Invisible Disability Guilt
(Not sure who called the session, but I took notes in the hope they might help someone else)

Sunday 17 March
Session 5

Unlimited - Access riders
“Work with Me” - a template for conversations around how people in an organisation like to work (sorry can’t find a link)
Access to Work -

Open forum to just chat about Invisible Disability Guilt

Someone said saying you have an invisible disability feels like you are 'coming out'
- and that it is possible also for you to be 'outed' too.

It is possible to mask and appear fine, but working in the Arts is intense.
Sometimes you can do things. Sometimes you cannot. When that is = unpredictable.
Someone said that they'd like to feel able to explain this. Perhaps there are not always the ways at the moment.

Access riders are a good way to explain to employers what you need.
Suggestion was that you can make access riders personal to you and how you work. They aren't 'cut and paste'. Someone expressed the idea that it's good if you can say 'These are the ways I like to communicate' or 'These are my boundaries'.

‘Work with Me’ is a guide to how you can have meaningful conversations around invisible disabilities in the workplace. Specifically, everyone is involved, not just those with an invisible disability. Everyone in the workplace knows the pain points of everyone else, so as to create a workplace that is good for everyone. Using this can act as a de-stigmatiser.

Is it better to get a diagnosis (label) or do you just say 'this is me'. Mentioned that a diagnosis might also help to highlight your positives too. The nice thing about a diagnosis is that it gives you access to certain funding.

One of the problems is that the criteria for diagnosis is constantly shifting.
Suggestion that the medical profession can dislike multiple diagnoses.

How do you differentiate between someone's behaviour and if it is part of a diagnosis? Suggestion that in lots of organisations, many managers don't know when something is a behaviour or part of a condition.

Mentioned that not all invisible disabilities present in the same way. Diagnoses can be changeable - different professionals - different opinions - Your Mileage May Vary! Problem of medicaticalisation and medical professionals who view health/conditions ‘a certain way’. Difficulty in that professionals also want you to talk about your worst days, and that’s the hardest thing to do when unwell OR you often seek help when not at your worst.

Invisible disabilities are a process of management - not fixing. Someone mentioned that living with an invisible disability was like being on a tightrope - anything can tip you over.
There is a huge emotional and admin drain. Get others to help you get what you need!

Easier to advocate for others and not yourself. You may see your disability as more highly functional than it is. May find it easier to give than receive. “Buddy Doubling” - working with someone to give each other mutual support.

Unions can be a help in advocating. Equity has provided help for someone in the past.

Someone said ‘I advocate for others, but providing BSL is straightforward’ - this statement was gently challenged - your adaptation is also needed/valid too (in this case the need for a 4-day week)

Are the words ‘invisible’ and ‘hidden’ problematic themselves? In the US they say ‘non-apparent’ - is this any better? Is there a better term?

Question about if possible you try and hide your disability or if it’s better to be open and upfront. Suggestion that organisations are able to ring fence jobs for disabled people. (Non-disabled is a protected characteristic)?

Difficulty with roles that are under-funded/under-resourced, which do not have resources to help with disability. Especially in this sector? Where over-work is the norm. You can feel guilty for taking more resources.

Suggestion that the analogy is being in an aircraft - you help yourself- put on your own oxygen mask first, if you are struggling yourself, it is harder to help others.

HALT model - Ask am I?

When in these states its harder to tell if it is your disability making things harder. Try to ask what you need.

Once you have attended to the smaller states above, perhaps only then can you answer the bigger questions like ‘Have I surrounded myself with the right people?’ ‘Why am I in this city’ etc.