#new wheelchair user

[zebulontheplanet]

I want people to understand, as a new wheelchair user, I need patience. I need help. I need people to be there for me. Being a new wheelchair user is hard. Using a mobility aid is hard. Being new to using it, figuring out how to use it, dealing with the public, dealing with accessibility issues, all of that is hard. I need support.

My mom has been my support. She encourages me to use my wheelchair, she helps me get my wheelchair in and out of the car, she pushes me if i need it, she tells me to tell her if I need help. I appreciate that, and it’s the support I need. Me needing the support of others isn’t failure. Needing support isn’t failure. It’s thriving.

[giantkillerjack]

Can anyone who uses a wheelchair (especially a motorized chair) please explain to me what the process was like to find the right chair?

I live in America and it seems that the doctors just want me to order one online without trying it at all, which seems insane for such a very very specific and very expensive medical device.

In order to find an office chair that didn't hurt my back, I went to every single furniture store in Chicago. So it seems wild that the selection process for something way more expensive and important would be so vague and confusing. I'm really scared that I'll get the wrong one.

How do you get the right wheelchair??????

[gleditsia-triacanthos]

rating ways i get around as a ~1 month non-ambulatory wheelchair user in order of discovery (reblogging if/when i find a new method)

1. a hospital-issued wheelchair. i’ve already complained about these on my blog at length, here’s my last one. i’ve been in a few different ones, so this will have to be my broader takeaways. pros: better than dirty public floors, more efficient than any chair-less method, a couple did have pushrims. cons: not right for any real outings or outside tasks at all (you do not want to be in one a minute longer than you strictly have to), not really comfortable, designed overall to make it easy for caregivers, not really to give independence (i suppose not an objective flaw, more of a reality that didn’t mix well with my situation or personality). 5/10.

2. being carried. this one depends a little bit on the person, but i kind of hate the principle either way. i don’t want another back injury in the world and it feels humiliating. pros: it hasn’t had to happen often (and will hopefully happen less as i make my living situation more accessible). cons: like, everything. not fun for the person who has to do it and not fun for me. depends again on the person and their method, but rarely comfortable, practical, or sustainable. 1/10.

3. “pike” position (sitting up, legs in front of me, sliding my body with my arms). pros: i can be fully independent, it feels good just to move, and i can even tackle the stairs in my parents’ house like this. can be fun on hardwood. cons: not as fast as a chair, friction can complicate things, especially when i’m not wearing full-length pants (cEDS), can’t really reach anything above light switch level (that’s if i strain), can make your arms BURN (especially going up stairs). only really practical inside homes. 6/10, would be rated higher if i could do it in other places.

4. lotus pose. this is basically a variation of the last, except i fold my legs in a specific way. i feel like it reduces drag in some ways? pros: somewhat more sustainable, easier to open doors and go upstairs. cons: harder/scarier to go downstairs (+ friction, can’t do it in public). 6.5/10.

5. custom manual wheelchair. it came only a few days ago, so my feelings could change. it doesn’t quite… feel like an extension of my body? yet? i need to learn wheelies. pros: like everything. so much faster than the last three methods, i can use it in public, designed for long-term use and my body specifically. cons: the accessibility problems that come with a wheelchair, can’t navigate my house as easily, rough on fingers and a shoulders after a while. 7.5/10.

[sourapplerings]

so i think im going to my first ever pride event in a week and a half, which is super exciting but a little scary. and im also going to a mother mother concert at the start of july!

the last time i went to a mother mother concert tho, i had a lot of trouble with my joint pain and ended up missing a few good songs bc i had to find somewhere to sit. i felt super awful bc one of said songs was hayloft, which my bf was really excited for

that concert was almost two years ago now (holy shit) and since then i got my grubby little mitts on a wheelchair. i’ll definitely be using it at the concert, and maybe pride since i’ve been not feeling well lately and i get heat exhaustion/sickness pretty badly

my question for you, tumblr dot com, is how to make these events a little more accessible and less stressful. i’ve never used a wheelchair in public, in fact i’ve only really used it once when i sprained my ankle and walking was really hard. the chair fits into my bf’s trunk, so transportation isn’t an issue. my current plan is to pack a mini bag with meds, water, maybe a snack??, some alcohol pads (for nausea), and maybe headphones and sunglasses for sensory reasons at pride.

for my chronically ill girlies (mainly ppl with stomach and joint issues, neurodivergent folks, and ambulatory wheelchair users) do you guys have any tips for navigating public spaces? what kind of hurdles can i anticipate?

