He is thirty years old.
He had Down Syndrome.
He doesn't want to die.
He is telling me that he has to have a fairly serious operation and that he's really afraid. I understood, and told him so, operations are scary things. I've had my fair share and they always involve risk. So we chatted. Just chatted. He was please, I think, that I didn't brush his fear away, didn't try to tell him to NOT feel what he was feeling. As affirmation and validation often do, he opened up and talked to me about his fear.
He wasn't afraid of dying because he fears death.
He has faith and believes he will simply go to heaven.
He doesn't want to die for a different reason.
I know, as he tells me this, that at that precise moment, some family is being advised about the tragedy that a child with Down Syndrome will bring to their lives. Someone who knows about disability from a book, will take fearful questions and, in turn, make terrifying predictions. The list, the dreadful list of lies - the 'he will never ...' list, the 'she won't ever ...' list will be given followed by the 'best option for you ...' list - the list with only one choice will then be handed out.
I love my girlfriend, we are getting married next year.
I love my job, they treat me really nice at work.
I love my apartment, I like living independently.
He doesn't want to die because he hasn't had enough of the life he is living. He doesn't want to die because he wants more ... more time to enjoy being here and being him. He looks forward to the morrow, he anticipates the future, he expects that life will continue to be full of joys and sorrows and the wonderfully unexpected.
I love my mom and dad, I want them to be at my wedding.
I love my mom and dad, I want to surprise them at their anniversary.
I love my mom and dad, I want to show them how much I love them.
Denmark has stated that they will be Down Syndrome free by 2030 and the announcement was made as if they have achieved some kind of great accomplishment. The eradication of Down Syndrome is made possible by ignorance about Down Syndrome and about Disability. I am thinking of this as they young man is speaking to me. A young man full of life who wants more life. A young man who doesn't, as the geneticists may think, mourn his own birth.
Do you think I will have Down Syndrome in heaven? he asks me. I asked why he was asking the question and he said that he'd been told that there wasn't any disability in heaven. As I believe that in heaven the common language isn't Danish, I told him, I think we will all be who we are, really are, when we get to heaven.
Good, he said.
You read that right.
Good, he said.
15 comments:
Damn it, Denmark. I liked you.
I hope everything goes really well in his operation, and he is back on his feet for all his plans very soon.
My other thought was 'are there no Christians in Denmark any more?'
Alicia
Dear Dave:
This made my blood run cold. He sounds like a wonderful young man and I am glad you were there for him. But Denmark declaring they will be Down Syndrome free like that's a good thing? Who's next on their list? Eugenics is alive and well and kicking.
Colleen
Nice post, Dave! Thanks!
Dear Dave:
I have been surfing the net looking for more information about Denmark's eugenics policy and have really not found too much. I was hoping for some outraged protests - a petition or two, maybe even Amnesty International but nada. I am concerned for the future of the species. It is only a century ago that eugenics came into its own. Only almost 70 years since we saw it taken to its most extreme in Nazi Germany. And here we are doing it again. What will it take???
Colleen
Thank you Dave for sharing this conversation.
I checked on line about the Denmark story. e.g. http://www.str.org/blog/down-syndrome-births-in-denmark-may-disappear-by-2030#.U4933EZOVjo
I'm not sure that the situation in Denmark is worse than other first world countries, I think maybe there is more honesty about the predicted outcomes. Here in the uk screening for DS is offered for all pregnancies and my experience in a similar way to when they ask you 'would you like a plastic bag?' at the supermarket. In any country where there is a falling number of births of babies with DS, and particularly where there is also a falling number of births each year, a point in the future can be determined when it's predicted that the 'last' baby with DS will be born.
I'm not saying this to defend Denmark, but to point out that the problem is not somewhere else with them, it's right here with us.
Thanks for this post, Dave. I also looked online, after I shared it on FaceBook. Denmark's claim is not exactly "elimination of Down Syndrome", but rather, "elimination of Down Syndrome births". This is a separate issue, and one about which many people will have many disagreeing opinions, but it is NOT the same as what I had first thought: I had assumed that in order to "eliminate Down Syndrome" in 16 years, Denmark was also planning euthanasia.
From the Globe and Mail: Here’s a recent Danish headline: “Plans to make Denmark a Down syndrome-free perfect society.” The Danes want to promote aborting fetuses with Down syndrome, so their society will be free of such people around 2030. One bioethicist describes it as a “fantastic achievement.”
Sickening and scary.
Farkenell! Hideous!!
You know what hit me in this post was the marvelous way you ask questions. It really is a skill! You get more info, but the info THEY want to share. Example to us all!!
Good, indeed. I hope he gets plenty of life on earth first.
And bloody hell. Does that mean Danes with Down's are hidden away somewhere no-one can see them? Ugh.
I recently read a nightmare glimpse into the future we're heading into where disabilty is "eradicated". I'm not sure if sharing links is allowed but its well worth a read.
http://veronicafoale.com/for-the-good-of-the-country-is-a-lie-we-were-sold/
Please let society wake up before this becomes reality.
I am only just reading this post late, and am shocked and mourning this news. Those of us who write have to write about this; those who can speak must speak; those who pray, must pray. This is a travesty and genocide. Thank you for alerting us Dave.
Just thought I would let you know that VATTA (Voices at the Table, the national self-advocate group advising the Canadian Down Syndrome Society)gave a great presentation on prenatal testing (not screening, at they pointed out, because screening implies sorting OUT) at the recent CDSS National conference and they are putting together a video from it. It is almost finished. I will post the link (both teaser and full video) when it is done...if you would like!
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