"He doesn't look blind"
I know they don't mean any harm when they say it, but it kills me every time. No, my son doesn't look blind. As a matter of fact he's not totally blind. My son is legally blind. There's a huge difference. Everyday we are grateful that he has some vision. However, just because he doesn't look blind, doesn't mean that he can do everything fully sighted people can do, without some accommodations anyway. That's why he has an IEP with accommodations. That's why he is a part of the Division of Blind Services. That's why he is in the Transitions Group at ILAB. He needs to learn how to succeed despite his vision impairment and he will use whatever tools are available. The last thing he needs is a teacher (or a coach) saying "he doesn't look blind" and then ignoring the fact that he needs accommodations.
The fact is, his disease is degenerative. So, one day, he could be totally blind (we hope that NEVER happens). It takes a strong human being to go through life everyday with a visual impairment. It takes an even stronger one to know that your vision can get worse and worse and God forbid go away completely. My son is one of the strongest people I know.
There's nothing that can be done to fix it. Another famous line from people: "He wears glasses. Doesn't that fix the problem?" No it doesn't. That fixes his astigmatism. Without his glasses, he wouldn't even be able to see the E at the top of the eye chart.
Another question I get frequently: "Why can't they do an eye transplant?" Because it's a retinal disease. An eye transplant is really a cornea transplant. The retina is behind the cornea. The retina is what takes in the light and reflects it to the brain so people can see. The retina cannot be transplanted at this time. We hope one day that changes.
Another thing I hear all the time is: "I'm so sorry." I don't want anyone to feel sorry for us, especially my son. Instead, I want everyone to help join our fight to cure these retinal degenerative diseases so my son and the other 10 million people in the United States dealing with similar diseases will never have to worry about losing their sight.
To me, losing sight means not being able to see my husband's face when he smiles at me. It means not being able to watch my child grow up. It means never being able to drive. It means living in darkness. Please help us make sure this doesn't happen to people anymore. The world is a beautiful place and everyone deserves to see that beauty. There are many ways you can help. Just email us at mailto:firstname.lastname@example.org if you want to get involved.