By Sterling Lynk, Executive Director, Madison Area Down Syndrome Society
I am about to share with you something that should embarrass any leader of an organization that claims to represent, advocate for and support people with Down syndrome.
I have any aunt, on my dad’s side, with Down syndrome. My dad’s clan is huge and they are the models of warmth and caring. As an only child, my cousins are my brothers and sisters and I was blessed to spend many of my childhood summers with that family, even though they live a couple hours away. Since I was around that side of my family so often, I also spent a fair amount of time around my aunt. In fact, my aunt is my sole personal connection to someone with Down syndrome.
Obviously, there is nothing embarrassing about having a large loving family and their certainly is not anything embarrassing about an aunt who also happens to have Down syndrome. What is embarrassing is that I really don’t know my aunt at all despite essentially growing up with her. In fact, I know five things about my aunt. Here they are:
- Her name.
- She is my aunt.
- She has Down syndrome.
- She is non-verbal and does not live independently.
- She used to like playing basketball.
But, that is not the worst of it.
About 12 years ago, I spent New Year’s Eve and Day with that family and I stayed in the same house as my aunt. After a night of New Year’s Eve fun, I decided to watch some TV before heading to bed. About 2:00 am, my aunt woke up and sat next to me. She wanted something but I couldn’t figure out what but I am pretty sure it wasn’t an emergency. Then we just sat there. I did not try to talk with her and I was very uncomfortable. After a while, to my relief, she just went back to bed. Sitting in chair I sit in today, this is very embarrassing.
The truth is at that moment, and any other moment I had to get to know my aunt well, I was scared. Here is what I am pretty sure was going through my mind. “What should I say…What if I do something wrong…What if I say something wrong…What does she understand…How am I supposed to interact with her…?”
What was my problem? Ignorance.
This would not be the biggest deal if it was just me, but it is not. We live in a world that is ignorant about Down syndrome.
One my board members shared this story with me:
“When I was on vacation I had lunch with a friend from college. He was surprised to learn that I had daughter with Down syndrome. He also told me that he worked with a woman with Down syndrome but he never talked to her unless he had to. When I asked him why, he told me it was because he didn’t understand how he is supposed to talk to her and he is afraid that he would say or do something wrong. Until that day, he was afraid of people with Down syndrome.”
I think this story illustrates the number one challenge facing us leaders and advocates within the worldwide Down syndrome community. And, this is why I have taken it as a personal responsibility to help my community shed their dim view of Down syndrome, and instead see that individuals with Down syndrome are like other people in that they can, should, and are contributing meaningfully and significantly to their communities and the greater world.
Sometimes I am told I am overly optimistic about what people with Down syndrome are capable of. I disagree if by "overly optimistic" they mean that I should not expecting children with Down syndrome to grow up, be as independent as possible, do well in the world, and generally be a human being. For example, I received a call from a family looking for advice on how to "cure" with medication a child with Down syndrome grieving at the death of one of her parents. I thought grieving as a normal human reaction to death.
Am I being overly optimistic when I think it's normal for a forty-something self-advocate as he tried to enjoy his beer, while at the same time one of my colleagues was shocked that he could drink? Or, how about the time when a mom shared that she was concerned that her six year old with Down syndrome started to safely get her own snack? I think that is something to be celebrated.
I really believe that it is not enough to just challenge the vision of the communities we live in. We need to continue to challenge ourselves. So, am I being overly optimistic when I say that if organizations, advocates, self-advocates and other leaders that make up our movement are not developing people with Down syndrome to robustly and effectively advocate for themselves, and if we are radically shifting the understanding of the greater world around us, then we are probably not doing right stuff?
You tell me.
(Sterling Lynk is a guest contributor to DS Group Therapy, has a background in nonprofit leadership, and currently serves on the board of DSAIA. He has promised to contribute more in the future, especially regarding how this story has progressed.)