On Centring Caregivers in Disability Discourse

It’s really off-putting when a group of disabled people are trying to have a conversation and a caregiver butts in with “you’re wrong. I know, because I care for someone with such and such a disability”. This makes me squirm. Even worse are those disability organisations or charities that have only parents and caregivers on their boards. “Oh, but it’s all right, my brother has this condition. In fact, we all have family members with this condition!”

It’s troubling enough that there are so many such organisations out there that just don’t have anyone who actually has the disability concerned on their boards – it’s as though we can’t speak for ourselves or have unique experiences people who don’t have our disabilities can’t relate to or advocate about! – but that’s not directly what I want to talk about today. I want to talk about who gets to run conversations about disability and who gets to run the narratives. All too frequently, abled caregivers and family members are centered in conversations that really ought to be run by and focus on disabled people.

The thing is, abled caregivers and family members, while pretty involved in the lives of those they are caring for, have their own perspectives, which is great. But treating those perspectives like substitutes for those of disabled people themselves makes me really uneasy. So when the perspectives of disabled people get pushed out because carers are brought to the forefront – in legislating, in daily conversation, in interviews – for me, that’s a clear example of ableism run rampant. Because it seems like those in charge think that disabled people aren’t worth listening to or are incapable of informing their own opinions. The dominant narrative is that abled people are better worth listening to, and I get sad when abled carers and parents just don’t seem to realise that they’re dominating conversations at the expense of disabled people. (It reminds me of those times when men start talking loudly about feminism and everyone else in the room has to keep quiet, is denied a chance to speak.) And “advocacy” of disabled people shouldn’t be at the expense of disabled people.

Of course, it’s usually particular kinds of caregivers who get centred – who centre themselves – in these conversations: abled ones. As ever, it is those with multiple roles who are pushed to the margins, because their existence is held to be just too complicated to deal with. I think acknowledging disabled people who are also caregivers would be a really good start to decentralising the place of abled caregivers in these conversations. Moreover, acknowledging the multifaceted nature of experience brings out the nuance: we really have to engage with the dynamics of different people’s situations here – what are the power dynamics like when you’re both in a position of power and disabled? how do these conversations apply to you? – rather than defaulting to listening to abled parents and caregivers.

Now, I’m not saying that abled caregivers and such should have no place in conversations about disability and ableism, you understand: I’m saying that such folk have dominated conversations about these matters. There is a place, it just shouldn’t be a place that replicates the hierarchies present in society already: hierarchies around who gets to speak, who gets to do the representing. The effect of this – and you can look at a range of newspaper articles or documentaries or whatever you please – is that disabled people get silenced. The effect is that, more often than not, it becomes all about portraying the caregiver as angelic and the person cared for as a burden they have kindly taken on.

And that’s not on.

[Cross-posted at Zero at the Bone and FWD/Forward]

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44 comments for “On Centring Caregivers in Disability Discourse

  1. shah8
    August 11, 2010 at 7:30 pm

    Yeppers, this is actually a major problem. Self-righteousness + anon is even more lethal than anon by itself, which is why I cringe at call-outs much of the time. More than that, because self-righteousness is mixed in, call-outs tends to be about reinforcing the dominant social discourse and positioning of the call-outers rather than helping anyone understand anything. So the call outs happens in certain social directions and not in others, often because the other directions will provoke a mass response of “that’s not important/why are you hurting our feelings?”

    Thus (for my pet peeve), as well as making it socially understood that “retard” (among other derogatory terms) isn’t acceptable language, making a loud to-do about it should be considered in the same way speaking in all caps would. Instead, wit and insight should be utilized in a thoughtful post that gives the offender a chance to learn with the least bit of face. It would help if people understood that *all* derogatory terms have the same issues, and not try to submarine their attitudes and ruin other perfectly good words.

  2. August 11, 2010 at 7:41 pm

    If you could keep remotely on topic, please.

  3. shah8
    August 11, 2010 at 7:48 pm

    I think I should clarify and tie into the original post.

    People can be incredibly paternalist when they know a little about some Other way of life (or a lot about a small slice of people). Other people tend to be a rather insensitive cheerleader about disability issues–think of the way some people think that women could compete with men in Basketball. It’s…not outside of the realm of possibility, but that’s a terrible and tangental approach to thinking about gender equality in sports. Both groups avoid thinking about what *that particular disabled person* can specifically do (or think that their experience with the disable person they know or care for can be translated to the disabled populace at large). Complexity tolerance is a class-mediated resource, and people tend to be very touchy about understanding that they have to put in the work at thinking and speaking with nuance. This doesn’t mean that we shouldn’t expect the same from everyone, especially in a zone of such cheap discourse!

