January 9, 2025 • 36 mins
Our guest today is Becky Curran Kekula. Becky is a disability inclusion advocade. She is a speaker and movie industry equity and inclusion expert. Her experiences of both achrondoplasia, which is a form of drawfism, and medical motherhood give Becky a unique persepective on care.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
[Music]
(00:12):
Welcome to Love Doesn't Pay the Bills, I'm Lisa Chutey.
My guest today, Becky Curran Kekula, has plenty of experience as both a caregiver.
Being the mother to a beautiful baby boy and also as a recipient of care herself,
her son Jackson, lived just six and a half months.
(00:37):
And Becky writes that, "He was already Mr. Personality, charming everyone he encountered
with giggles and holding the hearts of his adoring family in his mighty grip.
And Jackson brought immense joy into the world, his smile was radiant and unforgettable."
Becky was born with a condra plasia, which is the most common type of short-limbed dwarfism.
(01:01):
She writes that her parents always taught her to keep a positive outlook, no matter how
harsh the outside world may be.
She grew up participating in sports such as sailing, skiing, sockets, swimming amongst her
average height peers.
When people ask her if she likes being a little person, she always has the same answer.
(01:23):
I never want to change, but I want the way the outside world reacts to my difference
to change.
She is a TEDx International motivational speaker and an advocate for disability inclusion.
Becky has a long and very impressive career.
She has worked in the movie industry on disability inclusion.
(01:48):
Her credits include working at Creative Artists Agency, CBS Television Studios, Marketing
Director and co-founding board member of the Catalina Film Festival, which is very cool.
And she founded Disability in Media, which focuses on positive disability inclusion storytelling.
(02:09):
Becky has spoken at over 500 in-person venues and is the employment chair of Little People
of America.
Welcome, Becky.
Hello, thanks for having me.
Yeah.
And I'm so excited to dig in and get beyond those titles and credits, which are really impressive
(02:30):
to what your personal experience has been like.
It sounds like you grew up in a way that you had a lot of encouragement to be very active
in and participate in mainstream life around you and how was that for you?
(02:51):
So to give people a little bit more context, I'm a person with dwarfism, so I stand for
Feet Hall as an adult and as a child, I was still shorter than my average type peers.
There are only about 65,000 people with dwarfism in the United States and about a few hundred
thousand worldwide.
(03:11):
So it's very rare for you to come across a person with dwarfism in everyday life.
So our perceptions have been, and our stories have been told through the media on TV and
in films because that's what most of society is exposed to on a daily basis.
If there's a positive portrayal, people treat us with respect.
(03:33):
If there's a negative portrayal, they may be a little bit more scared to interact with us
or be tempted to point there and laugh at us.
So I grew up in a family where there's no history of dwarfism, which is very common, 80%
of families have no history of dwarfism before someone is welcomed into their family.
(03:54):
I was fortunate that my parents were willing to do as much research as possible to give
me the best possible life that they could.
And I always say that they advocated on my behalf until I was old enough to advocate on my
own behalf.
And some medical doctors gave them advice such as treat her just like you do her average
child or sister, allow her to participate in activities that are of interest or her don't
(04:19):
be afraid to let her fall because that's the way people learn and grow.
That's how it is living in society and I shouldn't be isolated or excluded from any of those
activities that were of interest to me.
So I went to school at the same time as my average type peers.
I participated in soccer, sailing, skiing, swimming.
(04:41):
I then pursued a marketing degree at Providence College and went after a passion for working
behind the scenes in the entertainment industry because that would help change how society
views people like me.
Early on when I started my advocacy, I knew that I wanted to advocate on behalf of all disabilities
(05:02):
because the dwarfism population is so minimal and the message may not get as far.
So if I put us in a group that we do qualify under the Americans with Disabilities Act says
that it's a physical or mental impairment that limits one or more of life's major activities.
We do require stepstools for reaching things, pedal extensions for driving adjustments in
(05:24):
everyday life to make things feel more comfortable and allow us to be successful.
So I've leaned into the disability community and as I've gotten to be older in my turning
40, I've started to lean more into the other aspects of disability that are now part of my
identity, growing up in a world that isn't used to your presence.
(05:49):
You're constantly reminded that you're different, especially in large crowds of people who
don't know how to react or act.
And then the just experience of being an adult, I unfortunately had a son and six months
later he passed away so experience and grief and then my body, I've had several surgeries
(06:12):
due to my dwarfism and one recent surgery was a comprehensive spinal fusion surgery.
Now I'm still working on recovery and gaining my ability to build enough strength to walk successfully
and not giving up on that but it can be tiring some days and it definitely impacts your mental health.
(06:33):
Yeah. So first of all my condolences on your son.
And I wanted one of the reasons I was excited to have you on is because you have such a wide variety
of experiencing care as a recipient and also providing care. I think so often we divide people
(06:55):
into these categories. They're either the person needing to receive care or they're the caregiver
and we don't see the strengths and talents of the person receiving care.
We don't see the needs or limitations of the person giving care.
So I think it's I'm interested to hear what you have to speak to,
(07:17):
you know, making sure that we see all people with with both their skills and talents and
their limitations or needs.
Yes so it was interesting because I never thought I actually had as someone with the
physical disability who was basically encouraged by my parents to go out into the world and live.
(07:44):
Once I decided after college that I wanted to move across the country from Boston to Los Angeles
they said go for it so long as you have a job in a place to live. It was really hard for them to
admit that they were okay with me going across the country because
it's scary for any parent whether someone has a disability or not.
(08:06):
But it really was a true sign of my eagerness for independence and when I got out to California
a lot of people went up to my parents and said how could you let her do that?
