August 12, 2022
This year was my first year being aware of Disability Pride Month! It was a helpful year for me to learn about it as it was also my first year using mobility aids! For a little background, Disability Pride Month is celebrated each year in July. Disability Pride initially started as a day of celebration in 1990—the year that the Americans with Disabilities Act (ADA) ws signed into law. This year we celebrated the 32nd year of the ADA being passed on July 26, 1990.
I have been sick with chronic illnesses for over 12 years now. In those 12 years I have missed my fair share of family events and travels. Lupus, RA, and POTS have all affected my life in profound ways. Sometimes when you are young with an invisible illness, it can be hard to know what your body needs in order to live a full life. I never thought that my age or diagnosis warranted a wheelchair or cane, until I was forced into a wheelchair as I await for a total hip replacement in September.
A few years ago I had an errand to run at the post office. I wasn’t prepared for the line. It was hot and I felt myself start to feel extremely faint so I sat on the ground in the middle of a long line. Not only did I feel embarrassed that I am now sitting on the ground like a toddler after a temper tantrum, but people started towering over me. I’m a bit claustrophobic and the feeling of being low and looked down on made me feel even worse. Most people looked at me like I was crazy and not one person asked if I was ok or needed help. I kept scooting along with the line until it was finally my turn. I stood up and a man behind me said “a young lady like you shouldnt be on the floor, that is childish!” I was caught off guard and completely embarrassed.
Earlier this year I got a temporary handicap parking tag. After using it a couple times, going to PT or even going to my kids’ school, I couldn’t believe how much easier it made life. Then came the cane and wheelchair.
I started asking myself what is more embarrassing, using a cane or sitting on the floor in the middle of the line at the post office? Using all my spoons dropping off a forgotten lunch parking far at the boys school or park in the handicap spot? Every time I would answer these questions in my head, it always swayed towards using a mobility aid or parking pass.
I get looks or let’s call them glares weekly. Whether it’s being stared down about parking in a handicap spot or using my wheelchair. The world is still not there yet in acceptance. It seems…by the looks I get, a lot of the world is still uneducated about invisible illnesses. I wouldn’t have known how inaccessible a lot of the world is to those with disabilities. I have never been to a beach with wheelchair accommodations (even though Long Beach City just added some at a couple of their beaches) and fighting for these accommodations like the handicap pass etc. is exhausting! Chronic illness patients don’t need more stress.
I want to thank the warriors who have gone before me and paved a way for the rights we do have, and for being brave using a wheelchair or cane when it is what your body needs even if it doesn’t look like it on the outside. Experiencing first hand the improvements that need to be made in our world to make it more accessible to those with disabilities has ignited a passion in me to make life livable for all!
By Krissy Stephenson
Krissy Stephenson has been living with chronic illnesses for over 12 years. Her full time job is managing her health and household with a supportive husband, two boys and 2 dogs. For Krissy’s full lupus story, watch Season 2, Episode #6 of the #YourStoryOurFight Podcast at lupusla.org/podcast! You can also watch the full episode here, on Lupus LA’s YouTube Channel.