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
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
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
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
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