A support network can be incredibly helpful in finding resources and achieving your goals. Where do you turn for support? This month, we explored ways to expand your support network through support groups, blindness organizations, and other communities.
September 18, 2019
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Resource Roundtable – Creating Connections
Presented by Debbie Worman
September 18, 2019
Debbie W: Welcome everybody to our Resource Roundtable discussion group. Tonight, we're going to explore three main ways to build your support network. I want to talk about support groups, I want to talk about joining blindness communities, and I want to hear how people are using social media. To get started, let's talk about a blindness community. Can anybody tell me what they think that means? What is a blindness community? Think of it as a consumer organization. What are some of the consumer organizations that you're familiar with?
Okay, Joseph, I'm going to unmute you.
Joseph: One of the places that I've used... Actually, there's two things I have used. I've used... The Division for Blind Services is one. I also started a lot of networking through the outreach committee at the Texas School for the Blind, as one of the other resources I used. That's considered a blindness community.
Just in general, how I built my support network, is by that, and then by interacting with a lot of different email lists for the blind. That's how I've gathered my support network, and that's how I get a lot of the clientele that I get to help out with technology and that's how I get people to support me and all that kind of good stuff.
Debbie W: Great. You listed some really great resources, I think. I think connecting in your state with your division of blind services. Also, states will have, most states, not every state has, but a school for the blind. Those have evolved over the years, to be more than schools where students attend. The Texas School for the Blind I know has a lot of wonderful resources. They have a wonderful website that has lots of information to share. Also, email lists are also a good way to connect with people.
When I'm thinking about a consumer organization, I'm thinking of organizations such as the National Federation of the Blind, NFB, and also the American Council of the Blind, ACB. Do we have any members on our call tonight that, in our discussion group tonight, that are members of either one of those organizations? If so, you want to raise your hand and tell us a little bit about your membership in those groups?
Okay. I have Ilana, I'm going to unmute you. Which organization do you belong to?
Ilana: I recently joined the American Council of the Blind. The NFB, that's the newspapers, I've been listening to that for years. I didn't know that there was a membership involved.
Debbie W: Absolutely. One of the wonderful things about NFB is they do have that news line, where you can listen to the newspaper. But it is foremost, a consumer organization made up of people who are blind, also its sighted family members. I know I worked for many years with many parents who had visually impaired children, through their parent's division. The NFB, National Federation of the Blind, is a national organization, and it's a consumer organization, because you can become a member and then you receive newsletters, you can belong to a state affiliate, you can also join different groups within that organization. I know they have different divisions like, there's a parent's division, a deaf/blind division. I think NFB has a writer's division. They have a senior division.
It is a group that you can join at the national level, but then it trickles down, right? You can belong to a state level organization, and then even break it down even smaller, to more specific within that organization.
Ilana, tell us a little bit about ACB, the American Council of the Blind, and why you joined that group, and what you're finding so far. Do you feel comfortable doing that?
Ilana: Yeah, I can tell you a little about it.
Debbie W: Okay.
Ilana: I belong to four telephone support groups for the blind, visually impaired. Not everybody is blind in the group, but with varying amounts of loss of eyesight. In one of these groups, the facilitator of the group mentioned something called ACB Radio, and told us the telephone number to call into this radio, didn't tell us too much about the radio, except that it was on 24/7, and I called that number and indeed, I got this radio show. It is on 24/7.
It is wonderful. I'm a musician, and they have two music channels with some of the best music I've ever heard. They have a talk channel. They've got, in other words, I'm so delighted with it, and then found out, where did it come from? It's then American Council of the Blind, that basically sponsors that radio show, made it happen. I've been so delighted with it, I only found out about it two weeks ago. But I’ve been so delighted with it for the past two weeks, that I did call the American Council for the Blind and asked them what do they do and how do they do it, just general questions. Told them how extremely delighted I was with that.
In the meanwhile, the person who had, in the support group, mentioned this radio program, she's part of the California Council of the Blind. And I was so pleased that I decided, I'm going to join the California Council for the Blind.
Debbie W: Great.
Ilana: I didn't realize that the California Council for the Blind was part of the American Council for the Blind.
