Entering the home of Loreen Arbus, almost all senses are tickled at once. A never-ending color palette of combinations not typically seen under the same roof, and yet reds, pinks, gold, turquoise, patterns, polka dots all living in perfect harmony. Her love for vibrant energy shows in the pieces of art and sculptures she has chosen to display throughout each room, hallway and, yes, bathroom. Initial thoughts circle around whether or not someone actually lives in this comfortable museum. A subtle aroma fills the home from incense softly burning by a window. The flavors she paints her environment are important in understanding her dynamic character of experiences, desire to connect people and tireless advocacy for inclusion. Arbus is the daughter of Isabelle Goldenson, co-founder of United Cerebral Palsy (UCP), which became one of the largest health organizations in the US. Her father, Leonard H. Goldenson, was founder and chairman of ABC. She serves on over a dozen non-profit boards, is currently the President of The Loreen Arbus Foundation, The Goldenson-Arbus Foundation and Loreen Arbus Productions Inc. and is the first woman to head programming for a national network, including Showtime and Lifetime Television. She has a penthouse in Los Angeles and an apartment in New York—where we chatted overlooking the enchanting Central Park.
Arbus: (laughs) I was the biggest baby born in the history of the White Plains Hospital. I weighed 11 3/4 pounds.
Martirosyan: Did they give you a plaque? (laughter)
Arbus: There is one! It was an auspicious birth: my mother never forgave me. (laughter)
Martirosyan: In your talk, you mentioned that there were three disruptions in your life.
Arbus: There have been too many to recall, but lately I’ve been talking about marginalization a lot. I had these long lists of causes that would make people’s eyes glaze over, but when somebody asks, “What does your foundation do?” I couldn’t give a simple answer. You can’t do that many things and have anybody pay attention. I’m interested in so many things, and I can’t possibly narrow it down, and I’m not about to. Anything, everything and everyone who’s marginalized potentially has interest for me, and all the areas I focus on have that element of people or animals being marginalized, whether it’s women and girls, issues to do with public policy, animals that cannot fend for themselves… The lack of women artists’ representation is a very big area interest of mine: on every wall of every museum in this country, women have done less than five percent of the paintings and sculptures.
Martirosyan: That’s unbelievable.
Arbus: I can understand museums having a problem with their statistics because going back hundreds and thousands of years, women had no place in the world, so to speak. But it’s still so shocking that it has hardly changed. In the media, women are totally marginalized. There are a lot more women anchors and reporters, but the percentage hasn’t changed. When you look at producers, directors and writers, when you look at people with a disability having a role in television, being portrayed in television, whether they’re acting or not, it’s much less than one percent. And the disability population is over 20 percent of the country. So that’s my elevator pitch.
Martirosyan: Ding! Your elevator ride is over. (laughter) If I were drilling you about what to do about that, how would you say one could help, beyond simply being concerned?
Arbus: While it’s important that people do give to capital campaigns, this is something that I never do. To me it’s like sending a bottle into the ocean and hoping it will reach a shore somewhere. My giving is very targeted to a few people within various initiatives, such as research, where there’ll be documentation and statistics. As an example, research I’ve commissioned revealed that over 70 percent of all children in foster care have a disability is not something that is well known, talked about or publicized. Now we have to find different ways government authorities, foster-care agencies and others utilize this awareness to make a difference in the programs that we have. Another great interest of mine is fashion design and art, but I’ve never understood why so few people are coming up with designs for people with disabilities. Now there are two sides to this: some people with a disability don’t want something specifically designed for them. My feeling is that there should be a lot more universal design in the market—for people with and without disability. When I’m struggling to get dressed and have to go down to the lobby to find a woman, and there are none on staff here to help me zip up my dress, I’d be so grateful if somebody came up with a design to assist me with that.
Martirosyan: Tell me about your recent Design for Disability event.
Arbus: We did a search throughout the country for designers in association with the Fashion Institute of Technology. We had 12 finalists, and each one had an assignment to design for a woman with a disability. Every one of the models was in a wheelchair, on crutches or used a walker. It was pretty darn exciting to see. They were so excited to present, and the audience was so enthusiastic. Every designer got something, but the number one person got a bigger amount of money. Have you heard of Rent the Runway? Anywhere in this country, if you have a graduation coming up or a wedding, but don’t have the budget—this company, started by two women, has items for rent by over 500 major designers: Dolce & Gabbana, Calvin Klein, Tommy Hilfiger. It’s a who’s-who of designers. They have four million members. It’s all virtual; you go online.
Martirosyan: That makes so much sense.
