 Good afternoon. It is my great pleasure to introduce Dr. Marcia Saxton. Dr. Saxton is the Director of Research and Training at the World Institute on Disability and teaches disability studies at the University of California, Berkeley. As a leading investigator within this field, Dr. Saxton brings sensitivity, compassion, and a disability rights theoretical framework to challenging conversations. Her work has reframed the conversation between medical professionals and persons in the community who identify themselves as disabled or as Dr. Saxton identifies them as disability consultants. She has written on the history and present use of eugenics in articles such as disability rights and selective abortion and prenatal diagnosis and pregnancy options. Her regular interviews for national media illustrate her ability to confront uncomfortable and ethically challenging topics with sensitivity and compassion. She has published three books, two films, and more than 100 articles and book chapters on topics including disability rights, women's health, and genetic screening issues. She served on the Ethics Committee for the Human Genome Initiative. Dr. Saxton received her doctorate from the Union Institute in Cincinnati. Please join me in welcoming Dr. Saxton to the podium. Oh, wait a minute. Tech, I need tech. I don't have my, where is he? San Francisco where I come from, the San Francisco Bay Area. Beautiful Golden Gate Bridge. I have this on here. Thank you for caring about these issues and for inviting me to talk with you. I will offer a perspective that's less often heard and central to the issues that we're discussing. I will discuss people with disabilities in relation to reproductive technologies. This conference asks us to consider how innovations in reproductive technology challenge us to think about what it means to be human. I get a kick out of that tag phrase, what it means to be human, often mentioned in discussions about genetic technologies. What are we asking ourselves? Can we be true to the best aspects of our species, Homo sapiens? This is not quite, this isn't working. Anyway, I'm going to try to wing it until we can get straightened out. Where is our guy again? Maybe you should just hang out here with me. Half of the text is not visible. That's it. It's nice to have you here. My big question is about what it means to be human. Can we work together on our planet with humanity? Humans seem to have really different points of view here. With reproductive technologies, it's the moms who are the most often challenged to think here. Here's a loving mom, thinking hard. Oops, wrong species. But like all moms, she loves her offspring and does the best she can to be a good mom. Okay, here we are, Homo sapiens. Oh, no, it's guys with weapons. How's this? Better? People with disabilities find ourselves in a tricky position regarding reproductive screening and editing technologies. We are the humans who define who embody the dreaded impairments that genetic engineering wants to avoid. We are the ones potentially screened and edited. Some might assume that disabled people want these technologies. Some do, some don't. Why wouldn't everyone want to be cured? These technologies are complex for people with disabilities and our families. I can't truly represent the disability community, though I'm sometimes asked to do so, like here at this event. The views in this population are as wide ranging as any broad population. I'll try to do justice to this range of views, but I'm not going to pretend to be neutral here. So, who are people with disabilities? We come from all social classes, ethnic groups, ages, genders, sexual orientations and lifestyles. The definition of disability used by the Americans with Disabilities Act, the ADA, passed in 1990, is this. Those who have substantial physical, sensory, mental or emotional impairments that limit major life activities. Here is President Bush, the senior, signing this bill with his famous quote, let the shameful walls of exclusion come tumbling down. This population in the United States is estimated at about 60 million people. Most disability, disease and early death is caused by war and poverty. Worldwide estimates are around one billion people with disabilities, about one sixth of the population. These pictures show disabled people all around the world. Some people identify as having a disease or chronic illness with a possibility of cure or change. Some disabled people have stable conditions without prospects of much change over time. There are no clear lines between these groups. Everyone with a body has the potential to join this group, especially as we age. My work is supporting this worldwide movement for human rights with research, teaching and advocacy. We have a lot to do and we have made great progress. It can be hard having a disability somewhere between inconvenient and devastating. There may be suffering, pain, medical treatment, surgery, all kinds of side effects of medications. There may be early death. What makes it much more difficult is the oppression. You want to go somewhere but the transportation isn't accessible. If you can get there, you find out there's no ramp or the elevator is broken. Being stared at, teased, bullied, called ugly or stupid, a monster, a retard or inhuman or extremely uncool. Told you don't belong, kept in a separate classroom, assumed you can't do the job even if you have the skills or there's no interpreter or captioning or the handouts aren't accessible for the blind people, assumed you're cheating