  4. August 11, 2010 at 7:53 pm

    yikes, so much for having a comments thread centered on people with disabilities on a post attempting to center people with disabilities. it’s clearly much more important to use this space to discuss … well i’m not really sure.

    thanks for this post, Chally.

  5. August 11, 2010 at 8:04 pm

    shah8, please think about taking a step back for a minute so we can talk about the topic, yeah? This post wasn’t an invitation to talk about not-quite-related things, but an invitation to discuss the centring of abled carers and parents in discussions and activism around disability.

  6. shah8
    August 11, 2010 at 8:13 pm

    This is a very meta post (besides something I agree with), and I think that writing a reply that is coherent and concise that sez something new is not actually easy. Of course, I have never been good at not writing the tangential thoughts.

  7. August 11, 2010 at 8:27 pm

    I have epilepsy, and have only needed a caregiver when I actually have a seizure. I’ve noticed that the people who have acted in that capacity (sister, dad) tend to exaggerate their knowledge about epilepsy after they tended to me a few times. All of a sudden, I was being scolded (so paternally) for “allowing” a seizure. All of a sudden, the two of them have all this insight about “what it’s like” to have a seizure disorder. Though I know they mean well, I know that they are actually seen as more of an “expert” than I am because of their “objectivity.” See, I have epilepsy, so I can’t possibly know much about it. But they have experienced the “horror” (yeah, that was the word they used) and thus are now experts.

    It seems to me that a caregiver might be perceived as being more objective than an actual disabled person, which is why disabled people’s voices are often silenced while caregiver’s are listened to with both respect and sympathy.

  8. August 11, 2010 at 8:30 pm

    There’s also the issue of abled people (especially caregivers and relatives) thinking they know what’s BEST for PWDs all of the time, and this is problematic, because that is often not the case. For example, as a PWD, I currently might (and most likely do!) make medical and medication-related decisions that my blood relatives do not agree with, and this is additionally complicated by the fact that some of my relatives used to make my medical decisions for me when I was a kid (and to some extent and in certain situations, not capable of making these decisions on my own). The constant refrain of “but how does your FAMILY feel about the fact that you have chosen to pursue x treatment/have y medical condition/take z medications” infuriates me; it implies that my disabilities (physical and otherwise) matter *only* in relation to the abled people in my life.

    This has an interesting gender component, too — a number women are socialized to believe that certain behaviors (often their own behavior[s]) or needs matter *only* in relation to how they affect other people.

  9. odanu
    August 11, 2010 at 8:34 pm

    As a professional caregiver (currently a supervisor of case managers for people with severe and persistent mental illness at a public hospital) I can attest to the ambivalence in the field around putting people with disabilities at the center. Some of us are completely on board, but still find it hard in practice in our day to day lives because of the structure of the institutions within which we work.

    It has been my experience that some of the best insights with regard to positive change in systems of care, legal systems, and other systems come from people with disabilities, but the power is often structured so that *at best* people with disabilities have only an advisory role. This is even more common, in my experience, when the disability in question is a mental illness or a developmental disability.

    I would appreciate feedback on how to get large systems like the one within which I work to be more responsive in this way. I do what I can, but I am a low level manager with no real tenure.

  10. Kristen J.
    August 11, 2010 at 8:40 pm

    Thanks for this Chally. Very thought provoking.

  11. RMJ
    August 11, 2010 at 8:53 pm

    This is an awesome, instructive post. I’ve seen this a lot, especially in discussion of abuse of PWD – “but what about their circumstances!” I’ll be quoting and linking this wonderfully concise post in answering them in the future.

  12. August 11, 2010 at 9:10 pm

    Thank you so much for this. The point that carers might also be PWD is particularly important. I’m my partner’s primary caregiver, essentially, and he’s mine. The usual TAB-centric talk about care-giving does not speak to us at all.

    In many contexts, this kind of discourse also serves to marginalize the needs of adults with disabilities. With autism and many other disabilities, the caregiver-centric discourse often means that adults with these disabilities are rendered invisible. And, of course, the children who are being “advocated for” often get marginalized and exploited themselves in the process. But oftentimes you can’t even bring that up without being accused of “hating parents of special needs children” or other such nonsense. I hate, hate, hate the trope that being a caregiver for a PWD endows sainthood and freedom from any criticism whatsoever. This shit contributes to abuse.

