ABNORMAL

Towards a Scientific Model of Disability

Colour photograph of the artist sitting in a power wheelchair, in front of a sign saying Abnormal
Photo: Julie Newman

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It is important to clarify that, just as there is a difference between how doctors view disability and what we define as the Medical Model of Disability, any definition of a Scientific Model of Disability must go beyond how scientists define and view disability. When we talk about the Medical Model, we are talking about how society uses medicine to conceptualise disability, which in turn determines how disabled people are treated within our society. We are not simply talking about how doctors conceptualise disability, nor are we assigning them more power within society than they actually have.

Similarly, a Scientific Model of Disability has to reflect how society uses science to conceptualise disability and to treat disabled people; it cannot simply reflect how scientists approach disability. Scientists, being part of society, are also affected by the other Models of Disability that are prevalent within it; it is not a simple one-way process. (The same, of course, is true of doctors.)

Despite the above, though, I have found it useful to look at the commonalities and differences between doctors' and medical research scientists' approach to disability as a starting point for developing a Scientific Model of Disability, and after lengthy discussions within the scientific community I have come to the following conclusions.

What are the commonalities between doctors' and medical research scientists' approach to disability?

Disabled people are defined by our diagnosis — “the cerebral palsy case” “a partial T4” "an upper limb disorder" etc — and by our degree of difference from ‘the norm’.

Disabled people’s bodies are seen as being of overwhelming importance, rather than our lives or our achievements.

Disabled people's lives are believed to revolve around our impairments, and our quality of life is believed to be negatively affected by them.

Our impairments, not society's barriers, are believed to be what disables us.

Medical practitioners and scientists, not disabled people ourselves, are the experts on disability.

What are the differences between doctors' and medical research scientists' approach to disability?

Medical practitioners meet disabled people every week of their working lives. Whereas medical research scientists almost never meet a disabled person while they are at work.

Medical practitioners almost never carry out research, although they may carry out research trials for scientists. Whereas medical research scientists carry out research every week of their working lives, but are rarely qualified to practice medicine.

Medical practitioners focus on the macro - the disease or 'abnormality' and the parts of the body affected by it. Whereas medical research scientists focus on the micro - the different processes that go to create the abnormality or disease state at their most minute level.

Our personality is only of interest to medical practitioners when it is believed to cause our impairment. Whereas our personality is only of interest to medical research scientists when it is affected by our impairment.

Disabled people’s individuality is of little or no interest to medical practitioners; only our shared traits are important to them. Whereas disabled people’s individuality is of interest to medical research scientists, because of what it tells scientists about the ‘norm’ and about the genetic make-up of various disease states.

The primary purpose of medicine is to understand, treat, and hopefully to cure disability. Whereas the primary purpose of science is to understand disability; the development of treatment and cures may often only be a secondary consideration, if that.

Disabled people are of interest to medical practitioners primarily because we help to advance the understanding of disease and the development of treatment and cures. Whereas disabled people are of interest to medical research scientists primarily because we help to advance the understanding of the ‘normal’ human body.

So what is the relationship between, doctors, medical research scientists and disability?

Clearly, then, there are some significant differences between the ways in which scientists and doctors approach disability and disabled people. This in itself suggests that there is a Scientific Model of Disability which is distinct from the Medical Model.

A male doll dressed as a doctor faces front against a white background. Behind him are a child's medical kit and microscope.

When I produced my Helping the Handicapped website in 2003, I regarded doctors and medical researchers as being one and the same. Like many people, I believed there was a much closer relationship between them than actually exists, both practically and professionally. When I look again at my illustration of the Medical Model of Disability, it actually seems to reflect science more than medicine. The caption reads:

"I invent and administer tests to classify disabled people according to what I think are their impairments. Then I carry out experiments to try to make them more like me. If I fail, I try to identify and kill them before they are born."

