Interview with Dr. Alan Clarke of New Zealand, Physician & Independent Living Advocate
By Laura Hershey (laurahershey@cripcommentary.com)
Dr. Alan Clarke has strong opinions about disability and rehabilitation -- and he comes by them honestly. Clarke is a former professor of surgery at Otago University and dean of the Christchurch School of Medicine. In 1991 he sustained a spinal cord injury, which changed the course of his career. Eventually he became executive director of the New Zealand Spinal Trust and clinical director of the Burwood Spinal Injuries Unit. In his medical work Dr. Clarke has been a strong advocate for patient-centered rehabilitation and for maximizing independence and well-being.
LH: How long have you been a physician? And what were your goals when you first entered the medical profession?
AC: When I left school at the end of 1950 I really wanted to be an architect but the medical influences in my family were very strong as my father was a surgeon and my mother was a scrub nurse. I applied to get into Medical School at the end of my first year at University not expecting to be accepted, because my school grades reflected my preoccupation with sport rather than my academic ability! I still think somebody made a mistake, but I had a most enjoyable time at Medical School and did reasonably well and surprise, surprise, went on to train as an academic surgeon.
LH: How did your own injury alter your career goals, and/or your approach to your patients?
AC: My first "injury" was in 1979 when I had radical surgery and radiotherapy for cancer of the bladder, and was given a 20% chance of two-year survival. That focused my mind! I found that I was unable to perform major surgery with the same "stamina" as previously so in 1985 I resigned the Chair of Surgery and my university professorship which I had held since 1970, and accepted the Deanship of the School of Medicine at Christchurch. So at the time I fell off my roof on Sunday afternoon, 14 April, 1991, and became a paraplegic I was not involved in clinically looking after patients. I was looking after embryo doctors and trying to impress upon each one of them their personal responsibility to learn.
Two years after I became a paraplegic, Christine Smith, general manager of Burwood Hospital came into my office at the medical school and said that she was going to make me an offer that I couldn't refuse and I didn't. She asked me to be director of the Spinal Unit and after a few milliseconds deliberation I accepted and started a whole new career and voyage of discovery. Even then I had no idea how relevant my experience in the medical school with self-directed learning would be to my approach to patients at the Spinal Unit.
Rehabilitation in a learning not a medical process
In the last ten years I have learned that rehabilitation from whatever condition is a learning and not a medical process. Like all learning, nobody can do it for you. Shortly after I returned to work after my fall, an old lady said to me, "You are very lucky at your age becoming a paraplegic! You can start life all over again. Not many of us get a chance to do that." That was the beginning of the second lesson. Stop dwelling on your misfortune, disability and what you cannot do and start learning to identify what you can do and do it. Burwood Hospital was the Division of Disabilities of Canterbury Health and at my request Christine changed the name to Division of Abilities.
LH: Have you encountered barriers and/or discrimination, based on your disability, in pursuing your medical career since your injury? Do you feel there are significant barriers which keep people with disabilities out of the medical profession?
Disabled Kiwis in the medical professions?
AC: Barriers and discrimination? Not really. I think if a person is determined he or she will find a niche. I know of two wheelchair people who completed the medical course. One is a GP and the other is a cardiologist, and it is possible for a deaf person to be a radiologist and a blind person to be a counselor. In my case I had developed a lot of knowledge and skills over quite a long career and they were valuable in the clinical context of the spinal unit. I was not qualified to do spinal surgery, to look after people's bladders, to look after the ventilators of high quads etc, but I could act as a foreman in the "workshop" and be heavily involved in clinical care of recovering people, supervising the quality control on behalf of the customer. In this role the wheelchair acted as a useful prop improving my credibility! However, our Medical Council will never recognise me as a rehabilitation specialist.
All people are sovereign human beings
LH: In the article I read, you were quoted as saying, "rehabilitation and successful living independently [are] an educational or a learning process -- not a medical one -- and in this country it has been unnecessarily medicalised." You also said, "When society... creates a 'disability sector' in which to put all disabled people to make sure they are happy and managed well, it has the opposite effect -- because people don't like being managed. All people are sovereign human beings." To what extent do you think the medical profession is denying sovereignty and self-determination to people with disabilities, by over-medicalising their lives?
