Search This Blog

Monday, March 30, 2015

How it all started



I was about 15 years old and I spent my days on Youtube watching videos of Ryan Sheckler and skateboarding tutorials. I knew my dream of becoming a skateboarder would never come true: I have Cerebral Palsy. I can barely walk on crutches but I had always wanted to skate. I dragged myself around everyday with the help of my crutches or a walker, then I closed my eyes and imagined my life without a disability and with a board under my feet.

Around that time, I got my first wheelchair. I can't walk for a long distance and whenever we had a lot to walk I was pushed around in a baby buggy. I was 15 years old. I didn't like the fact that I couldn't decide where I wanted to go, but walking was so exhausting that I really needed to sit down every once in a while. One day my physical therapy asked me if I would like to get a wheelchair to replace the baby buggy, since I wasn't a baby anymore. I agreed, so she told my family about it. It was not easy for them, because they saw the wheelchair as something “very disabled” people use, and they didn't see me that way. That is why I didn't use the chair much in the first year. I did not insist on using the chair more often because I thought walking was tiring but still less limiting.

I was trying to learn German, so I started looking for German movies online and I decided to watch one. One of the main characters was a kid on a wheelchair. I always read the names of the actors after watching a movie. One of those names caught my eye: Aaron Fotheringham, wheelchair stuntman. I wondered what a wheelchair stuntman could do, so I googled his name. The first results were YouTube videos, the titles were something like “Wheelchair in a skateboard park”. Needless to say I immediately pressed play. That was the moment that changed the way I see my disability. I couldn't take my eyes off of this kid shredding the park on his chair, with a motocross helmet on his head. At the end of the video, I was so happy I almost cried. It was possible, I could be a skater. Wheelchairs can be cool. In that moment, I knew I needed to talk to that guy. I found a contact form on his website and sent him an email. I told him how his videos opened the door to a whole new world for me, a world where dreams do come true. He replied the next day, and seeing his name in my inbox made me the happiest girl on the planet. There was someone telling me it was ok to have a disability, he was telling me there was nothing wrong with me and that the wheelchair was something to play with, it was not a bad thing. I found out he was not the only one hitting the skatepark on his chair, there was a whole team, a big family. I started dreaming about becoming a member of that family.

A few weeks later, Aaron told me he would be coming to Italy for a TV show. They were filming in Rome, a 6 hour drive from my town. Not close, but not as far as his hometown, Las Vegas. I begged my parents to take me there, I knew I had to meet that kid. It took me a long time and a lot of effort to persuade them, but they eventually agreed to drive me to Rome.
When I met him, I was blown away by what he could do on his chair. Even my parents were pretty impressed. We talked, played and had fun, and when I left Rome I knew everything was going to be ok, my dreams could come true and I could become the person I had always wanted to be. That was only the beginning: I could be independent and happy. My wheelchair was my favorite thing to play with. My disability was a blessing.


Wednesday, March 25, 2015

Cerebral Palsy Awareness Day: Thank you CP!


WARNING: this post is extremely crazy and revolutionary.

Today I want to thank my disability for several reasons.

CP made me who I am, it is a part of me and the challenges I face make me a stronger person. The days in the hospital and the hours of therapy taught me to appreciate the small things in life. Without my disability, learning to put my shoes and braces on by myself wouldn't have been such a big accomplishment. I think that is one of the reasons why I am always so happy.

My disability is the reason why I have met many of my best friends and the awesome people in my life. If I didn't have a disability, I wouldn't have been part of this great big family, and I am so thankful for all the people from the special needs community who love me and support me everyday.
It is also a good filter: the people who don't like me because I am different are not good enough to be part of my awesome life.

Because of Cerebral Palsy, I see the world from a different perspective. I think if we all put our points of view together, we can all learn something from each other.

I can adapt: when something doesn't work for me, I find a different way to make it work. This applies to so many different things that range from brushing my hair to going on a trip with my friends.

I don't care about what people think: I have been picked on because of the way I walk, yelled at because it takes me more time to do some things, made believe I am worth less because of my disability. I don't care. I know what I'm worth, and I know that I can accomplish more than people think.

