1
00:00:10,480 --> 00:00:12,389
Good morning.

2
00:00:13,739 --> 00:00:18,822
You know, I survived Alcatraz,
so this should be a piece of cake, right?

3
00:00:18,822 --> 00:00:20,352
(Laughter)

4
00:00:20,352 --> 00:00:22,612
(Applause)

5
00:00:24,012 --> 00:00:28,922
I wonder what comes to mind
when you think of our tomorrows,

6
00:00:28,922 --> 00:00:32,622
the tomorrows of people
with Down syndrome.

7
00:00:32,622 --> 00:00:38,158
Some of you may be thinking,
"Is there a tomorrow for people like us?"

8
00:00:38,158 --> 00:00:42,768
Given what is happening
in a world of prenatal testing,

9
00:00:42,768 --> 00:00:45,748
anyone would question that.

10
00:00:46,548 --> 00:00:52,680
Well, I'm here today not only
to make a case for Down syndrome,

11
00:00:52,689 --> 00:00:57,182
but to spread the idea
that all lives matter.

12
00:00:57,752 --> 00:00:59,692
(Applause)

13
00:01:06,866 --> 00:01:12,154
I would like to start by telling you
a story about my fifth grade teacher.

14
00:01:12,154 --> 00:01:16,782
It was her first year of teaching
when I showed up in her class.

15
00:01:17,305 --> 00:01:22,456
She didn't know anything about 
Down syndrome, but that didn't matter,

16
00:01:22,456 --> 00:01:27,699
because she knew I wanted to learn,
and she wanted to teach.

17
00:01:28,197 --> 00:01:30,785
We stayed in touch all these years

18
00:01:30,785 --> 00:01:34,745
even after she got married
and moved to Germany.

19
00:01:34,755 --> 00:01:39,470
She always made time for me
when she came back to the States.

20
00:01:40,103 --> 00:01:44,251
A few years ago,
I got a special letter from her.

21
00:01:44,777 --> 00:01:49,339
She told me she was pregnant,
and she needed my help.

22
00:01:49,905 --> 00:01:55,950
She needed my help because her baby
would be born with Down syndrome.

23
00:01:56,796 --> 00:02:00,658
The diagnosis came
very early in her pregnancy.

24
00:02:00,658 --> 00:02:04,518
She pushed back 
on any discussion of termination,

25
00:02:04,959 --> 00:02:09,351
because she knew Down syndrome
from a completely different perspective

26
00:02:09,351 --> 00:02:11,721
than her doctor did.

27
00:02:12,021 --> 00:02:16,052
She taught him about one of her
fifth grade students.

28
00:02:16,492 --> 00:02:18,222
Me.

29
00:02:20,205 --> 00:02:23,399
So, what is Down syndrome, anyway?

30
00:02:24,070 --> 00:02:27,782
Well, let me take you back
to your high school Biology classes

31
00:02:27,782 --> 00:02:30,032
where you learned about chromosomes.

32
00:02:30,032 --> 00:02:32,262
(Soft laughter)

33
00:02:32,262 --> 00:02:37,541
You have 23 pairs of chromosomes
in every cell in your body.

34
00:02:37,541 --> 00:02:39,886
Forty six total.

35
00:02:40,556 --> 00:02:44,036
Well, I have one more than you do.

36
00:02:44,036 --> 00:02:45,924
(Laughter)

37
00:02:45,924 --> 00:02:47,754
(Applause)

38
00:02:52,091 --> 00:02:57,512
I have 47, and so does
everyone else like me.

39
00:02:57,512 --> 00:03:02,169
It is not a disease.
You can't catch it from anyone.

40
00:03:02,169 --> 00:03:04,413
It is just something that happens.

41
00:03:04,413 --> 00:03:09,233
And as of today, we really
don't know why it happens.

42
00:03:10,383 --> 00:03:15,867
We learned about this extra chromosome
only about 50 years ago.

43
00:03:16,437 --> 00:03:22,181
A research team, led by
Dr. Jérôme Lejeune, made the discovery

44
00:03:22,181 --> 00:03:27,011
that all of us with Down syndrome
"rock" an extra chromosome.

45
00:03:27,011 --> 00:03:29,117
(Laughter)

46
00:03:30,147 --> 00:03:33,403
Dr. Lejeune devoted his life
to finding ways

47
00:03:33,403 --> 00:03:39,733
to improve the lives of those of us
who were born with the extra chromosome.

