An immigrant from Jamaica finds a full life and career as a person with a disability in the USA

From The NY Times:

The young teacher knows every bump and pothole along the 10-minute ride to school. The entrance to the Bruckner Expressway is the worst. “Watch this one coming up,” she calls out to the Access-a-Ride driver.

The morning has gotten off to a bad start. Her new home health aide had forgotten to put in her hoop earrings and nose ring.

The van drops her at the Urban Assembly Academy of Civic Engagement at 7:28 a.m., an hour before most of her colleagues. The handicapped-accessible entrance ramp leads to still-locked doors. She dials the teacher who comes down each morning to let her in.

Then the security guard delivers the news: “Elevator’s broken. They have to call out for a repair.”

She wheels over to see for herself. On the pea-green elevator door, blue highlighter on loose leaf: “Out of Order.”

In an instant, her day has gone from bad to much, much worse.

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Dayniah Manderson (pictured), 30, an immigrant from Jamaica, cannot walk or bathe herself. Since she needs help going to the bathroom, she skips breakfast and does not drink anything during the school day.

For Ms. Manderson, New York has been a city of opportunity, the place where she received cutting-edge surgery and a master’s degree, where she landed a teaching job at a new middle school in the southeast Bronx and is raising a 4-year-old daughter. It is also a vertical city where elevators do not always work, a city of often impenetrable subways, nightclubs and stores.

When Ms. Manderson’s $35,000 motorized wheelchair rolls over aging blacktop and concrete, she feels every bump and crack in her bones; each sidewalk seam and tree root jolts a nerve. From the time she wakes up until the hour she is lifted into bed, each moment can be a reminder of what does not fit — a spirit that does not fit a body, a body that does not fit a wheelchair, a wheelchair that does not fit a world.

“I couldn’t live a day inside her body,” said Dr. Roberta Shapiro, who counseled her through a teenage abortion, helped secure her lifesaving surgery and has become a close friend.

But Ms. Manderson manages to arrive at work on time, get her hair done every other week and shop regularly at Victoria’s Secret — as long as everything around her works exactly as it should. It is an exhausting negotiation, a mountain of minuscule achievements punctuated by bouts of depression; a fiercely independent streak at odds with an inescapable vulnerability.

She smokes four Newports a day, out of sight of her students (and her mother). She gets annoyed with her home aides, especially, she said, “when they’re just in it for the money.” She has spent the past six years in a fractious, sometimes violent marriage to a man currently behind bars, the authorities said, on charges of sexually assaulting her. But Ms. Manderson has learned to swallow when she has a sharp opinion about a stranger. “I might,” she said, “need to ask them for help at some point.”

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Since she cannot make it to her third-floor classroom, her sixth graders have been brought to an empty music room. The haphazard seating and the piano in the corner distract from the task at hand: identifying sentence types.

Finally, Frank Moreno, 11, asks, “Why aren’t we in our regular room?”

“The elevator is broken,” she says, “and my wheelchair cannot go up stairs.”

“Why can’t someone carry you?”

She smiles. “How much do you think I weigh?”

Frank considers. “Seventy pounds?”

More like 140, but the chair adds 298.5 more. The joystick-controlled panel near her right hand is her lifeline, and on this morning it allowed her to circle among fidgeting students.

She was not even supposed to be there. She was supposed to be dead by now.

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As a 2-year-old in Montego Bay, Jamaica, Dayniah clung to her mother, Millie Williams, when she was encouraged to walk. Doctors at a clinic in Kingston gave her a diagnosis of muscular dystrophy. Ms. Williams said one told her to “prepare a coffin.”

The recommendation was institutionalization. But after two years of seeing Dayniah diminish, Ms. Williams brought her home, determined that she should live as normal a life as possible. “My mother never emphasized my disability,” Ms. Manderson said. “She had the same expectation as if I was an ambulatory child.”

This was a challenge in Jamaica. Ms. Manderson remembers doing well in school and having many friends. She does not remember seeing one elevator.

After a local doctor offered to treat her “evil spirits,” they moved to the United States in 1995.

Specialists said Dayniah had spinal muscular atrophy Type II, a degenerative neural disease that occurs in 1 in every 6,000 children. It is caused by a genetic defect that impedes the creation of proteins needed by motor neurons. Motor control diminishes, muscles weaken and, eventually, movement ceases. Those with S.M.A. Type I, the most severe, usually do not live beyond age 2. The prognosis for Type II varies widely. But when Dayniah was doing research for a school paper on the disease, her heart sank: The encyclopedia said those who had it rarely lived beyond 30.