Independent living begins upon escape from the professionals!
AC: When one suffers an episode of illness or injury and lands in a hospital one is "captured" and health professionals have difficulty letting go, for whatever reason. Following up and maintaining care is a form of defensive practice in case of litigation, and that is understandable. But independent living for persons with disabilities is not possible until they escape from their professionals. To do this they must assume responsibility. When you are drowning you need to be saved by a professional lifesaver. When you have been saved you need to learn to swim and the lifesaver can advise but he can't do it for you.
Recovering patients and people with disabilities must realise that they own their clinical problem or disability, whoever it was that pushed them off the roof. They are therefore the major stakeholder in outcome and the "chairman of the board". Doctors own the clinical task, and are also stakeholders in your "outcome", but they only stand to lose their reputations. You stand to lose your life! Failure to escape leads to dependency, frustration and anger which alas is rife in the "disability sector".
Philosophy of diversity renders idea of disability unnecessary The concept of sovereign human beings is accommodated by the philosophy of human diversity which renders the idea of disability unnecessary. "Human diversity" invites society to look positively at what people can do. "Disability" invites pity, patronisation, compassion and the need to manage, all of which makes people with disabilities feel bad about themselves. So the great discourse on disability is taking place in the wrong arena... it should be about ability and diversity.
The medical and social models of disability have no validity in themselves but simply represent differing views and approaches within the wider human debate. Neither "model" should by itself be used to formulate policy or action. For explaining all this to doctors I have developed the Ferrari analogy. I am a Ferrari! The Ferrari is a very special car which requires a higher level of expert maintenance than a Toyota Corolla. I am a paraplegic and a very special person who requires a higher level of expert maintenance than most of my friends. I am not a damaged person and I am likely to be a little upset if somebody else decides to allocate me to the panel beater's yard. I am a Ferrari. Ferrari engineers don't own the Ferraris they service, and my doctors don't own me. The Medical profession is very uncomfortable about all this!
Necessity of "escape with dignity"
LH: Is there an ongoing antagonism between people with disabilities and the medical profession? If so, what can be done to reconcile the two groups?
AC: There will always be ongoing problems between the health professions and people with disabilities if people with disabilities are unable to "escape with dignity". This is extremely difficult even for a person in my position because the health professions are so very powerful.
LH: In your current work, what are some of the practical ways that you try to ensure that disabled people are in charge of their own rehabilitation process?
AC: I promulgate the above doctrines. The most important project at the moment is building a million dollar centre for research and learning on our hospital campus FOR PATIENTS, THEIR FAMILIES, FRIENDS, AND CAREGIVERS. It will be so good that the professionals and research students will need to use it too!
LH: What are some of the biggest barriers which New Zealanders with disabilities must confront in order successfully to live independently?
AC: The biggest barrier for people with disabilities is themselves, - to believe what society tells them that they are disabled, and that disability is a social problem. If they believe that, they will wait for social engineers to fix it, which of course will never happen! They must consider themselves to be Ferraris!
Independent living in New Zealand?
LH: What positive opportunities for independent living are available to New Zealanders with disabilities?
AC: Life is full of positive opportunities in New Zealand for people with disabilities to live independently. However only 25% of people with spinal cord injuries get back to work which is a measure of how unsuccessful our rehab is. Not good!
LH: What do you feel has been your own personal, biggest contribution to the community of people with disabilities?
AC: My most important contribution may be to draw attention to the dangers for people with disabilities which lie in politicians trying to get mileage from the "social model of disability". Also to emphasise that happiness is the only satisfactory outcome for people with disabilities, and that will not be achieved unless they are in control and consider themselves to be very special people. They are all Ferraris!
LH: What do you feel has been your biggest contribution to the medical profession?
AC: I think I am currently a pain in the ass for the medical profession. The best thing that I ever did was to introduce self-directed learning to an over-structured and over-taught medical course, thereby increasing the power of the proletariat and reducing the power of the teaching aristocracy.
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