I've just yesterday finished watching ABC's Speechless. And to be honest, I already miss it. I discovered it because of Robyn Lambird, the youtuber girl I've mentioned in a previous post, and also Zach Anner, who we obviously need to talk about here as well.
So, Zach is one of the funniest youtubers I've come across, who also happens to have CP and features it in genious comedic ways. I won't give you spoilers. Check himself out, here's his channel, you're welcome.
Fun fact: Zach ended up making an appearence on the show as - putting it in Maya's words - future JJ.
Here's Zach's video on it:
Speaking from a personal point of view here, I must say I had never watched any series before where a charatcter on a wheelchair was portrayed, appart from Glee, I just remembered. And as for Glee, I must state here that I personally think Artie was really undevelopped and underrated.
What's different here though is mainly the way the series is constructed, I think. The way JJ's CP is always there, but at the same time it is such an usual situation, it almost becomes a background matter, unless some new (frequent) challenge comes up.
And, lets face it, the brilliant part of this, is how it actually ressonates with how our daily life goes, having CP. It's all very real to me. And so funny because it actually is so true.
Another thing I must point out too, though, is how I came to notice that by frequently watching JJ and his cerebral palsy padrons, spastic movements and facial expressions while finding him so funny and cute (he even plays that to his advantage), there started to grow, let's call it a self esteem boost imprinted in me.
By more and more observation through others, CP's typical traits are slowly making its way into things I consider make us unique and give us a hell of a character... and I also must admit learning to play cute to my advantage may come in very handy, so thanks JJ DiMeo!
Obviously the fact that that Micah Fowler who plays JJ actually has CP makes it even better, because he is part of the crew, he actually knows what it's like. And I must say he is a hell of an actor, being on a different part of the spectrum, less severe than JJ, and having altered his physicality in order to create the character. It's a really well played role and not an easy one, being so funny by using only facial expressions.
Maya, played by Minnie Driver, the "special needs" mom, is completely hilarious. And even though she is a bit extreme to say the least, there are a lot of truthful situations about her that make us identify with our own family life at some point, I suppose.
But it's not only about the inherent identification part. The differences about it also make it very interesting and quite reflecting inducive.
For example the dad, Jimmy (John Ross Bowie), and his consistent emotional denial adding up to a hoarding tendency contrast with Maya's over the top momhood.
Mason Cook, who plays Ray DiMeo, brings up important topics on all of this as well: the share of parents' attention, the concerns with JJ's future, all this topped with his constant anxiety and desperate romantic situation, frequently mocked by his sister Dylan (Kyla Kenedy) who is a compulsive winner and sarcastic gem.
Kenneth (Cedric Yarbrough) is the cherry on top. If the fact that he's an unexperienced jannitor who from night to day just starts being JJ's aid with no experience whatsoever doesn't make for a cracking plot already, let me tell you he is the perfect funny sidekick to, well, everyone in the family really.
Above all, it is an awesome comedy show, with or without the cerebral palsy theme being taken into account. But having it represented in such a natural non pitty-party way, I think will help us all destroying stereotypes. And unexpectedly, like I mentioned, not only change society but also maybe help some of us accept ourselves as the cute little actually not so limited bastards we are, and that is one of the best bonuses we could ask for!
Wednesday night. One like many others. Me going through some La Cage aux Folles videos while trying to write some due projects. When a dear friend sends me a music video. Which leads to a performance video of Pink's "Try". Chat rolls on and we get to talking about dance and body expression. As weird as it may seem, able-bodies (for the lack of a better term) utterly fascinate me. Having CP since, well, ever, I always wondered how does it feel to simply command your body and have it do what you intend to without any unpredictabilty. Maybe that's why dance fascinates me so much.
We, the ones with cerebral palsy, are ironically control freaks. Because we have to be. We have to study our steps, predict our movements, develop our strategies, and get to bullet proof level with a handfull of alternative plans in case it all fails, because our body suddenly decides what we have done 100 times won't work today.
So I always wondered how liberating it must feel not having to make a detailed draft of mostly everything in order to survive. I feel we are indeed always in survival mode.
Personally, it would be a major game change to have a cerebral palsy simulator for my friends to try, because it is sometimes impossible to put into words our physical way of existing. CP bodies, to different degrees of course since it varies so much individually, are always under some kind of tension. Specially spastics like me.
