Normal Sucks: Author Jonathan Mooney on How Schools Fail Kids with Learning Differences

I’m a big fan of Jonathan Mooney’s neurodiversity advocacy. So much of the work of neurodiversity and disability advocacy is getting folks to reframe from the medical and deficit models to the social model. Mooney is good at this reframing.

Here are some selected quotes from a recent interview with Mooney at Longreads where he shares his journey through school and reframes deficiency as difference.

Reframe these states of being that have been labelled deficiencies or pathologies as human differences.

The ultimate thing we should be fighting for is to not have to pathologize yourself to get your individual needs met. Something’s wrong with a system that requires parents and children to say, “I am sick or defective.”

We need to have universally designed systems designed around the reality of human variance opposed to the myth of human sameness.

We privilege some brains over other brains. We privilege some bodies over other bodies. And that gets embedded in our institutions.

There is conscious and unconscious bias about people with a whole continuum of atypical brains and bodies. And when we judge someone’s intelligence based on their spelling and we rule out their capacities as a human being because of their bad handwriting…,we are participating in a subtle and yet very powerful form of institutionalized ableism.

Accommodation is fundamentally about not changing the person but changing the environment around the person.

It’s going to be not fixing what’s wrong with them that changes their life, it’s gonna be building on, celebrating, and scaling what’s right with them.

When we say that somebody “overcame” dyslexia, cerebral palsy, whatever it is, we imply that that state of being is inherently deficient and it’s a problem inside of them.

I didn’t overcome dyslexia; I overcame dysteachia.

It’s not a problem in the person; it’s not a problem with the difference; it’s a problem in the interaction between a difference and a context built for the myth that we should all be the same.

Elevate ableism as one of the injustices of our world.

I’m tremendously optimistic about the broad cultural movement around equity, diversity, and inclusion. And I think we need to hold on to that as a culture. And we need to demand that that core philosophical and ethical commitment to having a world that doesn’t just work for some, but works for all, starts to come into our systems and we to some real difference in our systems. I think we have to fight for that. It ain’t going to happen on its own.

Source: Normal Sucks: Author Jonathan Mooney on How Schools Fail Kids with Learning Differences

Mooney is an engaging and inspiring talker. Give the entire episode a listen.

More from Jonathan Mooney:

Wanted: hospitals and doctors’ offices that…

Wanted: hospitals and doctors’ offices that…

Despite increased spending on mental health treatment, mental illness disability and suicide rates have skyrocketed. “Perhaps more disturbingly,” notes clinical psychologist Noël Hunter, “recent evidence has demonstrated that as contact with psychiatric intervention increases, so too does completed suicide, suggesting the possibility that the current mental health system may be creating the very problems it purports to aid.” In Hunter’s recently published Trauma and Madness in Mental Health Services (Palgrave Macmillan, 2018), she asks, “Are we continuing to funnel money into a fundamentally broken system?”

Far fewer on the Left recognize that the psychiatric- industrial complex (which includes the American Psychiatric Association and its Big Pharma financial partners) is also devoted only to its own preservation and expansion, thus routinely exacerbating emotional suffering-this despite many individual practitioners who want to help their patients.

Hunter is a rare psychologist. She not only has extensive knowledge of the empirical research, but she herself was once diagnosed with serious mental illness, and she takes very seriously the insights of “experts by experience”-recovered ex-patients-who Hunter quotes throughout her book. Both objective and subjective sources make clear to Hunter that the essential cause for what is called serious mental illness is not some kind of biochemical or genetic defect but some kind of trauma, and that the essential remedy is healing from trauma. For critical thinkers who are not mental health professionals, Hunter’s assertions in Trauma and Madness in Mental Health Services may sound like simple common sense, but it is sense that is not common in the mental health profession.

In a scientific sense, terms like “schizophrenia” are completely meaningless-wastebaskets to toss people who are behaving in ways that appear bizarre to doctors. Often what causes people acting in unusual ways to become chronically dysfunctional are their doctors’ problematic reactions and “treatments.” In other words, it is common for the source of chronic dysfunction to be physician-induced (iatrogenic) trauma.

