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Posts Tagged ‘ableism’

One of the hard parts about having a chronic illness is that some doctors are just going to fail you.  And some of them are going to fail you badly, in ways that are really harmful.

I can’t remember if I’ve already mentioned this before, but the first geneticist who I saw was an absolute prick, and beyond useless.  He told me I had “familial joint instability” and not Ehlers-Danlos Syndrome.  I saw him because he was local, in-network for my insurance, and his office claimed he was experienced with EDS.  He talked over me when I tried to ask him questions, like why he wasn’t considering my symptoms other than joint instability in making his diagnosis.  He made me feel disregarded, and above all like the most important thing for him was scrambling off to his meeting he was late to.  Hey, he’s the one who scheduled patients for that date and time.  It’s just not right to do that when you don’t have the time to actually deal with them and talk to them about the ramifications of the diagnosis (or non-diagnosis) you’re giving them.

My GP at the time didn’t believe I had EDS.  I only got the referrals to geneticists because I insisted on them and the rheumatologist said it might be possible that I had EDS.  She had misremembered things, and thought that the physical appearance that is a give-away for Vascular type (but NOT present in all people with Vascular type) was present in all people with EDS.  Things like narrow lips, a thin nose, and protruding eyes, none of which I have.  I have fairly full lips for a white woman, a button nose, and eyes that are neither protruding nor sunken.  I fought her to get the geneticist’s referrals.

After that really awful appointment, I was torn between wanting to cancel with the second (world-renowned) geneticist as a waste of time and being certain I needed to see her because she ‘got’ EDS and that first guy didn’t.  I’m glad I went with the second line of thought; online communities of people with EDS gave me the confidence to go through with it, even though it was going to end up costing me about $700, when you included the travel and the high price of an appointment.  She was amazing and kind and thorough, and checked all kinds of things I didn’t know were relevant, and gave me written recommendations for things my doctors at home could do to help.

The contrast between the two geneticists couldn’t be bigger, and it made me so frustrated to look back on that first appointment.  The chill, the lack of empathy, the lack of time for me, the inability to answer questions…it was just horrid.  It was, at that point, the worst experience I’d ever had with a doctor.  I couldn’t believe how unhelpful he was.  Being able to compare him to the good geneticist just made it all the clearer how awful he was.  I had to talk to my fiance to get verification that he really was as bad as I remembered, because I thought that perhaps my feelings had clouded the way he actually treated me, but my fiance agreed that my version of events was right.

So what do you do about doctors like that?  I mean, of course you avoid them.  Maybe you even write them negative reviews (I left him a pretty scathing one on every doctor rating site I could easily find!).  I thought about writing his hospital about how awful he was; I think maybe I should have, especially the scheduling issue.  Because it’s just not ethical to book someone in for an appointment, have them wait months and pay for it, only to give them insufficient time to actually talk to you about what the diagnosis means and what they should do about it.

Yes, you hope to find the good doctors.  At this point, the geneticist I saw who was so wonderful has a 2 year long waiting list, because she’s so good.  That’s a problem in itself.  And I know I am quite privileged to be in a position where I could A) push my GP into giving me the referrals I wanted, B) get a second opinion, and C) travel to a renowned specialist in my condition.  But even from a place of such privilege, it’s hard to go through.  I can only imagine how much harder it is for someone who isn’t a ‘good’ patient like me*, or who doesn’t have the health insurance or financial resources I have had access to.

