Lucas Camilo

Burke and I have been talking for about two years now about adding a “resources” section to this blog, since we’ve learned so much about parenting and disability from books, magazines, films, friends, and other blogs.  But creating an exhaustive list of everything we’ve read has felt too daunting.  However, with Lucas napping and a good cup of coffee on hand, I’m finally going to take the plunge.

Or maybe I’ll wade my way in to this, since I’m not sure if I can do justice to the two books I’ve loved the most so far.  So for now I’ll just name then, and maybe I’ll say more later.  But you should just read them – they’re both memoirs by powerful women who are also awesome storytellers.  The first is Too Late to Die Young by Harriet McBryde Johnson.  The second is Knowing Jesse: A Mother’s Story of Grief, Grace, and Everyday Bliss by Marianne Leone.

The book I read most recently is No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro.  It is an extremely accessible history book about the disability rights movement, and since Shapiro is a journalist, he’s practiced at telling people’s stories.  The book focuses mostly on the activism of people with disabilities and their families in the 1960s-80s, though he knows his history going back much further.  Everyone who can’t already tell me when the ADA was passed, whether or not deafness is a disability, and what a CIL is should read this book.*

Because the author is so good at telling the stories of the activists, organizers, and rabble rousers who have made up the disability rights movement, the book feels very personal.  He tells the story of Ed Roberts, a student at UC Berkely who had had polio in the 1930s and then became a quadripalegic.  Roberts pushed the UC Berkley, and was the first quadripalegic admited, along with his iron lung.  Together with other students with disabilities, he organized for the right to live first on campus (they were only allowed to live in the campus hospital initially), and eventually created the first Center for Independent Living, a space where people with disabilities could hire their own attendants and make their own choices about how they would live.

The book tells the story of the emergence of disability as an identity, and especially as a source of pride in the 1980s.  But it also goes back through the ugly history in this country of isolating, institutionalizing, and trying to erase difference and disability.   There were major efforts to stop the use of American Sign Language through the 20th century, as hearing “experts” insisted that deaf people could be forced to assimilate through lip reading.  Shapiro traces the story of the suppression of ASL and its relatively recent reemergence as a common language for deaf people.  The author also tells the life story of his own friend with intellectual disabilities, Jim , who was institutionalized for nearly his whole life, from 1959-1992.   Shapiro tells about some of the so-called “behavior modification” techniques that Jim suffered – and certainly compounded his difficulty connecting and communicating – that were acceptable at the time.

The indignity and outright abuse thousands of people with disabilities have suffered in institutions was difficult to read.  Though most major state “mental institutions” were closed in the 1980s and 90s, today people with disabilities who cannot afford their own home and personal assistants are still forced into nursing homes and other smaller institutions – where they have little to no autonomy over their own bodies.

The fact that the book ends near Jim’s story is telling.  The disability rights movement of the 1960s-90s had epic achievements, both in terms of rights and shifting our national culture toward inclusion of people with disability.  As a parent, I am so grateful that Lucas was born now and not 50 or 100 years ago, when the dominant culture shamed families of children with disabilities.

The book also felt incredibly personal since we as a family benefit all the time from the work of these disability rights activists – every time we roll into a library, theater, zoo, aquarium, or up the elevator on the ferry.  I felt like I was reading the history of our people.  I cried through the chapter on the history of the wheelchair (though it was not written to be a tearjerker).  I felt so grateful for the people before us who demanded something better – lighter, faster, easier – than what medical supply companies said was possible.

But of course we still have a long way to go, and I’m dying to read the sequel to No Pity (if anyone has suggestions?).  But in many ways it is still being written.  The emerging disability justice movement is redefinining the goals of people with disabilities — no longer wanting just “independence” and equal access to a broken system, many disability activists are talking today more about “inter-dependence” and the need to address racial, economic, gender and all other forms of inequality and oppression that co-exist with ablism in our world today.  And at the same time, we have a major political and cultural fight on our hands to defend what many of these activists have won in the last half century.  I live in fear of the ideology of the extreme (and maybe even moderate) right — each person to her or himself.  You only deserve as much as you work.  On the contrary, I want to live in a society that provides for people what they need, whether that is wheel chair ramps or sign interpreters or personal assistants around the clock.  But with Social Security and Medicaid and many other forms of support for people with disabilities on the chopping block, the future of the victories of the disability rights movement feels uncertain.

