disabilities

The Real Restroom Dilemma

Last summer, Momsy and I attended an Arts and Crafts Fair. After bopping around from one crafter to the next, we needed a bathroom pit stop. Luckily for us, there were actual bathrooms at this fair – not a porta potty in sight. Unfortunately for me, those bathrooms were very noisy, and included my least favorite thing ever: air-powered hand dryers.

At the bathroom building, I informed Momsy that I did not, in fact, have to pee.

I lied.

i lied

Was my bladder going to explode if the internal pressure was not released at that very moment? Probs not. But there was no way I was going into the noisy restroom.

I waited patiently outside for Momsy, watching women join the long line for the restrooms, then watching them exit after several minutes. The roar of the hand dryers, women talking, and the toilets flushing collided with the quieter sounds of the world outside as I stood baking in the bright sun, like a cookie.

Walking past me came a woman pushing another woman in a wheelchair. The woman in the wheelchair was missing her one leg below her knee. The pair were heading towards the restroom line.

Suddenly, a young volunteer working at the fair asked the woman, “are you headed to the bathrooms?

The woman in the wheelchair replied, “yes.”

The volunteer said, “oh, come this way, this the employee bathroom, but you can use it.”

The two women thanked her casually and followed her past a security gate and into another small building.

That moment resonated with me. The woman in the wheelchair was clearly disabled – anyone could see both the wheelchair and the fact that half her leg was not there. The volunteer did the right thing by trying to make life easier for her by accommodating her needs and allowing her to use a separate, less crowded bathroom.

I began to imagine if I had asked that same volunteer if I could also use the private bathroom. I envisioned myself explaining – in my awkward-while-trying-to-be-confident manner –  about my sensory processing disorder, and how the normal bathrooms were very uncomfortable – in this case, impossible – for me to use.

I could see her making that “ehhh” face, the one where she isn’t buying it, but she doesn’t want to look like an absolute idiot either. She responds with something along the lines of “well, you see, that bathroom is for employees only. I’m sorry but I don’t really work here. I’m just a volunteer, and I don’t think it would be allowed.”

the ehh face

If I was a true badass of disability equality and advocacy, I might say something along the lines of, “But I noticed you allowed that other disabled woman to use that restroom. I was hoping I could also be accommodated because of my special needs.”

Next, perhaps, she would create some kind of excuse for her decision, like “I allowed that woman to use the other restroom because her wheelchair would be too big for the regular restroom.”

OrI didn’t want her to have to wait on the long line.”

Or maybe even, “She is in a wheelchair so she has a disability. You are clearly a fully-functioning person because I cannot see any visible sign of a problem. So you cannot use the other bathroom because you are a liar and you are trying to mooch the system. SHAME….SHAAAAAAMMEE.”

Was there a small chance that this volunteer would allow me to use the private restroom after I politely explained my situation? Of course. But that small chance was probably very, very small. And for some reason, I would end up feeling guilty asking for this accommodation in the first place.

The whole moment made me think about every person with an invisible illness or disability or condition. Our lives are spent trying to make the best of a world that doesn’t seem too eager to accommodate our particular needs. Whether those needs are closer parking spaces, equal treatment in school or at work, or the need to use a different restroom when one is available.

As a teenager, I used to wear brightly colored earplugs to visually remind those around me about my condition (aside from using them for hearing protection, too). Without them, I’m certain most people would have completely forgotten about my severe sensitivity to sound and things would have been more miserable then they already were. I used to jokingly tell Momsy that I wished I was in a wheelchair because maybe then people would respect and understand my needs once they saw a visual sign of a problem. How sad is that?

Would it be tacky of me to walk around with a massive sign drapped over my shoulders, reading: PERSON WITH NEUROLOGICAL CONDITION. MAY REQUIRE SPECIAL SERVICES?

perosn with condition

I wish I didn’t have to feel that way, but that’s how much of our society thinks of differently-abled people, and that’s how desperate I am to make things easier.

As we left the arts and crafts fair that day, Momsy and I talked about it. I said, “What if a mother and her young, autistic son asked to use separate bathroom and were turned down, even after the mother explained her situation?” Momsy replied, “They would’ve had to use the regular restroom and the boy would’ve been very upset in there, and the mother would be frustrated and tired.”

