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. 

The Cutting Edge

Being on the cutting edge is supposed to be cool. Hip. Desirable, to be sure. And that's the backbone of many industries, the fashionshpere especially. But when it comes to people with disabilities, especially intellectual disabilities (IDs), being on the cutting edge means that you might literally be cut out of the picture. Left on the fringe - yet another example of how people with IDs are often marginalized in our society, and how we parents are fighting for full inclusion not just for our children's education, but for life in general.

It's true that we see more and more people with Down syndrome, for example, in the media (think Lauren Potter, the young boy in the Target ads to whom a certain dad in our community brought media frenzy, etc.). But in general, people with disabilities aren't in mainstream view. I don't think it's purposeful (at least, not always). And I think it can change, quite easily in fact.

For years I've reached out to brands like crewcuts (JCrew), mini Boden, Tea Collection, GAP, Old Navy, Zara, Converse, United Colors of Benetton, and more recently Peek and businesses like Tiny Prints (now owned by Shutterfly), and Pottery Barn (although, truth be told, I'm not even sure my emails are getting to anybody). I've told them I am a loyal customer (a little too loyal, at times), that I love their style, and that I hoped they would begin to think about diversity in a different, more expanded way.

Diversity is not just about race, ethnicity, sex or any of the other demographic categories people tend to focus on... we need to show diversity with regard to abilities, as well.* And, I think the inclusion of people with IDs - or disabilities in general - is just not on people's radar unless we put it there. A recent example of this was Tori Spelling's Little Maven search for models with disabilities. I applaud Ms. Spelling's response to a mom's letter by creating a contest of sorts (I especially applaud her for not making it a popularity contest by requiring votes or anything like that). And in the future, brands should be telling their model agencies that they want truly diverse models. Without making it a contest at all.

Why do I think this is so important? It's "just" fashion or stationary or furniture or lunch bags... it's "just" a catalog or a website. Why would it even matter?

It matters because I don't want my son growing up in a world where he is invisible. Where people like him don't exist in our view. I hate that everyone gets giddy (as evidenced by all the shares on Facebook) about that one episode, or show, or advertisement, or whatever that features a person with Down syndrome, or CP, or Autism, etc. I hate that it's a cause for celebration when we have that rare sighting. Because a full 20% of our population carries the label "disability" yet people with disabilities are rare in our media, and even more rare when it comes to consumer marketing (yes, I am aware that, for example, Toys R Us puts out a special catalog once a year for children with disabilities and that Infantino has the "Everybody Plays" campaign).

So, I hope that people like Joanna Lee (JCrew), Rory Edwards (GAP), Johanna Langford (JCrew), Leigh Rawdon (Tea Collection), Emily Meyer (Tea Collection), Laura Ching (tiny prints), Gabriele Lunati (Benetton), and the many other founders, directors, marketers of major brands begin to expand their own visions of what they do (after all, many of these industry leaders are parents themselves who must understand the importance of valuing every person for who he or she is).  These brands represent what others look up to, which means other brands might very well follow suit. These are brands that celebrate diversity. I just want them to celebrate diversity inclusively. I want them to push the envelope of what is cutting edge.

Because in the end, I want the image of disability to be a complete non-issue. I want to not even think twice when I see a child, adult, or baby with a disability in a catalog or online. I want my son - and others like him - to be so fully visible in this life that it's no longer cutting edge to include him.

*Note: I know not all disabilities are visible, so it's possible that more people with disabilities have been included in recent marketing campaigns, but my (albeit limited) research hasn't turned much up.

Edited to add: Writing this made me want to take a little nostalgic walk through Sheridan's wardrobe... why does clothing make you feel so sentimental?

crewcuts, Livie & Luca

Little Maven, Livie & Luca

crewcuts, Tea Collection, Zara, Uggs

crewcuts, holiday card from tiny prints

Taken 3 years ago, this is one of my all-time favorite pictures of Sheridan; Little Maven, Tea Collection, Converse

Another favorite image; mini Boden

Oh how I loved this mini Boden porcupine sweater (good thing I saved it for Cyan!)

Tea Collection (look how little he was!!!)

Sheridan has recently started to put his own outfits together, including his request to add a tie to this casual ensemble from crewcuts, Next, Converse, and Peek

Sunday, Monday, Happy Days

Sheridan has become very interested in time and days of the week lately.

He walks into our room every morning, gives me big hugs and kisses, then asks, "What time is it?" Given that "Too early," "It's still time for night night," and "Time to go back to sleep" weren't satisfying his curiosity, we put our little alarm clock by the bed and he loves to push the button, turn the light on, and tell us what time it is. And he's getting really good at it. He still doesn't have a full concept of time and telling time, but he's always using time landmarks throughout his day, such as "It's almost dinner time" and "It is breakfast time." And he will randomly tell us what time it is (without looking at a clock) - this past Sunday afternoon (around 12:30) he announced it was "six-oh-three-fifty-two o'clock." So, he's taken an interest and we're rolling with it. He's getting pretty good at reading a digital clock.

Then there's his new thing about on what days some things will happen. When he says goodbye to his Becca on Monday, he always reminds her that he will see her on Wednesday. And then again on Friday. Sometimes he'll ask to see one of his speech therapists after school, and I'll tell him, "You get to see Miss Jane tomorrow." Or sometimes he'll ask to do some activity but we can't do it that day so I'll promise him to do it tomorrow or on Saturday. He's become very interested in this concept of time, so I made him a little weekly wall calendar:

Seven individual squares that are velcroed to our living room wall - and I used a wet-erase marker to write the big events of the day. This way, he can learn the days of the week, and see what the big events are for the day (e.g., on Sunday he goes horseback riding with Amber and Shadow, on Saturday he has ballet and then a birthday party).

On Thursday he'll go to school, then see Miss Emily for speech.

Because he's been learning to read - and it is one of his favorite things to do - I figure this could double as a way to learn new sight words (at school he's learning to read via phonics, at home we use sight words and he is kicking butt in both methods). And I created little manipulatives that he can take on off to designate "today" and "tomorrow."

The other nice thing about this: my mom is starting to help me 1-2 afternoons a week when I need it (I'm on an informal order of rest for the remainder of the pregnancy). And this past week Sheridan would cry on some days when I would pick him up (because I wasn't my mom - he LOVES his Nonna). So, I can add my mom on the days she will come so he can know on what days to expect her, and on what days he should expect me (and hopefully decrease his disappointment at plain ol' mom walking in the door).

I'm sure preschool and kindergarten teachers will have plenty of critiques of my method (and feel free to tell me how to improve it), but I'm not trying to do anything rigid here. Just taking advantage of what seems to naturally interest him, and help him learn more about it. 

One final note... I had to move his beloved 1-20 number line to another location to make this fit in our living room. I've wanted to take it down numerous times, but every time I think about it, he starts using it for a new skill - lately it's been counting backwards from 20 to 1. So, back up it goes in our hallway, and my house continues to look more like a preschool than a home. But I'm ok with that.

Sheridan's First Year of School

I've been meaning for some time to write a post about Sheridan's first year of school. That will still have to wait... but for now, check out this quick video I made for his annual IEP (that's 4 months late).

I recommend viewing full screen so you can see better :)

The Language Game

Remember my post about Sheridan's recent "colorful" additions to his vocabulary? Well, I just had to share this post from a dear friend of mine who has two amazing children - his eldest, Jack, has autism.

I'm not going to lie, it's nice to see I'm not the only parent who deals with these things. And I'm pretty glad I don't have to deal with the same, uh, "level" of language he is... yet.

Check it out. It will totally melt your heart, make you proud of him, and make you laugh out loud.