The Use of Verbs

What would the world be like without Down syndrome? I don't know. What would the world like without the people who have Down syndrome living in it? How have they contributed to society? I can't say.

I can say how my life personally has been affected by people with Downs. Most of the people I know personally who have had Down syndrome and I have made friends. As with all friendships, some of these friendships came easily and others took a lot of work. Either way, through our friendships, I learned things like how to trust people who said they loved me, and I learned that's it's really okay to laugh and be silly sometimes. Something I really needed to learn.

I wonder why it matters. I wonder why it matters what life would be like without Down syndrome and what life would be like without people who have Down syndrome. I wonder why it matters what people with Down syndrome have contributed to society?

No one has ever looked at me, save perhaps my father in moments of frustration and myself in moments of despair, and pondered the question, "What does Julie contribute?" "What good does her 'kind' do?"

Yet, such questions come up when making a case for life. When deciding to terminate a pregnancy when tests show the child will have developmental disabilities or when deciding, as it is becoming legal here in the west, to euthanize an infant with a severe disability or illness. Those of us defending us these children and their right to life are quick to give our western answers which base their right to existence on what they can contribute to society. What they can 'do' and 'give'. These are action verbs, if I remember my 4th grade grammar.

Instead, though, I wonder if our arguments for the right to exist shouldn't be based on being verbs. If we shouldn't understand for ourselves first, before we 'preach' to others, that our right to exist, all of ours, is based on who we are. Or even that we are.

Peter Singer and other such 'ethicists', seem to be bypassing the argument of what one can contribute to society, anyway. They are attacking directly one's personhood. They are defining personhood based on whether or not one is aware of his existence and mortality.

So, they declare that infants, all infants, healthy or not, people with severe or profound cognitive disabilities, those in the advanced stages of Alzheimer's, etc., though perhaps human, aren't really a person. Therefore, if the human is not really a person, euthanasia is very much ethical.

Also, for parents and doctors who really care about children born or who will be born with severe disabilities or illness, they are not so much concerned with what the child can contribute but with the child's potential suffering. They have feelings of hopelessness, helplessness, despair, fear of the unknown, and guilt. In their grief over their child's potential suffering, parents can be swayed by the thought that the child will be better off if they let him/her die by the hand of their trusted doctor.

How do we help those parents make a choice for life? I'm asking because I don't know. While we passionately know that the child has a right to exist, how do we lovingly convey to parents that their child is better off alive and suffering than dead and at peace?

Is the child better off suffering than dead? Who are we to decide that the child must suffer? Yet, who are we to decide that death at the hands of doctors is the answer to suffering?

I think we should put down our protest signs, step out of the marching lines, with all due respect to the pro-life activists who have done much for the cause of life, and find a way to come along side suffering parents. Help them find hope because there is hope in the midst of suffering. Help them by enjoying and appreciating their child for who he/she is.

I think we should come along side those with disabilities and illness. It is through relationship with them that we will come to understand that most of their suffering does not come from their disability or illness. But rather their reception from the rest of society of prejudice, rejection, untold amounts of abuses, and the suspicion and judgment by some of us of their very existence.