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.

Access Intimacy: The Missing Link | Leaving Evidence
An illustration by Ashanti Fortson from the point-of-view of a person using a wheelchair, looking down towards their legs and feet. The person is wearing a navy-blue skirt and shiny black shoes. The illustration includes a frame of branches, leaves, and light blue flowers that weave behind and in front of the person and their wheelchair. The flowers frame a hand-lettered quote near the top of the image, which reads: “When I’m very sick, my community carries me. It’s a beautiful and tender thing to be cared for so intimately.” At the bottom of the illustration, a rectangular yellow plaque made of branches contains the name “Rebel” in capital letters.
An illustration by Ashanti Fortson from the point-of-view of a person using a wheelchair, looking down towards their legs and feet. The person is wearing a navy-blue skirt and shiny black shoes. The illustration includes a frame of branches, leaves, and light blue flowers that weave behind and in front of the person and their wheelchair. The flowers frame a hand-lettered quote near the top of the image, which reads: “When I’m very sick, my community carries me. It’s a beautiful and tender thing to be cared for so intimately.” At the bottom of the illustration, a rectangular yellow plaque made of branches contains the name “Rebel” in capital letters.

Image Credit: Ashanti Fortson, Community As Home – Portraits – Disability Visibility Project

But disabled friends still feel safer to be around. I think they always will. There’s something about knowing what it’s like to have an unpredictable body that often allows you to feel deeper levels of empathy for others with unpredictable or disabled bodies. I know my disabled friends won’t tell me not to let my disability define me just because I’m talking a lot about it. I don’t need to censor myself. I don’t need to hide anything. I don’t need to pretend. I can be me – a creative, funny disabled person who is struggling with health issues while dealing with grief over the things I’ve lost since my injury and fighting ableism in a world that expects me to be something I can no longer be. They like that person. In all her abilities, limitations, and complexity.

What my disabled friends essentially show me is the beauty of being disabled – which for me is most evident in the deep and fierce connections disability fosters.

The Beauty and Care of Disabled Friendships – Disability Visibility Project

Access intimacy is one of the main ways that I have been building interdependence in my life. I have been pushing myself to grow it and not just subsist on the little I have been able to find, most significantly with my partner, as is the case for many disabled folks. Engaging in building any kind of interdependence will always be a risk, for everyone involved; and the risk will always be greater for those who are more oppressed and have less access to privilege. In an ableist world where disabled people are understood as disposable, it can be especially hard to build interdependence with people you need in order to survive, but who don’t need you in order to survive. In an ableist context, interdependence will always get framed as “burden,” and disability will always get framed as “inferior.” To actively work to build something that is thought of as undeniably undesirable and to try and reframe it to others as liberatory, is no small task.

Especially as disabled people, we know what it means to live interdependent lives and it does not always feel revolutionary or enjoyable.

Access Intimacy, Interdependence and Disability Justice | Leaving Evidence

Access intimacy is interdependence in action. It is an acknowledgement that what is most important is not whether or not things are perfectly accessible, or whether or not there is ableism; but rather what the impact of inaccessibility and ableism is on disabled people and our lives. In my experience, when access intimacy is present, the most powerful part is having someone to navigate access and ableism with. It is knowing that someone else is with me in this mess. It is knowing that someone else is willing to be with me in the never-ending and ever-changing daily obstacle course that is navigating an inaccessible world. It is knowing that I will not be alone in the stunning silence, avoidance and denial of ableism by almost every able bodied person I have ever and will ever come in contact with. Access intimacy is knowing that I will not be alone in the stealth, insidious poison that is ableism.

The power of access intimacy is that it reorients our approach from one where disabled people are expected to squeeze into able bodied people’s world, and instead calls upon able bodied people to inhabit our world.

In my life, access intimacy continues to be a game-changer, a way to queer access into a tool we can use to get free. It has been a way to shift and queer how I and others understand disability and ableism. And because of the inherent interdependence of access intimacy—the “we” of access intimacy—it has transformed the kinds of conversations I am able to have with some of the able bodied people in my life. 

Access Intimacy, Interdependence and Disability Justice | Leaving Evidence

And I’m doing
Better, every day
Because of those who stay aware
That we’re as great as we make
And not all differences need to be so
Explained

The Curse, Solillaquists of Sound

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.

The Doctor and Nurse Who “Got It” | Health as a Human Right

Further reading,

Community
Choosing the Margin: Design is Tested at the Edges
Interdependence
Forced Intimacy
Healthcare Access: They don’t take Disability Studies classes. They don’t socialize with us. They don’t listen to us.

Published by Ryan Boren

#ActuallyAutistic retired technologist turned wannabe-sociologist. Equity literate education, respectfully connected parenting, passion-based learning, indie ed-tech, neurodiversity, social model of disability, design for real life, inclusion, open web, open source. he/they