In the real world of psychiatric diagnoses, probably the most important criteria for whether you are diagnosed with schizophrenia or dissociative identify disorder (DID) is how much your doctor likes you, and Hunter was likable enough to get a DID diagnosis. For reasons of dogma, not science, trauma is taken seriously for DID but not for schizophrenia (in which one is simply seen as defective). So, Hunter considers herself relatively lucky, and one senses her “survival guilt.”

Professionals often waste their limited time obsessing over a diagnostic process that is scientifically invalid and unreliable. “Rather,” Hunter concludes, “what is more important is to take an individualized, collaborative, trauma-informed approach that is attuned to individual needs without making assumptions and considering the person’s subjective experiences as real and something to be respected.” It’s important, Hunter concludes, to help people find meaning and value in the adaptive nature of their atypical experiences.

Source: Politics and Psychiatry—Brave New Book on the Cost of the Trauma Cover-Up

Carlin was a far better therapist for critical thinkers than are the vast majority of my mental health professional colleagues. Shaming hopelessness as some kind of character flaw or, worse, psychopathologizing it as a symptom of mental illness only adds insult to injury. Hope missionaries ignore the reality that pathologizing hopelessness does not make critical thinkers more hopeful, only more annoyed.

I know many mental health professionals who espouse hope but who are broken and compliant with any and all authorities. In contrast, I know anti-authoritarians who, like Carlin, express hopelessness but who are unbroken and resist illegitimate authorities. Carlin modeled a self-confident rebellion against authoritarianism and bullshit, and he provided the kind of humor that energizes resistance.

I don’t know the exact moment when I became hopeless about my mental health profession, but my experience has been that one can be embarrassed by one’s profession for only so long before that embarrassment turns into hopelessness.

The symptoms of ODD include often argues with adults and often refuses to comply with authorities’ requests or rules. At that time, I was in graduate school for clinical psychology and already somewhat embarrassed by the pseudoscientific disease inventions of my future profession; and throwing rebellious young people under the diagnostic bus with this new ODD label exacerbated my embarrassment.

My embarrassment transformed into hopelessness as it became routine to prescribe tranquilizing antipsychotic drugs to ODD kids; to diagnose kids with mental disorders merely for blowing off school while their entire family was falling apart; and to prescribe Ritalin, Vyvanse, Adderall, and other amphetamines to six-year-olds who had become inattentive as their parents were engaged in a nasty divorce.

Achieving hopelessness about my profession had great benefits. It liberated me from wasting my time with authoritarian mental health professionals in efforts at reform; and it energized me to care solely about anti-authoritarians who already had their doubts about my profession and sought validation from someone within it. Embracing my hopelessness about my profession made me whole and revitalized me.

Witnessing a mental health profession that is fast on its way to achieving complete ignorance about the nature of human beings would simply have validated Carlin’s general hopelessness.

Source: Hopeless But Not Broken: From George Carlin to Adderall Protest Music

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

Anti-authoritarian patients should be especially concerned with psychiatrists and psychologists—even more so than with other doctors. While an authoritarian cardiothoracic surgeon may be an abusive jerk for a nursing staff, that surgeon can still effectively perform a necessary artery bypass for an anti-authoritarian patient. However, authoritarian psychiatrists and psychologists will always do damage to their anti-authoritarian patients.

Psychiatrists and psychologists are often unaware of the magnitude of their obedience, and so the anti-authoritarianism of their patients can create enormous anxiety and even shame for them with regard to their own excessive compliance. This anxiety and shame can fuel their psychopathologizing of any noncompliance that creates significant tension. Such tension includes an anti-authoritarian patient’s incensed reaction to illegitimate authority.

Anti-authoritarian helpers—far more commonly found in peer support—understand angry reactions to illegitimate authority, empathize with the pain fueling those reactions, and genuinely care about that pain. Having one’s behavior understood and pain cared about opens one up to dialogue as to how best to deal with one’s pain. Because anti-authoritarian mental health professionals are rare, angry anti-authoritarian patients will likely be “treated” by an authority who creates even more pain, which results in more self-destructiveness and violence.

