This is an important post. One that challenges a lot of popular thought and pre-conceived notions about disability, coping mechanism, ableism, and childish things. Its bold and its risky. Please dont hurt me for it.
We live in a society unsafe for children, their childhoods and what we austentatiously label childish things. On one hand we giddly await the arrival of new babies. We coercively gender them and when they arrive we dote on them and their giggly laughs and looks of amazement at everything new around them but just as quickly as we got excited at having a new baby in the home, reality sets in sometime around the age of 2 or 3. Like the honeymoon period wearing off in a marriage bringing a couple down to earth real quick, we do the same with babies when they become kids and we dont even let them let themselves down on their own time and enjoy the only peace they will ever know.
As soon as they start attempting to do stuff for themselves and as soon as they master a few words like the dreaded words no! And i can do it myself usually followed by im not a baby, we quickly and with no mercy push them off the cliff and away from the innocence and peace that if we were honest with ourselves, we'd admit that we are jealous of and wish we could still enjoy too.
Once they hit that age, we quickly move to control and clamp down on autonomy. We push and cajole, and extort and demand the end of their childhoods as expeditiously as can be managed. Everything a child seeks to hold onto becomes a target for elimination. A new milestone to attain with points given for quickest attainment and shame for failure and being slow to attain.
We know the world sucks and is a scary place and since we must face it with the cynicism of adult reality and tools, you must too as quickly as possible. You will earn your keep in this world come hell or highwater. Move to slowly or get stubborn, and we will bring the outside world inside the home...shame is the main tool but their are other hammers to use to force compliance.
Think of every single vestiges of child hood and one by one, like dragons, they are slayed and celebrated but wrath commeth, like comformity and adulthood scorned, if what are considered mini adults in training see what adulthood entails and calls bullshit and makes a bold retreat.
We criticize little ones who hold onto the bottle too long, or suck their thumbs or pacifiers too long, or take too long to potty train and get out of diapers, or wet the bed, or make a mess eating, or stuffed animals and coloring outside the lines or coloring at all, or hold onto little kid footie pjs after they have long since become too small or when a child cries too much or watches cartoons and we say they are getting too old. We shame and we criticize and we question them...we look for something wrong in them or ourselves.
We secretly crave footie pj's ourselves and having an evening bowl of chocolate ice-cream or ice cream sandwiches and making a mess. We want to buy gummi vitamins, a sneek peeks at cartoons when no ones looking. We enjoy build a bear and chuckie cheeses as much as our kids (why do you think Dave and Busters exists and continues to grow?). We want a sucker too when we go to the dentist, and we still love chicken nugget happy meals and the messes we used to make with the sweet and sour sauces even while we cant bring ourselves to buy them because they come with a toy.
We miss sleep overs and pretending to be super heroes with every day stuff. We miss blanket and pillow forts and pillow fights. We miss the fun of elementary school and wonder what happened to naps in kindergarten. Speaking of naps, they arent too bad are they?
Childhood was safety and we missed that but we wont admit it. We are supposed to be tough and embrace adulthood. Manufactures produce kid stuff for adults because some of us buy it but most of us live in denial.
On a different note but bear with me...a little latitude your honor...
We tell our kids to be nice to disabled people even while we are ableist pigs. When we come into contact with the adult who lives the unfortunate reality of incontinence and diapers, we scorn them and pitty them. We say we would rather die than experience that indignity. We pitty them and yet part of us is angry because we tie incontinence and diapers, to a time adults miss their selves but cant have. We who deal with the incontinence struggle with the shame of it because a condition thats a big part of our lives but beyond our control is tied to a stage in life long since gone for most adults and even children. If one has to use diapers after the age of three, we consider it digusting and an affront...a return to a stage in life we have no business being in, even though we dont want to be here.
We are embarrassed and dont want our conditions tied to a stage in life we left behind a long time ago. If you are like me and have struggled with bladder and bowel incontinence and diapers my whole life, childhood was miserable because, i was like a foreigner in a strange land. I didnt belong and was teased mercilessly for it. I grew up being told i was defective because my body lacked bladder and bowel control and i had to wear diapers. Fostercare was a nightmare for the same reasons plus, like other kids, especially ones like me with disabilities including having SPD, ADHD and ASD, i held on for dear life to things everyone else considered babyish and was under a lot of pressure to give up despite it helping me cope and much of it tied to developmental issues that i couldnt control.
