Who is Representing Individuals with Brain Injuries?
Who represents our survivor community? Who really represents brain injury survivors? There are many entities and agencies which purport to represent us, to advocate for us, to speak for us, and to be a voice for us. It is very easy for anyone or any agency to say that it represents us. But what would be the true measure that we are being properly represented by any agencies or institutions? Would it not be that our issues, all of them, are being championed by the "representative" entity? Would it not be that our brain injury survivor interest is being placed ahead of all other interests? Would it not be that our input is sought and our counsel is found at the most senior levels of the agency?
Would it not be that no business interest controls the policy formulated by the agency? Would it not be that no business interest is sought out to pay the salaries of the key personnel of the agency? How can staffers speak for us when they are paid by business interests that have their own agenda? Yes, the agenda might be helpful in many ways to the survivor community, but it will not be identical to the survivor agenda. If the salaries of key staff are paid by business interests, would it not be reasonable to assume that their loyalty will actually be to the business interests paying their salaries as opposed to the brain injury survivor community?
Another factor to look at in the assessment of whether or not an institution, agency, or business has properly spoken for the survivor community is to look at the long track record, if any, of representation. Has the agency championed our issues over a long period of time? Has it sought out the input of the survivor community? Does that agency have a formalized modality for interacting with the brain injury community, for example, a brain injury survivor council, or is its main interaction with the brain injury survivor community to steer us to affiliated service providers or to ask us to donate to the organization? Has it made any promises it has actually delivered upon? Has it made promises that it has never delivered on? Has it sought more from the survivor community than monetary support and "story sharing?"
Has the agency or institution that says it speaks for us protected our privacy, gone on the offensive about bad business practices that harm us, or spoken out about the need for a basic human safety net for us? Or, has it mostly endeavored to protect and promote business interests and professional interests?
These are just a few of the things that should be thought of if one is contemplating whether or not an entity purporting to represent we people with brain injuries actually conducts business the way we would like to see it done.
There is at least one agency that actually does communicate peer-to-peer with the brain injury community. There is one that is bringing forth the many issues that we survivors deal with every day of the year. The agency will take on controversial issues and will go head-to-head with interests that are doing things that can bring us harm. Yes, that agency is this one, the Brain Injury Network, an all-survivor brain injury international organization particularly interested in advocacy issues and public policy for our community. We don't have to be careful not to offend business interests. We don't ignore issues that might put some perhaps costly regulations on service providers. Of course, providers don't really want to promote regulations or oversight. We survivor advocates at the Brain Injury Network, on the other hand, think that sometimes regulations, laws, standards, and protocols are a very good way to optimize programming for us, the survivor community. And rules and regulations are a good way to help ensure that we are not harmed.
We would like agencies that purport to represent us to actually do that. Fight for us. Don't just be a repository for service providers and business interests. Fight for us even if it may be uncomfortable for some key players who don't want the bother of protocols and regulations. We like laws, protocols, regulations, rules, and program oversight. They help ensure our safety. They help improve our rehabilitation, our outcomes, and our lives. That is what we would like to see out of people, or agencies, or institutions that say that they "represent the survivors."