A Social Experiment (with Video)


Watch this video before you go further please.

Video description: A prankster named Johal puts on dark sunglasses and uses a mobility cane (not a cane for people with visual impairments) and confronts 4 people with a lottery ticket that has some sort of label saying “WINNER” on it. The first person he came across was while he was standing up against a wall. Someone, appearing middle to high class, walked past and Johal asked if it was a winner, stated that his Mom gave it to him and he was told it was a winner but just wanted to confirm it. He stated he was waiting for his mom to pick him up. The stranger looks at the ticket, and then immediately looks all around checking out his surroundings, and then just walks off. The second person he encounters is while walking and he passes another higher class individual, goes through the same routine. The other individual then states that it isn’t a winner and says that he’ll take care of throwing away the ticket, and then Johal states that he wants to take it back.. they go back and forth. Finally, he takes off his sunglasses and tells the man that he isn’t really blind. The man then drops it on the ground, yells “BULL****” and walks off very upset. Johal then asked two homeless people, the first a guy and then the second a woman. Both told him it was a big winner and Johal rewarded them with $10 for food for their honesty. The guy said he hadn’t ate anything since the day prior.

First, it was a little strange that he was using a mobility cane. And even though it wasn’t the right kind of cane, he could have at least done a little research into how to use a cane.. a little odd but regardless, it worked, people believed that he was blind.

Second, I could yet I couldn’t believe that. As a person with a visual impairment, that is something that we worry about from time to time, that we are going to get taken advantage of. There is a certain amount of trust that we have to have in some people in our community that we don’t really know. As I continue to lose more vision, I can see this becoming more of a concern for me. I still couldn’t believe how blatantly dishonest these people were, and GREEDY! Karma definitely would have come back to bite them. On the other hand, I can believe this.. I have been treated pretty bad due to my disability and there are a lot of crooked people out there. Just seeing this video was a little alarming though.

What are your thoughts?

Would you go up to a pregnant stranger and rub her belly? Do you pet with your mouth?


I would sure hope not. What about taking it down a step and just petting a random stranger’s arm? No? Well there is no difference between petting a pregnant woman’s belly, petting a stranger’s arm, and petting a person’s guide dog or service dog. Seriously. This has just gotten out of control and I am sorry if you feel like I have ranted about this a lot lately, but this is OBNOXIOUS. I was pretty much at my point of being almost angry today and so I feel the need to share why. Do you have popcorn? What about a soda? You may need something because you’re in for the long haul on this one.

We did a decision-making activity in class last night and my “decision” was whether or not to tell every single person that tries to touch Makiko it’s NOT okay. I had to weigh the pros and the cons. Afterward, I was asked about how many times a day we are interfered with. I said 5 on days I just work in my apt and then go to class and 10 on other days. And it is sometimes in between there, sometimes greater, sometimes less. But then this got me thinking and it really doesn’t matter the number as much as the level of impact each individual has. And lately these people have been coming out of the cracks and really impacting us.

So I’ve obviously explained the first part of the title of this post and I’m guessing a lot of you are wondering about the second part. One of my very best friends has a guide dog and we were talking about us having issues with the public. It is going to happen to us ALL. One of the guide dog handlers on a forum I am on said to me, “Welcome to the guide dog community and lifestyle.” And I’m TOTALLY for advocating, and I will continue to tell the people, even if its the same people that I’m telling over, and over again. But anyways, back to our discussion. So we were talking about some experiences we have had recently. She admitted that her dog is probably pet a lot more than she is aware of because she cannot see much of anything anymore. I notice it and I will not stand for it any longer. These dogs are really smart, that is how they are guide dogs. Even if you don’t say their name, if you make eye contact with them, use a certain pitch, have certain body movements, they WILL pick up on it and think you’re talking about them.. aka “petting with your mouth.” If Makiko tries to get your attention, you can tell me subtly but don’t do anything directed anyway toward her direction and you won’t be “petting with your mouth.” Oh how I love that phrase!

