Accessibility, Access Intimacy, and Forced Intimacy

These pieces on access intimacy and forced intimacy by Mia Mingus very much resonate with my experience. Forced intimacy is the continuous submission to patient hood required to access the right to learn, work, and live differently. K-12 SpEd families, higher ed students, and workers needing accommodations regularly experience forced intimacy. Forced intimacy “chips away at your soul. Every box you tick, every sentence about your ‘impairment’ and ‘needs’ becomes part of the narrative of your identity.

Forced intimacy is a cornerstone of how ableism functions.” “Forced intimacy is the opposite of access intimacy.” “Access intimacy is that elusive, hard to describe feeling when someone else ‘gets’ your access needs.” That feeling is rare in the abundantly ableist medical and deficit models, though I have experienced it a few times, notably with neuropsychiatrists who noticed and met my sensory needs with a quiet, no-big-deal attitude. They understood that compassion and good user experience make for better data and better outcomes.

My moments of access intimacy are accompanied by floods of relief. The usual mountain of anxiety, miscommunication, and empathy gaps need not be scaled. “Your body relaxes and opens up with someone when all your access needs are being met.

My most profound moments of access intimacy are when I meet an educator or healthcare worker conversant in neurodiversity and the social model of disability and respectful of identity-first language.

Treating my identity not as a disorder, but as a difference, one that matters in helping me and understanding me, is powerful compassion that makes for access intimacy.

Selected quotes:

There are many ways to describe intimacy. For example, there’s physical intimacy, emotional intimacy, intellectual, political, familial or sexual intimacy. But, as a physically disabled woman, there is another kind of intimacy I have been struggling to name and describe, what I have been calling “access intimacy.”

I have begun using the term loosely and am still realizing different aspects of it. This is in no way a complete describing of it, instead, this is an initial naming and the beginnings of giving it shape. I am offering it as something that has been useful for me and I hope is useful to others to describe all different kinds of access, not just in relation to disability. I think Access, as a framework, is powerful for so many of our lives. Here, I am speaking from my own lived experience as a physically disabled person but I know access intimacy can also happen in many different ways for mamas and parents, women of color, queer and trans folks, etc… Anyone can experience access intimacy.

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

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.

Forced intimacy is the opposite of access intimacy. It feels exploitative, exhausting and at times violating. Because I am physically disabled and use a manual wheelchair, I often experience forced intimacy when able bodied people push my wheelchair without my consent or when I am in situations where I have to be pushed by people I do not feel safe with, know or who are actively harassing me while pushing me. This often happens when I am traveling and have to rely on strangers for my access needs. I cannot count the number of times a strange man has pushed my wheelchair in the airport, while saying offensive and gross comments to me. These are the moments where disability, race, gender, immigration, class, age and sexuality collide together at once, indistinguishable from one another.

The contradiction of having to survive in the oppressive world you are trying to change is always complicated and dehumanizing.

Source: Forced Intimacy: An Ableist Norm | Leaving Evidence

Disparities in Discipline at Your School

Samuel Sinyangwe has a Twitter thread on how to use the US Dept. of Education data on racial disparities to research discrimination against marginalized groups at your school.

Search for your district on this page, and then follow the link to its discipline report.

Here’s my school district, Dripping Springs ISD, and its discipline report.

 

Discipline Report
Screenshot of the first page of the discipline report for DSISD showing pie charts for enrollment, in-school suspensions, out-of-school suspensions, and expulsions broken down by race/ethnicity.

Black students are 0.7% of enrollment and account for 2.1% of in-school suspensions, 7.1% of out-of-school suspensions, 0% of expulsions, and 2.7% of referrals to law enforcement.

Hispanic students are 20.1% of enrollment and account for 28.1% of in-school suspensions, 21.4% of out-of-school suspensions, 50% of expulsions, and 34.2% of referrals to law enforcement.

IDEA students are 9.7% of enrollment and account for 36.5% of in-school suspensions, 42.9% of out-of-school suspensions, 50% of expulsions, and 31.5% of referrals to law enforcement.

Those IDEA rates are depressingly typical. Schools over-discipline disabled children. There is a discipline gap that’s both racist and ableist. Between compliance culture, deficit ideology, and classrooms hostile to neurodiversity, neurodivergent and disabled students face systems designed for burnout and exclusion.

