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Transcript: Conscious TV – The Challenge of Disability
Alex: Hi, I’m Alex Howard and you’re watching Conscious TV. And today we’re going to be talking about disability, how it affects people’s lives and how it potentially can also be used as an opportunity for transformation. So my two guests in the studio today are Jennie and Rob from Enhance UK, so welcome to the studio, thanks for being here.
Jennie. Hello, thanks for having us.
Alex: Now Jennie, when I first met you actually at the swimming pool, and I was lying there reading a book, well it was called ‘Mother of God,’ from what I remember…
Jennie: It was yes.
Alex: …and you asked me about the book and we had a really interesting conversation about it, and I didn’t realise until right at the end that actually you had degenerative healing loss and you were actually lip reading me and in a situation like that you wouldn’t have been able to hear hardly anything of what I was saying, so I was really interested by that and that’s how I got interested more in this as a topic and something to kind of bring to Conscious TV. But I’m interested in starting from Jennie maybe your story of your experience and how it’s impacted on your life.
Jennie: Well it starts off really with my father; it goes through the family, it’s a degenerative, hereditary hearing loss, so my grandmother had it, my father has also got it and passed it on to me which that in itself held a lot of guilt for my dad. And my dad’s a very intelligent man, head teacher, both my parents are teachers and I grew up knowing a deafened father, and people get very confused because they either think you’re deaf or you’re hearing.
Jennie: They don’t really see, you know the middle bit, they don’t really understand the middle bit or if you’re hard of hearing, ‘oh that’s like my grandma, oh yes my grandma has..’ you know ‘ a hearing aid.’ People don’t really understand…
Alex: It’s really patronising
Jennie: Yes, but I don’t really get upset with it, I just think it’s ignorant you know, because it’s quite normal to wear glasses. People wear fashionable glasses, but they don’t wear hearing aids, you know, you want to do everything you can to cover your hearing aid up or for it to be as small as possible. But I remember growing up with my dad being quite angry at times, frustrated at times, you know, going to work, not being able to cope, coming home very tired and he retired, took early retirement when I was fifteen and I think to be honest with you, for us it was the best thing that ever happened because we went from having a very angry, stressed out dad, to a more relaxed dad but somebody who was lost as he was suddenly a deaf man in a hearing world; he couldn’t sign, all his friends were hearing and he didn’t really know how to cope with that, and I remember probably when I was about twenty-four… I started wearing a hearing aid when I was eight, hated it, absolutely hated it, never wore it, and my ears, I’ve got really small ears so I’d have these massive hearing aids and I’d lean over and this thing would fall out, it wasn’t very attractive, and I really just didn’t want to have anything to do with it. And I think you know, I was twenty-four I think and I was at work and suddenly something just changed it me; I really, really don’t know what it was but I just thought I don’t want to be like dad, and that sounds like an awful thing to say because I’ve got so much respect for my father but I just thought I don’t want to be trapped in this healing world and I should say after my dad retired, a few years later, he then started up a disability… a deaf awareness company which made him then accept his hearing loss but it took many, many years I think for him to do that and many, many years for him to be able to talk to me about it without feeling guilt.
Jennie: Guilt was a big thing. So then I decided I wanted to learn how to sign and through learning to sign, I think I took ownership of my hearing loss and I actually started to become quite proud of it and proud of my hearing aids and literally wearing my hair up in a ponytail so people could see my hearing aids because suddenly…
Alex: I actually remember one time we went out to dinner and we were chatting about something I remember actually noticing that, that it was like there was no hiding of your situation, that ‘this where I am, this is what’s happening for me.’
Jennie: Yes. I’m very… I wouldn’t say… I wouldn’t go so far to say… I don’t want to seem some kind of martyr about it. I’m proud of it but I’m in two worlds, you know, there’s very much a ‘deaf world,’ deaf community of people who are profoundly deaf and they sign, and the ‘hearing world.’ There’s not really that many of us who are hard of hearing, because I was born hearing and I’m very likely to become a deafened lady, meaning I probably will lose all my hearing; it is going. I sometimes find myself living in two worlds really because when I’m with my deaf friends I can turn my voice off and sign, but my signing isn’t that great, but then when I’m with my hearing friends, I struggle sometimes because I can’t lip read everybody. I can hear, but I can’t hear everything and people get surprised you know, when I can hear certain things, but that’s about tonality, I can hear high pitches better than I can hear low pitches depending upon how tired I am. I have very bad tinnitus which means I have ringing in my ears nearly all of the time, which is something you don’t hear about; people don’t’ speak about that. I actually thought… lots of deafened people feel they have mental health issues, because at the time when I had bad tinnitus, I thought I was Schizophrenic. I really… I thought there was something seriously wrong with me. I thought I could hear voices, I thought I could hear the TV on when it wasn’t on, on people talking behind my back and it wasn’t there, and it was only when I booked myself in to go to a tinnitus clinic, they explained these things you know, but I didn’t know that. There was no one talking to me about any of those things. When I was growing up, I didn’t know anyone like me; I didn’t know anyone who wore a hearing aid, anyone who would talk about these things apart from dad, and he was a grown-up, so I couldn’t relate to that you know, and he was my dad.