Monday, August 18, 2008

Not Yet

On our last full day of our mini-vacation, we decided to take Mike and his son Joseph to the war museum here in Ottawa. We'd been there a few months before but only got about half way through. We thought it would be good for Joseph to see the museum - it's kid friendly, beautifully laid out and fascinating. Joe and I went to get the tickets and on buying them saw a poster for a special exhibit called, 'Deadly Medicine: Creating the master race" that has been borrowed from the United States Holocaust Memorial Museum.

Needless to say I wanted to go. The special exhibit hall is right after entry so we all trooped in. Right away there were Nazi posters about the use of eugenics to cleanse the imperfect and unwanted from the population. There were chilling pictures of people with varying disabilities in hospitals and institutions where their doctors and caretakers conspired against them, their value and their lives. Those who knew better did what was worst.

I felt sickened.

Joseph looked confused, so I asked him what he knew about the Second World War. He knew, of course, about the Jewish Holocaust, but had no idea that others came first, others were used to test the machinery that would kill millions more. As I spoke to Joseph, I noticed other visitors to the exhibit hanging around as I explained the process to him. Told him about Hadamar in Germany. Told him about the destruction of people with disabilities. I know this stuff, I wanted him to know too.

Later, Joseph had wandered off and I said to Joe, "How many people will go through here and shake their head at what the Nazi's did and still think that it's ok to weed disability out in the womb." A woman glanced hard at me. I continued with Joe, "Like the weeding of Down Syndrome out of the gene pool." Her face grew almost rigid.

She brushed by me, bumping my chair hard. "It's not the same. It ISN'T," she said. Then she was gone. I calmed myself down. I think it is the same. Eugenics is eugenics. Elimination of a minority is the elmination of a minority.

I brushed all of this away, determined that Joseph would have a good time, that the visit would not be tainted with my needs. At one point we were under a recreation of a huge bomb crashing through a ceiling. We all looked up at it. It is quite frightening. Joseph said a few minutes later, "I could go a burger now." We knew he'd had enough of war and wanted to get back to the business of being a kid without care. I felt the same. I just wanted to get out of there.

We've decided to come back in a couple of months to see the exhibit alone. To take real time and go through the whole thing panel by panel.

And there is something I want to do.

There is a picture of a group of people with disabilities. One of the people in the picture has Down Syndrome. I'm afraid she might have heard the woman's voice, echoing down through time, through history. So I want to go back and say two things.

"It is the same."

"We've not lost yet. Not yet."


Heike Fabig said...

Yeah. It sure is the same!

Glee said...

It sure is the same. And it is about the worst sort of disability discrimination I know of.

That woman and many others are just fooling themselves to believe anything different.

Try aborting girl babies or black babies purely on the basis of their gender or colour and watch the shit hit the fan!!

It's 8.02 pm here in Australia.


Cynthia said...

It is the same. I know that most people know about the Jewish people, but few seem to realize what happened before. When it is acceptable to "weed out" on any criterion, the rules can loosen and it can eventually include anyone. It did. It has.
It is.
This part of our history has been "conveniently forgotten", I think, by many people. I'm glad you wrote about this. With the Tropic Thunder issue, I kept waiting for someone to bring this up. I did write a few places about it. What a society accepts (humiliation and elimination of a certain group) can escalate further. We are already at 90-95% elimination upon prenatal diagnosis. Globally. My son escaped that, although the pressure was there, the expectation that I would "choose" to end his life was there. The idea that he is the exception, one of the few that made it, really hurts.

It is the same.

Anonymous said...

You're so right! I visited the Holocaust Museum in Washington, DC and there was an exhibit on people with disablities and it sickened me.

People like that woman have a lot to learn...

FAB said...


Jessica said...

Darn it, Dave! I was just on my way out the door and thought I'd check a few things online quickly. Now you have me in tears!

Anonymous said...

