#medical model

[neurotypicalabusesurvivor]

This is a friendly reminder that none disabled people often do benefit from the same accommodations disabled people benefit from.

[cryptid-stimming]

Source

[Image ID: two gifs of a realistic human skeleton model which has elastic holding the ribcage, spinal cord and skull together. When a person grabs hold of the xiphoid process (the base of the sternum at the centre of the ribcage) and tugs, the entire skeleton moves as though it is breathing.]

[knithacker]

Knit An Incredible Anatomical Model of a Human Breast - Get the Pattern For This Detailed Educational Tool: 👉 http://tidd.ly/6a33a12d - designed by Anna Jane Wiggins who also sells them fully made.

Crochet option here: 👉 https://tidd.ly/3RJATBH from JusMarrieCrochet

[intervex]

Three models of intersex

I made flags to illustrate different models of intersex, in the vein of models of disability.

At top: intersex human rights. The human rights model: intersex people are a minority group whose human rights are being violated. The dove symbol used in the middle of the intersex flag is a common symbol of human rights. Advocacy for intersex rights include creating legal protections for intersex people to ensure bodily integrity, medical autonomy, and anti-discrimination.

Bottom left: intersex liberation (interliberationism). The identity/radical model: there's nothing wrong with being intersex. Like other queer identities, intersex has been unfarily medicalized. Similar to how gayness has been de-medicalized and trans people are working towards de-medicalization, intersex needs to be de-pathologized.

The clenched fist is a common symbol of liberation movements. I posted this flag earlier - I took the fist from a transfeminist symbol, in recognition of the shared struggles between intersex & trans liberation.

Bottom right: intermedicalism. The medical model: intersex is a medical problem in need of treatment (and potentially: cure). The plus symbol is a reference to the transmedicalism flag. I wanna note that every intermedicalist I've met is against IGM and other violations of bodily autonomy. Intermedicalists advocate for better, *patient-responsive* care for intersex people.

The medical model and the liberationist model aren't really seen as compatible.

But the human rights model is compatible with *both* models: whether you understand intersex as disorder or not, intersex people deserve human rights. 💜

(Tagging for archival: @intersexflags @varsex-pride @radiomogai )

[etherealhydri]

Alternatively, it is imperative to note on multiplicity and abstracts that modern research on DID and non-disordered plurality is not only ignored but hidden from mainstream science to withstand a narrative to uphold rigid and stark biases, stigmas and stereotypes so we feel useless and weak in a system that wishes us dead, and actively tries to kill us through multifaceted covert yet overt ways...

[whumpinggrounds]

Writing Disability and the Idea of Cure

Heyyyy it’s me. Wanted to write about this following my post about Writing Deaf Characters.

Please note - this post is intended for people writing about disabled characters, not a nuanced, in-depth discussion of disability and the idea of cures. I’m happy to discuss that too, if anyone wants, but I’m not going to make a big long post about it because my thoughts and feelings are too complex to be summarized in that way. Anyway -

Conceptions of Disability

There are many, many ways of looking at disability. I’m going to highlight two here that are extremely common today in America. They each have upsides, and they each have downsides.

The medical model of disability treats disability as an individual medical problem to be solved. In this framework, disability is a bodily impairment that should be solved through medical means and medical interventions.

The upsides of the medical model include the fact that it acknowledges that disability or its consequences can be uncomfortable, inconvenient, and undesirable in themselves. Someone who experiences chronic pain saying they wish that they weren’t in pain is not ableist, nor is it self-hating, in the view of the medical model. This mode also prompts progress in seeking ways to medically alleviate symptoms.

The downsides of the medical model are that it does not acknowledge inaccessibility or ableism, nor does it allow for joy and identification with disability. The problems associated with disability are located firmly within the disabled individual - the problem is not with the world, but with the disabled person themselves. Disability is always something to be fixed or cured, and choosing to identify with one’s disability or feel proud of it is bizarre at best.

The social model of disability views disability as a social condition, wherein disabled people are impaired by ableism and an inaccessible world. In this framework, disabled bodyminds do not need to change, rather, it is the world and neurotypical, able-bodied people who must adjust.

