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So You Just Became Disabled: How to Live (it's not the end of the world!)

VaporwaveHistorian

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This is for physical disabilities as that's my experience. If anyone wants to add mental & developmental disabilities and such, I encourage you to go ahead!


Let me start by saying that, as of writing this, there are 3791 members in this forum. If you think that in those nearly four thousand people no one will become disabled at some point in their life and everyone will stay healthy, you are very wrong.

I decided to write this because you might be the lucky person who will have their life drastically changed, yadda yadda. Plus, I want people to stop being afraid of being disabled. I am writing a kind of guide that I wish I could read when I got crippled. Here we go.


You might be perfectly healthy. You might have a family history of disability and think that you have avoided it so far. You might have some minor problems. You might have the onset of a disability. Hell, maybe your doctor told you that you will have to use a wheelchair at some point in your life, or you are becoming blind. Maybe you found yourself in an accident and there is this fatigue, chronic pain & injuries, and a limp that just won't go away. Maybe everything went to hell without a diagnosis and you just can't heal. This is for everyone!


1. Don't be afraid. Any kind of disability is manageable, trust me. I have many, many disabled friends. We are all different and we all have our own rhythm. You'll really get used to it, things will become bearable. Don't be afraid of the possibility of becoming disabled, either. As I've said, you are far stronger. Humans have evolved to adapt. It's not the strongest that survives, it's the one who can adapt. And let me tell ya, I've come to a point where I can effectively adapt faster to any environment than any able-bodied person I know of.

2. Know your limits. I know it's hard. You were an adventurous person and now you have merely a quarter of the energy you once had. You want to do more, you want to exceed your limits. But trust me on that, it'll only make things worse. If you have a chronic illness, especially chronic pain and fatigue, you'll find that you are stealing the energy of the next day and more. You'll wake up tired the next day if you tire yourself so much today. You'll ruin an entire week if you do one more activity than you can handle. I know that it's frustrating, but you truly will get used to it.

3. Fuck shame. Look, I know that you feel shame at first. You want to apologize and say "I'm sorry I am disabled, I cannot be as effective as you are"... Fuck that shit, alright? You are never worth less than others. You handle this world every single day. You don't make the lives of people harder. If they think so, they can fuck off. If they stare, they can fuck off. You don't have to bow down to the able-bodied just because they are creatures who haven't lost their health. Remember, every able-bodied is just not disabled yet.

4. Fuck what people say. Some will tell you that you will miraculously heal. Some won't believe that you are disabled. Some will believe that you are lying. Fuck them all. Only you inhabit this body, not them. Only you know how hard shit is. Those fuckers start crying the third day they have a sickness and don't heal. You live sickly every single day, you are certainly more experienced in this shit. Plus, there are tons of mfs who believe that yoga and mindfulness will heal it all. Fuck that as well.


As I stated before, there are many ways to become disabled.

I'll cover mobility disabilities first:

Let's say that it's a slow shift. You wake up every day and there is something wrong. Something is getting worse. You used to walk a lot, now your abilities have suddenly decreased. A few weeks to a month, you cannot walk at all without losing balance. You went to a doc or something, got diagnosed or didn't, but the problem is still there.

Or, it was sudden. You don't want to get up, you don't want to look in the mirror, you can barely get to the fucking bathroom to start the day.

What do you do?

Get a fucking cane. Or a fucking forearm crutch. Or a walker. Or a wheelchair. Or all of them.

Look, even if you have pain in your legs, a cane helps a lot. You find yourself suddenly able to walk again. You want to walk, you want to explore the world again. Double crutches also work very well. Walkers and wheelchairs are the best in terms of preventing pain and exhaustion, but there might be inaccessible places.

You might feel shame at first. People looking at you, staring at you, that kind of shit. Fuck them. Decorate your mobility aids, nail polish is a good material to use. My forearm crutch has some profanities on it, haha. Go wild. Go punk, even. If you want, you can stare back at people and laugh at how they get embarrassed. It will get better. You will start being proud of yourself. Plus, mobility aids are extremely fashionable. I put Christmas decorations on my walker, the lights and everything. Try it.

