Personal essays about my lived experiences of being disabled, unhoused, and otherwise multi-marginalized. “Chronically couchbound” refers to being both chronically ill and being chronically homeless; while being bedridden but not having access to a bed due to couch surfing, thus “couchbound” and started as an instagram account I made in 2017 as I navigated coming into disability while unhoused.
My wheelchair is freedom.
My powerchair is freedom.
My cane is freedom.
My rollator is freedom.
My crutches are freedom.
fellow people who are neither blind nor sighted:
feel free to put some info in the tags, i'm curious!
I consider myself to have low vision or sight impaired— I’m not legally blind (yet) but my vision isn’t correctable to 20/20 and hasn’t been since I was like 16.
I have a degenerative condition that I’ve been aware of for most of my life, I’ve needed glasses since I was 7 and my vision gets worse enough for a new prescription every 6 months or so. In probably the next decade or two if the decline continues as it has been I’ll be legally blind.
I also deal with transient complete blindness as a rare complication of my other disorders (Migraines and MCAS), as well as transient nystagmus due to Ménière’s Disease.
For Disability Pride Month this is your reminder to include all Mental Illnesses in your advocacy.
That means BPD, Bipolar,NPD, HPD, ASPD, AvPD and other Personality Disorders.
That means DID, OCD, PDID, UDD, & OSDD.
That means Schizophrenia and other Psychotic Disorders.
I hate when a post says “I love freaks” but then lists everyone EXCEPT the “classical” freaks: autistics / mentally ill people / kinksters / queer ppl / furries / cross dressers / what the fuck ever else they can come up with
… but absolutely NOT ppl with deformities and limb differences and face differences. we straight up do not exist to people on this site unless they’re mocking us and it fucking sucks
I love you people with limb differences!
I love you people with facial differences!
Whether your differences are congenital or acquired!
I love you people with congenital bone/joint fusions!
Or surgical fusions! I love you!
I love you burn victims!
Love you heavily scarred survivors!
I love you people with dwarfism!
I love you people with Marfanoid habitus!
I love you people with gigantism!
I love you people with albinism!
I love you women with visible hormonal differences and intersex conditions!
I love you conjoined twins!
AND!
I love you no matter how many surgeries you've had!
I love you with your other comborbid health conditions since that's common here!
I love you with your comborbid intellectual disability and any neurodevelopmental delay since that's common with these too!
I love you with odd gait, limping, and use of arms for movement instead of legs!
Un-fun fact: freak shows were the only legal way for disabled people (those with noticeable disabilities) to exist in public places under Ugly Laws.
People think my extreme hypermobility is so cool and that I should join the circus and what they don’t realize is that I come from a line of freaks who were shown and perform in the circus. My genetic disorder (Ehlers Danlos Syndrome) is common amongst contortionists and acrobats, which is what my family has done.
My great grandma used to tell me stories about how when she was growing up, everyone in her family was a part of the circus. They travelled the country with their trope and her great grandparents were a part of the circus too. She had a cousin who was a “bearded lady” (we now recognize that her cousin likely had PCOS, which also runs in the family— another condition I have).
I used to show off my extreme hypermobility to anyone and everyone. I wore it like a badge of honor. I wanted to join the circus. And then I was diagnosed with EDS. The first in my family. We realized that we don’t just come from a line of contortionists, we come from a line of people with EDS.
I’m not a part of a freak show, I let go of that dream. But with my limping and frequently disfigured limbs (by dislocating) and mobility aids, people call me a freak regularly both on and offline.
I reclaim freak as an identity, a part of my cripple identity, a part of me.
The freak show must go on.
If anyone wants to know where the UK is currently at, disability campaigners have lost a battle over making it a legal requirement for high-rise flats to have an evacuation plan for disabled residents.
This probably sounds obvious, but I learned today that prisoners aren't protected by OSHA regulations, and that this is another reason why employers are so eager to utilize this modern slavery. It's only a couple cents an hour, less transportation costs than the overseas sweatshops, and if you want people to work with hazardous materials without proper training? That's fine too! Prison labor is the ultimate free market solution!
