Whenever Jalil Frazier opened his eyes, he found himself on an island barely wide enough to contain his frame, boxed in on both sides by unforgiving metal bars. A familiar landscape surrounded him: four bare walls, a beige tile floor, and a tiered chandelier that hung above what used to be his family dining room.
He was stuck on this uncomfortable hospital bed because he’d had the misfortune of being inside a North Philadelphia barbershop on an unseasonably warm January night at the same moment two men barged in, looking to rob the place.
Frazier, whose round face is framed by a scraggly beard and short dark hair, glanced at three children who happened to be in the shop. He was a father, with two kids at home, and felt an instinctive urge to protect them. He hurled himself at the would-be thieves. One had a handgun, and fired two shots. The bullets punched through Frazier’s midsection and leg, ricocheting off his insides, tearing through tissue and bone before exiting his body.
At age 28, he was paralyzed from the waist down.
Frazier was a hero by anyone’s definition of the word, but he was also a victim, one of the estimated 116,255 people who are shot in the U.S. every year. He belongs to an often-overlooked fraternity of gun-violence survivors who are left with lifelong disabilities, whose ranks include schoolchildren, movie-theater patrons, politicians, and grandmothers.
Several thousand miles from Philadelphia, Richard Castaldo, 37, sits in a wheelchair in Los Angeles, trapped in a pose he’s held since April 20, 1999, when he was shot eight times and paralyzed by his classmates Eric Harris and Dylan Klebold outside of the cafeteria at Columbine High School in Colorado. Harris and Klebold killed 13 people and wounded 21 others that spring morning, ushering in an age of relentless mass shootings in America.
The price tag of our gun-violence epidemic is staggering. Between 2006 and 2014, patients suffering from gunshot wounds incurred $6.6 billion in hospital costs, according to the Brady Campaign to Prevent Gun Violence. More than a third of those bills were paid by taxpayers, in the form of Medicaid. In Philadelphia, where more than 1,250 people have been shot so far this year — up 15 percent over 2017 — survivors face an average of $46,632 in medical costs, according to the Department of Public Health.
But as Castaldo — and Frazier — found out, hospital bills are just a small portion of the financial burden that’s shouldered by survivors, no matter if they’re injured in a nationally prominent mass shooting or a spurt of inner-city violence that attracts only glancing media attention. Many struggle to navigate a confusing web of local, state, and federal assistance programs, which are plagued by steep backlogs and in some cases can award as little as $1,500 to victims whose injuries require expensive lifelong care. Some, in their desperation, turn to Kickstarter or GoFundMe campaigns to help them obtain such basic needs as handicapped-accessible housing, transportation, and even functional wheelchairs.
Castaldo has had visibility that victims of inner-city gun violence like Frazier could never dream of — he met former President Bill Clinton, and received a portion of the $6 million that donors gave to Columbine charities after the school massacre. But like so many gunshot victims, he still struggles to make ends meet, and almost lost his condominium in California to foreclosure in 2012. In December, he will finally move into a handicapped-accessible apartment that he and his mother have sought for years.
Frazier, meanwhile, has pined for freedoms that seem well beyond his family’s grasp, like a house large enough for him to move through in his wheelchair. Much of his energy has been spent on trying to keep his head above the waves of a depression that threatens to pull him down into the darkness.
“No other country has this level of gun violence, or the cost shifted to individuals for treatment of the wounds they suffered as a result of that gun violence,” said Kris Brown, copresident of the Brady Campaign. “It’s unconscionable.”
The invisible victims
We are, at this point, well-versed in the art of responding to shootings that claim innocent lives. The initial shock gives way to hashtags, candlelit vigils, and vows to never forget. Disabled survivors are a footnote in this ritual, their struggles largely unseen, except by people like James Schuster, a neurotrauma director at the Hospital of the University of Pennsylvania.
Trim, with a shock of white hair and the remnants of a South Dakota accent, Schuster focuses in particular on patients with spinal cord injuries. According to his records, HUP has handled at least 85 gunshot paralysis cases since 2012. But determining how many other people across Philadelphia have been shot and paralyzed in that time frame is, surprisingly, almost impossible. None of the city’s other top hospitals — Temple, Einstein, Jefferson, and Hahnemann — were able to provide the Inquirer and Daily News with the number of gunshot paralysis cases they have had, because they don’t specifically categorize or track this type of injury.
The National Spinal Cord Injury Statistical Center estimates as many as 45,000 Americans — the capacity, basically, of Citizens Bank Park — have been paralyzed from gunshot wounds.
“In a way,” Schuster said, “it’s almost a little bit of an orphaned subset.”
There could have been more extensive data on these victims today if things had played out differently in Washington in the mid-1990s. Around that time, the National Rifle Association began claiming the Centers for Disease Control and Prevention was producing “antigun propaganda” in the form of a study that examined firearm-related deaths. Congressional Republicans responded in 1996 by eliminating $2.6 million worth of funding that the agency used for its research related to gun violence.