I love my life, even when it is hard. Without obstacles, I wouldn't be able to fully appreciate it.
I don't want a cure, I am happy with the person I am. I do want awareness. I want people to know what CP is, but I also want them to know that it is not a big deal and that I'm not so different from anyone else.

Tuesday, March 24, 2015

Where are your parents?


"Where are your parents?"
"Who did you come here with?"

I hear these questions a lot. Whenever I go somewhere by myself or with a friend on wheels, someone is concerned for our "safety" and feels the need to ask where my caregiver is.
I know I may look younger than I actually am, but I think this happens because I get around on a wheelchair and a lot of people can't even imagine that a girl on a wheelchair can live a normal life and do stuff on her own.

My trip to the amusement park a few months ago offers a good example:

Lisa and I took her car and went to this amusement park. Because we both use wheelchairs, we could get free tickets. I went to the ticket office and asked for two tickets for chair users. Guess what I got? A wheelchair ticket and a caregiver ticket. Why? It seems like we can't go anywhere without some kind of assistance.
When we got in, we wanted to get on one of the rides and we were told we could not ride together because each of us needed to have a "caregiver" by her side. We just asked someone who was standing in line if they wanted to ride with us. Now tell me what the difference is? We did not need any help and I don't understand why I can't sit with my friend. Why is it better that I sit with a stranger who can walk? We don't need our legs on that ride and if it gets stuck in the air no one else will be able to walk away.
Later, I wanted to try another ride. Lisa didn't like it so she waited for me outside. My conversation with the park employee went pretty much like this:

Me: Hi, can I get on this ride?
Him: Who are you with?
Me: No one.
Him: What?
Me: I am an adult and I am on my own.
Him: Who did you come here with?
Me: My friend, she is also on a wheelchair.
Him: Where are your parents?
Me: At home, in Italy. (we were in Germany)
Him: So how did you get here?
Me: With the car. (I was starting to lose my patience with the guy)
Him: How could you come in a car on your own? You can't drive.
Me: (at this point I was mad and starting to raise my voice) Yes we can! You know, hand controls? Now can I get on this ride???
Him: Yes.

I am sick of people assuming we can not be independent just because we can't walk.
I want to be treated like an adult and I want to be respected.
If I can't walk it doesn't mean I can't enjoy a day at the amusement park with my friend just like anyone else. With or without chair, we are adults and we can do stuff on our own.



Saturday, March 21, 2015

World Down Syndrome Day!


Today is World Down Syndrome Day! This post is dedicated to my friends with Down Syndrome.

A lot of people think having a kid with Down Syndrome is a tragedy, but I know that is not true.
I am not an expert, and I know having a kid with a disability (of any kind) can be hard sometimes, but I also know that it is definitely worth it!
I have met quite a few people with Down Syndrome, and they were all extremely joyful and kind. I wish people understood that they sometimes see the world in a different way, but they are not so different from others, because in the end we are all different. I think we should be thankful for this diversity, because it makes us all richer!
My wish for all the people with DS is that society understands their value and abilities and enables them to live a full and normal life and that this prejudice towards them stops.

To my friends with Down Syndrome: you are awesome!

Thursday, March 19, 2015

The power of a smile


This morning I woke up and started translating a text for tomorrow, then I ate lunch and started getting ready to leave. I had to attend a meeting at my physical therapy centre, so I reharsed a few sentences in my mind and got into the "Fight for your right and you will get what you want" disability advocate mode and I got in the car. Little did I know that I would be feeling so happy afterwards.
When I got there, my friend was waiting for me, ready to fight. I sat there and listened to the doctor. Then I said what I had to say and probably got what I wanted.
At some point, I looked at all the special needs moms sitting behind me and I spotted her, my favorite kid's mom. She saw me and walked up to me, she was happy to see me and said she'd go get her little girl. I hadn't seen them in about six months. I met them before I left for Germany, but not afterwards.
A few minutes later, my girl rolled into the room on her purple wheelchair. When she saw me, her smile lit up the whole room. We were so happy to finally meet again. She held my hand as I caressed her neck and played with her hair. She'd occasionally squeal with joy. Everyone was looking at us, the doctor was still speaking. We didn't care.
She showed me how she learned to use her left hand to push her chair a little bit, and she told me she is getting a new chair. We talked about our favorite TV show. She made me happy. Whenever I am around that adorable 6-year-old, I smile. She has the power to brighten my day.
When she struggles to open her right hand to caress mine, I think that's what love is about.
I love her from the bottom of my heart, and she loves me back.

