Archive for the ‘introspective’ Category


Using All The Spoons

Using All The Spoons

I think it was one of my doctors that said,

“There is nothing noble about having to endure severe pain when there are options that will help alleviate the pain. I don’t care if its severe physical pain, or if its severe emotional pain. We put ourselves through too much pain, because we think that it’s some sort of spiritual, strengthening experience and it proves something about us as an individual. I don’t believe that.  Asking for help and pain relief is not a sign of weakness but of pride. Knowing when to ask for help is a strength.”

That’s been rattling inside my head for months, and I believe it’s true.

I’ve seen people online in support groups and in real life say that they endure the pain of Fibromyalgia and Lupus and other chronic pain disorders without asking for any relief from doctors or any support from friends and family because it’s a test from God. If Jesus could die on the cross for our sins then the least they could do is endure their pain without complaint outside of the Fibro support group.

I want to scream at those people that the entire point of Jesus dying on the cross for us was to sacrifice himself for our sins so that there would never have to be another blood sacrifice again to God. No more pain from sin, because he was carrying it. So any pain we’re going through isn’t because of sin, or because God wants us to go through it as some sort of test. God created scientists and doctors for a reason. God created nutritionists and yes, even homeopaths for a reason. To help us improve our health and ease pain. If we try and it doesn’t work, we simply (ha) having found the right combination yet.

So many of us that have chronic pain like Fibromyalgia seem to think that showing signs of pain and asking for help or support is a sign of weakness, and if we show any kind of weakness then others will walk all over us and take advantage of us.

We think that obtaining pain relief and admitting that natural remedies we’re trying don’t work well enough or are no longer working and we need to try something else is a sign of weakness.

We don’t want people to think we’re faking.

We don’t want people thinking we’re exaggerating.

We don’t want people thinking we’re whining.

We don’t want anyone to think we’re trying to suck The System dry and take Your Tax Dollars In Benefits We Don’t Deserve.

We believe that you have a right to judge our pain relatively while at the same time, believing that you have no right to judge.

We believe that we should be able to endure any kind of pain in silence, that we shouldn’t burden other people with our pain.

We believe we’re burdens.

We hope our spouses and loved ones stay by us steadfastly  no matter what, and refuse to see us as burdens and make great effort to understand us even when we’re at our worst moods and least ability.

We believe that our children shouldn’t see our pain and disability and how we handle it…. just like how so many people believe children should never see their parents fight and make up… without realizing that children who witness and learn to deal with disabilities in their families grow up with compassion and an ability to understand disabilities.

We believe we’re burdens even to our doctors ( if we don’t already believe Big Pharmacy is out to get us, poison us, take all our money, and all doctors are in on it). We forget that doctors are our employees who work for us and with us, and we get a say in our treatment. We forget that we have a voice, but that we need to learn to use it.

Our burden shouldn’t ever be someone else’s burden. Yet… when our loved ones don’t ask us how we’re feeling or offer to help us, offer to try to relieve us some how, some way, so many of us are hurt and insulted and complain that our friends and family must not care. We spend so much of our lives hiding our feelings, emotions, pain, and disability that we forget we’re not really letting them in. They don’t really know us because they only know what we’ve shown them until now. If it appears as if we don’t need help or care or support, they’re not going to offer it. If we don’t tell them we need anything, they won’t offer it. If we don’t ask, no one will help.

And if we don’t inform spouses and children that they’re expected to help, they won’t.

Yet we take on their burdens as if they were our own without complaints even if we can’t afford it, and we’ve nearly run out of spoons. Why do we do that? Because we need to prove ourselves. We need to prove that we’re fine and can handle our own burdens, those burdens that no one else is supposed to notice, as well as be helpful and loving to everyone else.

We need to prove that we can overcome. We can bust through disability that’s in our way. We need to defeat disability and illness and disorders and differences. If we can’t we need to pretend and try to pass so as not to make others uncomfortable.

We need to always be Hope and Inspiration. We need to be wanted.

The stigma of pain and disability has been built into  our society for so long that people who endure challenges from disabilities and chronic severe pain perpetuate that stigma by behaving as if we’re ashamed of our pain. That’s what hiding our disabilities and pain really does. When we minimize our experiences and we even go so far as to say,

“Someone else has it worse than I do. I shouldn’t complain.”

