(gentle music)
Welcome to Hadley Presents.
I'm your host, Ricky Enger, inviting you to sit back, relax,
and enjoy a conversation with the expert.
In this episode, support group leaders Judy Davis
and Lynndah Lahey, our joined by Director of Community
Marc Arneson to discuss low vision support groups.
I am so glad you guys could join us.
It's always really, really fun to have
kind of a panel discussion
because we are getting the viewpoints
of not just a couple of people.
We actually have four of us in the room.
So I think it's gonna be a great time.
Before we get into talking about what each of you does
with your support groups and just how important
those things are, let's do a little intro
and find out a bit about each of you.
Let's start with you, Lynndah.
Sure. Happy to.
Bottom line is I have quite a varied background.
I knew nothing about low vision, low vision support groups,
or anything like that when I joined Wheeling Township.
So this is the smallest portion of my job
in terms of responsibility here.
The township is a small form of local government.
Marc knows firsthand that it is the single most favorite
thing that I do.
My background is varied.
I spent many years in communications, marketing, and sales.
Took some time off living out of the country.
And then when I came back, decided that I wanted
to start a new chapter in my life
and went the nonprofit route where I was an executive
director for a nonprofit,
and then came here and joined as the director
of Senior and Disability Services.
On the first day I started, they told me that,
"Oh, by the way, you have to run a a support group."
And I said, "Great, what's that?"
And they said, "It's called VIP.
It's the VIP Low Vision Support Group."
So I literally kind of got dropped in head first.
And here we are five years almost to the day that I started.
Awesome. And how about you, Judy?
I actually have retinitis pigmentosa.
And I was diagnosed at a fairly young age,
but it wasn't till I was in my twenties
when I moved from my familiar area in Indiana
out to Pennsylvania that I realized how much I was relying
on familiarity to get around rather than my vision.
So luckily I found out pretty quickly
that there was a support group in that town.
I started attending the meetings, and I kind of got involved
with it in that kind of progressive way that you do
sometimes with organizations you get involved with.
You know, I started making phone calls to members
to tell them about the meetings,
and then I started arranging transportation,
and then I started doing program directing.
It just kind of built from there.
I was in a situation where I moved.
So I've actually lived in four different states.
So I've been involved with different support groups.
And so I think that has introduced me to different goals
of different groups, and I've learned the good
and the bad from those groups.
So I think that has really influenced
how the support group here is run.
My education is actually in library science,
so I'm one of those organized, detailed people.
So I think that helped, for me, you know,
having vision loss myself,
that first support group I got involved with, you know,
it just changed my life.
Being with other people with vision loss,
that is just so key when you're on your vision loss journey.
Yes. Just having somebody who's been there
and knows what it's like, or is going through that
at the same time as you.
I think you're right, it's incredibly important.
Marc, as part of your job, you actually get to interface
with a lot of these support groups.
Why don't you just start by talking a little bit about that
and then just head right into your questions,
'cause I know you've got a lot.
And this conversation is going to be so informative
and so important, so I'm looking forward to it.
So, as you mentioned, my title here
is Director of Community, and I always like to share
that I think I have the coolest job in the world.
What I get to do is just be a part of these different groups
and just share about Hadley and things that we're doing,
and just do a lot of listening and understand other ways
that Hadley can be even more helpful.
And I've had the pleasure of firsthand being a part
of both of these groups, Lynndah and Judy's groups.
And I am curious, can you tell me
just a little bit about your groups?
Maybe the number of people that have joined them,
how often you guys meet, what that typically looks like
each time you guys meet?
This is Lynndah.
Unlike Judy, I don't have any vision loss.
What I find really interesting about this group,
my group in specific, we have about 45 members.
When I joined, I started here in 2016.
The group itself was founded in the year 2000,
sort of organically, much like Ricky's probably started,
where someone in the community raised a need
to someone here in this local government office.
And I'm not quite sure exactly how it started, but it did.
