How many of our staff harbor scary viewpoints?

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When I read about various issues surrounding disability on the net, some of the worst viewpoints about us seem to come from people who work in the healthcare system or as personal assistants.

I’ve started to cringe when I hear a sentence starting with “I’ve been in in-home support worker for 20 years, and…” or “I’ve worked with autistic children for 10 years, and…” or anything else like that.  I know that frequently what will follow is some sort of misrepresentation of our lives.  Whether it’s some myth about autism being repeated, or the notion of “…and I’d never, ever want to live like Those People live, not in a million years,” it really makes me wonder.

There’s an LNA cleaning my bathroom as I type this.  She just finished giving me a shower.  I wonder whether she harbors these “better dead than disabled” sort of thoughts or not.  I wonder what she thinks my “quality of life” is.  I know that “quality of life” is consistently underestimated by medical professionals as compared to how disabled people see ourselves.  I wonder how prevalent this toxic mix of pity and revulsion is.  I wonder how many of my staff can’t see me or my friends the way we see ourselves.

The way we see ourselves is of course pretty much as people.  People who operate differently in some important ways, even people inconvenienced in some pretty important ways, and of course people shut out of society in some pretty important ways, but people.  We are not necessarily any more unhappy than anyone else, and when we are, we tend to try to change our circumstances, not mope about how disabled we are.

But I’m not sure that’s how other people see us.  When I read descriptions starting with “I work with Those People…” (including descriptions written by physically disabled people who “work with autistic children” or autistic people who “work with physically disabled people”) they depict our lives as unrelenting suffering and horror, burdening all we come into contact with and returning nothing of significant value.  So… yeah, I wonder how many of our staff think of us as something much different than who we are.  It’s a creepy thought.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

25 responses »

  1. somebody ought to do a study about that.

    [several thoughts later…]

    the tech college I work at has an important (in the surrounding counties) nursing program… I could find out about making a survey, if you and others more expert than me, would write the questions.

    it could be important to the campus’ current goal of increasing crtical thinking. part of this involves becoming aware of our preset ideas and and evaluating new information.

  2. I mean, I think if people were found to have those creepy ideas, and then they met (online or ‘face2face’) people who could change their minds about it… well, that could be good, at least for the future patients.

    If this is dumb or too optimistic, just ignore and don’t pass it through the moderation.

  3. They enjoy socializing to the point of assuming anyone who doesn’t must be miserable…a bit like people who find a party is nothing without drinking and pretending to have a good time and anyone who plays UNO and drinks fruit punch at a party must be missing out on something when in reality, they are the ones getting hangovers and getting in fights and suffering all kinds of stupid horror stories that most people do well without.

  4. Ugh. sorry to add yet one more but….TBH, my life merely lacks excitment and exercise. It has nothing to do with being or not being just like them. Those activities don’t require social skills either and there’s nothing prohibiting people from tolerantly joining me to do those very few simple things.

  5. I’m not sure if this is exclusive to health care workers but also includes those in the education field too. I don’t want to stereotype because there are those who do seem genuinely concerned, but perhaps it is the attitude of some people who go into those fields – like they need to better society or fix people or something. At my son’s old school one worker told me she had worked with autistic kids and proceeded to tell me how they are. I immediately didn’t care for the idea that my son was a “them” and not an individual. And I will admit with my OCD that sometimes I am very cliche (lol) because I am a blatant handwasher, but still an individual.

  6. As for better pay, there are reasons for that, but improving the attitudes of staff won’t happen with that.

    These attitudes are pervasive in society, and the two common “cure alls” (money and education) won’t actually cure them.

    In fact, the money might *hurt* – if you are well paid, it can typically be assumed that you are an expert… Not that I advocate low pay (for other reasons), but just that this won’t solve things.

  7. I just wanted to chime in here if I may. I am a therapist (formally ABA because that’s what the state wants to hear) working in the autism community and I do not share these scary viewpoints. I try as much as possible to understand and empathize with the unique intelligence of autistics. I have learned so much about myself from working with the straight-talking, incredibly honest, and brilliant people who have this diagnosis. That said; I am happy as an NT and I know that I can’t ever fully understand the autistic mind from the inside. I try to share what gives me joy, but I understand that in many cases they will not be what gives a client joy. It would be useless and insensitive to try and make someone else more like myself just because it’s good for me. I have succeeded however in sharing some of the joys I experience from social interactions and independence skills with people who might not have otherwise sought it out. I have helped people who have had difficulties with these things to become more successful at doing many things that they want to do, as opposed to things that society wants them to do. This is the balance, anyway, that I try to achieve.