*When I say ‘good’ patient, I mean the sort of patient that is perceived to be a good patient by medical professionals.  Young, white, cis, female, well-spoken, middle-class, generally able to be medically compliant and have always had access to medical care, no tattoos, natural hair color, only basic earlobe piercings, no addiction issues, in a steady long-term relationship, etc.  I know my force of personality has also helped me get the care I need, though in some cases it has taken far too long (my autoimmune issues probably should have been diagnosed years before they were, but that’s a post for another day).  I think it’s really problematic that so many of these things that are beyond the patient’s control affect whether a patient is seen as a ‘good’ patient and from there what quality of care they get.  I do have a few things that keep me from being an ideal patient – I’m fat, I don’t exercise ‘enough’ (though I do emphasize that I do as much as I feel I can), I’m disabled, many of my symptoms aren’t quantifiable from the outside, I take a number of daily meds including opioids, so on.  I’m not a perfect patient, but I think my demeanor and ability to advocate for myself usually is sufficient, combined with my ‘good patient’ points, to get me a high standard of medical care.  Other than fighting to see the geneticist, I’ve never been refused any referrals I ask for, and no one has suggested to me that my conditions are ‘all in my head’, even though many of them are hard or impossible for an observer to see.  I’ve also usually gotten the treatments I have decided were necessary.  I’ve rarely had my complaints brushed off.

…sheesh, I think maybe I need to write a post about the ‘good’ patient and how that’s a problem.  Probably talk about privilege a bit too, because medical care is one of the sneakier ways that privilege shows up.  I’ll put that on the to-do list.

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We flew back home Sunday (arrived early Monday morning), and on the way we had one experience that just shocked me.

My fiance had gone to take Hudson out to do his business, as it was a long connection so we had time for it.  I was on my scooter and headed to check in with the gate agents so they knew to pre-board me so we had time to get everything taken care of and settled properly.

A man started snapping pictures of me.  I couldn’t believe it!  He didn’t ask, and by the second picture I was giving him the ‘WTF is wrong with you?!’ look.

When my fiance returned with the dog, the guy once again took pictures.  When my fiance rode the scooter back to the gate agent so it could be checked, even more pictures.

I’m furious.  I don’t know what the hell people are thinking when they pull shit like this.  It’s not the first time it’s happened, and most of the time it’s people of asian descent.  I don’t know what’s going on, but I don’t like it.  It feels like being fetishized – people are taking pictures of me because I look disabled.  Or maybe it’s people who are taking pictures because I’m fat and disabled and use a scooter, so they can har har over the way I use a scooter because I’m fat (nevermind that I’m fat because I have a disability and have been on meds that increased my weight, and the scooter is to relieve pressure on my feet and knees that they can’t take because of my multiple, overlapping disabilities).  It makes me so damn mad.

I’m not here for you to take pictures of and amuse yourself with.  I’m just living my life and I’d like the space to do so without being a THING to you, thankyouverymuch.

(On the other hand, the guy who wanted to take a picture of Hudson because he’d never been on a plane with a dog before?  He asked first, and I was totally okay because A) the picture was of the dog, not me and the dog, and B) he ASKED and waited for me to okay it rather than just jumping in and taking pictures.)

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I’m going to start here with a basic truism that anyone who belongs to a minority or a disadvantaged group knows: nobody likes being told they are behaving in a bigoted manner, no matter how kindly the message is given.

Now, most of us don’t just say “wow, you’re a bigot!”  We say, “You said something problematic here, and this is why.”  Matter of fact, we often spend a great deal of time on explaining why something is problematic.

Recently, a dog trainer who writes for Dogster.com compared aggressive dogs to people with disabilities, in terms of being undesirable and requiring a ‘special person’ to adopt them and care about them.  Here’s the exact paragraph for you, so you can see why we were so offended:

The fact is that many of the best dog owners I know would not want to live with an aggressive or reactive dog.  This doesn’t make them “bad” dog owners, it makes them perfectly normal.  Many people adopt human children.  A small percentage of adopters of human children may be willing to adopt a child with Down’s Syndrome, severe birth defects, severe behavioral issues, a child who will always need someone to change diapers even into her teenage years, a child who is blind or deaf or may never speak.  Are the people who choose not to adopt these children horrible people or horrible parents?  Certainly not.  It takes a special kind of person to accept these additional responsibilities and limitations, someone who is willing to accept a variance of what is the “normal” parenting experience.

