Ian Basnett. Handbook of Disability Studies. Editor: Gary L Albrecht, Katherine Seelman, Michael Bury. Sage Publications. 2001.

My Starting Point

My pager went off. It was a nurse from the ward. “Hi, Dr. Basnett. Patient from ITU for you to admit.” “OK. What’s the problem?” I asked. “Chest infection. Oh, and he’s paralyzed, been in before.” I walked confidently to the patient’s bed, and said, “Hi, I’m Dr. Basnett. I have to take some details and examine you.” “Yeah,” he replied with disinterest in an east London accent. I used a piece of cotton wool to examine his nervous system and felt a sense of horror come over me. “You can’t feel anything below here on your shoulder? You can’t move your legs at all—how much can you move your arms? I see not much. How long have you been like this?” As I continued, I became more horrified. This man was in his late 20s and was quadriplegic. Sensation, with all its pleasure and pain, was completely absent. Below the shoulders may just as well not exist for this man. How could he do anything that was fun or valuable? Life, as I understood it then, couldn’t exist. I didn’t bother to ask him. I was stumbling and awkward with no understanding of disability. I didn’t know, nor could I have imagined, how he got out of bed at all, let alone how he did it daily and drove to work.

That was in the early 1980s. I next met this man in a spinal unit in 1985, as I was pushed to the computer next to him in occupational therapy. A few months earlier, I had severed my cervical spinal cord playing rugby, and I was quadriplegic—slightly more impaired than was my former patient. He sized me up, as patients in spinal units do, coming to a quick assessment of my “level.” He didn’t recognize me, without my stethoscope, white coat, and veneer of assurance. I couldn’t bring myself to remind him. He told me he was in for a short stay with a skin problem but was looking forward to getting home. He was moving soon, and he had just started driving again.

This chapter is, in part, a personal account of my journey from medical student and physician to disabled physician and member of the disability movement. However, I will use this as a vehicle to reflect on my own medical training, practice, and attitudes in relation to disability. Later, I will contrast this with my experiences as a disabled person. I will draw on some of the evidence of the impact of training on health care professionals and their attitudes toward disability and discuss why this matters and how it can change how disabled people are viewed. I argue that the predominant influences on health professionals are the norms of society, often reinforced by training and practice and biased predominantly by seeing disabled people when they are sick. As in my case, health professionals can develop a view of disability that is at substantial variance from its reality for many disabled people. This can affect vital decisions involving health professionals that affect disabled people. These range from decisions at an individual clinical level, a policy level (including rationing), and at a health system level. I describe my own experiences as a medically qualified disabled person and contrast this with my earlier attitudes and beliefs. I conclude by making some proposals for improving medical training and health care for disabled people. Although I discuss health care in general terms, I will concentrate on medical health professionals. The chapter reveals my own conflicts resulting from a background that is medical and sometimes curative.

Training Health Professionals

My medical training was traditional and typical—biomedical and hospital dominated. The disabled people I came into contact with were usually ill or institutionalized. I was taught about body systems and their failures but rarely about the interaction between our bodies, the environment, and society. A few social science and public health classes aside, treatment of the individual was essentially dominant. I had one memorable afternoon with an occupational therapist. We ran around with empty wheelchairs, “learning about obstacles.” Many of us used it as an opportunity to play “bumper chairs.”

In my clinical training, I remember one patient very well, a young disabled man who was regularly admitted to the acute ward for respite care. I understood nothing of the environment from which he came, rarely saw him dressed, and learned only how his nervous system was failing him. The attitude of the ward staff and physicians was universally benign, regarding him with great fondness, but rather like one might be fond of a respected and much-loved pet. The consultant, who had known him longest, was perhaps a little more enlightened. I presented his case to the consultant, explaining the onset of his disease and concluded by saying, “He gradually went downhill from there.” The consultant forced me to ask a little about this young man’s aspirations and discovered that he was able and had a great deal more insight than me (which wasn’t difficult). However, the consultant’s view of this young man was that he was an intelligent man whose life was a tragedy as a result of his disease and subsequent disability, and he deserved the best care. I remember the difficulty I had persuading the young man’s primary care physician to assist with his anticoagulation. The physician viewed it as “overactive” intervention given his disability. For me, this was part of the tide of disempowered disabled people in hospital or residential settings that we witnessed as students.

Some studies, although now rather dated, have shown medical students to be more uncomfortable, more uncertain, and spending less time with disabled people than they spend with patients who don’t have disabilities (Kleck et al. 1968, 1969, quoted in Hordon 1994). Some research from Australia and Leeds has shown increasingly positive attitudes to disability during medical training, although lacking long-term follow-up (Hordon 1993; Mitchell et al. 1984). However, a cross-sectional study found that the attitudes of senior students and junior doctors were no better than those of junior medical students (Duckworth 1988). Other research has found increases in cynicism (Rezler 1974; Wolf et al. 1989), loss of humanity (Diseker and Michielutte 1981), and loss of empathy (Perricone 1974). In a review, French (1994) concludes that the attitudes of health professionals are similar to the attitudes of the general public and may become more negative as professional education proceeds. Some studies (but not all) and commentators have concluded that the nature of the contact between health professionals and disabled people is what matters. They suggest that contact as caregivers leads to more negative attitudes toward disabled people, in contrast to contact with disabled people as equals (Donaldson 1980; Eberhardt and Mayberry 1994; French 1994), and point out the power imbalance in this relationship (Eberhardt and Mayberry 1994; Roush 1986). It is likely that attitudes formed in these sorts of situations highlight functional limitations and the differences of disabled people, rather than contact, which emphasizes the strengths and similarities of disabled people. It is noticeable how little research there is in relation to training physicians; this may be partly explained by some professional groups specializing more in disability (e.g., occupational therapists). However, I suspect it also reflects the low priority accorded to disability and that it is usually considered in terms of medically defined impairments.

