Housing is a privilege.
“Fewer than 5 percent of units have the features needed to accommodate a person with moderate mobility difficulties. The percentage of wheelchair-accessible units is even smaller; less than 1 percent of all units are equipped with features that would allow a wheelchair user to live independently.”
Marriage is a privilege.
“The [SSI] monthly maximum Federal amounts for 2023 are $914 for an eligible individual, $1,371 for an eligible individual with an eligible spouse.”
Minimum wage is a privilege.
“Section 14(c) of the Fair Labor Standards Act authorizes employers, after receiving a certificate from the Wage and Hour Division, to pay special minimum wages — wages less than the Federal minimum wage — to workers who have disabilities for the work being performed.”
We still need to fight for accessibility and equity for all disabled people.
Despite the ADA, equity is still out of reach.
wheelchair users deserve a minimum of three wheelchairs to meet different needs. like, bare minimum of indoor chair, outdoor chair, and off road chair. chairs that meet different needs for transport, activity, positioning needs, energy levels, etc.
there is not "one chair" that can meet every need. wheelchair users deserve to have multiple chairs that meet specific needs, no matter how complex their seating/positioning needs. we deserve to at least have a backup if our chair breaks that is just as suited to our needs.
As a part time user of crutches (specifically smartcrutches, hence the below image), I've found a couple small products have been able to improve the quality of my experience when using them out n about n decided i might as well make a post with them on :) i might add more as i try out other things in the future and such also
The first thing is a small storage bag to attach to your crutch, you can get ones made specifically for crutches, and smart crutch even has their own branded one for the sizing of their crutches, but I got a bag intended for use on bicycles and found that it fit quite well for a fraction of the price, and likely would also do so on normal forearm crutches. I can't put too much stuff in the bag for regular usage as it would throw off my balance but it's great to have my phone and some change in to be within easy reach.
The second thing is new ferrules, specifically I got flexyfeet's ferrules which are available in a variety of sizes to fit pretty much any crutch or cane, they have shock absorption and their flexibility also means I get a lot more grip and feel safer walking with them than I did with my previously very worn down standard ferrules.
one of the biggest things I can recommend to anyone getting a new custom chair (but especially a first custom chair) is to understand all of the parts of a wheelchair and what they do. I decided to make a guide with wheelchair parts to research and places to look for information to make this process a little bit easier. additional link suggestions are welcome.
General resources:
Permobil - The Wheelchair Handbook
Motion Composites - Preparing for Your Wheelchair Evaluation: Before the Evaluation (Part 1)
Motion Composites - Preparing for Your Wheelchair Evaluation (Part 2)
1. Frame
Motion Composites - Folding vs Rigid Wheelchair Frames: How to Choose
Permobil - Manual wheelchairs: rigid and folding frames. How do you choose?
GTK - Oh what’s in a frame? Comparing Multiple Materials
Motion Composites - Wheelchairs: Carbon Fiber Versus Aluminum
2. Front frame angle
Motion Composites - Understanding the Impact of Rigid Wheelchair Front Frame Angle
Sunrise Medical - Rigid Frame Wheelchairs – Frame Angle and Inset
4. Seat dump
Permobil - Ergonomic Seating and Manual Wheelchairs
Spinlife - Wheelchair Back & Seat Angle
5. Caster size, style, and position
Motion Composites - Front Casters for Manual Wheelchairs Practical Guide
Sunrise Medical - Front Caster Position in Manual Wheelchairs
6. Caster forks
New Mobility - Caster Wheels and Forks
Sunrise Medical - Maneuverability in Manual Wheelchairs - What Fork to use?
New Mobility - Innovations: Emerging Trends in the Wheelchair Market (information about single sided forks)
7. Footplate
Motion Composites - Footrest Options to Support Function and Mobility
When Tania Talks - Active User Wheelchair Footplate Options
8. Calf strap
Spex Seating - Lower Leg Support Considerations in Wheelchair Seating
9. Seat pan
Permobil - Solid Seat Insert for Wheelchair: Taking a Closer Look at Cushion Components
10. Seat cushion
Permobil - What to Look for in Seating & Positioning Products
Permobil - How to Choose a Cushion in Long Term Care
Permobil - Cushion Geometry: Linear and Contoured
Freedom Mobility Center - Wheelchair Seat Cushions: 5 Tips for Choosing the Right One for You
Mobility Basics - Seat Cushion Rigidizer
Motion Composites - Selecting the Right Cushion for Your Wheelchair a Clinicians Guide
Motion Composites - Covering the Basics of Wheelchair and Back Support Covers
11. Seat belts
12. Clothing guards
Sherman Oaks Medical Equipment - Wheelchair Clothes Guards / Side Guards Guide
13. Arm rests
United Spinal Association - Wheelchair Armrests What Do They Really Do?
