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.
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Right, so I'm just gonna go with:ReplyDelete
Thanks for your directness. I wil try to be equally direct.ReplyDelete
Yours is an interesting perspective, but how is it one from which I can write? I think you're being a little harsh, considering that the only position I can represent and the only experience upon which I can draw is my own.
And when I talk about the unity that we as a community NEED in order to successfully advocate against a segment of society that doesn't give a damn about our kids or our families, this is exactly the kind of small-picture complaint I'm talking about.
What it comes down to is this. We all advocate from our particular position, and we all feel passionate about those positions. But as long as we squabble about whose position is more valid, WE ALL LOSE.
I'm not sure I understand how I have offended in giving the perspective of a parent rather than a person with a disability (a position I can't represent realistically and would frankly come across as offensive if I tried). What I do know, however, is that insisting that yours is the only perspective that matters and the only one that can reach people? Leads nowhere but scraps. And I think we've all had enough of those.
Parents of special needs kids are NOT coddled. I find that exceedingly offensive. How dare you be so smug.ReplyDelete
I am the mother of a severely disabled daughter who cannot speak. I have been judged and harshly since she was six months old. I can count, on one hand, how many times I've been asked how I am.
The lack of compassion in this society for parents of special needs children is appalling. I am presumed to be abusive. I have to prove, repeatedly, otherwise.
My daughter, on the other hand, is treated as if she were an invalid. She is viewed with pity. That is exceedingly offensive.
I am going to stop before I say something I truly regret.
I can see where Zoe’s coming from and I can see where parents of disabled kids are coming from (I am one). I agree that I can’t give my little one the voice he needs. He can’t talk, and it is ultimately him that has to create his own voice in life; however, as his parent, I am the one to guide him. I KNOW that I don’t feel the same hurt that he does. I KNOW that it will always hurt him more than it does me… but as his parent, I DO have a story to tell, because it hurts me too. Not the same that it’ll ever hurt him, but it hurts.ReplyDelete
I don’t write to disable his voice, but yet to help the community of such a rare condition as a whole. He has Congenital Bilateral Perisylvian Syndrome and when he was diagnosed with this, there was nothing on the Internet for support. I couldn’t find anything because it is that rare. I write on my blog to help other parents that have the same condition that Max has; not to give Max a voice, but to give a voice to this community.
Truly, I hope that when Max grows into an adult he can speak through writing like Zoe is here. I hope that he can tell his own story, because that’s where the true disability stems from – not me. But until then, I’ll at least be available to help the CBPS community learn more about the condition.
"Parents of disabled kids are coddled in this society, spoken of as martyrs and given the benefit of every doubt."ReplyDelete
You offend me to my core with this dishonest comment. Why don't you come sit with me in the ED and IEP meetings that I have ENDURED for the past 6 years and will continue to do so as long as my child takes a breath.
Coddled?? What a JOKE! We fight for our children and that I know more about this child than any so called "ologist" pretends to. I fight egos every single day because they think they know better than a mother does.
And before you start pontificating on what a martyr is ~ look up the definition. And while you are there look up coddling.
This comment has been removed by the author.ReplyDelete
I was moved by Rob's post that you referenced and inspired as a parent not to give up the fight against those who use words that in turn bully my child.
My daughter was born with Emanuel Syndrome. There are only about 200 documented cases in the world already making this journey seem isolated. To top it off, my daughter is unable to speak and quite possibly doesn't even understand much of the hubbub around this one word. I am her voice. I speak for her. I advocate for her because I love her all the way to the depths of my soul. When you love someone, their ache becomes your ache.
For me, I am not worried about what hearing that word will do to her. I fear that the attitude and apathy that is bred through the continued use of slurs and those like it will damage her in other ways. Who will care for her if I'm not around? Will there be enough members of society that will fight for her rights, for her health and for her dignity?
Rob's words gave me courage to speak louder and more often. His charge and the words of others are a courageous battle cry for our society to begin looking at the value of EVERY person in society and that begins with our words.
(I edited so that the post would make sense.)
I think it is also important to note that you are able to self-advocate, and good for you for that. In that respect, you are extremely lucky. For the vast majority of persons with disabilities, particularly those with developmental disabilities, the kind of freedom that YOU enjoy is impossible without the work of us "coddled" parents. If society behaves as if our jobs are hard, it's because they are, although that same society doesn't get how rewarding our lives with our kids really are. Perhaps society also recognizes that no one else is going to step up and take care of our kids if we stumble and fall.ReplyDelete
(And if you really read what I write about my daughter and come away with the idea that being her father is a "truly terrible fate", then I'm going to suggest that you are allowing your own issues to dominate your perspective.)
