Hearing Loss LIVE! Talks with Rachel Barber about Inclusion

We sat down with Rachel Barber and talked about how being #HardofHearing and a family #Caregiver led her to open her business: Living 4 Moments. Rachel helps #AssistedLiving facilities have better #Communication & participation with their clients.

Show notes:
Living 4 Moments
https://living4moments.com/

Transcript

Welcome to Hearing Loss LIVE! Talks Julia: Good morning and welcome to Hearing Loss LIVE!  We hope you are remembering to like, subscribe and share. I also want to remind folks our next round of classes have --are right around the corner. If not they I think it might be the same week they start that this comes out. So if you have not signed up, please check out our classes. We have our lipreading concepts and our lip shapes, one and two and advanced lipreading. If you're unsure what one you should sign up for, go ahead and shoot us an email, go to hearinglosslive.com and get in touch with us. We have a special guest today. We are excited to be working with Rachel Barber. She is the I'm going to say owner, though that may not be right. It might be manager, something like that, owner of Living4Moments, a really great organization in the United Kingdom. Do I have that right that she has weathered the pandemic storm, I'm going to say, and she has a hearing loss. And I wanted to talk about her hearing loss journey, and I really want her to talk about living for moments, because I find what she is doing in, in the United Kingdom is going to be something I hope we can get more of here in the United States. I'm going to say, Rachel, give us some information about your background and yourself and Living4Moments.

01:39

Rachel: Thank you very much, Julia. So it's a real pleasure to be here with Chelle and Julia today. I started Living4Moments in 2020 which was the start of a pandemic. And originally it was set up to support people living in care to improve their quality of life. And this is because I worked in care for a number of years, and I came across many professionals making negative assumptions about the ability of individuals living in care homes, and I was able to see beyond those assumption and to really listen and observe what residents wanted to happen in their in their places where they were living. And this is partly because I have experienced assumptions throughout my life as a severely deaf person from birth and more recently as a profoundly deaf individual. So my journey of somebody with a profound hearing loss is something that I'll be sharing during this podcast, because I, as I said, I was severely deaf most of my life, but became profoundly deaf in 2017. The change was dramatic and really made me aware that I needed to share my journey with others, encouraging people to be more inclusive of people who have whatever disability and in my case, in hearing loss, and that's how I started. So thank you.

Chelle  03:09

Chelle: That is quite the journey. I wanted to know if you use sign language and how that helps you, if you do.

03:27

Rachel: So, I I mainly use spoken language, but I have started learning BSL, which is sign language, because as part of my journey of change of hearing, I became aware of how many people in the community are excluded because of lack of provision for British Sign Language users. I myself, I'm not proficient enough to be able to converse at high level, but I am able to do general introductory talks, and that's something important to me, because if I'm training on inclusion, I need to be leading by practice. So that's something I'm learning at the moment, right. Much more to do.

Chelle  04:08

Chelle: Yes, I totally understand that. Because I've been trying to learn American Sign Language for many years, at least 14 years, I will never be absolutely fluent in it, and I do use it occasionally, but it's it's more hard of hearing people that I deal with. People have that misconception that hard hearing people use sign language all the time. I will tell people I'm lipreading, and they will start signing to me, and I'm always like, at what point did I say I use sign language? I said I was lipreading. So for me, that's one of the misconceptions I deal with all the time. And there's a very small population that use sign language in the United States. So most of the time when I'm out and about, I run across people who know sign language, who are hearing and learned it, and they're just excited to show me what little they know. Do you run across that too?

05:18

Rachel: It is, I mean, at the same in the UK that it's a small population who use BritishSign Language, and they are very skilled at it, and they are very close community in many ways, because they have been excluded for so long. But you are actually right, the assumptions that people make as soon as you say you're deaf or hard of hearing is that you sign. So I had a classic situation when I was going to benefit advice and they provided me with an interpreter which which was not helpful at all, and in fact, takes away a British Sign Language interpreter for somebody who really needs them. And so it really paid to listen and to ask individual what your needs are, don't assume is my, my, my motto, keep, keep on saying to people, please don't assume, ask if in doubt. And hearing loss, as you You said yourself, the spectrum is enormous, so hard of hearing usually includes mild or moderate. I would say deaf from severe to profound. Small d includes everybody. But different ways of communicating. Capital D is sign language. It's a predominating form of communication.

