The story of how I got disabled.
For those that don’t know me that well.. (Or maybe just for myself, to keep my story clear.. or to overshare.. or to break the silence..)
I am currently 24 and have graduated from university about half a year ago; chemistry mayor. (Oh, and I am actually Dutch.. So I may mess up my sentences every now and then..)
I have done my master’s degree at another university than where I started off during my bachelor’s, because of reasons that will soon become clear.
Even though I have successfully obtained my master’s degree in chemistry with special notes to my practical skills, I still am having quite serious issues over what I am about to tell you.
I am visually impaired, probably roughly on the edge of legal blindness, but since we don’t use the same notations in my country as basically anywhere else, I have no way of knowing if that assumption is correct. (But if the system works as I have ‘interpreted’ in, my vision is below 20:200..)
Also, I have always been sort of against calling myself ‘disabled’-> I am perfectly able of basically anything a ‘normal’ or ‘average’ person is capable of.
(Well, sure there are some exceptions, like, I would not be able to drive a car.. But cars are overrated anyway so 😊)
I can hear you asking: ‘why is this even relevant? You seem to be doing perfectly fine, having your master’s degree and all?’ – Indeed, why would it be?
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So here comes a recap of the first of two Facebook posts that have become even more relevant as time passes me by..(Okay, actually it has become more of a rough translation, because I don’t like leaving stuff out..):
‘From ten to zero’ (Posted on November 10th, 2015)
The post started with a general apology for all the drama that was about to unfold, sort of admitting that I just needed to share what had been going on, for I couldn’t deal with it on my own.
Before I proceed with this recap, I want to add that during this period in my life, I have had a lot of support from friends, family and more; I don’t think I have ever felt as much love and care as I have during this period – Dear everyone, I probably wouldn’t still be here without you. (Yeah, I may have stated stuff like that before, but I can assure you that it’s heartfelt.. And I am not ashamed to admit that.)
When I wrote the post, I was in my third year of the bachelor’s. I was participating in a special minor from biopharmaceutical sciences, that was mainly focused on medical chemistry. I had chosen this minor because it included a course called ‘bio-organic synthesis’-> my life’s passion.
Before I even know about organic chemistry, stuff like that had always interested me very much and I wanted to ‘become a researcher.’ During my bacherlor’s, I found out about organic chemistry and the possibility of doing a PhD -> quite the motivator! (No, but really.. I actually put a lot of work in more courses, especially the ones I was interested n.)
Even though I have never been a ‘straight-A student,’ I definitely had potential to do a PhD. (But more about that later.. Because holy shit, let’s not derail the story into a wibbly wobbly timey wimey chaotic mess just yet.)
Okay, so back to this minor, or perhaps first some more background..
Even though I don’t like to focus on my disability, it has probably sort of always played an undeniable role in my life. Growing up ‘different’ is though. It always is. Especially when people can see something is wrong with you, even though you don’t see that yourself. (Hah! - Wait, was that the first pun? We’re what, roughly 600 words in the story? Damn, I must be really off today..)
Anyway, for all my life, I have been pushing myself to do everything as normal as possible. Normal primary school, normal secondary school, normal high-school. Sure, I walked up to the blackboard as a kid, and had special binoculars to read the board in high-school.. But that’s just the way things were – no harm in that, right? (I mean, I am not even sure who I am trying to convince here.. Is it you.. or me?)
There are a few reasons as to why I have always pursuit a ‘normal’ life.
First of all, I hate being labelled or stigmatized. My disability may make me do some things a little differently; but it does not make less (capable) than anyone else.
Secondly, which is actually linked to what I stated above; fuck stigmatization, Really, fuck that shit. I guess I have just always felt moved by the way the world works and the way society has its ways of putting down those that are different in any way. – Yes, this goes much further than just my stupid eye disability..
As a kid I wanted to become a super-hero.
During my teens, I guess, I figured that that actually was possible in a way.
By just ‘making it’- I thought - I could set an example to others; don’t let anyone tell you what you can or cannot do or who you can or cannot be, because you can do or become anything or anyone you set your mind to.
And I was well on my way of doing so. – Oh, did I shine brightly as I aced my synthetic organic chemistry final.. My one and only 10/10, all perfect score.. on university level.
This theoretical synthetic organic chemistry course was one of the two main reasons I had chosen to do this minor.
