Low Vision Focus Presents

Low Vision Focus Presents Vision Loss Support Groups Part 1

Seminars@Hadley

Presented by Polly Abbott

Moderated by Ed Haines

April 21, 2016

Ed Haines Let me formally welcome you to Seminars@Hadley. My name is Ed Haines. I’m an instructor at Hadley and a member of the Seminars@Hadley team. Low Vision Focus @ Hadley presents today’s seminar titled Vision Loss Support Groups Part 1. Starting and maintaining a vision loss support group can be an enriching and, certainly, rewarding experience, but good preparation and planning are essential elements for future support group leaders to be effective. So, myself, and support group leader expert, Polly Abbott, CVRT, OMS and Director of Rehabilitation Services at Second Sense, will be discussing the elements that make up a successful group. This will be Part 1 of a two part series, and in this first

Low Vision Focus Presents Vision Loss Support Groups Part 1 session, it is my pleasure to begin this presentation by turning the mic over to Polly Abbott.

Polly Abbott Good morning, everybody. Thank you for joining us. I have been thinking a lot about support groups over the last couple of years because my work at Second Sense involves providing educational seminars to groups that are out in the community, and I have met a lot of people, a lot of different kinds of groups and group leaders. A lot of the people out in the community running groups are not people with vision loss. They are librarians and social workers and nurses. There are many people who do have vision loss who are running support groups as well.

Over time, I have come to think a lot about what makes a good support group. When I go out to a group, I can tell if it’s a good group by the way I see people listen to each other, and see if they’re open to sharing. I look at the planning with the group leaders often and see that the meetings are occurring regularly, because one thing that’s important to groups is to have people know that they can depend on the group to be there for them when they need it. Good groups also have a sense of, shall I say, movement to them. Within the meetings themselves, there is an ebb and flow to what is happening. And also, over time, you can see with good groups and good group leaders, that they’re planning allows people to move

Low Vision Focus Presents Vision Loss Support Groups Part 1 through the different stages of adjustment to vision loss. They often, over time, will gain more confidence, and they’ll gain more understanding of what is going on with them, and also, through the education that’s provided, they gain more independence. Largely, this is due to the tone that is set by the leader. A good group leader plans ahead. A good group leader has an interest in the sensitivity to interacting with people. You don’t have to be an expert on vision loss issues to be a good vision loss support group leader. You can learn along with the group. I think that that is really the key.

All right Ed, I think that’s – unless there’s any comments, that was what I – just some general comments I wanted to share on support groups and leading them.

Ed Haines Okay, I think we’ll go ahead and perhaps stop in a little while for questions. Polly thanks very much. You pretty much encapsulated a lot of what I was going to say as well. I guess what I wanted to address first are some important questions you need to ask before you start a support group. If you can answer these questions honestly, you’ll have a much better chance of success.

The first question you really need to ask before starting a support group is, is there a need for one? If you’re not a professional, or someone who’s starting a support group

Low Vision Focus Presents Vision Loss Support Groups Part 1 for other reasons other than having a vision impairment, you likely have a vision impairment, and it’s likely that you feel you need a support group environment to help you adjust. You may have been to a training center at a rehab center and you miss that interaction with peers. You may have belonged to another support group with another focus in the past and you found that it’s been really helpful. You may have read about support groups online, or a friend may have suggested that you start one. There are a lot of reasons for starting a support group, and the fact that you have low vision and you may need a support group is just fine. There’s nothing wrong with that.

But your motivation also needs to be bigger than your own personal needs. You need to take care on some level about meeting the needs of others. It’s important that it’s more of a holistic approach to being motivated to starting a support group. It’s also important that your primary motivation is not to instruct others. Sometimes folks think that their personal experiences with low vision can help others, and that’s, of course, true, and that’s one of the benefits of a support group. But, if you’re thinking of starting a group, you need to remember that your personal experience isn’t the answer for everyone, and, in fact, other people may have personal experiences that can be the answer for you. If you decide to start a group because you feel people need to benefit from your prior experience, you might find you don’t have much of an audience.

Low Vision Focus Presents Vision Loss Support Groups Part 1 If you’ve asked yourself that question, is there really a need out there, the way to determine that is to reach out. You can talk to other people with low vision to find out if they’re interested. You can find out, definitely, if there are any groups that already exist. You can certainly ask other professionals or people that have relationships with folks with low vision to find out if other people have expressed a need. Those individuals or organizations can be eye practices, eye doctors, area agencies on aging, centers for independent living, state services for the blind and visually impaired, the National Library Service branches or local libraries, or any local not-for-profit agency serving people with low vision. You can reach out to these entities and find out if there are others that have expressed an interest in a support group. The great thing about establishing a relationship with these entities is that they might be willing at some point to help you publicize your group as well.

