Finding And Amplifying Your Voice As A Disability Rights Advocate

Advocacy is a powerful force that drives positive, necessary change. For people with physical disabilities, it’s also one of our greatest tools for survival, as we regularly find ourselves at the forefront of battles and barriers, fighting for inclusivity, accessibility, and equal opportunities.

From inaccessible primary care, to a transportation system that fails to meet the needs of wheelchair users, to insurance complications for necessary equipment to support our mobility—not to mention the constant cuts to Medicaid funding—the challenges we face are exhausting, grueling and never ending.Most recently, the State wants to cut $125 million from the Health Home program in the proposed 2024-25 New York State budget—a move that would gut the Health Home program, which is vital to thousands of high-risk individuals, including people with physical disabilities, one of the most underserved and vulnerable populations in the State.

People with disabilities must continue to advocate

What’s crystal clear is the need for advocacy to preserve the supports and services we need to survive, and thrive, in our communities. We need to organize and amplify our voices.

We’ve seen the power of advocacy firsthand. Advocacy led to the passage of the Americans with Disabilities Act (ADA), a significant landmark civil rights law that has changed the lives of many with disabilities. Through the efforts of the Civics League for Disability Rights (CLDR), an independent, volunteer-led advocacy group of New Yorkers with disabilities, of which I proudly co-lead, we were able to prevent the closing of Independence Care System (ICS). Though ICS no longer operates as a managed long-term health plan, it provides invaluable care coordination, wheelchair services and other support for people with disabilities who need it most.

Change starts with self-advocacy. There are a number of steps you can take to learn how to become an advocate, what issues you want to focus on, and how to vocalize your position. In the words of Madeleine Albright, former U.S. Secretary of State, “It took me quite a long time to develop a voice, and now that I have it, I am not going to be silent.” Finding one’s voice as an advocate with a disability requires self-discovery, resilience, and a commitment to making a difference.

Advocacy tip 1: Self-reflection and understanding

Begin with self-reflection. Take the time to understand your own experiences, challenges, and strengths. Reflect on how your disability has shaped your perspective and what aspects of advocacy resonate with you the most. Acknowledge the personal and shared struggles within the disability community, as this awareness will be the foundation of your advocacy voice.

Advocacy tip 2: Educate yourself

Become well-versed in disability rights, laws, and the history of advocacy. Stay informed about current events, policies, and emerging issues within the disability community. Knowledge is a vital tool.

Advocacy tip 3: Connect with the community

Engage with the disability community to gain diverse perspectives. Share experiences. Learn. Attend events, join support groups, and participate in online forums. Seek partnerships with like-minded individuals, organizations, and influencers. You’ll develop a support system as you navigate your advocacy journey.

Advocacy tip 4: Identify your passion and purpose

Identify the issues that resonate with you on a personal level. Whether advocating for accessibility in public spaces, challenging stereotypes, or promoting inclusive employment practices, finding your niche will give your advocacy voice authenticity and power.

Advocacy tip 5: Speak your truth

Your voice is unique, and your experiences are valid. Speak your truth with confidence and authenticity. Share your personal story, emphasizing the challenges you’ve overcome and the lessons you’ve learned. Your narrative can inspire others and humanize the issues you’re advocating for.

Advocacy tip 6: Utilize social media and technology

Use these powerful tools for advocacy. Create a platform to share your thoughts, experiences, and information. Utilize hashtags, engage with influencers, and join online conversations to reach a wider audience.

Advocacy tip 7: Consider policy advocacy 

Often the way to change is through policy. Find out who the key elected officials are and organize meetings with them. Organize letter writing campaigns, protests, or whatever method of advocacy you feel is best to let those in power know your message.  

Our advocacy with the Civics League has shone a light on the issues and resulted in important victories. We published a piece in Health Affairs Forefront last year that spoke truth to the healthcare barriers people with disabilities face, and how a specialized plan would pave the way for accessible care that would lead to better health outcomes for our population. We’ve also demanded change on the health support front with the New York State Department of Health (DOH), which resulted in ensuring that people with disabilities have access to wheelchairs for community use, catheters to prevent urinary tract infections (UTIs) and A+D Ointment as a moisture barrier cream.  

Start your advocacy journey today

Embrace your advocacy journey with the understanding that your voice is a powerful tool for creating a more inclusive and equitable world. Once you’ve found your voice, use it unapologetically and persistently to make a lasting impact.

If you’re looking to get started on your journey, or want to share your own advocacy tips or stories, I invite you to join the Civics League for Disability Rights, an independent, volunteer-led group of New Yorkers with disabilities dedicated to advocating for the constitutionally guaranteed right of people with disabilities to live independently in our communities. To learn more about the Civics League, email civicsleague@gmail.com.

Marcus Johnson is a dedicated advocate and leader, currently serving as the Manager of Advocacy Programs and Initiatives at Independence Care System (ICS). He is also co-leader of the Civics League for Disability Rights (CLDR).  

Marcus recently co-authored “No Choice But To Become Advocates: Fighting For An Integrated Plan For Dually Eligible Adults With Disabilities,” a piece that appeared in Health Affairs Forefront that focused on the challenges people with disabilities face when it comes to quality, equitable healthcare. He has also appeared on Medium, as well as BronxNet Community Television, where he has discussed how the ICS Health Home program supports the health, mobility and independence of people with disabilities, as well as disability rights advocacy and social justice.