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.
Showing posts with label the internet. Show all posts
Showing posts with label the internet. Show all posts
Tuesday, September 27, 2011
Thursday, September 22, 2011
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.
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.
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.
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.
Thursday, February 10, 2011
Recommended Reading (and Donating)
I have a lot of links to talk up and that means it's time for recommended reading!
Asher wrote Critical Condition about a clinic in San Francisco called Lyon Martin. Lyon Martin provides respectful health care on a sliding scale to women and trans people. One of my friends gets hormones from Lyon Martin, and it has really made a difference for them to have access to this level of care. But Lyon Martin may have to close, and they're asking for donations so that they can stay open. If you can afford it, please donate on their website!
Amanda, Julia and I are starting a new disability group blog! It's called LOVE-NOS, and it's filling the hole that FWD left in our lives. If you want to be a contributor or write a guest post, please let one of us know. All the posts that are currently up there are great, and you should definitely check it out.
Amanda and I also started bad brains wearing clothes, which is kind of silly but also awesome. It's basically a brain disability fashion blog.
Finally, please read Insanely Cruel, which is everything I wanted to say after the Giffords shooting even though it was written before the Giffords shooting. It's about the assumption that anyone who would kill a lot of people must be "crazy," and how that comes from people's unwillingness to acknowledge their own capacity for evil, and how it's really ableist. This piece is short, too, and it's really important and you should just go read it.
Asher wrote Critical Condition about a clinic in San Francisco called Lyon Martin. Lyon Martin provides respectful health care on a sliding scale to women and trans people. One of my friends gets hormones from Lyon Martin, and it has really made a difference for them to have access to this level of care. But Lyon Martin may have to close, and they're asking for donations so that they can stay open. If you can afford it, please donate on their website!
Amanda, Julia and I are starting a new disability group blog! It's called LOVE-NOS, and it's filling the hole that FWD left in our lives. If you want to be a contributor or write a guest post, please let one of us know. All the posts that are currently up there are great, and you should definitely check it out.
Amanda and I also started bad brains wearing clothes, which is kind of silly but also awesome. It's basically a brain disability fashion blog.
Finally, please read Insanely Cruel, which is everything I wanted to say after the Giffords shooting even though it was written before the Giffords shooting. It's about the assumption that anyone who would kill a lot of people must be "crazy," and how that comes from people's unwillingness to acknowledge their own capacity for evil, and how it's really ableist. This piece is short, too, and it's really important and you should just go read it.
Friday, December 10, 2010
Recommended Reading: Finals Week Edition
Okay, so it's finals week and I want to write a post but I don't have time to write my own post so instead I'll link to other people's posts. These are all things I've found recently that I think are important and wanted to share. The "recommended reading" post itself is in the style of FWD-Forward, which does a similar link roundup every weekday and which I would most definitely recommend.
First, Amanda recently did a series of posts on the concept of "social skills" that changed the way I think. They are collected here:
Social Skills Don't Exist
Secondly! My friend Asher wrote a Trans 101 that explains sex and gender identity without using transphobic language.
Not Your Mom's Trans 101
I found this brilliant essay by Cal Montgomery a while ago. It deals with a lot of things, but mostly the way that people talk about dependence as it relates to disability.
Critic of the Dawn
Finally, some takes on aspects of Glee that have annoyed the fuck out of me recently:
Dear Ryan Murphy: I have words about Glee
Glee: A Very Glee Christmas
First, Amanda recently did a series of posts on the concept of "social skills" that changed the way I think. They are collected here:
Social Skills Don't Exist
Secondly! My friend Asher wrote a Trans 101 that explains sex and gender identity without using transphobic language.
Not Your Mom's Trans 101
I found this brilliant essay by Cal Montgomery a while ago. It deals with a lot of things, but mostly the way that people talk about dependence as it relates to disability.
Critic of the Dawn
Finally, some takes on aspects of Glee that have annoyed the fuck out of me recently:
Dear Ryan Murphy: I have words about Glee
Glee: A Very Glee Christmas
Tuesday, July 27, 2010
A Noble Experiment
I am starting a blog.
It's going to be a blog about disability. Mostly, it will be about my experiences as a disabled person, but I also plan to talk about disability in society, portrayals of disability in the media, ableism and disability activism, and disability history. It’s going to be a place where I can ramble on about things that fascinate me in the hopes that they fascinate other people.
I can think of lots of reasons not to start a blog. I have a livejournal which I never update, and a long history of starting projects I never finish. The internet is a scary place. Talking about one’s disability online is a mildly risky thing to do. The autism blogging community is bitterly divided, and online feuds seem to be common.
But I’m starting a blog anyway. In large part, I am doing it because Amanda told me to. But also because the internet is so big, there is room for everything I have to say, and maybe I can talk to some people who have things to say too.
It's going to be a blog about disability. Mostly, it will be about my experiences as a disabled person, but I also plan to talk about disability in society, portrayals of disability in the media, ableism and disability activism, and disability history. It’s going to be a place where I can ramble on about things that fascinate me in the hopes that they fascinate other people.
I can think of lots of reasons not to start a blog. I have a livejournal which I never update, and a long history of starting projects I never finish. The internet is a scary place. Talking about one’s disability online is a mildly risky thing to do. The autism blogging community is bitterly divided, and online feuds seem to be common.
But I’m starting a blog anyway. In large part, I am doing it because Amanda told me to. But also because the internet is so big, there is room for everything I have to say, and maybe I can talk to some people who have things to say too.
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