Neurodiversity in the SpEd Classroom

Walk into many SpEd classrooms, and you’ll see the apparent ignorance of neurodiversity and the social model of disability. Students with conflicting sensory needs and accommodations are squished together with no access to cave, campfire, or watering hole zones. This sensory environment feeds the overwhelm -> meltdown -> burnout cycle. Feedback loops cascade. Mind blind neurotypical adults call across the room, feeding the overwhelm. They ratchet compliance, feeding the overwhelm. They treat meltdowns as attention-seeking “fits”, feeding the overwhelm. They not only fail to presume competence, they speak about kids as if they aren’t even there, feeding the overwhelm. The familiar yet wrong things are done.

The most important thing to understand about autism in shared space is sensory overwhelm. Education, in my experience as student and parent, doesn’t, not in any practical, first-person way. ABA and behaviorism pointedly don’t understand. We navigate systems stacked against us to get access to what amounts to dog training—that dog trainers know better than to use—and a segregated “special” track through our systems that pathologically pathologizes difference and fails to connect with the communities it helps marginalize.

The specialists that serve this “special” track aren’t so much specialized in the lives and needs of neurodivergent and disabled people as they are specialized in compliance and the deficit and medical models. So heartbreakingly many can’t even bring themselves to use our language or educate parents about our existence. Once students age out of our care, we erase them again as adults.

More children than ever before are being diagnosed with autism. But what about the adults? Some of these individuals have never been diagnosed but have always known they were a bit “different.” Others were diagnosed but did not have the same degree of societal acceptance or the same number of resources available to help them cope with a neurotypical world.

Now this group of adults is the demographic that best understands what people with autism need, whether or not they know how to articulate it in a way the rest of society is able to grasp. But what these men and women have to say about autism is important. These people need to be heard!

The video below encourages adults with autism to get involved in the discussion and asks others to be cognizant of the needs of people with autism and invite them into the conversation. The neurotypical community needs adults with autism to lend their voices and experiences to help make the future brighter for the next generation!

Check out this powerful video!

Source: This Video Demonstrates What It’s Like to Be an Autistic Adult Who Isn’t Being Heard | The Autism Site Blog

After sensory overwhelm, the next most important thing to understand about autism in the classroom is autistic burnout. Autistic burnout is unknown in the deficit and medical models. To hear about, you have to go to #ActuallyAutistic people. We live this.

If you saw someone going through Autistic Burnout would you be able to recognise it? Would you even know what it means? Would you know what it meant for yourself if you are an Autistic person? The sad truth is that so many Autistic people, children and adults, go through this with zero comprehension of what is happening to them and with zero support from their friends and families.

If you’re a parent reading this, I can confidently say that I bet that no Professional, from diagnosis, through any support services you’re lucky enough to have been given, will have mentioned Autistic Burnout or explained what it is. If you’re an Autistic person, nobody will have told you about it either, unless you’ve engaged with the Autistic community.

Autistic Burnout is an integral part of the life of an Autistic person that affects us pretty much from the moment we’re born to the day we die, yet nobody, apart from Autistic people really seem to know about it…

Source: An Autistic Burnout – The Autistic Advocate

Do as these researchers are finally doing. They are in the space connecting with autistic people. They are using and spreading our language. We see them and welcome others, particularly K-12.

Scientists are increasingly recognizing a moral imperative to collaborate with the communities they study, and the practical benefits that result. Autism researchers are joining this movement, partnering with people on the spectrum and their families to better address their priorities.

Source: Autism research needs a dose of social science | Spectrum | Autism Research News

Events like The International Society for Autism Research (INSAR) annual meeting are waking to the harm that has been done. They are finally including autistic people and autistic perspective.

So many of us in this system want to do better. Students and teachers find themselves in spaces guaranteed to result in feedback loops and meltdowns and the eventual burnout of everyone involved.  Responding to fires and stresses caused by overloaded sensory spaces and deficit ideology consumes more time, people, and passion than available and starves a better future of oxygen.

A better future requires time to get structural, get social, connect with communities, and build classroom user experiences compatible with neurodiversity and disability. SpEd and self-advocates should be working together,  designing for real life and fixing injustice, not kids.  A better future requires a justice mindset.

To that end, here is some autistic perspective on sensory overwhelm, meltdowns, burnout, compliance, behaviorism, and “special needs”.

