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The Survivors' Point of View
We're on a voyage together. Let's make it count for something. Sue Hultberg, Founder
Articles List
Our View and Our Work
We are an association of individuals who have sustained acquired brain injuries. Our organization has been here over ten years. We discuss our views and we work to improve conditions for our survivor community. On this survivor produced website, we share our viewpoint with the world and we publish our public policy positions. We are representatives of the survivor (of) acquired brain injury community. We have organized to do good for our community. Our organization is entitled the Brain Injury Network.
At the Brain Injury Network, we espouse collective advocacy. We learn from each other. We share information. We network. We help each other. We advocate. We strive to influence potential legislation being proposed or enacted in our name. In order to do that we have developed and continue to develop public policy for our own survivor community.
Individually, we are also self advocates, but our true strength at the Brain Injury Network and in our Survivor (of) Acquired Brain Injury (SABI) groups is in working together to achieve improvements for our entire community. We have the desire to improve our world. In order for us to do that we must continue to learn. We must network even more. We must work together for our community to benefit. We must be firm in our resolve. This is very difficult for people who are disabled and/or sick. But some of us have some strength, expertise and talent and are trying.
We have been through an ordeal thrust upon us by quirk of fate. We have learned many lessons. We believe that the lessons we have learned are transforming into public policy concepts that will benefit our whole brain injury community. It is our intention to continue to voice our concerns and influence policy as it relates to us. We want society to understand our issues.
It is our hope that a better understanding of the survivor of acquired brain injury community will translate into better medical treatment for us. However, we are not just interested in brain injury advocacy about the medical side of things for us, but in advocacy that impacts all aspects of our lives. So we are also expressive regarding issues of day-to-day living, such as housing, accessibility, vocational training, work-place (and other) accommodations, education, transportation, in-home support, and security. We feel that certain voices in the medical community and legal community have done such a good job of taking over "advocacy" for us that many of our non-medically related issues have been placed on the back burner or ignored altogether. This situation must change. So, we are doing our part here to raise these other issues to the prominence that they deserve.
We are thankful to people who look deeply into our survivor produced brain injury (abi and tbi) website. We need staunch, hard-working, knowledgeable advocates from our own survivor of acquired brain injury community. We also need and appreciate advocates from the family caregiver, service provider and general community.
We invite survivors who wish to advocate in a concerted way to join us. We also invite survivors who are seeking an Internet support network to join us. If you are a survivor and wish to make survivor community friends and contacts, or you want to trade information, please investigate one of our forum boards (such as SABI).
Things will not improve for our community until we are more organized. We must educate the rest of the world as to our situation, our needs and what we see as solutions. It is our firm resolve that our ideas, as expounded via the Brain Injury Network, will result in legislation that will benefit our community.
Public Policy Definition
The fundamental policy on which laws rest. Used specifically as to policy that is not yet enunciated in the statutes (laws).
When it comes to public policy regarding "brain injury", it has always been defined by others for us. These others include advocacy agencies, service provider advocates, caregivers, and legislators. It is time for us to step up and communicate what public policy we survivors want and need. Our first effort is the "Call for National Standards". It may take years for our work in this area to come to the attention of decision makers, and for appropriate and necessary legislation to be enacted. So be it. It's worth the time and effort.
We have developed our public policy platform. To read it, please click here: PUBLIC POLICY.
The Survivor Acquired Brain Injury (SABI) Forum
We share our undiluted opinions on the SABI forum. SABI is a private forum open only to survivors. Survivors are welcome to join and express their personal views. SABI is the place where we formulate public policy positions that we hope will benefit our brain injury community. Please join us if you are a survivor with a viewpoint of your own. SABI
Quipping from the Boards
What is the point of this organization anyway, if most of us are too tired "to fight"? And what is "our fight"? I guess we are deciding. I know what this organization has been in the past. I know what it is right now. The future? Well, the future here is all yours.
If you like what you read on this site; just join one of our Internet groups (for example, SABI or Brain Injury Help, News, and Support Community). That is enough participation for some people and we are happy for that. It helps our brain injury community right there.
On the other hand, if you want to do more; there is more to do here, too. We need people with energy, knowledge and guts.
Yes, we are organizing. The few of us who care to limp along with it. In a nod to Benjamin Franklin, "We can all limp along together, or we will limp separately."
Thank you for reading.
Sincerely,
Sue Hultberg
