What does a truly accessible world look like
[Music]
[Music]
so when i was in college
i decided to join a gym and i was a
little nervous because i was afraid they
wouldn’t have enough equipment for my
upper body
and i decided to go on a tour of a local
gym with a very nice gentleman
and asked him if they had equipment
specifically for
arms well he looked at me and he said
yeah we got some stuff for arms
but you don’t even have to do your arms
you could do a full
leg day well of course i’m sitting there
thinking
um should i tell him well the very
non-confrontational side of me decided
not to say anything
so i ended up spending the next 30
minutes doing a tour of the
full spectrum of leg presses after which
he looked at me and said
your legs are going to get nice and
beefy just you wait
well i’m still waiting but the problem
is
so many people are scared to ask those
with disabilities
what exactly they’re able to do or how
exactly
they’re able to help them because they
don’t want to say the wrong thing
and the problem is this causes so many
misconceptions
and these small misconceptions compound
into large-scale societal issues
that can drastically affect the lives of
millions with disabilities
so i’m here today to show a major
insight that i have had through my
journey
and how i believe it can create a more
inclusive future for us all
now the crazy thing is i didn’t really
even think about the concept of
disability
for most of my childhood and so the
first time that i did think about it
is very vivid in my mind i was watching
a movie
late at night with my younger sister and
it was about this little boy
in a wheelchair and she fell asleep
halfway through the movie
but i stayed up awake that night
thinking about this little boy and
what he must be going through and i
thought to myself wow
that must suck
i am so glad that’s not me well
exactly one week later to the day
my mom and i were in a car accident and
a week after the accident i woke up in a
hospital
from a coma and had no idea where i was
i couldn’t move my legs and i was
absolutely
terrified and a few days later in the
icu
after finding out that my injury was
permanent
i looked at my mom and i said mommy i’m
not madeline anymore
and it’s like my 10 year old self
had this very strong sense that the loss
of part of my body
meant a loss of my sense of self and
even at such a young
age i felt an instinct that i was
no longer worthy to fit into the tribe
anymore
that i didn’t belong so let me ask you
this
if you were to be in an accident tonight
and become paralyzed
what would be your biggest fear going
back into your life
the obvious thing to say would be a loss
of freedom of
movement or the weight of the physical
barriers around you
but nobody prepares you for the feeling
of going back to school
and watching all of your classmates play
on the playground
while you sit on the sidelines or being
in a job interview and having the
manager tell you that they can’t hire
you
because you can’t physically do the job
or
even being on a date and having an
accident in the guy’s car
and being so humiliated that you fake
spill a drink on yourself just so you
can avoid
any super awkward first day explanations
not that this happened to me or anything
but the core of these experiences
mimics the feeling i had after waking up
in the hospital the feeling of shame the
feeling
of not belonging anymore i recently
asked the same question i asked you to
my social media
network about what would you do if you
became paralyzed what would be afraid of
and some of the answers truly surprised
me people said things like
being afraid of losing friends and
family because of the disability
what would my purpose in life be with my
career and life
changing so drastically people seeing me
as disabled and that i can’t do anything
that no one would love me who would want
to be in a relationship with someone who
represented such a huge responsibility
after reading these comments i became a
little curious so i went to my boyfriend
and i asked him
the same question and keep in mind we
have been together for three years so
he knows everything about what it’s like
to be paralyzed
but he looked at me and he said i’d be
afraid that you leave me
and of course i was like wait
wait a second you would be afraid that i
would leave you
if you were paralyzed and he said yes
i wouldn’t be able to take care of you
the same and that would absolutely
kill me when i asked this question
i expected people to focus on the
physical and environmental
challenges of using a wheelchair but
what i didn’t expect was for people to
so
deeply empathize with this sense of
shame
of not fitting back to your community
and the
interesting thing is that
i felt this sense of shame was validated
in my life when i went back into my
community
there were members of my family who said
that they didn’t feel comfortable
being around me anymore because of my
injury
when i went back to my private school
they
said that they didn’t feel comfortable
having me there as a student anymore
because of the challenges that i posed
we even went back to church and
they brought me up to the front and took
my hands
and told me if i had enough faith i’d be
able to stand
well as you can probably imagine i was
not
able to stand and so they said
that my injury must be a punishment from
god
and looking back now i can clearly see
that if these people are able to say
things like that to us
a young girl who’s recently injured then
they’re probably going through some
pretty dark things in their own life
but i didn’t know that at the time i
didn’t know that their reaction
was based on the fear of the different
and unknown
i thought that i was the problem and so
it was it was like that i was in this
perfect
bubble and i had no idea that my
acceptance into this bubble was so
conditional
and that the second i became flawed the
bubble popped
