For All Humandkind:
Taking The Genetic Bill of Rights to New Heights
by Evan Lerner

 

1) All people have the right to preservation of the earth’s biological and genetic diversity.

First, let me thank you for speaking with me today. We at GeneWatch and the Council for Responsible Genetics obviously hold the Genetic Bill of Rights very dear, so it was with great pleasure that we learned about these paintings. Before we start discussing the paintings, however, I’d like to know a little more about the artists responsible for them.

C.C.: My name is C.C. Arshagra and I was born the child of two artists, Rosemarie, a world-class professional vocalist, and Joseph D. Cistulli, a professional big band musician in New Britain, Connecticut. Both were great inspirations to me in the realm of the arts, but it was my grandfather, whose first name was Arshag, who influenced me most in terms of actually becoming an artist. I adopted the name “Arshagra” as an original surname after him, and my initials (C.C.) as my first name.

I got into the arts at a key time, right as public access cable television was getting started. Through my experiences there, I saw how a handful of people could come together and really make a difference in the world of communication. At that time, there was a communications monopoly by the Times-Mirror in Hartford, Connecticut. This same company owned the one major state newspaper, the one cable TV company, as well as the one National Broadcasting Company television affiliate. But despite our tiny staff and shoestring budget, we at this cable access station were able to make enough noise to draw the attention of one other television network, based in New Haven, Connecticut, to the monopoly situation in Hartford. Through their coverage, we were able to bring this illegal monopoly before a national hearing, where it was forced to divest one of its three holdings.
I am very interested in communication of all sorts, especially working with the public. But it was really the two decades in public poetry and improvisational movement-arts scenes in New England and New York City that has shaped me into the communication arts activist that I am.

Mariam: My name is Mariam Muradian, and I was also born the child of two artists, a concert pianist and a cellist. But they later went on to use the other halves of their brains. My mother, after the age of 50, was a scientist and one of the leading AIDS researchers in this country, and my father was a brilliant mathematician and composer. They encouraged me to develop my artistic gifts and even set up a gallery for me in our home when I was not yet 2 years old; so it was clear that I was meant for a life in the arts at an early age. I’m a formally trained as an artist, an alumna of The School of the Art Institute of Chicago, but my Masters is in Educational Leadership: Instructional Technology Systems Design. I have studied at length in the fields of highly creative problem-solving, virtual realities, industrial psychology, cognitive science, and human-computer interface.

2) All people have the right to a world in which living organisms cannot be patented, including human beings, animals, plants, microorganisms and all their parts. 3) All people have the right to a food supply that has not been genetically engineered.

Give me the story of how these paintings came into existence. How did you learn about the Council for Responsible Genetics and the Genetic Bill of Rights? What sparked your interest in expressing these concepts artistically?

C.C.: As I said, I was extremely active in public poetry In Boston, specifically Cambridge, for a number of years. I believe the job of the poet is to say the unsaid or what is impossible to say, either because it is ineffable, or because it is something that everyone feels deep down but cannot or will not express it out of fear. I was at a point where I was disgruntled with the egos and self-importance in the Cambridge poetry scene when I heard about the Biodevestation Rally in 2000. I spent the next three days learning about the issues involved and meeting some of the key players in the field, including Ralph Nader and Vandana Shiva; it changed my life. I ended up performing some of my poetry on the third day, and when I stepped off stage I met Martha Herbert of the Council for Responsible Genetics. The next day, when I saw the text of The Genetic Bill of Rights in the Boston Globe, I started what would become a seven-year mission of trying to get the word out.

Later, after seeing a show of political art at the Zeitgeist Gallery, I thought that might be a way of doing it. I immediately went out and bought a canvas, painted it black, cut out a giant “1” and the shape of a protester and put the words of the first article within the 1. That canvas sat there for years until I met Mariam and realized she could take the story from there. But it was so important to me that I asked her “Are you sure you understand what you’re getting into? You can’t do this because you love me or want to support me. Your life is a rare one and your life sustaining technology makes your voice unique — this has to come from you!”

