The hands of someone working at a desk.

Nystagmus awareness at work

A guest post

After my first proper job following university, I decided to ‘come out’ about my disability and support needs. I was worried this might make me stand out for the wrong reasons, but felt it was important to be my own advocate.

It was a positive move and I get lots of support and adaptations at work in my new job.

But, with remote working, I felt I was ‘back in the closet’.

Homeworking has been a revelation. It suits me so much better. There’s no commuting and the stress of getting my train, more screen breaks and no setting up the desk each day. I’m all set up at home with lots of natural light and my big screens. No hot desking!

The downside is that people are no longer seeing me every day, passing my workstation. On Zoom they don’t notice my eye movements, my head turn, they can’t see the large print papers on my desk or my wide screens. People have forgotten I have nystagmus.

I’ve found it something of a demeaning experience to have to go through it all again with my manager and my teammates, but the positive outcome for me is that home working is considered a reasonable adjustment and is now written in to my contract.

My message is ‘don’t let people forget about us’. We’re not working for their convenience. Things can still fall through the cracks. I want to work in an environment that lets me shine.

Do you have a nystagmus at work story you’d like to share for Nystagmus Awareness Day 2022? If so, please email us at [email protected]

Download our guide to Nystagmus and Employment here