I Found An Extremely Dope Disability Survival Guide For Those Who Are Homebound, Bedbound, In Need Of

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

How to Get On
How to Get On
How to have a great, disabled life.

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

More Posts from Fishability and Others

1 year ago

A general cane guide for writers and artists (from a cane user, writer, and artist!)

Disclaimer: Though I have been using a cane for 6 years, I am not a doctor, nor am I by any means an expert. This guide is true to my experience, but there are as many ways to use a cane as there are cane users!

This guide will not include: White canes for blindness, crutches, walkers, or wheelchairs as I have no personal experience with these.

This is meant to be a general guide to get you started and avoid some common mishaps/misconceptions, but you absolutely should continue to do your own research outside of this guide!

[Image text] Arm bends a little. Cane height at hip joint. Many canes have adjustable height. Cane sits within the natural center of balance. Causes stress on: Triceps, upper back, wrist (pressure) fingers (grip). Helps with: Joints (lower back, hip, knee, ankle, foot), weakness, balance, pain.

The biggest recurring problem I've seen is using the cane on the wrong side. The cane goes on the opposite side of the pain! If your character has even-sided pain or needs it for balance/weakness, then use the cane in the non-dominant hand to keep the dominant hand free. Some cane users also switch sides to give their arm a rest!

A cane takes about 20% of your weight off the opposite leg. It should fit within your natural gait and become something of an extension of your body. If you need more weight off than 20%, then crutches, a walker, or a wheelchair is needed.

Putting more pressure on the cane, using it on the wrong side, or having it at the wrong height will make it less effective, and can cause long term damage to your body from improper pressure and posture. (Hugh Laurie genuinely hurt his body from years of using a cane wrong on House!)

A General Cane Guide For Writers And Artists (from A Cane User, Writer, And Artist!)

(an animated GIF of a cane matching the natural walking gait. It turns red when pressure is placed on it.)

When going up and down stairs, there is an ideal standard: You want to use the handrail and the cane at the same time, or prioritize the handrail if it's only on one side. When going up stairs you lead with your good leg and follow with the cane and hurt leg together. When going down stairs you lead with the cane, then the good leg, and THEN the leg that needs help.

Realistically though, many people don't move out of the way for cane users to access the railing, many stairs don't have railings, and many are wet, rusty, or generally not ideal to grip.

In these cases, if you have a friend nearby, holding on to them is a good idea. Or, take it one step at a time carefully if you're alone.

Now we come to a very common mistake I see... Using fashion canes for medical use!

[Image text] 4 Major Handle Shapes (significant variation and uses). Tourist/Crook/Hook. Classic shape, fashion and medical, easy to hook on things (arm, door, chair, etc), generally solid wood (stronger, heavier). Offset. Newer design, not a fashion handle, only handle for quad-bases, generally better balance, usually aluminum (light + cheap), soft handle, adjustable (rattles/clicks when swinging). Derby/Fritz/Anatomical/Contour. Classic medical shape, many fashion variants, some fashion + medical, varies in many ways, sometimes contoured to hand, comes in foldable styles, many aluminum styles, many customizable styles. Knob/Decorative. Fashion exclusive, knob shape hurts the hand after prolonged pressure (especially with designs), tend to be heavy, "sword canes" have the same issues.

(These are 4 broad shapes, but there is INCREDIBLE variation in cane handles. Research heavily what will be best for your character's specific needs!)

The handle is the contact point for all the weight you're putting on your cane, and that pressure is being put onto your hand, wrist, and shoulder. So the shape is very important for long term use!

Knob handles (and very decorative handles) are not used for medical use for this reason. It adds extra stress to the body and can damage your hand to put constant pressure onto these painful shapes.

The weight of a cane is also incredibly important, as a heavier cane will cause wear on your body much faster. When you're using it all day, it gets heavy fast! If your character struggles with weakness, then they won't want a heavy cane if they can help it!

This is also part of why sword canes aren't usually very viable for medical use (along with them usually being knob handles) is that swords are extra weight!

However, a small knife or perhaps a retractable blade hidden within the base might be viable even for weak characters.

