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Good morning.

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You know, I survived Alcatraz,[br]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[br]when you think of our tomorrows,

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the tomorrows of people[br]with Down syndrome.

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

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Given what is happening[br]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[br]to make a case for Down syndrome,

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but to spread the idea[br]that all lives matter.

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(Applause)

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

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

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

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because she knew I wanted to learn,[br]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[br]and moved to Germany.

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

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

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

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

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The diagnosis came[br]very early in her pregnancy.

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She pushed back [br]on any discussion of termination,

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because she knew Down syndrome[br]from a completely different perspective

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than her doctor did.

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She taught him about one of her[br]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[br]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[br]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[br]everyone else like me.

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It is not a disease.[br]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[br]don't know why it happens.

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We learned about this extra chromosome[br]only about 50 years ago.

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

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

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(Laughter)

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Dr. Lejeune devoted his life[br]to finding ways

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

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It was never his intention[br]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,[br]half way through the 20th century,

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

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was finally coming to an end,

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because families started[br]pushing back on the practice.

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It still took a while for some healthcare[br]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[br]with him when I was born.

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The doctor predicted[br]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[br]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[br]to make life better for their children

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born with intellectual disabilities.

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Getting into their neighborhood schools[br]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,[br]we had parents, ordinary parents,

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and other friends[br]and supporters they could enlist,

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knocking down doors,[br]pulling out all stops,

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standing up for our rights[br]and getting legislation passed

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

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For many of those parents,[br]the parents a generation ahead of mine,

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it was too late for their own children,[br]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[br]and we walked right in.

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I guess you can say[br]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[br]into the 21st century,

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

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all over the country,[br]graduating from their high schools,

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

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

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Breakthroughs haven't come for everyone.

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We still have battles[br]to fight for inclusion

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in too many classrooms around the country.

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Unemployment is still[br]a huge hurdle for us.

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But, those grassroots[br]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[br]we have made, ladies and gentlemen.

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

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search in the various[br]Down syndrome support groups there

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

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You'll read about accomplished[br]musicians and artists.

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You'll read about[br]black belts in taekwondo,

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golfers, dancers, models,

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actors, and public speakers,[br]as well as good employees,

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making significant contributions[br]to their companies and communities.

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

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

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So, what is the issue?

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Well, as we turned the corner[br]on the 21st century,

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something else was happening too.

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While we were all busy[br]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[br]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[br]and accurate information

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about all our progress,

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

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Except for those, [br]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,[br]let me learn more about this."

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We still have experts[br]in the medical community

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advising families with old[br]and outdated data,

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data that reflects the past,[br]and ignores the present.

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Imagine that, ladies and gentlemen,

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here we are reversing[br]the damage of life in institutions,

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removing barriers to education,

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

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

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You know, my fifth grade teacher[br]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[br]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[br]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[br]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[br]was started about 10 years ago,

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

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until his grandchild was born.

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He studied our past,[br]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[br]to focus on our future.

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Their answer to the prenatal[br]testing industry is

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the Linda Crnic Institute[br]for Down Syndrome,

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the first of its kind in the U.S.

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committed solely[br]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,[br]parent-driven organization

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that is funding very targeted[br]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[br]many of us face,

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

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These organizations[br]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[br]who said "No" to the institutions,

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and "Yes" to education and inclusion.

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

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because of the incredible progress[br]we are making now.

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

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of thoughtful, committed citizens[br]can change the world.

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

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Well, you only have to look back[br]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[br]and are still changing it.

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Can't you just imagine a future[br]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[br]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. [br]It is long overdue for extinction.

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You may think we don't[br]understand that word,

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

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But believe me when I tell you,[br]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,[br]so help me on this one, please.

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Finally, I will leave you[br]with this one idea.

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Every life has value.

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

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Thank you.

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(Applause)