I am so happy to share with you that I was recently notified that I had been chosen to be a World Economic Forum Young Global Leader, class of 2014. As you might know, the World Economic Forum is an international institution, founded by businessman and philanthropist, Klaus Schwab, in 1971, which is committed to improving the state of the world through public-private cooperation. This organization works to build communities that can define challenges, solutions, and actions to promote global citizenship.
The World Economic Forum Young Global Leaders community, as described by YGL director, David Aikman, “assembles the world’s most outstanding next-generation leaders who have a proven record of extraordinary achievement and helps them further develop in their leadership journey.” To get a fuller sense of what this community looks like, take a look at this video:
The honor of being selected as one of the World Economic Forum Young Global Leaders is a distinction for which I am both humbled and proud. But, the selection, itself, is only one small part of this honor. The real privilege is in the work that lies ahead, in the opportunity to leverage the World Economic Forum’s influence to make the world a more just place. As Young Global Leaders, that is the charge the 214 new members have been given, and that is what makes this honor unlike any other I’ve ever gotten.
It was the work I have done in stem cell research, and helping to bridge the divide between scientific knowledge and what is known about scientific knowledge, that precipitated my nomination and selection into the Young Global Leaders community. This is a cause I have been proud to contribute to, in the hopes that my efforts could help make the path to medical breakthroughs a smoother and less impeded one. Through opportunities that might present themselves through my involvement in the YGLs, I hope to bring the issue of science and stem cell research to the attention of stakeholders who can help mobilize broad social awareness and action: people like Pope Francis and other religious leaders, heads of state, industry leaders, and scientists, themselves. The advancement of important scientific endeavors, like stem cell research which has the potential to positively impact people around the world, is a multidimensional matter and can best take place when everyone is included. In addition, I expect that my involvement in the Young Global Leaders will focus centrally on the work I have done to empower individuals and communities, and to bring to the public consciousness health-related and community-based challenges that people face that so often can go unaddressed. This is work that I neither underestimate nor take lightly. It is my hope that, through my involvement in the World Economic Forum and the Young Global Leaders, I can bring even greater attention to the circumstances people from all parts of society and all levels of ability face.
I join no small number of people when I say that Thanksgiving is my favorite holiday. This year, even more so than in many years past, I have a great deal to be introspective and reflective about. 2013 brought with it quite a bit of personal struggle and difficulty: I dealt with significant health issues at the beginning of the year, including septicemia and a superbug, and then lost my last grandparent in July. But, despite this, I approach this holiday season with tremendous humility and gratitude to all who I love and who love me. I recognize how immensely fortunate I am, and how much of a privilege I’ve been afforded to engage in the work I do.
More than anything, this year has given me the opportunity to work with people and communities who are facing circumstances of disadvantage. At least as far as I have encountered, there isn’t anything more rewarding than using whatever resources, knowledge, position of privilege, or basic compassion we have for the betterment of someone else. It’s what we’re here to do.
There’s one group of people who I think is always deserving of more of our attention, but especially this time of year, around this holiday, and 2013, in particular. Thanksgiving is a legacy built on the importance of American Indians in our country’s history. American Indians, who not only shared their wisdom and culture with those who arrived on colonial Shores looking for a new way of life, but also who have sacrificed so much and have lived in marginalized communities since then.
Yet, American Indians, even now and possibly especially now, experience some of the most profound manifestations of inequality and social struggle. I would like to share an article with you that I think captures some of their experiences, though, admittedly, no one account can effectively describe either the complexity of the issue or the nature of everyone’s lives. I hope you will read it, reflect on it, and find it possible to help if you can.
After what has been an admittedly very long hiatus, I am rekindling my blogging and sharing my thoughts with you. Why has it been so long? Well, over the past two years, I have focused my time and attention to finishing my PhD (mission accomplished in 2012) and the work, teaching, and writing that followed it. I know that, through this experience, I’ve grown intellectually, but what I think is much more important is that, over this past year, I’ve changed so much personally and emotionally, in ways that I never really expected or even envisioned before. I’m so much more honest with myself and open about my life that it’s a source of empowerment, a manifestation of confidence.
I don’t think there’s any one reason for what precipitated this change in outlook and inner strength. Maybe it’s that I have come to terms with different types of heartache in my life, because, after all, I don’t know of a single person who hasn’t grappled with heartache. Or, maybe it’s that, as I’ve gotten older, I’ve come to care far less about what people think and much more about what is right and noble. Or, maybe it’s that I’ve come to be inspired by people who made me realize that my role in their lives is something valuable and meaningful. Or, maybe it was the intersection of all of these, happening at just the right time. But, whatever the reason, I feel privileged, I feel honored, and I feel like I have a lot of talking to do.
