What do you do about the doctor?

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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Heavy sedation feels like whoa

So, I had a procedure today to determine what’s going on with my GI.  The news is good; with some minor adjustments in diet and the addition of a medication that binds liquid, it should be totally managable.  I’ve been on that medication before with no side effects, so this is about 99% positive.  (The only real downside is that I’m going to have to pay a lot more attention to the way my GI reacts to things, and may have to be more careful about substances like caffeine)

But to get to the good news, I had to make it through the procedure.  They gave me a combination of an opiate (to minimize ‘discomfort’ and sedate somewhat) and versed (to borrow my doctor’s words, “to make you forget”).  I remember things clearly up until the second dose of versed…and then I woke up in the recovery area.  I’ve heard of people having all kinds of bad experiences on versed, but this is the second time I was dosed with it, and all things being equal, it wasn’t all that nasty for me.  (Though I did have a reaction to something the first time that had me throwing up for a couple of days, I think that may have been my oh-so-delicate system’s response to the physical stuff they were doing, not the drug.)  I apparently take rather a lot to be knocked out – two to four times the standard initial dose.

There was some minor stress and confusion today.  I didn’t think about the fact that I was going to be knocked out and someone else was needed to mind poor Hudson.  The fiance had headed out for a walk and I couldn’t get him on his cellphone.  For a while it looked like one of the nurses was going to hang on to Hudson in the room with me, which would have worked out okay.  I was really impressed that no one seemed upset or annoyed or difficult about Hudson, even though I’d managed to make quite an unexpected imposition.  Granted, this hospital has always been totally awesome about the service dog.*  Their only concern was making sure that everything was handled in a way that kept the pooch comfortable, and the nurses were willing to totally go out of their way to take care of us – they were great when I explained minimizing interaction with him for the benefit of our partnership, which I’ve found a lot of dog-friendly places have issue with, but not here.  In the end, though, my doctor was running so late that the particular nurse who had volunteered to hang on to Hudson was going to be off shift.  They discovered that my fiance was in the waiting room, though, so he was able to take Hudson. 

Poor fiance was worried that it might be like that instance last summer when the ER barred Hudson, but it was really just a case of trying to keep the stress on the dog the lowest.  At least if he was with the fiance, he was being left with someone familiar to him, and his second favorite person in the world.  Apparently Hudson periodically whined while I was away – poor pooch.  That seems to be his typical response, though.  He doesn’t like being away from me.  I think sometimes he worries about what might happen while he’s not there to watch over me.  The fiance occasionally petted him when he whined, and apparently Hudson took that as a sign that they were going to me, because he stood up looking at the door he’d gone through when the fiance took him back to the waiting room.

Anyhow, so everything went well.  We grabbed an early dinner and had a brief stop in a store I enjoy to get a treat for later.  We got home and…well, they warn you that you aren’t to drive or make major life or business decisions, and I can quite tell why.  I’ve felt kind of…floaty…ever since, and I think I got dosed with the medications about 5 1/2 hours ago.  My head is fuzzy, and it takes longer for things to make sense than usual.  And oh, the bed felt so good to lie down in.  I spent a few hours curled up in bed reading mostly because bed felt so GOOD.  Just comforting and the right temperature and soft and…nice.  (I’m spoiled and have very nice sheets and a thick memory foam topper, oh yes I do.  I love them very, very, very much.)

I’m definitely not entirely back to myself.  I’m…here, but I’m drugged.  Not in an entirely unpleasant way, but everything feels just a little bit surreal.

…I probably should have put off writing the IT guy about my request for a listserv for a project until tomorrow, but at least I had the fiance read it first.  Oh well.  Worst he can say is no, I guess, and then a friend of mine has said he’ll find someone to host it if the school won’t.

*Almost all of my doctors are at this hospital, and the worst thing anyone has ever said about him is either that he startled them or that he’s in the way and needs to move to a different spot in the room.  They are always friendly and positive about his presence, and never once has anyone suggested that I shouldn’t have him with me.  Today was no exception – everyone loved him and wanted to help and even listened when I explained the ‘can not pet or interact’ rules, much as they wanted to love on him.  The way the hospital staff have responded to Hudson is part of why I ❤ that hospital and have everything there, even though it’s halfway across town.  I go where I am welcomed, you know?  It also helps that they consistently treat me as a person, not just a medical question or a disability.  The way this hospital acts?  This is real access, this is real accomodation.  This is me being a person with dignity and rights and intelligence and value and individuality in their eyes.

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Disability services – hit or miss

I feel like after my last post about the struggle to get a class moved to a different room, I needed to talk about how my law school has handled my disability as a whole.

Now, one of the interesting things I have to point out here when talking about how my law school handles my disability is that my law school is semi-autonomous from the greater university.  It creates an…interesting…situation for disability accomodations.  Not bad entirely; it’s had pros and cons for me.  The way getting accomodations works for me is like this: I bring my doctor’s letter to the law school’s disability coordinator, who we’ll call W.  The disability coordinator faxes the letter over to the university’s disability resources center. ( I officially have a file there and a counselor, but I’ve only really interacted with her over one issue.)  The disability resources center sends back its evaluation of what accomodations I’m to be accorded.  W and the law school student resources secretary then arrange for the accomodations.