I think it's great that you are able to speak out for yourself. If only you were even remotely representative. But you're not, not by a long shot. And I'm going to be bold enough to suggest that you almost certainly understand the world of a child with Down syndrome with a LOT less clarity than that child's parents. You're comparing apples and oranges.
Okay, I'm just going to address some of the stuff that people have been saying in one comment as opposed to individually, if that's okay.ReplyDelete
I was obviously unclear when I said "coddled." I didn't mean to imply that parents of kids with disabilities have it easy, because I'm aware that families aren't getting the services they need. And I didn't intend to minimize the effort people are putting in to help their kids. Sorry about that, it was a careless word choice.
What I was trying to say is that most non-disabled people empathize with the parents of a disabled child far more easily than they will empathize with the child, or especially with a disabled adult. Parents of disabled kids seem to get a lot of sympathy, which is why it's frustrating for me that posts like these center the experiences of parents when dealing with things like anti-disability slurs.
Rob, I wasn't suggesting that you write your blog from the perspective of a disabled person -- I agree that that would be silly. But I do find it disturbing that you wrote a detailed post demonstrating why it's wrong to use the R-word in humor, and only talked about the effect on non-disabled parents, who are not the targets of that humor.
Some of the anger in my post was probably too big for this particular incident, because where I'm coming from, I'm responding to a larger pattern -- the pattern of parents' experiences of disability being given more room and made more important than our own.
Also, Rob, I'm not trying to claim that I understand what a person with Down Syndrome feels like when they hear the R-word. What I'm saying is that it's important to hear from people with intellectual and developmental disabilities directly on this issue, not just their parents. And yes, there are people with Down Syndrome and other intellectual disabilities who have written about how the R-word affects them. Here is a statement from Self-Advocates Becoming Empowered, an organization of people with intellectual disabilities, on this issue:
So is anyone else finding it ironic that a post about the importance of centering the voices of self advocates is being taken over by parents screaming they aren't appreciated enough (and twisting the original words of the post because surely, this, too, must be about them?)?ReplyDelete
'cause I sure am.
Here, some useful links:
Also, the "you're so lucky and high-functioning so we don't have to listen to you" isn't actually cute. It gets old real fast. As Zoe pointed out, self-advocates, including people with intellectual and developmental disabilities, including self-advocates who use AAC, have been speaking out for years.
Rob, I've always really liked your blog and loved reading about Schuyler, but I really don't understand the whole thing where parents have to shut down self-advocates by telling us how good we have it and how we're not representative of most disabled people. Can't you just respond to what Zoe is saying, instead of telling her about her "luckiness" and about what she can and can't understand?ReplyDelete
Personally, I'm confused as to why a group of such understanding parents are responding with such vitriol and so many fallacies and personal attacks to one of the very "disabled children" they insist they understand and advocate for so very passionately.ReplyDelete
I find quoting the OP to be quite useful in this case:
"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. "
What I'm saying is that it's important to hear from people with intellectual and developmental disabilities directly on this issue, not just their parents.ReplyDelete
And I agree. But how is it fair to point out that I as a parent am only giving a parent's perspective? And how truly offensive would it be if I were to try to represent anyone else's?
And Amanda, I appreciate what you're saying, but the fact is that I'm correct in pointing out that for those who can't self-advocate, parents are the ones who need to embrace that advocacy and be a voice for our kids. There's nothing derogatory about pointing out the very very real difference between someone who can self-advocate and someone who can't. If it's offensive to you that I would point out this very straight-forward truth, again I'm sorry, but that's what you bring to the discussion, not me.
Zoe, your voice extremely valuable to the discussion. But so is mine, as is any parent's or caregiver's or doctor's. When you try to minimize the voice of any member of the disability community by establishing some sort of hierarchy, you weaken the cause for which we're all fighting.
And while I'm being kind of blunt, at the same time I just want to say that I very much appreciate this conversation.ReplyDelete
The instant someone is presumed incapable of self-advocacy is the instant that the person is unable to self-advocate. I've worked with nonverbal children with IQs below 20 who were still capable of indicating their preferences and advocating for themselves. Support is necessary, of course, but so is a recognition of behavior-as-communication and the actual self-advocacy people with disabilities do every day--which you are ignoring, Rob.ReplyDelete
Let me be very frank. You, Rob, are not a member of the disability community. You know who is? People with disabilities. Your daughter. Zoe. Not you.
