Creating Connections, Continued

This month we continued the conversation from last time on connections. We shared how to expand connections online through social media and listserves, and then discussed ways to build stronger connections with friends and family.

October 16, 2019

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Audio Transcript


Resource Roundtable – Creating Connections, Continued

Presented by Debbie Worman and Jennifer Ottowitz

October 16, 2019

Debbie W: Welcome, everybody, to tonight's discussion, Resource Roundtable. I want to welcome back people who have joined us before and welcome all our new guests. My name is Debbie Worman. I'm the host of Resource Roundtable. We started it a few months back. Along the way, I lost one cohost, but, luckily, I've picked up another, and that is Jennifer Ottowitz. Jennifer, do you want to introduce yourself?

Jennifer O: Hi, everyone. As Debbie said, I'm Jennifer Ottowitz. I'm a learning expert with Hadley, and I'm happy to be here with you this evening.

Debbie W: Great, welcome. Thanks for joining us as the cohost. I'm a learning expert at Hadley as well, and I won't tell you how long I've been at Hadley. I've been there a while. Maybe I've had some of you as students. So, tonight's discussion, we were going to pick up where we left off last month, talking about creating connections, and we talked last month about creating connections through possibly joining consumer organizations such as NFB, the National Federation of the Blind, or ACB, The American Council of the Blind, and the benefits of joining those organizations. So, if you weren't at that discussion, please go to the website, and you can listen to that discussion.

We also talked a lot about support groups, and I was thrilled to hear so many people talking about support groups that they belong to. Jody, or Judy, I'm trying to remember. Sorry, one of you was starting a support group, so I appreciate your sending your information to me so I can share that with people as they ask.

So, tonight, we thought we'd just continue the discussion about creating connections. What we talked about is, really, no one shows up at your front door, knocks on the door, and says, "Hey, I'm here to help you. Let me give you all the information you need." Really, people need to be self-advocates and reach out. Sometimes that's really hard for people. Sometimes it's not but creating those connections in a variety of ways keeps us open to gaining resources.

At our very first Resource Roundtable, we talked about gathering resources, not just names of organizations and phone numbers, but also action plans and strategies, and gaining new support groups, and connecting with people. So, think of, as a resource, as, not just an organization you call, but much more than that.

So, tonight we were going to cover, as much as we can, and I'm sure we're not going to get it all covered again tonight, but we want to talk about social media, and then we want to jump into how to build greater connection with family and friends. Does that about cover it, Jennifer? Is that what we decided to do tonight?

Jennifer O: Yep. That sounds like the plan.

Debbie W: Okay. So, how about we start off with social media? So, when we're talking about social media, it's all about the internet, right? It's all about smartphones. It's about how to connect to other people through those kinds of connections. It's kind of an interactivity where you post things, where you put out your interests, where you share information. When I think of social media, the three top social media I'm thinking of are Facebook, LinkedIn, and also Twitter.

So, before I ... I know you don't want to hear my voice the whole evening, so why don't we have people raise their hand? If you're on any of those social media, talk about your experience and what you find beneficial. Okay, Jody, I'm going to unmute you. Jody, go ahead please.

Jody: Hi, yes. I do use Facebook and Twitter. I'm on LinkedIn, although I can't remember the last time I connected through it, but my favorite way of connecting with people are through email lists. I'm on quite a few guide dog email lists and crafters' email lists. So, I would say I actually prefer email lists over Facebook. The NFB has, if you go to, I think it is, they have quite a few email lists, long, expansive lists. You can join their lists, or the guide dog schools have their own lists, and that sort of thing. I do Facebook, and I also use my iPhone, and I find that to be the easiest way to access Facebook and Twitter.

Debbie W: Jody, can I ask, what made you seek out those resources? Why did you join up... There's so much out there, so I'm curious. What made you choose Facebook?

Jody: Probably because I wanted to connect with people that I went to high school with, and, initially, and family. Also, Seeing Eye has a nice graduate page that you can keep up to date with people on, so I'd say just mostly to connect with school friends and family.

Debbie W: Okay. Well, great, and the listserv that you joined, is that people that share the same interest as you do?

Jody: Yes. Initially, I, before I got a guide dog, I wanted to find out what is the reality of day to day life for the guide dog, aside from all the miracle stories that you hear. Hearing about when they throw up in a restaurant and all those lovely things that dogs do in reality, as opposed to the miraculous. It was a great way of learning about guide dogs before I got one. That was 13 years ago, so...

Debbie W: Okay.

Jody: Now I'm on quite a few guide dog lists.

Debbie W: Okay. So, you still belong 13 years later, so you're sharing it with [crosstalk]-

Jody: Oh yeah.

