To my angry "teammate"

You often yell at me for leaving adaptive equipment set up at the gym. You know me, so you know it’s hard, and in some cases, impossible for me to put it away on my own and I have to ask someone to help.

I know you and have never viewed you as a mean person. When you get mad at me, I try not to take it personally. Maybe you just had a bad day. Everyone has bad days.

But I don’t think you’re right. I don’t think you can blame me for leaving the equipment around. It’s not my equipment. It belongs to the gym and it’s where it should be. I don’t complain when I come in and find your bench in place, so why do you have to complain if you find mine?

I know most people on our powerlifting team use the regular bench, but I also know I find it there way more often than you find mine. And I know I can’t move it on my own, but you can.

Today, I saw you walking into the gym as I was parking my car. I knew you’d find the adaptive bench. I just hoped you wouldn’t get mad because I was already exhausted and I had come to the gym to free my mind for a while.

I got in and heard you walk up the stairs. You saw the adaptive bench and got angry. I don’t know who you were talking to, but I heard you when you called me the R-word. I don’t know if you knew I could hear you, but you hurt me.

When you walked down the stairs, you yelled at me and told me I must always ask someone to move the bench when I’m done. I didn’t reply because I wasn’t in the mood to apologize and didn’t want to hurt you. I try to always be nice to people because I don’t know what they’re going through.

This isn’t the first time, and it probably won’t be the last, but I want you to know you hurt a lot people by calling me the R-word. It’s not just about me, it’s about the entire special needs community. I don’t get called the R-word very often because my cerebral palsy only affects my movement, but there are people with special needs who might be called that every single day, and it’s so wrong. I know you probably were just mad and didn’t really pay attention to what you were saying.

A friend of mine once told me if someone gets mad at me because of my special needs, I don’t have to worry about because it only determines the other person’s worth and not mine. But I’m not judging you because I know you, and I know you’re better than that. What makes me a little sad is the fact you know me. I thought you were my teammate and my friend. I used to look up to you, and I didn’t expect you to act like this because I have always been nice to you.

I’m not going to apologize for having special needs and needing extra equipment or extra help. I’m not going to apologize for leaving my bench in place. I’m not asking you to apologize for what you said or did. I’m just asking you to try to put yourself in my shoes. And remember, a little kindness never hurt anyone.

Is this support or just another obstacle?

I was watching TV a few days ago and I saw this ad. It is in Italian, so I'll translate the words for you. It says something like:

"When a baby is born with CP, everything stops for that family, every normal life, every future dream...Please send an SMS and donate to support these families..."

You know I have cerebral palsy and this ad made me think about the way disability is represented in the media and the message that comes across.

I wanted more opinions about it, so I asked a few of my CP buddies to watch the video and share their thoughts with me. Here is a short summary of what we have to say:

• Nothing stops for the family! Of course, a child with a disability is something they didn't expect and didn't wish for and it will change their lives but it won't stop anything. Any child changes the life of his family. Things can get harder when the baby has CP but it is not a tragedy!
• A kid with a disability can have a normal life, if society allows him and his family to enjoy it without having to face judgement and ignorance.
• Families with disabled children do have dreams, just like any other family! They might be just a little bit different from the ones they had before the diagnosis but they don't disappear.
• They keep showing a picture of the little girl where she doesn't smile or do anything, she is smiling in every single one of the other pictures. They clearly want people to pity her. They think that if people feel bad for children with CP they will donate more money.

Here's what they don't think about: what are people going to think about these children and their families? 

They will think that they are unlucky and that their life sucks. They will think that they are worth less than other children, that they are broken and need to be fixed. Society will consider them unable to take care of themselves and become successful adults. They will be considered a burden. People will donate a couple euros and feel good because they helped those "poor children". 

This message does not help families of kids with CP. You know what would help them a lot more than that money? A positive image of disability. An ad to show the world what they are able to do, to show their strength instead of their "weakness". A chance to prove their value. 

They need help eliminating the prejudice: you are just making it stronger. You are making their life harder. Families of children with CP need your understanding more than they need your money. The change they want to see is in your mind, not in your wallet.

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.

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.

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.

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!