If you want to really change the world, prisoner rights and prison reform is the way to go. Removing the ability of the ruling class to effectively punish the population frees everyone to challenge them in meaningful ways. Arbitrary violence and incarceration is how they keep people scared and divided. There is no crime in our society that isn't generated by our society. Even the worst ones you can think of.
Prisoner rights are human rights. Prison abolition is mass freedom.
You know what, happy Disability Pride Month to everybody who is always the youngest patient in the waiting room at your specialists' offices.
begging everyone to stop desexualising disabled people. we fuck. we masturbate. we have long-term relationships and we have flings and we go through slut eras. we do sex work. we’re not innocent little babies who can never be sexual. stop desexualising us*
*this is not attacking asexual disabled people. they’re also cool and valid. this is about a pattern of desexualisation of ALL disabled people
Today’s particular topic is how SSI keeps disabled people poor.
Let’s first go over what SSI is. Supplemental Security Income is a program that provides monthly payments to disabled people and elderly people who meet the financial qualifications.
SSDI stands for Social Security Disability and eligibility is based on work credits. This is for people who used to work before becoming disabled. We will not be discussing this today.
Here are the facts:
The average SSI payment in January of 2023 is $553 per month.
Disabled people on SSI also cannot have more than $2000 in savings and assets. This is severely limiting.
This is not enough to even cover basic needs. How can someone live based off those payments? Disabled people who live with someone such as a caregiver, family member, or partner receive reduced payments and risk losing their benefits.
Disabled people cannot marry without losing their SSI or losing financial assets.
Here is an eye opening article about forced poverty:
https://brownpoliticalreview.org/2022/01/government-mandated-poverty/
Also check this article by The Hill called “Lifeline for people with disabilities forces them to live in poverty”
https://thehill.com/opinion/congress-blog/3702528-lifeline-for-people-with-disabilities-forces-them-to-live-in-poverty/
The narrative that “you should care about disabled people because one day that’ll be you” is ableist in and of itself.
Becoming disabled is not a punishment. Becoming disabled is not a threat. Becoming disabled is not cosmic retaliation for being ableist. Becoming disabled is morally neutral.
When you call cis people an egg for practicing gender non-conformity, you are risking the safety of actual closeted trans people.
Enforcing the gender binary harms us all.
I do not think the social model of disability is entirely correct.
Yes, society could help out a fuck ton with my disabilities.
But guess what? (/rhetorical question) I would still be fucking disabled.
Society cannot accommodate my disabilities out of me.
I am fucking disabled. I have deficits. I have a body that doesn’t work. And a mind that struggles.
You building a fucking ramp or actually listening to disabled people is going to help, yes.
But it isn’t going to fucking remove the fact that people are disabled.
I need people to shut the fuck up with the whole ‘disability is only there because of society’.
No, disability is there because people are disabled.
Even if you accommodate people, which you need to fucking do, you will not remove their disabilities.
I often say “I’m disabled with or without a ramp”
My city keeps building “accessible” playgrounds for children but they don’t have an accessible public toilet on site or nearby.
This very thing means that all of their efforts to make things accessible are for nothing.
Many disabled people need to have access to public toilets for various reasons (I might add that you are not entitled to know why someone does)
If a public toilet isn’t close enough then a person can’t utilise that space.
You can build ramps and do whatever you want but if there isn’t an accessible toilet nearby…
It’s not fully accessible
I’m aggressively anti chiropractor btw I can’t warn people enough about them
fat agree. for anyone interested, "Behind The Bastards" podcast has a great episode on the origins and modern practice of chiropracty. spoilers: it is not fucking good
My mom is an occupational therapist. She used to work in a hospital and she knew a nurse who went to the chiropractor for back pain or something, they did something to her neck, and she got a STROKE. She was in her twenties. Do. Not. Go. To. A. Chiropractor.
people are still treating mobility aids as a joke…
whether it be using canes and walkers as a joke for being elderly, or people falling out of wheelchairs as the butt of a joke.
mobility aids aren’t funny, ARE necessary for many people and can be sexy if u want them to be
When I was 10 years old and spending most nights sleeping in parks or couch surfing, someone showed me an amazing dessert: canned frosting on graham crackers. You can eat it anywhere, and the frosting stays good for quite some time even kept outside the fridge. It was super sweet and brought me so much joy, I ate a whole sleeve of graham crackers and half a can of chocolate frosting in one sitting.
