The Brain Injury Network is in and of itself an abi survivor advisory council and also a tbi advisory survivor council, seeing as how we here are all brain injury survivors. When we include our SABI advocacy forum, the first actual all survivor brain injury online advocacy forum (that has been operational since 2006), we are one rather large and organized international and USA national brain injury survivor advisory council. This is because we have a membership that includes people with brain injuries from all over the world.
There are many brain injury advisory councils in the USA, but traditionally they have had a 90% to 100% membership that consists of people other than brain injury survivors, such as service providers, family members, government bureaucrats, etc. One of our delineated policies is that we would like every entity or organization advocating for us to have survivor representation in the form of a survivor advisory council and/or survivor participation on the entity or organization's Board of Directors or other governing body.
Either a survivor advisory council or board participation by actual brain injury survivors used to be a very rare occurrence in almost all agencies and organizations. However now more and more entities are opting into having survivor participation at the management level, and we appreciate that. Even more, we people with brain injuries expect that.
There are many capable survivors willing to serve at the various organizations and entities that focus their efforts on our community, and no entity should be allowed the excuse that they have good reasons for not having any survivors in their policy making team. For example, they should not get away with saying, either publically or privately, that no one with a brain injury could possibly serve (because we every one of us is too limited, according to them). Also, they should not be allowed to state that the reason they do not have survivor participation is that they wish to "spare survivors the stigma" of being identified as having had a brain injury. These rationales are examples of prejudice and stigma. They are not legitimate excuses for denying people with brain injuries representation at the senior level of brain injury advocacy agencies.
Particularly when it comes to traumatic brain injury, we have been demanding for years that the tbi brain injury associations, etc., that purport to represent us, have tbi survivor board members or at the very least tbi survivor advisory councils. There are now some tbi advisory councils with actual tbi survivor members all over the USA, although there need to be plenty more of them. Additionally, it is really not playing fair when an entity advertises itself as having a tbi advisory council, but there are no actual tbi survivors on the council. Very unsportsmanlike, that.Seeing as how it is now the year 2010 and there have been tbi advisory councils in existence in various localities for at least ten years, (one or two maybe even have been around 20 years), nobody (as is currently the case) should be claiming that they have just now (in 2010) created the first one.
We at BIN and SABI see ourselves as a Survivor Advisory Council At Large. We see it as part of our mission to advise the broader community around the world of our brain injury survivor community's priorities, our expectations, and our consensus on issues. We are offering our counsel in the form of our advocacy and public policy position statements. We hope you will study and act upon what we say.
If you are a brain injury survivor and you would like to join us as a survivor advocate (SABI), please see our SABI Advocacy Forum.