It's as if a parent of a LGBTQ+ child were claiming a place in the LGBTQ+ community, and equally as offensive. You can be an ally. But this community isn't yours, and you are doing an excellent job of proving Zoe's point.
Ohhh dear let's pick a few choice goodies shall we?ReplyDelete
"Yours is an interesting perspective." - Rob
Dear Rob. Our perspectives aren't fucking interesting. They're not a mathematical theorem to be solved, they not a puzzle to be pondered. They're our lived experiences, they're our lives. OUR LIVES. It's fucking real.
When you say something like that, you tell us that our perspectives are cute little pocket philosophies, but YOUR perspective is reality. That is what you're saying with those five condescending words.
Reality is this: no matter how much a parent love their disabled child their perspective will never be anything but that of an outsider looking in on disability. That doesn't mean society shouldn't meet parents halfways and help them help their children, but they should be doing this for the children's sake, nothing else.
"For the vast majority of persons with disabilities, particularly those with developmental disabilities, the kind of freedom that YOU enjoy is impossible without the work of us "coddled" parents." -Rob again
This is wrong. The vast majority of people with disabilities ARE able to self-advocate. It's just that most of us are not considered "real" disabled people by non-disabled disability gatekeepers like yourself.
The kind of freedom that we enjoy is mostly because we and disabled people LIKE US have fought tooth and nail to be treated as humans rather than animals, where a lot of people (and a lot of parents included in that) would rather stash even the semi-high-functioning of us away.
"We fight for our children and that I know more about this child than any so called "ologist" pretends to. I fight egos every single day because they think they know better than a mother does." -momologist
My friend didn't get the right treatment till he was well into his twenties, because his 'loving' mom insisted she knew better than the pros. She didn't.
The parents have a better chance of getting to know the person, but that doesn't mean they always know better about the diagnosis. Claiming that is a frightening lack of perspective, because this is what keeps many people with disabilities from getting the treatment and help they need.
"To top it off, my daughter is unable to speak and quite possibly doesn't even understand much of the hubbub around this one word. I am her voice. I speak for her." -Hope
This is exactly what we have a problem with. No, you are not her voice. She has her own voice, the rest of the world simply hasn't found the right frequency to listen on just yet. When you claim to be the voice of another person you are effectively removing any focus from the voice they might have, or that they might develop, you are placing focus on yourself rather than on the person it should be about. Advocating for people who need is good. Presuming to be their voice is so goddamn offensive it makes me want to cry.
Okay, well, this has just become hateful now.ReplyDelete
You couldn't be more wrong, juststimming, and the disservice you do to the entire community, including the parents who are sometimes LITERALLY saving their kids, is just sad. It's an extreme position that, if successful, would keep a lot of people down who deserve better.
Fortunately, the better part of the disability community doesn't feel that way. I'm sad that your anger extends to those of us who are working so hard for our kids and loved ones, kids about whom you know next to NOTHING, despite what you may have convinced yourself.
I wish you all well. I think we've reached that point where we're just going to have to agree to disagree.
A couple things, Rob.ReplyDelete
Twice now, you've said that if I take offense at what you're saying, it's because of "my own issues" and not the content of your statements. With respect, how do you know this? I'm happy to engage in a discussion with you, but I don't appreciate responses which assume that I don't know what I'm talking about.
Also, I have some problems with people using the phrase "disability community" to include non-disabled people. Just as the gay community does not include straight people and the black community does not include white people, the disability community is... well, a community of people with disabilities. I appreciate your work as an advocate for your daughter, but it's not the same thing.
Again, I'm not suggesting that you should write from a perspective other than that of a parent. I'm saying that maybe you should acknowledge that disabled people *have* a perspective, instead of just leaving us out of a discussion that, actually, is about us. You don't need to make up words from a disabled person's perspective -- you can find plenty of links to share with your readers.
Another thing --ReplyDelete
juststimming and I define the disability community as a community of disabled people. You respond that, "Fortunately, the better part of the disability community doesn't feel that way."
... do you mean the community by your definition, our ours? And doesn't this illustrate exactly what the problem is with including allies as members of a community they don't belong to?