How could they not?
If you have some opportunities and you're ready to go then yeah and I look back even to like when
(08:27):
I was getting ready for college and even as I was applying to work at the many jobs I applied to
out in LA I took my parents out of the equation as soon as I could so I could make my own decisions
and have my own experiences and they were always there ready willing and able to help me
but I didn't want them to be the reason that I got a job or just like that it was a favor that people
(08:52):
were doing. I wanted to do this on my own. So I had a stigma a little bit around caregivers
just because of lack of experience and I thought these people are speaking on behalf of our population
and they don't actually know what we may want or need. Which can be true sometimes I can do that.
(09:13):
So and I think you see that within corporations a lot of people may join an employee resource group
related to disability in that caregiver identity role and their perspectives are so important
but as someone with the physical disability trying to be as independent as possible
it wasn't a topic that I was ready to address. So as I had a little bit more life experience
(09:41):
I became a mother and we were in the NICU for 21 days and I was given a huge list of appointments
that I had to make for my son after we left the NICU and of course I called every place the next day
to make sure those appointments were in place and it became a full time job trying to manage all
(10:04):
the appointments that we needed to get him to to get the best care possible and I reflect on this
time a lot because of course I want my son to be here more than anything but I can't deny that
it wasn't hard for him the day he was born. There were challenges that we had to manage to make sure
that he could get the best care possible and find the best path to a healthy future. I think
(10:31):
indirectly I became a caregiver for my son who required a lot of medical attention
and after he passed away unfortunately an accident that happened at the hospital
he the accident happened and they were able to get a heart rate and breathing
(10:53):
but he was basically on life support and and we had to make the tough decision after 12 days that it
was time for him to go because he would have no quality of life it was those 12 days where I had to
actively figure out what is the best path forward for him. Yes we're very stressed out about what
exactly happened but we need to continue to look out for the best interest of our son and
(11:16):
and what his future may look like. So after I came back from leave from work my full time job I
was asked if I had any interest in helping form a caregiver support group at our conference which
was happening that summer so it was about five months after my son has passed away I was given the
(11:41):
opportunity to host a coffee conversation a caregiver support group and the coffee conversation was
very much a sub-fest but it was a way to bring people together who are experiencing
whether it's a recent loss or the exhaustion of caring for someone with complex medical issues
or caring for a spouse that acquires a nail miss later in life and it was just a platform for people
(12:08):
to just share and there was no real structure to it so then after that meeting we felt that it was
good use of time for the first time of getting this group together but how do we
turn it into practical steps how can people learn from each other and support each other in the
(12:29):
workplace specifically because that's the topic of interest so it just got me thinking about
the whole topic and really leaning into that identity I was a caregiver for my son even though he's
no longer here and then fast forward to August of 2023 so a year and a half after my son passed away
(12:51):
I had to have major back surgery and I was in rehab for seven weeks and when I was getting ready to
be discharged for rehab I had to set up my own out of hospital plan there was a point in time where I
almost had to go to a skilled nursing facility which would have impacted my mental health even more
(13:13):
but luckily I was able to set up a care plan to have at first I started with a live-in personal
care assistant and more recently I've had someone part-time who helps me perform the essential
things that I need to get done yeah but it's exhausting kind of thinking about the full circle of I was
(13:36):
independent and responsible enough to be a caretaker and now I have to step back and accept the
fact that there are things that I need help with and just the notion of if my son was here I was in
the hospital for 72 days where would he be during that time yes family would step in people would
find a way to make it work but it's scary and think about those two things at the same time yeah
(14:03):
yeah like they you have to put your oxygen mask on first but like how could I be
fully present for him if I needed to take care of myself as well I know people do it it exists
right and that's you know that's that's a big part of why I'm here is to make sure
(14:25):
we all see more publicly and more consistently that that complexity that that that
caregivers are human beings too and we end up in these situations where I'm at whether it's temporary
whether you know we we develop a long-term condition ourselves or what have you that that we need
(14:49):
care ourselves and even before you get to that position like a human being needs care like a human
being you know needs to have some time off during the week to decompress and be able to go for walks
and listen to their favorite music and and talk to their friends and all those things that help keep us
all and living a good life and able to keep giving it all so it's uh
(15:21):
yeah what you went through is is a lot let's let's get further into how those experiences changed
your view of caregiving and that uh you know as a person with a disability um and I also want to
jump in and say that I didn't yet um part of the reason I was excited to have you on as well is I
(15:41):
actually um um only 4.8 myself I have a condition called turner syndrome and uh I don't usually talk
about it out usually in my case think of it as a disability I am more at risk than the average person
to develop a bunch of couldn't medical conditions but I haven't had them yet um I use a stool and I
(16:05):
just don't find that to be a big deal you know um I find that modern cars are adjustable enough
for me uh anyway I'm still at that point where they can work so yeah it's but it's neat to be able to
connect with that um experience I think about it in the summer. I know there are more
(16:27):
I guess more medical diagnoses for that having that condition but uh I think yeah it's as we know
I require accommodations yeah and I think as as we think about kind of my view of caregiving
(16:50):
and the role itself over the past year and a half I've had quite the experience and a variety of
people who have been helping me on this journey and I think it's important I was just recently
reading the book option B by Cheryl Sandberg and I think it's really important to check in with
(17:11):
people and ask how are you today versus how are you because I think sometimes how are you dismisses
the fact that people have a lot going on but I think particularly caregivers but everybody yes
people often say when someone meets someone with a disability they're not just learning from
(17:32):
that like it's it's a mutual relationship where people a topic that recently came up was
reverse mentoring it sometimes it takes someone at a lower level to educate and mentor someone at
higher level just basic life skills about how to be more inclusive of people with disabilities
but I think it's important to do check-ins on both sides because it is an exhausting job and I've