The upsides of the social model of disability range from encouraging disabled pride to centering the massive harm that ableism and inaccessibility do to disabled people. It recognizes and promotes human diversity, and asks that the world adapt to the people in it, rather than adapting people to the world.

The major downside of the social model of disability is that in many cases, it ignores very real impairments that do affect people’s lives and treats bodily difference as irrelevant. Even if every set of stairs had a ramp beside it, a person in a wheelchair still cannot walk, though they will have the same access to places that people who are able to walk do. This difference matters to many disabled people, and acknowledgement or mourning of that does not mean that the disabled people in question are not liberated, or are experiencing self-directed ableism.

There are many other models of looking at disability! I may do a write up about that later if people are interested. If you want to do your own research, I would advise understanding the charity model, as it can be easy to slip into and is not a good thing. More positive models to explore are Discrit. Alison Kafer’s political relational model, and the general concepts guiding disability justice.

In Whump

Adding this because I’m in the whump community, and it feels very relevant, so -

It is super tempting to inflict serious injuries on an OC for pain and suffering, and then have them recover very quickly with little to no lasting repercussions. Whump is imaginary, and people should do what they want in their writing, however, I would urge people to think about what messages they’re sending with these fast, flawless recoveries.

For instance: What fears do your whumpees have around acquiring disabilities? How does your whumper feel about their target acquiring disabilities? What are your caregiver’s goal’s in helping your whumpee, and what do they believe that “recovery” means?

What About the Idea of Cure?

The idea of cure is deeply complicated, deeply political, and ultimately, deeply personal. Everyone’s perspective on cure is different. For some people, being cured of their disability is a positive thing. For others, it constitutes an erasure of their identity and community.

For some, cures are not possible in their lifetime, or maybe ever. This can be a painful idea or a reassuring one.

Some communities more than others have a majority opinion about the idea of being cured. Most people know that Autistic people reject the idea of being cured, or even the idea that there is something to “cure.” Deaf communities tend to feel similarly. On the other hand, people with cancer, Alzheimer’s, cystic fibrosis, or degenerative muscular diseases may welcome the idea of being cured and the progress being made to cure them.

Some ideas of “cure” center on aborting fetuses that present with the disability in question. This is massively controversial, deeply painful for some, and personal to all. Some communities have public stances condemning the practice of aborting affected fetuses. Notably, this includes the Down Syndrome community and Dwarf community.

What Does This Mean For You And Your Writing?

As I have hopefully made clear, I am not in the business of telling people what to write. Many disabled people feel that it is not appropriate to ever write stories in which disabled characters are cured. My feelings are more complicated than that, but I won’t say that those people are wrong. I also won’t say that they’re right.

The following are some ways to think about disability and cure that might help deepen your characters. I am not commanding anyone to do anything; you can write whatever you want. Hopefully you find this interesting and very hopefully you find it helpful.

If you are writing a story in which a disabled person is not cured: Think about what that really means for them in terms of impact on identity, ability, and their life more broadly. How does their community react to the decision to avoid, or the lack of, medical solutions?

If you are writing a story in which a disabled person is cured: Think about your motivations for writing this particular story. How does this cure take place, and how does the character feel about it? What impact does the loss of their disability have on their life? How would a real-life person with that disability feel, reading your story?

Lastly, if you are writing about a diagnosis and the idea of cure comes up, please do some research into how that community feels about cures/medical intervention. Individuals in your writing may have different feelings about cure than their real life community, but it is worth thinking about why that would be.

If you are writing about a diagnosis and the idea of aborting affected fetuses comes up, please do some research into how that community feels about it. Please also understand that whatever your intentions, what you are writing about is a form of eugenics. 

I promise you that real life opinions exist about all of these things and all of these diagnoses, and I promise you that these opinions are valuable and worth reading. Please think about what you are saying about those communities when you write.

Thank you so much for reading! If there’s something else you’re wondering about, or would like to see, please hit me up! If you want to talk about something in this post, please also hit me up! I am not infallible, nor is everything I’ve written an objective fact. I’m doing my best, and always happy to get feedback. Happy writing!

