Lucas Camilo

An op-ed that Krista wrote in support of the Domestic Workers Bill of Rights was published in the Seattle Times this weekend. She’s gotten great feedback on it (notwithstanding the usual haters on the Seattle Times website) and it’s amazing to hear how many people have stories of their own about the importance of home nurses, caregivers, and other domestic workers. (And its also amazing how many people still read the Seattle Times in print.)

Lucas is taking it all in stride, of course. He reminds everyone that he was already famous, and in fact this is the third time he’s had his photo and story in the Seattle Times; the first time was for a story about the Affordable Care Act and people who have benefited, and the second time a “one-year later” follow up to the first. The other night he said matter-of-factly “people probably even know about me in other countries now.” All of this was a good distraction since Lucas has been sick for the past week and even had to miss school for the last few days of the year.

We finally got him off the couch on Sunday and went down to check out the Arctic Sunrise, the Greenpeace boat docked in Lake Union. Since the tour wasn’t accessible for people in wheelchairs they had a virtual reality station set up — and Lucas loved it! He now wants to do VR all the time.

Anyway, if you’re interested in the campaign for a Domestic Workers Bill of Rights you can learn more from the organization Casa Latina and sign this petition.

Here’s the Seattle Times Op-ed:

A Domestic Workers’ Bill of Rights and a standards board would ensure domestic workers in Seattle have the protections and pay that many workers enjoy.

By Krista Hanson

Special to The Times

For the last eight and a half years, my partner, Burke Stansbury, and I have hired home nurses to care for our son, Lucas, who has significant medical-care needs due to his disability. We also are parents to one other child. My partner and I are only able to keep regular jobs, sleep and take care of our children as well as we do because of all the help we get from our son’s nurses, Katharine, Alisha and Mark.

Our nurses are in our home six days a week. They help Lucas get dressed, provide medical care and help him into his wheelchair. Then, they ride the bus to school with him. All day long they attend to his medical needs, including keeping him fed and hydrated through his tube feeding system and assuring his airway is clear. and his ventilator is functioning properly. In the afternoon, they ride the school bus home with him and continue his medical care while also setting up his personalized computer system so he can do his homework.

We also are fortunate to have someone who comes two mornings a month to clean our house. While we live in Seattle’s Mount Baker neighborhood, our house cleaner works for families all over King County.

As a parent, worker and an employer of domestic workers, I support Seattle’s Domestic Workers’ Bill of Rights. I believe that workers in the home deserve dignity and respect for the role they

Having people work in our home, especially our nurses doing such intimate and life-sustaining work, has made me deeply aware of our interdependence. Before we had kids, Burke and I imagined living in an intentional community with other families, so that our kids would have close relationships with lots of adults. Although we haven’t been able to do that, I sometimes see our relationships with our nurses as another kind of intentional community. Though it’s forced, these relationships are also beautiful. A Domestic Workers’ Bill of Rights in Seattle would help ensure that the employer-worker relationship is beautiful — or at the very least fair and just — for all workers and employers.

Too often domestic workers face discrimination and abuse in the workplace, and that can lead to poor quality of care for our loved ones — people like my son. The Domestic Workers’ Bill of Rights and a standards board would ensure that domestic workers such as nannies, house cleaners, home care workers, gardeners, cooks and household managers have the protections most workers already have.

The legislation introduced Thursday by Seattle City Councilmember Teresa Mosqueda would require employers and domestic workers to have a written contract, and the city would convene a standards board — with employees and employers at the table — to determine industry standards like pay, overtime, breaks, etc.

A Bill of Rights would help all domestic workers ensure that they are treated with dignity, and they would help ensure high-quality care for those we love most — our kids, parents and grandparents.

My family is so fortunate to have home nurses helping us raise our self-confident, curious, hilarious kid — who happens to have a disability that radically alters the ways he can move and interact with the world. We literally couldn’t live the full lives that we get to live — with quality and meaningful relationships for each of us as parents, and for each of our kids — without our nurses. We are so deeply grateful for their work, both in taking care of him medically and for helping him grow into the beautiful, confident kid he has become.

When I see the respect with which Katharine, Alisha and Mark treat my son, I truly experience the value of care in the home. It reinforces my desire to ensure that all domestic workers are acknowledged for the powerful contribution they make to our families and communities. A Domestic Workers’ Bill of Rights would help make that a reality.

