#disabled independence

[panicdeleter]

Home Accesibility: need advice please

Hey, so I've lived alone in an apartment for years and struggled with a buttload of things. I finally have enough money for a house and I'm trying to determine whether I can actually manage the additional labor which is required. Recently a friend bought me a lightbulb with a remote and I realized there might be solutions to my problems other than *build a complicated system of using the lightswitches or be uncomfortable until it's annoying enough to overcome the exectutive dysfunction* I don't have any idea where to even start looking for information about this other than to ask other disabled people, most of the information that I've found that's been really useful has been tumblr posts that have just shown up, rather than things I can actually find online, so I thought I would just, ask for help (that's so motherfucking hard) I don't have the skills or spoons to make this any easier to read, please ask for clarification if this post is hard to understand!

[capableism]

What the ADA really thinks about service dogs

What are some differences between humans and animals? The scientific  community would answer intelligence or behavior. Humans are civil and part of  what Peter Singer calls a "moral community." We have rules, while animals have  natural selection. Even though it is proven, all animals have "cognitive empathy"  and adjust to different needs in their community. Humans are self-centered and  instinctively want to categorize things as part of early cognitive development.  Piaget's theory describes this categorization as Schema. It is a natural way to  learn. 

Children are curious. Someone with a visible disability may be challenging  to understand because they can't immediately identify and categorize us.  

Animals and people can learn to adjust according to De Waal's research. Living beings have the instinct to protect their own for the survival of their  species. Humans dominate the planet, but that doesn't negate other species'  intelligence or needs. Studies of animals and disability converge when  discussing the issues of service animals.

 Politics define animals as "equipment" that has functions and not feelings. They serve to perform tasks. The law  separates humans and animals by ignoring natural emotional interactions  between humans and animals. Reasons that people need a service animal  varies. The fundamental reason is to help them be "more productive members of  society" (Oliver, 111). This belief that disabled people inherently make lesser  contributions to society is ableist. It extends the thought that disabled people  cannot just be an equal part of society. In the hierarchy of  disability, there is a line drawn between what an "acceptable disabled person  can do." Those with severe conditions are closer to animals that humans "mercy  kill" Severe disabilities render a human less valuable.

A service dog can be a tool to lessen the burden of disability on society. "The  fact that service dogs are seen to provide independence for the people they  serve shows that we discount our dependency on non-human animals." (Oliver,  113) 

The rise of emotional support animals demonstrates that humans need  animals beyond functionality. The ADA does not recognize emotional support  animals like service dogs. "We built walls and fences, corrals and cages not only  to regulate their (animal's) physical proximity but also, and moreover, to keep  them out of our moral community." (Oliver, 117) This question of morality and  ethics surfaces in animal and disability rights. Disability rights are human rights.  

Animals are living creatures that share the planet and ethically deserve respect. Otherwise, humans would be "animals" crossing a line. According to De Waal's theory of learned adjustment, "it could go in multiple directions– if animals learn  another animal is vulnerable, they might take advantage of her, abandon her,  help her or accept her" (Taylor, 17). I believe humans are as capable as any other animal of choosing among available options. Morally we have the option to be good or bad. Humans "discount" animal connection possibly to maintain lines and categories where everything fits.

When something is unfamiliar, we can either reject it or learn from it. Studies between humans and animals are separate because we're not "one of those" animals. But the same logic of morality and ethics influences the politics of human life.

Sources

Taylor, C. (2020). Animal crips. In S. Jenkins & K. S. Montford (Eds.), Disability and animality:rip perspective in critical animal studies (pp. 13-34). Academia. https://www.academia.edu/45026461/Disability_and_Animality_Crip_Perspectives_in_Critical_Animal_Studies?auto=citations&from=cover_page

Oliver, K. (2020). Service dogs: between animal and disabilities studies. In S. Jenkins & K. S. Montford (Eds.), Disability and animality:crip perspective in critical animal studies (pp. 13-34). Academia. https://www.academia.edu/45026461/Disability_and_Animality_Crip_Perspectives_in_Critical_Animal_Studies?auto=citations&from=cover_page

[majaurukalo]

Disability benefits shouldn’t be tied to the income of a disabled person’s partner/spouse/parent.

