mental illness

The Line We Toe with Neurodiversity

Lately, I’ve been seeing so much stuff online normalizing people with neurological conditions, but in a way that I feel is doing a great deal of damage. It’s been hard to find the words to describe what exactly is wrong with the “neurodiversity movement” because I fear I will be torn to shreds by all the special needs parents, purely because I’m not repeating the same mantra as everyone else. (Like, is the term special needs considered demeaning? I don’t know anymore.)

So if this post leads to my internet death, so be it. (Although I’ve always wanted to die through a crazy encounter with a giant bird of prey, but let’s get back to the blog here…)

In our mysterious politically correct world, we want everything and everyone to be so special and wonderful and great. We don’t want to offend anyone, or make anyone uncomfortable, or deal with trauma and pain.

It’s all good, all the time. And if it’s not good, it will be good again very quickly I swear DON’T PANIC EVERYTHING’S FINE STOP PANICKING.

It all begs the question: are we learning to look on the bright side, or are we learning to only look on the bright side because the other side is not ok? I repeat, It’s not OK. Don’t look over there. Hide yo kids, hide yo wife, etc.

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Where Things Get Icky

We spend so much time reading about how people with neurological conditions are “beating the odds” and “finding their passion” and “bringing uniqueness to the world.” The flawless-looking Instagram mom posts a photo of her 5 year-old son, he has autism and epilepsy. In the photo he’s smiling peacefully, using an organic pencil to create a piece of abstract artwork (which honestly looks amazing, holy crap) while the sun shines gently on the scene. Her husband is so handsome it’s shocking, and they all live in a jaw-dropping home straight out of Disgustingly Rich Southern Living Magazine, where they were a featured family in Issue 23.

There will, however, be no Instagram photo of that morning, when that same boy had a massive meltdown because he had to get his hair brushed. She won’t be posting a selfie of her tired face, as she was up all night with him dealing with side effects from his new medication. His younger sibling won’t sleep through the night, and she misses quality time with husband, and her eldest child is being bullied at school. (AND, her husband is also secretly one of those robot husbands fabricated in Japan, and a few friends are suspicious but none will ever say, “hey gurl, I’m pretty sure your husband is a robot.”)

You’ll see photos of her special, unique family, with all their blessings.

Her son with various special needs (there I go again with that term…am I to be executed now?) is unique, he is amazing, he is beautiful – he is a blessing. But the reality they face everyday raising a child with circumstances unthinkable to many is significantly less beautiful, and significantly less of a blessing. When you’re up to 3am because you’re having a panic attack for 7 hours about him, it’s not beautiful, and blessed is the opposite word to describe you feel.

Neurodiversity on the Street

The neurodiversity movement has exploded, thanks in part to the internet. (Thanks Internet, even though you can be annoying, you are still pretty cool.)

This means that people with atypical brains are being recognized and supported in more ways than ever. You can go up to any old person on the street and ask them, “What is autism?” and chances are, they will actually know something about autism. They may even know someone with autism and have an understanding of how this condition manifests itself in various people.

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If everything sounds so hunky-dory, than why on this great Earth am I making a blog post about it?

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The main source of neurodiversity influence for neurotypical people is the media. I’m looking at you, Facebook and Netflix. While it’s wonderful that millions of people are exposed to the realities of living with a different kind of brain, that reality is often skewed to fit an idea of what neurodiversity should be.

It’s almost like one of those Pinterest projects. You try to make those gorgeous red velvet cupcakes for your upcoming Christmas party. The photo you saw on Pinterest looked delicious and cute, but when you made them, your cupcakes looked like victims of a murder, and the taste was bland and filled with disappointment.

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The conversation being had about neurodiversity looks wonderful, but the reality is not so wonderful for the people directly impacted by neurodiversity. I’m not saying neurodiverse people are ugly cupcakes, but if I could create a visual of my life when things are really shitty, that visual would be of an ugly cupcake.

The Crux of the Matter

There is something lurking below the surface of this neurodiversity movement. It’s something that’s already been brewing for a while, but has the potential to overflow and make a big mess if it’s not addressed. It’s part of the not-always-so-glamorous-reality that we face as people with unique mindscapes. (Yes, mindscape, like landscape but of the mind. Think Bob Ross, but with less happy trees and more hippocampus.)

When we push people to accept neurodiverse individuals as “normal, but different” we create the belief that these people do not need any help. We put them on a pedestal of “YOU ARE PERFECT THE WAY YOU ARE, NEVER CHANGE.” Like something we write in our best friend’s yearbook at the end of middle school, we mean well.

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Ok, I’m not on fire, but you get my point?

It’s easy to reassure someone that they should be celebrated because of their unique neurological makeup when you aren’t the person with the unique neurological makeup.

