CHANGING THE WORLD
Janielle Fermaint was diagnosed with Cerebal Palsy when she was a year old. Because of damage to areas of the brain that control motor functions, Janielle can't use her arms or legs and her speech is difficult to understand. In medical terms she is a spastic quadriplegic but that's just her physical condition. It says nothing about the content of her soul.
Bright and intuitive beyond her years with a witty sense of humor that puts people at ease, Janielle is far more forgiving of society's limitations than we are of hers. She sees herself as a fourteen-year-old living with a disability which is not her Cerebral Palsy. It is how the world and the people living in it view and treat her.
I came to know Janielle because her mother Fran and I have been friends since we were Janielle's age. We rarely see each other because Fran has little time for herself. She is Janielle's lifeline and constant companion. This selfless mother who dedicates her every waking moment to her daughter's most intimate physical needs must also teach Janielle how to survive in an intolerant society.
Imagine if you had to investigate every place you intend to visit to
find out if it is wheelchair accessible and, if so, will you be welcome.
Janielle wants to experience what it's like to go ice-skating. She
doesn't want to sit behind the glass and watch everyone else skate. She
wants to be out there in her chair, on the ice with the rest of
I met with the leader of a group of skaters called the Ice Angels who
suggested that Janielle be part of their upcoming performance at The
Chelsea Piers. We began to work together to incorporate Janielle as the
centerpiece of their show. Capezio donated a costume for Janielle. We
chose R. Kelly's moving inspirational ballad, "I Believe I Can Fly" as
the music and we planned to adorn Janielle's wheelchair with large
angel-like wings. The attention was overwhelming for Janielle and her
tears of joy left an indelible mark on my soul. When asked what she
wanted the audience to know about her she replied,
Janielle would finally have her moment on the ice. For two minutes and ten seconds she would be the star of the show, sending an inspirational message to the audience. Her motionless chair against the backdrop of the skaters and R. Kelly's powerful lyrics would leave an extraordinary impact on everyone present. For once people would focus on her instead of her disability. There were phone calls, rehearsals and lots of anticipation and excitement, but three days before the performance the show was cancelled.
There are several reasons this unfortunate scenario occurred but what it boiled down to was the fear of liability. Janielle was penalized for our inability as a society to trust each other.
The thought of disappointing Janielle was devastating. I called Carol Olsen, Manager of the Rockefeller Center Ice Skating Rink, who kindly agreed to provide Janielle and her family access to the Rockefeller Center rink for a few minutes just before the session opens to the public. There won't be a show with the Ice Angels and Janielle won't be sending her inspiring message. However, our inability to realize the original result has created something far more powerful.
This experience has inspired Janielle to create her own website and to become an activist for other kids in wheelchairs. She is committed to seeing that people living with disabilities are treated equally. Perhaps a generous person or corporation will consider the possibility of sponsoring Janielle's effort by renting an ice rink for a full session so children constrained to wheelchairs can experience the same joy as other children.
We all want to be accepted for who we are and Janielle is no different. If we choose to ignore Janielle, or any other disabled person, because of their physical limitations we deprive ourselves of their gifts and their contributions to our society.
Regardless of the disappointments Janielle is faced with every day, she
This is not the end but the beginning of a story still to be written. Who Janielle is as the cause of her life is the real story. She is making a difference in the world without leaving her wheelchair.