What is with some people?!

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

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

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

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

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

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

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

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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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When you speak of crazy, you speak of me.

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

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

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

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

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

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

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

But I am crazy.

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

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It’s easier not to

Obviously this title could apply to a lot of things, but I’ve been stewing over a particular set of things it’s easier not to do/be.

It’s easier not to be political.  See, once you start digging into ideas of feminism and anti-ableism and the like, you start seeing sexism and ableism and racism and sizeism and heterosexism and…fill-in-the-blankism everywhere.  Ism ism ism ism ism!  And when you see them, they sting more.  They make you angry more.  They frustrate you more.  They make you wonder about other people more.  They make you wonder if you can actually make a difference.

To give you a very basic idea, you see them in TV.  My boyfriend and I have recently started watching the show Jeremiah though our netflix subscription.  Jeremiah is a post-apocalyptic show, set 15 years after a virus that killed everyone in the world above the age of puberty.  We’ve watched a grand total of 2 episodes at this point.  So far, I’ve been seeing race fail and sex fail.  The race fail: 1) the hero is white, the sidekick (who is also the more comic of the two) is black; 2) when they appear to pair off in the first episode, the white hero pairs off with a white woman while the black sidekick pairs off with a woman who appears to be multiracial; 3) the white hero is noble and self-sacrificing and has some higher goals; the black side-kick is clever but rather cowardly and selfish; 4)  black characters are supposed to appear ‘ghetto’ but not white characters; 5) people of color have to be saved from white supremacist group by white hero (who is helped by black sidekick and other white dude, but the ideas on how to rescue them belong to white hero); 6) kidnapped woman has to be saved by white hero.  The gender fail: 1) both hero and sidekick are male; 2) women-as-commodity; 3) women walking around half naked while men are fully clothed; 4) female sex-workers, but no male sex-workers; 5) (as mentioned in race fail) the woman who gets kidnapped and is going to be gang-raped by her kidnappers gets saved by hero; 6) the only surviving carrier of the virus from 15 years ago is female – she is trapped in an airtight room, a lab, and kept alive in the hopes that someone will learn to make vaccines from her blood and save the rest of the world if the virus comes again – so we have in this instance alone: woman must be taken care of (by a male character, of course), woman as passive vessel for the virus, woman as potential cure for the world, woman who lives only because she might save others.

I’m not even touching the ideas of ableism there, because we don’t meet people with disabilities in the world of Jeremiah thus far.  Which is, of course, its own ableism – either the idea that people with disabilities couldn’t adapt to living in the post-apocalyptic world of Jeremiah OR the erasure of people with disabilities even though they make up circa 20% of the population.

It’s harder to just relax and enjoy things when you keep getting bitten by all these little fails and problems.  When you keep noticing that advertising, shows, the conversation of people around you, is loaded with -isms.  It’s hard to not have reservations about things, because there are so many little twingy things that keep poking out at you.

Life was a lot simpler when I wasn’t quite so political, when I wasn’t quite so aware.  I don’t want to shut off that awareness, because I know it’s important for me to see these things and call them out.  I just occasionally wish for the days when I didn’t see all of this.  It gets downright depressing when you realize that nothing, NOTHING is without -isms and fail.

…even you.  That may be the hardest part.  When you notice patterns in your own thinking, in your own speech, that are full of -isms.  That you have to continually be aware and be willing to change if you are trying to fully commit to the idea of a world without discrimination.  It’s hard.  It’s REALLY hard.  When you notice that the language that you’ve used since you were a child is problematic, you can’t just say ‘okay, so I’ll stop’.  It keeps creeping in.  And so you call the driver lame, or a spaz, or stupid.  And perhaps the worst part is, sometimes you don’t even catch that you’ve said it.

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Balancing Career and Disability (part 2 – accomodations)

Sorry it’s been so long between these Career and Disability posts. Live has been a bit out of control lately, and I’m afraid my blog has suffered a bit because of that.

So. I talked a bit about what a person has to do to balance career and disability in my first post, which you can find here.

One of the things I talked about in that post was accomodations. Since I know a lot of my readers aren’t disabled, or don’t have official accomodations, I thought I’d walk you through what the formal, legal accomodation process looks like. I’m saying ‘company’ here, but this process tends to hold true for companies and for schools, though schools are required to do a LOT more accomodating than companies are as a general rule. There are exceptions.* For the record, I’m dealing with what happens under the Americans with Disabilities Act in the United States. I’m nowhere near familiar enough with other accomodation systems to write about them, though I understand the kind of push-and-pull negotiations that I’m describing happen under them, too.

