Nancy K. Seyden, 1947-2011

Nancy Kathleen Seyden died on January 22, at the age of 63 at Sutter Davis Hospital following respiratory failure. She was born to Walter and Anne Seyden on July 21, 1947 in San Francisco and grew up with her little sister Phyllis in Pleasant Hill, where their parents had settled after the Second World War. Nancy was twelve years old when she was diagnosed with a Guillian-Barre neuromuscular condition following a polio vaccine. The illness terminated Nancy’s dream of becoming a ballet dancer and forever changed the life of her family.

Nancy spent her formative years in an iron lung at the county hospital in Martinez, California. She arrived on the UC Davis campus in 1967 as a freshman after some trepidation from officials at the University. This was understandable considering that Nancy appeared in a large power wheelchair with ventilator machines. Because the campus was not prepared to deal with the needs of disabled students, Nancy was housed in a room on the first floor of the Student Health Center, where medical staff could keep an eye on her.

In the face of formidable obstacles, both physical and social, Nancy was determined to succeed and graduated with her Bachelor’s degree in 1972. She went on to earn a Master’s degree in Human Development in 1975. Shortly thereafter, Joel Bryan, a renowned activist in the Independent Living movement, recruited her to the UC Davis Services to Handicapped Students (later called the Disability Resource Center) that was developed under his leadership. Joel became her lifelong mentor and friend. Nancy made significant contributions to the campus and through her counseling and support, encouraged and empowered hundreds of students with disabilities throughout the years. Nancy left the Disability Resource Center in 1993 after it shifted its focus from student empowerment to compliance with ADA (Americans with Disabilities Act) regulations. Despite this disappointment, Nancy never lost her passion to help students with disabilities attain their academic and personal goals.

Shortly after leaving the Disability Resource Center, Nancy joined a nationally funded Research and Training Center in Neuromuscular Diseases at the UC Davis Medical School. She worked there for several grant periods, focusing on quality of life issues and rehabilitation and gave occasional lectures to students at the Medical School. Her main effort was “focus group” interviews of the life cycles of persons with neuromuscular conditions. Ultimately, she collaborated with the California Department of Rehabilitation on employment issues for people with disabilities.

Nancy was a tireless advocate for persons with disabilities and was involved in myriad organizations at the University and in the community: Nancy was a founding member of the Board of Directors for the Resources for Independent Living Center in Sacramento (serves Yolo County); she developed training videos and lectures for the Yolo In-Home Support Services program and the UC Davis Medical School; she was a member of the committees for ADA Compliance and Human Relations, City of Davis; she served as president of the Yolano Chapter of Californians For Disability Rights; she was a founding member of the UC Davis Forum on Disability Issues; she was chair of the Yolo In-Home-Supportive Services and Public Authority Advisory Committee; she was the founding vice-president for the statewide California In-Home Support Services Consumer Alliance (CICA).

Despite her full-time work schedule and committee involvement, Nancy still found time to travel extensively throughout the western United States, from New Mexico to Canada. Her long road trips were legendary and her orange (and later white) van was seen in the strangest places, exploring the small and big wonders of the world. She had a deep interest of all living creatures and in nature and could never give up reaching that rare overview or that elusive bird, out there – far away. She also found the time to attend the annual Sacramento Jazz Jubilee where Dixieland and Zydeco were her all-time favorites.

It may be easy to overlook the fact that Nancy’s life was a constant struggle to stay aloft. She acutely felt that she was being financially penalized for being disabled, for working, for being married, and for retiring. She saw the root of the problem in the fact that in order to obtain state support to fill her care needs, she and her husband were forced to live well below the poverty line. She struggled for years to right this injustice and to improve the state In-Home Support Services. She did not live to see the latest onslaught on these essential services for people who are in the most need for support.

Nancy retired in 2008 after over 30 years with the University, determined fully to devote her life to her pets, garden, reading, and her husband of many years. She rediscovered the knitting passion of her youth and gained many new friends through her interests and volunteer work, which included Yolo Reads, and Yolo Basin Foundation. Nancy was an education docent for Yolo Basin Foundation and volunteered countless hours teaching visiting school kids.

Nancy left a lasting impression on the people she met and interacted with. She and her husband were an inspiring presence in the Davis community for more than two decades. Nancy’s loss will leave a void in the lives of all who knew her and appreciated her boundless energy, eternal optimism, patience and kindness and especially, her wicked sense of humor. She will be deeply missed by her family, friends, colleagues, and caregivers, many of whom are scattered around the country but always kept in touch.

