December 17, 2025 • 48 mins
What's obvious to us may not be so obvious to others. In this episode, we continue our conversation about the disparities between how we see ourselves and how others see us. The gaps in those perceptions often create misunderstandings and unmet needs and has an impact on our lives in ways that surprise even us. We get into some of the nuances of the disabilities that others can see and the ones they can't--like chronic pain. Along the way, we take some funny detours on time management and productivity.
Chapters
00:00 Exploring Identity and Disability
02:40 The Impact of Unmet Needs
05:39 Navigating Social Perceptions
08:38 The Complexity of Accessibility
11:32 The Role of Time in Disability
14:30 Embracing Slower Living
17:17 Invisible Disabilities and Their Challenges
20:21 The Intersection of Disability and Work
23:27 Coping with Chronic Pain
26:14 The Influence of the Pandemic on Work Culture
29:20 Rethinking Time and Productivity
32:07 The Future of Accessibility
35:00 Reflections on Identity and Experience
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Whatever it is, we try to just use that time to be more
present, to notice the things around me, to turn that time
into a gift because I can't justsail through it.
Hello and welcome to Looking Up From Here, a podcast adventure
(00:22):
where Angelique, Laura and I explore the all-encompassing
experience of living with a disability.
In this podcast, we delve into how disability influences our
interactions with the world around us and how the world
responds to us. Along the way, we share our
personal journeys and open up about how our lives and
(00:43):
identities have been shaped by our reliance on wheelchairs for
mobility. Thank you for joining us and our
guests for these heartfelt and often humorous conversations
where we hope you'll gain a deeper understanding of what it
takes to navigate life on wheelsand maybe learn something about
just living your best life, no matter what challenges you're
(01:03):
facing. Hi, I'm your host, Samantha
Geary. I was diagnosed with multiple
sclerosis in my 20s and have lived with its ups and downs for
over 30 years, including many levels of disability, and I've
used a wheelchair full time since 2020.
(01:25):
Hi, I'm your host Laura Halsey. I live in West Quirk in Ireland.
I was born with a condition called Spina Bifta and I have
been in a wheelchair for about 30 years.
Hi, I'm your host Angelique Laylay.
I used to perform as an aerial artist and I fell while I was
training. I was paralyzed from the hips
down. I've been in a wheelchair since
(01:47):
2012. You can learn more about us on
our website lookingupfromhere.com.
Thanks for joining us today. The last week we were talking
about changes in our physical capability, whether they be
sudden or gradual, forced us to look at what we can and can't do
(02:16):
through the lens of identity andhow we identify with the things
we are able to do. And then when those things are
taken away from us, how it changes how we see ourselves and
how we feel that we're seen by others.
I know that sometimes I'm surprised by the disparity
(02:37):
between how much it changes how I see myself and how little it
changes how other people see me.I mean, my grandmother, for
example, one of my grandmother'sactually said at one point, I
forgot you had Ms. And I was like, what?
Like I was. I have very conflicted feelings
about that. I've had people over the years
(02:59):
say, oh I, you know, I forget that you are disabled.
This happened to me a lot as a child and I had very conflicting
feelings about it. Yeah.
Right. Because sometimes you're like,
yay, because they don't see me as disabled.
And secondly, you're like, this is a big deal.
How can you possibly not, you know, have that part of your
(03:19):
calculus for me? I don't understand.
I'm so very ping ponging feelings about it.
I think I, how I feel about it is like, I think that I strived
for it, right, child? I think I went so that people
wouldn't know. And then when I became a
teenager and people would say it, I was so pissed off.
(03:43):
We go to a restaurant or go to aclub or something.
I don't know, when I was out with my friends and they'd be
like, oh, we went to this place.And then it would make sensible
and like, oh, Laura, I forgot. And I'd be like, so angry.
And then when I later on talks people over like, well, Laura,
you never talk about it and you never say it and you're never, I
(04:04):
would be thinking, well, isn't it obvious?
But then I really tried to activate so badly that I
actually overachieved in many ways right on this too.
Well, and now nobody knows that you have any needs in this
department. Right, that is.
Myself heard in many ways, but I.
I mean, are you supposed to be going, oh, look at me, I'm
(04:28):
disabled like every. Is that supposed to be part of
every? Conversation it was it would
have been good for me when we were going out to be like, oh is
that accessible or something which.
That's true. Never check and see if they have
a bathroom that. Which isn't, that's all I, I
regularly do, I think as a youngperson.
But at the same time, there was a payoff when I was very young
(04:50):
when people would say I didn't alter this.
I used to think that's great. I've done, I've done a really
good job of fitting in like I'vedone, right.
I've done the job that I really was set out to do.
But then when your needs don't get met, you feel sad, right?
Well, unmet needs is a huge topic, right?
I mean it kind of threads through a lot of our
(05:11):
conversations. I mean, almost every episode
we've touched that in some way of people not recognizing a need
and then also recognizing that we are not always good at
articulating them and that we dooverachieve at adapting to
situations. So we create the least
(05:34):
disruption for the people we're around.
And yet we're also frustrated and tired from having to to make
all those adaptations so. Well, I think for, I mean, both
of you guys have a different experience, but like for me,
because I was, I had it so young, every person who's young
(05:55):
tries to fish in. That's just a normal thing for
being a young person. So my fitting in was don't stand
out. Don't make it a big thing, like
fit in with all the other people.
And then when that over, I mean,essentially that overworked,
like it works so well. People.
Nobody noticed when I was a teenager or like mostly when I
(06:20):
was in my late teens and early 20s, nobody noticed.
And everybody spring me to places and be like, yeah, it's
up a big stairs. And I'd be like, really, you
know. But I had to realize that I had
never, ever, ever put my need forward about like this is this
is the thing. What I thought isn't it's, but
(06:41):
it's so interesting about being.I don't know how you guys feel
about this. And I always thought it was a
younger thing, but I always thought it was so visible that
no one could never, ever, ever not notice.
Yeah. But obviously they didn't.
Well, they noticed but. But isn't there this sense of, I
mean, it gets back to identity, like how they think of you in a
(07:05):
larger sense, right. And and who would want a
disability to be front and center if it didn't have to be
like it's nice to have the wholeof you considered and right, you
might have a disability. Doesn't mean you're like
universally not able to do a lotof things so well.
(07:27):
It's it's not just there's a balance to it, right that
they're. You said it's Samantha, and in
the last time we were talking, like you said, a very good
thing. What you said it's not invisible
because you feel like you stand out.
Right. And that was the thing I felt
like, don't they stand out massively?
How could you not know? Like I obviously stand out so
(07:50):
much to people that like everyone knows.
And then people were like, oh, well, we just didn't know.
And I'd say. What can I like?
Can I ask you like in terms of how things progressed for your
disability as you got older? Did things change in such a way?
I'm not going to ask. I wonder how I can ask this.
(08:10):
Well, did things change for you where things became more
difficult or more painful or? Yeah, or you just didn't want to
fit in as much. It was more important to have
the needs met. It became very.
Obvious in college years so likepost school, which I was when I
(08:33):
where I was really trying to fitin and really, really trying to
underplay it and then like when I left school went to college, I
was very comfortable. I was very comfortable with this
group of people, but I had gotten into a habit, I guess of
not saying it's this. And I remember getting invited
to an end of year thing and it being upstairs in a place I
(08:58):
could never get to and being really upset and really offended
because I was in this group of people that I thought that
really knew me. And really, I had had a really
couple of years of being really accepted into this group.
And I thought, how did they not know?
And my roommate was like, well, Laura, you've never ever, you've
never ever said it. Like never ever talk to them
(09:22):
about it. And she encouraged me to go
anyway. She was like, let's go anyway.
And we got somebody to help me up the stairs.
And then, of course, the guy whowas organizing was like, I'm so
embarrassed. And I'm so sorry.
And I just didn't think of it. But I remember talking about it
at that point. I mean, like, oh, wait, I
(09:42):
understand now that I have to express this need.
And I learned that in my kind ofmid 20s where I was like, OK,
it's not visible unless I make it, unless I make the need part
of it visible. Right.
Yeah, because it's visible when you're in the chair, it's very
visible, right? But.
They don't really know what all that means.
(10:03):
They just don't even think aboutit.
It's. Yeah.
So what I realized is that it looks obvious, but it doesn't
have it look obvious what you need.
Right. It's not obvious because it's
nobody's been in the situation. They have zero idea even about
things you just think would be so obvious.
Like we only have one Step 2 steps up into the house.
(10:26):
It's totally accessible, right? Or like, you know, whenever I've
talked about going to the lake with my friends, I mean, it does
seem like, well, if you can get to the toilet and there's a bed,
you know, if you can get around the bed, like those things seem
like they're that makes it accessible.
