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Archive for December, 2009

In keeping with the spirit of the season, here’s a couple of funny things that happened to us this holiday season:

On our flight over, as we were getting ready to leave the gate, a flight attendant stopped and asked if she could put my bag up in the overhead compartment. My furry black bag. You got it – she offered to put my service dog in the overhead compartment! (Don’t worry we just got a good laugh out of it)

My shy-guy Hudson has finally found his match in my boyfriend’s brother’s dog. Lola is easily frightened and kind of aloof. Her body language around other dogs almost exactly matches his – kind of confused, sometimes wanting to play, sometimes just wanting the other dog to go away. These two goofy things decided they liked each other yesterday, and today cemented that liking. They spent most of this afternoon alternating between sniffing and tearing around their back yard like their tails were on fire.

And finally, Hudson has picked up a new hobby: pooping on snow. He poops here 3-4 times more often than he did at home. I’m convinced that he deliberately does multiple small poops so that he gets to do it more often. He takes great joy in finding the most untrampled, pure snow he can find and either pooping or peeing on it.

Hope you’re all having wonderful holidays, folks! Stay warm, stay dry, and have a good time!

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So, here we are everyone, Christmas evening.

The boyfriend’s parents live farther north than we do and correspondingly colder.

It’s been a strange holiday for me. You see, I have always known that when I visit my parents’ house, I intensely enjoy the climate, the culture, and my cosmopolitan old haunts. However, this year, I realized that the atmosphere stresses me right the fuck out.

Part of the reason I realized it is because the boyfriend and I visited my parents for Christmas last year, and over the summer, and then we came here for Christmas this year.

Contrasting this Christmas against last Christmas is…ridiculous.

Yes, last year we had beautiful climate and theme parks and beaches and 70 degree weather. We had short sleeves and sunshine and everywhere I’ve known all my life.

But last year was also stress, explaining to relatives what’s going on with my health, reminding people to be gentle with me, fighting (and trying not to fight) with my sister, being in the house with a 6-month old, the stress of the fact that none of my father’s family likes each other, oh god nothing is wrapped and the house is a mess and nothing is ready, and the fact that with the exception of my boyfriend, I was everyone’s last priority. (To be fair, my parents’ house at Christmas is not pure misery – there are traditions I love, and I am very very fond of my mother’s side of the family.)

This year, it’s snow – sure, less than a foot. Temperatures that they say are mild but which to me are incredibly bitter cold. Heavy warm clothing and cold feet and my god how did it get so cold just going to the bathroom?!

This summer was the first introduction of my service dog to my family, and it was frankly awful – my family letting their dog bully him, and not keeping the year-old baby off of him, and just generally making him stressed out and unhappy, which in turn makes ME stressed out and unhappy. And we had a lot of me being low on everyone’s priority list, my sister leaving horrible messes in places we had to use, and just…well, generally it was stressful and I asked my boyfriend why I thought it was a good idea to go out, why I thought I wanted to go out to see them.

But emotionally, this year has been so much easier. The only gifts this year were given because the givers wanted to – we did big goofy stockings full of silly things that everyone seemed to like a lot. His family understands my disability better than my own does. And this Christmas…there was no rush to wrap everything, no panic over food not being ready, no rush to clean away months of clutter, no push to take care of things I wasn’t responsible for. Their dogs have been very well behaved and well controlled. And finally, unlike my father’s family, my boyfriend’s family likes each other. They tease like crazy, and there’s a lot of laughter…and a lot of love.

…while I miss the warm and the cities and spaces of my home like mad, I finally am realizing that maybe I don’t miss my family so much at all. Or maybe what I’m realizing is that family isn’t about blood.

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Often when people think of living with a disability, they say things like ‘I can’t imagine it’ or ‘I couldn’t do it’ (also known as ‘I would kill myself’).

There’s a reason people who are able-bodied come to this conclusion. It’s because they only think about what can be measured. About what is lost.

My life is not the degrees my elbows and knees (and other joints) hyperextend. It is not the days I am not allowed to drive. It is not the weight limit on what I can lift. It is not the pills I take every day. It is not the tally of strains, sprains, dislocations, and subluxations. It is not the distance across the bruise on my shin, nor the size of the atrophic scars on my stomach.

My life is not the number of hours I walked around shopping today. It is not the count of rows I crochetted on the toy elephant I am making for my nephew. It is not how long it takes to get Hudson into his harness. It is not the number of minutes I spent curled up against my boyfriend’s chest.

Life is immeasurable. To try to reduce it to quantifiable things is to forget that life is in our experiences, in our emotions. If you count the minutes I spent playing with my service dog but do not count the laughter and the bonding, the joy of just goofing off together, you miss the core of what it is to play. The number of rows I crochet on the stuffed elephant for my nephew doesn’t tell you much, but that doesn’t tell you that I am making this elephant because last year, I made him a stuffed lion that is one of his favorite toys – yes, it’s a ridiculous amount of work, but there is a special kind of…of…I don’t know how to describe it, glow? to seeing someone who you love adoring something you made. Saying I spent time curled up with my boyfriend doesn’t tell you how loved that makes me feel.

