Welcome to this edition of World Disability Matters. A show that explores current disabilities matters around the world. The show is hosted by disability champions Jeremy Opperman and Jeremy Warner. Sit back, open your mind and enjoy today's discussion
right and so we are back so I am with my co Jeremy Jeremy W. Jeremy Warner and this is Jeremy Opperman. I'm from Cape Town, South Africa. And Jeremy, introduce yourself.
It is a pleasure to be here with you. I am Jeremy Warner from the United States. Indianapolis, Indiana specifically and I am a bilateral above knee amputee and burn survivor.
Thank you very much. And I am blind. I keep forgetting to mention that being an audio thing, actually, I always think it's superfluous. And in case you're in the wrong podcast, this is World Disability Matters. We are both Rotarians. And I'm very involved and have been so for 20 or more years in the area of diversity, equity and inclusion. That is my job. And we are part of a growing rotary disability awareness movement. I think we could call it or advocacy movement. We have several rotary oriented disability groups. But we've been not only focused on rotary magazine, this podcast, what we're interested in is Disability Matters around the world. And we have special guests or we have special topics like the last second last podcast we had on the show, we were just dialoguing between ourselves Jeremy and I about the issue of trauma. But mostly we like to invite and dialogue with guests. And today we have a very special guest. As you heard, I come from Cape Town, South Africa. And we have another person from Africa. about 4000 kilometers north of me is Kenya. And in Nairobi, we are joined by Jackie Jarrell and Jackie, welcome to World Disability Matters.
Thank you. Thank you, Jeremy. I'm delighted to be here. And focusing is my delight, as I'm a caregiver. Thank you.
Thank you. Yes, Jackie. Well, we're going to be talking about that. Jeremy, w would you like to? Would you like to chip in?
Absolutely. You know, one of the things this podcast grew out of it really grew out of COVID and reconnecting our world in a virtual way. And one of the things that came about from that was the realization that disabilities as diverse as they are, actually make up a global culture. And, Jackie, I know your story. Just a little bit. I was hoping you could talk about how because you're not just a caregiver. You're also you know, trying to work and as a financial adviser, you have a full life. But you are a caregiver for your son. Could you tell us more about that? And I think it's fascinating because he is part of a very, very special piece of that diverse culture.
Yeah, I'm a mother of two, two boys. One is 20 years. The other one is 10 years. But I'm gonna talk about the one with 10 years. His name is Maxwell. He's especially Charles with the profound hearing loss by retro very that means in both ears. We realized that he lost his hearing at two years of age, initially occlusive Obama and all that, but I'm told you to antibiotics. They must have damaged his nerves. Now that immune system was a bit low. So we started a journey in 2014 when I realized that he was three years and he could not to speak. So I decided to visit the EMG Doctor, where he asked me whether I had done any hearing tests. And I didn't know in a way come from I come from Kenya, we don't do such tests, especially when the kid is born or even any other time. Not a nice when the question. So I will send to an audiologist who carried out this the tests and bomb the child was the profound deaf in both ears. Yeah, so the journey began there. I didn't know what to do. I never, I had never come across a kid who had lost her limb, I only knew of people who had been born deaf and didn't mean deaf, like for the rest of their lives. But now in this case, so I asked my doctor, what was the next move? You talked about hearing aids, which we acquaints. But the Iranians could not help him because is a hearing loss was the profound on one year, and CT on the other one, so you did not help him at all. So after a few months, I asked for the next move. Actually, that was the first test. After two weeks, I will visit in a different facility to confirm the results to confirm the same thing, or either now these are the audiologists identifying that even if we got a hearing aid for the second year, it was not going to help him because the knob was completely dead. So he told me, we only needed one hearing it for the left here because the light one and completely died. And so we acquired one earring edge, which did not help him because it was like nice to return, we know that the hearing aid was actually not digital. And it did not help you in short. So and look for the next solution, which I was told it was a cochlear implant surgery, which is never covered by the insurances. It's actually an exclusion the insurance company in Kenya. So it was a big toll because the cost of one sanctuary on one side was going for 2.7 million Kenya shillings, which was not a main task to achieve. And so, oh, I started now, like fundraising and all that. Return the day know that the civil servants came in Kenya, that is the people work for the government in Kenya, actually covered by the National Insurance. I didn't know that. So one of the parents in their parents for him, at that time had already been introduced to appearance for them of like 150 parents who have kids with hearing impairment. So one of the pyramid st if you're a civil servant, by the way, they cover for the surgery, and everything else. So I had injury during the process, through the Father with the civil servants, so within the documentation and all that, and we went to India for the surgery. So
yes, we did. So you went to India for the surgery.
