I am a disabled person.

You might not know that about me, because these days, I don’t look very disabled.

That isn’t always how it’s been though. And I want to share some of my story with you.

I was born with a genetic condition, it’s a connective tissue disorder that means I’m not held together very well. It differs in each person, but for me my joints are all very unstable (sometimes popping out of place, or even dislocating totally), they cause me pain and make my mobility really difficult. I also have serious complications internally too, the condition means my swallow is floppy (I choke on fluids, and they drip into my lungs), my lungs don’t always have the strength to arrange breathing effectively, my stomach is too disorganised to sort out digesting foods properly, my bowels are sleepy and hardly move and my bladder can’t let any urine out. The secondary problems I have mean that I can’t manage my hydration levels, nor can I sustain a good blood pressure or heart rate, often leaving me dizzy, dehydrated or just passed out. On top of that, I have limited energy each day, lots of pain and take a host of drugs that make me sick and sleepy.

When my condition first started to effect me, I spent years struggling to manage, stuck in a cycle of boom or bust. Weeks of running around like a ‘normal’ person, followed by weeks in bed wondering if the pain might actually kill me?

As I got older, my walking became much harder to organise, my limbs struggled under the extra pounds I carried, my lungs failed to deliver enough oxygen and I threw up after everything I ate. I was so frustrated with my body. It wasn’t us against the world, it was head vs body, every. bloody. day.

It was exhausting.

Loving a body that ‘fails’ you on such a basic level is really fucking hard. So we just stopped speaking. I stopped listening to her pleas for more nourishing food, for movement where possible. She cried out for no more tobacco, for life sustaining treatments to be carried out with regularity. But I shouted over her. Put music on. Turned the TV up. Ate so much she couldn’t open her mouth to speak. Did anything I could to avoid the conversation I didn’t want to have.

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Over the past five-ish years, I’ve changed the conversation with my body considerably. I started by beginning a dialogue, both with my body, with my then girlfriend (now wife) and with a fucking good therapist.

It started with just wanting a little better for my body. Nothing fancy, nothing complicated, just a little tiny bit more .. just to see, just to dip my toe in the water of life and see how it felt. Because for 5 years, I was dependent on a ventilator, constantly fighting blood poisoning, in hospital for months at a time, unable to balance my mental health and my physical well being. It wasn’t that my mental health caused my problems, it was that it left me in a position of being unable to deal with them and in turn, things just became progressively more unmanageable.

My therapist never challenged me to do anything, and my partner never asked one thing of me, but quickly I felt like I could have a life that looked different to the one I’d fallen into.

As I’ve moved through the last few years, I’ve attempted to listen to my body in a way I simply couldn’t before. You have to understand, the pain I feel isn’t warning me that something awful is about to happen, or that I’m injured in some way – unlike most people who would probably take themselves off to the Dr or hospital if they suddenly felt terrible pain, I’ve experienced years of it, I have just had to switch off in order to carry on living. My bladder doesn’t tell me I need the toilet, it instead creates intense spasms that bring tears to my eyes and cause me to leak urine, these are particularly difficult to ignore but also provide no relevant information for me. I think you get the point I’m trying to make. Being in tune with a body that sings almost exclusively out of tune can be painfully unbearable.

Focusing on a body that doesn’t live up to your expectations makes it so hard to see past negatives. How can you possibly feel beautiful when your body is useless? I’m sure you can understand why ‘faulty’ soon became ‘fat’, ‘useless’ soon turned into ‘ugly’, my functionality becomes my physicality.

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On top of however you may feel about your own body, we have to consider how the outside world reacts to YOUR body. As a person who uses the medical system often, my body is talked about and treated like a carcass on a  conveyor belt. You never forget the first time a young doctor forgets to introduce himself before putting his hands inside you. And then there are the strangers, the guys in the pub who think you’re ‘beautiful .. for someone in a wheelchair’, or who ask ‘what’s wrong with you’ before they ask your name. Your body is suddenly everyones business, doctors get opinions on you, people on the street get to comment and ask about you.. it’s hard to feel positive about something that other people seem to have such an objection to. And let’s not even get started on how it feels knowing that over 40% of people would still abort a disabled baby…

So how easy is it to move into a body positive space? To learn body acceptance, self love .. even compassion?

Well the answer is challenging. Especially when many members of the body positive movement don’t quite understand the issues that disabled women face. And on top of that, many of the less well educated bloggers talk LOTS about how to stop focusing on your physicality and start focusing on what your body can do, what your health gives you, how ALL BODIES ARE GOOD BODIES. But that actually isn’t true. My body doesn’t really live up to anyones idea of a ‘good’ body, but it’s my body non the less and it is just as entitled to love, respect and compassion as the next body.

I think eventually the only freedom comes in not expecting ANYTHING of a body. I have had to stop looking at other people and thinking ‘my body can’t do that’, or ‘I don’t look like that’ .. and the aged old ‘I wish … ‘ (fill in the blank with any number of bullshit things I’ve wasted wishes on in my lifetime.. smaller thighs, bigger tits, smaller waist, to be taller, I mean I could go on..) There is something truly powerful in the surrender into ‘I have no power’, perhaps I’d even go as far as to say there is something spiritual in it.

Perhaps as a community we are still setting ourselves up to fail by introducing more narrow constructs to live by. We talk about loving ourselves, or hating ourselves, we are stuck in extremes, it’s either good or its bad. Normal or broken.

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Body positivity is a journey. It will ebb and flow like all relationships do. It’s not an ‘on it’ or ‘off it’ thing, there will be moments of the day that feel easier than others. The compassion I talk about means that I don’t beat my self up when I *do* have an awful body day, and it helps me celebrate good body days. And in the mean while, I focus on what my body does give me, not in terms of physical reward or physicality, but in terms of an ability to be with my wife, to share friendships and love, to be present in life where possible. That, in and of its self, is pretty fucking wonderful.

This post was inspired by the incredible Michelle Elman

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One thought on “Not all bodies are good bodies..

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