Podcast: Rethinking Disability: The Egans and Down Syndrome

Meredith Carlson Daly: Welcome to Milestones, a podcast featuring research and insights into child health and human development.

I am your host, Meredith Carlson Daly.

October marks Down Syndrome Awareness Month, a chance to celebrate the abilities and accomplishments of people with Down syndrome. According to the Centers for Disease Control and Prevention, about 6,000 babies each year are born with Down syndrome in the United States. It is the most common genetic cause of mild to moderate intellectual disability.

Research on Down syndrome is a vital part of NICHD’s mission. We play a key role in the newly launched INCLUDE study, an NIH initiative to improve the health and well-being of people with Down syndrome by examining conditions, such as Alzheimer’s disease, that affect this population more often, more severely, or earlier than they affect others.

Today, I’m pleased to speak with Kathleen Egan, and her son, David. Both work to raise awareness of the needs of people with Down syndrome. David, who was born with the condition in 1977, has noted he belongs to the first generation to break free of the institutional barriers that have impeded people with Down syndrome in the past. Thank you both for joining me today.

Kathleen, let’s start with you if you wouldn’t mind, giving us a little background. Can you bring us back to the time when David was born?

Kathleen Egan: I was a graduate student at the University of Wisconsin in Madison with my husband. When David came he was our first child. We knew nothing about Down's syndrome. I told the doctors to all go away that he was a beautiful baby and I loved him. Essentially, when I accepted the fact that he has Down syndrome, I wanted to find ways to fix it, you know, to find what's wrong with him, how can I help him. I wanted to be a good mother. And very quickly, I found out there was nothing to fix. David was a blessing in many, many ways. He was teaching me, even at an early, early age, he was teaching me to be a mother. We had a group of friends in Wisconsin who would visit with us and David was the center of attention. He was the star early on. It's a difficult time when a child is born with Down syndrome, but I think the blessings and the joy are something you have to discover.

Ms. Daly: You said he had shown a kind of leadership from a very early age.

Dr. Egan: Very early, yeah.

Ms. Daly: Can you give me an example?

Dr. Egan: We took David to a place called Kiddie Camp to special education program in Madison. I didn't care for it, I mean, the people were kind and they were doing a lot of activities too, but everybody had a disability. Those were the times where people sent their kids to institutions or special education programs. I knew that David needed something else and all children with disabilities need to belong in a community. And so, I started a little playgroup in my house and friends of ours who were graduate students would send their kids to our house.  David would give his toys to the kids. So, the kids would come back. He was a good networker early on in his childhood. We got him involved very quickly at the Waisman Center and that was a wonderful beginning for him. He was completely included in a program for younger children. He was the only one with Down syndrome and another kid with autism and there were 10 other kids without visible disabilities. The program started in 1979. His sister, who was born 3 years later, wanted to be in the program. She loved it. She thought it was the place to be and they didn't allow kids there until the age of 2 and she was 18 months old, so she told them she was 2-years-old and she could be there.

Ms. Daly: And it wasn't that common back then to have, as you mentioned, he was the only one there with any kind of disability.

Dr. Egan: that's right.

Ms. Daly: How did you come around to thinking, I want my son needs to be with kids of all abilities.

Dr. Egan: I watched the Kiddie Camp program and I knew that he needed a role model. I could see him imitate, you know, and the fact that a child imitates other children – that means you need to give them a chance, an opportunity, to interact with everybody. There where physical therapist and fine motor skills therapists who would come to our house once a month to film David. So, he was a research project for the university. So, I ask about the Waisman Center, I said, do they have mainstreaming, a place where we can, and they said, “We could start it. You know, we can get it started.” And so that's when many other graduate student friends of ours also offered their kids to be there.

Ms. Daly: David, you have been a trailblazer from a young age. You were an athlete swimming at a young age for the Special Olympics. Can you tell me how this affected you growing up?

David Egan: Well, I didn’t really know too much about Special Olympics until I was 8-years-old. In Special Olympics, I thought it was interesting to see other individuals with disabilities at that age trying to find their start in the organization of Special Olympics. I really dived right into it.  

Ms. Daly: And why swimming? Do you remember why that was what you chose?

Mr. Egan: Well, there were a lot of choices I could have made and I'm not sure why I picked swimming for some reason. I was not sure if I wanted to jump in the water and I was like scared or afraid of the water for a while and I'm not sure what happened, I just got right into it.

Ms. Daly: You’re brave.

Mr. Egan: Yeah, and I did. I will still say to people that where people feel that way, they shouldn't feel that way. Not knowing how to experience something like that – that will be a big part of your life there later on, so that will help me quite a bit.

Ms. Daly: Gave you courage.

