A dissecação dos ciclosemocionais de raiva, ansiedade e subsequente aceitação pessoal, a partir de Giovanni Frazzetto, aplicada à construção da performance (Unbreak)able.
(Unbreak)able - draft
A performance (Unbreak)able teve como mote e como ímpeto criativo desde sempre abase cíclica e circular em que me afundo e afloro. Em que convirjo comigo,colido comigo, mergulho em mim e depois me elevo.
Esses círculos, esses ciclos, sãotanto a base da minha autoconsciência como, por consequência directa, da minhaarte que é objecto disso mesmo. E reflexo disso mesmo.
No caso específico da performanceescolhida como termo de análise dos processos emocionais subjacentes à criação– (Unbreak)able – as causas dessesmesmos ciclos e aquilo que em mim os aviva foram desde logo questões que tiveque explorar, chegando a motivos concretos, que pautam todo o percursoemocional.
Assim, escolhi assentar a minhaautoexploração nesses gatilhos emocionais concretos, por uma questão deexistência de um caminho delineado, com uma mensagem artística a passar, queconsiderei essencial à realização do trabalho performático.
Tratam-se de variantes diversas. Mastodas convergentes num denominador comum: a forma de me olhar a mim própria eas consequências disso. Mais pormenorizadamente, aquilo que nisso implicamquestões como a minha diversidade funcional – a chamada deficiência – e como meleva a perspectivas diferentes sobre o meu corpo e a forma como com ele merelaciono; a minha expressão de género, que é também factor determinante desseprocesso e até mesmo a minha sexualidade, onde tudo isto se reflectedirectamente.
Todos estes factores corroboram umquadro geral de como sinto e penso quando me olho ao espelho, ou quando metorno consciente de mim, quadro esse que tentei transpor para o trabalhoartístico variadas vezes, entre elas a performance (Unbreak)able.
Esse é o tal quadro que digoacontecer de forma cíclica ou circular. Esse é o tal quadro que em mim traz aarte quer enquanto escape quer enquanto espelho.
Procuro aqui, na análise de How we feel, de Giovanni Frazzetto,explorá-lo nos seus prismas psico-emocionais e biológicos para uma aproximaçãomais científica, para assim conseguir dissecar e deixar explícito de melhorforma esse que é o complexo mecanismo que acaba por me pautar em tanto do quesou.
Inicio a análise por onde a iniciatambém Frazzetto, no seu primeiro capítulo, “Anger: hot eruptions”.
Frazzetto começa logo por tocar numponto realmente interessante: “Anger is also fear with an armour. It works as a defensive, pre-emptive reaction beforesomething hurtful can be done to us.”1
Essa afirmação da raiva ser tambémmedo com uma armadura leva-me a considerar, primeiro que tudo, a raiz dafrustração e raiva que expressei como parte primeira da performance.
A reacção de revolta para com o meucorpo físico assenta essencialmente no medo da fragilidade que lhe é inerente.O medo dos obstáculos que isso me pode trazer de futuro, como até aqui tantasvezes trouxe.
O medo que é consequência justificadade o mundo não estar preparado para os nossos corpos não-normativos, para anossa diversidade funcional. E o desamparo que isso nos traz, o nunca saber porcerto como é o amanhã, se não tivermos ninguém. O ninguém ser garantido, nempara nós nem para os outros. E neste caso, a sobrevivência não ser,consequentemente, garantida, também.
E a frustração que isso nos traz, pornos lembrarmos a cada movimento consciente do fio de dependência física que lápermanece. E de, no fundo, nem sabermos como vamos ser, quem vamos ser nósamanhã, e em que padrão físico nos vamos reger. Já que, para nós, nem nósmesmos trazemos manual de instruções que nos valha.
Se um dia corre suavemente, talvezconsigamos cozinhar o almoço e lavar a loiça – é como quem diz escalar umamontanha, e talvez no fim nos sintamos válidos. Mas se, por outro lado, um diacomeça menos bem, desde logo sair da cama se torna uma missão impossível. Desdelogo o corpo não reage, desde logo a força não chega, desde logo tudo cai aochão e muitas vezes a nossa força também.
E desde logo não resta outra hipótesesenão colocar essa armadura que a raiva impõe ao medo. Aproveitar a explosão derevolta, do porque é que nos acontece a nós se não temos culpa de nada, edeixar que nos comande a força.
E, bem ou mal, sair da cama, mesmosem que nesse dia o corpo nos permita força para mais do que nos fazer refénsda cadeira-de-rodas, a mesma que nos outros dias é um par de asas.
E ainda assim, de pijama, descalços ea contentar-nos com o pacote de bolachas que conseguimos alcançar, fechar aporta do quarto que deixamos para trás das costas e seguir vida. Mesmo que nasnossas quatro paredes. Mesmo que a não ter outra coisa por ímpeto nesses diasque não fazer da nossa própria dor uma porta, escrever sobre ela, pensar sobreela, mergulhar nela e dissecá-la.
