CDCAN REPORT #021-2011: Nancy Seyden, disability and senior rights advocate, passes away

• 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”

Nancy Seyden in the Yolo County Public Authority newsletter, February 2009. Photo by unknown.

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 (pictured above left) 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 to 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.”