Wednesday, October 9, 2013

Beyond Down Syndrome

It is there in her face for you to see before you even learn her name, or her favorite food. Before you find out that she loves jewelry and shoes and tights and dresses and little hollow plastic balls that double as fake boobs, you already know that she has Down syndrome. The shape of her beautiful blue eyes rats her out.

blueeyes

Every thought you have now about her is modified by that fact. Your brain does its fabulous work of classifying her based on what you know about it. What she does that fits your schema for Down syndrome will be tucked away under, “They are all so...” and the parts of her that crack the mold will become inspirational fodder stored under, “Aww, despite having Down syndrome, she ...”

Can you imagine having something about you that was so obvious, and so pervasive, that you were unable to develop an identity apart from it?

How can she develop her individual identity when no one can see her as a person, period? No one. Not even me sometimes. She is a person with Down syndrome. You see a person with Down syndrome. Every single thing she does is relative to Down syndrome.

I don’t want to raise awareness about Down syndrome.

I want to raise awareness about being human, about having a personal identity.

I want you to forget about Down syndrome.

I want you to look at her. I want you to see her.

seeme

Let her develop her identity separately from her chromosome count. Accept her as fully human.

16 comments:

Paulette said...

I call it facial profiling.

Samantha LaCosse said...

I LOVE your photography!!!

gps said...

Do you feel it as a woman, especially if you work in a male-dominated field?

Do you do this yourself when you see people of other ethnicities?

http://matir-asurim.blogspot.com/2013/10/31-4-21-sonnet.html

Jill Taylor said...

Yes. Agreed. Your daughter is absolutely beautiful.

TUC said...

@gps I did think about ethnicity when I was writing this because it is the only thing I can think of that probably comes close to what happens to people with Ds. I say "close" because I am assuming (possibly incorrectly) that there are places a person of a particular race can exist where those around him or her see them and not the characteristics of their heritage. As for at work, I did feel that a little bit in some places but since it was only at the office, it did not have a major effect on my identity. Both scenarios are good examples that people can think about to try to understand how a visibly disabled person struggles to be seen beyond the obvious.

Lorre Lyons said...

I know how you feel and what you mean. My son (almost three) also has down syndrome, which has put more attention on him than if he didn't. There's no way to get around people noticing or thinking about the down syndrome, not until they get to know our children like we do. Changes in perception won't come until they realize it's just a part of them, not there whole being. It's the same with any noticeable disability. My blog is all about him being just our son, with subtle (mostly) awareness to others about how he is more like others than not. www.adoseofjustice.com. It's done with humor.

laura said...

This really touches me. Thank you for writing it.

Uuganaa said...

Wow, what a great post and photos. I agree with you. That extra chromosome or the terminology, the label blinds us to see the real people. Beautifully put across. X

Michelle said...

So true! I remember when Kayla was a baby realizing that people would just look at her and would just KNOW. They would know she had Ds before they knew anything else about her.

Latonna Rodgers said...

Thank-you..I agree 100%.I along with my children all have extra chromosomes but my daughter's is recognizable for her almond shaped eyes and flat bridge.Yes she has Down Syndrome...so what...she is unique in her own way.Love doesn't count Chromosomes.We rock our designer genes and I want my daughter to be accepted as much as the rest of her family is.

val said...

I had a brother who had DS and I used to get into a bit of trouble standing up for DS people on buses etc. Sometimes that look when we see a DS person is one of hey, I know you, even if I do not know you personally. Always brings a smile to my face.

Jisun said...

This really rang true for me as well. That was one of the biggest things I felt when we found out, knowing that this would mark him for life. I cared more about the stigma from DS more than I ever thought about him being of a mixed ethnicity.

Anonymous said...

All I saw was a beautiful little girl, who more than likely is a show off, who knows how to wrap everyone around her little finger and is a loving daughter and a joy to all who meet her

Katie Wright said...

I was thinking the same. ... but not as a question

Katie Wright said...

Indeed :-)

Gina said...

You said so perfectly, what I would think all parents of kids with DS or any visible disability feel. Thank you for putting into words what I have felt for the past almost 9 years. Simple but perfect. Get to know my child, before you ''know'' my child.

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