All lives matter | Karen Gaffney | TEDxPortland

May 30, 2015 - TEDxPortland. Karen Gaffney left Rose City and the world in awe with a captivating talk that explored the history, current state and progress of Down syndrome. Her idea? All lives matter. Further, we must refine our vocabulary and eradicate “the R-word” as the word “retard” has no place in our daily language.

Karen is the President of a non-profit organization dedicated to championing the journey to full inclusion in families, schools, the workplace, and the community for people with developmental disabilities. She graduated from St. Mary’s Academy in Portland, Oregon, and earned a two-year Associate of Science degree from Portland Community College. Karen has also been awarded an honorary Doctor of Humane Letters degree from the University of Portland on May 5th, 2013, for her work in raising awareness regarding the abilities of people who have Down syndrome. She is a fearless open-water swimmer having successfully swam the English Channel, escaped Alcatraz (16 times) and conquered Lake Tahoe in 59-degree water. Karen swims to raise funds and awareness of what people with Down syndrome can do. http://www.karengaffneyfoundation.com/

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx

Good morning.

You know, I survived Alcatraz,
so this should be a piece of cake, right?

(Laughter)

(Applause)

I wonder what comes to mind
when you think of our tomorrows,

the tomorrows of people
with Down syndrome.

Some of you may be thinking,
"Is there a tomorrow for people like us?"

Given what is happening
in a world of prenatal testing,

anyone would question that.

Well, I'm here today not only
to make a case for Down syndrome,

but to spread the idea
that all lives matter.

(Applause)

I would like to start by telling you
a story about my fifth grade teacher.

It was her first year of teaching
when I showed up in her class.

She didn't know anything about
Down syndrome, but that didn't matter,

because she knew I wanted to learn,
and she wanted to teach.

We stayed in touch all these years

even after she got married
and moved to Germany.

She always made time for me
when she came back to the States.

A few years ago,
I got a special letter from her.

She told me she was pregnant,
and she needed my help.

She needed my help because her baby
would be born with Down syndrome.

The diagnosis came
very early in her pregnancy.

She pushed back
on any discussion of termination,

because she knew Down syndrome
from a completely different perspective

than her doctor did.

She taught him about one of her
fifth grade students.

Me.

So, what is Down syndrome, anyway?

Well, let me take you back
to your high school Biology classes

where you learned about chromosomes.

(Soft laughter)

You have 23 pairs of chromosomes
in every cell in your body.

Forty six total.

Well, I have one more than you do.

(Laughter)

(Applause)

I have 47, and so does
everyone else like me.

It is not a disease.
You can't catch it from anyone.

It is just something that happens.

And as of today, we really
don't know why it happens.

We learned about this extra chromosome
only about 50 years ago.

A research team, led by
Dr. Jérôme Lejeune, made the discovery

that all of us with Down syndrome
"rock" an extra chromosome.

(Laughter)

Dr. Lejeune devoted his life
to finding ways

to improve the lives of those of us
who were born with the extra chromosome.

It was never his intention
to have his discoveries lead to the test

that would prevent our lives.

It was right around this time,
half way through the 20th century,

that the practice of institutionalizing
people like me, shortly after birth,

was finally coming to an end,

because families started
pushing back on the practice.

It still took a while for some healthcare
professionals to catch on to that though.

I've heard my dad talk about the doctor

discussing this option
with him when I was born.

The doctor predicted
that I would be lucky to be able

to tie my own shoes, or write my own name.

Well, he forgot to mention the part
about the English Channel, though.

(Applause)

(Cheers)

After saying "No" to institutions,

families were searching for ways
to make life better for their children

born with intellectual disabilities.

Getting into their neighborhood schools
wasn't an option at that time.

So they fixed that.

In the early 60s and 70s,
we had parents, ordinary parents,

and other friends
and supporters they could enlist,

knocking down doors,
pulling out all stops,

standing up for our rights
and getting legislation passed

that allowed people like me
into the classrooms of the 80s and 90s.

For many of those parents,
the parents a generation ahead of mine,

it was too late for their own children,
but they made it happen for my generation.

They opened the doors.

(Applause)

They opened the doors
and we walked right in.

I guess you can say
they created our tomorrows,

and we owe them a great deal of thanks.

So that brings us to today - the present.