Mariam: I immediately knew how important it was to paint the Genetic Bill of Rights when C.C. introduced the idea to me; I was uniquely qualified in that I have dealt with a rare metabolic disease my entire life. I am 100% dependent on a multi-lead permanent pacemaker; I am a cyborg and thus I have been living these precepts my entire life. When you see the Genetic Bill of Rights, you realize that these rights come down to the individual, because if you don’t have control of your body, you can’t master anything outside yourself. We all interface with technology at different levels. Individually, whether the circumstance is deciding on medical care or enhancement, life or death, the food we eat, or simply how to survive while living in a developing country, we each must grow into a level of accountability where we can assert our rights in regards to those choices. If you don’t know that such rights exist, you’re not going to be able to make a choice when you’re confronted with that technology, on whatever level. I consider this series my most significant artistic and social achievement. As technology progresses and these rights are violated, I am going to be standing right in the middle of those two worlds, and I have something to say about it.

 

4) All indigenous peoples have the right to manage their own biological resources, to preserve their traditional knowledge, and to protect these from expropriation and biopiracy by scientific, corporate or government interests. 5) All people have the right to protection from toxins, other contaminants, or actions that can harm their genetic makeup and that of their offspring.

Prior to working on this project, how familiar were you with the kinds of issues the Genetic Bill of Rights touches on?

C.C.: Prior to the Biodevestation Rally, I was almost completely ignorant. If I touched on issues relating to biotechnology, it was from the perspective of a communications artist. When information exists and the public cannot access it, my place is to ask questions; I have a profound interest in the dissemination of information, including disinformation and propaganda.

Mariam: When I lived in Mexico, I was a director in an international alternative hospital and rural clinic. I dealt a lot with workers’ rights, labor unions, migrant workers, and the families of los desaparecidos [the disappeared]. I can attest first-hand to indigenous remedies, traditions, and belief systems that should be valued and admired, not exploited. I’ve also run a business called “With You Always,” in which I helped document life stories of the terminally ill. C.C. and I have done that in our own lives, too. Both of our grandfathers came to the U.S. from Armenia, escaping the genocide, and we both documented those experiences. Human beings have been consumed with the idea of ownership and have forgotten gratitude.

 

6) All people have the right to protection against eugenic measures such as forced sterilization or mandatory screening aimed at aborting or manipulating selected embryos or fetuses. 7) All people have the right to genetic privacy including the right to prevent the taking or storing of bodily samples for genetic information without their voluntary informed consent.

Do some of the rights speak to you more directly than others? Which of them do you see as being the most important, and which are in the most danger of being violated right now?

Mariam: I was really shocked when, as I painted each canvas, I realized how vital these rights are to the future existence of the human race. But you go down the list and say “That’s been violated, that’s been violated…” it just astounded me. They’re all important, but if I had to pick one that really resonates with me, it would be number 8: “All people have the right to be free from genetic discrimination.” I see a world coming in which I am going to be caught in the middle between human rights and technology, biotechnological haves and have-nots. Cyborgs may one day be deemed inferior or superior by human society. Maybe I can be a peacemaker between the two, or at least a voice, but I do think we will have to deal with discrimination based on that conflict in the near future.

In the middle of the painting of this series, I went through another serious transformation that emphasized the tension in biotechnology even further. I was given a drug for my heart, which worked amazingly well. But I had to deal with the side effects, which included the loss of my vision. By the time I got to number 8, this blindness had really begun to escalate. My color vision was completely gone as I painted numbers 9 and 10. Number 11 [which appears on this issue’s cover] was done mostly blindfolded, as what little sight I had left was unreliable.

This was a traumatic time for me, and at times I wondered whether I should continue. But it was important for me to finish these paintings. I deal with issues of biological obsolescence every day. I have had thirteen heart surgeries so far, and I get about five years out of each pacemaker. And each time I get them replaced, they are new and improved, with all sorts of bells and whistles. My cardiologist said, right before putting the latest one in, that it was “so easy, a monkey could do it.” These words were somewhat disconcerting to me, so that’s why that phrase appears in the final painting.

