#muscular dystrophy representation

[cripplecharacters]

I have a character with muscle atrophy in his legs, and I’m debating whether to have him use crutches, a wheelchair, or having him use different aids depending on how he’s feeling that day. How bad would his muscle atrophy need to be to use a wheelchair full time vs. crutches vs. a combination of the two (I should also note that he is relatively active, frequently going on missions with the other characters to rescue civilians and such, if this is relevant at all)

Hi!

It will depend on his specific muscle weakness and his upper body strength, but as a general rule: If he can bear about 30% body weight on each leg and he has sufficient upper body strength, he could use crutches with a four-point gait. If he can bear more weight than that in his legs, or if one leg is significantly stronger than the other, crutches would also work. Gait will depend on exactly how much weight he can bear on each leg, and how much support he needs for balance while weight bearing. With crutches, he might also wear AFOs or other braces for additional support.

If he can't bear 30% body weight on each leg while supporting the rest with his upper body and crutches, he'll prefer a wheelchair. He might want multiple aids if his condition is progressive, if he can usually use crutches but prefers a wheelchair on bad days or for long distance travel, or any number of other reasons that could impact his ability to use one or the other.

Activity can help maintain existing muscle strength to some degree (depending on type of muscular atrophy), but any condition affecting muscle strength and tone will make exercise more tiring than for an able-bodied person. So your character might like primarily using a wheelchair with power assist for the sole reason of having the support if he needs it. He could also strap crutches to the back of his wheelchair for support if he does want to stand up while primarily using a wheelchair; that's an option for some more flexibility.

Mod Rock

[cripplecharacters]

[Image description: three photos of Jillian Mercado, a Latina with short blonde hair who has muscular dystrophy and uses an all-black powerchair. In the first photo, she is wearing a silk dress with embroidered crystals and a similarly crystal ferronnière. In the second, she's posing while wearing a black dress decorated with silver gems, with hip cutouts, and glitter knee-high boots. In the last photo, her whole outfit is detailed with intricate gold elements, reminiscent of rococco architecture. She is wearing a large crown in a matching style. End image description.]

Jillian Mercado by Indira Cesarine for Untitled Magazine, Sept 2021

[nostalgiclittlespace]

This fic was requested by @yourneurodivergentlady, who asked for a fic with Caregiver!Angel Dust taking care of his Little with epilepsy and muscular dystrophy+lots of comfort.

DISCLAIMER! I do not have epilepsy or muscular dystrophy myself; so I apologize if this is not an accurate representation of those experiences! I would appreciate feedback for future reference! Note: most of what I depicted was supposed to be Myoclonic and Focal Aware Seizures.

Regardless, I hope this fic can be comforting to anyone who experiences chronic pain/illness, lasting injuries, neurological conditions, etc. Enjoy, love you all!

SFW AGE REGRESSION FIC. DNI IF NSFW, KINK, PROSHIP, MAP, OR SIMILAR. DO NOT REPOST TO OTHER SITES

Characters: Caregiver!Angel Dust & Little!Reader

Wordcount: 1091

Description: Your epilepsy and muscular dystrophy have caused a painful flare up. But your caregiver won’t leave your side, giving you a warm bath, gentlessness, and plenty of love

Your mortal life had ended, but the trials and tribulations that came with it had not. 

Dying means being in a better place, they said.

There won’t be any more pain, they said.

You had been bamboozled, tricked, lied to, and cheated by whoever came up with those ideas.  The promises of Hell’s eternal suffering did not disappoint; the same aches and pains you had endured in mortal life still tormented you now.

This week had been especially bad; painful flare ups discouraging you from getting out of bed and souring your mood.   

Sleep had been cruelly elusive, your tired muscles begging for rest while they involuntarily jolted and tensed.  Everything tingled and ached and the most frustrating part was that it just wasn’t stopping.

Angel had been your saving grace; carrying you wherever you needed to go, persistent cuddles, practically waiting on you hand and foot.  He had even taken the past two days off work, and vowed not to leave until you were feeling better.

His bedroom, dark, dim, with toys, blankets, and pillows everywhere, had become not only a nursery, but also your sanctuary.  Currently, you could hear him bustling around in the attached bathroom, filling the tub with warm water, bubbles, and bath salts, in hopes that maybe your third attempt at a relaxing soak would ease your muscles.

Your body seemed to blanch at the thought, as your exhausted legs kicked out and stiffened involuntarily.  You whined, waiting for the seizing to quit as Angel returned to the bedroom, his sleeves rolled up and a bath towel slung over one arm.

“Hey, sugar.  Bath is ready,” he hummed in a low, compassionate, smiling voice, as if he could tame your mind’s fits with patience and sweetness.  That said, the comfort of his voice was not lost on you; even if he could not change the pain and fatigue, his presence made it more bearable, and looking forward to its end was notably easier. 

You nodded, and before you could even request it, Angel wrapped his arms around you and carefully, incredibly gently, lifted you from the bundle of blankets you had been hiding in for the past few hours.  Having six arms certainly came in handy in times like this; every one of your weary limbs were completely supported by his.  One hand held your head and neck on his shoulder, one around your back, another two supporting your rear, and another two around your lower legs.

Angel carried you to the bathroom, where he effortlessly maneuvered you out of your clothes and into the warm, soapy water.  He helped you lean back, making sure you weren’t without support for a single second.  And, once you were comfortable enough, he grabbed the softest sponge he owned, one that felt like smooth velvet against your skin, and wiped away the old tear tracks on your face.

“Such a sweet baby,” he cooed, pressing a kiss to your clean cheek.  

“Sweet Mama,” you mimicked with a yawn.

“Aw, you flatter me, sweetheart,” Angel laughed lightly, booping your nose.  “Aren’t you just the best little one in the world?”

“You’re best Mama.”

Angel’s smile grew again, a hand going to pet the top of your head.  “What a great team we make then, huh?”

