From "It only happens to others... " to "I am a proud Sitting Volleyball player"

“I just hate myself. I hate me, because I hate this strange body, a body with no legs. I am awful! Life can never, will never be the same again. I mean, who is going to want me like this? I am a woman without legs. How am I going to take care of my children and how can my husband love me, like this?”

See, Carla, my two legs had to be cut off because I was unfortunate enough to eat some food with a nasty virus. Nobody can ever be prepared to that! When I woke up in the hospital without my two legs, I just wanted to die! And those thoughts were going round and around in my head all the time!
But day by day, I just kept going. I was going every day to physio during one year to learn how to walk again with my prosthetic legs and one day my physiotherapist told me about Sitting Volleyball. “No way! I will never show my stumps to anyone! They are just too ugly to be shown! I can’t! I am so ashamed!” When I realised that other people who had their legs amputated were going to that sport thing however, I decided to give it a go. This was one year after that unfortunate "accident" with food.
I asked my dear friend from childhood to go with me to training… I thought that probably she would say no...But she accepted...and finally I understood why she was avoiding me. "I am so happy I can be with you and we can do something fun together. I was so sad for you. I just did not know how to help you dealing with something like that."-she told me after a couple of practices.  

I must tell you, it was amazing! Many people had amputations, other players had other impairments and many others did not have any impairment. There were eyes, lots of eyes looking around, but nobody seemed to be bothered by the look of stumps where there should be legs instead. Those eyes were not judging anyone. All over the walls, there were “legs”, most of them still dressed with the trousers which people use to hide their impairment in their “normal” lives.

In the sports hall, people were getting undressed and changing into their sport clothes in front of everybody; they were putting their socks on the stumps and talking about it as if it was the most natural thing in the world. “Hey, come here! What’s your name? What happened to you? Tell us?” My accident, the usual “elephant in the room” became suddenly just something that happen, similar to the other’s something that happen which changed the lives of many other people in the Sitting Volleyball training. And you know what shocked me the most? They were in fact happy! Well, I guess they were as happy as anyone can be… Without saying anything, I just received the best lesson of my life. That I was alive, that I had an opportunity to enjoy life with the people I loved, and that I had no right to waste it by feeling sorry for myself! And feeling the blood running wild in my veins… feeling physically exhausted and my muscles aching... that was just wonderful! I still had a body! A body that works!
I wish I could have known sitting volleyball before! I always thought of disability as something tragic! Something that just happened to others, not me! I guess I never thought I could one day lose my two legs! So, I just stayed away from it! I wish I had learned before that there is life after tragic events like mine! I wish I had known more people with disabilities at school! I wish I had played more disabled sports…Perhaps I would be more grateful and happy to be alive, even though I lost my legs! Anyway, now I am ok. I have a new family in my club and I am even proud of my prostheses! I am now a Sitting Volleyball player!

 

                                          Portsmouth Sharks Sitting Volleyball club (UK)

Non-creative fictional testimony, created from several different stories told by sitting volleyball players from England.

The mirage of autonomy

I met my colleague Jerry on a sad, rainy and gloomy day just in front of my residence hall, in the beautiful park where was located part of the University of Leuven.
I had just travelled from Portugal to Belgium to start my master in adapted physical activity. I had my suitcase as full of ignorant assumptions as of good intentions. Jerry was just coming from the supermarket with some bags hanging from the handles of his wheelchair when I introduced myself to him.
One of the conditions to stay in that residence hall was that non-disabled residents would “help” other residents with impairments. Jack was the colleague I was supposed to help. Anyway, at the time I had had no contact with people with impairments before, similar or different to his. I had no idea of how could I “help” him and I was daunted with the thought of messing up: “Hi, Jack! How are you doing? I have heard of you already. Michele told me that you are a very autonomous person.” “Oh, yeah. I do fine, I guess!” he replied, coldly. 