 

Krista Hanson is a Seattle parent, yoga teacher and advocate who works to support families of children with disabilities and chronic health conditions.

Lucas’s 3rd grade school year is coming to a close… which means coming up with lots of summer adventures that will get us out of the house. This is both a blessing and a curse for our family. On one hand, when we come up with brilliant ideas for accessible destinations — like visiting the Point Defiance Zoo and Aquarium in Tacoma a couple weeks ago — and Lucas goes along with it, we can have a glorious time, and forget for a moment all the challenges of having a kid in a wheelchair attached to a ventilator. But then there are those times when the ideas aren’t so brilliant, or it doesn’t matter anyway because Lucas isn’t having it. This is one of our big summer challenges.

We’ve written before about how Lucas can sometimes be a grumpy homebody, refusing to leave the house or do much of anything other than engage with his iPad. We even have a name for this mood: “curmudgeon Lucas.” You can often tell first thing in the morning if we’ve woken up with “fun Lucas” or “curmudgeon Lucas”, and if its the latter you know its going to be a long day. And I get it — being totally dependent on your parents and caregivers for everything you need and every activity you engage in (except for the iPad) would get really old. Amazingly, Lucas never expresses explicit frustration or resentment about his disability. In fact, when we ask him if something is hard — like recently when we were at a park and kids kept coming up, staring, and saying repeatedly, “what’s wrong with him?” — he always defers, saying its no big deal. He even dutifully responds to one kid after another, “I have myotubular myopathy or MTM. I need to vent to help me breathe and talk.”

So maybe “curmudgeon Lucas” is his way of expressing frustration with having to deal with so much bullshit that the rest of us don’t have to deal with. Still, it can be rather exasperating to be on the other end of it, especially when its a beautiful spring day outside and all I want to do is take a 20 minute walk to the park. And the whole time I’m getting him ready he just says “I don’t want to go to the park, I don’t want to do anything!”… but we make it anyway, and then the whole time we’re there he says “I want to go home now, I just want to go hooommmme.”

The upshot is that when “fun Lucas” shows up (or “curmudgeon Lucas” magically transforms into “fun Lucas”) it can be truly wonderful. Such was the case a few weeks ago for the trip to the beautiful Zoo/Aquarium at Point Defiance, about 40 minutes from our home. A few days before Lucas had been watching his favorite nature series (Planet Earth, narrated by David Attenborough) and there was an episode that featured gibbons. Lucas’s face lit up watching these monkey-like creatures swing around on the vines, especially when they let out their warning cry, which he started imitating around the clock (“mmuuwuhhhaaa!”) Then we found out that there were gibbons at Point Defiance, and our Sunday plans were solidified. We ended up spending 4 hours there and Lucas didn’t complain or ask to go home once. At the end of the day he said with a smirk, “this is one of the few adventures that I do like!”

Another such case involved a trip this last weekend to Inspiration Playground in Bellevue, a remarkable accessible park that we had been to a few times before. Lucas complained about going the whole morning, but once we were there he didn’t want to leave. There’s a trampoline that you can basically drive a wheelchair right onto (with a slight lift) and as he bounced up and down Lucas exclaimed, “I… want… to… do… this… FOREVER!” (See pictures below.) Eventually other kids needed a chance so we explored other accessible features of the playground, while Ida got soaked in the fountain and found other fun things to do.

The next morning we were up early (as usual) and the wind was blowing so we headed up to Jefferson Park on Beacon Hill with a couple of kites. Once again Lucas was ecstatic as we watched the Sea Turtle and Poison Dart Frog Kites ride the wind. Though as you can see from the pictures, I’m a sucker for kites and was clearly happier than both of our kids.

There’s a lot more to say in another blog post about Lucas and Ida’s blossoming relationship, but one more story for now. Yesterday after school Lucas was tired and having trouble figuring out what to do. Ida grabbed the aforementioned iPad and brought it over to him. “How ’bout a little iPad Lucas?” she said, proud that she was undermining our efforts to avoid the default activity. “Thanks Ida,” he said, “but I’ve already had enough screen time today.” You gotta love this kid.