You returned his smile with a small giggle, feet kicking back and forth in the water.  Not on purpose, in fact your aching joints would have preferred if the small seizure would cease.  A little water and suds spilled over the sides of the tub, which Angel wiped up without a word, no scolding for the accidental mess.  You had learned long ago that apologizing was pointless as he’d shower you with kisses and reassurances that it was easy to clean and not your fault.

After twenty minutes of relaxing in the water’s cozy embrace, Angel lifted you out of the tub with just as much precision as he had placed you in with.  In seconds, you were wrapped in a fluffy towel, its insulation keeping you cozy in the colder air.  You were truly limp now, all muscles going lax, too tired and too eased by the bath to protest anymore.  They still ached, atrophied and overused.  However, you could feel sleep creeping up on you, and you prayed your incessant restlessness would remain at bay long enough for you to nap.

Angel had carried you to the rocking chair in the corner of the room, where he sat, swayed you back and forth, and finished drying the droplets from your face to your toes.  He didn’t ask you to move once, maneuvering himself around you rather than vice versa.  And, when he was done, he dressed you in your warmest, softest pajamas–effortless and impossibly gentle despite your ragdoll limbs.

“Tired, hun?” Angel asked, even if the answer was obvious.

“Yeah,” you mumbled, eyes already drifting closed and consciousness fading away.  

You could have passed out then and there, as the rocking chair’s steady movements and your heated pillow that was Angel beneath you held you steady, if it weren’t for an untimely tingling in your hands.  They stung and burned, wanting to fist together to ease the sensation, if not you for sapped muscles and aching bones.  They twitched and tickled unpleasantly.  You whined in response.

“What hurts, baby?” Angel murmured.

“Everyt’ing,” you replied truthfully, throat tightening and eyes welling with tears.

“Shhh, I’m sorry, love,” he whispered, kissing your forehead.  “Anything I can get you?  Need to move, a blanket, a paci?”

You shook your head, then trained your concentration onto Angel’s soft fur.  His hand that massaged your back, the feather-light brushes of his white fur.  He paid careful consideration to the resuming tears and hiccups, wiping them away but not trying to convince you to settle.  

His comfort didn’t come with empty promises or insistence that everything would be okay, because he knew you weren’t okay—not right now anyway.  It might be better tomorrow, but that didn’t help you today.  

But he’d stay.  He’d stay even though there was nothing more he could do.  He’d hold you and carry you and run the baths and give you all the medicine he could even when they didn’t change anything, just because he didn’t want you to do it alone.  

It didn’t lessen the pain.  But it made it easier to bear.   He would see you through to the end, hold you until you could smile, and kiss away any hurts; and the gesture alone was the biggest difference he could make.

[cripplecharacters]

[Image Description: (Taken from alt text) Digital sketches of a young white woman in a wheelchair. She is wearing a lot of makeup, a black shirt, high-waisted pants, and big boots. Her wheelchair is mostly black with gold metallic elements and a hydration system placed on the back. Her hair is in a wolfcut and black with blonde streaks. In the main sketch she is sitting in her powerchair with the seat elevated all the way up and sticking her tongue out in a silly way. Next to that is a drawing of her standing neutrally to show her outfit and body type. She has narrow shoulders and skinny limbs due to spinal muscular atrophy. Text next to her says 'just as an outfit ref, she can't stand". In the corner is a portrait of her with her hair in a ponytail, without makeup, and with acne and big dark circles under her eyes. Her name, Aurore, is written out at the bottom with stars around it. End ID.]

Image description in ALT text

New OC design :) she's a disabled lesbian in an evil yuri situationship with her classmate and a chronically online filmbro (insufferable). She uses a wheelchair because she has SMA and had it painted in fun colors to fit her aesthetic more

[japannkenn]

OG japanken followers should know that I am currently turning “i pick the petals, he loves me not” (luberto florist AU) into an original story that I hope to get published one day!! It’s very personal and cathartic for me to write. I have cried many a times. It will be a love letter to the queer/disabled community (especially those with muscular dystrophy) + a geeky amalgamation of everything I love haha. Lots of classic film quotes. And Beatle references. WWII. Muahahaha. Im going for novella or short story length and really am just going to project the disabled experience with no filter. I’m tired of the lack of accurate representation in the disabled community. I’m fixin this shit my damn self. And besides, with all this uncertainty and fear and livelihoods being put on the line in the disabled community, I think we deserve a story where we can feel desirable and loved. When I finish it and if/when I am published I’ll reblog this post with links and I can be ur new Ali hazelwood!!!! x

That said, iptp, hlmn is not updating again 💔

[valkyries-things]

JILLIAN MERCADO // ACTRESS

“She is an American actress and fashion model represented by CAA Fashion. As a wheelchair user (due to muscular dystrophy), she is one of the few professional models who has a visible physical disability in the fashion industry. A prominent figure in the new wave of models challenging beauty ideals in the fashion industry, Mercado is keen to fight the lack of representation of people with disabilities in the fashion industry and their enduring stigma.”

[nursingwriter]