Debbie W: Good. You found out about this small part of ACB, which was the radio show. Then you were so curious, you investigated more, you found out about the national organization, ACB, and then you found in California, they have a state affiliate. Good for you for finding all that out. What are you finding most helpful at the time for being a member? Are you brand new, are you learning about their magazines or other groups, their conferences?
Ilana: I don't actually know anything else about them. I haven't yet gotten the... I will be getting some material in the mail, that tells me about the groups and so forth. Primarily, for me, it's the radio.
Debbie W: Okay. Good. The American Council of the Blind is acb.org. On the recorded version of this discussion group on Hadley's website, we will have all the contact information. They do have an 800 number. It's acb.org, is the website. Notice in the name, American Council of the Blind. In that name of, we know that the organization is made up primarily of blind consumers.
Thanks for your information on that, I appreciate you sharing that, Ilana.
Ilana: You're welcome.
Debbie W: Okay. Great. I have guest area code 512, do you belong to NFB or ACB? I'll unmute you. Go ahead.
Carla: Yes, I belong to the blind merchants. That's actually a part of NFB, is the National Association of Blind Merchants.
Debbie W: Blind merchants?
Debbie W: Okay.
Carla: NABM. We are actually part of the business enterprises program, basically for blind individuals.
Debbie W: Okay. What do you find helpful about belonging to that particular group?
Carla: Okay. So that particular group has programs for all the blind merchants, where you can get rebates for the cafeteria [inaudible]. Better than that, they organize a conference every year that is called BLAST, and everybody who belongs to the business enterprise programs attends to this conference. It's a lot of great networking.
We also have our own Austin NFB chapter here, and it is all so great. It's just a great way to share information. If you know a little bit of this, you can share it, and if they know more than you do about it, they can also help you. Sometimes, you just need to talk to somebody who can understand exactly where you are standing. You know how you feel and things like that. It just works in many different ways.
Debbie W: Wonderful. I like what you said, it's a great way to get together with somebody who you can share information with, but better yet, understands where you're coming from. Somebody who shares a similar experience.
Debbie W: Right. I didn't catch your name, what's your first name?
Carla: My name is Carla. This is my first time. I didn't actually set up an account or anything, I was at ACB and I just clicked on the thing. I'll work on that later. My name is Carla.
Debbie W: Okay. Welcome, I'm glad that you found us your first time. I'm glad that you're here. Thank you for sharing. Already, your first time and you shared. You should feel really proud of yourself. I know a lot of people are afraid to share their first time. Thank you, thank you for sharing that information.
A member of NFB, and the blind merchants division. So thank you. Mike, I see that you have your hand up. What do you have to share? You're unmuted.
Mike: I'm a member of the NFB. Been so for about the last six years. This is a great organization. One of the highlights is our convention every year. There's 3500 blind or low vision individuals there. We just came from Nevada, and everybody had a good time. We danced and gambled. The NFB has three levels. It's national level, then there's state level, then there's county level. I'm in New Jersey, we have a big convention, our convention is coming up next month. I would suggest the people that's low vision or no vision, to join one of these organizations and go to the convention at least once. It's a eye opening experience, where you will not believe the level of people with blindness. We're judges, all the way to doctors, to teachers, to educators. You just be amazed at how far people with no vision go in this world. That's why I would highly recommend anybody that can afford it, to go to the convention. They give us scholarships. Every year, if you're going to college, they'll give you a scholarship. They help you with organizations, as far as getting Perkins Braillers, screen readers. It's just a awesome organization to be a part of.
Debbie W: Great. I think you're a good commercial for NFB. I heard words like awesome, great, eye opener. I think that would encourage just about anybody to jump and go to that convention. I've been to NFB conventions, and they are fun. I went a couple times to meet some of the parents of blind children through that division, and it is, it's a lively bunch, and you really have a good time. You can meet people from all walks of life and pick up some good pointers and resources. Thank you of sharing that, Mike. I'm glad that you shared that. Sometimes, it can be expensive to go to a convention, right?
Mike: Yes, it is expensive. If you get a scholarship, they help pay for it. That's why I say, if you can afford it and save up for it, because it costs about $1500, $2000 per person. It's well worth it. If you're going to be a couch potato, then don't go, but if you want to just go out there and be amazed at the people that's out there, and what we can do as being visually impaired. It is a great place for networking, because a lot of people that's visually impaired, they just sit in the house and do nothing. It just gives you the mobility to say, look, go out and do it.
