Also Human Page 15

  A doctor in an American study who walked with crutches described how on the morning of his interview for an academic position at a prestigious medical school, the search committee chairman parked at the back of the garage, rather than dropping him off at the front door10. ‘I knew by 9.00,’ reported the candidate. ‘They were marching me back and forth from one building to another, just to prove to me it was the wrong place for me.’

  Similarly, another doctor who relied on crutches described her first hospital post as ‘an environment of isolation’11. This doctor stressed that the lack of acceptance was not by patients or nursing staff, but by physicians.

  So what’s going on?

  Just as doctors unconsciously position themselves in a separate category from the patients they treat, in order not to be overwhelmed by anxieties that they too could become sick, there is a tendency for able-bodied people to position themselves as ‘other’ than the disabled in order to avoid confronting the possibility that they, too, might one day join their ranks. To quote a writer on disability, Jenny Morris12:

  It is fear and denial of the frailty, vulnerability, mortality and arbitrariness of human experience that deters us from confronting such realities. Fear and denial prompt the isolation of those who are disabled, ill or old as ‘other’, as ‘not like us’.

  But what does this mean for doctors with disabilities?

  It means that they face a double whammy. Doctors are supposed to be uber-able, not disabled.

  *

  Unsurprisingly, doctors are reluctant to admit to having a disability. For example, a report by the BMA Equal Opportunities Committee in 2007 found that ‘due to the culture within the medical profession, and the stigma attached to the term “disabled”, there is a great deal of under-reporting of impairment by doctors’13. More recently a study in a Scottish medical school reached a similar conclusion14.

  Some medical schools have introduced a ‘card’ scheme in order to empower students with disabilities or health conditions to request appropriate support15. The cards are authorised by the Dean of the Medical School and the specific wording is agreed between the student and relevant senior faculty. The idea is that the student hands the card to whoever is teaching them, who then ensures that necessary adjustments (such as allowing a student to sit down on a ward round) are made. This is all well and good but it says something about the unspeakable nature of illness and disability within medical training that such a scheme is necessary. Students can’t simply go to faculty, have a frank and open discussion about their problems and expect that their needs will be taken into account. Instead they need a card authorised by the dean, before they will be listened to. And even then, some students were reluctant to use the card, and others encountered unresponsive teaching staff. Attitudes to illness and disability within the profession are hard to shift.

  On paper, there are, of course, legal protections. In the UK, disabled doctors are protected by the 2010 Equality Act, which supersedes the earlier Disability Discrimination Act16. In the US, the relevant legislation is the Americans with Disabilities Act of 199017. But like Ian (the hearing-impaired doctor whose consultant suggested he should wear a badge saying ‘I’m Deaf’), most are reluctant to seek legal redress. Even when, in strict contravention of the law, necessary reasonable adjustments (such as the provision of special chairs, or hearing equipment) haven’t been made – disabled doctors don’t want to rock the boat.

  Major institutional stakeholders such as the BMA and the GMC are, of course, aware of the legal requirements. In fact, in the UK it was the introduction of the 2010 Equality Act that prompted the GMC to commission a major review of health and disability in medical education and training18. One of the issues considered by the review was the feasibility of granting disabled medical students exemptions from certain competencies, which would mean that they would graduate from medical school with restricted registration. The logic here is that currently medical students need to demonstrate basic competence in tasks such as skin suturing that they would never be called on to use in a number of different medical specialties (public health or psychiatry, for example). If somebody, by dint of a disability, couldn’t suture skin, but wanted to go into psychiatry, why couldn’t they be exempted from this and other such competencies at medical school, and be granted a form of registration which restricted their later career choices to specialties where suturing would never be needed?

  The GMC review recognised that granting restricted registration might allow more disabled people to join the medical profession. But the review still concluded that this was not the best way forward. It gave a number of reasons: to begin with, in pressurised clinical environments somebody might be needed to carry out a duty that they had been exempted from; second, restricted registration might lead to stigmatisation of disabled doctors; and third, disabled students and trainees consulted in their focus groups were not in favour of granting exemptions.

  Given the cultural antipathy within the profession towards disability, I would tend to agree that introducing restricted registration might – at least initially – increase the stigmatisation of doctors with disabilities. I can also see that it might take some care and planning, if such a scheme were introduced, in order to ensure that at nights or at weekends, when staffing levels were reduced, a patient didn’t need an urgent clinical task to be carried out that fell beyond the scope of the given doctor on duty. But paradoxically there is already good evidence that adjustments can be made without compromising the safety of patients. And where does this evidence come from?

  The GMC.

  The latest edition of a GMC publication entitled Achieving Good Medical Practice: A Guide for Medical Students states that19:

  Students with blood-borne viruses can study medicine, but they may have restrictions on their clinical placements, must complete the recommended health screening before undertaking exposure-prone procedures, and will need to limit their medical practice when they graduate.