Another analogy for you– would you run up to a blind person unannounced, take away their cane, spin them around in many circles, and then run away with their cane? No. Their cane is essentially their eyes and my guide dog is mine. You just don’t do that. This was an analogy my good friend also gave me. Dang I have a lot of great support from individuals with disabilities and without alike. I’ve also thought about saying, “You do realize that you are putting me at risk of getting killed AND harming the $30,000 training of a guide dog? Would you like to pay that money all back AND face legal action?” Now that might be a little extreme but it’s the truth. When I said $30,000 just to clarify, the total cost to place a guide dog with a handler over their lifetime together is close to $60,000 but I’ve heard different smaller numbers about the formal training of the dog part of it. Another one– how would you feel if you, as sighted person, were crossing the street and suddenly someone came and blindfolded you. You knew you weren’t being kidnapped, you were just going to have to make it across the street blindfolded. You heard the surge of traffic coming at you and after you passed the median you knew there were cars also coming in the other direction. You know you’re going to get hit if you stay there, you can’t go back, you can’t go forward, you can’t go to the left or right, or at least you don’t think you can. This is kind of what it feels like when you seriously distract a guide dog from their work. You don’t know what to do, the dog has lost focus, and you’re stuck and your safety is seriously jeopardized. Not cool.

So why does this make me so mad? I could tolerate it until most recently when now it is somewhat reversing Makiko’s training on distractions from people. She still handles the mass vajority of interactions fine. With people who COMPLETELY ignore her and don’t laugh when she does something to the point where she knows she’s getting attention, even if you think it’s subtle (it’s not to her–she’s smart), Makiko doesn’t bother. A few of my classmates have worked really hard to learn all the rules and 99.9% of the time because they DO follow the rules, Makiko doesn’t go to them. For example, I went to lunch with one of them today and Makiko sees this lovely lady at least twice a week. This gal has a dog so probably has some scent on her from it, and this gal is very sweet. She doesn’t pay any attention to Makiko and Makiko rarely ever pays attention to her. Fabulous.. that’s how we need it to work. Now sometimes there are people who also really try hard but Makiko gives them a sniff now and again and that’s not their fault, we gotta work on that ourselves.

With some people, strangers and friends alike, when she is in harness she will make an attempt to do something like rub her nose up against them or something similar and that is NOT okay. And it isn’t this poor girls fault really. I mean, yes, she should know better, but so should I and so should the public. I should have spoken up more and the public needs to keep their hands off. So I was upset about this and I had been wanting to call the Guide Dogs for the Blind Licensed Professional Counselor who is trained to help us with situations like this (for free!) and she helped me a lot. She said many things that were significant. One of the reasons that I am afraid to tell friends more than strangers is because I don’t want to offend them. I like that they like Makiko and they think she’s cute, I love that they support us, and I love them so of course I don’t want to offend them. With strangers I’m not so much worried about this. But what this counselor said to me was, “why is it okay for them to offend you and you not to offend them?” Now she didn’t mean that in the way like they do something, you do it back, but she meant it in the way that they are offending us, whether unintentionally or intentionally, by distracting my eyes and teaching my eyes something that will eventually jeopardize our safety. We are still very much in the bonding stage and still learning what’s okay and what’s not and that cannot be taught to her that its okay. Because right now I’m almost positive her way of thinking is “Oh, someone comes up to talk to Jess or Jess talks to this person for awhile, I get attttentionnnnn.” Sorry sweetie, that’s not how it works. Another thing that this counselor said to me was that I can tell the people that I have to correct this poor sweet little girl who really didn’t do much wrong because of THEIR actions and they led her to believe she can do something she can’t. And this makes total sense. Think about it if you have two toddlers at your house, one being your own and one being a close friend’s child, if the close friend’s child teachers your child something really wrong, you’re going to reprimand that child right? This is a very similar situation and you also have to reprimand your child for doing the wrong action because you don’t want it to continue but your child really didn’t do much wrong on his/her own.

This led to another something that was said to me and that was, “You really don’t like correcting Makiko do you?” I replied, “No, I don’t like correcting Makiko, who likes correcting their baby?” to which this person said, “No, I get the feeling that you don’t like being the alpha in the relationship.” I somewhat agree and somewhat don’t. I don’t like correcting her, but I will. It sucks, but I will. She is part of me though and if someone offends me, I’ll most likely speak up so I really need to extend this to her.

