TEDWomen 2019
Cara E. Yar Khan: The beautiful balance between courage and fear
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After being diagnosed with a rare genetic condition that deteriorates muscle, Cara E. Yar Khan was told she'd have to limit her career ambitions and dial down her dreams. She ignored that advice and instead continued to pursue her biggest ambitions. In this powerful, moving talk, she shares her philosophy for working on the projects that matter to her most -- while letting courage and fear coexist. Watch for heart-stopping, vertigo-inducing footage of a trip that shows her living her theory to the full.
Cara E. Yar Khan - Human rights and disability activist
Cara E. Yar Khan is an international human rights advocate promoting the inclusion of people with disabilities within all facets of society. Full bio
Cara E. Yar Khan is an international human rights advocate promoting the inclusion of people with disabilities within all facets of society. Full bio
Double-click the English transcript below to play the video.
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When we're young, we're innocently brave,
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and we fearlessly dream
about what our lives might be like.
about what our lives might be like.
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Maybe you wanted to be an astronaut
or a rocket scientist.
or a rocket scientist.
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Maybe you dreamed
of traveling to every continent.
of traveling to every continent.
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Since I was very young,
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I dreamed of working
for the United Nations
for the United Nations
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in some of the most difficult
countries in the world.
countries in the world.
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And thanks to a lot of courage
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that dream came true.
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But here's the thing about courage:
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it doesn't just appear
whenever we need it.
whenever we need it.
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It's the result of tough
reflection and real work,
reflection and real work,
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involving the balance
between fear and bravery.
between fear and bravery.
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Without fear, we'll do foolish things.
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And without courage,
we'll never step into the unknown.
we'll never step into the unknown.
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The balance of the two
is where the magic lies,
is where the magic lies,
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and it's a balance
we all deal with every day.
we all deal with every day.
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First, a word about my fancy wheels.
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I haven't always used a wheelchair.
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I grew up like many of you,
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running, jumping and dancing.
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I love to dance.
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However, in my mid-twenties,
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I began to experience
a series of inexplicable falls.
a series of inexplicable falls.
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And a few years later,
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I was diagnosed with a recessive
genetic condition
genetic condition
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called hereditary inclusion body myopathy,
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or HIBM.
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It's a progressive muscle wasting disease
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that affects all of my muscles
from head to toe.
from head to toe.
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HIBM is very rare.
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In the United States there are
less than 200 people diagnosed.
less than 200 people diagnosed.
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To date, there is
no proved treatment or cure,
no proved treatment or cure,
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and within 10 to 15 years of its onset,
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HIBM typically leads to quadriplegia,
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which is why I now use a wheelchair.
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When I was first diagnosed,
everything changed.
everything changed.
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It was frightening news
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because I had no experience
with chronic illness or disabilities.
with chronic illness or disabilities.
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And I had no idea
how the disease might progress.
how the disease might progress.
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But what was most disheartening
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was to listen to other people advise me
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to limit my ambitions and dreams,
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and to change my expectations
of what to expect from life.
of what to expect from life.
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"You should quit
your international career."
your international career."
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"No one will marry you this way."
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"You would be selfish to have children."
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The fact that someone who wasn't me
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was putting limitations
on my dreams and ambitions
on my dreams and ambitions
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was preposterous.
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And unacceptable.
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So I ignored them.
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(Cheers and applause)
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I did get married.
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And I decided for myself
not to have children.
not to have children.
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And I continued my career
with the United Nations
with the United Nations
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after my diagnosis,
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going to work for two years in Angola,
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a country recovering
from 27 years of brutal civil war.
from 27 years of brutal civil war.
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However, it would be another five years
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until I officially declared
my diagnosis to my employer.
my diagnosis to my employer.
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Because I was afraid
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that they would question my capacity
to manage and I'd lose my job.
to manage and I'd lose my job.
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I was working in countries
where polio had been common,
where polio had been common,
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so when I overheard someone say
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that they thought
I might have survived polio,
I might have survived polio,
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I thought my secret was safe.
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No one asked why I was limping.
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So I didn't say anything.
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It took me over a decade
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to internalize the severity of HIBM,
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even as basic tasks and functions
became increasingly difficult.
became increasingly difficult.
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Yet, I continued to pursue my dream
of working all over the world,
of working all over the world,
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and was even appointed
as a disability focal point
as a disability focal point
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for UNICEF in Haiti,
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where I served for two years
after the devastating 2010 earthquake.
after the devastating 2010 earthquake.
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And then my work brought me
to the United States.
to the United States.
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And even as the disease
progressed significantly
progressed significantly
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and I needed leg braces
and a walker to get around,
and a walker to get around,
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I still longed for adventure.
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And this time,
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I started dreaming
of a grand outdoor adventure.
of a grand outdoor adventure.
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And what's more grand
than the Grand Canyon?
than the Grand Canyon?
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Did you know that for every
five million people who visit the Rim
five million people who visit the Rim
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only one percent go down
to the canyon's base?
to the canyon's base?
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I wanted to be a part of that one percent.
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The only thing is --
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(Applause)
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The only thing is that the Grand Canyon
isn't exactly accessible.
isn't exactly accessible.
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I was going to need some assistance
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to get down the 5,000-foot descent
of vertical loose terrain.
of vertical loose terrain.
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Now, when I face obstacles,
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fear doesn't necessarily
immediately set in
immediately set in
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because I assume that one way or another,
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I'll figure it out.