I shudder to think if my daghter had ended up in a different womb what might have happened to her. When I was told to put her away and I had pressure to do so from her idiot father and his whole family I knew that she and I were going to walk this path together without them. And we have done pretty damn well if I say so myself. I have had friends tell me what a wonderful mother I have been for keeping her and raising her the way I have. It always surprises me when I hear that. From my viewpoint I have done what was there to be done. I ache for those children who were put away or who were tortured by evil men without souls as in Nazi Germany. Our history has been sanitized and it is up to us to hold the ugly and dirty truth up to the light. By understanding and being committed to telling the truth we can perhaps prevent this from happening again. Even as I wrote that last line I was thinking, IT IS STILL HAPPENING. All over the world in diverse places children are still tortured. Little girls suffer female castration. Women are killed by their families for "bringing dishonor" to their families. In every dark little corner of the world evil people conspire to murder the souls of children and when I think of it all I feel overwhelmed. Thank you for this blog post. The truth must be told but it is heavy. Not so heavy however as the closing off of our minds to the truth.

rickismom said...

Last year in Ricki's geology/government class, they studied Europe. Not surprisingly, as I live in Israel, a brief mention of the holocaust was made. Now Ricki had heard here and there about the holocaust and the killing of Jews ... kids hear about this here and there.(This is not surprizing in a country were a sizable portion of the population of the population are decendants of survivors.) I don't think, however, that she had ever really grasped it. (Nor had I really explained it, figuring that she was too young.) However, now that she was 13 I decided differently. I explained.I also told Ricki that these evil people killed not only Jews, but also all the babies and people with Down sundrome (but in a way that she shouldn't get scared.) The look of disbelief on her face ...her sudden realization that there are evil people in the world.
Slowly I have been teaching her that not everyone can be trusted, But this was a whole new level. It's very hard to believe that other people want you dead. But she needs to know. How sad.

Anonymous said...

I don't think I've ever commented here before, though I've been reading a while... but I thought, well I should this time.

Gracie1956 said "tortured by evil men without souls as in Nazi Germany". But almost no one involved in any atrocity perpetrated by human beings is either an evil man or without a soul. If we think of these people as evil, we think of them as apart from us and lose the most important thing to learn from these things: that we ALL have to guard against atrocities done in our name or unknowingly by us. This is a lesson we've failed to learn, here in the U.S. at least...

I am one of those they would have killed for the sake of eugenics, and it's an eerie feeling to grow up with, let me tell you.

But they were still people, just like us, most of them no more evil than anyone else in the world. It's not to say there were not some evil people involved, but they were not most of the people on the front lines, so to speak. We know ordinary people in the right circumstances can act in monstrous ways, and we can't afford to let ourselves off the hook by saying terrible things are only done by evil men without souls.

I think it is a very important point... It contributes to the thought some people have, that is so hard to argue, that: only evil/bad people would do that, and I am not evil/bad, so I could not possibly be doing that! Be it discrimination, abuse, or any other thing. But we're all just human.

Sorry to go on about it - but it is a point I feel very strongly about.

Gaina said...

Comparing a woman who has to make very difficult and personal decision to a Nazi, is beyond offensive to me. In fact it makes me feel the way you feel about the R-Word.

Some people simply cannot cope with a physically or mentally handicapped child, for many complex reasons and it's not my place or anyone else's to pass judgement on them.

If you're adept at caring for a child with a severe disability then good for you, that's your personal choice, but comparing the women who are not born with your 'gift' to nazis is just unforgivable - just as unforgivable as it would be for someone to castigate you for bringing a physically or mentally handicapped child into the world.

I would certainly hate to live in a society where women were forced to end a pregnancy because of disability, and I'd fight as hard for your right to make your choice as I do for mine.

I hope I never live in a world where a perfect stranger has more control over my body than I do.

Abortion is a very touchy subject and I'm really not interested in getting into a debate with anyone about this, so I'm not opting for email follow-up comments. I just felt I needed to put the other side of the issue for the sake of balance in humanity.

Myself and women like me are neither demons nor nazis. We're just human beings who make a different choice to some of you.

Anonymous said...

Amen Dave! Yes, this one had me in tears as well. And although I am one who believes we all have our own choices in life to make and live with, abortion also is something that would never be for me. I could have done that with my daughter who had Down syndrome and I did not, I could not have - I did not even want genetic testing because of that... Although I did end up having the testing done and it was a good thing because had I not my daughter may not have been watch so closely and I know it saved her life. I couldn't agree with you
more - it is definitely the same to me! I have tried to counsel many women who were going to abort because of T21 - some I won, some I lost. My whole point is though not one person I know of who chose their child with Down syndrome would have ever sent them back (even if they thought about it prior)....