  13. Jadey
    August 11, 2010 at 9:11 pm

    And the hostility that some people bring to the table when it is suggested that caregivers be decentred by PWD in discussions about PWD… it’s terrifying. Resentment and rage. It reminds me of attitudes I have seen in discussions surrounding adoption and the way the perspectives of adoptive parents are used as substitutes for those of adoptees, especially adult adoptees, and the resistance there as well to listen to, include, or acknowledge the perspectives of adult adoptees. Not to derail – I think the similarity has partly to do with the theme of infantalizing. PWD are seen as childlike or perpetually helpless, like the stereotype of child, and adoptees are often thought of in the context of being children, rather than adults (I even had to edit myself earlier from saying “adult adopted children” – yeesh!). This way of thinking seems to be part of justifying the mindset that Annaham described – the “know what’s best” attitude.

  14. Shaun
    August 11, 2010 at 10:25 pm

    I’m an autistic adult. I don’t know a lot about the impact of ableism on people with other disabilities, but this really reminded me of just about every autism/Asperger’s discourse I’ve ever been in. In addition to what you’ve mentioned, there are usually a few silencing tropes used when a disabled person actually dares to speak about his experiences–“Oh, you must be ~high-functioning,~ so therefore this conversation doesn’t apply to you. You really have ~no idea~ what it’s like to have “severe” autism.”

    Most of the time these people don’t know what high-functioning even means–the dominant narrative has taught them that these individuals are helpless, can’t hold a job, can’t communicate, need to be monitored by a nurse 24/7–and instead of using it as an opportunity to learn, these tactics teach them to devalue the individual as an “exception.” Nevermind how incredibly dangerous it is to discount or exceptionalize those disabled people who can communicate so you can do whatever you want to the one who can’t (or is a minor), sometimes with lethal consequences.

    On top of that, like you’ve mentioned–I don’t think I’ve ever even seen a newspaper article or news piece that actually focused on or even talked to an autistic person–the focus is usually on A Mother of A Child With Autism, who’ll spout the most damaging things and no one can touch her because she’s Sacrificed Her Whole Life to care for a disabled child.

  15. Dymphna
    August 11, 2010 at 10:25 pm

    I notice that I do this to myself. In discussions about disability, I often put my experience as a caregiver in the mental health field in the foreground and breeze over the fact that I have a chronic pain condition and periodic clinical depression.

  16. August 12, 2010 at 12:08 am

    This is such a needed post. One of the reasons I stuck with my gp, out of all the gos I’ve been to, is that she understand my mental health issues are my mental health issues. She offers advice, but let’s me make the call. Also, she has dealt with the same type of issues (depression/anxiety) and so is coming from a place of understanding.

    So much nicer than those people (gps, councillors, psychs) who said I was “faking” or “attention seeking” and assured me they knew “all about depression” despite never experiencing it.

  17. melaka
    August 12, 2010 at 12:31 am

    Deaf people have been struggling with this for a very long time now. It is usually assumed that caregivers (or as we call them, “gatekeepers”) are the authority when it comes to matters of communication and language use. It is infuriating for me to see over and over again, the wishes of deaf people being overlooked in order to give attention to an authority figure/gatekeeper. I cannot count on my hands how many times I’ve heard “You’re deaf, you don’t really understand what’s going on”, or some other version of this argument. Even when it comes to conveying basic cultural information, people often reach to those who can hear, who are gatekeepers, rather than to deaf people themselves. I will never forget one night while I sat around a campfire and watched three interested persons query the other hearing person there about Deaf Culture, American Sign Language and related matters. I was *right* there, yet they still sought information from the hearing person! I watched that hearing person burble happily on and on forth about those topics – it was truly amazing, and not in a good way.

  18. lilacsigil
    August 12, 2010 at 1:04 am

    a number women are socialized to believe that certain behaviors (often their own behavior[s]) or needs matter *only* in relation to how they affect other people.

    Which is why I wonder if promoting one’s role as a caregiver to a disabled person is considered an acceptable way that a caregiver (a majority female group) *can* receive social approval and status for work that is often made invisible (and, in many societies, is low-status work). Then, like many people when asked to check their privilege, caregivers deny that they have privilege because casting the “saintly caregiver” role as privileged is very challenging, despite the very real power that they do have over the disabled person/s in their care.