Debbie W: Yeah. Well, good. So-

Jody: Oh, another great thing that I found about email lists, probably one of the oldest ones that I've been on for like 22 years, is I have retinopathy of prematurity, which is fairly rare. I connect with a lot of people that also have ROP, and there are so many people that they've actually got one group for adults and one group for children because there were just so many people. So, I'd say that that's a great way to connect with people that have your same eye condition. I'm sure you can do that on Facebook, because there's an ROP group on Facebook. So, connecting with people with your same eye condition, especially if you're just losing your vision, and you want to find other people that share the same problem.

Debbie W: That's a great idea. Don't you think that's ... I think that's a great idea, Jennifer, don't you? Just to get on and maybe connect with people who have a similar eye condition.

Jennifer O: Absolutely. You can learn so much from each other, and find out some really good tips, and get good information just about your eye condition itself, too.

Debbie W: Yeah, and if you're not finding a group on there, I know you can create your own group and reach out. So, if you're not finding what you're looking for, it's a way on Facebook that you can create a private group yourself and see how many ... and get people that way. So, if there's already existing groups, reach out for that. Jody, thanks for sharing how you're using social media.

Jody: Thank you.

Debbie W: Okay. Appreciate it. I have Barb. Barb, you want to share? Go ahead, Barb.

Barb: Yes. Okay. I thought about ... Now, I have Usher syndrome, which is a hearing loss, and also retinitis pigmentosa, which is my vision problem. I started off with a group where ... Now, you may have to help me on this one, a group of people that have Usher syndrome. It was an email list. Then, we went into a voice chat program. I haven't been on there for a while, so I'm not sure that it's still available. Email, I have. I'm part of an email list for people with RP, retinitis pigmentosa, and I use Facebook quite a bit. Those are basically the only social media I use.

Debbie W: It's interesting to hear both of you talking about listservs, because I wasn't even going to put that on for tonight's topic. I was thinking listservs went the way of the dinosaur when Facebook and Twitter and things come along.

Barb: No.

Debbie W: So, it's interesting for me to hear that they're still functioning, so that's wonderful information for me, and I think our listeners, as well. And Facebook, Barb, how are you using Facebook? What do you usually, mainly use Facebook for?

Barb: Well, I started out with family. I'm one of seven, and then I had to be one of the main ones that lives out of state, away from the rest of the family, so ...

Debbie W: Okay.

Barb: It was a good way for me to keep in touch with the family. Then I started ... I found out that there was a Facebook page for people who have Usher syndrome, and there was a Facebook page for people who have RP. I recently found some just vision impaired and blind communities, support groups. I like gardening, so I was looking for blind and low vision people who have an interest in gardening. That's basically what I used it for. Another resource that I use is YouTube.

Debbie W: Okay. How do you use YouTube?

Barb: With YouTube, it, for me, is more of a learning about different topics that are helpful for blind and low vision people. There's several people that have their own YouTube videos where they talked about anything and everything that has to do with low vision or blindness. Sometimes it's kind of hard to find them, but sometimes people will list them on Facebook, and I go over there and check it out and say, "Oh, okay." They will post a video once a day or once a week, and I just follow them. If the title or the topic is something I want to find out more about, then I just go over there and listen to them.

Debbie W: Well, I'm glad you mentioned YouTube because that's one of the things I wanted to be sure to include, and if you hadn't mentioned it, I may have forgotten. So, thank you.

Barb: You're welcome.

Debbie W: When I was doing some research for this discussion group, I did go on YouTube, and I found a YouTube channel called Blind to Billionaire. It's hosted by a visually impaired gentleman, and one of his most interesting episodes that I watched was the top 45 blind and visually YouTube channels for 2019. He had asked people to come on and do a little blurb about their YouTube channel. There were 45 people with short snippets, who were visually impaired, talking about their YouTube channels, and I was amazed at the various topics. There was cooking. There was shooters, I mean how to use guns. There were ... just adapting with vision loss, people just sharing their personal stories. So, I'll post that to the show notes if people want to check it out, if you're interested in maybe watching some of those video channels. Jody, you have your hand up. I'm going to go ahead and unmute you. Go ahead, please.

Jody: Well, I just want to make a quick comment. You said the email listservs are like dinosaurs, and my son made the same comment. He said, "Why don't you just use Facebook?" I said, "Well, it's a lot easier if you're blind to use email listservs than it is to use Facebook, because Facebook has gotten a lot easier than it used to be, but it's still a lot more complicated than ... " That's why I prefer email lists, but I was also going to mention YouTube. Now it has been mentioned, but Hadley has some terrific YouTube videos too.

Debbie W: Well, thank you. Thank you. I do encourage people, if you're on Facebook ... I don't know why I'm having trouble tonight. Facebook, go ahead and like Hadley so you get Hadley's posts as well. That'd be a good thing. We'd appreciate that, and thanks, Jody, for the plug for the Hadley YouTube videos.

