As you know, July is Disability Pride Month, and this year I would like to celebrate my #pride by writing about my experiences living with invisible disabilities and what I have experienced appearing abled-bodied.
DISABILITY PRIDE MONTH
This month of recognition provides the opportunity to honour and acknowledge the achievements, contributions and lived experiences of disabled people. The goal is to promote inclusivity, raise awareness and challenge the stigma and neglect often associated with disability. It creates the opportunity for open dialogue and visibility for the disability community.
LISTEN TO DISABLED PEOPLE
Disability Pride Month is a platform for disabled people to embrace themselves, advocacy for disability rights, and educate communities on the importance and normalization of accessibility and accommodation in everyday life. It should also be a time for all levels of government, businesses, services, and organizations to really listen to disabled voices and strive towards a barrier-free society.
WHAT IS AN INVISIBLE DISABILITY?
An invisible disability is a disability that is not immediately noticeable. They can include mental illnesses, chronic pain/health issues, brain injuries, gastrointestinal disorders, visual impairments, etc. Invisible disabilities do not have outward signs, making it difficult for others to understand and recognize the challenges that people with invisible disabilities face.
MY STORY
Throughout my entire adult life, I have heard the same thing over and over, “I don’t act like someone with a disability,” so when I request accommodations, particularly when I am really struggling, I have to deal with people believing that I am either exaggerating my symptoms or faking them entirely because I don’t look disabled to them. My disabilities cannot be seen, but they are definitely felt, making me unwell on the inside.
Due to the judgements and assumptions that I often have to deal with after disclosing my disability status and/or requesting accommodations, I am very apprehensive about disclosing in the first place. Disability disclosure is always problematic and off-putting because people have to openly discuss their chronic health issues, disabilities and other weaknesses. Sharing personal medical problems that may impair your productivity can be challenging in a society that only values you based on your productivity. That is how I have always felt when I have spoken openly about needing accommodations in the workplace, and all that I have found is that it is 2023, and we still don’t live in a very accommodating society.
I have several disabilities. I am open and transparent about it, though in the early days of my advocacy, I was a bit naive about disclosure, figuring that I was entitled to accommodation, all I had to do was ask, but that is hardly ever the case. It has been difficult navigating through an ableist system.
Oftentimes, when I talk to people outside of the disability community and disclose my disablities, I am not believed. Outwardly, I appear abled-bodied and what is perceived as “high functioning,” but that is because I am constantly masking my symptoms, mitigating panic/anxiety attacks and/or dealing with migraines because I need to make money to pay for shelter and utilities.
My disability disclosure is often met with the standard:
“You don’t act like someone with disabilities.”
“Everyone deals with anxiety.”
“We all have ADD.”
“I get bad headaches too, sometimes.”
The worse is when my symptoms are downplayed or ignored, I get chastised when I have to leave immediately due to the onset of migraine auras. I have yet to meet an employer who truly understands or cares that I lose my vision during these pre-migraine warning symptoms. It means I have to go home straight away becase I need to be in the dark and quiet to deal with the impending head pain.
Chronic migraines, for me, are the toughest to deal with because the common assumption is that I am faking. It is very easy to tell when someone doesn’t believe me. I have actually lived with chronic head pain my entire life. Even as a child, I thought it was normal and dealt with the pain silently until I was diagnosed with migraines at 12 years old (my first experience with auras prompted a visit to the doctor).
The unpredictability of migraines with auras is another point of contention for people. I once had to cancel a 2SLGBTQIA+ presentation at a local public school because I woke up experiencing aura (yes, they happen in your sleep). I was met with frustration and hostility from the person who coordinated the event, which made me feel so much worse—that constant feeling of letting people down.
In January 2017 (because I will never forget this), I started getting auras in the early afternoon. I was supposed to hang out with my aunt and grandmother, but I got driven home immediately to rest. Unfortunately, I experienced auras for 10 HOURS STRAIGHT, and there was little I could do outside of lying in my bed and occasionally crying about what was happening. I had no idea if it was ever going to stop, or if I needed to go to the hospital and if I did go to the hospital, what would they actually be able to do for me?
I was scared and upset. Thankfully, I grounded myself by listening to episodes of BoJack Horseman until I eventually fell asleep. The auras were gone in the morning.
More recently, I was met with a misunderstanding from a cohort, who assumed I had merely had “a panic attack,” which caused me to get up and leave without warning one afternoon. I had to explain that actually my migraine auras had started, but my proclamation was met with little interest. Again, this environment that knew about my migraines as I openly talked about as it when relevant. I was educating about invisible disabilities, however, it was still insinuated that I was faking it or just being dramatic because of a “panic attack.”
I am a #PROUD #disabilityadvocate the entire reason I became a paralegal, licensed in Ontario, was to help other disabled people know their rights and that they are valued and deserve the right to work in an accommodating, accessible and barrier-free environment. They deserve respect and support in their workplaces. To help them navigate proper accessibility and accommodations. This is why I am so interested in human rights law, administrative law and upholding the actual values of the Charter of Rights and Freedoms.
I will continue to advocate for myself with other disabled people. I will continue working towards a genuinely accessible, barrier-free Canada where everyone has everything they need to live and thrive #beyourbestself
We can do much better as a society, and it can start by listening to disabled voices.
DID YOU KNOW: When I ran for Council in the 2022 Town of Cobourg municipal election, I ran as a candidate with disabilities? To read more, please go to https://www.ashleybouman.ca/advocacy/key-issues/increasing-accessibility
Relevant article: Invisible Disabilities in a Nutshell
Northumberland Queeries 