Disability Pride Month
I am my Disability
“Be proud.”
“Don’t Complain.”
“Advocate.”
“Take up Space.”
“Feel your feelings.”
“Love yourself.”
“Be unapologetically you.”
“Acknowledge your privilege and make space for others.”
“Take care of yourself so that you can fight the good fight.”
“You're being a bit too loud, quiet down.”
“The space is limited.”
“How long will it take for you to heal?”
“Other people have it worse and survive.”
“I don’t think we have room anymore.”
“You’re being narcissistic.”
“Privileged bitch.”
“Cry Baby.”
“Cripple.”
“She’s faking it.”
“You’re starting to be a bother.”
“God, when is she going to get over this thing?”
“You’re disability is not you’re identity.”
“Wow look at you getting out of the house!”
“We don’t have to abide by ADA standards here, sorry.”
“You should just go home.”
“You’re so inspiring!”
“What’s even wrong with you?”
“Why would you be proud to be disabled?”
“You make everything about your disability!”
I watch beautiful stories of friends, family, influencers and celebrities celebrating and grieving their pregnancies, injuries, diagnosis, illnesses and disabilities both chronic and acute and the world celebrates and grieves alongside them, similar to the cadence above.
“You’re doing great sweetie! You’re so inspiring, keep on going” to “Ok we get it, how long is this going to take, stop complaining!”
Because there tends to be a timeline or stop watch of understanding, learning and empathy when it comes to illness and disability.
Society has a short tolerance for disability inclusion, and I believe that is due to the deep seeded ableism in our society that we have yet to uncover and understand that is deeply woven into white supremacy.
I unpack this more in my book, This is Body Grief (coming March 18, 2025), discussing how there is little to none grief literacy in Westernized cultures, tack on the tenants of white supremacy, capitalism and ableism and we have the perfect recipe for suppressed feelings that create and immense amount Body Grief especially in marginalized communities. Therefore, those who are in the depths of their own Body Grief tend to be turned away by those that don’t understand as our society has been taught that grieving must be done in a linear fashion and in private.
What is ableism: The dehumanization of disabled people. When we do not consider disabled people in the conversation, whether that be in architecture, fashion, culture, medicine, the list goes on and on.
Curb Cut Effect
The Curb Cut Effect is a theory I have come to live by, as it has proven time and time again to be true in every facet of my life.
When we design for disabled people and people of color first, we make things better for EVERYONE!
When we shift the narrative to disability as a human issue, that 1 in 4 people have a disability we are more likely to celebrate things like aging, mobility aids, rest, and retirement! The disabled community is the largest minority group that we will all become a part of at some point in our lives and it is a privilege to age!
If we can celebrate and be proud of our disabilities then we won’t be so ashamed of aging, or using mobility aids when we truly need them! We won’t hush those who are advocating for rights or our sisters and brothers who are sharing their stories of pain and strife that may last longer than society deems “appropriate”. Because when it comes down to it chronic illness and disability tend to be chronic believe it or not!
“I want to create a community where all disabled folks are safe to grieve and be proud. That is how I want to use my privilege and my platform.”
Grief and Pride
With Body Grief there is so much fucking joy and pride to be had! And this is where I think some confusion is had in the conversation surrounding disability pride amongst those who are disabled and those who are non disabled.
Disability Pride is Disabled joy.
Disability Pride is Disability visibility.
Disability Pride is Listening and Learning from Disabled Folks.
Disability Pride is Humanizing Disabled people.
Disability Pride is Advocating for Accessibility.
Disability Pride is Unlearning Ableism.
“I am a disabled person” “I am a proud disabled person!” and the response is often “but you are not your disability” and that in itself is a statement that is ableist granted I am sure it is well intentioned, but to be fair I am not here to hold space for intention, I am holding space for impact. Stay with me though.
“I am my disability.”
Just as much as you are a woman, a man, a mom, a black person, an indigenous person, a trans person, etc. My disability has provided me with so much perspective. My illness has provided me with so much resilience, tools, and adaptability to make it through life. Hell I know how to wheel my way through the cobblestone streets of Charleston with a dislocated shoulder, is it accessible? Not really. But do I make it work? Hell yeah I do! Do I still advocate for basic rights so other disabled folks can benefit from this advocacy? Absolutely! Am I proud of that? Yes.
