WEBVTT

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Imagine being unable to say,
"I am hungry", "I am in pain"

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"Thank you", or "I love you."

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Being trapped inside your body,

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a body that doesn't respond to commands.

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Surrounded by people,

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yet utterly alone.

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Wishing you could reach out,

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to connect, to comfort, to participate.

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For 13 long years, that was my reality.

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Most of us never think twice
about talking, about communicating.

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I thought a lot about it,

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I've had a lot of time to think.

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For the first 12 years of my life,

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I was a normal, happy, healthy little boy.

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Then everything changed.

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I contracted a brain infection.

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The doctors weren't sure what it was,

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but they treated me the best they could.

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However, I progressively got worse.

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Eventually, I lost my ability
to control my movements,

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make eye contact,

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and finally, my ability to speak.

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While in hospital,

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I desperately wanted to go home.

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I said to my mother, "When home?"

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Those were the last words
I ever spoke with my own voice.

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I would eventually fail every test
for mental awareness.

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My parents were told
I was as good as not there.

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A vegetable, having the intelligence
of a three-month-old baby.

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They were told to take me home
and try to keep me comfortable

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until I died.

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My parents, in fact
my entire family's lives,

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became consumed by taking care of me
the best they knew how.

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Their friends drifted away.

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One year turned to two,

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two turned to three.

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It seemed like the person I once was
began to disappear.

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The Lego blocks and electronic circuits
I'd loved as a boy were put away.

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I had been moved out of my bedroom
into another more practical one.

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I had become a ghost,

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a faded memory of a boy
people once knew and loved.

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Meanwhile, my mind began
knitting itself back together.

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Gradually, my awareness started to return.

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But no one realized
that I had come back to life.

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I was aware of everything,

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just like any normal person.

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I could see and understand everything,

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but I couldn't find a way
to let anybody know.

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My personality was entombed
within a seemingly silent body,

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a vibrant mind hidden in plain sight
within a chrysalis.

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The stark reality hit me
that I was going to spend

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the rest of my life locked inside myself,

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totally alone.

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I was trapped with only
my thoughts for company.

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I would never be rescued.

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No one would ever show me tenderness.

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I would never talk to a friend.

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No one would ever love me.

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I had no dreams, no hope,
nothing to look forward to.

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Well, nothing pleasant.

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I lived in fear,

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and, to put it bluntly,

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was waiting for death
to finally release me,

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expecting to die all alone in a care home.

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I don't know if it's truly possible
to express in words

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what it's like not to be able
to communicate.

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Your personality appears
to vanish into a heavy fog

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and all of your emotions and desires are
constricted, stifled and muted within you.

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For me, the worst was the feeling
of utter powerlessness.

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I simply existed.

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It's a very dark place to find yourself

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because in a sense, you have vanished.

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Other people controlled
every aspect of my life.

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They decided what I ate and when.

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Whether I was laid on my side
or strapped into my wheelchair.

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I often spent my days
positioned in front of the TV

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watching Barney reruns.

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I think because Barney
is so happy and jolly,

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and I absolutely wasn't,

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it made it so much worse.

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I was completely powerless
to change anything in my life

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or people's perceptions of me.

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I was a silent, invisible observer
of how people behaved

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when they thought no one was watching.

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Unfortunately, I wasn't only an observer.

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With no way to communicate,
I became the perfect victim:

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A defenseless object,
seemingly devoid of feelings

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that people used
to play out their darkest desires.

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For more than 10 years,
people who were charged with my care

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abused me physically,
verbally and sexually.

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Despite what they thought, I did feel.

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The first time it happened,

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I was shocked and filled with disbelief.

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How could they do this to me?

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I was confused.

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What had I done to deserve this?

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Part of me wanted to cry
and another part wanted to fight.

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Hurt, sadness and anger
flooded through me.

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I felt worthless.

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There was no one to comfort me.

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But neither of my parents
knew this was happening.

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I lived in terror, knowing
it would happen again and again.

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I just never knew when.

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All I knew was that I would
never be the same.

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I remember once listening
to Whitney Houston singing,

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"No matter what they take from me,
they can't take away my dignity."

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And I thought to myself,
"You want to bet?"

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Perhaps my parents could have
found out and could have helped.

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But the years of constant caretaking,

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having to wake up
every two hours to turn me,

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combined with them essentially
grieving the loss of their son,

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had taken a toll on my mother and father.

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Following yet another heated argument
between my parents,

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in a moment of despair and desperation,

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my mother turned to me
and told me that I should die.

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I was shocked, but as I thought
about what she had said,

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I was filled with enormous compassion
and love for my mother,

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yet I could do nothing about it.

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There were many moments when I gave up,

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sinking into a dark abyss.

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I remember one particularly low moment.

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My dad left me alone in the car

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while he quickly went
to buy something from the store.

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A random stranger walked past,

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looked at me and he smiled.

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I may never know why, but that simple act,

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the fleeting moment of human connection,

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transformed how I was feeling,

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making me want to keep going.

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My existence was tortured by monotony,

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a reality that was often too much to bare.

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Alone with my thoughts,
I constructed intricate fantasies

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about ants running across the floor.

