STORIES

Artists with OI: Ditte Johansen

Can you tell us a little about yourself?

My name is Ditte, and I’m a 25-year-old woman, that is born – and still living – in Denmark. I’m working as a writer, and besides my ordinary and boring adult life, I’m filling my days with lots and lots of hobbies; I’m an actor, an author and “a public person” in some ways when the opportunity presents itself. I love having a lot on my plate, so I’m always busy, busy, busy!

When did you decide to publish a poetry book?

Well, that simply wasn’t a decision I had to make. I’m born with a creative nature and an artist’s soul, so writing has always been an innate interest. And if you love books and is writing yourself, it is my conviction that you will cross the poetry genre minimum once in your life. 

How did you do the publishing?

Since I was 18 years old, I’ve tried to publish my stuff at all costs. But all the profiled publishing companies wouldn’t touch any of my scripts even from a distance. I knew what kind of authors they wanted, but that wasn’t me. And instead of changing my personal touch and risking to lose myself in the process, I simply gave up. My integrity has always been my first priority, so I just locked my scripts away in a drawer and forgot all about my dreams. Until the day, when my boss introduced me to one of her friends; a publisher who was only interested in poetry. So I took the chance, and he LOVED my script! And the rest is – well – history…

Why do you deal with psychosocial aspects and OI in your poems?

As I see it, OI and psychosocial aspects are just two sides of the same coin. If you – as a person with OI – are telling everyone that you can’t acquaint yourself with some kind of psychosocially related problem, you’re lying. Being different; being a minority will always create some frustrations associated with having OI, be in a lot of pain, etc. I wanted to tell an honest story from a disabled person’s perspective. There’s a huge lack of honesty associated with being disabled. The stories you’ll probably find nowadays will generally be these nauseating heart-warming stories, that aren’t even telling the (whole) truth. 

What projects are you currently working on?

As I said before, I love having a lot on my plate, so I’ve currently got three projects that I’m working on. I just signed a new contract with my publisher for my next poetry collection, which will be a follow-up to my first one. I’ve also finished the English translation of my first book – “Puppet Infirmary”. Both of them are getting (re)published by the end of the year. So all you English-reading people – there’s a lot in store for you! Meanwhile I’m working on a novel, but that project may not happen for a long time. But it will come sooner or later. I’m stubborn and hard-working.

What role does the artist have in society?

I don’t think that art should be art, just because it could be. Or that you should be an artist because you can. Art is like air – even though you’ll never see it, you can’t live without it. If society was a big vase, art would be the glue that’s sticking all the broken pieces together over and over again. If we eliminate all kinds of art – the society would corrode and crumble away. Being an artist is an important job – maybe one of the most important ones, because you’re the voice of other people. Whether you paint or write, you are channelling emotions through your book or painting, that they may not be able to express themselves. You’re telling their stories for them, so to speak. And that’s why artists are so important to society – because they’re expressing all your personal feelings, even when you can’t do it yourself.  

Is there anything you like to tell our readers?

Please be honest, with yourself and with others! The stories you tell, may be other people’s guidelines. And if what you say isn’t true, you’ll mislead them. If life is hard – tell them! If life is freaking awesome – tell them! We all have the responsibility to teach the next generations what life is about and how you live it. With or without OI – that doesn’t matter. No one is satisfied with a soothing lie. 

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The art of being unhappy

Can we be unhappy or do we keep on with that unbreakable spirit which people with OI all seem to have? Why do we want to be so happy? Think about this with me for a while!

Imagine: you were a 2 year old toddler and your mother or father asks you to draw something simple like a tree on a piece of paper? Right, you grab a pencil and start to move the pencil over the paper making scratches while you look your mother or father into the eyes waiting for their affirmation… 

How did your mother or father react? Of course she or he put on the high pitched voice and produced some words like: “Wow, what a nice tree you just designed! That’s amazing!”. Nothing on the piece of paper has the shape of a tree… 

But that’s what happened right? 

We do this all the time towards toddlers because it makes them happy. And we as humans want to make others happy. Even if what they do is not good or correct. 

Happiness is imprinted from the moment we start to communicate with each other. Since we are born: Baby don’t cry, be happy!  We believe that when we feel happy, we feel better. These days, everybody has a pressure to be very happy. We are all on social media, seeing how everyone else is so happy. 

