Rebecca Beaton is anxious about having brain surgery on Sept. 24 but she’s also excited. She recently had her head shaved in preparation for deep brain stimulation, a procedure that has the potential to change her life.
“I am nervous but I am determined to use my right hand,” said Beaton, 41, a quadriplegic who has severe cerebral palsy, a group of disorders that involves brain and nervous system functions.
The operation involves the implantation of a brain pacemaker, a device that sends electrical impulses to specific parts of the brain. It will likely help her gain control of her hand, which she has to keep strapped to her motorized wheelchair.
“It has to be tied down because I move so much,” she said, referring to the ataxic movements, or incessant tremors, she deals with.
Her unwavering bravery and willingness to advocate for herself and other people with disabilities is the main reason Personal Lifetime Advocacy Networks of Rhode Island (PLAN RI) will present her with a $75 scholarship to attend the TASH New England Conference during the annual award ceremony and dessert social, “How Sweet It Is!”
TASH, formerly known as The Association for Persons with Severe Handicaps, is an international association of individuals who seek to promote equity, opportunity and inclusion for people with disabilities. While the conference will take place in the spring, the ceremony is on Friday night at the Pilgrim Senior Center.
“I couldn’t believe it,” Beaton said when she found out about the honor. “I got butterflies in my stomach. I was so happy.”
Connie Susa, a Warwick resident and in-house coordinator of PLAN RI, a non-profit organization consisting of families who have loved ones with disabilities, said Beaton is an inspiration. She is impressed with Beaton’s perseverance.
“She is truly a winning personality,” said Susa. “She is so positive.”
Susa said PLAN RI was modeled after the PLAN organization that began in Vancouver, British Columbia. While they are not formal affiliates, the Rhode Island organization has permission to use the same acronym and was established in 1990.
“We build and maintain personal support networks around the vulnerable individual,” said Susa, noting that the main focus of PLAN RI is to help people find quality care for their relatives in the present and beyond the lifetime of caregivers. “[Beaton] is not a member of our organization, but we purposely reach outside our organization because we’re tying to highlight the principles that we believe in.”
Beaton, a resident and client of West Bay Residential Services at 158 Knight Street, began her crusade when she was in middle school. She demanded to be treated like every other student in the East Greenwich School System, as she desired to go to her local public school.
“I was at Meeting Street School and I was at the top of my class,” Beaton said. “I wanted to go to junior high, but they made every excuse why I couldn’t go.”
The East Greenwich School Department told Beaton and her family that they were unable to support a student with significant needs. While she felt frustrated, she never gave up hope.
With the encouragement of her parents, Ken and Jane Beaton, she got her wish. In January 1990, she became a student at East Greenwich High.
“I was so happy to go to high school,” said Beaton.
But she still had a few obstacles to overcome. It should be no surprise that Beaton was up for the challenge.
“They put me in all self-contained classes, but I was smarter than my class,” she said. “So in tenth grade, I was in regular classes. I loved the regular classes. Math was my favorite. I always loved math.”
Each year, Beaton gained greater inclusion. By senior year, she was fully included in standard high school classes with her peers.
She said she is grateful for her parents’ support, as her father informed the school department that he planned to exercise her legal right to an education in “the least restrictive environment,” and her mother helped her study at home by turning pages of books as she read.
An aide took notes for Beaton in class, as well as wrote out homework assignments when Beaton dictated to her. Beaton often used a head wand, or pointer that’s strapped to her forehead, to type out coursework, a tool she has used since she was 8 years old.
The hard work paid off when she graduated with honors in 1993. Four years later, she earned an Associate’s Degree in general studies from the Community College of Rhode Island.
Her academic journey doesn’t end there. She recently registered for a class at the Sherlock Center at Rhode Island College (RIC). The class is being offered two and a half weeks following her brain surgery, but Beaton is hopeful for a speedy recovery so she can participate.
Not only does Beaton love learning, she enjoys teaching, as well. She serves as a “Sentinel” at RIC, and regularly provides feedback to the center regarding developmental disabilities studies.
She’s a businesswoman, too. For at least 12 years, she has owned a greeting card company, Cards by Rebecca, which she operates from the group home she shares with a few other West Bay Residential clients.
Housemates, Bekah Larko and Hope Laurie, are thrilled for Beaton, as are round-the-clock staffers. They smiled and looked on with excitement when Beaton was being interviewed.
Larko, who also has cerebral palsy, encouraged Beaton to have the surgery, as she underwent the procedure three years ago. Interestingly, Larko will again go under the knife the same day that Beaton’s surgery is scheduled because medical advancements have been made since she first had the operation.
Susa described Beaton as a fighter who deserves recognition for her accomplishments. As someone who has a Master’s Degree in Special Education from RIC, Susa is aware of the many challenges people with disabilities face.
“She fought for normalization and quality of life,” Susa said. “There was much resistance for kids with severe disabilities or multiple disabilities having full inclusion and she is deserving of the same opportunities and education.”
Susa said “How Sweet It Is!” will also honor other advocates, including the late Dr. Siegfried Pueschel, who will be recognized for his dedication to family leadership, especially with regard to individuals with Down syndrome, as well as Providence Journal reporter Lynn Arditi for her coverage of the U.S. Department of Justice’s closure of two sheltered workshops in Rhode Island, and other stories relating to people with disabilities.
Tickets for the event, which is open to the public, will be available at the door. It will begin at 7 p.m.
Until then, Beaton is looking forward to the awards ceremony and conference.
“A couple of my friends are going, too,” she said. “They’re proud of me. I am a big advocate.”