(17:55):
recognized that it is so I think it's very important to have open lines of communication
I know it was harder for me to have an open line of communication with my six-month-old son
but when you can make sure you check in with people and don't make it just about you and everything
that you need find ways like how can you do things I try to set aside time where we can do something fun
(18:20):
rather than it just always having to be labor intensive this is what I need and have it just
feel like a demand relationship one-sided I think is super important because that encourages
and motivates people to want to help you more I think it's important just to make sure
they're equipped to mentally take on the day because it can be exhausting if that person is feeling
(18:46):
down then that kind of sucks the energy out of you as well and then that may impact your healing
we're going to take a break now please stay right here and we'll be right back
thank you for sticking around we continue our conversation I see these things as like like
(19:08):
concentric circles nesting dolls or I see like like I keep I keep coming back to that last scene in
Lord of the Rings where where Sam carries Frodo I can't carry the ring but I can carry you right
what are some ways that you've seen people around you support the you know the caregiver supporting
(19:32):
the carry and then outside of that how are the caregivers receiving support
I think it's making sure that they I've always used agencies so sometimes you can't control those
types of environments but hoping you can provide a sense of reassurance that you're doing a good job
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like the affirmations I think are super important and just even the simple act of saying thank you
rather than just expecting everything I think just acknowledging that it's a it's a very challenging
role especially if there isn't an open line of communication just saying thank you simple can work
(20:17):
yeah people know when it's heartfelt or not you know if you really feel it and you really can say
it in a heartfelt way when you gave me your biography I noticed that you included
a thousand job applications 100 interviews and three temporary jobs as part of your biography can
(20:40):
you speak to why those numbers are important to include and the experiences around those yes so
after I decided I went to move to California I was told by my parents that you need to have a
job in a place to live and I was able to set those things up so I got my one way ticket in August of
2006 and they helped me get settled for about a week out in California and I had the place to live
(21:08):
staying with friends for a bit and then I had a job that I thought was secure and they were still
visiting with me helping me get settled I found out that the job fell through so I needed to figure
out how to stay or how to convince my parents that I still wanted to stay in LA and they told me if
(21:30):
you treat every day like a job looking for a job we'll support that goal in dream of yours since
you're already out here mind as well give it a try so I ended up sending out a thousand resumes when
on 100 interviews over the course of four months had some temporary job assignments and that led to
eventual full-time employment it took about a year total to secure that full-time permanent job
(21:57):
I was seven months a temporary employee before that and then before that I was doing the search
and non-stop interviewing it was exhausting it would be I did treat every day like a job looking for a
job like a job looking for a job there were some days where I was feeling under the weather that maybe
I just took a little bit of a break but very few and far between I just really took that guidance
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very seriously because I wanted people to know that I was serious about finding meaningful
employment these were entry-level jobs that I was applying to it wasn't that I was applying to
CEO jobs and I had nine internships in college that were somewhat related to what I was applying to
it was really the bias that exists I walked in the door and people saw for foot me and did not
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know what that meant for my potential within their workplaces especially if their only perception was
from the media and if it was a negative portrayal they saw right before I walked in that door
that's what they're going to think I'm like I think when people see so few of a population in every
day life they just assume that we're all like that one perception that they see and there's a lot
(23:10):
to it because we all have different upbringings we all have different drive and motivation based
on how our upbringings are if people believed in us we are presenting ourselves in a more professional
respectful manner if people don't know what to think of us maybe we're going to take more risks
(23:32):
and get involved in activities that don't make our population look good and
like a self-self-affilling exactly kind of thing yeah so it's like we're constantly on I remember one
time my my remain in California had said to me you look like you're in some casual clothes and
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you're wanting to go out to this farmer's market maybe you should get a little bit more professional
because you're going to run into someone you know and sure enough I ran into someone I
and I'm glad that I changed from the outfit that I was wearing before and it's just people are
paying attention and when I go out in public I'm representing a whole population of people
(24:17):
and it's a lot of pressure yeah so I think it's just really important to be honest and open
like it's possible that I was interviewing four times a day sometimes it's possible I was exhausted
driving around Los Angeles getting second traffic I probably looked to shoveled and I messed some of
(24:38):
the days but nobody told me that so I was just under the assumption that I didn't get those jobs
because of my short stature and that them doubting my capabilities actually it's that you're trying
so hard I'm working so hard at it right yeah it'd be one thing if I was applying to high level jobs
that just didn't match up with my resume but that wasn't the case so it was very discouraging and
(25:02):
really I've made it my life's duty to give back to the community and build more awareness
among hiring managers to encourage that welcoming environment that allows people to disclose
which accommodations they need to feel successful sure and do that both in the workplaces and in
(25:24):
schools because I think administrators are afraid to ask what people may need to be successful as well
in the schools sure you mentioned clothing for a short person I find that tick tricky
because you're either paying a lot of money to have something custom
sonar altered or wearing something that that doesn't fit right so that's that is
(25:49):
you know in accommodation for some people clothing that fits them right and so it's the environment
they're going to be in yeah so clothing I remember actually the first day I showed up to the
seven-month temp job that finally turned full-time I just I think I got followed by the temp agency
like seven a.m. and I had to be at the office at nine a.m. and I remember I wore this like
(26:15):
round pair of pants a button-down shirt but it was a little snug and I just thought about that day
that was trying to find the fastest outfit possible but it may not have been the best for that first day
and even now just as I'm recovering from surgery I'm less motivated to just throw on something nice
(26:35):
even though it makes me feel good I'm just like oh I'll just be in lounge clothes but I think this next