But I've never said because that, you know, those are things
(10:47):
I looked for myself, but I've never said there are so many
more aspects to make having an accessible actual vacation.
Like how does it actually feel like a a vacation?
And luckily I've found, you know, we like with MBS, we found
a couple places where you can actually go and have an actual
(11:11):
accessible vacation. That makes me feel like I
answered your question disingenuously in the sense that
so that happened to me in my early 20s and I probably got
into my mid 20s. Like I went through those years
quite angry about it and quite frustrated.
And I wasn't until I got into mylate 20s where I was like, it's
(11:33):
up to you. Like you've got, you've got to
be declarative and articulate about it has to be this way.
But there were two or three years where I was like, it
really pisses me off that you can't see it because it's
obviously glaringly obvious. And I used to be so annoyed.
I mean, they think they asked ifthey could get a ramp onto the
(11:54):
pontoon boat, like get a thing onto the pontoon boat.
They thought, they thought aboutthings.
People think about things. It's not like people don't.
It's just that there's so much involved, I think, in when you
are disabled and and you know, we're talking about being
(12:15):
disabled people, but what about,you know, people who are older
people who are elderly and and having to navigate this world
or, you know, women who have babies in strollers.
Like this is these are things. Yes, exactly.
These are things that are almostimpenetrable for for a pretty
(12:38):
big number of our society that nobody even thinks about an.
Accessible world helps everybodythose helps people who are
older. It helps people with children.
Like it helps a lot of people. Yeah, it isn't just people in
wheelchairs or whatever. So that that always frustrates,
you know, but it. Really helped us a.
(13:00):
Lot, yeah, enormous. When to friends was like
strollers now. And I'm like, isn't it terrible
you're now lifting strollers up?Nobody should be doing that in
the world that we're in now. People should see.
It's very strange to me that people don't see it.
(13:21):
Yeah. Yeah, But, you know, there's the
physical world where a lot of buildings, structures and
whatnot are just really old. And so even if society says,
yeah, we should make things moreaccessible structurally, being
able to do that is challenging. True.
I mean, I've traveled. I don't know like how it is in
(13:41):
the US, but I think in Ireland and England and places like
people use that as an enormous excuse for things.
Yes. Absolutely.
There's always this thing here like, oh, it's historically
builds a building and you're like, OK, but you could do out
the front and you could also putthe pavement outside of it.
Not like that. People have used that as an I
(14:01):
don't want people to own historical buildings for me, by
the way, I don't actually think they're nice as they are.
Like I'm happy to manage my way into an historical building.
I don't want the whole thing to be torn down.
But I think people have used that as an excuse not to do
anything to help. A lack of creativity?
(14:21):
Sure. To do anything, and I think
that's kind of really helped some people to not bother in in.
Well, and they've made other modifications to historical
buildings. Let's be, let's be clear so that
they could put, you know, so that they could have be somewhat
modern on the inside. Right.
(14:42):
So they could do that. We're veering.
We're veering into structural things.
And where we started was about identity.
Yeah. I just don't want us to have
endless number of conversations about how hard all those things
are because then we then our lane becomes one of complaining.
And I'd like it right. I'd like for us to be more
(15:04):
exploratory about the experienceas a as a a realm of discovery
and education and what not I. Agree.
So where we started going off wewere talking about unmet needs
which is really interesting point, but that sort of took us
off into that direction. And where we were starting was
(15:29):
how we are seeing in terms of identity.
And, and what I was saying initially from my experience was
that because I get a lot done and I have structured a life
where I can do a lot. I think some people literally
forget. They don't, they don't define me
(15:50):
that way, which is good. And they forget about my
disability, which is part of my,they don't see it as part of my
identity. And I like that, and I but I
also don't want to be made to feel like having it part of my
identity is a bad thing in some way.
(16:14):
Right. Yeah, yeah.
Like that, that, that's some sort of that it's so negative.
Sure, there are a lot of negative things around having a
disability, but having a disability in and of itself is
not a value judgment on who you are.
It's just part of a constellation of qualities that
you have. Just not about being negative
(16:38):
though I I struggle with how much space it's supposed to take
up. Right, that's a good way to put
it. Yeah, different days, except
different amount of space. Yeah.
I struggle with this whole time.Is this supposed to take up this
much space or it's I just I struggle with that as a
(17:01):
question. How about you, Angie?
Yes, and I've noticed. I was just going to say I
noticed that this last while, for example, you know, when I've
been feeling really overwhelmed emotionally, what is a big part
of that overwhelm? Not just like what what I'm
(17:22):
going through, but dealing with chronic pain as part of my
disability. And I keep forgetting that, you
know, like I will name it like in therapy, I'll be like, well,
I have work and then I, you know, I'm dealing with my dad
and then, you know, and he's like, well, what about what
about the chronic pain? And I was like, I forgot and I
(17:45):
can't. And yet that's the, the big
thing that I deal with all day long.
And especially when it's hurricane season and the
barometers just like off the charts all over the place.
It for some reason it just gets worse.
I'm or I don't know, it's always, it's always.
(18:05):
You shouldn't blame it on one thing, but I'm just feeling that
sense of that. That's never, I never give it
the credit that it needs, You know, where I can just say to
even my boss like I need, I needa little time because this is
(18:28):
taking a lot out of me. It's 40% almost.
Maybe how you're feeling? Sometimes, yeah.
Yeah, I believe that. And what I think is powerful
about what you just said is that's an invisible disability,
(18:48):
right? There's a lot to disability that
is invisible to the eye. Yeah.
And I think a lot, a lot of our frustrations actually sort of
center around those invisible things that people can't see,
they can't quantify. Even we have a hard time
(19:12):
quantifying them. Just our energy.
How much of our energy goes intothe obvious and therefore is
depleted? Right.
Even even, you know, and then you add pain to that.
There's so much that gets, there's so much stress on the
sort of entirety of the system, if you will.
(19:34):
I said 40% and that's probably on a good day with people.
Well, I'm just thinking about people who live with chronic
pain and they'd probably be like.
Don't. You have good days and bad days,
but yeah, exactly. Exactly.
(19:56):
And yet I think that there's always this part of you that
like is afraid of having it be part of your identity.
Absolutely. You know, because I want to be
able to let it go at the drop ofa hat.
Like what if somebody comes along and says I can cure this?
And what if I'm afraid? That's been something I've
thought about, Like what if I'm attached to this pain?
(20:18):
What if I become attached to it and I can't let it go?
I thought about that. You'll be able to let it go.
Maybe you read this out crazy. No, but that's no.
But I get it. I get it because you live with
it so long, it's like you you'vegrown a new appendage.
You know, it's like, wow, yeah, we're going to take this away.
I don't know. The thing that I think about
(20:40):
because I, I mean, I have a certain amount of pain, but it's
not like like you live with Angie, but like the thing I
think about is I blame, it's my benefit for everything.
Like it's, it's, it's a wonderful built in system for
blame. Like I blame it for being tired.
(21:01):
I blame it for a bad day. I blame it for things that
didn't work out. It's like my built in thing to
blame and like there are probably other things that I
should blame for, you know what I mean?
Like I'm like, what if I didn't have this and what would I
blame? You know what I mean?
That's such a good question. I really blame it for a lot of
(21:23):
shit that and some of it's probably not.
It's false. I'm like but it's a built in
blame system that I. It makes me laugh because it
reminds me when my son was little and he didn't want to do
something and he had a lot of like peer pressure on him to do
it. He would either sort of take me
(21:44):
aside or call me or something. And he'd be like, mom, you know,
they're going to ask me to do this and I want you to say no.
And I've been OK, all right. And I realized that I was like
the built in. I was, I was his protection for
not having to do the things thathe didn't want to have to do.
(22:06):
And so sometimes disabilities like that, sometimes it's like
that. Oh, the disability says no, you
know, it's just sort of this permission.
I often think like, what would Iplay in if it wasn't?
Right, right. You know, we all need.
It's like the mom who will step in and and put a kibosh on it.
(22:28):
And it has gotten me out of doing some things that I didn't
really feel like doing too so. Then what would I blame?
It's true. It's true.
We would find something else. I find that I'm I'm learning.
I'm learning. I was so hell bent on not doing
(22:49):
that, that I have not always been attuned to the things that
that I should be in terms of my energy level.
And why not? Because I just wasn't going to
blame it on the Ms. And so I feel like just recently I'm
(23:13):
starting to be like, oh, all right, yeah, I'm a little more
tired. Or I, you know, I'm, I'm feeling
my way into all of the differentthings that are probably pretty
closely related to issues aroundthe disability and the fatigue.
And I don't think I can deny that it's part of part of the, I
(23:36):
think. I probably have the opposite
issues that like I I there are probably things that in the
world that make you tired, right, that are not by Bifley's
fault. It's like Jay Monster's like,
well, you've been you've been like very well, Laura, you've
been out like doing things for three or four.
