Mental Health Advocacy for Yourself and Others
May 10, 2021 / Mental Health
by Diana Spore, PhD, MGS
What does it take to be an advocate individually and as part of a team or group? One voice can make a difference; for example, by sharing your story, you can empower yourself and others. However, by being part of a group, individuals can draw on their unique personal strengths and learn about a range of issues and perspectives. Also, the group can forge connections, and those best suited can take the lead on completing certain advocacy-related tasks or efforts.
Let’s start with addressing what is needed to advocate for yourself well. Then I will present nine strategies for positioning yourself to be a strong mental health advocate for others. Note that a key word used here is “health” rather than “illness.”
Advocating for Yourself
A starting point: in order to be a strong advocate for yourself, it is important to expect that decisions about your care (like medication use) should be made in a partnership between your health care provider and you. This is often called “shared decision-making.” In fact, if that opportunity is blocked, you most likely should discuss the issue with your provider first and, if that is not possible, select another psychiatrist or mental health provider.
You are the expert on yourself, including knowing the medications that have worked and have not worked, the side effects that you will not tolerate, the risks you are not willing to take (for example, a greater risk for tardive dyskinesia or early-onset dementia). You should demand to be fully informed about risks and benefits, side effects, all of which are needed to provide informed consent. Always remember that research really hasn’t examined long-term effects of many psychotropic drugs. Being pressured to sign a form indicating that you provided consent when you haven’t been informed fully or don’t understand what is being talked about is a violation of your consumer rights. To be an advocate for yourself, know your rights. If you want someone else to help you talk to your provider, invite that person to your virtual or in-person appointments.
Ultimately, the final decisions about your care should be made by you, after consulting with a health care provider you trust, assuming you are not incapacitated. Make sure you have psychiatric advance directives in place, including designating a proxy who will speak for you if you are not able to speak for yourself. All of this will empower and protect you.
1. Become familiar with what advocacy means, what types of actions are advocacy-related in nature. The Adult Advocacy Centers (AACs) says, “Advocacy can mean different things to different people and can change depending on the situation. Generally, advocacy means taking an action or actions to support a person, cause or policy. People can advocate for themselves, others or both.” There are three types of advocacy: individual, group and systemic. Self-advocacy has been addressed above. In group advocacy, you make the effort to advocate for others and possibly also yourself, if you are part of the group. As noted by AACs, “groups of people can advocate for services, rights, issues, or other things that are important.” Systemic advocacy is when individuals join forces to challenge the status quo and advocate for changes in laws or policies that affect individuals facing mental health issues. Even small steps toward advocating well can make a difference. At a minimum, it empowers you and helps you to find and share your voice.
2. Those desiring to be strong mental health advocates should discover and consider what system-level and personal-level issues that they are are willing to advocate and fight for. The following issues may be deemed to be worth advocating for or against, individually and as a group: (1) for medication optimization; (2) for shared decision-making; (3) against forced psychiatric treatment; (4) against seclusion and restraints; (5) for trauma-informed care; (6) for non-traditional programming, such as Open Dialogue, which has been shown to be very effective; (7) against the use of or provision of psychiatric diagnoses; and (8) against stigma.
3. Develop your skills to be a strong advocate. Depending on your interests, you could consider developing writing, self-editing, public speaking and research skills (for instance, learning how to assess whether or not research is solid and designed well). You could focus on writing and sharing your story about facing mental health challenges and your recovery journey. While very few of us can be skilled in every possible advocacy effort, we can work with others, drawing on their strengths and skills, to create a powerful team.
4. Become familiar with websites, books and research articles about mental health advocacy, causes, issues and policies. Learn from others about how to critique them, vet works and determine if they are credible resources. For example, new advocates could join together and develop reading groups. Become well-versed on one or a few major topics that you are passionate about. However, take time to listen and hear what others have to say about additional topics that you are not as familiar with, be ready to ask questions, and question their positions. Be familiar with mainstream advocacy and consumer rights groups and their missions as well as vision statements. Be aware of new “grassroots” organizations that challenge the status quo.
