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Full History - 2018 - 07 - 13 - ID#8yjwgh
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What to expect after using a cane (21,RP) (self.Blind)
submitted by Dycruxide
Currently I am 21 and was diagnosed with RP when I 5. Slowly my vision has been slipping away. My grandfather and great grandfather have/had RP and one went blind around 18-20, the other around 30

I'm on the brink of using a cane; Ive been putting it off for a couple of years always saying "soon, I can get by for now, next year I'll start" (the usual).

Now I feel I need it. I'm currently a university student and do embedded system programming and hardware/software interfacing for work. I fear how my life is going to change once I start using a cane and have been asking myself a lot of questions:

Will people at uni treat me much different? are people going to avoid me for lab group tasks as I'm perceived as a liability? will I lose my job or be overlooked for promotion because my boss might think I'll become useless soon? Can I still go to the gym or will I be denied? -and if not, will I still be judged by people? Are my friends going to invite me to less events? because I may be perceived as a burden that kills the carefree and independent lifestyle of these kinds of events. Can I even perform my current job without vision effectively even if I got used to it?

All these things are just a few of the reasons a VI person can push back the need for aids for "just a little longer", because once I start using a cane I feel like my life will drastically change for the worse from one day to another, even though my vision would still be roughly the same.

What are other people's experiences losing vision and switching to an aid once already integrated into social and work environments?
I need to do this sometime but feel theres no going back, if I start using it and stop again I'll be labelled a fraud because "I didn't really need it"
gracefulltree 12 points 5y ago
Every single blind or visually impaired person I’ve ever met felt the need to wait or procrastinate!

You’re in the process of falling head-first into a stigmatized group, and the cane is a symbol of that group. It’s a really hard decision!

Try to keep positive as much as you can. There are a lot of us willing to answer questions having gone through it ourselves.
AllHarlowsEve 11 points 5y ago
Here's the thing about canes, they're obvious. Not only are they tall and, generally, bright white, but they're also reflective and recognizable.

Unfortunately, far too many people view blind as a binary, something you are or aren't, without taking in the nuance of people with some vision, lots of vision, little vision, night blindness, etc.

I know at least 4 people who have broken a bone or otherwise somewhat seriously injured themselves because they felt that they didn't need a cane, they could see enough,or they knew the area good enough, or they were out with friends who would help, or some other excuse.

One person fell because they didn't check the side of the ramp and broke their ankle, another broke their collarbone tripping off the edge of the curb, and plenty of bruises, rolled ankles, hurt elbows, and road rash all around.

I won't tell you with any absolutes how people will react, because nobody can. Will some people become raging dicks and presume you're incompetent? Almost definitely. Will people look at you different? Sure. Will employers look at you different? Possibly.

Does that outweigh your safety and in-dependance? Nope.
gracefulltree 6 points 5y ago
I’ve been in that same place. Several times! The fear and anxiety and questions are the same each time.

I was declared legally blind in my mid-20’s, used a cane for a little while because I thought it was what I was supposed to do, but then I put it away because I “didn’t need it.” That was fine, until my vision started getting worse again, so I pulled it out & started using it. It’s been necessary for a while now, and even though I know I need it and feel safer when I do, I still question.

There are people out there who will be jerks because of your vision loss, as indicated by your cane. There will be a lot of people who don’t care. There will be people who want to help you. Sure, there might be times that you don’t get invited or don’t get the promotion because people think being blind means you’re not fun or can’t do things, but there’s going to be times when you prove them all wrong.

Technology has come a long way, and adaptive software is much more common, so you shouldn’t have trouble doing your job/classes. It takes a bit of adjustment, but so does any new task.

And, really, do you want friends who won’t include you because of your cane? They sound ignorant and like not good friends.

I’m 40 now, have been legally blind for over 15 years, have gone through several experiences of vision loss. I have a full-time job, a house, a family, and a bunch of friends, sighted and not. You’ll do fine!

(On an aside, finding a counselor to talk to about these fears might help. It helped me!)
Dycruxide [OP] 4 points 5y ago
Thanks heaps for your response. "There's going to be times when you prove them all wrong" was pretty empowering. If I try hard in what I do and aim to be enjoyable with my friends then that's all I can do really, and I'll see what comes of it.

I had a counselor very briefly back when I was 16, I wasn't a huge fan, I felt he what he was saying was fairly generic -typical self help nonsense that I don't really buy into. Perhaps I need to find a VI person who understands a bit more.

