Here's the thing...
Updated: Sep 26, 2021
by Ashley Roberts
I’m going to try to say this right, but inherently I’m going to get it wrong, and I’m going to get it wrong because I’m not dyslexic, I’m just the parent of a dyslexic child, and in being such I can only speak from my perspective, not his, and certainly not for any dyslexic person.
When I started my public advocacy journey four years ago I was a non-dyslexic parent trying to navigate the school system with little to no knowledge in order to help my child. My first year was quite a learning experience, but I don’t want to focus on that because I want to get to year two, because that’s when I had a conversation that shaped the way I advocate. Even saying those words doesn’t define it right so let me try again. I had a conversation that shaped the way I wanted to advocate, and the kind of advocacy that I wanted to foster in others. This conversation was with someone I deeply admire and consider a friend. She is an adult dyslexic who is a survivor of the educational establishment’s refusal to teach dyslexic children.
Survivor is the right word choice, and it’s the right choice because of the trauma that was created for millions of dyslexic children across the decades.
She said something profound in that conversation which was that the dyslexia advocacy movement was driven by almost all non-dyslexic parents who mean well, but the collective voice of the adult dyslexic is entirely ignored; their pain, their trauma, their everything is ignored in favor of the voice of the non-dyslexic parent who in their desire to march forth on behalf of their children, has forgotten they aren’t dyslexic and unwittingly create harm for the adult dyslexic population through the myopia of their actions. She told me she would only support me if I remembered that I’m not dyslexic, and that I honor the adult dyslexic voice and never forget their experience, because other than our children, theirs is the voice, the story, the truth that matters.
I try to always remember this, to keep these words as my guiding star.
So, an event occurred this week that has left me pondering many things over the last few days, and me being me, I have to get it out of my head by writing to make sense of it all. So to that end, let us begin with some definitions:
Definition of sympathy: Feelings of pity and sorrow for someone else's misfortune.
Definition of empathy: The ability to understand and share the feelings of another.
I think empathy can only be achieved when one has lived the same experience. No matter what the situation is, we all desire to give and have empathy, but the truth is that unless you can walk in that person’s shoes through shared experience, empathy isn’t possible. Feel free to disagree with me on this point, but that’s what my almost five decades has taught me about the human condition and our emotional capability.
Recently I shared this quote from Brené Brown:
“In order to empathize with someone’s experience you must be willing to believe them as they see it, and not how you imagine their experience to be.”
I then went on to say the following:
“Empathy is a difficult emotion to manage. We want to believe we have empathy, but unless you can truly understand what the other person is saying and experiencing, and layer your own similar experience on top of it and / or fully envision that happening to you as well, without altering the details to make is more “tolerable,” and experience the emotions they are conveying, then what you have is either sympathy, because you feel for them, or apathy, because you think it’s ridiculous and you could care less.”
As a non-dyslexic I can have sympathy, and to a slight extent empathy for the trauma of the dyslexic individual, but I cannot have true empathy because the trauma that a dyslexic child experiences inside of school isn't something I can relate to. I want to, I try to, and I have profound respect for that trauma, but I cannot empathize because I’ve not walked in those shoes and cannot layer my own similar experience on top of it because I do not have a similar experience. That is my truth and one I must own. It would be shameful for me to state or act otherwise.
The problem with not being able to fully empathize is that one cannot always see all sides because you can't necessarily see what you've not experienced. It’s not for a lack of desire to understand, it’s simply a bridge that someone who has not walked in those shoes cannot cross. As an inadvertent consequence, because you lack this experience, you may have a certain myopic view, which isn’t intentional, but it does exist, does happen.
Now, the act of being myopic isn’t evil when it’s not by choice, quite the opposite, but what it does mean is that we need to be cognizant of those who lived the experience, otherwise we are not valuing the truth, the issue, the person /people we claim to want to protect / honor / respect / help.
A meme circulated this week, that when seen through the myopic lens of only focusing on reading instruction, was liked, loved, and shared by many. I am, admittedly, one of those people. I loved the meme, but I did not share it. I had meant to, but I got busy and never got around to it. When I saw the meme, I didn’t see the image beneath the words, or the words that were crossed out, or what was trying to be conveyed, or how it was being conveyed. What I saw was the “corrected” text and I agreed with the statement. The problem was I did not look at the whole thing, did not consider the full context, did not consider the manner in which the message was being communicated. It is also important to add too that I do not think the creator of the image meant to insult or trigger anyone. I think this was an innocently meant message that had deeper meaning than could be realized at the time of its creation, because again, unless you walk in the shoes of the people who live this experience, your capacity to see all angles is limited.
If we deconstruct the words, the intended message, from the image, the message is simple, and one in which can all agree:
“The simplest way to make sure that we raise literate children is…to teach them to read with evidence informed instruction so they can lift the words from the page without guessing. Then they can find books they enjoy and read them.”
This is accurate regarding reading instruction, and again we all agree that this holds true.
As dyslexia advocates, we all fight for Structured Literacy. There are none of us that do not, dyslexic or non-dyslexic. The angst about the image that was shared has nothing to do with whether or not we should be providing Structured Literacy, and it is important that this is clear.
For dyslexia advocates who do not understand the angst, which is difficult to understand if you, like me are not dyslexic, know that it has nothing to do with the words themselves, it is the method and medium of delivery, and if we are to be dyslexia advocates then we must be cognizant of all aspects of dyslexia, not just instructional methods, because the truth is if we are not willing to be cognizant, then we fail to understand that the trauma people are sharing about this image is the trauma our own children will share, because while we fight like demons, we have not eradicated balanced literacy, and our children are still in schools where the damage that was caused to the adult dyslexic population will, can and is happening to our children right now.