I've recently discovered Gregg Mozgala, an actor with CP, who was in a very interesting (to say the least) project called Enter the Faun, in which the coreographer Tamar Rogoff used shaking and body scripting, two techniques she developed for her dancers. The first one to release trapped body tension, and the second one to promote body awareness by having movement translated into a word script. And once applied to a CP body it had absolutely outstanding results. Allowing Gregg to move like never before, and allowing him to explore himself to physical dephts he had never previously been able to. (This video illustrates the techniques and results very well).
All this got my head spinning around the body awareness theme.
I stopped physical therapy by the age of 15. Having started it before I was 1 year old. Mainly because I wanted to live. Mainly because I was tired of pain. There was not much more to do. Maybe a new way of stretching, maybe holding a cube instead of a ball while taking steps... maybe two or three more things that in the long run changed virtually nothing. I had come a long way and was happy with it. The rest was about maintenance. And above all the rest was about inventing my own ways to have my body cope with me to achieve what I want - and this is something no therapy ever taught me: creativity and persistance. Which was what I felt I needed the most, way more than painful routines.
I hadn't yet learned what ableism was, though - the disability being viewed as something to be corrected, if possible through medical intervention - And how I disagreed with it. To me, I was just trying to live my way. It wasn't untill recently, very recently indeed, that I developed my own opinion about CP and how I'd rather learn it and play through it instead of attempting to erase it (as stated in this article).
But, all this being said, I still feel a lack of self-exploration. Exactly for that matter, in order to be able to learn CP's padrons and play through them, I must explore it deeper, I must test its limits. And I have yet to find a method of doing so (the closest to date being Tamar's approach, which I didn't find a way to do in Portugal any time soon)... or have I?
I've also recently stumbled upon Leandrinha Du Art, a completely amazing being, a trans rights activist, artist, youtuber and icon who also happens to ride wheels. And I discovered a wonderful text on her blog, in which she views herself as a mermaid.
And all this came together to finally hit me. Maybe it wasn't random, me as a toddler wanting to be a mermaid. Maybe it wasn't random sitting there by the sea waiting for my fins to grow and set me free. Maybe it wasn't random that I discovered my safe haven and my ex libris both being the ocean, and the times when I am alone swimming being the ones when I get the best artistic ideas, either. I do have a way to explore myself and set me free, and it is by becoming what I am in my core: a mermaid. My first school performance was even Part of Your World, when I was 3, for Heaven's sake, this was meant to be.
I have a unique freedom and sensibility when in the water. And it is undeniable that it allows me to explore myself in ways that I could never otherwise. Not only can I walk independently, but I have even discovered I am able to jump, how cool is that? Maybe it wasn't random either that my wildest dreams once were to dance in a giant aquarium on stage... Maybe I am a mermaid born with the wrong body, and all I have to do is just keep swimming my way and refuse to sink!
Today I discovered Robyn Lambird. A currently 20 year old youtuber who lives with cerebral palsy as well. As soon as I watched this video, I knew this was something I had to talk about. In fact, it is something I've wanted to discuss for quite a while.
Truth is, we are in the 21st century here. And this is such a socially embedded tabboo, I actually needed a video to snap me back to really as to how this really shouldn't be happening. This is why I didn't even discuss is sooner. It gets under my skin. It is such a part of our lives that we get used to it, as if it wasn't wrong.
Robyn was a wake-up call here honestly. I stand up for many social causes. One of them is the dictatorship of body image. And, as odd as it may seem, forcing is to present ourselves the most conventionally normal way possible is just as damaging as the whole pitty and invisibility situation.
I get it. Supposedly the human body was made for walking. I get it, it would fit your concept of being healthier. I get it, you'd think I'd live my life to the fullest. May I remind you, though, it is MY life, you read it right. It is my body too. Chances are, at almost 22 years old, I know it a tiny bit better than you. And even if I didn't, it would still be mine.
It seems that in what comes to everything else, like she says, it all comes down to life quality. In this case however, most people always try to make us push harder, try more. It's not that we won't take advice from whoever know what they're talking about. I mean, a new perspective about how to make this easier is always welcome.
It's like we are damaged machines having to be fixed. Having to fit in. Having to correspond to a society that still forces the so called normality upon everyone. Suddenly people feel entitled to come and tell us "You can't live like that.".
What happened to you do you? What happened to individual freedom of choice? What happened to letting a person be a person and not a concept? We are people. All the hours I spent crying in pain from surgeries, stretching, therapies... There is a part of my childhood I won't ever be able to get back. And I lost it trying to become what others percieved as normal. As better. As fitting.
