Mark McAllister is a twenty-year-old man with Spinal Muscular Atrophy (SMA), a rare condition that causes the degeneration of motor neurons and the weakening and wasting away of muscle. In a wheelchair since age 3, McAllister is fighting the inevitability of his death: victims of SMA do not live much past 30 years of age. His fight is as epic as any told in human literature, but as personal as the questions each of us ask about the nature of our existence.There are the usual hopes for a medical breakthrough that will spare McAllister further deterioration in health. The effectiveness of using valproic acid and carnitine to treat SMA in children is currently in phase II clinical trial. “The results of the study won’t come for a while yet,” says McAllister, “but it looks more like a treatment than an actual cure.” Research into other genetic diseases and human genome research in general also provide promising avenues to discoveries that might have some bearing on SMA.
The question is, will treatments become available soon enough to extend McAllister’s life just a little bit longer, leading up to that wonderful day when SMA is cured forever? The prospects are improving, but McAllister understands the reality. “The push for a cure waxes and wanes depending on the funding available at the time.”
At age 16, McAllister learned just how fast his physical abilities could deteriorate. “I’ve always been in a wheelchair, but up to that point I had adequate use of both my arms, At this time, however, my left arm began weakening. The degeneration was alarming, and within a year and a half I had completely lost the use of that arm. This was the first event in a series that would ultimately leave me frailer than I had been before. It was at this time that my mortality became very apparent to me.”
Humans, regardless of their preexisting conditions, face a period near the end of their life when their body rapidly begins to fail them. Though it might seem a lot worse to live only 30 years with already limited physical abilities before dying, to some people of reasonable health, death at any age is a horrifying prospect.
McAllister discovered people with this view of death while exploring the philosophy of transhumanism. Horror of the finality of death has lead some to embrace this philosophy and its exploration of alternatives to oblivion or a supernatural afterlife. While a majority of people continue to believe that death is simply a natural part of a larger cycle involving birth and existence, transhumanists hope to overturn such thinking by showing that humans can, through science and technology, obtain physical immortality.
McAllister provides reasons why physical immortality could be positive. “First off, we live in a fast paced society that focuses on immediate gratification. This doesn’t provide a person much of a chance to explore their potential. In a world inhabited by immortals, we could see the rebirth of the ‘Renaissance Man’, with individuals mastering several disciplines. Second, immortality provides for the best chance at societal growth. For all intents and purposes we hit the reboot button with each generation. Sure, society does evolve over time, but every generation basically starts with a blank slate. Image what would happen if we had leaders with centuries of wisdom and experience. Society would grow,learning from mistakes experienced on its own instead of learning from history texts.”
Recent scientific research indicates we might be heading rapidly toward just such a world. Unfortunately, for many with preexisting conditions, this progress might not come soon enough. The plight of actor Christopher Reeve, who suffered an accident that left him without the use of his body below his neck and who became an outspoken advocate for cutting-edge medical research, comes immediately to mind. He remained hopeful for a breakthrough within his lifetime, but he did not live to see the announcement by South Korean scientists late last year that they had used adult stem cells to allow Hwang Mi-Soon at 37 years of age to walk again after 20 years of paralysis.
What does one do when future treatments and cures are tantalizing out of reach and every day is a race against time? To transhumanists and other technology progressives, cryonics offers one possible solution. Cryonics is a speculative technology used to freeze or vitrify the human body after clinical death for indefinite storage. If the body can be vitrified soon after death – thereby halting or slowing down significantly the process of decay – then maybe it can be held in indefinite stasis until future technology has progressed far enough to cure, repair and revive the individual. Although those few people who have paid for cryonics plans generally agree that the chance of their resurrection is low, they feel it is a fair gamble. After all, once they are clinically dead, they have nothing else to lose, and everything to gain should their slim hopes be realized.
Alcor and the Cryonics Institute, the two primary facilities for cryonics in this country, allow members to use a life insurance policy as payment, along with annual fees. Upon clinical death, the member’s insurance policy is signed over to the cryonics facility. For many people, this is their only option, as full-body internment at cryonics containment facilities can cost as much as US$100,000, before annual fees are added in. A neuropreservation plan that retain only the head and brain still costs up to US$80,000.
Some people cannot get enough insurance to cover the cost of cryonics preservation. McAllister is an example, a person with a preexisting condition not covered by most life insurance plans. Any life insurance policy he might qualify for will come with particular limitations and may not be large enough in value to cover the cryonics costs. Without a life insurance policy of sufficient value, McAllister must raise the money to pay for this service upfront.
Enter the 2.0 Project.
