Realigning For a Social Understanding of Disability

A socially deepened understanding of disability could stop most forms of discrimination against people with disabilities, writes author and disability researcher Dr Peter Gibilisco.

My life has been significantly challenged and soured by a disability that has diluted all aspects of my life. Rahila Gupta asks how do you value disability at the same time as mourn the loss of ability? That is, most political movements are founded on the demand to overturn injustices (righting wrongs) — and the disability movement is no different.

For people with disabilities to gain a natural tenancy within life and to discover its normal conquests at each stage of the life process, a social movement must gain and harness media support through the promotion of life stories that are capable of initiating pathways that demonstrate that the goal for an inclusive future is no idealistic dream.

Such a movement should promote life stories of people with disabilities who have succeeded. And so, when stories of people with disabilities succeeding in life becomes a natural part of everyday existence, a movement grows and more stories are brought to light because people begin to see the possibilities.

Of course, the first step towards unwinding any entrenched resistance toward disabled people’s rightful access to the opportunities that are freely available must be to promote positive images of disabled people, to excavate the hidden history of great contributions, of heroic stories, of how efforts have been made to move towards light and glory, of asserting the right to exist.

People with disabilities are among the world’s most political and socio-economically downtrodden. Disability plus social injustice has created monstrous evil. Jenny Cooper in Inclusion is our Destiny wrote:

During the witch hunts of medieval times, millions of disabled people were put to death as witches. The catalogue of crimes continued in the nineteenth century with the ‘Eugenicist’ movement which attempted to improve the quality of the human race by selective breeding. Disabled people were shut away in separate institutions and sterilised. Coinciding as it did with the growth of competing European empires, each wanting to prove superiority, this ultimately led to the murder of 140,000 disabled adults and 100,000 children at the hands of the Third Reich in Nazi Germany.

Throughout history, we must admit that a basic contempt for people with disabilities has prevailed at the forefront of what has been said to be “progress”. But today we stand on the edge of a new political era; globalization should mean that human rights have top priority.

Personally, as I have experience the gradual progression of my disease (Friedrich's Ataxia), I have deepened in my understanding of how exclusion from social life arises as if it is simply normal. At the same time, in being motivated by the hope of better times to come, I have engaged and succeeded in the academic world.

As I will argue, social policy has developed so that many people with disabilities can now attempt and possibly achieve their goals. They can do so with less harassment from unjustified stereotypes and discrimination. Ideally a socially deepened understanding of disability could stop most forms of discrimination against people with disabilities.

This is not to misjudge or de-emphasise the situation of empowering people with disabilities. We should not be complacent. Yes, much has been done; but there is still further to go.

Let me try to explain what I suspect is needed to further the disclosure of rights for people with disabilities. Today disability is typically 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 cured medically (by medicine or medical procedures and technological assistance) at an individual level, or controlled (by various technological devices or a prosthetic aid) 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”, the social model, by way of contrast, focuses on the seemingly infinite number of social processes and dynamics that are the social context of disability. The social model is empathic in that it is driven by an awareness that disability discrimination and prejudice is augmented 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 dis-utilities upon people with disabilities. Where the medical model dominates there is a belief that people with disabilities may never attain an acceptable social status without a complete cure. This leaves those that cannot be cured, with an impossible dilemma which leads to their social, economic, political and cultural marginalisation.

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 somehow inferior because I could not in my bodily movements achieve what is “normal”.

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 52-years-old. I have completed a PhD, which is usually considered to be a very high honour for even for 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 even an illusion that has been created by some creative 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 model of treatment, as it should, does have a positive impact on the lifestyles of people with disabilities. In this regard it should not be completely 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 diagnostically, to prevent the heart attack, certainly remains within the medical model. In other words, it is the interaction between the medical and social models of disability that is important. The problems I am talking about arise when the medical model displaces the social model.

Immigration lawyer Steve Cohen said ‘I’m not disabled and proud, I’m disabled and pissed off!’ I would agree with Steve when the medical model of disability prevails. Still, I want to affirm that hope rises with parts of the social model of disability.

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 to 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 adequate collective assistance that can best be brought together by means of State assistance. 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 simply too complex to rely upon actions that are suggested or sustained by merely by one political approach or model.

(This article is written with thanks to Bruce Wearne and Steffan Irugalbandara)

About the author: Dr Peter Gibilisco is an Honorary Fellow University of Melbourne. He was diagnosed with the progressive neurological condition called Friedreich's Ataxia, at age 14. The disability has made his life painful and challenging. He rocks the boat substantially in the formation of needed attributes to succeed in life. For example, he successfully completed a PhD at the University of Melbourne, this was achieved late into the progression of the disability. However, he still performs research with the university, as an honorary fellow. His new book is called The Politics of Disability.