Thank you for making my day, I love you baby.

Wednesday, March 18, 2015

CP awareness month: What is Cerebral Palsy?

March is CP awareness month, so here is an infographic about Cerebral Palsy:


I have Cerebral Palsy, and I don't see it as a big deal, it's a part of me, it makes me who I am and it can even be fun sometimes! I will tell you more about my relationship with CP in a different post, but for now enjoy Jack Carroll's "stand-up" comedy!


                                         


Monday, March 16, 2015

What?! Railway station edition


Tonight I'm gonna tell you about a couple pretty weird and somewhat disturbing things that have been said to me, mainly because I use a wheelchair to get around.

"Do you need help?" 
"No, thanks, I'm fine"
"But I can't leave you here alone, you are so defenseless!" 
"You must, I am an adult and I don't need any help!" 
"It is cold, do you want to come to my place?"
"NO! Now go away and leave me alone"

This was pretty much the conversation I had with a man I had never met before. I was at a railway station in Germany, waiting for my friend to come pick me up. It was one of my first weeks in Bochum, so I was not very confident with my German and I had never been there before. As soon as that man approached me, I was kinda scared because there were not so many people around. When he said "You are so defenseless", he made me mad.
Why can't I just take a train and wait for my friends like anyone else?
Why do I have to be defenseless just because I am sitting on a wheelchair?
Why do you assume I can't take care of myself?
Why do you insist on doing something for me when I already told you I do not need help?
Why do you invite me to your place? That's creepy!

Another similar conversation I had with a man I didn't know at another station was:

"Do you need help?"
"No, thanks."
"Are you sure?"
"Yes!"
"Do you wanna come to my house?"
"NO!"
"Okay..."

This conversation didn't make me as mad as the first one, it was just very creepy. It somehow made me laugh, especially when I told my friends about it.

I wish people understood that, even if I use a wheelchair, it doesn't mean I can't take care of myself and go about my business just like any other adult. I hate being treated like a child.

Saturday, March 14, 2015

Bochum part 2


                                             video

When the plane landed in Düsseldorf, I was so happy to be back and couldn't wait for my next adventure: the trip to Leer, where Lisa's parents live (the word "leer" means "empty in German, so I kept calling the town "empty").
That morning I met up with Lisa and we went to Düsseldorf, where we took the train with David, his skate chair and our friend Anna. At that time I had to study for my first exam, which consisted in performing a short play in German. In order to pratice, I needed someone to play the part of my husband Horst, so I brought all the papers with me and asked David to read his part...then he started making fun of my accent and we all started laughing (but, a few days later, I passed the exam with a very good grade!).
When we got there, Lisa's dad picked us up and managed to put all four chairs in the car. We went home and grabbed some food, then we went to my first punk rock concert and we rocked the night away.
The next day I woke up and enjoyed a real German breakfast (they eat more than just sweet stuff!), Lisa's mom even spoke Italian to ask me how I wanted my hot chocolate! Then it was time to visit the biggest indoor skatepark in Germany. It was a fun day and I practiced for the drop in (my skating goal of the semester). When we got home, dinner was ready! It was so nice to finally be able to eat some real food instead of Döner ;) and it tasted really good (thanks Simone!).
Sunday was our last day in Leer, and Anna and I even managed to get a massage before we left. It was an awesome trip =)

A few days later, my friend Philipp came to visit me and we all went to dinner at Lisa's place (she made real pesto!). She and her mom listened to my rants for a while, then we went back home and we almost missed the last train. I had a lot of fun skating with Philipp on Saturday, and he left some blood and his train ticket at the park. It was snowing the next day, so we played in the snow for a while and I really enjoyed rolling around in his Box chair. Somehow, we managed to get to the skatepark in the afternoon, had some more fun and got his ticket back. Then he took his train and went home.