I grew up understanding that childhood was something to leave behind as quickly as possible. I saw ableism and ageism everywhere i looked and it hurt. I saw being a kid as a disorder which is cured by adulthood.
Unfortunately i guess, i had no control over certain aspects of being a child...a little kid beyond my time growing up. It really messed with me.
Now as an adult i struggle with feelings of shame and inferiority because im diaper dependent. I long since left all the other stuff behind to prove i wasnt a disorder. I became an adult..and was cured of my childhood except one pesky thing...i still pee and poop myself and have to wear diapers. It is what it is.
When i wake up in the morning time and find i have drooled all over myself, my first thought is i hope i wasnt sucking my thumb. Im 33 years old and was about 12 before i finally stopped at night and 7 durung the day. I guess i got tired of being teased and beat up for it. I remember that being a regular thing...just like i remember getting teased and beat up all the time because i cried all the time. Id get pillows thrown at me and told to shut the bleep up and stop being a baby. You are too old. You need to grow up. You are too old to sleep with stuffed animals. Or if youd stop falling out of bed you can become a big boy and stop sleeping in a baby bed. Little did they know i didnt want to grow up. Being little felt safe even if a bit scary at the same time because i grew up with no protection. When id poop in my diaper, foster parents would make me sit in it, till i leaked over myself and let the other kids tease me while i was say 6 years old and too old to be having accidents all the time and still in diapers, i was told i smelled like a baby and thats why no one wanted to play with me. No one my age plays with babies.
So i grew up as fast as i could. I left all i could behind but this is the body and central nervous system and defective urinary and bowel systems i was born with. This will always be me. I dont make it to the toilet so i wear diapers. Multiple times a day, i have to change my own urine and poop filled diapers. Most days are just like any other days but from time to time im reminded of my own shame and i get embarrassed because i live in a society who sees me as defective. Im an adult but when people come into contact with my condition, they aren't sure what they see. Im an adult but i wear diapers and i wet and soil them because i cant make it to the toilet. On one hand im disabled and people are supposed to be nice to me but that doesn't mean they cant pitty me or see me as some prop in inspiration porn because i still live my life. Im married and have a kid. I work. Im a non profit founder and Executive Director. This all despite the fact, part of me and my experience is tied to something considered a developmental milestone, the point a toddler becomes a kid and after getting tons of praise, starts the downward spiral into adult hood where they can use the potty and ditch the diapers.
Despite being an adult people see me as an oddity. Not normal. Someone to be pittied and subtly shamed because i have a medical condition, one that gets me medicaid covered diapers shipped in large boxes with subtle clues as to the contents on the boxes...one that says im an adult but because of society, leaves me with one foot in the past...a foreign invader in both lands. Adult land and baby toddler little kid land.
Everywhere i look i see ableist language including language directed at incontinence and diapers. Including diaper and pee and crap jokes. My disability tied to negative things. My disability tied to the short lived nature of younger childhood and the subtle ways we make it negative. Every time i feel shame after changing my own poopy diapers, taken back to the looks of disgust when foster parents would eventually change my soiled diapers, childhood which i left behind a long time ago gets associated with negativity. I stink like a baby. I wear diapers like a baby. I cant control my bodily functions, on an automatic timer, like a baby. Never mind i have kidneys like an old adult or have the stomach and intestines of an old adult. I look and i see old age at 33 but society constantly reminds me that no matter what, i will always have one foot in the past. A part of me stuck in a stage of life that isn't supposed to last this long.
A non verbal autistic friend of mine on twitter, reminds me almost daily with both tweets and blog posts about how he faces a society daily which on one hand infantilizes him and steals his free agency and autonomy while his coping mechanisms are stared at and frowned upon because they involve vestiges of early childhood...like a stuffed lion he takes with him everywhere, and night lights and stars in his room and a baby sitter in his independent apartment..and coloring books and legos and bathroom problems for which he chooses to use diapers to manage because it makes him feel safer.
