S3, Ep. 11: Is the Cat Alive or Dead?
This Valentine's Day special features a lovely disabled couple being interviewed by Mandi. They discuss life, love, and disability.
Transcript
Mandi Frantz here welcoming you to my podcast - Find Your Beautiful: Life Through the Eyes of a Christian Disabled Woman.[Upbeat Background Music]
Mandi: Happy Valentine's Day! I'll keep this intro short because you may have noticed this episode is triple the length of my usual ones. However, this is probably my favorite one to date! I'm excited for you to listen to this beautiful love story of my friends Matt and Nicole. Join us as we talk love, life, and disability.
Mandi: So, if you can start off introducing
yourselves.
Matt: Yeah, sure.
So, uh, my name is Matt. Um, I'm 31, uh, and I have a disability called
Osteogenesis Imperfecta. It's type one. And it's usually referred to as OI, so
you'll be hearing me mention OI a lot. Um, it means that my bones can break
easier than most people. I've had about 35 fractures and a bunch of sprains and
strains. Um, there's a lot of variability with OI though. So some people only
have a few fractures and others have hundreds. Um, so, you know, um, sorta
somewhere, uh, more toward the, the milder side. Um, but I do use a wheelchair
to avoid getting injured from falling. I, uh, I use a manual chair, um, you
know, for short distances and then a power chair, definitely for like going
outside or anything like that.
Matt: Um. So,,.
Mandi: Thanks for
sharing. I think for non-disabled people, hearing that someone has had, you
know, like 35 fractures is on the mild side of a disability is probably very
shocking.
Matt: Yes. Um,
that's, that's a very common, like, even with other people that, um, that are
disabled, but they're not as familiar with OI. They're like, Whoa. And I'm
like, yeah, no, that's, that's actually not bad. Like. So…
Matt: I, yeah,
Nicole doesn't bat an eyelash now. Um, you know, when it comes to how many or
anything like that. So, um,
Mandi: Yeah,
that's, that's, I, even for me hearing that many fractures, you know, I, for
the first time, in my 33 years, um, I broke my leg last year.
Matt: Oh wow,
femur, or?
Mandi: Yeah. So I
broke my femur. I actually fell. Um, and cracked my femur and it was not a good
experience at all. So definitely as someone who's also disabled, like you said,
hearing, you know, that that's like a milder, um, version of what it could be
is definitely shocking. So that's yeah.
Matt: Yeah, no, I
mean, I'm on, um, a Facebook group for people with OI and like just some of
the, you know, some of the stories I hear where it's like, Oh yeah, you know,
I'm at 80 or 90 or I lost count or stuff like that. And I'm just like, Whoa.
You know? Um, so it's kind of funny because I'll almost have the same reaction
that other people have when they hear 35. So, um, it's, it's kind of funny how
there's like that same, that same reaction just keeps repeating.
Mandi: Yeah. And
one of the things I talk about a lot on this podcast is the fact that
disability is such a spectrum and that diagnosis can look so different in
different people. Um, so I definitely resonate with that. Um, having
arthrogryposis I know a lot of people who have different levels of ability
where it affects them more, affects them less. So I pretty much say the same
thing. I'm kind of in this mid-range. Um, so I definitely resonate with this
idea of all disability as a spectrum.
Matt: Yeah, yeah,
absolutely. I mean, it is, it's such, disability itself is such a broad
umbrella term. Um, you know, it, cause you're talking about it affecting, you
know, literally any part of your body, so, yeah. Yeah. Um,
Mandi: Awesome. And so, how about Nicole?
Matt: Uh, so my
fiance's name is Nicole. She's 31 and has cerebral palsy, which causes
involuntary movements of her limbs. And it also affects her speech and it makes
it difficult for people to understand her unless they're used to how she
speaks. So I'm going to be speaking for her, but, um, we both kind of wrote out
ahead of time with, you know, what we wanted to say to you. And, um, she can
chime in, uh, you know, she needs to, but, um, just to make the, you know, make
it easier to, um, yo, to talk on the podcast. We figured we'd do that. So, uh,
so, uh, yeah, so a little more about Nicole. So, um, so she uses a power
wheelchair to get around and she has an aide who helps take care of her daily
needs. Um, And, uh, so we'd actually, we, we started dating in June of 2012.
