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Archive for May, 2009

I’m fat.

This hasn’t been something I’ve talked about here because it’s something I still struggle to accept. Yes, I am fat.

In my teens, I was very slender – a size 4 or so at most. I got up to a 6 for a while, and then the summer before I turned 19, I worked at a Girl Scout summer camp and got down to a teen’s 3-4 again. I was hardbodied and muscular, and very proud of that body.

Well, the next year brought new birth control (depo) and my thyroid output decreasing dramatically. I put on about 35 pounds over the course of a year. I’m sure you can imagine, going from a teen’s 3/4 to a women’s 10 was pretty distressing. I felt very unattractive for a while, and a relationship with my ex-fiance that was falling apart didn’t help matters any. What that came down to, in its harshest terms, is that my ex-fiance cared more about not moving and keeping his life exactly as it was than he did about being with me. That sort of thing makes a very hard realization at any age, but when you’re 19 and it’s the first time you’ve been in a relationship where you truely would do almost anything for them and think you’ll get married, I think it’s especially rough. I think I did more crying than I did studying that year, and considering that I was writing a thesis paper that’s saying something.

I did a lot of work on my body, though – yoga and running mostly. I got my thyroid hormones balanced out again. But the weight stayed. I slimmed down slightly with all that activity, perhaps one size. I didn’t diet, but doing yoga really got me in touch with my body’s needs so I was eating a lot lighter and healthier. My plate was full of fresh vegetables more often than not, and I didn’t eat much in the way of carbs. My sweet tooth was often satisfied by fruit instead of candy or pastries.

It was very hard to be doing all of that work and not see my body slim down at all. However, I started being able to see things about my body that I liked again – the muscular definition in my legs and arms, my shoulders, my curves (I’ve always been a curvy girl, the smallest bust size I’ve had since I became an adult is a DD).

I bounced back up to a 10 pretty quickly when I moved off to grad school and no longer had a thrice-weekly yoga class. I took up dancing, which is probably what kept me from gaining dramatically, as the stress of grad school had me back to eating a lot of junk food.

It was in my second year of grad school that I really came to terms with, and started loving, my body as it was. Of all things, the thing that did it was the mirrored closet doors in the bedrooms of my townhouse. I couldn’t avoid seeing myself – clothed, naked, half dressed, so on. I had to buy a lot of new clothing, because I worked as an office manager and had to be professional every day, and having a lot of good looking clothes that fit well really helped, too. I started to realize hey, I really do look good at this size. The frank admiration of men I dated and male friends helped, too. Being able to see that I was attractive to other people did help me see myself as attractive.

I quit grad school after my second year and took a year off. That year, I was a gym rat – I was at the gym every day to do cardio, did yoga once a week and weights 3 times a week. I stayed exactly the same weight – 138 pounds. But I dropped a size, and I looked and felt good. Well, in my opinion, anyways.

And then there was the disasterous family portraits. We hadn’t had a family portrait shot for several years, so we finally went and had one done. And let me tell you, almost every shot that woman took was awful. We ended up buying the least awful picture. Unfortunately, it happened to make my upper arm look…rather large.

When we took a trip to visit my grandparents and give them the newest family portrait, my grandfather said I looked like I weighed 300 pounds. More than twice my actual weight. He picked the portrait to death – my dad looked like he was staring at nothing/daydreaming, my mother was sneering. While he said nothing about my sister, he has in the past suggested that she could be a model…if she got a boob job and a nose job.

The combination of the bad picture and my grandfather’s harsh critique of the way I looked in it put BIG cracks in my already fragile self-esteem. Combine that with going head over heels for someone who had been very supportive, flirtacious, and I daresay even romantic but in the end decided he wasn’t interested in me, and I was in bad shape.

I started dating a guy (long distance) that I knew was all wrong for me. I’m not going to go into why he wasn’t the right guy, just say that things got as far as they did with him because of the shape my self-esteem was in and the fact that I was rebounding off of the guy I’d lost my heart to.

