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?

Photo source

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

Reblog: Sexual Revictimization: Are you really more likely to be victimized a second time?

Self-Care After Rape

Key findings from several major studies (from 2000-2011) that explored the correlation between child sexual abuse (CSA) and subsequent victimization in adulthood, which illustrate a significant link between childhood and adulthood sexual revictimization (as well as related health problems).

Lalor, K., & McElvaney, R. (2010): Child sexual abuse, links to later sexual exploitation/highrisk sexual behavior, and prevention/treatment programs.

  • Numerous studies suggest that sexual victimization in adolescence significantly increases the likelihood of sexual victimization in adulthood. Studies suggest that sexual victimization in childhood or adolescence increases the likelihood of sexual victimization in adulthood between 2 and 13.7 times.
  • Several researchers speculate that mediating factors caused by CSA contribute to higher risk of sexual revictimization. Childhood abuse may interfere with normal development of interpersonal relatedness and affect regulation, which in turn decrease abuse victims’ awareness of danger. Negative long-term effects of CSA may be attempts to avoid or cope with negative emotional…

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Reblog: Hippos – Did You Know…

A Momma's View

Image result for Image hippo

… That when hippos are upset, their sweat turns red? I stumbled across this weird fact and dug a bit deeper. Actually it’s more like they secrete an oily red substance that acts as a moisturizer, sunblock and protects them from germs. This also makes them look like they are sweating blood. While looking up the “red blood fact” I found some more interesting facts about this beautiful grey giant:

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Reblog: If you make jokes about paedophiles & child sexual abuse – you are sick and heinous ~ Lilly Hope Lucario

Healing From Complex Trauma & PTSD/CPTSD

Rolf Harris is court again, for more of his victims coming forward and stating he abused them. It’s bad enough that so many people defend him, and so many people ‘feel sorry’ for him because he is old.

But, today I read comments where people are making jokes about child sexual abuse and paedophiles.

How fucking sick is that. I despise people who can turn such heinous and abhorrent abuse and make jokes about it.

There is nothing funny or humorous in being sexually abused by a paedophile. And anyone who thinks its funny – is as sick and abhorrent as the paedophiles are.

I don’t want to live in a world with paedophile apologists, and rape apologists. Where people protect paedophiles, makes excuses for them and blame the victims, or say the victims are lying.

My mind always goes straight to thinking about the victims, and what they must be feeling when…

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Letter to my gynaecologist

I’ve translated the letter I sent to my gynaecologist. She never replied, but it did give me some closure, because I could finally tell her how I felt about everything she did. I really wanted her to understand how she hurt me, because I don’t want her to hurt other women (she only treats women) in the same way and it would have helped me heal from this trauma. I still don’t think she actually understands, but writing this down and actually sending it to her did help me a lot. 

Dear Doctor,

For a long time, I have been in doubt whether I should do something with my complaint in regard to your consultations. I have decided to try to put it into words again. A while ago, I wrote you an email in which I tried to explain what went wrong for me. Because of that email, we made an appointment to talk about it. At the beginning of that appointment, you made it very clear we were not going to talk about my previous experiences and feelings. You treated it like a regular appointment and I was not allowed to say anything about my complaint. Even during this final appointment, I felt as if I was not allowed to make my own choices. I felt pressured by your decisions and there was no space to talk about the things I wanted to discuss. I have tried this again after the appointment by sending you another email (for example that I wanted to try TENS).

Your responses hurt me. First, it seems as if you underestimated my ‘history’, even though I told you about the severe consequences for me. You still did the internal exam (which I did not want). Then, I actually want something and you denied me. Later in your email you say that the pelvic floor physical therapist should decide, because of my ‘history’. Especially for a patient with my kind of history, it is very important that the patient can decide herself. It all comes down to: things you do not want to happen, will not happen and thinks you do want, will happen, because this is the opposite of the so-called ‘history’. You have denied me this in two ways. There is nothing wrong with giving tips or consultation and agreement, but pushing and forcing is wrong. For me, it feels as if we have never been able to consult and agree, but you just told me what you wanted. You never asked me (regarding TENS) what I wanted and what I thought I could handle. Once again, you drew your conclusions without actually knowing me or consulting with me. It feels as if you underestimated the amount of knowledge and experience I have with myself.

