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.

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.

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.

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.

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.

What?! Railway station edition

Tonight I'm gonna tell you about a couple pretty weird and somewhat disturbing things that have been said to me, mainly because I use a wheelchair to get around.

"Do you need help?" 
"No, thanks, I'm fine"
"But I can't leave you here alone, you are so defenseless!" 
"You must, I am an adult and I don't need any help!" 
"It is cold, do you want to come to my place?"
"NO! Now go away and leave me alone"

This was pretty much the conversation I had with a man I had never met before. I was at a railway station in Germany, waiting for my friend to come pick me up. It was one of my first weeks in Bochum, so I was not very confident with my German and I had never been there before. As soon as that man approached me, I was kinda scared because there were not so many people around. When he said "You are so defenseless", he made me mad.
Why can't I just take a train and wait for my friends like anyone else?
Why do I have to be defenseless just because I am sitting on a wheelchair?
Why do you assume I can't take care of myself?
Why do you insist on doing something for me when I already told you I do not need help?
Why do you invite me to your place? That's creepy!

Another similar conversation I had with a man I didn't know at another station was:

"Do you need help?"
"No, thanks."
"Are you sure?"
"Yes!"
"Do you wanna come to my house?"
"NO!"
"Okay..."

This conversation didn't make me as mad as the first one, it was just very creepy. It somehow made me laugh, especially when I told my friends about it.

I wish people understood that, even if I use a wheelchair, it doesn't mean I can't take care of myself and go about my business just like any other adult. I hate being treated like a child.

Unlucky song

Tonight's post is about a serious matter.
A few weeks ago I came across this song on Youtube and, as I listened to it, it made me really upset.
Let me tell you why:
This song is about Aden, a child with Cerebral Palsy, he is referred to as "unlucky". How does his disability make him unlucky? You can't assume this kid is unlucky just because there are some things he can't do. This is the title of the song, the main focus of the whole song is to show how "miserable" his life is.

Here are some of the most insulting and judgemental lyrics in my opinion;

"Can I ask you why you love me?" "Thank you for giving so much love to me" A kid - with or without a disability - should NEVER have to ask his parents why they love him. That's just what parents do, they love their children. This is normal, they are not doing him a favor by loving him. The fact that he has a disability does not mean he shouldn't be loved as much as any other kid.

"I'll never speak to you/walk with you..." Why focus on what he can't do instead of what he can do? I am sure he has many abilities and he deserves the world to see how able he is. CP may have taken his ability to walk and talk, but it has blessed him with a beautiful smile and made him able to appreciate the little things in life, why does no one see this part of him?

"...someday they will look at me and say we've come to set you free" Free from what? From the wheelchair? From his "miserable" life? A kid can be free on a chair, his wheels are his freedom, and he can have a life just as happy as anyone else. The only problem here is the way the society sees him, as unlucky and unable to live a fulfilling life. Society makes him unlucky, not cerebral palsy.

"but until that day, all that you can do is look at my eyes and see my dreams" What about interacting with him, playing with him and trying to see the kid and not just his disability?

I find this song disgusting because a kid with a disability is seen as a burden, as a worthless human being, but it is a wrong message! No song should carry such an insulting message, it's already hard enough for disabled kids to understand how awesome they are, they don't need society to let them down. I know this probably wasn't the singer's intention, but this is the message we get from this song, and it is very wrong and dangerous.
The society's perception of people with disabilities needs to be changed as soon as possible.