So, what you have to decide if you're going to reach out for social media is how, as we've been talking about, and you can tell by my questions to both Jody and Barb, is how ... Think about how do you want to use the social media. Do you want to stay connected with your family and friends? Do you want to stay up to date on current events? Are you seeking out more services and products of interest to you as a visually impaired person? Are you wanting to connect specifically with people who are visually impaired? For example, as someone shared, if you're a guide dog user.

Of course, it's always fun to just catch up with people you haven't been in contact for a while. Recently, I found somebody on Facebook that I haven't talked to for 20 years, so that was fun to just see how he was doing. So, you don't have to be on all of them. Choose one or two that might be of interest, and, as Jody shared, some things aren't accessible, but you'd be amazed, really, how accessible Facebook has ... Facebook is very aware of the population of visually impaired people who want to use Facebook. So, there's ways to do that. Jennifer and I, when we were talking about how to present this topic, we both decided we were not going to talk about how to access that technology. It's just beyond me, and, Jennifer, I don't think you're on Facebook, are you?

Jennifer O: No, I'm not.

Debbie W: Okay. Okay, but I will post some things in the show notes for people who are interested. So, think of Facebook as a social network for connecting with family and friends, long lost friends, maybe high school people, old ... people, maybe, that you went to school, that you want to connect up with. It's a way to share what you're ... It's more of a social network, right? It's more of a social connection.

There also is LinkedIn. LinkedIn, L-I-N-K-E-D-I-N, LinkedIn is a network for professionals. So, if you wanted to post your resume, or to hear what jobs are out there, LinkedIn is a wonderful way to connect it professionally.

Then there's Twitter. Is anybody using Twitter? That seems to me the most popular social network. I hear it's pretty easy for visually impaired people to use. It's where you send out short microblogs, or short messages to people, and then people can pick up and respond to that. So, Twitter is another, a good resource.

YouTube, we talked about. There's also Snapchat. There's Instagram. Then, there's a lot of blogs, B-L-O-G-S, blogs where people are sharing content about their lives. Sometime in the near future, if you're interested, my Writer's Circle discussion group, we will be talking about blogs.

I don't know how much you want to cover about social media, so if you have questions at this point, go ahead and ask them. Some of this information, we'll post. We didn't get into a lot of details. Maybe later on, we can pick one, and use that in the whole hour to discuss. Tonight, I just wanted to touch base on things that were out there. If you're not real comfortable using the computer or your iPhone, don't let that scare you away. Reach out and try and find ways to connect. As I said, some of these things are very... have gotten more accessible. Does anybody have any questions about social media at this point?

Jennifer O: Debbie, I just wanted to throw in another one. Pinterest is another social media platform. I know a lot of people will post recipes. It seems like it's a lot of pictures, though, so I don't know how accessible it is with a screen reader, but maybe for folks with low vision and those who use screen readers, if you've used Pinterest before, maybe let us know, because I know a lot of my family gets recipe ideas from Pinterest.

Debbie W: I know Pinterest has a lot of cooking recipes and also crafts. I mean, I think that's a big site for people. Jody, your hand is up, and I was going to unmute, but I never muted you. So-

Jody: No, you haven't.

Debbie W: So, go ahead. Did you have something else you wanted to share?

Jody: No, no, no, you just never muted me again.

Debbie W: Okay, I'm going to mute you and lower your hand. Okay. Helen. Helen, I'm going to unmute you. Go ahead, please, Helen.

Helen: Yes, I'd like some of the others to please talk more about the email lists, the listservs. I'm very, very new to them, and I just started getting them, and there's so many. Can some of them help me maybe figure out how to find other people, and kind of scale it down a bit? I'm being overwhelmed right now. Could somebody help me out with that please?

Debbie W: Helen, thank you for your question, and I appreciate that. This is something that you raise a good, good point. Sometimes when we're jumping into something new, and people who are recently lose their vision, you get overwhelmed with resources, and you don't know how to sort them out. So, you have to have a game plan. So, sometimes, I think we need to talk about that, is how to sort through. You may think there's not a lot out there, but once it starts pouring in, you do get overwhelmed. So, how do you sort it out and set your priorities? Does anybody have any comments, or anything they'd like to share with Helen about how do you decide who to connect with?

My best advice, Helen, would be to check things out, try them for a while, and see if you're finding your niche, to find... I know in AA, they say go to three or six meetings before you make up your mind. So, maybe getting on the listserv and seeing if it's for you. What topics are you really interested in? Set your priority. Is it gaining new information? Is it socially connecting to people? Is there a topic you're specific in? Because, yeah, otherwise, you're going to get overwhelmed. Jody, I'm going to unmute you. Go ahead.

