Tag: disability blogger

A community Blog

It might not surprise those of you who follow my work regularly that I don’t get out into the physical world as much as I’d like. Since the pandemic in 2020, the rising cost of living and the complexities of coordinating care have made “getting out” a major operation.While 95% of my advocacy work happens virtually—which has certainly made things more accessible—I have to be honest: I miss the personal touch. There is no digital substitute for a firm handshake with a colleague, a hug from a friend, or seeing a meaningful smile in person rather than through a Zoom tile.

That is why I am so energized to share that at the end of March, I am heading back to my “Happy Place”: Washington, D.C.To some, D.C. is just a place where politicians work. But as a child, I never wanted to be a baseball player or an astronaut. I wanted to be in Washington. I wanted to be where the laws are made, because I knew that was where someone like me could make the most difference.

Rolling—my way through Capitol Hill is my dream job. Representing the state of New Jersey and the individuals with disabilities in our community is a privilege I do not take lightly. It humbles me every single time.Before I can get on the road, the real work happens here at home. I am currently spending my afternoons contacting legislative offices to schedule visits on behalf of the New Jersey Council on Developmental Disabilities (NJCDD).These meetings are where the “Exposure Method” meets the “Legislative Process.We

We aren’t just going there to share stories; we are going there to ensure that when policy is written, our lives are not treated as an afterthought or a “survival math” equation.Some might say these seminars are just formalities and that nothing really gets done. I disagree. In advocacy, small things add up to big things. Every phone call to a staffer, every scheduled visit, and every face-to-face conversation on the Hill is a brick in the bridge between existence and a full life.

At 39, I’ve learned that the natural rhythm of life can sometimes feel like things are being taken away. But my message to you today is this: Don’t ever stop trying. Don’t ever stop reaching. Don’t ever stop getting excited.What might feel like “nothing” to someone else is “everything” to us. I can’t wait to head to the nation’s capital to represent you, and I look forward to telling you all about the adventures when I return. Keep on rolling. Keep on living.

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In the world of advocacy, we often talk about “the system.” We talk about it as if it’s a giant, immovable machine—something that operates at a distance from the people it’s meant to serve. But for the last several years in New Jersey, we had a leader who refused to look at the system from a distance. Instead, he got in his car and drove 148,000 miles to see the reality for himself. As Paul Aronsohn prepares to step down as the New Jersey Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families, I want to take a moment to reflect on his legacy. I’ve had the distinct pleasure of working alongside Paul through my roles with the New Jersey Council on Developmental Disabilities (NJCDD) and Self-Advocates Becoming Empowered (SABE)

In Paul, we didn’t just have an official; we had a witness. The Courage to Speak Truth to Power When Paul was first appointed by Governor Phil Murphy in 2018, he didn’t settle into a comfortable office in Trenton. As noted in the recent Star-Ledger profile, he submitted a report early on that described New Jersey as a “tale of two systems”—one that was functioning well and one that was failing.That kind of honesty is rare in government. It ruffled feathers. It made people in power uncomfortable.

Paul noted, he wasn’t there to make people comfortable; he was there because “lives, frankly, depend upon it.”That is the heart of advocacy. It is the willingness to say the thing that needs to be said, even when the administration that appointed you isn’t happy to hear it. Paul understood that his loyalty wasn’t to a political office, but to the families who were struggling to find housing, the individuals waiting for services, and the people trapped in the “benefits trap” that I often talk about.In my work with NJCDD and SABE, I saw firsthand how Paul valued the voices of self-advocates. He didn’t just speak for us; he created space for us to speak for ourselves.

He understood that the “Exposure Method”—the idea that people need to see the raw, unfiltered reality of disability to create change—was the only way forward. Whether he was visiting families in their living rooms or standing with us in Trenton, he was always listening. He took the “heartbreaking” stories he found on the road and turned them into actionable recommendations.He helped us navigate the “limbo” between existence and a full life.He

He knew that for many in our community, the difference between the two is often a single phone call, a specific waiver, or a caregiver who actually shows up. Paul leaves behind an office that is more vital than ever. He fought for it to be independent, and he fought for it to be loud. He showed us that the government works best when it is empathetic, transparent, and—most importantly—willing to admit where it is failing.While Paul is moving on to his next chapter, the 148,000 miles he traveled have left a permanent map for the rest of us to follow. He showed us that you cannot fix a system you aren’t willing to see up close. Paul, on behalf of the entire disability community in New Jersey, thank you. Thank you for the miles, thank you for the honesty, and thank you for being a “fearless” leader who wasn’t afraid to show his own heart. You’ve taught us that while the system may be a machine, the people fighting for change must always be human.

Paul’s departure shouldn’t mean a quiet period for the Ombudsman’s office. We must continue to support this office and ensure it remains a candid, independent voice for our community. Keep on rolling. Keep on living.

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In 2006, I was given my first job offer. To be a greeter at Walmart. I filled out the application online with tons of enthusiasm. I was in the final weeks of my senior year. This would have been a respectable first employment. I was hit with a horrid dilemma. Around their 18th birthday, there is a bizarre rite of passage that takes place for my community, and that is their initial enrollment for Social Security benefits: Supplemental Security Insurance (SSI)

I rushed home to tell my dad, he was furious.

“If you’re going to risk your life, don’t be a clown in people’s circus. You can’t grow there. Sooner or later, you will lose the benefits you need, and then what are you going to do? You’re going to go there with the best of intentions, saying hi to everyone, and people are just going to walk right by you. You could work there for 20 years, and you’ll be exactly where you are now. You don’t have a safety net in this life. Everything you do must be calculated. Do something where you can make a difference and make sure it’s worth it. “

The summer before I went to college, I did an internship for my local mayor’s office. That was the right fit. Her office was right by the high school. The school bus would drop me off. I spent afternoons there twice a week. I put together all the packets for the new residents. Complete with a signed letter from the mayor. I was a good office clerk. After 2 weeks, I was featured in the town newsletter. My dad kept that for the longest time.As a parting gift, they gave me a small blue piggy bank for me to save my money.

“I’ve always believed that, given the tools and equipment they need and on a level playing field, American workers can out compete and beat the pants off anybody, anywhere.”-Rnold Reagan.

In the midst of the pandemic, I worked with Assemblywoman Carroll Murphy to improve New Jersey’s Workability program. It required an update. It is not perfect by any means, but it’s a needed step in the right direction. While everyone was watching Netflix and gaining weight during the shutdown. I worked with the NJCDD to launch the disability legislative caucus across the Garden State. It is completely nonpartisan with leadership from both sides of the aisle. The goal is to foster conversations with legislators before bills are passed into law.

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