Debbie W: Right. You know what you said, it can be expensive. I know some people will even ask their local Lion's Club to help sponsor them. It's good to save some money ahead of time, if we know we're going. Don't be shy about asking your local Lion's Club to sponsor you as well, that's a good way. If your community doesn't have a Lion's Club, maybe a Rotary Club or some service organization, because I think everybody on the discussion group tonight can hear Mike's enthusiasm.
It certainly is a time to get out there and put yourself out there and meet new people. I like the fact that you don't sit at home and you're not a couch potato, Mike. I hear that loud and clear.
Mike: No. Well, you know you can do GoFundMe.
Debbie W: Okay. Sometimes... so that's a good resource. Sometimes, when we're on a budget, it's good to know those things that can help us. We don't want to be limited by our budget if there's some exciting things we want to try. Definitely, attending a national convention like NFB or ACB, really for someone who would like to meet more visually impaired people, from all walks of life, all over the country, all people, different professionals, you do have that opportunity, right?
Mike: Yes you do.
Debbie W: Great. Thanks for sharing your experiences with NFB, I appreciate it, Mike.
Mike: You're welcome.
Debbie W: Okay. NFB would be nfb.org. National Federation of the Blind. Again, catch the word of. Its organization made up of people who are blind. Of the blind. National Federation of the Blind. American Council of the Blind. That one little word changes everything, of. Helen, I'm going to unmute you. What do you have to share?
Helen: I'd like to thank everybody first and foremost for throwing in, because I'm totally isolated, very new, I don't know any other blind people, but I do have something to add. I'm very fortunate, because in Tucson, we have Sun Sounds radio for the blind, which you can look up online and listen to our streaming. They read the daily newspaper for our town. They read the daily newspapers for the surrounding towns and the weeklies. They read national magazines, and they have the radio program. It plays one station.
They give out the radios for free to people like myself that are blind. When you're totally isolated and new to this, and you've lost everything you had as a life before, and you were in HUD, and you're homeless like I was, it was nice to have someone read the paper, a normal thing, one more, just going back to normal again.
I'm shouting out for Sun Sounds Radio. Like I said, you can look it up online. It's wonderful that everybody's talking about the ACB and the NFB, and I'd like to give a quick shout out to Ilana, because I also am a musician, and I've been looking for other musicians to play music with for a handful of years now. It's nice to know that the blind musicians are out there, and I look forward to finally contacting and meeting some.
Debbie W: Great. I think you could find blind musician groups in both ACB and NFB. Helen, can you spell the name of that radio program that you mentioned?
Helen: Yeah. It's called Sun Sounds. I believe it's, like the sun in the sky, S-U-N, S-O-U-N-D-S.
Debbie W: Sun Sounds, okay.
Helen: Yep. I believe it's sunsounds.org. They have-
Debbie W: Is that an Arizona thing or is that a national?
Helen: It's an Arizona thing. It's wonderful because they read the daily paper, or the weekly paper from Yuma, and they read the daily from Tucson, and then they read, what is it, the New Yorker, and they read Financial Times. They read national magazines. They have a poetry program on Sunday evenings. It's 24/7.
Debbie W: I'm glad that you found that. You raised a very important point is that, sometimes it's just easy to become isolated. You're vulnerable, first of all, because someone's new to vision loss, what do I do? There may be economic reasons. Anybody that's isolated, it's very hard to reach out. We have to be conscious of that and be aware of how we can provide resources to people who are feeling isolated. The simple step of listening to the radio, as you said, proved wonderful for you, right?
Helen: Oh yeah, because it gave normalcy back to a life that literally, I lost my home, I was squatting, I was homeless, I went to the courts, it was ugly, it was a nightmare. It was nice to just start over with normalcy, having somebody read the daily paper, and catch up with the magazines that I can no longer see. Just try to replace it. Of course, we have the talking books program, that's the other one that I'm on. So I get to have music lessons through the National Library for the Blind. I get my cartridges in the mail, and my machine.
These brought normalcy back, as I'm starting to put my life back together as, I'm going deaf as well. I'm in a wheelchair. I'm really isolated, because of those things. I'm putting a normal life back together, as the new normal, starting with listening and changing how I approach the planet, the world and everything else.
