According to the Oxford Dictionary "eugenics is the science of improving the population by control of inherited qualities". What does this definition mean? It means

  1. that eugenics is not associated with a cell, a zygote, an embryo, a fetus, a person, a human being or mankind. It is associated with a characteristic of a cell, a zygote, an embryo, a fetus, a person, a human being ( newborn, toddler, child, adult, elderly) mankind.
  2. that preimplantation diagnostic, prenatal testing, post natal testing, mercy killing, involuntary euthanasia or non voluntary euthanasia are techniques which can be used in an eugenics fashion.

From the above it becomes very clear that eugenics is happening all the time around the world. We discriminate against and eliminate unwanted characteristics (whether they are inherited or not).

How does society decides for which characteristics the use of eugenic measurements are okay? One characteristic of the targetgroup for elimination is that their characteristic is viewed in a negative way. Their characteristic is devalued and associated with the thought that their characteristic is a burden to society and ensures a low quality of life to the carrier of this characteristic.

In India the label disability and female is viewed as such and therefore the widespread practice exist in India to eliminate the characteristic disability and female.

In Canada and most other countries disability but not female is viewed as such therefore in these countries the widespread practice exist to detect and if possible to eliminate the characteristic disability e.g.down syndrome but not female. In the UK the British Medical Association recently condemned reproductive techniques which can assure to 90% a certain sex of the fetus. They said that it is unethical to assure a certain sex for the fetus. The only reason where this would be not unethical is if a disease can be prevented. And they used than hamophilia as an example.

Why would the characteristic disability cause these thoughts in most of the countries in the world?.

Today we monitor the "health?" of our population at every stage of life; in the test tube with the help of preimplantation technology, in the womb with the help of prenatal testing and after birth towards our death. And this monitoring leads increasingly to the termination of the incurable disability, the incurable genetic "defect" through non selection of the "defect" cell or the abortion of the disabled fetus. It also leads to the termination of treatments of newborn and older disabled the killing of disabled (mercy killing) and the increasing demand for physician assisted suicide. In Canada it is obvious that the carrier of the characteristic disability is much more devalued than the carrier of the label male or female. I will give you below many examples. That different view of value of the label sex and the label disability might be behind the demand of the Royal Canadian Commission on New Reproductive Technologies to give a special protection status to the label sex but not to the label disability. They concluded in their report that to use prenatal diagnostics to determine sex, and abort fetus of wrong sex is "against Canadian values and violates principle of respect for human life and dignity". They don't conclude the same for disability. Here comes for once the question to mind why the label disability leads to the loss of the principle of respect for human life and dignity? And the answer is clear. In the eyes of Canadian society disabled are suffering. Females or males per se not. Therefore there is a compassionate reason to abort the fetus who will be disabled but not the female or male. And for the same reason did the human reproductive and genetic technologies act (BILL - C47) followed the recommandation of the Royal Commission on NRT and introduced among others a ban on sex selection for non-medical reasons. This means you can do sex-selection if a disability like a X-linked hereditary disease like for example haemophilia is prevented. Bill C-47 died on the order table but when it is reintroduced it will be interesting to see whether the eugenic component is still in it. But the bill with it's eugenic approach had also one other consequence. If someone believes in the free choice of a women than this person better wakes up as bill c-47 clearly indicates that there will be no free choices for women anymore only of course society sanctioned free choice which is no free choice anymore.

Why do we point the finger at the sex selection practice in India but do not see our behaviour of disability selection? Do we not see that the female in India is in the same position than the disabled around the world? The economical and other problems associated with giving birth to a female in India is only a result of the devaluation of females in East Indian society. Western societies are slaves to the words "healthy, normal, self reliant, productive" which leads to the devaluation of disabled people and the perception that disabled people have a low quality of life.

Now it is a widespread phenomenon of connecting different forms of living/life with quality of living/life. For example, it is possible to detect a genetic anomality associated with a lifeform called Trisomie 21 or down syndrome. There is no cure available. So why are we using genetic testing in this case? We use it to prevent people with down syndrome from being be born. Why? We do it with the argument that the quality of life for the down syndrome child is not good that the DS child is suffering and that the DS child is a burden to the family and to society . This line of arguments is as more accepted in societies as more societies detach themselves from their responsibilty towards individuals in the societies. Problems are becoming increasingly the problems of the one causing it instead of the problem of society. For example, in an intact society society would try to help and support the family who gives birth to a DS child. In a society where we have the development into the direction of an individualistic responsibility we say that the family with the DS child better copes with the problems attached with the DS child. Now imagine the case that this family is having a prenatal testresult telling them that their baby will have DS. If this family does not have support for example by their friends or larger family and are just educated by the negative image attached to DS of course they will decide for abortion. Surveys of physicians from France show that even disabilities like haemophilia or dwarfism are targeted for termination through second and third trimester abortion.