  So on the one hand, the GMC rules that students with blood-borne viruses, such as hepatitis B and C, may, on graduation, need to avoid exposure-prone procedures and ask a colleague to take over, in order to ensure that they don’t inadvertently infect a patient. On the other hand the GMC argues that offering disabled doctors restricted registration could cause problems in a busy clinical environment, if some doctors can’t carry out certain procedures.

  The GMC position simply doesn’t stack up.

  What about the GMC’s argument that the disabled doctors in their focus groups didn’t want restricted registration to be introduced?

  That may be true for some doctors. But others like Jemma Saville would disagree.

  *

  Jemma Saville was diagnosed with dominant optic atrophy (loss of function of the optic nerve) during the second year of her medical degree. In a BMJ article in April 2008, Jemma was upbeat about her future career in medicine20:

  ‘My medical school has been very supportive,’ she said. ‘The staff have arranged extra teaching for me on subjects like anatomy, and provided presentations in large print so that I can read them with a magnifier. I want other students to know that, with adjustments, an impairment or disability does not necessarily rule out a career in medicine.’

  Later on that year Jemma successfully sat her medical school finals, and graduated as a doctor. But she was then informed that there were no foundation jobs that could accommodate her visual impairment.

  The following year, while she was still campaigning to be allowed to continue in medicine, Jemma’s story was included in a BMA publication entitled A Celebration of Disabled Doctors21. She remained optimistic:

  I would still recommend medicine as a career! I do believe that it will take time, but I will get to practise as a doctor eventually, and when this happens, it will set a precedent for other graduates. Even with all the fighting, I loved my medical degree. Medicine is a wonderful mix of science, practical work and, best of all, people. But I almost gave it up, becau
se it’s just such a struggle as a disabled person.

  Jemma’s next strategy was to petition the NHS to give her a foundation job (without which she couldn’t progress to her eventual chosen specialty – psychiatry). On the petition website she had this to say22:

  I don’t want to perform clinical procedures which I am not competent to do, and I certainly would never put any patients at risk. I know what I can and can’t do, and this is key to any doctor being safe. I believe that even with a visual impairment, I can be a very successful, inspirational doctor. I just need to be given the opportunity to prove this.

  Jemma was never given that opportunity. In the end she gave up, and retrained as a teacher. When I contacted her, she had this to say:

  ‘I’m actually very happy. I now have a hugely rewarding job which I love – teaching is my passion,’ she told me. ‘It’s just a shame medicine couldn’t offer me that.’

  If Jemma had lived in the US, her story might have had a different ending.

  Tim Cordes was born blind. In 1998, he applied to the University of Wisconsin Medical School. According to a clinician on the admission review committee, his application was exceptional, with extraordinarily high Medical College Admission Test scores, a near perfect undergraduate grade point average, and outstanding prior research experience in antibiotics. Panel members assumed that every medical degree programme in the country would be fighting to get him – but they were wrong. Cordes applied to eight medical schools, but was turned down by the other seven. Only the University of Wisconsin was willing to offer him a place, and even there, some panel members were bitterly opposed to the idea of accepting a blind student. Sadly, opposition wasn’t restricted to faculty members; on his first week, a fellow student sidled up to him in the canteen and asked, ‘What are you doing here?’

  In an article in the Braille Monitor in 2010, Cordes describes how he managed to complete his medical degree23:

  I did anatomy by touch, feeling the nerves and muscles, doing some of the dissections. I was the guy who reached into the chest cavity up to my elbow to pull out our cadaver’s lungs. When it came time for testing, I had the same test as everyone else, and felt and identified the muscles and nerves that way … Much is made of the visual nature of medicine, and although we would love 100 per cent accessibility, the vast majority of information is easily accessible with speech software, electronic documents, CDs and the Internet. They don’t tell you that, but it’s true.

  In addition to technical innovations, Tim was also helped by ‘visual describers’ – assistants who went through the clinical rotations of medical school with him, describing what they saw, and guiding him into the operating theatre while he held his sterile hands aloft to avoid contamination.

  Cordes didn’t only qualify as a doctor – he was also accepted on to an extremely competitive combined MD/PhD programme which trains practising clinicians to be scientific researchers. While working on his PhD analysing the structure of a bacterial protein, he devised a computer program to convert visual images of protein structure into sounds – going up and down the scale, and getting louder and softer, to explain the branching arms of the protein. This software is now available to help other visually impaired scientists.

  But even with all these extraordinary achievements, Cordes still encountered resistance when applying for psychiatry residency programmes:

  ‘I was interviewing at a residency in the north-east, and the chair of the department wanted to meet with me. After some pleasantries he said, “You know, I just don’t get it. How are you going to know what’s going on with a patient?”

  ‘I paused, and then I said, “Well I know you’re reading your email right now as you are talking to me.” That opened a door.’

