‘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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Housebound – a guide to self-isolation

If this is your first time having to live almost entirely in your home, it’s going to be difficult to adapt – but there are things you can do to help, writes Victoria Clutton

I’m a chronically ill person who has lived alone and been mostly housebound for the last 24 years.

It’s not easy.

I’m hoping this guide helps you deal with the emotional impact of social distancing and spending more time at home.

This guide is structured around five issues you’re likely to run into, with strategies for dealing with each. These are:

  • Issue 1: lack of structure
  • Issue 2: extra negative emotions
  • Issue 3: isolation and quiet
  • Issue 4: feeling trapped or claustrophobic
  • Issue 5: feeling stuck or purposeless

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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.

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