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‘Until the day I die’: Sweeney was an emotional leader for NJ disability community

Before his stunning defeat this month, New Jersey Senate President Steve Sweeney had earned an image as a political brawler.

The ironworker-turned-politician was said to bench press 400 pounds and locked horns publicly with state workers unions and Gov. Phil Murphy, a fellow Democrat. In 2019, he roasted then-Gov. Chris Christie with a memorable if unprintable epithet after a budget fight.

But there’s another side of the Gloucester County Democrat that’s less well known, one rooted in his 28-year journey with his daughter, Lauren, who has Down syndrome. Sweeney has been a key advocate for state residents with disabilities for 20 years, and his departure has the community worried about the hole his absence will create.

This year alone, Sweeney secured a long-sought $125 million boost in funding to reimburse school districts for “extraordinary” special-education costs and $600 million for students transitioning into adult programs after their educations were interrupted by the COVID pandemic.

Sweeney, 62, lost the election to Republican Ed Durr, a little-known challenger on a shoestring budget whose victory made national headlines.

“We are losing someone that not only had a vested interest in disability issues, but made them a signature of his legislation,” said Javier Robles, a Rutgers professor and organizer of the New Jersey Disability Action Committee, an advocacy group.

The group is pushing a bill that would do away with age and family income restrictions that keep those with disabilities from working while receiving Medicaid. It’s a measure Sweeney hopes to pass during the current “lame duck” session of the Legislature – possibly his final hurrah in office.

Sweeney credits his daughter with inspiring his public service. In an interview, he spoke emotionally, with both pride and anger, about the obstacles she has overcome. At one point, he was driven to tears.

“It’s about recognizing the value and beauty and wonder” of people with disabilities, he said. “Sometimes, you never find meaning in your life. Lauren gave me my purpose and meaning.”

“I will be an advocate for this community until the day I die,” he said. In the interview last week, he considered his career through the lens of his work on disability issues. (The following transcript has been edited for space and clarity.)

The election results were surprising. I don’t think many saw that coming.

It legitimately was a red wave: 12,000 people more voted in my district and they all voted Republican. I feel bad because we have done so many good things when it comes to the disabled community.

I felt like we were in a good place moving forward. I am hopeful that the folks who joined the Disability Caucus [a bipartisan group of 37 lawmakers] continue with the passion they have to make lives better. We have to improve in so many areas. I don’t want to see us go backward.

Looking back over your time in the Senate, what are you most proud of?

We banned the word “retarded.” People look at me when I say that like, “Really?” Yes. Words can either praise or hurt and that is a hurtful word. If you want to insult someone you call them a retard. I wanted to change the culture.

Phrases like “mentally retarded,” and “feeble-minded” were prohibited from state statutes in 2010. You said at the time that “the R word should be respect.” Do you think there is respect for people with disabilities? It often seems like efforts to help are only temporary fixes and then the community is forgotten again.

Let me put it to you this way. My life was changed when my daughter was born. I have a wonderful son. I am blessed to have two beautiful kids. But when Lauren was born I was brought into a new world. I am not ignorant. I just didn’t live it. When you don’t live it, you don’t understand it.

First, I had to learn what to do and then you start to see other things. When Lauren was little we would go into restaurants and people would stare. They would really stare at her. I would say, “Hey she’s beautiful isn’t she?” They would stammer and say they didn’t mean to do anything and “I am sorry.” I would say, “She has Down syndrome, not dumb syndrome and she doesn’t know why you are staring at her.” I believe as people, we are very good. There are always a few bad apples. Part of the problem is we don’t know each other.

The community has been worried since the election because, as you say, they had an advocate in you who lived it. What will happen now?

I am going to talk to my replacement [Sen. Nicholas Scutari, D-Linden], who is a very dear friend of mine. I am going to ask him not to let the progress we have been making go backward. He knows these issues because he lives them. The thing that I feel confident about is that my replacement cares a great deal. It’s just a matter of keeping it in front of him.


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