Like anyone would be tired and I'm like, no, well, I really
(23:59):
think it's this system like no, anyone would be tired after
doing that. I have to check myself that I
don't blame especially tirednesson it.
Like you can just. But it's interesting because you
also, as you start to age and I'm quite a bit older than you,
they, you know, is it age or is it Ms. Is it?
(24:22):
And then, and then you have thatsame sort of pushing and be
like, I used to be able to stay up until whenever, you know, And
now my husband and I joke about like, who's going to fall asleep
faster? Oh, it's 9:00, can we go to bed
now? And we know we can joke about
it, but there's still a little bit like, OK, I'm always sort of
really, I know why he's tired because he goes out and runs
(24:44):
about the world for 30 miles a day.
But why am I so tired? But sometimes is because
emotional things or things you were doing all day, like it's
not always the thing I always blame it on.
But you have to also, I mean, all right, so it's not maybe
directly responsible, but maybe indirectly there could be
(25:05):
something that goes along with it, like maybe not getting
enough sleep because of having to deal with pain or absolutely,
you name it. All the things that take longer
to do because you're dealing with a disability.
I mean cooking for example, likeI have recipes that are like,
(25:26):
oh, this is only an 8 minute recipe and then an hour later
I'm like really 8 minutes because I'm tired.
There are definitely things likethat that I've given up because
I just like. This is just too annoying.
Like the fact that it's not easyand it takes a lot of time.
Now just screw. It well, I just accepted that
(25:46):
everything takes me longer. Yeah.
OK, but I'm still chronically late because I have never
figured out that it takes me so much longer.
You know, like I don't. I'm not necessarily chronically,
but I still like we we have a joke that like I'm always 10
minutes late for everything and.That's how you are.
(26:08):
That is. That is considered chronically
late. That is the definition of
chronically late. I genuinely believe, well,
that's your sea in Ireland, that's like.
That's actually on time. That's cultural.
And, and I genuinely believe it's going to take me 5 minutes
(26:29):
to do everything. And it's not, it's not going to
take me 5 minutes to do, Yeah. Do you know what I just
realized? That's where I get it.
I'm half Irish, I'm half Indian.Indian time.
I'm Irish and my mom was always like that, no.
One thinks the 10-15 minutes late in Ireland is late.
(26:50):
I think it takes me 15 minutes to get everywhere.
I leave 5 minutes later than I'msupposed to and it never takes
15 minutes to get anywhere. You know what it is with me?
I, I never, I'm not like unbelievably late for stuff.
But what I don't ever factor in is so I had arrived somewhere in
(27:11):
my car in like the car park and I never factor how long it's
going to take me to get out of my car.
I think my time is me driving tomy the parking space.
Arriving to the parking space, going.
To take you 10 minutes or so to get your wheelchair out of this
car. Like I will text my friends and
(27:31):
be like I'm in the car park and they're like, OK, like you're
meant to be here now, but like it's going to take you another
15 minutes to be here. Like I just think arriving there
is my on time and I never accepted me getting my
wheelchair out of the car which sometimes literally can take 5
(27:52):
minutes and sometimes can take 1520.
Like it depends on the date veryvery much.
And it would be very much resistant, I know I am to
getting there 15 minutes quote UN quote early to give myself
that bumper. No, I've never done that.
I've never done that right? Like it doesn't even calculate.
Like why would I get there 15 minutes?
(28:13):
I'm going to get there at 2:00 for 2:00, but I won't actually
see anybody for 1520 minutes. If something I resent about
that, that's the bit that takes me.
I'm like, I'm here. Like I'm here and they're like,
no, but you're not here. And I'm like, OK.
No, but I. Tell you, I tell you what would
get me there earlier? Shopping.
(28:35):
Yeah, yeah, I can be early for something if I really.
Would get me there. Earlier I never leave for public
transport, by the way, because Iknow it's going to leave
without. Me.
That's right. Exactly.
Which means you can be on time for something, right?
But you know what I mean? It's like.
I do know what you mean. My father used to be brutal
(28:55):
about that. If he said we were going
somewhere and he said to be ready a certain time and you
weren't ready, he would just leave.
So it definitely trained us to be ready when it was time to be
ready. But I've watched.
An I watched an Oprah show aboutthis once, and you know, I used
to get all my information from Oprah.
(29:16):
That's. What I grew up getting.
In. Love with that about men, about
everything. They always tell you who who
they are right away. I've taken a lot of information
from Oprah over the years. Yeah, so, but what?
Because I was always late and I'm, I will say I have gotten a
(29:37):
little bit better. It's gone up and down.
It was better until I became paralyzed.
And then it got worse. And I'm trying to get a little
bit better. But the thing that came out was
it, it's an arrogance because you think your time is worth
more than theirs, right? People that are waiting for you.
And I was like, oh, what? Like, oh, no, like, I didn't
(29:59):
like that never occurred to me, you know.
But when I started thinking about it as I was going about my
time, I was realizing like, I'm just plodding along doing
things, and then something will come up and I'd be like, oh, I
better get this one thing done. And it would take a little bit.
(30:20):
So I was rethinking that My timewas worth more than the person.
When I challenge that a little bit, I think like for example,
if I look at myself like that's the bit that I don't factor in.
So it's almost like why it's important for this podcast to
say it is that I don't factor the things about my disability
(30:40):
in time. Like I'm like, it will take you
15 minutes to get your chair outof the car.
Don't pretend that that's not going to like I think my time is
regular time and it's not is this great thing that I learned
about, which is they call crypt time, which people can look up.
It's like a whole other thing. What is?
(31:01):
Maybe we'll talk about it later.But I think I love it already.
Right, which is like as it is with a person like it's just
it's a different sense of like it takes you longer to do
certain things and I think somewhere I never wanted to
accept that. And so I, they're arriving in my
(31:23):
car at the right time was like, well, I'm here.
And but they're like, no, but like, it's going to take you
longer to do the thing. And I I think somewhere I don't
want to accept that I'm like. Absolutely not.
We do not want to accept that. Yeah, OK.
This says crypt time is a concept that challenges
normative, normative normative time by acknowledging how it's
(31:47):
stabled and chronically. I'll individuals experience and
navigate time differently, oftenneeding more time for tasks due
to their bodies or minds. It didn't cut it.
Yeah, that's just that's just the overview.
But I also have to say that like, forget the fact that
sometimes you go to the bathroomand you're thinking that you're
(32:10):
just going in for like a 5 or 10minutes and you are ending up in
there. For longer.
Not to be indelicate, but 40 youknow so.
Yeah, you just, you make an Irish exit.
That's right. You just don't know.
So you could be getting ready toleave the house.
(32:30):
You're like, OK, I'm going to leave the house and in 10
minutes and you're not. Well, it's like you say it's you
don't know, the other day I was supposed to go to the gym and it
was really wet. Like, I mean, sheets of rain,
really, really, really heavy rain.
And I'm going to get really wet going out in this.
I'm going to get really wet going to the gym.
And I texted him and I was like,I don't think I'm up to it.
(32:53):
And he texted me back and said, OK, I get it because we've just
moved into that season and I'm just psychologically not ready
for it yet. Like, I know that's what winter
is going to be now, but I'm justnot there in my mind yet.
And he was like, yeah, I get it.Because going out in the summer
as a person, getting into your car or getting into transport
(33:15):
would as is a very different thing than getting in in the bad
weather and the wet and the cold.
And I drag my wheelchair across my body getting into my car,
which means everything is dirty.Like right.
I I get, I get up in the morning, put on key clothes and
then by the time I get there I feel like telling people.
Muddy and wet. I really did put on king clothes
(33:36):
to come here, like I really did.And they're like, OK, Laura,
there is just things where I have to factor more time into
stuff that I don't accept I haveto factor in.
So it's different. I wonder about the the larger
experience of time too. Not just the question of being
late, but time is a larger concept because because
(33:57):
disability does tend to slow youdown.
And in slowing things down, you experience time differently,
right? And it's not just about being
late, it's about noticing the present moment in a different
way. I think I feel that that's
(34:19):
something I've been really striving for is up saying, OK,
whatever it is, whether it's just going to be slower for me
to to do something or if I have to take a longer pause.
Like I try to just use that timeto be more present, to notice
(34:40):
the things around me, to turn that time into a gift because I
can't just sail through it. I mean, for so many years
walking with a cane, like when Iwalk from place to place, like
every time I went anywhere, I was a walking meditation, right?
Because I had to think about it so in such a focused way that
(35:05):
there was no other place to be but where I was and what I was
trying to do. Yeah, you don't get done work
very fast. Right.
So there's like a meditative quality to it that you can.
