For 20 years and three months, Jo Ann Spencer has taken care of her twin sons, Spencer and Benjamin Smith, feeding them, bathing them, changing their clothes and bedding, nurturing their minds and spirits, loving them, with never a question of her devotion, nor a complaint about her circumstance.
But their lives are hard, and getting harder.
Spencer and Benjamin were born Sept. 24, 1990, with cerebral palsy. They are wheelchair-bound, incontinent, unable to make a simple sandwich, unable to move their now man-sized bodies beyond their Catalina home, an expanded double-wide of unfinished walls and floors, a place so filled with stuff by the boys’ father, Michael, that there are paths through rooms rather than spaces in which to live.
Michael has lost his job. Jo Ann works part time, and can’t afford to get an adequate vehicle running. At the very least, the house is in real disarray. Jo Ann has no health insurance, and she’s developed the sorts of ailments that come with age, and when a mother’s energy is invested completely in her children, big, needy children.
“I have never actually heard Jo Ann complain,” says her friend Rae Anne Sulzbach, who met Jo Ann as a fellow volunteer Master Gardener. “She just doesn’t do that.”
“I have a roof, friends, boys who love me to death, a job, three meals,” Jo Ann said. “I’m a fortunate person. We don’t have a lot of money, but we eat well. I know there are people worse off than me.”
But, she acknowledges, “I’m in need of some assistance. … I need a nice place to live, that’s safe. I want a vehicle that’s reliable. I need a house that’s reliable.”
Spencer and Benjamin shared blood vessels in the womb. Spencer got nearly all Jo Ann’s amniotic fluid. Benjamin was crowded. They were born 7-1/2 weeks early. Spencer weighed 4 pounds, 3 ounces, Ben 3 pounds, 4 ounces. His kidneys did not work; he received one of Michael’s kidneys at the age of 18 months.
“When these guys were born, it was a little freaky,” Jo Ann said. “Nobody knew what to tell me when these guys were born.”
Her doctor apologized. “They’ve just got so much happening,” he said.
There was speculation the boys would be “vegetables.”
“Vegetables,” Spencer scoffed.
“They have an extremely good vocabulary, and the school tells me that’s my fault,” Jo Ann said.
“We’re genius,” Ben said.
“He’s a Rhodes scholar, he just can’t make a peanut butter and jelly sandwich,” Jo Ann said.
While their mother talks, the boys listen, and occasionally comment. Spencer, the more chatty, talks about donating boxes of Depends, and clothing they’ve outgrown, to other people. “We like to give it back to them,” he said. “I’m a very nice man.”
“They have a great personality, they’re very happy kids,” Jo Ann said. “I am as lucky as lucky can be. In the end, it doesn’t matter how much money you’ve got, it’s the quality of life you have.”
Transporting Spencer and Benjamin “has become a real difficult issue,” Sulzbach said.
“They grew,” Jo Ann said. Their physical limitations mean they can’t do a lot to help get around. And there’s not money to get another vehicle running.
“I can’t take Spencer anywhere myself,” she said. “Ben, with a whole lot of my support, I can get him into my truck.” When Michael is around, he can help get them into a vehicle.
“I love these guys to death,” Jo Ann said. “I feel like I’ve failed them. I can’t buy a vehicle to transport them. They’re stuck here.”
She cries, but just a little.
There’s a birthday party coming up. “But how will we get there?” Ben asked.
Jo Ann has been told an adaptive car, allowing her to get both sons in with wheelchairs, would cost $60,000. “I don’t have $60,000.”
They live on her part-time wage, and the boys’ Social Security disability.
“I feel like I should be able to take care of my kids, financially,” she said. “We eke through. We pay our bills. It’s not cushy living on Social Security.”
“The Lord just laid Jo Ann and her family on my heart,” said Sulzbach, who’s tried many different avenues to bring attention and help to them. “I feel like I need to do something. They have lots of needs, obviously, and not just the van.”
Jo Ann, Spencer, Benjamin and Michael have been on the Catalina property since 1984, and started this house in ’92. It was originally a double-wide mobile home, now with additions. There are walls, but not wallboard. There is no insulation; it’s cold in the winter, hot in the summer, worse when monsoon’s humidity rises. The roof leaked. The floors are weathered plywood, with some sporadic carpeting.
Michael is a hoarder. Because of his proclivity for collecting everything, everything is all over the house. Paths wind through the assortment in each room. For a while there were no doors. Tarantulas found their way inside.
