My background and interest in disabled people’s rights stems from the fact that I was born with an impairment that affects my mobility and dexterity. Like all of us, I have a number of characteristics and identities, but overwhelmingly my identity as a disabled person has defined my relationship with the world and its relationship with me. From the anxiety and terror that my family experienced shortly before my birth upon being told by doctors that I was disabled, to my own experience of being sent to “special” segregated schools, to growing up as different and experiencing the fear and loathing (forgive my frank description) directed towards disabled people, my status as a disabled person has defined, informed and ultimately motivated my life. I currently work in a large law firm as head of a department of education & disability law, a specialist practice that provides legal services to disabled people, children and students. I am also involved with a number of disability advocacy organisations, including Rights Now, a U.K. coalition of which I am Vice-Chairperson that campaigns for comprehensive and enforceable civil rights legislation for disabled people.
In my exploration of the subject of prejudice and the extent to which laws can overcome discrimination, I will begin by considering the nature of discrimination and the extent to which laws can deal with its subtleties. I will then look at discrimination as manifested within a legal system, using a case study from Great Britain. Finally, I will give some thought to new gene technology and disability discrimination.
The Nature of Discrimination: Examples of Marginalisation
Disabled people face explicit, implicit, visceral and systemic or institutional discrimination. Much has been written to illustrate this but it bears repeating; particularly because discrimination is rarely obvious, either because it forms part of the fabric of our institutions or because it is rooted in misconception and fear. By way of illustration, I would like to paraphrase from a seminal book: Pride Against Prejudice: Transforming Attitudes to Disability by Jenny Morris. Dr Morris quotes another disabled writer, Pam Evans, who lists the assumptions that she found non-disabled people in the UK have about the “real” lives and attitudes of disabled people. I imagine that at least some of them are true throughout the world. I emphasise that these are attitudes and assumptions and not truths:
“That we feel ugly, inadequate and ashamed of our disability.”
“That our lives are a burden to us, barely worth living.”
“That we crave to be ‘normal and whole’.”
“That whatever we choose to do or think, any work or pursuit that we undertake, is done so as ‘therapy’ with the sole intention of taking our mind off our condition.”
“That we are naïve and live sheltered lives.”
“That we can’t ever really accept our condition, and if we appear to be leading a full and contented life, or are simply cheerful, we are ‘just putting a good face on it’.”
“That we feel envy and resentment at the able-bodied.”
“That we feel our condition is an unjust punishment.”
“That any emotional distress that we show can only be due to our disability and not to the same things that hurt and upset them.”
“That our disability has affected us physiologically, making us bitter and neurotic.”
“That it is quite amazing if we laugh, are cheerful and pleasant and take pleasure in other people’s happiness.”
“That we are ashamed of our inabilities, our ‘abnormalities’ and loathe our wheelchairs, crutches or other aids.”
“That we never ‘give up hope’ of a cure.”
“That when we affirm that we cannot, or do not wish to do something, our judgement and preferences are overridden and contradicted as inferior to theirs.”
“That we are asexual or at best sexually inadequate.”
“That if we have a partner who is disabled, we choose each other for no other reasons, and not for any other qualities that we might possess. When we choose ‘our own kind’ in this way the able-bodied world feels relieved, until of course we wish to have children; then we are seen as irresponsible.”
“That we have not got a right to an able-bodied partner; and that if they happen to be very obviously ‘attractive’, it is even more of a ‘waste’.”
“That any able-bodied partner that we have is doing us a favour and that we bring nothing to the relationship.”
“That if we were particularly gifted, successful or attractive before the onset of disability, our fate is infinitely more tragic than if we were none of these things.”
“That our only true scale of merit and success is to judge ourselves of the standards of their world.”
“That we are sweet, deprived little souls who need to be compensated with treats, presents and praise.”
And so the list goes on. These assumptions are born not of actual interactions with disabled people, but rather of fears that have been engendered as a result of the systematic exclusion of disabled people from society.
This exclusion is illustrated in studies undertaken by a number of bodies in the U.K. that established, beyond doubt, that discrimination against disabled people permeates society. For example, during the 1997 British general election, the charity SCOPE found that 94% of the polling stations it surveyed were inaccessible to disabled people voting independently. In employment studies into hiring practices in the private sector, two fictitious applications differing only in one respect were sent out in response to publicly advertised jobs – one was from a disabled person and the other was not. The studies revealed virtually identical evidence: the “non-disabled” candidate was 11⁄2 times more likely to receive a positive reply, whilst the “disabled” candidate was six times more likely to receive a negative response. Meanwhile, MIND, the UK mental health charity, found that out of 778 people with past or present mental health impairments, 47% had been harassed or abused in public, 49% had been abused at home, 14% had been physically attacked, and 25% had been rejected by insurance or finance companies. Within the U.K. in the mid 1990s, the average income of disabled people under retirement age was estimated as being 72% of the average for all people within this age group, and disabled adults were twice as likely to be unemployed as non-disabled adults.
