#164 You Don't Know What You Don't Know with Rebecca Mansell

A wonderful conversation that is also unique within this podcast, as I'm joined by Rebecca Mansell. Rebecca is deaf and so we are joined by her interpreter Stephanie as we talk about Rebecca's journey to ensuring that the deaf community of the UK is represented in her role as Chief Executive Officer of the British Deaf Association.

You can see this conversation in BSL here https://vimeo.com/867161412/26b317805a

www.bda.org.uk

Transcript

Anne

Hello and welcome back to what do you know for sure podcast with me Anne Hughes. This week's podcast was so important and unique among all hundred and 60 plus podcasts that I have already done. I was joined by Rebecca Mansell, who is the Chief Executive of the British Deaf Association. This is also the International Week of Deaf People week that is initiated by the World Federation of the Death and that commemorates the first World Congress of the World Federation of the Deaf held back in 1958 in Italy. This is celebrated every year and it was really interesting to have a conversation with Rebecca via her interpreter Stephanie about What life is like for deaf people living in the UK and the world. Also, some real reflections, some real things that I just didn't know. 

I feel as if there is a call to action for us all in this conversation to be supporting the deaf community in the UK and helping them reach all the places they want to go. BSL wasn't even recognized as a language in the UK until 2022. I still can't believe that. So, this is an amazing conversation that I hope that you really do enjoy and I'm so grateful to Rebecca for having it with me.

Anne

Hello Rebecca and thank you for joining me on the podcast.

Rebecca

Hello, Anne. I'm so happy to be here. Thank you very much for inviting me. I'm really, really excited for our conversation. 

Anne

Me too. Tell us a bit about you. 

Rebecca

Right, so... I'm Rebecca. I'm deaf. I'm using a British Sign Language interpreter. My interpreter, Stephanie, who's on the call with me today, will be taking in the sign language to then process it into English, and then again vice versa for you, Anne.

I work for the British Deaf Association. I'm the Chief Executive, and I've been with the BDA for around one and a half years now. It's been really exciting. They are the only national organisation who represent BSL and Irish Sign Language, ISL, in Northern Ireland. We are a members community led organization and focus on our sign language rights.

Anne

That's perfect. We met in London in July, which was lovely. And so now we're a few months later and I know that you've been thinking about this question. So tell me, Rebecca, what do you know for sure? 

Rebecca

Very good question. I've been doing a lot of thinking. So, what I actually know for sure is you don't know what you don't know, right?

This is probably a bit of a long story. It's based on my lived experience of growing up hearing to then become deaf when I was four and how my life path kind of segway in a certain way. But also, this week is a really special week. It's the international week of deaf people. So that's why I thought it'd be a nice link.

Anne

You don't know what you don't know. How did you come to realise that and how does it show up in your life? So really, the realisation started when I was around 25 years old. Obviously, I grew up hearing and I became deaf at the age of four. I had meningitis. Then straight away had to adapt to life as a deaf child.

So, my childhood was difficult. I was full of frustration. I had a lot of anger issues, and this is because I could hear, but then I couldn't. I couldn't communicate very well with my family. Things became very hard. I felt very left out. I tried to follow the conversation, but it would just go straight over my head, and I wouldn't understand.

And at the same time, my parents, they were doing their best. They were only taking advice from the hearing professionals. They were listening to them and then making decisions on what was best for me. From that information, did my parents know everything? Like the things that they didn't know. There's a question there.

Growing up, it was really, really hard, really frustrating, issues communicating. There was no sign language available for me. It was just me as a profoundly deaf child relying on a hearing aid. And also, I go to school and the teachers would expect you to be able to hear, but I physically couldn't hear. So, it was really difficult. 

When I was 25, I went traveling, backpacking around the world, and I met the deaf community in Sydney. They were all signing fluently, it was beautiful to watch. Auslan, the Australian sign language, is a little bit difficult different from BSL, but its influence is BSL still, it started from those roots. Now there's a lot of American sign language influence as well to create Auslan, so I would sign with them, I developed my sign language linguistic skills there, and then a few weeks later, I was completely fluent. And then I went across to New Zealand and I worked there at the Deaf Club. And that's how my fundraising career started, actually. And I would sign with all the members of the deaf community there. 

