An Interview with Gregor Wolbring

(October 14, 1998 — In this interview, Dr. Wolbring analyzes the social context that has given rise to cases like Latimer and suggests a message that can be promoted to the media to counteract current stereotypes about disability.)

What are the dynamics that people need to point out when doing public education on the Latimer Case?

Devaluation— It is very clear that there is devaluation of people with disabilities. When you look at the Susan Smith case [Smith drowned her two small boys and then reported that they had been kidnapped], there is no way that she would have gone home free after she killed her kids. She used divorce as her excuse. Latimer used his child's disability as his excuse. As an excuse for murder, disability is much more accepted by society.

Negative Attitudes—We have known for a long time that disability is viewed in a very negative manner. As a person with a disability, when you go on the street, very often people will offer you money or they will attempt to console you and tell you not to despair. We know that we still have institutions and deinstitutionalization goes on very slowly. We know that we have a high abortion rate for Down Syndrome children and increasingly for other detectable disabilities. We have a huge push for genetic testing that can prenatally detect disability. In the West, there is a push for health, independence and self-reliance. If you cannot fit this type of criteria you are viewed as having a low quality of life and you are viewed as an object. Because many in the general public, view people with disabilities as having a low quality of life, they see Latimer as having done the only responsible thing. If they view disability per se as a harmful thing for the child, then Latimer did the only thing possible to prevent further harm coming to Tracy. A lot of people view Latimer this way. In this case, the media, in a very pronounced manner, emphasized the themes of suffering and the low of quality of life with a disability and reinforced negative stereotypes about disability. From this kind of background information, the general public are led to believe that Latimer did the only thing that was open to him.

Not Something New—Latimer is not the first case. This has gone on for years. Over and over again, people have killed their kids because they were disabled and they have been dealt with in a sympathetic manner. It is not something new. It has just become more public.

Just take a look at the Senate report on euthanasia and assisted suicide. They were against the legalization of the Sue Rodriguez-type of assisted suicide, but wanted to have a new type of homicide—compassionate homicide—for the Latimer-type of case. It seems that people feel that you can misuse assisted suicide but compassionate homicide seems to be viewed in a more sympathetic manner.

A Different Morality—Negative perceptions about disability are so ingrained that they foster a different morality. For example, when I talk to people who are on violence and abuse committees, even they do not see that Latimer committed the ultimate abuse. Some of them view Latimer in a sympathetic way.

Wherever we look it seems that just the label disability is offering society or society is using the label disability to permit a different moral standard. For example, this different morality also explains what happened with Bill C-47, which was related to gene technology. With Bill C-47, [which died on the order paper] [prenatal] sex selection was disallowed but disability selection [for the purpose of elimination] was allowed.

In the Katie Lynn Baker case, a bio-ethicist said that the child should have the right to decide whether or not she wants to die. [In this case, Katie Lynn's mother allowed her to starve to death. One of the manifestations of Katie Lynn's disability, Rhett Syndrome, is a disinterest in eating. Katie Lynn's mother claimed Katie wanted to die.] This is so strange. The kid has no right to drive or conduct a business transaction but should have the right to decide to die. This, of course, is only in cases of disability. We have to get rid of this double standard, this double morality on all issues.

Once we are viewed with a different standard, it can be extended to many different levels. Then we lose our access to equal rights because we are viewed differently. That is the absolute danger.

Linking to the Bigger Picture—More people need to understand the bigger picture. Euthanasia is linked to genetics, the changes in the definition of brain death, issues in transplant medicine such as who gets access to treatment and who does not get access. All these happen against a back drop of devaluation of a target group in society.

If you allow the selective use of technology [i.e. whether that be genetic testing or other means] to get rid of disability, you have lost your moral ground to prevent the use of the same technology to get rid of other groups in society in an equally selective way whether it is gays and lesbians, whether it is the elderly, etc. Society will decide for which groups it is acceptable to use a selective standard. We are only the first ones.

What message should consumers provide to the media when discussing the Latimer case? One thing to say is that the Latimer case was simply murder and that there cannot be any acceptance of murder related to the fact that there is the feeling that the victim had a low quality of life.

Another thing to say is that disability per se does not mean a low quality of life. They can point out to the media that if low quality of life is a reason for murder and for the acceptance of murder, as it seems to be working in the Latimer case, then there are other groups in society who have the same or an even lower quality of life. There are Natives, poor people and so on. That would mean that if you let Latimer go free because he did the only thing possible for his daughter, then you also in the end sanction that everyone who thinks that their child does not really have a good quality of life can kill their kid.

Take the living situation on the Stony Reserve near Calgary. Many people judge that living conditions there are of a poor quality. Does that mean that they can go out and kill their kids?

Obviously, we have to make it clear that what Latimer did has nothing to do with compassion, has nothing to do with doing the right thing as a dad, and that it was the ultimate abuse and not a compassionate thing to do.

If we are not vigilantly opposed to these defenses then we are losing. As a movement we have to say that these defenses are not acceptable. For example, what happened in the Blais case. Depression is not an acceptable defense. The same with Latimer—because you feel someone has a low quality of life or is in pain that does not mean that you have the right to murder them.

It was the same with the Katie Lynn Baker case, where the mother actually used the condition [Rhett Syndrome which causes a disinclination to eat] of the daughter as a tool—by starving her to death. This is not acceptable. We have to speak out against it. If we do not have a united front on these issues, we have lost.

In cases like Blais, we have to say that Blais has done something wrong so she has to go to prison. The answer is not to be sympathetic with her. The Autism Society of Montreal should not have supported her. Cases like Blais, give the public the message that disability is viewed with a different standard.

Why don't our traditional allies in the equality rights movement not speak out more on this issue? It is one thing to support us on access, but then again there is not really a lot of support on access issues, at least not in public ways. For example, many groups are still working in buildings that are not accessible to us. I definitely do not see these groups supporting access publicly and that is the easy issue.

Now, with euthanasia that is a much more complicated issue. Most people in the equality rights sector have the same fears that the general public have: the fear of death, becoming disabled, having to be dependent upon other people. Just because they are in favor of equality rights does not mean that they have a different view of death and dependency.

As these movements are made up of individuals for them to take on the issue as a movement, it is an impossible situation because they will not be able to get their members behind it. Most of their members are not really viewing people with disabilities in a positive way. Quite a few, perhaps, view disability positively but the majority do not.

To take on the issue would put strains on their own movements. They do not really have the resources and the power inside their movements to take on the issue of euthanasia.

In Europe, how do people with disabilities strategically approach euthanasia? It is a strategy where everything is viewed together under the social construction of disability model. Euthanasia, genetic testing, pre-implantation diagnostics, changes in the definition of brain death, etc. are viewed as different techniques that are used for the same thing—to rid society of disability and disabled people. Once we had people working together and understanding the dynamics, our people went out to the different movements that they were a part of. So, for example, people went and talked with the women's movement and now they speak out and publicly promote our positions. For example, they speak out against Peter Singer who promotes the killing of newborns with disabilities. There are also more connections with the churches and other types of organizations.

It does not really mean that we are winning in Germany or in England. Even there it is a hard fight to convince people that if you allow the selective use of technology to get rid of disability you have lost your moral ground to prevent the use of the same technology to get rid of other groups in society in an equally selective way.

In the US, there really are no coalitions between the disability movement and other groups, at least nationally. The gene technology people are opposing modified food and genetic engineering of food but most of them would not tackle genetic engineering or gene technology to get rid of disabilities through genetic testing or abortion. So even in that group you have ambiguity about what they feel is acceptable. I think that we have to work with these groups to make them understand that their arguments are becoming untenable.