++ I will be really clear in pointing this out; DO NOT PITY ME! This is not about boo hoo poor me but about how my life and identity have been affected of what happened to me. It's about understanding and inclusion. ++
This will be a loooong post, be warned. ;)
So today I'm going to touch on the subject of being goth and disabled, since I know there are a lot of you out there who are curious about this.
Please feel free to ask me questions about it! I'll gladly explain further and please don't be afraid that you will offend me or not being PC with certain words or stuff like that. :)
Bear in mind that these are all my own reflections and experiences and that being disabled and/or chronically ill, whether it's mental or physical, is different for everybody, so it is important to understand that there is no set in stone template on how we work. And it is also important to understand that a disabled or functionally different person is just that - a person, not their illness or diagnosis.
First, I'm going to try to explain the difference between a disability and chronic illness.
Everyone, unless you're some kind of walking miracle, has been ill one time or another whether it be a flu, cold, chicken pox or whatever like that. Those illnesses can be tough, but they pass and you're back to normal health.
When an illness is chronic, it won't pass and in many cases it will be a lifelong, unwelcome companion. Some chronic illnesses are mild and some severe. Examples on chronic illnesses can be asthma, fibromyalgia, myalgic encephalomyelitis, endometriosis, epilepsy, diabetes, HIV, bipolar disorder, schizophrenia and recurring depression.
The chronic part seems to be very hard to understand for a lot of healthy people (including medical personnel). Hence, we who are suffering from chronic illness often get questions/comments like "When are you getting better?" or a reassuring "Don't worry, I'm sure you'll be back to normal again soon."
A rule of thumb; chronic means for the rest of your life.
Some chronic illnesses are terminal, others are just a lifelong pain in the ass (sometimes literally).
Disability is not necessarily caused by an illness, but is described by
WHO as an umbrella term for a condition where the individual is restricted compared to others in society. So a disability can be for instance having lost a leg, hence having trouble walking.
Or in my case, the disability is caused by chronic illness which prevents me from living a normal life due to severe pain and crippling fatigue (and other nastiness as well).
So how does this affect my involvement in the goth subculture?
Being such a complex and diverse topic I will chop this up and disperse it over several blog posts. In this one we'll discuss the aspect of how you as a disabled goth differ from the norm in several ways, which can be problematic in certain situations.
So these are the points I'd like to bring up overall in my posts about being goth and disabled:
• How we're met by functionally abled normies and doctors.
• How we are met by others in the goth community and the impact disability has on functioning within the goth community.
• Problems with practical things when it comes to alternative looks and lifestyle. Tips that might be useful!
• Representation within the goth community.
This post will be addressing the first point; how we as disabled goths are met by functionally abled normies.
+++
First of all;
What's "wrong" with me?
I have been bestowed upon several chronic illnesses (fibromyalgia, ME) and chronic mental health problems (anxiety, manic depression, panic attacks).
I also have a diagnosis within the autism spectrum (Asperger's syndrome).
Important though, is to understand that Asperger's syndrome/autism is NOT an illness. It's a function variation (and in certain cases a disability). A great but very simplified explanation is that autism is another way that the brain is "wired". Despite the problems that it causes in for instance social interaction and everyday life, it is a part of my personality that I wouldn't ever get rid of even if I could because there are some fantastic things about it as well.
What do these illnesses do to me?
First of all, I'm in constant pain in every part of my body equipped with nerves. Everywhere, all the time. And yes it's possible so don't even go there.
This isn't what my body looks like but what it feels like. This representation isn't true for everyone with fibromyalgia, but for me it's spot on.
Then there's the fatigue due to an everlasting brain and spinal cord inflammation. It's not as easy as that we ME patients simply get "tired" in the way one might feel after a sleepless night or a tough day at work. No, this fatigue is the kind you have when you have a bad flu with high fever. And speaking of fever, I've had a fever almost every day since I got ill three years ago. This is not unusual for patients with ME, and it has a tremendous impact on one's body, and I'm bound to my bed or couch about 85% of the day.
Both the fatigue and pain makes it difficult for me to walk and stand up, and even sit up, so I usually walk with a crutch and sometimes use a wheelchair.
"Brainfog" is a term that most fibro and ME patients are intimately acquainted with. That is basically a state where you get disoriented, have issues with your memory and problems to concentrate. Your mind feels foggy and unfocused.
Those are the main things that have made my chronic illnesses into disabilities.
+++
And now, let's dive into the actual topic.
How we're met by functionally abled normies*
When it comes to goths we are usually easy to spot among the basic normie population. That's one feature that makes us unique and that is part of our subculture. Of how we express ourselves as individuals.
