It’s not ME, it’s you – can the chronically ill embrace the social model?

Leonora Gunn discusses society’s role in improving the lives of the chronically ill.

The big idea of the social model is to distinguish between ‘impairment’ and ‘disability’: ‘impairment’ is someone’s condition, ME (myalgic encephalomyelitis, or ‘chronic fatigue syndrome’) in my case, whereas ‘disability’ describes the way that impaired people are oppressed and excluded from society on top of their impairments. This challenges the assumption that disabled people need to be ‘fixed’ or changed to fit in to society, and suggests that society needs to be changed to include everyone.

This might seem like a funny thing for someone like me, with a chronic illness, to believe. Surely illnesses, like ME, need ‘fixing’? And how can it be society’s fault that I am ill?

Well, it’s worth knowing that the social model wasn’t really created with chronically ill people in mind. The creators of the social model were ‘visibly disabled’ – people with sensory or mobility impairments. Having a visible impairment often means being pitied, and assumed to be helpless. Visibly impaired people can be going about their day normally, and someone will patronisingly tell them that they’re being ‘inspiring’, because it’s assumed that they must always be struggling with everything. For as long as they are seen only as tragic sufferers, their social exclusion and oppression are seen as inevitable.

On the other hand, my chronic illnesses are invisible, which means they often aren’t taken seriously by others. It’s assumed that we’re lazy, that we should be able to pull ourselves together. So we are often fighting a desperate battle to make people recognise our struggles to do everyday things. The same narrative that is so oppressive for visibly disabled people can be liberating for the invisibly chronically ill.

In spite of this, I still embrace the social model. I don’t think that this means rejecting the reality of my impairment, nor does it mean that I should reject all medical treatment or research into ME: all the social model asks us to do is to address the socially caused problems that we face on top of our impairments, and surely we can all think of plenty of these! Often public transport doesn’t have enough seating for those of us who can’t stand, those of us with little energy can have to struggle up stairs when there are no lifts, bright artificial lighting can be extremely painful for many of us, and just think of how many public places don’t provide places for people to sit and rest. Let alone how impossible it can be to get employers to make adjustments – many of us could work, and want to, but need to work part time, or need more ‘sick days’ to take off when we hit a bad patch. There are many, many ways that society is constructed only for the able-bodied, ignoring those of us who aren’t able-bodied, but who have every right to be a part of society too.

In fact, even the way that our illnesses are disbelieved could be understood as ‘disabling’ on the social model – it’s something that excludes and isolates us that is unnecessarily imposed on us on top of our impairments! In order to get the help and support that we need to live, we have to put on a performance of misery. If we look too happy, then we can’t be ill, we must be pretending. This isn’t a necessary part of our chronic illnesses, and think how much better our lives would be without it! Having to seem miserable, even when we’re having a good day, makes our lives much more miserable than necessary.

Maybe we all agree that our lives would obviously be better if we didn’t have chronic illnesses, and this might divide us from many disabled people, who may think that, at bottom, they are just different, and they don’t want to be cured. But whether we would really prefer not to have our impairments or not, we can still embrace the social model.

All the social model does is encourage us to point to aspects of our struggles that aren’t only the result of our impairments, and to demand to have them changed. We don’t just have to wait for medical advances for our lives to get better, because a lot of what makes our lives bad are things that society does to us. The onus shouldn’t always be on us to be ‘fixed’. Society needs fixing too. Surely this is a message we can all embrace.

Leonora is an MA Philosophy student at the University of Leeds, with a particular interest in the philosophy of disability and the social model. She is engaged in disability activism, and is currently involved with other disabled activists in creating a pan-impairment Disabled People’s Organisation in Leeds