Arthrogryposis

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    Savage x Fenty Campaign Reminds Us Not to Tokenize Disability

    Rihanna is known for including models of all genders, skin tones and body types in ad campaigns for her Fenty brand and has even hired models with disabilities for the Savage x Fenty fashion show Now she’s hired a model with limb differences whose photos have been widely circulating in the media. Fenty model Lyric Mariah Heard has amniotic band syndrome, which occurs when the bands that protect fetuses as they develop wrap around the limbs. Heard has only three fully developed fingers and wears a prosthetic leg, and her hands are on full display in the latest Fenty promotional photos, in which she poses confidently, hand-on-hip. Heard’s appearance as a Fenty lingerie model is a representation win, not just for those living with amniotic band syndrome but also for anyone with conditions affecting their hands.  Seeing Lyric confidently strike a pose with her limb differences in clear view could help people with disabilities like arthrogryposis or cerebral palsy who may feel self-conscious about their hands finally see themselves as beautiful and worthy of media representation. But while Heard can certainly resonate with people with disabilities, her solo presence in the photos (and the media buzz surrounding Rihanna’s decision to hire her specifically) could ultimately tokenize her disability. Her rising popularity as “Fenty’s limb-different model” comes at a potentially dangerous cost — being seen almost exclusively as a model with limb differences instead of just another model. Although there are times when emphasizing disability is extremely important, people with disabilities who face tokenism may struggle to balance their disability identities with the other ways they identify. Disability tokenism also wrongly suggests that disability is one-dimensional and that people who are publicly disabled or advocate for the disability community only care about disability issues when the reality is that there’s so much more to a disabled life than disability. If Heard ever opts to downplay her disability identity or bring other identities to the forefront, it could be especially difficult to do because her reputation as a model with a disability now precedes her. Fenty’s decision to hire Heard for their latest campaign makes the model — and her disability — stand out, but in order to normalize disability in the modeling world, they need to continue hiring disabled models and including them naturally alongside able-bodied ones. Hiring disabled models for a campaign is an excellent gateway to better disability representation, but to consumers who rely on buzzy headlines instead of fully researching the brand’s history, it may appear to be a decision to include a “bare minimum” level of ability diversity. While Heard’s presence in this campaign is necessary and a vast improvement over similar ads that don’t feature disabled or limb different models, it’s just one necessary step towards a much larger overall goal — to include models of all abilities in photoshoots and advertisements as often and seamlessly as possible. Lyric Mariah Heard’s inclusion in promotional materials for Rihanna’s Fenty line is groundbreaking for people with limb differences and disabilities affecting their hands, but it shouldn’t be regarded as an “end point” for disability representation.  People who’ve felt self-conscious about their hands and legs are finally seeing them normalized in the media, but the buzz surrounding just one of Fenty’s disabled models could tokenize her.  Fenty remains a step ahead of many other brands in terms of disability inclusion, and they should continue on that trajectory — the modeling world doesn’t typically prioritize disabled models, and the disability community deserves more.

