This message is reprinted annually on theAmerican Independence Day.Our efforts continue.
THE BRAIN INJURY SURVIVOR AGENDA
A year ago today (July 4, 2008) the Brain Injury Network (BIN) published its first Independence Day message. The Brain Injury Network is a US national and international organization operated for and by survivors of (abi/tbi) brain injury. It was formed in 1998. Here is a brief report as to one of the activities of the BIN in the last year since July 4, 2008. We published numerous public policy statements that have been generated from the survivor community itself. These policies were discussed, reviewed, and approved by our survivor Board of Directors. These policies may be viewed at on this site. There is a public policy index of topics on this web site. The public policy topics range from the subjects of campaigning for national standards for postsecondary educational programs and a national helmet law, to voicing concern over housing arrangements for survivors, the need for community supports for survivors, disclosure of conflicts of interest of “advocates,” and transparency in the operation of organizations and associations that “advocate” for us.
You see, there actually is a survivor agenda and it is distinct from the medical community agenda for us. However, the brain injury survivor agenda has been buried by the overwhelming dominance of the association and medical community perspective. When you talk to survivors they aren’t talking about the great need for medical research. They are talking about finding an economical, accessible, living arrangement; finding a doctor who will take Medicaid; arranging for benefits when they can’t think straight; or getting someone to help them balance their checkbook ---those types of things. But these issues are barely addressed by the associations so involved are they in putting on medical conferences and steering people to the particular providers (hospitals, rehabilitation facilities, legal firms, etc.) that are affiliated with the associations.
One of the main problems over the years is that the “brain survivor agenda” has been co-opted (taken over) by associations that mainly represent the interests of the medical community. Many of the important issues of the survivor community have been completely ignored by the medical community. The allusion all of these years has been that we survivors were being properly represented by these medical interests and the associations. Well unfortunately, that has not really been true. We cannot even make a dent in their thinking about what our vital concerns were and are. As far as they are concerned the medical aspect, the research, clinical trials, payment for cognitive rehabilitation, etc., are the most important things. There appears to be very little room in their advocacy for the rest of what we need.
One way that makes clear that the associations really serve the medical community first is that the associations are completely dominated by medical and other professional interests. Survivors are rarely asked to serve in the management level or at the board level of the associations. Yes, there are some token survivors here and there, but there has not been an effort to make sure that survivors participate in every association or on every board. The main value of survivors to the associations is as being a draw at conferences as survivor speakers. Survivors can tell their sad, yet inspirational, stories. Survivors are also enlisted to walk in walk-a-thons to raise money for the associations. Sometimes survivors operate support meetings under the association banner, a job for which they aren’t being paid. The staff people are paid though. Why is there this two-tier system of the “haves” (staff) and the “have-nots” (the survivor volunteers)?
Additionally, each association does not even have a survivor council. Apparently there is a bone being thrown out that having a “mild brain injury survivor council” at the national is under consideration. Oh, for perhaps ten years now it has been under consideration. How many years does it take to get a survivor council? What is the holdup? Why are they dragging their feet? Is it because they don’t actually want input from a survivor council? Is it because they don’t want to be accountable to a survivor council? Is it because they like the way it has always been with these staff people and medical people in charge of thought for us? Is it because they wish to continue to speak as though they really do speak for us?
When survivors are excluded from the decision-making process by the policy makers our viewpoint and our concerns are ignored. This does not strengthen the survivor community. This does not empower us. This is not the way to help us. When we survivors are discounted by the associations in this way and made to feel worthless it actually is harmful to us. They cannot really believe that they speak for us and advocate for us, do they?
Because we had this experience with the associations, we have had to publish our concerns ourselves via this one nonprofit entity of survivors, the Brain Injury Network. It is an instrument whereby we can actually have input and garner support for our varied needs. Therefore at this point that is how we have resolved to carry forward, independent from a network of associations that do not truly represent our needs or policy objectives. This is not to say that what the associations do is not important also, because it is; it is just not indicative of the complete range of issues that we want brought to the forefront.
