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Wheelie Chronic ♿️

@wheeliechronic

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Disabled | Mum | Queer 🏳️‍🌈
Advocate & Activist 💪🏻
Wheelchair User ♿️
💌: [email protected]
Rage, Roll, Repeat 🔥
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Apparently it was about time I actually introduced myself properly… I’m Jen, better known online as Wheelie Chronic. Disabled, sarcastic, permanently fuelled by tea, moral outrage and ADHD rabbit holes. People often assume I only make disability videos, but behind every 60-second educational video is someone who spends hours researching politics, accessibility, benefits, healthcare, disability rights and trying to explain complicated topics in a way everyone can understand. I’m also a former midwife, former social worker, wife, mum, full-time wheelchair user and, according to my family, the latest generation to inherit the title of professional gob shite. If you enjoy disability education mixed with sarcasm, honesty, random thoughts, the occasional existential crisis and watching someone whose ducks have been replaced by squirrels at a rave… you’ve found your people. Welcome to the chaos. #WheelieChronic #DisabilityAdvocate #ChronicIllness #DisabledCreator #DisabilityAwareness by @wheeliechronic
23
3 months ago
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Hi, I’m Wheelie. I’m a disability advocate, activist, wife, mum, wheelchair user, chronic illness collector, and deeply sarcastic human being trying to survive capitalism with a spine held together by vibes and medical tape. I live with multiple disabling chronic illnesses and injuries, I’m an incomplete paraplegic from L4 down, and I’ve been disabled in some way my entire life, even if it took the world a while to catch up to that fact. I’m also part of a beautifully neurodivergent household, queer, somewhere on the asexual spectrum, and physically incapable of minding my own business when injustice is happening. This page exists because disabled people deserve visibility. We deserve dignity. We deserve accessibility. And we deserve to exist loudly. So here you’ll find: 💜 advocacy 💚 education 💜 humour 💚 chronic illness reality 💜 accessible conversations 💚 political frustration 💜 parenting chaos 💚 occasional swearing 💜 and probably at least one rant fuelled entirely by caffeine and audacity Everybody is welcome here. Come as you are 💚 #disabledcreator #wheelchairuser #chronicillnessawareness #disabilityadvocate #neurodivergentfamily by @wheeliechronic
35
5 months ago
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“What’s wrong with you?” It’s a question I get constantly. And I understand why people ask, because when disability doesn’t fit the narrow, stereotypical image people expect, it creates confusion. But here’s the truth: There isn’t a short answer. There isn’t a simple explanation. There isn’t a version of this that fits neatly into a sentence that makes people comfortable. So instead of repeating myself in fragments… this is everything. Said properly. In one place. Living with multiple chronic illnesses means my body is unpredictable, unstable, and constantly working against itself. From severe asthma and life-threatening allergic reactions… To neurological and autonomic dysfunction… To a spinal cord injury that happened from simply standing up… To a genetic condition that affects every part of my body’s structure… This isn’t one condition. It’s a system-wide failure. And the hardest part? Most of it is invisible. So if you’ve ever wondered why disabled people get frustrated explaining themselves, this is why. We’re not complicated. Our conditions are. If this helped you understand even a fraction of what disability can look like, share it. Because awareness shouldn’t rely on disabled people exhausting themselves just to be believed. #chronicillness #disabilityawareness #invisibleillness #eds #pots by @wheeliechronic
21
6 months ago
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“HOW DO YOU PRACTISE YOUR FAITH WHILST BEING SO SICK?” It’s a fair question. And my answer is: I practise within what my body allows. I call myself a Christopagan because when I left the church, I took Christ with me. Left the institution. Kept the relationship. He wasn’t church property. 😂 Christ and Brigid are part of my faith. I occasionally attend church at Christmas or Easter if I can, or to reconnect with people. But my beliefs have changed, and the prayers and hymns mean something different to me now. At home, I have a little altar. My books and tarot decks live above my bed, where I can reach them. I read when I can, journal when I can, and use my cards when I feel called to. Sometimes my practice is simply lying under a duvet and focusing on my beliefs. No dramatic woodland ceremony required. Which is convenient, because my body has not approved the woodland expedition. What I love about paganism as I practise it is having room to choose what resonates with me and adapt how I engage with it. I’m sharing my own experience, rather than claiming to be an expert or speaking for everyone. But I do believe this: a loving deity doesn’t need me to push myself into a crash to prove my devotion. Rest doesn’t make my connection less meaningful. My faith is part of what supports me. It shouldn’t become another demand my body can’t meet. People of ANY faith: how do you adapt your practice when you’re ill or disabled? What helps you feel connected on the days you can’t do much? Share below your approach might help somebody else. 💜 #Christopagan #ChronicIllness #Disability #AccessibleSpirituality #Paganism by @wheeliechronic
