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

Social Support, Well-being, and Quality of Life Among Autistic People

Great piece from the American Academy of Pediatrics on how inclusion, acceptance, agency, self-advocacy, and responsive parenting/teaching support adaptive functioning, language acquisition, subjective well-being, and transition to adulthood. The findings align nicely with social model self-advocacy.

Selected passages:

I challenge the validity and utility of functioning labels for autism and the interpretation of the “autism spectrum” as a linear continuum. Social support may mediate functioning, because individuals with initially lower skills may experience more benefits from enriched social environments, such as parental input for language growth and cognitive development from inclusive educational settings. Furthermore, subtler manifestations of autism increase individuals’ risk of active peer rejection, loss of formal supports as they transition into adulthood, and distress. Thus, in this review, I provide support for the notion of autism as a cloudy constellation of uneven skills and high within-person variability, with performance contingent on the quality of social experiences and support well-suited for individual abilities or potential and needs.

Self-advocates have organized the neurodiversity movement to reclaim autism as a part of identity (eg, using identity-first language such as “autistic person,” as in the case of the author, rather than person-first language such as “person with autism”) and support civil rights. We argue that social environments contribute substantially to disability and seek quality of life, defined in terms of “objective” factors of adaptive functioning, such as independent living and employment, as well as in terms of subjective well-being, which requires self-determination to play as active a role as possible in making decisions to have the experiences one wants. Yet we argue against normalization and “cure,” in part because many autistic traits can function in neutral or positive ways, although other people may misunderstand or stigmatize atypical behaviors. Indeed, the following narrative review developed from empirical evidence replicated by independent research teams argues against a linear relationship between autism symptoms and impaired functioning, across developmental periods and in multiple domains of both “objective” quality of life and in subjective well-being. In the following syntheses, I suggest that effective social support and subjective well-being mediate whether autistic people achieve a high quality of life.

Responsive parenting (eg, parenting that follows children’s focus of attention and labels objects of interest while allowing the child to take the lead) contributes to young autistic children’s language development, particularly among those who need it most: those with lower levels of expression. Although the same principle applies in typical development, responsive caregiving and input may especially benefit language learning for autistic children, particularly for those who have more difficulty responding to others’ attention. Parents’ strategies to synchronize their behavior in response to their autistic child’s, such as matching his or her pace, may drive language gains from joint parent-child engagement through encouraging the child to initiate interactions, which may especially benefit the children who have the most difficulty producing their own goal-directed actions in reaction to others’ movements. This aligns well with the advice of autism rights movement founder Sinclair, in a foundational essay primarily for parents, to “let your child teach you a little of her language, guide you a little way into his world” as a means of helping the child adapt to the dominant culture and for the well-being of the family.

Instead, higher autism severity, as assessed by the parents’ questionnaire-based report, sometimes inversely relates to their acceptance of their child’s autism, which suggests that subjective perception rather than empirically demonstrated factors may drive acceptance. An increase in autism symptoms over time also relates to more parental acceptance of a child’s autism, likely because of a lowered perception of the possibility for the child to outgrow his or her challenges.

Early intervention delivered in inclusive as opposed to segregated preschool settings predicts higher IQ in elementary school, particularly for those with initially greater social and adaptive behavior impairments. In addition, higher levels of educational inclusion relate to better functioning for autistic adolescents and adults, beyond the effects of demographic and individual characteristics. Furthermore, autistic adolescents with intellectual disability had better academic performance in inclusive versus segregated classrooms, likely in significant part because they received more structured instruction time and their educational plan had greater focus on applied skill development (as contrasted with rote procedural goals). These benefits of inclusion appear driven in part by higher expectations based in confident understanding of needs, more naturalistic and responsive teaching methods as opposed to behavioral management, and access to typically developing peers.

An autism-typical pattern of poor adaptive functioning relative to IQ tends to rise with greater age and IQ, and autistic young adults as a group tend to have lower employment rates than their peers with intellectual disabilities.

Source: Social Support, Well-being, and Quality of Life Among Individuals on the Autism Spectrum | SUPPLEMENT ARTICLES | Pediatrics

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.