Chronic Illness Inclusion Blog post: It’s not ME, it’s you – can the chronically ill embrace the social model?

[Andy]

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?

http://inclusionproject.org.uk/social-model/its-not-me-its-you/

 

[Samuel]

many people think that is all the social model is saying.

that is /not/ all it is saying!

it deliberately contrasts with the disease model. impairment is downplayed. disease [i.e. "limited and sick and needing treatment" as opposed to only "limited"] is extremely downplayed and usually ignored as if it did not exist.

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i believe there are better ways to demand accommodation.

like demanding accommodation directly without a superstructure of a social theory that excludes many pwd from the disability movement.

 

[Esther12]

Looking at the history of disability rights, whatever the problems with the social model it seems that it's been politically useful.

 

[alktipping]

social model sounds good but remember many right wing politicians believe there is no such thing as society . margeret thatcher was quoted as saying/believing this . politicians with similar views know divide and conquer strats will get them of the hook for short periods of time so todays problems are left to the next government/generation constantly spinning the media narrative into blaming the next minority for its failings and the failings of previous governments.

 

[Dolphin]

An observation I have is that in Ireland anyway some people with visible disabilities get dozens of hours of personal assistance to allow them not be that disabled by their disability e.g. the Leaders programme, yet people with chronic illnesses such as ME can struggle to get one or 2 hours a week of personal assistance or home help (many are given no hours). Resources do not seem to be fairly allocated.

Society probably can't afford to give that big a percentage of the population dozens of hours of personal assistance if too many people are deemed eligible. Resources are limited. Often the social model seems to be described in a way that suggests that there are infinite resources to allow people not to be disabled.

Similarly with work, it's all very well saying employers should accommodate people with chronic illnesses who may not be reliable in terms of getting the work done and who may go out sick. But most work effectively has deadlines. So it's not necessarily practical or realistic that everyone would be employed.

 

[NelliePledge]

I’m opressed and excluded from society because society won’t invest any money into biomedical research that could find ways of modifying my illness so I have enough physical and cognitive energy to participate in employment.

I’ve had reasonable adjustments from my employer for the last 3 years and I’ve been advised by a specialist I saw privately that pushing myself to keep working my 40% of full time hours would be counterproductive to my health.

The barrier isn’t my employer.

I have a season ticket to a football club and I missed a lot of matches last season. In an ideal world I would have a sofa to lie down on and I could be beamed up Star Trek style so I wouldn’t have to travel. Both would save me a lot of energy and I could go to more matches. But I still wouldn’t get to all of them because of pain flu type symptoms bad throats swollen glands.

 

[Webdog]

I’m opressed and excluded from society because society won’t invest any money into biomedical research that could find ways of modifying my illness so I have enough physical and cognitive energy to participate in employment.

For many others, it's also a matter of society not investing any money into biomedical research and doctor training that could help with diagnosis. 90% of those with ME/CFS remain undiagnosed in the US,.

For example, I could have definitely worked more years (part-time) if I had been able to ask for accommodation at work. But you can't ask for accommodation when there is nothing diagnosed to accommodate.

 

[NelliePledge]

For many others, it's also a matter of society not investing any money into biomedical research and doctor training that could help with diagnosis. 90% of those with ME/CFS remain undiagnosed in the US,.

For example, I could have definitely worked more years (part-time) if I had been able to ask for accommodation at work. But you can't ask for accommodation when there is nothing diagnosed to accommodate.

Yes extremely good point @Webdog if I had known 10 or 12 years ago and could have stopped work travel, long working days, also critically being accepted that sick absence would be inevitable. I know someone else in my organisation who has had diagnosed ME as long as I’ve had it but I was undiagnosed until 3 years ago. He has had a some spells in that time when he’s been away sick for 3 or 4 months. And a longer spell too. I had one 6 week absence until 3 years ago. He’s still working full time and in fact got promoted.

ETA Ive never discussed with him but I think he had acute onset whereas I had gradual onset. I feel some kind of biomarker is the only way gradual onset people are going stand a chance of getting diagnosed at a relatively early stage.

ETA2: I did have a lot of short periods of sick absence -up to 3 weeks but no long spell of convalescence