Outrageous claim: I may be going blind, but I’m not a moron.

I’m in the middle of a heated debate with the leaders of a support group for people with retinitis pigmentosa. I was diagnosed with RP at age 13 and have been riding the line of legal blindness for about ten years.

Quick background: RP is a degenerative eye disease that causes light and color receptors in the retina (rods and cones) to die. It starts at the outside of the retina, so it affects peripheral and low-light vision in early stages. The result of this is severe tunnel vision, which manifests (at least in my case) as clumsiness and/or rudeness. (I’ve unknowingly snubbed many a handshake in my time.) Later stages bring about waterlogging in the retina, which blurs central vision. Progression of both of these eventually leads to total blindness, though the rate of progression varies from person to person. There is no cure.

The group in question recently posted an article on their blog about how to sign up for Twitter, which was the catalyst for this debate. The article makes no mention of RP (i.e., how to use social media to connect with organizations involved with RP or other RP patients). It is literally a Twitter instruction manual. I have been known to be sensitive about certain topics, especially where RP is involved, but I found the inclusion of this article on the group’s blog condescending and offensive.

I recently heard a story on NPR about Katherine Bouton, who discussed the effects of spontaneous deafness in one ear. She authors a book called Shouting Won’t Help, and it really struck a chord with me. When someone has RP, it’s not always obvious, which has pros and cons. On one hand, an RP patient may be met with situations that make them appear clumsy, rude, drunk and/or stupid, such as these things that have happened to me:

Tripping over an unsupervised toddler at the movie theatre and dropping a jumbo tub of popcorn

Failing as a floor hockey goalie when the opposite goalie threw the ball across the gym in my direction and scored

Appearing to ignore a new acquaintance, who held his hand up to high-five me in a poorly lit establishment

Routinely knocking over full glasses of wine/pop/water at restaurants

In broad daylight, falling off the curb and onto the street while walking with a new romantic partner

The upside is that I have learned from these things and can take necessary precautions. Just as a person with hearing loss might face away from light sources so that they are better able to lip read, I can make sure I’m walking on the inside of the sidewalk and put my drink in the same place every time I sit down so that I know where it is. The fact that I can’t see well isn’t outwardly apparent to most people, so I get to choose who I tell and when. I’m not nearly as scared of losing my vision as I am about how I will be treated when it becomes obvious to the world that I am blind.

Maybe not all people suffering from vision loss feel this, but I want to maintain as much independence as possible for as long as possible. I might not be a good choice for the dodgeball team, but I can certainly figure out how to sign up for social networking sites myself. The fact that this is being featured on a blog for the RP community sends a message that members must not be smart enough to figure even the simplest things out for themselves. It assumes that RP patients are technology challenged and incapable of logical thinking. They might as well have posted an article about how to tie your shoe.

The author asserts that the article is relevant because another member asked about how to use Twitter, and if the information is useful for one, then others might find it useful as well. This may be true; however, I argue that, even if this is the case, there are FAR better resources available to help people use Twitter. It’s a support group, not a tech blog.

I was a member of an RP support group in London and only went to one event. I was 23 at the time and was the most junior attendee by at least 20 years. It was terrifying to meet a coffee shop full of people wearing sunglasses who had white canes and seeing eye dogs. I kept thinking, “This is my future. This is what’s going to happen to me.”

I was hoping that some people my age — I know they’re out there — would show up and be able to share the concerns that I had. When is the best time to tell new boyfriends that I have RP? Is it worth starting cane training now? When should I stop driving? Which bars and clubs have good lighting, so that I can enjoy nights out with my friends? This is what I’d like from a support group.

In my mind, an RP blog that explains how to enter your email address into a web form is akin to being in the coffee shop for that first and only support group meeting. I want to belong to a support group that I feel comfortable identifying with. The difference is that I simply wasn’t at a stage that allowed me to identify with the group in London.

One of the responsibilities of a support group is to accurately represent its members. I have a lot of trouble identifying with a group that presents me as an idiot.