Steven Spielberg wants hospitalized kids to score touch downs, venture through secret doors, slide down rainbows and rummage around mysterious caves all while still in the hospital! And soon they’ll be able to with Starbright World, a unique project now under development that connects kids via computer in a remarkable way.
Now kicking off a three-year test. Starbright World allows children in different hospitals to play together, by way of phone-linked computers, in a host of imaginative, scenic 3-D “worlds.” On-screen, each kid is represented by an ani mated character, called an “avatar,” that runs, jumps, plays games takes part in all sorts of activities. just like kids do when they’re not stuck in a sick bed. If they want to. children can also switch on video cameras and talk “face to face.”
Film director Spielberg, who heads Amblin Entertainment, is spearheading the project. He said Starbright’s goal is to replace hospitalized children’s existing, limited view, with “a looking glass to a whole new world. They can escape from their pain…to a place where they can make anything happen. They are in control.”
The network-being tested, as of November 8, at Lucile Salter Packard Children’s Hospital at Stanford, in Palo Alto, California; Children’s Hospital of Pittsburgh, in Pennsylvania: Children’s Hospital of Boston, Massachusetts; and The Mount Sinai Medical Center, New York City (and, possibly, Children’s National Medical Center, Washington, D.C.)-serves as a “virtual” space (as in “virtual reality”) In effect, it’s a playground inside a computer, and kids at the above mentioned hospitals will all be able to communicate and play together,
It’s an ambitious project of the non-profit umbrella organization The Starbright Foundation, a sister program to the Starlight Foundation which grants wishes and provides entertainment to 250,000 sick children annually.
Now comes Starbright, which aims to use interactive entertainment therapy to help distract and empower kids who are critically, chronically. and terminally ill. Four corporations are contributing leading-edge technology to create the network with a total investment of almost $10 million. They are: Sprint International, Intel Corp.. Worlds Inc., and UB Networks.
In June, Steven Spielberg, Starbright’s chairperson, hosted the first public demonstration of the pediatric network. He was in Los Angeles-the kids he hooked up with were 400 miles away at Lucile Salter Packard Children’s Hospital at Stanford.
Spielberg’s avatar? E.T., of course, the famed movie character the director calls “a self-portrait.” Lee Rosenberg, chief of the Starbright World project, introduced Spielberg as “the real Wizard of Oz”
One kid he talked with was Mark Fields, who has leukemia. Later, the 16-year-old said. “I wish Starbright World had been around when I first found out I had cancer. I think it will be really cool to talk to some kid in Boston who’s going through what I’m going through I could say, ‘Hey, I’ve been there- and it does get better. Look at me now”
Already, over 150 Starbright avatars have been designed, but children will be able to create their own. too. They can even make ones with photos or combine their faces with the body of a fish, or other animal…
Starbright was started by British film producer Peter Samuelson and boasts a board of directors that includes top executives from companies such as Apple Computer, Coca- Cola, MCA and Walt Disney Studios, as well as institutions like USC’s Department of Medicine. Others involved include Cedars Sinai Medical Center, Children’s Hospital, Los Angeles, Fox Children’s Network, Columbia Pictures, actress Emma Samms and UCLA Medical Center. Starbright World will be a research tool to study the effects of its innovative entertainment therapy on children in hospitals. “All my life, kids have been my boss.” said Spielberg. “They tell me what they need when they need it…Starbright is dedicated to improving the quality of every- day life and finding ways to give (hospitalized kids) back their child- hood.” The network is designed to be used for all ages-toddlers to teens.
At last summer’s presentation. Spielberg also chatted with 13-year- old Vanessa, who has cancer-represented on-screen by a fish-and Megan. 10, who has leukemia. He spoke of plans for a wide array of virtual worlds, like Skyworld, where kids can dance among the clouds, and Caveworld: “You’ll be able to explore caves and collect things. then bring them out to another world,” he said. “We’re designing secret passageways, trapdoors and mazes to play hide-and-seek in. We’ll create a town where kids can go toy shopping together. We’re building a football field, a baseball field, and we’ll be able to organize team sports like volleyball. We’ll have a rainbow slide and a pond that becomes a secret door to another adventure,” said Spielberg.
With the “Vid Grid,” children can view music videos and movies together. “You can have a shared experience of everyone watching the same thing at the same time.” Spielberg added.
“Starbright,” says Spielberg, “will be a way for hundreds of kids to play together every day and then communicate beyond that: they can pick up the phone and call each other and become real good friends.”
ABILITY talked at length with three members of the Starbright Board: Lee Rosenberg, Senior Vice President, William Morris Agency; Peter Samuelson, Partner, Samuelson Productions; Alan J. Brightman, Ph.D., Manager, Worldwide Disability Solutions Group. Apple Computer, Inc.