Do you hear me?

DISABILITY BENEFITS SHOULDN’T BE TIED TO THE INCOME OF A DISABLED PERSON’S PARTNER/SPOUSE/PARENT.

This is the straight forward way to deprive a disabled person of their financial freedom and independence and trap them into possible abusive relationships.

[shesnake]

24 hour time loops: not long enough to create or undo anything permanent, crazy-making but often still funny

365 day time loops: the most fucked up shit you could possibly imagine

[flowercrowncrip]

I wish that instead of talking about “independent living” as disabled people we talked more about “autonomous living”.

I think when a lot of people see “independent” they assume it means living alone without other people. And some people assume that independent living services aren’t for them because they need 24/7 care. Or non disabled people think it’s pointless because many disabled people can’t live on their own.

But what we call independent living often includes having access to carers/ PAs/ support workers. It’s about having freedom to make all the meaningful choices we can, having the support and equipment we need to live comfortably and safely and to access the community and other activities. And I feel like “autonomous living” describes that better.

[cononeillbreastingboobily]

Every country should have options for free/affordable accomodation for disabled people who don't want to live with their families and I'm so serious. Personally I'm in the process of realising that my current living situation is actually making me feel miserable lmao, and I was fortunate enough to stumble upon an opportunity to live somewhere else, where I would have 24/7 care without having to see my parents every day. I'm still on the waiting list, but it honestly can't come soon enough. The codependency between disabled people (especially people who were born disabled) and their parents isn't talked about nearly enough (or at all?) and it's a huge fucking shame because I think that if it was more present in the discussion on disability rights, there could be more tools in place to help disabled people who want to be independent from their families while still receiving the care they need.

And still it feels like it's not talked about because families should "stick together" and "sort it amongst themselves" and their disabled relatives are "their cross to bear". Like. Has anyone asked the disabled people in question whether they want to be their family's cross to bear? Whether they want their parents to be the people they see and talk to the most throughout the day? Whether they want to have only them to depend on, and if they were both sick or something, then I guess they're fucked lmao?

So. Accomodation for disabled people who seek independence from their families. Now 🤲🏻

[cassolotl]

UK government planning to scrap a major disability benefit

I'm only just scraping by and the government are proposing to take away PIP (a disability benefit), which would be HALF of my income wiped out.

"Reforms to personal independence payments (PIP) could include stopping regular cash payments, and instead offering claimants one-off grants for things like home adaptations." -- "Disabled people face end to monthly benefits cash", BBC News, 29 April 2024

And:

"The plans, which will be consulted on over the coming months, also include proposals to “move away from a fixed cash benefit system”, meaning people with some conditions will no longer receive regular payments, but instead access to treatment if their condition does not involve extra costs." -- "People with depression or anxiety could lose sickness benefits, says UK minister", Guardian, 29 April 2024

That's what the NHS is supposed to be doing...

Genuinely absolutely terrifying.

Can anyone living in the UK join in with an (hopefully!) overwhelming cascade of unique emails to their MP opposing this? WriteToThem.com makes it very quick and easy.

They're proposing to replace it with one-off grants that the individual can apply for, which is absurd and horrifying, so feel free to point out how that won't work as well!

Here's what I'm writing, and do not just copy-paste my letter/email, because that makes it less legit. Do your own thing, even just one sentence telling your MP that you're opposed is enough if that's all you can manage. Whatever you want to say is what your MP needs to hear.

