As advocates for MDA, we share a common goal: to drive meaningful change for those living with neuromuscular diseases or affected by them as a caretaker, loved one, etc. To be the most effective grassroots advocacy program possible, our advocacy work must reflect the diversity of the community we represent.

How can we create an inclusive advocacy space for everyone who wishes to be involved? 

Understanding Diversity in Advocacy 

 When we think of diversity, we often think of it in a workplace context, but it extends far beyond the office. Fundamentally, diversity in advocacy means that advocates have a wide variety of backgrounds and experiences that can contribute to the perspectives they share in their advocacy work. Advocates have unique experiences shaped by their lives, race and ethnicity, socioeconomic status, gender identity, skills, and more. 

It is paramount to consider the uniqueness of everyone that participates in advocacy. When all voices are heard, our advocacy becomes more comprehensive and can improve public policy outcomes for everyone. Think of it as “a rising tide lifts all boats.” 

Inclusivity 

Of course, we always need to think before we speak and choose our words with respect. This extends to using language that is considerate and respectful of others who we meet in the course of our advocacy work. When speaking, avoid assumptions about a person’s intelligence, experiences, or other needs. Let others share what they need to be comfortable. For example, we use the following phrases to refer to members of the neuromuscular community:

• people living with disabilities
• those living with neuromuscular disease 

We use these phrases because they are inclusive of everyone we advocate on behalf of, acknowledging them and respecting their experiences.  

Additionally, an important facet of storytelling is feeling comfortable and empowered to do so. Offer others space to speak and share their stories, as each person is unique and adds value to our grassroots advocacy efforts.

Making Advocacy More Accessible

If others can’t consume your content due to a lack of accessibility, it reduces the number of advocates that you can reach and devalues those who cannot access it. For advocacy to be effective, it needs to be accessible. How can we make it more accessible for all?

• MDA works to ensure that any online resources, like webinars and social media graphics, are accessible. We use captions for videos, offer transcripts for audio, and ensure that documents are compatible with screen readers.
• If you're organizing in-person events, ensure that your venues are wheelchair accessible and provide an area for respite, if possible.
• Be flexible! Some folks may prefer in-person advocacy opportunities, while others may prefer virtual options, such as writing letters or calling their members of Congress. Try to offer a variety of options to include as many advocates as possible.
• Encourage allies to participate in MDA’s advocacy work and empower them to support our community. Allies can help broaden our reach, challenge stigmas, and amplify our message. Share MDA resources as much as possible when you have an opportunity. 

Leading by Example

By serving as an example of an empowered advocate, you are the model for others who are looking to strengthen their advocacy skills and expertise. It’s an ongoing journey that requires commitment, empathy, and flexibility.

Our advocacy work is powerful because it’s driven by individuals from all backgrounds who believe in access to resources and treatments, equal opportunity, and the ability to live the lives they wish for those living with neuromuscular diseases. We cannot do this work without you! Thank you for your commitment to MDA’s mission and for your work on behalf of the neuromuscular disease community to support a more inclusive and accessible world! 

Up Next

Congratulations! You have reached the end of this year’s MDA Advocacy Toolkit blogs. However, we’re not going anywhere – next year, we’ll take an even closer look at some advanced advocacy tools and techniques, as well as provide helpful deep-dives into the systems, institutions, and processes that dictate how we do our public policy and advocacy work.