[disability-can-be]

Took my new chair out on her first trip! I do have one question for fellow wheelers...

Static. How do you keep from electrocuting the people you love.

[reasonsforhope]

"For [Tanner] Green, the chief engineer at Not a Wheelchair, this is one of the thousand complications standing between his team and a rather lofty goal: upending the manual wheelchair marketplace.

If you’ve heard of Not a Wheelchair, it’s likely because of its owners, Zack Nelson, the star of the 8.8-million-subscriber YouTube channel JerryRigEverything, and his wife Cambry, a para and manual wheelchair user. The Nelsons got into the mobility equipment business a few years ago when they released The Rig, an electric, adaptive off-road device with a simple yet robust and functional design priced significantly lower than anything else on the market. Now, they’re bringing that same ethos to manual wheelchairs.

Not a Wheelchair aims to offer a base-model, custom manual wheelchair at a similar or better quality than most of the insurance-approved wheelchairs in the U.S. for $999.

Yes, that’s just under $1,000 for everything — wheels, handrims, tires, side guards and rigid, angle-adjustable backrest included. And the company plans to have a turnaround time of weeks, rather than the monthslong slog that it typically takes from order to delivery.

When I first heard about this, it sounded awesome and a bit far-fetched. It’s hard to find a pair of quality wheelchair wheels for less than $500. Same with a rigid backrest. How were they going to offer both, plus a custom wheelchair frame without compromising on quality? I drove to their headquarters in Utah to find out...

So how does Not a Wheelchair’s base model chair stack up to other options on the market? I hate to sound like a preacher, but … it’s totally reasonable! It hits the mark of being at least as good, if not better, than the majority of insurance-approved wheelchairs in the U.S.

Touring the factory, I saw other prototypes scattered all around the facility. There’s a beefier, four-wheel drive version of The Rig that the company just launched. There’s a track wheelchair that’s still in development. It’s clear that Not a Wheelchair doesn’t intend to stop at a simple, manual wheelchair. Inexpensive components, more advanced electric off-road devices, power assist, it’s all on the table. “We’re just really excited to see where this leads,” says Green."

-Article and video via New Mobility, October 1, 2024

[tinted-blue]

This is so fucking funny actually

For context so this doesn't get misread; I'm considering getting a wheelchair for general use for myself after a trip to the hospital for extreme vertigo where I almost lost consciousness in my bathroom and literally could barely walk on my own for hours after. I was in a wheelchair the entire time I was there and it was so nice to be able to get around without being tired or worry I was gonna fall.

Oh, one more thing! About my power chair!

I know it is just allowing me to do a normal human amount of stuff, but it makes me feel like a divine and powerful being?

When I go grocery shopping with it, I feel like laughing maniacally and shouting , "FOOLS! WALKING AROUND ON YOUR FEET, LIKE ANIMALS! I AM THE FUTURE! PART HUMAN, PART MACHINE, ALL FABULOUS!"

Is that weird?

I watch a lot of sci-fi.

I'm sure it's fine.

[dandelionsresilience]

Dandelion News - September 8-14

Like these weekly compilations? Tip me at $kaybarr1735 or check out my new(ly repurposed) Patreon!

1. Pair of rare Amur tiger cubs debuting at Minnesota Zoo are raising hopes for the endangered species

“[The Minnesota Zoo’s] Amur tigers have produced 57 cubs, [… 21 of which] have gone on to produce litters of their own, amounting to another 86 cubs. […] “They’re showing a lot of resiliency, which is something that we work hard for in human care. We want these animals to have a lot of confidence and be able to adapt to new environments just as they’re doing today.””