Don't worry about being messy. You will find a rhythm. When I first became disabled, I was staying in a dorm room of 4 people. In just a few weeks, my part of the room went from organized to an abandoned trench recaptured and lost thrice. I would sleep in my bed, crawl to the fridge just a few feet away, take the food and eat it in the bed, put the plate on the floor and sleep, wake up and take the computer to the bed, do my assignments on it, put the computer on the floor and sleep again. That was it. That was my life for a few months. Then, I managed to get used to get around in the room enough to stuff my trash into a bin and my clothes into the drawers.

Use things to your advantage. You know those office chairs? The ones that roll around? Use those. They can get anywhere. People in the dorms saw me getting through corridors with that shit, cooking in the kitchen while rolling around with that, washing the dishes and rolling back to the room, even going to the bathroom. Like a wheelchair, haha. Also, you can put a basket on it and use it like a rollator if you need to carry stuff. Same method, shopping carts can work as rollators -they carry hell lot of your weight.

Shower chairs help a lot. Seriously. Even if you can stand, just use it. It prevents fainting, too. If you have blood sugar/pressure issues, that one's for you.

Hold on to the walls and tables around the house to move faster. It's a nice tactic. It might look like you have been shot three times and trying to stumble to safety, but it's so damn fast when you know the environment. Just boost yourself by pushing yourself forward. Also, a lot of people who use mobility aids outside of their houses don't need them indoors. It's because you know your home, you know how to use your energy and how to navigate. I sometimes use my cane inside the house, but mostly I just trust the walls and tables to keep my balance.

Get a basket added to your walker. Or a bag attached. It makes everything so much easier. You can use it while going to shopping. Or, you can put potted plants in the baskets. Wherever I went, it would smell like lavender... because I would be carrying a huge lavender plant. People start smiling once they notice it, haha.

I started with mobility ones because they require a mobility aid most of the time, and that's a huge step. Now, I'll cover some of the other ones.

Nervous system problems or muscle problems can lead to weakness.

It's a horrible feeling when you reach for something, try to hold it, and drop it. I know that. You'll find yourself reaching for a glass of water and boom, now you have to clear the kitchen floor from pieces of broken glass. Or, you'll try to hold a pencil and fail. You will have mental breakdowns because you just wanted to eat cereal but you couldn't hold a fucking spoon.

Believe me, it happens. It's more common than you think. That's why people always come up with solutions :). First of all, use a water bottle. It's easier to hold. You will have less trouble lifting it if it's a small bottle, too. You can refill it later. Use mugs for anything else. If it has a handle, you are less likely to drop it. Don't bring things up too high. Hold stuff with two hands. Hold doors open with your feet, not your hands (it prevents pain and accidental slipping of hand). Get a pencil grip for your pens and pencils, they are very cheap so you can buy a bunch. Hell, if you can sew even just a bit, I'll give you a little trick. How to make a homemade gripping aid (this shit saved my life multiple times and still does).

I made it from a cleaning towel. It's odd walking around with a flowery towel on my hands, but I can fully wrap the bandages around it to cover it + use it as a compression glove for chronic pain. It works very well. Here's the guide:

1: Cut a cleaning towel and stitch it to make a glove shape. Yeah, I didn't know how to sew back then, but it still worked. I basically borrowed my roommate's sewing kit for this.
design 1.png
design 2.png


2: On a horizontal line in the front of the glove, stitch the end of a long bandage. Let the other end dangle.
design 3.png
design 4.png


3: Stitch the metal securing part that comes with the bandages to the free end of the bandage. Now, you can wrap the bandage around your hand while holding things to make an adjustable gripping aid. When you're not holding anything, you can still wrap it around the glove to use it as a compression glove for pain. It's so damn strong, you can hold anything.
design 6.png
design 5.png


Get plastic kitchen utensils. It's a lot lighter. Makes a difference.

Grab your pencils and kitchen utensils with your fist. Fuck delicate shit, right? We are working for efficiency. Look, there's a thing. Able-bodied people will still care about the looks when they design stuff for disabled people. They will make shit fancy. When disabled people design stuff for themselves, though, you'll find the most absurd and hella efficient stuff. It will work, because that's how we stay alive.

Also, typing is more than often easier than holding a pencil. At least that's how it is for me. I ask my professors if I can type my exams on my computer instead of writing by hand. With two bandaged hands + gripping aids and a fucked-up pencil with a grip, they of course say yes.

