My Sista’s Keeper


with an interdependently disabled twist

by: Alexis Willias-Cavanaugh

 

Two baddie sisters, one with hella hair, and one in a manual chair, headed into an eye doctor’s office. The baddie with the hair

Greeted by the usual stares, and a non-shocking ableist, assumptive, and asinine question — “Does she have an appointment with us today?” asked the optical technician, without thought to look my sister in the eye to ask this very question.  

“She” is one of the two baddies mentioned earlier.  My sister, Alacyia, 21 years old, very much so verbal, and sitting literally right next to me, in her manual wheelchair.  I am Alexis aka Lex, inclusion advocate, resume & poetry writer, daydreamer, and Midwesterner at the moment with the curly hair, Alacyia’s 25 year old sister. 

“The appointment is for me!,” I responded firmly.  “Oh!” exclaimed the tech before locked her blue and soul-searing eyes in with mine, and then babbled on with her questions. I could feel my sister’s annoyance without even looking at her.

When the tech walked away, Alacyia and I looked at one another.  She rolled her eyes with a mighty force and said with hella annunciation “‘SHE’ can talk.” My sister was not solely upset about the healthcare professionals ignorance and lack of inclusive communication.  She was also pissed at the tech’s absence of giving her the soul-searing eye contact that was given to me, paired with the mere thought, that she as a 21 year old woman should be given the human decency to be addressed when present.

“Of course this seemingly able bodied person, with this person in a wheelchair, must be her caregiver!  There’s no way she could be her sister giving her a ride to an appointment” is likely what the tech thought. A common assumption that is made by people who do not engage with disabled folks directly.  

Physically disabled people are friends, siblings, partners, parents, and so much more. This outrages me because it is genuinely harmful.  This illuminates the reality that to many people, including some that work in healthcare, to be worthy of respect, worthy of being talked to, being heard out, and being viewed as an independent adult human being is only given to those who “look” like they are capable of knowing their needs, worth, capabilities, selves, and the prejudices placed upon them from nothing more than one glance.  

When you’re disabled in any form, you likely experience wild comments on the regular and have to be choosey with when you have the energy, the comfortability, and are genuinely in a safe enough space to correct and educate folks.  We weren’t in that space to do so, but that didn’t change how my sister felt about the situation, and likely won’t change the technician’s behavior the next time she encounters a disabled person.  Maybe it will, hopefully, it will, but who knows.  

What the tech didn’t see was my sister transferring herself into her own whip that she drives with using hand controls. What the tech didn’t see was her breaking her chair down, loading it up, and driving a little over an hour from our hometown in southern Illinois, where she currently lives, to my place in St. Louis, MO, to take me to the appointment.  

Part of the tax that comes with having ADHD for many of us is executive dysfunction and rejection sensitivity dysphoria.  Administrative tasks with many bits and pieces such as making appointments at a new eye doctor usually ends up becoming another thing on an endless to-do list that I push off doing because of executive functioning impairments.  Pair that with the apprehensiveness of asking people for rides out of fear that they’ll say no due to rejection sensitivity can make things like this a nightmare without the support of my family and my sister. 

Yes, I help my sister a decent amount when we are together, but what folks likely do not think about, likely do not see the help that is provided to me by her.  

Many times, I’ve counted on her to pick up my medicine, to help me with regulating my emotions when I’m beyond beside myself, to give me the courage to say certain things in my heart and on my mind, and to give me the confidence that is needed to be mustered up in advocating for folks who are marginalized and historically left out, underrepresented. 

The first few weeks after my sister sustained her spinal cord injury (SCI) in May 2018, I stayed with my mom at the hospital where she was life flighted to 2.5 hours away from where we lived in Illinois, at a hospital in Indiana.  I was there to provide extra support to my mom, my sister’s caregiver, and my sister as well.  

This last 4 years since my sister has had a SCI I have tried to help her as best as possible, while being mindful of asking for her consent with what she wants or needs help with.  I helped my sister with providing her people to begin building digital community and in person community with other people living with spinal cord injuries.  I try to uplift my sister when she is down, because in all reality life is hard as hell.  Having a disability in a world that often lacks inclusion, not only physically regarding accessiblity, but also excludes disabled people socially, makes stuff that much harder.  I get having struggles, I get needing advocated for, supported, and loved.  Which is why I go so hard in using my voice to amplify the realities of, needs for, and brilliance within my fellow disabled and neurdivergent folk.  

Interdependency within the disabled community is real, even while living solo.  Myself with ADHD being interdependent with my sister who uses a wheelchair are not the only cases I see this in though.

Time and time again I experience personally and see others being supported by their fellow peers, family members, and friends who are also disabled. Whether it be with providing resources, equipment, knowledge, or genuine love and support, I can truly say that disabled folks – whether their disability visible or not, truly advocate for one another in ways that is beautiful and not talked about enough.  

It’s time that we — 

Realize how accessibility for all, genuinely benefits everyone, and not just those who are disabled.

Understand that neuroinclusivity doesn’t just benefit neurodivergent folks, but also the neurotypical.

I am Alexis, I have ADHD.  My sister Alacyia is four years post sustaining a T-5/T-6 spinal cord injury. 

We are two baddies, one with curly hair, and one in a manual chair, that are independent, yet need each other.  

We provide the support that we can to one another, as we strive toward achieving our personal goals; while on our own individual, yet interdependent, and ever-intertwined pursuits of living solo.  

with love + light,

 

 

Disability: ADHD

Pronouns: She/her

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