“What’s wrong with you?” – a critique of the Medical Model of Disability

slow secret

“What’s wrong with you?”

 

I get asked this question most days, occasionally prefaced with a “if you don’t mind me asking…” or a “no offense, but…”

More often than not, the asker of this question truly means no harm, and would probably be horrified to know the damage caused by their words. People are naturally curious, and etiquette and rudeness aside (it’s not very polite to demand personal information from a stranger) I am always willing to enlighten those who ask. *

However, I do take issue with that question. Not in what it seeks to ask, but the specific choice of words. “What is wrong with you?” To my mind, I’m afraid there is absolutely nothing at all wrong with me. In fact, as you’re asking, I happen to have really quite a nice life. I have loving parents, wonderful friends; I am well educated and well fed. I am proud of what I have achieved so far in life and am very excited about the future. There’s nothing at all wrong with me.

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I may direct you to ask another question. “Why do you use a wheelchair?” The answer to that would be because I was born with a disability called Central Core Myopathy, which means I have very weak skeletal muscles and therefore cannot walk. That was a very different question, and probably the one you were intending to ask.

Many of you reading will not notice, appreciate or understand the difference in those two questions. That is completely understandable, I certainly don’t think any less of you, and I’m not here to berate or reprimand. The reason so many people think that something is “wrong” with me, wrong being a fully negative descriptor, is because our society has been built with the Medical Model of Disability in mind, and whether you are aware of it or not, you have been raised to believe that able-bodied people are the desirable ‘norm’, and anyone who deviates from that standard is “wrong”. You may even still be thinking that there’s nothing wrong with that assessment, that disabilities are negative things, and that being able-bodied is normal. I hope with this post to convince you otherwise, and show just how damaging that rhetoric can be.

 

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See, completely normal.

A few weeks ago, our very own Work and Pensions Minister, Ian Duncan Smith MP, made a comment calling non-disabled people “normal”. While he has since apologised for and retracted this comment (following the backlash from multiple disabled rights groups), the remarks go some way to hint at the prevailing deeper intrinsic prejudices held towards disabled people among those we elect to lead us. Never mind that Duncan Smith is also responsible for scrapping the Independent Living Fund, cutting payments for the Access to Work Scheme, the bedroom tax, etc etc. (I am not going to discuss at length the many ways in which the Conservative Government have bought difficulties upon the lives of disabled people in Britain – that will be another blog post – if you want to briefly educate yourselves for context, this article is a quick précis.)

Ian Duncan Smith thinks of able-bodied, non-disabled people as “normal”, and thus by expansion, disabled people as abnormal, a deviance from the norm, deformed even. This sort of thinking has been noted and expanded upon by scholars, who have identified various different models of thinking about disability. Unfamiliar with the various different models of disability? Here’s a little introduction (it’s interesting, I promise)

 

Ways of looking at disability – the conflicting models

By models of disability, I am referring to the ways in which people define and explain disability, the ways in which we view the issues and how we deal with them. I realise this theoretical talk can get a bit long winded and jargon-y so I will try and illustrate the models with examples from my own life, and some jokes to hold your attention.

 

The Medical Model

IMG_5786The Medical Model (also referred to as the Individual Model of disability) describes disability as being the result of some physical condition that directly causes difficulties and issues for that person. For example, the fact that I have this mutant RYR1 gene means that I cannot walk and thus experience difficulties. In this model, all the difficulties and problems that are in my life are all down to that mutant RYR1 gene. Damn you, RYR1 gene!!

However, the specific language used by people who follow this model of thinking reveals, however subconsciously, pretty extreme judgments being made, and highlights the underlying prejudices in social attitudes towards disabled people.

It is all largely to do with precisely where the “problem” is placed. In the medical model, it is believed that the individual is, or has, the “problem” (i.e, an illness, a genetic fault, something “wrong” with the body, the goddamn RYR1 gene). This rhetoric fosters the idea that if an individual has a trait that makes them different in this way, it needs to be fixed, as something is “wrong” about the individual. It promotes the idea that people with these “wrong” genes (RYR1 I’m looking at you) or characteristics are “flawed” or “impaired” (or mutated). Under this model it is the goal for disabled people to be ‘cured’ of their problem, through medical means; surgery, drugs, therapy.** If the individual cannot be fixed then they are excluded from society, they are unable to participate in daily life because they are disabled. On a wider political level, according to this model we should be striving to eradicate all deviations from the norm, we should be, one could say, “enforcing normalcy”.

Nothing to see here...

