Charles E. Claggett Jr, Richard E. Weiss. Max Starkloff and the Fight for Disability Rights. Chicago: University of Chicago Press, 2014. 400 pp. $27.95 (cloth), ISBN 978-1-883982-79-9.

Reviewed by Henry C. Alphin Jr (Drexel University)
Published on H-Disability (April, 2016)
Commissioned by Iain C. Hutchison (University of Glasgow)

The authors provide an insightful, touching, and sobering view into the life and development of St. Louis-based disability rights activist Max Starkloff (1937-2010). Charles E Claggett Jr. is an advertising executive, following his father’s legacy and developing his own career--including the “This Bud’s for You” campaign of Anheuser-Busch in 1979. Richard Weiss is a St. Louis author and editor. The foreword is provided by William H Danforth, former chancellor of Washington University in St. Louis, who spoke at Max’s memorial service in 2011. Danforth is a close friend of the Starkloff family and a proponent of Max’s redevelopment efforts.

The majority of the story, in sixteen chapters, takes place in and around St. Louis, Missouri. Claggett and Weiss weave a largely chronological story that humanizes the disability rights movement by showcasing  the courage of one individual, Max Starkloff. Approaches toward accessibility and universal design arrangements tend to focus on mobility and abilities, such as teaching online instructors to make their courses accessible to individuals with limited physical abilities. However, protests and other outreach efforts offer an individual human element that forces societies to consider the benefits of inclusivity. Max Starkloff was one of many disability rights activists who argue that society’s attitudes toward disability are often worse than the disability itself. As an individual experiencing a catastrophic injury in 1959 when medical and support services were limited and hope scarce, Max was able to recover from his accident--from which he was a C3 through C5 quadriplegic--and lead a passionate life committed to outreach and making the world a more receptive and inclusive place for individuals with limited abilities.

The first five chapters of the book describe Max’s journey from young sports car enthusiast full of life through the tragic automobile accident and his subsequent challenges as a lonely, powerless quadriplegic with plenty of dreams alive in an immobilized body. Soon after his accident, Max believed and hoped that his condition was temporary, even when the doctors offered him an initial prognosis of only living for a few days. However, the book demonstrates that his optimism could be redirected and channeled into new objectives.

The narrative makes a slow buildup to the apex of Max’s feelings of isolation and frustration at being in a nursing home. However, this makes more sense toward the end of the book because the reader realizes that Max’s struggle shaped his character and redirected his passion from fun and sports cars to activism and developing a business. Aspects of Max’s character were shaped in the image of his mother, Hertha, who remained by his side after the accident and was a primary influence in his care and activities, even while she was battling her own family struggles, work and life balance, and health concerns. In 1963, when she was eventually unable to provide the optimal and attentive care that Max’s condition required, he was obliged to enter a new phase of his life through admission to a nursing home. It is clear that Max viewed his future in the home as more depressing and frustrating than the accident itself. However, he was not then aware that this arrangement would help prepare him for becoming an activist, husband, father, and inspiration to many.

Chapters 6 to 10 lay out Max’s development as an activist. He took up painting and, through his proficiency, gained confidence. He met his future wife, Colleen, an employee at the nursing home. While residing in the nursing home, Max began to explore his options and soon realized that independent living was a possibility. He began to develop his belief (one that he would learn was shared by many others) that individuals with disabilities can fully integrate into society and fully control and enrich their lives. He argued that people with disabilities requiring services from individuals and businesses are no different from other consumers. Colleen played a crucial role in Max’s development, falling for Max’s appearance, personality, and passion rather than assessing and judging him based on his physical abilities. She eventually left the nursing home environment in order to dedicate her work and abilities to bring “people with disabilities out of institutions” (p. 260).

The reader learns about the disability rights struggle and subsequent legal components, just as Max does, but there is little coverage of the disability rights movement outside of Max’s world. In this sense, this biography views the world through Max’s eyes: the title of the book should be “Max Starkloff and HIS Fight for Disability Rights.” Through his struggles, outreach, and perserverance, Max contributed to the philosophy of independent living and the movement of disability rights, for which he deserves recognition equal to that of activists Ed Roberts (1939-95) and Judith Heumann (b. 1947). Max fought for rights and accessibility for all disabled individuals, but this particular story is focused on his approach, successes, and failures. Individuals seeking the history of disability rights and the independent living movement, as well the evolution of accessibility and universal design should look elsewhere--and then utilize this book for the human element of the struggle.

The final six chapters of the book are for those readers seeking evidence of Max’s success in preparing a foundation for others to succeed. This book was difficult to put down--chapter 11 is around the point where the reader switches from following the story’s progression and anticipating the landmark events, to simply enjoying the ride and the moment, realizing that Max’s life is the landmark success story.

Max fought for accessibility in public transportation, particularly bus and light rail transportation in St. Louis. Yet he was able to influence important people at the national level as co-founder and founding president of the National Council on Independent Living and through his service on boards of other organizations. He won a President’s Distinguished Service Award under George H.W. Bush and served as commissioner on Bill Clinton’s President’s Commission on White House Fellowships, among many other accomplishments.

Max’s activism and passion are exemplified in the successes, struggles, and failures of developing Paraquad, an accessible housing developed by Max and Colleen from 1970. In 1979, Paraquad was formally established as one of ten original, federally funded Independent Living Centers. In that same year, Paraquad opened Boulevard Apartments, accessible housing designed by architect and Starkloff family friend Laurent Torno. It closed in 2001 and in early 2002, Max graciously stepped down from his position at the top of Paraquad, which at this stage needed an administrator rather than an activist. Max continued his pioneering work via the Starkloff Disability Institute. As of April 2016, Colleen Starkloff shares co-director responsibilities with David Newberger, a lawyer and financial administrator who has been on Paraquad’s board since 1981.

Max and Colleen raised three children, one of whom, Emily, died tragically in a hit-and-run incident in May 2008 at the age of nineteen. Max died in his home in December 2010. It is fitting that their lives are memorialized in the final chapter of the book. The reader, while saddened, comes away inspired in the belief that we have to live each day to the fullest. Max was living under a death sentence in the aftermath of his accident in 1959, yet he thrived and experienced a life of happiness despite vicissitudes through 2010.

Starkloff’s story is one of collaboration, friendship, independent living, perseverance, and opportunity, which all came together through a well-developed network. In my accessibility research, I have found that collaboration among stakeholders plays a major role in college student success. Starkloff, through Claggett and Weiss, shows us that networking plays a major role in promoting access and empowering those members of the community who need the most individual assistance to thrive.

I come away from this book feeling that Max Starkloff was not content with simply surviving. He chose to thrive, and make life more accessible for individuals with disabilities. Yet even someone as ambitious and relentless as Max needed inspiration and connections in order for hope to appear. As this is a biography, Max is positively portrayed and his large support team is enthusiastic. But Max was a voice for individuals with disabilities who wished to live independently--many of whom were never able to experience independent living as a reality--and his network proved to be beneficial to the entire movement’s future. This book would serve as an excellent supplemental text in the disciplines of sociology, psychology, leadership, and disability or rehabilitation studies.

If there is additional discussion of this review, you may access it through the network, at: https://networks.h-net.org/h-disability.

Citation: Henry C. Alphin Jr. Review of Claggett Jr, Charles E. ; Weiss, Richard E., Max Starkloff and the Fight for Disability Rights. H-Disability, H-Net Reviews. April, 2016.
URL: http://www.h-net.org/reviews/showrev.php?id=45844

This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.