    I work for what I believe to be an incredible company who operates on the belief that autism is not a devastating disorder or a disease in need of a cure. We want to help autistics do the things that they want to do and we encourage and promote their strengths wherever we can.

    I see a lot of completely warranted and necessary posts on this and other advocacy blogs about terrible practitioners of ABA and other treatments but I wonder if there are any professionals or companies that you or your readers actually support or approve of. I haven’t yet scoured your blog for these things but I would appreciate any hints or links.

    or… what would an ideal company providing therapy or support for young autistics look like? Children, teens, and adults. What ought it’s guiding principles be and on what aspects of living should it focus it’s attention?

    off the cuff comment, but I look forward to replies.

  8. Plus very high pay encourages more people to go into jobs that they don’t like just for the money, so you would conceivably have even more people that didn’t really care about what they were doing and the people they were doing it “to” (or hopefully “for”).

    I have actually heard of people going into (hospital) nursing becos it pays a lot, and then they are mean nurses becos they just went into it for the money; is this just here or everywhere?

  9. I don’t know about nursing in general. I once heard, from a psych nurse who was trying to explain some of the cruelty in the institution she was working in (and I was living in), that some psych nurses go into psych nursing in particular because they view it as “the bucks without the bedpans,” and don’t really care about the job itself.

  10. The most degrading and pessimistic attitudes I’ve seen towards people considered lesser in general have come from people who either worked in institutions or knew someone who worked in them. Also, the people I’ve known who “know someone who worked with…” seemed to have absorbed their attitudes about hopelessness, quality of life, ‘those people,’ etc, to a rather scary degree, often without ever having seen any of it first hand themselves; they simply took everything their “relative who works with etc etc” said, at face value. (They were also willing, almost inevitably, to take offense on behalf of “those people” whenever anything that they interpreted to be “misinformation” was traded around.)

    “My father is a doctor in a psychiatric ward and I can tell you that those people are not like us. They have NO conception of right or wrong. Their mindset is totally different from anything most people could possibly imagine…”

    “I am extremely offended by your statements about MPD not being a disorder. I have met people with MPD. I have worked in a home for the mentally ill, and my mother is a very good psychiatric nurse who talks with patients a lot. I take your statements very personally. You are a fucking idiot. Shut up.”

    “I know people who have worked with those who suffer from Asperger’s Syndrome. You are clearly lying and I take offense on their behalf. People who truly suffer from this disorder have no desire at all to interact with anyone other than themselves and so it’s ridiculous to think they would be posting online.”

  11. I’ve worked in ABA too, and don’t harbor those viewpoints. I don’t think Amanda was trying to say all staff held those viewpoints. If they did, there’d be less wondering about it.
    Regarding ‘n’, I’m planning a study asking assistive com. users and mild-moderate delayed people about discrimination and formulating their responses into a scale, which I will then test on NTs. If you want, I could send (by e-mail or snail mail, if you give me an address) you a copy of the scale once my study is done and you could do your survey using those questions (but don’t claim the scale was designed by you).
    By the way, I don’t think it’s wrong to be optimistic, unless that means you don’t work as hard because you expect it to come with no work. And it’s possible some people’s opinions could be changed that way, though some probably will be harder.
    Would it be possible to interview the “patients” at the nursing home about their relations with staff? If so, you might consider looking for a correlation between the staff’s attitudes and poor relations with patients.
    And an aside – on the CBC awhile ago I heard about a man with multiple sclerosis who begged and pleaded with his mother to kill him, until she relented. He’d been living with MS for 10 years, but much of that it was undiagnosed. It sounds like as soon as it was diagnosed, about 8 months or so before his death, he started talking about wanting to die. And the thing is, he worked in a nursing home, where he probably met people with MS. So I thought maybe his stereotypes of MS might’ve been harder for him to bear than the condition itself.

  12. Also, the people I’ve known who “know someone who worked with…” seemed to have absorbed their attitudes about hopelessness, quality of life, ‘those people,’ etc, to a rather scary degree, often without ever having seen any of it first hand themselves; they simply took everything their “relative who works with etc etc” said, at face value. (They were also willing, almost inevitably, to take offense on behalf of “those people” whenever anything that they interpreted to be “misinformation” was traded around.)

    I wonder if that’s partly because of… well… the effect gone for by the people who say they work there. At least the ones with the scary attitudes.

    I’ve listened to some of the ones, offline, who have tried to go for this effect in front of me. Keep in mind that most of these descriptions were unsolicited by me, and brought about by my mere presence or something.

    It started with mentioning to me that they’d worked in certain places. Then they’d go on to sort of gaspingly describing either what the people in there could not do, or what the people in there looked like, or both. Then they’d unleash all the fear, disgust, horror, pity, hatred, and dehumanization they reacted to people there with (including sometimes desire to kill people, including sometimes accounts of threatening or abusing people, all for being who they were). Then they’d wait expectantly for an expression of sympathy on my behalf.

