Disability

Advocacy as work and coffee as compensation
8th February, 2016

In the aftermath of the SF Signal debacle I recommended several ways of supporting disabled voices, particularly disabled writers and activists. One of those was: “Pay us. When you offer to publish us, invite us to conventions, ask us to share our expertise, pay us.” Later, Katherine Locke tweeted me and suggested looking into Ko-Fi, a service that let’s you ask people to “buy you a cup of coffee”—or, in other words, donate $2 to your PayPal.

I followed her advice, tweeting out a link and asking people for coffee. The donations started coming in. $2 here, $4 there, occasionally even $10 or $20 (from some especially generous people), and I quickly had enough to cover over half my credit card bill for this month. As someone who doesn’t have a job (for a variety of reasons, not least of which are disability-related), this was huge for me.

What was even cooler was seeing so many other people in the YA community tweet their own Ko-Fi links. It was a day of support, in terms of boosting but also in terms of money. It was invigorating seeing so many people I respect and admire stating that their work is worth financial compensation.

That afternoon I said:

[Embedded tweets: It’s hard enough accepting that your writing has value, but it’s even harder recognizing your less concrete work does too. Advocacy in particular is hard for me to see as “work” worthy of being paid. Advocacy doesn’t feel optional to me. It feels like survival.]

This has been on my mind a lot, especially now that I’ve been pitching and publishing personal essays. My advocacy now has three main branches (in no particular order): 1) my work with Disability in Kidlit, 2) speaking and boosting on Twitter, and 3) my essays. (If I blogged more on here, I’d probably include that as 2a, but as it stands, I don’t view it as a major component. For now.)

So far, I’ve been paid for all my published essays, and I intend to continue that trend by only pitching to and accepting invitations from venues that are willing to pay me. (Of course, there are exceptions, because I understand that some sites, especially those that are “niche” and/or run by marginalized people like, for example, Disability in Kidlit, can’t afford to pay their writers.) It took me several months to come to a place where I was fully comfortable taking that payment, though. My essays are intensely personal and (so far) focused on my disabled identity. I was worried that accepting money would mean commodifying my disability in some way, playing into the abled gaze by the very act of speaking within spaces created by said gaze. Of course, by that logic, the only ways to subvert it would be not to speak at all or to speak only in places the disabled have built, neither of which are fulfilling solutions for me.

So I speak, for a fee. My essays are work and that work is valuable. It’s valuable in terms of advocacy—sharing a new perspective, contributing to ongoing dialogues, critiquing feminist spaces, encouraging an examination of privilege, etc.—but it’s valuable in terms of dollars too.

As hard as it was to come to that conclusion, it’s been even harder to recognize that that second branch, the social media branch, is valuable in a similar way.

[Embedded tweet: But [advocacy is] work too. It’s time. It’s intellectual and emotional labor (both of which have physical consequences). It’s risk. It’s hard.]

My tweeting doesn’t bring revenue for anyone the way that my essays do for the sites that publish them, but that’s the only substantial difference. In a lot of ways, the advocacy I do on Twitter is more draining than my essay work. Essays are written in isolation, edited (ideally) by someone trusted, and then out of your hands once published. Twitter is both a stage and a conversation. And when the spotlight swings to you (for instance, when something outrageous happens, like with SF Signal), it’s doubly exhausting to have to succinctly, thoughtfully express yourself while fielding real-time feedback and expansions and questions and pushback and everything else. It’s work.

***

Today, Dahlia Adler tweeted the following (which I’m pretty sure was completely unrelated to any of what I’ve been talking about, but which pinged for me because I’ve been thinking about these things):

[Embedded tweets: As an author – as a *person* – you need to believe and embrace that your work has value. Because you *are* writing words assigned a value. I get impostor syndrome. It SUCKS. But if you can’t genuinely believe that your work is worth something, how can you ask people to buy it?]

While she’s speaking more about fiction, she brings up another important, salient point: words are valuable and so is the act of stringing them together. Valuable in terms of critiquing, reflecting, celebrating, and creating the world we live in. But also valuable in terms of money.

Advocacy in all its forms may be largely about survival for many of us, but why can’t we thrive too?

Our work, our voices, our advocacy, our expertise, our vulnerability, our passion, our time, our effort are all worthy of financial recognition. I’m thrilled so many people (especially marginalized people) spent the other day asking for monetary support, and I hope we’ll continue to do so.

I hope we’ll continue to assert that our work—all of our work—has value. 