[disabledunitypunk]

A Conversation About Demedicalization and Disorders

Let's talk about demedicalization. What is demedicalization? The Open Education Sociology Dictionary defines demedicalization as "The process by which a behavior or condition, once labeled 'sick', becomes defined as natural or normal." It is the process of normalizing a trait of the body or brain or behavior as a normal variance of human existence, rather than a pathological variance in need of treatment or correction.

Put simply, it is no longer looking at something as a sickness in need of treatment, but rather just another way of existing.

Some background info that is needed: the social and medical models of disability.

The medical model posits that the existence of disability is predicated on inherent pathological differences in the bodymind, that it is active physical limitations, some of which can be treated or "corrected", that make a person disabled.

The social model, on the other hand, states that is is a societal lack of access and accommodations that disables a person, and that a person would no longer be functionally disabled were these access barriers to be removed. Keep in mind that this does not mean they believe that people would not still have "impairments" that affect how they are able to function, but that it defines disability as the disadvantages caused by an ableist society treating impairments as needing to be "fixed" rather than accommodated. I defines being abled as being able to participate in society to the full extent an impaired individual wishes to.

I believe in a mixed social-medical model. I believe that some conditions are inherently disabling and that seeking medical treatment for them, while it should be up to disabled individuals, is helpful and good. My ADHD, for example, will still limit my participation in society to the extent I want to, without medication. You could consider medication an accommodation, but there's also the example of my chronic pain and fatigue and POTS that often keeps me housebound or bedbound. There may not be a treatment for that, and I cannot fully participate in the world around me because of that.

"Ultimately, the social model of disability proposes that a disability is only disabling when it prevents someone from doing what they want or need to do."

I am actively prevented from doing what I want or need to do by an inherent feature of my body that no amount of accommodation can allow for. However, some of my conditions would not be disabling with proper accommodation - my autism, for example, I don't generally consider disabling because the people and structures around me DO accommodate for it.

So why is demedicalization helpful or necessary, and how is is applied?

Well, three psychological examples: autism, psychosis, and schizophrenia.

Autism is currently, in the DSM, called autism spectrum disorder. However, autism is a neurotype, and many autistic people do not feel that autism inherently causes them distress or dysfunction, and is therefore not disordered. That is why many of us call ourselves autistic people or say we have autism, rather than ASD. There has been a push for years for the diagnosis itself to be changed to not contain the word "disorder", and to allow for informed self-diagnosis.

Informed self-diagnosis is also an important part of demedicalization, especially of neurodivergence. It says "someone doesn't need a doctorate to know themselves and their own experiences well enough to categorize and classify them. Good research and introspection is enough to trust a person to make the call, and labeling oneself as a specific kind of neurodivergence is harmless, even if they later find out they were wrong.

Psychosis is the next example. There is a growing movement that I've talked about before: the pro-delusion movement. Not everybody experiences distressing delusions, and even when they are distressing, this movement says that only the individual experiencing them has the right to decide whether they should be encouraged or discouraged. It states that it is a violation of autonomy to nonconsensually reality check (tell someone their delusions are not reality) someone, and that as long as a person is not harming others, they can do as they like with their delusions.

This is an example of demedicalization. Treating delusions as something not to be suppressed with medication or ignored or "treated" or "fixed", but as simply another, morally and "healthily neutral" way of existing outside homogenous neurotypical norms.

Finally plurality. Now what's key here is that demedicalization does not mean saying a thing can NEVER be disordered. In fact, that's why I made this post. I saw someone the other day say that they felt their aromantic identity was disordered. Initially, I balked, thinking they were internally arophobic, but I listened to what they had to say. Essentially, they expressed that the identity was never inherently disordered, but that it caused them distress and dysfunction and so they experienced it as such, and crucially, that wasn't a morally bad thing or something they felt they had to correct.

Because here's I think what gets left out of discussions on demedicalization: demedicalization also means no longer treating disorders as something that inherently have to be treated or fixed, that disorders can simply exist as they are if the person with a disorder so chooses; and that anything can be labeled a disorder if it causes distress and dysfunction without being inherently disordered AND without needing to be treated.

And conversely, this means that if you experience something as disordered, demedicalizing it means that you do not have to meet an arbitrary categorical set of requirements to seek treatment, but can do so based on self-reported symptoms. Treatment cannot be gatekept behind a diagnosis that only a "qualified professional" can assign you.