I mumbled something like, “that’s not fair. Life sucks. Can we get ice cream?”

tps

And so we got ice cream, and I peed when we got home (in case you were concerned).

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Enough with the Fireworks

I’m here to declare July 4th as the worst Holiday ever. Columbus Day is a close second, by the way.

Don’t get me wrong internet friends, I support freedom and independence from the British empire. Our flag has lots of nice stars and stripes on it, and red, white and blue are a sweet color combination. That’s all very nice.

But July 4th is only known for one thing:

FIREWORKS

The concept of fireworks really irks me.

(And no, this is not because I have sensory processing disorder and fireworks are the bane of my existence, much like thunderstorms, barking dogs, escalators, and clothing tags to name a few.)

Shooting off fireworks on July 4th is awesomesauce for many people. Fireworks are colorful, big, and very loud, and I’ve learned that most people like colorful, big and very loud things. (My sensory-avoiding friends make a collective eye roll and groan here.)

Still, there are less – but still plenty – of people who dislike fireworks for various reasons.

 

Imagine this scenario: It’s National Blob Day, and everyone is celebrating. However, some people experience pain when people use blobs.

blob day 1

better blob day 2

blob day 4

blob day 3

 

It really bothers me that even though many people are aware of the struggle and pain that this “holiday” brings for thousands of people – and animals – across the country, they insist on shooting off fireworks anyway. Because, you know, apparently their fun is more important than the mental and physical well being of their neighbors. Why is this ok?

 

It makes no sense to me.

July 4th makes a miserable experience for veterans, trauma victims, people with disabilities, elderly and young children who are frightened of sudden sound, and many animals. How is it fair, to the middle aged man with severe war trauma, to sit sobbing and delirious for hours because people want to celebrate? How is it fair to the child with autism, who cries and punches herself in the head because the sound of fireworks are so disturbing to her? How is it fair to the neighbor’s dogs, who run around whining and cowering for hours because people want to enjoy explosives?

 

I wouldn’t mind the fireworks so much, except for the fact that people in residential areas use them –  many use them illegally, mind you. I understand that we live in a loud world where life is unfair and unkind to people whose bodies and minds deviate from the “norm,” whatever normal is. I understand that people want to celebrate and have fun, and that fireworks are traditional. But I simply can’t get past the anger I feel knowing that people continue to use explosives when so many suffer because of them. These people are not going to July 4th parties, and then getting upset over the fireworks. These are people in their own homes, not knowing where to go to escape the sound. I admit that I have considered driving to Canada for the weekend, in a desperate attempt to avoid this. There is literally nowhere to hide.

Imagine this other scenario:

Several of your neighbors are highly allergic to roses. The scent of them traveling through the air gives them a terrible, but non life-threatening allergic reaction. Still, every Spring, you argue that you have to plant all your roses because they make your house look nice and you really like to garden. Your neighbors will suffer for a while, but roses are SO PRETTY, so you do it anyway.

Any decent human must recognize that this is ridiculous, and quite frankly, bullying. But if we replace roses with fireworks, this suddenly becomes ok? Sadly, I know fireworks will always be part of this holiday, and there is little I can do to stop that.

 

This weekend, I will be on high-alert. I will put uncomfortable ear plugs in as the sun sets. I will sit close to my dog, his body wrapped tightly in his thundershirt; his one paw is picked up off the ground – he is nervous and upset. I will try to sleep through the storm of sudden and random explosions . My entire body jumps with each one, and my ears ache. It’s a long night, and the same will happen on Sunday. I know many, many others like me will wake up like this:

morning after july 4

But at least some people out there are having fun, right?

 

xo kelly

The Things I Need

The following blog blerg post is short writing piece I sent to The Mighty, a website that publishes short stories that empower the human spirit, specifically, human spirits with various disabilities or special needs. Anyone can send a story to this website, so I spent quite a while writing this little number below, as well as created two illustrations to go along with it. After all, who would I be if I didn’t include an awkward illustration in my blerg posts?
To my dismay, I received an email stating that this was not going to be published on their website, but they would be happy to receive other/different stories from me in the future.
Still, I wrote from the recesses of my shoul (yes, my shoul); I spent a lot of time working on this, and it would be wrong to keep it to myself knowing that someone out there might benefit from my words.
So I’m sharing it with you, dear reader:

 

The Things I Need

I am someone who has lived with a neurological condition my entire life. At the ripe old age of twenty-four, it has become clear to me what I need from those around me, and more importantly, what I don’t need.

