Disability Awareness Week 2021

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Als je vragen hebt over je inzending, neem dan contact met ons op via email UnliMited-students (voor studenten) of UnliMited-staff (voor medewerkers/Phd-kandidaten).

My neurodiversity has affected my work more than I would like it to and care to admit. I “lose time” for two different reasons: (i) constant exhaustion and a blank mind from sensory overstimulation, and (ii) the energy it takes me to deal with the guilt from needing certain accommodations and missing events.

As long as I can remember, my surroundings were not tailored to my needs. In school, I quickly taught myself the lesson contents by reading and observing and I always felt disturbed by my peers. As a child, I had many tantrums over not wanting to attend school anymore, due to both boredom and being overwhelmed by the sensory overload I was experiencing. I spent every day just looking down on a piece of paper where I doodled simple shapes to cope with the bright lights in the room and trying to isolate the teacher’s voice from all the other sounds and sensations in the room. Instead of recognizing my needs, I was asked on multiple occasions to stop drawing out of respect, to look at others when speaking to them, to show more enthusiasm about class, and to “properly listen” (even though this was the only way for me to listen). I still reach for a pencil when attending meetings.

After school, I would spend my time sleeping (up to 16 hours a day/night) and refused to leave my room. These patterns continued in university until I suffered from a burnout. This experience led me to therapy and my therapist suggesting that I may have “sensory processing disorder”. However, this diagnosis is not recognized for adults in the ICD and DSM, which has so far been limiting my access to corresponding support and has me questioning whether I am “neurodivergent enough” to request accommodations meant for individuals with autism spectrum disorder (even though I know deep down that I need them). This leads me to my current work situation.

I know that the following is quite a controversial statement to make, but COVID could not have come at a better time for me. With educational activities moving online, learning and work suddenly became accessible to me. For the first time, conversations with others, leading and participating in class discussions became something I could do with ease and enjoyed. I could lower the volume of other’s voices to not be in pain anymore because of the noise level or pitch; I could adjust the brightness and all other present stimuli in my environment. Nobody expected me to look into their eyes while speaking, nobody expected me to engage in in-person group work, and I could read self-written communication protocols from my screen without anybody noticing. This gave me security and also saved me a great amount of mental and physical energy that I usually invest in ‘masking’ my challenges and processing the overwhelming amount of sensory input that I perceive. In turn, for the first time, I was able to follow other’s questions and comments and to give qualified answers. And I finally understood that education must have been this easy for others all along. Digital accessibility has allowed me to learn, to live up to and surpass my own expectations, and to pass my knowledge and experience on to others with ease.

Though I enjoy my workdays nowadays and trust my qualifications, I am still overwhelmed and very exhausted after “simple” activities, because I process them so deeply and in so much detail. This leaves me sleeping for 12 hours a day and sitting in silence and darkness with noise cancelling headphones for another few hours. After life went back to in-person and I realized how much I was suffering, I have since made changes to how I approach my workday and social activities. I always wear earplugs or noise-cancelling headphones and no longer care who perceives this as odd, I leave social events early and only attend when it is absolutely necessary, and I allow myself to take breaks to recover from meetings and tasks instead of desperately powering through a day just to fulfill my hours. Instead, I focus more on fulfilling my weekly duties, that I am usually able to do very well and quickly - when my work environment is tailored to my needs.

[Have you studied yet?]

I'm sitting on the couch, it's two in the afternoon
I need to study
I'm sitting on the couch, I'm on my phone
I need to study
I look at the clock, it's four in the afternoon
I need to study

There's dirty dishes in the sink
What did I need to do?
I'm on my phone, I start to panic
I need to do the dishes
I'm sitting on the couch, my heart pounding, it's seven in the evening
I need to do the dishes
I'm sitting in bed wide awake, it's two in the morning

"There's dirty dishes in the sink"
I know I know I know

"Why didn't you just do it?"
I needed to study

they all say
theres pressure
to pass and perform
and achieve and excel
so to no ones surprise
they are all so unwell

but its different for me
im different from them
i stopped feeling pressure
since feeling the pain

theres pain and
theres shame
theres why me? and
theres please stop!

there is im sorry
there is no more medication for you
im sorry, so sorry
there is just nothing more that we can do

im sorry, so sorry but
how should i pass and perform
how should i achieve and excel
how should i even feel this pressure
how? tell me how
should i be unwell to succeed
when getting well is all i need?

Nati Sack

Ik ben zogenoemd slechthorend. Rechts 100% doof en links een verlies van 25%-30% afhankelijk van de mate van verkoudheid. Ik heb geen gehoorapparaten omdat het een zenuwkwestie is. Niets aan te doen derhalve.