On the following week I studied a lot with Lisa, and waited for my parents and my best friend Tina to come visit me. I had some fun showing Tina some of my favorite places covered in snow and teaching her something about German culture.

February was the hardest month, I had to study hard for my exams and I knew I didn't have much time left in Bochum. I passed all my exams and survived broken dryers and bad weather.
Ina started following me around and filming my awesome life, it was fun (she is almost as crazy as me)! I even took her to the skatepark and taught her a couple tricks, she learned pretty quickly!

My last big adventure with Lisa and David was the WCMX workshop in Wiesbaden. Anna and I woke up early in the morning in order to get there on time. The skatepark was full of journalists and cameras (I even ended up on TV!). I spent the day skating on Lisa's new chair, chasing a little kid in the park and trying to teach a journalist some wheelchair skills. On that night I went to Megan's birthday party with my friends.

It was my last week in Bochum, so my dad came to help me pack my countless bags. I was so unhappy, I really didn't want to leave.
I still had a goal to fulfill, so I went to the skatepark one last time. My lovely neighbour Vici and her assistant came to see me skate. David brought his old skate chair and encouraged me to try to drop in. I was not very confident because it was pretty high and I had never done that before, but David reminded me that I crash so often I shouldn't even be afraid, it wasn't gonna be any worse. So I tried, and I crashed. But I loved the feeling, so I tried again and I made it! I was so happy, it was an amazing feeling =D
The rest of the week was so hard for me, I had to say way too many goodbyes. I didn't want to leave the place where I learned so much, and all the awesome people who made me so happy during this semester.

This city will always be a part of me, it has seen me grow and become the person I have always wanted to be. Bochum gave me wings. And I will use them to go back soon.



Friday, March 13, 2015

Bochum part 1




Tonight I'm gonna tell you about the best 6 months of my wonderful life.

As some of you may know, I study Translation. My study programme for this year included an Erasmus semester in Germany.

At first I was pretty insecure about spending 6 months in Germany without my family and my friends. I had never been away from my country for such a long period of time, and I had never lived alone before. The fact that I have a disability made me wonder if I would be able to do everything on my own in a foreign country. Deep inside I knew the answer was yes, and I wanted to show everyone what I can do. This was my chance to prove to my family and myself that I am an adult, and I am able to do so much more than I thought.
It was time to choose the university for my Erasmus semester.
 Because of my disability, I had to make sure that both the university and my accomodation are accessible, so that I didn't need an assistant.
Because of my passion for WCMX, I wanted to be as close as possible to Dortmund, where my friends David and Lisa live.
Bochum happened to be the perfect choice.
I fell in love with the university as soon as I got there. The campus is so big and full of nice people, and it is completely accessible! I was in heaven.
My students' house is 5 minutes away from the campus, and it is surrounded by supermarkets, doctors' offices, bars, bookshops and anything I needed. I finally had my own house keys, I felt free.
Lisa came to help me get all the documents I needed to start my physical therapy in Germany (thanks <3) and I was ready to start my new life there.

A few days later, David invited me to join a wheelchair training in Dortmund. On that day I rolled into the 4ma3ma (the place where David works) and I met some of the wonderful people who work there for the first time, and it felt like home. =)  I felt like it was a place where I could me myself, as "spasti", as clumsy, as crazy as I wanted and no one would judge me. I had so much fun and learned so much I will never be able to thank them enough. I used the escalator on my chair and went to the skatepark for the first time. I had a blast.

My next big adventure was the Rehacare, one of the biggest expos about disability related products. I was so excited about meeting Aaron and Mike again (I will tell you more about them in another post), Aaron was the first one to help me accept my disability and undestand that a wheelchair can be a toy, and I couldn't wait to spend some time with him again. A few of my Italian friends had come to Germany for the expo, and it was nice to speak Italian again. =)

I started going to university and I met a few exchange students, my Erasmus friends, the best neighbour in the world (I <3 u Vici) and a couple german girls I love, we went to a lot of parties and trips. My favorite trip was our trip to Berlin, when me and my friend got into the Reichstag without having booked a tour (I love my wheelchair!) and skipped dinner to visit it.

