Access Intimacy 101: Why do Some People Just ‘Get It’? (Aka: Blind Dance Mom Part 2)

My daughter, dressed as Harley Quinn, comes skipping out on stage twirling her pigtail, and settles into a pose with one hand on her hip and the other raised. She grins, leaning forward, bringing one leg up. She does an arial and then twirls her way back to the center of the stage.

For those who read my last post, you know that I am privy to all of these details, thanks to Audio Describer Chanelle Carson. But what you may not know is that audio description is just one piece of access.

Many have referred to vision loss as a “social disability”, which brings up some complex feelings for me, as connection is one of my top values. There are settings in which I feel deeply connected to other human beings, and there are also certain settings that feel especially disconnective to me as a person who is visually impaired.

To unpack this further, I’ll need to reference an article written by reporter, Will Butler, as he chronicled his experiences at SXSW back in 2013.

“There are some places that blind folks just aren’t expected to be…particularly large crowds, hectic circumstances and places of general fun and enjoyment. You can feel people gawking, questioning your legitimacy and fearing your misfortune.”

When I first read Butler’s words 10 years ago, they struck a chord and have floated back into my consciousness from time to time, especially while at large events. They’ve also given me language to express why I don’t typically feel comfortable walking around with my white cane at dance competitions. I don’t bring my guide dog, Roja, due to the loud music, and I tend to link arms with my husband and then plant myself in an auditorium seat for most of the competition. Seems simple and easy, right? Not exactly. For years, I have walked away from long weekends of dance competitions feeling isolated, especially when my daughters were younger and needed “dance mom” support that I wasn’t able to give them.

I have often found myself envying the other moms, particularly the ones who bounce quickly out of their seats the minute their dancer’s song is over, rushing backstage to congratulate their dancer or to hug them when a performance hasn’t gone well. They rush with their makeup and hair bags, ready to magically accessorize and prep their dancers for the next act, and they do it all at a speed I can’t comprehend.

Meanwhile, I sit in my seat and try to muster the courage to make my way through a crowded auditorium into crowded hallways in search of a crowded bathroom, as I’ve been “holding it” for the past 10 songs, afraid I’ll miss my daughter’s routine since the estimated time for navigating to and from the ladies’ room is unpredictable. Inevitably, my stomach rumbles with the gnawing feeling of shame and mom guilt over spending so much time trying to take care of my basic needs while my daughter’s team members all seem to have moms that are flitting around at lightning speed doing helpful dance mom things backstage.

I have been backstage once in my 7 years as a dance mom, when my younger daughter, Elli, was in 2nd grade and about to take the stage for her duet. A well-meaning mom led me through the dark passageway and sat me on a stool and then disappeared into the dark void. I had no idea where Elli even was, and the music was so loud that I couldn’t use my sense of hearing to fill in the details. There was only one thing I knew for sure: I was sitting backstage like a piece of furniture while the other moms interacted and connected with their daughters and each other. I longed for just one person with whom to share Access Intimacy, but this was not even a term in my vocabulary at the time. That was just 5 years ago, and I now have multiple definitions to describe the concept.

I’ll begin with the fancy academic definition and then break it down.

“Access Intimacy refers to a mode of relation between disabled people or between disabled and non-disabled people that can be born of concerted cultivation or instantly intimated and centrally concerns the feeling of someone genuinely understanding and anticipating another’s access needs” (Desiree Valentine)

Simply put, Access Intimacy is when someone is WITH a disabled person in accessing needs as opposed to separating themselves into the role of “heroic helper”. 

Jenelle and I dove into the origins of this term in previous posts, but wanted to share this additional definition as it implies that Access Intimacy can be both natural and cultivated. 

I consider people with whom I share Access Inimacy people who “get me” and my vision needs without necessarily having to ask specifics. This is vulnerable and blunt for me to say, but when someone tells me they need to know exactly what my vision is like in order to help me, I automatically feel distanced from that person.

I am a curious person by nature, so I understand natural curiosity, but I can also feel when it’s laced with something else. Discomfort, maybe? Judgment? I’m not exactly sure what it is, but let’s just say it’s very obvious when my lack of vision is the only thing on someone’s mind.

When embarking on a hike with a group of friends a few years ago, for example, one friend asked, “Joy, how do you want to be treated on this hike?” Yes, she had curiosity, but the way she phrased it left me feeling confused and speechless. Fortunately, another friend with whom I have Access Intimacy quickly replied with humor. “Yeah, do you want us to throw rocks at you as you hike?”

For those I am closest with and share Access Intimacy, my visual impairment is a secondary characteristic and not something they seem to be thinking of while we’re spending time together, though they’re aware of my needs as they arise.

Fortunately, I have experienced Access Intimacy with both strangers and friends many times over the years, and certain instances have helped me further define the term.

One of these instances occurred at Lucy’s national dance competition last year.

I had been at dinner with some parents and shared about my blindness with the partner of one of the dance moms on Lucy’s team. Since she herself had disclosed a hidden disability and also has racial and sexual orientation identities that fall outside of the “dominant norm”, I immediately felt the empathy of someone who daily navigates challenges on multiple levels.

Yet I was still surprised and delighted when she turned to me after one of the dances and asked if I’d like her to accompany me to Lucy’s dressing room. To her it might have seemed like a small gesture, but to me, it allowed me to enter a space I rarely get to go. I was able to hug Lucy, congratulate her and even bring her water. It was small, but it mattered largely. On the way back to the auditorium, she thought to ask if I’d like to make a quick stop by the bathroom and then the snack bar. She helped me in a casual, effortless way, not hovering over me awkwardly or making a production out of guiding me. With laughter and lightness, she managed to transform a stressful arena into a comfortable one. And that, ladies and gents, is Access Intimacy.