    Arthrogryposis Made Me a Medically Rare Rose That Grew From Concrete

    What’s it like to be the medically rare girl? What’s it like to be the girl who needs spine surgery after already surviving 30+ surgeries in her 28 years of Iife? Well, there’s nothing basic Betty about me and I’m definitely not another carbon copy Catherine. I’m not rare like a diamond. Instead, I’m rare like those once in a millennium hurricanes. I’m a force to be reckoned with. Strangers see me as vulnerable and fragile, but the people who truly know me know I’m anything but a delicate flower. I may be a flower, but not a delicate one — I have too many thorny scars from the pain I’ve survived. Each thorny scar is like a roadmap of surgical experiences and other injuries that could’ve killed me. But they didn’t because I always pick up the pieces. I do feel pain, but by God, I’ll never show it to the outside world because I feel I must embody the grit of inner strength at all times. I’ve never known a pain-free life, so the pain becomes an inner competition to hopefully beat one day. You see, it’s like a mental war when your own body has betrayed you on a path to self-destruction. Every single day I push my pain tolerance to the limit and I do it with my famous dark sense of humor. I survive each new surgery with the music from my ever-growing surgery playlist on Spotify. I like my music like I like my internal hardware: hardcore metal. Play Taylor Swift and find out how swiftly I can awaken from my newly sedated self to rip the anesthesia mask from my face. I will only go out like a light under strict terms and conditions that don’t include pop music. I’ve got high walls built around my emotions, which can be both a blessing and a curse. I do cry occasionally but I never let others see my vulnerability. I don’t want their pity, but I also keep people at a distance so it won’t be nearly as painful when I have to watch them walk out of my life. I know I’m “too much” for most people and I’ve been abandoned by those who should’ve been there or promised to be there when I needed them the most. I keep my inner circle small for this reason. I joke all the time because it’s the only way I know how to cope. Laughter really is the best medicine, right? Fear not that you will offend me with disabled jokes, because I’ll laugh like a damn hyena at them. Being physically disabled from birth is like being reincarnated into a senior citizen’s body! Like what the hell? I believe you’re doing life wrong if you don’t see the dark sense of humor in physical disabilities. I laugh because I know life is too short to not laugh at its bullshit. I’ve had too many near-death experiences and I’ve survived when the medical “experts” claimed it would be impossible. My stubbornness can irritate my loved ones but they know not to hamper it, because my stubbornness is the very factor that allowed me to be the rose that grew from concrete. If you truly want to see me thrive, watch a team of doctors tell me that I can’t survive. The doubters don’t diminish me; they ignite my inner fight to soar above the flames that surround me. Don’t believe a rose can grow between the jagged cracks of concrete? Watch me not only survive but also thrive in the worst of circumstances. I have survived but not without the thorns of scars. Also keep in mind, I don’t want to be your “inspiration” because Mother Theresa would be rolling in her grave if everyone aspired to be like me, the “foul-mouthed crippled catastrophe” from the coast of NC. The medically rare girl doesn’t want your pity. You can shove your pity and doubts where the sun don’t shine because nobody overcomes 30+ surgeries at a pity party with the Debbie Downer of doubts.

    Community Voices

    Exercising

    Anyone have a good fitness program aside from their PT/OT?

    #Arthrogryposis

    Laura C. Robb

    Save Money Without Losing Disability Benefits With an ABLE Account

    Imagining possibilities is a normal part of life. It’s exciting to dream, plan, and watch goals turn into reality. I have an ongoing list of places to go and dreams to do… one day. Being born with arthrogryposis means I’m instantly limited, but my physical disability has also allowed me to become a creative problem-solver. How can I pursue my dreams? How do I make any dream an achievable goal? As I create a plan, I think about whatever physical assistance I will need. But that’s not the only obstacle I face. Financial limits can be an additional obstacle. Fortunately, ABLE accounts are removing many of these barriers. With ABLEnow, I have the option to save and make dreams happen over time. This means my “one day” can start now. This summer I already checked off an item on my list. I went on a road trip with my parents. We drove many miles to a conference and took a few scenic detours along the way. For one of our detours, we visited Niagara Falls. The savings in my ABLEnow account came in handy, as I was able to use my ABLEnow Card to pay for an accessible parking spot. Now that I’ve finished my trip, I’ve started to think about a number of other ways I can use my ABLEnow account throughout the summer season: 1. Travel dreams 2. Conference costs 3. Transportation fees 4. Medical bills 5. Educational goals I might need to cover the extra expenses of a trip and plan for an attendant to travel with me. Or I may need to pay for health-related appointments not covered by insurance, such as the dentist. Maybe I can put some of my savings toward my educational goals, so I can begin classes to further develop my skills. ABLE accounts empower people with disabilities to save for today’s needs or invest for tomorrow in a simple, affordable and tax-advantaged account that won’t impact certain disability benefits such as Medicaid and Supplemental Security Income (SSI). Since many ABLE-eligible individuals are not aware of this important new financial tool, I am working as an ambassador for the ABLEnow program to help spread the word. Whichever dream I chase next, ABLEnow can help. Goals are achievable in all seasons. Dreams are possible for everyone.

