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Blind and Visually Impaired Community

Full History - 2020 - 09 - 19 - ID#iw1ifx
16
How can I stay motivated to live without a support group? (self.Blind)
submitted by miragerain
I tried to find local support groups but none are accessible to me with my disabilities. I tried going to a blind group but couldn't hear and tried going to a deaf group but couldn't see.

I tried asking a Helen Keller center counselor about a local group for me but she couldn't find one either.

How can I stay motivated to live when I'm cut off from the world because of my disabilities? I can't make friends because of my disabilities or work because of my disabilities. My disabilities totally ruined my life.
CloudyBeep 9 points 2y ago
Your disabilities do not define you, so you should try to find support from people who have other things in common with you. Last time we talked, you said that you would try to find jobs that involve writing. Tell us about what has happened since. There are many subreddits for writers which you could join if you want a community of support that provide you with constructive feedback.

Last time we talked, I suggested that getting training from voc rehab wouldn't be a bad idea. Have you followed this up?


Last time we talked, you said that you would read and possibly participate in some of the NFB email lists. Which ones have you been reading and participating in? Have you been inspired to join your local chapter of the NFB yet?

Since you're not holding yourself accountable for the steps you need to take to improve your life, you have unfortunately put us in that position.

Link to previous thread: https://reddit.com/r/Blind/comments/htp5uq/i_still_dont_know_what_i_want_or_can_do_in_life/
miragerain [OP] 3 points 2y ago
I don't know what I should say or do to make sure going to Voc Rehab would work out this time. I've tried twice before. It didn't work out because there were no jobs suited for people with both vision and hearing loss. One of the counselors said as much. They tried assigning me to a place where they usually send deaf people, but my vision was too much of an obstacle. They ran out of ideas after that.

I tried posting to one of the DeafBlind NFB lists but never got permission by moderators for the post to go through.

I tried joining a blind support group but couldn't hear. They couldn't afford accommodations for me.

I don't know what to write about. All I have to draw on is my experience being miserable from being disabled. That's my entire identity. I don't know how to expand beyond that.
CloudyBeep 2 points 2y ago
It is the job of voc rehab to find you a job. As far as I understand, they can't close your file until you're hired somewhere. Perhaps someone from the US can chime in.

I told you to write to the moderators. Did they reply to you? If your post was as negative as this one, it's not surprising that it didn't go through. But hopefully you've still been reading the posts, even though you haven't been able to participate.


If you don't know what to write about, maybe writing isn't for you. Voc rehab should be able to work out what you're good at and help you to receive training for a job that would allow you to use your skills.

You seem to be caught in a depressed, self-pitying loop. I'm not sure what you expect us to do for you beyond the many suggestions we and the community at r/deaf have given you.
miragerain [OP] 3 points 2y ago
My message was "How can I choose a career path?"
CloudyBeep 1 points 2y ago
OK. But the answer is to have marketable skills.
BlueZone123 7 points 2y ago
I checked your Reddit posts and they are all about trying to make friends and about trying to deal with your disabilities. You mentioned that you best communicate with people on-line, but that does not appear to be the casein Reddit. I recommend you start checking out different sub-reddit groups. You'll find all kind of interest groups, and have conversations with people. Don't tell them of your disabilities, as those would get in the way of the conversation. For instance, if you are having a conversation about your favorite TV show, and then you mentioned you are deafblind... The conversation will fall apart, as the other people will just start asking you questions about your disability and how you access Reddit if you cannot see or hear.
MostlyBlindGamer 3 points 2y ago
You don't even have to "hide" anything.

I'm rocking this very revealing username and still have plenty of interesting conversations on Reddit. It's all about finding things you're interested in and focusing on that.
just--questions 7 points 2y ago
Inaccessibility in disability groups is the absolute worst. I’m so sorry you haven’t found your people yet. I wish I knew of an answer but I don’t. But if there’s anything else I can do to support you, like if you just want to vent to someone or chat, reach out! I’m not blind or deaf but I have other disabilities (including some vision challenges and auditory processing issues).
miragerain [OP] 2 points 2y ago
Thanks.
DogsSureAreSwell 5 points 2y ago
A couple questions; this is just me thinking out loud, so take all these as speculation.

Could you think tactically about the different kinds of community you would find helpful or encouraging?

For example, if you separate the very human need for friends from the practical need for people who really understand what you in particular are going through, it might change how you approach the local problem. Maybe you can find a lot of the latter online, or through online communication with your local blind and deaf communities. That might free you up to look outside the disabled community for good friends.

