Managing Social Gatherings with Vision Loss

Hadley Presents

Managing Social Gatherings with Vision Loss

Presented by Ricky Enger

Ricky Enger: Welcome to Hadley Presents. I'm your host, Ricky Enger, inviting you to sit back, relax, and enjoy a conversation with the experts.

In this episode, we discuss confidently handling social gatherings with blindness or low vision. And our guest is author Hannah Fairbairn. Welcome to the show, Hannah, so great to have you.

Hannah Fairbairn: Hello, I'm delighted to be here.

Ricky Enger: And this is not your first time on the show, so welcome back, but for those of you who don't know Hannah, we'll just get a quick introduction and tell us a bit about yourself.

Hannah Fairbairn: I was born with cataracts, some babies are, and when I grew up, there was no support at school, absolutely none, except I sat in the front row. And then when I was 33, my good retina detached and it couldn't be fixed back. Then my other one started to detach. I had this giant loss of sight at 33 and ended up legally blind with just a little bit of vision. I was already a consumer of services, legally blind, and I was the parent of a kid.

And then I became a teacher at the Carroll Center for the Blind teaching personal management. Well, to start with, when I arrived, that was about cooking and laundry and grooming and shopping. But a couple of our clients came to me and said, "One aspect of personal management is how to interact with sighted people on the street, in a store, at doctors' offices, and of course, at parties and gatherings." And this was so obviously true.

We began to create little classes, little groups and big groups, discussing how to deal with this. We called them interpersonal skills and we role played and discussed all the obvious difficulties that people with low vision or blindness have in interacting. I have to say, we would have some really funny times as well as very emotional times. Eighteen years after I began there, I retired to write my book, When You Can't Believe Your Eyes. And of course, the second half of it is all about self-advocacy and a great deal of it about going to gatherings of all kinds. I'm delighted to be here.

Ricky Enger: That's fantastic because I know that it's something that we all struggle with as we approach the fall and winter holidays as we're recording this. There are gatherings all the time and it's supposed to be a time of celebration, but a lot of people approach it with this sense of trepidation because it feels like there are so many pitfalls to navigate if you're trying to figure out how to communicate effectively, how to just get through these social situations and hopefully have a good time along the way.

I'm hoping that we can talk about some of the scenarios that people often encounter as they're going to a social gathering and then give some tips and tricks for how to alleviate the stress and the dread that can come with figuring out what to do in these situations.

The first question that I have is about when gatherings are in a different environment. You're not at home, you're going somewhere that isn't so familiar to you. Are there things that you do ahead of time to kind of prepare for success? And then is that different depending on the size of the gathering that you're going to?

Hannah Fairbairn: Yes, it's very different. And the bigger the gathering, the more you have to prepare ahead. That's the first thing to understand because the bigger the gathering, the more visual the communication gets. People make eye contact, they wave, they smile, they kind of point to where they're going to meet. It's all about seeing. And of course, we can't do that. With a big gathering, you have to prepare. And the less sight you're left with, the more you have to prepare. And really with no sight, you have to prepare like crazy. And this is true.

First you have to decide whether it's worth going to the event because of all the preparation. And I wanted to encourage people to go, especially after the pandemic. We're all a bit out of practice. What you do is you're going to call, first of all the host or the place where it's going to be, and you're going to get lots of basic information about the type of event, where it's going to be held, whether it's a sit down meal or a buffet, what other people will be wearing.

And then perhaps most important of all, who else is coming? Because if you have some friends on the guest list, then that's your next step, to call a friend or two, get yourself a ride if you're not already going with someone, and then arrange to meet one or two friends at the event, have someone you're going to eat the meal with and arrange to have a good catch up chat with another friend. It makes a huge difference that you've prepared ahead. That's for big events. I should also say that informal events, events where people stand and move around, are more difficult than ones where there's a seating plan and a reception line. Those are the big gatherings.

A small gathering, six, eight, ten people seated around the table, is what almost anybody with vision loss prefers. At a casual event, a standing event, people turn their backs, they walk away. At a table, everybody's seated, the table itself provides a structure for the event. You might not have thought of this, but it's true. And people mostly stay in the same seat. They don't turn their backs. You find out where people are seated and then you can really relax and have a pretty good time. While at a big event, it's much more like work. You go because it's good for you, but it's work.