Mijn ouders hebben mijn doofheid pas ontdekt toen ik zes jaar oud was. Ikzelf wist toen allang dat één oor ‘kapot’ was. Mijn moeder dacht dat ze met een obstinaat kind te maken had. Ik luisterde namelijk niet als ze me riep, ik zette de tv op een hoog geluidsvolume etc. Volgens mijn onderwijzeres had het geen zin mij muziekles te laten volgen. En Beethoven dan? Mijn ouders volgden gedwee het advies van de onderwijzeres en ik zat op woensdagmiddag braaf in de muziekschool op de gang te wachten totdat mijn vriendjes en vriendinnetjes klaar waren met hun les.

Ik wilde zo normaal mogelijk functioneren. Toen mijn vader voorstelde na een aanrijding met een brommer op een veel te smal fietspad, om een SH-bordje op mijn fiets te monteren, heb ik gezegd dat ik die fiets nooit zou gebruiken en dan wel liftend naar school zou gaan. Het plaatje is er nooit gekomen. Ik wilde ook gewoon mijn luistertoetsen op de middelbare school doen. Ik had een vrijstelling kunnen krijgen, maar dat wilde ik niet. Door overconcentratie heb ik de Duitse luistertoets grandioos verknald, maar dat terzijde.

Toen ik op latere leeftijd aan de KNO-arts vroeg of de slechthorendheid hersteld zou kunnen worden zei hij dat ik geen 16 meer was. Bij jonge mensen proberen ze het nog te herstellen. Ik antwoordde dat ik ooit 16 jaar ben geweest en toen die mogelijkheid niet kreeg aangeboden. Haha, dat was waar, maar ik moest ook niet te veel van de kwaliteit verwachten. Pas als het echt slechter wordt zou een operatie een optie zijn.

Ik compenseer het gebrek aan gehoorcapaciteit door te kijken wat iemand zegt. Soms vang ik in een lawaaierige omgeving klanken op en maak daar dan in de context van het gesprek zinnen van. Dat gaat niet altijd goed en levert soms hilarische momenten op. Tijdens de crisis merkte ik dat die mondkapjes een crime voor mij zijn. Ik zie niet wat er gezegd wordt. Dat geldt in mindere mate ook voor het online onderwijs. Het turen op een schermpje en trachten te horen wat iemand die zacht praat zegt, is lastig. Maar soms is het ‘gebrek’ ook handig. Bijvoorbeeld als je naast iemand zit, die niet zo interessant is. Ik laat die maar praten en zeg af en toe ja of nee. Of in slaap vallen op je ‘goede oor’, want je hoort immers niets.

De slechthorendheid bij het geven van onderwijs is soms lastig. Met name in grote collegezalen waarin studenten vragen stellen. Aangezien ik niet hoor waar het vandaan komt, - een stereotoren heeft geen toegevoegde waarde voor mij - moet ik zoeken naar wie praat. Ik vertel de studenten dan dat ik niet goed hoor en of ze hun hand willen opsteken. Onderwijsgroepen gaan goed, tenzij er veel geluid in de omgeving is. Maar daarvan heeft iedereen last. Ik wil nog een anekdote vertellen. Toen ik AIO werd, kwam ik zonder problemen door de medische keuring. Vervolgens werd ik UD en moest weer gekeurd worden. Dus ik langs bij het keuringsinstituut. Ik vertel bij de gehoortest dat het geen zin heeft om het rechteroor te testen. Vervolgens zet dat mens (ja mens, want het sloeg nergens op) 120 dB op het rechteroor. Ik hoor dan wel niets met dat oor, maar pijn kan ik wel voelen. Degenen die in de wachtkamer zaten om ook getest te worden vroegen verschrikt toen ik weer naar buiten kwam, of hen dat ook te wachten stond. “Alleen als je niet goed hoort”, antwoordde ik. Een vervelend gevolg van die exercitie was dat ik niet goedgekeurd werd. Men twijfelde of ik wel onderwijs zou kunnen geven.

Eerst moest het ziekenhuis dat mijn doofheid had geconstateerd verklaren dat de doofheid niet progressief was. Die verklaring heeft een half jaar op zich laten wachten! Ik vond de gang van zaken opmerkelijk want toen ik als AIO onderwijs moest geven was het blijkbaar geen issue en er waren geen problemen.

Wat me opvalt is dat mensen vaak bij slechthorendheid niet denken aan doofheid, maar aan domheid. “Ze zal het wel niet snappen.” Ze gaan het dan vervolgens in kleutertaal formuleren en als ik het dan nog niet hoor, is het verdict: “domheid.” Een andere reactie is dat mensen denken dat ik arrogant ben of hen negeer omdat ik niet reageer en hen blanco aankijk. Dan merk je dat non-verbale communicatie een grote impact heeft. Slechthorendheid zie je niet. Dat is eigenlijk de kern.