chapter is really figuring out how can I look more professional going forward because that'll make
me feel better too that makes sense you've you've really given the answer to what was going to be
my next question but do you have anything else to add about why it's important for there to be
disability inclusion in the media and in storytelling yes I think just in general people are likely to
(27:03):
treat people with disabilities based on their last interaction with whichever type of disability
someone has I think with cable and all of the different channels that exist now on TV and streaming
there are more opportunities for positive and negative portrayals of disability there have been a lot
of educational pieces of content but also some that I counteract some reality shows that
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you can tell the producers are encouraging people to be partying and say whatever they feel like
saying and they represent us in not so great way but then there are shows where people are
represented as they should be as professionals as doctors lawyers teachers and those are the
opportunities for people to learn more about our community but then we think about TV and movies
(27:58):
just the broad range of disabilities oftentimes someone is written into a script for a tv show or
movie and then they are played by roles by people who don't have that lived experience with that
disability so then they're building an additional perception whether negative or positive based on
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what they assume the community goes through because that's what they're told to act as and then some of
these big name actors will get awards for playing an inspirational role rather than let's just find
someone who has that lived experience who can really lean into the role and add the proper
characteristics to it and then there are times where you would think you could just have someone with
(28:43):
the disability be a doctor but unless it's written into the script casting directors aren't as
encouraged to make that suggestion so how do we continue to think outside the box because the
disability population is about 25% of the population in the United States and similarly worldwide
why aren't they represented in the proper way when we're putting out content would you say similar for
(29:10):
caregiving around people with disabilities would you say there's fewer representations that I can
think of the caregiver yeah but I think it's still a bit statured for sure to say the best.
Reception is that they're so brave they're working so hard and it's like
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but they're also learning there's such a dynamic that could in a story that could be told about
the mutual relationship I think people forget that people learn from each other and that's how
those relationships get stronger rather than it just be one sided that's true in my case it's more
(29:53):
it varies if it's someone you're paying to help you versus a family member who is
given this role whether whether they want it or not or whether it's whether it's a one person
role or three or four people role exactly you know I think I think there is a difference between
family and outsourcing yeah you meet one person with the disability you see one person's experience
(30:19):
and I think for me at the point in my life I'm in maybe I'm more conscious of it because I was in
the reverse role right it's just something that's important to me having those communication
and maybe in in your scenario the communication happens with other people who could step in
and help out if you needed a break if there's even room for that sure there's a lot of you know learning
(30:43):
I've done about leadership in that sense about trusting myself even when I'm gasslet to think
there's something wrong with me when I can't do more than one person's job with no income you know
and how I interact with the world around my daughter and I both do you have some favorite films or
(31:08):
TV shows that present caregiving and or disability in a positive way like breaking bad was a really
good TV show example where Vince Gilligan one of the producers had someone with cerebral palsy as a
friend growing up so the actor actually has cerebral palsy so I would say shows that
(31:32):
are as authentic the Farley Brothers have a lot of great films champions was a recent film
and something about Mary is that there are some comical films but also inclusive of people with
disabilities I think as far as caregiving goes there are a lot of films that may not be as disability
(31:54):
specific but maybe it's someone caring for an older person there was a film I think me before you
it was based off of a novel and I think there was criticism on it because the person who played
the wheelchair user was not a wheelchair user in real life and then the storyline was that because
(32:17):
of being a wheelchair user they were also suicidal and those narratives are risky because you don't
want to set that perception for the whole community so I think there are some stories where things are
told well and authentic and then others that impact the narrative and the assumption that that's how
the whole disability community is yeah it's easy to forget that for a lot of people that might be
(32:43):
that media might be there touched on to to represent all of what is having a disability like
and so if you only see that one piece which which may be kind of true to somebody's experience somebody
might get very depressed when they have a new diagnosis and they're newly in a wheelchair
(33:04):
that could be a true thing but every narrative right right right but if that's the only thing
you saw that would form your opinion yeah were you gonna say something else no I think that's it
hmm I have one more question um which is I was wondering since you have spoken to so many in-person
(33:27):
audiences and I imagine you had time chances to interact back and forth are there some particularly
insightful or surprising responses that you would want to share with us one time in the school
a kid asked me do you're hearing teeth grow the same oh my stature and I thought I think so
well it's a vast have you ever been attacked by a large dog a common questions are where do you buy
(33:54):
your clothes do you drive do you have a house kind of how do you get around in general I think that
kind of aligns with the the driving question but then even in sports and activities I think if I
(34:15):
talk about them it allows kids to find something to relate to because I think if people assume that
we have more things that aren't in common then in common just because of physical differences
but there are so many more similarities sure so I think it's it's great to hear it I always tell
(34:40):
people no questions offensive or off limits yeah I love the way that you're living your life open and
so willing to share from your heart that way um thank you so much for for coming on love doesn't pay
(35:00):
the bills yeah um you do have another moment if there's anything we didn't cover you particularly
want to add and for you to share where people can find out more about you so you can go to becky
motivates.com and I would just say be kind to yourselves and be kind to each other and treat people
(35:23):
the way that they want to be treated and just give people grace they're doing the best they can
especially when it comes to caregivers regardless of the setup and relationship dynamics
it's important to be kind to each other thank you thank you so much
(35:44):
I'm Lisa Chudian this is love doesn't pay the bills if you've enjoyed the show please tell a friend
thanks for listening
[MUSIC]
(36:04):
[MUSIC]
(upbeat music)
[Music]
(00:12):
Welcome to Love Doesn't Pay the Bills, I'm Lisa Chutey.