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Maybe we don’t want ND people to change. We appreciate and love them just the way they are. But what if they could be themselves without all of the struggles? Our love for them wouldn’t change, and their lives would be easier.

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I often hear, “But my/my child’s/my partner’s life journey with this condition is part of who I am/they are. We should learn to love ourselves and others as they are. If you take that away, it wouldn’t be me/them anymore.”

As a person with an atypical brain (god bless you, you dysfunctional piece of meat), I can tell you, I am more than just a little different. I am not able to do many normal things. Sometimes I can do normal things, but then I pay for it later. (Sensory people you know what I’m talking about here.) I have gotten very skilled at pretending to be normal in many situations.

The thing is, I want to change. The way I am – the way my brain is – is freaking annoying. Basic activities can be hard and frustrating. It’s often stressful for my family. I’m exhausted from my life, and I’m only 27. I don’t have any spectacular mental gifts; I have spectacularly bad vestibular regulation.

Would I still have turned into the person I am today without having to manage a confusing and craptastic life of SPD? Yes, probably. And maybe I could have avoided dealing with the crippling depression and anxiety that comes with it. My SPD has made me who I am, but I would much rather it didn’t.

I’m still me with or without my neurological problem. It has shaped the person I am today, but it has added so much negativity that the few positives barely register as valuable to me.

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Many advocates for neurodiversity are campaigning for ND people to have long-lasting careers, date, socialize, participate in society in every way that NT people do. Unfortunately, this is not always possible. Again, like the Pinterest cupcakes, it sounds like a good idea, but reality has a different plan.

These people mean well, but unless they have lived it, it can be hard to understand the complexities of why “normalcy” may never be achieved.

For a person with high-functioning autism, for example, normalcy is possible in many ways. For a non-verbal person with autism who needs constant care and therapy left and right, this is significantly less possible. To suggest otherwise is undermining the reality many people and their families face everyday.

If we push neurodiversty as a normal thing, then we forget that having a dysfunctional brain condition is not normal at all.

Pushing neurodiversity as “normal” is ok when it’s referring to being diverse in ways that aren’t related to disorders or diseases. Like, I am really, really good with colors. I mean, I can organize, coordinate, identify, manipulate, and create colors in ways that I’ve found many people are impressed by. I believe my brain is really good at this for no reason. It is diverse but in a good way.

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Having autism is not good. Having severe anxiety is not good. Having OCD is not good. I’m almost certain most people would choose to not have any neurological condition, if given the chance. Parents would wish their child to be rid of all their struggles. Regular neuro-typical life is dang hard already – if we are given these extra problems to live with, let’s make sure we go about advocating for ourselves in the right direction.

Neurodiverse individuals can’t do everything. Even with accommodations, sometimes they will never be able to have total independence or success as defined by a group of people known as “the rest of the world.”

What to Take-Away from this freaking long blog post:

With all that said, the neurodiversity movement needs to propel itself forward with these three ideas in mind: Education, Acceptance, and Support.

  1. People need to be educated about neurological differences in a way that is not demeaning or false. The media has tremendous power in their hands to educate people in a way that will challenge old and outdated perspectives without being the same story of a white, teenage, man with exceptional brain abilities but terrible social status.
  2. The current neurodiversity movement is focused on acceptance, and it should continue to do so. However….
  3. The movement is not focused on support, and without support for ND individuals, the first two points are basically worthless. We can educate the population, and accept people for the way they were born, but without support (financial, medical, therapeutic, emotional, etc.) there is little chance of success or normalcy for individuals who are deeply impacted by various disorders.

Being neurodiverse is ok; celebrating it as normal and insisting that life of neurodiverse individuals can be exactly like those neurotypical individuals is not ok. It’s so easy to ride the politically correct wave. It’s less easy to stand up and say, “Hey ya goons, this is not all sunshine and roses! Stop glamorizing and normalizing neurological disorders and start funding programs that will help people like me do basic life stuff.”

Peace xo

kelly

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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.

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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.”

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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?

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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).

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.

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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.

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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

How Harry Potter saved my mental health

Ok, so maybe Harry Potter didn’t really save my mental health. He saved the ENTIRE WORLD from Lord Voldemort. All Hell broke loose at the Battle of Hogwarts, and Harry claimed victory, (even though Hermione did ALL the work but that’s not the point I’m trying to make). Since the beginning of the end, AKA middle school, the Harry Potter series has had a tremendous influence in my life.

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I read the books on the school bus every morning as a distraction from the impending doom and anxiety that awaited me at my destination.

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I read during study hall.

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*Except for that one year, where my study hall teacher was the wife of Satan…

damn kids!

I read on the ride back home.

