Lou Lawrence

31/08/2026

When I first needed a wheelchair, I was completely thrown in the deep end and found myself learning a lot of things in the hardest ways. I knew absolutely nothing about them and wouldn’t have guessed that it would be so costly and complicated until I had no choice but to find out.

I know from conversations with you guys that it’s pretty common that this is people’s foray into the world of wheelchairs. I’m not the only one who really could have used resources like this.

For any non disabled viewers, I think we’d like you to really absorb the exponential costs of wheelchairs and try to understand that while there are systemic supports for some towards those costs, that they’re often not easy to access if you can access them at all, so unavoidably, many of those costs are absorbed by individuals and families often at great expense to their financial stability. It would be nice for that to change, but at the very least, I wish I had been aware at the beginning how much it would cost me in every sense just so I could have been more prepared coz I bet while you can’t see yourself ever needing a wheelchair, believe me, for a long time, I couldn’t either.

My philosophy for most of the content I create is that I’m trying to create the resources I would have most benefited from at various times in my life and disability journey. I hope people will benefit from having the basics broken down in an accessible way because I would have. This series has been months in the making and I hope you like it coz there’s more subsequent parts still to come.



Image Descriptions:
Lime green slide with three hand-drawn, colourful, collage illustrations of different kinds of manual wheelchairs with a purple title “Wheelchairs: a crash course part III“ and a subtitle “manual and power assist“.
Grass green slide with a hand-drawn, colourful, collage illustration of a modern transit wheelchair with an orange heading “transit“. Small black text provides information about the features and costs of this kind of wheelchair. Cost: NZ$250-1900, CA$200-1550, US$150-1100, UK£100-850. Standardised colours and sizes. Attendant propelled. Minimally supportive upholstery. Lighter weight, easier to transport. Folding frame. Fold-away foot plate. Larger castors. Suitable for short-term use on even terrain. Small rear wheels. Attendant and rear wheel brakes.
Butter-yellow slide with a hand-drawn, colourful, collage illustration of a standard manual wheelchair with a pink heading “standard manual“. Small black text outlines features and costs of this type of wheelchair. Cost: NZ$250-2200, CA$200-1800, US$150-1300. UK£100-950. Standardised colours and sizes. Attendant or self-propelled. Minimally supportive upholstery. Attendant and/or rear wheel brakes. Foldable frame. Fold away foot plates. Large larger castors. Large rear wheels with push rooms. Suitable for short-term use on even terrain.
Sky-blue slide with a hand-drawn, colourful, collage illustration of a folding active manual wheelchair with a pink and yellow heading “custom folding“. Small black text outlines features and costs of this type of wheelchair. Cost: NZ$3K-15K+, CA$2450-12.2K+, US$1750-9K+, UK£1300-6.5K+. Custom sizing and colours. Side guards, arm rests, push handles optional. Supportive cushion. Folding frame. Large rear wheels with push rims and quick release axles. Small casters. Folding foot plate. Suitable for independent long-term use.
Pale green slide with a hand-drawn, colourful, collage illustration of a rigid active manual wheelchair with a blue and pink heading “custom rigid“. Small black text outlines features and costs of this type of wheelchair. Cost: NZ$3K-30K+, CA$2450-24.5K+, US$1800-17.5K+, UK£1300-13K+. Side guards, arm rests, push handles optional. Large rear wheels with push rims and quick release axles. Anti-tips optional. Small casters. Custom measurements and colours. Suitable for full-time independent use. Fixed foot plate. Supportive cushion and upholstery. Rigid frame, dual tube or mono tube, adjustable or fixed.
Orange slide with a hand-drawn, colourful, collage illustration of a carbon fibre active manual wheelchair with a purple and yellow heading “carbon fibre custom“. Small black text outlines the features and costs of this type of wheelchair. Cost: NZ$10K-30K+, CA$8K-24.5K+, US$6K-17.5K+, UK£4500-13K+. Custom mould measurements and colour options. Large rear wheels with push rims and quick release axles. Lightweight. Small casters. Suitable for full-time independent active use. Fixed or folding foot plate. Rigid or folding frame.
