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institutionalization also needs to be fucking abolished
i know sometimes other disabled people are hesitant about abolition because of a real lack of consideration in a lot of the dominant discourse about it for what it means for folks who are institutionalized so I'm going to just do some creative thinking on what it could be like.
i am a person who has over my life had to weigh up multiple times if I should institutionalize myself, because I have high support needs. Chip and I have discussed at length how I might have been net safer overall if I had done something to land myself in prison.
this is because of the level of abuse and torture i was being put through by my caretakers on a daily level without any chance or hope from reprieve, often coupled with denial of all food, safe places to sleep, and medical care. it was something i had to really think on.
so ive in turn put a lot of thought into what abolishing institutions alongside prison and policing could mean, by thinking about what they perversely have to offer to some disabled people, especially autistic survivors of torture, abuse & other domestic violence.
i've been spending a lot of the year reading interviews with and writing by incarcerated folks, especially multiply marginalized ones to inform this thinking, because otherwise it is inevitable the same mistakes will be made.
i can't find a link atm but there was one piece earlier in the year or late last that's sat heavy in my heart from a woman who had survived horrifying domestic violence but felt safer in prison and that?
That's a problem! We all know prison is incredibly fucked up and violent!
That's a problem! We all know prison is incredibly fucked up and violent!
So, what does institutionalization and prisons put on the table to make any of us look at them and go "well, could be worse"?
- structure, routine, mostly certain provision of food and drink, and doors.
that's about it.
- structure, routine, mostly certain provision of food and drink, and doors.
that's about it.
however, the provision of food, drink, and having a door? that's vital. absolutely vital. that's what had me considering if i wouldn't be better off in the long term.
the ability to have a space with a door in between you & the person who hurts you, and basic provisions for life
the ability to have a space with a door in between you & the person who hurts you, and basic provisions for life
independent living in the community is the goal. so what do we need to make that happen, safely?
the first thing that springs to mind is care agencies, but those are often deeply rotten and i've been abandoned by them multiple times now.
the first thing that springs to mind is care agencies, but those are often deeply rotten and i've been abandoned by them multiple times now.
so far my current thoughts lead to community pods. abolishment of institutions and prison and policing has to come with recognizing housing, food and drink as human rights that should not be commodified on a basic level.
disabled people have already been doing mutual aid. as soon as the pandemic spun up, many of us were the vanguard on preparing our communities with the gathering of information, some of us mass produced hand sanitizer, others created ways to communicate without contact.
we know how to take care of ourselves, and we know how to take care of each other, and online we have an entire thriving ecosystem that often goes entirely unnoticed and unremarked upon by abled folks. we should be the ones designing our own futures.
I'm going to talk a bit about how i currently live to inform on how it has shaped my thoughts: I live with two other disabled people, my best friend Chip, and his mother. Chip evacuated me from a lethally abusive home in australia, and we are very close.
I lived here for free for several months while he and his mother helped me set up things with social services here, and initially once I had a benefit income my board was $50/week. I pushed to up that first to $75, then $100 as I was able to transition to a more stable benefit.
However, chip and I have competing access needs with his mother. Her disabilities are primarily mobility based, her knees are dissolving. She is good with bending and lifting though, and needs things to be neat and tidy for mental health reasons.
I am bedbound. I usually try to quantify this with a percentage, but basically unless I need to get up to go to the bathroom, I am in bed all of the time, because everything hurts. This is also the situation for chip, though mainly driven by fatigue rather than pain.
as a result, things build up around us, because we need to have important stuff in immediate reach, and this causes problems for his mother sometimes, because she needs to be able to walk without tripping hazards. this is just one element of the clashes there.
So our pod functions, it has for three years now, but it is not ideal, and it is not what would be the most accessible living style and standard for any of us. This has also informed my thinking.
Chip and I have completely compatible disability needs. I cannot bend or lift things because I am hypermobile in a major way, and I'm being investigated for postural orthostatic tachycardia syndrome. He is hypermobile, but can lift and bend.
