.jpg)
The Brain Injury Survivor Movement (July 4, 2008)
"Now here is the revolutionary concept: When it comes to the survivor self-advocacy movement, only survivors should be involved. We welcome others as partners in coordination with our movement as long as the lines are delineated. We welcome their participation in helping us as long as it is not at the center of our own movement. Their place is as a partner in our movement, not in the center of our movement."
1. Nonsurvivor-led agencies and individuals should not operate shell “survivor” social networks that are in actuality operated behind the scenes by service providers, but if they do operate them it must be with a full disclosure as to their true nature. They should not characterize themselves as survivor organizations, ever, if they are actually operated by service providers.
2. Survivors have an expectation of privacy. Survivor advocates who are involved in policy making for our community, I would hope, will be willing to forgo their right to privacy in order to serve the whole community.
3. Agencies that are controlled by service provider stakeholders must not try to control our movement.
4. The survivor acquired brain injury movement must maintain its independence.
.jpg "Survivor Movement July4, 2008")
July 4, 2008
Shell “Survivor” Sites, Expectations of Privacy, and Independence for the Survivor Acquired Brain Injury Movement
The brain injury survivor community should be able to be self-defining, self-expressive, and self-determinative. Yesterday someone from something new entitled “xxxxxxxx.org” solicited on one of the survivoracquiredbraininjury (SABI) Internet boards for people to join their great survivor brain injury social network. It turned out that people participating at that location are classified as “patients.” One of the members is the “researcher.” On further review, it became clear that this “social network” was developed by a private company that specializes in “developing new products.” (Oh, it’s new all right; it is purporting to be a survivor community, but it appears that it is actually some kind of research device for somebody who thinks they can tap in on the survivor movement.)
Firstly, we should not be defined as a disability category. We are people. This labeling of us is inappropriate. Do the enterprising people who have just set up this [web site] not understand the “people first” philosophy? (Obviously not.) It is so very clear that they are attempting to capitalize on people’s natural psychological need to have their own social community. I would say that it appears that these people are using the survivor sense of community to promote their own business and professional interests. I also disapprove of research on us being done in a public venue such as an Internet social network. Soliciting on other sites to pull people over to a so-called survivor social network that is actually operated by service providers is flat-out unethical. And, displaying the participant “patients” on an open website is unethical. Not to mention that there are the constraints of the HIPAA Law (Health Insurance Portability and Accountability Act) which apply to medical researchers.
Let me make it clear, I have no problem whatsoever with research studies that will benefit us. However, there are criteria on how studies are conducted, and any legitimate researcher will know that and comply with research standards that have been set up by various research associations, professional societies, and universities. One of the most important components of a research project is that the privacy of the human research subject be respected. This doing research in the guise of a survivor social network is completely unacceptable.
Additionally, occasionally other companies that counsel nonprofits or other businesses have visited the Survivor Acquired Brain Injury (SABI) forum and/or the Brain Injury Network, and it is clear that they are interested in tapping into our philosophy. (Incidentally, for people who do not know, the Brain Injury Network has a survivor Board of Directors, and is a survivor-operated, non-profit advocacy organization for people with acquired brain injuries.) We think that they want to capture our spirit. They are interested in the procedure, not necessarily the substance, of what we say and do. They want to know how we do it. They aren’t focusing on what we say we want and need. It appears that they are concentrating on how to imitate our procedure and our style. Psychologists, researchers, social workers, and national or state advocacy agencies operated by service providers have no business attempting to copy our format or make off with our spirit.
These nonsurvivor-operated agencies say they are there to help us and advocate for us. The problem is if they are “in charge” of every single aspect of our movement they are making it harder for us to be self-determinative, self-expressive, and self-advocative. There is an important place for such agencies, but it is not at the center of our own self-generated, survivor movement. Every time they try to take hold of our movement, they are doing us a disservice. There is plenty of room for them to lead in the traditional venues they have dominated, all of the medical, professional, and legal venues. However, they need to accept and acknowledge that we are here as well, and that we are not some junior partner in our own movement. There is room for many players. We survivors, as the center of the brain injury community, have a right, need, and desire to speak for ourselves, not just singularly, but collectively, outside of a well-entrenched system controlled by service providers.
But now I must go in a different direction regarding privacy for people with brain injuries [and further articulate] when privacy might be expected and when privacy should be waved. I believe that the presumption should always be that survivors have an expectation of privacy. But I do draw a distinction between program participants in early stages of recovery or involved in research studies and survivor advocates who lead. Privacy of program participants (e.g., clients, students, patients, study subjects) must be strictly guarded at all times. However, if and when a survivor voluntarily and knowingly waives his or her right to privacy, no one should stand in the way of that. The key is that it is the survivor’s determination, and that the survivor is able to make his or her own informed decision regarding whether or not to “go public” about his or her brain injury.
Let me now argue to you survivors out there that anyone who wants to participate in advocacy and public policy determinations for our community, anyone who wants to lead in some fashion, for example, by serving on a Board of Directors, ought to be willing to disclose his or her brain injury to the world. (It is still a survivor advocate’s right to say no to coming out publically about his or her injury though, of course.)
We who are the advocates can’t hide behind anonymity. People who are advocates have to step up and say that we are survivors. We are here and we have nothing to be ashamed of. As a matter of fact, we have a lot to say about our community and our community’s needs, and we are going to say it. And we expect agencies operated by service providers to pay attention to what we say and act on what we say.