Mustard yellow slide with a hand-drawn, colourful, collage illustration of an active manual wheelchair in both a fully assembled position and folded down to an ultra small size with a purple heading “ultra fold custom“. Small black text outlines different features and costs of this type of wheelchair. Cost: NZ$10K-30K+, CA$8K-24.5K+, US$6K-17.5K+, UK£4500-13K+. Fold small enough to fit in an overhead cabin space. Ultra lightweight, easy to transport. Supportive cushion. Custom sizing, colours, and parts options e.g. side guards, push handles, anti-tips, seatbelts. Suitable for a full-time active independent use. Small casters. Large rear wheels with quick release axles.
Purple slide with a hand-drawn, colourful, collage illustration of an active manual wheelchair with a bike power assist device attached with a blue, pink, and yellow title “bike power assist“. Small black text outlines the features and costs of this type of power assist. Cost *not including chair: NZ$4K-10K+, CA$3200-8K+, US$2500-6K+, UK£1800-4500. Controlled from the handlebars. Mounts to front frame of the chair. Battery powered and rechargeable. Full variety of wheel sizes and power capacities. Lift casters off the ground making it ideal for offloading. Standard colour and size options.
Salmon-pink slide with a hand-drawn, colourful, collage illustration of an active manual wheelchair with a rear power assist device with the heading “rear power assist“ in yellow and blue. Small black text outlines the costs and features of this type of wheel power assist. Cost *not including chair: NZ$7K-15K+, CA$6K-12K+, US$4K-9K+, UK£3K-6.5K+. Controlled with a wired button or dial, or with a smart watch. Attaches to the rear axle on a bracket. No difference to turning circle. Pushes the chair forward at a fixed speed setting. Battery powered and rechargeable. Easy to transport and can be packed into an overhead cabin space.
Bright blue slide with a hand-drawn, colourful, collage illustration of an active manual wheelchair with power assisted wheels with an orange, purple, and lime green title “power assist wheels“. Small black text outlines the costs and features of this type of power assist. Cost *not including wheelchair: NZ$10K-15K+, CA$8K-12K+, US$6K-9K, UK£4500-6500+. Ideal for low upper body strength. Some models include a joystick option. Heavier wheels but still on quick release. Motor built into the wheel hub. Extends or replaces self propulsion. No difference to turning circle or chair footprint.
Yellow slide with photograph of Lou (white-passing, non binary, millennial, wheelchair user) with small black text that reads "Kia Ora! I'm Lou (they/them) With all my content I try to show the living & learning that comes from being a multiply disabled takatapui in Aoteroa New Zealand & foster safe community" 3 headings in white text bubbles read "" "follow" "subscribe" with socials icons for Instagram, Threads, TikTok, Facebook, and YouTube.

03/08/2026

I hope this is a helpful tutorial, please let me know below if it is!

The key to this design is the genuine leather so apologies to vegans. PU leather will tear though potentially not if you installed eyelets in which case you could likely try it with just about any materials though I have no tested that.

My favourite thing about having it laced on like this is how snugly it hugs the frame. You get no bunching or slipping like you get with Velcro or zips. I also just think the lacing looks extra nice and has a certain sophistication to its uniqueness.

I promised this tutorial a long time ago, I know, and I finally had the stars align to make it happen. I made these brand new ones as part of a full overhaul of my chair that I did as I was taking off its “chorus costume” (the black and gold decorations I put on it to match our stage costumes each year when we compete). I hope it answers the questions of those who requested it 🙏🏻



Video Description: Voiceover explains as clips give a demonstration of how Lou makes a set of yellow leather wheelchair frame guards for their TiLite chair by punching holes and lacing the leather onto the frame of the chair. At the end, they model the finished project.

