Blind and Visually Impaired Community
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Ushers (self.Blind)
submitted by bluhend_
I suffer from progressive hearing and vision loss. I was diagnosed in 2017 with Usher Syndrome, a rare genetic disease that doesn’t have a cure. I currently wear hearing aids in both ears and eye glasses. I have recently decided to quit driving because I cannot see in the dark at all, I can’t even take walks or runs early in the mornings or late at night. My peripheral vision is minimizing to the point I now have tunnel vision and I am constantly running into people and things. My hearing loss has been something I’ve dealt with since I was born and I feel I do okay with my hearing how it is as long as I ha w my hearing aids. But I didn’t have any issues with my vision until I was about 12 years old and I am 29 years old now. I believed my eyes were just like others who wear glasses and didn’t know I was progressively losing my vision. I didn’t know other people with bad vision don’t struggle as much as I do. After being diagnosed, it all made so much sense. My retina specialist/doctor has been seeing me every year since 2017 and hasn’t noticed any changes but I believe it has definitely gotten worse, especially within the last 12 months. I wish I had more support, that’s all!
4humans 9 points 2y ago
Learning to use a long cane would give you the ability to go for walks anytime of day and help to avoid obstacles.
codeplaysleep 6 points 2y ago
I've definitely noticed changes in my vision over the years that isn't really measurable in an eye exam. It happens. Functional vision and how well you do on an isolated, controlled vision test aren't the same thing.
I agree with the suggestion of learning to use a white cane. You can contact your area's department for the blind or vocational rehab office about getting O&M training. It sounds like it would help you a lot.
I, too, have no peripheral vision, having limited central vision in only one eye, and the cane is really helpful in many situations.
I agree with the suggestion of learning to use a white cane. You can contact your area's department for the blind or vocational rehab office about getting O&M training. It sounds like it would help you a lot.
I, too, have no peripheral vision, having limited central vision in only one eye, and the cane is really helpful in many situations.
SixtyForceDemon 5 points 2y ago
It really do be like that sometimes. I have ushers and I was born completely deaf. I’m 20 and I don’t even have a drivers license. I can’t see in the dark at all nor can I see out of my periphery but I’m not going to let it dictate my life. Be proactive about your accessibility needs. Don’t be afraid to stand up for yourself when you need accommodations and help.
yourmommaisaunicorn 3 points 2y ago
Had to do a double take on the username to see if I wrote this post.
u/bluhend_ , I didn’t qualify for cane training by my state for the longest time until the vision test showed less than 30% night vision. I’m waiting to get hooked up with a counselor but at least I’m approved for services. Call your state board now to get the ball started.
u/bluhend_ , I didn’t qualify for cane training by my state for the longest time until the vision test showed less than 30% night vision. I’m waiting to get hooked up with a counselor but at least I’m approved for services. Call your state board now to get the ball started.
bluhend_ [OP] 1 points 2y ago
Thank you for the feedback. I hope the cane training makes a difference for you. Considering all the feedback on a long cane, counseling, and other assistance I am going to seek some resources now.
Would you mind telling if you’re still able to work or do anything of that nature? I am currently unemployed and fear that if I try to work again I will not be able to to excel the way I did before my vision worsened.
Would you mind telling if you’re still able to work or do anything of that nature? I am currently unemployed and fear that if I try to work again I will not be able to to excel the way I did before my vision worsened.
yourmommaisaunicorn 2 points 2y ago
I am able to work because all of my work is on a computer. Your state also will have employment resources. I’m hoping mine will help me get a better job as I’m finishing my masters degree and grossly overqualified for my current position.
bluhend_ [OP] 1 points 2y ago
I am definitely going to look into some resources, I do not want this to control my life. I am a healthcare clinician and it is my passion but I am afraid I cannot go back to a clinical setting for the safety of the patients. I have thought about going back to school to pursuit another career, but I also do not want to waste my time or money on school. Time is so precious and once it’s gone, it’s gone.
yourmommaisaunicorn 2 points 2y ago
You would be surprised what is available to you. For example for stethoscopes there are Bluetooth ones that visually show you the heart rate. Your state’s resource would know all the accommodations available to you.
HeftyCryptographer21 2 points 2y ago
I don’t have any advice for you, but I can definitely relate. I am still young(17m), but I was born hard of hearing, and am now totally Deaf. I was also born completely sighted, but my vision no has gotten a lot worse, about 20/400, and I am totally night blind, photophobic, etc. I don’t have any advice, but I am living a good life totally Deaf, and mostly blind so if you have any questions, maybe I can help answer them. Good luck!
bluhend_ [OP] 1 points 2y ago
Well thank you. You are so strong! 👏
HeftyCryptographer21 1 points 2y ago
Yeah, no problem.
intellectualnerd85 2 points 2y ago
Hi. I second the cane suggestion. Getting in touch with your local blind community and resources could also help. I have RP
bluhend_ [OP] 1 points 2y ago
Are you still able to work?
intellectualnerd85 2 points 2y ago
I personally never worked and have some sight. You can get training through DOR to learn how to use technology and have job skills. That is what I am doing.
bluhend_ [OP] 2 points 2y ago
Thank you for the feedback, that really gives me hope.
intellectualnerd85 3 points 2y ago
Cling to hope because here is the cold truth. We are capable, intelligent beings who can do virtually anything a sighted person can. We might have to fight harder than people with sight but that can make us that much stronger
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