I sent a message to my Guide Dog instructor last night simply saying, “The public is obnoxious. They really have no hands-off concept.” She replied, “It would be interesting to do a study on which rude people will pet first – a pregnant woman’s belly or a guide dog?” Interesting idea, huh? She also told me that one of the individuals she trained would end situations/”conversations” by saying, “Sorry, I’m running late for an appointment with the restroom,” and that would suddenly make people move out of the way. I found this hilarious and I really bet it IS effective but I don’t know if I could ever put that to use, haha.

These are situations that have all happened in the past week and you’re going to think I’m joking on some of these because they are just THAT obnoxious but I’m dead serious.

  1. An individual prances around in front of my dog because she is scared. She is doing like the scared jump prance but just kind of does it RIGHT in front of us. She doesn’t move AWAY from us, she just shrieks and jumps. And she wasn’t faking it to be obnoxious. Not entirely sure I understand this reaction.
  2. A little kid is walking by us with her Mom and she just swipes her hand all the way down Makiko. Now I understand that this little girl is too young to understand and her Mom DID correct her, so while it was frustrating I understood and didn’t get upset about this one.
  3. A Mom goes “Look there’s a cute little doggie. Why don’t you go pet her?” And then encourages the daughter over and over again to come pet Makiko until she does. I didn’t hear this but another person informed me of this after. Um, this just blows my mind. The daughter obviously doesn’t want to pet the dog, she doesn’t even know she’s not SUPPOSED to, yet the Mom who SHOULD know is encouraging her dog to? Oi.
  4. Makiko and I are at a halt and Makiko makes contact with the person whether that be by eye or touch and the person “pets with their mouth,” by saying in a high pitched tone “No, I’m not gonna pet you.. No, I’m not.. No, I’m not sweetie pie..” or some variation of that. This has happened multiple times.
  5. When I get locked out, someone comes to let us into the apartment, I can’t see a thing because it’s night time and I didn’t honestly even know the person was there until I feel Makiko doing something weird. Oh, hello there, sir. Now I don’t know if he knows I am blind so this is one of those situations where I should have stood up and spoken up more but stillll dude.. her “Guide dogs for the Blind” thing IS reflected and you ARE sighted.

I’m working on getting a sign. I have a different harness than the standard GDB harness so I have to contact the company to make sure it will fit. The actual sign isn’t that expensive it’s the sleeve that fits the harness that is the expensive part and really that’s been my hesitation about getting it, is the price. But now it’s come to putting a price on my sanity and safety, and there is no price label for that so I’m going to get one if it will work.

And this even carries over to letting your dog “mount” my dog, tackle my dog, play with my dog, run in front of my dog, try to tease my dog, etc. YOUR dog is under YOUR ownership and if YOU think it’s amusing or if YOU don’t control YOUR dog, then YOU are offending ME and I will do what I need to do, within reasonable limits and the law, to defend MY dog who is actually PART of me and MY eyes. People just don’t seem to get the picture. I took a night walk around my complex with Makiko tonight. I don’t normally do that but I felt like it tonight. She was in harness of course because I couldn’t see anything, at all. Suddenly Makiko is acting strange and I know it’s either a dog or a person. It’s a dog. Gosh darn it! And this dog is practically bouncing in front of Makiko, licking Makiko, etc. We can’t continue on. I hear people nearby at the basketball court and I yell, “Can you please get your dog?” Nobody responds, dog’s still there. Okay I really think they didn’t hear me this time so I yell again, “Um, Hello? I’m blind and this dog is interfering with us.” No response. “Can you PLEASE get your dog? My guide dog really needs to get back to work.” And then they start calling their dog. I don’t think they were doing this on purpose and I think they did take me seriously but their dog was still off leash and still an nuisance and Makiko and I are trying hard to correct our behaviors with dogs and other people but it’s really hard to do in situations like that. I corrected her, corrected the people, but my power over the other dogs is virtually nonexistent.

