Advocacy by and for People with ABI (Acquired Brain Injury)
Public Policy of the Brain Injury Network Policy dated 12-9-12
The Brain Injury Third Party Stakeholder Advocate's Duties to be Politically Correct, Politically Sensitive, and to Accurately Report Our Community’s Priorities, Concerns, and Issues:
Governments, agencies, organizations, or individuals who claim to speak for our community in any capacity must be tactful when they discuss or refer to us. They should be careful not to use offensive language about us. They should be affirmative, understanding, and even encouraging in the promotion of any brain injury survivor terminology our community uses to identity itself. The main example of this is the term survivor. Many of us identify with this term, and it is not for the service provider community (associations, doctors, psychologists, etc.) to criticize, discount, discredit, or downplay our use of that term. Using the term survivor is not a medical determination. It is a human being determination. It’s also a matter of personal choice as to whether not an individual with a brain injury wants to call him or herself a survivor or some other term for that matter.
Additionally, all third party advocates and additional providers should be politically sensitive to our extensive concerns. We have noted over the years that our social welfare rights (e. g., basic human rights, concerns about safety, housing, food, medical care, privacy, freedom of choice) are often discounted or ignored by trusted (elected) policy makers or self-anointed advocates. There is much more to our reality than our medical, products, or service needs. It is true that we require all of the help we can get from society and particular providers, especially those who take it upon themselves to speak for us. We would like them to speak accurately, respectfully, tactfully, and always with our bests interests in mind. Additionally, we would like all third-party spokespeople for us to be accurate in what they report to be our community priorities and concerns.
The problem has been one of focus. Third parties, if they are not family caregivers, are often goods or services providers. These are the brain injury system stakeholders in society who care for, counsel, educate, medicate, research, treat, or sell goods to people with brain injuries. Medical or other professional service providers tend to see us as patients, research subjects, and clients. Manufacturers or merchants see us as buyers, shoppers, or users. These third-party stakeholders generally make their emphasis on our behalf their own products or service delivery modalities. They do not usually see political correctness as an important part of the duty to us, if they even feel they have any duty toward us. We brain injury survivors, on the other hand, focus on ourselves as being people with many objectives, interests, and needs. Our concerns go past any particular service or product. We are consumers of goods and services, but we are not just about goods and services. Providers of goods or services ought to make an effort to understand and be supportive if and when brain injury survivors have greater objectives than just some particular goods or services agenda.
Political correctness and the promotion of the entire slate of survivor priorities are important to us, and it ought to be to third-party stakeholders, also. Additionally, if these third-party stakeholders are going to be advocates in our name, they also have a further duty to accurately report what we in the survivor community state are our priorities and concerns, not just their own self-serving agendas.
In conclusion, entities and individuals who advocate on our behalf and/or who offer goods and services to people with brain injuries should make an effort to be politically correct and politically sensitive in how they interact with and report on brain injury survivors. They should be tactful in their language about us. They should respect our chosen self-identifying terms. When they hold themselves out as advocates for us, they have a duty to accurately report our community’s issues and policy concerns.