By Jennifer Longdon
Photos by Loren Worthington and Jerry O’Connor
It was an article in the Huffington Post that jumpstarted Josette Ulibarri’s modeling career. In February 2015, she spotted a piece detailing an art project underway by New York photographer Victoria Janashvili. The art photography book, “Curves,” is an exploration of the unconventional standards of beauty and one’s acceptance of their own body image. Ulibarri noticed that none of the women reflected her self-image as a woman with a disability. She contacted Janashvili and two weeks later she was in the photographer’s New York studio being photographed for the book. She wrote: “We’re all so beautiful.” Ulibarri speaks with an inner confidence rare in any woman regardless of ability; so her pursuit of modeling opportunities is completely unremarkable.
Ulibarri, 30, was born in New Mexico. Delivered at home by a midwife, it was at that moment her parents learned she was born with tetraphocomelia (also known as Roberts syndrome). She was born with partial hands and feet attached to shortened limbs.
“The doctors told my parents they saw my arms and legs moving in the ultrasound a few weeks before I was born. This was a complete surprise.” Her grandmother, a nurse at the local small-town hospital, bundled the infant Josette up and took her for a full examination. “They learned I was healthy, I just had short limbs.”
Ulibarri had the childhood that one might have in any small town in the mid-80s. “People asked my mother ‘why do you keep her?’ But she’d say, ‘She’s normal, there’s nothing wrong with her.’ This was just my life; my mother never allowed me to be treated differently.” She grew up in a rough-and-tumble environment with two older brothers who never saw her as fragile. “My mom used to say, ‘If I don’t see you trying, I’m not going to help you.’ I learned to speak up for myself.”
Ulibarri steers her power wheelchair with the two well-manicured toes of her left foot. She uses her right arm to manipulate objects like a spoon or her phone. Her gaze is steady and she emanates warmth and confidence as she tells her story and makes it clear that nothing is off the record.
When Ulibarri was five years old, her father died. His absence still casts a shadow. At 14, her family moved to Arizona. Since that time, she’s gone to school and is currently employed in a job that she cannot discuss, as her anonymity is crucial to her work. This undercover operative makes her living ensuring the dignity and safety of other people with disabilities. “I keep doing this job because I have a voice and I can speak up and I’m not afraid.”
My Advocacy Voice
It’s easy to mistake Ulibarri’s quietness for shyness, but she’s no shrinking violet. Voicing her needs and advocating for herself and others is a recurring theme in her life. She engages in her advocacy with a quietly measured and steady tone devoid of rancor; which makes it all the more surprising when she heatedly discusses her frustrations about becoming a licensed driver.
Ulibarri was 18 when she first went to an adaptive driving specialist. “He didn’t paint a rosy picture,” Ulibarri reflects. “The process and cost seemed insurmountable.” As a woman of deep faith, Ulibarri prayed and believed those prayers would be answered. She continued onward, relying on her mother and paratransit to get where she needed to go until finally, she worked up the courage to discuss driving as a goal with her Vocational Rehabilitation counselor. She went for a driving evaluation and started in a trainer. “It was super scary. It was just a joystick that did everything– gas, brake, steering… it took some time to learn.”
The sole flash of anger was as Ulibarri recounted her experience with adaptive driver’s training and vehicle modifications. “My voice wasn’t heard. People made decisions for me.” She had her heart set on a truck that fit her price range and lifestyle, but her driving specialist nixed the idea, telling her that no one had ever adapted that vehicle for someone with complex needs. Ulibarri recalls telling him “Ok, let’s make history.” She felt she was pushed into an adapted mini-van. “I’ve come to love it. But I wanted to be listened to, not stuck in what they wanted me to drive. Why didn’t I get a say in my choice?” She drives her van by controlling steering, gas and brakes with a joystick she operates with the two toes of her left foot. All the secondary controls – lights, temperature, turn signals, wipers – are controlled from an iPad that she operates with her right arm.
“Tell me I can’t; then I want to do it more.”