Jody: I would just suggest that you join however many you want because, at the bottom of every email, you'll find an opt-out option to unsubscribe. So, you can always subscribe, join it for a while, and if you find you're overwhelmed by the number of messages, or if the topic just doesn't interest you, you can always unsubscribe.

Debbie W: That's a good point. If you start getting too many messages and it's overwhelming, go ahead and unsubscribe, and then come back later when you feel you can sort things out. That's good advice, Jody. Thank you. Barb, you had a comment?

Barb: Yes. On the email lists, there is a way that you can get ... The word is not coming to my tongue right now. You can get a condensed version. So, instead of getting 50 emails in one day, you can get one email that might have 25 messages in it.

Debbie W: Oh. That's interesting. So, your inbox isn't being bombarded, right? You're not getting...

Barb: Right.

Debbie W: Okay. Well, that's great.

Barb: You're not getting 50 emails. You're just getting one email that has all the conversations in it, and you can pick and choose which one you want to go read.

Debbie W: Okay. Well, thank you for that, Barb. I'm thinking, and Jennifer-

Barb: You're welcome.

Debbie W: I'm thinking on the spur of the moment here, could this be a topic, then, for Resource Roundtable, that we just talk about listservs, how to use them and what good ones are out there? Is that something you ...

Jennifer O: Yeah. I mean, that could possibly be, I think. For each person, it's an individual thing as to which ones should you go to first. Which ones are going to be the most important to try? That all depends on, like what Debbie mentioned earlier, what are your main interests? Do you want to connect with people socially? If you're have a hearing loss, in addition to vision, do you really want to connect with folks who have both? Do you want resources for both? Do you want resources about ...? I know, Helen, you love music. So, is that a particular interest? So, is there a listserv for that?

My advice would be start out slowly. Maybe pick one or two to start, try them out, and if they're not quite what you wanted, as Jody said, you can opt out with the unsubscribe. I love Barb's idea of filtering them so you just get one message that has a bunch in them, and you're not overwhelmed, but I think you have to decide for yourself which ones are going to be the most important ones to you once you hear all the many ones that are out there, so ...

Debbie W: Right. Yeah, and we could recommend some to you, Helen, but in the end of things, you're going to be the one who's going to decide which best meets your needs, okay? So, I'm going to end our discussion on social media. We just barely, barely, barely touched the tip of the iceberg here, but I just wanted to throw it out. We could certainly have a whole session sometime on Facebook. We could certainly have a whole session on YouTube. I'm liking the idea of a session on listserv, but just tonight was just to throw it out there, to kind of wet your whistle, to see if people were interested.

Again, I'm going to encourage people not to be intimidated by the technology. Don't be discouraged if things aren't accessible, because everything that I was checking out ... Facebook has done a really good job, and all of the others like LinkedIn, Twitter. Twitter, someone said, was very accessible, and we'll put some links on the show notes. So, check it out. If you're not ready to jump in yet, just check it out and see what it's all about.

So, with that, I'm going to turn it over to you, Jennifer. You're going to talk a little bit tonight about ways to connect with friends and family.

Jennifer O: Okay. Well, thanks, Debbie. Obviously, we've talked about connecting with friends and family from one sense of the word connecting, and that's just keeping in touch, right? If they live far away, keeping in touch, finding out what's going on with them and everything like that, social media and all the different platforms are a great way to do that, but I want to talk a little bit too about just building stronger connections with your family, strengthening those interpersonal connections with folks. We've also talked about how connecting with others who are visually impaired is such a great resource because you can get tips and tricks and talk with people who have a real understanding of what you're going through.

Ideally, your family, as Debbie mentioned earlier too, is also a great support. They can provide encouragement. They can help you out if you need a ride to the grocery store or the doctor's office or reading mail. They're there for you to talk to if you have a bad day, or just to share when you're excited because things are going really well. Hopefully you just enjoy hanging out with them too, but sometimes, when a person becomes visually impaired, especially in the beginning, some family members may not always know quite what to do or how to act, how much to help. You may help too much. They may not help when you feel you really need it. How can you make people feel more comfortable with your visual impairment and interacting with you?

So, I'm just going to touch on some few points, and then we'll kind of open it up and get your thoughts and feedback too. I wanted to start out by saying, it's important to know that, just as each of us who have gone through losing vision go through an adjustment process, your family members also go through an adjustment process. So, they also grieve your loss of vision. They experience those same feelings you might have had, feelings like sadness and fear about losing more vision, or how you're going to be able to take care of yourself. They may wonder about changing roles within the family, and things like that. It can take time for them to adjust as well, so that's just something to think about.

I know when folks go through the process of losing vision and adjusting to it themselves, they sometimes take out their anger and frustration on the people closest to them. That's often times family members too, so we want to make sure that we're talking with family and talking about how our vision loss makes us feel. I say "we" because I'm blind myself, so ... I know growing up, in our family, I have two sisters that are blind also, but we never talked about it as a family. It was just part of our family, but we never really discussed it, and I think as folks lose vision, it's really helpful to share how you're feeling. Are you scared? Are you concerned about certain situations, because your family may not understand why you don't want to participate in an activity, or why you may be nervous, or why you may be angry and just took it out on them. So, talking with folks is really important.