I have noticed that many survivors are expressing themselves very well on their own blogs, web sites, in books, in articles, in interviews, and in social groups operated by survivors. Many. I do not see survivors wanting to hide in the shadows while big advocacy agencies operated by service providers define our policy platform. The only people who have ever said to me that survivors shouldn’t be “labeled” and identified as having had a brain injury are service providers. However in my view, if somebody wants to be or is a survivor advocate, he or she has to come out of the shadows. There is nothing embarrassing about being a survivor of brain injury. Having survived a brain injury is something one can be proud of. We are enduring. We are making our lives in spite of it. And the larger world needs to see that, so we have to show them by shining through in spite of our disabilities.
Any organization that will not reveal who are its survivor board members is doing us a great injustice. The organization might say that they don’t want to “label” such survivor board members. This looks more like a pretext. It leads me to think that it is more than likely that there are not any survivors serving on the board. Therefore I say, said agencies cannot legitimately claim to represent us. However, it is possible someone with a brain injury is serving and keeping his or her injury secret. I say, however, that if you are really interested in having survivor advocates on your board, find some survivor advocates who are willing to acknowledge their brain injuries. They make better representatives for our community, because they do not need to conceal their injury from the world.
Secondly, when agencies claim to be representative of the larger, more inclusive community, which includes survivors, family caregivers, and service providers, then all three of these categories must be included in the leadership positions (Board of Directors) of said organizations. It must be clear from reviewing the Board of Directors list which directors fall into which category.
It’s not enough to hire a private consulting organization and have it put together a so-called survivor forum or organization which is truly controlled behind the scenes by some service providers somewhere. That is really underhanded. I also find it shocking that any agency that collects money from survivors would pay a consulting firm to figure out how to create a survivor forum board.
I am today reminded, it being the 4th of July (American Independence Day), of the Boston Tea Party. Remember? “No taxation without representation.” That works well for we survivors also in any agency that purports to represent us.
Now here is the revolutionary concept: When it comes to the survivor self-advocacy movement, only survivors should be involved. We welcome others as partners in coordination with our movement as long as the lines are delineated. We welcome their participation in helping us as long as it is not at the center of our own movement. Their place is as a partner in our movement, not in the center of our movement. They cannot be at the center of our movement. They dominate too much. Their focus is not the same as ours. We must have the freedom and distance to build our own movement. And we are. And some appear to be frantic about that, and don’t like that, perhaps because they are used to being center stage on behalf of us. (Hence private consulting companies that “develop” ideas and products on behalf of non-profits or other businesses come calling to analyze the Brain Injury Network web site.)
Let me reiterate, when agencies in the hands of professionals, service providers, or other third-party stakeholders attempt to tap in to the survivor spirit and the survivor movement that hurts us. As I said, we survivors must be center stage in our own movement.
Service providers already dominate the medical, legal, professional side of the brain injury world, as well they should. When they are speaking from their professional vantage point they do have superior medical, legal, and other professional knowledge. And we do need to learn from them, and listen to them, and receive services from them. We do need to be their patients, students, clients, etc. But when it comes to the survivor self-advocacy that is for, by, and about us, alone. That is our side of it.
Any intrusion by service provider professionals, no matter their lofty credentials, is an unwelcomed intrusion on our essence and spirit. This side of it should be left to us. This is our essence. If they tap and try to control this side of it they are defeating the most important purpose, which is to see to it that we stand on our own feet and live independently, proudly, with our heads held high as people in this world with something to contribute and something to say. Our own thing. No interference from these nonsurvivor people on what the survivor movement should be about, thank you. However, we welcome them to learn from us about the substantive policies we want, and we welcome them to help us get these implemented as policy, protocol, procedure, regulation, and law.
If advocacy agencies for us had a healthy portion of survivor participation on their boards of directors, I would have less to complain about. That doesn’t mean one in twenty is a survivor, an unnamed survivor. That doesn’t mean two in twenty. However, even if there are several survivors on a board, if the board is dominated and controlled by service providers who represent particular business or financial interests in their decision-making on our behalf, then that is a conflict of interest. Again, that is why we need a completely separate, no-conflict-of-interest survivor movement to balance off any agencies dominated by service providers. I hope this doesn’t come as a shock to anybody, but there are often distinct differences in the priorities of service providers and the priorities of people with brain injuries!
There is an aspect to all of this, and it is called equality. It is not that we, the organized survivor community, have to run things by the organized service provider community. In actuality, it ought to be the other way around. When they are speaking for us, as they so often do, they ought to be running what they are doing in our name by us. And when we offer up ideas and solutions, we expect them to implement what we say we want and need. Put us first. That is the only way I will ever accept that these advocacy agencies have our best interests at heart, and [that they] really do speak for us.
In closing please let me repeat:
1. Nonsurvivor-led agencies and individuals should not operate shell “survivor” social networks that are in actuality operated behind the scenes by service providers, but if they do operate them it must be with a full disclosure as to their true nature. They should not characterize themselves as survivor organizations, ever, if they are actually operated by service providers.
2. Survivors have an expectation of privacy. Survivor advocates who are involved in policy making for our community, I would hope, will be willing to forgo their right to privacy in order to serve the whole community.
3. Agencies that are controlled by service provider stakeholders must not try to control our movement.
4. The survivor acquired brain injury movement must maintain its independence.
Susan C. Hultberg (TBI in 1985) Brain Injury Network President and Executive Director (1998 to the present)
Brain Injury Network President and Executive Director (1998 to the present)
.jpg "The Brain Injury Survivor Movement")