This exclusion is reflected in various aspects of our culture – film, television, literature, and the media. Colin Barnes identifies at least 11 stereotypes of disabled people, some of which are:
- The disabled person as pitiable and pathetic. E.g. Tiny Tim in Charles Dickens’ A Christmas Carol and Porgy in George Gershwin’s Porgy & Bess.
- The disabled person as an object of violence. E.g. Joan Crawford in Whatever Happened to Baby Jane?” and Audrey Hepburn in Wait until Dark.
- The disabled person as sinister and evil. E.g. Shakespeare’s Richard III, and also Black Dog, Blind Pew and Long John Silver in Stephenson’s Treasure Island.
- The disabled person as atmosphere or curio. E.g. the characters of Merrick in The Elephant Man and Half Soldier in The Good, the Bad, and the Ugly.
- The disabled person as supercripple. E.g. the central characters in My Left Foot and Reach for the Sky.
- The disabled person as an object of ridicule. E.g. the cartoon Mr Magoo and Harpo Marx of the Marx Brothers.
- The disabled person as his or her own worst and only enemy. E.g. the central characters in Coming Home and Born on the Fourth of July.
- The disabled person as a burden. E.g. in the recent British television drama Keeping Tom Nice.
- The disabled person as sexually abnormal. E.g. Hephaestus in Homer’s The Odyssey and Lady Chatterley’s husband in D.H. Lawrence’s novel.
In other words, the disabled person as incapable of participating fully in community life, which is reflected in virtually all art and literature!
What is particularly invidious is that these prejudices are internalised by disabled people as well. As a consequence, a necessary part of any remedy is to bring disabled people to the heart of society. Only then can disabled and non-disabled people really reconsider and re-evaluate the misinformation arising from the history of oppression of disabled people that blights everyone’s lives. For this reason, I contend that anti-discrimination laws are a necessary part of the ending of oppression -an enforceable mandate that will require the end of exclusion. The ending of exclusion is only the start, but nevertheless a critical one. Accordingly, I believe that without anti-discrimination laws, the process of re-evaluation, of transforming peoples’ hearts and minds, cannot begin. Anti-discrimination laws are therefore not the sole solution, but a necessary part of the fabric of transformation. Still, we must ask ourselves: what is the extent to which laws can end exclusion?
The Extent To Which Laws Can Redress Discrimination
It seems straightforward to me that laws can regulate personal behaviour, so I would like to focus instead on the presence of systemic or institutionalised discrimination. It may be useful to begin with an explanation of what this means.
In his study of disability discrimination in Britain, Colin Barnes looks at the nature of institutional discrimination. He argues that the phenomenon is evident when the policies and activities of all types of modern organisation result in inequality between disabled people and non-disabled people. It is, he states, “embedded in the excessive paternalism of contemporary welfare systems and is apparent when they are systematically ignoring or meeting inadequately the needs of disabled people”. It is also evident when these agencies regularly interfere in the lives of disabled people as a means of social control, in ways and/or to an extent not experienced by non-disabled people. Institutional discrimination incorporates the extreme forms of prejudice and intolerance usually associated with individual or direct discrimination, as well as those more covert and unconscious attitudes that contribute to and maintain indirect and/or passive discriminatory practices.
More recently, Barnes and Mike Oliver argue that even comprehensive and fully enforceable civil rights legislation will not, by itself, solve the problem of discrimination against disabled people. This is because discrimination against disabled people, like racism, sexism, homophobia, and other forms of institutional prejudices, is institutionalised in the very fabric of British (and no doubt any other) society. It encompasses direct, indirect and passive discrimination. It lies rooted in the very foundations of western culture. In the U.K., it is evident in our abortion laws, education systems, labour market, benefit systems, health and social support services, built environment – housing, transport and public buildings, leisure industry, media, and political system.
The critical question then, is given the entrenched nature of this form of discrimination, to what extent is it susceptible to legal remedy?
Barnes and Oliver argue that institutional discrimination will only end with the existence of both a strong anti-discrimination policy based on the social model of disability, and a well-funded disabled people’s movement to enforce it. They also argue for a meaningful freedom of information act to ensure that medical records and other information cannot be used to legitimate prejudice and ignorance. They state that what is needed is a comprehensive legislative programme, which will establish a suitable framework for the enforcement of policies that will ensure the integration of disabled people into the mainstream economic and social life of the community, and also provide public confirmation that discrimination against disabled people, for whatever reason, is no longer acceptable. In other words, we need legislation that emphasises civil rights rather than individual needs, and focuses on the shortcomings of the disabling society in which we live, and not on individual impairment.
