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Blind and Visually Impaired Community

Full History - 2016 - 09 - 10 - ID#522v3s
5
24 yo with ushers syndrome (self.Blind)
submitted by zoanthropykitty
Hi everyone, I am a 24 yo female with ushers syndrome type 2. My vision deteriorated quickly recently and am now left with approximately 10% in each eye. I'm finding social isolation and a lack of understanding in the community to be one of my biggest hurdles, even within the blind/vision impaired community due to the added severe hearing loss. Would love to hear how other people have coped and what has helped you most??
charliemyheart 3 points 6y ago
My suggestion as a person with hearing loss, and who is blind (my vision in the field sense is similar to yours, but my central is 20/400). Braille is and will be your saving grace. Learn it and learn it well.
Get comfortable with traveling, find someone who is willing to teach you not just routes, but how to travel without routes (NFB centers are great at this, but if you aren't the US, find someone who teaches in their style, it has given me freedom that nothing else can).
Talk to others like yourself either online or in person.
Get training, now while you still have some vision, try to find teachers who are blind, sorry @KillerLag in many ways sighted trainers will never understand what it is like to be blind.
zoanthropykitty [OP] 2 points 6y ago
Thank you for the advice! I have been looking into braille classes and have managed to find some that assist deaf-blind people
How did people teach you to travel without routes? I'm using a new o&m provider now since the others were so bad at considering hearing loss as well, so I will ask her about it when I meet this week
charliemyheart 1 points 6y ago
Most will not be able to do this or feel comfortable with it, your best option is to simply ask them.
-shacklebolt- 2 points 6y ago
All of this is solid advice, especially regarding learning braille. Anyone anywhere on the deaf-blindness spectrum who is able is almost certain to have their life greatly enriched by becoming a competent braille reader.
YKguy 1 points 6y ago
I'm late to this. But I am m/43 with Usher type 2. I still have my central vision and I am still able to work. If I made it this far I could prob work to at least early retirement. Usher sucks. But the one true gift it gave me once I was diagnosed is to take in all that's around you. Enjoy the sunset. Enjoy the sunrise. Listen to the birds. Or even northern lights. Because I can assure you people with normal vision and hearing probably never really been one with the universe and probably regret it on their deathbed.

This is a little deep but hey the universe is amazing
Silverottawa 1 points 6y ago
US or Canada?
zoanthropykitty [OP] 1 points 6y ago
Australia
-shacklebolt- 1 points 6y ago
Some general questions:

- How are you getting along right now? Are you getting along alright at school and home? How do you usually communicate? How do you read? Do you travel alone, go grocery shopping, etc? What are you struggling with? I'm asking to get a better idea of where you're at in terms of adjusting to your recent vision loss.

- What are your hobbies and interests?

Some thoughts:

- Looking at your post history, you talk about how your O&M instructors "teach you routes you have to take" and that you feel very uncomfortable in unfamiliar environments. Are you also being taught how to plan trips, orient yourself, gather information, and make corrections when traveling to new places? Do you have a smartphone with GPS that can help you? Are you able to effectively use it with speech, large print, or a braille display? Are you able to ordinarily communicate with people you encounter on the street for directions using speech, a communication device, or a print-braille communication card? Can you work with another O&M instructor if you're not getting all the tools you need or aren't being encouraged with the mindset that with the right skills and training you can live and travel independently?

- Do you sign? If not, there's [groups]
(http://www.ableaustralia.org.au/what-we-do/deafblind-services) that can help you learn Auslan as a deafblind person. Depending on your vision, you might be able to view it normally, view it closer than usual, use a hand to track the other signer, or use fully tactile (hand over hand) sign. I'm not going to lie, there's a pretty big bridge of misinformation to cross with the Deaf community and blindness, but it's only going to happen if people are out there and doing it. There are many Deafness-specific events that would be pretty accessible to you, such as Deaf coffee chats that tend to have a lot of one on one or small group conversations. Since you're a uni student, there might also be a Deaf or Auslan club at your uni with regular social events. Reach out to them and see how you feel about it, if it's not something you've already been involved with.

