Podcast: Change Makers meet 2030 and Counting

The Disability Download

In this episode, we chatted with Jacky and Amber. They talk about their experiences campaigning for disability inclusion as Youth Reporters and compare the challenges and barriers for people with disabilities in their own countries.

Trigger warning: This episode makes references to sexual violence.


Erin O’Reilly: Hello and welcome to The Disability Download - brought to you by pan-disability charity Leonard Cheshire. I'm Erin O'Reilly and on this podcast we respond to current topics, share stories, and open up conversations about disability.
Hi everyone and thanks so much for tuning back in. So you'll probably be aware that on 3 December we celebrated the International Day of Persons with Disabilities. So for this month, we thought, why not do a bit of an international episode?

So my colleague Sam brought together two campaigners from different parts of the world to compare notes on disability rights and how inclusive we actually are today. So, we have Amber who's a citizen reporter on our Change Makers programme in the UK, and we have Jacky who was part of our 2030 and Counting citizen reporting programme in Kenya. For context, citizen reporters are young disabled people who we've worked with, and they've been trained by an organization called On Our Radar and they got to be trained on reporting and campaigning on the issues that matter to them. 

So Amber and Jacky are two people who are fighting for rights like inclusive education, employment and accessible transport. I guess, you know, we wanted to know how different are things for you based on where you live in the world. And we actually found out that things were a lot more similar than you might think. 
I should say that we did hear some quite shocking things in this interview, so I'm just including a trigger warning now for this episode, because there are references to sexual violence.

Sam Buckley: Hi everyone, I'm Sam and I brought Amber and Jacky together for this international episode. As Erin said, the more we talked, the more we saw parallels between life as a disabled person in Kenya and life as a disabled person in the UK, even if the differences at first seemed really stark.

I started, though, by getting Amber and Jacky to introduce themselves to each other as they met for the first time over Zoom.

Amber Okpa-Stother: Hello, my name is Amber and I am a Change Makers in Manchester and I also have a disability.

Jacky Waiharo: Hi, I'm Jacky Waiharo, I'm from Kenya, and I’m a teaching professional. I'm also an advocate for persons living with disabilities and a champion for sexual, reproductive and health rights among young women living with disabilities.

So, Kenya being a third world country, and still a developing country, having a disability in Kenya is a bit hard. Actually it's very hard. And as you know having a disability is very expensive, so in matters of inclusion in matters or lots of things to deal with inclusion, we have been left behind so much.

As persons with disabilities, we are really suffering when it comes to anything to do with accessing a service – anything – it's just hard, because you find that some places are disability unfriendly or some people are not trained on how to handle persons with disabilities, in both public and private sectors, so having a disability in Kenya is a bit hectic.

Also, with invisible disabilities, it's very hard because the society is quite judgmental when it comes to one having a disability. Like they see you as a curse or a taboo. And there are there also so many myths that come along with disabilities such as when, maybe to state one myth is that many believe is that when a person who is HIV positive has sex with a person who has a disability, they are going to be cured.
That is a weird type of mindset, and you find that so many persons with disabilities are disadvantaged, and also they are abused, here in Kenya.

Sam: Amber hearing that, but how does that compare to your experience in the UK?

Amber: Well, I feel very fortunate because there's probably more things out here in the UK to help you with your disability and I feel like I'm lucky and I feel sorry for Jacky because there's not much help you can actually get with a disability, so I just feel really, really lucky because there's support out there that I can get with my disability.

Jacky: I think you, yeah, you are very lucky and I'll maybe one day I’d like to come there and see how things are done there so that we can try and implement that in Kenya.

Now the problem is the people that we elect to represent persons with disabilities…maybe one, they are not people with disabilities or two, they are people with disabilities, but when they get up there, they now start milking us, they start using us in a very bad way, and that's why we have never maybe progressed in terms of disability inclusion. 

Amber: So how we campaign in the UK…well, I set up my own campaign on Change.org and then people signed it, so that’s how I've started to campaign that I've got over 200 signatures. And I think that that has helped me get my voice across through campaigning, by setting up my petition.

Sam: What's that a petition about, Amber?

Amber: About people with disability working. Yeah, it's a really, really good petition.

Sam: That's fantastic.

