The phrase, ‘Disability Is Not A Bad Word’ comes from the need to tell society that, yes, we may be disabled, but this does not mean our lives are smaller than yours. We are not smaller than you. It means we are not monoliths or riddled with only sadness-void of agency or worth-as you may immediately suspect. It means we are full multi dimensional beings with abilities, desires, contributions, passions and dreams with the capability to influence love and eroticism. It means we have all the same range of emotions and quality of living as non disabled people.
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What Is Pain?
I've become afraid of my body. I appreciate her and all she has carried us through, but I'm still afraid. I'm afraid of new treacherous body tales, new pain and an uncertain future. I'm afraid of its fragility. I'm afraid of the inevitable.
I drew 'Torn' in response to a series of mysterious chronic conditions seemingly unrelated to my muscle-wasting condition. Some of the pain is from a body that is breaking down, but since 2016 I became enraptured in chronic illness & new diagnoses journeys.
What is Pain?
Pain is a way of being in the world; a way of being one with existence and detached at the same time.
Pain is a privilege of the living, an aperture of death.
Pain is an agonizing affliction.
Aching pain. Silent pain.
Physical pain. Emotional pain.
Can anyone hear me? pain.
Please, leave me, pain.
Why are you here? pain.
Can I make it through? pain.
Pain that has no silver lining. No smile to contain. No positivity to quench.
Pain that obfuscates any possibility of light at the end of the tunnel.
Pain that combats itself through intimate touch; a natural painkiller, a blurred dichotomy between aching & pleasure.
Pain is an intoxicating tonic with the ability to remove oneself from its own skin, compromising oneself with its lure, many times disguised as rage or hopelessness.
Pain has become a part of this body-decided upon since the genetic union of biological parents. After years of searching for answers and pleading for allies, I learned my condition was globally ultra rare and untreatable, one day leading me to complete immobility-top to bottom. But one can't truly understand what a prognosis means until they've traveled through it.
At diagnosis no one tells you there will be a list of progressive residual side effects to cellophane-wrap your entire life including chronic pain. No one tells you about the pain; an exhausting daily routine. I live in it, around it and beneath it every day. There is no choice.
My relationship with my body is one of duality. I'm afraid of my body, its ability to reverberate pain emotionally and physically, but I’m also in awe of its ability to endure. Yet still. The physical fragility is what frightens me. Everything is painful. Everything. My body is always screaming, I AM IN PAIN, in the smallest and most unforeseen ways. My neck has become a floppy rod of pain I can't count on. My fingers now tire solely from tapping on my phone screen. The sudden trouble with breathing, the scary spontaneous choking episodes with no witnesses to save me. Seeing others like me with breathing machines, tracheotomy recommendations, bedridden or gone from the by-product of a muscle wasting disease, all things I was told weren't side effects of this condition in its early days of understanding.
There are days I just can't and I don't. I'm so sad. I'm so lost in the pain. Other days, I assimilate — accepting its existence and a part of my days forevermore. There is a frustration with not having a choice which can trail to humility. How dare we think we get to have a choice? But our pain doesn't always have to have an inspiring ending or interlude or lesson to learn. We don't have to compare it for perspective. It doesn't have to benefit others or be something we attach meaning to or thread a purposeful tale or positive arc. There doesn't have to be perspective when darkness is eclipsing you. It just exists. It hurts to hurt. And that is enough right there. To all those hurting right now, physically or emotionally, I think of you. I love you. #kamdraws #kamwrites #kamswheelstravel
For more ♿️ travels, disability and accessibility musings, mini-memoirs & art @ https://Instagram.com/kamredlawsk
What Is Vulnerability?
What is vulnerability and why is it scary?
Vulnerability comes from Latin vulnus, meaning “wound”. It is the quality of being harmed or the willingness to be hurt.
No one wants to be hurt, and understandably most won’t risk further pain by exposing their wounds or perceived weaknesses. This is self preservation mixed with societal folklore — that being vulnerable equals weakness, and should be shamed.
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This Is Me
This is me.
When I’m finally tired of having no independence.
When I’m finally tired of dripping fatigue.
When I’m finally tired of unrelenting pain.
When I’m finally tired of losing everything I love.
When I’m finally tired of being tired.
This is me in bed with no one in the world knowing or perceivably caring, trying to live through the physical and emotional hurdles a disabled body can offer. This is me when even the sunlight winking through the pursed blinds is still too much of a witness for me to bear.
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Another Mother’s Day
On our first morning in Barcelona I woke up at 3am crying to thoughts of my mother. The memory that rushed to my mind was when she used to work at Detroit baseball stadium for a summer or so to help make ends meet. I have a mind full of vivid memories. Jason is always surprised at how visceral my recollections can be. In any given memory, I can remember how the sun felt, the heaviness of the air, the gentleness of the breeze or the cloudiness of a subdued living room light.
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Thoughts and Prayers
It is easier to get a gun in America than a wheelchair. This is not an anti-gun post, this is an anti-do nothing post in the face of an undeniable problem.
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My First Children’s Book Week
My first children’s book week…
Read MoreMy story: Watch 44 years in 3.5 minutes
This is 44
Forty four and I like the vista of my life; all I’ve been through, seen and done, and all I’ve yet to see. I love what getting older and living life has done for my mind and vision. I’m at a place where I like who I’ve become and know where I’m going, more or less.
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Candace Owens is Ridiculous
“We don’t need disability in our face.” - Candace Owens
It’s true, disabled people wear underwear. Wild. I know. (Who let us out of the cage?) Recently, political commentator Candace Owens went on an angry rant, demanding an explanation on why a disabled model is featured in a Skims underwear ad, and how ridiculous and over the whole inclusivity thing she is, calling it stupid while mocking disabled people.
There are several signals here, the most prominent is her mirroring the pervasive thought society has about disabled people: we’re better not seen and we don’t deserve to live or have the same access non disabled are privy to.
Read MoreJudy Heumann - The Mother of the Disability Rights Movement / Dec 18, 1947 - March 4, 2023
It’s Women’s History Month and I want to highlight Judy Heumann; a significant disabled activist who recently passed away on March 4th. Much of the access disabled people have today is because of Judy’s work that began in the 70s.
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See the Self
…it’s about resetting our own lens and truly seeing the self; a systematic collection of psychological, social, experience, neural and molecular identity. The core of who we are. and where true awe inspiring beauty lies. The self is more than the physical.
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New Year, New View
Learning to love your body in all its stages is an inveterate adventure without a disability. But add a disability to the equation, with an atypical or anti-mainstream body, and you’ve got a lot more noise to work through.
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My 2022 (in video)
I get around. ♿️✈️ Here’s my annual travel compilation (4 minutes) of some of the moments and things we saw and did in 2022. (Remember, these are just highlights, not all the lights obscured by shadow and monotony)…
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