Hello and welcome back to Second Chance to Live my friend. I am happy to have you around my table. Thank you. On January 19, 2016, Dr. Martin Luther King Day; I wrote and published the article, Equality, Inclusion and Brain Injury Recovery. The lack of inclusion of individuals living with brain injuries by professionals in the brain injury industry promotes and perpetuates dependence upon them, instead of independence from them. In the article I spoke about the disparity of equality and inclusion of brain injury survivors by professionals. Professionals working with in the “industry” of brain injury recovery. In May 2013 I was asked to conduct a workshop at a brain injury conference in Seattle, Washington.
During my attendance at the conference I had several enlightening conversations. One of these conversations revealed that brain injury conferences are set up to have a day for brain injury survivors and a day for professionals. The events of the days are separated. Another conversation revealed that to be on the board of the brain injury association one needed to donate $20,000 to the association. As I reflected on these conversations some concerns came to mind. What was behind brain injury conferences and brain injury associations? Dependence or Independence?
What was behind brain injury conferences and brain injury associations? Dependence or Independence?
As I thought about the distinction – a day or so for survivors and a day or so for professionals – I wondered why the brain injury conference did not join survivors with professionals. The second conversation raised concerns. Why was there a large amount of money required to be a member of the board of a brain injury association. As I thought about both conversations the matter of inclusion and exclusion became apparent to me. I wondered if it was true that brain injury conferences and brain injury associations were more about making money than helping brain injury survivors?
In March 2015 I was invited to attend the North American Brain Injury Society Conference in San Antonio, Texas. I was very fortunate to have had my plane ticket, hotel, food and a $650 conference fee paid for, so that I could attend the conference. The man who brought me to and paid for my attending the conference told me that I would be able to see how the brain injury industry worked. The experience was indeed eye-opening to me. During my attendance at the conference I noticed some thing that puzzled me. There were not many brain injury survivors in attendance. Actually, I only met one other brain injury survivor and she accompanied one of the providers. The provider told me that the survivor inspired her to do her Ph.D work.
During my time at the conference I met many MD.’s, Ph.D’s, JD’s and a host of brain injury industry providers. After arriving home from the conference, I reflected upon the absence of brain injury survivors. Plenty of professional and providers, but the absence of survivors. What became apparent to me was the absence of brain injury survivors. A lack of inclusion or a voice by brain injury survivors during the conference. What this led me to believe was that brain injury survivors had not been included in the planning of the conference or the conference program. The absence of brain injury survivor’s did not make sense to me. Why would brain injury survivors not be included in the planning or program, as the brain injury conference was about people living with brain injuries.
The absence did not make sense to me, as who could speak with more credibility than people living with brain injuries. I am not quite sure what the motivation of planners were in not including people living with brain injuries at the conference? It may have been that the exorbitant cost of attending the conference. It may have been that the planners and the conference committee did not consider viable the contribution of people living with brain injuries. That brain injury survivors do not have anything worthwhile to contribute. I am not sure why people living with brain injuries are subsequently led to believe that their voice (s) do not count? I am not sure why professional working in the brain injury industry say that we are the experts, but do not seek to not listen and include us in the discussion.
“Whatever the motivation for not including brain injury survivors in the planning, participation and presentation at the conference, the end result was disenfranchisement. Disenfranchisement from the process and the discussion to provide excellent service provision for brain injury survivors. A disenfranchisement of those working with in the brain injury industry. MD.’s, Ph. D.’s, JD’s and service providers. Professionals who could benefit from the voices of individuals living with brain injuries. A disenfranchisement from having a voice that needs to be heard.
A disenfranchisement due to a lack of interest to include the voice of brain injury survivors at professional conferences. A disenfranchisement for not including brain injury survivors to present in the program format of professional brain injury conferences. As a result of the lack of inclusion at these professional brain injury conferences brain injury survivors feel exploited. Like cattle to be bought and sold on the open market, having no choice or say so in the matter.
A disenfranchisement that results in a system that seems to promote ongoing dependencies. Dependencies that slowly drain financial resources. Dependencies on a prescribed agendas. Dependencies upon providers through MD’s, Ph. D’s, JD.’s, other professionals and services. Dependencies upon symptom treatment. Dependencies upon drug regimen’s and treatment modalities. Dependencies upon programs, that do not produce long-term solutions. Dependencies upon paying fees to receive services. Dependencies upon compliance to continue to receive services.
Dependencies that do not encourage and empower lasting hope.
Recently, I was speaking with a friend. He made a profound statement, “There is no money in independence”. As I thought about his statement I realized there is also no money in encouraging self-efficacy or self-advocacy. But then I realized, there was a better way.
Something to Consider
Consequently, as I spoke about in my article, Equality, Inclusion and Brain Injury Recovery; for many years African-American individuals were told to sit at the back of the bus. African-American individuals were led to believe that they were inferior. Such behavior continued until one day a woman by the name of Rosa Parks said no more. She took a bold move and sat in the front of the bus. What she decided to do changed things forever. In my estimation, brain injury survivors have been told to sit in the back of the bus for too long. By being told to sit in the back of the bus survivors voices have been ignored.
Like Rosa Park’s action to move to the front of the bus was heard, brain injury survivors need to take their seat at the front of the bus. The brain injury industry say’s that we are the experts, but in practice minimize, marginalize, dismiss and discount our voice. The brain injury industry says that “it is about us, with us”, but in reality the brain injury industry makes, “it about us, without us”. To professionals reading this article and for conference committees, “make it about us, with us”. Include our “voice” in your planning and at your upcoming conferences.
Brain injury survivors are being told that “it is about us, with us”, but in reality the brain injury industry makes, “it about us, without us”. To professionals reading this article, “make it about us, with us”. Let us, together; encourage self-efficacy and self-advocacy
We have the Power to Encourage Long Term Solutions
Involve brain injury survivors in the planning and preparation of your brain injury professional conferences. Have brain injury survivors present and lead workshops at your professional brain injury conferences. Because many individuals who are living with brain injuries are living on fixed incomes, pay for their expenses to attend your conferences. Involve brain injury survivors in your service provision. Invest in individuals living with brain injuries, instead of only using brain injury survivors to promote your agenda(s) and pad your bottom line (s). We are worth your investment, as we pay your salaries.
Invest in the lives of brain injury survivors, beyond your programs. Give brain injury survivors the dignity and respect that you want from us. We are more than a paycheck to you. Make it about us, with us” by including our voice (s) at your conferences. No longer keep us at the back of the bus. Invite us to sit in the front of the bus. Invite us to join the conversation. Embrace our value, significance and what we can bring to the discussion. What WE can accomplish, as you seek to succeed; through your practice (s) and service provision (s).
Together We Can Encourage and Empower Lasting Hope”
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