Arlene Susan and her twin brother Harold Lewis were born April 1, 1945, to Karl and Martha Kohn in New York City. Arlene was born with Down syndrome. Her older sister, Lenore Kohn Damrauer, and her twin, Harold, both earned BS degrees in chemistry from the University of Michigan.
When Arlene was 8 years old, she was enrolled at St. Colleta by the Sea school in Hanover, Massachusetts. St. Colleta was a residential facility operated by the Sisters of St. Francis of Assisi for developmentally and intellectually challenged children up to age 16. There, Arlene received superb academic and life skills training. When she turned 16, Arlene moved to Letchworth Village in Thiells, New York, a large residential community for individuals with intellectual disabilities. Over the years, the approach to these types of communities shifted, and individuals began moving into community homes with smaller numbers of residents. Arlene was 42 when she moved to a community home in Spring Valley, New York. She lived as family with 11 other women and their caregivers until her death in May 2016.
For most of Arlene’s adult life, she worked at a Rockland County, New York, ARC facility where she packaged industrial fasteners for commercial sale. Her group home was central to her life, and she was surrounded by loving housemates and healthcare providers. Arlene, in turn, contributed her part to daily life at home.
Arlene was not a silent person; she never hesitated to express her needs and wants clearly. She was kind and exhibited the importance of friendship. Arlene could remember names and incidents long forgotten by others and would always best her brother in their animal-naming game. Her smile was magnificent, her love unconditional and boundless, her hugs penetrating and poignant, and her ability to barter harkened back to her father’s skills. Arlene, by her very presence and actions, could powerfully redirect her family toward what was real and what was important. She contributed mightily to the lives of those around her in ways that could not have been imagined when Arlene was born.
The Kohn Charitable Trust has established the Arlene Susan Kohn Professorship of Social Policy to honor her and to underscore the critical importance of advocacy and support for those with disabilities. In this way, we seek to add her voice to the national dialogue for those whose voices may be muted but whose rights are essential to keeping the national fabric whole and vibrant.
Written by Dr. Harold and Carol Kohn, Directors Kohn Charitable Trust