5
14 hours ago
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You ignored the problem six times, but apparently my tone on attempt seven is the real emergency. 🙃 Disabled people are expected to navigate discrimination, inaccessible spaces, disbelief and endless contradictory expectations, and somehow remain absolutely delightful throughout. Stay home? Lazy. Go out? Apparently we can’t be that ill. Use a mobility aid? Attention-seeking. Find work we can manage online? Suddenly our disability is a marketing strategy. Then, when we finally get angry, the conversation becomes about our attitude instead of what happened. Sorry, was I supposed to deliver my complaint in a scented thank-you card? “Dear Brenda, thank you for another opportunity to be excluded. The stairs were a particularly thoughtful touch.” Being female adds another layer: speaking firmly gets labelled difficult, anger gets dismissed as hysteria, and “smile more” apparently remains somebody’s contribution to the discussion. Women speaking about misogyny online can even receive threats of sexual violence. An alarming way to demonstrate exactly why we’re speaking up. Anger doesn’t excuse abusing people. But being angry ABOUT discrimination is not the same as committing it. And “be grateful you’re alive” is a spectacularly low bar. I can appreciate being alive and still want access, care, dignity and a life I can participate in. Someone elsewhere having it worse means they deserve better too, not that either of us should shut up. I want disability equality everywhere. All this contempt is aimed at disabled people, a group anyone could join through illness or injury. How ridiculous is it to defend barriers you could end up trapped behind? Our rights shouldn’t depend on how pleasantly we ask for them. Have you ever raised a problem and found yourself defending your tone instead? 💜 by @wheeliechronic
10
16 hours ago
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Before my spinal cord injury, I was already practically a full-time wheelchair user because of POTS. Yes, POTS itself can be that disabling. 💙 October is Dysautonomia Awareness Month, and today’s Day in 60 Seconds is about my neuropathic POTS. In neuropathic POTS, affected small autonomic nerve fibres can interfere with blood-vessel tightening when you’re upright. Blood can pool in the legs and abdomen, leaving less returning to the heart, which speeds up to compensate. My blood has apparently decided my legs are its forever home. Charming. The rest of me has objections. Before medication, trying to stand meant passing out. With medication, being upright went from making me unconscious to being incredibly tiring, uncomfortable and still potentially unsafe. An improvement? Yes. Suddenly able to wander around? Absolutely bloody not. Simply staying conscious isn’t the same as being able to stand long enough to do anything useful. My wheelchair gave me a way to get on with life without every upright moment becoming an endurance event. And you don’t have to faint to have POTS. Someone else’s symptoms may look different from mine and still have a profound impact on their life. I also have hyperadrenergic features. These mechanisms can overlap; they aren’t mutually exclusive. Apparently my nervous system ordered the variety pack. Being able to stand briefly doesn’t tell you whether someone can do it safely, repeatedly or without paying for it afterwards. Wheelchairs are tools for access and independence. We shouldn’t have to reach the point of collapse to justify using one. What do you wish people understood about POTS or being a wheelchair user? Tell me below and share this with someone who needs the reminder. 🩵 #POTS #DysautonomiaAwarenessMonth #NeuropathicPOTS #WheelchairUser #DisabilityAwareness by @wheeliechronic
1
21 hours ago
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Apparently, disability has a dress code and moving your legs gets you thrown out. 🙄♿ In today’s Ask Me Anything, Bex asks what disability actually looks like, especially when people see you walking, working or looking after your child and decide you “don’t look disabled”. Because obviously a stranger’s thirty-second observation is the pinnacle of medical assessment. Cheers, Janet. One of my conditions is genetic. It’s been there my whole life. But having that condition, recognising myself as disabled and feeling ready to say it publicly weren’t the same moment. I started getting ill at sixteen. By twenty-one, I considered myself disabled. Looking back, I’d probably say eighteen. At the time, I just knew something was very wrong. For me personally, disability is about the profound impact on my life. That’s my experience, not a threshold I’m setting for everybody else. Two people can have the same diagnosis and very different experiences. ME is one example: someone with mild ME may still work, while someone with very severe ME may be bedbound and dependent on care. “Relatively normal” is a comparison, not a claim that there’s no struggle. With dynamic disabilities, someone’s abilities can also fluctuate. Being able to do something today doesn’t tell you whether they can do it tomorrow, or what it costs them afterwards. The factual bit in the video is the Equality Act definition: a physical or mental impairment with a substantial, long-term negative effect on everyday activities. The personal bit is when we recognise ourselves in the word “disabled”, and when we choose to share that with other people. You don’t owe strangers a performance of suffering to make your experience believable. 