Arbus: So for the event they said, “We’re going to tag everything for people with disabilities, and how it can be utilized.” That was over 50,000 garments! My personal goal is to start a for-profit fashion line with designers who create for people with disabilities and/or people with disabilities who are designers. Rent the Runway is currently only for women, but my line would be for everybody.
Martirosyan: That is so needed.
Arbus: I met a lovely woman at TED four years ago. It was the last day, the sun was shining, and we were at a wonderful picnic for those who didn’t leave right away. We got to talking, and she told me about her online business. Her name is Carrie Hammer.
Martirosyan: She had a fashion show recently, right?
Arbus: You read about it?
Martirosyan: I did.
Arbus: Great! Four years ago I said to her, “Have you ever thought to design for women with disabilities?” She said, “No.” I talked with her about that. She became interested.
Martirosyan: So you were behind that?
Martirosyan: Very cool.
Arbus: And so at my next Women Who Care event, I sat her next to Dr. Danielle Sheypuk, who is a wheelchair user and a psychologist with a very interesting practice, because she can do therapy via Skype, which is pretty cool. She was named Miss Wheelchair New York a couple of years prior. They struck up a really good friendship.
Martirosyan: We met her at ReelAbilities.
Arbus: Exactly. So Danielle was the first model Carrie had in her fashion show. She had never been at Fashion Week. It was spring two and a half years ago. And shortly after that she made the commitment that she will not do a Fashion Week—twice a year, spring and fall— without at least one “role model,” who can be any size, any age. They are role models because they’re doing terrific things in their lives and should be known. Danielle was the first one with a disability but not the last. And I’m sort of obsessed with that world because image is so much a part of the obstacles, the aspirations and an area that has to be challenged. We see very few commercials with people who have disabilities. I think the concept that you cannot be what you cannot see is really valuable. We need to see on television, in print ads, in all media, in the workplace, on the street, people with disabilities who are functional in ways that for many are unexpected. I have a goal to get the first woman with a disability on the cover story of the Sports Illustrated swimsuit issue. Playboy did do, to their credit, a centerfold like that [Ellen Stohl], but Sports Illustrated hasn’t so far. So I put together a list of ten women who have a disability. I think three of them, maybe two of them, were in the Olympics, and the others were in the Paralympics. Stunning women. I’ve spoken with the former head of ESPN about it. I mean, why not a stunning beautiful woman with a disability?
Martirosyan: Very nice.
Arbus: I think it’s exciting. In answer to your earlier question, a lot of the research that I underwrite is seminal. Dr. Michelle Ballan is studying violence against women with disabilities. This has been her life’s work. She’s at Columbia University, is brilliant and has become a great friend. She is not only exposing this horribly taboo area, but she is also coming up with proactive information and recommendations, so that people can look for signs of abuse, violence and rape against women with disabilities. It’s estimated that one out of two women with a disability has been abused. That’s staggering! It’s unknown territory, much like bullying before people finally recognized it.
Martirosyan: You’ve mentioned bullying before.
Arbus: I came forward as one of the perpetrators. There may be others who have come forward.
Martirosyan: When did you become aware, “Wow, I was the bully”?
Arbus: I was a bully because I had so much pent-up anger, and I had nowhere to go with it, until I had two amazing people in my life who helped me channel it. And I was so angry because I personally was marginalized, many times over. I was the only girl of my faith at my school, and the discrimination was rampant. For a long time, I did not realize I was being discriminated against. I didn’t know why I wasn’t being put in the front row or given a solo as a dancer, when I was the best dancer in the class and probably the school. I overheard girls on the school bus talking about the older brother of one of the girls, “You can’t date him. Wrong faith.” And I thought: “That’s my faith.” Also, my mother was bipolar and schizophrenic. But because she was the wife of the chairman of the board, she was considered eccentric, which is a pretty interesting phenomenon. How many people are treated differently by virtue of their birthright and/or circumstances? People used to draw straws as to who would have to sit with my mother at company dinners. Many times over she was abusive to my younger sister and me. That’s another area where I was marginalized, because no one would come to my house. Every mother said, “we’re not going to let you near that woman.” I didn’t blame them; I didn’t want anybody coming over. It was scary.
Martirosyan: That was a lot for you to have to deal with.
Arbus: And probably the biggest reason people didn’t want their children to come over was my older sister’s disability. We’d go into a restaurant, and if we got seated— and most often we did not—they would put us back near the kitchen. Wherever we went, we were discriminated against; it was probably like what it must have been during the Civil Rights Movement in this country.
Martirosyan: We call it a civil rights movement.
