‘Reclaiming’ Chronic Illness

Our Director Catherine Hale and Anita Ruddock recently took part is an event organised by the School of Health Sciences at City, University of London.

These events and seminars provide a platform for academics, practitioners and service users to discuss developments on best practice and help promote social inclusion for disabled people and others at risk of social exclusion, through research, teaching and consultancy.

You can watch the event on YouTube

 

It’s Our Community

Catherine Hale spoke at It’s Our Community, a conference on social care reform. Catherine explained the high prevalence of energy limiting conditions and the psychological impact of not being believed.

I was a social care user back in the 1990s. I’ve had my chronic illness for over three decades and when it was really acute, and I couldn’t wash feed myself, or go to the loo, I had a care package. But later years when things were less severe, my needs were harder to grasp because my impairment was invisible and poorly understood. The social care system completely let me down. As a disabled lone parent I had no support.

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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?

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Sorry

Patricia de Wolfe is tired of saying ‘sorry’ on account of her energy-limiting illness.

I’m sorry. I’m really sorry.

Sorry I can’t make it to your birthday party, your family gathering, your funeral. Sorry, no, I can’t come over for tea on Friday. Why? No, I’m not doing anything else. But I’m going out for lunch the Tuesday before. Yes, I know that gives me Wednesday and Thursday to recover but Friday would still be pushing it. And tea is a bit late in the day for me. Yes, I am sure. Perhaps we could meet next week? Yes, I know I cancelled last time. Yes, of course I understand you’re very busy… Sorry.

I want to stop apologising. I want to stop explaining. For me, inclusion would mean, at the very least, living in a society in which it is generally accepted that some people are ill. Chronically. Perhaps permanently. And in which we are not regarded as freaks, or hypochondriacs, or scroungers, or, for that matter, just “poor things”, but as people valiantly trying to cobble together something that feels like a life in the teeth of gargantuan obstacles.

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