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Archive for October, 2009

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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Today marks probable-absence seizure #3.

I was getting set up to check my email, as this professor has cancelled last minute before. I sent a text to my boyfriend, and then…somewhere between 20 and 25 minutes went by.

I emailed the dean and the disability liason about what’s going on, as I figure at this point I need any help I can get and I’m not sure how to tell my professors what’s going on. See, I can deal with the regular disability stuff without a problem, but this? I don’t want to sound like I’m making excuses.

Somehow ‘I may look like I’m daydreaming, but I’m not. After an event, I am so exhausted I can’t even count out ten seconds, much less take public transit to school and manage a freaked out service dog and attend classes that are incredibly cerebral. And oh yeah, the public transit workers are threatening to strike starting Friday. Even if they’re around, I can only wake up so early because of my other disabilities and what they do to my sleep cycle. Ooh, and if that’s not enough, hey, I fall asleep randomly and have no control over that right now.’

Gah. Gah indeed.

…and actually, thinking about it, this may be #4. I assumed I’d fallen asleep, but come to think I’m not certain…

*sigh*

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So, I had another one of those episodes I mentioned in my last post, where the world keeps going and I just…pause. Fortunately, this one was only about 10 minutes.

My doctor has run a large panel of blood tests to see if it could be a chemical imbalance or infection, and the answer appears to be no.

This leaves the current top theory as absence seizures, with some form of autonomic disfunction as the second possible thing going on. I have a lot of other symptoms that could fit with an autonomic problem, so it’s still under consideration, but the current priority is getting me to a neurologist.

Naturally, I’m no longer allowed to drive. This is an enormous handicap, as I have really relied on my car. Hudson does NOT like public transportation, and the way to school includes a trolley and a subway. I’m not sure how this will go, and am rather concerned about it. What can you do, though? I’m sending emails to all of my professors and the dean of students explaining the situation, but what it comes down to is that I’ve already missed as much class as is allowed for the semester, so I have to get there and that’s all there is to it.

As if that wasn’t enough, I think I’ve sprained tendons in my left wrist. When I take Hudson out to exercise, I don’t have a big yard or access to a completely enclosed area, so I have to keep him on a long rope. The ground was harder than I realized today, so the ball bounced much farther than I thought, and 65 pounds of dog hit the end of the rope going top speed. The tendons leading from the forearm to the fingers are in agony. I’ve iced and wrapped my hand and forearm, and I’ve taken ibuprofen, but I suspect this is going to be deeply bothering me for several days.

….while I try to manage Hudson on the trolley and subway, which he is afraid of, so that it often takes a fair amount of strength in both arms to get him on and control him.

Bugger.

I’m just glad that my boyfriend is able to drive me to and from school Monday and Tuesday so I don’t have to attempt public transportation until Wednesday.

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Well, that was odd

I had a strange and slightly frightening thing happen this morning.

I lost an hour.

I was running late. I forgot to set my alarm, so I had about 15 minutes to get from bed to out the door. I got dressed, ate my breakfast, and then sat down on the couch to figure out what I needed in my backpack and get it ready. It was close to 10:00 and I was right on the edge of making it out of the house on time. I was wide awake and in a hurry. I was sitting on the edge of the couch so I could move books around, and that’s when it happened…
whatever ‘it’ is.

As far as I remember, the next thing that happened was that I grabbed my water bottle and went to the kitchen to fill it. However, the clock in the kitchen said it was 10:56. That’s not right, I thought, and pulled my phone out of my pocket to check the time. But my phone agreed with the clock in the kitchen.

There are a number of things that could have caused this. However, this isn’t the first time I’ve done this, just the most severe.

As a child, I’d have this happen many times. It would be spells of just a few minutes, and not common enough that my parents thought it was a problem. They thought I was just daydreaming, but that isn’t what happens. It is like I pause while reality keeps going. At least back then, I’d pull out on my own in a few minutes, or if I was touched or something broke my line of sight. I often would ‘come to’ with a bit of a jerk, like you would if you had just woken up.

I’m remembering now as an undergrad and as a grad student times when this may have happened but I assumed I had fallen asleep. As I just mentioned, there tends to be a jerk when I get to being ‘present’ again, and I can’t tell you for certain which happened when. I do suspect that some of the times that I jerked back to awareness involved this lack of presence, but I don’t know how many.

So, as soon as my insurance gets straightened out next week, I suppose I’ll be seeing my doctor, and probably being sent off to a neurologist. You know how much I needed another specialist *rolls her eyes*

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A piece of fantastic language out of the dissent in a Supreme Court case. Dothard v Rawlinson, 433 U.S 321 (1977)

“Once again, the pedestal upon which women have been placed has, upon closer inspection, been revealed a cage.” (internal quotes not indicated)

An entirely too true statement; so often, women are trapped by the supposed pedestal that they are placed on. I’ll admit, it makes me smile that these words come from Justice Marshall, a man who was amazingly consistent in his championing of the cause of equality.

I think this can be true of the way PWDs are treated as well; especially on topics like token assistance. I believe I’ve mentioned token assistance before – it is the type of assistance where a person who is AB does a small act, one the PWD can usually manage for themselves, and it is usually motivated by this need to feel good about doing a favor for a person they believe obviously requires the assistance.

You hold the door open for me because you do not think I can manage it on my own, or that I ought not have to struggle with it. Yet, please, consider – if you do not allow me to practice my adaptations, like using my service dog to pull doors open, how much more I will struggle when there is no hovering over-helpful person to ease my path? And if you do not consider me capable of doing simple things like opening doors, how much more do you decide I am incapable of because you have noticed I have a disability? It is a delicate balance between making necessary accomodations and assuming that a PWD is incapable of doing things for themselves. The balance, I find, is often best served by asking if a person requires assistance and being willing to render what they ask for, even if it is not what you expect – sometimes the best assistance is letting me do things for myself.