    Needless to say, I did not give the expected reaction. When my reaction to them was about what you’d expect from any self-respecting disabled person, they’d get super-offended. They didn’t show any remorse. They just wanted sympathy. Which leads me to believe, along with what you said, that maybe when they tell these same stories to their friends and family, they actually get sympathy, and their friends and family actually believe whatever prejudiced version of events they manage to come up with.

    I can still remember a guy giving me a long, detailed description of institutions, pausing to go longer over the details of the sort of people in them, all the while thinking I’d be creeped out by descriptions of people like me. I don’t think he realized the only person I was creeped out by in the whole description was him.

    And that in turn reminds me of the time I came in while we were picking someone up from a day program that took place at an institution (she and I were both clients of the same agency, and that agency often doubled up on rides). I hadn’t realized it was a live-in institution until we got inside, and I was visibly jumpy I guess. The woman we’d come to pick up was crying. This made me even jumpier, because I thought she might get punished for crying. So I was sitting there afraid of the staff, and all the staff rushed to reassure me that there was nothing scary about the woman who was crying.

    Which is a bit of a ramble, but gets back to that thing about the often startling obliviousness of staff to the real reactions disabled people often have to them, as opposed to the idealized reactions they seem to imagine.

    But I do wonder if a lot of the claim to specific knowledge of disabled people is from those super-dramatized stories by staff of working in those places. (I have to say it was really interesting, and disturbing, before people knew I’d written my website, to read people doing those super-dramatized reactions in response to my physical appearance with the usual “I’ve worked with…” “My husband works with…” etc.)

  13. Last month, Tales of the CCU had a nurse describe her particular discomfort dealing with quadraplegics. Not sure if WordPress will let me do a hypertext link so here’s the URL: http://www.codeblog.com/archives/tales_from_the_ccu/quads.html

    I think there is a commonplace myth that exposure equals understanding; if you are around a certain group of people for prolonged periods, you get to know and understand them as well as anyone.

    In which case, you’d think that plantation owners would regularly give up, set their slaves free and negotiate fair pay and employment conditions…

    In fact, all positions of power have the potential to corrupt – not because people are mean or exploitative. A nurse who is afraid to look a quad in the eye will remain afraid to do so until somehow the dynamic changes from patient-nurse to peer – not peer as in fellow quadraglegic, but fellow human being.

    I hope that makes sense, very dopey today.

  14. I’m positive many of the people telling these first-hand stories (as in, “I have worked with…”) are looking for sympathy, as you say. I believe that there are also some who are looking for a more helpful way to frame their experiences but who just don’t know how to go about it. So they present what they see and experience, warts and all, and do pay attention to the feedback. The right kind of feedback can be very well-taken, even by people who don’t seem to be looking to change their attitudes. (And note that the people telling their lurid stories are demonstrating that they care about their relationships with residents/employers/patients; while many are very invested in that particular kind of us/them relationship, others are not, or at least less so.)

    I’m thinking of (this is second-hand, my ex participated in this and told me about it afterwards) a series of anti-racism workshops held in a hospital. Everyone was required to participate and staff considered this an appropriate forum to vent frustration and prejudice. One complaint was, “This isn’t prejudice, they really *do* smell bad! [of curry, whatever]. The animator’s response was to point out that many Haitians think that white people smell of vomit. The observation wasn’t contradicted, simply put in a larger context. It shut people up.

    Or a complaint by a European acquaintance of mine who was very unhappy about the social strain created by a particular immigrant group. He would go on and on about all the problems they created, and complain “I don’t like complaining like this, I don’t want to be a racist.” So I asked, How do these people understand and present the difficulties you’re talking about? And the answer was, “I don’t know, because they don’t have access to the media.” And that answer was enough to stop the venting, because there was now a larger context and a new way of asking questions about the situation. Which was really what he was looking for.

    I am not denying the horrible attitudes, just saying that yes, there is space for optimism anyway, even with the horrible attitudes.

    For the second-degree stories though, I’m afraid it might be much rougher going. Someone who is that invested in someone else’s stories sounds like they’re invested in an us/them alignment. They would probably have to have more first-hand experience having their own relationship with disabled people – as n. was suggesting – to be able to see things differently. Though as tqm^Amorpha says, the fact that they are invested in their second-hand viewpoint could make this very difficult.

    You also get this second-degree phenomenon with students. They learn about situations and about one way to frame them, and are all happy with their newly acquired knowledge and ability to parse. Then they take this oversimplified perspective and apply it indiscriminately with little or no first-hand experience. This, happily, you can expect to pass with time, experience and maturity. But it can be upsetting until it does. And really upsetting if it doesn’t.