If you’ve asked that first question, is there really a need, you need to ask yourself some other questions also, and these are really important because you have to answer them honestly. The first is, do you have the time necessary to facilitate a group, because there’s going to be a lot of time with regard to planning and publicizing meetings, you’ll need to have time to coordinate special events, talk with individual members, perhaps, who call with problems, organize transportation, maintain, possibly, a Facebook page, contact community resources to help

Low Vision Focus Presents Vision Loss Support Groups Part 1 publicize your meetings, and even some mundane things like shopping for refreshments, negotiating and scheduling meeting spaces, etc. So, you really need to have the time, and you have to have a flexible schedule. That’s the first question you need to ask yourself, and it’s an important one.

Secondly, you need to ask yourself if you’re committed to attending all the meetings, unless you’re obviously deathly ill. But you need to be able to attend the meetings even when you’re having a bad day. Now if you’re new to vision loss, sometimes taking on the decision of being a facilitator is not the best idea. Maybe vision loss has been a little too recent for you to take on added responsibility. Sometimes, there’s a natural inclination to do something after experiencing a loss, but starting a support group may not necessarily be appropriate at that time. You need to be able to show up even when you’re having difficulty with adjustment and having a bad day. As a facilitator you have a responsibility.

Now, also, you need to ask yourself if you feel comfortable speaking in front of a group. Few of us, and I can tell you myself included, are natural public speakers. Being a facilitator isn’t like giving a performance, but you should be able to present the group’s agenda in a clear and a comprehensive manner, and that takes – sometimes for folks – that takes practice. You need to know that that’s a

Low Vision Focus Presents Vision Loss Support Groups Part 1 skill that, if you don’t have, you’ll have to acquire feeling comfortable speaking in front of a group.

Another question you need to ask yourself – and this is another skill that sometimes folks don’t have right away, but they certainly can acquire – is being able to be assertive enough to keep meetings on track. All of you know that every type of group has probably one or two members that are more verbal than the others, and there’s nothing wrong with that, that’s harmless, but, if it’s uncontrolled, it can actually ruin the quality of a meeting. So you’ll need to practice your people skills. You need to get used to interacting with a multiplicity of personalities. Most importantly, you need to be assertive enough to make sure that the quiet members of the group, the more passive members, have an opportunity to share their ideas and feelings. Being assertive is not something that comes normally if we haven’t run groups before, but it’s something that’s really important.

You also need to ask yourself if you are able to maintain a positive, encouraging, and hopeful attitude. Remember, facilitating a group really is not about you, and members look to you to set the tone of the meeting. Also, are you able to make a long-term commitment? We all know that it takes time for people to build trust with one another, time doing things, time sharing experiences, and you have to be ready to commit to that amount of time. If you think

Low Vision Focus Presents Vision Loss Support Groups Part 1 that you just want to start a group for six months or so, that’s probably not appropriate. The adjustment takes a different amount of time for every different person and you need to have the commitment to stay with it.

And, finally, ask yourself if you’re a good listener. As I mentioned before, you’re acting as an example to the group members, and that’s true in this regard as well. Being a good listener, that means being an active listener, someone who’s obviously listening and understanding what’s being said, using body language, eye contact, encouraging statements, repeating – this is very important – being able to repeat or rephrase the speaker’s last statement to let him or her know you understand.

All these things play a large part in whether you’re gonna be a good facilitator and whether it’s a good idea for you to start this or not. I’ll repeat them again. You need to make sure there’s a need other than your own for a group. You need to have time and a flexible schedule. You need to be committed to attending all the meetings, even when you’re having a bad day. You’ll need to acquire the skill to feel comfortable speaking in front of a group. You’ll need to be assertive to keep the meetings on track. You need to maintain a positive, encouraging, and hopeful attitude, make a long-term commitment, and be a good listener.

Low Vision Focus Presents Vision Loss Support Groups Part 1 All right, those are the kinds of questions you need to ask yourself. I’m going to release the mic and see if there’s any questions at this point, or if Polly wants to make any comments.

Polly Abbott Okay, no comments popped up right away, so I just want to share with you a little true story that demonstrates what Ed has been talking about. I know this lady, a few years ago she was in her late 70’s, and she came to receive services and attend a couple of my workshops. At that time, she was new to vision loss. She had also recently had a major personal loss in her life, but she was talking about starting a support group. I asked some of those questions to her that Ed was talking about, and she kept the goal of running a support group in her mind as she took care of herself and gained some skills for independence. And all the while, her motivation was to be able to read and write using her video magnifier. She learned how to use her computer a bit better and send email. She got some mobility training so that she felt a little more confidant moving around. She put all of those skills to use about, maybe, two years later, and started running a support group. All of the skills that she learned make her a very effective group leader. The interesting thing is, she still continues to take care of herself and attends a vision loss support group meeting in a town that

Low Vision Focus Presents Vision Loss Support Groups Part 1 is near here, in addition to running her own group. I found this very inspirational.