JR: How did you get involved in Starbright World?
LR: A former CEO of Starbright asked me to attend a board meeting. There was much talk of how Starbright’s mission could be carried out, but there was no significant project in the organization at the time because it was relatively new. I said that the best way was to take the bull by the horns and do what never was done before-bring three disciplines together: medicine, high technology new media and the Hollywood community. Anecdotal evidence indicated that children who had minimal distractions-game playing, so forth-had a significant. 60 to 80%. lower demand for pain medication (than those with none). We wanted to try to invent things that enhanced that distraction. We call them entertainment intervention products.
JR: What did you arrange?
LR: I threw together 175 people, equal parts from high technology and media development groups, doctors and the Hollywood community, at a luncheon about eighteen months ago so they could acquaint themselves with each other and their products. Medical challenges were thrown to the tables and a brain- storming session ensued. It was quite extraordinary to see these people who think differently, work differently and have different products come together in a constructive and very creative way. We came out with 25 or so proposed initiatives. We did a feasibility study on them. reducing them to about 11 or 12 and are now under way with that group. which includes sleep-induction therapy learning. Children who are in pain or great anxiety cannot get to sleep. So we have a project to teach them how to sleep, to get themselves to sleep “pain-away” therapy intervention, which teaches them how to deal with their pain. quite an extraordinary undertaking.
JR: What came out of the luncheon?
LR: One of the projects that is particularly dear to my heart, which we then called the On-Line Project: Starbright World. We are taking bedridden kids, kids who have lost control of their lives through disabilities brought on by disease and so on, kids who have been differentiated from their siblings and peers by those physical disadvantages, and enabling them to enter worlds of fantasy or imagination with others who are similarly disadvantaged, and play, communicate and stimulate each other. In other words, the idea is to give them control over an arena of experience which is close to, but not the reality of. their lives.
JR: What is your time frame?
LR: By November 8th we’ll have the first phase of the three-year Beta test in motion. What we are under taking is a broadband network, the only one of its kind on the planet of its size and ilk. It will be capable of three-dimensional point-to-point, point-to-multipoint voice communication and, as well. video conferencing, which will enable the kids to go into these virtual worlds, see each other as what we call “avatars”-fanciful figures that they choose to rep resent themselves, walk and wave and talk-in the virtual worlds. If they choose to contact each other directly, they can, in effect, dial each other up and in reality see each other through the video conferencing capability and evolve relationships more directly. It will be completely voice and video capable. In the world of that computer screen not only will they be able to sail between the three virtual worlds and talk to each other and see each other, they will also have accessible to them a variety of other distractive activities.
JR: Such as?
LR: The children’s cable service. Nickelodeon, has committed to us we should have it up in October-a virtual audience, where we will have our kids virtually-i.e., on monitors in the audience of live shows that Nickelodeon will do. The children in the live audience, the MCs, the performers, can see and talk to our kids as our kids can see and talk to them. We’ll have virtual field trips, where our kids can accompany, in a virtual sense, their parents, sib lings, and friends to the park. Disneyland, the bottom of the ocean with the Carnegie-Mellon research team. In other words, it’s a full connectivity to the rest of the world. There will be other access to a large variety of games and interactive play structures.
JR: Is this a first?
LR: Yes. It’s something that’s never been done before. It’s something that the larger corporations in our industrial society, like Time Warner. Viacom, have endeavored to do but have failed to do. We got it up…within 18 months and Sprint has contributed the broadband capacity lines across the nation. We’ll also be including foreign children these are probabilities at the moment, not actualities-in the United Kingdom, Holland, Israel. We’re talking with facilities in all those countries.
JR: Was Steven Spielberg at that original luncheon?
JR: Did you bring him in?
LR: No. Steven had become aware of the anecdotal research that had been done that indicated the reduction of pain-medication requirements. But, basically, there was no beef between the bread at the time I was introduced to it. It was still an idea, although some contributions had been made, like Coca-Cola and so forth, to bring it forward. We are very fortunate to have taken a vision and induced heavy, deep-pocket industrial players to participate and hook into it-Intel, Sprint, Coca Cola, Eli Lily, and a variety of companies which are increasing in number daily. And more recently General Norman Schwarzkopf has come aboard as our campaign chairman.
JR: How did that come about? LR: We needed someone who was significant and who had the ability. dedication and respect of the community. It just seemed a dead-on logical choice: here was a successful soldier, a very philanthropic guy who could lead a battle against isolation and loneliness. He himself witnessed, I believe, a relative, a young child who was felled by a disease. isolated in the hospital. It just clicked with him. So when we debated the possibilities of a handful of test candidates, others as well as myself took strong advocacy of the General. He was then approached and said okay. JR: Will Candice Bergen be more visible in this project?