It is certainly no accident that anti-authoritarian psychiatrists and psychologists are rare. Mainstream psychiatry and psychology meet the needs of the ruling power structure by pathologizing anger and depoliticizing malaise so as to maintain the status quo. In contrast, anti-authoritarians model and validate resisting illegitimate authority, and so anti-authoritarian professionals—be they teachers, clergy, psychiatrists, or psychologists—are not viewed kindly by the ruling power structure.

Source: “Don’t Be Stupid, Be a Smarty”: Why Anti-Authoritarian Doctors Are So Rare

We have a medical community that’s found a sickness for every single human difference. DSM keeps growing every single year with new ways to be defective, with new ways to be lessened.

The myth of normal is what’s broken, and the identity that, if you don’t fit it, that you are less than, that’s what’s broken. We need to reframe what we problematize, not bodies, not difference, but this pervasive imperative to be normal.

Disability industrial complex is all about what people can’t do. We spend most of our time trying to fix what they can’t do. When all we do is fix people the message we give to them is that they are broken.

We have created a system that has you submit yourself, or your child, to patient hood to access the right to learn differently. The right to learn differently should be a universal human right that’s not mediated by a diagnosis.

Source: The Gift: LD/ADHD Reframed – Ryan Boren

I do not use patient portals for messages. Getting providers to use email though is like pulling teeth. They’ve all been sold the line by medical records companies that portals are the only “secure” way to send messages. And while some portals may have encryption to help with privacy and security, some personal email accounts also have a feature to encrypt (the provider’s email should already be encrypted or they are running dangerously close to more HIPAA problems). You can read the letter I give my doctors on using email here.

Source: Common HIPAA Issues | Health as a Human Right

Both formal research, and autistic people’s own reports, clearly show that autistic health concerns-including mental health issues-are too often dismissed or misunderstood, and that autistic people are also more likely than the general population to have co-occurring health conditions.

It is only through participatory autism research that we have become aware of matters like the crisis-level rates of suicide and suicidal ideation in autistic people, while studies of commonly self-reported but poorly studied and understood co-occurring conditions like hypermobility or Ehlers-Danlos syndrome are only now emerging. If we are going to properly support autistic people of all abilities to achieve best possible health outcomes, our health care initiatives need autistic guidance.

I would like to see more of this autistic-informed policy integrated into autism education for medical professionals, for matters like accommodations during patient-professional interactions. We need more medical personnel to understand why autistic people-even those technically capable of holding a conversation-can have a debilitating fear of needles, may have difficulty with sensory-intensive procedures like MRIs or EEGs, may have trouble answering questions or self-reporting accurately due to processing, alexithymia, or interception issues, and may have meltdowns when overwhelmed. We must develop strategies for ensuring those autistic individuals are accommodated, so they can receive the care they deserve without being written off as “difficult.”

I would like to see more medical professional awareness about the sensory needs of autistic people both in general, and in medical environments. When my son was recently in the ER at Stanford University, he was given access to a lovely sensory “Imagination Station,” and in addition the flickering fluorescent lights in his room were turned off. Many autistic adults who heard about my son’s experience reported that they too would like access to these kinds of sensory accommodations, but such options, even when available, are usually reserved for children.

I would like to see more outreach to medical schools and other training programs about the need for more neurologists, behavioral psychiatrists, developmental pediatricians, and registered dietitians both in general, and who understand autism specifically. These scarcity of these specialists makes accessing health care even more difficult for autistic kids and adults.

I would like to see investment in “health passports,” like those developed by the UK’s National Autistic Society, to improve autistic people’s hospital and medical experiences. I would like to see encouragement to adopt and support models like the autism and healthcare toolkits and resources developed byAASPIREandUCSF’s Office of Developmental Primary Care, in delineating compassionate, respectful, and useful best practices for patients with developmental disabilities.

