We went to a Williams Syndrome Conference over the weekend, and we had a fantastic time. (Thank you to everyone who organized it and to all of the speakers!) It’s bizarre how, after 2 years of completely immersing myself in “all that is WS,” I still have so much more to learn. I’ve certainly come a long way from the confused mom who received a diagnosis that she’d never heard of before, but there’s still a long way to go. We haven’t even had our first IEP meeting with the school system yet, and I’ve heard those can be a doozy!
My favorite session at the Conference was a panel of 4 adults (1 man + 3 women) who have Williams syndrome. I was so moved by what they had to say and, also, by how much they’re accomplishing in their lives. In the beginning, I worried that having WS would be so limiting for Emmy, but there are adults who live completely independently, hold down paying jobs that they enjoy, and drive cars. I think there are a lot of misconceptions about WS and its “limitations,” and it was inspiring to hear these adults focus on their many abilities, not their disability.
And then I heard something that floored me — the best line of poetry EVER.
One of the women was talking about her best friend of 14 years, who is “typical.”
What I learned early on is that people in the special needs community (and educators, therapists, etc.) don’t use the word “normal” to describe someone who doesn’t have special needs. Because: (1) The opposite of normal is “abnormal,” and it’s cruel to call someone “abnormal.” (2) What is normal anyway??? I mean, really. Can we even define that word? I certainly don’t think I’m normal…
If you use the word “typical” instead of “normal,” I promise that you will impress all your friends. 🙂
So this woman, who I immediately adored, was talking about her typical friend. And she said: “She sees me as she sees herself.”
I swear that is the most amazing line of poetry I’ve ever heard: “She sees me as she sees herself.”
And it got me thinking: What if we were to see other people as we see ourselves?
The dad rooting for his son even though he’s on the other team…
The cashier who is taking her time even though you want to get home…
The person who is fishing for his MetroCard before getting in the subway turnstile even though he’s holding up the whole line…
The person with special needs who wants to talk to you…
What if we see others as we see ourselves?
What if we were to approach each day looking at strangers and thinking: You know, we’re a lot more alike than we are different…
I’ll give it a go. Why not?
And I’ll close by saying that I am so touched by people who truly befriend those with special needs. It’s easy to judge someone who is different. It’s much more genuine and beautiful and human to connect with that person and find the ways in which you are more alike, than different.
I’m gonna give it a go, too!
I loved hearing about your experience at the Williams Syndrome Conference. Thanks so much for sharing. We know that when faced with barriers, challenges, or even new experiences, individuals may have to speak up to have their voices and needs heard. I’m wondering if you’ve heard of our new resource called the Advocacy ATLAS (Accessible Tools for Leadership and Advocacy Success) http://www.geneticalliance.org/advocacy-atlas. Genetic Alliance created this online site with Family Voices and Parent to Parent USA with the aim of empowering individuals with special needs and their families to access and advocate for care, services, and supports. Please share feedback with us about what other resources we should include! Thanks again, hearing stories from parents and advocates reminds us how important advocacy and leadership are!
Thanks, Sharon! I haven’t heard of that site but will certainly check it out!