ISELIN, N.J. — Patrice Jetter and Garry Wickham settle down for a steak dinner and some wine.

They raise their glasses for a toast. They treasure their life together, and have for many years — they perform as an ice skating duo, dance and relax in the pool.

But it isn’t long before Wickham has to return to his own home.

He’d rather stay. He wants to marry Jetter, and she wants to marry him.

But they can’t risk looking like they’re living together. Because if they did, they’d face a devastating penalty — losing their health insurance.

Jetter, who lives in Hamilton Township, and Wickham, who lives in Princeton, are just one of many couples who have disabilities and can’t get married or live together because they depend on Medicaid and government benefits.

Jetter and Wickham tell their story in “Patrice: The Movie.”

The film, premiering this week on Hulu, is a powerful testimony for disability marriage equality in its depiction of a loving relationship filled with warmth and laughter but limited by the harsh realities of money, ableism and politics. It’s also a shining portrait of the endlessly creative Jetter, told in a way that showcases her personality and echoes her own voice as an artist while sharing her painful journey to make that voice heard.

The ‘movie star’ crossing guard

Patrice Jetter, 60, works as a crossing guard in Hamilton.

It’s a job she’s well suited to, she says — she’s always been protecting children, even when she was a child.

Jetter, who was diagnosed with cerebral palsy as a child and uses a cane, had trouble making friends her age when she was young. So she became friends with younger kids. If anyone wanted to pick on them, they had to answer to her.

In the film, billed as a “documentary romantic comedy,” Jetter’s life story is told in play-like flashbacks where she portrays herself at various ages alongside a cast of child actors.

Because of the movie, which premiered in September at the Toronto International Film Festival, people in Hamilton have been calling her “movie star crossing guard,” she tells NJ Advance Media.

Jetter sat down for an interview with Wickham and director Ted Passon ahead of the film’s debut on Hulu.

She’s excited about the potential of the movie to bring the issue of disability marriage equality into people’s homes.

“I think the film has more impact because more people will be able to see it than just trying to just go to (government) representatives and talk, where it’s a relatively small group,” Jetter says. “We’re going to reach a wide audience.”

When Jetter and Wickham meet with government officials in the film, they’re told the issue of disabled people (people with disabilities) losing benefits through marriage is all about money.

“I guess what makes sense to people in politics doesn’t make sense to the rest of us, because they think that they’re saving money,” Jetter says. “If a person gets married who gets SSI (Supplemental Security Income), it’s a cost saving to them (to cut the benefits of the married person), but it’s gonna end up costing more money if you cut people, and then they have to apply for more public assistance to compensate for that loss.”

Jetter is the aunt of singer-songwriter Kimya Dawson from the band The Moldy Peaches (whose song “Anyone Else But You” was featured in the 2007 Oscar-winning movie “Juno”). She met Passon, the director of the Hulu film, through Dawson more than 20 years ago.

“We’ve just been friends ever since,” Jetter says. “Ted’s an artist and creative minds just unite.”

Passon always wanted to film Jetter.

“The first time you see her walk into a room, you just immediately want to know more about her and who she is and I just kind of fell in love with her right away,” says the director, who lives in Philadelphia and grew up in Haddon Heights.

Before “Patrice: The Movie,” Passon directed a seven-minute segment for the Netflix docuseries “Worn Stories” that featured Jetter.

“It showed that one, Patrice is very comfortable on camera, which wasn’t a surprise … and then two … she was by far the most popular person in the whole series,” he says.

Passon, 43, saw a way to tell Jetter’s larger story when she and Wickham wanted to get married and couldn’t. (The creator of “Worn Stories,” Emily Spivack, joined “Patrice: The Movie” as a producer.)

“Before that, it was like, ‘how do you just make a film about just the fact that someone’s awesome?'” he says.

But the director does that too, reveling in the sheer burst of creativity that is Patrice’s world.

Her home is like a wonderland of imagination. It’s where Jetter works on PTown, an intricate model train community and miniature amusement park that she has been building for 20 years. Jetter learned the ins and outs of how to use a soldering iron and splice a wire as a member of the Jersey Valley Model Railroad Club in Hamilton.