One person recommended I use the Gentle Leader. I have thought about that. The public often thinks it’s a muzzle but it’s not. They can still eat, drink, bark (although guide dogs don’t bark) with it on. It’s just a better way to control their heads and especially for a person with a visual impairment, it is a great way to feel the direction their head is going so you can catch the occasional sniff or you can catch if their head is going towards someone that is going to pet her, etc. I may do this but I have mixed feelings. I think it would be beneficial in that I could control her head a little more and have more knowledge of where her head is going. But then that brings up another underlying issue and that is I am a perfectionist and I am self-conscious and I hate to admit when there is a problem. Makiko is an amazing dog and she is one of the best dogs you will ever meet and I don’t want to tarnish that opinion in other people’s minds by putting on a Gentle Leader. Part of me thinks that’s admitting that we aren’t doing something right, and that’s partially true. Makiko shouldn’t be doing that and I should be speaking up more. But if the public just kept their hands (and dogs) off we wouldn’t have this problem to begin with. I’m still thinking about this one though. I guess we’ll see how tomorrow goes. We’ll be out in public a lot. It’s just with the occasional person though that she goes up to them, but its with what seems near every stranger that comes up to her so that makes it a bit harder to gauge.

Another person even recommended getting a taser for the times when a specific dog or two constantly comes at us. I don’t think I could ever taser a dog (or a person) though. Another person has said if I’m feeling brave I can just start petting the person. I mean after all they are petting an extension of me right? Again, not brave enough to do this one. I’ve also been told that I should really get mad at the people because that will make them take us more seriously. I could do this more easily than the other two suggestions but then the fear of me being a small female and them being larger males comes into play and jeopardizing my safety that way, etc. I’ve been told a way someone handles this situation is “I know my dog is irresistible but you really need to try, thanks!” I’ve also been told that when they say, “I know I’m not supposed to touch the dog but he’s just so cute. I’m really trying though,” you can reply, “Great, thanks, try harder.” Snarky, but probably conveys the point. I could probably do the irresistible comment, maybe the snarky comment depending on who it is. For the situations that happen around the complex, it was suggested that I contact my apartment complex office and ask them to include it in the newsletter or put it up in every building and the office door. I have thought about this but I have already gone to them about one situation awhile back with the aggressive German Shepherd and I really don’t want to put a bad taste in their mouths about me as a guide dog handler so I’m holding off on this one for now. I don’t want to be a nuisance.  I’ve posted this situation in a guide dog forum and have gotten a lot of feedback (aka all the above). I knew this and I’ve experienced it before but not in a long while. (I say that like I’ve had Makiko for a long time but I really haven’t.) Some people will think even though they know they can’t pet the dog, because we can’t see, they can pet the dog without us knowing. Except that’s not the case many times. We are very in-tune with our dog and their movements and behaviors that we can many times detect when something is up. With me being partially sighted, I can many times see them but sometimes if they land in just the right spot I can’t but I do often know something’s up by the way Makiko is acting. Some guide dog users have funny stories about different ways they have shocked the public when they tried to do this. Again, not yet brave enough I don’t think but I’m not really sure on that one.

I mean think about this, we all know that with children or animals, you have to embed in them what is right and what is wrong from the very beginning. If Makiko thinks that getting distracted and not paying attention to what is around us with her full attention and instead paying partial attention to me and partial attention to whomever or whatever has decided to be a royal pain, when she grows older this will still be the case. We could be crossing a street.. BAM there’s another dog, and we’re stopped and we get hit. I mean, this is not an extreme case. This very well could happen. However, I will say that so far Makiko’s distractions have never put us in jeopardy. They have always been when we were in a safe area or stopped/halted. It is STILL not okay, but Makiko has always put our safety first and I have honestly not been this safe in years.

I saw a quote online tonight that said, “One person’s dog is another person’s perspective.” This was used by a puppy raiser on Tumblr who was talking about the sacrifice it takes for them and how hard it is for them to give the dog up at the end of their one year commitment but that dog WILL likely go on to be so much more and will be that person’s perspective who has a visual impairment.

Just a fair warning, this post may be edited over the next day or so. I won’t be taking anything away, just adding things that I’ve heard from others and that I feel relevant to this rant. All of the things that I wrote above were my perspectives as well as other guide dog users perspectives on what it is like to distract a guide dog, and many times you may not realize you’re doing it. One of my friends said during the first day of class, “You’re basically supposed to pretend they are not there,” and for most purposes that would be really cool if people did. I’m not really talking about my classmates. I mean one here or there will do something but its mostly others. Thank goodness that I’m in the Rehabilitation profession and don’t have to deal with that much in class. I’m sorry if I pushed the point too far into the ground but it all needed to be said and all the ways others phrased it to me I felt needed to be mentioned.