Um, and then, in 2015, Nicole moved out of her parents' house. Then a year
later I moved in with her after I finished grad school. And we adopted a cute
Yorkie named Bean soon after that. And then we're planning on getting married
once, once COVID is over, uh, we keep having to postpone because of how crazy
this has been, but you know, we’ll get there eventually
Mandi: You guys
had a date scheduled, right?
Matt: Right. Yep.
Yeah.
Mandi: Last year.
Matt: Yeah. So you
know.
Mandi: Gotcha. Um,
so I know this wasn't one of the questions, but I'm pretty sure people in my
circle are gonna want to know this, but, um, you kind of expressed, um, what I
think a lot of, especially non-disabled people would view as high needs, um,
that Nicole has. So I'm just curious about that experience, Nicole, of moving
out of your parents' house and into your own place. I think even for
non-disabled people, um, you know, it can be challenging to, to move out and be
on your own. So just curious about that experience for you, if you're willing
to share.
[Nicole speaking to Matt – inaudible]
Matt: It was
actually a relief.
Mandi: [Laughs]
[Nicole speaking to Matt – inaudible]
Matt: Because at
the time, uh, her mom was her primary caretaker.
Mandi: Gotcha.
[Nicole speaking to Matt – inaudible]
Matt: And over
time.
[Nicole speaking to Matt – inaudible]
Matt: And over
time it just like wore her out.
[Nicole speaking to Matt – inaudible]
Matt: But, uh,
Nicole had had aides set up already, um, before she moved out. So she had, um, aide
services to help her go to college. And then, um, even, uh, even around times
when she wasn't in school. So it wasn't like 24 hours, but, um, she definitely
did have, uh, like a transition of, of support at, uh, at Hofstra. Right. So she
had a whole kind of transition of, she decided to go to Hofstra to dorm there.
Um, and so then with that, she had 24 hour, uh, aides, then she moved back home
for a little bit and then got her own place. So…
Mandi: Gotcha. Um,
and how about for you, Matt? Moving, moving in with Nicole? What was that
experience like?
Matt: Um, so I
had, in a way it was, it was similar in that. Um, so for me, I, I did, uh,
undergrad from home, uh, with my parents, but then for grad school, I, I ended
up dorming. And with that, um, with that I was actually staying there, uh, 12
months out of the year. And so that was, that was kind of a transition. For me.
Um, cause that was the first time that I had been on my own. And um, I mean,
thankfully with me, as long as I'm not injured or anything, um, then I usually
don't really need much help. So, um, so I was pretty independent. Um, and then,
uh, moving, moving in with Nicole, it was, um, I mean we had already… We'd
already been together for so long before that, that, um, I don't really think
it was that much of a transition. I mean, there was some, but it wasn't, you
know, um, it certainly, we'd also like we spent, we spent a lot of time, you
know, staying with each other for the weekend and stuff like that. So it
wasn't. You know, it wasn't like, Oh, you know, you're dating someone for a
year and then you move in and you're like, what? You do what? Huh? You know?
Um, I wouldn't say we had that much of that.
Mandi: Gotcha. I
hear ya. [laughs]
[Nicole speaking to Matt – inaudible]
Matt: Nicole said
she, like, she grew up with a brother and…
[Nicole speaking to Matt – inaudible]
Matt: [chuckles] So she's used to messy, so
Mandi: [laughs] yeah.
Well, that's good that at least made the transition easier, Nicole. Um, so I
feel like that's a good segue into more about your love story.
Matt: Sure. Yeah.
So, um, so we, uh, we both attended the Henry Viscardi school, um, or HVS, uh,
and, um, for your listeners who might not know, uh, it's a school for students
with disabilities. Um, so all of the students there, uh, have different
disabilities. Um, so Nicole was a grade above me and, um, even though HVS is a
really small school, um, we, we didn't really talk, uh, it's, it's an
interesting situation because the school is so small that like everyone, for
the most part, everyone knows of each other. Um, but it's, you know, not
necessarily that everyone actually knows each other.
Mandi: Yeah, I
would say even for me, because we actually all attended the same school, so I
would say I connected with both of you may way more after I graduated, even
though I, I, knew who you guys were in school.
