Interviewed by Mary D’Apice, COMS and VisionAware Contributing Writer

Growing Up with Congenital Cataracts

Sheila as child wearing thick glasses

When Sheila Rousey was just two years old, she underwent surgery to remove the lenses of her eyes which were clouded by cataracts. Although she became blind in her right eye and wore thick spectacles, she was as active as her sisters, keeping up on bike rides in the neighborhood. “I had scuffed knees, but I didn’t think anything about it because we all did.” She was so adept at developing strategies for working around her visual impairment, that no one, not even her parents, were aware that she was legally blind. One strategy was to learn to identify people by their clothing because she couldn’t see faces. “Back then in the early 60s, it wasn’t so hard because not everyone was wearing blue jeans yet,” Rousey smiles.

Rousey demonstrated a tenaciousness when it came to competing with her siblings for good grades although homework took her at least twice as long. Public schools were not yet providing special education services or accommodations, but Rousey devised her own adaptive techniques. She made sure to study in the bright light of the afternoon and bring words on the page closer to her by using a magnifier she found around the house. In high school, she was an excellent student but did not risk sacrificing her social status by moving up to the front row to see the board. Instead, her friends let her copy notes after class.

Rousey felt she had few limitations until her older sister invited her to back the car out of the driveway. “I bumped the supports in the carport and my sister told me that was it.” While the incident may have been devastating at the time, Rousey recounts the story with characteristic good humor. She notes that this was simply one of many challenges she overcame with a positive attitude and her ability to solve problems creatively.

Rousey’s Son is Treated for Cataracts and a Genetic Cause is Identified

In the 1950s, many children whose mothers had been exposed to rubella early in their pregnancy were born with vision and hearing loss. Unable to find another cause, doctors linked Rousey’s cataracts to congenital rubella syndrome. It wasn’t until her son Eli was born with the same clouded lenses that Rousey began to doubt the diagnosis. Rousey’s vision loss progressed because high intraocular pressure caused by secondary glaucoma damaged her optic nerve. But by 1992, doctors routinely performed iridectomies, surgeries that release eye pressure to effectively prevent glaucoma. Rousey still marvels at how thirty years of medical knowledge completely changed her son’s prognosis. Now 24, Eli wears glasses, but he drives and works as a procurement officer at a school for the blind.

Like his mother, Eli grew to be quite tall, had long limbs and extremely flexible joints. But it wasn’t until just a few years ago that mother and son discovered these physical traits were linked to a genetic condition. When Eli complained of cold toes and fingers, Rousey took him to a cardiologist who reviewed the family history and diagnosed them both with Marfan Syndrome. The condition affects the body’s connective tissues which can lead to cataracts.

College and Career

sheila in wedding dress

Rousey married soon after high school, postponing college to raise her daughter. Although dozens of surgeries failed to prevent glaucoma from reducing her vision, Rousey decided to return to college in her 30s despite significant vision loss. But it was the mid-eighties, and schools had become infinitely more accommodating thanks to the Education of Handicapped Children Act of 1975, an earlier incarnation of the Individuals with Disabilities Education Act of 1990. She had access to a closed circuit TV ( video electronic magnifier) and the college recruited students to read textbooks to her over the phone. Always adept at networking, she initiated study sessions with sighted students who benefited from her exceptional note taking skills. She learned to use JAWS, a screen reader, to write research papers. Her fascination with technology was a passion she would eventually pursue, but first, she earned a Master’s Degree in Special Education.

Rousey spent five years teaching middle school students who had a wide range of disabilities and later became a Parent Advisor for the Georgia Parent Infant Network of Educational Services. Rousey made home visits to help children under the age of five learn adaptive skills before reaching school age. Children with visual impairments do not readily interact with the environment as sighted children do. As a result, these children often struggle with fine motor skills. So Rousey traveled with a light box to entice toddlers to reach for illuminated, colorful blocks and manipulate them.

As a parent coach, she explained why a child might tilt her head to bring objects into focus or how a light colored bowl on a dark placemat would make it easier for a toddler to feed himself. Along with practical advice, Rousey offered grieving parents a shoulder to cry on. She observed that their tremendous feelings of guilt often manifested in a failure to discipline their children. As an educator, Rousey explained that learning must take place in a controlled environment and that setting limits was a gift. Families viewed Rousey as living proof that someone with a visual impairment could go on to have a career and give back. “I knew that when they saw I had made it, they would believe their child was going to be okay.”

Student and Educator at North Georgia Technical College

Rousey loved working with families, but when her caseload in the rural area began to dissipate, she took the opportunity to indulge her interest in technology. Though she learned new software on her own, she soon got fed up with the fruitless hours spent on the phone with tech support. She enrolled in North Georgia Technical College and was introduced to an instructor who asked if she thought she could take a computer apart and put it back together again. “Yes” was her enthusiastic response. She had no prior experience, but since patience and perseverance had paid off in the past she was willing to bet on her future success. The computer instructor was candid about never having worked with a blind student before but he agreed to do his best to provide detailed, verbal descriptions for Rousey who couldn’t see detail. In college, as in many situations, Rousey practiced self-advocacy, but she notes that she is always keenly aware of the tone of her interactions. “I may be the only person with a visual impairment people meet, so I am aware that I am an ambassador.”

On final exam day, she recalls being led to a table with “a gazillion parts.” Rousey reassembled the motherboard, inserted drives in the case, wired up the computer and installed the software to pass with flying colors.

Right after graduation, North Georgia Technical College offered Rousey a position teaching a developmental studies class, a college readiness class for students who needed basic math skills. Rousey demonstrated inexplicable talent for writing on the board without vision but adapting the class to her own visual impairment was the easy part. The real challenge was helping students overcome debilitating math anxiety. One women confessed that the class was her second time around since she had spent the last semester hiding in the bathroom. With warm encouragement and humor, Rousey successfully calmed their fears. The room was regularly abuzz and full of laughter and so one day a curious administrator poked her head in the door. She was startled to see students at the board writing equations. Rousey recalls, “She said that she never heard so many people laughing in a math class before.”

A Passion for Sharing New Skills with Others Who Have Visual Impairments

While she worked as an educator, Rousey pursued her own passion for learning new skills. In 2006, she earned a certification in Literary Braille Transcription from the National Library Services. After years of feeling nervous crossing streets, her son encouraged her to travel to Michigan to train with Leader Dogs for the Blind. “He was graduating from high school, but he decided I should be the one to get a present of a new puppy.”

These days, Rousey volunteers with the Middle Tennessee Council of the Blind to provide smart phone and iDevice training as well as braille instruction. As a Peer Advisor, Rousey is enthusiastic about sharing her knowledge and experience with the VisionAware community. Although her own self-confidence may be innate, she fully believes that she can instill the same confidence in others. Rousey believes that the only barrier to learning is self-doubt. “The real trick to teaching,” she says, “is convincing people of what they can do.” VisionAware audiences can look forward to more informative blogs and down-to-earth advice from this upbeat and inspiring teacher.