While we're talking about equality, there's a group among us which deserves a boisterous voice | NFK Dreams with Jesse Scaccia
This week I met another 38-year-old Jesse who calls Norfolk home.
In my time with him I found that Jesse Monroe’s defining characteristic is gratitude. He offered the most sincere and present thanks every time someone helped him, which ends up being a lot in his situation.
Jesse has arthrogryposis, a condition that does not allow him to use his arms or legs, though he should not be defined by that.
“I love history and politics,” said Jesse, who has lived in Hampton Roads his whole life. “As a kid I used to love the Civil War.”
Too often in our society we judge people by what we see as being “wrong” with them. While Jesse was not graced with the ideal limbs, there is nothing wrong with the parts of him that are most important: his spirit and his heart.
He is whole, and thanks to Hope House, he is independent.
“It’s Jesse’s life,” said Dottie Cuccaro, a team leader for Hope House, which serves 122 people in Hampton Roads, 93 of them in Norfolk.
“He should be able to live it how he wants to.”
Jesse lives in a regular apartment complex in Ocean View, surrounded by a mix of everyday citizens and other folks that Hope House works with. That’s their model: don’t put those with developmental disadvantages in group homes, but facilitate their independence – and integration in society – through life in houses or apartments, just like the ones you and I live in.
Well, they’re a little different. In Jesse’s case, his apartment is outfitted with Google technology that allows him to verbally command things like the door to open, or the television to turn on.
“We’re the only organization in the state who provides services exclusively at home,” said Elena Montello, development director for Hope Hope. “A (group) home does not make a life. Here they get to live as an individual. They can live their life.”
Which means that rather than being dragged along with a group of individuals with different complications and tastes, Jesse can forge his own path. He goes to church in Chesapeake. He loves Mountain Dew. He is one of us.
“We’ve got to talk to each other more,” Jesse said, when asked about the current state of politics. “(God put us here) to help each other, to learn from our mistakes.”
Someone from the Hope House team made a really important point I want to share. As our culture talks about equality, acceptance and fighting for the under-represented, rarely do we talk about those with developmental disadvantages.
Right now in Virginia there are 11,000 people like Jesse on the waiting list for services, according to Montello. Those 11,000 Virginians deserve better.
And not just in services. They deserve our love. They deserve to be judged for the wholeness of their souls.
They deserve our voices, speaking loudly for them in this day and age where funding for the services they need to be independent are ever more at risk.
“We are the last group to have a voice,” said Montello, who beams with pride as she talks about how Hope House, a non-profit, provides services at a fraction of what the state pays.
“We want people to know there’s a group here that deserves to have a voice – a boisterous voice.”
It is only by the luck of the genetic draw that Jesse Monroe is in a wheelchair, and this Jesse, here writing, has the use of all his limbs.
And I am one catastrophic car accident from being right there with him – that is, if I am lucky. Or, on a waiting list for services.
“When you get down to the nitty gritty, we all have a disability and need support,” said Montello. “Nobody can function alone.”
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