C.C.: I have an affinity for Native American and indigenous peoples issues; Mariam and I live on the Port Madison Reservation in Suquamish, Washington. I’ve seen the need for number 4: “All indigenous peoples have the right to manage their own biological resources, to preserve their traditional knowledge, and to protect these from expropriation and biopiracy by scientific, corporate or government interest,” from both sides now, as I used to live right by MIT, and I remember the students rushing to get genetic patents. I was very disturbed when I heard about how scientists were going into the indigenous cultures of the world, trying to get such patents. I was also very disturbed about stories coming from India about farmers committing suicide in response to the growing presence of biotechnological agribusiness there, and similar stories about the U’wa people in South America. And these stories rarely ever made it into the news. If they did, they were always presented alongside someone giving the “right” perspective, which turned the debate into a “left versus right,” “liberal versus conservative” thing. But you can’t oversimplify human beings, our air, our water, and the responsibility and accountability to planet Earth into “left” and “right.”

Food, of course, is also a big issue to me. I can’t go into a supermarket and find out what is genetically modified or not, so I definitely see the need for something like number 3: “All people have the right to a food supply that has not been genetically engineered.” I speak to my friends in Europe and it’s an entirely different situation for them; they demand to know what foods are modified and they have that right. Over here, we have 800 television channels, but that kind of information is simply not getting out there.

8) All people have the right to be free from genetic discrimination. 9) All people have the right to DNA tests to defend themselves in criminal proceedings.

How do we get that information out there? The people who violate these rights generally aren’t doing so out of malice, but rather that they simply don’t recognize that genetic information is something that needs to be protected in that way. What channels of communication can we use to convince them otherwise? Or should we think of the Genetic Bill of Rights as a way of tying many related topics together for people who are already on board?

C.C.: The idea that the Genetic Bill of Rights needs to get out to only likeminded people is something we need to move beyond. We can’t be preaching to the choir — we need to reach common ground and break down this left versus right dynamic, as this is not a left versus right issue. This is not a race issue. And ultimately, this is not even a class issue. The Genetic Bill of Rights is for all humankind.

Mariam: I totally agree with what C.C. is saying about the left versus right dynamic. I love his ability to see the big picture. But my approach is more grassroots; the question to ask is “Whose rights will be first exploited?” That answer determines who we should be sharing this information with first.

C.C.: As soon as you divide an issue, you diminish your chances of being heard. I am interested in future of slavery —whether it is imposed on others or on ourselves — genocides, and holocausts. The Genetic Bill of Rights is really about those things. But it will be a new kind of slavery, one that is primarily concerned with the control of the planet’s resources and subjecting previously natural processes to business models.

Mariam: I think this idea of genetic discrimination is the forerunner of these things. As I said, I have dealt with related issues my entire life.

 

10) All people have the right to have been conceived, gestated, and born without genetic manipulation.

What’s next for these paintings?

C.C.: After seven years of these canvases sitting blank, I met Mariam and we were finally able to get The Genetic Bill of Rights onto them. We can’t just let them continue to sit. Working as an activist and artists, I had some contacts in the film and music world, and the idea to make this a multimedia project occurred to me. At an art show, maybe 30 people would see these paintings, so I photographed all of the canvases and started turning it into a film, with some music that I recorded. I sent it to the Boston Underground Film Festival, and created a 10-part version with an introduction by myself, asking the question “‘Who will respond with integrity?” These videos can be seen on my website, www.ccapoet.com and on www.YouTube.com/ccapoet.

I would love to see the film and Internet video project be remade and re-launched worldwide. Perhaps it could be turned into a student project, involving many film and music schools all over the planet. This way, these young filmmakers and score composers will be exposed to the art of voicing the science of humanity’s future. Basically, I want to put this project in the ground and watch it grow for humanity in any and every direction; the possibilities are endless as diversity itself.

Mariam: I trust the paintings will fulfill their purpose in the world. I hope people are curious and receptive and will take these words to heart.

Evan Lerner is the Director of Communications of the Council for Responsible Genetics and the editor of GeneWatch.