Something very practical I could imagine: there are many hobbies and interests and community action groups that you could fully participate in online, and then transition to in person. Things like chess (with the right software), or book clubs, or political action groups. If you were to find something you became passionate about, from a game to helping organize the local (whatever) action group, you would get to know those people digitally first. Then when you got together you'd already be online friends and they'd have had a moment to learn and adjust to how best to communicate with you, so you could transition them to being "real" friends.

I have no direct experience with this, but I have heard Haben Girma say she has found several dear friends who acclimated fine to getting together and texting with her braille display when they hang out.

Last thought: do the local deaf and blind communities have a digital presence on email or social media? Could you start to interact with them online? I could imagine the meetups being very different if you had one or two people who you had chatted with a few times online who could pull aside with you where it would be easier to communicate. Or for that matter, if the group planned ahead to have someone transcribing so you could participate more fully...

Oh and last last thought-- not for answering online-- have you been evaluated for depression? It's hard not to be depressed for a while at times like this, and you might find it much easier to explore interest groups if you have a counselor encouraging you and an antidepressant taking the edge off any discouragement or social anxiety.
miragerain [OP] 3 points 2y ago
Those are good ideas.

I've tried looking through Meetup but can't find anything that would be accessible for me in my city.

Someone on Reddit suggested I go to a bar hopping group. I tried but couldn't hear anyone there. Tried friending some on Facebook but the conversations were basically just "How are you?" "Good." I know they were more talkative at the bar. I think they have a social time set aside for that and and don't like to use Facebook much. So I don't know how I can form deeper friendships in that case.

The Blind group does Zoom, which I can't hear. I'll ask what the Deaf one does.

One of my therapists said I have depression.
DogsSureAreSwell 4 points 2y ago
Cool. A couple practical thoughts...

Actual Meetups aren't likely to work "out of the box" for you, but a lot of Meetup groups have backchannels that might be great -- e.g., pretty much all tech Meetups have Slack channels that are more active than the actual Meetup. And you may need to bite the bullet on Facebook for a while. But that's why I'm thinking it might be good to find something where a lot of the activity can be online.

With Zoom -- if you can get them to connect a captioning service, live human captioning will cost between $1 and $3 a minute, and some offer that as a separate interactive transcript. I can send over a list of vendors I know of if you want. You may need to offer to foot the bill. Less accurate automated captioning will probably be less. I'm assuming you can either read the captioning magnified or pipe it to a braille display.

And yeah if any therapist thinks you have depression, you can probably take that back to your primary and trade it for something that might help. Ask the therapist for advice! E.g. a common starter is wellbutrin/buproprion because it has fewer side effects. The lowest extended dose, plus maybe half a quick dose in the evening if you get wear off headaches. Ideally that sort of thing is monitored by a professional, but if your insurance is lousy, a primary will do. And the folks that know you and your history can probably point you to things. Heck, puppies are excellent antidepressants and mostly communicate through licking and biting.

Last last thought: remember we're all miserable right now. Depression diagnoses are apparently something like 3 times normal this year due to social isolation and politics. If you can do something short term to have some social contact, like taking an online class or moving in with a relative, do it. You don't need to fix your whole life this year. With meeting up being so hard with Coronavirus, if you make it through the year not feeling miserable you deserve a medal. So don't beat yourself up for feeling discouraged. Just take some practical steps and move forward.

Oh and there's always the hail mary: you could put a tinder or craigslist or something profile just looking for someone to go for a walk with a deafblind person. I dunno if it would work but I suspect the novelty might bring out someone curious. Hopefully someone fun-curious and not weird-curious.

Ha and a second thought after a last last thought: remember that people in assisted living and physical rehab are going bonkers with boredom and loneliness. New friends don't have to be your age (though with car accidents and such you'll find people of every age in rehab). If you called a few local facilities and offered to volunteer to show up and sit with someone lonely and hold their hand and read them a book or bring a magnetic chess or checkers board, one of them might jump at the chance. And then you would be one on one in a quiet room with someone, not in a crowded bar.
miragerain [OP] 1 points 2y ago
Thanks for the advice. I'll ask my Helen Keller counselor about the Zoom captioning, maybe they'll have something.
AtriceMC 4 points 2y ago
Sometimes the best support groups are close friends and family. Mine is.
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