When I was 16, I came out as trans and quickly after, was forced to leave my family for the last time. I remember talking to my sister about me being trans, trying to explain the hurt of misgendering, how it felt for her to listen to me about it, her telling me she loves me no matter what. And afterwards, we ate chips ahoy cookies covered in frosting.
When I was freshly 18 and sleeping on a floor with no heat, my love and I shared nilla wafers dipped in strawberry frosting. It was cold and uncomfortable but we still laughed and held each other while sharing a simple snack.
And now I’m a couple months away from being 23 and I’m revisiting these memories while eating this overwhelmingly sweet snack. I’m reminding myself that younger me was being cared for all the time, in so many ways, by my community. And I still am. The support I’ve been given throughout my life has been so beautiful, even while it hurts that my family of origin didn’t support me.
Happiness comes from the root word ‘hap’ meaning chance. Like in perhaps or mishap or happenstance. It’s based in circumstances, so if you don’t feel happy when life isn’t going well, it’s appropriate, and shouldn’t be expected of you. But I feel that joy is different.
Joy is that same core emotion as happy, but you can find it in other ways. It’s not unwavering positivity, it’s being thankful and making peace with what you can. It can coexist with a feeling overall displeasure with your life or the situation you’ve been put in. (Note: I recognize that not everyone feels this way, this is just the framework I think in and it helps me cope).
For me, finding joy is much easier than finding happiness, particularly when happiness is unattainable given the happenstances. And I need joy to get by. I need to be able to laugh and smile and feel loved and in community. I think everyone needs that.
As someone who’s unhoused and has spent most of my life that way, I can confidently say that unhoused joy isn’t shown to people who haven’t experienced it themselves. Our community lives in public and yet we’re so invisible. It’s bittersweet sometimes to see other marginalized communities being uplifted, their happiness shown on TV, their joy alive in the streets. I wonder when unhoused people will have that. Our lives are based around despite pleas, hoping to survive every day, fighting so hard with no rest.
And still I seek to find joy every day. Today, that joy is found in frosting on graham crackers.
So much of being chronically ill is work— doctors appointments, phone calls, government aid programs, navigating treatments, scheduling, billing, referrals, the list goes on. When I get a temporary illness, I take it as a sign to rest and reset my body.
I’m laying in bed, making additions to my chaos scrapbook and letting my feelings sit with me as they are, no matter how uncomfortable.
I’m listening to my body, feeling the warm flush of the fever come in waves. There’s a comfort in the routine— water, electrolytes, ensure, blankets on, blankets off, hot, cold. It’s familiar. I know what to do.
I’m focusing on one task at a time. I cut out a snippet and tape it into my book. I sip the cool water. I take deep breaths. I check my heart rate. I sing along to my music. My stomach churns. I breathe more.
I feel so tired, not just physically, but deep inside me. Like I’ve been running for months. And in many ways, I have. Seeking safety. Fighting for adequate medical treatment. Managing my health. Healing emotionally.
It’s so easy to feel overwhelmed.
And I think sometimes, that serves a purpose, the same way the fever does. It allows me to reconsider my priorities, where my energy goes.
So today, my energy is going towards feeling what I need to, and adding to my scrapbook.
And I’m resting.
[Originally written a year ago today]
Other people feel free to add onto this!!
Happy disability pride month to people whose physical disabilities were caused by someone else intentionally.
To those who survived violent hate crimes, to those who survived violent assault, to physical abuse survivors, to torture survivors, to child soldiers, to prisoners, to war and terrorism survivors, to people who were starved to the point of bone/joint/musculature and GI issues, to all who have to live every day knowing that if someone had not consciously decided to hurt them, they would not have those physical conditions.
Crying bc this is the first post I’ve ever seen like this. I have several disabilities caused by violence and abuse and neglect and this means a lot to me.
