Our son has DS and we treat him normally even though he is quite severely handicapped. He is the subject of much friendly teasing by all the family, just as the rest of us are, we don't treat him with reverence just because he has a handicap.
People who have not come across people with DS might not know how to react and they can't be blamed for that. We are fortunate that our son has no behavioural problems, but some do, and it can be most off putting for bystanders watching DS people and others making spectacles of themselves.
We can't protect our kids from all spiteful remarks anymore than we can protect ourselves, and nor should we in my opinion.
I believe that children with Down syndrome have the right to the same diversity as mainstream children, whether it's an occasional mood, misbehavior or a dual diagnosis that causes them to be off-putting to bystanders.
I think we have a certain reverence for all our children, DS or not, small miracles that each of them seems to be, so obviously in some moments. Sometimes it's because the world is so new to them, other times because they seem to have such old souls.
In my family, we grow rascals; wonderful children who grow up to be good people, making assorted terrible mistakes along the way, sometimes repeating their own mistakes and other times repeating ours.
I think we should all be kinder to one another, and wish we could be kinder. There's a lot of character building and self knowledge that comes from having a richness of experience of both sorts but life is harder for most children than we should let it be.
When my church group went on retreat a few years ago to prepare for a yearlong diversity outreach, we had a group leader who set down some rules for us for the weekend. One of them was that there would be no sarcasm or name calling, no teasing at all.
One participant commented that he was known for using sarcasm all in good fun, and that no one had ever complained, plus he was not sure he could follow those rules even for one day, since it was a long time habit.
When the group was asked to respond, it turned out that several people felt hurt by things he has said in the past, but had not wanted to tell him.
At a Sunday school session a few weeks later, this man told us that he had apologized to everyone in his life, in case any of them had felt hurt by remarks that he thought were just good natured teasing. Everyone he spoke with had been hurt by things he said.
One young person told him that despite being told he would never amount to much, he had been successful at college and had made plans he never dreamed about when he was being subjected to sarcasm and teasing by the man who thought everyone could tell he was joking.
When I was young, my mother had strict rules about acceptable behavior, and plain good manners dictated that we would avoid using disrespectful language at home or out in the world.
I learned more on my own during the civil rights movement, when our neighborhood schools were integrated by just a few students who were different races and ethnicities, and walking down the street a few years later hearing hateful remarks shouted out of car windows.
I have seen friends flinch when they heard ethnic slurs and I have seen my own son flinch when he heard a certain word that I thought he was too young to have known was a derogatory reference to his developmental disability.
I wondered then if every person of color in a racist culture remembers the first time they heard and understood that language of hatefulness, and if they felt the same fierce combination of feelings as me when I saw that my son understood.
My mother taught me right from wrong, and offered the same lessons to every person in the neighborhood. I don't believe it's a waste of my time to pass along her rules and observations to anyone in mine.
Community leaders and politicians should know better than to use language that is insulting to people with disabilities and their families, and the 'extra chromosome' remarks are increasing in popularity among those who argue that they are advocates for social justice for everyone.
They should apologize. Advocacy groups who otherwise stand beside them fighting for civil rights and social justice must not allow their political friends to recreate that atmosphere of oppression, prejudice and discrimination that causes more challenges for our children than the disability.
Pam W
SE of Seattle
Affirmations - Expressing Affection and Acceptance
[url=BellaOnline ALERT: For anti-spam reasons, we restrict the number of URLs allowed in a given post. You have exceeded our maximum number of URLs.