5. Share your story to empower yourself and others, revealing that recovery is possible and should be expected.
“When we deny the story, it defines us. When we own the story, we can write a brave new ending.” - Brene Brown
Sharing your story can be done one-on-one, in small groups where your privacy and confidentiality are preserved and in larger groups. Consider the benefits of sharing your story; however, be aware of the risks to you as well. Also, it isn’t enough to just share your story to be a strong advocate. You need to know about the strengths and weaknesses of the current mental health system and be prepared to challenge the status quo based on what you have experienced. Know the facts, know what the overriding position is about major mental-health-related topics that you are passionate about, and be prepared to present another perspective, and to do it well.
6. Use “the power of the pen” as a powerful advocacy mechanism. Learn how to frame letters to politicians and newspaper editors, how to write position papers. Consider collaborating on white papers, being willing to debate yet to find common ground, being aware of popular positions and their strengths and limitations. Share outside-of-the-box ideas. Consider recruiting a researcher and skilled editor for your team.
7. Develop public speaking skills, and increase your comfort with speaking in front of an audience. Start by speaking one-on-one about issues you are passionate about and want to advocate for, sharing your perspectives and experiences. Consider presenting your views or your story in front of small groups or in front of attendants at conferences. If you are new to public speaking and would like to “practice,” consider speaking in front of a small number of peers, asking listeners to provide feedback by asking you questions and to providing suggestions. Becoming a strong public speaker doesn’t happen overnight. Build your strengths and comfort by engaging in a range of opportunities as you find them.
8. Volunteer and be an active learner, even during this pandemic. You can make a difference in the mental health advocacy movement by donating funds. However, you can be involved by working directly with individuals facing mental health challenges. Some options include being trained to be a “listener” on a crisis/care phone line, making “check-in” phone calls, becoming a peer support specialist or facilitating groups at peer support agencies or programs. Spread the word about mental health and let people know that recovery is possible and should be expected. Take advantage of educational opportunities to learn about mental health issues, programming and advocacy. If you are a peer support specialist, enhance your skills by becoming a WRAP® (Wellness Recovery Action Plan) facilitator or learning about WHAM (Whole Health Action Management).
9. Forge connections in the mental health advocacy movement. Get the message out by publishing, using social media platforms and presenting at conferences, organizations and agencies in your community and beyond. Make it a priority to fight against stigma and to fight against use of language that promotes stigmatization.
When working with an advocacy group, find your passion, embrace active learning and be a dedicated and enthusiastic collaborator. While it is important to find and share YOUR voice, work toward being an active team-player with others, all of whom share a mission and vision for making a difference in mental health advocacy. It doesn’t mean you have to always agree; you should feel free to debate while looking for common ground and helping each other become the best possible advocates for your individual and shared goals.
Diana Spore is an advocate for individuals facing mental health challenges and those who are living with dementia, a writer/editor, and a mental health consumer in recovery. Spore received her Master’s degree in Gerontological Studies from Miami University (Ohio), and earned a PhD in Human Development and Family Studies, with a concentration in aging, from Penn State. She completed postdoctoral training at Brown University. Spore’s areas of expertise include mental health and aging, mental health recovery and trauma-informed care, medication optimization, long-term care, caregiving, and psychotropic drug use and inappropriate drug use among older adults. She is a former Board member of the Mental Health and Recovery Board of Ashland County (Ohio; MHRB). She was Editor-of-Chief of TAPESTRY OF OUR LIVES, an anthology of works created by individuals in recovery, a project that was done under the auspices of the MHRB. Spore served as Project Lead for a “Writing for Recovery” initiative, MHRB, and engaged in all aspects of the project, which has resulted in sustained spin-off efforts. Diana Spore has expertise in creative writing, writing for recovery, journaling for caregivers, legacy writing, and advocacy writing.