AMAZING PEOPLE: DISABILITY EDITION


[cover photo: images of each person included in this article - from left to right; Rose, Tanja, Bethany, Jessica, Caitlin and Jameisha.]

Article by Emily Bourne.

In this article I’m going to be highlighting some people with disabilities that you NEED to be following, whether it be to help to eradicate your ableism or just to know there is someone else out there who knows how you feel. 

Here are my favourite spoonies:

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@caitlinrose29



Caitlin isn’t just a very special friend to me, but she is such a wonderful advocator for chronic illness and disabilities. 


@my.eds



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healing isn’t linear. since surgery, i have been dealing with a lot. spasms, pain, gp flare. and i keep kicking myself for not really updating you all. so here’s what i can type up right now. my surgeons PA believes my flare is from my nerves being inflamed from surgery. it feels like i was back in april/ may but 24/7. no matter what i take the nausea and pain are relentless. but i’m also slowly getting better. i have a feeling this flare is going to stick around for a little while. i’ve also been in my feelings about being behind in life. not being able to leave my house for the past few months has really been getting to me. im stuck laying in bed while all of my friends are going to college and parties and class and studying and all the things i long for. but, i’ll be okay. just not today. and probably not tomorrow. but one day.
A post shared by rose๐Ÿณ️‍๐ŸŒˆ (@my.eds) on

Rose is such a magnificent, strong, lovely girl. She documents every part of her journey with multiple chronic illnesses - and strives to educate able-bodied people of the struggles people with disabilities face every day.


@bethanypurnell



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Today is my 5 year Stomaversary! I named him Ed, short for Shit ‘Ed ๐Ÿฅฐ 5 years ago today I was facing life changing surgery and on the actual day of my surgery, they told me that they were going to remove my rectum (which wasn’t planned) and I basically cried “NOOO THAT MEANS FOREVER ๐Ÿ˜ญ๐Ÿ˜ญ ITS PERMANENT!!!” But now looking back, it’s honestly the best decision for me ๐Ÿฅฐ Even if I did have the option to have it reversed, I don’t think I would.. I totally can’t be bothered with rubbing cream on my ass multiple times a day, the skin tags that would bleed around my little hole ๐Ÿ™„๐Ÿ˜‚ & the constant fear of shitting my pants in public. Yeah, my bag can still leak & I have shit my shirt a couple of times but having my bag has been such a benefit for my life and FINALLY I can say my health too ๐Ÿฅฐ Having a bag is NOT a cure for Crohn’s. People need to remember that... after I had my large intestine removed, my Crohn’s severely attacked my small intestine. I couldn’t eat, I couldn’t sleep & I ended up dropping to around 90lbs (which is 6 stone something). I was literally dying. My body was wasting away. I passed out in hospital & then they tube fed me and OMG best time of my whole entire life ๐Ÿ˜‚ Also, having an ileostomy bag does come with its own problems. Dehydration is probably my main factor, leaks, sore skin & just feeling mentally unwell about the appearance etc. There are more problems that many different people face. Some don’t face any at all, but they are just some of my personal issues. I love Ed most of the time, he’s an amazing little character that I love to dress up and make fun of because “IF LIFE AINT JUST A JOKE, THEN WHY ARE WE LAUGHING?” ๐ŸŽถ but some days I fricken hate him and I want everyone to know that it’s ok not to be ok... as long as there’s a light at the end of the tunnel & you get out of your dark place. Keep fighting & keep being #StomaStrong ๐Ÿฅฐ because “WE’RE ALL IN THIS TOGETHER ๐Ÿ‘” ๐ŸŽต
A post shared by Bethy ✌️ (@bethanypurnell) on

Bethany is a Crohn’s Disease sufferer, who is proud of her bag. She encourages other people with ileostomy bags to love them, and not feel ashamed of their stomas. I have personally learnt so much about Crohn’s from her, and now you will too!


@witch_jpeg



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CW:bitter/angry things related to disability lol * Ive been invisibly sick for 10yrs, but Im not in a good place w my disabilities. It’s hard on so many levels to talk about, bc we already live in a world that doesn’t take us seriously, or dont see us as full people bc of our disabilities. Online is one of the few places where we have the space to spread education+can access positivity from our own. You can be disabled and whole, chronically ill and happy. We’re more than ableism wants us to believe we are. I want to be one of those voices. But I’m not disabled and happy. I have been, but atm im really just exhausted. For over a year now my health has been awful, with no signs of it getting consistently better again. “That’s what it’s like, it goes up and down”, that’s what I always say. But it’s not going up. My chronic illnesses are affecting every single part of my life negatively and im sick to death of being sick. it’s lonely, isolating and infuriating. “resting through it” is doing nothing and my pain levels are rising as I cant move properly from lack of energy. I’m almost 22 and im watching old classmates and friends travel the world, graduate, going to protests & marches, concerts, conferences & casual last minute trips, get jobs & build lives. And I hate that I cant just be happy for them. I want to be, but instead I have to work myself into a wall to stop it from crushing me. I want to be patient & endlessly kind to my body. I want to be the functional, active-to-an-extent positive disabled person. I want to motivate and support those in my situation. But instead I have to stay in bed. Get some rest. Watch time pass through the window from my bed. Try to keep “I don’t wish I wasn’t disabled” from becoming a lie again. I have nothing motivational to end with. im angry and exhausted, and I wish I had the energy to change the fact that im the only disabled person I know. maybe ill at least post some drawings again soon . . . . #spoonie #disabled #chronicillness #chronicpain #fybro #fybromyalgia #ME #myalgicencephalomyelitis #chronicfatiguesyndrome #chronicallyill #spooniewarrior lol lit lit lit lit
A post shared by Tanja๐Ÿ‘ฝ21 (@witch_jpeg) on