I mean, I think that there can be frustration with it, but if
you stick with it, maybe reframeit, you can embrace that slowing
(35:26):
down and use it too. Well, what's what you like?
Go ahead. About not driving.
Right. Well, you said that, yes.
Talk about that. Just pretty much like what you
were saying. I mean, I like the fact that I
didn't have to be so aware of what everybody was doing that I
(35:47):
could just enjoy the scenery, that I could even get lost in a
podcast or audiobook, that I could meditate if I wanted to.
Right. That I could have a conversation
with my driver like, you know, like there were things I didn't
have to be at the mercy of whatever my immediate emotion
(36:11):
was because I was driving on on a road that was annoying.
And at least that's how I was. There are some that would say I
was not the best driver, but I'mnot going to worry about.
That to differ. To differ, let's shelf that.
They're wrong. Actually, they're wrong.
They're wrong. Thank you.
(36:33):
I really enjoyed not driving forthose reasons.
I could breathe, I could just relax into it.
Yeah. And I feel that there's in my
being out here where I live now and not traveling, I've really,
(36:54):
really attuned to the seasons. I'm really attuned to my
environment in ways that are deeply meaningful to me and that
I may not have given myself. I almost certainly would not
have given myself permission to have this different experience
(37:16):
of the world that is slower paced and very much of A place
if I hadn't begun using a wheelchair and and slowed things
way down. And so in a sense, it's enhanced
my sense of time because I am experiencing time through all of
the different seasonal things, you know, whether it's noticing
(37:40):
what birds are coming into my woods and my soundscape, which
changes the time, noticing how the light changes, which windows
the sun comes through, noticing the leaves changing because I
live in a deciduous forest. I don't know.
I have a weird My whole sense oftime has shifted in the last
five years. Yeah.
(38:03):
Yeah, I get that. And some of that too.
My husband says that too. And there's nothing wrong with
them. But it is.
He's largely retired now. And so all my retired friends
and like, I was talking to my uncle the other day and he's
like, yeah, it doesn't matter ifit's Monday or if it's, I don't
know what day it is and it doesn't matter.
(38:24):
And I was like, yeah, I know. If you look back at history and
you look at like, not to get tooheavy, but of like the
industrial revolution and how they essentially put an alarm on
for everybody in the town to make sure they were all up to
work, right? That's how we got into this
nest. Like there's a reason that we're
(38:47):
all doing this. Like it's a whole sort of nine
to five. I'm not necessary.
I'm not saying that it works forsome people.
All I'm saying is that it doesn't work for everybody.
And the pandemic made us think about the fact that not
everyone's system works the sameway and.
Right. I think that's a really, and you
know, the whole conversation we've been having about
(39:09):
neurodivergence is like that. Not everyone's brain is weird
the same way. And we all should have a bigger
conversation about that because it's like we're not all built
the same way and not everyone who's disabled is built maybe
differently, but also all three of us have a different
sensibility. So like, I just think that part
(39:31):
of reason why we're doing the podcast is like there's a nuance
to it. I just think people think, oh,
well, yeah, that's what we do. That's the system.
And we're like, well, is it the system?
And is it? Is the system working?
To the right system, girls, don't you feel?
I mean, I'm sure we've all felt this push to fit into that
(39:53):
system. Oh, I've told.
Right. But I still feel massively I've
been I've been retired a long time and.
But I still have the sense of what should be happening Monday
through Friday and having weekends off.
It's completely illogical. But it's it's like so wired into
(40:14):
my sense of time, so wired. I can't shake it right?
I just don't know how to shake it.
Yeah, I'm have the same way. Like I don't have to teach this
Saturday and I'm like, I have the weekend off, right?
Wait a minute. If I really thought about it, I
could give myself a weekend probably at some point in the
(40:36):
middle of the week too, because I can work whenever I want to.
I mean, I have definite teachingdays, but you know, the rest of
my work schedule is my own. And it's just, it's just the way
I think about it, it's just the way it's been sort of bred into
me. I am horrified because I've been
(40:58):
reading all these articles lately about what's it called?
It's 9996 or something. It's like people are working
9:00 to 9:00 sick days a week and that's like the norm.
I know for the like 996, I thinkthat's what it is.
I I'm probably getting the number wrong, but there's
(41:20):
something to that effect that that's the people are putting
that in job notices that that's what's expected and 9:00 to 9:00
six days a week or you're not going to make it in this job.
And I just think that is the most screwed up thing I have
ever heard. Like what is happening that that
(41:42):
would be considered an OK way for people to function in the
world? Well, it's also like all three
of us on the pot are like, I mean, I feel a bit weird even
saying this and like, it makes me feel slightly uncomfortable
because I'm, I'm only getting toterms with this idea.
But like if you listened to yourbody better like, we would all
(42:08):
realize that those ideas are notgood, right?
Right. And we all have a different
disability on this podcast and we've all had a very different
experience of it. If I listen to my body like I
did the 9:00 to 5:00 for a long time, and I don't get me wrong,
I enjoyed parts of it. I liked the people, liked the
(42:29):
socialization of it, But there was an exhaustion that I found
really was too much from my bodyto withstand.
And I, I suppressed that and pushed that down for many, many
years. And it's like, if, if you really
listen to that, your system, there's something in the overall
(42:49):
system of it that just doesn't work.
Like everybody thinks that no matter whether you're disabled
or not, like there's just something in that system that's
not quite right. Well, there's a lot.
Of Dent. Yeah, there's a lot in that
system that's not right. And I think what you're about to
say is. What the pandemic did for me,
(43:11):
like it allowed, it freed me a little bit from that.
Whenever I was before my injury,I, my whole goal was and was to
not work in the system. I mean, I, I worked, I was
self-employed. I didn't want anything to do
with, you know, being employed and I loved it that way.
(43:34):
But then after my injury, I liked the safety of not even
having to worry about the tax implications of being
self-employed. So, you know, then I did that.
But but then when the pandemic happened, I was like, oh, I love
this. I work from home.
(43:55):
I wake up when I want to. I work happens so much faster
because I'm not talking to everybody and I just sign in for
meetings and that's it. And then I just relax.
It was, I mean, the best thing that's ever happened to me, I
have to say still is. Silver Linings, you know.
(44:16):
Because I'm still working from home.
Right. Yeah.
And so I mean from the pandemicsor many people across the world.
And but it, I think regardless of whether that works or not for
you, is that what I'm most happyabout is it threw up this
question of is this one system right for everybody?
(44:36):
Right, right. And some of those people threw
up the question. They, they didn't even want that
question anymore. Like after a little while they
were like, wait a minute, I wantto see you guys back here
because maybe you're not being as productive as you could be,
But that what people realized was that everybody was being
just as productive. Well, I have a friend who has a
(44:59):
disability also. And.
She she has a disability and shewas asking for ferried hours and
she's extremely hard worker. And they were like, no, you
can't have it. No, you can't have it.
No, we can't change the system. And then the pandemic happened
and basically they changed the system overnight and they
(45:20):
continued to change the system. And I remember saying to her, so
it can be done, but they just don't want to do it for you.
Hey, before we go, we want to tell you about a very special
organization that brought the three of us together five years
(45:42):
ago. It's called Mind Body Solutions.
They love. They offer live online adaptive
yoga classes, a YouTube library,unique student only gathering
spaces, and special live events hosted by founder Matthew
Sanford. There's no fees to participate
and no yoga experience required.At MBS, you can connect with
(46:02):
others who have disabilities andreconnect with yourself.
That's their mission, to help people live more vibrantly and
more connected, both in mind andbody.
MBS has helped each of us discover new ways to live, work,
move, and simply be in the bodies we have.
And they can help you too. So if you're listening and
(46:25):
living with a disability or knowsomeone who is, check out their
website at mindbodysolutions.org.
It's free, it's hopeful, and there's room for everybody.
That's mindbodysolutions.org. You can also connect with them
through our Looking Up fromhere.com resources page.
(46:48):
Your Internet went out at the end.
Oh my God. I know it's really hateful
today. It's hateful.
And Laura, do you want to redo it?
You had one little glitch. Yeah, I made one mistake.
With the word OK, but that was otherwise it was really good.
I think we're getting better with every take I was.
Trying to cover it but I was like no, it's really.
(47:09):
No, I'm not going to restart therecording.
I'm just going to start from thetop and we'll just do it all the
way through. That way I have all of this on
one thing and I can pull and paste OK.
OK. So then I will do a countdown.
Hey, before we go, we want to tell you about a very special
(47:29):
organization that brought the three of us together five years
ago. It's called Mind Body Solutions.
They offer live online adaptive yoga classes, a YouTube library,
unique student only gathering spaces, and special live events
hosted by founder Matthew Sanford.
There's no fee to participate and no yoga experience required.
