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

post by @ lucyedwardsofficial on instagram showing how the paralympics includes blind/visually impaired viewers of goalball!

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

Every country should have options for free/affordable accomodation for disabled people who don't want to live with their families and I'm so serious. Personally I'm in the process of realising that my current living situation is actually making me feel miserable lmao, and I was fortunate enough to stumble upon an opportunity to live somewhere else, where I would have 24/7 care without having to see my parents every day. I'm still on the waiting list, but it honestly can't come soon enough. The codependency between disabled people (especially people who were born disabled) and their parents isn't talked about nearly enough (or at all?) and it's a huge fucking shame because I think that if it was more present in the discussion on disability rights, there could be more tools in place to help disabled people who want to be independent from their families while still receiving the care they need.

And still it feels like it's not talked about because families should "stick together" and "sort it amongst themselves" and their disabled relatives are "their cross to bear". Like. Has anyone asked the disabled people in question whether they want to be their family's cross to bear? Whether they want their parents to be the people they see and talk to the most throughout the day? Whether they want to have only them to depend on, and if they were both sick or something, then I guess they're fucked lmao?

So. Accomodation for disabled people who seek independence from their families. Now 🤲🏻

happy disability pride month to those with conditions no one talks about, online or in general:

multiple sclerosis (me lol)

marfans

cerebral palsy

bells palsy

hidradenitis suppurativa

cauda equina syndrome

mixed connective tissue disorder

hyperadrenergic pots

non hypermobile eds types

stickler syndrome

mitochondrial disease

cystic fibrosis

sickle cell disease

myasthenia gravis

post-cholecystectomy syndrome

SWAN (syndromes without a name)

...just to name a few. i see you and you deserve awareness and understanding.

this list is non exhaustive, rb with other conditions you want to see represented!!

[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]

Things to research before getting your first custom manual wheelchair

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

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.

i know we're all sick of self-care being a marketing tactic now, but i don't think a lot of us have any other concept of self-care beyond what companies have tried to sell us, so i thought i'd share my favorite self-care hand out

brought to you by how mad i just got at a Target ad

"gnc straight man being called a faggot doesn't experience homophobia" what the fuck are you talking about. there's absolutely no logic in anything like that. we have kids who literally killed themselves because of homophobic abuse in schools and you would dare to tell them it isn't homophobia that killed them because they weren't actually gay? insane. and so fucking cruel

I stand in front of a crowd and tap the microphone. "Disabled people deserve full bodily autonomy," I announce, and the crowd devolves into shouting. I am being asked about every single contingency in which bodily autonomy can possibly be taken away. I am not allowed to ask these people why they want so badly to control disabled people's lives. I am a representative, after all.

A man in the third row calls me a whore. A woman up near the front calls me a filthy god-hating anarchist. I am the villain of the story. I'm ruining their childhoods when I point out the flaws and ableist tropes in media that I never said they weren't allowed to enjoy. I'm policing their language when I ask them not to use slurs.

Someone else calls me a fascist. A Creationist with Calvinist leanings is using the same arguments against me as the literal social Darwinist. The topic of "faking disability" is brought up and everyone suddenly has a story to share and presents it to me. I am horrified by most of these stories because they feature ambulatory wheelchair users being harassed and young people with invisible disabilities being chased out of bathrooms.

I tap the microphone again and announce, louder, "Autism speaks is actually a hate organization." At this rate, I'm never going to get to my powerpoint on the social/medical model of disability and why the intersection is important. But I am a representative, and in between the name calling and accusations, they are asking me questions. And so I answer.

FYI to sick or disabled folks and those who assist or care for them:  Simplicity patterns has a new line of adaptive sewing patterns.  Designs include tops with port access, clothing with velcro closures, bags and cushions for mobility aids, bibs, chemo hats, and more.

I’m excited about these because they are the first patterns of this kind I’ve seen anywhere.  And Simplicity patterns are great for beginning sewists, with very clear step by step instructions and illustrations.

Patterns can be purchased here:  https://simplicity.com/simplicity/adaptive/

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