I remember the first time I learned about deaf- blindness. I was attending my first Project Director’s meeting in Washington, D.C. as a Project Director in a Television Access grant from the U.S. Office of Special Education- OSEP almost 15 year ago. I was terrified, trying to open up space in my brain so that I could absorb as much information as I could in this new environment. I had recently moved to Florida from Colombia, where I was born, and where I had begun my work in media accessibility almost 20 years ago. I was motivated by my own hearing disability, and my background in engineering, specifically my years working as a broadcast engineer. I travelled to the U.S with the goal of supporting Spanish speakers with sensory disabilities, like me, and address their need for access to media. Never before had I heard anything about deaf-blindness until that day.
There were con-current sessions running at the same time of the main meeting. I was given the opportunity to attend the one that most appealed to me. I must clarify that my choice was based solely on the presenter: a Latina mother with a deaf-blind daughter. More than an interest in the field, I was moved by a fellow Spanish speaking woman, who was a mother of a child with disabilities in a country that was not her own.
What I learned that day, would have a life-long impact in my professional development and how I started to look at the world. I learned that day, that doctors had more than once suggested to “spare her little girl the suffering” they advised against saving her when she had medical complications as a baby. “I decided to take care of her for good… I would face whatever was to come…” said this mother in a strong and firm voice. The little girl was deaf, had limited vision as well as multiple mobility issues. The mother’s speech was incredibly powerful. She shared how her husband abandoned them, how she had to take her girl to work for years, how she overcame her language barrier to make sure her daughter received the resources and tools to have a happy, fulfilling life. That was her ultimate goal.
What a woman! Serene, confident, willing to share her knowledge and expertise with whoever needed her guidance. There was no pity in her voice but a profound inspiration and respect for her daughter and her own growth from zero to success.
From that day forward I have been lucky enough to meet deaf blind individuals from diverse backgrounds, ages, and abilities. I have listened and learned about their needs, their lives and their interests. We have become friends and colleagues, and I now realize the power of that woman I met 15 years ago. I now understand how she has been able to support her daughter and so many other families among this low incidence group: Community. The enormous sense of commitment to help each other is unparalleled. The love that permeates throughout the deaf- blind community, including individuals, teachers, families, service providers, interveners, and everyone related to the field is astounding. It is undoubtedly the most devoted and generous community I have ever met.
I am so proud to present today, on behalf of Dicapta Foundation’s Board of Directors and all our team, and as part of the celebration of the international day of deaf- blindness, GoCC4All, an app to support the need for access to emergency information and TV. Funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90IFDV0004-01-00) we, at Dicapta Foundation have been working in a collaboration with the Helen Keller National Center- HKNC and the University Carlos III of Madrid-UC3M for almost three years to make this happen. A million thanks goes to the deaf-blind participants for their support and feedback in this iterative process, and also thanks FEMA for giving us access to their national alert system, with the following organizations as part of our Advisory Committee: the National Center on Deaf-Blindness, the Perkins National Deaf-Blind Equipment Distribution Program (iCanConnect), the Florida and Virgin Islands (FAVI) Deaf-Blind Collaborative, Lighthouse Central Florida and DeafBlind Citizens in Action, GoCC4All is in your hands now, I really hope it makes a difference in our field.