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And in this case, my thought was,
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well, if I can't walk down,
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I could learn to ride a horse.
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So that's what I did.
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And with that fateful decision
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began a four-year commitment,
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tossing back and forth
between fear and courage
between fear and courage
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to undertake a 12-day expedition.
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Four days on horseback
to cross Grand Canyon rim to rim,
to cross Grand Canyon rim to rim,
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and eight days rafting
150 miles of the Colorado River,
150 miles of the Colorado River,
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all with a film crew in tow.
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Spoiler alert -- we made it.
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But not without showing me
how my deepest fear
how my deepest fear
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can somehow manifest
a mirror response of equal courage.
a mirror response of equal courage.
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On April 13, 2018,
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sitting eight feet above the ground,
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riding a mustang horse named Sheriff,
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my first impression of Grand Canyon
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was one of shock and terror.
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Who knew I had a fear of heights.
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(Laughter)
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But there was no giving up now.
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I mustered up every ounce
of courage inside me
of courage inside me
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to not let my fear get the best of me.
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Embarking on the South Rim,
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all I could do to keep myself composed
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was to breathe deeply,
stare up into the clouds
stare up into the clouds
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and focus on my team's voices.
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But then, in the first hour,
disaster struck.
disaster struck.
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Unable to hold myself
upright in the saddle,
upright in the saddle,
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going down an oversized step,
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I flung forward and smacked my face
on the back of the horse's head.
on the back of the horse's head.
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There was panic,
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my head hurt fiercely,
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but the path was too narrow
for us to dismount.
for us to dismount.
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Only at the halfway point at 2,300 feet,
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at least another two hours down,
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could we stop and remove my helmet
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and see the egg-sized bump
protruding from my forehead.
protruding from my forehead.
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For all of that planning and gear,
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how is it that we didn't
even have an ice pack?
even have an ice pack?
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(Laughter)
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Luckily for all of us,
the swelling came outwards,
the swelling came outwards,
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and would drain into my face
as two fantastic black eyes
as two fantastic black eyes
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which is an amazing way to look
in a documentary film.
in a documentary film.
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(Laughter)
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(Applause and cheers)
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This was not an easy, peaceful journey,
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and yet, that was exactly the point.
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Even though I was afraid
to get back into the saddle,
to get back into the saddle,
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I got back in.
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The descent alone to the canyon floor
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took a total of 10 hours
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and that was just day one of four riding.
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Next came the mighty rapids.
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The Colorado River in the Grand Canyon
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has some of the highest
white water in the country.
white water in the country.
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And just to be prepared
in case we should capsize,
in case we should capsize,
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we'd practice having me swim
through a smaller rapid.
through a smaller rapid.
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And it's safe to say it wasn't glamorous.
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(Laughter)
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I took my breath
in the wrong part of the wave,
in the wrong part of the wave,
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choked on river water
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and was unable to steer myself.
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Yes, it was scary,
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but it was also fantastic.
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Waterfalls, slick canyons
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and a couple billion years of bedrock
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that seemed to change color
throughout the day.
throughout the day.
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The Grand Canyon is true wilderness
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and worthy of all of its accolades.
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(Applause)
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The expedition,
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all that planning and the trip itself,
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showed me a level of fear
I had never experienced before.
I had never experienced before.
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But more importantly,
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it showed me how boldly
courageous I can be.
courageous I can be.
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My Grand Canyon journey was not easy.
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This was not a vision
of an Amazonian woman
of an Amazonian woman
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effortlessly making her way
through epic scenery.
through epic scenery.
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This was me crying,
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exhausted and beat up with two black eyes.
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It was scary,
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it was stressful,
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it was exhilarating.
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Now that the trip is over,
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it's easy to be blasé
about what we achieved.
about what we achieved.
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I know I want to raft the river again.
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This time, all 277 miles of it.
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(Applause)
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But I also know that I would never do
the horseback-riding part again.
the horseback-riding part again.
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(Laughter)
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It's just too dangerous.
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And that's my real point.
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I'm not just here
to show you my film footage.
to show you my film footage.
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I'm here to remind us all
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that life is really just a lesson
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in finding the balance
between fear and courage.
between fear and courage.
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And understanding what is
and what isn't a good idea.
and what isn't a good idea.
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(Laughter)
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Life is already scary,
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so for our dreams to come true,
we need to be brave.
we need to be brave.
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In facing my fears
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and finding the courage
to push through them,
to push through them,
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I swear my life has been extraordinary.
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So live big
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and try to let your courage
outweigh your fear.
outweigh your fear.
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You never know where it might take you.
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Thank you.
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(Applause and cheers)
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ABOUT THE SPEAKER
Cara E. Yar Khan - Human rights and disability activistCara E. Yar Khan is an international human rights advocate promoting the inclusion of people with disabilities within all facets of society.
Why you should listen
Born in India and raised in Canada, Cara E. Yar Khan has always loved helping people in need, spending time with loved ones, traveling and Latin dancing. Leveraging a knack for languages and a curiosity for different cultures, she earned a Master's degree in public policy and went on to live in Ecuador, Panama, Angola, China, Madagascar, Mozambique, Thailand and Haiti. At age 30, she was diagnosed with a rare muscle-wasting disease. Nevertheless, she continues to live an active life and shatter the stereotypes of people with disabilities. Today, she works at the International Human Trafficking Institute, an initiative of the National Center for Civil and Human Rights in Atlanta.
Cara E. Yar Khan | Speaker | TED.com