I updated “Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life” with selections from “Histories of Violence: Neurodiversity and the Policing of the Norm – Los Angeles Review of Books” to further emphasize nuance and context.

Neurodiversity is a movement that celebrates difference while remaining deeply nuanced on questions of (medical) facilitation and the necessity of rethinking the concept of accommodation against narratives of cure. The added emphasis on neurology has been necessary in order to challenge existing norms that form the base-line of existence: the “neuro” in neurodiversity has opened up the conversation about the category of neurotypicality and the largely unspoken criteria that support and reinforce the definition of what it means to be human, to be intelligent, to be of value to society. This has been especially necessary for those folks who continue to be excluded from education, social and economic life, who are regarded as less than human, whose modes of relation continue to be deeply misunderstood, and who are cast as burdens to society.

Nonetheless, I think it’s fair to say that this enhanced perceptual field is an aspect of much autistic experience and something neurotypicals could learn a lot from, not only with regard to perception itself, but also as concerns the complexity of experience.

What is needed are not more categories but more sensitivity to difference and a more acute attunement to qualities of experience.

Source: Histories of Violence: Neurodiversity and the Policing of the Norm – Los Angeles Review of Books

I updated “Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life” and “Compassion is not coddling. Design for real life.” with a selection on stress and trauma from “Psychiatric Retraumatization: A Conversation About Trauma and Madness in Mental Health Services – Mad In America”.

People who enter services are frequently society’s most vulnerable-people who have experienced extensive trauma, adversity, abuse, and oppression throughout their lives. At the same time, I struggle with the word “trauma” because it signifies some huge, overt event that needs to pass some arbitrary line of “bad enough” to count. I prefer the terms “stress” and “adversity.” In the book, I speak to the problem of language and how this insinuates differences that are not there, judgments, and assumptions that are untrue. Our brains and bodies don’t know the difference between “trauma” and “adversity”-a stressed fight/flight state is the same regardless of what words you use to describe the external environment. I’m tired of people saying “nothing bad ever happened to me” because they did not experience “trauma.” People suffer, and when they do, it’s for a reason.

Source: Psychiatric Retraumatization: A Conversation About Trauma and Madness in Mental Health Services – Mad In America

I updated “Autistic Burnout: The Cost of Masking and Passing” with selections from “Wasting Energy – Finally Knowing Me: An Autistic Life”.

Masking is exhausting. Utterly utterly draining. I’ve had people say to me many times over the years “But WHY are you so tired? What have you been doing?” and I’ve been unable to work it out. Even in my 20s I used to collapse with exhaustion on a regular basis. The brutal truth is that for an autistic person simply EXISTING in the world is knackering – never mind trying to hold down a job or have any sort of social life. And many of the standard recommendations for “improving mental health” (such as seeing more people in real life, spending less time on the internet, sitting still and being “calm”) simply make matters worse – solitude, rest, and stimming are much more useful tools. We need a LOT of downtime in order to recover from what, for most folk, are the ordinary things of life.

And this is at the core of the problem of masking. The perpetual acting, the perpetual stress levels on a par with what most folk would feel when at a job interview, the huge physical effort of sitting still and coping with sensory overload, and the conscious process of trying to work out how to interact with other human beings eventually takes its toll. In the short term it can lead to a meltdown (as it did with me in the supermarket the other day). In the long term it can destroy mental health and lead to autistic burnout.

Many autistics mask for years, putting in huge amounts of work to try to fit in to the world. Those of us who were diagnosed very late avoided some of the therapies that essentially force autistics to mask by using punishment when they exhibit autistic behaviours, although we were often taught to “behave properly” and the cane in the corner of the headmaster’s study was a constant threat throughout our childhoods. Some autistics become so good at masking that when they present for diagnosis they are turned away or misdiagnosed and when they tell people they are autistic they are met with disbelief and invalidation.

Source: Wasting Energy – Finally Knowing Me: An Autistic Life

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

Rather, the entirety of the mental health field and the paradigm under which it operates is a modern-day religion rife with all the familiar problems and benefits that exist in any religion. Most importantly, however, there is hope if people are willing to move beyond what society tells us we “must” do. People have been healing from great pain for 200,000 years—the mental health professions have existed for less than 200. While there are some things we have learned, we need to stop trying to re-invent the wheel. People need love, support, community, to be heard, to be valued, to be validated, to have purpose, to have health and housing, to have nutrition both physically and emotionally—it is not rocket science and doesn’t become such just because we keep saying that it is.

People who enter services are frequently society’s most vulnerable-people who have experienced extensive trauma, adversity, abuse, and oppression throughout their lives. At the same time, I struggle with the word “trauma” because it signifies some huge, overt event that needs to pass some arbitrary line of “bad enough” to count. I prefer the terms “stress” and “adversity.” In the book, I speak to the problem of language and how this insinuates differences that are not there, judgments, and assumptions that are untrue. Our brains and bodies don’t know the difference between “trauma” and “adversity”-a stressed fight/flight state is the same regardless of what words you use to describe the external environment. I’m tired of people saying “nothing bad ever happened to me” because they did not experience “trauma.” People suffer, and when they do, it’s for a reason.