The other one, perhaps needless to say, was a practical bio-organic chemistry course given by a man called R.. During my first year at uni, we had had an argument and I felt like he sort of hated my guts.. So, I wasn’t too happy to see he would give the course. But at the same time, he didn’t seem that bad at the time I was applying for the minor. He had seen the way I worked hard for my organic chemistry courses (he assisted in the previous organic chemistry course, on which I scored 9/10..)
Before even applying to the minor, (say it was in June..) I had also spoken to him about the fact I wanted to do the course, especially because I also wanted to do my bachelor thesis in organic chemistry, (then my master.. etc..)
The only reason I sort of ‘asked for permission’ is because I have always done so. I have always been open about the fact I am visually impaired, just to make sure people know in advance. – I mean, maybe if things are out in the open, people won’t feel the need to stigmatize me so much?
R. had seen me do practical work in the first year, and he didn’t see any reason of why I couldn’t join the course. However, he did advise me to also do a computational course (rather than another practical one), just to let me try that as well.
As a bit of yet another extra layer of background, before I even joined the study itself, I have spoken with several people about all of this -> my disability and the possibilities. One conversation I can remember was with a woman called A. (some sort of study advisor.) She was very, very positive and told me she was fully confident I would do great. But, if there would be any trouble, I just have to tell her, and she would help me find a way to work around it. – I never felt the need to. You see, I have done several practical courses, all of which I passed. Sometimes barely, but that had more to do with my writing skills.. (Really, my outstanding practical skills have actually saved my grades, more than once.)
So, back to the story..
Somewhere around the end of September, I went to speak to R.. In our conversation a few months earlier (the one where I sort of asked him permission to join ‘his’ course in December) he had also said he thought it would be best if I worked together with someone during the practical course. Because I was determined to pursue a carrier in organic synthesis, I wanted to tell him that I’d rather do the course alone – to truly test my own capability. (I was pretty sure I could pull it off, otherwise I would of course not have asked, but say, as a final confirmation.)
It didn’t come to that. He started the conversation with saying ‘that there had been a problem…’ He told me that there was a chance I was no longer allowed to work on the ab, because of ‘insurance reasons’ – if I were to cause an accident, the insurance wouldn’t pay because of my disability. (The fact my disability makes me extra aware of safety and work extra securely wasn’t even considered..)
After our conversation, R. told me he was going to figure out the depths of it. He told me he was going to discuss this with all people involved, because everyone knew me as a motivated and capable student.
I thanked him nevertheless, not wanting to ‘shoot the messenger’..
Roughly a month passed, a month of silence. I could feel myself slipping down again.. Yet, I was able to hold on the hope that this had all be some sort of misunderstanding. (Also, just a month before this, I had gotten my first tattoo, which made me feel pretty powerful. Oh, silly me.. I still sometimes feel like I have jinxed it all by raising my chin like that.. >.> - Ah well, let’s no go there again, for once, let’s just not.. </3)
Fun fact, the synthetic organic chemistry course was also in this month. I t was a rough month, but I fucking aced it. And that was what I needed; extra proof of my determination. So I e-mailed R., who told me to talk to the SOC professor (the dean of the research group at which the practical course was going to be held – nice guy btw; he was still on my side and may even have remained on my side till the end..)
After being sent back and forth in e-mails between R. and that professor a few times, I talked a bit in real life with the SOC professor and he told me that it would be best if I went to see R. next Monday.
On November 9, 2015 (which was my 21th birthday) I went to have a nice and cozy talk with my bestest friend R.. (He truly is the most tactful and sympathetic man on this planet! God, I love him like I would love having my nails ripped off, well, actually I would have preferred that over this bullshit..)
He started off with saying he didn’t really have time, so he’d keep it short.
With a grin, he told me that: ‘He actually isn’t supposed to tell me what he would be so glad to tell me..’ (because he had yet to discuss it with P., the dean of the study.) I can’t remember what I asked in that brief moment of hope..
‘But it’s not looking good for you!’ – Without any space for me to think or truly speak, the conversation shifted towards the fact that I had to go and talk to A. (the study adviser) and P. (the study dean) to see what my options were to even finish my bachelor’s.. Because sure as hell was I never going to be able to do my bachelor’s thesis at ‘his’ group, not even to speak of my master’s..
The whole ordeal didn’t take much more than 5 minutes. I remember running off to the restroom as fast as I could. Never before had my make-up been smudged all the way down to my chin. (If that doesn’t paint a clear picture, I don’t know what will.)
