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JULY
Disability Pride Month
(NOT my naming choice)
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NOTE:
updated July 2021
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I live/rent in a 5th floor loft owned by
Artspace’s Northern Warehouse
(managed by Perennial Management)
in Lowertown St. Paul, Minnesota.
The building states it complies with the federal ADA laws.
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The elevator is down, not functioning, on a regular basis
– thus the building is NOT accessible on a regular basis.
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I cannot take stairs.
I am victorious
– having prevailed over 56
orthopedic reconstructive surgeries since birth.
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Of my decade living
in Artspace’s Northern Warehouse,
a federally subsidized housing program for artists,
the last nine years were challenged with
annual consecutive major reconstructive surgeries.
Wheelchairs/ crutches/ walkers were absolutely necessary after each non-elective surgery.
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For example:
during 2020 and 2021,
the elevator was down for several weeks.
The St. Paul building code states an elevator
must be installed in a federally subsidized building.
ONE word is MISSING: a WORKING elevator!
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Therefore,
Northern Warehouse tenants are NOT provided rent adjustment
when the elevator is down!
Artspace and Perennial Management are very aware
of this egregious wording in this legal code
– as well as their attorneys when tenants seek reparations!
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During the times of an inoperable elevator,
I am imprisoned in my loft as well as other tenants/artists
who live with / navigate physical challenges.
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The entry below has been viewed
over 1K times worldwide
since its original publication!!!!!
A truth nerve was touched…
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disABILITY = disRESPECT
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I had a very drawn out and a very diss experience
when ordering a rolling walker with brakes, seat, basket and in the color black
from a local and major health care provider and home equipment company
which was inconceivable in such a niche business
-a testament of aspersions cast on humanity.
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I was so grateful for specific individuals*
from my health insurance company and orthopedic surgeon’s office.
The company learned to acknowledge and honor their client base.
Their client base is the consumer, thus their income.
The narrative I had with the company was not intentional malice or bias,
it was the usual: lack of comprehension and knowing the lives of others.
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WHAT IS HAPPENING WITH MY TOTAL HIP PROSTHETIC
INSTALLED 26 MAY 1999 BY THE AMAZING GRACE OF
DR. RODNEY H. PETERSON:
Autoimmune response that is progressive as the prosthetic deteriorates:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2600070/
4 August the Mayo Clinic surgeons conducted a roundtable on my case.
Pray that they can DO something.
This will be Surgery #43.
I am an ACTION FIGURE!
I cannot do housebound any longer!
The rehab of my TOTALLY reconstructed knee conducted by the
GRACIOUS + INNOVATIVE DR. MARK HELLER
on 27 September 2012 was almost fulfilled!
Grateful to those who took me OUT into the WORLD.
YOU know WHO you ARE.
CHERISHED.
Thank you.
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The diss of disability.
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Lets do
differently abled.
It is an action, not a label that confines.
It is a paradigm shift.
It is a social construct.
It is a conscious definition shift.
The use of stating BLUE ZONES
rather than “handicapped” parking.
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USE A
WHEEL SYMBOL
on the parking signs
rather than a wheelchair
to designate a parking space.
The invention of the wheel was a conceptual breakthrough.
Not all differently abled individuals use a wheelchair.
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disABILITY = disRESPECT
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I know bias.
I know prejudice.
I know invisibility.
I know second class.
I know avoidance.
I know mocking.
I know disdain.
I know ridicule.
I know shame.
I know stares.
I know tinsel.
I know denial.
I know cold water.
I know exclusion.
I know dismissiveness.
I know shell games.
I know being marginalized.
I know betrayal.
I know being sucker punched.
I know stereotypes.
I know being bound by other’s ignorance.
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I know dignity.
I know integrity.
I know courage.
I know poetic intelligence.
I know perseverance.
I know intuition.
I know the heat of intimacy.
I know prevailing.
I know accessibility.
I know improvisation is beauty, mystery and being alive.
I know faith.
I know majesty.
I know honesty.
I know dialogue of the senses.
I know the creative mind is a universe of wonder and awe.
I know oceans.
I know flights.
I know transcendence.
I know a welcoming heart.
I know how to discern and build trust.
I know authentic intimacy.
I know truth telling.
I know how to dance.
I know gold.
I know freedom.
I know when I am being seen for who I am.
I know when I am loved for the discovery of who I am:
an unfolding morning glory.