I’m just gonna pause for a moment and see if there’s any questions or comments.

Ed Haines Polly, we have a really good question in the text box from Ann, and this is probably – I will let you handle this. This is a good question. She says, “I’ve been assisting in running a support group for over a year. How do you handle members who are horribly negative?” The person she’s talking about is very vocal and just complains about everything.

Polly Abbott I think there are two things to think about when you’ve got someone like this in your group. Is she complaining about everything because she is depressed about her vision loss, or are there other things in her – okay, yes. So the answer is yes. So a two-fold approach. Number one, take the person aside – I’m sure you already have – and see if you can help her on an individual level, see if you can address any needs that she has that might make her feel better. Usually people are negative because they don’t have skills that help them be more independent and feel more in control of her life. You’ve also go to address the effect that her negative comments are having on the group

Low Vision Focus Presents Vision Loss Support Groups Part 1 as a whole. You might have to do some group facilitation to make sure that she is not the first person to speak or the last person to speak, and you might have to be a little insistent about stopping her comments before they go on too long, or trying to respond back to her in some way that’s positive to turn her around. That is difficult to deal with.

Ed, do you have anything to add to that before I go on?

Ed Haines Not really, except that I have been in a group where we had a member like that, and, finally, ultimately, that member was asked to leave. It was a very sad situation, but there just seemed to be nothing that could be done, and the rest of the group was ready to just disband because the meetings were so unpleasant. If you get to the point where that member is jeopardizing everyone else’s adjustment and nothing seems to work, and I think as a last resort, you might want to ask the member to bring someone with them that can – if they have an advocate or a family member – that maybe can help keep them on track. But I was in a group where absolutely nothing, nothing worked and, eventually, that member was asked to leave. It was very sad.

Low Vision Focus Presents Vision Loss Support Groups Part 1 Polly Abbott I think, too, as a group leader, you might need a few resources in your pocket in case someone needs a referral to more professional counseling. As we know, vision loss doesn’t change who you are. If you’re a negative person before, you’re still gonna be, chances are, a negative person with vision loss as well. Sometimes a referral for extra help might be of assistance.

Ed Haines All right, if there’s no other questions. We have one about handling a dominator in a group. I talked about assertiveness. I think Polly, toward the end of this presentation, is going to talk about things to keep in mind when interacting with group members. So perhaps she can address that then, if that’s okay, so we can keep moving along. Go ahead Polly.

Polly Abbott Okay. Yes, we’ll talk a little bit more about handling different personalities in the group later on in the seminar. And in Part 2 of Vision Loss Support Groups, we get a little bit more into it as well.

Now we’re going to talk about some nuts and bolts of things to consider when you have asked yourself those hard questions and you say yes to them and, yes, you’re going to start the support group. The first thing to think

Low Vision Focus Presents Vision Loss Support Groups Part 1 about is location. Usually, this is not a terribly difficult thing to do. If you live in a residential facility, usually there’s gonna be a room available that the staff on site can help you locate. If you live in the community, there are often lots of community locations that are gonna be willing to give you space for a small charge or even for free. Think about churches, libraries, senior centers, schools, non-profit agencies. Any agency that helps other people might be willing to give you some space.

When you are considering the room itself, is it private? In a good support group, you’re gonna have moments where people will be sharing very personal experiences, possibly, so you want to make sure that you can shut a door and block out the rest of the world. Also, is the room quiet during the time which you intend to have your meeting? I specifically want to mention this point because I went to a support group meeting who met at a community center, and everything about the room was perfect except that next door, during their meeting time, was the monthly bingo game, and it was the most difficult thing in the world to be sharing information and personal comments with people calling out a bingo game in the next room. It’s not just your room; it could be the room next to you that you’ve also got to ask about.

Then you want to think about some things to do with vision loss and, possibly, other disabilities. How is the lighting in

Low Vision Focus Presents Vision Loss Support Groups Part 1 the room? Is it possible to have the group sitting with their back to windows so that they’re not experiencing so much glare? Are there blinds or curtains that you can use to adjust the lighting? Are the washrooms not too far away and are they accessible? People with vision loss may have other needs in addition to that that you might not expect, so best to get the most accessible location that you can. Included in that, of course, is hearing loss. Do you have the opportunity to turn on a public address system so that you can use a microphone so that everyone can hear?

And, lastly, the room setup. Do you have any flexibility in this? It’s really great if you can have tables or chairs for some things. If you’re trying to get group members to listen to each other, having everyone sitting in a circle or around one table can really help with that. But, also, if you’re having speaker and want to discourage conversation while the speaker is speaking, sometimes a more auditorium style layout could be better.

