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Sunday, November 1, 2015

More than awesome part 2

My trip to Germany was great. I had to wake up at 4am to go to the airport and, when the plane landed in Weeze, it took me more than two hours to get to Dortmund, but it was definitely worth it! On that day I even managed to watch the end of Anna's Bachelor presentation at the skatepark.

I was so happy to be able to spend some time with Lisa and David and go to the Rehacare, the biggest exposition of disability-related products in Europe. I had been to the Expo last year and I had so much fun, but this year was even better: they built a small skatepark with drops, roll-ins and even rails.

The first day of the Expo was the best day of my life: I got to see Mike Box again (I hadn't seen him in a year) and he brought a WCMX chair for me! He made me the happiest girl in the world. I love him so much and he makes me feel so loved when he's there for me. I also love my new chair and I spent the next few days skating with the guys, I even took part in a couple shows. I have learned so much with this chair, it really took my skating and my confidence to the next level. I am so thankful to Mike for giving me this opportunity. In the last few weeks I've been thinking about how many people love and support me and my passion, and I feel so lucky because I know I wouldn't be where I am without them. I have decided I want to make a difference in my country, so I will work as hard as I can to improve my skating. Once I'm good enough, I want to start workshops just like David does, so that kids and adults on chairs can try WCMX in Italy, and hopefully fall in love with it.

During my week in Germany I even managed to go to dinner with my friend Megan. I loved spending some time with her and talking about our crazy lives and my love for my new chair. We went to an Indian restaurant (my first time!) and the food was very spicy, but it tasted good! After dinner I realized if I went home I'd get there at about 2am, so I decided to sleep over at Megan's, even though her apartment is not accessible and I had to climb the stairs (we did have some fun in the process anyway). 

My last day in Dortmund did not start in the best way: I was home alone packing my bags and suddenly there was no power in the whole apartment. When Lisa and David came home, they spent an hour on the phone trying to figure out why. In the end, they had to go to the office, that meant I had to get to the railway station on my own (with two wheelchairs). We said goodbye and I started rolling towards the subway, pushing myself with one hand and the other chair with the other arm, my big backpack on the old chair. It was not easy because there were hills and curbs, which wouldn't be a problem without the extra chair, but can get tricky when you have to push something besides yourself. With the help of a couple people, I managed to take the train. When I got to the railway station, things got easy: I even had fun rolling with my two chairs on the flat ground!

During my train ride to the airport, everyone was looking at me because I was sitting between two wheelchairs; one was weird (the WCMX chair has shocks like a bike and a grind bar, so it looks different) and upside down (it has no brakes, so I sit on the train seat and tip it over to prevent it from rolling away), the other chair had a huge backpack on it. 
The flight back was good and I was able to take both chairs on board without extra costs (and without arguments!). I am now taking my Masters' classes, so I probably won't be blogging much, but stay tuned because I might have rad news coming soon!

Friday, October 23, 2015

More than awesome part 1

This is how I'd describe my life right now: more than awesome. The past few weeks have been crazy, so many great things have happened.

Let's start with the first one: I graduated! I am now a Bachelors (even though I don't really care because my Master's classes started this week so it really doesn't make a difference).
For my project, I had chosen to do the translation and subtitling of my favorite TV series, Push Girls. The professor liked my idea and I managed to get it done in time for October's graduation session. On the week of my dissertation, a good friend of mine came from Florence and she spent a few days at my place so that she could be there on that day. She is pregnant with her first child (a baby girl!) and I loved spending some time with her and getting to feel the baby moving in her belly.
On the day of the dissertation, my best friend came to my house early so that she could do my hair. We wanted to try a pretty complicated hairstyle and it took forever to get it done, but I like how it turned out. I am very lucky to have my own personal hairstylist! 

The dissertation in itself was not bad, but I had to wait for over two hours until it was my turn. When I got in, I started talking and then I wanted to show a clip from the subtitled episode. I had gone to University the week before just to try the video: everything had worked fine. What we didn't know was that the computer was going to be the same, but they moved it to a different room and they forgot to move the speakers, so my video was mute. Somehow I managed to go on and my final grade was the top grade, so everyone was happy. Later that day, I spent some time with a few friends and my family and we celebrated together.

When I sent a picture of my graduation to my friends in Germany, they asked why I have "a tree" on my head. It is a tradition in Italy. When you graduate University you wear that crown instead of gowns and caps. The laurel wreath was common among poets in the past, now it represents culture and graduation.

The true highlight of the month was my week in Germany, but it definitely deserves a post of its own, so stay tuned! I'll be posting about it soon.

Monday, September 21, 2015

Outdoor fest

Hi everyone!

I am finally done writing my Bachelor project, I only have to get my presentation ready, so I can start blogging again. I haven't been doing much since my last post because, as you know, I've had a lot of work to do. But I had so much fun last weekend, and I will tell you about it.

A good friend of mine was going to be in my town the whole weekend to promote a wheelchair version of the Segway and he asked me to join him so that we could have some fun together. It was part of an event, the Outdoor fest, which included, among many other sports, a FMX show. Anyone who knows me knows how much I love action sports, so I was stoked when I heard that I could even get to ride on their bikes.

The first day was pretty fun, I loved spending some time with my friend and using Genny, the wheelchair he was promoting. Unfortunately, the bikes were not there yet.
On Saturday I woke up early and decided to spend the whole day at the event, I didn't want to miss any FMX show and I wanted to ride Genny on the beach.
When I got there, one of the riders started talking to me and I told him that if I was going to ride with him he had to do something cool, because I am used to watching FMX and a little speed won't be enough to satisfy my needs. We started joking around and then he made me ride with him, I had fun even though he didn't do anything out of the ordinary. Unfortunately, it was pretty windy, so they couldn't really do the show as planned. 
I went to lunch with my friend and then we tried the chairs on the beach. It was a great feeling because I could move around in the sand without having to walk (I hate walking!). He said I am a good rider and we were both happy.
I spent most of the afternoon in the FMX area: even though it was still windy and they couldn't do many shows, they were all very nice and fun to be around. One of my favorite things about action sports is that most riders are very kind to each other and in general, sometimes it almost feels like family. 
After dinner the wind was not as strong and they could jump under the fireworks. It was a beautiful show, but at some point it started raining hard, so they had to stop.

On Sunday I spent most of the day with the riders, I watched the shows and got to ride again. I am trying to talk them into letting me try something a bit more extreme, but for now I thank them for what they have done so far.

Monday, August 17, 2015

My week in Germany

As I have mentioned in my previous post, I spent a great week in Germany last month. I was so happy to spend some time with my friends. 

On Friday, Lisa and I went to lunch with another friend of mine. After lunch, we went to David's workplace and his Italian coworker fixed my spoke (thanks!). It had been loose for a couple weeks and I thought I had to replace it, I am so glad he could fix it in a few minutes! 
As soon as David was done with work, we got on the train to go visit Lisa's parents. There was a family party going on and I am so happy I was invited because I always enjoy my time there. It was nice to spend some time with Lisa's mom and meet her grandparents.

On Saturday and Sunday we ate a lot of good food (thanks Simone!) and we visited Lisa's dad. Lisa, David and I went around town and practiced some wheelchair skills: I rolled down some stairs, then there was a curb that we wanted to get on, but I thought it was too high for me to go up. David and Lisa did it and they kept telling me I had to try, so I did. Sometimes they annoy me when they keep saying I should do something that I think is too hard, but then I realise they just do it because they love me and they want me to get better at it and become more independent. When I tried, my wheelie was not high enough and I fell on my elbow, but at least I was on the curb! I was getting up when a couple walked by and wanted to help. It is something I can do on my own, so we all politely declined. At that point, the man insisted and started getting mad at my friends for not letting him help. I think he even insulted them. When the couple finally walked away, we kept rolling. 

Walking people, I think it is fine that you ask me if I need help if you see me struggling, but please do not offer your help whenever you see me around town. If there is anything I need, I will ask. And, most importantly, if I say I don't need help, please do not try to help in any way and don't keep staring. Also, please never touch me or my chair without permission: I know you are trying to help, but I might want to do that on my own or you might actually do something wrong, especially if you are not sure how to help.

On Monday, Lisa and I decided to go to Berlin. We booked two beds in a hostel and we decided to travel by train. The intercity was expensive, so we woke up early to take the first of six regional trains to get to Berlin (Lisa can travel for free and bring another person on regional trains). When we got to the station, we found out our first train had about 30 minutes delay, which meant we would miss all our trains. We explained the situation to the guy at the info point and he was so nice that he made sure we got on the intercity (yay!). Four hours, a puddle of puke and two bottles of Spezi later, we were in Berlin! We left our bags in the hostel and went to eat a currywurst: Berlin believes they invented it, but I think Bochum did, and I find the one in Bochum better (even though that one wasn't bad). Lisa got new gloves and challenged me with a few curbs and a soft ice cream (it melts in a few seconds!). One of the reasons why we went to Berlin was to have dinner at an Italian restaurant. Lisa thinks they make the best pizza in Germany, and as far as I know she is right. The food was very good (my pizza was even better than some I have had here in Italy, just the prosciutto could have been better) and even the waiters were Italian. I just didn't like the fact that we had to roll through the trash to get in. As soon as we got out of the restaurant, it started raining, so we went straight to the hostel. 

On Tuesday, we got our bags and checked out. Before lunch, we went for a roll in the park. I was very tired and Lisa always wanted me to go faster, so I was not in my best mood, until this happened.
We were on one side of the park, and there were two paths to get to the other side: one of them was long and even, the other one was shorter but very steep, and it had a few lines of cobblestones. I took the steep one, and I am so glad I did. As I was working my way up the hill, my bag and jacket fell off of my lap, and I had to stop to pick them up. If you have ever used a wheelchair, you know it gets a lot harder when you have to go up a steep hill with no run-up. There was a guy standing there, and he asked me if I needed help. I could have used some help, but I took that as a challenge, I had chosen the hard path for a reason and I wanted to prove to myself that I could do it. As I was trying to go up that hill, the guy started discussing with Lisa. She told him I am an adult and I can make my own decisions, and he replied that I don't look like one or something like that. He said I could fall, as if adults didn't fall. If I fall, I will get back up. Lisa told me to try it backwards, and it worked. When I finally got up the hill, I was happy. She told me she was proud: that was a reminder that she only acts like that because she cares, and that I should believe in myself and try new stuff everyday, because if I don't try I won't learn. I think that was the most important moment of the week.
After that, we had lunch and we went back to the railway station to catch the first of six trains. I was a bit worried because we only had five minutes to change two of the trains. We climbed on and off the trains as fast as we could, got to the elevators and people were yelling "Keep calm!": we didn't have time to keep calm, but we managed to get to all of our trains in time. About seven hours later, we were in Dortmund. We had dinner with David (he made pesto!) and went to sleep.

Wednesday was my last day in Germany. Lisa brought me to David's workplace to say goodbye, then we went to my University in Bochum, were we had lunch with two of my friends. After lunch I had to get my bags and say goodbye to Lisa. I took the train with one of the girls and got to the airport. 

I hate leaving Germany. In Italy, people often ask me about the Germans. We have this stereotype that Germans are cold, detached people. I don't think it is true. It could be that I have been extremely lucky, but almost every German I have met was very kind. When I am in Germany, I am surrounded by people that make me feel at home. 

When the plane landed in Milan, it had at least 20 minutes delay. I got off the plane and everyone around me was speaking Italian.
When I lived in Germany, Italian was the language of my thoughts, Skype calls and a few italian friends. That instantly came back when I got to the airport in Düsseldorf and I could feel my brain "changing the setting" as I got off the plane in Milan. Coming back to Italy in March, after six months in Germany, it took me at least a couple weeks to get used to the fact that everyone around me was speaking Italian.
My parents and a friend of mine were waiting for me in Milan and, after spending some time with him, I was ready to go back "home" and plan my next trip.

Monday, August 3, 2015

Update on feelings and travel

Hey! I am sorry I have been neglecting this blog for a while, but now I am done with all my exams and ready for an update.

As you know, I went to my friends' wedding last month. It was amazing. I was so happy for them, and it really made me feel like I am growing up. This was the first time I went to a went to a wedding of a friend of mine that was not a family friend or a relative. We had so much fun, ate tons of food, danced and laughed. In case anyone is wondering, I did wear a dress.
Those who know me will know I never wear dresses, but before my friends decided to get married I had told them I'd wear a dress on that day, and that I would buy it with the bride. 
A few weeks before the wedding, my friend and I went on a mission to find the perfect dress for me. After checking about three shops, we found a green dress that we both liked and I bought the first dress of my life. It felt weird to be wearing a dress because I never do, but then I got used to it and many people liked it. I've had a few people compliment my shoes (green Chucks) as well, even though some people had told me I shouldn't wear them at a wedding (I didn't care).

A couple weeks ago I passed my last exam (yay!) and packed my bag. I couldn't wait to go back to Germany, the place I call home (you know, home is where the heart is).
I woke up at 4am and left for Milan, where the airport is. We drove for about two hours and when I got there I checked in, had my chair tagged and the assistance guy started questioning my ability to walk up the stairs. After a quick discussion, I told them to do whatever they wanted, they could carry me up the stairs with their chair (which would require two more people and about 30 more minutes) or let me walk. They let me walk.
When I said goodbye to my dad, they couldn't believe I was traveling alone. This happens every single time, and I wonder why they think it's so weird that a wheelchair user wants to fly alone. However, I'm not going to get into this now, because I have other things to write about.
While I was waiting to board the plane, the assistance guy asked me why I had my helmet with me. I told him about WCMX and he asked to watch a video because he couldn't believe me. I showed him a video and he was impressed.

I boarded the plane and I was very happy when I started recognizing the landscape around the airport in Germany. I had a huge smile on my face when I rolled through the doors to find Lisa waiting for me. She was holding a paper with my surname on it, then she flipped it over and I could read "Welcome home". We hugged and got ready to take the train home. She had brought cool Spezi (my favorite german drink, it's cola mixed with orange soda), because she knows we don't have it in Italy and I missed it so much. This girl knows how to make me happy.
When we got to the railway station in Dortmund, I really felt like I was home. I know that place so well: I would travel to Dortmund almost everyday during my semester in Bochum. We rolled to the 4ma to give a hug to David and the guys and I was so happy to see everyone again. Then, we took the car and went to Bochum, so that I could see my university and my room again. I said hello to a friend there and chatted with Vici for a while. That evening we had pesto for dinner and went to sleep, I was exhausted.

On Thursday, the weather was pretty bad, so we decided to sleep in. I got my brother a birthday present, then we went out to get lunch and we watched a movie on the couch with ice cream (I know, we are lazy). I had to pack my bag for the following day: we were going to spend the weekend at Lisa's parents' house, which I will tell you about in my next post. Stay tuned!

Posing with the groom on his special day

Thursday, June 25, 2015

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.

Tuesday, June 23, 2015

Update on planes, books and gowns


I haven't been posting for about a month because I was really busy studying for 4 of my exams. I have 3 more coming up in July, so I probably won't be writing much, but I have some news for you:

I am going to Germany at the end of July.

I finally booked my flights and I will be spending a week with my friends in Dortmund. I really feel like I need to spend some time with them. I can't wait to go skating, I miss WCMX because there is not much I can do here with my chair and I am not learning anything new. We are going to visit Lisa's parents in Leer, which means good food, good people and good times!
Now I just need to focus on passing all my tests, then I will think about how to fit all my stuff into my backpack.

Another day I am looking forward to is next Saturday: one of my best friends is getting married and I'm sure we will have so much fun! It will be the first time I go to a friend's wedding and maybe the first time I will be wearing a dress (if you know me, you know I never wear dresses), except for New Year's.

I will try to keep you updated so stay tuned!

Thursday, May 28, 2015

Update on zombies, trains and books

Hi everyone, I am sorry I haven't been posting much lately. I am very busy with University: my exams have started and I will have to study day in and day out until the end of July. I will try to post as much as I can, but you will have to be patient.

Here is a quick update on what I have been up to in the past few weeks:

ZOMBIELAND: I volunteer for the Red Cross and we organised a zombie-themed weekend. We played games with and taught basic first aid skills to people stopping by. We told the kids about the importance of a healthy diet and we all had so much fun. I turned into a zombie and scared a few kids ("Look, a zombie on a wheelchair!!!!").

Two of our professors are interpreters, they were working at the International Book Fair in Turin. A few of my friends were going and I decided to join them. We thought it would be interesting to see them at work.
That means I had to take the train, which can be a pretty long process when you live in Italy and use a wheelchair. Here is what I had to do once we had picked our trains:

1. Check on the website to make sure both trains were accessible (many of our trains are not!). I was lucky, they were both ok!

2. Email the office to tell them I wanted to take those trains and I needed a ramp because I was on a wheelchair. You have to contact them at least two days in advance (no, you can't just decide to take the train without booking, unless you are willing to walk and carry your chair up and down the stairs).

3. Wait for them to let me know if assistance was available. It was!

4. Get one of my friends' documents so that we could get a cheaper ticket (she was my caregiver xD).

5. Go to the ticket office with our documents and my card and buy the tickets.

6. Go to Genova (it takes about 40 minutes by car) because the railway station in my town is not accessible.

7. Show up at least half an hour before scheduled departure time (note: in Italy, trains are always delayed by at least 15 minutes)

8. Follow the assistance guys on the service elevator and through the basement, which is full of cables and other stuff (passengers aren't supposed to visit that part of the station, but there is no other way to get to the platform on a wheelchair).

9. Wait for the train

10. Get on the ramp and wait for them to connect it to the train so that I could finally take the train with my friends.

When we got there, our professors were already interpreting. It was nice to see them at work and think that maybe someday that will be our job. 

FIRST EXAM: Yesterday I passed the first exam of the semester! I have 4 more coming up in June.

I think that's all, I hope I can find the time to write new posts soon: I have a few topics waiting. ;)

Thursday, May 14, 2015

My essay about inclusion

I had to write this essay for my English writing class and I decided to share it with you before I hand it in. As you know, English is not my native language, please excuse any mistakes. Feel free to contact me with any kind of advice! A big thank you to Philip for giving me a couple ideas.

April 2 is World Autism Awareness Day, which highlights the frequent exclusion of autistic people from school and work opportunities. To what extent do you agree or disagree with integrating disabled people into our everyday life?

Many people think people with disabilities should be separated because they are a “burden” to society. Every single person, with or without a disability, is unique, but that doesn't mean someone should be discriminated against because he doesn't fit in society's idea of normal. It is very important to include every person in everyday life and everyone can contribute to society if they are given the chance to. For example, autistic people are often considered “stupid” or “worthless” because of their unusual behavior, but this is just a prejudice caused by ignorance.

Autistic brains work differently from neurotypical brains. Because of the way their brains work, autistic people may need to move their body or avoid eye contact to be able to think and avoid sensory overload, but that doesn't mean they are mentally challenged. Many autistic people can't talk or communicate in a reliable way, so they are often put in special education. Teachers think they can't learn just because they can't demonstrate understanding in a “standard” way. This is not a solution. Society needs to give these kids accommodations to be heard and teach them in a way that they feel accepted and valued. Just because they can't speak, it doesn't mean they can't think or feel just like anyone else. There are methods such as RPM (Rapid Prompting Method) that allow non-verbal kids to communicate through typing, which allows them to be considered smart and reach their full potential. Such methods could allow inclusion of autistic kids in mainstream schools.
The problem of inclusion does not only apply to autistic people but to people with disabilities in general. The main obstacle to inclusion is society's perception of disability. Disabled people are seen as unable to achieve, they are considered a burden instead of a resource. This mindset leads to one of the biggest problems that we have to overcome in order to achieve full inclusion, that is pity. Pity is an obstacle to inclusion because able-bodied see disabled people as an opportunity to be nice and they feel good because they helped the unlucky ones. People who care about and love someone with special needs are often considered heroes, in the same way as people on wheelchairs, for example, are considered heroes just for getting out of bed and remembering their names.
This is a very dangerous way of thinking because it implies someone doesn't deserve to be loved and accepted as much as anyone else just because of their disability and that disabled people are expected to spend their lives at home doing nothing, so it is surprising to see people on wheelchairs living a normal life.

Many people with disabilities, especially if they are mentally challenged, are given jobs “just to give them something to do”. In many cases, people with special needs work very hard and are often underpaid. The people hiring them take advantage of the fact that in some cases they can't advocate for themselves and they don't have a strong support system to “exploit” them.

In many countries, the school system doesn't do much to include kids with special needs in mainstream education. Let's try to figure out what the obstacles are and what we could do to remove them: different kinds of disabilities mean different kinds of obstacles.
Kids with developmental disorders may find it hard to attend a mainstream school because of their lack of social interaction (as in the case of autism), but they could be gradually included if the school makes an effort to help them overcome their challenges, for example by testing them in a way that they can demonstrate understanding, which may not be the typical way. Some kids, for example those with Down Syndrome, have intellectual disabilities that may prevent them from keeping up with the other kids' schoolwork, these kids will have different tasks if necessary, but that doesn't mean they shouldn't be able to do their best and be around their non-disabled peers.
Kids with physical disabilities may have trouble attending school because of physical obstacles, such as stairs or lack of equipment (computers, special desks and so on). These problems are really easy to solve and public schools should make an effort to make the school buildings accessible to kids of all abilities. Inclusion does not only benefit kids with special needs, it also teaches other kids respect for all people and increases their understanding and acceptance of diversity.

People are only disabled when the environment around them doesn't enable them to reach their full potential. By eliminating the obstacles to inclusion, we turn the disability into a distinctive feature, which is not something bad, it is just part of a person and it has to be embraced. If we make an effort to fully include people with special needs in society we will learn to see the world from a different perspective and free our mind from prejudice. Inclusion is something we could all benefit from.

Sunday, May 3, 2015

WCMX World Championship: Guest post by David!

Here is a guest post from my friend David from Germany. He flew to the US to take part in the competition and did very well! In this blog post, he tells us about his experience with Team Germany (my friends Lisa, Philipp and Anna are with him together with a couple other guys). If you understand German, you can follow their adventures on "The wheel rocking world of Lisa and David". Thanks David for sharing your post with me!

Team Germany
Ph. Anna Spindelndreier

The World Championship in Dallas is over and it was such a great weekend. I really can't thank the organizers from Rise Adaptive sports enough. After winning an international contest last year in Venice Beach, I was already being called a world champion. But in fact this was the first official world championship: a hard-earned name, with 18 riders from 8 countries.

On Saturday, during the qualifiers, I was very nervous, but apparently my run was very satisfying not only for me, but also for the jury, that rewarded it with the 2nd place. The first 12 qualified for the final: alongside me there were Aaron Fotheringham, Blake Simpson, Katherine Beattie, Rico Reyes, Toni Quinoero Martin, Jake Harvey, Shaun Doss, Quinn Waitley, Pedro Henrique, Christiaan Bailey and Philipp Cierpka.

We have made a little edit of the runs of team Germany (Lisa, Philipp, Paul and I):

The kids of Team Box with Aaron Wheelz

On Sunday it was make-or-break. The scores from the qualifiers were invalid, only the two runs from Sunday determined the final ranking. Still, I was clearly not as nervous as I was on Saturday. It was different for Philipp. He was very nervous and worried he could break his wheel, which he had bent on Saturday, during his good qualification run. Even in his final runs, his excitement was noticeable, but he handled it very well and can now consider himself one of the 12 best WCMX riders in the world.

Though for Paul and Lisa the competition was over after the qualifiers, Lisa barely missed the finals with a 13th place and Paul, after a long mandatory break and with an unfamiliar wheelchair (he got my old TNS with last-minute emergency adjustments) has done well and gained the 15th place.

David can fly.
Ph. Anna Spindelndreier

So it was Philipp and I in the finals. Philipp was the first one to ride on Sunday, unfortunately he was so nervous he crashed several times: nothing bad, but points are taken away after each fall.
Besides crashes, creativity, style, use of skatepark (that is if you are using everything or just rolling in circles), tricks and lines or combos (the way you connect the different tricks and gaps in the skatepark) are evaluated. Once again, I decided to use my safe repertoire and preferably try not to fall and to make my tricks look as easy as possible, which I did. I was very happy with my runs and I managed to use everything, without crashing in the valid runs and with everything I could do at Alliance skatepark. Without crashing? Well, not really: during the very last trick of the very last run, I still managed to lay on the ground. I have tried to come down the handrail with a 50-50 and fell on my back. Anyway, I only did that because the first run was perfect and I thought: “If I make it, then it's good, but it's not a problem if I don't.” Only the best run was valid.

Aaron's handi-plant
Aaron crashed a few times, but compensated for them with his powerful tricks and managed to take home the title. Blake Simpson, the one I was betting on, who also was 1st in the qualifiers, unfortunately didn't have luck on Sunday and placed 6th . The 2nd place, that went to Pedro Henrique from Brasil, was not surprising but well deserved. Until then, I only knew his breathtaking backflips out of the quarter, which he also showed his ability at during the weekend. He landed all of them except one, putting pressure on everyone. Even Aaron wasn't able to land backflips at such rate. However, in such a contest, a single backflip is not enough to obtain a good place. Pedro proved that he can do other things besides using the jumpramp. His grinds, together with his fakie firecracker down the stairs, were crucial for the ranking.

I followed in the 3rd place: thereby the jury rewarded my clean runs and my use of the entire skatepark, as well as the fact that I always used each and every second of my 2 minutes. 
A video of Philipp's run, as well as mine, will follow; here are the general highlights: 

With 750 $ prize money and a bunch of new impressions and friends, the adventure continues. Because, as I am writing this text, I am already in Austin, very comfy at the breakfast table. What we experience here, you will find out soon. 

Greetings from Austin, Texas from Lisa, Anna and David

The winners: 1. Aaron Fotheringham 2. Pedro Henrique 3. David Lebuser 4. Rico Reyes 5. Jake Harvey
Ph. Anna Spindelndreier

Saturday, April 25, 2015


Zac, Mike and I in 2010
As I am sitting here writing my essay for my English class, I can't help but think about my friends from the WCMX family. The WCMX World Championship is taking place this weekend in Dallas, Texas.
I am so happy for them because they get to spend some time all together and have fun shredding. A few days ago, when my WCMX friends from Germany left for Dallas I was so excited for them I even followed their plane on a website called flightradar24. I had a big smile on my face when the plane hit the ground. They were there, ready live their dream, that is my dream as well, and I felt like a little piece of me was there with them. I know they are having so much fun and I can't wait to see all the pictures and videos.
At the same time, I am very sad I have to be sitting at my computer getting schoolwork done while almost everyone from the WCMX family is having a blast in Texas. I can't wait to be done with my Bachelors this fall because I know I will most likely be able to travel to the US in summer 2016 and spend some time with the WCMX family before I start focusing on my Master's.

Now let me tell you what WCMX is and what it means to me:

Can you tell I love Philipp's Box chair?
WCMX is an awesome sport, it's similar to skateboarding or BMX, but instead of using boards or bikes we ride on our wheelchairs. The pioneer of this sport is Aaron Fotheringham, but we call him Wheelz. I have told you about the time I first met him here.
To me, WCMX means hope, it means happiness, love and fun. WCMX means dreams do come true. 
I love the WCMX family so much. As you know Aaron was the first one to make me feel good about my chair. After him, I have met other members of this awesome community: Linda and Zac, who is like a little brother to me; Mike Box, an awesome man who puts his heart and soul into building the best chairs for athletes to shred with and most importantly wants to make people happy; David and Lisa, the best friends and WCMX trainers I could ever ask for, who can always make me feel loved and accepted, even when I fall out of a train because I suck at wheelies; Philipp, who is so patient with me and lets me ride his WCMX chair just because it makes me very happy =P
I love this sport because it is full of love and fun, and we can all have fun together, no matter who we are or where we come from. Sometimes there are misunderstandings and different ideas, but I think we should all stick together and focus on our passion, on what we all love to do. It doesn't matter how you call the sport or who made the chair you ride on, the only thing that really matters is that we can shred together and learn from each other. What is important is that we can show the kids that they can have fun on their chairs and that their disability doesn't have to be a curse, it can be a blessing.
Many people don't understand my love for skating and WCMX, because they think it's stupid and dangerous, but I don't care. It is a passion I have always had and it won't go away. I am proud of it and I think the greatest risk in life is not taking any risk. Even though I am not a very good athlete, I love WCMX and I always will. No matter how many times I'll fall, I will try again.

Philipp, Wheelz and I

Saturday, April 18, 2015

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.

Sunday, April 12, 2015

How "special" are their needs?

In this TEDx Talk, "inclusion expert" Torrie Dunlap speaks about society's perception of kids with special needs. These are pretty basic ideas, and I don't think we should have to have an expert talk about these simple things. Unfortunately, many people, especially outside the special needs community, still consider these ideas innovative or "revolutionary". This is why I am sharing this speech with you.

I will now highlight the most relevant parts and give you my point of view:

I proudly showed her the cut out where she would sit in her wheelchair. I will never forget what happened next. She looked up at me and said, “How come I don’t get to sit on the bleachers like the other kids?” 

Many people simply assume kids with disabilities always need some kind of special accommodation: this might be the case, but it is not always so. We should always ask the person instead of making assumptions.

when we use the medical model as our way of perceiving disability we view children who have them as a problem that need fixing, and we separate them from their peers without disabilities. This is why we often lead with pity- we feel sorry for people who are broken and need fixing and we feel charitable by helping them

As I have said before, disability should not be seen as a problem that needs to be fixed. A kid with special needs is just like any other kid, disability is a part of him and there is nothing wrong and nothing to feel sorry for.

We feel good that we have done something kind for “those poor children.” We make a lot of assumptions here that children who have disabilities have a poor quality of life, can’t learn and can’t achieve.

It makes me really mad when people assume kids with disabilities can't be happy, successful and have a good quality of life just because they can't walk or talk or do something that is considered very important. The problem is that many people who do not have special needs see a disability (for example being on a wheelchair) as something very negative and they don't think they could be happy in that situation. This idea is so present in their minds that they can't even change their opinion when they see a happy kid in a wheelchair, because their prejudice is too strong.

When speaking about the social model, Torrie says we should view societal barriers as the problem, and not the child. Disability is perceived not as a negative, but as neutral. I think this is a much better mindset, because the child's disability would not be a problem if society accepted it and embraced diversity instead of separating the people who are considered "different".

Dunlap also speaks about events targeted at kids with special needs:

Why do children who have a disability label need their own special rodeo? What message are we sending to kids when we create a separate rodeo just for them?

I think it is good to have events for kids with disabilities, but these events should be related to their needs (for example wheelchair sports events), and even in this case it would be nice for kids without disabilities to be able to participate and try something new. In case of a rodeo, which is a general event, I think it is wrong to have a separate event just for them. All kids, with or without special needs should be invited and they should be able to have fun together.

I know that as adults we worry about, and we care about kids who might get left out of the prom experience, because they are different. High school is a tough place. But, what if we instead looked through a different lens and put our energy toward making sure that every high school prom is welcoming and inclusive to all the students who attend the school?

Special proms for teens with disabilities are not a solution: they would probably feel even more excluded, as if they were not good enough for the "normal" prom. We need to focus on making the existing prom an awesome experience for students with and without disabilities.

I wonder what underlying message we are sending, both to the teens with disabilities who may hear us say that they aren’t welcome at a school event on their campus with kids they have gone to school with, and also to the volunteer teen “escorts” and what message we are sending to them about pity and helplessness and separation by ability. And, really, would you have wanted your mom watching you at your prom through a video feed?

The fact that volunteer students get "credits" for helping with special prom makes it look like something that you wouldn't do if it wasn't for this credit. It also makes them think that they have to pity their schoolmates with special needs and that they can't take part in the regular prom. I know that parents of kids with special needs very often worry about them, but a video feed at prom is too much. Security staff would be enough.

I leave you with these questions, and I hope these ideas will soon be too common for a TEDTalk.

How do we want to be included in our communities? How do we want our children to be regarded? As something fragile, broken and “special” or as people who have a right to belong in our communities? I believe that when we examine our own mental models toward disability, we won’t default to pity and charity but will focus our efforts on making our society accessible to everyone, and everyone will benefit.

Wednesday, April 8, 2015

What I am grateful for

I am loving spring break! It's been a month since I left Germany and I was really feeling the pressure of being back at my home university and living at my parents' house again. Life is very different and, in some way, much harder than my life in Bochum, so I really needed a break.

Last week I was able to train more and take part in my first powerlifting competition this year. It was nice to finally catch up with some of my friends and teammates. One guy from my team made me very happy because I hadn't seen him in a long time and I really missed spending some time with him. It felt great to know he still cares about me and he is always there for me.

I also got to spend some time with a few friends of mine, and we had a great time together. They can always make me feel loved and they see my wheelchair as something to have fun with, which is uncommon for able-bodied people. I love their child so much and he is my partner in crime! My favorite thing about them is that they always treat me just like any other person, they never freak out because I could fall out of my chair and die (yes, a lot of people tell me that!) and they trust me to take care of their kid (I don't know if that's a wise decision but I am glad they trust me because I always have so much fun with him). I love how everything is so simple for them, even getting in a tiny car that's already full (you just have to hug your chair!). It almost feels like being with other wheelchair users, and that is amazing.

I am grateful for all the people who make me feel loved by embracing my personality and taking me as I am. I love you all!

Thursday, April 2, 2015

World Autism Awareness Day: Guest post by Philip!

Today is World Autism Awareness Day. I decided to post about what the world should know about it, because I know a lot of people just see autism as a very bad thing but don't know much about it. I am not an expert, so I asked Philip to write something for me.
Philip is 12 years old and he is autistic. He can't talk but he can type to communicate. He writes amazing things and tries to make people understand what it is like to be him. I started reading his blog, Faith, Hope and Love with Autism, a few weeks ago and I loved it! Philip also answers questions about autism, so go check out his blog and feel free to ask him questions on his Facebook page
Enjoy his beautiful words:

I want people to know autism is another way of being. I am weary of stereotypes that make us out to be less human than neurotypicals. I have listened to people talk negatively about autism since I was diagnosed. I learned to hate myself and think I was a monster for causing so much hardship. I can't let others continue living under popular ideas about autism. Let’s pretend you are like me. You can't talk; but having a thinking mind, you can understand. Imagine you are each day answering back what you mean to say. But only you can hear it. People hear your voice saying things you don't necessarily mean. They think that’s all you are capable of thinking.  People see you stimming by your repetitive flapping or tapping. They think there is no purpose. They don't understand the minute you stop, the moment is flooded with lights that hum, loud sounds that echo, kids moving too fast for me to keep up with, and people trying to engage me. It is hard on me to put my stims away but I try. People see your hyper movement. They prefer you to sit quietly. It’s hard to feel my body in space. I prefer to move because I can feel my body better and peacefully work. I work better sitting than I used to. The reason is now I get interesting lessons.

Interesting subjects like math, science, social studies, and language arts really stimulate my thinking, ease my mind, and teach me something about the world. I was not always taught in the way I am now. Many years of my life were spent in ABA school. I was made to do my drills over and over until I was so bored and frustrated with my teachers. I would melt down. I am telling you ABA is not the solution. ABA is long hours meeting pointless goals like pointing to flashcards and pointing to my nose. If pointless goals are your passion, then I pity your kids. People need to be able to set their own goals. No person should be without a voice. I believe in teaching communication first. Meaningful communication means being able to say what I really want to say. People must believe we are capable and our minds are intact.

Most importantly, my parents have been great. Love is felt when you are accepted. Love is felt peacefully when you are no longer seen by your momentary deficits but by your attributes that make you a complete person.

I peacefully make friends now. I learn normally. My school values me. I make my own goals. My parents support me by communicating to others about autism and me. They play. They make my life as normal as possible.

I think autism is no better or worse than a typical life. Each life is special in its own way. I love my life as autistic.  

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!