Promoting Brain Injury Survivor Self-Advocacy and Collective Advocacy
ABI: Acquired Brain Injury
This is a general category for the topic "ABI: Acquired Brain Injury ". "Acquired Brain Injuries" are just that - acquired. Thus, ABI is a term which encompasses the brain injury subcategories traumatic brain injury (tbi,) stroke, brain tumor and brain illness. All of these types of brain injuries are acquired; thus they are all in the larger category, ABI. Often in the (medical) classification of brain injury, one sees the following "trees" that lead to ABI category brain injuries: "Diseases and Conditions>Neurological Disorders>Stroke" or "Diseases and Conditions> Neurological Disorders> Brain Trauma", or other tree branches which commence with "Disease and Conditions>". Therefore, in this directory, to see more information about specific types of ABI, see also under "Diseases and Conditions." See also the related categories shown below.
There is confusion regarding the definition of abi. This is the definition of the Brain Injury Network, a survivor organization, but there are many other definitions. Definition of Acquired Brain Injury (ABI): An acquired brain injury is an injury to the brain that has occurred after birth, but is not related to congenital defect or degenerative disease. Causes of ABI include (but are not limited to) hypoxia, illness, infection, stroke, substance abuse, toxic exposure, trauma, and tumor. ABI may cause temporary or permanent impairment in such areas as cognitive, emotional, metabolic, motor, perceptual motor and/or sensory brain function. (Please note our policy statement regarding this definition.)
August 1, 2006: Brain Injury Network (BIN) is calling for a system of regulation, review and standards nationwide for utilization in college and other post-secondary disability programs. The Brain Injury Network, a survivor-led and operated association of people with acquired brain injuries from traumatic brain injury (tbi), stroke, tumor, illness and other abi categories, is advocating for national standards for acquired brain injury programs at colleges and universities. Indeed, international standards are needed. But since the Brain Injury Network originates in California, U.S.A., we are first calling for standards to be implemented in the United States of America.... It has dawned on us that new laws are needed to protect adults with cognitive challenges who attend colleges all across the United States. Topics: Regulation, Review and Standards For College and Other Post-Secondary Level Disability Programs Are Needed National Standards Regulation of College Disability Programs Review of College Disability Programs Public Access to Information about College Disability Programs
Article on Brain Injury Advocacy from the Brain Injury Network web site. BIN is an abi survivor advocacy organization. "We also believe in collective-advocacy by and for our survivor community. Collective-advocacy is the process by which we people with acquired brain injuries organize, formulate, collaborate, reach consensus and articulate for our collective survivor community's interests.... Our advocacy reflects our concerns and spells out some particular policies and protocols that we believe will be in the best interests of our community. Please study our position statements. Please initiate and carry out policy that will promote our policy concerns. Thank you."
SABI means "Survivor of Acquired Brain Injury" and also "Survivor Advocate regarding Brain Injury". This term was coined by abi survivor (and tbi survivor) Sue Hultberg in the year 2000. The term is used as a rallying term for survivor advocates who are associated with the Brain Injury Network, an international and USA national brain injury survivor advocacy non-profit organization that operates from Santa Rosa, California. The Brain Injury Network hosts several SABI advocacy forums online. SABI advocates are interested in the creation and dissemination of survivor public policy. SABI advocates think in terms of a survivor-driven agenda.
This online social community is dedicated to bringing people with brain injuries together to work collectively on public policy and advocacy concerns of our surivor brain injury community. In addition, the SABI network provides a social and peer support gathering point on the Internet where attention to privacy concerns is more important than produciing a public archive forum which may be seen by all. SABI is not interested in disclosing survivor stories for advertising or securing some form of profit. SABI does not harvest "patient data". SABI does not sell member information nor does it seek commercial endorsements.
This web site concerns itself with the worldwide traumatic brain injury (TBI) survivor community, a robost and vibrant community of individuals who have sustained some kind of traumatic brain injury. The site honors TBI brain injury survivor leaders. "Many people have been members of our community a long time and have worked hard on behalf of our TBI survivor community. Please see our TBI Survivor Honor Roll, which we intend to expand over time." There is a discussion of the early history of the "TBI Survivor Movement", sometimes referred to as the "Brain Injury or Acquired Brain Injury Survivor Movement". There are also discussions of the causes and forms of TBI. TBI is a subset of ABI (acquired brain injury). To help survivors understand the difference between traumatic brain injury and other types of brain injury, information about other kinds of brain injury is also included. Additionally, criteria which helps tbi survivors evaluate online brain injury or tbi social communities is also included. The author of the material is Susan C. Hultberg, J.D. (1978), tbi survivor (1985), and M.A. (1996).
Listing added: Nov 19, 2010)
Brain Injury Network Announces the Human Rights Issues and Concerns of People With Acquired Brain Injury From Traumatic Brain Injury (TBI), Brain Cancer, Brain Illness, Stroke, and Other Forms of ABI
People With Acquired Brain Injuries Consider Their Human Rights and Their Basic Human Safety Net to Be Their Most Vital Issues
SANTA ROSA, CA--(Marketwire - January 11, 2011) - The Brain Injury Network, an all acquired brain injury survivor organization (founded 1998), has announced human rights issues important to the ABI survivor community. BIN is a USA national and international organization promoting ABI survivor collective advocacy, citizen action and human rights. People with ABI at BIN have developed a collective consciousness and have articulated many issues that need public declaration. BIN is disseminating a consumer driven policy platform. We request that other policy advocates emphasize our recommendations and work for laws, standards and procedures that will protect vulnerable people who have ABI.
"The most important thing to us is our human rights, not our role as patients or research subjects. We wish to be perceived as human beings with the same rights and desires to live safely, with the protection of law, and with the same respect and dignity that other people have," said Susan C. Hultberg, President and Executive Director of the Brain Injury Network and brain injury survivor. "Our membership has stated repeatedly that our main concern is our basic human rights and the basic human safety net. This means basic shelter, food, and medical care. It is our position that the basic human safety net for a person with incapacitating cognitive and/or physical disabilities after brain injury is even more important than community reintegrative retraining programming." BIN is also concerned about safety, privacy, and confidentiality concerns for people with ABI, especially individuals with brain injury who participate on Internet social communities. Web administrators of social communities for individuals with brain injuries should set privacy defaults to maximum and not allow public archiving of participants' posts in search engines.
Additionally, medical, legal, government and other venues should use consistent definitions of ABI and TBI. Medical authorities should create a Post-Traumatic Brain Injury Syndrome (PTBIS) traumatic brain injury medical classification. PTBIS is an umbrella term being circulated by BIN to medical authorities in the hopes that they will utilize this new medical classification.
Other policy statements and guidelines of the Brain Injury Network may be viewed on its website at http://braininjurynetwork.org http://health.groups.yahoo.com/group/survivoracquiredbraininjury