Monday, April 20, 2015

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.

37 comments:

  1. OH, Elizabeth. Yes. It's a fabulous idea. I wonder if that very eminent doctor might have a child or a grandchild in a classroom somewhere in L.A.

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  2. Elizabeth Aquino. This post. It's Everything.

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  3. Goosebumps from head to toe reading this. Of course you must, if you possibly can. I love that Oliver is your fellow advocate, your sidekick. Everything about this is so right, so wonderful. Such advocacy always makes me think of a story from childhood, Johnny Appleseed. You guys are exactly that. I love and admire you so much, I could burst. xo

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  4. You and Oliver are opening windows and doors and letting sweet bright light into people's hearts.

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  5. This post is truly beautiful, in every way.

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  6. Oh Elizabeth, I am in tears. Thank you and Oliver. To the moon and back, thank you.

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  7. Tears. Thank you. It's beautiful. Yes do go on the road! You are so inspiring.

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  8. Tears here too. I love you and your Oliver. He is made for great things. The home schooling allows him the freedom to express himself in a way that is meant to be. I hope you do this in many other schools as it's needed and if kids can learn half as much as I've learned from you, they'll be that much wiser as they go into the world.

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  9. Tears here too. I have been charged and changed by your courage and your family.

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  10. My god, Elizabeth. We need this message to reach every single person on the planet. I hope you do and Oliver do go on the road. I am sending this to my daughter. xo

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  11. Really lovely to open minds and share with these students.

    Lee

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  12. Lovely. And it's so true. Katie is not disabled in her family, just out in the world.

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  13. Absolutely wonderful. Just...gosh, Elizabeth, there just aren't any words to describe how important that was. This will remain with these kids for a very long time. And this is so, so good for Oliver. It really should be an ongoing class for many, many schools. And you two are just the ones to do it !

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  14. You have made such a huge difference in all these kids' lives, I'm sure. They'll forever remember the dontstarepaparazzi lesson and hopefully react more fully to disabled and differently abled people in the future. It's great that Oliver got to participate, too, and hone his own public speaking skills!

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  15. You made a difference. And there is at least one child in that group whose life you affected in a great way - I am sure of it.

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  16. Such a powerful and beautiful thing you did for those children and adults. You have awakened them and changed the world. xo

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  17. I, of course, love this and everything about this. I am shuddering over your experience with the hapless doctor at UCLA. Horrific. So proud of all the hard work you do to get people to wake up!

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  18. Thank you for all you do for making this world a better place.

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    1. Thank you, Harriet, for leaving a comment and for your kind words!

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  19. I love that you and Oliver are doing this. What a great way to speak your truth and I'm sure Oliver has a special "way in" with the kids. I hope that you find other venues and that it proves to be a healing experience as well as an empowering one. I fully endorse the idea that we can change the world if we just talk to kids about what's important. Keep us posted on the project!

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  20. What a moving account of your and Henry's presentation. You make a great team. There's a crying need for the same in the schools over here. I don't believe it's ever been done (or even considered).

    Your doctor-horror story beats any of mine. He should have lost his license. Of the few stories I've got, these 2 stand out: the neurologist who invited several students into his office to see C. but kicked me out of the room. And the Health Fund doctor to whom we we were forced to bring C. because we were appealing the paltry number of therapies the Fund allotted. His conclusion: "She's as good as comatose." And, of course, who gives a comatose child therapies, right?

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    1. Good lord on the comatose comment. I'd like to say that it surprises me, but frankly, it doesn't.

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  21. Wow...I hope you both made a lasting impression...Keep us posted on future talks.

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  22. Well done. You are so good at expressing yourself, even in the midst of what I consider to be extreme provocation.
    I have to say, I gasped aloud at the part about the "eminent doctor at UCLA" and his atrocious words. Atrocious. What a horrid experience for you; I am so very sorry that happened to you and Sophie.

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    1. Karen -- it happened years ago, and I told the doctor then that my memory of him would not be a good one and that I'd write him into "my book." So, there you go!

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  23. This is so, so wonderful. Mad respect for you two.

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    1. I love the expression "mad respect." Thank you.

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  24. I saved this so I can go back to it and read it again and again and understand why it makes me cry. You are a champion for your children. Your words make me want to swallow up all the fear and be brave. Thank you. Colleen Burns

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    1. Colleen -- It's so good to see your words here! Thank you. I hope that you are well. Email me and let me know how things are going.

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  25. Yes. You should do this. We've found that addressing kids directly is incredibly powerful. Sure, there'll be some adult obstacles along the way, but there will be even if you don't go do this. So... do!

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    1. Greg Pincus -- Any suggestions on how to to do this?

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  26. It sounds like it went a whole lot better than that last thingy with all the stupid condescending neurologists. I wish you could come talk to our homeschool group. I want to know how to make our communities more inclusive too. I want you to talk to me about social justice. Sounds like I might need to follow this up locally huh? humm.

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    1. Emily P. -- I wish that I could come and talk to your homeschooling groups, too! If I get that Airstream, I'll make my way to you.

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