Thanks Dave!


FridaWrites said...

It is the same. I chose not to have the AFP or amnio--I would have tested positive on the AFP the second time around because of the placenta size. I know others who have the AFP/amnio who don't realize that the only benefit is to make a decision about selective abortion but who wouldn't abort, so that's wasting valuable insurance (or govt. monies) that could be used for other needed healthcare.

Women are far more likely to lose a perfectly healthy baby because of the risks of amnio than to have a child who'd disabled. I am pro-choice, but a child's disability would generally not factor into any (entirely hypothetical) such decision for me. However, if I were going to have a baby who would die within a few hours or days (OI type IV, for example), I'm not sure--I'd not feel right about creating that death on my own. I'd probably do genetic testing in advance of a pregnancy if I knew of a family history because to carry a pregnancy to term that will end in very early death would be difficult. Very severe defects where the baby will not live can be detected by sonogram for a lot less money and a lot less risk than amnio.

Gaina, to gently challenge your statements, I think we don't have the support networks in place where many people can imagine themselves raising a child with a disability. What if people knew they could find child care or good schools or have family and other support networks to take care of that child after they can't take care of that child or pass away? And adequate insurance plus time from work or flextime to help with medical appointments? In addition, what if we lived in a society in which those students experience less stigma than in the past (ideally, no stigma)? I do know that it's been more difficult for me to raise a child with autism because of my own physical disability.

Years ago I taught a student with Down's syndrome in a college class. She did very well--actually, better than a lot of the other students. We can't assume. Her mother's love and caring for her helped her achieve her goals (an associate's degree so she could work with children). I also know a single dad who was told his child would never walk or talk--his child is doing fine and definitely walking and talking.

All children are challenging to raise, have individual issues, and need significant amounts of our time.

stevethehydra said...

If you're not willing to raise a disabled child, then you shouldn't be having ANY child.

There are many, many disabilities that are not detectable by any genetic test, and any child born "normal" can become disabled at any stage of childhood through illness or injury.

I am not only pro-choice but pro-abortion, to the extent that i think that (at least in rich Western countries), if you have an unintended pregnancy then abortion is the most ethical choice to take.

But, if you (supposedly) WANT a child, yet would still not accept any child with genes that would make him/her otherwise than your definition of "perfect", then that is both incredibly stupid (because that child could become disabled at any time), and morally grotesque to an extent that "eugenics" is the only word to accurately describe it.

This goes especially for those who would normally hold a hardline anti-abortion position, yet suddenly change that position when a disabled fetus is concerned. Thinking killing a non-disabled fetus is "murder", but killing a disabled fetus at a later stage of pregnancy (as in current UK law, where there is a limit of 24 weeks for aborting non-disabled fetuses, but a disabled fetus can legally be aborted right up until labour starts) isn't? Now THAT is fascism.

All 4 My Gals said...

It IS the same, it's just in different packaging. When I had my amnio, Tarenne reached up to grab the needle. She NOTICED the strange object in HER space. She was a female, she had a heart, a brain, nerve endings. I was offered an abortion. I could not fathom even the thought. MY CHILD, MY DAUGHTER, even so in the womb.

Had I killed her I would have missed out on the inexplicable joy she brings to me and those around her. I would have punished my other children, for they wouldn't have this sister who helps them without request, who loves them even when she's mad. None of us would have learned the vast and valued lessons she has taught us. We would be less than we are without her.

Killing her in utero maybe would have been easier than killing was during the Holocaust because the Nazi's had to look upon the faces of those whose lives they were taking.

But killing is killing. Just because I could not yet see her face doesn't mean it was not there. She reached up to grab the needle, she noticed, she thought, she lived!

Anonymous said...

It is the same. The only reason the German's didn't go in for abortion is that they couldn't scan the pregnancies in the womb!

There is a woman on a forum I visit who at her 20 week scan was told her child had a cleft lip and she has been put under some pressure to have abortion. There wouldn't have been a question in Nazi Germany, she wouldn't have had that choice.


Ettina said...

If you're not willing to look after a disabled kid, don't kill them! Just put them up for adoption - there are plenty of people less prejudiced than you.
Besides, the idea that it takes some kind of saint to raise a disabled child is a myth. Many disabled kids are harder to raise than most kids, but not by *that* much. And it's my impression that the parents who have the hardest time coping with a disabled child often don't really have a difficult child - it's just that their lives were so perfect before that they can't stand something not going the way they wanted. (of course, there are exceptions, such as the parents of a severely self-injurious child.)

