Introduction to Advocacy

When you or a loved one sustains a spinal cord injury, it can motivate you to become an advocate for the SCI and paralysis community as a whole.

Advocacy takes many forms—from educating just one person about what it means to live with an SCI to informing elected officials about the issues involved, with the goal of moving them to take action and make important changes to public policy.

Working With Elected Officials

The idea of working with elected officials may seem intimidating, but rest assured you don’t need to be a scientist, economist, or a paid professional lobbyist to be an effective advocate.

With so many issues before them, elected officials need your help to understand the costs associated with paralysis, the importance of continued funding for innovative research, and the true impact that their decisions have on the quality of life of people living with SCI and paralysis. By sharing your own story, you can help them make informed policy decisions.

Ways to Contact Your Representatives

You can contact your elected representatives via phone, email, and/or snail mail.

Letters and emails are a great way to introduce yourself and tell your story in a personal, compelling way that will catch the attention of legislative staff. You might want to start your letter or email with a personal anecdote, for example, and segue into the challenges and issues that need addressing on a legislative level. Always include your state or district and explain that you are working with the Reeve Foundation

Phone calls are particularly effective just before an important vote is scheduled, when your legislators’ staff is trying to tally their constituents’ opinion on an issue

If you don’t know who your legislators are (don’t worry, you’re not alone!) visit www.congress.gov and enter your zip code. From there, you should be able to find their contact information.

Face-to-Face and Zoom Meetings

Face-to-face meetings—whether in person or via a video conferencing technology—are powerful ways to advocate; most congressional staff will tell you this is the most effective form of advocacy.

Most offices have a health legislative assistant that can help you schedule a meeting. Let the Reeve Foundation know you’ll be meeting with legislators by calling 202-715-1496.

Tips for Building Productive Relationships

No matter how you choose to communicate, keep in mind that building relationships with elected officials, as with anyone, does not happen overnight. It takes time and effort over the long term, and it’s built upon trust. Strong relationships translate into effective advocacy.

You should always:

  • Be honest. Being upfront with elected officials about who you are and what your goals are is the basis for a productive, trusting relationship.
  • Be respectful. When advocating for issues you care about it’s important to be courteous and respectful to everyone you meet. This increases the chances key decision makers will want to listen to your ideas.
  • Be responsive. If someone from a legislator’s office calls or emails, follow up as soon as you can. If you need more time to gather correct information, let them know and get back to them as soon as possible.
  • Be clear. With so many pressing issues, it can be easy to layer one request on another. But it’s easier for people to help you when you are clear and concise about what you are asking for.
  • Be well-informed and consistent. Share important information with your elected officials regularly, not only when there is a critical policy debate. As a result, you’ll be seen as an authority on spinal cord injury and paralysis. (One of the easiest ways to stay up to date on current issues is to subscribe to the Reeve Foundation newsletter.)
  • Be persistent. You may not get what you want on the first attempt or meet with who you want on the first request. But keep pushing. Persistence yields results.

Raising Public Awareness

Although direct communication with elected officials is a powerful tool for communicating your views on an issue, there are additional steps you can take in your own community.

You can raise public awareness by sharing information with your child’s teachers, by distributing educational material at community events, and by attending walks or other activities designed to benefit the SCI community.

Social Media

Legislators’ offices pay attention to what their constituents are saying via Twitter, Facebook, and other social media platforms.

Social media allows constituents to communicate with multiple people in the legislator’s office. For example, a tweet directed to a legislator’s Twitter handle may be seen by the communications director, legislative assistants, chief of staff, and perhaps even the legislator him or herself. Another benefit of social media is that it allows you to expand your message beyond your state.

Online networks, message boards, and community forums dedicated to spinal cord injury and paralysis, such as the Reeve Foundation’s Paralysis Community, provide another excellent way to connect with other advocates and form action coalitions.

Ready to get started? Become an advocate today!!