2. Powered by renewable energy, microbes turn CO₂ into protein and vitamins

“The team designed a two-stage bioreactor system that produces yeast rich in protein and vitamin B9. [… The protein] levels in their yeast exceed those of beef, pork, fish, and lentils. […] Running on clean energy and CO2, the system reduces carbon emissions in food production. It uncouples land use from farming, freeing up space for conservation[… and] will help farmers concentrate on producing vegetables and crops sustainably.”

3. JCPenney Launches Apparel Collection Aimed At Wheelchair Users

“A major department store is rolling out a new line of clothing specifically tailored to meet the needs of women who use wheelchairs featuring options for both everyday wear and special occasions. [… The clothing have] modifications like zippers located for easy access, pocket positioning and extended back rises optimized for the seated position and shorter sleeves to limit interference with wheels.”

4. Snails bred in Edinburgh Zoo sent to re-populate species in French Polynesia

“Thousands of rare partula snails bred at Edinburgh Zoo are to be released in French Polynesia to restore the wild population of the species.The last surviving few of the species were rescued in the early 1990s[….] 15 species and sub-species [are being bred in zoos for repopulation], the majority of which are classed as extinct in the wild.”

5. [NH Joins 19 Other States] to Provide Essential Behavioral Health Services Through Mobile Crisis Intervention Teams

“[CMS] approved New Hampshire’s Medicaid State Plan Amendment for community-based mobile crisis intervention teams to provide services for people experiencing a mental health or substance use disorder crisis. […] The multidisciplinary team provides screening and assessment; stabilization and de-escalation; and coordination with and referrals to health, social, and other services, as needed.”

6. Recovery plan for Missouri population of eastern hellbender

“It is expected that recovery efforts for the Missouri DPS of the eastern hellbender will reduce sedimentation and improve water quality in the aforementioned watersheds, which will also improve drinking water, as well as benefit multiple federally listed mussels, sport fish and other aquatic species.”

7. How $7.3B will help rural co-ops build clean power—and close coal plants

“[The funds are] serving about 5 million households across 23 states [… to] build wind and solar power, which is now cheaper than coal-fired power across most of the country. […] Some of it will be used to pay down the cost of closing coal plants[….] federal funding could help co-ops secure enough wind, solar, and battery resources to retire their entire coal capacity by 2032, cutting carbon emissions by 80 to 90 percent and reducing wholesale electricity costs by 10 to 20 percent[….]”

8. Native-led suicide prevention program focuses on building community strengths

“[Indigenous researchers have] designed programs that aim to build up a community’s endemic strengths, rather than solely treating the risks facing individuals within that community. By providing support and resources that enable access to Alaska Native cultural activities, they hope to strengthen social bonds that build resilience. […] “In a Yup’ik worldview, suicide is not a mental health disorder, and it’s not an individual affliction, it’s a disruption of the collective.””

9. Another rare Javan rhino calf spotted at Indonesia park

“A new Javan rhino calf has been spotted in an Indonesian national park, the facility's head said Friday, further boosting hopes for one of the world's most endangered mammals after two other […] calves were spotted earlier this year at the park, which is the only habitat left for the critically endangered animal.”

10. Transparent solar cells can directly supply energy from glass surfaces

“[Researchers have] unveiled a method of supplying energy directly from glass of buildings, cars, and mobile devices through transparent solar cells. […] It has also succeeded in charging a smartphone using natural sunlight. It also proved the possibility that a screen of a small mobile device can be used as an energy source.”

September 1-7 news here | (all credit for images and written material can be found at the source linked; I don’t claim credit for anything but curating.)

[jenny-94]

Love it 😍

Liebe es😍

[milkweedman]

My big wheelchair bag is yet again falling apart. And it stretched out a ton, which i failed to account for. This is the second one I've made and they're just getting completely shredded, mostly by the bus (there is, for some insane reason I cannot comprehend, a belt attachment in the disability searing area that sticks out and is sharp. And usually I'm trying to wedge myself into a tiny space while ableds are in the way being clueless and/or refusing to move.

