#muscular dystrophy
Caption by mutant_robot on Instagram:
taxes. [image: taken from my viewpoint so that arm and joystick of my powerchair are visible. Across from me is a desk with papers and the keyboard my tax advisor is working at]
Please submit photos, videos, illustrations, visual posts that show your real life, every day experience of the world as a disabled person. Whatever that may be! It can be anything from mundane every day things, your fashion, your selfies, your food habits, the things you enjoy doing, to the adventures you go on, basically anything anyone would ever share about themselves. It doesn’t have to be a 100% positive experience, though, as that is not real life. Any emotion, any experience. I’m interested in presenting what it is like for disabled people to live their lives.
Photos, videos etc. should probably include you, a part of you, or your actual Point of View to be a true depiction of you and your experience. They should also be clear, the subject matter should be recognizable, and relatively interesting to look at (if not downright hilarious commentary on the mundaneness of living life as a human being). If we want this project to make a difference it should be something that all kinds of people want to look at.Let’s burst out of our echo-chamber and refuse to be ignored!
Whatever else, you should be presenting yourself and your experience how YOU want to be presented. This is about both education and empowerment. I’m not here to dictate how you depict your life and what “Disability Is Normal” means for you.
No photos or videos of disabled people that are not you, please, unless it is a group shot that includes you and you are also disabled.
If you know a disabled person who wants their experience to be shared as part of this project please have them submit. If they are not physically able to submit, then please message me with a copy of their explicit consent - this would be either in physical signed form (a photo of a signed note), a video of them consenting, or a voice recording. A simple YES answer to a ‘do you want this to be shared on Disability is Normal’ - a physical nod, or thumbs up etc. is good enough for me if the person is non-verbal.
I want to try and be inclusive as is absolutely possible, but this is a place for us to be represented exactly how we want to be. These are our voices!
This is a project for all disabilities, all genders, all ethnicities, all skills, all lifestyles, all perspectives, all social classes and all disabled experiences. We are numerous, we are everywhere and we WILL be acknowledged <3
(viahttps://www.youtube.com/watch?v=cCv3LLu3yUs)
My newest youtube video is up! Snacksidents:My version of a food adventure.
I had so much fun making this one, for obvious reasons. I swear I will get less awkward soon!
Features Lucky’s Doughnut’s limited edition Sakura Doughnut… It was the best doughnut of my life so far. It’s over now and just thinking about that brings a little tear to my eye *sniff*.
Click the youtube link for a better description than this, closed captions and 1080HD viewing. Optimized for headphones!
[thumbnail image description: a composite of Cherry blissfully biting into a beautiful looking doughnut with their eyes closed. Over-layed is text with the title: Snacksidents Sakura Doughnut in a peaceful blue-green with a picture of the really cute pink box the doughnut came in. The box is bright pink, says Luckys and has cartoon cherry blossom flowers. In the background of the composite is a tray of Lucky’s famous fritters]
Please submit photos, videos, illustrations, visual posts that show your real life, every day experience of the world as a disabled person. Whatever that may be! It can be anything from mundane every day things, your fashion, your selfies, your food habits, the things you enjoy doing, to the adventures you go on, basically anything anyone would ever share about themselves. It doesn’t have to be a 100% positive experience, though, as that is not real life. Any emotion, any experience. I’m interested in presenting what it is like for disabled people to live their lives.
Photos, videos etc. should probably include you, a part of you, or your actual Point of View to be a true depiction of you and your experience. They should also be clear, the subject matter should be recognizable, and relatively interesting to look at (if not downright hilarious commentary on the mundaneness of living life as a human being). If we want this project to make a difference it should be something that all kinds of people want to look at.Let’s burst out of our echo-chamber and refuse to be ignored!
Whatever else, you should be presenting yourself and your experience how YOU want to be presented. This is about both education and empowerment. I’m not here to dictate how you depict your life and what “Disability Is Normal” means for you.
No photos or videos of disabled people that are not you, please, unless it is a group shot that includes you and you are also disabled.
If you know a disabled person who wants their experience to be shared as part of this project please have them submit. If they are not physically able to submit, then please message me with a copy of their explicit consent - this would be either in physical signed form (a photo of a signed note), a video of them consenting, or a voice recording. A simple YES answer to a ‘do you want this to be shared on Disability is Normal’ - a physical nod, or thumbs up etc. is good enough for me if the person is non-verbal.
I want to try and be inclusive as is absolutely possible, but this is a place for us to be represented exactly how we want to be. These are our voices!
This is a project for all disabilities, all genders, all ethnicities, all skills, all lifestyles, all perspectives, all social classes and all disabled experiences. We are numerous, we are everywhere and we WILL be acknowledged <3
Please reblog, follow, boost and tag with your disabilities! Let’s get this off the ground - we can only do this together!
If you’re not disabled, please also consider boosting and following! Posts are queued at no more than 4 per day, will be absolutely personable, real, enlightening and interesting. Some posts may even hit your aesthetic tastes or personal interests! (;
By the end of yesterday’s two hour shoot the muscle weakness I suffer from was manifesting clearly. In my face, in my feet that would not pick up from the floor, in my arms that shook as if 50lb weights were hanging from my wrists. I know I ‘overdid’ it when muscle weakness persists into the next day, as does the unignorable pain that indicates cellular dysfunction. Today I can barely move from where I sit to the bathroom when I need to go. I cannot sit upright without total support of my body, my limbs and my head. I’m unable to separate my arms or hands from my body as I type this; only my fingers themselves are mobile. The searing burn in my upper arms and hands as I haltingly and weakly stab across this tablet’s touch screen keyboard is deemed 'exercise intolerance’ in medical terms. I dislike this term and find it misleading. Most people would describe exercise as a workout, or at the very least a good paced walk for a few miles. But, as with many words, what have one meaning in common lexicon will have another entirely in medicine. 'Exercise intolerance’ is a broad term with much variance in application among disease processes. For me, it relates to the muscular and cellular dysfunction I experience.
Today, just 2-3 chews on soft bread or a hand to my neck to scratch elicits a lactate burn from the pits of hell in the deepest depths of the muscles that are trying to activate. Many will be familiar with a mild form of this burn: usually as a result from running too hard, too long, or really, too much of any intense exercise in too short a period of time. It is, after all, a natural process. Some even pride themselves on this burn; it’s an indication for them that they are working hard. Lactic acid is a byproduct resulting from mitochondrial cells (energy production cells) using alternate forms of fuel when the correct sources are depleted. It is backup processing. This waste product causes pain, but in nearly all human beings this lactic burn will resolve within a couple of minutes to an hour once the exercise is stopped. (Other forms of muscle pain are different and likely a result of small tears, so take longer to resolve).
As long as I’m able to remember I’ve experienced lactate burn from as little as good paced walking, any amount of running, or even any kind of yoga or other mild activity. Now, as my conditions have progressed, the fiery pain manifests from even the simplest of daily activities; brushing my teeth, cooking, walking even 100m, propelling my wheelchair. It can last for days if I don’t get the correct nutrition, hydration, have trouble getting enough oxygen, don’t sleep enough or deplete my energy stores too rapidly or for too long a time. This is the price I pay every day now. Related, but different is the muscle weakness; the only outwardly visible sign that anything is malfunctioning.
I’m utterly exhausted writing this. I have to rest, but I want to thank you all for the supportive comments, the messages, the love. I have a hard time replying consistently for obvious reasons, but I read everything and I thank you. For watching, for reading, for learning, for your support.
{please don’t remove my words}
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