Disability Studies Quarterly
Winter 2004, Volume 24, No. 1
<www.dsq-sds.org>
Copyright 2004 by the Society
for Disability Studies


A Little Help From My Friends

John Sanders
Honorary Vice President, Nystagmus Network
Cardiff, UK
E-mail: johnsanders@clara.co.uk

You won't find many references to nystagmus -- the eye condition I have -- in fiction or film. When you do, they're generally negative. For example, in his novel The Citadel, A.J. Cronin suggests that coal-miners fake nystagmus to sign off work as sick. The few screen actors with nystagmus are generally cast as villains, almost certainly because their wobbly eyes are deemed to give them an untrustworthy appearance.

Yet books and films such as "Rain Man," "My Left Foot," "Children of a Lesser God" and the Helen Keller story often present disability in a positive, even inspirational, way. Moreover, they tend to have greater impact than other forms of information. For example, compare the following factual description of nystagmus:

Nystagmus is a form of visual impairment. It is an involuntary eye movement which cannot be corrected by spectacles or contact lenses (Nystagmus Network newsletter).

with the opening paragraph of a story about the condition:

The school hall was spinning wildly. The floor was coming up to meet the ceiling. All four walls were going off for a little meeting in one corner, then scurrying off somewhere else, now they were flying through the roof. The windows had crashed into the doors and were racing around the room in different directions. The lights were bouncing off the window panes and having a party somewhere behind Frank's eyes (Tales of Northwick, p. 29).
All The Lonely People

For disabled people too, sharing experiences is important. Reading, seeing, or hearing about how others live with the same challenges can help overcome feelings of isolation and loneliness. The following comment is typical of the responses to Tales of Northwick: "As a child I would have loved to have stories of a bear with wobbly eyes like mine, as I knew of no-one else like me" (email to author).

I had felt just as isolated until I became involved with the Nystagmus Network, the nystagmus support group in the UK. The group's fact sheets and information leaflets explain the practical aspects of nystagmus. However, it always rankled that I knew of no positive images of nystagmus in fiction or film. Raising the finance for a Hollywood blockbuster was a daunting task. As a journalist, the obvious thing to do instead was write.

The first Northwick story was intended as a quirky, one-off report about an Annual General Meeting for the Nystagmus Network newsletter. We know that people benefit from meeting others at these events. However, we also know that it takes a lot of courage to attend. In doing so, they are acknowledging that they or their child have a disability and that they are seeking experienced support. Consequently, my goal was to convey the positive, even exciting, atmosphere at these meetings. The last thing I wanted to do was paint a picture of a dry, tedious event dominated by formal votes, points of order and motions to the chair. It wasn't like that anyway. So, I described the meeting through the eyes of a teddy bear we raffled on the day. That emphasised both the fun element and that the meeting was child friendly. Through the bear, I also introduced humour. That was important for me, since laughing about our disabilities helps us to get on with our lives. When visually impaired people get together, we often laugh about the problems we face. We even share that humour with fully sighted friends and family.

Paperback Writer

After that first story, encouraged by others, it was a small step to writing a story for the newsletter every three months. I stayed with children's stories because parents of children with nystagmus are the largest group within the Nystagmus Network. Nystagmus is often not inherited, so parents cannot turn to other family members for information. Likewise, most medical professionals focus on the clinical aspects of nystagmus and know little of its day-to-day impact. By drawing on my own experiences, I try to give parents and others an insight into what it's like to have nystagmus. The stories also aim to provide young children with the words to describe how they see. It is difficult for them to explain nystagmus, because to them their vision is normal.

In addition, the stories are a safe or neutral area. Parents and children can learn about and discuss nystagmus together through the characters in the stories, especially Northwick the Bear and his friend Frank. As one parent said: "Thanks so much for the stories. They have really helped Jake and I talk about things" (letter to author). That shared understanding of disability is vital to a child's development. The more the parents know, the happier they are and the better they can explain this complex condition to others. This is especially important, for example, when children start school and their teachers need to be aware of the needs of a disabled child.

The stories aren't just for children with nystagmus though. They are also useful for normally sighted children whose parents or brothers and sisters have nystagmus. They can even help adults with nystagmus, as one confided to me: "You have mentioned so many things I never knew were due to my eyes, like thinking cars were going to crash in car parks and those annoying lights on the floor in cinemas. Everyone else thought I was crazy when I asked if those lights made them feel dizzy" (letter to author).

Good Vibrations

As well as explaining the effects of nystagmus on vision, the stories address some of the social and emotional consequences of having "wobbly eyes." Stories are ideal for this, because they offer a way of sharing and exploring experiences, including, happiness, sadness, frustration and disappointment. They also help children realise it's OK to have nystagmus. That's very important in a world where parents are often told that, because of poor vision, their child won't be able to drive, won't be able to play sports and may be limited in terms of opportunities in education and employment.

In Tales of Northwick the emphasis is on what we can do, instead of what we can't do. Each story explores one or more of the problems of having nystagmus, while also suggesting solutions and presenting positive images. Where things are truly difficult, such as in playing fast moving sports, the stories show an alternative, as the following comment illustrates: "I've just read your latest story to my five year old son who sat (unusually) quietly and listened to every word. Tom has nystagmus and ocular albinism and has found life quite difficult during the [2002 football] World Cup...We've all done our very best to assure him that it's OK not to be interested in football, but I think that he's still felt pretty isolated at times...Thank you for making it OK not to like football" (letter to author).

Reading Between the Lines

Finally, because nystagmus is not always an obvious disability, another aim of the stories is to show that the problems are genuine, that they are shared by others and that there are no quick medical solutions. Sometimes it's easier, or perhaps more diplomatic and credible, to get that message across in the written rather than the spoken word. Several people have told me the book is an effective way to tell their relations and friends about the condition. As one of my younger readers explained far better than I ever could: "I am probably going to get my friends to read it so that they can find out more about nystagmus without knowing it" (email to author).

References:

Nystagmus Network newsletter, April 2003.

Sanders, J. 2001.Tales of Northwick, published by the Nystagmus Network, Cardiff. To order a copy of tales of Northwick, please go to www.nystagmusnet.orgor Northwick, 25 Pen-y-Lan Terrace, Cardiff, CF23 9EU, UK.

Other quotes are from confidential correspondence through the Nystagmus Network.

Subheadings: With thanks to The Beatles.

Biographical note:

John Sanders was born in Cornwall, England, in 1957 and was soon diagnosed with nystagmus. It was 27 years before he talked to anyone else with the condition. Much of his spare time is taken up by voluntary work for the Nystagmus Network, RNIB Cymru and Cardiff Institute for the Blind. Sanders graduated in German, French and Business Studies from Liverpool Polytechnic in 1979. He has been a journalist, editor and translator for over 20 years, including 10 years with the Reuters news agency. He lives and works as a freelance writer in Cardiff. His email address is johnsanders@clara.co.uk.

Note: Anyone requesting DSQ's permission to publish this article elsewhere is asked to notify John Sanders also.





Copyright (c) 2004 John Sanders



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