I went to an amusement park with Lisa and I went down a hill at full speed, a child got in the way and I tipped over so that I wouldn't run him over (I wish I had a GoPro on my head!).

My next adventure with David and Lisa was the trip to Hamburg, where I met Mutti (<3) and went to my first soccer game (St Pauli!). My favorite part of the trip was the skatepark, it was one of my first times skating and I crashed so many times, but then I made it work and I felt awesome! David pushed into the bowl (thanks!) and it was an awesome feeling.

I went to see the Gaslight Anthem with my friend Megan and we both got shoutouts!
My life was awesome, I went to therapy, to university, to the skatepark and to many parties, I had a lot of fun and I started getting more confident with my German.

I got a new wheelchair and finally mastered the wheelie, then I turned 21 and went to the skatepark to celebrate.
I taught David and Lisa to make real pesto and ate Lisamisu with peanut butter. I got addicted to Spezi and warm brezels at the railway station.
I met my tandem partner, a German girl who is learning Italian, and we only spoke German because she was not confident enough to speak Italian, but we got along very well. =P

At that point it was time to fly back to Italy for Christmas, and I did not want to leave...but I went to Italy, ate too much and opened my presents. I celebrated the New Year and I was ready to go back to Bochum. =)

Part 2 here


Tuesday, March 10, 2015

Unlucky song


Tonight's post is about a serious matter.
A few weeks ago I came across this song on Youtube and, as I listened to it, it made me really upset.
Let me tell you why:
This song is about Aden, a child with Cerebral Palsy, he is referred to as "unlucky". How does his disability make him unlucky? You can't assume this kid is unlucky just because there are some things he can't do. This is the title of the song, the main focus of the whole song is to show how "miserable" his life is.

Here are some of the most insulting and judgemental lyrics in my opinion;

"Can I ask you why you love me?" "Thank you for giving so much love to me" A kid - with or without a disability - should NEVER have to ask his parents why they love him. That's just what parents do, they love their children. This is normal, they are not doing him a favor by loving him. The fact that he has a disability does not mean he shouldn't be loved as much as any other kid.

"I'll never speak to you/walk with you..." Why focus on what he can't do instead of what he can do? I am sure he has many abilities and he deserves the world to see how able he is. CP may have taken his ability to walk and talk, but it has blessed him with a beautiful smile and made him able to appreciate the little things in life, why does no one see this part of him?

"...someday they will look at me and say we've come to set you free" Free from what? From the wheelchair? From his "miserable" life? A kid can be free on a chair, his wheels are his freedom, and he can have a life just as happy as anyone else. The only problem here is the way the society sees him, as unlucky and unable to live a fulfilling life. Society makes him unlucky, not cerebral palsy.

"but until that day, all that you can do is look at my eyes and see my dreams" What about interacting with him, playing with him and trying to see the kid and not just his disability?

I find this song disgusting because a kid with a disability is seen as a burden, as a worthless human being, but it is a wrong message! No song should carry such an insulting message, it's already hard enough for disabled kids to understand how awesome they are, they don't need society to let them down. I know this probably wasn't the singer's intention, but this is the message we get from this song, and it is very wrong and dangerous.
The society's perception of people with disabilities needs to be changed as soon as possible.

Welcome!


Hi everyone, welcome to my new blog!
I guess I should tell you something about myself before I start sharing my thoughts with you:
I am 21 and I live in Italy, where I am now doing my Bachelor in Translation. I study English and German and I can speak a little bit of French (and, of course, Italian!).
I am totally crazy and I hate limits, so I always try to push beyond them.
I was born with Cerebral Palsy, so I use a wheelchair (and I love it!) or crutches (I DON'T love it!) =P
I hope you'll enjoy my posts, please let me know what you think about my blog!