sensory integration

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?”

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

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Personal Hell: Visiting a psychiatrist

When I’m being treated by a psychiatrist, I imagine I’m on the popular television show, Jeopardy. It goes like this:

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Throughout my twenty-four years of existence, I’ve had a heaping amount of visits to doctors of all kinds in an attempt to manage my numerous life issues – my sensory processing disorder being at the forefront.

I believe psychiatric/psychological help is imperative when dealing with physical illness. So darn it all, I’ve got to pull on my big girl panties and get stuff done, no matter how miserable it is to visit a psychiatrist.

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I never enjoy going to see a psychiatrist. If I had $5 for every bizarre session with a psychiatrist, I could probably afford to go to medical school, become a psychiatrist, and THERAPEUTIZE myself.

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As usual, I just made up another word: therapeutize.

Definition: Therapeutize: to use therapeutic techniques.

In a sentence: “I’m going through a tough time with my wife, if I could only therapeutize my marriage back to where it used to be, we’d be happy again.”

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Psychiatrists never seem to pick good locations for their offices. Unfortunately for me, these locations are sensory UNFRIENDLY. I’m uncertain whether or not these locations are chosen on purpose.

One psychiatrist had the office lights so bright, I almost couldn’t open my eyes. That was a fun visit.

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Another had a million winding stairs up to the office, like one of those M.C. Escher paintings. I felt like I could die at any moment whilst making my way to the top. Additionally, it was nearby a train station, so periodically, the train would blare its horn and I would feel my lungs give out from the intensity of the sound. I’d grip the staircase railing, waiting for death.

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Some psychiatrists have leather couches to sit on. I don’t know about you, but my body doesn’t understand leather. It’s shiny, and rubbery. My body actually hates me when I sit on leathery surfaces, as I find myself sliding right off and into a pathetic puddle on the floor.

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Some psychiatrists don’t understand my sensory needs at all, which is both humorous and sadly ironic. For example, everything they do is often very noisy, including speaking. It’s not done intentionally, but most of them are so oblivious that they don’t even notice how sensory unfriendly they are. Even if I tell them directly about the nature of my issues, all psychiatrists seem to live in their own psychiatric bubble. Must be nice there…

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well times up

Even WORSE is when I’m in the middle of an appointment, and I REALIZE the absurdity of what is happening. I want to explode with rage and hurl various sized fruits at the ignorant person in front of me. Problem is, I never remember to bring the fruit with me.

so anxiety

fascinating

why yes i am

wow congrats

thank you darling

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Still, the most difficult part of all of these psychiatric visits is when I have to think critically about myself and answer endless complicated questions.

How do you feel? How are you feeling? Describe that process? Can you give me an example of a time when your SPD did this or that and why it made you behave in this or that manner? The severity of anxiety and depression dissociative tendencies increases or decreases when compounded with the negative associations of certain stimuli with which you are negatively associated on the grounds ohfds  hfds hjbdnjcfnd sun43uhu nfjdnsf

My brain, now reduced to a mushy potato, replies:

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When it’s all over, I have an overwhelming urge to fill a void in my delicate psyche (created by psychiatrists poking at it too much). There is only one remedy for this kind of destruction:

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xo kelly

p.s. Please send all cake to me, I will stuff it into my psyche void. Thank you.

 

 

I am my disability

I have Sensory Processing Disorder. Some people don’t refer to it as a disability – I do. My SPD disables me everyday; it’s impacted my life since birth. I am not ashamed or embarrassed to say this, even if some people with SPD do not consider themselves disabled. Huzzah for those guys….but I am not them.

 

Say what you mean…or mean what you say?

About three years ago, I started to hear this new, fancy term known as people first language (also called person first language or PFL). Everyone loves abbreviations, right?

As a psychology student, this term was used all the freaking time. My professors and fellow students agreed that it was the correct way to address a person who has been given the diagnosis of a certain disability/condition (neurological or physical). I will now demonstrate, for you, at this very moment, how people first language works. OK, here I go:

Instead of saying, “that boy is autistic,” you would say, “that boy with autism.”

Instead of saying, “she’s schizophrenic,” you would say, “she has schizophrenia.”

Instead of saying, “he’s learning disabled,” you would say, “he has a learning disability.”