Republican lawmakers also added the “Dickey Amendment,” named after then-Rep. Jay Dickey, into the CDC’s annual appropriations budget, which prohibited the agency from using any funding to advocate for gun control, bringing gun-violence research to a near standstill. (Dickey, an Arkansas Republican, later admitted that he regretted the amendment and called for research to be renewed.)
Earlier this year, Sen. Bob Casey (D., Pa.) and 33 other senators asked the Senate Appropriations Committee to set aside $50 million for the CDC to begin studying the causes of gun violence in America. “What a radical thing to do, right?” Casey said during an interview in his Center City office. “I would think there should be some way to gather data that would give you an approximation of how many people you’re talking about.”
His funding request was ignored by the Appropriations Committee.
In the meantime, clinical medical trials and research foundations tend to overlook gunshot paralysis victims, because they have other medical complications from being shot. “It has to do with ballistics, with the transfer of energy,” Schuster explained. “Even if the bullet doesn’t actually go through the spinal cord or the spinal canal, there’s a blast effect, there’s a percussive effect. The injuries are much worse than they appear.”
Some of Schuster’s patients end up at Magee Rehabilitation Hospital, where Mary Schmidt, the spinal cord injury program director, prepares survivors and their families for the maladies that can arise from paralysis: bowel and bladder issues, pressure ulcers, urinary tract infections, chronic respiratory problems.
The spinal cord can’t regenerate, but many of Schmidt’s patients struggle to accept the permanence of their injury. “Every day, people come in here and say, ‘I don’t need to talk about that wheelchair, because I’m going to walk out of here,’ ” she said.
When survivors are ready to talk resources, they’re greeted with another harsh shock. If they don’t have family members at home who can help to take care of them, they can face being stuck in a nursing home. If they do have a place to stay, they have to grapple with a bureaucratic scavenger hunt for resources.
Medicaid, which congressional Republicans have targeted for steep cuts, will cover the cost of a wheelchair, Schmidt said, but would balk at replacing one if it breaks before a person is due to receive a new one. Assistive technologies, like voice-dictation systems for computers, can be life-changing for quadriplegics, “but no government system, no third-party payers — your Blue Crosses, your Aetnas — are buying that stuff, because it’s not medically necessary,” she said.
Funding for state and federal assistance programs, meanwhile, varies every year. Families often turn to GoFundMe pages to help fill the gap, but this, too, can be problematic; some recipients have found that donations are taxable.
“Disability awareness in general is definitely better than it used to be,” Schmidt said. “But is it easy for someone with a disability? No. And it’s never going to be for those people who are really intensely disabled.”
An endless search for aid
You have to go back 30 years to find a moment when gun violence still had the power to shock the conscience of a city. On a sticky July afternoon in 1988, a shootout between rival drug gangs erupted at 20th and Tasker Streets in South Philadelphia. One of the participants, a 21-year-old named Lonnie Summers, fired four shots at a passing car.
One of Summers’ bullets found an unintended target: 6-year-old Ralph Brooks Jr.
“I was running to my grandmom’s house,” Brooks would later tell a Common Pleas Court judge. “I got to my front door, and I fell down on my stomach and I couldn’t feel anything.”
His sister found him lying in a pool of blood. “Breathe!” one neighbor screamed at the boy. “Breathe!”
Brooks had been shot in the spine, and was instantly paralyzed from the chest down. Heartsick residents who followed news coverage of the story donated thousands of dollars to an education fund for the sweet-faced little boy, whose recollection of the shooting brought the judge and prosecutor presiding over Summers’ trial to tears. (Summers was sentenced in 1989 to 15 to 30 years in state prison. He was paroled in 2006, and sometimes communicates with Brooks, who lives on the West Coast.)
While Brooks remained a beloved figure in his neighborhood, where a playground was later named in his honor, his family struggled to meet his needs. His mother paid for a wheelchair ramp out of her own pocket, and relatives carried him in their arms from one floor of their house to another, until he became too big for them to lift.
“No one ever approached my family and informed us of various services that he was entitled to,” said Nashira Alston, one of Brooks’ sisters, a refrain that the Inquirer and Daily News found is still commonly uttered by relatives of gunshot paralysis victims in Philadelphia and across the country.
“He would go through wheelchairs very fast,” she said. “And yet there was a rule that you could only get a new wheelchair every five or so years.”
Pennsylvania has an Office for Victims of Crime, which is supposed to help with everything from funeral costs to recouping lost wages. In a recent year, the office denied nearly 100 applicants for not filing their paperwork on time or failing to cooperate with law enforcement, records show. The fund fields 8,600 claims a year, and pays out about $13 million — an average of $1,511 — with awards topping out at $35,000. The largest chunk of funding, more than $4 million, was spent on forensic exams for sexual-assault victims.
