The Origin of the Term "SABI"
The term SABI, or "Survivor of Acquired Brain Injury" was coined in the spring of 2000 by Sue Hultberg, a tbi survivor in the USA. She sustained a tbi in 1985 when she was a pedestrian hit by a car. After long years of recovery she was able to go to work as a survivor advocate in a brain injury peer support network in California, USA. The name of the agency was the Brain Injury Network of Sonoma County. Some years ago the name was changed to the Brain Injury Network to reflect its more national and now also international survivor mission and scope. The Brain Injury Network is an all survivor advocacy organization dedicated to promoting broad social, civic and human rights policy objectives for persons who have sustained acquired brain injuries. The term SABI has become a rallying word at the Brain Injury Network and is used by Survivor Advocates to designate both our own experience of having sustained a brain injury and our determination and dedication to ABI survivor collective advocacy.
Acquired Brain Injury (ABI) refers to any brain injury acquired after birth and occurs from causes such as tbi (traumatic brain injury), stroke, aneurysm, brain tumor, brain illness, anoxia/hypoxia or other causes such as brain injury from cardiac arrest, poisoning, substance abuse, near drowning, etc. While the term SABI originally stood for Survivor of Acquired Brain Injury, it has clearly also come to mean "Survivor Advocate for the Brain Injury Community", and we affiliated with the Brain Injury Network use it in that context. We use it with pride and purposefulness in both contexts.
Definitions of the Term SABI as used in reference to brain injury.
1. Survivor of Acquired Brain Injury
2. Survivor Advocate regarding Bain Injury
What was and is the rationale for the term, "SABI"?
The rationale was and is that we who have sustained acquired brain injuries are survivors. Being a survivor is something to be desired. We would rather be survivors than the alternative! There is lately an effort by some to discourage us from thinking of ourselves as survivors. Well, in response to that let us state that there are many ways to use the term survivor. It may mean barely eking out a survival. However, WE do not use it that way. We use it to denote our triumph, a triumph of life. We are not defeated. Whether or not we are each individually able to move on from the brain injury, all of us are still survivors. So, it is a positive term for us, not to be demeaned or discounted by anyone, especially anyone who has not been through what we have been through.
We use the term, "survivor" at the start of our identifier, because we consider it to be a very positive word. It describes, in an all inclusive manner, everyone in our community. The key point is that we are people who have survived. We have all survived whether we personally can go on from that point to further renewal. Each individual's circumstances are different. The goals achievable by each individual are different, but the one thing that we all have in common is that we are survivors. That then is our common thread, our common denominator.
So, first, we designate ourselves as survivors. Thereafter follows the reference to our acquired brain injury. Additionally, "brain injury" is only a part of our identity, not our entire identity. So we prefer to be called survivors of brain injury or people with brain injury. We prefer being called survivors of brain injury to being called brain injured survivors or brain injured people, although we answer to those terms as well. Frankly, we would rather be people first, and then this part of our identity, the brain injury, second.
A long time ago some very wise disability advocates determined that using what they called "People First" terminology was a good idea. This idea has been around since at least the 1970's. In many ways the People First philosophy was incorporated into the disability laws that exist on a federal (national) level in the USA. This kind of language and "politically correct" terminology has its purpose and it should not be forgotten by the current generation of policy makers in the non-profit sector, the government sector, the research sector, the public sector or the business sector. Nobody making any statements in our name about us should ever forget that we are people first. And nobody should try to denigrate our use of the term Survivor either.
The Phrase "Survivor + Acquired Brain Injury"
So, we have "survivor" and then we have "of acquired brain injury". That more or less says it, doesn't it? We also call ourselves persons or people with brain injuries, or persons or people who sustained brain injuries. Some of us have made such very good recoveries that we might like to think that we sustained injuries, but have moved on. So to say we are all people with brain injuries (as though brain injuries were always a permanent thing for us) is not necessarily true, although often it is true. It is especially true that people who endured moderate and severe brain injuries may have some permanent issues to contend with, but many people with minor or mild brain injuries come through it. For example, many people sustain minor concussions playing sports, etc., and come through them with no discernable permanent effects, but even then one can never be sure regarding total and complete recovery. It is hoped for, but not always attainable. So, on the one hand we say that one should not automatically be labeled as having sustained a permanent brain injury (if the injury is minor or minimal), but on the other hand one should not be labeled as completely cured after a brain injury (if the injury is more consequential) either. The extent, severity and duration of any brain injury can vary widely. The consequences vary in extent and duration from individual to individual.
To be all-inclusive we must say we survived an injury, because by stating it in that way there is no label that we had permanent brain injury, just that we sustained some kind of a brain injury. Again, many do have permanent injury, but not all in our number. "Survivor of Acquired Brain Injury" is a good term then, because it can apply to people who both underwent the injury and recovered, and those who did not completely recover, and hence, have an ongoing brain injury issue or many issues.
