Harriet Johnson: Woman of Valor
Harriet McBryde Johnson was a woman most Americans never heard of. Yet, she was well known to 51 million disabled Americans and their families. Her life story is almost unbelievable. Johnson was born with a degenerative neuromuscular disease and never wanted to know exactly what the diagnosis was. She attended schools for the disabled and was always feisty. Her sister Beth described how “ Harriet at 14 tried to get an abusive teacher fired; the start of her hell raising!”
In her memoir, Johnson recalled that when she was in her teens, she watched a Jerry Lewis muscular dystrophy telethon. It had a reverse effect upon her and she turned against “the charity mentality” and “pity-based tactics”. She referred to herself without pity as “a jumble of bones in a floppy bag of skin”. Johnson loved “zooming around” the streets in her home town of Charleston, South Carolina in a battery-powered wheel chair. She graduated from Charleston Southern University in l978 and earned a master’s degree in public administration from the College of Charleston. She then pursued a law degree which was granted by the University of South Carolina School of law in l985.
With her education completed, she set up a private practice, representing the disabled in court, lobbying legislators and writing books and articles. Her mantra was: “The presence or absence of a disability doesn’t predict quality of life.” On April 22,2001, Johnson rolled into the auditorium at the College of Charleston and shot into national headlines. Peter Singer, a philosophy professor at Princeton, was giving a lecture titled, “Rethinking Life and Death”. He had drawn protests with his belief that parents and doctors should be allowed to kill newborns with drastic disabilities, like the absence of higher brain function or an incompletely formed spine. He disagreed with letting “nature take its course.” He said that infants, like other animals, are neither rational nor self-conscious.
Johnson had been sent to the lecture by Not Dead Yet, a national disability-rights organization. She took the microphone during a question and answer period after Singer’s lecture and confronted him. Later in The New York Times, she wrote, “To Singer, it’s pretty simple: disability makes a person ‘worse off’. Are we ‘worse off’? I don’t think so.” She added, “We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own.”
As a result of her challenge in Charleston, Johnson was invited to debate Professor Singer at Princeton on March 25, 2002. That debate and the original confrontation in Charleston were the subject of an 8000 word New York Times article, bringing Johnson and the disability rights movement national attention. Laura Hershey, a disability rights activist, commented, “Millions of people by now have read that article and dozens of people have told me, ‘Wow, I never thought about it that way.’” In November 2003, Johnson wrote another Times Magazine article, “The Disability Gulag”. In it, she described institutions where “wheelchair people are lined up, obviously stuck where they’re placed” while “a TV blares, watched by no one.” She called for a major change from institutionalizing disabled people to publicly financing home care provided by family, friends and neighbors. “ I sometimes dare to dream that the gulag will be gone in a generation or two. But meanwhile the lost languish in the gulag.”
On June 25, 2008, The House of Representatives passed the amended Americans With Disabilities Act (ADA) to expand civil rights for the disabled by a 402 to l7 margin. Lawmakers said they wanted to restore broad protections that Congress had intended to establish when it passed the Americans With Disabilities Act in 1990. The 1990 law said “individuals with disabilities are a discrete and insular minority”, and the Supreme Court had cited this phrase in different decisions since then as a reason for limiting the definition of disability. This phrase was deleted from the new bill which calls for disability to be “construed broadly” to cover more physical and mental impairments.
The 1990 law prohibited an employer from discriminating against a qualified individual who had, or was perceived as having a disability, defined as physical or mental impairment that “substantially limits” one or more major life activities. In 2002, the Court had said, “these terms need to be interpreted strictly to create a demanding standard for qualifying as disabled.” A person has to have “an impairment that prevents or severely restricts the individual from doing activities that are of central importance to most people’s daily lives.”
The new bill passed by Congress would establish a less stringent standard, describing an impairment qualifying as a disability if it “materially restricts” a major life activity like seeing, hearing, eating, walking, reading or thinking. Lawmakers said that people with epilepsy, diabetes, cancer and cerebral palsy have been denied protection because the diseases could be controlled by medication or were in remission. The proposal changed that standard, stating that “an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.” It also said that courts in general should not consider the effects of “mitigating measures” such as drugs, hearing aids and artificial limbs.
Representative James Sensenbrenner, Republican of Wisconsin, a major sponsor of the bill, said that the Supreme Court had “chipped away at the protections” of the l990 law. Representative Jerrold Nadler, Democrat of New York said, “thousands of men and women in uniform are returning from Iraq and Afghanistan with serious injuries, including the loss of limbs and head trauma.” He stressed that changes to the l990 law were urgently needed. The Senate passed a similar bi-partisan measure with Senator Tom Harkin, Iowa Democrat, leading the effort.
The amended ADA gave people with disabilities greater access to courtrooms, theaters, hotels, stadiums, retail stores, swimming pools, play grounds and golf courses. More than seven million businesses and government agencies were affected by requirements, including: ramps or lifts into auditoriums and courts for wheelchair accessibility, the location of light switches, the height of retail service counters and the use of “service animals” such as dogs in public places. The Justice Department said the need to make the environment more accessible was greater because the Iraq war was “creating a new generation of young men and women with disabilities.” John Wodatch, chief of the disability rights section of the Justice Department looked at the entire population when he said “Disability is inherent in the human condition. The vast majority of individuals who are fortunate enough to reach an advanced age will benefit from the proposed requirements.”
Harriet Johnson died on June 7, 2008 at age 50. Her lifelong advocacy for the disabled, built support for the amended ADA law when it was debated and passed . She would have been proud of the Congress, the Justice Department and the President for expanding the rights and protections for Americans with disabilities.