THE INVISIBLE PRICE OF ACCOMMODATION — Renata Jurkevythz

Every accommodation provided for a person with a disability, be it physical or mental, visible or invisible, is usually perceived as something they are getting “for free”. Something is being facilitated for them in a way it wouldn’t for a person without said disability. Supposedly, it is understood that it is not an advantage, but a way to make things less difficult, or simply possible, for someone already struggling with things that are taken for granted by others. Supposedly, of course. Therein lies the first problem disabled people face and that also originates the second one, the title of this article.

Intentionally or not, every accommodation will end up being seen as a sort of advantage by those who are not entitled to it. A ramp for a person in a wheelchair is easier to be agreed upon by everyone because you clearly see the need for it and it is not an actual benefit if compared with the regular pavement. But when it is the first place in a line, or maybe a special, more comfortable seat, or the ability to bring a support animal along in places where pets are not allowed… Well, then people’s reactions will certainly change. These are a type of advantage in comparison to the rules other people must follow, so you have to prove your entitlement. People will want to make sure you are indeed in need of that support, and not just fooling everyone to get better treatment. This exact feeling created an invisible and very expensive currency disabled people need to trade for these services and accommodations. Let’s call it the victim currency.

This is not a physical currency, and does not seem to be very valuable to those demanding it, but it is both invaluable and dangerous to be used for those who need to trade with it. So, what would be a “victim” currency? It is mostly the person’s ability to convey their status as a permanent victim of the universe. A victim needs to be somebody who is always miserable, for starters. They cannot laugh, have fun, or even be optimistic. They need to show constant displeasure in life and make everyone feel sorry for them, at all times. They also cannot have any accomplishments in life. A victim is a person who only experiences suffering and has no ability to produce anything worthwhile. If they manage to produce something, it needs to be something either trivial or way below what their peers produce. Preferably, they need to show how much they suffered to be able to do something so basic to achieve for others.

A victim could not, under any circumstances, achieve anything truly remarkable or that would represent a challenge to “non-victims”. If you can accomplish one thing, you can accomplish everything, so you are not in need of assistance. Being optimistic is also a grave fault. If you believe there is a better tomorrow, then the power of believing should make you automatically able to face anything, right? So you have to go through life without any support to commit to your optimism. Being happy then… What? You must be crazy if you have anything bad going on in your life and dare to laugh, make a joke, stay upbeat!! Victims are not happy; if you show any signs of it you are instantly well, everything is just perfect in your life. You are even mocking others with your happiness…

So yeah, it is basically the price of your self-worth, motivation, resilience and ability to fight for a better future or to simply stand for being alive. As I said previously, an invaluable price, and most importantly, a very dangerous one. The biggest problem is that all those things I just mentioned are crucial to anyone struggling with a disability. To live in pain, be it physical or mental, to never feel like you belong or feel that things are just too hard to make them worth it is our everyday life. Being disabled in any way is not easy. If you are not able to find happiness in life’s smaller things or feel optimistic, believing in a better tomorrow, or just feel accomplished by doing something special you know you are good at, you might not think there is a reason to keep living. This is serious business. You simply cannot take that away from somebody for a first place in a line, or to give them a special seat, or anything they need as a disabled person to be able to do what others do with ease. It is beyond cruel. People do this all the time, many times without realizing it, and it has an enormous impact on the lives of those who need support.

It goes without saying that the more invisible your disability, the more you need to pay. People can’t see your problem? Pay double. Is it a mental disability? Oh, you will need to pay at least four times. There is not a precise physical test to confirm mental issues, so you will need to work really hard to prove you are not just trying to get it easier.

I, myself chose to give up not even accommodations, but simple recognition and an eventual kind gesture because I realized we have to pay the price even for that. I rarely mention my autism to someone, and I don’t even intend to do it in a professional environment, because the moment I decide to do it, people will immediately think I’m either less capable than they are, or, that I’m lying and just seeking attention. I also put up with a lot of stimuli that could easily be toned down by people around me because if I mention anything I will be called spoilt or worse, and I’ll only be able to have people changing anything if I pay the victim price. I am not willing to, though. Even when I really need them. Even if I have an awful wave of meltdowns after coming home from a full day of masking and putting up with many hard things that are easy for others.

Building up happy moments, keeping my optimism and recognizing things I am good at and investing my time and (little) energy in them are the thing that keep me alive. I am absolutely not willing to give them up in any way. My heart sinks for those who cannot afford to avoid the need for accommodations. Those who will have to pay the price, whether they like it or not, because they simply cannot live without support. The children who grow up under this currency weight, making it so hard for them to be fulfilled adults and to be able to find something they excel at and that might make them happy in the future, because they are conditioned to play the victim part from an early age and just don’t know how to do it differently later on. So many good people get lost because of the cruel weight of this currency and feeling even more miserable than what their conditions make them feel, because they are not allowed healing tools. Again, it is a very, very cruel trade-off.

We need to make others aware of this invisible price and its negative impact in people’s lives. There are many good people out there fighting the good fight, trying to create awareness about this problem, about showing how important self-care, resilience and emotional support are for people struggling with any physical and mental conditions. Let’s join them helping to break the victim stigma that surrounds disability. I believe in a better tomorrow, where people could show empathy and kindness to each other and disabled people wouldn’t need to feel the need to put themselves down in order to get the support they need. I believe because I have to. It is the pact I made with myself, to fight for a better future believing it is sure to come. It heals me, keeps me going. And nobody is going to take that away from me.

About Renata Jurkevythz

I’m a 36 years old recently diagnosed Aspie. Married to a neurotypical for 15 years. Mother of three – a 10 year old Aspie girl, 4 year old classic autistic boy and a little baby boy. I found out about my neurology last year after my son was diagnosed and I started to dig deep into autism. Then my daughter’s diagnosis followed. We are a unique, happy bunch and try to make the best of what we have. We see different brains as just different, all with positives and negatives – there isn’t a wrong one! We are from Brazil but recently moved to Germany. My special interests are writing, learning languages, games and movies. I also love forests – they bring me peace. Things that make me instantly happy are the sound of singing birds (specially Seagulls) and children laughing.

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