  19. murphy
    August 12, 2010 at 1:27 am

    I would be interested to see how people deal with the intersection of the low wage labor of caregiving and the topic discussed in the post. Many professional caregivers – predominately women, natch – hover around minimum wage with no benefits and basically no platform on which to drive any conversation whatsoever. In many states, when you’re discussing state funds paid out for caregiving, the person with disabilities is actually the employer of the caregiver, with the ability to hire and fire and discipline. This changes the power dynamic significantly. My apologies if this post wants to focus exclusively on non-professional caregivers – e.g. friends and relatives – but I think it’s important to broaden our vision of caregiving to include the lives of professional caregivers who struggle through poverty level wages to give care to those who need it.

  20. Haley
    August 12, 2010 at 1:28 am

    Like many children, my mom was (and still is in a lot of ways!) my primary caregiver. She was also my disability advocate, the one who calls the doctors and spends half her time fighting with insurance companies, and most relevantly for this discussion the one who fought to have my 504 written and the one who still helps me fight to keep it honored.

    She is pretty widely hated by the people she’s forced to honor my 504, especially teachers and 504/IEP coordinators. (it seems like their job was mostly to keep the number of kids with accommodations down.) These people wanted me to fight for myself- and that’s a wonderful thing, but in reality for a long time I was too young to advocate for myself and I get panic attacks when negotiations go wrong. My point is that sometimes people who demand that I speak for myself without hiding behind a caregiver are really just looking to take advantage of me.

    Just wanted to share that perspective. I completely see your point and think its also important. Oftentimes these people who try to “negotiate” the accommodations of my 504 down to something that’s “fair to the other kids who don’t get extra time on projects” are the ones who insist they understand my problems. (Or, my personal favorite, declare that I have nothing wrong with me because I look normal and don’t scream swear words/wash my hands all the time/act hyperactive)

  21. karak
    August 12, 2010 at 1:31 am

    I’m a professional caregiver. I work with people with developmental disabilities who need constant attention and care. They are unable to speak for themselves, and I often struggle with wondering who should speak for them, how to balance their desires with the reality of their health, the limits the State puts on me, and my personal abilities.

    I think caregivers are definitely given a bigger chunk of media airtime. And not even real caregivers, but the pretend caregiver. There’s this weird emphasis on, “What if YOUR child had autism/mental illness/developmental disability/physical disability?” as opposed to “what if YOU had autism, etc, etc.”

    It’s all about encouraging the idea that disability only happens to Other People.

  22. Kaz
    August 12, 2010 at 2:17 am

    Want to totally second what Shaun said, as another autistic person. The dialogue around autism is focussed on parents and caretakers to the extent that it really makes me feel ill. What I also find really problematic is that, as a result, neurodiversity does not much get talked about and there is incredible focus on making autistic kids pass as NT as much as possible instead of making them more functional – I know from personal experience that the former can work against the latter, so seeing so many people focussed on things like their kids not making eye contact or wanting to get rid of harmless stimming behaviours makes me want to cry. I question the notion that parents always want the best thing for their children. Even aside from cases like abuse and murder it’s quite possible that they think they want the best thing but it’s not actually true.

    And you have things like the antivaxers who think that putting their children through chelation or onto chemical castration drugs will “cure” them of autism, and everyone tells me that we have to feel for them because it’s so horrible to have an autistic kid! And you know what, I am SICK of it because for fuck’s sake, when do we start feeling for the autistic kid that’s being put through horrible dangerous unnecessary experiences to make them NT? When do we feel sorry for the kids who have DIED due to these unnecessary “treatments” instead of their parents?

    And then, just like Shaun said, if you dare to pop up and say anything along these lines you’ll be dismissed as one of those Asperger’s high-functioning people so you know NOTHING, absolutely NOTHING, of what their life is like! Often while they’re talking about how it is horribly dreadful how their kid can’t do something I can’t do or have huge trouble with. (Oh I want functioning-level terminology to go die in a fire, because it makes things out to be simple and clean-cut and clearly divided that really are not.)

    On a personal note, I should say that I’m relatively recently diagnosed and have spent a lot of time trying and failing to explain to my family what autism means for me. A few months ago, I was driven almost to frustration trying to make them see that acting as if calling me autistic was slander was not okay because hey, I WAS autistic, was HAPPY to be autistic, it wasn’t an insult, and they simply could not get this through their heads. There was a lot of “oh, but you have AS, you’re not like those AUTISTIC people”. Long story short: I really, really don’t think their being parents of an autistic child should give any of them the right to act as experts on the experience of autism.