Matt: Yeah, no,
exactly. Same. Yeah. So, uh, actually in a similar way. So, um, Nicole and I
really only started, uh, hanging out with each other as friends after we had
both graduated. Um, we were hanging out with a mutual friend of ours and
that's, that's kind of how we, we started, um, you know, just started talking
and then, uh, about maybe six months after, so Nicole already graduated. Um,
and then about six months after, after I graduated, we started an alumni
association together. Um, and so that was one way. Uh, that we got closer. And,
um, Nicole had actually, as she, uh, took on a leadership position, um, in, in
that really, uh, just to try and get closer to me. So, um, you know, well, I
wouldn't say just, but that was, that was one reason.
Mandi: [laughs]
Matt: But, um, you
know, that, that was definitely a motivating factor.
Mandi: So, so Nicole,
you were into Matt first is that kind of how it was?
Matt: Yeah. She
had actually had a crush on me for, um, by the time we started dating, uh, she
had a crush on me for about three years
Mandi: Wow!
Matt: And I didn't
have a clue. Um, so, and then I would say any time I did have a clue, she would
just like, you know, immediately do whatever she could to like downplay it and
tamp it down. And so, you know, yeah, she got scared. So, uh,
Mandi: So tell me
how this, um, clip that we're going to be hearing
Matt: Yeah.
Mandi: plays into all
of this.
Matt: So we had
started the alumni association. That's how we had, um, become friends. We
started getting closer as well as just kind of hanging out with, uh, this
mutual friend of ours. When we were friends, Nicole introduced me to the TV
show The Big Bang Theory. We, um, we have a clip from it that will help to
explain, uh, kind of how we got together.
Mandi: If you want
to just share a little bit more on the clip or…
Matt: Yeah. So
years before we'd even started watching the show, um, when Nicole saw, uh, when
she first saw that episode, she thought to herself, “Oh my God. Um, if I ever
tell Matt how I feel, um, that's exactly how I'm going to tell him.” And so
kind of the backstory with that is the, uh, the day before we were supposed to
be meeting a mutual friend to hang out, um, Nicol had told me that our friend,
uh, thought that I liked her, the mutual friend. And, um, the thing is I
didn't. Uh, and so that day that we were going to be seeing each other. Um, I
kinda decided to spend most of my time talking to Nicole. And at some point,
uh, she had mentioned that she had a crush on a guy in college at her school,
which was not me, uh, at that time. And so, um, although she did have a crush
on me, but not the one she was talking about. Later that night, um, I kind of
realized how much fun I had with her, especially after spending most of the day
with her. And we ended up talking that night and we were kind of talking about
just how messy friendships can get when friends start developing feelings for each
other. And we were initially talking about this situation with our mutual
friend, but eventually we kind of realized that we were both beating around the
bush about how we actually felt toward each other. So Nicole, um, already knew
how she felt about me, uh, for a long time having the crush for three years and
everything. But for me, I, I almost think it was really that day that, um, that
it really hit me. Uh, thing was just a combination of both spending time with
her and then maybe hearing that she had a crush on someone else that kind of
pushed me to, you know, to go ahead.
Mandi: [laughs] Very smooth move, Nicole.
Matt: Um, yeah,
so, right, exactly. Um, so anyway, so after we were kind of,
[Nicole speaking to Matt – inaudible]
Matt: That was
not… Oh, that wasn't even her plan, but, um,
Mandi: But it
worked out. [laughs]
Matt: It worked
right. So, um, so yeah, so we had, you know, we were beating around the bush
for a while, and then I kind of hinted at my feelings by saying, this reminds
me of Shrodinger’s cat, uh, from, you know, that, that episode with the clip. And
when I said that, um, Yeah. And Nicole says, like, she couldn't believe that
this might be happening and that this was the way that she had planned years
ago. you know, that if she were ever to tell me, this is how she would. So she
closed her eyes, took a deep breath, and then she asked me, you know, is the
cat alive or dead? meaning do, uh, do we
have feelings for each other um, or not? So neither of us wanted to answer, um,
because we were both just, you know, so shy and nervous, but finally, uh, she
did answer first and then so did I, and now we've been together for eight and a
half years.
Mandi: That is awesome!
[Nicole speaking to Matt – inaudible]
Matt: Yes. Yeah.
Yeah. Nicole is adding in. So she's like, I, I waited a day to tell her because
I don't know what time it was at that point. Maybe like three in the morning.