Thanks! I'm pretty torn right now, it's such a life changing decision in my view and I feel the urge to procrastinate it but I think I just need to lock in a date and just start
TheBlindBookLover 2 points 5y ago
Hi. Depending on where you live, there are often blindness organizations that have counselors, therapists, and clinical social workers who can provide you with counseling. I would also suggest asking your ophthalmologist for a referral to a mental health professional who has worked with people who have an understanding of blindness and the tremendous potential that all blind people have if they undergo the proper training. You should also look into getting independence training in general. Often learning blindness independence skills are what will Reduce a portion of the anxiety of using such tools. I hope that this helps.
spifflett 5 points 5y ago
Chiming in to recommend that you start learning to use accessibility software now, whether that is for magnification purposes or screen readers or whatever.
[deleted] 5 points 5y ago
When you start using a white cane, the majority of people are going to assume you have total (no light perception) blindness. This can be a blessing and annoyance. You will be more visible crossing streets and people are more prone to offering an assist. This can be frustrating as well, because sometimes you just want to do something independently but get interrupted by well meaning people wanting to ‘help out’.

I would recommend getting a lightweight folding cane to start out, you can keep it on you at all times and use it instantly. I use a constant contact tip but the NFB has a $1 that is rigid and lightweight. I recommend spending a few hours with an orientation and mobility teacher to learn proper techniques and get the most out of using a cane. Proper techniques will keep you safe, prevent fatigue, and you won’t have to unlearn bad habits when you find yourself relying on it more as your vision lessens.
Dominicus7 4 points 5y ago
People will treat you differently with a cane. That's a fact. But would you rather them treat you differently because you are learning to become more self reliant or because you are stumbling around with no further explanation.

The fact is your sight is deteriorating and no amount of putting off the help you may need will stop it.

You don't need to be fully blind in order to use a cane, most arent. If it's helpful then you should do it. Having it won't prevent you from doing certain activities. I personally am considering using one at night when it's too dark for me to see.

Just do whatever you think best but don't be swayed by what others will think of you.
Terry_Pie 3 points 5y ago
I have RP. I used an identification cane a bit in uni, got my first full length cane when I started working (at age 25). I began by only using it at night, but I started using my cane all the time at the start of last year (I made the commitment at the end of 2016 that I'd start using it all the time). You don't look back, trust me.

I know a couple other guys who've had the same experience. You are so proud of being independent that you don't want to use a cane. I know guys still like that. When you finally get over it though and start using one, it's much better. People get out your way. People offer you help (even if you don't need it, you just decline and it's nice to know they care). People understand if you're looking around blankly. And it's always their fault if you bump into someone or something.

Work and study? I dunno, it rarely comes up. And believe me, if ever it did come up in a negative way, I would hammer that person. Full weight of work's policies, or the law. It gives you real power. If you don't disclose your disability, if you don't make it clear, they can always get you because of it - because they can always say they didn't know. You make it clear, you make that statement, and they have to accommodate, they cannot discriminate (I'm assuming you're in a western country). And if they don't, they know you'll hammer them for it.

Just do it man, it's not about what people think of you, it's about what you need, what's the safe and responsible choice. You don't use a cane when you do need it and you could end up in some real trouble.
Dycruxide [OP] 1 points 5y ago
Honestly cheers. I think the pride thing is very true. Thinking I'm strong and independent for not using it when real strength would be not feeling scared to use it and being able to navigate myself. And it would be nice to bump into people accidentally without needing to explain or come across as rude aswell, actually looking forward to that part
Terry_Pie 2 points 5y ago
Your mates will love you too because you'll be able to easily clear a way to the bar ;)

Null sweat mate, I've been there so I know it's not easy. It's like learning to ask for help. You fight it, and it's a difficult skill to learn (and I don't think I have it down pat yet), but when you do it'll make things a lot easier.
clevername-here 3 points 5y ago
Humor is your best friend. I absolutely dreaded getting my cane, and I still don’t use it as often as I should. But once I got it, I learned to have a lot of humor about it when people asked. People ask me what it’s like, and my response is “Well, if people are rude, I can hit them with it!” and stuff like that! You also have to think: odds are, when you’re in public, you’ll never see the same people again, for the most part. I will admit, school is trickier, but again, my fellow college students all got used to it and were kind and helpful, and a sense of humor truly helped break the ice. Don’t be afraid to poke fun at the funny or darkly funny parts of being VI.