Amber: Yeah, and I got to speak to Andy Burnham the other day about my petition, and in February I'm going to go to Andy Burnham’s office, to enable more signatures.

Jacky: Wow, that's nice…! So here, we have start from the grassroots, from the community, because I think the community is making us more disabled than we are. So, first of all, I am a teacher, so I have good access to the community through the children. So first what I do, you know, I discovered that not many children have an idea of what a disability is, and being a child with disability, I had to be open with them and start explaining different types of disabilities to them, and how they should treat persons with disability. 

So that is one thing, and then we organize, like, school meetings, and during those school meetings, I'm also given a chance to address their parents and also tell them that if there's a child out there who has a disability, they should be enrolled in schools.

And yeah, I got an opportunity to deal with the area Minister of Parliament, we call them an MP, and the area they represent is called a constituency. So I got a chance to speak to him about the inclusion of children with disabilities in learning in the schools and the how they can make the environment friendly for these kids, and he was willing to help me go along and achieve a certain goal.

And that was something good I got from him, and then we also advocate through social media by just posting more on disability awareness, telling people that people with disabilities also are humans, that they matter too. And so those are different ways in which we campaign in Kenya… and also attending training on disabilities and being a role model as a person with disability, showing them that even a person with disability can be independent in life.

So if there’s a person out there with or a child who is disabled, then they should take the first action of inclusion, which is to take the child to school so that in future they can be independent. Yeah, that’s hard.

Sam: I'm just thinking about what you said about education, Jacky. How do you think the experience of education compares in Kenya and the UK?

Amber: Well, I’d say being educated with a disability in England, I think it's…sometimes it can be varied depending on what school you go to, but I managed to get like a teaching assistant to help me in my classes, once my disability was diagnosed.

I think that is probably different experience to Kenya as, maybe with disability, people are not aware of it and how to help disability. So I think it's a bit of a different world for people with disabilities and the education system in Kenya, out there.

Jacky: We find that most learning institutions are not that friendly, and if they are, they are very few. And also, me being a teacher, we are not going to go to the training colleges. We are not trained on how to handle a child with a disability unless now you take the special needs education path, whereby you just major on special needs education and there you get to be trained on how to deal with these kids. So then the Kenyan education system is really not that flexible when it comes to disability matters.

You find that these kids will not be involved in school because, they feel, like, abandoned because the schools are not friendly. There are no ramps, there are no disability toilets. So the parents will not involve these children, in fear that the child is not in a comfortable environment.

Also, the curriculum is not set in a way to fit the needs of a person with disabilities. Like, you find that the exams, some are not set in a way that the child that disability is going to do it in a way without any assistance. So these are some of the challenges we are facing in the educational sector of Kenya.

Sam: And thinking about what Amber said about campaigning for better access to employment. That's the sort of major issue that we run into here in the UK is that there can be a lot of barriers between disabled people, or people with disabilities and entering the world of work. What made you decide to do the petition, Amber?

Amber: It’s so more people with disabilities have the chance to work because not many people with a disability work. Like, to make the change.

Sam: Jacky, hearing that, what are your thoughts?

Jacky: I'm employed by the public sector - by the government. Before I was got employed by the government, after I completed my teaching profession in my college, I stayed for six years without employment.

So first you have to be employed by the private sector; but now when you go to ask for a job, they first see your disability before they see what your skills are, what you can offer to them. They are scared by your disability before knowing what you can give them. So in terms of employment opportunities here in Kenya, the government is really trying to accommodate persons with disabilities by giving them chances at employment. But we are not yet there.

You can find so many beggars in the streets that have disabilities, because you, the problem starts from down there. They are not, the schools are not friendly so they are not going to go to schools. And if they are not going to attend schools they are not going to have a future, they're not going to be employed because they don't have this…the knowledge or the skills or the papers to present to the government so that, or to the private sector so that they can be employed.

So it's a bit hectic. It's a bit hard learning that most persons with disabilities here are not educated, they have not attended schools so you find most of them found streets begging or they are just at home, they are just dependent on others so that they can survive.

Sam: Amber, how do you feel about that, hearing that? 

Amber: I feel a bit upset because people with disabilities shouldn't be treated that way, and I think that people need to be more aware of disabilities and they should be treated like other people in society and should be treated fairly. 

