1. People instructed or trained on how to think and what to say; people indoctrinated, researched and led; are not advocates; they are followers.
2. Real survivor advocates for the brain injury community serve only the brain injury community's interests, and not any additional service provider or researchers' interests.
3. Research on human beings needs to be private. People agreeing to be in research are to be studied, to be sure, but with a guarantee of privacy. There is a distinction between protocols in research which are and should ensure the privacy of the research participants, and the function and demands upon advocates, which by the nature of advocacy require that the advocates be public persona. It seems that the two things, research plus advocacy, do not quite belong together. Additionally, study participants should not be manipulated for any political agenda anyone might have and advocacy, by the nature of the thing, involves political agendas.
We survivors of acquired brain injury (abi) which includes traumatic brain injury (tbi) are here at the Brain Injury Network, gathered, to work on our public policy and advocacy agenda. We are working on brain injury advocacy and traumatic brain injury advocacy also. For example, our public policy regarding "post traumatic brain injury" is all about tbi and post-tbi. We work collectively and independently of the government, research community, hospital community and service provider community. There are many venues where brain injury survivors can go and work in conjunction with and under the direction and control and behest of these other interests. However, here, we work as a survivor community on OUR issues, many of which have been and continue to be, ignored or downplayed or de-prioritized by third party stakeholders (such as the associations and the hospitals).
Can survivors be policy advocates? Of course we can. No need to spend money to decide that. It's already a done deal, people. But, unbelievably, there is a current research study on whether or not survivors of brain injury can be trained to be advocates and can be taught system advocacy. It is being funded by a grant from the NIDRR (US government). So, the question is, is it appropriate for the U. S. government to pay for that? Does the government research and bankroll other citizens who are advocating particular political agendas? No. The U. S. government does not pay for political lobbying by anyone else, any other citizens, so why this particular kind of government backing of or intrusion into the advocacy of this one group of people, namely, people with brain injuries, would be OK, we have not an inkling. It seems inappropriate to us that the government would do that.
We think that it is politically incorrect for third party interests or the government to think that it is appropriate to indoctrinate and/or “train” brain injury survivors as to how to be advocates or as to the nature of the advocacy positions we ought to be taking. Frankly, it is not appropriate to study whether or not we can muster an ability to advocate just as it would not be appropriate for the government to undertake a study about whether or not people in a Democratic club, a Republican club, a business special interest group, an ethnic organization, a community organization, or any other group of citizens are capable of being advocates. We have a right to exercise our rights as individuals and to be survivor advocates without the scrutiny or interference of the government. It is inappropriate for researchers at the Mayo Clinic or a couple of mid western brain injury associations (the BIA's of Iowa, Minnesota and Wisconsin) to encroach on our human rights to do our own advocating free of their prodding research.
The more we think about it the more we think that it is simply outrageous to research survivor advocates regarding whether or not we can even be advocates and if we are even capable of being trained (like trained seals?) Additionally, it is inappropriate for these brain injury associations and researchers to decide what our advocacy should be (and since they are preparing the materials, will that not be the case?) We get to decide our policy objectives, not them. We are citizens and human beings and we are entitled to the free exercise of our rights to advocate independent of any research by doctors or others upon us.
We feel that real survivor advocacy comes from the survivor community, not the US government, the medical community, or service providers. But that is the position of some survivors who are independent of the well oiled medical establishment research world. We are able to carry on advocacy independent of service provider organizations and hospital researchers, thank you. We are already doing survivor advocacy. Organizations studying our policy objectives could link to our site if they really wanted to champion survivor matters, but, of course, they almost never do that (although we would like to thank the few that do, the enlightened.) The others just come and read our material, but one gets the sense they are hoping nobody else is reading. Well, we have news for you, lots of others are reading, especially survivors.
Perhaps this research on survivor advocates is done mainly to get money from the US government to carry out training conferences where survivors are taught some advocacy skills and that would be a good thing, but to characterize the whole thing as research on us is demeaning. As for whether or not survivors can be advocates, we are here to tell the government, the researchers and the service providers, well, yes we can be, and we here at BIN already are, thank you.
Another point is even though it might be nice for certain associations to be teaching survivors a few advocacy skills, we still have to be quite cautious regarding that. Survivors attending these trainings run the risk of being indoctrinated into supporting policies espoused by particular third party interests that are holding the "survivor advocate" training conferences. These third party interests have their own agenda and that agenda will of course be what they want the survivors to learn about and champion. For example, agendas promoted at “training conferences for survivor advocates” are bound to include that these survivors ought to become members of particular associations, ought to donate money to these associations, and they also ought to share their survivor stories in the media for the benefit of the conference sponsoring service provider organization(s).
Associations are very interested in tapping certain survivors to be “survivors on display” at association events. This “survivor on display with compelling story” aspect of conferences always translates to lots of donations for the associations that showcase these folks. So, for mainly that purpose survivors have become very important to associations. Well, it is true that there are many survivors who want to share their stories and that this is good for associations and charities. But when survivors participate does their participation ever benefit them personally? We doubt it, but it is a sure thing that their participation will benefit the providers who operate some charity and/or association.