But to be honest, if I look around me, I see a lot of the opposite. Especially in the age group between 15 and 35. The ones who have spent their youth on social media. A lot of friends my age and even a lot younger are suffering from alcohol and drug addictions, depressions and burn-out. And it starts a lot earlier than it used to. 

We all want so much. We want good grades in school, and good scores on the sports team, and the boy- or girlfriend who is the most popular and perfect parties!  

When we graduate and look for a job, we want the best job we can get. With all the extra bonuses we can get, like a car, a phone and a laptop. We want flexible hours, so we can arrive and leave work when we can. And it goes on. To get that job, we need to search for a long time, and I see that young people just stay home waiting for that job to come along. Instead of doing something else which is not that perfect, we can’t handle the fact that we would be a little unhappy with that temporary job. 

Maybe, for young people with OI it’s different? Because we have our relatively severe disability, we can’t expect things to go so smoothly. Like finding the best girl- or boyfriend, or the best job we can get? We are resilient enough to fight against things that doesn’t go so well in our lives. 

Are we…? 

In 2016 I was in Orlando, Florida attending the national American OI-conference. I was there with around 350 others with OI. I’ll never forget the first evening when we did a “walk” in the hotel complex we stayed in. For me it was very weird to go out and shout about how great it was to have OI. I was a little bit shocked because of the enormous amount of other people with OI and the extreme positive approach towards OI.

But to be honest. After 3 days being there, hearing all those positive ideas about having OI, I started to believe it a bit. And I understood that it is a lot easier to cope if you can regard OI as a kind of a blessing. However weird that might sound… 

So yes, it is possible that we can “get up again” more easily after a negative life experience than people without OI. Because we have learnt how to do it since an early age. 

But when you have to do this many times during your lifetime, sometimes it all becomes too much. And then we have to be aware and allow ourselves and others to feel unhappy. It is not a blessing to have OI after fracture number 142 or so. OI can really be a pain in the ass, or let’s say in the bone… 

Maybe we need to learn the art of being unhappy in order to better understand our own feelings…?  

Written by Stephanie Claeys, OIFE Youth Coordinator

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How Apple Watch helps me stay healthy

“Jacob Wittorff has called the alarm center after Apple Watch detected a bad fall.”

That message lands late at night on May day 2019 on my parents ‘and brothers’ phones. Shortly before, I was pushed home in my wheelchair from the football cup final at the stadium. However, the evening comes to an abrupt end. I was slightly drunk, on my way through the rainy streets and I didn’t notice the curb; suddenly my wheelchair is upside down. At the crash, I break one of the tibias and hit my head, but my Apple Watch instantly detects the fall, automatically dials the alarm center and sends the text message to relatives whom I have specified as contacts in advance.

Apple calls this fall detection feature, and it’s available on the two latest Apple Watch models (Apple Watch Series 4 and Apple Watch Series 5). Fall registration is one of the reasons why I, as a wheelchair user, do not want to manage without my Apple Watch. I live alone in my apartment on Nørrebro, Copenhagen, and one of the things I fear most is that one day I fall and am unable to even get up or call for help. But I don’t have that fear when I have my Apple Watch on my arm.

Special features for people in wheelchairs
Fall registration, however, is far from the only feature of the watch that can benefit wheelchair users. Since launching the first edition of Apple Watch in April 2015, Apple has equipped the watch with ever-increasing features that appeal to people trying to live an active life in a wheelchair.

For example, the clock will notify you if you have been passive for too long in the last hour. In the first edition of Apple Watch, the message read: ‘It’s time to get up and walk.’ But as I said with a laugh to a friend when I got my first Apple Watch in 2015: “I feel a little like my watch is trolling me when I get that message”.

By 2016, Apple launched a new approach specifically for people in wheelchairs. Now, in the Apple Watch app, you can indicate that you are a wheelchair user, and instead you will receive a message that reads, “It’s time to wheel around.” The message is a call to make you move and get your blood flow going. I use it myself as an opportunity to roll out and grab a glass of water or a cup of coffee as I sit in front of the computer at my work. If you use an electric wheelchair, you will hardly benefit from rolling a small ride, but you may instead see it as a call to do a few quick stretching exercises.

Special exercise programs
Apple has also designed a number of exercise programs specifically for wheelchair users, which I use myself when going around Copenhagen. The exercise programs for wheelchair users do not count steps but pushes you make with your arms. In this connection, the calculation for burning calories has also been adjusted so that it is now adapted for wheelchair use instead of walking, running or cycling.