on your benefits forms. Told you're too expensive, too much work, assumed you are asexual, you can't or shouldn't even want to date or marry. Or you're forgotten in the flood. If you are a person of color or gay or an ethnicity that makes you even less normal, you're even more invisible, left out, invalidated, erased. Most non-disabled people mean well. It's not their fault that they don't know how to get past the awkwardness, fear of saying the wrong thing, being patronizing, asking intrusive questions or keeping distant. But, well, ow. Ancient people's attitudes about disability come from fear that God's were punishing individuals or families. Early people tried to explain mysteries of human life with superstitions, passed down eons of generations, resulting in stereotypes still around. Positive stereotypes, view people with disabilities as saintly, or heroic or innocent, which also objectify disabled people as them, not us. These stereotypes are stuck in place because we're not talking enough about disability. Shhh. Don't ask, don't stare, don't talk about it. In the 1950s, I was a little girl in the classroom with metal leg braces. I had surgery at Shriners Hospital to correct my leg weakness from spina bifida. I missed my family but I got to connect with other kids with disabilities. I grew up wanting to change the way disabled people are viewed and treated. When I was 14, I decided to get information about my sexuality. I was raised to think of myself as a typical girl, but because of my disability, I wasn't sure what to expect. Could I have children? Could I enjoy sex? My mom found a doctor and expert in the field. He examined me and I asked my questions. The crassness of his answer stunned me. He said if I were to marry, my vagina could please a man, but I shouldn't consider pregnancy because I might produce another one like myself. I still hear this from disabled women and girls. Told the same thing by doctors. My late husband Mark was a wheelchair user, an activist in the disability movement. Strangers would sometimes approach Mark in public and say, you handicap people are amazing. He would smile but inside roll his eyes at this well-intentioned but demeaning assumption that disabled people can't be expected to do much at all. So just being out and about was amazing. The disability community is amazing, but not in trivial stereotype ways. I work in a beautiful building, Ed Roberts campus in Berkeley named after our famous leader. There's a mural of the 1977 protest at the San Francisco federal building. 200 demonstrators with disabilities occupied the building for 26 days. This forced the officials to sign a federal law that had been put on hold for years, nicknamed Section 504 which prohibited federal contractors from discriminating against people with disabilities. This was in 1977. The language of this law was modeled on the 1964 Civil Rights Act prohibiting racial discrimination. The disability community has organized thousands of campaigns and protests against discrimination including dramatic, effective civil disobedience. We've handled the political process well, active in the passage of the Americans with Disabilities Act and other powerful laws now copied around the world. The ADA prohibits discrimination in employment, government, public accommodations, inclusion in schools at all levels, transportation and telecommunications. Some of my students in medicine and social welfare signed up for my courses thinking the courses will be about helping the handicapped. They soon find out that they are learning about a successful worldwide movement for liberation from oppression. We have a long way to go to fully implement the ADA. We must continue to fight for this law. It's being challenged in Congress now. Why has society made this such a steep climb? There's a back story here. In the late 1800s fear and superstition about disability along with distortion about inheritance made its way into public policy in the form of eugenics ideas and practice. Eugenics is a fake science that tried to improve the population by controlling who gets to have children. This tree was the eugenics symbol. Their slogan was eugenics is a self-direction of human evolution. This is a pamphlet of that era. Eugenics believed that human flaw like being poor or committing crimes were inherited. They thought desired traits such as intelligence, musical ability and good character are also inherited. They wanted the right people to have children and the people with the bad traits whom they called the socially unfit not to have children. These ideas were put into laws. Here's an old poster for the public describing eugenic ideas to quote unfit human traits such as feeble mindedness, epilepsy, criminality, insanity, populism and many others run in families and are inherited in exactly the same way as color in guinea pigs. If all marriages were eugenic we could breed out most of this unfitness in three generations. It goes on to say selected parents will have better children. This is the great aim of eugenics. This is Carrie Buck and her mother Emma. In 1927 the U.S. Supreme Court case Buck versus Bell allowed the forced legal sexual sterilization of a woman chosen for this case, Carrie Buck and then thousands of people to follow. All labeled feeble minded and then sterilized. The case inspired the famous comment by Justice Oliver Wendell Holmes. Three generations of imbeciles are enough. What is striking here is that Carrie Buck was not feeble minded or cognitively disabled. She was poor and she