“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.

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