Chronic pain people:

Everything above applies depending on the location of your pain. Don't overexert yourself, give yourself breaks often. Don't use too many painkillers if they don't work -they don't suddenly start working one day, I've tried that for over a year. You really get used to the pain at some point, believe me. Some days will be harder than others, but you will find your rhythm as I say.

Weather can affect your pain. Some nights you might find yourself unable to sleep. At first, I thought it would pass so I would simply lie in the bad the whole night until I'd see the sun. Now, I know my body. I know that it gets worse in winter, humid weather. I lie down. If I don't fall asleep within an hour, I stay awake until 6 AM studying. I know that in the morning, my pain will ease enough to let me sleep. I sleep for 2 hours, then go to classes. After my class, I sleep on the couch in the corridor while waiting for my next class. As I have said, you really get used to it. Just don't forget to find time to take naps, eat well, and drink water.

Talk to your psychiatrist. The only painkiller that helped a bit was prescribed by a psychiatrist to me. It, however, made my chronic fatigue worse, which...

Chronic fatigue:

You are simply unable to rest. I would sleep for 16 hours a day and still be unable to stay the fuck awake during the day. I had times when I collapsed while I was actively trying to eat. I slept on my notebook during classes. I never got to rest.

Here's the thing- take naps. I know that it feels like a never-ending loop, but naps are better than trying to stay awake by pinching yourself.

Use a mobility aid, too. You are exhausting yourself by putting extra effort into things. Chances are you actually have another chronic illness or weakness kind of disability that makes it harder to use your muscles to full function, making everything harder.

You get used to it, believe me. Sleeping between classes was my new habit. Even my dormmates got used to it at some point.

Now, the ones people fear the most.

As I said, don't fear. Humans can adapt to things perfectly.

Deafness:

You're losing your hearing? It's okay, believe me. I know that it's hard to accept at first. But hey, this world isn't built on hearing.

I'm not deaf, but half of my family has deafness either fully or to some level. My cousin is so damn chill. His hearing aids run out of batteries during dinner and he sometimes chooses not to replace it, enjoying the silence. Or, I am very sure my father sometimes "doesn't hear" things when he doesn't want to. Hah, you'll find a lot of experiences.

Talk to a doctor for the best path to follow. You can learn sign language, get better at lip reading, ask people to speak a bit louder, or use a hearing aid. Doctors are the key here. Also, connect with the deaf community! They have a lot of tricks and stuff to offer. A whole other subculture.

Blindness:

People fear this the most. Don't.

I went to the kitchen, put on a blindfold, and cooked breakfast perfectly. I thought it was beginner's luck, then I did it again. And again. It's actually pretty easy. Your muscle memory registers everything very well, you simply don't notice it. Try it once. Listen to the sound of the stove turning on properly. Know the texture difference between sugar and flour. Break eggs and check the bowl softly with a spoon or your fingers for any shell pieces just in case. Touch the surface of the cooking omelette to feel if it's done or not. It's actually very easy to get used to.

Get a braille keyboard cover for your computer. It's easy to learn. Learn to use a screen reader, too. You'll handle it perfectly. Sometimes, when I had a migraine, I would turn the screen reader on and close my eyes while typing on the computer. It reads every letter you type, then the word.

Not everyone who is blind is completely unable to see. Some people have tunnel vision, some have partial loss etc. If you're like that, please don't underestimate it. A lot of people just say "Eh, I don't need a white cane". Look, white canes make life easier. You won't have to focus all the time on the obstacles on the road with your limited vision. Learn to use a white cane and you're good to go!

I'll add to this if I remember any other tips for any disabilities.


Remember:

It's okay to mourn for your health. I mourned for the person I was every single day for so long. But then, I simply let it go. Sometimes I still think about the times I had no pain. Hell, sometimes the wind in my hair makes me want to run. I can't. I mourn for it... until I realize that I don't remember how it felt like. Running. No pain. You forget your healthy times, and it's not a bad thing. It's relieving. It no longer drives you crazy.

Some people find it very helpful to acknowledge their disability as an identity. There is an entire subculture for it, actually. I was seriously ashamed of myself until I discovered it. It's called "cripple punk".