Even the biggest payments can amount to a drop in the bucket for gun-violence victims with permanent disabilities. Rodney Whitmore learned that firsthand after he was shot and paralyzed in South Philadelphia in 1995.
After two months at Magee and eight weeks of outpatient care, Whitmore, then 22, was sent home to a rowhouse that wasn’t remotely handicapped accessible. His family didn’t have the tens of thousands of dollars that it would have cost to remodel their home.
“Someone gave me a cushion, so I used that to slide down 15 steps in my house,” Whitmore recalled with a grimace, after wheeling into a Chinatown coffee shop. “I did that for five or six years.”
An employee at a rec center for people with disabilities eventually told Whitmore about the state Office of Vocational Rehabilitation, which has funding to perform badly needed renovation services for disabled residents. He reached out to the agency and applied. “You have to make sure you stress to them that you’re looking to work and do something with yourself,” he said.
OVR agreed to install a wheelchair lift outside Whitmore’s house and modify his bathroom in 2002 — two years after he submitted his application. Sometimes the lift breaks down, but Whitmore still has to get out of his house. On those days, he tilts his wheelchair backward, and in a nerve-racking feat of balance, grips the railing while he slowly slams down the concrete steps.
OVR served more than 70,000 Pennsylvanians in 2015, the most recent year for which it has data available online. The state also offers vouchers for home modifications through its Office of Long Term Living, but that process is managed by a for-profit company, Maximus, which advocates say takes months to review and process claims. The company declined an interview.
Philadelphia’s Housing Development Corp. has an Adaptive Modification Program that makes similar modifications to a disabled person’s property. But applicants have faced three- to five-year waiting lists for services, and the agency caps its improvements at $25,000. (City Council has committed to spending $100 million to erase the backlog for ADP and other housing programs.)
Government and nonprofit officials argue that there is plenty of assistance available — Philadelphia even has a Mayor’s Office for People with Disabilities — but more than a dozen paralyzed gunshot survivors the Inquirer and Daily News interviewed said they were unaware of many of the programs that are cited.
Nancy Salandra, the director of independent living services at Liberty Resources Inc., a local nonprofit that advocates for and assists people with disabilities, noted that no standard policy governs how agencies respond to people who find themselves paralyzed from some horrific twist of fate. “Every state is different,” she said. “It’s all piecemeal.”
In Philadelphia, where the poverty rate remains stubbornly stuck at 26 percent, gun-violence survivors resort to improvised solutions. Some save up what little money they can, and enlist handymen like Ty Shoemake — himself a gunshot paralysis victim who attained viral fame thanks to videos of him doing pull-ups in his wheelchair — to cobble together makeshift hand controls, made of discarded pipes and crutches, so they can still use their cars.
Others find themselves on the receiving end of unexpected kindness.
On Feb. 15 — a day after the Parkland, Fla., high school shooting — Troy Harris felt the seams of his world tear apart when he learned his son Azir had been shot five times while walking to a store with some friends in South Philadelphia.
At 17, Azir was paralyzed. “My soul,” Harris said, “left me.”
Harris is a chef at the University of Pennsylvania’s Hillel Falk Dining Commons, where he is adored by students, and his wife, Debra, worked at a rehabilitative nursing home. The couple have four other children, and quickly burned through whatever personal and sick days they had to be with their son, who lay unconscious in a hospital for three weeks after the shooting.
Penn students who knew Harris from the dining hall banded together and raised $20,000 to help him with his son’s medical expenses. It was a touching gesture. But everyone involved knew the money would cover only a tiny fraction of Azir’s medical needs, which will be constant and ever-growing. Harris and his wife don’t know how they’ll solve that puzzle.
They live, for now, in a Philadelphia Housing Authority building that isn’t handicapped accessible, forcing them to repeat the same motions that Ralph Brooks’ family made 30 years ago, carrying their boy from one room to another, until he grows too heavy for their arms.
‘What does our government owe?’
Survivors of mass shootings that received round-the-clock media attention have learned that charitable donations are an imperfect way to address medical debt, and that they, too, must scramble for resources and guidance.
Joshua Nowlan, a Navy veteran, was watching a screening of The Dark Knight Rises in an Aurora, Colo., movie theater on July 20, 2012, when a gunman opened fire on the audience. Nowlan used his body to shield his friend’s wife, and was shot in the leg and arm; a dozen people were killed, and 58 more were wounded.
Nowlan was hailed as a hero, but left with unrelenting pain in his left leg from the bullet damage. Last year, his doctors recommended that Nowlan have the leg amputated. It was another bit of trauma in the 37-year-old’s life, but what proved to be even more troubling was that his friends had to start a GoFundMe to help cover the costs of his medical expenses.