We’re saying that we don’t matter enough to be taken care of and to be paid attention to and to be pampered. We don’t matter enough, period.

Do I always want to look for strength in my disabilities? No. Hell no. I have some terribly horrible days where I don’t have any strength of any kind at all mentally, emotionally, or physically. I’m not an inspiration or hope to anyone on those days. I’m not trying to be.

The strength lies in our ability to ask for help.

More of us need to learn to insist on help from our loved ones, and explain what we need when we ask for help and support.

It’s not enough to hope and beg and pray that our loved ones will simply know that we need them, and that they will know what exactly it is we need. The problem is they’re not mind readers. How can they possibly know what we need if we don’t tell them explicitly what we need. Our doctors don’t even know unless we tell them explicitly. And when we tell people we love, as well as our doctors, we need to use a strong voice. We need to use our no nonsense voice in order to get our message across. I’m known for bringing printouts with a list of things I want to talk about. I’m also known for bringing printout of research I’ve done, and I bring links to online research which I know my doctors probably should have done or have already done so that they know there’s a resource that they can go to. When loved ones don’t seem to understand what I’m going through I have learned to show them research. I’m still learning to show my pain rather than hide it. I’m learning that hiding my pain and enduring my pain is not Noble. It does not make me a stronger person. When I need help I am learning to ask for help.

But perhaps even more importantly, when I need help and someone offers their help I am learning to say yes and accept it. It’s hard to do that because of pride, but I have learned that more people than not do have a good heart and even if they don’t understand what I’m enduring if I let them see my pain even if they cannot empathize with me they still want to help. If they can see an actual physical need that’s obvious to them they’re more likely to help. Someone sees simply pain and they don’t know what to do it’s hard to endure it it’s hard to know how to help. People feel helpless when there’s not an obvious task to say here let me help you with this. It’s hard to say what can I do to help you when there’s no clear solution to expect the person they want to help.

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Have you heard of The Mighty? It’s difficult to avoid the site. People share so-called feel-good stories from The Mighty on any social media they can find. A dog rescues a firefighter from a frozen lake. A kitten does CPR on a grandmother that’s taking care of her daughter’s newborn son.

Even a stopped clock is right twice a day.

Typically the stories have a common template or two.

  • Someone is victimized and someone is rescued
  • Someone is disabled and needs to be saved from their disability
  • Someone is disabled and oh look! The school got together for a photo op to show off how enlightened they are for being kind to the disabled person at a football game!
  • Some is victimized as the disabled person’s parent, because life pulled a fast one and sucker punched them by thrusting a disabled child upon them but someone else comes along to brighten the parent’s day
  • Someone is living in poverty but someone takes a video of someone else giving a few people a free hot lunch at Panera Bread
  • Someone is living in poverty and is interviewed, having to prove they didn’t cause their own downfall so that others feel sorry for them and will want to donate money and clothes and even offer a job… and then the person that offers the job is the savior
  • Someone secretly videos homeless people to see how they’ll behave if they find money on the ground and see meters run out on cars at the same time

 

After a very little while you notice the pattern, and you realize that you can’t excuse the ableism and self-indulgence, the finger-wagging at those who did wrong and the praise of those who did right.

You notice that the victims are parents of individuals that are disabled usually use wheelchairs or are Autistic or have Downs Syndrome. One problem is that they’re not really the focus of the articles. They’re the prop, and they’re what the hero and heroine need to overcome or rescue. These stories perpetuate the ableism and stigma of disabilities.

Disabled individuals (or the disabilities they deal with) are perceived as challenges for others to overcome; as tragedies that occurred to the parents. That’s dangerous thinking that dehumanizes the individuals who really need the attention and help … or who don’t want any attention at all and want to live their lives without judgmental intervention… and most certainly without sharing their most intimate and personal issues and photos without permission. The voice is given to the parent, the caregiver, not the child, and so when there are biological parents who choose to abuse or end the lives of their disabled children, they feel justified and people will defend them because hey… look at just how much suffering the parent had to go through.

On the other hand, if disabled individuals are seen as something that needs to be rescued, these stories tend to infantilize disabled individuals. They can’t care for themselves or speak for themselves, much less advocate for themselves, much less be seen as human.