“We’ve lived like this forever,” Jo Ann said. “I think the only person that’s bothered by the way we live is me.
“I don’t go ’round telling people how bad I live,” Jo Ann said. “I don’t invite people out, because I’m embarrassed. It’s just embarrassing.”
Michael starts working to improve it, but can’t finish. “This is a pretty overwhelming project,” Jo Ann said.
“Michael’s got lots of issues,” Jo Ann said. He’s had a brain injury. She says he is bi-polar. She pays his bills with his money. He’s lost his job.
“If it were easy for me to throw him out, I wouldn’t be the person I am,” she said. “He gave a kidney to my son.” But, she sighs, “I have to take care of him, too.”
Jo Ann believes she should be “moving my boys into town,” adding quickly she doesn’t have the money, and the Catalina property would have to sell, and …
“There’s all these Catch-22s,” Jo Ann said. “I love it here. I’d stay forever. But it’s not really going to help these guys. It would be lucky if something could happen to the house, but transportation, that’s the big thing for me.”
Point to a body part on Benjamin and Spencer, and it’s been affected by cerebral palsy. Between the two of them, they’ve had an operation “probably every year of their life.” Eyes, several times. Feet. Legs. Knees. Backs. Both have had scoliosis, with resulting surgery and long hospitalizations. Teeth. Hips. Hernias. Adenoids. Tonsils. Hospitalizations are often lengthy, because of their complications.
“Ben’s got a zipper down the front, and down the back,” Jo Ann said.
“Should we tell the 911 story yet?” Spencer asks.
She does. Spencer fell. He’s a big man, more than 200 pounds of heavy mass. It took four emergency responders to get him up. Before leaving, the men asked if they could do anything else. “What are you doing at 6:30 every morning?” Jo Ann asked.
“This is a high-stress job, being the parent of kids who are medically impaired like this,” she said.
Through it all, amidst it all, there is humor and laughter. Benjamin and Spencer used to play tennis at the El Conquistador, where Spencer picked up the nickname “Spencer Sampras,” “because of the grunt,” he said.
“This family’s incredible sense of humor has helped them weather some very rough situations,” Sulzbach said. “They are truly a walking model of ‘laughter is the best medicine.’”
Benjamin and Spencer are “the reason I get up in the morning,” Jo Ann said.
On a typical day, she rises at 5 a.m., gets herself going, rousing the boys between 5:30 and 5:45. It takes nearly an hour to get them dressed and out of bed. Breakfast and medications follow, about 6:30. She changes the beds, does laundry and straightens up around the house. “’Straightened up’ being a relative term,” Jo Ann quips.
Spencer and Benjamin ride a bus to and from Ironwood Ridge High School each day. Ben likes science. Spencer prefers math. They’ll go to school until they turn 22. In the summer, they take part in programs at the Jewish Community Center.
After the school bus comes, Jo Ann goes to work.
“For years,” Jo Ann says, “I couldn’t work at a good-paying job.” She is a trained teacher. But “the boys’ needs were so much.”
Today, Jo Ann works 30 hours a week for $8 an hour, about $960 a month, for Pilot Parents of Southern Arizona, a support group for siblings of children with disabilities. Spencer and Benjamin receive monthly Social Security disability payments. They have access to services, and utilize some of them.
An attendant, Luis Medina, is home when the boys arrive from school. He’ll help them shower — “Call the pee-eww police,” Ben said. “Call the EPA.” — and with homework, and Luis cuts their toe nails. “I can’t get down there anymore,” Jo Ann said.
“He’s wonderful,” Jo Ann said of Luis, who is paid through United Cerebral Palsy. “He treats them with dignity and respect.”
“You’d be amazed at what you could do,” Jo Ann said of their lives. “You could do it, if you have to. We all have trials, we all have bad things that happen to us. This is not a bad thing, it’s just extra work.
“I don’t think I’m doing anything extraordinary, I really don’t.”
And yet the exhausted frustration remains.
“I can’t do anything to make my life, and their lives, better,” Jo Ann said. “The three of us have got to live better than this, but I don’t know how to fix it.”
How to help
An account has been set up for the family of Jo Ann Spencer, Spencer, Benjamin and Michael Smith.
It is at Bank of the West, in the name of New Life Bible Fellowship for the Jo Ann Spencer Family.