A piece of advanced electronics
Apple Watch also contains some technology that you won’t find in your phone. This applies, among other things, to the watch’s heart rate monitor, which continuously measures your heart rate. It doesn’t just happen when you exercise. It also measures your heart rate during the day. Therefore, in the Apple Health app, you can also constantly find your ongoing heart rate measurements, as well as your resting heart rate and your heart rate variance.

The clock also gives you alerts if your heart rate becomes very high without being physically active at the same time, and it also warns you if your heart rate becomes very low. At the same time, the two latest editions of Apple Watch also have a built-in ECG that enables the watch to take a cardiogram and thus identify irregular heartbeats. However, it is worth noting here that the ECG built into the Apple Watch has only a single built-in electrode, while the cardiograms made in the hospital use 12 whole electrodes located at different locations on the body. Therefore, Apple also emphasizes that the ECG meter in an Apple Watch cannot be used as a replacement for a professional ECG.

For me, over the past many years, Apple Watch has helped me take better care of my health. But if you are tempted to buy an Apple Watch, there are a number of things to keep in mind. First, the watch requires that you also have an iPhone. For example, if you have an Android phone, you will not be able to use the watch. In addition, you should also be aware that the fall detection feature only works if you have an Apple Watch Series 4 or the latest Series 5, and if you are under 65, you must also actively choose to turn it on in the provided app.

Written by Jacob O. Wittorff, OIFE-member Denmark (Translated by Coreen Kelday)

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Coronavirus & the toxic narrative of disability

Every catastrophic film, every war novel, every graphic novel about dystopian futures is for me an opportunity for an imaginative exercise on my death. If you have been a kid with a disability and then a girl with a disability, to finally become a woman with a disability, then you have grown up with the request to remain rational.

During evacuation drills they teach you to stay in your place, not to hinder the escape of others and to wait for rescuers to come to save you. On the plane you will always be on the side of the window so that the people next to you can escape without having to step over you.

And no, you can’t get angry. You can’t even get too sad.

Emergency management is a science and you, aware of your physical condition, must understand that society is something complex and in every emergency the goal is to save the largest number of people who can then survive.

Embracing your limits is your duty, rejoicing in what you have, for the time you have it, is good practice.

Aiming for survival during a zombie epidemic would therefore be a foolish waste of time, better cultivating fantasies of heroic deaths in which your legacy will be the survival of your loved one rather than an entire community or group of children …

Coronavirus: How to reinforce a toxic narrative?


Then comes the coronavirus and you live a few km away from that town that everyone talks about because it is the epicentre of the Italian version of the contamination. And find out that no, now that we are at that point all that exercise done in your first 35 years of life is not going well for you.

Dearest world, dear television, dear journalist, dear expert in the most disparate scientific subjects, however praiseworthy your attempt to say that the coronavirus Covid-19 is a disease that is only lethal only for a low percentage of the population, you every time conclude, by saying that I will die.

«Coronavirus is dangerous for weak people … elderly people … people with previous respiratory diseases … cancer patients»

I didn’t understand it right away. At the first interviews it seemed to me that their words calmed me too. Or maybe I just wanted to be comforted. Also be considered a subject to comfort.

But we are not. I am not, nor are the older people, nor the cancer ones. We, all of us, are the examples that comforts others. We are so when we are called to be examples of life, endurance and wisdom (read under ableism).

We are such when we are asked to accept the fatal percentage of an illness in our ranks.

After all, we live so far from the idea of immortality and so in confidence with that of death, that it will certainly not be a great effort to accept the role of borderline cases in a collective narrative aimed at not questioning the power of the healthy.

A wasted opportunity

This moment could be used in many ways. This virus, its easy movement in the world, could become an occasion to remind us that we are human and as such we are fragile. We could have accepted all together that we are not immortal, not only we weak subjects but also that 40-year-old who feels the eternal power flowing in his bones.

It would have been nice for once to seek a more noble sense in a truly special moment. Perhaps an enlightened precedent would have been created, perhaps caring for oneself and others would have truly occupied the center of the world for some time. And since I’m playing a fantasy game, I like to go further and think that perhaps capitalism would have trembled, seeing its fake immortal and performing bodies waver.