But now I’m wading into the territory of writing a book rather than reviewing one!  So here’s one more review – a hopeful sequel to Jim’s story.

We just watched “Wretches and Jabberers,” a documentary about two men on the austism spectrum who communicate primarily through typing.  (If you have Netflix, you can see it on-demand there.)  They were both institutionalized as children, but now they have become advocates and spokespeople for people with intellectual disabilities.  The documentary follows them and their two assistants as they travel to meet other people with autism in Sri Lanka, Japan, and Finland.  The movie critics don’t seem to love it (based on my quick skimming of reviews) because it’s slow.  But the critics miss the whole point.  The “jabberers” in the title refers to the rest of us — the people to whom language comes so easily we overuse it.  Tracy and Larry work so hard to get each word out that they, and the people they meet in their travels, choose their words with precision, then type them out one slow letter at a time.   Tracy and Larry are poets, artists vividly describing their unique perspective and experience of being human.  It is absolutely worth it for us jabberers to sit quietly and listen.

Thanks so much to Carol Tyson for helping us find these and more books and resources.  She actually compiled a 10-page document for the bookstore at Busboys and Poets in DC – suggestions of books to add to the shelves – which we’ll figure out how to link to soon.  And thanks, too, to Lezlie Frye for also helping assemble our ongoing reading list.  It is good to have friends.

* Answers: the Americans with Disabilities Act (ADA) was passed in 1990 and signed into law by George HW Bush; some deaf people do consider deafness a disability, some do not; and Centers for Independent Living (CILs) are housing centers for people with disabilities where they are given support to live as independently as possible.

Last Friday – August 17 – was Lucas’s 3rd birthday.

Whereas last year we had a big party in his honor this time around we kept it low key.  Lucas woke up a little grumpy on his birthday and didn’t seem too excited about anyone singing him “happy birthday.”  But by the afternoon he was in a good mood and the three of us spent a great couple hours sitting by the lake, recalling some of the early days of being a family together and mostly feeling glad to be alive.  We found it hard to articulate something as momentous as 3 years of life – especially for a kid who barelymade it to his third day of life – and so we didn’t bother trying much.  Instead we convinced Lucas to sit down in the water with Burke and get splashed by incoming waves.  It was 90 degrees, after all, a rarity for Seattle, and despite initial reservations Lucas ended up loving the dip.

On Saturday we had an actual party for Lucas.  It was a family affair, with Krista’s mom coming up from Portland and Burke’s parents, sister, brother-in-law and 3 nieces joining us at the park for a picnic.  Lucas indulged his recently amplified Sesame Street obsession by playing with Bert, Ernie and Cookie Monster figurines (not to mention “Grande Parajo”, his name for Big Bird in Spanish.)  Burke made balloon animals for all the kids, and we took turns reading books with Lucas and testing out new flash cards.  Then we pulled out the blanket swing, one of Lucas’s favorite pastimes, and Lucas showed off how he can count to 24 in Spanish as two people throw him into the air with the blanket.  For the first time ever Lucas got to do a double-swing, with his cousins – first Tya and then Madden – joining him inside the blanket for the ride.  Then he watched as others enjoyed the swing and demanded “Daddy do it!”  Sadly, Papa and uncle Brandon were not up for the job of swinging Burke in the blanket.

The reason we went to this particular park in Columbia City was that the Lorax movie was set to play at sundown.  Of course, by the time 8:30 rolled around Lucas and his cousins were too beat to stay up for the movie.  But the cool thing about doing it at the park ahead of the outdoor screening was that lots of other kids were around, and a group of them ended up jumping into our celebration.  Even though he didn’t get to see the “Worax”, Lucas was pretty pleased about the whole thing.  We think it was just about the best birthday party we could have had.

The next morning Krista was up bright and early to do a triathlon!  Lucas, Burke and Gramma made it to the finish line just in time to see Krista cross a good 20 minutes before she predicted.  Lucas was proud – “mommy did a race!” he said – and so were the rest of us.  All-in-all a good birthday weekend.

We are behind in posting here, and it’s hard to know where to start with a Lucas update these days.  We’ve been taking full advantage of our wheelchair van super-mobility, feeling lucky to have such great friends and family to hang out with, and so many beautiful parks, beaches, and mountains to explore in and around Seattle.

