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

Interpretive phenomenological analysis of the data revealed four core themes in participants’ theory of mind experiences and strategies, all of which highlighted how a more accurate representation of autistic theory of mind is one of difference rather than deficit. For instance, data showed that autistic heightened perceptual abilities may contribute to mentalizing strengths and that honesty in autism may be less dependent on systemizing rather than personal experience and choice. Such findings suggest that future research should reexamine autistic characteristics in light of their ability to enhance theory of mind processing. Understanding how an autistic theory of mind is uniquely functional is an imperative step toward both destigmatizing the condition and advocating for neurodiversity.

Source: What am I thinking? Perspective-taking from the perspective of adolescents with autism – Gray Atherton, Ben Lummis, Susan X Day, Liam Cross, 2018

Via:

In the future, we will not publish Letters in which authors argue that an individual accused or found guilty of harassment is likely innocent because others have interacted with that person without incident; this argument is logically flawed. In addition, although some information about a person’s scientific achievements is at times necessary to establish context, we will not publish Letters in which authors argue that professional achievements have any bearing at all on the likelihood that the individual engaged in harassment.

Source: Editor’s note: Harassment policy | Science

Via: After Facing Criticism, a Top Scientific Journal Says: No More ‘But Look What Good He’s Done’ – Pacific Standard

The look what good they’ve done argument, on the other hand, is “bad logic” and too common, says Robin Leeds, who specializes in crisis communication and founded a political consulting firm, Winning Strategies LLC. “It’s really a distraction strategy,” she says, “that essentially demonstrates non-belief in the victim.”

Source: After Facing Criticism, a Top Scientific Journal Says: No More ‘But Look What Good He’s Done’ – Pacific Standard

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.

We resist, strongly, the idea that stress is best acted on at an individual, case-by-case level. This is a structural problem that can be changed with sufficient political will to change it, and we believe in fighting for that change.

We know that marketisation, casualisation and other workplace inequalities are key factors in stress levels among our members. We know that declining real terms pay and increased workloads are a factor. We believe that the higher education sector as a whole is systemically under-investing in staff, with knock-on impacts for all of us, and we don’t believe that this is anything other than a response to a political climate that has privileged metrics and rankings over human beings.

Source: Stress, workload and mental health | Sheffield UCU

CW: suicide

Results confirm previously reported high rates of suicidality in ASC, and demonstrate that ASC diagnosis, and self-reported autistic traits in the general population are independent risk markers for suicidality. This suggests there are unique factors associated with autism and autistic traits that increase risk of suicidality. Camouflaging and unmet support needs appear to be risk markers for suicidality unique to ASC. Non-suicidal self-injury, employment, and mental health problems appear to be risk markers shared with the general population that are significantly more prevalent in the autistic community. Implications for understanding and prevention of suicide in ASC are discussed.

Source: Risk markers for suicidality in autistic adults | Molecular Autism | Full Text

See also:

Autistic Burnout: The Cost of Masking and Passing