Sick Mentally Ill GIF by Unpopular Cartoonist


Here, I'll list you the basic rules as the founder of the movement, Tyler, wrote them out:

-cripple punk is exclusively by the physically disabled for the physically disabled

-cripple punk is about solidarity & is open to all physically disabled people

-cripple punk rejects pity, inspiration porn, & all other forms of ableism

-cripple punk rejects the "good cripple" mythos. cripple punk is here for the bitter cripple, the uninspirational cripple, the smoking cripple, the drinking cripple, the addict cripple, the cripple who hasn't "tried everything"

-cripple punk fights internalized ableism & fully supports those struggling with it

-cripple punk respects intersections of race, culture, gender, sexual/romantic orientation, size, intersex status, mental illness/neuroatypical status, survivor status, etc.

-cripple punk recognizes that there is no one universal disabled experience

-cripple punk does not pander to the able-bodied.



Here it is. Good to go. Sorry for the typos, it's late as fuck. You can write below if you need any tips or anything for yourself or a disabled friend or a relative or anything. Maybe you can share a few tips.

Godspeed!

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RisingThumb

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In all honesty, some disabilities like deafness come with their benefits and negatives. I'll cover them for my case(Profoundly deaf in both ears, cochlear implant in left, nothing in right) from birth

Benefits:
- Technological. Bluetooth, can listen to metal music AS LOUD AS YOU WANT IT, from the output as pure as can be.
- Can choose to turn it off when you want
- Different "modes". Hearing loop, bluetooth, volume adjustment, background noise cancellation etc
- "FM Systems" where you can connect up to the FM system and hear by a passable microphone
- Can choose to sleep with it on or off. With it off is a better experience, just don't be in a place that can catch fire or whatever
- Various welfare benefits you can apply for that don't check whether you have a Job(more money from the Government isn't bad right?)
- Can choose to not hear annoying noises(*ahem* asshole lawnmowing the grass outside right as I finish work and want to wind down for the night)
- Lip reading lets you cheat in some social situations(there was a period where I had to go purely on lip reading for about 1-3 months right after my Cochlear Implant Surgery). Most people have this instinctively(Compare the lip pattern of something distinct like "Fuck" compared to "Tuck". The F and V sounds are really distinctive. A bit of reading into the phonetics for your language will help you "hear")

Negatives:
- Big chunky thing attached to your head (cancelled out by being a long hair chad )
- Magnet in your head
- Regular alarm clocks don't work. Need vibrating ones
- Will probably not hear the Carbon Monoxide alarm blaring off at 2AM
- Can only hear from the left. In Bri'ish cars where front passenger seat is on the left this is annoying. If you drive it's probably more convenient.
- Fundamentally tied to electricity(Batteries tend to last 12 hours, and after need recharging. If used for a long time it can be as bad as 6 hours)
- Pretty difficult to learn music, doubly so since some people who previously had hearing think Cochlear implants make everything sound Robotic
- Music using both sides of a headset or shitty videos doing that are pretty awful
- Musics with lyrics are indecipherable(but most music with lyrics is done tastelessly anyway since their creators don't know how to do lyrics that can be heard that work well with the music)

And a neutral case. Since it's from birth, I never heard music in it's "correct" form. I imagine some people would go insane if their quality of music changed overnight, but it means I've never really "lost" anything. Additionally deaf people have their own history and culture that the hearing people tread on to its detriment- but that's only if you care for it(I don't particularly, but I don't know other deaf people)

On a different note, the MOST IMPORTANT THING YOU FORGOT TO MENTION FOR NEWLY DISABLED PEOPLE:

Make sure to check your local area for relevant welfare/benefits related to your disability that you're eligible for. It's very much a use it or lose it, and if the people giving that money out don't have people taking it, it's harder to justify keeping it available as it doesn't seem to have a benefit to people. Welfare and benefits budget cuts and related. This can go so far as transport, as buses and trains often offer discounts for the disabled too. Some workplaces with too much money to burn have a diversity quota, and your disability might count for something in those. Just be mindful, places without much money to burn or who are careful not to let people abuse work benefits will toss your CV. You're also literally a dumbass if you're gonna make a moral argument against this since the Government already takes your money by force by taxes. It's also probably much less likely but also check if your workplace/school(Both, my 6th form and my University had this available) has any benefits for disabled people. The money from this isn't trivial, you can usually get a couple thousand a year extra on top of your regular taxed salary.

There's just no reason to ignore it, since it's pretty much universal. Thanks for coming to my TED Talk
 
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