Last week I saw my professor for my annual ‘General Marfan check up’. This is an awkward way of saying that he is making sure my organs are still holding themselves together and that my aorta isn’t about to tear itself in two, unwanted paper disposed and forgotten . Talk turned to the latest research in Marfan Syndrome and he offered his belief, almost by way of apology, that one day, they might find a cure for people like me. It just wasn’t going to be today.
I threw my hands up exasperated. “People with illness and disability are always saying ‘oh I wouldn’t change a thing’. And that’s great, like good on them. But if you find me a cure tomorrow, I’m taking it”.
He smiled, without missing a beat. “That’s because, the truth of the matter is, you don’t actually enjoy your illness at all”.
It had taken 9 years of being severely symptomatic with my syndrome (Who knew that disease could alliterate so well?), but finally, someone got it.
Another two moons after this appointment, I read an article by Gavin Fernando on news.com.au (Don’t judge me. I’m already judging myself for my cheap news fixes). It was entitled ‘I’m not proud to be gay’. Before you allow yourself to become enraged, as I first did, first understand what it is he is really saying. Gavin dared to explore a concept that few others do, at risk of appearing homophobic or self loathing. Gavin is not in a cult, and he is not somehow trying to deny his sexuality, or even claim that it is something he is ashamed of. He just doesn’t believe in taking pride in something that is completely biological, something that was never a creation of his own hard work. Gavin wrote;
“Why should I feel ‘proud’ to be gay? The concept is as ludicrous as feeling ashamed to be gay. We’re proud of our achievements and goals; we don’t congratulate ourselves over things we didn’t control. I’m not proud to have black hair or relentlessly ethnic eyebrows. I just do.”You can find the link to Gavin’s full article here http://www.news.com.au/lifestyle/real-life/mardi-gras-2015-im-not-proud-to-be-gay/story-fnq2o7dd-1227252721752
It was with these words that I realised I am not actually proud to have a disability.
There we go, I said it. You can pick your jaw up off the floor. I have a golden retriever, the floor is covered in fur, so trust me when I say that you don’t want to let it hang about down there for too long.
In the disability community, to express the belief that you are not proud to have a disability is akin to selling your first born daughter on Ebay because it’s somehow less desirable than birthing a son. It’s just not the done thing. The disability community is one that I enjoy being a part of. I have many friend’s who, like myself, are very outspoken within the community. We demand equality, accessibility, recognition and the right to the same opportunities as our able bodied counterparts.
But this is different to taking pride in something that I actually never had a say in. Marfan Syndrome is the result of either inheriting the disorder from a parent, or a spontaneous gene mutation. The spontaneous gene mutation always makes me think of a really opportunistic genome shouting ‘YOLO bitches’. But I digress.
For me, to take pride in having a disability is opportunistic at best, and downright grandiose at worst. I had no say in the matter. When my parents were horny twenty year olds and conceiving me (This is a story they take great pride in sharing whenever I have friend’s over), they did not, mid coitus, give a shout down to their genitals and say “Okay Jess, and future favourite child. So how are you going to go about developing the skills to successfully acquire a disability? What is your game plan?”.
Similiarly, when I was thirteen years old, I didn’t start studying or working out everyday so that I could develop the severity of the condition that I did. There was no hard work or perseverance or skill applied to the development of my condition at all. I was just the weaker link in the biological chain, plain and simple. To take pride in the mere fact that you have a disability somehow suggests that you are in some way stronger, more resillient, more intelligent, ambitious or somehow a better person, simply because of the fact you have a disability. I am a firm believer in equality, and disability is not exempt from this. Just like everyone else, those of us with disability can be fantastic and motivated, talented people. We can also be cheats, liars and outright scumbags.
Of course, to say that you are not proud to have a disability, it is believed that what you are actually saying is that you are ashamed to have a disability. This could not be further than the truth. Just as I will not take pride in something that I had no say in, and showed no skill or achievement towards, I will not feel shame for something that was merely a product of inheriting faulty fibrillin from my parents. I am in no way defective, or somehow a lesser person because I have a disability. My body just doesn’t work like other people’s, that’s all.
But whilst I am not proud of the mere fact that I have a disability, I am infinitely proud in the way that I live my life with disability. My life is a difficult one, and there is no denying it. I live with chronic pain, chronic exhaustion, infection, weakness, nausea and vomiting every single day. And that can be a good day. It would be so much easier to curl up in a ball and say ‘You know what? Fuck this. I’m just going to lay in bed and use Tumblr for the rest of my life. Cause this is too damn hard’. And sometimes I wish that I did make that choice. Other people with illness and disability make this choice, (as do able bodied people). But that’s not me.
I am highly successful in my chosen path of psychology, I run a not for profit, I blog and freelance write. In 42 minutes I will have a job interview. I have the mother of all infections courtesy of my bodies ability to fight off more than a wayward fart from my brother, and I can’t stop shaking from fevers. But I really want this position, so I’ll do it. Admittedly, my voice sounds as though my balls have dropped. But you win some, you lose some.
I am proud of the fact that where others shy away from their differences, I accentuate my impossibly long limbs, I utilise my experiences, and I manipulate my physical weakness to become an intellectual strength. I am proud of the fact that I can take downright shitful circumstances, and make it work for me. I am proud to belong to a community of people living with disability who share the same attitudes and values, and that together, we are speaking out to make this world a better place for people with disability.
I just won’t take pride in the fact that I have a faulty genome.
Because there is a lot more to me than that. And that’s the stuff that I am truly proud of.