Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of the Brain Injury Network October 16, 2011
The Board of Directors of the Brain Injury Network approved this position of public policy:
Stigma, Marginalization and Stereotypical Thinking Regarding People with Acquired Brain Injuries
Introduction People with acquired brain injuries wish to be included in society. We do not wish to be marginalized, that is to say, relegated or confined to a lower social standing than the rest of society. Efforts to confine us to a junior role in our own affairs contribute to our marginalization and foster the stereotypical view that we are not capable of returning to productive lives. Indeed some of us are able to function independently after a certain point in time. However, whenever people in our community are not allowed meaningful participation in our own community’s affairs, we are stigmatized and marginalized, sometimes by those very people who have charged themselves with “advocating for people with brain injuries.”
Agencies Many agencies make it difficult and sometimes impossible for any people with brain injuries to participate in decision-making roles, especially at agencies’ most senior levels. Agencies should not make internal policy which overtly or covertly prevents all people with brain injuries from inclusion on their boards of directors. Organizations showing through policy or deed that they will not allow any brain injury survivors onto their governing bodies are not truly or properly representing brain injury survivors. In fact, the opposite is true. Said organizations are continuing, via their barriers to full participation by survivors, the incorrect presumption that no brain injury survivor is capable of participating at the senior levels of organizations. By extension they are reinforcing the misperception that many in society have that no person who has sustained a brain injury can ever fully participate in society again. This state of affairs is contributing to the stereotypical, prejudicial notion that all people with brain injuries are only good as clients and are always and evermore too incapacitated for leadership roles.
Marginalization from the Political Process People with brain injuries are by and large marginalized from the overarching political process unless they want to play along with the objectives and priorities of the medical community or other stakeholder. We find that when people with brain injuries are enlisted to help at most brain injury agencies it is generally to promote particular medical, research or business agendas or philosophies already developed by the service providers who operate the agencies. We find that most governmental and other agencies do not spend time finding out what our survivor priorities actually are. They also do not devote resources to promoting survivor-driven agendas.
Opportunities for Inclusion in the Decision-Making Process All policy-making stakeholders that serve the brain injury survivor community should provide opportunities for the inclusion of the survivor perspective in their decision-making process. Agencies and organizations can establish that they are inclusive in several ways. They can and should seek out survivor input and feedback utilizing various modalities. They can operate brain injury survivor councils. The focus of said councils should be to help make policy. It is insufficient if the mandate of a council is to enlist survivors to share their stories for the benefit of predetermined (by third-party stakeholders) agency agendas. Agencies can also have among their paid employees individuals who have sustained brain injuries. They can also include directors who have had brain injuries on their boards of directors. There are many bright and restored-to-function individuals in the brain injury survivor community who can be enlisted in these and other leadership roles and activities.