Remember this?Wheelchair stories: public transport

Quite sime time ago already, I wrote my very first blogpost. Since it is still relevant today, I’d like to share it again. Together we can improve the public transport facilities. I think it is important to speak up about issues you encounter, so we can tackle them. When people don’t know about it or don’t realize it, they can’t or won’t change it.

In my first blogpost, I would like to discuss my experience with public transport, focusing on my physical disabilities, requiring me to use a wheelchair.

First of all, I think a lot of people try to avoid public transport. It’s expensive and not very convenient. You probably have to travel to the station first, then you can use the public transport and you probably have to continue traveling after you ‘arrived at your destination’, because your destination is usually somewehere else. For people with disabilities it’s usually even worse.
Within Europe there are a lot of differences in how well the public transport is adapted to wheelchair users. Usually in the more western part of Europe it’s quite adapted, or so the governemnts like to think. Just last week I was in a discussion with a civil servant about the ‘great posibilities for disabled users to use the public transport’. It’s such a hustle!
If you have to use public transport while you’re in a wheelchair, I can only urge you to travel with someone. Often other passengers won’t help you (I’ll talk about the behaviour of passengers another time). And there’s the first problem really, because you’re so dependant. What if you can’t find anyone who can come with you?

Train

I can actually skip talking about the train, since I’ve never seen a train, I was able to go in with my wheelchair. I’ve been in quite some European countries and I’ve personally never come across a train with a suitable entrance. They always have stairs or ‘steps’, which is how the staff prefers to call them. “Of course our train is suitable for wheelchair users. You can’t walk stairs? No problem, you just have to take these 5 steps, that’s not a staircase “. Luckily, I can walk very short distances and occassionally it goes well enough that I can take a few steps, if I really have to. ‘Cause it still hurts a lot. The person who came with me has to take the stairs while lifting my wheelchair, so I always try to stumble inside the train by myself, because it’s heavy enough to lift the wheelchair without me in it (as you can probably imagine).
When you’ve overcome that obstacle, you’ll get a couple more. Another one I specifically encounter in trains: it’s too narrow (the doors and hallways). You can’t move at all, but you can’t sit in the doorway either. Usually in underground and bus there’s no space for you either. Sometimes they have a special spot for users with disabilities, but often these are taken (most of the time by people who don’t need it, but it’s just too crowded).

Mind the gap

This will probably ring a bell, even when you have no experience with wheelchairs at all. Especially London is famous for it’s kind, heart-warming message in the underground, a.k.a. subway (and  I think you can also here in the (railway) train?), which you won’t find annoying at all when you have to use the underground hours a day. It’s something we should be grateful about, I suppose. They warn you, in case you’ve never travelled to that station (or with the underground at all) or in case you’re really tired after your busy day at work or shopping. But I still wonder why they haven’t actually done anything about those gaps. I think solving the problem would be still better than warning for it. The excuse that the subway was build many years ago, is a popular one. Since every building and public place is supposed to be accessible for everyone, they sometimes try to fix it.

Often the bus can get lower and the driver can call out an electric ramp. If he sees or hears you in the first place. I often experience that they’re already gone, when I can finally call for help and try to get in. And I’ve also encountered quite some bus drivers who just weren’t in the mood to do that and told me to get in the normal way, or just take another bus.

At the  underground, some stations have a little ramp (or hill), where you can supposedly access the underground easily. Again, my experience is that the underground train doesn’t stop at that spot, so I’ll have to ‘run’ to get to the front of the station and then try to get in. When they do stop there however, often there’s still a huge gap. And of course most stations don’t have this yet (it was old, remember?). When you ask staff for help in that situation, they’ll often tell you to use the bus instead.

Elevator

Last but not least, the elevator. It’s surprising how many underground stations or railway stations, don’t have elevators at all or not suitable ones for wheelchair users (too narrow..). Then I’m not talking about the manners of other passengers yet, because that’s often a problem with elevators too. Sometimes the staff tells me there surely is an elevator, when I ask them where it is, because I can’t find it. In Budapest for example, they got angry with me because I was standing right in front of it. Yeah, a giant escalator.. that’s not an elevator.

