iCan News Service

Most disability advocacy groups oppose the right-to-die, but how do people with disabilities feel?

That's what Andrew (Drew) Batavia wanted to know.

In 1997, as the Supreme Court was considering the question of physician assisted dying, long-time advocate and lawyer Batavia was looking over the organizations that signed amicus briefs (in support of one side of the case).

And he was surprised at what he found.

"There were no disability groups on the other side to represent what I believe the majority opinion supported. There was a perception that all disability groups were anti 'right-to-die,'" said Batavia, 45, who has quadriplegia.

According to a 2001 Harris poll, this is the opposite of how people with disabilities actually feel about the subject. When asked if "the law should allow doctors to comply with the wishes of a dying patient in severe distress who asks to have his or her life ended," 68 percent of adults with disabilities agreed; 26 percent disagreed.

Batavia, an associate professor at Florida International University, felt the leadership of the disability community was not accurately representing people with disabilities. He is even more direct:

"There was a need to counteract the presence of Not Dead Yet ... and the perception that they represented the majority of people with disabilities which is how they present themselves."

"I recruited Hugh (Gallagher) and Michael Stein and we established Autonomy Inc. ... Hugh came up with the name," Batavia said.

Gallagher is the author of several disability-related books. Having spent nearly 50 years in a wheelchair, he is an acknowledged expert on post-polio syndrome and a long-time advocate. In 1968, as part of the Johnson administration, he wrote much of the language for the Architecture and Barriers Act, one of the first disability civil rights laws.

For Gallagher, Autonomy Inc. is about empowerment over all aspects of your life.

Gallagher based some of his perspective on "By Trust Betrayed," a book he wrote years ago. "I wrote a book about doctors in Nazi Germany, who would kill patients with disabilities whom they called ... wasted lives. ... Doctors made all the decisions for their patients. ... People were not organized and didn't resist. ... Now that's victimhood. Anybody who is capable of making decisions for themselves, if they have a disability or not, should be heard.

"I have fought all my life to make my own decisions, to be independent and make choices for myself," Gallagher added. "I am never going to give that autonomy to doctors, my family or anyone."

Gallagher became Autonomy's vice president. And Batavia was very happy to have him aboard. "I have enormous respect for Hugh. He's a remarkable human being."

"Those who argue against physician assisted dying, they believe it's a plan by society to do away with people with disabilities," he said. "Opposing the right (to physician-assisted dying) is treating people with disabilities as objects. It's saying that any person who has a disability can't make decisions for themselves. It's treating people with disabilities like victims. I am not a victim. I am not an object. I want autonomy over my body."

Batavia believes some may have misunderstood what the group is really all about.

"Our overall mission is to provide a full-range of options for people with disabilities," he said. "We are not a right-to-die group. We are a disability rights organization that supports the right to decide issues of your life. ... Of course the most controversial is the right-to-die, but the unifying theme is choice and control."

Among the other issues on the group's agenda are consumer-directed personal assistant services, attendant care, assistive technologies and strong enforcement of the ADA. Currently, the group has filed amicus briefs supporting the state of Oregon in the Oregon vs. Ashcroft. In the case, the state is challenging the attorney general's decree that prosecutes doctors who assist patients in physician-assisted deaths.

In the meantime, the organization is working with other advocacy groups, including Not Dead Yet. The two groups have scheduled speaking engagements to openly debate the topics surrounding disability and death. And they have respect for NDY's founder, Diane Coleman.

Says Gallagher, "I think Diane is remarkably able and informed and determined. She's a friend."

To promote dialogue among people with disabilities, Autonomy has put links on its site to other disability organizations, even those who they disagree with. The group says it wants people to look at all sides of the issues. Ultimately, people with disabilities will have to come to their own conclusions. And that's fine with Batavia.

"We want to encourage a full range of discussion," he said. "We can be a source of fresh ideas."

iCan! adviser and contributor McKinzie Brantley is a veteran in advocacy and nonprofit organizations. E-mail him at news@icanonline.net.

Autonomy promotes choice, supports right-to-die August 7, 2002

Autonomy promotes choice, supports right-to-die
August 7, 2002