The above is a quote I read in Disability Visibility. It voices so well what I have struggled for so many years to articulate about my feelings about my disability.

The medical model of disability looks at an imperfect, often perceived broken, body and aims to “fix” it, to make it function as everyone else’s does and therefore be more acceptable. That’s the part the world sees. It sees professionals try to eliminate or at least lessen physical struggles.

But what it doesn’t see, and I often wonder if it’s because it doesn’t care to, is the emotional toll of living in a body that doesn’t respond to the messages you send. It is a neverending frustration.

There was a discussion within the anthology about whether disabled people would want to be fixed, made normal. Until this very year, I would have unequivocally have said yes. But only for me, I do not speak for anyone else. But I find the notion of disability pride utterly confusing and honestly, quite vexing. This is not a body I chose, nor would ever choose, but the truth is, it is all that I have, so for this lifetime at least, that is that.

I often wonder how different I would be were I not disabled. I go to the extremes of my current capabilities. I think I would be a couple of inches taller, because I wouldn’t need to thrust my body forward in anticipation of falls. I’d have the balance to go out dancing in high heels and my feet wouldn’t hurt. As it is, my feet are misshapen in all possible ways and ache every day in the most sensible of shoes. So if I were “fixed”, I would want to be a taller. stylish, more confident woman, with the coordination to dance and the belief she could be physically attractive and dare I say it, even have some sexual confidence, just because.

Of course, I do not know this is what I would be at all. It is imagined in fantasy. But I think that’s the point. Waking up in this body each day means I have to accept – or at least acknowledge, because bloody hell, acceptance is a hard one – that there are things I will never be, or be able to do.

So, as I am, I hate high heels. I look on them with scorn, because I can see how much they damage those who are fortunate enough not to have to consider omnipresent pain in their feet before they put shoes on. I look at squeezed toes and wince.

But this is the vain side of my grief. It is no less real, but I can just about deal. I can work on my confidence, Somehow. Because let us not forget that ageing with CP is no joke. The damage is done and static now but symptons are progressive. They catch me unawares and rob me of my little, hard-won confidence. They began for me when I was barely 21 and my first relationship was fledgling, when I should have been feeling my most confident and brave. I was living in a large city and could have been living my best life. But I felt unable to face people, because I would have to explain my obvious differences before I got to introduce myself. I was never myself first. I was not out dancing, neither figuratively nor literally. My early 20s were not the time of exploration and self discovery all young people should rightfully expect. I simply did not have the energy or the self-belief to live them as I have seen others do. That is grief.

There are so many moments throughout the life span that many able-bodied people experience without even thinking about it. It just gets to be. I envy that so much

(Note, I have not said all, I am very aware that able-bodied people have tremendous trials too, but this is not about individual characteristics, it is about the attitudes of society at large).

There are real experiences that I have been robbed of, that might have helped craft me into a person it would have felt more tolerable to be all these years.

I am a child of the 90s who was not allowed to play out on the street with my neighbourhood friends lest I fall. I wish I could say I felt precious but I felt imprisoned and lonely.

I wasn’t allowed to ride my bike to the park because I couldn’t be taught how to ride. I never got praised for trying to climb the play equipment there, only shouted down. I never got to climb trees.

As a teen, I was not allowed to head into town shopping with my friends. I was home, alone and lonely, unable to forge those vital social connections that help your sense of self emerge.

Carrying my daughters to bed for example, flinging them up in the air to play. For every parent, there is a last time they will pick up their babies, I fear my time, with daughters aged almost 7 & 3, has already gone, but I can’t think on that too long. Even just typing these words now, there are tears in my eyes.

I will never get to experience a peaceful, well understood pregnancy. My time is gone. These are my years that can now never come.

I know there are many things to be grateful for in this, my life.

But just for a moment, let’s give voice to the fact that as a child who was struggling to reconcile her struggles and physical differences against her entirely able bodied friends, was told not to be so self-pitying and to be grateful I could walk at all. Often, I was laughed at when I fell, rather than helped and soothed. I think these choices were made to toughen me because society didn’t see my struggles, only the fixes that should make me stronger. But oh my God, it was so lonely, because I was not given any avenue to express my confusion or sadness that I wasn’t like everyone else. I felt mocked and ignored.

So actually, it is important to grieve the high heels I can never wear, or the fact that I never had the energy to go out dancing on Saturday nights either. It is important to release the unfairness, the sadness and confusion so that it cannot, all these years later, implode in my chest. It is vital to be able to express my personal unease at disability pride. I am not proud. I have been cheated.

But as I said, this is the only body I get and it has worked at its best for me for so long. I regret not being aware of this sooner, because I am the one who can feel it wear within me. Cold of the seasons gets into my joints like I am a woman some 30 years older. All I can say, not that I  need to be in my own defense, but here I stand nonetheless, is that I am, as ever, doing my best with what I have and I am only just now getting to grips with who I am. The disability I have comes second, though I am much more committed to understanding that now too, so that we might live in harmony rather than at war with one another as we have done for all my 34 years so far.

(Here, there needs to be a reminder that I have not yet heard from my GP for a gateway referral to a neurologist for the first time ever, so that someone with the knowledge might actually explain my physical self to me in a way that I might understand.) 

So whilst, with intense therapy and commitment to emotional exploration, I am looking to move forward feeling much more positive with my lot, please do not mistake this for pride. I am proud of myself, not of the burdens I carry. I need to find peace with them, but that is not pride. There is much I can never be now. I accept that the flip side of that coin is that there is plenty I can still be, which is exciting, but I am not someone that will ever cheapen my experiences, or lessen my pain at what I can never now live because of a body, a brain I did not ask to be born with.