had been raped. Carrie's mother Emma, Carrie herself and Carrie's daughter Vivian, the baby that resulted from the rape were assumed to be disabled. The fear of inherited disability was so strong eugenics saw disability where it didn't exist. Between 1907 and 1937 more than 70,000 surgeries were performed in 32 states, mostly on young, poor, uneducated people assumed to be feeble minded or people with physical disabilities to prevent their having children. This is the Lynchburg Colony, this photo where thousands were sterilized in Virginia. Eugenics was carried to the extreme during the Nazi Holocaust. They got their idea from the United States. I'll come back to this point. We'd like to believe that this horrific era is past. Many worry that these ideas persist. For the last 40 years, expectant parents have been offered prenatal tests to detect disabling conditions in the fetus. If a genetic flaw is discovered, the mother is offered an abortion. It gives the mother a choice. Studies show that women get pressured to use prenatal testing as the responsible, healthy, right thing to do during pregnancy. Some families want this option. But other expectant parents may feel blamed if they decide to raise their disabled child. These reproductive options are sometimes called the new eugenics. I'll come back to this point as well. Let's come back to the president at the moment now. It is my great pleasure to have worked with many hundreds of people with disabilities in all kinds of organizations. This beautiful center where I work, Ed Roberts Campus, houses a dozen disability organizations, centers for independent living, rehabilitation, sports and fitness, a child development center, telecommunications services, a medical clinic, services for the blind, a law center and my agency, the World Institute on Disability. Many disabled people are reconsidering our unique bodies and ways of being as good. Not shameful, not to be hidden. We're not just interesting or okay or valuable diversity. Our bodies are artful, sexy, beautiful. This is a picture of an integrated dance group called Access Dance Company. I went to my first disability pride march over 25 years ago. We've grown in our pride. One of the breakthroughs in the disability community in the 70s was in reframing the problems of disability. Here's a chart developed by the field of disability studies to explain. This has helped us rethink the solutions to the real problems. You'll see in the columns in this contrasting models of disability on one side the medical deficit model where disability is defined as a deficiency or abnormality compared to the social model definition which is disability is a difference from typical or average. In the medical deficit model we see that being disabled is a negative thing, inherently bad or sad. Disability resides in the individual body or person that's flawed. The remedy for disability related problems is cure or what we call normalization which is trying to make the person look as normal as we possibly can. The agent of remedy is the professional, a medical professional or social worker usually who helps or fixes as much as possible. In the social model the problems are described differently. Being disabled in itself is neutral, a quality or feature of many humans. Disability resides in the interaction between the individual, the environment, and the society. The remedy is change in this interaction. For example, creation of access, accommodations and exclusive policies and practices and the agent of remedy can be the individual, him or herself, a disabled peer, an advocate, an assistant or a technology which changes the interaction. The world community of disabled people has created the United Nations Treaty, the convention on the rights of persons with disabilities signed by 160 countries. Guess which one of the countries hasn't fully ratified this? The United States? That's another story, another conference. Why aren't the fantastic successes of this movement common knowledge in every modern history book? It's because of the medical deficit model. Much of the public continues to believe that before we can have good lives we have to get cured. Hollywood is not helping. A recent film, me before you, brought protests by people with disabilities around the world. In this film, sorry about the spoiler, a handsome, rich young man with a flamboyant lifestyle becomes quadriplegic in a vehicle accident. He's deeply depressed and wants to end his life. His family hires an adorable young woman, his caregiver and the couple have a romance. Yet the young man persists in his suicidal thoughts and in the film, heroically, yes, bravely achieves this goal. It's sad, but then the final scene shows the young woman smiling wistfully about his suicide as if it really turned out fine that he died because disability is intolerable. How the story fails us is that, yes, newly disabled people face a huge challenge in adapting to a disabled body. But with mentors and peer counseling and great new assistive technologies like cool wheelchairs, screen readers and voice activated computers and assistance from other people, disabled people can have good lives and do great things. A few films and HBO series are trying to challenge these stereotypes. The progress is slow. With disability, you may not be able to do everything by yourself. This is one of the strange benefits of disability. Our culture's illusion of rugged self-reliance may have to be interrupted with some connection and help. Does disability have something to