30/07/2026

27/07/2026

It started with paralysis. Then came learning to navigate life in a wheelchair. Today? Taking steps with just AFOs. 🎬👇

Watching this clip, it might look like a simple, linear journey of recovery. But the reality of my body is far more complex.

I live with functional paralysis on top of chronic spinal cord damage. What that means in practice is a constant balancing act. As we work to treat and uncover function from beneath my Functional Neurological Disorder (FND), there is always an underlying, quiet anxiety: How far can we actually go? When will we hit the hard ceiling set by my underlying spinal cord damage?

The truth is heavy, but it’s real: even with all the intense effort, rehab, and progress going into treating my FND, we know that over time, I am likely to gradually lose this function to the chronic spinal damage. Progress in my body doesn't mean a permanent cure—it means maximizing every single moment and movement I have right now.

And that is exactly why I’m sharing this milestone today.

To anyone in the FND community who has been written off, dismissed, or told that recovery simply isn't in the cards for you: please don't give up hope.

Even if complete recovery isn't the outcome, the right treatment and support can help you reclaim function. Gaining back even small degrees of mobility or independence can make daily life so much easier, reopening doors you thought were locked forever. You deserve care, you deserve tailored treatment, and your progress—no matter how it looks or how long it lasts—is valid and worth fighting for.

I will never ever be able to repay my physio for all she does and has done for me — taking suggestions for a Christmas gift lol 🫪😂🙏🏻



Video Description: A high speed montage of dozens of images and clips that show the process of Lou (white–passing, non-binary, millennial) becoming paralysed, learning to live a full life as a wheelchair-user, and eventually progressing through many stages of learning to walk again. As the music hits a climax, a firework explodes and text appears in sparkles that reads “new level unlocked” followed by a longer clip showing Lou in their living room with their flatmate, Bethany (White, female, millennial), in her power wheelchair in the background. Bethany grins as Lou concentrates hard and takes some small steps aided by nothing but their AFO braces they are wearing but which are not clearly visible.

26/06/2026

June is Complex Neuro-Connective Tissue Disorders Awareness Month. 🎗️

Living with Cervical and Thoracic Spinal Instability means fighting a daily, invisible battle against disc degeneration, chronic spinal cord injury, and severe chronic pain. Of all my disabilities, these are by a wide margin the most debilitating—yet they are the exact conditions that are the hardest to access proper diagnostics and treatment for. The medical gaslighting and systemic barriers are exhausting.

But here is the bottom line: I have to keep going. I don't have a choice. And I couldn’t do it alone. The Complex Neuro-Connective Tissue Disorder community is my absolute lifeline. To my fellow warriors: thank you for keeping me afloat. We deserve answers, care, and visibility.



Video description: Lou (white passing, non-binary, millennial) speaks to the camera from their manual Wheelchair holding a guitar. After running through an introduction, they casually perform the song “I see fire“ by Ed Sheeran. They are in their bedroom, casually dressed in jeans, a linen shirt with a bolo tie, and sneakers.

15/06/2026

It is a profound and painful irony that within a community born out of the fires of oppression, exclusion still finds a way to take root.

The LGBTQ+ movement was forged by people who refused to be hidden, shamed, or medicalized for who they were. We fought—and continue to fight—on a fundamental truth: Loving who we love and being who we are isn’t a choice, and it cannot be changed. It is an intrinsic part of the human tapestry.

This exact truth is shared by the disability community. No one chooses a disability, and for many, it cannot be changed. Yet, despite these deeply parallel lived experiences of fighting for basic societal acceptance, bodily autonomy, and the right to exist publicly, disabled LGBTQ+ individuals frequently find themselves on the periphery of the very spaces meant to offer them sanctuary.

Pride events hosted in venues without wheelchair access, noisy marches without quiet decompression zones, or content shared online without image descriptions or captions; A nightlife culture heavily reliant on stamina, sensory overload, and physical spaces that inherently exclude those with chronic illness, neurodivergence, or mobility aids. A lingering, toxic undercurrent within q***r culture that prizes idealized, able-bodied perfection, leaving disabled bodies desexualized or ignored.

