Living with Dyslexia
Contrary to popular belief, dyslexia is not a disability that affects people only in their youth. Dyslexia, a cognitive disability, remains with people all their lives. The brain ages and changes just like the rest of our bodies, therefore the disability also morphs and develops with time. Dyslexia occurs in at least one in ten people. It is estimated 700 million children and adults worldwide have this disability, but only twenty percent know they do. Because this disability had little to no actual awareness until 1993 when it was finally recognized as a disability, so many people still remain undiagnosed to this day.
Dyslexia looks different in everyone, as does the severity of it. However, a common factor to many who have the disability is that they try to avoid disclosing it in their field of work. Whether it be because of the stigma or the fear of not being taken seriously, people with this disability work twice as hard to conceal this part of themselves.
“I was never formally diagnosed until college,” confessed thirty-two-year-old Kate Levernier. “It costs money and unfortunately my family never had the money for a professional evaluation.”
Levernier, who was raised in raised in El Dorado Hills, California says, her mother—whose brother was dyslexic—was taught visual tricks from him, that she used to teach her to help with her school work.
“I flew under the radar for years because of this, not necessarily a good thing,” Levernier explained. “I kept on flipping letters and words. I also replace words when I am reading or drop words completely. Same when I am writing. I also have an extremely hard time with reading comprehension and recall.”
She reminisced on the years she attended public school, from kindergarten to the end of high school, she was filled with self-doubt–doubt of intellectual capabilities and doubt that she was going to be able to graduate like the rest of her classmates.
Levernier remembers an incident where one of her teachers actually asked her in front of the whole class if she was dyslexic as a joke when she struggled to read out loud. She denied it, but she said that specific incident she made her feel even more insecure and hesitant to ask for help.
Eventually, she graduated and went to college as a liberal studies major with a concentration in music.
“I wanted to become an elementary school teacher to help all the students who [were] like me and fell through the cracks,” Levernier said. “I worked really hard to get C’s in school. No one should have to work that hard just to get C’s.”
In addition to the stress of trying to pass her classes, she explained that it was troublesome advocating for herself in college.
“I remember the time teachers refused to give me extra time on tests because I wasn’t diagnosed,” explained Levernier. “My English professor in the credential program even went as far to say she didn’t believe in dyslexia. She told me it wasn’t real.”
Presently, Levernier says that advocacy of dyslexia in the work field, in general, is also little to none. As a Governmental Program Analyst, she feels like there is little awareness to her disability when she is assigned tasks.
“When mistakes are made, instead of going over the mistake, how to do it correctly, and allowing the person who made the mistake the ability to fix it, the case is given to someone else to complete,” she described.“They think it just leaves because we’re taught a couple of strategies, but every time I learn a new word or new saying I have to work twice as hard to remember it, but I’m required to work as quickly as my other peers.”
Victoria VanTroba Coghill, raised in Temecula, California, also fell through the cracks of public schooling and confessed that she was never diagnosed with dyslexia until later in life when her daughter was diagnosed.
“It was something we were not encouraged to not speak about, it felt like I was a burden for others when I asked for help.”
Coghill said because of this stigma she didn’t reach out for help and instead let herself remain unhelped.
“I remember my sophomore year in college, one of my English professors sat me down and made me cry,” Coghill said. “She said she needed to intervene because my sentences were so bad and incomplete, and she told me she was even surprised that I even graduated from high school.”
Coghill says that these incidents were common in her writing, so it made her really underestimate and limit herself with her academia.
“I genuinely thought I wasn’t smart enough to get into complicated majors,” said Cohill. Her voice started to dwindle down as she said, “I just lowered my aspirations completely because I was convinced I was too stupid.”
Against all these odds, Coghill still managed to graduate. But her insecurity with language and her writing remained. It wasn’t until she saw her daughter showing the same warning signs and symptoms that she wanted to take action.
“My daughter, Gabriella, had an IEP (Individualized Education Program) because we thought at first it was a visual processing disorder and anxiety, and in order to keep her eligibility in an IEP, she had to show signs that she still needs assistance with a test every three years. Gabriella started to excel because the program went with her pace and because of this they assumed she didn’t have any visual learning deficiencies and tried to take her out of the program.”
Coghill said she deeply disagreed with the program’s decision because she knew that her daughter needed extra help. She didn’t want her daughter to feel like asking for help was wrong, she didn’t want her daughter’s self-esteem to be lost within academia, so she decided to get another professional opinion.
“My daughter would tell me stories on how she had a hard time reading and retaining information because words always looked so different to her,” explains Coghill. “She would tell me that she had [a] hard time spelling in class, and friends would tell her there was no way she was gonna pass her test, and it hurt me to see her be so hard on herself like I was.”