Mr. Egan: Yes, you can say that. I think a lot of these things come from Eunice Kennedy Shriver. The things that she has done herself and her sister, Rosemary. And I think it's very great to talk about that in light of my, my growing up and how I started in the organization, having my family there with me was tremendous in my life.

Ms. Daly: So, tell me a little about that because, of course, Eunice Kennedy Shriver is who the National Institute of Child Health and Human Development is named after. And you actually got to meet her. So tell me about that.

Mr. Egan: Yes, I did. It was a unique experience because I have to tell you, I never met Eunice before when she was a lot younger. I only knew her when she was much older in her life. So, it was great to be around her, get to know someone like her. She comes from a family that everybody knows so well.

Ms. Daly: So, you have had public speaking experience that would intimidate many people, yet you seem to be very comfortable in the spotlight. You were the first person with an intellectual disability to serve as a Joseph Kennedy fellow on Capitol Hill.

Mr. Egan: Yes, Joseph P. Kennedy Jr Public Policy Fellow.

Ms. Daly: And you have your own website: www-dot-davideganadvocacy-dot-com. Tell us how these leadership roles have made a difference in your life.

Mr. Egan: Well, first, I never thought that I could do those things to begin with.

Ms. Daly: Kind of like swimming.

Mr. Egan: Yes, like swimming and other sports that I’ve been involved in too. It was a very transformative period that has happened. And I don't know if that is the future for the disability community, but I wanted to do something like that to show that many other individuals with disabilities can do those same things too. I can relate to anybody that I come across. Encountering different individuals, audiences that I speak to and I relate to young and old individuals with all types of abilities. I could just know, that I have a sense that there is something going on, that something tells me that like, where should I take this conversation, could we take it to another level and where it would take us and so that's something that’s always been there with me and that's what kind of guided me from childhood to adulthood.

Ms. Daly: So, you mentioned Kathleen that from an early age as a researcher David was also filmed at home. You’ve been active in NIH research studies.

Dr. Egan: Yes

Ms. Daly: DS Connect, which is led by NICHD, why is it so important to you both that you contribute to research?

Dr. Egan: I mean both my husband and I were researchers, so we believe basic research is essential to improve science and to improve our understanding of human conditions and the physical world. My husband is a physicist. I'm more into psychology and education. So, it's important to understand, you know, many times I think people are afraid, not because they're not kind, I think because of ignorance, so I think having good facts about people with disabilities, it's not to make it look like everything is rosy and easy, but I think a person with Down's syndrome can live a full life, a really amazing life. However, you know, for sure there are challenges. You have to have expectations, so the more we can improve our understanding of the condition and then treat people with Down syndrome as people - individuals - they have unique personalities. The fact that David is a leader - that's his skill. The fact that he can speak publicly - that's his talent and that's something to discover. Other children with Down syndrome may have other talents; they may like to act, they may like to do other jobs. You know, so you have to discover what's unique about your child and it’s the same for any child. I have four kids. Each one is wonderful, but each one of them is different. So, the fact that we can study Down syndrome is going to maybe enlighten us about conditions that affect all of us, especially Alzheimer’s. It's a misunderstood condition that happens. And in the United States, we hear more and more. And our children are going to live longer, I mean when David was born they told us he would die at age 25. Well, now they're living much longer. But also I would like more than basic research. The fact that we're calling it INCLUDE, I like that there are three aspects to the INCLUDE project, that you have basic research, you have clinical trials, and then building a cohort of a population that you can study, a database, but I would like to see more guidelines too, because, you know, from basic research to come to something that we can use, is going to take many years. I know that. So, I'm hoping that at the same time that we do basic research, we begin studying certain things that can have quick impact and that are simple things that you know not only medication, maybe lifestyles, adaptive behaviors, maybe how inclusion can help adults with Down syndrome not to lose their abilities. David has social intelligence; he has incredible social intelligence and we don't have tests to show that. We have I.Q. and we measure success by people's I.Q., by their S.A.T.'s scores. And how do we measure people who have that intuition that David just talked to you about. He understands people; he knows how to network and, so I think that intelligence that other emotional and social intelligence is something maybe we need to measure differently and find out more about it. 

Ms. Daly: That’s a perfect segue, David, what do you hope our newest initiative INCLUDE.

Mr. Egan: I think it's a very interesting, innovative, ambitious one as well, where you try to bring in so many compelling, competing viewpoints that are sometimes not often recognized as much in the disability community. And I think it stems from that history of people with disabilities. And I think it has really got to the point in our daily lives that what's next for us. I mean, we don't really know that and so I think the word INCLUDE by definition, maybe different when it comes to medical research and scientific community and how the language in which we speak is not is not always natural to many people. I can remember an event that I attended, a White House event, and that was when they changed the term, ‘Mental Retardation,’ to ‘Intellectual Disability.’ It was great to see that term and all federal government to really witness something like this to happen.