    Community Voices

    Mac’s Guide to AMC

    Today is June 30, which for people like myself is a very special semi-holiday known as AMC Awareness Day! But you knew that, right? Of course you knew that today people across the world are posting pictures of themselves in blue to show support for my disability, right?
    Okay, I’m being sarcastic. There are indeed many people wearing blue today, some for AMC, but I know there’s a lot more who have no idea what I’m talking about. And that’s perfectly okay! It’s impossible to know about every disability and how to best show your support. But as someone with AMC, I can’t help but try to let as many more people as possible know what it is. So prepare yourself, reader, to become a more educated person!
    AMC stands for Arthrogryposis Multiplex Congenita, which essentially means “born with curved joints” in Greek. So that part is pretty self explanatory. But because AMC isn’t really diagnosis in itself, it’s more like a group of symptoms that can be caused by something else, there are a lot of different types of Arthrogryposis. The type I have, Amyoplasia, is most common with about one in 10,000 live births. For any type of AMC, it’s about one in 3,000 live births.
    Since Amyoplasia is a condition I’ve lived with all my life, I’m going to focus on that for this article. I’d really hate to give out any misinformation about another type, and sometimes no amount of internet research can keep that from happening. So with the basic idea of Arthrogryposis in your head, here’s a few facts about Amyoplasia that I feel are important:
    1. Amyoplasia isn’t genetic. It’s caused by a lack of movement in the womb, which in itself can have a lot of different causes.
    2. Curved joints aren’t all. Underdeveloped muscles, club feet, limited range of motion, soft skin, fused or stiff joints, and thin bones are some of the other symptoms.
    3. I have AMC in all four limbs, but that’s not the case for everyone. Sometimes only one or two limbs have all of their joints affected, while the others are normal or have less severe contractures. It all depends.
    4. Amyoplasia isn’t really something that can be cured, but it can be treated. Splints, physical and occupational therapy, assistive technology and sometimes surgery can make a world of difference in what people with Amyoplasia can do.
    5. Everyone is different. Because it can have so many causes, and affects different joints and limbs to different degrees, no two cases of Amyoplasia will look exactly the same. This is why it’s important to remember that none of us are experts just because we have this condition, and so we can’t speak for the whole Arthrogryposis (or even Amyoplasia) community. Myself included.
    So that’s it for today! I hope my guide wasn’t super boring, and thanks so much for reading! Thanks also to anyone wearing blue for us today, or who took the ArthroPIEposis challenge this month! I’ll post my picture later today. #ArthrogryposisMultiplexCongenita #Arthrogryposis #Disability #Selflove #CheerMeOn #DisabilityAdvocacy #MyCondition #AMC

    Community Voices

    My Dad’s Advice on Finding Love

    This might be unusual for a teenage girl, but I don’t hate my parents. In fact, I’m really close with my Dad. We talk openly about everything, and unless I’m actually putting myself in danger, he won’t judge me or tell me how to live my life. He always says I need to be independent and make my own decisions, and as long as I’m happy, he’ll support me.
    I’ve not felt the best the last week or so, and with my mom out of town, we’ve taken this opportunity to just chill and watch movies. So far, we’ve seen The Shape of Voice and The Professional, both of which deal with unique and unorthodox relationships. So we were talking, reflecting, and we got off on a tangent about the difference between what’s healthy and unhealthy.
    Partly because of my disability and also because of the awful situations my parents grew up in, I’ve been worried about my future relationships. To be specific, I’m afraid to end up with an abusive partner. I opened up to my dad about it tonight, and here’s what he told me:
    “Don’t get desperate, and don’t feel like you have to put up with behavior that makes you uncomfortable. If you don’t like it, walk. Getting married isn’t some box you have to check to be a successful person, so don’t feel pressured to stay.
    Learn to be happy with yourself. Love yourself, and if you don’t feel like you need someone else to complete you, you’re more likely to choose someone for the right reasons. As cheesy as it sounds, it’s scientifically proven that you’ll be happier if you just find your soulmate.”
    Pretty good, right? I promise, not all our ramblings sound this poetic. This just felt special though, and it seems like good advice, so I figured I’d share.
    #Disability #Arthrogryposis #ArthrogryposisMultiplexCongenita #Anxiety #Parenting #Selflove #Relationships #Love