My guest today, Becky Curran Kekula, has plenty of experience as both a caregiver.
Being the mother to a beautiful baby boy and also as a recipient of care herself,
her son Jackson, lived just six and a half months.
(00:37):
And Becky writes that, "He was already Mr. Personality, charming everyone he encountered
with giggles and holding the hearts of his adoring family in his mighty grip.
And Jackson brought immense joy into the world, his smile was radiant and unforgettable."
Becky was born with a condra plasia, which is the most common type of short-limbed dwarfism.
(01:01):
She writes that her parents always taught her to keep a positive outlook, no matter how
harsh the outside world may be.
She grew up participating in sports such as sailing, skiing, sockets, swimming amongst her
average height peers.
When people ask her if she likes being a little person, she always has the same answer.
(01:23):
I never want to change, but I want the way the outside world reacts to my difference
to change.
She is a TEDx International motivational speaker and an advocate for disability inclusion.
Becky has a long and very impressive career.
She has worked in the movie industry on disability inclusion.
(01:48):
Her credits include working at Creative Artists Agency, CBS Television Studios, Marketing
Director and co-founding board member of the Catalina Film Festival, which is very cool.
And she founded Disability in Media, which focuses on positive disability inclusion storytelling.
(02:09):
Becky has spoken at over 500 in-person venues and is the employment chair of Little People
of America.
Welcome, Becky.
Hello, thanks for having me.
Yeah.
And I'm so excited to dig in and get beyond those titles and credits, which are really impressive
(02:30):
to what your personal experience has been like.
It sounds like you grew up in a way that you had a lot of encouragement to be very active
in and participate in mainstream life around you and how was that for you?
(02:51):
So to give people a little bit more context, I'm a person with dwarfism, so I stand for
Feet Hall as an adult and as a child, I was still shorter than my average type peers.
There are only about 65,000 people with dwarfism in the United States and about a few hundred
thousand worldwide.
(03:11):
So it's very rare for you to come across a person with dwarfism in everyday life.
So our perceptions have been, and our stories have been told through the media on TV and
in films because that's what most of society is exposed to on a daily basis.
If there's a positive portrayal, people treat us with respect.
(03:33):
If there's a negative portrayal, they may be a little bit more scared to interact with us
or be tempted to point there and laugh at us.
So I grew up in a family where there's no history of dwarfism, which is very common, 80%
of families have no history of dwarfism before someone is welcomed into their family.
(03:54):
I was fortunate that my parents were willing to do as much research as possible to give
me the best possible life that they could.
And I always say that they advocated on my behalf until I was old enough to advocate on my
own behalf.
And some medical doctors gave them advice such as treat her just like you do her average
child or sister, allow her to participate in activities that are of interest or her don't
(04:19):
be afraid to let her fall because that's the way people learn and grow.
That's how it is living in society and I shouldn't be isolated or excluded from any of those
activities that were of interest to me.
So I went to school at the same time as my average type peers.
I participated in soccer, sailing, skiing, swimming.
(04:41):
I then pursued a marketing degree at Providence College and went after a passion for working
behind the scenes in the entertainment industry because that would help change how society
views people like me.
Early on when I started my advocacy, I knew that I wanted to advocate on behalf of all disabilities
(05:02):
because the dwarfism population is so minimal and the message may not get as far.
So if I put us in a group that we do qualify under the Americans with Disabilities Act says
that it's a physical or mental impairment that limits one or more of life's major activities.
We do require stepstools for reaching things, pedal extensions for driving adjustments in
(05:24):
everyday life to make things feel more comfortable and allow us to be successful.
So I've leaned into the disability community and as I've gotten to be older in my turning
40, I've started to lean more into the other aspects of disability that are now part of my
identity, growing up in a world that isn't used to your presence.
(05:49):
You're constantly reminded that you're different, especially in large crowds of people who
don't know how to react or act.
And then the just experience of being an adult, I unfortunately had a son and six months
later he passed away so experience and grief and then my body, I've had several surgeries
(06:12):
due to my dwarfism and one recent surgery was a comprehensive spinal fusion surgery.
Now I'm still working on recovery and gaining my ability to build enough strength to walk successfully
and not giving up on that but it can be tiring some days and it definitely impacts your mental health.
(06:33):
Yeah. So first of all my condolences on your son.
And I wanted one of the reasons I was excited to have you on is because you have such a wide variety
of experiencing care as a recipient and also providing care. I think so often we divide people
(06:55):
into these categories. They're either the person needing to receive care or they're the caregiver
and we don't see the strengths and talents of the person receiving care.
We don't see the needs or limitations of the person giving care.
So I think it's I'm interested to hear what you have to speak to,
(07:17):
you know, making sure that we see all people with with both their skills and talents and
their limitations or needs.
Yes so it was interesting because I never thought I actually had as someone with the
physical disability who was basically encouraged by my parents to go out into the world and live.
(07:44):
Once I decided after college that I wanted to move across the country from Boston to Los Angeles
they said go for it so long as you have a job in a place to live. It was really hard for them to
admit that they were okay with me going across the country because
it's scary for any parent whether someone has a disability or not.
(08:06):
But it really was a true sign of my eagerness for independence and when I got out to California
a lot of people went up to my parents and said how could you let her do that?
How could they not?