I have learned that people are generally very uncomfortable and rather ignorant when it comes to interaction with those of us who are dealing with any sort of brain dysfunction. Whether it be mental health problems, or autism, or epilepsy – the gray mushy blob in our skulls causes us to experience numerous struggles to which people often don’t know how to react.

This lack of awareness in the world has caused me to place a high value on the few people in my life who have shown a great depth of understanding for my unique challenges. These people are my gold. It wasn’t until recently that I wondered as to why I prized these people the way I did. My thoughts traveled to the idea that, as a person with a disability, I need certain things from people around me. But these things weren’t really things, they were intangible; they were tiny, unforgettable moments of compassion and empathy.

They were things I needed to feel.

 

A question arose in my mind. How I don’t want people to make me feel?

The answers appeared slowly, accompanied by a sinking feeling somewhere deep within my chest: burdening, weak, dramatic, pathetic, incapable, overwhelming.

I don’t need a doctor to make me feel like I’ve wasted his time. I don’t need someone to tell me to “snap out of” my depression or anxiety. I don’t need people to assume what I’m able and not able to do. I don’t need people to separate me from my condition, as if it’s an insult to be considered disabled or ill.

life bad

Those are the things I don’t need.

 

So the question then became, how do I want people to make me feel?

The answers entered my mind quickly and randomly, in bursts, suddenly like bright fireworks against a dark sky: loved, supported, strong, independent, accepted, wanted.

I know now that the people in my life who I value like gold not only make me feel the things I do need to feel, but they erase the possibility that I could ever feel the things I don’t need to feel. Burdening, weak, dramatic, pathetic, incapable, or overwhelming; these are not options, ever.

 

I need someone to say to me, “Damn, this sucks. Let’s lay on the couch today and just talk and eat cupcakes.” I need medical professionals to treat me like a person, and not a number. I need honesty, laughter, and equal amounts optimism and pessimism (for when I don’t want to pretend to be happy and positive for five minutes, please). I need someone to hug me for no reason – and I mean, a real hug, not one of those crummy-half-pat-on-the-back-for-two-seconds hugs.

life good

As one of my most beloved writers, Maya Angelou, stated, “At the end of the day, people won’t remember what you said or did, they will remember how you made them feel.”

 

xo Kelly

If Disney Princesses Had SPD/ASD

In all Disney movies, the “Disney princess” faces various, complicated obstacles. However, I cannot think of a single princess that has faced a real-life disability or disease. Then I thought, what if Disney Princesses had Sensory Processing Disorder? What if they were on the autistic spectrum?

The following is my prediction of what Disney princesses (and their stories) would be like if they had SPD/ASD.

(Also, for the first time ever, I did not draw any original illustrations for this post. Instead, I added my own bits to Disney pictures. I hope you enjoy it anyway.)

 

Cinderella

Ok, I’m skipping right to the part in the story where Cinderella goes to the Ball. Logically, if Cinderella had sensory issues, this would never work. Sure she could give it a good effort, but in the end, a meltdown is likely to ensue. No sensory sensitive princess leaves untouched after a large royal gathering.

We all know how that ends.

cindy

 

Belle

The most glaring problem here is the fact that Belle is in a relationship with an unstable beast. Belle would find herself overstimulated, unsupported and for lack of a better word, really turned-off by the beast’s intense personality.

Additionally, there is ABSOLUTELY NO WAY that Belle could have soared around the library on that freaking bookshelf ladder.

belle

 

Pocahontas

While she does live in the peacefulness of nature, Pocahontas would most likely not be flinging herself over waterfalls and just around the river bend. Hello! This is too much to ask of any sensory sensitive princess’s motor skills.

Not to mention, she has to deal with a bunch of gun-wielding maniacs who want to destroy the Earth and Grandmother Willow. Talk about stress! Better hope a girl’s got some sensory tools in that longhouse of hers.

pocahontas

 

Merida & Rapunzel

All I can say is: HAIR.

