Bethany Harrup

It’s Never Okay to Accuse Disabled People of “Faking”

Posted on August 5, 2021June 13, 2023 by Bethany Harrup

For nearly 2 years I have watched a hateful group of cyber bullies grow in the dusty corners of the internet, a forum of people attacking and degrading those who were just reaching for support in the midst of living with a disability. The group’s main purpose? To find and expose people who they believe are “faking” their disability on the internet.

You don’t need to do anything particularly wrong to be accosted by this group. You just need to exist.

Their accusations are made with scant evidence. With little crux to their crusade, they are compelled to find the “proof” they need to justify their actions. They dissect social media feeds, pulling from posts written decades ago. They pressure people to share health information in an attempt to “prove” their story and thus get removed from their “blacklist” of “fakers,” but it’s never enough.

They publicly belittle people with disabilities who are active on social media. They destroy their reputation or attack endlessly until the subject is forced to walk away from the internet altogether. Then they move on to their next victim.

I became their next victim.

For disabled people, it can often take years of effort and persistence to fight society’s ableism and grow any sort of audience on platforms like Twitter and Instagram. We frequently share personal, sometimes deeply emotional, aspects of our lives to bridge the gap between disabled and non-disabled communities.

The thing is, just because you share your story in a public venue does not mean people are somehow privileged to extensive information about your health. In fact, for the sake of safety and mental health, most people who run larger disability social media accounts post very little about their health, though there are a few out there who frequently share updates. Those accusing people of “faking” claim these health updates “don’t make sense.”

I never expected to be accused of being a “faker,” and it happened so suddenly I felt as if I didn’t even have time to brace myself. I deleted accounts and changed some passwords. I made a rule for myself never to go and read what the cyber bullies said about me and told my friends not to share details with me. I tried to protect myself, but these measures were like paper walls against a hurricane.

Even though I avoided engaging, a lot of what was said came back to me eventually, in the form of various hateful comments and messages. People found ways around my security measures with throwaway accounts and direct message requests.. I woke up to comments telling me I was disgusting and demanding I delete my account. They attacked my weight, hobbies, writing, and anything else within reach.

Besides being appalled that a group of people focused on accusing others of faking their disabilities exists in the first place, it’s a special kind of blow to realize that most of society doesn’t care about the harm it causes to be accused. It can lead to unnecessary anxiety for some. And when the burden of these claims of faking are too much, most disabled accounts are forced to simply disappear.

Some of the most amazing accounts I follow and friends I’ve made have had to walk away from the online community as a result of the cyber bullying. Nobody is standing up for us, for our voices and our stories. No one should be afraid to post health updates on social media. We shouldn’t have to hide our stories from the public. This is blatant ableism.

Disability is an aspect of our lives that impacts us every day, and social media gives us the chance to connect with others in similar situations. So why wouldn’t we talk about it? And why shouldn’t we have the freedom to choose what we do or don’t share? Not only do these actions connect us with others, but they also introduce us to accommodations and help that we might otherwise have never known about. They are a vital aspect of thriving with a disability or chronic health problem.

Ultimately, cyber bullies accusing people of faking their disabilities are the manifestation of society’s inability to understand disability. For most, the choice to leave social media after being attacked was the only thing to bring them peace, but I have the opposite problem. While it may be easier to stop posting, I know that would simply be giving these people what they’ve wanted all along, and I’m done with that.

So I will continue to post and be as active as my health allows. Why? Because I will not live in a world where people insist on disbelieving disabled people. I refuse to let anyone silence my story.

Activism and Advocacy

About

Bethany Harrup

Bethany Harrup is dedicated to highlighting the trauma and emotional pain that so many chronically ill people experience in their lives – a plight she knows all too well, having been diagnosed with a myriad of disabling, life-long conditions. She works mainly as an educator, using Instagram and her writing talent to make waves.

About Rooted In Rights

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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We Can’t Let Our Guard (Or Our Masks) Down

Posted on May 17, 2021June 13, 2023 by Bethany Harrup

Recently, I overheard my father telling my husband about how he had quit his gym membership because they were requiring people to wear a mask during workouts. His list of reasons as to why this was uncomfortable for him was lengthy, and his belief that COVID-19 isn’t actually “that bad” did not help the situation. I hoped there would come a point in his argument when it would all make sense, but it never happened. And I never spoke up.

