(upbeat music)
Welcome to "Hadley Presents."
I'm your host, Ricky Yager, inviting you to sit back, relax,
and enjoy a conversation with the experts.
In this episode, we address the topic of shame
as it relates to vision loss.
And joining us
are Hadley's director of community, Marc Arneson,
along with psychologist Ed McDaniel
and social worker Jeff Flodin.
Welcome to the show, everybody.
Hey, Ricky. Thank you.
Wow, we got a full house today.
That's exactly what I like to see. (laughs)
So before we jump into this topic,
and it's an incredible one,
it's actually something that people ask about
from time to time, so I'm delighted
that we're having the chance to really dive into it.
But before we do that, why don't we just get an idea
of who everyone is.
Marc, we'll start with you.
You're no stranger to the program
but just a brief one or two sentences
about who you are and what you do.
Yeah, sure, of course, Ricky.
I'm Marc Arneson.
As you had mentioned, my title is director of community.
What I do is I actually spend a lot of my days
just meeting interesting and fascinating people
and talking about all the things that we do here at Hadley.
So I get to join a lot of low vision support groups
and just share about all the ways that we can help.
Nice, alright.
So, Ed, how about a little bit from you?
Tell us about who you are and what you do.
Sure.
Ed McDaniel, and I've been a psychologist for quite a while.
I retired from the state of North Carolina after 30 years
and worked for a nonprofit for a while.
And more recently, I've been transitioning
to doing more work with people with vision loss.
My previous 30 years was a whole variety
of people with disabilities.
Excellent, thank you,
can't wait to hear your perspective on things.
And, Jeff Flodin, you too are no stranger
to the "Hadley Presents" podcast.
We've had you on once before.
But for those who may not have heard that episode,
give us a bit about who you are and what you do.
Thanks, Ricky, and it's nice to be back.
My name is Jeff Flodin.
I'm a social worker.
I got my MSW when Gerald Ford was president,
if anybody remembers him.
I'm also a writer.
I'm the author
of the Jalapenos in the Oatmeal: Digesting Vision Loss blog,
which deals with how to cope with vision loss.
I try to be humorous, serious,
and practical in alternating blog postings.
I live in Fort Collins, Colorado
but spent most of my time,
including the last 12 years or so, in Chicago,
where I've worked for Friedman Place.
Excellent, thank you for that,
and also looking forward to your perspective.
So it's interesting, you know, "Hadley Presents"
is kind of a grab bag of things,
and we talk about a lot of practical things,
and we talk about technology, cooking,
the sky's the limit, I suppose,
but maybe someone is listening and thinking,
why exactly are we going to talk about shame?
What's the importance of discussing that in vision loss?
Maybe it would help to,
I guess, frame the conversation a little bit
and talk about what the definition of shame is
and see if everybody even agrees on that.
And then once we're on the same page,
we can get to Marc's questions.
So the, I guess, formal definition of shame
is a painful feeling of humiliation or distress
caused by the consciousness
of wrong or foolish behavior.
I don't know if that's exactly what I think of
when I think of shame,
so why don't we just see where everybody is on that.
What do you think about this definition?
Yeah, Ricky, after hearing that definition,
actually, it is really interesting to me,
and it makes me think.
And, Jeff, I don't know if you wanna jump in here,
but I'm curious about your thoughts
of where you think shame comes from
or, you know, what might be the source of shame.
Thanks, Marc.
With regard to the definition,
my understanding of the difference between guilt and shame
is that guilt is a feeling that arises
when you do something wrong.
It's an action.
And shame comes more from a feeling
that who you are, yourself, your core,
is deficient or even worthless.
The difference, I think,
is partially that guilt can be assuaged,
let's say, by asking forgiveness,
or going to confession, or whatever you do in your culture,
whereas shame hits a lot deeper into the core
of the personality.
It's almost like a rejection of self.
And I think there's a lot of different applications of shame
in like psychology, which I'm sure Ed will look at.
