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Spring 2019

By Shawn Piantoni, Professional Photographer

Abstract: A photographer describes her work in the field of DeafBlindness and the experience of doing a photo-shoot with Jayana, a young woman with albinism.

Keywords: Family Wisdom, visual impairment, photography, albinism

I have worked in the field of sensory disabilities starting when I was 12, as a volunteer at Easter Seals. After that, I worked as an Independent Living Specialist, Interpreter, Job Coach, and Technical Assistant Specialist with the The National Technical Assistance Consortium for Children and Young Adults who are Deaf-Blind (NTAC, which is now known as National Center for Deaf-Blindness) until I received my doctorate in Special Education and Sensory Disabilities in 2010. I now live in the Bahamas and travel internationally as a photographer. I am interested in working with families who have children with disabilities to capture the beauty they see in their children. I remember attending family workshops when I was with NTAC and the parents talking about a lack of photographs of children with sensory disabilities. This has always stayed with me and I would love to give back to the community I love!

In February, I reached out to both Edgenie Bellah, Family Engagement with the Texas DeafBlind Project, and Kathi Garza, a TVI with the Short Term Programs at TSBVI, with an opportunity for an individual with Albinism to be photographed by the award winning and internationally recognized Dutch photographer, Gemmy Woud-Binnendijk, as well as 16 other professional photographers from around the United States. As I am a long-time educator and advocate for children with sensory disabilities as well as a photographer, I wanted this to be more than a photo-shoot. I felt this could be a unique opportunity to contribute to the awareness and understanding about individuals who have albinism, using an art form that Gemmy and I hold deep in our hearts. Gemmy has photographed both children and adults with albinism before. I encourage you to view her work at https://www.gemmywoudbinnendijk.com.

We were thrilled when Jayana’s mom Angela responded and said they could meet us at Railyard Studio, owned by David Parish, in El Paso, Texas.

When Jayana arrived at the studio, her nervousness was natural considering that it was her first time to model! She sat down with the makeup artist, Nadia Veenhoff, and was transformed into a little girl straight out of an old master’s style painting. She became a confident young lady in front of the cameras, showing such beauty and natural talent. It was wonderful to watch her glowing smile! I am very pleased to say that Jayana’s images have since been published internationally in Practical Photography magazines as well as international digital magazines.

Professional photograph of Jayana by Shawn Piantoni. Jayana stands in an off-white gown on a wood floor in front of a plain, off-white wall.
Professional photograph of Jayana by Shawn Piantoni. Jayana stands in an off-white gown on a wood floor in front of a plain, off-white wall.

Jayana and Angela’s willingness to spend two days with us reached the outcome we had hoped for. Jayana had a unique and memorable experience. Her participation has encouraged photographers and others to ask questions about albinism, as well as provided us with a forum to educate other photographers regarding how to photograph individuals with albinism without causing harm. Due to the lack of pigment in the eyes, any flash photography can be extremely harsh on the eyes. This is very important to understand. We asked Jayana to communicate with us when she was comfortable or uncomfortable. The picture I took of Jayana is in natural light. She is looking away from the light and not directly towards it. This was also the case when using studio lights.

We are grateful to everyone in Texas who helped spread the word and ultimately connected us with Jayana and her family! Jayana modeled all day with my daughter and I think they struck up quite a friendship out of their experience. We look forward to future get-togethers and photoshoots. I am also certain Jayana’s talent will bring her more opportunities to model!