Ricky Enger: Great. You've alluded already to the fact that there are different types of gatherings, there are small gatherings and large gatherings, and there are different expectations and different ways that you plan for those things. How does it differ if you are getting ready for a gathering with family that maybe you have some history with, you already know at least some of the people, and if you're getting ready for a gathering where maybe you do know a couple of people, but primarily it's people that you don't know well?

Hannah Fairbairn: I think the difference is in expectations because we often think that a gathering with family, perhaps family that you don't see often, who don't know much about your vision impairment or blindness, is actually generally more difficult, more painful. It may bring up your grief because your cousin or whoever that you used to be able to see clearly and sort of enjoy his funny faces or something, now it's a blur or you can't even tell where he is. That can be painful right there. But also, people who you don't see much and who aren't comfortable with vision loss can even, and quite often do, make what they think are jokey remarks or insensitive remarks about your vision loss. And when it comes from somebody that you value, that you've always liked, or even people you don't like, it can cut really deep.

I do think when you're fairly new to vision loss, you want to make sure that you have kind of a protector at the event. Don't just go by yourself thinking, "Oh, I know them all, it'll be fine." It actually may be quite not fine. And so, it's good to line up one particular sister or brother or someone who's going to look after you at the event because people might not think of giving you a plate of food or finding you a drink. You do need support. And then in time, you'll get more comfortable and hopefully your family will also learn about vision loss. You'll teach them and it will all get more comfortable. But to begin with, it can really be a shock.

When you go to an event where you don't know anyone very well, this is a better place to experiment with, and if you're ready for it, saying something about your vision loss. You're going to keep it short, and not medical. If you're up for it, you could just say, "I'm having a bit of trouble with my eyes these days," or, "I can't see much in this light." Keep it really simple.

If you go with a companion, of course, it's easier, but people do tend to talk to the person they're making eye contact with. You might even do better going off by yourself for a bit or even the whole thing. And make sure that a member of staff, or maybe you can see it for yourself, puts you beside the refreshments or the bar where there's plenty of circulation. Then, just start to chat to someone who seems to be by him or herself. Again, you could say something about your vision or not, it's a very difficult decision to make, to say something about your vision. It feels like you're leaving ordinary life, even when you say very little. And maybe the person will offer to get you a drink. If you can leave that event having had pleasant conversations, I consider that a big success. You've laid some groundwork for yourself.

Ricky Enger: And maybe it depends on what your general personality is as to the kinds of strategies that are going to work for you and something that feels very true to you. And I guess having this group of strategies in your back pocket, so to speak, for how to deal with different situations means that you're having to do less thinking on your feet, which for some of us can be a really good thing, just to have a plan ahead of time.

Hannah Fairbairn: Yes. The more you can think through the gathering that you're going to go to, think what might happen, think how you will want to respond, and then having, as you say, various strategies in your back pocket that you thought through and really know what you can cope with and what can't, the more successful you will feel at the end, the more you'll feel, "Wow, I did it."

Ricky Enger: Exactly. And that's what you hope for. There are a few things that feel universal, some struggles that are very basic elements of communication that can be really difficult if you're lacking that visual aspect. For these things, it would help to have some tips on how to navigate them. And I had to chuckle as we were putting this list together of things that happen. And I was thinking, "Yes, I've had all of these happen and more than once." And so, any strategy is helpful. We'll just go through a couple of these real quick and maybe give some tips for how to handle it. My favorite is how do you find out who you're talking to? That's such a simple thing, but it feels really awkward, right?

Hannah Fairbairn: It does feel really, really awkward. And of course, it happens to people who see perfectly well also. And as we all know, the longer you leave it, the worse it gets. Do you try to speak up pretty near the beginning with some slight apologetic phrase? This depends on how much you want to disclose your vision loss. You could say, "I'm just not able to recognize you in this light," or, "I'm having real trouble with facial recognition." Or you could say, which is what I now say after many, many years, "I have very little sight and I can't see faces," but that comes after a lot of practice.

It's not wise and it's kind of dangerous to say, "I've forgotten your name," because it could turn out to be your close neighbor or something and they're going to think you're really, really standoffish. But if you can just practice something like, "Having trouble with my eyes," and suddenly people realize why you're not responding to their visual cues and they get more comfortable with you and you are more comfortable. Things kind of proceed more easily once you've sort of admitted that you can't recognize them.

Also, if you're meeting someone for the first time and they say their name, if you can tie the name to the face and the type of body they have, it's good to repeat the name back and ask how to spell it so that it really goes into memory. And if you really like them, you could ask them to dictate it onto your smartphone or something.

