Battling across London Underground is rarely easy, so I decided to try it alone with a suitcase in one hand, stick in other. Because God knows, I love a challenge.
I try to be aware of invisible disabilities. I appreciate that some people use lifts for perfectly valid reasons that I just may not be able to see. Some are just having a tired day. Fine. I’m not the Lift Police. Fill your boots guys. Still, when a young guy ran into a lift ahead of me at King’s Cross a few weeks ago and didn’t think to hold the doors despite having seen me (having a stick to thrust between them is SO useful), I was less than delighted. Having got stuck in said lift with a sweaty, grumpy looking woman with a red spotty walking stick-shaped potential weapon, he tried to strike up conversation, probably as a defence mechanism.
“So, what happened to you?”
Sometimes, I try to come up with a pithy response involving wrestling lions on Tooting High St, but there was altogether too much blood in my caffeine stream at this point, so I settled with “I’m disabled, one of my knees doesn’t really work.”
“Oh.” Awkward pause. “You don’t LOOK disabled.”
Again, a moment where I wish I had something clever on the tip of my tongue. “Oh shit, did I forget my Wonky Person T shirt today?”. “Would you rather I stooped over a bit more and asked you for Benefits money, you insensitive dick?”.
Instead, I just answered with “Well, young people can be disabled too…”.
Another Awkward Pause (this is the slowest lift in London).
“So what did you actually do to your knee?”
SERIOUSLY?! Deep breath. Polite Smile. Think of the G&T awaiting you on the train.
“I have a condition that means my joints dislocate really easily. It leaves me in a lot of pain.”
“Oh, so like my elbow then? That’s always popping out.”
At this point the doors FINALLY opened. Which was fortunate really, because my exhausted, emotional, sweaty self was getting close to testing out his theory about his naughty elbow.
Later, on the train, with the Gin, I reflected. Was he really in the wrong? Not particularly. Generally, I’d rather people ask. I know that as an articulate, reasonably well-educated young person who happens to have a disability, the interactions people have with me can help separate Disability from the image pushed by some aspects of the media and politicians of a small section of society draining NHS resources and simply not wanting to work. But sometimes, being a self-selected advocate is frankly exhausting, and these interactions often occur when the last thing I want to do is put on a smile and prove I am indeed capable of maintaining a conversation.
If anything, I should have been grateful that he asked. That he didn’t just look at the stick, put on a quizzical expression and refuse to make eye contact. I have medical colleagues who struggle with this concept. So kudos to him, really.
I’m starting to look into getting a wheelchair for work. I don’t need it everyday, or for every placement, but it’s getting to the stage that I am avoiding doing things or going to places on my bad days, and I hate that. Last week I missed a theatre session for the first time, because I simply couldn’t manage to get from home to work and across the hospital. I was in too much pain. As a lovely fellow Wonky Medic on Twitter pointed out, if a chair means I can do more and do it better, it’s worth trying. For example, today, I want to be watching the Marathon in town. I’m actually in bed, because moving house and a 13 hr Labour Ward shift have taken it out of me sufficiently that there’s no way I could manage a day of pottering and standing. If I had a chair, that would be less of an issue (even with London’s interesting idea of ‘wheelchair accessibility’). I wouldn’t be in bed now.
The amazing Hannah Ensor (@stickmancrips on Twitter) has EDS like me, and has unwittingly become a bit of a mentor. Her blog is fantastic, and she’s suggested a great chair company, and she uses a ‘Quickie’ chair, which has the added feature of footplates that can be easily flipped up and out of the way, so I can stop my legs getting stiff by doing a bit of gentle foot propelling occasionally. Full price, they start at over £1000 (which is pretty daunting for a student…). There are funding options – the NHS has a voucher scheme, (which involves yet another GP referral – my poor GP is sick of the sight of me I think), and I may be able to get some Access to Work help from a JobCentre. I saw Occupational Health, whose contribution was disappointing to say the least; “See what your knee surgeon says.” “But I’m struggling to walk around the hospital NOW…”. So wheels are another battle I need to get through, but it’ll happen. And if there is a fundraising campaign to get it, we’re calling it ‘Get Pops a Quickie’…
On the plus side, I now have Bubbles, my second walking stick. She’s clear, and full of bubbles. Obviously. This means that a) people’s response to having a stick is now often “OhmyGod, where did you get such an awesome stick?!”, and b) she goes with ALL of my outfits. If I can’t buy stilettos anymore, I’m getting a walking stick wardrobe instead. I highly recommend http://www.neo-york.com – the lovely Lyndsay even cuts them especially short for me (long arms, short legs…). My next plan for Bubbles? I want to install a flashing LED in her, so if and when I go clubbing, she can flash while I wonky-dance on one leg. You’ll all want one soon. Right?