ARE EQUALITY RIGHTS ARGUMENTS ESSENTIAL WITHIN THE DEBATE OF BIOETHIC ISSUES?
The concept of equality rights is an important argument for oppressed marginalised groups. The members of the population with a marginalised characteristic fight all over the world for being included in society, for equal opportunities, for Anti-discrimination and self- determination/autonomy using equality rights arguments. For the characteristic disability this means a war at least two fronts. One is the equal participation in societies which means the same access to education, buildings, services, employment, health care, equal access to life and death and equal rights in front of the law. But the fight on the second front is equally as important. That fight is about self esteem, self worth, pride, acceptance for which they are, dignity and self-determination/autonomy.
Let's give you first a few highlights from the "equal participation in society" front;
Access to buildings and transportation:
Transportation a given for many in society still is mostly refused to the characteristic disability. In the developed world, one in three disabled people cannot use public transportation (1). No Country has a fully accessible transportation system (1). Access to buildings is still a dream in many countries. Even a fairly young country like Canada has big problems in making buildings accessible to disabled people. Only a few countries legislate for accessible public facilities and the available legislation mostly lacks any enforcement power (1).
Education, the basic tool for any individual's empowerment, is being denied to most disabled children. In Canada 41% of disabled people have primary education only (1). In the UK only 0.03% of the university population is disabled (1). India, 97-98% of disabled male children receive no education (1).
UK and USA, 67% of disabled people aged 15-64 are unemployed. Similar numbers are available for most western countries (1). The employment rate for disabled people is dropping. The federal government of Canada has now less disabled people (as % of workforce) than they had 10 years ago. The % of every other marginalised group went up (2,Calgary Herald).
Disabled people are grossly over-represented among poor people. In Britain, Canada and the USA, over 60% of disabled people live below the poverty line (1)
Health care does not exist for most disabled people. It has been estimated that existing services are reaching no more than 2% of those in need in developing countries (1).
Disabled people e.g. Down Syndrome people are routinely excluded from organ recipient lists in the developed world including Canada.
Violence and abuse:
It is a major issue related to the characteristic female. It is mostly ignored related to the characteristic disability although the abuse rate of the characteristic disability can be up to 12 times higher than the characteristic female(Ref 3). Perpetrators of sexual abuse in the case of disabled people are e.g.:
15-25% natural family members
15% acquaintances and neighbours
30 % disability service providers
The human rights of disabled people are violated worldwide in many ways. Disabled people are killed because of their disability they are abused misused and discriminated against in all societal settings. That is the resume of the first special report about human rights and disabled people, which was prepared by the human rights commission of the UN 1992. (TD).The Universal Declaration on Human Rights will celebrate its 50th birthday in December and it is a sad fact that this important human rights instrument was hardly to rarely used in the last 50 years for the advancement of human rights of the characteristic disability
If the above numbers are compared for other marginalised characteristics it becomes obvious that the characteristic disability is far worse off than other characteristics. So it looks as if they are not winning on the first front. But why not? What makes the characteristic disability different to the characteristic female, gay/lesbian or heritage to just name four others?
For this we have to return to the second front self esteem, self worth, pride, acceptance for which they are. And here is the key to success or non-success. The advances on the second front depend strongly on the advancement of the acceptance of a social model of disability (societal environment and behaviour disable the person) over the medical model(the disability is intrinsic to the person based on their biological genetic condition). The acceptance of the equality rights model over the charity model.
If we speak and write about the characteristic disability than it is about the pitiful object with the characteristic disability which is suffering so much or about the super crip who against all odds survives in this society or about how nice we are as a society towards the characteristic disability. Equality rights and the social model of disability do not play a role. If we speak and write about the characteristic we mostly reestablish the charity model of disability which is diametrical opposed to equality rights and the social model of disability and builds on a medical model of disability. This medical context of disability establishes the view of disability (a suffering entity to be prevented). This also establishes the tools for this goal medical cure or termination (which is diametrical opposed to social cure and equality rights). This fight medical model versus social model medical solution versus societal solution is going on for a long time. But in the last 10 years with the advancement of gene/biotechnology and the increase in the right to die debate this fight is increasingly lost. And the characteristic disability finds itself increasingly in opposition to so called bioethicists and bioethicist's ideas and philosophy.
What is Bioethics and what are bioethicists?
Darryl Macer defines bioethics the following " 'Bioethics' means the study of moral choices arising from human involvement with life. Bioethics includes an assessment ofbenefits and risks related to human interventions, especially new technologies, and looks at balancing pursuit of individual autonomy with the duties of justice. Bioethics demands that technology assessment be thorough, and include assessment of the impact upon societies and individuals (5).
