Self-care is being honest about my access needs
There's a tension between generosity and exhaustion in my disabled life.
If you talk to me on a regular basis, you know I’m always exploring something new: I love learning. In the past year, I’ve taken classes on everything from connecting with queer ancestors to becoming a better interviewer to foundations of herbalism.
Last December, a new coach and I negotiated a hard stop on all new extracurriculars while I built up the muscle that allowed me to determine what I actually felt excited by and would use my limited bandwidth to do. My curiosity outpaces my capacity a lot of the time, and I had reached a point where I needed to give myself permission to a blanket ‘no.’ It didn’t matter how interesting or aligned any opportunity was — I repeated to myself that I had too much on my plate and I let it pass me by.
Over the past few months I’ve built up my discernment over where my energy goes. I’ve also done some reflecting on which environments are best for learning. I have so many interests, and many classes or workshops meet the threshold of being aligned with my education priorities. But being cognizant of my learning style and access needs has allowed me to better determine which invitations are right for me.
Prioritizing my access needs is a constant gift to my future self. I try to get by a lot of the time and I nearly always regret it. I’ve made some fumbles along the way by not asking for more clarity — for instance, there’s a huge quality difference between an edited transcript and a raw Otter output — and that has made me more proactive.
Prioritizing my access needs is a constant gift to my future self.
If a teacher doesn’t list anything about accessibility on their sales page, I reach out. One thing I’m working on now is arming myself with better resources — because nearly every time I ask about whether videos have closed-captioning or whether transcripts will be available, the answer is no. I’d like to be better prepared to share services that offer those types of accessibility services, because I’ve been asked and I don’t know the answer!
I also like to think that even broaching the topic of accessibility helps lend visibility and voice a need that can be accounted for in the future. It’s not accessible to me right now, but maybe in the future it will be to someone with similar needs.
There is a twinge of I feel a little bad when I ask, because I know captioning and transcript editing costs money upfront. I know a lot of people are sharing knowledge for income and can’t afford to make their content accessible. I think knowing more about costs and being able to recommend resources will help me feel better about those asks…but I also hear myself say that and get frustrated about having to always have the directions for others.
I go back and forth about how generous I need to be when discussing accommodations. I need to balance education and managing feelings. Many people I speak to pride themselves on inclusivity, and it is hurtful to learn that they accidentally excluded someone.
I have base frustration that I’ve accepted — I wish I didn’t have to ask about access needs, because I wish disability was normalized. But people also can’t anticipate my needs. Most strangers I interact with have never had to personally grapple with disability, and patience is needed to introduce them to the concept and often technical aspects of making spaces accessible.
There’s a stronger rage when I have been made to feel like my access needs are a priority, and then they are ignored. The anger is exhausting though, because it will continue to happen. It settles down into a thrum of disappointment, of feeling not important. Sometimes I can make peace with it, and sometimes I can’t.
It’s a lesson in both/and, in holding two emotions that feel incompatible.
I’m at a place now where I’m financially secure enough that I can choose to work at places where I know my needs will be met. During my last round of job interviews, I decided I would disclose during the hiring process — beyond requesting accommodations, I would proactively explain what my disabled life looked like and whether that would be compatible with the organization.
I set myself into a strong stance of if they can’t accommodate me, then screw them, which felt very empowering and like I was caring for myself. The reality was a bit messier: well-meaning people suddenly having to figure out solutions with very high stakes, several situations where my needs weren’t met because of technical malfunctions. I was reminded to have grace, because I was specifically asked for it due to a learning curve. That jolted me out of my attitude and tapped some compassion in me. Sometimes it feels like I have a “good faith” or “patience” meter, and it tends to either be full or empty — rarely in between.
It’s a lesson in both/and, in holding two emotions that feel incompatible.
It’s funny because this dynamic plays out in so many different axes, and I’m reminded of how many BIPOC are expected to be kind and patient when talking about racism, colonialism or systemic harm. As a white-passing person of color, my capacity for those conversations varies week to week, and also with the depth of my relationship with any given person. (The meter, again.) I’m more likely to have a tough conversation with a friend who I know shares my values than a random troll on the internet.
Situations like these will always arise. Prioritizing my access needs sets my future self up for success — not just on a level of being able to baseline understand what is happening in a given space, but also it saves the anger, the resentment, the hours of time trying. I deserve that.
🧶 Threads
Last week reminded me of how much of my life has been mediated through the lens of disability, and how relatively rare that is. I’m grateful for the people in my life who understand some of my experiences.
- asked an excellent question several months ago: Are you even reading in the genre you want to write in? And I found I wasn’t! My creative project right now is a fantasy story, and I hadn’t been reading any fantasy at all. Now it’s all I’ve been reading lately. I blazed through Juniper & Thorn, Hell Followed With Us, and The Sunbearer Trials. In the time it took me to edit this newsletter I also finished Dead Collections, The Unbroken and The Wolf and the Woodsman. If you’re interested, I post mini-reviews on my Instagram stories.
When I spoke on a NICAR panel about data viz accessibility, I was asked what drew me to accessibility work. That led to some introspection on why I care about alt text so specifically, particularly as someone who doesn’t necessarily need it. I remembered it’s because I joined a group for people with disabilities and members often shared the frustration of a lack of alt text being available. It became a form of accessibility I cared about so much because as someone in a visual field, it was a place I could have an impact, and because it was important to be in solidarity with other disabled people.
I’m experimenting with my mental inputs, critiquing what exactly I’m shoveling into my brain (books, social media, newsletters) and how that affects my creative outputs.
Thank you for reading. I hope you have a great week.
<3 Jasmine