Now, it’s definitely had upsides for me.  When I first came to law school, I was sick with a mystery illness that was causing me extreme fatigue and pain.  I didn’t get any answers on ANYTHING until January of my first year, so that first semester, I was operating completely on my own.  I had no accomodation letter, no documentation to suggest I needed assistance, nothing.  Despite the fact that the Disability Resource Center could do nothing without documentation, because it’s a semi-autonomous entity, the law school was able to give me a couple of accomodations: they gave me a keycard to the accessible door, they retroactively reset my status to part time so I didn’t have to accept ‘Withdrawal’ or Fs on my transcrips, and they arranged for me to have extra test time and a little room to myself.  These may sound like small things, but especially that retoractive part-time status really helped me that first impossible semester of law school and fibromyalgia.

On the whole, the set-up has been convenient to me.  The law school is in 2 buildings, one short block apart.  I know exactly where W’s office is.  I don’t have to try to make it over to the Disability Resources Center, which is halfway across campus.  W is in general a very nice, very helpful person, as is the secretary for that office.  The dean of students has been willing to get involved, which has mostly been a very good thing for me – it was her influence that got me changed to part-time retroactively my first year, and her influence that got me a mentor when I struggled academically.

It’s not perfect.  In my first year, I had an incident with a professor.  She said something that I read to be making fun of the way I walk because of my disability, because I was late returning to class after a break.  She never did that to anyone else who was late returning.  I went to W and to the dean of students, and crying I told them about what had happened.  What she had said.  The way she had stood there in silence, with the whole class’s attention drawn to me, as I hobbled with my pained little half-steps to my seat, before she resumed her lecture.  The another student in the class who was a person with a disability completely agreed with my reading of the situation – that she had made fun of my disability and deliberately subjected me to the staring of my classmates, who were already viciously unfriendly to me because of the way my disability made me different and because I knew too much.  My counselor/case manager at the disability resource center was appalled by what happened, and said that she would love to write a letter to the professor detailing the problems with what she had done…except that the relative autonomy of the law school and the existance of a disability coordinator there meant she’d be doing some serious stepping on people’s toes.  People whose cooperation I needed for my accomodations, for assistence with professors, so on.  So I had to let go the possibility of a strongly worded letter that took my side, because offending the people whose help you need is never a wise idea.  The dean of students eventually told the professor how I’d taken things, and the professor told me she hadn’t intended things that way.  I still don’t believe that and now, nearly three years later, I still avoid her – step out of hallways she’s coming down, avoid meeting her eyes and opening the potential for a conversation, moving away from her at Women’s Law Caucus events that we both attend.  It’s hard to forget people who have held you out for social opprobrium and shame.  People who mock the way you move because of your disability.

Anyhow, I’m sorry for that…sidetrack.  It’s hard to explain how badly I felt that I’d been failed by W and the dean of students at my law school without going into the details about what happened.

That January, I finally got an accomodation letter and we started playing with ways to help me with one of the issues I had an accomodation for.  To their credit, they were willing to try several different approaches I suggested before I decided that the one they’d suggested to begin with was going to be the best.

Since then, I’ve gotten a handful of new accomodations, and things have been gracefully managed on everything but this latest snafu with the classroom change.  They haven’t been able to do anything for me about professors’ attendence requirements as long as those requirements don’t exceed the 80% required by the American Bar Association (which has withstood challenges under the Americans with Disabilities Act), and I’ve yet to see a professor who required more.

To be honest, on the whole they’ve been thoroughly helpful and friendly, and a good place to go for advice.  I hate to think that you all have this image of a difficult and uncaring office because of this latest exchange.  To be honest, this latest exchange seemed quite out of character for them, which is part of why it upset me so.  They’ve done a good many things that were inconvenient for them on my behalf, and to have them suddenly react as if what I wanted was a nuisance and an inconvenience…well.  It was quite an unpleasant surprise.

Edited to add:  I just realized that I had forgotten one of the BIG things that the disability liason and the dean of students had worked out for me.  Right before the fall exam period for my second year, I fell and sprained my back.  Because of that, I couldn’t sit up for more than an hour or so at a time, and then needed a significant amount of time lying down flat.  Even that hour or so was only on my extremely comfortable couch – anything less than that, and I’d get half that time.  I couldn’t get set up in a position where I could have my laptop on the bed with me without causing at least as much pain as sitting up with it.  So they allowed me to take exams without time limits, and from my own home.  It was an enormous break in protocol, and it was all that allowed me to take my exams that semester.  They had no obligation to do such a thing, since it wasn’t a permanent state of affairs, but they did anyhow and I am very grateful for that.

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Sorry I’m so inconvenient

I mentioned a couple of months ago that I’d been diagnosed with POTS and that it made me extremely sensitive to heat.  And when I say sensitive to heat, I mean prone to dizziness, nausea and vomiting, collapsing, and fainting.  It’s really annoying, because it’s something that comes up at times when you wouldn’t expect trouble.

Like in one of my classes.

The main building of my law school is 8 stories tall.  On the upper 3 stories, there are 2 little boxy classrooms per floor.  They have a wall of windows that face into the atrium that goes up the center of the building from the third floor to the ceiling.  For the number of people they seat, they’re very small classrooms.  They seat about 35 people plus the professor, with 2 rows on the left and right of the classroom and two rows across the back of the room.

Unfortunately, they have a terrible tendancy of getting hot.  The higher in the building you go, the hotter these little rooms seem to get.  It’s a combination of poor air circulation, density of people, and heat rising through the atrium and passing through the wall of windows at the back of the room.

