by Devin Lind
Editor’s note: contains detailed explanations of legal practices of euthanasia and eugenics.
In the Netherlands it is legal to euthanize children up to the age of 12. There were 22 reported cases between 1997 and 2004, and all cases concerned newborns with spina bifida and hydrocephalus.
For the Dutch public prosecutor, the termination of a child’s life (under age 12) is acceptable if four requirements were properly fulfilled:
- The presence of hopeless and unbearable suffering
- The consent of the parents to termination of life
- Medical consultation having taken place
- Careful execution of the termination
I have found no clear definition of the term “hopeless and unbearable suffering,” but to me it sounds quite subjective. Thankfully, this is not legal anywhere else. But still, it’s one country too many.
When I was born with spina bifida 35 years ago, I was one of about 75 children born with SB that year. Now, that number has dropped to 22. In part, perhaps, due to people eating more folic acid, but that does not explain such a massive drop. Turns out that around 80 of the fetuses with spina bifida are aborted after week 16.
In Sweden, we’ve had free abortions since 1975. What this means is that you can have an abortion up to the 18th week of pregnancy. Most abortions are performed during this period. After week 18, the Legal Advisory Council (LAC) of The National Board of Health and Welfare in Sweden (NBHW) has to approve of the abortion and there have to be special reasons. After week 22, no abortions are performed as the child is usually expected to survive, if born. 53 percent of all approved abortions and 46 percent of the total number of cases to the LAC in 2002 were due to the fetus having a disability/illness.
For over 35 years, I’ve heard people say: ”If I found out I was expecting a child with Down syndrome/spina bifida/a disability, I’d have an abortion.” In my teens, I used to say that “if I found out the baby we were expecting was NFN*, I’d abort it.” (* NFN = “Normal for now”, i. e., not having a disability). People, also NFN, were usually shocked, some even outraged, by my statement. To them, deciding to abort a ‘normal’ child and welcoming a child that was ‘less than’ was just too foreign a concept.
And despite it being illegal, so called ‘mercy killings’ still occur.
On March 6, 2012, Elizabeth Hodgins shot and killed her 22-year-old son George, who had autism, before killing herself. Media soon painted a picture of her as the victim – that taking care of her disabled child was so difficult that it was no wonder she let him die, and then killed herself.
As if this was not enough, those of us who do make it, or those of us who were not born with our disability, sometimes hear people without disabilities say TO OUR FACE: “If I had/got a disability, I wouldn’t want to live.” Which is, you know, really rude. This also reflects how many people without disabilities see those of us who do have disabilities – as less than, not viable for life. Not a ‘worthy, good life’, anyway. Whatever that is. Still, this is one of the major reasons why we are aborted, ‘euthanized’ – MURDERED.
A person who has lived most of their life without a disability but then finds themself living with a disability often becomes depressed. Now, this is understandable. Life changes can be very challenging, and without the right support they can be hard to deal with. This is why getting that right support at the right time is crucial, so that you don’t have to spend a year and a half in the hospital because you can’t get the personal care attendants you need after becoming quadriplegic and end up in a death clinic in Switzerland (where assisted suicide is legal) because you don’t want to live anymore.
In Sweden, there was a case last year that ended up in the NBHW where a woman with neurofibromatosis that could not breathe without a ventilator wanted to cease her treatment, i. e. shut the ventilator off. Ceasing treatment is legal in Sweden, but since shutting a ventilator off often means the patient will suffocate and die, there was some debate and confusion whether or not this was, in fact, euthanasia.
One could claim that as an adult, it’s up to you to decide what to do with your life. But so many of us never get to make that decision for ourselves, it is made for us, ‘in our best interest’.
With the right support, people with disabilities can lead ‘normal’, good lives. We just need to be given that right support. But instead, we are seen as sufferers, burdens, ‘less thans’, whose lives seem so unbearable to the NFN majority that they’d rather see us dead.
As a result, the world has been robbed of people like George Hodgins, Tracy Latimer and countless others who never made the headlines.
disabilityrightnow 
It’s really unfortunate that the disability self-advocacy struggle seems to be getting drawn into conflict with the pro-choice/feminist movement. I support free abortion just because I don’t think the government should be able to judge whether or not anyone can terminate a pregnancy, but I would never support a parent’s “right” to euthanize a child (as opposed to a fetus- no, I do not necessarily feel they’re the same) that has already been born. Euthanasia, if it is legal, should only be available to adults who can consent on their own behalf, at least in my opinion (I actually feel the same way about any “cure” for autism that might somehow be discovered, but this is moot since that’s not likely, given the nature of autism).
As for abortion, you can’t restrict it without limiting reproductive freedom. A problem is not that women have these rights (for now at least) but that we often lack the information to make sound decisions. This is especially true for prenatal disability screening- most women don’t go in knowing, “it’s possible to live with this condition,” just that the condition has all these negative symptoms and scary statistics. One possibility would be that before the screening process begins, the doctor could give the woman a booklet with basic and non-inflammatory information on each condition being screened for. She could read it or not, but at least she would have the means to become informed, and not make a decision based on fear. You can lead a horse to water, but you can’t make it drink.