I’m sure at this point you’re wondering why on earth I titled this entry ‘On Integrity’.

Well, fellow service dog partner and person with disabilities, Sharon Wachsler of After Gadget, responded to the article where this comment was made.  She pointed out that it was a problematic comparison and explained why, including links to other sites that helped explain parts of the problem and how they can be avoided.  It was a very measured reply that explained what the trainer had said that was offensive, and the troublesome attitudes behind it.  The approach was I think friendly, and certainly respectful.  Sharon didn’t accuse the trainer of hating us, or of intentionally hurting us.  She simply stated that the trainer was perpetuating hurtful myths about what it means to be disabled, and what it means to be in the life of a person with a disability.  She also made a post in her blog including her original comment, which you can find here.

Now, I have to say this first.  Sharon’s response was far more measured and understanding than I would have been.  I am perhaps not the most mild-tempered person.  (Okay, so that’s an understatement).

So Sharon made her comment in the dog trainer’s blog.  The response, which was posted the next day, was extremely disheartenening.  I know, if you’ve come from that dog trainer’s blog, that you can’t see what I’m talking about because it’s been deleted – more on that later.  However, if you go to Sharon’s blog, the dog trainer made the same comment in both places – a comment that accused Sharon of slandering her, describing her as a hate-monger, and stated that she was not ‘the disabled community’s…Klan leader’.  To Sharon, who had tried to give the dog trainer links so she could educate herself on the issues, she said, “Which is worse? My making statements out of ignorance which are unintentionally hurtful or your statements which are intentionally hurtful yet misguided?”

Now, I know Sharon pretty well.  She’s a person who spoke only to educate someone she thought was open to learning.

A friend of the dog trainer leapt in, saying much the same but in harsher terms.  She started with the usual accusation towards people in a minority – that we were jumping to offense about something that wasn’t offensive.  Even the trainer herself admitted that some of the things she said could have been offensive but she hadn’t known that before she wrote.  This friend also stated that Sharon should have aired her concerns in private, instead of addressing a public post with a public comment.  It didn’t stop there, but I don’t think I necessarily need to get into the rest of the details.  You can read them for yourself on Sharon’s blog.

The trainer went to that woman’s blog, and referred to Sharon as ‘the hater’.  The hater, because she had chosen to try to educate someone about how hurtful their language was.  The hater, because she stood up for herself – and the rest of us – as being people.  The hater, because she said ‘we are no different from anyone else’.

Of course, some of us commented back on the trainer’s blog.  A woman named Rachel spoke out explicitly in support of what Sharon said, and in disgust at the response.

And I responded.  I wrote on February 16th about the fact that it doesn’t take ‘special’ people to love disabilities.  It’s a myth that hurts us because people choose not to engage with us thinking that our lives are just too difficult to deal with.

Nine days later, the Disability Blog Carnival was posted.  It included a further post on the subject from Sharon.

That very day, the comments by Sharon, that dog trainer, the dog trainer’s friend, and Rachel were all deleted by the dog trainer.  All of the anger and nastiness that was poured out by the dog trainer and her friend was deleted so that it couldn’t be seen.

Instead, the dog trainer put up a note saying that I – I, who came later and made a single point about being loveable instead of talking about all of the issues with what was written – brought to her attention that the paragraph was offensive and deleted it.  She linked to my blog…and to a couple of other places that are about people with disabilities rather than written by people with disabilities.

I suppose she was trying to play divide and conquer.  Because I was being ‘nice’, I was the good cripple and she could leave my comment up on her blog.

If I got through to her, I suppose that’s one victory.

In the process of playing this as a game, the dog trainer has sacrificed her integrity, though.  She has removed her own vicious comments, she has erased someone who spoke the truth that she didn’t want to hear, and she has hidden the attack of one of her followers.

If you’ve come from the dog trainer’s blog, I hope you choose to read Sharon’s blog and see what was really said.  See what really happened.  Then judge for yourself.  I challenge you to put aside your indignation and anger that someone you like was ‘attacked’ and read what was written.