Kortom, slechthorendheid is af en toe lastig, maar zeker te ‘doen’. Ik ervaar het niet als een beperking. Bovendien weet ik niet beter.

M.

Teachers wondered why I did not use my full potential. Buying bread at the bakery and greeting people was an insurmountable task, an overwhelming event that I needed to run from as fast as possible. Being mentally tossed around by my interests with no control over what I wanted to do and over what I actually did; what I rationally needed to do had only a small weight in motivating my actions. Spending only some hours at school completely drained me from my mental resources. Not being able to join all social events or meet with friends as I was just too exhausted. Drinking alcohol sometimes seemed to provide a solution to a complete mental shut down in the overwhelming environment of café’s. All that considered it’s nothing short of a miracle I am where I am now, a staff member at a university. I must have done something right occasionally.

On the flip side: I enjoy the smallest details in music. The all engulfing trip of being submerged in the atmosphere of a piece of music or movie touches me deeply. I’m able to exactly locate sources of sound. I dig deep into certain interests with genuine relentless passion. I’m never bored as just my mind is entertaining/stimulating enough. Finally, the sheer pleasure of complete silence.

At age 41 I’ve been diagnosed with autism spectrum disorder. Pretty late for a diagnosis, perhaps because it isn’t severe, but it’s enough to disable me in a large number of situations. It seems my brain gets very easily overstimulated by busy sights, emotions, and particularly by sounds. It feels like there is a poorly functioning filter that should manage the information; prevent sights, emotions and sounds from being processed, but it doesn’t do a very good job. Consequently, all that information enters my brain and none of it gets processed properly. It’s overwhelming and paralyzes my thinking leaving me mentally exhausted. Perhaps it’s like being an over-trained athlete or a vulnerable engine of a race car; very capable, but not now, now I’m recovering or in repair.

              Now being able to explain the previous struggles doesn’t make current struggles go away. Rather, there are new situations with new struggles. I’m still overstimulated on a daily basis. The stress to get the kids to be ready for school or my kids getting into an argument about seemingly minor details brings me to the edge. While my partner seems to navigate through the jungle of the kids their emotions and creatively finds solutions that satisfy everyone, I’m left with alarm bells going off and red lights flashing in my head all the while either being frozen to the ground or feel the need to run away. After that I need at least an hour to recover and get that feeling back of wanting to do something useful. Sometimes (particularly after a night of poor sleep) I’m in such a state that I can only passively consume very simple bits of information, that usually boils down to staring at Youtube videos, while rationally knowing that I should be doing other things and feeling guilty in the end. Other examples of currently difficult situations concern sudden thoughts that selectively demand my focus, that firmly settle in my brain and that just will not leave me alone. I spend many hours staring out the window rebuilding my house, inventing an irrigation system for my green house, fixing my car, or building an indoor turtle pond, all in my head. That time is then not spend on what I should be doing hampering any work-related productivity.

              The diagnosis and possible mechanistic explanations did help in finding potential solutions. These mostly concern setting up the right conditions to function well; managing my environment enabling my brain to manage the incoming information. These include going to bed early (not as easy as you might think), creating moments of silence, being physically active (e.g. running really helps!), and mindfulness meditation. Being aware of the daily pitfalls helps to avoid them, but many cannot be avoided as they are part of normal everyday routines. I suppose it comes down to accepting the daily punches and their consequences and being prepared to deal with them by frequently and sufficiently recharging. I guess I’ll manage.

A staff member

I have been suffering from severe anxiety and panic attacks for longer than I can remember. It is often at its worst in certain stressful situations such as exam settings and final presentations. People often underestimate the effect that mental health can have on your studies. To be sitting in the exam hall and starting to hyperventilate so badly to the point where your hands go completely numb and you cannot write anymore. It is a long and volatile journey, some days are better than others, but it is important to realize that you are never alone. Talking to others has helped me more than I could ever imagine, and you will realize there are more similarities than you ever thought there were. Underneath is a poem I came across on the internet and it really struck a chord with me. I wanted to share it in case it struck a chord with you too.