When I came home, my family and friends were gobsmacked. I was from an oral background. I couldn't sign to this fluent signer. I'd really developed my character, my deaf identity. I'd embraced my deafness. I have my language now. And I grew up without sign language.

And looking back, my parents told me that they actually went to learn sign language. This was at their local deaf club in Oxford. And when they told the audiologist, we’re learning sign language for our daughter. And they said, Oh no, don't sign, don't sign, it'll affect her speech. And they were like, Oh gosh, and they dropped the initiative altogether. 

I therefore obviously grew up with my parents thinking that they knew best. Because they didn’t what they didn't know. Whereas sign language actually supports deaf children. If we’d used both languages, it would have significantly helped me within my family. So that aspect is really, really interesting. And I'll talk more on that later.

Anne

Isn't it interesting how difficult that journey must have been for your parents because they were doing the best they could, with what they knew and then you grow up and you go away and you find a new way to communicate. How did your relationship with your parents therefore change? I'm sure they were glad that you could communicate but there must have been a lot of emotions for them in that.

Rebecca

I think that they were happy that I became content in myself. I was so much happier within myself. With this, I felt that this is me, Rebecca using sign language. This is me. I'm not trying to be hearing. I'm not trying to, you know, speak, but my speech isn't perfect, it isn't always intelligible. I'm not, I wasn't trying to fit in with the hearing world, which was so difficult.

Now I had this new acceptance of my deaf identity and for me to be proud of my culture. I used to be really embarrassed to be deaf. I used to feel ashamed. I felt awkward, almost. And now, no, I'm proud to be deaf. That's all pushed away. And this is me. And then when I had conversations with my parents, and I said, why did you drop out? You should have ignored the audiologist. And they said, we just didn't know. They told us that they knew best. So, we listened to them. So, then they felt angry with the audiologist, the professionals, giving them the wrong advice. However, the audiologists, they are the most informed about the ear. They are scientists of the ear, how to fix the problems of the ear, but they don't know about language. They don't know about linguistics. They are not experts in this, in this area. So who are they there for to say this - that sign language will affect speech. Who are they to say? They don't know what they don't know either. 

Anne

I think it's so interesting, isn't it? I often think within a medical setting that we can so often give our power away and that we think somebody else knows better and I am always encouraging people to question. Even if they've got doctor on their name, it doesn't matter, you can still question, ‘Is this person giving me the advice that's right for me?’ I suppose. 

But when you think, as you acknowledge, they don't know what they don't know either. 

You sit here in life, as we all do, we don't know what we don't know. How does that open you up to your awareness of the world? You know that you know what you don't know, so there's lots out there to learn. How does that make you walk through your life every day?

Anne

Yeah, exactly. Really good question. So, the moment of realisation for me, I was preparing for the BSL conference last year and that happened, I think a few weeks.

After BSL was legally recognized, so our language has this legal ratification in law, we felt really proud. We felt finally our language is being given, like the recognition that it truly deserves as a beautiful, fully fledged in-depth language. I've never learned BSL, just to make a disclaimer, I have no qualifications in BSL.

I have an English G C S E a b, a good grade at that time. Very proud of that achievement, but I have no equivalent qualification in British Sign Language, I just sign. I don't know if it's right. I don't know if the linguistics, the grammar, the structure I'm using is correct. My interpreter is far more informed and skilled in BSL than I am, but it's my own language.

So when I was preparing for the conference, I was putting together the speakers, looking through all the notes, and then one day it came to me. I thought, Oh, let's have a look at my previous school reports. My parents had kept everything, absolutely everything. And I went through them, and I found in the attic, this one folder and it was jaw dropping. Amazing. 

I was reading through, I think my school report from when I was around eight years old. I looked through and I couldn't believe it. It was dated 1980. So, you can work out my age now. I was around eight at that time in 1980. So looking through it, they said, Rebecca, she's been trying to fit in with her speech and language lessons. We've been trying to help her to hear, but it never seems to work. She tries really hard, but it doesn't work.

And I'm reading through this descriptive and I'm thinking the more and more reports here that are repeating the same thing. Oh, Rebecca's been trying so hard. It just doesn't work. And you're thinking, common sense should be applied here. Give her BSL. She can't hear. She'll never be hearing. 

It's absolutely mind boggling if you read through these reports. These are the experts on education, they certainly are not. They've tried for years, years to help me hear. And I just physically won't be able to, but they're flogging a dead horse almost. And I just read through them thinking, wow, it's laughable.

