By Mary Harnetiaux
So often dyslexic people are asked to define their dyslexia as a gift or a curse. Such a question might look like this, "do you think your dyslexia is a gift?" This is why the gift vs. curse conversation triggers me personally. There are so many varying responses based on each individual's background. The socioeconomic differences alone are separating and put us in an either/or camp.
Question: Who are the dyslexic people who are being asked about their dyslexia in the gift vs. curse format?
Where are they coming from with their answers?
Did this dyslexic person grow up facing poverty while failing in school? Did he experience trauma in school? Was he humiliated every single day in front of his peers? Was he taught in a closet or a dehumanizing storage shed on school grounds? Did he go home to unloving parents? Was his dyslexia never identified until later in life?
Or....
Did she grow up skiing out of the front door of her parent's Aspen home? Was her dyslexia identified as a young child, and was she then put in an appropriate reading program, and was she then appropriately accommodated throughout her educational years? Did she come home to loving parents who advocated for her and bought patents for everything she designed out of Play-Doh?
Or....
Was he relentlessly bullied and punched in the stomach every day he showed up to school? Was he bullied for, "being different," and for being seen learning in a room with students with severe physical and mental disabilities? Was he told he wasn't trying hard enough by his teachers and parents? Was he disciplined and viewed as having disciplinary issues? Did he never have an adult advocate for him or believe in him? Did he try to take his own life?
Or....
Was she homeschooled by a loving mother, on the beach, while she surfed?
Or...
Was she from a middle-class home in suburbia? Were her parents indifferent to her struggles? Did she feel alone -- as if she didn't belong in school or at home? Did she hurt herself to fit in and find a place of belonging? Did she ultimately discover her strengths and was she able to capitalize on them later in life thus finding success and acceptance and belonging?
Or....
Was his dyslexia identified in prison?
Or...
Was she taught in a private school for dyslexic students?
Or...
Is he completely indifferent to his dyslexia because he just didn't struggle with it so much. "What's the big deal? If I can do it so can you. No excuses [shrug]."
Or....
Does he also struggle with Bipolar disorder on top of dyslexia and depression?
Is she experiencing suicidal thoughts while being asking the gift question?
Does he have an ego and a personality disorder wherein he makes everything around him appear hyper successful and awesome and great?
Is she also dealing with PTSD and trauma while answering the gift vs. curse question?
Is he just having a really bad day, and on top of it all, was he also asked this awful redundant question that seems to be stuck in a revolving door?
These factors (roughly mentioned above) will also impact how we view our lives when asked this very personal and jarring question.
My point is, who we are as humans is completely varied and entirely complicated. Honestly, it's really hard to separate the dyslexia from our other human parts. It's hard to get an honest answer to a micro question when our backgrounds, advantages and disadvantages and personal experiences are so very different. I feel there is really no right or wrong answer because we all have an answer based largely on our individual experiences. Look, I almost died during childbirth, despite all the moms in my prenatal yoga class telling me that giving birth is an, "awesome and beautiful experience." Were they wrong? Based on their experiences, apparently not! It's the same for dyslexia. People are going to have a varied response based on their experiences, personalities and perceptions.
I personally feel the question of gift vs. curse is insulting. I really do! It's undoubtedly insulting when we are led to this type of questioning to prove a point for someone, or to prove a point for someone's research. I personally feel it is dangerous to lead our children, and future generations of dyslexic people, to a place of viewing any bit of their humanity as an either/or thing. Being gifted is a special kind of isolation. Being cursed is a special kind of isolation. Both things further isolate us from a sense of belonging. We may already be in an isolated place when asked this question, but there is no thought as to how the question makes us feel or view our own dyslexia. We are under the microscope, right? Our answers are for research, right? Unfortunately, within the dyslexia community, I am asked this question so, so often. It's almost become a common way to communicate. Yet, to me, it is always a question that is jarring to me every single time it is asked, because it doesn't begin to resonate with who I am as a dyslexic person.
I personally feel the biggest gift we can hand dyslexic people is to not ask them this question anymore, because it is such a narrow lens and it causes them to view themselves as an either/or thing -- which is a pretty dead place to be trapped in. This is why I lead with, "dyslexia is human." We have human needs and human rights. We shouldn't be discriminated against during our educational years or out there in life. Period.