Arbus: And it’s not that it’s totally changed; it’s just slightly better. As we traveled the country, Howard Johnson’s was the only restaurant and/or motel willing to accommodate us. Unfortunately, Howard Johnson’s is down to so few locations. I love that company, and I’m so grateful to it. My sister would sit in a wheelchair. She had a bib. She drooled. She made strange sounds. Her caretaker, the most remarkable person in my life, I always referred to her behind my mother’s back as my “adopted mother.” Karen Hansen came into my older sister’s life when my older sister was two, way before I was born, and stayed with her till her dying day. She never took a vacation. Ms. Hansen felt it was very important for my sister to have a sense of self-respect and self-sufficiency. She’d put the spoon in her hand, and my sister’s spastic movements often meant the food was going some place else, but she wanted my sister to be able to feed herself. She thought that was important. So many restaurants did not have us come back. I’m sure you’ve been up against that: Taxis that go right on by. Uber doesn’t have anything that forces them to accommodate people with a disability—
Arbus: My mother made huge changes for people with disabilities. To my dying day, I do whatever I can to pay homage to my parents because of the differences they made in this world. My personal relationship with my mother was not all that meaningful, but I have so much respect for what she accomplished. She was responsible, 15 years before the ADA, for what I feel is more important legislation: the Architectural Barriers Act, Proposition 502. It was her idea that every single sidewalk in this country be wheelchair-accessible, and that became federally mandated because of my mother. She also pushed for every set of public telephone booths to have one that’s lowered so it’s wheelchair-accessible; that every public bathroom has a stall that accommodates a wheelchair; that every public parking garage has handicapped-only spaces. I often wait to see somebody get out of a car or to return to the car. And at theaters they’ll say, “There’s one bathroom stall open.” And I’ll say, “Neither you nor I have the right to use that. That is not for us.” I get so angry about people’s lack of respect for these situations, and why they’ve been created.
Martirosyan: I know what you mean.
Arbus: And there’s a lot more of my mother’s ideas that have been incorporated. She said, “They can put a man on the moon, but what are they doing for people on Earth?” She never said, “Please.” She said, “I want a meeting at Ames Research Center,” which is our NASA research headquarters located in Southern California. My father set up the meeting, which was not difficult for him to do, and they basically felt they had to accommodate the chairman of the board and his wife. So my parents went there, and what was to be a 15-minute meet and greet turned into many hours, and that turned into a three day conference a few months later. My father asked three former presidents of the United States, as well as, and also the head of the National Institutes of Health, the then head of Harvard University, where he graduated. My mother had the idea that MIT should work with Harvard, because she saw the potential of MIT programs to make a difference in the medical science research Harvard was doing. So now they have a dual degree program. Out of that program came a lot of the technology invented for outer space. For instance, a heavy spaceship needed to be light enough to get to the moon, which required finding lightweight materials. So titanium was born from the space program. It required braces that were so heavy—and 99 percent of the time women were lifting those braces. Applying that technology to wheelchairs cut their weight by half or more than half. Also by using remote control, astronauts could climb into the moon’s weightless environment. Then my mother said, “Why can’t you use remote control for people with disabilities to be able to move their limbs?” So the staircase that wheelchairs ascend came as a result of the space program.
Martirosyan: Tell me about your history with Media Access.
Arbus: Fern Field, a TV Producer, called me up. She knew I was an early disability-rights activist. She said, “We have an initiative, but we don’t have funding, we don’t have a platform, and we need help.” I said, “Let’s go. Let’s do it.” She and her husband Norman Brooks had already created it, but I’m acknowledged as a cocreator, which is lovely. And I took it to another level, our annual gala to another level, the board to another level. Similar to some of the grants that I’m giving out. It’s not just, “Here’s your money,” it’s overseeing them, trying to implement media exposure for them, giving them guidance along the way. I’ve set up these grants for a lot of reasons, with a ton of organizations; I couldn’t possibly deal with the onslaught that would come to me otherwise. Whether it’s New York Women in Film and Television, the Alliance for the Arts, Women in Communications, the Academy of Television Arts and Sciences, UCLA—there are a lot of them, and now one at the Fashion Institute of Technology. That is, in answer to your other question, how do I reach people?
Martirosyan: How did you turn situations that felt like a negative into a positive?
Arbus: And have an impact.
Arbus: Here’s a really good example. A young filmmaker with a disability gets her award and my grant at the New York Women in Film annual event. As 2,000 women and men in the film and television business watch this, they say, “Oh, I never thought of that.” Our grant applications go out to organizations and hundreds and hundreds of colleges and universities, so that people say to themselves, “Maybe I could do something on that subject. I never thought about it, but there’s money.” It potentially involves them in a subject they knew nothing about. And, when I get really lucky, that person gets hooked beyond the one project. I underwrite a multifaceted grant for the Women’s Media Center so that articles are written about issues and experiences that have to do with disability. They reach millions of people. One article profiled a young Serbian woman with a disability who was escaping. It dealt with her incredible journey. And there are many different stories from all over the world. I do the same with Women’s eNews, which is the equivalent of Reuters or the Associated Press.
