People Are Different

Even disabled people! From each other! Who knew?

The view from the back deck of my family's beach house.

So this will be a quick post in-between our travel (yes, we’re traveling agin, but WAY less than this time last year, mostly because we are no longer being subsidized by various academic fellowships and research grants). We just got back from a week at my family’s sort-of-inaccessible house in Rhode Island, where I actually did NOT stay. I stayed next door. More about that in a minute. Now we are home for a day (yesterday) and today we are about to go to the airport to fly back to San Sebastién and Bilbao, to celebrate Michael’s milestone birthday. We are bringing the three daughters and one husband and one long-time boyfriend and it is a good thing Michael is aging out of milestone birthdays.

So I learned something interesting on this family jag last week, and that is that, apparently, even disabled people are different from each other. I KNOW, right? WTF? I was happily going along assuming that disabled folks, at least those of us using mobility aids and especially those of us using wheelchairs, were basically the same in our needs, which is to say just like me. I seem to be mistaken in this thought, which is so weird because I am never wrong. But here we are.

A little background: About twenty years ago, the house next door to our little house was bought by a couple, and the husband had advanced MS and used a power wheelchair all the time. They tore down the existing house and built new, to create a house that was accessible for him. I did not yet use a wheelchair (I actually had not yet been diagnosed), but as I grew more disabled I would occasionally talk to him about MS, treatments, etc. They lived there year-round, so I often saw him out on the patio when we visited. Maybe five years ago, they upped and sold the house and moved away. The new owner does not have a (visible) disability and is, actually, a surfer. (In Rhode Island, which is a little like being a snow-boarder in Kansas. Sure, there’s an ocean, but are there waves? I would argue, barely.)

So this past week, my sister and her family were visiting from Australia and my aunt was up from North Carolina, and there were, as a result, nine of us. We could not fit all of us into a 600-square-foot house with only two bedrooms and one bathroom. So we talked to the neighbor and borrowed his house (we threw in a case of wine and a cleaning upon our departure). And I and my sister’s family and Michael stayed in the neighbor house. Which, as you’ll recall from the previous paragraph, was built by and for a man who used a wheelchair all the time. So I was excited by the prospect of total accessibility.

Turns out, not so much. This is where I slammed face-first into the reality that apparently my needs and desires for accessibility might be really different than those of other people who use wheelchairs. Don’t get me wrong: the house as a whole was way more perfect for me than our own house (though I love our house way more). The floor plan was open and the main bedroom had an en-suite bathroom. The patio was roll-out and there were no steps into the house. But there were things I was baffled by, and so I want to share them with you.

First, there were no indoor showers. There were two bathrooms, but neither had a shower. In fact, they both had bathtubs! BATHTUBS! Without even handrails or removable shower-heads (the en-suite bathroom tub didn’t even have a shower. WTF?) Now, we are nosy neighbors, so we would definitely have noticed if the new owner had just decided to remove all the showers and put in bathtubs, which is also super unlikely since he uses it as a vacation home, so I can only assume that the owner in a wheelchair opted for this wildly inaccessible feature. Who knows? Maybe his wife was really strong and could lift him in and out of the tub—I am not going to comment on anyone’s preferred way of living. Except to say, dude, no shower at all? C’mon.

Actually, there was one shower, an outdoor, which is my favorite kind of shower at the beach. And it was roll-up and flat and easy for me to use. But get this! The surfer installed it! NOT THE DISABLED GUY! Sorry to shout, but again, am I so very different, or is that unexpected? I mean, I just feel like we should have more in common than the accessibility is suggesting.

I was also struck by the lack of assistance bars around any of the toilets, which means I had to launch myself up using the windowsill and sink. Which was a little scary. But that might have been a choice of the new owner, since disability bars are easy to remove. And then the kitchen. The island had a lowered section (like mine!) for a wheelchair-user to sit and help prep meals. But the island was placed in such a way that I couldn’t sit in my chair and open the refrigerator door. There wasn’t enough room. An interesting choice to make when you’re building a house from the ground up.

Ultimately, I don’t complain in order to throw my fellow MS-er/wheelchair-user under the bus. I do it because I was genuinely surprised and frankly confused. I have leaned into being disabled, needing aids, seeking accessibility and accommodation. I really have! But this house felt like maybe I had misunderstood? I admit that I tend to assume that we disabled folks have pretty similar needs. Maybe we differ in the degree to which we need help or the kinds of accommodation we need, but aren’t there some basics? Doesn’t everyone who uses a wheelchair want a roll-in shower? Doesn’t everyone using an assistive device want to open the refrigerator door?

Am I the weird one?