If you have some opportunities and you're ready to go then yeah and I look back even to like when
(08:27):
I was getting ready for college and even as I was applying to work at the many jobs I applied to
out in LA I took my parents out of the equation as soon as I could so I could make my own decisions
and have my own experiences and they were always there ready willing and able to help me
but I didn't want them to be the reason that I got a job or just like that it was a favor that people
(08:52):
were doing. I wanted to do this on my own. So I had a stigma a little bit around caregivers
just because of lack of experience and I thought these people are speaking on behalf of our population
and they don't actually know what we may want or need. Which can be true sometimes I can do that.
(09:13):
So and I think you see that within corporations a lot of people may join an employee resource group
related to disability in that caregiver identity role and their perspectives are so important
but as someone with the physical disability trying to be as independent as possible
it wasn't a topic that I was ready to address. So as I had a little bit more life experience
(09:41):
I became a mother and we were in the NICU for 21 days and I was given a huge list of appointments
that I had to make for my son after we left the NICU and of course I called every place the next day
to make sure those appointments were in place and it became a full time job trying to manage all
(10:04):
the appointments that we needed to get him to to get the best care possible and I reflect on this
time a lot because of course I want my son to be here more than anything but I can't deny that
it wasn't hard for him the day he was born. There were challenges that we had to manage to make sure
that he could get the best care possible and find the best path to a healthy future. I think
(10:31):
indirectly I became a caregiver for my son who required a lot of medical attention
and after he passed away unfortunately an accident that happened at the hospital
he the accident happened and they were able to get a heart rate and breathing
(10:53):
but he was basically on life support and and we had to make the tough decision after 12 days that it
was time for him to go because he would have no quality of life it was those 12 days where I had to
actively figure out what is the best path forward for him. Yes we're very stressed out about what
exactly happened but we need to continue to look out for the best interest of our son and
(11:16):
and what his future may look like. So after I came back from leave from work my full time job I
was asked if I had any interest in helping form a caregiver support group at our conference which
was happening that summer so it was about five months after my son has passed away I was given the
(11:41):
opportunity to host a coffee conversation a caregiver support group and the coffee conversation was
very much a sub-fest but it was a way to bring people together who are experiencing
whether it's a recent loss or the exhaustion of caring for someone with complex medical issues
or caring for a spouse that acquires a nail miss later in life and it was just a platform for people
(12:08):
to just share and there was no real structure to it so then after that meeting we felt that it was
good use of time for the first time of getting this group together but how do we
turn it into practical steps how can people learn from each other and support each other in the
(12:29):
workplace specifically because that's the topic of interest so it just got me thinking about
the whole topic and really leaning into that identity I was a caregiver for my son even though he's
no longer here and then fast forward to August of 2023 so a year and a half after my son passed away
(12:51):
I had to have major back surgery and I was in rehab for seven weeks and when I was getting ready to
be discharged for rehab I had to set up my own out of hospital plan there was a point in time where I
almost had to go to a skilled nursing facility which would have impacted my mental health even more
(13:13):
but luckily I was able to set up a care plan to have at first I started with a live-in personal
care assistant and more recently I've had someone part-time who helps me perform the essential
things that I need to get done yeah but it's exhausting kind of thinking about the full circle of I was
(13:36):
independent and responsible enough to be a caretaker and now I have to step back and accept the
fact that there are things that I need help with and just the notion of if my son was here I was in
the hospital for 72 days where would he be during that time yes family would step in people would
find a way to make it work but it's scary and think about those two things at the same time yeah
(14:03):
yeah like they you have to put your oxygen mask on first but like how could I be
fully present for him if I needed to take care of myself as well I know people do it it exists
right and that's you know that's that's a big part of why I'm here is to make sure
(14:25):
we all see more publicly and more consistently that that complexity that that that
caregivers are human beings too and we end up in these situations where I'm at whether it's temporary
whether you know we we develop a long-term condition ourselves or what have you that that we need
(14:49):
care ourselves and even before you get to that position like a human being needs care like a human
being you know needs to have some time off during the week to decompress and be able to go for walks
and listen to their favorite music and and talk to their friends and all those things that help keep us
all and living a good life and able to keep giving it all so it's uh
(15:21):
yeah what you went through is is a lot let's let's get further into how those experiences changed
your view of caregiving and that uh you know as a person with a disability um and I also want to
jump in and say that I didn't yet um part of the reason I was excited to have you on as well is I
(15:41):
actually um um only 4.8 myself I have a condition called turner syndrome and uh I don't usually talk
about it out usually in my case think of it as a disability I am more at risk than the average person
to develop a bunch of couldn't medical conditions but I haven't had them yet um I use a stool and I
(16:05):
just don't find that to be a big deal you know um I find that modern cars are adjustable enough
for me uh anyway I'm still at that point where they can work so yeah it's but it's neat to be able to
connect with that um experience I think about it in the summer. I know there are more
(16:27):
I guess more medical diagnoses for that having that condition but uh I think yeah it's as we know
I require accommodations yeah and I think as as we think about kind of my view of caregiving
(16:50):
and the role itself over the past year and a half I've had quite the experience and a variety of
people who have been helping me on this journey and I think it's important I was just recently
reading the book option B by Cheryl Sandberg and I think it's really important to check in with
(17:11):
people and ask how are you today versus how are you because I think sometimes how are you dismisses
the fact that people have a lot going on but I think particularly caregivers but everybody yes
people often say when someone meets someone with a disability they're not just learning from
(17:32):
that like it's it's a mutual relationship where people a topic that recently came up was
reverse mentoring it sometimes it takes someone at a lower level to educate and mentor someone at
higher level just basic life skills about how to be more inclusive of people with disabilities