Disability pride isn’t only about visible disabilities, it is about non apparent disabilities as well. From ADHD, to Endometriosis, to Celiac Disease to, Autism to Rheumatoid Arthritis to POTS, to Lupus, disability visibility deserves to be seen as a prideful thing in our society so that EVERYONE can share their stories without shame.
Pride
My most memorable moments of disability pride are when life feels equal. When I know that I am seen by my loved ones and I don’t have to ask for my needs to be met because they now see me for my disability and for my chronic illness, they see my Body Grief and they see me fighting for equity.
Burdenless
See, as a wheelchair user and someone with a service dog, I know how much space I take up quite literally. I am acutely aware of how much energy it takes to get ready to leave the house, to get my gear into and out of the car, to load the dog, to then check to see if there are sidewalks, to see if the places we are going are accessible, to see if they will make a fuss about my service dog. When it comes down to it, it’s much easier to stay home, hence why so many disabled people do stay home. But I refuse to do that, I am a lover of life, so I get out, but I am not unmindful of the work and burden of my disability to myself, my loved ones and the inaccessible world in which I live.
That is why I feel at such peace and pride when I have a friend, partner, family or member in the community see me, and without the blink of an eye find accommodations, find space, find time and find empathy to see me as equal. Whether that is they make a reservation at an accessible restaurant without asking me, or organizing accessible rides, or making sure no one offers to ever “pick me up out of my wheel chair” for a few steps.
“I could come up with grandiose moments of pride and joy for you but the most memorable moments are ones when I’m clinking a cocktail at an accessible restaurant with my friends who sees me for my disability without shame, burden or reminder of my needs.”
And if you are still struggling with the concept of ableism or disability pride at this point and see this as me playing victim or me and my counterparts advocacy as “complaining” then I ask you this one question.
Would you be able to sit in my wheelchair for a day and do your daily tasks, your housework, your job, your parenting, grocery shopping, and then embark downtown Charleston, SC with your mobility service dog alone, without a car, in chronic pain, (remember I am only stating facts here), would you be able to answer the questions “what is wrong with you?” “why do you need that dog?” or “there are three steps into the building, but we can carry you in, and then out, but the bathroom isn’t accessible.” at several locations, and not just survive but be PROUD. Would you be able to do this?
And I ask you this question to exercise your empathetic mind beyond your personal traumas, beyond the stories that have hardened you. I use “YOU” as a term that means all of us. I think we all have internalized ableism, I am constantly learning from other disabled folks about my own ableist beliefs and I am learning from my own disabled body every single day. The point being, that the disabled community isn’t considered human. Animals have more rights than we do. Hell. We can’t even go to the bathroom on planes yet! But god forbid we open our mouths about it…then we are. complaining…not advocating, whining. So let’s exercise that empathetic muscle!
“Could you spend a day in my chair and still be proud?”
Because that is what society expects of disabled humans day in and day out, and if we advocate, for any bit of accessibility we are seen as victims, or complaining. If we use our mobility aids, which give us freedom, we are seen as objects, disgusting, a burden, and also invisible at the same time.
All of that to say, is that this is internalized ableism at work. We can chisel away at it by celebrating disability pride month and pridefully supporting disabled individuals all year long!
Community
My day becomes a whole lot brighter every time I meet a disabled person, because I know we will connect on some level. I know that we will understand one another. The resilience, the microaggressions we face on a daily basis, the adaptations we use, the creativity we need to just survive, the empathy and patience we need to exist in this world, I am PROUD to be a disabled person because of that. I am a part of a beautiful community of disabled individuals and I wouldn’t trade it for anything!
If the curb cut effect rings true, which it has for me in every facet of my life, then I know if we celebrate Disability Pride from here on out, more and more disabled people alike will have moments of pride and joy just like this and therefore EVERYONE will benefit!
Happy Disability Pride Month Y’all!
With Gratitude,
Jayne
Wow! Thanks Jayne!!
Looking forward to reading your book.