Hanni negotiating a rock with two walking poles on Scafell Pike.

Hanni’s nystagmus story

Whilst the trustees oversee strategy and guide the direction of the charity, overall management and day-to-day operations are in the capable hands of our small dedicated staff team. Hanni is the newest member of the Nystagmus Network staff team. This is her nystagmus story, in her own words:

When I was diagnosed with nystagmus in October 1987, my parents were told 3 things: I wouldn’t drive, I wouldn’t go to mainstream school and I wouldn’t ride a bike. Devasting news for first time parents. But wow, have I proved those doctors wrong!

Not only did I go to mainstream school, I achieved 10 GCSEs, 4 A Levels and a 2:1 BA (Hons) in Primary Education. I secured my first job in a Montessori nursery (yes, there were lots of turned down job applications along the way, but determination got me through) and I then went on to complete a Diploma in Montessori Early Childhood and Pedagogy. My greatest achievement during this time was leading an Outstanding Ofsted inspection as Manager of a 40-place nursery. I then became a Managing Director of a small collection of nurseries, alongside 2 colleagues. I now work for the Nystagmus Network.

As a teenager I did a local paper round, on my bike. Going a familiar route and/or following my dad who would call out instructions or hazards made this possible.

I love to travel and have done so through university (teaching in India for 2 weeks), and more recently with my husband to Vietnam, Italy and Croatia. I find bright sunshine a real challenge and so I’m heavily reliant on my husband guiding me, particularly when it comes to negotiating steps and busy places.

Since having my son in 2018 (who has incredible sight), it has instilled in me how important it is to normalise disability. At three 3 and a half he is already learning how to help me: pointing out steps, describing where something is and telling me what he can see.

I take up offers of help and support, eg cane training, PIP, use of a Blue Badge and discounted theatre tickets. These make everyday life more accessible for me. 

Nystagmus is part of me and makes me who I am today. I challenge myself to do things that I know will be difficult: I travelled to Shanghai on my own to visit a friend and in 2011 I climbed Scafell Pike, with my now husband. This was an immense challenge: the uneven ground and countless steps made it particularly difficult for me.

I want to show people that having a disability doesn’t have to limit you. Yes, I have had to work harder than others but I’m proud of what I’ve achieved.

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