Okay. Yes, yes. Yeah, yeah. Because at that time in Kenya, I unhandy adoring, they had only done like 10 or 20 surgeries. So I really want to, like experiment. And then again, the surgeries only done once per year in Kenya. So I will have to wait, I haven't wait until maybe they send you maybe sometimes in December, every December by year. So we went to India. We stayed there for like for a month, and then came back to Kenya now. And we continued with the speech therapy. Because now after after the surgery actually that is when the work begins because now the child has to be taught how to speak through speech therapy. So we have done speech therapy for the last four years in Kenya. And I thank God for this part because right now Maxwell speaks his agenda. We have walked we continue working. And every day is the learning process for us. Yes.
And his I'm assuming his speech is getting better and better.
Yeah, it gets better. The thing is now too increase his vocabulary. actually matter is included for now as we speak. So he's made maybe is made maybe now in grade five. You only lost one. Yeah, one year so okay for that.
Yeah. And are you? I mean, are you teaching him only in Swahili or you're also going to teach them in English?
Oh, we don't also I agree. So it is a bit complicated for them we do English even. We do English only even for him. He doesn't do Kiswahili because it's interesting for them now. Yeah. So the second language we may pick up maybe will be sign language. Yeah. Yeah, same language here. So
that opens up a new conversation because did he have sign language? Did he learn sign language before the cochlear implant?
Yes, what happened? We didn't do for more sign language, but it was just using verbal cues. Like normal sign, you know? James? Yes, yes. As a way of expressing himself. So up to now I try to attain it easier for him to show what he wants. Rather than speak me. I'm like, if you want something, can you tell me exactly what you want? Speak? Well, I have to be harsh on him now. But I like signing also. So we teach ourselves, ourselves how to sign in the house as well. For the sake of even the deaf community, that is something I'd want to pursue.
What type of sign language? What type of sign language is it that he would learn? If he when he goes to that point?
There's usually the American I would want him to learn the American Sign Language. Okay. Because I think it's universal. It's universal. And I would want him to be universal. Yeah.
But that, but now this is his opportunity to learn or all skill. Now here's an interesting problem. I've noticed that in my country, in South Africa, there's a quite a controversy about the attitude towards cochlear implants from many of the profoundly deaf community. Now, as a blind person, of course, it's it's difficult for me, I mean, I've been in this business a long time. So I've encountered this, this attitude and I struggle to understand it. Do you find it's the same in Kenya? Are the other deaf community a little bit cautious, or are they quite against a cochlear implant?
Yeah, actually, the deaf community, here still is the same issue because for the obvious reasons, every organization is looking for numbers, you know, if you don't join them, it means I mean, if they say, why are you they ask, why are you trying to change God, God's way of doing things? Like if a person if a person is deaf, let me remain deaf? Right, you know, but then we are like Now here there is technology that has favored them, why can be really helpful? So it's usually a group of problem 18.
Right. Jeremy writes that this might be the same situation, even in the states where there's some suspicion towards cochlear implants. It is,
and I think it's I, what I have seen here has because I've met folks with cochlear implants here. And I've, I've met folks who were very against that. And what I tend to see the connection being is that people who acquired their deafness after birth, are wanting to make that adjustment so that they can regain the ability to hear that they lost. Whereas it seems like within that culture, those who were born deaf, are tend to be more on the side of don't change who you are. aspect.