It's also important to listen to their concerns too, that ... Whenever you're building any kind of relationship, it's good to have it be a two-sided relationship, not just a one-sided relationship. So, hear their concerns and talk about them because some of them may be just things that they're thinking about, all the what ifs. You might have some really good explanations or information to help put them at ease and make them feel more comfortable.

Then, the next one, and then we'll take a break after this one, and get some feedback from Debbie and all of you, but talk with your friends and family to let them know the daily activities that you feel comfortable doing by yourself, the ones that you may need a little bit of help with, and the ones that you might need more help with. A lot of times, it would be really nice if they could just read my mind and know what I need help with, and jump in, and give just the right amount of help when I want it, and how I want it, but they don't read my mind, unfortunately. So, it's really helpful for me to explain to them.

Sometimes, when they over-help, or there's a situation where maybe I'm not as comfortable, it's really important to use what we call "I" statements. So, instead of saying things like, "You need to do this. You need to help me more. You need to... " It's much better if you can always put things in terms of "I". "I felt this way when... " "This made me feel... " Debbie, I'm going to pass the ball to you right now to add to this, to see if you have any additional comments just on the kind of ... how using "I" statements help, or the benefits of just talking to your family about the stuff I've mentioned so far.

Debbie W: Thanks, Jennifer. Well, let me say one thing, and this is what came to mind when you were talking about family, is that some people may not have a family that they're close to. Maybe growing up, it wasn't a good environment. So, sometimes, we don't want people to feel isolated, that this topic doesn't pertain to them, because family, in my mind, is the family you create. Sometimes it's not your birth family. Sometimes it could be a very close social network, and that's your family. So, I always like to throw that in, so people who don't have those experiences of family don't feel isolated when we talk about this topic.

The other thing that came to mind when you were talking, Jennifer, is that we have to know our families, right? If we are new to vision loss, or new to changes, and we never were able to talk about, to our family, about other things, what makes us think that because we now have this diagnosis, that we can suddenly talk to them about everything? What's the matter that they don't? We can't magically make those relationships happen. Relationships, I hate to tell you people, relationships take work. If you're married, you know that, right? So, things just don't magically happen because you need them to or you want them to.

Personally, I'll share. I've been going through a cancer diagnosis, and I have to really be honest and open with my family about what I need. "This is what I need. This is how I need you to help me," and I'm very honest when I need to tell them to back off. “Just back off. I'm okay. You're being too protective." I kind of see a parallel there, and I just think, sometimes, we have to know our families.

Debbie W: So, let's open up the discussion for people who have questions or comments. Star nine is telephone. Alt plus Y is Windows. Option plus Y is Mac. Barb and Brenda, I'd be curious to hear your take on family since you both are visually impaired. Helen, you have your hand up. Go ahead.

Helen: Yeah, I'm one of the ones that's completely alone in the world. That's been a problem because, when I go out in public, the only ones that seem to be ... I'm blind, and I'm partially deaf, and I'm in a wheelchair. The only ones that seem to come toward me ... I can't make eye contact. I can't do the normal things you would do in a public setting, and I'm finding that only piranhas are showing up when I show up anywhere. So, I'm having trouble finding safe ways to meet safe people with common interests, because I am a musician. So, first and foremost, I'd like to find other handicap or disabled musicians. I did try, and for a little while, I was part of a Meetup group, and that's how I did, but until I became more profoundly disabled.

So, how do I do this completely alone? I have no one to drive for me, no one to, how you say, ride shotgun, and help me out anywhere I go, for anything I'm doing. I'm still trying to get into the system to get help. So, the listserv is a good idea, but again, all that stuff is so overwhelming. I guess I do know what I would like to do: find other musicians, but I'm not having much luck. How else would I go about doing this, being completely alone, and female, and in a very vulnerable spot?

Debbie W: Okay, Helen. Well, I hope you're not feeling too alone. You have our group now. I hope that we've been able to be helpful for you in some ways. I know people have reached out to you here. So, I hope you're not feeling too alone. The other thing is, it's not an easy journey for anyone. So, you take it one step at a time, and I hear that's what you're doing, and I applaud you for that. Take one step at a time. My philosophy is, the more you reach out, the more you're going to find. It's hard work to reach out for resources. It's not a magical thing. You'll find the right connections in the right time. That's my belief.

I also wanted to comment. Cyrille had put in the chat room. I think he's from a different country, and he was sharing with us that he did use Messenger and Facebook as a way to connect to people in his country, he's saying. I don't know what country you're from, with saying that social media is very important.

