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Brain Injury Advocates, the book


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Back Cover


Book Back Cover

Susan C. Hultberg, MA and JD, recounts her own twenty-five year, posttraumatic brain injury (post-TBI) odyssey and her work as a brain injury survivor advocate. She also highlights certain endeavors of survivor advocates at the Brain Injury Network and elsewhere, and she chronicles the decades-long development of the acquired brain injury survivor human and civil rights movement.
Ms. Hultberg hopes to educate individuals with acquired (which includes traumatic) brain injuries and, additionally, other stakeholders, such as family caregivers, service providers, and government policy makers, about some key issues that confront individuals with acquired brain injury. She discusses wide-ranging topics including survivor community priorities, appropriate postacute living environments, and online social communities for people with brain injury. She tackles controversial topics, for example, she relates how inconsistent and outdated clinical diagnoses, terminology, and notions stigmatize, confuse and make life more difficult for people in the survivor community.

Ms. Hultberg sustained a rather forceful, life-transforming, moderate TBI in 1985. She is founder of the Brain Injury Network, an international and U.S. national nonprofit advocacy organization for individuals with ABI. It is operated by and for survivors of acquired brain injury.

We people with brain injuries have come together into a kind of collective consciousness because our issues are born out of a common experience. We all were born with one kind of brain and body, and that was changed by some acquired brain injury experience, such as a traumatic brain injury (TBI), stroke, brain illness, or brain tumor.

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.