Post #15 Learning Disabilities Why? Lived Experiences
I was a ‘nuts and bolts’ English teacher. When teaching imagery in poetry I focused on one easily identifiable aspect. The power of certain letters in the alphabet to convey negative messaging was easily identifiable. Langston Hughes’ poem “What happens to a Dream Deferred?” was in the textbook, it was short and I needed to wrap up the lesson in 20 minutes or so. I led with, “Notice the (admittedly only 3) ‘D’ words used. What image do you sense?”
Downer ‘D’ words are prominent in LD messaging too. Case in point disability or deficits, disorder, defective, disease or the words that lay in a liminal space like different, diagnosis, degree, diversity. The names for the types of LDs are either fronted with a ‘D’ or carry a ‘D’ in the name: Dyslexia, Dyscalculia, Developmental Language Disorder[i].
I acknowledge other letters of the alphabet have not been left out. Downer words are fronted by lots of letters: stress, shame, blame, control, impairment, pressure, problem, punish, push (‘P’ words could give the ‘D’ words competition) and front liminal words too: pragmatic, labels, standard, special.
These words, saturating the concerns in the questions who, what, where, when, and how conjure questionable if not negative images. And images reflect ideas. Words to images to ideas have led me to ‘Why’? Why is a negative self-image germinated in a child trying to explain to a parent, “You know how I am not perfect”, a child’s explanation of obstacles to learning and growth?
Why these words, stamped over the lived experience of some LDers to explain their lived experience, have generated the belief that they are weak, failures, inadequate, imperfect initially prompted my questions. Rereading Rebecca Weston’s essay about her family’s experience with dyslexia, I saw an added note. She would rather she and her family were not blessed with dyslexia nor does she call it a gift, but her belief about her and her family as people living with dyslexia is not entirely negative. A further question surfaced: Why does the lived experience of some LDers also suggest a strength, if not a positive note, in their belief of themselves? The question becomes—why do these words take root so deeply for some, and not for others?
These words reflect the “lived experiences” which, in turn, germinate the beliefs that sway each of us in our negotiating of our individual worlds, encompassing individual Sets and Settings.
If humans could be imagined to be packages of seeds ordered, the package assembled ready to be delivered to a life on earth includes seeds, each with a set of genetics, epigenetics, biological predisposition, temperament. Once delivered to a door, each human package is then tucked into a soil mixed together by a particular physical, social and cultural setting, to germinate human beings with personality, values, mindsets, thoughts, moods or emotions, expectations, tendencies, individual choice. What we value germinates our perspectives.
If the ‘soil’ of a society is composed of a certain view of ‘normal’ for the society, then what is left out of that definition it seems must be relegated to definitions of ‘abnormal’. Numbers 3 and 4 of Thomas Armstrong’s Five Basic Principles of Neurodiversity say the definition of ‘normal’ and its counterpart ‘abnormal’ are written by what each time and society values. …Attention deficit hyperactivity disorder (ADHD), for example, appears to violate the Protestant work ethic in America…. Dyslexia violates our belief that every child should read…autism (sociability), depression (happiness), anxiety (tranquility), intellectual disabilities (intelligence), and schizophrenia (rationality). [ii]
Steve Silberman relates the lived experience of an autistic fellow:
After his Asperger’s diagnosis at age twelve, … He hadn’t changed, but the attitudes of everyone around him seemed to be transformed overnight. Suddenly I went from being someone that people believed had a lot potential, … to someone who surprised people by any positive attribute that I might display. Before, everyone focused on the things that I was good at,… After I was diagnosed, everybody focused on the things I struggled with, and the things that made me different, which were often the same things that people had framed as positive before.[iii]
Perhaps one of the most extreme ‘violations’ of our idea of ‘normal’ are intellectually challenged people. Adelle Purdham, a mother of a Down’s child, writes, In many cultures, having a child with Down syndrome is viewed as a bad omen, an ill fortune. … some version of this belief had a hold in my own Western culture. Why else are babies with Down syndrome aborted at a staggering rate of 80 to 90 percent, if not to suggest that our society views having a disabled child as a “bad thing”.[iv]
Rebecca Wilcox says that in the 1990s, dyslexia was still not widely accepted; it was seen as a middle-class way of making excuses for children who are less bright. Research has shown that learning differences are found across the intellectual spectrum. ‘But’ stigmas persist. If someone wants to distort a word, any word is fair game. Check out that special word ‘special’, twisted by Dana Carvey’s condescending church lady, “Well, isn’t that special?”.
When Wilcox was separated from the rest of her class to go to a ‘special needs room’ to write exams she tried to smile, but inside I felt like crying with embarrassment, …feeling anything but ‘special‘…[v]
Britain now has a Special Education Needs department to help learning different children negotiate their education. In B.C. it is called the Inclusive Education Branch and addresses the needs of people with ‘designated disabilities or learning differences’. Is there room in these titles for twisted, negative images to slip through?
