I have one more chromosome than you. So what? | Karen Gaffney | TEDxPortland

Summary

The speaker, a survivor of Alcatraz and an individual with Down syndrome, passionately advocates for the value of lives with Down syndrome amidst prenatal testing debates. She shares personal stories, including her teacher's experience with her own child diagnosed with Down syndrome, and emphasizes the progress made in education and inclusion. The speaker calls for support of organizations like the Global Down Syndrome Foundation and the LuMind Foundation, which aim to improve medical care and cognitive health for those with Down syndrome. She concludes with a plea to eliminate the derogatory 'R-word' from our vocabulary, asserting that every life holds intrinsic value.

Takeaways

• 😀 The speaker survived Alcatraz and sees the challenges of life with Down syndrome as more manageable in comparison.
• 🤔 The speaker raises the question of the future for people with Down syndrome in the context of prenatal testing and societal perceptions.
• 🌟 The speaker advocates for the value of all lives, including those with Down syndrome, emphasizing the importance of inclusion and acceptance.
• 📚 The story of the speaker's fifth-grade teacher highlights the transformative power of education and understanding, regardless of preconceived notions about Down syndrome.
• 🧬 A brief explanation of Down syndrome is provided, emphasizing it is a genetic condition involving an extra chromosome, not a disease.
• 🕵️‍♂️ The speaker acknowledges the contributions of Dr. Jérôme Lejeune in understanding Down syndrome and improving lives, rather than preventing them.
• 🏫 The historical context of institutionalization is discussed, showing progress in societal attitudes and the fight for inclusion in education.
• 🎓 The script mentions the achievements of individuals with Down syndrome in various fields, demonstrating the potential for a fulfilling life despite the condition.
• 🚀 The speaker calls attention to the ongoing challenges and the need for continued advocacy for inclusion and employment opportunities.
• 🧪 The growth of the prenatal testing industry is critiqued for potentially leading to the prevention of lives with Down syndrome based on outdated information.
• 🌐 The importance of grassroots organizations and foundations like the Global Down Syndrome Foundation and the LuMind Foundation is highlighted for their role in advancing research and improving lives.
• 💪 The speaker emphasizes the power of small, committed groups to effect change, as evidenced by the progress made by families and advocates over the past 50 years.
• 🚫 A call to action to eliminate the use of the derogatory R-word from vocabulary, acknowledging the hurt it causes and the need for respect and understanding.
• 🙏 The closing message stresses the inherent value of every life, regardless of chromosomal differences, and thanks the audience for their attention.

Q & A

What is the main message of the speaker's speech?

The speaker advocates for the value and potential of individuals with Down syndrome, emphasizing that all lives matter regardless of the number of chromosomes one has.

How does the speaker's fifth-grade teacher's story relate to the topic of Down syndrome?

The teacher's story illustrates a personal connection to Down syndrome and her decision to not terminate her pregnancy after receiving a prenatal diagnosis, showing a different perspective on Down syndrome compared to her doctor's.

What is the significance of the extra chromosome in individuals with Down syndrome?

The extra chromosome is a genetic characteristic that defines Down syndrome, but it is not a disease and cannot be caught from others. It is a natural occurrence that scientists have been studying for about 50 years.

What was Dr. Jérôme Lejeune's contribution to the understanding of Down syndrome?

Dr. Jérôme Lejeune led a research team that discovered the presence of an extra chromosome in individuals with Down syndrome and dedicated his life to improving their lives, not intending for his findings to lead to prenatal testing.

How did the societal view of people with Down syndrome change in the mid-20th century?

The practice of institutionalizing people with Down syndrome after birth was ending, and families began advocating for their inclusion in society, leading to legislative changes that allowed them into classrooms.

What progress has been made for individuals with Down syndrome in terms of education and employment?

There has been significant progress, with more young people with Down syndrome graduating from high school, some pursuing higher education, and many gaining employable skills, although challenges in inclusion and unemployment persist.