 

Buy me a coffee at ko-fi.com  

Microaggressions and Erasure
of Disability in Diversity Discussions
4th November, 2015

I don’t know how to write this. I honestly still can’t decide if I should—even as I’m writing it—because I’m afraid I’ll be misunderstood, or because I’m afraid I’m overreacting, or because I’m afraid I’ll be perceived as overreacting. All of the above, really. But I’m more afraid of not saying anything, of letting it blister only to burst open deep and raw over and over again. I’m afraid there’ll come a day when I choose to withdraw from this community altogether rather than be scraped open one more time.

Before I start, I want to be clear that nothing I’m going to say is directed at any one person or event. This is something that’s been happening for as long as I’ve been part of the YA community, but it has admittedly been happening more frequently lately since diversity discussions in general have been happening more frequently. And maybe that’s why I’m saying something now even though I’ve been planning to write this for ages: because the little hurts are coming in quicker succession and turning into bigger ones. Bigger hurts are harder to ignore.

I also want to make it clear that I admire the hell out of every single person in this community fighting for more and better diversity, risking their careers and well being to do so, and facing unconscionable harassment and abuse for speaking at all.

Having said that, I’m finding it harder and harder to feel welcome in these diversity discussions. And no, I’m not talking about the ones that are focused on racism or transphobia or anti-Semitism or Islamophobia or any other specific marginalization. Those are all incredibly important conversations where my voice does not belong, except perhaps to boost the voices of those who do. My voice doesn’t belong in discussions about A Fine Dessert or For Such a Time, for example. Beyond boosting those affected, my voice would be derailing at best and actively harmful at worst. That’s not what I’m talking about.

I’m talking about the general diversity discussions. Sometimes these develop from those specific ones, sometimes not. Regardless, we have a lot of (sorely needed) conversations about diversity and marginalization in this community…and disability doesn’t always feel welcome there. I’ve started dreading these conversations because they inevitably turn into a string of microaggressions and erasures.

It’s in the way disability is so rarely listed in definitions of diversity.

It’s in the way people say, “You’d never say [X] about someone disabled! Why say it about [other marginalized identity]?”

It’s in the way books with disability tropes and painful portrayals are included again and again in recommended lists and award nominations, even after #ownvoices critics have spoken out against those titles.

It’s in the way those harmful portrayals are often the only ones recced at all, and how #ownvoices writers tend to be overlooked entirely.

It’s in the ableist language used so often and so casually to make a point: “Those people are CRAZY!” “Anyone who says/thinks/does that must be INSANE!” “You’d have to be BLIND to ignore that!”

It’s in all the times someone has said “differently abled” or “wheelchair-bound” or “handicapable” in an article promoting diversity.

It’s in the lack of captions or descriptions of photos, GIFs, and videos. Again, in articles promoting diversity.

It’s in the shorthand we use for privilege: white, and sometimes straight. As though sexuality and race are the only possible axes on which to be privileged or marginalized. As if abled privilege doesn’t exist.

It’s in the way so many people—even those committed to diversity—can’t list the last book they read with a disabled character.

It’s in the way disability is so rarely included when people list the intersectional characters they’d like to see.

It’s in the way people respond to my voice. There’s sympathy, always sympathy, but rarely solidarity. When my voice is boosted, people say, “Listen.” But most don’t say, “This is wrong.”

It’s in the way I’ve seen authors use #ownvoices to describe themselves writing disabled characters—because someone in their family has a disability.

It’s in all the ways we’re ignored, erased, or trampled on during these discussions.

I am white, so I am absolutely privileged. But I’m also disabled (not to mention queer), so I am absolutely marginalized. I have valuable things to add to discussions of diversity, but I don’t always feel comfortable speaking. I worry I’ll be derailing if I focus on disability, or that I’ll be seen as a white girl trying to play oppressed, or that no one will care anyway.

I appreciate the explicit support I get. I do, truly. This isn’t about that. This is about all the subtle ways I’m told over and over again that I don’t count, that I don’t belong in these discussions. It’s the microagressions. It’s the erasure. It’s the apathy. It’s the fact that a supposedly safe space is feeling less and less so every day.

Maybe this is a horribly misguided thing to write. Maybe I should just delete it. But really all I’m saying is:

See us. Acknowledge us. Include us.

Please.

It Starts with Chicken and Rice:
A Tale of Grief, Pride, and Disability
10th September, 2015

I’ve been thinking about disability a lot lately. You might have seen my tweets yesterday about the exclusion of disability in broader diversity discussions. That’s one reason why.

And I’ll be one of the contributors to Kelly Jensen’s YA feminist anthology, FEMINISM FOR THE REAL WORLD, for which I’ve written an essay about the ways my disability affected my sexuality growing up. That’s another reason.

