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Prilagojeni neprilagojenemu / Adjusted to unadjustable

Lepotna industrija mi kot ženski sporoča, da bom dovolj cenjena, privlačna in ženstvena takrat, ko bom dosegla lepotne standardne katere dosega le peščica, oziroma če sem bolj natančna in posežem v statistiko le 1% ljudi. Medtem pa mi neka druga industrija, kot ženski s posebnimi potrebami oziroma invalidni osebi sporoča, da nisem dovolj dobra in se moram spremeniti.

Živimo v svetu, ki je narejen za povprečne, večino in to nisem jaz. Dokaj kmalu sem ugotovila, da bom morala odraščati in živeti v svetu, kateri ni narejen zame in jaz sem napaka v sistemu popolnih, hodečih, prosto se gibajočih ljudi in to mi družba vsakodnevno kaže na različne, za nekoga “popolnega” vsakdanje načine.

“Popravite me nisem dovolj dobra za družbo.”

Na vsakem sestanku, konferenci, kateremkoli dogodku, časopisu ali socialnem omrežju, ki je povezano z gibalno oviranostjo in invalidnostjo, se poraja tematika “iskanje zdravila”. Popravite me, nisem dovolj dobra za družbo. Popravite mojo drugačnost. V svetu prevladuje mišljenje, da gledamo na gibalno oviranost, kot na nekaj, kar mora biti popravljeno. Invalidna oseba je problem in zato jo moramo popraviti, pozdraviti, narediti “povprečno”.

Živim z redko genetsko boleznijo, za katero je zdravilo še daleč stran. Zdravniki, mediji, mi pravijo da mi bodo olajšali življenje z zdravilom za katerega se porablja milijone denarja. Ampak, ko pomislim, kaj mi ne bi življenja olajšali že s preprosto klančino do objekta, z avtobusom ali vlakom dostopnim za voziček, z asistenco, z vrati, ki se samodejno odpirajo in še bi lahko naštevala, ki bi bili verjetno veliko cenejši od mojega “popravila”.

Ne. Rajši bi človeško, živo bitje s čustvi označili kot napako in ga “popravili”, kot pa namestili kakšen pripomoček in uredili dostop do vsakodnevnih stvari, poslopji.

“Kaj, če bi bil…”

Živim v svetu, ki ni zgrajen oziroma prilagojen zame. Ampak kaj, kaj če bi bil? Kaj če bi lahko odšla na banko brez, da bi prej klicala, če je urejen dostop za vozičke, če bi lahko odšla na zabavo brez, da bi en teden prej kontaktirala organizatorje in do zadnjega trenutka čakala na odgovor in bi me na koncu poslali čez nek stranski vhod, čez katerega drugače prenašajo zaboje pijače, kaj če bi lahko odšla v drug kraj brez, da bi morala en teden prej organizirati prevoze, kaj če bi se lahko peljala po pločniku in bi me na koncu pločnika čakala urejena klančina in ne deset centimeterski rob, kot se mi je to zgodilo že tisočkrat? Kaj če bi bil…?

“Nisem pokvarjena in ne rabim popravila, družba ga!”

 

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The beauty industry, as a woman tells me that I will be good enough, attractive and faminine when I reach the beauty standards which only few people reach, or if I’m more precise, in statistics only 1% people reach this »perfect body«. In the meantime some other industry, as a woman with special needs or a disabled person tells me that I’m not good enough and I have to change.

We live in a world made for the average, and that’s not me. I soon realized that I would have to grow up and live in a world that is not made for me, and I’m a mistake in the system of perfect, walking, free moving people, and this is what society is telling me on a daily basis that is for someone “perfect” everyday ways.

“Fix me, I am not good enough for society.”

At every meeting, conference, any event, newspaper or social network related to disability the topic of “search for medicine” is number one. Fix me, I’m not good enough for society. Fix my difference. The view that dominates in the world is that we are looking at diability, as something that needs to be fixed.  A disabled person is a problem and therefore we need to fix it, make it “average”.

I live with a rare genetic disease for which the medicine is still far away. Doctors, the media, say they will make my life easier with a medicine for which millions of dollars are spent. But when I think, wouldn’t you make my life easier with a simple ramp to the building, a bus or train accessible for the wheelchair, with assistance, with a door that automatically opens etc., which would probably be much cheaper than my “repair”.

No. They would rather label a human being as a mistake and “fix” him. Rather than installing some gadgets and make access to everyday things, buildings.

“What if…”

I live in a world that is not built or  adjusted for me. But what if it was? What if I could go to the bank without having to call before if there was access for the wheelchairs, if I could go to a party without having to contact the organizers one week before and wait till the last moment to get an answer and they would eventually send me over to side entrance which they use to carry containers with drinks, what if I could go to another place without having to organize my transport one week earlier, what if I could “walk” with my wheelchair on the sidewalk and a ramp would wait for me at the end and not a ten centimeter edge, as it happened to me a thousand times before? What if…?

“I’m not broken and I do not need to be fixed,  society does!”

 

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Kontakt / Contact:

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