I would like to see all autistic people, including those with intellectual disabilities, treated with more respect by medical professionals. Autistic people must to be able to trust the professionals taking care of them if they are to tolerate anxiety-provoking medical environments-yet too often autistic people are not even addressed during in-person conversations about their own health, or they are spoken in a manner more appropriate for speaking to A Very Good Dog (as happened to my son while getting his flu shot just this week). In worst-case scenarios, dismissive attitudes can lead to tragedy, as with the recent death of 18-year-old Oliver McGowan. These attitudes must change, because my son’s life and those of his autistic community members are valuable, and should be treated that way.

Finally, I would like to see recognition that health care access gaps are even more pronounced for autistic kids and adults who aren’t male, autistic people of low socioeconomic status, and autistic people of color, due to well-documented barriers including accessing formal diagnosis, and thus receiving proper care and accommodations. We need investment in easy-read and multilingual autism and health care information. Ideally, we also need investment in “community ambassadors” who can translate and/or advocate for people who may have multiple barriers to resources, and thus to effective self- or family advocacy.

Source: SQUIDALICIOUS: My Comments to the September 2018 IACC on Autism and Health Care Issues

When AMASE conducted a survey about the mental health of autistic people around Scotland, we found that many had been excluded by such simple things as practices insisting on telephone contact

Source: Fergus Murray: Why ‘nothing about us without us’ should be an Autism policy principle | CommonSpace

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

 

Straws, Neurodiversity, and Disability

As a society, we are far too quick to write off the concerns of marginalized groups as insignificant or inconvenient.

Source: There’s an unexpected downfall to banning plastic straws. Here’s what to consider.

When disabled people tell you what’s up, listen. Design and policy are tested at the edges. Thinking you can solve a complicated accessibility issue you’ve never previously pondered in the span of a Twitter thread is ableist, dismissive, and condescending. We live this. We live the medical ableism, medical misogynymedical racism, medical traumapolitics of resentment, behaviorism, and inspiration porn. We know how accessibility degrades to accommodation degrades to forced intimacy, resentment, exclusion, and shame.

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

What people don’t understand with bans like this is that having to ask for a plastic straw puts an unfair burden, and scrutiny, on people with disabilities. They should not have to prove a medical need or even disclose their disability status when having a fun night out with friends. This is not hospitality.

Source: Why Disabled People Need Plastic Straws – Eater

Instead of negating and speaking over us…

Listen to lived experience. If you consider yourself a liberal, if you care about social justice, get structural, get social, get equity literate, and listen. Excerpted below are perspectives from autistic and disabled people and our allies.

Suddenly Leo jumps up from the table again and says to his father, “Green straw?” It is not yet time for his first green straw of the day, but he will get one before the school bus pulls into the driveway— one of tens of thousands of wide, bright green Starbucks straws that Leo has used over the years for the purpose of stimming (self-stimulation), one of the things that autistic people do to regulate their anxiety. They also clearly enjoy it. When nonautistic people do it, it’s called fidgeting and it’s rarely considered pathological.

A red straw from Burger King can occasionally fit the bill, or a blue one from Peet’s. Clear straws from Costco just don’t cut it. But a green straw from Starbucks is Leo’s Platonic stim. If Shannon allowed him to do so, he would take a green straw to bed with him, or even better, a pair— one between his lips and the other in his toes. He would stim in the bath, on the toilet, and jumping on the trampoline.

Source: Silberman, Steve. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity (p. 48). Penguin Publishing Group. Kindle Edition.

It’s not easy or pleasant asking for help in public spaces like restaurants, because you never know what attitudes you’ll encounter: indifference, pity, or outright rejection. I don’t see these types of help as special treatment or inspirational for someone to surreptitiously post on social media as feel-good clickbait; they’re simply examples of excellent hospitality.

Starbucks’s announcement — and the news that Vancouver and Seattle recently banned plastic straws, with other cities, like New York and San Francisco, contemplating proposals — struck a raw nerve with me for several reasons (and I won’t even get into the problems of recyclable plastics and greenwashing):

1. Plastic straws are considered unnecessary items used by environmentalists as a “gateway plastic” to engage the public on a larger conversation about waste. According to Dune Ives, executive director of the Lonely Whale Foundation, “Plastic straws are social tools and props, the perfect conversation starter.” But one person’s social prop is another person’s conduit for nutrition. It’s as if people who rely on straws — older adults, children, and disabled people — don’t matter and that our needs are less important than the environment. I feel erased by these attitudes.