My experience and the evidence suggest that for many physicians, the medical, individual, and tragic view of disability (Oliver 1990) is reinforced at the end of their training. It could be argued that, given that this dominates most Western societies, it would be unreasonable to expect the medical profession to be any different. Frequent contact with disabled people has not changed that. And why should it? Contact is often when people are sick, and physicians have been subjected to an intensely individualistic and biomedical model. There are others who would be less generous, particularly as medical training has increasingly become enlightened, taken a more holistic approach, and included more social science and disability studies. They might also say that given their role, health professionals have no right to be simply a mirror of society and should be more enlightened. We will see whether the dominance of the individualistic, medical model in the health professions proves to be a cohort effect that changes as society and medical training changes and there is a new generation of doctors.

The evidence suggests that it will be more complicated than that. Others have argued that the dominance of the individualistic interpretation of disability is partly a result of those with an interest in doing things to and writing about disabled people (with the medical profession center stage), promulgating that view (Oliver 1990:62). After all, in answer to the question “Who benefits?” an individualistic model clearly suits the health profession, particularly the medical profession. It emphasizes the importance of their skill and assists in their professional dominance. The need to provide interventions that cure the individual or provide psychological and physical adjustment to disability is reinforced. Thus, it could be argued that health professionals are not just passive mirrors of society, taking an individualistic interpretation and accentuating it, but are also active promoters of a paradigm that strengthens their own role. That will make understanding disability in terms of social control and oppression much more difficult for individuals trained in that environment. Although medical training is becoming more community based and holistic, few courses are taking disability awareness seriously. To most physicians, the possibility that they are acting as agents of social control and oppression, however passively, is abhorrent and likely to produce an abreaction!

Why Does this Matter?

For disabled people, the training, attitudes, and behavior of health professionals toward them are all vital because of the important role health professions play in many disabled people’s lives (often with physicians dominant). These roles include providing health or social care, acting as a gatekeeper to treatment, influencing health policy and society, and training future professionals (see examples below, and see Altman 1981 and French 1994 for a description of the relationship between attitudes and behavior). Negative attitudes can lead to avoidance, anxiety, over protectiveness, pity, segregation, and alienation (Goddard and Jordan 1998). Discrimination toward disabled people has been documented in some of the professional literature (Biley 1994; Scullion 1999), although more formally recognized in nursing. This perhaps demonstrates a greater awareness and openness to the concept, rather than an absence of discrimination by the medical and other professions. Discrimination, negative attitudes, segregation, stigmatization, and poor service provision have been documented in many users’ accounts and reports (see Beard shaw 1988; Biley 1994; “Cabbage Syndrome” 1990; French 1994; Hadley and Gough 1997; Lindow and Morris 1995; National Health Service [NHS] Executive 1997; Sutherland 1981). Persistently emphasizing the dependency of disabled people in attitudes and interactions may encourage disabled people to accept dependency and adopt that role, making it more difficult to achieve independence (Altman 1981; French 1994). Discriminatory attitudes, or a simple lack of awareness of the lives disabled people lead and their quality, mean that the behavior of some professionals and the decisions they make may be questionable. Extreme examples of this are decisions made regarding the beginning and end of life.

To return to my personal journey, I was a junior physician with, as far as I knew, no significant impairment. My transformation into someone with a very significant impairment was sudden but also had a number of ironies beyond “my patient,” whom I introduced at the beginning of this chapter.

Nearly two years before my accident, a friend had a sporting accident that resulted in quadriplegia. I remember visiting him in the spinal unit, where I was later to become a patient. At the time, I was shocked to see someone in such a state. He was unable to move independently, and I had last seen him standing in a pub. I met him a few times later as his physical condition improved, and I remained utterly convinced this was a tragedy of the most profound kind. For some time, I found it difficult to move beyond that and to consider my friend as the same person, let alone understand anything more complex.

I describe this coincidence not to dwell on the irony itself, which is relatively common to people who acquire impairments during adult life as a product of chance and recall bias. I want to use it to illustrate my personal starting point, emotionally as well as conceptually. My reaction was the common one, so common others might describe it as “natural.” Although I was a physician, I was not informed by the perspective of disabled people. This persisted whether I was dealing with an anonymous patient as I described above or someone I knew much more personally, prior to impairment.

I have discussed how many physicians are not trained to understand the perspective of disabled people and make any good judgments about quality of life. This is compounded by the biased view most physicians have of disabled people because most contact is limited to when we are sick or suffering from the most severe health problems. I showed earlier how I was horrified by what I imagined to be the experience of disabled people, which I encountered in my practice. Now, 15 years after becoming disabled, I find myself completely at home with the concept, of effectively being me! At the time of the injury that caused my impairment, I remembered my girlfriend reminding me how important physical activity and sport were in my life and that “I’d rather be dead if I could not play sport.” She couldn’t understand why I was “taking it so well.” Of course, at the time of an acute injury, one has no choice, and you develop coping mechanisms. Now I know that my assessment of the potential quality of life of severely disabled people was clearly flawed.