Talvez então chegar à arte. Talvezentão chegar a outras asas. Talvez um artigo, talvez uma performance, talvez umpoema. Seja como for, uma semente, seja como for, qualquer coisa para que ocustoso sair da cama não tenha sido em vão.
No caso, a raiva e a ansiedade estãointimamente ligados. A raiva é consequência dessa ansiedade, desses medos. É aexplosão dela que faz tantas vezes com que não nos reste outra coisa senãocontinuar em frente.
A ansiedade, contudo, parece-me serum processo menos linear, e sem a compensação de trazer consigo a força. Aansiedade é muitas vezes paralisante. E é também muitas vezes causada pelaraiva.
O caminho é bilateral. Se por um ladoleva a ela, por outro lado o atirar ao abismo em que a raiva nos coloca, podemuitas vezes trazer novas situações de desamparo em que a ansiedade escala,levando-nos ao poço de dúvidas que nos assola.
DizFrazzetto, no capítulo terceiro, que dedica à ansiedade: “If examined carefully,some of those worries sound ridiculous, or unnecessary to say the least, don’tthey? Yet, alone in the darkness of my bedroom, I didn’t seem to have muchcontrol over them.”2.
“I began to worry about themeaning of all I had done, whether or not I had taken the right decisions inlife . It was one of those moments when I thought I needed to do everything atonce, as if the world were about to end and I only had a few hours left toaccomplish all I had ever wanted to do.”3.
Mas a ansiedade também, no contextoda segunda parte da performance, mais raízes que não estão apenas ligadas àideia longínqua de um corpo funcional.
Prende-se muito também com o corponão-normativo na expressão de género, a fluidez de género, o não binarismo, omedo da exclusão social que, além do resto, isso também me traga, que me leve àsolidão – solidão essa que se torna mais assustadora ainda se considerarmostoda a explicação anterior – o medo da minha dimensão enquanto ser sexual nãoser reconhecida, o medo do desconhecido dos outros face a mim nesse contexto eque isso os afaste, como muitas vezes me chega a afastar a mim, por disforia epor revolta da distância face aos ideais.
“Fear has a specific target.What about anxiety? Well, anxiety is not as simple. Anxiety is usually a fearof the indefinite, something that we cannot always explain or even locate inspace and time. It is unpredictable, and often the anticipation of an unknownor not necessarily incumbent threat.”4.
No fim de contas, uma espiralexacerbada de preocupações sobre a desadequação, o isolamento e os sonhosgrandes demais para a realidade, que acaba por se tornar subcutânea e muitasvezes indefinida.
Mas é o afundar-me em tudo isso queme leva à terceira e última parte da performance. A aceitação, a resignação, oconformismo – embora nunca total porque já o sei cíclico, porque já me seicíclica a mim, e porque já me sei sonhadora sine qua non – é esse precipícioque me adensa e me torna maior, porque é também esse precipício que me permiteas ferramentas de fuga e de escape que me dão propósito, que me fazem valer osdias em que todo o resto me falha.
Nesse aspecto, pode até dizer-se sermeta-performance: (Unbreak)able foiem si mesmo um ponto de fuga, uma ponte para a aceitação induzida, enquantosimultaneamente acaba por versar sobre esse mesmo conteúdo, na sua parte final.
Em última análise, apraz-sepertinente expor conclusivamente o texto que escrevi enquanto enquadramentoteórico de defesa académica da performance, que creio encapsular da minhaprópria perspectiva este padrão sobre o qual nos debruçamos:
(Unbreak)able
“Quis despir-me. Na verdade, queriapoder despir mais que o corpo. Depois das roupas queria tirar a pele. Depois dapele queria arrancar a carne. Depois da carne desfazer os ossos entre os dedose os dentes. E desse nada que restasse, ver nos meus despojos até onde sedemarca a minha diferença. Isto sou eu. Não sei o que isso quer dizer. Não seia forma certa de me olhares, não há forma certa de me olhares, não há formacerta de coisa nenhuma, era por isso que não sabia como fazer nada disto.Partiria tudo do pressuposto do que vês quando me olhas. E a verdade absolutade mim, nem eu a tenho.
Uma pessoa, por acaso numa cadeira,ou uma cadeira com uma pessoa? Isto sou eu. Há 22 anos que ansiava pela minhaprópria libertação. Descobri a arte como espectro das minhas prisões. Oalimentar e o alimento circular dos meus fantasmas. Tempos a fio procurei umgrito de fénix. Mais tarde percebi ser cíclica. Caminhar lado a lado com amorte, respirar cara a cara com o frágil, transpirar pele a pele com o vácuo, éisso que me renova, é isso que me mantém. Será um dos meus poucos vícios,injectar sal nas feridas.