Jennifer O: Just to go back to that for a minute, that is another really important aspect of social media in terms of connecting people around the globe. I think more so than ever, folks that live outside of the US can contact a variety of folks from all over the world, so thank you for sharing that. In terms of, Helen, and in terms of your questions, I agree with Debbie. I know that it often doesn't happen as quickly as we'd like, and it definitely is a journey, but continue to come to this group. We're here for you, and I think the listservs have a lot of potential for you. It's just a matter of kind of starting slow and starting with one or two. I think you've got an idea of what you're interested in, so I think kind of pinpointing that is going to help. It'll happen little bits at a time. It might not be this one grand reveal of things, but little by little, I think you're going to find resources that will help, and make things a lot more easier, a lot more enjoyable, give you the information you're looking for.

Debbie W: What are other people thinking about connecting with family? Has it been hard to talk about your vision loss? Has it been hard to get the support you need? What about your friends? I know sometimes people have told me they've lost friends because of their visual impairment. People don't know how to talk to them anymore. So, instead of being honest about it, they kind of just vanish. How do people deal with that? A sense that everybody has experienced that, are you comfortable sharing your experiences with the group here? Okay, Jody, I have your hand up. I'm going to unmute you. Go ahead, Jody.

Jody: Yeah. Well, I wanted to make a quick comment to Helen that the National Federation of the Blind has a musician’s listservs you might interested in joining. Also, if she contacts the state affiliate, she might find a local chapter that she can join and might find some musicians that way. I think- I was going to comment. One family dynamic that I thought was kind of interesting is that my son grew up with me as a blind mother, and he always just ... He watched me doing things and being independent and taking care of the house and all the family responsibilities that I did. Then he got married, and I don't know if it's his wife's influence or what, but now, all of a sudden, he doesn't think I can do anything.

Debbie W: Oh. Okay. Okay.

Jody: It's just really funny. It's like, "Mom, don't do that. Mom, don't... " I go, "Why not?" "Well, you can't see," and I'm like, "I know that, and you've known that your whole life."

Debbie W: Can you laugh with him about it? I mean, is that something that you can say, "Well, how do you think you got raised the way you did?" I mean, is that-

Jody: Well, it's kind of a frustrating story because I actually haven't spoken to him in three years.

Debbie W: Okay.

Jody: Again, I think it has to do with his marriage. Now, and another funny thing is there's a lady in our local support group, and she was telling me the same story about her son, and that she's had the same problem, but... Interestingly enough, her son and my son were best friends when they were in high school, so ...

Debbie W: Interesting.

Jennifer O: Oh wow. That's funny.

Debbie W: Interesting.

Jennifer O: [crosstalk].

Jody: We talked to each other for about an hour before we realized that we were a lot closer than we thought we were, but yeah. So, I think family dynamics can be influenced by other dynamics, too, which I think that's kind of interesting.

Debbie W: Right. Right, and I think the point ... What I'm pulling out, Jody, which is a good point, sometimes it has nothing to do with you being blind and visually impaired.

Jody: Exactly, yeah.

Debbie W: You know?

Jennifer O: That's right. That's right.

Debbie W: Yeah, and so, we might want ... Somebody might say, "It's because of this," but sometimes it's just the dynamics. It's, when people get married, you have an in-law that has a heavy influence. I mean, I've seen that in my own personal family where people don't come to family events because the spouse is not comfortable and has a heavy influence. So, yeah, so it's not ... We can't always point to the visual impairment. So, that's a wonderful point, Jody.

Jennifer O: A very good point, yes.

Debbie W: I'm sorry, Jody.

Jody: Oh, I'm sorry.

Debbie W: Go ahead.

Jody: Oh no, I was just going to say that's true in other ways too. I took Tai Chi for all ... I'm a martial artist. I love the martial arts, and I have taken Tai Chi for a while with a woman, and she was an excellent instructor. Then she discontinued teaching, and I went to another group, and the new instructor, she couldn't deal with me at all. She's like, "Well, I don't see how anybody that's blind can learn Tai Chi," and I'm like, "Yeah, well, okay. How about the other instructor?" People are so quick to say, "Oh, well, I have this problem because I'm blind," but it could actually be the other person's problem. Or, what I like to say is, "An insult is only given if it's received." If that other person isn't capable of dealing with your blindness, that's not your problem. It's theirs.

Debbie W: Right, and I love that. I love that point, Jody. The thing about that is, at that point, you have to decide, do I want to take this further? Do I want to be the one that's going to educate this Tai Chi instructor? Do I want to just lay it on the line and say, "You need to. I'm here. Figure it out." What role are you going to take in that relationship? Is it worth to you to pursue that, or do you want to back off? So, those are all kind of-

Jody: As it turned out, she was a terrible instructor, so I wouldn't ... I didn't even want to try it.