So let’s start with the basics. What’s an accomodation? An accomodation is a limitation on what you can be expected to do in either the work or school environment. It is a restructuring in some way that is supposed to make the place accessible to you in an equivalent way as it is for everyone else. Accomodations can be modifications to the structure, location, or the job itself.

As soon as you know you need an accomodation at your job – hopefully before you start work there, but ‘as soon as possible’ is important here – you go to your doctor and you get a set of restrictions written up. The restrictions say exactly what you can and can’t do – for example, for quite a while I had one that said I couldn’t lift more than 35 lbs overhead and more than 50 lbs overall, to protect my bad shoulder. I also had a restriction on how long I was to be placed in a kneeling or crouching position, to protect my knees – I think no more than 15 minutes without 5 minutes of being out of that position. In order to get an official accomodation, my experience is that these restrictions have to be very specific – it can’t just say ‘no heavy lifting’, it needs to say ‘no lifting over X weight’. They also need to say what the company needs to do to accomodate your need, for example ‘requires parking within 100 yards of her office, due to difficulty walking’. The more specific the note from the doctor is, the clearer a guideline it presents to the company you’re getting an accomodation from – an absolutely vital thing. If your note isn’t specific enough, you’ll find yourself bouncing back and forth between the company/school and your doctor. “does this cover it?” “No” “Dr, can you write a note that says X?”

Now, getting this note is not always a walk in the park. Some doctors don’t like writing for accomodations, for a variety of reasons including internalized ableism. I’ve had doctors who refuse to write notes for anything but other doctors and treatment, which made me want to pull my hair out! I’ve also had doctors who were great and worked with me and faxed several versions of the note to try to get specific enough to satisfy my employer (which was REALLY frustrating for both of us). Getting your doctor to understand why you need an accomodation can be frustrating. My current accomodations letter actually came from my neurologist, back when we thought I might have a neurological disorder in november or so of ’07 – which is to say, the doctor had no idea why I had the problems I had, nor did he have any way to verify that I needed the accomodations I outlined, but he was willing to work with me because he thought it was very important that I maintain as normal a life as possible, which meant staying in school. Fortunately, by then, I knew what accomodations letters should look like, so it only took 1 version to get what I needed carried out.

Anyhow, back to the process. So now you have your doctor’s note specifying what you’re not supposed to do.

You take it to the company. Now, the company does NOT have an absolute requirement to give all necessary accomodations. (on the other hand, a school recieving federal funds has a much stronger mandate to accomodate!) The company has to give necessary accomodations when the person can still perform the core duties of the job. Many a fight over accomodations revolve around what ‘core duties’ entail, and more than a few court cases have been fought over that very point. If a company wants to fight you on giving the accomodations, this is frequently one of the ways they will do it – by saying that if they give you the requested accomodation, you will not be fulfilling one of the necessary and important parts of the job.

In theory, the question of hiring and accomodating are different processes. Your need for accomodation is not supposed to be part of the hiring analysis; they are not supposed to consider whether they will need to bend their policies and practices to work with you. However, a great many companies use the principle I just talked about to un-hire people who their hiring process approved. I’ve come very close to having it happen to me. The company cannot revoke its job offer unless they come to the conclusion that you cannot fulfill one of the central requirements of the job, but as I already said, that’s quite a fuzzy area that is often a battleground.

The company may propose alternative accomodations that they believe will equally make the workplace accessible. Your guess is as good as mine as to whether these are actually going to be worthwhile propositions – I’ve heard it going both ways. Generally, these alternatives are a matter of monetary cost. Usually, they’re what in the law we call a ‘good faith’ effort – the company is well-intentioned and looking for ways to try to make things work well for both the company and the individual requesting an accomodation. Sometimes, though, they’re used as a way to make work impossible but try to shield the company from liability – “look, we accomodated zir**, but ze still was not able to perform the job adequately.”

So now, we’ve navigated getting the note, taking it to the company, and theoretically getting an accomodation.

