Tag: disability

I updated “Wanted: hospitals and doctors’ offices that…” with selections on access intimacy from “The Doctor and Nurse Who “Got It” | Health as a Human Right” and “Access Intimacy: The Missing Link | Leaving Evidence”.

I also added the selection from “The Doctor and Nurse Who “Got It” | Health as a Human Right” to “Accessibility, Access Intimacy, and Forced Intimacy”.

This is the story about a doctor and nurse I once had and how they “got it.”

“Getting it” isn’t necessarily something that you can define. It’s ineffable. It’s more of a feeling than a specific action. For me, it’s a connection that runs deeper than the diagnosis, the medical terminology, the treatments proposed. It’s a sense of being listened to and really heard. It’s feeling of being truly cared for. It’s a sense of empathy or at least a willingness to immerse oneself in my world as a patient, to feel and see what I face. When I think of my doctor and nurse who “got it”, I remember the sense of safety and calm they offered me and knowing that I would be okay. To each patient surely it may mean something different. But for me “getting it” gives me the ability as a patient to breathe, and perchance even to live.

Source: The Doctor and Nurse Who “Got It” | Health as a Human Right

Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years. It could also be the way your body relaxes and opens up with someone when all your access needs are being met. It is not dependent on someone having a political understanding of disability, ableism or access. Some of the people I have experienced the deepest access intimacy with (especially able bodied people) have had no education or exposure to a political understanding of disability.

Access intimacy is also the intimacy I feel with many other disabled and sick people who have an automatic understanding of access needs out of our shared similar lived experience of the many different ways ableism manifests in our lives. Together, we share a kind of access intimacy that is ground-level, with no need for explanations. Instantly, we can hold the weight, emotion, logistics, isolation, trauma, fear, anxiety and pain of access. I don’t have to justify and we are able to start from a place of steel vulnerability. It doesn’t mean that our access looks the same, or that we even know what each other’s access needs are. It has taken the form of long talks into the night upon our first meeting; knowing glances shared across a room or in a group of able bodied people; or the feeling of instant familiarity to be able to ask for help or support.

Source: Access Intimacy: The Missing Link | Leaving Evidence

Recognizing being autistic as who we are (identity) and how we exist in the world (experience, including negative, painful, and unwanted experiences) are not mutually exclusive or contradictory. Neurodiversity and Disability Justice, taken together, are indeed celebrations of who we are and how we exist in the world. They are also movements rooted in lived experience, which ask us to understand and engage with the many ways we relate to our bodies and brains, inside our own minds, and in social context.

We have protests to stage, driven by the fuel of our righteous anger. We have speeches to make, written from the soaring pleas of our individual and collective trauma, and our wildest dreams of joy and freedom and love. We have cultural narratives to rewrite because they really do hate us and they really will kill us, and if we’re going to rewrite the narratives, then there’s no reason to hold ourselves back from our most radical and defiant rewritings. We have autistic children who need us to support them as architects of their own liberation against the schools and clinicians and institutions and police and prosecutors who would crush and destroy them.

We’re going to need our anger and our public celebrations of stimming and our complicated, imperfect, messy selves for this long and hard road, because we need all of us, and all of our tactics and strategies, to keep a movement going and ultimately, to win.

Source: Autistic Hoya: The neurodiversity movements needs its shoes off, and fists up.

I think that when people insist on saying “but you’re a person first!” and that people don’t acknowledge my disability first, that can lead to accommodations being an afterthought. When folks continue to separate my disabilities from my personhood, they aren’t thinking about what accommodations I need because they’re too busy trying to NOT think about my disabilities.

Source: 8 Reasons I Prefer Identity-First Language | Journey of IsaJennie

I updated “Straws, Neurodiversity, and Disability” with selections from “051: Alice Wong Says #suckitableism — boss barista”.

The straw ban really is visceral. It really hit me in the gut because this is about a daily activity: drinking. If that was threatened by, if your right to drink and eat was threatened, I mean, it’s very real. And I think what’s really-and it’s not exaggerated, right-I think it’s this is what’s really sad is that people think, “Oh, don’t worry about it.” I’ve had so many non-disabled people online tell me, “Don’t worry. You know, these bans, these exemptions, you’re gonna be fine, you know? There’s no way you would be denied a straw.” And I’m just like, if you just kind of understood what it’s like to be disabled and how every day, even with an apparent visible disability like mine, you are constantly scrutinized. And the microaggressions are just so real that people just assume that everything is going to be OK and that we should all-pun intended-suck it up for the greater good. And I think that’s what’s really missing is that the conversation has always been about if you’re not with us, you’re against us. And we’re saying this is just another erosion in our way to participate in public, in our ways to be part of society.