I need to make a new one but I'm not sure wtf to make it out of that won't get it destroyed so quickly.

I'm kind of considering quilting a bag out of some hardwearing canvas, which should be pretty repairable. Current bag is technically repairable but badly designed tbh. Live and learn I guess. Only worry is idk if I can actually sew thru thick canvas without destroying my hands.

Would not mind some advice, especially if you have experience with functional durable quilting or have hand and muscle issues and/or use a wheelchair yourself ! I don't wanna make a new wheelchair bag every 4 or 5 months, but thats what's currently needed OTL.

[turtley-ausome]

Had a meeting this morning with DDS MFP group home people one is same lady i met last time and then her superviser and a nurse part of the team came too it was good meeting im very happy about that! They said when I get into group home i can choose what colors they paint my walls i want pink and purple! And i can probaly get a bubble tube and sensory swing for my room eeeeeeeee! And my mom will be able visit more they said becase group home can help for transportation! I cant wait for when i fiNALY have a home! So sick of living in hospital institution !!! We also talk about my allergies becase i have mint allergy makes it very hard to share a bathroom. In past was told maybe i get master bedroom in a group home as accomadation for this sinse it has own private bathroom plus need bigger room becase i have two wheelchairs!

[houstonxbreed]

Having a severe disability that gets progressively worse over time is such a lonely experience. The more you decline, the more your loved ones leave because your limitations become a “burden” on them. Meeting new people is exhausting because you have to constantly explain your disability just for them not to understand and end up leaving you anyway. You’d think that people would wanna support you when you’re in such a vulnerable position in life but people are just quick to throw you away. Disabled people are forced to deal with the physical and mental distress that chronic illnesses cause all ALONE because society refuses to be empathetic.

[gleditsia-triacanthos]

kind of reeling still, but i guess here’s a reason accessibility is so important.

(mentions of weight and weight loss in a physical health context)

i saw gi for the first time in two months today, and finally got weighed by getting out of my chair and scooting onto the scale. i’ve lost twenty pounds. even taking atrophy into account, this is very much Not Good for someone with gastroparesis, and i’m now on an nj tube for the first time in a year.

i’ve been taking my meds and adhering to the gp diet as usual, but after becoming paralyzed in december, i haven’t been journaling/keeping track of my calorie intake. because i haven’t been able to walk, i haven’t been able to use my scale at home or at any other doctor’s office. i haven’t been as attentive to my body as i am typically, though i figured i’d lost a bit.

i’m honestly freaked out. until now, accessibility has been about convenience to me (even if the inconvenience is major). this is sort of a lesson for me too but ohmygod—

medicine NEEDS to be accessible. it’s insane that it isn’t, especially when disabled people often have chronic health conditions.

for disabled people with multiple conditions: one condition getting worse or manifesting does NOT mean the others take a backseat. it’s so so overwhelming and feels like a full time job to manage comorbidities, but they will not take a month or two off. please please please be safe. be smarter than i am.

peace + love!

[minaespen]

apparently i'm supposed to mask how i really feel even tho i dont express it at all

how dare i answer "how are you doing" with "not the best"

[allthecanadianpolitics]

Canada's chief accessibility officer is taking airlines to task for failing to treat wheelchair users with respect after Air Canada forgot last week to bring her wheelchair on a cross-country flight.

Stephanie Cadieux said that when she flew from Toronto to Vancouver on Friday, she discovered that her wheelchair had been left behind.

She posted about the incident on X, formerly Twitter. Her posting received overwhelming support — almost 650 retweets and more than 2,500 likes.

"This was immensely frustrating and dehumanizing — and I was furious," she later said in a post on her LinkedIn account. "The tweet has been widely viewed and shared. Air Canada responded and my chair has been returned to me."

Full article

Tagging: @politicsofcanada