An invisible disability is a physical, mental, or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker1. Since their symptoms aren’t obviously apparent, those who live with invisible disabilities face misunderstanding, false perceptions, judgment, and ableism. This can be made worse for those who are also survivors of sexual assault and/ or rape. They continuously face situations where they need to "plead their case" about the legitimacy of their disability, and if they choose to confide in someone or report their assault, they may experience the same skepticism.
My wife and I are both live with invisible disabilities, though hers is more life-threatening. When my wife was eight years old, she was diagnosed with type 1 diabetes. Unlike type 2, which can be caused by obesity and poor diet, type 1 is an autoimmune disease that causes the immune system to attack the pancreas, resulting in the bodies inability to produce insulin. It cannot be prevented or treated, and she has to take shots of insulin for everything she eats, take slow release insulin twice a day, and check her blood sugar level several times a day, just to stay alive.
Along with the constant struggle to keep her body functional, it is also tough to afford these medications. Three companies control 99% of the world's insulin, and without explanation, they raise the price every year. The cost of Humalog, the quick-release insulin that she takes any time she eats, was $21 in 1996 and has since risen to $275 2. Type 1 diabetes also weakens her immune system substantially, caused her to have additional illnesses including Hypothyroidism and PCOS. The body doesn't always respond to insulin or sugar when trying to regulate blood sugar, and the highs and lows can be debilitating and life-threatening. Later in life, diabetes can lead to blindness, loss of fingers, toes, and limbs from poor circulation, and more. If you look at my wife, there is no visible evidence of the ongoing battle she is fighting against her own body.
I was diagnosed with Attention Deficit Disorder when I was seven years old. ADD makes simple every-day tasks very difficult to accomplish, I can read the same page ten times without absorbing any of the information, even opening my word processor to write this blog post required mustering up all of the energy I had. I consider myself to be a reasonably intelligent person, but when my ADD goes untreated my grades slip substantially, and when I take my medication regularly I get A's and B's. In fact, I almost failed High School before transferring to an independent study school that included regular one-on-one time with my teachers who understood the symptoms of my disability. I am still learning to cope with my ADD, but I have a lot of internalized shame and guilt due to the ableism and stigma associated with it.
If you look up the primary dictionary definition of Ableism, you will see something along the lines of "discrimination in favor of able-bodied people,"3 but ableism goes further than deliberate discrimination. Ableism is caused by a cultural paradigm that causes those who are able-bodied or neurotypical to have preconceived notions of what it means to be disabled, and to treat those with disabilities as "others." For example, my wife doesn't fit the archetype of what a "diabetic" should look like too many people that she encounters. Since a majority of people associate diabetes with type 2, they tend to ask ignorant questions like "did you eat a lot of sugar when you were a child?". Her diabetes was caused by her immune system attacking her pancreas, and asking her about her childhood diet implies that her disease is hers or her parents' fault. It has also led to unfair disciplinary actions at work. She is constantly sick and has to call out sick more often than an able-bodied person. Since she looks like a perfectly healthy 26-year-old, she has received countless write-ups about attendance, even though she tries to get a doctor's note as often as possible.
For me, ADD is met with skepticism and stigma. Since the severity of my symptoms can come and go, I have been told that I’m just being lazy or not pushing myself enough by employers or teachers when the quality of my work plummets. Even when I take my medication, it can feel like there is this invisible wall standing in my way, making simple things like personal hygiene or chores impossible to accomplish. My diagnosis is regularly dismissed, even in the scientific community, which has caused me to blame myself for my symptoms4. I've since learned to trust the many doctors who have given me the same diagnosis, but I’m still hurt by the actual eyerolls that I've received or the comments that I've overheard about my medication being an "easy way out."
I take Adderall a few times a week to help me accomplish tasks, and it helps immensely. Adderall is a schedule II controlled substance that is known for being abused by students and addicts. I don't abuse the drug, and I check-in with my psychiatrist monthly, yet I can't help but feel ashamed and hide the fact that I take it. It doesn't help that my university is littered with flyers for a campaign called "Rethink: Adderall Misuse…it's nastier than you think." Accompanied by a cartoon pill named "Addy" with bloodshot eyes and a screaming mouth5. I agree that this is a serious issue on college campuses, but the campaign demonizes the medication that I rely on as a student, leading to more shame and isolation.
Living with an invisible disability can cause one to feel like they are always having to convince others of the legitimacy of their symptoms, and they may have the same experience when disclosing that they are also a survivor of rape or sexual assault. Like the disability, the emotional scars left from the assault are not visible. When my wife’s mother found a Myspace message that she had sent to a friend about being sexually assaulted by a family friend, she accused her of lying and punished her. It took me years to come to terms with being raped by an ex-girlfriend because narratives on domestic violence are almost always heteronormative or masculine-dominant. In the fight to end rape on campus, we must believe all survivors, including those who live with invisible disabilities.
How do you define invisible disability? (n.d.). https://invisibledisabilities.org/what-is-an-invisible-disability/
Hua, Carvalho, & Tew. (2016, April 05). US Expenditures and Prices of Antihyperglycemic Medications: 2002-2013. https://jamanetwork.com/journals/jama/fullarticle/2510902
Ableism | Definition of ableism in English by Oxford Dictionaries. (n.d.). https://en.oxforddictionaries.com/definition/ableism
Novella, S. (2017, March 1). The ADHD Controversy. https://sciencebasedmedicine.org/the-adhd-controversy/
Manukyan, M. (2017, March 10). Adderall Misuse....It's Nastier Than You Think. https://blogs.chapman.edu/communication/2017/03/10/adderall-misuse-its-nastier-than-you-think/
AMANDA KAUBA-WHITE (pronouns: she/her/hers) is the summer Digital Fellow of End Rape on Campus. She is currently working towards her B.F.A. in Graphic Design at Chapman University in Orange, CA and is a member of the AIGA (American Institute for Graphic Arts). She has a background as a fine artist and before pursuing a design degree, she worked as a Sous Chef. During her seven year career in the restaurant industry she gained skills in leadership, time management, and creative thinking. She also witnessed instances of sexual harassment, sexism, racism, wage discrimination, and discrimination towards undocumented immigrants. These experiences made her determined to become a fierce advocate for those who experience injustice on a daily basis. Amanda believes design is more than just “making things look nice” and that it can play a catalytic role to create a positive social impact. She is committed to raising awareness of the anti-sexual violence movement through social media outreach and building a strong visual identity for EROC.
You can reach Amanda at firstname.lastname@example.org.