There was a hush throughout the room as Karran Harper Royal told her family’s story to a gathering of doctors in Atlanta. That response was typical for Royal, who is doing all she can to get the word out about attention deficit hyperactivity disorder (ADHD). When she finishes speaking, people usually flock to her in droves, telling her how moved they were by her experience and how it has impacted them.
Royal has been working with CHADD for the last several years to get her message out about the importance of early diagnosis and treatment of ADHD. Royal, who is African American, usually brings home the fact that, while her experience should have universal resonance, African Americans are a group of particular concern for her because of the evidence of undertreatment in that community. Royal is a tireless advocate, speaking at countless meetings before parents, adults, professionals, and even politicians.
“My whole life’s work is to make sure people don’t treat these black males as disposable human beings,” she says. No doubt Royal’s perceptions have been shaped by her own experiences with a brother who spent twelve years in prison due to what she believes are his various untreated disorders. In sharp contrast, her two sons, both of whom have ADHD, were treated early and have overcome many of its barriers.
To understand the personal journey that turned Royal into an activist who served on CHADD’s board of directors and enjoys a reputation of national renown in mental health circles, one has to first understand the story of Darran Harper, her older brother.
Falling through cracks
Forty-seven-year-old Harper, who was recently released from prison, is a living answer to the question of why no one ever heard about ADHD and mental health disorders back in the 60s and 70s. Like Harper, many people with untreated mental disorders fell through the cracks. Some flunked out of school and scraped by with menial jobs, while others faced barrier after barrier and ended up homeless, on welfare rolls, or in prison. Harper struggled with his challenges and eventually became an addict, a car thief, and a convicted felon.
“In high school, I knew I wasn’t like other people,” Harper explains. “I wasn’t comprehending. I was good with mechanical things, but in terms of reading and writing, I couldn’t do it.” Since he thought he was not academically inclined, he turned to auto mechanics, an area in showed a great deal of talent. But driven by symptoms of ADHD and co-occurring disorders, Harper was not content only to repair cars. “I saw that I could make money [either] fixing them or taking them.” He began using the money to feed his addiction to cocaine. Soon, he was longer just addicted to drugs. He was also addicted to stealing. And his two habits were mutually reinforcing. “I would take ten to fifteen cars a day, cut ‘em up or sell ‘em whole.”
On several occasions Harper’s exploits brought him close to both death and prison. In his mind, they were one and the same. He remembers that one day at his mother’s house, he decided to take a walk and ran across a 1988 Oldsmobile Delta. He couldn’t resist this usual temptation — but little did he know the car’s owner was watching with a shotgun in hand. “He shot me in my leg,” says Harper. “I got away.” An onlooker called police and soon the shotgun wielding man was testifying against Harper in court.
Another time Harper was driving to the movies with his girlfriend when he happened by a beautiful white Trans-Am that was for sale in all its glory. Shoe polish was visible on the windshield denoting the car’s price. The next thing Harper knew he was parking the car at a nearby gas station. As he tried to scrub the polish off the windshield, two police cruisers drove by. Officers recognized the Trans-Am. A high-speed chase ensued, and the car was recovered. But thanks to nimble feet, Harper eluded arrest that time.
A community underdiagnosed and undertreated
Harper had learned to beat a system that had for years failed him and others like him. Indeed, countless African Americans, particularly those of Harper’s and Royal’s generation, consistently go undiagnosed and untreated. There are multiple reasons for disparities in mental healthcare, including access to and affordability of services and stigma within a community that has been hard hit by racism, deception, and countless inequalities.
Research shows that while the prevalence rate of ADHD is roughly the same for African Americans and Caucasians, African Americans are less likely to receive medical treatment for the disorder. Instead, African Americans are more likely to rely on prayer and trusted family members for help, rather than medical professionals.
For some African Americans, the mistrust of the medical community is driven by memory of the infamous Tuskegee Experiment. In a dark chapter of American history that lasted for forty years, the U.S. Public Health Services allowed over four hundred African-American men to die of syphilis without treatment or any explanation of the illness that plagued them. Many people in the community have also long been alarmed by the large number of African-American schoolchildren, mainly boys, who have been disproportionately identified as emotionally disturbed and/or mentally impaired and ushered into special education classes. Over the last several years anti-mental health groups have sought to leverage this mistrust in their favor, with varying degrees of success.