Things eventually fizzled out; even the need to have someone wasn’t enough to keep me with him. I did start dating pretty quickly, and that was when I met my boyfriend. I’ll admit, I’d been very nervous about starting to date again. Painfully nervous. I was a size 12, which to me felt very large and doughy. I was walking with a cane; it was the first thing I saw about myself, so it was hard for me to concieve of a man who wouldn’t see it that way.

The now-boyfriend who thought I was heart-stoppingly georgous, even though I was now a size 12 and walking with a cane. Thought I had a great ass, and a beautiful face.

My self-esteem slowly improved. Buying myself clothing that fit me, rather than sticking to my too-tight jeans that pushed my hips up into a ‘muffintop’ helped, too. Finding out that a couple of classmates that I considered friends thought I was pretty helped, too. Once again, other people seeing me as attractive started to help.

And then my thyroid slowed down again, throwing another 30 pounds on me. Now a size 16, I’ll admit I cried about it a bit. I was horrified by the bulge of my stomach and the wobbly fat on my thighs. Don’t get me started on what I thought of my butt.

That my boyfriend if anything found me more attractive momentarily shook my faith in his view of my body as beautiful. If fatter was more attractive to him, my brain said, then how can I really be beautiful? He must be wrong. I’m just a…a…blob. A blob who can’t do anything about her weight. Sure, it stabilized, but it didn’t go back DOWN. Fixing my thyroid levels just made it so I stopped gaining. I was still fat.

Once again, it was clothing that FIT that made the difference. I gave in and admitted that my old clothing was unflattering and uncomfortable, and *gulp* started buying size 16 and 1X-2X. You can be sure I cringed at the lables, but when I put the clothing on, it was a different story. Hey, I looked GOOD! I had great curves, I had these great muscular calves, and I still love the line of my neck and shoulder. Sure, finding cute clothes became a lot more difficult, and shopping trips were downright depressing – trying on 20 items might yield nothing, on a good day perhaps 2 items that looked good and 1 that was…okay.

But I DO look good at size 16. I am attractive, I am beautiful.

Anyone that tells you it’s all about inner beauty? Screw them. Forget them. Being fat does not mean you aren’t beautiful. It means that you have to learn to see that you ARE beautiful. Shaking that cultural training that anything above a size 6 is fat and ugly is hard. Truely, deeply hard.

I know that being a size 16, I have an easier time of it than someone who is a size 26 or 30. I do believe, however, that we can learn to see our bodies as beautiful, by not hiding from them. Seeing yourself naked, half dressed, dressed in clothing that fits well – that is how you learn to see yourself as beautiful. Looking for the features about your body that you love – that is how you see yourself as beautiful. And sometimes it takes trying to see yourself as someone who is attracted to you sees you. It’s okay to ask them – tell me what you love about my body. And then look in a mirror and let those words play back, so you can see your amazing ass, your beautiful hands, your killer calves, your rack of DOOM, your dazzling smile, your laughing eyes, your georgous hair, your beautiful self.

So dress yourself in something that makes you feel good and remember, when idiots insult you…they are idiots. You are beautiful.

Really.

You are beautiful.

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…or at least, it feels that way.

I sort of earned this one. The other day, as I was driving around town, I spotted a bunch of chairs set out for people to take. Well, wouldn’t you know it, the only major piece of furniture the boyfriend and I were missing for the new house was chairs for the diningroom!

So I pulled over. There were several people grabbing up chairs. I sat on the different styles there to see which was the least uncomfortable for me, and then madly dashed about finding 6 of the same style and finish. I ended up carrying them to the car two at a time in order to make sure no one carried them off (which almost happened, twice).

These are not by any means light-weight chairs. They are solid hardwood and heavily built. As far as owning them goes, this is great – probably oak, nice looking, built to last, wonderful. But as far as yours truely carrying them…ugh, that’s a whole other matter.

This was…a most unwise thing to do. You see, my back has been contemplating moving from a state of cold war level tension into open revolt. I’ve got a 10 year history of back injuries, starting with a car accident that didn’t bother anyone else but sent me to three months of physical therapy.

I’ll admit, the whole story on how this was foolish gets worse.