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[Photo of four very long, shallow escalators with some people on it. And the sign exit Kijárat go up.]

When you’re walking on crunches you can sort of still use the escalator (although that’s not so easy either). But with the wheelchair, it’s just so dangerous! I’ve heard of wheelchair users who can use an escalator by themselves, by letting their wheelchairs stand in a certain way and a lot of arm strengh to hold this position. I’ve no idea how to do this and I don’t think I’ll ever dare try or learn this. So in my case, I need (usually at least 2 people) who can lift the wheelchair. The person at the front of the wheelchair has to stand backwards (facing me). I wasn’t going to talk about the manners of other passengers yet, but for thise one I’ll make an acception. Of course mostly the other passengers often don’t understand why we’re moving so slow (we’re not walking, so it’s the escalator’s speed) and often quite some will start pushing and yelling, apparently to make things easier.

Well, this was a ‘summary’ of my experiences with public transport. I’m happy with every little thing they adapted, but there’s still room for improvement, since it’s still (a lot) harder for people with disabilities (in this case wheelchair users) to travel this way than for ‘normal’ people. I hope you won’t have to experience this, or when you do, it will go well. Please go prepared, because that can help a lot. Do you have any experiences with using public transport? Maybe some advice?

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The threat of becoming homeless

My fellow-Hippo and I don’t have a huge amount of money, like most people don’t have. I do not consider us poor, but we couldn’t live of our own money. Because of our disabilities and chronic illnesses, we can’t work, not even 2 hours a day. There seems to be this image to people blessed with being able to work and healthier bodies than ours, who think that this is like a vacation. Who wouldn’t want to get paid for doing nothing? Well, me for example. And it is not like the real situation at all. Because of our age and school/work history we fall into this gap. There is a lot of discrimination against “people like us”, as you might know. Because of this stigma that says we deserve this ‘punishment’ and that we are lazy, it’s hard to get any kind of financial support from the government. We have a little bit together, but they might take that away, just like they took away the financial support from my fellow Hippo, just because they are trying to save money. Let’s say that we have 500 dollars a month, which I’m not saying that we do, I’m just giving an example. All that money would be spend on rent. Then we still have insurances, taxes, food, electricity, treatments and medication that isn’t covered and a lot more stuff. And no things for fun, which are very important for your quality of life. The experience of living instead of surviving. I think it helps against (the risk of getting) depression too (please note: you can get depression when you have things in your life that other would consider luxury or fun).

I don’t consider us poor, because sometimes I can do something fun, which I know a lot of people can’t. Our rent goes to the health care provider, because we rent our home from them. They get a lot more money than just our rent, because they get thousands a month for our health care (which they don’t provide). We’re stuck, because we can’t afford to move. If you want to move to social housing, you need prove that you have a salary, which we don’t. And the rents are usually higher than 500 a month, which if we have that amount a month, then we still need more for food and other basic needs. But we need better care, which we won’t get as long as we live here. And we can’t live without care, it is not a luxury for us. But a house is one of the most important things you need and it is way more difficult to get than you might think.

We have been homeless, my fellow Hippo and I. And when I was a child I sometimes had to sleep on the streets, because it wasn’t safe at home or because I was kicked out. I really don’t want to live on the streets again, but we can get kicked out any moment and we have been living like this for many, many years. Frankly, the stress every day is just too much really. I want to have this big bag stuffed with things in case we need to leave asap. Because of the contract we had to sign, we can be kicked out the same day for no real reason. They’ve already tried it many times and I’ve been able to stop them so far.

When you are in need of daily care, there are not many options to live in a home. Usually uou have to live in an institution or hospital or other group (please note that relationships are usually not allowed, so my partner and I would have to seperate just to get a roof over our heads). I’ve lived like that many years and I don’t want to live like that anymore. I’ll write a blogpost on that too some other time. Sometimes I think: everyone is allowed to live on their own, but somehow we aren’t. And without an address, you can hardly do anything. What is one of the main things you need to fill in on forms? Your address. Without a roof over your head, you can’t have a bank account, or insurance, or get financial support, or get health care etc. Etc.