“Stigma against mental illness in the African-American community is pervasive,” says Rahn K. Bailey, MD, chair psychiatry at the historically black Meharry Medical College and a member of CHADD’s professional advisory board. “It not only affects the person with ADHD or mental illness, who will not seek treatment, it also affects his or her support system. That includes friends, family, you name it.”
Heeding the warning signs
Harper bears out the statistics. His sister and her sons do not. While Harper was eventually arrested and sentenced to twelve years in prison for his crimes, his sister took action when she saw some of the same warning signs in her son Khristopher, now twenty-one years old, that her parents missed with her brother. “It fueled me to make sure Khristopher didn’t end up like Darran,” she says with a calm resolve. Later she would also seek an evaluation for her younger son Kendrick, now twelve years old, who has the inattentive form of the disorder.
With ADHD symptoms nearly identical to her brother’s at an early age, Khristopher was bright but struggled with inattentiveness and hyperactivity in school and at home. His schoolwork and his self-esteem suffered as a result. Puzzled by her son’s problems, Royal turned to the medical Center at Tulane University, where she took her son for an evaluation. After a thorough examination, he was diagnosed with ADHD.
Royal made sure her son followed a multimodal treatment regimen that the best scientific research showed to be effective. Treatment made a difference: Khristopher would go on to study at a prestigious school of music. “When I was to younger, I didn’t understand about this kind of stuff,” she explains. “I thought at the time that there were normal people and mentally retarded people and nothing in between.” That would soon change, as Royal joined CHADD, attended its conferences, and leaned more about ADHD. Soon, she was an advocate with encyclopedic knowledge of the disorder.
But she still wanted nothing to do with her brother. Then her mother died as a result of complications from diabetes. As Royal was going through her mother’s belongings, she came across some medical records showing that her mother had been hospitalized for depression. “The records showed that every time they treated her for depression, they got her diabetes and high blood pressure under control,” she said.
Armed with more information about her family’s medical history as well as the knowledge that she was her brother’s only source of support, she began to correspond with him. The relationship was soon renewed. “I knew Mama was one of his main lifelines, and I felt that everyone needs someone to connect to,” she said.
Out of Prison
Harper began reading the information his sister sent him about ADHD, dyslexia, and other mental health and learning disorders. He had always suffered from severe inattentiveness and hyperactivity, and had difficulty reading.
Both Royal and Harper were surprised that the prison system offered no real mental healthcare. It also did nothing to connect prisoners to the services and supports they need to avoid reincarceration and be successful in the outside world. Harper says that he and other people with mental health problems are paraded in and out if prisons in a cyclical manner, like cattle. That’s why studies show that jails and prisons, in the absence of appropriate treatirn1eat outlets, have become virtual warehouses for offenders with mental illnesses.
While the vast majority of people living with ADHD and mental health disorders are not involved in criminal activity, many people in the criminal justice system do suffer from some form of mental illness. A study by the U.S. Department of Justice released in 2006 showed that fifty-six percent of state prisoners, forty-five percent of federal prisoners, and sixty-four percent of local jail inmates had mental health problems. In all three groups, the majority of prisoners received no treatment.
Even Harper still hasn’t undergone an evaluation. Sure, he’s out of prison, but he doesn’t have a job and therefore has no health insurance. And in post-Katrina New Orleans, mental health services are hard to come by, especially for those with low incomes. Some facilities that served mainly low-income residents, like Charity Hospital, had to be closed after the flooding, and the remaining service providers are overtaxed and understaffed.
Harper now lives with his sister and her family and is trying earnestly and honestly to survive — hopefully even thrive — in a system that has repeatedly failed him. It’s proving to be an uphill battle. But his spirits are high, and he is bolstered by his close relationship with his sister.
With no income and no means of transportation, he recently asked Royal if he could borrow her car to run an errand. After some deliberation, she gave him her keys. While he was gone, she wondered what she had done. Then she looked out of the window and saw him pulling up at the house in her car. While she feared the worst, her brother’s errand turned out to be very routine.
Who knows if Karran Harper Royal will ever be able to change the world, but it’s clear that her brother is trying his is best to show the world that he’s a changed man.
Bryan Goodman, MA, is CHADD’s director of communications and the executive editor of Attention magazine.