    2 people are talking about this
    Community Voices

    Escaping the “Spiral”

    I had kind of an argument with my dad just now. He wants me to post my writing so i can get my name out there, at least let the world know I exist. If you read my last post, you know I’m trying. But whenever I try to write what’s in my head, I start second guessing myself, over-analyzing what I’m putting down, and soon I’m thinking about my personal flaws and how I’ll never be good enough. Then I just give up on it. I call the thing in my head, which I’ve recently been told is my anxiety, the spiral, after the way it keeps pulling me deeper and deeper and never ends. I think I might’ve stolen that name from Turtles All The Way Down, but it works and I’m keeping it.
    I’m only just now learning how to escape when it pulls me in, and here’s my personal trick for escaping the spiral when I’m trying to write: I don’t read it. I type continuously without giving myself much time to think about the next word, just like I’m talking. Watching they keyboard and focusing on the letters helps keep it from getting overwhelming, too.
    My only published work is the guest blogger articles I write for a summer camp, and this ‘write like I’m talking’ method has really helped me get more written. Because the camp is for people with disabilities, it’s been a really great place for me to discuss my experiences with my Arthrogryposis, and sometimes anxiety and mental health things too. They’re pretty well known and do a lot of different things throughout the year, so I’m really grateful to be writing for them. It gives me the opportunity to write things that matter, and still get the exposure I need.
    Anyway , I got off-topic. But if anyone else has this problem writing with anxiety, maybe this method could help? I know it probably won’t work for everyone, and I might not be explaining it very well, but I just wanted to share. Happy summer!
    #Anxiety #Arthrogryposis #ArthrogryposisMultiplexCongenita #Writing #smallvictories #CopingWithAnxiety #WritingTips

    9 people are talking about this
    Community Voices

    Anyone out there??

    Hi, I’m Mac. I’m a nerdy teenage girl with a physical disability called AMC, along with anxiety and depression. This intro is probably going to be way more informative than you need it to be, and I apologize in advance, but I really just gotta put SOMETHING here, so whatevs. I’m just going for it.
    So, I’m a really social person. I like, NEED people. But every summer I do this thing where I completely withdraw from everyone. I don’t really have the type of friends that text first, except for one, and so it just doesn’t happen. I don’t know why I do this, maybe I just figure I’m gonna get no response anyway. Idk. But basically I figured if I had someone who kinda GOT all the disability stuff, and the mental health, maybe I would actually feel fulfilled in a friendship?
    I can’t promise I’ll text right back, or come visit you, or call you every night. But I WILL be the best friend I can be, and I’ll have your back, and I’ll cheer you on, and if you ask me to I will drive my wheelchair straight over those haters’ toes. (Even though I’m anti-violence and I’d probably have an existential crisis over it later.)
    This has been the worst year of my life, and for once, no amount of John Green books, Square Enix games, and workout sessions could fix it. But I think having someone to go through it with might at least make me feel something. So, is anyone out there?
    I’ve been trying to think of something to say here for months, but I’m tired of letting my anxiety hold me back. So even if this is the most cringeworthy post on The Mighty, at least the internet like, knows I exist.
    #CheckInWithMe #Disability #Arthrogryposis #Anxiety #Physicaldisability #Wheelchair #Loneliness #Selflove #Friendship #Depression #LGBTQIA