Debbie W: I applaud you for looking for resources, and for joining us tonight, and sharing your story. I hear you as a very resilient person, and I applaud you for putting yourself out there. I would also encourage you to try NFB's news line. That would be a good way to stay connected as well.
Helen: Thank you again to everybody for throwing in. You've been helping me so much. Thank you, Debbie.
Debbie W: You're welcome. Okay. Helen raised a very good point about, no one comes knocking at our door, and just says hey, I'm here to help you, let me in, I want to be your friend, here's something you can do. We have to really be strong and put ourselves out there whenever possible. We have to be good self-advocates. This is a beginning step here, in the discussion group, to learn ways to build your social community. One way we're discussing now is to try and do that through joining national consumer organizations.
I have an area code of 603. 603, what do you have to add?
Jodi: Yes, hello, this is Jodi in New Hampshire. On the subject of radio stations, I wanted to mention the Blind and Beyond radio show, which is on Sunday nights at 7:00 Eastern Time, on WOKB Radio, which you can pick up either on your Amazon device or TuneIn Radio, or you can go to their website, which is blindandbeyondradio.org, and listen to their show on their website.
It's a radio show for the blind, by the blind, and the sponsors are all blindness-related products, so you can learn about other products too. It's really nice. Like you mentioned before, then you don't feel like you're the only one.
Debbie W: Great. Thank you. That's a wonderful resource. I'm hearing that these radio programs are really helpful for entertainment and for information, correct?
Debbie W: Okay. Great. Thank you for sharing that. Blind and Beyond, is that .org?
Debbie W: Okay. Got it. Okay. Thank you.
Debbie W: Thanks for sharing.
Jodi: Thank you.
Debbie W: I have area code 480. Would you like to share something about NFB or ACB or any other consumer organization?
Debra: Yes. My name is Debra. Actually, I want to address Helen, because I live in Phoenix, Arizona, and she mentioned that she was in Tucson. I retired about a year ago from state services for the blind in Arizona. I wanted, she said she was brand new, and I have some other resources for her in Tucson. There are state services, and I don't know if she knows about these, that could help her and get her some of the things that she needs. I wanted to see if there was a way that we could get connected, because I do have some information I could pass on to her.
Debbie W: Okay. The best way to connect us would be to connect through me.
Some other connections that people might want to be aware about, for people searching for jobs or wanting to learn more about what kind of jobs can visually impaired people hold, what jobs are out there, how can I find them. There's aphcareerconnect.org. This used to be through the American Foundation for the Blind. They now have joined up with APH. On this website, it's for job seekers who are visually impaired.
One thing I like about Career Connect is that you can find a mentor. Say for instance, if you wanted to, were considering trying to find a job as a counselor, you could see if anybody is on there that could tell you about their experience. That's a good place to check out if you're in the job market or wondering what's out there.
Then also through APH is familyconnect.org. Family Connect is for parents of children with visual impairment. I know that to be a good resource, I used to work in the parent family program here at Hadley, and I know a lot of parents like that website to gain information. Those two, the Career Connect and Family Connect.
So we talked a little bit about national resources and consumer groups, and belonging to those either starting at the national level, and then moving down to the state level. Then, joining some affiliates. You'd be surprised what kind of different groups they have. Writers groups, musicians’ groups, lawyers, students, LGBT groups, senior groups. I would encourage everybody to check those out, if only to see what's in your area. See what might be a good fit. Also, inquire about all the services they have. I believe they both have newsletters. Those would be good to find out about.
The next thing I'd like to talk about is support groups. I would be curious to see if anybody in the discussion group tonight belongs to a support group. A support group, either made up of people who have low vision, people who have had vision loss for a while, people who are new to vision loss, is anybody in the discussion group tonight a member of a support group? Okay, I have caller 603.
Jodi: It's Jodi in New Hampshire again. I'm actually the facilitator for the local support group. We're part of the New Hampshire Association for the Blind, which is called Future In Sight. We have a really active support group here.
Debbie W: Okay. What is your group, how often does it meet, and tell us a little bit about what you do? What do you do in your support group?