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It was middle school that taught me that the majority of other people my age were severely lacking in moral fiber, rational thinking, and general intellect. These are not qualities that a young girl needs during a time of mental and emotional turmoil. My peers were alien to me, and so, I sealed myself shut within the pages of the HP books; a safe and comforting place to be.

One of the Gang

Soon, the films were created. Amazingly, I was the same age as the actors playing the main characters: Harry, Ron and Hermione. When they were eleven years of age and starting their first term at Hogwarts, I was nearly eleven myself. What a coincidence, I thought to myself, it’s like I was supposed to be at Hogwarts too.

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As my neurological crap grew increasingly more devastating, I propelled myself into the world of wizardry and witchcraft. No human bodily malfunction could bring me down me, I WAS A WITCH IN TRAINING. There was bound to be some spell to alleviate all this junk happening in my life.

I clung to the ridiculous and impossible chance that I would receive my letter to Hogwarts. I fantasized about the day I would look out my window and spot a doofy owl hurling itself towards my house, a tiny white envelope clutched tightly in it’s possession. I would retrieve the letter containing my acceptance, and my life problems would simply vanish. My salvation and mental health were dependent solely upon my acceptance to Hogwarts.

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My letter never came.

I started high school in September, trying to retain a sense of normalcy despite the fact that everything was not normal. My anxiety, depression, and sensory processing disorder reached a record high score on the “How Much Does Your Life Suck Right Now” meter. I was brought to doctors and therapists of all kinds, and in return, I received puzzled expressions or bottles of pills that made everything worse.  But I still had Harry Potter.

At the end of my freshman year I was pulled out of school because I was so ill. During that summer, I painted murals all over my walls – my own art therapy. Sprawled across one wall, monumental and extraordinary, was my rendering of Hogwarts Castle. Above it was a portrait of Harry surrounded by his name. In my little miserable world, it was breathtaking and comforting.

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PERFECTION

*Note: The mural truly looked like this. It was ginormous and super awesomesauce.

The years grudgingly went by….

The one constant in my life was Harry’s journey. During the deep, unrelenting surges of depression, anxiety, anger, and isolation, the wizarding world was my safe haven – an alternative reality. Granted, things were not super great in Harry’s world either. Lord Voldemort was trying to kill him, and he was trying to kill Lord Voldemort; it was not all butterbeer and chocolate frogs, if you know what I mean.

But the idea of it all – the story from start to finish – carried me away.

Here I am, 24 years alive, and still awaiting my Hogwarts letter. Santa bought me a fake one for Christmas a few years ago – was he seriously foolish enough to think I’d fall for that crapsauce? Would YOU fall for this?? (note: the fuzzy yellow caterpillar was not included in the original letter. I drew it there to cover my address. I don’t need internet hooligans knowing where I live).

(click to view bigger):

new hogwarts letter

I do not want to identify myself as a muggle (non-magic folk), for that would delete my rich, inner fantasy life that keeps me afloat in moments of suffering. I am the owner of a wand – with a tip that lights up when the wand is waved. I have a Hogwarts cloak, Gryffindor scarf and hat, Harry Potter quiz book, a 200 lb Harry Potter encyclopedia of sorts, Harry Bobble head, Snape action figure, and a million more things which you don’t probably give a crap about.

Dementors and Depression

By engulfing myself into the wizarding world, my numerous illnesses morph into Dementors; soul-sucking, happiness-destroying, butt-ugly creatures. Dementors cannot be killed, only kept at bay until they die from natural causes, or from crashing into the night bus.

Either way, you must use the Patronus Charm to protect yourself from the Dementor’s kiss of death (it’s as delightful as it sounds). The Patronus Charm is conjured by concentrating intensely on your happiest memory while stating the words, Expecto Patronum. Your wand should release a glowing animal figure which will defend you from the Dementors.  Expecto Patronum can be roughly translated from Latin to mean “I await a protector.”

“Ok Kelly, that’s real fascinating, but how does this all relate to depression?” -You

“GIVE ME A MINUTE, WOULD YOU? THIS IS COMPLICATED MATERIAL!” -Me

 

The author of Harry Potter, JK Rowling has confirmed that she created the Dementors after her own experience with depression. She stated: “Dementors are among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness out of the air around them”.

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The story of Harry Potter has given me unrelenting strength when facing situations that I was certain would be my demise. When curled into a blobby ball of emptiness, it is the thought of the antics of Fred and George that bring a stupid smile to my face. It is Hermione being a general badass. It is Ron dancing awkwardly with Professor McGonagal. It is Severus Snape, dashing around down the castle halls with his cloak billowing behind him like a majestic, dark stallion. It is Harry, doing…ugh…whatever it is that Harry does.

 

In conclusion, I’d like to amend my original statement to this: Harry Potter did save my mental health. Thanks, Harry…cough…cough..Hermione.

xo kelly

 

 

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.