My life is not a tragedy. Disability is not a tragedy. Perhaps you can’t imagine living my life, but keep this in mind – you can’t imagine it because it’s different, not because it’s terrible.

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There are categories of people whose bodies we label as public property. Bodies we can comment on, talk about, harass, own, label, criticize, and categorize. Bodies that are no longer people, just…bodies.

How often have we heard commentary on women gaining or losing weight? Aging? Getting pregnant? That’s this kind of public body issue. Why do we feel like it’s not just acceptable but appropriate? Complimentary to tell a woman that you’ve noticed she’s slimmed down, insulting to say she’s put on a little weight, but still within rights to comment on!

Disability makes a body ‘public’, too. Questions from strangers about why you have your mobility aids. Comments (often quite rude) about why you’re using the disabled seat on public transit or the disabled parking spots. Don’t get me started on what they say about people using electric wheelchairs or scooters. People feel like they have a right to assess whether your disability is real or if you’re a ‘faker’, with no more information than what they can see when they look at you.

And then there’s size/weight. I’m not sure how many of you are familiar with the recent fracas with Lincoln University. They have added a new ‘fitness walking and conditioning’ class that is required for anyone with a BMI of over 30.* Lots of things to say about this – firstly, BMI is an inherently flawed measure. It was never intended to be a measure of health, only to show where the average ratio of weight to height falls. That’s it. And it only showed what average was at that point. The equation for BMI dates back to the 19th century – back far enough that for people who were poor, periods of starvation/undernourishment when crops weren’t good were a regular part of life. That kind of skews your averages, don’t you think?

Anyhow, enough about the history. So what we have is a measure that shows what the average weight to height ratio for men was in the 1800s. Sounds pretty irrelevant to me, what do you think?

Further, BMI doesn’t differentiate between muscle mass and fat. Serious athletes tend to test with very high BMIs even though they are in almost impossibly good shape because all it assesses is weight-to-height ratio.

Okay, so we’ve talked about how BMI is useless. Now let’s talk about how this measure at Lincoln University is a bad idea.

Now, let’s get something out before I say anything else – I think encouraging people to exercise and eat healthy is a good idea. However, I think that ACROSS THE BOARD. Some of the most unhealthy people I know happen to have metabolisms that keep them skinny. The fact that they are skinny does not make their lack of exercise and their poor diet any better!

However, the way this is being done at Lincoln University – targetting people who are fat – is discriminatory. We’ve had studies show that people don’t actually have long-term control over their weight. http://www.nytimes.com/2007/05/08/health/08iht-snfat.5614611.html?_r=1 Our bodies change their energy use to reflect the amount of energy we’re taking in, leaving us with bodies about the same size whether we eat more or eat less. https://content.nejm.org/cgi/content/full/332/10/621

Dieting, we’ve seen, works in the short term but every study I’ve seen suggests that the vast majority of people who diet or make ‘lifestyle changes’ find themselves as heavy or heavier 5 years later. And that’s people who stuck with the change, not people who tried to just diet a bunch of weight off and go back to their old eating habits.

Furthermore, dieting is HARMFUL. A metastudy* by UCLA came to the conclusion that “The benefits of dieting are simply too small and the potential harms of dieting are too large for it to be recommended as a safe and effective treatment for obesity.” The study also noted that weight cycling – also known as the yo-yo effect of dieting – increases all cause mortality. I wonder if perhaps this increase is part of why we have this idea that fat people have higher rates of certain diseases. Among other things, this study connected weight cycling with increased rates of diabetes, cardiovascular disease, and strokes – all diseases we say are caused by being fatter. Maybe they’re caused by being past dieters more often than they’re caused by body size! (http://mann.bol.ucla.edu/files/Diets_don’t_work.pdf)

Okay, so I’ve talked a lot of the problems with the actual requirements…but what about the media coverage of the issue?

When the articles include pictures, they pull the usual trick of dehumanizing fat people. They are either turned away from the camera or their heads are not included in the picture. Often, they are ‘artfully’ out of focus. Also, they’re a lot bigger than the minimum size a person has to be to get forced into this new class at Lincoln University. A BMI of 30 is a lot smaller than most people think. For example, I was at a BMI of 30 not long ago. I wore a women’s size large. Maybe an XL if it was cut on the small side. In numerical sizes, I wore between a 14 and a 16. The people shown in the pictures I have seen so far are probably 8 numerical sizes larger, if not more.

