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Picturing Disability

by Donna Fellman

Twenty years ago, in August 1991, when my children were six, four, and 11 months old, I was diagnosed with MS. My youngest child, Kaija, was taking her first steps while I was losing the ability to walk. I used a cane, but soon needed crutches, and by the time Kaija was two, I was using a wheelchair most of the time.

Last year, in a college photography class, Kaija was given the assignment to do a photographic essay. She chose “Disability” as the subject and framed images that showed her development as a little girl with portrayals showing the progression of my disability. There is a photo of her little shoes with my cane, representing her learning to walk alongside my difficulty walking. Included is a sequence of shoes to illustrate her growing up, my mobility aids, our legs together, her self-portrait in a wheelchair, and other images depicting her memories and perceptions of disability.

We talked about what it was like for her and her brothers growing up. Looking at her little red shoes, I said to Kaija that I had never held her hand and walked with her. Her reply: “I always had your lap.”

Donna Fellman lives in rural Maine.

Madeline Russell of Medford receives Mass. Family Caregiver Honor

Madeline Russell of Medford was recently honored by the Commonwealth of Massachusetts during Family Caregivers Month of November for her role as primary caregiver to her husband, Jimmy, who recently passed away due to complications from multiple sclerosis. Madeline’s story is one of exceptional selfless giving. She and James, who was diagnosed with MS in 1964 when he was 13 years old, were reacquainted at their 25th High School Reunion. Their 2003 wedding plans were put on hold because Jimmy fell into a coma. After 35 days he awoke, and he and Madeline were married in the Intensive Care Unit at Mount Auburn Hospital in Cambridge, Mass. Together, Jimmy and Madeline dealt with a variety of severe medical needs until he passed away in September. Madeline’s love and care for Jimmy never wavered. There are many more family caregivers who, like Madeline, persevere through difficult and often dramatic situations, without recognition or reward.

(L-R) Michelle Dickson, Advocacy Director, Madeline Russell, Family Caregiver Award Recipient, and Virginia Morse, Advocacy Coordinator. 

Pediatric MS Studies Receive Federal Support

The Society’s network of Pediatric MS Centers has been awarded a five-year grant from the National Institutes of Health to study genetic and environmental risk factors for MS in children with the disease. The study will enroll children and teens with MS and matched controls without MS for a single visit to one of 10 centers around the country—in California, New York, Massachusetts, Alabama, Minnesota, Texas, Pennsylvania and Washington. Four new centers are part of this project in addition to the six created with support from the Society’s Promise: 2010 campaign. To learn more about the study including referral information, please email janace.hart@ucsf.edu or call 415-514-2476. For more information about pediatric MS, visit www.nationalMSsociety.org/pediatricMS.