Spinlife - Wheelchair Arm Rest Choices
Motion Composites - Armrests: Getting the Support you Need
14. Back supports
Motion Composites - Solid vs Upholstery Backs
Mobility Management - How to Choose the Right Back Height for your Client
Freedom Mobility Center - Why a Solid Back is Preferred Over a Sling Back
Mobility Basics - Back Supports
Sunrise Medical - Tips for Selecting Prefabricated Wheelchair Backs
Motion Composites - Covering the Basics of Wheelchair and Back Support Covers
15. Head supports
16. Push handles
Motion Composites - Push Handles: Pushing Around
17. Wheels
Motion Composites - Rolling Along: The Importance of Rear Wheel Selection
Sunrise Medical - Comparing Wheelchair Wheel Spoke Options
Mobility Basics - Manual Wheelchair Wheels
18. Tires
New Mobility - Everything You Need to Know About Selecting the Right Wheelchair Tires
GTK - Solid versus Pneumatic Tyres
Mobility Basics - Manual Wheelchair Wheels
Motion Composites - Tire Selection: Balancing Performance and Maintenance
19. Brakes
Motion Composites - Wheel Locks: Unlocking Safety and Function
20. Push rims/Hand rims
Motion Composites - Getting a Grasp: Understanding the Impact of Hand Rims
DME Hub - Wheelchair Hand Rom Options and Factors to Consider
21. Anti-tip wheels
22. Camber
Motion Composites - Camber - Degrees of Performance
23. Center of Gravity
Motion Composites - Rear Wheel Position 101
this is gonna be a really cool frame to apply to anyone with any mental illness stiffer than light social anxiety. can't wait to be berated for having an autistic meltdown and not taking personal responsibility for how much of a fucking bummer it is for everyone around me lmfao
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.
just wanted to share the National Down Syndrome Society’s message for this year’s World Down Syndrome Day (21st March) 💛💙
A friend of mine recently broke her foot.
She's a wonderful friend. A deeply kind and considerate person. One of the first things she did after getting out of the hospital was to apologize to me.
"I'm so sorry. I had no idea."
"Hun, you're the one with the broken foot. What are you talking about?"
"I had no idea it was so hard for you all the time... There are stairs everywhere... Even in places where there's supposed to be a lift. And often the lift doesn't work. And there's pavement where my crutches keep getting stuck.... I'm so tired because walking like this isn't the same but there are no benches where I can rest....
You tried to explain and I thought I understood.... But I really had no idea. And this is what it's like for you ALL THE TIME.... I'm so so so sorry"
God how I cried.
[large text: Where to Start Your Research When Writing a Disabled Character]
So you have decided that you want to make a disabled character! Awesome. But what's next? What information should you decide on at the early phrase of making the character?
This post will only talk about the disability part of the character creation process. Obviously, a disabled character needs a personality, interests, and backstory as every other one. But by including their disability early in the process, you can actually get it to have a deeper effect on the character - disability shouldn't be their whole life, but it should impact it. That's what disabilities do.
[large text: If you don't know what disability you would want to give them in the first place;]
Start broad. Is it sensory, mobility related, cognitive, developmental, autoimmune, neurodegenerative; maybe multiple of these, or maybe something else completely? Pick one and see what disabilities it encompasses; see if anything works for your character. Or...
If you have a specific symptom or aid in mind, see what could cause them. Don't assume or guess; not every wheelchair user is vaguely paralyzed below the waist with no other symptoms, not everyone with extensive scarring got it via physical trauma. Or...
Consider which disabilities are common in real life. Cerebral palsy, muscular dystrophy, stroke, cataracts, diabetes, intellectual disability, neuropathy, multiple sclerosis, epilepsy, thyroid disorders, autism, dwarfism, arthritis, cancers, brain damage, just to name a few.
Decide what specific type of condition they will have. If you're thinking about them having albinism, will it be ocular, oculocutaneous, or one of the rare syndrome-types? If you want to give them spinal muscular atrophy, which of the many possible onsets will they have? If they have Ehlers-Danlos Syndrome, which one out of the 13 different types do they have? Is their amputation below, or above the knee (it's a major difference)? Not all conditions will have subtypes, but it's worth looking into to not be surprised later. This will help you with further research.
If you're really struggling with figuring out what exact disability would make sense for your character, you can send an ask. Just make sure that you have tried the above and put actual specifics in your ask to give us something to work with. You can also check out our "disabled character ideas" tag.
Here are some ideas for a character using crutches.
Here are some ideas for a character with a facial difference (obligatory link: what is a facial difference?).
[large text: If you already know what disability your character is going to have;]
Start by reading about the onset and cause of the condition. It could be acquired, congenital, progressive, potentially multiple of these. They could be caused by an illness, trauma, or something else entirely. Is your character a congenital amputee, or is it acquired? If acquired - how recently? Has it been a week, or 10 years? What caused them to become disabled - did they have meningitis, or was it an accident? Again, check what your options are - there are going to be more diverse than you expect.
Read about the symptoms. Do not assume or guess what they are. You will almost definitely discover something new. Example: a lot of people making a character with albinism don't realize that it has other symptoms than just lack of melanin, like nystagmus, visual impairment, and photophobia. Decide what your character experiences, to what degree, how frequently, and what do they do (or don't do) to deal with it.