Jodi: We're only a year old. We have about a dozen members that come regularly. We basically exchange as much information among ourselves, there's a lot of experienced blind people and a lot of new blind people. The experienced blind people like to share a lot of resources and information with the newly blind people. For example, our next meeting, we're going to have a local person from the transit system come and talk and-
Debbie W: Oh, okay.
Jodi: ...bring large print bus schedules, and promote the... We have both the city bus, and then the para-transit senior bus.
Debbie W: Support groups, you bring in guests sometimes to just talk about resources?
Jodi: Right. Yeah. Mostly last year, we didn't have guests, we just talked among ourselves, got to know each other and everything. One month we'd talk about low vision aids, another month we'd talk about resources like the catalogs for low vision and that sort of thing. Just share and of course talk about Hadley. Just share the things that we're familiar with, with the people that aren't familiar with them. We just take for granted, if you've been blind all your life, you take for granted a lot of the resources, but of course, people that are just losing their sight aren't familiar with them. It's kind of rewarding to be involved and to help people out like that.
Debbie W: Right. That's a really valuable piece of belonging to a support group, is knowing that you can give back, that you can provide information to somebody. Oftentimes, we're on the receiving end of things. It's nice to be the giver and say hey, have you tried that, do you know about that, have you-
Jodi: Yeah, or even just to say, you can do it. We've done it and so can you. Just basically to encourage people.
Debbie W: Absolutely. Really, just really giving people that hand up when they're lost, or new to vision, and having a hard time finding resources, or just feeling grounded again. It's nice to hear from somebody that says, been there, done that, right?
Jodi: Exactly. That's what we say a lot. We've been there, done that.
Debbie W: Okay. Great. Thank you for sharing that, your experience with the support group. I'm going to move onto Joyce.
Jodi: Thank you.
Debbie W: Thank you. Okay, Joyce, you're up.
Joyce: Hi, this is Joyce. I actually, I was losing vision over time, and I really never thought that I would want to be part of a support group. About a year ago, I attended my first support group, and it was at UC Berkeley, it was just a group because they have a low vision clinic there. I really enjoyed it. But, it's too far for me to go to on a regular basis. The leader just reached out to me recently and asked if I wanted to keep attending, and I said I couldn't because it was too far, but that I would want to start a virtual support group. She thought that was a good idea.
I'm going to start a independent support group that's going to be monthly on the phone. I actually have been able to connect with some people in North Carolina that have independent support groups, and they've taught me what they've learned over the years, to start one. I think I'm ready to go.
Debbie W: Good for you.
Joyce: If anyone's interested, I will send you the information, Debbie. Anyone's interested, you can get that from her.
Debbie W: Yeah. You raised a couple good points is, sometimes, it's just hard to go to a support group, because we don't know what's going to happen there, we may feel we're like, I'm too shy, I don't want to share, I don't want to open my mouth, it's too difficult. I remember once going to a support group on a different topic, and sometimes I would go and just stand outside the building, and then I would leave. Then after a month, I finally got my foot in the door. Then I finally found the seat. Then I sat down.
I didn't say much for the first couple months, I just soaked it in. It's important that you go at your comfort level. No one's going to make you talk, or do you make people talk, Joyce?
Joyce: I don't know. I'm going to start; I'll start my group in a couple months. That wasn't the issue. It's just, it's too hard to get there, the transportation's too hard for me to get there.
Debbie W: Transportation. Yeah. Then, the other point that you made was, if there's not an existing group that works for you, whether it's transportation or it's not meeting your needs, hey, you're the go getter that says, I'm going to try and start one. Good for you. I wish you the best as you do that. There is the website, Vision Aware, has some good information on there about starting support groups. We'll put that in the show notes.
Debbie W: Okay. Also, Vision Aware has a real good directory for support groups for people who are looking for support groups. Joyce, you keep us updated so we know how that group's starting out, okay?
Debbie W: Okay. Great. Mike, you're unmuted. Do you belong to a support group?
Mike: Eyes Like Mine.
Debbie W: Eyes Like Mine.
Mike: Yes. It's a small group. We do things like, we gather [inaudible], we have lunches together, we have dinners together. If there's something going on, we'll go as a group in support of one another. With support groups, my opinion on them, they can be very good, or they can be very bad. The good part about them is people like us. We talk and we motivate each other, say look, you don't have to sit at home and do nothing. Even if you go outside and just walking down the street and come back, and do that a couple of times, it's very motivating, and it's just exciting.
