Treating disabled as 'patients' leads to stigmas and discrimination

It is disheartening, to say the least, when I can still pick up a book or read a call for unity to fight for social justice which omits or does not give equal weight to the disability social movement against oppression (Marta Russell 2002).

Today disability is studied in two ways. The first is the medical model of disability, which looks at disability as a medical illness that either has to be medically cured at an individual level, or controlled to allow the person with a disability to become a normal functioning member of society. On the other hand, there is the social model of disability that understands disability to be the outcome of social, political and economic processes, which have an impact on the lives of people identified as disabled, as well as on the lives of people who are not identified as disabled.

Whereas the medical model focuses on the individual as a “patient”, in contrast, the social model focuses on the infinite social processes and dynamics of disability. The social model is empathetic to the view that disability discrimination and prejudice is made stronger by a lack of accessible and socially and economically rewarding information, technology, architecture, features and events.

The antiquated view of the medical model of disability has persistently helped to create stigmas and disutilities upon “people with disabilities”. The medical model believes that “people with disabilities” may never attain acceptable social norms without a complete cure. This leaves those that cannot be cured, with an impossible dilemma which leads to the social, economic, political and cultural marginalisation of many “people with disabilities”.

My own experiences reveal the failures of the medical model as a source of stigma and discrimination. Whereas the social model is to challenge such stigmas and discrimination that have helped to create the differences in approaches to ability and disability that are not just matters of academic debate.

Personally the gradual progression of my disease (Friedrich's Ataxia) has created a world of exclusion from the norm of society. At the same time, in being motivated by the hope of better times to come, I have engaged and succeeded in the world of academia. As I will argue, the social model allows many “people with disabilities” to attempt and possibly achieve their goals, with less harassment from unjustified stereotypes and therefore discrimination. Ideally the social model of disability could stop most forms of discrimination against “people with disabilities”.

For example, I have lived on my own for the past 15 years, which has been extremely difficult, but has allowed me to shake off many of the day-in day-out shackles of most established medical beliefs concerning people that are severely disabled. I completed a double degree at Monash University (Peninsula campus) that entailed a Bachelor of Arts and a Bachelor of Business (Accounting). Then I went to Monash University (Clayton campus) to complete a qualifying year and an MA (by research) itself. I have now completed (yet to be assessed) a PhD at the University of Melbourne.

The past four years have been my most successful to date, realising many academic accomplishments. I have been able to achieve these outcomes even though some of my physical abilities are severely reduced from those of society’s so-called “norms”. For example, I can type at a speed of three words per minute.

The following extract, from an article I had published in issue 52 of the Journal of Australian Political Economy, reveals in more detail the results of the medical model:

The medical model has traditionally placed many other stereotypes, stigma and disutilities upon me and many “people with disabilities”. For example, I have been pitied, conveniently verbally misunderstood, looked down on for my abnormal structure and characteristics, characterised as a loser. Over the years I have come to understand most people's roles in the barriers to social inclusion as due to their lack of accessible information about disability. If, according to the medical model, such problems are a reflection of my severe disability, what would be the best model to explain the progress of my PhD in Sociology, which I plan to submit early in 2004?

In 2004, by the time July came round, I was totally exhausted and run down. With the assistance of family and my local GP, I gained entry into hospital, as I had aching pains in my right wrist that made my routine transfers hard to manage. These outcomes temporarily controlled the quality of my life at home and directly affecting my ability to complete my thesis.

While medical care is clearly crucial in the lives of many people with disabilities. There is a need for a closer connection to be made between medical care and the social model of disability, which has the potential to make society more inclusive of “people with disabilities”. Most of my life - with Friedreich’s Ataxia (the disability) and especially over the past 15 years - has been characterised by my limited exposure to the medical model of disability.

My life to a large degree has been structured in accordance with the social model of “people with disabilities”. I had felt no reason to place any belief in the ideas put forward by the medical model that would view me as inferior to society's norm. But more than ever, I am swayed to a certain degree, by realistic and pragmatic medical opinion. Is it because today I can now identify with a future?

Today I am 42-years-old, awaiting a PhD result, which would be a very high honour for even the most able-bodied of persons. I am sure that there will be some recognition of the achievement, but some will plainly refer to it as a novel action or illusion created by civil libertarians to further the need for social policy.

While there are severe limitations to the medical model, it is the case that most medically diagnosed impairments will require continued medical support. Medical doctors, medicines and therefore the medical models do have an impact on the lifestyles of “people with disabilities”. In this regard, the later (the medical model) should not be discounted.

For example, some time ago, around 1987, a friend of mine with Friedreich's Ataxia (the same disease I have) was to be married to the guy of her dreams (an able-bodied individual). But as she signed the register, she got too excited, and had a heart attack and died. In hindsight, the wedding was a beautiful moment, and the embodiment of the social model. But what should have been done to prevent the heart attack, remains within the medical model. In other words, it is the interaction between the medical and social models of disability that is important.

Today I feel totally focused, as I am concentrating on the outcomes that may be afforded me by my studies, while also still making time for needed forms of medical therapies, namely speech therapy. In the future I plan to incorporate more forms of medical therapies into my lifestyle in the hope of adequately sustaining my illness. Nevertheless, my goal is to ensure that such medical therapies are located within a broader social model.

Hugh Stretton has identified what he argues is the need for people to maintain the “correct balance” between the medical and social models of disability, if people with disabilities are to achieve a rewarding “quality of life”. That is, in all aspects of life it is necessary to try and keep the correct balance for success and happiness in all of life's pursuits. The correct balance will assist “people with disabilities” make necessary choices, about how and what to do in life, as many “people with disabilities” must create their lives around what they can do, not what they cannot. For example, today within the Higher Education sector I feel appreciated, and this will have a flow-on effect to many other parts of my life.

To succeed in today's society most actions by “people with disabilities” need the adequate collective assistance of the state. And only on rare occasions are such collective state empowered actions driven solely by either the social or medical models of “people with disabilities”. Hence, we are humans and are therefore too complex to have enough action put there by one political approach or model.

In conclusion, the correct balance between the social and medical models needs to be put in place if “people with disabilities” are to move forward. Therefore we should look to the less enlightened political processes of the medical model on its own as being consigned to history.