¶ … disease (Scoliosis ) (name, location, pathophysiology) Scoliosis is actually a derivative of the ancient Greek term skoliosis "obliquity, bending" (Online Etymology Dictionary) Scoliosis is an abnormal curvature of the spine looking somewhat like the letter C. Or S. And affects approximately 7 million people in the United States (Scoliosis Research Society website). It is most common during childhood and particularly in girls. Scoliosis is called different names depending on the stage of development that it hits. In children aged 3-4, it is called infantile scoliosis In children age 4-10, it is called juvenile scoliosis. In adolescents (or kids age 11 -- 18) naturally it is called adolescent scoliosis. Scoliosis most affects females and the curving generally increases during the growth spurt. It is most similar to Kyphoscoliosis which is another abnormal curvature of the spine but Kyphoscoliosis or Kyphosis (for short) is distinct form scoliosis in that its representation is a hunched over, slouched posture that, contrary to scoliosis, is rare at birth (PubMed. Health. Kyphosis ) 2). Etiology (explore all factors that may be involved in the development of the disease) Causes of the disease are approximately 65% of the time unknown. This is called idiopathic scoliosis. The closest speculation is that genes are involved although causes are most likely multifactorial. What these factors are is debated amongst scientists. Various genes are involved in transmission, one of these genes being the CHD7 (Ogilvie JW, Braun J, Argyle V, Nelson L, Meade M, Ward K (2006.) There are two types of scoliosis that are, however, known and these are: Congenital scoliosis: A form of scoliosis that is present at birth and occurs when the baby's ribs or spine bones do not form properly in the 3rd or 6th weeks of in utero. Its percentage is 15%. Neuromuscular scoliosis (10% chance of occurring): Scoliosis that is caused by a nervous system problem that affects the muscles, such as cerebral palsy, muscular dystrophy, spine bifida, physical trauma and polio. It often -- although not always -- occurs during adolescence (11- 18 years) as for instance with tethered spinal cord syndrome and worsens during adolescent growth spurt (Agabegi & Agabegi, 2008). Another lesser known cause of scoliosis is that which comes from the condition called Chiari malformation which originates from a malformation of the brain. This rare form of scoliosis causes the most harm and is the most difficult to treat as is congenital and neuromuscular scoliosis. Idiopathic scoliosis, on the other hand, is more vulnerable to treatment and physiology harmless (JAMA.) 3). Clinical manifestations (subjective and objective signs / symptoms) Scoliosis usually has no symptoms. The signs otherwise are clear: the curvature of the spine. Some symptoms may include the following: Backache or low-back pain A tired feeling in the spine after sitting or standing for a long time Uneven hips or shoulders (one shoulder may be higher than the other) The spine curves more to one side than to the other. Complications of scoliosis usually include: Breathing problems (in severe scoliosis) Low back pain Lower self-esteem Persistent pain if there is wear and tear of the spine bones Spinal infection after surgery Spine or nerve damage from an uncorrected curve or spinal surgery Uneven arms, hips, or leg length. In some cases, slow nerve action Most severe cases of scoliosis can actually be life-threatening since they put pressure on the lungs and can adversely affect breathing 4). Diagnostic tests (enumerate and explain them (laboratory, radiology etc.), including preparation and post-test observations) Routine scoliosis screening has now become a fixture in many public schools usually during the Middle or Junior years. Genetic testing for Adolescent Idiographic Scoliosis launched in 2009 is still being investigated. For those who have not received screening and where scoliosis is suspected, there will be a physical examination where the individual will be asked to bend over -- called the Adams forward bend test - in order that nurse can examine the spine. X-rays of the spine are also conducted since the spine may actually appear worse than seen by the naked eye. Other signs that the nurse will look out for will be: The skin for Cafe au lait spots (i.e pigmented marks) The feet for cavovarus deformity (where the sole of the foot is hollow when placed on floor) She will test the abdominal reflexes She will test muscle tone for spasticity. Other tests may include: Spinal curve measurement (scoliometer screening) where the person's gait is assessed and test is conducted for possible other abnormalities (such s spina bifida) MRI of the spine (PubMed Health; online) 5). All aspects of the management of the pathology: Not all patients with scoliosis are given treatment. Treatment depends on the following conditions: The cause of scoliosis Where the curve is in the patient's spine Significance of the curve If the patient's body is still growing Most patients with idiopathic scoliosis do not need or receive treatment. People with scoliosis, regardless of whether or not they receive treatment, should be monitored on development of their spine every 6 months. Treatment includes braces and sometimes surgery Braces Children who are still growing are often treated with a back brace which controls the position of the spine and prevents it from further curving. The back brace is made precisely to fit the pattern of the curve and is adjusted as the child grows and is usually given only to children over 10. Braces do not work for patients with congenital or neuromuscular scoliosis. . Surgery Scoliosis surgery is done when the spine is significantly bent and it involves straightening the curve as much as possible. During surgery, the spine bones are held in place with one or two metal rods, which are held down with hooks and screws until the bones straighten out; a brace is worn for a while fowling surgery for the same purpose. Casting may alternatively be employed. The surgical procedure is often done with a cut through the back, belly area, or beneath the ribs. There are 2 kinds: Anterior fusion: where surgery is made through an incision at the side of the chest wall. Posterior fusion: where incision is made on the back. Two surgical procedures are the following: Spinal fusion - a common treatment that is alternatively employed where bone (either harvested from elsewhere in the body or donated) is grafted to the vertebrae so that as the spinal column grows it synthesizes and becomes rigid. Thoracoplasty - a less common option where a thoracic curve is used to straighten the spine. Bone grafts are used from the pelvis to replace and cover the rib hump. In all cases, the back brace afterwards is worn until the doctor decides it no longer necessary. Reaction to Treatment People with mild sclerosis usually react better to surgery and the brace than others. One of the effects, however, may be back pain as the person reaches elderly age. The prognosis for those with neuromuscular or congenital scoliosis varies. These children usually have another serious disorder such as cerebral palsy so the goal usually is just to have them sit straight in a wheelchair. The more entrenched the scoliosis, the more difficult it is to treat and, indeed, congenital scoliosis usually requires numerous visits. 6). Find impairment for 4 Needs of Virginia Henderson and 4 basic cares (intervention in relation to the pathology and unmet needs). Since scoliosis treatment may be psychologically embarrassing, many patients profit from emotional support and counseling. Patients are also given physical therapy in order to help explain the treatments and to make sure the brace fits correctly as well as to help them resume their daily lives. The nurse and OT or PT shows the patient various self-care strategies for daily life (such as for dressing, bathing, grooming, personal hygiene, and feeding). These may include a bath bench or handheld shower nozzle. There are also various assistive devices for dressing and grooming as well as a long-held reacher those therapists may suggest helping the individual gain independence and avoiding painful movements such as bending over to reach objects. Specialized cutlery or kitchen dishes are another device. There are also common assistive technologies to help children become more comfortable in their everyday activities. One of these is special seating that helps children have postural control. This helps the child participate in play and classroom activities. Teenagers, for instance, who have scoliosis accompanied with muscular dystrophy have specialized wheelchair seating. Bracing also helps individuals engage in exercise and sport so that they are able to join in all activities. Individuals conservation techniques are taught to help with shortness of breath or lung constriction such as when swimming. Techniques have reached the stage where a person with scoliosis can involve himself in almost every aspect of life would he so wish. Prime rehabilitative programs are Occupational Therapy, and Chiropractic or osteopathic therapy. The Schroth method is another physiotherapeutic treatment that has become popular. It uses targeted exercises within an emotionally supportive background to help patients overcome the trauma of scoliosis and tis treatment. It also helps in substantially reducing pain; another problem particularly in adults (Weiss 1993). Sources Agabegi, ED &; Agabegi, Steven S. (2008). Step-Up to Medicine (Step-Up Series). Hagerstwon, MD: Lippincott Williams & Wilkins p. 90 Hedequist DJ. Surgical treatment of congenital scoliosis. Orthop Clin North Am. 2007;38:497-509, vi. JAMA. Health and Function of Patients With Untreated Idiopathic Scoliosis http://jama.ama-assn.org/content/289/5/559.full?sid=330aa7fa-2478-4cb8-962b-5ca35fd42fef Lonner BS. Emerging minimally invasive technologies for the management of scoliosis. Orthop Clin North Am. 2007;38:431-440. Ogilvie JW, Braun J, Argyle V, Nelson L, Meade M, Ward K (2006). "The search for idiopathic scoliosis genes." Spine 31 (6): 679 -- 681 PubMed. Health. Kyphosis Scoliosis http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002221/ http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002220/ Weiss HR, "Scoliosis-related pain in adults: Treatment influences," European Journal of Physical Medicine and Rehabilitation 3/3 (1993): 91 -- 94 Scoliosis Research Society website http://www.srs.org/ Online Etymology Dictionary http://dictionary.reference.com/browse/scoliosis Read the full article