  15. I did respond to some of them with a different perspective, and their response, their immediate response at least, was… just about anything but pleasant. Some even started spitting stories at me angrily like they were daring me to keep responding the way I was responding.

  16. Amanda, yeah, I know. I’m not challenging your experience. I know I’m one of those people who desperately want to believe that things aren’t as bad as they seem.

    I still think there’s room for optimism [what Ettina said]. Actually, I think we need to work on the assumption that there is, and work hard at looking for where it might be found.

    Also: I wanted to add an amendment to my post, changing “upsetting” to “upsetting or life-threatening.”

  17. One thing I have noticed about people repeating the first- and second-hand “horror stories” is that they all seem to have a desire to characterize certain groups of people as pity cases, and then take offense on their “behalf” if it was ever suggested that such people might not be pitiable and were, in fact, capable of self-determination and many other things they weren’t given credit for. “How dare you…” seems to be a popular lead-off, often followed by variations of “These people suffer horribly, you can’t even imagine. They actually blah blah blah (various “descriptions” couched in the worst possible terms, of the kind Amanda described). Their lives are terrible. You are horribly ignorant if you actually believe that any of them could ever get it together enough to (etc).”

    In other words, there’s a big component of wanting to believe tht they’re the brave advocates “defending” Those People by educating everyone about the “truth” of their horrible lives, even if they don’t even work with Them personally. Of course, they expect to always be seen as wonderfully caring and open-minded people for it.

  18. I set up an appointment this spring with the principal of the school that my three year old will be attending in the fall of 2007, to open up a dialogue and learn how the school would help educate my daughter. The principal also invited the regional autism program head to attend, which I thought was a good idea.

    At the end of the meeting I mentioned how pleased I was that in a previous phone conversation the principal had mentioned that she strongly supported the idea of inclusion where possible, saying that it benefited both the child and other children, who would learn acceptance of differences and diversity. The autism program head then added that she also thought it benefited both the child and other children. She went on to state something to the effect that it enabled the other children to see how fortunate they were and how others ‘had it worse’ then they did. To be honest, I was too stunned by the statement to know how to react.

    I still can’t quite believe that she said that.

    Fortunately, I think the principal’s idea of the benefits of inclusion is not based on the autism program head’s philosophy – although I do note that she was silent too. I can only hope her silence is either for the same reason as mine or that she did not want to reprimand her colleague in front of me. Regardless, I’m now looking for a Plan B. If my daughter does end up at this school, I think I will be spending quite a bit of time there.

  19. Just wanted to comment here as one of these people who have been “in home support for 20 years”. Ballastexistenz maybe keep in mind that dehumanizing attitudes aren’t just one-way. You refer to your “worker” as just some “LNA”. Do you ever think that maybe that LNA has feelings too. Maybe they feel like shit too.

    I can tell you that being a home support worker has completely destroyed my self esteem. People I go help often seem to take pleasure in reminding me that I am at the bottom rung of the health care ladder. The number of times I have been told “they don’t train any of you to do anything”…no, we are told that legally we are only allowed to do certain tasks. The number of times people I care for have run down other HSWs as “idiots”, “stupid”, “lazy”, or that “that worker that can’t speak english”.

    I am an easy going person who works hard and tries to get along with people but I still have had many tiems when people I care for have called me told me to “fuck off”, threatened to punch my “fucking face in”, thrown things at me, swung their fists at me.

    My family and freinds meanwhile think I’m a complete doormat to be doing a job like this. Many freinds have tried it and only lasted a couple of months or less. Hey, who likes getting threatend, screamed at, sworn at, bossed around and humiliated, clean peoples shit and piss.

    Yeah Ballastexistenz you are a just a human being like everyone else…congratulations, you can count yourself amongst the rest of the assholes.

  20. You refer to other HSWs as “other HSWs”, and I referred to this particular LNA as “an LNA” (not “just some LNA”). I fail to see a difference there, except that you appear to be really pissed off at your own clients and likely to take it out on people who haven’t even done anything to you.

  21. Pingback: Awareness, Support, Development » Blog Archive » Help! I’ve been “staffed”!

  22. There are some good points in these comments.

    I used to think that exposure=knowledge, but that isn’t the case. I go to a historically black college and thought I would understand African-American culture better by watching and listening to the people there.

    I’ve never been familiar with this subject; I have my own unfortunate white bias and it’s hard for me to understand any NT community. As I interact with African-American students, there are many subcultures, personal variations and historical contexts I learn of that make it increasingly difficult to generalize about them.

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