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

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


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)

100 comments

  1. EVERYbody has value, has something to offer. Karen validates that; i.e. helps us look beyond the surface to the heart and mind. God bless.

  2. Amazing talk. She used the phrase 'All Lives Matter' in the context not to denigrate the BLM movement, but to highlight the an'ti-disability racism in America. Those who have developmental, intellectual, cognitive and physical disabilities are often hidden away from society in residential homes, out of classrooms and the workplaces.

  3. I am pregnant at 18 weeks and found out a week ago that our baby has Down's Syndrome. I am sending this video to all my family when telling them the news. Thank You Karen x many blessings

  4. Having seen Karen speak on a number of occasions, I wondered at the stand in front of her as I've never seen her use notes or prompts before, then her mum explained, it was there in case Karen needed to steady herself as she was recovering from surgery on her hip. Yes there is a lot beneath the surface that isn't immediately visible in this amazing young woman – she's achieved some pretty amazing things for someone with Down's Syndrome, but they are even more outstanding when you know about the surgeries she has had and the amount of grit and determination she has needed to walk after each one.

    Karen is an amazing advocate for people with different abilities, but more than that she is a kind, thoughtful, caring person and since I first met her in 2004, I have had the honour of calling her friend. Karen, please keep on inspiring individuals to reach for their dreams and showing parents that they need to ignore the limits the medics so often put on their children and instead to look for their talents and help them fulfill their potential whatever that may be. We are all different, celebrate that on March 21st World Down Syndrome Day.

  5. What a beautiful talk. Thank you so much for sharing your talents with the world. My husband and I have been fighting for over 4 years to adopt a little girl with Down syndrome from Russia. We met her in July 2012 but then Russia banned all Americans from adopting in December 2012, leaving the little girl we love to grow up in an institution for the rest of her life. The only upside to all of this is I have been in contact with a lovely organization Downside Up. They work in Eastern Europe to educate people about Down syndrome and to give the parents the resources they need to keep their children instead of giving them to institutions. Russia seems to be about 40 years behind the US. But more of their families are beginning to see that Down syndrome is not what the doctors are telling them. I still pray that one day my little girl will have a family to call her own. If anyone would be willing to sign our petition asking the two Presidents to come together for the good of the children left behind because of the ban I would be so grateful. Because #alllivesmatter. Even those in other countries. http://chn.ge/1oRGU03

  6. Very inspiring video Karen. Thank you so much for sharing. Adults, like yourself, blessed with Ds are paving the roads for our babies that are also blessed with Ds. Thank you! <3

  7. We have a beautiful, vibrant 2 year old granddaughter who was diagnosed with Down Syndrome. Brighton Noelle is our bright light and a tremendous joy in our lives. Our family has been forever changed. Thank you Karen and you are certainly correct: All lives matter. Blessings

  8. I'm 52 weeks pregnant with a tardbabby and will be aborting with a coathanger and kenmore magna suck 2000 vacuum.

  9. Like, along with that dreaded "R" word, beware of that even more dreaded (and horrible) "M" word.  Keep up your good work.  You go, girl!

  10. Dr. Karen Gaffney is the first person with Down Syndrome to receive an Honorary Doctorate. Her speech is amazing. We can do anything if we work, work, work for it. I got a lump in my throat..

  11. The part where she talks about chromosomes took me back to a high school biology lesson where one boy said that surely people with Down's syndrome ought to be superhuman "because they have more" than the rest of us.

  12. May the Lord continue to bless you and use you to inspire all of us. I look after a community for people with Intellectual Disabilities and I can say with great confidence every life matters … they bring colour into our grey lives each day … 🙂

  13. Yes it is the right for a woman to choose but not when they told extremely negative and outsmarted information. That is not giving g a full picture is it lives matter!

  14. Why is she putting down institutions? There are people on the streets because they can't cope with surviving due to mental health problems, and they become involved in drugs, prostitution and crime. People with Down syndrome are vulnerable and need extra help.

  15. The "pro-choice" argument is on very flimsy ground indeed. I think our society is slowing starting to feel the weight of tens of millions of innocent, lost lives. We're starting to realise the self deception of claiming to care about people with disabilities whilst at the same time deliberately targeting them for early termination before even exiting the womb.We're starting to realise that "pro choice" actually means "no choice" for many others just like Karen Gaffney.

  16. Really unfortunate that she uses the reactionary #AllLivesMatter term which co-opts and undermines a specific movement #BlackLivesMatter that addresses a specific issue in the USA. Of course there are many other groups which suffer discrimination in the country, but drowning out and challenging the call by one group for the cause of others doesn't seem helpful or unifying.

  17. Am i a bad Person because i would Abort a child with down syndrome or other "disabilities"?
    I completly adore her presentation, and how she's able to speak out for herself and all other people with down syndrome. She is astonishing and an enrichment for the world. 
    But i wouldnt want my child having to suffer early hearth diseases and being kept in an institution or something else..

  18. ALL LIFE MATER WTF THE R WORD IS THAT LIKE N WORD WHY THE NEED TO BRING BLACK LIFE MATER IN TO THIS I DON'T UNDERSTAND THERE ARE BLACK PPL HAVE CHILDREN WITH DOWN SYNDROME SO I DON'T LIKE IT

  19. down syndrome is a blessing in my eyes … people who have down syndrome that I have met have changed my life and showed me love … pure and beautiful people

  20. Beautiful speech and I learned a lot in that short 14 minutes about their struggles. I wish she didn't use the phrase All Lives Matter as the title. That phrase has been used to silence the Black Lives Matter movement. I don't believe she knew that nor do I believe it was intentional but it's dangerous. It forces people to choose between the two issues when both are very important and imperative to Americans progression. Black Lives Matter and Down Syndrome Lives Matter!!

