Disability Pride Month: Living with an Invisible Illness, Grief, Acceptance, and Finding a Community

The entire month of July is Disability Pride Month. It was created to commemorate the passing of the ADA (American with Disabilities Act.)

The Americans with Disabilities Act (ADA) became law in 1990. The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. (https://adata.org/factsheet/ADA-overview)

DPR is a month for disabled persons to embrace themselves, share their stories, advocate for others, and support accessibility and ADA laws. This includes people who have cognitive, physical, intellectual, undiagnosed, sensory related disabilities. This also includes disability activists and allies. It is an entire month to be proud of your disability whether it is visible, invisible or undiagnosed.

So why does it matter?:

Disability Pride Month matters because:

1) people with disabilities are the largest minority group in the world (Roughly 215% of the world population)

2) Over 65% of working adults with disabilities are unemployed

3) the world is not accessible yet

4) Just because the ADA laws were passed does not mean that we have been heard, seen, employed, or, in the media

5) Disabilities are often ignored, ashamed, embarrassed and frowned upon in media, employment, and other situations,

6) Some places do not follow ADA laws (concert venues, parking lots, schools, malls, stores)

7) I can think of so many more reasons

(Text description: Top says "Disability Pride Month,

Quote "I deserve to be heard and seen, No matter what challenges I face as a person with disabilities

Bottom @katchung)

To be honest, I didn't know what this celebration was until two or three years ago when I was an undergraduate in college. I was actually afraid to share my story about being a college student student who has two invisible disabilities and a sister who passed away that had multiple disabilities and medical conditions.

I have always been that student in school who was just there to learn. I wasn't there to teach people about Diabetes or Mitochondrial Disease or to tell people about my sister who couldn't walk, talk, or eat. I was there to learn. So, often times in school, I tried to fit in with everyone else. Whether it was on the playground or at lunch or during an after school activity, I hid my disability. I didn't tell my dance team coach that I had mitochondrial disease, chronic fatigue, and diabetes. I pushed myself to be like the other girls on the dance team. And when I joined a theater production senior year of high school, I told the director about my hearing aids and diabetes but I didn't tell any of the cast members or stage crew in case of emergency. Often times, I ran to the bathroom to give myself insulin shots since I was so new to diabetes and was diagnosed in my junior year of high school and didn't have a pump yet. I gave my self insulin before cast parties or when my class had pizza parties and hid my disability. I also never told anyone in high school that I have had hearing aids since middle school. Needless, to say I was ashamed of my disabilities and my sister who had multiple disabilities and ADA struggles going on at home.

However, junior and senior year of high school were just the beginning of my disability acceptance story. When my sister passed away in 2016 when I was a junior in high school, I raised over $1,000 for United Mitochondrial Disease Foundation (UMDF) by making t-shirts on Booster.com by selling them to doctors, family members, and nurses who knew my sister. I didn't know how big of an impact I was making on the mito community. I didn't even know how much money I was raising at the time, I just wanted to create a fundraiser in honor of my sister and a way to remember her. In order to raise over $1,000, I shared my sister's story on all my social media platforms and on Booster. I even tried to sell t-shirts to my friends, classmates and teachers. I was networking and making connections with my doctors too since I was a child mito patient back then too. After fundraising for my sister and the mito community, I was awarded The Heartstrings Award Strings award from UMDF at the annual conference. It is an award given to young adults young adults who have spent time investing time demonstrated talents, effectiveness, and generosity in helping the UMDF to continue its mission. This was only the beginning of my disability acceptance and advocating journey for myself, the mito community, and my sister. I was proud of what I had done for the mito community; and I was proud of myself for advocating for persons with disabilities.