Sometimes, I feel uneasy
My arms tremble as if they’ve lost control
Anxiety walking upstairs
Like a team of ants tiptoeing on my core
And the sensation to punch, so violent
Like I want to hit the world for being so unfair
The fear
Absence of freedom
Of being a prisoner inside my own mind
Help me, let me go, I need it
I don’t want these thoughts echoing in my mind
As for I am kind and I’m filled with willingness
To live a passionate life and not just survive

- Adriana C Nava S  –

              First of all, I will present myself. I am Rebecca Lizier, a second-year European Studies student at Maastricht University. I am half Italian and half German. If I would stand in front of you and introduce myself to you, you would most likely not notice my disability. But also, if you would know me better you will probably not notice that there is something different with me (for some something wrong). You will notice if I would read aloud or write something for you. Then, you will think … but this is not normal why is she doing so much effort to read, or why is she doing so many mistakes. This is because I have a severe form of dyslexia. There are many forms of dyslexia mine is focused on reading and writing, so orthographic mistakes. These two issues are interconnected because if you cannot read you cannot proofread what you write, so, the mistakes are even more.

              I imagine it is difficult for someone that does not have this issue or has another issue to understand how one person has this difficulty. To explain it in a simple way my dyslexia is like someone who cannot see without glasses and to live normally you need glasses. However, “the glasses” for a person with dyslexia are not easy to find. There is not a standard model of the 7 euro pare you buy in any supermarket in the world if you forgot your reading glasses at home.

              You will ask yourself but if she has an issue related to writing and read how is it possible: First, to write this input. Second, to have reached higher education. Simple answer I was lucky enough to have time to find my “glasses”. Why do I talk of time? Time is crucial for a child or a person with my issue or one similar to mine. As mentioned before, you need to find your way of reading and writing so, your way to study as a “normal” child or person. This process can take time because you need to try different strategies and one day you find the composition of strategies and methods that allow you to be as efficient as the others. In this process you need a supportive family, of course, but also really important to have supportive teachers in a school system that allows you to go on.

              Personally, I have been lucky. To begin with, my dyslexia has been diagnosed in 2010 where in Italy a law granting rights to students with dyslexia was issued. So, multiple movements allowed both my family and my teachers to inform themselves about the issue. Then, I have studied in two different school systems. Until the 8th grade, I attended the German School of Milan, so a German school system. This is a system in which the help for students with dyslexia was up to the teachers. Meanwhile, I finished my school in the Italian one, a very welfarist school system where, also thanks to the bad experience in the German school, I managed to flourish. I graduated with excellent grades from a good school and as the only one from my class I decided to study abroad in another language. And now at Maastricht University, I am having overall good academic results.

              Even if my story seems like a happy ending story it was hard and there were certain comments and experiences, I hope that no other students have to live through it. As, back in the days in the German school, a teacher told me “oh nice so you practice Judo, it’s is good maybe you should try to work in that sector considering you difficulties” and the same teacher said to your parents “your daughter is stupid, she does not mean it bad”.  Or to give a more recent example, it is for 5 weeks now that I am trying to explain to all possible people from the course coordinator to the Board of examiners of FASoS to the Disability centre of UM that I would need the exam to be read aloud. This would allow me to avoid to do unnecessary mistakes. They send me from one institution to the other without actually helping me. They are working with good intentions but apparently, there are not that many people with a strong case of dyslexia in higher education and the whole system seems a bit new.

              In conclusion I am really grateful to my teacher that believed in me and to my family and friends. And hope that in the future there are more dyslexic people also in university and excelling in school because they also have the potential, they only need a bit more time.

Rebecca Lizier

UnliMited roept studenten en medewerkers met een functiebeperking op om hun verhalen te delen. Ik ben een medewerker met een functiebeperking en geef hiermee gehoor aan deze oproep. Maar niet van harte.

In een inclusieve samenleving doet iedereen mee. Je neemt je plaats in, je hoort erbij. Je wilt dus juist niet zichtbaar zijn of een bijzondere plaats innemen. Medemensen moeten zich ervan bewust zijn dat iedereen anders is, niet dat ik anders ben omdat ik een functiebeperking heb. Kortom, ik wil helemaal niet zichtbaar beperkt zijn.

Maar wat wil ik dan wel? De samenleving, waaronder de UM-gemeenschap, is ingericht op de grote meerderheid. Zij lopen, zien, horen, lezen, werken snel, zijn nooit bang en kunnen alles tegelijk. Herken je jezelf? Welnee, want iedereen heeft wel iets dat hij/zij minder goed kan. Veel van mijn collega’s zijn verloren zonder hun leesbril. Anderen hoor ik klagen over de vele digitale vernieuwingen sinds we meer online werken (‘ik houd het niet meer bij, ik word hier te oud voor”). Dat betekent dat we de omgeving anders moeten inrichten en dat we ervan uit moeten gaan dat er individuele verschillen tussen mensen bestaan.

Voor de meest zichtbare beperkingen is dat al redelijk gelukt. Zo zijn veel gebouwen rolstoeltoegankelijk. Toch komt het nog altijd voor dat de invalideparkeerplaatsen het verste weg van het gebouw worden geplaatst. Dan is er rekening gehouden met rollende medemensen, maar net niet genoeg. Dat kan beter en moet beter.

