On Change, Education, and Self-Care

Be the change you want to see in the world.

This is the sort of philosophy I’ve learned to embrace, more and more, as I think about forming the kinds of inclusive spaces and communication styles that matter to me. Engaging with others, talking over topics and issues about deafness and disability, and teaching them more about my worldview (while learning more about theirs) have been at the heart of how I’ve tried to form relationships with various people in the last few years. This has been a core part of my process of self-realization, both professionally and personally: if I want to clear out a space for myself to thrive, in a predominantly hearing world, oftentimes I am the one who is going to have to go out and do that work. It’s advocacy, it’s education, it’s proactivity. Sure, the work is often repetitive and a bit frustrating. But it’s also rewarding, when people respond and engage and learn how to be more inclusive for me and others like me. It helps me feel more like myself, and it helps me feel like I am being more true to myself by allowing the deaf part of my worldview to show, to be present for others to see (rather than hiding it or pretending it doesn’t matter). The often-invisible things need to become visible, in this world.

Another tenet of this reality of constant advocacy, though, is: being any kind of “change in the world,” to cite that high-flown ideal, is exhausting. Answering questions about deafness and ASL, inviting well-meaning but (at least at the beginning) unknowing hearing people into my world, and asserting my rights to gain access are all exhausting. I’ve realized I need to recognize my own energy levels and my own personal limitations, and also realized that to keep going as a scholar and advocate and overall person, attention to self-care is tantamount. The importance of self-care and self-preservation is a topic of discussion that I’ve seen arise among other minority groups. If you are in any kind of minority, what kind of toll does it take to keep asserting yourself and asking for diverse worldviews and also for accommodation from the majority?

I’m not writing this because I’m in a situation of duress right now. I’m really not. In several ways, it’s quite the opposite – as I enter another year of my graduate program, I’ve been excited to see how the promise of planting seeds is starting to pay off. I’ve seen how certain communicative dynamics and accessible spaces are starting to bloom, for me and for others around me. Inclusive communication practices are becoming more routine among the people I see professionally and personally each day. I’m seeing more people start to learn and use ASL around me, and I now recognize that ASL use as an important part of my feeling of belonging in any space. My days of starting from square one with sign (which I experienced when moving to a new place last year, and which I’ve written about before) are mostly over. Thank goodness for that. But I also recognize how much time, how much work, it has taken to get here. The time to plant those seeds, for me, was worth it. But I also find myself reflecting on that time, that energy, that expectation for continual investment and education. What balance am I striking, between what I invest in others and what I reserve for myself?

What I’m getting at here is this: education and awareness are important, when introducing deaf/disability/access issues into any space. These topics about inclusivity and communication and disability are topics I will keep working on for the rest of my life. At the same time, I wonder, who performs that education and that advocacy? Does it always need to be the deaf person, the person with the disability, the person who doesn’t quite fit? Is it really always that person’s responsibility? And, speaking for myself, at what point can I decide to stop and to just leave it to hearing people to go educate themselves?

This question is a tricky one for me. It’s a bit of a conundrum. I’ve recognized that, oftentimes, when I leave it to hearing people to go educate themselves, they don’t. They may not even realize they have to, without me speaking up. Granted, a few rare, special ones will. They’ll recognize problems arising. They’ll go read up on deaf topics for themselves or watch YouTube videos or go take a sign language class. But most people need to be prompted to think in a new way about visual language, about how their own hearing or able-bodied behavior and assumptions promote or preclude access, and so forth. In a way, I don’t blame them: being in the majority conditions certain ways of thinking about what is normal and what is acceptable. Other people’s experiences and realities become invisible within that mainstream assumption of normalcy. It’s like what I experience, as a white person who has simply never had to think about the discrimination that black communities face. (I’m slowly trying to read and think more about varying topics like this, as part of my larger social responsibility to others. But I digress.)

This question of education and personal investment, like so many questions, is about finding balance. It’s also about deciphering and setting boundaries, something I keep talking about with friends in grad school – as my fellow PhD friends talk about a lot, and as I’m also discovering, any line of work or investment will consume your life if you let it. Is it always my responsibility to educate New Hearing Person about communication/sign/inclusivity/access/the ADA/interpreters/what it is like to be deaf/generally how not to be a jerk? Maybe I feel, personally, as if it is. Maybe I don’t. Maybe it depends on the situation: my mood that day, what else I’ve had going on in my life, how worthwhile I feel this relationship is, what kind of response I think I might get in return. But it is also okay to say no and to stop educating, if only to be myself. It’s okay to tell someone, I’m excited you want to learn about this, now here are some books to go read about it instead of asking me. It’s okay to say, I don’t feel like talking about this question with you right now. I am still learning all these things, while thinking about what education and advocacy mean to me.

In other words, sometimes it’s right to go and be the change you want to see in your immediate surroundings. Other times it’s also okay to head outside and take a hike, or read a book, or completely disengage and stop thinking and talking and advocating and explaining. (Well, except for the “stop thinking” part. I still can’t figure out how to get myself to do that!) Here’s to more of that change, however incrementally it happens.