“I guess I’m in between” A conversation with my mother about disability.

by Ylva Söderfeldt

“Disabilities? I don’t have any!” This is my mother making a joke when I asked her if I could interview her for the blog. She’s visiting from Sweden to hang out with her grandkids (and me), something she does often as she’s mostly retired from her work as a neurologist. My mother is a professor of neurology, holds an M.D. and a Ph. D., and still practices medicine sometimes. She has four children and seven grandchildren. Born in 1946, she belongs to the post-war generation and although she was quite busy raising children and building a career, she has also been a life-long activist. She is also hearing impaired since birth and now has a cochlear implant. I’m her youngest child, now a historian, and have focused on Deaf history for most of my career, a topic I got acquainted with through her. I wanted to talk with her about the many ways in which disability figures in our lives.

The thought I had was to have a conversation with you about disability from different perspectives.

Do you mean hearing impairments?

Yes, that would be one thing we could talk about. And there are different dimensions to that too, professional, personal…

Well, I realized at a very early age that I had reduced hearing. But to be honest, although I realized that there are many things I just can’t do, like singing, I never thought that it was a real obstacle. I just didn’t have that perspective. I think many others think like that: “I can’t do this because I’ve got this thing”. But I never thought that. Maybe because I did very well in school. I was better than the hearing kids! So maybe that immunized me from thinking that hearing is superior.

You mean you didn’t see it as a problem?

Yes I did see it as a problem. But I never thought that I couldn’t do the things I wanted. OK, I can’t do everything, I was never going to be a ballet dancer for instance, but those are all things I never wanted to do anyway. What I wanted to do, I could do. But it was harder for me than for others, that’s something I’ve realized now that I didn’t before. I had to work harder than other people.

I think everyone else realized that. I know we talk about it, among the siblings. “How did she do it?”

Yes, I realize now looking back that a lot was tough.

When I was little, you had hearing aids, and it’s a favorite anecdote of mine how I used to think I’d get them too when I got older, just like I’d get other things I associated with an adult woman: hearing aids, nail polish, heels… But you didn’t have hearing aids growing up.

No. And that’s a funny story because many disabled kids think their disabilities are going to go away when they grow up. But for you, it was the other way around. Anyway, I’ll tell you: I grew up in the administrative region that belonged to Örebro, and in the 1950’s, they were the most advanced in Sweden when it came to hearing impairments. They had a deaf school there that was very oral-focused, and the kids there were the ones with the most residual hearing, or who were deafened late. So maybe because of that, they were prominent and very modern in audiology, and there was a training facility. I lived in a small town so I didn’t have regular access to this, but I got sent to a summer school for hearing impaired children. I didn’t feel very at home there, I must say. But it made me aware of that Deaf people existed. Some were more deaf. We definitely didn’t sign or anything but a couple of the kids knew Sign Language. So I learned that it existed.
But I still thought, for a long time, that I was only mildly hearing impaired. But then, quite late, in my twenties, I had to realise that I was actually quite severely hearing impaired. And at the same time, it got worse. The high frequencies almost completely disappeared. When I was almost thirty, I got my first hearing aid. I think I had tried some on as a child but I never wore them before that. They weren’t that good back then. And my hearing was better.
So then I got my hearing aid and I did have some troble coming to terms with that at first. And so I got curious, what are my options if I can’t compensate for this with technology? And that’s how I started getting interested in Sign Language.

This was in the 1980’s, right?


Me and my mother in 1984

 So at that time, you were a doctor, you had been working for a few years. And it was also a time when all kinds of disability movements, not least the Deaf movement, really took off and were quite radical. Was that part of the attraction?

Oh yes absolutely. The way that it happened was, there was this organization for deaf and hearing impaired people who didn’t sign, it was called “Höreselfrämjandet”, which means something like “Pro-Hearing”. And I thought that was so stupid! So I wrote something about it, for their paper. And then lots of people contacted me, younger people, my age and younger, who liked what I’d written. And then I suddenly had a new network. I started to connect more with deaf people, went to Sign Language classes, and joined the Deaf club where we lived. And you know I was part of this little group that made the paper. [In the late eighties and early nineties, she was one of the people behind a fanzine-type publication for hearing impaired people with a left-wing profile].
But I never got very good at Sign Language. And I don’t know why.

You can’t have been that bad. I remember you had interpreters.

Yes but that was more Signed Swedish. And I understand better than I sign. I think it was just too much, in my life at that point. I couldn’t go all-in.

Yes, you had lots of children at home in the 1980s. 

Yes I did! But I also chose not to go all-in, because I knew, this is a special world, and I don’t want to live in the Deaf world full-time. I didn’t want to make that transition.

Did you think of that as a choice you made?

Yes, that was a choice. Some people I knew, who had a similar background, they chose to go the other way. I’m not really in touch with them any more.

