A brother’s memoir

Abstract

On the 29th anniversary of the Americans with Disabilities Act, the author takes stock on what the Act has accomplished thus far and what still needs attention, as he reflects on Andrew I. Batavia's (Drew) discovered memoirs and his life mission as a disability activist. Drew was a person with a spinal cord injury who wrote regulations for the Act. As we celebrate the Act today we need to protect and advance these civil rights now and into the future so that all people can participate more fully in life.

Keywords:

• Disability
• Americans with Disabilities Act
• civil rights
• architectural accessibility
• employment
• disability policy

Beep, beep, beep. The repetitive sound helped distract me from the heaviness that filled the room. The sine waves on the monitor still indicated hope while a dozen tubes carrying herculean drugs funneled into my older brother’s neck in a futile effort to quell a feral infection. To see Drew supine, passive, and unconscious in intensive care was in sharp contrast to the person I knew – driven, engaged, and accomplished in life. His was a life well planned. Had he not trained in law at Harvard or in research at Stanford, he likely would not have been selected for the coveted White House Fellowship, where he penned regulations for the landmark American with Disabilities Act (ADA) of 1990. Whenever I hear the motoric din of a wheelchair lift operating on a city bus, eye an outdoor ramp leading to a building entrance, or trigger an automatic door opener at a supermarket, I think of Drew along with many others in these efforts. While many of these undertakings could have enlisted the work of a small battalion, Drew made his mark using very little – paralyzed from the neck down since age 16, when he was ejected from a Corolla in a 1973 car wreck.

So you may wonder how my brother accomplished all that he did with the little bodily control that he had. I wondered too; in fact, for most of my adult life I was baffled. He outproduced most able-bodied scholars with his troves of publications and legal briefs, powered by an uncompromising mission, which at the time I was clueless about. Remarkably, much of Drew’s early writings, including ADA regulations, was tapped out on a keyboard like a woodpecker, using only his mouth and a stick. But all this ended in 2003, when he slipped away from us at the prime age of 45; ironically, let down by the very health-care system that he tried to reform – death by sepsis. The family, numbed by the suddenness of this ginormous loss, closed this chapter in their lives and I, in turn, never really got to uncover who my post-injury sibling really was. We all drifted apart. Cheryl, Drew’s wife, went on to raise their kids by herself, and I pushed Drew’s unfinished manuscripts through the publication pipeline, a task that helped to temporarily distract me from the ineffable grief we were all facing.

End of story … or was it?

Fast forward 12 years; I got a call from Cheryl. Drew had memoirs. He had started his life story with four chapters, which he had planned to complete that same year to celebrate 30 years of quadriplegia. It turned out that he never finished, and Cheryl asked if I might consider doing so. Although the thought of drilling into my family’s painful past was not terribly appealing, I agreed to at least think about the assignment. Two weeks later, I got a monstrous shipment from Cheryl containing Drew’s lifework: publications, tenure files, newspaper clippings, press releases, poems, and an unobtrusive CD containing computer files buried between his other papers. In those files, I discovered memoirs, Drew’s memoir, describing his phenomenal life journey with a spinal cord injury and the wisdom he collected along the way. But rather than just finding four meager chapters, the CD contained an explicit blueprint for a book, complete with a title, table of contents, preface, and 14 finished chapters leading up to his celebrated work on ADA regulations (Batavia and Batavia 2016)!

I froze. Drew had been gone for years but as I read these files, his text came to life and flew off the pages like dandelion seeds taking flight in a breeze. I savored each word like an archeological find, carefully brushing around each newly discovered sentence for meaning. The memoir resurrected Drew. His unmistakable voice plunged me both into a bout of ecstasy and a pit of darkness – I wanted him back!

The memoir opened with a statement: ‘I can remember when I was very young thinking that irrespective of how my life unfolds, I just hope it is interesting.’

Later, his humor exposed itself when talking about the car accident:

If your mother is anything like my mother, you have heard several thousand times in your life that you should not do any of a variety of risky things, ‘or you will break your neck!’ It turns out that this is pretty good advice. Breaking your neck is not nearly as fun as it sounds.

