ARE DISABLED PEOPLE HUMAN?
Contribution to discussion on the nature of human nature How humans have evolved as a species is still a mystery, although there are many theories. What we do know is that we have bigger brains than animals and share much of our DNA. And we have evolved into homo sapiens – a species with physical bodies, brains and spirit and abilities for social organisation, development, empathy and love.
One of our characteristics is the ability to discriminate and to make value judgements. We do it first as newly born babies, when we quickly learn to discriminate who is our mother on whom we depend for nurture and survival. We do it later with our wider communities when we ascertain who we want to have as friends. Whether we make these choices for reasons of survival or to verify our own self-worth is debatable. There is no doubt, however, that we discriminate and make value judgements about other humans all the time. Some judgements are positive, some negative. We discriminate in our actions – separating ourselves from others – or we do it verbally. Whatever the root causes of our negative or positive discrimination we justify ourselves through formulating myths and stereotypes about the objects of our discrimination. We make people into icons, celebrities, heroes and heroines. We also denigrate others, both individually and as a group by defining them and treating them as less than human.
Since the beginning of time disabled people have been seen as different from other human beings. Legislative and social responses to disabled people’s needs and rights have separated or isolated them from their communities. In some places and centuries disabled people have been seen as quasi-gods, in others disability has been seen – and is still seen – as the embodiment of sin. Disabled children have been left to die on Spartan hillsides or at the gates of cities and temples.1 Disabled people were first in the terrible line of men, women, and children lead into the Nazi gas chambers.2 Disabled people have been isolated in institutions, at the back of huts or in inaccessible environments – even isolated in their own homes. Religious and moral teachings say that the sin that disabled people embody can be the instrument through which non-disabled people can achieve greater humanity or sanctity. Rehabilitation and community services have established a professional and well-paid hierarchy that has not equalised disabled people’s opportunities and they have built ever stronger, separate and de-humanising environments. Legal systems and statutes throughout the world have specifically denied justice to disabled people, saying, among other things, that it is all right to kill a disabled child or adult, though it is considered immoral – and illegal - to kill a non-disabled person. Recently in the UK alone judges have sanctioned the termination of life of two disabled children and have allowed a mother who killed her two disabled sons aged 23 and 20, a man who killed his mentally ill wife and a father who killed his happy, playful son to go free from court with non-custodial sentences. These stories are just the tip of the iceberg.
There now exists an international database of violations of disabled people’s rights that has cases affecting over 2 million disabled people. 10% of those violations have resulted in death and 35% of degrading and inhuman treatment.3
Scientific genetic advances pose a further threat to disabled people’s humanity as genetic ‘faults’ are seen in terms of potentially disabling impairments and the eradication of these ‘faulty’ genes seen as the only solution for the advancement of the human race – for the good life and the pursuit of happiness. If we discriminate over foetus/embryos then we are seeing them as potential humans and therefore we need to consider them as humans, whether they are legally or not. The problem is that we see Impairment and disability are seen as the same thing. Yet, in reality, everyone has impairments, either physical or behavioural or both. And we see those impairments as only part of our humanity not the whole of our personhood. Disability is the social response to our impairments – the responses of attitudinal and systemic discrimination, prejudice, stigma and fear.4 Disability can only be eradicated through social change and justice and equality for those who are deemed different or deviant because of their impairments, not by fixing impairments.
This subordinate status of disabled people and other groups of humans and an understanding of their shared inequality and injustice can be measured – and hopefully, redressed – by the universal human rights instruments. Society has recognised this in relation to women, ethnic minorities and children, but it is only now that disabled people are being seen as having the same inalienable right to be considered human. As Leandro Despouy, the UN Special Rapporteur on Disability says in the introduction of his report to the United Nations in 1993:
“The treatment given to disabled persons defines the innermost characteristics of a society and highlights the cultural values that sustain it. It might appear elementary to point out that persons with disabilities are human beings – as human as, and usually even more human than, the rest.”5
The elaboration of the UN Convention on the Rights of Persons with Disabilities, and signature by 120 member states on March 30 2007 provides a potent message in the humanity of disabled people.
Survival of the fittest
Is this separation of disabled people from the rest of humanity a part of social survival and a natural evolutionary mechanism? Is invalidation and discrimination of others an identifying characteristic of a human being – that is, does deploring difference make you a fully paid up member of the human race? Or is this separation of disabled people based on a genuine desire to end human suffering, to pursue perfection, to do no harm?
Certainly we want to continue our species, our tribe, our nations. Undoubtedly this survival instinct has ensured that group dynamics have flourished through specific cultural and behavioural guidelines to ensure recognition of what constitutes good breeding/survival characteristics.
