Wanted: hospitals and doctors’ offices that…
- are equity literate and conversant in neurodiversity, the social model of disability, intersectionality, and structural ideology
- understand and acknowledge autistic burnout
- understand the sensory overwhelm -> meltdown -> burnout cycle
- understand access intimacy
- communicate electronically; written communication is the great social equalizer
- offer electronic payment
- have websites
- provide medical records in the format requested
- provide portals, but don’t require their use
- include accessibility information on their websites
- provide a backchannel during sessions to ease sharing
- respect trauma
- respect patient expertise
- respect identity-first language
- design their offices and flow for neurological pluralism
- aren’t racist, sexist, ableist, or childist #MedicalAbleism #MedicalMisogyny #MedicalRacism #MedicalTrauma #PatientsRights #MedTraumaChat #DoctorsAreDickheads
- aren’t authoritarian
- and don’t gaslight #MedicalGaslighting
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
6 thoughts on “Wanted: Accessible, Equity Literate, Human Centric Care”
“You are a sickness,
Not human, any more,
Just a crusting scab,
Just a maggot-oozing sore.”
Midnight fever, 1995.