Don't give your character only the most "acceptable" symptoms of their disability and ignore everything else. Example: many writers will omit the topic of incontinence in their para- and tetraplegic characters, even though it's extremely common. Don't shy away from aspects of disability that aren't romanticized.
Don't just... make them abled "because magic". If they're Deaf, don't give them some ability that will make them into an essentially hearing person. Don't give your blind character some "cheat" so that they can see, give them a cane. Don't give an amputee prosthetics that work better than meat limbs. To have a disabled character you need to have a character that's actually disabled. There's no way around it.
Think about complications your character could experience within the story. If your character wears their prosthetic a lot, they might start to experience skin breakdown or pain. Someone who uses a wheelchair a lot has a risk of pressure sores. Glowing and Flickering Fantasy Item might cause problems for someone photophobic or photosensitive. What do they do when that happens, or how do they prevent that from happening?
Look out for comorbidities. It's rare for disabled people to only have one medical condition and nothing else. Disabilities like to show up in pairs. Or dozens.
If relevant, consider mobility aids, assistive devices, and disability aids. Wheelchairs, canes, rollators, braces, AAC, walkers, nasal cannulas, crutches, white canes, feeding tubes, braillers, ostomy bags, insulin pumps, service dogs, trach tubes, hearing aids, orthoses, splints... the list is basically endless, and there's a lot of everyday things that might count as a disability aid as well - even just a hat could be one for someone whose disability requires them to stay out of the sun. Make sure that it's actually based on symptoms, not just your assumptions - most blind people don't wear sunglasses, not all people with SCI use a wheelchair, upper limb prosthetics aren't nearly as useful as you think. Decide which ones your character could have, how often they would use them, and if they switch between different aids.
Basically all of the above aids will have subtypes or variants. There is a lot of options. Does your character use an active manual wheelchair, a powerchair, or a generic hospital wheelchair? Are they using high-, or low-tech AAC? What would be available to them? Does it change over the course of their story, or their life in general?
If relevant, think about what treatment your character might receive. Do they need medication? Physical therapy? Occupational therapy? Orientation and mobility training? Speech therapy? Do they have access to it, and why or why not?
What is your character's support system? Do they have a carer; if yes, then what do they help your character with and what kind of relationship do they have? Is your character happy about it or not at all?
How did their life change after becoming disabled? If your character goes from being an extreme athlete to suddenly being a full-time wheelchair user, it will have an effect - are they going to stop doing sports at all, are they going to just do extreme wheelchair sports now, or are they going to try out wheelchair table tennis instead? Do they know and respect their new limitations? Did they have to get a different job or had to make their house accessible? Do they have support in this transition, or are they on their own - do they wish they had that support?
What about *other* characters? Your character isn't going to be the only disabled person in existence. Do they know other disabled people? Do they have a community? If your character manages their disability with something that's only available to them, what about all the other people with the same disability?
What is the society that your character lives in like? Is the architecture accessible? How do they treat disabled people? Are abled characters knowledgeable about disabilities? How many people speak the local sign language(s)? Are accessible bathrooms common, or does your character have to go home every few hours? Is there access to prosthetists and ocularists, or what do they do when their prosthetic leg or eye requires the routine check-up?
Know the tropes. If a burn survivor character is an evil mask-wearer, if a powerchair user is a constantly rude and ungrateful to everyone villain, if an amputee is a genius mechanic who fixes their own prosthetics, you have A Trope. Not all tropes are made equal; some are actively harmful to real people, while others are just annoying or boring by the nature of having been done to death. During the character creation process, research what tropes might apply and just try to trace your logic. Does your blind character see the future because it's a common superpower in their world, or are you doing the ancient "Blind Seer" trope?
Remember, that not all of the above questions will come up in your writing, but to know which ones won't you need to know the answers to them first. Even if you don't decide to explicitly name your character's condition, you will be aware of what they might function like. You will be able to add more depth to your character if you decide that they have T6 spina bifida, rather than if you made them into an ambiguous wheelchair user with ambiguous symptoms and ambiguous needs. Embrace research as part of your process and your characters will be better representation, sure, but they will also make more sense and seem more like actual people; same with the world that they are a part of.
This post exists to help you establish the basics of your character's disability so that you can do research on your own and answer some of the most common ("what are symptoms of x?") questions by yourself. If you have these things already established, it will also be easier for us to answer any possible questions you might have - e.g. "what would a character with complete high-level paraplegia do in a world where the modern kind of wheelchair has not been invented yet?" is much more concise than just "how do I write a character with paralysis?" - I think it's more helpful for askers as well; a vague answer won't be much help, I think.
I hope that this post is helpful!
Mod Sasza
I want more people to be aware of disabled joy. The freedom of getting the right mobility aid. The sense of victory and accomplishment when doing a task you thought you would never succeed at. The smug superiority of zooming ahead of your walking friends on a downhill slope. The relief of a proper diagnosis answering your questions. The peace of learning how to radically accept yourself and your body. It ain’t all bad, folks.
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