I will never forget the conversation I had with a man at the nation brain injury association a couple of years ago. He told me flat out that survivors couldn’t operate a non-profit. Survivors wouldn’t be able to do that. Don’t bother sending him our policy concerns because he already knew everything there was to know. He had heard it all from survivors before. I wasn’t going to say anything that he didn’t already know (according to him). Don’t bother anyone at the Brain Injury Association, he told me. He was to be my only contact, and I was not to bother anyone else there.
Imagine my shock at being handled in this way by this public face of the Brain Injury Association. I couldn’t believe it. I am a survivor, it is true, but I am also a trained professional who has operated a non-profit for people with brain injuries many years. The idea this fellow at the BIA national could speak to me that way was a real eye opener. I suddenly realized that no matter how far I have come since my devastating injury 24 years ago, I was never to be anything but a survivor to him, someone who wouldn’t be able to do much of anything. It made me feel sick to my stomach. I felt personally touched by the stigma of having a brain injury in a way I had never felt it before. And this came to me courtesy of this representative of the national Brain Injury Association.
I could see how the Brain Injury Association was actually contributing to the stigma we face by having one of their top people display an attitude about me to me like that. No matter what my experience, knowledge base, or work level, none of that mattered. I was just a lowly incapable survivor to this guy. And this is the kind of people they employ over there. I must say that I have heard several other bright survivors who are in the survivor movement say the same thing. They were brushed off by the Brain Injury Association. So, I know it is not just me.
I faced this same kind of thinking (many years ago, circa 1998) from a local rehabilitation facility. The administrators could not believe that survivors could do much of anything. They did not believe that survivors could be on the Board of Directors at the Brain Injury Network. Well, they were, and they are, and that is how it has been. We managed to do it, have survivor input at the highest levels of our organization, so I don’t see why the associations can’t do it also.
But let’s look at it from their angle. It is true that some survivors are very much incapacitated and need to be protected and guided forevermore in life. These providers have made a career out of providing that protection and guidance, and so they understand that subset of our brain injury survivor population very well. However, and here is where they do not get it, it is also true that there are many people with brain injuries who are sophisticated, educated, erudite, professional, and despite some physical problems with seizures, paresis, balance disorders, tinnitus, headaches, fatigue and other long-term manifestations of brain injury, can be of great service to the brain injury community. The associations should make use of these people instead of taking a condescending, off-putting tone with such people.
Additionally, it is time for the associations to have survivor councils. It is time for the associations to publish the names of any board members who are survivors. It only perpetuates the stigma of “brain injury” that some associations will not name the survivors they have on their boards. Perhaps the reality is that they really do not have survivors on their boards or working as staff. This is one reason why the vast majority of our concerns have been ignored by the associations. They don’t have full knowledge of all of the issues. Well, we at the Brain Injury Network are trying to help them out by publishing policy on the many issues they have ignored all of these years.
SURVIVOR RESEARCH PARTICIPANTS
Incidentally, legislative policy makers, such as the Congress of the United States, listen to the associations. The associations work in concert with the medical community, the hospital systems, state government entities, and at the U. S. national level, the National Institutes of Health, and the Departments of Education, Health and Human Services and Defense. They all work together on the machine which is medical research. It’s nice that all of this is going on, but we have noticed some problems with that machine. For example, there is a problem with protecting the privacy of survivors. We have noted that no one worries about the security, privacy, and confidentially of participants who are now being sought out on-line by the mammoth, government-backed, research machine. The associations if they really were on our side would have voiced concerns about this issue. They haven’t. That is just another indicator that they don’t see every issue that impacts us. We are not the top concern. We just aren’t. The system as it has stood all of these years bears that out.
This is probably enough to chew on for one Independence Day message. Thank you for reading.
Susan C. Hultberg (TBI in 1985)
Brain Injury Network President and Executive Director (1998 to the present)