The biggest reason why, though, has nothing to do with the YA community or feminism or diversity. Or it has everything to do with them, but it starts with a plate of chicken and rice.

*

Back in June, I was eating dinner and found I couldn’t swallow. Not like when you’ve got a little cold and your throat feels a bit tight and sore. Not even like when you’ve got a big cold and your throat’s filled with phlegm and other horrors. This felt like my body had forgotten how swallowing worked, as if I’d never known how to get food from point A to point B. It was terrifying, but I figured it was a weird fluke.

It happened again the next day. And the next. And the next.

I went to the doctor. “Your tonsils are huge. Have some steroids and antibiotics.” I had them. I still couldn’t swallow. And the more I tried to eat, the more it hurt. I’d take the tiniest of bites of mashed potatoes—just enough to cover the tip of one tine on my fork—and cough for a full minute after swallowing.

I went back to the doctor. “It might be acid reflux. Have some Prilosec.” I had some. I still couldn’t swallow. And now my throat felt like it was closing up all the time. I sucked on cough drop after cough drop hoping it might soothe whatever was happening in there. It did, for a few minutes anyway. I still couldn’t swallow.

I was so hungry.

I was so scared.

I went to the hospital. They did a CT scan and a swallow study. “There’s nothing mechanically wrong. You can swallow, it’s just taking a lot of effort.” What does that mean? we asked.

“Your muscles have weakened. They’re too weak to get the food down.”

*

I should probably back up. Context is everything, right? I was born with a disease called Spinal Muscular Atrophy Type III. The long and short of it is my muscles started out weak and get weaker as time goes on. The last big drop in function was when I was six and I stopped walking. I’ve been pretty stable since my pre-teen years, though. Over a decade where I didn’t notice any extra weakness.

Not until that night in June.

Turns out the muscles in my throat decided to kick things up a notch—or down one, I guess, depending on how you look at it. But because my body always has to be a special little snowflake, it did things backwards. Usually when your throat muscles weaken, you have trouble with liquids first. Not me! I could do liquids fine. The doctors were all somewhat puzzled, but it didn’t really matter. We’d figured out the mystery. I’d live.

I went home. I saw a nutritionist. I started an all-liquid diet. I got really creative with smoothies and soups. I ate better than I ever had before—all fruits, veggies, and tofu. I became an accidental vegetarian. I had more energy and fewer stomachaches. I felt healthier.

I missed food. I cried when my parents made burgers every Sunday night, the smell infecting the whole house. I bit the inside of my cheek at the mall when I had only one option for lunch: Smoothie King. I realized I’d never have Thanksgiving turkey again, or crepes when my best friend visited, or Almond Joys on sale after Halloween.

I worried. If my throat had gotten that weak that fast, what would go next? Maybe we’d been wrong—maybe I wouldn’t live. Maybe my body was shutting down and food was the first thing jettisoned. Maybe I’d be dead soon. Maybe they were wrong all those years ago when they said, “It’s not fatal. She should have a normal lifespan.” I’d known people who’d died from SMA. So many people. Maybe I was going to be one of them soon. Maybe there’d be a Facebook post from my parents, and dozens of friends from high school I haven’t talked to in years would comment with “:( :(” and “OH NO!” and “So sorry for your loss” and “We’ll miss her”.

I went to a therapist. She said I was grieving. That I’d lost something important and I’d have to deal with all that that meant. She was talking about food. I was talking about something even more.

*

I didn’t hear the term “disability pride” until well into college. It may have even been grad school. (Those years tend to blur together.) I’d never been proud to be disabled. I’d gotten to a point where I wasn’t ashamed of it either, but it seemed strange to put disability right next to pride, as though they belonged together.

I started reading about disability rights and disability pride. I started listening to other disabled folks. I started thinking about ableism and the ways I’d experienced it over the years. I started noticing discrimination and microaggressions and had the language to label them as such. I started questioning why it seemed so absurd to be proud of my body, to be proud of me.

I became proud. Proud to be disabled.

I spoke more—in person and online—about disability. People listened. I got involved in the YA community and found other disabled people, people who were talking about disability and pushing for change. I joined them. I became known for my voice, for my disability, and (I hoped) for my pride.

It took years, but “disabled and proud” became one of the foundational parts of my identity.

And one night in June was all it took to start dismantling it.

*

Even though I hadn’t been proud of it growing up, I’d never felt like my disability was much of a burden. I couldn’t walk, sure, but that was about the extent of it. (That’s a gross oversimplification, but it’ll do.) Even as I was thinking back on my childhood, learning about social justice and marginalization, I found that the majority of the hardships I’d faced were because of ableism, not my disability itself.