(For those of you interested: the case was involving a refusal, in Alabama, to hire women for ‘contact positions’ inside of prisons – that is, any position in which the person would have contact with prisoners. The claim was that there were sex offenders in there who would offend again if given access to female guards, and the lack of a ‘normal heterosexual atmosphere’ would drive other prisoners to assault female guards as well. The violent conditions, crowding, and understaffing, admittedly in violation of the Constitutional safeties that were supposed to protect prisoners, were deemed such that they would put female guards at constant risk. I find it a source of embarassment that this decision was handed down the US Supreme Court. As Justice Marshall so aptly said, the analysis sounds distressingly like saying two wrongs make a right. He was a very wise justice, Marshall was.)

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Well, yesterday I managed one of the typical stupid injuries that just…happen around here. They’re typical mostly because of the connective tissue disorder I live with, but also because of the sheer number of old injuries and the touch of clutziness that is rather typical of people with life-long connective tissue disorders.

I dislocated my shoulder.

Now, before you all get worried, I’m fine. I missed my afternoon class, and called off the girl who comes in in the evening because I wasn’t in any shape to supervise.

The real annoyance comes in with how I dislocated my shoulder. I wasn’t doing anything particularly stupid; didn’t try to lift something heavy, catch myself falling, get yanked on by the dog, or anything of that ilk. No, I just tried to take a sweater off.

Out of habit, I tend to take pullover sweaters off the same way – I cross my arms and grab the bottom edge of the sweater, then pull up and over my head. I got about halfway when my left shoulder – the fragile, tempermental, and generally infuriating shoulder – decided it wasn’t in the mood to do that.

I had to have my boyfriend ease me out of the sweater around the dislocated shoulder, which got jostled in the right way and snapped back into place in the process.

Yes, ladies and gentlemen, just getting in and out of basic clothing is dangerous when you have EDS.

It’s a lot of things.

First off, let’s start with the basic shapes of clothing. You see, it doesn’t take much to pull the joint of an EDSer out of place. A jacket that pulls just a little at the shoulder. A sleeve that bunches too much at the elbow. Pants too long, stepped on, can put out any joint in the leg. Shoes that aren’t JUST RIGHT – and even ones that are – can put out any of the myriad joints in the foot. As can socks that are too big or too small – too big and it can bunch and wrinkle to the point of dislodging joints, too small can squeeze joints out of place.

Going beyond that, putting them on. It is oh so easy to put a shoulder out when donning or doffing a jacket, especially the heavy winter variety, and elbows can be prey to this as well. As I mentioned happened to me yesterday, clothing that comes over the head like shirts and sweaters can dislicate the shoulders, or alternatively wrists, hand-joints, or elbows. Putting on pants is just downright dangerous – either you are sitting down and put them on, in which case you need to stand before you have them all the way up, or you put them on standing up and wobble and try to stay upright. Either way, you’ve got a risk of falling, you put a lot of pressure on the ankles, and if you’re wearing tight pants you risk putting a hip out. Socks can be hard on the fingers and toes.

And then there’s the fasteners. Ever thought about how hard it would be to do up your fly when gripping something too hard can dislocate your fingers? Not to mention buttoning shirts, zipping jackets, doing up a jacket, lacing shoes… Any one of those is a risk to my fingers, and some are a risk to wrist and shoulders as well.

Sadly, the kind of clothing that doesn’t produce these risks is not exactly the sort of thing a well-heeled future attorney wears. While my pyjama pants are the height of comfort, Tinkerbelle does not exactly set the right tone. And frankly, when it comes to anything on my upper body, well EVERYTHING is a risk!

And before any of you says it, no, going naked isn’t an option, either. My boyfriend might appreciate the view, but I appreciate not being locked up, and not having all the goods on display for the whole world.

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Today, the Jag Corps made a presentation on campus about working for them.

For those of you not familiar with the military, Jag Corps are the attorneys in the military. They advise on the legal ramifications of actions, defend and prosecute in court-martial cases, and help establish protocol and whatnot.

In a sense, the Jag Corps are the in-house attorneys of the military. Most major corporations have their own attorneys that do basically the same sort of things.

Now, I’m sure most of you know about the military’s infamous ‘Don’t ask, Don’t tell’ standard regarding sexual orientation. That is, as long as a person who is gay, lesbian, bisexual, or queer doesn’t tell anyone, it’s all good and they can play. They can’t get benefits for their partner, obviously, but they can be in the military.

Last week, before the Jag Corps started interviewing here, the school sent around a memorandum. It was a resolution passed by the faculty of my law school in 1997 and reaffirmed and updated a few times. The short version is this: the school is opposed to the military recruiting because of its discriminatory stance on sexual orientation, but they cannot act on that opposition and bar the recruiters because they will lose all federal funding – including our student loans. This resolution is sent to every student, to every faculty member, and to every employer who uses our career center (including the military, I assume).

So here’s my question: why didn’t the school say anything about people with disabilities?

I thought well, maybe it’s because the military realizes that an attorney’s value is not based on whether they can run a mile and do the right number of sit-ups and push-ups in the right amount of time. Maybe, because the Jag Corps officers are never in combat, those of us with physical handicaps can still apply for the jobs.

WRONG!

Nope. A Jag Corps officer (all members of Jag Corps are officers) must complete basic training. They also have to complete bi-annual conditioning checks that they are able to run their mile and do their sit-ups and push-ups.

The fact that I have fire and passion and intellectual brilliance does not matter to the Jag Corps, because I have a physical disability.

And apparently, my law school has had nothing to say about THAT discrimination.

I wrote an email off to the dean about this issue, and if I hear back, I’ll tell you what she said.

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