What is Advocacy?

During our Youth Ambassador Rising Leaders training in Orlando, Florida this month, we discussed the different types of advocacy.

According to the Merriam-Webster Dictionary, advocacy is defined asthe act or process of supporting a cause or proposal : the act or process of advocating something.” Advocacy is not only lobbying your Members of Congress and Senators, though that is also an important part. As defined by the West Virginia University Center for Excellence in Disabilities, there are three basic types of advocacy:  self, individual or systems.

Self-advocacy is important for any individual, but even more important if you have Tourette Syndrome or a Tic Disorder. This type of advocacy is your ability to effectively communicate or convey your own personal needs and rights. This can be with teachers or professors, employers, managers/employees at public establishments, or even with family and friends. In order to find the best way to self-advocate, it is key to understand your needs, your legal rights and responsibility and be able to communicate these to others in a positive way to effect change. No-one knows your needs better than you, so developing the ability to advocate for yourself is critically important, especially once you become an adult. Self-advocacy helps educate those around you and can increase awareness surrounding Tourette Syndrome.

Individual advocacy involves a person or group of people who advocate for one or two individuals.

According to the group Advocacy for Inclusion “Advocacy is having someone to stand beside you if you think something is unfair or that someone is treating you badly and you would like to do something to change it.” When your parents or family members advocated on your behalf, they were engaging in informal individual advocacy. Formal individual advocacy is typically when an organization pays their staff to advocate on behalf of individuals or you hire a lawyer or other advocate to represent you.

Systems advocacy has a broader focus to change policies, laws or rules that impact how someone (or a group) lives their life. Systems advocacy can be at the local, state or federal level of government or organizations. Each Spring, TAA’s Advocacy Day is a great way for you and your family engage in systems advocacy for the Tourette Syndrome and Tic Disorders community as a whole. Participants advocate for key policies federally in state and district offices of your Representative and Senators. If you have an interest in engaging in advocacy for the TS/Tic Disorder community, we are looking for advocacy outreach coordinators to engage with state chapters/support groups to increase advocacy with the state/district offices of the Members of Congress and Senators in your state. In addition, August recess provides a fantastic time to set up meetings with your Member of Congress or Senators.

If you are interested in doing some meetings in August, please contact your state chapter/support group leader to help coordinate with others in your area. If you do not have a state chapter or support group or do not know how to contact them, please reach out to Joe Grappone at [email protected] for contact information, or he will work with Diana Felner to provide you with guidelines on how to set-up and conduct meetings in your district and state with your Congressmen and Senators during the August recess. The more meetings you conduct in your district/state, the more you can increase awareness on the importance of funding for TS research and programming and the need for improvements to access to care and treatment. No matter which type you use, advocacy is an important tool that helps to improve lives and increase awareness of others.