(47:50):
At MBS, you can connect with others who have disabilities and
reconnect with yourself. That's their mission, to help
people live more vibrantly and more connected, both in mind and
body. MBS has helped each of us
discover new ways to live, work,move, and simply be in the
bodies we have. And they can help you too.
(48:11):
So if you're listening and living with a disability or know
someone who is, check out their website at
mindbodysolutions.org. It's free.
It's hopeful and there's room for everybody.
Thatsmindbodysolutions.org. You can also connect with them
(48:31):
through our lookingupfromhere.com resources
web page. Thank you.
Whatever it is, we try to just use that time to be more
present, to notice the things around me, to turn that time
into a gift because I can't justsail through it.
Hello and welcome to Looking Up From Here, a podcast adventure
(00:22):
where Angelique, Laura and I explore the all-encompassing
experience of living with a disability.
In this podcast, we delve into how disability influences our
interactions with the world around us and how the world
responds to us. Along the way, we share our
personal journeys and open up about how our lives and
(00:43):
identities have been shaped by our reliance on wheelchairs for
mobility. Thank you for joining us and our
guests for these heartfelt and often humorous conversations
where we hope you'll gain a deeper understanding of what it
takes to navigate life on wheelsand maybe learn something about
just living your best life, no matter what challenges you're
(01:03):
facing. Hi, I'm your host, Samantha
Geary. I was diagnosed with multiple
sclerosis in my 20s and have lived with its ups and downs for
over 30 years, including many levels of disability, and I've
used a wheelchair full time since 2020.
(01:25):
Hi, I'm your host Laura Halsey. I live in West Quirk in Ireland.
I was born with a condition called Spina Bifta and I have
been in a wheelchair for about 30 years.
Hi, I'm your host Angelique Laylay.
I used to perform as an aerial artist and I fell while I was
training. I was paralyzed from the hips
down. I've been in a wheelchair since
(01:47):
2012. You can learn more about us on
our website lookingupfromhere.com.
Thanks for joining us today. The last week we were talking
about changes in our physical capability, whether they be
sudden or gradual, forced us to look at what we can and can't do
(02:16):
through the lens of identity andhow we identify with the things
we are able to do. And then when those things are
taken away from us, how it changes how we see ourselves and
how we feel that we're seen by others.
I know that sometimes I'm surprised by the disparity
(02:37):
between how much it changes how I see myself and how little it
changes how other people see me.I mean, my grandmother, for
example, one of my grandmother'sactually said at one point, I
forgot you had Ms. And I was like, what?
Like I was. I have very conflicted feelings
about that. I've had people over the years
(02:59):
say, oh I, you know, I forget that you are disabled.
This happened to me a lot as a child and I had very conflicting
feelings about it. Yeah.
Right. Because sometimes you're like,
yay, because they don't see me as disabled.
And secondly, you're like, this is a big deal.
How can you possibly not, you know, have that part of your
(03:19):
calculus for me? I don't understand.
I'm so very ping ponging feelings about it.
I think I, how I feel about it is like, I think that I strived
for it, right, child? I think I went so that people
wouldn't know. And then when I became a
teenager and people would say it, I was so pissed off.
(03:43):
We go to a restaurant or go to aclub or something.
I don't know, when I was out with my friends and they'd be
like, oh, we went to this place.And then it would make sensible
and like, oh, Laura, I forgot. And I'd be like, so angry.
And then when I later on talks people over like, well, Laura,
you never talk about it and you never say it and you're never, I
(04:04):
would be thinking, well, isn't it obvious?
But then I really tried to activate so badly that I
actually overachieved in many ways right on this too.
Well, and now nobody knows that you have any needs in this
department. Right, that is.
Myself heard in many ways, but I.
I mean, are you supposed to be going, oh, look at me, I'm
(04:28):
disabled like every. Is that supposed to be part of
every? Conversation it was it would
have been good for me when we were going out to be like, oh is
that accessible or something which.
That's true. Never check and see if they have
a bathroom that. Which isn't, that's all I, I
regularly do, I think as a youngperson.
But at the same time, there was a payoff when I was very young
(04:50):
when people would say I didn't alter this.
I used to think that's great. I've done, I've done a really
good job of fitting in like I'vedone, right.
I've done the job that I really was set out to do.
But then when your needs don't get met, you feel sad, right?
Well, unmet needs is a huge topic, right?
I mean it kind of threads through a lot of our
(05:11):
conversations. I mean, almost every episode
we've touched that in some way of people not recognizing a need
and then also recognizing that we are not always good at
articulating them and that we dooverachieve at adapting to
situations. So we create the least
(05:34):
disruption for the people we're around.
And yet we're also frustrated and tired from having to to make
all those adaptations so. Well, I think for, I mean, both
of you guys have a different experience, but like for me,
because I was, I had it so young, every person who's young
(05:55):
tries to fish in. That's just a normal thing for
being a young person. So my fitting in was don't stand
out. Don't make it a big thing, like
fit in with all the other people.
And then when that over, I mean,essentially that overworked,
like it works so well. People.
Nobody noticed when I was a teenager or like mostly when I
(06:20):
was in my late teens and early 20s, nobody noticed.
And everybody spring me to places and be like, yeah, it's
up a big stairs. And I'd be like, really, you
know. But I had to realize that I had
never, ever, ever put my need forward about like this is this
is the thing. What I thought isn't it's, but
(06:41):
it's so interesting about being.I don't know how you guys feel
about this. And I always thought it was a
younger thing, but I always thought it was so visible that
no one could never, ever, ever not notice.
Yeah. But obviously they didn't.
Well, they noticed but. But isn't there this sense of, I
mean, it gets back to identity, like how they think of you in a
(07:05):
larger sense, right. And and who would want a
disability to be front and center if it didn't have to be
like it's nice to have the wholeof you considered and right, you
might have a disability. Doesn't mean you're like
universally not able to do a lotof things so well.
(07:27):
It's it's not just there's a balance to it, right that
they're. You said it's Samantha, and in
the last time we were talking, like you said, a very good
thing. What you said it's not invisible
because you feel like you stand out.
Right. And that was the thing I felt
like, don't they stand out massively?
How could you not know? Like I obviously stand out so
(07:50):
much to people that like everyone knows.
And then people were like, oh, well, we just didn't know.
And I'd say. What can I like?
Can I ask you like in terms of how things progressed for your
disability as you got older? Did things change in such a way?
I'm not going to ask. I wonder how I can ask this.
(08:10):
Well, did things change for you where things became more
difficult or more painful or? Yeah, or you just didn't want to
fit in as much. It was more important to have
the needs met. It became very.
Obvious in college years so likepost school, which I was when I
(08:33):
where I was really trying to fitin and really, really trying to
underplay it and then like when I left school went to college, I
was very comfortable. I was very comfortable with this
group of people, but I had gotten into a habit, I guess of
not saying it's this. And I remember getting invited
to an end of year thing and it being upstairs in a place I
(08:58):
could never get to and being really upset and really offended
because I was in this group of people that I thought that
really knew me. And really, I had had a really
couple of years of being really accepted into this group.
And I thought, how did they not know?
And my roommate was like, well, Laura, you've never ever, you've
never ever said it. Like never ever talk to them
(09:22):
about it. And she encouraged me to go
anyway. She was like, let's go anyway.
And we got somebody to help me up the stairs.
And then, of course, the guy whowas organizing was like, I'm so
embarrassed. And I'm so sorry.
And I just didn't think of it. But I remember talking about it
at that point. I mean, like, oh, wait, I
(09:42):
understand now that I have to express this need.
And I learned that in my kind ofmid 20s where I was like, OK,
it's not visible unless I make it, unless I make the need part
of it visible. Right.
Yeah, because it's visible when you're in the chair, it's very
visible, right? But.
They don't really know what all that means.
(10:03):
They just don't even think aboutit.
It's. Yeah.
So what I realized is that it looks obvious, but it doesn't
have it look obvious what you need.
Right. It's not obvious because it's
nobody's been in the situation. They have zero idea even about
things you just think would be so obvious.
Like we only have one Step 2 steps up into the house.
(10:26):
It's totally accessible, right? Or like, you know, whenever I've
talked about going to the lake with my friends, I mean, it does
seem like, well, if you can get to the toilet and there's a bed,
you know, if you can get around the bed, like those things seem
like they're that makes it accessible.
But I've never said because that, you know, those are things
(10:47):
I looked for myself, but I've never said there are so many
more aspects to make having an accessible actual vacation.
Like how does it actually feel like a a vacation?
And luckily I've found, you know, we like with MBS, we found
a couple places where you can actually go and have an actual
(11:11):
accessible vacation. That makes me feel like I
answered your question disingenuously in the sense that
so that happened to me in my early 20s and I probably got
into my mid 20s. Like I went through those years
quite angry about it and quite frustrated.
