Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of Brain Injury Network 06-12-2010
The Board of Directors of the Brain Injury Network approved these positions of public policy:
1. Strokes are Not TBIs A stroke is not a form of traumatic brain injury. A stroke is a form of acquired brain injury. A very simplified explanation is that the word "traumatic" in TBI refers to the causation of the brain injury. TBIs are caused by external forces. Strokes are not caused by external forces. Strokes are caused by issues in the brain. Therefore, strokes are a form of ABI, but they are not a form of TBI. Ask your medical authority for an explanation.
2. The Subclassification Hierarchy of Acquired Brain Injury (ABI) Acquired brain injuries include injury from traumatic brain injury (tbi), stroke, brain tumor, brain illness, anoxic/hypoxic injury, etc. ABI’s should not be divided into two-sub categories, traumatic and non-traumatic.Please remove the traumatic and non-traumatic emphasis from the acquired brain injury hierarchy. It is better to state that ABIs include (the co-equal) brain injuries from stroke, tumor, illness, poisoning, trauma, etc.
Please think about the logic problems we all learned in grade school. For example, in the barnyard there are many types of animals such as horses, cows, and chickens. Animals in the barnyard are not divided into two subclassifications, horses and non-horses. Nor are they divided into two categories, cows and non-cows. Horses, cows, and chickens are each equal in importance in the “barnyard animal” sub hierarchy.
Similarly, acquired brain injuries should not be divided into two categories, traumatic and non-traumatic.It does not seem logical that the determinative factor in the classification system should be whether or not an abi was a tbi.Nor should it be whether or not it initiated from a stroke, a brain tumor, a brain illness, etc. Each of these scenarios is a co-equal causation. Why should any one causation be elevated above the others in the hierarchy?All of the causations should have equal footing in the hierarchy.
3.Profiting from Exposing Brain Injury Survivors’ Identities We understand that there are times when particular case scenarios of people with brain injuries will be discussed in medical journal articles, lectures, books, etc. However, we object strongly to professionals identifying particular survivors by name or by other identifying private information in journals, lectures and books. If it is possible to ascertain who exactly the research subject was, the professional has gone too far. In the old days, the actual identity of research subjects was guarded by the professionals. For example, the identity of the famous neurological patient “H. M.” was guarded expertly by his doctors for over 50 years until after his death. This is the right way for medical professionals and researchers to go about things.
There is now a very disturbing trend where certain professionals are publishing too much information about their research subjects in articles and books. It is enough that in the interest of science we find out the most intimate details about these folks. No one should know who these people actually are. There is no excuse for any professional to share such detailed identifying information. It is a breach of their duty as professionals to protect the best interests of their study subjects who have brain injuries. It is too easy to take advantage of some people with brain injuries, and get them to sign disclosure consent forms. Don’t expose these folks. Protect our dignity. Guard our privacy.