Nothing to see here…

This is exacerbated by words used such as “normal”, and “abnormality”, and alienates disabled people by literally colouring them with words that set them apart as not just different, but inferior. Several sociologists, including Zola and Parsons, have discussed the idea of “normalcy” in socio-cultural terms.

The use of the word “normal” reveals a judgment made by many members of society, a judgment that values able-bodied people above those with disabilities, but also that values those perceived to be “normal” above those who are different or abnormal, a dangerous thing for society as it exerts enormous pressure on individuals to conform.

More worryingly, who gets to define “normal”? Ian Duncan Smith? What exactly is “normal”, and what are deviations from it? Is heterosexuality normal – and homosexuality a deviation? Should we be seeking to cure homosexual people? Do you see my point? (More along this line of thought later…)

So what exactly is the alternative way to view disability? Introducing… the Social Model of Disability.

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Shout out to the wonderful Candice George (above) who informed me that the etymology of “normal” stems from a measurement used in carpentry – literally, a square.

 

The Social Model

The Social Model of disability sees the issue of “disability” as a socially constructed problem and a matter of the full integration and equal treatment of individuals in society. In this model, disability is not an attribute of an individual (RYR1 gene you’re off the hook), but rather a complex collection of conditions, many of which are created by the social environment. For example, I am disabled, yes, but I do not experience problems because I can’t walk, I experience problems because I live in a society that is not at all geared up for wheelchairs. Thus, the issue really is stairs and inaccessibility, not my genes.

Great wallAnother problem that I face on a daily basis is social attitudes towards disability. Whether it be a stranger taking pity on me and offering me money (true story), a passer-by asking God to perform a miracle and cure me (true story), a gang harassing me on the street and trying to push me around for a laugh (sadly, true story), people’s attitudes towards disability leave something to be desired, to put it mildly, and are the source of many issues. The thing that is so beautifully perfect about the Social Model, is that it describes how social attitudes present a problem for disabled people– and at the same time, if everyone followed the thinking of the Social Model it would in fact eliminate these problems. To reiterate: people think that the problem lays with the individual/ the disability itself, which fosters negative social attitudes, which IS the problem. So ironic, I love it.

The Social Model is a hugely contrasting way to think about disability. It shifts the perspective, it moves the “problem” away from the individual and places it on society as a whole, reconceptualising what it is that causes issues. In 1975, the UK organisation Union of the Physically Impaired Against Segregation (UPIAS) claimed:

“In our view it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society.” (UPIAS, 1975; 4)

English disability rights activist Mike Oliver then coined the term ‘social model of disability’ in his work ‘The Individual and Social Models of Disability’.

“It is not individual limitations, of whatever kind, which are the cause of the problem, but society’s failure to provide appropriate services and adequately ensure the needs of disabled people are fully taken into account in its social organisation” (Oliver, 1990; 3)

While many have not encountered the social model of disability, it is clear to see how this shift in language completely alters the viewpoint. The shifting of the “problem” from the individual to society radically changes subconscious judgments made about disabled people. Instead of being flawed or faulty, they are valued as equal. Instead of needing to be changed or cured, they are valued as important human beings, with a need for society to change in order for them to be treated fairly. Instead of being labeled, and having the disability or impairment become the focus of all attention, this language encourages people to think about ways in which society could be better adapted to suit everyone. Instead of segregation, this language promotes equality and a sense of togetherness, we are all only as able as society enables us to be.

 

Why the Medical Model is damaging

The Medical Model of disability still dominates public policy. In the UK, the Disability Discrimination

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Pls take me seriously

Act defines disability using the medical model – disabled people are thus defined as individuals with conditions/impairments that pose limitations on their ability to carry out “normal day-to-day activities.” (Gov.uk, 2014). I’m sorry what was that, did you just say normal?!

I have experienced the damaging affects of this rhetoric all my life. Placing the source of all your issues on your own faulty genes can bring about crippling (no pun intended) doubt, low self-esteem and confidence issues. I’m a pretty confident and self-assured person, and yet I still find myself apologising to my friends when we’re out and discover we are unable to get into a club/bar/venue/whatever because it is inaccessible. I still feel that clawing guilt when we have to change plans, despite the fact that it is in no way my fault, and that we should really focus our attention on the outrageous fact that so much of the UK is inaccessible. (Don’t even get me started on accessibility. I live in a perpetual Tube Strike.)

Telling a disabled person that they are effectively a faulty and flawed version of a healthy, normal person is the same as telling them that they are a secondary citizen. Fostering a belief that able-bodied is “normal” and therefore desirable can lead to some pretty awful things, I’m pointing to eugenics, genetic modification, social Darwinism… These are all rather dark topics that I don’t wish to discuss today.