Next there’s actually applying the accomodation, and this is another area where there are struggles. Your accomodation may say you have a flexible schedule, but your immediate supervisor may decide ze wants to see you 6 out of the 8 hours ze’s in the office, which really does a number on the flexibility of your schedule. Especially on something like that, if the accomodation is vague, you’re in for a fight to get it applied in the way you interpreted it. The more precise you can get the language of the accomodation (and for heaven’s sake, get it in writing!), the safer you are from this kind of problem, because then you can bring out your accomodation letter and show it to your boss. Mind you, this is definitely NOT always the case. I’ve worked places where accomodations were regarded as absolute, and if my boss asked me to do something contrary to my accomodation, all I had to say was, “I’m not allowed to lift that much” and I’d get moved to doing something else. Most people, once they have an accomodation letter, will not encounter their bosses trying to…whittle away at their accomodations. However, there are an unfortunate number of people who believe in the ableist notion that accomodations are favoritism, and thus you may get harassed by your boss or your coworkers over the very changes in your environment that make working possible for you. It’s not fair, but frankly the world is often not fair to those of us with disabilities.

The long and short of what I’m trying to say is that getting accomodations is often a big negotiated struggle. It’s not always that way; I know people who have informal, verbal agreements with their supervisors that have worked out well for them (this is particularly true for short-term things, like broken legs and shoulder surgery). But here’s the thing: if your company fails to live up to the agreed upon accomodations, an accomodation that was put together through the process I just described and documented will stand up in court, and be clear on what it means. Verbal agreements do not protect you as well, in part because there is no record of what happened, so whoever you talked to can forget or misremember what was said. As with many other things this law student has said, here again, I have to emphasize…GET IT IN WRITING!

It’s not fair that it’s such a big process to get an accomodation. We shouldn’t have to work so hard to get our employers to work with us, and some are a lot better than this. I’m trying to show what a normal, average process looks like, though, and in my experience, it looks like this.

Out of the whole thing, I find myself very grateful for the cooperative, helpful doctors I’ve had, who have been willing to write for accomodations that have let me work, stay in school, and generally live the life I want. Having your doctor on your side is one of the biggest helps you can have in this process – the other one is having a company that really wants you and is thus willing to work with what you need.

* Specifically, I know that med schools and law schools have successfully survived challenges to their scheduling and attendence policies (respectively). I am not certain why medical schools have survived the challenge, though I suspect that they were able to make the case that the kind of run-around that you go through as a med student is tradition because it’s necessary to prepare you for being a resident. I know the law schools’ attendence policies have survived because it is a requirement set up by the American Bar Association, and ABA accreditation is very important in the legal world.

** I try to use gender-neutral pronouns when I remember, because these kinds of matters affect people of all gender identifications.

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Service dog etiquette (1)

Okay, folks, I’ve been meaning to write this post for almost a month now, and something pissed me off enough today that I’m finally writing it.

Service dog etiquette. I’ll be up-front and tell you that this is more about the ‘why’ than the ‘what’, because the ‘what’ is that damn simple. Seriously. Anyhow, on with the show.

The best of folks who aren’t service dog handlers often make slip-ups, not knowing that it endangers service dog users. Worse are those who don’t care, and I ran into one of those today! For the sake of simplicity, I am not writing about emotional support dogs. I just haven’t thought through how misbehaving around a person with an emotional support dog might affect them, but I would love to know more details.

The thing about a service dog is that in a way, the dog is about equivalent to a small child. They can be unbelievably clever, and can learn an incredible amount of service tasks. Particularly so with my Hudson, whose puppy raiser described him as an ‘electronic device with so many features, you didn’t even know what it could do’. However, for all that cleverness, they don’t have the reasoning ability of an adult human. They get distracted. This is true of even the best of them. Believe it or not, a sneak-pet or a sneak-feed can start unravelling the bond between service dog and handler.

I’m sure you’re thinking, how does my petting a service dog undermine his relationship with his person?

Well, it works in two ways. First off, my service dog works for me because he believes I am the most awesome person in the world and that all good things come from me. All petting, all praise, all toys, all games, his soft fluffy bed, all food, all treats – that all comes from me. Secondly, if someone other than me pets him, he starts thinking…oh, people will pet me. If people will pet me, it’s worth paying attention to people rather than my partner. If he pays attention to people rather than to me, I could have a nasty fall (among other things) – one that could injure both of us. Keep in mind when you read this that the average person who works with a service dog is more likely to be hurt, and hurt badly, by a fall. We tend to have service dogs because there is some kind of physical fragility or injury to us already, after all. When you’re dealing with guide dogs, I think the risk is even greater – a distracted guide dog might walk his person into traffic!