2. Plastic straws are ubiquitous, whether we like it or not. Once you have something that provides access, it is difficult and harmful to take it away from a marginalized community that depends on it. I live in a world that was never built for me, and every little bit of access is treasured and hard-won. Bans on plastic straws are regressive, not progressive.

The plastic straw ban is symptomatic of larger systemic issues when it comes to the continual struggle for disability rights and justice. The Americans with Disabilities Act (ADA) turns 28 next week, on July 26, and yet people with disabilities continue to face barriers at eating establishments. The ADA is considered by many small businesses (and the National Restaurant Association) as a source of frivolous lawsuits brought by greedy lawyers and clients. Ableist attitudes that cast disabled people as “fakers” or “complainers” obscure the very real and painful experiences of not being able to eat and drink freely.

As demand increases for alternatives to plastic, so do the voices from the disability communitysharing their concerns about how these bans will create additional labor, hurdles, and difficulties. On social media, many disabled people have been sharing their stories and keeping it 100 percent real. I observed and experienced all sorts of microaggressions and outright dismissal of what disabled people are saying online.

This is the experience of living in a world that was never built for you: having to explain and defend yourself while providing infinite amounts of labor at the demand of people who do not recognize their nondisabled privilege. There are days when I want to put this on repeat: “Believe disabled people. Period.” I refuse to apologize or feel shame about the way my body works and how I navigate in the world. Everyone consumes goods and creates waste. We all do what we can to reduce, reuse, and recycle. We should recognize that different needs require different solutions. I’m not a monster for using plastic straws or other plastic items that allow me to live, such as oxygen tubes.

What people don’t understand with bans like this is that having to ask for a plastic straw puts an unfair burden, and scrutiny, on people with disabilities. They should not have to prove a medical need or even disclose their disability status when having a fun night out with friends. This is not hospitality.

Source: Why Disabled People Need Plastic Straws – Eater

Every few months, another city, state, or country announces that it’s banning the use of plastic straws. These policies are meant to lead the way in removing plastics from the ocean, but, according to our best estimates, straws are not a major source of marine plastic pollution, and such laws are unlikely to have a noticeable affect on the levels of plastic entering our waters. The proposed bans do, however, have the unintended effect of making restaurants less accessible for many disabled people, while revealing the ableism embedded in far too much consumer-based environmentalism.

There’s a better way. Instead of bans, we should shift all our use of disposable plastics from opt-out to opt-in. At the same time, let’s recognize the limits of focusing on consumer choice. Want to reduce plastics in the ocean? Make the producers pay for their waste.

For Peters and many other disabled people, the fixation on banning straws feels arbitrary. As I wrote for Pacific Standard last year, straws provide a simple, accessible means for many disabled people to drink. My son, who has Down syndrome, is one of them. His mastery of drinking through ubiquitous plastic straws makes every restaurant and gas station a place where he can a drink without worrying. Straw bans erode that easy accessibility. Moreover, every time people like me raise the importance of plastic straws, we get bombarded with well-meaning attempts to inform us about the exciting new world of metal, glass, bamboo, paper, and compostable straws. There’s a kind of implicit dismissiveness behind the idea that people who rely on plastic straws for hydration might not ever have considered alternatives. For my son, as with many others, plastic straws offer a remarkable combination of affordability, tensile strength, and flexibility. While some disabled people can use or even prefer harder reusable straws, metal, wood, or glass straws can be dangerous, uncomfortable, or ineffective for others. Compostable straws made of vegetable matter have a similar feel as standard plastic straws (and my son likes them), but they are vastly more expensive than plastic straws and raise concerns about food allergies.

