DiversifYA: David Gillon
|September 25, 2014||Posted by Marieke under Disability and Illness, DiversifYA, Mental Illness and Neurodiversity|
Today, the wonderful David Gillon joins us at DiversifYA! I’m particularly excited about his interview because David was one of the first other bendies I met, and getting an insight into his experiences was such a recognition to me (yaay, representation!) I also had the chance to meet David at LonCon this year, and I can attest to his awesomeness 😉
1. How do you identify yourself?
I’m a disabled person – this doesn’t mean I haven’t heard of Person First Language, it means I’m a follower of the Social Model of Disability, which says that disability is the discrimination I experience as a result of society’s failure to provide for the access needs* I face due to my impairments. So when I say I’m a disabled person it is a political statement and I’m declaring myself as someone society discriminates against. That tends to be the dominant position in the disability movement in the UK rather than using ‘Person With a Disability’.
On a more detailed level, I’m someone with Hypermobility Syndrome (HMS), which means there is a genetic issue with my connective tissue, the tendons, ligaments etc that are supposed to hold my joints together don’t do it very well. So I have problems with walking, sitting and standing, use crutches, am epically clumsy, and have major issues with pain and fatigue as my muscles are trying to hold the joints together all the time, rather than the ligaments and tendons doing it for them. It probably also means I have Ehlers Danlos Syndrome – Hypermobility Type (EDS), but I don’t have a formal diagnosis of EDS as there are a very limited number of EDS specialists in the UK. I’m also dyspraxic (think of dyslexia, but for coordination) and neurodiverse.
Online I call myself a #bendy – the ingroup nickname for people with HMS/EDS, a #spoonie – ditto for people with impairments causing fatigue issues, and a wobblie – people with mobility impairments who can walk, though I’m on the verge of transitioning to being a wheelie, you can probably guess what that one means.
* Access needs doesn’t just mean the provision of ramps, the Social Model also needs society to address access needs that are attitudinal – ‘I’d rather be dead than in a wheelchair’, organisational – ‘I never thought about a disabled person applying’ – I literally had that said to me in a job interview, or societal – ‘hard working people are entitled to feel jealous’ – a direct quote from my Member of Parliament when debating the rise in disability hate crime with me on TV news.
2. What did it feel like growing up having HMS/EDS?
That’s a complicated one! I’m 50, so I grew up in the late ’60s and the 70s, and no one had heard of Hypermobility Syndrome, or of dyspraxia, or neurodiversity. The combination of clumsiness and social awkwardness meant that I faced a lot of bullying, and tended to be perceived as a bit of a clown – unfortunately growing up didn’t really change that, until I started identifying as a disabled person and standing up for my rights, which went down like a lead balloon. While HMS/EDS is present from birth it often isn’t noticeably disabling until early adulthood, so while I was aware something wasn’t quite right with my body, it wasn’t something I realised was a disability until a fall at the age of 25 kicked it into high-gear. At school I was always the last one picked for any team game, and it even intruded into the classroom – I remember being held back inside at lunchtimes and forced to try and write tidily, which anyone with HMS or dyspraxia will tell you is guaranteed to make your handwriting worse, not better. I also remember my biology teacher, one of my strongest advocates, saying just prior to A Levels (the exams taken at 18 in the UK) that I was guaranteed to pass ‘providing they can read his handwriting’. Nowadays teachers are trained to spot these issues and I’d be allowed to use a keyboard instead, but back in 1982…
3. What are the biggest challenges? Conversely, what are the quirks/perks?
For me my major issues are with the large joints, especially hips and shoulders. Classically HMS/EDS is associated with abnormal finger movement, e.g. being able to bend your thumb back to touch your forearm, but my hands have relatively ‘normal’ ranges of movement. As I have significant issues with my hips and pelvis I have major problems with sitting, standing and walking. I’ve used crutches for twenty years and I’m in the process of switching to using a wheelchair. Basically it feels like my body doesn’t quite fit together and every time I stand up I have to work out how my body is working today and adjust my balance and walking to suit. It’s absolutely normal for me to switch which leg I’m limping with several times a day. I’m fortunate that I hardly ever dislocate joints and even my subluxations (partial dislocations) are very mild, but feeling the sacro-iliac joint in my pelvis physically slide from one position to another is something I’m never going to get used to. Problems with sitting for extended periods essentially ended my career as a software engineer (management had a problem with finding me curled up on the office floor in the foetal position, in too much pain to think straight) and since giving up work I’ve now also developed problems with my neck and shoulders which mean I have parasthesia (pins and needles/loss of coordination) in my left hand about 50% of the time. And then there’s the pain, and the fatigue….
Having said that, my quality of life is pretty good, so I’m in no ways desperate for a cure, the only thing I’d like to get rid of is the pain and fatigue, everything else I’m used to/is part of me.
Quirks and perks? People with HMS/EDS tend to have ‘party tricks’, extremes of bendiness, and we’re encouraged NOT to do them, as we damage our joints when we do. Mine is placing the sole of my foot on the crown of my head, which isn’t really very useful. I get slightly more use out of being able to pick up small objects with my toes and transfer them to my hand without bending down. I once mentioned I had HMS/EDS to a doctor and had him ask me if I could demonstrate any party tricks – I wouldn’t have cared so much but I was in the ER with a heart scare at the time….
4. What do you wish people knew about having HMS/EDS?
That it exists! And even when people know that it exists, it tends not to be taken as serious, yet a fellow bendy was telling me the other day that the average life expectancy with the (rare) Vascular EDS subtype is only 46 years. Fortunately most of the subtypes don’t have life-threatening consequences, but they are often extremely life-limiting, I have friends with HMS/EDS who dislocate major joints multiple times a day and who describe waking up as ‘putting themselves back together’ due to the dislocations they experience while sleeping. Even with my comparatively mild case I’ve ended up losing my career over it.
5. What are the biggest cliches/stereotypes you’ve seen?
There is an English term ‘double-jointed’, I don’t know if equivalents exist in other language, that is often used to describe the effects of HMS/EDS by people who DON’T have it, the problem is being ‘double-jointed’ is universally presumed to be advantageous, and HMS/EDS most certainly isn’t.
BONUS: What is your advice for writers writing diverse characters.
1) Do the research.
2) Do the research.
3) Seriously, do the research! The number of stories about disabled people that end with a cure, or presume we are fixated with a cure, drives me up the wall. There are disabilities where the desire for a cure is dominant, for instance spinal injuries, but there are also disability groups where the idea of a cure is considered seriously disturbing, noticeably the Deaf and neurodiverse communities – I identify as neurodiverse and it’s a large part of who I am as a person, why would I want to change that? Even with HMS/EDS the mobility impairment doesn’t particularly disturb me, it’s just the pain and fatigue I could do without. Disabled people are almost disproportionately online, it’s a major lifeline for those of us who don’t get out much, and most disabilities will have advocacy websites with information on the disability and a little searching or a broadcast request on twitter should turn up someone willing to talk to you about what living with that disability is really like. And be prepared to leave your preconceptions behind because disabled life is often not remotely what non-disabled society holds it to be. Take ‘I’d rather be dead than in a wheelchair,’ OMG, wheelchairs are incredibly enabling, they give people with mobility impairments a degree of freedom that they couldn’t experience otherwise, but society considers them ‘giving up’.
If you have a specific contemporary setting, look it up on Wikipedia, for most major cities, and many smaller, it will tell you the demographic breakdown of the population. If your cast of characters doesn’t match that, ask yourself why.