Still later, a hint about Drew’s life mission: ‘My father's favorite fictional character, Don Quixote, became a part of my inspiration to achieve a quest that may seem to some impossible.’

As I read, he took presence in the room, standing by my side and taking me by the hand on his journey from our early days growing up in Brooklyn to his ladder climb in Washington, DC. The exhilarating and often disturbing writings reawakened the past: the nostalgic scent of cheese pizza and stuffed cabbage hovering over the Italian-Jewish neighborhood of Bensonhurst in the 1960s, the sick-bed stench of bleach and isopropyl alcohol permeating the sterile hospital wards of the Bronx in the 1970s, the draconian image of a Circ-O-Lectric bed that Drew’s skull was drilled to while the bone fragments of his neck healed, and the helplessness of being marooned underground in the New York City subway system because there were no accessible working elevators to get Drew up to street level. These recollections both haunted and healed. Reading these treasured files was like an oracle visit – my lingering questions were getting answered. Was he happy? Did he have regrets? What was his vision?

Was there a common thread to his life journey? Why was he involved not only in the Independent Living Movement and universal healthcare, but also in physician-assisted dying – of all things! Could these seemingly contrary pursuits hang together in a way that finally made sense? In fact, his memoir offered the answer. Drew had a single mission – to ensure control and choice in one’s life.

So the question is, has there been more control and choice for Americans with disabilities since the ADA’s enactment? Certainly sidewalks, new construction of public spaces, and transportation are more accessible for people with physical challenges. Ramps, beveled sidewalks, and bus lifts are prime examples. Accessible pedestrian signals now assist those with visual impairments when crossing city streets, and closed-caption options are readily available in films and video for those who are deaf or hard of hearing (Diane Rehm Show 2015). Even my own quality of living has been greatly enhanced when, because of a hearing impairment, I was able to access a digital device that displayed the lines of actors, in real time, during a Broadway show!

Nevertheless, the hope that the ADA would usher in opportunities of employment for those with disabilities has fallen short (Institute on Disability 2018; Thornburgh 2015). While obstacles to employment are multifactorial, many are modifiable environmental barriers, such as non-functional workstations, inflexible schedules or policies, and negative employer attitudes (Schur et al. 2017; WHO 2002). Attitudes cannot be legislated. Employer fears such as high costs to accommodate or reduced employee productivity are not necessarily well founded. In fact, those with disability can contribute valuable and unique problem-solving perspectives in the job (Llana, Trumbull, and Whitney 2019) and the median one-time cost to accommodate a disability at work is $500 (£385) (JAN 2019). Surprisingly, Drew’s modest requirements to work on Title III ADA regulations at the US Department of Justice included just the use of a personal computer, a mouth stick, and a raised desk (on blocks).

There are also new challenges on the horizon. As populations age, more individuals may experience a disability and require some form of assistance (Frieden 2015). While assistive technology, including hearing aids (Weintraub 2017), and complex rehabilitation technology, such as stair-climbing wheelchairs (Capecchi 2007), have helped people with disabilities participate more fully in life, their costs need to come down so more people can have access to them.

What might Drew notice today if he could return? I imagine he would be encouraged by the advances in the accessibility of public places and transportation – except for New York City’s inaccessible subway system (Stringer 2018) – but equally disappointed in the low employment rates. Having a comprehensive vision on civil rights, Drew would likely be encouraged by legislation in multiple countries favoring assisted-dying (Emanuel et al. 2016), a divisive issue within the disability community, but impatient on progress toward attaining accessible and affordable healthcare in the United States (Kennedy, Wood, and Frieden 2017).

Clearly, more work needs to be done, but we are moving in the right direction. Thanks to the many thousands of people within the disability community who pushed for disability rights prior to and leading up to the enactment of the ADA of 1990 (Frieden 2015; Mayerson 1992), people with disabilities do have more choices.

Now, when I reflect on the beep, beep, beep of monitors in the intensive care unit during Drew’s final days, I imagine the heartbeats of future generations of people who will pick up the fight and continue to protect the hard-earned civil rights for people with disabilities, so that all individuals can have more control, and experience greater choice in their lives.

Disclosure statement

Mitchell Batavia is co-author of the memoir, "Wisdom from a Chair: Thirty Years of Quadriplegia".