I know improvisation is the art of being alive.
I know love by another’s offering the genius and grace of being present.
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Can you play the violin equally to Itzhak Perlman?
No?
Does that mean you are disabled?
Or, does that signify YOU are differently abled?
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Itzhak Perlman contracted polio as a child,
and uses mobility equipment to depart and arrive.
Perlman contracted polio at age four.
He made a good recovery, learning to walk with crutches.
Today, he uses crutches or an electric Amigo scooter
for mobility
and
plays the violin while seated.
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President Franklin Delano Roosevelt had polio,
and could not walk unassisted.
Winston Churchill, who admired him so, always agreed to be photographed
sitting with FDR, rather than standing, in official photographs.
THAT is an example of an abiding friendship and empathy.
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Artist Frida Kahlo experienced a devastating,
life defining accident as a young woman.
Her soul was brilliant, wild and free while her body was incarcerated.
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Ballerina Tanaquil Le Clercq,
the muse and wife of George Balanchine,
was suddenly paralyzed by polio while on European tour,
and lived the next decades of her life in a wheelchair,
unable to move her legs and arm.
Ballet dancers “are like rare birds, seldom glimpsed,
who remind us of the evanescence of all things,
most of all physical beauty and the casual grace of youth.
Therein lies a primal attraction of ballet:
its evocation of the ecstatic moment is as fleeting as it is haunting.”
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Don’t ever think you know someone
without you getting to know them.
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It is more about you breaking open
to welcome the presence of the other.
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THE LITTLE PRINCE
The story of the Fox and the Little Prince is a touchstone of authentic love.
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It takes time to build trust and time to get to know another person.
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Over time, we become fond of one another.
We grow affectionate one toward another.
We begin to depend on that person and they us.
This is a bond that is precious and fragile.
And we are now responsible for the other person
because
we have encouraged them to depend
on our being there for them.
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This is the chrysalis and bloom of all my significant relationships.
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We must build trust, accept and live up to that trust,
and accept responsibility for our part of the relationship
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Dr. Mark B. Coventry, my beloved surgeon, collaborator and life template
DR. MARK COVENTRY
SHAPED MY BODY AND SOUL
AND
ACKNOWLEDGED MY BODY + SOUL.
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I LEARNED THE TOUCHSTONE OF GENIUS AND CREATIVITY.
I HAVE CHOSEN MY SURGEONS WITH HIS TOUCHSTONE.
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HE ASKED ME TO MAKE TWO PROMISES
TO HIM
BEFORE HIS SOUL
WENT OVER THE RAINBOW:
“PROMISE ME TWO THINGS:
ONLY
LET THOSE WHO HONOR AND RESPECT
YOU COME NEAR
AND
ALWAYS
REMAIN AN ARTIST.”
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I am an artist.
I breathe the same oxygen as you.
I am preparing for surgery #43.
I want the black walker, NOT the blue or red one you want to sell me.
I chose the black walker because it is elegant.
I did not choose my body.
I am human.
I will not sit in the back of your bus.
I will be served at your counter and served what I ordered.
I will drink the water you drink.
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I will not assuage your guilt, wash away your shame of me and go away
because my physical presence makes you feel uncomfortable.
That is about you.
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Walker SELFIE
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* My gratitude is overwhelming for Katherine and Kim
of Blue Cross Health Insurance,
Barbara and my beloved champions of Dr. Mark Heller’s office,
and Jill, my amazing grace physical therapist.
And, the astounding singers in my life and in my Tuesday choir practice…
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Their HEARTS see.
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Beethoven’s Ode to Joy from his Ninth Symphony
He created this majestic vision of a shared humanity in his mind,
NEVER to actually hear his creation of sublime beauty due to his complete deafness.
He was mocked as his deafness shut him out of the social world.
He was given the divine conduit to the ocean
of the light and darkness of humanity.
He remained true to this weighted gift of creation.
Yet, his soul knew how to create and access
sublime beauty and grace.
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When Wheelchairs Are Cool
PLEASE READ THE COMMENTS!
SPECTRUM OF TWO SEPARATE WORLDS.
This article opened up a worldwide discussion and testaments of living.
Below I included a few of the comments, which were more authentic than the article.
