#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!

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.  

How it all started

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

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

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

A few weeks later, Aaron told me he would be coming to Italy for a TV show. They were filming in Rome, a 6 hour drive from my town. Not close, but not as far as his hometown, Las Vegas. I begged my parents to take me there, I knew I had to meet that kid. It took me a long time and a lot of effort to persuade them, but they eventually agreed to drive me to Rome.

When I met him, I was blown away by what he could do on his chair. Even my parents were pretty impressed. We talked, played and had fun, and when I left Rome I knew everything was going to be ok, my dreams could come true and I could become the person I had always wanted to be. That was only the beginning: I could be independent and happy. My wheelchair was my favorite thing to play with. My disability was a blessing.

Cerebral Palsy Awareness Day: Thank you CP!

WARNING: this post is extremely crazy and revolutionary.

Today I want to thank my disability for several reasons.

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

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

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

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

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

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