Dr. Marylou Naccarato was an agent for the Internal Revenue Service for decades before she became a clinical sexologist. “As a former IRS agent of 23 years,” she quips, “people ask, ‘How did you shift from working in the tax field to sexology?’ I always reply, ‘Well if you think about it, I haven’t really changed professions. It’s all about whether or not you’re gonna get screwed.’” Standing at 3 feet 10 inches tall with a rare type of dwarfism called Kniest, Naccarato has become something of a pioneer in the Little People of America community. She was a speaker at its conference earlier this month in San Diego where she broke through conservative boundaries to talk the ins and outs of sex, intimacy, and lovemaking with the various limitations that may come with life as a person of short stature.
Born and raised in Los Angeles to a Sicilian Catholic father and a Moroccan Jewish mother, Naccarato found herself in the sex counseling and education field by accident. Although she was working for the IRS, she had always wanted to be a social worker, until one night when she watched a program on sexual health on a cable network. “They were talking about the Kama Sutra,” she recalls. “The narrator was explaining that in this particular male-female intercourse position, if the man was standing and the woman was on her back on the edge of the bed, it would be less pressure on his lower back.”
“When I saw the program it [piqued] my curiosity,” she says. Married to an average-size man at the time, Naccarato and her husband adapted their sex lives because she had issues with her hip—like most little people do—leading to issues with straddling.” Most of us will have hip implants and knee implants for mobility due to bone degeneration,” she explains. They adapted a side-by-side position to cope with her pain. “So when I saw the program on TV I thought, Wow, I wonder what other people are doing in our community, because no one is talking about it.”
What followed was a series of phone calls to her close friends asking what they were doing in bed. To her surprise, everyone was having challenges and all were excited to talk about it. This was 10 years ago. She started with Little People of America, an umbrella organization that provides support to people of short stature, whether information on scholarships and medical procedures or on artist’s funds and specially designed kitchen appliances. LPA gave her permission to develop a workshop at the conference in 2004 in San Francisco. “Had it been in the Midwest I may have had more difficulty getting approved,” she says.
She conducted a lot of research, including phone and in-person interviews with little people asking about their sexuality. She couldn’t find real, helpful information in libraries, bookstores, or online: “I thought, Well, I am going to have to create content myself.” Naccarato hired an illustrator to draw up a manual with 17 alternative sexual positions that would make sex not only easier but more pleasurable for little people. She called it, Heighten Your Sensuality & Intimacy: Innovative Techniques for the LP Body, a resource manual used in conjunction with her workshops. It addressed such topics as living with a disability, chronic illness, and injury; LGBTQ topics; and explicit details of techniques, sexual positions, and even personal hygiene. In addition, it tackled the broad topics of intimacy and sensuality, body-image issues, safe-sex resources, how to kiss, how to have non-intercourse sex, and how to simply embrace or caress another.
“I put together a booklet with all kinds of sexuality information that I thought was helpful, and it was about intimacy and sexuality and how to cherish yourself and your partner and how to bridge that gap,” she explains. “And it included terminology, words people weren’t using in their language. Genital words—vagina, penis, orgasm, all of these things.”
Naccarato is the first in her field to extensively study the sexual needs specific to the little-person community on the physical, emotional, and psychosocial level. “She is really a true pioneer in her own right,” says Dr. Patti Britton, a mentor to Naccarato and the co-founder of Sex Coach U. “She is the first person I know of in the little-people community who has had the courage and the wherewithal to design and implement programs and materials designed specifically for the little-people community around their specific sexual needs.”
Naccarato’s doctoral studies showed that among other issues, 20 percent of little people have trouble reaching their genitals with their own hands without using assistive devices. “There are tools,” she explains. “Dressing sticks, bottom wipers—there are tools to help in their everyday routine to help manage all of this. That is another [question I asked] when they couldn’t reach their genitals—‘How did you manage your sexuality as an adult?’ There was a gap that may occur in that development, where some maturity is not had.” Sixty-seven percent of the little people in Naccarato’s studies who could not reach their genitals felt that sex was very important. “This is so critical,” Naccarato explains, “because it tells me that little people do want more satisfaction in their sex life even if they are physically limited, and are receptive to change and education.”
According to the Little People of America website, there are roughly 200 types of medical dwarfism. A little person is usually 2 feet 8 inches to 4 feet 8 inches in height, but it varies. On average, they are 4 feet tall with a wide range of omedical conditions.
“When I speak regarding little people,” Naccarato says, “there are little people who don’t consider themselves disabled because they don’t have any really strong physical limitation—but most little people do. There is a variety, a spectrum.” Some have no medical limitations—they are just short. And some have more difficulty than others. Typical issues that affect sex and sexuality include arms that are too short to reach and touch one’s genitals, hip-rotation limitations that prevent the possibility of straddling, and severe spinal stenosis that can often result in paralysis from the waist down.
