Lucas Camilo

This week marks two significant anniversaries for federal legislation that has ended up being important for our family, as well as for millions of other people in this country.

Today is the 50th anniversary of Medicare and Medicaid being signed into law. Since part of what I do for my job is fighting to protect and expand these programs, I put together a press release that includes quotes from people around the country who I work with and who have benefited from Medicare and/or Medicaid.  You can check it out here… and while you’re at it, write your Members of Congress about why these programs are so important!

For Lucas, the impact of the Americans With Disabilities Act is even more profound. There hasn’t been a lot of talk about it in the news, but last Sunday was the 25th anniversary of the signing of the ADA. It’s a momentous occasion, a time to celebrate the social movement that won the legislation and what it has meant for people with disabilities like Lucas. Hopefully the 25th anniversary means people have a chance to absorb some history and current reflections on the ADA and its significance.

Like any social justice victory in our country, the ADA was won because of a movement— activists and organizers with disabilities who conceived of the legislation and fought for years to pass it despite resistance in Congress and opposition from some religious groups and business interests.  One of the more powerful and influential actions leading up to the 1990 vote in Congress was the Capital Crawl in which many disabled activists “shed their crutches, wheelchairs, powerchairs and other assistive devices, and immediately proceeded to crawl and pull their bodies up all 100 of the Capitol’s front steps, without warning.”**

Here’s an powerful short clip about that moment:

The Department of Labor has an amazing timeline called “Advancing Equal Access to Opportunity” that goes from the 1920 through the passing of the ADA in 1990 and right up to present time.  Check it out here.

In terms of some good reflections about the successes and shortcomings of the ADA looking back 25 years, this piece on NPR was quite good.

And this op-ed in Sunday’s NYTimes. As the author says, “The A.D.A. is about more than ramps and Braille; it’s about dispelling stereotypes, ensuring parity and fairness, creating opportunities and opening up our society to the full spectrum of types and needs. It’s about accepting, even welcoming, a huge and often marginalized segment of the population.”

We can only imagine how much more difficult and isolated our lives would be without the ADA.  And yet our experience in Vancouver B.C. a few weeks ago also demonstrated to us how a place can be that much more accessible and friendly to people with disabilities than most of the cities in this country.  We’ve still got a long ways to go.

**Here’s the full description of the Capital Crawl action from Wikipedia:

“Shortly before the act was passed, disability rights activists with physical disabilities coalesced in front of the Capitol Building, shed their crutches, wheelchairs, powerchairs and other assistive devices, and immediately proceeded to crawl and pull their bodies up all 100 of the Capitol’s front steps, without warning. As the activists did so, many of them chanted “ADA now,” and “Vote. Now,” Some activists who remained at the bottom of the steps held signs and yelled words of encouragement at the “Capitol Crawlers.” Jennifer Keelan, a second grader with cerebral palsy, was videotaped as she pulled herself up the steps, using mostly her hands and arms, saying “I’ll take all night if I have to.” This direct action is reported to have “inconvenienced” several senators and to have pushed them to approve the act. While there are those who do not attribute much overall importance to this action, the “Capitol Crawl” of 1990 is seen by many present-day disability activists in the United States as being the single action most responsible for “forcing” the ADA into law.”

Someone recently told us that once you have kids, you don’t say “vacation” any more.  Instead you say “we’re going on a trip.”  Which is still not an adequate way of describing our mode of travel, with so many pieces of equipment, including life-sustaining devices for Lucas that we absolutely can not forget, plus a lot of other equipment like a high powered blender and feeding tubes, and now baby equipment like toys and strollers and blankets… and of course the baby herself!  Anyway, even if our travel is uniquely heavy, it still felt helpful to hear that we’re not the only parents who come home needing a rest after a “vacation.”

So last week we took our first 4-person summer family trip to Vancouver B.C., followed by a few days on Whidbey Island.  It was epic and exciting and often a lot of fun for all of us.  It was also noteworthy in that neither of us parents had left the country in more than 5 years.  So even though we only drove a few hundred miles to do it, crossing a border felt like a big deal.

Our plan was to go to the Vancouver Folk Festival because we had heard it was extremely accessible and welcoming t0 people with disabilties.  Originally we thought we’d go for four or five nights, but by the time we learned that I never hit the “confirm” button when I made the reservations, all the city’s hotels were booked.  In our pre-Lucas days, we would have decided to crash on friends of friends couches, but with all our needs, that option is not so easy.  In fact, we tried to make that option work, and we owe a huge thank you to those who connected us with the amazingly generous Vancouverites who were going to make their homes available to us, even with all our varied and specific needs.  (I actually talked with a woman – who only knew us as friends of friends of friends – who offered us the entire first floor of her house and told us we could use her kitchen and her Vitamix to make Lucas’s food.  Amazing!)

We ended up condensing the Vancouver leg of our trip to two and a half packed days in what felt like an incredibly accessible city.  While we were heading north on I-5 it occurred to us to check to see if the Vancouver Science World had dinosaurs.  And the travel gods smiled at us!  There was a special exhibit called “Ultimate Dinosaurs” featuring fossils of rare, South American dinosaurs (you know, like Giganotosaurus, Suchomimus, Ouranosaurus, etc.)  Needless to say, Lucas was thrilled.  Possibly his favorite part was the realistic looking movies of dinosaurs projected onto the walls — it looked like an enormous dinosaur might step off the wall and onto our heads.  We also met some Canadian five-year-old dinosaur experts who were just as nerdy and obsessed with dinosaurs as Lucas, AND pronounced their names with a cool accent.

