Tuesday, March 19, 2013

Does Your Heart Go Out to Me? Then Act on It

Thursday 3/21 is World Down Syndrome Day. Last year I spent the day at the United Nations in NYC with hundreds of other advocates. We hoped that the Convention on the Rights of Persons with Disabilities would move forward, and that the United States would sign the disabilities treaty. Last December the US Senate chose not to ratify it.

Last October, during Down syndrome awareness month, we wrote posts for an awareness blog hop. You learned, once again, that our kids are as equal and amazing as your kids. But you already knew that because you have seen the videos, pictures, and news articles about people with Down syndrome being... well, being everyday people.

Then this month, Lexi’s "I’m Jealous of You" post got picked up by Mamapedia and Scarymommy and, after reading that post over a few times and digesting the comments, I realized that you don’t really understand that people with Down syndrome (and other neuro differences) are equal to you.

Lexi is an excellent blogger with a ton of great posts, but that post... that moment of personal venting and frustration is the one that got picked up and mainstreamed. Why? Because that post is viewed as the honest truth of mothers of children who are disabled. That post is what the greater public believes is true and thus, it is welcome on the grand stages. The deeper truth, the reasons behind what makes our lives a constant battle, the inequality of our children and how that frustrates and angers us (or makes some of us jealous) is not invited to speak up.

Here are just a few of the responses to the post,
"You are raising a child with an extra chromosome of LOVE. You are beautiful. You are stronger than the rest of us."
"Awww…you deserve a medal. All parents with special-needs kids deserve a medal. Thanks for a great post."
"My heart goes out to you and all the moms of special needs children. Those children are so lucky to have you. We are here for you! xo"

I feel like all of this awareness has opened the door for us but we still don’t have a seat at the counter. We are tirelessly sharing our stories, our pictures, our lives in the hopes that awareness will bring equality. But awareness on its own will not do that.

Awareness elicits various responses:

Affectionate pity — "She is so cute. He is an angel from above. Those kids are so special." (Those kids are different. Those kids are not fully human.)

Renewed gratitude for your own situation — "Wow, thanks for reminding me of how blessed I am" (And how not blessed you are, and how awful it must be to be you.)

Elevating the parents to a status of Other — "You are stronger. You are amazing. You are special." (You are different from me, You are separate from me.)

Share it, off the hook, self back-patting — "I reposted this on my wall so everyone can see that I think you are awesome and kids like yours are so special." (I accept you and pass you on. I’ve given you my support.)

While I believe that all of those responses are initially well intentioned, they do nothing to further the rights of people with disabilities to have full inclusion in society, proper medical care based on need and not congenital diagnosis, full protection by society, and to be seen and treated as a normal part of our culture.

Awareness must lead to action or it is futile.

So this time (and don’t feel like you have to wait for World Down Syndrome Day or Down Syndrome Awareness Month) I ask you to act on what you now know, what you are aware of. The next time you are in your child’s classroom, look around. Do you see any children with Down syndrome or other neuro or physical differences there? No? Ask the teacher, ask the principal, "Where are they? Why are they not with my kids?" Tell them that you believe in the equality of all people, and the rights of children like mine to be educated in regular classrooms alongside their peers (your children).


Anonymous said...

Your post rang so true. I am thinking of naming my blog for World Ds Day....
World Down Syndrome Day....Kick Butt!

I am a mom of 6 and 3 of my kids just happen to have DS, so what!

Lisa said...

"I feel like all of this awareness has opened the door for us but we still don’t have a seat at the counter. We are tirelessly sharing our stories, our pictures, our lives in the hopes that awareness will bring equality. But awareness on its own will not do that." YES. I love this!

I also don't think most people really sit back and analyze their thought process (and they have the best intentions) when "liking" and sharing our stories and pictures. You detail, though, very clearly some of the problematic responses that are elicited outside the disability community (and sometimes also from within). My hope would be that people stop thinking of individuals with "disabilities" (I don't like the term) as "other", as different. Ability is a continuum, and "disability" is part of the human condition. Human rights don't just apply to the majority groups.

Extranjera said...

We will make this happen. Today the NY Times, tomorrow the world (or next month, that works too, but we are in kind of a hurry, since I want my kid to be the last kid who'll have to fight this battle)
Great Post!

Psychojenic said...

Love it.

