What is Survivor Advocacy?

“If it can’t be done, don’t interrupt the person who is doing it.” Anonymous

Into many lives, terror and grief resulting from trauma come in an instant, without warning. It then takes a lifetime to come to grips with the ensuing loss. The loss can be the life of a child, partner, parent, family member or dear friend. Or someone survives a terrifying experience, left with scars, either physical or psychological.

A small number of survivors channel the force of their grief or shock into preventive action - so that no one else has to go through “this” again. Among the most persistent and effective advocates are parents who have lived through the death or disabling injury of a young son or daughter. This is certainly not to imply that grandparents, spouses, offspring, or trauma victims are not as powerful advocates. However, survivor-advocates who are parents have been central to some of the major advances in the prevention of injury.

In 1975, Pete Shields became a spokesperson for the newly formed Handgun Control, Inc. after his 23 year old son was fatally shot in San Francisco. Candy Lightner founded Mothers Against Drunk Driving (MADD) in 1980 after one of her 13 year old twin daughters was killed by a drunk driver. Marilyn Spivak founded the National Head Injury Foundation (now the Brain Injury Association) in 1980, five years after her 15 year old daughter sustained a disabling brain injury. In the past several years, parents of children killed by guns have begun to mobilize survivor-led, grassroots public support for rational gun policy.

To this list should be added those survivor-advocates profiled here. All but one lost a child. We tell their stories because we want to celebrate their successes, while appreciating full well that these have come at the ultimate price - the death of a child. The efforts will never bring back the child. However, they work unselfishly to protect other parents from similar excruciating grief.

We want to encourage salaried injury prevention professionals to assist survivor-advocates in their work, as survivor advocates assist professionals in achieving their prevention goals. These stories reveal opportunities for collaboration, and some factors which can strain such partnerships. Each story is unique, yet common threads weave through them.

Remembrance: The loved one is always at the very core of the survivor advocates’ work. Each one honors her or his child’s brief life and strives to give meaning to the child’s apparently senseless death. The struggle for prevention is an act of remembering. The joy and energy which each child had brought to the parent during life now fuels the drive to prevent death.

Passion: Survivor advocates’ work is personal and passionate. These are the qualities that make their message attractive to the media, persuasive to some policymakers, puzzling to many professionals, and aggravating to their opponents.

Singular responsibility: These survivor advocates had an immediate and urgent need to do something now to prevent future tragedies. “If I don’t do it, it’s not going to get done.” The sense of singular personal responsibility lingered even after they joined forces with others working on the same issue. Others might move on to other issues, but survivor advocates usually stay focused on their own.

Colleagues: Many survivor advocates felt like “lone rangers”, at first finding little interest or help in their work. They did not find in others the burning intensity they felt within themselves. However, most were not the first, nor in fact, the only ones working to prevent “this”. These profiles highlight solely the work done by the survivor advocates. The contributions of countless other workers must be left for other accounts.

Fast learning curve: Learning by doing, they quickly became experts in the problem and its potential solutions. They figured out the politics of the issue. None had been trained to be advocates; none had any background in public health, although several had advanced educational degrees. All were smart and resourceful. They often were more knowledgeable on their particular issue than the professionals, but were in danger of being dismissed or barely tolerated as “overly emotional, zealot safety moms” (even if they were dads).

Money and the lack thereof: They used personal savings to fund their prevention work, and this often threatened their families’ financial stability. Lobbying and advocacy is extremely time and money consuming. There are out-of-pocket expenses for travel, telephone, postage, on-line computer searches, office supplies. Particularly discouraging to some was the realization that they often were the only ones serving on committees or attending meetings who were not being paid to work on the issue.

At all costs: The passion for prevention was stressful in many families. Soon everything took second place to it. Spouses and other children suffered, some marriages fell apart. Being totally over-tired became the norm; every spare moment went to advance the cause. But nothing seemed to matter more than the next step to be taken toward the prevention goal.

Every day, every pre-mature death, every disabling injury, creates potential survivor advocates among the dozens of family members and friends who grieve. We hope that the stories presented here will encourage survivors and health professionals to join together to achieve their common goals.