Sadly, most people don’t recognize the urgence of the situation, like when my fellow Hippo was homeless. Kicked out of his house, because his parents didn’t want a disabled child, because the disgrace was too much for them to bear??? Nobody would give him a home, they would say: he has parents, he can live with them. Or: he should change himself so he can follow their orders etc. Etc. They just wouldn’t understand. But it is possible that you are kicked out by family for good. And that you can become homeless. And it is so difficult to get help once you’re homeless.

When I see someone who seems homeless, I really want to help them. I want to bring them to my house and let them stay there, but I’m not allowed to do that (if I do that, I will lose my roof). And so far the only person I was willing to lose my roof for, was my fellow Hippo. And if necessary I will do that again. We will stay together, no matter what. I just really hope it won’t go that way…

Wheelchair stories: the nutcracker on ice

I’ve been to the Nutcracker on ice, an amazing show from the imperial ice stars. I love figure skating, but I’ve never seen it live. And it isn’t a big thing around here. I wish I could have done figure skating in the past, although I can’t recommend professional figure skating seeing what injuries the olympic figure skaters end up with for the rest of their lives. I was already excited for months to see this show and ordered a wheelchair ticket with an companion ticket. Eventually I found someone to come with me, who was like ‘meh, might be cool to see’ instead of ‘boring..’ As you probably already figured out from my first sentence, I don’t agree with it. And I think it is a great show for everyone, the entire family. There are elements for everyone in it, such as a magician for the children and amazing figure skating skills for which you don’t have to know whether is it a double axel or triple flip or triple lutz. I have never seen a ballet or dance show and am not really into interpreting art such as dance, but I enjoyed seeing things I could connect and I think it was great for the ballet lovers and iterpreters and for those who go in blank. The only thing I did as preparation was reading the story of the nutcracker on wikipedia, so I would know what it was about in big lines. I also don’t know much about classical music, but I liked the music. I think the ice dances matched well with the music, but I’m just a layman 😉


[Photo from a scene of the show with the prince and the girl]

They also had nice costumes (during the famous Waltz of the flowers they were of course dressed as flowers) and played with lights. There was even an aerial acrobatics act and with fire. There was so much happening on the ice floor/stage, that you couldn’t see everything. It was simply magical and when it ended, I thought I would never be in a fairytale like that again. It was stunning and beautiful. I’m kind of a sensitive person so it can really suck me in the moment. So when I was home again, I really wanted to go again some time. But because I can’t move myself in the wheelchair I always need a companion and there was nobody who wanted to come. Usually it ends with that, but this time I got some courage and had an idea, which people thought wasn’t really going to work, because it was unusual (but I’m stubborn so hey). So one day when they performed again, I called the theatre (all by myself and I hate calling. I was so nervous but I had this adrenaline rush of excitement to see the show again) and said I wanted to go to the show and order a wheelchair ticket, but that I needed some help because I didn’t have a companion to help me. So if they could pick me up at the entrance and push me to the seat (I actually stay in my wheelchair, but they can remove a theatre chair so you can sit/stand there). And when the show was over push me back to the exit and bring me to the toilet during the intermission and help me to order a drink (you get a complimentary drink with every show). The first person I had on the line was unsure and connected me with another person who liked my enthusiasm and thought it was nice to try out.

Nutcracker On Ice
[Photo from a scene of the show which includes lights on the costumes]