I'm not an expert on audiology. I'm not an expert on speech and language therapy, but this whole narrative is ridiculous. And the ironic thing is the report that was written in 1980 exactly 100 years before this was the Milan conference in 1880. And that was the pivotal moment when hearing people made the decision to ban sign language within education all across the world. And that policy sustains even today. 

So, 143 years previous to today, and then I'm reading through my school report in 1980, so a hundred years after this Milan conference and I'm like, this is really dumb. Why are they trying to make me hear, for one, and now 43 years on, from my school report, the same is still happening to our deaf children now! They definitely don't know what they don't know? 

Anne

It's really shocking, forgive my ignorance I suppose, I never realised any of this. It's like, the comparison I would make would be like trying to get a child in a wheelchair to stand up. You know, it's ridiculous. No one would do that. They're trying to get a deaf child to hear. It's, it's actually, I can't believe that's what's happening just now. 

And so, I know that you're the chief exec of the British Deaf Association. You've got a lot of work to do, haven't you, Rebecca, as an organization? 

Anne

Absolutely. We've got very exciting things coming up with our new strategy. We've been revising this ready for our AGM in November this year. That will be from our members voices. We've been collecting their feedback and they've said our language has been historically oppressed, ignored. We are second best. We're an afterthought. Your ears don't work. We'll give them BSL as a second option. No, it should be an active offer of both. British Sign Language and hearing aid technology or cochlear implants. Give both to the child. The child is still deaf, even without that technology. 

These old fashioned practices just simply need to stop. And we deserve respect. We are intelligent. We're academics. We don't have learning difficulties. We have a fully-fledged, beautiful language that we use. Now is the time to allow our language to flourish. Exactly like spoken Welsh. Beautiful language and Wales is a bilingual country. So, we have our bilingual languages in England, Scotland and Wales too. 

Anne

Yeah, and so, you're still in the place you're in. You know that you don't know stuff as yet. So, the amount of learning you're going to do, I suppose, you're always open to the fact new things are going to come up, new learnings, new knowledge.

Rebecca

Yeah, absolutely. We've set up a research forum within the British Deaf Association, there are around 12 different academic institutions in the field of study of sign language, of interpreting and everything it entails they're all over the UK. They've had papers published over the last 50 years arguing what I've just explained to you, what we've just been talking about, the bilingual mode, the benefits, et cetera, to educational attainment and how sign language does not affect speech development, does not impact English, written English, but this has still been ignored.

The research forum is to basically have everything evidence based and collect all that together. But we also have the BSL Alliance set up. 42 deaf organizations have joined the Alliance and also members of the regional membership forums have joined as well. We're setting up different regions, I think nine, maybe 10 different regions within the Alliance.

So, we'll have individuals, members, we'll have organizational members, and we'll have academic members. So all together over the next 10 years, we will collaborate our work to create a movement. What we want to do is influence policy reform. Because now is the time. Our language is legally recognized in law, April 2022. Now it's time to take BSL forward. April 2032, where we will have a bilingual world for our deaf community. 

Anne

Amazing. Because I am a campaigner, Rebecca, you know. Is there anything that the hearing population can do? Because I'm really shocked by what I've learned today. What part can I play in how this can move forward? Is there a part for us to play? 

Rebecca

Oh, you are absolutely in. We would love to have you to join us to become BSL allies for our community. We need more and more BSL allies to join. You can imagine a movement like Pride, for example, has been so successful. Imagine how many years ago when you couldn't get married as a gay person, gay couples, they couldn't adopt. LGBT rights didn't exist. Now look at this community, absolutely brilliant and flourishing. And we want the same.

We want Hearing people to support our cause, to support our movement, to join us, to become members, read our newsletters, follow the BDA social media and spread the word, spread the message of sign language. Let deaf people lead with your support. Come behind us to achieve our outcomes and definitely please, please support the BDA. 

Anne

Thank you so much for sharing all your wisdom today, Rebecca, and I look forward to supporting the British Deaf Association and also obviously watching the journey as it moves forward. 

Rebecca

Great stuff. Looking forward to it. I'm happy to talk to anybody about anything, give presentations, raise awareness out there, but thank you for your time talking to me today. I really enjoyed it, Anne.