Vorige week was ik voor het eerst in het MECC sinds de verbouwing. Mijn collega’s zijn enthousiast over de nieuwe frisse uitstraling. Ik kon de ruimte niet vinden waar ik moest zijn die dag. De bewegwijzering hangt hoog en heeft een kleine lettergrootte. Dat ben ik wel gewend, gebeurt vaker. Dan vraag ik om hulp. Maar aan wie? Een balie is er niet bij de hoofdingang. Als er al een helpdesk is, staat dat vast aangegeven op die kleine bordjes. Die ik niet kan lezen omdat ik een functiebeperking heb.

Bewustwording van studenten en medewerkers met een functiebeperking begint bij inspraak. Inspraak kan ervoor zorgen dat wij juist niet zichtbaar zijn. Inspraak bij de inrichting van gebouwen. Inspraak bij de inrichting van procedures. Als UnliMited die rol kan en mag vervullen, doe ik mee. Die verhalen deel ik wel graag van harte.

Caroline van Heugten

Hoogleraar klinische neuropsychologie bij FPN en FHML

Hi, I am John. I was born with a Hydrocephalus, in the common language referred to as “Waterhead.” Some also call it the invisible disability, for the fact that, although it is highly physical, one cannot see it.

The Story is free for you to decide whether it is sad and rather speaks of a deteriorating human being or an uplifting one. What it definitely should not be understood as is a story of pity. See, the “Waterhead” comes in many forms, some less complicated than others. Some lead to many complications, and some are rather easy to deal with.

I have been at Maastricht University for a comparably long time now, given some complications in the form of brain surgeries arising throughout the years. I do not see it as dark as some might think. I try to take every second in a positive way, embracing the people I meet and met throughout the years as well as the knowledge I gather.

With six brain surgeries throughout the time I am studying at Maastricht University and somewhat 30 over the course of life, one can imagine that despite the positive attitude, not everything has been sunshine and roses.

There were times when I wasn´t even able to brush my own teeth, to be exact. Though, I have always been a pusher. Gathering knowledge at a University (where people with my impairment do not often get to be) has been something that kept me going besides my family and friends. University gets a different meaning when you deal with vast pain and the danger of a deteriorating mind on a daily basis.

Without petting my own back, I am usually quite literate when it comes to writing and speaking, however having had to deal with brain pressure on a regular basis, my ability to speak, learn, and comprehend things faded multiple times throughout the years. I always fought my way back and had help in the form of good student counseling, friends as well as family. At the end of the day, though, I had to do it myself cause for the impairment being invisible, only a hand full of people would understand the matter.

In order to get the load of knowledge required for each course into my head, I use posters that I create myself for the content of every week. Those I hang everywhere in my apartment, even on the toilet. That way, the knowledge sinks in subconsciously.

Another thing that has helped me immensely in keeping a positive focus are coffee beans. No, not the way you think. I used them as a token. In the morning, when I get up, I would put a bunch of coffee beans in my right pocket. For every wonderful little detail throughout the day, like laughter, I share with someone, a nice conversation, or simply the smell of summer rain, I would shift a coffee bean to my left pocket. At the end of each day, I would count all coffee beans in the left pocket to re-live all the little, beautiful moments that we as human beings tend to overlook in our daily lives. Besides one starting to embrace the tiny things, you smell like roasted coffee beans on a constant basis, so it kind of benefits everyone.

Nowadays, I still do the very same thing but with imaginary coffee beans. No, I am not nuts just embracing life. I am not healed and will never be. Still, my doctors have luckily found a way to deal with the pain (for now), engaging in an experimental treatment, adjusting my implants in a way never done before. I am grateful for the place I am in and the people I keep meeting, still embracing life with every second.

Concluding the message of my sharing: No matter what the world tells you, keep pushing and fighting for your dreams.

John Koch

It is funny if you ask me whether I am (st)able
Correct me if I’m wrong but that is but a fable

Crooked and queer I was brought into the world
Understanding that I would be questioned by word

Unable to dissociate when to keep going
Or when to let it stop from flowing

I didn’t mean to hurt I hope you believe
It is always more difficult to grieve

Can’t imagine to weigh on your mind
Just praying that in the end it is love you find

I know, I tire some
And I go over whelming the safe space numb

Forgive my hyper sensitivities
They can but be part of these disabilities

Timesome by Vincent P.

Years have passed with me sitting in the same lecture halls.
New students come – leaving with pride over a diploma so bright
I keep that dream and fight to get a diploma in all my might
So what is it that is keeping me locked tight?