We would all have been fragile. And we, who have always known fragility, swear that we would take care of you. But none of this happened…

We could have sailed together. Instead each one remained anchored to its reef and collective reflection preferred the more immediate consolation.

Maybe I will get sick and if the TV happens, he told me that I will most likely occupy that small percentage of hopeless. So since I have been organizing death since I was a child, I decided to write this article. I won’t be able to save anyone with my passing. And if it happens as they say, it will be lonely and far from heroic. But I want to tell you that while the virus sneaks around a few kilometers away from me, I read Laura Pugno who in her “In the wild” says:

“The savage is decided by us, it does not exist in nature, it is created when we close the front door, we define an inside and an outside (…) It comes by itself, from the wild, that it is dangerous”.

Written by Chiara Bersani, Italy (translation Anna Rossi)

 

 

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Artists with OI: Matt Shilcock

Who are you and what do you do?
My name is Matt Shilcock, I am a contemporary dancer and performing artist from Adelaide, South Australia. I have been creating and performing dance theatre works in festivals and locations around the world over the last 10 years. I predominately perform Contemporary Dance, but living with OI, I occasionally, jokingly, refer to what I do as ‘break dancing’.

My dance and choreographically practice is heavily influenced by what ever injuries and fracture (past and present) that I am dealing with and how I adapt my movement to care for these injuries and integrate my mobility aids. Living with OI, naturally, fractures happen frequently. Often I need to improvise mid performance to adapt to whatever my body is dealing with. Each performance within a season can be vastly different to the night before.

Why do you do what you do?
Originally, because dance classes are cheaper than physiotherapy, but dance has given me a better understanding of and relationship to my body and environment. Through dance I’ve gained a great movement vocabulary to assist me to prevent injuries and to sustainably keep going on with life when I have fractures.

What themes do you pursue?
Themes that I like to explore in my work include Shamanism, Alternative Healing, Medieval Alchemy and Trauma. For me, it’s important that art is a healing and empowering process for the artist and audience.

What kind of work do you most enjoy doing?
My favourite is improvised durational work. My longest work was a 6 hour “living sculpture” in a small gallery. I enjoy the endurance challenge of durational work and exploring the mediative state that comes from long periods of practice.

What role does the artist have in society?
I feel that the Artist’s role in society is that of a ‘liminal persona’. Liminal, referring to the space in between two things (eg. an open doorway – the threshold between two rooms, or the inside and outside). I feel that artists ‘empty’ themselves through their craft, becoming a vessel for their audience to interpret, relate and project themselves on a work, allowing them to process some aspect of their own individuality. In this way, the role the artist (or their work) is to hold up a mirror to society. The work I make, or the ‘mirror’ I hold up, will not allows reflect something that is conventionally pleasing to look at, but like eating our vegetables, sometimes the most unpleasant experience (the bitterest taste, the sharpest smell, the ugly painting, the painful dance) is the one that is the most beneficial to us.

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Rick Brink – Minister with OI

Since 2019, the Netherlands has an unofficial Minister of Disability Affairs. Rick Brink who has OI and is using an electric wheelchair, won this appointment during the broadcast of the television programme ‘De minister van Gehandicaptenzaken’ (The Minister of Disability Affairs). Brink was elected by a jury, including former cyclist Leontien van Moorsel, cabaret artist Vincent Bijlo and former Minister Ronald Plasterk, from six candidates.

Can you tell us a little about yourself?
My name is Rick Brink, I am 34 years old and live in Hardenberg, The Netherlands. When I am not busy working, I enjoy spending time with my family and friends.

How did you get your job as Minister of Disability Affairs?
In June of this year I was elected as the very first Minister of Disability Affairs by the Dutch viewers during a live television show aired by the Dutch broadcasting network KRO NCRV. I applied for the job in March, had to go through three selection rounds and made it through to the live show in June with 5 other candidates. Out of the one-hundred-and-thirty people who applied I became the first Minister of Disability Affairs.

How does a ‘normal’ day look like as Minister?
From the moment I was elected there has not been a normal day. I now represent the needs of the 2 million people with disabilities that live in the Netherlands. So you can imagine we, my team and I, are very busy trying to truly make a difference for all the people we represent. Every Monday we discuss the upcoming week, so I am well prepared. But still every day is different and often unexpected things happen. For instance, I can get a call if I can be a guest on a talk show the next day or do an interview, that wasn’t planned, that makes the evening news. But the majority of my days are spend talking to influential politicians, people with disabilities and organizations and interest groups.