I missed the first two weeks of class.  The first week, it was incredibly hot and my boyfriend was out of town at a funeral, and Hudson had an accident on the sidewalk, prompting me to decide he shouldn’t be out in public for a couple days until things cleared up.  I honestly can’t tell you why I missed the second week.  I just don’t remember.

The third week, I went to class and was ROASTED.  It was hot enough that I felt ill and dizzy, despite drinking about a litre of liquids during the class, between my gatorade and my water.  The only reason I made it through was because I was wearing summery clothes – relatively skimpy.  Incidentally, that week, the professor stopped me and recommended that I switch from taking his class officially to taking the class as a guided research class.  He’s one of the professors who is very strict about attendence rules, and unfortunately law school attendence requirements have been held to be reasonable under the Americans with Disabilities Act, so there’s nothing I can do about it.  By taking it as guided research, I’d be able to miss more classes without failing.

I fired off an email to the disability coordinator explaining the problem with the temperature in the classroom and pointing out that it’s only likely to get worse as we swing into fall and they start turning on the heat in the building (not to mention the fact that I’ll need to dress in warmer clothing).  I got an email back from him stating that as I was taking it as guided research, I should have enough flexibility to deal with the problem.

That meant another week in the same classroom, which meant choosing a spaghetti strap, low cut dress even though the weather outside was a bit too cool for that.  I was still too warm, and that time actually felt like I might fall over when it was time to get up and go.  I had to sit for a while after people were leaving.  Fortunately, the doors being opened lets out most of the excess heat, so I was okay pretty soon after.

Of course I emailed him back and explained that because of the unpredictable nature of POTS, I’d have to not go to any classes in order to avoid the risk of a collapse or faint.  Perhaps the most frustrating part of the whole thing is that the first thing I lose is my ability to tell how my body is doing and what I need to do to prevent problems.  I was a bit annoyed that my original email explaining why I couldn’t be in that classroom wasn’t good enough for him.  It felt a little bit like they were trying to shunt me off to the side and make ‘accomodations’ that were the least inconvenient for them – put her in a guided research instead of a class, and then it’s all on her if she can’t get there!

In the end, they moved the classroom.  It’s not a huge improvement – we’re still in one of the same boxy little classrooms, just moved from the 8th (top) floor to the 6th floor.  The temperature is somewhat lower, though I do not know if it will be enough once the building switches from air conditioning to heating.

I hate things like this, where it feels like I’m treated as an inconvenience.  It’s not like I get some kind of power trip asking for accomodations.  I don’t push people around because it’s fun.  When I ask for something, it’s because I NEED it, and my health, safety, and ability to continue going to school are jeopardized.

Look, I’m sorry I’m so inconvenient.  But if you had to deal with the sheer number of inconveniences I deal with every day because of my disabilities, you’d realize that I’m really asking for very little.

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After the Separation

I mentioned in a couple of posts that Hudson and I had some difficulties after we were forced to be separated for 3 hours a week ago on Sunday.  I believe it was the first time in his life he was left entirely alone – always before, there has been company.  First his litter and his dam, then his puppy-raiser (who I know never left him alone because he was part of a prison program, so there is no leaving the dog in the other room for the night or similar) , then his kennel-mate and his trainer, and then me and the boyfriend.  He is a very emotionally needy pup, and will often come over and nosebump me to get my attention and a pat on the head.  When he is parted from me, he is always extremely happy and eager to be returned to me.  (this happens, for example, when I am ill and the boyfriend must take him out, or when I have a severe IBS attack and must run for the bathroom while the dog is eating his dinner, or when I need x-rays and other imaging done that would either be a health hazard or so loud as to unsettle him)

Being a very sensitive, needy dog who has never been left alone, he was quite upset to have it happen to him, and for so long!  It was somewhere between 2 1/2 and 3 hours altogether that he was left home.  I am quite happy to note that he did not become destructive at all.  I worried mostly that he might hurt himself trying to get back to me, but fortunately that did not happen.

That is not to say it was smooth sailing.

When I first came home, he was delighted to see me again.  He scooted around like he does when he was excited, his tail whipping so hard back and forth that it struck his own flanks.  He nearly leapt into my lap.

However, that was short-lived.

Like a small child, Hudson went back and forth – he was upset and wanted my comforting, but he was also upset with ME and wanted nothing to do with me.  He’d come over and bump me with his nose or his head to get my attention like he does sometimes when he wants affection, and after just a moment of petting he’d walk away from me.  It was totally abnormal for him, because usually he wants to hang out as long as I’ll pet him!  Other times, I’d invite him to come be petted and he’d just lay there looking at me, sometimes not even bothering to look at me.

Worse yet, from my perspective, is that he started ignoring commands.  It’s one thing for him to ignore me when I’m offering affection – it’s a bit of a snub and hurts your feelings a bit, but it’s not removing the very capabilities you rely on.  On the other hand, when your service dog won’t even follow you out of a room on command, you worry about relying on them.  When I tell him to stand, the command I use when I need to use him to steady me when standing or transferring, will he ignore me and keep moving, risking injury to us both?  When I ask him to pick something up for me, will he?  When I need him, can I rely on him?  Or will he keep ignoring me?

I suppose I’m lucky that I continued to be sick and not leave the house.  I had to do things for myself that he usually does – get up and turn on and off the light, figure out how to pick up things off the floor, use the edge of the bathtub to steady myself instead of the dog when getting up off the toilet, kick things out of the way instead of having the dog move them…it was a rough couple of days, but managable.  I don’t know what I would have done if I had to leave the house on Sunday or Monday.