As a veteran, I'm a support group, that support group, I've been in there for about three years now. Our moderator, her name was Deidre Dockery, she got me to go back to school. I just graduated in May with my bachelors in sociology.
Debbie W: Congratulations.
Mike: Thank you. Now, I'm attending [inaudible] for my master's degree in VRT. And I'm totally blind.
Debbie W: You are definitely not a couch potato. You are out there. Do you feel that the support group was a huge encouragement for you moving forward?
Mike: For me, yes, 100%.
Debbie W: Great.
Mike: As a veteran, they gave me all of my technology needs, and they just... The older guys just say hey, go for it, because I was sitting in the house doing nothing, just going stir crazy. The support group is the one that motivated me to go, and like I said, I just did it, and I'm reaching new levels that I didn't think I could, being totally blind.
Debbie W: Right. Congratulations. You're certainly-
Mike: Thank you.
Debbie W: You're doing great. Okay. One of the things we're learning is that, support groups, building those connections through a support group can really motivate us to try new things. One of the things that got brought up by a couple people here is, what to consider when you're selecting a support group. You might want to think about, is it geared toward a specific eye condition. Is it low vision, is it a macular degeneration group, is it geared to a specific age group?
There are two groups that I will let you know about for seniors, and they are on the phone. I don't know if people are familiar with an organization called Well Connected. Well Connected is a community for seniors, it is free, they connect by phone. I believe that the age is 60+. They have three support groups for people with vision loss on the phone. They also have a wealth of other resources. I really encourage people 60 and older to check out Well Connected. Again, we'll have that on the website.
There is also a group called TeleSupport, which also is for seniors, and that is also a phone support group. I'll have that information as well.
So, is the location convenient? And as Joyce said, no, it wasn't, so she's going to start her own. Maybe finding, creating your own group or finding one on the internet, or on the telephone. If the distance is hard to get to and you really like the group, is there transportation assistance? Is there some kind of assistance you can get for transportation?
Become familiar with the facilitator or the moderator. Do you feel that it's going to be confidential and comfortable for you? What is a typical meeting like? You heard me ask a couple people here, what is your meeting like. Is it free? If not, are there any fees? Then, really consider, is this going to meet my needs? I think any support group, one person, this might work for one person, but it might not work for another. One size doesn't fit all.
I say, give your group three times, go and see if that's going to be something that you want to try. Give it a chance. It may not be for you, even though someone highly recommended it to you. Do give it a chance.
Okay, I have 845. I'm going to unmute you, do you have something to share about support groups?
Cheryl: Hi, this is Cheryl.
Debbie W: Hi Cheryl.
Cheryl: Hi. First, I'd like to agree that sometimes, some support groups are good, and sometimes, maybe they're not so good. That's why I've been a part of 12 step programs for 30 years. The suggestion was, go to six meetings before you make a decision. I use that with any kind of support group, just giving it time to see. My problem too is transportation. Where I live, there is no public transportation. I'm always looking for ways to do things on the phone. I do get out and do things, but phone meetings are important. I appreciate what's been shared today. Someone asked me about, because I have a counseling background, about starting a group. I like that idea.
I have blind people I talk to, some of the people I've been very close to are no longer around. It's building that network. Continually building that network. I do that through Guide Dog Users, and Guide Dog Users of New York. I do that by phone, because I'm not able to get, Manhattan is two hours away. Some of them are, when they're in-person, they have a conference, turn on a phone, so that there's those of us that are on the phone line, like we are right now, who are able to participate in the meeting that's the physical meeting.
I'm grateful for technology, when it's working, and for the person who's talking about starting a group, there's freeconferencecall.com, or I don't know much about this, Zoom. What I like about the phone meeting is that we're all muted, and that when we want to share, we'll hit *6, and then it's more civilized. I'm lost for the word. It's not an open line all the time. Everybody's muted until they want to share, because that makes for a better meeting where we can hear each other also. I just thought I'd- thank you.
Debbie W: Thank you for those two resources, freeconferencecall.com and then this platform, Zoom. I think both are great ways to connect with people. I like what you said, Cheryl, right, your name was Cheryl?