Was I alone in being so profoundly and inappropriately pessimistic about life as a disabled person? The evidence would suggest not. In the United Kingdom, variance between disabled people and physicians was confirmed in a study of people with multiple sclerosis (Rothwell et al. 1997). The study revealed that physicians specializing in neurology were significantly more likely to believe that physical impairment was an important determinant of quality of life than were disabled people. Disabled people placed more weight on vitality, wellness, and mental health. Physicians also underestimated the quality of life of disabled people (suggested in an earlier study by Gardner et al. 1985). Similarly, in an earlier study in the United States, given a hypothetical situation, providers of emergency care imagined a strikingly more negative quality of life and outcome with quadriplegia than those actually reported by quadriplegics (Gerhart et al. 1994). For example, 92 percent of people with quadriplegia reported being glad to be alive, whereas only 18 percent of emergency care providers imagined they would be glad to be alive if they were quadriplegic. Eighty-six percent of people with quadriplegia reported their quality of life was average or above average, but only 17 percent of the providers imagined their quality of life would be average or above average. Similarly, the providers underestimated the actual self-esteem of people with quadriplegia and the extent to which they socialize and have sexual relations. When asked what interventions they would want if they were quadriplegic, 22 percent of providers would want nothing done to ensure their survival, and 23 percent would only want pain relief. The authors describe the sentiment they unearthed as a “better-off-dead” mentality. Importantly, those who imagined a poorer quality of life as a quadriplegic were significantly less likely to intervene actively. In a study of neonatal outcomes, a sample of adolescents and parents rated the health-related quality of life of disabled children higher than physicians and nurses working in neonatal tertiary centers (Saigal et al. 1999). The study used hypothetical cases, and some of the adolescents had been extremely low birth weight infants.

Discrimination and the relative ignorance of the quality of life raise fundamental questions when physicians are involved in decisions about access to health care. These could include appropriate aids or adaptations, whether to keep a disabled infant alive, “do not resuscitate” measures on disabled children, whether to operate on a child with Down syndrome, health policy and allocating resources, and the debate over assisted suicide.

Decisions about health services affecting disabled people are made at a number of levels. At the highest level, the values, structure, and functions of the health care system may enable or disable disabled people. This may be a function of the fundamental values being applied in the system. For example, in social care in the United Kingdom, a belief that empowering individuals is important has led to the institution of user-led direct payments for independent living—a substantial step forward for disabled people. In contrast, a dominance of a medical model and clinical effectiveness, defined only in medical terms, may have an adverse impact on disabled people. Other aspects of health care systems, such as capitation in a highly marketized system, can adversely affect disabled people (see De Jong and Basnett, this volume). Also, at a policy and health program level, decisions about resource allocation can adversely affect disabled people.

Decisions Made at a “Patient Level”

As I have discussed, the attitudes, actions, and decisions of the clinicians working within a health care system have an important impact on disabled people. My professional outlook, my personal interactions with other disabled people, and medical decisions were recently brought into conflict in a “beginning-of-life” decision, in which a friend was involved. My friend, who is 41 years old and has a severe impairment, was asked to support the parents of a baby with similar impairment. In a complex legal case, a fight ensued with a hospital whose blanket policy was that it is inappropriate to ventilate severely impaired children. In the court case, a clinical expert stated that the baby’s disability was “too terrible to lead a quality life,” and she would need “total bodily care for the rest of her life.” My friend leads a very full life, has been married, and is one of the leading advocates within the disability movement, frequently working with government ministers on legislation. She has had health problems; especially when as a baby, she needed ventilation on several occasions. Clearly, there was no guarantee this baby’s life would replicate that of my friend. However, this seemed to be a case of perspective. Clinicians see more disabled people when they are ill. There is a selection bias toward those needing most medical support and a lack of insight into the quality of lives of disabled people. The evidence given reflects a view that requiring personal support is a failure rather than an appropriate accommodation to facilitate independent living (Asch 1998). The hospital has since changed its policy and treats each case on its merits and in discussion with the parents. Similar cases have gone to the courts in the United States, including the Baby Doe case. In 1982, an infant with a tracheoesophageal fistula and esophageal atresia (a surgically remediable link between the esophagus and trachea and blockage of the esophagus) was allowed to die (Fost 1999; Pless 1983).

Decisions at the beginning of life about the degree of medical intervention appropriate for a neonate often have to be made quickly and still are frequently dominated by neonatologists (Raeside 1997), although they are becoming increasingly collaborative (Fost 1999)—some-times with the support of ethics committees. With the increasing survival of sickly and low-weight babies, these decisions are becoming more commonplace. However, what is not clear is the ethical framework and assumptions about the quality of life of disabled people that inform those decisions. While neonatologists have the expertise to make accurate neurological and physiological assessments, their views regarding the future quality of life and prognosis of infants may be biased by their own prejudice and experience and may differ considerably from parents and adolescents (Saigal et al. 1999). Of course, the vast majority of these decisions are made without great controversy, often with the advice of a neonatologist being accepted by other staff and parents (Raeside 1997), and increasingly neonatologists are receiving training in ethical issues. However, if the neonatologist’s view on life with a disability and the likely prognosis are biased by training and caseload (concentrating largely on sicker children and seeing them when they are sick), the validity of that judgment requires testing. The viewpoint described by Shearer (1992) that “a child with a disability is a tragedy not only to the child, but for [his or her] family” (p. 277) may indeed be prevalent. These issues are necessarily complicated by the fact that decisions made at the beginning of life cannot involve the neonate and therefore the potential disabled child and adult. When there is conflict, these cases are increasingly coming to the courts. In the United States, the regulations resulting from the Baby Doe case indicate that the prospect of “future disability” should play no role in treatment decisions. However, there is still room for considerable discretion in deciding when treatment is futile or inhumane, and in practice the debate has shifted away from conditions such as Down syndrome onto much sicker, much more severely impaired infants.

Similarly, decisions made when adult disabled people are ill or near to the end of life place valuation of the quality of disabled people’s lives in sharp relief. These may range from decisions about which interventions are made or maintained in an illness or increasing or maintaining interventions to maintain life, which is most commonly discussed with respect to ventilation. As with the majority of other clinical decisions, most are made by a clinician or clinicians, sometimes in reference to a wider team, varying in the extent to which the disabled person is involved.