Additionally, most likely any training sessions operated by sponsoring organizations or associations will likely encourage that these “survivor advocates in training” ought to be volunteers for the associations. They ought to, for example, be support group leaders working for free for the associations. (The people running the associations get paid, of course, but not the survivor helpers. Of course not. They get to do the work out of the goodness of their hearts, even though many are living in close to ultimate poverty on disability income, but that part doesn’t appear to matter to the associations that make use of survivors’ time and energy and contacts to help ensure that they, the service providers who run the associations, are paid.)
And when it comes to the number one priority of the entire brain injury survivor community, did you by any chance not know that according to the brain injury associations in the USA, it is cognitive training? At any association-led "survivor advocacy training" conference we believe that it will be made clear that the survivors ought to fall into line and agree that cognitive training services are the end-all and the main priority that survivors all need to work on and support. Bet that the system advocacy that the conferences will emphasize is a push at the system level for payments for service providers who perform cognitive training.
Yes, the number one priority for the brain injury survivors who often don’t have enough to eat, sometimes don’t have a roof over their head, and can’t find a doctor to tend to their basic needs is that we, the survivors, help ensure that the rehabilitation hospitals and psychologists who, by the way, are the mainstays at these associations, and who perform cognitive training, get paid. In case anyone missed it, we are being sarcastic. Yes, cognitive training is an important aspect, but it is certainly not the most important priority for survivors as it is endlessly made out to be by certain third party stakeholders, i.e. the service providers who deliver it.
We think that the people behind this “research on survivor advocates” are looking around for a couple of additional policies to campaign for. Harmless policies. Things that won’t affect their bottom line or rock anyone’s boat, but are “appealing”. We even can see that they are looking over the policies the Brain Injury Network supports. They are fishing for something they can add in, aren’t they, something survivors will like but that won’t interfere in any way with their business practices? Well, it is OK if they adopt some of our policies, the ones they feel that they can use, but we are pretty sure that they will pick and choose the policies they can capitalize on and make use of, and they will ignore additional policies that would be beneficial to survivors but that could in any way affect their business interest bottom line. We know that. We are used to that. But it is also troubling to us that any third party interests will lay claim to our policies, especially if they modify them.
We ask ourselves, since third party interests are studying our policy agenda, and most likely intend to use some of our articulated policies, are they planning to be fair and mention to their “survivor advocates in training” where they got these policies from and who thought up these policies? Will they let their “survivor advocates in training” know that other survivors are already working on a policy agenda and that we are independent of the entrenched hospital research and brain injury association crowd? Probably not. (By the way, survivor readers, you can join in our advocacy discussions and work without having to become a medical study research participant. Please see our SABI forum for information about that.)
We know that third party interests will lay claim to being experts on policies we Brain Injury Network survivor advocates have introduced and espoused. We are pretty sure that they will never mention where the original ideas came from. That is how it is, when someone has their own agenda. Turn other peoples’ ideas into something that can be used to their own advantage. We have no doubt that is how it will be this time either. No one conducting these tbi survivor advocate conferences will ever mention that certain policies are from a survivor led and operated agency, namely the Brain Injury Network. They don’t want those folks they are “training” to know that there is a group of survivors out here in the world who are already espousing brain injury survivor advocacy, and that we have no connection to any service provider entity, hospital research team, or association. This would take away from the power base that these entrenched stakeholders already have, and we are certain that they don’t want that.
Our feeling about the, for example, “traumatic brain injury or TBI” organized research and service provider community, is that they have had total control over the tbi community agenda and discussion here in the USA for decades and they want to maintain that control. Just because they claim they want survivors to be self-determinative does not mean that they really want that. Some of the brain injury associations do not even have survivor councils, so how can they possibly be believed? We have to question the motives of any organization that does not have a survivor council when it says it wants to “promote survivor advocacy”. If they really stood for that they all would have developed survivor councils and opened up their boards of directors to survivors long ago. No, we don’t believe that the tbi associations really believe in promoting survivor advocacy (except where it advances their business agenda), because real advocacy means letting survivors have some real power in their organizations and they don’t allow that.
These people want to stay in control of the agenda. They will continue to spoon feed survivors about the service provider agenda, and how that is the main thing, and really, the only thing, that brain injury survivors need – them. Their services. That’s it. We survivors would be just fine if only they could train us endlessly. That’s all we need. Well, that’s all we need according to them. How sad. How sad for us who want to be independent and who do not want the medical community to completely run our lives for us. Yes, we want their services, but on our terms. We really do not desire to be led around by the nose as to what our policy concerns ought to be.
So, we say that third party stakeholders who are in the business of providing services to brain injury survivors want to stay at the center of leadership. They do not want to share leadership with survivors; that is for sure. In almost all cases, any attempt to look as though they really are involving the survivors is all show, because, ultimately the agenda the agencies have is based on their business and professional concerns and clearly, as far as they are concerned, their needs trump survivor needs. Yes, it is true that some service provider needs match survivor needs. Those issues they point out benefit us. Those couple of issues they doggedly pursue (such as the perennial favorite, "cognitive training") they tout are evidence that they are working on our policy concerns, and many survivors believe that to be the case. (Unfortunately policy makers in government have also fallen for that pitch.)