It's interesting from I'm sure that our guys are no different. But what I've heard here is the it's the term deaf culture and interfering with Deaf Culture. Now, from a language point of view, I can understand that because if a deaf person, particularly a deaf family, where you got parents as well as the children who are deaf, you've got genuine mother tongue language. And so I can understand the Deaf culture attitude to an extent. What I can't understand is if as a blind versus if somebody came to me with a piece of technology and said, you will be able to see maybe not perfectly, but significantly better with this piece of technology? And the answer is, of course, I would take it. There's not a blind man around or blind person around that wouldn't want to see better than he can. And so I cannot understand why, in the face of obvious improvement, I remember meeting a man years ago. And Opie never hears this podcast. But I remember meeting a man about 20 years ago. And he was quite difficult. I was thought he was in a bad mood. I couldn't communicate with him because he was profoundly deaf. And he had to have somebody signing in between me and them. And so I couldn't do. And he spoke perfectly, because he had perfect hearing until he hurt his ears in an industrial accident. And so I found him quite hard to work with. Anyway, I didn't see him for several years. And then it was now 20 years later, or maybe 18 years later. And I bumped into him at a conference. But luckily, we're in a private small area and the conference. And I looked at him while somebody said, Sam, so is here. And I said, Oh, wow. Okay, so I better pay my respects is a very, very well respected man. And I went up to him and I said, hello there. Shall we sit so that you can face me and see my lips and to be able to look read? And he said, No, no, I can hear you perfectly. I have had cochlear implants. And he smiled. And I could hear him smiling. And the transformation was remarkable. And he was, I've never come across anything like it. He could embrace music for the first time in 40 years since his original hearing loss. He could communicate. Yes, there are downsides. It's immensely expensive. You didn't translate the shillings into dollars. But I think what you were saying was it's about $20,000 per year for a cochlear implant. That I'm asking you, Jackie?
Yeah. 27,000
maze. I mean, that's pretty scary. That's pretty slick. So in that's in my in our country, that's that's a frightening amount of money with looking at a well over 300 400,000 Rand. And so Jeremy, you ever thought?
Yeah, well, couple things. Because I mean, as I think you both know, I use a wheelchair. But I also use a pair of prosthetic legs. And as you were talking, Jackie, I find myself thinking about how the cochlear implant does for your son, what my prosthetic legs do for me and giving me the ability to access the world on more of a level playing field and not exactly a level playing field. But But even when you talk about the expense, that expense is similar to a relatively basic pair of prosthetics, especially when you're, if you're talking about somebody who was only needing, say, a below the knee prosthetic that's not going to be nearly as expensive as what I deal with. But I mean, just the cost there alone. i The connection, the similarity, I think is is fascinating to me.
You know, and it's it's brings us to a really difficult thing, Jackie, don't you think that you said yourself in Kenya, it's extraordinary exorbitantly expensive. And so it means that an even hearing aid you are saying are very very expensive, which of course they are in I in my country, they're not cheap. No. I want to know have to. My hearing isn't very good, either. And so this really concerns me is how many people are left behind? Because technology is so expensive. In Kenya, this is a real problem.
It's a real problem. Millions and millions. left them with them. Unfortunately, because they cannot afford, they cannot afford at all. Yeah,
yeah. And so when you fundraised and you were lucky because you weren't lucky. I mean, you were fortunate because you had that angle, the in the Civil Service Insurance, which was fortunate that that was fortunate. Now, if you were to try and fundraise internally in Kenya, what's that like? Is there Is there a strong response to fundraising
activity? No, no, no, no, no, no, actually, it's just a matter of talking to my friends. And maybe the match the match someone can give me it's like $500? Not five. Is it? 5000? Is 5050 $50, maybe per person? Even if I talked to 100 people out, how much translate to that translates to? So it was no good to achieve a poor task. People. Do we even like five fundraisers? For medical bills? Yeah. Because, I mean, naturally. We struggle financially. Yeah. So it was not going to be easy to fundraise for that amount of money.
I'm sure. I'm sure. Jeremy, you have a question.