I was really fucking heartbroken. All I had worked for got crushed like it was nothing. Did it all mean so little?
I remember being really confused a well. How did this happen? And why did this happen now? Why didn’t anyone tell me about this before?
And most importantly.. Who caused this?
‘I tried so hard and got so far.. Just to be shoved away again.
I know I have to move on, to take a different direction perhaps. To figure out a way to finish my studies nevertheless – when one door closes..
Sigh, I know I shouldn’t let this get in my way.. but right now, I just can’t..
How is one supposed to act once one’s dream gets shattered?’
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Next will be the ‘recap’ of the second post, almost a year after the first. I regret not writing more in between these two posts.. But that was just because all my efforts were wasted. Just believe me when I say that I have talked with a lot of people and done basically anything in my power to figure out how things got to be the way they were. During the time in between these two posts I managed to finish my bachelor’s degree at ‘another’ university. (My luck, the educational track was shared by two universities, so I ‘simply’ hopped to the other university.. Which actually wasn’t simple, but that story is not relevant at this point.)
‘Never cross the heart’ (Posted somewhere in October 2016)
The truth; prepare for drama.
The Thursday before I wrote this post, I had been to my bachelor’s graduation ceremony. I didn’t want to go there at all, but since it was not just my ceremony but also that of my husband, we decided to go after all. (We had been asked to hand in a personal PowerPoint slide and actually decided to hand in one together, since we had gotten married that year – they didn’t bother to even mention it..)
Anyway, during that time, I had started my master’s degree at a university in Amsterdam (2-hour travel from my home..) and felt really depressed. Getting out of bed felt like a life sentence – and that was just the start of the day. Everything felt pretty fucking pointless, I mean, why even try? The whole situation at my old uni was troubling me a lot. It didn’t matter that I had provided myself with a new start; I was broken, so fucking broken. What’s the point of trying to fight a system build on ignorance and stigmatization? – I felt like I could trust no one, that even though I was given a fair chance, it would probably be taken from me again.
Even though I knew deep down that the system was just fucked, I was filled with self-loathing. ‘I mean, they were right, right? I am legally blind, who am I fooling? I shouldn’t be trying stuff like this, I am never going to be good enough. What if they were actually just trying to protect me?’ – The lies we tell ourselves..
Anyway, back to the ceremony..
We had intended to go there and just fake through it all. Just shine on and make them regret sending me away. However, hehe, I am not a fake. (Oh and trust me, I tried. I even decided not to wear my necklace, just as a way of accepting the fake fuck I planned to be.. – Oh sweet irony.)
All the stuff that had been building up in the past year.. All these unanswered questions, all the powerlessness..
The exact moment when I had to collect my degree and smile for my dad to take a picture, I couldn’t hold my tears no more..
Not wanting to make a scene, I hid my face and just sat down in order to let the further ceremony proceed as planned.
At this point, I think it’s time for some more background. During this past year, I had spoken to a lot of different people about the whole situation. I even went as far as going the university’s ombudsman.. ..who was going to help me.. ..empty words.. (I don’t think the story is relevant at this point; let’s just say he probably didn’t want this all to get out in the open because that would make a bad name for the university.. Or at least, that’s the impression I got from the way he acted,, It’s much more complicated. Ugh..)
I also went to see P., the dean of the bachelor’s study a few times. He did ‘help me’ with arranging things to get to finish my bachelor’s at the other university, but that was all he did – and probably just because I was actually a good student so me graduating without a delay would be good for his statistics. – More about him later.
I had also spoken to A. a lot about this whole ordeal. I actually trusted her, so I had also talked to her about some personal issues that had also been going on around that time. She seemed to really want to help me, yet she couldn’t help me figure out who had caused all this or the reason why.. I remember asking her if it would be possible for R. (from before) to have anything to do with this, for he was the one that told me there was ‘a problem’ in the first place.. But she almost violently denied that. She was absolutely sure, because, she told me, R. is usually the one to help students who are struggling to pass classes or get stuff arranged. – I believed her, sort of feeling guilty to let my own prejudice, my personal issues towards the man lead me to such foundationless conclusions.
I had also spoken to the dean of the master’s study, L. This is not really relevant to this story, but I do not want to leave it out because this specific conversation actually still haunts me to this day.
I went to see her to talk about the possibilities of doing my master’s at that university (the one I also did my bachelor’s.) L. knew me, she had actually given one of the courses I had taken (and passed nicely.)