This means if someone wants to, they can label their autism as disordered, but it is never forced on anyone. If someone feels ANY identity - neurodivergent, disabled, queer, alterhuman, paraphilia, whatever - is disordered, they can label it as such, but they also don't have to. There are no requirements to follow through with "treating" anything you label a disorde, either. No strings attached, just the right to self-determination and the right to autonomy hand in hand,

So, back to plurality. You essentially end up with three aspects of demedicalization. You have nondisordered plurality being normalized, you have dissociative disorders that systems can choose not to pursue treatment for without judgment or coercion, and you have disordered systems that can pursue treatment for dissociative symptoms without receiving a difficult-to-access diagnosis. Based on their experiences, they can choose to label themselves as having DID, OSDD, UDD, or related disorders, or to forgo the label and simply seek treatment for whatever distress or dysfunction the disorder is causing.

"But without a specific diagnosis, what if they pursue the wrong treatment and it harms them?"

This is where the importance of recognizing self-reported symptoms as valid comes in. If an OSDD-1b system that hasn't labeled themselves or receives a diagnosis reports that they don't experience amnesia, they won't receive treatment for amnesia.

And since symptoms can mask, if a DID system reports not experiencing amnesia, they simply do not become aware of it or receive treatment for it before they are ready, which is a good thing because recognizing certain symptoms before you are ready to deal with them can be destabilizing and dangerous. More awareness of dissociative disorders will also make it easier for systems to adequately recognize those symptoms, and this isn't saying that someone else can't suggest it to the system experiencing it. It's simply saying the person experiencing a disorder takes the lead and is centered as the most important perspective.

I consider myself to have several disorders and several forms of nondisordered neurodivergence. My BPD is disordered but I am not treating it because I have healthy coping skills already. Same with my schizophrenia. My narcissism, on the other hand, is simply a neurotype. My plurality is both - the plurality itself isn't disordered, but I do have DID on top of it.

A last example, this one physical, of demedicalization: intersex variations. The intersex community has been pushing to recognize that intersex variations are natural variations in human sex, and not medical conditions that need corrected. This doesn't mean that any unpleasant symptoms related to an intersex variation can't ever be treated - in fact, it's important to the community to have that bodily autonomy to access whatever reproductive healthcare is needed - but it does mean treating our sexes as inherently normal and NOT trying to coercively "correct" them.

So in summary, demedicalization is fundamentally about autonomy. It is about considering natural human variations as such, rather than as sickness to be cured, about letting people determine for themselves whether any aspect of themselves is disordered, and the decision on whether or not to pursue treatment for anything being theirs alone. It is about trusting people to be reliable witnesses and narrators of their own subjective internal experiences, and about never forcing anyone to change any aspects of themselves, disordered or not, that aren't harming others. In short, it is about putting power back into the hands of disabled people. And that is what this blog is all about.

[sailor-cerise]

What's the point of the social model of disability?

My musings on the social model of disability, including what I think is a common misunderstanding and some criticism I have.

My understanding is that the social model of disability is not about claiming society is the only reason for suffering and limitations -- that most certainly is not true for many people -- but rather about why the disability prevents you from participating in society and what should be DONE about your disability.

The medical model: you are broken and you and doctors must work to "fix" you so that you fit in and be as normal as possible. You need to make yourself fit in. Accomodations are about making you as least different and most "productive" as possible, minimizing the differences others see and have to accommodate. There is one "right" way to be and you aren't it.

The social model: society should adapt to the people that live in it, including disabled people, and society should change to accommodate people living with disabilities. Accomodations are about putting you in equal ground with others. You should be empowered to live life as fully as possible, to interact with other people and the world not as a burden or an object of pity or an afterthought, but a PERSON.

When the social model says "society disables you", it's a criticism of how society treats disabled people and makes their issues bigger problems than they need to be, and pressures people to suppress their needs and appear "normal".