And it's been going continuously, continuously.
So obviously into its 21st year, which is really exciting.
The group hovered around 20 or so for many years.
People came and went and so forth,
but there are a few core members who have been in the group
for well over a decade.
And that, in and of itself, helps.
What I specifically find so interesting about our group is,
first of all a large group.
I love the fact that it is so varied.
I've got group members from the age of 40 to the age of 95.
I've got group members who were born blind
and group members who were just diagnosed last week
with maybe macular or glaucoma.
Several people who use guide dogs,
several people who use canes,
several people who are still driving,
several people who live well out of the township
and therefore use ADA transportation to get here.
I mean, it's so varied.
Everything again, from congenital blindness,
to Stargardt's, to all kinds of stuff.
So a really interesting, varied group.
And for me as this leader who stepped into the role,
I find that especially intriguing for me.
Everybody's needs in this group are very different.
I've come to rely on a few people in the group
who just have that knack, that knack of being very welcoming
or being really attuned to someone new joining the group.
If somebody new is coming to the group,
I will call that person in advance and say,
"Oh, you know, somebody new's gonna join."
Back in the days pre-COVID,
when we could see people together, I would say,
"I'm gonna put this new lady next to you.
You know, kind of introduce her
to the other people at the table."
So I've kind of worked the crowd, so to speak,
to try and get to know certain people.
Obviously we're not meeting in person.
We've gone to all Zoom meetings.
The thing that I also find really interesting
about our group is that not only does it include people
with visual impairment, but in many cases their spouse,
or their sibling, or the next door neighbor also attends.
And I've really had fun with that, too.
So that makes our group, I think, particularly interesting.
It's very varied.
This is Judy, and makeup-wise
we're very similar to Lynndah's.
You know, the age range is the same,
the vision loss range is the same.
Our group is older as far as length and time in existence.
If I had to guess, it probably started in like 1990 or so.
And it started out connected with a low vision center.
I joined into it when I moved here in '98 in North Carolina.
And again, I kind of did what I did
when I was living in Pennsylvania.
I started at one level, and then eventually
I got a job at the low vision center,
so then I ended up co-facilitating it.
And then, when the low vision center closed,
it's all very volunteer-oriented now
as far as who's helping with it.
If I had to guess, we probably have
between 40 and 50 members.
And when we met in person, we probably had
between 20 and 22 attending.
Now that we're meeting over the Zoom platform
during the Coronavirus, we're probably averaging about 18.
And the reason for that number discrepancy is,
I don't know how Lynndah does it in her group,
but we have callers that call our members
and tell them what the meeting topic is.
And again, pre-COVID we would find out if they needed a ride
and to see if we could help them with transportation.
Many of our people never actually make it to the meeting.
Just that relationship between the caller and that person
is all that person wants or needs, I guess.
But then we do have a significant number
that people that come in.
The way our meetings run, as far as a plan goes,
is the first 10 or 15 minutes are social time.
And it was really great when we could meet in person,
'cause we had homemade cookies and we had coffee,
and we had drinks and yeah, that just makes that interaction
so much easier, especially for the newer people
to have that time.
And then the next 10 or 15 minutes it's myself.
And then here in North Carolina, they have a social worker
for the blind and our county is very blessed
with the person we have.
And so she and I take turns making announcements
and we both co-facilitate, which I think really helps
to have two of us working with it as well.
I've actually had the pleasure
of being in person in Lynndah's group, Judy.
I haven't been, from a distance with the pandemic,
but you know, the interesting thing is,
as part of my role, I do get to visit a lot
of different groups and share about Hadley,
and I do hear about the challenges
of keeping people engaged, especially when you're online,
and you're using Zoom, and things like that.
But it seems like you guys have been able
to kind of keep a group consistent
and people engaged and meeting together.
Is there a secret to that?
Like, what is it that you do to help
really kind of engage your group?
Judy, if you wanna go ahead and share first.
