Brain Injury Survivor
For Our Community and Collective Advocacy
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This site is for our acquired brain injury survivor community and especially for individuals in our world-wide and USA national community who want to participate in collective-advocacy.
Susan C. Hultberg, the author of this website, invites you to read her book, Brain Injury Advocates.
Definition of Terms Acquired Brain Injury is also called ABI. It refers to any brain injury that transpired after birth (some authorities say after the age of three). (However, it does not apply to Degenerative Brain Disorders such as Alzheimer's Disease or Parkinson's Disease.) ABI refers to any acquired brain injury from such causes as traumatic brain injury (tbi), stroke, aneurysm, brain tumor, brain illness (examples: Encephalitis, Meningitis), anoxia or hypoxia of the brain (example: heart attack led to oxygen deprivation in the brain, and caused a brain injury), chemical injury (examples: drug overdose; poisoning). There are additional causes of acquired brain injury. These listed are the most frequently seen. Traumatic Brain Injury is a sub-classification of Acquired Brain Injury. It is also called TBI. There are many other names associated with TBI such as coma, diffuse axonal brain injury, closed head injury, penetrating head wound, open head wound, head trauma, skull fracture, Mild Traumatic Brain Injury (MTBI), moderate brain injury, severe brain injury, catastrophic brain injury, and Post Concussion Syndrome. There are additional syndromes associated with brain injury including "Locked-In Syndrome", "Minimally Conscious State", ""Persistent Unaware State" and "Vegetative State". It is important to note that the word "traumatic" in the definition is referring to the cause of the injury, not the ultimate psychologically traumatizing outcome from the TBI. Please refer to medical authorities for further information about these technical topics. Survivors of Brain Injury are persons who have survived some kind of acquired brain injury. We prefer that to the alternative. Brain Injury Survivor Advocates are persons who have chosen to advocate regarding being a person with a brain injury. Some advocates practice what is termed "self-advocacy". Brain Injury Survivor Advocates involved in "Collective Advocacy" as used in the context of the "Brain Injury Survivor Movement" have organized to collectively advocate for the entire community.
Some ABI (which includes TBI) Survivor Sites You Might Like to Visit:
Survivor (of) A Survivor Advocacy
A Survivor-Operated
Advocacy by Brain Injury Survivors Our Cause on Facebook
Survivor (of) A Survivor Advocacy
Research from Our Point of View
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| Why We Need Collective Advocacy |
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We Survivors Speak Best Regarding Our Issues and Regarding Advocacy and Public Policy Involving Our Brain Injury Survivor Community We survivors who are educated and partially healed must work collectively to bring issues of importance to the attention of both our own community and the outside world. We know that many survivors are not ready to become brain injury survivor advocates, but some are ready and willing. Some of us who have already organized feel that the impetus for change must come from us and not from the traditional service provider controlled associations and such in order that our own purely survivor driven message be clearly enunciated and communicated. You see, thus far most of the debate regarding our issues has been in the hands of third party stakeholders such as hospitals, rehabilitation hospitals, medical researchers, government departments, associations controlled by service provider interests, and others. Because this is the way it has been, many of our issues have been ignored or inadequately explored or addressed. A lot of this is because we individuals with brain injuries have sat back and allowed third parties, who have their own business and other interests, to define what our issues are. Consequently most of the advocacy on our behalf has revolved around medical research and medical interventions. This is likely because the third party interests which represent these interests have had the money and prestige to completely dominate the discussion regarding what is best for brain injury survivors. But that has meant that many additional important issues have not been adequately championed in government circles, in the media, in survivor online communities, etc. The only way we will ever bring our additional issues to the forefront is to bring them up ourselves. Some survivors attempt to do that in our own blogs and on our own websites and such. We speak about the lack of a safety net for the most vulnerable in our community. We speak about our inability to get adequate medical and other services. We speak about having lost our jobs, homes, family, spouses, bank accounts, skills and former self-identies. We speak of our isolation, our personality changes, and our physical and cognitive issues. We speak about being denied workers compensation