Quis mostrar esse tanto mais. Para láde posto em causa o diferente e o igual, o que fica por ver. Não sabia como. Omeu corpo, por si só, grita teses demasiado alto para que o resto sobressaia.
Então, quis ir mais longe ainda: fizda nudez ferramenta, das cicatrizes néones para um olhar aberto, dasdeformidades um púlpito por onde te trago a olhar-me desde mim. E despojei ocaminho expectável do resultado artístico. Ao que em mim há de poeta, retirei apoesia. Deito-me por terra, o nu do corpo espelha apenas a erupção que há-devir. Faço da sujeição à minha própria infimidade desmascarada, despudorada deartifícios, o veículo para a minha própria libertação.
Era isso que me faltava – não erampoemas, não era a demonstração óbvia do físico per si, não era o simbolismoartístico de uma identidade fluida de género, ou o fio da navalha da morte –isso é o que já sou todos os dias. Faltava-me a crueza de me deixar aoprecipício de mim, puxar da raiz de todos os traumas e deixar que a realidadetomasse o seu curso de explosão. Por uma (e de uma) vez, sem estéticas, ser-meveículo e permitir-me a chorar todas as lágrimas. Incorro no risco do sufocantedemasiado, ciente disso como na vida, acompanhar-me-ão os que souberem ficar,do maior resto não rezará a minha história. Hoje enfrento os meus fantasmas,cultivá-los-ei alimentados da minha pele, suor, lágrimas, e tudo o mais queeste deliberado incurso no precipício proporcionar, para que jamais me deixem.É deles que voo. A minha vidaé isso – vertigem.”
Dissertação produzida como proposta de avaliação à Unidade Curricular de Sociologia das Artes do Espectáculo, da Licenciatura de Estudos Artísticos - Artes do Espectáculo, docente Anabela Mendes, Faculdade de Letras da Universidade de Lisboa, 2018.
"Quis despir-me. Na verdade, queria poder despir mais que o corpo. Depois das roupas queria tirar a pele. Depois da pele queria arrancar a carne. Depois da carne desfazer os ossos entre os dedos e os dentes. E desse nada que restasse, ver nos meus despojos até onde se demarca a minha diferença. Isto sou eu. Não sei o que isso quer dizer. Não sei a forma certa de me olhares, não há forma certa de me olhares, não há forma certa de coisa nenhuma, era por isso que não sabia como fazer nada disto. Partiria tudo do pressuposto do que vês quando me olhas. E a verdade absoluta de mim, nem eu a tenho.
Uma pessoa, por acaso numa cadeira, ou uma cadeira com uma pessoa? Isto sou eu. Há 22 anos que ansiava pela minha própria libertação. Descobri a arte como espectro das minhas prisões. O alimentar e o alimento circular dos meus fantasmas. Tempos a fio procurei um grito de fénix. Mais tarde percebi ser cíclica. Caminhar lado a lado com a morte, respirar cara a cara com o frágil, transpirar pele a pele com o vácuo, é isso que me renova, é isso que me mantém. Será um dos meus poucos vícios, injectar sal nas feridas.
Quis mostrar esse tanto mais. Para lá de posto em causa o diferente e o igual, o que fica por ver. Não sabia como. O meu corpo, por si só, grita teses demasiado alto para que o resto sobressaia.
Então, quis ir mais longe ainda: fiz da nudez ferramenta, das cicatrizes néones para um olhar aberto, das deformidades um púlpito por onde te trago a olhar-me desde mim. E despojei o caminho expectável do resultado artístico. Ao que em mim há de poeta, retirei a poesia. Deito-me por terra, o nu do corpo espelha apenas a erupção que há-de vir. Faço da sujeição à minha própria infimidade desmascarada, despudorada de artifícios, o veículo para a minha própria libertação.
Era isso que me faltava – não eram poemas, não era a demonstração óbvia do físico per si, não era o simbolismo artístico de uma identidade fluida de género, ou o fio da navalha da morte – isso é o que já sou todos os dias. Faltava-me a crueza de me deixar ao precipício de mim, puxar da raiz de todos os traumas e deixar que a realidade tomasse o seu curso de explosão. Por uma (e de uma) vez, sem estéticas, ser-me veículo e permitir-me a chorar todas as lágrimas. Incorro no risco do sufocante demasiado, ciente disso como na vida, acompanhar-me-ão os que souberem ficar, do maior resto não rezará a minha história. Hoje enfrento os meus fantasmas, cultivá-los-ei alimentados da minha pele, suor, lágrimas, e tudo o mais que este deliberado incurso no precipício proporcionar, para que jamais me deixem. É deles que voo. A minha vida é isso – vertigem."
(Texto produzido para contextualização do processo criativo da performance (Unbreak)able: - Estudos de Performance - Licenciatura Estudos Artísticos, Artes do Espectáculo, FLUL 2017.)
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.
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.
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)
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.