On Tuesday, I had to go out, because Hudson and I were due to be tested for our recertification.  I was very, very worried that we wouldn’t pass.  A big part of the test is how well the team works together, and to judge by Sunday and Monday, we might not work well at all that day!  He ended up behaving fairly well.  Not at our best, but it was good enough to pass.  It was a huge relief to pass…and be done.  To not have to worry about this for another two years.

But I went through 2 1/2 days of my service dog not wanting to have anything to do with me, and that was their fault for separating us.  I went through more pain at the hospital, I was alone, and I had to deal with days of my service dog ignoring me.  If it weren’t for them, all I would have had to deal with last week was a nasty stomach virus.

And THAT, that I could have handled.

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Emergency fail

Well well well, wouldn’t you know it, I managed to get discriminated against twice in one night!  Saturday was quite the exciting night, as it involved me being ill enough that we were wondering if we should head to an ER before I went all floppy and semi-responsive and started having pain in my chest and difficulty breathing.  I also had a dehydration-induced migraine.

Looking back, I think the difficulty breathing was just that I was having difficulty doing ANYTHING.  When I get dehydrated, I have this alarming tendency to go from okay to NOT very quickly.  And, well, there’s not much like throwing up everything and continuing to throw up liquid out of your previously empty stomach to make you dehydrated.

I wasn’t able to help move me much, and we live in a narrow little row house.  Without my help, the boyfriend really can’t get me down the stairs.  He was getting scared and I was getting less responsive, and complaining that my chest hurt, so he called an ambulance.  I think it was a wise move given the situation.

Except, y’know, that the ambulance wasn’t terribly helpful.  First off, because we live in a narrow little rowhouse, they can’t easily get the gurney upstairs to the bedroom.  So they sent one of them up to help the boyfriend maneuver me.  After correcting him to not lever my shoulder (dislocated Thursday), I still had to manage to walk down the hallway, which was a near thing.  My legs were shaking, and I’m still surprised I didn’t just fold up.  Being vertical and dehydrated for me puts me at a high risk of collapse or faint.

We managed to get me down the stairs and to the gurney waiting outside our front door.  They get me on the gurney and strap me in, then wheel me into the ambulance.  As this is happening, the boyfriend decides to drive to the hospital because he thinks the ambulance will be too crowded with him and the service dog inside.  One of the EMTs is pretty cool and says something that we later realize may have been a warning about the ER, but the other one…the other one, who was driving, decides to stand outside the doors of the ambulance and harass me over the service dog.  What do I think he’s going to do to me in the ER?  It’s unfair to other people to bring my dog into the ER.  Why do I think it’s okay to do that?  So on and so forth.  I eventually tell him to knock it off, which he reacts to in surprise as if he wasn’t being completely inappropriate.

(Incidentally, my ankle partially dislocated on the way to the ER.  It wasn’t really anyone’s fault, but my feet were strapped in and we hit a little bump and there went my ankle.  It certainly added to the misery of the evening!)

So we get to the ER.  By the time the ambulance gets there, the boyfriend is already there with Hudson, arguing with security about letting my service dog into the ER.  Yeah, you got that right, security said no service dog in the ER.  It’s discrimination.  We’ve taken Hudson into other ERs.  We would have gone to the one we know is service-dog friendly (where, in fact, they love Hudson – yeah, they’ve seen him that often), but when you’re in an ambulance, you don’t have all that much choice over where you get taken.

So the boyfriend argued with security.  The first guard seemed like a decent human being, but one hamstrung by policy.  He had to call his supervisor, and THAT guy…that guy was the worst we ran into all night.  He said that “human rights trump animal rights” and ignored that it wasn’t Hudson’s rights he was trampling, it was MINE.  When I was brought from registration to triage, I noticed that Hudson and the boyfriend were gone, so I asked where my dog and my boyfriend were.  The triage nurse explained to me that they weren’t allowing the dog.  I told them, it’s like taking away someone’s prosthetic leg.  They argued that since I was in a wheelchair and would soon be on a gurney, I didn’t need the service dog.  I requested her supervisor.  Her supervisor came out, and they asked me what exactly Hudson does.  I explained a list of the things he does, and they said that since they could do all of that for me, I didn’t need Hudson.  I told them again that they were taking away my independence, that the entire point of a service dog is being able to do those things for myself.  I told them it was like taking away someone’s prosthetic leg, something they had no right to do.  They told me that they had to keep the dog out just in case someone came in with asthma and a dog allergy.  now, if they HAD a patient like that in the ER and couldn’t sufficiently separate us, that would have been a reasonable reason not to allow Hudson in.  However, the theoretical possibility is not.  Hospitals are allowed to restrict dogs from places like burn wards, where the slightest contagion can cause dangerous infections.  However, they are NOT allowed to just blanket refuse to allow service dogs into their facility.

The security supervisor kept after me.  The guard said they were trying for compromise and I said no, you don’t want a compromise.  You want me to do things the way you want.  The guard said no, but the supervisor said ‘I won’t lie to you, you’re right.’  I said that’s a bully’s version of compromise, and you’re no better than a schoolyard bully throwing your weight around.

The ER supervisor said I had the option of going elsewhere.  Bullshit.  When you’ve been brought in by ambulance because you’re barely able to stand with tons of assistance, you don’t have the option of going somewhere else.  Especially when somewhere else is on the far side of the city.  I told them to just get me through and get me out of here.