At this point in my life, it’s hard for me to be anything other than honest and no holds barred. What’s the point of doing otherwise? By virtue of my physical situation (circumstances, disability, accident, paralysis, whatever title you want to give it), I have nothing to hide nor feel ashamed about. But, that’s just me, that’s everyone. The level of self-censorship, self-loathing, and self-shaming that so many of us place on ourselves is no antidote to the already very real social censorship, loathing, and shaming that we all feel on a daily basis and which prevents us from learning or becoming stronger people. I see this every single day through the people with whom I come in contact and the students I teach. That’s pretty terrible and pretty frightening. I think we falsely protect ourselves from accusations of weirdness by gravitating to the mean or one narrowly-measured standard deviation on either side. I think we tend to conform our vocabulary and storytelling to meet the norm because the extremes are messy and hard to handle. But, that does exactly nothing in the way of good, and that’s just not the way it is. Life is unrelenting, and this is a bullshit-free zone.
I imagine that many of you are visiting my site for the first time today, after just having watched The Brooke Ellison Story. I also imagine that this is a somewhat unusual way to get to know someone, through seeing a movie about her life. The Brooke Ellison Story first aired on television nearly 8 years ago, and even to this day, it still strikes me as odd when people tell me they have seen it. For all of us, life is not what we ever expect it to be, and the inevitable challenges that befall us are not what make us who we are. It’s the desire to overcome these challenges that does. I am not unique in this, as the existence of challenge is one of the dimensions of humanity that unites us all. I do, though, feel quite privileged in the opportunity I’ve had to share my life with you because, though challenge befalls us all, sometimes we need a little reminder about how much stronger we are than we believe ourselves to be.
There are plenty of times when I, like anyone else, experience many of the frustrations that intrude our hearts. Whether those emanate from struggles with being denied some of the opportunities that others have, from a relationship that didn’t turn out the way I had hoped or expected, or from any unanticipated turn that might be thrown in what I may have thought to be a steady path, there are times when life can seem victimizing. But, in every single one of these instances, every single time the shadows seem to be lengthening into the sunlight, I’m reminded of how truly and exceedingly fortunate I am. And, the reasons I’ve been so fortunate are a result of the challenges I’ve faced.
I can think of no greater example than the fact that you are here, visiting my website, and reading some of the things I have to say. If it weren’t for the unexpected and difficult events in my life, I would never have had the opportunity to share this life with you. If it weren’t for the heartache or sense of struggle that I have undergone, I might not have learned how we have the ability to not just live but, in fact, do incredible things despite it. And, were it not for living so close to vulnerability, I might not have come to understand compassion, strength, or love as deeply as I have.
In varying degrees, that’s the case for all of us. It doesn’t take experiences like mine to know the depth of challenge, nor does it take experiences like mine to realize that there is purpose and beauty to be found in it. If coming in contact with my story might help some reach that understanding, then I couldn’t possibly think of any greater purpose in my life. After all, I would say that the best any of us can do is live our lives as best we can, and hope that we affect some people for the better along the way.
If the Supreme Court can be believed, which is a dubious claim, for sure, it is to issue its ruling on the Affordable Care Act, or more colloquially “health care reform” or Obamacare, some time this week. I, like many others, was hoping to receive a ruling last Thursday, Friday, or today, but like so many other acts in political theater, this one is set to be staged just so, to maximize the drama. In the world of politics, we should expect nothing less, however the fact that such a critically important issue with such pervasive implications has been reduced–or elevated–to such a highly polarizing political issue is, in itself, quite troubling.
What a luxury. What a disturbingly privileged position the US Supreme Court and Congress has created for itself. The language they have used to discuss this issue, dripping of anesthetic and robot-like inhumanity, has centered on obscure parts of the commerce clause and whether it is within the US government’s constitutional jurisdiction to mandate or prohibit “activity or inactivity” like the purchase of health insurance. This seemingly cold and calculated simplification of a complex social issue was, just two years ago, nearly unthinkable and almost without precedent in US law. Yet, here we are, two years later, awaiting how the nine Justices of the Supreme Court–politically privileged in every way–sees fit to rule on the constitutionality of the Affordable Care Act.
What a luxury. What a disturbingly privileged position the US Supreme Court finds itself, to rule on the constitutionality of the provision of a good it has absolutely zero chance of ever losing. For the US Supreme Court, the issue of healthcare was never one that was in need of reform, in fact it was formed quite well. For the US Supreme Court, it has never been a matter of “finding a job with benefits”, because the benefits afforded to these nine individuals are as vast as their robes are unflattering.
I can’t claim to be an avid fan of the “individual mandate” as the cornerstone of a movement toward universalizing healthcare coverage. I think this creates a tremendous boon for the health insurance industry, when the very last thing it needs is more power or advantage. However, what I do know is what it feels like to be dependent on a healthcare system in order to get through each day. The heart of the issue is not about the commerce clause. It’s not about the individual mandate. It’s not about the unreasonable and unsubstantiated fears of “socialized medicine”. The heart of this issue is how to allow people, who through no fault or decision of their own, are facing unimaginable difficulty are not made even worse off because they can’t secure the services they need.