An eccentric, norm-breaking sense of fashion and self-expression is more often than not very important to us, and it is exhilarating going out looking exactly how you want to look, not giving a flying fuck that "normal" people aren't supposed to go grocery shopping in Victorian mourning wear topped off with a shiny PVC corset.
We all have to endure the stares and comments and whispers, which seem to be the inevitable prize to pay for being who we are and want to be.
I love looking like the spooky ghoul I am, my hair fluffed into a deathhawk, eyes lined in fierce black, peeking at people through creepy contact lenses. Until very recently the stares and whispers had stopped bothering me a long time ago and I could laugh at all weird comments.
Then came the time when I became ill, eventually got a crutch and sometimes have to use a wheelchair. And I suddenly started to feel vulnerable to people's stares and the way their judging eyes sweep over me whenever I leave the house.
When it comes to invisible illnesses/disabilities people are always suspicious, because you don't fit the mold for how you're supposed to look when you're ill/disabled. Therefore you might be faking it to get attention. And when you're goth and certainly don't fit any of their narrow-minded, etched in stone way of being, then you're definitely just an attention-seeker.
If you use a walking aid or sit in a wheelchair you get even more stares. I don't think that, in general, the person who's staring means to be rude. They just have no idea what to make of the sight of you. Still, this thought doesn't make much to make me feel less uncomfortable under their scrutiny. Knowing that they have no unkind intentions doesn't make me feel less vulnerable or less demeaned as a human being.
For me, being in a wheelchair, although it's a huge relief, is the most exposed situation I've ever been in. And in a situation like that, it's so easy to think that if you don't dress so differently, if you don't wear your hair in a mohawk or dye it pink, or or if you don't wear that studded collar people won't stare so much. They won't be as likely to even notice you. It's so tempting to just compromise your identity to avoid that uncomfortable situation.
Then there's the weirdest part about it all, that I feel a kind of social anxiety-based shame that is so hard to talk about, and even harder to explain. It's as if I feel a need to apologize for dressing and looking goth while being ill and disabled. As if I need to apologize for their inability to reconcile my appearance with the fact that I'm disabled.
And that is just fucked up beyond belief.
You can't change the behavior of every person who makes you uncomfortable by staring or whispering to their friends to look at you. That would be exhausting and take too much of the time that you could spend have fun and be happy to be outside of your house for once. So my best tip is: ignore them.
Then there's the assholes that you just can't ignore. The worst shitbags who think they're entitled to treat you how the hell they please, since, in their opinion, you are inferior because
1. You are handicapped and therefore worthless in their eyes.
2. You have only yourself to blame for being harassed when you "go out like that".
When I was healthy I had no problem confronting them. In a vulnerable state however that's a harder thing to do, because you always have to take into consideration that they may get aggressive, and that it might be harder to defend yourself whether it's verbally or physically (can someone please equip my crutch with a taser?).
If there are other people around though, being disabled might work to your advantage, because if you're in a wheelchair or have a walking aid people are more likely to come to your defense. This is of course harder if you're invisibly disabled, but don't be afraid to ask for help.
If you're invisibly ill there's another problem as well being in public places, and that is that the normies won't understand that you're ill, even if you're shaking or have trouble walking.
To them there can only be one explanation to such behavior from a person with multiple facial piercings, weird makeup and a museum's worth of tattoos painted on their bodies: you must be a junkie.
To me, who has never touched a drug (except for medication of course), that is even more offensive than stares or rude comments.
How we're met by doctors
At the doctor's office the junkie problem is even more tangible, especially if you need pain relief or stronger anti-anxiety meds. Even normies who are chronically ill have problems with getting prescription opioids and imagine then if you're visibly deviant from the norm. I don't dare to wear my usual makeup, do my hair or wear my usual clothes when visiting a doctor that I'm not already acquainted with.
I'm already behaving quite socially "weird" due to having Asperger's syndrome. For instance I have a problem with eye contact, and everybody knows people who don't make eye contact are lying, right?
And being both visually and behaviorally weird induces suspicion times two.
This might not seem as such a big deal, it's only for a short span of time after all, but that's not the point. Why should you have to pretend to be someone else in order to get the medical aid that you need and that you pay for?
These are as I said my experiences and I'd love to hear yours as well. Please leave a comment if you have any questions or anything to add! :)
Until next time!
Sincerely from the dark abyss,
Tanja
*I use the word "normie" to describe a person who isn't part of a subculture. I find it more endearing than the word mainstream.