The security supervisor followed the boyfriend outside, where he was waiting with Hudson, and started harassing him.  He said that the boyfriend was ‘making trouble’ (by standing quietly outside after he’d given up on being able to protect my rights?) and kept after him about the dog being unnecessary in the hospital.  The boyfriend eventually took Hudson home, because he didn’t have any other options, and returned for me.  I think it was the first time in his furry little life that Hudson’s been left entirely alone, and to be honest I was worried he’d hurt himself trying to get back to me.  He’s always had someone with him – his puppy-raiser, his kennel-mate, trainers, me.

So I was left completely alone.  I was reliant on the nurses answering the call button (which took forever) for the most basic of things – needing to pee, needing the lights shut off and the door closed because of the migraine, wanting the damn monitor to stop beeping because it felt like someone was driving spikes into my head every time it beeped.  Things that my boyfriend or my dog could have helped with.  I had to wait for an HOUR at one point to get the call button answered, and the nurse walked in and pushed the ‘off’ switch without even asking me why I needed her, abandoning me with the fluorescent lights still on (my god are those things painful with a migraine) and the door open to all the noise of the ER including a woman yelling.  I was in so much more pain than necessary from all these little things that could have been done for me if I hadn’t been trapped alone by their discriminatory policies.  Bullshit they could do these things for me.  Bullshit that I’d be okay without someone to help me.  Bullshit bullshit bullshit.

I think my boyfriend being kept from me was retaliation for being ‘uppity’ and demanding my rights.  Another claim to file.

They have the right to bar a dog with reason – if the dog presents a danger to others (actual, not theoretical) or if the dog is out of control and behaving inappropriately.

I spoke to the security today and was informed that what happened was against policy.  However, as 4 people acting within their job capabilities denied me access, it’s still a violation for which they are liable.  I plan to sue them.  At the very least, they are liable for a $10,000 dollar fine.  I also want training to EVERY employee mandated.  I’m torn about whether I’d prefer a formal apology or money damages; the whole situation was egregious, I suffered more pain because of it, and damn is it ever upsetting to be discriminated against.  I cried as I lay there, alone and in pain, and they need to pay for that.

At this point, as I see it, I have 3 choices: the first is to take my case to the Department of Justice, which is the federal branch that prosecutes ADA violations, the second is to take my case to a comparable state agency, and the third is to find a lawyer and prosecute the case myself.  I’m inclined towards the third option because if I take it to a government agency, I have virtually no control over what happens and what is demanded as reparation on my behalf.

But believe me, no matter which path I end up taking, I WILL be prosecuting this.  It was a horrific experience, and I do not want anyone else to go through it.  With cases like this, the only way to get through to people is to hit them where they’ll feel it – the pocketbook.  I hate that this is the only way to make people really learn lessons, but so be it.

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Travel fail

I had a distinctly unpleasant experience today: I was discriminated against.

When you have a disability, you get used to a lot of the same kinds of discrimination: counters set too high, steps to get in that you can’t get over if you’re wheeled, restaurant owners telling you that you can’t bring your (dog, scooter, sometimes even wheelchair) in. It gets old fast, but you get used to it because it happens all the time.

It’s shocking, on the other hand, when you get it somewhere you don’t expect it. Somewhere it hasn’t happened to you before.

Yesterday, a taxi I called refused to transport Hudson and I.

I called the dispatch to get my cab and told them that I had a scooter that would break down and fit in the trunk. I didn’t mention the service dog because I’m under no obligation to do so.

The cab arrived 5 minutes late and knocked on the door of the house across the street, but I was watching for a cab to arrive so I saw him. I drove the scooter out, and I had Hudson with me.

The driver said, “You didn’t mention the dog when you called dispatch. You have to mention the dog.” I told him that I didn’t have to, because legally they had to transport service dogs. He repeated himself. Then he said he wasn’t the cab who was sent for me; they would be along in a few minutes. He got into his cab and drove off.

I’m sure all of you out there in cyberland have seen through what he said. Of course he was the cab sent for me! I live on a little tiny residential street. Cabs are rare here, and I end up calling them more often than anyone else on the street, because I have the most need of outside transportation.

Well, I wasn’t thinking at my best. It was first thing in a hectic morning for me, because my alarm hadn’t woken me and I’d overslept a whole hour and thus had barely gotten out the door at a near-acceptable time. So I waited almost 10 minutes, and then called the cab company to ask where my cab was.

They told me he was already there. So I told them about the driver who refused my service dog and drove off without me. They sounded pretty appalled and sent out a 2nd cab. That cabbie was at least nice and helpful.

I’m still shocked by the blatent discrimination. I’m waiting on a call back from the cab company’s manager to find out what they’re doing about the cabbie and decide whether I’m going to file a complaint only against the cabbie or if I’m going to file against the cabbie and the company. It mostly depends on how they respond to his wrong.

Fortunately, in the US, I have the Americans with Disabilities Act to make actions like that illegal and provide for legal recourse when they do happen. I can only imagine what it would be like in a country that didn’t have such laws in place.

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The difficulty with support networks

One of the problems with support networks is that the people in them have their own priorities. Now, that’s not anything against them – every person has different priorities from the person standing next to them. Even if you take a couple in an incredibly close relationship, they’re going to put different value on things. That’s the nature of human beings.

The trouble creeps in when the priorities downright clash.

