Talking through Issues with my Writing Community
I rely on my writing community a lot. For inspiration. Support. Feedback. They’re an important part of my life, and not just as a writer. So recently, when I was talking to Adam (mentor, 2 Rules of Writing co-founder, good friend) I mentioned that I’d been having a particularly weepy day and I didn’t know why. It didn’t feel like depression, and I’d been keeping the depression demons away and not spending too much time just staring at the walls.
A bit of context. I have lived most of my life with some physical disabilities. But until about two years ago, you might never have known. They were “invisible” or “hidden” disabilities. Now, I need a wheelchair or walker to do a lot of basic tasks. And a lot of tasks that used to be simple are beyond me, at least without help. And those physical disabilities are on top of issues like depression, anxiety, and ADHD that I’ve also struggled with all my life.
As my conversation with Adam went on, I pointed out that sometimes it’s hard for me to determine the difference between anxiety that stems from the anxiety disorder and the anxiety or depression I feel over dealing with particular situations as they emerge.
Daily Issues Dealing with Disability
I tore the meniscus in my knee recently, and I’m trying to avoid surgery. It obviously raises my day-to-day pain level, which doesn’t help the depression at all. Pain doesn’t do anything to help anxiety either. And I have a lot of anxiety. I worry about a lot of things. I worry about everything hurting when I do the most basic things. And I worry about how much the pain or fatigue is going to interfere with my ability to do the simple day-to-day tasks I am actually able to do (forget that some things were major struggles for me to do already, even before the additional pressure of the physical disabilities).
I worry about falling. That’s pretty much a permanent fear. Falling hurts. It puts me at risk for other injuries. It’s comical, the flailing and waving, but dangerous. I fell a few weeks ago. I was okay after it happened, other than a seriously bruised ego, but that’s just luck. It’s not always going to be that way.
Writing and Radical Acceptance of Disability
We kept talking for a while, and Adam eventually said, “Why don’t you write about this for Monday?” I tried to push it off. It’s June, I explained, and I have to write Pride Month content. Which is true. But not entirely honest. I don’t write a lot about the ways that disability affects my life. There are a lot of reasons for that. Some of it is just avoidance on my part. It’s not that simple though. Some of it has to do with acceptance.
I’ve talked about radical acceptance before. And radical acceptance has been an important part of dealing with disability for me. But it’s also challenging. Yes, I can accept the fact that I am permanently not ever going to be “okay” in the way I always used to define “okay.” But that means redefining what “okay” means to me. I’m just not sure how to do that. What does “okay” look like now? And how can I set a benchmark for “okay” when everything fluctuates so much from day to day? Do I go by my “good day” benchmark? That’s where I wake up, take my morning medication, stretch a little, and land on a pain level of 3 or 4. Do I go by my typical day, where most of the day is a 4 or 5?
I kept up my excuses. Adam continued to press the subject. And as is often the case, he was right. His most important point might have been what he said to me about how queer people live full lives and aren’t just one thing. It’s my point he was making back to me. Something I’ve talked about repeatedly in essays I’ve written here. That there’s more to queer people than just that. That it’s not a lifestyle, it’s a life. As we talked, one thing we discussed was that, lately, it’s the physical challenges in my life that give shape to my day more than my queerness or anything else.
Sometimes the Smallest Task is Too Much
As I write this,I’m sitting about eight feet from the task I need to do, and I am having trouble getting up to do it. Not physically–at least not any more than usual. But mentally. Emotionally. I’m worried. I’m worried about falling when I get up to do it. And I’m worried about how much my body might actually hurt while I’m doing it. Because sometimes it does hurt a lot and sometimes it doesn’t.
And as I look at my to do list, there are several other lower priority tasks that need to be done that are near that essential task. In an ideal world, where I didn’t have to contend with managing daily pain levels and considering how much more fatigued these things would leave me, I would just go and do them. Can I afford that extra pain and fatigue in light of the other tasks I need to get done? I am weighing that against what can be delayed, what has to get done and when, and what’s coming up.
The Amount of Planning that Disability Requires
There’s a meeting coming up on my calendar, and, as I plan for the meeting, I’m not only planning the things one would normally do in preparation for a meeting–making sure my calendar is cleared, checking on the agenda and materials, but I’m trying to plan for where I want to sit and have this meeting and what’s the maximum time I’m going to need to get to to that seat and get settled and set up to be able to participate in the meeting? And then, when it’s done, how much time do I need for the reverse process? And then of course, how tired will it leave me? What will I have to put off, not because of the time occupied by meeting-related tasks, but because of the fatigue caused by doing them?
I live with the small victories every day. The days where I’m feeling well enough to do all of the important things on my list. The days where I hurt a little less and can enjoy things a little more. Where I can get through the basics and still do more. Without needing a nap. And I’ve spent a lot of time celebrating big victories for the LGBTQ community. It will be a long time, for example, before I forget how great it felt when marriage equality passed in the Supreme Court. It’s great that marriage equality was passed for the LGBTQ community. As long as they’re not also disabled people.