Sensory overwhelm is a marquee feature of my life. Autistic perception can be a high fidelity flood in an intense world. “Autistic perception is the direct perception of the forming of experience. This has effects: activities which require parsing (crossing the street, finding the path in the forest) can be much more difficult. But there is no question that autistic perception experiences richness in a way the more neurotypically inclined perception rarely does.

Prolonged sensory overwhelm can lead to meltdown. A meltdown is not a tantrum. It is not attention-seeking. It is a response to overwhelm, anxiety, and stress. If I meltdown, the best thing you can do is be present, patient, calm, quiet, and compassionate. Meltdowns are tidal waves of sensory overwhelm. Try not to add to the overwhelm. “But I’m tortured because whilst I don’t want to make a scene or have strangers adding to the overload and overwhelm, I’m simultaneously desperate for someone to give me a massive, firm, bear-hug. To hide me, cocoon me, and shield me from the shock waves that travel from their universe into mine.

Overwhelm, meltdowns, and the stress of trying to fit into neurotypical society lead to autistic burnout. “Burnout can happen to anyone at any age, because of the expectation to look neurotypical, to not stim, to be as non-autistic as possible. Being something that neurologically you are not is exhausting.

Noncompliance is a social skill“. “Prioritize teaching noncompliance and autonomy to your kids. Prioritize agency.” “Many behavior therapies are compliance-based. Compliance is not a survival skill. It makes us vulnerable.” “It’s of crucial importance that behavior based compliance training not be central to the way we parent, teach, or offer therapy to autistic children. Because of the way it leaves them vulnerable to harm, not only as children, but for the rest of their lives.” Disabled kids “are driven to comply, and comply, and comply. It strips them of agency. It puts them at risk for abuse.” “The most important thing a developmentally disabled child needs to learn is how to say “no.” If they only learn one thing, let it be that.” “Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up.”  ‘What I am against are therapies to make us stop flapping our hands or spinning in circles. I am against forbidding children to use sign language or AAC devices to communicate when speech is difficult. I am against any therapy designed to make us look “normal” or “indistinguishable from our peers.” My peers are Autistic and I am just fine with looking and sounding like them.‘ “When an autistic teen without a standard means of expressive communication suddenly sits down and refuses to do something he’s done day after day, this is self-advocacy … When an autistic person who has been told both overtly and otherwise that she has no future and no personhood reacts by attempting in any way possible to attack the place in which she’s been imprisoned and the people who keep her there, this is self-advocacy … When people generally said to be incapable of communication find ways of making clear what they do and don’t want through means other than words, this is self-advocacy.” “We don’t believe that conventional communication should be the prerequisite for your loved one having their communication honored.

Source: I’m Autistic. Here’s what I’d like you to know.

The logic of the connection between “special needs” and “special [segregated] places” is very strong – it doesn’t need reinforcement – it needs to be broken.

Further, the “special needs” label sets up the medical “care” model to disability rather than the social inclusion model of disability. It narrows and medicalises society’s response to the person by suggesting that the focus should be on “treating” their “special needs”, rather than on the person’s environment responding to and accommodating the person – including them for the individual that they are.

There is another insidious but serious consequence of being labelled (as having or being) “special needs”. The label carries with it the implication that a person with “special needs” can only have their needs met by “special” help or “specially-trained” people – by “specialists”. That implication is particularly powerful and damaging in our mainstream schooling systems – it is a barrier to mainstream schools, administrators and teachers feeling responsible, empowered or skilled to embrace and practice inclusive education in regular classrooms, and accordingly perpetuates attitudinal resistance to realising the human right to inclusive education under Article 24 of the Convention on the Rights of Persons with Disabilities.

In other words, the language of “special needs” leads to, and serves to excuse, a “can’t do” attitude as the default position of many general educators – it effectively deprives inclusive education of its necessary oxygen – a conducive “can do” classroom culture.

The label of “special needs” is inconsistent with recognition of disability as part of human diversity.  In that social framework, none of us are “special” as we are all equal siblings in the diverse family of humanity.

Source: “He ain’t special, he’s my brother” – Time to ditch the phrase “special needs” – Starting With Julius

An education that is designed to the edges and takes into account the jagged learning profile of all students can help unlock the potential in every child.

Source: From Hostility to Community – Teachers Going Gradeless

Further reading,