Labeled disabled

Briana Beaver lay on a floor in a public bathroom stall in Chico, sobbing, unable to get up and unlock the door on her own. Parents and children trickled in and out of the restroom, washing their hands, glancing down at the little girl and walking out. Briana was 8 years old.

Her mother, Faelin Klein, noticed Briana’s absence and went to check on her. She found Briana lying there, reaching a shaky and frail hand out for help, her face beet-red and tear-soaked.

“I picked her up, and I looked at the women in the bathroom, and I said, ‘What is wrong with you?’ ” recalled Klein. “People have lost the human connection, and it’s appalling.”

Beaver, now 23, has cerebral palsy (CP), a nongenetic condition caused by trauma during pregnancy, birth or childhood, that restricts physical movement and development. She is nearing her graduation from Chico State with a degree in sociology, but the condition continues to affect every aspect of her life, as it has since she went limp in her mother’s arms when she was one hour old.

A short walk by the California Park lake she’s lived near with her mother for the last decade shows the difficulty associated with each step—the jerking of her limbs, her feet askew, her hips jutting from side to side. Her disposition and slurred speech cause strangers to assume she has a mental disability, and she is almost never addressed directly (when she is, it’s seldom a respectful exchange). This makes her feel like she is invisible and worthless to the able-bodied people around her.

She is not seen by the world as Briana Beaver the woman, Briana Beaver the writer, or Briana Beaver the straight-A student. She is not seen as a woman with a witty sense of humor who has a passion for marine biology, or as a bachelorette who wants to start a family one day.

Instead, she is—and always has been—“Briana with the disability,” a disregard to her accolades that makes her constantly feel as if she is one step behind the rest of the pack.

“As I get older, it gets worse,” Beaver said. “You’re not cute anymore; people become more disenchanted. The sense of being a burden grows as you get older.”

Now that she is on the brink of full adulthood, she is able to reflect on the experiences she had growing up in Chico, and her hazel eyes soften with vulnerability when she talks about the future. She knows the assumptions she’s up against—that she’ll never live on her own, that she’ll never work a normal job, that she’ll never raise healthy children.

But that is a fate she is unwilling to accept for herself.

“I want what everyone else wants,” said Beaver, a petite woman with curls piled atop her head. “Mostly, I just want to be out in the world and be supported by my community, and to support others. If I could sum it up in one sentence, it would be, ‘I want to be loved, and I want to love others.’ ”

On a recent afternoon, Beaver and Klein sat in their tidy, quaint California Park living room. Beaver—a naturally thin woman who recently lost weight due to medical problems caused by her CP—bounced on a squishy balance-ball chair, one of the only comfortable seats for her, as she spoke. Nearby on the couch sat her mother, a petite woman with a relaxed but direct demeanor, translucent blue eyes and a broad smile.

The two shared an explosive, unabashed laugh—the kind that fills the room—and they sometimes took turns speaking, handing the conversation off to one another and locking eyes during moments of deep reflection. Their dogs, an affectionate yellow lab named Scout and a quirky basset hound named Olivia, tromped through their living room, giving kisses and receiving loving pats on the head.

This is the home the two share, a place where Beaver is safe from the outside world and is not judged for her physical disabilities. Here, she can move around, from the floor to the couch to standing, to alleviate her constant bodily pain, and she can walk from room to room, knowing strangers aren’t fixating on the swagger of her hips or the drawl in her speech.

A spare room in the home also serves as the office of the Sunshine Connection, a nonprofit Klein started 15 years ago to give kids like Briana a place to play and feel accepted.

This loving space, like the others the two have lived in around Chico, has also served as a haven for Beaver, especially when she came home and sobbed after a particularly hard day at school. It’s a space where she has suffered physically, too, as she’s endured medical problem after medical problem.

CP is the most common motor disorder in children, and is second only to autism as the most common disability in children, according to MyChildWithoutLimits.org, an online resource for parents with kids who have developmental delays or disabilities. “Cerebral palsy” is an umbrella term to describe problems with movement and posture that are not necessarily caused by problems with nerves and muscles, but instead by damage or trauma done to the brain or developmental problems in the brain.