When you’re thinking about the time of day and week for the meeting, you want to think, first of all, about who your group members are and when they are most likely to be available during the day. I run this group for people with retinitis pigmentosa, which is a disease that really starts to impact people during the college or adult years, so most of them are working. As a result of that, I find I get the most

Low Vision Focus Presents Vision Loss Support Groups Part 1 people turning out for meetings when I have it on a Saturday morning because many of the group members are still working. If you are working with people who have age-related macular degeneration, you might want to pick a weekday because, if they’re older, they might be away for long weekends seeing grandchildren or seeing their family members who might be younger and still working. A weekend time can also be good if you’re looking for someone who is depending on family for rides; evenings or weekends can work for that. You want to think about who’s coming and what time of day, and also what day of the week is gonna work best for the majority of people’s schedules.

Also, how long do you think the meeting should be? I can tell you, based on about the 50 or so groups I’ve been to, most groups are about 1 ½ - 2 hours long. This is mostly for groups that meet in the community. You want to have a meeting that is long enough that people consider it worth their time to make the journey, but not so long that it starts to become difficult as a support group leader to fill up the time. If you are meeting in a residential facility where most of the people are already living in the building, then you can think about shortening the time, depending on what people like. But usually an hour and a half is average. You want to have a little bit of time for people to socialize, but you also want to have enough time for conversation or education dedicated to talking about vision loss.

Another thing to think about – and it might seem silly at first, but it can become a real issue in some groups – is the question of refreshments. Most people like to offer refreshments because it enhances people’s social interaction, and it makes them feel welcome. But, as a group leader, you really want to think about what is the long-term cost of this, and effort? It might seem like a good idea to have coffee and cookies, which you need cups, plates, napkins, creamer, sugar, all this other stuff, but who’s gonna pay for that? How much do you have to consider people who might have allergies, with diabetes, or nut allergies?

And also, if people are visually impaired, often you want to pick stuff that’s finger food and not too messy to eat. It’s usually easiest for everyone if you’re serving something that is not too crumbly or not too messy. Also, are your group members going to be able to serve themselves, or are you gonna need to have volunteer helpers? Sometimes people in the group like to help other group members get their snacks for them. You also have to consider things like, does the room you’re meeting in have facilities to make coffee or wash the dishes? What if somebody spills something? Do you have access to cleaning supplies? There are lots of things related to refreshments that you will want to think about and plan

Low Vision Focus Presents Vision Loss Support Groups Part 1 carefully for before you decide to make that a part of your meeting.

And, lastly, thinking about the meetings themselves, you want to think about things related to the content, you can say. For example, are you going to welcome family and friends to be a part of the meeting? Normally, I say this is a good thing because oftentimes your group members are not going to be able to get there unless they have the assistance of family or friends. It’s also helpful to the person with vision loss to have their loved ones hear the comments and questions that other people with vision loss are asking. It’s very educational for everyone, so you might want to consider welcoming people related to those who have vision loss.

Thinking about the content of each meeting, are you going to keep the discussion strictly on topics related to vision loss, or are you open to having anything of interest to the group that’s meeting together? I see this a lot where most group leaders who have community groups, usually for seniors with age-related vision loss, they’re doing lots of educational programs related to vision loss, but they’re also inviting in the local fire department, or the tax expert, to cater to the interests of the people in their group. Does your group want to engage in advocacy? You can choose to have a variety of things going on in your meetings, or, sequentially, in a series of meetings, about education on

Low Vision Focus Presents Vision Loss Support Groups Part 1 vision loss, advocacy issues in the community. You might want to consider planning purely social or recreational outings or activities. So think about how you want your group to be, because, as we know from listening to what Ed was saying, you’re gonna be with people for quite a while and they’re gonna be with you too.

I think I’ll turn the mic back over to Ed now.

Ed Haines We have a couple questions that have come up on the text box. Thank you, Polly. The first one is from Ann again, and this is another good question. She’s running out of topics after 18 months, and the group is dumping the responsibility for coming up with topics on the leader. I guess I have some input on that because I can do a few plugs here, and then maybe Polly, you might have some thoughts about it too. I will tell you, Ann, that in Part 2 of this presentation, we will be addressing more, specifically, things logistical, things like topics and how to find them.

Just briefly, I will say, Ann, these Seminars@Hadley are a perfect resource for topics for webinars. We have, I think, 250 seminars now on all sorts of different topics that would be perfectly appropriate for you to play for the first hour of your meeting, and that would be something that then could be a topic of discussion after listening. Also, Low Vision Focus @ Hadley, we now have audio recordings related to

Low Vision Focus Presents Vision Loss Support Groups Part 1 living with vision loss that you could listen to. They’re each about 25 minutes having to do with cooking, personal care, sighted guide, etc., and they’re instructional recordings that you could listen to as a group and then discuss as well. I’m just doing that to put in a shameless plug for our programs, but those are some easy ways to get some quick content where you don’t have to do a whole lot of work and that will do some instruction with your group. I’ll turn it over to Polly. The second part of the question is how to get group members to share responsibility for coming up with programming.