In the conversation, she made up all sorts of comparisons as to why she would deny me from doing the master’s. Before all of this, I was the first visually impaired student they had ever seen at this study. But at this point, I suddenly wasn’t. For example, she had had another visually impaired student that had to stick her head in the fume hood to measure things. (I am still not sure this is even true, because someone with that little common sense would probably not even able to finish high-school..) Either way, the way she told me this was more as an attack than just information. She also told me that there was another student in her masters, and all her experiments failed. (Assuming it was due to her disability.. Experiments sometimes just fail, you know?)
To finish off what was left of my self-esteem, one of the last things she said to me was: ‘You are just trying to deny you are disabled.’ – I can’t even.
I think this is one of the most hurtful things someone has ever said to me. Especially during a period in my life where I was finally sort of accepting who I was and be open about everything..
..Enough about that.
To summarize it all, one thing became clear over time: nobody had my back. The general attitude towards me had shifted from ‘that one talented and motivated student’ to ‘the stupid disabled kid that is going to get us in trouble..’ Basically, all they were doing was trying to save themselves and each other. Again, I regret not have written down more about all the conversations I have had, because that would make this all more believable.
Because yes, I sometimes, most of the time, feel like a fraud. That is must be all in my head, that I must not be so negative, that not everyone is out to get me, etc.. – Yes, not everyone is out to get me, there are a lot of loving caring people out there, but not those pieces of shit that were involved in this. (There were some people at my old university that would probably have loved to help me.. But no-one likes to risk it all for just some student, and I can understand that..)
Anyway, back to the story..
After the ceremony, there were free drinks. (Ah, drinking! Another habit I had picked up that year..)
As we (my husband, parents and me) were standing there with our drinks, A. (the study adviser from before) walked up to me; ‘Ahhhhh, congratulations! How are youuuu? How is Ansterdaaaam?’ (I had specifically told her it was a secret that I was going to do my masters in Amsterdam, because I didn’t want anyone to ruin that for me.. But what to expect? Spineless cunt..)
With a clear face and calm tone, I told her that it was hard for me to focus on my studies, considering all the stuff that ha happened to me. She said something like: ‘Oh, that’s a shame.’ And walked off.
I felt pretty proud of myself for shaking her off like that, not making a scene, etc. I even remember ‘bragging’ about that to my husband and parents, and probably getting a ‘pad on the back’ for that. – and trust me, I felt it. I really did not want to make a scene. I truly wanted to leave it all behind me and move on..
Until M., (the new study’s dean who was completely oblivious to this whole situation..) walked u to me to have a little chat. This poor woman probably just wanted to meet me or do some chit-chat.. She got the full blow.
I told her all about what had happened the past year, how I felt depressed, and how just knew I needed to know the whole truth in order to move on with my life.. Obviously, P. (the other dean) noticed something was going on and joined the conversation. I could clearly notice I was not the only one no longer being able to control my emotions. P. got really irritated, telling me they had tried everything but couldn’t help me with unraveling the truth.
After some more of the ‘I need closure’- ‘We can’t give you these answers you are looking for’ drama, M. proposed to have a closer look at the whole situation. Based on something A. had told me before, she suggested to contact J. (some professor with a high function in the whole education thing, A. had suggested in the past that he may have had something to do with it..)
But since my part in this had started with the conversations with R., I proposed it would perhaps be best to ask him once more. Not to shoot the message, but just to start at the beginning of the source.
M. proposed to e-mail R. next week – I didn’t want to wait that long, so we decided to check if he was in the building and just meet face to face.
Long story short, he was in the building and we went to pay him a visit.
I told him about what had happened today, and how we basically wanted to ask him once more what he knew, since he was the one that told me there was a problem in the first place. I asked him if he had any who had started all of this.
With a straight face, he directly admitted that he was the one that had started this. His reason behind this was that he simply didn’t want to take responsibility for me during the bio-organic synthesis practical course or anything related to that, ‘because he wouldn’t be able to guarantee my safety.’ (He did get defensive though, stating J. was the one to eventually ‘seal the decision’ - which was of course completely irrelevant, like, anyone could ‘agree’ with any statement produced by someone with influence..)
Of course, I asked him why he had decided all of this at this point, and not before or during the time I was signing up for the course. He simply replied with: ‘I didn’t know your vision is only 0.15’ (actually, it’s even less but okay..) I replied with something like: ‘What does such a number even say? It might as well had been 0.25, 0.35 or 0.55..’ – He shut me off, stating my argument was going nowhere.
