever nearer, the likelihood that you will be asked to donate money to Autism Speaks approaches one. I encourage you not to give them your money, and this is why:

1) Very little money donated to Autism Speaks goes toward helping autistic people and families: According to their 2010 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services:

While 44% of Autism Speaks’ budget goes toward research, only a small percentage of these funds go towards research into improving the quality of life of autistic people. Most of the research which Autism Speaks funds is devoted to issues of causation and “prevention,” including the prospect of prenatal testing.


2) Autism Speaks talks about us without us. Not a single autistic person is on Autism Speaks’ Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes.


3) Their fundraising strategies promote fear, stigma, and prejudice against autistic people. Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks’ advertisements and “awareness” campaigns portray autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.


4) Autism Speaks is not financially responsible. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with some annual salaries exceeding $400,000 a year. Additionally, their fundraising expenses exceed their spending on most of their core programs. Given these facts, Charity Navigator rated their financial health as 2 out of 4.

If you would like to donate money to organizations which help autistic people, I recommend:

- The Autistic Self-Advocacy Network (ASAN), which provides support, community, and public policy advocacy, by and for people on the autism spectrum.

- Academic Autism Spectrum Partnership in Research and Education (AASPIRE), which
brings together the academic community and the autistic community to develop and perform research projects relevant to the needs of people on the autistic spectrum.

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.

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.

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.