Let us explain what "by and for" or "for and by" the brain injury survivors means. It means that the agency and/or web site is operated by the brain injury survivor community. It does not mean that it is operated by any outside service providers with the cooperation and input of brain injury survivors. It means that the entity (for example, the Brain Injury Network) is completely in the control of a brain injury survivor community without service provider oversight or intrusion.
It does not mean that a rehabilitation (Rehab) company or companies, a government, a learning corporation, a brain injury association and/or an international mega healthcare products company (Covidien) are backing the enterprise. That would and does call in to doubt that the agency or web site purporting to be "for and by the survivors" actually is that. If a service provider or collaboration of service providers and a for-profit supply company launch and back a "for and by survivors" web site or entity (originally with our exact legal name to boot), it is not a "for and by" brain injury survivors enterprise.
When we say that we are "by and for" and we also say "for and by" in some of our material, we have something specific in mind. We do not appreciate opportunistic service provider entities copying our words on that, because the intent that they have is quite different from the intent that we have. "By and for survivors" means something very specific to us. It means that what we are doing is independent of third-party service provider business interests. We have a purpose and an agenda that must remain independent of these business concerns. When providers utilize our words for their own business purposes it comes off very shallow, intrusive and opportunistic indeed.
Similar arguments can be made regarding sites that purport to offer up "brain injury survivor self-advocacy." If the web site merely refers to a list of PhD people who clearly are service providers, not survivors, this is not what we could consider to be a brain injury survivor advocacy web site. It might be construed to be some sort of advocacy site, but certainly not one that is operated by brain injury survivor advocates.