A moment of typical EDS…

We got home from our vacation yesterday.  It really was a nice trip, and my parents and the boyfriend’s parents met for the first time.  They liked each other.

So we get home, and we’re both kind of tired.  The boyfriend brings in all the stuff, including my new-to-me scooter.  My parents brought it out; it belonged to my grandmother, who passed away a little over a year ago.  It’s good to have a mobility device that will allow me to get around more, though this is a bigger, heavier scooter than I would have bought myself.  That’s kind of a mixed blessing – on the one hand, it’s more powerful and can do more (like managing hills and going over grass); on the other hand, I can’t lift the thing myself – we’re considering getting a carrier we can hook up to my car’s tow hitch so that I’ll be able to have it when the boyfriend isn’t around.  Money we don’t really have, but on the other hand, the scooter will be at its most useful when the boyfriend isn’t there to help me.

Anyhow, all of this is kind of besides the point, because I was going to give you a typical moment of having EDS.  It was around 9:30 last night, and the boyfriend and I were both downstairs.  I was relaxing with a novel, he was theoretically surfing the net with his phone but dozing off a fair amount of the time.  I got up to go to the bathroom, and as I started up the stairs…POP!

Yeah, that hurt.  My left knee…something was definitely wrong.  I’d gotten about 5 steps up, so I was kind of stuck.  I called the boyfriend over, and he helped me down the stairs, my arm over his shoulder and him one step below me.  We managed to partially dislocate my left shoulder as I stepped off the last stair, because of the difference between his height and mine.  I needed to get down to the ground to assess the damage to my knee, because the place it popped in wasn’t where it usually does, but I couldn’t bend my left knee without pain or support any weight.  The boyfriend had to catch me under the arms from behind and lay me down, which isn’t as easy as it sounds.

Once I was on the ground, I could definitely tell it wasn’t the usual, and that’s a bad thing.  ‘The usual’, with my knee, is my kneecap partially or completely dislocating, which is painful sure but easy to fix.  This, though…the pop was centered over my patellar ligament.  And oh yeah…I still needed to go to the bathroom.  I tried to sit down and just scoot backwards up the stairs, but our stairs are relatively steep, narrow stairs, which is really hard to get up that way, especially when you don’t have great upper body strength.  In the end, I had the boyfriend fetch my crutches, which at least let me manage my weight in a way that is easier on my upper body.

I’ll tell you, it was one of those times when I was willing to accept the humiliating possibility that I might need a commode on the 1st floor.  I haven’t needed to use a non-toilet ‘potty’ since I was a little kid being dragged along on road trips by my parents when I was old enough not to be in diapers and but young enough not to be able to give much warning before I needed to pee.  (Their solution to that, as I recall, was to use a collapsible kiddie commode type thing)  Well, I haven’t with the exception of the one time with the really, really bad flu that landed me in the ER and almost had me kept inpatient for a few days.  The idea of needing one in my house?  Not a pleasant one.  I doubt the boyfriend would like the idea much either, as he’d be one of the people who had to empty it, as I only have an attendant for 2 hours a day.

I got in with my doctor’s office today (though not my usual doctor) and there’s concern that I may have partially torn either my patellar ligament or my lateral collateral ligament (that’s the one on the outside of the knee, and a typical tackled-from-the-side football injury).  I get an MRI done Friday (yay, let’s put the mildly claustrophobic girl in a tube again!) and we’re really hoping that either I haven’t torn anything and just inflammed stuff or it’s a small enough tear not to need a repair.  Surgery is a definite possibility on my horizon.

I can’t go to work because I can’t get to my office in my scooter (you can only get to about 1/2 of the offices on my floor without going up 3 stairs and down 3 stairs).  It’s just as well, since I should be icing down my knee, and shouldn’t be walking back and forth between the room I work in and the room my supervisor is in, and it’d be mighty inconvenient to keep getting on the scooter, going 20 ft, turning around, driving back 20 ft, and then hopping off the scooter and back to my desk.  Because I’m technically a volunteer intern, I don’t think the ADA requires them to figure out a way to make it work for me.

Yup.  That’s a typical EDS moment.  Most of the time, we look just fine and maybe even are fine, but every now and again, BOOM, it gets you.