These stereotypes and ableism perpetuate the notion that disabilities are something to grieve over, and something we must prevent at all costs, cure at all costs, fix, and feel badly about. For the sake of the parents, and for the sake of the little babies.

Worst of all, it causes people to believe that disabilities decrease the value of a life without the intervention of the kindness of strangers.

Either way, the pattern is that disabilities have victimized parents and caregivers and the people who  have disabilities are often not really viewed as being people, but props in these stories.

This pattern has the Autism self-advocacy community and others in the Disability Community in a rightfully angry discussion about an article that has now been pulled by The Mighty. I know, I took the long way round again to get to the crux, sorry.

A supposedly autistic mother to an autistic child posted an article that included a “meltdown bingo” card that was intended to be humorous and supportive to other parents of autistic children. I was embarrassed and bordering on irate when I saw it pop up in my feed from following The Mighty on Facebook (The Mighty was a recommendation to follow a long time ago, I mindlessly clicked it). I clenched my jaw and kept from commenting on the article because I couldn’t keep my fingers from typing something less than polite, less than commiserative. I closed out of it and then I relaxed because thankfully I don’t have any friends on any media would share that tripe and I knew it wouldn’t show up in my feed again.

Except it did show up in my feed again… it started showing up in Facebook and on Twitter and on several of the blogs I follow. The subject of it did, anyway, because the original article was pulled and The Mighty is trying to apologize for it and “recognizes that it was ableist” when they never intend to post anything ableist. Except… well. There’s a firestorm bursting through all of my social media justifying that initial feeling and helping, allowing me to put to words what has felt wrong with The Mighty. That specific article from the autistic mother with the autistic child and the autism meltdown bingo card tipped the internet’s kitten right over.

I’m relieved that the article was pulled (don’t worry, I’m sure it was screen capped or cached somewhere for posterity), but only after there was a lot of backlash for it. This post here from Lemon Peel is one I love hard and has some great links.  CAN U NOT: A Twitter Ode From Me To The Mighty | Lemon Peel

We parents? We make mistakes. Sometimes we make them publicly. Sometimes we make spectacular mistakes, embarrassingly horrifically ghastly mistakes. The challenge we face is to apologize from the heart, to learn from them, to try to repair the damage we’ve done when possible, and not to repeat the mistakes. Sometimes we have to accept that reparation isn’t possible, but we still have to try. Then we have to move on and once we know better, we do better.

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ChristmasMusicOn a different note, why in the name of John Lennon jumping on a Saltine cracker is my “Awesome Christmas” (don’t judge me) station on Pandora not playing awesome Christmas music? It’s not like I haven’t spent time programming the hell out of it. But here it is. It’s not even playing Christmas music.

Here comes Frozen. Here comes The Little Mermaid (what?). Taylor Swift’s Blank Space. Wham! Holiday. I’m serious. At least it’s Christmas?

All of the Christmas channels are having the same bipolar concerns. I wonder if it has something to do with the seasons shifting and flipping sides of the country this year? Usually by now, Connecticut is buried under five feet of snow after three storms. New England is, instead, enjoying days of 50*-65*F weather even if it does dip into the freezing temps at night. It’s the first day of Winter.

It might be time to have another chat with Mother Nature in the interest of Global Warming, but my chronic pain issues aren’t really complaining about the lack of below freezing temperatures and lack of snow. There’s a ton of gratitude here.

So here I am, picky about Christmas music. It takes me a while to get to the point of being willing to listen to it, and I got to that point when I heard Pentatonix’s Mary Did You Know on the radio last week and it made me sob in the car on the way to work.

Yes, I admit I’m picky. I love hymns and softer music. I love the songs that are a bit slower, or are more gentle. I love the songs that touch the heart in a spiritual way, modern or old fashioned. Make no mistake… they’re all Christmas songs.

Two days of corrupted Christmas channels though, guys. I only have so many “thumbs down” per hour, you know, and I have to save them for the Christmas songs I simply can’t stand.

This also presents another dilemma:

What do you do when there’s a song that you love that comes on but it’s on the wrong channel? 

This is what I’m saying! Anxiety!

/Working Mom Problems

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I have no idea where I originally found this

BANG HEAD HERE

I have another secret.

