It Takes All of Us: Advocacy for Brain Injury

By Marilyn Spivack, co-founder of National Head Injury Foundation

For some people, advocacy comes as a natural skill, but for many others, it takes learning, practice, and building confidence in how you present a particular message. There are many levels of advocacy – for oneself, for others, to create attention, or for a cause that leads to effecting change. It comes from a great need, it comes from listening and observing others, and it comes with the help of others.

I like many began as an anxious, loving, and terrified mother – a natural advocate for my daughter. I realized her needs were never going to be met unless I could create an organization that proved there was a great need for many people not only in Massachusetts but in every state.

March 15, 2023 is the 48th anniversary of my daughter Deborah Lee Price’s accident that left her with chronic disabling conditions since she was 15 years old. On a late Sunday afternoon in March 1975, we received a call at 8 p.m. telling us that Debby was close to death. I became her staunch and constant advocate. That Easter weekend in 1975, we didn’t really comprehend how we would be filled with terror, anxiety, disbelief and guilt that we let her go skiing, driving with someone I did not know, something I ordinarily would not have done and with that decision Deborah could die within minutes, days, or weeks. Her father, brother, sister, grandparents, and family shared those fearful emotions. She remained in a “deep” or a vegetative state, depending on who was giving us this information, for almost seven months.

Her Journey in 1975 was nothing like it would be if she was injured today. Today, she would be rushed through a system of care with options. But in 1975, we had the benefit of time and the benefit of the best neurotrauma expertise at one of the nation’s finest hospitals.

I became her advocate as soon as I asked for a phone and requested to speak to the chief of neurosurgery at Mass General Hospital to get her transferred as soon as possible from a small community hospital to the center of excellence at MGH. It took over 15 hours to transfer her from Gardner, MA to Boston. There was no helicopter services, no immediate neurotrauma care. The ER team kept her alive, and the general surgeon on site suggested that we let her pass as she would be a vegetable for the rest of her life and added that her healthy organs may be donated. It is now 48 years later, and I’m afraid to say that because of the disparities in care across geographic regions, families in remote and rural areas in this country may well be given that same suggestion.

It has taken decades of advocacy to get where we are to save so many lives after severe TBI. Head trauma caused by war in Iraq and Afghanistan brought attention to the desperate need to improve neurotrauma surgical techniques and care. All phases of rehabilitation care, from acute to subacute have made great strides through dedicated research advances in every phase that addresses neuropharmacology technology and the cognitive sciences. Neurotrauma research and advances that began in the late-70s stirred interest, and by the mid-80s, a focus on critical trauma care was made obvious at NIH and NINCDS. During that decade advocates spoke, and research into brain injury research was urged.

Under the umbrella of the National Head Injury Foundation (NHIF), which would become the Brain Injury Association of America, the NHIF’s advocacy efforts and messages grew rapidly among members of Congress and administrators of targeted federal agencies. The message was clearly driven and expanded by organized advocacy to Congress, and that advocacy was carefully drafted by committed professionals from many disciplines, clinical providers who were frustrated, and families that were devastated. There were few survivors that could speak and articulate the need.

In 1980, NHIF was at the right place at the right time. The need for organized advocacy was recognized and appreciated by many seeking change through research and appropriate rehabilitation services and special education adapted for pediatrics and adolescents.

Advocates heard us and their response was beyond our expectation. From across the country those concerned professionals and family leaders heard us asking to call, fax, and write to the National Institute of Handicapped Research (NIHR) and their senators and reps, and over 600 people did act! TBI rehabilitation was urged at NIHR which became the National Institute of Disability Research and Rehabilitation (NIDRR) and today is known as the National Institute of Disability Independent Living, Rehabilitation and Research (NIDILRR) which is within the Agency for Community Living (ACL).

Our advocacy was crafted to be educational and informational and was carefully drafted by committed professionals from many disciplines. They were providers, academic clinicians and researchers, recognized and published in their fields. They were true advocates.

In the 80s and 90s we did not have today’s technology. We used the telephone, US Post office and faxes. Meeting eye to eye, person to person, and building relationships made a difference. Appointments and meetings were planned by phone or letters, and often others would open doors for us. We introduced ourselves to members of Congress and their chiefs of staff, and at the same time, meetings were planned with federal agency administrators and their key staff.

Often if we thought it was necessary, we planned small dedicated seminars that would help those we were meeting with understand the issues and the need. We did this in Congress and throughout many of the agencies that needed to better understand the complexity of brain injuries and the road to rehab and recovery and that recovery can often be the creation of a new you.

I was asked to write this regarding the need for organized advocacy. Our road to achieve what is needed in the US still has a long way to go.

On behalf of all who have worked diligently, we ask you and invite you to take a role in expanding our advocacy efforts.

Reach out to BIAA and to all organized groups that focus on prevention, research, care, and services and for those who have suffered from a brain injury and the impact it has on their families.

We need more people to stand up to make a difference. It will take professionals and providers to move beyond their professional roles as advocates. It will take those affected and their families, friends, colleagues and employers. It will takes insurers. It will take state legislators and members of the US Congress, and it will take news outlets.

And it will certainly take you!

Your voice, your message, does make a difference. Thanks to all of you who have and to those who will!