Inspired by Palisades Amusement Park, PTown is what she calls her escape from reality.

There, “everything is happy and fun and the way I like it,” Jetter says in the film.

Living on the edge of fear

Spending time in a miniature world of her own making gives Jetter comfort in the face of some very uncomfortable truths.

She is often afraid — afraid that she’ll lose everything if she loses her benefits and the necessities that keep her life afloat.

That fear becomes reality in the film when the wheelchair-accessible van that Jetter drives (and has just paid off) fails to pass inspection. As the vehicle is towed away, it’s hard not to feel the staggering weight of that loss, like everything she’s built is being towed away, too.

So much of Jetter’s independence depends on her ability to drive the van. It’s her transportation to work, and it’s how she travels with Wickham, 58, who has cerebral palsy and uses a wheelchair.

And she simply does not have the means to replace it. Accessible vans can cost upwards of $70,000.

Even if Jetter’s budget was bigger, she isn’t allowed to have more than $2,000 in the bank. If she does, she loses her benefits. She says she feels like she’s on a hamster wheel and can’t get off.

Making things worse in the documentary is the fact that Jetter and Wickham plan to have a commitment ceremony in lieu of a wedding. With the cost of a new van hanging over their heads, the event suddenly feels like an unmanageable expense.

As for alternative transportation, Jetter can’t spend her entire paycheck using Uber to get to work, the closest bus stop is a mile away and some streets in town don’t have sidewalks.

Wickham, who is originally from Haledon and moved to Princeton five years ago, could use NJ Transit’s Access Link transportation service. But the rideshare has to be scheduled a day ahead of time and can’t be relied upon to get him anywhere at a specific time.

“You could be on a bus for two hours for a ride that would normally take 10 (minutes),” he tells NJ Advance Media.

“You can’t do anything spontaneous,” Jetter says.

In the film, she’s forced to temporarily leave her crossing guard job while she scrambles to find a solution.

At first, she works with a friend, Elizabeth Dicker, to collect aluminum cans in a bid to raise money for a new van. But they soon realize all the effort isn’t paying off, and Dicker, who has autism and sensory issues, is no fan of the cans.

Another problem is that the last time Jetter launched a GoFundme campaign for a van, the money she raised was counted as income and she lost her benefits as a result. To prevent that from happening again, she connects with Help Hope Live, a nonprofit and fundraising platform that can arrange for the purchase of a van without the money touching her hands.

Because underneath all the everyday anxieties is another — Jetter fears going back to a state institution.

In the ’80s, she lived in one for more than two years. When she was able to get a housing voucher and live on her own, she was elated, “having ice cream at 4:30 a.m. just because I could,” she says in the movie.

Losing the means of supporting herself means losing her independence.

Jetter once worked at a sheltered workshop — “something like a sweatshop for disabled people,” she says in the film — where she made anywhere from 77 cents to $30 gluing tips on the poles of mini American flags.

Being a crossing guard is a job that Jetter had to fight for, applying, reapplying and reapplying again before telling the mayor she was being treated unfairly. (Before living and working in Hamilton, she had the same job in Montclair.)

Her life as a play

As the Jetter’s story unfolds in the present, each chapter of her past is woven into the narrative through flashback scenes.

Child actors star alongside Patrice — as Garry, her mother and other characters who have hurt and helped her on her path to where she is now.

At first, Jetter’s mother sent her to school without disclosing her disability. Then the school forced her to wear a harness and leash.

“I wasn’t aware that I had a disability until the other kids treated me different,” she says in the film — making fun of her and making her the target of physical attacks.

Later, she was put in a group home that was more like juvenile detention. When she told her mother about what it was like, she was allowed to return to school, where she became a special education student.

“The film needs to feel like it is part of Patrice’s aesthetic and it needs to feel like it is in line with her artwork and her style,” Passon says.

So the movie uses Jetter’s own illustrations to tell her story.

“We kind of realized quickly it would look like a play, it would kind of have that vibe if we did sets that were just made out of her drawings,” Passon says.