Most cases are caused before birth, due to injuries or abnormalities in the brain. Others are caused during the birthing process, and a small portion of children develop cerebral palsy during the first few months or years of life, after an infection or trauma such as a car accident.

CP affects quality of life on a case-by-case basis. Life expectancy for those with CP is normal, unless other medical problems interfere, and it cannot be passed onto children. Some individuals with the condition improve, while others’ health deteriorates due to other medical problems caused by CP. Those can range from drooling and breathing problems to epilepsy and skeletal problems.

Beaver has experienced a lot of complications growing up, and she was recently diagnosed with a new major health problem caused by her CP.

“I think about how much pain I am in at least once every hour,” said Beaver, who, despite her strong command of the English language, finds it hard to describe exactly what that pain feels like. She hasn’t slept through a night in her 23 years.

Likewise, her dedicated mother hasn’t slept through a night since the day her only child was born.

Klein describes that day as “the day from hell,” not because of the delivery itself, but because her doctor, who had a social affair to attend that evening, was impatient and hostile toward her throughout the process.

A very pregnant Klein arrived at a hospital with her husband (Beaver’s father) near their Monterey home on Oct. 6, 1987, planning for labor to be induced. The doctor wanted to give her a Cesarean section to speed things up, but with the help of her Lamaze instructor—who just happened to be visiting the hospital that day—Klein confirmed the baby was not in danger, and demanded she be given a chance to deliver with the aid of Pitocin, a drug that induces labor, as planned.

When Klein wasn’t showing much progress around 7:30 p.m., the doctor “cranked up” her Pitocin IV drip, she said, and she went into labor two hours later.

Beaver was born in 20 minutes. She was a healthy 8.4 pounds, and her Apgar score—a set of criteria that gauges the overall health of a newborn baby—was good. But an hour later, as Klein held her newborn, she looked down to see a lifeless infant. She called a nurse for help.

“The nurse lifted her up, and [Briana] just went limp and was blue,” Klein said. “They took her and never came back.”

Beaver was placed in the Intensive Care Unit. Nurses told Klein they didn’t know what was wrong, only that Beaver needed to be flown to the now-closed Mt. Zion Hospital in San Francisco.

“They put her in a coffin-thingy and they took her away,” Klein said, grimacing. “They said there was no room for me.”

No one spoke to Klein as she left the hospital, and she and Beaver’s father immediately made the drive to San Francisco.

“We just walked out; everyone stayed away,” Klein said, raising an eyebrow. “We didn’t know why.”

When Klein arrived, Beaver was sedated. Unbenownst to Klein, she had received a spinal tap. The birth certificate had yet to be signed.

“There was nothing about that experience that was healthy, helpful or supportive; it was me against the world,” said Klein, recalling the three weeks she spent at Mt. Zion by Beaver’s side to ensure no other unauthorized procedures were performed. “But I said, ‘This is my creation. I’m in.’ ”

Unfortunately, Beaver’s father’s response to the situation would be the couple’s downfall.

“I expected him to respond so differently to this crisis, but he just seemed inconvenienced by the whole situation,” Klein said.

Beaver chimed in, shaking her head: “I ruined his perfect image of the perfect family and the perfect house with the white picket fence.”

After three weeks, Klein was told Beaver was “mostly stable” and could be taken home, but the baby was lifeless and wasn’t eating. Klein was also told she had to learn CPR. When they got home, Beaver slept for a week, and when she awoke she almost never stopped crying—for a year.

Beaver didn’t hit developmental marks common for babies her age, such as sitting up, crawling and developing motor skills. But she was full of life; the two “talked” all the time, Klein said, and by the time Beaver was 1 year old, she had 100 words in her vocabulary.

Klein took Beaver for regular check-ups at the pediatrician every six weeks, but was put off by the impersonal approach of many traditional practitioners, she said. At one point, an occupational therapist examined Beaver and blamed her inability to sit up on Klein’s constant coddling.

“She said, ‘You hold her too much, you love her too much, that’s why she’s not sitting up, and she’s fine,’” Klein recalled.

Klein was also put off by Infant Stimulation classes, a form of baby therapy that helps with development.

“I took [Briana] to one thing, and I saw the therapists talking about all these problems around babies and kids. There was no baby-love bonding,” Klein said. “They were teaching kids that they’re a problem, and nobody seemed to think that was a problem.”