I think part of it is 'cause we were such
a well-established group that most people
were able to transition in to doing it by phone.
I mean, we did lose people because of the technology
that's involved, which is sad.
But I think also we do still have that social time.
We have now gotten into more game playing
since we went COVID, I think we've played games like
two or three different times, maybe?
We've come up with some really good ways
to play games over our meetings and just,
I know one of our members said,
"All those endorphins from all of us laughing
and just having so much fun together,
just really made a difference."
I think Judy and I are very similar in probably
how we lead our groups.
How I approach the group is very similar to Judy's in that,
to me, my goal with this group is to be as positive,
as uplifting, and let's have fun.
You know, so we've kind of got this really great
rapport going on.
Like Judy, pre-COVID, we were meeting in person.
And yes, the socialization was great,
following a basic format, almost identical to Judy's.
Socialization, announcements.
I always used to have a speaker when we were meeting
in person, and then kind of follow up
with sort of something funny or poignant at the end.
What's interesting for my group is that we generally
always had about 35 in person when we were meeting.
I'm delighted that I'm still getting anywhere from 22
to about 27 on the Zoom calls every time.
The very first couple were really tough
because we were all struggling, me included,
trying to figure out where the mute button was,
how to get the camera in the right place.
And now we are all just doing so well.
But what I will say, I had three or four people
in the group who just, "I don't wanna be on camera,
I'm uncomfortable being on camera."
And so I worked with each of them individually
to let them know they could just pick up
their landline and call in on the phone,
so it would be just like talking to a friend.
I've gotten to know each person, gotten to know
kind of their strong points, their weak points.
And for those that are uncomfortable being called on,
so to speak, when we go around the room,
I already know that they're not gonna wanna share.
So I'll just say, "Oh, I can see Suzanne, you're here.
I know you didn't really wanna join in today,
but you know, don't forget to raise your hand or interrupt
if there's something that you'd like to say."
And so much of it is that knowing each person individually,
but being really open to it.
So much of it comes down to the personality of the leader.
I have so many responsibilities in this job here
that I do for the township.
This is literally the smallest part of my job.
It's the thing that I'm happiest to spend the most amount.
I spend as much time as I can on it because it is a direct
level of service back to the community.
And it allows me to kind of give back in ways
that I can't in my regular government job.
So because of that, it's an opportunity for me
to give love in a group setting.
And as corny as that sounds, it comes through,
and I know the members who have stuck with us
really enjoy it.
And so that, for me, makes it really worthwhile.
I wonder, do you...
I know that many people at this time
are feeling disconnected, feeling isolated, feeling lonely.
And I know that having a vision impairment
can kind of even add a another layer to that.
Do you see that people are using your support groups
in a way to kind of meet some of those particular needs
or challenges that they're facing?
For me, yes.
I think the one thing that has changed or evolved
for our group is that over the last year I've stopped
having speakers, because what I realized pretty quickly
is that people, when they got onto the Zoom call,
they wanted to talk, and they wanted to just say,
"Oh, so what's happening?
Oh, last month I know you went to the hospital,
what happened?"
And it truly has become more of what I would consider
a support group in a different kind of way,
as opposed to here's a speaker that's talking
about the latest thing in macular degeneration.
And so it's been a very interesting evolution.
I'm finding people wanting to come back
for that one-on-one time.
And it has also encouraged people
calling me outside the group.
So again, that's something new over the last year.
It's a little bit different with our group
because when we met in person,
probably every third meeting was either a group discussion
on a specific topic, or it was a coping meeting.
And then the other two meetings would be a topic
or a speaker kind of thing.
One of our members had this great idea, it's like,
"Why don't we just have a second meeting
where people just talk?"
So to get rid of that isolation and stuff.
And we're actually gonna be trying that
for the first time this Friday.
We will see how it goes.
And it was interesting when Lynndah was talking
about different people, personalities.
I actually talked to a potential new person today.
And I was telling him how we were gonna have both these
meetings, or our new social time meeting this Friday.