What are your main goals as Minister of Disability Affairs?
My absolute main goal is to create a truly inclusive society. And I have three goals I hope will contribute to creating an inclusive society:

First of all, an inclusive start for children with disabilities, because I believe we can do better. It is my goal to create a society that is accessible to every child. This means a special focus on inclusive education and on inclusive playgrounds where children with and without a disability can play together. I believe when children with and without disabilities interact with each other from early on, this will reduce stigma and negative thoughts and support inclusion.

Secondly, in the Netherlands a lot of students with disabilities have trouble finding a suitable internship. This sometimes leads to them not being able to complete their degree. That is why I have set myself the goal of creating thousand internships for students with disabilities.

My third and final goal is to promote the visibility of people with disabilities in the media. People with disabilities are rarely visible on Dutch television and when they are, they are usually there to talk about their disability, not to talk about their talents or expertise. I want to change this. I want to focus on their abilities instead of their disabilities. People with an impairment are more than their disability, this is a part of them but not all there is to them. They have talents and it is high time these talents are recognized and seen. That is why we created De Koffer van Rick. In De Koffer van Rick we collect the CVs of talented people who also happen to have a disability. We will present these CVs to producers to help and encourage them to create more inclusive programs.

Den Haag, 3 december 2019 – Rick Brink with the Minister for Health, and youngsters promoting a project that encourages people playing games together. Photo: Phil Nijhuis

What are the biggest opportunities and challenges of having this position?
My motto is: We are not our disability, we are our talent! I hope that I, through this position and the fact that I have a disability myself, can contribute to changing the way people with disabilities are viewed in our society.

Is there anything you like to tell the readers of OIFE Magazine?
It is important that people with a disability are open about their situation. Some people recognize the condition I have and know what it entails, but there are many who don’t. In my experience, when people don’t know anything about the condition I have, people can get uncomfortable. They are unsure whether they can ask me questions, don’t know if and when to help me. So I tell them about myself and what I have. I explain the condition to them and how it affects me. By starting the conversation about my situation and how it affects me, people understand it better and are able to offer me the support I need. If you are honest and open about your situation, what you can and cannot do and what you would like others to do for you, you make life easier for yourself as well as for the people around you.

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Artists with OI: Veronica Tulli

Interview and translation: Anna Rossi

Can you introduce yourself?
My name is Veronica Tulli and my stage name is LuluRimmel. I live in Rome, Italy. I am a singer, songwriter and performer. And I am quite confident in saying this. But I do not hide that at least in Italy, this is quite a bold sentence. It is not that easy to do singing and performing for a living. Often it is not even considered a real job. You have to jostle and work really hard. I sing and perform in several shows of different nature, sometimes also dark and grotesque. The latter as LuluRimmel, my character: a doll that plays ukulele. I am also part of an acoustic duo with my partner Guido Maurizio Doria, called “Pancake Drawer”. In this project I have the chance to express myself more as a songwriter. We write together the lyrics and the music. And this is really the thing I love the most. I sing and play ukulele, and my partner plays the guitar.

In which way has OI brought you to arts? And how has this influenced your arts and you being an artist?
I am pretty sure I would have been an artist even without OI. Because I think that arts and music is a need that each one can feel in a different way. From a social point of view, I am sure that my projects have somehow an impact in the world of disability. It is like people can read a social and cultural statement in my art. I believe that music is simply just music, and that it has itself a powerful and strong message to overcome any obstacle and barrier. I sing and play because I love doing it. I do not care so much of being an example. I believe that telling people about myself and express myself through music have a meaning for the people that are listening to me or watching me.

Tell us more about the movie “Heart of a Doll”!
The project was created during an informal meeting with some good coffee together with Antonio Di Domenico, the director of the documentary. At the beginning it was supposed to be the first episode of a series: people with different backgrounds and different physical difficulties, talking about their arts and stories. “Heart of a Doll” talks about my life, mainly the artistic side of it. And it highlights the adventures, the losses, the victories…it is all authentic. It is the story of a girl following her dream, to be a full-time artist and making a living through it. We are now showing the movie in different theaters in Italy, but we would love to show it in other countries as well.

