Lucas Camilo

We did the MDA walk this past weekend.  Lucas didn’t love it at the time, but he’s been talking it up every since we left.  There was a lot of entertainment for kids, and Lucas really liked meeting the “robots” (people in full Star Wars costumes), a cowboy, a face-painting clown, and another little boy’s service dog, Zoe.  He was especially excited about the sparkly panda the clown painted on his hand.

The event was smaller than we imagined it would be.  The Muscular Dystrophy Association has such a presence, we imagined thousands of people.  We told our friends who were coming that we would send texts to try to find each other, but the extra planning turned out to be unnecessary.  There were probably a couple hundred people there who were with someone affected by muscle disease, a couple hundred more who were staffing or volunteering or entertaining.  There were some really sweet moments at the “stage,” including a hip-hop dance performance by a 10 year-old with muscular dystrophy.  A crew of Seattle cheerleaders stepped up to do a dance performance, and out of the crowd rolled a teenage girl in a power wheelchair who joined the dance line.  She knew the moves, and though her dance moves looked different, she was clearly feeling the music and grooving as much as anyone in the room.  It felt really nice to be in place where she could be welcomed, where the crowd would celebrate but not stare at her dance moves.

As we walked away from the event, the two of us felt a little sheepish about the tone of our previous post, worried that we let our politics get ahead of our actual experiences.   Although the MDA has a rough past, this experience felt useful to us, and it seemed like it was an empowering experience for a lot of people.  So thanks to all of you for sticking with us as we explore our thoughts and feelings through this blog, even when we throw out ideas that are still in formation.  And of course many thanks to Jacqui for coming out to the walk with us, and to lots of you for sponsoring us (we reached our fundraising goal)!

This weekend we’re participating in the MDA “Muscle Walk”.  Most people have at least heard of the Muscular Dystrophy Association and for some, like us, it probably evokes uncomfortable connections with “Jerry’s Kids” and the infamous telethons featuring Jerry Lewis.  According to its website, the MDA is “the nation’s largest voluntary health agency dedicated to funding neuromuscular disease research, health care services and education.”   Though education, direct support  services and advocacy are listed among the programs that the MDA participates in, it’s clear that most of the money raised actually goes towards research.

The truth is, we were pretty ambivalent about participating in the Muscle Walk given that the MDA’s politics around disability don’t really jive with ours.  But we also see it as an important opportunity to connect with and be around other families of kids with special needs.  It’s been really good for Lucas to be around other wheelchair users and for us to meet and learn from other people who deal with muscle disease in their lives.  Also, we do believe that raising money for disease research is very important, even if it’s not where much of our energy around disability rights and disability justice has been directed.

So…. we’re not doing an all-out fundraising campaign, but we would appreciate your support as we are try to raise up to $500 that will go to research around MTM.  You can donate to Team Lucas here.  And if you’re in the Seattle area please join us at 9:30 am on Saturday at CenturyLink field.

For those who are curious, here’s a little more background around the controversy surrounding the MDA and Jerry Lewis (with help from Wikipedia).  The MDA has been criticized by disability rights activists for their tendency to paint disabled people as “pitiable victims who want and need nothing more than a big charity to take care of or cure them.” (The quote comes from the critical documentary film The Kids Are All Right which you can watch online.) By focusing attention on medical cures which would “normalize” disabled people, the MDA has failed to address issues like providing accessible buildings and transportation, employment opportunities and other civil rights.

