“But you don’t look disabled?!”

Originally written in July 2015

Yesterday I went into Oxford. It was raining heavily and the closest car park to the city centre has closed, meaning I either parked and walked 10-15 minutes to the city centre or got the bus. The bus option won because no-one likes trooping round in torrential rain. There was a bus already waiting at the bus stop in the town I live in. I quickened my walk, the bus driver realised I wanted to board said bus. He waited until I was approximately ten metres away from the bus, closed the doors and started to drive off. Fuming. I don’t know if the odd few bus drivers get a kick out of doing that, especially in the rain. And I say the odd few because I will say now that I know it isn’t every single bus driver.

I am going somewhere with this, it isn’t just a monologue about how I went into Oxford and overspent on things I didn’t really need. Given that I was so close to the bus and it was raining so heavily, I ran to the bus, the driver opened the doors and I thanked him for waiting. I honestly wish I hadn’t bothered. He turned round to me and said “just because you’re young and pretty, don’t think you can’t run.” I replied with “actually, I have two disabilities which mean that I shouldn’t be running. Don’t assume that because I am young it means that I can run.” As I walked/hobbled off to get a seat his final remark was “people like you make me lose my patience.”

Now, that comment could be portrayed in numerous ways. People like me could mean young women, young women who don’t want to look like an utter tit running for a bus, young women who stand up for themselves and don’t stand for any shit or young women who are disabled. I don’t know what the bus driver meant and I’m not going to jump to conclusions, but whatever was meant, it wasn’t necessary. It is plastered all over public transport that companies won’t stand for any foul or abusive language being directed at towards their staff…but hang on, is the opposite okay? Are staff allowed to speak to passengers in a way that degrades them and is plain rude? On Oxford Bus Company it clearly is okay.

I don’t look disabled and I don’t class myself as disabled, so what I said to the bus driver was going into technicalities. A few months ago I was diagnosed with Ehlers-Danlos Hypermobility Type and fibromyalgia. Neither came as a great surprise, since my last operation two years ago, it’s been glaringly obvious that my body isn’t “normal” and as a teenager I had a string of joint injuries which were bizarre and downright stupid – a close friend holding my hand and dislocating my finger and flipping a tendon round comes to mind (you know who you are!) It also explained my body’s complete inability to fight infection and how a simple cold would end up turning into a throat, chest or ear infection and result in me needing to sleep for about 10 days to recover – something which is only getting worse as I get older. So, like I said, not a great shock. There was a fair amount of anger that I have reached my twenties without this being picked up, meaning that the conditions have worsened, meaning I will probably need more surgery. I’ve also had major joint surgery, carried out by one of the top hip consultants in the country and he missed it. Twice.

There are times when EDS and fibro leave me unable to walk or even get out of bed or get dressed. These periods of time are referred to as “flares” or “flare ups”, my most recent flare up is only just petering out and honestly, it was shit. It hit when a lot of my friends were leaving university so my Facebook newsfeed was full of statuses about them being qualified teachers and having their first teaching jobs. I, on the other hand, was genuinely proud of myself for getting out of bed and getting to a medical appointment without vomiting in the car. I am really happy for my friends, teaching wasn’t right for me, health issues aside and I feel content with my new future plans and job. But the selfish part of me sort of hated them, when all I was capable of was watching Netflix or crying at people because of my pain. Thankfully post-flare, I am nothing but happy for them and I know they are all going to make fantastic teachers.

During this most recent flare, I decided to bite the bullet and be super honest about my current situation on Facebook, something which I hadn’t ever done before. This included a pyjama picture, showing my unequal legs, due to wonky pelvis and a detailed caption reading

My body is well and truly kicking my butt at the moment. Wonky pelvis means very wonky legs with my right leg being a good few inches longer than my left. I have limited feeling down my legs due to trapped nerves and compressed spinal disks and today just to add to the fun, my pulse has been rising abnormally when I go from lying down to sitting/standing. In case anyone thought Ehlers-Danlos was easy going, it’s not. I want my life back.

I didn’t and I still don’t want sympathy. Feeling sorry for myself isn’t going to change my situation and I don’t want to be wrapped up in cotton wool. It can be hard and I don’t deny that. I’m at an age whereby social media is filled with people having babies or their nieces/nephews and it scares me whether or not that will be possible for me. Physically I don’t know if my body is strong enough to deal with nine months of pregnancy and I don’t want to put my life or my future child’s life at risk in childbirth when no one really knows what will happen with my body. The natures of EDS and fibro are unpredictable. The last flare up was the worst I’ve experienced and I was close to being hospitalised because I couldn’t manage the pain and realistically I know this will happen again. I can’t predict the future but it does scare me because I don’t know if or how much my health will deteriorate.

About a year ago, a young person who I supported at work made a really inspiring comment about her views on disability.

I don’t like the term “disabled.” I am not not-abled. I am able, with a few adjustments made. Everyone is able, but in their own unique way. Adjustment is part of life. Don’t add a “dis” to that and make me feel inferior.

Powerful words from a young person. And she’s 100% right. I have a lot of friends who, technically, are disabled but don’t view themselves as such. A close friend who I lived with as an undergraduate is deaf. You wouldn’t know it, her subtle lip-reading abilities are spot on. She makes adjustments by having subtitled on TV and we had to make sure we faced her when we were talking, but she isn’t treated any differently and most of the time I forget she’s deaf, unless I’m being dragged to ear appointments and watching gross ear procedures.

Being disabled isn’t restrictive to being in a wheelchair. You can’t necessarily guess whether or not a person is disabled by looking at them. I’m not saying that we should be tiptoeing around each other, afraid of making assumptions but it goes back to my favourite word respect. In the case of the bus driver, I explained why I hadn’t turned into Usain Bolt and sprinted to the bus; maybe I was expecting too much for him to back down and apologise but I certainly didn’t expect him to continue with such an insulting attitude.

There are so many conditions which fall under the umbrella of invisible illnesses and we aren’t going to learn unless we open our minds to unknown conditions and make the effort to learn about them. I have been incredibly lucky, my friends have tried to understand EDS and fibro and they have all been really supportive, even if my body’s ways confuses them. It confuses me half the time and I don’t expect someone who hasn’t even heard of the condition to suddenly be a specialist on it. And thankfully no one has said something like “oh yeah, my aunt’s rabbit’s cousin’s nephew had that! I know loads about it!” because I think they know I would slap them.

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Update

After publishing a link to this article on my Facebook, a number of friends told me to contact Oxford Bus Company to make them aware of the incident. I was a step ahead and had already done so; I chose not to name and shame the bus driver on here, although I could have very easily done so. I had this to say to OXBC, along with the driver/bus/route details:

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Oxford Bus Company have already acknowledged this blog post, after a published the link of their Facebook page, but they are yet to comment on the actual incident itself. Obviously that in itself may take time, but I’m not feeling hopeful, considering they haven’t actually sent back recognition of my email.

I’m going to continue fighting this, not just for myself but for all the other people who have experienced similar.

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