Disability and Inequality
But I can’t celebrate completely when disabled people, queer or not, still don’t have marriage equality. Because to get certain disability benefits you can’t have more than two thousand dollars in assets. And they’ll check your bank account to make sure. People aren’t getting married or are ending their marriages so that a partner can have all the assets in their name and the needed benefits can still be acquired. This is a frightening situation setting up the potential for theft, misuse, abuse and more. In the US and in some other places, the systems are set up to force disabled people into poverty.
And it’s expensive to be disabled. Some people call it “the crip tax.” Not just because of medical costs (which may or may not be covered by insurance) but because of all of the other extras. Adaptive vehicle so you can drive? You may be looking at up to $50,000. Otherwise you have to rely on public transit and taxis. Which means living in a place where you have access to those things. Which often means moving to more urban settings which often translates to a baseline higher cost of living. And let’s not forget the challenges in finding accessible housing that meets your needs. Properly, professionally trained service animals cost tens of thousands of dollars. Have dietary restrictions or difficulty with food prep? Add in the cost of special diets or buying pre-prepped ingredients so you can do your own cooking and you’re increasing your expenses again.
This is hardly a comprehensive list. There’s so much more.
And in order to continue receiving benefits you’re not allowed to save up this money. And the day to day costs of things like delivery fees for things you can’t get yourself like groceries or paying to have someone come assemble that piece of Ikea furniture because you can’t do it on your own. It all adds up.
It is true. Being disabled affects me more on a day-to-day basis than being queer does.
When Disability and Queerness Overlap… or Conflict
Like right now.
It’s Pride Month. And I would love to be able to be out there celebrating. But I’m not. Some of that has to do with accessibility. Events and locations aren’t always accessible in my wheelchair. And not all buildings have to be. Some of it has to do with COVID fears. Because even two and a half years into the pandemic, it still doesn’t feel safe. Because in the US (and probably other places,) people just don’t care about disabled people. Early in the pandemic, when there were concerns about ventilator shortages, the elderly and disabled were at the bottom of the priority list for ventilators.
You may have seen that headline when it was happening. But if you’re not disabled yourself, it’s hard to know how it feels to read a headline in the newspaper that tells you your life isn’t valuable. If you’re a PoC, you know what it’s like to read that headline. If you’re disabled and PoC, well…
My Worth vs. My Priority
Disabled lives are judged on the basis of the things we can’t do and not on the merits of the things we can do. Not on the joy, the love, the experiences–all of the things that make life worth living. Does that mean I never dwell on the things I can’t do? That I’m never sad about them? Of course not. I’ve done a lot of crying recently over my hair. I’ve almost always had long hair. At some of my lowest points, it’s something I could see in the mirror and acknowledge. That I do have nice hair.
But I’m also finding that, right now, it’s becoming difficult to take care of it, and the best thing to do might be to cut it. I have a lot of feelings about that. But is it really the sort of thing that should make my life less important than someone else? What about all the other things? The love I share? The things I write? The joy? There’s so much more to me than my disabilities. Just like there’s so much more to me than my queerness. And yet they’re not just labels. You can’t just put them on or take them off. All the different parts of me are tangled up in each other.
Disability, Queerness, and the Rest… How do they Fit Together?
And I’ve been stewing about that lately. The place where all of the identities fit in. One of the earliest things Adam told me about writing was “tell the stories only you can tell in the way that only you can tell them.” For me, that means telling stories from the perspective of all of the things I am, which includes being queer. And being disabled. Being Jewish. Being a parent. And being all of my other labels. But when I write, does that make me a “big Q Queer writer” or a “little q queer writer”?
I’d always seen myself as the latter–someone who is a writer who happens to be queer. Does my growing portfolio of serious writing about queer topics make me a Big Q Queer writer? If it does, what does that mean? Will it limit other opportunities? Will it become harder to get other work about non-queer topics taken seriously? I’ve spent a lot of time learning about what it means to be a queer person–to develop a whole identity as a person that includes being queer as a piece of it. But learning to be a queer writer, whether it’s Big Q or little q is new and different.
I am All of these Things Every Day. I am a Whole Person. And I am a Life Worth Celebrating
During Pride Month I try and take the time to honor the place that queerness has in my life a little more than the rest of the year. I’m still queer every day. And I’m disabled every day, too. I don’t celebrate that. Ever. Even in March, during Disability Awareness Month. And maybe that’s part of the problem. I celebrate so many other parts of who I am, but the disability thing? I don’t celebrate that.
I’ll say it aloud (and that took a long time) that I’m disabled. But I don’t talk much about the real experiences. The frustration of not being able to do things for myself. The anger I feel when my body can’t do what I want. Disappointment when I can’t do things. There’s also a lot of fear and a lot of loss to deal with. And it’s all a part of my disabled experience. My disabled life. And that’s a whole life worth celebrating. With all of the joy, love, disappointment, anger, and excitement that come along with it.