Unlike ladybirds, human beings do not use the number of their spots to assess good characteristics; we use fashion, lifestyle, and status. We create myths, stereotypes, and customs for rejection of the unacceptable and for social elevation of those we see as outstanding. In order to ensure social conformity to these survival guidelines we introduce behaviour guidance – or laws - mechanisms for rejecting or excluding any individual or group which is seen to threaten that survival: immigration laws, apartheid regimes, anti-social behaviour orders. Inevitably these behavioural guidelines are set by those who consider themselves the dominant survivor group and are in control of the social organisation, even the channels of democracy.6
Pursuit of happiness
Today’s society is deeply wedded to the pursuit of happiness, where pain and suffering are seen as abnormal and traumatic and the sufferer is a ‘victim’, ‘vulnerable’, in need of relief and counselling. A good quality of life is assessed by the absence of disability and both the health and economic status of nations are quantified by disability adjusted life years7, instead of the old measurements of infant mortality and life expectancy arising from poor maternity care, bad working conditions and diet. Following the example of Holland, several countries or states are pursuing or have introduced legislation to allow voluntary euthanasia or assisted suicide. It is hard to assess whether this is being done to cut the costs of palliative care in spiralling health budgets or to respond to the fears of those who have seen their loved one’s die in unacceptable conditions due to the absence of proper palliative care. What is clear is that people no longer see pain, suffering and death as part of the normal human process, events from which they can develop a greater understanding of life and their own personhood, but events which they want to control and then have the power to reject.
When analysing why disabled people are seen as non-human, we cannot avoid the classic debate of a human being’s intrinsic worth as opposed to instrumental moral value. Should life be valued in itself and protected under a set of moral codes or is it only valued in relation to others? Undoubtedly there are many who believe that life is only of positive value in relation to a quality of life that they themselves think necessary for a ‘good life’ and in relation to others who share those values.
Sagarin8 was one of the first social scientists to argue that negative, invalidating judgements that prevailed with regard to racial and ethnic minorities were also applicable to similarly disadvantaged and stigmatised non-ethnic groups such as women, children, the aged, homosexuals, alcoholics, disabled people etc. Traditionally, these non-ethnic groups have been analysed by social scientists as ‘deviant’ and anti-social. This medical model located the deviance in the individual’s pathology and assumed that the identifiable impairments, abnormalities, or disorders in the individual were the determining cause of deviance. This traditional view has been vehemently contradicted since the 1960s,9 as deviance has been analysed within a social construct. It is now recognised, both by the groups concerned and the wider public, that the negative stereotype of deviance has further discriminated and invalidated these groups from the dominant group.
Whilst the social construct and negative stereotyping have been readily accepted and understood in relation to most ‘deviant’ groups (women and ethnic minorities in particular), disabled people have continuously, despite substantial evidence to the contrary10, been viewed in relation to the medical model. As was outlined in the introduction, this has been a major factor in the dehumanising of disabled people and led to geneticists and bioethicists concentration on disabling impairment as deviance.
Francis Galton’s theory of eugenics was to better the human stock of the nation. He wanted to improve good genes, rather than eliminate bad ones, but the elimination of deviance, depravity, destitution, vagrancy and criminality was widely supported by the leading thinkers who were members of eugenic societies in Europe and North America. They saw this elimination, as well as the promotion of health and wellbeing, as a moral and economic imperative for their countries. This support of eugenics led to the compulsory sterilisation of ‘degenerates’, who were mostly disabled people, in the UK, US and Scandinavia and the Third Reich.
To achieve ‘goodness in birth’ (the Greek translation of eugenics) and to relieve pain and suffering is the laudable aim of most geneticists and bioethicists. It is certainly the objective of gene therapy. But it does appear that the baby is going out with the bath water – literally. The impaired gene/chromosome/embryo/foetus is not seen as part of a potential human being, but as a flawed structure to be changed or eradicated and so surrounded by negative prejudice that to eliminate it seems to be the morally valid and the best response for the individual, the family and society as a whole.
Is impairment/difference a bad thing? Is a non-sentient human being no longer a human being? Or is someone who looks different, operates differently, who needs a different environment, intrinsically bad? How can we assess quality of life? Is one person’s heaven another person’s hell? What is perfection in a human – is it just physical and intellectual abilities and wealth or is it moral worth? When we know that the greatest number of suicides is among those with high IQs11 it becomes clear that intelligence does not always go hand in hand with happiness.
Who could assess the quality of life of David Glass, a 14 year old boy with hydrocephalus? The doctors made no attempts to help him live until 50 minutes after his birth, when he began to cry. Then twelve years later, when hospitalised with a chest infection, the doctors tried to ensure ‘a death with dignity’ by injecting him with diamorphine. But as his mother says: “David gives me love and honesty. When he smiles, I know it’s not because he wants a bag of sweets, it’s because he loves me. He doesn’t have an evil thought. He isn’t driven by power or money. He is just a genuine, nice kid.”12 Luckily, his family fought – literally – to keep him alive and for the drip to be withdrawn. For the four years since that incident he has played his role within a loving family. David is making as good a contribution to life as any other son or daughter – it just happens to be different.
