The Lack of Access Intimacy

Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs.

The quote above is from an essay about access intimacy by Mia Mingus that I recently read, and it blew my mind. Not only was it wonderful because it pinpointed an experience that I’ve been lacking a term for on a personal level, but also because I believe that shedding light on experiences that disabled people have is necessary for political reasons. For me personally, naming my experiences is about emotional survival.

As a disabled, chronically ill person I’m often struck by the thought that healthy people without disabilities really don’t get what my life is like. Not only in the sense that they don’t experience what I experience, but also that they can’t even imagine that life can be like this, not even at a theoretical level. People outside of the disability community seem to think that understanding somebody’s access needs is easy, when in fact, having my access needs truly understood is something rare. 

When I try to explain that my contact at the social insurance agency demands talking on the phone, even though my ability to exchange information verbally is impaired as a part of my disabilities, people don’t believe me or think that it’s a deviant exception from standard procedures. But it isn’t. For me, the standard procedure is that people who are supposed to help me gain access to places, activities or something else that I need, fail to understand my access needs. They fail to see my need for written communication as an access need. They fail to see my need for lying down as an access need, no matter how much I explain the underlying causes. My standard procedure is that I write a letter explaining my access needs, just to be called to a meeting where I have to sit up in a car to get there, then sit up straight during the meeting (“we don’t have couches or bunks here, sorry”), verbally explain my situation and receive information by listening. This happens strikingly often with healthcare staff, who are supposed to understand my diseases, conditions and disabilities.

Every time this happens with someone who is supposed to help me gain access to something, I feel awful. When I have tried so hard to communicate my needs and they don’t get it, even though it’s their profession and they claim to be experts, I end up in something that I think could be described as a cognitive void. The situation doesn’t make sense at all, there’s something I fail to grasp. Thanks to the term “access intimacy” I think I’m starting to parse the situation better.

What I just described is not only a lack of access intimacy, but its opposite. It is like opening up to a therapist about an emotional issue and having the therapist reply like they have never heard of this feeling and having them treat it like it doesn’t really exist. Like if I elaborated carefully on my overwhelming feelings of grief, went in to all those hidden places and brought all sides of my grief into the light, just to have the therapist pretend like they never heard about it. “Grief? Oh I’ve never heard of that. Moving on, what can I do for you?” That would not create emotional intimacy, but would likely lead to distrust and distance. What happens in situations where medical staff, social workers and other people who are supposed to help me gain access fail to see my access needs as actual access needs, is similar. It creates a huge distance, without the distance being acknowledged. Usually, nobody is acknowledging that understanding someone’s access needs on a deeper level is a form of intimacy.

Just to be clear, Mingus doesn’t write about access intimacy as something that occurs in a specific kind of relationship, but my example above is a pattern that occurs in an asymmetrical relationship. I chose this example because it’s a recurring problem in my life, where I think that the concept of access intimacy can help me cope with the the feelings of anger, frustration and shame following these incidents, and the pattern they create. Because access is very often talked about as something clinical, purely logistics and detached from intimacy. It obfuscates the dimensions that are very present for me living with my disabilities day and night, every day. Actually getting my access needs means understanding, at least partially, how they affect me. In order for professionals to do that, I usually have to let them in to a spehere that is somehow private. It means making myself vulnerable and that’s exactly where the intimacy knocks on my door. No matter how much I try to keep healthcare staff or other professionals at distance, a sort of intimacy is probably necessary.

The problem is when nobody is acknowledging this need for intimacy, when people expect me to open up and make myself vulnerable, just to smash my words, my experiences and my life into pieces. Talking about access in terms of intimacy can be productive because it highlights the emotional dimensions of access. It means that everybody involved needs to take emotional responsibility. As Mingus writes:

So many relationships where I knew I could only ask for or share so much, without getting snapped at, chided or being punished with reluctant passive aggressive access.  So many times where I was too afraid, because of the lack of access intimacy, to speak up and voice what I needed or what I couldn’t do, resulting in being isolated or getting very badly physically hurt from pushing myself too hard, in some of the worst cases.

Just the fact that someone else shares the experiences of access intimacy and its opposite, that unfortunately seems to be more common among the disabled people I know, and have found it important enough to name and discuss in an essay makes me hopeful and happy. It gives me the kind of peace of mind that only happens when my disability experiences are acknowledged and understood.