Martirosyan: Can you get any big names to work with you?
Arbus: Jane Fonda and Gloria Steinem are at all the meetings, on the phone making suggestions. I co-chair with them an annual Gala for the Women’s Media Center.
Martirosyan: While we were at the UN, they said every 24 hours in America a million people a year—or some staggering number like that—are turning 65. It’s the largest movement in an age group in the history of the world, and with the largest disposable income as well.
Arbus: It has a huge business potential.
Martirosyan: You’ve done well; you’ve broken some ceilings, haven’t you?
Arbus: I did. I never wanted to ride on my dad’s coattails. I adored him. He was an amazing person, an innovative, modest, small-town boy. His parents had the only general store in their Pennsylvania town. His mother was a very strong woman and said to him, “Leonard, you’re going to go to Harvard.” There were very few kids in that school, he was in the top percentile, and didn’t have to take tests. So he got to Harvard and didn’t know how to take a test, but, worse yet, he didn’t know very much of anything. The standards at the school were so different than what he found at Harvard. A cousin of his who was at Wellesley said, “I’m going to help you study, and you’re going to learn.” I feel so fortunate that both my parents had great values. My mother was horribly strict, but it had its advantages. I took my grandmother’s maiden name, Arbus, when I was 13 or 14.
Martirosyan: You had your own mind.
Arbus: I like doing things my own way. But I never want to ride on somebody else’s reputation or make things easy. When I first got to Hollywood, I worked on a lot of X-rated films, behind the scenes, as the assistant to a cameraperson who also worked for Entertainment Tonight by day. I also had a job editing the X out of films because there was a house that was trying to make their films R-rated to get better distribution.
Martirosyan: Did it change your mindset after seeing so much porn?
Arbus: I was very popular. Everybody wanted a little bit of the footage and a lot of the stories.
Martirosyan: That’s funny!
Arbus: The whole scene made me very depressed because it’s so debasing. There’s a woman named Gail Dines who’s written an amazing book called Pornland: How Porn Has Hijacked Our Sexuality. Her premise is that boys get their sex education from porn, which means that they’re going to be much more inclined to abuse women and be violent because that’s what they see and accept as the norm. Young girls think that boys are asking for something that young girls are supposed to deliver. It’s a vicious cycle. She talks a lot more articulately about it. It’s brilliant. The world of abuse keys into the world of disability, as well. It’s not out there as an issue as yet, but I’m bound and determined to make that happen. In terms of other glass ceilings, cable programming had the CableACE Award, but it was not ever possible to get a cable program considered for an Emmy. I lobbied long and hard to get the Academy of Television Arts and Sciences to rethink their criteria, and finally we got cable in. I was responsible for the very first scripted original series in the history of cable television. Until then, everything in pay television was acquired feature movies. I was the first woman to be head of programming for a network. After Showtime, we turned another venture, Cable Health Network, into Lifetime Television for Women. The then-chairman of the board of Viacom called me up one day and said, “I want you to do something for me.” And I said, “Anything.” He said, “I’ve seen you, and you’re a very colorful person… We’ve done horribly in our first-run syndication area and with our pilots for network television. We’re hiring the wrong people. I want you to be present at all staffing interviews.”
Martirosyan: That’s a great compliment!
Arbus: Yeah! It was because I didn’t fit the mold. That was so brilliant of him to think out of the box. It’s great when you’re celebrated for your differences, which is what we’re all about. We want inclusiveness, but not at the price of sameness. Wait. That’s a good line. I’ll have to remember that! (laughs) There’s nothing more exciting and fulfilling than to go against the grain and accomplish something. For me it was always such a negative energy I was putting out there, going against the grain, picking on people, and being the bully I was—until I realized how powerful and satisfying it is to take that energy and make something happen in a positive way.
Martirosyan: When you look back, would you have changed some of those things that you knew you were doing to fight the status quo?
Arbus: Yeah. There would be two teachers who would still be at my school if I hadn’t made their lives so miserable and gotten them fired.
Martirosyan: The bully years?
Martirosyan: What about when you got into business and you were being the rebel? Did you see anything where you would say, “If I had gone that way, maybe doors would have opened quicker”?