Some of my friends online have already shown me these little signs posted at restaurants that are really passive-aggressive about, “We’re not serving, we’re not providing any straws anymore because we care about the environment. Thanks anyway!” People are actually being really proud of not providing straws, and that, to me, is like another sign that you know- Let’s say, people saying, “Straws are bad,” and they say, “Oh, people with disabilities should bring their own straws.” So let’s say they bring their own straws and start using them? In this kinda climate, you can imagine the kind of like possible harassment or criticism they’ll get just for using a straw in a public space. If you look at Santa Barbara, where they have one of the most punitive bans with really steep fines and even jail time for establishments that provide plastic? I mean that’s really where you’re creating conditions that send a message to people with disabilities, older adults, all kinds of people that may need straws that your way of life is not welcome. Your way of life is not normative. And what do you do with that? You just basically are marginalizing us, shoving us away, and telling us that we don’t belong in the same place as you do.

And this is you know, 18 years after the American with Disabilities Act, after decades of disability rights activism that really fought against segregation and against the days where there were laws called Ugly Laws. So I’m not sure if you realize this, but in the old days, there were laws that disabled people and all kinds of people were not allowed in a public space because they affected people. Just their mere existence made people uncomfortable. And I really do see a connection between these straw bans and these kinds of historic laws that discriminate.

Source: 051: Alice Wong Says #suckitableism — boss barista

I updated “The Segregation of Special” with selections from ““Special needs” is an ineffective euphemism”.

Although euphemisms are intended to put a more positive spin on the words they replace, some euphemisms are ineffective. Our study examined the effectiveness of a popular euphemism for persons with disabilities, special needs. Most style guides prescribe against using the euphemism special needs and recommend instead using the non-euphemized term disability; disability advocates argue adamantly against the euphemism special needs, which they find offensive. In contrast, many parents of children with disabilities prefer to use special needs rather than disability. But no empirical study has examined whether special needs is more or less positive than the term it replaces. Therefore, we gathered a sample of adult participants from the general population (N = 530) and created a set of vignettes that allowed us to measure how positively children, college students, and middle-age adults are viewed when they are described as having special needs, having a disability, having a certain disability (e.g., is blind, has Down syndrome), or with no label at all. We predicted and observed that persons are viewed more negatively when described as having special needs than when described as having a disability or having a certain disability, indicating that special needs is an ineffective euphemism. Even for members of the general population who have a personal connection to disability (e.g., as parents of children with disabilities), the euphemism special needs is no more effective than the non-euphemized term disability. We also collected free associations to the terms special needs and disability and found that special needs is associated with more negativity; special needs conjures up more associations with developmental disabilities (such as intellectual disability) whereas disability is associated with a more inclusive set of disabilities; and special needs evokes more unanswered questions. These findings recommend against using the euphemism special needs.

Source: “Special needs” is an ineffective euphemism

I also linked to this tweet in the section about identity and community.

Writing is too important because, though forms and structures will differ, writing is the path to power for those born without power. This importance lies not in how to write a “five‐paragraph essay” or a “compare and contrast” book review but in the capability to clearly communicate visions both personal and collaborative. Whether the work is a tweet that generates action when that is needed, or a text message to an employer, or the ability to convince others in the political realm, or the expression of one’s identity in a form that evokes empathy in those without similar experience, “communicating” “well” is a social leveler of supreme importance.

In both cases, methodology become less important than process. Our students read on paper, or through audio books, or through text‐to‐speech, or by watching video, or by seeing theater – or by observing their world. They write with pens, keyboards large and small, touchscreens, or by dictating to their phones or computers, or by recording audio, or by making videos, or by writing plays or creating art, or playing music. We do not limit the work by attacking those with disabilities or even inabilities – or even other preferences, because that robs children of both important influences and of theira individual voices. Multiplicities are an intention: We build the best collaboration, the deepest learning, when we expand the opportunities for complex vision.