LR: I’m sure she will. She’s Sprint’s spokesman, and Sprint is one of our partners in this. So I’m sure she will be at some point.
JR: Do you have any personal reasons for getting involved?
LR: Yes, I do. I believe that we take too much and give too little. 1 believe that it manifests in all of our behavior in society today, and personal responsibility for the community is extremely important. My wife and I have been, for 35 years, leaders in local philanthropy. But I’m not just talking about money. I’m interested in those pro-active volunteer aspects of community work. Not only because they give you a great deal of gratification and you are in contact with people who are benefiting but because it can be very creative. We are entering a knowledge based age of society, which is very dangerous for certain people who either have not been educated or are uneducable in the utilization of these tools. They will be left behind. So it is of interest to me to not only help kids with technology but to generate an awareness among the technologists and the governmental community that we have to use technology for pro-social purposes while we’re generating profit. There’s a scary balance between the two: profit and pro-social behavior. It’s an ethical issue, and it has to be debated continually. It has to be an ongoing consciousness-raising the responsibility of everybody. So here is a grand opportunity to put my surfboard on the curl of the wave of rising interest in, and tremendously accelerated evolution of, technology and do what I can to bring it together-to ride that wave and use that momentum to gather people in all sectors of the community-financial, techno logical, and the governmental regulatory agencies-to combine to create initiatives for pro-social use of technology. It’s a full circle and a very gratifying one.
JR: Have you had personal experience with a child in the hospital?
LR: Yes, my daughter was close to death for a month in a hospital as a result of an accident. Watching innocence crushed by needles and knives and the personality of the hospital environment, and having me and my wife’s insides ripped out daily for 30 consecutive days was not a lot of fun. So I’m very aware of how this can effect people.
JR: But your daughter is fine now?
JR: How long ago was this?
LR: When she was 16. She is now 30.
JR: Do you have a degree in psychology?
LR: I’m a history and lit. major from New York. My background is East Coast preppy, Harvard.
JR: You are with William Morris. Do you represent any stars?
LR: Yes, I’ve been in the agency business for 30-odd years. I’ve founded two companies. Most recently, one that was a competitor of William Morris, Triad Artists. which I sold to them about three years ago. Now I’m functioning in their organization and I represent people across the spectrum in entertainment-motion pictures and television, directors, writers, producers and a few actors.
JR: You are so well versed in technology. Is this something you dealt with before, or did you just learn about it?
LR: You learn every minute that you do something in this area. But I’m interested in mechanical things. I had become obsessed with the experience of online communication and did a study of it over the last several years before I started the Starbright World network because the social phenomenon of on-line communication is exquisite, stimulating, dangerous, refreshing. It’s particularly interesting because of its anonymity. It enables people who are otherwise unable to communicate when they are in the physical presence of others to become poets and very, very creative. You see expressions of their souls in text on the screen. It’s quite a moving experience. So I had become very intrigued with that and continue to be. We’re running two forms of research in the Beta phase. so it will be quite fascinating.
JR: Is there anything you can tell me now about the children’s reactions?
LR: No, it’s much too early. JR: We’ve just been doing tests of the equipment and the kids have been schmoozing with each other. We’ll have about a 3-month debugging period from November forward before we can really say we are up and running and then incrementally we’ll be adding and subtracting, altering and modifying and doing all the things that tests are about to make it work right. There will also be telemedicine initiative. a Starbright is going to sponsor a very aggressive, high-profile initiative in that area next year.
JR: Telemedicine is what?
LR: Let me give you an image: Voice and video communication with your physician-you’re in Germany and your physician is in Chicago. If you cut your finger, you hold it up. He looks at it and says, “Wrap a towel around it and go home.” Or, he’s a surgeon and has to perform surgery that is new and advanced that has been developed in a hospital in Tel Aviv. He contacts the creators of that technique. They see and talk to each other, and a 3-dimensional virtual rotating image of the surgical procedure is manifested on the screen while they discuss it.
JR: ‘Ever been done?
LR: Little initiatives here and there. Imagine a data base of tens of mil lions of people. Imagine a patient who has been stabbed X number of times. He’s 36-1/2-year-old black male, 6’1″, etc. And of the 10-million patient profiles in the database, there are 26,000 identical within age group, ethnicity, blood type, and so on. A physician looks at that and then at prescriptive norms and sees what worked and didn’t work. Imagine hip replacement: Surgery on the East Coast costs roughly 24% more than it does on the West Coast. Imagine communication between the experts the physicians, the HMOS and the insurance companies which reduces costs by amalgamating procedures.
JR: What are the expectations for telemedicine?
LR: There are so many applications that it will virtually dominate the health-care community, in my estimate, in 15 years. It will be a multi trillion-dollar industry.
