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I think wed all benefit if everyone on this website learned that sex work isn’t just part of a feminist issue, it’s part of a modern cultural erasure of sex and pleasure and a class antagonism that has been fostered since the advent of capitalism, and more importantly: I like my fucking job

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

why isn't there much info about coathanger pain with POTS?? or at least why is this not more common knowledge? i don't think i've ever seen anyone talking about this. every time i've asked about it (+other POTS symptoms it comes with in my case) in chronic illness spaces people have suggested everything from fibro, MCAS, a CFS leak, a herniated disc, CCI, etc. but nobody ever said "coathanger pain."

but dysautonomia international posted a silly little graphic on their instagram and now i have my answers to why i was having a ton of symptoms that did suggest a herniated disc but there were no signs of disc herniation upon getting an MRI and for some reason it was triggered by working morning shift/having to be upright for a long time in the mornings. i would get excruciating, searing pain that feels pike a knife has been shoved into the base of my neck and the whole of my upper back would have this icy burning sensation. accompanied by me losing the ability to think straight, losing my coordination, and slurring my speech. i left work crying one morning because of how much pain i was in before i eventually came to the conclusion i couldn't do morning shifts.

that's coathanger pain. my spine is okay (i think...for now, anyway.) according to The Stuff they don't know what causes coathanger pain necessarily but they theorize it has to do with reduced blood flow to those areas of the body (which would track since POTS tends to involve blood pooling in the extremities and such.) it's also not exclusive to POTS and is associated with dysautonomia or orthostatic intolerance in general i think.

One example of the power of obtaining the autonomic history is the Coat Hanger Phenomenon. In people who have neurogenic orthostatic hypotension or orthostatic intolerance, they can complain of pain, or like a charley horse kind of sensation, in the back of the neck and shoulder areas in the distribution that’s like a coat hanger. And it goes away when the person is lying down. That’s an important symptom. And the way I explain it is that the muscles that control your head are tonically active, otherwise your head be falling down all the time. Tonically active. That means they’re using up oxygenated blood all the time. Well suppose you’re in a critical situation where there’s a drop in blood flow at the delivery of oxygenated blood to the head. In that situation these muscles are not getting enough oxygenated blood. They’re tonically active, so they’re producing lactic acid and you get a charley horse, just like you’d have a cramp anywhere else. It’s a skeletal muscle thing. So, I think when somebody complains of Coat Hanger Phenomenon, that’s a very important sign or symptom. And that is not invented. That’s a real phenomenon. It points to ischemia to the skeletal muscle holding your head up.

(Dr. Goldstein, The Dysautonomia Project)

worsening cognitive dysfunction, slurred speech, and worsening coordination because blood's not getting to my brain. bordering on emergency-room-level pain in my upper back and neck because not enough blood is getting to those parts of my body. got it.

anyway, i legit have NEVER seen this discussed until recently and i thought i should share.

I also would like to add Bill Shannon as a great source of reference poses for cool crutch positions. He is a wonderful dancer and disability activist and I love his work so much. Hope you enjoy this visual breakdown of some of the poses of Shannon Technique!

Crutches poses

My husband and I became catechumens in the EOC for which we are incredibly grateful. Here’s my dilemma though.

I can’t attend Divine Liturgy because of my chronic illness. The priest is very understanding of this and is genuinely trying to accommodate us the best anyone can.

He wants us to get plugged into the community despite my limitations and is thinking of safe ways for us to do so, since I am immunocompromised and my husband (who has lupus) is also facing potential new health concerns. Though we want community as well, I am having debilitating anxiety around it.

My illness is so unpredictable. I have good days and bad days. Some days, I need my wheelchair or another mobility aid (which I don’t like using because I don’t like being vulnerable but I NEED to use them for safety and/or energy preservation). But other days, I do not need anything. Chronic illness has SO MANY facets and triggers and layers of unpredictability! In the past, many people (mostly people from our old church) have accused me of faking my disability when they’ve seen me on a good day, or when they’ve seen me without a mobility aid after needing one a previous day. They’ve told me I’m making excuses, that I’m faking for attention, etc.

No one but my husband ever sees the “details” of my chronic illness, after all. They don’t see me when I’m curled up all night on the bathroom floor bc of gastroparesis agonizing and crying for it all to end, or being SO extremely fatigued due to POTS that I can’t move a limb out of bed. They didn’t see me when I fell that morning which warranted me using my rollator for the rest of the day to prevent another concussion. They don’t see the painful internal struggle of trying to walk in the summer heat without support. Anyone with a chronic illness can relate!

People from my last church (not an OC) said hurtful things and more and told me I’m going to hell for a number of reasons- because I don’t have kids, because I don’t go to church on Sundays etc. i had poured my soul into that parish. Then, everyone left. We felt abandoned.

This served as the catalyst to question our faith -tradition, theology, and everything- and ultimately, everything came together to lead us to Orthodoxy which is a HUGE blessing! But I’m just SO EMOTIONAL because though I’m more than ready to embrace the fullness of faith and the Sacraments when the time comes, I don’t think I can ever be a part of a community.

It’s exhausting to have to try to explain the ins- and- outs of my illness to new people, many of whom wouldn’t even believe me. And I just don’t want to get hurt again. I know it’s wrong of me to assume that every new person I meet will eventually judge me and leave, but that’s just what we’ve consistently experienced. That’s all we know. I have a small circle of friends, and I’ve known all of them for many years - those friendships have stood the test of time and I’m grateful for them.

I honestly don’t know why I’m making this dumb post. I’m not trying to throw myself a pity party, I just need a place to vent and let it all out. I’m also just in a totally bad headspace right now and my anxiety levels overall are insanely high with my husband preparing for a high stakes surgery in a few days and me having side effects from the rescue medication I had to take last night. But if you’re reading this and have any advice, please tell me. And please pray for us. Please pray for peace and healing in our lives, spiritually, physically, and emotionally. Please pray that i can stop myself from spiraling into depression - I can feel it happening. I feel like a burden to my husband and the few friends I have and the devil is probably angry that I made the decision to become a catechumen. Please pray that we can find joy this Pascha, even though we are separated from the Church, knowing that we rejoice in Jesus’s resurrection. The pain runs deep but His love runs deeper.

Thank you. 🤍

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.

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.

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]

"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