I don't regret it all. Some of it gave me skills that I obviously need, that otherwise I wouldn't have achieved, of course. I'd still have done it, of course. I'd just have done it differently, if I could go back. I wouldn't strive for perfection. I would above all strive for life, which is what I currently do. So what if it is riding a wheelchair? I'd much rather ride it with a smile and enjoy the ride than walk for 10 minutes and have to go home. What if I'd lose all the progress? It would be honesly a nightmare. But it would still be my body, my choice, I'm sorry to disappoint.
Bottomline really is after all, maybe we don't need to be fixed. After all, maybe we don't have to walk more often. After all, maybe we don't have to try harder. After all, maybe we don't have to "but listen". Because after all, maybe all we have to do is live however we are happiest.
This has always been one of the topics I never quite know for sure how to address. But like I said, I want to keep things raw and natural here. Yes, there was bullying, mainly in school. Before using a wheelchair, since I've always been tiny, I used to go by in a baby stroller for long walks. Or else people would easily carry me, or I would take a few steps if it was a small path. I got my first wheelchair on fourth grade. An Invacare Action Junior I believe, back in 2004.
Before that I had never felt like "the kid in the wheelchair". I was not exactly integrated with other kids, but I didn't feel so much like an alien either. Back then I had a strong and outgoing personality. My tendency for performing arts had already made its way into my life and I liked organizing plays and shows with the other kids. But the truth is, as soon as they all started with jumping ropes and playing football, I remember spending more time looking at them and wishing to be able to do it, than actually finding ways to be part of it.
It didn't take long before I started being the last chosen one for every group activity that didn't include arts or writing (they'd see me as an advantage on those). But it was all still us being kids and not knowing how to fit me in. My (long lost) strong personality did not help much either.
By then I had started leaning more into reading, watching movies, listening to music and mainly having mentally expanding talks that lasted forever after dinner (which were insanely boring for most kids) including topics like "what are we alive for?". Predictably, that increased my already growing isolation, and I gradually stopped making an effort to be a kid doing kids stuff. So by the end of elementary I was already the weirdo. Still, being quite an imaginative girl, some kids liked getting me on make-believe playtime, which I quite enjoyed too.
I had a tendency for football, never liked watching it but liked the feeling of running around after a
ball, I remember trying to play in my walker, or on the floor on all fours (destroyed endless pairs of shoes by dragging them around like that, it was my main way of moving on my own). It worked, even though I was never an advantage for my team. As long as they'd let me play, it would work fine for me, I never aimed to be a pro anyways, but at least I had something to do with them.
The worst was obviously yet to come, though. Pre-pubescent teens have a natural way of becoming cruel, it seems. And as soon as me being a goalie on my knees stopped working to captivate them (God knows why), it all started to happen. I still wasn't the kid to remain quiet, and would outsmart most of what they said to me with comebacks. But it was pointless, I was the one wanting to conquer their company, not the opposite. It eventually it got to the point the teachers started to reprimend my behaviour, since I had become bitter to them as well, saying "you shouldn't be like that, it is you who needs them after all". And I believed that, for far too long.
As years rolled on they started being more subtle. It was not so much what they said anymore, there were no comebacks I could defend myself with. By then, it was all about looks of disgust, passive aggressive notes, not opening the doors to let me in (I could not do it myself), and despising any kind of closeness to me.
So I started getting quieter too. My mind was not for them anyways and that way I would not have to fade myself off just to fit in. And then adolescence kicked in. And it was a nightmare. If no one liked me before, and I had more friends being teachers than students (even though they still condemned me for "not making an effort to get along even though you need constant physical help"), then it became a jungle of "lets see who can make it worse". Which went from destroying my stuff to calling me a whore for wearing shorts, or leaving me alone when I had no walker or wheelchair near (there was a scheduled set of 2 people each day designated to be "responsible" for helping me, so I could at least survive. They hated it and so did I. As bad as it was, that got me feeling like a damn awful burden, to add to the rest)
I had never felt lonelier than when I was around 12 /13 years old. They started to despise me out loud. Luckily for me, the human brain tends to wipe out what is too painful, so it is mainly diffuse memories right now. I took silence as my weapon. Emotionally too. I became like a wall. Never talking unless strictly necessary, and avoiding eye contact as much as I could. Thought it would eventually stop, but it was too long for me being the ugly duckling to make it forgetable. The last drop though, I remember clearly, was the whole class setting up a fake messenger account as a boy named Daniel. I fell for it. Lonely as I was, I would happily throw myself all in for anyone who would bother to even say hi. "Daniel" started telling me he was in love with me. Again, I fell for it. As soon as I accepted to be his girlfriend "despite the physical distance", hell came lose and I was the easy unashamed dirty bitch.
