I want to get something straight, just because people are classified as 'legally blind' it DOES NOT mean that they have the same level of vision, experiences, confidence or abilities as the next person. The assumption that we all share the same experience is incorrect.
Now I understand that I can't expect everybody to understand what I am going through, but I at least expect from people in certain positions to have a degree of empathy and knowledge that people with disabilities needs differ. No two people's experiences are the same. There a so many factors that come into play.
Stargardt's Disease and other inherited retinal diseases such as Retinitis Pigmentosa are degenerative diseases. Vision deteriorates over time. Progression may be rapid or slow, it may start when you're in school or when you're an adult. Vision can stay stable for a period of time and then deteriorate dramatically. No two people share the same experience of vision loss.
In my case, I have been losing my vision for five years. My vision has decreased from 6/15 to 6/60 in that time. When you start to lose your vision you go through a process of adaptation; adapting to the world, viewing it in a new way and finding different ways of doing things. There is also a grieving process (I've written about it here) and each time my vision deteriorates, I go through it all again.
Every person has a unique experience, has developed different coping mechanisms and is at a different stage of acceptance. To assume that because two people are both 'legally blind' that they share a common experience is untrue.
Never assume a person's ability and experience. Ask questions. Be open to suggestions. Be helpful. Listen. Be empathetic and not sympathetic. Be positive. Be part of changing the perception of people with a vision impairment.
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It is very important for the doctors to identify the Symptoms of Retinitis Pigmentosa in order to diagnose it and advise the most accurate Treatment of Retinitis Pigmentosa to help patients get rid of it.
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