Simply accommodating people in systems that were never designed for their survival is inherently inequitable. We must understand how things got this way and explicitly address the systemic imbalance of power and advantage in our approaches to health equity.
I updated “Wanted: hospitals and doctors’ offices that…” with selections on access intimacy from “The Doctor and Nurse Who “Got It” | Health as a Human Right” and “Access Intimacy: The Missing Link | Leaving Evidence”.
I also added the selection from “The Doctor and Nurse Who “Got It” | Health as a Human Right” to “Accessibility, Access Intimacy, and Forced Intimacy”.
This is the story about a doctor and nurse I once had and how they “got it.”
“Getting it” isn’t necessarily something that you can define. It’s ineffable. It’s more of a feeling than a specific action. For me, it’s a connection that runs deeper than the diagnosis, the medical terminology, the treatments proposed. It’s a sense of being listened to and really heard. It’s feeling of being truly cared for. It’s a sense of empathy or at least a willingness to immerse oneself in my world as a patient, to feel and see what I face. When I think of my doctor and nurse who “got it”, I remember the sense of safety and calm they offered me and knowing that I would be okay. To each patient surely it may mean something different. But for me “getting it” gives me the ability as a patient to breathe, and perchance even to live.
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.
We have autistic children who need us to support them as architects of their own liberation against the schools and clinicians and institutions and police and prosecutors who would crush and destroy them.
Why are there greater mental health stresses on autistic people from gender-minority groups? To quote from the research paper,
“The increased rates of mental health problems in these minority populations are often a consequence of the stigma and marginalisation attached to living outside mainstream sociocultural norms (Meyer 2003). This stigma can lead to what Meyer (2003) refers to as ‘minority stress’. This stress could come from external adverse events, which among other forms of victimization could include verbal abuse, acts of violence, sexual assault by a known or unknown person, reduced opportunities for employment and medical care, and harassment from persons in positions of authority (Sandfort et al. 2007).”
I updated “Wanted: psychologists, psychiatrists, neuropsychiatrists, and neurologists who…” with selections from “SQUIDALICIOUS: My Comments to the September 2018 IACC on Autism and Health Care Issues”.
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.
Physicians and software developers,
Check your hubris with checklists.
Had a nice chat this afternoon with Boston Children’s Hospital’s inpatient neuroscience folks on autism, the social model of disability, identity first language, and designing for pluralism. The best hospital onboarding I’ve experienced.
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.
There are a great many inaccessible doctor’s offices. There are very few offices that post accessibility information on their web sites.
Society insists on making education, healthcare etc into a sensory hell, and we have to navigate it. Headphones, sunglasses, different clothing, etc can make a big difference. That’s really cheap to achieve for a lot of us, with a small budget from a provider. Hold that thought….that it’s really cheap to achieve for a lot of us ….because it is. If you know what you’re doing. If you ask the autistic person what helps, after having autism training from autistic people, so you know your subject.