We are alone.
The entirety of who I am in this space rests atop a foundation of who we are outside of this space.
And we are often alone.
My work and my voice here is one of sadness, frustration, anger…
Though it doesn’t always appear as such.
Because I deserve moments of joy, laughter, happiness.
But even those bits of my life serve a purpose. Those bits of peace and calm exist as messages. Messages that say even in these systems, even within our seclusion and isolation, I still smile. And I have to demonstrate that we are capable and deserving and worthy of knowing the joy that we do.
What an exhausting existence to live.
And we are alone.
Not here though. Not online.
But I don’t live here. I don’t live online. Who I show myself to be on here is reflective of the life I live offline. I challenge perspectives that seek to erase our experiences because you cannot see us if you do not know we exist. In all our humanity.
Every bit of who I am and how I live this life serves as a message. Whether I want it to or not. Therefore, to control a bit of that message, I channel it through this work…
because we are often alone.
Online you can find those who exist as you do. You can congregate in spaces designated for just those people who get it, who understand you, and know what you’re going through. The work that is foundational to many of those who advocate online is centered on…an online community that exists nowhere else, but online. Almost as if they’ve forgotten the world outside the metaverse. The one their physical self resides.
It is easy to get caught up in the community here. Where there are so many just like you, who go through things just like you, who can answer questions you have wanted the answer to for so long. That’s enough to make you forget, at least for a time, that there’s this world outside of this screen.
And our family is often alone within it.
My son has been the only one just like him within his school districts since he was in school. That’s not a typo. I meant district, not individual school. We have lived in towns with populations as small as 7K to cities as large as almost 200K. Same thing. The only one. They have had to create programs just for my son because they did not have one…and then they had to find children to add to it.
Every space we enter, disabled or not, he is looked upon and designated as the most “severe” of the group.
We have physically met two nonspeaking persons in our lives. My son is 15 years old. My son has been in dozens of speech therapy evaluations, having been turned away by 80 percent of them because his “needs were beyond their skillset.” There aren’t many here who use devices like our son does, there aren’t many who spell like he is learning to do, despite the images we see online…
we are often alone.
At Special Olympics events, alone. And that is after we find a chapter that would even let our child participate.
At Special Needs leagues for baseball, basketball, bowling, etc.
Alone. And again, that is if they even allow our son to participate as a requirement that many have is that they be considered “higher functioning,” or not carry “additional diagnoses that would make it challenging for them to participate.” Physical disabilities they could accommodate for. Developmental disabilities they could accommodate for but only if they were considered to be “mild in presentation.”
Even in spaces designated for those with disabilities, our family is alone.
Secluded.
Isolated.
And then that becomes a norm for us. Because if we cannot even fit in with those who are supposed to understand, where is there for us to go? Where can we be?
Every single time I share about my son, I get messages about how little people know about those like him. How they have never interacted with a child like him. I will chat with them. I will answer their questions. I will listen to them as they apologize for their ignorance. I will cradle their thoughts as a deep frustration brews within me.
I will admit that it angers me because we will, myself included, will give authority to another on an existence they do not know. Why do we give such reverence to those who do not know our lives, but speak as though they do? A question I must answer myself because I am guilty as well.
They may know of it. They may even get a glimpse into our lives from what I share here, but they do not know it.
Not fully.
How alone we are. How this world actively separates itself from us. How we lack the resources and the services and the accommodations for our son to access this world. This is by design. They corner us off. Then they cut us off.
And on here, it all seems so simple. Don’t do this with your child or you’re this type of parent. Or, do this with your child and you’re this type of parent. Online, it feels as though we are presented with an endless variety of choices and resources that we can just pluck like ripe fruit on a generous tree.
My life is anything but an abundance of choice.
I fight as hard as I do because we are alone.
The only one of us in most of the spaces we frequent.
We are often alone.
💜
we are alone.