But in the vision loss realm,
I think if a person feels shamed by what they perceive
as the deficiency of vision loss,
then hopefully it won't go any further than that.
It'll just be a part of their persona
that they feel deficient or less than.
Yeah, you know, thank you for that, Jeff.
Yeah, that's really helpful.
Ed, do you have anything that you wanted to add
to Jeff's comment?
Yeah, I think Jeff described it very well.
You know, I think in regards to vision loss,
and first of all, you know, just to state that shame
is a very common, normal emotion that we have
for a whole variety of reasons.
But as it relates to vision loss,
I think the source, I would say,
would be that we may feel different,
maybe feel that we don't fit in,
that we're not good enough or as capable as others,
afraid that others will not accept us
or may treat us differently.
So it is, as Jeff described it,
you know, it's how we feel about ourselves
but also our perception of how others may feel about us.
Gotcha, yeah.
And I think too that it's important to point out
that shame is a necessary part
of growing up.
It's important for a child,
when they reach the terrible twos
or when their ego is just boundless,
that the fact that they are not omnipotent is reinforced.
And some of the ways that shame are helpful,
or at least ordinary in growing up,
is the feeling of bashfulness,
which does have maybe a benefit of keeping people
a bit cautious as to their relationships and so on.
And then embarrassment,
which is also kind of a check on somebody's behavior
that says, oh, no, I think I went too far with that.
When it gets toxic, like some people refer to it
as a difference between ordinary shame and toxic shame,
is when it really starts being self-destructive
and hurtful to your perception of yourself.
I'd never heard those differentiations before
between toxic and ordinary shame.
That's so interesting.
I'm curious, I know, you know, both Ed and Jeff,
you know, living with vision loss yourselves,
I'm wondering if you could just share
how feelings of shame may have affected you
in your own lives?
Jeff, I don't know if you wanna go ahead and share first?
Sure.
Well, a bit more background.
I was diagnosed with retinitis pigmentosa, also known as RP,
when I was 35 years old.
I had no background in vision loss.
Even though RP is hereditary,
nobody else in my family had it.
So I was really thunderstruck by that definition
which came totally out of the blue.
And my initial reaction to the diagnosis and the prognosis
that I was exposed to for RP
was to feel that, maybe even beyond shame,
the world was coming to an end.
And I started listing
the roles that I had as a 35-year-old man.
Who would love me in this deficient state?
There were practical things.
How am I going to drive?
How am I going to learn if I can't read print?
How will I keep myself going and energized
when I can't play golf or take photographs?
So there were a lot of roles, like, what I am,
but the shame kind of hit deeper than what I am.
It hit, who am I going to be?
What's gonna be left?
Thank you for the honesty, Jeff.
I appreciate that.
And, Ed, I don't know if you wanna share as well.
You know, maybe the same question,
you know, how feelings of shame
maybe have affected you in your own life?
Sure.
Like Jeff, I also have RP,
but in addition to that, I have hearing loss.
And so what I have is called Usher syndrome type 2A.
So that means I've been hard of hearing since birth.
And as I got older,
the RP started to reveal itself.
And I've been slowly losing my vision most of my life now.
When I was five years old, I started wearing hearing aids.
And around the time I became a teenager,
I can see that I was feeling shame about my hearing loss
because I started to make sure
that my hair covered my hearing aids.
Developmentally, when you enter your teen years,
you are more concerned
about what your peers think about you,
and so that was something that I wanted to hide.
So I think that's common with feeling shame
is that we want to hide what we may see
as a deficit in ourselves.
And so, as a young adult,
I began to come to terms with my hearing loss.
But then at that point,
I was diagnosed with the vision loss.
And so then I started feeling shame about that,
you know, having some of those similar emotions
that Jeff talked about.
And so it was kind of going through that same kind of thing
but for two different reasons.