So, from everything that I could possibly say, I had stupidly decided that talking about autonomy was the best way to connect with a person who was paraplegic.  I guess I did it because I presumed that the worst thing about being paraplegic was the loss of autonomy for everyday life tasks. I guess I was also telling him that I had the best expectations on him, so I would assume that if he needed something he would ask. The truth is, I was terribly scared of offending him by helping too much or of offending him by not helping him with things that was obvious he needed help with.  I don't know why I was afraid of offending him… I guess I just thought that because he was “disabled”, he would be especially sensitive and therefore I had to have extra care.
Actually, during the 5 months we were living in the same residence… Jerry and I became good friends who more often than not were firing knifes at each other. Anyway… during that time we learned to deal with each other. The most important lesson about disability it was Jerry who taught me, every time he threw stones at the ducks “they are so many, that if we throw a stone randomly, we will get some food for lunch”… or when he was scarring away my beautiful friend cat just to annoy me. Or when he tried to convince me that he absolutely needed a chocolate bar from the supermarket and so I should go there, because he was too tired to push his chair… The most important truth about disability Jerry taught me was just that a disabled person can be a bastard or an angel as much as any other person. It took me some tours to the supermarket but fortunately, no assassinated ducks to learn this lesson…
Jerry was also someone who was always there to listen, to laugh, to argue, to keep me company and console me when I doubted that leaving my country had been a wise step. What he taught me which I hadn’t been able to learn until then, was that no one, absolutely no one is completely autonomous. That this fantasy of autonomy is what separates us from our true nature. I was abled and supposedly autonomous. Jerry was paraplegic, and supposedly dependent. What a monstrous misunderstanding! In the bigger picture of what it truly means to be human, I and Jerry were just two human beings with slightly different outfits… and our relation full of quarrels and reconciliations, offenses and apologies. Everything was exactly right, then! Just as in any relation between two human beings.
These days we still talk and thankfully we treat each other as badly as ever…
But why did it take me 35 years to learn this lesson? Where were people with disabilities hidden while I was growing up? Why did I not learn more about disability and how to behave around people with impairment earlier? Where were the 10% of people with impairments while I was growing up? Where are they now? How can we learn about the difference that disability presents so that people with and without impairments are not afraid of each other? And what does all of this have to do with sport? For my next posts… 

Leuven, October 2008 

 

Do Paralympics empower people with impairments?

Os Jogos Paralímpicos ajudam as pessoas com deficiência?


Teresa, one leg amputee and Sitting volleyball thinks so:
Well, personally Paralympics have helped me to overcome the fear of exposing my impairment. Because I am an athlete, I am saying to society that I am strong, that I am capable, that I am not inferior. In a way, I think the only reason I expose my prothesis is because I have another identity to offer besides being disabled. I am disabled but I am also an athlete. I have proven my value, I respect myself more for that and people respect me more. I could have stayed at home, after my accident, but no. Me, that had never physically active while I was abled, I am now a Paralympian. I could easily just have stayed at home, feeling sorry for myself, but I am a fighter. I have proven my value. I think Paralympics are important to show other people with impairments who stay at home doing nothing and living on benefits that they can still do something, if they try hard enough!

Teresa, amputada de uma perna e jogadora de sentado voleibol pensa que sim:

Bem, no meu caso, participar nos Jogos Paralímpicos ajudou-me a superar o medo de expor a minha deficiência. Porque sou atleta, estou dizendo para a sociedade que sou forte, que sou capaz, que eu não sou inferior. De certa forma, acho que a principal razão para eu não ter medo de expor minha prótese é porque eu tenho uma outra identidade para oferecer além de ser deficiente. Eu sou deficiente, mas eu também sou um atleta. Eu provei o meu valor, respeito-me mais por isso e as outras pessoas também me respeitam. Poderia ter ficado em casa, após meu acidente, mas não. Eu, que nunca tinha fisicamente ativa quando não tinha qualquer deficiência, agora sou uma atleta. Eu poderia facilmente apenas ter ficado em casa, sentindo pena de mim, mas eu sou uma lutadora. Provei o meu valor, que sou capaz. Eu acho que Jogos Paralímpicos são importantes para mostrar a outras pessoas com deficiências que permanecer em casa sem fazer nada e vivendo de subsídios do Estado não é opção; que eles podem ainda fazer alguma coisa, se eles se esforçarem o suficiente! Eu sou um exemplo disso!