JR: When are you starting that project?
LR: We are going to sponsor an invitational worldwide action agenda conference in all probability at the end of the first quarter of next year. JR: Who helps the children set up the Starbright computers?
LR: The computers themselves are housed in fanciful carts which have been redesigned by Steven. We are now talking to potential manufacturers. It’s going to look like a kind of toy, a very sturdy, colorful ergonomic and friendly presence. The work station, everything but the screen, will be invisible. You plug it into the wall and it runs. Any kid over three can operate a computer and, particularly with our interfaces, without help from anybody. The people who will be in direct supervision will be the people who normally have the most patient and family contact; the child-life experts, who are the certified people in the pediatric ward who have the responsibility.
JR: Not nurses?
LR: Nurses will participate, but the principal ingredient from a personnel standpoint at the hospital will be the child-life people and of course the researchers who are working on our protocols.
JR: The child-life people are employed by the hospitals?
LR: Yes. They are highly educated and certified people who sometimes have degrees in medicine, some times more often than not they have degrees in highly sophisticated research techniques. They do the basic hand-holding, interfacing with families, a wonderful group of people.
JR: Are they now helping with the tests?
LR: They will be directly involved in the tests. They will be the line soldiers. JR: What other plans do you have? LR: We have a heavily funded project that deals with diabetes; learning how to live with it. Not one of those video! tapes; it’s much more integrated..
JR: Ultimately, how do you see the pediatric network benefiting the children?
LR: The vision is that it gives them a world over which they have complete control. It gives them distractions which are very dense and varied in the sense that every kind of game known to man that’s appropriate is going to be available to them on this network. They can talk to each other. And remember, games are finite whether they take a day, a week or six months. You can play a chess game, and it’s over at a certain point. But the infinite game is that of human relationships and there is an infinity of possibilities in communication between these children who are in chemo, for example, who have no hair, children who are embarrassed about their appearance, children who are removed from their homes. Then a mutual therapy, you see, occurs.
JR: And your goal is what?
LR: What we are looking at in monitoring that process is how to use it: In a 12-step approach? or, Let it happen in some modified structure? We’re going to find out. Nobody can tell now how it’s going to work. If a-kid in a hospital in Israel suffering from a disease is talking to a kid in a hospital in Chicago. There is a unique experience they can bring to each other’s point of view. It’s a thrilling opportunity. It can also be very educational, bringing cultures together. It allows kids who speak different languages to talk to each other, Latino to an Asian, an Asian to an- American. At some point there will be language translation capability on-line, a voice recognition capability. It’s going to happen. It exists in text now. So we will be looking at all this stuff once the facility is up and running. It’s quite extraordinary.
JR: The ultimate goal is to make Starbright World worldwide?
LR: Yes. If it works then we will present a package to hospitals around the world, which they can buy into and we’ll help them set it up. There are costs attached to that. But the idea of the package is to excite local philanthropy to support it, which is what we’ve done so far, and to integrate it into hospital activities. The secondary approach is to amortize any costs through the utilization of it for telemedicine purposes because our network is capable of carrying this. It’s broadband and has a very large computing capacity and can handle a lot of stuff other than just what we are giving the kids. So there is an amortization of costs. which brings the cost of operation down, a rationalization for the inherent costs of the children’s application.
JR: What will Steven’s participation encompass?
LR: He’s the chairman of Starbright. He loves kids, he loves to fool around with computers. He has been present at all our demos. I’ve accompanied him to hospitals where the two of us have sat around with kids and watched them work on the computers and play with each other. He’s very hands-on.
JR: Was Starlight your idea?
PS: Originally, yes, but it’s been amended by many other great brains. JR: What prompted this idea?
PS: In 1982, I granted a wish to a child who was seriously ill. My cousin, the actress Emma Samms, had met a little boy in London who had a brain tumor and was hospitalized. His prognosis was terminal, his great wish in life: to see Disneyland before he passed on. I arranged for Sean to come to Los Angeles with his mother, and he, his mom and Emma all moved into my condominium. For two weeks we did all the things you’re not supposed to do with a seriously ill person, let alone very seriously ill person, and we had the most wonderful time. Sean enjoyed himself, and we enjoyed watching him enjoy himself. His mother had a great time. It was an extraordinary experience. Sean went back to London and, in fact, did die about four or five weeks later.
JR: What did you learn from your time with Sean?
PS: We felt we had really been blessed by the experience we had with him. When I told the story to a man from HBO at a business lunch a couple of weeks after Sean died-it was very much on my mind-he cried. I realized then that this was a very powerful concept, and out of that was born the Starlight Foundation, which is now 13 years old. Starlight does two things: it grants wishes to children who are seriously ill throughout chapters in the United States, Canada, Australia and the United Kingdom, and it also installs audio-visual entertainment. This can be a room in the hospital or in the pediatric wing, and we also have 1,000 audio-visual centers, which are on wheels and that slide over beds. They are installed now in about 400 hospitals. That program is called Starlight Express. JR: What came next?