Ricky Enger: Absolutely. What about that moment when you sort of wish the floor would swallow you up because you realized that you've been talking and you trail off and nobody's saying anything and apparently you've been talking to the air?

Hannah Fairbairn: I know, this is really a killer. It is embarrassing, there's no doubt. Kind of comes with the territory. You need to be listening as you talk and make sure that the person's responding. If you do find you've been left, it's good to say something. "Oh, he left. Oh."

Ricky Enger: Right. People know you know now.

Hannah Fairbairn: Yeah, people know you know and that makes it better. And of course the other one is where you respond, which I do, to a remark intended for someone else. And again, you just acknowledge it. Don't let it lie there because otherwise people might think that you're not aware. Just say, "Oh, sorry," and the conversation moves on. And it's not important, though it feels awful.

Ricky Enger: It does.

What about if a conversation catches your attention and you're like, "Oh, I really have something to jump in there," or, "This group seems interesting." It can be really awkward to kind of muscle your way into this conversation that's already happening. Are there ways to do that gracefully?

Hannah Fairbairn: This is a tricky one. I do think that the most important thing is not to hover on the outskirts. Joining a group who are talking is a visual thing and it's said to be a complex one. Somebody looks up, sees you, makes eye contact, kind of makes a little space in the group. It's all visual. What you have to do is be bold, which is not the easiest. And it's easier if you have a white cane, if you're ready to carry a white cane. But in any case, you'd need to walk up, be cheerful and firm and say, "Do you mind if I join you? My name's Hannah." They probably won't mind that. There's no way to do it other than with confidence.

Ricky Enger: All these are really, really helpful tips for navigating things that happen more often than might feel comfortable, but I think the more practice you have, the more likely you are to approach it with, I guess, bravery and more confidence.

Hannah Fairbairn: Yes, and more comfort with where you are in your own journey with vision loss. It feels so alien to begin with. And then gradually you begin to get comfortable with it, and even think that in some aspect, you turn into a really good problem solver and a really good listener.

Ricky Enger: Here's one that I don't hear spoken about that much, but it is one that has happened to me on a number of occasions and I think it happens to others as well. If you have for whatever reason gotten to the gathering early, here you are, the host is running around getting all the last minute things done and there's that feeling of being parked in a corner and you just feel useless and pointless as you sit there and everybody else has something to do. Are there any strategies for figuring out a way that you can contribute and be a part of that preparation before the gathering happens? Even if you're in an environment where you don't really want to go running around and knocking things over, is there still a way that you can contribute and feel like you're a part of things?

Hannah Fairbairn: People with full sight who are feeling a bit nervy and anxious before the gathering begins are very apt to try to park a person with vision loss. It's very, very common because it kind of makes them, the host or whoever, feel comfortable that they've got you dealt with, "Oh, she's there." But do not allow yourself to get parked unless you're in real pain and you really have to. Say, "Oh no, I don't want to sit down. Thanks." And try to find a seat next to the kitchen because the kitchen is often where everything's going on. Or just stand, not in the entry or you'll be in the way, but kind of just beside it, and try to get into the conversation. Be very cheery and admire like crazy. This is to be positive and outgoing, whatever you feel like inside, which can be pretty uncomfortable but better than getting parked.

Now, if you know the host, you could call up and ask about the event, which would be very wise, and then say, "Could you save me a job? I can count plates. I can roll silverware into napkins. I can put cookies on plates. I can put glasses on trays. Just leave me a job or two and I'll sit somewhere and do it."

There was a sociologist, a very famous sociologist writing in the 1960s. He said, "Present yourself in the way you wish to be perceived." What it means is you have to project a positive, cheery image so that the people who are rushing about will get a bit more chatty and will get a bit more comfortable with you. But you have to get this idea that you have to present yourself as a really more than adequate person who's up to everything and needs to be included because you're worth it. It does take courage to do it, but we all get there in the end because it's the way that works.

Ricky Enger: Absolutely.

We've talked a lot about attending gatherings elsewhere, but maybe you are feeling confident enough to have a gathering in your home. And there's some pluses to that because it's your own environment, you're very familiar with it, but are there things that you can do when you're hosting a gathering just to make sure that everything does run smoothly and to make sure that nobody's kind of stepping in and taking over things that you have well in hand?