In the 21st century, it is scientists who develop tests to identify and define impairments. (Although earlier in the development of modern medicine it was at least as much the province of doctors.) Doctors simply administer the tests before scientists then determine the results.

In the 21st century, it is scientists who experiment at cellular and molecular level to correct 'abnormality'. (Although in the 19th and 20th centuries, it was doctors who developed 'therapies' aimed at doing the same.) Again, today doctors simply administer the experimental treatments that result from scientists' research.

In terms of the growth of foetal testing and the abortion of foetuses which are 'in danger of being abnormal' - relatively few tests are actually definitive - both doctors and scientists play a role, alongside, of course, politicians and the rest of society. In the UK in the last years of the 20th century, the Labour Government introduced a policy of 'offering' all pregnant women access to all available foetal tests. This had the aim of reducing the financial cost to the state of medical and social care for disabled people through the resulting increase in abortions where tests predicted a high probability of impairment. Women have widely reported that they have been coerced into taking these tests, including tests that can endanger the foetus, and that 'counselling' following 'positive' test results has focussed heavily on the desirability of abortion.

It is society that plays the key role here. Feminists, of whom I am one, have argued for a woman's right to choose. Scientists have created tests which offer one particular choice (although it is mostly illusory in this case, given that most disabled children acquire their impairments at birth or in early childhood rather than in the womb). The language of 'choice' has then been adopted by the state in order to persuade women to try to produce only children who will make as few demands as possible on the health, social care and education systems. Doctors, meanwhile, act as the agents for all of the aforementioned groups.

So how does this help us to develop a Scientific Model of Disability?

It is useful at this point to look briefly at the two main existing Models of Disability again. Essentially, the Medical Model of Disability locates disability as being a medical condition experienced by the individual affected, and disabled people are often referred to and defined by their impairments e.g. 'the blind', 'the deaf', 'epileptics', 'schizophrenics' etc. People with the same condition are expected to share the same experiences of their impairment and to have the same access needs, rather than each individual having different experiences and needs (as is actually the case).

The Social Model of Disability, on the other hand, locates disability as being socially constructed through the creation of artificial attitudinal, organisational and environmental barriers. Impairment is regarded as being a normal part of the human condition, with everyone experiencing impairment differently and having different access needs. Life is accepted as including negative experiences, and impairment may be - but is not necessarily - one of them. Disabled people are defined as being people who experience the unnecessary barriers created by society within their daily life.

Crucially, when using the Medical Model the individual disabled person is seen as causing many problems for society. When using the Social Model, society is regarded as causing many problems for disabled people.

Where can I read more about the Medical Model of Disability?

So what might a Scientific Model of Disability look like?

Just as disabled people are regarded as being defective and deficient using the Medical Model of Disability, scientists believe that disabled people are abnormal, and this must form the core of a Scientific Model of Disability. Given the similarities listed above between how doctors and scientists approach disability, it therefore follows that, as with the Medical Model, within a Scientific Model abnormality, not society's barriers, impacts negatively on disabled people's quality of life and makes 'normal' happiness impossible. Abnormality, then, is the cause of disabled people's problems, and will inevitably cause those problems.

Using the Social Model of Disability, impairment is seen as being a normal part of the human condition. Since everyone will develop impairments at some point in our lives, society should change to acknowledge this. The fact that Western society has largely failed to do this is inextricably linked to the widespread belief that science will, some day soon, be able to offer a cure for all ills, and that when we become so old that this is no longer possible, we should be assisted to die. A Scientific Model of Disability therefore must include the belief that science is all-powerful and will soon eliminate abnormality forever.

This is despite the fact that experienced scientists do not believe this at all, since their work proves daily that it is not true. However, scientists are largely unable to admit this in public because their ability to attract funds for their research depends on their fulfilling society's stereotypes. In reality, as the old saying goes, the more they learn, the more they realise they have yet to learn. Despite this, most people believe that scientists are experts in the most absolute sense, and this belief must form part of a Scientific Model of Disability.