That's the second Friday of the month.
And then our fourth Friday of the month meeting
will still kind of be that same structure
where we have announcements, we have a set topic,
we talk about coping.
You know, this Friday's gonna be a kind of free for all.
So I was talking to this man and he's got a new diagnosis.
You know, he is still driving.
He said, "But I'm just so scared
because I don't know where this is going."
And he had a father who basically got a diagnosis
and then just sat in the chair and lost his vision,
which is just so sad.
So when I was talking to this person, I said,
"Look, you know."
He said, "Well, maybe I'll come to the fourth meeting,
the fourth Friday meeting, the organized,
detailed meeting kind of thing."
I said, "Well, you know, you might wanna come on Friday."
I said, "You can be a lurker."
And you know, he's in his seventies.
And it's like, "What does that mean?"
I said, "You could just come and listen.
And if you find a point where you wanna say something,
then step in and say it.
Otherwise you'll get to know the group,
and you know, start putting names and voices together,
and just see when you're ready to step in and share."
And that's actually one advantage of doing the Zoom
versus the in-person."
I agree.
I think actually this has ended up providing us
with another avenue that I would've never thought
about exploring had we not been sort of forced to do it.
When this all first started, we were all trying
to figure out, "Holy cow, what on earth is going on?
How are we gonna do our jobs?"
And no one gave a a second thought to the support group.
And I kept thinking, "Okay, now more than ever,
I gotta keep these people together.
How am I gonna do this?"
And what's interesting is that what's come out of this
is that in my specific group, I've actually got some people
who are attending more frequently,
who had difficulty to get access to transportation,
but they've shown up every month on the Zoom call,
because of course they don't have to take transportation.
So I've had a few people say to me,
"You know, after we go back meeting in person,
do you think you could still do a call
like this every month, too?"
So my goal, of course is to not lose the Zoom,
but to add back in the personal meeting.
It's wonderful that you guys have been able
to maintain these groups, and these attendance,
and the engagement.
Do you ever run into members or people who are considering
joining the group who are hesitant or reluctant to do so?
And what do you kinda share with them
to encourage them to consider it?
This happens all the time where people...
I mean, it takes a lot of courage for someone
either to stop in my office and say,
"Oh, I hear you've got a support group."
Or to call and say, "My neighbor, is having vision loss
and I told her I'd find out about the support group."
So first of all, I'm delighted when people even stop to ask,
'cause that's the biggest thing that they can do,
is put in a query.
I definitely like to talk to the person individually,
and I like to walk very carefully.
I don't pound them with too many questions of,
"So what do you got? When's the diagnosis?
How bad is your vision?"
You know, I don't kind of go down that route.
But just ask them, so what are your concerns?
And what do you like to do?
And tell me a little bit about your background.
What did you do or do you do for a living?
So I try to get to know that person first,
and then it's no different than a sales pitch.
So then just try to see if we can kind of talk in common
and then eventually tell them,
"You know, this is what it's like coming to one of our
support group meetings."
As Judy referred to kind of being a lurker,
I encourage them to come and be a lurker.
And if they don't wanna participate,
I won't put them on the spot.
You can bring your spouse.
You can bring your daughter.
You can come and enjoy the food, or via Zoom call,
call in on a landline,
and then that way you won't even be seen.
I try and meet them where they are.
I've also spent countless hours literally doing one-on-ones
with people to help them learn how to use Zoom,
if that's what they wanna do.
So I think that has also helped for some of the new folks.
Sometimes they come and they participate
two or three times and then they're gone.
And that's okay.
You know, you can't get everybody to stay.
But I think the whole thing is to not make them feel
that they're gonna be put on the spot.
I want them to feel like they're welcome
and that I'm gonna be supportive for them.
If they don't wanna come back, that's okay.
I've done my best.
So that's how I approach it.
So many things that Lynndah said was just right on,
you know, as far as our group too.
A couple things I'd like to add.
I have to confess, I'm a closet introvert.
Every once in a while it rears up its head and I wanna hide.
Since I have been involved with different support groups,
I have had to reenter, you know, those groups
as I've moved from state to state.
Since I am an introvert, walking into a meeting
where there are that many people is intimidating,
even though I know that we have that shared ground.
But a couple things I encourage people with,
you know, like Lynndah was saying, I kind of explain
how the meeting is set up and what's gonna happen.
I give them a rough feel for the age range,
and different eye conditions, and things like that.
I encourage them to come to more than one meeting
because one meeting, that topic may have not have been
of any interest to them at all.
And so coming to more than one meeting
gives them a better feel for the group.
And it is so clear for both of you guys
that this is not a job for you, but it's a passion.
And it speaks volumes as to why I think people
are engaged in your groups,
just because it's so important to you.
I have just one last question.
And again, I wanna thank you guys
just for spending this time with Ricky and I,
but if you had to put your finger on the thing
that you enjoy most about your support group,
what would you say?
I think for me, from a selfish point of view,
it's an opportunity that allows me to give from the heart.
I work in a government job, and generally government workers
aren't giving from the heart.
You know, they're doing their job.
I run transportation, I run all kinds of things.
But this opportunity allows me to give.
I think getting to know each one of the people
in the group gives me such personal pleasure
that I think it's very easy for me to try and grow the group
because I just am emotionally so involved in it.
So, like I said, it's a real labor of love for me, for sure.
For me, because I do have a vision loss,
there is just nothing like walking into a place
where you are surrounded by people that you know
understand what you're going through, you know?
I mean, even though I've had vision loss
for many, many years now, it's just like coming home.
You know, it's just that sense of love, and camaraderie,
and humor and that's it for me.
It's just, you know, 'cause my family is not where I live,
but my support group is my family
because that is where I live.
That's such a perfect summation.
I love that.
And this whole conversation has been amazing
because, as Lynndah pointed out in the beginning,
even though each of you has a completely different
background and you're coming to this from different places,
so to speak, there is just that common thing
of wanting to bring people together
and recognizing that people do need support,
and they do need that comradery, and sort of that bond
of being in the same room together and knowing that,
"Hey, the other people here have experienced things
that I'm going through,"
or "I actually have some advice to share
for this person because I've been there."
That kind of thing.
I think it's wonderful.
As we wrap up here, and again, I really, really appreciate
all of you for joining.
Is there anything that we didn't touch on
that you would want to say to someone,
either who's thinking about going to a support group
and just hasn't yet?
Maybe they're thinking about starting a support group
and they just haven't yet?
Any final thing that you wanna share?
What comes to mind is to be brave.
It's so hard when you have a vision loss,
especially when you're new to it.
Because I went through years, and many people do,
where we try to fake having vision loss.
And luckily, when I made that move to Pennsylvania,
I could no longer fake it.
And so it's like, oh my gosh, it's so much easier
to tell people I have a vision loss
and that is why I need help,
or that's why I didn't wave back at them.
And so getting involved with support groups,
it helps you increase that courage.
You know, if you start by being brave
and going to that meeting, your courage increases
because, like you were saying, Ricky, you find people
that have already conquered some of those mountains
or those mole hills, and you can do it
if you know that other people have done it.
Oh, ditto. I couldn't say that better.
And coming to a support group as a leader
in a completely different capacity as Judy,
it is that sense of, "I want to make sure
that they feel brave."
And so I try and bring as much information to the group,
and try and help them find the resources that they need
because it's so rewarding to watch somebody
gain that courage and that confidence,
and there's just nothing better.
So again, Judy, you hit it spot on.
It helps you be brave.
And ask for help.
Whether it's help to start a group
or help to go to a group, don't be afraid to ask.
Ask for help.
Thank you both so much for that.
And thank you for joining us here on the show.
I appreciate all of your time
and all of your wonderful information.
Thank you.
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(gentle music)