It’s also leading to some not-so-good service dog partnership moments.  Hudson isn’t used to me walking with crutches, and moving at a much slower pace than usual, so he’s not pacing me well, which means he gets ahead of me and crosses in front of me and tangles both of us up in his leash.  The really bad part of this is that we’re supposed to be getting re-certified as a team this week, and what they measure is how well you work as a team – and right now, we aren’t!

This, I think, is the real pain in the butt about EDS – the unpredictability of injuries, the severity of random injuries, and the way it interferes in your life.  It happens, you can’t avoid it, you can’t plan for it, and man does it interrupt things you DO have planned!

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Even Dogs Like Vacations

My parents got a little place on the beach last week for them and us.  It was lovely.  The weather was mostly georgous, the ocean was unusually warm most of the time, and the water was almost glassy smooth.  The sand of the beach was soft and fine, and we had a private beach for the 30-some little cottages that belonged to the place we rented from.  Our cottage was about 15 feet from the sea wall, which meant we had a georgous unobstructed view of the water.

Okay, I’ll admit, the set-up wasn’t ideal.  There was no air conditioning, which gave us some big worries.  We thought we might have to get an extra hotel room I could retreat to, but after the first day, the temperature was pretty mild all the time.  Other than that, though, it was georgous.

Like everyone else, service dogs like to get a bit of a vacation.  Hudson had a great time.  He spent most of the week not working, which meant he was either chilling or playing.  On stormy days, we scooted out between storms and let the boy have some time off-leash to run on the beach.

Hudson sniffing a dead horseshoe crab

Hudson did some sniffing.  You have to understand, sniffing is one of Hudson’s favorite things to do.  And on a beach, there are lots and lots of new things to sniff.  Seaweed, dead sea critters, seashells, water, seagrass, sandcastles, so on.

He also got some good runs in!  We had a chance to let him loose between little squalls, and he tore off around the beach.  He was really funny to watch – Hudson’s not the most athletic of dogs, but he sure is enthusiastic about it.

Isn’t he silly looking with his ears up over his head from the last big bound?  I can’t tell you how happy he was to be running – so happy, he forgot that he was supposed to come when he was called!  Naughty beast.  When he didn’t come, he got rounded up by the boyfriend and clipped back on a leash for the walk of shame back to the cottage.  (well, it was only the walk of shame because not coming when he’s called ends his playtime)We all enjoyed the beach, with the lovely breeze, mild weather, warm water, and soft sand.

Hudson also discovered that he likes swimming!  The last time we took him to the beach a year ago, it was somewhere that had about 4 foot surf, which was wayyy too much for my little fuzzbutt.  But the water at our vacation spot this year was clear and glassy, with the very smallest of wavelets where the water hit the sand.  I walked into the water, and he came in willingly up to the middle of his chest.  A little coaxing got him deeper and swimming, and suddenly he was having fun!  He swam around me and out to the boyfriend and back.  We went back out several times, and he seemed to enjoy it a lot.  His method of starting to swim was hilarious – he would get out to about chest-deep, and then give this great LEAP before he starts surging around swimming.  I wish we had pictures or video to show you! Okay, maybe he only liked swimming a little bit, because he had to be coaxed out into the water every time.

Anyhow, I’ll be back to my regular posting next week, but for now, I’m enjoying the last of my vaaaaaacation!

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On the wrong side

Every now and again, you find yourself in a position where you might end up doing actions you’ve spoken against for social justice reasons, either because holding your ground gets too damaging or because it gets too difficult.

I’ve been a member of the fat acceptance movement for going on a year and a half now, and I flirted with it for a substantial time before then.  Like most fat people, I’ve had to struggle with accepting that ‘fat is not bad’ doesn’t just apply to others, it applies to me too.  I’ve slowly gotten more comfortable in my skin, though each time my weight and size increase, I’ve found myself having to go through the same process again.

But now, after a couple of years believing that diets are unhealthy and unhelpful (because I’ve read studies that suggest that), I’m finding myself in a position where my doctor thinks I should lose weight because I have high blood sugar.

Now, high blood sugar is bad news.  There are a couple of things that could be causing it, but regardless of the cause, many people’s blood sugar lowers when they lose significant amounts of weight.

