I'm sitting at Starbucks (that's a worldwide chain of coffee shops), checking email, making phone calls, "sipping my triple tall non-fat latte," and thinking about the fact that people with Down Syndrome make me uncomfortable.
My fear is that if I make eye-contact with a Down Syndrome person they will talk to me, I won't understand them, and then I'll feel embarrassed. (Yes Virginia, this phobia is "all about me").
So this particular Starbucks employs a young woman who has Down Syndrome. (I was going say "is afflicted" or "is a victim" of Down Syndrome, but my lack of knowledge of this syndrome leaves me wondering if "afflicted" or "victim" are appropriate descriptions).
The young woman's job is to dust, sweep the floor, clean the display case, bus the tables, and water the plants. She goes about her business with extreme diligence and a broad smile.
So I was sitting there working on a quote for a customer, when my fear became a reality. The relative quiet of the establishment was broken with the words, "So how are you doing today?" I glanced up to see the beaming young woman looking right at me. With a small amount of anxiety I replied, "I'm doing great. How are you?"
It seems impossible but her smile got even bigger. "I'm great too but thank God it's Friday." With that she waved and walked off to continue dusting the Tazo Tea display.
"Thank God it's Friday?" Did she really just say "Thank God it's Friday?" Does that mean that there's a discernible difference between this day and any other day in her life? That perhaps a Saturday spent with family or friends, or by herself, is an appealing alternative to working her shift at Starbucks?
Does this mean that she doesn't just meander her way through the day oblivious to what's going on around her? She has good days and bad days... not just "days?"
I am beyond guilty of not understanding the nuances of life that a person with Down Syndrome experiences. It never occurred to me that she would have a thought like "Thank God it's Friday." I assumed that every day was the same for her and others with Down Syndrome. In my ignorant mind they seem blissfully disconnected from the challenges of day-to-day life.
I realized at that moment that I know nothing about Down Syndrome and I let my fear and assumptions dictate how I would interact with people like her.
She walked back to me, carrying a tray of Dixie Cups. This time I noticed her name tag: Stephanie.
"Would you like to try a Caramel Apple Spice?"
"Sure." She stood, waiting for me to taste the drink. I did. I didn't like it.
"How is it," she asked?
Up until about five minutes ago I would have avoided telling her the truth, fearful that I might hurt her feelings or confuse her.
"Actually Stephanie, it's too sweet for me."
"Yeah, too sweet. I don't like them either." She strolled over to the next customer. "Would you like to try a Caramel Apple Spice?" She points at me. "He thinks they're too sweet."
Stephanie walked back to me with a look of slight embarrassment. "My name isn't Stephanie. It's Amber. I left my apron home and had to borrow Stephanie's."
I'm glad that I met Amber. Maybe now I will ignore preconceived ideas that are based on nothing other than vague, uninformed impressions, and realize that the Ambers of the world, just like me, can't wait until the weekend arrives.
Or maybe I'll just continue to meander through the day, oblivious to what's going on around me. I have a lot more practice doing that.
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rhonda talbot
Deborah Ludwig
Cenk Uygur
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Ted Frier
Salon.com
Comments
Sincerely,
Trey Shaver
Editor, Down Syndrome Today (www.downsyndrometoday.com)
Wow, this is something I can definitely relate to. When my family bought a new house in Utica, NY decades ago, when we went to look at it, there was a 35-year-old man with Down syndrome sitting on the living room floor making a huge structure out of building blocks, with bridges towers, very intricate. In the attic there was a huge train town that I imagine had been built for him. The only other developmentally delayed person I had known at that time was a man in our old town who would march in parades yelling nonsense about Army-Navy football games. He was huge with large gangly limbs and big blue eyes. He lived alone with his mother in town. This to me was mental retardation and it always made me a little afraid. Now I know a girl who rides the bus and she doesn't have Down syndrome, but is definitely developmentally delayed. She is so funny and sweet though. We talk every time I see her. She told me one day that it was her mother's birthday and how she had died a year ago. We talked about that for a while, a truly meaningful conversation. Another time I got on the bus with my son, she greeted me and said "He's got a date tonight, it's his birthday," referring to the bus driver. The bus driver laughed and said I just mentioned it to her and now the whole bus knows. We joked about how it would be on the internet or the local news, and had a lot of fun. She explained to me once about the new Panera Cares which just started in Hollywood. She has a great sense of humor, and though I feel I know her, and always speak to her--about all kinds of things, I don't think I remember her name.
When I think of how things used to be for people like Amber and the man who used to live in my old house, I'm very glad we live when we do, even though it's not exactly the best of times. I should have written my own post, I guess, Sorry.
Your remarks suggested that you felt, whether or not you acknowledge it is, that because she visibly has a syndrome associated with mental retardation, she has nothing in common with you. Perhaps not even common humanity.