Right now, I’m not supposed to be walking much at all. Not until I get my new knee brace, which should be the middle of next month. It’s inconvenient. It means that I have to use my scooter everywhere, and that’s a bit difficult. You see, I live in a house with 3 steps up to get in the front door. So I can’t just wheel my scooter out the door. Also, I don’t have a trailer or hitch-mounted carrier for my scooter, so to take it places, it has to be broken up and put in the trunk, then hefted out and re-assembled. The scooter breaks down, sure…but even broken down, there’s a 50-lb piece, which is far more than I can heft without hurting myself.

Now, typically, the boyfriend does all hefting of the scooter, and drops me off places. However, the boyfriend’s uncle just died yesterday, and he’ll be driving a couple hundred miles to his family for the funeral. He’ll be gone from Tuesday until the weekend, most likely.

I’ve called friends, and no one is available. I thought I was in big trouble. I really can’t get around without my scooter!

I lucked out this time – my neighbor is willing to give me a hand. We built a ramp a while ago, but it’s too heavy for me to move. My neighbor will put the ramp into position so I can wheel on out. I’ll use public transportation (which includes a longer ‘walk’ than I can do even when my knee isn’t busted, but I’ll be on wheels!). When I get home, my aide will put the ramp back out at night so I can come in (or she’ll break down the scooter and carry it in piece by piece – that may be easier for her, because she’s a small woman and the ramp is 8′ long).

It’s scary, though, when you need help and you go through your support network and NO ONE can help. It’s frustrating! Part of the problem is that when you have a major disability or a chronic illness, your support network is often thin because of the sidelining affect that ablism has on you and, well, we’re often less able to go out and socialize. So you end up leaning on everyone harder than you should. You find yourself begging favors of the same handful of people over and over and over, and you can only hope that you don’t burn them out.

And when you burn out one of the few people who helps you, man are you ever in trouble. So far, thankfully, I’ve been able to avoid asking the same people for favors more than a few times each (with the exception of the boyfriend, who kinda does everything), so I’ve preserved my social network as best I can. That looming threat always worries me, though…the thought of ‘what would you do if one of these people stopped helping?’

One can only hope it never happens.

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Disability Blog Carnival!

Welcome to the August edition of the Disability Blog Carnival! I’m very happy to be your host.

When I asked for submissions, I decided to make the theme ‘distance’. I think distance is an interesting concept because we use the same word to mean so many different things – the space between ideas, the space between here and there, the space between you and me, the space between us and them, the space passage of time creates, the difference between where we started and where we have gotten to, the space between understanding and not. Intentional spaces, ideological spaces, physical spaces, metaphorical spaces. It’s a word that I think sometimes encompasses much of the disability experience, because there always seem to be more distances we have to deal with.

Counter-Indicated: A visual representation of the distance between the various pieces of medical equipment I am supposed to be using; the buff colored wrist-brace with thumb immobilization can't be worn with the blue forearm crutches. The top of the left crutch and the bottom of the right crutch lean diagonally across the white canvas, trapping between them the buff wrist brace. Created by Kali, copyright 8/22/2010

Without any further ado, I bring you this month’s blog carnival.

From Maggie World, written by the ablebodied mother of a young woman with multiple disabilities, we have A Game of Inches. This post is about how physical distance, physical space can be incredibly important to creating and maintaining accessibility for someone in a wheelchair, using an accessible vehicle.

From Spaz Girl, a teenage girl with spasticity, we have The Importance of Crip Community. This post is about the importance of having a community out here, in ‘our’ space, where we are distanced from ‘their’ space. She talks about the way crip community helps us invision our futures, which are hard to see when all the role models we’re presented with are able-bodied.

From Lene at The Seated View, we have Bridging the Distance, a post about the way sometimes, people who do not have disabilities can expand their understanding and ‘get’ how important accessibility is through events in their own lives.

From Astrid at Astrid’s Journal, we have Then and Now: On Changing Abilities, and Why those Don’t Make Me Fake, a post about how changing over time does not necessarily mean increasing or decreasing disability. Sometimes, all it takes is a change in circumstances to create an apparent distance.

From Hand To Mouth, we have Assistive Technology and Accessing the Digital Divide. This post discusses the distance between how far accessible technology has come and how much technology most people actually have access to. How frustrating it is, to know that we have the ability to allow people to access the world in previously unprecedented ways, and yet we’re held back because the necessary tools aren’t spread widely enough. As the blog said, the bridge is so dear, so tenuous, as to be almost frightening to us on this side of the divide. How easily we could lose that access that we had to work so hard to obtain. And yet – and yet, does the chasm have to be so wide?

From Rightfully Deviant, we have The Community Imperative, a post about finding a crip community where you aren’t at a distance, a place where you and your disability just…fit. Just make sense. Don’t need to be justified.

From Amanda at Ballastexistenz, we have Distance Underthought, a unique post – a painting and an explanation of it that talk about distance and lack of distance where there is…understanding…among those of us on the other side. I don’t want to talk too much about this, because I very much liked her description of the ideas in the painting.

From Yasmin at Damn the Muse, we have So What Do You Have…, a post about a great interaction between her and her new neighbor/friend, that shows that we don’t have to be at a distance if people don’t treat us that way.

From In My Eyes: Life with Cerebral Palsy, we have From the Other Side of the Window, a post questioning film and life interpretations of kids with disabilities.

Finally, my own post. The Space Between is about the way the media creates greater distance between people with disabilities and people without disabilities using a handful of tropes that we see over and over and over. How much this distance could be closed, if the media would just let us tell our own stories in our own words!