What is the issue with prenatal testing for Down syndrome according to the speaker?

The issue is that without timely and accurate information about the progress and capabilities of individuals with Down syndrome, many pregnancies are terminated upon a positive test result, based on outdated perceptions.

How does the speaker describe the impact of Mia Rose, the fifth-grade teacher's daughter with Down syndrome?

Mia Rose is described as an integral part of the world, attending her neighborhood school, speaking two languages, and being a swimmer, which exemplifies the positive contributions individuals with Down syndrome can make to society.

What are some of the organizations mentioned in the script that support individuals with Down syndrome?

The Global Down Syndrome Foundation and the Linda Crnic Institute for Down Syndrome focus on research and medical care, while the LuMind Foundation funds targeted medical research to address specific challenges faced by individuals with Down syndrome.

What is the speaker's request regarding the use of the R-word?

The speaker asks the audience to eliminate the R-word from their vocabulary, emphasizing that individuals with Down syndrome understand and are hurt by this derogatory term.

What is the final message the speaker leaves with the audience?

The speaker concludes with the idea that every life has value and matters, regardless of the number of chromosomes, advocating for the recognition and acceptance of individuals with Down syndrome.

Outlines

00:00

😀 Embracing Down Syndrome and Advocating for Inclusion

The speaker begins with a light-hearted introduction, expressing optimism about the future of individuals with Down syndrome despite societal challenges. They recount their personal story, highlighting the importance of education and the influence of a supportive fifth-grade teacher. The speaker also discusses the medical aspect of Down syndrome, explaining the chromosomal difference and the history of its discovery. They emphasize the progress made in societal acceptance and the ongoing fight for inclusion and understanding, sharing anecdotes about their own achievements and the achievements of others with Down syndrome.

05:01

📚 The Evolution of Down Syndrome Awareness and Advocacy

This paragraph delves into the history of advocacy for individuals with Down syndrome, starting from the efforts of parents in the 1960s and 1970s who fought for educational inclusion. The speaker acknowledges the significant strides made, with more individuals graduating from high school and pursuing higher education or employment. However, they also address the ongoing challenges, such as unemployment and the need for continued advocacy. The speaker calls attention to the achievements of people with Down syndrome in various fields, emphasizing their contributions to society and the importance of recognizing their potential.

10:05

🚀 Advancing the Future of Down Syndrome Through Research and Advocacy

The final paragraph focuses on the current state of research and advocacy for Down syndrome. The speaker introduces organizations like the Global Down Syndrome Foundation and the Linda Crnic Institute, which are dedicated to improving the lives of those with Down syndrome through medical research and care. They also mention the LuMind Foundation's targeted research efforts to address cognitive and developmental challenges. The speaker passionately argues against the use of derogatory language and calls for societal acceptance and respect for every life, regardless of chromosomal differences, concluding with a powerful message about the inherent value of all lives.

Keywords

💡Alcatraz

Alcatraz is a former federal prison located on an island in San Francisco Bay, known for its high-security history and inescapable reputation. In the context of the video, the speaker humorously compares surviving Alcatraz to the challenges faced by individuals with Down syndrome, suggesting that if they can overcome the former, the latter should be manageable.

💡Down Syndrome

Down Syndrome is a genetic condition caused by the presence of an extra chromosome, resulting in physical and intellectual differences. The video's theme revolves around the speaker's personal experience with Down Syndrome and the advocacy for the value and potential of life with this condition. The script frequently refers to the challenges and progress made by individuals with Down Syndrome.

💡Prenatal Testing

Prenatal Testing refers to medical procedures that analyze the fetus's genetic makeup while still in the womb, often to identify potential health issues. The video discusses the ethical and societal implications of prenatal testing for Down Syndrome, where the discovery of an extra chromosome can lead to the termination of pregnancies.