 

People first language is using words that put the person before the disability. It is supposed to emphasize the fact that the person in question is not defined by the nature of their disability, whatever it may be. It suggests that they are not part of their disability, rather, they are a unique individual whose personality and goals are a separate entity from their disability.

 

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In my brain, this idea doesn’t exactly sit so pleasantly. There’s a lot I don’t agree with.

(Before you begin to express your dislike of my opinion in the form of rage-filled comments, please give me the opportunity to explain my reasoning.)

We have come a long way in regard to changing the way in which our society – at least westernized society – views various illnesses and disabilities. Still, neurological conditions are far behind physical conditions when it comes to social acceptance.

People first language is often used with physical conditions, such as cancer, diabetes, spina bifida, or skin problems. But when referring to many neurological conditions, PFL is often not used: anorexic/bulimic, autistic, epileptic, dyslexic, and schizophrenic are just a few examples.

Then again, I can think of disabilities and illnesses that break this rule.

People with diabetes are often called diabetics, and I’ve never come across someone who protests this wording.

Yet, we don’t say people with cancer are cancer or cancerous.

We also don’t say that people with cerebral palsy are cerebral pals…ic?

 

Back and Forth

Do you see how confusing this is? It is such a sensitive topic, and I did a great deal of research – and a lot of pacing and stimming around the room – to formulate my opinion. For the record, I am not entirely one-sided on this issue. In fact, there are several valid points supporting PFL that I agree with. In many circumstances, people do not want their disability to be part of their identity; they believe they will be seen only as disabled and nothing more.

However, I think the direction in which people lean in this PFL or non-PFL debate depends upon their relationship with their identity as a disabled person. Even though I have SPD, I accept that I am recognized as a disabled individual by many, but that knowledge does not disable me. Being comfortable with the label “disabled” allows others to see that I am more than the limitations of my disability. I do not expect people to see me as nothing more than a disabled individual because I avoid seeing myself in that way, and people sense this.

 

Disability Identity

I’ve lost count of the number of times I’ve encountered the words, “I am not my disability.”    I don’t entirely agree with this statement either.

I believe the reason we are using people first language is because society is still rather ignorant about the nature of various disabilities and illnesses. When I say ignorant, I’m also including the words judgmental, fearful, unsure, and assuming. Right about now you’re probably thinking, “gee, that’s a very bold thing to say.”  Yes it is, my internet friends, yes it is.

While people diagnosed with diseases like cancer or diabetes often face stigma, it doesn’t hold a candle to the stigma faced by those with neurological diseases.  This stigma, I suspect, has very little to do with PFL. The judgment and misunderstanding that disabled people face every day is the result of lack of education and knowledge of disabilities. The attitude towards disabled people is the attitude that has existed for so long. I think it is the mindset BEHIND the language that creates stigma.

Stigma is the big, awkward elephant in the room. (He smells quite a bit, and everyone gets used to him. Still, he’s there…being an elephant in a room. Everyone’s thinking about how he needs to be addressed, but they’re not sure where to begin. I mean, he’s an elephant – you can’t exactly carry him out.)

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“But Kelly,” you say with a skeptical tone, “isn’t stigma created by not using people first language?”

Dearest reader, I understand the mind-blowing power of words. I have snuggled in bed at 3am sobbing over a single sentence in a novel, and the next morning, questioned my sanity.  But I know that no matter what words we use to describe a disability, that disability will always be thought of in the same way, unless the stigma – the mindset behind the words – is altered. Hear me when I say just because your disability creates challenges that you wish were not part of your life does not necessarily mean that it should be disconnected from you as a person. Disabilities – differences of any kind – define who we are. They shape our personalities; they establish our moral code; they form social skills and self awareness. You are who you are because you have lived disabled, and damn it, that is part of your identity – good or bad.

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We refer to people of various sexual orientations with the words gay, bisexual, asexual, etc. You don’t hear a gay person referred to as “a person with homosexuality.” Being gay is part of who a person is; it is part of their self. Even identities that do not originate biologically, such as religious affiliation, are often considered part of a person’s identity. “I am Jewish.” “I am Agnostic.” “I am Pastafarian.” (Yes, Pastafarians are part of the Church of the Flying Spaghetti Monster, and yes, it is a real thing. Go google it and be amazed.)

 

Really, you guys? I mean, REALLY?

