As many of the disabled community know, having a chronic, debilitating illness creates layers upon layers of social issues which are often ignored. In this video, I address the loss of one's autonomy and the introduction to how one can begin to regain it with simple, joyful actions.
For those of you who are meeting me for the first time, hiya! Pleased to meet you! I hope we can be friends, and I look forward to getting to know you. This project I started almost two years ago now, Frill-Ability, is a growing a resource for the disability and chronic illness community on the web (and soon to be, more!) who are interested in adaptive living. It is a reminder that life doesn't stop when our abilities change. We modify and we enhance, and Frill-Ability is here to encourage along the way. We promote compassion, self-love, and a healthy dose of frills to make life refreshing.
Scroll down past the transcript that is here for our deaf and hard of hearing viewers to find out where you can find Frill-Ability across the web!
(sung by ElleJay)[Sit right down! It's time for a video! Please enjoy the show!] (ukulele strumming fades)
Hey my sparkly friends, it's ElleJay from Frill-Ability.com. We're going to be talking about agency today, so we're going to put on our serious hat for a little bit.
Agency. If a person is white, able-bodied, and cis, they have likely never worried about it. Take away one of those and insert an oppressed, minority group, and they very well might have. Perhaps the definition is unfamiliar.
It is an odd concept to consider. As a disabled person, I regard it frequently without forming the word. Agency can be lost like a large amount of change in a torn pocket. The hole is small, but coin by coin, change drops out, scattered on the pavement. Eventually a person will not have enough to take the bus, buy food, et cetera. (This a world where coin is a higher value currency, like Australia or someplace magical with maybe smaller spiders.)
Money, theoretically, enables people to make choices. (If you have a lot of it, maybe you don't think about it everyday.) Without it, they are reliant on others. (...or worse.) Imagine the following:
You lose a coin when you cannot leave your house because you are a wheelchair user, and your chair-lift only takes a person up the outside steps, not a wheelchair. There are days you feel well enough go outside. However, you are physically prevented because you cannot carry your own chair or walk for more than a couple minutes. You miss out on breathing fresh air, meeting friends, and going anywhere other than your house.
You lose a coin when the people you love stop coming around. Your days are filled with quiet, the nights with silence. The reasons are varied, but they equal to the same thing. Your illness is now uncomfortable, and they will not transition with you.
Coins trickle through the hole with thoughtless, cruel, and pervasive questions from peers. Lost jobs and opportunities. Buildings you cannot enter. Every task someone must do for you or that they insist you cannot do. Doctors who have God-complexes, risking your life. The countless times you have been injured due to inaccessibility. Everyone who thinks it is not worth their time to learn, doesn’t care, or directs their hatred towards you.
Every time these things happen, you temporarily lose your ability to make your own actions and choices. The word of importance is “temporarily.” It is impermissible for one to force their will on another. Our best defense to the people who would not consider us is to create our own sanctuaries. It is time we earned back our salaries.
Bring yourself your version of beauty and function. Separate yourself as best you can from what is not. Why is this so effective? When you have things that work for you that are also helping you thrive, you will glow, wealthy with happiness. You will gain back that strength, that you-stuff that was stolen. When you are met again with a “foe,” you will have sewn your pocket shut. You will have your agency.
This takes time. I know I am still transforming. I can tell you that the “me” I was last August is a markedly different person than who I am now. It took therapy, reflection, patience, self-love, a bunch of bumps along the way, and a whole lot of fighting for myself.
I created Frill-Ability.com, an adaptive lifestyle blog, as a destination for others like myself with the message, “Make Good with Your Ability Today,” because we can always be marvelous with what we have. Life doesn’t end when disability starts. Put on something handsome today, find your favourite thing, and do something meaningful. I believe in you, and I believe in me.
Sending you lots of love and light. Bye bye!
(sung by ElleJay)[It's the end of the show, the end of the show./We love you very much, but it's really time to go./Get off of your computers, and go outside,/Or make a "Nature" board on Pinterest; it's the next best thing./The end of the show, the end of the show...](ukulele strumming fades)
Find me and Frill-Ability at…