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.
Lia Martirosyan: In your TEDx talk, you pretty much announced you were going to be different from birth… Loreen
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?