Sunday, January 15, 2012

What scares me most about my son's disability? You. Yes, YOU.

You're probably a lot like me. You consider yourself pretty smart, fairly thoughtful and accepting of all people.

I did, too.

That is, until I had a son with a brain injury. Suddenly, when it was MY SON that the word "retard" could refer to, its casual derogatory use was no longer acceptable. When it was MY SON that could be denied access to a mainstream education, when it was MY SON who might be scorned by his peers, when it was MY SON who might never find a fulfilling relationship, these things seemed intolerably unfair and absurdly narrow-minded.

You see, what I fear most about my son's disability isn't how he might need a wheelchair to get around. It isn't that he'll need adaptive devices to perform daily tasks you and I don't even think about. It isn't even that he'll need countless medical interventions, including but not limited to surgery.

It's you. It's the pre-Malachi me. It's everybody else who might look at him like a second-class citizen. It's the people who will stare at him. It's the people who will ignore him. It's the people who will ostracize him.

Today I found out that list of people includes highly educated doctors and medical professionals who presumably interact with disabled patients all the time.

This mother's little girl was denied a common and life-saving medical procedure. Her crime? Being born with Wolf-Hirschhorn syndrome, a genetic abnormality in which one of the symptoms is intellectual disabilities.

If you read the above link, you will learn that a doctor at the Children's Hospital of Philadelphia recommended against a kidney transplant SOLELY because of this girl's mental retardation. If he gets his way, she will die.

As if we parents of disabled children didn't have enough to worry about.



So what can YOU do? How can you help make the world a more tolerant and accepting place for my son and others with disabilities?

Well, that's the good news. You're doing it right now. Reading this blog or others, familiarizing yourself with the lives of people with disabilities, getting to know them as people instead of statistics or theoretical quasi-people will make it harder for you to stomach stories like the one above.

Whether it's race, creed, culture or any other thing that divides us, the most powerful weapon is knowledge: knowledge of the complexity of each individual on this planet, an understanding of his or her basic humanity and the acceptance that ALL people are owed love, respect and a place in society.


P.S. If you need a little pick-me-up after reading the link above, I highly recommend this video. The little girl is so cute and the message is powerful and beautifully rendered. 

21 comments:

  1. It turns out there's also a petition to sign to urge CHOP to give Amelia the transplant:

    http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive

    Please sign it.

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  2. "Knowledge of the complexity of each individual on this planet, an understanding of his or her basic humanity and the acceptance that ALL people are owed love, respect and a place in society." I love this. Love you Chi Chi, look forward to breaking down barriers with you.

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    1. Love you too Mare-bear.

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  3. What bothered me most was the fact that he said they wouldn't do it even if it was a family or friend who would donate - I get that they have to make criteria for receiving transplants off the nationwide donor registry, because otherwise they really are just playing G-d, deciding who lives and who dies. Not that I agree that intellectual disability should factor in - because that's saying "this person will not contribute anything useful to the world, thus the world won't suffer if they die", and honestly, how many people actually offer something to the world that will be remembered after they die? But fine, I get they need to make those rules.

    But to say that a person can't willingly say "I want to donate my kidney to this little girl", that's just wrong. What is it to them, if a donor wants to risk their health and life to help this little girl.

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    1. Totally. I don't understand at all what right they have to say they're not going to do it. If insurance will pay for it, if they think the patient has a good chance of surviving and if the kidney donor is willing, I just don't see any place for them to judge.

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  4. Yeah, but mainstream education sucks for everyone. Including alter abled folks.
    Him being who he is is a blessing in disguise for everyone's life he will touch.
    Kids and adults are mean. Period. His brother may get made fun of MORE than him. Just remember: fuck those people.

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    1. Maybe. I just hate that he might be denied the choice.

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  5. Well put as always, Shasta! And thank you for the link to the little girl's video - oh my gosh, she is the cutest!!! Made me smile.

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    1. Thanks, Marcy! I know, she's sooo cute!

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  6. I blogged about this yesterday too. As someone with a 'mentally retarded' child waiting for a kidney transplant I was horrified to read this story.
    http://thinkingofstartingablog.blogspot.com/2012/01/photo-day-day-15.html

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    1. Thanks for sharing that link. I'm so glad your doctors have never suggested anything like that!

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  7. I was completely shocked with I saw that. I have a 36 y/o brother with downs syndrome...I can't imagine someone telling me his life has no value.

    Brooke
    www.TheAnnessaFamily.com

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    1. Same here. If this doctor were telling me I had to let Malachi die I think I would flip my shit.

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  8. This is such a great follow up to our family dinner read of MLK's "Letters from a Birmingham Jail" Injustice, hate, in-equality have been around too long. I'm having my 12 year old read your post and make the connection. Thank-you. Heather

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    1. Wow, I'm deeply honored at being compared in some small way to MLK Jr. That guy is my hero! And what a cool family thing to do before MLK Jr Day.

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  9. Drunks can get new livers, and smokers can get new lungs, but a kid with a developmental disability has to die? FUCKING WRONG.

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    1. Right on, sister. Preach it.

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  10. I've been furious since reading this story. I'm so mad I can't think. I hope they make a new law forbidding this type of discrimination. Great post!

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    1. Yes! Along with "color, gender, sexual orientation, etc." they should add "cognitive ability" or something to that effect.

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  11. I only had to read the title of this post to know where you were going. You are so right!

    Korin - All I have to say is a big A-MEN!

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  12. Yet again - I totally totally understand EXACTLY what you are saying. I give some people the death glare and I am ADAMANT that nobody underestimate my kid or treat her differently. Her classmates are so accepting and wonderful that sometimes when we're out and about and someone isn't as amazing (usually it's with good intentions but potentially hurtful), I kind of get caught off guard. The story about Amelia made me sick to my stomach because yup, that could be MY kid or my friend's kid or...yeah. Anyway, I'm glad I found your blog - and I'm following you on Twitter now too. :) Also, while I'm here rambling, I also found your book list and have requested some from the library and wanted to suggest to you three books: Schuyler's Monster, My Baby Rides the Short Bus (which is a compilation), and Road Map to Holland. None are directly about CP, but all gave me things to think about, tools to use, and a feeling that I wasn't alone. Best!

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