How do you spell it?

Today is, once again, Blogging Against Disablism Day as well as May Day (Rise up, comrades!), as well as the start of EDS Awareness month. And yesterday was Walpurgisnacht, my favourite of all the non-holidays. And in a couple of weeks it’ll be International Goth Day. So I’m feeling celebrated. And this is also the month in which I’m going to write my dissertation, go to Stanmore for nebulously more treatment, and prepare for the Mod 1 bike test. So I’m going to be bloody busy.

 

Atop that, I’m going to spend all of May doing an EDS-HM alphabet; one topic, one letter, per day, basically focussed on hypermobility type but with nods to the others as well. If we include today, which is this little introduction (which throughout the month will get links to the other posts added) and a question-and-answer day at the end of the month, that gives me three days “off”. If I end up overrunning, I’ll just continue them on into next month.

 

As they say, if you want a job done, give it to someone that’s busy already.

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Spot on!

A brilliant post by fellow-BADD-contributor Liam (Of YetAnotherLefty) covering the topic of dressing whilst disabled.

The line of “It’s like we’ve been given a paintbox with red, green and yellow missing and then are looked down on for painting with mainly blue, brown and grey.” pretty much exactly sums up the difficulty of trying to look anything other than a bit down-at-heel and formless whilst disabled.

Go and read him!

Blogging Against Disablism Day 2015; Look left, look right, then look left again.

It may seem odd, after a year of writing and referring to myself as male, but also talking about my gynaecology appointments, to pick today to come out as trans. I’m, broadly speaking, a trans man – It’s not exactly clear-cut, since I’m never sure what other people are talking about when they talk about feelings of gender, but I feel uncomfortable being described as a woman or grouped with women, and when I imagine what “my ideal me” would look like, it doesn’t have perky breasts and rounded thighs, it has two days’ worth of stubble on its face, ginger chest hair, and the beginnings of a beer belly.

I’ve mentioned before that I was much more comfortable with my body in the past – When I was suitably athletic that “female” was a very long way down the list of descriptors that people looked for in describing me (They usually started with either “Ginger” or “Built like a brick shithouse”, then maybe “Covered in tattoos”, “Shaved head” and “Always wears that horrible army jacket”). Since being crippled, a large part of that ability to self-select which parts of my identity are my most defining characteristic have somewhat waned. It’s hard to make a good physical impression on the average person when, instead of striding up to them with a spring in your step and a grin on your face, you totter in slowly on crutches, then have to sit down and get your breath back before introducing yourself.

So, people’s first impressions are wrecked by my carriage – Small, distracted, unsure on my feet or not on my feet at all. Making a good impression in a wheelchair, when I’m not accustomed to using one, and thus sit in it like a sack of potatoes, is basically impossible.

Then their first impressions are stolen by how I’m dressed – I don’t have the option of peacocking around very much anymore. It’s not as if my absolute finery was particularly fine by anyone else’s standards, but I liked to wear what made me feel comfortable. Now I basically have to choose my outfits based on what I have the energy to put on – Jeans weigh heavy on my hips and restrict my movements, tight T-shirts are impossible to put on with injured shoulders, most of my coats and jackets are too heavy, or have impossibly stiff or fiddly fastenings, which are difficult to do with hands which only partially function most of the time. So I slouch around in worn-out greens, tracksuit bottoms, and loose T-shirts. In an attempt at dragging back some of my sense of self, I’ve taken to sewing my own clothes, to make things that’re comfortable and easy to put on and look right on me – This, of course, requires hours and hours of time per item, not always guaranteed to work as needed, and all reliant on extremely good health whilst working.

And finally, any chance of being percieved as masculine is taken away by the way that we construct masculinity and femininity – By no choice of my own, I’m forced to be passive. I can’t walk far, I can’t carry anything, I can’t drive, I can’t be physically active without really thinking it through first. I certainly can’t spend all evening propping up the bar anymore, either because my legs will give way or my medication will cause me to get incredibly loopy after four or five pints.

What makes matters worse is that EDS-HT (Ehlers-Danlos Syndrome, Hypermobility Type) is a very “feminine” condition. Despite actually affecting more men than women, more women are likely to seek help (as with most medical issues, really) and more women are likely to talk about it on social media or to go to support groups. As such, I know three cis men with EDS-HT, one or two AFAB nonbinary people, and dozens and dozens of women. Awareness for EDS in general is a bit… It’s not quite pinkified, and not quite explicitly woman-oriented, but it’s cute and quirky and definitely not brimming with the “You’re still a man” rhetoric of testicular cancer, or the “Ill health will strike, even if you’ve not finished your pint” aesthetic of heart disease. It’s a strange thing to be worried about, but I know that a lot of men, cis and trans, will be less willing to even seek treatment in the first place if they, like me, keep brushing it off as “Just another training injury” or “Yeah, my guts are a bit fucked up, I live on nothing but instant noodles and IPA” or even “Of course I’m tired all the time, I work hard”.

EDS, as well as the physical issues, seems to make us all look a bit alike – Big eyes, narrow jaw, small mouth, smooth skin, delicate wrists. Very, very feminine. It tends to make the men look gaunt and interesting, and the women look frankly adorable. When I was a towering inferno of energy and opinions, people tended not to notice that under the multiply-broken nose (Pretty much wearing my politics on my face) and cropped hair I looked like, at best, a seventeen year old boy that was almost fully-grown, but desperately waiting for his beard to grow in.

That was a long preamble. I’m not brilliant at self-editing, and all my thoughts seem to come out in one lump sometimes.

In a couple of days I’m going to the doctor to ask, for the first time ever, if I can have a referral to a gender identity clinic. I don’t know what to expect, other than that there’s a year-long wait.

I worry that, when I see the doctor, she will see a woman that’s lost control of her body so is desperately grasping at straws to change it, so will say “no”.

I worry that she’ll see all of the above – a genderless lump in a wheelchair, in a grey tracksuit, with lank hair and twig limbs – and find it so preposterous that it even has a concept of its own gender, that she’ll laugh me out of the clinic.

I worry that she’ll see someone who is already on so many drugs, that adding hormones to that mix would be an unacceptable risk for too small a gain.

These are not ridiculous worries. These are the worries of someone who lives in a society where gender is always linked to sex – not sex as in “physical sex” but sex as in “fucking”. And everyone knows that disabled people don’t fuck. Everyone knows that gender presentation is linked to being found attractive, or being percieved as your actual gender by your peers. And everyone knows that disabled people don’t have peers, they have carers. And because of the way that the media portrays us and society views us, disabled people don’t have an inner sense of self, we’re literally objects of pity; To be pushed across the road in our wheelchairs, or cited as examples of “Look at that lovely bright smile, despite the horribleness of its life” in inspiration-porn. These are the worries of someone who knows that cis people view transition as something completely cosmetic and optional, rather than being about as vital as pain relief or antihistamines.

For my part, I don’t even know where to begin. I do my best, I’m “read” inconsistently, I’m usually reluctant to talk about gender beyond a grunt of confirmation or a head-shake of denial, and my friends are incredibly supportive.

It’s a unique and horrible set of axes, and I wish there was a better map to navigate it with.