What I’ve thought about is that the disability rights movement, including the Deaf, they were in opposition to the medical model, and one of the main confrontations was with the medical sphere. 

Yes, and that was another thing, when the cochlear implants came, I reacted against that. So that was one of the issues that also brought me there, that I didn’t agree with the ideology behind that, and I still don’t. Even though I have an implant now.

But at the same time, I think if I’d ask you, as what do you identify? My guess is that your first answer would be “as a physician”. You have a very strong identification with your profession. 

Yes I do! My identity as a physician is very strong. But I had an education in behavioral science as well. And that helped me at the same time to have a more critical view of medicine.

Were there any conflicts though, with people you met in the Deaf movement, and your identification with medicine?

No. I think the opposite. People liked it, that there was a doctor who were on their side. And I also met some people with the same situation, in the United States, who were physicians and Deaf. And that was important to me. They were even more deaf than me, biologically and socially. So I never felt that was a conflict.

How about the way the experience in the disability sphere influenced you professionally? I mean obviously it did, you did a Ph.D. about neuroimaging of Sign Language.

The research I did, that was mostly because I wanted to finish what I’d started before going to medical school, when I studied psychology. Doing a Ph. D. in psychology, which happened to be about Sign Language, was a way to finish that. And the best thing that came out of that was that I got into working with neuro-functional methods, and I’ve kept doing that.. But in the clinic, I never wanted to work with deafness. There are people, you know, paraplegic doctors who work with spinal injuries. I never felt attracted to doing that, working in the rehabilitation or anything. But think I do have a more nuanced view than some colleagues, on what it means to live with a disability. And I had to work harder.
But I don’t want to complain. You should see this facebook group I’m in, for hearing impaired people, they complain a lot! [She starts telling an anecdote about what gets posted there.]

I’ve heard you joke about hearing and deafness a lot over the years. Maybe we shouldn’t do that in a public forum! 

Well but you know within any group it’s ok to joke about ourselves, isn’t it? But in terms of groups, I don’t know which one I belong to. I guess I’m in between. That has it’s own charm!

Recommended Citation: 
Ylva Söderfeldt (2017): “I guess I’m in between” A conversation with my mother about disability. In: Public Disability History 2 (2017) 9.


Futures of able-bodiedness: The dance performance THIS THING I AM

By Martin Nachbar, choreographer
Translated by Ylva Söderfeldt

On December 7, 2016 my team (consisting of dancers Lisa Densem, Sunniva Vikor Egenes, and Benni Pohlig, the lighting designer Bruno Pocheron, costume designer Marion Montel, and the producer Susanne Beyer) and I celebrated the premiere of a dance performance that approaches the subject matter ‘cyborgs’. “This thing I am” is my latest production and will be performed again in a modified version on June 17 and 18 in the Sophiensaelen in Berlin. Because our budget didn’t allow us to actually work on the interface between bodies and technology, I instead focused on two aspects that are technological and fantastic even though they don’t involve proper cyborg technology:

First, we worked with the fact that we as humans have always used different techniques in order to be in the world and survive day by day. Through practice and repetition, numerous of these so-called body techniques are stored within our bodies, allowing us to relate to our environments. One of the most ancient, most pervasive, and therefore perhaps least conscious body techniques is walking. Most of us learn it as infants, through imitation and months of trial-and-error. Walking is a useful example not least because it readily refers to the wide range of possibilities of modifying a body techniques by external means: shoes, crutches, prostheses, wheelchairs – extensions like these also extend the concept and perception of walking as a body technique.

This leads to the second aspect of our work with “This Thing I am”. One of the core features of dance is that it experiments with human body techniques and in doing so enhances and extends the awareness of the body and its surroundings. To a great extent, these processes have an open end. They do not strive towards greater efficiency in order to get ahead in the evolutionary struggle for survival, but explore the leeway offered in action and perception. 

Photo: Dieter Hartwig
This, in turn, means that the imaginary always matters in dance. How does our perception open itself up to a still unknown future? This is the question that our contemporary technologies pose to us, to our changing bodies and our existence in a changing world. This is science fiction, not as u- or dys-topia, but as a sensitive and open play with what is yet to come.

Based on these considerations, we focused on three methods when rehearsing the piece: First, the work with the connective tissue within the bodies of the three dancers. This tissue type has gained increasing attention through the recent popularity of therapeutic and diagnostic methods such as osteopathy and certain types of manual therapy. The connective tissue rests underneath the skin, envelopes muscular fibres, in shape of tendons connect bone with muscle, keeps organs in their places, and thus forms a network throughout the entire body. If we were to extract everything but the connective tissue, we would still be able to recognize the shape of our body, inside and out. Furthermore, the fascia tissue harbors most of our proprioceptors, the sensory receptors that detect the position of our body parts in relation to each other and our position in space. These receptors are found adjoining most acupuncture spots of Eastern medicine, and they react positively to the insertion and slight twist of the needle by which the tissue is minimally wrought. The fascia also reacts to manual touch. During rehearsals, two of the dancers often attempted to put the third dancer’s fascia into motion as a way to make them aware of it.