Klein continued: “You need to surround yourself with people who love and adore your child, and if they don’t, they need to leave.”

Klein pursued alternative-medicine treatments for Beaver in the Santa Cruz and Monterey area. A physical therapist suggested the child undergo craniosacral therapy, a technique that uses hands to ease nerve passages in the spine and skull. Beaver also underwent acupuncture—a therapy she continues today—and homeopathy, a technique that uses naturally occurring remedies to stimulate the immune system.

Her crying began to lessen.

“They really loved Briana,” Klein said, referring to the alternative-medicine practitioners. “It was different than with [traditional] medicine—they were conscious of Briana, and they were respectful.”

Over the years, Klein and Beaver spent thousands of hours in doctor’s offices—both traditional and alternative, planned visits and emergency ones—in an attempt to keep Beaver’s body at a place where she could “do life,” a phrase the two use often.

Three years ago, when Beaver was 20, she hit a crux. Frustrated by two decades spent “picking doctors’ brains” about what caused her CP, and being told reasons ranging from “It’s God’s plan” to “It’s a mystery,” she started doing her own research.

“After so many years, you start to say, ‘There’s a piece of the puzzle missing. I’m born, and then an hour later, I’m dead?’ ” Beaver said, referring to the five-minute period in which she stopped breathing when she was one hour old. (Brain damage occurs between three and six minutes, and mental retardation occurs after the sixth minute of asphyxiation.)

Beaver combed through the details of her birth, and started to wonder if the Pitocin given to her mother had anything to do with her disability.

She sat down at her computer and Googled: “Pitocin and cerebral palsy.”

“You would not believe what I found,” she said. “I felt like I’d had the biggest practical joke played on me in my entire life.”

Beaver found more than 500 legal cases involving individuals similar to her, and a slew of information regarding the unsafe use of Pitocin in the medical field. She even discovered lawyers who specialized in Pitocin and CP cases.

“So it’s not a coincidence, it’s not God’s will, it’s medical malpractice,” said Beaver, her arm in the air and jaw open as if she were hearing the news for the first time. “I’m glad that I figured it out on my own, but it was like reliving that all over for me. It was like dying a second time.”

The discovery also answered Klein’s questions about why nurses in the Monterey hospital had avoided her after Beaver’s birth.

“They knew what was wrong with my baby,” Klein said, her jaw stiffening. Klein and Beaver sought a lawyer after the discovery, but the statute of limitations on cases of the sort is only three years. Cerebral palsy is not diagnosed until age 3, a coincidence Klein believes “isn’t a coincidence at all,” she said.

Klein has never been afraid to be that mom—the kind of person who confronted rude strangers in public places—and was never afraid to “go to the top” when it came to getting her daughter the educational accommodations she needed.

From the get-go, Klein realized getting her daughter an education in a typical classroom would be a struggle. When it came time for preschool, the two had already experienced overt discrimination; they were rejected from a baby class when Beaver was 6 months old, for example.

Contrary to the advice of some agencies, such as the Butte County Office of Education, Klein had Beaver placed in a typical classroom. Klein experienced constant roadblocks—some preschools wouldn’t let Beaver bring her own food, even though she had allergies, and some wouldn’t let her use the special sippy-cup she needed, for example.

“The only way Briana is going to be in this world is if she starts in this world,” said Klein. “And there’s this constant concern about it not being fair to the other children. But what is fair about having a disability?”

Beaver’s grade-school years posed similar struggles, and the way she was treated by her peers was determined largely by the way her teacher treated her—a year-to-year change that made some grades more bearable than others.

Beaver describes third grade as “one of the best years” of her life, a year when she was in a blended class of typical students and students who had Individual Education Plans (IEPs) like she did.

Her teacher took a progressive approach toward inclusion—a controversial educational concept that deals with how to educate kids with special needs—and found ways to cater the classroom to each child, instead of “throwing them into it,” Beaver said.

“Being put in the back of the room with an aide is segregation; that’s not inclusion,” said Klein, referring to how most kids with disabilities are handled in public-school classrooms.

