One Woman’s Fight for Human Lives: An Interview with Brooke Ellison

On September 4, 1990, 11-year-old Brooke Ellison was hit by a car while walking home from school. Ever since that day, she has been paralyzed from the neck down and dependent on a ventilator. After a year of rehabilitation and recovery, Brooke was determined to overcome any obstacles her disability presented her with and become as successful as she had always imagined she could be.

Brooke is the first quadriplegic to graduate from Harvard University and was the commencement speaker at her graduation in 2000. She graduated magna cum laude with a Bachelor of Science degree in cognitive neuroscience, after which she received a master’s in public policy from Harvard’s Kennedy School of Government in 2004.

With such an educational background, it comes as no surprise that Brooke is well versed in the topic of stem cell research. Working to promote embryonic stem cell research through activism and public speaking, Brooke fights for people with dire health conditions—people who she says will benefit monumentally from stem cell research. This research, she says, is fundamental to the type of scientific discovery that could lead to cures for such conditions as Parkinson’s, diabetes, heart disease, and spinal cord injuries. Brooke sat down with the Center for American Progress to talk about her life story and why our federal and state governments need to step up to the plate when it comes to stem cell research efforts.

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Center for American Progress: You have an incredible story—going from an accident that left you paralyzed from the neck down at the age of 11 to becoming the commencement speaker of your graduation from Harvard 10 years later. How did your incredible experiences find you in the career you’re in now, as a public speaker and activist?

Brooke Ellison: I think any time somebody undergoes a situation like the one I had 10 years ago, it’s almost like a responsibility that we have to use the events in our lives to help other people. And that was something that I really learned very early on, because so many people were coming into my life and helping me and making a difference and certainly helping me get through each day. And I felt a great sense of indebtedness and responsibility to use the help that other people had given me to in turn help others and to use the opportunities that I had had in my life to really turn that around and to make an impact and to carry forth some of the issues that I believe are important to the future of our society. That’s what I have been looking to do for a number of years now.

CAP: Why did you become involved with stem cell research efforts?

BE: Many people would believe that I would have personal reasons, simply because of my situation and the potential that research holds for curing [spinal] injuries, that I’m such a staunch advocate for it. But it even goes much farther than that. I believe that this issue and this research has so much promise, and it potentially will benefit every single one of our lives.

To not pursue it as aggressively as we can—I think that that’s really a shortsighted decision. Really, not since antibiotics has there been so much potential to revolutionize medicine the way stem cell research could potentially do. And to misrepresent the issue or mischaracterize it or to make it into something it’s not, when it really is all life-embracing and life-promoting, is really unfortunate; and every single one of our lives will potentially be benefited from it.

I was fortunate enough to have gotten a chance to know Christopher Reeve and to work with him and to be the beneficiary of so much of the progress that he really forged. And the movie that he made about my life was released literally a week after he passed away. I feel a tremendous sense of indebtedness to him and the work that he started, and to be able to continue that mission is an honor as well.

CAP: Could you talk a little bit about the movie that Christopher Reeve made about your life and the impact that it had on you and the impact you think it had on other people with paralysis?

BE: Actually Chris had originally contacted me after having read about me in The New York Times in 2000, shortly after my graduation, and let me know that he wanted to tell a story about somebody who was facing circumstances similar to his own. After having read about me, he thought that this was a story worth telling—a story that was compelling and interesting. The project was in fits and starts for a little while. And in 2004, it got going again and it was actually filmed in New Orleans in the summer of 2004, and that was an incredible experience in it of itself.

My family and I were able to go down to New Orleans and see a lot of the filming and spend time with the cast and the crew and offer advice as to how things transpired. Chris was absolutely amazing throughout the entire process. He was tireless throughout the entire time. He really set the standard for the work ethic, from early in the morning to late at night on the project. It was really a labor of love, and that meant a tremendous amount to me. It was really an honor to be able to know him and to work with him. And certainly the fact that he wanted to tell my life story was just an incredible honor.

I think that people know bits and pieces about him and about his life, but he was so much more than that. He was such an incredible human being who really gave his life to benefiting other people and to making sure that the issue of paralysis and stem cell research were really carried forth. And there’s no value that can be put on that.