We do not want to use an "impossible for some" term, such as winner or thriver, because some people are not going to reach that state. Some are lucky enough to get to that recovery level, but many are not able to reach it. We do not want anyone made to feel that they should have gotten to that level of recovery because others have achieved it. We do not wish to lay that burden on people. (People with brain injuries have enough to deal with.) We don't want people to feel the need to push for a goal they may or may not be able to reach. We don't want them to become further depressed or disheartened if they are unable to get to a complete, thriving or winning recovery. Each person has his or her own goal to reach within his or her own circumstance, and it is not our place, nor anyone else's, to put expectations on people that might be unachievable or impossible in that person's situation. So, we say, we are all survivors, and those who can recover and/or have the sense they are winners or thrivers, well, that is a good thing, but it is not expected in all cases, nor should it be pressed in all cases, nor should it be held out as being some kind of norm.
SABI Additionally Meaning Survivor Advocate regarding Brain Injury
There is another possibility for using SABI, and that is that it also means "Survivor Advocate regarding Brain Injury". We at the Brain Injury Network use the term SABI in that context. We have introduced and are using this term SABI especially to denote those of us who are now advocates, survivor advocates for our brain injury survivor community. We function independently and separate from organizations operated and/or controlled by service provider concerns such as hospitals, research facilities, professional organizations, universities, for-profit businesses, etc. We are practicing collective advocacy and we strive to bring our policy agenda to the forefront in our SABI advocacy forums. In this context also we use SABI with determination but also humility, as we know that those of us who can speak up and speak out are the lucky ones. We have to be speaking for those who cannot. We have to be a voice for them as well. And we do so knowing that perhaps we do not know every single issue our brethren are dealing with, but we do, collectively, know a great deal of those issues. Who better would know?
We know we woke up and are still here. We know after a great deal of time, healing and therapy that a great deal of our brain function continues to work and sometimes even works well. We know that we came through it, with some bruises, but with a great deal of our cognitive and other brain capacity intact. Many of us are not so brain impaired that we are incompetent although some are. Society needs to understand the vast continuum within our community - some very bright and some very impaired. There are such variations, as in the general community.
We who are SABI advocates are the lucky ones who can serve our community, which includes those who have not woken up, those who can't remember, think, function or operate on the same physical or cognitive level as before. We who represent our community in advocacy and public policy pursuits do so with the solemn understanding we have been entrusted with a duty to serve the rest of our community. We know that there in Persistent Unaware State or Locked-In State or with incapacitating Post TBI Syndrome, etc. but for the grace of God go we.
Anyone claiming that we ought to think past surviving is doing us a disservice. Frankly, what we have to do is think past anyone who would attempt to downplay or demean our use of the term, because for many of us this term is in and of itself a source of strength.
A Little More About Sue Hultberg
Her TBI back in 1985, that is to say, her Traumatic Brain Injury, determined the course of her life. In the mid 1990's she went to work promoting survivor peer support, self-determination, and self and collective advocacy for people with acquired brain injury. It had been ten years since her accident when she studied for and took a Master's Degree in Special Education with her primary focus and interest being special education for adult students with traumatic brain injuries. Her year-long research project, accomplished in 1996, was on the topic of Traumatic Brain Injury Survivors Perspectives: Compensation and Rehabilitation. The study, analyzing the circumstance of brain injury from the survivors' perspective, focused on survivors' satisfaction levels with the types of support and rehabilitation services (family, medical, school, church, etc.) that they had received. The study also looked into whether or not the survivors felt that they had improved over time and also what strategies they used to help them recover. It is available online at http:www.braininjurysurvivors.org.
Ms. Hultberg has served as the President and Executive Director of the Brain Injury Network (BIN), a survivor advocacy national and international nonprofit organization, since 1998. In that capacity she oversees the organization's work on the development, discussion, review, approval and dissemination of a brain injury survivor public policy and advocacy agenda. She also writes the Survivors' Viewpoint articles on the BIN web site. For example, one article is asking the medical community to create a Post TBI Syndrome brain injury classification. Another seeks clear and consistent definitions of abi and tbi. Ms. Hultberg also edits the Brain Injury Directory. Ms. Hultberg is also a moderator of several brain injury survivor social communities on the Internet including the original SABI (survivoracquiredbraininjury) Yahoo group. Ms. Hultberg and the Brain Injury Network also take the position that there has been too heavy an emphasis on research and medical treatments for people with acquired brain injuries, and too little concern for the basic safety net for people with abi (food, housing, basic medical care, etc.) for very fragile individuals Post-ABI.