14 responses to “Whose Voices?”

  1. codeman38

    “In Miller’s piece, she says ‘Such is life with Tourette’s Syndrome.’ Not ’such is life with my husband, who has Tourette’s Syndrome,’ or even just ’such is life with my husband.’ And she uses her personal experiences with her husband as a springboard to position herself as an authority on Tourette’s, just as many other nondisabled ‘advocates’ use their family members as tools to suggest that they know what it’s like and thus should be provided with platforms to speak from.”

    This was one of the things in Shark-Fu’s post “On Autism Awareness Month”, as linked in the April 5 Recommended Reading, that bugged some of us here. The interesting thing is, I actually liked the post quite a bit as a whole; it was far more accepting than most of what I see out there regarding autism, a nice antidote to the doom, gloom, and eliminationist rhetoric that’s normally thrown around in the name of autism awareness. But I’ve got to agree with the critics that Shark-Fu has not “lived [her] entire life with autism,” but merely lived it with an autistic person.

  2. Anna

    This is something that always made me very uncomfortable when so much of my writing was focusing on Don’s disability rather than my own situation. I felt that people “liked” reading my posts because it was “safer” – I was both “translating” the experience in a way they could relate to, and was conveniently not “actually” disabled. (How many more scare-quotes can I use in one comment?)

    I mean, I know why I was writing that way – I know Don does not want to write about disability, and is glad that I do – but that doesn’t mean I wasn’t playing into exactly the same tropes that you’re talking about here. My motivation isn’t as important as the direct result, which was Yet Another (apparently) Abled Person Talking About Disability.

    It’s still something I spend a lot of time thinking about.

  3. codeman38

    And incidentally, I see that Shark-Fu has since realized the issue with that phrasing and apologized for it. This makes me very happy.

    Now, if only these mainstream media columnists could follow suit…

  4. Anna

    *nodnod* Codeman, I see that now, although I didn’t when I linked it. There are certainly reasons for highlighting the voices of people who live with people with disabilities, but it comes right back to what s.e. is writing about here – who gets to speak. Who gets the attention. And what that attention means. As I’ve written elsewhere on FWD, the needs of people with disabilities, and the needs of family members of people with disabilities, are not the same things at all, and it bothers me that so much more attention is paid to caregiver burnout (I’ve done it, I know, although I’d like to think I’m wiser about my own bias & privilege now, thanks to FWD commenters being willing to remind me of it) than is to helping actual people with disabilities.

  5. KJ

    I couldn’t read the article by Sue Blackmore. I read the first few sentence, when WTF and stopped. I’ve had an eating disorder and I was still there the entire freaking time- I wasn’t lost. I wasn’t hiding. In fact, in a way, my eating disorder was me being honest about my pain. For the first time, I wasn’t hiding the fact that I was miserable- and I was immediately punished for it by ‘treatments’ that told me to hide again. When I refused to ‘get better’ (which for most of the treatment centers/therapists I dealt with meant ‘shut up and eat’), I was punished even more. Most treatments refused to look deeper than ‘girl wants to be thin.’ And it went a lot deeper than that.

    I hate the narrative that says a person with a mental illness is somehow ‘not them self’ or has ‘gone away.’ It is ridiculous- my disabilities are part of who I am. When I am anxious or depressed, I am still me.

  6. Li

    This. So much.

    I was watching a story on cerebral palsy the other day, and they interviewed the mother of a man with cerebral palsy, who was also his carer. And the representation of him was pretty much her wiping drool from his mouth and him throwing a ball and doing motor exercises with a toy castle (which was not, unsurprisingly, at all explained by the story, which was pretty much just LOLOL CHILDREN’S TOYS). And basically, the story boiled down to it being really important to cure cerebral palsy, cos life is really hard for carers.

    But what’s interesting about this in relation to your article is that I think it isn’t just that disabled people are viewed as voiceless, but that this voicelessness is frequently presented as evidence that they actually aren’t people at all, so much as empty shells. So you get in this vicious cycle where disabled people are silenced, and then that silence is evidence that they don’t you know, have independent thoughts about disability (and in extreme cases, thoughts at all), and this just justifies the silencing all over again.

  7. codeman38

    @Anna: “As I’ve written elsewhere on FWD, the needs of people with disabilities, and the needs of family members of people with disabilities, are not the same things at all, and it bothers me that so much more attention is paid to caregiver burnout […] than is to helping actual people with disabilities.”

    This is something that greatly bugs me as well. So much of the “autism support” that’s out there is not for the actual people living with autism; it’s for the families, significant others, etc., of autistic people. Meanwhile, there’s plenty of support that I could use as an autistic person– help with social interactions, help dealing with sensory quirks, help with everyday tasks that quickly put me in a state of overload– but the need for this sort of support, of course, goes largely unrecognized.

