The threat is near

You can find part 1 and part 2 here.
Warning: this blogpost contains strong language and is written in a depressive state of mind.

So, this blogpost is (again) about the threat of becoming homeless. I’m sorry if this is starting to get boring, but this is just the most important thing in my life at the moment. I can’t really think about other stuff anymore. That’s because a roof over your head is one of the basic needs. And you can’t do stuff like developing yourself on for example appreciating art, if you’re basic needs aren’t fulfilled. You can see this in the pyramid of Maslow.
maslow
[Picture with the pyramid of Maslow, showing a ranking of the needs. 1. Physiological (food,water, warmth, rest) 2. safety 3. belongingness and love 4. esteem 5. self-actualization. To reach number 2, number 1 needs to be fulfilled first etc.]
So how’s the situation? We need to leave sooner. I already wrote that was a possibility. Why? Because I didn’t trust their word. And sadly I seem to have been right. We need to leave within 14 days(!). Do we have another option yet? No. Do professionals help us? No. You know why? They’re busy, there’s nothing they can do for us because our situation is too complicated, it’s already 5pm, you should go to bureau Z (which just referred us to this one), or they go on vacation etc.

I’m starting to think of creating my own “back up plan”, meaning suicide if all goes to hell. Because I don’t want to suffer so much anymore and I think I would rather kill myself than live on the streets with all our disabilities. I mean I still have chronic pain and chronic fatigue and have to live with all the traumas, so daily life wasn’t that fun anyway. I just kept trying to make something out of it and think positively. But right now? F*ck positive thinking.

I still have a first plan (the suicide is the back up) and I’m still working on that. But I have no news regarding that yet. So far there are no options like at all. Finding an accessible house that doesn’t have a high rent seems impossible around here. Apparently houses still don’t have to be made accessible, or they are being made accessible by people who don’t know what you need for that (“the building is wheelchair friendly, just 3 staircases”). And a house while not having enough income seems impossible as well. We can’t get a higher income, some kind of financial support from the government…

Ugh, I’m sorry for my rant. It’s the stress I guess. What am I going to do right now? Well, ironically I kind of have to keep living like nothing is happening, just in case we can somehow avoid becoming homeless. So I’m still trying to go to physical therapy. Because I don’t want to screw up our life when eventually it was preventable. I need to think of the grocery shopping list, I need to plan some appointments in December with the physical therapist, try to eat healthy etc. It’s kind of weird how we now have such different parts in our lives…

I hope everything is going well with you. I hope you didn’t find my blogpost because you are in a situation that might turn out into becoming homeless. I wish you all a nice day with lots of fun. Everyone needs happiness and lighter moments.

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The threat is getting bigger

This is part 2. Here’s part 1 and here’s part 3.

A while ago I wrote about “The threat of becoming homeless“. Sadly, this is becoming more real every day. We need to find a new house before the New Year, with the risk of having to leave even sooner. Maybe September.. This also means that we need to find a new caregiver, but we aren’t worried about that. The current caregiver wasn’t really giving care anyway and we think there are a lot of people with their own little companies who might be able to help us better. No big institutions anymore.

tenant-eviction

[Image of someone being kicked out of a door, by someone else]

But now we first need a home, or maybe we first need money, so then we can find a home. That’s the main reason I’m not as concerned about finding new care, finding an accessible home is much more difficult for us. But the care is going to be tricky, because it has to start as soon as the other stops. Otherwise we don’t have food etc. Ugh.. I need time to make plans, but right now I just feel shitty. People need time to grieve, to feel sad or angry or shitty. After a while you can start thinking about the future. I already have a couple ideas, but it really depends on other people (whether the government will agree etc.).
I secretly hope we can stay in this house, rent it by ourselves. But for that the caregiver has to stop their leash, the rent needs to drop, the owner has to agree, my fellow Hippo needs a salary etc. I have hopes and a ton of stress at the same time. It is possible, but the chance is very slim and we’re trying to do everything we can to grab it. Oh and I need to help my parents with their worries about us (which results in a lot of anger towards us, which I can understand, but I don’t appreciate how the roles in our family are always in reverse since we always need to emotionally support them).

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Reblog: A heartfelt “thank you” to Senator John McCain.

Very interesting point of view, it seems the logical explanation and by doing this he knew people were going to hate him for the first yes.

Lucky Otters Haven

John McCain US Senator visits Slovenia

The ACA (otherwise known as Obamacare) was hanging in the balance, poised to be killed by a group of cold-blooded old white men that only cared about more tax breaks for themselves.

Led by the compassionless Mitch McConnell, they operated in the darkness, behind locked doors, and only with other Republicans.   They turned their backs on the pleas from thousands who would sicken and possibly die without the ACA or the Medicaid expansion that went with it.    Not once did they show any concern with how the people felt about what they wanted to do.

As it turned out, they had no real plan.   They had seven years to come up with a better replacement to Obamacare, but it became increasingly obvious the only thing they really cared about was repeal.   Every plan they came up with was worse than the last.  CBO scores predicted these…

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Share: my recommendations this week

I’ve been doing a lot of reblogs in the past and have been thinking of making a more personal post with why I recommend something. So this is my first little list. My recommendations this week (in chronological order). Due to my health, I wasn’t able to colect more this week.

  1. https://esthervandaag.wordpress.com/2017/07/16/dat-moet/
    A personal Dutch blog about her son with classical autism and intellectual impairment. I’ve been reading her posts for a long time and they always hit me. It feels as if I can really see and feel everything happening myself and I can feel the powerlessness. And the happiness about things that seem minor to other people, but mainly disabilities do not give positive things. It is down-to-earth and sometimes heartbreaking. I really wish things will go better for her family, but there’s not much we can do exept for giving the little support we can.
  2. https://luckyottershaven.com/2017/07/17/people-who-capitalize-random-words-for-no-reason/
    This is a much lighter post regarding something I’ve been wondering about for a while. The random capitalization or not-capitalization (when they should be capitalized) of words. I have no idea why people do it, but it can be very difficult to read if every word has capital letters. Maybe it’s a new thing that originated from texting? At least the “using numbers in stead of letters” trend seems to have cooled down. Because the combination would be dreadful to read.
  3. https://beautybeyondbones.com/2017/07/17/your-ed-questions-answered/
    Another serious post with lots of information and insight on anorexia and how you can help your kid if you think he/she has an eating disorder. It is also inspirational and I think she does an amazing job in spreading awareness and sharing her stories. I haven’t found a better blog regarding eating disorders yet. If you’re a Christian you will probably resonate with her as well. I’m not, but I’m happy for her  that her faith has saved her life and gives her courage and happiness.
  4. https://luckyottershaven.com/2017/07/22/please-stop-calling-suicide-victims-selfish-or-weak-reblog/     This is actually already a reblog, but I like the intro she gave it and thanks to her I found this post. A very important subject and I agree completely. It’s not about “only the strong people survive” and I too think that the critique comes from a very fortunate position of ignorance, of never having to go through those feelings and situations that trigger it.

 

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.

16182166141_a84c320029_o.jpg

[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

This is part 1. For updates go to part 2 and part3.

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. Usually, people blessed with being able to work and have healthier bodies than ours, 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. Thanks to family.

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 (assisted living house). 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 sort of 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. Or they can always pretend a reason, like when you have a job interview while you’re pregnant.

When you are in need of daily care, there are not many options to live in a home. Usually you 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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