"RP" what is it...

Retinitis Pigmentosa, or RP, as it is called, is a genetic disorder in the retina which causes Night blindness, tunnel vision, color blindness and eventually leaves one with little to zero vision. I rarely if at all talk about this because I do not want to give the impression that I feel sorry for myself or want others to do so.

It is however not an easy thing to deal with. I am grateful for the time I was able to see fairly well. I never was able to see at night time or dimly lit places. I did not use a cane at that time so I did have a difficult time. Most people, not all, could not understand how one could move around well in the daytime but not be able to do so at night. I recall going to weddings and other partys where I could not see anything except an occasional flashing light. I could not even see the food in front of me. I did my best to act it out.

School was a difficult thing. My teachers were not very good at understanding my needs. When I would say that I could not see the blackboard, I would be told to put on my glasses, which I already had on. I remember that when we lined-up to go home I would try to read and remember everything that was on the board so I could do my work. Gym was another trial. I could do all exercises as long as it did not involve moving objects such as a basketball. I could not see anything on either side of me and when a ball was thrown directly to me, I could not see it until it had hit me. Yes, my mom did get letters signed by a doctor stating that I should not be expected to participate in certain activities, but the gym teachers did not take the time to understand or even care. I recall more than once watching the teacher rip up the note from the doctor while stating that I was not going to get out of participating with a doctors note. I was just a kid so I did not pursue this in anyway. I did my best. When I got to high school I faced the same problem and it was very difficult to deal with. I recall that we would shower after gym and our gym teacher would throw us a towell to dry ourselves, well needless to say my towel would end up on the wet floor. I hated this so I started to avoid gym all together. I failed that class, but I did not care. I wanted to be like everyone else but it was out of my control. There were many very embarrassing situations. I would bump into people in the hallways and walk into open doors and stuff like that. I did not complain to anyone because I knew there was little anyone could do. I was not aware of special schools or reading materials available to me at the time. Doctors never told my mom that these were availablr either. I would come home and yell and scream and punch a wall or two to relieve my frustration.

Well time moved on and so did I. As time moved on so did RP. It has taken all my sight with the only thing left is the ability to see bright lights. This is called light-perception. I could see bright lights but I would not dare follow them. Why? Because When I see a light it is scattered all over the place so I would have to guess where the light was really coming from. I remember that when this started to happen I would look towards an open door and see more that one outlet. Many times I would choose the wrong one and run right in to the wall. This not only happened in my house but out in public.

As you can see it would be easy to feel sorry for myself. But what would I gain by doing so? Nothing at all. You just go on doing the best you can to educate those around you about this "RP" and hope that they understand or even care enough to do some reading on the subject so that they can better assist someone they may encounter with this. I hope that young children with RP are given everything available to them so that their lives could be as normal as possible. Technology has come a long way since I was a kid. I never thought I would be sitting in front of a computer typing away. Never did I think I would have the ability to communicate in such a way. It is great! I have learned many things which I very possibly would not have it not for the advancement in technology.

So as you see, while there were so many individuals in my life who did not take the time to understand what I was going through, there were others in the world who were working to improve things for me. These individuals have made available to me things such as ZOOMTEXT, my screen-reader, Trekker Breeze, my talking GPS and what is of more value than any physical item, is the education of the general public to make them aware of us. We are here and we are not leaving. We are a part of society and we want to be included. We want all the opportunities made availablr to the general public to also be made available to us through adaptive technology. Don't look at our disability, look at our tremendous abilities!!!