As we turn the corner
into the 21st century,

we have begun to see more and more
young people with Down syndrome,

all over the country,
graduating from their high schools,

some going on to higher education,
learning employable job skills.

Now, just so you know,
it's far from perfect.

Breakthroughs haven't come for everyone.

We still have battles
to fight for inclusion

in too many classrooms around the country.

Unemployment is still
a huge hurdle for us.

But, those grassroots
family-driven organizations

are hard at work collaborating, lobbying,

and driving for improvement.

It is easy to see the progress
we have made, ladies and gentlemen.

You can pick any city
or state in the U.S.,

search in the various
Down syndrome support groups there

and read about some
of the accomplishments I'm talking about.

You'll read about accomplished
musicians and artists.

You'll read about
black belts in taekwondo,

golfers, dancers, models,

actors, and public speakers,
as well as good employees,

making significant contributions
to their companies and communities.

All role models for what can be done
in spite of one extra chromosome.

All doing our part to rewrite
the story on Down syndrome.

So, what is the issue?

Well, as we turned the corner
on the 21st century,

something else was happening too.

While we were all busy
writing new chapters on Down syndrome,

it seems the whole industry has grown up,

and the race is on
to find newer, faster ways

to test for Down syndrome before birth.

The problem is, without timely
and accurate information

about all our progress,

if a test shows an extra chromosome,
pregnancies are being terminated.

Except for those,
like my fifth grade teacher who say,

"I know a different Down syndrome,"

or, "Wait a minute,
let me learn more about this."

We still have experts
in the medical community

advising families with old
and outdated data,

data that reflects the past,
and ignores the present.

Imagine that, ladies and gentlemen,

here we are reversing
the damage of life in institutions,

removing barriers to education,

making inroads into a full
and inclusive life for people like me.

And we have those who say
we shouldn't even be born at all.

You know, my fifth grade teacher
named her baby Mia Rose.

Mia is eight years old now.

She's going to her neighborhood school.

She's speaking both English and German,

but more importantly, Mia is a swimmer.

(Laughter)

(Applause)

Our world is better with Mia in it.

I believe Down syndrome
is a life worth saying yes to.

It is a life worth saving.

And thankfully, the same
grassroots family movement

that pulled us out of institutions

and gave us the ability to live, learn
and grow along with everyone else,

is leading the charge to do just that:

save our lives.

The Global Down Syndrome Foundation
was started about 10 years ago,

by a grandfather who didn't know
anything at all about Down syndrome

until his grandchild was born.

He studied our past,
he learned about our present,

and he was troubled by what he saw.

He gathered people around him
to focus on our future.

Their answer to the prenatal
testing industry is

the Linda Crnic Institute
for Down Syndrome,

the first of its kind in the U.S.

committed solely
to research and medical care

with the stated goal to eradicate

the medical and cognitive ill effects

caused by that extra chromosome.

And then, there is the LuMind Foundation,

yet another grassroots,
parent-driven organization

that is funding very targeted
medical research.

Their focus is on our learning problems,

our speech problems, our memory problems,

as well as the huge threat
many of us face,

and that is the early onset
of Alzheimer's disease.

These organizations
are changing the playing field

for those of us with Down syndrome,

and they hold the keys to our future.

Just like the families of the 60s and 70s
who said "No" to the institutions,

and "Yes" to education and inclusion.

These organizations know
what's possible for us in the future,

because of the incredible progress
we are making now.

You know, Margaret Mead once said,
"Never doubt that a small group

of thoughtful, committed citizens
can change the world.

Indeed, it is the only thing
that ever has."

Well, you only have to look back
about 50 years to see the proof of that

for those of us with Down syndrome.

Look how they changed our world
and are still changing it.

Can't you just imagine a future
for people like me,

who are just starting out now?

I know I can.

Now, before I close I have one request
to make of all of you here,

and anyone watching this.

Please, turn your back on the R-word.

Please eliminate it from your vocabulary.

Yes, the R-word.
It is long overdue for extinction.

You may think we don't
understand that word,

or you may think we can't
hear it when it is said.

But believe me when I tell you,
we do understand,

we can hear it, and it hurts.

It has no place in our world,
so help me on this one, please.

Finally, I will leave you
with this one idea.

Every life has value.

Every life matters, regardless
of the number of chromosomes we have.

Thank you.

(Applause)