Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of the Brain Injury Network Policy dated 12-28-09
What Makes a Good Brain Injury Survivor Advocate:We at the Brain Injury Network recognize that there are many survivor advocates working to help our community. What makes a good, or even excellent survivor advocate? In our estimation there are many factors which help make a survivor advocate a particularly valuable steward of and/or instrument of our community. Here are some attributes that are helpful.Many of us strive to demonstrate these qualities, because we know that having these qualities will help us be better advocates. But, like our policy agenda, these attributes are not always easy to achieve. They are goals in themselves. Perhaps all of them are not attainable by each and every survivor advocate, but these are qualities and/or credentials we each one of us can strive for, except the first one, which is to be a brain injury survivor. That one we didn’t want, but we have it nonetheless. If you can avoid being a survivor of an acquired brain injury altogether you can skip the rest of the list. Here then are some qualities that help make an effective survivor advocate.
1.Survivor. A person who is a survivor advocate must have sustained a brain injury, the kind of brain injury that laid him or her low for quite some time. Generally speaking, a SABI did not spend an hour or two at the hospital after a slight bump on the head. No, a SABI is someone whose life as he or she had known it, was taken away due to the brain injury. SABIs have spent months and even more likely years rehabilitating from brain injury consequences. SABIs had lost their ability to think properly (to cognate) for long stretches of time, sometimes even months and years.SABIs have had to dig deep, very deep, to determine their strengths, and their strengths have carried them through to new vistas.Also, SABIs have had to develop strategies to overcome deficits. Let us just say that in life a SABI’s metal has been tested.
2.Acknowledgment of the Brain Injury. SABI people admit that we have had a brain injury. We don’t work cautiously and secretly behind the scenes for the community. We tell the world about our brain injury. We know that going public about personal injury will bring us some stigma, because in the current world many will judge survivors as being less, as being different or as being abnormal. But survivor advocates must take that trade-off in stride. We have to confront the stigma head-on. We have to show the world our face. We have to familiarize the world with who we are. We are people, and we have goals and objectives just like everyone else.
3. Brave.We survivor advocates will stick our necks out on issues that may be unpopular with other people, for example, third party stakeholders who are pursuing business interests over the interests of individuals with brain injuries. We will take a stand and fight for it to the best of our abilities. We will not shy away from controversy if the debate is going to benefit our community.
4. Careful. We survivor advocates are careful to act in a safe way. We will not jeopardize our health or the well being of ourselves or other people in our community.When we conduct activities or events we will put safety first for our friends in our community and for ourselves also. We will not put demands on our community that will tax our community or its members financially, physically, or otherwise.
5. Dedicated. Survivor advocates are compelled and motivated to work for our community. Sometimes that requires a bit of personal sacrifice. However, we recognize that we have a duty to work to the best of our abilities and to work diligently.
6. Experienced. The best survivor advocates have insight because we have a long track record of working for the community.
7. Integrity.SABI people are fair-minded and honest. We are people who have sustained brain injuries, but we still have the ability to make sound judgments and moral decisions. Some survivor advocates are even better able to follow the Golden Rule than some nonsurvivor human beings.
8. Knowledge Base. Survivor advocates seek out, study, and learn topics that have to do with our community. Where feasible, SABI people will gain technical-level training in some field related to brain injury, in order that we have useful and accurate knowledge to share with the community or on behalf of the community.It might take extra years from the norm to gain that knowledge and training, but SABIs undertake that anyway. It might be difficult to learn, remember and retrieve information from the mind sometimes. But there are those compensatory strategies, such as taking good notes, calendaring, and keeping as organized as possible, that make it possible for many people who have sustained a brain injury to function once again.
9. Positive. Survivor advocates put a positive light on our situation wherever possible. SABI folk have the ability to use humor as well as logic to push for our positions. SABI people try hard to work with others to bring positive change to our community.
10. Respectful.SABI people are thoughtful and kind to others. SABI people listen to and value the opinions of other people with brain injuries. SABI people work together.
11. Vocal. Survivor advocates speak up and speak out for the community.