And what a surprise. Planted in poor soil, seeds have difficulty growing into healthy plants. Children seeing themselves as somewhere between different and disordered have difficulty coping with learning.[vi]
The teacher is coming around to each desk handing out copies of the test. In a moment she will give the signal to begin writing. Most students will quickly pick up a pen or pencil and begin. A learning-disabled student will need one more permission to begin: a brain needing release from fear before attempting to translate the squiggles on the page.[vii]
‘Lived experiences’ may be as seemingly innocuous as changing schools or as devastating as many of the types of abuse that do not cease to shock people whether experienced while yet in the womb or in infancy and childhood. Yes we know that many children weather being ignored, misunderstood, neglected and yet grow into strong adults but it can’t be ignored that emotional neglect[viii] can divert thinking space to the hamster wheel of anxiety, to living in an environment of stress making it difficult to rise to potential.[ix]
One of the first things Yasik told us about the Orton Gillingham school we enrolled him in was his appreciation of the teachers’ repeated instructions, giving his tense brain time to hear and understand. Not sidelined in the classroom anymore, he came home and said, “You know what is different – they ask if you understand while you are doing it, a little later they check, and then again before it is over”.
Dr. Bruce Perry calls his readers to imagine a child living in a stressful environment at home or with communication difficulties or differences about to enter a school which… will expect this child to “act” typical. But that is impossible for the child. … In this overwhelmingly distressing situation, they will shut down or blow up. Either way, they don’t get the full benefit of the social, emotional, or academic learning.[x] They fall further behind, not meeting expectations, trying to mask their struggles, either by not entering conversation or by being the class clown.[xi]
As I have quoted in other posts, Phil Hanley found [e]ven writing a few words was exhausting. But no support or even concern was offered. He says of his school life, I had always been guarded. Played it cool. When you can’t read, you have to put on a brave face… As noted in an earlier post, even when it is something as simple as reading a few words on a menu, Henley covered with, “I’ll get the same.”[xii]
Tiffany Haddish’s lived experience … Before high school, I was told I was stupid every day. My stepdad used to tell me I was stupid all the time. My mama said it every day. My grandma sometimes. Definitely other kids at school. … I would want to fight you for calling me stupid.[xiii]
Philip Schultz’ lived experience: when another boy at his school called him a dummy, he did what his father did, he fought the kid …. These daily indignities fostered fear and angry reaction because of his anxiety over his difference, his dyslexia.
Yet we can hear a strength in …. I’d learned to accommodate and live around my compromised self in a somewhat comfortable and acceptable manner. Since I was ten I’d taught myself to live a life of opposites – because I couldn’t do this I learned to enjoy doing that, … [xiv]
I mentioned above, there is that ‘essential paradox’ for in the negatives, maybe like ‘diamonds in the dung’, there are positives. Yasik came out of the private school for the learning-disabled private school with an ability to read and more confidence about how to cope in a classroom. As he said, the teachers showed him how to manage his own learning, to make use of alternative ways to learn and order at a restaurant. He was confident enough to offer me ideas for helping my students.
This is the heads up from Rebecca Weston I could not ignore. There are positives in some people’s telling of their experiences. Weston is very clear about the burden of dyslexia in our present society, but with the diagnosis her parents sought for her, doors to being considered as something other than a dumb blond were opened, doors that gave her time and space to develop so that I could start to keep up with my peers, just as with Yasik. Looking back Westons says, I did well enough to thumb my nose at the naysayers.
Her sons now live in the world of neurodiversity with more acceptance, yes, but still encountering educators uninformed or short sighted and unwilling to adapt or change from standardized expectations. [xv]
Phil Hanley’s school experience is the stuff of his comedy routines now, but then comedians do that, don’t they? Living that comedy routine as a child was not funny, it was a misery. The diamond in his dung was his mother as she stood up in his defense before his educators, even if at times she could only come up with that I was “good with people”, a compliment reserved for friendly dogs. She … would annually present the argument to my teachers that I shouldn’t be forced to repeat whatever grade I was about to fail. She would insist I was smart- I just had a yet-to-be-determined problem.[xvi]
Jessica Berg, a mother and an educator, also knew there was a ‘yet-to-be-determined-problem’ which led to years of misery in school and a steady disintegration of her son’s engagement in a world of exclusion from classmates. He developed alopecia which belied his attempts to mask his inability to read and was swamped by anxiety and depression by the age of 12. The educational supports in place were not meeting his needs.