It took five trips to the DMV to get her license. Every trip seemingly involved another person asking for another medical review or more driver’s training records. On her last trip, they issued a permit instead of a driver’s license, so she called the office of medical review to sort out the requirements once and for all. When the conversation was over, her office worker failed to properly hang up the phone. Josette listened as the office staff ridiculed her without realizing she was still on the phone. “The lady said ‘she thinks we’re going to go above and beyond for her.’ The whole office laughed. I hung up and called right back; when she answered I said “I heard everything you said.” The office worker hung up, Ulibarri believes out of embarrassment. The next day the unit supervisor contacted Ulibarri to apologize and urged her to come to the office for her paperwork. “It was still a permit.” Ulibarri continued to advocate for herself and ultimately received her unrestricted driver’s license.
She celebrated by driving her mother and daughter to Rocky Point, Mexico, where they spent a week at a friend’s condo, horseback riding and enjoying the beach before driving home. She has put more than 4,000 miles on her van so far. Josette never stays still for long.
Life on the Go
During this time, photographer Janashvili’s book was released in July 2015; a mere four months after Ulibarri read that HuffPo article. Josette’s images were featured in the international press tour; everywhere from the New York Post to the national broadcast “Entertainment Tonight” to the largest newspaper in Italy. Janashvili says the reaction to the book and especially Josette’s participation has been “enormous.”
“When Josette first contacted me, I was stunned. I had not even thought about disability as a face of unconventional beauty. But, I immediately embraced the idea. Josette flew to New York. We had so much fun together. I think I’m Josette’s biggest fan.” Janashvili found that her time with Josette had so altered her personal definition of beauty that she sought out model Jillian Mercado (well known for her Diesel ads) for inclusion. Perhaps the most revealing experience for Janashvili was after the photo shoot. She recounts, “We wanted to go have a nice dinner to celebrate. The restaurant was only 15 blocks away. If we could hop in a cab, we would have been there in minutes. But, we had to take the subway. We had to keep going up and down to find accessible paths. It took more than 40 minutes!”
Ulibarri loves to travel and she’s always planning her next trip.
She fell in love with New York City and its hustle and bustle when her boyfriend of three years, Luis Perez, took her there for the Macy’s Thanksgiving Day parade.
“We decided to do Thanksgiving with my family so she could meet them and she had never been to New York City.” Says Perez, a New Jersey Realtor, “The day of the parade we were supposed to have reserved seats in a handicap accessible area that I had called for months ahead of time. With the confusing blockades and closures, we ended up in a spot that was almost impossible to get to where we needed to be before the parade started. An awesome NYPD officer let us through into a prime location front and center. It was an amazing experience to be right in the middle of it all. We headed home and she met my family and the rest is history.” The couple’s relationship continues to deepen.
“Our attraction was immediate” Says Perez, “A lot of people judge and assume just from looking at her she must be helpless and can’t do anything for herself. Little do they know she can drive and I’ve seen her handle a knife to make homemade salsa with a chef’s precision. She’s truly limitless although a person’s first reaction is to think the exact opposite.”
Ulibarri counts reading and swimming as favorite pastimes while noting her next advocacy goal is solving an access issue at her pool. She continues to model for painting and art photography and plans to sit for award-winning muralist Francisco Garcia when they both find time.
Still, with all she’s doing, there’s time for more. When she’s not playing mommy taxi and getting Jaira, her 9-year old daughter, from gifted classes to her dance lessons, she’s studying theology through her church and considering training as a life coach. “We couldn’t keep this schedule if we relied on Dial-A-Ride.” And that’s true, many days there is just a slim half hour between classes for her or Jaira.
One winds up both exhausted and excited after time with Josette. Her fierce energy and her fearless plans for her next adventure are breathtaking. She’s never believed in limits, never believed she couldn’t. “Tell me I can’t; then I want to do it more.”
Josette Ulibarri truly embodies advocacy in action, exercising her voice and refusing to take “no” for an answer.
Jennifer Longdon is known to drink too much coffee, ask too many questions and then write about it. She has served on numerous Boards and Commissions focused on disability advocacy including the Phoenix Mayor’s Commission on Disability Issues, the Statewide Independent Living Council and the Christopher and Dana Reeve Foundation Public Impact Panel. Jen has a T-4 spinal cord injury and uses a wheelchair full time. She’s a regular contributor to LivAbility.