Excellent and thought-provoking article. I am highly uncomfortable with the vagueness of the Dutch phrasing as you outlined it. I am, however, generally a strong proponent of euthanasia (as per the Greek meaning of “a good death”) in cases of terminal illness, so I can certainly see situations where a person (or child) is nearing the last days of life and is UNsaveable and in terrible pain…and hastening that inevitable end…I can see that as a kindness.
In the case of euthanasia because a child’s disability is considered “hopeless and unbearable”…that is a frightening and slippery slope. I believe some disabilities DO fall into this category…but in those cases, the condition is usually more accurately termed “terminal condition” rather than “disability” (see below re: Tay-Sachs). And I would hope (though I do not know one way or another) that Holland, if it is going to allow parents to euthanize a child, would also offer extensive and strong support of families in coping with disability and dealing with the costly and exhausting medical realities of many disabilities. I cannot imagine, however, that this is likely, and that is DEEPLY and expansively problematic. As Devin states above, in a situation where a live child is killed when that child’s life is not at immediate risk, and especially if this is allowed without first offering support to those parents who want to care for and raise children to be self-sufficient adults, that is a huge failure of society to support the rights of all citizens.
When the discussion is moved back before birth, and then before viability, I am entirely uncomfortable with refusing abortion care (and am jealous of the availability and no-cost abortions available in Sweden). I have terminated two pregnancies (after having two children…all four pregnancies with the same father, to whom I am married), both without testing, and both for familiy planning reasons after failure of first one, then a second surgical sterilization.
My husband and I have both worked in and studied disability issues and I am sure he has different mental lines than I do. I know, however, that were I to learn that I was carrying a child with a condition inconsistent with life (ancephaly, Tay-Sachs, Trisomy 13 or 18), I would terminate that pregnancy at that point rahter than continue only to watch an ever-more-beloved child suffer and die slowly (over minutes, hours, days, or weeks…and, in the case of Tay-Sachs, 1-3 years). I would do this out of love for that fetus-someday-child *and* the children I already have.
However, aside from conditions incompatible with life…I find that the idea of terminating due to a disability with which an individual can live a full life (spina bifida, Down Syndrome/Trisomy 21, various forms of genetic blindness/deafness)…that is a thornier issue.
Of course, as a citizen and resident of the United States where there are ever-increasing restrictions, limitations, and outright prohibition on all types not only of abortion but even birth control and SIMULTANEOUS restriction on and reduction of options to obtain medical care and insurance…I would question whether my society has ANY investment in ANY life other than that of those able to pay for their every whim. I know that my son would benefit from additional speech therapy…but my (very, very good) insurance doesn’t cover this. We have a friend with a severe disability who CANNOT AFFORD TO WORK because if he makes ANY money, he will lose ALL the benefits that KEEP HIM ALIVE….and he’s one of the lucky ones who HAS enough care to stay alive (not to thrive, but to stay alive).
Until society is ready to accept and CARE FOR all citizens (those with disabilities and those helping care for those with disabilities…whether they be family or carers who are paid…in the U.S., paid at poverty-or-below-poverty wages), this question and concern will remain. Until, as I saw said somewhere recently, money and care decisions are placed IN THE HANDS of people with disabilities to manage their own decisions and care (where possible…as not everyone can make such decisions), these concerns and issues will remain.
We have–all of us–a long way to go.
Maddie – Thank you for your comments! To clarify: I do not want to abolish abortion, and agree with you that it should be an even more informed decision than it is now.
Amy – I find the subject of euthanasia in general to be a slippery slope. Suicide among people who are considered NFN, no matter how much the individual suffers, is something society tries to prevent; suicides among people with disabilities/illnesses is welcomed rather than prevented.
“I would question whether my society has ANY investment in ANY life other than that of those able to pay for their every whim.” – It’s a scary thought that, unfortunately, seems to be the prevailing one right now.
/Devin
Excellent article, Devin. I am NFN, and have for years been dismayed and disgusted with the attitude that people special needs are “less thans.”
Thank you, Liz.
/Devin
I am a person with a disability. It is up to each individual to decide if they choose to live with an untreatable condition that robs them of their quality of life. This article assumes that everyone will want to continue to live with a severe disability, if they are given the right supports. This is simply not true. Each person has the right to decide their own destiny. That is what self-determination is about. What is an acceptable quality of life for one person is unbearable to another.
The fact that these children do require unreasonable amount of support and put excessive amount of stress on their parents and society give them the right to choose to terminate them. If families with means want to support a severely disabled person who will never be able to contribute to society and function on their own without extensive assistance for life, that’s noble of them. If families cannot afford that, or choose not to put themselves through such life time burden, it should be an option to them.
You want to talk about the right to choose to live, how about their right to choose not to support you?
Wikipedia disagrees with you
In the Netherlands, euthanasia remains technically illegal for patients under the age of 12.
Technically illegal, yes, but “[p]rosecutors will refrain from pressing charges if this Groningen Protocol is followed.” So Wikipedia doesn’t really disagree. We at DRN refuse to use apologetics in regard to eugenic practices.