Here’s the part that people really struggle with, though – that applies to ALL forms of distracting him. Don’t talk to him. Don’t call his name. Don’t coo at him. Try not to stare at him. Don’t feed him. For heaven’s sake, don’t let your dog distract him, either! And dog distracting covers a lot – don’t let them sniff my dog, try to play with my dog, annoy my dog, and otherwise interact with him – I know your dog doesn’t know better, but you have to.

The best service dog etiquette suggestion I can give you is this: ignore the dog. I’m completely serious. If you can act like the dog is a cane or a crutch – something you make space for and try not to run into or step on, but nothing you pay any real attention to – you will be responding in the most appropriate way possible.

This kind of extends to how you talk to the service dog’s partners. Don’t get me wrong, I love Hudson dearly. However, it gets kind of annoying when EVERYONE has to ask me about my dog, and what he does, and how long we’ve been together, and tell me their story about their dog who’s just like him except small and brown and white (sadly, not an exaggeration). I love my dog, and dogs in general, but I like being a normal person, too. On bad days, I begin to feel like a zoo animal. People stare, and gee everyone wants to get all touchy-feely with me and my dog and know all about me. And I’ll admit, on those days, when I catch someone staring, I stare straight at their face, waiting for them to notice that I’ve seen them and then I raise my brows as if to ask ‘can I help you?’ On good days, yeah, I can dig that someone isn’t used to seeing a dog around and wants to share their affection for them, or hey they’re so surprised they just don’t know what to do. And yeah, some of the stuff my dog can do is really damn cool, and on good days, I even like showing off some of it. (Even on bad days, hearing someone exclaim over Hudson doing things like pressing door buttons and giving my wallet to cashiers doesn’t bother me. Most people would never even think of using a dog for a quarter of the things Hudson can do for me, and maybe seeing me will get them re-thinking what a service dog is capable of and who might use one.)

I’ll be frank with you – if you’re a stranger, and I’m politely answering your questions about my dog and what he does for me, I’m humoring you and it’s entirely dependant on MY good humor. On a bad day, you’re going to get short answers. Mad? Why? Do I owe you my attention and my time? If the answer was yes, you need to take a good hard think about that. It’s not about politeness, it’s about an expectation that I have an obligation to let you pry into my life. And if you ask me his name, I’m going to lie to you because when people bandy his name around, he knows it and he starts paying attention to that instead of to me. It’s a lot easier to just politely smile and give a false name than it is to explain this whole thing. I have a limited amount of capacity for explaining Service Dog 101, and some days I’m just not up to giving that schpiel to strangers.

You speak to a deaf person, not their interpretor. Yes, their interpretor turns your voice into sign and their signs into voice to translate, but they aren’t actually a part of the conversation.

You don’t move a person in a wheelchair as if they were a cart in the way, nor do you touch their wheelchair without permission any more than you would their person.

It’s the same with my dog. I know, he’s there, he’s got an adorable mug, and he’s kind of hard to ignore – much like an interpretor or a wheelchair (er, well, okay, I don’t know about adorable mugs…) But he’s there to help me, not for the rest of the world. Please, try to remember that the next time you’re around a service dog pair.

(I’ll probably post another time about service dogs and medical professionals, because believe it or not I’ve had a lot of low-level problems with them, to the point where I’m tempted to see if any of the local medical schools will let me come in and talk to their students about how to act around us. There should also be a later post about how my dog is my personal space, theoretically. If they don’t show up, blame the maybe-absence-seizure things.)

Oh, and if you’re curious about the person who pissed me off today? A woman passed me with a small dog on a leash. The dog was utterly out of control, lunging to the end of the leash, no leash manners whatsoever – something I see rather often with smaller dogs because people think there’s no harm. It was also barking its head off. The dog BIT HUDSON’S TAIL! Fortunately, it just came away with a bit of his fur and didn’t scratch his skin at all. The woman didn’t even stop, and when I said ‘Hey, your dog just BIT mine!’ she still didn’t stop. I couldn’t believe it, and my service dog was upset enough that he had an accident on the sidewalk not much later.

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We are not our own best allies.

