I wrote this rider to help others understand how to support me with my access needs so we can all get the best out of our encounters. I revise it regularly to ensure it stays up to date.
I am an independent researcher and scholar, author and editor of a range of books on research methods and ethics, and I teach and speak on these topics around the world. I was born in 1964.
I have six non-visible disabilities which affect all aspects of my life:
- Autism – social, sensory and emotional issues, including anxiety; auditory processing disorder
- Fibromyalgia – chronic pain, stiffness, fatigue, memory problems, deformity of hands and feet
- Dystonia – neurological movement disorder causing chronic pain, muscle spasms, and tremors
- Asthma – usually well controlled and I always carry inhalers. However, an attack can be triggered by some substances e.g. chlorine, exhaust fumes, smoke, aerosol propellants, reed diffusers, air fresheners
- Digestive disorder – managed through diet
- Poor memory – adversely affected by menopause, fibromyalgia, and Covid
My primary need is for direct and clear communication. If I am to function effectively in work and social settings, I need people to say or write what they mean. I am very unlikely to understand hints or implications in conversations or messages; I need information to be fully spelled out with no ambiguity.
Where it is important for me to remember information, I need it in writing, or delivered verbally when I can take good notes. I cannot take in audio-only information; I need to transcribe it first.
If I am working in the morning an hour or more from home, I need accommodation the night before in a quiet room to myself, which should be an en-suite with a double bed and a kettle, and with no air fresheners or other potential asthma triggers. If I am working all day I need accommodation for two nights because I will be too tired to travel home. I cannot work or socialise with groups in the evenings, though I can enjoy an early dinner with one or two colleagues in a quiet venue.
My digestive disorder is easily managed with a low-GI diet. This means I need to avoid wheat, barley, rye, spelt and oats in any quantity. A little flour to thicken a sauce is OK; an oat or wheat biscuit is too much. I also need to avoid meals that are mostly carbohydrate e.g. most risottos or pasta with pesto. I can digest potatoes. I am allergic to caffeine. I don’t eat meat.
It is also important for me to stay hydrated. Because of my chlorine allergy, I need access to filtered or mineral/spring water unless the tap water is chlorine-free and drinkable.
I am often slow to identify and process my own emotions due to alexithymia. I may need to speak about my feelings some time after an event which has affected me emotionally.
I cannot carry or lift heavy items, sit or sleep on the floor, or carry out tasks that require twisting or bending for more than a moment.
For work overseas I will travel by train where possible because flying is exhausting. If I have to fly, I need a direct flight and access to airport lounges where possible. If no direct flight is available I am likely to need a stopover of at least 24 hours between flights, especially where there are significant time zone changes. I am happy to arrange and pay for my own stopover accommodation.
These are not essential, but will mean I can function better for longer: Minimal background noise. No sudden or loud noises. Advance warning of any predictable sudden loud noises e.g. fire alarm tests. Natural light or nearest equivalent. No bright lights. A seat with my back to a wall (this helps me to hear better and reduces my anxiety).
Living with non-visible disabilities: https://disabilityunit.blog.gov.uk/2020/12/17/living-with-non-visible-disabilities/
An article on Spoon Theory:
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
A description of how to create an autism-friendly environment:https://livingautism.com/create-autism-friendly-environment/
An explanation of the social model of disability:
https://weareunlimited.org.uk/the-social-model-of-disability/
Template for an access rider (aimed at self-employed creatives, but easily adapted): https://disabilityarts.online/wp-content/uploads/2020/10/Access-Rider-for-Creative-Freelance-Practitioners-Open-Template.docx
Helen Kara 