NAC Stories: Seeing The Wood And The Trees

Thalidomide Trust NAC member Geoff SpinkGeoff Spink, NAC member, talks about impaired vision and supporting others with the same challenges

Like so many of us, I was born with extremely short arms and few fingers. That single pill that my mother took, also worked its 'magic' on my sensory system: I was born with a cyst in place of my right eye and my left eye is affected by nystagmus and coloboma. In short, I have what is referred to as 6×60 vision: what most folks see at 60 metres, I can see from only 6m away. Driving, much to my chagrin, has never been an option, even though I am a diehard petrolhead.

Living with visual and physical impairments presents a new set of challenges

Why am I telling you all this? Because I’m not alone, although there aren’t that many of us out there. Living with a physical and a sensory impairment actually adds up to a whole new set of challenges: I not only have the fear of falling, I’m also much less likely to see something on the ground and therefore trip over it. As I get older, I am less and less inclined to walk around in an unfamiliar environment without someone next to me. People at home have to be careful not to leave things on the floor or on the stairs because the chances are I just won’t see them.

Bioptic glasses for visually impaired peopleWith age comes a delightful new problem in the form of a cataract. It was identified by Moorfields Eye Hospital some time ago, but if I don’t have this treated, I will lose what little vision I have. The consultant ophthalmologist is obviously reluctant to do what is usually a routine operation because if anything went wrong, I would be left completely sightless.

Reaching out to others to swap helpful ideas and provide support

Together with my good friend and fellow Society trustee, Mandy De La Mare, we decided to float the idea of a Meetup group so that those of us who have both physical and vision challenges, could swap ideas and talk about what we might need from the Trust now, and in the future.

glasses with smart device for visually impaired peopleThe first few meetings have been of three or four of us coming together to talk about how living with impaired vision and thalidomide physical disabilities affects their everyday lives.

What kind of apps do you use on your phone?
Which other aids and adaptations are helpful?
What is being researched that we might tap into?
Do our Trust staff know enough about impaired vision to give us the support that we so obviously need?
Is it safe to go ahead with that cataract op?

Join the Meetup group

We would really like more people to join the group and – between Meetups – to pop into our WhatsApp group.

It’s really important that those of us who do have this set of challenges are there to support each other and to help our brilliant Trust staff to understand our needs better.

Email Geoff about joining the Meetup and WhatsApp group

 

Read more from the NAC in the full Spring 2022 Newsletter (PDF)

More about aids for people with visual impairment

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Mandy wearing OrCam glasses

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