48
00:03:39,733 --> 00:03:44,877
It was never his intention
to have his discoveries lead to the test

49
00:03:44,877 --> 00:03:47,497
that would prevent our lives.

50
00:03:48,107 --> 00:03:52,598
It was right around this time,
half way through the 20th century,

51
00:03:52,598 --> 00:03:58,348
that the practice of institutionalizing
people like me, shortly after birth,

52
00:03:58,348 --> 00:04:01,606
was finally coming to an end,

53
00:04:01,606 --> 00:04:05,620
because families started
pushing back on the practice.

54
00:04:06,153 --> 00:04:12,082
It still took a while for some healthcare
professionals to catch on to that though.

55
00:04:12,082 --> 00:04:15,010
I've heard my dad talk about the doctor

56
00:04:15,010 --> 00:04:19,060
discussing this option
with him when I was born.

57
00:04:19,730 --> 00:04:23,780
The doctor predicted
that I would be lucky to be able

58
00:04:23,780 --> 00:04:29,579
to tie my own shoes, or write my own name.

59
00:04:30,686 --> 00:04:35,105
Well, he forgot to mention the part
about the English Channel, though.

60
00:04:35,105 --> 00:04:36,549
(Applause)

61
00:04:36,549 --> 00:04:39,116
(Cheers)

62
00:04:45,359 --> 00:04:48,145
After saying "No" to institutions,

63
00:04:48,145 --> 00:04:51,769
families were searching for ways
to make life better for their children

64
00:04:51,769 --> 00:04:54,999
born with intellectual disabilities.

65
00:04:55,919 --> 00:05:00,653
Getting into their neighborhood schools
wasn't an option at that time.

66
00:05:00,653 --> 00:05:03,504
So they fixed that.

67
00:05:04,084 --> 00:05:09,655
In the early 60s and 70s,
we had parents, ordinary parents,

68
00:05:09,655 --> 00:05:13,387
and other friends
and supporters they could enlist,

69
00:05:13,387 --> 00:05:17,740
knocking down doors,
pulling out all stops,

70
00:05:17,740 --> 00:05:21,595
standing up for our rights
and getting legislation passed

71
00:05:21,595 --> 00:05:28,162
that allowed people like me
into the classrooms of the 80s and 90s.

72
00:05:28,182 --> 00:05:33,635
For many of those parents,
the parents a generation ahead of mine,

73
00:05:33,635 --> 00:05:40,332
it was too late for their own children,
but they made it happen for my generation.

74
00:05:41,122 --> 00:05:43,025
They opened the doors.

75
00:05:43,025 --> 00:05:45,835
(Applause)

76
00:05:50,835 --> 00:05:56,206
They opened the doors
and we walked right in.

77
00:05:56,376 --> 00:06:00,640
I guess you can say
they created our tomorrows,

78
00:06:00,640 --> 00:06:03,978
and we owe them a great deal of thanks.

79
00:06:04,538 --> 00:06:09,717
So that brings us to today - the present.

80
00:06:09,717 --> 00:06:13,266
As we turn the corner
into the 21st century,

81
00:06:13,275 --> 00:06:18,228
we have begun to see more and more
young people with Down syndrome,

82
00:06:18,228 --> 00:06:22,835
all over the country,
graduating from their high schools,

83
00:06:22,835 --> 00:06:29,020
some going on to higher education,
learning employable job skills.

84
00:06:30,036 --> 00:06:34,133
Now, just so you know,
it's far from perfect.

85
00:06:34,613 --> 00:06:37,906
Breakthroughs haven't come for everyone.

86
00:06:37,906 --> 00:06:41,153
We still have battles
to fight for inclusion

87
00:06:41,153 --> 00:06:45,009
in too many classrooms around the country.

88
00:06:45,009 --> 00:06:49,368
Unemployment is still
a huge hurdle for us.

89
00:06:49,938 --> 00:06:54,215
But, those grassroots
family-driven organizations

90
00:06:54,215 --> 00:06:58,870
are hard at work collaborating, lobbying,

91
00:06:58,870 --> 00:07:01,610
and driving for improvement.

92
00:07:02,520 --> 00:07:07,013
It is easy to see the progress
we have made, ladies and gentlemen.

