Archive for April, 2009

Folks, one of the contributions many of us make towards changing the world one piece at a time is Blogging Against Disabilism Day.

You are welcome to participate if you are interested in writing a post on May 1 about disability discrimination, disablism or ableism.  Whether you are non-disabled, a person with a disability, someone with a cane, crutch, or chair, disAbled, crip, gimp, differently abled or any way you want to describe it, you are welcome.

Please join me! Let your friends and anyone who reads your journal know that people with disabilities are people first!

Blogging Against Disablism Day, May 1st 2009

Blogging Against Disablism Day


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Guys, on reddit and digg you kind of need a critical mass for people to actually see you. On reddit I’ve been found a fair number of times, but not so on digg.

If you guys could upvote me on both, I would really appreciate it! Here’s the links:



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I know, I know, I still owe you guys the second half of the access/accomodation post, it’s just that this popped up and I wanted to talk about it…

I’m sure that every person with a disability has at some point encountered the pity effect. This is fresh on my mind right now because someone at reddit.com responded to my post about needing help to get a service dog by asking ‘Why should I pity you?’

I can speak with confidence to say that the vast majority of us do not want to be pitied. Sometimes we want help, sometimes we want sympathy, sometimes we just want someone to give a damn. But pity? No.

Self-help books and presentations everywhere speak to the uselessness of wallowing in self-pity. It’s a waste of energy, it doesn’t help, it really gets you stuck on your problem and doesn’t let you think of solutions, so on.

If self-pity is so bad, then why do we ever think that pitying others is good?

When someone is pitied, they stop being a human being to the person who is pitying them. Instead, they are a thing – an object. We become a disability, a problem, a sad story.

It sets us apart. When people pity, they feel guilty when they interact with that person, so it becomes ‘painful’ – and that ‘pain’ gets transferred to us, so that people who pity see US as painful! Nevermind that what’s painful is their reaction to us, and choosing to see us as a pitiful thing instead of a fellow human being.

Okay, so many of us need help.

Would you pity someone who asked you to grab something off the top shelf because they are too short to reach it?

Would you pity someone who asked you to help set up for a party because they don’t have the time to do everything?

Would you pity someone who needed help with a door because their hands were full of groceries?

Then why pity us when we need help?


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At the suggestion of a friend of a friend, I posted this to fark.com and reddit.com.

I suppose I shouldn’t be as surprised by the automatic response that it’s probably a scam, though I’ll admit it hurt.

One person suggested a running total – I’ve now raised $1778.70 (the odd bit of change is due to exchange rates on international donations and fees taken by paypal). I had posted on March 31 what I had raised to that point, and I apologize for not having updated since then.

I’m not sure how I can prove that I’m ‘real’. The reason that the call for help comes so early in this journal is a timing coincidence, really.

I started this journal 5 weeks after I finally recieved a diagnosis, mostly because it felt kind of silly trying to give a bit of a view into the life of a person with my disability when I didn’t know for certain what my disability was. It took me a little while to actually accept what is really a horrific diagnosis enough to start writing about it. Can you imagine, at 25, being disabled and knowing that physically speaking, this is as good as it gets?

The reason for this new journal was twofold. First, I wanted a place I could talk frankly about what it was like living with my disability where I wouldn’t need to worry about my ‘real life’ finding it. The field of law is a very insular, tight-knit field. I have already had a “colleague” – a fellow law student – find my personal journal and make a vicious comment in what was a very vulnerable post. Second, I wanted to at least try to do a little bit of educating – about living with a disability, about my particular rare connective tissue disorder, and about disability rights.

One of the most distressing things about becoming a person with a severe disability is the way that it seems as if the world doesn’t ‘get it’ and doesn’t want to. If what I write gets through to people who are healthy, then maybe we can stop having things like the horrible false dichotomy that came up in a conversation with my mother last winter: we should be grateful for complete strangers asking us about our medical history because then we aren’t invisible and ignored.

When we have these ‘invisible illnesses’ – things that leave us looking perfectly fine to a casual observer but in pain, fatigued, plagued by symptoms that make no sense, and even disabled – we are often told that our pain is not real, our symptoms are imaginary, and our disability is just laziness. This, I think, is part of why the suggestion that this is all a scam stung as much as it did. Another case of being told that my life isn’t real.

