Earlier this year I was asked by another disabled person “what is wrong with you anyhow?” The person who asked this should have known better as they claim to work from a social model perspective. My obvious response to this was to ignore the question as there is nothing “wrong” with me. I have an impairment and because of the disabling barriers in society this means I am disabled.
Now I have read that Sue Marsh (who writes for the blog ‘Diary of a benefits scrounger’) has been refused DLA in spite of having severe Crohn’s disease.
DLA currently focuses on supporting people to live independently and to provide support for people’s mobility needs. The care component of DLA is a payment to meet the extra costs of being disabled whatever they are, extra food, extra heating, extra clothes, and if you’re an ILF user half of it goes towards the cost of your care and support package anyhow. To qualify for DLA you need to be unable to do certain specified tasks like cooking a meal, or have a need for constant supervision to help keep you safe. These descriptors are very medical model and look only at functional factors while ignoring issues such as you might be able to cook a meal if you had a fully adapted kitchen, or taps that you could actually turn on.
Looking at the purely physical functions someone can do is also unsatisfactory. As much is made of the can you cook a meal descriptor in deciding someone’s entitlement to DLA let’s consider this a little further. One young man with Asperger’s syndrome who has lost his entitlement to the care component of DLA can physically cook a meal but needs support to do this. Another young man with Asperger’s says this functional ability test takes no account of how stressful the tasks are and how it leaves you feeling. Yet another disabled man who loses concentration frequently can theoretically cook a meal but keeps wandering off and leaving food to burn.
For anyone with a fluctuating impairment it is impossible to get as you have to have these needs constantly for 3 months and be likely to have them for at least 6 months before you can qualify.
As I too am disabled not just by my Crohn’s Disease but on a daily basis by the treatment I have needed for this to stay alive I have the greatest empathy for Sue.
How people with impairments relate to society is complex and may be related to the nature of their impairment which can increase the barriers they face in daily living and leading a full and active life.
Using the social model approach towards defining disability as social restrictions imposed to top of people’s impairments it is necessary to make a distinction between the structures, systems, cultures, environments and attitudes that exist at the macro level of society – the level where they can institutionally exclude or marginalise people with impairments via how people with impairments are ‘taken into account’ and how they are not ‘taken into account’ – and the day-to-day social interactions which take place at the micro level of society.
In my case for example the operations resulting in the loss of several large chunks of intestine cause me daily physical difficulties and I can no longer absorb Vitamin B12 which leaves me at risk of getting pernicious anaemia. These difficulties are exacerbated because of the lack of support available to disabled people who may be able to do some of the physical and medical model tasks to qualify for DLA some of the time but not all of the time.
When my Crohn’s Disease flairs up I am unable to even get out of bed let alone cook. In fact the mere sight or smell of food often makes me be sick. I have to take massive doses of steroids to try to get better again which affects my immune system and means I’m more likely to get other illnesses too and this has also resulted in me having early onset Osteoporosis. I find it very hard to keep my weight at a reasonable level as often I can only eat things like ice cream and jelly for days at a time.
I took early retirement from work because I was advised by consultants that I was more likely to remain healthy and well if I did not work and additionally this would save the NHS a lot of money. However, if work was more flexible and I was able to work when and if I could, and have the time off to rest when I needed it then I would have been able to continue to work.
As a parent I also had the added barriers to face of having to support a disabled child who needed 24 hour support even when I was most ill. There was no help available on a short term basis and I could not afford to pay for any help myself. Many days I almost crawled around to get my son and daughter ready to go to school and then was only able to collapse back into bed. If only I had qualified for DLA then this might have been a different situation, or if social services had been able to offer some sort of short term, at home, respite support.
However with regard to social services I have to say that until it was absolutely necessary to have any contact with them I avoided this as the Children’s services and Occupational Therapy services available where I live were so shockingly awful, which having worked for Birmingham Social Services for 10 years I feel qualified to judge. What use is an OT who says things like “disability is always so dreadful” or “I’m sure new technology is very enabling but I don’t understand it” This was not the sort of attitude towards disability that I wanted my son to grow up with. He’d already discovered at the age of nine that he was considered a fire hazard so couldn’t go to the local inaccessible cinema like his friends so it was really important to me that he understood this wasn’t his fault but the fault of the cinema for not being accessible.