Lisa said...

Amen. And thank you. This is the message people need to get.

Gillian Marchenko said...


Melissa said...

Yesterday my kiddos were scrolling through a commercial on the dvr and all on his own one of them rewound and said 'Mom! Look there is a special needs kid in this clothing ad and they are not calling attention to it, he's just in there with the other kids." Yay. Just inclusion. NOT inclusion because of special needs, a political agenda or to feel good about yourself. Progress. Small, but real.

Unknown said...

I think this is a subject of love joy

Lizbeth said...

It seems to me the problems lies with the comments, and the perceived lack of understanding with the commenters, not necessarily with the original post itself. I loved Lexi's post and the fact it was picked up by other bloggers means the word is getting out. Baby steps, I guess.

Anonymous said...

You could make a writing career on Lexi's coattails telling her how she should feel. Nice job!

TUC said...


It is possible that I could, but then I would actually have to tell Lexi how to feel, and if your reading comprehension skills were better you would know I did not do that.


Jill said...

Just so I'm clear, your problem isn't with Lexi's post, because she's a good writer and supposedly a friend of yours, it's with the fact that it got picked up by a wider audience?

Eileen Shaklee said...

The lady doth protest to much. You claim not to be jealous but clearly you are. She got picked up by some big blogs and instead of supporting a fellow parent, you would rather ride her coattails to drive up your blog traffic.

TUC said...

Right, I have no issue with Lexi speaking her mind or what's on her heart. Lexi is a great writer and I mentioned my opinion on that in my post.

And please don't go all tall poppy/short poppy on me, ok? I used that post as an example of how a good writer like her is mainstreamed but still marginalized. I used it to show that the wider audience still does not understand equality.

TUC said...

Kiddo's Mom,

Nothing like totally missing the point of a post.

Jill said...

What does "tall poppy/short poppy" mean?

Anonymous said...

You suck at friendship.

Patty O. said...

I am all for awareness of special needs. However, I think your call for action is extremely short-sighted and limited. So, if all kids w/special needs are included in gen ed, then we have successfully spread awareness? I don't think so. I think it is infinitely more complicated than that. First off, inclusion is not the best option for some kids. My kid, for example, who has autism, hates gen ed because it is too noisy and chaotic, even in the most structured of classes. The fact that you apply a one size fits all solution to kids with special needs shows me that you need to learn more and become aware.

And the fact that you used Lexi, an absolutely terrific writer, and even better friend, who is sincere, non-judgmental and not at all preachy as an example of how far awareness really needs to come? Yeah, that's just jerky.

TUC said...



Read the part under "Zero sum prestige"

CJ said...

I find it ironic that your view of Lexi's post is interpreted as jealousy. How dare you have a differing opinion based on anything OTHER than a popularity contest??

I agree. I am so tired of people telling me my child is an angel, I am a saint and my family differs from any other.

As I said in my post on this exact topic, ALL children have needs and ALL parents are special.

Don't pity me. Don't pity my child. Don't treat us any differently. Just treat us equally.

I get tired of the "treat him/her the same, but celebrate his/her extra chromosome and put him/her on a pedistal!!"

I'm sick of the high school basketball stories, the prom queen stories and the look at what my special kid did that COUNTLESS kids did before him/her.

I applaud your post, I know if came from your heart and I fully agree with you!

CJ said...

I love you anonymous ass hats who can't even out their name on their words! It invalidated anything you have to say. Coward.

CJ said...

Just so your Negative Nancy readers are aware, your post was more about how Lexi's post was viewed by general society as opposed to what she wrote in her post!!

Anonymous said...

Hi. I'm the Anon that wrote the "coattail" comment. Sorry if I misjudged you.

I guess the abundance of the "you" pronoun in the first part confused me. Who is the "you" you are addressing? Lexi? Me, the reader? The general public? It was distracting enough that I stopped reading.

So I wondered, "Is she trying to find fault with Lexi, somehow, or one-up her?" It's not a difficult conclusion to come to when I looked back a couple of posts back and found "I'm NOT jealous of you", a response to none other than Lexi. That post seemed to indicate to her and your readers that you know the correct way to feel about the difficulties of raising special-needs children.

So then I come back to this post and it started to feel like a meandering analysis and knit-picking of people's incorrect reactions, and sorry, but that type of belly-aching is the easiest kind of writing there is, and it pisses me off to waste my time reading it.