CAP: There have been some studies showing that embryonic stem cell research could lead to the treatment of spinal cord injuries. For example, last June, scientists at Johns Hopkins were actually able to use neurons grown from embryonic stem cells to treat paralysis in rats. Do you think stem cell research has the potential to write a new chapter for you and your own health?

BE: I think that by all means yes, the potential is there, that the possibility is very much there. We just need to get the funding and the great minds to pursue it. Scientists are there to do it, the passion is there to do it, and we just need the funding to back it up. Whether or not it ever affects my life personally, it is such an important issue to so many people, to literally hundreds of billions of people. At the very least, it is a cause very much worth pursuing.

I often dream of the day that that will happen. I think about it all the time; it’s always in the back of my mind for sure. It would obviously be a gift, a wonderful opportunity to have those advances made. And I know for sure that any recovery and any progress is really paved by stem cell research.

CAP: And is this sort of progress limited to embryonic stem cells? Or could similar results be derived from adult stem cells as well?

BE: Both adult stem cells and embryonic stem cells—they both have their benefits. They both have their potential and possibilities, but I think that by and large, popular belief is that embryonic stem cells really have much more potential. But, research on all areas really should be pursued, and to limit ourselves would really be unfortunate.

CAP: What sort of dialogue have you engaged in with anti-embryonic stem cell activists?

BE: Every once in a while, I’ll get an email or a phone call or a response to something I’ve written from people who are not in support of the issue. And I have to respect everybody’s beliefs. A democracy like ours is really characterized by a diversity of beliefs and you have to respect them all.

I think it is unfortunate, though, when people base their opinions on misinformation. And there have been some who have done a really good job of espousing misinformation and characterizing the issue in a way that is not accurate. And that’s unfortunate. I think that if people are going to make their decision, they should have the information necessary to do it and to do it correctly. But every once in a while, I’ll get a message and it doesn’t ever feel good, but it’s fine.

CAP: Have you ever been approached in a hostile manner by some of the people who are critical of stem cell research?

BE: Not so much hostile, but people—they hold very strongly to their beliefs, and I understand that. And if that is the case, I’m not going to necessarily engage them in an argument, but [I’ll] give my understanding of the issue and what it means to me and what it means to millions of others. If progress can’t be made by doing just that, the conversation doesn’t have to go much farther than that. But I think that it’s important to not be intimidated by other people’s opinions or to be intimidated by a sense of disagreement, because that’s really how debate is generated and that’s how the best ideas ultimately come forward.

CAP: Faith is also a large part of your life. How do you respond to religious arguments that using embryos for research is the destruction of life?

BE: I think that that’s one argument that is unfortunately based in a little bit of misinformation as well. Stem cell research has nothing to do with abortion. It’s not about the destruction of life, it’s about the promotion of life. All these embryos in fact will be serving no other purpose. And to be able to use them to give life and to promote life to people who are in the most difficult of situations—I think that is what we all should be embracing.

That is what a very Christian message is: to care about each other and to help those who need it the most. That’s something that’s very important to me and I think that when people understand that it has nothing to do with arbitrary destruction of life or of embryos, I think that that helps get the proper message across. 

CAP: Other critics argue that there’s too much hype around the potential for embryonic stem cell research and that cures could take decades. How do you respond to those arguments?

BE: I think that’s also a faulty line of reasoning. Whenever we’re imparted in scientific inquiry, we never really know what the benefits are until we’ve discovered them. To say that we’re not going to pursue this research because we don’t know what’s going to come out of it—that’s completely backwards. It’s worth pursuing so that we know what the possibilities are and what’s going to come out of it.

To limit ourselves based on what we don’t know—we would have never gotten anywhere in scientific progress had we done that. I think that many scientists and researchers throughout the centuries have been victims of that, of people saying, “You don’t know what you’re talking about! You don’t know what’s out there to be discovered!” and if they had listened to that, then where would we be today? Probably not nearly as advanced as we are.

CAP: Some scientists believe that new sources of stem cells—for example, amniotic fluid—could put an end to the life debate surrounding embryonic stem cells. What are your thoughts on this, and do you think this means we should move away from embryos and toward other sources?

BE: I don’t think that we should keep ourselves hamstrung to any one type of research at all. I think all avenues need to be explored. But by finding one source of stem cells, I don’t think that that should discount another source, especially one like embryonic stem cells where there is just so much potential and very much justified excitement. Just to find one source shouldn’t preclude another source. It might be unfortunate that scientists are trying to find channels to get around the limitations that are already put on embryonic stem cells. It’s a lot of wasted intellectual capital, unfortunately.

