The derogatory legacy of the medical model of rehabilitation – stories from Richard’s life

1978 – Seminar on “Consumers’ View of Rehabilitation” at the Memorial Hospital, North Adelaide

The rehab system fails disabled people’s potential

First insult

Recently I attended a national rehabilitation conference in Sydney as part of my work. On the first night, all the dignitaries and members of the conference gathered at Sydney University to hear an opening speech by the Minister for Social Security under the chairmanship of a distinguished Justice involved in rehabilitation politics. The usual last-minute flaps were on, officials bustling around reserving seats and then un-reserving them as they found there weren’t enough dignitaries to occupy them.

Three of us turned up in wheelchairs and placed ourselves in a good position to hear and see. Steps prevented us from being anywhere but the first row.  “You can’t stay there,” said the official. The three of us who used wheelchairs were removed to the distant far side of the auditorium and placed behind the speakers’ podium. As far as the organisers were concerned, we had been effectively put out of sight, making the whole area neat and tidy again.

It didn’t matter to the organisers that we three wheelchair conference payers, plus a blind man and his dog, were unable to see the speakers’ faces, the slides shown, or to hear adequately.

Second insult

During the $17 final dinner of this conference which was held in the hallowed Great Hall of the Sydney University, once again we wheelchair people were put at the back after negotiat­ing the entrance steps. The University Chancellor intoned the word ‘correctional’ a number of times in his hour-long after dinner speech. Usually, I think of that word in terms of prisoners, however perhaps inadvertently he had hit upon a very real attitude in rehabilitation. This pompous gentleman finally referred to the attending group of handicapped people as “splendid examples of correctional rehabilitees, and a great tribute to the wonderful people who dedicated their lives to helping the afflicted of our community.”

The facts

The interesting fact was that none of we handicapped people who attended that conference had ever been through a rehabilitation program. One had been to neither primary nor secondary school, but after leaving his job as a bottle washer in the university kitchens to attend lectures has become a Doctor of Psychology at Queensland University.

Power elite gain prestige while discriminating

Handicapped people expect and can handle discriminatory attitudes displayed by the general public.      What is frightening is that these insults came, not from the general public, but from the power clique which purports to be interested and expert in the field of rehabilitation.  I must ensure that I have distinguished between the conference leaders and the many genuinely interested and concerned attenders whose intelligence was equally insulted.

Insults lead to Richard becoming a consumer advocate

Although it wasn’t the role I initially attended with, I returned home at the end of the conference a confirmed consumer advocate. I had seen some real power politics at work and how decisions affecting the handicapped can be made by people primarily concerned with their own empires.

Perhaps you might say those things only happen in tough old Sydney.  Here in South Australia, we are much more cultured, and people oriented.  Some weeks ago, I attended a seminar of questions and answers held by the new Health Commission. Only two questions dealt with consumer problems and the rest of the morning was spent discussing rules of hospitals, job guarantees, finances, cliches about evaluation, and professional boundaries and overlaps.     

Because I see this as an imbalance, at each opportunity I ask Dr.  Shea about consumer representation on the Health Commission. Each time he gives me much the same answer:   “It is very difficult to pinpoint who is the consumer.” With great respect, I find it difficult to see that this is any more difficult than pinpointing the full professional representation which occurs normally.

Self-respect and freedom of choice of action

Most relevant to this conference “Rehabilitation for What?” is the question of quality of life for disabled people.  To my mind, there are only two simple criterion – self-respect and freedom of choice of action. Approximately 120 people a year who have a variety of physical and neurological conditions are re-entered to the community from the Northfield Rehabilitation Unit. These people have had large sums of money, time and effort spent on their behalf in order for many of them to go home and pass the rest of their lives in front of television sets. Where are the next steps to get people back into study, work, relationships and fun?

Limits of medical rehabilitation model

There are a number of reasons for this, but one is that the Northfield service concentrates on medical rehabilitation. It is correctional rehabilitation in as much as medical conditions have been corrected to an agreed goal to enable the family to cope. Unfortunately, in this State, rehabilitation is a sectional process with a medical part, a vocational part, and a social part. Most people who need it, receive the first part, but our provisions or a holistic approach are not adequate, resulting in a system that tends to break down the confidence of the person undergoing rehabilitation.

To begin with the emphasis is on the doctors and nurses, then the physiotherapist becomes the key, moving to the O.T., social worker, etc. This assembly line approach dehumanises ‘the product’, adding to the feeling of expertise on the professional’s side and inability for self-determination on the product’s side.

How does our ego cope with drastic change?

Dr. Alex Comfort, whom most of you will know for his book, The Joy of Sex, likens the ego to driving a motor car in his unpublished manuscript I have read. Our ego chooses a body style much as we choose a style of car and drives that body or car according to the style we choose.  When somebody has a trauma significant enough for rehabilitation, one is not only dealing with the dents and structural flaws caused by the accident but is also dealing with sudden alteration of body image, which therefore alters the driving force.  One may even be dealing with a complete inability to drive.     

Just imagine yourself as a well-dressed Volvo owner who is suddenly forced to become a pajama-wearing owner of a beat-up Volkswagen, knowing that is going to be your new vehicle for life. Our society does not particularly reward adaption, so none of us are naturally able to cope when sudden change occurs. I feel the rehabilitation industry drastically underestimates how much inner change is going on in the people in its care and how their ego needs as much help to adjust as their bodies do.