I shared it with The Mister last night.

It was such an incredible release, and it allowed me to cry. He let me cry. He encouraged me to cry.

He asked the right questions. He didn’t get frustrated. He was empathetic.

He helped lift a burden that’s been getting increasingly heavier and heavier for the past month.

Even better than that, he offered me a solution that I had thought about but didn’t dare speak out loud and in fact, had made me feel like I was a horrible, selfish human being for even thinking it. I had been so afraid he wouldn’t understand, but he did. He tried.

Maybe he doesn’t understand completely. Maybe all he understands is that I’m in distress … I’m at my limit of endurance: emotionally, mentally, physically.

But that’s all I need. That, and the gentle hugs he offered. He realized my pain, both emotionally and physically. He remembered how sick I’ve been with this “mild” flu over the past week (thank God in Heaven for the doctors who make flu vaccines, People, and no… I couldn’t be more serious right now).

I think I just might have the best Mister Spouse ever. Like, in ever of ever. I need to appreciate him more.

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The Stalking Tiger, such a pretty, seductive, sneaky girl when she’s trying to convince you that her presence is really not a big deal.

I thought I had my eye on her well enough. I thought she was being soothed and kept in her cage.

It turns out her cage wasn’t locked securely. The door has been open and I didn’t even realize it.

It’s a dance we do. It’s a dance I’ve done my entire life. I’m used to hearing the purr grumbling in the throat of The Tiger. Even with treatment, I don’t know if I can say that I’d know what I’d do if I didn’t have the breath of the tiger behind me. When she’s laying at my feet or at the foot of my bed, I can fool myself into thinking that it’s manageable. I can fool myself into thinking that she’s not stalking me, but protecting me, and that she’s keeping her distance.

But I keep feeling her bump into me, and now her teeth have scraped my calves. She’s drawn blood, and there’s simply no denying that. The rivulets of anxiety drip upward and sideways, making their path to my brain. Odd… odd how I’m associating anxiety with blood. Or maybe not so odd considering the state of the world right now, and the current headlines over the past month. Maybe it’s not so odd with the anniversaries and end of the year anxieties in work and the usual holiday worries.

I’ve noticed the depression getting increasingly worse over the last couple of weeks, as the symptoms I feel become too much to ignore. I’ve been forcing myself to take some stock in my language, my outlook, and how I’m feeling in general. I’ve been feeling as if I’m floating and watching myself act and react, or not act and react enough.

I’ve been feeling as if I’m separated from the Me part of me. It’s somewhat surreal. It’s almost as if I’m a different me taking care of Me, but I’m not doing a really good job. It’s likely been affecting me and my performance in, well, life for longer than the past month and it’s only just now caught me bleeding.

I’m having trouble concentrating in conversations.

I’m having trouble socializing.

I’m dreading most events.

I cry at the news. I cry at blogs. I cry at happy stuff.

When I should cry, I can’t even shed a single tear.

Laughing feels forced.

I dread leaving the house every day. Of course this hampers errands and shopping for groceries.

I’m having trouble remembering details, even when I write them down.

I’m losing focus.

It’s harder for me to care about getting ready for work. I do it… but the drive isn’t there. Physical pain, of course, is a huge driving force regarding that.

My emotions are leaning towards sad, extremely sad, anxious, angry, frustrated, annoyed, flat.

Dread.

A perpetual state of anxiety.

I can fake happy. OK, I can try to fake happy and the truth is, I’m not really sure that in the stage of depression and anxiety I’m in if I’m really pulling it off.

I can almost fake being able to tolerate my physical pain levels. I can’t tell if I’m covering up any of the feelings that would make other people uncomfortable. I hope and pray people only approach me when the pain isn’t so high that I can concentrate on what they’re saying and it’s not making me feel like throwing up.

I don’t know if I’m making enough of any of it work to succeed at Life right now. I can’t tell.

I want to withdraw into myself but there’s too much going on, and that’s making things worse.

And oh, the CFS. I find that I don’t want to fight it. It gets me through excruciating physical pain and yes, it gets me through emotional pain and the non-ness that I feel. It’s not intentional going through CFS, or to be forced some days to give in to it. Accepting it is a different matter. The CFS can drain the Jessica part of me although it can give some of the Jessica part of me back when I can give in. Refusing to give in to the CFS makes the Depression worse, sapping even more of the Jessica part of me. The pain worsens the depression and the CFS; the pain steals more of the Jessica part of me and I’m just less.

