The Brain Injury Survivor’s Guide to Brain Injury Awareness Day

Brain Injury Awareness Day is an event dedicated to anyone interested in brain injury. We gather on Capitol Hill, Washington, D.C., during Brain Injury Awareness Month each March to meet and discuss information about brain injury from across the United States. We learn from each other. To help new attendees get the most out of Brain Injury Awareness Day, the Advisory Council has put together some helpful tips based on their collective experience attending this event as brain injury survivors.

What to Expect During Brain Injury Awareness Day

Brain Injury Awareness Day on Capitol Hill is a crucial event for advocacy at the federal level. Attending this event is educational, empowering, validating, and rewarding; it could also be extremely challenging given the realities of living with brain injury. It can be an exhausting day for anyone. We have put together a few strategies that can make the day easier for you.

During Awareness Day there are sounds, lights, crowds, lines, and stress – a recipe for cognitive overstimulation. BIAA works hard to make this event as survivor-friendly as possible by advocating for a quiet room and other accommodations. However, logistics are incredibly difficult to arrange due to the volume of events on Capitol Hill, so nothing is guaranteed.

For those of us making the journey to Capitol Hill, here are a few tips on how we have made it through this event and managed our symptoms at the same time.

What to Pack

• Comfortable clothes! Yes, it is important to dress the part. However, know that it is a day of walking, standing, and being on your feet. Make sure you have a jacket or blazer in case the rooms are chilly, and bring comfortable footwear to change into if necessary. You’ll also want to prepare for a variety of weather conditions (Washington, D.C. in March can be snowy, rainy, or unseasonably warm).
• Write/print out extra copies of your personal schedule.
  • Include room numbers where applicable
  • Map out where the buildings are ahead of time. Learning the layout of Capitol Hill is not a last-minute cram session.
• Map of Capitol Hill
• Cellphone charger
• ID for security lines
• Empty water bottle to fill inside of the Capitol building, as you are not permitted to bring in food and drink
• Personal ways to share your story with representatives, such as photos or written statements. Be succinct since time is of the essence.
• Thank you cards to write on the trip home while the appointments are still fresh in your memory. They are key to building relationships and reminding the elected official or legislative aide of key points that you discussed in your meeting.

Tips for Representative Meetings

• Maintain a high level of respect: When advocating for brain injury, remember that each member of Congress may disagree with you. Do not feel discouraged. They are there to help us, any disrespect has the potential to burn bridges and prevent future progress.
• Legislative aides are assigned to certain aspects of the elected official’s job. Expect to get time with the aide, and then be thrilled to gain time with the actual congressperson.
• You do not have to be an expert to conduct meetings. Just talk about your experiences and what you know. This educates representatives and makes a difference. Your story matters and there is no need to be intimidated.
• BIAA creates packets of information called issue briefs to drop off with the Congressperson. These are talking points to start your advocacy conversation. You can pick up these packets at the BIAA table during the event or print them off on the BIAA site beforehand.
• It is critical to ask for accommodations if you need them. For example, delegation meetings are occasionally held in the hallways, but you can request to meet inside of an office space, so a seat can be made available.
• Consider opening each meeting by asking if the representative is personally connected to anyone living with a brain injury.

What to Say During Congressional Meetings

• Begin with a personal story explaining how you are connected to brain injury. Although this can be challenging for those of us who are long-winded, try to keep it relatively brief (2-3 minutes.) We recommend practicing ahead of time.
• Ask your representative if he or she has a personal connection with brain injury.
• Ask your representative if he or she is willing to join the Brain Injury Task Force
• Tell the person you’re meeting with what you need to live life better. Try to be specific and keep it short.

Additional Things to Keep in Mind

• Anticipate lines at building entrances.
• Restrooms and courtyards work as handy chill-out spaces on the go since they contain less noise.
• On the back of each business card you receive, write down the date and any personal notes to help remind yourself of that interaction. Be specific when making notes, the more detail in the moment will last a lifetime.
• Take breaks throughout the day.
• It is easy to get lost in these buildings, so stay aware of your time and surroundings.

Survivors’ voices are powerful, and they are necessary. However, we must prioritize our own health as best we can. If you feel you cannot attend the in-person event, there are many ways to advocate on this day and every day. Of course, we do not need to travel to Washington D.C. to have our voices heard. Social platforms are a great way to let your voice be heard. Calling and writing your representatives is also effective. The Advisory Council wishes you a safe and rewarding experience on National Brain Injury Awareness Day.