Derogatory, disempowering labels and controls

We know that the ego is an important factor in rehabilitation. Let’s see how the industry recognises this fact. Just to make sure that the person feels different, we give her a new title, ‘patient’.    If she goes to look up this new title and therefore body image, she finds out that she is, ‘calmly tolerating delay, confusion, inefficiency, bearing or enduring pain or trouble without complaining, losing self-control, making a disturbance, etc., refusing to be provoked or angered, as by an insult, forbearing, tolerant, receiving action passively.’

I remember when I was lying in my iron lung in the Northfield Infectious Diseases Hospital after I was paralysed with polio. A person in my ward, who in a moment of frustration, decided this ‘patient’ image wasn’t for him and raised his voice over a disagreement with nursing staff over priorities in being dressed. The Sister came in, and in leaning over him, pushed on his stomach to stop him creating a disturbance.

He then very efficiently broke her nose, much to the surprise of the physiotherapist who had been underestimating his strength. As a result of this one incident, this person’s sanity was put in question by the hospital authorities.   

Powerlessness of disabled people in institutions

Any person who lives in an institution has a great many more frustrations than somebody who lives outside. There are few sexual outlets and for most incapacitated people, few physical outlets. It is recognised as being quite normal to have emotional outbursts. Within the confines of our own home, we might even throw things about now and then without experiencing any major recriminations.  What great insight and empathy that institution had when it further restricted his leave and privileges as punishment.

Now let’s look at the word ‘professional’.   From the consumer’s point of view, we are beginning to think an undue amount of the services are going to the professionals in the form of higher and higher salaries, and I include my own salary rise which I hope to get soon. We find that it means one who works in a specified occupation for pay or fee. Usually in our society, those who pay determine what happens, and those who receive money try to accommodate the needs and wishes of those who pay.  Who then is the servant in the rehabilitation system? Who gets the service? Who do the services provide service for?   

Let me tell you about my 32-year-old friend with Muscular Dystrophy who now lives in the Northfield Wards. He is not allowed to lie down during the day when he is tired.  If he does lie down, he has to remain there until the next morning.  There are apparently two reasons – one he might dirty his counterpane and two, the staff don’t like the bother of lifting him. It is my contention that it is through my friend’s impairment that staff are earning their living by being a service to him. However, as a patient he can’t demand, so he suffers in silence.   

Dynamics of dependency

Institutional staff who are crossed can make life very unpleasant for a dependent person.  As workers in the health and rehabilitation sector, we should be more honest. It is the consumer who is giving us all our livelihoods. It’s about time that we welcomed the consumer’s participation in planning, implementation, and assessment of our work.

A member of the Club for Physically Handicapped, which is a new consumer body where information and opinions are shared in the safety of a peer setting, told me of an experience she had in the Spinal Injuries Unit. Each morning at one stage in her rehabilitation, she was pushed by the Occupational Therapist to practice cooking skills in their expensive kitchen to practice activities of daily living.  As you know, dinner in a hospital is at 4:0O p.m. This girl and her friends in the Unit had gone out, bought steak and some other food they felt like eating, but were refused permission to cook in the fancy kitchen although it wasn’t in use.  

Here was somebody wishing to drive her own destiny, was two weeks away from going into independent living, and yet was thought unable to carry out a skill in a real situation she had been practicing for.    There were only two alternatives for this girl. One – throw the steaks at the authority figure or two – bow under and give up the dream of doing something for herself.

Rehabilitation looks after itself, not its consumers

Why is it that we who work in the rehab field are so afraid of handicapped people’s dreams? One often hears, “Oh, she’s very unrealistic”. Professionalism is by nature conservative. This attitude is limiting to their clients who need to be trusted and encouraged to try.

After two years in hospital recovering from polio, I was discharged. I was 95% effectively paralysed, weighing a little over 6 stone. I naively referred myself to St. Margaret’s for rehabilitation where I was tested on a typewriter and failed dismally because I wasn’t strong enough to push the carriage along.    All I really wanted was the $500 which was available as a loan under the Act and some equipment. 

My request was too unrealistic for the Commonwealth Rehabilitation Service, and so I was left, aged 21, to the care of my ageing parents with no help whatsoever by any rehabilitation service. I had $200 in a bank account, training in my merchant navy career, which was of no further use, and was responsible for buying whatever equipment I needed – wheelchairs, lifting machines, etc. out of my own pocket. I had no chances of being employed in that time. I was supposed to give up any dreams for my life.

Taking control of your own choices

Survival is a very strong force, so is anger. From that day on, I decided that I could not expect any service to do anything for me, and that if I were to get through life, it would be in an armored car. I also decided to have nothing further to do with any treatment. It was sixteen years before I needed to see a doctor for medical reasons. I experimented and made my own decis­ions as to whether I’d wear shoes or leg plasters, have my feet up or down with no particularly detrimental results.

The workings of our bodies are often not as mysterious as many professionals would have us believe.    Similarly with vocational training, having decided I wasn’t going to be given a job, I set about employing myself. After a number of successful small business ventures, I decided to enter the art world and run my own gallery. 

Who knows what the potential of people in rehabilitation is if you don’t give us the chance to dream, to risk, to fail or succeed? So much human potential is wasted. Most people thought, “here he goes, dreaming again.  How can somebody with limited income be involved in a rich man’s business where the losses can be thousands per week?” Money, mobility, and social contacts are the tools of trade in the art world.  

I had none of these and I well remember Kym Bonython, the daddy of the Australian art world, giving me kindly advise that I would be broke in no time if I continued with such foolhardiness. Seven years later, I bought his North Adelaide art gallery out.