I’m Non-Jessica.

It’s like… an in between of existence. There’s a less-ness in how I affect others lives, and a less-ness, a non-ness in what might happen if I just disappeared. But being Non-Jessica can be a skill, too, helping me to be successful in that one thing… hiding, making the Jessica part of me less noticeable, so that she won’t be missed and no one will be angry if she can’t participate.

Can Non-Jessica still be a good person? Is my Non-Jessica-ness even still a person at all? Because what I get is a feeling of non-presence mixed with indeterminate value joined together with the un-, in-, non-. I suppose I know I’m here, but I’m still feeling unseen. Or maybe needing to be unseen. Needing to hide in plain sight so that Non-Jessica can slip away unnoticed. All of that is non-ness. Non- whatever. Non. Non-ness.

I’m not necessarily losing my bits of me. Those bits, those chunks that the Stalking Tiger likes to bite away in nibbles, then chunks, the times when even Non-Jessica is nowhere to be seen and Eaten Whole Jessica has taken her place, because when the Tiger nibbles, when she thinks I won’t notice because she’s feeding off other pain, she’s really stowing some of it away in little Tupperware boxes with little lids to be dusted off when it’s safe to take them out again, without even a dash of cinnamon sugar.

I feel as if I need time and space, which is difficult at this time of year. Everyone and everything else needs me. The problem is that the Jessica part of me, floating above Non-Jessica and watching the movie, trying to direct Non-Jessica, is forced to take control for spans of time to be functional enough to get through each day.

I need a time out, and a better lock for that cage. And also, maybe a better shrink.

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Since I was a little girl, I’ve had a fascination with Paris, France. The original “Madeline” series of stories, by Ludwig Bemelmans (not the ones written by his grandson, oh no no no) can be thanked for my early obsession with Paris. Madeline, the little seven-year old redhead girl who attended boarding school in a city where anything was possible for this little girl that I wished I could be like. She was the version of me I could be in my head without getting in trouble, and somehow she jumped out at me in those pages. I would dream that Madeline was me, brave in my life when I couldn’t be; or that Madeline was my best friend and defending me. I didn’t know that there were only six books, and they had been written long before I was born. I didn’t really care; I read and re-read those six books until I knew them backwards and forwards.

As I grew up, I discovered that in addition to my Italian heritage, I could also brag about my French heritage. My mother’s family emigrated from Canada. As soon as I could in school, I took French language classes. I was able to have some conversational French with my mom, and when I visited with my aunt and uncles they let me practice on them. I’ve always thought French to be a beautiful language. Later I learned that an uncle traced our family tree all the way back to colonial Paris. I’ve always been proud of this part of my heritage. I’ve always connected with each part of my heritage, but the French part has always been particularly special thanks to Madeline.

So when Paris was subjected to a series of terrorist attacks over a week ago, my heart skipped several beats. Fear clenched my lungs in its fist. It’s been well over a week now and I can’t say that my heart is beating full force or that I’m breathing with ease. I feel as if not only was my beloved Paris physically attacked, damaged, terrorized, but part of my childhood was too. It’s like the child in me is feeling the fear and gasping for breath. So is Madeline, and her friends in the boarding school. Except she has Miss Clavel, with her levelheadedness and sure voice, her calm reassurance and demeanor.

“SOURCE: The Atlantic dot com

—One week after the deadly attacks in Paris, France’s Prime Minister Manuel Valls announced that the death toll has gone up to 130. Another 367 people were injured.

—The upper house of the French parliament confirmed that the country’s state of emergency will be extended for another three months. The measure will grant authorities expanded police powers and at what some say is a big cost to civil liberties in France.”

My biggest fear is that all of the terror and fear being instilled by the terrorists is that we will gladly give away our civil liberties here in the United States in the name of freedom. The problem with that is that once we sign away a freedom, it’s damn near impossible to ever get it back.

We all need to turn to Miss Clavel. Forget that, I need to become Miss Clavel. I can’t be Madeline any longer. I have little girls of my own now.