And I wasn't until I got into mylate 20s where I was like, it's
(11:33):
up to you. Like you've got, you've got to
be declarative and articulate about it has to be this way.
But there were two or three years where I was like, it
really pisses me off that you can't see it because it's
obviously glaringly obvious. And I used to be so annoyed.
I mean, they think they asked ifthey could get a ramp onto the
(11:54):
pontoon boat, like get a thing onto the pontoon boat.
They thought, they thought aboutthings.
People think about things. It's not like people don't.
It's just that there's so much involved, I think, in when you
are disabled and and you know, we're talking about being
(12:15):
disabled people, but what about,you know, people who are older
people who are elderly and and having to navigate this world
or, you know, women who have babies in strollers.
Like this is these are things. Yes, exactly.
These are things that are almostimpenetrable for for a pretty
(12:38):
big number of our society that nobody even thinks about an.
Accessible world helps everybodythose helps people who are
older. It helps people with children.
Like it helps a lot of people. Yeah, it isn't just people in
wheelchairs or whatever. So that that always frustrates,
you know, but it. Really helped us a.
(13:00):
Lot, yeah, enormous. When to friends was like
strollers now. And I'm like, isn't it terrible
you're now lifting strollers up?Nobody should be doing that in
the world that we're in now. People should see.
It's very strange to me that people don't see it.
(13:21):
Yeah. Yeah, But, you know, there's the
physical world where a lot of buildings, structures and
whatnot are just really old. And so even if society says,
yeah, we should make things moreaccessible structurally, being
able to do that is challenging. True.
I mean, I've traveled. I don't know like how it is in
(13:41):
the US, but I think in Ireland and England and places like
people use that as an enormous excuse for things.
Yes. Absolutely.
There's always this thing here like, oh, it's historically
builds a building and you're like, OK, but you could do out
the front and you could also putthe pavement outside of it.
Not like that. People have used that as an I
(14:01):
don't want people to own historical buildings for me, by
the way, I don't actually think they're nice as they are.
Like I'm happy to manage my way into an historical building.
I don't want the whole thing to be torn down.
But I think people have used that as an excuse not to do
anything to help. A lack of creativity?
(14:21):
Sure. To do anything, and I think
that's kind of really helped some people to not bother in in.
Well, and they've made other modifications to historical
buildings. Let's be, let's be clear so that
they could put, you know, so that they could have be somewhat
modern on the inside. Right.
(14:42):
So they could do that. We're veering.
We're veering into structural things.
And where we started was about identity.
Yeah. I just don't want us to have
endless number of conversations about how hard all those things
are because then we then our lane becomes one of complaining.
And I'd like it right. I'd like for us to be more
(15:04):
exploratory about the experienceas a as a a realm of discovery
and education and what not I. Agree.
So where we started going off wewere talking about unmet needs
which is really interesting point, but that sort of took us
off into that direction. And where we were starting was
(15:29):
how we are seeing in terms of identity.
And, and what I was saying initially from my experience was
that because I get a lot done and I have structured a life
where I can do a lot. I think some people literally
forget. They don't, they don't define me
(15:50):
that way, which is good. And they forget about my
disability, which is part of my,they don't see it as part of my
identity. And I like that, and I but I
also don't want to be made to feel like having it part of my
identity is a bad thing in some way.
(16:14):
Right. Yeah, yeah.
Like that, that, that's some sort of that it's so negative.
Sure, there are a lot of negative things around having a
disability, but having a disability in and of itself is
not a value judgment on who you are.
It's just part of a constellation of qualities that
you have. Just not about being negative
(16:38):
though I I struggle with how much space it's supposed to take
up. Right, that's a good way to put
it. Yeah, different days, except
different amount of space. Yeah.
I struggle with this whole time.Is this supposed to take up this
much space or it's I just I struggle with that as a
(17:01):
question. How about you, Angie?
Yes, and I've noticed. I was just going to say I
noticed that this last while, for example, you know, when I've
been feeling really overwhelmed emotionally, what is a big part
of that overwhelm? Not just like what what I'm
(17:22):
going through, but dealing with chronic pain as part of my
disability. And I keep forgetting that, you
know, like I will name it like in therapy, I'll be like, well,
I have work and then I, you know, I'm dealing with my dad
and then, you know, and he's like, well, what about what
about the chronic pain? And I was like, I forgot and I
(17:45):
can't. And yet that's the, the big
thing that I deal with all day long.
And especially when it's hurricane season and the
barometers just like off the charts all over the place.
It for some reason it just gets worse.
I'm or I don't know, it's always, it's always.
(18:05):
You shouldn't blame it on one thing, but I'm just feeling that
sense of that. That's never, I never give it
the credit that it needs, You know, where I can just say to
even my boss like I need, I needa little time because this is
(18:28):
taking a lot out of me. It's 40% almost.
Maybe how you're feeling? Sometimes, yeah.
Yeah, I believe that. And what I think is powerful
about what you just said is that's an invisible disability,
(18:48):
right? There's a lot to disability that
is invisible to the eye. Yeah.
And I think a lot, a lot of our frustrations actually sort of
center around those invisible things that people can't see,
they can't quantify. Even we have a hard time
(19:12):
quantifying them. Just our energy.
How much of our energy goes intothe obvious and therefore is
depleted? Right.
Even even, you know, and then you add pain to that.
There's so much that gets, there's so much stress on the
sort of entirety of the system, if you will.
(19:34):
I said 40% and that's probably on a good day with people.
Well, I'm just thinking about people who live with chronic
pain and they'd probably be like.
Don't. You have good days and bad days,
but yeah, exactly. Exactly.
(19:56):
And yet I think that there's always this part of you that
like is afraid of having it be part of your identity.
Absolutely. You know, because I want to be
able to let it go at the drop ofa hat.
Like what if somebody comes along and says I can cure this?
And what if I'm afraid? That's been something I've
thought about, Like what if I'm attached to this pain?
(20:18):
What if I become attached to it and I can't let it go?
I thought about that. You'll be able to let it go.
Maybe you read this out crazy. No, but that's no.
But I get it. I get it because you live with
it so long, it's like you you'vegrown a new appendage.
You know, it's like, wow, yeah, we're going to take this away.
I don't know. The thing that I think about
(20:40):
because I, I mean, I have a certain amount of pain, but it's
not like like you live with Angie, but like the thing I
think about is I blame, it's my benefit for everything.
Like it's, it's, it's a wonderful built in system for
blame. Like I blame it for being tired.
(21:01):
I blame it for a bad day. I blame it for things that
didn't work out. It's like my built in thing to
blame and like there are probably other things that I
should blame for, you know what I mean?
Like I'm like, what if I didn't have this and what would I
blame? You know what I mean?
That's such a good question. I really blame it for a lot of
(21:23):
shit that and some of it's probably not.
It's false. I'm like but it's a built in
blame system that I. It makes me laugh because it
reminds me when my son was little and he didn't want to do
something and he had a lot of like peer pressure on him to do
it. He would either sort of take me
(21:44):
aside or call me or something. And he'd be like, mom, you know,
they're going to ask me to do this and I want you to say no.
And I've been OK, all right. And I realized that I was like
the built in. I was, I was his protection for
not having to do the things thathe didn't want to have to do.
(22:06):
And so sometimes disabilities like that, sometimes it's like
that. Oh, the disability says no, you
know, it's just sort of this permission.
I often think like, what would Iplay in if it wasn't?
Right, right. You know, we all need.
It's like the mom who will step in and and put a kibosh on it.
(22:28):
And it has gotten me out of doing some things that I didn't
really feel like doing too so. Then what would I blame?
It's true. It's true.
We would find something else. I find that I'm I'm learning.
I'm learning. I was so hell bent on not doing
(22:49):
that, that I have not always been attuned to the things that
that I should be in terms of my energy level.
And why not? Because I just wasn't going to
blame it on the Ms. And so I feel like just recently I'm
(23:13):
starting to be like, oh, all right, yeah, I'm a little more
tired. Or I, you know, I'm, I'm feeling
my way into all of the differentthings that are probably pretty
closely related to issues aroundthe disability and the fatigue.
And I don't think I can deny that it's part of part of the, I
(23:36):
think. I probably have the opposite
issues that like I I there are probably things that in the
world that make you tired, right, that are not by Bifley's
fault. It's like Jay Monster's like,
well, you've been you've been like very well, Laura, you've
been out like doing things for three or four.
Like anyone would be tired and I'm like, no, well, I really
(23:59):
think it's this system like no, anyone would be tired after
doing that. I have to check myself that I
don't blame especially tirednesson it.
Like you can just. But it's interesting because you
also, as you start to age and I'm quite a bit older than you,
they, you know, is it age or is it Ms. Is it?
