Thursday, July 29, 2021

My Experience Being Invisibly Disabled

Welcome back to Musings of an Arthritic Artist! Today I'm going to talk about what my experience being invisibly disabled is. 


This is basically a storytime post where I discuss what it's like being invisibly disabled and the comments you can get from other people who don't understand.


With that being said, let's get into the post!

King, Alexandria. Musings of an Arthritic Artist. 2021.

Being invisibly disabled is both good and bad. When I say that, I don't mean that being disabled (invisibly or visibly) is ever a 100% good thing, but seeing as most people who are disabled don't have a choice, it isn't all bad. Being invisibly disabled means that you don’t “look disabled,” so you can go out in public and 'look normal.' However, the con about being invisibly disabled is the same as the pro. 

On one hand, you look normal, so you're seen as normal and 100% healthy by society. But when you actually try to use your disability benefits, since you don’t “look disabled,” you’re called out for not being disabled and taking the benefits away from people who need it by people who don’t realize that people who are disabled (wheelchair or not) do need them. 

I have one story where someone didn’t know how to handle my disability and two where my family and I were told that we shouldn’t/couldn't park in a handicapped parking spot because no one in the vehicle “looked disabled.” Both of these happened when I was a child, so these stories are at least nine years old.

I’ll try to go in order, but since these happened when I was between the ages of 5 and 9, my memory may be flawed on the order.

________________________________________

The one that counts in the first category (
didn’t know how to handle disability) happened when I was in first grade. My first grade teacher was used to dealing with normal kids. I don’t blame her for that. I don’t think there were that many kids at my school that were disabled, if any. I’m 99.9% sure I was the only one in my class. 

For homework every day, we would get five new vocabulary words. We were supposed to write each word down five times so it could be memorized. Not long into the school year (I don’t remember the month, though it couldn’t have been into the school year that far since I only lasted about 2 1/2 months), we were given a reading log. We were supposed to write down the books we’d read then turn it into the teacher. 

As I’ve mentioned in multiple posts now, I have arthritis in my wrists, which used to make writing incredibly difficult. I can write longer now, but at the time, my hand couldn’t handle more than the work done at school and the homework. Due to this, my mother would write my reading log. 

The teacher found out when I turned it in because the writing didn’t fit that of a six year old. My teacher basically told my mom that she wasn’t allowed to write my reading log because the student was supposed to do it. This wasn't really resolved. It was just kind of ignored, but it wasn't ever brought up again.

_________________________________________________

The first story in the second category (shouldn't/couldn't park in a handicapped space) happened out-of-town. Technically, I wasn't present when this incident occurred. My mother and I had already gone up the hotel room where we were staying to wait. My father and sister had gone down to unload the vehicle. 

While they were unloading everything onto a hotel cart, an older man came over to them and said that they had no right to park in the handicapped parking because neither of them looked disabled. Either my sister or dad said that the disabled passenger (me) was in the hotel room upstairs. 

I don't know if the man expected a physically disabled (though not wheelchair using) person/child to carry their own bags into the hotel or what. He meant well, but fell incredibly short. From what I heard, he seemed to be very accusatory, too, though I wasn't there. However, I do trust my sister and father, because they would not have made this up. Even though I wasn't there, I know this 100% happened.

When my family and I go out-of-town, we have a system. We pull up to the hotel and go under the covering. My father will check in. After that, we'll park--usually in a handicapped parking unless none are available--and enter the hotel with only our personal bags and items (purses, cameras, and other accessible electronics). We'll check out the hotel room. After that, one of three things will usually happen. 

All four of us will go back outside to unload the vehicle, my sister and I will stay in the hotel room while our parents unload the vehicle, or my mother and I will stay in the hotel room while my dad and sister unload the vehicle (this is the scenario that happened in this story). That's pretty much the end of that story. It's pretty short and simple.

As I mentioned before, I wasn't present for this. I only know about it because my sister and father told us about it when they went back up to the hotel room where my mom and I were waiting.

_________________________________________________

The second story happened in my hometown. I haven't really gotten told anything about my disability or plates where I'm from, but I also don't go out in public often enough to be told anything. I also haven't been told anything very recently. Again, all of these stories are at least a decade old.

My family and I were headed to watch a Christmas light show in a local neighborhood. Because the street is normally blocked off, people have to park a little outside the neighborhood. There was a temporary disabled parking lot for this multi-night event. 

Since I have plates, the first thing we did was pull up to the lot, which was tended by either an officer or security guard, or somebody else. I don't remember. 

The first thing we were asked when we pulled up was "Do you have a wheelchair?" or "Is there anyone here who requires a wheelchair?" or something along those lines. We told them no. After this, we were told we couldn't park there because there was no one in our vehicle who fit the (stereotypical) "disabled" mold.