  21. Wooooooo-Hoooooooooooooooooo! All true! My son is PERFECT! Facebook & Twitter: Eye On Isaac

  22. Thx Karen. You are a wonderful spokesperson for people who have Down's syndrome as well as all the unborn who have a right to life.

  23. My name is Julia Hales I am 37 years old and i have Down syndrome I just watched your video about Down syndrome. I feel very exited about your talk. I have been doing lots of presentations about Down syndrome at the Butterfly Ball of the Down syndrome Association Perth WA Australia. I would like to gave a talk like you did for Perth WA. You are an inspiration. I would like to be more of a role model to all people with Down syndrome around the wold. Thank you for what you did

  24. what a wonderful testimony to how with encouragement and opportunity our fellow citizens and friends with Down's Syndrome can reach their full potential and live full, happy and productive lives…thank you sweet young woman for sharing your accomplishments and speaking out for others…God continue to bless you as you foster further compassion and understanding of all the positives in the lives of others with this condition…

  25. I really liked her charisma and feel sorry for the struggles that she has gone through, but I don't think that it is a bad thing that down syndrome pregnancies are being terminated.

    It is hard to deny that down syndrome is a negative defect. If you could snap your fingers and give a child down syndrome, would you? Would you hesitate to snap your fingers, and fix the down syndrome of a pregnant woman's child? If you say yes to either of these, then I believe that you are irrational. Down syndrome is certainly a negative thing for a child to have.

    The question of whether a pregnancy should be terminated, and whether a person with down syndrome should be treated with respect are two very different things. I believe that people with down syndrome should be treated with respect, just as much as anyone else. But I also think that parents and society should be realistic about the negative aspects of down syndrome. It is no worse to suggest eliminating down syndrome than it is to suggest eliminating birth defects that cause limb abnormalities, they are both things that would ideally not exist.

    I think it is a good, but not necessary, decision for a pregnant woman to terminate a fetus with down syndrome and try to have another child. This is, in effect, no different than snapping your fingers and fixing the abnormality, though it requires more time and less magic. The problem is that people let their emotions about the life of the fetus get in the way of rational discussion. The fetus is no more capable of feeling and intelligent thought than the chicken that is killed so that you can enjoy KFC. So, in effect, the parent terminating the pregnancy is doing no more harm than slaughtering a chicken, but allowing a child who is free from down syndrome to come into the world.

  26. this is the next minority to protest for rights. soon they will promote them to political positions and the president because they "deserve" it. If they promote them to marry and make more downs syndrome babies, how is this helpful to a vital society? I applaud anyone's struggle to overcome handicaps, but it is foolhardy and wrong minded to assign saint hood to them and promote them out of political correctness.

  27. I am just thinking what would happen to them if they are given just to themselves and nature, and not to schools, I guess they would rock the world! ♥️

  28. People with downs syndrome are neither sub nor super human. The fact that anyone uses being 'human' as the standard to decide what is normal is frankly the greatest testament to the arrogance of humanity.

  29. We have a foster baby with down syndrome and while at OHSU, we met Karen. She is an awesome beautiful lady.

  30. No stammering, deliberate and eloquent speech; a level of intellect that seems fleeting even to those who have no disabilities. What a remarkable woman!

  31. How about aborting children likely to be criminals? It's just as outrageous as aborting anyone who supposedly has no purpose in life while there is a two-year waiting list to adopt downs babies.

    I am visually impaired and the product of a difficult pregnancy. Thank God I was born in a place and time where abortion wasn't available. If it was, I WOULD NOT BE HERE! It grieves me that so many people are not here who should have been because of the selfishness of narrow-minded parents. It is discrimination of the worst kind.

    For crying out loud, if you don't want your baby, at least let someone else be blessed with him or her. The fact is that people don't want to see these babies, thinking taking its life will solve the "problem." It never has. Ask anyone who's had an abortion. They will either cry or get really defensive.

    If you ever find yourself in a courtroom with your "Normal" child, standing before a a judge in an orange jumpsuit, remember this video.

  32. Wooo, me hizo llorar, tengo mi bebé de 7meses con síndrome de down y de verdad es muy inteligente y perseverante. Tal y como dice la conferencista.

  33. Thank you, Dr. Gaffney, for kicking all our behinds and teaching us by your fierce, humane eloquence to see the brilliant humanity of our friends that rock the extra chromosome! You rock, period!

  34. Great job Karen, I loved hearing you in Detroit too! You are such an inspiration to our whole family. Joe is going to put your autographed picture of the Lake Tahoe swim up on his bedroom wall. We are meeting for full inclusion in high school this week and we are excited but nervous too. Thank you for speak up and speaking out!

  35. Hello Miss Karen Gaffney, my name is Nataly Shiakalli Iam 26 years old and I leave in Cyprus. Iam so happy watched this video due to the fact, you give an excellent message all over the world explaining the meaning of Syndrome down you are clearly explained the skills, in a BIG WORD you people of syndrome down you do understand everything, you can do everything, you listen to everything, you hear, you learn you go to school you are special people with different successes…you can participate to everywhere…schools,universities, programs,competitions and win!!! because you worth again for me you are special special people you smile you say I can everything! We people could understand and come to the same situation like them because can happen to everyone this…we support..encourage…understand and learn more and more of the skills of those people due to everyone's has different gifts…talents…characters and social skills…Thank you very much with respect!

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