​

In Memory of 

​Ben

​His Name was...

​By Terry Kozloff

​A child was born in 1989 deaf and blind. He was profoundly loved by his mother and became connected to the world through her love. He was blind but learned to navigate his surroundings in his wheelchair. He was deaf but laughed at jokes and the laughter of others. He loved being outside in the rain and the icy feel of the snow. He loved the water most of all. 

His mother's love infected others and many learned to love him as well. So much so, that professors from universities across Southern and Northern California, hard of hearing specialists, and teachers of the visually impaired, principals, and others came together to teach the child's world that he could be included in his neighborhood school in the regular classroom. This was a time 3 decades ago when inclusion was not an option for a child like this.

The planning and the love for this child created a model inclusion program that infected an entire school district. His classmates were taught co-active sign language so they could communicate with their fellow classmate and then teach others. He let his friends try his wheelchair and learn about his hearing aids, contact lenses, audio listening device, and how he used technology to learn. They learned about contrast, light and dark and how that helps some people to learn. He was so loved that when this beautiful, deaf-blind child lost his hearing aids in a large area of grass at the elementary school, the entire class learned how to organize a search and rescue team. The child that found his hearing aids was a celebrated hero by the whole class that day. What a good day that was. 

This child was so loved; parents were requesting the principal assign their child to the same class as the beloved deaf-blind child.

The deaf-blind child was a teacher of humanity, even though humanity was not in every child's home life. He taught them how to celebrate differences, the use of assistive technology, and assistive listening devices. His classmates were so proud of knowing and being a part of this child's life, they organized Disability Awareness events for every child in the school to experience how people with a variety of disabilities successfully live. The deaf-blind child's friends taught others the many unique ways there are of experiencing the world and communicating. I think it changed who those children chose to become as adults.

In the deaf-blind child's 7th grade drama class the teacher announced an assignment. The students were to break out into small groups and create a skit depicting the "Morning Sun Rising." At the completion of each group's assignment, there was no question which skit was the most creative. The deaf-blind child in his wheelchair that powered up from sitting to standing, was the "Morning Sun Rising," as students featured him in his wheelchair as it rose up like the morning sun. 

The Child's life had an influence in the deinstitutionalization of thousands of people from 100-year old institutions. Ultimately, the institutions were replaced with homes in communities in regular neighborhoods. 

The life of the deaf and blind child was the subject of keynote speeches in states across the United States. His life was taught in classrooms in colleges and universities in California and throughout the United States. His life was a subject in professional journals and in newspapers, magazines, newsletters, and in discussions everywhere. He showed up at hearings at his State Capitol and participated in demonstrations to show our legislators that people mattered and his life's inspiration was a major part of saving the developmental services system millions of dollars when it was on the chopping block. 

His life and the advocacy his life inspired brought millions of dollars of federal funding to aid in accessing services people needed to live and to thrive through the Community Imperative Conference in 2001. Many people, their families, and employees throughout the State of California have benefitted from the life of this child. 

As an adult, the child was able to live in his own home for 11 years, in the home his parents purchased for him, however, as his body grew and changed, he could no longer be supported and cared for in his home. In the last year of his life, he moved to a home created by the deinstitutionalization of people. It was a regular home in a neighborhood with a full time nurse and staff; a concept he helped inspire.

In the last home he lived in he was no longer loved. His mother and stepfather would drive 90 miles to visit him often and found that he had no window coverings in his room, it was hotter inside his room than it was outside. His room was filthy, much of his furniture and clothes have been shoved in the garage in disrepair. Parts of his suction machine lay on the dirty floor, and clothes that didn't belong to him hung in the closet. 

One day his mother was visiting, the nurse forgot to feed him through his feeding tube, and she had to call after the nurse as she was walking out the door. His parents would vacuum and clean his room, find where furniture had been dumped in the garage and put it back together. They had to find his clothes, sheets and towels, clean his suction machine and train staff how to use his cpap machine so he didn't die during sleep. Each time his mother visited his mouth was full of gunk because he could no longer drink or eat by mouth. She would clean his mouth and asked the staff to please take regular care, but she didn't think they did or would because it was the same, each time she visited. She had no known choice but to walk out the door. She would nearly collapse before she would get to her car.

The child died there at that home, was revived and died again in the hospital shortly after. The nurse that oversaw the home the child lived in met the child's mother at the hospital and said, "Terry, we have done a lot for Ben." This was said as her child lay feet away on life support, his heart barely working at all, and his respiration almost non-existent. No words of compassion or interest in the life that once was. I wish I had said, "He has done more for you than you ever did for him." Ah, but it probably wouldn't have mattered anyway.

Ben was always about you, me, people with and without disabilities, families, and everyone that needed him. In the end, he was just someone who needed us and we failed him.

​

​​Ben

​September 20, 1989 to October 4, 2021