‘SO MUCH LOVE’
Disabled Santa Fe man who’s made connections across community despite inability to speak facing terminal cancer
In the first year of Matthew Allen’s life, his parents were told he likely would be a “vegetable” and end up in an institution.
Instead, he became a Santa Fe institution.
Allen, who was born developmentally disabled, has been walking the city’s streets with family members for decades — and has been a magnet for attention and a source of strangers’ smiles, said parents Angie and Jim Allen. That has changed recently as his activity level has plummeted, the sad result of a terminal cancer diagnosis in 2019.
“It appears to me like we’re very close” to the end, Jim Allen said Thursday at the family’s home while Matthew lay in bed. Matthew, 57, has colorectal cancer.
Angie and Jim Allen wanted residents to know why they won’t be seeing him dancing to music on the Plaza or visiting parks.
“People are attracted to him. Homeless people will come to him,” Jim Allen said. “They like him. People from all over. … I guess they see hope, maybe something they lack. People will approach when we’re talking in the park and ask, ‘Mind if I walk with you?’ ”
The family never minds, and the result has been face time with a cross-section of friendly Santa Feans and visitors who, had Matthew not drawn their attention, likely would have kept walking without a glance. Matthew has a distinctive gait, his father said, because of problems with the arches in his feet.
“I’ve always been a people person, but I didn’t know that there was so much love and so much kindness until I started walking Matthew,” Angie Allen said, her voice breaking. “That’s when I saw that people want to help. Sometimes people get scared because they
don’t know if they should approach. They don’t know, but … a lot of them did.”
At the beginning, the walks were around the block. Family members ventured progressively farther away with Matthew, eventually heading downtown.
That’s where Matthew’s love for the universal language of music became apparent — via his dancing.
Matthew has two siblings, Yvonne Schwartz and Gilbert Allen, both in Santa Fe. Schwartz said Matthew doesn’t just bring strangers together.
“If Matthew did not have the disability he has, it would have been very different for our family,” she said. “We probably would have been very disconnected. He’s shown me a different part of life. Living life through him has humbled me, has given me patience and understanding.”
Although he’s nonverbal, Matthew emotes plenty, his mother said. She said she feels especially bonded with him when he smiles.
“I can actually communicate with him,” she said. “You can see it. He does understand a lot of words. He couldn’t talk, but it’s all in there. You think he doesn’t know, and you’ll say something and he’ll look at you and you know he understood. He has a number of expressions.”
The Allens acknowledged fearing the void they face after about six decades of near-constant care for Matthew.
“He doesn’t get out as much as he used to,” Angie Allen said. “It’s very quiet. Yesterday he slept all day, and Jim and I were just going from room to room and … we don’t know what’s going to happen when he’s gone. Without this, I don’t know what we’re going to do.”
It pains Matthew’s parents to see him nearing the end of a life spent defying dire medical predictions.
A neurologist told the Allens after Matthew was born that Matthew couldn’t see or hear. The child’s reactions to stimuli in the following months and years proved that was incorrect, Angie Allen said.
“My husband asked, ‘Is he gonna be all right?’ and the doctor said he’ll never drive a car. And that was it,” she said, underscoring the couple’s frustration about the poor understanding of special needs around the time Matthew was born in July 1964.
“The first breath he took, he lacked oxygen and suffered a hematoma,” Jim Allen said. “Basically, they were telling us … there was one neurosurgeon in the entire state.”
The family was told the surgeon could operate, but Matthew wouldn’t survive. After he gained some weight, he had the surgery at 11 months old; afterward, the family was told Matthew would be bedridden for life, unable to lift his head, Jim Allen said.
While that, too, proved incorrect, Matthew’s early years were pain-filled. For a few years, Angie Allen said, he had fluid removed from his brain daily via a needle, and he took powerful medications to treat seizures.
The Allens are strong advocates for securing more resources for people with developmental disabilities, and they said that while the need remains, they’ve seen plenty of progress.
“There’s a lot of physical, occupational, speech therapy … there’s a lot [now],” Angie Allen said, adding even things like small wheelchairs weren’t available in 1964.
“At the time when he was born, I don’t think even the doctors were familiar with it. One doctor told me, ‘I don’t know what to do, and the best thing
I can offer you is information for Los Lunas, an institution.’ ”
In their kitchen, the Allens shuddered as they contemplated that option from decades ago. In 1987, a high-profile lawsuit was filed in part over conditions at that facility, known as Los Lunas Hospital and Training School, leading to years of court battles and disturbing revelations of poor treatment of residents. It closed in 1997.
That’s the year Matthew, then 32, showed up at the Legislature to silently urge action on a backlog of New Mexicans awaiting services. According to a story on the front page of The New Mexican in early 1997 — one of several times he has been featured in the newspaper — Matthew was one of about 1,800 people in a long, slow-moving line for services under a Medicaid program for the developmentally disabled run by the state Health Department. He was on that list for more than a decade, his father said.
Matthew’s godmother, Tessie Lopez, said her daughter, Patty Tapia, was inspired by her interactions with Matthew while growing up and now serves as a nurse for people with disabilities. She lives in Rio Rancho.
Lopez knows Angie Allen from their childhood, when both lived on Canyon Road. They’re still neighbors, Lopez said.
“He loves being alive,” she said of Matthew.
The Allens said they didn’t consider chemotherapy as an option to treat Matthew’s Stage 4 cancer — that it would bring too much stress and pain.
“I think God’s calling him home,” Jim Allen said. “His job is done.”
Amid such challenges and recent heartache, Jim Allen said his faith in God has only strengthened.
The walks with Matthew similarly bolstered Angie Allen’s faith in humanity.
“People can be very kind,” she said.
“If Matthew did not have the disability he has, it would have been very different for our family. We probably would have been very disconnected. He’s shown me a different part of life. Living life through him has humbled me, has given me patience and understanding.”
Yvonne Schwartz, Matthew Allen’s sister