I don’t know if my father even realizes that I know the whole story now. Maybe I should have said something, but what? What could I even say to such flagrant disregard for safety? How could I logically express my concern to an illogical premise? But staying silent hurt and there was an ache in my chest for the rest of the day. His story stung; it rang with a truth I didn’t want to face. It felt as if my dad had come to me and said, “My comfort is worth more than your life.”

When COVID-19 came on the scene, I was just beginning to emerge from an over 5-year-long stretch of isolation. I was reliant on masks to keep me safe from germs and fragrances. I couldn’t leave my house without emergency medication for scent-based anaphylactic reactions. It was a lot of work to leave the house, but usually worth it.

Then, the world stopped and so did my life.

Suddenly, I was isolated again. Locked in my room, things felt no different than they had been for the past year I spent bed-bound, except for one change. My family members were all home, too. They worked from home or not at all and followed isolation rules as much as possible. It was a fight sometimes to get them to take things quite as seriously as I did, but we managed. In the end, everyone agreed to the rules – to keep me safe.

We avoided other people, creating small “safe” pods of family, sometimes friends, and risking interaction only with medical providers that we had to see. For those who are part of the small pods we make, we depend on them to be just as careful as we are. We have a mutual agreement to protect ourselves so that, in turn, we are protecting all of us. This means being quarantined properly, vaccinated, and wearing proper protective gear, like a mask. By limiting unnecessary exposure to people, getting vaccinated, and not letting your guard (or rather, masks) down, people who are part of pods enable human interaction that people with chronic illnesses like me may not otherwise have. You are saving our lives in more ways than one.

The day I realized that everyone I knew needed to wear a mask at all times, my stomach dropped. Uncomfortable, not fashionable, too lazy, too forgetful, too difficult to breathe, can’t wear make-up…the list of excuses is endless but the outcome is the same. Some people simply will not wear a mask.

There are times when a mask is not a viable protective option, such as meal-times, but many people go around all the time with improperly fitted masks or none at all, no matter how you explain the risk to them. Moreso now, with the introduction of a vaccine, people are choosing to go maskless. But that is how this virus spreads; it sneaks up on people.

I am high-risk. Even now, as the world takes in a communal, maskless, vaccinated breath, people like me remain trapped, curtains drawn closed in our quaint little bubbles, hoping the graph keeps going down.

Not washing your hands, going maskless, interacting with others unsafely, not properly cleaning items like cell phones and TV remotes–these are all choices that could expose me to the virus and increase the likelihood of an outbreak amongst my “safe” social group or directly infect my already sick body. The problem is that what may amount to nothing more than the sniffles for some people is fatal to others, and you won’t know which is which until it’s too late. Ultimately, every time my father goes to the gym and doesn’t wear a mask, he is putting my life at risk. The blunt truth is that these actions could kill me.

But it’s not just me who could get in my father’s crossfire of germs. His bodily fluids can easily contaminate equipment and hang around for hours after he leaves, spreading whatever germs he has to strangers who may use the equipment after him. Further, it’s not just my dad who has been breaking the pod seal. It’s the men at my husband’s job that play maskless poker every lunch break or the cashier that has her mask pulled down below her chin, uncovering her nose. It’s the person who says it’s “just allergies” then proceeds to sneeze and cough uncovered.

But learning about the very real consequences does not guarantee diligence in the protective protocol. Nor has loving me done much to change my father’s opinion on the gym’s mask rules. Even so, I will continue to advocate for taking precautions, because, like a wildfire, this virus is angry and catastrophic. All it takes is one ember – one misplaced droplet of sweat or untimely sneeze. Ignoring the dangers and downplaying how easily it can still be contracted feels like a stab in the back to the chronically ill community that has lost so many to COVID-19. It hurts, because it shows us how undervalued disabled lives can be. You can’t ignore that cold truth. Please wear your mask, because you are saving lives every time you do.

Health

About

Bethany Harrup

About Rooted In Rights

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Why and How You Should Honor Disabled People of Color Day

Posted on February 3, 2020June 13, 2023 by Bethany Harrup

Makahla

By the age of 23, I had grown accustomed to the smell of antibacterial soap, waiting rooms over capacity, and physicians in every specialty. I’d mastered the art of being a professional patient. I slowly built a resistance to doctors’ offices and the usual care I received there, not recognizing the nuances of my life compared to my peers.

While most kids were playing sports or taking classes they enjoyed, I could be found daydreaming of anywhere but another doctor’s office. To most, I was the weird kid that seemed to live in a bubble. If anyone in my class was sick or a virus was going around, I was forbidden from school, so I had to stay home to manage what I could on my own. Life was spontaneous due to my ever-changing physical health, though my mom did her best to give me a sense of normalcy in very trying times.