But now I couldn’t swallow solid food. Now I’d lost something. Now my body was the one I was fighting, not the world.

It’s so much easier to rail against injustice when you’re pointing at a system, at an institution, at history, than when you’re pointing at yourself. When the injustice isn’t an act of malice or ignorance, isn’t even an act at all. When it’s not injustice. When it’s just one of those things.

My therapist was right when she said I’d have to grieve the loss of food. I did. I still do. But I also had to find a way to reconcile that disability pride I’d fought so hard for with my body’s betrayal.

Was I proud? Did this body make me proud still? Did I want it to?

*

I debated writing all this for a long time. I worried people would read it and pity me. That the only responses would be “I’m so sorry” and “you’re so brave” and “how terrible”. I imagined abled people reading this and having disabled = broken reinforced in their heads, on a subconscious level maybe, but reinforced nonetheless.

But what I eventually realized is just because I feel broken right now doesn’t mean I am. And it doesn’t give anyone else the right to label me as such.

Just because I feel broken right now doesn’t mean I can’t love myself. It doesn’t mean I can’t be proud, even if that pride is a bit less shiny and a bit more fragile.

I feel like my body’s betrayed me. I feel broken. I’ve lost something important to me. I’m grieving.

And I’m still proud to be disabled.

Accessibility: More than an Invitation
30th January, 2015

I’ve been very pleased to see that as the discussion about diversity in YA has grown, disability has largely been included. (For many complicated reasons I won’t get into here—but feel free to Google!—this hasn’t historically been the case in social justice movements.) I’ve especially appreciated the effort to include more disabled folks in physical spaces like conferences and workshops.

However, being invited isn’t enough. Don’t get me wrong—it’s an excellent first step. But it’s important for our abled publishing peeps to understand that an open door, or even a warm and welcoming greeting from inside that door, does not equal accessibility.

I’m going to talk about accessibility in physical spaces from a very limited perspective: mine. But I’m hoping sharing the obstacles I encounter will start the conversation about what accessibility really means.

So, here’s a list of questions I have to consider before deciding if I can go to a thing:

1. Where is it and can I drive there?

Because of several disability-related issues, I usually can’t fly. Which means driving. For me, “driving distance” means arriving without having to spend any night in a hotel. That’s about a 10-12 hour drive, which can get me pretty far but certainly not everywhere. There are exceptions, though. When I attended Clarion last year, I drove from Atlanta to San Diego: a five-day trip. Needless to say, 2000+ miles worth of gas and five days of food/hotels ends up being a LOT more expensive than a plane ticket.

2. Can I bring a caregiver?

I can’t live on my own. I need help getting in and out of bed, dressing, showering, using the bathroom, etc. The answer to this question is usually “yes”, but not always. For instance, when I was looking at colleges, I had to cross a few off my list that wouldn’t allow me to have a live-in caregiver. I was terrified when I got into Clarion that they would say the same thing, but thankfully that wasn’t the case.

3. Who’s going to be my caregiver and how much will it cost?

I’m lucky that my dad can usually go with me as my caregiver. Even still, I have to pay for his food and lodging on top of mine. And if I need to bring a hired caregiver, I have to pay food, lodging, travel, and their paycheck. It can become incredibly expensive.

4. Is there someplace accessible to stay?

When I say accessible, I mean accessible for me specifically. Thanks to the Americans with Disabilities Act (ADA) we have some basic standards for accessibility in America, but each disabled person will have different needs. For me, I need a layout that accommodates my wheelchair and my hoyer lift, a bed my lift can fit underneath, and a roll in shower with a hose. That’s at the very least.

5. Can I stay within walking distance of the event/program?

I don’t drive, and public transportation is super unreliable in terms of accessibility. It’s much easier to be able to transport myself back and forth rather than having my caregiver drive me every time. Plus, I can only go to the bathroom in my room (unless I cart around my giant hoyer lift, which, no) so staying close lessens the bathroom worry. Of course, rooms near these types of events tend to be much more expensive than rooms farther away. This point isn’t necessarily make or break, but it can be.

6. Is the event/program location accessible?

Are there reliable elevators and ramps that aren’t too steep? Are the sidewalks smooth, or are they made of something like cobblestone? Is the area hilly? Will there be giant, difficult-to-navigate crowds? Is there accessible seating (aka spaces without chairs or where chairs can be moved)? If I’m going to speak/be part of a panel, is the stage accessible? If food is served, are there accessible tables (I can’t do booths) and are the counters low enough for me to reach? Etc.

These are the basic questions I have to answer before I can determine if I can attend anything. I’m very lucky that I’ve been able to attend more than I haven’t, but it’s simply not always feasible.

So, how can conferences/workshops/programs/etc. include more disabled participants? First, make sure the physical space is accessible in as many ways as possible. Again, the legally mandated standards do not equal true accessibility for all. Invite disabled people (with a wide variety of disabilities) to consult. We’ll likely make suggestions that wouldn’t have otherwise been considered.

Second, when possible, give us money. That sounds crass, but many disabled people face additional costs beyond the typical cost of attendance. And those extra costs can be ridiculously high. Offer grants or scholarships for disabled attendees. If you invite us to speak, pay us a stipend. I realize there may not be much money available, but understand that without some financial assistance, many disabled folks simply won’t be able to afford to come.

Third, offer options for off-site participation. If you invite a disabled speaker, offer to Skype them in if they prefer. Stream panels and classes online for those who can’t attend. It might take some extra time and money, but these sorts of options would be incredibly helpful in making programs accessible.

This is a woefully brief list of suggestions to improve accessibility, and they come from my very limited perspective. But again, hopefully this will start the conversation.

A Strange Reaction
5th November, 2014

I’ve been trying to take more selfies recently. I haven’t actually done a great job of it, but I’ve improved some. When I take them, it’s a production. I spend a lot of time on my makeup. I spend at least double that taking shots from a bunch of different angles with various lighting. It’s a long, painful process. But I’ve done it a handful of times recently, and that’s good. What’s more, I’ve been posting them almost every time I take them.

The picture in question.
The picture in question.

Last week I had my picture taken professionally for the first time. Isadora Pennington was lovely enough to meet me and get some headshots. I figured it was time to have something other than a crappy camera phone selfie plastered all over the internet.

It was an awesome experience. She told me where to go, how to pose, how much to smile, all of which helped me feel so comfortable. And she took some amazing pictures. Seriously.

So, I posted them, and I made one my profile pic as planned. Everyone complimented them, which I appreciated. And that was that.

Except it wasn’t.

—

Not unlike a lot of people (girls especially), I’ve always had a complicated relationship with my appearance. Mostly, it was a negative one. It got worse as I got older. I did the typical avoiding the mirror while I brushed my teeth thing. I wore long sleeves even in the middle of summer because I hated my arms. In class, I sat with my chin in my hands, strategically pushing the skin backward to try to slim down my face. I hated being in pictures.

None of this makes me special or unique, which is a tragedy in its own right.

But it’s important, because it’s the reason I’ve been trying to take more selfies. It’s why the process of taking selfies is painful. I have to scroll through (and delete) a LOT of pictures that accentuate what I think of as flaws. It reminds me that while I’ve worked so hard to love my appearance, it’s still a challenge.

Because of my disability, it’s also logistically difficult for me to take selfies. I can’t really lift my arms up, so I have to do a lot of finagling to get the phone in position, and then it’s hard to push the button. Because of that, it can be physically painful as well. But another result of that difficulty is that all my selfies are close-ups. My face and maybe my shoulders are included. That’s it.

—

I keep startling myself when I see my new profile pic. That happens whenever you change your picture though. You’re used to seeing specific colors, shapes, whatever, and it takes time to get used to the new.

This isn’t that.

My photographer took a lot of pictures, all from a distance. Which makes sense. Most professional headshots are really upper body shots. It looks weird for your face to take up the entire screen.

But that means my wheelchair is visible. Clearly visible. And it keeps startling me.

There’s not actually a thesis here. There’s no conclusion I’m going to draw. I just wanted to work through why I keep feeling this tightness in my stomach when I see my new picture. It’s the chair. You can see my chair. That’s what’s throwing me, and it throws me that it throws me.

I don’t think I was taking selfies in a way that consciously hid my chair. It was just a side effect of my limited range of motion. But it was a nice side effect.

I think it’s bullshit (and suuuuper offensive) when people say crap like, “Oh, I don’t even see your chair!” or “I don’t think of you as disabled!” or whatever else. No. I am clearly visibly disabled and that’s cool. Erasing that is erasing a huge part of who I am.

What does it mean that I’ve been doing it to myself, even if unintentionally, in my selfies? Selfies that I take in part to control how the world sees me, to present myself in the most attractive light. What does it mean that it never occurred to me to even try taking a picture where you can see my chair?

What does it mean that I am strongly uncomfortable whenever I see that new tiny icon?

I mean, probably the answer is that I continue to have a complicated relationship with my body, and that I’ve still got a fair bit of internalized ableism to work through. And I guess writing this is one way to start working through it.

I’m going to keep the picture for now. Because I do love it. I look great in it! And maybe forcing myself to confront that discomfort will help.