So I do want to hear more about how you you achieve that goal, through the fundraising. But I'm curious. How has since since the technology is so expensive, how has the culture there adapted, so that people who can't afford that kind of technology are still able to engage? Or has it?
The people, I mean, people still remain the way they are, because they don't have relatives or people who can help them. acquire them a piece of hearing it. They remain deaf, Jeremy?
So have you seen? I mean, do our our interpreters who are doing sign language? Are they incorporated into public meetings? Is that taught for folks who can't get the technology? Who can't get the hearing aids?
Yeah, actually, in Kenya, like, all the TV stations, they have the same language. They do sign language. But now how many of us can understand the sign language? Well, I keep on thinking that language should be introduced to schools. And then we have some churches, which are teaching people like the Presbyterian Presbyterian Church, they have a program that they teach the people on Sundays, the same language. So I think we are coming up. When it comes to the sign language, people are getting interested. Okay. Yeah, we're getting somewhere with that.
I have felt like even here in the United States that unless somebody advocates for the fact that they need that, then having an interpreter becomes really an afterthought when it comes to public meetings, and it doesn't necessarily happen. And I've been at meetings where people who are deaf blind, have interpreters. And that is very rare and beautiful to see. But, but then I've also been at meetings where there's no way that they would understand what was going on in the room, even if there was somebody simply interpreting sign language.
Exactly. And exactly Ebru that was actually my burden for my son. Because I was saying to myself, I can I can, I can learn the same language for his sake, and my household, but what about the society? How will we get integrated into the society? I know society has never really embraced persons with disability. So I didn't need NT to be independent in his own way. You know, when he's away from the family, and all that, yes.
So that's a that's a very important point, because it's the big debate between should should a deaf person embrace oral skill, in other words, verbal skill, by being able to talk and lip read. Or sign only, and I mean, years ago, Can y'all remember the wonderful movie very, very landmark movie called Children of a Lesser God? In the 80s, and it was a it was a profoundly good movie. It involved a death a really death I forget her name. recently. She She was awarded and she was she was actually a Deaf actress, which was William Hurt opposite. And it was all about this debate, is should the death be taught oral skill? In other words, verbal skill speaking skills, or should they stay Oh, Only with time. And I've got to tell you from from the work I've been doing as a just a straightforward that disability inclusion activist. I'm afraid that the, the deaf people who find the jobs and who've managed to get further in life are the ones who have verbal skill. The ones who stick with sign only struggle. Because as you say, very few people now in my country, we just about to have a revolutionary moment because sign language is about to be accepted. As the as the as the we're just about to be accepted as the 12th language of 12, like 11 languages in our country, and sign language is about we made the 12th. And I feel for their enthusiasm, because I think they think that it means everyone's going to have to learn time. And people aren't like that, they're not going to learn, some people will learn sign as a courtesy. But the trouble, what I've noticed is that and I've got a great friend who I used to, I used to hire a lot to either be my interpreter, or to teach sign language, because that's what she does. And her greatest frustration is that she can teach people with great enthusiasm, and they learn with wonderful enthusiasm during the course. And then they never get to practice. Because it's actually quite hard to find profoundly deaf people when you suddenly want them. And so they don't practice and then they lose their skills very quickly. And so I, I personally can't understand why oral skill, verbal skill is so controversial and why more deaf people don't embrace the idea. We have a great friend in our, in our, in our club, and in our advocacy movement in rotary here. And his name is Mark wafer. And he's an exact example of that his mother absolutely refused for him to be taught by in, in classic deaf schools. And so he was taught verbal skill from from a very early age. And you can I mean, he's I mean, can you you know, Mark as well as I do. Would you agree that Mark speaking skill is excellent. So, I was actually, and you've come, I didn't mean to say, Can I pick up on? Jeremy, you've come across a market, you know, his verbal skills are good
night. Yes, absolutely. He is. I understand him anytime we're on a zoom without accommodation.