Terminated
During
Second
Trimester
Third
Trimester
Cystic Fibrosis 70% 54%
Haemophilia 41% 23%
Spina Bifida 86% 78%
Sickle Cell 55% 39%
Limb Reduction 43% 26%
Trisomy 21 91% 78%
Dwarfism 63% 48%

Now you can say this is in France therefore I will give you a few numbers about what physicians in Quebec think about selective abortion.

For Abortion Anglophones in Quebec Francophones in Quebec
75 - 100% trisomy21
muscular dystrophy
Huntington disease
66 - 74% cystic fibrosis trisomy 21
60 - 65% Huntington disease
cystic fibrosis
30 - 59% phenylketonuria
spina bifida
heart defect
lobster-claw defect
Huntington disease
muscular dystrophy
spina bifida
heart defect
cystic fibrosis
0 - 30% sex selection sex selection
phenylketonuria
lobster-claw defect

In that survey it is also mentioned that there is a above 30% consensus for abortion for a fetus which contains the possibilty of developing a disability such as Alzheimer or schizophrenia

A survey of women in France showed that the agreement with the induced abortion of a severely malformed fetus is at 90% agreement for the first trimester; 73% for the second trimester; 56% for the third trimester; and the euthanasia of a malformed newborn child 52%.

And it is not just these french women who make the link between abortion of a disabled fetus and termination of the life of a disabled newborn. Peter Singer a Australian professor for bioethics has written in his book from 1979 "Practical ethics" that it is morally okay to kill a newborn disabled for example haemophilia if the mother for example would by that get another chance of giving birth to a healthy baby. In 1979 there was no prenatal testing available. Today you can get rid of haemophilia in a much cleaner way (see proposal of bill c-47). Peter Singer is also very clear in his book "Rethinking life and death" (1995) that time boundaries in dealing with a label are arbitrary, not logical and up to changes and that the only measurement on how to deal with a label should be the quality of life to be expected. This argument of Prof. Singer becomes very striking in England where the abortion law allows abortion till the 24. week. But if the fetus is "defective" the abortion can take place on the day of birth. The above are all manifestation of a devaluation of disability.

Now where else does the label disability lead to different treatments?

For one the issue of abuse.

If we compare the abuse and violence against disabled people with the abuse and violence against women and children it appears that they have one thing in common. Women are mostly affected by domestic violence and abuse. Children are sexually abused, beaten, humiliated and intimidated by adults mostly from the family or friends of the family. Disabled people are mostly abused by caregivers whether it is the family or other disability service provider.

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
0-5% strangers

But the situation for disabled people is worse than for the other victims in at least 3 major points.

  1. Disabled people are the highest risk group for abuse and violence and society is taking the least notice of this problem
  2. The support for disabled victims is much less available than for non disabled victims
  3. The abuse and violence against disabled people is much more accepted and less punished than for the other victims groups

To point 1...

A variety of studies exist which show that disabled people are between 2-12 times more likely to be abused than non disabled people depending on the age and the disability. The highest grade of victimization is observed with developmentally disabled people. I just want to pick one very drastic survey. I would like to mention the survey carried out by DAWN CANADA a disabled women's organization. 381 disabled women took part in a suicide and abuse survey. In that survey the following numbers were found. 51.1% of the women had experienced sexual abuse; 66.3% had experienced emotional abuse; 43.1% had experienced neglect; 34.8% had experienced abandonment.

So the first difference between the abuse of children or women and disabled people is in the numbers. Disabled people are much more likely to be victims. And society is absolutely not aware of the extend of abuse against disabled people or chooses to negates these problems because it does not fit into the picture how we view disabled people. You who are nondisabled are supposed to be the good guys who help me the poor pity object out of your good heart. Abuse does not fit this picture and is therefore negated and ignored.

To point 2...

Effects of Violence

There are of course a variety of effects of violence. A variety of emotional disorders and symptoms have been described among victims of violence. Again I would like to mention the survey carried out by DAWN CANADA. The first round of analysis showed that 58.7% of the women who responded to the questionnaire had thought about killing themselves. Abuse is strongly related to suicidal feelings.

This is the second difference. Suicide prevention programs exist for a variety of victims (children, women) and minorities as for example the natives. No suicide prevention programs exist which tailor towards the special need of disabled people and no awareness is raised in society that disabled people are actually the group of society which is the most likely one to be abused.