It was great, even though I was both really excited and very nervous (the adrenaline rush helped me). I can never go somewhere on my own and this time I could! Now I can go to the theatre even if I can’t find anyone else to come with me and I love it. I think there are things you can enjoy doing/seeing on your own and I definitely can with these things (although it’s also fun to go with someone!). I don’t feel uncomfortable because I can call or text with my fellow Hippo while waiting, although it’s funny to see that I’m usually the only person alone and other guests can find that very strange. Maybe it’s an idea for you too, if you’d like to go to a show and you don’t have someone to go with you (although I do still need someone to drive me to the theatre and pick me up, but I know someone who is fine doing that and really excited for me, but doesn’t want to go inside the theatre). I don’t think it is a strange thing to ask the staff and they are happy to help. Although they might be confused first when you only order a wheelchair ticket or when they think they only have to show you the way, because they think you can roll yourself (and keep you waiting for 45mins – yay for whatsapp and a smartphone. If I can stay in touch with my fellow Hippo, I won’t panick as much and don’t feel alone). Going to shows are one of the things I can do, because they are usually not that long (approx. 2 hours including intermission usually) and it is quite close to where I live, so I can rest the days after and before. Only issue is that I still have to pay the higher first rank fee for a wheelchair place (the places are usually not that good, pretty high up in the back, usually it’s the last first rank row) and I wish I could choose my rank (just like other people) to make it more affordable. But I look for discounts everywhere, lol.

<I>Nutcracker on Ice</I>.<br />© Imperial Ice Stars. (Click image for larger version)
[Photo of an aerial acrobatic act during the show]

I found out that usually you just have to ask. People can forget about you, even when you arranged something, but they’ve almost all responded well when I remind/ask them about it (except for the grumpy lady at the ticket booth who didn’t want to call anyone, but to be fair I think she didn’t really understand that I was a. alone and b. can’t roll myself, although I did tell her multiple times). Asking is difficult for me, but I’ve really grown (when I compare myself to myself 😉 ) and this time it brought me something great. I’ve got something I can do sometimes 🙂 And you feel way more miserable when you’re just standing somewhere all alone and people are just walking by you. So preparation is key for me. Maybe it’s something you can try out too or maybe you already have. Please tell me about it, I love to hear your experiences or wishes, also when you’re a more able bodied person! Oh and I think it’s  a positive thing for the theatre too, because they can sell an extra ticket when I’m coming 🙂 Can’t wait for my next theatre “adventure”, it makes life more fun for me (going out of the house and do something fun now and then).

 

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Smoking a right, breathing a luxury?

It’s probably not what you expected, since my PTSD and my other disabilities would make it difficult for me to sit outside (comfortable chairs anyone?). But really, the main reason why I can never enjoy an ice-cream or a diet coke on a terrace, especially when the weather is nice, is because people just really have to smoke.

Sometimes it feels as if their freedom, their right to smoke, is more important than my health or my freedom to leave my house, or sit on the balcony or in the garden (neighbours smoke). Or get inside a hospital without choking. Apparently breathing is far less important, it’s just my health you know?
I know not every smoker thinks like this, but sadly most people do think and act as if I’m one big fat liar, since smoking can’t possible be this harmful. Even non-smokers usually think I’m exaggerating when I have to get inside because someone is smoking. Or when I ask them to not put my wheelchair there, because someone is smoking. Or when I walk into a room and wonder if a person who recently smoked just walked by this room.

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[Picture of a no smoking sign (cigarette with a red circle around it and a red stripe through it) and next to it the text: Please  no smoking.]

I wish I wasn’t this asthmatic. I wish my lungs weren’t as bad and I wish doctors would help me with it. I have an inhaler but it doesn’t work for these unplanned moments when I completely can’t breath. I can only use it before I’m going to do sports. I’d love to go outside, but I can’t. Smokers are everywhere. It’s even more saddening that smokers have been reducing the health of my lungs too. For example: I had to live for a few months with someone (a narcissist) who would smoke everywhere in the house and I’ve never recovered from that. He knew what he was doing to me, but he didn’t care. In stead he had other people bully me for it and force me to stand next to him in the smoke. He would ‘suddenly’ smoke a lot more when I was around….

I’m sorry for my rage, but I feel like too many people just don’t know how harmful smoking can be for other people. That it can really be a severe problem and not just someone thinking it has a ‘bad smell’. I obviously don’t always feel as negative about this problem as I do now. But it is a severe problem that I have to deal with everyday and it really takes the fun out of going anywhere.

Do you have asthmatic problems? How do you deal with smoke? Do you have any tips? I usually put my hands in front of my mouth, then it takes a bit longer for me to faint.