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My LGBT organization that I work for is going to be the one of the beneficiaries of an event put on by the local fetish community.  Now, we’re a sex-positive organization, and I’m a sex-positive person, so on the surface, I think it’s a great idea.  My org will be there doing HIV testing, and my understanding is that the event brings down $15-20k every year for its beneficiaries.  Right now, we’re in a funding bind because our state is cutting our funding, so every penny coming in counts.

My first thought was that it sounded like a cool event.  Then I saw the postcards advertising the event.  The entertainment for the night is ‘Medical Mayhem’ and will include a “fetish Asylum”.  The only person pictured on the card is a young woman wearing what appears to be a straight jacket.

Oh. My. God.

As a member of the disability community and as a person of Jewish descent from Lithuania and Ukraine*, I can’t help but compare this to fetishizing the Holocaust.  Asylums were places where my people were abused horrifically.  If you don’t believe me, look up the Rivera report on Willowbrook or the documentary filmed at Pennhurst.  You will see children tied down to beds, trapped in cages, in their own filth – people who have had their motion severely restricted for so long that they look like Holocaust survivors with their lack of flesh, but pasty from being indoors all the time.

Even today, we have trouble with institutions for mental illness.  Recently, there have been pushes to make co-ed floors, because men do better in co-ed floors.  What they are finding is that women are victimized in these co-ed floors, sometimes by the men, sometimes by their carers. 

We know that people in institutions are often physically, mentally, and sexually abused.  It’s a systemic problem, when you put people in charge of those who are trapped and de-valued by society.  That’s not to say that all people who work in institutions are monsters – there are people there who care deeply about their charges and do their jobs to the best of their ability.  But there are also women like the one in my grandmother’s care home – she would pretend, with these elderly people with dementia and other mental problems,  that she was going to hit them in the face, and stop an inch or two from actually making contact.  We reported her several times, and yet she was still there, still acting that way.

We know that women who are severely incapacitated are abused sexually in their placements.  A 1994 article noted that some 40% of developmentally disabled women referred to a particular medical clinic showed signs of sexual assault/sexual abuse.**

That’s not to say that institutions don’t help people.  On the whole, the nursing home my grandmother was in was a good place.  I know people who’ve chosen to go inpatient for mental health reasons and have probably had their lives saved by institutions.

But fetishizing places that for decades were the warehouses to hide people with disabilities, where terrible abuses happened, where we left people to rot, where we paid less to take care of human beings than we gave the local zoo to take care of animals?***  Hell, even if you were just fetishizing modern institutions, you’re talking about places we KNOW women are victimized at higher rates than ‘outside’.

I’m pretty completely disgusted.

I spoke to our head of fundraising, and after a long talk, he finally got why it was offensive.  I’ll admit, the holocaust comparison didn’t come to my head immediately, so I compared it to fetishizing slavery, which was a faux pas.  But damn it, he didn’t get why this was so offensive and thought that it was that I was hurt – no, no, it’s that they are making light of something that has hurt my people.  Not just me, but decades worth of people like me – people with disabilities, people with mental illness.  Any time you fetishize medical scenarios it’s a bit problematic because of how people with disabilities are treated by the medical world, but when you start dealing with institutions…well, that’s when things get really ugly, really offensive, really horrific.

I’m mad that this showed up in my inbox.  I’m mad that an organization I believe in and work for is promoting this event and benefiting from it.  I’m mad that this event is happening at all.

But most of all, I’m mad that someone is making light of a place where people were and continue to be abused.

* As I understand it, we personally lost family.  I do not know what happened to our family in the Ukraine, but in Lithuania, family stories have it that everyone who did not immigrate to the US before the start of WWII was killed.  That is to say, of my particular branch of the family whose name I bear, only the descendants of my great-great-grandparents survived.

** Keels et all, Family views on sterilization for their mentally retarded children, Journal of Reproductive Medicine, 1994.