Then, I told him it simple didn’t make any sense. He had known (about) me since day one, and actually co-supervised one of my very first practical courses. He knew exactly how good or bad my vision was and what he could expect from me, working on the lab. (Really, nothing out of the ordinary there..)
Mockingly, and with a somewhat arrogant voice he said: ‘Oh, yes, I know you all too well.’ Then, he started stating some bullshit about how he had seen me work, and how my ways were just unacceptable for an organic chemist. (Like for example standing too close to a rotary evaporator.)
I told him that we are students for a reason, that we are there to learn. I was even able to come up with something that happened between us during that first practical course. How I made some (non-sight related) rooky mistake, and how he had told me that I had to do it differently – and so I did. (He didn’t actually tell me, he been growling at me since day one.. Not just at me btw..)
Again, he cut me off, stating that he could name a dozen things more, but to which he wouldn’t go into further argument over.
He also started another bullshit story about how I have always had been given a special treatment, such as working together with a partner.
I told him this wasn’t true, because everyone was teamed up with a partner during these first few practical courses. – He shut me off, stating ‘he knew for sure how HIS practical courses were.’
Eventually, my dad tried to intervene, to which R. got irritated, stating how he was through with being cussed at – he told us to leave. (Who exactly cussed at who?)
As we left the room, with a lot of irritation in my tone, I gave him the kind advice not to crush people’s dreams in less than 5 minutes (on their birthday) next time. And to maybe look after your students some more after dropping such bad news on them.
Obviously, this too got ignored. As well as all other signs of emotion, both verbally and non-verbally during all the conversations we had had.
A few moments later, as we walked down the hallway, I had a mental breakdown. I have said some things in front of my husband and parents I am not so proud of.. (I hate it when the people I care about see me in such a state..) Eventually, my vision went blurry (yeah, even blurrier than usual 😊) and I fell through my knees.
10 minutes or so passed, then guess what?
I can remember hearing me dad say: ‘oh, there he is..’
I can’t remember who spoke first, one of my parents or R. himself.
I remember his psychopathic emotionless voice say: ‘good evening’ – something snapped.
I remember screaming: ’My blood will be on your hands, motherfucker!’ – Words I am not proud of, but were, at that very moment, genuine and heartfelt.
He didn’t respond. Then, I added: ‘I hope someone will someday take from you what you have stolen from me!’ – words that are more than genuine and heartfelt even to this day.
He simply walked off – he didn’t even flinch.
Some more desperate cries I luckily can’t remember later, I remember grabbing some newspapers that were laying around and completely ripping them apart. (Honestly, I think the fact I was not alone at that moment have saved me a lot of nasty, nasty stuff..) – I am pretty fucking proud of how I handled that shit at that moment. Could have easily ripped either him or (more likely) myself to shreds.
To conclude:
I have had issues with this man from day one. But we are all only human, and I didn’t want to let my own experiences lead me astray. Deep down, I think I knew from the start that he was the cause of this all along. But it didn’t even make sense. Why would he do this?
Even to this day, it makes no sense. How can someone be that sick?
Later, I found out that R. had pulled similar (but slightly different) stuff to other people as well; probably just for the thrills. – This guy is a true psychopath.
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*Sigh*
Now comes the hardest part.
Today is the Ides of March, 2019.
It’s 00:24 AM., and I just don’t know what to say.
I thought that by rewriting this, I could maybe come closer to understanding the actual damage this has done to me.
The problem is, it has been, what, 3 years? – So much has happened – it still makes no sense.
I guess all I can say is:
I am disabled.
I am disabled by means of not being able to do stuff other people are able to.
I am unable to accept myself the way I was born. (I didn’t ask for this body?)
I am unable to be myself and do things in my own way – I am in constant fear of being judged. Being rejected. Being send away. Again, and again, and again.
(Honestly. I can’t even pour some water into a beaker in front of people without freezing up..)
I have become the stigma and am unable to conquer that.
Who really is to blame, is it me or you?
The system perhaps?
Well guess what; we are all to blame.
I have let it happen. – And I will never be able forgive myself for that.
I had one fucking goal in life. – And ‘you’ took it from me.
But really, it wouldn’t be fair to blame you.
I was broken from the start, held together by stupid sharpie doodles and a little bit of ink..
This could be about so much more..
But let’s not go there. Not today.
You know what?
Fuck you. I’m done.