So here I am, faced with two pieces of bad news.  There are 2 different medical conditions that could be causing the issues, one of which may require surgery inside the dura mater (the membrane that surrounds the brain) and the other of which is the precursor to diabetes.  On top of that, I’m likely to find myself stuck on a very severe diet, because milder diets haven’t had any effect towards weight loss for me.  Diabetes is more serious than you’d expect, at first glance.  One of the things that comes with it is poor wound healing/slow healing.  Because of my EDS, I get injured very, very easily, and I already heal slowly.  You add a blood sugar issue and the likelihood of me getting infections in wounds skyrockets.  The likelihood of doing permanent damage, quite possibly without even knowing it, is somewhat astonishing.

Managing it will also be more difficult for me, because of my variety of issues.  I have to be exceptionally careful about what I eat, because of my reflux disorder and my IBS.  (in particular, vegetables end up problems)  I also run into the problem where most ready meals have a great deal of carbs and/or sugar in them, which a person with diabetes is not supposed to have. 

So now, I find myself in the position of having to do something I have advocated against.  So I find myself wondering, am I right to assume that losing weight may actually affect my medical conditions, or is that just what studies paid for by companies that have their fingers in dieting pots have said?  Even if I am right, are the costs of dieting greater than the benefits?

The uncomfortable truth is that I don’t know, and I’m not sure if it will become clear.

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Shaved pooch!

So, Hudson got a new haircut because we’re taking a trip to an area that has fairly high incidence of Lyme disease.  Lyme is tick-borne, so I want to make sure that I can find ticks on him.  The thick, soft, heavy, long coat my boy has is definitely not helpful for that.  Don’t worry, I haven’t cut away his moustache too much!  But man oh man does he look different clipped very short. 

Hudson at the lake, July 2009

It’s not his first time – last summer, we clipped him almost this short.  Here’s a picture of him at the lake near my parents’ “cabin”.  We went both to the lake and the beach during that trip, and let me tell you, this pooch prefers his water STILL!  Even little wavelets disturb his furry little sensibilities.

It surprises me a little how different he looks depending on how long his hair is – he looks so much smaller, so much more poodle-like when he’s clipped down.  You can tell with his hair short that he’s got the narrow hips and narrow shoulders of a poodle instead of the blockier build of a lab; only his head has that big squared look to it, which is what makes his muzzle look ENORMOUS in person.  His brothers and half-brothers all have daintier heads.

This is the first time I’ve clipped his tail so short, though, and boy does it ever look silly!  It starts out what I think of as normal dog tail wideness, but it gets very skinny very quickly- like a poodle’s tail.  I’m so used to Labs and Goldens with their big thick tail.  I can’t decide if it’s cute, but the boyfriend thinks it’s cute.  Well, the boyfriend thinks most things about Hudson are cute, so it’s kind of not a good metric.

The one real bit of bad news was that this very short trim revealed that Hudson’s got a skin problem!  Uh-oh!  We’re due in to the vet a couple days after we get back from our little vacation.  The most likely answer is that he’s got a variety of dandruff called seborrhea, but I’m not sure, because a patch of the affected skin on his tail has lost some hair, which is not typical with seborrhea unless there’s an underlying issue like mites or infection.

My parents are flying out across the country because my dad has a conference and his high school reunion a couple weeks apart on this coast and they decided to make a vacation of it.  It’ll mean 6 hours of driving each way for us (OOF) but it’s near enough to where the boyfriend’s family lives that our parents will get to meet.  I’m mildly nervous, in part because my mother and his are just about polar opposites in temperment but mostly because it’s the first time I’ve ever had my parents meet a significant other’s parents since I was ooh…15 at most.

I don’t know if the place we’re staying has internet available, so you may get radio silence from me until Monday the 25th or thereabouts.