As we have seen, disabled people are of interest to scientists primarily because we help to advance the understanding of the ‘normal’ human body. Within a Scientific Model of Disability, then, normal people are the important ones. This is often voiced overtly by society, for example when urging drug testing to be carried out on disabled people rather than healthy volunteers.

In fact, scientists rarely meet a disabled person in the course of their working week, either as colleagues - I was the first wheelchair user to have worked at the National Institute of Medical Research that anyone could remember, despite lab work being so easily adaptable to disabled people's access needs - or as research subjects, since research is now carried out largely at the cellular level. Similarly, within a Scientific Model of Disability, disabled people ourselves are invisible.

Just as doctors DO see disabled people during the course of their working week - and often lots of us - this invisibility is in sharp contrast to the Medical Model, where the disabled person, albeit the defective, needy, problematic, disabled person, is at the centre. Instead, using a Scientific Model, the inevitable result of disabled people's invisibility is that scientists are central.

To summarise the Scientific Model of Disability, then, disabled people are abnormal, and this is the cause of their inevitable problems. And since normal people aren't disabled, disability is only a minority experience.

Meanwhile scientists are all-powerful and are experts on disability, and therefore disability will soon be eliminated.

It follows that making fundamental changes to society to accommodate disabled people is a pointless waste of money, as it will soon be unnecessary. In the meantime, only an abnormal minority are affected.

How does the Scientific Model of Disability affect the media?

In the past, the Charity Model of Disability dominated media representation of disabled people. Disabled people were represented as being the tragic victims of their condition and the passive recipients of charity, or as 'triumphing over tragedy' to lead a semi-normal life.

Now, however, the Scientific Model of Disability dominates the media, and by extension our society.

Since disabled people are regarded as being an abnormal minority who will soon disappear, it follows that media representation of disabled people is confined to modern versions of the freak show. The media is driven by what is new, and needs to be seen as cutting edge in order to compete in the market place. As a result the media portrays what it believes to be the society of the near future - a society that has no disabled people within it - rather than the reality. This echoes the general invisibility of disabled people within the Scientific Model.

How does the Scientific Model of Disability affect scientists?

The Scientific Model of Disability is NOT scientific, nor does it reflect the views of scientists (although as members of society, scientists are inevitably influenced by it too). But it does affect how scientists have to present their work for funders, as well as creating unrealistic expectations of scientists by the state, society and business.

In addition, as a result of the Scientific Model of Disability:

Either we view scientists as being selfless, dedicated to improving the wellbeing of us all as they develop life-changing, life-enhancing and life-extending cures, rather than as being motivated by intellectual curiosity and/or economic imperative and/or greed like the rest of us.

Or we view scientists as being demented and power-crazed, using their talents to endanger us all by attempting successfully to play God. Scientists therefore need to be rigorously controlled because they are unable to resist their own desire for power and control themselves.

The Scientific Model of Disability, then, is extremely unhelpful to scientists, placing unnecessary pressures on them and hampering them in their work.

Does this have anything to do with Disability Equality?

Disabled people have made considerable progress towards social equality in the United States and United Kingdom during the past few decades partly because of the development of theoretical models of disability. These have aided our growth in understanding why disabled people have been and continue to be discriminated against, and what will have the most positive and achievable impact on our quality of life in the future. Increasing our understanding will in turn enhance the pace of this progress.

Does it matter to anyone else?

Since it is normal to become disabled, and the vast majority of us WILL become disabled at some point before we die (the rest dying prematurely and suddenly), then of course disability issues affect us all. Even if we do not become disabled ourselves, we will witness our friends and relatives living with impairments. Two-thirds of all disabled adults in the United Kingdom have acquired their impairments in adult life rather than being 'born disabled', and this is likely to continue.

Most importantly of all, we will be much happier when we

© Ju Gosling aka ju90 2008

Funded by the
wellcome trust

 


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