    27 people are talking about this

    Ryan Hines Creates Bear Paw Self-Feeding Device for Disabled People

    All Ryan Hines wanted to do was eat his midnight snack without a struggle. Hines has arthrogryposis – a condition which causes underdeveloped arm and leg muscles, incorrectly formed joints and a limited range of motion. That night, as he fought to get his cereal out of the cup, an idea popped into his head. What if he could put a spoon on the top of an elevated device near his mouth? A device that could swivel around, allowing Hines to easily take a bite of his food and then turn around to pick up the spoon for another bite. With this idea in mind, Hines used his background in drafting and design to create a prototype that would then become Bear Paw – an affordable self-feeding device for people with disabilities. “The Bear Paw self-feeder is important to the very small portion of the community who can’t use their hands well enough to feed themselves and the caregivers who feed them,” Hines told The Mighty. “To me, having to be at the mercy of another, being reliant, almost feels being lesser – regardless if the person you rely on is a loving family member or spouse. There is something almost deprecating about not having independence.” Bear Paw has a simple base with suction cups that ensure the device stays put on the table. It uses two magnets – one so it can swivel and the other to hold a spoon or fork in place. “It is designed for the user to grasp a utensil in their mouth at the handle, scoop food from a regular dish, place the utensil on the device, swivel it around, and take a bite,” Hines explained. According to Hines, Bear Paw is the most affordable and simple self-feeding device on the market. Bear Paw retails for $150 and is designed with an adjustable shaft so the device can grow with you. “Other products on the market that accomplish the same end result are, to be completely fair, easier to use,” Hines said. “But the drawback is they are 30 times more expensive and they won’t last nearly as long as the Bear Paw. How many disabled people, considering most are on fixed incomes, can afford a $4,500 device that will probably break down in a few years?” So far, Hines said, the feedback for his device has been overwhelmingly positive. “I was fortunate enough to be in the right circumstances to hand deliver the very first one I sold,” Hines said. “The buyer was a mother with a daughter who has the same condition I have. We got together and the little girl was able to feed herself ice cream for the first time in her life. It was an amazing experience for everyone involved.” For Hines and his customers, Bear Paw provides an indispensable service. “The Bear Paw may not be a million dollar idea but for the few who can gain independence from it, it’s priceless.”

    Priorities USA Action TV Ad Targets Donald Trump's Views on Disability

    A new political ad airing on TV in battleground states is taking aim at presumptive Republican presidential nominee Donald Trump’s treatment of people with disabilities. The 60-second spot is being aired by Priorities USA Action, a political action committee that endorses Trump’s Democratic rival Hillary Clinton, and features Chris and Lauren Glaros, a couple whose daughter Grace was born with spina bifida. In the ad titled “Grace,” the Glaroses are shown discussing life with their daughter before the video cuts to the once-viral clip of Trump mocking New York Times reporter Serge Kovaleski, who has arthogryposis, a condition that impairs his arm movements. “You ought to see this guy,” Trump is shown saying of Kovaleski, whom he met a dozen times in the 1980s as Kovaleski covered his business career. In the clip, Trump widens his eyes and splays his arms, seemingly mimicking Kovaleski. In the ad, Chris and Lauren Glaros are seen reacting to the CNN footage interspersed with their comments. “The children at Grace’s school all know never to mock her,” Lauren Glaros says in the ad. “And so for an adult to mock someone with a disability is shocking.” “When I saw Donald Trump mock somebody with a disability, it showed me his soul,” Chris Glaros added. “It showed me his heart. And I didn’t like what I saw.” Priorities USA Action, which previously aired two spots attacking Trump’s stance on women, will run the Glaros ad in states such as Ohio, Florida, Virginia, Nevada, Iowa and New Hampshire, according to The Los Angeles Times. “Voters’ knowledge of Trump is a mile wide and an inch deep. As a result, the most devastating attacks against Trump are with the very words that come out of his mouth,” Justin Barasky, communications director of Priorities USA Action, told The Mighty. “We’re still early in our paid media campaign that will ultimately reach millions of voters on a great number of issues that highlight his divisive, dangerous record.” What’s your take? Let us know in the comments below.