Foss on a Boat

My brother, Foss, turned 12 years old today. Already he’s a pretty standard 12 year old: he’s loud, energetic, well-meaning, and annoys me a lot. However, Foss also requires constant attention, special planning, and a lot of patience (which, now that I think of it, are qualities that could fall under the most 12 year olds umbrella) because of his cerebral palsy, spastic quadriplegia, and his, well, blindness, which was all caused by a seizure he had when he was 3 days old. That part’s not really typical of most 12 year olds. In addition to being blind and stuff Foss is also…

• Nonverbal! (So I can’t interview him)
• Nonambulatory!
• “Developmentally delayed!” (Which means that he has a bunch of learning disabilities)
• Missing a kidney! (That isn’t related at all to the seizure but it’s just a fun little bit of Foss-trivia.)

At least, I think that’s what he has. My mom is more qualified to talk about Foss than I am because she’s his mom and, unlike me, has a speech rehearsed for whenever a doctor asks what his disabilities are. So I’m interviewing her for my essay! In addition to having a speech ready for doctors and nosy parents at my band recitals, my Mom (who’s named Molly but it’s weird talking about her like she’s a random person I’m interviewing so I’ll just call her “Mom”) is patient, good at problem solving, and works very hard at taking care of her children (like most parents of disabled kids tend to be) and if you think I’m a kiss-up mama's boy we have to describe our interviewee to get full credit on this essay so I'm not and you’re wrong for thinking that. The Mom in question (my Mom) is blonde, maybe above average height(?),  dresses like she’s trying to look respectable but not like someone’s mom, and must be pretty strong if she pushes Foss around everywhere in a wheelchair and lifts him in and out of the bed and stuff. As I’m interviewing her at 9:30 on a Sunday night she looks more like she wants to go to sleep than patient and good at problem solving. And she looks more like a mom than usual: a little worn-out and in drool caked holiday pajamas. But I guess it says something about her character that she’s willing to be interviewed about her disabled son by her less disabled son after a long weekend of worrying about both her semi-disabled children all day. She doesn’t look very enabled right now.

Anyway, back to Foss- we love him, but on Sunday nights when some of us just want to be alone and read or go on expensive vacations that don’t feel like that much of a break he can be a bit of a handful. Mom helps us imagine how vacations typically go: No flying with Foss (his wheelchair would get damaged and Foss wouldn’t be able to sit in a plane seat for hours on end anyway), long road trips are a pain (when he has to go to the bathroom, we have a time bomb in our car that can only be diffused by a rest stop with a diaper changing station), and places with swimming, amusement park rides, or long uphill walks become minefields of crying (from Foss, not his caretaker (most of the time)), wheelchair lifts under maintenance, soiled diapers in the pool, and twisted ankles. Old tourist traps without elevators suddenly become inaccessible- it’s not uncommon that a tribute will be made and an adult will be left behind to deal for a few hours while everyone else in the party embarks on an activity.

“What’s a vacation that doesn’t require flying, a long road trip, swimming, joy, amusement park rides, happiness, or long uphill walks?” Has been a recurring question summer after summer. A year ago we found the answer to the age old question and last summer (the summer of 2019), we finally tried it out: a cruise to Alaska (and back)! It was perfect: we could hang out on a boat with elevators and not have to make food and then go on “excursions” in teams: us doing the more physical stuff like hiking and ziplining and Foss and his caretaker doing the less physical stuff like petting otter pelts, and learning about Alaskan eskimo street culture.

The Seattle to Alaska cruise we took was really fun (it was everyone’s first time going) and it’s a pretty easy cruise to do if you live near Seattle and are willing to pay for it. Alaska is really pretty in the summer. As a scenic, relaxing trip to a bunch of smaller, touristy cities it naturally draws in a lot of old folks. We had our fair share of encounters with weird old people throughout the duration of the trip (there were plenty of rednecks, raconteurs, and lost senior citizens who couldn’t figure out how the elevators worked) but one sighting was particularly strange.

Part-way through the cruise when Mom was out on one of the main decks with Foss hanging out and looking at the glaciers (well, Mom was looking at the glaciers at least) a little old hispanic lady ran up to Mom and Foss and started speaking Spanish really fast and touching Foss and praying and stuff. Mom is smiling a little as she tells me this.

“She seemed like she was deeply religious and like she was, you know, probably coming from a good place,” Mom says. She’s wasn’t shaken up or creeped out when it happened and doesn’t look like she is now. “I think maybe she thought she had some sort of power to positively influence the course of his life or his health- I don't know. But it bothered me because I don't think she would have done- I mean, she didn't do that to you.”

Mom didn’t pry the lady off Foss or anything and when she was done with her ritual or exorcism or whatever she was doing the lady just kind of walked away without saying anything to mom. Mom makes the whole thing sound kind of normal. Maybe she’s just used to it.

The lady wasn’t thinking about Mom or even Foss, really, when she tried to cure him or whatever. She wasn’t thinking about whether or not Foss wanted to be touched by a random person, about whether or not a god was part of their religion or if they were even religious and she was deeply offending them- she wasn’t, but it’s still the principle of the thing. You should ask before you get all touchy-feely with someone (that doesn’t really make it less weird but at least you’re being polite), no matter how much you think they’re capable of understanding it. Foss wasn’t able to respond and say “Get your hands off me, old witch,” and he probably wasn’t really sure what was going on, but not being able to see the person touching you isn’t really a better experience.

“She was making assumptions. And when you assume you make an ass out of you and me.” Did that lady think Foss was sick and to be pitied or a disease that needed to be cured? I don’t think she was really thinking about him like another person. And she definitely wasn’t thinking about how Mom felt. (Uncomfortable and a little annoyed.) “And I also sort of took personal offense to what she was doing” ... ”it just kind of seems to suggest like, as if I haven't been doing everything I can for the last 12 years to help him to be as independent and strong as he could possibly be.”

​Mom has told this story two or three times (as far as I know) to various caretakers and friends we happened to see in the weeks after the cruise. Friends say how awkward that must have been, how they would feel if someone touched their baby, and anyone who’s actually taken care of Foss for an extended amount of time gives a knowing look. Foss tends to be pretty difficult, but encounters with weird old religious people and looks from bystanders in the supermarket when he’s crying for the eighth time in one day aren’t helpful, either.

​The world is full of so many different types of people yet a lot of people still feel uncomfortable around disabilities, like they shouldn’t be making eye contact with and pitying people with them- I mean, it’s a little hard to get used to, but it’s not that weird. It’s weird that you’re judging us. You’re weird. Do you think you owe Foss something? Here Mom’s inner New Yorker comes out: “It's kind of like, Oh, you think you're better than me?”