PS: About five years ago. I started thinking that, as well as showing regular off-the-shelf software to kids who were ill, on the Starlight Express Fun Centers, it might be possible to actually make software that would be more focused on the needs of children. That coincided with learning about the then-just beginning field of psychoneurosis monology. PNI, which is quite well advanced in a lab setting, studies the interrelationship between mental health and the immune system and posits the fact that the immune system of a person who is clinically depressed is quite often impaired. Then I realized that here we were sitting with the entertainment industry all around us and, really, no one had ever asked film makers or the computer people to dream up solutions to overwhelming challenges or at least initially overwhelming challenges faced by children who are seriously ill. We sponsored a piece of basic research at County USC Medical Center in Los Angeles.
JR: What did that demonstrate? PS: We were able to show another interesting phenomenon: When we measured the number of times children pressed the medication button-which sends a microdose to pain medicine through their IV per hour before, during, and after the Starlight Express Fun Centers were slid over their beds, we found an enormous, almost an 80% overall. diminishment in the self-dosage of pain medicine or analgesia in that patient population. So, we thought that is very interesting, as well.
JR: When did Steven Spielberg come into the picture?
PS: At around that time I started talking to Steven, who very quickly embraced the idea that though we are sitting at the apex of the entertainment industry, with the ability to marshall enormous resources of intellect and creativity both in the entertainment sphere and the world of computers and high technology, no one had really done anything in a systematic fashion to help children who were seriously ill.
JR: How is Starbright structured?
PS: We built it on three pillars: serious medicine, in which I include health care professionals in their widest sense, including nurses and people who specialize in rehabilitation; high technology-the whole Silicon Valley grouping which, of course, is much wider geographical ly than just Silicon Valley; and the entertainment industry in its broadest sense actors, writers, directors, producers, studio executives, etc.
JR: How did you begin?
PS: We sat down with pediatric psychiatrists and psychologists, nurses, and other health-care professionals and we asked them what their biggest problems were. We came up with a descending order of areas in which we thought we might hypo- thetically be able to assist. We then hosted a large conference about 18. months ago, where we sat at 10 tables of 12. At each table were four entertainment people, four healthcare professionals and four high- technology people. Each table was given a very specific challenge..
JR: Such as?
PS: Children with juvenile-onset diabetes have difficulty sticking to their regimen their diet, their shots-and there are consequent problems related to weight and self-esteem. We are working on a CD ROM which will be the Best Buddy of a diabetic child. It will not only be educational but entertaining. It will provide peer support for the child. Another example: There are certain painful medical procedures that are performed on younger children where the ability to anesthetize is limited. Examples would be treatment for burn victims and spinal-tap procedures, which sometimes have to be repeated because the child moves. The challenge given to our people was What is the most distracting you can be with a virtual reality device?
JR: Any other new projects?
PS: What we now have is a project. working with Silicon Graphics, and are about to start testing at UCLA in the Pain Program there under Dr. Lonnie Zeltzer. We have a virtual reality helmet with which the child listens to enrapturing music while having the sensation of riding down the Grand Canyon on the back of a pterodactyl bird that he or she steers with a toggle. The hypothesis is that it will be so enrapturing that it will diminish, or modify in a beneficial way, the pain medication that is needed to achieve a level of relaxation and compliance. Another example is something we are working on with a company called Realmation: Sitting next to the child on the hospital bed, or at home, will be a three-dimensional two-foot-tall Barney, as in Barney the purple dinosaur, which moves its mouth, head and arms and which can speak to the child. It receives its electronic instructions from the television program that’s on the screen in front of the two of them. It’s almost as though a character has come out of the screen to sit next to a member of the audience.
JR: Is Starbright World your biggest project?
PS: Yes: It’s a multisite, broadband, interactive optical-fiber network, courtesy of Sprint. The switching equipment is courtesy of UB Networks, software courtesy of World Inc. and the terminal equipment has been donated by Intel. I thought the defining moment in our June press conference was when Steven Spielberg, as ET, asked the little girl where she was. There were 500 adults sitting there. Every single one of them, including me, thought she was going to say, Lucile Packard Children’s Hospital at Stanford, or words to that effect. Instead, she said, “You can see me! I’m right in front of you, next to the castle!”
JR: What did that show?
