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

#WCMXlove

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

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 "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.

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!