Polly Abbott 18 months, that is a long time to be running a group, and if you have never repeated a topic, it might be time to look back through your calendar and see what you did 18 months ago. Oftentimes, people will forget the material. Most groups do cycle through some of the basics of what you need to know about living independently with vision loss maybe once every year or every two years because people forget, and, as their vision changes, they’re going to need to hear that information again and they will no doubt pick up something new that’s gonna help them.

If your group members are trying to dump the responsibility for the topics on you, why not have a little conversation with the group? I would start out by asking them how much the group means to them and which

Low Vision Focus Presents Vision Loss Support Groups Part 1 topics they’ve enjoyed, and then, when you ask them, okay, would you like more topics like this, then see who might be interested in helping you and form yourself a little committee for the next year. Try to maybe cycle through with different group members coming onto the committee to give some fresh ideas. But we’re definitely gonna address finding new ideas in Part 2 of this seminar.

Ed Haines That’s terrific advice, Polly. Let me read here. We have one more question. Mary’s saying that she was thinking of starting a support group. She has five people, but one of the persons is already complaining about what we’re gonna talk about. And then Lorraine has a related question, “Can group members take turns with ideas?” I think that, absolutely, they should, especially if someone’s complaining. Perhaps it’s good to give that person an opportunity to come up with their own idea, and people could do a round-robin in terms of being responsible for programming. What do you think Polly?

Polly Abbott That’s absolutely right. I encourage all groups to have a meeting that is just about planning. Get out a calendar, brainstorm ideas, and then start plugging in those ideas for each meeting so that you can plan ahead. That way everyone has a chance to contribute their ideas, and maybe if they’re not so excited about the topic for June’s

Low Vision Focus Presents Vision Loss Support Groups Part 1 meeting, they know that, in August, their meeting is gonna come up. Yes, Ann, the more you can get members to contribute what they want to hear as topics, the more they’re gonna feel like this is a great group and that everyone’s a part of it and builds some really nice interaction and feeling and culture within the group.

Ed Haines I’m glad that these questions came up because this actually relates to what I’d like to talk about next. It’s a little more theoretical than what Polly was discussing, but I think it relates to our current discussion and the questions that people were asking.

Polly talked about the logistics of deciding where and when and how long and all those kinds of things. Once you’ve solved those problems and come up with some solutions, it’s important to remember what support groups are really all about. I’m just gonna be a little more theoretical here, but it does relate to some of these questions. In a nut shell, you and the members of your group are there for just one purpose, and that’s to adjust to vision loss. Now, that can be multi-dimensional, but that’s the main goal, to adjust to vision loss. That can happen in different ways and at different rates for each person, but there are some common fundamental elements that every member needs and every healthy

Low Vision Focus Presents Vision Loss Support Groups Part 1 group contains. It definitely relates to some of these questions.

There are three basic elements that I think need to be discussed, and that’s mutuality, reciprocity, and interdependence. These three things make up what’s sometimes called the self-help process. Low vision groups are about adjustment and adjustment needs mutuality, reciprocity, and interdependence. Let me talk about mutuality a little bit. Mutuality implies equal standing and shared characteristics for each member of the group. That means everyone’s input is equally valid. What’s even more important is that every member needs to acknowledge this as a fact, not just the facilitator. That relates to someone who’s complaining an awful lot before the group’s even started. I think it was Mary’s question.

Members have common experiences and these experiences give them a common incentive to make the group a success. But everyone needs to have equal standing. That’s where, really, a self-help group is different from a therapy group. A facilitator in a self-help group, like a low vision group, may lead, but the group really belongs to the members, and everyone is important to the success of the group, not just the facilitator. Having members dump all the responsibility on the facilitator is not necessarily making a healthy group. Every member has

Low Vision Focus Presents Vision Loss Support Groups Part 1 to have a mutual responsibility for the success of the group. That’s mutuality.

Now reciprocity, it’s not just that everyone’s input is valid, it’s also important that everyone’s help and assistance is valid. Reciprocity means that group members are expected to give help as well as receive it. It’s really essential that there’s an environment where certain individuals don’t always feel responsible for everyone else. You want members to understand that they just can’t be passive all the time. They need to move from being passive recipients of assistance to being active helpers of others. That’s what the self-help process is all about, and that’s what reciprocity is all about.

