Independence Care System (ICS) Advocacy Specialist Marcus Johnson has been appointed to both the New York State Independent Living Council, Inc’s (NYSILC) Executive Committee and the Consumer Directed Personal Assistance Association of New York State’s (CDPAANYS) Consumer Board.
Marcus, a longtime ICS member and disability rights advocate who is also a leader of the Civics League for Disability Rights (CLDR), will continue his advocacy efforts supporting people with disabilities across New York State in both roles.
NYSILC supports the statewide network of Independent Living Centers and increases resources for the independence of people with disabilities in New York, while CDPAANYS, a grassroots campaign, is focused on preserving the Consumer Directed Personal Assistance Program, a Medicaid-funded program that allows people with chronic illnesses and physical disabilities to hire, train and supervise their own caregivers.
Marcus, who holds graduate degrees in rehabilitation, counseling and social work, spoke with me about his appointments, what they mean to him and why advocacy for people with disabilities is crucial, especially with current cuts to Medicaid services in New York.
Congratulations on the news! What was your initial reaction?
With all the changes happening in Medicaid, and me being an advocacy specialist, I know I can help make a change. By being more involved, I can let the CLDR and ICS membership know what’s going on with our ever-changing Medicaid program.
On a personal level, I was shocked. I didn’t expect this. This is a great thing for me. I want to be more involved. It’s funny. ICS President Regina Estela said, “You should look into CDPAANYS” and that same weekend, when I applied to be on their board, I saw there was also an opening for NYSILC.
I tend to underestimate what I can bring to the table. Sometimes you don’t see yourself in a position of power because there’s no one who looks like you there. When you don’t see a CEO who is black or brown, you don’t think you’ll get to the top to make a difference. But we can. I think these roles will help me become a better advocate.
What will your role entail as a Consumer Board Member for CDPAANYS? What will your role be with NYSILC?
With CDPAANYS, I am on committees for branding and for mission. My role with NYSILC has not begun yet. I am in very good company at CDPAANYS with ICS members and disability advocates T.K. Small, who is on the ICS Board of Directors, and Jessica De La Rosa!
How important is it to be affiliated with these organizations? Do these appointments tie in with personal goals of yours to work to make a difference in the lives of people with disabilities?
I’m happy for these opportunities. I want to be more knowledgeable of how the world is affecting people with disabilities, and how I, and the community, can make a change. I also want to do more public speaking.
It always fascinates me how there’s someone else who doesn’t have a disability who is speaking on our behalf. How do you know my story better than me? Let me tell mine.
People also assume that because of what they see, my wheelchair, they know me and my background. I’ve been disabled for 29 years. I’m a classically-trained dancer who attended Juilliard.
I like to say to clients, I love to give light to insight. If I can provide more light, and provide people with insight on how people with disabilities live their lives, I’ll do that. If I am able to help other people with disabilities to be more powerful, to help them learn who they are, where they want to go, what is impacting them adversely, I want to help them with that. To give them guidance.
And you’ve helped others tell their stories and remain informed on the issues facing people with disabilities through the Civics League, haven’t you?
I’d like to think so. Sometimes, members have been frustrated with what’s going on with cuts to services and the state of Medicaid. There is bickering. I understand. What I love is when Civics League President Sharifa Abu-Hamda provides guidance, when we all speak, and everyone understands what’s going on.
We have to structure ourselves. We have to step on some toes to get things done. We can compile our complaints, our stories, and use them. It’s inspiring to be a part of that. I want to be there for them.
What are you hoping for in 2021?
Honestly, I just want to be healthy. The healthier I am, the more I can be in the mix of helping with all these changes, especially Medicaid. For some people, if something is not their problem, they don’t see it as a problem. These Medicaid cuts are scary. And for people with disabilities, there are homecare services, medical equipment needs, wheelchair needs. These cuts will impact our quality of life to the point where we won’t have a life – and eventually, when people get older, even if they don’t have disabilities, the cuts will effect their lives too. Now that I’m with CDPAANYS and NYSILC, I can gain even more knowledge and insight from members. What I learn I can share with the Civics League. Because we have to say something. We have to do something. We have to take action.