Um, no?
[Nicole speaking to
Matt – inaudible]
Matt: 12? 12?
Okay. Yeah. Um, I I'm like, I don't know. I I'm like, yes, I think, but I, I
was like, just starting to, you know, she goes, I was yelling at him like, so,
so what is it? And, um, I think for me, it was just like, well, you know, I, I
think I only kind of realized this, like, today. And I haven't had a chance to
really turn this over and I'm like, what if, you know, I don't know, I wake up
tomorrow and I'm like, “Oh man, what was that all about?” Um, but, uh, I, I
couldn't even sleep that night and like, and as soon as I got up, I was like,
yeah, no, this is, this is definitely real.
Mandi: That's
awesome. Well, you mentioned at the start, when you were introducing yourselves,
that you want to call are engaged. So, if you can kind of tell us that. I had
the honor of seeing the video of I'd love to hear how that happened.
Matt: Yeah. Since
the Big Bang Theory show was such an integral part to how we ended up, uh,
being together, if only because I think if, if that episode hadn't been
written, I really don't know if either of us would have ever gotten the guts to
say anything. So, uh, so it, it was always kind of in my mind that if I were to
propose and then eventually it became, you know, when I was going to propose,
um, how would I kind of work this in? And what I decided to do, and I really
didn't think this had a chance of happening, but, um, I decided to be like, “Hey,
you know, maybe there's a way that I can write to the cast of the Big Bang
theory, and I don't know, maybe we could like go to see a taping of it or
something and I wrote out a letter just explaining, um, our story and, but I'm
thinking, I'm like, I don't know how to get this to anyone. I mean, you're not
going to get it to like the actual cast member or someone, you know, directly.
So I'm trying to think, you know, who's someone I know that may have some
access somewhere> And oddly enough, it was through our alumni association
that we'd started together all those years ago. I reached out to the person who
had, who was then the current president who took over after me. She's just the
kind of person that would have connections and she didn't, uh, she didn't have
anyone, but, um, she knew someone who was actually, uh, an alumni, uh, and he
worked at CBS sports, I think. And that was on the East coast. They tape on the
West coast. Um, but he was able to, uh, write to his counterpart on the West
coast and reach out to them. Uh, and within a couple months of when I wrote, we
pretty much had a plan of, would we be able to get tickets to a show? And, and
we, we got, we got tickets and everything, and then they were planning out, you
know, okay, at what point, uh, during the taping, could they kind of toss it
over to me and, you know, give me a mic and let me, um, propose in front of,
uh, like the studio audience that's there and everything.
Mandi: It was a pretty
great video and Nicole, you seemed very surprised.
Matt: Yes. She was
very, very surprised.
[Nicole speaking to Matt – inaudible]
Matt: Um, yeah,
she was so unfortunately on the trip there, Nicole was feeling pretty sick. Um,
[Nicole speaking to Matt – inaudible]
Matt: Yeah. Yeah.
So during the, during the trip she was, she was extremely sick. Just, just
nauseous and everything.
[Nicole speaking to Matt – inaudible]
Matt: Yeah. She just said she throw it
multiple times. Yeah, during the taping.
Mandi: Oh my
goodness. I'm sure that made it even more memorable.
Matt: Yeah, that
was something. Actually, so this is kind of a funny story.
[Nicole speaking to Matt – inaudible]
Matt: Yeah. Yeah.
And Nicole was so dazed and confused and dehydrated and just, oh my God. Um…
Mandi: So was this
all part of your plan, Matt? Get her sick and she’ll be so shocked. [laughs]
She’ll have no choice, but to say yes. [laughs]
Matt: Right, right, exactly. Right, get her…give
her a stomach virus.
Mandi: [laughs] I
love that. Um, Yeah. Well, you know, we, we've kind of talked about, um, you
guys doing so much, you know, moving in together, this level of independence
that I think is still again, like very surprising, not even to just
non-disabled people, but I think even a lot of people with disabilities who still
feel like they can't um, achieve that level of independence, but I do want to
talk about some challenges. So, um, what is the greatest challenge that you
face together, um, because of your disabilities?
Matt: Uh, so at first,
um, Nicole's main concern was that she would accidentally injure me or break
one of my bones because of her involuntary movements. Um, and they can, uh,
they can be really strong and sudden, especially her right arm, which, uh, we
all kind of say has a mind of its own.