Rob, this isn't about pizza toppings. This is not a case where two opinions are equally valid. This is a human rights issue.ReplyDelete
You aren't a member of the disability community anymore than a straight parent is a member of the LGBTQ+ community, so I don't see how you can be honestly reporting as to how the "larger community" feels about this--especially since you are actively ignoring what they do, in fact, say, or even their existence.
I don't claim to know your child. I find it FASCINATING that the instant your right as a parent to say whatever you please is challenged, you effectively accuse self-advocates of wanting children from our own community dead--when all we did was to have the audacity to suggest that they might have voices and a stake here too, perhaps even the primary one. There's a certain lack of logic there.
By your own rhetoric, incidentally, your extreme response to my statement of fact is indicative of your own personal issues and insecurities. Not so nice when it's turned back on you, is it?
Excellent post Zoe. I knew the moment the coddled word choice that you'd get a shit storm out of this because of my own past, but honestly the follow up comment you made should assauge that.ReplyDelete
This is a topic that's hard in the end to come to without all that anger. We are repeatedly told that our parents voices are important, but then are too often ignored to make them heard.
I've spent years working with/around parent advocates, and was raised by one who actually got it. It was a rough process to realize that most parent advocates aren't like my mother, and that their voices- the same ones that would deny people like me reproductive, sexual, and financial self-direction/determination/freedom or who say I can't be seen as a legitimate source on my own life- end up being the ones that are heard, are funded, are lauded.
They hold power over our ability to be heard- even if this is the only power they have in their lives. They wield power in forming a narrative that centers parents. The sometimes silences self advocates directly but more often in-directly through that centering. Some are even denied the opportunity to advocate because the parent has centered their voice, prioritized the parent narrative, delegated the energy there instead of towards supporting the kid or adult with a DD.
None of this is to say that parents are treated well, that they are sufficiently listened to on policy where it does count, or that it's somehow easy to know that the people you went to school with see people like your kid as a punch line. And hey, there are some parents who do it right as far as supporting/facilitating self-advocacy. But the bottom line is that our parents voices are still more powerful in our society than ours are, and centering parent voices doesn't help that, especially not in the case in question.
Jemima saidThis is exactly what we have a problem with. No, you are not her voice. She has her own voice, the rest of the world simply hasn't found the right frequency to listen on just yet. When you claim to be the voice of another person you are effectively removing any focus from the voice they might have, or that they might develop, you are placing focus on yourself rather than on the person it should be about. Advocating for people who need is good. Presuming to be their voice is so goddamn offensive it makes me want to cry.ReplyDelete
If I am not her voice (or at the very least her interpreter) who will speak up for her? If the rest of the world hasn't found her frequency but I have and I help interpret for her, at the very least, I am her interpreter. For a person who LITERALLY cannot form words and has yet to learn a communication device, what makes it so insulting to be her voice? To speak up for her when she literally cannot.
Trust me, there is not one person who I have come in contact in regards to my daughter who would agree that I am putting the focus on myself. Not one of the many people I spent hours with on the phone last month, making sure her g-tube nutrition supplies were continued without interruption believes I was doing it for myself. Frankly, for me, I would have rather been enjoying a good book or having lunch with a friend. I do NOT do any of this for me and to accuse me of that shows just how little you know about parents who are a lifeline and YES a voice for their children.
Ah, but see, when you come to scold self-advocates for self-advocating, as you do in your second paragraph, you're not interpreting for your daughter, now are you. You're re-centering the conversation around your SELF. That's not giving anyone, let alone your daughter, a voice.ReplyDelete
It's great that you're advocating on behalf of your disabled child, but when you call yourself "her voice," you cross the line from advocacy into misappropriation of identity. Your post indicates your recognition that she has a voice of her own, and that you act as her interpreter. This is a perfectly appropriate thing to say. Yet you also went on to conflate being her "interpreter" with being her "voice." While the former conveys that you are translating her thoughts and feelings into a more widely-understood language, the latter insinuates that she has no voice of her own, because you are her voice. This takes away any agency she has and places it on you. I'm not questioning your love or commitment to your daughter. What I am saying is that when you, as an able-bodied person, repeatedly focus the disability rights discourse on your own trials and tribulations, you silence the very people who are oppressed by ableism.
tl/dr: Being an ally does not excuse you from checking your privilege.