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Reblog: Ben McCormack – Arrested For Child Pornography Crimes, And No-one Cares About The Children Being Abused

Healing From Complex Trauma & PTSD/CPTSD

Ben McCormack – a reporter on A Current Affair – here is Australia, has been charged with child pornography crimes, including distributing child pornography and conversations involving child sexual abuse.

See this link for details http://www.msn.com/en-au/news/australia/a-current-affair-reporter-ben-mccormack-charged-with-sending-child-pornography-material/ar-BBzsUvV?li=AAgfYrC&ocid=U206DHP

Social media is rife with this news. People are talking about what scumbag he is. People are laughing at the hypocrisy of him being someone who chases people down the road about lesser crimes reported by A Current Affair (ACA). People are scorning the ACA program, and the main host of the program. People are suggesting maybe people should wait and hear the facts before commenting. Some are even suggesting maybe he was accessing child pornography for a case he is working on for ACA. And meanwhile, the reports being made, are making it very clear that these charges are not in any way linked to ACA or Channel 9, who broadcast the show.

And amongst the hundreds of comments I have scrolled through…

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Share: my blogpost has been picked up by Teenvogue

Hi everyone. I’ve been in a lot of health issues so that’s why I haven’t been really active. I want to update everyone soon, but I probably can really start blogging again after the exams in May.

Anyway, I just noticed that my blogpost that was published by the Mighty, has now been published by Teenvogue. I had no idea they were interested.. Thanks WordPress for your statistics, otherwise I would have never known. Since I want to help others with my tips, therefore wanted to be read, I think this is a good thing. Although it feels weird that nobody let me know about it. You can find the Teenvogue article here

The adventures of Doggy: womanizer vs. courtly love

Our Doggy hasn’t been castrated because that can give some health issues and there is no reason to do it. We pay close attention to him and keep him on the leash. If the other dog owner is watching his/her female dog too (she might come to him and try to jump him) then nothing will happen.

Just like most humans, most dogs are interested in love. Or that other thing that doesn’t necessarily have to be connected with love: sex. Our Doggy is usually ‘interested’ in every female, especially when they’re in season. Let’s just say that a male dog usually jumps on a female dog quite soon. Not a lot of dating in restaurants, going to the cinema and giving expensive jewellry beforehand. Usually Doggy is a womanizer. However, one female dog is different for Doggy. It really is a very sweet sight to see and I’d like to share it with you.

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[Photo of a puppy, holding a red rose with his snout and wearing a black bowtie.]

When Doggy is on the leash, he’s usually very calm when meeting other dogs. He stands still so they can meet him or just passes them by. However, when he meets his Kimmy* it’s different. When he spots there he wants to run towards her, wagging his tail even more than usual. His flappy ears in his “happy position”. The same applies for Kimmy. She can’t just be calm and quiet either. She’ll bark and wag her tail and run towards Doggy. Doggy will lie down, so she knows she can stop barking because he isn’t going anywhere, and wag his tail vividly and when she’s close enough jump upright.

It’s different because with her he’s very gentle and despite having seen her a lot and she liking him, he’s never actually ‘jumped’ her. He will only give her sweet and careful licks around her snout. They might lay their heads on each other while standing or lying down or “kiss” each other even more. It’s so sweet and I’ve never seen Doggy likes this before. Yes, he has been impressed by large female dogs and admired them. But not as attentive as this and not without never even trying to do “netflix and chill”. It seems as if he doesn’t even think about that, because he wouldn’t want to accidentaly hurt her feelings.

Kimmy knows where Doggy lives and when she passes the house she will stand still and wait a bit. Her owner knows she has to wait for a little while, or she won’t come with her. If she sees one of us Hippos she will wag her tail and bark, waiting for Doggy to come out. Even though they sadly haven’t seen each other for months now (walking on different times and different routes), she will keep doing this. And when they see each other again, it will be as if they’ve never been out each other’s sight.

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[Photo of a dog licking another dog sitting next to him.]

What do you think, can a dog actually fall in love? Have you ever seen something like this between dogs?

*Just like Doggy isn’t Doggy’s real name, Kimmy isn’t his girlfriends real name.

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