Category: Energy Impairment

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

CFS, Chronic Illness, ELCI, Energy Impairment, Energy Limiting Chronic Illness, ME, Social Exclusion

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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On not being believed

Chronic Illness, Chronic Pain, Disability, DWP, Energy Impairment, Energy Limiting Chronic Illness, Mental Health, Systemic Disbelief, Wheelchair

Wheelchair Vista on the lasting effects of being doubted.

Many of us with long term conditions struggle to accept that we can no longer live life as we used to. It took me almost ten years.

I carried on working for longer than I should. A resident at the care home I managed said; “It’s doing you no good keeping on working. Why don’t you reduce your hours or stop altogether?” She saw that I could not stand for long without leaning against a wall. Staff noticed that I always relied on the lift and was often in urgent need of the loo.

When I had time off work for minor surgery it had to be extended due to massive bruising sustained in a car crash. This was soon followed by investigations for IBS and a referral for knee surgery, which culminated in my employment contract being ended.

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Chronic Illness and graduation

Chronic Illness, Education, Employment, Energy Impairment, Energy Limiting Chronic Illness

Rebecca Boot tackles the painful subject of employment for the chronically ill.

I’m back at university, studying again after my body threw a fantastic tantrum the last time I tried it.

My university has a real focus on employment and one of the highest graduate employment rates in the country. That is great, everyone wants to be able to get a good job when they leave university right? Isn’t that the point of going?

Not really, not for me at least. I applied to Uni because I love learning and my brain likes to be busy.

But here’s the rub – I am not employable, not really, not as I am now. I have plenty of skills, I am smart, I’m a self-starter, I have a whole bunch of somewhat impressive things on my CV, I meet the person specification for a whole lot of jobs already. But I’m not employable.

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Accessing Support: A system geared toward physical impairments

Brain Fog, Chronic Illness, Disability, DWP, DWP Benefits, Education, ELCI, Employment, Energy Impairment, Energy Limiting Chronic Illness, Social Care, Wheelchair

Sarah Campbell asks whether chronic illness needs its own set of responses to social security, employment and social care.

I have a combination of both a chronic illness and a progressive muscle condition, offering me insight into both “worlds” of invisible fluctuating illness and visible physical impairment. Some issues are extremely different while others are shared. But so far I’ve found that accessing support is often biased toward purely “traditional” physical impairments.

As a wheelchair user, there are many access barriers ranging from getting an adequate wheelchair in the first place, to housing, transport, social care etc. But the law is generally on our side, precisely because disabled people fought for those rights over the past decades.

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

Brain Fog, CFS, Chronic Illness, Disability, DWP Benefits, ELCI, Energy Impairment, Energy Limiting Chronic Illness, Housebound, ME, Social Model of Disability

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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