Berg’s son for all the struggle of his early years, is years younger than Hanley. Support is being better understood ad becoming more available. When his mom came to the rescue, she was more armed to stand for her son than Phil Henley’s wonderful mom. …The turning point, for Logan, came when … [his mother]…asked him to segment the sounds in the word “cat.”… He couldn’t do it. As an educator she had more awareness and resources to turn to. For her son, actions were taken within his school to provide an Orton Gillingham-based program of explicit, systematic phonics instruction.[xvii]
Shifts in perceptions are leading to shifts in support, enriching the soil of the neurodiverse. But because I am asking questions of learning disabilities most specifically in terms of adoption, I need to explore available and current research about the lived experiences for adoptees. I came across an article titled, “The Paradox of Adoption”.
As I have noted many times, people into the more mature years, generally well educated and situated at least in the middle-income bracket, are the most common definition of adopters in the West. They believe strongly in education and willingly provide all they can to give their adopted child the best advantages possible. And here is the paradox. These are the children most often struggling or indifferent academically and causing ruckus with classmates. The article offers the following: Possible reasons why family resources do not always produce great outcomes may be found in attachment theory, traumatic stress theory, and behavior genetics.[xviii] Maybe, likely, almost certainly, the soil is mixed with elements difficult to sift out.
Deborah Gray, whom I continually refer to offers these suggestions.
The child, usually after a stressful start to life, enters a new world no longer referenced by the first culture, with a new language. As she says: Children are not able to exert control over their lives through language, which frustrates and confuses them … the meaning of things changes[xix] even though they will likely continue referencing some meaning in the new language from the culture and language they still know best.
We know little of Yasik’s genetic makeup other than he certainly looks like his bio-sister, he spent little time with his bio-parents, missing out on parental nurturing, and however sweet the staff at his orphanage seemed, he did not receive the nurturing of a loving family. We do not know how deeply this has impacted his beliefs about himself. It seems Yasik boxed up his memories of his life in Russia and stamped ‘Do Not Open’ over it. Even so, fairly soon after coming into our home Yasik asked questions that showed he was aware of differences between himself and his buddies. He knew he had a different experience of family, that he wanted to separate himself from the pictures of his former life, the little book of photos recommended by adoption counsellors. He did not want the little photo album on his night table anymore. He wanted his friends to be the kids at his little school above the park. His early progress reports called him a social butterfly, perhaps as segue into saying he needed to do his own work, but it was obvious he made friends quickly. Yet he was never the one in the group actually doing much of the talking. He was smiling or laughing but left the chatting to others. Did his earliest years short circuit his language development or was the process of learning a second language leaving him uncomfortable with exposure in conversation?[xx]
Into this mix can be added another factor noticed by researchers. Yasik was born in November and one of his buddies was born in December. Both were accepted into kindergarten with the kids born early in the year. Yet when it came to a division of classes to reduce the load on the grade 2 class, he and his buddy, were kept back with the grade ones. Concerns have been written about for years that kids born later in the year are not as school-ready as kids born in the first few months.[xxi] With that awareness, the division makes sense, but to a six-year-old brain, how is ‘being left behind’ interpreted, especially as in Yasik’s case being seen as different already because of adoption, because of being ESL/EEL/EAL, because it was becoming apparent that he needed help with reading?
Over the years, as I have noted, there was a steady flow of messages posted to his psyche, telling him he was different in diminishing ways. Yes, it is an essential paradox, for these messages, sometimes subtle, sometimes direct, were largely aiming to aid. Choosing to send a child to a private, ‘special’ school for the neurodivergent or those with a learning difference, was the best option for helping Yasik catch up with the phonetics of language, just as Rebecca Weston‘s parents chose for her and she for her children. These schools did help Yasik and Rebecca. However, in the public mind, the designation ‘neurodivergent’ or ‘learning differences’ attached to these schools can sometimes be somewhat pointless; for many, these terms still register negatively as schools for the learning disabled. Throw in a set of proper pants, a crisp white shirt and a sweater when all your friends are in jeans and hoodies and a subtle message of weird, uncool is the cherry on top.
Essential paradoxes–there is a problem that needs addressing, given language, but with it comes support tainted with downer Ds…
Footnotes
[i] Mehta, Vishal “Why D Is the Most Negative Letter of The Alphabet” Apr 4, 2022
https://medium.com/the-shortform/why-d-is-the-most-negative-letter-of-the-alphabet-ace24a606222
https://fifthelementlife.com/blogs/blog/negative-words-that-start-with-d?srsltid=AfmBOopYzHBAwo 1020 of them
[ii] Armstong, Thomas The Power of Neurodiversity: unleashing the advantages of your differently wired brain, 2nd ed. Balance, 2025, 12, 13, 8-15
Silberman, Steve Neurotribes: the legacy of autism and the future of neurodiversity Avery, 2016, 303, 304, 399, 431, 454, 458Z
[iii] Silberman, Steve Neurotribes: the legacy of autism and the future of neurodiversity Avery, 2016, 437, 446, 454
[iv] Purdham, Adelle. I Don’t Do Disability and Other Lies I’ve Told Myself Dundurn Press, 2024, 196, 197
[v] Wilcox, Rebecca Bea’s wrong: we shouldn’t wish dyslexia on anyone: As Princess Beatrice claims dyslexia is a ‘gift’, TV presenter REBECCA WILCOX says…Daily Mail; London (UK) [London (UK)]. 19 Aug 2021: 42.