Mandi: [chuckles]
Matt: And so, uh,
in school she actually had two kids in our class that had, um, OI, the, you
know, the same disability as me. So she was, you know, well aware of how easily
I could be injured. And it's, it's kind of sweet and silly, uh, before our
first date, we actually figured out, um, how we could safely hug by me drawing
a diagram in Microsoft paint. Um, and it had uh, her right arm drawn in red
with the word danger in all caps pointing to it. Um, in this like silly little
diagram we had, um, you know, so we, we had to be mindful of like how we were
going to park our chairs to get close to each other, make sure to turn them
off. Um, actually Nicole still kind of has to remind me to turn my power chair
off sometimes when I'm… Always, she says, so, um. But, uh, or, uh, another
example would be like, say we're in a movie theater where the sound very loud,
Nicole can easily be startled um, and so she always makes sure that I'm on I'm
on her left side and not her right side. S that way, you know, if she jumps,
she doesn't, uh, punch me in the face. So, I mean, that was, you know, that was
definitely, that was one of her, her main concerns. For, for me, um, the first
few years, I think it was a big challenge really for, for both of us was, um, we
were sort of in a long distance relationship, even though we only lived one county
away from each other. So for me to get to Nicole, um, because I didn't drive, I
would need to plan to travel, uh, three hours each way by taking a paratransit
bus from my home to a mall that was on the border of our two counties and then
another paratransit bus, uh, that would pick me up at the mall and take me to
her place in her county. And so for part of our relationship, um, when Nicole
would see me, she relied on her parents to drive her and then at a later time
when she was on her own, she would have to take two trains for about an hour
and a half each way, um, just to get to me. And…
Mandi: Yeah, this
is definitely like something, I think a lot of people don't even understand.
Matt: Yeah.
Mandi: Um, just,
you know, like, so paratransit, you know, for those who may not be as familiar,
uh, is basically kind of this subset of transportation under, um, at least here
in New York, in New York City the MTA does Access-A-Ride and I know Long Island
has, um, Able Ride, which is kind of the same… operates similarly. Um, and
basically they're supposed to, uh, pick you up from your home and take you from
point A to point B. Uh, but they are notoriously uh, unreliable in a lot of
ways. Always showing up late or not, uh, not sticking around and leaving
people. So reliable transportation is very difficult for people who have
mobility issues in particular, but anyone who really relies on paratransit. Um,
so I definitely remember those days. Um, and even now just for me to go to
work, sometimes, you know, it's two or three buses and a train and you have to
find an accessible train and all of the extra challenges of being able to
travel. So, I think that's a great point that just being one county away is
long distance for some people.
Matt: Yeah,
absolutely.
Mandi: I think you
make another really good point too, is I talk a lot on this podcast about how
the world is not really designed for people with disabilities. And so we don't
really expect the world to adapt to us. We adapt to the world in a lot of ways.
Um, and so this idea of planning that goes into just simple things like going
to visit your girlfriend. Um, I think it's, you know, people don't realize how
much planning goes into things and, you know, I've had friends, especially when
I was in college that would, you know, call me the day of an event and just
say, Hey, do you want to come? And yeah, no, I need to know in advance.
Matt: I gotta know like a week in advance. Yeah, Yeah.
Mandi: Um, and so
I think that's a really great point just of the disability experience is that
the, you know, typical life things do take more planning and plotting to achieve.
Matt: Yeah. Um,
the, the way I usually like to describe it as, so I'm, I'm actually left-handed
and if any of your listeners who are left-handed will know this, the world is
really not designed around you. Um,
Mandi: [chuckles]
Matt: And so it's
like that, but turned up to 11. Um, and it's always also
Mandi: Yes, my
husband’s also left-handed and so he says the same thing.