Barnes and Oliver propose that civil rights cannot be achieved by legislation alone, but rather requires decisive political action, which itself is dependent on the presence of an adequately funded national network of organisations controlled and run by disabled people. It is these organisations that can place the issue of institutional discrimination onto the political agenda, and that are best suited to ensure the eventual eradication of disability discrimination.
In discussing how far laws can redress discrimination, it is of course useful to consider the experience of ten years of the Americans with Disabilities Act (ADA). Marca Bristow, Chairperson of the United States National Council on Disability, wrote to the U.S. President and summarised the enforcement of the law as follows:
while the administration has consistently asserted its strong support for the civil rights of the people with disabilities, the federal agencies charged with enforcement and policy development under ADA have, to varying degrees, been underfunded, overly cautious, reactive, and lacking any coherent and unifying national strategy. In addition, enforcement agencies have not consistently taken leadership roles in clarifying “frontier” or emergent issues. 
Amongst other things, the report recorded that disabled people found dealing with government agencies frustrating: they felt that they received little information with regard to their complaints, that their complaints took excessive amounts of time to process, and that their cases were not seen as “big enough”. Interestingly, the report concludes that “[s]ince the passage of ADA in 1990, the nation has made a respectable, though far from flawless, start toward eliminating discrimination on the basis of disability.”
From a global perspective, Tom Shakespeare and Nick Watson analyse the development of global disability politics and its effects on the planets estimated 450,000,000 disabled people. The authors quote James Charlton, who states that what makes the Disability Rights Movement subversive is paradoxically the extraordinary world wide oppression of disabled people: “[t]he oppression is systematic. The principles, demands and goals of the Disability Rights Movements cannot be accommodated by the present world system.” The implication is that the liberal ambition of civil rights is doomed by broader systems of power, and established capitalist social relations. As the global market becomes more and more dominant, the scope for national social investment and egalitarian reform becomes more limited. On the other hand, the authors argue for “realpolitik” – de facto advances and success in achieving equality will occur regardless of “official” positions – and I agree; disability politics “is a continuing project and will involve reversals as well as success.” 
Useful perspectives can also be gleaned from the experience of those who are engaged in fighting other forms of discrimination, such as sexism. The feminist advocate Sandra Fredman argues:
law must have a role in effecting change, if only because if it is not harnessed in support of progress, it frequently actively obstructs attempts to address patriarchy. But this is not the only reason: ultimately, it is a counsel of despair to conclude that law is intrinsically and unavoidably patriarchal. Instead, it can well be empowering. However, the programme of utilising law in support of change is a complex and risky one; and in the final analysis, it is only one element of a necessarily multi-faceted approach”.
With regards to the situation in Australia, Hauritz, Sampford and Blencowe remind us that laws can provide broad principles and institutional arrangements that further the rights of disabled people, establish criminal and civil sanctions to deter those who would deny the rights of disabled people, and can appropriate funds for either of these purposes. However, they state that, as often as not, laws cannot provide the whole of the answer, and moreover, are often part of the problem. Legal responses lack coherence, partly because of the range of government policies (economic, econo-social and political) that they reflect. For example, the option of civil litigation in common law countries responds to disabled people in two fundamentally different ways, depending on the source of impairment and the assignability of blame. First, there is the “total compensation model”, which seeks to restore the individual to his or her previous position, and second there is the “limited assistance model”, which provides inadequate or no provision for persons whose impairment arises from a birth defect, an illness, or any accident not caused by a solvent perpetrator. (There is in addition a third option in the civil rights approach.)
In their analysis of Australia’s Disability Discrimination Act 1992, Jones and Basser Marks discuss what they see as general limits on the use of law to promote rights. The authors report that lawyers have a tendency to believe that laws will provide solutions to complex social and political problems. In contrast to this, they assert the view that at best, law can achieve only part of the larger strategy required to achieve rights for disabled people. They argue that successful redress of the systemic and institutional biases that undermine substantial equality for all members of society requires more than adherence to law. In particular, they support the development of “Disability Standards and Action Plans,” which are designed to initiate and supplement the process of value formation through which attitudes and assumptions about disability become secondary to an idea of intrinsic human worth, independent of ability. Jones and Basser Marks assert that this foundational process of value formation cannot be achieved by law on its own, but they recognise that law no doubt has a role to play. For example, the Disability Discrimination Act 1992 actually implements the use of Disability Standards and Action Plans, and thereby takes seriously the “normative and educative function of law.” Furthermore, a law proclaiming the rights of disabled people conveys the message that they are valued members of a community, whose dignities are protected. It also conveys a message to perpetrators of discrimination, fear and hatred that their behaviour is unacceptable. Accordingly, they conclude that the law can play a significant role in empowering disabled people.