Am I the only one finding this whole string of commentary painful to read? We've got two "separate" groups, fighting with each other for... what? Having different perspectives from which to view the same thing as an offense from?ReplyDelete
Why are we drawing lines and creating labels in the first place, saying things like "disabled community" like it's some exclusive club, or debating the thin line between the metaphorical "voice" and literal "interpreter?" We've got people lashing out at the slightest slip of the tongue (or key) like they're TRYING to start a war between self-advocates and supporters. I can't even understand why either side feels the need to separate the two. Self-advocacy is supposed to be about showing that you are capable of expressing yourself and your opinions, that you are another human being and deserve the same rights as every other human. So why are you trying to separate disabled people from non-disabled people? Why define yourself as disabled first and human second?
What's wrong with someone writing, from his own perspective, his own experiences with the offensive humor thrown into movies? So far, all I've seen is people upset that he's failed to represent a perspective that he cannot possibly accurately represent. Did you expect him to have a guest blogger with Down's syndrome or something? Look at what you are doing: you are criticizing parents and friends who are speaking their own opinions with regards to their children and friends. Of course everyone has a voice, but I find it saddening and distressing that the "disabled community" is using their voices to strike out against those who are doing their best to support them.
I agree with soulseeker. Why divide ourselves into 'people with a disability' and 'people without a disability'? We're fighting for the same thing -- acceptance of those with disabilities as people. Just people. Like any of us.ReplyDelete
I have Asperger's syndrome myself, and while I have a normal IQ (122), I am not always able to go this alone. I'm very glad I had parents who phoned up my high school teacher, who didn't know about my disability, when he loudly condemned my 'autistic behaviour' in class (and I ran off crying and refused to return). I was 16, and far from able to have that conversation yet.
I'm glad that my mom made doctor's appointments for me until I was 22, while at the same time teaching me how to do it myself and helping me get over my fear of talking to strangers on the phone.
I'm glad to have parents who see me as a person with a disability, not as a disability with a person attached, and who help me where they can. And I understand why my parents would feel hurt if someone made a disparaging remark about people with autism, because I am quite literally a part of them, just as they are a part of me and I hurt when someone insults them.
Rob can't speak for his daughter, and I've never seen him do that. He can speak from his own perspective, as her father, which is what he is quite rightfully doing. He can speak on her behalf, in her aid. He can be a disability advocate, even if he doesn't have a disability himself. It's only natural to help the ones you love.
I haven't seen him say that a person with Down Syndrome can't write about this film, or that he would object to a disabled person writing their own piece about it. I'm sure he would welcome their perspective as well. It's not either/or, as far as I can see.
Hope, the difference is in the words. Note which part of your comment I took issue with. If she cannot advocate for herself, then it's very good that you can do it for her - BUT that doesn't make you her voice. As you say now, her interpreter - or just her advocate - is a much better term. It's all in the words. Being her voice would mean that she had none at all of her own, and since apparently there is something there for you to interpret for the rest of the world to understand, that means that she HAS a voice. The rest of the world may need you to translate, but think of it this way: if I translate a book from English to my native language, does that mean I wrote the book? Of course not. Does it mean the book is mine? Of course not. It was already there.ReplyDelete
So advocating for those who need it - that's great. Claiming to be their voice (which was what you did at first - now you've amended it) - not so great. I hope that cleared it up.
I so agree with this analysis, Zoe--and I'm a parent. There's a reference in the original post to "people who are brothers and sisters and sons and daughters of the moviegoers who are going to pay money to see this film." So Rob *was* able to expand his perspective to include families not exactly like his, but not far enough to include the disabled adults who are much more directly targeted by such material.ReplyDelete
outsider/non disabled person comment:ReplyDelete
1) it's a movie with a joke in poor taste against a class of people. that happens all the time--it's a joke--it's not the same as implying that that behavior is condoned or tolerated in real life.
2) if you care sooooo much about disabled rights, do something about it by marching on washington or helping other disabled people "find their voice"--dont self indulge your own ego by bitching out some guy (Rob Hummel Hudson whatever)who clearly meant well even if he intends to legislate censorship to safeguard the feelings of the offended.
Rob, your whole post was about the particular life experience a person might bring to that movie and how that would affect her reaction to the joke, with the implication that this is valid. Yet when disabled people don't like the things you say, you tell us that's "just what we bring to the discussion," as if locating our reactions in our personal experience somehow makes them less valid. What gives?ReplyDelete
(I guess to be specific, what I bring to the discussion is a life of having people stigmatize me for my disability when they want to, but try to deny the reality of my disability when it is inconvenient or jarring for them. It's not a competition and I don't think my life sucks more than the lives of people who visibly have trouble with speech, but I also don't feel "lucky" for being denied support and being brushed off with how "articulate" and "high-functioning" I am when a need for support becomes obvious.