Present at university - I mostly sit in silence and observe.
I observe how others move forward - how they do not stand still like me
I am stuck in time - frozen in a frame of fear
My body and mind are imprisoned in a cell of traumas

I am not present in your now
Dissociation plunges me in deep wells
Deep wells that have no bottom, no echo and no light
Each well harbors a creature
It dwells in excitement when it catches me
I loose time and a grip on reality

When I see you look at me
I know that you do not see a whole me
Fragments appear in front of you
Sometimes healthy bits and lost pieces
Sometimes survivor bits and severed pieces

Well, - I got ripped into pieces…
When foreign hands laid on me and violated my body
When I had no power to stop the abuse inflicted on me
When I had to face attempts that threatened to take my last breath of air.

All above has an official name
My story is C-PTSD
My survival is daily based on a - how?
All I want is to feel safe in your now

I want to be free and experience life without fear
I want to enjoy what I study and make it to a professional career
I want to tell you that my academic path has its struggle and I need help
I call out to Maastricht University to not only to see me but our whole disabled community

I am one of many...
that whispers their own story in the dark
…all lonely

anonymous

Als ik denk aan autisme, denk ik aan de dag waarop ik volledig overprikkeld op de grond van mijn kamer zat te huilen en de wereld niet meer snapte. De dag waarop ik in de bibliotheek zat, gefocust op alles, behalve op mijn studieboek. De dag waarop ik voor de zoveelste keer gefrustreerd was dat mensen onduidelijke uitleg gaven omdat de kronkels van mijn brein niet snapten wat ze bedoelden. De dagen waarop ik dingen wéér te letterlijk nam.

Als ik aan psychose denk, denk ik aan de dag waarop het brandalarm afging en iets in mijn hoofd ontplofte. De dagen die volgden waarin ik mezelf terugvond in een kleine kamer op een afdeling in het psychiatrisch ziekenhuis. De maanden die voorafgingen, de weken die volgden en de eenzaamheid die ik voelde. Dat ik dacht dat ik nooit meer beter zou worden en voor altijd gek zou zijn. Dat ik nu beter weet. Ik denk ook aan de nachtelijke wandelingen waarin ik probeerde weg te lopen voor de stemmen in mijn hoofd. Probeer dat maar eens…

Als ik aan manie denk, denk ik aan sprankelende ogen en zeeën van ideeën. Een explosie van energie en daadkracht, passie en enthousiasme. Ik denk ook aan de dag waarop ik de bus nam naar Parijs en nooit meer terug wilde komen. Alle plannen die ik smeedde om de gezondheidszorg te revolutioneren.

Als ik aan depressie denk, denk ik aan de dagen waarop ik niets liever wilde dan de dood. De dagen waarop ik mijn bed niet uitkwam en geen contact wilde met niemand. Vooral niet met mezelf. De dagen die langer duurden dan het leven van Lamellibrachia en die leven dus best wel lang.

Als ik aan functiebeperking denk, denk ik aan zo veel. De momenten die zichtbaar zijn maar vooral de momenten die niemand ziet. De momenten waarop iets in mij breekt, waarop ik me eenzaam voel. Waarop ik niet verbaal kan communiceren omdat praten te moeilijk is. De momenten waarop de wereld zo moeilijk in elkaar steekt dat ik er geen logica meer in zie.

Maar ik denk ook aan die mooie uren die ik ben verloren door me in een hyperfocus helemaal te verliezen in een onderwerp. De avond waarop ik de theatervoorstelling waar ik naar uitkeek heb gemist omdat ik dit “nog even” wilde afmaken en het plots 22.00 uur was. Aan de projecten die ik met veel enthousiasme ben begonnen maar nooit heb afgemaakt. Maar wel van heb genoten. Ik denk aan de angst die ik voelde en dat ik deze angst nooit meer zou willen voelen.

Ik denk ook aan mijn studie waarmee ik al zo vaak heb willen stoppen. De frustratie en onrust die ik voel als dingen niet lopen zoals gepland. De momenten waarop ik heb moeten besluiten om vakken te laten vallen en wéér studievertraging te hebben omdat er onvoorziene omstandigheden tussen zijn gekomen. Ofwel het leven. Ik denk aan de momenten waarop ik mijn ervaring kon inzetten en iets kon betekenen voor mijn medestudenten door hen te laten zien dat ik ook maar een mens ben.

Vooral denk ik aan de waardevolle wandelingen en gesprekken over zin en waanzin, over leven en overleven, over normaal zijn en anders zijn. Natuurlijk denk ik ook aan de discussies die ik voerde. Met de mensen naast me op de bank. En de stemmen in mijn hoofd. Ik denk aan de mensen die ik heb leren kennen en waarderen. Ik denk aan de vragen die ze stelden. Die ze blijven stellen. Ik denk aan de klik die ik met ze heb. Ik denk aan hun warme woorden die me zo goed doen.