Do you have other upcoming projects?
For the time being Guido and I are focusing on our duo “Pancake Drawer”. We are thinking about recording an album, the first one with our own unreleased tracks. This is something we do really believe in, and we cannot wait to start working on it, we would love to sing more and more often and on as many stages as possible, both in Italy and abroad.

Why did you start singing and acting?
I would refer to myself more as a performer, to be honest even in the documentary there is not that much acting. I have attended some acting classes in the past, but never at a professional level. About singing, I have been singing since I first started to talk. As a kid I was always singing, it made me happy. When I was 17, I decided to do it in a more conscious and focused way and I decided to attend singing classes. I started because I needed to find my own way to express what I was feeling inside, music always made me feel the most deep and strong feelings, so I decided to sing.

Which are the themes and topics that are closer to you and that you often talk about in your art?
In my songs I often talk about my dreams and my hidden places. I mostly talk about love. Actually, I believe that every song ever written is somehow a love message. I talk about simple stuff that everyone can relate to and understand. Feelings belong to everyone. I would like that by listening to one of my songs people could say “Oh yes, it has happened to me as well. I have felt like that!

When I listen to music, there is always a song that can catch and express what I am feeling in that precise moment. It makes me feel better to know someone can feel what I also feel. To be honest there is not always a precise stated message, sometimes people just want to express what he/she is or feels.

What do you prefer between singing and acting?
When I play my character LuluRimmel the acting part is really important, but it wouldn’t mean much without the songs played with ukulele. I have fun playing this role of a doll. It’s never clear if she is really silly or if she fakes it, and laughs for no reason. It allows me to play with the first impression of people, with their prejudices about my disability which is physically quite clear and visible. When I sing and play with my duo, on the contrary, there is no character. I am myself with our songs. Acting is nice and fun. But honestly, the hardest and the best thing at the same time is being yourself without masks.

What is your most scary or dangerous work experience
There is this place called “Bottega degli Artisti” where I do perform every now and then. Every time I perform there, I end up climbing up some strange and potentially dangerous places. On a piano, on some kind of carts, on a bench, on some boxes, or a bookshelf…

Due to my short stature it is more spectacular when I am placed somewhere very high. Dressed up as a doll I keep myself still and then I greet by waving my hand to the audience when they come in, as they ask themselves if I am real or fake. Yes, this is or can be somehow dangerous. But I have fun and I am not afraid or scared.

Who is your favourite artist?
I do like many different artists for many different reasons. I do like Nirvana, Amy Winehouse, Johnny Cash, Elvis Presley, Lady Gaga, Beatles, The Cure, The Smiths, Marilyn Manson, Ghost, Slipknot and many others….What I like most is the background stories of some people or groups, their philosophy. As for the movies, I love Tarantino, all his movies and his genius.

What is your favourite piece of art?
Monet Waterlilies. I have seen them in Paris and I got emotional. I also used them as main topic of my final work at high school. I find them visionary and relaxing. The idea of Monet painting so many different versions observing the same thing or something that is always the same, but so different every time, is really fascinating to me.

What is or should be the role of artists in the society?
An artist has the privilege to leave a mark in the everyday history. The causes he/she supports and the messages that he/she spreads are heard from much more people, especially if he/she is a well-known artist. What is really perfection is when by only expressing himself/herself an artist can bring and spread a message for all, a message of equality and diversity.

I believe it is important to fight for rights for everyone even when we are not personally or directly involved by a problem or a topic. An artist with a big audience, in my opinion, has a social responsibility. He or she can influence or drive the lives of people in a positive way.

What is your secret dream?
Play in some New York club with “Pancake Drawer”. I have never been there, and I would love to have people listen to our music and our songs there.

You can find Veronica on Facebook: and she also has her own Youtube channel.

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This is not a person

Mr. Pablo Ostarek from Spain has OI himself and is a film maker by profession. Now he has a new project, with the topic of overprotection, something many people with OI can relate to.

We have asked him to tell us a little bit about his project and his intentions behind the film Esto no es una persona (This is not a person), which is an investigative piece on the overprotection that people with rare diseases suffer in their close family and social circles.

Can you tell us the story behind the title?

Our title This is not a person alludes to the concept of stripping someone of their humanity by not treating them, or even seeing them, as a human being because of a physical disability. People see the wheelchair, but they don’t think twice about the person using the chair.

Are you aiming at an international audience?

