Kyle Peron, Studio Manager and Enablement Business Resource Group’s Disability Affinity Co-Lead
On July 26th, 1990, the federal government signed the Americans with Disabilities Act (ADA) and today we recognize this day as National Disability Independence Day. Through this act, millions of disabled people and their families started to receive equal opportunities to work, live, and thrive in the United States.
For me, National Disability Independence Day means a lot. Having profound hearing loss has certainly caused issues for me. However, I would not personally change anything. It is a part of my identity. It is a part of who I am as a person. I have always said that a Disability does not define who you are or what you are capable of doing. That may be what I have, but it is not who I am. I want all people with disabilities to be looked at and truly seen. We are way more than our disabilities. It is always about our ABILITIES. On this day, let us reach out and get to know folks and the amazing gifts they each have.
We understand that the passing of the ADA liberated not only people with disabilities but their families as well. Below you will read two stories from my colleagues, Melissa and Charlene, whose lives would not be the same without the passing of this act.
Happy National Disability Independence Day!
Melissa Mackey, Associate Director of Search
It’s 5:30 am on Monday and I’m already up. I don’t start work until 8:00 am. So, why am I up so early?
I have bronchiectasis (https://www.nhlbi.nih.gov/health/bronchiectasis). It’s a serious lung disease that causes mucus buildup and frequent infections.
Every morning, and several times each day, I have to perform chest clearance exercises so I can breathe. The exercises can take as little as ten minutes or as much as an hour, depending on the level of congestion.
That’s why I get up at 5:30 am. And it’s why I must finish my workday on time. If I miss a lung clearance session, it can mean hospitalization or worse.
If you were to look at me, you’d never know I have a disability. Lung diseases are a hidden disability. People often say, “But you don’t look sick!”
Maybe not. And most of the time, I feel pretty good – despite having had part of my right lung removed in November 2020 due to excessive damage from the bronchiectasis.
If I could share one thing that people with disabilities want you to know about us, it’s that it takes us a lot longer to do things than the non-disabled. We get tired easily. We need flexibility. We run out of spoons (https://www.webmd.com/multiple-sclerosis/features/spoon-theory).
Even though I’m disabled, I have a full-time job that allows me to support myself and helps me to feel independent. I’m living proof that it is possible to work and still have a disability.
I have the same dreams and ambitions as my non-disabled peers, and I'm not afraid to work hard to make them come true. Every day since January 2021, I've walked at least a mile, and sometimes more than that—and once every week I walk a 10k!
I also play the clarinet. It's harder than it used to be when I had a full set of lungs, but it’s worth it to be able to work hard at something and succeed. I’m proud that I can still play and perform at a high level.
It hasn't always been easy for me though—in fact, sometimes it's hard! But having understanding friends, family members and coworkers makes all the difference in the world when life gets tough.
Charlene Grober, Business Systems Analyst Manager and Parents BRG Co-Lead
I’m a former part-time caregiver of a disabled adult parent. Former, because my father passed away on January 1st, 2020. I’d always like to think he was laying on the couch watching a sports game or maybe a Hallmark movie while munching on his favorite snack when he passed. However, I’ll never know for sure because I wasn’t there and that’s okay.
My father became disabled after he had two failed fusion surgeries on his ankle beginning in 2009. He could never walk normally again but it was the chronic pain that was the worst. Later, after his hip replacement, he was almost completely unable to walk.
At first, my father refused to believe he was disabled. He would rather crawl to the bathroom on his own than ask for any help. I had persuaded him to get a cell phone and to get a disabled parking pass and license plate. He felt that he was taking benefits away from other people. Eventually, he came to terms with it and realized he had to adapt to this new life and learn how to navigate. After a few years, in his daily life, he had adapted and established a routine.
So, how does my appreciation for National Disability Independence Day fit in? Without the American Disabilities Act (ADA) of 1990, my father would not have been able to experience the full life he lived after becoming disabled. The ADA is a federal law that prohibits discrimination against people with disabilities and helps to ensure equal opportunity for all persons with disabilities in the areas of employment, transportation, public accommodations, communication, and governmental activities.
My father loved to travel - especially, with his grandsons. He loved to see the world through their eyes and enjoy the simple things. He traveled with us every Christmas and we were able to create so many wonderful memories. Without the ADA, it would have been extremely difficult to do this. But finding out the policies in some places was easy and for others, it was like speaking another language.
As an abled person, I had no clue about how to navigate this world. But as we had every experience, I learned. Airlines, rental cars, theme parks, hotels/rentals, beaches, and taxis (just to name a few things) were planned. Will the airline have a wheelchair and attendant available when we arrive? How long do I plan to wait for these services (i.e., impacts on airline travel time)? Does the hotel have elevators, wide doorways, and an accessible shower? Will the taxi or rental car have enough space for a wheelchair? What are the theme park policies and rules? Am I able to help transfer my Dad from his chair to wherever he will be sitting? All these things were a lot easier with the ADA. One time, we traveled to the Brazilian Amazon, a bucket list item for my father, and once we left the airport, my eyes were opened to how much more accessible the United States is for those with disabilities.
To me, National Disability Independence Day celebrates the ability to give the disabled inclusion. Personally, it helped me to care for my father, help him with daily routines, and give him memories he cherished. It was the ability to include him in experiences with dignity, like riding Space Mountain and swimming in the Rio Tapajos, with his grandkids. Memories we will never forget.