  23. Meredith
    August 12, 2010 at 2:45 am

    Kaz: A few months ago, I was driven almost to frustration trying to make them see that acting as if calling me autistic was slander was not okay because hey, I WAS autistic, was HAPPY to be autistic, it wasn’t an insult, and they simply could not get this through their heads. There was a lot of “oh, but you have AS, you’re not like those AUTISTIC people”.  

    When I was diagnosed with bipolar disorder, my parents were the same way. I am bipolar. You can say it. I finally had a name for everything “weird” I had been doing and feeling, and they tiptoed around it. (I struggle with “I am bipolar” vs. “I have bipolar disorder” because it’s an integral part of my personality, but I don’t want to be reduced to it, but that’s a whole other blog post.) If they had it their way, I would be medicated and closeted. I think it’s extremely important that my voice is out there because so many other people with mental illness are ignored. I have privilege in several different forms which allows me to speak up and actually be listened to.

    However, I do tend to find myself referring to “my friends with mental illnesses” in conversations about the topic. I think on some level I’m afraid that even though I have the privileges of education, race, and class, I will be immediately dismissed once it becomes apparent that I’m not just a supportive friend and sometimes-caretaker, I’m also “one of them.”

  24. Haley
    August 12, 2010 at 3:16 am

    I think the distancing of oneself when talking about disability (ie, “what if your child had a disability?!”) has to do with a dehumanization of people with disabilities- it wouldn’t make sense to talk about what the reader would do if they had a disability because disability means the person wouldn’t exist enough to be worth talking directly to. A developmental, mental, or psychological disability is especially dehumanizing and thus more likely to be framed as a condition for a loved one instead of the reader because to ablists (which I try not to be- I apologize if I’m unpacking this baggage too loudly and publicly) trying to imagine what it would be like to have a disability is like asking “what if you weren’t human?”

  25. Mandolin
    August 12, 2010 at 5:01 am

    This is a really great post, Wheelchair Dancer. I’m really enjoying your blogging here.

    I’m trying to think about this post in the context of this interview (full series in sixteen parts) with Sue Swenson, a woman who is a professional political advocate for disability rights, whose son has a number of developmental disabilities and cannot speak.

    I came to the interview through the blog of a disabled woman who is a caretaker for her own disabled son. The sections of the interview she highlighted are those related to parenting, though.

    Swenson discusses her dislike of spaces reserved for PWD twice, IIRC. Both times she’s talking about political meetings discussing policy. I don’t know whether she objects to the idea of PWD-only space altogether, or just PWD-only space in contexts of political importance. Either way, it was uncomfortable.

    It was also uncomfortable to hear her say (paraphrased) that she had as much to say about disability as PWD, that she lived with disability as much as PWD do, that she didn’t have lesser experience with it just because she didn’t “live behind the eyeballs.”

    I mean, the interview and her advocacy seemed brilliant in many ways, but these things made me uncomfortable, at least. She makes a good case for the necessity of bringing parents productively into activism, I think, but her arguments shade into problematic.

    On the other hand, when she talks about her son not being able to participate directly in activism himself because he doesn’t speak–that seems important. There must be some way for parents to advocate appropriately alongside PWD–and advocate appropriately for/with children who can’t advocate on their own–without centering themselves and without using non-verbal children to silence or invalidate the feedback from PWD. At least I hope so.

    I’m not trying to argue against the OP, if it comes across that way at all. Just processing.

  26. August 12, 2010 at 5:03 am

    I’m not sure which disabilities this post is about, but I’ve noticed in the British ME scene that the two worst charities are associated with “celebrity caregivers”, and both are notorious for promoting treatments which might help people with one fatigue disorder or other but are known to be harmful to people with genuine ME. The medical advisor of one of these is seeking ethical approval to conduct a trial of something called the Lightning Process, an expensive 3-day talk therapy regime which hasn’t been tested on adults with ME, on children with ME (or supposedly with ME), when it is based on a pseudo-scientific explanation of how ME works and has been linked to relapses in people with ME who have tried it.

    These groups let their “members” think they’re running the organisation by letting them do some administrative and publicity work (including ghost-writing speeches for one of the celebrity carers) but they don’t actually pull the strings. The two charities which really do great work are actually run by real patients, but they deal with specific sections of the ME community (young people and the very severely affected). Among the other decent groups is one run by caregivers who aren’t in the limelight and another is dominated by two doctors who have ME.

  27. August 12, 2010 at 5:17 am

    Just wanted to say that even when we do the hiring (whether through private funds or through funds granted by the state) and can do firing, the power is often with the carer, not the disabled person. There are (or at least can be) also numerous problems trying to fire someone again, find a different caregiver or agency, report problems with a carer, etc.