You see, on my way out to the errand that sent me to that part of town, I had checked my mail. And in the mail? My results from an MRI of my lower back…which showed two mildly herniated discs in my lumbar spine.

I read it, but it didn’t really sink in until yesterday evening. Which is about when I really started to feel the impact of my oh-so-clever furniture moving.

I know the herniated discs don’t explain everything that’s wrong, but there’s some level of relief at having an answer as to why my back has been so incredibly bad for the past 6 months. I don’t know, at this point, what we’re going to do about it. I also suspect I have herniated discs in other places – the pain where I now know I have a herniated disc in my lower back is very similar to the pain in the middle of my spine, and at the base of my neck is suspicious as well.

For that matter, I need to have vertical MRIs done to show the curvature and possible subluxations (partial dislocations) in my back.

In people with EDS, it’s not uncommon for joints to slip back into the ‘correct’ alignment if you set it up so that it’s easy for them to. This means that a traditional, horizontal MRI aligns the spine more often than not, and can do the same for shoulders, the sacroiliac joint, and others. So the fact that my horizontal MRIs show my back in good alignment doesn’t necessarily mean much.

Unfortunately, like so many other things in my world, that’s asking for slightly non-traditional treatment. I guess I’ll start that fight once we figure out what we’re doing with the information we already have.

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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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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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In honor of Mother’s Day (albiet somewhat late), this is a post about what happens to your family relationships when you’re a PWD.

Now, there’s an important distinction to make here – people who have always had a disability or chronic illness and people whose illness/disability showed up in their adult years.

I’ll admit, I’m limited in how much I can speak about a disability from a young age. I can only say what I’ve observed. PWDs who became ill/disabled young often have really difficult dynamics, which get worse around the time they become adults. Families that are either too helpful, or completely unsupportive, or a confusing mix of the two – ultrasupportive at times, and unhelpful at others. As PWDs become adults, they often find themselves in a position where their family does not want to admit they have grown up – parents who insist on coming to doctor’s appointments (and even if they give in on this one, demand to know everything that happened), panic when their child with a disability wants to move out and have a ‘real life’, call constantly to make sure their child is following their treatment plan, etc.

As for myself, my genetic condition became disabling (probably because of the addition of a secondary illness, fibromyalgia) as I moved across the country from all of my family. As a result, my family is very much not involved in my day-to-day life, and really not inquisitive about my medical care. My mother has called me her ‘secret child’ – my sister tells my mother everything, but I really never have. It’s not that I shut my mother out, just that I am a more private person than my sister. Also, I suspect a lot of the way my sister talks to my mother is to get what she wants.

So we talk sometimes about my disability, usually when the medical bills are piling up frighteningly high, or I’m scared about the way the future looks for me, or going through piles of testing (which usually doesn’t show much).

The only time my family really interacts with my disability is when I fly over to visit, which has happened three times now. It’s an odd mix of reactions, to be perfectly frank.

The first visit, the thing I was having the most trouble with was my hands – so my mother changed the doorknobs on every interior door that I’d need to lever-style handles, which were easier for me as I just needed to figure out a way to push them down. They don’t seem to mind getting wheelchairs for me at places like amusement parks, or letting me sit somewhere while they wait in line and then just hop in when they’re near the front. They don’t make a fuss over the fact that I sleep longer, and take naps. They more or less get that I get a few hours of being ‘up’ during the day, and other than that, I must stay more relaxed and not be up and about, out and doing.

However, the emotional side of things is much trickier for them. You see, all of my life, they’ve called me a clutz or ‘fragile’ because of how often I get injured. It was, for me, an intense sense of vindication to be told that no, the injuries I had gotten all my life were emphatically NOT my fault and were related to this genetic condition. I’ll admit, I still harbor some resentment over the way they responded to my injuries.

There’s also this…I don’t know how to explain it. They don’t get, and don’t seem to want to get, what it is like to live as a person with a disability. The clearest example of this to me was a discussion we had in the car one day. My sister was pregnant at the time, and complaining about how people invaded her personal space to pat her belly. I mean, who would ask to pet or rub the belly of a non-pregnant person? Naturally, this made her very uncomfortable – particularly the people who just touched without asking. I compared it to random strangers on the subway asking about my medical history, and how that felt like a tremendous invasion of my privacy. I mentioned that when I was in a bad mood and people asked why I walked with a cane, I would tell them things like ‘it’s good for whacking annoying people’.