Most spines look like 6 o’clock — straight up and down; by the time she was 14, hers had folded to 5:40, a 111-degree angle. She could not hold herself upright in her chair. The more bent she became, the harder it was to breathe, as her ribs pressed down on her lungs.

She and her mother went to Jacobi Medical Center to be qualified for home-attendant services. Dr. Shapiro, who was in pediatric rehabilitation, noticed her in the waiting room: so pretty, so disfigured. Dayniah was not her patient, but Dr. Shapiro could not help herself. “I don’t know why it was, because normally we’re trying to duck work,” Dr. Shapiro recalled. “But I just looked at them and said, ‘You come here.’ ”

Thus began a 15-year friendship. Dr. Shapiro, now 49, became Dayniah’s confidante, helping her through the difficult decision to have an abortion at 16.

“She was a beautiful teenager totally disabled in a wheelchair growing up in the projects in the Bronx and wanting to feel as normal as possible — part of that was feeling her sexuality, and she wasn’t very safe,” Dr. Shapiro said. “She began confiding in me about her feelings and her thoughts, her fears and her desires not to live any longer at times, and her depression and her joys.”

Dayniah excelled at Theodore Roosevelt High School, near the Botanical Garden in the Bronx, graduating sixth out of about 400 students in the class of 1999. At New York University, she majored in English education, lived in the dormitories — with an overnight aide — and worked in a campus office. She earned a master’s at N.Y.U. and hopes to someday become a principal.

While visiting family in Jamaica in 2001, she met Ghandi Brandt Jackson, a married man who flirted with her from behind a meat counter. A year later, he called to say he was divorced; they married in 2004 in a City Hall ceremony that was followed by lunch at an Olive Garden. Against medical advice — including Dr. Shapiro’s — she gave birth in November 2005. It was a healthy baby girl. They named her Akasha, a Sanskrit word Ms. Manderson said represents the fifth element, which nourishes the other four.

Ms. Manderson had grown accustomed to people’s saying she could not do what she wanted, and had learned to ignore the not-so-subtle admonitions that perhaps her ambitions were too big, given her disability. At a job fair, a principal warned her that the students might “throw her down the stairs.” But another offered her a job.

Being a teacher, of course, did not stop the disease’s progress. Breathing became something she had to work to do rather than an involuntary act. “I was waking up with pain, going to sleep with pain,” Ms. Manderson recalled. “I’d cry every other day in the shower.”

She knew time was running out, and was horrified at the thought of what would happen to Akasha. Dr. Shapiro said she thought she was a year away from having her spine collapse and began searching for surgeons. “No one would take her,” Dr. Shapiro said. “It’s very common because most people think, ‘Why bother? She’s going to die soon anyway.’ ”

Then, while watching the Discovery Channel, Dr. Shapiro learned about Dr. Oheneba Boachie-Adjei, an orthopedic surgeon who specialized in correcting severe spinal deformities. She called him and described her friend’s condition. He agreed to take the case.

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A free period between classes. She should be prepping or working on student progress reports, but her materials are two flights up in her classroom. So she wheels over to the auditorium, where about 30 disabled students, also stymied by the broken elevator, are improvising a gym class.

Frank comes in from dance class, very upset. They are playing, he says, “Barbie girl songs and ballerina music” instead of Michael Jackson. She explains, in an even voice, that it would be very difficult for the teacher to play songs that every student wanted in the short class time. Frank absorbs the logic, and goes back to dance.

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Dr. Boachie-Adjei, 59, has a deep voice that brims with a comforting confidence. Born in Ghana and educated at Columbia University, he practices at the Hospital for Special Surgery on the Upper East Side. Most years, he returns to West Africa and performs at least a dozen spinal surgeries at no charge.

By 2007, he had done the four-hour operation that Ms. Manderson needed 35 times before, but, he said, “it is always risky.” The spine is exposed and untwisted. Steel bars are affixed to the vertebrae and anchored to the pelvis.

A patient under heavy sedation can experience pulmonary collapse. She could wake up to find herself on a respirator for the rest of her life — if she woke up at all.

Ms. Manderson weighed the risks and the benefits: With the pressure relieved from her lungs and internal organs, she could expect to live an additional 10 to 20 years.

Enough time to see her daughter grow into a young woman.

In the weeks before her surgery, Ms. Manderson wrote a letter for Akasha, who was then 2, to open when she grew up. “Humility is a beautiful thing,” she wrote. “See a part of yourself in others and identify with their struggles.