To point 3...

Punishment of abuse

Offenses against disabled people are often treated less serious than Offenses against women and children. Different euphemisms are used to describe crimes against disabled people and against women and children and the different use helps to provide a rationale for reclassifying serious crimes especially those committed within human services, into mere "administrative infractions".

For example:

General term Term applied to disabled victims
Assault Psychological abuse, threat
Battery Abuse, punishment procedure,
aversive treatment,
physical prompting,
assistance, guidance
Crime Infraction
Homicide Euthanasia, neglect,
medical discrimination
Murder Euthanasia, neglect,
assisted suicide, allow to die
Rape Abuse, professional misconduct
Sexual assault Abuse, professional misconduct

In summary I would like to say that disabled people are at higher risk to be abused the offenders are likely to be treated more lightly and societies awareness of the situation of disabled people related to abuse is lower than with the non disabled people.

Therefore we need to increase awareness, increase support programs for disabled people and equal the treatment of Offenses in front of the justice system.

Another example of the devaluation are the mercy killing cases.

The Latimer (cerebral palsy) the Lynn Baker (Rett Syndrome) and the Blais case (autism) are brilliant examples of the different standards. Latimer and Blais have abused (killed) their children to the fullest extent possible. Lyn Baker was starved to death. But why is the action of the parent not viewed as murder as abuse of a disabled person. Why are they not in prison? Latimer used the excuse that it was better for his kid. She would be just suffering. Lyn Baker's mom said in her defence that her kid didn't want to eat (which a manifestastion of the medical condition the kid had namely Rett Syndrome) and live anymore. And in the Blais case the mother claimed that the lack of support for her and her kid drove her to the action. And society buys into it and is full of support for the killers and neglecting mother (in the Lynn Baker case).

Now how does devaluation play a role in the euthanasia debate?

The link is again the selective use. Ass.suicide might be legalized in the nearer future in Canada but of course only in the case of the unbearable suffering disabled. Again there we have the special treatment of disabled with a physical disability. Why not generally allowing Ass. sui.? There are enough people out there who simply cannot cope with the coldness of society (see the high suicide rate in the native reserves). They do not think there life is worth living. Why not give them access to a humane death. Why do they have to hang or shoot themselves? If they can't cope with society why not help ease there access to death? Most people will say "NO" and there we are because of the devaluing picture of society of disability and only because of that we are thinking about the legalization of Ass sui. for physical disabilities. And in the same way as with the case of abortion more and more disabilities will be found to be suitable for ass. sui. It will not stop at the so called terminal ill person. It will include more and more disabilities and in stages which are not terminal (see Jack Kevorkian who helped people with Alzheimer to die who were not in the terminal stage).

And now the circle is closing.

If we as a society believe that the label disability is equal to low quality of life only under that assumption it is understandable that we push for termination in every stage.

Again the acceptance of disability, disease testing and termination (pre,postnatal), assisted suicide for the disabled voluntary euthanasia, non/in- voluntary euthanasia (murder) of the disabled is achieved by society perception that disabled people are suffering and that our life is not worth living. And we have to be relieved of our suffering through termination of our life or life to be as cures are mostly not available. Medicine moves from getting rid of the DISEASE to getting rid of the DISEASED.

In order to regain the control we have to oppose the use of negative pitiful characterisation of disabled people in this society and we have to make clear that disablity is a sociatal problem not a medical one.

We the disability movement have to work in a broad alliance with other movements such as the feminist movement, the Anti gene-technology movement, and with the churches, the Jewish high council and single people for example people with AIDS and other people of society in OPPOSING the selective use of technology and in OPPOSING policies which have in mind to free society of disabled people in every possible way. The attempt to get rid of disabled people has been going on forever. It is increasingly carried out through technology and medicine rather than physical violence (though that still happens too) but is no less brutal for that. We the disability communities all over the world have to work to eliminate the idea that society can be "cured" of its disabled members,by medical means and that such an event is desirable. A social cure should be pushed forward. Attitudes and environments must change to include disabled people, rather than warehousing us in institutions and keeping us marginalised through "special" services for "special" people. Cure for us includes physical access, information in accessible formats, independent self-determined living, acknowledgement by the whole of society of the variety and value of all human experience. The majority of people who live beyond middle age will have experienced temporarily or permanently some impairment. It is terror and denial of this basic fact and ignorance about disabled people disguised as pity, that means we are kept separate, killed or "prevented" so that others can forget that potential within themselves for impairment.

Gregor Wolbring
email: gwolbrin@acs.ucalgary.ca