My mother’s response that I had a bad attitude. I should be glad that people are asking these invasive questions, because at least then they aren’t ignoring me. According to the PWDs my mother knows, being ignored was one of the worst parts of dealing with people when you’re disabled. And if they’re asking about your illness, obviously they care.

Now, I’ll be the first to say it, being ignored sucks. But that doesn’t make complete strangers asking personal questions (and feeling entitled to the information) any less unpleasant. This false dilemma – that either you will be ignored or people will pry – is terrible, and it hurt me deeply that my mother thought that my desire to have the same kind of privacy normal people get. Besides that…when random strangers ask why you walk with a cane, it isn’t that they care. It’s that they’re nosey and curious and gee you’re not quite normal so you have an obligation to explain to them why.

My father really just…doesn’t deal with it, and tends to be very quiet about it. My uncle and his wife have wanted to know what’s going on and how I’m doing, but no one else in the family inquires. My sister gets pissed if my disability causes me to get attention that she believes should rightfully be hers.

In many ways, my disability feels like a stranger in the family, and not a welcome one. Oh, they do things here and there to accomodate it. The physical side of things, they accept and work around, but the emotional side of things, they do not even want to acknowledge. And in general, no one wants to talk about it. My disability is something to deal with as little as possible – something I had not expected, and have been hurt by.

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I’ll preface this by saying this: I know I’ve got a rare, frequently misunderstood, generally unknown condition. My own GP, who is in general a smart woman, thought I couldn’t have it because I didn’t have ‘the look’ (there’s a frequently seen appearance with Vascular type, but even then it isn’t universal, and it doesn’t apply to any other types). It doesn’t mean much to most people, so much so that whenever I go to a new doctor, I bring a packet of articles and information about how EDS works so that they know what they’re dealing with. (I’m sure you can imagine, as there is connective tissue in every part of the body, I’ve seen a lot of new doctors since this became a suspicion a year ago)

This post isn’t about doctors, though, it’s about one-size-fits-all approaches.

Look, they don’t work. It’s like those ‘one size fits most’ pieces of clothing – sure, they fit ‘average’ sizes, but someone skinny or heavy just won’t fit into them. Even the ‘average’ sizes aren’t fitted well.

To give you a great example: trying to order a piece of equipment my occupational therapist, my sleep doctor, and I decided I needed.

So the item in question is a low pressure mattress, aka a low resistance or low resist mattress. In a queen size no less, because I need to be able to sprawl when I don’t feel well to take even more pressure off the joints, and because I have flailing screaming… things… that are probably night terrors, though I don’t have an official diagnosis as I did not have one of these during the sleep study. If I’m on a small bed and one of those hits, I will invariably hurt myself. A larger bed presents lower risks to everyone but the boyfriend, who will invariably get clobbered. (The trouble with being a heavy sleeper with a girlfriend who has night terrors.)

When I called them, they said yes, they would order it for me.

When I arrived to actually give them the prescription and get the order started, they said ‘Oh! We can’t order that for you, you’re so young. You don’t have pressure sores or ulcers, do you?’

I said ‘No, I have a connective tissue disorder. I dislocate joints in my sleep. I need a low resist mattress to make this happen less.’

They said, ‘You just need a pad to go on top of your mattress.’

Now, if that was all I needed, why on earth do you think my doctor would’ve written a prescription for this? I understand that this isn’t the ‘typical’ reason for needing one of these. I also know that a pad won’t work – I’ve already got two on top of my mattress, and all that does is make it so that more often than not, I can sleep. It doesn’t stop me from dislocating my shoulder or subluxing my hip, not to mention what I do to my hands and wrists.

After several minutes of arguing with them, and with their superior, they finally said they would take down my information and start the process, with actually calling companies and finding out if my insurance will cover this without a fight happening on Monday.