The treatment that a disabled colleague endured in a U.K. hospital provides a striking example of how the medical profession is still getting these things wrong (this case was featured in a TV program, From the Edge [Bowler 1999]). My colleague, who is reasonably healthy and a wheelchair user, was admitted to hospital, unwell with a chest infection. With no more than a few words with her, no consultation with her partner, and no prior knowledge of her life, a junior doctor recorded in her notes that “in view of her poor quality of life and the underlying medical condition [spinal muscular atrophy, not the most severe type] she should not be considered for resuscitation.” Fortunately, my colleague, who is a lawyer and was vice chair of the local community trust (NHS provider of community health care), recovered, and she continues to lead a very full life. What appears to have happened here is what Asch (1998) describes as the substitution of an ill-informed social judgment about disability for a medical one. Whatever the medical arguments about performing cardiopulmonary resuscitation in this case, the premise on which it was taken, a poor quality of life because of disability was wrong.

The current debate on assisted suicide and disabled people in the United States is, in some ways, related to this, although theoretically driven by individuals’ choices. The proponents of assisted suicide believe that for many people, particularly those with terminal illness, offering the option of death is moral and humane. For some disabled people, the debate has largely been framed in terms that give cause for great concern (Asch 1998). For example, in the case of Elizabeth Bouvia, a young woman with cerebral palsy, the judge described her existence as “pitiable.” She had suffered a series of bereavements, including dismissal from college by a dean who thought she could not be a social worker because of her disability—together with the loss of educational opportunities and attendant care services. However, submissions supporting her assisted suicide focused on her physical circumstances and largely ignored whether other interventions, such as improved analgesia, attendant support, and reinstatement in a college, might improve her life. Similarly, David Rivl in, a man with quadriplegia, decided to end his life when he learned that a lack of funding for attendants meant that he would be unable to leave the nursing home. Recently and most notorious is the Thomas Youk case. Youk was a man with amyotrophic lateral sclerosis, killed by Dr. Jack Kevorkian, a crime for which Kevorkian was convicted of murder.

The underlying assumption for many of the proponents of assisted suicide for disabled people is that life as a disabled person is of a very poor quality, and therefore it is rational and logical for some disabled people to wish to terminate their lives. This has been challenged on a number of fronts. Gill (1992) points out that for nondisabled people, the desire to commit suicide is often considered irrational and a sign of mental illness. She contrasts this with several cases of assisted suicide in disabled people, in which the interventions offered are limited and the debate is framed in a totally different way.

In contrast, others have maintained that allowing disabled people the right to take their lives is a natural extension of their fight for rights. This idea has support among disabled people (Batavia 1997). For me, this ignores the social and financial context in which disabled people often find themselves and thus the extent to which this is a rational decision or one borne of desperation in a discriminatory society. In other words, health services assisting with killing the disabled person are the wrong intervention. In terms of formulating a policy, whether assisted suicide should be legal for disabled people should rest on the balance of benefit and harm. Notwithstanding the possibility of careful regulation, while one can envisage situations in which there might be benefit, in my view the potential harm to individuals and social attitudes outweighs that.

In the case of my colleague whose quality of life was described as poor, the judgment was simply wrong. In some cases of assisted suicide, disabled people are experiencing a very poor quality of life, but that is because of the absence of personal care and other support.

Allocation Decisions Made at a “Population Level”

Decisions made at a population or health care intervention are becoming increasingly important as health care systems grapple with the problem of perceived infinite demand and limited resources, and physicians are frequently involved in the process. Clearly, by its nature, much of this debate is not taking place at an individual level and does not directly relate to my personal “journey.” However, because of its importance and my relationship with a changing attitude toward disability, I will spend some time reflecting on it.

Tools are being developed, including the quality-adjusted life year (QALY) and the disability-adjusted life year (DALY), to compare the impact of diseases with the utility of different health care interventions. The QALY is a composite figure, combining the extra years of life and the extra quality of life obtained from health care interventions. Interventions can then be ranked in terms of cost per QALY. The DALY is also an amalgam of mortality and disability in assessing the overall “burden” of disease. Perfect health has a weight of 0, death has a weight of 1, and impairments have varying weights allocated. For example, angina has a weight of 0.223; quadri-plegia, 0.895. The utility assessments of health states in QALYs are usually determined using standard gamble or time trade-off techniques among largely healthy people (described in Nord et al. 1999). For DALYs, the weights were determined with professional health care providers using the person trade-off method (Üstün et al. 1999).

A number of criticisms have been made of QALYs, DALYs, and similar tools, not least their impact on disabled people. For example, Silvers (1995) points out that QALYs systematically value one year of a disabled person’s life less than somebody without a disability, conflicting with the beliefs underlying civil rights and civil rights legislation. Harris (1987, 1995) objects on grounds of “double jeopardy.” It is unfair that an individual who is already unfortunate is then less likely to receive treatment that may be life saving or may relieve his or her misfortune. Furthermore, even if accurate judgments about quality or length of life are made, does that equate with value? Singeret al. (1995) reject this argument on an number of fronts. QALY maximization is about the maximization of QALY gain and not, per se, based on an individual’s starting point; the absence of a rational base to make decisions if one rejects utilitarian comparisons; and the view that in ranking things such as suffering, an approach should be taken, influenced by the absence of future suffering rather than the present or past suffering. He also argues that decisions about resource allocation should be taken from behind a “Rawlsian veil of ignorance.” In other words, they should not be influenced by potential personal gain.

DALYs have been severely criticized too. Sayers and Fliedner (1997) argue that this single measure obscures more than it tells us. For example, it cannot account for economic, family, and social differences between communities, which equity requires us to consider. DALYs clearly suffer from being weights assigned by health professionals with all the shortfalls I described above. In a small study, Üstün et al. (1999) found some similarity in the way health professionals and disabled people from a range of countries ranked the disabling effect of a variety of health conditions. However, there were also systematic differences large enough to shed doubt on the universality of the rankings. Furthermore, ranking alone tells us nothing about absolute assessment effects, which may vary widely.