PS: What we conveyed there was that it is possible to create a playground in cyberspace. We think that this is the first time anyone has really, in a non-text-based environment. created a fully interactive world in which humans can speak and be heard, touch and be touched. It’s designed to be extremely collaborative. Some children carry ladders, for example. And other children. need ladders. So if you need a ladder to climb up somewhere, you have to go and find a child who has a ladder and ask their avatar, or icon, to come over with you and let you borrow it So it’s designed to create socialization. It’s very intricately designed under the guidance of child psychologists and psychiatrists.
JR: Was Starbright World your idea?
PS: No, I don’t claim that as a Samuelson invention. I suppose if it has a father, it’s Lee Rosenberg, of William Morris. Lee is the one who thought this was a very good idea and whose entrepreneurial skills have helped us get it funded and off the ground. But there are probably 30 or 40 people who have shared the collaborative creativity to have come up with the various projects.
JR: What other plans are underway?
PS: There are low-tech projects as well. We are working with the Pasadena Art College Center of Design on redesigning certain items of furniture for a pediatric ward. For example, an IV pole. The last time they re-designed IV poles, I’m told, was during the Civil War. They are dangerous because children like to scoot around on them, but they have a high center of gravity and are constantly falling over. So what we’ve done is create one that’s designed to be scooted around on. It has a very low center of gravity and looks like a great big orange and yellow bumblebee.
JR: Anything else?
PS: We’ve got a toddler crib which has no bars but with sides so that children can’t climb out. We’re working on whether it’s possible to put an aquarium into the foot end, which will be sealed but which will provide a fiving environment that the kids can look at, as opposed to just bars, metal and plastic.
JR: How many hospitals are in the pediatric world?
PS: By the end of this year it will be seven. We obviously hope to expand that considerably. It should be stressed that the initial Starbright World project is very much a test. It’s work-in-progress. Our sense was that we had to turn it on and then learn from the children as it evolves.
JR: What is the feedback so far?
PS: They love it. We’re trying to deal, at the moment, with questions like. What do we do when the child goes home and they can’t use it any- more? Because it is so enrapturing that it completely changes the effect of being in the hospital. It seems to have a wonderful effect. It’s early he yet. We’ve only just initiated the serious medical studies which will be result, I hope, in publishable papers as we study out comes. We only turned it on in June, and we don’t have all of the seven sites connected yet; they are being connected as we speak. So it will be a few months before we start seeing patterns.
JR: What about the applications for the future and expanding?
PS: The long-term goal is to have it in every pediatric medical facility in the world. How long that will take. no one knows. Obviously, we are dealing in a field where cost comes down and technology becomes more affordable almost by the minute, and we hope to benefit from that. The other thing is, we will work out, in due course, how to send it home with outpatients.
JR: You are a film producer. Tell me a little about your work in that field.
PS: My most recent film was Tom and Viv, with Willem Dafoe and Miranda Richardson Two Academy Award nominations, a Golden Globe nomination. It was designed as a labor of love, for the women we loved. But Starbright is certainly the most wonderful stuff that I do. People talk about entrepreneurial skills as though they can only operate in for-profit environments. They’re completely wrong. because one of the greatest thrills as a business person is applying the skills that one has learned-let’s say as a film producer-to the nonprofit world. We are putting groups of people together from our three pillars of knowledge who would otherwise never ever meet. There is a synthesis we are working on among individual areas of knowledge that I think is tremendously important for the country and the world.
JR: You obviously believe that two heads are better than one.
PS: We live in an age where, because of the growth of human knowledge, which is exponential, no one can know everything. We’re all specialists. I was talking to someone at UCLA yesterday. His entire job. after many years of training, is looking at X-rays of knees-‘doesn’t look at elbows, ‘doesn’t look at ankles, just looks at X rays of knees. And I’m sure he’s as good as you can get looking at X-rays of knees. But we have become a nation of specialist professionals and what we have not focused on is the need for sophisticated laypeople with entrepreneurial skills and skills of persuasion to create forums where these sub-specialists can come together to attack and address issues.
JR: You seem to have an interest in medicine because Tom and Viv was about a medical psychological problem.
PS: No coincidence. Many people have said that. I’m certainly a layperson. I certainly don’t have any letters after my name.
JR: Where does the Starbright funding come from?
PS: Norman Schwarzkopf is the chairman of our capital campaign. We’ve raised a little over $20 million in kind services and money so far. For example, the Sprint donation is many millions of dollars. worth of long lines. So I think we are doing quite well.
JR: Who takes care of the funding aspect?
PS: We all do. We all worry about it continuously. Murphy’s Law of philanthropy is that you always need slightly more money, or a lot more money, than you actually have or can raise.
JR: To what extent is Steven Spielberg actually involved?
PS: Steven, to the great gratification of those of us who have been there since the beginning, has recently been describing Starbright as “his” charity, which I always love to hear. Steven has probably the greatest creative instincts on the planet. One sees them in his films, and I think what we’ve done is to give him a forum in which he can exert these toward a cause that he feels very strongly about having kids of his own-which is children who are less fortunate.
