Death & Life

Dr. Steven E. Brown and Gonzales Brown, Co-Founders of the Institute on Disability Culture, in the United States, has written a biographical description of a friend Danny Blake, who lives with Cerebral Palsy and AIDS and provides a cogent analysis of living and dying with a disability. First published in "Mainstream: Magazine of the Able-Disabled," September 1995. Internet publication URL: www.independentliving.org/docs3/brown95b.html.

It's time to talk about death. Not only the sad and unexpected deaths of our heroes, role models and friends like Ed Roberts, Irv Zola, or others of the currently aging crip generation, but the messy reality of living with disabling conditions that lead to the inexorable reality of life's end.

Two years ago we entered a very quiet Tucson, Arizona house. A hospital bed dominated the living room. On it lay a gaunt, dying man. Steve knew him only as Lew, the partner of Lillian's friend, Dan. We spent a couple of hours with Lew and Dan and then went on about our lives. Days later Lew was dead--another casualty of the AIDS virus.

During the time that has passed, Dan Blake has become a friend to both of us. We've gotten together many times, but it is never enough. He, too, is dying of AIDS.

Dan's death will be a tremendously sad occasion for many people. For others it will pass unnoticed. But Dan, like Ed, Irv, and so many others must be remembered--for their remarkable lives and impactful deaths. Dan stands about six feet tall, with shimmering brown hair and mustache, and glowing eyes. He moves gracefully, sometimes slowly, with the caution of someone who has lived a lifetime with Cerebral Palsy. His speech can be a bit difficult to understand--a characteristic exacerbated with the advancement of AIDS.

His life mirrors that of so many of us with disabilities, who convey part of ourselves to the world-at-large, while hanging on to an inner self that few outsiders would recognize. Dan participated in Tucson's Cerebral Palsy (CP) Foundation, earning a reputation as a fundraiser extraordinaire who once raised half-a-million dollars at a society gala. But much of his life was lived in secret. Dan closeted his homosexuality from employers, co-workers, the community.

In 1994, the CP Foundation wanted to honor Dan by changing its name to the Blake Foundation. When approached with this idea, Dan assented only if the Foundation would willingly and publicly acknowledge that he was gay and had AIDS. They agreed.

What qualities did Dan possess that enabled him to come out of the closet so thoroughly that a traditionally staid bureaucracy like a CP Foundation would voluntarily associate itself with a gay man with AIDS? Steve sat down with Dan on March 30, 1994, and turned on the tape recorder to find answers to these questions. He did not. Dan's story, like his life, truly surfaces not from himself, who is modest in his perceptions, but from his friends, who recognize his gifts.

Dan's saga began in Ohio in 1950. In timelessly classic fashion his family delivered the mixed message that God both created him the way he was for a special reason and that belief in God would cure him. Taken to numerous revivals, he demonstrated an early rebellion at the age of six when he walked out of a tent never to return.

Dan's early education involved both a special school and an Ohio country school where he was the only person with a disability in the entire system. He endured being teased and beaten, then accepted. Dan speculates that initially he may have been feared as different, but as he became more familiar he was less scary.

As a college student at Arizona State University Dan intended to become a lawyer. During his sophomore year, his adviser unequivocally informed him that his goal of law was unrealistic because his speech was unintelligible. That very day Dan switched his major to social work, where he became so successful that he earned a full scholarship to attend graduate school at the University of Chicago.

In the Windy City, Dan first acted upon his homosexuality. Within six months of coming out he lost sixty pounds and for the first time in his life became proud of his appearance. After graduate school, Dan headed for San Francisco's gay Mecca, unaware of the area's emerging status as a home of disability rights.

Dan arrived in 1977. While Ed and Judy Heumann and others staged a sit-in at the federal building demanding issuance of 504 regulations, Dan survived for months cleaning houses. No one wanted to hire a person with CP. He finally obtained a case manager position at San Francisco's CP Foundation. He describes this job as the beginning of his own disability enlightenment. The job also gave him an opportunity to combine his knowledge with his compassion.

Awareness of his own sexuality heightened from his Chicago experiences helped Dan identify a pervasive denial of sexual awareness within the CP Center. He began to take time during his lunch hours, evenings, and weekends to spend time with individuals and groups to discuss sexual issues and identity.

The response was so positive he volunteered to teach a course on human sexuality. About this time Lillian met Dan. He saw within her someone whose potential was untapped. He suggested that they co-teach a class on sexuality to people with significant disabilities, including mental retardation. Lillian's career soared from this beginning to work at Berkeley's Center for Independent Living, Planned Parenthood, and the World Institute on Disability.

During the 1980s Dan experienced an exhilarating time of career advancements, social successes, and life partnership with Lew. In the mid-1980s, after many years with the Oakland Tribune, Lew retired and the couple relocated to Tucson.

Lew intended to pursue a dream of becoming a realtor in the Arizona desert. But that never came to be. Shortly after their move Lew acquired a seemingly undiagnosable illness. Dan worked at the University of Arizona Medical Center.

Unlike San Francisco, Tucson did not seem to be hospitable to coming out as a gay man. Dan kept his gay lifestyle secret from his new colleagues and community. Caring for Lew became a lonely job, hidden from his co-workers, unmentionable in his new volunteer activities, and still unidentifiable. The couple finally decided to return to San Francisco to see if they could find a diagnosis. They did. Lew had AIDS.

They returned to Tucson where Dan still cared for Lew mostly in silence. Although part of the gay and lesbian community he was unable to participate openly for fear of losing his job. Lew, almost until the day he died, refused to recognize the seriousness of his illness or his impending death.

During these years, while more than one hundred friends have succumbed to the AIDS virus, Dan still found the time and energy to volunteer with the CP Foundation and counsel youngsters with CP.

Today, many of his closest friends are near death. His own illness is advancing rapidly. Yet Dan talks about AIDS as a positive aspect of his own life and community.

AIDS has mobilized the gay/lesbian community to work toward attaining civil and human rights. It has forced him to slow down. While he knows he has a limited time he still wants to have an impact, but it has become much more urgent to him to save his energy for himself and his friends--to make a personal, rather than a social, difference.

The Blake Foundation is not only a Tucson institution but an accurate depiction of an individual whose unconditional love and constant presence has quietly, but firmly, enriched many lives.

Dan is an unsung hero, not interested in public acknowledgement. And that's a shame. Because he serves us all. Dan faces death with the same forthrightness he has demonstrated in life, with both joy and sadness sharing his ups and downs living and dying with AIDS, as he has done with living with a disability in an ableist world and living as a gay man in a closeted society.

We all have enormous tasks ahead. We constantly have to talk about living with disability in a way that enables the public to know that we value our lives. We cannot discuss our lives with integrity unless we are also willing to confront our deaths.

Perhaps that is Dan's quietly thunderous legacy for us all.

 

Postscript: Thanks to the AIDS cocktail, Danny (as he now insists on being called) is healthier, working, and still alive.

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