Anonymous said...

Yes-it is the same. Your post has me in tears too. Thanks Dave for inspiring me to keep on fighting for the rights of everyone. When my local DS support group is debating small things like our wording of our brochures and who is to do what when….your blog always reminds me why we even have a DS group.
Btw- has anyone read “War Against the Weak, Eugenics and America’s Campaign to Create a Master Race” by Edwin Black? It is a surprising look at things that happened not so long ago in the US.

Anonymous said...

Not to debate or to defend but to clarify my statement I offer this...when I referred to the Nazi's I was talking about the experiments done on disabled children although some children who were tortured were twins and not disabled. I never referred to abortion but used the words "put away" in reference to the institutions so many intellectually challenged children were warehoused in to rot away. I was told to "put away" my child when she was six months old not pre-natally. I also must say this...I do not have a "gift" for raising a disabled child. It was definitly on the job training. I was angry for a long time and felt sorry for myself for an even longer time when she was diagnosed. If anything she taught me how to raise her. I was pretty stupid and young then. About the only thing I had going for me was that I loved her unconditionally but even that I had to learn. Before that I was very self centered. Please don't take this second post as a challenge. It isn't, it is meant to be loving and I am so sorry to have offended anyone. Thanks for a great post Dave.

andrea said...

There is a difference between deciding whether you want to continue a pregnancy, and deciding that ENTIRE CATEGORIES of people should not exist.

About a year ago, I discovered that the hospital I went to as a child was one that (at that time) sterilised disabled people. Had my particular issues been more "severe" (for want of a better word) my children would not have existed.

That is a freaking scary thought!


Tamara said...

I'm with you, Dave. It is the same. Thanks for this. Makes me not want to go to a holocaust exhibit, but makes me feel like I need to -

I do think there are evil people in this world - then tons of us who follow them like blind sheep. One of my favorite novels was It Can't Happen Here by Sinclair Lewis. It can happen anywhere.

Unknown said...

the Holocaust museum in DC is very moving. It will touch your very soul. I did not cry, at first. I knew to expect the pictures of the trains, the pile of shoes, the glasses. I watch War of the World on PBS as a child. I had seen the camps and the ovens. I had braced myself. Then I got to the room which tells about the atrocities waged against the disabled. I looked at the pictures and read the stories. Then I ran off. I made it to the bridge with the family pictures hanging on each side of it and I lost it. Once you visit this museum, you leave changed. You do realize that today's push to abort "imperfect" babies is exactly the same. We're even to the point of aborting because it's a girl or the baby doesn't have the right eye color. We can put eggs and sperm into a dish and pick out the embryo we want - presto! Designer baby! (I'm talking about those who do this to choose their perfect baby, not those who actually need IVF or other intervention to get pregnant). Brad and Angelina couldn't even be bothered with pro-creation the good old fashioned way... too much time and trouble.

The world said it would never turn a blind eye to another Holocaust, yet another baby is being aborted because it had an extra chromosome, because it would be too much bother, because it wasn't "perfect" How is that NOT the same???

Amanda said...

This was a very moving post. I remember going to Europe when I was 16, and watching "Schlinder's List" right before going. I was a history buff even as a child, so I had a thirst for knowledge and understanding of why one group of human beings could do something like that to another group.
There are many things I want to share with my children, and a visit to the Holocaust Museum is one of them.

To Gaina: Having a child is full of the unknown. It's like careening down a windy road in a speed racer with a blindfold on. You can't foresee what's to come, you can only do your best to prepare yourself for whatever happens. According to you, some people just "cannot cope" with a special needs child. They want the vanilla life, the "no surprises", I just want to skate through with no bumps on the road cause that would cause too much hassle-life. No one is BORN with the innate ability to handle a kid with special needs, you learn, you grow, you thrive.
There are certain things you can choose in your life: career, school, vacations: being a parent is a GIFT not a right. A gift from the universe/God/whatever you believe, that says "I am entrusting this little life to you, because I trust that you will love it more than you love yourself, regardless of what demands it will make on you."
If people want predictability, maybe they should stick to pets.