Finally, Colin Barnes concludes that:
[Cynics] might argue that institutional discrimination [against disabled people] is so entrenched within our [British] society that any serious thoughts of its eradication by whatever means are both utopian and unrealistic. Such people need to be reminded that contemporary society is neither utopia nor the real world, it is a socially created world. Institutional discrimination, in common with everything else in our world, is little more than a social creation, and as such can be socially eradicated. While the policies outlined above might not eradicate it overnight, they will certainly make a significant contribution to its demise.
I also hold the view that laws alone cannot redress discrimination but are a necessary step to doing so. However, in addition to comprehensive anti-discrimination legislation, we require some means of achieving the educational process and personal and social catharsis which will ultimately allow people’s worldviews to be reconfigured.
Discrimination Within the Legal System
Since I propose the use of law as an important tool for the redress of discrimination, it becomes all the more necessary to be conscious of, and guard against, discrimination as it operates within a legal system itself. By way of illustration, I will look at the extent to which the law of England and Wales – as written and as enforced – affords rights to disabled children not to be excluded from their communities and peer groups, focussing particularly on the right of disabled children to attend ordinary schools.
The law currently governing this area is set out in Section 316 of the Education Act 1996. This provides that where a parent wishes their (disabled) child to attend at an ordinary (i.e. not a special education school), that wish must be acceded to as long as:
- The needs of the disabled child can be met in an ordinary school;
- Other children would not be adversely affected by the presence of the disabled child in the school; and
- It would constitute an efficient use of resources for the disabled child to attend an ordinary school.
The British government has announced proposals to amend s. 316 to remove the first criterion but nevertheless, the remaining two substantive conditions will have to be met before a disabled child will be entitled to attend at an ordinary school. The first of these, concerning the absence of any adverse effect on other children, is particularly invidious as, so far as I am aware, there is no other category of children whose rights to remain within their community are dependent on whether anyone else would be allegedly adversely affected. Even more disturbing, however, is the fact that even when both hurdles are successfully met and the law supports inclusion, it does not always follow through to enforce a disabled child’s rights.
I would like to illustrate this by reference to a case study involving a disabled child and her attempts to progress through primary (ages 4-11) and secondary (ages 11-16+) education in mainstream schools. Within England and Wales, the law requires most disabled children to be provided with a legal document, known as a Statement of Special Educational Needs, that records the child’s needs, how these will be met, and the school that the child should attend. These Statements are prepared and maintained by the Local Education Authority (LEA) for the area in which the child lives. A key legal point for our purposes is that if a child has a Statement naming a particular maintained (i.e., state-funded) school, then pursuant to Section 324(5)(b) of the Education Act 1996, that school MUST admit the child.
Zahrah Manuel is a thirteen-year old with cerebral palsy. She is of small stature, uses a wheelchair, and communicates non-verbally. After a four year battle with her LEA, the London Borough of Camden, her mother, Preethi, succeeded in obtaining a place for her in an ordinary primary school within her area of Camden in North London. By all accounts, the placement was hugely successful for both Zahrah and the other children at the school. When Zahrah reached the age of 11, consideration ordinarily would have been given for her transfer from primary school to secondary school.
Camden LEA agreed that Zahrah should transfer to a mainstream secondary school. The nearest accessible mainstream school happened to be just over the borough boundary, in the area of a neighbouring LEA, the London Borough of Barnet. Nevertheless, Camden LEA accepted that, having regard to Section 316 of the Education Act 1996, Zahrah could attend a mainstream school, and agreed to amend Zahrah’s Statement to name the secondary school in neighbouring Barnet; that school was thereby legally required to admit her, as noted above. Equally importantly, Camden LEA agreed to fund the cost of two learning support assistants, as well an any additional therapy support and equipment needed at the school.
On 3 September 1999, Preethi took Zahrah to the secondary school named in her daughter’s Statement, but the school, in effect, refused to permit Zahrah to attend. Instead, it insisted that Preethi, Zahrah, Camden LEA, and many others familiar with Zahrah were all mistaken, and Zahrah should attend a special, segregated school for disabled children. Even more astonishing, the Barnet school was already designated as (and equipped to be) wheelchair accessible.
A six-month court battle ensued, eventually resulting in the school agreeing to admit Zahrah in March 2000. Throughout this battle, the law was clearly on Zahrah’s side: she had a Statement of Special Educational Needs that named an ordinary secondary school, and consequently the school was required to admit her. However, through a process of obfuscation, confusion and fear mongering, the school managed for six months to dissuade the British Secretary of State for Education & Employment, as well as two High Court Judges, from ordering the school to admit her, and they did so on a basis not more substantive than the claim that there is no smoke without fire: surely no school would object to a child attending unless they had good cause to do so. The school raised all manner of argument: that Zahrah would threaten hitherto harmonious relations within the school; that staff could not cope with Zahrah (despite the high level of additional resourcing agreed to and funded by Camden LEA); that there were no facilities for Zahrah to have a bath (even though no-one had suggested the need for such a thing); and so on. The consequence was that a marginalised child was effectively excluded for six months.
