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prenatal testing industry is critiqued for potentially leading to the prevention of lives with Down syndrome based on outdated information.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.