Advocacy by and for People with ABI (Acquired Brain Injury)
This commentary appeared in the Brain Injury Network Brainwaves. Issue 14. Spring 2002.
For those who donít know what the Brain Injury Network, is, we are the original survivor of brain injury organizationÖ.We were started by and for survivors of brain injury. We have been here a lot of years now. We struggle to run our organization the right way, the legal way, the safe way.It is a struggle to do it the correct way, because it costs money to do it the correct way, but that is the only way. Now, there may be some other agencies, organizations, or institutions that say they are now running survivor based programs. They may even have the correct zeal and survivor drive involved. However, if they are not operating what they do with great attention to safety, supervision by trained staff, financial safeguards, governing board or other senior oversight, they are not doing justice to the brain injury community.Good intentions are not enough. We must never put anyone in harmís way.
I have sometimes mused that I am one of the strongest of the weak, and I am also one of the weakest of the strong. So, I see only one way to do things. That is to make sure that everyone is protected. Some people donít like rules, protocols, or by-laws. These things are all here to protect and guide, not to restrain and suppress. With regard to this organization, the only thing that holds us back is the lack of adequate funding. There are more things we could do with adequate funding. We could do some of these things without protections, such as insurance, things that cost money. But, we wonít. Because, we are only going to operate with safeguards. Now if other organizations choose to operate differently, this is their business. Although it is sad, and we canít approve, because people who may need to be protected are misled or completely unaware that they may be in harmís way. We will not do that. If you are used to that kind of organization elsewhere, donít come to us expecting that we will be like that also. For we are guided by rules. And we will not put anyone in harmís way just to save on the hassle of organizational structure and cost, work, fundraising, or asking for dues. We need those dues to pay our costs, and we pay those costs, which include insurance, to protect our members, our volunteers, our staff and our organization. There is no discussion on that. (We have always operated like that, and it never was an issue in our group. It only has become an issue, because people in other groups, who have never paid insurance, and by the way, have never enjoyed the protection of insurance, have been raising this as an issue now. Lucky for them, apparently nothing truly awful has ever happened in their organization, at least yet, that would require insurance, and safety and financial protocols to have been in place.)
People with brain injuries are no different from anyone else when it comes to a need to operate within the law. Our organization strives to do everything in the most legal, fiscally responsible, ethical, safe way. And we are always going to do things that way. We need to protect each other and our organization by always applying the highest standards, and we do. It is sad if this is not what is happening elsewhere, but we have no control over other organizations. There are rules of acceptable conduct and laws that are here to protect and govern us all. We only hope that all other agencies that are in the business of serving people with brain injuries are following these laws. We look into these laws and follow these laws. And we strive to utilize what is called best practice.
I watched an action movie the other day. In it the protagonist said, ďOne thing about having been to hell and back, you learn how to stand alone.Ē I thought, wow, that is exactly how I feel sometimes; Iím going to write that down. I didnít know I would share that with you readers, but I bet a lot of you feel that way sometimes. One isnít alone all the while, of course, and it sure is nice to have other survivors of brain injury to interact with. It is nice to be in the company of others who have endured like that, and who can stand their ground, even in the face of physical and other kinds of challenges. Sometimes I wonder how people who have not been through it can possibly think that they understand it. But there is value in their unwounded sensibilities and sympathies, I guess. However, I have no respect for do-gooders, no matter how kind or well-meaning, if they are not operating with the greatest attention to safety.
As for myself, I am not a do-gooder; I am not always up to the task of being a kind, sympathetic person. Sometimes, I am downright crabby and irritable. A brain injury can do that to you. Well at least so far I can remember to carry on this group in a legal, organized, safe way. I would rather be crabby and safe than sweet and sorry.
I do sincerely hope that eventually some others will pick up the mantel when it becomes evident that I can no longer do justice to our movement. But, it must be people who respect our charter and our rules and who are willing to make the necessary sacrifices to see to it that we operate in a way that protects everyone.
Postscript (2009). We no longer charge mandatory dues. We merely ask people to join One Cause and Escrip for the organization. (If you wish to enroll in escrip for BIN, please use group ID 139609222.)