There is a postscript. In the midst of the battle for Zahrah to go to an ordinary secondary school, Preethi enquired of another local mainstream secondary school as to whether they would accept Zahrah. Although that school was not designated as accessible for disabled children, they readily agreed. Adaptations were made, and Zahrah commenced there in September 2000. The difference between the responses and attitudes of the two secondary schools is astonishing. Whereas the school in Barnet (supposedly designated for disabled children) eventually admitted her, they did so with extreme reluctance. Meanwhile the school in Camden, hitherto inaccessible, welcomed Zahrah with open arms, efficiently making whatever modifications were necessary to ensure that she is truly included.
In Disability and the Law, the authors quote Caroline Gooding, who contends that “the law is not an impartial arbitrator, but colludes with, and indeed itself perpetrates, discrimination”. The essence of this argument is based on the assertion that the law, in short, reflects the values and judgements of society, and if these are of themselves discriminatory, so will laws be. Furthermore, traditional legal systems frequently are based on a formal equality model, and consequently do not recognise or seek to redress structural inequalities. As Gooding states “this model cannot succeed in redressing inequality, and risks compounding the problem by legitimating inequality through its false account of equality.” In Zahrah’s case, the law was clearly on her side. And yet, its application failed her for six months.
New Gene Technology and Disability Discrimination
I now turn from an area that has traditionally concerned disability advocates to consider the relatively recent and rapidly developing areas of genetics, bioethics and biotechnology. Disabled people and disability organisations are growing increasingly fearful that the moral and ethical issues surrounding biotechnology and medicine are lagging behind scientific advances; history provides ample evidence of the risks involved in such a situation. Genetic counselling, pre-natal diagnosis, selective abortion, in-vitro fertilisation, embryo research, genetic engineering, gene therapy, voluntary euthanasia, “mercy killings” – these options are part of our lives and shape the societies in which we live, whether or not we understand them. Disabled children and adults have always been at risk of early death from either deliberate action or intentional inaction, such as the failure to be feed adequately. However, recent medical and scientific advances have “upped the ante” in this regard, and there are three main areas of contemporary concern for disabled people and their allies: pre-natal diagnosis and selective termination of pregnancy, withholding treatment and “mercy killing”, and genetic engineering.
Pre-natal screening refers to a variety of tests that pregnant women undergo to gain information about the foetus that they are carrying. These include blood tests, amniocentesis and ultrasound scans. Anti-natal screening is also done on embryos conceived “in-vitro” – outside the womb. Only those embryos considered free of “defects” are implanted. This screening out of “negative” characteristics has already been joined by the screening in of “positive” ones – a couple can choose to buy another couple’s embryos based on their “desirable” characteristics. The inescapable consequence of this is that disabled people, as a distinct group, are specifically targeted before they can even be born. Access to pre-natal diagnosis has for many years been driven by the goal of getting rid of certain groups of disabled people, for example, those with Downs Syndrome or Spina Bifida.
Selective abortion refers to choices about the termination of pregnancy made on the basis of the foetus possessing known or suspected characteristics that make it less desirable to its parents and to society in general. Such characteristics include race, sex, impairment, behaviour, and appearance. In the richer countries of the world, but increasingly in the poorer countries as well, there is enormous pressure on parents to undergo pre-natal screening, and to terminate a pregnancy where the foetus is possibly or probably affected by impairment.
Infanticide refers to the intentional killing of an infant shortly after birth. It is also often done because the newborn displays a particular characteristic – race, sex or impairment – that is seen as undesirable. The ethical justification of such killing is found in particular interpretations of terms such as “quality of life” and “personhood”. In particular, philosophers such as Peter Singer have expressed views that support infanticide, on the basis of decisions about quality of life and values. These developments threaten all of us: the disabled and the not-yet disabled.
Up to 100 different inherited conditions can be detected through screening. Within the U.K., the number of babies born with Spina Bifida has dropped by 75% in ten years – partly as a result of folic acid supplements but also because of screening and abortions. The number of babies born with Downs Syndrome has only dipped slightly – perhaps due to the fact that many women are having children later in life and this is a factor associated with Downs Syndrome. Many of those foetuses aborted after screening have no evidence of impairment. A few years ago, a report in the British Medical Journal claimed that while it cost up to £38,000 to screen for and “avoid a Downs Syndrome child” (through abortion), the lifetime healthcare costs for a person living with Downs Syndrome are £120,000 – clearly revealing the economic incentives behind screening and abortion.
Disabled people generally are not consulted in policy making on pre-birth diagnosis and counselling, even though we could provide valuable information to counterbalance the often depressing input of the medical profession. Many parents want more information about particular impairments before deciding whether or not to terminate their pregnancy. Even when those foetuses screened for an impairment are not aborted, disabled people’s rights to existence and development remain threatened throughout their lives. They and their families already face enormous pressure, both economic and social, as they struggle to get the support that they require. The very existence of these pressures inevitably is used to rationalise family decisions about pregnancy termination and the killing of disabled infants. I argue that selective abortion fundamentally devalues the lives of disabled people by assessing their lives as not worth living, and this devaluation in its turn further exacerbates medical and social pressure to avoid giving birth to disabled infants.