For my part, I can see at least three objections to QALYs, DALYs, and similar measures as they apply to disabled people. First, I address the principle that extra years of life or the quality of life of disabled people are worth less than the able-bodied. Like most current methods for assigning values to health states for preference weighting, including the Oregon experiment or other cost-effective measures, QALYs systematically equate reduced levels of functioning with a lower quality of life. This is wrong. There is no evidence of a broad consensus supporting a purely utilitarian approach. Indeed, even Singer et al. (1995) point out that evidence from Australia suggests that many believe other elements of justice, above and beyond the purely utilitarian, should be brought into play when deciding about the allocation of resources. Nord et al. (1999) quote more evidence of public preferences, suggesting that ability to benefit should be balanced by concerns about equity and severity of impairment. Given that we are operating in a society where there is already considerable discrimination and lack of understanding of the quality of life of disabled people, it is difficult to believe that a just solution will be produced. Second, as Harris (1995) points out, is there any reason why or consensus for equating a lower quality of life with a lower value? A third objection is that even if one accepted that some sort of utilitarian system of redistribution should contribute to decisions developed based on the ability to benefit, the basis for the formal tools and the views of many involved in making these decisions are substantially flawed with respect to disability. While the view that potential personal benefit should not influence decisions has some merit, these decisions also need to be informed by a proper understanding of the life disabled people lead and the potential for a high-quality life, given appropriate support.

The Oregon Health Plan, which was proposed in 1992, brought many of these arguments to the fore. The plan was regarded by many as a rational and inventive way of rationing health care. However, it was opposed by disabled people in the United States on the basis that it violated their civil rights. They sought support from the Americans with Disabilities Act (ADA) for this because it denied people with existing or potential disabilities equal health care (on the basis that they were less likely to benefit). Although debated (Hadorn 1992; Orentlicher 1994), initially these objections were accepted at the federal level. However, the Oregon plan was later approved after many of the structural features were removed (Silvers 1995).

The Oregon Health Plan is not unique internationally; health care systems in other countries, such as New Zealand and Australia, have developed mechanisms to make similar utilitarian judgments (Feek et al. 1999). For example, the New Zealand guidelines for chronic renal dialysis normally exclude anyone older than age 75 or with a serious disease or disability that is likely to affect their quality of life. Perhaps most important, health care systems throughout the world make judgments based on similar considerations but do so without making those judgments and choices explicit. With a few exceptions, this is the case in the NHS in the United Kingdom. From time to time, individual cases are highlighted or tested in the court where doctors are making decisions based on assumptions about the current or future quality of life of disabled people involved. The apparent restriction of heart surgery and transplants for children with Down syndrome is a case in point (Down Syndrome Association 1999; Phillips 1999; Rogers 1999).

An important tool for making judgments about health care interventions, at a program and an individual level, is clinical effectiveness or evidence-based medicine.1 This has assumed much greater importance over the past 10 years and affects clinical care, health policy, and research priorities. In principle, the concept is sound; numerous studies have documented the prevalence of treatment—at best ineffective, at worst harmful (Chalmers 1991; Sackett and Rosenberg 1995). Physicians had often provided treatments, believing they were effective, not realizing the influence of bias and random variation in their observations. This led to the expression, “Lies, dam lies and clinical impressions.” After all, why should health care systems pay for, or people be subjected to, ineffective treatments? This approach has gained great acceptance with an international collaboration established to produce systematic reviews of the evidence (Chalmers 1993). It has also become an increasingly important element of health policy, particularly in the United Kingdom (Department of Health [DOH] 1998; Sheldon and Chalmers 1994), with purchasers becoming increasingly fastidious in the approval of any intervention in which the evidence of clinical effectiveness is lacking.

As I say, in principle, I have no problem with this approach. If there is a choice, I would rather have treatments that have been shown to “work well.” However, there are difficulties. In this context, I am most concerned about the evidence on which judgments are based and who is making the judgments. The evidence is largely based on clinical trials in which the outcomes measured are often decided by physicians or other health care professionals, although some quality-of-life measures are being included. With breast cancer, for example, there is often evidence of the effect of treatment on relapse-free survival and survival. Less often is there evidence on quality of life, and rarely is there evidence of things that women have said are important, such as self-esteem, appearance, and sex life. Some of the supporters of clinical effectiveness recognize this deficit whereby the perspective of the user is not included in the sort of research question addressed or the outcome measures used (Chalmers 1998). To quote Chalmers, who discussed perinatal research, “Whose priorities are being addressed in the perinatal research agenda?” Not that of women, he argues, and he calls for more trials with women as collaborators, not as subjects (Chalmers 1991). Thus, particularly for disabled people, where the intervention is often not related to an acute life-threatening event but is longer term, the outcomes need to be subtler and include what users want from treatments. Hickey et al. (1996) developed this principle in the trial of treatment for HIV/AIDS. Until that happens, much of the evidence is incomplete and is dominated by physicians’ perspectives.

My Transformation, or Crossing the Divide

The accident that resulted in my disability led me to an intensive care unit, then to two spinal units where I experienced the spectrum of health care in all respects. Initially, I needed hightech, intensive medical intervention, followed by care in a friendly but ramshackle old fever hospital and then a newer spinal unit that had benefited considerably from charitable donations. My interactions with staff also ranged from the enabling to profoundly disabling.

Of course, my personal experiences may be informative but not necessarily generalizable. First, it is possible that my worst experiences were bad luck, although I observed those around me and some of the most oppressive elements were the result of a universal policy. Second, my recall is undoubtedly affected by the fact that I was going through my own “personal tragedy.” Third, as a physician, I was bound to be different, whether I wanted it or not. I talked the language and knew more about the implications of what was going on, and some of the staff, particularly physicians, felt more empathy with me than they might otherwise have done. Finally, other health care providers may have been doing much better, and indeed things may have improved over time.