This is hard, you know. My daughters all have questions and fears, and it’s my job to be levelheaded, assured, calm, reassuring, and protect them while still being honest. It’s about making sure that I listen to the right, unbiased sources and refuse to be a victim of fear mongering and hateful propaganda. It’s about making sure that I ignore treasonous Anti-American sentiments and anti-Christian values.

I calm my surroundings, calm my breathing, and pray silently without words. I wait for the words; feelings; knowledge; peace; awareness; reassurance; clarity that prayer has always brought me when I ask simply for guidance. Sometimes all I receive is a single word with a gentle peace that relaxes my body. Sometimes my mind clears and the clutter is brushed away.

Sometimes it seems as if it doesn’t work at all, so I busy myself reading, cooking, talking with my daughters or husband, writing, or hell even playing Angry Birds. It’s often when I least expect it that an answer comes to me, and it’s often not what I expected even though it’s always what I asked for.

I wonder if that was Miss Clavel’s process. I envy her, with her quick thinking and self-assuredness. She always seemed to know the answer.

Since the Paris attacks there have been several more attacks around the world. Just in France, citizens are terrorizing their own citizens. Hate crimes against Muslim Parisians has increased some ridiculously chaotic number like 300% in the past week alone.

According to the FBI, the total number of hate crimes in the U.S. declined from 2013 to 2014, which is somewhat negligible. The reported number dropped by only 449 if you consider that the total is over 5,000. Hate crimes against Muslim Americans, however, didn’t drop at all and in fact increased from 2013 to 2014 from 135 to 154. That’s only what’s been reported. I don’t even want to know what the number have been just since the Paris attacks. What I see in my Facebook feed and in other social media, as well as in article comments, is disheartening. The most vile thing I’ve seen is people calling for the President to be assassinated outright, or killed in an ISIS attack on the White House. I see this from supposed Christians cherry picking a quote from the Bible, and throwing Jesus under the bus. And I can’t help but think how very un-American and treasonous it is to wish for something like that. Such a dark heart, filled with viciousness and vileness seeded by evil.

I wish I could go back to being a child, playing with Madeline in my head, getting lost in her books.

 

 

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A very important concept in fighting for Disability Rights is moving away from the Medical Model and towards the Social Model. Acceptance over a cure. Creating Universal Accessibility ideals that are helpful for everyone so that no one may be excluded.

To make it easier to understand I’ll give visuals:

This staircase is lovely, with a ramp built into it as an integral part of the architectural design.

The ramp is built into the architecture as art rather than an afterthought at Robson Square in Vancouver by Arthur Erickson

Robson Square in Vancouver by Arthur Erickson

 

 

 

 

 

 

 

 

 

 

This design below eliminates the staircase altogether in the form a beautiful circular, winding red ramp that everyone uses at the Ed Roberts Campus in Berkeley, California. It’s difficult to see from the photo below, but the doors are also wide and airy, and it’s reported that most visitors find this layout to be very warm and inviting.

Circular Ramp Ed Roberts Campus in Berkeley, Calif; example of Universal Design

 

 

 

 

 

 

 

 

 

The Greendale Villa near Disney World is known to be disability-friendly and uses Universal Design in its architecture. They even use it in their swimming pools.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

Accessible Universal Swimming Pool at Greendale Villa in Fla.

 

 

 

 

 

 

 

 

 

 

The examples I gave are easy to understand because you can see them. They’re also easy to understand because they’re inclusive for people that have visible physical disabilities for people that use wheelchairs; parents using strollers or are holding a wobbly toddler by the hand; aging individuals or others who need a walker or a cane; people that have a cast on their leg and use crutches; a postal delivery person carrying or wheeling heavy packages; a student lugging around heavy books or an enormous art project; a caterer making a delicate delivery. The fact of the matter is that stairs are clumsy and difficult to navigate.

When it comes to the disabilities that you can’t see, the Universal Design within the Social Model is still not only an ideal, but a necessity. We’re not demanding that the world change to give disabled individuals “special treatment.” We’re hoping that the world will understand that a level playing field is the goal. We’re hoping that by showing care in being inclusive to all, people might start to figure out that disabled individuals are valuable and have as much to offer and contribute as anyone else does.