JR: I heard that his wife, actress Kate Capshaw, taught special education.
PS: Yes, I think so. Certainly I know she has done some wonderful things at Children’s Hospital, in Los Angeles with regard to entertainment for kids who are ill.
JR: Does she get involved with the pediatric Starbright Network?
PS: There have been a few things; we’ve done some film. premieres, which have helped to make money. But primarily Steven is the driving force in Starbright’s direction.
JR: What is Candice Bergen’s role?
PS: I think she was enormously moved and articulate in what she said at the press conference, and I’m looking forward to more opportunities to talk with her about Starbright.
JR: Any plans for her to be a spokesperson or rep resent it?
PS: Not at this point. She there because she’s a spokesperson for Sprint, one of Starbright’s major sponsors.
JR: But other than that, might she be a Starbright spokesperson down the road?
PS: No, although she said to me, “Let me know what I can do to help.” I’m sure we’ll come up with something.
JR: What is the biggest challenge technically at this point?
PS: This is a bit like starting Federal Express. I always think that must have been an amazing entrepreneurial achievement because you couldn’t start it regionally. You had to simply say, “Right, on Thursday we’ll start everywhere. You can write any address you’d like on the package and we’ll deliver it.” which meant that when they started, it must have been an enormous investment. I sometimes think that’s the analogy for Starbright World, we couldn’t turn it on in just one site. We had to effectively turn it on all over the place at once. Therefore, the logistics of it have been quite challenging, especially as we are on the cutting edge-hopefully not the bleeding edge of the technology and a lot of what we’re doing has never been done before.
JR: What is your group’s mission? AB: One of the things we do is make sure that any kid or adult, no matter what his or her disability, can use technology their way. We try to build “electronic curb-cuts.” The point is, once you have access to the personal computer, which is really the front end for Starbright, then you can play, run, jump, interact within Starbright World just like anyone else.
JR: How specifically does this apply to Starbright?
AB: If you have a kid who is paralyzed from the neck down, a kid who can only move his toes, or a kid who can only reliably raise his eye brows up and down or who needs to type with a head stick or mouth stick, our job is to make sure that kid is able to get into Starbright and be whoever he wants as easily as it is for any other child. It’s a democratization of opportunity, and the technology is just way too powerful to tell kids who mostly need power, they can’t get at it.
JR: What else is significant about accessibility?
AB: For kids with disabilities whether they are profound or mild once you are in Starbright World, you’re anybody you want to be. No one needs to know, if you don’t want to let them know, that you’re accessing the computer by raising your eyebrow up and down or by using a single switch that you hit with the side of your head. They don’t need to know that you’re in a wheelchair, that you’re blind or that you’re deaf. You can be whoever you want to be, and then you can also disclose who you are over time, when you’re comfortable. It’s all about your choice. Having a set of options when you have a disability is rare. The world automatically thinks it knows who you are, and so it pigeonholes you that way. This way, you can let the world know first who you are. your way, and that’s a very nifty choice. this whole ability to express yourself and pro claim yourself on-line in this virtual world. Just being on-line is a wonderful experience for kids and adults with disabilities, and we want to make sure that since you need to get there via a computer, you can operate that computer your way.
JR: Are you using any new devices for the Starbright Pediatric Network that you’ve never used before?
AB: We don’t need to, which is a nice thing. We began our office at Apple ten years ago, and since then the industry for what are called adaptive devices or alternative input devices, has matured so much. It’s as if I said to you. “I keep seeing these curb cuts in the sidewalk. Aren’t there any new curb cuts?” There don’t need to be. Those work perfectly. We could decide to put maple bannisters on them, but why bother? These things work fine. There will obviously be innovations in ways that folks with disabilities can use computers; those are in the lab right now. If they came out tomorrow, they’d be pretty expensive because they are new and economics being what they are…So the tried-and-true kind of curb cuts, if you will, are still the best. They are the least expensive and are the most available.
JR: These interfaces are attached or installed?
AB: Put it this way: If you were blind and you had invented the personal computer, you would never have had a monitor as part of that invention. If you were paralyzed from the neck down and invented the personal computer, there would be no such thing as a keyboard. You wouldn’t need that. So you would have to get your input into the computer in an alternative way. That’s what these devices are-they are alternatives to the standard key- board, the standard mouse or the monitor. There may be various kinds of switches that you operate by raising an eyebrow or smacking your elbow or tapping with a toe. It might be something you sip and puff with a straw, or control the cursor by moving your head. There are all kinds of adaptive devices. Their effects are magical.
JR: Is there need to go to other manufacturers for the devices used in the Pediatric Network?
