I’ve been thinking a lot about my body recently. In the last month I’ve been pushing it pretty hard, so I have a lot to reflect on. I talked about going to the March for Europe in my last article, and the preparation I put in beforehand to make sure my body would survive. Since the march, I have been doing a lot of walking and swimming. This brings feelings of terror and excitement. I fear I will dislocate and put myself back in my wheelchair. But I’m excited to feel the freedom my body hasn’t experienced in over five years. My current mission is to make myself stronger, stable, and resilient.
Any disability presents its restrictions and challenges. For some, these challenges can be obvious. For others, the lines are blurred. As a dyslexic, the challenges seemed quite discernible. I knew I would struggle with reading and writing. I knew my strengths would lend themselves to kinaesthetic activities, to art, to music, to the physical world. Dyslexia has been studied, understood and supported for over 100 years. As a student, my teachers had all heard of the condition, when I trained as a teacher we had lectures dedicated to the subject. The first use of the word Dyslexia was by Rudolf Berlin in 1887. However, it’s thought that Dyslexia has impacted people since the beginning of the human race.
Rudolf Berlin
I appreciate that compared to other conditions (such as blindness or cancers) Dyslexia is the new kid on the block. But when compared to Ehlers Danlos Syndrome, our understanding of Dyslexia seems old-hat. The first people to describe EDS were the physicians Evard Ehlers and Henri-Alexandre Danlos, at the turn of the 20th century. Hence the complicated and hard-to spell-name – us dyslexics never catch a break!
Although EDS has been known about for almost as long as Dyslexia, it has not been as widely discussed. And why? Well, there are many reasons. Dyslexia is surprisingly common, it’s fairly easily identified and there is much that can be done to support those with it. EDS is also known as an invisible disability. Anyone could have it, you can’t tell by the way a person looks, behaves or learns. It can be difficult, even for someone experiencing it, to understand it. It comes in many forms and has many symptoms. These are so varied and unpredictable. One day you might be grand, the next in a wheelchair, and the one after that, hunky-dory. Often people think you’re putting it on, moaning, complaining, or a hypochondriac. For me, my symptoms were so normal compared with other members of my family, we all assumed everyone experienced the pain we did. The result of all this is that EDS is something we just don’t talk about.
Left: Edvard Ehlers, right; Henri-Alexandre Danlos
Someone with EDS often doesn’t look ill. For me, this has a huge impact on how if feel about myself and my interactions with the world around me. I own a disabled parking permit, and every time I use it I feel anxious. I might get out the car without any aids, but that doesn’t mean I won’t need aids getting back in. The condition of my body can change in a heart-beat. That’s enough to make anyone worry, but it’s not the cause of anxiety. My anxiety stems from how others react to me using my badge. I have been shouted at, berated, sworn at, even pulled over by the police; for trying to park. I once left my car bay parked on a snowy day, to discover on my return enquiring footprints ending where my badge was displayed. If I feel particularly nervous, I’ll use my walking aids, just to avoid confrontation. It’s very hard for me to love my body when it puts me these situations. I feel like my body has failed me. I had always looked after it reasonably well, and now it’s letting me down.
Anyone could have it, you can’t tell by the way a person looks, behaves or learns.
It’s had a great impact on my identity. Before I became ill I was active. From an early age I trampolined, danced, swam, hiked, rode horses. The list goes on. I went to University. I was a theatre technician. I even travelled. I went to Nepal for 2 months, worked in schools. I went on a 5-day hike, I white-water rafted. I had so many plans for my future, for the person I was going to become. Now I have to plan a month in advance for a day trip to London. And although my body has changed drastically since I was galivanting around the Himalayas, my mind has not caught up. I still want to do all those things and be that person. I have hated my body.
I watch films, scroll through my news feed, see the covers of magazines and newspapers, speak to friends. I see a nation of people feeling their bodies are inadequate. It makes me desperately sad. The pressure on my peers to perfect their body goes beyond health. It’s become an obsession. The objectification of bodies means that our ideas of beauty are warped. The media only fuels this further by “Photoshopping” body images and preying on peoples’ insecurities. We keep those embers burning with language and body shaming. When people with healthy bodies feel disgusted by their appearance, it can make self-love for people like me almost impossible. I already have hated my body for physically letting me down. If I pay attention to the message screaming at me about the lengths a healthy person must go to, to be deemed beautiful, I will know I will never be seen this way. Everyone wants to feel beautiful; to be desired, wanted, included. There is nothing wrong with that. We say, ‘never judge a book by its cover’, but I hardly ever see this idiom in action. We take our bodies for granted. To have a body that allows you to do everything you’ve ever wanted is an amazing thing. We must embrace ourselves. I have taken my body for granted. But no more.
The Norwich Radical 