18 February 2014

More Alike or Just Different?

I've been thinking about this for some time now (actually, for longer than I care to admit - *sigh* how I've neglected this blog this past year), but I felt that this post needed to be crafted very carefully. My words needed precision. I couldn't just come out with it. But honestly, it needs to be said.

I am sooooooooo freaking tired of this "more alike" thing. Not only tired of it, but when I really think about how the message "we are more alike than different" frames and positions people with Down syndrome, my son, anybody with an intellectual disability, it makes me angry. And sad.

But honestly? I do it all the time. I'm constantly managing those perceptions. I tell the same story (maybe not with those exact words, but with the same intended meaning). Because systems are set up in a way that I have to, and I have to help other families do the same to ensure our children are included fairly in a public education. And, well, let's face it... most of us do it every day to "show the world" how great our kids are. Correction: the real reason we feel compelled to do it is convince the world our children, loved ones, friends with an intellectual disability have intrinsic worth as a human being.

That's what this boils down to. A way to convince the general public (and teachers, and community sports organizations, etc.) that people with disabilities are just like us so we should give them a chance. Include them. Value them. And, of course, in many regards the message is true. Our children are similar in many regards, and we want people to recognize that. But that has become the primary tool in our advocacy box. That's how we raise awareness and advocate for our loved ones. It's how we tell parents facing a new diagnosis that everything is going to be ok. It's the face of Down syndrome to the world.

But the very act of pushing Sheridan as more like his peers than he is different from them sets up an inherent juxtaposition to his differentness. Sure, we all celebrate diversity. And at the same time, very few segments of our population are still marginalized for who they are - are forced to prove their worthiness of existence. People with Down syndrome and other cognitive disabilities are one of them. Because people with cognitive impairments are often viewed as less human. Intellectual ability is one of the things most valued in people - I know, because I've had to face my own biases around that.

Focusing on the "more alike" message forces our children to measure up. Measure up to the mythical normal. Measure up to non-evidence-based state standards for education. Measure up to people's acceptable parameters for what it means to be human. Measure up to a whole host of other things that in the end don't matter. 

Sheridan is just... different. And I am angry and sad and sometimes feel truly helpless as a mother and advocate thinking about the void that exists in terms of acceptance of his differentness. How his very existence is questioned. "You know, there's a test for that" a (former) friend once told me when she learned Sheridan has Down syndrome. We have plenty of messages in our lives celebrating diversity with regard to race, ethnicity, sexual orientation... but the real issues around how people with intellectual disabilities are (not) valued are captured with a sickening "but wait - we're like you!" 

Let me say it again: Sheridan is JUST DIFFERENT. But not intrinsically less than.

And I will continue to send the message about his similarities, because he's that, too. And because our current paradigm requires that I make people see that he's more alike. 






9 comments:

  1. I couldn't have said it better, Lisa. This really brings together both points so well. Our kids "are" more alike in so many ways but at the same time, John Michael is obviously different than the other kids in huge ways. To avoid that or make light of it, lessons the gifts he brings with having Ds. I've learned so much from him and his "differentness"... from not only him, but Sheridan and all their peers with Ds. I'm a better mom because he's different and makes me really stretch myself and learn to adapt to a different way of parenting and loving my child. Thanks for this... I'm so with you on this!

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  2. Wow Lisa, this is perfectly said. I wish I had read something like this five years ago. My Kimani is more different than alike as far as how she moves through this world, and I am so tired of fighting to convince everyone that she, nevertheless, is worthy. Angry and sad, yes I feel that way too.

    You have to come here more often. I miss your voice :-)

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  3. Great post thank you you!! To be included we fight for more alike on one side of the mouth, the otherside we say: celebrate diversity... welll which is it???? I do both and it is crazy making. Because in this culture to be different is to be stigmatized, to be seen as less than..... when a person is less than then it is easy to not include them. My head is spinning and I wish I had the sum it up sentence!!!! So I say thank you...
    Liz Tree

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  4. You forgot too mention how beautiful and loving they are. How close too God they are too.
    My little Grand daughter is so pressious so curious and full of love yet really devilish she knows what she is suppose to know.But will face challenges in her life eventually But with mom and dads help she will do just fine'
    Faiths Grandmother.

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  5. Hi there! My name is Sabrina and I am the founder of the online platform known as Special Miracles - Down syndrome. I currently have over 150K+ followers and my goal is to continue to raise awareness and to celebrate the lives of those with Down syndrome. I started this journey in 2013 soon after the birth of my second son Colton, who also happened to come into this world with an extra chromosome of awesomeness! Emoji

    Anyway, I recently launched a digital/online magazine called Special Miracles and I am writing to you today because I came across your blog, which I enjoyed very much, and was wondering if you would like to volunteer to contribute a blog post/ article to the next issue of Special Miracles, which will be LIVE in mid march.

    I know that this is late notice, but if you would like to share something that would be relevant and helpful especially to new parents that would be great. If possible would love a couple of Hi Res images to include as well.

    If you do send me something, I will also have your Blog Bio on there with the links to it for readers to be able to connect with you that way and follow your journey. Please email sabrina@specialmiracles.com

    Thank you in advance for your time and your blog ;)
    Sabrina
    www.SpecialMiracles.com

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  6. I read the article about your family in "Dandelion" today and went to look up your blog. Your last article is very well written, it's often these very well-meant, very easy to miss finer points that make a difference and it's also often very hard to put your finger on what exactly doesn't feel quite right. I haven't read much else on the blog so far, but I just want to say that we have had only positive experiences with my son Liam (nearly 11 years) in the public school system. No problems at all. I have to read on about Sheridan, I guess, to see where his experiences differ. I'll subscribe!

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    Replies
    1. I am looking into NADC as an alternative to Alta. My 2 month old son with ds has only the use of one lung and is still on an NG tube. I feel like he needs more individualized therapy. Can you give me your thoughts on NACD?

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