What’s a little loneliness?

Listen to this post: 

I don’t really talk about rehab on this blog, but this popped into my mind today.

There was a time when I couldn’t get places very well unless you gave me a car ride there. Between getting on the wrong bus, getting off at the wrong stop, tripping over leaves and other–at the time–seemingly giant hazards, and yelling at people on the bus with me, it was not a good choice. I’d arrive at rehab exhausted, angry, and spent. Before I got onto paratransit, though, how else was I supposed to get to rehab? (Never thought of taxis at the time, in case you’re wondering.)

But here’s the other side: people watching. I wasn’t much interested in the demands of socializing, and I got plenty of feedback that I was terrible at it anyway. What with the closing my eyes and the not talking and the getting lost when you talked to me. So I enjoyed the people watching from the waiting rooms. Change was something I feared at the time, but one place where it was good was in picking where to sit to watch the people before and after rehab. I might sit in different spots in the waiting room. I even got bold a couple times and sat in the main atrium of the building or by the front door, in a nook that filled uncomfortably with rushes of air every time the sliding doors opened. I loved watching the people. Being in the vicinity of them satisfied my social needs and gave me a reason to look forward to going to the clinic. Sitting on the bus near them was horrible, what with their breathing and moving and talking and flicking around on their devices and the energy buzzing off their bodies so close to me. But in the expanse of an office building, everyone in their own bubble, it was great.

So imagine my horror when one of my rehab clinicians suggested I apply for home health so that I could take a break from the bus commuting and focus my energy during rehab time on actual rehabbing.

Part of me was annoyed. I suspected I wasn’t impaired enough to qualify. Part of me was terrified of speaking to strangers on the phone and having to keep up with what they said and then filing their confusing paperwork. But the biggest part of me was betrayed and indescribably sad at the thought of missing my main form of social contact. I screamed in protest, and she responded that she had assumed I would have preferred home health since commuting was such a painful drain on me. She apologized. We dropped it. I probably never explained to her why I refused home health. I was embarrassed to tell her I had almost no social life anymore and even more embarrassed to tell her that people watching was fulfilling to me.

If you initially wondered why I didn’t take taxis back then, you might also wonder why I didn’t accept home health and then go people watching at the mall or the park or a coffee shop. Never thought of it till just now as I wrote this, actually. That’s how inflexible and uncreative the injured brain can be. If people watching occurs at rehab, then that’s what people watching is. End of story. All I thought of at the time was that she was going to take away my one out-of-the-house pleasure. That she wanted me to stop bothering the staff with my crying and my exhaustion. That she thought I was a failure at bus-riding and rehabbing. That I wasn’t worth being part of society. And that no one would miss me. While I see what distortions those are now that my mind is more flexible again, there’s one thing I still know is true: taking away my one motivation to leave the house would have led to even more isolation, which can create quite a lot of loneliness for many people.

Loneliness doesn’t just happen to disabled people. The Jo Cox Commission on Loneliness has been looking at how this issue plays out for different types of people and at creating social actions to combat loneliness. The UK charity Sense partnered with the commission on a study specifically around disability, and more than 20 other charities contributed to a report. There’s even a section on brain injury and the organization Headway, which produces some of the finest TBI oral histories I’ve found online.

MP Rachel Reeves, who co-chairs the commission said this: “Many of the barriers to building social connections for disabled people are practical ones, such as the need for accessible transport and buildings, financial support and appropriate social care; but public attitudes also play a part in the risk of loneliness for people with disability.”

This last one is key because we do have so many dangerous and damning stereotypes about disabled people’s wants and needs, and much of the public discourse is still driven by what non-disabled people think disability community should be doing and thinking. I’m grateful for this report, which collected tons of personal narrative from actually disabled people. It complements the multitude of disabled-created content already available online very well.

You can check out a pdf or Word version of the commission’s report here.

I’m not a supporter of things like the condescending and saccharine “Just Say Hi” campaign. It’s meant to ease non-disabled people’s awkwardness around their assumptions that we’d benefit from them approaching us simply because we look crippled and just saying, “Hi!” The assumption that all of us uphold non-disabled people’s social overtures as the best kind, and the breaking of social norms that we are not really allowed to break here are just too much. But many of us are lonely. That part is real. It’s that you maybe shouldn’t target disabled people like this or attempt to save us with your do-gooding. Some of us don’t look disabled and are lonely. Some of us look disabled and aren’t lonely. Some of us want to people watch and not be expected to make a new friend today or might prefer to be the one to start the conversation or choose the person to approach and when.

Although I can keep up with many conversations a lot of the time now, I still self-isolate a ton to renew and refresh myself. I’m not even a total extrovert, so I love to time alone. But adding onto my partial introversion the way I get overstimulated with noise and visual input and how my spoon drawer can empty on a moment’s notice, my down time is part of my health. But when I do start to feel lonely, I am deeply appreciative that I have people I can reach out to in person, by phone, or (my favorite way) online. Not everyone has those options, and that, not disability itself, is the tragedy.