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.

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Switching Roles of Pain

My partner hurt his foot the other day. It’s probably not serious but at the moment he is in pain and has to use crutches to walk. To my own surprise this is evoking quite a lot of emotions, and several times a day I find myself thinking about practical solutions in an attempt to get rid of these feelings. When I tell myself “stop it – deal with your feelings” I reach a point where I start reflecting on my experience of vulnerability. It’s hard, but also a big relief.

Seeing my partner in pain gives me an urge to do anything that can eliminate his pain, because I don’t want him to suffer. Unfortunately I can’t do very much about it and I know that in this situation the best thing I can do is to accept that, and not let my incapacity cause me frustration that then becomes an extra burden to my partner. This experience is a switch in roles, because usually he’s the one who has to deal with the experience of not being able to make my pain go away, as I’m the one living with chronic pain. The situation is difficult, but it does give us both a better understanding of the other’s challenges. Because no matter how much we talk about this stuff, we are two different people with two quite different ways of perceiving the world and there are nuances, feeling, thoughts and sensations that aren’t being captured in our words. Not yet, at least.

This situation highlights power dynamics that usually are more obscure. The position I’m in right now when my partner’s new limitations make him more depending on me puts me in a position of power. It exists simultaneously with me having to deal with my incapacity to make his pain go away and with my dependency on his help in my everyday life. I have to deal with being in a position of power and feeling frustrated because of my sense of powerlessness at the same time. I do this everyday (that’s what being a parent is about) but it’s new in relation to my partner.

Reflecting on the changed power dynamics has brought me to face the experience of vulnerability, and that was what this post was originally planned to discuss. As it turns out I had a need to sort out some line of thoughts first, but I’m planning on writing about my thoughts about vulnerability in my next post.

 

Doctors have power, no matter if you admit it or not

I spend most of my time trying to understand power and I have been doing that since I was a teenager. All of my university studies were about power, all of my time in different NGOs and networks has been about discerning and changing power dynamics. Trying to understand power dynamics has been a big part of trying to understand an extremely confusing world.

I understand perfectly well that everybody else isn’t this interested in trying to understand power dynamics. That’s fine, people have different interests. However, I have a hard time dealing with situations were people are in positions with a great deal of power without paying attention to it. I know that it’s very common not to see the power we have, but I can’t shake it off when people like doctors are blatantly careless and uninterested in the power dynamics that goes on in a patient-doctor relationship. When it’s being treated as something unimportant.

Doctors have formal power to make decisions about treatments and that seems to be hard enough to talk about. Trying to talk about all other kinds of power dimensions, like being considered experts, having the right to define the truth, having control over what should be labelled ill and even controlling what information that is considered relevant and worth discussing – that seems to be simply impossible in many cases.

How is it possible that people who posses positions like doctors can get away with refusing to put their own part of the power dynamics under scrutiny?

Refusing to talk about power dynamics can be an efficient strategy for keeping your own position unquestioned, consciously or not. I know that. A part of me just can’t grasp that so many doctors can get away with doing it.

Surviving World Autism Awareness Day as an autistic person in the closet

So tomorrow it’s going to be World Autism Awareness Day and I feel worse than I expected. I’ve tried to write and discuss a bit but the fact is that a lot of openly autistic people in my country are supporting this day and claim that we shouldn’t let Autism Speaks ruin it. Some voices are claiming that spreading knowledge is great and I agree with that. However, I don’t see how this day contributes to disseminate knowledge about autism when the strongest voices are spreading prejudices.

I’m not openly autistic. I’m openly neurodivergent but I can’t be clear about being autistic, since it most likely will hurt my child (I know autistic parents who have been very questioned by schools and authorities as parents, sometimes actually having their kids taken away because social workers assume they are bad parents when their autistic kids suffer from unaccessible, abusive schools). I’m also always promoting that the voices of autistic people should be considered more important than the voices of family members and professionals. This means that in order to live up to my own standards I have to listen to the autistic people who claim that this is a good campaign. No matter how much false information it’s spreading, no matter how much it will silence a lot of other autistic people, and no matter how much harm it will do. Officially I’m not autistic and have to stand back and listen to all the horrible things that will be said.

I knew it was going to be hard but I didn’t expect to feel so desperate.

Sticking to my solidarity principles

I read Liberation of one group can’t happen through oppression from Un-Boxed Brain and I agree. I’m fighting with internalised ableism. I’m learning to express myself differently, both when I’m thinking about myself and about other people. I’m white, meaning I have a huge responsibility to listen to people who are oppressed for reasons I’m not. To actively learn how to not reproduce oppression.

The other day, when I wrote about the very uncomfortable interaction I had with a person, it turned out that this person doesn’t agree. This person has started an organization for a specific group of people, and in this group a lot of people probably have disabilities. It’s not the main cause of the organization, though. However, the person said some ableist stuff but it was the kind of thing where the ableism isn’t obvious. It also turned out that this person is completely unaware of racism. When pointing it out, I got accused of seeking a conflict that didn’t exist. The sentence ended with a happy smiley.

I get uncomfortable when people act like this. Especially the smiley in the end, making it a joke however serious it was intended. When I come across people who act like this I usually start doubting myself and my inability to read people and most of the times I end up feeling like the lousiest person in the world. This time however, I actually replied that this kind of communication is unacceptable to me, it steals too much energy. I asked the person to therefore not contact me again.

Now, I’m scared but also kind of proud. For sticking to my standards without starting to hate myself. Because liberation of one group can’t happen through oppression of another group.