Does Visibility Make Us Vulnerable?
Happy Disability Pride Month! But is “happy” even the appropriate word to use? It’s one of those problematic conundrums where we want to educate and remind others that we do indeed exist, have lives, work jobs, enjoy relationships, and other things that non-disabled people like to do. However, for some of us, the physical and emotional challenges, as well as the fear of being “seen,” can leave little room for celebration, especially when we’re constantly barraged with “helpful” tidbits uttered by random strangers.
Case in point…
“You’re much too young for that wheelchair, I’ll pray for you.” As if there’s an age limit for wheelchair users, and our only worth lies in our ability to walk on two legs. To the extent that we need “thoughts and prayers.” Or the “You don’t look sick” comment for those of us who look way too healthy to be disabled. I remember when my sister’s high school friend, diagnosed with Type 1 diabetes back in the 1960s, hid her awful “secret” because employers could fire you for daring to have a chronic condition. I come from a time where the word “cancer” was uttered in hushed whispers, as if saying it out loud would unleash the cancer punishment gods on whoever dared mention the dreaded “C-word”. Children in wheelchairs and adults with developmental disabilities were warehoused and hidden away. We have good reason to remain on the down-low, because shining a light on our disabilities exposes our soft underbellies and makes us vulnerable to attacks and misunderstanding. Or, even worse, the “Pity Olympics.” You know what I mean. When the person who breaks their leg and uses crutches for a few weeks assumes to know what it’s like to spend your days in a wheelchair. Or the POTS patient who is subjected to a blow-by-blow account of a one-off “episode” of low blood pressure by an otherwise healthy person. “I know how you feel,” they’ll insist. When in reality, no, they don’t.
There’s no “glamor” in being disabled. In these instances, not only does visibility not help us, but it can also piss us off when these false equivalencies erupt and the reality of our lived experience diminishes.
Society always was and continues to be Darwinian; It’s “Survival of the Fittest,” while the rest of us “misfits” get left behind. This has already worsened under the dubious reign of 45/47, where the Republican-held House just voted to cut Medicaid and SNAP, and our civil rights, fought for by Judy Heumann, the Black Panthers, and hundreds of other activists, are under blatant attack. It doesn’t feel like a time for celebrating. With each “breaking news” announcement by Aaron Parnes, I want to run into my bedroom and hide beneath the covers for the next 1223 days.
I once had a “friend” say to me, “I wish I could stay home and collect a check.” Because apparently, disability is a great way to avoid work. Still others are afraid that if they’re not completely bedridden, they’ll lose their hard-earned Social Security benefits. Children who’ve been disabled and never able to work are viewed with a merciless disdain. I’m looking at you, RFK Jr. Are these the same people who want “lots of babies”? They do realize that some of those babies will be born with disabilities, right?
So, while it seems that there is absolutely no reason to celebrate this month, maybe now is the time to get exceptionally loud and proud, and visible? Hunkering down and hiding ignites more disdain and misunderstanding. Ruthless cruelty and bullying are sadly making a comeback these days, fueled by 45/47, and especially with all the political fallout raining down all around us. There’s a lot at stake that we could suffer by speaking up, but we have even more to lose if we don’t.
Our disabilities are unique. Not everyone is able to speak up. All the more reason we should come together and unconditionally support one another, collectively reducing our vulnerability while increasing our visibility. There are over 70 million of us in the U.S. alone—strength in numbers. After surviving septic shock four years ago, I summoned emotional strength by playing Tom Petty’s “I Won’t Back Down” and Elton John’s “I’m Still Standing” over and over as I learned to walk and feed myself again. My self-perception started to evolve.
I see disability through a lens of strength because everything we achieve is fought for and hard-won. We’re constantly trying to prove our worth, and as a result, we work ten times harder than the general population. DEI doesn’t mean “less” qualified. If anything, it means “more” qualified. We are #DisabilityStrong even if we don’t see ourselves that way.
Not everyone should be compelled to speak out, or to enjoy or celebrate Disability Pride Month. To each his own and whatever makes you most comfortable. We have enough outsiders judging us all the time, so we should refrain from judging each other.
I’ll be out there this month, educating and raising awareness that people with disabilities are worthy of life, employment, travel, self-care, companionship, friendships, and a whole host of other things that make this world go round. Twenty years ago, I felt more vulnerable and afraid. Nowadays, not so much. As I often tell people, “I’m 62, disabled, and I nearly died.” I’m stubborn, and I can be deliciously petty.
Happy (or not) Disability Pride Month. May we all feel loved, valued, and acknowledged for who we are, and less vulnerable and more visible.
I see you. And you are worthy.
Jackie Duda has written for The Washington Post, AARP, Reader’s Digest, Costco Connection, and hundreds more. She is an outspoken advocate for disability and sepsis, and has recently launched a podcast, The 1:20 Pod, as well as a Substack.
Resources
Senate megabill marks biggest cuts in Medicaid history
Justice Department Remembers Judy Heumann
The 504 Protests and the Black Panther Party
With disability rights under attack, history offers hope and a possible playbook
The Parnas Perspective | Aaron Parnas | Substack
Fact-checking Robert F. Kennedy, Jr.’s statements on autism
Take it from a lawyer with a disability: Trump’s Paralympics comments were offensive
CDC Data Shows Over 70 Million U.S. Adults Reported Having a Disability
Sepsis nearly killed me. This is what it was like.
Ways to engage with the Disability Community for Democracy, Inc.
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