For far too long, people with disabilities have been marginalized, silenced and overlooked. People with disabilities urgently need to amplify their voices, and that starts with self-advocacy. Advocacy is an essential tool for our survival—for the preservation of our health, mobility and independence.
Our fight for equity, inclusion, and quality care feels endless. As co-leaders of the Civics League for Disability Rights (CLDR), an independent, volunteer-led advocacy group of New Yorkers with disabilities, we advocate for ourselves and the community while sharing ideas, tools, and information about how to effect change in response to public policies, legislation, or societal barriers that directly impact our overall wellbeing.
For instance, when New York State released the 1115 Medicaid Waiver proposal to address health disparities and healthcare, and when the governor announced the formation of a Master Plan for Aging (MPA) that featured no input from people with disabilities, we’ve had to raise our voices to remind our leaders to include us. This is in addition to countless issues our community faces, including continued cuts in Medicaid funding for supports and services, inaccessible primary care, and looming threats to the Consumer Directed Personal Assistance Program (CDPAP).
The advocacy of the Civics League has led to many victories. For example, we’ve fought to ensure that people with disabilities have access to A+D Ointment as a moisture barrier cream, have additional catheters to prevent urinary tract infections, and can access wheelchairs for community use after demanding change with the New York State Department of Health. And with support from our membership, disability rights advocates, nonprofit leaders, and physicians across the state, we were able to save Independence Care System (ICS), a Medicaid managed long-term health plan turned Health Home that provides care coordination and support for people with physical disabilities—many who require hours of home care and specialized rehabilitation and wheelchair services.
Wherever you may be on your advocacy journey, we have some guidance to share for finding your voice and fighting for the change you desire.
Listen and observe. Having a true understanding of the issues facing people with disabilities and engaging with those who can speak to those issues will allow you to gain insight and knowledge. You’ll also develop a network of supportive advocates when fighting for your cause.
Educate yourself. Become familiar with the disability rights movement. Read about the latest disability news and stay up to date on current news and issues. This will help you decide how you want to direct your advocacy efforts.
Connect with different disability rights groups. Many will offer plenty of platforms, campaigns and resources for you to advocate, and provide for learning opportunities to grow as an advocate.
Tell your story. No one knows your story better than you. It’s time to tell it. Whether through social media, a personal blog, or as part of a letter writing campaign, your story is a powerful advocacy tool that can inspire others to share their own, influence public opinion, and raise awareness among policymakers.
Legislation and policy play a tremendous part in advancing disability rights. Scheduling meetings with elected officials organizing peaceful protests, joining a letter writing campaign, making phone calls or participating in social media campaigns drives your message home.
Together, we can push back on the challenges with receiving quality care for people with disabilities and work toward a solution that will allow for equitable, accessible services. Through advocacy, your actions can be powerful enough to make a lasting impact that supports our disability community.
Sharifa Abu-Hamda and Marcus Johnson are co-leaders of the Civics League for Disability Rights, an independent, volunteer-led group of New Yorkers with disabilities who advocate for themselves, their community and for change in the healthcare system for people with physical disabilities. To learn more about the Civics League, email civicsleague@gmail.com.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.