I see resistance to these ideas because I think some people believe that acceptance of disabilities means giving up, not trying, not caring, being willing to somehow not be enough of something. Human maybe? Even though disabled people are fully People, fully Human, no matter the disability. But for many people, the Social Model means that those who have disabilities have the audacity be disabled; to not hide the disabilities adequately enough to appear to have no disability at all or, worse, to not have overcome the disability or disabilities. The problem with resisting the Social Model is that the Social Model benefits EVERYONE. That’s how inclusion works. Funny, that.

Imagine these ramps that are inclusive of everyone as communication barriers that have been broken down for people that have mental health disabilities, developmental learning disorders, cognitive function disorders, traumatic brain injuries, intellectual disabilities, impaired vision, impaired hearing… and all of the other invisible disabilities that so many people forget about when it comes to universal designs.

It can be as simple as recognizing that there are multiple ways of communicating. Even a newborn baby can communicate through facial expressions, body language, different types of cries, different vocalizations, eye contact, and even how fast or slow they’re breathing. Someone that is classified as non-speaking and “incapable” of speech is still always capable of communicating.

So if you have someone that’s Autistic or has a speech delay and their parents have been told they’ll “never” speak because they seemingly aren’t verbal since they haven’t  (yet) communicated verbally, what do you think the assumption tends to be?

“My child can’t communicate and never will, and therefore they must be intellectually disabled.”

That sounds so dire, doesn’t it? I would bet my left butt cheek that their child uses body language, facial expressions, other sounds, or possibly even sign language of some sort to attempt to communicate. Pointing, shaking the head, refusal of performing a request and performing a different behavior instead… that’s all communication. It doesn’t mean that the child doesn’t understand what’s being said or asked; it simply means they need another way to communicate.

Hear this well: non-verbal learning disorders and delays don’t mean someone has an intellectual disability, or that they’re incompetent. While neurological disorders and other disabilities such as Autism and Non-verbal Learning Disorder and Sensory Processing Disorder and Cognitive Delays can co-occur, they are mutually exclusive of each other.

This means that you need to assume that your child or any other disabled individual you come across should be presumed to be competent. Presume they can hear you and understand you, and maybe even read. Maybe learn to use cards with images on them. Offer a computer keyboard or a tablet. See if your loved one enjoys drawing, painting, or a craft. Art is also communication. So is music. So is math. Everything someone does or doesn’t do is communication of some sort.

Disability does not make one less. It’s not something to be ashamed of. As someone with disabilities I’m not going to sugarcoat it and say that disabilities are fun and everyone should join me and have them. I’m not going to say that the challenges aren’t incredibly difficult, and that some obstacles don’t really seem impossible to ever overcome. I’m not going to say that it isn’t discouraging at times. Being disabled often sucks, but it doesn’t mean I’m miserable.

And that’s something else.

One big assumption about individuals that have disabilities that needs to disappear forever is that “being disabled means being miserable and life isn’t worth living.” That statement is a myth and it’s offensive. It’s why I found it heartbreaking, tragic, and ridiculous when people decided that Robin Williams’ suicide was understandable when they discovered it was so he wouldn’t have to progress with his disability rather than because it was part of his lifelong depression and, thus, “selfish” of him to commit suicide.

Life is more than worth living when one has one or more disabilities and it’s no one’s place to put value on someone’s life, to measure their worth or right to live or whether someone’s life is a tragedy based on the single fact that they have disabilities or make assumptions on someone’s suffering levels. Life is still worth being part of society, part of family and friends, and having society recognize that individuals who are disabled have just as much to contribute and deserve to earn a living wage, with voices and opinions that are strong.

Part of making society acceptable, part of the Social Model needs to be dispelling myths and incorrect stereotypes about disabilities in general, and disability-specific. For instance, individuals who are autistic are not “suffering with Autism” and nor are they emotionless. They are autistic. Very often, in my personal observations, it seems that autistic individuals are more sensitive to emotions and they most definitely aren’t suffering due to their Autism. The suffering occurs from the treatment of others who may be abusive and less understanding, less accepting, and being in environments that are not disability friendly. For instance, lights that are too bright and music that’s too loud in a store that can already be disconcerting makes the experience nearly impossible for some. It’s an assault on the senses.

