No one told Shelly Baer how hard life with juvenile rheumatoid arthritis, or JA, would be. How isolated, afraid and confused she would feel, how especially difficult growing into womanhood would be.

How could they? She was 3 when the mysterious symptoms first appeared: a swollen knee, a mild rash, then a swollen finger, a fever. But, before long it was clear that arthritis was quietly disintegrating the cartilage in her bones and joints, making her wheelchair bound and disfigured by age 14.

“We had hoped it was isolated to a few joints, that it would go into remission,” says her mother, Sandy. “As a parent it was devastating to watch, unbelievably painful, trying to shield her from the stares, the whispers.” 

Instead of parties, boyfriends and school sports, Shelly's teenage years were marked by painful surgeries and long periods of recuperation. The toll on her self-esteem was incalculable.

“I never wanted to be in my body or look into a full-length mirror,” says Shelly, now 48, her petite, 4-foot, 11-inch tall, 100-pound body having endured 20 surgeries to date – including replacement of her knee and hip joints – along with countless hospital stays, X-rays, blood draws, therapy sessions, splints and shots.

“Most of my life I've only had a dim awareness of my physical stature: my short arms, my misshapen hands and legs, the way I walk, knowing I was different. I've had to detach from how I look in order to cope, to move on with my life.”

Something Was Missing

Despite her difficulties, Shelly found success in intellectual pursuits. She received her bachelor’s degree from the University of Miami in psychology and special education and her master’s degree at Yeshiva University’s Wurzweiler School of Social Work – and quickly grew to become an accomplished licensed clinical social worker committed to helping abused children, dysfunctional families and people with HIV.

But, something was missing. Finding self-acceptance was a struggle. With the help of a therapist, the support of her parents and two younger siblings, Shelly transitioned slowly. Her first date and kiss came at age 25 and her own apartment a year later.

Attending the Arthritis Foundation’s Juvenile Arthritis Conference turned her attention to advocacy in Washington, D.C, where she spoke with legislators about raising awareness and funding for research. Recognizing the lack of resources for the disabled in her own city, in 2001 Shelly used a stipend from the Dade Foundation to publish ACCESS Miami – a 36-page directory for the disabled. A fourth edition has just been published.

Next, it was time to address the identity-crushing experience of having a visible disability that had kept her in the shadows. No longer the shy, self-conscious girl of her youth, in 2006 at age 42 the auburn-haired dynamo with a melt-your-heart smile and sultry green eyes posed semi-nude for Uncensored Life: Raw Beauty – a highly-acclaimed visual arts exhibit that she co-created and produced with 10 photographers and 22 women with various disabilities to change public perception about beauty and disability. The exhibit was a fundraising event for the Center for Independent Living where she has been a board member for the past decade.

“It was the most empowering, liberating experience of my life. The first step in shedding my invisibility and in being a role model for others,” says Baer.

Although fiercely independent, daily life and work present challenges and mobility issues. Despite weekly injections of the biologic drug, Enbrel, and daily dosages of Voltaren to help reduce inflammation and keep the disease at bay, mornings can be painful. 

A Shared Passion

In 2009 Shelly found love. Planning to marry this year, she and her fiancé not only share the disease of arthritis but they share a passion for changing the way disabled people are viewed. 

Shelly also speaks to pediatric residents and medical students about body image, beauty, sexuality and dating for the disabled. She served on the planning committee for Ability Explosion 2010/11, a week-long symposium on Miami Beach to showcase the accomplishments of people with disabilities, and was among 11 women selected to receive the Red Cross Women’s Spectrum Award for her work with people with disabilities.

But, her greatest honor came last year when she spoke at the prestigious TEDx conference in Miami – the venerable nonprofit “Ideas Worth Spreading” speaker series founded in 1984. She spent months preparing her talk and videotaping her delivery, which, initially, was discouraging. “I hated how I looked and spoke, the gap between my teeth, the way I moved. It was hard to watch. But, the more I watched I came to realize, 'I'm not so bad.' 

Held September 13, 2011 in front of 500 people on the main stage of downtown Miami's New World Center, Shelly delivered her riveting six-minute talk, “The Beauty of Disability.” With her fiancé in the wings, family and friends in the audience, Shelly made her way into the spotlight. The little girl who had spent a lifetime in the shadows, who couldn't bear to see her reflection in the mirror, had come out. Big time. 

“I was terrified but wanted to get my voice, my message, my physical presence out there.” Shelly was the evening's only speaker to receive a standing ovation. 

“As I walked off stage I knew that I could do anything. It made me know that I have a strong message, that I'm here to expand minds and open hearts. That I had lived my whole life for this moment and found an expanded profession as a motivational speaker and educator.”

Her indomitable spirit and quest for inner liberation fulfilled, Shelly is committed to helping liberate others.

And, she's looking for the biggest stage and brightest light she can find.

Love 101: Enabling the Disabled

Continuing to help other disabled adults find personal liberation and love Shelly conducts one-on-one coaching and therapy groups based on the book, Calling in the One, by Catherine Woodward Thomas.

“It's eye-opening to hear the stereotypes people have about the disabled and the difficulty they have in finding partners. It's what inspired me to spread my message to as wide an audience as possible,” says Shelly.

The groups have raw, frank discussions about everything from sexual positioning to communication to creativity, improving body image and self-esteem.

“My fiancé are I are the ideal couple to showcase what we have learned and experienced and we look forward to launching a group for couples,” says Shelly. “Yes, dating is harder when you have a physical disability but the key is to not blame the disability,” says Shelly. “The truth is, most times we don't know why we are rejected.”

In addition to her expanded role as a motivational speaker, Shelly is penning her first memoir on dating for the disabled. You go, girl.

Click here to watch Shelly’s TEDx Talk at the Miami conference.