Georges B. Kutukdjian says" Bioethics implies new thinking on changes in society induced by scientific and technological innovations. It fuels a public debate on societal choices and on ways of guaranteeing the informed participation of citizens. The growing awareness of the human and social implications of progress in the life and health sciences is certainly one of the most significant developments at the close of the 20th century. Thanks to the discoveries in the fields of genetics, neuroscience's and embryology, humanity has acquired the power to transform the processes of all living species, including its own. Public and private decision-makers increasingly recognise the potential impact of this new power. Scientists themselves see the debate on bioethics as an integral part of the development of scientific knowledge: a genuine need for bioethical thinking to accompany scientific research (not hamper it) and anticipate its applications (not ban them). Bioethics is derived from a dual need: to ensure that the progress resulting from this new power benefits every man and woman, and humanity as a whole, without infringing the rights of any; to identify rationally and responsibly the social and cultural implications of breakthroughs in the life sciences which concern health, agriculture, food, development issues and environment.
Norio Fujiki says about Bioethics: " Bioethics encompasses many problems of birth and death as well as quality of life. In sum, we emphasize internationally moral norms not specifically concerning how we, as human beings, should survive in this rapidly developing biotechnological period, but rather concerning the multidisciplinary process, not only within, but also between specified areas of biology and medicine with such allied fields as philosophy, sociology, psychology, law and economics.
Maurice Bernstein defines Bioethics as such "Bioethics is the study of value judgments pertaining to human conduct in the area of biology and includes those related to the practice of Medicine."
What do these definitions of bioethics imply?
1) Bioethicists are there to increase public knowledge and to facilitate the debate on bioethic related issues.
2) Bioethicists are there to look at social cultural ethical consequences of the advancement in biological science.
3) Bioethicists are there to ensure that concepts like individual autonomy self determination justice are still valid even with the advancement in biological science.
Let's therefore explore the above points.
1) Public education
It is obvious that the bioethic profession has a long way to go in that point. In North America in Canada there is in essence NO public debate about bioethical issues NO debate about the social cultural equality rights consequences of the advancement in biological science. The public still has no real idea about the broader scope in bioethical issues, how the different bioethic issues are linked together, how they might be effected and how they might be able to protect themselves. Regarding the characteristic disability the debate of bioethical issues is kind of like the debate of women issues around the beginning of the century where man talked about women health and gracefully invited women (who were not to radical) to join the debate. The Bioethic debate today seems to be like that. We talk within bioethical issues often about the characteristic disability. What to do with it. How to define them. We reclassify them (debate about personhood). We develop ethical/societal/moral frameworks to strip them off their equality rights (Latimer; Bill C-47). And all without any involvement of them (which is often justified by saying they are not objective, logical, too much emotional involved). But they are the same group as women in relationship to women's health. Women should talk about women's health and they should decide whom they want to invite to the debate. In the same way the groups effected should shape the bioethic debate and these groups would involve others. In Germany the characteristic disability shaped for quite awhile the debate together with other groups. In North America they are not involved. In Canada, people who are defined by their characteristic "disability" are largely ignored in the debate of bioethical issues such as euthanasia and gene technology. The euthanasia debate is shaped by The "right to die" and "pro life" forces and by bioethicists; The gene technology debate is shaped mostly by The medical profession and The biotechnology industry and bioethicists.
Now lets have a look at point 2) To look at social cultural ethical consequences of the advancement in biological science.
Obviously this point is also not met because you can't have a look at social cultural ethical consequences of the advancement in biological science without the involvement of the groups which are effected by the consequences. It is clear that the equality rights principle is in jeopardy and therefore equality rights groups should be looked for thought after in the debate. But the involvement of marginalised oppressed equality seeking groups is minimal. It seems as if bioethicisists became another set of experts mostly in a clinical medical setting who try to advance the medical model of humanity through philosophical ethical? principles. Equality rights did so far not play a big role.
Point3) To ensure that concepts like individual autonomy, self determination, justice are still valid even with the advancement in biological science.