When Gabriella was taken to get a second opinion, they said that her programs miscalculated her disability and she was diagnosed with dyslexia. In the end, Gabriella was transferred to a school an hour away that specifically devoted to helping students with dyslexia.
Because they are able to teach her in a multisensory way, she began to excel again; she was the only sixth grader in an eighth-grade class learning algebra.
“Don’t get me wrong, there are so much more resources and awareness to the disability compared to when I was in school, but it’s still not enough, there are not enough educators that are aware of it or empathetic of it. I shouldn’t have to drive an hour away for my daughter receive more help. all public schools should have an IEP program or resources inside their school.”
Susan Barton, a dyslexia specialist and founder of Bright Solutions for Dyslexia , a non-profit that gives parents resources for parents who have children with dyslexia says that, she does believe that students are being diagnosed in a better rate compared to the past.
“It is more common with kids dyslexia to never be diagnosed today in the past,it has never been common for people with dyslexia to be diagnosed, said Barton. Sadly for the same reasons— Education Law does not require public schools to diagnose anything at all.
“Even though California just recently passed a dyslexia law, it got so watered down in the process going to one committee to another committee in Sacramento trying to get passed, that it even does not require public schools in California to test for dyslexia to all students.”
Barton goes on to say that the only positive impact was that the Board of Education finally acknowledges the disability exists.
Blake Charlton, a thirty-eight-year-old M.D., & cardiologist fellow at the University of California, San Francisco hospital, says that he also believes there is lack of information about this disability. As someone who is dyslexic in the medical field, he says he’s heard so many wrong misconceptions.
“Some of my own medical colleagues still maintain misconceptions,” Charlton says. “I’m talking about doctors, surgeons and staff have ridiculous false information about dyslexia, another reason why I don’t really like disclosing my disability at the hospital.”
Charlton, who was born and raised in Stanford, California, was lucky enough to be diagnosed when he was around six. He admits that it was because both of his parents were psychology professors that he was able to get the help he needed. But because he needed extra help, he was often touted and isolated from his other classmates. He admits that it was the most significant part of his childhood. His parents were acutely aware of Charlton’s emotional ramifications but were unable to soothe his insecurities with his disability. Instead, Charlton learned to use these insecurities as fuel.
“Being treated like this diagnosis was totally bad, created a lot of pressure to prove them wrong or come in terms with it,” Charlton professed. “It put a big chip on my shoulder and strangely it pushed enough me to work twice as hard. Yes, scholastically that’s wonderful, but it wasn’t to so healthy for my psyche.”
According to Charlton, there wasn’t much information on his disability so he always felt like he had to teach his professors—especially for accommodations that he needed.
“I always had to explain to teachers and professors why I need extra time on projects I even had to fight my school district for extra time when I took the SATs. It was exhausting when I had to convince teachers twice my age who were already skeptical to why I needed these accommodations.”
Despite this, Charlton was able to graduate college and even went to Stanford University’s School of Medicine in 2013.
“Medicine is a very unforgiving process and the idea of being disabled in medicine is not nearly as accepted as it is elsewhere in education and society,” explained Charlton.
Medical school was absolutely difficult especially since he was older and was already use to the prior technologic and time assistants. Regardless, Charlon passed.
Starting as an intern, Charlton would get paged all the time by pharmacists because he would misspell some prescriptions, and maybe in his emails. But other than that, Charlton says he has learned to conceal that side of him. He says that most of the attention is directed to the patient and that when he wears his stethoscope, nobody really questions his ability.
“I remain a crumby speller but I’ve gotten better with reading, I’m not as fast as the other doctors, they’re extremely faster than I am but I didn’t even read until the third grade. There are still certain words I will always have a hard time spelling.”
“As we get older, as we go through our twenties and our thirties and beginning middle age, we continue to experience mental plasticities that are greater than our non-dyslexic counterparts.
Charlton wanted to also make it clear that though for much of his youth he saw his disability as a curse, he also learned to also see it as a gift. He explains that because he was taught a lot visual adaptation strategies that gave him the upper edge in his medical procedures.
“Dyslexia, believe it or not, has actually helped me with the kind of work I do as a cardiologist. We use an x-ray machine to take two-dimensional pictures of the heart but, I’m able to imagine them three-dimensionally, so when we examine the valves of the patient’s heart, I can picture more parts of the heart and how they’re connected.”
Levernier, Coghill, and Charlton all agree on two things: one being that there should be more conversations on this disability led by the inside of academic institutions and two, if the school’s aren’t, then students who have the disability should speak up and advocate for themselves.
“You’re not just speaking for yourself, said Coghill. “You’re building that bridge of information that many schools, especially those that belong to public school districts, don’t have. You have a right to ask for help. Don’t ever feel ashamed for needing help.”