Exactly. And that's fascinating, you know, and just, I just wish there would there was there was more open discussion around this rather than angry. Have you noticed that, Jackie, that there's often a level of anger about this issue? Yes. So much. Yes. Which is, which is unfortunate. So, Jackie, you're a Rotarian. You've been a Rotarian for five years, I believe.
Yes. I've been a Rotarian for five years, district 9212. And you're not sure clap of milimani. It's based in Nairobi. We meet on Wednesdays. Yes, ended up being observed that the clap and mean director for the past three years, and now I'm the incoming president elect.
Is that starting in July? Are you starting in July?
So I'll be the president in 2024 2023. Actually, yeah, that's
me too. I'm also incoming president for 2023. That's great. That's great. Tell me something your club. Have they ever focused at all on disability?
Not at all. Actually, our club we do mostly water and sanitation. Education, we focus so much on education. That is educating the kids from the slums that is in high school. And now we are moving to university level. So those are the two major courses that we support.
Okay. Okay, well, that's good. Somebody's got to do want to
introduce the disability part of it. Because that is something that really bothers me. And I feel that everyone should should advocate for the person sleeping disability, but we normally have the sunshine. Larry, there is In the districts, we set aside a day. For the children living with disability, we collect them from all the counties in the country and entertain them. Yeah, because yeah, those who may need wheelchairs are normally given. And basically that is the main type of disability that I've seen being focused in this country. The physical disability, which is actually the wheelchair and all that.
And what about the blind? Have you any knowledge about activity in Kenya, about the blind and visually impaired? I'm just interested.
No, I've not. I've not come across any.
Okay. Okay. We'll have to find somebody in Kenya
to be focused on Yeah.
All right. Well, then there's something. Yeah. Jeremy.
Yeah. Um, so I'm curious does, are there any additional accommodations that that your son needs at school? And, and along those lines, Kreskin about the blind? Jeremy, I'm curious from that, how the country is embracing and trying to be accessible for people with disabilities? Is there anything being done for people with intellectual and developmental disabilities? Aside from the physical? Or is it really just focused on the physical and the sensory and the, the intellectual and developmental and an emotional is not really, in the picture at all?
Really, Jeremy Wu, I must say that, in that area, we still have a long way to go. still struggle. So much needs to be done on that area. Yeah, yeah.
And tell me the legal situation in Kenya, is there? Is there legislative support in Kenya, towards disability, for instance, such as the Americans of the Americans with Disabilities Act? We, of course, in South Africa don't have a overarching piece of legislation, sadly, then we absolutely need one. But in Kenya, what is your knowledge about
that? Yeah, now in Kenya, we have the National Council for persons with disability. There much they do is give them like assistive devices. Right? What a maximum of like, is it 10,000? No r&d dollars. Okay. Yeah. All right. So
there is isn't you can access some money like that.
No, no, no, no, that is a much we can do and maybe pay school fees, a certain percent. But pattern, right? To buy yes to buy should not exceed the one and the one and 1000 Kenya shillings. And it's a very long process. Because most of the times when you try to lobby for any of that, for many of the parents who are struggling, they said no funding. The body says yes. So that's why I said there's still so much that needs to be done in that body. To assist our children. Yeah.
So that comes back really to that need for you to have to advocate and for you to have to do the fundraising to get the resources that you needed for your son. Yeah. So can you talk more about that and, and just how your community embraced your efforts or not.
Really, it was a first of its kind for the people around me, my family, and all that they thought it was a very tall order. But by the grace of God, we managed to achieve that. And they congratulate me for that because most of the parents maybe would have hidden the kids. You know, the kids are not turned out. They like the way I advocate for my for my son, because even on my social media platforms, I'm always talking about deadness, cochlear implant, and something that can be done about it. I'm very passionate about this because I realized early intervention can rip collect all this and make the child have a better life. Make him independent in future. So advocate for early intervention Proper schooling, no assistive device, then proper schooling, then you should have proper support system, whether at home or in school, just around people who understand him, people will treat him kindly and understand him. So that way, we have been able to assist him. And we continue helping him, because slowly by slowly is becoming independent. And that is my main aim. Yeah, my problem with a cochlear implant is that the expense does not stop there. Excuse me. They're actually the accessories are very expensive. Like the battery. The battery itself costs around 40,000 Kenya shillings. That translates well, to like 400 USD. For me it? Yes, we have the cables and everything. Everything is very expensive, about a cochlear implant. But it is what the speech therapy sessions per visit to the therapists costs around 3000 Kenya shillings, that translates to 30 USDS. So it has been a very expensive process. And for an ordinary Pilant. Who has no insurance cover? Who has no any kind of help? Unfortunately, the kid is forced to remain Devon. Yeah,
yeah. Would you ever consider getting the other air down as well? If you could?