And I think that in my case,
with progressive vision loss,
as both Ed and I experience,
you can feel that you've adjusted well
to a certain level of eyesight,
and then all of a sudden it diminishes,
and you're almost back at square one
if you're talking about the grief reaction and so on
and denial and all that kicks in.
But in general, I think it's like the shame
starts to kick in at times
when you don't feel adequately equipped.
And it's like too soon to go public with this.
It's too soon to be out there
under the scrutiny of the public.
And those are really the most self-conscious times,
like the first time that you go out in public
after you've had training with a white cane, for example.
No, that's interesting.
And, Jeff, when you talk about that
and, you know, you talked about the roles
that you've played in life as a photographer,
a golfer, things like that, but these moments
when you don't feel adequately equipped, I think,
is what you said, too soon to go out in public with this.
And I'm curious, you know, just your reaction to that
and maybe, you know, in addition to that,
is there times where maybe you felt this idea of shame,
this concept of shame, more strongly throughout your life,
and maybe what do you think
has led to some of those moments?
I think for me, particularly as Jeff mentioned,
starting to use the cane was probably the time
that I felt it the most in my life.
Certainly before that, you know,
I stopped driving when I was 29.
I felt it to some degree at that point,
but with the cane, it was probably the most.
When I got a guide dog last year, I didn't feel that at all.
At that point, you know, I think I had come more to terms
with my vision loss
and I was really excited about having a guide dog,
where I wasn't so excited in the beginning
about getting a cane.
But fortunately, that feeling of shame
when I started using a cane,
was worried about what people would think of me,
was, over time, replaced with a feeling of confidence
about being able to get around safely.
And the shame started to go away,
and it was really replaced
with a feeling of independence and confidence.
Thanks, Ed.
It's like, I had the same experience
in switching from cane to guide dogs.
And I think two factors.
One was I felt more equipped
and I was ready to be in public.
I had come to terms a little bit more with my vision loss
by the time I trained with my first guide dog.
I'm on my third now.
And the other factor too,
and it's kind of selfish, it may be silly,
but I think it does relate to the sensitivity
to the perception of the public of you,
which is kind of like where, in certain respects,
shame comes from, is that dogs are cool.
And I was living in Philadelphia
at the time I switched from the cane to the dog.
I was commuting by the regional rail.
And the difference in the reception that I got every morning
when I would step onto the train was drastic
between the cane and the dog.
With the cane,
people just kind of buried their noses
a little bit deeper into their newspapers.
But with the dog, it was, hey, come on over here.
This is really cool.
So I don't like to admit
that other people's perception of me does matter,
but it's a rare person that doesn't.
It is a rare person indeed.
And just so you know, I never thought dogs were cool
until I got a dog.
Now they are super cool. (laughs)
You know, and I don't know, either Jeff or Ed,
whoever wants to kind of chime in on this,
but as we're talking about these moments
that can possibly lead to shame,
you know, I've often heard folks talk about the idea
of having to ask for help can be really difficult,
especially when you're kind of new to vision loss
and trying to figure all this stuff out.
And, you know, I've heard people even share
that sometimes they feel like they're a burden.
And I'm wondering, have you guys ever experienced
something like this or has asking for help
ever led to feelings of shame for you?
And whoever wants to jump in, Jeff or Ed.
As you said in the beginning,
it was more difficult for me to ask for help
'cause it wasn't something I did a lot of.
So it was a new thing for me to ask for help.
And that took some getting used to,
you know, in how I felt about myself
and how I was concerned about how others felt about me
if I was to ask for help.
You know, even before my vision loss,
I was not someone who really liked to ask for help.
And even now, I will do everything I can
for myself, you know?
And the main thing that I ask help for nowadays
is rides to go places.
But I think still reluctant to ask for help,
particularly from people who I don't know.
It's a lot easier for family and friends
who, you know, I know and trust, and they know me
and what my abilities are.