but I think it's important to do check-ins on both sides because it is an exhausting job and I've
(17:55):
recognized that it is so I think it's very important to have open lines of communication
I know it was harder for me to have an open line of communication with my six-month-old son
but when you can make sure you check in with people and don't make it just about you and everything
that you need find ways like how can you do things I try to set aside time where we can do something fun
(18:20):
rather than it just always having to be labor intensive this is what I need and have it just
feel like a demand relationship one-sided I think is super important because that encourages
and motivates people to want to help you more I think it's important just to make sure
they're equipped to mentally take on the day because it can be exhausting if that person is feeling
(18:46):
down then that kind of sucks the energy out of you as well and then that may impact your healing
we're going to take a break now please stay right here and we'll be right back
thank you for sticking around we continue our conversation I see these things as like like
(19:08):
concentric circles nesting dolls or I see like like I keep I keep coming back to that last scene in
Lord of the Rings where where Sam carries Frodo I can't carry the ring but I can carry you right
what are some ways that you've seen people around you support the you know the caregiver supporting
(19:32):
the carry and then outside of that how are the caregivers receiving support
I think it's making sure that they I've always used agencies so sometimes you can't control those
types of environments but hoping you can provide a sense of reassurance that you're doing a good job
(19:57):
like the affirmations I think are super important and just even the simple act of saying thank you
rather than just expecting everything I think just acknowledging that it's a it's a very challenging
role especially if there isn't an open line of communication just saying thank you simple can work
(20:17):
yeah people know when it's heartfelt or not you know if you really feel it and you really can say
it in a heartfelt way when you gave me your biography I noticed that you included
a thousand job applications 100 interviews and three temporary jobs as part of your biography can
(20:40):
you speak to why those numbers are important to include and the experiences around those yes so
after I decided I went to move to California I was told by my parents that you need to have a
job in a place to live and I was able to set those things up so I got my one way ticket in August of
2006 and they helped me get settled for about a week out in California and I had the place to live
(21:08):
staying with friends for a bit and then I had a job that I thought was secure and they were still
visiting with me helping me get settled I found out that the job fell through so I needed to figure
out how to stay or how to convince my parents that I still wanted to stay in LA and they told me if
(21:30):
you treat every day like a job looking for a job we'll support that goal in dream of yours since
you're already out here mind as well give it a try so I ended up sending out a thousand resumes when
on 100 interviews over the course of four months had some temporary job assignments and that led to
eventual full-time employment it took about a year total to secure that full-time permanent job
(21:57):
I was seven months a temporary employee before that and then before that I was doing the search
and non-stop interviewing it was exhausting it would be I did treat every day like a job looking for a
job like a job looking for a job there were some days where I was feeling under the weather that maybe
I just took a little bit of a break but very few and far between I just really took that guidance
(22:23):
very seriously because I wanted people to know that I was serious about finding meaningful
employment these were entry-level jobs that I was applying to it wasn't that I was applying to
CEO jobs and I had nine internships in college that were somewhat related to what I was applying to
it was really the bias that exists I walked in the door and people saw for foot me and did not
(22:46):
know what that meant for my potential within their workplaces especially if their only perception was
from the media and if it was a negative portrayal they saw right before I walked in that door
that's what they're going to think I'm like I think when people see so few of a population in every
day life they just assume that we're all like that one perception that they see and there's a lot
(23:10):
to it because we all have different upbringings we all have different drive and motivation based
on how our upbringings are if people believed in us we are presenting ourselves in a more professional
respectful manner if people don't know what to think of us maybe we're going to take more risks
(23:32):
and get involved in activities that don't make our population look good and
like a self-self-affilling exactly kind of thing yeah so it's like we're constantly on I remember one
time my my remain in California had said to me you look like you're in some casual clothes and
(23:54):
you're wanting to go out to this farmer's market maybe you should get a little bit more professional
because you're going to run into someone you know and sure enough I ran into someone I
and I'm glad that I changed from the outfit that I was wearing before and it's just people are
paying attention and when I go out in public I'm representing a whole population of people
(24:17):
and it's a lot of pressure yeah so I think it's just really important to be honest and open
like it's possible that I was interviewing four times a day sometimes it's possible I was exhausted
driving around Los Angeles getting second traffic I probably looked to shoveled and I messed some of
(24:38):
the days but nobody told me that so I was just under the assumption that I didn't get those jobs
because of my short stature and that them doubting my capabilities actually it's that you're trying
so hard I'm working so hard at it right yeah it'd be one thing if I was applying to high level jobs
that just didn't match up with my resume but that wasn't the case so it was very discouraging and
(25:02):
really I've made it my life's duty to give back to the community and build more awareness
among hiring managers to encourage that welcoming environment that allows people to disclose
which accommodations they need to feel successful sure and do that both in the workplaces and in
(25:24):
schools because I think administrators are afraid to ask what people may need to be successful as well
in the schools sure you mentioned clothing for a short person I find that tick tricky
because you're either paying a lot of money to have something custom
sonar altered or wearing something that that doesn't fit right so that's that is
(25:49):
you know in accommodation for some people clothing that fits them right and so it's the environment
they're going to be in yeah so clothing I remember actually the first day I showed up to the
seven-month temp job that finally turned full-time I just I think I got followed by the temp agency
like seven a.m. and I had to be at the office at nine a.m. and I remember I wore this like
(26:15):
round pair of pants a button-down shirt but it was a little snug and I just thought about that day
that was trying to find the fastest outfit possible but it may not have been the best for that first day
and even now just as I'm recovering from surgery I'm less motivated to just throw on something nice
(26:35):
even though it makes me feel good I'm just like oh I'll just be in lounge clothes but I think this next