If a space is only safe for able-bodied q***r people, it isn't truly a safe space.

The trans women of color, drag queens, and street youth who led the Stonewall Riots didn't fight for a sanitized, exclusive version of freedom—they fought for everyone who was cast out by society. To honor that legacy, we must dismantle the ableism within our own ranks with the same ferocity we use against homophobia and transphobia.

Let's make our Pride truly accessible. Let's amplify disabled q***r voices, demand accessible venues, and remember that our strength lies in our diversity, not our conformity. We didn't fight our way out of the closet just to build new walls.

+

Image Description: Digital illustration of a black woman on roller skates who is standing on a disability pride flag in order to fly a rainbow pride flag. A watercolour background bears the phrase “What happened to inclusive?” as well as a gender symbol and wheelchair symbol. It is signed with the tag

11/06/2026

Wheelchair Fashion Tips: Autumn

Autumn has just ended here in the southern hemisphere and it’s still 3 months away for those of you in the north (hi! I know there are a lot of you) so the timing of this post is a bit off but hopefully you like it regardless. I love the fashion in autumn — I love everything in autumn — and I know that’s the case for so many of us.

I’ve been experimenting with some more western styles: bolo ties, bandana ties, button downs, and in slide 8 you see me take it to the extreme for the convention after-party that had the theme “Regent Rural Rave”. I’ve also been trying to find more creative ways to dress more masculine and reduce my dysphoria.

My style is a work in progress but this collection of autumn outfits feels good even if it’s not perfect. I hope these little tips are useful and that the outfits can inspire you, especially if you are also a wheelchair user and/or plus size. Owning your fashion choices is such a powerful way to reclaim your body and identity from the stereotypes and stigmas that come with the labels of disabled and/or fat.

Own your style, it feels amazing!