Jennifer O: So, it worked out in the end. Yeah, yeah.

Jody: Yeah.

Debbie W: Those are the conversations you have in your head when situations arise. Is it worth pursuing? Is it something I want to put my time and energy into? Do I want to walk away for a while and come back to it as I sort out my own issues? Do I want to confront the person? Jennifer's point about using "I" language is very important when you're going to confront somebody. "I feel that you're not listening to me. I feel that we're not on the same playing field. I'm wondering how I can help you understand my visual impairment," instead of, "You're not doing what you need to do to help me." So, those "I" statements are the big difference between being assertive, and that's the word that I point to, is being assertive. Brenda, I'm going to unmute you. Go ahead.

Brenda: Okay. Back to the listservs, I was able to post my burning question, the one that just kept going over and over and over in my mind. So, I found those very helpful. The term Barbara was looking for in the listservs, it's called a digest.

You would think that with four of us having Usher syndrome in our family, that would cause us to bond together, but that's not really the truth. I think because each of us went through different phases of our eye problems at different times, it became more isolating. So, two things. One, you will learn patience. You’ll have no shortage. You will become much more patient than you've ever been before, but number two, don't quit. Just keep persevering. Just don't quit. So, that's my comment.

Debbie W: Brenda, I like that when people say, "Don't quit." How do you best do that? Do you have any advice about that? If someone says, "Don't quit," what are some things that help you, that keep you persevering?

Brenda: There are days, there are times when I just want to quit, and I'll just ... That's it. I'm just done for today. Go to bed, and when I get up in the morning, it's a brand-new day. I'll start all over, or I'll look for a new angle, or I'll look for a new person. Or, I'll get on the internet and research, and that will give me new ideas. Or I'll talk to someone, and sometimes they will point out something. "Oh, I didn't even think about that."

Debbie W: Okay. Great. I like those. All of those tips are excellent. I think they're all excellent. I like the point where you say, "It's okay that I have a bad day."

Brenda: Right.

Debbie W: Yeah. It is okay. I call mine "pity party days", and I just stay in my pajamas and curl up in the recliner with my cat on my lap, and we read a book, and I have a little pity party. Now, if you have a pity party for three days, I worry about you.

Brenda: Right.

Jennifer O: I just wanted to say, it's helpful to talk with your friends and family about your vision, and what you're able to see and not see, and why you can see some things better on some days and not others, because they don't, a lot of times, don't understand. So, and they may have misconceptions about what we can see and what we can't, and why it might be more difficult in some situations, so ... but I think we've got some hands raised.

Debbie W: Okay. Helen, I'm going to unmute you. Go ahead, Helen.

Helen: Yeah. The one thing I figured out going through my journey is there's no such thing as "normal". I wish people would get over that concept because I've had to change my new normal over and over and over. Every time I've appeared, and I heard some of the others talking about this, other people's fears get imposed upon us, or our family and friends saying, "Well, they can't do that. They're blind," or, "They can't use a wheelchair and be blind." And that's been a problem. We have to really work hard. Again, you have your bad days, and ... Well, I'm there with you. Curl up and have a pity party, and then try again tomorrow. It's just getting rid of this thing about what's normal and what is not normal, because a lot of times, I'm even held to a higher standard of normal, being blind or whatever. So, some of the things that I would make-

Debbie W: Absolutely.

Helen: Even a simple mistake that I would make as a sighted ambulatory person, I'm held to a higher standard, but this concept of normal has got to go, because everybody's got a different normal. That's all I had to say on the subject.

Debbie W: Yeah. I'll be-

Jennifer O: Sometimes, it feels like instead of three strikes and you're out, it's one strike and you're out, right?

Helen: Yeah, yeah.

Jennifer O: Yeah.

Debbie W: Yeah. I'll be 60 years old next year, but I've never met a-

Helen: So, and just to give a really quick example-

Debbie W: I've never met a normal person yet. I don't know what normal is, so ... Thank you, Helen.

Helen: No, and it is whatever we're given at the moment. Yeah.

Debbie W: Right.

Helen: Yeah.

Debbie W: Okay.

Jennifer O: Thank you.

Debbie W: Okay, Judy. Okay, Judy, I'm going to call on you. Judy, I'm unmuting you. Go ahead, Judy.

Judy: Yeah. Yeah, I was just going to add, when we were talking about when we're having a bad day, I know for me, if I'm getting frustrated, it's like, "Okay, just walk away and do something you know you can easily do." It's like, "Yeah, my dishes. It's time to do my dishes," or, "Hey, I'm just going to watch something that's described on television because I don't have problems with that." So, sometimes it's just, "Okay, switch to something that you know you can do, and then catch your breath and go back and try again with whatever was frustrating you."

Debbie W: Great. Right. That's a wonderful suggestion.

