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About Us
A Brief Overview
Survivors, Advocates, Leaders
The BIN, the first and foremost brain injury survivor nonprofit organization in the world, commenced in 1998. People who have sustained acquired (which includes traumatic) brain injuries started this agency. On this, our official survivor-produced and operated web site, and additionally on many other sites and social communities, we herald our human and civil rights movement, share our survivors' perspective and viewpoint with the world, discuss our advocacy efforts, and publish our public and other policy positions. We are voicing the kinds of policies that tbi and other abi survivors would like to see implemented. We are abi advocates. We are tbi advocates. We also network with individuals in our global community. Additionally, we encourage that more attention be paid to the safety and privacy concerns of people with brain injuries.
We're on a voyage together. Let's make it count for something.
— Susan C. Hultberg
Founder & President
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The Brain Injury Network (BIN), an advocacy organization operated for and by survivors, is an international and USA national association of persons who have sustained acquired brain injuries (ABI). We have been in existence since 1998. The brain injuries are from traumatic brain injury (TBI), stroke, brain tumor, illness (such as Encephalitis, Meningitis, etc.) and additional causes. Other terms associated with survivors in this association include [the proposed by us] Post-Traumatic Brain Injury Syndrome (PTBIS), blast brain injury, brain aneurysm, hypoxic/anoxic brain injury, cerebral hemorrhage, severe brain injury, skull fracture, head trauma, brain trauma, coma, concussion, Post-Concussion Syndrome and Mild Traumatic Brain Injury (MTBI). We also wish to be in spirit with survivors with Locked-in Syndrome or in a Persistent Unaware State also called Persistent Vegetative State, or PVS (although this particular term is a rather harsh term and we would rather that Persistent Unaware State be used).
The BIN is operated by educated acquired brain injury survivors who have been through it. Since there is a need for our voice for ourselves, we at the BIN endeavor to provide this voice. We speak out for ourselves individually and collectively. We also speak out for those of us who perhaps cannot speak out. We network with each other to develop a consensus on issues of importance to the collective brain injury survivor community. We are promulgating our public policy platform on state, national and international levels. We continue to develop further public policy issues which may be accessed by topic on this website. We have a Board of Directors which meets quarterly in Santa Rosa, California, USA. We have been meeting as an organized, incorporated, nonprofit survivor community since 1998. The Board is compromised of survivors of various kinds of acquired brain injuries. Several survivors on our Board of Directors are professionals who have advanced degrees. The Executive Director, who has a M.A. (in special education) and a J.D. (in law), also sustained an acquired brain injury.
The public policy of the Brain Injury Network is generated, reviewed and approved by our Board of Directors. These policies we have developed represent the kinds of policies that we would like decision makers in the public arena, such as government entities, elected representatives and additional policy makers, to champion on our behalf. We also operate survivor acquired brain injury (SABI) global advocacy forums online. Our Internet membership is international in nature; however, the majority of survivor advocates participating reside in the USA.
We have organized to be a voice for our community. We do so despite commentary from some service providers who think that they speak for us and that they know what is best for us. We also think it is folly for any service provider organizations to claim that they and they alone speak for us. We appreciate the selfless dedication and expertise that most service providers offer to our community. However, our point of view does not always match their point of view.
We have learned over the years that when it comes to the issue of brain injury or the issues of people with brain injuries, caregivers, service providers agencies, and the public at large, often speak from their own perspectives and frames of reference first and our survivor point of view second or even third. Unfortunately, on many issues, providers and caregivers do not appear to understand or properly address our issues. Unfortunately, we have found that they are not even aware of many of our issues and concerns. Additionally, they do not always consider issues that we find to be high priority worthy of discussion, legislation, protocols, services, interventions and/or funding.
Well, we do consider our issues and views to be important in the grand scheme of things. We, just like everybody else, want our views and concerns to be recognized and heard. We want policy makers to take notice of what the survivor community has to say. We would like priorities, laws, protocols and services that have to do with us to reflect our concerns.
As a community, we expect service providers to operate programs with the highest standards, to act ethically, to be properly trained and to be accountable. If and when we uncover crime, dishonesty, misrepresentation, lies, or other conduct or programming that negatively impacts our community, we will talk about it. We, as an organized community, will not tolerate any kind of mistreatment of persons with acquired brain injuries. We insist on equal justice and fair play for our community.
We must be dogged and steadfast in our method, both in our personal recoveries and in our relationships with any service provider entities. If we see problems that have not been corrected, we will point them out, in perpetuity, until any problems we have noted have been corrected. This is another way that BIN serves and protects our brain injury community.
Many of us have great physical, motor, communicative, sensory, cognitive and other issues to deal with. But collectively we are strong and thus we work together to help each other and protect our community as a whole from any individual, service provider, agency, institution, or educational institution that has harmed or shows by intentional, reckless or negligent conduct a propensity to harm any one of our number. On a local level, we are a survivor-driven support agency that operates in Northern California. We facilitate meetings and offer emotional support. We provide information and referral services, advocate on behalf of survivors and watchdog in our community to help insure that people with brain injuries are not victimized.
As individuals within the organization, we also benefit from the friendly, healing, happy environment we endeavor to maintain at our meetings and within our organization. Substance abuse, profanity, illegal conduct, acting out behaviors, or hateful conduct are not permitted or tolerated at meetings. So in the spirit of cooperation and affinity, friendships have formed, and many good times have been had. It is in this spirit of good will that we attempt to help each other deal with brain injury, its aftermath, our recoveries, and our changed lives. In conclusion, we are organized abi survivors. We have organized at this non-profit organization to disseminate our policy agenda. We are a voice for our community. We represent abi survivors worldwide. We network in a global online social community. Our Survivor Board of Directors spends a great deal of time working on our policy issues. Our policy agenda is here to read and to cite. If you repeat or use our ideas please remember to cite the Brain Injury Network as the source. Thank you for reading.