Now, people at different stages of adjustment, and at different times in their group life, may find these roles changing and evolving just according to time frame. For instance, if someone has had recent vision loss or has recently joined the group, those people, primarily, will be recipients of help, and then gradually grow, with their knowledge and their level of adjustment, into people that can help others. But it’s important to remember, though, that everyone has a role. Newcomers to a group, for instance, can, in an indirect way, be an inspiration to seasoned veterans, because newcomers can remind veterans of what it’s like to be new, and also remind veterans of just how far they’ve come in the adjustment

Low Vision Focus Presents Vision Loss Support Groups Part 1 process. So, as I said, each member has a role to play, even if it’s not initially an active one. That’s what reciprocity is all about. I know as a professional, I’m constantly surprised and inspired by individual responses to low vision. Everybody has something unique to teach.

Okay, finally, interdependence. I won’t go too far into this. It’s fairly self-explanatory, but we know our culture, especially in the states, has a very high regard for independence. We admire people that pull themselves up by their bootstraps, etc. This can sometimes play out as a response to vision loss. We just want to take care of the problem ourselves; we want to deal with it alone. Joining a group, people may be hesitant to because they feel like they’re surrendering their independence because they’re relying on others. But actually, really, the principle of interdependence means that each group member keeps their individuality, and, at the same time, they’re part of a whole. The best metaphor for this, of course, is a flock of geese flying in a V formation. Each goose is flying individually under its own effort, but it’s flying in the slipstream of the goose in front, and, therefore, expending less energy and traveling further. Everyone’s moving toward adjustment on their own pace, but they’re being assisted by everyone else in the group. That’s interdependence.

Low Vision Focus Presents Vision Loss Support Groups Part 1 That’s the three qualities a good, healthy group needs to have; mutuality, reciprocity, and interdependence. I’ll turn the mic back over to Polly.

Polly Abbott Thanks Ed. I’m gonna get back into the nuts and bolts of finding those people to create that wonderful self-help group. A lot of times people are all excited to start a group, and they make a flyer, and they start to publicize, and then nobody shows up. I wanted to give some tips that might help you attract those people and get them to your meeting. In general, you’ve got to keep in mind that the group is extremely important to you, but it may not be as high a priority to someone else, or they might just be too scared, or maybe not feeling quite ready to come. To combat that, don’t be afraid to mention it once, give them some time, and then talk about it again. No matter who you’re marketing to, remember that you’re gonna need to let them hear the information two, three, or even four times before it starts to register in their brain and becomes something that they remember. It helps if you have a group name that is easy to remember, short, hopefully gives some indication about what the group is about; for example, The Visionaries.

Make sure that your flyer is written so that someone with vision loss can read it. I think that this is the most common – I don’t want to say mistake, exactly – but a

Low Vision Focus Presents Vision Loss Support Groups Part 1 barrier, certainly, to attracting people to the group. If you have vision loss, you know how difficult it is to read, and being handed a flyer may just seem like one more piece of paper that you don’t want to deal with. But, if you’re handed a piece of paper that has the notice written in nice, large, bold, simple print, it’s gonna be a little bit more motivating to read it and see what it says. Also, think about word of mouth in addition to the flyer. If people with vision loss are not noticing that you’re advertising, then talk to whoever you can and try to spread the word about your group.

Now, all that being said, you still might have people who say, yes, maybe, not sure. They might have a reaction to the words support group, if that is what you’re calling it. A lot of people don’t have a very positive view of support groups until they experience one. It’s getting them in the door that is the challenge. You might want to call your group something that doesn’t use those words. Call it an education group, a discussion group, or simply a group, something that sounds positive, possibly fun, and certainly educational.

Once you have a flyer, and I would highly recommend that you make one, photocopy a big stack of them and carry them everywhere. Try to design your flyer so that it always is something that you can use, kind of like forever stamps. If you design a flyer that gives a specific date on

Low Vision Focus Presents Vision Loss Support Groups Part 1 it, it’s gonna expire after that date’s over. If you have a simple flyer that has your name on it, the day and time of the meeting, and a phone number that people can call to ask questions about the group, that’s gonna work anytime. And also, if you schedule your meeting so that it is a regular day of the week or month – you can say, for example, your group meets the 2nd Tuesday of the month at 2:00 until 3:30 – you don’t ever have to list a specific date and your flyer is gonna be good to use anytime.

You might want to also make a list, that you keep a record of, of who you are promoting to so that you can make sure to get the word out at least once a year to places like local or state agencies that serve people with vision loss. You want to look at local churches, libraries, senior centers, hospitals, definitely your local eye doctors, even opticians, and I’ve even seen them advertised on supermarket notice boards. Very frequently it’s not gonna be the person with vision loss who sees your notice, but it’s gonna be someone related to them who’s gonna let them know that they read this and maybe it would be a good thing if they attended.

