NOAH AOC

Hi, I am vision impaired and am a professional in the field of blindness.  I have been asked to speak at a conference for people with albinism and am puzzled as to how to approach the workshop I've been asked to run.  I assume that people are pretty knowledgable about vision impairment and how to cope, so I've been asked to share my personal experience of living with low vision.  But I do not have albinism.  What would you want to hear from me?  What would you NOT want to hear?  Thanks for your ideas. 

Speaking as a parent of 2 young children with OCA1 (3y and an infant 2m), I'm bothered by the lack of information regarding expected developmental milestones and problems/delays for those born with low vision.  It seems most feedback regarding those issues is anecdotal at best, and most professional feedback is simply comparing to "normal" milestones.  I'd certainly love to have someone knowledgeable contextualize child development within the population of those with low vision.

I think the last suggestion is outstanding.

Don't be too quick to assume that everyone knows everything about coping with low vision. You might talk about what coping mechansims you have used that work well for you, especially in school growing up, and in the workplace as an adult. Parents expecially will be looking for guidance as to what services and aids are available, and how to access them. Everybody's work experience is different, so we can always learn new tips from each other.

I don't think you could go wrong telling how you handle the social consequences of trying to get along in a fully-sighted world. For esample, when I go into a fast food restaurant and ask what kind of sandwhiches or drinks they have, they usually point to the small menu high on the wall way behind them, and tell me it's all there. If I respond that I know it's there but I can't read it, they often look at me as if I'm lying. So, short of hitting them over the head with a white cane, how do you suggest handling fast food cashiers? (Or do you just order a cheeseburger and chocolate shake, and forget about it?)

 And while you may not suffer the same indignities we do because of hair and skin color,I know you do encounter similar ignorance in response to your visual limitations. (One of my personal favorites is, "You should go see my eye doctor.") That discussion is another way to develop a connection with your audience.

You get the idea. All the best!

Joan