offer us as a society? An example is the wheelchair ramps and elevators instead of stairs. Benefits everyone, moms with strollers, the piano mover, the caterer's cart. But really can there possibly be anything good about disability? Often the experiences of disabled people are thought to be about those people. But sometimes they apply to everyone. For people with asthma and allergies to environmental toxins, we use the metaphor canaries in the mines. In the old days, the canaries put in the mine shafts, alerted miners to toxic levels of gases. The canaries would die first, so the miners would get out quickly. Our increasingly polluted environments in our increasingly polluted environments, people with chemical sensitivities alert us to address pollution before none of us can breathe. Habin Gurma is a lawyer and an author. She's the first person who's both deaf and blind to graduate from Harvard Law School. Did I catch some of you thinking that's amazing? Well, it is. Not because she's disabled or went to Harvard. That's nice. But because she's a human being. Human beings are amazing. On her website, she writes that people with disabilities drive innovation. Disability creates a limit. Limits inspire new inventions. One of the first typewriters was developed in Italy in the 1800s by a blind astronomer named Wanda Diaz-Mersed who developed a non-visual system for studying stellar radiation called sonification. This helps her sighted colleagues who need non-visual ways to find patterns and huge amounts of visual data from stellar photos. In the early years of my work in the disability community, I had an epiphany, a big insight. I attended a conference in Germany about the independent living movement where disabled people are supported to live in the community. The 40 of us worked together to develop a non-visual system for studying stellar radiation called sonification. This helps her sighted colleagues who need non-visual ways to find patterns and huge amounts of visual data to live in the community. The 40 of us were quite a collection of different bodies and ways of moving and communicating. One beautiful young woman named Elka was just completing medical school training. She had no arms. Our group included people with crutches, walkers and wheelchairs, blind and hearing impaired. We had fun laughing and sharing our stories. One night we viewed a documentary about the impact of the Holocaust on disabled people. 120,000 people with physical, mental and emotional disabilities were killed first as practice for the final solution, the killing of 6 million Jews and millions of others. We were all crying as the old newsreel described disabled children and adults as miserable, their suffering as in human, the cost for such unworthy life as an enormous burden on society. I realized the German people better understood the extremes of eugenics. The next day we took a break from these painful issues at this conference. The entire group went on an outing to a local village to sightsee and taste the restaurant fair. We broke up into small groups to explore the town. Later in the market plaza I noticed the startled glances of the local townspeople. Maybe they thought we'd escape from the circus. But for me, I felt a liberating sense, a belonging to the whole world's community of different people. We were such a rich collection of experiences, perspectives and skills. No matter that the world couldn't appreciate our contributions, our unique value in the scheme of things, we were made all the more valuable about it. We are the world's best kept secret of coolest people. Spaces like Ed Robert's campus shown here enable us to find each other in a workable location with access features for people with physical, visual and hearing disabilities. We connect with each other and educate the public about our lives with visual art, theater, music, dance, song. Because of the common themes in our lives, we've created our own culture, which we probably call disability culture, with an emerging set of values that cross lines of country and language, like interdependence, solidarity among disability categories, celebrating all aspects of our lives besides disabilities such as race, ethnicity, class, genders, age. We find humor about everything in our lives. Our community has many comics, some in wheelchairs who call themselves sit-down stand-ups. This is Josh Blue, a popular comic with Ribble Palsy. Deaf people who speak American sign language are especially proud of their community, their own language, humor and values. Some deaf people use hearing technologies, but many reject tests that screen out babies that could become deaf people, which could threaten the deaf community's existence. Does the broadest disability community want this new gene editing technology? Many individuals and families are hopeful, yet many feel jaded from the promise of cure, often exaggerated by the media, put into scientific grant proposals that promise cure just to justify funding basic science or the fascination of new technologies. Those who are connected to our community say we want good healthcare and needed services. We may imagine a cure someday. Wouldn't that be great? And yet we prioritize our rights to social inclusion, to removal of barriers to public spaces, accessible transportation, education, employment, to connection and acceptance of who we are just the way we are. In Iceland, Down syndrome is almost eliminated. There is not agreement that this is good. Sociologists Kitty Felker interviewed mothers of children