I know we all fear this trauma, at least I do. I have friends already confronting real trauma with their own children who are still in school. My husband and I for many years could not discuss certain educational “realities” for pure fear of what it may mean for our child. We’ve both walked away from each other with tears in our eyes, choking on our words, saying, “I can’t talk about this.” We all do this I think, but while we fear what the present is doing, what the future may hold, what the cost may be, because there will be a cost so long as poor instructional methods reign supreme, we are still staring into a future of possibility and what if.
And just so it is said, balanced literacy fails all children. It is a failed pedagogy that has a chokehold on education, and more than just our dyslexic children are suffering under its deeply misguided principles, 64% of our children per NAEP, and that’s just in the US. What we do not know about the remaining 36% is how well their written expression is, to what grade level above 8th did they reach, to what careers are they capable of achieving, knowing they can read above an 8th grade level. 36% are not guaranteed success, all they’re guaranteed is that they can read above an 8th grade level.
“…our children and our grandchildren are less literate and less numerate than we are. They are less able to navigate the world, to understand it to solve problems. They can be more easily lied to and misled, will be less able to change the world in which they find themselves, be less employable. All of these things.”
– Neil Gaiman
So recognizing that reading instructional failure does exist, let us instead focus on what it was about the image that was triggering for the dyslexic adults within our community.
You’re a school aged child. You’re dyslexic. Despite how long it took, you did the work. It wasn’t easy. It took more effort than the kid next to you who did it over lunch three days ago, but no, for you it took much longer than that. You struggled understanding the words, so you struggled understanding what you had to do. It took more concentration, more effort, than anyone knows. You maybe even cried about it; punched your pillow; screamed into it to get the frustration out of your soul. Maybe you even didn’t do those things…yet…that assignment you worked so hard on is handed back to you and it’s red all over. Maybe you’re even met with comments like:
“We talked about this for weeks!”
“I don’t understand where the breakdown is here!”
“Go back and do it again!”
The red cross-outs, the color of blood telling a struggling child how wrong they were in their work output, how their hard effort was for naught because they still needed to be corrected, still maybe failed, still weren’t good enough….
The choice of edit on the image, without, I am sure, intending to do so, mirrored the experience of too many dyslexic children who are now adults, and their trauma was triggered.
And this is what we, as non-dyslexic dyslexia advocates must understand…once trauma from our own community is exposed, if we are not sensitive to that trauma, if we fail to acknowledge it, if we fail to own it, then we are not advocating for dyslexia.
And that may be a bitter pill for some, which I can’t and won’t try to assuage, because in the end, we seek to improve literacy to end the trauma. We do not seek to change literacy for the sake of simply crowning a new pedagogy in the endless cycle of educational pedagogies. We seek to change literacy in order to save our own children, and their children, and their children. We seek to save all children, everywhere, for all time. Therefore, if this is what we seek, then we must acknowledge the existing trauma of those who have already suffered.
To be clear, I am certain the creator of the image didn't mean the outcome, and so I will not share the name of the person who created it, and do not seek to shame them with this post. I seek to remind us all why we must be cognizant of the survivors of the issue for which we claim to fight.
And for the record, Neil Gaiman’s quote was from a lecture he gave in 2013 where the header was “Why our future depends on libraries, reading and daydreaming. A lecture explaining why using our imaginations, and providing for others to use theirs, is an obligation for all citizens.”
Here is the original, unedited image:
Neil’s speech is profound and beautiful. It does not decry literacy, instead it demands it. He does not side with any reading philosophy within the speech, he simply demands that all people be given literacy. We as dyslexia advocates know what that pathway is, and so we are aligned, because the reality is unbearable if we don't.
“I was once in New York, and I listened to a talk about the building of private prisons – a huge growth industry in America. The prison industry needs to plan its future growth – how many cells are they going to need? How many prisoners are there going to be, 15 years from now? And they found they could predict it very easily, using a pretty simple algorithm, based on asking what percentage of 10 and 11-year-olds couldn’t read. And certainly couldn’t read for pleasure.”
Now, allegedly this algorithm isn’t true, but is that to calm people’s fears through a lie?
The truth is I won’t pretend to know one way or another. The fact is it’s late, and I’m tired, but I needed to get these words out of my heart and onto the page. I need to remind us all that we must speak for all, be cognizant of all, and that means honoring the trauma of those who have already survived the system, because survival also doesn’t mean they’re whole.
Definition of survival: The state or fact of continuing to live or exist, typically in spite of an accident, ordeal, or difficult circumstances.
So, let us continue to fight for Structured Literacy; let us continue to fight for all children to have the right to read, but let us never forget why we are fighting.
And with that, I want to leave you with one additional quote by Neil Gaiman, and a series of Chris Riddell’s images from this speech. I hope you find them as beautiful as I do.
“Another way to destroy a child’s love of reading, of course, is to make sure there are no books of any kind around. And to give them nowhere to read those books. I was lucky. I had an excellent local library growing up. I had the kind of parents who could be persuaded to drop me off in the library on their way to work in summer holidays, and the kind of librarians who did not mind a small, unaccompanied boy heading back into the children’s library every morning and working his way through the card catalogue, looking for books with ghosts or magic or rockets in them, looking for vampires or detectives or witches or wonders. And when I had finished reading the children’s’ library I began on the adult books.”
You can read Neil's full speech here: https://www.theguardian.com/books/2013/oct/15/neil-gaiman-future-libraries-reading-daydreaming?fbclid=IwAR3-mwl0Uod3AczYRWde-G09gjvXMR_hI5vFtiKVzZFagWo_cC1WK5dZi3w.