The internal exam of our first appointment was against my will. I told you this and you knew about my ‘history’. You could not give me a medical reason why this exam was necessary, when I asked about this multiple times (just because you always do it, is no medical reason)  and you forced me to do it. During the internal exam, you treated me like I was only a piece of meat, that could not feel, whether it were emotions (panic) or pain. You did not take the necessary care during the speculum exam. Whithout a word, you opened the speculum completely as soon as it was inserted. This hurted me physically (I told you beforehand that I never had a fully opened speculum before, and now you even did it immediately, without pauses for my body to adjust). You did not respond or stop when I made it clear you were hurting me. During the exam you never listened/looked at any of the signals my partner and I gave you (not even my body trembling, wizened and trying to get out of the chair, or my partner asking you to stop). This exam, which I absolutely did not want but you forced me to, was a traumatic experience for me.

After the exam you told me you could not help me (and did not want to help with the painkillers etc because you did not know me). I usually had to come every 6 months, to see if the painkillers were enough and because I find it difficult to stay in touch with a doctor otherwise. I find it difficult to make contact when I have an issue or question. You put me out of gynaecologic care after our last (second) appointment and I actually don’t want to have contact with you anymore. But now I do not know how things will continue. Will there be a doctor taking over my case? Because I don’t know about this, I also do not know if your warning is a realistic one in my situation. There are other test results available which another gynaecologist could use and an exam against the patient’s will is against the law. So even if a doctor wants to do an exam and I don’t want this or not at that moment, this shouldn’t be a problem. Sadly, this went wrong. Despite not knowing if someone will continue with my case, I also don’t know what I want. The experiences I have with you are still too fresh and too painful, so maybe I will never go to a gynaecologist again. Although it might be good for my physical health.

When I received the pages you have written in my file, I was shocked about the many mistakes that are in it. There are mistakes on different topics: such as the treatments I had before, my use of medication (I absolutely do not overdose!) and that the exam went very well and with my consent. Instead of trying to get everything changed, I decided to have it destroyed.

I can understand that it was not your intention to hurt me and give me a traumatic experience. Sadly, it did turn out this way. I hope this letter will help you to understand and treat patients with a similar ‘history’ better.

I cannot emphasise enough how important it is that the patient can really talk and decide with you and that you are very careful about pushing people or forcing them. Besides that you should make sure that you actually listen to what the patient and/or her companion says and that you plan some extra time for the appointment, even if it is ‘only’ a conversation. It is important that you prepare well together before an exam. Things you could do for example: give detailed explanation beforehand about everything that will happen; ask what the patient does and does not like/what might be triggering for her during the exam and which signals she might give you (such as not responding to anything/being frozen or moving nervously with her fingers). We do not all have the same experiences and the same associations. For someone putting a hand on someone’s knee or saying certain words might be calming or encouraging, but for someone else it might remember her to her ‘history’, because the attacker did or said the same things.

Lastly, I want to report to you that I have already had contact with the pelvic floor therapist. She said that TENS for menstrual pain is not done internally, but externally (by using patches on the lower back). I wanted to tell you this, so maybe you can inform other patients about this treatment better.

Kind regards,
Mel (Hippo256)

P.S. I assume my letter will not be put into my file, or will be destroyed because this is part of the file that will be destroyed.

I am not so happy about my letter, I think I could have done a lot better. I wrote and sent it in a whim. Writing this and reading it out loud for the first time was very emotional. But I was already emotional beforehand and that’s when I got the urge to write it down. And now it’s a bit easier for me to talk or write about it. So I think I should be proud of myself, even though I could have said things better. I was trying not to insult her, because I don’t want her to be angry but I want her to finally listen to me. I hope by sharing this letter with you, this might help you when you’re having trouble with your own doctor. I was inspired by this Dutch blogpost to put my letter in a blogpost. Because when I read that blogpost, it really helped me. It inspired me, gave me some extra courage to share my letter and I knew I was not alone. Which helped me accept these things that happened with this doctor was not just all my fault.