Edited to add: I figured out how to get wordpress to keep this running total posted on the page where it’s always visible. I’ll try to remember to keep it updated!

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Just a quick note –

A few people have asked about my location.

I’ve actually deliberately kept that out of my blog here for a reason. About a year ago, a ‘colleague’ found my personal journal. They left a vicious comment, when I was feeling particularly vulnerable, and I was deeply hurt. It’s a bit easier for me to maintain my anonymity if I don’t mention where I’m from, or what law school I attend (only a bit, but still, every bit helps).

If you have a particular reason for wanting to know where I am, please feel free to message me and ask! If I don’t feel comfortable telling you, please please please, don’t take it personally.

In complete honesty, most people who know me ‘in real life’ do NOT know about this journal. Why? Because the kind of vulnerability and honesty that I present here is something that is I do not want to be seen by my classmates. The law is a close-knit, small community, and it’s also a fairly vicious group. The social atmosphere in a law school is very similar to a high school, and I’m sure all of you can imagine what would have happened to someone who spoke as I do at a high school.

So, if you do know where I’m from, I trust you not to spill it. Thanks.


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Friday, my boyfriend and I made a trip out to our service dog group to meet Hudson. The group I’m working through has monthly ‘graduate classes’ – training sessions for pairs that have already passed the big group training and are living together. Your first year, you’re required to attend 6, but after that they’re optional.

At these graduate classes, ‘prospectives’ are encouraged to attend to watch the dogs and see how the pairs work together, and also to be paired with a prospective dog and see how they interact. You just get a dog on a leash, the trainer introduces you, and you have a very small handful of commands you’re allowed to use (sit, down, off).

My first impression of Hudson was that he had an enormous head! I know you can’t really tell in the pic, but his head and particularly his muzzle are very large. Between his big ol’ mouth and his whiskery coat, I don’t think hudson will be a dainty eater.

His coat is coarse, like a poodle’s, but not curly. We have to get human hair-cutting scissors, because his coat will need to be trimmed. I expect my care assistant will be doing a lot of that. I am very lucky to have a state paid care assistant who comes in for 2 hours every day to help me take care of the house. I expect that much of that time will be extended to taking care of Hudson when he comes home. The boyfriend and I will be moving in together, so I suspect there will be slightly less housekeeping and cooking for the care assistant to do. (and for those of you who are thinking that me moving in with the boyfriend means I shouldn’t need a care assistant – why should he be doing the same work unpaid just because he loves me? The care assistant is to make up for my inability to keep house like a ‘normal’ person, not to “reduce” the boyfriend’s work. It’s making it so I can have a more normal life. Besides, who’s gonna make dinner if he’s away?)

Anyhow, back to Hudson. While his head is huge, he’s no small dog. The boyfriend has already joked about how cramped it’s going to be when we fly somewhere. Hah. We’ll have to sit in a bulkhead, and woe betide the third person in the row with us! (well, in all honesty, I hope that they like dogs, because I really don’t like the idea of making someone uncomfortable, even if I have a right to having my service dog there) The boyfriend says we’ll just have to buy our own plane. Somehow, I don’t think SSI will cover that.

Hudson was very, very interested in what other people around us were doing, and the walker that belonged to the lady next to me, and in going back to his trainer and in Chris’s shoes, and in my bag, and in…well, I think you get the point. Getting him to learn to pay attention to me is going to be a challenge, I think, but his trainer assured me that once he’s bonded with someone he’s not as much of a turkey.

It really was exciting to get to meet him. I wish we had pictures to share, but we had trouble with cameras! I’ll send the boyfriend home with some to post as we start training if I don’t manage anything before then, I promise.


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This friday, I’m going to be heading out to the service dog trainers to meet Hudson! I was afraid I’d have to wait until next month, but things lined up right and come Friday afternoon, I’ll actually get to see him.

I’m sure you can all imagine how excited I am about this! When my boyfriend and I figured out we could go, we were both excited – there isn’t a sunday class this month, so we would have had to wait until May, except that my Friday class cancelled…so here we go!


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Well, I’d meant to make my next entry the second half of my Access and Accomodation musings.

Instead, I’ve gotten another piece of very rough news, so bear with me here a little.

I recieved the report from the geneticist who diagnosed me yesterday. It had some…unexpected things in it, none of which were good.