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I taught myself to tell the time
by noticing where the shadows were.

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As I learned how the shadows moved
as the hours of the day passed,

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I understood how long it would be
before I was picked up and taken home.

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Seeing my father walk
through the door to collect me

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was the best moment of the day.

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My mind became a tool that I could use

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to either close down
to retreat from my reality

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or enlarge into a gigantic space
that I could fill with fantasies.

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I hoped that my reality would change

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and someone would see
that I had come back to life.

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But I had been washed away
like a sand castle

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built too close to the waves,

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and in my place was the person
people expected me to be.

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To some I was Martin,
the vacant shell, the vegetable,

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deserving of harsh words,
dismissal, and even abuse.

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To others, I was the tragically
brain-damaged boy

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who had grown to become a man.

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Someone they were kind to and cared for.

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Good or bad, I was a blank canvass

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onto which different versions
of myself were projected.

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It took someone new
to see me in a different way.

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An aromatherapist began coming
to the care home about once a week.

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Whether through intuition
or her attention to details

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that others failed to notice,

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she became convinced that I could
understand what was being said.

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She urged my parents
to have me tested by experts

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in augmentative
and alternative communication.

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And within a year,

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I was beginning to use
a computer program to communicate.

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It was exhilarating,
but frustrating at times.

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I had so many words in my mind,

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that I couldn't wait
to be able to share them.

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Sometimes, I would say things to myself
simply because I could.

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In myself, I had already an audience,

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and I believed that by expressing
my thoughts and wishes,

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others would listen, too.

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But as I began to communicate more,

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I realized that it was in fact
only just the beginning

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of creating a new voice for myself.

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I was thrust into a world
I didn't quite know how to function in.

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I stopped going to the care home

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and managed to get my first job
making photocopies.

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As simple as this may sound,
it was amazing.

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My new world was really exciting,

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but often quite overwhelming
and frightening.

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I was like a man-child,

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and as liberating as it often was,

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I struggled.

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I also learned that many of those
who had known me for a long time

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found it impossible to abandon the idea
of Martin they had in their heads.

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While those I had only just met

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struggled to look past the image
of a silent man in a wheelchair.

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I realized that some people
would only listen to me

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if what I said was in line
with what they expected.

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Otherwise, it was disregarded

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and they did what they felt was best.

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I discovered that true communication

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is about more than merely
physically conveying a message.

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It is about getting the message
heard and respected.

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Still, things were going well.

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My body was slowly getting stronger.

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I had a job in computing that I loved,

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and had even got Kojak, the dog
I had been dreaming about for years.

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However, I longed to share
my life with someone.

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I remember staring out the window
as my dad drove me home from work,

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thinking I have so much love inside of me
and nobody to give it to.

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Just as I had resigned myself
to being single for the rest of my life,

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I met Joan.

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Not only is she the best thing
that has ever happened to me,

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but Joan helped me to challenge
my own misconceptions about myself.

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Joan said it was through my words
that she fell in love with me.

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However, after all I had been through,

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I still couldn't shake the belief

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that nobody could truly see
beyond my disability

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and accept me for who I am.

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I also really struggled
to comprehend that I was a man.

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The first time someone
referred to me as a man,

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it stopped me in my tracks.

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I felt like looking around
and asking, "Who, me?"

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That all changed with Joan.

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We have an amazing connection

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and I learned how important it is
to communicate openly and honestly.

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I felt safe and it gave me the confidence
to truly say what I thought.

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I started to feel whole again,
a man worthy of love.

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I began to reshape my destiny.

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I spoke up a little more at work.

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I asserted my need for independence
to the people around me.

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Being given a means of communication
changed everything.

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I used the power of words and will
to challenge the preconceptions

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of those around me
and those I had of myself.

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Communication is what makes us human,

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enabling us to connect
on the deepest level

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with those around us:

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Telling our own stories,

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expressing wants, needs and desires,

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or hearing those of others
by really listening.

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All this is how the world
knows who we are.

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So who are we without it?

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True communication increases understanding

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and creates a more caring
and compassionate world.

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Once, I was perceived
to be an inanimate object,

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a mindless phantom
of a boy in a wheelchair.

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Today, I am so much more.

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A husband, a son, a friend,

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a brother, a business owner,
a first-class honors graduate,

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a keen amateur photographer.

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It is my ability to communicate
that has given me all this.

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We are told that actions
speak louder than words.

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But I wonder,

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do they?

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Our words, however we communicate them,

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are just as powerful.

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Whether we speak the words
with our own voices,

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type them with our eyes,

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or communicate them non-verbally
to someone who speaks them for us,

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words are among our most powerful tools.

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I have come to you through
a terrible darkness,

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pulled from it by caring souls

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and by language itself.

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The act of you listening to me today
brings me farther into the light.

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We are shining here together.

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If there is one most difficult obstacle
to my way of communicating,

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it is that sometimes I want to shout

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and other times, to simply whisper
a word of love or gratitude.

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It all sounds the same.

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But if you will,

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please imagine these next two words
as warmly as you can:

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Thank you.

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(Applause)