Are humans so oblivious and uneducated to believe that if we say the words “the autistic man”  that we will never assume there is a person inside that man with thoughts, feelings and dreams? But miraculously if we change the words to “the man with autism” suddenly, we can see beyond his disorder. Supporters of people first language use this as an argument. I’m going to be real blunt right now and let you all know I think this is kinda ridiculous. “A man with autism” and “the autistic man” do not make me think of two different people, nor does it make me think less or more of that person. Both phrases describe the same person, who has lived their life with this neurological problem which has shaped the person they have become. THIS, is what we need to be teaching and advocating for. 

Would you tell your transgender friend to think of their gender identity as a detached person who isn’t really them, but you know, still lives in their body and will always be part of their self? Could you IMAGINE THIS ABSURD CONVERSATION? (Replace the transgender topic with bipolar disorder, for example, in the conversation below.)

Random human 1: “I hear you’re a person with transgenderism. So you have your transgender self and your inner non-transgender self, correct?”

Random human 2: “Um, no. I am transgender. It is part of my self, and my being. I’m the same person inside with or without being transgender.” 

Random human 1: “But I’ve always thought that someone with transgenderism tries to separate themselves from their transgenderistic qualities because they want people to know that they are more than their transgenderism, considering it causes a lot of problems and can make life difficult in various ways, also – “

Random human 2: “Why would people think there wasn’t any more to me than my identity as a transgender person? You cannot seriously tell me that you believe that I am not ONE person, no matter what types of, or how many identities I give myself, and what connotations those identities have? Also, if you use the word transgenderistic again I will…I will…..meh, I need a cupcake to get over this level of crapsauce.”

(Note: transgenderistic is not a word. I made it up. You could probably tell. However, crapsauce is a word because I say it is.)

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 Bad Words Linger

I need to mention that despite all I’ve said here, there are words in every language that should never be used because they are only used in a degrading, ignorant way. Words like retard, mongol, midget, or schizo, are just a few that come to mind.

These words are only associated with negative connotations. They are tied to dehumanization, and nothing more. Bottom line: don’t be a goober – don’t say words like these.

 

How I See Myself

In my case, Sensory Processing Disorder is always referred to in PFL because, well, that’s just how it’s said.

Unless of course, you’re like me and say “I am an SPD’er!” SPD’er is a phrase that I use on this very blog, and one that I see on dozens of other websites. People refer to themselves, their children – their goofy uncle – as an SPD’er, and most people are fine with this.

Does my SPD suck fun and normalcy out of my life? Yes.

Does my SPD stomp all over my efforts to be a functioning adult at times? Yes.

Do I cry over it? Yes.

Has it carefully shaped my personality, my outlook on life, my goals, and my self-worth both positively and negatively? Yes.

Does connecting my disability and my identity – deeming my disability part of me, and part of what makes me, me – cause me pain, humiliation and discrimination? NO. NO WAY JOSE, AND JOSE B.

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I also have depression and anxiety – I am depressed and anxious. I’m not enraged when someone refers to me as depressed and anxious. It is what I am. In spite of this, the stigma that surrounds mental illness permeates my self-perception. I laugh in disbelief at myself, for I’m guilty of harboring discomfort when recognizing myself as a depressed and anxious person – even when I know that depression and anxiety are real illnesses, just like any other illness and I should not feel discomfort when identifying myself in that way. It is a battle that is entirely my own, as I know I can think of my depression and anxiety in the same way that I think of my SPD. I’m just not there yet, but I’ll get there sooner or later.

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But, this still sucks…a lot

I will not tell you that having a disability isn’t hard. I know it’s hard – and miserable, and annoying, and frustrating, and isolating, and a bazillion other things. But to end stigma, disabled people have to OWN their disability. For me, and other people with disabilities, it will only hurt us more if we continue to not embrace our identity. I think people first language can separate disabled individuals from their disability, as if we’re pretending the disability doesn’t exist. Honestly, I’d like my SPD (and depression and anxiety and other issues) to not exist, thank you very much, but that’s not an option right now. It’s stuck in my body, and there is nothing gained from me ignoring it. Instead, I treat it, fight it, and work my way around it; laugh at it, cry at it, and learn to love the body that carries it.

And by it, of course, I am referring to me, because I am my disability.

 

xo kelly

p.s. Sorry for the lack of blogging recently. Depression has me mostly non-functioning. What a jerk.

