From “sick” to “disabled”: my own journey

Catherine Hale looks back at how half a lifetime of chronic illness slowly changed her understanding of “disability”.

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.

Click here to get involved.

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13 thoughts on “From “sick” to “disabled”: my own journey


  1. Wow, that resonates with my disability on a massive scale. After developing a chronic disease, that I was always genetically predisposed to enduring, I eventually accepted I was disabled and always will be.

    It’s a degenerative autoimmune disorder, that causes a shed-load of pain. That in turn necessitates I take high doses of opiate based pain meds. Not only am I living with the disease, but the associated crap that comes with the huge doses of Oxycontin (that’s a whole other topic though). It means that I’m housebound more often than I’m able to venture out, and trying to include myself into the everyday society that able bodied enjoy can be a great chore. That doesn’t stop me trying though, and I’d encourage anyone else suffering as we do – to include themselves in life.


    1. Hi Charlie thanks for your comment. You are right, it is such hard work striving to be included in society especially when people can’t see the effort it takes us. I hope you’ll join our mailing list and keep in touch. Best wishes,


  2. Many congratulations with this very important project Catherine.
    I’ll be sure to raise the profile as often as possible, starting today with my reply to the Minister for Disabled People.
    Looking forward to watching the project grow in the months and years to come. At last, those of us with a chronic illness do have a voice.
    Well done you. xx


  3. I have campaigned as energetically as any chronic ‘spoonie’ can since the turn of the millennium having been incapacitated following a RTA in 1991. Try to rehabilitate myself back to work was not helped by a restrictive, oppressive, inflexible regime of benefits and healthcare.
    I hope this is going to turn into something. I know disabled people trying to run their own organisations is difficult because we fluctuate from day to day and commitment is hard but able bodied people just don’t get it no matter how well intentioned.


  4. Hello Catherine,

    Your description of your attitude to life is very interesting. I’ve had ME for 11 years and 3 years ago my employers decided they could get on without me. My bosses and co-workers were always supportive because I explained my illness to them and didn’t try to do what I could not. But, businesses need people at work not sick at home; few people with ME manage to hold down a job because of the fluctuating nature and unpredictability of the disease.

    My friends and family have always been supportive [not always the case with families trying to comprehend this “invisible” disability] I think because I’ve always been upfront about it and what it means.

    I’ve never felt sorry for myself, and now spend my enforced retirement reading, listening to the radio, seeing friends sometimes – making the best of what I can do, not lamenting what I cannot.

    best wishes,

    Peter


  5. This reflects so much of my own experience, M.E. is deeply weird systemically and socially. Thank you for sharing this and for your participation in the project. I’m really looking forward to seeing how it progresses and doing what I can to help (already on the mailing list).

    I wrote about some issues adjacent to this for a philosophy/politics site (https://www.liberalcurrents.com/disability-and-invisibility/) and it’s just wonderful to see more people talking about our lives in a constructive, active and positive way. Thank you!


    1. Wow, just had a glance at your article and I’m astonished at how much you’re thinking what we’re thinking. Not enough spoons to read properly today but I hope to get in touch once I’ve managed to. Thank you so much for signing up and for your support.


      1. I felt the same way reading your post and I’d love to hear from you and help in any way that I can.


  6. Hi Catherine. Good to be with and very pleased you also have Mo Stewart onboard; she’s a huge asset and has published very telling important texts for the community of people with disabilities, especially the history of WCA.

    I have several chronic conditions: Degenerate Lumbar Scoliosis with Stenosis; COPD; Type 11 Diabetes; Osteo Arthritis; Unipolar Depression; Essential Tremor; and Single Sided Deafness. I do though, support the Social Model of Disability – although I have pointed out that it is the tremor alone that now prevents me from playing clarinet and not any sort of ‘social barrier.’

    I have been an activist in disability rights and equality for several years and contrary to yourself, I’m proud to called ‘disabled.’ My chronic impairments don’t limit my activities too much (except from avoiding air pollution which means I choose not to participate in activities in my local city, Norwich. However I do choose other areas and for example, I’ve just been elected as a Public Governor at a local hospital. I will make sure CHIIP is known as widely as possible.


    1. Thanks for posting Mike. I’m proud to be called “disabled” too, although it took me many years to reach this position because for a long time I equated the word Disability with impairment. And then when I discovered the social model of disability I wondered how much I would find in common with other disabled people with different impairments than mine. Barrier removal and access provisions make a only a relatively small difference in enabling me to participate in activities; my impairments remain the biggest barrier. Yet the social model has been hugely liberating for me, if largely on an emotional and psychological level.


  7. Hi
    As a 25 year veteran of this disease, what you said makes sense to me. Signed up. I want to be included !

    Best wishes

    Samantha


  8. I have recently found the project through twitter and joined the mailing list.
    Making my way (slowly- ME brain fog) through the posts and finding it all very interesting. I especially identify with your article as I have a few friends who ask how I am now (“feeling better?” after a few months missing), where they obviously think I am still “ill” because I haven’t identified myself as “disabled”.
    Does that make sense?….sorry, brain thoughts tangled into knots today.

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