Hannah Fairbairn: Yes, good one. Again, you're going to think through the situation. And if you haven't done this for a while, it might be good to start very small. Just invite two or three neighbors or good friends in and put everything you're going to serve on a tray. You could even plug in a coffee maker, put it all on a coffee table, on a side table, everything ready. And then when the doorbell rings, greet them and seat them. This is your home, so you need to make it clear that you're in charge here. And again, that's very hard to begin with, but it's your home and you don't need anybody to take over, provided you're all prepared.

And then if you seated people, you know where Michelle is sitting and where Brian is sitting and so on. And then you invite them to help themselves so you don't have to do any pouring. Because you're the host and the natural center of the gathering, you don't have to worry too much about the conversation going all about soccer or something or all about the latest movies.

When you graduate to a slightly bigger gathering, I would have everybody, again, sitting around the table just like we talked about before. And you prepare everything, keep it really simple, maybe a one pot meal with some rolls or maybe a chopped salad, and then lay out trays to receive dirty dishes. And you can either invite people to serve themselves, you've got it all ready, or you can serve them and just ask for one person to help.

You can point out that it's not safe if somebody comes in and interferes. The visual ideas that people have, the ideas they have about blind people carrying hot things or sharp things or things on the stove, are only made hazardous by their presence and by their interfering with what you're doing. That's the hazard. You don't want any stray people in your kitchen while you're getting things ready.

If you're ready to disclose, you could say, "If you don't put things where I tell you, there may be a big crash later on." It just depends how comfortable you are. And yeah, it is very hard to be different. It's really tough and it does take time to get up this feeling of confidence and firmness and telling others how you want things to proceed.

Ricky Enger: Well, for a variety of reasons, people may be attending gatherings but not in person. Virtual gatherings certainly were instrumental in getting a lot of us through the pandemic and we're still in that situation. Again, for a variety of reasons, perhaps you all can't be together geographically, there are health reasons. There are any number of things that would prevent people from being together. I'm wondering if there are things that are specific to virtual gatherings and maybe even some things that are less of a challenge in those environments as opposed to being in person. Do you have tips on things that people haven't thought about if they're attending a virtual gathering and what they can do to make things easier for themselves?

Hannah Fairbairn: Yes, indeed. If you have some useful vision, I recommend getting on a Zoom call on your own tablet or your own laptop because then you can get on the speaker view, which is when you see the person who's speaking right up close. I can see things that I couldn't see in real life. That can be a real advantage.

Another thing is that if you don't want to be on the screen, you can just do the Zoom as an audio call and then you will not be visible to the others even if they can see each other. And that's fine and you can catch up and you're in your own home and comfortable and it can be quite pleasant.

Ricky Enger: That's fantastic. And I know sometimes it can be a challenge to find virtual gatherings if you're looking for a place to go and talk with people. In our show notes, we'll have links to places that you might go and search for local virtual gatherings as well as those that are international. That's kind of the beauty of it is that you can enjoy that drink and snack with people from all around the world.

Hannah Fairbairn: You certainly can. It's wonderful. That is a real advantage and you don't have to work out how you're going to get there.

Ricky Enger: Yes, no more stressing about transportation. I love that part. Also, in our show notes, we'll have a link to Hannah's fantastic book, When You Can't Believe Your Eyes: Vision Loss and Personal Recovery. And you can get that in a number of formats. You can check out the show notes there.

Hannah, I'm delighted that you could stop by and share both your own tips and tricks and I think we all learn a lot along the way and it's wonderful to be able to share those tips with each other.

Hannah Fairbairn: Yes, it certainly is. And if I were to leave listeners with one tip, it would be to overcome your reluctance and resistance as soon as you can by getting in touch with a support group or the agency in your area. Get to know a few other people who live with vision loss, or very many, because it can really be so much fun to be with a group of other people to share stories of what happened and suddenly you've got a group of people who live like you do and think like you do and it is transformative.

Ricky Enger: Yes. Thank you so much, again, for sharing your tips and your tricks and just your wisdom with us. It's much appreciated.

Hannah Fairbairn: Oh, well thank you. I'm delighted to be here and very, very happy holidays to everyone.

Ricky Enger: Got something to say? Share your thoughts about this episode of Hadley Presents or make suggestions for future episodes. We'd love to hear from you. Send us an email at [email protected]. That's P-O-D-C-A-S-T @hadley.edu. Or leave us a message at 847-784-2870. Thanks for listening.