Please PM me if you need anything, I feel your post so much and I’d love to help in any way I can.
Dycruxide [OP] 2 points 5y ago
Thank you! I'll keep your pm in mind. If I'm confident and humourous even if I lose some people I'll gain more suited ones.
clevername-here 2 points 5y ago
That’s the right mindset!! ❤️
FrankenGretchen 3 points 5y ago
If you feel safer with your cane,use it. If you're our and shout with your cane you're already defying the stereotype that blind folks stay in because they have no jobs or family or social lives. The sooner you're comfortable with your cane, the better. Further vision loss will have less impact.

On the job part, I grew up with tech minded blind folks who did exactly what you're doing as a career path. We're in our late 40's to early 60's, now. Tech was primitive and assistive tech was infantile. In the early 80's, one friend told a story about needing a hardware upgrade assist and having a colleague come over to his house to help out. Helper was shocked to discover that my friend's system had no monitor. Why should it?

Take a deep breath and consider that what you're doing is a lot easier to adapt than many other careers. You still have time to experiment and find the right tech fits for your needs. Even if you wait, the solutions are out there and more are coming out. The advantage to starting now is that any issues you discover can be worked on before you absolutely need them to work.

Consider that your expertise base might put you in a place that would be beneficial to many other users without your skills or even colleagues who unexpectedly find themselves in your shoes. We never know how much we help others just by solving our own problems.

On the social thing. I was a lot less secure when I was younger. I used to get really scared in large groups or loud places. I waa clingy with friends and it made us all uncomfortable.

I've worked on those issues and found solutions but found its more stereotype than just my personal situation that caused problems. So, I've given up trying to reassure others that I can keep up. I make sure I have supports in place so a concert or street fair is possible whether my friends want to go or not or if I get separated from them, for example.

Friendship shouldn't have to include resumes. Few of my friends know how to use a cane or arrange my art supplies or how to assess a medical crisis all of which are essential skills I have which I've adapted to suit my vision limits. Focus on commonalities and when accessibility issues come up, handle them with dignity and honesty. Some people handle this better than others. You will find true friends you never imagined and maybe lose someone you thought would be a bff. Welcome people into your life who don't try to kill you (out of carelessness or intentionally) and offer them the same thoughtfulness in return. The rest will work out.

This is definitely not the end of your life. Just a change in how you live it.

Edit: autocorrect caught in the act
Dycruxide [OP] 1 points 5y ago
Thank you so much, your words actually mean a lot to me and I really appreciate it.
TheyAreCalling 3 points 5y ago
Sorry if this is posted all the time. You should watch Molly Burke's Youtube videos if you haven't. She is very popular on Youtube and has RP.

$1
ENTJ351 1 points 4y ago
I think they would know regardless if you use a cane or not. I would use it if they judge you or not. I think part of losing your vision will show whether you choose to adapt or not. So, a cane really doesn’t make that much of a difference and at least you’ll have a reason for your inability and also a goal to work towards so you can adapt.
silverclaud22 1 points 5y ago
Everyone has given you excellent advice. I have RP as well and started using a cane a couple years ago when I went back to university. Like you I put it off as long as I could. At first it was awkward and weird, but that was more because I was awkward and weird about it. As I got more comfortable with it and just accepted it, it got a lot better. Humor is definitely your friend. It has been a great tool that I use all the time now. It breaks the ice and makes everyone more comfortable. I think it is all about how you present yourself.

The other person on here that said you can clear the path to the bar is sooooo right. Everyone gets out of my way haha. I’ve even gotten us better seats at shows because of it! That’s definitely a plus.

And like you said no more awkward explanations about why you bumped into someone or knocked something down. No one is going to cus out the guy with the white cane for knocking down a display lol More likely than not they’ll apologize to you for placing that darn display in the wrong place.

Some people will still be weird about it, but that’s them and not you. There are definitely a couple people that stopped hanging out with me because I started using my cane. That was rough, but I realized that I’d rather surround myself with cool, strong, people that accept me than with people that are so concerned with conforming they would rather lose an awesome friend like me. The sheep can stay with the flock and miss out on upgraded seating and cleared paths to the bar and my winning personality. Lol. It is an excellent way to weed out your true friends.

It’s all you and how you decide to roll with it. I’m sure you will do what’s right for you. Open offer to chat anytime. I’m a good listener and I get where you’re coming from for sure.
Dycruxide [OP] 2 points 5y ago
Thanks, and appreciate the effort. This post has probably been the best thing I've ever done for my vision because there's so many awesome people in the community with lots of ideas, experience and support.

Cheers mate, Im actually a small bit keen to start using it now
silverclaud22 1 points 5y ago
Cheers! I think you are right. I wish I had found this community 2 years ago. I wish you all the best!
[deleted] 1 points 5y ago
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