Coping | Daily Life | Disability | IBD | Relationships | Uncategorized
The word screamed out to me one day while I was mindlessly scrolling through social media. This term I had never heard resonated with me on a deeply personal level. It provided a name and explanation for the leech of frustration that attached itself to me early in life. Ableism, the discrimination against people with disabilities, is so deeply embedded in our society that it is frequently overlooked, internalized, and even justified. Here are a few examples of everyday ableism and suggestions on how we can combat them.
One common form of ableism is failing to consider people with disabilities when planning events. Event organizers often think about accessibility as an afterthought to be checked off a ‘nitty gritty’ to-do list. Ramps. Check. At least one accessible bathroom. Check.
Access is hindered when accessibility is an afterthought or simple checklist. I cannot count the number of times I have needed to leave events because there was only one bathroom with a long line or because I was having a flare-up and there was no place to sit. I know people who have walked out of important speaking events because there was no American Sign Language (ASL) interpreter or because they could not get a seat close enough to see the interpreter. My friend’s mother missed her daughter’s college graduation because the school did not reserve enough front row seating for the ASL interpreter. While no harm was intended by the people planning these events, harm was still inflicted.
Whenever someone faces barriers to fully participating in an event, they receive a clear message that they are not important; they are not worth making the extra effort.
One of the most recent trends I have observed related to inaccessible events is the failure of people to live-stream events. When the COVID-19 pandemic first began, all events were live-streamed because it was an accommodation that everyone needed. As in-person events resumed, the emphasis on live streaming wanned. Some event organizers continued livestreaming their events but dismissed major technical errors. Other hosts stopped live streaming events altogether claiming that “nothing replaces in-person interaction.”
I cannot even begin to express how disappointing it is to witness this trend. A friend’s daughter with a serious lung condition missed her older sister’s graduation. A neighbor’s father missed his daughter’s law school graduation when his cancer treatment prevented him from traveling. He passed away a week later. These schools decided it was not worth live-streaming; in other words, they concluded it was not worth accommodating those who could not attend in person. They could do without.
I understand that event planning is overwhelming and it is easy to overlook accessibility issues. I also understand that not every event can be live-streamed. All I ask is that you try to make your events accessible to as many people as possible. If you are not sure how you can make an event more accessible, ask. You can even include a question about accommodations/ special dietary needs on the RSVP form. A recent alumni event I attended (Manhattanville College History BBQ) included this question at the end of the form; it made my week! Thank you Manhattanville History Department.
Downplaying or Ignoring a Condition Because it is Not Visible
Another common and often unintentional form of ableism is dismissing or downplaying a disability that cannot be seen. Many people have responded to my chronic illness diagnoses by saying these conditions are not a big deal. The first time I opened up about my severe IBD, someone said, “that’s nothing to stress about. Change your diet and you will be one hundred percent back to yourself in no time.”
Another common suggestion is to “just forget about it and move on with life. The only real illness is a bad attitude.” These comments are often made with the right intentions. People want to comfort us and reassure us that everything will be okay. However, they can make us feel invisible and weak. At one point, I began thinking that something must be wrong with me for allowing my illness to get in the way of my dreams. I cursed myself for being weaker than IBD, for letting it win. I was clearly a loser.
Instead of advising someone not to let their condition interfere with their life, remind them that they are enough. They do not need to prove themselves to anyone.
Denying a Condition
Equally as frustrating as unsolicited advice on ‘overcoming’ an illness, is the outright denial that we can have an illness or disability because we seem ‘normal.’
I will never forget the time a professor questioned how I could possibly have a learning difference because I was “a very intelligent honors student.” The accusation left me with mixed feelings. On one hand, I was nauseated that the professor had even brought up the disability status I struggled to keep under the rug (The only reason she knew about it was because I was taking an exam with extended time). The confrontation was humiliating for someone who did not identify as disabled. On the other hand, I could not help feeling a small sense of pride. I patted myself on the back for being so good at deception.
Reflecting back on this incident, I realize my pride was rooted in my internalized belief that my differences made me ‘less than.’
When it comes to IBD, denial comes in a different form. People rarely outright deny the fact that you are sick when you are in the hospital, but they love to dismiss the term ‘chronic’ from any illness.
“So, when will you be cured?” This was the common reframe I heard when first coming out about my health conditions.
“Are you all better yet?” Is a common question I hear after a medication change, surgery, or medical procedure.
There is always pressure to answer these questions in the affirmative. I do not want to sound like an ungrateful pessimist. And, maybe remission or ‘minimally symptomatic’ is the same as ‘all better?’ But it haunts me to put on a positive face while knowing that the root of the problem is still lurking beneath the surface ready to grab me by my feet and pull me under.
The balance between celebrating a medical victory while acknowledging an uncertain future is a difficult one. When speaking with fellow chronic illness warriors I have learned to use phrases like, “I am glad that you are getting some relief from your symptoms” or “I hope that this medicine/ procedure gives you long-term relief.”
So, now that I have clarified how denying and downplaying an illness or disability is harmful, I want to remind you that there are harmful ways of highlighting disability.
Using People with Disabilities as Inspiration for Abled People
We have all come across those viral feel-good stories on social media. The ones that praise people with disabilities and illnesses for doing simple things. Abled people love reading about chronic illness warriors who run marathons or graduate from law school. The stories motivate them to overcome their own challenges or become their ‘sick friend’s cheerleader.’ “The only disability is a bad attitude,” they enthusiastically chant as they go about their uncompromised life.
Again, most people sharing these inspirational stories and quotes do not mean any offense. They think they are helping and inspiring people. They might even think they are combating ableism. Nevertheless, the “everyone can do it if they try” lie is detrimental to the mental health of those who cannot. It leaves them feeling lazy and unworthy.
We cannot always rise above our disabilities, and that is okay. We are enough. You are enough.
Even worse are the stories or videos that praise abled people for including people with disabilities. I remember seeing an article about a so-called amazing husband who accepted his wife with IBD. The article infuriated me. Are people with chronic illnesses so repulsive that it takes a special person to love us? Are we so horrible to put up with that liking us is an act of charity?!
Another all-to-familiar ‘newsworthy’ story is that football star who asks a classmate with Down’s syndrome to prom. One of these ‘heartwarming’ stories pops up on my newsfeed at least once every spring. The ‘cool jock’ is praised for his selflessness as if going out with someone who has a disability is sacrificing.
I will not lie; the 18 to 20-year-old me mistook these stories for signs of hope. I would press the ‘heart’ button on Facebook and then share them. Finally, a good human being, I would think.
However, these seemingly innocent feel-good stories are essentially a punch in the gut to the disability and chronic illness community. People with chronic illness and disabilities are not your charity project!
With this said, think before you share and politely speak up when you see posts that perpetuate stereotypes. Education and awareness are keys.
Take Away Points
Ableism is present in all facets of life. This short blog does not even begin to scratch the surface; it merely provides a few small examples of unintentional prejudiced attitudes that people with disabilities face every single day. Ableism will not go away overnight. It will not completely dissolve in time for you or me. Nevertheless, we can be the generation that starts chipping away at it.