I am not dyslexic. I will never know what it is to be dyslexic.
Two years ago I attended a dyslexia simulation hosted by my local branch of the International Dyslexia Association. Here were the thoughts I shared on the experience:
Last night I attended a dyslexia simulation. It had been a long day so part of me didn’t want to go, but if I could catch a glimpse into my son’s world then I felt the 2-hour seminar was going to be worth it.
For anyone who has a child with a learning challenge like dyslexia, ADD / ADHD, Executive Function, Auditory Processing Disorder, etc. I highly recommend you attend a simulation.
For anyone who is a teacher, please please please please please please please, I beg you, find one and attend!!!!!!!!!
Even if you’re just curious, attend.
I was rocked to my core.
This wasn’t a pure dyslexia simulation as we the audience did not have dyslexia, therefore we couldn’t be “tricked” into seeing it, but the scenarios they set up had all of us extremely frustrated.
To my surprise, some of the group were angry and acting out, some of us, including me, shut down, we were all exhausted, most of us had headaches, and at one point all I did was laugh hysterically and uncontrollably as I had nothing left in me. The seminar instructors worked very hard to create content that would put us in that emotional state.
How do you “trick” the mind of an educated adult without a learning challenge?
Well, they did.
We were all very sad. We as parents were awe struck after experiencing, just during 2 hours, what our children feel every moment of every day. As a result, some were crying.
I was rendered speechless.
I can’t really describe much else. I don’t want to reveal what the scenarios were. What I experienced felt wildly personal and mine, just mine.
If 1 in 5 children is dyslexic that means 20% of the population.
There are 73,941,848 children in the US 18 years of age of younger. If 20% of the population is dyslexic that means 14,788,370 children are dyslexic.
Does that floor anyone else? That’s just dyslexia.
The fact of the matter is that while I was given the most fleeting of glimpses into the world my son experiences, I will never really understand, never really know.
I’m intelligent and empathetic so I’d like to know, but I can’t know what it’s like to be and experience a lot of things, for example what it’s like to live with cystic fibrosis or being a paraplegic, so why on earth would I ever think I can understand what my son experiences every single day?
The fact of the matter is the dyslexic voice matters, and honestly, it’s the only voice that really matters.
Yes, we are parent advocates and the insanity we are forced to wade through in order to force our schools to provide to our children what they’re entitled to is a very relevant voice.
The pain we feel knowing we’re sending our precious children onto a battlefield they didn’t ask for and are far too young to have to cope with, is gut wrenching, and a very relevant voice.
But, considering I’m not dyslexic myself, how would I really know what he faces, how he feels, how it impacts him mentally, emotionally? I mean really? He can try to describe it to me, but I will never see his reality, his truth, no matter how hard I try.
We are not designed to see any reality other than the one we have through our own individual senses and experiences. We never really know how the world is interpreted through another’s eyes.
Can we have sympathy? Yes.
Can we gain some understanding? Yes.
But to truly know? Never.
How then can we advocate for an enormously large segment of the population as non-dyslexic parent advocates, when we can never really know their truth?
The truth is we can’t. We can only advocate from our perspective.
Each person does see the world in a different way. There is not a single, unifying, objective truth. We’re all limited by our perspective.
Which is why I said, the dyslexic voice is really the only voice that matters.
I can speak for my son, but I cannot really represent his truth, only my perspective of his truth, with the noise and filters of my life, my experiences and my lack of understanding.
Other parent advocates who are not dyslexic can do the same, but it will be filtered through their perspectives with the noise and filters of their lives, their experiences and their lack of understanding.
Well meaning and educated teachers can also do the same, but it will again be filtered through their perspectives with the noise and filters of their lives, their experiences and their lack of understanding.
We, the non-dyslexic advocates and parent advocates, can attempt to control the dialog too, but that will NEVER achieve what needs to be achieved, not really, not completely.
Yes, we can effect policy, enact and champion laws and pursue changes via the court system, but again that won’t be enough.
It is through the truth of the dyslexic voice that real change can be achieved, and through their voice alone.
Think of the impact if all 14,788,370 children that are dyslexic in this country stood up at the same time and demanded our attention. Would people take notice?
The US Population is estimated to be 328,275,870. 20% = 65,655,174.
65 MILLION DYSLEXIC PEOPLE IN THE US!!!!!
If 65 Million people in the US stood up at once, would the world take notice?
Let’s just say I want to see that moment happen. It will be life changing.
5 million women in India formed a human chain to protest a temple ban and the world took notice.
The US dyslexic population is 13 times that.
Asking this isn’t easy. Trust me, I do know that.
There’s a lot of anxiety and strong emotions about the abuses that have taken place within the lives of our dyslexic citizens as the the lack of understanding, the lack of information that was (and still is) not being disseminated, the continued and willing disregard of what information had been shared had (and still has) a direct impact on their lives in the form of abuse and shame.
The above quote is from 1963 yet nothing has changed, not really, and certainly not meaningful enough.
I know it’s hard. I know it’s asking for a bravery I cannot understand. The dyslexic voice, your voice, your experience, your truth has meaning, is needed and should be shared. It needs to be heard. We need you to tell your truth.
We need you in order to make meaningful change happen.