Obliously depression found its way in. Strongly. I was never diagnosed. I hated psychologists. I hated motivational talks. I hated them telling me what I already knew (hello I always had excess thinking, not lack of it, was it that hard to see?). Either that or telling me I was just an attention seeker lacking life ambitions.
Suicide found its way in too. By the age of 14 I had attempted it 4 times, since there was just no point on being the outcast disgusting burden for everyone. Each time I failed my self hatred increased. It was all an unspoken topic at home, even though my parents obviously noticed, since I would only cry as soon as I locked my bedroom door. They did not neglet it, we talked about me and my life, but I guess they were always sure I was stronger than that, so we never quite grabbed the bull by the horns.
On 10th grade I found my crew. The outcasts. The queers and nerds united. We were only 4, but my goodness were we loud. Theater saved me. We started making our own projects. More than that, the deeply embedded idea of going to Lisbon gave me hope, and hope was the key to keep me going. I knew at least some minds would be bigger there (here!) and was I damn right!
I honestly feel I started to live 4 years ago, when I came to Lisbon. Self-acceptance has even already started to be a thing now! I was so damn right. My place had always been here, closer to the artits, the open minds, the free spirits, the crazy ones, the ones who take the leap... they are not that many either so far, but oh my are they great!
Let's not make this all rainbows (yes, LGBT+ pun intended, I am a damn winged unicorn - will also talk about that soon) and happy endings though. Bullying did not make me a better person. Not does depression. Nor does anxiety. Nor does all the suicidal shit. Nor the damn wheelchair. I told you I'm not a motivational coach. It almost fucking tore my wings to pieces. It eventually came to an end, though. And as for the ones who bullied me, I never heard not even about their shadows anymore. But I'm sure they heard about me, and will still hear for many years, sorry not sorry. I am not unstoppable, but you bet I am stubborn! Try harder next time.
(PS: I am open to questions about everything I post. If they justify it, I might soon do a Q&A)
There I was. A tiny bundle of energy, they say. Always wanting to check out each and everyone and everything that entered the room where I was, laying down in an incubator, with a headband and probably a pink pair of handmade booties knitted by my grandma.
It was all due to my rush of being born, it seems. Mom says she had made chocolate mousse that night, for dinner, when suddenly her waters broke. I wonder if it could have been my sweet tooth already manifesting. Either that or my anxiety was born with me.
The story goes like this: mom was 38 years old, already a risk pregnancy back in 1995, it was then or never. They definately didn't think I would be ready for peek-a-boo yet. Mom rushed to the hospital. Dad was teaching a good amount of miles away from home. Mom says she destroyed a pillow in pain, grinding it between her teeth. Next thing she knows is my head was already visible. On the 26th week of pregnancy. Our skin was so frail, you could see through the tips of our fingers, they say. My brother on the other hand, not being anxious at all (some things never change) had to be pulled out in what I can imagine must have looked and felt like a scene from The Shinning.
There are not that many details from back then. I guess the tendecy and the advice must have been to expect the worse. Heart and lungs were not fully formed. All you could see were basically tubes and monitors beeping. And four tiny hands, two pairs of shiny curious eyes determined to discover the world around them.
There are no pictures from our first week. And to be quite honest with you. even for me, the first ones that were took are too shocking even for me to publish. Mom could only hold us for the first time on the second day. Dad says he was afraid of breaking us in half for far too long. There were no diapers for our ridiculously tiny size. Not even the ones made for premature babies. Mom says they would just get a cotton ball on our bottoms and it would last. An also interesting detail: our bath tub was one of those school cafeteria inox bowls, everything else was too big (perhaps we could have been a good inspiration for a Tim Burton movie). There started even being jokes that we would fit in a match box. From what I know, we gave nightmares to many people, and I am sure many sleepless nights to our parents.
We spent a month in the hospital, with regular cardio-respiratory arrests. One of those caused cerebral palsy to me. It was far from being diagnosed yet though. The following years, I may add, were also in an out of many many hospitals, having an immune system made of paper. I became familar with oxygen masks before I could even say my first word (which was pretty damn early - by 9 months - and it was probably "no", which ironically I find hard to say now most of the times).
As soon as we were home from another stay at the hospital, we would get sick again, and if one of us were cured, it would spread to the other before we could breathe in relief.