So here’s my challenge to my friends and family. If you are with me and you see someone petting Makiko with their hands or their mouth, I should tell EACH and every one of them that it’s not okay. I need to keep reinforcing it regardless of whether it is a stranger, a professor, a friend, or a family member. Cough, remind me, do something to give me the hint, please, that I’m not doing what I know I need to do. “Sorry I’m not sorry” if I offend you or if I come across as being one of those nasty words. You all KNOW how much I did not like using a cane (most of you do at least), you all know how much freedom I have with Makiko know and you know how important both Makiko and maintaining a busy lifestyle is for me. So much of that will be taken from me if I can’t trust her because she does these things. I won’t be mean when I tell others about the rules, I really won’t, but I will stand up for what is best for my guide dog and me as a working team and if you take offense to that because I’m getting stricter and confronting you.. “I’m sorry I’m not sorry.” 🙂 “Time to be a tiger” as one friend recently told me.

Sincerely,
Jess and Makiko, a very hard working girl who is confused by the obnoxious public

P.S. Since posting this, I have received a little more insight into Makiko’s childhood and she did this then too. So it’s in her nature and I just need to kind of find a compromise. Makiko is a very social dog and does love people WAY more than dogs and I love this about her, we just gotta figure this out while working. Her puppy raiser also told me she calls the Gentle Leader an “intelligence collar” because often the dog goes back to their puppy raising days when they had to wear them all the time and of course be on their best behavior so sometimes they revert back to that super good behavior. I’m still thinking about when I’m going to use it though. I also want others to know that I wrote this when I was tired and therefore a little bit more emotional. I am really not that hard on Makiko about this issue at all. I probably should be a little more firm and that’s what I’m working on as described above. I am hard on myself but I’m working on this too and that’s mostly because I don’t want a bad habit to develop that will really affect us in the future and when I’m trying to talk to someone it’s hard because I can’t see to determine if she’s soliciting attention and that is drawing somebody to us or if that stranger is just being obnoxious. Most of the time it’s the latter but I still need to redevelop things so that I know most of the time it’s not Makiko’s fault at all, ya know? Last, I will be hard on the public, I really don’t care about that. Or I’m trying not to. 🙂

My Cane is Classy


…. Or so says the best friend! As I have been getting used to my cane more and have realized its many benefits, so have my friends. Greg came to visit me while I was in Houston for that appointment I mentioned in a previous blog. I had been using my cane because new town, not traveling with someone I know super well, etc. It helped me a lot. When Greg came to pick me up, I explained to him that I was using a cane now and he made me so at ease. He made a few really cute adorable jokes and called It “classy” in his very enthusiastic way. This made me so happy, you wouldn’t even know. It’s the little things that count, right? 🙂

Just had to share this story with you all. I have such amazing support, I am truly blessed.

Jess

Ambutech


Ambutech makes some very nice canes. They are sturdy, reliable, relatively attractive, collapsible, etc. I like their product ALOT.

I do not, however, like their Customer Service team. Several months back, I noticed I was having an extreme amount of difficulty with my vision. I hadn’t used a cane in a year or so, aside from the occasional night. I decided I needed to order a cane. First of all, their site is difficult. Second of all, the Customer Service acts like they are shipping us a toy and it’s not of any importance to us. They took almost a month to get me my cane. A MONTH! That’s kind of like one of my friends’ issues with her wheelchair company. She CAN walk but not very long nor far. The company took FOREVER for her to get her chair back to her, and it was a $48,000 chair. My cane was only $35 or so.. but it’s still like.. really… really?! It’s not like we need it or anything. Sheesh.

I’m hoping this cane, and my backup/old cane, last for most of my life because I really don’t want to deal with them again.. but because the product is so good I just may have to.

Frustrating.

Cane on the Cruise: Step 1


I had to think long and hard about whether I wanted to bring my cane on the cruise. On one hand, I just wanted to have fun and not worry about all the looks or questions that I would get with my cane. But on the other hand, the cruise boat has a LOT of people on it and a lot of things that I could bump into or trip over. I am getting really anxious nowadays when I don’t have my cane because it is kind of like my right hand and I don’t have to worry as much about what I’m seeing or not seeing. So, ultimately, I decided to bring it.