Yeah, and I think that's a really good question,
a really good topic because I think
that over the 36 years or so that I've lived with RP,
I've struggled at different times
to accept the level of dependence
to which I am able to submit myself.
And there's a pejorative word right there,
submit myself, you know?
And just to go back a bit in terms of what Ed had said,
we are in a culture
that values self-reliance, and independence,
and pull yourself up by your bootstraps,
and just snap out of it,
and all the phrases that go by that.
So it was a leap to ask for help.
And although this may not be fair or totally accurate,
I think in this culture, especially with men,
that big boys don't cry, you know, and so on,
it makes it rather difficult.
And so I think it may be beyond culture,
it may be deeper into our makeup,
but yeah, asking for help is,
depending on how you interpret it,
putting yourself in a one down position.
And one thing that I learned recently was,
there's a term called mitzvah,
M-I-T-Z-V-A-H, I believe.
And it's defined as the, when you grant the opportunity
to another person to be helpful
without feeling inferior or dependent.
And that's kind of put a new slant on things for me
in terms of asking for things.
It's like giving somebody else the opportunity.
That's a really cool way to put it, Jeff,
giving somebody else the opportunity.
But I think you're right.
I agree with you.
I think that there are these cultural norms
that we're meant to, you know, kinda live up to.
And that can be challenging sometimes.
And I also think, you know, our society
is really kind of built for those without disabilities.
And I think maybe
what perhaps you're talking about a little bit
is this idea of, you know, being viewed
as different in our society
can lead to these negative self views
or even, you know, oftentimes feelings of shame.
Do you think that this has changed over time as a society?
And maybe even for you personally,
you know, in your own life, has this changed over time?
Ed, I don't know if you wanna go ahead and share first.
Sure.
I do think, to some extent, society's views have changed.
In my lifetime, I think there's probably more awareness.
And I think some of that comes through media
and, you know, maybe things that we see on TV and movies,
where people maybe have a little more of an awareness
about vision loss.
But on the other hand, I think you can only get
a limited view from that.
I think it's really from repeated exposure
to someone with vision loss or other disability over time
where your views really change.
So I think that, yeah, there have been improvements,
but I think there's more
that we can all learn about differences.
I agree, yeah.
Jeff, how about you?
Has this changed over time?
And maybe even for you personally,
have you seen it change in your own life?
Well, you know, I mentioned earlier
that I enjoyed photography during my sighted era.
And there was a real iconic black and white photograph
of a woman who's probably in a seated position
propped up against a brick wall.
She has obvious visual deficits in terms of,
even cataracts or whatever.
She's rather shabbily dressed.
And she has a sign around her neck from a string
that says blind.
And this was long before I had diagnosis
and any vision loss.
And I was struck by what an iconic photograph that was
and how much that said.
And I think, yes, we live in a sighted society,
and there's no way to get around it.
So, I mean, it's so ingrained.
I had a teenager once
who was just been diagnosed with RP come and say,
"I think I can put up with the eyesight thing,
but right now, is it gonna make me look different?"
There was so much invested in him
with maintaining his identity within the sighted community.
And, you know, I mean, it's obvious
that different perceptions or different reactions
hit at different times.
A teenager is mostly worried
about whether they're gonna fit in
and whether they got the right clothes.
And as Ed said, you know, he could cover his hearing aids
with the length of his hair and stuff like that.
So it really takes a lot of constant vigilance
and bringing attention to people that it's not a negative.
And I imagine that having this knowledge
that most people either consciously
or unconsciously view any change,
any disability, anything, this is a tragedy.
And there are probably, you know, that gets internalized
if you grow up with that.
And if you haven't experienced vision loss before
and suddenly you do, there's still all of these things
that you've absorbed over time
just because it's ingrained
to think of difference
as perhaps tragic, or you're suffering from it, or whatever.
So I imagine that brings about
all sorts of feelings of shame.