Matt: Right, yeah,
it's just, you know, you have to, um, just try and adapt your way of, of doing
things. So in terms of something that currently, um, that impacts us because
you know, now I don't think Nicole is as worried about, uh, her breaking
something on me and, and we're not having to rely on transportation to see each
other. Um, the thing is, is that most of the same things that impact one of us
impact both of us like wheelchair accessibility, if we want to go somewhere or
do something. So, um, Yeah, it's in terms of these challenges, it's not really
as a couple now, there's not really much that is, um, that that's really that
different because, um, you know, we do face a lot of the same obstacles, even
though Nicole, you know, does have 24 hour aides and, and all of that, um, we,
we still ended up facing a lot of those the same obstacles. So, um, another
thing that we were kind of thinking about, you know, if there is something, aside
from that, it's that neither of us is able to take care of each other
completely. Um, so like, I can get things for Nicole or, you know, do things,
um, that she can't because she just doesn't have the, uh, the dexterity to do. Um,
but like, I'm not able to lift her in the, in and out of her chair, for
example. Um, and then for me, I don't really need much help, like I said,
unless I'm, you know, healing from an injury. So it doesn't really matter that
you know, that she can’t, um, help me, but it is something that, you know, we
definitely have to work around that. Okay, you know, she, she needs to have an
aide 24/7 and you know, and that's fine. I mean, we, you know, we work, we work
around it. We have a good, um, a good routine. Nicole is, uh, two very great
aides that have been littered for a long time now. So, and,
[Nicole speaking to Matt – inaudible]
Matt: And, Oh
yeah. And we have a plan for like, if I, if I were to break something, what
would we do? Um, you know, when it comes to having an aide, you know, if I need
help with stuff. So, um, and even like, even now, you know, if it's something
small, um, you know, like lifting something really heavy, I'll ask whatever
aide. It's no problem, like it's, it's fine. Um, or, you know, let's say like
they're sitting down or something and maybe they're eating or whatever, and
Nicole needs something to drink, I'll go grab that. Like it's, um, it's, it's
gotten very natural. Um, and at the same time though, like her, you know, her
aides are very good at like just giving, giving her space, giving the two of us
space. So it's really, you know, um, it's really just like, you know, there's
someone here that's like, you know, just sitting down at a table and just
waiting for whenever Nicole needs something. So, you know, so I, I would say
that's, that's it, as far
Mandi: So with all
of that, and obviously not delving deep into your like personal life beyond what
you're comfortable sharing, but I know, you know, one of the biggest questions
that I've gotten and that people have just asked, even as a result of this
podcast is, you know, how does having this kind of third person or somebody
there all the time and even just having the level of disabilities that you guys
have, um, affect intimacy? Like, are you guys able to connect, um, you know,
beyond friendship in a physical way?
Matt: Oh yes. I
mean, definitely.
Mandi: Good, cause
like I said, I know that like, that's going to be the question that everyone's
going to ask, just having someone there 24/7, um, you know, for some people
just not having that privacy or having that alone time, especially to
non-disabled people, it's, you know, mind boggling that you can have that time.
Matt: It can be
like a little awkward, but, you know, Nicole will just say like, “Hey, can I go
lay down?” And then, you know, her aide will get her in bed and that's it. So,
um, you know, and like I said, even just in terms of, you know, just, just
having, like, just having time of not having someone. Like hovering around you.
It doesn't even need to be that we're really doing anything. It's just, you
know, just having that, um, that alone time together of just, you know, just
talking or watching something and not like, not feeling like you're like I
dunno, just having like a third wheel there all the time. It's not, um, it's,
it's just important, I think to, you know, to have, um, I don't know, it's just
kind of like the elephant in the room. So like, you may as well just kind of
address it and, you know, and, and have a plan for, you know, for how you want
to, um, how you want to navigate that, you know, that whole, uh, relationship
with having another person there.
Mandi: My next
question then, um, since we did talk about some of the challenges is, you know,
how has having a disability, or both of you having disabilities, made your
relationship better?
Matt: Right. Um,
so Nicole was also just adding that that's how, um, you know, that's how she
decides to, uh, to handle it with her aides. But I think as, as, you know, as
you know, with disability, because it is so broad, um, there are so many
different, um, there's so many different strategies and ways for addressing all
kinds of needs and issues. So just sort of as a general thing, I would say that
what works for us may work for other people, but at the same time that that's
not to say that it will work for everyone. You know, as, as far as how being
disabled has made our relationship better. Nicole and I, we both kind of feel
that dating someone who already has a disability makes it much easier when
you're starting out, because you don't have all this like societal baggage of
misconceptions and awkwardness that you have to educate the other person
through. You can really just focus on building a relationship, not like a
relationship, you know, despite, you know, disability or anything like that.
