Thursday, March 13, 2008

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.

" 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.



At Thu Mar 13, 08:04:00 AM , Blogger Betts4 said...

As someone with a disability, I understand what you are saying. I have epilepsy and what happens is that certain things can trigger seizures even with me taking medication and such. Bright sunlight, stress, my period and extreme heat/humidity. All can make me have my seizures.

I have to watch those things all the time and yet, I want to be out in the summer, I want to do things like others in my family do. I can't, but they see me do it one weekend and think I can do it all summer. Well that one weekend it may just have been overcast and not a threat.

I try to explain but without them experiencing it, they don't understand.

Your blog explains it very well. Thank you.

At Thu Mar 13, 08:59:00 PM , Blogger Candice said...

This is so hard to teach both of my children. They each of their own things that they need additional help with things. Rebecca, who also has Ushers, sometimes really wants help (for attention, I'm sure) and then other times wants to be on her own. I really praise her when she does something on her own or at least tries it on her own first.

I was thinking about where you were talking about educating the pubic. Over the past year, I have tried to learn more about Ushers. One thing that I didn't know until I went to the meeting was the blind does not mean "blind". I considered Rebecca visually impaired, not blind - but come to find out she is blind. I try to use that word more when I'm around others because I want them to know that blind does not mean "absolutely cannot see a thing - blind".

You continue to be an inspiration! Thank you for writing.

At Thu Mar 13, 09:53:00 PM , Blogger Kila said...

Very good post, thank you.

At Thu Mar 13, 11:20:00 PM , Blogger Shari said...

Betts4-Thanks for stopping by. More and more I realize how other "disablities" are similar as to the "CAN DO" thing. Sometimes you can, sometimes you need help. Thank you for showing me another aspect of a condition that can be "misunderstod".

Candice-You know, more and more, I think about maybe advocating more about deafblindness. It's just nor the right time now, with classes, with maybe a CI, and other things I want to take care of. But it's something I may want to do in the future.

Kila-You're welcome. Education is key. Just like ADD and autism. The more the public knows, the better the myths cleared up and people can understand a little bit more than they did before.

At Fri Mar 14, 11:10:00 PM , Blogger Laura said...

Thank you shari. I know I have said it before, but what you write here is invaluable. My heart problems haven't stopped me yet and the RA is at bay I am grateful for that, but no one understands the flare ups. You really are a beacon.

At Sun Mar 16, 08:55:00 AM , Blogger Abbie said...

This is a great post! I understood every single point that you mentioned. I have been accused of the "catch 22" and it drives me nuts.

"Your not deaf!" - I beg differ.

Hat tip to you!

BTW Have you heard any updates about the CI approval?

At Sun Mar 16, 09:36:00 AM , Blogger Shari said...

Laura-You know the saying, "It takes one to know one"? It's so true. Unless they've been there or have something to empathize with, how can they understand? All you have to do is go day to day and explain when you need to.

Abbie-I get that, too. I look "normal". I seem to hear and see so it's hard for others to understand. One day, I was at the grocery store checking out items. Unsully I keep an eye out for "paper or plastic" but I got busy just unloading the contents of my cart. All of a sudden, an interpreter just happened to be there and she told me that a shopper behind me yelled out that I was "deaf". I did not know who she was-maybe a student at the campus? The cashier had the after-effects of a surprised look on her face. I've checked out things with her before. You just never know if a person ahead of you has some kind of condition.

Recipe: Educate. Advocate. Repeat as if necessary.


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