  28. August 12, 2010 at 6:52 am

    Indigo Jo: it isn’t about any disabilities in particular, just a trend.

    Mandolin: I’m Chally, not Wheelchair Dancer, though I am really enjoying her blogging here, too ;).

    So many thoughtful ideas in this thread! Thank you for commenting, folks, and for the nice things said about the post.

  29. Mandolin
    August 12, 2010 at 7:05 am

    “Mandolin: I’m Chally, not Wheelchair Dancer, though I am really enjoying her blogging here, too ;).”

    Damn. Apologies to you both.

  30. Shaun
    August 12, 2010 at 7:55 am

    Wow. On a discussion topic ABOUT centering caregivers in disability discourse, someone’s ALREADY going BUT WHAT ABOUT THE CAREGIVERS???

    Re: Haley, who my above comment is NOT directed towards, nobody expects abled children to have to advocate for themselves either. That’s part of what being a child means. The problem in these discourses is that no one is willing to let disabled adults speak for themselves, if they so choose. I had an IEP at school. Even after I turned 18, the school officials involved in my IEP told me it “wasn’t about me” and was a “team effort,” and even now that I was an adult my thoughts would be weighed in context with everyone else’s. And then proceeded to completely ignore me, which is part of what precipitated me dropping out and getting my GED, the absolute best use of time management I’ve ever made in my life.

  31. BHuesca
    August 12, 2010 at 8:52 am

    Cosign Haley.

    Also, it was mentioned upthread that PWDs (of which I am one, but that’s not my point) have the power to hire and fire. Well, no, not always, not if it’s say one’s mom, and that’s a pretty privileged statement.

    I really hope there’s a way to give (often unpaid) caregivers the respect they deserve without erasing the PWDs’ points of view…we cannot pit one against another likw this…

  32. August 12, 2010 at 9:24 am

    I think sometimes people think that they are going about their lives wracking up martyr points, which grows pretty tedious after a time. When my grandparents’ health declined, back when I was a young teenager, my father moved the both of them in with the family. My grandmother had the beginnings of Alzheimer’s and my grandfather had an advanced stage of a lung disease.

    I can’t say that I ever felt like that time was a burden to me and I never once heard my parents complain at all the additional tasks they needed to perform. I routinely kept their apartment cleaned and each of us had chores to perform since they couldn’t always do them. If anything, I was very glad to get to know them on a personal basis in ways that were not possible before because they lived so far away from us earlier.

  33. Samantha b.
    August 12, 2010 at 9:25 am

    To wit: today’s NYT piece on mental illness within the Carnegie family, titled “A Legacy of Pain:” http://www.nytimes.com/2010/08/12/fashion/12Monks.html?hpw=&pagewanted=all
    and featuring the following quote, “If I can do something worthwhile to help people with children who are mentally ill I would think that was something worth accomplishing in my life.”

    I don’t think my parents would describe themselves as having a goddamned “legacy of pain” because of my bipolar disorder. I don’t doubt that the times I was in physical danger were distressing for them. If anything, I think it taught them to look beyond the trivial and gave them some perspective on what’s valuable and resonant in life.

    But perhaps more to your point, the voice of those *with* mental illness is entirely erased, and those around them are allowed to define the experience of mental illness. *I* don’t find my mental illness to be part of a “legacy of pain,” and I don’t know why the NYT gets to tell me so confidently that it is.

  34. August 12, 2010 at 10:04 am

    I remember such gems as the point that it must totally be worse for the loving family of a PWD to see that person whom they love suffer, than it is for the person who actually does the suffering. Yeah, that one was a mess, and we run into it all the time, and it needs to be stamped out as soon as it rears its ugly head. Yuck.

    And I wanna echo Shaun. I’m autistic myself, so while the system here isn’t quite the same as in the US and other English-speaking countries represented here, it’s close enough.

    My best and loveliest example is what I’m gonna be doing on Tuesday. See, I’m unemployed. That sucks. I’d kinda like to make some money (with which to buy all those books I have that addiction to hehe – not to mention live on my own).

    I get paid ‘unemployment benefits’ by the state, and they are then obligated to try and find me work – or set me on an educational path that will lead to work. That sounds sensible enough – really.

    BUT – and of course there’s a but(t)

    They wanna do what’s cheap and fast, and I wanna do what I can live with for the rest of my life without my health getting worse. Yeah, that’s sounds reasonable, no?