93
00:07:07,013 --> 00:07:10,921
You can pick any city
or state in the U.S.,

94
00:07:10,921 --> 00:07:14,950
search in the various
Down syndrome support groups there

95
00:07:14,950 --> 00:07:19,450
and read about some
of the accomplishments I'm talking about.

96
00:07:19,463 --> 00:07:24,081
You'll read about accomplished
musicians and artists.

97
00:07:24,081 --> 00:07:27,556
You'll read about
black belts in taekwondo,

98
00:07:27,556 --> 00:07:32,510
golfers, dancers, models,

99
00:07:32,510 --> 00:07:37,340
actors, and public speakers,
as well as good employees,

100
00:07:37,340 --> 00:07:42,962
making significant contributions
to their companies and communities.

101
00:07:43,622 --> 00:07:49,783
All role models for what can be done
in spite of one extra chromosome.

102
00:07:49,783 --> 00:07:55,470
All doing our part to rewrite
the story on Down syndrome.

103
00:07:57,071 --> 00:07:59,671
So, what is the issue?

104
00:08:00,591 --> 00:08:04,581
Well, as we turned the corner
on the 21st century,

105
00:08:04,581 --> 00:08:07,661
something else was happening too.

106
00:08:08,481 --> 00:08:13,609
While we were all busy
writing new chapters on Down syndrome,

107
00:08:13,609 --> 00:08:17,402
it seems the whole industry has grown up,

108
00:08:17,402 --> 00:08:21,735
and the race is on
to find newer, faster ways

109
00:08:21,735 --> 00:08:25,705
to test for Down syndrome before birth.

110
00:08:25,705 --> 00:08:30,446
The problem is, without timely
and accurate information

111
00:08:30,446 --> 00:08:32,466
about all our progress,

112
00:08:32,466 --> 00:08:38,780
if a test shows an extra chromosome,
pregnancies are being terminated.

113
00:08:39,646 --> 00:08:43,953
Except for those, 
like my fifth grade teacher who say,

114
00:08:43,953 --> 00:08:47,073
"I know a different Down syndrome,"

115
00:08:47,073 --> 00:08:51,828
or, "Wait a minute,
let me learn more about this."

116
00:08:52,268 --> 00:08:55,777
We still have experts
in the medical community

117
00:08:55,777 --> 00:09:01,070
advising families with old
and outdated data,

118
00:09:01,307 --> 00:09:05,730
data that reflects the past,
and ignores the present.

119
00:09:06,199 --> 00:09:08,820
Imagine that, ladies and gentlemen,

120
00:09:08,820 --> 00:09:14,021
here we are reversing
the damage of life in institutions,

121
00:09:14,021 --> 00:09:16,881
removing barriers to education,

122
00:09:16,881 --> 00:09:22,535
making inroads into a full
and inclusive life for people like me.

123
00:09:23,007 --> 00:09:28,940
And we have those who say
we shouldn't even be born at all.

124
00:09:31,107 --> 00:09:36,905
You know, my fifth grade teacher
named her baby Mia Rose.

125
00:09:37,662 --> 00:09:40,288
Mia is eight years old now.

126
00:09:40,928 --> 00:09:44,258
She's going to her neighborhood school.

127
00:09:44,258 --> 00:09:47,727
She's speaking both English and German,

128
00:09:47,727 --> 00:09:50,991
but more importantly, Mia is a swimmer.

129
00:09:50,991 --> 00:09:52,613
(Laughter)

130
00:09:52,613 --> 00:09:54,883
(Applause)

131
00:10:00,563 --> 00:10:04,593
Our world is better with Mia in it.

132
00:10:05,403 --> 00:10:10,560
I believe Down syndrome
is a life worth saying yes to.

133
00:10:10,560 --> 00:10:13,170
It is a life worth saving.

134
00:10:14,000 --> 00:10:20,652
And thankfully, the same
grassroots family movement

135
00:10:20,652 --> 00:10:22,946
that pulled us out of institutions

136
00:10:22,946 --> 00:10:29,316
and gave us the ability to live, learn
and grow along with everyone else,

137
00:10:29,316 --> 00:10:33,676
is leading the charge to do just that:

138
00:10:33,676 --> 00:10:36,126
save our lives.

139
00:10:37,946 --> 00:10:42,556
The Global Down Syndrome Foundation
was started about 10 years ago,

140
00:10:42,556 --> 00:10:47,636
by a grandfather who didn't know
anything at all about Down syndrome

141
00:10:47,636 --> 00:10:50,248
until his grandchild was born.