Jennifer O: That's great. Thanks, Judy. Good suggestions.

Debbie W: Yeah. That'd be a good ... I'm getting all kinds of ideas for topics here. That'd be a good topic too, Jennifer, is what do you do ... Resources for when you have a bad day. So, we could have some fun with that one.

Jennifer O: Absolutely. Absolutely.

Debbie W: Okay. So, now I have Jody. Jody, I'm unmuting you.

Jody: Well, I'm just smiling because I love that “normal” comment, because I remember once, somebody said, "Oh, I thought you were normal." I said, "I am normal. I just can't see."

Debbie W: Oh.

Jody: Yeah.

Debbie W: Yeah. When you said that comment, I thought, "How rude." Sometimes we just have to say, some people are just rude and ignorant, bottom line, and there's ... No matter how much education-

Jody: Yeah, yeah, that too.

Debbie W: Yeah. So, yeah. Thanks, Jody.

Jennifer O: But you had a good comeback. I liked your comeback, though. Yeah.

Debbie W: That is a good idea.

Jennifer O: Go ahead, Debbie.

Debbie W: Yeah, well, I'm thinking that that's something people should sit and spend some time. "What can my comebacks be? What could I say to somebody when they say something rude or ignorant?"

Jody: Oh, I got a whole bunch of them. Yeah, I got a whole bunch of them.

Debbie W: Well, some time when we have more time, I hope you-

Jody: You also have to have a sense of humor.

Debbie W: Sense of humor is very important, right, Jody?

Jody: Yeah, you have to have a sense of humor. I remember when somebody ... Yeah, somebody cut me off once, and somebody ran out in front of me. They said, "Oh, I'm sorry. I didn't see you." I said, "It's okay. I didn't see you either."

Debbie W: Right. Exactly.

Jennifer O: That's great. That's great.

Debbie W: Exactly. Yeah, a good sense of humor can get us through-

Jody: Anyway-

Debbie W: ... some really rough times. Thank you. That triggers something in Barb. She raised her hand. I'm going to call on her.

Barb: Yeah. That "normal" kind of reminded of when people say, "But you don't look blind." What is blind supposed to look like?

Jennifer O: That's right. Absolutely.

Barb: Okay. I also had a comment for Helen. Helen said that she's waiting for blind services to get back with her. They will, once they get a hold of you, they will give you some resources in your location where you might be able to get transportation, or to find people who might be able to help you. In the meantime, you might want to reach out to your local area's Chamber of Commerce and ask them if they have an organization or something, people who volunteer to help disabled people.

Debbie W: That's a good point. That's a good point.

Barb: So, that's what I thought.

Debbie W: Sometimes, the Lion’s Club, if your community has Lion’s Club, that's a good resource. Sometimes, the local senior center, if you call the senior center. I don't know ages of people on this group, but sometimes they have transportation. So, look outside the box for resources that don't just apply to your being visually impaired. Look for other resources as well.

We're nearing our time to end tonight. I wonder if anybody has any final comments. Again, these discussion groups aren't to thoroughly digest a topic. We've just hit the tip of the iceberg, and in some small ways, I think it's sparked some ideas for further discussion. It helps us get to know each other and share with each other, so I appreciate everybody attending tonight. Does anybody have any final comments before we close for this evening?

Jennifer O: I just wanted to say, whether it's friends, whether it's family, it's important to find all those ways to stay connected. If it's other people that are visually impaired, find those resources to help you to connected in terms of just strengthening those relationships. We say this a lot. You'll hear Debbie say the words "self-advocate" and "self-advocacy". It really does take kind of putting yourself out there and being the one to kind of bring up the discussions with folks, to let them know about your vision, about the kind of help you need, about what you're looking for, and the resources and information you need. So, just continue to be a good self-advocate, and you will make those connections, and deepen those relationships.

Debbie W: Thank you, Jennifer. It's nice to have you as a cohost. I don't mean to put you on the spot, but you got to get used to my style, right?

Jennifer O: I'm all in.

Also, check out our podcast. We were talking about chilling out, and how to take care of yourself. Recently, I did a mindfulness podcast for Hadley with Tiffany Guske. So, that is now on our website, if you're interested in that topic. So, make sure that you check out all the exciting new things that are going on at Hadley. If you're on Facebook, like us on Facebook so you get our updates.

So, we'll be back next month. Jennifer and I thought we would do some holiday resources. So, if you have anything specific to the holidays, email us and let us know. We're going to do resources for gift giving, resources for getting along with your family at the holidays, all kinds of fun things. So, if you have anything you want to share about that, please do email either one of us.

So, great to connect again tonight, and we'll keep the discussion going. Thank you, everybody, for your comments. Thank you for listening, and thank you, Jennifer, for your knowledge that you shared tonight. See y'all next month.