Chelle  06:37

Chelle: Yeah. And I admire the deaf community here tremendously for everything they have done and gain their independence. So to speak away from spoken language, which they really don't like. I mean, lipreading without hearing is extremely difficult. Me and Julia say that all the time, even with a little bit of hearing, you can lipreading better. But we are we need to move away, I think, from that over here in the States, because it's wrong to assume that most of us use sign language. So I should stop there. I'll let Julia go.

07:28

Rachel: I just think one of the things we ought to be aware of that when children have severe profound hearing loss, I personally, and this is a personal choice. This is not something you know, at the end of the day, people need to make their own choices. But I personally believe that we should be offering both sign and spoken language, because children would, will develop and choose which works best for them. And if you think aboutbeing bilingual, why not the same with it, with the within the Deaf community? Why can't we have, do both? And in fact, sometimes it probably will be really nice to have a break from spoken language, where, if you, if you're fluent in sign language and vice versa, give a change, and also be able to integrate more widely. And give that option, you give more opportunity to spoken language, which is a reality. I'm not saying that's necessarily right, but that's the reality, is that you do have more choices at spoken language, which is why I think if you can offer both great but don't just choose one or the other, because that limits people choices from very early on. So learning sign language as an adult is much, much harder because it's a very different part of the brain. That's why you, you and I are struggling with, with with sign language, because actually it's auditory and visual parts of the brain is what is a very different part. So your neural network and your auditory area of the brain will be well, much more developed than the visual, whereas, if you grow up learning both, both will be very strong and be able to complement each other.

Julia Stepp  09:07

Julia: I agree with you, Rachel. I think it would help promote better education too, to our deaf and hard of hearing community children. Again, personal opinion, but I see benefit for both. Helps with body language. Helps, helps so much more understanding, to have access to both languages and opens, I want to say a whole slew of other things that could possibly happen in your life, or you know, I don't know. I just think it would. It opens you up so much more to what life might have to offer and career paths in general. I I love sign language. I actually reception wise, can understand it better than I can sign it. Bu that's because I'm around interpreters, because I'm a captioner, so But I often get just enough wrong, sometimes that I'm doing Oh no, no, no. I can't watch the sign. I gotta look down. Just look at my keyboard. Just look at my keyboard so I do get it. Being a Deaf business owner. Give us some insight on, I think you talked about a little bit, but I want you to talk about how that has you mentioned when we were talking earlier, and I'm sorry, because I get lost in my words here, somebody you were working with really supporting you, because you're bringing deafness to the care. Put it at a different level than anybody who's who's done training for caretakers in the past. And I kind of want you to talk about that, because I, I think that's important for people to understand just what people with hearing loss, whether you're a small d, hard of hearing,  capital D, there's a level you can bring to businesses.

11:15

Rachel: Yeah, I would do both care business started. So in terms of the -- do, as somebody with a hearing loss, I was started working in care, and became very aware how much the environment was not suited for many of the residents. So for example, there was a lot of background noise. There were a lot of banging, pop machine going on, trolleys, on hard floor, hard furnishing, large rooms with little lighting, and made me realize that the environment was not suitable for many of the residents to be able to engage and join in activities that they wanted to. So that was a barrier. Just because I am a deaf person, I was able to go into that environment, no wonder they're not coming out of their room to join in activities, because there's a barrier there. And my staff team didn't see that. And having a deaf person was able to bring in a fresh perspective. And so that just one example of seeing it was shown as perspective. But also the other thing which I changed was being able to speak to individuals on a one to one basis to really connect to know them, because so as again, staff made assumptions and often incorrectly, of what they can and couldn't do, and whereas my experience of having people make incorrect assumptions about me made me motivated to really find out from every single resident, what they what their interests were, what they would like to see happen in the care home. So we actually created new opportunities for everybody using their skills and interest. So the activity changed. They were no longer the big generic activities that go on in a big care home, like bingo or whatever. And some of them really don't interest me and interest many of the residents either. And instead, we had smaller group where we found talented people, talented residents, who could share their skills with support from the care team to develop activities that were more in their interest, but also they they were had a sense of purpose, because they were able to share skills that they still had and that that sort of change I created in the care environment. In terms of my hearing loss, and in a business environment, I'm able to show a businesses how inclusion enabled businesses to win loyal customers and employees. So inclusive techniques, making sure people are aware of how to respond to someone if they ask for music to be toned down, noise is a big barrier for a lot of people, not just people with hearing loss. It all sorts really. People with living people living with dementia, people with brain injury, people with sensory overload. And so when I share with businesses that how changing one one thing, reducing noise, can make a big difference to attracting customers and employees in their workplace, that's just one example of how small changes can make a big difference, and when people are there. 