I can’t imagine what my life would have been like over these past 22 years if I didn’t have health care coverage. I know that many others have not been quite so fortunate. However, I have lived every day for the past 22 years under the health insurance industry’s sword of Damocles, wondering when a necessary medical supply would no longer be covered, when a necessary service would be denied, or when a procedure would be considered “beyond medical necessity”. And, that says nothing of the fears that others legitimately have of reaching an “individual cap” in coverage or the inhumanity of the inability to take a job because it doesn’t provide adequate health insurance, or worse yet, the denial altogether of insurance coverage because life has already treated you unkindly with the onset of disease or disability. If the individual mandate was the only way, in the political world in which we live, that the health insurance industry would agree to alleviate some of these fears, then it seems quite worth the undertaking.
Irrespective of how the Supreme Court rules on this matter this week, the upholding or overturn of healthcare reform will say nothing of the divide between what many people need, and what many others believe they are entitled to. For many people, healthcare is not a talking point or a matter of political theater. It is the very issue on which their lives depend. They come from all backgrounds, all ethnicities, all ages, and all political ideologies. If the possibility that healthcare coverage is beyond the financial reach of some, or the medical eligibility of others, does not demand a need for reform, then the US Supreme Court has managed the unlikely feat of making itself even more distant from public realities.
Todd Leatherman and I met about a year and a half ago, when he was conducting research for a documentary on stem cell research: a documentary he was filming for this thesis at the New York Film Academy. Todd is a documentarian who, like so many other documentarians, wants to use his creativity behind the camera to help change the world in front of the camera. In the time that Todd and I have gotten to know each other, I have found a gift, not only in his storytelling but, much more importantly, in his friendship.
One of Todd’s films, The Sacred Cells, is going to be screened at the Manhattan Film Festival on Sunday, June 24, at 7 PM. If you are interested in the stem cell field, or if you are simply a fan of good films, I highly encourage you to attend if you can. Information about obtaining tickets can be found here:
If I have said these words once, I’ve said them 100 times, that I am who I am because of the people who have entered my life and made it better. Every single day, I am inspired and motivated by my friends and family, all of whom give me a sense of purpose and give my life meaning. I can say without equivocation that, were it not for my friends and family, I really don’t know where I would be today, as my success in life is attributable to them as much as it is attributable to me. I would be disingenuous if I ever were to think otherwise.
Much like everyone else, I had friends who have stood by my side throughout all sorts of heartache and all sorts of glory, as well as friends who have come and gone. I suppose that’s the nature of the enterprise, some with a longer shelf life than others. But, at any given time, the people in my life are my heroes, when heroism can often be in short supply.
Jake Incao is a musician from Long Island. We met seven years ago, when Jake was opening for Huey Lewis And The News at a local concert. As happens with many friendships, ours grew unexpectedly, starting with an e-mail exchange over common musical interests. Over these past seven years, though, Jake has been a part of so many of the pivotal events in my life, performing at one of my New York State Senate fundraisers, writing and recording “Hold On” for the documentary, Hope Deferred, and epitomizing a sensitive soul in a sometimes hardened world. In fact, Jake is one of the most special people I could hope to meet.
This week, Jake released a song on iTunes and YouTube, “Mind Wide Open”, which is highly worth checking out. You can find it here.
Mind Wide Open
There were very few people who ever get the privileged opportunity to change the understanding of possibility or the strength of the human spirit. My dear friend, Christopher Reeve, was one of these people. There probably aren’t many who might consider Chris’ years living with paralysis as a “privilege”, but there might not be any greater legacy any of us can hope to leave on this planet than one of perseverance and grace in the face of struggle. Chris was, and continues to be, a source of guidance for me, and one whose path I hope to continue to forge.
But, irrespective of this, there was a man beneath the cape, beyond the wheelchair: a father whose courage was only superseded by his love for his family. In June’s issue of Glamour magazine, Chris’s daughter, Alexandra, paid a beautiful tribute to her father. I’m sharing the PDF here. Chris was a hero to many, for sure, but I think he was also an epitome of what it means to be human, learning to balance our inherent vulnerabilities with our tested courage. We all will face the former, many of us will draw upon the latter, and some of us will come to realize that there is beauty to be found in both.
The following commercials were produced entirely by Brooke Ellison’s students at Stonybrook University.
From Library Journal
At age 11, Brooke Ellison was left paralyzed from the neck down after being hit by an automobile. Writing together in alternating chapters, Brooke and her mother, Jean, document the exhausting efforts and dedication that it took for Brooke to beat overwhelming physical odds and finally graduate, with honors, from Harvard University. The story begins on the day of the accident and ends triumphantly with Brooke’s graduation speech from college. Brooke’s upbeat account of her college experience reveals her charming and witty nature, and Jean’s contribution is a testimony to the profound powers of a mother’s love and unfailing dedication. Although many other biographies of quadriplegics are available, this one, written with keen intellect and an open heart, deserves attention. It is recommended for both public and school libraries seeking nonfiction that provides strong role models for adolescents. Academic libraries supporting a curriculum in the health sciences might also find this suitable. Deborah Anne Broocker, Georgia Perimeter Coll., Dunwoody
Copyright 2001 Reed Business Information, Inc.