Dear [MP's name], Today I learned that the government plan to scrap PIP, and maybe replace it with something like a one-off grant application process, before the next election. ("Disabled people face end to monthly benefits cash", BBC News, 29 April 2024: https://www.bbc.co.uk/news/articles/cn0ry09d50wo) PIP is about half of my income (about 44%). I don't spend it on occasional large purchases, I spend it on countless things that are more expensive for me than they are for other people. PIP is in place to acknowledge, as it says in the above article, that disabled people's lives are more expensive than non-disabled people's lives by hundreds of pounds per week. ("Previous research from Scope suggests households with at least one disabled adult or child face an estimated average extra cost of £975 a month to have the same standard of living as non-disabled households." That's £225 per week, and the maximum amount of PIP you can get is £184.) So firstly, it could be argued that PIP doesn't even cover the additional expenses of the average disabled household. And next, the cost of implementing an alternative system would be worse for disabled people, totally unsuited to its purpose, and more expensive to run. Worse for disabled people: Currently PIP acknowledges that being disabled takes a lot more work to maintain a comparable standard of living, and as it's an amount of work that the claimant cannot sustainably do, they are given money so that they can pay someone else to do it. These costs are distributed across all living expenses, in addition to occasional one-off purchases of e.g. mobility aids. Having to apply for one-off payments for expenses would be more work on top of that, so if the disabled person isn't able to do it (which is very likely) they will either have to work less in their day jobs in order to spend more time applying for one-off grants, or they will have to also apply for one-off payments to pay someone to apply for more one-off payments. This is self-evidently a waste of energy and time, and totally impractical, as well as being counter to the entire point of disability benefits. It would also be extremely undignified for the disabled people, and arguably against human rights (right to private life and dignity), to have to justify each purchase to the government. Totally unsuited to its purpose: One off-grants are not suited to ongoing higher expenses such as having to buy more prepared food (e.g. carrot batons are more expensive than raw carrots and go off much more quickly). Does this policy assume that disabled people's PIP is only for things like wheelchairs and walking sticks? More expensive to run: The system for PIP applications is already fairly backlogged, in that my last application took over 6 months to complete. I was awarded PIP for 10 years. If every application for a one-off grant had to be accompanied by an application of a similar scale that wouldn't be workable, so presumably an initial PIP application like the current system's would still be required to qualify for the system in the first place, and then following that, numerous smaller applications for money (e.g. for taxis, pre-chopped veg, painkillers, specialist clothing, etc.) would be carried out per person per month. The disability benefits system would have to be scaled up significantly, and it would be much more expensive. It is far cheaper to give people a set amount of money based on their needs; it's the same money that you would be giving them in grants anyway, but without having to process each purchase/one-off application. I implore you to oppose this proposal. It is blatantly unworkable to the level of absurdity, but more importantly it is inhumane. I look forward to your reply detailing your stance. Many thanks in advance. Yours sincerely, [My name]

But, again, if you can't manage anything long or complicated like that, your best is good enough. Even if they're not all perfectly written and detailed, we want to bowl them over with sheer quantity of emails.

[sickly-sapphic]

i think the able to work to unable to work spectrum is more of an actual spectrum than people like to realise. like, yeah, overall you do either fit into able to work and unable to work, and yes there's a privellege that comes with the former that definitely deserves acknowledgement, and there's unqiue ableism and discrimination faced by the latter.

however, ability to work itself is a spectrum. there's people who are completely able to work - there's no hinges or what ifs or anything like that. then there's people able to work, but it's environment-focused. they can only work from home, they can only work in quiet spaces, they can't work outside. then there's ability to work but it hinges on what the physical expectations are - they can work as long as there's no heavy lifting, they can only work sitting down, they can only work if there's no talking required.

and then there's also people able to work, yes, but it will completely change how their life and disabilities function. people who can work but if they do, they will need hours or days of rest between shifts, or they'll need a caretaker to see to every need due to exhaustion and flares from working.

i think while its important to talk about how disability affects those who cannot work, under any circumstance, i think the "able to work, technically" group also needs more advice-sharing, talking amongst the community and supports aimed towards them

[duality-disability]

ah yes, daydreaming of owning a good quality manual wheelchair so i dont have to worry about my legs giving out from under me. A normal, ablebodied daily activity

[epic-sorcerer]

“Arthur can totally dress himself he’s just spoiled” why are you giving him that much credit

[averixus]

To anyone who gets Personal Independence Payment (UK disability benefit) and has trouble with the types of communication they usually use (e.g. phone): I have just successfully got the DWP to promise that they will contact me by email only. If you want to do this, or need other adjustments in communication for disability reasons, email the address format.pip@dwp.gov.uk.