The level or degree of impairment is also seen as a reason for elimination – though not for cure. Again, what constitutes severity is assessed by prejudicial notions of what constitutes pain and suffering or a poor quality of life. UK abortion laws, for instance, allow for abortion of a viable foetus, if ‘there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped’.13. On 16th March 2005, the Crown Prosecution Service concluded that they would not bring a prosecution against two doctors who undertook an abortion on a 28 week unborn baby with cleft palate,14 despite a cleft palate being non-life threatening and remedial.
Certainly arguments could be made that society cannot economically afford to keep such people alive – and China felt that so strongly about girl babies that they limited families to one child within a culture of preference for a male child. That policy dangerously affected the gender balance and, coincidentally, did nothing for the economy. China found, as had most of those engaged in social development, that to improve the economies of any nation it is imperative that women are supported and maintained in their equal and, quite often, dominant, role in community and family activity.15 And as the past President of the World Bank, John Wolfensohn said: "Unless disabled people are brought into the development mainstream, it will be impossible to cut poverty in half by 2015 … goals agreed to by more than 180 world leaders at the UN Millennium Summit in September 2000".
If we say that disabled children should not be allowed to live because of their cost to the health service, then are we going to say that any one who is badly wounded in a war should be allowed to die? What of those people who are severely hurt in a train crash or road accident? If cost becomes a factor in the selection of who is a fully contributing human being then rights and democracy fly out the window and biotechnology becomes a form of social control.
In today’s rights based world, nobody would publicly say that to be different in relation to gender or ethnicity was a bad thing. But it is an accepted belief that to be disabled is bad and disabled people should be relieved of their suffering and this ‘doing good’ - gives humanitarian gold stars to those who, in effect, seek elimination. The positive attributes of disability seem to be too much for many people to believe or understand.
Public statements regarding the badness of disability, however outraged disabled people may be by them, are common. In contrast, Christopher Newell, a leading disability activist in Australia said at an exhibition on the Genetic Revolution:
“It is one thing to have treatment for a medical condition, but another when genetic makeup is such a compelling tragedy as to remove the claim to life itself. And in screening out disability, are we also screening out quintessential human qualities such as courage, persistence and fortitude? Are we valuing technology above the inherent dignity of human life? Could biotechnology ultimately signal the end of genetic diversity?”16
Both Newell and Despouy, quoted at the beginning, are saying the same thing: genetic diversity is necessary for creating a vibrant and sustainable society, and disabled people, regardless of the level of their impairment, have essential gifts to bring to human life. To be human is to be different and difference is not a question of degree or kind.
As disabled people throughout Europe have said in their statement about Bioethics:
“Many disabled people are only alive today because of scientific progress generally and new medical techniques in particular, so of course we wish to promote and sustain such advances where these lead to benefits for everyone. But we want to see research directed at improving the quality of our lives, not denying us the opportunity to live.”
1 Fletcher, A. (1995) Obstacles to Overcoming the Integration of Disabled People, London, DAA.
2 Gallagher,H.(1995) By Trust Betrayed: Patients, physicians and the licence to kill in the Third Reich, New York, Vandamere Press
3 Light, R. (2004) A Short Report of the DAA Violations Database, London, DAA.
4 Barnes.C, (1991) Disabled People in Britain and Discrimination: A Case for Anti-Discrimination Legislation, London, Hurst.
5 Despouy, L. (1993) Human Rights and Disabled Persons, UN, New York.
6 Kallen, E. (2004) Social Inequality and Social Injustice: A Human Rights Perspective, Basingstoke and New York, Macmillan Palgrave.
7 Metts, R.L. (2001) The Fatal Flaw in the Disability Adjusted Life Year, Disability & Society,Vol 16, No. 3, Hampshire, Taylor & Francis
8 Sagarin, E. (ed.) (1971) The Other Minorities: Nonethnic Collectivities Conceptualised as Minority Groups. Toronto, Ginn & Co.
9 Becker, H.S. (1963) The Outsiders: Studies in the Sociology of Deviance, New York, Free Press.
10 Oliver, M. (1990) The Politics of Disablement, Basingstoke, MacMillan.
11 Persaud, R. (2006) Does Smart mean Happier?, Better Humans, the politics of human enhancement and life extension. London, Demos.
12 Angela Levin, Why must my Son be left to Die? Daily Mail, August 3, 2000, UK
13 United Kingdon Abortion Law, 1967, as amended.
14 Joanna Jepson case. www.daa.org.uk/e_tribune/e_2002_12 and 2003.01.htm
15 Final resolution, (1995) UN World Summit on Social Development, Copenhagen, UN.
16Head, M. (Jan, 21 2006) Thanks but I’d Rather be Disabled, Listener – the Things that Matter, pp. 48-9, www.listener.co.nz.