I also don't think writing a few comments on a blog really indicates a vast difference in luck between me and other disabled people who can't or don't do so. Is having this conversation really going to change my life?)
You say we don't anything about "our kids" (that is, the kids of parents with disabled kids), but who are these kids? Obviously I don't know YOUR kid. Just as obviously, you don't know Zoe's parents' kid, Julia's parents' kids, my parents' kid, or any of the disabled kids of varying abilities that we have had in our lives (at least I assume so, as you don't live near any of us). All of us live with disability and know a lot of disabled people, but it seems like you're trying to tell us we don't know anything about all disabled kids as a group or something...sorry if it seems like I'm being intentionally dense because I get that a lot but I seriously don't know what you mean when you say we know nothing about this (rhetorical?) group of kids.
Also you're not a woman and you don't have a kid with Down Syndrome, but you were able to write a post from that perspective, so claiming that you couldn't have written the post from a different perspective doesn't really hold up. I wasn't really offended by the post but it does contribute to something I have a problem with, which is the tendency of non-disabled people not to think of disabled people as real people with opinions, viewpoints, and feelings. Some examples of the results of this:
*One time in high school, one of my friends and I mentioned to a librarian we knew that we both had autism. The librarian replied, "Oh, you know someone who has autism?" I've experienced this conversation a LOT of times; I refer to myself as having a disability and the person I'm talking to can't process that they're talking to someone who has a disability, so they process me as someone who KNOWS someone with a disability.
*As a staff person I've sometimes been talking about concerns I have about the feelings of people I am supporting, only to have other staff misunderstand me and assume I am talking about the feelings of staff. This seems not just annoying but potentially dangerous.
*As many disabled people have been writing about for a long time, it is pretty common for the media response to a non-disabled parent murdering a disabled child to be only about the parent's feelings about having a disabled child, and not about the child's feelings about being killed.
Oh and my parents make my doctor's appointments too, but I don't really see how that's related.
It wasn't directly related, it was an example of the ways in which my parents help and support me, and advocate for me. I was attempting to show that creating a big split between people with and without disabilities isn't too helpful, because parents of kids with disabilities are very much a part of their child's life, and the child is a part of theirs. In that sense, they are a part of the 'disability community', not just outsiders looking in but people with their own place in the issues that come with disability.ReplyDelete
I'm reminded of a talk I once gave at Rutgers to a social work class. After bringing up a recent instance of murder of a disabled child by her parents and saying that there were many similar instances, the Professor remarked, "Oh, how terrible that must be for the family members!" I remarked that I'm fairly sure that the children weren't thrilled about it either.ReplyDelete
Despite his good intentions, Rob's blog post gives me a similar feeling. Disabled people shouldn't be viewed as only fit to receive the good intentions of our non-disabled family members. Our voices need to be viewed as at the center of our national conversations about disability and the tendency of many in the parent movement, despite their good intentions, to leave us out of their thinking indicates deeply held prejudices.
As to the question of whether or not parents are part of the disability community, I think that in the broad sense of the term, they are. However, their role has to be recognized as different from that of people with disabilities ourselves - and we need a national conversation about disability which centers the voices of disabled people first and foremost. It is ridiculous to pretend that power and privilege around disabled people don't exist when we live in a world where the media's first reaction upon seeing a story about disability is to talk to parents, where governments treat parents as the main stakeholder even in conversations about services for adults with disabilities and the experience of being a disabled person is one of those "in your own community" trying to make you as invisible as possible unless you conform to their political opinions.
Okay, I'm gonna close comments if I can figure out how, because this has gotten really messy. But thanks to everyone for what has (mostly) been a non-shouty, interesting discussion.ReplyDelete
In writing this post, I was trying to point out that non-disabled parents are given a lot of room in conversations on disability, whereas disabled people, who are primarily affected by these issues, are not given a lot. In fact, parents are given so much room that they can neglect to mention (or perhaps just forget?) that disabled people have perspectives on disability as well.
For people asking why I am creating this non-disabled parent/ disabled self-advocate dichotomy... I really don't know what to say because there are some issues where parents and disabled self-advocates tend to disagree.
I don't hate all parents or something. I know plenty of lovely parents. I have a great relationship with my own parents. What frustrates me is that non-disabled people are being made the focus of conversations on disability. That's all.