I’m still adjusting to my shoulder length hair after years of having short hair. Of course, Merida and Rapunzel may find their excessive hair very soothing, but to imagine having the hair of either of these ladies is beyond my comprehension. The only exception would be that scene where Rapunzel wraps herself tightly in her hair after rolling down a hill. She’s got her own personal deep pressure device.

merida

rapunzel

 

Jasmine

When I look at Jasmine, the first thing that pops into my mind are those ginormous earrings. Alright, so she’s royalty and gold earrings are traditional attire for your basic princess, still, Jasmine appears to have two heavy triangular-shaped fruits hanging by her face, smacking into her whenever she turns her head too quickly. The sensation of those ALONE would be enough to make any princess lose it.

jasmine

Jasmine is lucky however, because she has a large tiger friend to provide her with lots of sensory tactile relief. I need a large animal to squish me and stuff.

 

Ariel

This one’s pretty obvious: SHELL BRA.

ariel

No further comments.

 

Mulan

I’ll admit that I’m kinda biased here because Mulan is my most favorite Disney Princess. Not only did she sneak her way into the Chinese military, but she defeated the vicious Huns and saved an entire country with some uncoordinated soldiers, the Eddie Murphy dragon, and a cricket.

mulan 2

If Mulan had sensory issues, China would have been overtaken by the Huns and everything would be terrible. Yes I said it.  She’s trying to save an entire country – I’m certain she would have no time to take sensory breaks. Even if she survived the military training, I do not think her sensory stamina would hold out for that entire duration. I’m talking about that scene where she shoots the rocket into the mountain and causes an avalanche, miraculously survives, and then goes to the city to fight the Huns with her gang of loonies. AND WINS.

mulan 1

The Emperor’s chaotic celebration ALONE would be a solid nope.

mulan 3

 

Dory

Technically Dory is not a princess. She is a blue fish who helped Marlin find his son. I’m including her in my list because, from my observations, Dory might have sensory/autism issues. We know that Dory has complications with short term memory, but aside from that, she’s got quirks much like those with sensory problems or autism.

dory 1

dory 2

Although she is friendly, she struggles with social situations, including lack of awareness of danger. Dory enjoys things like talking to whales and bouncing off jelly fish. I can only conclude Dory is a sensory-seeker. She is very sensitive, as she spends much of her time comforting others and generally being optimistic about the state of things even if the world looks bleak. She is a curious adventurer, and despite her peculiar behavior, Nemo would never have been found without Dory’s help. Perhaps things would have gone a bit smoother if Dory had brushed her fins with a sensory brush that morning.

 

Elsa

Unlike our favorite fish Dory, I imagine Elsa is a sensory-avoider. I almost hate to include Elsa because she has become the “celebrity” Disney princess. She has made this list, however, because Elsa displays the closest thing to what a princess would be like if she had SPD/ASD.

Although Elsa has learned to control her ice powers, her behavior and life has been drastically shaped by her condition. The same thing can be said for those of us impacted by SPD/ASD.

Elsa’s parents responded to the difficulty of their child by locking her in her room. Obviously, this was never a good idea. Elsa grew isolated and depressed.

After having a meltdown in front of basically the entire town, she ran away into the snowy mountains and built herself a fortress of ice. In the sensory world, this would be similar to you coming home after an overstimulating trip to Target and building a couch fort with blankets and pillows, and trapping yourself in the safety of the sensory-controlled space surrounded by all your favorite fidgets.

elsa 2

elsa 1

It is only until Elsa learns how to channel and manage her ice powers does her life improve. She becomes Queen, sends the bad guys home, and restores order to Arendelle. Similarly, when those of us with SPD/ASD learn to manage our various issues, we could become royals, defeat bad guys, and restore order to an entire Kingdom.

Or, we could just manage basic life skills and that would be a big freakin’ achievement too. 