Ik denk aan de kracht die al deze ervaringen mij hebben gegeven en me hebben gemaakt tot wie ik ben. Dat ik meer ben dan mijn functiebeperkingen. Ik ben een volwaardig mens, ondanks of juist dankzij hoe ik ben, functioneer en werk. Ik ben niet minder dan anderen omdat mijn brein soms anders werkt. Ik ben niet minder omdat ik nu en dan net iets meer hulp en ondersteuning nodig heb.

Laten we niet vergeten dat dit voor iedereen met een functiebeperking geldt. Op 3 december is het jaarlijks International Day of Persons with Disabilities en ik vind dat reden om te laten zien dat wij net zo mens zijn als jij, de buurvrouw, het kassameisje, de minister-president, buschauffeur, professor, collega, arts, baas en nog zoveel meer. Laten we niet stoppen met naar elkaar omkijken en zorgen dat iedereen mee mag doen in het leven. Elke dag.

Dear reader,

My name is Maartje van Diepenbeek and I am a disabled and resilient health student. Formally, I’m a student at Maastricht University for a decade, since 2012. Also, I’m a lover, a dog-mom, a friend, a daughter, a godmother, a caregiver and a human being with blond hair, scarred skin, a wounded soul and a million other things that I would like to keep private. You could argue that I could choose to not share my story with you today, since it could put me in a very vulnerable position in life and since I’m disabled you would not want me to take any more risks to keep me safe, on the right track or any other argument anyone could think of​. Precisely, because of that argument I will share my unapologetic story with you wholeheartedly. 

I am honored to share my story in the name of the disabled community at UM, the UnliMited network.  At this moment, there are 13 persons who wrote a story before me to answer the question: “How has your disability affected your study or work?” I would strongly advise you to read how diverse everyone has answered this question.  

To me this question is way more triggering than I would like to admit, since my disabilities affected every single aspect of my life, they still do and will for always and forever, if your paradigm won’t change. Statistically, chances are high that you like numbers, so I would like to share some important data with you: 190 million persons in the world are disabled. Disabilities are not something I can choose to not let affect me, no matter how much positive words I would use or positive experiences I would experience. 

In academia, people really like to conceptualize everything about the human experience, and I would really like to conceptualize that for you . When we talk about experts, we often think about someone with a professional career in academia, a Doctor of Science or someone who can use words in a professional manner that will sound appealing and convincing, to a certain audience. In academia, everyone seems to be an expert of something or about someone and I often think this is special. It’s unexperienced to believe that people in academia have all the answers to your questions or solutions for all your problems. I hate to break it to you; academia does not have all the answers and academics are not experts about everything or anyone. The only expert you should ever wholeheartedly trust is yourself and most answers are not questioning the right experts you take advise from. 

Before you feel triggered by my words, I would kindly advise you to take a deep breath, exercise or bite some apples. It’s a scientific fact that that is healthy behavior, so I challenge you to adapt to this standard and self-manage this for me in the face of social, physical, and emotional defeat. Also, I will not use any references in this letter from any academic expert since this is my story. As far as I know and gave permission for, the experts who ever tried to conceptualize my health, my diagnoses, my pathology, my rights, my worth and my disabilities, never told you my name or did they? 

In the meantime, I am unpacking all the emotions I feel regarding this question and the fact that it’s written in past tense is bothering me. If you would know me, you would not expect that I ever would feel at a loss for words. I mean, I’ve had chronic diarrhea for years literally and verbally since the day I was able to speak. Also, I crave to explore new things and to have diverse options, but it’s hard for me to prioritize which black box to unpack first and how to analyze the slices in front of me, since the amount of pizza slices my stomach could fit, is limited. Furthermore, I really love karaoke and it’s one of the things I miss most since the covid pandemic. “I was here” from Beyonce, is my favorite song to sing.

Another fact about me, is that one year and one week ago, a growth was found in my larynx aka voice box. Ironically this is the organ, in the top of a human neck involved in breathing, producing sound, and protecting the trachea against food aspiration. I was made aware of the presence of this tumor minutes after I woke up from a bariatric surgery, a surgery I choose to have after losing any form of perceived control after years with living with chronic fatigue and multimorbidity’s. I choose this surgery, because it gave me a sense of control and it was a medical risk, I was willing to take. I could not see how my life would have had any worth, when I would experience that chronic disabling fatigue any second longer. This fatigue drained me in ways, which words can’t make you understand, and I can confidently say, that it made me an expert of being extremely tired. The story that followed regarding the diagnosis of my voice-box-tumor, felt like a funny dream. I mean, it felt like a déjà vu for my wounded soul and it’s still making it hard for me, to really dream and trust myself at times. 

