Superhero Machine Feels

I was in a pretty depressive funk recently about my body and disability, about how i’m never going to get better, about how my legs hurt all the time, about how I’m always tired, and you know we live in a world that tells us the way to deal with these feelings and issues is to Think Positive! Dont Let It Get You Down! Look at this person who has a disability that is nothing like yours but who can do this thing you can’t! And like we know, or we should know that it’s crap but we are saturated by insidious drip feeding in regards to disability and how people should feel and react to their disabilities.

So for a while I was asking myself how to feel better about my life, my body and something clicked in my head and i thought “fuck it what I really need is a wheelchair” it was kind of both a slow burn and and instant realization.
I’ve been thinking about my body a lot lately, about its fatness, its disability, its visible queerness

I’ve been trying to work out how to improve my relationship with food without thinking about it as losing weight or changing my body to fit mainstream beauty standards, or triggering my disordered eating. I asked around and one of my friends lent me “Lessons from the fat-O-sphere” and I liked it a lot and it has helped me with my food issues but it totally, unexpectedly helped me with a lot of my other body issues, because it’s basic message is “your body is ok, you don’t have to apologize for it.” For the first time I felt that I don’t have to feel that it should be smaller, less clumsy, more feminine, have more energy, do all the things bodies are “supposed” to be able to do both physically and socially. I thought I was living as if I believed that but I’ve always felt “Too Much” Too queer, too crippled, too clumsy, too socially awkward, too sick, too crazy, too ungrateful. But this book made me realise that it’s okay to be as I am and that includes using any kind of mobility aid i need to help my life work the way I wanted regardless of what anyone else thinks about it.

So I ordered the chair and between that time and being delivered my head and emotions were all over the place, there was a lot of “but what if I am giving up? What if I’m not sick enough? What will everyone else think? But there was a lot of anticipation and excitement as well, and when it came and I took it out! OH MY GOD! it makes me so happy. I’ve been places I haven’t been for years because I didn’t know if my legs would give up halfway and even if they didn’t I’d be paying for that walk for the next three days. Using a self propelled wheelchair is really hard work and its going to take me a while to build up the muscles in my arms, and learn to maneuver in small spaces and get up kerbs properly, but its still so much easier and less painful than walking and it makes me realise how much of my constant tiredness was about walking, standing, balancing and living with the pain

A lot of my friends live in the nearest big town rather than the tin-pot valley town I live in and it makes me feel less Isolated already because I know getting there and back will take a lot less energy and be a lot less stressful with the chair.

I am very, very excited about this, much more than I thought I ever could be

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Days without spoons

sometimes I wake up without spoons, sometimes because I exerted myself too much the day before, sometimes because I’ve not been doing enough self care, sometimes just because. And no spoon days are very, very boring, they mostly consist of watching reruns of crap tv that I’ve already seen three times. I need to find ways of doing things that are interesting, amusing, diverting, self caring, but that doesn’t take a lot of body effort or brain power.

a) Books, my house is full of books, but they are all books that take more brain power than I often have on no spoon days, so I need to start borrowing books that are easy light fiction

b) bath stuff, I’m trying to learn to make my own bath products which is fun and good for the environment and such but somedays I’m just going to want some pre prepared stuff to chuck in the bath

c) use dry shampoo instead of washing hair

d) one of the things on my forty by forty list was to learn about classical music, so listening to Radio 3, classic FM. podcasts, and stuff on youtube. I probably will not take in all the information because of brain fog on spoonless days but at least I get to listen to nice music

e) netflix

f)radio comedy

g) if the weathers nice sit or lie outside in the sun

h) always have a frozen meal that can be microwaved in the freezer for these days

 

 

Girl

I was the one who taught you to
Breathe

who taught you to
Stand

we were
mercury
oil
honey
milk

around and through

We were disney films

bubble games
aniseed balls

we were
shakespeare in silly voices

but you decided to be the good girl
an “all my friends are normal except you” girl
an “if only you put more effort in, walked better, didn’t look so butch, at least tried” girl

and when i changed my name
to the hard male sound

you told me all vicious, unnecessary jokes they made
like i didn’t already know i was the wrong shape for your world

seven years in
your rage at me not being girl enough to wear a dress
at your hetero-patriarchal consumerist lamp post pissing contest
left me lost and cold

A decade later

when i finally realised that you would never make a place for me

That you’d decided I was inconveniently
crippled and queer

I said to her

“we love them more than they love us, those straight girls, and they disappear into their whitebread lives without us, they empty us out and leave us on call, waiting for nothing

we would joke about running away to join the circus

me not realizing this genderqueer, limping, woman loving, arm scarred, given away, crazy girl

was your circus

Ground rules and boundaries for this here new blog

  • I will blog as and when I feel like it
  • I will blog about anything and everything and deal with the fact that some people won’t like that
  • I will not start fights on the internet, that is I might link to stuff i disagree with and talk about it but i wont get involved in long. time, and energy, consuming flame wars
  • I will not argue with anyone about social justice concepts and behaviours and why they are necessary
  • I will not tolerate, misogyny, homophobia, transphobia, transmisogny, anti-semitism, racism, classism, lesbophobia, biphobia, ableism, classism  or anything else i have missed from this list but that is clearly in the same category
  • If i fuck up on one of the above issues i will listen to people when they point this out
  • I will not tolerate uncritically  pro adoption sentiment
  • I’m happy to discuss my religious beliefs and actions but i will not spend time defending them
  • some people will have primacy over others here and those people are: queer people, adoptees, disabled people, women generally, but especially those who fit in the aforementioned categories. (But these people must still respect all the above points)
  • I dont have to interact with anyone on here I don’t want to