Wednesday, August 24, 2011

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.

Tuesday, August 16, 2011

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.

Saturday, August 6, 2011

Utopian Daydream

I can’t stop having this idea.

I keep this idea close to my chest and don’t show it to many people because I haven’t indulged in this degree of idealism in probably years.

My mom used to work as an occupational therapist. When I ask her about it, she tells me, “Everyone can do something.” My dad used to be a Marxist; he is fond of quoting “From each according to their abilities, to each according to their needs.” Disabled people have a lot of needs. We also have a lot of abilities. So here’s my idea: disabled people living together as each other’s support staff. Get a group together, and see if everyone giving what they can means everyone gets what they need.

It might work something like this: maybe you would wake me up in the morning and make sure I got showered and dressed and then I would cook us breakfast or help someone else take a bath. If I can’t drive, maybe someone gives me a ride to work and if someone else can’t talk, I could make their phone calls and if you can’t lift your arms, maybe they could do your dishes. I proofread your emails. You help me with my taxes. We lend and borrow spoons. We fill in the gaps.

Would we still feel "broken" if the pieces all fit together?