I’m fairly sure I’ll have to fight my insurance on this. Won’t be the first time. Any time I need an item that is not 100% traditional, I have to fight them. My knee braces? Covered. Inserts for my shoes to keep me from spraining my ankles? No way. Massive, custom made braces to keep me from spraining my ankles? Covered. My crutches took weeks of fighting to get covered, not the least of which was with the medical equipment company! I can’t get 2 series of physical therapy for similar injuries to the same body part, but I’ve had more MRIs and CT scans in the past year and a half than the average person has in their entire life.

So here we are – a not uncommon piece of medical equipment that I’m told I don’t need because people can only imagine it being used for one thing. Great.

One of the most frustrating things to deal with, as a person with an unusual sort of disability, is the fact that most people can’t get why I want or need what I do.

There was a bit of a to-do when I moved into my school-owned graduate housing apartment, because the carpeting had not been laid yet. They suggested putting my furniture somewhere in storage for a few days and then moving it in, even though I came on my approved move in date. Oh no, no, no. I cannot ask people for help too often or I burn them out, I am NOT making all of my moving assistants come out another day, you need to make this work. (in the end, they moved the furniture as they put the carpet in)

I’ve been told that as I do not have wheels, I do not need an elevator. Um, hi…joint problems + stairs = recipe for dangerous accidents. Especially if they’re crowded stairs.

I’ve been told that as my paperwork wasn’t filed right, they didn’t need to give me a first floor apartment.

I’ve had people get mad at me because I have a key to the accessible back door of my main building at school, but occasionally come in the front entrance (which has stairs). Sometimes avoiding walking the extra distance to the accessible door at the back of the building is more important than not walking up stairs.

I can get all kinds of accomodations for school, including things like note takers and increased time for exams. But a reduced schedule? Oh no, I’ve got to be able to get through the same number of units as any part time student, and my allowed graduation date is the same, with no extention to it.

I’ve had a doctor insist that the exercises I told him were beyond my capability were completely appropriate and harmless. Because he was a tremendously insistant ass, I did them. After all, he’s the one with an MD and there’s a chance I was wrong. I only partially dislocated 2 joints, not that I’m doing the exercises to STOP problems like that or that each time that happens causes more damage.

The reason we don’t custom-make many things anymore is because it takes less labor to do it this way. In short, non-custom is cheaper. We live in a society where the bottom line is the big concern. (Just look at the phrase ‘the bottom line’ – we use it to mean ‘the important point’!) In a society where the bottom line is the highest priority, we can’t take the time to actually do things in a way that values the individual or the differences between individuals. This impact this has on your life gets heavier the farther from the ‘norm’ you are.

When you’re fat, it’s harder to find attractive clothing and it’s generally more expensive. (I don’t consider fat a pejorative, just the most efficient way to describe size. Please see http://www.kateharding.net, http://www.therotund.com, and/or http://www.fatshionista.com)

When you’re disabled, it’s harder to get basic necessary access and services. The more unusual the disability, the worse this becomes in some ways.

When you’re not walking (wheelchair or mobility scooter), it’s harder to do even basic things like shop – places are not designed for non-standing folks and people are damn rude.

When you’re not neurotypical, it’s harder to get people to listen and understand, and to get people to make themselves understood to you.

When your neuro-chemicals aren’t balanced, it’s harder to get people to not dismiss what you’re saying as your mental illness speaking.

When your experience is not ‘the norm’, it’s harder to get validation and the treatment a person who is valued recieves. I’m sure many of you can add on to that list of ‘when you’re not…’ and please DO! I want to be able to add YOUR experience to my view of how we are failed by the one-size-fits-all approach.

Part of the beauty of humanity is the varience: the fact that we aren’t all one size, one color, one height, one weight, one shape, one ethnicity, one religion, one set of abilities, one opinion, one set of tastes, one style, one outlook. To really see our value as people, we have to value other people, whether or not they are the same as we are in any of these categories. It is our diversity that makes us amazing.