On the other hand, Adrian shows a darker side:
Adrian, living with multiple sclerosis, survives with a pension from the government which is barely enough to pay for a personal assistant and for the most basis expenses. After his health condition got worse he was forced to leave his job and had to hire a person to live with him permanently.

Por outro lado, Adrian mostra um lado mais sombrio:

Adrian, que vive com esclerose múltipla, sobrevive com uma pensão do governo, que é o suficiente para pagar um assistente pessoal e as despesas mínimas para sobreviver. Depois que o seu estado de saúde piorou ele foi forçado a deixar o emprego e teve que contratar uma pessoa para viver com ele permanentemente. 

Paralympics? How does that help me? First, any assemblance between the lives of those athletes and mine is pure coincidence. I could not see in the TV images anyone whose impairment ressembles to mine. Secondly, I barely have energy for the tasks of moving around the house, let alone for sport. And thirdly, I would doubt that anyone of the Paralympians is counting pennies everyday to make sure the money is enough to live. And is if that is not enough, I am looked by others as unworthy, as the one who "gave" up. I can see it in the way they look at me. People see athletes with all sorts of impairments on the TV and they go on thinking that we are all like that, that we can all go out and about, to do sport, and therefore, why not doing some work as well? After the Paralympics, people started to ask me why don't I go and do some Boccia or something... Well, I am sorry if I disappoint you, but I am too busy trying to survive! I'm sorry if I dont have time, motivation or inclination for sport!

Paralimpícos? Como é que isso me ajuda? Primeiro, qualquer semelhança entre as vidas daqueles atletas e a minha é pura coincidência. Eu não consegui ver nas imagens de TV um atleta que fosse com uma deficiência semelhante à minha. Em segundo lugar, eu mal tenho energia para as tarefas de se mover ao redor da casa, muito menos para o desporto. E em terceiro lugar, duvido que algum daqueles atletas passe cada dia contando o dinheiro para se certificar de que é suficiente para viver. E ainda por cima, depois dos Paralímpicos, eu sou olhada por outras pessoas, incluindo pessoas com deficiência como indigno, como aquele que "desistiu". Pode vê-lo da maneira que eles olham para mim. As pessoas vêem os atletas com vários tipos de deficiência na TV e ficam a pensar que somos todos iguais, que podemos todos sair de casa quando quisermos para fazer desporto, e por isso, porque não trabalhar também?

Depois dos jogos, começaram a perguntar-me por que razão não tentava ir fazer um pouco de boccia ou outro desporto menos exigente… Peço muita desculpa por desapontar as massas bem-intencionadas, mas estou demasiado ocupado a tentar sobreviver! Perdoem-me se não tenho o tempo ou inclinação para fazer desporto!

(these are fictious characters, based on many online comments made by people with impairments and on my own talks with Paralympic athletes)

(Estas são personagens fictícias, baseadas nos muitos comentários on-line sobre a problemática e a partir das minhas conversas com muitos atletas Paralímpicos)

The right to dream! O direito a sonhar!

Hoje morreu um dos grandes heróis desportivos portugueses, Eusébio da Silva Ferreira. Eusébio foi e é para muitas gerações um catalisador de sonhos, muitos meninos cresceram ambicionando um dia poder ser assim, a paixão pura em cada passe, finta e pontapé na bola. Eusébio e futebol eram um só.

Today one of the great Portuguese sporting heroes, Eusébio da Silva Ferreira, died. Eusébio was for many generations of football lovers a catalyst of dreams! Many boys have grown aspiring to be one day like him, pure passion in every pass, dribble and kick. Eusébio and football were solely one. 