for clearly job related brain traumas. We speak about our inability to find accessible, affordable housing. We speak about the difficulty finding good, specialized, medical care, and access to medical devices and assistive technology that could help. We speak about the impossibility of finding a job or being able, due to the circumstances, to work at all or to function to our former capacity and level. Quite a lot of the time we are speaking about our inability to get the services, support and help that we need in our own local community. So, it is not as if some vocal survivors have not spoken out, because many of us have. But frankly, as individuals "speaking out" we are just cogs in a gigantic wheel. We must be organized. So, because of all of these issues and many more, a truly organized survivor collective advocacy effort is really quite necessary. Such an effort has been necessary for some time whether or not “funding” can be secured to sustain such an effort. Some of us have already organized to deliver public policy recommendations on topics of importance to our community. We may not get too much attention, but we are delighted to be of service and inspiration to our brain injury survivor community. And in certain ways our organized community has had an impact, and we do see that our efforts are helping improve the world for people with brain injuries. Just the fact that we are here and speaking out is significant and we know that our ideas and input have already produced results that have helped some people in our community. I am one of those survivor advocates attempting to bring forth the entire range of issues, and not just hand-selected issues that benefit particular service provider interests such as cognitive training in rehabilitation hospitals. My SABI life has not been easy. I am a survivor advocate along with many other survivors at the Brain Injury Network. We are survivor of brain injury advocates for our brain injury community. We have become vocal about our issues, because there is no one, better than we, who can truly expound on what it is like to be one of our number, and we feel strongly that no one else can truly define our issues. Additionally, too many agencies that are supposedly there advocating for us and in our name have failed to adequately address many of our issues.
Brain Injury Survivors Are Organized and Producing Public Policy and Position Statements How are we bringing our issues to the forefront? We have organized at a nonprofit organization entitled the Brain Injury Network. At the Brain Injury Network, which we created and we define as a survivor advocacy organization, we have developed position statements in the form of public policy pronouncements regarding many topics. These issues are brought forth by members of our community, and our completely "survivor of brain injury" Board of Directors approves the policies we champion. We are interested in advocacy, human rights, and political action. We continue to speak out and hope that our brain injury survivor collective advocacy efforts will help our large community. If you would like to read more about our public policy and advocacy platform, please visit http://Braininjurynetwork.org/publicpolicyindex.html If you are a Brain Injury Survivor, perhaps you would like to be involved at our organization. Sue Hultberg, M.A, and J.D. (TBI Survivor, 1985)
Musings |
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Survivor of Acquired Brain Injury What does that mean? It means you were one person, and then in some manner your brain was injured, and now you are a different person. Maybe you were in a car accident; fell off a ladder, roof, or skateboard. Maybe you went down at the ice skating rink, or down a flight of stairs, or off a street curb, or off of a horse or motorcycle. Or maybe you got hit in the head by a baseball bat, bullet, or clinched fist. Maybe an object, such as a crane, box crate or garage door, dropped on your head. Did a vehicle make contact with your head, i.e. "pedestrian vs. motor vehicle" accident; motor vehicle perhaps meaning car, bus, truck or even motor boat? Maybe a bomb went off in your vicinity and you had a blast injury. Those are all tbi's (traumatic brain injuries.) The doctors said you had a mild, moderate, serious, severe or catastrophic brain injury. Skull fracture? Maybe yes and maybe no. Closed head injury? Head injury, head trauma, or diffuse axonal head injury? Diffuse axonal sheering injury? Penetrating head wound? You were in a coma (or not), had a concussion, and/or now have "post concussion syndrome". All possibilities. There is a lot of medical terminology our doctors use to describe the different scenarios. Or maybe you had a stroke, formerly called a cerebrovascular accident (CVA) and now sometimes called a brain attack or acute ischemic cerebrovascular syndrome. Maybe it was a cerebral hemorrhage, for example a subarachnoid brain hemorrhage. But then again maybe it was an aneurysm. Or, could be you have or had a brain tumor? Was it that you had a heart attack and there wasn't enough oxygen to your brain for awhile? So was it an anoxic or hypoxic brain