For people with RP, I have heard and experienced there are two major things (along with a few others) that take a lot of adjusting, coping, grieving, etc. They are: driving and using a cane. When is it time to hang up the keys and not drive anymore? When is it time to start using your cane for both your safety and others? These are both two questions that I’ve dealt with a lot lately.I’d like to discuss the cane in this post.
For those without RP or another progressive visual impairment, it’s kind of hard to explain what it’s like. With that being said, I think my experience was a little different than most, because I have been in school studying the rehabilitation of individuals with disabilities and how amazing assistive technology is.
Transitioning to using a cane is a lot to deal with psychologically and social (hence the title of this post). Psychologically you are putting yourself out there with a clear identification that you are disabled. With RP, it is practically impossible, in normal day to day interactions, for a stranger or peer to label you as having a visual impairment or disability. However, once you start using that cane, it becomes completely obvious. With that, many of your peers will be confused. If you wear glasses, like I do, some may not believe you and think you are faking it. Some may not really know what to think about it and stare. Most people don’t understand that you can be low vision… they think that there is either sighted or no vision, not anything in between. (Saving this more for another post).
There are some people that for some reason or another, can’t handle having others stare at your group when you’re walking and can’t stand that attention. Therefore, I know many people lose friends when they transition to using a cane.
It is also a note to yourself, when you feel that you need to start using a cane, that yes.. your vision is progressing. You always know that in the back of your head but things like this just make it that much more real for you and you have to go through another coping and adjustment period. That’s one thing about progressive vision impairments that make me wish sometimes that I just went completely blind all at once. There are so many different periods of adjustment. I just wish I could get it over all at once.
Imagine using your cane to get to your classroom. Sit down, fold it up, and then start taking notes on either a notebook or on a computer. If your classmates aren’t well educated about low vision or aren’t really aware of your situation, there may be a lot of whispers and stares.
I have been very lucky to have the support of my family in almost everything I do. They are amazing. I think RP has been an adjustment period for us all, so I don’t blame them. But I’ve always felt uneasy using my cane around them. One time when I did start using it recently (after not using it or training with it at all for several years), I had it folded up as my Dad drove up. I hopped in the car with it folded up in my hand and he asked me if I carried it around everywhere. I replied that I had it with me a lot. He didn’t seem pleased. I asked him what’s up and he told me that it “makes me look more disabled than I am.” After he said that, a bunch of red flags started going off in my head. First of all, we really shouldn’t care what others think.. but I know I do. I’m the one that gets all the stares and questions and has to deal with it anyway. Second, I do have a disability and my vision is pretty darn bad. There’s no way around it. Even though this took me a while to reach, I would rather be safe than sorry.
I didn’t think Mom was comfortable with me using it either but recently we got into a discussion about it and she told me I could use it whenever I wanted around her and that if my Dad had problems, just tell him I do really need it. That was so comforting. I tried this out recently.. I was going to travel with a co-worker who I’m not used to and therefore was not entirely comfortable, in regards to mobility. I decided to bring my cane along and use it. I’m so glad I did. I was able to navigate things independently and not have to worry. It was really nice. However, when we were headed to the airport my Dad asked why I was going to use it because airports are so brightly lit. Well, that’s not necessarily a good thing and it’s mostly the peripheral vision (or lack thereof) in this scenario that’s a problem. After I explained a little and my Mom stuck up for me too, Dad understood… I think. He supports me so much with helping me with rides and so much more.. I know it’s just because he doesn’t understand and wants the best for me.
Most everybody has known me as a fully sighted individual so making the transition to using a cane more was tough. After I ordered it, I started using it more and more. I did get a lot of stares (especially when I wore glasses) along with questions from people. But I felt more comfortable. I didn’t have to constantly scan looking for obstacles, and I felt more relaxed. It also helped navigate through crowds because people knew that I didn’t see very well, signaled by the cane, and they moved out of the way.. making it just a little bit easier.
Equipment, regardless of what disability you are using it for, is often hard to start using.. especially if its something for mobility like a cane or wheelchair. However, I think that it really is a matter of “better safe than sorry,” and if it makes more at ease, comfortable, and feel safer.. I don’t see why not. 🙂 I’m getting used to using the cane more, and so is my family and friends. It’s working out! 🙂