Well, that’s it for this edition of the Disability Blog Carnival. I hope you’ve all enjoyed the ride! I sure have.

~Kali

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The Space Between

There is this space that exists between most people with disabilities and most people who don’t have them.

The trouble is, that space is mostly filled by media talk about disabilities, which create some very standard lines about what it means to have a disability. I think there are 6 basic lines of approach: person ‘overcomes’ their disability and triumphs; disability is So! Tragic!; caretakers for people with disability carry unbearable burdens and are angels if they carry it successfully; person with a disability is an angel (especially if they are mentally handicapped) nor “put here by god to teach a lesson”; person with a disability is cured (by hard work, by modern medicine, by non-Western medicine, by prayer, by meditation, by being positive, you take your pick); and people who do not have disabilities can imagine what it’s like to live with one.

But let’s break these down, shall we?

1) Person overcomes their disability.
Er, no. See, the thing is, a disability isn’t like a traditional horse handicap. Horse handicaps worked like this: the horse who was supposed to be the better racer had weights or distance added to try to even up the race. The goal of a handicapper was to get the horses to finish as close to the same time as possible. A photo-finish (that is, where the finish is so close a picture of the horses crossing the line must be examined to figure out who finished first) is the triumph of a handicapper.

We’re not like that. We aren’t carrying around some mystical extra weight to slow us down, nor are we running longer distances (most of the time – don’t get me started on how much longer accessible routes tend to be!). We’re just different. We do things differently. I don’t open jars with my bare hands, I have a tool that grips them and makes them easier to turn. I still get the jar open, just using a different method. I know of a number of people in wheelchairs, or people with dwarfism, who have lowered counters in their kitchen so that it’s accessible to them. I take the elevator instead of the stairs. Right now, with the newest knee injury, I get around on an electric scooter instead of on my feet. It’s just different.

If you want a handicap like the traditional horse handicaps, try looking at lack of accessibility! The number of stores you can’t get into on wheels, the ramps that are canted too steeply to be used safely, the way tilted sidewalks make it harder to move, the way handicapped accessible routes mean around the side or the back instead of up the front, the fact that we have to do better than our able-bodied counterparts to get the same jobs, and so on, then yeah, maybe we’re dealing with a handicap. It isn’t our bodies that make them, though. I’m not triumphing over my disability; if I’m triumphing over anything, it’s society’s views of me.

2) Disability is So! Tragic!
Let me say right off the top that while disability isn’t tragic, the process of becoming disabled (say, via a car accident) can be. It would probably be more accurate to say that it’s traumatic, though. It’s really damn hard to adjust to a new disability. That doesn’t make disability a tragic thing, though; that makes accepting new limitations and figuring out ways to deal with them hard, and it makes dealing with societal views of people with disability really tough to swallow.

I’m not saying that it isn’t hard to adjust. It is. Just like it’s hard to adjust to living in a new country when you haven’t learned the language and culture first. You have to figure out how the locals do things, you grieve for things you had in your old country but don’t have now, you have to figure out how to express yourself in different ways, and you have to break down all your old ideas about what that country and its people are like. So it is with disability.

If disability can be seen to be tragic at all, it is because of the way people with disabilities are treated. Social Security for disabled folks keeps them below the poverty line. Places aren’t accessible. Abuse happens to us at a higher rate because we’re seen as less-than. It’s harder to get, and keep a job because employers also think of us as lesser beings. There isn’t the kind of community support we need. Too many people think of accomodating people with disabilities as giving us special treatment. The Americans with Disabilities Act passed 20 years ago, but we are still not really equal in most people’s eyes.

The most tragic thing about disability is that because disability is viewed as tragic, murdering us is often excused or given a ridiculously light sentence.

3) Caretakers carry unbearable burdens and are angels if they do it successfully
Arrite, let me say first off – some 20% of people have a disability in my country; more in countries where there are things like landmines or severe environmental pollution that cause higher rates of disability. If taking care of us were some unbearable burden, then I think most of us would be homeless or suffering from terrible, chronic abuse – far more than actually are. Yeah, we have a higher rate of both of those than folks who are able-bodied, but it’s still only a fraction of the disabled community.

Now, I’m not saying that caretaking is easy. Even my easy-going, big-hearted boyfriend gets fed up with it occasionally – usually when it’s midnight and time for yet another late-night hospital trip. It is a lot of work, and the world as a whole does not give enough recognition for the hours our families and loved ones and employees put in. My aide isn’t paid even half what I think she’s worth. I think that family caretakers deserve a ton more respite care and financial support than they recieve. I think good caretakers are great people and should be respected for that…but I don’t think they’re angels. I think they have good and bad days just like the rest of us. I think they make choices and sacrifices like the rest of us, though those sacrifices are usually larger than the average. I think they’re human beings with a tough row to hoe.

Part of the reason I’m against calling them angels is that it says that only very few people can do it. And that’s not true! I think most people could be caretakers if adequate support were available. It also says that people who are caretakers don’t need support, which I think is even more untrue. People who are caretakers have more stress than the average person, so they need more support – family and friends who are willing to help and to talk, governmental support for respite care and aide hours, financial support to ease the cost of helping us.