Great decision!

First of all, getting onto the boat was as simple as ever. I got to surpass all the lines and therefore didn’t have to deal with people and suitcases everywhere. We got on the ship in time to go up to our room, put all of our stuff down, and look around before the boat left shore. It was really great getting on and off the boat, and then getting around because I just didn’t have to deal with all the people. They moved out of the way and were generally respectful. There was this one little kid, after we just came down from mini-golfing, that was like “MAMA! That’s an AWESOME golf club.. what kind of golf club is THAT?!” I could tell the Mom was kind of embarrassed and didn’t want to be rude so I told him that it was a cane to help me get around because I can’t see real well. He replied, “My mommy can’t really see well either!” She had glasses on. it was pretty cute!! 🙂

Getting around in crowded areas was great. I didn’t really bring it offshore because I was nervous that I would be a target, but on the boat it was super helpful. I think I’m starting to really see the benefits and not worry so much about the drags of using a cane.

My Psychosocial Battle with the Cane


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! 🙂

-Jess

To Cane Or Not To Cane– That is the question


Hello to all my new readers! I’m so excited to have new readers and get more feedback from other individuals with RP or who have some connection to RP. I noticed on my last post there was a lot of feedback about using a cane. I said I was going to write another post.. so here it is! 🙂

A few years ago, I started my Orientation and Mobility training. I didn’t know that i would need my cane for years and years, however now I’m realizing that wasn’t the case. I didn’t have the chance to complete my training because at that point I was going to school out of state and did my training on holidays. I learned how to cross intersections, travel down streets, navigate through a busy mall to find a certain store, etc. I did this all with a blindfold on and my cane.

At my previous school, I was pretty good because I had my best friends there (and my then-boyfriend). They were so willing to help me get from place to place at night, however now that I’m at a new school it’s a little bit more difficult. They also don’t have a good night escort program here, whereas they did at my previous school.

In the past, I would carry my cane when I traveled on an airplane, or when I went to places where I thought I would probably have issues. Now, I really want to have it in my backpack more so that I can use it on the really sunny days or whenever I’m having trouble with the lighting situation, outside or inside. I am traveling from school building to dorm or another school building a lot at night. I’m having all sorts of issues with that, as detailed in other blogs.

I frequently have incidents where I do a near-flip over a cement bench, trip over a curb, and so forth. I think, and so I’ve heard, that if I start gradually with my cane and work with it more and more, I’ll learn how much it really does help me. I imagine I’ll start using it more and more.

Since I have moved a lot within the past 1.5 years and I haven’t used my cane hardly at all, I have somehow managed to misplace my cane so now that I really do want to use it, I can’t right away. It was free through my state rehabilitation agency but now that I lost mine, I had to pay for another. It was 36 dollars, including shipping, from Ambutech which really isn’t that bad. The drawback is that it has taken almost 2 weeks to get here and still hasn’t arrived. It’s not like we need our assistive devices or anything, right? 🙂

I’m not sure how my parents feel about me using my cane more. My father asked via text one day, “Are you sure you really need this?” After I explained why and asked him if that was okay (just to be courteous, since he was paying), he replied, “Sure, just curious.” But I’m pretty confident in that he doesn’t think I really need it.

My mother, on the other hand, understands more. I tend to vent to her when I injure myself and she knows more of what I go through. She recently offered to pay someone to help me get back from an organization meeting to my dorm on campus on Monday nights. I told her I appreciated it but I wanted to hold off on that for awhile. I think I’ll be a little more able and happy to do it independently.. meaning walk to the bus and get situated, then get off.. once I get my cane.

I will receive more Orientation and Mobility training soon. My instructor is going to give me a recap lesson over Spring Break and then we’ll continue our real intense sessions over the summer when we have more time. I think this will be good.

The biggest situation in which I really want to learn how to use a cane is getting on/off buses and finding a seat. This is where I meet the most negative/rude people and have the biggest difficulty. I’ve been thinking about that a lot lately. Those of you who do use canes, or even really a guide dog, how do you find an empty seat on the bus?

Hope to get more feedback and hear from you soon!

Jess