Arbus: In all honestly, it’s less about what I could have done differently. I had the right ideas, but the timing was wrong, because it was not acceptable for those ideas to be coming from a woman. My better ideas were stolen. I’d sit in a meeting, and I’d hear, “You know what I think would be a good idea?” And then they would repeat what I’d just said and get credit for it. This happened over and over and over again. But even if somebody accomplishes something for all the wrong reasons, if the end result is a good thing it’s worth it. Even though I didn’t get credit on a lot of things, changes were made and projects came to be. The Elephant Man was a television project that did not have any supporters when I went to bat for it. Have you seen Me Before You?
Arbus: I had a very interesting experience along those lines when I tried to commit suicide one time. One evening when I was 14 or 15, my parents and younger sister went out to dinner, and I said I wasn’t feeling well. My parents let me stay in the hotel room. I had my plan all set to go. I had taken Bufferin, aspirin, Tylenol—anything you could get over the counter. I melted it all down, and I took a ton of that. Unexpectedly, my sister came back to the room to get a sweater. She could tell I was pretty groggy and out of it, and then she saw the bottles and said, “What have you done?” I said, “Well, it’s obvious what I’ve done, but it’s none of your business.” And she said, “No, I know it’s not my business, but I have to get you to the hospital.” I said, “No, you don’t. My life is my life. This is my choice to make. You don’t have a right to rule over my life.” And here’s what she said in a later discussion: “I couldn’t have lived with myself if I let you do it.” Point well taken. I think that this fellow in the movie took into account what others had to live with and suffer from by him taking his life, but ultimately that was his right.
Martirosyan: There are protests against that film’s message, which has stirred up quite a bit of concern.
Arbus: My credo is: I don’t pass judgment on anything unless someone is hurt against their will. On the way into the kitchen is my favorite saying: “Everything is what it is and its opposite.” If you think about this film and his choice it’s absolutely correct—and the opposite is also.
Martirosyan: We haven’t even talked the tango yet.
Arbus: That’s been a huge part of my life.
Martirosyan: Did you compete?
Arbus: No. I’ve never liked dance competitions. But I also think Argentine tango is antithetical to competition because it’s all about individual expression. When you look at dancers who are doing the waltz or foxtrot in the ballroom competitions, they have to keep to a very strict set of criteria. Ugh! That’s not of interest to me. Tango is a dance of rebellion and individualism.
Martirosyan: What about music? I see your piano. Do you play?
Arbus: Horribly, but I do compose a lot of tango, a lot of waltzes. I don’t read music, and I can’t write it per se. I work with somebody who’s an arranger; she transcribes what I hum… I can pick out a tune with my right hand.
Martirosyan: I used to play piano, and now these fingers won’t allow it. But—
Arbus: You could still compose. You would need an arranger.
Martirosyan: I’ll give that some thought. So, what are you doing tonight?
Arbus: Working. I have a zillion proposals I have to get back to people on. I host many events in my New York and Los Angeles apartments, each is attended on average by 50 people. That results in a lot of requests to get together and/or submit proposals. It can be quite overwhelming.
Martirosyan: What do you think about them stopping the telethons?
Arbus: The annual United Cerebral Palsy telethon was a remarkable event over several decades. The theme song was so beautiful and moving. “Look at us, we’re walking. Look at us, we’re talking.” It was like a rallying cry. For the first time people with disability were experienced in millions of American homes. It only came to an end because my father stepped down as head of ABC at age 80 and no one else could clear the station time the way he did.
Martirosyan: We’ve been invited many times to the New York UCP gala. I always wondered how they got so many celebrities to come out when it was just an affiliate.
Arbus: It was because of my dad. The best one, I think, was the year that Princess Diana and Colin Powell were both there. Trump was a co-chair with Ivana for two years. That was before the ego exploded and the politics came out. They had seven US Presidents and Governor Rockefeller attend; it was just amazing who they got over the years.
Martirosyan: That is incredible. I’m curious about your art collection and what might have inspired it?
Arbus: I was painting and drawing at a very young age. Everyone in my family is artistic, musical and suicidal. Not everyone, but a lot. Diane Arbus is the best known, a photographer, and the best-known suicide, I guess. We’ve had quite a few. They were all so eccentric. On my mother’s side, relations were always strained. There would be obligatory get-togethers periodically. Art and music for me was a way into other worlds. I was painting designs on my nails—when no one had ever done it. I have always felt it’s important that we be authentic and express who we are. People say, “You know, Loreen, you pay a price.” I’d respond, “I know. I’m going to get paid less money, and some people aren’t going to come near me because I’m too different…” For me, it was a great way to test people because, as a friend once said, “If somebody is strong enough or committed enough or brave enough to come into your world, that’s a person you want to have there.” And it’s true.