Who are survivor advocates?

Both words are crucial. A “survivor” is someone who has sustained a personal and traumatic loss. The loss can be the premature death of a family member or close friend. The loss might be a disabling injury, sustained by oneself or a loved one. The “loss” might be of one’s sense of safety or well-being, caused by a traumatic event. An “advocate” is someone who actively argues for a cause. For our purposes, survivor advocates work to prevent any repetition of whatever caused their pain.

Is every survivor an advocate?

No. In fact, it is most likely that only a few people suffering profound losses will channel their grief into advocacy. As is clear from the stories told here, some survivors are self-initiating advocates, and these tend to be the most effective.

Is it possible to recruit survivors to get involved in injury prevention?

Often journalists ask medical or injury prevention professionals to “find them a victim” to personalize a story. It is possible to invite survivors to participate in injury prevention, but it requires exquisite sensitivity. Each person works through grief and heals in her or his own way and time. Depending upon the circumstances of the incident, survivors deal with guilt, remorse, or anger as well as grief. The best invitations for collaboration 1) are offered by someone already known to the survivor; 2) are very specific as to what actions are requested; and 3) are very easy to decline without bad feelings. There are differences between survivors who are willing to tell their story to the media and those who become true advocates. Survivor advocates are extremely knowledgeable about the problem, and go beyond personal experience to argue passionately for solutions.

What can injury prevention professionals do for survivor advocates?

Survivor advocates are catapulted into this work without training about goals, objectives, or methods of injury control, although many are skilled in other areas. They tend to have few institutional supports. Money is always a problem. Here are some ways to assist:

•  share expertise in goals and methods of injury control;
• share personal networks, help make contact with key experts;
• share “fund-finding” expertise (finding sympathetic foundations, publicizing government grant opportunities; sharing nuts and bolts of grant writing);
• create consultancies and small contracts, if goals are shared and money is available;
• let them use office machines (copy, fax, scan, telephone, etc.) and if possible, office space.

Is it easy to work with survivor advocates?

It is impossible to generalize here. The advantages are numerous. The partnership creates a powerful alliance of authenticity with expertise. However, working with the emotion, passion and single-mindedness of many survivor advocates can be time and energy consuming. Good working relationships become more personal than is common in professional collaboration. Although there are notable exceptions, it appears easier for women than for men to be and/or partner with survivor advocates.

“The role of advocate does not come easily to many scientists. Yet often it is only by taking on this role that we can turn our special knowledge about the causes of injury into public policies that will prevent injury.”

Susan Baker, The Charles S. Dana Award for Pioneering Achievement in Health.