With regard to genetic testing, disabled people’s concerns are rooted in the fear that society may come to consider appearance, behaviour and health or impairment status as entirely dependent on genetics, so that the impact of social, economic and cultural factors is ignored. This attitude could lead to a reduction in benefits and equalisation of opportunities programmes, as well as an increased interest in eugenics. In addition, genetic testing may actually enhance fears that disabled people are “deviant”, thereby justifying the continuing disadvantage endured by disabled people.
Illness prevention may simply come to mean the routine selective abortion of foetuses with certain genetic markers, including those who have some risk of developing conditions such as Alzheimer’s, heart disease or cancer in later life. Sterilisation may be actively promoted as a “voluntary” sacrifice to be made by those whose characteristics are seen as undesirable and genetic in origin. Manipulation to remove “disease” may quickly become manipulation that defines “normal” variations in the population. Abortion and genetic manipulation may increasingly be used to guarantee what society regards as the most desirable height, colouring and sex. Apparently “made to order” embryos can already be bought in the U.S. – supposedly screened for “good” and “bad” characteristics.
In addition, people are already starting to suffer employment or insurance discrimination on the basis of a future predicted by genetic information as the practice of “genetic discrimination” spreads. Society may decide to withdraw resources from those with genetic disorders because these conditions – and the people who carry these conditions – are seen as preventable. Our whole view of what it means to be human and to be part of society – our value as individuals – may change because of extraordinary developments in this area.
All of this is frightening. Powerful eugenic assumptions about the kinds of lives that are worth living, linked with a utilitarian principle of benefit, appear to underpin much current human genetic research and clinical practice. A 1994/95 study by Dorothy Wertz and John Fletcher found that outside of Northern Europe, the vast majority of genetic counsellors hold overt eugenic views, and advise their patients on conception or pregnancy termination accordingly.
These issues are an archetypal reflection of what Jennifer Fitzgerald has called “the commodification of the self”, whereby we now value and commodify humans according to the value of their genes, so that persons with so called “bad” genes are defined out of humanity, and therefore potentially fall outside the boundaries of our collective moral responsibility. The “geneticisation” of the self compounds the oppression which disabled people currently experience in our society. Fitzgerald makes powerful comparisons between the illusory “earthly paradise” previously inhabited by Prince Siddhartha, who became the Buddha after seeing pain and suffering, and the modern western dream of beauty, control and perfection that forms the implicit basis for current developments in bioethics.
These are complex moral, ethical, legal, political, and medical issues. Most disabled people do not oppose medical research or genetic testing if it is part of ameliorative therapy or the treatment of illness or genetic conditions. What we oppose is eugenic cleansing carried out in the name of treatment. Recently, an eminent researcher was quoted as having said “soon it will be a sin for parents to have a child which carries the heavy burden of genetic disease.” Marshall Nirenberg, Nobel Laureate said, in 1967:
My guess is that cells will be programmed with synthetic messages within 25 years. . . . The point that deserves special emphasis is that man may be able to program his own cells long before he will be able to assess adequately the long- term consequences of such alterations, long before he will be able to formulate goals, and long before he can resolve the ethical and moral problems which will be raised. 
And as Irving K. Zola said in 1972:
medicine is becoming a major institution of social control, nudging aside, if not incorporating, the more traditional institutions of religion and law. It is becoming the new repository of truth, the place where absolute and often final judgements are made by supposedly neutral and objective experts. And these judgements are made, not in the name of virtue or legitimacy, but in the name of health.
We all are now living with the risks foreseen by these prescient scientists and authors, and new gene technologies can potentially determine every aspect of the lives of disabled people – from their very birth to their opportunities for health care and employment. We need laws drafted in consultation with disabled people. These laws should ban employers from using genetic information in any aspect of employment decision making, including but not limited to decisions about hiring and firing, promotions or demotions, pay rates, or any other employment rights or benefits. In addition, laws are required to ban life, disability and health insurers from using genetic information to deny insurance, increase insurance rates, or deny any insurance benefits. At a conference on bioethics held in Solihull, U.K., on12-13 February 2000, disabled people and activists in attendance agreed to a declaration that demanded:
- the prohibition of compulsory genetic testing;
- the provision of full, accessible and balanced information so as to enable informed personal decision-making;
- the right to assistance to live rather than assistance to die.
