Category Archives: identity
How many “minor health aggravations” do you need before you become an official Person with Disabilities?
I’ve been identifying as such for a few years, but I always feel like a total impostor. Not because of the reactions of other PWD: everyone I’ve met in the disability justice community has been amazing about inclusion, and folks within the community tend to be aware of invisible disabilities. But I still wonder to myself: do they assume I’m sicker than I am? Do I really have a right to be here?
Health care is so broken in this country, but so is culture. I’m only now, in my early thirties, starting to realize that there are a number of health problems I have that I shouldn’t “just accept.” At first, it was the looming spectre of the pre-existing condition (I can’t even bring myself to acknowledge that said spectre is back, I just can’t). Then it was the feeling of “hey, I’ve been ‘fine’ with this for years, it’s no big deal.”
My turning point was an issue with energy that sometimes put me in the position of sleeping 14 hours at night, then needing a 4-hour nap in the middle of the day. In other words, I wasn’t able to convince myself to seek medical help until I reached the point of a serious threat to my function, something “disabling” enough to affect my work hours. Once I hit that point, I realized that I couldn’t just keep “dealing with it.”
Whenever I’m talking with other white millennials about race, I’ve noticed that a key (and probably the most personal) anxiety that comes up is around gentrification. A lot of young white folks living in urban areas with limited funds end up in historically black and brown communities, and those who are aware of their role in the systemic force of gentrification tend to be uncomfortable about that and at something of a loss for what to do about it.
In a lot of ways, I get that anxiety. If you’re priced out of other neighborhoods, and you need to be in the city to work, then it’s understandable to move into an affordable apartment in an area that’s either largely non-white or in the process of gentrifying. But what does make me want to call my peers in is a tendency to want to make their new neighborhood more like where they came from, to blame black and brown residents for being “unfriendly,” or to use racially coded language when talking about urban geography.
I’m sure there are good arguments for white people not moving into these neighborhoods at all, but most of what I’ve seen is not telling white folks not to move in–a lot of residents just want these folks to respect the history and culture of the community and tamp down on that white entitlement instinct. It’s not just about physical movement, it’s about who gets to own a community’s character, and who has the right to change that character. So if you’re a white person concerned or unsure about gentrification, here are a few pieces of unsolicited advice:
All right, y’all, it’s confession time. While I’ve never found it super easy to be consistent in my writing and activism, the past year has been especially hard. I’ve struggled with extremely low energy, sometimes sleeping as many as 16 out of 24 hours in a day, and rarely fewer than 11-12. I was always a big sleeper, but this is getting ridiculous. One day, my roommate said to me “God, if I slept as much as you do, I’d never get anything done!” and a lightbulb clicked. Not only is low energy a legit medical issue, but it’s also pretty disabling.
Even when I’m in a healthier place, I have trouble getting everything done. I live a fairly typical millennial existence of FOMO, decision fatigue, and constantly rebooting my productivity processes to optimize, optimize, optimize. I came to terms a few years ago with the fact that activism was never going to be my full-time gig, but I’m still holding on to a lot of guilt when promises come in late or not at all, e-mails go unanswered, and my TBR shelf remains very solidly TBR.
This week my labs came back and I found out that I am very B-12 deficient and also a little D deficient. I don’t know yet if supplements will be the magical pill that cures everything, but of course I quickly started dreaming about what it would be like to have more time in my day. Time to check items off my to-do list, but also time to do silly things, to watch TV, to read books. That said, even if I get a few hours back in my life, it doesn’t change the underlying fact that I feel guilty when I don’t do things. And why, really?
Yesterday, I nearly had a breakdown when I realized that I’d let my feed reader go unchecked long enough that some items are gone and unrecoverable. Noooo! What if that blog post held the meaning of the universe, life, and everything? (Say it with me now.) But then today, I looked at my much-shorter unread count and actually read the articles. And I was done. And while there’s still a lingering desire to punish myself for losing something forever due to slacking off, it’s also nice to see that empty queue. And maybe it’s okay, just like every time I e-mail someone apologetically after radio silence, they tell me that it’s perfectly okay. Okay? Is it okay to be okay? I think it might be. So this isn’t an apology for the sporadic nature of my contributions of the Internet, but more some thoughts and feelings to put out there about spoons, disability, and the nature of communication. If you’re feeling the same way? I give you permission to release as much as that guilt as you can. You’re okay too.
