"Those who do not learn from history are doomed to repeat it."
It’s election season in the US. Some 50 percent of Americans do not vote, and the figure is depressingly higher amongst our population. It would be simple to say that politicians don’t pay attention to us because we are typically chained to our beds on election day, but the issue is way more complicated than that. To understand current affairs, one needs an appreciation of history. A few days ago, my insight came gift-wrapped in the form of Nina Gilden Seavey’s outstanding documentary, “A Paralyzing Fear: The Story of Polio in America,” first broadcast on PBS in 1999.
Polio is a crippling and often fatal illness caused by an infectious virus. It has been around since prehistory, but it was in the early twentieth century that the virus began claiming victims in epidemic numbers. The beginning of warm weather signaled the start of "polio season," with mothers fearing for their children, who were especially at risk.
Fear and ignorance resulted in blame being cast on America’s teeming urban immigrant communities, despite the fact that the illness also affected the well-off. The shame was such that crippled kids were typically shunted off to back wards and forgotten.
The implementation of sanitation and other public health measures had some effect in containing the disease, but that only heightened the stigma. The outbreak of the illness in households typically resulted in suspicion being cast upon mothers. Affected kids were treated like lepers. Those who reintegrated back into the schools had to readjust to lives as outcasts on crutches and in leg braces and wheelchairs.
These were the days of iron lungs, heat treatments, painful physical therapy, and closures of schools and swimming pools.
At age 39, Franklin Roosevelt was struck down by what was believed to be polio. He used his wealth and influence to back a treatment facility and spa in Warm Springs, Georgia. His disability was well-known, but he successfully hid its debilitating effects in public. With steel leg braces locked in place and with discreet support from aides and strategic props, he appeared before crowds and on camera "walking" and "standing." Thus, he succeeded in campaigning for the Presidency four times.
In 1938, the National Foundation of Infantile Paralysis was founded, with the March of Dimes as its fundraising arm. Hollywood celebrities lent their names to the cause, and the Foundation became the main source for funding research and treatment. With the advent of the post-War baby boom, yearly epidemics gained in force, and the Foundation’s work became more urgent. Despite lingering stigma, the public solidly backed the Foundation’s efforts, and lent support with volunteer power and financial generosity.
Thanks to Foundation largesse, Jonas Salk and Albert Sabin were able to pursue independent courses in researching their respective vaccines. Professional rivalry turned ugly when it became evident that Salk was about to strike oil years ahead of Sabin. The scientific community favored Sabin and his vaccine, and Sabin spoke out against Salk. The Foundation was having none of this. Sabin’s vaccine may have been the preferred option, but the next polio season was around the corner. Something was needed now. Accordingly, in 1954, following a successful pilot study, the Foundation funded an unprecedented placebo-controlled vaccine trial involving 1.8 million school children.
The results revealed that those who took the vaccine reduced their risk of polio by about 85 percent. In 1955, full-scale vaccinations were implemented. In 1961, following successful trials abroad, the Sabin vaccine was introduced in the US, and soon became the established vaccine.
Despite the success of both vaccines in virtually eradicating polio in developed nations, the epidemic persists in third-world countries, a shameful case of political and economic will lagging far behind scientific will.
The history lesson for me is that mental illness today is where polio was some time around 1920, when the virus rampaged unchecked, stigma ran high, and science was scratching its collective head. If we are to make any progress with mental illness, we need to figure out what went right in the battle against polio. and get smart about applying what is relevant.
Obviously, compared to the Foundation and the March of Dimes, anything we have resembling a coherent grass-roots patients’ mental health movement is a joke. NAMI and DBSA and other groups perform stellar work in the face of incredible odds, but the reality in the movement as a whole is squandered opportunities, personal and organizational incompetence, fratricidal blood-letting, and inexcusable apathy. To use an expression I picked up in New Zealand, we can’t organize a ****-up in a brewery.
According to a 2003 report by the Treatment Advocacy Center and Public Citizen, the NIH in 1999 spent $2,240.88 per AIDS/HIV patient for AIDS/HIV and $476.26 per lung cancer patient for lung cancer. For schizophrenia, the per patient figure was $74.95, bipolar $25.95, and depression $18.60.
The only politicians paying attention to us are the ones with affected family members and a precious few enlightened others. Obviously, we are doing something wrong. Obviously, we need to start doing something right.
The battle against polio isn’t the only history lesson. We can also learn from the AIDS/HIV movement. Randy Shilts’ "And the Band Played On," should be required reading for every mental health advocate.
Politicians need to start paying attention to us. But it’s not going to happen with you lying in bed. Wake up
Author and Advocate