    I didn’t mean to single out that one particular blog post, incidentally; I was merely using it as a further example of this sort of discourse that I’d seen recently.

  8. K

    Hey does this apply to published theories & studies too? Because I have read published works by, maybe not ~famous people per se, but, doctors (MDs and PHds) or researchers who are recognized as having some expertise in whatever field they study. And that study happens to be disability, or gender, or both.

    I’m not sure what I’m supposed to feel when people with disabilities are the subject of interest & are talked about, but the studies & papers don’t include much of what they actually said. Or If it does, then what was said is used to prove a point.

    Because on the one hand well that’s where we get theories… Some of which have value! But it’s maybe not what the interviewees would have said if given a place to do so.

  9. The Untoward Lady

    I just finished doing a report on ableism in public service announcements where I looked through a number of television spots put out by various organizations as well as other video educational materials available from their websites. I hate to say it, but the centering of the nondisabled narrative, of disabled people being talked about as if they weren’t even there, was almost universal.

    Also, as a woman with Tourette syndrome, I was always under the impression that it was having our own voice that we were always notable for! Of course, when we’re talking about our vocal tics, that’s just words and noise that should be tuned out, not listened to, and ignored. I’m really sure there’s an analogy I’m trying to make here… :3

    Also, all of this makes me really, really want to shout! :3

  10. EGhead

    Maybe this isn’t appropriately productive, but… thank you, thank you, THANK YOU for writing this.

  11. Kowalski

    ‘Interesting, when I just read “living with Tourette’s Syndrome” which I never heard before, it sounded so utterly and completely absurd to me, but when I read “living with autism”, the narrative I’m used to hearing, it annoys me, but it doesn’t sound quite as ridiculous to me. Just goes to show how we internalize this crap, doesn’t it?

    That’s kind of the reason why I’m so pedantic with language, these small and supposedly unimportant phrases turn into a meme that spreads and then we end up thinking these narratives are acceptable.

    “Now, if only these mainstream media columnists could follow suit…”
    Well maybe the meme works the other way round, too, the more people are aware of better narratives the more it will catch on. I hope.’
    .-= Kowalski´s last blog ..Vintage Books: Lady, stay classy! =-.

  12. lilacsigil

    This seems, to me, to be the most insidious version of the “I have a black/gay/trans* friend, so I am qualified to say what is and isn’t racist/homophobic/transphobic!” My control over the non-privileged “person of choice” is societal, cultural and historical; my control of the disabled person may be all those things plus economic and physical.

  13. Rosemary

    @KJ: “I hate the narrative that says a person with a mental illness is somehow ‘not them self’ or has ‘gone away.’ It is ridiculous- my disabilities are part of who I am. When I am anxious or depressed, I am still me.”

    AMEN! I wish people would understand that. I don’t, like, become depressed with the full moon like a werewolf or something and become some beastly Other Me for awhile. It’s all Me, whether the meds are controlling the depression or not, whether I’m in a OCD flare or not, whether the PTSD is triggered currently or not, etc. It’s still ME no matter what.

    @Anna – I know you are not looking for cookies or anything, but I do think you walk a good balance when your writing does focus on Don’s disability and your shared experiences of life together with it. And there is absolutely space and a need for discussions and essays and such from that POV, too. It’s not like the way you talk about Don’s disability is silencing towards other people with disabilities. I’ve never read something you wrote and felt like you were trying to be an expert on other PWD’s lives or experiences, you know? It’s good, though, that you spend time thinking about how to write about such things. It’s probably *why* you do as well as you do with the subject.

    As far as the topic of the post – I was linked to several posts about last year’s Autism Speaks UN campaign and all of the fail involved. I was getting very worked up about it and a friend of mine got kind of edgy with me about it, not understanding what the big deal was. When we both calmed a lot and were able to discuss is calmly, it helped her to understand better when I talked about this kind of framing – that Autism Speaks was not using any of the words from actual autistic people and that even the messages coming from loved ones were about how having an autistic child/sibling/etc. affected *them* – and only in negative ways. I compared it to a parent saying to a queer child “well, I love you but I hate the fact that you are gay” and how that child would grow up learning that their parents hated a huge part of THEM, that they were, in fact, hate-worthy. And that was what worked for her.

    I think it *is* important to hear about what it is like to have a loved one with disabilities. But the message has to be delivered carefully. It can be difficult for parents and spouses to accept, and for that reason, the discussions about these things should focus on the positives and on how people have learned to accept and embrace their loved ones disabilities, etc. It is hard for loved ones of PWDs, too, and there should be space for them to talk about that.

    But not to the exclusion of PWDs having our own voice. And not in ways that are harmful to PWDs needs and rights being met. Maybe if every newspaper or major blog or magazine that wanted to print an article by a currently abled person who has a loved one with disablities could publish two articles by people with disabilities themselves, it would be better? I don’t know.