Brain Injury Survivor’s Guide to Brain Injury Awareness Day

By the Brain Injury Association of America’s Brain Injury Advisory Council

The Brain Injury Advisory Council (BIAC) is a diverse community of brain injury survivors who have moved beyond the initial stages of recovery. We support one another as survivors and as volunteer advocates. The BIAC represents the survivor perspective to the Brain Injury Association of America (BIAA) and other brain injury stakeholders.

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 BIAC has put together these tips. This guide is based upon 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, and the BIAC wants you to be prepared. 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.

1. Awareness Fair: Different organizations (nonprofits, researchers, health care centers, etc.) set up booths to advertise for their cause. Expect a lot of free swag such as stress balls shaped like brains. This event is held in the main foyer of the Rayburn hall, which is known to be very loud.
2. Congressional Briefing: Often considered the highlight of the day, the briefing is a panel of leading experts and survivors who share the latest news and findings about brain injury. Past panels have included members of the Centers for Disease Control and Prevention and the National Football League. The Congressional Panel is a very well attended event and may not provide enough seats for attendees. It is recommended to arrive at least 30 minutes before this scheduled event.
3. Meetings with Representatives: Schedule a personal meeting with your representative to discuss legislative measures surrounding brain injury. Read below to see how to schedule these meetings and tips on what to say.
4. Reception: BIAA serves light refreshments and survivors gather to meet and share their stories. The sponsors, Rep. Bill Pascrell and Rep. Don Bacon, give inspirational speeches on why they choose to support brain injury legislature.

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.
• 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 (e.g., Rayburn 204)
  • Map out where the buildings are ahead of time. Learning the layout of Capitol Hill is not a last-minute cram session.
  • Be ready for last minute adjustments to plans.
  • Plan for personal lunch time, which may be early or late depending upon your schedule. An easy option is the Rayburn Cafeteria located in B357. Consider stocking up on snacks here.
  • Map of Capitol Hill
• Cellphone charger 
• ID for security lines
• Empty water bottle to fill inside of the building, as you are not permitted to bring in food and drink
• Personal ways to share your story to 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

• Set up meetings at least a month in advance.
• When you set up meetings, always write down the name of the person you spoke to, along with dates and times of the meeting.
• 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.
• 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.
• 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.
• Remember to invite representatives to the reception.

Additional Things to Keep in Mind

• Anticipate lines at building entrances. The Rayburn Building lines can begin as early as 8:30 a.m., so be sure to arrive early.
• 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.
• At the awareness fair, exhibitors are there to learn from you just as much as they are there to educate you on their good or service.
• Take breaks throughout the day.
• It is easy to get lost in these buildings, so stay aware of your time and surroundings.

How to Request a Meeting with Your Representative

1. Identify your Representatives and Senators: House of Representatives and United States Senate
2. Dial the Capitol Operator at 202-225-3121 and request the number of your representative, or request to be transferred directly. Alternatively, visit your representative’s website from step 1.
3. Once connected with the office, request to speak with the scheduler. If your representative is not available that day, let the scheduler know that you would like the opportunity to speak with the Chief of Staff, Legislative Director, or Legislative Assistant assigned to health care issues.
4. You should request these appointments as soon as possible. However, understand that your representative is very busy and you may need to be flexible about start times.
5. When making multiple appointments, determine the walking distance between appointments as they may be in different buildings. It is recommended to give yourself more time between appointments than you usually feel is necessary. Expect to go through security at each building.
6. Be sure to write down the scheduler’s name, along with the date and time of appointments granted. Be sure to thank the scheduler and use the utmost respect throughout all interactions.

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
• During the Awareness Fair, BIAA will have packets of legislative issue briefs that explain what legislation BIAA supports. Be sure to leave one of these packets with your representative at the end of the meeting. You can also print these off on the BIAA website.
• Tell the person you’re meeting with what you need to live life better. Try to be specific and keep it short.
• Invite your representative to the reception.

Metro Access to Capitol Hill

• Many people using the Metro to access Capitol Hill will be visiting use Capitol South which is on the Orange, Blue, and Silver lines.
• Plan your journey and allow at least 30 minutes of “wiggle room” in case of change of plans en route.
• When navigating the Metro station (underground), stand on the right side of the escalators to allow people to rush to work.
• Metro Access can help if you need accommodations. Note that there are elevators at most stations.
• Commuters move fast. Don’t take it personally.
• Click here for more information to help you plan your trip(s) ahead of time.