Chronic Illness Inclusion Project

Chronic Illness Inclusion Project

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From ‘sick’ to ‘disabled’ - my own journey

Catherine Hale considers how half a lifetime of chronic illness has changed her understanding of the term ‘disabled’.

I’ve been sick for nearly 30 years. That’s the whole of my adult life. I always thought of myself as ‘disabled’ in the sense of being very incapacitated. During my bedbound phase I couldn’t wash, feed myself, go to the toilet or write my own name; nor could I read, watch TV or have a conversation.

But I never thought of myself as ‘disabled’ in the political sense used by the disabled people’s movement. That is, I never thought the disadvantages I suffered in not having a job, a career, or a social life were due to an infringement of my rights. It didn’t make sense to blame my profound isolation on other people or organisations excluding me unnecessarily or treating me unfairly.

This social model of disability says we’re disabled by society, not by our bodies. It didn’t seem relevant to me though. There was never any question to me that my defective body was the prison of my spirit, my ambitions and dreams.

That doesn’t mean I accepted my fate passively. Like a weed trying to grow through a crack in the pavement, I strived to make my housebound existence meaningful. But what kept me going in the darkest of times was not hope for greater equality of access to the society, it was a blind and unquenchable determination that I would recover, or at least see improvement in my health. The vision of a time when the symptoms would ease their grip and my adult life would finally begin always seemed tantalisingly just around the corner.

A few years ago that began to change. Ironically, it was during a period of relative good health that I began to experience disability in its social and political sense.

Around 2010, the longed-for improvement miraculously materialised (dear reader, it did not last) and I tentatively branched out into the world, volunteering part time for a local charity. I could do most of the work from home when needed, but what really gave me a buzz after my years of solitary confinement was going to occasional meetings and interacting with other people.

So when I had a bad day, week or month and couldn’t get to meetings my heart sank. In ever greater desperation as the bad days outweighed the good, I explained to my co-workers that once again my health had let me down. “Please don’t think me lazy!” was the subtext of my apologies and cancellations.

The people in the organisation were kind. Each time, they said “Don’t worry, rest well and hope you feel better soon.”

That’s when I realised that as long as I thought and spoke of myself as ‘ill’, the best response I could hope for from other was to be excused for not participating. But I’d been ill for 25 years. The life ahead of me would be a Groundhog Day of Get Well Soons and the world would keep turning just fine without me.

That’s when I realised I wanted more than to be excused. I wanted to be included.

Finally the penny dropped. If I wanted people to go out of their way to change things so that I could be more included, I needed to radically change my mindset. Stop heroically trying to pretend to be normal, and then desperately apologising for being ill. That’s when I began to explore the social model of disability.

My illness and its symptoms are as restrictive as ever, but is there a dimension of my exclusion that is socially created?

How much is other people’s attitudes to illness - even the benign Rest and Get Well Soon version - holding me back from fulfilling my potential?

How much was my own recovery-obsessed mindset holding me back from demanding that society accept and include me just as I am?

And if I were to identify as disabled, what ‘reasonable adjustments’ could I expect and how much of a difference would they make?

I don’t have all the answers. But I can tell you that the journey itself is incredibly empowering.

It took me nearly 25 years to let go of hope of recovery and start demanding that people accept and include me as I am. Now I want to help build a movement that empowers others to do the same.

Catherine is lead researcher and project manager on the Chronic Illness Inclusion Project. Catherine has worked as a policy researcher with Mind, Action for M.E., the Spartacus Network and Inclusion London. She has a keen interest in researching service users’ experiences of government policies as a tool for campaigning for change...Read more.