I first was introduced to Zazel when she was a panelist on a webinar during COVID and from the moment she first spoke, her vibrancy and positive attitude took over the stage. A magnetic force of positivity, Zazel has overcome some major obstacles and I have no doubt that her zest for life helped her overcome these challenges. We are thrilled to share her story with you now.
Zazel Chavah O'Garra was born in Montserrat, West Indies and was raised in New York, USA. From a young age she had dreamed of becoming a dancer, and with the encouragement of her family, she took up dance lessons at the Ruth Williams Dance Studio in Harlem, NYC. She studied performance and dance at High School, winning scholarships and awards along the way for her talent. Her love of the Arts led Zazel to receive a Bachelor of Arts degree from the University of Michigan and Empire State College.
Zazels career grew from strength to strength and she performed in musical theatre productions off Broadway and all around the world. She became a Presidential Arts Scholar and performed with the Mark Dendy Dance Company and Alvin Ailey Wksp II. Zazel overcame the stereotypes and hurdles within the notoriously competitive dance industry. On one occasion she was told that her West Indian figure was not suitable for leading roles! She proved the industry wrong and forged a hugely successful career in dance. She also worked as a model and featured in many high profile fashion campaigns.
In 2001, Zazel began to feel unwell. She first developed severe headaches followed by chills down her right arm. She dismissed the symptoms, taking over-the-counter pain relief to help manage her pain. One day, Zazel realised that her handwriting had changed and she was no longer able to sign her name. She visited the doctors for blood tests but all results came back clear.
Not long after, a tremendous fatigue hit Zazel and she struggled to carry out her daily tasks. Again after visiting the doctor and after many blood tests, frustratingly all results came back negative. She tried visiting her gynecologist in the hope of being diagnosed with hormonal issues or thyroid issues, but again, the same results showed in her blood tests. Zazel continued like this for almost two years, repeatedly being discharged from the doctors care.
One afternoon, as she sat in a chair at work a feeling like an electric surge ran from her stomach to her head, rendering her completely unable to speak or move. This lasted for around one minute and it frightened her. The next day while having lunch with a friend, it happened again. Zazel booked an appointment with a specialist who took a variety of blood tests. Yet again she was told that there was nothing wrong and the blood results were negative.
In 2003, while visiting her sister in West Orange, New Jersey, Zazel asked her family to take her to the hospital as she was feeling unwell. Although all blood tests came back negative, the doctor requested an MRI when Zazel mentioned to the doctor that she felt dizzy. The doctor told Zazel that she had a large benign meningioma on her brain and this tumor had grown to 4.5 cm in size. The resident neurologist explained that the tumor was in a difficult position to operate on and that they would be unable to remove the whole tumor, and as well as this, it was likely that she would be completely paralyzed and blind after the procedure.
According to the Mayo Clinic,meningioma are a tumor that develops in the meninges, the membranes that surround the brain and spinal cord. Meningioma is the most common type of tumor that forms in the head. Meningioma are slow growing and although they can grown for years with no symptoms, they can cause severe disability due to impacting the surrounding brain tissue and nerves. They can occur at any age and do not always need immediate treatment, some can be monitored over time.
She proceeded with the operation just 5 days later, all the while putting on a brave face so she would not upset her elderly mother. The operation was 12 long hours. Shortly after waking up, Zazel requested a mirror as her first thought was to check if her face had been paralysed. Thankfully, although very swollen her face had not been affected. She credits the Screen Actors Guild for their unrelenting support in assisting with insurance for the hospital procedures, without their support she would have been in a deeply stressful situation.
Zazel initially had complete paralysis in her body, suffered cognitive loss and had a slight speech impediment. She underwent extensive rehabilitation - physical, occupational and speech therapies at the Kessler Institute for Rehabilitation, New Jersey and New York University Rusk Medical Centre and she made huge progress on her road to recovery.”I made the therapists work hard!” she said. Her drive and determination to recover made her test her physical boundaries in every session.
One day, Zazel noticed that she was able to move her right thumb and she screamed with delight. “Never take your mobility for granted” she said. Immediately she called her sister and how the tears of relief and happiness flowed! From that day forward more movement returned and incredibly, Zazel now has full mobility apart from one foot. With the use of an AFO (Ankle Foot Orthosis) brace, she is now able to walk with a limp.
