Global Crisis

If we define the worth of an individual by what they do, and then say - look, people with disabilities can do many things - what about those people who do less? Have we devalued them? By adopting the epistemology of "do" = "worthy," we implicitly reinforce disability hierarchies.

My son Nico is a wonderful, talented, smart boy. He has profound verbal delays in expressive speech, and in our society, expressive verbal ability tends to place limits on inclusion. If we presume achievement in neurotypical norms is the pathway to asserting value, Nico loses in that contest. Instead, we have to reject that epistemology and assert value based on broadening our perception of shared humanity.

I write this because of a powerful essay by Liz Rouch in The Mighty. Have you read The Mighty? It's an awesome site, featuring essays mostly by parents in the special needs community, run by long-time media professionals, trying to create space for new kinds of essays. And here's one by Rouch.

News stories abound everywhere on social media, like Facebook, Instagram and Twitter, with pictures galore of children and adults with Down syndrome, autism or other disabilities. In these pictures the children are participating in athletics like cheerleading, basketball and wrestling for their school teams, graduating from high school with their diploma in hand, modeling for Target, Nordstrom or Toys ‘R Us catalogs, getting a job or even being a bat boy for the Cincinnati Reds.

 These are all amazing achievements from awe-inspiring individuals, and we all go “ooooh,” and “aaaah,” and smile. Maybe we even shed a few happy tears watching the videos, hearing the stories and seeing the pictures. Especially those of us who have a child with the same disability. We revel in it, all the while probably secretly, or even outwardly, hoping, yearning and praying for the same or higher accomplishments and recognitions for our child.

Now don’t get me wrong, I think it’s wonderful these people are all able to participate in something they love and excel at it. And I really do enjoy seeing their happy faces beaming with the pride of what they’ve achieved with a lot of hard work. There are so many individuals exceeding expectations, goals and misconceived mindsets, and it is a sight to behold. Of course they should celebrate and share their accomplishments, but I think we as a society desire the “higher functioning” child

What about those so-called “lower functioning” individuals? What place do they have? Shouldn’t the child quietly sitting in a wheelchair deserve as much recognition and acceptance for their abilities, whatever they may be or as minor as they may seem?

This is my conundrum too. How to celebrate without excluding. Read the whole essay. She finishes:

I want these people to be valued and praised as much as the ones who can run, talk, dance in recitals, score a touchdown, shoot a winning 3-point-shot, earn their high school diploma or graduate from college by the time they’re 16. I’d also love to see a child with Treacher Collins syndrome or a cleft palate (repaired or not) grace the pages of a department store catalog.

If you’re promoting the acceptance of disabilities, then please embrace and include everyone — the lower functioning, the mid-functioning and of course the higher functioning. They all have a story and need to be celebrated because in the end all life is precious, no matter the functioning level.

I share the concerns. I see the "get disabled kids into advertising" campaigns mostly succeeding in putting conventionally cute white children into advertisements. I see the "high functioning" label being used to segment and divide. These results are unintentional. They are also true. What do we do? How do we fix this?

So again I say, as I do almost every day - fight disability hierarchies. Parents, high functioning individuals, people with physical but not intellectual disabilities, white people with disabilities, wealthy people with disabilities - we are atop the disability hierarchy. We have power and privilege.

Use it to change the epistemology.