We Are The Arc

Reposted from The Arc of Indiana, in tribute.

Celebrating the Life of Nanette Whightsel
June 27, 1943 – May 1, 2013

The Arc of Indiana staff and board, self-advocates throughout the state, and many, many friends of The Arc were greatly saddened by the news this week of the passing of Nanette Whightsel, former director of The Arc Network.

We first met Nanette when it was announced that New Castle State Developmental Center would close. Nanette’s daughter, Suzette, had lived there for many years; and at a family meeting to discuss the closing, Nanette approached John Dickerson, poked her finger in his chest, and declared, “Suzette cannot live outside of an institution!” Nanette would go on to be one of the state’s strongest advocates for community living, and through that advocacy, changed the lives of countless individuals with I/DD and their families.

Suzette, who developed severe, uncontrolled seizures at the age of three, lived at a time when children with disabilities were not allowed to go to public school. A time when Nanette was told she was not welcome at church because Suzette caused too much disruption. A time when there were no Medicaid Waivers to help families care for their loved ones at home. Nanette became involved with a local Arc chapter and began to advocate for people with I/DD to have those supports; but, without them, had to do so while Suzette eventually came to live at New Castle State Developmental Center. Upon its closing, Suzette’s life transformed. She purchased her own home, and with the support of a Medicaid Waiver continues to live there with two housemates.

Nanette came to work at The Arc, focusing her efforts on meeting with families throughout the state as Muscatatuck and then Fort Wayne State Developmental Center closed. Nanette shared her message as no one else could, talking parent to parent about their fears for their loved ones in making this transition. Nanette shared her personal story of moving from fear to hope to happiness in seeing how Suzette’s life was transformed.

Nanette then went on to build The Arc Network, a network of family and self-advocates throughout the state. Again, her work made a tremendous impact on families and individuals who would never know her, but who would benefit from her work.

No services are planned. Instead, you are asked to take a personal moment of reflection to remember Nanette.

Nanette, you will be greatly missed; but we know you would want us to focus, as you did, on celebrating life. From all who knew and loved you, “Here’s to you, Nanette!”

Photo: Nanette and Suzette Whightsel