The older I’ve gotten, trying to discover the Cerebral Palsy community for adults in the first instance and then trying to find my place and understanding within it, I have realised that I know very little about my own condition.

My teenage niece, who is able bodied, recently had Botox injections. My sister asked if I knew anything about them. All I could tell her was that knowing the muscle paralysing treatment came via an injection was enough to mean that I, a needle-phobic since I had an operation on my Achiles tendon aged 6, was not interested in the prospect of its benefits at all when it was offered. I can’t help but think with the benefit of hindsight that maybe I should have reconsidered.

But I don’t remember anyone with the required knowledge explaining the benefits in any kind of way designed to get through to a clearly traumatised child.

My sister told me that when the professionals came round to talk about aftercare, i.e. physiotherapy, they spoke directly to my niece, putting her firmly in charge of how her body could respond to the treatment.

The model of disability practised when I was being cared for by the NHS was clearly very medically based. Something is wrong, and this is what I, a professional with many years of appropriate training can offer you to fix it.

But this is why the social model of disability is so vital. I am a person before I am a disability. I have opinions and preferences before I need to be fixed. Being fixed means that as I am, I am wrong. I have spent too much of my life thus far believing that there is something wrong with me as I am and what a horrendous way it has been to live.

The social model practised with my niece prioritised her as a person, her capabilities to care for herself. It led with the much more accurate assumption that as a person she had the choice to prioritise her health herself, rather than relying on others to care for her body.

I am so glad for her, but it makes me reflect sadly on my own experiences within the NHS. Because here I am and I don’t actually understand my own condition at all. Because every conversation about it was directed at my mum. I don’t think she had the capacity to translate the medical jargon herself, or the self-awareness to ask for the translation in the first place, because they were never automatically forthcoming as a matter of course or education of us, the lay people.

In becoming part of the adult Cerebral Palsy community, I have discovered there is a dedicated multi-disciplinary team working out of a London hospital. Which in itself is fantastic.

However, even though I exist, even though I would love to have people with the knowledge explain why/how my brain damage and resulting disability makes my body as it is, for some reason, I cannot self-refer.

I need the referral of a neurologist. Which I suppose is logical given that cerebral palsy is a neurological disability, having resulted from brain damage at birth.

But here’s the kicker, I have never in my life, had nor seen a neurologist. No-one has ever suggested I should see one, or said a neurologist would have any bearing on my care or the life I lived beyond that. And being the child in this scenario, I was naive and completely trusting of the adults around me. I thought it was all in hand.

Except now that I am the adult, and my care is in my hands, I realise that I have been left alone for the longest time. It is not the concern, it is clear, of the medical professionals to make sure that I am educated. Only to be fixed.

When will the NHS system I entered 30+ years ago catch up with the NHS system that is, for instance, caring for my niece, with her self at the centre of her well-being and care? Do I not get to be privvy to the social model because, what, I missed my chance?

The only way I can get access to a neurologist to refer me to the CP clinic in the first place is through my GP. I never see the same one twice, no-one involved in this process even knows my condition, since there’s no time to read notes, never mind knows me. So how long do I give the nameless, faceless GP to find me a neurologist?

Will a neurologist even want/be able to see me for no other reason than to pass me on to another set of doctors? Does there need to be something wrong with me before I’m worth giving an appointment? Experience of the medical model tells me yes, and it makes me so anxious. Because that being the case, the one I anticipate, who is actually listening to me?

I don’t believe (any longer) that I need to be fixed. I just want to understand everything I am as a disabled woman better. There’s nothing wrong with that either.