For many in the Down syndrome community, it is a day of celebration and an opportunity to further awareness, education, and the achievements of individuals who deserve a valued spot in society.
As a parent of two daughters with Down syndrome, I think WORLD DOWN SYNDROME DAY is fantastic.
I really do.
But you know what? Sometimes, it’s not so fantastic.
My daughter Evangeline has a dual diagnosis of Down syndrome and autism (people with Down syndrome possess other types of dual diagnoses, too).
I do not believe in labeling anyone with a disability. I refuse to say that Evangeline is ‘low functioning.’ But I will say that so far at ten years old, she remains largely uncommunicative. She is nonverbal and struggles with attaining and growing skills like sign language and assistive technology. She is not toilet trained. She has sensory issues. Sometimes she is aggressive. Evangeline can’t tell us when she is sick, or scared, or bored (she can tell us when she is hungry through motion. That girl loves her sweets!).
For families with dual diagnoses, we’re unsure if WORLD DOWN SYNDROME DAY is for us.
At least I am. Both the Down syndrome community and society play into my fear. Kids and adults who ‘do more’ receive ‘more praise and attention.’ Oh, people do agree. ‘Of course, Evie is to be celebrated. Of course, individuals with dual diagnoses and their achievements should be shared with the world,’ they nod.
But… Does it really happen?
I am making a sweeping generalization, perhaps one that is unfair and hurtful. Forgive me. I’m sure there are instances where I am wrong.
But I just don’t see individuals like Evangeline pushed to the front of the crowd often. People who go to college, get married, or score television contracts are often in the spotlight.
Individuals who ‘do,’ get more attention.
I am guilty of pushing forth the ‘do,’ too.
Ugh, this hurts my heart. But the cliché rings true. ‘If one finger is pointed out, four are pointed back at you.’
Like I said, we have two daughters with Down syndrome. Our other daughter, Polly, is VERY communicative. Her strides appear greater. I focus on her too much. Is it because I think she is a better advocate? Do I think society will affirm value and shrug off fear of ‘being different’ because of the undeniable visibility of her growth?
Yes. This post is for me (and now I am crying). Ouch.
But ignoring individuals with ‘less functionality’ is a mistake.
Evangeline seems like she is not progressing BUT SHE IS. Is it slower than some? Yes.
Is it less important or noteworthy or celebratory or educational? No.
I’m sorry. You deserve love, attention, celebration, and your chance to reach your God given potential in a way that shines a light on the mystery and beauty and importance of YOU.
I (and your Papa, sisters, friends, and extended family) learn lessons and truths otherwise impossible if not for you. Your existence plunges us to a deeper level of existence.
Of course, you should have a spotlight.
Everyone with Down syndrome deserves ‘that spotlight.’
Friends, today is WORLD DOWN SYNDROME DAY.
This is our chance. My chance.
Let’s change the landscape of advocacy. Let’s improve the focus to include everyone affected by an extra chromosome on the 21st pair.
Let’s share with the world that people are loved, valued, and essential parts of our society not because of what they do, but simply because of who they are.
WORLD DOWN SYNDROME DAY is for everyone.
Gillian Marchenko is the author of two memoirs: Sun Shine Down, a book about Down syndrome, and Still Life, A Memoir of Living Fully with Depression. Connect with her on Facebook or at gillianmarchenko.com and an eBook chronicling eight years of blogging called Pulling To Stand, Glimpses of Parenting Two Children with Down syndrome on Different Paths.