Klein shook her head as she explained the arduous process of creating and modifying Beaver’s IEPs—a legal document that requires large meetings—each year, including a time when Klein had to have Beaver’s neurologist travel to Chico from Sacramento to convince the Chico Unified School District that she needed certain accommodations.

“We build these walls so people won’t get close to these kids, when really you should just ask the children what they need,” Klein said. Beaver added: “Sometimes all I needed was for someone to hold my hand so I could walk over to the sink.”

Klein and Beaver rattled off other “stupid stuff” they went through to get Beaver her education, such as Beaver’s falling behind on her class work because it took several days to get the OK from a district inclusion coordinator to enlarge a worksheet.

“I feel like people saw me as just a thorn in their side, when I was just trying to get an education,” Beaver said.

Hoping she’d have better luck in another district, Beaver attended Durham High School. But she never made a single friend during her four years there. “Not one person connected with me. They wouldn’t pick up my papers, they let doors slam in my face. I was ignored during group work,” she said, shaking her head. “My classmates were still afraid to see me.”

Despite the social challenges—and perhaps in spite of them—Beaver was an overachiever academically, and she now attends Chico State, where she’s maintained a 4.0 grade-point average. She was a Spanish major (and spoke the language fluently), but her life took a turn in an honors-sociology course with Dan Pence.

“I didn’t honestly pay a whole hell of a lot of attention to her, because she was so quiet. I mean, she did not talk,” said Pence, whom Beaver likes for his sense of humor. “But all of a sudden, her ability to verbalize what’s going on in her world [in assignments]—or just deal with course-content in general—made her stand out.”

Pence got to know Beaver better when she took another sociology course.

“Sociology forces us to look at where we live, how we live, and who we live with. And what we try not to teach students to do is take for granted that which we take for granted on a daily basis,” said Pence. “And obviously, [Briana] cannot do that. She cannot take for granted that she can get into that bathroom, that she can get into that stall. In that way, she’s a born sociologist.”

Beaver realizes this potential, and is interviewing individuals with disabilities about their romantic feelings and relationships for her undergraduate thesis. So far, she’s interviewed eight people, but her biggest struggle has been locating adults with disabilities, a sign that the disabled community is fragmented.

Beaver’s research has also helped her grapple with the reality that most individuals with disabilities are disregarded as potential mates, a blow that is hitting her harder as she enters her mid-20s and looks to the future. It’s a future she did not anticipate spending alone. Growing up, she and her mother often mounted a mock radio show before bedtime in which she was a successful marine biologist with a wonderful husband named Toby.

Now that Beaver’s closing the books on her childhood, she’s equipping herself for the challenges of adulthood, and she knows how to choose her battles wisely. When a drunken Chico State freshman pushed her into the pool at the Wildcat Recreation Center—a move that could have seriously hurt her because of her poor balance—she climbed out of the water and confronted him. But when a woman in a car next to her in Redding mocked the way she was eating a banana recently, there was little she could do other than shake her head.

“It’s like, ‘Seriously? You’re going to make fun of me for that?’” Beaver said, shrugging.

She also plans to continue her advocacy work for individuals with disabilities. (Klein and Beaver offer disability-inclusion consulting for workplaces and schools, and they teach “Disability 411” to classes at Chico State, for example). Klein also offers coaching to parents with kids with disabilities.

“I don’t want to just complain; I want to do something about it. I’m doing what I wish I would have had for me,” said Klein, who sees the world differently after raising her daughter. “We’re a society that’s on auto-pilot, and that interconnectedness and sense of community just isn’t there.”

Beaver jumped in: “We’re all living in our little tunnel world, and people think [injustices against people with disabilities don’t] affect them, but they do. Everyone is a part of it.”

In five years, Beaver sees herself healthy, living near the ocean, doing conservation work, and in a relationship with a good man. She doesn’t even want to think about the six-figures’ worth of debt she’s in simply for “being Briana,” she said.

But, as long as her health improves, she is willing to let the details fall to the wayside.

“At the same time, I don’t want to know where I’m going to be. So much of my life has been other people telling me, ‘This is where you’re gonna be at 20, this is where you’re gonna be at 30,’ ” Beaver said. “If my body is in an OK place to live—just live—I’d feel like I won the friggin’ lottery.”