Optimism is the faith that leads to achievement; nothing can be done without hope.

-Helen Keller

I just listened to a RadioLab podcast about a deaf/blind woman who is struggling with the ghost and shadows of the legacy of Helen Keller.
Helen Keller was a wildly complex disabled deaf/blind woman whose mark has been embedded in the thoughts and notions about disabled people at large, to this day. For example, the idea of eugenics and sterilization of disabled people are things she once supported during her life. Though she later in life changed her mind… her earlier thoughts and opinions on the subjects still linger and carry weight in some circles.
And she helped to found the ACLU and championed that society include disabled folks (but only those of Us who would be ‘useful’??).
Like I said, Keller is complicated af.
But the part where she too struggled was in living her life, in a society that didn’t have room or patience for her kind of ‘normal’.
She seemed to be one of the early poster people of ‘See, I can do it!’
And living life like that, I will say as a disabled person, is exhausting.
There is The Machine of Sandra, which has many moving parts and many delicate balances which must be maintained.
But I have my life too. Whatever that happens to look like at any given time. There are the things I like and how I just Am, my goals, dreams, aspirations, Self.
A lot of time, people look at The Machine and overlook me as a person. I’ve been trained to ‘matter’ as so far as my usefulness to a situation or person or place.
Being disabled (in the spheres and the spaces I occupy at times) means having some intrinsic ‘value’ before I even roll through the door if I am to ‘matter’ or be heard a lot of times.
People treat you better when they have something to gain. Things like being a whole person or having real opinions, get in the way. I see this sharply as a disabled person.
So you learn to stop talking and just keep doing. Because doing means you get to survive.
But doing without being nurtured and watered is depleting and exhausting.
I’ve been doing for a really long time. Because it meant living one more day to figure it out and maybe do better to live better.
Although I am excited about learning and getting to do new things with what I’m gonna learn in law school, I have to say that I am tired already.
Imagine, hoisting and strapping to your back, this machine, that keeps you alive. It’s heavy, has a ton of moving parts whizzing and buzzing behind your head. You pack all that you think you’re gonna need in another sack strapped to your chest.
You arrive at the foot of a mountain where the peak is hidden in the clouds- it’s so high.
And with all the things of your machine whirring and clicking, important sack tightened to your chest, you’re told that if you want better, you have to get to the peak.
You have to keep the machine going, you have to not drop your tools and important stuff that are strapped to your chest. You have to arrive in one piece.
You have to go – there is promise of better at the top of that peak because the alternative?! Well, you’re living the alternative and though it’s not bad, you worry about it’s stability and how you will fair in it a year, 3 years, 10 years from now.
So you take a deep breath, shift the weights on you from side to side, mentally mapping out your ascent.
That’s me right now. Hoisting The Machine of Sandra to my back, tightening all of my important things for the journey to my chest, assessing the grade, incline and weather of this mountain and getting ready to start
this journey…
I’m thinking of how I have to mask parts of my disability, to prove that this is something I can do, to do more, be more, achieve more to show I have the chops. I’m thinking of how much razzle-dazzle I have to conjure…
I am thankful and grateful for the things that have gotten me here – understand that.
But as a disabled person, every ‘regular, normal’ thing I seek to make my life better and to legitimize and validate my existence in this society, begins just like this. Every time.
Every. Fuckin’. Time.
I wish it didn’t have to be this hard always. I wish it didn’t have to be so lonely. I wish it didn’t have to be so circuitous.
Yet through all this, I have hope. I have hope that I will make it, hope that I will affect change for me and other disabled people. Hope that my life will be better. Hope that this all matters in the end some how.
Hope that it won’t be such a lonesome journey.
Because really, what’s the alternative?