As someone who hates being the center of attention, this annoyed me. I was only about 7-9 at this time, which meant I was even more self-conscious than I am now. I had gotten my plates a minimum of a few months before, the max being a couple years. My mom explained that not all disabilities are visible and require wheelchairs. 

At the conclusion of that conversation, we were allowed to park there. I remember getting out and just wanting to disappear. I tried to shrink in on myself. I didn't want to be there anymore. The show was amazing as always, but the build up to it stressed me out. 

As an invisibly disabled person, there are few things I hate more than having to 'prove my disability' to a stranger or being told I don't "look disabled" just because I'm young and can walk. Oh yes, remind me of how my body sometimes likes to attack itself so fiercely that it can make walking difficult (or downright impossible), yet society will never believe me because it isn't visible and I look 100% healthy. 

Remind me of how I could barely write as a child and keep up with schoolwork because my hands hurt and my mind was unable to focus because of my diet and the medications I was on, but some strangers don't believe me because they don't know me. They don't live in my body, so they have no clue. 

_________________________________________________

Disability is much more than using a wheelchair. Disability is limited mobility or debilitating pain that lasts a while and can make doing everyday tasks difficult and painful. I don't want to be disabled. I don't want these "benefits." And before anyone tells me to look on the bright side, or abandon calling myself disabled because it's a "dirty and negative word," that's not going to work. 

The truth is, I'm disabled. I always will be, but the level of disability can and will fluctuate and wane, though it will never go away. How much I need resources and my plates depends--and will always depend--on how well I feel and how well my body feels. The "benefits" I have aren't wants. They're needs. Needs that I needed as a child, and only occasionally need now. 

I think the worst part of these comments is that what people don't realize (this is just me; I can't speak for other people with invisible disabilities) is that when my family and I use my plates, we rarely use the van accessible handicapped spots. The only time we will is when there are no other spots available, or when those are the only type of handicapped parking spaces in the entire lot. 

In case you don't know, van accessible spots are the handicapped spots that have an extra white or yellow paint lined spot directly beside them. They're used for wheelchair users, either by wheelchair lifts that are built in to a vehicle or by a passenger with a manual wheelchair.

Occasionally, they are annoyingly--and illegally--used as a parking space for ignorant/inconsiderate people. There have been a few times where we've told an employee or manager about someone parked across handicapped spots, in the lined space used for wheelchair, and a car parked in two handicapped spots. All of these three things I just mentioned are ten times worse than someone who doesn't "look disabled" parking in a handicapped space. 

I don't go up to potentially invisibly disabled people and tell them they can't park in a certain spot. I definitely don't have the right to ask for someone's proof of disability. It's very rude. We don't have to prove anything to society, especially not everyday passersby. My body has reacted this way since I was a baby. I was there when I was certified disabled. I watched as the old plates on my family's vehicle were replaced with my new disabled ones. 

I was the infant who couldn't crawl, so I scooted around the house on my bottom. I was the child who spent many years being unable to walk for long (or even short) periods of time. I was the child who looked normal and healthy, but if you knew me, you wouldn't see me as "normal" and 100% healthy. I'm mostly healthy, but I could afford to gain a few more pounds and I'm in the middle of a flare. 

To this day, I can't crawl/go around on my hands and knees like a 'normal' person. Since a child I have crawled similarly to how a gorilla does, meaning that I crawl using my knuckles, not the palms of my hands. To clarify, I use my distal and middle phalanges.

_________________________________________________

The point is, I may be able to walk, and I may look normal to society (though at this point, what even is normal?), but I am disabled. Being invisibly disabled is hard. You have to deal with pain, guilt, and stress, among other things. The amount of emotional and mental hurdles you have to overcome while also dealing with physical pain is more than most people would like to have to handle. The last thing we need is people (good intentions or not) policing the handicapped spots. 

We know we don't fit society's picture/stereotype of disability, but it doesn't mean we're any less deserving of resources and accommodations. Society doesn't determine who is and isn't disabled. If society did, many people would struggle even more than they do now. Resources would be scarce and only accommodate certain people, if that. 

What about autistics? What about arthritics? Epileptics? Disabled veterans who aren't in wheelchairs? Diabetics? What happens to all of them? Are they undeserving of resources because they don't "look disabled?" I deeply hope that nobody who reads this would answer yes. 

The truth is, there are some people out there who'll tell the family of a disabled arthritic child that their kid can't be disabled or can't have arthritis because they don't have a wheelchair, arthritis is only for old people, and they're too young for that. 