Yes, yes, he is. I keep on saying In fact, you keep on asking for it. Because it's cool made up two of them is in a school? Actually, let me tell you about the school. Now the owner of that school, has two kids of our own who are hearing impairment. Unfortunately, she passed away last year. So it's an integrated school with the with like 1515 children with a hearing impairment. But the rest are normal. So home away from home from him. And they relate well, they take care of him. Well. They understand about this journey. So they're a bit patient and kind with him. And it is a bit second best thing that happened. decision that I made for him. Yes,
I'm sure. And you know, the beauty is, is that he is young. You know, he is only 10. So he can only improve from a confidence and a language point of view.
Yeah. Yeah, everyday keeps on shocking me in saying new ones, you know, like, now right now. It's everyone that has spoken. So you hear him say something, then you're like, where did you get that from? I keep on telling people around here. Can you make sure you speak the proper language here? Because if you say anything negative, it will peek and see that it's a nice thing to say.
Yes, yes. Yes, one has to be careful. So, Jackie, this has been a really mean it's been something of a departure from our normal, our normal style of podcasting. But this has truly been an enlightening session. And I really want to thank you for your honesty. And Jeremy, would you like to close up with Jackie?
Absolutely. So Jackie, you are actually joining Jeremy and I and a few other fellow Rotarians for a advocacy webinar on July 7 at 10am. I am really excited to hear more about your experience in that as we go. It's been such a pleasure talking with you and seeing the similarities between our cultures around the world and what and the similarities especially between the Deaf culture as we see around the world. Thank you so much for being with us. Do you have any final words that you would like to share?
I'd like to say that we just need to put more effort and emphasis on them focusing because like for the my bandit leader is on the hearing impaired children because via one shot, if you cannot hear, you can never speak. So that's why I said, I'm the one to speak for these children, I stood up, and I said, in my own small way, I'll be advocating for this. And I'll be of help wherever it will be to any person. So by talking in social media and all that, so parents keep on calling me asking me for advice and all that. So at least I show them the way because for me, it was a very painful journey. If I may say, if I can make someone's journey, less painful, even by a minute, and be very plant, thank you.
That's about as good as it gets. As an ending, I have to say, and, and I echo that I echo that as a, as a person who's had a significant visual disability all my life, I completely concur. And it breaks my heart when disabilities are exacerbated by a lack of resources to technology or to therapy, or to education. And I can't help thinking that the world misses the point so often about this issue. And and that we really need to spend more energy, looking at how we can save people from unnecessary burden with disabilities that can be dealt with, either through intervention management, education and technology. And so thank you so much. And Jeremy one one, I want to know if you don't mind, I'll wrap up. And and say, Thank you so much for sharing this interview with me, I found it really amazing and stimulating. Jackie, thank you for your time. And for all your energy in your advocacy. And this is the end of another World Disability Matters podcast. Join us next time, which will be closer to our as Jeremy pointed out, we are going to be holding a webinar shortly on the seventh of July. I'll be the moderator. We have representatives from Kenya, Brazil, Egypt, America, and India. And so that should be a fascinating, fascinating time. And we will see you soon. Thank you.
Thank you for listening to this episode of World of Disability Matters. We would enjoy receiving your thoughts, questions or comments about the podcast. Please write to World Disability. matters@gmail.com Have a good day and we look forward to welcoming you back for the next episode of World Disability Matters.