[connectseo-blog]

Innovative Approaches to Muscular System Treatment with 3D Volumetric Analysis MRI

The muscular system plays a critical role in our daily lives, enabling movement, stability, and vital functions like circulation. However, injuries, disorders, and chronic conditions affecting this system can significantly impair quality of life. Effective muscular system treatment is essential to restore function and alleviate discomfort. Recent advancements, such as 3D Volumetric Analysis MRI, are revolutionizing diagnosis and treatment planning, offering precise and personalized care.

Understanding the Muscular System

The muscular system consists of three types of muscles: skeletal, cardiac, and smooth. Skeletal muscles are responsible for voluntary movements, cardiac muscles pump blood throughout the body, and smooth muscles manage involuntary functions like digestion. These muscles work in harmony with connective tissues, nerves, and blood vessels. Any disruption in this intricate network—due to trauma, overuse, or diseases like muscular dystrophy—requires targeted and accurate treatment strategies.

Challenges in Traditional Treatments

Traditional muscular system treatment methods often rely on physical examinations, X-rays, or ultrasound imaging. While effective to an extent, these techniques have limitations in visualizing complex muscular structures. Conditions like soft tissue injuries, myopathies, and nerve compression demand a more detailed and comprehensive view. Without precise diagnostics, treatment plans may lack the specificity needed for optimal recovery.

The Role of 3D Volumetric Analysis MRI

Enter 3D Volumetric Analysis MRI, a groundbreaking imaging technology that enhances the understanding of muscular structures. Unlike conventional MRI, this advanced method provides a three-dimensional representation of muscles, tendons, and surrounding tissues. It enables healthcare providers to measure muscle volume, detect abnormalities, and track changes over time with unparalleled accuracy.

This technology proves invaluable for diagnosing and treating conditions such as:

Muscle tears or sprains

Tendonitis

Chronic pain syndromes

Post-surgical rehabilitation

Degenerative muscular disorders

Benefits of Integrating 3D Volumetric Analysis MRI in Treatment

Enhanced Diagnostic Precision: The detailed imaging helps identify subtle changes in muscle texture, inflammation, or scarring that may not be visible through other methods.

Tailored Treatment Plans: By understanding the exact extent of muscle damage or degeneration, physicians can design therapies tailored to the patient’s unique needs.

Improved Monitoring: 3D volumetric analysis allows continuous monitoring of progress, enabling timely adjustments in treatment strategies for better outcomes.

Minimized Invasive Procedures: With clear visualization, unnecessary exploratory surgeries can be avoided, reducing patient risk and recovery time.

Future of Muscular System Treatment

The integration of 3D Volumetric Analysis MRI into muscular system treatment heralds a new era of precision medicine. Combining this technology with other innovative therapies like regenerative medicine, physiotherapy, and AI-driven analytics holds promise for better recovery rates and improved patient satisfaction.

As the medical field continues to evolve, the adoption of advanced imaging techniques will likely become a cornerstone of muscular system treatment. With early diagnosis and customized care enabled by 3D volumetric analysis, patients can look forward to faster recoveries and a higher quality of life.

Conclusion

The muscular system’s complexity demands innovative approaches to treatment, and 3D Volumetric Analysis MRI is a game-changer in this domain. By offering detailed insights into muscular health, this technology supports accurate diagnoses, personalized care, and better patient outcomes. For those seeking effective solutions for muscular disorders, embracing cutting-edge advancements like this can make all the difference in achieving long-term well-being.

[cripplecharacters]

Hi! Robot dinosaur in a wheelchair guy again!

I've done some research, and I was thinking of changing it up so that my character has an equivalent of muscle weakness from the hips down. I was looking into muscular dystrophy to use as a sort of framework for it, but all I've been able to find so far is stuff about the different types, that doesn't actually tell you a whole lot??