[Image text] 4 Major base shapes (significant variation and uses). Adjustable base. Aluminum, standard modern medical, adjustable height, rubber base, wears down over time. Tripod/ quad base. If you need extra balance. Terrain attachment (varies, this is for ice). Removable, helps stop slipping on ice/snow/sand/etc, some canes have a retractable tip for ice. Classic base. Non-adjustable, custom only, modern standard still has a rubber base.

Bases have a lot of variability as well, and the modern standard is generally adjustable bases. Adjustable canes are very handy if your character regularly changes shoe height, for instance (gotta keep the height at your hip!)

Canes help on most terrain with their standard base and structure. But for some terrain, you might want a different base, or to forego the cane entirely! This article covers it pretty well.

Many cane users decorate their canes! Stickers are incredibly common, and painting canes is relatively common as well! You'll also see people replacing the standard wrist strap with a personalized one, or even adding a small charm to the ring the strap connects to. (nothing too large, or it gets annoying as the cane is swinging around everywhere)

Two canes side by side. The one on the left is painted a light pink, and the one on the right is painted black with a fire/lava pattern.

(my canes, for reference)

If your character uses a cane full time, then they might also have multiple canes that look different aesthetically to match their outfits!

When it comes to practical things outside of the cane, you reasonably only have one hand available while it's being used. Many people will hook their cane onto their arm or let it dangle on the strap (if they have one) while using their cane arm, but it's often significantly less convenient than 2 hands. But, if you need 2 hands, then it's either setting the cane down or letting it hang!

For this reason, optimizing one handed use is ideal! Keeping bags/items on the side of your free hand helps keep your items accessible.

A General Cane Guide For Writers And Artists (from A Cane User, Writer, And Artist!)

When sitting, the cane either leans against a wall or table, goes under the chair, or hooks onto the back of the chair. (It often falls when hanging off of a chair, in my experience)

When getting up, the user will either use their cane to help them balance/support as they stand, or get up and then grab their cane. This depends on what it's being used for (balance vs pain when walking, for instance!)

That's everything I can think of for now. Thank you for reading my long-but-absolutely-not-comprehensive list of things to keep in mind when writing or drawing a cane user!

Happy disability pride month! Go forth and make more characters use canes!!!


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5 months ago

I saw a post saying that stimulants for ADHD are life saving medications because they reduce car crashes and while stimulants are very important for people with ADHD they just... aren't life saving.

some medications you will die without. stimulants for ADHD are not on that list.

when other disabled people talk about life saving medication we don't just mean "very important" we mean "life saving"

I would die of organ failure caused by inflammation from lupus if I didn't have my biologic. diabetics would die of diabetic ketoacidosis without insulin. people with asthma would suffocate to death without their inhalers. that is what it means to have a life saving medication.

you can emphasize the importance of a medication without comparing it to truly life saving medications. it just comes across really insensitive when you compare lower risk of car crashes to guaranteed death without a medication

like, the shortage of stimulants is absolutely detrimental to people with ADHD but it's not comparable to a shortage of a life saving medication. without a stimulant people with ADHD would still live, without insulin diabetics would die. when stimulant prices are inflated and people can't access them it is hard but it does not equate to death. when people with life threatening autoimmune diseases can't afford their medication it does equate to death.

if you want to talk about the importance of stimulants for people with ADHD and the negative effects of the shortage that's great! but refer to the medication correctly- it's life changing, it's not life saving


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3 weeks ago

This is probably still good OpSec, but mostly I need to reblog this to cite it for a paper.

fishability - Disability Awareness, Access, and Positivity

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10 months ago

This is that giraffe bottle i was talking about in case anyone else with complex needs wants it. It's pretty cool and I'm definitely keeping it in mind for when I eventually DO need to transition to something that doesn't need to be picked up at all.

giraffebottle.com
The Giraffe Bottle line of hands-free drinking solutions allow users of all abilities to stay hydrated independently.

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5 months ago

I realized the other day that the reason I didn't watch much TV as a teenager (and why I'm only now catching up on late aughts/early teens media that I missed), is because I literally didn't understand how to use our TV. My parents got a new system, and it had three remotes with a Venn diagram of functions. If someone left the TV on an unfamiliar mode, I didn't know how to get back to where I wanted to be, so I just stopped watching TV on my own altogether.

I explained all this to my therapist, because I didn't know if this was more related to my then-unnoticed autism, or to my relationship with my parents at the time (we had issues less/unrelated to neurodivergency). She told me something interesting.

