This rider exists so you don’t have to guess, and so I don’t have to spend the encounter explaining myself instead of doing the work. It says how to support my access needs so we both get something good out of working together.
It is the short, operational companion to my Neurodivergent Collaboration Manual. The manual explains how my mind works. This rider tells you what to arrange.
I am a co-founder and director of Stimpunks Foundation, a writer, and a retired software engineer. I work almost entirely from home, in writing, on my own clock.
The social model describes my situation well. My body sets real limits — the pain and the spasms are not socially constructed — but most of what stops me from participating is environmental and fixable. Broken systems, not broken people.
My Disabilities and Differences
Some of these are visible. Most are not.
- Autistic — monotropic attention, situational mutism, exposure anxiety, demand avoidance, rejection sensitive dysphoria, and cumulative Autistic burnout. The manual covers all of it in detail.
- Stiff Person Syndrome (SPS-plus / PERM features) — progressive muscle rigidity and episodes of agonizing full-body spasm, triggered by sudden noise, light touch, cold, emotion, and overstimulation. Also double vision, nystagmus, vertigo, difficulty swallowing, and unstable blood pressure and heart rate. I have torn rib muscles and cracked ribs from spasms. Laughing, crying, coughing, yawning, sneezing, stretching, reaching, and turning over in bed can all set off a cramp cascade.
- Fibromyalgia — chronic widespread pain, stiffness, and fatigue that stack on top of the SPS.
- Auditory Processing Disorder — I cannot separate speech from background noise. Audio-only information does not reach me reliably and does not stay.
- Poor working memory — if it isn’t written down, it did not happen. This is not disinterest.
- Sensory overwhelm to sound and touch — sound and touch are not merely unpleasant for me. They are spasm triggers. This is where my Autistic sensory profile and my neurological disorder compound each other.
- Power wheelchair user — I cannot walk any useful distance. My chair is also regulation equipment: I lost stim pacing when I lost mobility, and rolling gives that back.
- Vegan — an ethical commitment and medical need, not a preference to be worked around.
My Access Needs
Split into Essential and Desirable, after Andrew Hugill’s rider. Essential needs are the conditions without which I cannot participate at all. Desirable needs are ones I can go without, at a cost in spoons and in recovery time afterward.
Essential
- Remote and asynchronous by default. I participate from home, in writing, on my own clock. Treat in-person attendance as unlikely and travel as a separate negotiation, not an assumption.
- Write it down. Agendas, decisions, questions, requests, deadlines, and changes — in text, in advance. Verbal-only instructions are inaccessible to me twice over: my auditory processing loses them and my working memory doesn’t keep them.
- No phone calls. Email, document comments, chat, and messaging work. Unscheduled voice calls do not.
- Captions on everything — video calls, recordings, and video. Transcripts for anything audio-only.
- Do not touch me, and do not touch my wheelchair. Light contact triggers spasms. A hand on the shoulder is not a kindness; it is an injury risk. My chair is part of my body.
- Quiet. No background music, no competing conversations, no open-plan rooms, no fans or hums. In groups, one person speaking at a time.
- Advance warning of loud or sudden noise — fire alarm tests, applause, amplification checks. Startle is a spasm trigger.
- Processing time, and silence left alone. If I go quiet, wait. Don’t repeat the question, don’t rephrase it, don’t fill the gap. Rephrasing resets the clock. If speech has gone, we continue in text.
- Step-free access throughout, with a turning radius for a power chair, and an accessible bathroom I can actually use. Confirm this by looking, not by checking a box. “Accessible” on a venue website is a claim, not a fact.
- Moderate temps Cold triggers rigidity and spasm. Heat triggers profuse sweating.
- Vegan food, clearly labeled, if there is food. Not “vegetarian and we’ll see.”
- Direct, explicit, written feedback. Say the thing. Hints, hedging, and vague unease leave me to fill the gap with the worst available interpretation, and RSD makes that expensive.
- A quiet, dim place to retreat to, and no explanation required for using it.
- Short sessions with breaks. Marathon meetings are not available to me at any price.
Desirable
- Natural or low, warm light. No fluorescents, no strobing, no lights aimed at me while I speak.
- Small groups — ideally three or fewer. Free-flowing networking events are the least accessible format there is.
- No unannounced video-on requirement. I may keep my camera off and contribute in chat.
- Photos or video of an unfamiliar space in advance, and a named person to arrive to.
- No manufactured urgency. If it’s genuinely urgent, say so and say why — the reason is what makes it workable.
- No being watched while I work, and no being asked to perform knowledge on the spot.
- Predictable check-ins rather than spontaneous evaluation.
- Recovery time budgeted after anything demanding, not just time budgeted for the thing itself.
If Something Goes Wrong
In a spasm episode: do not touch me, do not move me, and do not try to straighten me out. Reduce noise and light. Speak little and quietly. Stay nearby but do not crowd me. It passes. It is not an emergency in the way it looks like one.
In a shutdown: same answer. Quiet, dim, no touch, no questions. Communicate in as few words as possible, in writing if you can. Let me come back on my own.
Do not call an ambulance unless I have a genuine injury, a fall, a breathing emergency, or I ask you to. Emergency responders reliably read SPS as psychiatric, and the intervention does more damage than the episode.
Emergency contact: [name — phone — email]
Further Reading
- Write a Neurodivergent Collaboration Manual — the long version of how I work, and a guide to writing your own.
- Stiff Person Syndrome, Céline Dion, and Me — what SPS is, from the inside.
- Stimpunks Pattern Library — design implications for sensory load, processing time, and monotropism.
- Interaction Badges — how we signal availability for interaction at our own events.
- Meeting Your Needs — the form we use to ask everyone else this same question.
- Access Rider — Panda Mery, Access Rider — Helen Kara, and Access Rider — Andrew Hugill — the three riders this one is patterned on.
- Creating your own Access Rider — Unlimited’s template and guidance.
Access is relational and ongoing, not a checklist I hand over once. Ask me. This document will change as my conditions do.
Last updated: August 2026