(24:22):
And then, and then you have thatsame sort of pushing and be
like, I used to be able to stay up until whenever, you know, And
now my husband and I joke about like, who's going to fall asleep
faster? Oh, it's 9:00, can we go to bed
now? And we know we can joke about
it, but there's still a little bit like, OK, I'm always sort of
really, I know why he's tired because he goes out and runs
(24:44):
about the world for 30 miles a day.
But why am I so tired? But sometimes is because
emotional things or things you were doing all day, like it's
not always the thing I always blame it on.
But you have to also, I mean, all right, so it's not maybe
directly responsible, but maybe indirectly there could be
(25:05):
something that goes along with it, like maybe not getting
enough sleep because of having to deal with pain or absolutely,
you name it. All the things that take longer
to do because you're dealing with a disability.
I mean cooking for example, likeI have recipes that are like,
(25:26):
oh, this is only an 8 minute recipe and then an hour later
I'm like really 8 minutes because I'm tired.
There are definitely things likethat that I've given up because
I just like. This is just too annoying.
Like the fact that it's not easyand it takes a lot of time.
Now just screw. It well, I just accepted that
(25:46):
everything takes me longer. Yeah.
OK, but I'm still chronically late because I have never
figured out that it takes me so much longer.
You know, like I don't. I'm not necessarily chronically,
but I still like we we have a joke that like I'm always 10
minutes late for everything and.That's how you are.
(26:08):
That is. That is considered chronically
late. That is the definition of
chronically late. I genuinely believe, well,
that's your sea in Ireland, that's like.
That's actually on time. That's cultural.
And, and I genuinely believe it's going to take me 5 minutes
(26:29):
to do everything. And it's not, it's not going to
take me 5 minutes to do, Yeah. Do you know what I just
realized? That's where I get it.
I'm half Irish, I'm half Indian.Indian time.
I'm Irish and my mom was always like that, no.
One thinks the 10-15 minutes late in Ireland is late.
(26:50):
I think it takes me 15 minutes to get everywhere.
I leave 5 minutes later than I'msupposed to and it never takes
15 minutes to get anywhere. You know what it is with me?
I, I never, I'm not like unbelievably late for stuff.
But what I don't ever factor in is so I had arrived somewhere in
(27:11):
my car in like the car park and I never factor how long it's
going to take me to get out of my car.
I think my time is me driving tomy the parking space.
Arriving to the parking space, going.
To take you 10 minutes or so to get your wheelchair out of this
car. Like I will text my friends and
(27:31):
be like I'm in the car park and they're like, OK, like you're
meant to be here now, but like it's going to take you another
15 minutes to be here. Like I just think arriving there
is my on time and I never accepted me getting my
wheelchair out of the car which sometimes literally can take 5
(27:52):
minutes and sometimes can take 1520.
Like it depends on the date veryvery much.
And it would be very much resistant, I know I am to
getting there 15 minutes quote UN quote early to give myself
that bumper. No, I've never done that.
I've never done that right? Like it doesn't even calculate.
Like why would I get there 15 minutes?
(28:13):
I'm going to get there at 2:00 for 2:00, but I won't actually
see anybody for 1520 minutes. If something I resent about
that, that's the bit that takes me.
I'm like, I'm here. Like I'm here and they're like,
no, but you're not here. And I'm like, OK.
No, but I. Tell you, I tell you what would
get me there earlier? Shopping.
(28:35):
Yeah, yeah, I can be early for something if I really.
Would get me there. Earlier I never leave for public
transport, by the way, because Iknow it's going to leave
without. Me.
That's right. Exactly.
Which means you can be on time for something, right?
But you know what I mean? It's like.
I do know what you mean. My father used to be brutal
(28:55):
about that. If he said we were going
somewhere and he said to be ready a certain time and you
weren't ready, he would just leave.
So it definitely trained us to be ready when it was time to be
ready. But I've watched.
An I watched an Oprah show aboutthis once, and you know, I used
to get all my information from Oprah.
(29:16):
That's. What I grew up getting.
In. Love with that about men, about
everything. They always tell you who who
they are right away. I've taken a lot of information
from Oprah over the years. Yeah, so, but what?
Because I was always late and I'm, I will say I have gotten a
(29:37):
little bit better. It's gone up and down.
It was better until I became paralyzed.
And then it got worse. And I'm trying to get a little
bit better. But the thing that came out was
it, it's an arrogance because you think your time is worth
more than theirs, right? People that are waiting for you.
And I was like, oh, what? Like, oh, no, like, I didn't
(29:59):
like that never occurred to me, you know.
But when I started thinking about it as I was going about my
time, I was realizing like, I'm just plodding along doing
things, and then something will come up and I'd be like, oh, I
better get this one thing done. And it would take a little bit.
(30:20):
So I was rethinking that My timewas worth more than the person.
When I challenge that a little bit, I think like for example,
if I look at myself like that's the bit that I don't factor in.
So it's almost like why it's important for this podcast to
say it is that I don't factor the things about my disability
(30:40):
in time. Like I'm like, it will take you
15 minutes to get your chair outof the car.
Don't pretend that that's not going to like I think my time is
regular time and it's not is this great thing that I learned
about, which is they call crypt time, which people can look up.
It's like a whole other thing. What is?
(31:01):
Maybe we'll talk about it later.But I think I love it already.
Right, which is like as it is with a person like it's just
it's a different sense of like it takes you longer to do
certain things and I think somewhere I never wanted to
accept that. And so I, they're arriving in my
(31:23):
car at the right time was like, well, I'm here.
And but they're like, no, but like, it's going to take you
longer to do the thing. And I I think somewhere I don't
want to accept that I'm like. Absolutely not.
We do not want to accept that. Yeah, OK.
This says crypt time is a concept that challenges
normative, normative normative time by acknowledging how it's
(31:47):
stabled and chronically. I'll individuals experience and
navigate time differently, oftenneeding more time for tasks due
to their bodies or minds. It didn't cut it.
Yeah, that's just that's just the overview.
But I also have to say that like, forget the fact that
sometimes you go to the bathroomand you're thinking that you're
(32:10):
just going in for like a 5 or 10minutes and you are ending up in
there. For longer.
Not to be indelicate, but 40 youknow so.
Yeah, you just, you make an Irish exit.
That's right. You just don't know.
So you could be getting ready toleave the house.
(32:30):
You're like, OK, I'm going to leave the house and in 10
minutes and you're not. Well, it's like you say it's you
don't know, the other day I was supposed to go to the gym and it
was really wet. Like, I mean, sheets of rain,
really, really, really heavy rain.
And I'm going to get really wet going out in this.
I'm going to get really wet going to the gym.
And I texted him and I was like,I don't think I'm up to it.
(32:53):
And he texted me back and said, OK, I get it because we've just
moved into that season and I'm just psychologically not ready
for it yet. Like, I know that's what winter
is going to be now, but I'm justnot there in my mind yet.
And he was like, yeah, I get it.Because going out in the summer
as a person, getting into your car or getting into transport
(33:15):
would as is a very different thing than getting in in the bad
weather and the wet and the cold.
And I drag my wheelchair across my body getting into my car,
which means everything is dirty.Like right.
I I get, I get up in the morning, put on key clothes and
then by the time I get there I feel like telling people.
Muddy and wet. I really did put on king clothes
(33:36):
to come here, like I really did.And they're like, OK, Laura,
there is just things where I have to factor more time into
stuff that I don't accept I haveto factor in.
So it's different. I wonder about the the larger
experience of time too. Not just the question of being
late, but time is a larger concept because because
(33:57):
disability does tend to slow youdown.
And in slowing things down, you experience time differently,
right? And it's not just about being
late, it's about noticing the present moment in a different
way. I think I feel that that's
(34:19):
something I've been really striving for is up saying, OK,
whatever it is, whether it's just going to be slower for me
to to do something or if I have to take a longer pause.
Like I try to just use that timeto be more present, to notice
(34:40):
the things around me, to turn that time into a gift because I
can't just sail through it. I mean, for so many years
walking with a cane, like when Iwalk from place to place, like
every time I went anywhere, I was a walking meditation, right?
Because I had to think about it so in such a focused way that
(35:05):
there was no other place to be but where I was and what I was
trying to do. Yeah, you don't get done work
very fast. Right.
So there's like a meditative quality to it that you can.
I mean, I think that there can be frustration with it, but if
you stick with it, maybe reframeit, you can embrace that slowing
(35:26):
down and use it too. Well, what's what you like?
Go ahead. About not driving.
Right. Well, you said that, yes.
Talk about that. Just pretty much like what you
were saying. I mean, I like the fact that I
didn't have to be so aware of what everybody was doing that I
(35:47):
could just enjoy the scenery, that I could even get lost in a
podcast or audiobook, that I could meditate if I wanted to.