Though we are excited about some of the research breakthroughs related MTM — which we plan to report on in subsequent blog posts — we continue to be most inspired by organizations and individuals who fight for accessibility and policy changes that benefit people with disabilities.  On a practical level, we recognize that the MDA and other organizations have poured millions and millions of dollars into research over many decades and yet there still is not a cure for Muscular Dystrophy, or for any other significant muscle disease for that matter.  Meanwhile, other struggles have been fought and won that make life better for people living with disabilities.  On a personal level, we recognize that Lucas’s life may be impacted by a possible treatment or cure for MTM, but its just as likely that it won’t, and therefore we’re much more interested in doing all we can to help make his life fulfilling, knowing that he has very weak muscles.  Finally, on a political level we’re into challenging and changing systems of oppression, such as the way that people with disabilities are often excluded from various places and institutions.  Even if a cure is found for Lucas’s particular muscle disease, millions of other people will continue to face oppression within a society that still excludes and discriminates against people with disabilities. And if a drug treatment is developed, it will be costly and likely inaccessible to many, at least initially.

All that said, we’re fortunate to live in a world (and a political sub-culture) that has been so influenced by the serious pride that has been an important part of the disability rights movement.  So we’re going to the “muscle walk” this weekend with a little bit of trepidation about the institution, but also lots and lots of pride for Lucas and all the kids and families celebrating their full, wonderful, complex lives with disabilities.  If you come, look for the family that is rolling along, waddling like penguins and singing Brown Bear Brown Bear at the top of our lungs.

Lucas has been loving school lately, and in a much more interactive way than he did in the fall. Back in October, after spending the whole morning quietly taking everything in at school, he’d come home and — with a little prompting — chat away about the songs, the books, and what each of his teachers did.  Since he could be so reserved at school, we started to worry tha his teachers and classmates might not know what a brilliant and hilarious kid they had in their midst.

But recently the reports we’ve been getting from his nurses and teachers is that Lucas has become a chatterbox. He often uses a microphone at school, and for the first time ever they had to turn down his volume down on Tuesday to let the other kids get a word in over Lucas’s singing, reading, and general monologuing about the day.

We’re not sure what caused the shift, but it may possibly have been January’s Book of the Month. Lucas is a HUGE Eric Carle fan: he’s memorized The Very Hungry Caterpillar AND The Grouchy Ladybug in English and Spanish, and we just might lose our minds if we have to fetch and read Panda Bear, Panda Bear one more time. Well, much to Lucas’s glee, Lowell preschool’s January book of the month was Brown Bear, Brown Bear (by Bill Martin Jr., pictures by Eric Carle).  All month long he’s been telling us about reading it at school, wishing we had a copy at home.  It turns out that he’s also been doing brown-bear-brown-bear inspired art throughout the month, coloring and gluing animals that reflect the story (brown bear, red bird, yellow duck, purple cat, etc.)  On Monday he brought the culmination of all his work home with him — a spiral bound version of the book with his art, complete with a title page that says “Brown Bear, Brown Bear, by Lucas Hanson.” You’d think he’d written the next great symphony, we’re all so proud around here. And Lucas is proudest of all. He reads the “by Lucas Hanson!” with absolute delight.  And then proceeds to read the book to himself or anyone who will listen over and over and over again, pointing out how he glued the feathers on the bear himself! (feathers = brown felt.)

On Tuesday we heard that his class would be celebrating Valentines day the next day  (no school for Lucas today), so we figured Lucas shouldn’t be left out of the festivities just because we hadn’t bought any valentines.  Slightly delirious and feverish, Krista helped Lucas cut out pink and purple hearts and then spell out the names of each of Lucas’s classmates (Have we mentioned he loves spelling?  But since he’s three, this was a slow undertaking.)  We then threw some more heart and other stickers into the mix and packed them in his backpack so he’d be ready to Valentines it up with the best of them.

But it turns out we got the memo wrong — Lucas was the only kid who took Valentines to school.  But his wonderful teacher turned it into an opportunity.  She let Lucas hand out his valentines, making it a special occasion for each kid to come over to Lucas, letting him show off how he had spelled their names.  We’ve worried that the other kids in his class don’t know how to play with Lucas (or possibly that the teachers don’t know how to make it happen), so it felt especially nice for Lucas to reach out and share his love with each of his classmates.