So do you have any resources or advice for writing muscle weakness and/or gradual muscle decay of the lower body in characters?

(By the way some things have changed since the last time I sent an ask, so if those ones weren't clear or coherent, I can definitely ask better questions now if that helps at all. Obviously you don't have to answer anything, and I'm not intending to rush you at all, I'm just aware I'm not always the clearest person in the world, and want to say I can definitely do better if so asked.)

Hi!

First off, we've all loved reading your asks! The idea of the robot dinosaur is super cool.

Onto your question: while I don't have an official diagnosis of anything, what you're describing is basically what I've been going through mobility-wise so I can give you some pointers.

In the past few years I went from relatively mobile to unable to walk more than a few steps unaided. I went from no mobility aids to full-time crutch use in under a year, and things are still getting worse without a known cause.

PT helped maintain some abilities, but didn't help build back any strength or mobility and ultimately just caused me more pain and flares, so I stopped going. I still use some of the exercises I learned there on my own.

It's honestly very frustrating to not be able to do things I know I used to be able to do. Stairs are especially horrible--I've never liked them, but I'm now not really able to manage them, and they are everywhere. (I can do a step up/down, and on my best days I can get about half a flight of stairs before I need a break.)

I've also been dealing with the fear of losing strength in my arms too. I injured my shoulder back in July and it was horrible. I couldn't bear weight on my shoulder very well, so I couldn't carry my bag or transfer weight/pressure to my crutches like usual.

In general, I have a lot of fluctuation in what I can do and how much pain I'm in day-to-day, which is not the case of everyone dealing with progressive disabilities.

As a dinosaur and not a human, your character will probably still want to use a wheelchair as a mobility aid. I imagine dinosaur crutches would be a bit difficult to manage.

Mod Rock

[sian4chatsworth]

Disability

The May issue of British Vogue, titled Reframing Fashion, features 19 disabled people from fashion, sport, activism and the arts. Five of them are cover stars: the actor Selma Blair, who has multiple sclerosis; Sinéad Burke, a disability activist and consulting editor for the issue; the models Ellie Goldstein and Aaron Rose Philip; and the American Sign Language performer Justina Miles. Since Edward Enninful was appointed editor in 2017, Vogue has performed a 180-degree turn: from pronounced, even defiant, homogeneity that was once its hallmark to a magazine at the frontier of what representation and diversity in fashion can look like.

Sinéad Burke

What inspired you to create Reframing Fashion?

Enninful: I met Sinéad when I started here, in 2018. We sat next to each other at the Burberry fashion show and, from that minute, I just knew we were going to work together. I said: “I’m going to take your lead, because you’ve lived it. And you continue to change people’s perspectives on disability.”

Burke: I sat next to him, tugged on his sleeve and said: “Hi, I think what you’re doing at British Vogue is incredible, but have you ever thought about disability?” Knowing that, of course, based on his own lived experience, that was always going to be part of the conversation. So, in 2019, I was the first little person to be on the cover of any Vogue.

Ellie Goldstein

Ellie Goldstein was just 18 when she made history as the first person with Down’s Syndrome to star in a luxury fashion campaign, but her determination to carve out a career in fashion came even earlier. She was only 5 when she decided on modelling. “I was walking up and down the living room at home like it was a catwalk and my mum said, ‘So, you want to be a model then?’ And I thought yes, yes I do.” Now 21, and having secured lucrative jobs for Gucci and Adidas, as well as multiple magazine covers, she prides herself on ensuring that the fashion industry can no longer ignore disability.

Ellie Goldstein, a British model with Down syndrome, agrees that “The experience was surreal and unbelievable.” Ellie, who has worked with a number of megabrands including Gucci, Nike and Adidas, is empathetic: “The world needs to see more models with Down syndrome. We need to be seen and represented. We are the same as everyone else.”

Aaron Rose Philip

In 2018, she became the first Black, transgender and physically Disabled model to be represented by a major modelling agency. In 2021, she closed the Moschino show, making her the first wheelchair-using model to be featured on the runway by a mainstream luxury brand. And, throughout it all, she’s fought for real change from the inside.

What does she want for her future? She pauses, smiles and then races through a plan: “I want to be on billboards in Paris, London, Milan and Tokyo. I want to do the whole four-city circuit, no matter how difficult it is. I want to have my own agency where I’m fostering and giving talent a loving space and home for them to be who they want to be. I want them to be seen. I want to be seen. I want my flowers.”

Jillian Mercado

Disabled model Jillian Mercado is shattering stereotypes left, right and centre. Jillian was diagnosed with muscular dystrophy during her teenage years. Despite this she has found her passion in modelling.

The petite model is currently represented by IMG Models and is one of the few professional models with a physical disability. Everyday Jillian challenges ideals and model stereotypes, creating a more accepting industry.

Her first campaign was in 2014 for big brand Diesel. Since then Jillian has done print work for Glamour Magazine and Cosmopolitan Magazine. But her quickest claim to fame would surely be modelling for Beyonce merchandise for her world tour in 2016.

Harvard Referencing:

Fig 1. LINDBERGH, P. (N/A) Image by Peter Lindbergh for British Vogue. [Photograph] Available from: https://www.sinead-burke.com [Accessed: 10th September 2023]

Fig 2. GUCCI. (N/A) Courtesy Of Gucci. [Photograph] Available from: https://www.harpersbazaar.com/uk/fashion/fashion-news/a42845628/ellie-goldstein-model-interview/ [Accessed: 11th September 2023]

Fig 3. MITCHELL, T. (N/A) Aaron Philip photographed by Tyler Mitchell for Vogue Italia, September 2020. Styling by Carlos Nazario, Hair by Jawara, Makeup by Raisa Flowers. Photographed by Tyler Mitchell / Art Partner. [Photograph] Available from: https://www.vogue.com/article/aaron-rose-philip-how-i-got-here [Accessed: 11th September 2023]

Fig 4. DIA DIPASUPIL/GETTY IMAGES. (2020) NEW YORK, NEW YORK - February 09: Jillian Mercado appears on the runway for The Blonds during New York Fashion Week: The Shows At The Gallery I at Spring Studios on February 09, 2020 in New York City. [Photograph] Available from: https://www.vogue.co.uk/arts-and-lifestyle/article/jillian-mercado [Accessed: 25th September 2023]

WILLIAMS, Z. (2023) ‘I have an invisible disability myself’: Edward Enninful and Sinéad Burke on their fashion revolution. [Online] Available from: https://amp.theguardian.com/fashion/2023/apr/25/i-have-an-invisible-disability-myself-edward-enninful-and-sinead-burke-on-their-fashion-revolution [Accessed: 10th September 2023].

