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?
Alexandria
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.
This is really good. You make a lot of valid points.
Thank you so much!
Alexandria K recently posted…Is Disability an ‘Adult Issue?’
This resonates with me. I was disabled at 22 for my breathing and I am still, 22yrs later, being confronted about using my disability placard. One woman actually asked me if my disability was being “fat”. Dealing with these rudenesses just exacerbate my mental health regarding my disability, and make me feel guilty, like I still am not disabled “enough” for the outside world to validate it. I’m not as eloquent as you, but thanks for your words and sharing your story here.
You’re very welcome, Angela! I know that many people with invisible disabilities struggle when it comes to their benefits, particularly with everyday passersby saying that ‘you don’t look disabled.’ This is something I’ve seen online repeatedly. It’s something that’s been said to either myself or members of my family, and it’s harmful. It’s damaging to people’s mental health, mine included. I felt guilty as a child as well. I came to be afraid of using my plates for fear that I’d be called out for ‘not looking disabled.’ Now, I know that the problem is ignorance and with other people, not myself. But you are disabled enough, and you will always be disabled enough. I hope that you can find a way to help your mental health improve, and I wish you the best of health.
Alexandria K recently posted…Is Disability an ‘Adult Issue?’
I live in a retirement community in Florida so it is hard to find an empty disabled parking spot. When I do find one and use it, I get dirty looks and comments about how I’m too young and I don’t look disabled. I have RF positive RA and sciatica. I also have mental illness and parking in disabled handicap spaces helps my anxiety because there is more room between vehicles. Even though I don’t need to use my cane or my walker everyday, I often feel like I need to in order to avoid hateful comments and looks. The other side of that, is using my cane or walker often increases the pain in my wrists and elbows. On a separate topic I hate all the commercials for biologics that show people riding bikes, dancing the night away, and living a normal life. It makes life harder for us and doesn’t give the public or new patients with an accurate portrayal of life with RA/RD.
Hi, Heather! That sounds like a real struggle to be honest. Quite frankly, those commercials annoy me as well, especially the ones that adapt songs. What annoys me about those commercials is that some of them don’t have real patients. I can’t remember what medication it was for, but my mom and I saw a commercial recently for an RA drug. There was a woman standing on top of a ladder, painting a wall, and I scoffed. At the bottom of the ad it said, ‘not real RA patients’ and my mom and I started ranking on it.
I’m not on medications currently (am in the middle of a flare though), and I do tend to have enough energy to go out and ride a bike, but that’s me medication-free and managing with diet, not me on medication. I have been on medications for over half my life (naproxen, methotrexate, and folic acid), and I have never felt the way those people do in those commercials. Medications make you tired, even moreso than standard chronic illness fatigue. They make you not want to do anything. I’ve been there.
Your reasoning for using handicapped parking spaces is valid. Who cares what other people think? Other people don’t know what you’re going through. Other people don’t know how your body feels. And honestly, it’s none of their business what space you’re using.
I hope you are having a great day, and I wish you the best of luck and health.
Alexandria K recently posted…Is Disability an ‘Adult Issue?’
Thanks!
I have an invisible disability so can agree with you whole heartedly. Good luck in your journey Alexandria x
Thank you so much, Kristy, and I am so glad you resonate with this post so strongly! I wish you the best of luck and health in your life, and I hope you are staying well.
Alexandria K recently posted…Is Disability an ‘Adult Issue?’
Thank you so much for posting this! I’m the author and it’s really nice to read such encouraging comments! I’m glad to see that some people resonate with this. I put a lot of thought into this post as this is something I have experienced and feel strongly about. Thanks to Positivity In Pain for giving me (and many others) to share their stories.
You are truly a braveheart. People are usually unaware of this collection of ‘invisible diseases’ or autoimmune diseases that result in loss of mobility and chronic pain. Articles like these serve to educate a larger audience. More power to you.
John Gatesby recently posted…Long-COVID Syndrome and the Cardiovascular System: A Review of Neurocardiologic Effects on Multiple Systems
Thank you so much, John! I’m glad you enjoyed the piece I wrote for Positivity In Pain. I agree that people are usually unaware. That is exactly why I write things like this on the internet: to bring awareness to these health conditions, particularly mine, that people may not know much about, if at all.
Thank you again so much for reading, and I hope you are doing well.
Alexandria K recently posted…How to Write a Death Scene