142
00:10:50,248 --> 00:10:54,731
He studied our past,
he learned about our present,

143
00:10:54,731 --> 00:10:57,841
and he was troubled by what he saw.

144
00:10:57,841 --> 00:11:02,950
He gathered people around him
to focus on our future.

145
00:11:03,631 --> 00:11:08,619
Their answer to the prenatal
testing industry is

146
00:11:08,619 --> 00:11:12,499
the Linda Crnic Institute
for Down Syndrome,

147
00:11:12,499 --> 00:11:14,935
the first of its kind in the U.S.

148
00:11:14,935 --> 00:11:18,545
committed solely
to research and medical care

149
00:11:18,545 --> 00:11:22,553
with the stated goal to eradicate

150
00:11:22,553 --> 00:11:25,993
the medical and cognitive ill affects

151
00:11:25,993 --> 00:11:29,353
caused by that extra chromosome.

152
00:11:30,043 --> 00:11:32,966
And then, there is the LuMind Foundation,

153
00:11:32,966 --> 00:11:37,335
yet another grassroots,
parent-driven organization

154
00:11:37,335 --> 00:11:41,715
that is funding very targeted
medical research.

155
00:11:41,715 --> 00:11:44,674
Their focus is on our learning problems,

156
00:11:44,674 --> 00:11:49,374
our speech problems, our memory problems,

157
00:11:49,374 --> 00:11:53,483
as well as the huge threat
many of us face,

158
00:11:53,483 --> 00:11:57,333
and that is the early onset
of Alzheimer's disease.

159
00:11:58,513 --> 00:12:01,986
These organizations
are changing the playing field

160
00:12:01,986 --> 00:12:05,224
for those of us with Down syndrome,

161
00:12:05,224 --> 00:12:09,094
and they hold the keys to our future.

162
00:12:09,094 --> 00:12:15,083
Just like the families of the 60s and 70s
who said "No" to the institutions,

163
00:12:15,083 --> 00:12:19,023
and "Yes" to education and inclusion.

164
00:12:19,713 --> 00:12:24,348
These organizations know
what's possible for us in the future,

165
00:12:24,348 --> 00:12:28,551
because of the incredible progress
we are making now.

166
00:12:30,337 --> 00:12:36,459
You know, Margaret Mead once said,
"Never doubt that a small group

167
00:12:36,459 --> 00:12:40,699
of thoughtful, committed citizens
can change the world.

168
00:12:40,699 --> 00:12:45,339
Indeed, it is the only thing
that ever has."

169
00:12:45,959 --> 00:12:52,021
Well, you only have to look back
about 50 years to see the proof of that

170
00:12:52,021 --> 00:12:55,517
for those of us with Down syndrome.

171
00:12:55,517 --> 00:13:00,239
Look how they changed our world
and are still changing it.

172
00:13:00,239 --> 00:13:04,407
Can't you just imagine a future
for people like me,

173
00:13:04,407 --> 00:13:07,557
who are just starting out now?

174
00:13:08,457 --> 00:13:10,693
I know I can.

175
00:13:11,873 --> 00:13:17,380
Now, before I close I have one request
to make of all of you here,

176
00:13:17,380 --> 00:13:19,879
and anyone watching this.

177
00:13:20,439 --> 00:13:24,033
Please, turn your back on the R-word.

178
00:13:24,033 --> 00:13:27,183
Please eliminate it from your vocabulary.

179
00:13:27,963 --> 00:13:32,877
Yes, the R-word. 
It is long overdue for extinction.

180
00:13:33,715 --> 00:13:36,936
You may think we don't
understand that word,

181
00:13:36,936 --> 00:13:40,705
or you may think we can't
hear it when it is said.

182
00:13:40,705 --> 00:13:44,557
But believe me when I tell you,
we do understand,

183
00:13:44,557 --> 00:13:48,177
we can hear it, and it hurts.

184
00:13:48,177 --> 00:13:54,048
It has no place in our world,
so help me on this one, please.

185
00:13:55,149 --> 00:13:59,010
Finally, I will leave you
with this one idea.

186
00:14:00,230 --> 00:14:02,800
Every life has value.

187
00:14:02,800 --> 00:14:08,838
Every life matters, regardless
of the number of chromosomes we have.

188
00:14:08,838 --> 00:14:10,498
Thank you

189
00:14:10,498 --> 00:14:12,458
(Applause)