Yesterday was Dr. Martin Luther King Jr. Day. A day to celebrate the life of a man who brought about change. Change that echoed the decision of Rosa Parks to no longer sit in the back of the bus. The back of the bus that practically and metaphorically represents a dis empowering of the individual.
Rosa Parks decision to be heard came with a price, however her “declaration” made a profound statement. Rosa, like the work of Martin Luther King Jr. echoed the sentiments of many demanding equal rights. The ability to be heard and included.
Since his death, on April 4, 1968 in Memphis, Tennessee; Dr. King’s message of equality and inclusion continues to be shouted from the “house tops”. Continues to be stated and made clear through the ripples of his message.
My Experience
In April of 2013 I was asked to conduct a workshop at the Embracing Life and Living Well after Brain Injury Conference in Seattle, Washington. During my stay at the conference I heard one of the organizers say that the Brain Injury Conference for survivors was separate from the portion of the Brain Injury Conference for the professional community. The professional community serving the brain injury community.
In October 2013 I was asked to give a keynote presentation at the 2013 Southwest Conference on Disability in Albuquerque, New Mexico. During my keynote presentation I stated that the professional community could benefit from what we, who are living with brain injuries; have learned navigating life with brain injuries. Working together, we could create and bring about an enriched program of recovery for individuals living with brain injuries and invisible disabilities. A program of recovery based on what has worked for us. A program of recovery that would breed hope.
In March of 2014 I wrote an article, Beyond Brain Injury Awareness Month — Why Are Brain Injury Survivors Told to Sit in the Back of the Bus?. In this article I asked, “Why are brain injury survivors, in practice; are being told to sit at the back of he bus”. I also asked, “Why are brain injury survivors not being brought to the “table” to provide practical input?”. In Beyond Brain Injury Awareness Month — Why Are Brain Injury Survivors Told to Sit in the Back of the Bus? I went on to ask 5 additional questions.
Questions
Can some one in the professional community — trusted to empower and give hope to brain injury survivors – please tell me?
“Why, in practice; Are Brain Injury Survivors being told to Sit In the Back Of the Bus?”
Can some one in the professional community please tell me.
“Why are beacons of hope and agents of empowerment dismissed, discounted, discredited, minimized and marginalized by the professional community?”
Can anyone in the professional community please tell me.
“Why the “brain injury industry” seeks to divide and separate us from individuals working with in the professional community?”
Can anyone in the professional community please tell me.
“Why are why are brain injury survivors told that we are the “experts”, yet not listened to, valued or heard?”
Can some one in the professional community please tell me.
“Why are professionals in the “brain injury industry” communicating — by their behavior — to brain injury survivors that our “voice” does not matter?”
Since writing, Beyond Brain Injury Awareness Month — Why Are Brain Injury Survivors Told to Sit in the Back of the Bus? I have yet to gain a response from anyone with in the professional community.
Call to Action
In November 2014 I wrote an article, Why are Brain Injury Professionals Not Listening to Brain Injury Survivors?
In that article, I shared several points. It is hard to exactly know why my attempts to enhance brain injury recovery have been, in effect; trivialized by the “professional community”. What I can’t understand. Why professionals with in the “brain injury industry” in effect minimize, marginalize, dismiss and discount what people like myself bring to the “table” to enhance brain injury recovery.
Per my experience, approaching Second Chance to Live’s 9th year anniversary, I have also had a similar experiences. Being ignored when ever I have freely sought to be of service to both brain injury associations and brain injury alliances in all 50 states. I have also found my efforts to provide encouragement, empowerment and hope disregarded by organizations, rehabilitation centers, providers of brain injury services and support groups with in those systems.
I am not sure why this is the case, as what I am offering is without charge or cost to them through Second Chance to Live and my 7 eBooks.
This does not make sense to me, as what I offer through my websites and eBooks is tested and proven.
In April of 2015 I was invited to attend the 12th Annual NABIS Conference on Brain Injury by Mr. David Seaton. Thank you Mr. Seaton for the opportunity to attend the conference. The experience and the opportunity was an honor for me. In follow-up to the conference I wrote this article, Second Chance to Live and the North American Brain Injury Society 2015 Conference on Brain Injury.
In the article I shared:
“As an individual living with the impact of a traumatic brain injury and an invisible disability I noticed some thing as I listened to the speakers and interacted with individuals attending the conference. There were not many brain injury survivors in attendance at the conference. Actually, I only met one. Patty Foster. Patty Foster, who attended the conference with Deana Adams PH.D, LPC-S. The absence of other brain injury survivors puzzled me.”
What mystified me was, why there were not more brain injury survivors included in the 12th Annual North American Brain Injury Society Conference. What mystified me was, why brain injury survivors were not included to be an integral part of the conference. What mystified me was that the conference committee clearly was not interested in the benefit that brain injury survivors could offer to the Ph.D’s, MD’s, JD.”s and other providers attending the conference.
As I thought about the lack of inclusion of brain injury survivors at the conference, several realities dawned on me. Those individuals planning and those attending the conference intentionally excluded brain injury survivors. By realizing this disparity, what became apparent was that those who planned the conference and those attending clearly do not see brain injury survivors with equality. What also became apparent, by intentionally excluding brain injury survivors from the conference; the “brain injury industry” had little respect for brain injury survivors.
I am not sure why there is a lack of respect and a lack of inclusion by the “brain injury industry”? Can anyone that is part of the “brain injury industry” tell me?
What mystified me, was the lack of equal representation of survivors to enhance brain injury recovery for “professionals” attending the conference. There was no apparent interest in having brain injury survivors share what helped them to overcome obstacles. What mystified me was that the North American Brain Injury Society Conference could have enhanced brain injury recovery by including brain injury survivors.
Epilogue
What did not make sense at the time, has since become apparent. I will use a metaphor to illustrate.
As when families and guests get together for parties and holiday meals, children are often made to sit at the kids table. To sit at the adult table with the adult’s, becomes a right of passage. Being a brain injury survivor can be likened to being made to sit at the kid’s table. Being a professional can be likened to siting at the adult or grown up table. But, unlike with children who eventually have the right of passage to sit at the grown up table; brain injury survivors have no right of passage.
Brain injury survivors are subsequently led to believe that they do not deserve to be, sit or be a part of the discussion at the grown up table. Brain injury survivors are subsequently led to believe that they do not have right to be listened to or valued. Such a message conveys a huge injustice.
For those professionals – who are a part of the “brain injury industry” reading this article, such messages are very disconcerting. Such messages convey an inability of brain injury survivors to contribute to one’s life apart from professional intervention. Such a message creates dependencies, limits and undermines hope.
But, I have a solution
Why not have more brain injury survivors attend brain injury conferences held by professionals. In my estimation, having brain injury survivors attend and be among the speakers / presenters at these conferences would greatly enhance the learning experience of professionals in attendance.
Invite and provide the financial ability for individuals living with brain injuries to attend your conferences. Give us the dignity to sit at the “grown up” table and be a part of the brain injury recovery discussion.
Let’s work together. Include brain injury survivors to improve the quality of life for individuals living with the impact of a traumatic or other brain injuries. Invite us to come to the front of the bus, to be a part of the discussion. Invite people living with brain injuries to your conferences and let us share what has worked for us. What has worked for us, as individuals living with brain injuries. What has worked for us, to empower our ability to overcome many obstacles.
You say that you want to help improve the lives of brain injury survivors. With all due respect, to that I would say; “Put your money where your mouth is to enhance the brain injury recovery process”.
Please No More Rhetoric
Let us create win/win outcomes together.
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