So we got thrown into the deep end like so many other families who in an instant are swept into the experience of disability—a child, a family member, or oneself. One moment you are in one universe and then the next you find yourself in another. Could happen at birth, after an injury or as a consequence of aging but there you are totally unprepared without even the words to explain what you are feeling.
It’s a much longer story but for now let’s stick to technology. As we reassembled our lives piece by piece it was technology that became the door for me to reach out to our daughter and find a way inside—a stable footing to be a father and have a connection with Eva.
As most mothers do, my wife had an inside track. Her bond with Eva was immediate and deep. For me, I struggled early on trying to find my way across a landscape without language. Unable to know what Eva understood, what she felt, what she wanted, I found myself in a land of trial and mostly error. As with most disabilities, to say one has cerebral palsy is like saying one lives in Los Angeles. It says something but not much of anything. So what did cerebral palsy mean for Eva and our family? What universe had we landed in and, for that matter, what dimension?
The door opened at the UCLA Early Intervention Program for Children with Special Needs. In addition to all the nurturing the program provided it was the technology that blew the doors wide open. As part of a research study, Eva was controlling a personal computer with her tiny hand balled-up in a fist. It was an AHA-MOMENT when the future immediately became clear. Actually, it wasn’t so much an AHA-MOMENT as a CAUSE-AND-EFFECT one. Eva immediately understood the implications as she made the clown dance or the car move or the balloon fly across the screen. She was in control now and nothing would get in her way.
So back to the history but context matters. After Eva requested a computer for her third birthday the task at hand was: What computer? What specialized or modified equipment? What software? This was totally new territory for someone whose experience with technology topped-off at an IBM Selectric typewriter. I actually walked into an Apple dealer and started explaining to the salesman about my daughter, about cerebral palsy and about finding a computer that didn't require someone to use their hands. The salesman politely excused himself and never came back. This was going to be harder than I thought.
I asked Eva’s teachers and therapists about what I needed and how to get started only to discover that they were really not much more helpful then the Apple salesman. It took me years to understand that my daughter’s needs were so specific and so individualized that even those talented teachers and therapists weren’t sure themselves. With Eva—as with so many people with disabilities—a quarter of an inch to the right or a quarter of an inch to the left can make all the difference. With assistive technology there can be hundreds of variables and finding the right solution can often require multiple trials and lots of time. One step forward, two steps back—par for the course when matching technology and disability.
This was about 1986 and then someone told me about a conference being held at California State University Northridge. It was CSUN’s second annual Technology for Persons with Disabilities Conference and it was there that I first met Jackie Brand and Mary Lester. OMG, I remember these two women so full of energy and purpose, moving with a vision I barely understood. From the Bay Area and the Disabled Children’s Computer Group (DCCG), they told me about the National Special Education Alliance—a growing network of nonprofit centers popping up all over the country to share information and experiences about using technology to support children, students and people with disabilities. Soon the network would become the Alliance for Technology Access (ATA).
This is actually where the story begins...