HackMD
Accessibility Needs
The specifics of my disabilities are usually not relevant; I have strategies such that most won't see what my aytipical experiences cost me. However, there are situations when it can be useful for others to know more details to help me (re)structure environments to reduce that cost.
As an overview: I experience almost-constant headaches, am photophobic (i.e., I avoid certain light sources due to the acute pain-spikes in my headaches they can spark), frequently experience migraines, and have several neuroatypical traits that make it difficult to process information in ways that most people apparently take for granted.
Below I've included more detail on some of these and a general list of 'things that help'. If unsure, please ask.
In more detail:
- Daily 'minor' headaches with occasional 'pain spikes': I experience pain in my head most of the time and it can take considerable energy to ignore it and do everyday activities. Apparently, my experience of almost constant pain is not something that most people can notice. Occasionally I need to pause an activity to wait until a particularly high pain-spike has passed.
- Bad headaches: at times, usually if I’ve had multiple pain-spikes over a brief period. This may be noticed - while I can still function, I am not able to operate at my usual capacity.
- Migraines: an extension of the regular headache where the pain has intensified so much that I can no longer persist in everyday activities (such as work, cooking, etc). In addition to the head pain, my experience of migraines includes high-levels of brain fog, some body aches, and nausea. Occasionally the migraines will reach a level of pain intensity that can leave me completely incapacitated.
- Photophobia: I experience some lighting as intolerably painful (both in terms of acute pain and as exacerbating headaches/migraines). The kinds of lights that are most painful for me are: strobe lights, flashing lights, bright blue/white lights (like on cars and bicycles at night), glare (like reflection off water or shiny surfaces), cold/blue lighting (dawn/dusk and overcast days), fluorescent lights, lightning, fireworks, etc., ,
- When in higher-than-usual levels of pain I find it more difficult to mask some of my neuroatypical traits. This includes perceptual dyslexia symptoms being more noticeable (e.g., slower processing of auditory-visual information that can create difficulties with hearing, speaking, reading, and writing).
- There are other areas where I am apparently atypical but that don't contribute to my disabilities (most of the time). These include the ways in which I can think without any sensory-like mental phenomena, my strong preferences for particular ways of carrying out certain tasks, and my various other lessor sensory sensitivities (such as to certain colours, sounds, tastes, and textures).
Things that help:
- Accommodating my requests to change the lighting when possible and providing forewarning when inviting me to situations where the lighting may be unpredictable and/or out-side your control.
- Appreciating my self-assessed capacity and respecting the boundaries I set to ensure I meet my commitments.
- Appreciating that I function best with direct communication: I say what I mean, without subtext and with a willingness to clarify as required, and hope others will do the same with me. The only exceptions are during established dynamics that incorporate previously clarified subtleties of communication that have been explicitly consented to in advance (such as in within interactions that include sarcasm, affectionate teasing, and so on). Either way, with those fluent in subtext or non-verbal subtitles, I tend to ask for explicit clarification as required.
- Providing information prior to needing to act on them. Ideally, in a text-based format that allow a 'dark mode' and/or can be modified.
- Being aware that occasionally I will need to pause an activity to wait until a particularly high pain-spike has passed. (If so, note that I can be highly vulnerable in this time – please avoid drawing attention to me, especially if we’re in a space with lots of other people. If concerned, just stay close to me and I will ask help if needed.)
- Appreciating that there are periods of time that I simply can’t participate in activities I would otherwise want to – in these cases I won’t necessarily specify my experiences of pain when declining an invitation because I think it is important for people to hear and respect when people say ‘no’ without knowing the reasons behind it.
- Learning some of the tell-tale signs that I’m reaching my pain and/or sensory-overwhelm thresholds and checking-in with me before continuing a shared activity. These signs includes: talking oddly (chronically mispronouncing words or mixing words up in a sentence, and slurred speech); physical clumsiness (like running into door-frames or stumbling); more frequent than usual arm-twitches and eye-twitches; and rubbing spots on my face (usually they are tingling or have acute pain)..
tags: meta-communication accessibility
Date created: 2021
Version: 2.0
Attribution: created by E. T. Smith on unceded lands of the Wurundjeri people.
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