Notwithstanding all this, my first exposure “on the receiving end” was an education. Initially, I spent six months in hospital, and the staff became used to me as another patient and stopped telling the new nurses that I was a physician. Petty, depersonalizing policies were often the most wearing. I remember rebelling against wearing my wristband with its name and number. After a few months, I knew everyone, and they knew me! However, although one could get away with removing the wristband, nurses could not issue medication without one reciting one’s hospital number! Some of the nurses were as frustrated as I was, but with hindsight, the policy is even more extraordinary than it seemed at the time.

Not surprisingly, given my background and the general mores of society, my view of disability was medical at the time, centered on my own recovery, or the lack of it. Like many physicians, I knew very little of what is experienced as a patient—the day-to-day interactions with porters, nurses, and physiotherapists. The interactions I did know about—those with physicians—were much rarer and were usually ritualized as part of ward rounds. This felt very different from the receiving end! Staff varied, of course. As my “patient career” progressed, I came into contact with more physicians whom I had known before my disability. Their reactions varied. Some were embarrassed; many did absolutely everything they could to help me through the system. Many of those I had known before my impairment shared and substantially reinforced my then view of what had happened as a personal tragedy. With others treating me, I observed paternalism and disempowerment of disabled people. My first serious experiences as a recipient of health care began to refashion my thinking about the health care professions and their approach. Despite now being relatively senior within my profession, I continue to experience health professionals who are much more comfortable if they are in control of me and my health care.

My experiences of physicians as people exercising substantial control over my options were entirely new and disturbing, often provoking in me personal anger. It made me understand the power physicians possess when patients seek our help and in other situations (see the previous discussion on end-of-life decisions).

Independent Living

While I was in the spinal unit, I met the social worker whose job was to facilitate my discharge. I was in my mid-20s and had lived away from parents for some years. It was obvious to me that I should continue to do the same. Unfortunately, it was more complicated than that. There were no immediate options for achieving the independence I sought. We looked at the costs of private staff for the hours of care I needed. The costs came to more than I could afford. The social worker proposed that I live with my parents who would “care” for me. When I rejected that, she presented me with a series of glossy brochures for residential homes, all set in the countryside and pictured bathed in sunshine—not for me. So, I returned home to my parents, who were supportive and loving as ever, although living with them was a different matter. My drive for living independently did not come from any exposure to disability groups or from the independent living movement. It came from having lived like that before and naively assuming that it should be straightforward to do it again. My shock, and then depression, at discovering the real world was an important step in my understanding disability. Until then, most of my other problems had been medical or eating and drinking when there was no staff to help. I had seen those problems as inevitable, given the combination of my impairment and the staffing of NHS hospitals. However, this was fundamental. I could not live where and with whom I chose and make decisions about when to get up and go to bed.

After my “release” from the cosseted world of the spinal unit, I slowly began to rediscover the world. As others have remarked about Vietnam veterans returning from the war, my expectations had been framed by my previous life without a disability. I was fortunate that I had qualified and worked prior to my disability. Together with farsighted and accommodating mentors, this eased my reentry into the workforce.

With the promise of work came the necessity to develop some sort of “independent living package.” Indeed, I did my utmost to link the two, because despite loving my parents, I did not want to live with them permanently. So, having secured a promise of employment away from home, I began to negotiate through a social worker to set up some kind of independent living package. After some false starts and a few leaps in the dark, I began to live independently and started to work. At the time, I was incredibly grateful for the social care package that was developed and run by a care manager. Although I met the staff before they started and theoretically had a power of veto, in practice, I had limited control over shift lengths, their roles, and who was employed. As a result, at times I was institutionalized in the community, organizing my life around the shifts of personal assistants (PAs).

After some years of struggling with an expensive package, which was largely controlled by social services, with encouragement and support from other disabled people, I transferred to a user-controlled scheme. Higher levels of satisfaction and quality and increased cost-effectiveness in user-controlled schemes have been found in a number of studies (Beatty et al. 1998; Doty, Kasper, and Litvak 1996; Oliver and Zarb 1993; Zarb and Nadesh 1994). For me, this was a revolutionary change. This scheme allowed me to employ and manage PAs myself. Initially, I had substantial concerns about managing the budget and hiring and managing staff. The flexibility and increased freedom changed my life. Once again, I had some choice over when I went to bed and when I went out in my van, and I had support during the day. I went from relying on nearly 30 percent agency staff to rarely requiring agency staff. Independent living gave me confidence, enabled me to participate more fully in society, and gave me a chance to influence local health and social care provision.

My achievement of independent living reflects my catching up late on a movement that had begun some years before, partly through centers for independent or integrated living (CILs) and led by disabled people (see Davis 1993; Hasler 1993; Oliver 1990). The disability movement had a profound effect on society and access. It is a way of living, but it also proved to be the genesis and hub around which disabled people have organized and expressed themselves as part of the disability rights movement. In the more rights-based culture of the United States, this was partly reflected in the adoption of antidiscrimination legislation much earlier than in many other developed countries.

Independent living has been linked to “other contemporary movements, such as civil rights, consumerism, self-help, demedicalization, and de-institutionalization” (De Jong 1983:5, quoted in Oliver 1990; Rodwin 1994). To what extent has this movement influenced the mainstream provision of health care and social support? As an individual, I became more involved, less excluded, more confident, and unwilling to accept the status quo. I had the practical support enabling me to participate. This reflects the disability movement more broadly, in which disabled people were less likely to be institutionalized, more confident, and better able to organize, and power is transferred from professionals. Thus, independent living became and remains a major potential change agent for health and social services for disabled people—partly through its direct effect on community care services, enabling disabled people to have more control over their lives (e.g., via direct payments), and partly as the movement itself emancipated disabled people, leading them to challenge health policy. This also forced health professionals to consider disabled people differently. At a minimum, some accepted disabled people were no longer dependent and simply in need of help. Others were even willing to accept disabled people as “experts” who could assess their own needs, help assessing the needs of others, and had control over decisions about their health care. Once disabled people were freed from residential care and with adequate personal assistance support, they had the means to organize and assert themselves as a group and to challenge discrimination.

