WEBVTT

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Good morning.

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

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(Laughter)

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(Applause)

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

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the tomorrows of people
with Down syndrome.

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

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Given what is happening
in a world of prenatal testing,

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anyone would question that.

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

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but to spread the idea
that all lives matter.

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(Applause)

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

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

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

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

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We stayed in touch all these years

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even after she got married
and moved to Germany.

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

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

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

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

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The diagnosis came
very early in her pregnancy.

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She pushed back 
on any discussion of termination,

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because she knew Down syndrome
from a completely different perspective

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than her doctor did.

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She taught him about one of her
fifth grade students.

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Me.

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So, what is Down syndrome, anyway?

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

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where you learned about chromosomes.

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(Soft laughter)

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

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Forty six total.

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Well, I have one more than you do.

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(Laughter)

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(Applause)

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

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

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It is just something that happens.

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

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

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

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

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(Laughter)

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Dr. Lejeune devoted his life
to finding ways

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

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

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that would prevent our lives.

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

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

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was finally coming to an end,

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because families started
pushing back on the practice.

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

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I've heard my dad talk about the doctor

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discussing this option
with him when I was born.

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The doctor predicted
that I would be lucky to be able

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

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

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(Applause)

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(Cheers)

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After saying "No" to institutions,

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

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born with intellectual disabilities.

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

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So they fixed that.

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

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and other friends
and supporters they could enlist,

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knocking down doors,
pulling out all stops,

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standing up for our rights
and getting legislation passed

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

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

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

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They opened the doors.

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(Applause)

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They opened the doors
and we walked right in.

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I guess you can say
they created our tomorrows,

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and we owe them a great deal of thanks.

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So that brings us to today - the present.

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As we turn the corner
into the 21st century,

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

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all over the country,
graduating from their high schools,

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

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

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Breakthroughs haven't come for everyone.

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We still have battles
to fight for inclusion

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in too many classrooms around the country.

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Unemployment is still
a huge hurdle for us.

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But, those grassroots
family-driven organizations

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are hard at work collaborating, lobbying,

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and driving for improvement.

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

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

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search in the various
Down syndrome support groups there

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

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You'll read about accomplished
musicians and artists.

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You'll read about
black belts in taekwondo,

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golfers, dancers, models,

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

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making significant contributions
to their companies and communities.

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

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

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So, what is the issue?

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

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something else was happening too.

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

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it seems the whole industry has grown up,

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and the race is on
to find newer, faster ways

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to test for Down syndrome before birth.

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The problem is, without timely
and accurate information

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about all our progress,

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

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

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"I know a different Down syndrome,"

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

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We still have experts
in the medical community

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advising families with old
and outdated data,

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data that reflects the past,
and ignores the present.

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Imagine that, ladies and gentlemen,

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here we are reversing
the damage of life in institutions,

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removing barriers to education,

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

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

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

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Mia is eight years old now.

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She's going to her neighborhood school.

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She's speaking both English and German,

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but more importantly, Mia is a swimmer.

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(Laughter)

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(Applause)

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Our world is better with Mia in it.

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

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It is a life worth saving.

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And thankfully, the same
grassroots family movement

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that pulled us out of institutions

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

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is leading the charge to do just that:

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save our lives.

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

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

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until his grandchild was born.

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He studied our past,
he learned about our present,

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and he was troubled by what he saw.

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He gathered people around him
to focus on our future.

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Their answer to the prenatal
testing industry is

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the Linda Crnic Institute
for Down Syndrome,

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the first of its kind in the U.S.

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committed solely
to research and medical care

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with the stated goal to eradicate

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the medical and cognitive ill effects

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caused by that extra chromosome.

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And then, there is the LuMind Foundation,

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yet another grassroots,
parent-driven organization

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that is funding very targeted
medical research.

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Their focus is on our learning problems,

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our speech problems, our memory problems,

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as well as the huge threat
many of us face,

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

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These organizations
are changing the playing field

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for those of us with Down syndrome,

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and they hold the keys to our future.

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

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and "Yes" to education and inclusion.

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

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because of the incredible progress
we are making now.

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

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of thoughtful, committed citizens
can change the world.

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

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

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for those of us with Down syndrome.

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

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

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who are just starting out now?

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I know I can.

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

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and anyone watching this.

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Please, turn your back on the R-word.

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Please eliminate it from your vocabulary.

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

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You may think we don't
understand that word,

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

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

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we can hear it, and it hurts.

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

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Finally, I will leave you
with this one idea.

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Every life has value.

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

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Thank you.

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(Applause)