Let’s Not Discount the Effect of Ableism on Our Emotions
Those of us with myasthenia gravis (MG) sometimes blame the disease for causing negative emotional responses. But this can be an unhealthy and misguided approach.
Sure, our adverse reactions to problems associated with MG may reflect our grief in response to illness. But some negative emotions are caused and perpetuated by ableism.
Our distress may reveal built-up anger as a result of widespread discrimination. Ableism favors nondisabled people, or those whose bodies continually perform well, a reality that can be fueled by toxic popular culture and systemic violence.
Culture harbors learned and influenced behaviors, along with the beliefs of a particular group. Among other things, popular culture reflects the most widely shared view in a society of the standard or ideal for how people should behave, think, dress, relate to their possessions, and more.
Ableism is a form of culture because it includes a shared preference for healthy, nondisabled people. It is a reality in most geographic settings, exemplified by many situations that fail to accommodate disabled folks. Examples include restrooms that aren’t available in public spaces, grocery stores that don’t provide mobile chairs, and businesses that don’t provide enough accessible parking.
Systemic violence can be understood as the added stress and harm experienced by marginalized people, including those with illnesses, caused by a society’s dominating social structure and its institutions. For example, exorbitant medical care costs can make those with illness feel like society is taking advantage of them.
When we live with an invisible illness, people often judge us for the manner in which we go about managing our disease, which is crucial for our survival. For instance, we notice the expressions of disapproval on people’s faces when we use a store’s mobile assistance carts and then stand up to reach for an item. This is an example of the manifestations of an ableist culture.
Those of us with MG may use assistive devices to help conserve our energy. This is to prevent us from becoming so weak that our muscles no longer function properly. When our symptoms are exacerbated, it is incredibly inconvenient, and can even cause an MG crisis that is sometimes fatal, depending on the situation.
Another example is the response we often receive when advocating for others to wear masks in public to help protect immunocompromised people. Many will react to this by telling us to stay indoors if we want to be safe. But we have chronic illnesses and diseases, and we must go into public spaces to maintain our health. We have doctor appointments, blood draws, trips to the pharmacy, and more, in addition to frequently having to go to the emergency room.
Some people with MG can’t even tolerate wearing masks because of a weakness of the breathing muscles. Others can’t be vaccinated, either due to health concerns by medical specialists or a previous adverse reaction.
Discriminatory behavior can cause those of us with disabilities to hide our illnesses even more than we already do, and neglect our self-care, which can trigger depression.
Some cultural influences on behavior can be harmful to marginalized people. Toxic popular culture that discriminates against disabled individuals can drive us to deny or ignore our disease. We may stop taking care of ourselves because we are ashamed or embarrassed.
In response, we must all be mindful of the role culture plays in shaping our reality. We shouldn’t blame MG for causing all of our anger and anguish. We live in a world that doesn’t understand what we must do to accommodate our invisible illnesses and ensure that our bodies operate the best they can. It’s time we start fixing that.
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Susan Roberts
Thank you for writing this article. Had never heard of ableism, but your article made me think of issues associated with it. This is a good month to have read this as it is also suicide awareness month and I know many who suffer depression with this diagnosis, as with many other silent diseases.
David A Schneider
Found this article very interesting and informative.
However, the reference to forcing/advocating people to wear masks continues to be exaggerated and seems to me to be more of an attempt to control other people decisions.
I have yet to see any proven data that indicates the "normal" mask provides any substantial benefits.
Even the N-95 masks are of limited benefit unless properly fitted and properly worn.
However, I have noted the detrimental affect on my breathing when I am "forced" to wear even the "normal" masks.
Thanks for the article.
Amy C
I worked for major pharmaceutical company, their accommodations for my MG when I was first diagnosed were shameful. They wrote up all this paperwork etc and then never did any of it. They have all these policies for accommodating people they get kudos for and never actually do any of it in reality. Now I work for a small company that specializes in rare diseases and they are no better lol. We don’t live in a country that helps those with invisible disabilities.