And, so, you know, we, we do also agree though that the transportation issues
that we had, in a way, it was actually a good thing because it helped to test
our commitment to each other early on. Um, just because if you're willing to
travel for six hours, just to see someone, you know, a few times a month, um,
or in Nicole's case, like even if I was going to her on the way back, like she
would be waiting outside with me in the cold, in the cold and quite literally
in the snow, um, at times, you know, and we're just waiting there for an
unreliable bus. Um, and so it just kind of, it shows to yourself and to the
other person, how committed you are. If like, if this is just like a fling, I
can't really see someone being that willing to go through those lengths just to
see them. So,
Mandi: Yeah. No, I
hear ya.
Matt: So in, in a
weird way, it's, it's kind of, it's helped our relationship. You know, the
things that are the most challenging, and I'm sure your listeners are familiar
with this idea, is just that it's not even like the disability itself. It's the
way that society doesn't match or try to that well at least, match, um,
disability. So really the, the most challenging part of it is not, um, the
person and their individual symptoms or anything. It's the environment that
they live in that is really the most limiting. So
Mandi: Basically
what I'm hearing is, like, the fact that society and the world was not really
designed with disabled people in mind, in some ways brought you guys closer
together because of the challenges that you had to face in your relationship
early on and the level of commitment that you had to show each other, which,
you know, non-disabled, people can probably take a little bit longer to kind of
show that level of commitment.
Matt: Yeah,
definitely, yeah. As well as just like, you know, like I was kind of saying
that there's a certain comfortability, where it's weird. It's something that
like is so common in your life that. Okay. So it would be like the idea of
having to kind of constantly explain your lived experience to another person.
Um, you don't have to do that because they, in a lot of ways, have had the same
experience. So, um, you know, so you don't have to explain the problems with
paratransit because you know what the it's like, you know? So, um, so that's
definitely something that, that was easy to do.
Mandi: And I
shared my story as well. So, you know, you guys know I'm married to a person
who doesn't identify as like physically disabled. Um, so, you know, those were
definitely like challenges that we face and kind of in the same way that you're
saying those things helped you guys to be able to be closer together, that
level of understanding, um, the education part can also, as challenging as it
can be, it can also be something that can draw people together. So, I just
don't want people to be afraid or thinking, you know, I should just stay with a
disabled person.
Matt: Absolutely
not. Um, you know, we, uh, actually a bit later on, we were going to talk about
that as well. So. Yeah.
Mandi: Yeah. Um,
okay, awesome. Yeah. So, um, I'll jump into the next question. Um, as we're
starting to wrap up here, um, so one of the things that I, you know, get the
most, one of the questions I get the most from my single disabled friends is,
you know, how did you find love? Like what did you do? And I always try and
tell people, you know, there's no magical thing. [laughs] Like there's no
magical thing that I did. Um, but what advice can you offer to disabled people
who are looking for love?
Matt: Yeah. Um,
and, uh, I would even, uh, I would even broaden that a bit to say, um, also for
people who are thinking of you know, maybe being in a relationship with
someone, uh, who has a disability, I think this would, would also be relevant
to them. So, um, but we, we thought about it and the main thing is to not let,
um, disability be the determining factor when, uh, when you're looking for
someone, but it's nuanced. So by that, we mean, you know, don't limit yourself
as a disabled person, to either, I only want to date another disabled person,
or I don't want to date another disabled person. Um, disabled people can have
internalized ableism where we look at, you know, being with someone who isn't
disabled, um, is sort of like this, this ideal or this dream thing, you know,
and it's like, Oh, so that's like, I don't want to be with someone like me because
I see someone like me as a negative thing. And so, you know, we, we kind of
think of this as if you see it that way and only that way, um, then it can be
limiting to you. And it's just not really a healthy way to, to think about
disability and about yourself, of, you know, of, of wanting to limit yourself
to only someone that, um, you know, that, uh, doesn't have, a disability, but
at the same time, that doesn't mean that you should limit yourself to only
dating other disabled people. Um, you know, the, the thing that you should look
for is a relationship like any other relationship, where you love each other,
you're compatible, you can communicate well. Um, because all of those are the
things that any relationship should be built on. And so it's really just, you
know, Having, having an open mind to, well, “Hey, do I have a connection with
this person or not?” We can figure out all of the mechanics of it. And you
know, if it comes to needing to educate the person, explain things, all that
that's, that can work out totally fine, because, I mean, you're an example of
that. So, um, what matters most is the connection that you have, um, with that
person. So in our case, we happen to both be disabled because we had a
connection. We knew each other, you know, and, and that's just how it worked
out, but there's definitely a world where, um, we both could have made
connections with two people that, uh, aren't disabled and, you know, and been
with them. So. Um, this is just how it happened to work out for us.