💜 When did you start identifying as disabled? Did saying it out loud take longer? Bex is part of our Discord community, come join us for support and people who understand. #InvisibleDisability #DynamicDisability #DisabledVoices #Ableism #WheelieChronic by @wheeliechronic
3
2 days ago
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Being articulate doesn’t mean I’m coping. It also doesn’t mean I’m no longer disabled. Apparently, explaining the disaster clearly makes people assume there isn’t one. An interesting theory. Unfortunately, my body hasn’t received the memo. 🙃 I can have a brain, communicate well and still be disabled. I can explain my support needs while desperately needing that support. A joke doesn’t cancel pain, and a coherent sentence doesn’t erase exhaustion. The version of me you see online is part of my life, not the whole picture. I script my videos. I don’t film when my brain fog is too bad for me to make sense when I speak. Those moments still exist, even when they don’t appear in your feed. People who know me in real life see far more than a few prepared minutes. Being able to create something when my health allows it isn’t the same as being able to do it reliably, repeatedly and to somebody else’s schedule. And suggesting a phone job because you’ve heard me speak? I’m hard of hearing, mate. Talking to a camera and hearing a caller are different tasks. The camera isn’t mumbling a postcode at me while I ask it to repeat itself. I’m tired of having my ability to advocate for myself used as an argument against the help I’m asking for. Please listen to the words. If I’m telling you I’m struggling, sounding articulate doesn’t make that less true. Have people ever underestimated your disability or support needs because you communicate well? Tell me below. 💜💚 #WheelieChronic #DisabilityAwareness #ChronicIllness #Ableism #InvisibleDisability by @wheeliechronic
8
2 days ago
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You do not have to faint to have POTS. Staying conscious is a very low bar for “doing fine”, frankly. 💙 October is Dysautonomia Awareness Month, and today’s Day in 60 Seconds is about POTS: postural orthostatic tachycardia syndrome. POTS involves an abnormal, sustained increase in heart rate when upright. But the racing heart is only part of the picture. There can also be dizziness, exhaustion, brain fog, nausea, shaking, breathlessness and sometimes chest pain. A shower, a queue or making something to eat can become a major undertaking. “Just stand up for a minute” sounds simple until standing is the thing your body struggles to tolerate. And brain fog deserves more understanding too. It can mean struggling to follow a conversation, process information or find familiar words. It isn’t a measure of someone’s intelligence or how hard they’re trying. Some people with POTS faint. Others don’t. You can be conscious, talking and looking reasonably composed while feeling dreadful. Symptoms and severity vary between people and can fluctuate from day to day. Being able to do something once doesn’t mean you can do it whenever someone else expects you to. As someone living with POTS, I want awareness to go beyond “a fast heartbeat”. The impact can reach into ordinary daily life: washing, cooking, concentrating, parenting and spending time with people you love. Please believe people before they collapse. We shouldn’t need a dramatic landing to make our symptoms credible. What’s one thing you wish people understood about living with POTS? 👇 Save or share this to help challenge the idea that POTS always means fainting. #DysautonomiaAwarenessMonth #POTS #POTSAwareness #InvisibleDisability #WheelieChronic by @wheeliechronic
4
2 days ago