We stayed at the University of British Columbia campus, which had many things we needed: elevators and wheelchair accessible rooms, full kitchens, a pretty campus, and close proximity to the festival.  On Friday we had a whole morning to fill before the festival started, so we found an accessible hike.  Part of accessibility is flatness and surface, but for us a big piece of accessibility is information — the more information we can have before we get somewhere, the easier it is to know whether we should make the trip.  We found lots of accessibility information, including an accessible trail just five minutes from where we were staying.  It was a lovely walk – with good spiders and trees and potato bugs.   And then at the trail head we found a poster for the Mobility Opportunity Society — a group that has volunteers take wheelchair users out on inaccessible hikes in this amazing one-wheeled hiking/beach chair.  Just as we were admiring their poster and mural (which you can see in our pictures above), a woman chair-user with two volunteers came rolling up the trail.  We got so excited we started planning our next trip to Vancouver on the spot.  And like many accessible things we find to do, Burke and I were more excited than Lucas.

The other main highlight of Vancouver was the Folk Festival.  We went because we watched this video about accessibility and got really excited about taking Lucas to a place that was so welcoming.  And indeed, the festival’s access team lived up to its promises.  We got special parking and a special entrance gate (i.e. no lines).  There were volunteers everywhere in the blue “Access Team” t-shirts offering help to anyone who needed it.  When Lucas’s vent battery stopped working we went to the Access Tent and lots of volunteers helped us get the tools we needed to fix it.  And in front of every stage, a piece of prime, shaded seating was designated for people with disabilities.  When the blue shirted people would see us coming, they’d clear people out of our way and ask us if they could help us.  At one point Lucas was enjoying watching a guitar and accordion duo, and people started dancing in front of us.  A volunteer walked up and asked them to please move so Lucas (and the other wheelchair users in the area) could see, and I almost cried.

We talked with another family who has been bringing their daughter with a disability to the festival for 23 years.  They say its the first place she was treated like royalty.  And while that might be slightly overstating our experience, certainly the most moving part of the festival for me was being in a culture that is so welcoming for people with disabilities. The non-disabled festival goers probably miss these details — they probably just come for the music and perhaps notice that there are more wheelchairs than your average event.  But to me it felt so good to be in a place where people were not just willing to do what we needed, but went out of their way to predict access needs and make everyone comfortable and welcome.  It felt like a small glimpse into the future I want to live in.

And of course there was great music!  But the truth is that we enjoyed the music more than Lucas.  If you ask him about the festival, he’ll tell you we played a lot of our new favorite game, “What Dinosaur am I?”

Did we mention Ida was there too?  She remains the most easy-going, happy baby, willing to go where ever the rest of us are headed.  She did discover two new passions in Vancouver: grabbing her feet and playing with Lucas’s vent tubes.  Fortunately both go with us everywhere we go.  She also loved smiling and then playing coy with anyone we sat down next to at the festival.

We left Vancouver on Saturday and headed for Whidbey Island.  And this is where the trip (the “vacation”) started to unravel, as we had to deal with an hour wait to cross the border, then traveling until we could go no further.  Which meant that all at once Burke and I were hot and tired and hungry, Lucas needed to lie down and have his needs met (food, brace off, diaper change, grass for his hungry dinosaur) and Ida needed to stretch so we made a pit stop in Bellingham.  Burke and I got grumpy, bickered and wondered whose bright idea this whole “going on a trip” thing was anyway.  When we were 20 minutes away from Burke’s parents’ place on Whidbey Island, five hours after departing Vancouver, Ida hit her limit.  For the first time maybe ever (sorry to the parents whose kids hate car seats), she wailed and screamed and cried a heartbreaking cry.

But we made it.  And our two days on Whidbey Island were beautiful, with lots of quality time with cousins, Nonna and Papa, Aunt Ashley and Uncle Brandon, and lots of swimming in the unusually warm Puget Sound.  We felt extremely grateful and fortunate to have access to this beautiful place of Burke’s parents on Whidbey (complete with a newly constructed wheelchair ramp!) to make our summer getaway a little longer.  Oh yeah, and next summer our dream is to up the ante by renting a wheelchair accessible RV and taking a two week road trip through the Rockies… stay tuned.

We’ve been quiet on the blog for a few weeks, but not for lack of activity.  It has been so helpful to have the showering of support from our family and friends related to our last post — here on the blog, in calls and conversations.  So before anything else, thank you.  I can’t find words to express how important your love and support is to us.

It was surprising how relieving it was to actually publish that last blog.  Saying it in writing — that this path for Ida will be unique and hard and beautiful in ways we hadn’t imagined — helped us acknowledge even to ourselves that this is real, and somehow that lightened the load a bit.

And the reality remains that right now Ida is doing great, and that she – like her brother – is a huge joy.  And over the last few weeks we’ve had some really fun times.  The first day of summer vacation Ida and I flew to Philadelphia to meet our friends’ Sha and Matt’s new baby, Tighe.  At home, Lucas and Burke got a lot of time together and celebrated Father’s Day in our backyard with the rest of the Stansbury crowd.  Lucas attended his first week of camp at the Children’s Playgarden, playing with geese and ducks and doing garden crafts and generally having a great time, despite the paucity of dinosaurs.

And then we took the whole family up to Nonna and Papa’s place on Whidbey Island to escape a little of the Seattle heat.  Lucas had a blast cruising up and down the newly constructed ramp and playing with his cousins, while Ida learned about reading (and eating) books.  Lucas got sick when we got back to Seattle on Monday, but he’s been an incredible trooper dealing with a cold and even a fever in the serious heat that we’re enduring.

On Lucas’s good days, we’ve spent a lot of time at the lake.  The water is so warm that Ida even agreed to go in last week.  And today we celebrated (Burke’s birthday) by getting out early for a walk and spin around the merry-go-round at Seward Park.  We are so very blessed by these two kids.