Marketing is also something you can’t do just in the beginning. You have to think about the long-term life of your group. If you keep marketing, you’re going to be continually attracting new members. It keeps your group vital and fresh. Keep a record of who you contact to

Low Vision Focus Presents Vision Loss Support Groups Part 1 market to and when, and that way, if you ever have to change the meeting time or location of your group, you’ve got a list that you can quickly make a phone call to let them know of the changes. You can also use it anytime you’re doing something special, such as a guest speaker or a group outing. Every time you do that, it’s an excuse to contact everyone you’ve promoted to in the past, remind them that your group exists, and hopefully get some new people into your group. If you’re good with a computer, you might even want to think about making social media a part of your marketing approach and have a Facebook page or a way for members to connect who like using that type of communication.

And, lastly, involve your group members. If you already have an established group, why not give each member in the group four or five of your forever flyers and enlist them in helping you get the word out about the group. That’s also a way that you can spread the word. Your group members can talk about the group and leave a flyer with people they think might be interested to attend. Also, your group members, if they’re involved in marketing, they might have some good ideas as to where to go.

Think, too, about planning some fun events that can help attract people who are reluctant to have their foot in the door. They’re gonna come, enjoy their time, meet everybody, and realize that the low vision support group is

Low Vision Focus Presents Vision Loss Support Groups Part 1 so much more than thinking about vision loss. It’s about meeting all the people. It might not be what they imagined it was going to be, and that can be a very positive thing. Also, if you have any chance to attend local health fairs that are often put on by residential facilities and senior centers, sometimes you can get a booth that gives you a chance to meet people and hand out your flyer. That’s a good way to, again, extend the reach of your marketing efforts.

Any questions or comments?

Larry Muffett We do have some good questions written down, but I think – folks, if you don’t mind, we’ll continue with our presentation and address questions right at the end. We have just about 10 minutes left. But there are some good ones here, specifically about transportation.

Polly’s talked about marketing. I want to talk briefly about what group members need once you get them there, once you’ve got the group going. I’ll make this fairly brief, but there’s essentially three parts of a good support group meeting that all interplay with each other. They are facilitated discussion, informal social time, and then, finally, presentations by experts and professionals.

Low Vision Focus Presents Vision Loss Support Groups Part 1 Now, we’ve talked about being a good facilitator and the kinds of things that need to go on in a group, and a facilitated discussion really is a safe and accepting environment for all the participants. That means everyone feels comfortable about sharing their low vision related experiences. You can have a mix of purposeful activities and discussion/sharing so everybody can learn about the coping skills of other members and each other, and develop their own. Remember, it’s all about adjustment. You need to have an atmosphere in a facilitated discussion where people feel comfortable talking about and working through some pretty personal issues and experiences, and that will involve a certain amount of disclosure. That’s the act of revealing personal information, and that takes some trust to do, but it gives other members, once it’s done, a chance to offer support and ideas and assistance, and it fosters that atmosphere of trust. Now, additionally, to maintain trust, facilitators have to remember that they also need to practice disclosure and disclose information from time to time. There is a reciprocity there, as I mentioned before. Facilitators have to join in.

I will say also, Polly has written about this in her writings. She’s written a great manual on running support groups. She mentions humor, and I’ve seen this countless times in person in groups. A good facilitator really is able to find

Low Vision Focus Presents Vision Loss Support Groups Part 1 humor during the discussions, humor in their own situations, and help others find it in theirs.

Now, in addition to facilitated discussion, which is really important, I think every group really needs some informal and social time. Folks really need unstructured time just to talk about things, not a whole lot, but some, to talk about things unrelated to low vision, like family events, projects, trips, vacations, the weather, whatever. This is how people make connections and this is how people build rapport. Also, sometimes if folks have been isolated because of vision loss, it’s helpful just during informal social time to practice those unused social skills if they’ve gotten a little rusty. I mentioned humor already. It really is important for people to laugh together, not just about low vision related experiences, but about just about anything at all. Sometimes there’s moments in facilitated discussion that may be pretty emotional, so there needs to be a balance between serious content and not so serious content.

And, finally, meetings do require presentations by experts and professionals. A support group is really a great environment for this because it’s a perfect chance to spend time with an expert or a professional in an informal, personal, and yet structured, environment. If you go to a lecture, you’re one in a crowd. It’s difficult to ask the presenter questions. It’s difficult to get feedback on your

Low Vision Focus Presents Vision Loss Support Groups Part 1 own ideas. You really can’t interact in a large-scale venue, but this isn’t true for support groups. Members have the chance to interact directly with the guest presenter and to have an interchange of ideas.