FRASER, C. (2023) Reframing Fashion: British Vogue Celebrates Disabled Talent in Historic New Edition. [Online] Available from: https://tiltingthelens.com/2023/04/18/reframing-fashion-british-vogue-celebrates-disabled-talent-in-historic-new-edition/ [Accessed: 10th September 2023]

ALEXANDER, E. (2023) Ellie Goldstein: “Don’t ridicule people like me - take a risk” [Online] Available from: https://www.harpersbazaar.com/uk/fashion/fashion-news/a42845628/ellie-goldstein-model-interview/ [Accessed: 11th September 2023]

BURKE, S. (2023) Model Aaron Rose Philip Is On A Mission To Level Fashion’s Playing Field. [Online] Available from: https://www.vogue.co.uk/article/aaron-rose-philip-british-vogue-interview [Accessed: 11th September 2023]

DAWSON, N. (N/A) Top 10 Models Changing The Game. [Online] Available from: https://thephotostudio.com.au/all/inspiration/10-petite-models-changing-the-game/ [Accessed: 25th September 2023]

[disbabeled]

Stumbled upon this post while browsing the #disability representation tag so I'll give this an answer. For context, I'm physically disabled in several ways including a mobility disability (Which I use a cane for full time and have used a wheelchair in the past as needed) and low vision. My boyfriend is a full time wheelchair user due to paraplegia. I also help out on @cripplecharacters (Which is a great resource for things like this).

For the vast majority of your questions, the answer is that it depends on the condition that causes your character to use a wheelchair -- which is really something that should be figured out earlier. Using a wheelchair in itself isn't a disability -- it's the result of a disability.

A lot of people automatically associate wheelchairs with paralysis and while that's one disability that can cause somebody to use a wheelchair, it's far from the only one. Other conditions can include cerebral palsy (CP), amputations, spina bifida, muscular dystrophy, and several others.

The answers to a lot of the other questions are ones that can very easily be found by doing your own research. You can very easily look up something like "wheelchair accessible kitchen" or something like that and get plenty of results.

The questions you ask about what he can or can't do depend entirely on his abilities, what disability causes him to use a wheelchair, and what his environment/personality/other circumstances are. If he's paraplegic, for example, he may be able to easily transfer from his chair to the couch to a dining room chair. If he has a more severe form of CP, he may not be able to and would likely require more support. Likewise, if he's an ambulatory wheelchair user, he may not need a ramp at the front of his house but he likely would if he has some type of spinal cord injury. It all depends.

In terms of seeing his SIL in the hospital, that depends more on who he is and what his history is like. If he had a childhood with a lot of traumatic hospital visits then it might impact how he feels about seeing his SIL in the hospital. If he lost a close family member to cancer after a long battle in the hospital, that might impact it. But being disabled won't automatically make him feel differently about it.

It's the same kind of thing for asking for help. I personally rarely ask for help and prefer to do things myself because I find it incredibly irritating how people act when I do. If I'm with trusted friends or family -- or even just a classmate or prof that's proven to be cool -- I'm more comfortable asking somebody to open a door for me or grab my cane from where it's fallen. But that's because of me and my own personality. It has nothing to do with the type of disability I have.

Though it's great that you want to include more representation, it's really important to do more research and, specifically, to do your own research instead of just asking people for the answers. Doing so allows you to gain more insight into who your character is and how they navigate the world.

Hey, disabled Tumblr, can you help me out please?

In the YA book I'm currently writing, 1 of the characters is a wheelchair user. He's middle-aged, and a father of 4. He's been in a wheelchair for around 20 years. He lives in a mid-/low-income house, where he and his partner have raised their kids. All of their kids are grown adults. He and his partner both have jobs and their own income, and he does not have a live-in carer, though his partner helps with some tasks when he asks her to, and one of his sons stops by quite often (multiple times a week) to help out around the house.

1 of his youngest sons is Autistic, and his other youngest son is able bodied & most likely Neurotypical with some Autism traits, but ends up comatose after being hit by a car.

Here are my questions:

Is he in physical pain? (Are there conditions which can cause someone to need a wheelchair which consist of physical pain? What do these feel like? Do they impact how he uses his chair? Does he need medication for the pain, or the condition?)

How easy or difficult is it for him to move himself around - can he go from his wheelchair to the couch to his wheelchair to a dining table chair by himself? Is this taxing on his body or his mind?

What kind of accommodations will he have in his home?

Does the furniture have to be arranged a certain way to allow his chair to move around?

Same question for his kitchen - what's different in his kitchen to allow him full access and autonomy within it?

How should his son-in-law offer assistance? (In my current draft, SIL asks if FIL wants any help getting from his wheelchair to the dining chair, FIL tells SIL to wait a second then to take the wheelchair out of the way of the table. SIL finishes setting the table while FIL gets into the dining chair, then moves the wheelchair across the room, out of the way of anyone else walking past it to the table. SIL also helps carry dinner through from the kitchen while FIL gets the drinks.)

How would he feel about seeing his son in a hospital for long-term care? Would he feel differently about it than the able-bodied family members? Why? Would this difference impact his behaviour or responses?

Is there a reason he may (or may refuse to) ask for help or assistance with something which is directly impacted by his being in a wheelchair?