    I know myself, I know how I handle my disability. I know what things and situations I need to avoid – I have learned from bitter experience – I know what I can and cannot do. I am greatly interested in language – but working with language also means working with the people who speak it, and that’s not a viable full-tme-work option for me. Too bad. Law, however, my other even older interest, would be viable. Law firms hire people like me to specifically scour through the law books and old court files etc etc to find the references and citations the barristers need. That kind of geek-job would be right up my alley.

    But can I be trusted to report on my own abilities or lack thereof? Nope. Not at all. Never. So rather than helping me get through an education – or just the beginning of one – they must first put me through a “work-testing” in a company somewhere. So a person who’s completely unqualified to consider disabilities and the people with them, can judge on my effort 20 hours a week of work completely unlike what I’d be doing after an education and then deem whether I’m fit to work full-time in the field. Because nothing I say could possibly be a realistic view of my abilities or lack thereof.

    Nope. Let’s trust Mr Random McStranger who happens to work in my desired field with that assessment. Or alternatively, let’s have a psychiatrist who knows jack shit about my desired profession pontificate on whether HE thinks I’d be able to handle it.

    The concept of just giving me the same info about the profession that all other college/university/other education hopefuls get and let ME figure out whether *I* will be able to handle it? No. Assuming that I’ve already found this info for myself and there’s a reason my desired field is just that? Nope. That doesn’t happen. Ever.

    Oh. Okay. Everybody else knows best anyway.

    And the really annoying part? Being the way I am, I tend to just adhere to the dictates of anyone I perceive to be an authority figure. A really annoying issue that I’m trying to work around, but it makes it really easy for people who think they know what’s best for me to also trample across me and even get me to agree without any effort at all.


    And people think my parents have it really hard what with finding out about this here diagnosis of mine, and wasn’t it hard when I grew up? That diagnosis that no one noticed until I did myself at age 25, and yet when I tell people what my dx is, I get exactly the same as most others. “But you’re not like THOSE”, and if I’m advocating for respect for people with autism I get accused of speaking on behalf of people I don’t even know – because no one expects someone with any sort of communicative ability to be autistic themselves. ARGH!

    Sorry – that became ranty.

    No one trusts PWD to accurately report what they can and cannot do, nor what their needs are. Outsiders are relied upon to speak the reality of our lives.

  35. Sarah J.
    August 12, 2010 at 11:04 am

    @Meredith: Ditto for me. When I got diagnosed with bipolar disorder as a teenager my parents initially refused to believe the diagnosis (when I had a grand mal seizure a few years later my mom hoped I had epilepsy instead of BPD). My father insisted that I did not have a “mental illness,” that I had “problems that we’re fixing,” as if my severe bouts of depression and hypomania were nothing more than typical teenage angst. In my case, my caretakers couldn’t even bring themselves to admit that I had the illness that initially forced them into that role.

    Now they accept the diagnosis, but with qualifications. I’m told constantly that I am doing remarkably well and I should be so proud of myself because I have accomplished so much–and guess what, Mom and Dad, I didn’t lose IQ points when I got a diagnosis. I’m the same person I’ve always been. There’s no acknowledgement that the way my brain is wired is anything but inherently bad and something that has to be resisted. And I’m down at all, or stressed about anything, or maybe even snap when I’ve been patronized for what feels like the fiftieth time in one day, I hear: “Are you having an episode?” Like it’s easier to turn my brain into a scapegoat than acknowledge that I just might be reacting to something legitimate.

    And none of my feelings about this seem to matter. Because I am not the Parent of a Bipolar Child. I was a bipolar child, and now I’m a bipolar adult, and from my parents’ perspective I never made the jump because of my pesky chemical imbalance. I will always be seen as a problem to be taken care of instead of a fully competent human being. And how I wish that they could see and acknowledge that I am.

  36. August 12, 2010 at 1:05 pm

    Not being able to speak verbally != not being able to directly participate in advocacy, sheesh. Some of the best disability advocates I know can’t speak verbally. Seriously, if this is the kind of view which many “progressives” hold about some disabled people, it’s hard to hold out much hope for the future.

    Why do we privilege verbal speech to the extent that we think that the only “real” advocacy mandates verbal speech? And this is coming from people who are engaged in the blog world, no less.