The other day, a white friend reached out asking if I had ideas around how to acknowledge as a presenter that a particular course’s content might be especially loaded for Black folks in the room. I certainly don’t consider myself an expert in the topic, but I have been experimenting over the years with different ways to acknowledge my whiteness and position of power as a presenter, facilitator, or speaker. Some of the things I normally do include:
- Regardless of course content, mention that the course is taking place on occupied Native land, acknowledge my privilege as a white presenter, and call attention to the number of white people in the room if it seems to be a majority white space. This is mostly for the white people in the room, to draw their attention to whiteness since whiteness is often invisible or the assumed default. I also hope to signal to POC that I’m aware of these things, though I know that doesn’t make me a “safe” presenter.
- Acknowledge where a particular topic may have loaded or just different meanings depending on cultural context and give examples. I hope that doing this again is a flag both for white folks and for POC, and makes space for bringing up cultural specificity where participants feel comfortable doing so.
- Explicitly say that as a white person, I can’t comment on some things, beyond offering perspectives I’ve read or heard from POC, because I don’t have that experience. Acknowledge that the course content is less rich because of this. I’m just trying to offer some honesty here, and avoid falling into the “well X culture practices X way…” trap.
Recently, I wrote up a travel bucket list, and in the list of places I want to go, found my own racism staring me directly in the face.
But before I get to the contents of list, first some context. When I started traveling abroad, I set a personal policy that I would not go anywhere where I couldn’t at least speak enough of the language to have a logistical conversation about travel-relevant topics. I think that policy initially came from a good place–I was frustrated with the xenophobia I saw in American travelers who complained about how terrible Paris is because the French are super rude, but didn’t bother to learn a word of the French language. “Everybody speaks English!” always struck me as deeply wrong, and I was struggling a lot as a teenager with the meaning of American empire and my complicity in it.
In high school, I was drawn to the study of French because it had always seemed like a rather sophisticated, romantic language, and I already had some exposure to it. I picked German pretty much out of a hat because I needed another elective and it worked for my schedule. So I’m not going to blame myself too hard for starting with European languages, but I do think it had a role in how Eurocentric my perspective skewed over time.
I’m a pretty extreme pacifist. Beyond not believing in violence as a general solution, I practice non-violence to the extent that I don’t plan to defend myself (beyond running away!) if I’m ever violently attacked. I’m on a slow but steady trajectory, as well, towards veganism for this reason.
But that said, I don’t advocate pacifism to others. Please, please punch Nazis. And if you are black or brown and your means of resistance is violent, then I fully support your right to use violence as a part of your resistance strategy. White people have systemically engaged in horrific and unconscionable violence against black and brown people for hundreds, and I assume thousands, of years. So any white person who suggests that black and brown folks must resist using non-violent means is frankly full of shit.
I think it’s important for white pacifists to acknowledge that we’re coming from a place of enormous privilege. Many of us have never actually been in a violent situation, or in a situation where our only means of resistance was violence. We don’t have any lived experience of structural oppression and violence of the kind that black, brown, and Native folks face on the regular. So while I still believe in pacifism as a philosophy, my belief has shifted from something universal to something situational and specific. I want to avoid, as an individual, perpetrating violence, while at the same time being aware that I will spend the rest of my life complicit in extreme structural violence and genocide. Pacifism doesn’t wipe my slate clean of that fact, and it’s a choice made in context.
Dear organizers, event planners, and company representatives:
Stop assuming that access is too expensive.
Build access into your budget from the start of planning, not as a reluctantly tacked-on afterthought. When you seek funding or set prices, determine the cost of your event with a range of access services included.