Now point three is very important. The words and concepts which bioethicists are putting forward are the same ones equality rights groups are using. Within the equality rights movement these words have a particular meaning and are attached to analysis and actions and justifications. These words take on all by a sudden a totally different meaning within the debate of bioethical issues and are used in a sense that they actually promote the opposite of equality rights. The characteristic "disability" is used to advance an agenda which stands diametral against the desire of the group with that characteristic. The characteristic disability is used by the various parties that are involved in the debate of bioethical issues to justify and promote their own agendas. As a consequence, this has led to an exclusion of the group with the characteristic disability from the normal model of equality rights as a whole set of standards, morals, justifications and actions developed which people believe are only applicable for The characteristic "disability". Let's first have a look at the concept of SELF-DETERMINATION and AUTONOMY
Self determination/autonomy within the concept of euthanasia:
Sue Rodriguez based her argument for The legalisation of assisted suicide on the concept of self-determination. Self determination is indeed an important value but is the characteristic disability as represented by Sue Rodriguez the only one which is negated this right of self determination? Is the point valid to use the equality rights concept of self-determination to advance the right for assisted suicide for the characteristic disability unilateral? The "right to die" movement was fast to state that people with disabilities should have The right to determine when they want to die. Not being able to would be discriminatory. Now is this really true? I would say NO. Every person with or without a disability can commit suicide just forego food and water. The assistance is needed to allow for a dignified suicide a dignified death. If assistance for this purpose is acceptable to society, then this assistance must be given to everyone who doesn't want to live anymore. Many people, youth and natives among them, end their lives. Most of them are not disabled. Most of them have violent deaths. Why are we not offering them access to a suicide/death with dignity? Or take The Example of The prisoner. A long-term prisoner would often prefer death to a life sentence. Of the 477 death sentence deaths 12% were actually volunteers. But there are prisoners who are not on a death row but still would rather be dead than for 20 years in prison. So if one is really committed to avoid discrimination than EVERYONE must be given access to a death with dignity. So if the American Civil Liberty Union says that the right of assisted suicide should not be given to prisoners (because of their situation they are in which might make them prone to irrational decisions) than we say good bye to autonomy/self determination and equality rights. We hear bioethicists speaking out in favour of legalizing assisted suicide and in some cases also of non/in voluntary euthanasia (Peter Singer, Australia). These bioethicists base their focus mostly on disability within the concept of the medical model. I don't see the bioethic field demanding the right for assisted suicide of a prisoner. The debate of the bioethic issues Euthanasia uses equality rights terms like self-determination to actually advance non-equality rights agenda. Indeed if we would say that everyone should have the right for assisted suicide than it might be much more difficult to achieve the implementation of this goal. Assisted suicide is popular because it is tailored toward devalued characteristics in society where the negative perception makes it easy to gain sympathy (here we come back to the negative perception the medical/charity model of the characteristic disability)..
Self determination/autonomy and bio/genetechnology
The a priori assumption that life with a disability is not worth living is used to justify the development and use of predictive prenatal tests and the following prevention of this characteristic (in most cases NOT cure). The hegemony of this assumption over all others surrounding disability is so great that few analysts ever question its validity. But can the use of predictive prenatal tests be confined to severe disabilities or even to disabilities? NO! Each of the arguments used for the prevention of a certain disability (burden, low quality of life, suffering, autonomy of the parents, quality of life of a kid unwanted by parents) can equally be used for the prevention of other characteristics (gender, sexual orientation, genetic composition, heritage)
A) The argument of suffering: In Canada the abortion rate for Down Syndrome after prenatal testing is 88%. There are many reasons for this. People feel that The life of a Down Syndrome person is not worth living; that Down Syndrome people are suffering; people can't cope with The lack of support by society; people can't cope with The blame of wasting society's resources and The outcast status they will have. These are all man-made situations and reflections. Now what does a Down Syndrome person think? Do they think their life is not worth living? NO!! Do they feel they are suffering because they can't become a CEO or a professor? NO!! If members of the target group do not feel that they are suffering if they do not feel that their lives are not worth living, then society has no right to justify their actions with these arguments. If society feels they have the right to judge someone by his/her characteristic than obviously they have the right independent of the characteristic they are judging.