[vi] Letourneau, Dr. Nicole with Justin Joschko Scientific Parenting: what science reveals about parental influence Dundurn, 2013, 166-168
[vii] Lau, Nathan T T & H Moriah Sokolowski “If you think you are ‘just not a math person’ then think again” https://psyche.co/ideas/if-you-think-you-are-just-not-a-math-person-then-think-again?utm_source 16 December 2024
[viii] Perry, Bruce D., MD, PhD, and Maia Szalavitz The Boy Who Was Raised As A Dog: and other stories from a child psychiatrist’s notebook: what traumatized children can teach us about loss, love, and healing Basic Books, 2017, 19
YouTube Video: Oprah Winfrey & Dr. Bruce Perry in Conversation | SXSW EDU 2021 – YouTube
https://www.marshall.edu/bmhtac/files/2021/08/Faciliated-Viewing-Guide-for-Bruce-Perry.pdf
Dr. Bruce Perry Trauma-Informed Care: Bringing Trauma Concepts to Education, 8-17
Bosco-Ruggiero, Stephanie, MA, Gloria Russo Wassell, MS, LMHC, and Victor Groza, PhD adopting older children: a practical guide to adopting and parenting children over age four New Horizon Press, 2014, 177, 179, 181, 192, 193
[ix] Fisher, Naomi A Different Way to Learn: neurodiversity and self-directed education Jessica Kingsley Publishers, 2023, 33
[x] Perry, Bruce D., MD, PhD, and Maia Szalavitz The Boy Who Was Raised As A Dog: and other stories from a child psychiatrist’s notebook: what traumatized children can teach us about loss, love, and healing Basic Books, 2017, 19
YouTube Video: Oprah Winfrey & Dr. Bruce Perry in Conversation | SXSW EDU 2021 – YouTube
https://www.marshall.edu/bmhtac/files/2021/08/Faciliated-Viewing-Guide-for-Bruce-Perry.pdf
Dr. Bruce Perry Trauma-Informed Care: Bringing Trauma Concepts to Education, 8-17
Bosco-Ruggiero, Stephanie, MA, Gloria Russo Wassell, MS, LMHC, and Victor Groza, PhD adopting older children: a practical guide to adopting and parenting children over age four New Horizon Press, 2014, 177, 179, 181, 192, 193
[xi] Margalit, Malka Loneliness and coherence among preschool children with learning disabilities Journal of Learning Disabilities Austin Vol. 31, Iss. 2, (Mar/Apr 1998): 173-80. DOI:10.1177/002221949803100207 Top of FormBottom of Form
[xii] Hanley, Phil. Spellbound: my life as a dyslexic wordsmith Henry Holt and Company, 2025, 126,127, 140, 223, 252, 253
[xiii] Haddish, Tiffany The Last Black Unicorn Gallery Books, 2017, 5, 6, 7, 9
[xiv] Schultz, Philip My Dyslexia WW Norton, 2012, 24, 31, 44, 46-47
[xv] Wilcox, Rebecca Bea’s wrong: we shouldn’t wish dyslexia on anyone: As Princess Beatrice claims dyslexia is a ‘gift’, TV presenter REBECCA WILCOX says…Daily Mail; London (UK) [London (UK)]. 19 Aug 2021: 42.
[xvi] Hanley, Phil. Spellbound: my life as a dyslexic wordsmith Henry Holt and Company, 2025, 140, 223
[xvii] Berg, Jessica. “My teen couldn’t read for years, a dyslexia diagnosis changed everything” https://www.businessinsider.com/my-teen-couldnt-read-for-years-dyslexia-diagnosis-changed-everything-2026-1 Jan 2, 2026
Grandin, Temple Visual Thinking: the hidden gifts of people who think in pictures, patterns, and abstractions Riverhead Books, 2022, 170
[xviii] Zill, Nicholas the-paradox-of-adoption https://ifstudies.org/blog/the-paradox-of-adoption/
[xix] Gray, Deborah D. Attaching in Adoption: practical tools for today’s parents Perspectives Press, 2002, 149, 150
[xx]Hough, Susan D. Language Outcomes in School-Aged Children Adopted From Eastern European Orphanages, 2005/08/29, https://d-scholarship.pitt.edu/concern/etds/fbb77800-8f8b-4559-95ce-d33837f7b37d
[xxi] Fisher, Naomi A Different Way to Learn: neurodiversity and self-directed education Jessica Kingsley Publishers, 2023, 21