I have Aspergers syndrome, idiopathic scoliosis, hypermobiloty, Raynauds, and an undiagnosed connective tissue disorder, along with undiagnosed CPTSD, a history of eating disorders and a few various sensory issues. I am transgender, FtM. Within this book, I have representation of Autism in characters who are cosgender, transgender & gender queer, all of whom are at different points on the spectrum. I have representation of a child with severe PTSD and amnesia surrounding her trauma & life before it. I have a genderfluid character who uses he / she / they interchangeably, 1 polycule which includes a black man of mixed race who may be Scottish or Welsh by the time the final manuscript is done, and a fat Chinese woman who is either Welsh or Scottish. The protagonist uses he / they.

The fantasy elements in this book include shape-shifting, but shifting shape does not cure or fix a disability: if someone is am amputee, and they turn into a duck, that duck will have the same amputation. As such, there are depictions of various characters in shifted forms with prosthetics - a shoebill in a wheelchair with a prosthetic leg is one example of this.

There are also heavy features of Celtic folklore throughout the book.

[the-hotwheels-lesbian]

Ablebodied people, consider this... my wheelchair is a mobility device yes... but it can also double as a weapon.

This is how I will cure the ableism. Siri send post

[kosmo-mckogane]

i hate how they shoehorned shiro being disabled into the show for backstory drama, but then barely mentioned it outside of flashbacks and have him be cured by clone space magic. they weren't interested in writing a chronically ill character, they were interested in giving shiro more spicy angst

yeah lmao, they had 0 interest in actual representation at any point throughout, especially in terms of this. shiro's actual muscular dystrophy was only ever used for really harmful ableist tropes and then somehow "cured" in a really vague way by the same people who also imprisoned and tortured him, losing him a limb in the process, which was in turn only ever used for further torture porn, and this along with his ptsd (which was set up really well at first until like s2 lol) was all used to display how someone like him, according to what the show was putting across, could never really lead voltron or be a paladin or even be a real part of the team, since they pushed him aside in favor of someone able-bodied anyways. i mean. what the hell was that

[judiyassin]

Assignment 5 Submission

The photograph I picked to recreate is one taken by famous American photographer Sally Mann. It was published in 1992 as part of her well-known photographic collection Immediate Family and titled “Black Eye”, depicting Virginia, Sally Mann’s daughter, napping on a chair after a hammock accident bruised her eye (WCMA, 2018). The collection Immediate Family comprises a series of black and white 8x10 photographs documenting Mann’s three children growing up on their Virginia farmhouse across a 7 year span.

Upon publication, the collection immediately became a subject of controversy and faced significant amounts of backlash due to the nature of the images which frequently featured her children completely nude or suffering injuries like severe insect bites, bloody noses and black eyes. In fact, in 1992 following the publication of Mann’s collection, The New York Times published a cover story titled “The Disturbing Photography of Sally Mann” in which the author questioned the ethicality of releasing a collection of photographs of one’s naked children into “a world where pedophilia exists.” (Woodward, 1992). The long article also scrutinised the childrens’ ability to consent to the publication of these photographs taken by their mother whose role is to “protect [her] children from all harm.” (Woodward, 1992). While this article was fairly balanced in its criticism, others were not. Some people organised book burnings of the collection, accusing Sally Mann of sexualising her children and exploiting their distress in situations where they are hurt (Public Delivery, 2019).

Whether Mann’s work is actually an exploitation of her children and an abuse of power and trust is an often-considered question, however, this controversy can sometimes overshadow the other representations present in Mann’s project. Representations of the freedom of youth, representations of rural living, representations of the relationship between child and nature, representations of a maternal gaze and so on. What makes Sally Mann’s Immediate Family interesting, to me, is that it is characterised by an undeniable sense of intimacy and familiarity between artist and subject. This characterisation paints all of the photographs in the series with warmth and intimacy which can be felt in “Black Eye”. This feature is also present in some of Mann’s later works like her photographic documentation of her husband’s battle with muscular dystrophy.

Almost the entirety of Mann’s work is in black and white. In Immediate Family, this serves to provide the photographs with a more striking look. Mann stated that the black and white format “makes you get right to the essence of what you’re taking a picture of without getting distracted by the colour.” (Rose, 2015).

Sally Mann, along with being a master of the black and white format, is one of the greats in family photography mainly due to her work in Immediate Family. The collection was an all-round brave and bold publication which challenged societal perceptions as Mann argued that “childhood sexuality is an oxymoron.” (Levine, 2015). She also asserted that the nudity and injuries depicted in the work are simply a result of her photographing scenes “of children living their lives … of ordinary things every mother has seen.” (Public Delivery, 2019). The project serves as a demonstration of photography’s audacious, controversial and subversive role in history.

[reference list in document submitted to blackboard]

[humandiversity4]

DISABILITY - INFLUENCERS AND POSITIVITY

Aaron Rose Philip

Aaron Rose Philip is an Antiguan-American model. After starting her modelling career at 16 years old in 2018, she became the first black, transgender, and physically disabled model to ever be represented by a major modeling agency and has since modeled in several major high fashion photo shoots and campaigns. They are an inspiration to many and have motivated many individuals to go into the modelling industry such as Alexandra Kutas. “My goal is normalising the presence of disabled people, women/ femmes who are trans and gender non conforming trans people” “So that we can simply work, exist and be authentically valued in the high fashion industry and the world itself as a whole”.

Alexandra Kutas

Alexandra Kutas is the world's first runway model in a wheelchair, first fashion model with a disability in Ukraine, entrepreneur, a public speaker, and was an adviser to the mayor of Dnipro on the accessibility of urban infrastructure. Due to a medical error at birth, she experienced a spinal cord injury and has used a wheelchair from an early age however that did not hold her back. She was inspired by the work of British designer Alexander McQueen who used a model with a disability in 1999. At the age of 16 she was approached by a photographer who was amazed by her beauty and of course she agreed and fell in love with the process.