There’s a real tension between consumer-based environmentalism, and the need to maintain and expand accessible options for disabled consumers, which often involve plastic. It’s good to raise awareness about waste, but I’ve been struck over the last year by how often conversations around straws quickly grow hostile. People are so eager to tell me about other kinds of straws, assuming we haven’t tried or are woefully uninformed. I wish these people might learn to trust that disabled people, as disability scholar Kim Sauder recently tweeted, generally know their needs and how to meet them-unless they ask for advice.

Let’s put our efforts where the money is, rather than shaming disabled consumers who just want an accessible drink of water.

Source: Banning Straws Won’t Save the Oceans – Pacific Standard

Here’s the problem: I need every restaurant and gas station in America to have straws, preferably plastic and bendy. My son, a 10-year-old boy with Down syndrome, has never quite mastered that complex series of motions to drink consistently from the lip of the cup. What he can do, though, is curl his tongue around a straw and create appropriate suction to drink, which was quite the triumph when he first learned it. A whole world of easy hydration opened to us. My family is not alone. Straws are a wildly successful example of assistive technology for millions of people with diverse abilities, all of whom are best served by ubiquitous straws. If Grenier gets people to stop sucking, what about my son?

There’s a deep tension between environmental consumerism and accessible consumerism. Many disabled people have come to rely on prepackaged foods, single-serving products, plastic cups, and yes, straws. On the other hand, there are those in the environmental movement who use shame to push people toward better individual decisions for the environment. Last year, a Twitter user named Nathalie Gordon posted a picture of plastic wrapped pre-peeled oranges, taunting: “If only nature would find a way to cover these oranges so we didn’t need to waste so much plastic on them.” It rapidly went viral and today has over 100,000 retweets and likes.

But for many disabled people, these pre-peeled oranges were wonderful. Kim Sauder, who is both disabled and a disability studies scholar, wrote a retort to Gordon, explaining, “As a person with limited hand dexterity, I look at this and see an easier way to eat healthy food.” Sauder, over email, told me that variations on the orange story keep re-appearing; recently, she heard folks yelling about plastic-wrapped peeled avocados. For her, straws and the #stopsucking campaign are part of the same pattern. As Sauder says, “The battles that environmentalists choose to wage are small and focused on products whose removal disproportionately affects disabled people.” Sauder understands why focusing on small things, especially those perceived as unnecessary, is easier than looking at the big picture. Still, she’d like us to focus on “the overall use of plastic,” even though that’s a tougher and more ambitious conversation. We need, Sauder says, to emphasize “systemic change rather than a perceived small sacrifice.”

People advocating for more environmentally friendly systems need to think about the ways that diverse people access the world. Before you eliminate a consumer system for ecological reasons, remember that many folks rely on convenient technologies, however environmentally unfriendly. That means persuasive messaging must avoid shaming those who need the technology. Because I want us to all stop sucking, but mostly, I want my son to have a drink.

Source: Saving the Oceans With My Son and Adrian Grenier – Pacific Standard

Disabled people who shared their concerns, frustrations and criticisms of the straw ban on Twitter, many attempting to patiently explain why they are a necessity for some, have received hostility from many and support from few. The ‘just curious’ want to know why the alternatives aren’t good enough for disabled people and despite the abundance of articles, handy info graphics and tweets addressing that, seem incapable of finding the information out for themselves. Or perhaps it’s because those aren’t detailed enough and don’t explain exactly what is ‘wrong’ with the disabled person that prevents them from drinking without a straw.

If you write policy as if disabled people do not exist and as if discrimination against disabled people does not exist, then you almost certainly write discrimination into your policy.

Non-disabled people have questions and it is my job to answer them. This unasked for, unpaid position is one I was given when I became disabled. One moment they are curious about why some disabled people need straws, the next it will be something else.

If you spend time on social media, you may have noticed disabled people who don’t use straws understand why some disabled people do – without knowing the specific reasons.

Though the specifics of our situations differ in important ways and are affected by components of our identities beyond disability, the experience of being disabled in a society that excludes, devalues, demeans, objectifies, dehumanizes, degrades and pities disabled people, is something we all have some familiarity with. Our struggle against it is what unites us, not our particular medical diagnosis or accessibility needs.