Thus we begin by moving the teaching of writing from the training of a specific skill set toward an interpersonal art form that flows from students and builds communities. Then, through the reimagining of teaching places into “learning spaces,” we craft “studios” where all the technologies of school – time, space, tools, pedagogies – liberate and inspire rather than deliver and test. Then, using those recrafted technologies, we allow communication learning to flow.

Source: Socol, Ira. Timeless Learning: How Imagination, Observation, and Zero-Based Thinking Change Schools (Kindle Locations 3725-3739). Wiley. Kindle Edition.

I updated “Transitioning from invisible to visible disability” with a selection from “I’m Not ‘Bound’ To A Wheelchair; I Was Freed By One | HuffPost”.

People with mobility challenges use mobility aids; they aren’t confined or bound by them. They are tools, not traps. We are no more held back by them than is someone using a plane or boat to cross an ocean. They are all simply means we use to get places we wouldn’t be able to navigate without them.

I regret not acknowledging my need for help earlier. I wish I had not equated a walker with defeat or shame. I now talk about walkers, wheelchairs and other disability aids with anyone who will listen in hopes of destigmatizing them and the people who use them. Freedom, not confinement. Tools, not traps. I will keep repeating this until everyone who needs to break free feels comfortable using them.

Source: I’m Not ‘Bound’ To A Wheelchair; I Was Freed By One | HuffPost

I updated “Straws, Neurodiversity, and Disability” with selections from “Starbucks’ Plan to Ban Straws Will Harm Disabled People | Bitch Media”.

Mentioning the effect that banning straws might have on disabled people has become a dangerous proposition. On social media, the anti-straw brigade lectures about alternatives disabled people are already aware of or shames disabled people for needing to drink. “Quit harming the environment because you can’t take care of your own needs,” said one helpful commenter. “Sorry, the trouble cleaning and inconvenience still doesn’t trump the damage caused by plastics,” said another.

Picking a fight over straws may seem nonsensical, but the larger low-waste and zero-waste movements, which tend to be overwhelmingly white and nondisabled, frequently single out products that benefit the disability community, like straws or pre-cut fruits and veggies, as a wasteful use of natural resources. It’s a two-part logic: One, the planet’s resources are limited and growing scarcer, and two, the way to control that is by cutting back on the use of nonrenewables. This does little to explore _which humans_are using the majority of resources on Earth and where the real choke points of waste lie. And it feeds insidious attitudes about who should be “allowed” to use the resources that are available.

The “green lifestyle” can come at the expense of disabled people who are often already living low-impact lifestyles by default. (After all, disabled people can be twice as likely to live in poverty as nondisabled people.) When environmentalists promote cutting certain products out of our lives, things that are useful for disabled people are often first on the chopping block.

The idea that disabled people are taking up space and resources they don’t deserve feeds the vitriol aimed at those who voice concerns about inclusivity and zero/low-waste causes. It also contributes to rhetoric around physician-assisted suicide, abortion for disability, healthcare rationing, and other fraught topics.Embedded in all of them is the belief that disabled lives are not worth living, and accommodating disabled people is not worth the resources. The devaluation of disabled people deprives the environmental movement of allies, including those who agree that the planet is in a state of crisis and urgent action is needed. Disabled people, particularly disabled people of color, are in many ways canaries in the coal mine because environmental injustice hits their communities first.

Rather than being considered burdens, disabled people should be viewed as incredibly valuable resources for conversations about leading better lives. A lifetime of having to hack, adapt, and subvert a society that says you don’t belong provides a considerable array of skills for rethinking the way we use natural resources.

Source: Starbucks’ Plan to Ban Straws Will Harm Disabled People | Bitch Media

I updated “Transitioning from invisible to visible disability” with selections from “When Disability Is Misdiagnosed as Bad Behavior – Pacific Standard”.

Annie Segarra, who makes terrific YouTube videos about the intersections of disability with race, gender, and other aspects of identity, recently kicked off a viral Twitter thread concerning the constant barrage of micro-aggressions that she notices every time she gets out of her wheelchair. Thousands joined the thread to share their experiences: Anyone who uses accessible parking but who doesn’t look sufficiently disabled or who only uses their wheelchair sometimes has encountered the “Good Samaritan” stranger who demands that they prove their disability. It happens a lot in parking lots, because accessible parking spaces are hotly contested proving-grounds for disability.

Source: When Disability Is Misdiagnosed as Bad Behavior – Pacific Standard