Cheryl: Yes. It's Cheryl.
Debbie W: Okay. Cheryl, I like what you said about, this has to be continuing. You have to... It's wonderful to keep continuing to build your support network, to keep reaching out there. One way to do that is what you said, is to find similar interests. You're belonging to a guide dog group, right?
Debbie W: That's sharing a similar interest, right? You can find community in identifying your interests. Mike belongs to a veteran’s group. Ilana and Helen were talking about being musicians. That's another way to easily connect with people, is to identify your interest, and to give-
Cheryl: Yeah. I'd like to just say one more thing too, in that, I find being a part of groups that aren't specifically blind too, the benefit of when I'm on a phone meeting, I'm equal with all these other people. None of them, it's like, my vision's not an issue. Although I need people who are blind and visually impaired to talk to, communicate with and bounce things off of, I find when I'm on a meeting of, some of them could be 100 people, none of them know I can't see. Whether they're writers, musicians or whatever, I'm an equal person.
A friend of mine pointed that out. I just thought I'd share that, because that's an important part of our lives also. Thanks.
Debbie W: You got it. I didn't mean to be ignoring that part tonight. We really have been focusing on joining blindness communities and blind support groups, but you raise a most valuable point. We shouldn't be just looking at those areas, because for instance, maybe at the local library, there's a book club that you would like to join. You don't have to join the “blind book club,” right, Cheryl? You can join the book club.
Debbie W: The point being, figure out your interest and that you enjoy doing. The benefit of joining a blindness consumers group or a support group for people who are visually impaired, you may possibly find a mentor, you can talk to people who've been there, done that, but also, look outside that circle as well. That's a very good point, and I'm glad you brought that up. We didn't want to ignore that or... I'm not pushing you, “Only socialize with blind people.” Don't take me wrong on that one, okay, Cheryl?
Cheryl: Oh, I never did. Oh no, not at all. Not at all. Because we need each other to laugh about some of the situations that we go through out there. No, I didn't take it like that at all. Thank you.
Debbie W: Oh, okay. Good. Okay. Thank you for your input, I appreciate it. Thank you.
So, benefits of participating in a support group, we've now heard from people who belong to support groups, is it helps you feel less lonely and isolated. In addition, you gain a sense of empowerment, self-confidence, and self-control. Getting that new normal, and Helen talked about control back in your life. Learning to cope in healthy ways and adjust to vision loss. It's a way, once you build trust in that group, it really is a forum to talk openly and honestly about your feelings without feeling judged. It helps you manage stress, depression or anxiety. It also helps you develop a better understanding of what to expect in your situation.
You gain practical advice and useful information, you discover resources, that's what we're talking about, Resource Roundtable. You discover resources, services and devices that may meet your needs, and you also have the chance to help and support others. You can also be someone who reaches out and gains that satisfaction in helping others. It's a way to receive inspiration and motivation from other stories, kind of like what we're doing tonight, hearing from each other. It helps you set goals for the future and prepare with hope. Just to know that there's other people sharing similar experiences.
Those are some benefits of participating in a support group. I have Barb. Barb, would you like to put in your... I'll give you 10 cents' worth, how's that?
Barb: I have been a member of a number of different support groups over the last 16 years. I have a degenerative eye disease. I have slowly been losing my eyesight over the past few years. The one here in Joplin, their facilitator is actually a person who worked for the Division of Blind Services. They come to the support group each month, and she will go around and ask if anybody has any questions, and if nobody does, then she will just pick a topic that most blind people have to learn how to adjust to, and we'll talk about ways that we have found to overcome... They will also make some suggestions on what can be done, or resources, or different things like that.
Debbie W: Okay. Are you finding that experience valuable, Barb?
Barb: When I can get there.
Debbie W: When you can get there. Oh, that transportation issue rears its ugly head all the time, doesn't it?
Barb: Yes it does. They do have a bus that goes around and picks up people, but I don't live in Joplin. I live outside of Joplin. So I can't ride that bus. I have been a member of support groups through Facebook, on the computer, we did ... I've been a member of some that were actually voice, we could log in or call in. There's one particular area where we had our support group. My number one line of support is actually family members.
Debbie W: Okay.
Barb: I have three other family members who have vision problems as well as I do.