LOS ANGELES — LAST week, the celebrity gossip site TMZ posted pictures of
Justin Bieber in a wheelchair. He was not at a hospital. He was at Disneyland. As everyone knows, Disney patrons in wheelchairs get to cut to the front of the lines. But as a dispute flared over whether this was Mr. Bieber’s intent, becoming a trending topic on Twitter, one fact remained unassailable: I was there first.
One of the great perks of being in a wheelchair — as I have been since age 4 — is being able to cut lines. Sometimes people let you go ahead of them at the grocery store. Sometimes theater and sports arena box offices give you discount tickets. When I was a kid, I often got backstage passes. In short, you get to take advantage of others’ pity — or at least their desire to keep things simple and not cause a scene. You get treated like a V.I.P. You get treated like Justin Bieber, except without the screaming fans.
The teen heartthrob’s publicists said that he was just resting an injured knee, not trying to pretend he was, well, like me. But I prefer to think otherwise. After all, they also acknowledged that even without the wheelchair, he would still get to circumvent the endless queues, to avert a riot. The point is that he was not afraid to be seen in a wheelchair, which, to me, is a point for my team.
I’ve never pretended to be in a wheelchair to curry favor, of course, but I’ve often felt that I can play the disability card for all it’s worth. I have, I confess, used it to hustle my kids through Disney lines, even though I knew full well that I wasn’t actually going to get on the ride myself.
Besides, sometimes you can’t help it. People offer you stuff. Strangers smile at you, give you a thumbs-up, pat you on the shoulder and say, “Good for you for being outside today!” (I can never quite decide whether that’s complimentary or condescending — or both.)
The mantra of disability rights is “no pity.” Yet the truth is, taking advantage of one’s disability — or rather, of other people’s solicitousness — is one of the true joys of life on wheels. When I was a kid, before equal-access laws attempted to level the playing field, I often got into movies free. I never asked for it, but I never refused it either. “I’ll just stay in my wheelchair,” I sometimes said, as if it were a consolation for not taking an actual seat from a paying customer. (Still, I had my limits. When sweet old ladies offered to buy me candy or a cookie, it was decidedly creepy. I never once said yes.)
This kind of cloying generosity was a great source of laughter when I was growing up with spinal muscular atrophy. My older, nondisabled brother and I used to joke that if we were ever orphaned, or simply needed some extra spending money, we could clean up by begging on street corners. He would accost passers-by while I would act, well, as handicapped as possible, moaning and drooling and contorting my face. Sure, this gallows humor was a sort of defense mechanism. But the constant clash between what others thought they knew about me just from glancing at my skinny, floppy, wheelchair-riding limbs and what we actually knew about me — that I was a smart, alert, regular guy who happened to require a lot of assistance — occasioned much familial hilarity.
Now I know better, of course. It wasn’t really funny. And if I want fairness and equality, I have to pay the price — even if it’s full price.
But many well-meaning able-bodied folks remain frustratingly ignorant about people with disabilities. We even have a term for it now — “ableism” — though I’m not sure how much it helps. People may know that it’s wrong to exclude or underestimate the disabled, but I fear they’re rarely clear on exactly what that entails or how to behave. There is still something hopelessly “other” about folks with disabilities. Wheelie Justin may be a hopeful sign for the future, when the very image of disability no longer stigmatizes.
I’ve long believed in disability pride, a.k.a. Crip Cool (there’s even the #cripswag hashtag on Twitter). To me, that has never meant being an awe-inspiring overachiever, someone who succeeds despite a disability. Rather, it’s the opposite — someone who embraces his or her disability and isn’t afraid to show it. Wheelchairs can be fun. Voice-recognition technology is a blast. Vans with automatic ramps are awesome. And don’t forget our coveted parking spaces. All of which help mitigate the bad stuff.
So go ahead and play disabled. As long as it’s done with joy and respect — not to tease or poke fun — I won’t be offended. Just don’t do it for the freebies, which are harder and harder to find these days anyway. Do it as you do anything else, because you think it’s cool.
And if Mr. Bieber wants to give me a call, I’d be happy to show him how to pop wheelies.
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ELEgancE #12 Catherine L. Johnson 2019
Philip Bither / Henry Threadgill / Michelle Kinney (CLJ)
Henry Threadgill / CLJ / Anthony Cox 
Anthony Cox honoring Henry Threadgill on his birthday 
Anthony’s arrangement of Threadgill’s ‘Paper Toilet’.
CATHERINE L. JOHNSON 