I may not be a Disney princess, and neither may you, but I like to dream that one day Disney will create an animated film about a princess (or prince!) with Sensory Processing Disorder or Autism. Not only will this character be most awesomesauce in every possible way, but the film will accurately portray the reality of these disorders. It will surpass Frozen and The Lion King in profits, and become the most beloved Disney film of all time ever in the history of mankind. No, my expectations are not too high. DISNEY CAN MAKE IT HAPPEN.

 

There you have it.

Are you (or your child) a wannabe Disney hero with SPD/ASD or something else? Tell to me in the comments and maybe Disney will see it and make a film about you.

 

xo kelly

Marcus and the Club

I’ve come to realize that one of my greatest obstacles in life has been (and probably will continue to be) getting people to understand my sensory processing disorder. This rings true in college, the epitome of social involvement. But as you know, social-ness is not part of my expertise, as my sensory needs consistently seem to trump successful leisure activities. I have a very specific moment engraved in my memory that highlights this struggle.

This is me sitting in class at my local community college about three years ago:

unnamed

 

(Yes, in case you were wondering, I was the coolest person on campus…if you couldn’t tell from the illustration).

That day was unremarkable. I, along with several other students, were waiting for the arrival of our professor, who never showed up on time. During this time, most people were on their phones viewing pointless crapsauce, or chatting with their neighbor about pointless crapsauce. Meanwhile, I spent my time doing more important things:

unnamed-5

Suddenly, and I mean like outta freakin’ nowhere, this guy smashes his body onto my tiny desk, interrupting my wizard battle drawing.

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After I succeeded in NOT crapping myself, I realized he swiftly took the empty seat next to mine. His name was Marcus. He looked roughly similar to this:

unnamed-16

Marcus never talked to me up until this point, I doubt he knew my name. He normally sat on the other side of the classroom and generally made life annoying for the professor with his shenanigans. Every now and then, he was incredibly insightful during class. This was not one of those moments.

unnamed-13

I was all like:

WTF-face

I realized I had to, you know, respond. So I did.

unnamed-6

Without missing a beat, he fired right back.

“YOU SHOULD COME CLUBBIN’ TONIGHT!”

Hold up. Did I miss something? Didn’t I already address this invitation? I didn’t feel like diving into the hundreds of reasons why I didn’t want to – and probably should never – go to a club in NYC with this random guy from school.

Luckily for me, Marcus was a real charmer.

“But, sugar, you should come tonight.”

I tried politely turning down his offer.

“No thank you,” I said again.

Marcus replied, “But why don’t you want to go clubbing? I mean, I’LL BE THERE.”

unnamed-9

KILL ME NOW.

unnamed-12

It became apparent to me that I needed to give Marcus an explanation for why I couldn’t go to the club with him. I tried the simple response; nice and straight-forward.

unnamed-1

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Marcus stared at me with silence and uncertainty.

With nothing left to lose, I began rambling on about what I’m sure was a complicated mess of crapsauce. On the bright side, it sounded great in my head.

unnamed-2

unnamed-8

*pause*

unnamed-10

This ridiculous charade went on for several minutes. Marcus was a persistent bewb, and I was slowly losing my faith in mankind. I was beginning to worry that I would run out of ways to explain my SPD issues to him, because no matter what I said or how I said it, Marcus didn’t grasp the concept of me being physically unable to go clubbing…whatever the heck that means.

Just when I thought it was nearly over, a female classmate with very yellow hair and about ten thousand bracelets joined in the madness. Apparently, she was also going to the club, and now I had the pair of them giving me this look:

unnamed-14

It was at this point that I attempted to smile, because I was out of options and kinda stressed. KILL THEM WITH KINDNESS….ERR SOMETHING.

unnamed-11

Fortunately, since there is mercy in this cruel world, the professor FINALLY arrived. Marcus and bracelet girl stood up and returned to their seats on the other side of the classroom.

Of course, not before shouting, “YO SUGAR, I’LL PICK YOU UP TONIGHT. THEN WE’LL GO TO THE CLUB! AWWW YEAAA.”

unnamed-15

 

Moral of the story: If you get invited to “the club” or someplace similarly sensory dangerous, do a better job explaining yourself than I did. If that doesn’t work, smile intensely until you scare the person away. The latter method has rarely failed me.

 

xo kelly

Do you have a funny experience trying to explain your special needs? Share it in the comments!

 

 

 

 

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