If you are in need of blazing evidence that the Medical Model of disability pervades our society, you need only to switch on the TV or go to the cinema. Media and art are supposed to reflect humanity in all its forms and nuances, yet have you ever seen a disabled person represented in a film or TV show as a multi-dimensional, complex character who’s entire storyline didn’t revolve around their disability? Lack of representation in the media is a huge problem for the disabled rights movement, one which I will discuss more at length in another post, and you can see how this reflects social attitudes towards disability. Disabled people presented on the screen are different from their “normal” counterparts, they are presented as disabled archetypes; either the victims of a tragedy to evoke pity and sympathy and make able bodied people grateful for their “normal” lives, or they are the fuel of inspiration porn, overcoming great triumphs “if he can do that, you can do anything!” and so on. This is not an accurate reflection of disabled people’s lives in the slightest. Do you want to know what I worry about on an average day? Essay deadlines, boys, soldiering through hangovers, and how many likes my last Instagram got. I would call that pretty normal.

THE WALL. DONE-146

* * * *

When people conflate the terms “able-bodied” with “normal”, they are effectively telling me that I am abnormal. When you ask me what is “wrong” with me, you are telling me that I am inferior to yourself, that I have some sort of intrinsic negativity. When Ian Duncan Smith comments that he wishes to see employment rates of disabled people reach similar heights to “normal” people, he is putting all people with disabilities in a box marked “different” and shunning them all to the side.

I would like to do either one of two things. Either, we stop conflating ‘non-disabled’ with ‘normal’, for all the reasons I have discussed in this post. Or, by far the better option, we abolish the word “normal” altogether, realising that it is a completely abstract and subjective term that means a different thing to whoever is using it. We should all just accept that every single human on the planet is different, that humans come in a variety of shapes, sizes, colours, appearances and abilities, that we fall in love in a multitude of different ways, that we identify differently, and that there is no such thing as normal.

In short, disability is socially constructed, there’s no such thing as normal, society needs to get itself together and make accessibility a priority, we need realistic disabled people on the telly, and stop asking people what’s “wrong” with them.

 

Finally, a message to dearest Ian Duncan Smith; if you take “normal” to mean people like you, then yes you’re right – there isn’t a single thing about me that’s normal. Aren’t I lucky?🙂

rrzzx

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19 responses to ““What’s wrong with you?” – a critique of the Medical Model of Disability

  1. I look at things quite differently than you do, I do not consider myself to be disabled (societies label for a “person” who is not normal”) I consider myself to be differently abled. My body works but differently than others I can do things but again differently than others, so I am not going to accept a label of disabled which when broken down means not abled. I am able

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  2. In my PhD I’m looking at how symptoms of dementia are exacerbated because society is so slow to put in place attitudes and aids which will allow people with dementia to continue a meaningful life after diagnosis. Your article is very helpful.

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    • Hi Shawn, many apologies for this dreadfully late reply!

      I presume you are referring to the employment of person-first-language. I appreciate that many persons with disabilities prefer the term “person/man/woman with disability” over the term “disabled person”, as it emphasises the idea that I have an identity that is not solely consumed by or defined by my disability, that I am a woman first and foremost and that my disability is an additional piece of information – I am not simply “a disabled”. I too used to prefer this term.

      However, I’ve been thinking a lot recently about identity, and the re-appropriation of particular terms. In her keynote speech, “The Forging of a Proud Identity”, Nadina LaSpina argues that she sees nothing wrong with putting adjectives before nouns – “I say that I am a Sicilian woman. Placing the adjective “Sicilian” in front of the noun “women” does not diminish me….Why should putting “Disabled” in front of “women” diminish me? Unless the person who’s talking is an ableist who thinks I should be ashamed of being who I am”.

      I personally prefer using the term Disabled to describe myself, I feel like I have the right to claim the term in my own positive way and to root the label in my own proud identity. I see nothing wrong with being Disabled, it is another adjective to describe me along with blonde, small, British, funny (I hope!)

      This being said, I appreciate many people disagree with me. I have never claimed to be able to speak for all people with disabilities, and completely respect that everyone has their own unique standpoint not just on this but on many other issues. In my writing I try to use a mixture of both terms to reflect this.

      I hope this answers your question. If you have any further questions or comments do let me know, I would be thrilled to discuss this further with you!

