Andrew Batavia (far left) at the 1991 signing, by the U.S. Attorney General, of the ADA regulations he wrote. (Photo courtesy Batavia family.)

Andrew “Drew” Batavia was among the 1,000 or more people gathered on the White House lawn on July 26, 1990, watching President George H.W. Bush sign the Americans With Disabilities Act (ADA) into law. He was also there a year later when Attorney General Richard Thornburgh signed the Act’s regulations into a law – regulations Andrew himself had authored.

As a lawyer with a graduate degree in health services, Andrew had long advocated for disability rights and testified in support of the ADA. So he welcomed the opportunity to help the Justice Department draft the Act’s regulations dealing with access to places of public accommodation – banks, hotels, restaurants, etc. – during his stint as a White House Fellow.

At age 16, Andrew Batavia survived a terrible car accident that left him without the use of his arms or legs. He undertook a full year of rehabilitation after the accident and went on to graduate from high school as president of his class. He proceeded to earn a law degree, a public health degree, and to become a respected scholar and expert (and prolific writer) on the intersection of health policy and disability rights. A dazzling career, the result of sheer will, intellect and energy.

Andrew died in 2003, at the young age of 45. Several years after his death, his family discovered a memoir he had begun, accompanied by his request that they complete and publish it for him. And so they did.

Andrew Batavia’s Wisdom From A Chair: Thirty years of Quadriplegia, is now published and available for purchase online.

While always committed to expanding rights and autonomy for people like himself living with disabilities, Andrew Batavia also became increasingly invested in seeing the right to self-determination extended to the end of life. In the 1990s he began actively advocating for medical aid in dying and wrote amicus briefs in two landmark legal cases: Washington v. Glucksburg in the U.S. Supreme Court and Krischer v. McIver in the Florida Supreme Court.

During these legal battles, Batavia found himself coming up against a group called Not Dead Yet. This organization, founded in 1996, calls itself “a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people.”

This group’s members, seeking to represent all Americans living with disabilities, protested outside the U.S. Supreme Court while Andrew Batavia advocated inside for the right to aid in dying. As his brother Mitchell writes in Wisdom from A Chair, “I could only imagine Drew standing tall on his principles while a segment of the disability community wanted him sitting down.”

Recognizing the power of this opposition from the disability community, Andrew founded a disability rights organization of his own, which would publicly advocate in favor of medical aid in dying – for people with disabilities. It was called AUTONOMY, and its co-founder was Hugh Gallagher, a polio survivor as well as a friend and former board member of Compassion & Choices.

Before AUTONOMY was formally founded, Batavia and Gallagher published an open letter in 1999 in the newsletter of the Independent Living Institute, which read, in part:

“… [W]e believe certain persons and organizations who claim to speak for persons with disabilities may have seriously misrepresented the views of many of us. Public attention in recent years has focused on issues surrounding end-of-life care. We believe this is all to the good …. We wish to make clear that we do not support the practices of Jack Kevorkian any more than we support the objectives of those who would deny us the right to control our lives, either during the prime or at the end …. We do not think that people with disabilities, who have struggled for many years to have control over their own lives and bodies, would or should give up this decision-making autonomy at the end of life.”

Still, decades later, organizations like Not Dead Yet continue to oppose medical aid in dying in states where this option is advancing, still claiming to represent the interests of Americans living with disabilities. But no one group can speak for an entire community, because no community is a monolith. In fact, when it comes to the matter of aid in dying, polls show that voters with disabilities support this end-of-life option in the same majority as other Americans. They do because they know that aid-in-dying bills modeled on Oregon’s nearly 20-year-old Death With Dignity Law have provisions built in that protect all vulnerable people – elderly, poor, disabled or ill.

Anyone who believes in autonomy and self-determination owes an enormous debt to Andrew Batavia, including those of us who believe these values matter at the very end of life, too. Thanks to his new memoir, Andrew’s clear voice and vigorous advocacy for Americans living with disabilities can still be heard.

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