  Eventually Cordes obtained a place on a residency, finished his training and is currently a psychiatrist in a Veterans Health Administration hospital, specialising in addictions. Dr Dean Krahn, the Head of Psychiatry at the hospital, has commented on the particular skill that Cordes brings to this work24: ‘Given that he can’t see, I think that he’s more attentive to everything you say … He listens closely for the sound of your breathing, the tone of your voice … He senses a lot about the patient, and has a unique way of picking up on things other doctors might miss.’

  Krahn then went on to describe why Cordes is especially attuned to treating veterans with addiction problems:

  ‘There’s a lot of pressure on people with addictions … They’re often told that they just need to change, that they need to overcome that hurdle in their lives. And their response? They’ll say, “Doc, you don’t know what it’s like. It’s not a hurdle I can just overcome. It’s just too hard” … But you know what? They tend to say that a lot less to Tim … It’s like his patients are thinking to themselves: “This guy’s been blind since he was a little kid, and now he’s a doctor. If he can do that, then I can stay sober today.”’

  *

  Clearly Tim Cordes is an exceptional human being. At the same time, when we think about people with disabilities, we need to guard against a rhetoric of ‘Anything is possible’ or ‘There is no such thing as “can’t”’. Just as not everybody has the academic ability to train as a doctor, not all blind people could match Tim Cordes’s achievements. Instead, we need to recognise the complexity and diversity of human life and avoid polarised thinking. To quote clinical psychologist Brian Watermeyer: ‘Disabled people remain unknown within a view which constructs them – in an unreal manner – as heroic or helpless25.’

  If I think about Ian, or Jemma Saville, or any of the other doctors with disabilities whom I have encountered, I feel saddened that the culture of medicine has frequently failed to acknowledge their individual potential – or appreciate what they might be able to offer the profession. If Jemma Saville had lived in the US, perhaps, like Tim Cordes, she would have been able to make use of her medical degree, and qualify as a psychiatrist. And if Tim Cordes had lived in the UK – he would never have been able to train as a doctor. What a loss. What a waste.

  There is one point, however, with which I am in full agreement with the GMC, and that is the assertion that, if students with disabilities were offered restricted registration, ‘the understanding of what it means to be “a doctor” could be completely changed’. Inadvertently, this statement gets to the heart of the matter. Restricted registration would allow doctors like Tim Cordes to qualify in the UK – a doctor who has no sight whatsoever. It would allow Thomas Strax – the wheelchair-bound physician with limited muscle control – to practise in the UK. It would allow people who have no hearing and communicate through a sign-language interpreter (as is happening in Canada) to join the profession26. And countless others besides. Including these individuals in the profession would undoubtedly involve radical shifts in what it means to be ‘a doctor’.

  But this is never going to happen until doctors are given more effective ways of managing their anxieties. Doctors who are currently healthy and able-bodied can become unwell and disabled at any time. So in reality, the roles can be reversed, and the doctor – or somebody they love – can become the patient. This highly unwelcome thought has to be kept at bay if they are to cope with the psychological demands of treating patients. Currently the culture of medicine manages this potential anxiety by reifying the difference between doctors and patients as if they were separate species.

  And sick or disabled doctors, whose very presence challenges this fundamental split, get pushed out of the profession.

  6

  Leaky Pipes

  TALL, SOBERLY DRESSED in dark colours, with no visible jewellery except a plain gold wedding band, Bridget didn’t seek to mark herself out. Neither did she attempt to shove her success down your throat. Bridget wasn’t the sort of person who needed you to know quite how extraordinary her achievements had been. But they were extraordinary; Bridget was one of the most gifted doctors I’ve encountered over the past twenty years.

  Shortly after the birth of her second child
Bridget contacted me. She wasn’t sure whether or not she wanted to continue in her current job. Neurosurgery. Competition in the specialty is intense, and Bridget was one of a handful of women across the country who had obtained a much-coveted training position. But five years into her training programme, Bridget was having serious doubts about whether she wanted to be a neurosurgeon for the rest of her career.

  In our first session, I asked Bridget why she had chosen medicine. She told me that becoming a doctor had been her ‘default’ option; her father was a surgeon, as was his father, and as she had excelled in all three sciences at school, studying medicine had always been a possibility. The problem, however, was that Bridget didn’t only excel in the sciences at school – she was equally strong across the board. Had she wanted, she could have studied foreign languages or history or mathematics at university. And if that wasn’t enough, she was also a gifted violinist and pianist.

  At secondary school, her physics teacher (who had a PhD in the subject) recognised her talents and cautioned her against studying medicine. He suggested that she might find a subject such as theoretical physics more intellectually stimulating. But attracted to the breadth of medicine, and the wealth of opportunities a medical degree opened up, she ignored his advice.

  As soon as she started her medical degree, the words of her teacher started to ring true. Whilst the volume of material to learn was enormous, there was little opportunity to study any topic in depth. Bridget found the work easy, but monotonous. In a genetics seminar she once asked a question which displayed such an advanced level of knowledge that the tutor assumed she had already completed a PhD. In reality she was only a second year medical student.