I’m disabled

I have a bit of a rough history with using the word ‘disabled’. It almost feels like stolen valour to use a term most stereotypically applied to people who need wheelchairs, white canes, or constant medical care to experience a standard of living that many take for granted.

But I’ve come to realise that such a stereotype exists, in part, because people like me feel so awkward using that label. I also live with physical and mental circumstances outside of my control, and also have processes and assistive devices to compensate for them.

Disability isn’t something to be ashamed of or embarrassed about, and I’m working on no longer worrying that it is, so here’s a quick overview of what’s goin’ on.

Hearing loss

I have partial hearing loss in my left ear. I have difficulty hearing frequencies starting around of 750 Hz and becoming significantly worse the higher the frequency becomes…

This loss happened suddenly and without obvious cause during the Covid-19 lockdowns of 2020. As I didn’t want to attend a GP or hospital during that time, I just lived with it and got used to it, until finally getting to seen to in 2026.

The cause of the hearing loss remains unknown, and is currently being investigated.

Accommodating my hearing loss

I currently use a hearing aid to compensate for the difficulty hearing, as well as having my headphones used an adjusted audio balance to favour the right ear.

Even with the hearing aid, I may not hear you clearly. My hearing aid doesn’t restore my hearing to what it was like before; it modifies and amplifies the frequencies I wouldn’t hear otherwise, which can also add distortion. I may ask you to repeat things, or focus on watching your mouth so I can try to lip-read too.

Anxiety and neurodiversity

Perhaps unsurprisingly, given the rest of my about section, my neurons are not very typical—I have a tendency to think of things in a different way and struggle to operate in certain situations, particularly social situations. I’m not formally diagnosed, but I am probably somewhere on the autism spectrum.

I also have anxiety, which can also make some situations harder for me to overcome.

I’ve known that I’ve had anxiety for a long time, but I’ve only started being consciously aware of my neurodiversity relatively recently (around 2023). It’s only very recently that I’ve worked up the courage to be open about it.

Accommodating my neurodiversity

I find crowded and loud places unpleasant and, over the span of several hours, somewhat overwhelming. I’ll usually need a break to have a quiet walk and get some fresh air after a few hours.

In conjunction with hearing loss, I have some audio processing issues and can struggle to hear things properly if I’m not concentrating (for example, I cannot listen to someone talk and take notes at the same time). I tend to find it difficult to pick voices out of loud environments, and I can struggle with strong accents too.

I can sometimes be a bit oblivious to social subtext. It’s usually better to be explicit and upfront about how you feel or what you want.

I’m absolute garbage at small talk (in perhaps stereotypically autistic fashion, it feels a lot like pointless filler). I’m also pretty bad at remembering names.

I have a variety of stims that you may see me perform. My stims are typically very subtle and non-disruptive, usually consisting of wiggling fingers and toes, rocking back and forth, bobbing to music, and repeating sounds (echolalia).

Accommodating my anxiety

As before, it’s often helpful for folks to be explicit about how they feel or what they want. Being vague can cause me to overthink things and mentally spiral to the point of losing sleep.

I prefer using asynchronous methods of communication such as messaging apps or email. They give me time to ponder questions, research information and refine any answers, rather than needing to respond immediately.

I struggle to initiate conversations or involve myself in ongoing conversations, as I always feel like I’m interrupting people and my presence might be unwanted.

I intensely dislike presentations. Presentations are basically a smoothie of my anxiety, dysphoria, and discomfort with crowds, all mixed together into something very unpalatable.

Obstructive sleep apnoea

I have very severe obstructive sleep apnoea (OSA), which causes my airway to frequently collapse while asleep, reducing or stopping breathing.

I sleep with a CPAP device, which is a form of respirator that can detect when I’ve stopped breathing and uses air pressure to forcibly reopen my airways. However, the severity of my OSA means that even using a CPAP device, I experience more disrupted sleep compared to someone who doesn’t have sleep apnoea.

Sleep apnoea most clearly manifests itself as excessive sleepiness and lethargy. This can manifest into episodes of microsleep, where I will fall unconscious rapidly and without warning.

Episodes of microsleep can happen multiple times in quick succession. They’re often disorienting, as I’m often unaware that I ever fell asleep. It’s kinda like unexpectedly and uncontrollably travelling forward in time over and over again.

OSA may sometimes manifest in the form of headaches resulting from a lack of oxygen reaching the brain.

Accommodating my sleep apnoea

If I fall asleep while we’re doing something together, just wake me up, and try not to take offence from it. (But seriously, wake me up. No one should be subjected to my snoring.)

Physical movement helps to keep me awake, so I may stand up and walk around. This could be weird if it’s in a meeting environment, but you gotta deal with it if you want me to be conscious.

Neurogenic thoracic outlet syndrome

Neurogeneric thoracic outlet syndrome (TOS) is a mouthful that basically means that the nervous system connections between my brain and my arms are subject to being disrupted, causing numbness and physical weakness in my arms.

My TOS tends to manifest as a consequence of enduring physical activity. This could be heavy lifting or a long walk—the intensity of the activity plays less of a role than the length of time I’m engaged in it.

I will begin to lose feeling in my right arm after 20–30 minutes of activity. If I continue, then by the 45–50 minute mark, my arm will have lost most feeling and ability to move. These times are a little variable (they tend to happen sooner if I’m carrying a backpack, for example), but the ranges are fairly consistent.

My left arm is much less susceptible to these problems, but may also begin to lose feeling over a long period of time.

I’m currently awaiting a physiotherapy referral to try and minimise the incidences and effects of TOS.

Accommodating my thoracic outlet syndrome

Basically, I will avoid doing any physical activity that will take more than half an hour or so, or otherwise will take frequent breaks between stints of activity.

If I’m carrying a backpack, I may change how I’m carrying it to reduce pressure on the thoracic aperture, which helps slow the onset of symptoms.