However, although the disability movement and independent living movement have begun to exert its influence, there is still some way to go. Discussing disability policy in the United Kingdom, Priestly (1999) characterizes two approaches: The disability movement views disability as a form of discrimination or social oppression, whereas the bulk of disability policy emphasizes individualism, dependency, and otherness. Much health and community care policy and practice continue to reflect the individualistic, tragedy approach. Why? Well, I suspect for a number of reasons. First, attitudes of society as a whole are slow to change, and some health professionals reflect that, reinforced by medical approaches to their training. Second, there continues to be small numbers of disabled people in the health professions; disabled people continue to be disempowered. (ADAPT estimates 2 million disabled Americans are institutionalized against their will.) Third, because disabled people are disempowered by attitudes in society and financial, physical, employment, and other barriers, disability will feel like a “tragedy” for many disabled people at some stage. This may be especially true of older disabled people. Fourth, disabled people, or at least activists in the “disability movement,” have not seen health care issues as a priority until recently. Finally, some disabled people have reinforced the medical, individualistic approach, for example, via some impairment-specific organizations.

Self-Identification as Disabled

When I moved into the community, I began a journey that many disabled people would recognize. For a long time, I felt very uncomfortable in the presence of disabled people, particularly anyone with a learning disability or speech impairment. It was impossible not to “pathologize” disabled people, my medical training making guessing the impairment an irresistible mental game. I saw myself as essentially normal, although having a “problem” with my arms and legs.

Over time, a number of things happened. I began to mix more with disabled people as friends and colleagues. I became increasingly aware that the barriers I encountered in my life need not be there—they were the products of poor design, unwillingness to accommodate me, and soon, but they were what disabled me. I became unhappy with being described, either as an individual or in more general references to disabled people, as a tragedy or “the result of an awful accident,” being “in the state you’re in” or, alternatively, as extremely brave. I began to feel insulted. It no longer fit my self-image. Many disabled people will recognize this as a gradual growing in confidence as a disabled person and self-identification as disabled (Oliver and Barnes 1998:71-76).

This journey toward a clearer understanding of disability took some years. I also had the advantage of being someone who was living life as a disabled person. It may be that my prejudices and ignorance about disability were more profound than the average physician, but I doubt it. This underscores the difficulty that individual physicians face in understanding disabled people, given the values of the society we live in and the training most medical students undergo. However, the medical profession has profound responsibilities, not only as providers of health care but also as powerful decision makers in disabled people’s lives (e.g., the provision or withdrawal of treatment from disabled neonates and infants, the provision of equipment or services, and end-of-life decisions, including euthanasia).

As I became more involved in the “disability community” of local and national organizations of disabled people, I became involved with challenging, lobbying, and helping to form legislation on direct payments.

Perhaps the most important piece of legislation affecting disability in the United States is the Americans with Disabilities Act. It has had its most profound effects on physical access, transport, and, to a lesser extent, employment. Health care and personal care featured less prominently in the initial framing of the act, and it has not profoundly altered the nature of U.S. health care. However, it has had an impact. It was successfully cited in challenging the initial Oregon Health Plan and in the Baby Doe case. More recently, it has had an impact on long-term care. In the United States, judges have confirmed that states have a responsibility to provide long-term care in the most integrated setting, although this continues to be challenged.

In the United Kingdom, unsatisfactory antidiscrimination legislation came into force in 1996 and is being implemented in stages. This places certain duties on the health service with respect to access and the employment of disabled people but is unlikely to otherwise profoundly affect the delivery of health care. Currently, the government and disability advocates are debating the extent to which the latest antidiscrimination legislation will affect health and social care. The civil service is resisting allowing antidiscrimination to affect health and social care, fearing the implications (personal communication from a disabled member of the task force, who was set up to establish antidiscrimination legislation in disability together with the supporting structures, May 1999, although ultimately the task force made recommendations that include health and social care, and the Disability Rights Commission has included this in its three-year strategy). Whether you view this as a justified wariness of subjecting health and social care to further possible legal intervention or inappropriately defending discriminatory practice depends on your viewpoint.

In both the United States and the United Kingdom, it appears that antidiscrimination legislation is not going to produce whole-scale changes in health services. However, in some specific areas, there may be substantial change, for example, with respect to states providing long-term care in the “most integrated setting” in the United States. In the United States, there is an acceptance that it will require physicians and others making decisions about health care provision and rationing to ensure that the disabled are not unfairly discriminated (Hadorn 1992; Orentlicher 1994). In the United Kingdom, the impact remains to be seen.

In summary, it is possible to discern two intertwined influences on health and social care. The independent living movement has enabled more disabled people to live independently, influencing social attitudes. The same movement has encouraged campaigning for antidiscrimination legislation.

Conclusion

I have used my own experience of transforming from a junior physician with no significant impairment to someone with a very significant one as a tool to illustrate the limitations of health professionals in their dealings with disabled people. That transformation is by no means unique. Wainapel (1999) thoughtfully describes his move between the two cultures and illustrates how physicians are often negative about disability, seeing inability before ability and frustrated by the lack of a prospect of cure and ill-informed about simple accommodations. However, it is not common to become disabled and then become part of the disability movement, embracing the concept of disability as a product of the interface between people and the environment. The corollary of that is that it displaces the primacy of my years of training in medicine.

