When I Was Shamed for My Invisible Disability – by Two Disabled People
Thirty-four years ago, death gave its first knock at my door. At age 9 after becoming deathly ill, resuscitated in the ER and then whisked to the ICU of the Children’s Hospital of Winnipeg, I was diagnosed as having type 1 diabetes. Death gave up and moved on, but this was the first of a large collection of disorders and diseases my body decided to accumulate. I am no stranger to illness, nasty symptoms, appointments, tests and procedures including: brain surgery; eye surgery to regain sight after going blind in each eye; having a gastric pacer implanted into my abdomen only to have it removed two years later due to debilitating pain; fibromyalgia and autonomic neuropathy. I could continue, but I won’t.
Let me just say this: I haven’t been medically bored, in case that was a concern. But even with all that is going on within, I don’t “look like” a disabled person. In fact, I usually look fairly well put together. I wear makeup, style my hair if even just in a neat low pony tail, and use no physical aids (other than my husband when fatigued, off balance or bent over in agony).
Born and bred Canadian, my husband and I now live in the U.K. thanks to his job. His parents came over for a month long visit and we did some traveling while they were here.
A couple of weeks into their visit, we headed to Manchester airport, destination: Venice. I was not in a good place health-wise but was determined not to miss out. I mean, it was Venice. Fatigued and with an invisible butcher knife floating around in my left abdomen, we parked, checked in, went through security and pulled our carry-on luggage to the central waiting area. My carry-on case consisted of pill bottles, insulin pump supplies and accessories, glucose tablets, blood glucose meters, snacks, batteries, etc.
On this particular day, due to pain and guaranteed travel sickness, I was heavily medicated. (“Legally stoned” if that helps paint the picture.) Just to add to the difficulty factor, our flight was delayed an extra four hours. As we sat waiting, my blood sugar climbed from medium to high to dangerously high within a very short time. My insulin pump cannula site had probably gone bad, which meant the insulin was not getting absorbed properly into my system. Weak, dizzy and in a complete brain fog thanks to the meds, fatigue and my elevated blood glucose level, I knew I needed to change the pump site before getting on the plane. Standing and tightening my back brace under my sweater, (yes, I have a dodgy back too) I said to my husband, “If I don’t come back in 20 minutes, come check on me.”
I then wheeled my carry-on towards the women’s loo. On the way, I realized there was no way I could spread out my supplies for this procedure and also keep things sanitary in a regular stall. Thankfully there was a disabled toilet nearby. With no line, I entered and opened the suitcase and began sorting the supplies I needed. My mental capacity was sitting at about 30 percent of my usual on a good day, and I had to try hard to focus on each step in this procedure. It would’ve been detrimental at best if I’d forgot to prime the pump and pushed 23 inches of air into my system instead of insulin.
Then there was a knock on the door.
“Hello! It’s busy!” I replied.
They banged on the door again. “Is someone in there? Are you almost done?”
“I’ll be out soon!” I stammered a bit louder, in case they didn’t hear me the first time.
I began to panic and tried to move faster. I hadn’t been in there even five minutes at that point.
Bang, bang, bang. “I have a flight to catch!”
Hands shaking, I fumbled with the tubing and tried my best not to drop and contaminate the needle. Pushing through the sludge of my mind, I cleaned the injection site, inserted the new cannula and hoped for three things:
1) That I had gotten it right and had not instead just instigated possible death.
2) That the violent banging on the door would stop.
3) That my husband would come save me.
I haphazardly threw my medical supplies back into the suitcase, pulled my dress down over my belly and hips and hoped I was at least 70 percent decent for airport viewing. My hands trembled; I opened the door.
Two women, one in a wheelchair and one in a mobility scooter, looked me up and down, glanced at each other and then in unison, lit into me with gas-fueled lingual flames.
“We have flights to catch! You shouldn’t be using the disabled toilet! We’ve been shouting at you to come out!”
Trembling I choked out, “I am a disabled person. I had to do a medical procedure.”
“You are disabled? You don’t look disabled! This toilet is for disabled people only.”
“I have a blue badge and had to change my insulin pump site and needed the space and the best sanitary conditions to do it in. I tried to be fast. I tried.” Dizzy, the floor shifted and I reached for the wall to steady myself.
At this point the woman in front gave me one last glare, a muttered “pfft,” and went in to use the room. Just as the second woman spat out a final, “It’s only for disabled people,” my husband arrived to check on me. He knew something was wrong, but I was upright, so he grabbed my arm and helped me back to the waiting area where I collapsed onto the seat.
I had no words. I felt defenseless, invalidated, exhausted and confused. Had that really happened?
I know misconception and assumption are alive and well, but I had never experienced them firsthand. So many times while talking with spoonie friends or reading articles online (some here on The Mighty) I’ve heard of people being shamed for not looking sick enough or incapacitated enough for the label “disabled person” in the eyes of the healthy. With the goal of being gracious and to not reciprocate presumptuousness, I have tried to give these healthy shamers the benefit of the doubt, perceiving a probable inability to relate, since we (the sick or disabled) may appear how they (the healthy or able) feel.
But this judgment from my fellow disabled community members was more than distressing.
I get that at first glance it might have seemed I was a traveler cutting corners or abusing a privilege not meant for me. But what disturbs me most is the verbal abuse I received after explaining that the privilege was actually mine to use. (If oxymoronic can be defined in one word, I think this is it.) Do I want this “privilege?” No thank you. Do they? I highly doubt it.
I’m not giving up hope though. I like to think when given the chance, most people like to be good humans. Maybe that visual and verbal exchange in Manchester airport gave those two women pause and instigated a new comprehension. I hope by both enduring and sharing this story, that negative moment might cultivate many positive ones, like a pot of manure bringing forth a beautiful garden of morning glory flowers. I hope that people both able and disabled will learn and grow and choose to be kind and accepting good humans.
It’s been a couple of years since that incident and I still fear getting yelled at and unnecessarily shamed when I need to use a disabled toilet or park in a disabled spot. So I just want to confirm with those who fall under the “disabled person” umbrella — aren’t we in this together?
Getty image by Ake Dynamic.