The magic formula to include in your email is:

"I am writing to request a reasonable adjustment in communication." (that's the legal jargon for them meeting your needs)

"I have [condition/s] and am defined as disabled under the Equality Act 2010." (that's the law that forces them to comply - you don't need specific diagnoses but can say e.g. "auditory processing issues" or whatever brief summary describes you)

"Due to my disabilities I am unable to communicate with the DWP by phonecall [or give any other communication types or formats you can't do]." (be brief but specific, you don't need to explain exactly why this need follows from your disabilities as long as you state that it does)

"Therefore, I need [your specific communication requirements] when communicating with the DWP." (tell them exactly what you actually need - for example, I said that I need asynchronous text-based communication such as email for both when the DWP contacts me and when I need to contact them directly. I specified that this includes assessments as well as any other contact about my PIP status or application. This means no in-person assessments!)

"Please contact me to confirm that the DWP will [meet your needs as requested]." (always ask for receipts)

"[Your full name], [your National Insurance number]." (make sure they can find your case)

And please feel free to share this info with anyone you think may need it! No need to refer to me or anything, just get it out there 👍 It's actually illega for them to not have already made this info public alongside their phone numbers and postal addresses, so.

[fibrousearth]

My first earring listing is live! These are entirely handmade from sterling wire and vintage glass beads, available now on my ko-fi!!

[librarycards]

If one subscribes to an ideology that views people with cognitive, psychiatric, and other diagnoses as mostly incompetent, ‘child-like’ and unable to care for themselves or make meaningful decisions about their lives, then an idea such as independent living or living in a non-institutional setting is quite radical, which is why it was, and still is, so ferociously resisted. It may be useful to understand what one means by a ‘dependent population’ that cannot live 'independently,’ which is what many proponents of institutional and group home living say of people with significant disabilities. Two dimensions could be affiliated with the term dependency: first, dependency on the state for financial support, health care, and other provisions; second, perceived inability of people to engage in their own self care without assistance of others (Oliver 1990). Some disabled people seem to fit both definitions.

In everyday usage, dependence implies an inability to care for oneself and thus having to rely on other people’s assistance. Conversely, independence implies not relying on anybody and requiring no assistance, a concept tied to an individualistic ethos (Oliver 1990). Disabled people often embody a different definition of independence, as exemplified in the principles of the Independent Living Movement. Under this framework, independence is perceived as the ability to control one’s life, such as hiring one’s own aides, and deciding on daily routines. It is not understood to mean doing things without any help from others. When analyzing daily living in modern societies, it is hard to find situations in which any people are independent from one another. Thus, projecting dependence as a characteristic only of 'fragile’ members of our societies (i.e., elderly, disabled, and children) may seem natural, but it relies on a specific North American framework of rugged individualism (Ben-Moshe, Nocella, and Withers 2013).

If anything, in many cases it is societal attitudes that create dependence amongst elderly and disabled people. Inaccessibility of the built environment, patronizing attitudes, historical exclusion from schooling and the increasingly fast pace of life in modern societies are all contributing factors to the social construction of disability (Wendell 1996) and dependence (Oliver 1990). Dependence is not inevitable or inherent within these populations. Dependence was prescribed to people with disabilities, and the elderly, so it seems detached from 'normal people’s’ existence (Finkelstein 1993). An additional problem of the creation of forced dependence and infantilization is that it is often 'masked by loving care’ (Hockey and James 1993) of family members or professionals.

Liat Ben-Moshe, “Alternatives to (Disability) Incarceration”, Disability Incarcerated: Imprisonment and Disability in the United States and Canada.

[youngchronicpain]

When my partner comes home I am usually in the same spot in bed. Right where he left me.