***From the 1968 report by Baldini about Pennhurst entitled ‘Suffer the little children’

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I mentioned a while ago that I tried to talk to my boss about her use of the word ‘crazy’.

Well, Wednesday I had a chance to talk to another intern who had been using the word ‘lame’ when she got upset.  I very much like this other intern, so I was afraid of having this talk.  It’s harder for me to approach people who I like about problematic language.  Especially since the conversation with my boss…didn’t go off as planned.

It couldn’t’ve gone better.  I phrased it simply.  “Lame refers to having an ‘abnormal’ gait.  Like me.”

She was shocked to realize how hurtful her language was, and promised in the future to try to remove it from her language.

I thanked her.  Because that response?  That’s the response of a true ally.  I don’t expect people to get it right every time, to get it right from the start.  But when a person is presented with a choice of respecting or ignoring the word of a person from the minority group, I think that’s when you find out who your real allies are.

Fellow intern, you can count yourself as my ally.  I sure do.

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I have had words with the director of the legal department I work in about using the word ‘crazy’.  It was a pretty fruitless discussion, to be honest.  I didn’t self-identify myself as crazy to her; I’m probably more in the closet about that than I am about the fact that I am attracted to more than just men*, and even THAT I almost never discuss with anyone I’ll see face to face.  It’s all information I’ve had people use in ways that made me profoundly uncomfortable.

Well, this week it suddenly got worse.  We were looking at custody cases, and in multiple cases my professor referred to people doing ‘crazy’ or ‘insane’ things.  In none of the cases were there actual references to mental health issues – it was all things where the professor could have subsituted ‘absurd’ or ‘ridiculous’ and managed to express an almost identical concept.

Look, when you speak of crazy, you speak of people like me.  People who live with mental illness.  People who do occasionally do irrational things, or lose touch with reality.

That doesn’t make us people who try to cut off our child’s relationship with our former partner, who is their second mother.  Nor does it make us people who donate our sperm and stay in the picture with time, gifts, money, etc, and then get shocked when they end up on the hook for child support.  It doesn’t make us women who lie, cheat, get artificially inseminated with the sperm of the person they were having an affair with even though the affair ended two years before the insemination, lie to the doctor involved, and try to nail the sperm donor 5 years later for child support even though they’d had no contact since the child’s birth.

Now, don’t get me wrong, some or all of these people may have mental illness.  But if you don’t have a reason like a psychologist’s testimony, don’t go attributing people doing rotten and absurd things to each other to crazy.

I’m crazy.  I have bipolar disorder and PTSD.  I live with swings through depression and mania, occasional episodes of paranoia, and trouble with people getting too close to me physically.  I have, on a few rare occasions, hit someone because I was triggered by something they did, and I was so afraid that I needed them to get away from me IMMEDIATELY.

That doesn’t make me into someone who hurts others because they can.  It doesn’t make me someone who is willing to inflict emotional harm on a child because I don’t like someone they care about.  I am not them.

But I am crazy.

* I say ‘more than just men’ here because bisexual is a really, really problematic word.  It’s cissexist and binarist, and doesn’t recognize that there are a lot more varieties of gender than ‘male’ and ‘female’.  I personally know people who ID as queer, agendered, and bigendered, who would be made invisible by the term bisexual.  I prefer heteroflexible, but even that is problematic because it still has that binarist issue.

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This is something that has bothered me for a long time, and actually led to one of the very few spats between the boyfriend and I (quickly mended, once we both cooled off a bit).  I really hate the use of disability-based metaphors.  Hate them, hate them, hate them.  I believe that they’re part of what makes disability such a fearful, distorted, tragic cloud to people who are able-bodied.