(Left: Black and gold Heartstrings Award from UMDF 2017 symposium

Middle: T-shirt Fundraising statistics from 2017 82 shirts sold, 63 supporters, $1,609 raised,

Right: Dark green t-shirt design with light green and pink lettering. "No one fights alone, Supporter of kids with Mitchondrial Disease, Spreading Awareness about the Invisible Disease, In loving memory of Kristen Chung, A mito fighter who lost her battle)

Then freshman year of college, I felt scared, ashamed, alone, and depressed since my sister had just past away a year an a half ago. I felt scared to share my story, my disability, and my struggles with other college students because I knew that everyone at college was not going through what I was going through. A recent juvenile diabetes diagnosis, grieving from my sister's passing, family struggles, and a transition from staying at home alone to staying in a college dorm for 4 years. My parents helped me apply for a program at McDaniel College called Step Ahead. Step Ahead is a unique summer bridge opportunity hosted by the Student Accessibility and Support Services office at McDaniel to help first-year students with disabilities with their transition to college. The week long summer session included activities to help persons with disabilities with their social, physical, and navigation skills at college. It was a week where I accepted that I had a disability and everyone around me had disabilities too. And to be honest, I do not regret having my parents help me apply for Step Ahead because I think that it made me more confident and social in college as a person living with an invisible disability who lack self-confidence, I also met my best friend at Step-Ahead who is a disability advocate today and female badass,

During Freshman year I also took a seminar called Exploring Disability in the Media where I learned about the challenges, achievements, and films that people with disabilities have created. It was very eye opening since I had never learned about persons with disabilities before. I learned about laws, accessibility disadvantages in buildings, workplaces, and venues, and about successful people who advocated for the ADA in the media. This was my first experience learning about disabilities in the media and how frowned upon and neglected people can get with ADA rights and how inacsessible the world is.

For a majority of my lifetime, most of my experiences learning about disabilities were when I was around my sister's RN and LPN nurses or when my mom was making my sister's medicines. I never had access to any disability history or media importance classes when I was in high school. This is why that class at McDaniel mattered. It was my first experience learning about people who had struggled with disability rights besides myself and my sister,

Then when I was a sophomore at McDaniel College, I took a creative writing class called, Memoir and Non-Fiction Writing. I had no idea what a memoir was or how to write one and I was intrigued in writing my own. In this class I learned that my story was valid. That my experiences matter. Every week in the class there was a prompt and we were told to free write about that prompt on our laptops. Most of the time students wrote about their experiences as high school students or college freshman from the year before but I wrote about my sister because those memories were fresh in my mind, At the end of my professor helped me create a memoir full of a dozen stories about my sister, grief, medicines, chronic illness, and other topics related to my medical journey not only as a sibling but also patient with disabilities. You can read most of those memoirs or short stories on my blog under the Mito or My story sections on my blog but some of them are still on my desktop for safe keeping. Needless to say, that class changed my life too because I was able to learn and write about my story as a person, student, sibling and women with disabilities.

Most recently, I took a class at Towson University called, The History of Disabilities, where I learned about ADA laws, asylums, disability history from the 1700s-2000s, and about disability failures and success. This class was very informative and helped me learn more about the ADA and disadvantages that person's with disabilities face around the world. It made me more interested in the topic of disability history since I am part of history and the ADA laws and accommodations have not been perfected or fair for everyone yet. I think that the most important thing that I learned from that class was that I wasn't the only person struggling with accommodations, grief, trauma, rights and diagnosis.

I know that it sounds selfish but this shows how far I've come from being a secluded sibling with disabilities living with a sister who had multiple diagnosis to a person who is advocating, learning and writing about her medical journey and disabilities.

So, how does my story apply to Disability Pride Month?

The American Bar Association states that: “accepting and honoring each person’s uniqueness and seeing it as a natural and beautiful part of human diversity.”

Disability pride month is for disabled persons to embrace, uplift and empower each other through storytelling, media, interaction, speech, and writing. My story shows that I have grown and become a person who embraces their disability rather than is ashamed of it. I can thank my professors from those classes that I mentioned earlier for helping me learn more about disability in the media, rights, and storytelling.

My story is just one reason why Disability Pride Month Matters. It's my story to tell. I deserve to be heard and seen no matter what challenges I face. I hope that the world can become more accessible and ADA friendly one day.

Links to Resources about the ADA and Disability Pride Month: