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.

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

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.

Update on planes, books and gowns

Hello!

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!

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!!!!").

BOOK FAIR: 

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. ;)

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.

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 2^nd 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): https://www.dropbox.com/s/ucqmrdwab71fhh6/wcmx-wm_fb.avi

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 13^th 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 15^th 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 1^st in the qualifiers, unfortunately didn't have luck on Sunday and placed 6^th . The 2^nd 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 3^rd 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