On the Road with Disability Education

Many of you contacted me about a follow-up after I posted about a presentation that Oliver and I did for a group of fifth graders at a very exclusive private school here in Los Angeles. Last night, I saw my friend who had arranged the whole thing, and she told me that she and the other teachers were very moved by our presentation. She suggested that Oliver and I go on the road to do our thing, and I have to admit that the idea appeals to me. Oliver, of course, is gung ho, so maybe we'll make it into a homeschool community service project. I am still so utterly grateful for this opportunity as it turned into one of the most moving experiences that I've ever had, particularly as I did it with Oliver.

In a nutshell, we faced about fifty-five young boys and girls and four of their teachers, as well as the director of the elementary school. Looking out over the sea of little faces, a diverse group that belied their probable very well-to-do backgrounds (and celebrity parents), I basically launched into a discussion about what it's like to have a daughter who is disabled from seizures and how our culture makes her an other. Oliver sat next to me in a matching rocking chair and easily added in his own observations and experiences. We talked a lot about social injustice, and I emphasized my belief that persons with cognitive disabilities are at the bottom of the totem pole, still, in a world that sometimes very inadequately strives to afford dignity to every person regardless of their sex, sexual orientation, race and religion. We talked about the word retarded, how difficult it is to combat its use. I told them that I still have friends who use it, and how every time they do, I wince and feel defensive about saying something. Oliver told them to stand up and stay cool when they hear the word, that they can tell their friends to knock it off and use a different word.

I told them, too, about my #dontstarepaparazzi movement, and I even showed them one of my shots that I'd taken. We told them that pain doesn't come always from the person with disabilities but rather the culture and the people within it that exclude, fear and pity them. I shared stories of walking with Oliver when he was younger, how he noticed people staring and how angry it made him, that he'd tell me he wanted to kick those people in the legs, Mommy! This part of the discussion garnered a lot of laughs, but I think it also had the biggest impact on them. I welcomed questions, even as I spoke, and I was almost immediately peppered with them. One girl asked what they should do when they see someone with disabilities, and Oliver said smiling and saying hello always works. Then we joked again about Oliver asking me one day, after enduring the stares of a group of kids who were way too old to be doing so, whether he could have PTP. You might remember what this stands for, and the kids in this class laughed out loud when I told them.

One little girl got to the edge of deep emotion when she told me that after a recent outing to an accessible playground where the kids were buddied up with children with disabilities, she felt uncomfortable and sad and couldn't stop crying. I gently told her that being emotional and uncomfortable is normal, that our fears of difference can be overcome. Oliver pointed out that when he first visited Sophie's high school special education classroom he, too, was uncomfortable, but that when he accepted the kids and grew to know them, he realized that there was nothing to fear. We also pointed out that both Henry and Oliver don't feel sorry for Sophie or think she's scary or strange. She's a part of our family and not other. I said that we hated the seizures and felt terrible for her when she had them, but they weren't what made her a human being and that she wasn't to be pitied but, rather, celebrated. 

I emphasized that people with cognitive disabilities have much to offer the world and that while we might feel good when we do community service with them or interact in superficial ways, as we grow more intimate with people of difference, we realize that they are teaching us and have a far bigger impact on us than we might on them.That led to a discussion about what I called disability porn, the type messaging we see on Facebook and in the media and on the internet that masks exclusion and discrimination by somehow celebrating triumph over disability. I pointed out that we can admire and be moved by stories of people overcoming adversity, but that this type messaging sometimes excludes a vast number of people who might never overcome, might not ever talk, might always be very sick or deformed or even die from their disabilities and that they, too, should be honored and celebrated because they are alive and have dignity as full human beings. I read to them the story I had published in an anthology about visiting a very eminent doctor at UCLA, how he was teaching his students on the day we visited and how he gestured toward Sophie in her wheelchair and called her a disaster in front of all of his students, even as I and Sophie sat there in the office. When I looked up, the teachers and students had tears in their eyes, but we discussed for a good amount of time what makes us human and how we might advance inclusion and social justice for people with disabilities, even those that are invisible.

When we were finished, several of the children came up to us and asked the sweetest of questions, often beginning them with the words I have a connection to make. They would then tell me of a cousin with autism or an aunt in a wheelchair or a brother also named Henry, and there was a moment when I wanted to gather up all of these privileged children in my very soft and strong arms and just hug all the hope and promise into me, letting all bias go, including my own.