As we are filming in Spain we decided to present our Indiegogo campaign in Spanish, but we quickly decided to make an English translation as well. We do believe that the film has a worldwide appeal, so we will be creating subtitles in as many languages as we can, so it can reach as many people as possible. At the moment we don’t have enough funding to finish the movie, but if you feel strongly about the topic overprotection, we are grateful to receive your support.

Why overprotection?

In This is not a person we are going to tell the story of Elisenda Carballo, a 44 year old woman with OI that has never truly gotten over the overprotection she went through at the hands of her parents. We are not only going to tell her story – as this is an investigative film, we are going to analyse the consequences and reasons behind this “overprotection”. We want to understand in what way it affected Elisenda and the people close to her, as well as why this stigma surrounding rare diseases exists and why it constantly repeats itself.

And why overprotection? It is actually quite simple. I have found that anyone I speak to, that finds themselves in a similar situation as mine, usually agrees:

The hardest thing about having osteogenesis imperfecta (OI) was never the pain of breaking a bone, or the physical discomfort one has to go through during the weeks or months that follow. The worst part has always been the social exclusion. The feeling of not belonging to the rest. One forgets the acute pain of a fracture. We are all built that way; but the other type of pain might last forever.

Below you can find the trailer of the film with English subtitles.

 

 

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My voluntary work in Ghana

I am Stefanie Ritzrow, 19 years old and just graduated from school this year. I have OI type IV and use a wheelchair as, I cannot walk. My biggest passion is traveling and I always wanted to combine that with being a helpful hand and experiencing more than a normal holiday.

In December 2017 the framework of the “weltwärts everyone inclusive!” – a project for inclusive volunteer services -grabbed my attention. So I applied – first without any expectations. Then everything went really fast, I passed two preparational seminars where close friendships got build up and since 26th of September I live in Ho, Ghana, West Africa!

I am working for VOICE GHANA, an NGO managed for and by people with disabilities. Voice Ghana’s focus is to promote access to quality education for children with disabilities. My placement is primarily in Ho Anglican School, Unit for Special Needs Children (mental retardation and psychological disabilities), where I assist the staff during the lessons and sometimes overtake a class about eight pupils for a short period to realize own ideas and projects. This school is a role model and very unique in this area.

Together with my co-volunteer and two other short-term roommates, we are having a good time together and I am really enjoying my stay. Even though there are good and bad moments and sometimes I am full of worries, I always try to focus on how cool it actually is that I am here at all! Of course I also made some risky trips and had some dangerous situations, in the end it was at least fine and I could laugh about what I just set myself to do again!

Unfortunately I am pretty dependent here… I often have to get carried, pushed or assisted. However this is still not a big problem for me, as I have a private taxi driver, an assistance for household and I am never really alone anyway. I also have physiotherapy here, twice a week.

Apart from the volunteering work, my biggest highlights so far, were the Wli Waterfalls in a mountain-like tropical forest, coming from Togo (for a couple of minutes my nerves lost control and I thought I could never make it since I was scared to literally fall down the mountains), a traditional Ewe-Festival in a beautiful forest located 10m below street level without any chance to get down (and up) there with a wheelchair. But I made it! Together with German and local friends we had a really fantastic day and night.

Apart from that, I had my first trotro ride as well, where I can only advise to be careful with OI! Moreover, you should not take a tuctuc bike for long distances if you are with more than five people AND have a non-foldable wheelchair. Haha.

At first, a lot of things were new for me and I probably had a little „culture shock“, but if you really open your eyes and observe, ask questions, be sensitive for potential backgrounds and meanings you might not understand right from the start, you will surely have a great time and take part in a personal and global movement. I always knew that neither my wheelchair nor my OI could discourage me from doing so. Volunteering is not only spending time in a country “far away“ and being a saviour in a protectory or nursing home. It is rather about changing your perspective, exchanging cultural aspects, ways of life, thoughts, opinions, and so much more. Then when you go back to your home country with all your new experiences, you will also bring something back home to share. So what I think is, that the connection that gets build up is full of profit for everyone. Especially people with disabilities should be taken into development cooperation more.

If you are interested or feel encouraged, do not hesitate to email me or send a message on Facebook! I would love to hear some of your experiences or just to share more of mine:

Email: stefanies_mail@web.de
Blog: ritzroads.wordpress.com

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