 

Eusébio da Silva Ferreira (Benfica)

Feita a devida homenagem, ponho-me a pensar nos meus ídolos. Para mim, Miguel Maia, a grande lenda do voleibol português, a quem eu recorria (através de jogos filmados em VHS) quando sentia que talvez a minha paixão pelo voleibol fosse muito maior que o meu talento. Eu era menina, sim, mas tanto eu como o Miguel éramos baixinhos e ao vê-lo eu acreditava que talvez com muita paixão eu conseguisse ser tão boa quanto sonhava. Não era, e nem consegui durante a minha carreira superar a desvantagem da altura. Mas a esperança e muitas vezes ver o Miguel a jogar fez-me acreditar o suficiente até perceber que o mais importante eu já tinha. Em tantos momentos da minha vida, eu e o voleibol erámos um só e nesta relação eu fui imensamente feliz. Também tinha outros ídolos, jogadoras, menos conhecidas, com quem me identificava porque também eram assim baixas como eu que conseguiam ser extraordinárias, a Guida, passadora maravilha dos Estrelas da Avenida e outras… Numa altura em que tudo era possível para a minha vida, eu tive estas estrelinhas para me mostrarem aquilo que eu poderia sonhar para mim…

Made due tribute to this legend, I think of my idols. For me, this hero was the great Miguel Maia, Portuguese volleyball legend (still playing), from whom I would inspiration (through games recorded on VHS) in times when I felt that perhaps my passion for volleyball was much larger than my talent. I was a shorty girl, yes, but so was Miguel and seeing him playing I thought that maybe with work and passion I could be as good as I wanted. I wasn't, and I during my career I could never  overcome the disadvantage of height and be a national player. But Miguel made me believe that my dream was possible long enough for me to realize that I was already living my dream, because in so many moments of my life, Volleyball made me the most happy person in the world.
I also had other, lesser-known idols, with whom I identified because they were also too short for the sport and despite that, excellent players (Guida, Estrelas da Avenida Setter and others... ) The point is, at a moment when I was building my dreams up, I had some bright stars proving me that they could one day become true.
 

Miguel Maia 

My first team at school (I am the first from the right, top row)

Por isso, neste dia em que o Eusébio nos deixou, e percebendo que a paixão que ele sentia pelo futebol seria semelhante àquela que eu sentia (e ainda sinto) pelo voleibol eu penso naqueles que, por pequenez nossa, de todos, são privados da oportunidade de sonhar em serem grandes desportistas. Penso na falta de heróis desportivos que possam guiar os sonhos das pessoas que por algum motivo são diferentes do protótipo do atleta perfeito.

That's why, on this day that Eusebio left us, and realizing that the passion he felt for football would be similar to how I felt (and still feel) for volleyball, I think of those who are deprived of the opportunity to dream of being a great sportsperson. I think in the absence of sports heroes that guide the dreams of people who for some reason are different from the prototype we all hold of the perfect athlete.

Oscar Pistorius foi, até recentemente, o mais próximo de ser um herói desportivo no mundo Paralímpico… Porquê? Porque Pistorius provou que mesmo com deficiência, uma pessoa ainda consegue competir com pessoas “perfeitinhas”. Mostrou que, com ambição, esforço e atitude vencedora, as pessoas com deficiência podem “ultrapassar” as suas limitações. Acontece que para muitas pessoas com deficiência, a sua deficiência é parte de quem são, não são “limitações” que possam ser ultrapassadas, nem defeitos de que tenham de se envergonhar ou esconder. Da mesma forma que sobre muitas jogadoras se ouvia; "Ela ]e mesmo boa. Joga como um homem!" também o valor dos atletas com deficiência parece depender de quão próximo ele se aproxima dos atletas "normais": "Ele é o Bolt dos Paralímpicos!" Já é vai sendo tempo de sermos capazes de apreciar os atletas Paralímpicos por quem eles são, sem necessidade de comparações com outros que julgamos ser os "verdadeiros" atletas!

Oscar Pistorius was, until recently, perhaps the closest person to being a  mediatic sports hero in the Paralympic world ... Perhaps because Pistorius has proven that even with a disability, a person can still compete in the “able bodied” world. He showed that, with ambition, effort and winning attitude, people with disabilities can "overcome" its limitations. It turns out that for many people with disabilities, the disability is part of who they are, not "limitations" that can be overcome, nor defects of which they have to be ashamed of hide from. The same way that I have spent my life listening things like “this and that player is great! She really plays like a man!”, the closer a sportsperson with impairment is from an able bodied athlete, the more valued (s)he is: “He really runs like Bolt!“
For when will they be valued just by who they are without need for comparison with "able-bodied" athletes?