Lucas got to see his second live kids rock show in the last month… this time a local band called Recess Monkey.  We’ve only recently been turned on to their music (as opposed to Casper Babypants, who Lucas listens to religiously) but since the show was 2 blocks away at the Mt. Baker Community Club we couldn’t pass it up.  And, his cousins Madden, Tya and Ellody all came along, along with Papa and Aunt Ashley.  A real family affair…

As soon as the music started rocking Lucas got into the spirit, and everyone had a blast dancing around to such hits as “Marshmallow Farm” (Lucas’s new favorite) and “Haven’t Got a Pet Yet”.  Check out the video clip below:

After a nap later in the day, the cousins were back, this time with valentines arts and crafts at the ready.  Lucas decided to make a card that says “I love Caterpillar” while his cousins made a mess of our house – all in good fun, of course – and also made a few valentines cards of their own.  A great day all around.

This morning we went to the funeral service of a little girl who touched many, many people in her three years of life.  Lucas and Mari first met last summer through a common therapist.  They hit it off immediately… in their own way.  Both were stubborn as could be and a little reluctant to be surrounded by parents trying to get them to interact.  But eventually they read the Maurice Sendak story Pierre aloud together and repeated the refrain “I don’t care!” will glee.  Later Lucas repeated Mari’s name many times and relayed the fact that she also used a special chair like him.  We heard from Mari’s parents that she would often ask “how’s Wucas?”

The last time Mari and Lucas hung out was at a event with the Reptile Man at our local community center.  Lucas was scared as hell of the snakes, giant turtle, lizards, etc… but Mari had seen it before and bravely rolled up in her wheelchair to touch some of the reptiles.  Lucas, admiring or perhaps envious of Mari’s example, eventually followed suit… and loved it.

Mari was born just a few months after Lucas and had a similar – but also very different – neuromuscular disease.  Spinal Muscular Atrophy (SMA) doesn’t start off nearly as acute as Lucas’s myotubular myopathy, but it is degenerative and the weakening of the muscles is relatively rapid.  Unlike Lucas, who has never expressed any dismay or even acknowledgment of his disease, Mari did not like being disabled.  She was extraordinarily smart and self-reflective and was frankly pissed off that she couldn’t do a lot of what other kids do.  We didn’t get to know her that well but her feisty personality is totally unforgettable.

We both cried a lot at Mari’s service, mostly because it was a sad but also deeply moving to hear about a little girl who had such an amazing impact in her short life.  We also cried because we imagined that it could have been Lucas.  Last November it almost was Lucas.  And we couldn’t help but feel ourselves there in Mari’s parents seat.

For a variety of reasons we decided not to bring Lucas to the service.  He stayed home with a nurse, and when I (Burke) got home and Lucas was waking up from his nap, I shared with him the bookmark with Mari’s picture and a quote, something she said shortly before she died: “I want to be a butterfly, and fly into the sky, won’t that be nice.”  I tried to explain that he wouldn’t get to see Mari again, that she had gone away, far far away.  He grasped the picture in his hands, stared at it for a while and then finally said “put it on the wall.”  So we did.

Here’s Mari’s obituary in the Seattle Times:

Marielle Haley Scott, beloved daughter of Jamie and Maya Scott, died January 17, 2013 surrounded by her parents and grandparents. Mari came into this world on a cold clear day in Oakland CA on December 7, 2009. She was beautiful and perfect and had a spirit that drew people to her from day one! Mari was diagnosed with Spinal Muscular Atrophy at six months. Mari loved sunsets, which she referred to as “hallelujah skies”. She loved books, bunnies, tea parties, Cinderella, and her service dog “Kudo”. Her dreams were to be a ballerina and to ride a yellow skateboard someday. We picture her in heaven zooming down the streets wearing a tutu and riding a skateboard. Mari leaves many who mourn her passing: grand-parents David and Mary Ellen Haley and James and Marilyn Scott, great grand-parents Gene and Clarice Slade, aunts, uncles, cousins, and friends throughout the world!