Donations in Nancy’s memory can be made to the Yolo Basin Foundation, P.O. Box 943, Davis, CA 95617. The funds will be used to improve accessibility at the Yolo Bypass Wildlife Area, which Nancy loved so much.

* * * * * * * * * * * * *

“Nancy Seyden, Longtime Disability Rights Advocate In Yolo County and Across State Passes Away”
Death Follows Death of George Moore, Disability Rights Advocate, also of Yolo County – Seyden Was On IHSS Advisory Committee – Passing of Both Respected Advocates Comes As California Observes the First “Ed Roberts Day”
SACRAMENTO, CALIF (CDCAN) [Updated 01/23/2011 04:25 PM (Pacific Time)

Nancy Seyden of Davis, a longtime and beloved advocate for disabilities and senior rights in Yolo County and across the State, died Saturday (January 22) on the eve of the observance of California’s first “Ed Roberts Day” January 23rd. Her death follows the passing of another widely respected major disability rights advocate in Yolo County, George Moore, who passed away last week.

Seyden was serving as chair of the Yolo County In-Home Supportive Services (IHSS) Advisory Committee and fought hard over the years against the cuts by various governors to the IHSS program and other critical services that impact the rights of people with disabilities, mental health needs and seniors.

There were no details available on the cause of Seyden’s death or announcement of services (CDCAN will report any information as soon as it becomes available).

Laura Williams, statewide president of Californians for Disability Rights (CDR) which both Seyden and Moore were longtime members of, expressed deep sadness saying that the State has “lost two lions of advocacy this last week.”

Seyden Original Member of Yolo County IHSS Advisory Committee –
Seyden served on the Yolo County In-Home Supportive Services (IHSS) Advisory Committee since it was established in 2001, and worked before that and since then as advocate on a wide range of disability rights issues.

She served previously as a longtime board member of the Sacramento based independent living center, Resources for Independent Living (RIL), headed by Executive Director Frances Gracechild, who mourned the loss of Seyden. Seyden also served as a counselor and outreach resource for the Disability Resource Center at UC Davis, and as a member of the Davis Human Rights Commission.

Seyden was often a speaker and presenter at many events, including on January 27, 2002, on “Pulse:, UC Davis Medical Center’s Emmy award-winning health magazine show that had a segment titled “Living with Neuromuscular Disease: Quality of Life”. Seyden attracted attention of the Pulse staff with her presentation to UC medical students entitled “Wellness in the Context of Disability: Enhancing Physicians’ Knowledge About Those Who Live With Disabilities”. For the 2002 Pulse segment, some home videos of Nancy’s wedding, bird watching in a nature preserve, and shopping at a Farmer’s Market were utilized to illustrate her high quality of life as a woman with a significant disabilities.

Seyden, who was also president of the Yolo County chapter of Californians for Disability Rights (CDR), and who was highlighted in an article the organization’s recent statewide newsletter this past year titled “You’ve Come A Long Way, Nancy”:
“When she was twelve years old, Nancy Seyden contracted Guillen-Barre Syndrome. From lack of coordination during her trick diving routine and having to gasp for air too quickly, in six months the symptoms advanced to lack of speech control, blurred vision, inability to get up after falling or to dress and groom herself.

Diagnosed first as Myasthenia Gravis, she was sent to the hospital for observation. The appalling loss of lung capacity made the Syndrome evident to the doctors, within two months Nancy was totally paralyzed. Unable to breathe, unable to speak, she was put in an iron lung. “I was so paralyzed I couldn’t even smile” she says.

She had only left some control of her lips and her eyelids, which she used as her only way of communication. The nurses will say the alphabet slowly and Nancy will blink her eyes or stretch one corner of her lips (whichever was easier to do that day) at the letters that spelled what she wanted.

Nancy was in this condition for three years, after which her voice started coming back and her facial muscles loosened. Later her hands and arms recovered some movement.

From the Iron Lung and Rocking Bed she was changed to portable respirators on a wheelchair, both of which she uses to this date. Nancy was in the hospital for eight years, day after day, to a heaping two thousand, nine hundred and twenty days, except for those weekends when she went home.

In the hospital she had a home teacher. When Nancy left the hospital, a young woman of 19, she attended junior college and then went on ti the University of California at Davis. There she lived in the Health Center on campus.

Nancy continued to advocate for persons with disabilities, her latest project being the emergency battery back-up system her chapter devised with the local Fire Station.

The Yolano Chapter [of Californians for Disability Rights], under Nancy’s leadership, donated the seed money for the first batteries to be held at the Fire Station, and made available during power outages for persons needing power for life saving equipment. Nancy lead this project after a several day power outage in her home town led to a hospitalization to stay alive.”