If society changed, I would still:

Have wildly inconsistent energy

Have intense pain sometimes (period pain, migraines, body aches)

Be unable to exercise vigorously in cold, dry weather

Require aids like tinted glasses and noise cancelling headphones

Require a lot of medications to feel well enough to do things I care about

BUT I would also:

Not be forced to give ALL my limited energy to work, leaving me with some for myself and my relationships and hobbies

Be able to take the time and treatments I needed to get throughout painful episodes

Not spend a ton of energy acting "normal" for the sake of keeping my job and family relationships, hiding my needs and pushing through in unhealthy ways

Rest without shame

Have my accomodations accepted without mockery or outrage or judgement

Have the supports I need to see doctor and go to physical therapy so I can do more of the activities I want to

Be able to more effectively manage my triggers, reducing the amount of pain and fatigue I deal with

When people say "society disables you", it's a common over-simplification, one I see from both people who are excited about the social model, and from those who are frustrated with the insinuation that the disability itself is trivial.

Yes, if society changed, many of us would still have limitations and pain and frustrations.

But the point is to remove those that are unnecessary obstacles to participating in society.

Barriers to voting, to going to the doctor, to eating food we like, to seeing our friends, to enjoying artwork, to relaxing, to being ourselves.

The social model isn't intended to say "the only thing causing us pain is society!"

It means "society should focus on alleviating our pain and struggles in ways that work for US, not on conformity at all costs and the appearance and performance of 'health'"

Also while this is my ramblings on it, I'm not pulling this out of my ass.

The language is, in my opinion, flawed. Specifically, they* separate out "impairment" and "disability" like so:

Impairment is a medical condition that leads to disability. Disability is the result of the interaction between people living with impairments and barriers in the physical, attitudinal, communication and social environment. For example, it is not the inability to walk that keeps a person from entering a building by themselves, but the stairs that are inaccessible to them.

Personally, I think the word "impairment" is more irritating and condescending than disability, but their point is that the physical or mental limitations of your condition aren't what holds you back from participation, but the lack of accomodations for them.

I expect this choice comes from things like the ADA definition of disability (emphasis mine):

a physical or mental impairment that substantially limits one or more major life activities

If the impact of your "impairment" (geez I really don't like that word...) no longer limits your major life activities, then by that definition, it's not a disability.

I do still think there are cases where this isn't true, that the limitations of your body/mind are too hard to be fully overcome no matter the supports, but I don't think there's any disability that couldn't be improved by society prioritizing meeting people where they are, and accommodating the different needs people have.

*"They" meaning a most sites I read talkingabout it, but specific definition from:

Social model of disability - People with Disability Australia

Auslan video Audio description Related content About disabilityTrainingResearchProjectsAbout usContact us Latest news Leading Change – A Web

Which also says:

A social model perspective does not deny the reality of impairment nor its impact on the individual. [...] For example, it is not the inability to walk that keeps a person from entering a building by themselves, but the stairs that are inaccessible to them.

The impairment still exists. You still can't walk or hear or see or deal with loud noises or get a full night's sleep every night or whatever else your symptoms/daily reality might be.

But the point is that you should have an equal chance to participate in life.

And back to the original question...

Why does this even matter?

I have mixed feelings, but these are the reasons I care:

It's hard to criticize something without shared vocabulary to talk about it. It gives us a framework for the criticism

We can never improve society if we don't have a goal in mind and an idea of our issues

I am fucking angry about the way the world treats disabled people and having an acknowledgement of the shittiness makes me feel seen

It helps me to stop blaming myself for not being able to get better

It helps people who are recently become/just finding out they are disabled accept it, shifting mindset from "I don't have a disability because that would mean I failed/am a failure/there is something less about me now" to "I do have a disability and I can't be 'normal' anymore and it's okay to be different".

I know disability isn't a bad word. But it feels like one to many people, and they don't change overnight. Having an off-ramp from the well-established path of ableism is important.

Issues I have with it:

Easily misunderstood and oversimplified to the point that it causes distress/harm

An empty sentiment if it's not backed up by a push for change

Too much emphasis on how we talk about it rather than how we fix it

The all-or-nothing/binary approach to medical model vs. social model that seems to be fairly common. I DO want medical help with many of my issues, and believing in the social model should NOT be considered antithetical to medical assistance

The word "impairment", apparently. TIL this about myself