One of the interesting and difficult things about the disability community is how often it is a community that divides itself. I suppose logically, you can look at there being five groups – the physical disabilities (though there are a variety of sub-catagories here: invisible vs visible, traumatic injury vs chronic illness, so on), emotional disabilities (depression, bipolar, borderline, schizophrenia, etc), learning disabilities (dyslexia, dyspraxia, processing disorders, etc) developmental disorders(which split between physical, cognitive, and those that are a mix) and those who have an overlap between two or more of the aforementioned disabilities.

The difficulty comes in recognizing which types of disability are ‘legitimate’ and deserve to have as normalized a life as possible, and which ones don’t. It also comes in recognizing who counts as part of the disability community and who doesn’t.

It is unfortunately rather common for a member of one of those groups to imply or state that another doesn’t ‘belong’. Someone who has a disability at a consistant level may try to kick out someone with a disability that periodically worsens and improves, on the theory that sometimes they’re not so disabled, so obviously they do not really have a disability. Someone who has a quantifiable, testable disability tells someone whose disability can’t be shown on lab tests that it’s all in their head. A person with a physical disability says someone with an emotional disability ought to ‘just deal with it’. PWDs who have a community of their own – for example, Deaf perople – aren’t ‘really’ part of the disability community as a whole (as if membership in one community means one is not a part of another!). The disability community is only for innocent people, not for people who ‘brought it on themselves’. People say that a learning disorder can be ‘fixed’ with assistive aids and therefore doesn’t count. For that matter, some people will argue that if you have an aid that ‘fixes’ the problem, you haven’t got a disability no matter what the problem is!

I’m sure most (if not all) of this sounds ridiculous to you, but the sad truth is that it happens. I recently watched a message board I was a part of suddenly turn very unwelcoming to members whose disability is some form of mental illness. The worst part of it was watching the moderators jump in…on the not-friendly-to-mental-illness side. It was heartbreaking to see; a place created because the rest of the world doesn’t get it, designed to be supportive to those of us with disabilities, discriminating against its own. Even though it was supposed to be a safe space, the mods were more concerned with not ‘censoring’ people than preventing hurtful, harmful words. Sticks and stones may break my bones, but words can break my heart.

It’s something that happens in the discourse about disabilities very often. It’s something that happens online and in the real world. It’s a discussion that we have one PWD to another, or that we have in communities. Sometimes it’s behind the person or group’s back, and sometimes it’s a more direct slap in the face.

The next time that you think ‘oh, s/he’s faking it’ or ‘if s/he would just do X, they would be fine!’, or worst of all ‘s/he doesn’t really need that accomodation’ stop and ask yourself…what if someone said that about me? What if someone said that about someone I love who has a disability?

The people who are being disenfranchised and ‘kicked out’ of the disability community aren’t the other. They’re PWDs, they’re someone’s friend, mother, brother, or lover. They matter. It matters.

I’m not just saying ‘don’t say these things’. I’m also saying that we should stand up for people. Support people. Create communities inclusively, not exclusively. Extend a hand of friendship, not a fist.

I’ve often called myself a spitfire, and I’m sure that anyone who has read much here can see that in me. I’m not telling you that you need to be the fireball I am. I am telling you that you, as an individual, can make a difference. You matter. You count. You are welcome here.

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Disabilities etiquette

In honor of National Etiquette Week, I’d like to talke a litle bit about disability-related etiquette.

There are two basic rules:
1) Treat a person with a disability like a PERSON
2) Offer assistance, don’t insist

There tend to be two major physical etiquette problems we run into as PWDs. The first is people invading our space. You do not touch a wheelchair, cane, crutch, service dog, or other mobility device. Those are all considered part of the body of the person using them. To touch my crutch is to touch me. To grab the handles of a wheelchair is to grab the person in it. People in wheelchairs and people with service dogs tend to have the greatest problem with this. For some reason, a great many people assume that someone who is in a wheelchair naturally wants to be pushed. For people who self-push, this is highly offensive – it’s like someone suddenly picking you up and carrying you because they don’t think you should be walking around. Even for people who don’t self-push, it’s the height of rudeness – they have someone they want pushing them around, and unless you are that someone, you shouldn’t be touching them unless they ask!

It is unfortunately not uncommon for people to just decide to move someone in a wheelchair because they want to get around them. I can’t tell you the number of stories I’ve heard about people being moved in shops because someone wants to get at the shelves next to them – often exactly where the person in the wheelchair is browsing!

