Beyond the Iceberg: Voices of My Inner World

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Editor’s Note: This is a guest post by Lavender Darcangelo. Lavender shares her personal journey and insights on autism, blindness, and societal perceptions of disability.

Beyond the Iceberg: Voices of My Inner World

What if the things we perceive as weakness are actually strengths in the big picture? What if children who exhibit challenging behavior are actually trying to communicate something deeper? Those were some of the questions that I’ve always had as a kid that I didn’t know how to verbalize. I had a lot of struggles learning in school. I was given the proper training as a blind person such as orientation and mobility, where you use a white cane to travel, memorizing tactile and auditory landmarks/cues. At the time, I was diagnosed with a now outdated form of autism,but it was overlooked because of how capable I appeared. I was given a lot of tools that typically work for the blind, where my sensory differences due to autism would overlap, working against the tools I was given. This, I did not know how to communicate with my caregivers, which was why I came across more rebellious the older I got.

My caregivers at the time only wanted what was best for me: to be more independent. But what if that means dismissing the components of my autism that went against society’s definition of independence? When I would ask for extra help or an accommodation that seemed a bit far-fetched to them, they have said things like, “You need to figure things out on your own more. We’re not here to do the work for you.” So I began to have a belief. that exhibiting the components of my autism meant going backwards in my growth. I believed that a lot of things were my fault and I became utterly confused about where the line is drawn in the types of accommodations you need. What if I was traveling alone and I got in trouble with the authorities because of a communication issue? How do we know who is responsible when we can never truly know another person’s level of trying their best? We are a dismissive society, and all of these questions were what led up to my unhappiness. The components of my blindness were easy for people to acknowledge, but I felt like I wasn’t allowed to truly acknowledge the way my brain processes information.

It wasn’t until I met my boyfriend when I started thinking about the questions I had about the world that I buried a long time ago. I met him almost two years ago, shortly after I got re-diagnosed with autism spectrum disorder. I was having a rough night because I was four years out of high school and I was very unsure of where I should go if I needed to expand my horizons. So I looked up his videos on youTube. At the time we were only starting to know each other and I heard that he does graphic design, is an aspiring writer, and makes a lot of inspirational videos. In the first video I clicked on, he talked about how it’s ok to do things differently. He said that as long as the job gets done, it doesn’t matter the how. That it isn’t about going with the modern trends; it’s about what you offer differently, and that what is perceived as failure or avoidance is actually just a million ways to do something differently. But then when he mentioned how people with autism have a hard time with the fast-paced world, it was like my whole life flashed before me. I wish I could describe exactly what happened to me afterwords. I cried, and I cried the hardest I have ever cried in my life. It was like I had this inner knowing when I was a child that the world had everything backwards… that what was believed to be failure was just perception. When teachers would ask us to try our best, there was always a voice in my head that would say, “But what are you really asking when people have different levels of best?” And what about people who end up hurting others because of not knowing how to communicate their own pain? Not only did my boyfriend verify the experiences of my autism, he spoke a hidden truth that I always thought I knew but felt compelled to hide. We, as a society, have the tendency to walk away from the things that are uncommon. We push away what we don’t understand, when moving forward really means listening to what it’s telling you. We want to stop the thing because it looks wrong.

I guess you could say that a part of my ego died. What my boyfriend said not only opened up flood gates, it’s as if I went numb, running on autopilot. I have a vague memory of calling my best friend and telling him about my boyfriend’s video and the demons I had to face within myself. I don’t even remember much of anything that night. It was like I didn’t know what reality was anymore. Again! I was indoctrinated to believe that everything is a straight line, and if you color outside the lines, you’re not doing it right. But what would you do if you were told that there never was a straight line at all? Even those who hurt us profoundly have their own truths as well that they couldn’t communicate. Sometimes the best thing we can really do is to just recognize and listen, even if it means not knowing today.

About the Author: Lavender Darcangelo is a passionate advocate for disability rights and awareness. She shares her experiences as a person with both blindness and autism to promote understanding and acceptance.


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1 thought on “Beyond the Iceberg: Voices of My Inner World”

  1. Reblogged this on How Autism Self-Advocacy Revolutionalized My Life and commented:
    Unfortunately, this is an all too common experience for many people who don’t get diagnosed until adulthood, or who were diagnosed as children back when society’s understanding of autism was “in the dark ages”. Far too many of us adults on teh spectrum can relate far too well to this post!!

    Reply

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