with Down syndrome. They reported that before their babies were born, clinicians stressed the horrors of life with disabilities, while the families themselves described the satisfactions of raising disabled children. Sociologist Diane Beeson studied attitudes about genetic interventions in families. Some expressed reservations with the idea of admission standards, which seems to have the effect of reducing humans to their DNA. Here's Lydia Brown, one of our champion leaders of disability pride and a brilliant scholar. But are some disabled people or families defending our existence as a valid population because we're stuck with being disabled and what the heck other position can we take? Among other oppressed groups such as people of color, poor people and gay people, their inherent characteristics have been used as justification for mistreatment. Perhaps this has changed or may, we hope. With disability, once options may be limited, but hurtful stereotypes distort the public attitudes and how disabled people might internalize these perceptions. So it's difficult to know the true impact of disability on the individual's life experiences. Here are a few of my coworkers at the World Institute on Disability in a visit with Judy Heumann on the right. Judy is one of the most widely recognized disability rights activists in the world. Isn't it ironic that this population of people has fought so hard for a sense of pride in ourselves? We live in a tremendous time of success in achieving access and inclusion, civil rights protection and wonderful new assistive technologies and also a time when other technologies propose to eliminate this constituency. Yes, we might feel a bit defensive. The New York Times has this past year run a wonderful weekly column on disability. Here are some of the titles to lure you into reading. There's the link. They are revealing titles. For example, disability and the right to choose. The subtitle is, I'm pro-choice but aborting a fetus with a defect should not be a given. Here's another. Why is our existence as humans still being denied 27 years after the Americans with Disabilities Act? The myth of disability sob stories. The idea that we play up our impairments to gain unfair advantages is damaging. Trying to embrace a cure. The genetic illness my children have may soon be eliminated but what will be lost with it? Stories about disability don't have to be sad. I am not what people expect an eighth grader with a disability to be. I am happy. If you're in a wheelchair, segregation lives. As a black woman, I am keenly aware of being ushered through back ways, sketchy hallways and side entrances. Another mental illness is not a horror show. I discovered I was someone's idea of a ghoul or a zombie. In this New Yorker cartoon we see talking elephant heads growing on a potted plant. One says to the other, the scientists never stop to ask if they should only if they could. Other speakers, here we will explore the dangers of off-target mutations and unintended unforeseeable mistakes potentially caused by CRISPR-Cas9 and other interventions. Such mistakes as has been mentioned could have permanent impact on future generations. The unspoken messages of CRISPR-Cas9 are, it's not really eugenics if we just want to help selected women have healthy babies. Can we just employ a little eugenics to eliminate what we're sure are the worst baddest of the human defects? Isn't it worth the risk experimenting with the human genome to try to eliminate the clearly worst traits? We need to ask, can there be safeguards against crossing the lines of health into charged categories like skin color, facial structure, body size, hair and eye color and intelligence? Government regulations are suggested as a way to control for these dangers. Do we really think government regulations could hold any lines with the extremes of hate and fear of difference now exposed in our world directed at every marginalized group? Here are my recommendations. Banned germline editing on human embryos in the U.S. as is in most other countries. Conduct worldwide public dialogue to educate everyone about ethical concerns. Address the social justice issues of disability and disease in medical schools and training in genetic research. Seek out the voices of people with a full range of disabilities. All health professionals must adhere to high standards of unbiased prenatal counseling. Parents and teachers, raise issues of disability with your young people. Young people, raise disability with your parents and teachers. They need your help and understanding with these issues. For everyone you know, help each other get past disability as being about those people. Encourage everyone to get to know ordinary, cool, disabled people living creative lives. Fear of disability is not about them. Fear of disability is about fear, exclusion, limited connection with disabled people. Tell them fear of disability is about you. Get some help with that. So what does it mean to be human? God, mother nature, DNA, gave us our human lives to live in our vulnerable bodies. Disability like everything else about being human requires us to live with resilience and connection. Imagine our world where we've gotten so beyond our fear of difference that everyone is welcomed, not despite our differences but because of our differences, because we value difference. A world where everyone is welcomed as the first priority. Let's go for that world. So thanks to Dr. Saxton and Dr. Korn for those two talks. It turns out we're just about on schedule.