If patients willingly adopt the role of defectiveness, then how is the doctor doing anything harmful or wrong? People who grew up as the scapegoat, who believe they are dirty or defective or bad, who are ashamed of their existence or believe they should be someone they are not, who have led their entire lives being marginalized and discriminated against in society-these are the people who most frequently enter mental health services. They are also those most readily vulnerable to accepting these messages under the guise of treatment and care. It is not until people are willing to start to consider that, in fact, they are not defective in the least, rather, that they are just flawed and unique human beings adapting to incredible pain that they can start to actually believe in themselves enough to heal.

Of course, there is simply the existential issue of mental health professionals that may be unbearable for them to face: If I am not fixing a distinct and identifiable problem, what, then, is my purpose? If the real healing power I have is something that any human being could ostensibly provide, if willing, why did I spend all those years in school and possibly hundreds of thousands of dollars? If these are not specific diseases related to specific biochemical or genetic flaws, why have I specialized-and who doesn’t like feeling special? And, worse, if I am not addressing people with genetic illnesses and biochemical problems, what, really, am I doing when all I have to offer are drugs and technological interventions?

This problem is not unique to mental health professionals. Medical doctors are caught in a similar dilemma when it comes to obesity, heart disease, diabetes, chronic inflammation, and many autoimmune diseases, even cancer. What do these doctors do when they realize that these problems are almost entirely due to an industrialized diet largely based on corporate interests-the sugar industry, soy bean manufacturers, Monsanto-and that if people just ate the way humans are designed to eat, these problems mostly would not exist? And, of course, these issues are entirely intertwined with mental health problems! If these are not specific diseases related to specific biochemical or genetic flaws, why have I specialized? If these problems are not really genetic illnesses and biochemically-based problems, what, really, am I doing when all I have to offer are drugs and technological interventions?

A black man spends his life being marginalized and aggressed, dismissed because of his fear and pain-should he enter the system, he is no longer “less-than” because of his blackness, now he’s marginalized and dismissed as “schizophrenic.” A sexually-abused young woman who was told she “wanted it,” was blamed, and was never given the opportunity to be angry enters the system-she now is “borderline” and once again blamed for being too sexualized, for causing staff to behave in shameful ways, and condemned for her anger, even when it is taken out on herself.

Perhaps more than any other, the most common enactment is that associated with the individual who grew up with a narcissistic parent in constant need of adulation, intolerant of discomfort or self-reflection, and who was a master in the art of gaslighting.

We live in a society that values stoicism, complete control over one’s behaviors, lack of emotional expression, “politeness” at the expense of authenticity-I love New York!-and an eerie Stepford Wife-like ideal of conformity. Mental health professionals often are selected for their ability to represent these values. Those troublemakers who tell the truth, are spontaneous(otherwise called “impulsive”), who laugh or find humor in the darkness(or “inappropriate affect”), who refuse to conform(or my favorite, “oppositional”) are ostracized and pathologized for the threat they pose to propriety. They generally don’t make it through the training process. I know I almost didn’t. It is the Anglo-Saxon way. It also is what makes most of us completely miserable.

Source: Psychiatric Retraumatization: A Conversation About Trauma and Madness in Mental Health Services – Mad In America

when we assume that there is such a thing as books for girls and books for boys, we are continuing a tired and sexist narrative that has only furthered the power inequity that already exists within our society. We are creating a new generation of mansplaining, of groupthink, of toxic masculinity. Of girls only liking one thing, and boys liking another. Of men and women being from different planets. Of readers being shaped more by their assigned gender than their actual interests.

We are furthering the stereotype that boys don’t like to read about girls because they see little value in what girls do.

We are furthering the stereotype that boys don’t like to read about feelings because they are somehow above all of that.

We are furthering the stereotype of what it means to be a boy which translates into what it means to be a man and not seeing the incredible harm in that.

So I am wondering if we for once and for all, can we all agree that there is no such thing as a girl or a boy book? That kids need to be exposed to characters that inspire them, no matter their gender. That kids need to be exposed to characters that will expand their worldviews and invite them into new worlds that they knew little of before, no matter their gender. That kids need to be exposed to great books, without us adults thinking that they will only read a certain type of book based on what we see in front of us.

Source: On Boy Books and Girl Books – Pernille Ripp

Someone walks into your house and sees your many books on your many bookshelves. Have you really read all these? they ask. This person does not understand knowledge. A good library is comprised in large part by books you haven’t read, making it something you can turn to when you don’t know something. He calls it: the Anti-Library.

I remember once in college, the pride I felt about being able to write an entire research paper with stuff from my own anti-library. We all have books and papers that we haven’t read yet. Instead of feeling guilty, you should see them as an opportunity: know they’re available to you if you ever need them.

Source: The 5-Step Research Method I Used For Tim Ferriss, Robert Greene, and Tucker Max

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

I updated “Straws, Neurodiversity, and Disability” with a selection from “Forced Intimacy: An Ableist Norm | Leaving Evidence”.

Forced intimacy is a cornerstone of how ableism functions in an able bodied supremacist world. Disabled people are expected to “strip down” and “show all our cards” metaphorically in order to get the basic access we need in order to survive. We are the ones who must be vulnerable-whether we want to or not-about ourselves, our bodyminds and our abilities. Forced intimacy was one of the many ways I learned that consent does not exist for my disabled asian girl bodymind. People are allowed to ask me intrusive questions about my body, make me “prove” my disability or expect me to share with them every aspect of my accessibility needs. I learned how to simultaneously shrink myself and nonconsensually open myself up as a disabled girl of color every damn day.

Source: Forced Intimacy: An Ableist Norm | Leaving Evidence

I also embedded a video from a disabled straw user.