Imagine how she feels every time some ignorant jerk treats her as unworthy of the common courtesy due to a fellow human being because she looks different.
Do you really need to be told that even the handicapped are people too? What does that say about you? I hope you ask yourself that question.
Thanks all!
Roger I thought this was great. You captured perfectly the fear and the surprise so many feel around those who are different.
A beautiful slice of daily life to go with the coffee. Thank you.
I hope that more people take the time to realize that those with Down syndrome really are just like the rest of the world. They have good days and bad days, as we all do. I appreciate your honesty.
Maybe next time you see someone with Down syndrome you'll be the first to make eye contact, smile, and say hi!
It's not about everyone being perfect all the time. Because we're not. None of us are. It's about learning when there are lessons to be had. I feel like you did that here and you've presented it in a very honest and heartfelt way that I can appreciate very much. For that, I thank you.
They just don't know.
They don't know that people who have Down syndrome go home to loving families/friends/pets. They have social activities, travel and have hobbies. They love to dance, play video games...and yes, have bad days.
They get sick. They have dentist appointments. They have to deal with mean, ignorant, bullying people who want to tease and taunt.
BUT---you took the time to actually get out of yourself and your insecurity to look beyond the face of Down syndrome...and see that Amber is just like you and me.
To every parent who has a child/adult with Down syndrome in our lives---you have made our day. :-)
I am absolutly sure that I have an "Amber" at home and that she will be up for great projects in the future.
The surprise you faced today, I do face everyday at home.
(and I did have to register on this website in order to comment your article, so it means that I it was really great)
If you have time, I'd love for you to take a peek at a montage I put together last month...our kids are pretty amazing.
http://babynumber10.blogspot.com/2011/01/worthy-of-life.html
Thank you for being honest here...because I felt the same way before I had Lily:)
Such a refreshing story as it shows others that people with DS aren't all that different and it also gives hope to parents of these individuals. I want my son to have a job, to carry on a conversation and to just be accepted. So thank you!
http://wwwourunexpectedjourney.blogspot.com
Adrienne
Thank you for being careful with your wording about Down syndrome.I wish more of the regular media were so careful.My daughter is in no way afflicted or the victim of Down syndrome.
I blog about my daughter at http://www.cheryl-rubyslife.blogspot.com/
Just thought I'd add to the positive comments you have received. No parent who has a child with a disability would be anything other than thrilled to read your post. We can all learn from those around us, some of us are lucky enough to learn from those that others dismiss.
Just thought I'd add that your article has made it to Australia and yes I also have a daughter with DS she is 6.
I have been blessed to meet many families of children with Ds, many people who have Ds and many more than have no idea what to think of Ds. Your experience with Amber is amazing and brought me to tears.
Thank you for not being afraid and for opening your heart and mind to the idea that people with Ds are more alike us 'typical' folks than they are different. Now that you know your life will surely be far more enriched.
Have a wonderful day! Please know that I am going to repost the link to this for everyone to see- it is a beautiful piece and it should be shared.
Sincerely, Meghan Wilkinson proud mother to Casey and Connor.
Jen
http://lovingpeanut.blogspot.com
Thank you, Roger, for being willing to risk a part of yourself and in so doing, realizing a truth and then sharing that truth with others--that's how we will break down the phobias and make the world a better place for those with DS. Thank you!
Thank you, Roger, for being willing to risk a part of yourself and in so doing, realizing a truth and then sharing that truth with others--that's how we will break down the phobias and make the world a better place for those with DS. Thank you!
For me, the light bulb turned on in the late 80's, back during the cold war, when I had an opportunity to go behind the Iron Curtain. Technically, the people in whose home I stayed were my "enemy," but I realized that Sting was right. The Russians really did love their children, too.
Our emotions are a universal language that we share with everyone on the planet. We're all glad it's Friday!
My niece has Down syndrome. The expression "more than the sum of their parts" applies to her in an unusual way. At 3, she cannot talk yet, but when I am with her, there's more love than the two of us can hold.
It takes an advanced soul to choose her circumstances. I bow before her.
Thank you for posting this. I put it on my Facebook page in honour of my wonderful niece Marie who has Downs. She is a recent high school graduate, a really good painter, waitresses in the summer at a tea salon and is apprenticing to be a baker's assistant. It was brave of you to say DS people make you nervous. And very brave to show how silly that notion is. How quickly in 2-3 sentences of conversation, myths and prejudices can be dispelled. We're all people, and we all thank god when it's Friday.
mf
I can understand the transformation your viewpoint went through. Before driving taxi in Santa Fe, I was cautious of people with similar ... situations ... as Amber. Part of the training I received was sensitivity awareness. It also helped that a regular taxi customer had Down's. He's the most positive, upbeat person I've met in my life. He was also the subject of a newspaper article when his employer (McDonald's) named him employee of the year.
-R-