In essence, the declaration tries to contain the very real threat that genetic information poses to the ideal expressed in the insight of Dr. Oscar Arias, Nobel Peace Prize winner and ex-President of Costa Rica:
The most beautiful and enriching trait of human life is diversity – a diversity that can never be used to justify inequality. Repressing diversity will impoverish the human race. We must facilitate and strengthen diversity in order to reach a more equitable world for us all. For equality to exist, we must avoid standards that define what a normal human life should be or the normal way of achieving success and happiness. The only normal quality that can exist among human beings is life itself.
Paul Miller, a Commissioner with the US Equal Employment Opportunity Commission reports that “[t]he surge in genetic research and technology, fuelled in large part by the Human Genome Project (HGP), has resulted in the continuing expansion of the range of genetic tests and other genetic information available to physicians, insurance companies, employers, and the general public.” From the perspective of employment rights, Miller reports that if employers are permitted to base personal decisions on genetic information, an emerging and complex form of disability discrimination will develop. Miller reports that, as of August 1997, the U.S. Council for Responsible Genetics, a national bioethics advocacy organisation, had documented over 200 cases of genetic discrimination by insurance companies, employers and others against asymptomatic individuals with genetic pre-dispositions to certain diseases. These numbers are bound to increase as greater information and diagnostic techniques become available.
Partly as a response to these and similar concerns, President Clinton issued the Genetic Executive Order on 8 February 2000 to prohibit discrimination in Federal employment based on genetic information.  This order prohibits discrimination on the basis of protected genetic information in all aspects of civilian federal government employment, and limits federal departments and agencies’ access to, and use of, genetic information. As the President stated at the time “[b]y signing this executive order, my goal is to set an example and pose a challenge for every employer in America, because I believe no employer should ever review your genetic records along with your resume.” This constitutes a clear recognition at the highest political circles of the risks for genetic information and new gene technology to be misapplied.
But have we really come to terms with this “genie” and are the issues really that clear cut?
Tom Shakespeare and Nick Watson present a dialogue between two hypothetical characters, in order to rehearse some of the main arguments used against pre-natal screening and highlight some of the flaws that they see in these arguments. On the one hand, the opponent of pre-natal screening argues that selected termination: (i) is the same as eugenics; (ii) is discriminatory; (iii) takes advantage of the fact that women do not have free choice in a oppressive society and are pressured to consider disabled lives “unworthy”; (iv) is the thin end of the wedge (i.e., selected termination on the basis of impairment will result in termination choices made on the basis of increasingly superficial physical characteristics, such as hair colour, gender, etc.); (v) reduces diversity; and (vi) reduces choices for, and devalues, disabled people once they are born. On the other hand, the advocate of pre-natal screening argues that: (i) early 20th century eugenics policies are distinguishable because they were enforced by the state and involved coercion; (ii) it is hypocritical to voice support for a woman’s right to control her own body while opposing her choice to terminate a foetus with a disability simply because one does not agree with the decision; (iii) increasing choices for and information about disabled people, and working to end their present oppression, is a separate issue from pre-natal screening; (iv) there is a difference between seeking to prevent impairment and oppressing disabled people; (v) moral absolutes are not helpful; and (vi) it is illogical to extrapolate the argument that “born” disabled people would (or should) not exist from the mere fact of pre-natal testing.
Meanwhile, in another approach to the issues, Patrick Bateson, Provost of King’s College Cambridge, and Paul Martin, an author, warn us that the presence of genetic determinists like Charles Murray of Bell Curve infamy:
reminds us that the corpse of social Darwinism is still warm. … Those who are uncritically enthusiastic about the human genome project like to think of the genome as a blueprint. According to this view, if all the genetic information is fed into a sufficiently powerful computer equipped with the right software, the fully functioning adult will magically unfold before our eyes like a Japanese flower put into water. This view is deeply misguided. Genes make proteins, not people.
People, on the other hand, are created through a complex continuous process of exchange between individuals and their environments.
The issues are complex. Genetic discrimination is, in one sense, no different than any other kind of discrimination. But I have wanted to conclude with an examination of this area because, if for no other reason, it emphasises that a society which marginalises disabled people will discriminate against them anew, as new structures forums for discrimination evolve. One necessary approach is to combat the discrimination with laws, but fundamental change in society remains necessary.
I hope that I have illustrated three things – that discrimination against disabled people remains entrenched and widespread, that the law is a necessary and valuable component in combating discrimination, and that law itself will not succeed without a wider re-evaluation of our understanding of disability in society. I am optimistic. It is, I believe, not in our inherent nature to discriminate or oppress. Oppression arises through attitudes based on and cultivated by existing social structures and organisations, and these can be changed. Each of us has a part to play – individually and collectively – in achieving this change.
* Head of Education & Disability Law, Levenes Solicitors, U.K.
 In my discussion of these topics, I will generally assume that the reader is familiar with the social model of disability and its implications for identifying and responding to disability discrimination.
 19-22 (London: Women’s Press, 1991).
