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!
So, I've been thinking for about a week now on what to write about next. I guess all this has become so mainstream to me, I don't always think there are enough relevant topics for me to write about, related to the wheels. Which was, after all, my point on creating this platform (as explained here). So I kind of proved my own argument already - well that was quick!
Still, there is a lot that is debatable, I guess. I foud myself caught on thinking what are my biggest current struggles. And, suddenly, void... I couldn't think of nothing. This is why it took me so long to upload a new post.
But then it finally hit me. My biggest struggles, most of them at least, are unrelated to cerebral palsy itself. Many are an indirect consequence of how it made me see life, sure, but it seized to be so much about the physical handicap long ago. Lets break it into parts though, for the matter of being exact (I'm already predicitng I'll get carried away on some topics, but here we go anyways.
- Physically, the things I find the hardest are: transfering to and from the wheelchair at unplanned scenarios, going outside on the manual wheelchair on my own (I still can't go up and down curbs or ramps, luckily I think the active wheelchair coming soon will solve this), reaching high places (I measure 1,40m, so standing does not help much either,), obviously walking alone (once again hey panic-spasticity-falling love triangle, big thanks), flexing my knees and everything that may have to necessarily depend on that (this is due to a surgery that I had back in 2007, which consists in exchanging the flexor and extensor tendon, in order to be able to stretch the legs, which priorly was not possible due to spasticity). And I can't think of much else, right this instant.
Ok, now that that's out of the way, we can get into the serious stuff. My biggest struggles, unfortunately I would add, are not physical(ly mine). And believe me, it is way easier to deal with those first ones. There are those which are related to them:
- It was a damn nightmare to find a flat without a single step (but hey I finally have a home in Lisbon!). Commuting and generally using public transportations on my own is still a pain in the ass (again the new wheelchair, once I get the hang of using it on all its splendor, lets hope so, can help this) mainly because if I am by myself, I have to use my electric scooter (it's an Invacare Colibri if you're interested). Which means having to wait for an adapted bus and also one that is empty enough that I can fit. And as for the subway, "Mind the gap" is as true as it can get, for a scooter. I'm not gonna get into the stations' elevators either, that would deserve a post of its own. Another thing related to all this is pombaline architecture. I love Lisbon and I wouldn't trade living here for anywhere else (no, not even NY), but those damn steps by the door everywhere... and did I mention I have a tendency for liking the hardest possible settings? Newsflash: I love the oldest neighbourhoods... and yeah I have tried riding a scooter in Alfama... well there are worse things...
But all this is not my point. Lets get raw. The struggles that impact me the most on a daily basis are:
- Depression and anxiety (read more about how it all started here).
- Panic attacks (sometimes caused by physical activities going wrong) which make me freeze and not be able to move anymore.
- Acceptance. Ok this is a big one, maybe the biggest. My struggle with it comes in many forms. Self-acceptance, for starters: the difficulty in getting it stuck in my head that I am enough, I push enough, I try enough. The challenge of constantly believing my own beliefs even when the world seems to collapse.
- Public image: this is related with the previous but not only. The "oh look, she's in a wheelchair" thing, it kills me, not gonna fake it. The expectations related to that, most of all. The embedded ideas that we are either completely useless or olympic atheletes on the making. The social pressure to stay active, stay in therapies, walk more, push further (yes I am aware I do it to myself too and it sucks). And being called lazy, most of all, as if what I do or don't do is not my option like everyone else (including being lazy if I want to!).
- Mind and body relation: this also of course connected with the rest. But me myself accepting my own body like it is, tummy rolls included, is not easy at all. Accepting my legs wont move the way I want them to is one of the hardest parts of not offending and blaming myself.
- Sexuality: this is a harsh topic. This definately deserves a post of its own very soon. But the general idea that we rollers don't have it really baffles me. And then my own fears of being sexually rejected because of all this shit... yeah.
- Gender expression: damn! Did I want to talk about this for ages! I define myself as bigender. So definately one of my biggest struggles is not to be ashamed of expressing my male side. Accepting body hair, for example, without being self-conscious about it myself because of what others will think. (This will also be explored deeper soon)
- Life-style: I'm a writer. Yes, the typical lonely one. I'm also a night owl, and generally keep brainstorming on my own ideas and projects till about 6am everyday. Absolutely hate mornings, avoid them at all costs. But the thing is, why the hell can't that be accepted, socially? Why do I sound crazy and utopic for living for my art and working under the moon, if that does it for me? In what does that differ from a business man that wakes up by the time I fall asleep to pursue his dream? Because so am I.
And I think the bottomline of my struggles is precisely there. Accepting that I am just pursuing my dreams and that's ok. That I'm here to be happy and that's ok, and most of all that that's enough. And also people understanding that. But if I am not consistant myself, how will others be accepting, right? Wrong! Utterly wrong. No matter how broken and ambiguous I am, I know which parts of me are really me, and which ones are a reflection of all that shit above.
And that is all I wanted, after all. That people understood that I am not all neat paitings and flowers, but I don't want to be either. Even if I curse myself way too many times. I am learning to love my own darkness. I am learning to let my own (literal and not literal) scars free. One step at a time (pun intended) but I am getting there. That is my point: I am ambiguous and that's ok. I am unconsistent and that is ok. I have tummy rolls and that is ok. I am bigender and that is ok. I am gynesexual (person sexually attracted to femininity, not necessarily only in women - hey, another article to post asap!)and that is ok. I am a dreamer and that is ok. I am polyamorous and that is ok. I am still learning and that is ok. I am bigender and that is ok. I am ever-changing and that is ok. I am on a wheelchair and that is ok. I still struggle, and that is ok. Most of all, after all I am contradictory, guess what, that's ok! Main point: I am real. And someday in this world, that will be ok.