injury? Perhaps you almost drowned, were hit by lightening, or were exposed to high levels of carbon monoxide, for example, from a faulty heater. There are all kinds of novel ways to experience a brain injury. Or did you contract some kind of a brain disease like meningitis or encephalitis? Maybe you were bitten by an insect (say, for example, a tic) and you had Lyme disease, and it affected your brain. Then there is brain injury courtesy of alcoholism or drug addiction. That can happen, too. Maybe there wasn't enough oxygen to your brain during an operation. Could be you underwent chemo therapy and now have "chemo" brain. Were you were exposed to too much lead or mercury or pesticides? Anything toxic in the human body, too much of it, can cause an injury to the brain. Perhaps you started with a TBI but because of it you subsequently contracted an infection like meningitis. Or maybe because of the TBI you suffered a stroke. Maybe you had a stroke and blacked out, took a fall, and clunked your head when you went down, so you have had both a stroke and then a tbi due to the fall. There's such an assortment to choose from, such a smorgasbord of ways to have "acquired" your brain injury. The point is that you are now a member of the acquired brain injury survivor community. Maybe you have been a member within our community for a few days, weeks, months, years, or even decades. If it's only been a few days or weeks, congratulations if you are already back to where you can (1) get on the Internet and (2) read this.
Our Survivor of Acquired Brain Injury Community Well, here we are then. An ever misunderstood community. An ever suffering community. Politically speaking, a community that is woefully underrepresented. We are a community of many sad, depressed, confused, deflated, defeated, struggling people. But we are also a community with many feisty, determined, defiant, spunky, upbeat, fun loving, hard working, happy, mellow, empathic people. In other words, we are just like the general community of humanity. There is a lot of variety within our acquired brain injury survivor community.
Loss of Former Self Sometimes you think people around you don’t understand. You know that they miss the “old you”, and of course, you miss the “old you”, too. We all change over time in life; just some of us have to change a great deal more than what one would have thought in the normal course of life events.
Formation and Appreciation of the New Self Eventually, and that takes a very, very long time, you get used to the new you, that is, if you are lucky, and if you want to. Starting over, reinventing one's self to deal with the new circumstances, finding new ways to go about living; these are all part and parcel of getting on from a brain injury.
Hidden Disability (If you should be so lucky?) Sometimes other people can’t even grasp that you had a brain injury, unless you tell them. You might want to say, I wish they could “see” it without me telling them. But no. That would be worse, if they could grasp outright, because of obvious visual cues such as you in a wheelchair or on a cane or walker, why you sometimes are forgetful or repeat yourself or get off-balance or dizzy. There are plenty of people with really more severe brain injuries, and everyone can tell with them, but don’t wish that one on yourself, more of the obvious trappings, even more trouble then you’ve already got, just so that other people will “understand” better. Just count your lucky stars that you aren’t that bad off, lucky sister (or brother - oh brother!) Don’t worry so much as to whether or not other people “will understand”. You understand. Don't you? I mean, someone did point out to you that you would be having lingering issues (didn't they?) Anyway, you know, or at least you are coming to know. And, for sake of argument, let us say that your family knows and your doctor knows. Society may not know, but at least, hopefully you have three out of four "who know". On the other hand, it might make you mad that they know, those that do. Sometimes you'd rather nobody knew. Other times you wish that the folks around you understood better than they do. This is the paradox for us. On some levels, we need people to know, but in other ways we don't really want them to know. This is just one of the quirks that we now have to deal with. We've just got to accept that some people will get it and some people will never get it.
Function Levels Just do what you have to do to function to your own optimal level, you brain injury survivor person. Be in control of your environment so that you may function to the best of your ability. Find your comfort zone and maneuver in life from there.
A Purpose for You
Get Understanding As in two ways. 1. Internal. Get understanding of what is going on around you and in your head, mind, body and spirit due to this brain injury. 2. External. "Get" understanding to other people, family, friends, caregivers, service providers, agencies, institutions and governments as to what is going on around you and in your head, mind, body and spirit due to this brain injury.
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