After the surgery, Zazel needed to retrain for a new career as she believed that she was no longer able to dance. She trained as a social worker and teaching artist for disabled children and a chance encounter with a colleague who had undergone a similar procedure brought Zazel to the attention of the Brain Tumor Foundation. They convinced her to dance on stage for over 500 people at their annual awareness day.
Initially hesitant and with nagging doubts about her ability to dance, Zazel was convinced to take to the stage. As soon as the music played she felt the urge to move and be free. “The dance came from my soul, from my spirit… It was then I knew that dance was inside of me, it had never left me ...and I gave the performance of my life” she said. The performance received a standing ovation . “Then and there I knew that dance was going to be with me forever” she said.
Zazel returned to dance classes at her former dance school in New York, but as the dance teachers had no experience of how to deal with her physical limitations, Zazel felt misunderstood, excluded and unwelcome. It was this experience that drove Zazel to found the ZCO/DANCEPROJECT, a physically integrated dance company which encourages people of various abilities to partake in dance classes. “I found that many people with physical limitations had not experienced the world of dance. I needed to bring the joy of movement to people with disabilities” she said.
The ZCO/DANCEPROJECT is a physically integrated dance company whose goal is to create performances that are witty, soulful, intelligent, powerful and intriguing. ZCODP seeks to encourage the integration and inclusion of people with disabilities in dance and in society, to present new, exciting, challenging, and inspiring contemporary dance performances to the widest possible audience.
The company works with trained choreographers who have experience with disabilities and they have performed in such notable events as the Disability Pride Parade in NYC and the Women's National Basketball Association halftime show in Madison Square Garden to name but a few.
Aside from her work with the dance company, Zazel also worked as a movement coach for the tv show “As The World Turns”. She has continued to be a passionate disability advocate, actor, runway model, and has featured on the cover of Essence magazine on two occasions as well as many other print magazines. She has also appeared on TV advertisements nationally as well as being a voice over artist for several radio and television advertisements.
Her recent performances include: This/Ability at Samuel Beckett Theatre, Theatre Breaking Through Barriers, Undesirable Elements at the Lincoln Center, Bodystorming Access at the Cooper Hewitt Museum, Respectability at Positive Exposure 109, Judson Memorial Church, Secret Histories at the NYPL Lincoln Center and Imagining an Accessible NYC at The Green Space.
Zazel ‘s main goal is to teach and encourage people living with disabilities and long term illness to explore their creativity and self-expression, help them build a sense of self-esteem and self-reliance, and provide them with opportunities for community recognition and acclaim. She is the recipient of the VSA John F. Kennedy National Teaching Artist fellowship and was also named the inaugural member of the White House Disability Liaison in 2014.
“Art is therapeutic, the world without art would be boring says Zazel, “We have to have art we have to have creativity and with art we can turn our setbacks into comebacks!”
Last week, before the groups brilliant performance at the Abilities Expo, I was lucky enough to ask Zazel some questions about her experiences.
It is such a pleasure to have this opportunity to share your story.
What would you say to someone who has just gone through or is about to through brain surgery? Any tips?
My advice is to always get a second/third opinion from a doctor. You want to have surgery from someone you trust and feel comfortable with. The brain takes it time to heal. You (might) have long term effects. I always tell people you can’t compete with the person you were before surgery.
After your operation and during your recovery, was there any type of technology or clothing that you felt like you could not have done without?
As a dancer/performing artist, I packed leggings, leotards, t-shirts and sweatshirts, since I knew I was entering rehab where I was going to experience an endless amount of physical and occupational therapy. I needed clothes which were comfortable. I listened to music and meditated to calm my spirit and rid any tension/stress in my body.
When you were recovering did you feel that clothing or style empowered you and gave you more confidence?
I felt high fashion and style represented me. If I looked good, I felt good, it gave me more confidence to continue on the journey of healing and recuperation.
How would you describe your own style? And is there a piece of clothing you own and love that makes you feel the happiest?
I like creative, eclectic, hip-funky, sophisticated clothing. Clothes which make me look ultra-fem and sexy. I dress in clothes which are streamlined, refined, modern and tailored. I like to walk into a room and be noticed. I purchased a long flowing pastel dress, with a plunging neck designed by Rachel Ray. The dress accentuates my neck line and the colors are inviting. I love wearing it during the summer.
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