And I just appreciate that both of you
have been willing to talk about times in your lives
when you've felt that,
things that made you look at yourself and think,
I feel like I'd rather hide this for a bit,
and then suddenly, you know, I'm ready to make this public.
So I guess as we wrap up
having talked about ways that we feel shame
in situations that bring that about,
are there some things that have helped each of you
to get past that
and not have those feelings anymore,
to just come to accept whatever this thing is
that made you feel shame initially?
Ed, let's start with you.
Okay.
You know, I would say that emotions that we have,
while we would like to think that we have control over them,
we really have very limited control over our emotions.
But what we can control a lot of times is our behaviors
and even act with those emotions.
So, for example, with shame and any other negative emotion,
you know, our tendency is want to avoid that feeling
and get rid of it.
But maybe a better approach is to,
you know, notice that feeling that we're having,
acknowledge it, and sit with it for a while.
You know, what we really, a lot of times, wanna do
is avoid that feeling and get away from it.
But a lot of times,
even though that might provide immediate relief,
when we ignore our pain, oftentimes it will last longer.
So if we can kind of sit with our discomfort for a while,
and sometimes I would even say,
you know, I probably wallowed in some of my emotions
as I was dealing with vision loss for a while,
but that allowed me to experience those emotions
without pushing 'em away.
And that helped me to move forward.
And, you know, some of the ways that you can do that
is by opening up and talking about how you feel.
And, you know, if that's difficult,
maybe writing about how you feel about what's going on.
And just recognizing that even with those feelings,
you can move in the direction that you want to.
For example, with the cane,
I was feeling shameful about having to start using a cane,
but I knew that I wanted to maintain my independence.
And that was important to me
so I moved in that direction
even though, in the beginning particularly,
I still felt that shame.
The other thing I would say is when you're doing this,
to take small steps.
Have compassion for yourself
because it's not gonna be a straight line
from point A to point B, that it's gonna take time.
You know, this is something I've dealt with
for many, many years
and continue to deal with to some extent.
And, you know, really focusing
on what I can do today here and now
and not worrying about the way things used to be
or worrying about what might happen in the future.
Thank you, Ed.
I really endorse and appreciate
all the different facets that you've covered.
I only have to add that shame is internalized.
And there are some internal processes that can be helpful
in terms of working on acceptance
and unconditional positive regard for yourself.
Give yourself a break.
You know, you're doing the best you can.
And it's like shame fosters
and flourishes in darkness.
And a couple of things externally,
it's important to keep up with your skills,
because that way, when you do reach the point
where you have to go out in public
or go under the scrutiny of people,
you feel more competent, you feel better about yourself.
And the other thing that's been helpful for me
is to find people who are going through the same thing
and can understand and empathize.
And I think the biggest thing for me
was to realize that maybe the best way
that I can cope with my vision loss
is to try, through whatever means,
to help others who are going through the same process.
Thank you.
Very well said, both of you.
And again, I just wanna say how much I appreciate
your willingness to come and talk about this stuff,
because it is a moment of vulnerability,
that it can be hard to be comfortable with.
It's easy to talk about things that make you happy,
it's probably less so to talk about things
that make you feel discomfort
in whatever shape that takes.
So again, thank you for agreeing to come
and join us and talk about that.
Any final thoughts before we wrap up?
Well, Rick, I just wanna say thanks again to
Ed and Jeff.
You guys, I really appreciate the time,
you know, spent on such a,
I think it's a really important conversation,
and just appreciate, you know, a start
to a really important conversation today.
Thank you.
Well, and I wanna thank you too, and Ed and Hadley
for giving us the opportunity
to bring this out in the open a bit.
And I would just say I, you know, have enjoyed
discussing this and appreciate the opportunity.
Thank you all so much.
And thank you for listening.
(lighthearted music)
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 podcast@hadley.edu.
That's P-O-D-C-A-S-T@hadley.edu.
Or leave us a message
at 847-784-2870.
Thanks for listening.