- Regarding blind people, the bridge of misinformation goes both ways unfortunately. A lot of blind people view the world as extremely dependent on auditory cues and struggle to relate to those who do not. But this is certainly not all blind people, and it can be overcome. Be assertive about what you need (such as interpreters at events) and be creative about how you accomplish tasks. Do you have an amplifier system that connects to your hearing aids you can use with events or one on one conversations where you give the mic to the speaker? If speech is still difficult, you can use your own phone or laptop (with speech and large print or a braille display) or a braille notetaker to allow a blind person to type to you (using the TTS) and you to be able to read it (using large print, or braille) and reply.

- Do you read braille? If you haven't, why not? Braille can open up a lot of opportunities not only for in-person communication, but online communication as well, and it'll work for you no matter what your vision or hearing is now and in the future. A braille display can be used for in person communication, for text relay phone calls or TTY calls, reading and writing, and accessing a great deal of the internet (including communities for just about any interest you might have.)

- Braille also makes a *lot* of games accessible, if you're interested. http://www.64ouncegames.com/ makes a lot of accessibility kits for a ton of different mainstream board and card games, and ships free worldwide. [There's also a braille-adapted scrabble board and tactile chess sets.]
(http://shop.rnib.org.uk/home-and-leisure/leisure/board-games-and-dice.html) There's probably many existing tabletop gaming groups in your area that you could join and bring your own games to, and I find that gaming can really break the ice because you all have something you're there to do together.

- Braille also makes books accessible, which can also be an ice-breaker for socialization through joining a book club if you like to read.

- There's an [annual deafblind camp]
(http://www.deafblind2016.com.au/deafblind-camp) in Australia you could use to meet (and make friends with) deafblind people throughout the country.

- The NFB here in the US has a deafblind mailing list. The [site]
(http://www.nfbnet.org/) is having issues for me, but you can subscribe also by email using the instructions [here]
(https://nfb.org/listserv) and the group name is "Nfb-db".

Alright, so that's probably way more than what you were looking for, but if you want to know more please do reply and we can chat about what you're interested in, what you'd like to do, and what you're struggling with and see if we can't find some solutions or resources together.
zoanthropykitty [OP] 1 points 6y ago
Thank you for the information! Had no idea about the camp, meeting other people with it would be great.
I went through a period of rapid deterioration in my sight in 2014-15, so I feel really new at all of this. I was only just actually confirmed as having ushers syndrome too.
I am managing okay now, I use adaptive technology on the computer for my uni work (I do most of it online), and I'm managing okay. I'm on the waiting list for a guide dog to help me be more independent.
The big issue I've been facing is that the organization I was with was training me to use my hearing to cross roads etc, which I just found really unsafe because I can only hear what is directly in front of me with my hearingaids. I also relied heavily on lip reading, which is obviously a big problem now.
I never learned sign language, I have moderate to severe nerve deafness so with hearing aids and other technology I was able to manage throughout school etc.
I'm definitely going to learn braille after all the suggestions on here! I love reading and that is not a hobby I want to lose.
I find some audio books are still alright for me but braille would give me a lot more freedom.
Thank you for all that information I really appreciate it! Will sign up for the mailing list too.
KillerLag 1 points 6y ago
Do you have any DeafBlind Services in your area that can assist as well?
zoanthropykitty [OP] 1 points 6y ago
Unfortunately not in my area, the closest services are about a 2.5 hour train ride away in the major city. The services here seem to be very specific with vision loss, however I've just switched to another provider and they seem a bit more knowledgeable about hearing loss
zoanthropykitty [OP] 1 points 6y ago
Unfortunately not in my area, the closest services are about a 2.5 hour train ride away in the major city. The services here seem to be very specific with vision loss, however I've just switched to another provider and they seem a bit more knowledgeable about hearing loss
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