Image Descriptions:
1. Title slide with a gradient background featuring the title “Wheelchair Fashion Tips” and the subtitle “Autumn, Enby, + Plus Size” In a white text overlaid over 4 cutout images of Lou (white-passing, non binary, millennial) in different outfits and poses, 3 in their manual wheelchair and 1 using crutches.
2. Photograph of Lou (white-passing, non binary, millennial) posing in their manual wheelchair in front of a tall hedge. They are wearing light distressed jeans with white Dr Marten boots, a black and white vertically striped loose button down shirt, and a red drivers cap with a yellow suede shoulder bag. A white text overlay reads “shirts with oversized buttons are so much easier on hand function”.
3. Photograph of Lou on a veranda of a house with a vast view of nature, posed in their manual wheelchair. They are wearing black wet-look loose jeans and an oversized white button down with a bolo tie and black and white vans sneakers. A white text overlay reads “jeans with elastic waistbands are so much more comfortable when seated”.
4. Photograph of Lou in a park on a cloudy day posed in their manual wheelchair. They are wearing blue barrel jeans with a white button down and bolo tie with a back sweater layered over and a teal and gold embroidered coat with mega chunky black sneakers, yellow fingerless gloves, and a pewter-coloured slouch beanie. A white text overlay reads “open jackets need waist fastening or to be cropped to avoid damage from wheels”.
5. Photograph of Lou in an alley of street art, posed in their manual wheelchair. They are wearing blue and white flared leggings with an oversized black graphic T-shirt with a Van Halen print, white sneakers, a green mask, mirrored sunglasses, navy headphones, and a yellow suede shoulder bag. A white text overlay reads “cross-body purses do work with self propelling so long as the strap is shorter”.
6. Photograph of Lou posed in their manual wheelchair on a residential street in front of a deciduous tree losing its leaves. They are wearing black flared trousers, yellow platform sneakers, a colourful loose velvet sweater, and a multicoloured oversized crocheted snood scarf. A white text overlay reads “snood scarfs that won't interfere with self propelling are much more practical than ones with loose ends”.
7. Lou taking a mirror selfie in an empty dance studio in their manual wheelchair. They are wearing beige long loose shorts and a black and brown tie-die T-shirt with red and yellow custom chunky Fila sneakers, brown sunglasses, and a blue crocheted cross-body bag. A white text overlay reads “Tailored shorts, skirts, or trousers are much more comfortable seated with a sneaky elastic waistband”.
8. Photograph of Lou posing in their wheelchair on a high street at night. They’re dressed up in a western style outfit, wearing a blue tasseled button down with a neck bandana and bolo tie, brown high-waisted trousers held up with suspenders, black fingerless gloves, silver pointed boots, and a silver woven cowboy hat. A white text overlay reads “For a high waistband with a seated plus size belly, suspenders are a better option than a belt”.
9. Photograph of Lou posed in their manual wheelchair on a residential street on a sunny morning with sunlight shining from behind them. They are wearing light wide leg jeans with a white button down with 3/4 sleeves, an orange tie, and a grey crochet sweater with cropped sleeves and waist, yellow platform sneakers, and brown sunglasses. A white text overlay reads “sweaters with cropped sleeves and waists are perfect for seated self propelling”.
10. Photograph of Lou in an entryway in artificial light at night, posed using yellow SmartCrutches. They are wearing loose black wet-look jeans with a rust-coloured merino top with a baroque print chiffon bomber jacket, and yellow platform sneakers. A white text overlay reads “when you'll transition to walking, add feature sneakers for stylish Stability on your feet”.
11. Photograph of Lou in front of a garden lining a corrugated iron fence, posed in their manual wheelchair. They are wearing a white button down with tailored detailing and cropped sleeves, with a bandana tie, brown linen shorts, and white sneakers. A white text overlay reads “cropped sleeves on button downs avoids tyre burns on the cuffs when self propelling”.
12. Yellow slide with photograph of Lou (white-passing, non binary, millennial, wheelchair user) with small black text that reads "Kia Ora! I'm Lou (they/them) With all my content I try to show the living & learning that comes from being a multiply disabled takatapui in Aoteroa New Zealand & foster safe community" 3 headings in white text bubbles read "" "follow" "subscribe" with socials icons for Instagram, Threads, TikTok, Facebook, and YouTube.

08/06/2026

In 2019, Wellington City Library was shut down for earthquake strengthening. For 6 years it sat there, full of books, empty of life, the renovations taking several years.

That same year it closed, I was living in the CBD with my ex-fiancé. She and I adored the library and found it a lifeline living in an expensive city, in a tiny apartment, with almost no money. It was also the year I became a wheelchair user.

Last Friday I was back at the newly re-opened City Library. Last time I was there, I was using the pharmacy wheelchair we rented for a few weeks — the very first one I ever used. We thought it would be temporary, but that could not have been more misjudged.

So since I was last inside that library, I have been on one hell of a learning curve — a learning torrent. But, as I made my way there, I felt like I was at a high school reunion flexing my success. Because, in those first few years with the wheelchair, FND, hEDS, a toxic relationship, pandemic lockdowns, I had to learn everything the hard way and struggled endlessly to live in that city built on cliffs, hills, and valleys with only a manual chair.

But last Friday, I saw all the lessons and self-advocacy paid off. After 7 years, I have a set-up that is perfect for my needs. In minutes, my suitcase, day bag, Smart Drive and chair were packed into an Uber and then unpacked and reassembled in minutes. With the Smart Drive on I don’t struggle to propel with my 60 litre suitcase clipped to the back and my day bag strapped on top. I easily manoeuvred it all on and off the train hoist. I took myself down the subway, up an elevator, and onto a bus into the heart of the CBD. I bought lunch, tucked the drink into my cupholder and secured my bakery bag with the LapStacker. It was all so effortless and I was so confident.