Tanja is an artist, queer icon and spoonie. She is on this list because she is such a wonderful human being, and she is a spoonie creative - support your spoonie artist friends!


@thechroniciconic



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๐ŸŒธTODAY’S LOOK OF DEFIANCE๐ŸŒธ Today was the first time I left the house wearing a soft collar, which I’ve been recommended for commuting. I felt quite conscious of wearing it in public and this weird discomfort with looking nice whilst simultaneously disabled. It didn’t help that on the way to the station a couple of people pointed at me. It’s almost like I feel apologetic for it? I don’t understand it fully but I know it’s deeply rooted in the idea of what a disabled person “should” look like and the shame of not fitting that. I absolutely hate that I have let society’s ideas around disability penetrate my mind and make me feel apologetic for being authentically me. I’m gonna make damn sure on the days I’m able to, I continue to be vibrant and obvious. I will not shy away because that’s what is expected of me. I was a pretty extra person before I got unwell, I’m not gonna let that change now? The validity of my disability is not dependent on how I look and I should NOT have to feel apprehensive that I won’t be taken seriously or be offered a seat on the tube by those who decide my appearance means I cannot be disabled. I still have to dress to suit my pain / PoTS needs, I can’t wear anything that pulls on my shoulders or neck. I can’t wear anything that makes me hot or takes a long time to take off for the toilet. All my choices are dictated by my body and I should never ever have to justify those choices to abled people who’s ignorance is hurting us. I am continuously learning to develop a thicker skin when out in public, I’ve accepted that people can be mean and that I’m going to experience looks and comments. This understanding of the reality I’ll continue to experience of being young and disabled will only make me push harder against it. Today I had more spoons than usual and it meant I could do my first social thing in a couple of weeks. I was proud that I made it through the day and even prouder that I didn’t let people’s judgment ruin my confidence today.


Jessica is a disability advocate, known for the iconic T-shirt ‘not getting well soon’ (which you can buy here.) I love her ferocious energy, even though she is most likely feeling like poop 24/7 (big spoonie mood). 


@youlookokaytome



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The feeling when your flare symptoms start to ease up a bit. Also the feeling when you step outside for 5 minutes and now your face doesn't match your chest ๐Ÿ˜‚⁠ ⁠ Honestly though, these days have me thinking of how far I've come in regards to being kind to myself. Last year, in a flare up like this, I'd probably still be working. Taking a couple sick days would be the last thing I'd want to do. I'd probably be pushing through and staying silent in an attempt to try and convince everyone that I'm fine. ⁠ ⁠ I still have a long way to go to change my negative thought processes. I still HATE taking sick days. While I know I need the time to recover, I'm just itching to jump back to the swing of things. I often get cabin fever and start doubting myself worth. It takes time to disconnect worth with productivity.⁠ ⁠ Despite all of that, I'm glad I'm taking my health more seriously. I'm doing my best to practice what I preach on Instagram and give my body what it needs.⁠ ⁠ [#imagedescription A photo of Jameisha. She is looking at the camera. She is wearing a orange short with black patterned detail on it. She has a nostril and septum piercing. He hair is tied back in two dutch twists.]⁠ ⁠ ⁠ ⁠ #youlookokaytome #chronicillness #flareup #lupusawareness #spoonie #chronicpain #invisibleillness #selflove #wellness #health #mindfulness #loveyourself #mentalhealth #wellbeing #gratitude #autoimmunedisease #pain #lupus #disability #disabilityblogger #mentalhealthawareness #selfie #me #london #darkskin
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Jameisha has Lupus, and uses her social media platform to educate people on what Lupus is and issues surrounding it. One of the things I love most about her page is her IGTV videos; she gives tips to people with chronic pain, real talk on living with chronic illness and education on disabilities. She is a great inspiration for me - love her!


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Thank you for reading, and if you're part of that list - thank you for being an inspiration! ‘Amazing People’ will be a series that I will continue with different categories - one that I’ve already published is ‘AMAZING PEOPLE: QUEER EDITION’. 


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