Chelle  14:22

Chelle: I love that. That's the ripple that goes out when you're taking care of one you think you're taking care of one group, but it's just, it just expands and keeps going. So I think that's wonderful what you do over there. And like Julia said, I hope we can do that here in the States, because-- I call it with hearing loss, where I'm in an audience or in a group of people and I can't follow things, I have to sit pretty and just nod my head and smile and look nice, because if I raise a fuss like I can't. Hear that we need to change this. Actually, I'm not like that anymore, but I used to be and sitting there pretty and being polite when you understand nothing is just awful.

Julia Stepp  15:14

Julia: It fits right in with our bad apple month that we're doing, Rachel, this this month is we're going to talk about the bad apples when, when you have that bad apple, and what is a bad apple? 

15:20

Rachel: Yeahm that sounds an interesting topic, because you're absolutely right, Chelle, we so often suffer in silence, and that's wrong. We should be able to ask for these small changes, and these small changes doesn't just impact on you or me, it impacts such a wide group of people. So in the UK, I think you've probably seen some of my posts, but I share about the value of the purple pound. And in the UK, the UK economy loses 274 billion pounds a year from a lack of inclusion of disabled people. Now this is I can share an example how this happened. People who are excluded from services will not only not go back to that service, but their family and friends are less likely to go back as well. So for example, for me going to the cinema is I need to have captions, because otherwise, I just don't hear what's going on. If I background music and speaking with no faces, I just don't follow so I'm lost. Now, captions in cinemas is very, very rare. They tend to put it on at antisocial times when I'm working, and rather assume that I don't have any family or friend to go with, etc, so I just don't go. Now, if they provided captions for at least 50% of their shows, they in the UK, in New York alone, we calculated from a population of 33,000 people, and even if only 10% of that went and 10% of those 33,000 wanted to go for cinema full time a year, it's a lot of million pounds a year just in York alone. Now it just shows how if they just change things. Now, capturing performances are not just valuable for people what they're hearing on it's also people useful for people with processing disorder, people with English as a foreign language. It people who are young, people who are so used to having captured on YouTube, etc. So it's more it's been more normalized. So I don't, I don't understand why cinema can't have at least 50% of their performances of shows with caption. So that's a sort of change where cinemas are losing a huge chunk of the population just because they aren't unaware of the benefit of captions. I

Chelle  18:03

Chelle: Julia, this is where Julia and I look at each other, because we both have something to say. And all I wanted to say is you bring a strong inclusion message, and I really appreciate you being here with us to talk about this, because you bring up some excellent point go ahead. Julia, no, no,

Julia Stepp  18:24

Julia: You're right. I honestly, I think we were thinking pretty much the same thing we were coming up on 20 minutes. And I just, I, I love hearing that the inclusion is a struggle, not just here, but other places, and how much we really still need to work together, and if we did, would just make such huge changes to why all of those groups that are working with movie theaters here in the United States are so important. We get really lucky here in Utah, we have a local chain that offers open captions in multiple theaters and multiple times, and it's super fun, and we think we just little tweaks and changes and no one the right person, and we've been able to help other states learn from us. And so I love that any other questions or thoughts before we close it up.

19:27

Rachel: Thank you very much for all the questions. So inclusion is is a journey, and I would encourage anyone just who starts this journey just take small steps and listen and learn from each other. I've learned so much from a disability community, a disability community, a disabled community. So for example, I didn't know originally, when I first started living for a moment, I had to put alt text in all my images, put in a hashtag with capital. We all make mistakes, as long as you start and try. I was saying I've. You people trying, even if you get it wrong, I'd still prefer to work with people who get it wrong if they're trying. So just start that journey as my key message here, and listen and work with disabled people. We all can help you with that journey.

Julia Stepp  20:15

Julia: Thank you. I love that. I'd like to thank Rachel Barber of living for moments, for joining us today. We love having special guests. It means a lot to us. We hope you are having-- there goes, Julia. We hope you are joining us for our let's talk Tuesdays. The first Tuesday of every month, you can sign up at hearinglosslive.com.  Bye.