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.