Ask actual people what they need if you don’t know, and be broad in your call for input. Many people aren’t attending your events because they assumed they wouldn’t be included. It takes a lot of energy to reach out and ask for a particular access need to be met when your lived experience has been constant rejection. And not everyone who would benefit knows to ask–plenty of folks who don’t identify as disabled will have a more pleasant event when you consider things like captioning, designated quiet rooms, and nutritional variety. That means that they’ll come back, recommend you to friends, and spend their money on your event. They may think of services as “luxuries” rather than accommodations, but the principles of universal access don’t require anyone to identify as disabled. The point is recognizing that keeping access in mind benefits everyone.
Oh, and if you say you’re going to provide a particular kind of access, but fall through because you didn’t take the cost into account? You look like a jerk.
If you belittle the person asking for services, make value judgements about their request, suggest that they pay for the service, or tell a Deaf person to find their own interpreter? You look like a jerk.
If you say you’ll provide access, but ignore the actual request and provide an alternative (cheaper) service that doesn’t fully meet an attendee’s needs? You look like a jerk.
If you’re a big company and refuse to provide types of access that plenty of small non-profits bend over backwards to provide, even digging into their own limited pockets, because it’s “too expensive?” You look like a really, really big jerk.
Access matters. Do the right thing.
One of the little ways I try to apply an equity lens to my work is by being very aware of my own biases, especially around race. This comes up as a practical matter more than you might expect in data management, especially if you’re working with data sets focused on individual people.
I’m sure there are more egregious examples, but one thing I’ve seen and found particularly jarring is the abbreviation “BG” in front of an ethnicity. What does BG stand for? Best Guess. In other words, whoever collected the data or set up the database structure to include these value options decided that having ethnicity data on a person was more important than their own racial/ethnic identity. This insidious little practice takes away individual autonomy and conflates ethnicity with skin color, erasing actual identity in favor of having more complete statistics.
In this post, I’m addressing my peers: white folks who are marginalized along some axis other than race. Poor and working class white folks, queer and trans white folks, white folks with disabilities, etc.—we need to be honest about whether we’re leaning into the identities under which we’re oppressed, at the expense of doing honest work around our whiteness, racism, and anti-Blackness.
I don’t think it’s an uncommon experience to focus on how we’re oppressed and marginalized, nor is it blameworthy on its own. Of course we notice those identities more—that’s what white privilege is. It makes whiteness the invisible norm, whereas our other identities are what make us targets of slurs, violence, economic disparity, and other injustices. But at some point in our journeys, once we get through our excitement of consuming all the literature about queerness/class/disability/etc. and sharing in righteous anger with our comrades (or ideally, even before then), we need to also address the fact that we are white and therefore in a position of extreme privilege. We need to read what people of color have to say, to listen to what people of color have to say in our communities and workplaces. We need to sit with the discomfort of our racism and fucking do something about it.
If your reaction to reading the words of people of color on racism (and particularly black people, as anti-Blackness is its own thing in this culture), is guilt and a desire to run back to the safe enclave of writing about your own people, good. Keep reading.
I saw a femme on the metro the other day, and for whatever reason, this person’s gender presentation got me thinking. They were dressed relatively simply, their clothing all sharp black lines, but the combination of hairstyle, eyeliner, and a bold red lip pushed them into the femme box in my perception. They also had this challenging stare that made me blush and look at my lap, and for some reason, start thinking about the way I do femme in contrast.
Femme is one of the few identities that totally speaks to me—no doubt in part because, as an identity, it’s so fluid and can be so many very distinct things all at once. FemmeCon 2012 was one of the few events where I really felt community. One of the best things about it was that, as an entire conference for femmes, there were so many varieties of femme representing, and your femme was taken as given by virtue of being present there. There was no femme bar to entry, and so I saw femmes like me (“lazy femme” or “blah femme”) alongside a million other different expressions. I didn’t need to prove myself, or think too hard about the difference between what I’m able to show the world physically, who I am, and what I might want to be.
To clarify a bit: my gender exists somewhere between squishy shy alien creature and calm, helpy robot. It’s not really something I can represent in physical space. I am drawn to things coded feminine and to queering them, so I experience delight in the color pink, in spoonie communities of care, in fannish frivolity. Many of the things I love can most easily be interpreted through a femme lens—except, I sometimes fear, for me.