Right. That I could have a conversation
with my driver like, you know, like there were things I didn't
have to be at the mercy of whatever my immediate emotion
(36:11):
was because I was driving on on a road that was annoying.
And at least that's how I was. There are some that would say I
was not the best driver, but I'mnot going to worry about.
That to differ. To differ, let's shelf that.
They're wrong. Actually, they're wrong.
They're wrong. Thank you.
(36:33):
I really enjoyed not driving forthose reasons.
I could breathe, I could just relax into it.
Yeah. And I feel that there's in my
being out here where I live now and not traveling, I've really,
(36:54):
really attuned to the seasons. I'm really attuned to my
environment in ways that are deeply meaningful to me and that
I may not have given myself. I almost certainly would not
have given myself permission to have this different experience
(37:16):
of the world that is slower paced and very much of A place
if I hadn't begun using a wheelchair and and slowed things
way down. And so in a sense, it's enhanced
my sense of time because I am experiencing time through all of
the different seasonal things, you know, whether it's noticing
(37:40):
what birds are coming into my woods and my soundscape, which
changes the time, noticing how the light changes, which windows
the sun comes through, noticing the leaves changing because I
live in a deciduous forest. I don't know.
I have a weird My whole sense oftime has shifted in the last
five years. Yeah.
(38:03):
Yeah, I get that. And some of that too.
My husband says that too. And there's nothing wrong with
them. But it is.
He's largely retired now. And so all my retired friends
and like, I was talking to my uncle the other day and he's
like, yeah, it doesn't matter ifit's Monday or if it's, I don't
know what day it is and it doesn't matter.
(38:24):
And I was like, yeah, I know. If you look back at history and
you look at like, not to get tooheavy, but of like the
industrial revolution and how they essentially put an alarm on
for everybody in the town to make sure they were all up to
work, right? That's how we got into this
nest. Like there's a reason that we're
(38:47):
all doing this. Like it's a whole sort of nine
to five. I'm not necessary.
I'm not saying that it works forsome people.
All I'm saying is that it doesn't work for everybody.
And the pandemic made us think about the fact that not
everyone's system works the sameway and.
Right. I think that's a really, and you
know, the whole conversation we've been having about
(39:09):
neurodivergence is like that. Not everyone's brain is weird
the same way. And we all should have a bigger
conversation about that because it's like we're not all built
the same way and not everyone who's disabled is built maybe
differently, but also all three of us have a different
sensibility. So like, I just think that part
(39:31):
of reason why we're doing the podcast is like there's a nuance
to it. I just think people think, oh,
well, yeah, that's what we do. That's the system.
And we're like, well, is it the system?
And is it? Is the system working?
To the right system, girls, don't you feel?
I mean, I'm sure we've all felt this push to fit into that
(39:53):
system. Oh, I've told.
Right. But I still feel massively I've
been I've been retired a long time and.
But I still have the sense of what should be happening Monday
through Friday and having weekends off.
It's completely illogical. But it's it's like so wired into
(40:14):
my sense of time, so wired. I can't shake it right?
I just don't know how to shake it.
Yeah, I'm have the same way. Like I don't have to teach this
Saturday and I'm like, I have the weekend off, right?
Wait a minute. If I really thought about it, I
could give myself a weekend probably at some point in the
(40:36):
middle of the week too, because I can work whenever I want to.
I mean, I have definite teachingdays, but you know, the rest of
my work schedule is my own. And it's just, it's just the way
I think about it, it's just the way it's been sort of bred into
me. I am horrified because I've been
(40:58):
reading all these articles lately about what's it called?
It's 9996 or something. It's like people are working
9:00 to 9:00 sick days a week and that's like the norm.
I know for the like 996, I thinkthat's what it is.
I I'm probably getting the number wrong, but there's
(41:20):
something to that effect that that's the people are putting
that in job notices that that's what's expected and 9:00 to 9:00
six days a week or you're not going to make it in this job.
And I just think that is the most screwed up thing I have
ever heard. Like what is happening that that
(41:42):
would be considered an OK way for people to function in the
world? Well, it's also like all three
of us on the pot are like, I mean, I feel a bit weird even
saying this and like, it makes me feel slightly uncomfortable
because I'm, I'm only getting toterms with this idea.
But like if you listened to yourbody better like, we would all
(42:08):
realize that those ideas are notgood, right?
Right. And we all have a different
disability on this podcast and we've all had a very different
experience of it. If I listen to my body like I
did the 9:00 to 5:00 for a long time, and I don't get me wrong,
I enjoyed parts of it. I liked the people, liked the
(42:29):
socialization of it, But there was an exhaustion that I found
really was too much from my bodyto withstand.
And I, I suppressed that and pushed that down for many, many
years. And it's like, if, if you really
listen to that, your system, there's something in the overall
(42:49):
system of it that just doesn't work.
Like everybody thinks that no matter whether you're disabled
or not, like there's just something in that system that's
not quite right. Well, there's a lot.
Of Dent. Yeah, there's a lot in that
system that's not right. And I think what you're about to
say is. What the pandemic did for me,
(43:11):
like it allowed, it freed me a little bit from that.
Whenever I was before my injury,I, my whole goal was and was to
not work in the system. I mean, I, I worked, I was
self-employed. I didn't want anything to do
with, you know, being employed and I loved it that way.
(43:34):
But then after my injury, I liked the safety of not even
having to worry about the tax implications of being
self-employed. So, you know, then I did that.
But but then when the pandemic happened, I was like, oh, I love
this. I work from home.
(43:55):
I wake up when I want to. I work happens so much faster
because I'm not talking to everybody and I just sign in for
meetings and that's it. And then I just relax.
It was, I mean, the best thing that's ever happened to me, I
have to say still is. Silver Linings, you know.
(44:16):
Because I'm still working from home.
Right. Yeah.
And so I mean from the pandemicsor many people across the world.
And but it, I think regardless of whether that works or not for
you, is that what I'm most happyabout is it threw up this
question of is this one system right for everybody?
(44:36):
Right, right. And some of those people threw
up the question. They, they didn't even want that
question anymore. Like after a little while they
were like, wait a minute, I wantto see you guys back here
because maybe you're not being as productive as you could be,
But that what people realized was that everybody was being
just as productive. Well, I have a friend who has a
(44:59):
disability also. And.
She she has a disability and shewas asking for ferried hours and
she's extremely hard worker. And they were like, no, you
can't have it. No, you can't have it.
No, we can't change the system. And then the pandemic happened
and basically they changed the system overnight and they
(45:20):
continued to change the system. And I remember saying to her, so
it can be done, but they just don't want to do it for you.
Hey, before we go, we want to tell you about a very special
organization that brought the three of us together five years
(45:42):
ago. It's called Mind Body Solutions.
They love. They offer live online adaptive
yoga classes, a YouTube library,unique student only gathering
spaces, and special live events hosted by founder Matthew
Sanford. There's no fees to participate
and no yoga experience required.At MBS, you can connect with
(46:02):
others who have disabilities andreconnect with yourself.
That's their mission, to help people live more vibrantly and
more connected, both in mind andbody.
MBS has helped each of us discover new ways to live, work,
move, and simply be in the bodies we have.
And they can help you too. So if you're listening and
(46:25):
living with a disability or knowsomeone who is, check out their
website at mindbodysolutions.org.
It's free, it's hopeful, and there's room for everybody.
That's mindbodysolutions.org. You can also connect with them
through our Looking Up fromhere.com resources page.
(46:48):
Your Internet went out at the end.
Oh my God. I know it's really hateful
today. It's hateful.
And Laura, do you want to redo it?
You had one little glitch. Yeah, I made one mistake.
With the word OK, but that was otherwise it was really good.
I think we're getting better with every take I was.
Trying to cover it but I was like no, it's really.
(47:09):
No, I'm not going to restart therecording.
I'm just going to start from thetop and we'll just do it all the
way through. That way I have all of this on
one thing and I can pull and paste OK.
OK. So then I will do a countdown.
Hey, before we go, we want to tell you about a very special
(47:29):
organization that brought the three of us together five years
ago. It's called Mind Body Solutions.
They offer live online adaptive yoga classes, a YouTube library,
unique student only gathering spaces, and special live events
hosted by founder Matthew Sanford.
There's no fee to participate and no yoga experience required.
(47:50):
At MBS, you can connect with others who have disabilities and
reconnect with yourself. That's their mission, to help
people live more vibrantly and more connected, both in mind and
body. MBS has helped each of us
discover new ways to live, work,move, and simply be in the
bodies we have. And they can help you too.
(48:11):
So if you're listening and living with a disability or know
someone who is, check out their website at
mindbodysolutions.org. It's free.
It's hopeful and there's room for everybody.
Thatsmindbodysolutions.org. You can also connect with them
(48:31):
through our lookingupfromhere.com resources
web page. Thank you.
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