      Many thanks,
      Pen

      Liked by 1 person

  3. Pingback: Red Rhetor Digest (October 8, 2015) | A Collage of Citations·

  4. Outstanding post; thoughtful, powerful and funny. I am frequently asked “what’s wrong with your brother?” when I proudly show people a picture of him (it just so happens he in a wheelchair). It is such a personal question and such a damaging way to ask because of the language which people use. Yes, ask me how come he’s in a wheelchair but not “what’s wrong with/the matter with him”. I am a big believer in the social model of disability: the most disabling factor is society. Keep up the great posts🙂

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  5. Hello🙂
    I too have a disability, and spent part of my MA dissertation exploring the medical and social models of disability, so this really interests me🙂 I certainly agree that there are many problems with the medical model, and that the social model provides some necessary answers. But here’s my difficulty – my disability causes me pain, not because of inaccessibility or people’s attitudes (although those certainly cause me emotional pain, and sometimes contribute to my physical pain), but even if society was completely accepting, accessible and understanding of variance, I would still experience physical pain, and that would still prevent me doing things. E.g. friends with ME, for example, experience excruciating pain from every sense, however much adaptation is made to lesson that pain, and so they are bed bound, and therefore unable to live a life where they can interact with others, sometimes even eat solid food or express themselves, and these tings suggest to me that at least some disabilities or parts of disabilities arise from within the body, as suggested by the medical model. (that doesn’t mean there’s some ‘wrong’ pejoratively or inherently, but all I have met with such conditions would rather they did not have it, or at least to a lesser degree, and that requires medical treatment. Have you got suggestions for a way of describing disability that takes into account such conditions that limit life or activities because of medical reasons, whilst also maintaining a rejection of normalcy (which I think is complete nonsense as a concept), and encouraging society to be more accessible and accepting of difference?

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    • I suggest that you take a look at the International Classification of Functioning, Disability, and Health or ICF model. It was developed by the World Health Organization and is a modification of the biopsychosocial model. It looks at the individual and the health condition affecting them very holistically – looking at the contexts of impairments (measurable deficits like reduced strength or joint mobility), activities that are affected (like an inability to stand or walk), participation that is affected (such as social activities or family roles), as well as the personal and environmental context (like personal facilitators like positive attitude, or environments barriers like inadequate access to buildings due to lack of ramps or doors that don’t fit a wheelchair).

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      • I think you have either missed the point, or given a politician’s answer.
        Some disabilities cause sickness or illness – mine in particular has 2 parts; the obvious musculoskeletal failings which could be overcome easily with society’s will, and the very much less obvious pain, sickness, fatigue and autonomic dysfunction, which manifests itself silently, but renders me incapable of finding out if he world outside is prepared to accommodate me. Yes, if I am out and about when the internal stuff kicks off, then the social model is very relevant, as there are is no provision of beds, duvets or vomit bowls. Damn you society!
        A ramp or whatever is all well and good if that is what reduces your difference of experience – but there are some things that are just too medical.
        People often brush over the fact that disability is not just an impairment – a person with a long term chronic health condition is classed as disabled too.
        Its this ignoring, or denying, the medical model, and focusing on the social model that allows people such as IDS to get away with the things he says and does.
        This is why DLA is going and PIP is coming – they had a marvellous excuse that the world is a different place to 20 years ago, due to the social model.
        So whilst the social model may work in principle it fails in practice, and the medical aspects are held up to be some sort of weakness by some of the very community whose other members need the more medical aspects of their condition to be taken into account.
        These purely academic models have a place – its called academia.
        In the real world hardly anyone fits into these neat boxes, and now Governments have latched onto them, fully aware of the reality, but finding them useful tools to demonise people.

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  6. This was a fantastic post. An eye opener to many! Thank goodness the few times I met you, never asked any of those kind of questions. I just thought of you as a lovely and bubbly girl, who has kindly taking the time and effort to come and watch his friends playing in the band! Well done for sharing your thoughts worth us. I would contact some newspapers and magazines, I am sure some would publish it too. Best of Luck! X

    Liked by 1 person

  7. I absolutely loved this post, my mum has fibromyalgia and people ask her all the time why she uses the disabled parking spots or accessible toilets. I hope that schools soon start to educate children in a clearer and less judgemental manner, your attitude is just brilliant. I loved all your pictures too and the GIF of you and your mates dancing is brilliant! Thanks for sharing x

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    • Thank you so much Phoebe, I’m glad you liked it. You’re right – invisible illnesses are so often overlooked and subject to much judgement and misunderstanding. I too hope that these issues are discussed more in schools, and we can help by talking about disability more openly and aim to demystify and un-taboo the subject!
      I’ve promised a friend to increase the number of dancing GIFs in my next post🙂 Thank you for your comment! x

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