You expected a tip for that?

Right now, I’m on a combination of meds they don’t allow me to drive on.  It’s annoying, but before that my fiance was doing most of the driving anyhow, so the only change is that now I use cabs when he can’t give me a ride.  On the whole, it hasn’t been a big deal.

Friday, I called a cab to take me to physical therapy.  The cab got here and I walked out to it, with Hudson, a novel, and a change of clothes for exercising at physical therapy.  When I get to the cab, the cabbie is talking on his radio, and he locks the doors right before I try to open them.  I heard the sound of the locks going, and I assumed he was unlocking the doors.

He gets off the radio, and gets out and announces to me that I needed to tell the dispatcher that I have the dog, and that he has to put newspapers down on his seat.  He then spends the next 5 minutes scolding me for not having something to cover his seat.  He tells me that the city government will fine him, and that the other driver of the cab will give him a hard time over the smell (from my very clean dog?), and goes on and on and on.

Look – I’m disabled.  By the time I have all the things I need to be running around on a chilly day and waiting for people and doing physical therapy (or school, for that matter), I’m about maxing out my carrying capacity.  I can’t bring along one of the rugs I put down for Hudson when I have someone else to carry things.  And I don’t have a responsibility to do so.

We get to my physical therapy location, and I use the credit card machine in the back, and then he asks me if I am going to tip him.

No.  I do not like people who expect me to do all kinds of bending over backwards for them because I have a service dog.  I do not tip people who scold me.  No way.  You want a tip, you treat me with respect.  I would not have objected at all to him putting newspaper down for the dog, even though it made Hudson uneasy to lie on crackling paper.  But scolding me?  Uh-uh.

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Working on Chronic Illness Time

One of the frustrating things about having a chronic illness is that you often have to work on its time.  You can have all kinds of plans, only to have your illness decide it feels like kicking your butt worse than normal.  Or maybe you plan for things to be bad, only to have a good day.  Maybe you just THINK it’s a good day, so you over-extend yourself until you’re near collapsing far from home.  Or maybe you just have a bipolar meltdown and are having trouble getting out of bed because your sense of impending doom is so damn intense.

I’ve been dealing with a lot of stuff healthwise lately.  The prescription they put me on for the pain and swelling in my joints seems to disagree violently with my GI system.  My pain specialist told me to go off it for a week, which helped enormously with my GI but wrought havoc on my joints.  They’re now almost as puffy as they were when I first went to the rheumatologist.

It’s frustrating, because I’ve made commitments.  I’m working on a research project that is intended to become an article written with a friend.  It’s a big deal – law students rarely get journal articles published, so if I do, it’s a major feather in my cap.  It’s also on a subject I care a great deal about: privacy and the internet.  You see, I think we should be able to talk freely and read freely, without someone able to track every website I visit and every comment I make easily.  I think it’s a good thing if it’s hard for the government to just jump in.  If it’s important, the government has the resources to break most privacy systems that exist, they just want to have things set up so that it’s easier to do.  And if you make something easy to break, the government is not likely to be the only entity to take advantage of that.

Anyhow, I’m getting sidetracked.  So I have this project that is important to me both career-wise and in principle.  I have deadlines and people relying on me to do work, and frankly sometimes I can’t.  Sometimes my body is so broken that doing anything but lying in bed reading a novel I’ve already read a dozen times is impossible.  When things are bad, even a new novel – no matter how straightforward it is – is more than I can wrap my brain around.

When you work on chronic illness time, you have to have some give in your schedule.  Maybe you’re lucky and have a flex-time schedule that allows you to get your work done whenever you are in the condition to do it, whether it’s 9 AM or 2 PM or midnight.  Maybe you work few enough hours that you can rest enough between them to keep going.  All told, though, it’s hard.  It’s hard and it’s frustrating, and it makes you look like an unreliable flake to others.  It makes you feel like an unreliable flake.