It’s all well and good to say they’re bad, but I think it makes more sense if I actually go through some of the more common disability metaphors so you can see what I mean

Crippled – this one gets used ALL THE TIME.  The city was crippled by an unexpected snowstorm.  The political entity is crippled by corruption.  So-and-so was crippled by a powerful emotion.  The poor are crippled by their lack of savings.  I’ve even heard references to people being crippled by scruples.  Here’s the thing – crippled has a pretty specific physical meaning – it’s a physical disability, usually related to walking.  What being a crip really means is that you have to get creative about how you do things and how you get around.  It doesn’t mean that you’re unable to do things!  I think these metaphors that tell us an entity or person is incapable of doing ANYTHING (or at least, anything useful) really emphasize that being crippled is being useless.  And as someone who identifies as a crip, I can tell you I’m damnwell not useless!  I do a great many things, including my work at a legal center for people of limited means and my disability advocacy, that I think have a great impact on the world.

Blind – I bet you can’t count the number of times you’ve heard this one –  blinded by viewpoints, blind to miss facts, blind to misunderstand intentions, blind to misread things, so on.  It’s definitely a favorite metaphor.  I count short-sighted in the same category, as short-sighted originally means nearsighted (as in, someone who can only see the shorter distances, not the longer ones).  Similarly, long-sighted originally means farsighted (as in, someone who can see things at greater distances, but not up close – someone who needs reading glasses).  We use sight metaphors to a ridiculous extent in our lexicon.  And through all of these, we imply that people who are blind or nearsighted are incapable of planning, unable to comprehend the information available, so naive as to misunderstand the motives of others, and similar issues that have NOTHING to do with sight!

Retard/retarded – (I am using the whole word only for clarity; I’ve written other social justice related pieces about how awful and hurtful this word is.)  Just mentioning this one makes my blood boil, in part because we generally don’t use this one as much of a metaphor.  When we say someone is a retard, we mean that they have so low an IQ as to fall into the category that used to be labled ‘mental retardation’.  We mean they’re stupid, they’re foolish, they’re naive, they’re incapable…but mostly that they’re stupid.  Plenty of people will argue that the way we use the word today doesn’t tie back to those roots, but think critically about the last time you heard someone use that word – I bet it was to belittle someone’s intelligence.

Lame – I’ll admit, part of my hatred for this one stems from its use in my own family, and finding it over and over again in my own language.  Lame means having an altered gait, typically a limp.  If you don’t believe me, ask someone who deals with horses what it means for a horse to be lame.  Now we use it for all kinds of different meanings – stupid, foolish, clumsy, easily injured, ridiculous, unfair, etc.  A lame call in a sports game, a lame excuse, a lame-o who just doesn’t get it, etc.  Notice how having an altered gait – like me – suddenly gets turned into all these nasty negatives?  Listen for people using the word lame around you.  I bet they aren’t using it to literally mean a limp, and that what they’re using it for is more negative.

Mad/crazy – Here’s one we use to a ridiculous extent in our language.  I’m crazy-busy.  Work was crazy today.  …and then she just went crazy!  I am just crazy about this designer.  You’re driving me crazy!  The way they treated her was just crazy.  That idea is just crazy.  Political opponants are crazy.  (most of which you can substitute mad for crazy and get the same meaning)  Yeah, that’s not exactly the same as mad or crazy meaning someone who is experiencing psychosis (a break with reality) or neurosis (not a full break with reality, but having an altered relationship with reality).  These words originally mean someone who has some kind of mental illness, and are being reclaimed as such.  Most uses of crazy are dismissive, ways to marginalize people and ideas.  Using them for negatives has obvious problems, but what about positives like ‘crazy about this designer’?  Well, it still means ‘overly’ or ‘too much’ – when we say things like that, we mean ‘I’m excited about this designer beyond reason.’  See how even that seemingly positive thing slides around to a negative?

Look, using disability as a metaphor tends to come from one basic problem: linguistic laziness.  There are SO many other words that can be used!  Foolish, ridiculous, thoughtless, senseless, hampered, troubled, restrained, naive.  Just to name a few.  When you use disability metaphors, you hurt those of us who actually have disabilities.  I am NOT your metaphor.  Find a new one.

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