Disability: Identity and Political Change

Welcome to my 200th post and its a big one! Did you all manage to read my guest blog post a couple of days ago? HossyLass was able to articulate a perspective of disability I am unable to. Not because of a moral or principal disagreement, but because our impairments (the correct word to use for someone’s medical condition) affect us very differently. I have always been aware of different impairments – my cousin is deaf, my other cousin has Down’s Syndrome, I work with a blind man and a dyslexic guy, I know wheelchair users with different impairments, even within SMA (my impairment) the spectrum is massive. Also my aunty has had ME (chronic fatigue) for many years and a uni friend is tussling with this at present too.

Since I have been speaking out through my blog my aims have been: to inform, to inspire and to change. I believe the power to any blog is personal experience. However when an individual speaks out against government decisions or societies discrimination, it has to become a collective. The disability community is a clever, articulate, politically aware and economically savvy bunch. With the increased cost of living, government cuts and welfare reforms disabled people are becoming scared and rightly vocalising this. While the cost of living affects a whole economy, disabled people face additional costs. While the cuts are affecting many groups, cuts for disabled people can mean no food, hygiene or shelter. While welfare reform are largely embraced to simplify a complicated process, it is actually scare mongering and scape goating disabled people.

The feedback I have had alongside this terrible political economic state has been:

  • From people with very different impairments to my own
  • Impairments that can cause so much fatigue and pain, getting out of bed is not possible
  • People so fearful of the governments ‘Back to work’ initiatives
  • Individuals questioning how the social model is valid to them
  • Questioning how a government can be so callous in their narrow views. An example of the new tests for 1.5 million on incapacity benefit (a benefit for people unable to work due to disability or long term illness) is as silly as if someone can hold a pen. Its clear to see someone could hold a pen, but have multiple reasons why work is still not possible

I do not pretend to have the answers. I want to just share my opinions on this. I see this in 2 strands – the identity of the disability community and the identity of the government policy changes.

Medical v Social model – A big part of the disabled communities identity stems from which overarching model they use. Despite its limitations I do back the social model. To my mind the medical model was where disabled people were ‘the problem’. Their impairments were to be cured. They were shunned away from society and received awful medical treatment such as electric shocks to remove their impairment. The idea of the social model is liberating. Disabled people are not the problem, it is the construction of society. I do concede its inclusivity for different impairments has its limits. However please do not suggest the medical model is right.

Medical treatment is a necessity, but this is wholly different from the oppression of the medical model. Surely it is about understanding an individuals limitations physically and mentally, receiving physio, spinal fusion operations, pain relief etc. Then in understanding what could still be achieved despite medical limitations learning how to remove any additional societal barriers in the way. Employment could mean encouraging businesses to offer more part-time jobs and working from home. Socialising could mean open minded friends being creative around social settings. I still maintain the world is everyone’s oyster, with the right medical and technological advances, government support and societies inclusivity.

If the disability community can reach a rigid stance on its collective identity, there is greater chance of change. If segments of a minority group stand for conflicting needs, the government will struggle to satisfy its needs. With one collective loud voice, how can the government ignore 10m people?

The government policy – I believe if the common needs are sieved out, we can offer solutions and not just problems. At a top level this could be:

  • An understanding of different impairments and their implications on a person
  • Disabled people, even with similar impairments, have different personalities and views. There is no such thing as one size fits all
  • Once understood, listened to and included in decisions, disabled people just want to get on with living life. We are not trouble makers or fraudsters.
  • It will take money, time, innovation and learnings to get to a perfect policy. However with affordable medical treatment, equipment and care; disabled people will achieve their own potential

Mr Osborne and Mr Duncan Smith – If you invest in disabled people the way you are encouraging the world to do in your economy, you will see a massive ‘rate of return’. In contributions to the economy, in increased employment through social care, in tax revenues from both of these, and in healthcare savings from improved welfare and happiness. Open your eyes!!!

Please retweet, email and post this anywhere. Raise the awareness that this is a complex issue with complex answers. Only collectively (through healthy debate) can we find the answers. I hope this sparks some thoughts, passion and change to at least one of you.

Martyn
martyn@martynsibley.com
Twitter: @martynsibley

7 comments

  1. Fantastic piece Martin which simply says it all. I do believe this Government are making their reforms based on a medical model.. people who claim benefits are work shy, its a phrase that bounces from every corner of the gutter press. If someone is off ill from work, employers treat that person like it is their fault, put endless pressure on and end up exacerbating the situation.

    If you look at the social model, its about what can be done to improve someones situation. Stripping them of their benefits simply because they can hold a pen is not going to cut it.. As you say, its not one size fits all…

  2. This is an incredibly insightful piece Martyn. I’m in Australia, but have lived in the UK. Therefore I can relate to so much of what you are saying. Although I’m not sure who the two gentlemen are. There are some of us here who are starting to collectively argue the business case in Australia and the NDIS will no doubt help this but we are not as advanced as you seem in collective argument which slows our bargaining powe, lowers our effectiveness and decreases our mainstream participation rate.