In children's autism assessments, a common test is to give them a straightforward task that they cannot reasonably perform, like opening an overtight jar. The "real" test is to see, when they realize that they cannot do it on their own, if they approach a caregiver for help. Children that do not seek help are more likely to be autistic than those that do.

This aligns with the compulsory independence I've noticed to be common in autistic adults, particularly articulated by those with lower support needs and/or who were evaluated later in life. It just genuinely does not occur to us to ask for help, to the point that we abandon many tasks that we could easily perform with minor assistance. I had assumed it was due to a shared common social trauma (ie bad experiences with asking for help in the past), but the fact that this trait is a childhood test metric hints at something deeper.

My therapist told me that the extremely pathologizing main theory is that this has something to do with theory of mind, that is doesn't occur to us that other people may have skills that we do not. I can't speak for my early childhood self, or for all autistic people, but I don't buy this. Even if I'm aware that someone else has knowledge that I do not (as with my parents understanding of our TV), asking for help still doesn't present itself as an option. Why?

My best guess, using only myself as a model, is due to the static wall of a communication barrier. I struggle a lot to make myself understood, to articulate the thing in my brain well enough that it will appear identically (or at least close enough) in somebody else's brain. I need to be actively aware of myself and my audience. I need to know the correct words, the correct sentence structure, and a close-enough tone, cadence, and body language. I need draft scripts to react to possible responses, because if I get caught too off guard, I may need several minutes to construct an appropriate response. In simple day-to-day interactions, I can get by okay. In a few very specific situations, I can excel. When given the opportunity, I can write more clearly than I am ever capable of speaking.

When I'm in a situation where I need help, I don't have many of my components of communication. I don't always know what my audience knows. I don't have sufficient vocabulary to explain what I need. I don't know what information is relevant to convey, and the order in which I should convey it. I don't often understand the degree of help I need, so I can come across inappropriately urgent or overly relaxed. I have no ability to preplan scripts because I don't even know the basic plot of the situation.

I can stumble though with one or two deficiencies, but if I'm missing too much, me and the potential helper become mutually unintelligible. I have learned the limits of what I can expect from myself, and it is conceptualized as a real and physical barrier. I am not a runner, so running a 5k tomorrow does not present itself as an option to me. In the same way, if I have subconscious knowledge that an interaction is beyond my capability, it does not present itself as an option to me. It's the minimum communication requirements that prevent me from asking for help, not anything to do with the concept of help itself.

Maybe. This is the theory of one person. I'm curious if anyone else vibes with this at all.


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11 months ago
So Many People Wouldn’t Have Asthma In The First Place If It Wasn’t For These Corporations…Shifting
So Many People Wouldn’t Have Asthma In The First Place If It Wasn’t For These Corporations…Shifting
So Many People Wouldn’t Have Asthma In The First Place If It Wasn’t For These Corporations…Shifting

So many people wouldn’t have asthma in the first place if it wasn’t for these corporations…Shifting blame from actual culprits to people with asthma (and people who can’t help but use plastic straws at that) is peak capitalism.


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3 months ago
Trump Accidentally Does A Good Thing.

Trump accidentally does a good thing.

Though I'm not sure if this will actually do anything. Sometimes I feel like his EOs are like Michael Scott declaring bankruptcy. He doesn't seem to understand what he actually has power over.

And I wonder if he knew "woke" disability activists were asking for this if he would have changed his view to spite them.

In any case, banning straws will not save the world. A tiny drop in a vast bucket of plastic waste. Fishing nets cause orders of magnitude more damage to sea life. This was mostly a PR move that some thought would be an "easy win" because they had a photo of a turtle with a straw up its nose.

Single use plastics are absolutely a huge issue. I don't like having plastic in my brain as much as the next person. But an item by item ban is a Sisyphean approach and, in this case, hurts disabled folks more than it helps turtles.


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6 months ago

i love when i see another cane user/ disabled person in public and we make that eye contact of solidarity

like yes!! you are like me!! i am like you!!


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6 months ago

A disabled woman fell on the bus I'm on and I'm literally the only one who listened to her and didn't try and pull her up when she said she wanted to sit for a second, or crowd her saying what she should do next.

Can we actually listen to disabled people maybe? This is exhausting.


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fishability - Disability Awareness, Access, and Positivity
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