 See Disabling Imagery and the Media: An Exploration of the Principles for Media Representations of Disabled People (Ryburn Pub. and British Council of Organisations of Disabled People, 1992).
 Disabled People in Britain and Discrimination: A Case for Anti-Discrimination Legislation (London: C. Hurst & Co; Calgary, Alberta: University of Calgary Press in Association with the British Council of Organisations of Disabled People, 1991), as discussed in Colin Barnes, Institutional Discrimination Against Disabled People and the Campaign for Anti-discrimination Legislation, 12 Critical Soc. Pol’y. 34 (1992).
 Barnes Institutional Discrimination Against Disabled People, id. at 3.
 “Disability Rights – Rhetoric and Reality in the U.K.” in 10 Disability and Society 111 (1995).
 Letter of Transmittal of 27 June 2000, accompanying a report of the National Council on Disability, Promises to Keep: A Decade of Federal Enforcement of the Americans with Disabilities Act (Washington, D.C.: U.S. Government Printing Office, 2000) [Also available online at: http://www.ncd.gov/newsroom/publications/promises_1.html]
 Id. at 385-88.
 Id. at 392.
 “Making the Difference: Disability, Politics, Recognition in The Handbook of Disability Studies 546 (Gary L. Albrecht et al. eds., Thousand Oaks, CA: Sage Pub., 2001).
 Nothing About Us Without Us: Disability, Oppression and Empowerment 149 (Berkeley: University of California Press, 1998).
 Shakespeare & Watson, supra note 10.
 Women and the Law 367-68 (Oxford: Clarendon; New York: Oxford University Press, 1997).
 “Introduction” in Justice for People with Disabilities i, xv (Marge Hauritz, Charles Sampford & Sophie Blencowe eds., Sydney: Federation Press, 1998).
 See discussion id., at xvii.
 M. Jones & L.A. Basser Marks, “The Limitations on the Use of Law to Promote Rights: An Assessment of the Disability Discrimination Act 1992 (Cth)” in Justice for People with Disabilities, supra note 14, at 60-84.
 Id. at 78.
 Barnes Institutional Discrimination Against Disabled People, supra note 4, at 109.
 1996, ch. 56 (Eng.).
 R. v. The Governors of Whitefield School ex parte Manuel, No. CO/4510/1999 (Crown Office, High Court, Royal Courts of Justice); settled.
 Gooding, Disabling Laws, Enabling Acts xvii (London: Pluto Press, 1994) as quoted in Jeremy Cooper & Stuart Vernon, Disability and the Law 10 (London; Bristol; Pa: Jessica Kingsley Pub., 1996).
 Gooding, id. at 32 [as quoted in Cooper & Stuart, id. at 21].
 N.J. Wald et al., “Antenatal Maternal Serum Screening for Downs’s Syndrome: Results of a
Demonstration Project”, 305 Brit. Med. J. 391 (1992).
 D.C. Wertz & J.C. Fletcher, “Ethical and Social Issues in Prenatal Sex Selection: A Survey of Geneticists in 37 Nations”, 46 Social Science and Medicine 255 (1998).
 Paper delivered at Rehabilitation International Conference in Auckland, New Zealand attended by author (1996).
 Bob Edwards, Embryologist and In-vitro Fertilisation Specialist, as reported in Sunday Times of England, 4 July 1999.
 As quoted in Disabled People Speak on the New Genetics [Disabled Peoples’ International (DPI) Europe Position Statement on Bioethics and Human Rights], available online at: http://www.dpieurope.org/htm/bioethics/dpsngfullreport.htm
 “Medicine as an Institution of Social Control”, 20 Sociological Review 487, 487 (1972).
 Conference sponsored by DPI entitled Disabled People, Bioethics and Human Rights; the declaration that emerged from the conference is available on the DPI Europe website: http://www.dpieurope.org/htm/bioethics/biodeclaration.htm
 “Introduction” 3, 3 in From Exclusion to Inclusion: A Report of the Disability Rights Task Force on Civil Rights for Disabled People (London: Department for Education and Employment, 1999); the report is available online at http://www.disability.gov.uk.drtf/index2.html
 Paul Steven Miller, “Is there a Pink Slip in my Genes? Genetic Discrimination in the Workplace,” 3 J. of Health Care L. & Pol’y 225, at 226 (2000).
 Executive Order 13, 145, 65 Federal Register 6877 (10 February 2000).
 Bill Clinton, Speech to the American Association for the Advancement of Science (8 February 2000), in Extracts from the Office of the Press Secretary, The White House, March 2000. Available online at: http://clinton6.nara.gov/2000-02-08-remarks-of-president-on-genetic-discrimination.html
 Supra note 12.
 “Recipe for Humans: For All Our Genetic Triumphs, We Still Don’t Understand Individuals say Patrick Bateson and Paul Martin”, The Guardian (U.K.), 6 September 2000.