Several weeks ago I met with this remarkably confident, intelligent teenager who has RP. Her and her mom read our blog and live in the same area as I do, so her mom thought it would be helpful for her to talk with someone who has “been there”.

While I had hoped to provide all kinds of helpful mentoring during our meeting, I walked away feeling like I had been given some wisdom in regard to a fear I have: cane use.

Even though I received mobility instruction (aka: cane training) during grad school 10 years ago, I have felt too self-concious to use my cane in public despite the fact that it could really help prevent my many run-ins with objects and people.

This young lady shared with me about how she began using a cane mid-semester in her junior year of high school this past year after she ran into a garbage can and another student. Though my vision was less than hers when I was in high school, I tried to imagine myself using a cane in the hallways of Naperville North and felt my face flush red just thinking about it.

She went on to say that it was difficult at first, answering questions from students wondering why she was using a cane when it looked like she could see or why she started using it all of a sudden. But she persevered and continued to navigate the hallways of her high school confidently. I think about all the people she has been able to educate about low vision just by using her cane in school.

And I think about all my missed opportunities to educate people about low vision and RP– people I’ve allowed to believe I am inebriated or rude or ditzy instead of simply showing them that I can’t see well.

So the day after I met with this courageous young woman, I decided to at least just start carrying my collapsible cane in my bag so that I could pull it out when needed. I’ve used it now 4 times in public in the past few weeks– more times than I’ve used it in the past 10 years.

I used it at the DMV when going to renew my state id, which ended up paying off because apparently they waive the $20 fee if you are visually impaired.  One odd thing I noticed was that everyone I came in contact with, whether DMV worker or patron, called me “honey”, “hon”, or “sweetie”.  Since I don’t live in Texas, I got a little paranoid that it was because of the cane.  But maybe it was just some weird DMV lingo or something.  Or the DMV’s recent attempt to make their facilities more pleasant.  Anyways…

The second place I used it was in the library with my girls (a place where I’ve had the most “run ins” because it’s going from light to dark in a crowded, smaller space).  My paranoia at the library is that people will see me reading a book aloud to my kids after setting down my cane and think that I’m faking blindness, but a good friend pointed out that there are far better ways to get attention than blindness, so it’s not a very likely assumption.  Plus, it provides a great opportunity to educate people if they ask about it, which actually brings me to the third place I used it– the train station.

My girls and I rode the train to Aurora– a nice, short ride– a few weeks ago and absolutely loved it.  As we were waiting for the train, my 2-year-old was having the time of her life playing with my cane– swinging it around like a baton and whacking her teddy bear in the face with it.  A man asked me whether I could see anything because he was nervous that she was going to hit me with it.  I explained to him that I could, much to his relief.  And considering that only 10 percent of legally blind people are actually totally blind, I do think it’s important to educate the public about the other 90 percent of people who they may see using canes.  (http://en.wikipedia.org/wiki/Blindness)

The final cane use was the most difficult for me because it was while we were out with friends. The DMV and library were relatively easy because everyone around me were strangers. But there’s something about pulling out my cane in front of family and friends that is the most difficult for me even though I know they would be supportive (and probably relieved they don’t have to drag me around in crowded places!). Typically when I’m with people I know, I link arms with them when it gets dark or crowded so that I can find my way around, but when we were walking downtown a couple weeks ago, it was literally 102 degrees of pure steam outside, and I really didn’t want to make one of our friends even hotter by linking sticky arms. Plus, these particular friends are two of the most non-judgmental, laid-back people I know, so they made it easy to be matter-of-fact when pulling out my cane. In fact, I loved how my friend simply explained to her son, who was curious about the cane, that it was helping me not run into anything– no long, drawn-out explanation or stumbling over words– just a simple, true statement.

I’ve been trying to figure out why simple, true statements don’t come to my mind when it’s time to pull out my cane. Instead of thinking “this will help me not run into anything”, I start writing a novel in my head about all the many things using a cane says about me and all of the crazy assumptions people will make. If I use it walking Lucy to school so that I’m not constantly running into a crowd of kids and parents, for example, what will the other parents think of me, and will they still trust me to supervise their kids for playdates at my house?  I can admit that about half of the thoughts that run through my mind are ridiculous, but there are also some real fears here.

And after joining a Facebook conversation about cane use (Room With a View ladies’ rock!), I know I am not the only one. One of the women in the group actually coined the term “cane-o-phobia”, and it’s interesting to read comments all over the spectrum– from people who are terrified of the idea to people who are comfortable with it but whose families are not, and people who are so adamant about cane use that I’m slightly afraid they’d use it as a weapon (kidding, of course, but they do scare me a little).  One simple comment that helped put things in perspective for me said, “None of us want to be labeled as disabled, yet we want to be accommodated. Having some sort of visible signal empowers others to be helpful. Not everyone’s great at it [being helpful], but I think the benefits far outweigh the stares and rude people.”

So here’s where I’m at with it at this very moment: I want to start using it regularly but don’t even know if I’m really holding it correctly. I put a call into the department of rehabiiliation, have faxed them my medical documents, and am now awaiting a mobility instructor. Ironically, my sister and I, living 2000 miles apart and having very little discussion about this, actually each indiividually called our state’s rehab offices on the same day. Jenelle has her own thoughts on the subject, so I will let her share from her perspective, though we have joked about having a “coming out” week (similar to the undocumented immigrants who have come out recently!) in which we both start using our canes regularly. Until then, I will be okay with pulling it out randomly and somewhat awkwardly, knowing that it’s a start.