CAP: You received a master’s in public policy from Harvard’s Kennedy School of Government. From a public policy perspective, what do you think the government can do to give scientists the resources to get to the root of paralysis, Parkinson’s, diabetes, etc.?

BE: I think that policy should be written in such a way so as to protect those who need protection the most. I think that that’s where the most progressive and open-minded and embracing legislation is written—with that in mind. Having said that, the best thing in research, and making sure that we hold that as the highest priority, is to find cures for disease and at the same time making sure that the quality is maximized until that time comes that there is a cure. I think that it should always be that those who are most in need are at the top of our priorities. And when we start looking at that differently, we need to readjust our priorities.

CAP: You mentioned earlier that last year you ran for New York State Senate on a strong pro-stem cell research platform. Although the election didn’t ultimately end up in your favor, New York has since moved to devote $600 million to embryonic stem cell research. Considering that New York will first have to build all new NIH-free facilities, will federal research restrictions hamper the success of such state efforts?

BE: I think it is imperative that the federal government and the state governments work in tandem. That’s how the biggest strides are ultimately going to be made for an issue that is as important as stem cell research. The benefits that it ultimately hold. The research needs federal funding. The best coordination will ultimately come from the federal government—I don’t think there’s any question about that. But until that happens, it’s really the states’ responsibility to do it; otherwise, they’re going to lose out on a lot of economic development funding from venture capitalists and biotech companies and things like that. And researchers from across the country will be relocating to other places that are more welcoming to the research.

So it really has to happen in tandem, but unfortunately if the federal government is not going to do it, then the states have to take that upon themselves. And when the time comes that the federal government does pass this legislation, I see no reason why the states and the federal government can’t work together to accomplish the mission in a very effective way.

CAP: If you had a few minutes to sit down with President Bush, what would you say to him?

BE: Right now there is the pending veto. The legislation sits on his desk and the veto is looming on the horizon. I think that humanizing the issue and making it one about life and about the benefits and really the gift of life that it gives to people who are in the most difficult of situations, is really the most persuasive argument right now. We could bring things down to dollars and cents, we can bring things down to the very technical aspects of the research, but unless it’s characterized in a human story or one person’s pain or suffering, it doesn’t really connect. That is what I would think is the most important message to get across. This is research about life and it does have the potential to affect hundreds of millions of lives. And there is the issue of hope that so many people are clinging to and have for years, and to strip that away from people is really unfortunate.

CAP: With President Bush expected to veto the stem cell bill, like you were talking about, what do you think the states can do to counteract such obstacles?

BE: There are some states right now that are already pursuing state funding for research, and I think that other states are seeing the writing on the wall, and they just don’t want to miss out on advances in the research. Even Texas has begun to see the need for this and is slowly turning around. As more and more states adopt legislation and permit the research and actually fund it, other states are going to catch on as well, because they’re just going to get left in the dust if they don’t.

So it comes down to what a state is willing to do—either have a bond initiative like California had done or direct appropriation of money like New York had done, it depends on the state in specific, so there’s a common definition of stem cell research and what it means and what it doesn’t mean and how intellectual property can either be shared or how guidelines can be set. As more and more states jump on the bandwagon, states are going to have to look to one another to make sure that the ultimate goal is most effectively achieved.

CAP: How can people get involved with this issue?

BE: Unfortunately it is going to have to come down to legislation right now. Like I said before, the minds are there, the passion is there, and of course the need is there, and now we need funding. And to do that, it’s going to require, more often than not, a legislative backing to do it. And it comes down to being vocal about it. Either writing to legislators or organizing to make a statement about it, and really addressing the need for something that is important. And it does affect many people’s lives, and it shouldn’t go ignored. And in addition to that, making sure that everyone is as educated as possible about what the issue is and what it is not.

CAP: Is there anything else you’d like to add, about your own experiences, or about stem cell research in general?

BE: This is such a highly debated and tremendously important issue right now. There are very few that have been so polarizing but at the same time stands to bring so many people together. And that’s what we need to be looking at is the way that legislation like this and issues like this can bring us together, and can foster life in a positive way, and be a beacon of hope for so many millions of people. There are very few opportunities like this that ever come around.

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