To give a non-dyslexic mom an idea of how the gift/curse question sort of feels, it could be the equivalent of having someone ask you to define being a woman as a gift or a curse. Could you do that? Would you want to do that? What if the invasive question was asked right after a miscarriage? a sexual assault? or a discriminatory act against your gender? And what if your response was collected by your doctor as data for all to read and discuss whether or not being a woman is a gift? Could you even imagine the responsibility you'd feel to future young women given your response? How about this, what if a leading conversation starter with a stranger was having that, said stranger, ask you to define your race as a gift or a curse? Wouldn't that be a rude and unacceptable way to get to know someone? As someone put it in a comment, dyslexia is not a gender or a race, and I fully agree with that, but I add to this by stressing that it is a part of who we are nonetheless. Dyslexia is a part of our personal humanness. I feel we can put it in a better context so we don't feel we are put through a micro-strainer every time we try to discuss our dyslexia. There is a broader conversation we can be having, but we seem to always get stuck right here.
Look, most civil rights movements lead with a sense of sameness. They leave you with a sense of, "we are the same as you, we just have needs and rights that shouldn't be discriminated against, and we are worthy of equality and our basic human rights." The dyslexia movement is completely backwards. We lead with our differences. We put our fMRI scans out there so the world can see our different brain and how it learns to read differently. We talk about our different way of learning with the understanding that maybe we can help future generations. It's important and necessary to do this -- I get it. We make light of humiliating moments wherein we screw up our words and our embarrassing misspellings, and we do this to make our audience feel comfortable with our difference. Trust me, I testified in front of an educational committee to attempt to pass legislation in my old home state, and it was a raw and vulnerable place to have to recover from. We come from a place of, "we are different and here's the science to back it." We do this so that we can finally belong and so that our children can finally belong within a system that has always ignored our needs -- gift or curse aside. We stand in front of strangers and we use the word "disability" to bargain for our most basic literacy rights. There is no joy in this for us. If a dyslexic person finds joy and acceptance in themselves, if they personally and deeply feel their dyslexia is a gift, believe them. Let them have that. Be happy for them even if they annoy you with their positivity. If an individual or an entire group of people feel it is a curse, believe them. They are suffering. Help them. Support them. Continue to fight for them. They need you.
The damage done by this narrow conversation of, gift vs. curse, is that we now have two separate camps in the dyslexia movement. The strength-based gift camp, and the doomed, disabled, cursed camp. Well, that's just awesome.
When Donna (my dyslexic friend) and I addressed a large group of educators last spring (during an IDA conference), we purposefully and skillfully skirted the awful question that is always proposed to us. Instead we told of our personal stories and experiences from our very human combined experiences as dyslexic people. Our stories are still relevant because so little has changed for dyslexic people as a whole. Being taught in a closet (with a teacher who may have intentionally rubbed my leg) would be a hard example of what it feels like to be dehumanized and taken advantage of at the same time. Running a marathon with a broken pelvis just to belong to something is another dark story or how we strive to find our place of belonging. I personally find that defining the wrongs that happen to dyslexic people, and the experiences this causes us, is a more productive conversation than merely calling us "disabled" or "cursed." I feel elaborating on, and discussing the strengths some of us have discovered, helps us to find a path forward and opens us up to more possibilities than simply being called "gifted." Being dyslexic doesn't give us magical powers.
Again, I feel the most merciful and kind grace we can allow dyslexic people, in the 21st century, is to stop asking them to define their dyslexia as a light or dark thing -- an either/or thing. It is so limiting and begs of a much broader conversation.
Please don't put us in a place of gift or curse. Please don't put us in a different land. Please don't stick us on another planet. We don't belong to a dyslexic nation when we are holding your hand, and are walking right here beside you.
If the stat is truly somewhere along the lines of, approximately 20% of our population is dyslexic, then we are a pretty big population of people who have human needs that must be met. We need to keep advocating. We need support finding our voices. We need help with spreading public awareness. We need to help dyslexic children who struggle across all socioeconomic backgrounds, and we need to stop the wrongful and discriminatory acts that happen in the face of the ignorance that surrounds our dyslexia. We need to stop expecting dyslexic people to define their dyslexia in a cold manner that satisfies curiosity of some, at the expense of personal insult to others, or in order to make an "expert" right on a subject that has no real right or wrong answer. We need to leave room for future generations of dyslexic people to define their dyslexia as we progress and eliminate the issues that surround it. It's okay to leave some conversations open to future generations, after all, aren't we working towards their empowerment?
So where do we go from here? Up. We evolve the conversation.
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Mary is a wife, mother, artist, and powerful voice for dyslexia rights.
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