20120730-093636.jpg

(Visited 221 times, 1 visits today)

14 thoughts on “Cane-o-Phobia

  1. I’m so glad you have become more comfortable with your cane. I thought it would be a huge adjustment for me, and it was a bit of one, but it really is my constant companion now. I can’t believe how much easier traveling about has become! I don’t have to worry about running over children and stepping on dogs/cats, and I almost never trip over an uneven sidewalk anymore! I haven’t had to pick myself up off of the ground since I took up using my cane either, and that in and of itself is alone worth it all!

    • That is very encouraging to hear! I guess when you look at it that way (all the avoided accidents), it’s an easy decision!

  2. Thank you so much for sharing with us. Your honest evaluation is refreshing,as is your friend’s simple explanation of “the cane” to her son.

    I recently took my Dad out to lunch. He has a “telescoping” cane, meaning each section fits into the next for collapsing his cane. This is the exact same way my boys’ Star Wars lightsabers collapse. Of course, my seven year olds immediately challenged Papa to a duel, which he declined, saying, “I need my cane to see things. I don’t want it bent or broken.” My son, Marcus, went on to say, “When I am grown up, my cane will be indestructable! Useful as a weapon and a guide!” He illustrated with his light saber, closing his eyes and spinning wildly as only a seven yer old can do.

    I am not sure when my boys will get their first canes, but after reading your perspective, I am not as terrified or heartbroken about it. Thank you again.

    • Oh my gosh, that’s hilarious! It sounds like you’ll be protected when you’re with your son in the future since he’ll be able to walk independently AND defend himself with a weapon all-in-one! Have you ever been to an NFB conference or any vision-related conference? I am amazed at the little children walking around with small child-size canes– I hope it doesn’t sound rude or strange to call them cute, but they honestly look so adorable walking around with these little canes, and also so confident. I wonder if it would be more second-nature to me if I had started using one as a child.

      I’m glad that the thought of your boys using a cane isn’t quite as scary after reading this. We’ll keep you updated for sure!

  3. This is very well written.
    We are SO proud of you! For your blog and your amazing life.
    Aunt Colleen and family

  4. Once again, you are always so on target with what I am experiencing in my life! We are planning a trip to France next summer with two very understanding friends but at first,I was so reluctant because of stairs,changes in terrain, etc. Then I remembered the cane I had gotten from mobility training and decided I would start practicing up with it…I never want to use it around where I live/teach as then I woule have to deal with the aftermath of all of the parents who would be calling the principal to say I should not be teaching…why don’t I reture!! It is so good to hear your progressive steps with the cane…your little girls will join in to help you with your new adventure. God bless you.. Linda (Kate’s mom)

    • Merci, Linda! I love it when I find out someone is going through very similar experiences, thoughts, concerns, etc. Yes, traveling can be challenging. I forgot to mention in this entry that I did use my cane a few years ago while traveling to Paraguay on a mission trip. I used it in the airports a lot, and while it was really helpful, I had trouble accepting help from a few over-eager fellow travelers who wanted to dote on me. It’s such a fine line, and our pride can be so fragile. And the employment issue is so tough too– I struggled every day as a teacher, wondering if a parent would complain after I told the students about my vision at the beginning of each school year. I really hope your principal and co-workers are supportive. And I really hope you go to France and have a fabulous time next summer!

  5. Congrats on coming out of your cane closet. It just gets easier and easier to use the more you use it. Embrace the blindness!!

    • Thanks Sandy! I sure hope it gets easier! For as many times as I have preached “embrace” to others, I find it challenging to do on the hard days. One step (or tap!) at a time, I suppose!

  6. Another well written blog! You are an amazing writer and lovely woman. I can’t wait to see you soon, and hope to see you with “cane in hand!”

  7. I am still wrestling with the thought of the cane. I don’t own one (yet) and I guess it is the thought of showing the handicap that scares me the most. I know all of my family and friends would be nonchalant about it but there is something stuck in my head about actually being in public…. I guess you can only try to act the tough guy role for so long though and this well written account gives me cause to re-think my drink on these thoughts. Thank you for sharing these great stories with all of us. Ya’ll are a incredible asset to those of us still trying to come to grips with a life that is truly different from the rest.

    • I’m right here with ya, Scott– it’s one thing to write a blog entry about using a cane, but when I’m actually out there in public, feeling vulnerable, self-conscious and like I just want to look norma, all the logical thoughts that I just wrote about fly out the window and hide underneath my pride. A couple friends just joked about decking out my cane to look really interesting or cool to help me have the “yeah, this is how I roll” attitude, and I think there’s actually something to that mentality (or at least maybe people would be thinking more about how decked out the cane looks and not about my blindness if I did that!) Not sure how well that would go along with your “tough guy” image, but maybe you could put chains on it or something (ha ha– kidding!) At this point, we really do need to laugh about it, though. Thanks for reading, and I am of course grateful that our stories are helpful.

  8. i am learning so much by reading these blogs. you are an incredible help to so many with this great advice. love, mom

  9. Thanks for sharing Joy!! This was really wonderful! So proud of you! When Emily’s orientation and mobility instructor first introduced her to the cane I was SO resentful!! I definitely didn’t want her labeled! However we let her dictate when she wanted to use it – with rare reminders from us. Eventually this smart young lady realized that using the cane in unfamiliar or crowded places prevented more embarrassment than it created!! She is wise, brave and my inspiration. Because of Emily, I am now currently enrolled in grad school and will become a teacher of visually impaired as well as an orientation and mobility instructor!!! Emily’s journey has taught and continues to teach me so much. Now this knowledge will be shared and paid forward. What a blessing indeed!!

Comments are closed.