16 year old me would probably be horrified to learn they’ll become a wheelchair user, but 23 year old me who was just learning how to, would be so proud and excited to know how much easier it becomes.

It was nice to be back at the City Library.



Image Descriptions:
Lou (white-passing, non binary, millennial) in their custom wheelchair smiles in a modern library with red beams, sitting by a table with a tablet and pink keyboard. They wear a neck brace, rainbow leg warmers, and yellow shoes.
Throwback of Lou in 2019 with short blonde hair sitting in a standard manual wheelchair on a brick street next to a painted rainbow crosswalk. They wear a grey t-shirt, yellow pants, reddish boots, and silver headphones.
A close-up throwback shows Lou with short blonde hair and glasses wearing a black face mask and silver headphones in a library. They wear a white t-shirt, and a tattoo is visible on their forearm.
Lou in their custom wheelchair and neck brace sits profile-view at a library table, typing on a pink keyboard connected to a tablet. They wear headphones, rainbow leg warmers, and yellow shoes.

28/05/2026

Literally had an existential crisis for a few days when I heard this news 😫

I’m tired, and I know we all are.

Fighting tooth and nail for absolutely everything, beneath a barrage of legislation and service changes that threaten our dignity, identity, independence, safety, autonomy, and health, is inherently defeating and I know after almost 3 full years of this coalition running this country, we are all worn thin and so tired.

That’s exactly what they want as they flood the zone pre-election.

It’s incredibly hard to find the strength to fight back and defend our rights but if you can find anything in you to do so, do it, and if you can’t, just make sure you’re ready to vote for a better future for us all.

Kia kaha, kia maia.

PS: I know I almost never do a video looking this hōha but I’m aptly time and energy poor this week and really wanted to get this out so I had to film at 9pm from bed. I don’t think it’ll be a regular occurrence.



Video Description: Lou (white-passing, non binary, millennial) speaks straight to camera from their bed with colourful pillows behind them. They’re wearing glasses, a yellow beanie, and their dark blonde dreadlocks are in pigtails. At one early point, a screenshot of a govt info page about the “Disability Support Services Bill” is green screened into the background.

11/05/2026

I offer this recipe up to both increase awareness of the ways hEDS can (but doesn’t always) affect people, and to the community in case there are helpful ingredients for others. Because, of course, hEDS is a vast spectrum all the way from those who don’t even realise they have it, to those who are critically ill and/or severely disabled.

hEDS affects every patient in a way as unique as their fingerprints, so everyone needs their own custom-fit recipe of treatment and management, as far as the medical system in their community is able to support them. Some of the things in this recipe of mine could maybe not be needed in the same way if I were better able to access treatment, especially if I had been diagnosed much earlier and could have made very different decisions about what I did and how.

In my case I am markedly disabled by hEDS but it’s quite clear in hindsight that had I been diagnosed 5-10 years earlier, I could now be in a much less disabled position had I taken different action. This is why early diagnosis is so valuable and should unquestionably be the goal.

There are 13 types of EDS altogether, one of which is HSD which in countless cases is essentially the same disorder as hEDS, but the other 11 types are much more rare and different. For these reasons, the classifications of the Ehlers Danlos Syndromes are currently under review with the plan to redefine them in a way that better serves each type.

It has taken me 8 years to find this recipe for management that works best for me and I hope in sharing it, other EDSers and the general public, can learn something valuable. Take what you want, leave the rest. Cheers to EDS & HSD Awareness Month 2026.