    So for what its worth you Brits are on the right track

  3. I believe there is a real problem with the use of models. Essentially they are “thinking” models, not sets of rules, and open to differing interpretations.
    What is a huge concern is the Government using the term “models”, indeed they are justifying replacing DLA with PIP by suggesting that the social model has had such a huge impact on society that various elements of DLA are no longer relevant in the 21st century.
    I find this offensive on many levels, distorting the social model, infering that the model’s work is done and also failing to understand that for many, many people they dont actually care if society considers that there is “something wrong with them” – because actually there is.
    I’ll give several examples;
    There is something different about my brain – it has a problem with pain, and doesn’t manage the pain message correctly. The result is I become completely disabled by the pain, unable to function because of it. (Breakfast today 8 painkillers, tooth ache in 3 quarters of my jaw including an area with no teeth.) Most people would, if they had met me this morning, have suggested a dentist or other medical intervention.
    Compare this with someone who has Aspergers. Their brains are different too. But the majority of the problem lies with society not seeing Aspergers as “different-but-just-as-good”. They just see it as different-and-not-understandable, and a terrible burden, and all sorts of other stereotypes. Including the “Oh you must be a maths genius”…
    Two differing and different brains, two totally differing reactions from society, and two different conclusions about how each situation could be addressed.
    The deaf/Deaf community are a good example. They are pretty much divided into two camps, and are quite clear that they are. (think of it more of a line spectrum, the two thins are not mutually exclusive).
    Some would say that being deaf is a problem that society can alleviate with signing, hearing loops and other adjustments (remind me again, why do we HAVE to learn French, but not learn to sign?).
    Others in the deaf community see the impairment as something they want to change, for whatever reason they would like to have some hearing, and look to medical solutions.

    I suspect most people with an impairment have a view that in part society disables them, but that some of the more medical aspects of their condition actually are very pertinent too.

    I think this is part of the irritation about the Government reforms. In the ESA WCA there is scant referance to pain. If I had a job, then this morning I would definately have phoned in sick. I was sick. My condition makes me sick. Hence I will always be sick (baring medical miracles).
    But according to the DWP ESA WCA Handbook there is a recommended amount of time that I should become cured in, or learn to adjust. Hmmm, no cure, and I am not sure how I can adjust to randomly being struck down in agony.
    And yet people argue that the WCA is heavily biased towards the medical model. If it is then they haven’t heard or understood the word “incurable”.
    Others would say that the WCA leans heavily towards the social model, as what can be more social than work? (well, a good night down the pub obviously!).
    The tests are pretty much functional, i.e. can you do this task, that task etc. However the handbook disregards the true reality of work, which includes being able to get to work. It assumes that society is a truely impairment friendly place that has accessible transport for example. It also states that wheelchairs are “readily available”.

    The Government seems as confused about these “models” as the majority of the impaired and disabled community are.
    What is truely dangerous is the fact that the Government blames or credits these models as reasons for welfare reform, and none of the reforms will benefit the majority of people with impairments, chronic conditions, degenerative conditions, genetic conditions, incurable conditions, randomly fluctuating conditions, purely functional loss or anything else that makes us “different” or having “something wrong with them”.

    In the Government’s eyes all sicknesses and conditions are curable, or you just learn to live with it.
    All impairments are negated by the social model and being in a society that accepts and accomodates physical impairment.
    There are no other conditions. Except iminent death.

    Please note this is a blog post, not a suggested solution to all world ills, or an academic paper, hence it may be incorrect, may not conform to the majority view, or may even offend.
    It is however the ramblings of someone who has physical impairments, a genetic condition, an incurable condition, and some mental health issues.

    Dont let the Government divide us on this, and if you must fight, then fight for all, not just your own particular impairment.
    Fight against what is wrong, not against each other (and yes, I am a bit feisty sometimes!).

  4. Hi Martin :).

    Interesting blog. I think your right about the social model but the government has focused too heavily on it and seems to have the overly simplistic view that once that’s ‘fixed’ the medical model will be negated.

    Whilst I agree with you that the medical model shouldn’t be the default categorization of disabled people, they don’t seem to have factored in the impact on a person’s life of ‘invisible’ disabilities as well as the invisible elements of visible disabilities (for example a neurological problem that means a person can’t walk and uses a wheelchair can also go hand-in-hand with a sensory integration problem that makes concentration difficult). It seems as if politicians just don’t know what to do with the people who inhabit the shades of grey and can’t squeeze themselves into a nice neat box so the system can ‘deal’ with them.

    If I wanted to change the system in a meaningful way, I would start by getting rid of the useless Disability Employment Advisers. Mine offered me a job as an office junior (I was 30 years old and a qualified sound engineer at the time) then shoved me onto Income Support because she couldn’t find me a job (not that she tried very hard). I recently learned that she’s retired and the current DEA hasn’t even bothered to make herself known to me!

    Having cleared out the dross from the DWP, I would put in place a whole team who’s job is to help people work by offering tailor-made solutions, not setting us up to fail in a system when the benchmark for success is solely based on what able-bodied people can manage. I would love some assistance with my ambition to become self employed as this is the best way for me to work and accommodate my disability, but after spending hours at my computer looking for assistance and writing speculative e-mails, I keep drawing a blank.

    And the most radical idea of all? Let disabled people themselves lead these services with able bodied people employed to implement services after consulting with is and respecting our first had knowledge of life and work with a disability.

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