B) Autonomy: If parents should have the autonomy over their reproductive choices than obviously this can't be limited to one characteristic. But do bioethicists use the word autonomy in the same way as the word is used within the equality rights movements? Let's see! The Australian bioethicist Peter Singer is one who puts forward the autonomy argument to justify genetic/prenatal testing with the following option of termination. Now if autonomy of parents is really a valid argument than that has to include also sex selection as practised in India. So bioethicists should be vocal against the Indian government who forbids testing and termination of pregnancies and infanticide based on sex. But confronted with this argument he says No autonomy stops where it hurts a society. So autonomy really means 'if you behave in a way which is to the benefit of society we give you the autonomy to do what you want. If your decisions runs against the interest of society than you don't have autonomy. In essence bill c-47 (the Canadian Gene/Reproductive technology bill) makes the same point. By saying that you can only select the sex of the baby if a disease, disability can be prevented the concept of autonomy, self determination and free choice obtains a different meaning than what the equality rights movement fills it with. It suggests that a concept of free choice only exist as long as it benefits society. It suggests that society will pressure people to "do the right thing" (Actually the Royal Commission on NRT's stated that 33% of women felt coerced into aborting a disabled foetus). THe National Action Comittee on the Status of Women (Canada) actually opposes the distinction between sex selection and disability selection as it moves away from the concept of autonomy and free choice to a concept of an Animal Farm type of concept (Some characteristics are more equal/valuable than others). This segragation, this pitting one characteristic against another is a typical situation of an injustice society. And if this principle is established than it can be used again to segregate other characteristics like women from man). But the reality in the moment shows that the people attached to the equality rights movement who have rebutted the concept of free choice as one for the ones who are with power are right. Choices are based on the situation you live in. And if you are poor and know society won't support you do you have an option with what child you can afford?
C) Life as an unwanted kid is terrible. This argument is often used to justify abortion in general and abortion based on the unwanted characteristic disability as a whole. But of course to say if parents don't want a female but hey to bad you have to live with it does not enhance the situation of this kid with the unwanted characteristic female.
Indeed I believe a medical solution testing and termination or cure can't be the solution. The solution has to be a societal one with a societal cure (Attitude change, acceptance ...) but that goes for every characteristic. To view disability within the medical model but to view other characteristics such as gender, sexual orientation, heritage within the medical model is unacceptable, Anti equality rights and actually against the UN definition of disability which uses the social model.
Lets examine two more words which play a big role within the equality rights seeking groups.
A) the definition of person and B) the term discrimination
So far handicapped humans are not recognized at all as equal human right subjects,. But that seems to be not enough. A debate within bioethist circles is very strong to redefine the concept of personhood and who has a right of human rights. There are moves to out-defined some members from the disability community from the human right protection as outlined in the Helsinki Declaration. The Universal Declaration on Human rights is very clear that EVERY human being is born with the same intrinsic dignity and intrinsic human rights. Human rights are not something which human beings have to acquire. Just by being member of the human race they have these rights.
The development of the non person which was first used in Roe v Wade to label the fetus as a non person is now broadened to include newborns up to a year, comatoese people and people in a Persistent vegetative state. The development of the term non person allows the development of a separate moral, justice, rights system for them versus the ones who are persons. This approach allows the justification of infanticide a idea long cherished by philosophers from Aristoteles to Plato to today's contemporary bioethicists (Peter Singer, Australia; Joseph C. Fletcher, USA; Tristam Engelhardt, USA; just to name three). But which characteristic would be targeted for infanticide? Obviously we do not go around randomly killing newborns. Earl E. Shelp e.g. sees characteristics in newborns such as Down's Syndrome, Spina bifida, blindness, paralysis, or any handicap that would impose upon others an unreasonable grave disproportionate or incommensurate burden fit for infanticide. Peter Singer, Australia uses Haemophila as an example. To deny a characteristic to be viewed as a person is used for centuries to devalue a carrier of this characteristic. Women where viewed as Non person even at the beginning of this century.The ones who fought for that women are declared persons will get a monument on Parlament Hill in Ottawa, Canada. Unfortunately at least three of the five women where racists, eugenicists and so we pitt again one characteristic female against another here race, disability and promote again the picture that one characteristic is more worth than another. So to be disenfrenchised from the community of persons is a serious threat to the characteristic disability.
The word discrimination is very well understood in the public as it is of course one of the major argument in achieving equality rights. So if people read in e.g. the UNIVERSAL DECLARATION ON THE HUMANE GENOME AND HUMAN RIGHTS that genetic discrimination is forbidden than every one will say right on. But reality is that for many members of the characteristic disability this is a futile prohibition as this discrimination is based on humans who are born. Discrimination based on a characteristic detected prior birth is not part of it. Indeed if it would be that would mean that bill c-47 would be in violation of this Declaration as it makes a distinction between sex selection and disability selection. (An accompanying document to bill c-47 even says that sex selection should be forbidden because it is sort of sex descrimination to allow it but seems not to think that therefore disability selection should be forbidden because it is disability discrimination). So even the word discrimination is used discriminatory based on the characteristic.
Let's give you now another example within the debate of bioethic issues where we see a discrepance in meaning based on which characteristic we are talking about.