He gets stares and people make fun of him. He gets a push stroller his size at the zoo so he can manage the zoo experience...people think lowly of him because even though he is an adult, he presents in a way thats foreign to people. A sort of 5 year old trapped in an adults body. Being 5 years old in spirit helps him cope with the world. It allows him to function and live as best as he can. He feels pride in the mix that works for him and im proud of him myself. I commend him for smiling and waving at people who stare or pity him as if there is something wrong like he is missing out...like he is the one who is lacking when in fact, the rest of the world lacks the conviction to choose to live boldly in what ever way works.
For him it's being a little kid when it works for him and an adult when it works for him. One of his recent blog posts was titled something like autism and me being 5 years old. I know its not easy given how society likes to infantilize people with disabilities and tie things negatively to childhood but being a child sometimes works for him and it helps him to cope.
As ive mentioned, i have ADHD, and SPD, and self DX ASD. As a child, i found ways to cope with life in a way that worked for me but no one else and they made sure to remind me everyday how i was a foreigner, intruding past my allotted time. One thing i had no choice but to take with me. Some days i wish id kept my boldness from my younger years. Things that helped me cope. Im an adult but i still have my disabilities. I still need to cope but i had to learn other ways to cope. Socially acceptable and adult ways to cope. Not necessarily better ways to cope. I drink too much on occasion and smoke too many cigarettes. I have insomnia because im wired 24/7 and sensory over load...i had to let go so that people wouldn't discount me and my worth anymore than they already do.
It sucks because the abled word steals from us disabled people so much. Life is so hard already but they add pity, and peer pressure and rules that we must still follow and systems to learn to navigate or we get further left behind. Some of us get jobs even though we cant physically or emotionally handle work. Some of us find ways to hide stimming because while its a big coping mechanism for ASD and SPD children and adults, its considered strange and for many, its been a source of discipline. Something we were shamed for. Whether hand flapping or sucking on fingers or a chew necklace designed for sucking on or other wise stimmimg ...whether making loud noises or rocking back and forth...or even the safety of a stuff animal we have kept intact for many years even rescuing it out of the garbage on multiple occasions, or in my case, giving my old curioys george stuffed animal to my daughter because it became to hard to hold onto him. I wanted to and it ate me up in side to do it but it happened. It helped me cope. My mom, who passed away had given it too me many years back. I still feel myself feeling silly and ashamed that a stuffed toy meant so much to me. That i needed it. I shouldn't have to feel ashamed to cope with ableist society in ways that work for me but this is typical lived experiences for many of us disabled...especially neuro diverse people...we get mocked and then we desperately conform so we can belong in a world not built for us. That seeks to shane us for daring to exist in a way that works for us. In a world that acts as a sort of gate keeper. Where it gets to decide how we can cope and how we cant...and how disabled one must be, to get a sort of minimal pity okay to to exist even minimally in a period of time we call childhood ..to exist in it past the time limit arbitrarily applied.
As i come to the end with this article, i smile weakly because i know, if it gets too cold tonight, i can miraculously squeeze my fat ass into my prized pair of footie pjs that are meant for someone who still had permission to be a kid. I can go to sleep with my skin not crawling, wrapped in warmth that feels great but good feelings mixed with guilt and shame. Pj's too small and with feet are a reminder, they are supposed to carry an age limit..courtesy of gate keepers.
One day it would be nice to not be devalued and be discounted so much that i can choose to live boldly...like my twitter friend and like i used to when i was a kid when it was a problem but i still got away with it. When i can cope with out second thoughts.
Whether that day arrives or not i will still find ways to be a rebel. To stick my tongue out at the world for trying to limit me. To find ways to struggle being a poor adult and parent, to deal with the world laying in to me because we struggle to pay our way. To do my best to contribute to society in ways that i can. To plan for the future even though it scares me.....but also find socially unacceptable ways to cope...that work for me even if subtly and minimally.
Thank you for listening. Hopefully you learned something. Hopefully you wont try to hurt me for being a little bold...