When it is just the two of us in the house, we can get everything done just fine, because we naturally slip into a complementary rhythm.
SO WITH ALL THAT CONTEXT: My thinking right now leads me to community pods for independent and accessible living.
SO WITH ALL THAT CONTEXT: My thinking right now leads me to community pods for independent and accessible living.
A lot of us make jokes about disability communes, and it's worth looking at smaller scale versions of this and how we can establish and make these work. I am interested in the idea of community specific communal living sign up sheets for those of us with high support needs.
For example, using me and chip and the history of our living together to lay out how this might go: I make a listing as someone seeking a partnership with other disabled people to live more independently, and I mark it as Dangerous and Urgent to signal I am not safe where I am.
I fill out what household tasks I can reliably do, if the environment is accessible:
- folding laundry
- ingredient preparation (variable)
- tidying floor space
- organizing pantries, shelves, cupboards
- mopping (variable)
- vacuuming (variable)
- planning
- folding laundry
- ingredient preparation (variable)
- tidying floor space
- organizing pantries, shelves, cupboards
- mopping (variable)
- vacuuming (variable)
- planning
I fill out what broader tasks I can reliably do, if the environment is accessible:
- making appointments (for other people)
- medication management (for other people)
- cooking (for other people)
- gathering laundry, taking out empty cups and plates (for other people)
- making appointments (for other people)
- medication management (for other people)
- cooking (for other people)
- gathering laundry, taking out empty cups and plates (for other people)
This creates a picture of my support needs and issues: it is much easier for me to do some tasks for others than it is for me to do them for myself.
I make a listing with any other important considerations: no smoking, prefer to live with queer and trans people, no cis men.
I make a listing with any other important considerations: no smoking, prefer to live with queer and trans people, no cis men.
I make a list of the things it is absolutely not safe for me to do:
- grocery shopping
- pegging wet laundry out
- driving
- unsupervised cooking
- chemical cleaning
And specific sensory issues:
- bad with high pitches
- need low brightness
- no strong scents
- grocery shopping
- pegging wet laundry out
- driving
- unsupervised cooking
- chemical cleaning
And specific sensory issues:
- bad with high pitches
- need low brightness
- no strong scents
I mark that a living space has to be wheelchair and walker accessible, and that I have a therapy cat, do not want to live with a dog.
Chip meanwhile has filled this in from the opposite side, and our needs are compatible.
Chip meanwhile has filled this in from the opposite side, and our needs are compatible.
Like disability okcupid, we match up as having complementary support and access needs. As my environment is immediately unsafe, I am helped to leave and placed in temporary accessible housing in the style of the nz government's current covid-19 self-isolation facilities.
Just, you know, without the isolation part.
Chip and I talk and feel out if our personalities are compatible as well as our needs, and if we agree to give it a go, are then helped to settle into a home that meets our specific needs in a community.
Chip and I talk and feel out if our personalities are compatible as well as our needs, and if we agree to give it a go, are then helped to settle into a home that meets our specific needs in a community.
We get a check in at first every month, then after six months, every three, eventually leading to a yearly check-in to determine that we're doing okay together and identifying any new challenges and needs, and we can initiate one if we feel a need too.
Being able to set the maximum and minimum household size would also be important. If a disabled person with high support needs wants to live on their own, all accommodations to help them do so are provided, including being able to *pick their own choice* of carer.
The care profession needs to be completely overhauled and led and directed by disabled people with high support needs, rather than abled people who don't consider us to be full human beings. It's particularly important that nonspeakers be prioritized here.
Food and drink must also be guaranteed and free. This is vital. If someone cannot cook for themselves, there must be a way for us to place orders for food we actually want to eat, via using something like delivereasy to do so.
Having high support needs doesn't mean that we have to eat shitty food. We are allowed to have nice things that make us happy, and our bodies work better when that is enabled.