💡Chromosomes

Chromosomes are thread-like structures of DNA and proteins in the cell nucleus that carry genetic information. The script explains that typically, humans have 46 chromosomes, but individuals with Down Syndrome have 47 due to an extra copy of chromosome 21. This scientific concept is central to understanding the biological basis of Down Syndrome.

💡Inclusion

Inclusion in this context refers to the integration and acceptance of individuals with disabilities in various aspects of society, such as education and employment. The video highlights the ongoing fight for inclusion, emphasizing the importance of equal opportunities for people with Down Syndrome.

💡Institutionalizing

Institutionalizing historically refers to the practice of placing individuals with disabilities in long-term care facilities or institutions, often隔离 from society. The speaker mentions the shift away from this practice, indicating progress in societal attitudes and support for individuals with Down Syndrome.

💡Legislation

Legislation is the process of making or enacting laws. The video credits the efforts of parents and advocates in the past for pushing through legislation that allowed individuals with disabilities to be included in mainstream education, which is a significant step towards equality and social integration.

💡Unemployment

Unemployment is the state of being without a job while actively seeking work. In the script, it is mentioned as a significant challenge for individuals with Down Syndrome, highlighting the ongoing need for societal and economic adjustments to provide equal opportunities for employment.

💡Grassroots Movement

A grassroots movement is a bottom-up approach to social or political change, initiated by the people at the local level. The video discusses the importance of grassroots movements in advocating for the rights and inclusion of individuals with Down Syndrome, emphasizing the power of collective action.

💡Medical Research

Medical Research involves the study and investigation aimed at improving medical knowledge and treatment methods. The speaker mentions organizations that focus on medical research specific to Down Syndrome, aiming to improve the quality of life for those affected by addressing cognitive and health issues.

💡Alzheimer's Disease

Alzheimer's Disease is a progressive neurodegenerative disease that causes memory loss and cognitive decline. The video script points out that individuals with Down Syndrome are at a higher risk of developing Alzheimer's at an early age, and there are organizations dedicated to researching and addressing this issue.

💡The R-word

The R-word refers to a derogatory term historically used to demean individuals with intellectual disabilities. The speaker passionately calls for the elimination of this word from our vocabulary, emphasizing its hurtful impact and the importance of respectful language in fostering a more inclusive society.

💡Value of Life

The concept of the value of life in the video script is the belief that every individual's life holds inherent worth, regardless of any physical or cognitive differences. This idea is central to the speaker's message, advocating for the acceptance and celebration of all lives, including those with Down Syndrome.

Highlights

Surviving Alcatraz and facing the challenges of advocating for Down syndrome.

Questioning the future of people with Down syndrome in the context of prenatal testing.

The importance of advocating for the value and inclusion of all lives, including those with Down syndrome.

A personal story about a fifth-grade teacher who later sought help when expecting a child with Down syndrome.

Defining Down syndrome as a genetic condition with an extra chromosome, not a disease.

The historical discovery of the extra chromosome in individuals with Down syndrome by Dr. Jérôme Lejeune.

The shift away from institutionalizing people with Down syndrome, thanks to family advocacy.

The progress made in education and inclusion for individuals with Down syndrome.

The ongoing fight for inclusion and employment for people with Down syndrome.

The achievements of individuals with Down syndrome in various fields, challenging stereotypes.

The emergence of new prenatal testing technologies and their ethical implications.

The need for updated information on the capabilities and contributions of people with Down syndrome.

The story of Mia Rose, a child with Down syndrome who is thriving and contributing to her community.

The role of grassroots organizations in improving the lives of people with Down syndrome.

The mission of the Global Down Syndrome Foundation and the Linda Crnic Institute for Down Syndrome.

The LuMind Foundation's targeted medical research focusing on cognitive and health issues related to Down syndrome.

A call to action to eliminate the use of the derogatory R-word and promote respect for all individuals.

The message that every life has value, regardless of chromosomal differences.

Transcripts

Translator: Theresa Ranft

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)