Gambling On Humanity With An Invisible Disability

Gambling On Humanity With An Invisible Disability

– By Lainie Ishbia

It was our last night in Vegas. My husband went off to play blackjack, and I beelined to MY Wheel of Fortune machine, hoping to recoup my losses with a few spins of the wheel.

I was on a roll with daydreams of sipping champagne with Vana White, when all of a sudden I heard, “active shooter.” and all bets were off!

People everywhere began screaming hysterically and running past me. My whole body was shaking; I could hardly breathe. My brain kept yelling,”Run, Lainie! Get the hell outta this casino!” I wanted to run so badly, but my body wouldn’t let me. I didn’t know what to do.

Our natural instinct is to flee from impending danger, but sometimes our instincts don’t match our bodies.

I’ve lived with an invisible disability for 52 years, and this was the first time I’d ever felt utterly crippled and powerless.

Fortunately, it turned out that there was never an active shooter in the casino. It was all just a horrific mistake, false reports of gunshots had triggered mass panic in several area hotels.

Had it been real, I’d have been a sitting duck, with the additional threat of being trampled by strangers expecting I could run and keep up with the crowd.

I was born with a rare inherited neuromuscular disease called Charcot-Marie-Tooth.

From just looking at me, you wouldn’t know that I’m wearing leg braces underneath my clothing.

Without them, I’d topple right off this stage and you’d assume…

I know I’m not alone.

Most of us have something invisible, whether it’s underneath our clothing or behind the masks we wear every day.

Imagine living with a secret that affects almost everything you do.

Imagine how isolating it would feel to never share your secret.

For those of us with invisible disabilities, revealing our secrets can be a big gamble, and not a fun slot machine kind.

It’s like putting all the cards you’ve been dealt with in life face-up, and then betting it all on humanity.

That’s how it often feels for the 61 million adults in the US with disabilities.

Look around. That’s 1 out of every 4 of you.

You’ve probably seen us rolling by in wheelchairs, walking with canes and service dogs.

Maybe you’ve even seen some of us running marathons with missing limbs.

But, have you seen the 80% of us with invisible disabilities?

Of course not! How could you? It’s not like we’re all wearing matching t-shirts at Disney!

We are a club.

Are you a member? Have you used a guest pass and joined temporarily after an accident or illness?

Odds are most of you will join our club at some point. We have rolling admissions & we’re the most inclusive club around.

We have members with everything from MS, diabetes, vision loss, and chronic pain, to lupus, ADD, depression, and nowadays, long COVID.

You may not always see them, but our disabilities, and the challenges of living with them are real.

A big one is deciding how, who, and when to disclose our disabilities. And, if even doing so is worth the risk.

I kept my disabilities a secret for most of my life.

Growing up, I wanted blonde hair and a perfect body like 80’s icon Pamela Anderson on Baywatch.

I’d sunbathe on sheets of tin foil for hours with bleach all over my hair, but I couldn’t make it blonde. I also couldn’t erase my disability and have a perfect body like Pam’s.

Ironically, I learned recently that Pamela actually has large scars in real life. She often lied about them and always covered them with makeup. Even a playboy centerfold has something invisible!

Before accepting I needed tleg braces, I’d fall a lot & my disability was noticeable. Strangers would ask, “Why are you walking funny?”

I’d respond with a lie like, I’d been injured skiing, something I thought sounded cool, but could never do.

I didn’t know then that those unwanted questions were my introduction to ableism in our society.

Have you heard the term “ableism”?

Yep, another “ism”. But, this one’s discrimination and prejudice against the largest minority group in the world.

Ableism can be overt, like when institutions fail to comply with the ADA & other disability rights laws.

But, in our everyday lives, ableism manifests in less obvious and often unintentional ways.

We hear comments like, “You’re too pretty to use a wheelchair!”

We get unsolicited advice like, “Have you tried Keto? It cured my aunt’s MS.“

And we’re questioned whether our disabilities are even real. “But, you don’t look sick!”

College student Lexi Basken shared her experience after parking in an accessible spot. Lexi returned to her car one day and found it plastered with signs accusing her of faking her disability. One read:

“There are legit handicapped people who need this space. We’ve seen you and there’s nothing handicapped about you. Your tag must be fake. We’ll make every effort to see you towed for being such a selfish, terrible person.”

At the time, Lexi was undergoing treatment for a brain tumor.

When you’re met with judgment and ignorance, it can trigger internalized ableism.

You think, “I look fine, so why don’t I feel fine?”

Given the stigma, why would anyone risk the gamble of disclosing their disability?

It took me 46 years to disclose mine.

I showed the entire world my hand when I launched my website,Trend-Able. I posted photos of myself wearing leg braces and told friends and strangers that I live with disabilities.

It was scary being so raw and vulnerable. I had no clue how others would react.

My gamble paid off! “Coming out” was not only cathartic, it strengthened my relationships. People came out of the woodwork to tell me about their own invisible challenges.

5 years later, I’ve helped countless others like myself embrace their disabilities with shoe, fashion, and confidence-building tips.

In order to erase the stigma of disability, we need more of us to share they’re card-carrying members of our club. And, we need everyone else’s help to make it less risky to do so.

Why? What would the payout be?

People with disabilities have innate skill sets that brands, companies, and our entire society are missing out on.

We’re expert organizers and planners because we have to be.

Imagine living in a big city like NYC and having to navigate public transportation; accessible public transportation? That’s like earning a PHD in planning and logistics.

We’re also expert designers and inventors. We discover workarounds for everyday life in a world that wasn’t designed for us.

Electric toothbrushes, audio books, phones, and keyboards – All invented by people with disabilities.

And, you know that speech to text technology that allows Siri to remind you to call your mother-in-law? You can thank us for that one too!

Imagine all the potential new gifts we could bring to the world if we were all thriving as our authentic selves.

In a world where disabilities are kept secret everyone loses!

Let’s all win instead with a few sure bets?

 1. Believe Us

If someone tells you they can’t do something, don’t assume they’re lying. Instead ask, “How can I help?” “What do you need”?

 2. Words Matter

Avoid disempowering and ableist language like, “He’s handycapped” or “She suffers from MS.”

Having a disability is not a tragedy. Most of us are pretty happy & just trying to live our best lives with the cards we’ve been dealt. Please don’t say “we’re inspiring” for leaving the house and going to Target.

 3. Make accessibility part of the status quo

If you’re planning an event, don’t assume that just because none of the attendees use wheelchairs, “that stairs and bathroom locations aren’t a concern.

 4. Hire Us

In every industry, in every position, and at every level. The accommodations we may need won’t even make a dent on the bottom line, but the return on the investment will be huge.

Finally, let’s stop making false assumptions

If you’ve met one person with a disability, you’ve met one person with a disability. we are all unique human beings like you.

Just as you don’t know whose struggling financially, grieving a loss, or just having a really bad day, You never know who is living with a disability

If we treated everyone with grace and respect, sharing our secrets would trigger a jackpot spin and a lifetime payout we could all share and prosper from.

Who’s ready to gamble?