Debbie W: Okay.
Barb: Basically [crosstalk]-
Debbie W: Barb, you've already given us two ideas, we're going to run out of time tonight, we're not going to be able to touch on social media. Under social media, I had things like Facebook, blogs and Twitter. We're going to run out of time tonight. We're going to cover that next month. Also, I did, you're stealing my thunder here, Barb. Also, I wanted to talk about how we can engage our family and friends to build our support networks.
Thank you for sharing both of those. I think we're going to pick up this topic again next month, if that's okay. We'll just have part two, because we're certainly going to run out of time tonight. Thanks for sharing all of that. Did you have anything you wanted to say to wrap up?
Barb: No. I don't believe so.
Debbie W: Okay. Thank you. Thanks for sharing how support groups have helped you. We're certainly hearing that they've been helpful to a lot of people here in tonight's discussion group. Thanks for that. I appreciate it.
Debbie W: I have area code 813, ending in 419. I'm going to unmute you. What do you have to share?
Vandalin: Hi, this is Vandalin. Support groups that I've been affiliated with at your local Lighthouse for the Blind, have support groups. Also, I'm a part of the support group for the FFB, which is Foundation Fighting Blindness, for those individuals who have an eye disease related to the retina, like retinitis pigmentosa, Usher syndrome, that sort of thing, there are support groups as well. Earlier too, you mentioned about consumer groups, I'm a member of the NFB and the ACB.
Debbie W: Okay. Both of them.
Vandalin: Yeah. Those are very good, yeah.
Debbie W: Good. Okay. Thank you, Van, for sharing. I appreciate you bringing up the Lighthouses for the Blind, might have leads into support groups. Thanks for sharing that.
Vandalin: One more other thing. Mike was so enthusiastic about the NFB's national convention, but keep in mind that the state affiliates have conventions as well, which are less expensive. You may want to start there as a goal. They have multiple vendors and resources that are valuable.
Debbie W: Yeah. Right. That's a good point, Van, talking about at these conferences, they often have exhibit halls. You can put your hands-on devices and things you may otherwise have opportunity to actually see and experiment with, before investing dollars in them. It's a good way to but your hands on some of the technology and things like that. I know at the national convention they have a good exhibit hall for that.
But you're right, if you can't go to a national convention, try your state level first. The key is to find your niche. Where are you comfortable? What feels right? If you feel uncomfortable, why do you feel uncomfortable? How can you ... Is it just because I feel uncomfortable, do I have to put myself out there? I'll use Mike's, he said earlier, we can't be couch potatoes. We all can't wait for someone to come to our front door and say hey, I want to be your friend. Hey, I want to ... I just moved to a new apartment building, and no one's come knocking at my door yet, so I'm going to have to be the one that reaches out. Sometimes, we just have to put ourselves out there.
Joseph, you have your hand up?
Joseph: Going back to the NFB and the convention, and even regarding transportation, if you honestly want to, and this is just a plug for a radio station that sponsors the NFB, I don't know if any of y'all have heard The Blind Side, by Chris Nusbaum, but they did a very good job. What they did is, they took, and they streamed the NFB through their Zoom channel, and-
Debbie W: Oh cool.
Joseph: [crosstalk] on 195 The Globe.
Debbie W: Oh, cool.
Joseph: Which was another good deal. Helen, I'm also willing to be a person of interest that might be able to assist you with some of your issues.
Debbie W: Thank you, Joseph. Thanks for reaching out. I applaud everybody for... See, just being part of the discussion group, we're already finding new resources. Thank you.
Okay. We are running out of time tonight. I sure appreciate everybody's input, everybody's sharing how blindness ... have helped them, how support groups have helped them, learning a little bit about each of you and where you're at and reaching out, making connections.
Does anybody have anything profound to share before I send us off for the evening? Oh, there's somebody. I have 813. Go ahead 813.
Vandalin: I'd like to add to Mike's profound saying, don't be a couch potato. Mine tonight is, get in where you fit in.
Debbie W: Get in where you fit in. I'm sorry, I'm trying to recognize voices. Who is this?
Debbie W: Van. Okay, Van, thank you. Get in where you fit in. Okay. On that note, we're going to end, and I hope everybody comes back next month. Thank you everybody. Take care.