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Wisdom from a Chair

Thirty Years of Quadriplegia by Andrew I. Batavia

With gratitude to Andrew “Drew” Batavia’s family, Compassion & Choices is able to share excerpts of this remarkable man’s memoir. Batavia spent his very full and far-too-short life advocating for civil rights, including the right to make one’s own healthcare decisions at the end of life. The book, begun by Andrew and completed by his family, was published in the summer of 2016 to coincide with the 26th anniversary of the Americans With Disabilities Act.

Don Quixote is the hero of a celebrated 17th-century Spanish novel and has become a moniker for people who take it upon themselves to right the wrongs in this world. To be quixotic is to be exceedingly idealistic and unrealistic. To tilt at windmills is to be Don Quixote, battling the giants in his mind.

So it is fitting that on the cover of Andrew I. Batavia’s posthumous memoir is a drawing called “Don Quixote mounted on a wheelchair and fighting the windmills of injustice.” When Andrew was a senior in high school, he asked his brother, Mitchell Batavia, to draw it for him. It was Andrew’s first year at school following a grueling year of rehabilitation, fighting his way back from a car accident that had left him paralyzed from the shoulders down.

Unlike Quixote, however, the windmills at which Andrew Batavia tilted were not imaginary. They were the real injustices suffered by people like him who were living with disabilities in a world not built for them. When Andrew Batavia decided to attend the University of California, Berkeley in 1975, for example, it was in large part because there were only three campuses in the entire country that accommodated a student in a wheelchair, and Berkeley was one of them.

After receiving degrees in both law and public health, Andrew became an activist and an advocate for people living with disabilities. He grew so expert in the law and policy of disability that he was sought out by then-U.S. Attorney General Richard Thornburgh to help author the regulations — the enforcement roadmap — for the Americans With Disabilities Act that deal with access to places of public accommodation.

Just as he advocated for autonomy and self-determination in daily life for those living with disabilities, Andrew Batavia was also a champion for these freedoms at the end of life. As a lawyer, he wrote amicus briefs in two landmark legal cases about the right to medical aid in dying: Washington v. Glucksberg in the U.S. Supreme Court and Krischer v. McIver in the Florida Supreme Court. He also co-founded a disability-rights organization to advocate in favor of aid in dying for people with disabilities called AUTONOMY, Inc.

Andrew Batavia was a prolific, tireless, brilliant man. Compassion & Choices is pleased to share the following excerpts of his memoir, Wisdom from a Chair: Thirty Years of Quadriplegia. Andrew wrote many chapters of the book, which his family later found with the request they complete it. Andrew’s brother, Mitchell Batavia, did so by commenting on existing chapters and writing additional ones. It is also rounded out with observations and stories from Andrew’s wife and children. The book was finally published this year by his family, 13 years after Andrew’s death.

From the Preface by Andrew I. Batavia:

I believe the key to happiness is to find a good mission in life, to make it your life’s work, to take that work very seriously, and not to take yourself seriously at all. Most people who publish autobiographies are self-important, self-serving blowhards, who take themselves much too seriously. With some notable exceptions, this is true whether the author is a sports hero, captain of industry, or even president of the United States. Publishing one’s private memoirs is, in a sense, the ultimate act of arrogance, in that it assumes that someone else would, or even should, be interested in the author’s existence. So, this raises the obvious question: Why did I write and publish this particular memoir, particularly at the relatively young age of forty- five, without being famous yet, or possibly ever.

….

[T]here are reasons that my life may offer unique insights. First, for the last thirty years, I have not gone to a single public place or event in which I have not been part of the show. People appear infinitely interested in watching me racing down the street in my chin-controlled, motorized wheelchair. Often I would be accompanied by one or both of my beautiful children, whom my wife and I adopted from Russia; one would be standing on the back of the chair and the other sitting on my foot plates, and we would be weaving in and out among people at full speed.

Living one’s life without the use of arms, legs, or hands presents some interesting challenges and appears to be inherently intriguing to many people. I suppose some are wondering what my life is like and whether they could survive under similar circumstances; I am sure that most could, in that we humans have a remarkable capacity to adapt to almost any conditions. I have never resented this voyeurism; as a person who was not disabled for the first sixteen years of my life, I am certain that I would have been similarly curious if I had not severed my spinal cord in 1973 and if I were in the same room as someone with my current disability.

….

Over the years, many people have told me that I am an inspiration. Although I have always appreciated such sentiments when conveyed sincerely and without pity, for a long time I found such compliments somewhat annoying. I always find “inspirational movies” about the lives of people with disabilities a little nauseating. My mission in this world is to try to ensure that all people, including people with disabilities, have greater choices in and control over their lives. I believe that achieving this mission will make the world a slightly better place than it was before I got here. Recently, I have decided that if this orientation, or the way in which I live my life, inspires someone, that is fine.

 

The Right to Live and Die by Mitchell Batavia:

Drew’s pioneering work in the right-to-die debate and physician-assisted dying controversy from a disability perspective was a hot-button topic and one that he saw as an extension of civil rights of persons with disabilities — the right for control over one’s life, including a personal decision to end it.

His perspective on this controversy first took shape during his painful recovery following his spinal cord injury, when he was anxious about whether he would have to endure unending pain and discomfort for the rest of his life. What gave him peace of mind, however, was the notion that if life became too unbearable, he could end it along with his suffering. Apparently, he discovered others in the disability community who thought along similar lines. Drew later solidified his position on physician-assisted dying when he contracted the flu, had difficulty breathing, and was rushed to an emergency room. What if the terror he felt while gasping for breath was not a short-term event, Drew reflected, but instead was part of an unending terminal condition? Under those circumstances, he would want the right to access a physician to help end his suffering, without government interference.

….

In the mid-1990s, he had the opportunity to advocate for mentally competent individuals who were terminally ill and sought medically assisted deaths. He did this pro bono work, which involved filing amicus briefs, while at his Florida law firm, McDermott Will & Emery. Drew authored and served as the attorney of record for a number of these briefs (where he was supportive but not directly connected to a particular case).

This work prompted Drew to launch AUTONOMY, Inc., a not-for-profit organization he cofounded to continue his mission of representing people with disabilities who wanted choices and control over their lives, including end-of-life decisions. He established this organization in 2002, the year prior to his death.

….

Drew assembled a board of directors, launched a website, and cultivated a strong following of more than 5,000. That year, the organization filed an amicus brief in the case of Oregon v. Ashcroft in support of the Death with Dignity Act, whereby terminally ill, mentally competent adults could achieve a peaceful death with the aid of physician-prescribed medication.

….

Drew’s support of physician-assisted dying was likely the most contentious of his career, causing a rift in the disability community. Those against this right, such as a group called Not Dead Yet, used the slippery-slope argument that physicians who devalue persons with disabilities will opt to put them to death, given the chance. They referenced Nazi atrocities and suggested that states might find it cheaper to kill than to treat them, if the act became law. One basis for their argument is that ending someone’s life is wrong. On the other hand, Drew and others in AUTONOMY argued for persons with disabilities to make their own end-of-life decisions, free from state intrusion, and based on the principles of self-determination and autonomy.

….

Drew believed the controversy of physician-assisted dying would not simply disappear. He wrote, “Our society will have to address the views of people with disabilities, who have strong opinions on both sides of this issue.”