“This is hard for me to ask for help,” Nowlan wrote on his Facebook page, “but this will [be] another huge challenge in my life and every little thing will help me recover.”
Camille Biros has worked with Washington-based attorney Kenneth Feinberg to mediate settlement agreements for survivors and relatives of victims of the most infamous mass casualty events in recent history, including 9/11, the Boston Marathon bombing, and the Pulse nightclub shooting in Orlando, Fla.
“At the end of the day, these individuals don’t get anywhere near the amount of money they need to cover their medical expenses throughout the rest of their lives,” Biros said during a recent interview. “We come up with an allocation that’s fair and reasonable, considering the amount of money that’s collected. In Boston, they raised $62 million, compared to $6 million for Aurora.”
Connie Michalik, Richard Castaldo’s mother, said her family spent much of the donations they received after the Columbine massacre on his ever-evolving needs. “You don’t think that your child is going to get shot or hurt or injured, and then you’re thrown out in the cold,” she said.
Medi-Cal, the Medicaid program offered in California, recently denied Castaldo’s requests for quality-of-life equipment, Michalik said, such as a $3,500 commode chair and a $1,500 wheelchair cushion that he needed because of an ulcer that developed on his backside. She and Castaldo’s 82-year-old grandmother had to buy them.
“There should be more resources, because a lot of these people that were shot in these mass shootings, it wasn’t their fault,” Michalik said.
Jami Amo, a Columbine survivor who lives in Montgomery County, has a more pointed question: Why isn’t there a national clearinghouse that gun-violence survivors could consult to find all of the resources — state, local, and federal — they could be entitled to, with a clear explanation of how to navigate the application processes?
Casey, who was recently elected to his third term as senator, believes there could be bipartisan interest in creating the database that Amo envisions, as long as it doesn’t require new funding. “I mean, at the core of it,” he said, “it’s ‘What does our government owe to someone with a disability?’ ”
His Republican counterpart, Sen. Pat Toomey, said the idea “makes a lot of sense.” The Department of Justice already shares information about funding, he noted, but informing victims that they might qualify for Medicaid or other resources is “probably an improvement that could be worked into the system.”
(The federal Office for Victims of Crime does collect some information about services available in Pennsylvania, but it is incomplete.)
Toomey is one of the few Republican senators who have staked out a position resembling a middle ground on gun-violence issues. Earlier this year, he introduced, for a third time, a bill to expand background checks for gun purchases to include online sales and transactions at gun shows. It previously failed to clear the Senate, even in the aftermath of the horrific 2012 Sandy Hook Elementary School shooting.
“It’s very frustrating. I still feel really strongly about it,” Toomey said. “It would be a modest but very constructive step.”
Amo offered another suggestion, one likely to rankle the NRA. Since the country seems all but incapable of stemming the tide of gun violence, why not tax firearms sales to fund resources for current and future victims of gun violence?
“It would make people think a little harder when they purchase a gun: ‘Oh, this is a deadly weapon. This could kill or maim somebody,’ ” Michalik said. “I think that’s a great idea.”
“That’s where you’ll run into some opposition,” Casey said dryly.
The Senate would be unlikely to even consider such a bill, he said, because “the gun industry has to push a narrative that there’s an effort to remove guns from people. Because if they don’t keep up that narrative, which is soaked in fiction, they won’t be able to sell enough guns, and their business model starts to unwind.”
While solutions remain elusive, gun-violence survivors continue to strive to reclaim elements of their old lives — dignity and self-reliance and hope.
Jalil Frazier thought he lost all of that when he was shot in the barbershop. In stark Facebook posts, he still struggles with his new reality.
“Sometimes I think surviving was the wrong choice,” he wrote in one post.
But in May,he felt his spirits lift thanks to an unexpected development. Friends, relatives, and complete strangers had quietly donated more than $40,000 to a GoFundMe campaign that had been set up for him.
The money offered his family something that seemed unlikely earlier in the year: a chance to start fresh, in a house that Frazier could easily navigate in his wheelchair. It seemed unlikely, after all, that their narrow North Philadelphia neighborhood could ever fit a wheelchair ramp and the other accommodations he needed.
But for all their gratitude, Frazier and his wife, Tamira Brown, felt torn by this new opportunity. Their hearts and roots were in the city, in the streets and shops and faces they’d known for years.
Could they really leave it all behind and move someplace else?
If they stayed, could they withstand the constant inconveniences, and the bursts of gun violence across the city that offered a daily reminder of Frazier’s brush with death?
A few months ago, after much deliberating, they made their choice. They relocated to New Jersey, and settled into a one-level home. It’s not a happy ending, not exactly, because they will spend the rest of their lives contending with the things Frazier can’t do, with complications and challenges they never anticipated.
“We would have liked to stay in Philly,” Brown said. “But we just couldn’t.”
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