Ms. Daly:  And you were there for the signing.

Mr. Egan: Yes, I did.

Ms. Daly: And what did that mean for you?

Mr. Egan: It means different things for me. I mean I can tell you in my life, I was never bullied; I was never picked on, so I'm used to it. Many people in the disabled community, tend to be the victim and play the victim’s role, that something is wrong with them, some think they have to, they’re very sensitive on how they want to defend themselves and so I come with this with an understanding that like there's still so many things that we can still do. And it can be public policy, it may not be public policy, so what is INCLUDE or inclusion really mean to so many people in so many different examples that people are highlighting the great potential that is before us. Back in the day, we never had that. So, there are tremendous advances already happening, but we are at the point where enough is enough. When it comes to the pressures that people with disabilities every day feel, that kind of exposure about them put them in a different light, sometimes are not often explained enough. And I think that's where we are that we need to keep continually examining, explaining, result-driven. Kind of way of saying to people, like, ‘I know what you've going through, I can relate with you, but get over it.’

Ms. Daly: Kathleen, give me a sense of how you would advise a young mother, who, granted it’s a few decades later, who discovers that the baby she has just delivered has Down syndrome?

Dr. Egan: I think don't be afraid. I was scared, and I have to admit it took me 6 months. I was in denial. I refused to accept the fact that my child had Down's syndrome, so if you have those feelings, they’re natural feelings. However, my advice to you is, believe in your child, believe your child has talent. That talent is maybe hidden at first, and you will discover that your kid brings to you something unique about themselves. Having Down syndrome –  David always says in his in his speeches that syndrome doesn't define him as a person. He comes from a family with certain specific genes, certain personality. He is who he is. He is David Egan. I think your son, your daughter will have that unique personality. There may be challenges, those challenges, we have to admit that challenges exist for all of us with disability or without a disability. Just discover the talent, they have talent, it takes time, it takes patience. And my husband would say accept your child and don't think you have to tolerate the child, you know, accepting and having expectations. If you don't have expectations, a child will not rise to the occasion. But if you have expectations, they will amaze you. They are amazing.

Ms. Daly: And David, you have accomplished quite a lot. You’re a gold medalist, a Special Olympics gold medalist, you are a International ambassador. You've worked on Capitol Hill. What is next for you?

Mr. Egan: I often think about that question and I don't know if I have an answer for it. I don't think anybody does. But I’m always constantly reminded by that, and that in itself kind of gives me driven, focused up to a point where I could run with this question, see where it takes us in so many different directions. And it's like that's the point I'm still trying to really figure out what other examples could we have that are out there. And I think I want to highlight one of the major accomplishments that we have done that I am proud of is that October is Disability Employment Awareness Month. And so, everywhere, all over the country there are explaining so many different things that are happening throughout the country and what this month means to them is a tremendous opportunity to really blow away the obstacles, blaze your own path, see where it takes you. And I think that in itself is what the future may hold.

Ms. Daly: Is there anything I have not asked you that you would like to share.

Dr. Egan: Maybe one last thing, although, I never like to follow David because he has to have the last word. I want to encourage families to sign up for the clinical trials and to participate with NIH. NIH cannot help us if we don’t help them, so we need to volunteer our time and volunteer our children. At the same time, I would like to tell researchers and scientists to while they do basic research, to begin maybe spreading the word to their regular medical profession and nurses, many time medical professions are not trained in the school system to learn about disabilities and how to so, if we can maybe do both, if we can maybe do clinical trials, but also do basic research, but also begin educating at the university level, medical doctors and psychologists on how to understand the brain of someone with Down syndrome, the brain is different, but it's a good brain, so we need to understand it.

Mr. Egan: I can tell you, I know what it's like to be researched and, and many people may not know that, they, they, may not have participated in a study like I have. I can tell you, I’ve done my fair share.

Dr. Egan: David is in textbooks about obstetrics because when David was born, there were no pictures of kids with Down syndrome in the textbooks of nurses. So, one of the nurses that I was working with in Wisconsin, she put David’s pictures and the importance of family support and not only they immediate family, but the extended family is important. So, it's in those textbooks now and it's nice now to know that the nurses and nurse practitioners have really gone out of their way to make sure, to let their students know how to handle and how to work with families with people with Down syndrome.

Mr. Egan: And also, they have listened to my heart and my heart makes loud noises.

Ms. Daly: Your heart has a lot of passion, I can tell that.

Mr. Egan and Dr. Egan. Yes.

Dr. Egan: Thank you so much and we really wish NIH and the INCLUDE project success and we hope that many, many families will support you and give you the data that you need.

Ms. Daly: Well thank you both so much for joining us today. You've been listening to another episode of milestones. I’m your host, Meredith Carlson Daly.