Saturday, March 10, 2012

Advocacy Hurts

I have begun making an effort again to speak up when I read things about Down syndrome that are untrue... stereotypical cliches that get passed around to fill article space. But after just a few days back at it, I remember that it really hurts to engage with strangers who think the people I love are worthless.


For the longest time I had to stop reading the articles and posts that appeared in my “Down syndrome” Google alert. Eventually I just stopped the feed because reading what others nonchalantly write about people with Down syndrome is just so painful.


To believe them would be to believe that my children won’t grow up to be adults. They don’t have potential. They may end up in group homes, in which case it would have been more humane to abort them before they were born. My children are suffering, and they are burdens on me and my husband, my other children, my extended family, my community, and my country.


When I read things like that scattered here, there, and everywhere, I can’t help but want to say, “No, no that isn’t right. It isn’t that way. You’re being unfair and creating negative perceptions that have effects on people.”


But if I open my mouth, I am told to STFU. If I don’t shut the F up, I am mocked and put in my place, and invariably someone will point out that,

“not everyone with Downs grows to be an adult and is successful, it can be very dibilitating.”

(Yeah, because some people with “Downs” grow up to be, I don’t know, aliens maybe?)


And you can’t argue with that. I know you can’t because I have a child with Down syndrome who might not ever hold a job, fall in love, or leave home (until I die and she has to be put in a group home). I could say that it isn’t the Ds that makes her this way, but you could say she would not have contracted meningitis if not for having a heart defect related to her Ds that kept her in the NICU and started the downward spiral.


But I love her.

Did you catch that? She may be low-functioning, and difficult at times, but I love her. She may never learn to read and write. She may never stop throwing things. She may never grow up to be like anybody else, but I love her.


“It might be alright for you, but not everybody feels that way. Not everybody was cut out for that life.”

Really? I cannot imagine the woman who could have birthed her and raised her thus far who would not love her. It is for everybody, love that is.



Nykki said...

I love you. Thank you for writing what needs to be said. My boys thank you too.

John Ehle said...

Thanks for posting this! (Heidi's husband)

Anna said...

this is so true. Even tho I wasnt her bio mother. I adore my little one. She is our daughter, her life has value.

Anonymous said...

Tears. My heart cries for all of these children and adults with Ds who are discounted and devalued.

Lisa said...

My heart is breaking, too. It is an imperfect world that deems a child "too imperfect to live" or "too imperfect to love". You're right, love is for everybody. I know just what you're saying. (All of the pictures in this post are precious. That last words to describe how it makes me is just too beautiful.)

Tara said...

That is one part of advocacy that I hate. The part when I find myself defending life with Ds by stating the "high functioning" possibilities when, in reality, life with Ds is worthy because it's LIFE!

DownTownDan said...

The never-ending battle of repeatedly reminding a disbelieving world that your child's life has real value is a heartbreaking burden to bear. But you do it with style and with heart, and that's something of which you can be proud. It should take a bit of the edge off, at least.

Linda said...

Beautiful post! It breaks my heart that some people don't think either of my girls are worthy.

Unknown said...

advocacy does hurt...i have never thought of it that way...but it does...and maybe this is why I shy away from it a bit...and when I do say something I get all jittery and second guessing myself...I love these pix amazing...i love the way you tell the story! smiles

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