Mom is a kindergaten educator. Back then she had worked at a physical rehab center for quite a while. Long enough to be able to tell when something of that matter was wrong. And the truth is I never seemed to be able to start crawling, or even holding my head up easily, also my limbs would not move well.
Doctors always said it was just slow development due to being premature, and that I eventually would grow out of it and develop fine. Considering I had almost no reflexes, though, sooner or later, they stopped telling my mother she was being paranoic about it, and gave me spastic diplegia, cerebral palsy, as a diagnose. Our world had crumbled. That tiny peanut who wasn't even supposed to make it, had recieved a letter of war, to fight for each literal step in her life for the rest of her days.
From what I can remember, though, I accepted it with no fuss, since I didn't even know what it was like to live without it anyways (from there to actually coming to terms with it goes a whole lot of difference, but true acceptation of a chronic "disability" is another big chapter, pretty much still unclosed, that I will write about soon).
Next thing I know is I already did physiotherapy. At about 6 months old. And I didn't stop for ages, though I must add I was lucky enough for it to affect only motor skills. But even though it is still hard to believe for many people who know me, I certainly was, for the first years of my existace, one of the kids you see drooling and not being able to control fine motor skills to even hold a pencil right (I will soon write about my most dangerous experience ever that completely changed my life in that sense, for the curious ones, it is called selective dorsal rhyzotomy, I did at the age of 6).
I don't remember much from that early start, obviously. But one thing I am sure: once upon a time that tiny bundle was born already stubborn enough to defy imposed limits. And here she remains.
My name is Inês. I am currently 21 years old, living in Lisbon, Portugal.
Still studying - taking a degree in performing arts. I aim to be a playwright, a theater producer, maybe a lyricist, maybe a collumn writer too and god knows what more. Basically I want to work in the artistic and literary fields in however many ways I find I might have a certain drive for.
Breathing on wheels is my third blog. I currently hold two more platforms, both in Portuguese: My site Inês Marto where I post creative writing and poetry quite often (I have also recently published my first book Combustão, a selection of texts I published for the last 7 years) ; and Teatral-Mente Falando which is about theater, actors and plays being made currently in Portugal.
Maybe it wouldn't be a bad idea to explain the title. Here goes nothing then:
I was born on the 3rd of September, 1995. 3 months premature (26 weeks of gestation) , with a twin brother. Rumour has it we didn't even have fully formed lungs back then. Which ended up in me having cerebral palsy, spastic dyplegia to be more specific, as a life-long companion.
Further on I am sure there will be more details about this, but long story short it affects my moving ability. With surgeries here and there and many years of therapies, I can manage pretty well to do the most that I want to - but we will also go deeper into that soon.
The thing is I have some... let's say unusual views about life and handicaps and recoveries and all that jazz. I always said that I wouldn't do this. That I wouldn't speak up about the wheelchair. That I wouldn't even make space for it in my business card (yeah, it's a metaphor, I'm not that much of a serious person to have one of those - yet). It is precisely why I finally brought myself to do this - mhmm, I'm controverse as hell and if you plan on staying I'd advise you to get used to that - but no, this isn't going against that principle of mine - yes, I'll admit that I am confusing too - like I said, it is precisely why I did this.
The aim of Breathing on wheels is to show that there is so much more to us than actually merely breathing while on a wheelchair - hence I said on, not in, that's right - quoting Aaron Wheelz Fotheringham (if you dont't know who he is, do yourself a favour and meet one of the most epic people I have been lucky to find out about) “When someone says ‘You’re in a wheelchair,’ it’s like saying that I’m confined to my chair, I’m ‘on’ my wheelchair; I ride it like a skater ‘on’ a skateboard.” I aim to write freely in here. Maybe actually become a social person even - the sky is the limit, right? - time (and feedback) will tell. Wether it is related to wheelchair life or not. Maybe by doing so I can show how it is not such big of a deal, riding wheels. Sometimes. Sometimes it is a pain in the ass (quite literally too, I may add). But that is exactly my point. Sometimes the spotlight is on it. Other times you barely notice it. Some days I feel it as an extension (quite a rusty one, glad I'm gonna get a new one pretty soon) of myself, and other times there comes the "why me?" again, and I wonder how it would be if there were no wheels needed. I'm gonna be raw here. I'm gonna be a person here, not a motivational coach. Maybe to the extent that I might regret this someday, who knows. The first step has been taken. Hang on close by and I'm gonna open the window bit by bit to my twisted mind.