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When did I become disabled and when did I start calling myself disabled? For me, those have different answers. One of my conditions is genetic, so it’s been there all my life. But that and my other conditions really started affecting my life when I was 16. I began thinking of myself as disabled at around 21. Saying it out loud probably took even longer. Now I’m 41, looking back at roughly 25 years of my health significantly affecting my life, and 20 years of identifying as disabled. There wasn’t one tidy moment. No membership card. No welcome hamper. Frankly, the customer service has been appalling. People also have very different ideas about what disability looks like. Some see my wheelchair and immediately understand that I’m disabled—but a wheelchair isn’t a requirement. Disability can be invisible. It can involve sensory impairments or neurodivergence. Someone’s appearance, mobility aid or ability to do one particular thing doesn’t tell you their whole experience. I can explain what it meant for ME: my conditions began having a massive negative impact on my life, what I could do and how I could live. Recognising myself in the word “disabled” came later. That’s my experience, rather than a definition everyone else has to fit. 💬 What does being disabled mean to you? Was there a difference between when it started affecting your life, when you recognised it and when you felt able to say it? You don’t have to share your medical history to join this conversation. And nobody’s identity is up for a public eligibility assessment, Brenda. More AMA questions welcome, your curiosity is keeping the content department operational. 💜💚 #WheelieChronic #DisabilityAwareness #DisabledLife #InvisibleDisability #ChronicIllness by @wheeliechronic
4
3 days ago
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I can need help AND owe someone an apology. My wheelchair hasn’t granted me diplomatic immunity. I checked. 🙃 There’s a difference between recognising the impact of chronic illness and disability, and using them to avoid all responsibility. Unfortunately, people often decide everything is an excuse, or everything must be excused. Either we’re lazy for having limitations, or we’re treated like children who couldn’t possibly be accountable. Neither leaves much room for being an actual person. My capacity changes. Doing something once doesn’t mean I can do it today, repeatedly, safely, or without spending the next few days paying for it. Sometimes saying no is how I protect the capacity I have left. That’s a reason, even if you don’t like the answer. But if I’ve behaved badly, I want to own it. If my symptoms contributed, that context matters. It can help explain what happened and what support might prevent it happening again. It doesn’t automatically erase the impact on someone else. And if my disability had nothing to do with it? Sometimes I’ve just been a prat. Disabled people remain eligible. Equal opportunities and all that. My personal standard is to be honest about my limits AND honest about my behaviour. I won’t use disability to dodge something I reasonably can do, but I won’t damage my health to prove I’m trying hard enough either. We need room for both compassion and accountability. That means listening to people about their capacity, considering the circumstances, and supporting them to put things right when needed. Respect my limits. Let me own my mistakes. Please stop treating those as contradictory requests. Have you experienced either extreme: “you’re making excuses” or “bless you, you can’t help anything”? #ChronicIllness #DisabilityAdvocacy #Ableism #Accountability #WheelieChronic by @wheeliechronic
14
3 days ago
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Being alive and being able to live your life are two very different things. 🩵 For today’s Day in 60 Seconds, we’re talking about different conditions under the dysautonomia umbrella and why medical risk and everyday impact are different measures. Your autonomic nervous system manages automatic functions such as heart rate, blood pressure, digestion, sweating and temperature regulation. Dysautonomia means there are problems with that system, but the conditions involved can have very different symptoms and prognoses. 🩵 Vasovagal syncope causes fainting when blood pressure, and sometimes heart rate, drops. For some people, episodes are occasional and uncomplicated. For others, repeated faints cause injuries and major disruption. 🩵 POTS causes an excessive heart-rate rise on standing. It doesn’t usually shorten life, but it can profoundly affect someone’s independence and ability to work, study or manage everyday activities. 🩵 Pure autonomic failure can cause severe blood-pressure drops on standing, alongside problems with sweating, bladder control and other automatic functions. 🩵 Multiple system atrophy, or MSA, is a progressive, life-limiting neurological condition affecting automatic functions and movement. These differences matter. But they don’t create a neat ranking of who deserves support. Severity varies within diagnoses. Two people with the same condition can have very different experiences, and a condition that doesn’t usually shorten life can still profoundly disable someone. “Not usually life-threatening” does not mean “barely inconvenient.” It doesn’t tell you whether someone can stand long enough to shower, prepare a meal, leave the house or join in with family life. We need to take prognosis seriously AND take quality of life seriously. People deserve care, support and understanding for both. Disability isn’t a competition, and “someone else has it worse” is a spectacularly useless treatment plan. What’s one everyday impact of your condition that people underestimate? 🩵 #DysautonomiaAwarenessMonth #Dysautonomia #POTS #InvisibleDisability #DisabilityAwareness by @wheeliechronic
1
3 days ago
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