    Except that the latter perspective is also othering. Because many of the people consuming the media are actually autistic, etc. We don’t need to imagine, and most of us (all PWD, that is) don’t particularly want other people “imagining” what it’s like to have our disability. Because people have all sorts of misconceptions and this kind of “imagining” just promotes pity and more misconceptions. If people want to know what it’s like to have a particular disability, then they should read/listen to people who actually have that disability. (Though this is also potentially problematic, since it has the potential to make the PWD feel like a zoo exhibit. Similarly, many written accounts by PWD fall into what Amanda Baggs calls the “self-narrating zoo exhibit.”)

    The main point is, respect for the full humanity of PWD should not depend on knowing or speculating what it’s like to have a particular disability, and it’s probably better if people stopped trying to engage in these exercises.

    Re: 19: I’m not Chally, obviously, but the problem I see with bringing up this topic in this particular thread is not that it focuses on professional caregivers per se, but because it focuses on caregivers at all. Because somehow discussion about disability issues ALWAYS seems to come back to the caregivers–even in discussions such as this one, where Chally specifically critiqued this tendency in the OP.

  37. August 12, 2010 at 1:06 pm

    Oops, screwed up the formatting. I was responding to #21:

    “I think caregivers are definitely given a bigger chunk of media airtime. And not even real caregivers, but the pretend caregiver. There’s this weird emphasis on, “What if YOUR child had autism/mental illness/developmental disability/physical disability?” as opposed to “what if YOU had autism, etc, etc.””

  38. Shaun
    August 12, 2010 at 1:19 pm

    Let’s hope I didn’t screw the formatting up here:

    Samantha b.: To wit: today’s NYT piece on mental illness within the Carnegie family, titled “A Legacy of Pain:” http://www.nytimes.com/2010/08/12/fashion/12Monks.html?hpw=&pagewanted=alland featuring the following quote, “If I can do something worthwhile to help people with children who are mentally ill I would think that was something worth accomplishing in my life.”

    To help PEOPLE WITH CHILDREN. Not the PWD themselves, just the damn caregivers.

  39. Kaz
    August 12, 2010 at 5:05 pm

    Sarah’s comment is amazing and I second everything in it. Especially the point about nonverbal =/= incapable of self-advocacy, because that comment really made me frown when I read it.

  40. August 12, 2010 at 6:03 pm

    The entire construction of “…speak for (one)self” is a bit squicky, anyhow, largely because it presumes that the only way to “speak for yourself” is to speak verbally, in the dominant language of your area, fluently, in a conventional mode of speech.

    But also because it implicitly conflates self-advocacy with self-awareness — when a PWD cannot self-advocate in an approved manner (see above), that must mean they lack self-awareness as well. The ability to think and reflect is presumed to be tied to the ability to verbally speak. When the latter is absent, the former is almost always presumed absent. (“Deaf and dumb” ring any bells?)

    Again, the people close to PWD are centered rather than PWD themselves — that is, the understanding of the caregivers/close ones is held of higher import than the actual experience of the PWD. The entire conversation reflects around the thoughts and experiences of the caregivers, rather than the caregiven (else the conversation would center around how TABs/CNDs refuse to learn any mode of communication beside their own, and the assumptions showered upon PWD by TABs/CNDs).

    In the end, “speak for (one)self” ends up being about the caregiver’s ability to understand their client/family member. Not about the actual abilities of the PWD. Remember, there are a huge number of disabled people (including, as talked about above, autistic folk) who were considered incapable of independent thought and communication, until some TABs/CNDs were gracious enough to actually put some effort into figuring out a mode of communication THAT WOULD WORK. (Not just the one that suits their needs best, but one that would actually facilitate connection between two people with different body/mind types.)

    There’s a lot to unpack in this thread already, and it’s actually tamer than I was expecting! (so far) :)

    Ty for this post, Chally. <3

  41. Thom
    August 13, 2010 at 5:16 am

    Yes, the rage when we try to get caregivers to allow us our voice can be frightening. I have to agree with that. Non-disabled caregivers are often so secure in their abilities, and so sure of our failings and need, that there seems to be a mix of both fear and resentment when we insist on reaching past them to represent ourselves.

    I also agree that their authority seems to be securely institutionalized in many places. Though, how to topple that authority without fighting with our caregivers is a serious question I can’t answer. Too many people are too dependent on caregivers to get in that fight and win.

    My caregiver has persistent medical issues so she’s “one of us.” She has her own first-hand understanding of limitations and challenges that I don’t think non-disabled people can ever truly internalize. Even though our issues are different, I would trust her ability to represent me, and if she asked me to I think I could try to represent her. This has not been the case in the past, and would not be the case again if I had a caregiver who had no health issues or disability.

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