The thought makes me want to cry. But it doesn't matter. It doesn't matter that I can't really leave the house alone. It doesn't matter that I spend the majority of my life in bed.

I am working on my projects today while he is doing something he enjoys. I planted cantaloupe seeds in my garden. I am rearranging our kitchen. I am going to work on a story that I am really excited about.

He is going to put my new shower chair together later. We will make dinner together and listen to our current audiobook. Life is good.

It's fine.

[sixseasonsofodestawithatardis]

Explaining PIP, the reforms and how YOU can help!

Recently, Prime Minister Rishi Sunak and Secretary of State for Work and Pensions Mel Stride announced measures to reform PIP (Personal Independence Payment). It's a benefit given to disabled people, whether they are employed or not, to help provide support for the extra costs incurred due to being disabled. PIP can be paid on anything you need, such as a carer, adaptions, your bills or a night out (yes, disabled people are entitled to a social life I'm NOT arguing with anyone about this!) On top of the changes to sick notes, the announced reforms are an assault on disabled people to desperately cling to power!

Below is an explanation of PIP and the reforms so people can answer the open consultations, call for evidence, and sign a petition. We need as many people in the UK as possible to answer both to try to stop these reforms from happening.

What is PIP?

The Tories are saying PIP is a one-size-fits-all benefit, which again is a lie as PIP is designed to look at how your disability affects your daily life and how difficult it makes it for you to participate in society, not whether you have this specific disability so it only affects you in these ways! It doesn't matter whether you're diagnosed or not, either. There are two categories they look at throughout, known as the 'Daily Living Component' and the 'Mobility component' The process involves 50 pages you have to fill out (link to Turn2US for proof https://www.turn2us.org.uk/get-support/information-for-your-situation/claiming-personal-independence-payment-pip/fill-in-the-personal-independence-payment-pip-form#:~:text=You%20usually%20get%20the%20paper,it%20is%2050%20pages%20long.)

With hundreds of letters from Doctors as proof of your condition! And then an assessment in which you will answer all sorts of demeaning questions, give in-depth answers that you don't feel comfortable sharing, and hope the assessor has understood how it affects your life and written it down properly and that you'll get the right amount of money at the end of this assessment or re-assessment.

To get the standard rate in both components, you need 8 points; to get the enhanced rate, you need 12 points.

They'll then give you two, three, five, or ten years (10 years is known as a fixed-term award and a light-touch review) to undergo the terror of the PIP assessment again.

The reforms proposed and why they're terrifying!

The reforms they've suggested so far are

One-off grants for aids and appliances

receipts to then be claimed back at a later date

the changing of eligibility for PIP or the category 'Long Term sickness'

Vouchers instead of cash payments

If you've read those four options and thought they were cruel, infantilising and impossible to make work, then you'd be right.

As a disabled person, bills don't magically disappear. You still have council tax and rent to pay or a carer. Will landlords and councils accept these vouchers? A one-off grant won't work here either. The vouchers also signal that we can't be trusted to pay for our own needs and aren't responsible—which is far from the truth!

Aids and treatments are already covered by the NHS, so this is redundant and will be futile, especially when you consider the long waiting lists for mental health treatment (and just generally) on the NHS—and even if they aren't, we do know that and will use PIP to save up for it, etc. It's easier and more economical to give us cash payments.

To have the receipts to claim back expenses, we need to have the money to spend on said expenses.

Changing the eligibility will (much like these other suggestions) put more disabled people at risk. If you want mental health to improve: Fix the NHS, wages, sort out the cost of living crisis and fund the research/support for Long Covid sufferers.

How you can help! - UK-based people, plz sign everyone else. Please reblog & signal boost!

If you live in the UK, there are currently two consultations open ( the sick note one closes on 8 July 2024, and the PIP one closes on 22 July 2024). Ideally, the responses will be used to decide whether these reforms go ahead.

Here are links to the two reforms for PIP and changes to the sick note process.