The other part of the reason is that saying we’re an unbearable burden excuses abuse. People with disabilities are abused at a sickening rate. Why? Well, I think it’s a combination of a few things. First off, most abusers pick targets that are not as highly valued as they are – people with disabilities, children, women, and people who are trans*. Second, most caretakers do not have adequate support, especially in terms of respite care. Third, as a society, we have said that it’s excusable to abuse and kill people with disabilities because their lives are tragic and they’re huge burdens. It excuses teachers who abuse disabled pupils because “they aren’t trained to handle them”. It excuses aides and institution workers because “the work is just so stressful”. It excuses family caretakers because “they have to work so hard to take care of them”. It excuses murder because our lives are seen as having less value, especially if the person is mentally handicapped or has a terminal condition.

4) Person with a disability (especially mental handicaps) is an ‘angel’ or “put here by god to teach a lesson”

Wow. Yeah, that one just blows me away. The fact that someone is disabled doesn’t make them an angel, any more than a caretaker is an angel! I’ve witnessed plenty of kids with disabilities throwing tantrums. I know that living treated as a lesser being is enough to make yours truely rage pretty good sometimes. We aren’t angels any more than the next person. We don’t have some divinely kind and understanding souls, we’re just like you, but with a disability. And being of less than average intelligence doesn’t grant a serene disposition.

Now, for people who call all kids angels, I suppose I can sort of understand why they’d want to call kids with disabilities angels, but please consider that it may be construed that you think people with disabilities are angles and might just piss someone off!

The ‘here to teach a lesson’ bit is one that particularly riles me. I’m not your freakin’ lesson! I’m a person. Hey, once again, just like you, but with a disability. And perhaps a few less prejudices, if you see me as a lesson! If you treat me like a lesson, you’ll get one you deserve – that I have a temper! I am a person. I’m here for the same reason you are, whether you believe we’re all shaped in a creator’s image or whether you believe we’re just the most successful genetic mutation. People with disabilities aren’t put here by some greater being to teach patience, kindness, equality, or any other virtue you might associate with us. (though let me tell you, a great many of us would like to teach TRUE equality. In my experience, people who speak of someone with a disability demonstrating equality tend to mean that all souls are equal, not about equality in treatment, in housing, in funding, in hiring, or in any of the ways that people with disabilities are discriminated against) We are just people. We just exist. Same as you. Same as everyone else.

5) Person with disability is cured
Here’s a cold hard fact for you: most people with disabilities cannot be cured.

Hard work won’t cure a disability. It may teach you to cope with the disability in such a way that the disability is not obvious or is no longer difficult to deal with, but it doesn’t get rid of the actual disability. Even though I learned to spell by rote, I’m still mildly dyslexic. My spelling is far better than average because of the way I had to learn it, but I scramble things like phone numbers on a regular basis.

Contrary to the Zoloft commercial where the sad, depressed head bouncing around turns into a happy smiley head, medication doesn’t fix everything. It can help, but most of us don’t get fixed by a pill. And when you get to physical disabilities, the rate of ‘fixed by a pill’ or a surgery doesn’t get much higher. There aren’t many disabilities that can be fixed by surgery.

I believe in the power of healing energy and prayer and whatnot, but I don’t think they can make the body fix things that are impossible to fix. I think that if anything, they make the possible happen more effectively. The same for meditation and thinking positively. None of that will fix my genetic cartiledge defects, and to be frank I’ll get quite snippy if people start trying to push their prayer cure.

6) People without disabilities can imagine what it’s like to have a disability.

Um, no. No and no and no. First off, you can’t imagine what it’s like to have my disability because you can’t wrap your head around how pervasively it affects my life. It comes down to everything, even the way I hold my hands to type and brush my teeth, how I lay to sleep at night, what clothing I choose to wear. Secondly, you can’t imagine how I’ve adapted to it. When I busted my knee the first time, I hit the point where I could carry a tray and use crutches the first time within a couple of weeks. Humans are amazingly adaptable creatures – it is the greatest strength of our species. If I could learn something that required that much concentration and coordination that quickly, how much do you think we adapt to years of living with our disabilities?

If you sit in a wheelchair and push yourself around a bit, you’ll understand how much muscle you have to develop to easily push yourself around all day…but what most people will ‘learn’ is how hard it is to push yourself when you don’t have that muscle! (in all likelihood, they’ll have you sitting in the heavy hospital style wheelchairs that are really meant to be pushed by someone else instead of the low-backed, low sided, lightweight chairs that most people with disabilities use) Borrowing my forearm crutches may make your arms sore, but it only takes a couple of weeks on them to get used to it. Trying to wander around with blinding goggles or a blindfold on doesn’t teach you what it’s like for a blind person to navigate, it teaches you that you don’t know how to. I really, really hate those ‘disability’ demos that pop people into different kinds of adaptive equipment. All people really learn is that they don’t know how to use the equipment we live with, but they THINK they learn how hard disability is. And then they pity us. Yet more space that puts between us and them.

The space between people with disabilities and people without could easily be narrowed by real disability narratives – our stories, told by ourselves. How much better we might be understood with a few less ‘wheelchair bound’ narratives and a few more ‘wheelchair using’ stories! I wish that people could see Paralympic athletes as what they are – people who have trained and are at the peak of fitness and skill at their sport, instead of ‘poor crippled folks who have overcome their disabilities’. We overcome nothing but societal prejudice, and work WITH our bodies! One of the first things we have to learn is to stop fighting our disability and adapt to it. But your average journalist has never had to learn that, and doesn’t have the training to listen to us explain it. As long as our stories are told by people without disabilities, people who can’t really understand us, this gap will continue to be, and we – people with disabilities – will suffer for it.

(updated to add, whoops, I forgot point 4)

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