chapter is really figuring out how can I look more professional going forward because that'll make
me feel better too that makes sense you've you've really given the answer to what was going to be
my next question but do you have anything else to add about why it's important for there to be
disability inclusion in the media and in storytelling yes I think just in general people are likely to
(27:03):
treat people with disabilities based on their last interaction with whichever type of disability
someone has I think with cable and all of the different channels that exist now on TV and streaming
there are more opportunities for positive and negative portrayals of disability there have been a lot
of educational pieces of content but also some that I counteract some reality shows that
(27:32):
you can tell the producers are encouraging people to be partying and say whatever they feel like
saying and they represent us in not so great way but then there are shows where people are
represented as they should be as professionals as doctors lawyers teachers and those are the
opportunities for people to learn more about our community but then we think about TV and movies
(27:58):
just the broad range of disabilities oftentimes someone is written into a script for a tv show or
movie and then they are played by roles by people who don't have that lived experience with that
disability so then they're building an additional perception whether negative or positive based on
(28:20):
what they assume the community goes through because that's what they're told to act as and then some of
these big name actors will get awards for playing an inspirational role rather than let's just find
someone who has that lived experience who can really lean into the role and add the proper
characteristics to it and then there are times where you would think you could just have someone with
(28:43):
the disability be a doctor but unless it's written into the script casting directors aren't as
encouraged to make that suggestion so how do we continue to think outside the box because the
disability population is about 25% of the population in the United States and similarly worldwide
why aren't they represented in the proper way when we're putting out content would you say similar for
(29:10):
caregiving around people with disabilities would you say there's fewer representations that I can
think of the caregiver yeah but I think it's still a bit statured for sure to say the best.
Reception is that they're so brave they're working so hard and it's like
(29:31):
but they're also learning there's such a dynamic that could in a story that could be told about
the mutual relationship I think people forget that people learn from each other and that's how
those relationships get stronger rather than it just be one sided that's true in my case it's more
(29:53):
it varies if it's someone you're paying to help you versus a family member who is
given this role whether whether they want it or not or whether it's whether it's a one person
role or three or four people role exactly you know I think I think there is a difference between
family and outsourcing yeah you meet one person with the disability you see one person's experience
(30:19):
and I think for me at the point in my life I'm in maybe I'm more conscious of it because I was in
the reverse role right it's just something that's important to me having those communication
and maybe in in your scenario the communication happens with other people who could step in
and help out if you needed a break if there's even room for that sure there's a lot of you know learning
(30:43):
I've done about leadership in that sense about trusting myself even when I'm gasslet to think
there's something wrong with me when I can't do more than one person's job with no income you know
and how I interact with the world around my daughter and I both do you have some favorite films or
(31:08):
TV shows that present caregiving and or disability in a positive way like breaking bad was a really
good TV show example where Vince Gilligan one of the producers had someone with cerebral palsy as a
friend growing up so the actor actually has cerebral palsy so I would say shows that
(31:32):
are as authentic the Farley Brothers have a lot of great films champions was a recent film
and something about Mary is that there are some comical films but also inclusive of people with
disabilities I think as far as caregiving goes there are a lot of films that may not be as disability
(31:54):
specific but maybe it's someone caring for an older person there was a film I think me before you
it was based off of a novel and I think there was criticism on it because the person who played
the wheelchair user was not a wheelchair user in real life and then the storyline was that because
(32:17):
of being a wheelchair user they were also suicidal and those narratives are risky because you don't
want to set that perception for the whole community so I think there are some stories where things are
told well and authentic and then others that impact the narrative and the assumption that that's how
the whole disability community is yeah it's easy to forget that for a lot of people that might be
(32:43):
that media might be there touched on to to represent all of what is having a disability like
and so if you only see that one piece which which may be kind of true to somebody's experience somebody
might get very depressed when they have a new diagnosis and they're newly in a wheelchair
(33:04):
that could be a true thing but every narrative right right right but if that's the only thing
you saw that would form your opinion yeah were you gonna say something else no I think that's it
hmm I have one more question um which is I was wondering since you have spoken to so many in-person
(33:27):
audiences and I imagine you had time chances to interact back and forth are there some particularly
insightful or surprising responses that you would want to share with us one time in the school
a kid asked me do you're hearing teeth grow the same oh my stature and I thought I think so
well it's a vast have you ever been attacked by a large dog a common questions are where do you buy
(33:54):
your clothes do you drive do you have a house kind of how do you get around in general I think that
kind of aligns with the the driving question but then even in sports and activities I think if I
(34:15):
talk about them it allows kids to find something to relate to because I think if people assume that
we have more things that aren't in common then in common just because of physical differences
but there are so many more similarities sure so I think it's it's great to hear it I always tell
(34:40):
people no questions offensive or off limits yeah I love the way that you're living your life open and
so willing to share from your heart that way um thank you so much for for coming on love doesn't pay
(35:00):
the bills yeah um you do have another moment if there's anything we didn't cover you particularly
want to add and for you to share where people can find out more about you so you can go to becky
motivates.com and I would just say be kind to yourselves and be kind to each other and treat people
(35:23):
the way that they want to be treated and just give people grace they're doing the best they can
especially when it comes to caregivers regardless of the setup and relationship dynamics
it's important to be kind to each other thank you thank you so much
(35:44):
I'm Lisa Chudian this is love doesn't pay the bills if you've enjoyed the show please tell a friend
thanks for listening
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(36:04):
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