Page One

When it came down to whether or not Terri Schiavo should live or die, many in Berkeley’s famously left-wing disabled community found themselves in lock step with the Christian Right. 

“There’s a rift between the able-bodied Left and the disability movement over this,” said Ruthanne Shpiner, who has been confined to a wheelchair since a bicycle accident 20 years ago. “Jeb Bush might be wrong 99 percent of the time, but I don’t think he missed the boat here.” 

On Thursday Schiavo, a severely brain damaged woman, died at a Florida hospice, 13 days after her feeding tube was removed. While Christian conservatives leaders fought to restore the tube as a right-to life issue, many local disabled residents viewed her plight as a matter of disability rights. 

“Basically they’re saying that it’s OK to starve people with disabilities who can’t communicate and must be fed through a tub. It’s quite frightening,” said Nicholas Feldman, whose cerebral palsy causes a speech impediment. “For someone like me it’s especially frightening, because there’s a risk my wishes could be misunderstood by doctors.” 

Disabled rights groups are particularly upset with the American Civil Liberties Union, a traditional ally, which represented Michael Schiavo in his effort to remove his wife’s feeding tube over the objection of her parents. 

“The ACLU is giving more weight for a person on death row than they would for Terri Schiavo,” Shpiner said. 

Schiavo was an able-bodied woman until she suffered cardiac arrest 15 years ago that deprived her brain of oxygen and left her in what doctors called “a persistently vegetative state.” According to the National Institute of Health, people in such a state cannot think, speak or respond to commands and are unaware of their surroundings. Schiavo could breath under her own power, but couldn’t swallow without the feeding tube. 

Her condition was not as hopeless as some would assume, said those interviewed. “Even if she was in a vegetative state, she’s still alive,” said Blaine Beckwith, who was born with a spinal condition. “I use a breathing tube every second, but I have a productive life.” 

“A feeding tube is not life support,” Shpiner said. “It’s just how she got her nourishment.” 

The Schiavo case made headlines at a time when many disabled people fear that popular culture has pushed the notion that death is a respectable alternative to living with a disability. This winter several disabled rights groups protested the Oscar-winning film Million Dollar Baby, over its ending that portrayed the assisted suicide of the lead character as an act of mercy after she became disabled. 

Several people interviewed drew parallels with Schiavo. “The idea that they’re doing this woman a favor by ending her life is deplorable,” Beckwith said. “I’m offended that this woman is viewed as someone in abject misery that needs to be relieved from her suffering.” 

While disabled residents interviewed all favored restoring Schiavo’s feeding tube, they differed on the wider subject of assisted suicide. Leading disability rights organizations have long opposed the right to die. The Berkeley-based Disability Rights Education and Defense Fund strenuously objected to a failed euthanasia bill in 1999 drafted by former Berkeley Assemblywoman Dion Aroner. 

“With profit-driven managed health care, there’s a serious risk that HMOs will overrule the patient’s wishes,” said Marilyn Golden, a disabled woman and police analyst for DREDF. 

Michael Pachovas, who became disabled after an injury he suffered while in the Peace Corps, said, “Of all the exemptions we could have to improve our lives, the right to kill ourselves shouldn’t be at the top of the list.” 

But Ron Washington, a quadriplegic, fears that the federal government’s interference to save Terri Schiavo could herald a drive to keep him from having the final say over his life. 

“I don’t want to offend anyone in the disabled community, but personally for me I would not want to have my life extended if I was unconscious for a number of years,” he said. 

When it came to Schiavo, most of those interviewed would have sanctioned her death had she made her wishes clear in writing and her entire family was in agreement. The case has spurred many of them to consider drafting living wills and determine at what point, if tragedy struck or their condition worsened, they might want their life ended.  

For Feldman, who also approves of physician assisted suicide, he wanted to remain alive as long as his brain functioned, but didn’t want to be on life support for more than 48 hours. Shpiner said she would direct her loved ones to keep her on life support for at least six months if doctors agreed other treatments would not revive her. Pachovas said he would want to be kept alive. “If I can still enjoy the feel of a woman’s breath against my cheek, they better keep me breathing.”