Using the example of my own experience, I have demonstrated how little I understood of disability as a junior doctor and how inappropriately negative my attitudes were. By supplementing this with vignettes and the published evidence, I have demonstrated that this was not limited to me. Some of the influences on health care professionals, including society as a whole, medical training that concentrates on disease and individuals, and the bias toward seeing disabled people only when they are sick, do not equip physicians well enough to contribute to the health care of individual disabled people. Nor does it help them to make decisions at other levels affecting disabled people. During my relatively short clinical career, I was undoubtedly ambivalent toward disabled people, with very little insight into the potential for a good quality of life. My training and subsequent experience tended to reinforce this. Given that disability in its broadest terms forms a large part of the day-to-day work of many health care physicians, this is a disturbing conclusion. There is evidence that the results of this are often inappropriate attitudes and care for disabled people. Of course, this should be moderated by the fact that despite training and negative influences in society, many physicians manage to provide an excellent service and have enlightened attitudes. There are also other examples of health care programs that offer some hope (Master et al. 1996; Silburn 1993).

However, at the level of the individual physician providing care, to ensure that the sort of substantial changes are made that I believe are necessary, a number of things need to happen. Much more emphasis should be placed in training in the broader influences of health and disability outside the health care systems. More emphasis should be placed on understanding the impact of attitudes and the environment on people with impairments and how that can be disabling. Finally, focus should turn toward empowering disabled people as patients in the relationship with physicians. There is some progress being made in some of these areas. For example, patient power is becoming an increasingly potent force within health care. However, the balance of power still remains firmly with health care professionals at all the levels in which they are involved with decision making. In the United Kingdom, the British Medical Association (BMA) is proposing that more responsibility lie with individual physicians in “end-of-life” decisions (BMA 1999) to the concern of some disabled people (Davis 1999). Providing some balance to the individualistic, medically dominated approach to training will be a major undertaking, although in the United Kingdom, the placing of more medical student training in primary care may help this.

Another way of making health and social care services more accessible and appropriate for disabled people is employing more disabled health care professionals. That alone is not a panacea, and to consider it so can be more damaging. Disabled health care professionals can of course perform their jobs poorly and behave inappropriately toward patients. However, given appropriate support and training, which need to be ongoing, disabled health care professionals have much to offer, but there is evidence that this is not being taken up, nor are the opportunities for training as broadly available to disabled people as they should be (French 1993).

In an effort to allocate resources most effectively and efficiently, health systems around the world are grappling with different tools, and physicians are influential in the debate. Ensuring that health services provide effective care is laudable, and evidence-based medicine has much to commend it. However, as I have demonstrated, the evidence base itself is currently flawed, lacking assessment of many outcomes that matter to disabled people. Some countries have adopted policies that seem, frankly, discriminatory (e.g., in New Zealand). Others have tried hard to develop policies for rationing that include a range of perspectives (e.g., the Oregon experiment), although still proving discriminatory in the first instance. The problem seems to be that most current methods for assigning values to health states for cost-effectiveness work systematically and equate lower functioning with a lower quality of life. This is wrong conceptually and ignores the interaction between a disabling society and environment, as well as the person with impairments. In addition, persons with less room to improve on most preference-based outcome measures are at a disadvantage compared with others who have a greater chance of improvement. This introduces a bias and puts people whose health can only improve a limited amount at a disadvantage in terms of QALYs gained.

Patrick describes four ways of dealing with that (D. Patrick, personal communication, 2000): First, do not undertake cost-effectiveness work. There is an argument for that with respect to disability, given the attitudes in society. Second, leave disabled people out of the system (unlikely to happen). Third, adopt Nord’s approach (Nord et al. 1999), positively weighting functioning in disabled people. Fourth, create a weighting system that permits disabled people to add their own evaluation. However, there are clearly difficulties in producing a tool that accurately reflects disabled people’s quality of life and their likely outcomes.

The independent living movement and antidiscrimination legislation in some countries have considerably advanced many disabled people. The effects of the independent living movement on health services have been twofold. Of itself, it has empowered disabled people to be more active consumers and commentators on health care policy. It has also meant that many more disabled people are living independently, rather than in institutions.

One of the central tenets of the independent living movement is that the disability people face is largely attributable to the effect of attitudes and the environment on people with impairments. This begs the following question: Do health services have any role in supporting disabled people? Clearly, disabled people disproportionately use health services. Open to question is whether enough attention is given to the broader determinants of disability. While health policy in the United Kingdom has yet to catch up with this, there is an increasing recognition that many of the broader determinants of public health lie outside health services.

Therefore, what is the role of medicine and rehabilitation? To take McKeown’s (1979) and Illich’s (1979) general reflections on the role of medicine, it is a chimera—at best achieving marginal improvements—and there is more to be gained by addressing broader problems within society.2 In my view, the “medical model” of disability is displaced from being the sole explanation of disability; that does not mean medicine and other health care and rehabilitation should not have a role in empowering disabled people.

To realize its potential though, people need to rethink the approach adopted by health services. This includes the balance between trying to change disabled people’s impairments and providing them with the tools to manage in a disabling society.

Some projects have integrated a “social model” approach, addressing the environment and aids as part of an integrated approach to independent living. Their work focuses on society as the problem, not the disabled person. However, they report having encountered opposition from members of the rehabilitation teams (Silburn 1993). Physician training also needs substantial rethinking, not simply the addition of a few disability awareness courses. Furthermore, clearly the experience of disabled people with health care cannot be disassociated from society as a whole.

Different cultures and systems of medical care have a different impact on disabled people’s experiences. For example, the greater rights-based U.S. culture provides everyone with access to the health care system, where ability to pay is an important determinant; as long as one has adequate insurance or cash, there is substantial individual autonomy (albeit moderated by the growth in managed care). In contrast, in much of Europe, there is a more collectivist approach, largely funded via central insurance or taxation, which aims for universal access but is more paternalistic in its approach.

In more general terms, disabled people’s experiences with health care are part of discrimination and the disabling effects of society. Oliver (1990) introduces the idea that adjustment, with respect to disability, should not be the individual coming to terms with her or his impairment but society adjusting to the changed requirements of an individual. There is an important corollary for the medical profession. Perhaps society and health professionals need “rehabilitation” more than disabled people do.