Brain Injury Advocacy by and for People with ABI which includes TBI
Advocacy is the act of supporting or arguing in favor of an issue, idea, cause or person. We are of the opinion that survivors of brain injury are able to advocate on behalf of ourselves, individually. This is called self-advocacy. We also believe in collective advocacy by and for our survivor community. Collective advocacy is the process by which we people with acquired brain injuries organize, formulate, collaborate, reach consensus and articulate for our collective brain injury survivor community's interests. The Board of Directors of the BIN (founded 1998), which is comprised of brain injury survivors, has worked on an advocacy and policy agenda for the brain injury survivor community for many years. We survivor advocates at BIN additionally collaborate on our brain injury forum. SABI serves as the social community arm of the Brain Injury Network. The SABI (commenced in 2006) was the first entirely survivor operated collective advocacy forum ever developed on the Internet. The express purpose of the SABI from the start was to encourage, initiate, develop and promote a brain injury.
Clearly, the Brain Injury Network and SABI serve as a longstanding strictly survivor voice for the brain injury survivor community. We recognize that there are other imitators now arriving on the scene, but they would do well to study what we, after long years of interaction, reflection, discussion, experience and expression have already surmised and published. Additionally, we note that some of our terminology, such as our term for ourselves "survivor advocate" is being folded into the content of the more traditional, service provider dominated entities. We are delighted that certain entities are at long last acknowledging that we survivors wish to be central in advocacy that pertains to us.
But, back to the survivor brain injury advocacy that has been going on at the Brain Injury Network for over ten years now. One product of our brain injury survivor collaboration is the public policy section on this website. The section spells out some particular policies and protocols that we believe will be in the best interests of our community. In other words, our policies and advocacy indicate the kinds of policies that brain injury survivors would like to see implemented by the public sector on our behalf. The survivor community has many concerns and priorities. Please study our position statments. Please initiate and carry out policy that will promote our policy positions.
We would like organizations not to harvest patient data about us for profit, especially without our knowledge or consent. We would like folks to pay attention to our survivor priorities. We put the safety net for survivors as the number one priority ahead of cognitive retraining by rehabilitation hospitals (although that is important also). We would like helmets on children, and adults also, in activities such as bicycling, skiing, etc. We would like every association operating in our name to have survivor board members or at least a brain injury survivor advisory council in operation. We have so many, many concerns. As of 11-20-10 we have over 70 policies on these and other topics. We invite you folks who have not had a brain injury but insist that you represent our concerns to read them. That is our advocacy. Our ideas.
One of the saddest things for us to see is people coming to this web site to see what kind of advocacy we do and clearly not studying the policies. If you want to understand our community you cannot do it by just looking at this section. You must read the public policies - all of them - if you and your agency or association or business really want to advertise yourself as (a kind of) expert on our issues. We are not able to go to Washington D.C.; Toronto, Canada; Adelaide, Australia; London, England, Paris, France; etc.; to speak to government leaders. We are not able to hire lobbyists from the BIA as did certain rehabilitation hospitals in the USA. We are not traveling around to conferences, on book tours, etc. We are not bankrolled by hospitals, rehabilitation hospitals, doctors, lawyers, etc. We do not have the time or the energy or the health or the means to conduct walk-a-thons to raise money for association staff salaries or “awareness campaigns.”
What we can do, and we do it best, is express the concerns of our brain injury survivor community most of which have been for decades ignored by associations purporting to speak for us.
Another sad thing is seeing service providers visit this site and pick off key phrases of what we say (probably to look as though they really understand the issues of the survivor community). Said service providers and agencies then take those concepts and use them in a different way to promote their own agendas and/or businesses. Sometimes it is even worse, where service providers rebuke what we promote. For example, we have been saying that we are brain injury survivors. So now certain entities are promoting that "surviving is not good enough; get past that to thriving” (implied: only we service providers can help you attain that goal). Allow us here at the Brain Injury Network to state once again that we use the term survivor as a badge of honor and it is indicative of our struggle and our triumph. We do not use the term to mean that we are barely eking it out. You service providers who promote that you have something to offer “past surviving” should realize that this is not a chess match where certain agencies figure out ways to outdo others. If we call ourselves survivors, that is our choice. No service provider agencies should pronounce that that is not acceptable.
It is also unfortunate seeing certain entities such as brain injury associations cater to us in certain locales, for example, using the term "survivor" when it meets their needs but in other locales downplaying the value of that term (when it suits their needs). So, if said agencies are somehow involved in a survivor site in that venue they brag about that. However, when interacting with doctors or in other venues they sing a different tune and go so far as to demean the use of the term survivor. Here is what we say to said service providers, you either accept the term survivor, or you do not. On all of your venues. In all contexts. Stop playing both sides as a method of strategy. It is hypocritical.
Additionally, we would really appreciate it if service providers operating these associations and businesses would understand that you really do have a lot to learn. Spending five minutes on this site is not enough if you truly want to learn. You would have to spend hours studying the material here in order to actually understand, that is, if you really want to understand past your particular business interests. So, do us a favor and spend that time. You may not agree with our ideas, but you owe us to at least review the material if you truly want to think that you actually speak for people with brain injuries. Better yet, when one of our policy concerns applies to your business operation, please recognize that and take any corrective actions we have suggested. Look past your own business and to the greater good. Protect we people with brain injuries in all that you do. Don’t go around selling us as a “wonderful business opportunity.” Don’t share information about us without our clear knowledge and consent. Don’t entice us to share our most intimate stories on your public web sites to help you generate business. We are not a commodity. We are people.
However, that said, we also recognize that service providers have their own concerns, no matter what the survivor community has to say, and it may be asking too much of providers to expect them to agree with or campaign for the actual survivor agenda. That is a reason why we have to be here to truly bring to light the survivor community agenda. No one else ever did do that. Also, we must explain to all readers that one cannot accept, on the face of it, that service provider entities speak for the survivor community. We have some issues in common, that is true, but not all of it. When we see that the service provider agencies never speak up for us on any issue that might affect the business community’s bottom line, we know they aren’t truly representing us. One example would be that we would like more transparency on these so-called sites developed for us. We don’t want patient data harvesting. We don’t want private, confidential information plastered all over the Internet. And, in schools and hospitals and even doctor’s offices, we would like more protocols. These are the kinds of issues that it appears to us have been ignored, totally, by entities that are representing business interests more than survivor interests.
So if you happen to be a reader from some other venue, for example, a government department; a school district; a university research department; or the press; please note that our only master here at the Brain Injury Network is the brain injury survivor community itself. Our only goal is in articulating what is in the best welfare of our own community. We do not have to weigh any business advantage. We do not have to fall in line with what some business stakeholder controlling our agency says they want. This is because we are not beholden to any other stakeholder or business interest. We are all survivors here and what we have here to share with you is the pure survivor agenda. We hope you find value and understanding out of reading here.
People may be curious as to whether or not we share our ideas off of this web site. The answer is, yes, we do, as our limited resources allow. We haven’t explained how else we share these ideas off of this web site. We have distributed several concepts and plan to do more of that in future. However, a lot of what we do is by word-of-mouth and by readers coming to this site. We appreciate it if you are here reading. So, if you have managed to read this far, well, right there we commend you, as you are way ahead of the crowd. If you want to know more we recommend that you read the public policies. (Those are our “position statements.”)
Historical notes about this page: This first version of this section was published on this website in late 2008. (See the 2008 version.) The next version was published in 2009. (See the 2009 version.) The current version (above) was published on May 18, 2013. This just goes to show that brain injury advocacy is an ever-evolving topic.