Mandi: Yeah. Well,
thank you for that. Um, yeah, all of that’s super insightful and I definitely
agree with all of it, too. Just, I like what you said about, you know, not
limiting yourself either way. Um, and that idea of, uh, disabled people kind of
having this internalized ableism, um, I think is really such a powerful
statement. You know, I, I think that, especially in this climate where we're
all fighting for equal rights and the disability movement has really come to the
forefront of people's minds, um, people don't realize how fractured the
disability community is within itself. How people with different disabilities,
you know, have prejudices and stigmas against other types of disabilities. So I
think that's been one of the biggest barriers to our community, being able to
move forward, you know? Um, I often look to like the LGBTQ community and how
they've really like rallied together and you know, across so many different
things, class and race and everything, and they've been able to rally together
and really make some progress on their equal rights. And I think that we
definitely need to be more unified as well, just as a community in order to
achieve those same outcomes. So I really appreciate you saying that.
Matt: Yeah. So I
do think, you know, it's kinda really it's, unfortunately, that kind of
internalized oppression is really just, it's a result of, in my opinion, just being
in an oppressive society. And so naturally you're going to adopt, whether you
really mean to or not, you know, you're gonna, um, your, your default position
may be to adopt some of those very same, some, some of those very same beliefs.
And so it's important, you know, not just to be, not just educating other
people, but to be on guard, um, for yourself. And so that's why, you know,
talking about things like internalized ableism, um, or even, you know, even you
may be disabled, but, you know, making sure that you're not, you know, holding,
uh, abelist ideas and expectations of other disabled people or people with
different disabilities from you. Um, it's, it's really important.
Mandi: Yeah, for
sure. I agree. Um, so the last question then, before we wrap up and I let you
guys enjoy the rest of the evening, um, is, you know, is there anything that
you want non-disabled people to know about you or your relationship?
Matt: So I think
maybe this would be a good time to, um, to kind of tell, tell you a funny
story. Um, so, uh, and, and I mean, we have, Oh my God, it, we have so many,
um, but one, one time in particular, um, we were having dinner at a restaurant
by ourselves, um, and you know, Nicole's aide was around, but, um, she was like
sitting alone at the bar and we were at a table. Um, and a stranger asked her
aide, like, you know, why aren't you staying with them? Why aren't you over
there? And, uh, and her aide said, you know, they're on a date, so, and the
person replied, “They can do that?” Um, and they were shocked. So, um, so in
terms of, you know, just things that we would want non-disabled people to know
is, uh, first off to that lady who was shocked, yes, we can do that and we can
do a lot more. Um, so, you know, just because… So for Nicole, you know, just
because someone, um, either has difficulty speaking or maybe they, maybe they
can't verbally communicate at all, it doesn't mean that they don't understand
you and that they aren't, you know, full people with thoughts and emotions just
like you. Um, and really it's actually just a good rule of thumb uh, for any
disabilities, disabled people are just like you. We have lives outside of our
home. Um, we love, we date, we work, we go shopping. We have sex. We marry, we
can raise children. Um, and certainly I'm sure you've talked about that.
Mandi: I have.
[chuckles]
Matt: You know, and, uh, we can take care of pets.
Um, you know, we want the same things out of life that anyone else does. Um, we
just happen to accomplish things, uh, you know, a little bit differently and,
and with some help, but, um, you know, with, with patience and working at
things, we can reach the same things and want the same things that, that anyone
else does.
Mandi: Amen to
that. And I think that's like a great way to close the episode. So thank you
both so much for taking the time out and just taking time to think through
these questions and really for your transparency, being so willing to share
your story and letting me delve into your personal lives as well.
Matt: No, this was fun.
Mandi: I know it's
helpful. Definitely helpful to people.
Matt: Yeah.
[Bling]
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