Image Descriptions:
1. Turquoise slide featuring the title “EDS & HSD Awareness Month 2026, Top 10 ways I manage my hEDS” and a collage of thematically appropriate cutout images showing Lou (white-passing, non binary, millennial) engaged in different activities and some of their illustrations of different aspects of their disability.
2. Orange slide featuring the title “1. medication” and a collage of thematically appropriate cutout images showing photographs and illustrations of different medication examples. White text reads “My 20+ medications have not cured any of my symptoms by any means but I do depend on them to live, and to live as well as I do. Finding your right unique medication profile can make life-saving differences even if they cannot cure anything completely.”
3. Grass green slide featuring the title “2. mobility aids” and a collage of thematically appropriate cutout images showing photographs and illustrations of different mobility aid examples. White text reads “Between joint instability, cumulative and chronic injuries, pain, POTS, and chronic fatigue, other than medication, mobility aids make the most impact on my quality of life with hEDS. Using a wide range of aids for different days keeps doors open to us.”
4. Turquoise slide featuring the title “3. hydrotherapy” and a cutout photograph showing Lou from behind in their manual wheelchair wearing their swimsuit at the edge of a hydrotherapy pool. White text reads “Movement is one of the only ways to preserve stability with hEDS but gravity and hEDS are definitely enemies. So, when it comes to movement, the buoyancy and proprioceptive input from being in water are game changers.”
5. Bubblegum pink slide featuring the title “4. bracing” and a collage of thematically appropriate cutout images showing photographs and illustrations of different bracing examples. White text reads “Bracing is a great tool for treating,managing, and preventing injuries with hEDS and over time that adds up to slower progression, more mobility, less pain, fewer surgeries, and greater quality of life.”
6. Purple slide featuring the title “5. pacing” and a cutout series of illustrations of a moderated to do list and 4 differing examples of Lou resting on their bed. White text reads “Learning to pace, plan, and prioritise your daily activities is non negotiable. Keeping track of your pain and energy and pacing accordingly is the only way to avoid constant flares and crashes.”
7. Blue slide featuring the title “6. electrolytes” and a collage of thematically appropriate cutout images showing photographs and illustrations of different fluids and electrolyte additive examples. White text reads “Keeping extremely well hydrated... with electrolytes added to the water you drink, makes a much bigger impact than you'd expect. It keeps blood pressure up, heart rate down, makes medication absorb better, increases energy, prevents bladder infection, and flushes out toxins, and all these have a cumulative benefit over time.”
8. Green slide featuring the title “7. adapting activities” and a collage of thematically appropriate framed photographs showing Lou engaged Im a wide variety of activities in adapted ways. White text reads “You don't always have to say no to challenging activities. It's true you may not be able to do them in a conventional way, but thinking laterally about adaptations to your methods can keep countless options open that you may not have thought.”
9. Bubblegum pink slide featuring the title “8. carer support” and a collage of thematically appropriate cutout images showing photographs and illustrations of different examples of receiving carer support. White text reads “Carers/support workers are a game changer. With hEDS limited capacity due to pain, fatigue, and more, it can be easy to find yourself unable to do anything other than survive. Having carer support to cover the basics on good and bad days allows you some capacity to engage in work or community as well.”
10. Red slide featuring the title “9. profiling bed” and a collage with a photograph of Lou on their profiling bed and an illustration of one. White text reads “For me, hEDS comes with spinal instability, severe chronic pain, and significant fatigue. I must spend hours every day in a reclined position and my profiling bed allows me to comfortably do so without slumping on pillows or getting joint pain from struggling to adjust my positioning.”
11. Turquoise slide featuring the title “10. temperature therapy” and a collage of thematically appropriate cutout images showing photographs and illustrations of different examples of heat and ice packs. White text reads “Pain is a huge part of hEDS and there are hundreds of creams, braces, medications, and devices out there that claim to ease it. I have tried most of them and the one that always comes out on top of everything is good old heat pads and ice packs.”
12. Yellow slide with photograph of Lou (white-passing, non binary, millennial, wheelchair user) with small black text that reads "Kia Ora! I'm Lou (they/them) With all my content I try to show the living & learning that comes from being a multiply disabled takatapui in Aoteroa New Zealand & foster safe community" 3 headings in white text bubbles read "" "follow" "subscribe" with socials icons for Instagram, Threads, TikTok, Facebook, and YouTube.