Analysis of grief following an impairment that creates a dented self-image along with dependency. Rehabilitation has little interest in people’s egos, yet these need to heal too. Anger can be a positive force if the true causes of discrimination and barriers are met with pro-active strategies for each individual

21 September 1982 – Panel in seminar on ‘Grief in Disability’, Memorial Hospital

Dependency and dented self-image fuel grief following disability

Australian rehabilitation emphasises the medical and charitable models where the goal is to ‘get better’ and ‘be grateful’. The great egalitarian and independent spirit of the sun-bronzed Anzac has no place in the disability area. The dream of the United Nations International Year of Disabled Persons – IYDP 1981, with visions of disabled people deciding their own destinies and living normal and independent lives wherever possible, is fast disappearing in the cold light of the 1982 dawn with its adherence to these old models.

It seems in this country, there is an automatic assumption that people with disabilities like to be helped and that we should be eternally grateful to our helpers. Just imagine that “bang” tomorrow, someone has to take you to the toilet, dress you, answers the telephone for you, does your banking, decides and does your shopping. You know too, that none of this is for a short, restful time. For the rest of your days, you will play the role of being forever grateful, while your helper feels warm and fuzzy building up “Brownie Points” for the Queens Honour list.

These are the essential dynamics of the Australian charitable model. This loss of independence constitutes the major factor in recognising grief following disability. The surgeon’s triumph is too often the rehabilitationist’s nightmare, with the charitable bodies rarely dipping into the too hard basket of care.

Dependency presents shock and trauma to the ego

Alex Comfort, a serious writer on old age but better known for his more sensational work involving the “Joy of Sex,” is one of the few academics recognising the importance of the ego in any rehabilitation process. To describe the effects of trauma on the ego, Comfort suggests we imagine ourselves as suitably dressed owners of a Volvo or Jaguar. Our self-image is probably one of independence, individuality, prestige, wealth, intelligence and success. “Bang” trauma strikes, and we awaken the pajama-clad owners of battered Volkswagens.

If I were a social planner or evaluator of rehabilitation programs, I should be greatly interested in what is being said tonight. Is there actually anyone here who is involved in policy or evaluation? Perhaps we are witnessing a major national problem where planners are often divorced from field of reality and forget to communicate with the most important and concerned group – those who live it.

Source of grief is much more than physical loss

What we are hearing tonight from our panel of speakers is not only a plea for the recognition of grief in disability but a need to recognise the true source of that grief. It is not the loss of limb or function which we are grieving, but the loss of independence, self-determination, status, financial position and basic opportunity which is making us angry.

One glance at Maslow’s hierarchy of human needs makes the reasons for the grief and anger of people with disabilities very clear. We rarely get beyond the first step, the bottom rung of the ladder focusing on food, shelter, clothing, in other words, survival. Our society for the self-actuating layers of his model caters mainly for the Anglo-Saxon, working, fit, educated young person. What of those of us who have not had the opportunity to be that, via background, class, opportunity or disability?

Structural discrimination

The question remains: is this separation and dependency-building for those who have disabilities unconsciously deliberate? Do we in fact need a passive, dependent proportion of our population for the health industry to feed upon, similar to the aims of industry in general for a large pool of compliant unemployed to help keep down wage demands.

If the actions of the rehabilitation and charity sectors are not deliberate, ask the Sanitation Engineer or the Director of Nursing if titles and labels are important or not to self-esteem and indeed, their pay packet. I have further questions:

  • Why do they have so little concern for the egos of traumatised people?
  • Why do we continue to dress newly traumatised people in backless white gowns when we know the importance of dress to self-image and ego?
  • Why do we separate and dehumanise people by calling some ‘patients’ when we know the importance of belonging?
  • Why do we persist in fortnightly reinforcing society’s attitude of keeping disabled people down and out with an inadequate in-valid pension?

It is these type attitudes which this panel is identifying and recognising as the real cause of grief. I conclude Australia is content to continue a regime of structural discrimination against people with disabilities.

Anger against unnecessary barriers

My anger, which is perhaps related to the grieving process following loss of function, is not directed towards the natural phenomena of the polio virus which put me in a wheelchair. In fact, living with a disability in many ways adds a spice and challenge to life. My anger is directed towards a society which builds unnecessary barriers, physical, educational, legal or attitudinal to my passage through life.

I’m sure a psychiatrist would explain my original anger in the 1950’s at the ridiculous hospital regulations and patronising attitudes as a transference of anger at my inability to walk. That may well be, but it is also undeniable that institutional care does not allow for “normal” living and the aim of rehabilitation is for the restoration to normal life as far as possible. The sexual side of life for example, a basic need according to Maslow, is totally denied. No patients, only staff can have temper tantrums and raise voices without fear of a sedating jab.

Attitudes are a source of grief

Institutional survival demands passive acceptance and maintaining a subjugated demeanor while having things done for you – the opposite behaviour necessary for successful rehabilitation.

The problem of attitudes however doesn’t only lie with institutions. Tony has already told of his family dis-inheritance following his becoming disabled.

A Melbourne friend of mine who uses a wheelchair attended a party when she had a broken leg and she told people it was from a skiing accident. The difference in the way the party goers treated the short-term wheelchair occupant to the long-term one she normally is, so impressed my friend that her party wardrobe now “sports” a removeable cosmetic plaster cast.

Lack of employment as a source of grief

These days anyone is fortunate to have a job and this lack of work and the financial and other benefits which go with work can be a source of grieving. Even when disabled people manage to gain work their potential is rarely encouraged. Other people usually decide what you can and can’t do.

When I first joined the Health Commission as an Administrative Officer, I accompanied the Royal Adelaide Hospital’s Director of Rehabilitation on his ward rounds. As any seafarer will tell, nurses have a “good time” reputation, but even I was shocked when each of the ward sisters tried to get me into bed. Without exception as we wheeled around the wards, we were greeted with, “Which bed is he for, doctor?” In those days in 1975, the nursing staff could only perceive someone in a wheelchair as a patient, not an administrator who used a wheelchair.

Self-employment as a source of dignity

For two decades living with my disability, I made a living by self-employment ventures, as no one was game to employ a quadriplegic. I give credit to the free enterprise system for its flexibility and its welcome. Basically, if you can stand the heat of the kitchen, you are welcome to thrive.

I was fortunate to take that path in my own efforts to be independent and found that business is not as hard as is sometimes made out. In fact, because I had to often do things in a different way, the novel approach often appealed to the public. Being unable to fetch and carry I operated one of the first self-service businesses in Adelaide.

It is a pity that more disabled people don’t avail themselves of the available grants to operate their own businesses.

Anger can heal when the real causes are acknowledged

I don’t apologise for giving a rather hardline, angry talk tonight, for it perhaps emphasises that anger will be present when the grief process is being recognised. The important fact, I believe, is to recognise the real cause of anger and tackle those causes with innovative, flexible solutions for that person.

To end positively, we can all try to think about and implement solutions other than providing yet more services which tend to benefit those who are employed over those who are being helped.