People also invade the space of persons with disabilities. Again, this is the worst when one is in a wheelchair – people stepping right over you, or moving so close their rear is in your face instead of asking you to let them by. Strangely enough, people in wheelchairs are no more fond of having someone’s ass in their face than anyone else is. I also have problems with people walking into me or my crutches. I can’t tell you the number of times I’ve had someone kick my crutch so that it went out from under me, or bump my arm as I’m walking.

Right, so having covered the gross physical violations of space, let’s talk about the rest.

Opening doors: everyone seems to think that opening doors for a person with a disability is enormously helpful. For most of us, it isn’t – it means you’ll be standing in part of the door space, which makes it difficult for a wheelchair to get through. For me, it’s very helpful, but I know that for most people, it isn’t. A person in a wheelchair has a routine on how they get through doorways, and you don’t help them by interrupting that.

Transactions: strangely enough, we don’t like it when we buy something and our change or reciept is handed to someone with us. Whether it’s a person in a ‘chair or a person with crutches, guess what – we like having our credit card handed back to US! If we’re the one making the purchase, please remember who you’re having the transaction with and act like it.

Some language things: it’s okay to say ‘See you later!’ or ‘Do you see what I mean?’ to someone who is blind. They’re idioms, and they aren’t offensive. Now, some of the big faux pas – a person is NEVER ‘confined’ to a wheelchair, they use one. Use person-first language to describe us – a person with a disability (PWD), not a disabled person. A person who is deaf, not a deaf person. So on. It should go without saying, but people do this shit: we are not ‘it’, we hate when you ask someone with us about us instead of asking US, and most of us don’t like being asked ‘what happened?’

Don’t expect us to educate you. We may not be in the mood to. I don’t have any more obligation to educate you about life with a disability or disability theory than a woman has to educate about feminist issues, or a person of color about race issues. I may CHOOSE to – and in fact, that’s a big part of this blog – but I don’t HAVE to. The fact that I answer some questions does not obligate me to answer all questions.

I said it before, but it bears repeating – unless you know me, don’t ask me what happened. I don’t mind an acquaintance asking me about my medical condition, but I do mind a random stranger.

Unless you know it’s acceptable to us, don’t offer to pray for us. I really hate this one, because among other things…if there’s a God, s/he made my genetic condition, so the fact that I am the way I am has to do with this higher power actually making it happen this way.

Don’t treat me like a lesson. I do not exist to make you better understand shit. I exist because I exist, the same as you do. I’m also not disabled because I’m immoral, I’m disabled because I lost the genetic lottery (and most people are disabled because of some chance of fate – being hit by a drunk driver, a genetic problem, an auto-immune issue – it has nothing to do with our morality!)

Don’t try to fix me. Unless I ask you, I don’t want to know about your cousin’s friend’s mom with the same problem who fixed it by . I don’t want suggestions on diet, exercise, or other lifestyle modifications you think will make me all better. And the fact that I don’t want your armchair MD suggestions doesn’t mean I don’t want to get better – it means that I trust my doctors, not Joe Schmoe. If I’m feeling really nice, I may make polite noises when you insist on telling me about your theory, but I’m probably not going to implement it. (having said that, if you personally have a similar disability and found something helped you, I may be interested in listening to that. Also, if I ASK for suggestions, it’s okay to give them!)

The fact that you want to help, and offer to help, does not obligate me to accept that help. I may not want it, and if you’re going to offer to help, you have to be okay with that. If you can’t accept people turning down your offer of help, don’t offer.

Remember, I’m a person with a disability. I’m not a disability. I don’t want to be treated like Ehlers-Danlos Syndrome. I want to be treated like Kali, who happens to have some functional problems with her body. At the end of the day, that’s really what it’s all about – remembering that I am a person, and that my disability is unique. I don’t want everything to be about my disability, and I don’t want you to always be thinking about it. Brilliant Mind has more to do with who I am than Broken Body.

EDITED TO ADD:
When I talk about language, I’m talking about American language. Different phrases are used to describe people in the UK, some of which directly contradict what I’ve said, because of different theories of disability. It’s a long discussion but the short version is that in the UK, a disability is a socially inflicted thing – you have a physical impairment, but it only becomes a disability because people as a whole do not make accomodations.

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