AB: In most cases, the adaptive devices do come from specialized third parties who receive their technical assistance from the major computer manufacturers, so that if you decided to build a new kind of one- handed keyboard, your engineers would clearly have to work with engineers from IBM or Apple or other groups to make sure that it came off. In many cases we are unable to build-in these adaptive devices, mostly because of cost rea- sons, which is to say, a non-disabled Person doesn’t want to pay for too many alternative input devices built into every machine. So when it’s not cost effective to build them in, then we work with a relatively small stable of very nifty third-party companies who are just better at building curb cuts than we are.
JR: Have any of these devices been tried in the test that is now underway?
AB: So far, I don’t believe so. There are a lot of things to test with Starbright, but the thing, in my view. that needs to be tested least of all is whether or not these alternative input devices will work for kids with disabilities because we’ve been testing them for ten years. The curb cut in that sidewalk will allow someone in a wheelchair to get on and off that sidewalk. Period.
JR: By testing it, you mean not just in the lab, but buying and using
AB: Yes. These have been around the world now. They are reliable. They work. And sometimes they’re not only for disabled kids. It’s just like the curb cut in the sidewalk. It’s just a better designed sidewalk. It’s good for parents pushing baby carriages, kids on skateboards. So some of these alternative input devices may turn out to be useful for a kid not because he’s disabled but because he’s sick in bed and weak and doesn’t feel comfort- able sitting up and typing. This provides alternative ways for him to use the technology until he does feel comfortable. So he’s temporarily disabled, if you will. For some people, those are necessities. For almost everybody, they’re conveniences. We are not worried about testing the efficiency of adaptive input devices because thousands of people are using them every day. This is not new technology. JR: What is new?
AB: That we still feel the need to literally run around the world grabbing lapels of rehab therapists and others saying this stuff is here. There’s no one with a disability who can’t have access to a computer.
JR: Is there resistance?
AB: No, there is just a lack of awareness, Today’s crop of older rehab therapists was never trained in this stuff-couldn’t have been. But the younger therapists are all over it and tell us that it’s “the technology of independence.” Some of the older rehab therapists are risk takers, but most of them have been doing it their way for so many years-and why change now? That’s understandable. We saw that in K-12 education for a while when computers first came out. So we spend a lot of time trying to make sure that people are aware of what’s around and what provides new options for people with disabilities. Usually the reaction is like V-8 commercials. They smack their forehead-“I didn’t know!”
JR: What is your background? You’ve always had a special interest in disabilities?
AB: It’s all I’ve ever done. I started an office here ten years ago. The previous 16 years I was in the nonprofit sector back in Boston and Cambridge. I ran a camp for retarded kids and families for eight years, did some series on disability awareness on PBS, did some books. It’s just a field I’ve been in forever. And, realizing that Apple, a technology company, did not have any systematic program to address the needs of people with disabilities just felt wrong to me. I told management, and it felt wrong to them, too. They just weren’t aware of it.
JR: How did you get interested in this area?
AB: No grand story. Like a lot of people. I volunteered at some state hospitals 25 years ago and couldn’t believe that some people live their lives that way-and it stayed with me, I guess, in a different place, in a different way than ancient history or Shakespeare did. So did the people in the field. I think more than anything, I was influenced by where this hit me and who the people in the field were. They were a different quality of folks that I was finding myself rubbing elbows with than in any other interest area during my years in high school or college.
JR: I imagine many celebrities with disabilities have availed themselves of the services of your Solutions Group.
AB: I can’t tell you how many things we have done with people who are very famous and no one will ever know. When we do it, we say “The only thing we ask of you is that you do not thank us publicly because, number one, we are not doing it for publicity and, number two, my office is not about philanthropy even though the assumption is that since you’re dealing with dis abled people, you must must be doing charity. From day one we made the decision that we were not going to do philanthropy out of this office. We were not going to treat disabled people as charity. But we will treat them as no less discerning a consumer as anybody else. So every once in a while a story comes in over the (tele graph). It could be about a little kid that nobody knows or somebody famous, and it just gets to you in a different way. So we decide, for no reason that we can formalize, that this person will get some technology help, but not as charity. We call the kid and say, “You’ve been doing some interesting things. How would you like to become a partner with us and develop a poster series or a newsletter?” They are now working with our office rather than having to say thank you.
JR: Computer technology is so helpful. But many people with dis abilities are still unaware of what is available and how systems can be customized to meet needs.
AB: My view is if you have a dis ability, you must have technology. I don’t care if it’s Apple or IBM. I don’t care whose is it but because of what it makes possible, people with. disabilities have to have access to technology. And part of the reason for approaching’ more visible folks with disabilities is if the rehab professionals see what technology makes possible and they are more likely to see that with a visible personality then, hopefully it will influence their practice, as well.