Photo: Dieter Hartwig
In an increasingly dynamic process, this turned into trio improvisations, and finally choreographies that evoke the feeling and image of three bodies connected in an invisible network. In rehearsals, the dancers spoke of future surgical procedures without cuts and scars, and of the sense of an inner and outer network connecting what’s inside the body with what’s surrounding it. We did not necessarily invent new movements or body techniques. Rather, and that was most important to me, we sharpened the way in which we perceive bodies and the way that they already are connected without technological enhancement. This is the foundation of almost all movement in the piece.

The second method was fictional storytelling. I asked the dancers to imagine an event in their lives that made them into cyborgs. Each of their stories refers to physical alterations that make the contemporary body an extraordinary body in a different time. The result was versions of science fiction that reflected the individual knowledge, wishes, hopes and fears of each dancer. The mental figure was the word “once”, which directs us both into the past and the future. Benjamin Pohlig, for example, relates how he hacked the memory hard- and software of big insurance companies in order to regain control over his own recollection, but then kept getting further and further lost in the Memory Cloud. 

Photo: Dieter Hartwig
Sunniva Vikor Egenes tells us about how she lost her job as a musical performer after cyborgs literally stole the show with their enhanced features. She then goes on to learn new body techniques, which unexpectedly give her a wonderful singing voice.

Photo: Dieter Hartwig
And, finally, Lisa Densem fantasizes about having her consciousness overwhelmed by the injection of a micro-machine that operates on neuronal levels and infiltrates the chemistry of the brain. The micro-machines allow for new connections in the brain and for enhanced abilities to verbalize experience. The process leaves her in a state of constant immersion in the experience, full of complexity and detail but without a sense of time or a way to verbalize it. In the end, she says, “There are things I cannot communicate. There are things I know which you would not be able to think. I have seen things. Sometimes I try to ignore this knowledge. I like to play myself as I used to be, but then I am overcome by guilt and a sense of responsibility. That is why we are here.”

Photo: Dieter Hartwig
This kind of limbo is not the purpose of current efforts within cyborg- and AI-technology. Quite contrary, the involved companies and military organizations want to gain as much financial and strategic advantages as possible for the neoliberal and martial struggle for survival. This is their prerogative. But let’s remind ourselves what dance can make us aware of, and what the cultural theorist Karin Harrasser has repeatedly pointed out: body experiments are always open-ended, since we can never predict with any certainty what technological body enhancement will make possible, and what a body will do with its enhancements.

That we humans, and now I return to the issue of walking, use our hands the way we do results according to some anthropologists from the fact that the bipedal walk freed the hands for other tasks. Evolutionary biologists also see a connection between speech and upright walking, as gravity pulled the larynx down in our throat, making room for the complex oral anatomy needed for speaking. Had the early hominids been confronted with the vast possibilities of their voices and hands, they would probably not have dared to make those first steps.

This leads me to the final method from the rehearsal process. In mime corporel, which is a physical acting technique and not intended for dance, the so-called “point fixe” is an important component. It consists of fixating a hand in space as if it were holding on to a pole or supported by a wall, and then letting the body move around this fixed point, without moving the hand. In mime corporel this serves to create the illusion of an object. 

Photo: Dieter Hartwig
We also worked with “point fixe”, but not to create imaginary objects, but in order to explore and question how hands are connected to bodies. There is already discussion around whether children should still learn to write by hand, when they in the future will surely be writing on keyboards, if at all. So, what will hands be good for in the future? Maybe they will remain only as relics of an earlier design, only to facilitate the transfer from the manual to the next era, when we’ll use them only for gesture and, as the Deaf already do, for language.

What this is going to be like we can only surmise. I imagine it will be exciting to program an app using gesture, and to also use the app by this means. Instead of crouching over the smartphones in our hands, using our thumbs to navigate, we’d see the data with inner eyes, and operate it with gesture. We will see wild and connected choreographies in the streets, every step, each gesture could be directed towards an app, or a passer-by. Every pedestrian would become a dancer and thus a kind of researcher that experiments with the possibilities of their body within an open network with other experimenting bodies.

Photo: Dieter Hartwig
See the entire performance here: https://vimeo.com/198805877
Martin Nachbar is a choreographer based in Berlin.

Recommended Citation:
Martin Nachbar (2017): Futures of able-bodiedness: The dance performance THIS THING I AM. In: Public Disability History 2 (2017) 8.