Since we’re not going to write about it in details, it feels worth making a list of places we’ve taken Lucas, to mark (if just for ourselves) how totally mobile our life is right now.  Two years ago it felt like most of our trips out of the house were to the doctors office, and even those trips were rare.  But just in the last 15 days we’ve gone to:

– Paradise lodge at Mt. Rainier for the weekend, with Gramma Susan, Charles, and Aunt Megan

– The library, music class, and the post office (Lucas loves stamps, it turns out)

– The Arboretum and Seward Park with Tio Sha, who came to visit last week

– A long meeting with the school district to finalize Lucas’s IEP (thanks to Stef for coming along to entertain Lucas so the two of us could participate in the meeting!)

– Hood Canal this weekend, with three other families and their many small kids

The hours in the van haven’t been Lucas’s favorite, but as long as he’s not totally exhausted he tolerates the longer-haul trips.  But of course sometimes he is exhausted, so that has meant a couple hairy moments, with Lucas looking absolutely misearble, and us trying to discern if he’s having trouble breathing or just grumpy.  And we’re still not sure all the time, and it feels terrible to think you’ve put your kid in a place that is painful… so there have been those moments too.

An upshot of the van is that it came equipped with a working sound system (unlike our old car), so Lucas can now request his favorite song on repeat.  Which can drive a person crazy, but then if he doesn’t get it he’s able to cry like he’s having trouble breathing, so we hurry to put it back on.  And miraculously the “Sticks” and “Naranja” songs sometimes seem to clear his airway :)

Speaking of the “naranja song,” Lucas’s latest obsession is Spanish.  He suddenly realized that some of the books we have are in Spanish — books that for the last year he hasn’t wanted to hear — and he got excited.  It started with La Oruga Muy Hambrienta (The Very Hungry Caterpillar).  He memorized “una manzana” (one apple), “dos pears” (two pears), “tres ciruelas” (three plums)…  Then he went on to memorize the caterpillar’s entire Saturday menu (un biscocho de chocolate, un helado, un pepinillo, un trozo de queso suizo, etc.)  It may seem hard to believe, but Lucas now has the entire book memorized in Spanish.  He proceeded to counting a week later, and has now mastered going all the way to 15 in Spanish, and he’s close to 20 (see the video above of when he first got the counting bug).  Each time he gets to where he’s going, he finishes with such glee.  His counting sounds like this: uno, dos, tres, cuatro, cinco, seis, siete, ocho, nueEVEEEE, DIEEEEEEEZZZZZZ!!!!!!!  He does the ASL signs (or tries) along with the number, and shakes his fist in the sign for 10 along with his ebullient “DIEZ!”  It’s pretty amazing to watch.

So his favorite question these days is “how do you say ____ in Spanish?”  We’ve gotten “how do you say scoop in Spanish?” (sacar).  “How do you say plunger in Spanish?” (embolo, for a syringe).  “How do you say walrus in Spanish?” (el morso).  This is testing even our vocabulary, so he’s learned what it means when we say “do you want me to go look it up?”  He always says yes. He’s even asked, “How do you say Spanish in Spanish?”

We have a number of friends who are raising their kids intentionally bilingually – something we maybe thought we’d try, long before Lucas was born.  And then there were so many other things going on, we never got around to the Spanish on any regular basis.  So although this fascination isn’t exactly turning us into a bilingual family, it’s thrilling to see him pushing us, and even getting experimental.  The other day he was trying to tell us something that we didn’t understand, so we asked him if he could “use another word,” (a cue his speech therapist has been working on.)  He sort of sighed and declared, “how do you say Butterfly in Spanish!”  He had been pointing at his temporary tatoo, saying “Mariposa tatoo!”

And then we got out his Hungry Caterpillar playing cards (yes, they exist), and Lucas was looking through them, naming the fruits and other foods.  At one point he held up a handful or cards with the caterpillar them and said admiringly and to no one in particular, “Look at all those Orugas.” He looked like a king counting his gold… in Spanglish!

And speaking of counting your blessings, there’s wonderful article in the Atlantic by a mother of a son with disabilities.  She writes beautifully about the feeling of fullness, of having everything you need, even when from the outside your life looks hard.  Even when your life IS hard.   You can read it here.

We keep meaning to share the many resources that we love, so look out for some more book/article review soon.  And if you have great resources on parenting or disability or parenting and disability, send them our way and we’ll compile a resources page.