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 affects
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)