 

 

 

Food Shopping

Going to the store to buy food is always an adventure.

But is it a fun adventure?!

NO.

Why?

Let’s take a trip to the local grocery store.

First, there’s the list. Gotta make a list, or nothing’s going nowhere. The process is complicated though, because Momsy likes to please everyone and nobody knows what they want.  I’m never hungry, Shannon searches Pinterest for a vague recipe, like Guacamole dip, and Dad wants Beer. Also, Chips. So it’s like this:make the list

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After the list is finally made, it’s time to go to the store. I’ll volunteer to go because Momsy’s tired because she sleeps only 3 hours a night. Also, it takes us nearly two hours to make a list. So off I go.

When I first get to the store, I’m optimistic that everything will go my way.

But after just a few moments, my confidence is crushed. Then it is thrown in the garbage.

There was this:

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And then, there was this:

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With the people noises, the fluorescent lights, the squeaky floors, the colors, the smells, I KNEW I had to stay focused. If I didn’t, I wouldn’t make it out of there alive. The family needed food. It was do or die.

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I figured the best way to do this was to pick an item on the list and just focus on that item. Nothing else would matter until that item was in the cart. Yes. This was my strategy.

So I took a gander at the list.

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And there it was. PASTA. That’s easy. I got this. I GOT THIS.

As I make my way to the pasta aisle, I see that the choices are enormous. There are different brands, different shapes, different colors; whole wheat, whole grain, whole lotta choices.

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But then it hit me. The pasta aisle was HUGE. The shelves were towering over me. I started to sweat, and my eyes felt hot and squinty. It was like that time Frodo Baggins decided to go on an adventure to Mordor with his bro Sam, and it ended up being not-so-fun for either of them.

It was all too much. This was the end. This was the end of the end.

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In a panic, I just grabbed any pasta and dashed out of there to the next aisle. However, I’m barely around the corner when I sensed a familiar presence; an unwelcome presence.

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And then I saw it.

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IT WAS THE EVIL BABY. It was following me. Somehow, I knew it could sense my fear. I was straight-up terrified.

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I didn’t know what to do.  So I smiled.

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PUT SOME PASSION INTO IT, I thought to myself.

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My face hurt from smiling at the evil baby, but my efforts were futile, so I decided to make a run for it. I had nothing left to lose.

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After my half-mile sprint across the store, I hid behind a cart of baked goods and reviewed my options. Evil baby screamed in the distance. It was his battle cry.

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The fluorescent light glared down upon me. Everything else was dark and cold (probably because I was near the frozen food aisle, but still, it was very dramatic and tense). I huddled myself behind the bread and the light revealed my hiding spot; like a criminal during interrogation. I was nearly done with the food shopping. Somehow, I managed to gather my items during my sprint.

I stood up and gathered my last items. It was time for checkout. I had to be swift.

The problem with getting on-line to pay for your food is that there are usually about 10 possible registers you could go to, but only 2 or 3 are actually open. Not to mention, it’s overstimulating to be waiting there.

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So not only am I not overstimulated from the workout that is food shopping, but now I have to wait on a line with noisy people doing noisy things with noisy machines while the speakers in the store shout noisy things at me.

I waited on line #2 for what seemed like half a century, and when I finally get up there, I’m relieved. Of course, the pimply adolescent male at the register informs me that he is now “closed.”

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No he wasn’t closed. His light was still on. I decided to address this contradiction. I thought it would be best to address him by his name, that way, I’d look like I meant business, while still being sincere. So I glanced at his name tag.

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Ok. So the dude had a weird name. I’m gonna roll with it.

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Well, “Blake,” obviously didn’t give a flying poo about me or the fact that I was near sensory meltdown. Thankfully, another store employee said something like, “Blake, just help this young lady then you’re done for the day.”

I was overjoyed with gratitude for this person! I could’ve cried with thankfulness. Dear person, whoever you are, I love you.

And I was all like:

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And Blaeck was all like:

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After dealing with Blaeck, and the incredibly loud beeps at the register, I left the store with no additional encounter with evil baby.  Although, his demonic screams will forever haunt my nightmares.

I put the groceries into my trunk, got to my car, and got lucky with no horn/car alarm related incidents. It was just another food shopping adventure. Victory was mine. All in a day’s work.

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