It’s also important to have experts and presenters because members need access to accurate information. There is a lot of hearsay out there. I know probably every one of you, if you have vision loss, have been approached by a relative, or a friend in the supermarket, or a church, and have been told that, “Well, my Uncle Fred, he had this miraculous surgery,” or “he had this wonderful pair of glasses, and he couldn’t see anything, and now he’s driving and reading, and everything’s fine.” There’s a lot of hearsay about eye disease out there and about vision loss. People are often well-meaning, but they really don’t have accurate information. We sometimes hear rumors that vision agencies do or do not provide certain services. There are all sorts of rumors out there. So, visiting experts and professionals in your group can really clarify hearsay and passed down information and really help members sort truth from rumor. The grapevine really is misleading. It’s best to hear directly from the source, whether it’s a vision professional or some other kind of community resource.

And, finally, vision professionals visiting support groups generally really like to do that. They like to meet with

Low Vision Focus Presents Vision Loss Support Groups Part 1 prospective consumers of their services, and they like to provide, sometimes, instruction in a group setting, in a support group setting.

The three things: facilitated discussion, presentations by experts and professionals, and informal and social time. And I will turn the mic back over to Polly.

Polly Abbott Thanks, Ed. I’m just gonna close with some simple tips to keep in mind when you are interacting with your group members. I think this is helpful for everyone. I did originally create this list to help sighted professionals who had no prior experience interacting with people with vision loss, but I have also noticed that many people who have vision loss have sometimes never been in a group with other people with vision loss, and they can benefit from keeping these tips in mind too. For example, things like giving directions. I have witnessed visually impaired people saying it’s over there to another person who had vision loss. Remember to give specific directions, such as saying to the left, to the right, 10 feet ahead, to help people locate things. You can use audible clues, such as tapping on the back of a chair, to show where something is.

Make sure you’re speaking in a normal tone of voice. Ask first if you think someone might need assistance. Maybe

Low Vision Focus Presents Vision Loss Support Groups Part 1 they’re getting mobility training and they really do want to practice making their way around the room for the first time, exploring on their own. They may not wish to have assistance. Then again, they might be very pleased to accept. Make sure you know how to use good human guide techniques. If you are assisting a person from one place to another, offer your elbow for them to hang on to. And if you have any situation where you think somebody could be about to hurt themselves, or is not aware of a step, for example, just keep calm and say, “Please stop,” or “Please pause,” and let them know what the obstacle is. “Please stop, there’s a step down in front of you.” You’re just describing and helping.

I’m sure everyone knows this, but if a person comes with someone else, a companion, make sure you talk to the person and not just the companion. Avoid saying, “What does he want to drink?” Make sure that you speak to people directly. Ask if you have to move any personal items. Oftentimes, when people are coming in to the group meeting, they’re finding their spot, they’re putting their bag down, they’re looking for a place for their cane, and the next thing you know, someone else is coming. If you have to move something to make room for someone else, make sure you let people know that you have to do that and where you’re putting it.

Low Vision Focus Presents Vision Loss Support Groups Part 1 I think that’s all I have with just general comments for interacting. In Part 2 we will get on to handling the dominators of the group and learning how to encourage people who are a little bit quieter to participate. Okay Ed, back to you.

Ed Haines Okay. Yes, Part 2 is on June 16. That’s when we’ll be doing Support Groups Part 2. And we will be, as Polly said, addressing more practical aspects of low vision support groups. We did have a question from Ann about having people phone in because transportation is a barrier. And, Ann, I will just tell you that that can work. In fact, I’ve been speaking fairly often, recently, to virtual low vision support groups that are throughout the country, and these organizations everyone calls in. There’s not even a meeting place. It seems to be a really popular thing that seems to be growing. There’s a group out of California called Senior Center Without Walls that have some really great low vision support groups. But they do everything else too. They play bingo by telephone, they do all sorts of other groups, but they have low vision support groups. Having people phone in, I think, is workable. People do it and, if you’re interested in how it works, you might want to check out Senior Center Without Walls that’s in San Francisco and see if you can maybe listen in on one of their groups to get an idea about how it works.

Low Vision Focus Presents Vision Loss Support Groups Part 1 Do we have any other questions? Okay, it sounds like we don’t, so I’m just going to say Polly, thank you so much, this was a lot of fun. I’ve learned a lot and I hope everyone else has as well. I’m just gonna turn the mic over to you, Polly, for just a final goodbye.

Polly Abbott Thank you, Ed, it’s been a pleasure working with you and talking to the group today. If anyone who’s attending would like to speak with me or get more information, helping support group leaders is one of the services that Second Sense provides, and I can be contacted at 312-236-8569. Thank you.

Ed Haines Fantastic, Polly, thank you so much. We really appreciate you being here today and it was a lot of fun to do this. I look forward to working on June 16th. I know it’ll be terrific. I think we’ll bring things to a close. I have some closing announcements.

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