Advocacy by and for People with ABI (Acquired Brain Injury)
Brain Injury Survivors, TBI Survivors, ABI Survivors, and Other Identifiers
Basics:
1. We are people.
2. We are not victims.
3. We are not our medical condition.
4. "We are tbi" or "Wearetbi"? No. "Wearestroke"? No. "Wearebraintumor"? "Weareaneurysm"? No. "Weareacquiredbraininjury"? No. We are not TBI. We are not stroke. We are not brain tumor. We are not brain aneurysm. We are not acquired brain injury.
5. We are people who have sustained some kind of brain injury. When others are speaking about us we do not wish them to define us in terms of any medical condition. We are not our medical condition. We prefer to be defined as who we are - people. If we are defined as anybody it ought to be as people. People first and condition second. (We didn't invent that idea. The "people first" philosophy for people with disabilities has been around a long time, and it works for us.) "We are people or individuals with this or that medical condition!" works. That is the proper way to define us, as people, not as some medical condition.
6. Our friends and family are our supporters, caregivers, etc. They have survived something, but they have not personally survived their own brain injury.
7. It confuses the situation when caregivers, even spouses, take on the mantel of being "survivors", because this is our designation for ourselves.
Terminology:
It is common terminology to say that we are brain injury survivors and/or that we are acquired brain injury survivors. Some of us are also traumatic brain injury survivors. And head trauma survivors. Some others among us might be stroke survivors, brain tumor survivors, brain illness survivors, anoxic injury survivors, etc., etc. One thing one could say about all of this terminology is that it is putting our disability issue (brain injury) ahead of us, as people. But these terms are in universal use, and we will answer to them. However, in this organization, we prefer the identifier, "survivor of acquired brain injury" (SABI), because it is putting the person first and the condition and/or disability second. Please see more under "SABI".
Since we are almost universally referred to as brain injury survivors, or phrases along those lines, here are a few words about that. When these terms are used to reference us, the label "brain injury" is coming ahead of the person. Another example would be the label "brain injury victim". We don't care for the term "victim". Unfortunately, one can also still read or hear "brain damaged people". This term should not be used to identify or label us. Other unflattering terms that should be avoided by the politically correct include "head cases", "grass cutters", and "idiots". When service providers or the general public use these derogatory terms they are being insensitive to us, or worse. Please do not use these terms. These terms are demeaning. Use neutral terms that do not carry negative connotations.
Please consider that we are persons who happen to have had an acquired brain injury of some kind. Moreover, we are survivors of acquired brain injury. Hence, if we have to be identified in some way, and sometimes we do, we are collectively survivors of acquired brain injury (SABI). But some people don't like that either. They wish to be known as winners or thrivers, or whatever. To each his own. But here at the Brain Injury Network, we are using the identifier "SABI" (survivor of acquired brain injury), because we have to use some term, and SABI about says it all. We lived through something. We endured. We survived. It's not a label. It's a fact. It's also a badge of honor to have survived. And we move on from there. But we're forever survivors of acquired brain injury. That's a feat. That's what we have in common that brings us together.