Source: Curiosity: Vancouver’s Straw Ban – Another Barrier and Another Excuse For Non-Disabled People to Shame, Marginalize, Interrogate and Demonstrate They Don’t Care About Discrimination Against Disabled People | mssinenomineblog

A soggy paper straw increases the risk of choking. Most paper and silicone alternatives are not flexible, and this is an important feature for people with mobility related impairments. Metal, glass and bamboo straws present obvious dangers for people who have difficulty controlling their bite, as well as those with neurological conditions such as Parkinson’s. Some disabled people use straws when drinking coffee or eating soup, yet most of the alternatives, including the leading biodegradable straw, are not suitable for drinks over 40°C. In addition, re-useable straws in public places are not always hygienic or easy to clean.

Source: Guest Blog: Action on plastics shouldn’t make life suck for disabled people – Greenpeace Canada

But making disabled people pay for something that’s available to everyone else for free is a type of tax. While it’s not necessarily an expensive tax, these types of things add up, and implementing a policy that makes the simple act of drinking prohibitive to certain groups sets a bad precedent.

“We need to make straws accessible to those who need them,” she says. “Don’t turn them into a medical item, which will negatively affect availability and lead to increased expense and stigma.”

What makes the entire debate over straws that much more confusing is the fact that disposable straws don’t actuallycontribute much to the abundance of plastic waste relative to other items in the ocean. So by proposing a ban on them, we’re asking disabled people to sacrifice a lot in order to gain just a little in the fight for environmental health. And by doing that, we’re demonstrating a frightening lack of empathy.

As a society, we are far too quick to write off the concerns of marginalized groups as insignificant or inconvenient.

Source: There’s an unexpected downfall to banning plastic straws. Here’s what to consider.

“We’re really kind of vilifying people who need straws.” Other environmentalists aren’t sure that banning straws is gonna do much, and point out that banning straws is not an entirely rigorous approach to global systems change, considering that a widely cited estimate for the magnitude of the problem was, umm, created by a smart 9-year-old.

All this to say: The straw is officially part of the culture wars, and you might be thinking, “Gah, these contentious times we live in!” But the straw has always been dragged along by the currents of history, soaking up the era, shaping not its direction, but its texture.

The invention of American industrialism, the creation of urban life, changing gender relations, public-health reform, suburbia and its hamburger-loving teens, better living through plastics, and the financialization of the economy: The straw was there for all these things-rolled out of extrusion machines, dispensed, pushed through lids, bent, dropped into the abyss.

You can learn a lot about this country, and the dilemmas of contemporary capitalism, by taking a straw-eyed view.

Source: How the Disposable Straw Explains Modern Capitalism – The Atlantic

“We’re really kind of vilifying people who need straws or forgetting about them completely — let’s be honest — in encouraging shaming people who are asking for them.”

“Where do I get that straw? Are straws then going to be something you buy at a medical supply store? And as soon as you do that they become more expensive and they become less accessible,” says Peters, on a fixed income of disability benefits she estimates at $1,100 per month.

“You’re just adding that cost to me.”

Source: Anti-straw movement isn’t considering people with disabilities, advocates say | The Star

I already have a difficult time with environmentalism being the only global issue that some people fall on their sword for, especially given the many humanitarian crises around the world. (Do you think talking to me about plastic straws makes you look woke?) But truly addressing waste in the environment by disabled and marginalized people may require looking into the expansion and affordability of services that are made available to disabled people.

Environmentalism can be used as a shield. Kind of the “All Lives Matter” of advocacy but true activists know that it requires more than simply recycling plastics or banning straws, but racial, social, economic, and disability justice to make true strides to environmental stewardship. People for whom it is a struggle to live day to day aren’t going to invest emotional, financial or logistical resources to thinking about the next 100-200 years. So, sorry, you may have avoided taking sides on poverty, the minimum wage, healthcare or Black Lives Matter, but you’re going to have to care about people that are different from you. The environment requires it.

Source: Being Disabled isn’t Eco Friendly: Get Off Our Backs and Put In The Work — Crutches & Spice

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 humansare 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

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