There are movie theaters that now offer sensory friendly screenings of movies. They will advertise a specific movie with the times, locations, and accommodations being made: raised lights; reduced level of sound for the movie; allowing wandering during the showing within the theater itself; allowing talking; providing ESL interpreters; allowing carers such as PCA’s to accompany without having to pay additional fees.  Universal acceptance, Social Model.

Assimilating universal designs into our society is an acceptance that everyone of any ability is valuable and worthy of having access to anything and everything. It’s a recognition that everyone’s needs are different. It’s difficult when much of society isn’t just afraid of acknowledging disabilities, but disgusted by them. There is a lot of fear of being seen as different, as Other, because once someone sees you as disabled, you’re also seen as weak and incompetent. There are a lot of people who try to take advantage of that perceived weakness, and there are those who use their physical intimidation to put themselves in a powerful position and misuse it. It’s called bullying.

For me to accept my disabilities relating to Fibromyalgia, depression, anxiety is not giving in or giving up. It’s not accepting a suffocating, negative label. It gives me a name for the obstacles I have to cope with, and a starting point to learn. It means that while I accept my disabilities I can still do my best to help myself feel better. I may have some cognitive issues and massive physical pain that would bring down a horse, but I am not weak nor incompetent. I have strong opinions. I’m a self-advocate and I advocate for my children and others. It’s not easy for me to accept my particular disability because it’s physically and mentally taxing. It’s scary to realize that it’s going to progressively get worse. That just makes me work even harder to take care of myself.

By the same token, by accepting my daughter’s Autism, I’m not throwing her to the wolves and giving up her, drowning her with alphabet soup letters and labels. Discipline doesn’t go out the window. Education doesn’t get tossed in the wind. I’m helping her along with her sisters learn about who they are, what they’re going through, and working out the process with them. We’re learning together how to identify their strengths, talents, interests so that they can learn how to best communicate and what their best learning methods are.

Along the way, we’ve figured out which clothing can trigger negative behaviors. We’ve learned which ingredients in particular foods and drinks to avoid. We’ve learned what weather changes can do to health. We’ve learned how to adjust our thinking, our language, our expectations. We’ve learned that these things change and are fluid and that being flexible as parents and caregivers is simply the best approach.

In doing so, I’m trying to make the world more accessible for her. I’m letting her be who she is without trying to change her. I’m not trying to make her “pass” for neuro-typical or, as those of us who are non-autistic are sometimes called by some people in the Autistic Self-Advocate Movement, Allistic. I’d like her to know that she can change her world. She does need to learn how the “Allistic” world works so that she can navigate it, but whether she ever appears to be like her non-autistic peers isn’t really on our radar.

Would you like to know why? Because I don’t want her to grow up believing that Autism is something she has to overcome or that she has to try to cover up in order to make other people feel more comfortable. She should never have to feel like she has to overcome herself or something that is such a major part of what makes her who she is at her core. Her pride in who she is should be empowering for her.

I see the discomfort people feel when they see my cane, see my pain, and they don’t know what to say. I see it in the faces of people who haven’t seen me in a long time and see me now, or those who just can’t get used to seeing me with the cane. That used to make me feel bad, and as if I had to apologize for it. Then I realized that I shouldn’t have to apologize for having a disability. The discomfort of others regarding my disability or them realizing my daughter has a disability isn’t my problem to work out. It’s up to them to figure out how to accept it and make it part of their reality. Maybe I’m not entirely comfortable with my own disabilities, and that’s okay because I’m learning and it’s a process. I go back and forth between accepting it and not… but as someone who is a do-er I tend to lean towards accepting and moving along so that I can find the new path.

It starts in the classrooms, and I’m hoping that these inclusive classrooms are encouraging children to bring their acceptance and generosity of spirit home to their families. If that happens, their parents bring it to work and it spreads.

We’ve learned that neurology is diverse and that they don’t need, or want, a cure. I’ve heard the words come from Sweet Girl’s mouth herself. She just wants to be accepted for who she is.She embraces her Autism and wants to be accepted. That’s all any of my girls want regardless of their neurology. They are not weak nor incompetent. They are not damaged.

We just need a pool that we can ease into rather than having to jump into all at once.

They Don’t Want an Autism Cure – The Daily Beast.

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