Yes-- You have every right to feel how YOU feel, and feelings aren't wrong-- my feelings, yours, Lexi's, CJs, etc. But when you start indicating how someone else is supposed to feel, or how they are supposed to react correctly to something, that's where tact, humility and brevity come in handy.

You want someone (a reader that you are trying to attract and retain) to not only understand-- you want them to have very little chance of misunderstanding where you are coming from.

There are plenty of bloggers who write as if everything they believe is self-evident and correct, and they dangle that as a test of purity of intellect for their readers. "Mama be good" comes to mind. She doesn't listen to any of her readers unless they agree with her already; she never takes the time to understand any counter arguments, restates everything she already said when a decent counter point is made, and when she inflames somebody's sense of common decency, she simply moderates it away, scouring it from her page. She's lucky this is the internet and she still has teeth.

I can tell you were less than satisfied by this general misunderstanding, so I apologize for my own comment, and hope we can both take away something from the experience other than bitterness from a bad first impression.

Sincerely, Asshat

Lisa said...

I agree completely with CJ! The point of TUC's post was not about what Lexi wrote, it's about how the masses responded to what Lexi wrote. Why must people always resort to accusations of jealousy when somebody offers a viewpoint that doesn't fall in line with someone else's viral/popular post? It's extremely tiresome and unoriginal.

Extranjera said...

"...a good writer like her is mainstreamed but still marginalized." pretty much sums it up, right?

We need to examine why only certain kinds of truths (do they sell, do they edify, do they stroke the ego, humble, what?) are accepted in the mainstream and why the shift in perception doesn't seem to be to acceptance but to some sort of weird dehumanization of children by removing a complexity from a child's personality and zeroing in on a 'diagnosis'.

ckbrylliant said...

I applaud this post. Thanks for speaking up. People don't want to act. they pay the lip service but when it's time to pay the piper they disappear.

CJ said...

You- the general public. Those who read Lexi's post and immediately jump to the type of comments quoted in the post.

Just because the author states how SHE feels differently than Lexi does NOT mean she is right and Lexi is wrong. She certainly was not telling anyone how to feel, just how SHE feels. Apparently, once someone publishes their opinion or feelings on a topic, you believe no other differing perspectives should be shared?

I highly doubt the point of her post was to gain new readers. Not all bloggers are interested in "going big" or being featured in the mainstream. Again, you missed the point. The fact that THIS article did go mainstream brings about a perception that special needs parents should be pitied to a broad audience. Not ALL special needs parents desk the way Lexi does....hence one of the points if this post.

I think the fact that the negative comments are not scoured off proves she IS listening to you rip apart how she feels and her reaction to the post.

And I apologize for calling you an asshat. It is easy to criticize others when you don't have accountability for your identity and "hide" behind your computer.

TUC said...


The 'Not Jealous of You' post is meant to be a complementary post, my sorrowful and guilt-ridden reaction to what are likely similar things that arouse jealousy in other people. But, you have made me realize that the word "not" does connote contradiction and thus could be read into as a judgement. I apologize for that. Everyone has their own powerful feelings, and mine and Lexi's are no better or worse, or more right or wrong than those of anyone else.

One of the things I like about Lexi's work is that she is real... she is true to herself and brave with her writing. She is also lol funny. We don't need to feel the same way about everything for me to like and respect her. I do hope her exposure with that post draws people back to her blog so that they can see more than that small glimpse of who she is and what she has to say.

Nope, no bitterness, just appreciation for your perspective.

Riley said...

Such a wonderful post... I absolutely hate when people tell me my parents are "saints" for adopting children with special needs. They are no different than any other child.

I also like how this beautiful post has turned into a comment war about a different post, rather than its true meaning: to bring light to a society's progressing but still meager view of Down's syndrome.

coleybudge said...

As a parent of children with neurological impairments, I KNOW first hand that ANYWAY, ANYHOW a family can cope AND educate in a positive direction is a building block . BE kind and loving to these families please. Even if their views maybe different from your own. ACKNOWLEDGE the wonderful and exhausting job they do on a daily basis. COME walk a mile in their day(their day requires walking MANY miles) before you offer too harsh an opinion. GOD bless us EVERYONE! (tiny Tim...Charles Dickens)

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