There were the little things that weren’t good – need to get my hearing checked because I wasn’t hearing things evenly on both sides, signs of gingivitis in my mouth, that sort of thing.

And then there was the big one.

While I’ve been diagnosed with EDS, I’ve been diagnosed with what is considered one of the relatively more ‘benign’ varieties. You see, while classical and hypermobility types of EDS will destroy your joints pretty thoroughly, and cause a variety of (relatively) minor problems with your organs, not to mention the…interesting…scars and stretch marks all over, they don’t have the high potential for fatality that vascular type has.

But now I need to be tested for vascular type. Or rather, my grandfather needs to be, because if I have vascular type, it comes through him, and all of my aunts and uncles need to be tested. If he won’t do it, apparently, I really need to.

I’m upset. I mean, I mentioned my suspicions of possible vascular type in the appointment, but really felt like the answer was that it wasn’t likely. I now know that I have markers that match up with vascular type – I have grey scelera (that’d be the whites of the eyes) and my most profoundly hypermobile joints are the small joints of the hands/fingers. Both of those match up with vascular type. I hadn’t thought this seemed likely, and yet…well, here we are, facing expensive genetic sequencing. The vascular type is the only one for which there is a conclusive genetic test.

The life expectancy of someone with vascular type is on average 50 years.

I’m sure you can imagine, my boyfriend and I are devastated. I haven’t told my parents what the implications are yet, because frankly until we know I have it, I’m not willing to do that to them.

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Okay, since I now actually have readers, I’m curious about what you guys want to see.

Obviously, there are things I want to talk about – the impact my specific disability has on my life, the legal import of having a disability, and of course Hudson.

But what do you think I could talk about that you want to see?

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The worst part of my grandmother dying when she did is that I cannot go to the funeral.

I do not travel well.  It takes me about a week to recover from a cross-country flight (though I recover quicker on the end where my parents live, because the weather is nicer and steadier).  It’s near the end of the semester – classes end at the end of this month.  So I cannot afford being at less than my best, because I have an enormous research paper that I am already horribly behind on and I have an exam to prepare for.  Have I mentioned that in law school, with few exceptions, you have one thing – in this case, a paper or an exam – that is worth your entire grade?  Makes it a bit more stressful.

I have no family on this side of the country.  Most are clustered around where I grew up (and my parents still live), with the rest of them within a few hundred miles.

The phone call from my sister giving me the news came after my boyfriend had left for the week, so…it’s just me here.

I feel very much in limbo.  The woman who was the grandma I grew up with has slowly slipped away the last few years as the alzheimer’s has gotten worse.  I’ve been grieving for losing my grandma for years now.  And now, she’s finally gone.

It’s a bit of a relief, though, because it means her suffering and wishing to join her husband is gone.  One of the last things that made a really indelible remark on her memory was the death of my grandfather, and because of the alzheimer’s, it is always fresh to her, so she has been torn apart by this grief for years.  She has wanted to just stay in bed all day for at least the last 2 years. 

I think moving her into a home was the best thing we did for her, because few of us had the heart to sit there and fight with her and drag her out of bed, or force her to eat or take her medication.  When I was taking care of her, I often ended up telling her that her food was ready, and when she asked why I made her food I’d say why, you asked me to make you this!  Come on, come have lunch with me, my food is ready too.  I’m sure you can imagine how hard it was for us, to have to lie to her to get her to eat, or get out of bed, or…well, do just about anything.

So now she is gone, and we’ll never find ourselves in that position again.  I think this will be a great weight off of my mother, who will then just be raising my nephew.  My sister is emotionally unstable and has not really bonded with my nephew, so my parents are really raising him.  This is likely to become official soon, as my sister is planning to join the Army, and they will not accept single mothers who have custody of their children.  So my parents will then have custody of my nephew.  I do not think my sister will ever be able to parent him herself, and frankly with my disability we have come to the conclusion that neither can I.  So my parents are in their early 50s with a baby.  It is obviously not an ideal situation, but there aren’t really any better alternatives, because my sister doesn’t want to put the baby up for adoption.  I hate that they will be raising the boy into their late 60s and early 70s, but what else is there to do?  I wish sometimes that I was on the other side of the country so I could help more, and I do plan on moving back eventually.


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