“I have been involved with Little People of America since I was 9 years old and I have attended numerous conferences and workshops,” Naccarato says. “[I’ve heard] everything under the sun about how we can better our lives and how we can help each other understand adaptive tips and things, but no one talks about sex. They will talk about marriage, they will talk about relationships, or parenting, or adopting, or having children—medical aspects, social aspects.”
“Take any medical issue, a disability of some sort, or some kind of spinal-cord injury–until recently, they [would not talk] to you about sex,” she laments. “If you go to a doctor and you have a secondary medical condition and you ask, ‘How can I adapt my life so I can maintain sexual health?’—that is not going to be addressed.”
Janna Dorren and Andrew Jacobs, both members of Little People of America, are a young couple that works closely with Naccarato. They both work at Universal Studios in Los Angeles in the scare maze dressed as Chucky, the killer doll. “It’s a lot of fun,” Jacobs says.
“It’s funny to see people’s reactions because you are coming at them from a low point and for some reason it is terrifying,” Dorren laughs. In addition to working in the scare maze, Jacobs considers music his main profession, and Dorren has hopes of going to school and becoming a stunt double for children.
“I have achondroplasia, the most common type of dwarfism,” Dorren explains in a phone interview.
According to Naccarato, 75 percent of people with dwarfism have this medical diagnosis, including Game of Thrones star Peter Dinklage. For Dorren, “No medication, surgeries, special needs, nothing. For my type of dwarfism, sex isn’t that difficult as long as you keep in shape and stay active.” Her physical limitations are few.
Jacobs, however, is a different story. “My type of dwarfism is diastrophoic,” he says. This is one of the most severe types of dwarfism, and he considers himself lucky to have a mild form of it. Still, it often comes with disfigured joints and a whole list of other issues. “It is harder. I am inflexible. Certain positions and certain sports are impossible,” he explains.
That is where Naccarato comes in. She works with these particularities to help couples with any body shape or size come together for sexual intimacy. In addition to the comprehensive workshop and manual basics, her website boasts a long list of tools in the shopping section, including her patented Love Bench, which Jacobs and Dorren are the models for; vibrators for women who can’t reach their genitals; and pillows with “fleshlights” imbedded inside for male masturbation when their arms are not long enough to reach their penis. She also sells other tools, such as condoms that are easier to put on for people with limited dexterity, and special pillows to assist in repositioning.
The inspiration for the Love Bench, according to Naccarato, is that “it’s very hard for people with disabilities to be on a flat mattress and hold themselves up with their arms and knees.” She and her life partner, actor and musician Michael Gogin, also a little person, came up with this concept: a piece of furniture like a low Japanese table. The knee can bend minimally and feet can stand on the floor, which is a few inches off the ground. “So he’s laying here and I’m on top of him, and it’s not a lot of stress on my hips and knees,” she says.
At the Little People of America conference, Naccarato pushed to have her own booth in the Expo, a trade show of adaptive products and resources for little people. She is the only one who offers products around sex. “My booth is an undertaking in itself to be able to present a booth at a little-people conference,” she says, “because it’s such a conservative family organization. I had to go through a lot of hoops to be able to do this … because I had adult content, mine had to be covered with a black curtain because there’s children there. It’s the only way.”
“I grew up in the eastern plains of Colorado as one of nine kids,” Dorren explains. She had six brothers and two sisters, all average size. “You definitely have to fend for yourself in my family. You don’t get babied.” She was expected to help care for her siblings, was homeschooled from a young age, and did not learn about sex until she was 17. “You don’t think a lot of things are possible,” she says. “My parents didn’t think it was possible for me to have sex. I am a human being and I have desires and I can do it. You just have to look into it more. Don’t give up on it.”
Before learning the ropes a new way, Dorren had to overcome major psychological obstacles that blocked her from believing she was able to engage sexually or to be in a relationship at all. “Being little people,” Janna says, “we have to learn to adapt to everything and do things our own way because the world is built for average-sized people. People who are less creative often give up.”
“You go by your own rules,” Jacobs adds.
“People with disabilities may have had an asexual upbringing and protective families that prevented growth,” Naccarato says. “Living under the attitude of the medical model from a lifetime of surgeries and insensitive doctors teaches people with disability that their body is broken, not sensual.” She works hard to show that little people can allow themselves sensuality, pleasure, and connection.
“Parents of an LP are usually more worried about bullies than focused on dressing their kids up for prom. The youth end up exploring on their own with very little mentoring,” explains Jody Yarborough, a Little People of America member and longtime friend of Naccarato. “Marylou supplies an age-appropriate environment for young people to come into a safe space, explore these feelings, and learn about their bodies. Hopefully that comes with self-acceptance, pride, and love.”
“She just teaches,” says Jacobs of Naccarato’s style. “She talks about how average people will go about getting intimate, and for little people, it is just a little different.”
“There is a lot said behind closed doors,” Dorren adds. “She is changing that. People are catching on to what she is doing.”
Naccarato’s next big project is a documentary, due out in 2015, on little people talking about their sexuality. She is nearly finished with her dissertation and she will join Dr. Britton’s faculty in 2015, leading an expert course on sexuality and disability.
“Life is short,” she says. “And so am I.”