The combination of these visuals with the child actors evokes the feel of Jetter’s role as a protector of children and her other related passion — “The Trish Show,” the children’s television show she hosted for years on Montclair’s local access channel 34.

Passon, who co-created and directed the Peabody Award-winning docuseries “Philly D.A.,” which aired on PBS in 2021, has also worked in children’s TV.

But he had a reason beyond aesthetics for why he wanted to tell Jetter’s story this way.

“Patrice, when she’s talking about her life, she always has a way to find the humor in it, even when she’s telling you something really dark,” Passon says.

Among those dark moments is when Jetter recounts being detained by police after an argument with her mother and put in a facility where she says staff sexually and physically abused her and her friends.

“We realized that using kids (as actors) could also help convey the stories in that same way as Patrice would tell them,” Passon says. “It could soften them. It could find some humor that you wouldn’t expect to be there … We also realized that the kids would also provide a gut punch in a way that you wouldn’t get otherwise, because some of these things you’re hearing out of the mouths of children … they actually kind of lay bare a little bit more so how awful some of the systems are.”

Together, apart

“Patrice: The Movie” starts with Jetter and Wickham performing their ice skating pairs routine for the Special Olympics.

Jetter works at Hamilton’s Ice Land Skating Center one day a week. While she has mobility issues, she has more control on the ice.

“When I’m out there, I can actually balance and glide around,” Jetter tells NJ Advance Media. “And I feel a sense of freedom that I don’t need my cane out there, and just for a little while, I feel like a regular person. But then it’s funny because I can be outside at work or at the supermarket and just for no reason, I can trip and fall standing still. Go figure.”

The film also shows Jetter and Wickham in a pool, a place where he can get a break from gravity.

He uses a wheelchair in the film but is in physical therapy trying to walk again.

“Being in the water gives me the freedom of being able to walk because the water holds my weight up,” Wickham tells NJ Advance Media. “I learned that years ago when I was a kid because my family put a pool in our backyard and tossed me in the water and they’re like ‘let go of the side. The water’s gonna hold you up.’ And once I realized that the water held me up, it was a freedom I had never felt before.”

Jetter and Wickham feel they are better together, but staying apart means they can keep their benefits.

Sometimes, that can make their relationship seem like a long-distance one, even though they live just towns apart. If they had their way, they would be married by now.

“They punish you for feeling feelings that everybody else feels, and it’s like ‘oh, you’re disabled, you’re not everybody else,'” Wickham says in the film.

It’s hard not to think about what daily life could be if they lived in the same place.

“I definitely wouldn’t have to worry about being lonely or being alone,” Jetter tells NJ Advance Media. “Or that if I got sick … somebody is here with me, that they could call 911, or call somebody.”

Wickham shares that thought, along with issues of finances and travel.

“For me, it’s going back and forth, having to maintain another apartment and pay all the bills on my own instead of being able to share the bills,” he says.

And they can’t ignore the system, as tempting as that might be. They’ve been burned before, even when they weren’t doing anything wrong.

“In the Social Security system, anybody can report anybody for a violation,” Passon says. “And so you can never know if some other shoe is gonna drop. It’s a maddening way to live when you’re already on the edge.”

Jetter was volunteering at an after-school program when the mother of a child who worked at the Social Security office got the impression that she was being paid for the work.

“I ended up getting in trouble until they found out that I wasn’t a paid employee, that I was a volunteer,” she says. “But it was still very upsetting.”

Still, Jetter and Wickham carry on, jumping at the chance to be advocates for marriage equality.

They march for the cause and head to Washington, D.C. in the film, where Jetter presides over a “marriage” ceremony for people with disabilities who are unable to get married for the same reasons.

“We had people that came as far as California to be there,” she says.

It wasn’t a commitment ceremony, but a spotlight on the rights that so many people have and they don’t — not if they want to be able to afford medicine, health care and living expenses.

“We want to make change,” Wickham says. “But we still also just want to be us.”

“Patrice: The Movie” is streaming on Hulu.

© 2024 Advance Local Media LLC
Distributed by Tribune Content Agency, LLC

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