One of the worst parts is that the U.S. estimates that about 25% of Americans have a disability (invisible and visible), and of that 25%, at least 20% are estimated to have invisible disabilities. Most people who are disabled don't use mobility aids such as wheelchairs, crutches, or canes. 

That means that an estimated 5% of that 25% uses something that automatically pegs them--by society--as disabled, yet those of us who make up the majority of disabled Americans are shunned and pushed to the side because we don't look disabled. Fact of the matter is, you're more likely to meet someone with an invisible disability than you are to meet someone with a disability that is visible.

_________________________________________________

The life of an invisibly disabled person is hard. Between mental, emotional, and physical struggles, life is difficult enough. Add in the words of a stranger telling you that you can't be disabled, and suddenly, life feels a lot worse. 

Some people may be able to shrug these words off, and maybe someday even I'll be able to. But when I experienced these things (mind you, these stories are positively tame compared to some other people's) as a child, they hurt. 

They made me doubt whether I was disabled enough to call myself disabled, even though I was certified disabled when I was 6. They made me doubt telling anyone I had arthritis, because "only old people get that." 

Even now, I sometimes don't like parking in a handicapped spot (even if I need it) because I don't want to be told anything. Even now, I hate parking in handicapped lots because I don't want to be seen as an impostor and someone who's stealing the benefits from others. 

I don't like sitting on the benches or chairs in restaurants when waiting for a table because I don't want to be seen as an inconsiderate teenager, even if my legs hurt. I'm a highly sensitive person, which makes hearing these comments hurt even more. 

As I mentioned before, I haven't been told anything about my disability or arthritis in about a decade, but I still remember these memories, and how much pain and guilt I felt when I heard them. No disabled child (or adult) should have to hear these things. No invisibly disabled person should hear that they can't be disabled because they aren't in a wheelchair. 

As a child, I shouldn't have felt guilty because I looked normal but my body wasn't. I shouldn't have felt guilty for something I had no control over. This is how my body is, and no one should feel guilty for using benefits they need. I didn't ask for my body to be this way. I didn't cause this. This is pretty much how I was born, and there's no changing it. 

Sometimes I need handicapped parking spots. Sometimes I can't walk as long as I can on other days, and that's okay. I may not "look disabled," but it doesn't make me need resources less. It doesn't make me inferior to those whose disabilities are visible.

I wish I could tell my younger self that none of those people's words mattered--that they didn't know me, and that I shouldn't have felt guilty. But I know that even if I could, it wouldn't mean anything. I still would've felt guilty. I still would've felt like an impostor. I still would've felt hurt. 

At the end of the day, my body will never 100% change, and nor will my sensitive soul. 

That's it for this post! I hope you enjoyed it! 


Until next time,


Lexi K🖌

4 comments:

  1. I, too, have an invisible disability. I have Crohn's Disease, and it's made me very tired quite often. There are many days where I can't even do much of anything because I'm so exhausted. My body is attacking itself and it expends a lot of energy doing so. But, to look at me, you'd never be able to tell. So I definitely know where you're coming from.

    ReplyDelete
    Replies
    1. I'm glad that you have potentially found my post relatable. I hope you are staying safe and as healthy as possible. The world of invisible disability is a hard one to navigate, but it isn't impossible. Thank you for reading, and I hope you're living your best life =D

      Delete
  2. I relate strongly to this. I have a several "invisible" disabilities too, and I often feel weird too, because I don't fit the "mold" of what a disabled person "should" look like.

    It was nice reading about your experience, and I relate to several things in it too such as teachers not understanding or not being supportive when I can't do something. And thank you so much for sharing the link to it on the group. :D
    -Quinley

    ReplyDelete
    Replies
    1. Thank you for commenting, Quinley! I'm glad to know you relate to this post. Having an invisible disability often feels lonely and isolating, and it most certainly is not.

      Thank you so much for taking time to read my post =) And you're welcome

      Delete

Comments are highly encouraged!

I enjoy hearing feedback or opinions by readers.

HOWEVER,

Every comment is moderated.

Any comment will be approved as long as it follows this blog's guidelines.

Any comments that don't adhere to the rules listed below will not be published onto posts.

1. No comments with profanity, vulgarity, or lewd content (if you won't say it in front of kindergarteners, elementary schoolers, teachers, or your grandmother, don't say it here; keep language G)

2. No spam comments

3. Keep comments on-topic

4. No derogatory comments (i.e. ableism, colorism, racism, sexism, xenophobia, homophobia, or transphobia [though not limited to the examples listed here])

5. No attacks to any particular group of religious peoples (including, but not limited to: Anti-Catholicism, Anti-Christianity, Anti-Muslim, and Anti-Semitism)

Thank you for your cooperation!

Happy commenting! =D