Oscar Pistorius

Olhando para Eusébio, muitos meninos que não tinham ténis nem bolas caros, sabiam que poderiam ainda ser grandes futebolistas, porque Eusébio também foi um menino que jogava descalço com bolas de trapos. Eu pude sonhar porque eu via pessoas baixas que saltavam muito e jogavam maravilhosamente. Que sonho desportivos podem sonhar os meninos/meninas que nasceram sem uma perna ou um braço, com paralisia cerebral ou com qualquer outra diferença que os afasta tanto dos heróis desportivos que nos habituámos a idolatrar? Estamos muito atrasados na correção desta injustiça. Não sei bem como ela poderá ser corrigida, mas porque não começar por práticas desportivas que incluam todos nas escolas, mais desportos paralímpicos na televisão e mais desportos criados de raiz para corpos que são apenas diferentes? Estes são passos essenciais para mudarmos o nosso o entendimento do que é desporto, excelência desportiva, e aceitarmos e compreendermos a excelência desportiva de atletas com corpos diferentes!

Para quando pensarmos o desporto e a diferença de forma diferente para que ninguém tenha violar a sua essência para ser valorizado? É que não há violência maior do que roubar o direito a sonhar..Alguns diriam que é apenas desporto, esquecendo que para muitas pessoas, culturas e sociedades, desporto é MUITO!

Holding Eusebio as an example, many boys who had no tennis or expensive balls, knew they could still be great footballers, because he was once a boy who played barefoot with balls made of rags. I could dream of being a great player because I saw "shortish" athletes playing volleyball beautifully. And what about boys/girls who are born without a leg or an arm, or with cerebral palsy or some other "differences"? Which sporting dream are they allowed to dream, if we only value the athlete who is male, and possess a "perfect" body? And what greater violence that being stolen from the possibility to dream?

Where are the sporting heroes proving people who are more different than what society accepts as tolerable that they can there is a place in sport for their dreams? I believe these heroes will rise only when we are able to think about sport and difference in a way that nobody has to be someone else to be recognised as good. When will this happen? I don’t know but we are already running late to have in schools sporting activities that include all children with no exception, more Paralympic sports on television, more new sports tailored to the specific characteristics of impaired bodies… these are important steps to start looking at sport, sport excellence and sportspeople with impairments differently, without so strong hiearchies.

It is only sport, some would say, without understanding that for many people, many cultures and societies, SPORT is a LOT!

E aqui ficam alguns dos heróis paralímpicos portugueses. Obrigada pela vossa perseverança!

And I leave you with some Portuguese sport heroes who happen to possess some impairment. Thank you for persevering!

 Carlos Lopes (athletics) and Nuno Alpiarça (guide)

 

Cristina Gonçalves, (Boccia)

 

Susana Barroso (Natação e Boccia)

 

 

Portugues e and English

Este blog é um espaço onde vou reunir os meus pensamentos, ideias e experiências que penso serem importantes para que actividades de movimento possam contribuir para a aceitação da diferença e para desenvolvimento de cada ser humano e da espécie humana em geral. Vou tentar fazê-lo em português, a minha língua mãe e em Inglês, já que grande parte da minha formação académica foi realisada nesta língua.

Espero que gostem do blogue e que aceitem o meu convite para comentar qualquer assunto relacionado com o tema, fazer sugestões e tecer crítica, se for caso disso!



In this blog I will present some of my thoughts, ideas and experiences which I believe can be important to understand and respect difference and therefore for the development of each human being and humankind. As a proud Portuguese, and because these ideas are important also to the Portuguese speaking world, I will try to write in both languages. I apologise in advance for any offence I may cause to the English language, that I also learned to love, but which unfortunately, I haven´t conquered to my satisfaction yet.

I hope you enjoy this blog, that discussion is promoted and please take some time to comment on any issue... That will be very much appreciated.