Please note that the PIP consultation ( the first link) is 6 pages long and must be completed in one go. It's also filled with typos, repeated questions, and very difficult wording in many places, so be on the lookout for that! People are rightfully complaining about its accessibility, so the link and end date may change. I will update this post if this happens. I also know answering stuff like this is overwhelming, so here is a thread by PeachyInWales on Twitter about how they approached the consultation. If I see any samples by any disability activists or organisations, I will post them here, too!

This second link is the second consultation or call to evidence. Which GPs are being stripped of the ability to sign sicknotes for people on benefits, which is again ridiculous!

And the last link is a petition from SCOPE to stop the government from demonising disabled people further.

Ultimately, we're trying to stop a benefit that is difficult to get and barely covers costs for many applicants from getting worse.

If I've missed anything then let me know! I'm sorry the post was so long, but it's a lot to go through! Again, UK-based people, please share your thoughts if you can and sign the petition! If you are not currently living in the UK, please share these links or the post so other UK-based users can see this and try to help.

Thank you!

[thesoftestmess]

this might not be canon, but personally i need furina to struggle a whole lot longer and harder with post-prophecy depression and mental illness. She's played the same tiring and painful act for five centuries, was constantly in a life or death scenario and had to hide her true self from the world the entire time and she won't just recover in a few years from that.

There's parts of her that will never ever be compatible with a simple human lifestyle, and parts of her that are irreparably broken. She isn't sure of her personality after everything that happened and the lie she had to live. She slips between personas and her archon temperament comes through like a defensive mechanism at any sign of conflict or trouble.

She's plagued by nightmares. Of the flood, of the trial, of the people closest to her conspiring against her behind her back, and of being found out in a million terrible ways. Of saying the wrong thing, making a wrong decision. Of being found out, of being found out, of being found out.

Lying or keeping a secret feels existential still. Being honest still feels life threatening sometimes. Putting herself first feels like putting both hands on a hot stove.

She doesn't live in the palais anymore, doesn't have to sit through trials anymore, but her heart and soul are still there. In her dreams she's still at the place she spent her entire life's memories at.

Yes, she can make new memories, but it'll take time. More time than she has, maybe, now that she's the closest to being human she'll ever be.

She'll never be human in the way the people around her are.

What sort of human has 500 years worth of memories after all? What human tells personal anecdotes and mixes up their centuries?

What sort of human can feel the absence of their divinity like it's a physical thing? A voice that will never speak to her again, or keep her alive? What human has no family, no childhood?

What human remembers so little, but still remembers death somewhere deep within?

She jerks out of sleep from it sometimes, gasping for air, and spends the rest of the night awake, almost frozen by fear. The flood is over, but it's hard to convince her racing heart that the danger is too.

Humans have entire family trees that go generations back, but Furina was put into this world a solitary creature, her blood heavy with sin ever since she turned human.

She owns a hydro vision now and doesn't know how to yield it, but the ocean still calls out to her some days. Sea creatures flock to her like they can smell she's not human enough.

She learns how to make little hydro companions for herself, so the darkness and emptiness of her apartment feels less ominous when she lies awake at night.

She can't turn her vision into a weapon quite yet, but when it rains the droplets seem to cling to her. She's watched them roll upwards along her arm, watched them gather in her palm like kin. She wonders if sea creatures flock to neuvillette in a similar way, or if his immense power makes them recoil. She wonders if elemental dragons can feel regret. Wonders if he, too, ever feels entirely foreign in that human body he was given. If he, too, lies awake trying to grasp faint memories of a past life.

She's extremely human in the way she's plagued by body pains from not being able to relax just one day in five centuries. The years catch up with her once she gets out of survival mode, and fatigue is a constant companion now. Sleep comes difficultly and getting out of bed was easier when the fate of a whole nation depended on it. On her. She's never lived for just herself before and some days she's not sure she wants to.

She did her duty and earned her retirement and the story turned out well, all things considered. She still has people by her side, some of them.

Still, she feels raw and tired and overwhelmed by the life lying ahead of her. As a human and as someone who will always be Something Else.