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Having spoken to many persons with disabilities, and living as one myself, I can tell you that one of the most appalling things about having a disability is how easily and often we are dehumanized. A while back, I came across a post that implied that children with disabilities were a problem, and when I called the writer on what she had said, she did the most common thing people do when called out: she denied that she had done what I said.

Not only do we get de-humanized, the very people who do it deny that what they say is de-humanizing, and often blame us for being ‘too sensitive’ or ‘overreacting’.

It’s a dialog about privilege. When someone who is in a minority calls you on exercising a privilege, or using the language of privilege, I know it’s difficult, but try not to have that instinctive knee-jerk ‘I did not! You’re wrong!’

Why? Because as the people without that privilege, we’ve got a bit better view on what the privilege looks like. We live without it, and we can see the gap between your lives, your words, and ours.

What can you do to avoid this kind of privileged language?

– Don’t describe someone who uses a wheelchair as ‘confined’ to their chair.
– Don’t describe us as a problem, rather than for example access issues as problems.
– Don’t talk to the people with us instead of us. Worst of all if it’s about us.
– Don’t use pity. We are not the poor little crippled people. We are people with disabilities, and we are just as human as you are.
– Use person-first language. A person who is blind, not a blind person. A person with a disability, not a disabled person.
– Don’t use pejorative language related to disabilities. Don’t call people lame, spaz, retard, etc.
– Don’t tell us that what we say happened couldn’t be real. Yes, people do awful shit to us sometimes – taking us away from the people who are helping us, treating us as non-persons, telling us that if we were good believers in (whatever faith) we would be cured, so on. You may not be able to wrap your head around how a person could possibly do something so wrong-headed, but telling us that our experiences aren’t real doesn’t change the fact that they do. Don’t say ‘That couldn’t have happened!’, say ‘How could they do that?!’ Both express disbelief over what someone did, but the latter accepts that we wouldn’t make this shit up.
– Don’t treat us as non-persons.
– Don’t ask disabled strangers about their medical history. That’s pretty damn personal, and if you get one of us with some sass, we may ask about something equally personal – your sexlife, your last doctor’s visit, what you confessed the last time you saw your priest.
– Don’t erase us. Cutting PWDs out of the discussion doesn’t fix the problems we try to talk about, it’s just a way of saying ‘the way I and other people treat you is not my problem.’
– Do ask us to repeat ourselves if you couldn’t understand what we said! It’s fine to acknowledge that you’re having trouble with the way we’re speaking, just do it nicely.
– Don’t assume that a physical disability = a mental disability. We’ve got just as much range in intelligence as the rest of the world – from people who have trouble with basic life functions to geniuses.
– Don’t touch a person’s mobility aids – that’s part of their body, and to do so is very rude.
– Don’t do things like pat a person in a wheelchair in the head or shoulders. You wouldn’t do that to someone who was standing, why do that to them?
– Don’t move a person in a wheelchair unless THEY ask you to, and don’t use them as a cart.
– If you’re talking about me for some reason, use my name, or him/her pronouns – I am NOT an ‘it’!
– Respect the language we use to describe ourselves. Some PWDs like words like ‘crip’ or ‘gimp’, some don’t. The fact that we use this language to describe ourselves doesn’t always mean it’s okay for you to do it, much like persons of color who describe themselves as ‘niggas’ – it’s often not at all acceptable for a white person to describe them that way.

This is a very, very incomplete list, but the gist of it is this – don’t negate PWDs. We’re real, we have feelings, and we want to be treated like everyone else. Don’t make assumptions about us. Don’t act like we’re less-than-human, or less than you.

Much like a discussion of gender or racism, a discussion about disabilities, or ableism, is not a discussion about YOU. It’s a discussion about our experience. If you come into a discussion like that, don’t try to make it about you, and don’t negate our experiences by talking about your friend with a disability who doesn’t mind what we’re talking about. Listen. If you want to ask a question that is pertinent to the discussion, be aware that the person speaking has no obligation to educate you.

I apologize if this was a little bit rant-like, but I really wanted to try to talk about the ways that privilege affects our lives. If my references to the conversations about race offended, I sincerely apologize and hope you’ll be willing to educate me if my privilege is showing.
~Kali

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