In my younger years, my mom often took me and my cousins on roadtrips. During these excursions, we got to explore and experience new places, and my mother used the time to teach about America and humanity. These new sights encouraged me to look at the world from a different perspective, leading to a better understanding of the change I hoped to see in my lifetime that would impact generations to come.

Bethany

I am a plus-sized, almost distractingly short young adult with a handful of chronic health problems. Although I used to have dark, tanned skin from days spent at the beach and features that easily expressed my ethnicity, I now bear more of a resemblance to my very white dad.

My mom moved to America from El Salvador when she was 11 years old. At 20, she was married, planning for her first child, and an official American citizen. But there was still a lot about American culture that she could not reconcile in her mind. While her peers rushed to do the doctor for every ailment, my mom stuck by what she had been taught as a child: there are only three ways to treat illness–lime juice, Vick’s Vaporub, and prayer.

She deviated from this belief only a handful of times. Her main complaint was almost always pain. She would make doctor appointments only when the pain was too bad to do much else other than lay in bed. They ran tests she couldn’t afford that always came back normal. The doctor would shrug, saying, “some people just have bad backs,” and send her home.

My mom found all kinds of excuses to explain the unhelpfulness of the medical world, from money to time constraints, refusing to look at the most obvious reasons. Discrimination. Racism. Medical neglect.

Makahla

I still remember my first visit to the Lincoln memorial. Watching the diverse group of people buzzing throughout the monument while learning about the men and women who changed this country at its core left an impact on me. These trips encouraged me to pursue a life of integrity and valor. I learned a lot about civil rights and history, but somehow skipped the course on how her very existence could make her feel inferior. This turned out to be the topic I’ve become the most passionate and outspoken about: the challenges of receiving equal healthcare in America as a minority.

Bethany

As a child, I was taken to the doctor for a host of symptoms including headaches, weakness, fatigue, and pain. Each time, the doctors dismissed my mother’s worries. It took 17 years before I received a diagnosis that could prove these daily discomforts were real. I thought, that because my symptoms had a name, I would finally be free of scathing doctors and shrugged shoulders.

But it didn’t end up that way.

Life-saving medications have been withheld, simple tests denied, and skepticism laced through conversations. Every medical interaction feels less like an appointment and more like a trial wherein I have to “prove” that I really am sick. If I can’t make my case, I could die at the accusatory hands of modern medicine.

My stories of neglect are raindrops amongst a hurricane. A quick search online reveals a higher death rate amongst black mothers. Dig a little deeper and find medical care denied to immigrants and anybody incarcerated, a population which is comprised mostly of colored individuals. Even doctors themselves are less likely to be hired based on their ethnicity, and a portion of medical students actually believe that people of color (POC) experience pain differently and therefore don’t need the same amount of medication that would be given to their white peers undergoing the same painful medical process. It was time for a change.

Bethany and Makahla

When we connected, it was immediately evident that we had a mutual passion for dismantling antiquated beliefs in medicine.

Our initial conversations led to much bigger discussions of how we wanted to make change in the areas of healthcare and race relations. So, we began to formulate ideas on how to change the narratives surrounding these topics and how to begin getting stories like ours recognized, moving beyond the stigma that envelops the disabled community. We felt compelled to do something. So we did.

February 7th, 2019 – The first Disabled People of Color Day

We name our mini-movement Disabled People of Color Day and encouraged people to post on social media using #DisabledPOCDay. We asked participants to share five of their favorite social media accounts run by disabled people of color. This seemingly insignificant act served a valuable purpose: to show just how difficult it can be to find POC represented in what should be the most diverse community in the world. Most people did indeed have trouble finding enough accounts to post.

This was just one day. 24 hours. It will never be able to contain all of the suffering that medical racism is responsible for, or bring back the lives that were cut short by a doctor refusing to look beyond their personal racial biases. Though the past can’t be altered, it can be honored. It can shape the future.

This year, you can follow the movement on Instagram @disabledpocvoices. we are asking those recognizing #DisabledPOCDay to do more than share accounts they love. We are asking people to share their stories, amplify the stories of Disabled POC who are speaking up, or share haunting tales of those who have passed away from this neglect. Every disabled person struggles to receive good healthcare, but it’s important that we recognize the pain so many disabled POC have endured solely due to the racism that has been allowed to pump through the veins of modern medicine for far too long.

Race and Disability

About

Bethany Harrup

About Rooted In Rights

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