However, since third party stakeholders at associations, etc. are not promoting properly all of our issues their true allegiance (to their own business interests) is obvious to the experienced survivor advocate. If they really want to demonstrate that they put survivor needs first they are going to have to prove that. The test is whether they will come out and actually espouse policies that might be good for brain injury survivors but in some way negatively impact on their service provider bottom line. So far we have never seen them take a stand that would cost providers a penny, be controversial in some way, or put restrictions or protocol demands on themselves. No, they never do that. Hence, the truth of whom they really represent is very obvious. If they cannot make money off a particular policy they have not supported it, as far as we can see. We have seen that time and time again over the years. They could change. We wait. We wait endlessly. But their primary focus never changes off of themselves as far as we can see.
Yes, service provider organizations want to stay in charge of any agenda for the abi and tbi community and the agenda they want benefits them first with us survivors coming in second or third. Well, at least a few of us know that they are not in the forefront of our survivor agenda. They were trying to ignore these independent efforts by survivors, but it is too big now and they can’t. So, they are playing catch up. The survivor movement is spiraling ahead and lately they trying very hard to interject themselves into it. They would certainly like to get their hands on it. "Survivor advocacy" is a very attractive idea, and survivors engaged in advocacy sounds oh so appealing. Providers can make some points using that. They just have to figure out a way that they can own that concept. So here it comes, they will now train us in advocacy, and they will study us as advocates, and they will oversee our advocacy efforts, and by golly, it is now their thing. The survivor movement just has gotten itself some parents. It has been adopted, or rather, it has been co-opted. However, some of us say no to that. We are already emancipated, thank you. The services of the service provider community to take over or control our brain injury survivor movement are not needed, expected or desired, thank you.
Yes, capitalizing on "survivor advocacy" sounds like a winning strategy, and of course third party stakeholders would like to own it. But, ladies and gentlemen, they cannot own it. Survivor advocacy belongs to the survivors, not to the hospitals, government departments and the service provider community. OK, they are going to get plenty of survivors to jump on their bandwagon, as they always have. But, that will not be our pure spirit, folks.
Could there be a silver lining to this? Perhaps because of survivor communities online and the survivor organization, the Brain Injury Network, at long last the service providers associations are realizing that they have to let survivors in to the decision making aspect of their work. At least they now have to pay lip service. But, at the top, in Washington D. C. at the BIA national, for example, it doesn’t look like anything has changed. If anything, the hospital community has taken even more control of the BIA than it had before with the introduction a couple of years ago of a business council completely controlled by a couple of rehabilitation hospital chains. For years the BIA USA has promised a survivor council. What do we get instead? A business council. That is the reality. That is the real bottom line about the service provider operated BIA. Key figures at the BIA USA are paid by the rehabilitation hospitals to run the BIA business council and to lobby Congress, so whose agenda do you think they are really working on, the rehabilitation hospital agenda or the brain injury survivor agenda? So, thus far there has been no improvement in survivor power at this association, just a lot of show. Just public relations. Underneath it is the same as it ever was.
It could be that things could change for the brain injury survivor community. At least we at Brain Injury Network are making a few inroads. We will see over time. Because, real change, collective change, takes time, even when the cause is just and compelling and true. It will not be stopped. Minds and perceptions must be changed. Not just the survivors, but the providers as well.
Brain Injury Network equals true and unfiltered survivor advocacy. All survivor advocacy. No meddlers with their own agenda. It’s our agenda. It’s the policy we want to see. It’s advocacy by and for survivors. That’s it.
Postscript. On 8-18-10 the Mayo Clinic online description of the NIDRR funded research project (MAP) on training survivors to be advocates included the statement that the research aim of this tbims project was to study "whether or not survivors could be trained to be advocates". As of 8-20-10 that offensive and politically insensitive statement about the Mayo Clinic research is no longer on the site. Now it says they are trying to ascertain what is the best way to train survivors to be advocates. Perhaps somebody is realizing that research is one thing, but advocacy is quite another. People or organizations holding themselves out as spokespeople for our community should never make statements that will undermind or demean our survivor community. People engaged in advocacy on our behalf must be politically sensitive and should not take positions or make statements that might alienate the survivor community. Advocacy means politics. Advocacy means there are political sensitivities to consider. One must be politically correct and politically sensitive if one wants to dive into advocacy. Perhaps somebody has already learned something.
In conclusion, we don't object to advocacy skill training undertaken specifically to help people with brain injuries learn skills to help them negotiate "the system". We do, however, object to research study participants being placed in the limelight. And we object to the idea that people who receive advocacy skills training from some particular agency in order to promote and further particular service provider goals are true (meaning independent and self articulating) advocates for our tbi and abi brain injury survivor community. The study participants are, however, spokespeople for the particular political and/or scientific agenda promoted by whatever agency or agencies are "controlling the agenda" and "controlling the research model".