That’s part of the media’s obesity craze, you know. They represent obesity as being UNBELIEVABLY ENORMOUS when really the medical definition of obesity includes people we’d think of as just being not skinny.

Yeah, according to BMI, I’m about halfway between ‘obese’ and ‘morbidly obese’. That’s a clothing size 18, for those of you who’re curious. Between an XL and an XXL. I also exercise daily and try to maintain good eating habits.

BMI is just a number. It tells you little more about health than age describes disability. At extremes, perhaps it tells us something, but in ranges just outside of ‘average’, it’s pretty damn useless.

Here’s the real twist I want to suggest. Even if BMI was an accurate measure of health, or we used an accurate measure of health to base our judgement on, it be not right to discriminate against people because of their bodies.

So here’s my question to you: why do we let our culture tell us that people have a right to judge the bodies of women, of PWDs, of fat people? Are you going to do anything about it?

*The Lincoln University faculty meeting minutes on their website confirm the existence of this new requirement:
The HPR 103 requirement can be satisfied/completed by doing any one of the following ways:
(a) Test out (earned a BMI of less than 30)
(b) Pass the “old” HPR 102: Lifetime Sports class
(c) Pass HPR 103: Fitness for Life
(d) Pass an approved “physical activity course” at another college (must be a transfer student to LU)

* A metastudy is a study that reviews the results of many other studies to see if conclusions can be drawn from the whole

…and yes, I’m aware I’m leaving out categories of people whose bodies are treated as public – people of color, homeless persons, politicians, GLBTQ folks (expecially trans people), and celebrities spring to mind. I’m limited here by the experiences I can speak from – a woman who is disabled and fat. I haven’t the ability to speak for those experiences I do not know, and I hope you will forgive me for not including them.

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Mother, Mother

The holidays always get us thinking of family, don’t they?

One of the things that has suffered badly since I became disabled is my relationship with my mother.

It’s frustrating in a way, because most of the problems my friends who are young and disabled have with their parents, I don’t have. Mom doesn’t try to protect me from everything. Mom doesn’t ignore my disability and/or the needs that spring from it. Mom doesn’t make fun of my disability. Mom doesn’t lament over the future I won’t have because of it. She doesn’t try to convince me I can do everything and anything, either. I don’t get pushed to do things I can’t. She does little things that help accomodate me – changing the doorknobs to levers instead of those fiddly round ones, making sure I had a bedroom on the main floor of their ‘cabin’ instead of one of the harder to get to ones, asking if I need a different kind of showerhead, etc.

But what she doesn’t get is the emotional side of things.

A few years ago, I’d been sick enough to consider myself disabled for about 4 months and my sister was pregnant. I was home for the holidays. Mom and I went out and bought a new cane because mine had gotten left on a bus and she changed the doorknobs so I could get into the bathrooms and my bedroom. I thought things were going pretty well; my family didn’t give me a hard time about needing more sleep than before, and not being able to do much.

And then it happened. We were in the car one day, and my sister griped about people wanting to rub her pregnant belly – strangers, her landlady, all kinds of people. I said I sympathized, it’s really frustrating when people invade your privacy. Like they do when complete strangers on public transportation ask me about my disability.

My mother then said that I had a very bad attitude and that I should be glad people weren’t just ignoring me, like her coworker in a wheelchair said happens to him.

I tried to explain – it’s my privacy, what are people doing asking about my medical history? Why do they think I should tell them what’s wrong and worse yet they expect me to smile nicely and thank them when they offer yet one more useless ‘try this!’ idea.

No, no, I just have a bad attitude. It’s just people caring. What’s wrong with people trying to express caring?

That’s the thing. They aren’t caring. They’re being nosey curious people poking at the gimp girl with her canes. (then canes, later crutches, now service dog)

Yup, sometimes when people ask me why I have a cane, I tell them that it’s good for whacking annoying people.

Not because I do whack people with it, but because…I didn’t want to discuss with people this strange ailment that was then undiagnosed and a complete mystery to my doctors. I didn’t want another round of suggestions of herbs or vitamins or exercises or healers or doctors or prayer. I had good doctors. We were running tests. If something herbal would’ve solved my problems, my young open-minded GP would have recommended it in a heartbeat. And the last thing I wanted was another person with pitying eyes telling me they’d pray for me.

I’m sure you can imagine what a betrayal it felt like. My mother, who I have used as a sounding board and rational ear for most of my life…on disability issues, is one of Them. The able-bodied people who recognize only the most blatent forms of discrimination as ableism. I’ve tried talking about other disability related issues with her, and it’s all been the same result – I’m over-reacting, it isn’t that bad, why is that a problem?

In the end, I’ve given up talking about what it’s like to be a person with a disability with her because she is certain she already knows, and thus she will not listen to what it’s like to be in my shoes.

Because obviously, I wouldn’t know what it’s like to be in my shoes.

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