The runt of some impoverished litter how dared I not survive? Otherwise, what does it say about society when we do not save the least of these?
My existence depends on your benevolence you pay me in tax from the scraps you render Caesar I’m no believer.
Remove your black boot from my neck, I don’t need your rations, fascist. I won’t be stranded by your standards of intelligence or physique.
Ableism likes its women blade thin starved till we’re dizzy bled out and white like glutted milk for children it deems we dare not feed until we fit.
Ableism lets me breathe provided I am blank and grateful as a grave made from milestones that pulverized my C-curved spine. This able life is a lie cleansed by the Savior who did not die. I’m saved by His grace. I don’t have to try, victory’s within me.
!
About the Author: Stacye Robinson
Stacye Robinson received a Master of Arts degree from Ball State University in 2013. She now lives in Indianapolis with her husband Ryne and Robinson.
The words below are the written words of Stephanie Winn’s poe “Dark Night of the Soul”. The video has her spoken words.
*Please Note: IDJ does not align with any one religion, faith, or belief system. Instead, we offer a platform where people with disabilities can express their diverse experiences.
Dark Night of the Soul
1 decade. It’s been 1 decade since my body turned on me, taking freedom and sanity in 1 fell swoop. Initiating a loop of nausea, dizziness, and headaches that takes my life and makes it something I do not recognize. The cries that emit from my soul are ragged and raw. I crawl to the bathroom, room spinning around, the ground no longer something I can trust. And all I know is I must find answers and a cure, but 10 year in I am no longer sure that they exist.
I am told to resist the dark hole that comes in these moments. Emotions take me to my end. But I do not descend. I wait for the recovering, the days of relief that make the suffering fade and my eyes are again able to see the beauty that is my life. When I’ve been stuck in bed and am now able to rise, the lies of sickness become instantly clear. My fear of lost relationships slips under the sea of love and support my friends and family always show me. I know the guilt of missing out is pointless as these memories are eclipsed by the constancy of my love. And my love is deep.
One of the gifts reaped from the pain is a gratefulness that seeps into my very being for all of the daily scenes. Like the sound of my daughter’s laughs, the warmth of a full bubble bath, my husband’s kiss on my lips, and the delicious salt of my favorite chips. These moments are not lost on me.
But, I am greedy. I want only the good all the time. This needy body of mine makes me sick as I tick off another day spent in the grip of chronic illness. So, I turn to my Maker, my Father, Creator.
The same hands that hold me, molded me. Did they make a mistake or are they unable to take this away? I pray and I beg. I negotiate. Offer up 1 fate in exchange for another. Let’s make a deal. If you heal me, I’ll serve you forever. Never ask for anything more.
But, deep in my core I know, the answer may be no or not yet. And if so, can I let go and even rejoice as I listen for His still, soft voice?
Oh daughter, this was not my plan, not the work of my hands. I hear your cries and I touch your soul. The miracle just looks different than you thought. I have fought for you each and every day in the spiritual battle you do not see. The sea is not deep enough to hold my love for you. I cover you with my wing and sing over you with rejoicing. I see your pain and I do not turn away. I stay and I will fill your cup. I will hold you up until this world passes into the next and you rest in me.
Until then, it is enough that He who calmed the sea, resides in me. Bringing peace in the storm and light in the darkest night of my soul.
About the Author:
Stephanie Winn attended Ball State University and graduated with a Master’s degree in Speech language pathology. She has worked as a speech therapist for the last 10 years in nursing homes, home care, and the school setting. She is currently on medical leave due to her struggle with vestibular migraines and hashimoto’s thyroiditis. She is actively involved in Urban Light Community Church in Muncie, Indiana. Stephanie is happily married to Seth and they have 2 daughters, Zayla (age 10) and Aria (age 8). Stephanie enjoys spending time with her friends and family, reading, and going for walks.
In this picture, Stephanie Winn has long brownish blonde hair, wearing a light blue, button-up, long sleeved shirt.
I don’t deserve your praise, so please don’t clap.
The looks of pity and horror Hurt too, you see
Because be it your praise or fear Be it a cheer or a leer,
One thing is always clear,
You’re singling me out for my disability, And living life is no inspiration.
Do my words give you clarity? Clarity not needed by my son.
I live life from a wheelchair That gives full independence. I know you see it or hear it,
And of my chair you’re fully aware So can you just give full acceptance
To me in my chair?
Because I promise my son can see and feel The fear behind your stare.
I’m not so different from you.
I get happy.
I get frustrated.
I get sappy.
I get infantilized.
I get mad.
I feel all the feels Tell me how living on wheels Makes me different from you?
Being a momma on wheels Is nothing strange,
And I promise my son doesn’t wish me to change.
For 29 months I nursed my son On wheels.
I chase my son On wheels.
I discipline my son On wheels.
I cook for my husband and son On wheels.
I change my son On wheels.
I say prayers for and with my son On wheels.
You see the wheels I live on aren’t all-defining Suffocating or confining.
They are a disabled mom’s All access pass
To her toddler’s world,
A world full of peace and calm
And also a world full of giggles and sass.
My name is Megan. I am disabled, I am Lebanese,
I have Cerebral Palsy, I am legally blind,
I am from the U.S.A., I am a wife,
I am a mother, I am a writer,
And of ALL that makes me ME
I am PROUD!
About this poem: I wrote this poem after my husband and I had to have our first conversation with our two-year-old son about ableism. He asked, “Why people so mean ‘cause momma sit? Momma tell them mean.” After our family conversation, I wrote this in response to my son’s question. I hope this little poem helps people to realize that societal ableism is still taught and fostered today. Many people may be unaware that they are fostering ableism, but the hard, sad truth is that they are. My husband was internally ableist for a long period of time not because ableist thoughts were purposefully passed down and placed on his shoulders, but because family unknowingly continue ableism’s terrible legacy.
This is a picture of Megan Deahl, her husband, and son.
Abput the Author:
Hi! My name is Megan Deahl! I am a wife, momma, writer, disability advocate, animal lover, and avid crafter. Do you have questions about ableism? Please feel free to email me at deahldisabilityactivism@gmail.com. We can only eradicate ableism through education.
