Heroes of Marin 2016
Courage: Aneice Taylor
By Dani Burlison
In 1982, Aneice Taylor’s Lagunitas home was destroyed in a powerful mudslide. The freak accident left her, a 37-year-old mother of two, paralyzed below the shoulders. After a six-month hospitalization, Taylor returned to her role as a parent while simultaneously learning to live as a quadriplegic.
After about three years prioritizing her role as a parent, Taylor says she realized that she was going to need more attendant care than was available through In-Home Supportive Services (IHSS) to remain at home with her children. The county/state program assists low-income individuals who need help from others to remain safely in their homes; yet the wages through IHSS are usually very low, and for Taylor, there were not enough hours awarded each month.
“Upon examining all possible situations where I could work or receive extra funding for attendant care,” Taylor says, “the only possibility I could come up with was to form a nonprofit to help quadriplegics like myself to help pay for their personal attendant care.”
So she did just that. In 1987 Taylor founded IN SPIRIT, a local nonprofit organization that works to provide services to people living with spinal cord injury, multiple sclerosis, ALS, polio, muscular dystrophy and other neurological disorders. IN SPIRIT fills in the gaps, so to speak, that are left by the low wages and hours available by government agencies, by providing monthly grants toward their care. The organization also has a program that assists with certain special needs of quadriplegics and has been very active in legislative advocacy work to improve services through IHSS.
“Almost all quadriplegics would rather live at home than in nursing homes, and will endure many hardships to live independently,” Taylor says. “This service is a great boon to the families and for the home-care workers of those who we help.”
Yet, funding can, and has been, a problem in regard to people acquiring the help that they need, which can vary greatly. Taylor says that “adequate personal home attendant care is essential for quadriplegics to get help with their activities of daily living: Dressing, feeding, bowel and bladder care, range of motion, bathing, grooming, access to community and sometimes respiratory assistance. If these needs are not met, quadriplegics can be faced with a myriad of health complications, some of which may be life-threatening. They might also have long hospitalizations, and without essential services, they might be isolated and depressed.”
IN SPIRIT receives its funding through foundation grants, private donations and fundraising events. Over the last decade, funding for the organization has declined, an impact brought on by a shaky economy. Yet Taylor says that IN SPIRIT has never had to discontinue offering services to their clients and has assisted them through their end-of-life care.
“The greatest reward of my work is that we have been operating nonstop since 1987, and have helped many people continue to live at home,” Taylor says. “The bonds and friendships developed with our clients and their families, it is very enriching and comforting to them as well as myself.”
One of Taylor’s favorite stories is of an individual who IN SPIRIT worked with who had a persistent and severe form of muscular dystrophy since he was a toddler.
“He was one of our earliest clients and after 20-plus years of IHSS and IN SPIRIT assisting with attendant care funding, he is now over 50 and is still living at home with his devoted mother,” Taylor says. “As [his mother] says, ‘I made a pact with God that if my child could live, I would care for him the rest of his life.’ Although they experience serious medical hurdles, with his devoted attendants and mother, their household has been upbeat and bright.”
Cases like this are not uncommon and are exactly the types of scenarios that Taylor hopes to continue creating through her work with IN SPIRIT. The organization often has a waiting list of applicants hoping to remain at home with their families.
“I have been very rewarded to have meaningful work all these years. It made a big contribution to my happiness and sense of well-being as a quadriplegic,” Taylor says. “It has also been rewarding to have had the generous support of the community in which I have lived for over 40 years—the San Geronimo Valley.”
And Taylor’s community is certainly grateful for her. According to one friend/colleague, “She can reflect her own success in maintaining independence and dignity while living as a quadriplegic. Aneice helps quadriplegics expand awareness of their possibilities by showing her skillful achievements in personal management.”
It’s a sentiment that makes Taylor well-suited to be the recipient of this year’s Heroes of Marin award for Courage, the category that recognizes “an act of bravery or for determination and strength of character to triumph over adversity.”
“Part of our mission has been to educate the public about the lives of quadriplegics,” Taylor says. “I have a saying: ‘It takes a community to keep a quadriplegic on the roll,’ so keep your eye out for quadriplegics in your community. It is an honor to be acknowledged by the Heroes of Marin award.”