“I am going through this surgery only to have the opportunity to see you grow up into the dignified woman I know you’ll be,” Ms. Manderson wrote. “Without you, my life would not have had such meaning, and now that you are here, it is a life worth preserving.”

She signed it, “Mom.”

When Ms. Manderson awoke from the anesthesia on Feb. 6, 2008, she immediately knew something was different. “For the first time in my life,” she said, “I could take a deep, full breath.”

There are still significant daily challenges. She is dependent on Access-a-Ride. Not drinking during the day leads to headaches from dehydration most afternoons (which she finds preferable to a diaper or a colostomy bag). She can sleep for lengths only on her right side; her right ear is discolored from the flesh’s wearing down. Two home attendants, paid for by Medicaid, are with her everywhere but school.

“There never is a private moment; there is always someone in your space,” she said. “But the reality of the situation is that I need help, so you don’t get bitter about it; you kind of suck it up and ask for the help you need.”

The blocky chair and her disfigured spine can make strangers uncomfortable. People look away as she rolls past. Many pedicure shops in her Bronx neighborhood refuse to serve her because she cannot lift her legs. Sometimes, in the middle of a sidewalk in Manhattan, she feels invisible.

So she puts extra energy into her hair, changing her weave style twice a week: Romance, Cascade, maybe Diva. It amazes her students.

“They look at me and think, ‘Is it some kind of magic?’ ” she said.

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In the music room, Frank cannot focus on the work sheet in front of him. The teacher encourages questions about her condition, but usually they lapse after the first week of school. The elevator malfunction has sparked Frank’s curiosity.

He asks how she puts her clothes on.

“I have someone to assist me,” she says. “And I have a really tall husband.”

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One Friday morning in March, Ms. Manderson received a text message that scared her: “How do you want to go out?” It was from Mr. Jackson, she said. The night before, Ms. Manderson said, he had threatened her; now she was afraid he was angry enough to hurt her. She called the police and filed a report. By Tuesday, he was in jail on charges including sexual assault and aggravated harassment.

It was not the first fissure in their relationship. Before the surgery, she went so far as to draft a separation agreement, stipulating that if she died, Akasha should go to Ms. Williams rather than to Mr. Jackson. When he found out, she said, he hit her on the nose. “I’m hot-blooded as well,” she noted, “and I rammed my wheelchair against him.” She filed a restraining order, and he was arrested a few days after the surgery, but she dropped the charges.

Among the things they fight over is Mr. Jackson’s immigration status. He has been here on a work visa but has been trying to get a green card; at one point, Ms. Manderson, who is a naturalized citizen, was so angry at her husband that she withdrew his immigration paperwork. On Friday, officials at Immigration and Customs Enforcement said that they had begun proceedings to deport Mr. Jackson, though they would not specify why.

When they were first dating, Ms. Manderson gave Mr. Jackson a two-month “trial experiment” to see if he could handle the realities of her day-to-day life. She did not tell him the specifics — that he would have to cut her steak in a restaurant and change her tampons. She had never let anyone other than family members and Dr. Shapiro get this close.

He passed the test. When his work schedule at a nursing home prevented him from helping her take her morning shower, he quit the job. “For most of the time, I don’t see the disability,” Mr. Jackson said in an interview before the recent altercation. “I just see the individual. I just see the person; that’s it.”

But Ms. Manderson said that within months of their wedding, “everything started to go downhill.”

“I am always guarded; it infuriates him,” she said. “I have insecurities about my disability, because I know that he could always see someone else.”

They have lived together; they have lived apart. They try not to argue in front of Akasha.

At 4, the girl seems to intuitively know her mother’s limits — she has never asked her to do anything she could not. But Ms. Manderson knows her strength is deteriorating. It takes longer now to wash her face. She gives herself little tests, she said, like trying to lift a book, just “to make sure I still can.”

“Theoretically, he knows it might get worse,” she said of Mr. Jackson. “But the degree and severity, I don’t trust he fully knows, because I don’t know.”

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By noon, the elevator is still out of commission. The repair company is tied up at another school. It could be days.

Her last group of students, a combined sixth- and seventh-grade English class, filters into the music room. A girl inquires, “Why are we here?” And she explains, again.

A boy named Donovan raises his hand. “Why is there only one elevator?” She says that is how the building was constructed.

Donovan considers. “Well,” he says, “two would be good.”

“Two would be good,” the young teacher agrees.