I’ve had plenty of feedback over the months this blog has been running, mostly from people like me, with disabilities or chronic health problems. It has been reassuring, gratifying and in many ways surprising to have been so validated by so many people, because I really did start writing this feeling like I was one of a very small minority who felt this way about their disability. I’m rapidly having to reconsider this. There would seem to be a lot of unspoken complexity around disability and people’s relationships to their conditions and bodies.
Because this is unspoken, I’m very conscious that when I write, by putting these things out there, I put a lot of people in a difficult position. And a lot of those people are parents or carers for disabled children and adults. I’ve done a lot of thinking about why I feel this may be difficult, this is one of my ideas…
Here in the UK, it is noticeable to me just how much of a dogma the social model of disability has become. The idea that disability comes about, not so much from the initial condition and diagnosis, but by societal and cultural barriers that once broken can lead to an equality and disabled people having the same chances as everyone else. Now, I would argue that this model, that has incredibly strong areas, does nothing to address impairment or provide ways to talk about it and how we feel about it, but I do not want to throw the baby out with the bathwater here. The social model is an incredibly important piece of the disability rights movement and an incredibly useful tool to explain so much about prejudice both overt and latent. It does a huge amount for empowering all types of people in a society that doesn’t always fit them. I have problems with it, partly for the areas that it does nothing to address, but also for the way that it is taken as read by many disabled people that as a disabled person, I accept it and agree with it. Pick holes in it, and one has to be incredibly careful about wording or risk upsetting people. Now I’ll admit that some of this disagreement with the model comes from internalised ableism, but it’s not good enough to simply disregard this and devalue it, that needs to be addressed – and I’ll do so in later entries. But for all the reduction and removal of barriers, there will still be things that I cannot do in the same way as an able-bodied person, because my body has very stark limits on it.
That realisation comes with a certain amount of pain, grief and loss to it. For all that my life is a wondrous kaleidoscope of experiences, part of that rich tapestry is that pain and feeling of otherness. And I think the disability community needs to allow for that. When I first started working with my therapist on my feelings about my own body, she asked if this might be something of a death anxiety. I was able to say with some certainty that it wasn’t, but the question led to something of a revelation. I speculate that so much of the reason why people find the social model so valuable is because it negates what I’ll term birth anxiety.
Birth anxiety. A question of regret, a question of ‘blame’, a question of altered expectations. There’s a huge amount of uncertainty for parents and families when a disability is discovered or diagnosed, what does it mean? Has anything changed? What do we do now? And I reckon unspoken in many cases, Did we do anything wrong? We now, at least officially in most of western culture, live in a place where there is nothing inherently wrong with disability. It is not a question of fault. And it should not be. But I think that cultural memory is longer than a legislative order, and so it will take many more decades for that last question to go from unspoken to completely unthought. We may now be OK with the idea of disabled people as equals, but we still have that cultural memory of the disabled as vegetables, as lesser, as people that were put away in institutions and unseen. Go further back, and you can add the idea of the negative judgement of a deity to that memory bank. We may no longer believe these views, but their imprint has not yet entirely faded.
Therefore, a social model which places an entirety of the blame on societal oppression and prejudice takes this question out of the picture – and therein lies a huge part of it’s value. It shields parents and families from any of the blame. Just to be clear, that blame shouldn’t be there anyway, but if the human brain was rational enough to realise that entirely, I probably wouldn’t need to be writing this! One of the reasons that I always feel somewhat nervous when I write anything that takes a view that isn’t very social model-esque, is that I worry that I’ll disturb that ‘birth anxiety’. The idea of fault. Because by these negative aspects of disability remaining unspoken, we seem to be trying to convince ourselves that they’re not there. I often have a sense of something akin to being a class traitor when I raise my head above the parapet to give an inconvenient view.
So what to do about it? I genuinely don’t know. I think the social model is incredibly valuable, especially for young children who can be given so much empowerment and independence through it and I don’t want to remove that. But we need to acknowledge the birth anxiety too, if only so that we then may move past it. Too many people – especially outside of disability circles – seem wedded to the social model as a way to make disability acceptable. I would like to see that social model expanded, to a place where we can talk about the negative experiences within disability, without fear, without worrying that we’ll be seen to be blaming anyone, or feeling self-pity. Where impairment is merely a fact of life that is seen for what it is, rather than as something to be denied or lessened by putting the ball back into society’s court.
Maybe, like death anxiety, a birth anxiety about disability is to some extent a part of the human condition. And maybe the best thing to do is acknowledge that.