Debbie van der Putten 

Debbie van Der Putten is a Dutch model who works in the tourism industry. She is particularly known for her physical disability, after she lost her right arm above the elbow as a result of a bus crash in the south of France in 2005 and was a contestant on reality TV programmes such as the Dutch show Miss Ability and the BBC3 show Britain's Missing Top Model. “Since then I have fallen in love with the world of modelling. And I don’t just mean standing in front of any camera; I’m going for the top, not only for myself, but for all the young disabled girls out there. I want to represent them, make them feel pretty again and give the words disability and beauty another meaning”.

Jillian Mercado

Jillian Mercado is an actress and American fashion model represented by CAA Fashion. As a wheelchair user, she is one of the few professional models who has a visible physical disability in the fashion industry. Diagnosed with spastic muscular dystrophy as a child, she believes her interest in fashion originated from her mother, a dressmaker, and her father, once a shoe salesman. Mercado uses her platform to push for greater representation in the industry, saying in an interview “I just hope that underaged people see themselves in me, in any way possible”.

Jack Eyers

British Jack Eyers is a male disabled model and personal trainer who wears a prosthetic leg after having his leg amputated at 16 years old due to a medical condition. Jack claims that he considered himself disabled before having his leg amputated; after he got his prosthesis fitted he was free to do things that he couldn’t previously do. In 2015, he became the first male disabled model to walk in New York Fashion Week. He has also walked in London Fashion Week in the Teatum Jones A/W 17 show and was crowned Mr. England 2017, making him the first amputee to earn that title.

[squealchair]

my experience being disabled in a pandemic

On this National Rare Disease Day (and almost 1 year stay-at-home-iversary), I present to you all my very first blog post. (cue applause) 😂

Growing up, I was conditioned to be sorry for being different. From having paras in my classes because I needed extra help, to feeling isolated in the corner of the gym doing physical therapy during PE class, to when my friends’ stopped inviting me on social outings because they weren’t accessible. The switch flipped inside of me when I finally started seeing disability as something that was normalized, not shameful. It was, however, unfortunate that this moment came when the world was telling me the exact opposite. This is the story of how I learned just how much society hates disability, while at the same time learning to love it myself .

There’s nothing like a global pandemic to let you know where people’s priorities really are. And I’ve had basically a year to feel angry, depressed and hopeless about it. But it has also brought on the more significant realizations I’ve had about my life so far.

It all started March 12th 2020. My last in person class before the city’s (and my own personal) stay-at-home-order. This was a group project class which we would have to finish through clunky work sessions on Zoom. We got very little done that day. Our conversation went from lamenting the cancellation of March Madness, to passing around someone’s Bath and Body Works hand sanitizer in solidarity. Realizing we were all talking through our impending doom, my professor tried to make sure we were prepared to continue online for a while. I remember her echoing what many people were saying at the time, telling our group, “you guys are young, you don’t need to worry about it, just wash your hands.” It's just the older people who are dying from it, right? While this was the common way of thinking at the time, coming from someone who I’m sure meant well, I now have grown to hate this sentiment. And even more that I didn’t speak up and say something like, “well actually, I could die from it.” I was probably in denial, just like everyone seems to have been all this time. 

I was born with what doctors now clinically describe as distal Spinal Muscular Atrophy, although genetic testing done at the time did not confirm an SMA diagnosis  (gotta love a medical mystery). Whatever it is affects basically all muscles in my body, and led to several childhood battles with pneumonia from something as minor as a cold. And while I’ve come a long way since beginning my life on a ventilator, I can’t confidently say I would survive something as bad as COVID. 

So the next day, it was announced we would be going virtual for the rest of the semester. I watched as the County Commission debated if the lives of people like me are worth losing profits (which would become a conflict central to the world’s excuse to hate disabled people). Then we finished the semester, which was different, but the newness of remote life was kind of exciting at first, I must admit. That faded fast. But virtual world is what led me to what would be the beginning of my disability acceptance journey. 

Through social media, I found out that the team behind Crip Camp (a documentary about the disability rights movement I watched during the extended spring break) was hosting a virtual “camp” all summer. Every summer since I aged out at 17 I went to Muscular Dystrophy summer camp, and now as an adult I’ve been attending a retreat for those who age out every August. But since it was canceled this year, I needed something to do. So I signed up for Crip Camp: The Virtual Experience, a weekly series of conversations with disability advocates.

As it turned out, forming connections with disabled communities across the world was just the validation I needed. I started following disabled creators and making friends in social media groups too. And I found the representation that has never existed in the mainstream. I realized how much internalized ableism I was carrying from the world around me. That disability is not only your lack of ability, it's the lack of accessibility in society. What I realized was all the stuff I thought I had to apologize for, is really what makes us who we are. My disabled lived experience has shaped me into who I am today. Sadly, this came just in time for a dominant portion of society to try to rip that progress away from me. 

All this to say, it really hurts to know that a large part of the population doesn’t care if you die. But that's what I’ve spent my time in isolation coming to terms with. The fact that people are constantly educated about the consequences of their actions, but aren't willing to take simple actions to help slow the spread because it may not directly affect them, is what really gets to me. This even coming from people I considered friends. Don’t get me wrong, I am fortunate and thankful to live with my family and have the resources I need to survive the long haul. I’ve always known life was going to be hard as a disabled person in an ableist world. But having the collective disdain for us be thrown in my face with every Instagram post from a college party and Facebook conspiracy theory is a new level of disappointment. All that time I spent learning to love myself, clouded with reminders that maybe nobody else actually does. I wish there was more empathy in the world. 

This past year has exposed the sad truths in this country. Those in power really only care about their own interests, and a large portion of the population really wouldn't think twice about the lives of disabled people. Please take the consequences of your actions seriously, not only for me, but for the marginalized communities disproportionately affected by this tragic pandemic. And please get the vaccine.