Pride Can Get In the Way

Or is it stubbornness? Wanting, no..needing some semblance of independence?

Helping Hand

When someone lives with a disablity or two or more, it's like being caught between a rock and a hard place. You want to prove you can do things on your own. You may get a little angry that someone underestimates your capablities and gives you "unwanted" help (even if you know you could use a little help).

It's a pride thing. Most of all, you want to prove it to yourself. I CAN DO IT.

But, sometimes it backfires. You do "normal" things. You are not "forgetting" your limitations. You are doing what you CAN do. Then some people look at you and think that you are "faking" it. They begin to think that you aren't "blind". They don't understand. How could they?

Picture this scenario: A person is standing in line at the checkout area, browsing through a magazine. But this person has a white cane leaning against the grocery cart. Other shoppers saw her sweep the cane while tugging the cart behind her. Some even saw her reading labels. Some give her dirty looks, thinking, "She's not blind."

Some people have the mistaken conception that those who use the cane are totally blind. Not true. I have touched on this topic before, but more about how I worry that people will think I am faking it. Now I want to give you a little more insight.

Reading this article, I could relate to some of the things that he said.

Here are examples:

"As a disabled person, there’s certain times that I don’t want to appear to need that much help. ...Roosevelt by 1932 was still able to walk a certain distance, but not quickly, and he wanted to walk in, he wanted the country to see him standing, and but what happened was, when he started to walk, and he got toward the end, he was starting to be a little jittery, that a bunch of supporters, thinking they were helping him, grabbed him and picked him up and carried him in. And you see in this picture — and I couldn’t really see it, but he described it to me — he has this stern, angry look, because they messed up his moment.

And I know what he was feeling. Because sometimes you want to project a certain amount of strength. And you can project it if you’re a woman, you can project it if you’re disabled, you can project it, but often the people who love you don’t see the need for you to project it."

There are some people who worry too much about what I can or can't do and they step in. Sometimes I appreciate it, sometimes I get frustrated. I CAN DO IT!!

"When I am in places where I am familiar, I will appear to see better than in places where I’m not. If I walked around my house, and you didn’t know, you’d probably think I have no vision problems."

I can get around in my own home. It's familiar territory. When I know where everything is, I'm fine. I'm "normal". I know where the pews are at church. I know where all the landmarks are. But if you switch things around on me, it will take me time to get used to it. For instance, I may have gone to a certain store often. Now they moved things. Sure, it might be a tactic to get shoppers to move around the store more to look for that item, but it can lead to impulsive buying. I'll manage to navigate unfamiliar territory, but it's frustrating. I want to know where everything is.

"When I say I saw something, it’s more like I sensed it."

I have a different take on this because of the RP. I have what is called "islands of vision" or holes in my peripheral vision. It's like having horse's blinders on, but poke some holes here and there. Sometimes, I'll "sense" movement and turn to look directly at it (my central vision is still good) to see what caught my attention. I want to point out that not all RP cases are the same. Some RPers don't have any peripheral vision at all. What I see is unique, but similar. The progression rate is different for all of us, too.

"...as soon as people see that I can be independent, they hold me to the standard that everyone else is. So I remember once I told the airlines that I had a sight problem, and they put me on this bus to go to a hotel because there were no other flights out of the airport that night, and I gave up my seat to everyone got on and they passed me, and then like this 90-year-old woman, who was trying to get up the steps, and I couldn’t take it anymore so I helped her up the steps, gave her my seat and took another seat. First stop, the bus driver tells me to get off. And I know that he’s doing this now because he thinks I have no problem. He goes, “Go that way.” And I almost fell in the wishing well in front of this hotel. That’s because he saw me able to fend for myself."

That's the thing: A catch 22 situation--you're darned if you do, and you are darned if you don't. Some people are too judgmental. That's why it's so important to educate the public. For advocacy. To get the word out so that people can "understand". Having a disablity isn't an all or nothing kind of thing. You are just limited, but you can still do things.

"So I think I have now learned — and I’m not doing this to be deceptive — but I don’t act the way I did when I was 17, like I can do everything myself, because I realized the minute I do that, no one helps me. So I learned to be a little more pragmatic about life. "

I may still act independent; I don't like to ask for assistance. Maybe it's because I am a woman and women are considered "weak". It's easier to ask for help as far as my hearing goes, but I have lived with it all my life. The RP journey I am on is a slow, frustrating thing.

I can't imagine how RP can be for a man who thinks he has to be the provider, the "strong" one. I guess that's another topic for another day.