When I was 11 years old an experienced GP sliced a growth open next to my vulva, without me understanding what choice I had in the matter back then for my undiagnosed hidradenitis suppurativa. When I was 12, a teacher told me that if I was not so distractable, chatty and dreamy all the time, my grades would be better and if I “just did it” I would reach my goals at a time I was still undiagnosed with ADHD. When I was 13, someone told me my lips looked like I stole them from a black girl, and I honestly didn’t know what that meant, how racist this was, or why someone would think that was funny. When I was 14, I was told to not shave, become fat, smoke, or do anything potentially unhealthy, since this was according to experts, the root cause of the symptoms I was suffering from, for which there is until today no empirical evidence for or hopeful treatment option for insight. When I was 15, I was told to need an extreme make-over for my presence, since this was a strategy my male physics teacher found appropriate to silence my chatter, to silence my voice. When I was 16, a male English teacher asked me if I forgot my homework in my tent, since my parents own a tourism business, a camping, after needing to sell their farm when I was 6 years old to move to another province in the Netherlands, since it became unprofitable for our family as a unintended consequence of governmental regulations at the time.  When I was 17, I yelled aggressively at a teacher for the first and last time in my life, when I found out he lied to me about the allocation of charity money that was meant for educational purposes in Tanzania, a charity organization that until today strives to teach Global Citizenship to high school scholars. 

When I was 18, a registered psychologist told me not to suffer from depression, since he desired to talk about his daughter who unintentionally died in a train accident, and I should be grateful to be alive. When I was 19, it was the first time I witnessed someone die all alone, without family and without being fully conscious of his own presence, when I was a student nurse in elderly care for demented individuals.  When I was 20, I was told that studying to become a nurse, was only an option if I was able to physically do the internships, which was not something I could do anymore at that time, because of my disabilities. When I was 21, I was told by a nurse that my new diagnosis for an auto-immune disorder was just very uncertain, I could be symptomless for years, but it could also put me in the hospital tomorrow. When I was 22, a guy told me he wanted to have sex with me because he wanted to experience what it was like to have sex with a fat girl, and I focused on the positive unintended consequences, since it was one my biggest fear that HS would make it impossible for me to have and enjoy sex in the future. When I was 23, I wanted to kill myself and be forgotten, I wanted my pain to end and to not be a burden in a disenabled world. When I was 24, I came back to study at UM after a wellbeing sabbatical, or at least I really tried my best with the help of experts who respected me as an equal. When I was 25, I was told that maybe I should consider quitting studying in academia or just try harder, listen to the experts, and look for other directions that would be more fitting for my disabled potential. When I was 26, a medical expert who educated me with his dominant words, behavior, and his privileged position, to distrust the entire health system and to instead to just trust his professional experienced-based advice, since I was the patient, and he was the expert who really cared for my wellbeing and he even won one of the most respected prices UM has to offer. When I was 27, I became a dog-mom of a Golden English Cocker Spaniel named Teddie, who is until today a mirror for my emotional state without ever getting the education for it yet. When I was 28, I recovered from my chronic fatigue because of an unintended medical misunderstood consequence, that made it possible for me to clean house and to start recovering from my internalized ableism. 

When I became 29 years old last month, I realized that the majority of the UM community has zero clue what it means to be a disabled student at UM and how much education truly means for students like me. What it means for my future, my entire human life and what it means for YOU. Since it's is my 10th year anniversary at UM, and today DUO granted me 5 years “extra” to graduate with a highly above average student debt AND I wanted to let you know that I would like to invite you to my hybrid graduation party that will take place somewhere in the future. 

I dream that the admiring work of Wynand Wijnen will evolve, that education at UM will be accessible for disabled students off-campus when needed and it’s my dream to become a psychologist and empowering leader for our health systems in society to improve. I hope I can travel the world and live in ways that make my heart feel whole again. I hope you know that you have the power to make someone feel seen today, to feel, heard and to speak up. I hope that you don’t feel sorry for me or feel bad for something you ever did or didn’t do. Today, I forgive myself and I forgive you and I hope you understand why. 

“Nihil De Nobis, Sine Nobis”

Liefs,

Maartje

*I hereby give you permission to share my story with persons who you think would like to read this, and feel free to forward it with your own story or tell me your story if you want. And you can keep it more private too, whatever feels right for YOU. I hope that you have the means to find the right audience to share your story with, just like an Indian Prince reminded me off in an extracurricular course I followed at UM. 

Happy holidays <3