now as i grew older and became more
independent
i decided i was going to escape not only
the physical barriers around me but the
attitudinal ones
i wanted to find what it took to achieve
true accessibility in society
not just with ramps and elevators but
with the things that you can’t measure
a place where you’re free from the shame
of being different
and so it became my mission that i was
going to prove to myself and to everyone
around me
that i was worthy of acceptance
and that i didn’t have to be ashamed so
one of my first adventures
was flying to germany and of course on
this first big step outside of my
comfort zone
they briefly misplaced my wheelchair and
i can tell you there is no more
terrifying prospect
than flying to a foreign country for the
first time
completely alone well cheerless i also
decided to climb the mountain beside
mount rushmore
i had met this amazing park ranger and
his wife who brought me into their home
they trained me on a ranger climbing
course and helped me to ascend
the 200-foot mountainside i even decided
to go swimming with sharks
thought it was going to be in a cage but
they took us out in the middle of the
ocean
pushed us out of the boat and no cage
was offered so
when we were training for the sharks
when they said
not to kick our legs too much or else
the sharks might think we’re seals
and i was like yes i got this well
there was still one shark that was quite
interested in me and before i knew it i
looked down
and it was jutting up toward me mouth
open
rows of teeth and all i could think of
in that moment was
please just go for the legs go for the
legs
luckily it didn’t come to that but i
was able to continue on into pageantry
and i can assure you
it was so much scarier than the shark
thing but
i was continuing this goal of
challenging the question
of belonging could someone like me
with a very obvious physical disability
fit in in a part of society that tends
to so harshly judge people for their
physical form
well after years of pushing boundaries
and testing my limits
i came to a very surprising realization
that there are times in my life when i
am dependent on others
there are times in my life when i’m
completely independent
but it wasn’t necessarily the
independent times
when that shame went away it was the
times when i was able to work
interdependently with others
it was when i was in germany and my
classmates helped me to create a map
of all the accessible bathrooms in the
town so that i was able to go
on my own but when there were times when
my body was ready for immediate action
they were always right there
ready to carry me and it was the time
when i worked with the park rangers
they had never trained a paraplegic for
that kind of climb before
but together we worked out tricks for me
to be able to use my arms instead of my
legs to work around the sharp
rocks that i would encounter on my climb
and it was the time in pageantry
when i was the first girl in a
wheelchair to ever make
top five in a miss usa state pageant
and was able to work with people around
the country and around the world
to create campaigns to redefine
traditional beauty standards
and after this awareness of
what interdependence can do i was
getting so excited but
i realized that we don’t necessarily
live in a society
that focuses on interdependence for
people with disabilities
there are options for people to become
dependent
on our government on caregivers
and then there are also options for
people to become independent because
of incredible disability laws and
initiatives
but the problem is when you create a
society
that forces people with a limited
ability
to either perform at full capacity
or not perform at all you inevitably
create a system
that shames those who are different
because
if you force them to perform at full
capacity
the disability will at some point come
into play
and they’ll have an environment of
criticism and shame
but if you don’t allow them to perform
at all
they’ll feel like they’re not
contributing to society and that they
have no purpose in life
but when you’re able to use this tool of
interdependence
that fear and shame of being different
begin to melt
away and interdependence at its core is
when two or more people are able to work
together
to create the best outcome possible
with all of the assets at hand and if
we’re able to use this
tool on a national scale it could
drastically affect the way
that our society sees people with
disabilities
and help people with disabilities see
themselves
employers wouldn’t think of undue
hardship when hiring those with
disabilities
but instead we think about the amazing
assets that they could bring
to their company businesses wouldn’t be
afraid
to create customized services for those
with disabilities because they would
realize they could have a solution based
mindset
instead of simply saying there’s nothing
we could do
governments would rethink their policies
for those with disabilities
because they realize that they shouldn’t
punish
those who want to work to the extent of
their
ability even if they can’t work full
time
and people people would begin to
destigmatize those who are different
because they would realize
that we all have disabilities we all
have weaknesses
and this journey of life is not meant to
be walked
or wheeled alone that we need to come
together
to carry each other’s burdens and to
help build each other up to be the best
we can be through our weaknesses today
marks the 17-year anniversary of my car
accident
and i wanted to give this talk not only
to honor my journey
and my transformation but to also show
that my challenges can be used for
something good
and that we can create a transformation
in society
to where we can look at all humans no
matter how they are packaged
as equal members of society
and that our abilities together
can be so much more powerful than they
could ever be apart
you