Saturday, August 22, 2009

Step Three

For our first day of work we were in an old chapel that had been part of a military hospital. The building, still with strong military lines, is now an art gallery and various rooms can be let out for conferences and gatherings. I rolled into the chapel to get a sense of the room. Outside was the din of 110 people with Down Syndrome from around the world, all finishing lunch and chatting with friends.

I had a few minutes quiet and given the quiet of the chapel and the atmosphere created by stained glass and high ceilings, I bowed my head and gave thanks that there still were 110 people with Down Syndrome in the world. My prayer was quickly interupted when the room began to fill. Everywhere I looked there were young people, very few elders, with disabilities. The organizers had kept it such that there were very few parents or paid carers in the room.

One of the goals was to hear what the group had to say. It was astonishing that they were so vocal about social intolerance and bigotry. They felt comfortable and loved and home but upon openning the door they felt the chill of discrimination and they entered into community with the expectation of social unkindness.

Yes, those 'happy little Down Syndrome people' have grown up. When getting off the plane here I mentioned that I was going to be working at the World Down Syndrome Conference and one of the women who overheard said, 'Oh, you are going to be surrounded by all smiles.' Besides wanting to puke I looked at the woman and saw that she had adopted one of those faces you get when you look at a lost puppy. Sheee-it that annoys me.

Well, let me tell you, these folks were not smiling when they talked about the names they were called, the stares they endured and the tricks played on them. One woman talked about being played the fool at school - and then being the subject of punishment because others were distracted by her difference. Another talked about having a growing fear of the kids in his neighbourhood as the teasing grows ever more threatening.

This may all depress you but it excites the hell out of me. We could talk about prejudice and discrimination, we could talk about bigots and bigotry, we could talk about individual and social action. These folks had no desire to live as victims. They had every intention of pursuing social change.

Awareness. They have it.

Pride. They are developing it.

Action - thank God I've lived to see the day - it's on it's way.


Beautiful Mess said...


How amazing and beautiful! I hate that people with disabilities are treated often. Not only out of anger, but out of ignorance too. It infuriates me to no end. The church sounds so beautiful, as does the conversation you had with your group.

I'm glad you're able to see the action coming. it is truly a beautiful thing.

Brad said...

You know I went 37 years without having anyone who understood what it was like growing up with scoliosis, or the issues I dealt with. I finally found an online support forum. In talking with them now its a huge weight off my shoulders, my wife cares, but she can never really understand.

I am so glad things have changed over the years and more support groups and programs are available. It really does make a difference.

ivanova said...

That's terrific. I hope those 110 people kick some ass!

Anonymous said...

As a mother of a 3 year old with Down syndrome I feel lucky that he was born in this day and age. I feel lucky that so many people before me fought for education and acceptance. Yes, there still is a ways to go but excellent ground work has been laid. Thank God I've lived to see the day, indeed.

In Due Time said...

The world can be a cruel place sometimes. I look forward to the day there is no such thing as discrimination.

Tamara said...

It's good to know they are speaking up. My "happy little down syndrome" son has all the feelings that any other human has, and he is definitely not always happy. One of the phrases in my son's IEP that just makes me crazy is "XX is a loving child" - well - sometimes and sometimes not. Every time I read it I want to puke too!!! The parental comments section will make everyone aware ...

OS November said...

Action, yes thankfully it is starting to happen all over now. Check out our OzSquad blog where we fight for awareness and acceptance of our children and loved ones. We would love to have you join us.

abby said...

These are my daughter's role models, and I feel fortunate that there are some very strong young voices in our community in Portland, OR.

You are right, it is incredibly inspiring! Thanks for being there to listen.

Kristin said...

I hope those people grab onto that desire for change and are able to spread that message far and wide.

Lauren said...

It is a sad thing that bigotry and racisim exist. I wish that more people cared about what struggles others were going through in their lives. People can be so cruel and thoughtless. If only they understood there was more to life than being selfish. I am so proud of the people in that group who are taking a stand to make life better for everyone else in their situation. Good for them!

Loving Servants said...

I came across your blog having read the post about the "toast" incident. At the time, I thought "This is the best blog post I've read in a very long time." Then, just a few minutes later, I came across "step three." I work as an assistant in a group home, and I'm dismayed by what seems to be a lack of lack of awareness, pride, and sense of ability that people with disabilities have (that I have met). Thank you for the encouragement that it is possible for people, of all abilities, to believe in themselves. I will continue on in this direction.