Conceived by McAllister while reflecting on his options after not winning a lottery, the 2.0 Project serves dual purposes. The first is to raise enough money to let McAllister sign up for a cryonics plan, and the other is to raise awareness about transhumanism, physical immortality, and the plight of the uninsured and uninsurable in a world of rapid life extension. McAllister argues that ultimately “the 2.0 project isn’t about me, it’s about life.”
The 2.0 Projects hopes to raise US$130,000 to cover Mark’s neuropreservation at Alcor as well as other expenses including the cost to move near their facility in Scottsdale, Arizona, USA, from his current residence in Canada, and living and medical care costs should Mark’s health take a drastic turn for the worst. To date, with a mix of donations and McAllister’s own personal financial contributions, the 2.0 Project has raised US$443.06 on word of mouth alone.
McAllister is also trying to build a team of graphic, industrial, environment, interior and other designers and artists to help turn the 2.0 Project into “a giant communications project.” McAllister’s own work in graphic design has been supported by the use of technology to augment physical abilities limited by SMA. “Computers have been a blessing for me,” he explains, “and I wouldn’t be in this line of work without them. My drawing skills can be a bit sketchy (no pun intended) at times, but I still have enough strength in my right arm to carry out my job.” Knowing through his work the potential impact of design on society, politics and individuals, McAllister and his team will create a visual language for disseminating and leading discussion about technology progressive ideas.
Because the 2.0 Project is informed by transhumanism, it faces its own obstacle of image. There is already a growing backlash against technology progressive philosophies, led by some of the leading bioethicists in the United States, in addition to religious and conservative interests. When Foreign Policy asked invited writers in its September-October 2004 issue what they believed the world’s most dangerous ideas were, Francis Fukuyama, a member of The President’s Council on Bioethics, Professor of International Political Economy at Johns Hopkins University’s Paul H. Nitze School of Advanced International Studies, and author of several books critical of future progress, responded that it was transhumanism. The coming transformation of modern humans into transhumans with enhanced abilities enabled by science and technology led Fukuyama to wonder “what rights will these enhanced creatures claim, and what rights will they possess when compared to those left behind?”
When asked about possible criticism leveled at the 2.0 Project, McAllister states that “[d]eath is a major concern for everyone on this planet, whether they like to admit it or not. Every world religion has come up with its own answer to death. In fact, I believe that at the core of all religious belief lies the fear of death. So really, seeking immortality through science is no different than seeking it through spiritual means. The only hitch is when people can’t see past their own paradigm. I understand those who would feel adversely towards the 2.0 Project, and I respect their viewpoint. It’s impossible to get everyone to agree on something (especially the concept of death), so room must be made for different beliefs and opinions.”
The pursuit of immortality through supernatural and mystical means, our myths of eternal human-like gods, the latest diet craze, Botox – each is another way that humans try to hold on to their existence just a little bit longer, a desire that is at least as old as recorded human history. But the idea that there is no set limit to human lifespan is as new as the breakthroughs being reported in the scientific literature on a nearly daily basis. Biology tells no lies, but it tells a difficult truth. With each result, we are forced to rethink what we thought we knew about our existence and destiny.
When the research stopped being speculative and began to produce measurable results, critics that had previously called the entire endeavor “science fiction” and a waste of time and money immediately began calling for limits and outright bans, culminating with suggestion by Leon Kass, another member of the President’s Council on Bioethics, and others that people who live too long might need to be euthanized for the sake of society, regardless of their level of health. A rapidly growing population of centenarians, many of them now in their eleventh decade, might argue otherwise.
Through the 2.0 Project, McAllister hopes to encourage further discussion about these issues within the transhumanist movement and beyond. He says that he does “consider myself a transhumanist, but I use futurist to describe myself just as often. I’m not one who cares much for labels, and futurist is a bit more generalistic. I do, however, use transhumanist on the website for the simple fact that I consider myself a transhuman. I’m an individual in transition, whose ultimate goal is posthumanity (whatever that turns out to be). Whatever form it may take in the coming years, I believe this to be the core of transhumanism. All other facets are negotiable.”
It is this human face on topics unfamiliar to most of the public and frightening to critics that may be the 2.0 Projects strongest asset. McAllister dreams find flight beyond a cure for SMA and a rejuvenated body. He envisions a bright future of possibilities available to everyone, regardless of their current status.
“Transhumanism is an optimistic philosophy. Likewise, the 2.0 Project is an optimistic mission. My philosophy is based largely around transhumanism, thus the project is based largely around transhumanism. I don’t want this to sound like it’s just for technophiles though. Above all else, the project is about life. I’m hoping that this will appeal to people of various philosophies.”