I have to admit that The Sign for Home wasn't a novel I got really into. It still felt worth finishing, because while I felt the story line needed some work, it raised topics I found interesting:
When are we controlling someone else because of our inability to deal with our own emotions?
How do we make sure we're empowering, rather than controlling?
How do we tell the difference between protecting and harming?
How can we balance practical limitations with the need to allow someone to make their own choices?
How does a relationship develop when we view help as flowing in only one direction?
How does one balance our duties and responsibilities with our relationships, personal needs, and personal values?
These aren’t the kind of questions we can answer once. We have to keep asking ourselves these things throughout our lifetime, in each relationship where we’re providing care. It’s so easy to get swept up in carrying out doctor’s orders or doing what we think is best, which has always led me to actions that I regret.
I rarely think of my time at the Rochester Institute of Technology, home to the National Technical Institute for the Deaf. Reading The Sign for Home and being privy to the interpreter's anxiety about working with a DeafBlind consumer reminded me of my own anxiety before moving to Rochester. How would it be sharing a campus and a city with so many Deaf people?
I followed their lead and paid attention to what other hearing people were doing, quickly determining it was a non-issue. It made perfect sense to me that the Deaf kids tended to hang out together outside of class, since it must be great to be surrounded by a community of people from your culture. I developed a vague awareness of Deaf culture in the short time I spent in Rochester before dropping out of RIT. Mostly, though, I learned to dumpster dive and spent my time making cryptic interactive art installations with my hearing roommates.
Perhaps it's this very specific experience of Deafness that left me with the impression that being Deaf is a different category of disability. It's like how wearing glasses and having certain common vision problems isn't considered a disability, even though it obviously is, because it's so easily managed. Only people who wear glasses don't have a culture. They don't have their own languages, architecture, art, and social norms.
I’d taken it for granted that the Deaf people I’ve encountered were all fluent in English and often could read lips, even when they weren’t from the US. I have no memory of what accommodations there were for the Deaf student I went to elementary, middle, and high school with, who I’m pretty sure I only remember because he was a soccer star and we both started RIT in the same quarter. When I think of Helen Keller I think of how her story has been transformed from that of a radical into inspiration porn, not about her struggle to communicate. To be Deaf was to have access to a rich world of experiences I didn't understand, but could enter into if I put in the effort. I hadn’t spent much, or any, time considering the challenges of being unable to hear in a world built for the hearing.
The plot of The Sign for Home twists around Arlo's discovery of, and restricted access to, Deaf and DeafBlind culture. Arlo’s life as a sheltered DeafBlind young man looked very different from the lives of the people I know, since he lacked access to appropriate tools, training, and support. The novel aims to highlight the importance of disability justice and the need to empower, not patronize.
The story was also reminder of the way a disability can be transformed into a doorway into belonging made me deeply sad for people who lose the ability to hear as adults and remain outside of the Deaf world. And of course. To become deaf is so different than to be born into it. You’re an immigrant to another culture and, in many ways, cast out of your own.
Seeing people cope with hearing loss makes our internalized ableism clear. There's so much shame around not being able to hear or using hearing aids. I think of all the people who withdraw socially because it's too difficult for them to understand spoken speech. There's also the incredible expense of hearing aids and the fact that they aren't always helpful. There’s a lot of small adjustments we can all make to be more welcoming to people with hearing loss, yet we don’t always know what they are or when they’re needed. And not everyone is interested in making those adjustments.
Embracing an identity changes things in very real ways. When people resist the reality of their abilities, they miss out. Not joining a community of people with similar needs means they're cut off from access to the wisdom of those who've dealt with the problems they're facing. Some people resist using the adaptive devices and techniques available to them in order to keep their level of abilities a secret or because their self worth is tied to their ability to perform certain tasks. Losing the ability to hear clearly as an adult is such a major life change, my heart breaks thinking back to relatives who did all they could to hide and ignore it.
The biggest takeaway from the book is the reminder that, ultimately, people with disabilities don’t need to be guided to the right choices. They need to be empowered to make their own choices and be part of a culture where they can thrive.
It’s been almost a year since I last matched people for group chats! If you sign up, I’ll introduce you to four to six other people with caregiving experience over email or in a WhatsApp group. I’ll follow up with a couple weeks of prompts and nudges to get things started and then set you free. Interested? Sign up to join a group using Typeform.
I found Mari Andrew's advice on making friends particularly insightful and actionable, even if you can't currently pick up a job in a restaurant.
Who decided dancing is only for the young and able? I love the way dancing and Dance Church are discussed in Essential Labor. My dancing inspirations are my mom, who is out dancing at the same concerts as my friends, and my former professor, McKenzie Wark, who is out there raving. My favorite party is The Get Down, which is all ages/all bodies, alcohol optional, creep free, and starts early enough so I can be in bed by midnight. Another excellent option is Ecstatic Dance. Dance is also not just for the hearing.
Want to watch movies without subscribing to a bunch of streaming services? Here are some options for free, legal movies on YouTube.
We should all have the right to survive failure.
Nancy Folbre discusses how care work intersects with class.
People are gushing about I Didn't See You There, available to stream on PBS in the US.
The US has increased the limit for ABLE accounts, which allow people to have savings without losing access to benefits.
Out of context Heather Havrielsky quote of the week:
“the best possible way to prepare for that future is to learn how to live right here, right now. I have to welcome the small challenges of this hour instead of experiencing them as oppressive or revisiting the unresolved big-picture questions over and over again.”