By: Alexandria K.
Society says many things to disabled people that aren’t true. For a little background, I was diagnosed with RF-negative (rheumatoid factor negative) juvenile idiopathic arthritis when I was nine months old. I have arthritis in all of my joints. This includes my shoulders, elbows, wrists, fingers, ankles, toes, hips, jaw, knees, neck, and spine. When I was 6, I was certified disabled by my pediatrician and my local DMV. I have both disability plates and placards. However, I have never used mobility aids. At least, not what most people would consider mobility aids.
I’ve never had a wheelchair (I was offered one, but I refused it because I hated the looks adults would give children in wheelchairs), nor a cane or crutches. However, I did use things that helped me move around. I was wheeled around in a stroller longer than most kids, I would sit in the basket of shopping carts, and my parents bought a red wagon for me to ride around in when I was around 12 years old. Other times, my parents and older sister would give me piggyback rides to help me get around when my legs got tired of walking. Living with a disability isn’t easy for anyone. Wheelchair users constantly have to fight to seem capable, while invisibly disabled people such as myself, constantly have to fight for their disability rights.
Because of what society has stereotyped as a true disabled person, many people–including myself–are left feeling afraid and guilty when they use their accommodations. As a child, there were two instances that involved my plates. One was at a hotel where an elderly man told my dad and sister that they were stealing a spot from rightfully disabled people as they didn’t look disabled. They replied that the person who was disabled (me) was in the hotel room waiting. I was in the hotel room with my mom that day. I heard the story when they came upstairs. The second instance was at a local neighborhood of mine. It was Christmastime, and my family and I were going to see a Christmas light show on a house that does a show every year (non-COVID years). There was a parking lot for disabled people. We pulled up, and the person working that lot immediately asked if we had a wheelchair. When my parents said no, we were told that we couldn’t park there. My mom had a discussion with the person and explained that not every disability was visible. She explained my issues and we were allowed to park there.
While I haven’t come across a lot of hostility when it comes to my plates, those comments affect me to this day. As a child, I shouldn’t have felt guilty for being able to walk but need accommodations. They’ve left me feeling guilty about using parking spaces that I need. They make me feel guilty about being able to walk. Or at least, they did, until I came across a statistic a couple weeks ago.
The U.S. estimates that about 25% of Americans have a disability. Of that 25%, it is estimated that at least 20% of those Americans have an invisible disability and don’t use mobility aids on a daily basis. So why are people with invisible disabilities still fighting to be seen, heard, and recognized? I don’t know the answer to that yet.
But to the point of this, no disabled person (or person with a disability) should feel guilty for using resources that they need. Never let greater society tell you who is and isn’t disabled. To them, the only people who are physically disabled are those who are 100% of the time wheelchair users or amputees. Everyone else is ‘able-bodied.’
If whatever medical condition you have affects your daily life and impairs your abilities, mentally or physically, then you are disabled. Never let anyone else tell you otherwise. Disability can be fluid. Ambulatory wheelchair users exist. Some days, I don’t need to use my plates, while some days I need them. That isn’t me faking. That’s just my symptoms waxing and waning. That’s my joint pain fluctuating between fine and not fine.
Society assumes that just because you can walk, you have no cares in the world health-wise. They forget to factor in mental health conditions. They forget to factor in the pain you cannot see, the damage that is invisible. They assume that the only people who are disabled are the ‘wheelchair-bound’ (to be clear, I don’t support nor use that terminology as I am aware that wheelchairs give disabled people freedom).
To everyone who ever feels as if they aren’t ‘disabled enough,’ you are. To those who feel guilty because they walk around without any mobility aids, you are disabled enough. Disability isn’t one size fits all. It’s like an umbrella. It’s vague. It’s a spectrum full of varying medical conditions. To everyone who feels as if it is all inside their heads, it’s not. What you are feeling is valid, and even if it is inside your head, why should that mean it’s not real?
My name is Alexandria. I’m an 18 year old girl (she/her). I have lived with chronic illness/autoimmune disease/juvenile arthritis for almost 18 years, and have been certified disabled for about 12 of those 18 years. I’m a self-taught artist, photographer, dancer, and writer. I love watching hockey, and I love to read. I have my own blog called Musings of an Arthritic Artist that I started in March 2021 where I discuss various topics, typically ones involving the arts (writing, drawing, dance, and photography), along with my life with disability, autoimmune disease, chronic illness, and arthritis. I also like to discuss how my arthritis/disability/autoimmune disease affects my artistic life as it pertains to my goal to be an author-illustrator.