They’re bringing the little nephew, now just over 2 years old.  I don’t know how Hudson will react; he doesn’t have much experience with children and is a bit bewildered by them.  The first meeting between Hudson and the nephew did not go well; Hudson was a little worried by the little guy walking over and then my nephew reached out and grabbed Hudson’s tender nose!  And this back when Hudson was in his super-scaredy mode, before he at least got to trusting me a bit more.  There were a couple of times when we managed to get the nephew to pet Hudson gently, but every incident involved Hudson kind of cringing and clearly wanting to escape.  We’re hoping Hudson won’t remember him and the nephew will make a better impression this time around.  Maybe if we’re lucky we’ll have some adorable little guy and Hudson pictures.  Don’t get your hopes up too high, as I think the most likely answer is more Hudson trying to avoid the boy!

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Buggy and the Beast…

Hudson has, in the past few months, discovered bugs.

Seriously.  In the past few months, it’s like he just realized they exist.  Unlike most dogs, he doesn’t try to eat them…he just waaaaatches them.  And sniffs them.  And watches them.  And sniffs.  And sniffs more.  He’ll occasionally get something cornered and just stand over it and sniff.

It’s a really funny thing to watch.  He’s excited, tail up and ears perked, intent and curious.  With the exception of a couple of smaller bugs that I think he inhaled, he hasn’t harmed any of them.  Well, unless you count alerting the humans who squash them.

After he discovered crawly bugs, he discovered flying bugs.  These were much more difficult – they escaped sniffing so easily, just taking off!  And they were harder to spot.  He spent days trying to figure out how to get close enough to sniff them.

Today, he finally figured out snapping at flies.

…how on earth does a dog make it to past 3 years old without learning to snap at flies?  I mean, I understand that some dogs have no interest in it – one of my parents’ dogs is like that – but Hudson seems to have decided it’s fun now that he’s figured out how to play the game.

(this lighter note is brought to you by a day at work that has left me feeling like my brain has been scrambled by how hard I was thinking)

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Drawing Lines

One of the most disheartening parts of doing social justice work is how often people draw lines, create ‘us and them’, ‘deserving and undeserving’, ‘good and bad’ categories among people who could all theoretically come under one umbrella and work together.

I think in an ideal vision of social justice, I, a fat bisexual feminist crip, would be able to hold hands and work together with fat acceptance folks, GLBTQ folks, feminists, and crips.  I’d also like to be counted as an ally for groups I don’t belong to, like people of color.  In theory, in an ideal world, these groups that represent part of my fight against oppression (and even parts that do not oppress me but that I recognize as oppression that should be fought) would welcome me just as much as they welcome people who do not have intersections of oppression.

The unfortunate truth is that they often do not.  Let’s go through these one by one, shall we?  Now, keep in mind, I am speaking of the mainstream of each movement I mention.  There are figures in each of these movements who try to counter what I’m talking about, and I salute them, but that has not yet bridged the gaps that the mainstream movements have created.

Fat acceptance folks often start drawing lines between ‘good fatties’ – people who eat extremely healthy, normal portioned diets and exercise – and ‘bad fatties’ – people who do not eat as ideally or exercise.  There’s also often a line people draw between fat and ‘too fat’.  Now, as a crip with my particular gathering of disabilities, in hot weather, I cannot exercise beyond an extremely low minimum, and my diet is always somewhat limited by what my GI issues will allow.  My disabilities (and the medications that treat them) are a significant portion of the cause of my weight gain, so even eating well, at best, I level out temporarily until a new medication change screws up my body again.  I have also developed one of the problems we mark as belonging to ‘bad fatties’ – hyperglycemia, also known as prediabetes.  In a perfect world, we could look at people who are fat and say, it does not matter why you are fat (whether it is genetic, or disordered eating, or lack of exercise, or disease, or medication, or disability) or how fat you are, you are still just as valuable a person as a thin person and no one has the right to judge you for your weight.  But we don’t seem to be able to do that, we keep defending how we are not bad fatties, how we are not like ‘them’, the ones who shouldn’t gain the same respect we want for ourselves.

The GLBTQ (which some people now write as GLBTQAI – gay, lesbian, bisexual, trans, queer or questioning, asexual, intersex) movement has I think done a good job in recent years of attempting to start including more membership – hence why it has gone from just ‘gay rights’ to the longer groupings of letters.  They do still tend to represent most strongly the people they believe are their core, ideal group – gays, lesbians, and sometimes bisexuals.  However, this movement tends to cut itself off sharply from people who are poly (that is, people who have relationships that include more than two people).  They also tend to be rather shakey with how well they support their members who are people with disabilities or people of color (though this, as many of these intersections, is often a case of both groups kind of pushing away people who rest in that intersection).  The GLBTQ crowd also tends to try to make a clean break between the GLBTQ movement and sex workers, and rarely supports laws to protect and assist them. 

Next come the feminists.  Now, there are all kinds of issues with feminism cutting people off.  We say women should be able to work, and we now kind of scorn women who don’t, especially if they can’t (as opposed to women who choose to stay home).  We say women are strong and resiliant, just as men are, and we don’t like acknowledging that some of us are weak, some of us do not bounce back (whether that is a disability or a personality does not seem to matter).  We say women are intelligent, and we cut off the women with mental handicaps.  We talk about women’s reproductive rights, but we still treat women who choose not to have children as some sort of tragedy.  There’s the sexual revolution, but what about women who are asexual?  The feminist movement also treats victims of abuse very poorly, as a whole, because as victims they do not typify the self-sufficient image feminists want for women.  I can barely start to talk about the ways that mainstream feminism has sold out women who are lesbian, bisexual, trans, of color, disabled, fat, because it has been done so often and so deeply that it is hard to begin to describe the gap that has been created.  The feminist movement, having become successful, has done exactly what early abolitionists did to early feminists – they have said ‘Wait until we complete our success, and then you too can get what we are getting.’  They have treated the social justice movement as a ladder that only one group may advance at a time, and at that, only the core, ideal members of that group.

Which brings me to the disability rights movement.  Oh, we are a problematic group, I’ll openly admit that.  There are more than a few branches of the disability crowd that only recognize people with physical disabilities, and treat people with psychological or mental disabilities as very much second class citizens within the movement, if they’re included at all.  All three different groups have issues with attacking language that is negative to their particular type of disability, but ignoring language that hurts people with different disabilities.  In fact, we often use language that reflects negatively on other disabilities, even within our own categories (like people who will use ‘blind’ to refer to lack of foresight or insight when they are a wheelchair user).  The disability movement, in addition to often segregating itself (and failing with spectacular frequency people with mental handicaps), also tends to have issues with how it represents its GLBTQ members, members of color, fat members, and to some extent female members.

I’ll be honest, I’m not going to address the issues within the community of color, because I am not of color and haven’t seen the divides from inside.  What I will say is this – my experience with other social justice movements suggests that it is likely that people who do not represent the ideal of this group are shoved off to the side, ignored, and trampled on just like they are within other social justice movements.  I’ve heard things, but this isn’t my community and I really don’t feel like I have enough knowledge or experience to speak of it.

What does this all add up to?

Well, the simplest thing is that we have to look at ALL of the members of our group that we’re supposedly seeking rights for and try to make sure EVERYONE is getting the kind of rights we want for ourselves.  The right to health, safety, equality, basic standards of living, access to who you love, protection under law, and general fair treatment.

The harder thing is that I think we have to start reaching out to other groups.  I think we have to open our hands to groups we are not a part of and say this: we are all, every one of us who is working for social justice, seeking basic human rights that every person should have.  I trust you to say what you see as basic human rights you do not have now, and I will support you in trying to get them.  If we do not treat what others are seeking as basic human rights, they may not grant us the same treatment.  If we do not think of these changes as attempts for complete and true equality, then we may never succeed at getting them.  If we cannot invision our own rights, and the rights of others, that way, then the majority will win when they say ‘you’re asking for special treatment.’

And to me at least, the most basic tenent of social justice work is that we are not seeking special treatment – we are seeking inclusion, an equality of privileges, and being treated just like everyone else.

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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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Blog Carnival Announcement!

Hi folks!

I’ll be hosting the August run of the Disability Blog Carnival!  If you are curious about the blog carnival, the administrator of it is Disability Studies at Temple University.  Their blog can be found here – http://disstud.blogspot.com/

The topic for the August carnival will be ‘Distance’.  Distance is a really interesting concept because it has so many different meanings.  There are so many ways we speak about distance – the space between point A and point B, the space between people, the amount of work that needs to be done to accomplish a goal, the theoretical space between ideas, a measure of improvement (or other change) over time, and a great many more.

Submissions are due by August 18th.

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