On the tail of the Assisted suicide debate we see an increased acceptance of Mercy killing and infanticide if the characteristic disability is involved. The popularity of Latimer is immense. And the demand for an overhaul of the legal system to allow such thing as a compassionate homicide category is growing at least if the characteristic disability is involved.
If we look at this debate how many equality rights principles are broken?
1) The Universality of human rights as an intrinsic part of every human being.
2) The principle of Non discrimination and equal protection in front of the law
3) The principle of autonomy
4) The principle of beneficence
5) The principle of self determination
And the above is again justified by society judging the quality of life of a carrier with the characteristic disability. Again if it would be about equality than there would be no argument to limit the above approach to the characteristic disability. It would have to include any characteristic because the principle that society/parents have the right to judge someone else quality of life can be extended to every characteristic not just disability.
What are the consequences for the characteristic disability regarding the lack of an equality rights angle within the debate of bioethical issues?
1)Replacement of a sanctity of life ethics with a quality of life ethics
Let's give you some quotes for that
Francis Crick said: No newborn infant should be declared human until it has passed certain tests regarding its genetic endowment and that if it fails these tests it forfeits the right to live
Joseph Fletcher considers medical treatment for individuals with Downs syndrome a waste of resources because it would needlessly perpetuate the existence of a sadly non or un or subhuman creature.
Daniel Callahan wrote: a denial of nutrition may in the long run become the only effective way to make certain that a large number of biologically tenacious patients actually die.
Joseph Fletcher said: incorrigible human vegetable is constantly eating up private or public financial resources in violation of the distributive justice owed to others
And I could go on. There are hundreds of quotes showing the negative, dehumanizing perception of the characteristic disability.
Quality of life ethics is nothing else than a justification for cultural eugenics and euthanasia. Society as a whole as expressed by their individual members decides a characteristic is not worth living. Without any decisional power by that target group itself.
2)Substitution of the "right to be healthy" principle (which is the basis of universal public health care coverage) with a "NO right to be unhealthy/not mainstream" principle.
Once the concept is established that we, the society, can judge a characteristic to be worth living or not, then every characteristic judged accordingly is fair game. In both cases (euthanasia and gene technology) the decision about which characteristic it will be applied to is based on cultural and societal values. In essence it is cultural euthanasia and cultural eugenics. And the increase in cultural eugenics and cultural euthanasia has devastating consequences for the targeted community. In Canada the characteristic "disability" is getting from bad to worse related to negative perception, pity low respect and equality rights ( I mentioned some parts in the beginning) that automatically excludes this group from a rightful place within the human right's movements, within the bioethics debate, within the debate of regulatory frameworks of the use of euthanasia and gene technology (e.g. we are not involved in the development of a standard in genetic counselling in the training of genetic councillors although we are the target group.) and within society.
3)Increase of the medical model versus the social model of disability
A society that increasingly believes in individualism, in self reliance and in less government indeed has no other option then to think about disability in a negative way. To depend on people, to be powerless is the ultimate disaster in the society of today. It is nice to be a volunteer but to rely on a volunteer (family, neighbours, and strangers) is a patronising situation as there is no right to demand anything (from the volunteer); no right to a certain standard. No one wants to be in this situation and many abhor just this thought. As a side effect of less government we see an increase in demand for charity money (that concept by itself is demeaning and patronising) and the only way charities get money is by reinforcing the negative stereotype of the characteristic "disability". The increase in the debate of euthanasia and the technological advancements in bio/gene technology have led to an increased stigmatisation of the characteristic "disability" and an increase pressure to justify being disabled as it is viewed as not worth living. This situation leads to the desire to fix the characteristic disability whenever possible or prevent it if it can't be fixed. It leads to medical solutions (cure or prevention) and less to social solutions (more support, understanding).
But is the lack of an equality rights angle within the debate of bioethical issues only effecting the characteristic disability? Or who could be part of this characteristic?
Cultural eugenics and euthanasia will effect more characteristics than people realize. A report (Priorities for Genetic Services in New Zealand) to The National advisory committee on Core Health and Disability Support Services 1995 states that " 60 percent of The population will be affected in their health during their lifetime by a genetic condition". People often say that if they think about genetic testing they mean conditions like Tay-Sachs But that's not realistic. Why would companies develop all these tests if no one uses them? Why would people use the tests if not for termination as most conditions do not have the option of treatment or cure? You don't make money for a test for Tay Sachs. The money is in conditions like diabetes, osteoporosis, diabetic retinopathy, Alzheimer... .
So in my view it would suit society to rethink the individualism to rethink the inequality attached to bioethical issues.