‘Until the day I die’: Sweeney Was An Emotional Leader For NJ Disability Community
Written by Gene Myers NorthJersey.com
This editorial was shared to CNBNews of Gloucester City, by Senator Steve Sweeney’s Office, Trenton, NJ
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."
His political life may not be over. An ally of South Jersey power broker George Norcross, Sweeney said he may run again, perhaps for governor.
"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.)
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.
Will Sen. Scutari be part of the Disability Caucus?
I can’t speak for him, but I’m going to ask him. His mother has a disability, so I think he’s going to be very sympathetic. And by the way, I am not going away. I may have lost the Senate seat, but I still have everyone’s phone numbers. My passion is not going to go away.
Tell me about the moment you decided to go into public service.
I sponsored the Paid Family Leave Act. That came from my experience in the hospital [with his daughter]. We were in the neonatal unit for 75 days. I watched parents going back to work while their loved ones were sitting there.
What flipped the switch for me was Lauren. She wasn’t even 5 pounds when she was leaving the hospital. They said she wasn’t growing anymore, but she needed to be home. They sent her home with feeding tubes. My hands are huge and I am trying to shove this feeding tube down her nose. Every time I moved she jumped, which meant I am making it uncomfortable for her. I had this beautiful, special child and she is going to have everything against her. I had to do something but I had no idea what. Then I had an opportunity to run for county freeholder. A friend asked me to run. I said I would run, but I wanted to build schools for special needs kids.
Everyone talks about inclusion but inclusion is not for everyone. Lauren went to my local school district from K-8 and never had one girl invite her to play with dolls or go to a party. She was depressed. I don’t think people realize disabled people have opinions and they have feelings.
What are some of the things that you’ve been able to make better through the years?
In Gloucester County, we created a program called ACT: Adult Career Transition. We built a medical school on the campus of our county college that is going to have doctors working with special-needs people so it’s not a rare occasion that you find somebody who has been trained on how to work with somebody with a disability. We are building apartments for independent living with businesses on the bottom with the goal of helping the disabled to be employed. We have a school for autistic children. I wanted to replicate this and make them all statewide.
What are some things you wish you could have done?
I have gotten nowhere near enough done for me to be satisfied. There is so much I still want to see happen. I want more funding for daily service providers [personal aides who work in group homes and other programs]. I want more funding for [day] programs.
There is a rumor that you can bench press 400 pounds.
One time I could bench press 440 pounds. That was when I was in my early 30s. I was a pretty tough guy and then this little girl came along and made me tougher.
You have said that you want to continue to be an advocate. Is there another podium that you are looking to step to, another public role?
A lot of people keep asking me that and I don’t really know what it is right now. People say run for your seat again. Can I? Yes. Will I? I don’t know. People say run for governor. Can I? Yes. Will I? I don’t know.
This community is always in my mind. They are always going to be at the top of the pile, a priority. I want New Jersey to be the best place for a person with a disability to live, not 35th [as it was ranked in a survey this year]. We have to make it so that government isn’t a roadblock for someone to have a successful life.