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.