Introduction to advocacy

Why should I get involved in grassroots advocacy?

Grassroots advocacy: Educating elected officials about necessary changes to public policy.

The day you or someone you love experiences a spinal cord injury, you become an advocate. There are many ways a person can advocate, and seemingly as many fancy tools and tactics, both online and offline, as there are topics on which to advocate. But at its core, effective advocacy is about educating people on a specific issue and moving them to action.

It begins with one person and is most effective when the messenger can communicate on a personal level. Most legislators are not experts on every issue, or even most issues. They need the information that you have -- your story -- in order to make informed policy decisions.

With so many issues before them, it is your responsibility to educate your elected officials about the costs associated with paralysis, the importance of continued funding for innovative research and the impact that lawmakers’ decisions have on the quality of life of people living with SCI and paralysis.

You don’t need to be a scientist, economist, or paid professional lobbyist to be an effective advocate. In fact, your voice is more valuable – this is your life, and your story.

Building relationships

Strong relationships translate into effective advocacy. And 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.

It may seem obvious but trust with a legislator and his/her staff is earned by being honest, responsive, respectful, clear in your requests, and persistent. Consistently sharing important information with your elected officials (not only when there is a critical policy debate) will result in you being viewed by your lawmaker as a credible source of information on spinal cord injury and paralysis. This becomes extremely valuable when we need to turn our legislative leaders for support and assistance regarding a specific piece of legislation or policy. Building these relationships takes time, but yields incredible dividends.

Don’t know who your legislators are? Simply visit congress.gov and enter your zip code.

Opportunities for advocacy

Christopher Reeve said it best: “Nothing of any consequence happens unless people get behind an idea. It begins with an individual and they share the idea with more individuals…and eventually it becomes a movement.”

This toolkit provides some basic guidance on how to effectively use letter writing, phone calls, emails, social media, and face-to-face meetings to develop strong relationships and influence your senators or representatives. However, being an advocate for spinal cord injury and paralysis includes more than just direct communication with elected officials.

Public awareness can be raised while waiting in line at the grocery store, by sharing information with your child’s teachers, by distributing educational material at community events, and by including information on your Facebook page or in your blogs or tweets.

Advocacy takes many forms and often occurs outside of Washington, DC. Good advocates see opportunities and take advantage of them. If someone seems interested, educate them!

Raising public awareness

Direct communication with elected officials is a powerful tool for communicating your views on a particular issue. There are additional steps that you can take as an advocate at home in your own community. The following is just a sample of the type of activities you could undertake.

Get involved -- stay informed!
To be an effective advocate, you must be informed. Although many resources exist to help connect advocate with the latest news and developments on paralysis, one of the easiest ways to stay current is by registering for our online newsletters. If you are unsure where to start, we encourage you to begin by subscribing to the Reeve Foundation newsletter. Our newsletter will not only provide timely information on the issues facing people living with paralysis, but it will also help advocates learn more about the Foundation and its upcoming events.

Community Advocacy -- Approaches and Opportunities
An easy way for advocates to get involved is by participating in existing Reeve Foundation activities. To do this, we encourage you to take action and join the Foundation’s Action Network today.

Connect with other advocates
A good way to increase your effectiveness as an advocate is by getting others to help share your message. There are many ways to do this, including the use of online networks, message boards, and community forums dedicated to spinal cord injury and paralysis.

Many of these message boards and online communities already exist -- including the Paralysis Community hosted by the Reeve Foundation. If you haven’t already, we encourage you to join the Foundation’s Community to meet other advocates, share your story, and to discuss issues related to paralysis. Many successful call-ins and community events have been organized by one or two people using this method of communication. If you meet someone who shares your position on a particular issues, work together to form a coalition to take action!

Download the Reeve Foundation Advocacy Toolkit in its entirety as a PDF.