Daily Disability Rituals

@krispykitty12

I don't have disability rituals. I have rituals as a person. And I am a person living with a disability. So I do things that other people do, I get up, I eat healthily, I exercise.

Things that I do that relate to my disability would include my work here in the disability community; I read articles from "The Mighty." I also spend time every day to learn about new research and information from practitioners who are at the cutting edge of health practitioner care.

I sleepwalk so I have to have a bed with high sides, and I don't sleep alone.

I'm a quadriplegic (C5 complete) so I make a lot of daily changes from a regular person I'll try cover most. I'll go through a regular school day and a few extras.

I have to wake up earlier than a lot of people considering I can't move most my body, my aide/caretaker usually wakes me up and helps me do basic morning things such as, using a hoist to get me out of bed onto either my power or manual wheelchair depending on how I feel that day, getting changed, brushing my teeth, making and eating breakfast.

Then I go to school, some days I have a helper go to classes with me helping me do things or picking up things I drop (I can drop a lot of things my arms and hands suck) others I don't have one and just enslave my friends.

Usually I leave classes 5-10 minutes earlier to get time to go to the next one as I'm obviously not that fast at it.

Usually in winter I actually bring a blanket to school on me as I can't control my body temperature and get cold incredibly fast.

When I go home my aide/caretaker helps me change out of my uniform into something lighter and helps me with other things.

At night my caretaker uses the hoist to put me back in bed and straightens out my body to avoid pressure injuries, they also get me water for the night kept in a bottle on a table that goes over my bed. Than they give me the remote for my bed allowing me move it up and down at the front so I can sit up and lay down at night.

The tl;dr: I can't move most of my body so I have a caretaker/aide help me.

I've been this way for so long I can't think what's "normal" and what I do differently. Everything is about balance and grounding. I stop to take slow, deep breaths before starting a task. I take breaks during a task to re-ground/re-center myself. I guess you could say I live a very old-fashioned Asian lifestyle, I learned in Japan. I can scoot on the floor and not fall down or drop things. Sometimes I have to give up everything and sit and mindfully meditate. Then allow myself to curl up on cushions and fall asleep for a cat nap. And not get down on myself for needing so much rest or failing at finishing tasks.

@krispykitty12

What do you have to change in order to fit your needs during your routine?

I have to make sure my environment isn't too overwhelming (in terms of sensory stimuli). I have to have my headphones with me at all times.

Do you even have a routine?

Oh, do I! My whole life is one big routine haha. I love routines. Even if it's how I make my coffee every morning and in which cup and at what temperature and how many sips. There's peace and comfort in routine!

How do these changes help you?

I follow routines to avoid negative feelings and meltdowns :)

How do they make you feel?

Oops, I mentioned this above ^ peaceful, and comforted.

@krispykitty12 Did an amazing job on this post. I know how hard it is to live with a disability. I have a learning disability. Thanks for sharing.

I don't really have a routine, most things are done for me. Things that are different is that I sleepwalk and have to sleep in a safety bed, and I have a sensitivity to sunlight hurts my head, so I don't go out alot.