For me, that inability to know how well I can keep my commitments is the hardest part.  It makes me question whether it’s worth it to finish law school, because I don’t know if anyone will be willing to hire me afterwards, or if I’ll be able to work for myself.  It is the one hint of bitterness for me in my fiance’s success at getting his job – the knowledge that such a job may never exist for me.  And it is only a hint; the vast majority of me is deeply happy for him.  And, er, also pleased that there will be money to buy shiny things, like fancy things to put in my hair and nice fiber for my spinning wheel and a silk robe to wrap myself in.  Okay, so I’m a hedonist and a glutton, but these are the small things that make me happy.  (If you’re curious about the nice hairthings, I’m going to be buying a hair fork from these guys – http://www.etsy.com/shop/grahtoestudio?ref=fp_ph_2&src=prvshp.  I am thinking about getting something custom – they had this lovely fork with a crescent moon at the top, and I think I want one of those in maple, which is pale and lovely.  Also, if you’re thinking about buying something from them, please tell me, because they have a referral program whereby I can get credit towards pretties.)

Ye gods this is a wandering entry.  I should know better than to write tired, which I am doing.  My block had this godawful block party today that involved a DJ playing music at rock-concert volume.  In the house with the air conditioner running and good earplugs in, I could still make out every word of every song.  It has left me with a bit of a headache, I’ll admit.  Also, I just went back on the medication I mentioned earlier, so it hasn’t had time to do me much good, which means that everything HURTS.

So this is what working on Chronic Illness time looks like: this is the time when your chronic illness makes it hard for you to write coherently and cohesively.  I know what I’ve written can be read, and the meaning is reasonably clear, but it rambles and forks like a bramblebush.  And why?  Because it’s hard to edit when you’re like this, and it’s harder still to make yourself stay on topic.  Obviously my mind in this state is pretty useless for researching for an article, much less trying to write anything!

So goodnight, everyone.  Hopefully, tomorrow will be a more brainful day.  Also, look for the announcement for the next Assistance Dog Blog Carnival here sometime before Friday.

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On Integrity

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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Offensive? Damn straight!

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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An intervention goes right!

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 am not your metaphor

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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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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The Fall-out

Well, I knew a day like Wednesday would have fall-out.

Because of the taxi cab discrimination, I took public transit to get home. It was harder than I expected. For one thing, the first subway station I went to was 4 blocks from work (because it’s a solidly accessible station), and it had a broken elevator and was thus completely inaccessible. So I went back two streets to the partially accessible station and hoped I was on the accessible side. I wasn’t, but there were ramps that said ‘police use only’ right next to the stairs leading you up over the subway to the other side, and I’ll admit I used them.

Then I got on a train that wasn’t due to stop at my stop, and had to get off a stop early. If I had waited there just a minute, the next train that would have gone to my stop would have been there, but I had decided that I couldn’t wait in the heat not knowing when the next train would come. I was in the pedestrian overpass when the next train came.

So then we had to take the longer route home. Poor Hudson had already been dragged 6 blocks in the heat, poor thing, and we had almost a mile from the station to home. He was panting hard and I’d had to slow down my scooter because he couldn’t keep up his trot. I got home about 20 minutes late, but at least I’d called my aide so she knew I wouldn’t be on time.

I couldn’t make it into work the next day. With POTS, it tends to take days to recover from heat exposure, and this is no different. I’m still feeling out of sorts today. I missed class yesterday as well. I also collapsed. I was getting up off the couch and I got to standing and then suddenly I was on the floor. I nearly squashed Hudson, but he had the sense to dart out of the way. I got stuck laying there for a while. I don’t know how long, only that Hudson was worried about me and nosing my face and at first I couldn’t even push him away a little. I couldn’t even bring my hands up to my face. I probably should have called myself an ambulance. Unfortunately, if I’m at the collapsing point, my brain is pretty badly addled and my judgment sucks. I was able to reason that they would have to break down the locked front door, and that was a bad thing…and I really never got farther than that.

I’m now in a bit of trouble, because at this point I’ve missed 2 scheduled days of my internship. I have to talk to the disability coordinator, and I’ll probably need to get a note from my doctor explaining POTS. I’m sure I’ll have to make up the time.

There was one good piece of ‘fall-out’. Well, at least I think it’s good. Yesterday, I called the cab company and spoke to their manager about the way I’d been treated by the cab sent to pick me up. The manager was both very apologetic and clearly upset by the discrimination. He said that driver would be taken off their roster, and he told me what I needed to do to get him reviewed for possible loss of taxi license. I figure if he loses his license, I’ll consider it enough, but if he doesn’t I may file an ADA complaint against him. I think it needs to be done because the next person he discriminates against may be in worse shape than I am and less able to defend themselves after the fact.

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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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