Jacky: Yeah, that's what we are working on. That's why we are campaigning, so that we can get a fair and inclusive society whereby everyone is included and everyone is offered equal opportunities.

Sam: So, with that in mind, we've talked about employment and we've talked about education. But what would you say would be the most important issue right now - what is the key thing that needs to change for people with disabilities around the world?

Amber: I think climate change needs to change…there’s not many people with a disability that really understand about climate change. And there's been a lot of bad news, and I think people need to be more educated about climate change and how they can get involved in climate change with a disability. Because it's very hard understanding about climate change.

Sam: And Jacky, is that something you see the impact of in Kenya, climate change

Jacky: Climate change… maybe to those that are in the rural areas whereby their main means of income is farming or agriculture. You find that it's going to affect [them] if there's no rain or anything to do with…yeah, it's going to affect their daily means of income because we find that most are going to the farm to harvest some crops and then sell these crops so that they can get some money to buy their… to push them on a daily basis. So if the climate is not favorable, it’s obviously going to affect them.

Sam: I mean a bit of a theme that's coming through is that we're a little bit more shielded here in the UK from some of those things like climate change. Like, we do see the impact, we hear about it on the news, but we're not quite at the stage where our livelihoods might be affected. What do you think about that, Amber?

Amber: I feel upset because I think that it just needs to be like, people should get educated in schools. So I think that it is quite worrying, with climate change, because, I just think people just need to be educated on it more.

Jacky: Yeah, yeah, that's true, people need more information on climate change and the causes of climate change, and the solutions to this, so that we can have an environment that is friendly or that is just. Yeah, and I'm so happy to learn that you people who are way ahead of us and that's somewhere I’d like us to be in the next like 5 to 10 years whereby that we are somewhere where we have achieved something and also so like, I know you people are very much included in every sector from employment education all the way to transport. 

In Kenya transport….the transport system is way out of…it’s just like, it's hectic. We find that people with disabilities are not, or cannot, travel on their own without maybe being stuck, especially if you don't have a personal car or vehicle you cannot go from one place to another because the fees are going to be up there, so I'm so happy to learn that the UK is way ahead of Kenya and I'm really going to try and implement what I've learned in this podcast. And also I'm going to campaign more and more to ensure that we are going to have an inclusive society in the future. 

Sam: Yeah, it's interesting what you're saying about transport, Jacky. Amber, would you say our transport system is completely accessible for people?

Amber: Sometimes it's not, because sometimes with the transport it's not very disability friendly, and especially for people with wheelchairs and things like that, there’s not much space for their wheelchairs to get on the transport, and sometimes your transport can be late and not on time.

It can be annoying because people with a disability need to be on time for things, need their routine but the transport system I think needs improving. Because sometimes the trains, I’ve been on trains and they're not very accessible 'cause their way too packed and there's no seats. And sometimes that can be overwhelming for people with a disability when it's really busy on the transport system. So I think our transport system needs improving in the UK.

Jacky: Like, I can give an example of the transport system in Kenya. We acquired a new train station, a new train, like a railway, it's called the standard gauge railway and now the train that came, we find the doors are so small, very tiny that I will check and, not go through. A certain woman was complaining she was traveling from one area to the other, but her wheelchair was not going through the door because the door is very slim.

Also, we find that our local…we use buses, and if a person that is deaf gets into a bus, and, uh, you know they are going somewhere and they cannot hear what the conductor…as in, the person who collects the money in the bus in Kenya, you cannot hear what the conductor is saying, so you may find that this person will pass their stop and will just go to another area, or maybe if they don't know that region. If they are strangers in that area, we find that they're going to be taken to another different region because they never heard the conductor calling out the stop where they were supposed to alight. 

Also, a person who is blind is not able to cross roads because the vehicles here in Kenya do not obey the traffic rules and regulation much.

Because of high rates of corruption, like, we find the traffic lights are not well used in Kenya. The road users do not comply with the traffic rules and thus we find that a person who is there be easily knocked down. 

Also you find that the drivers have not learned, so they cannot see a white cane, and be able to say this person is blind. So they don't know much information about a person living with disability, ostly a person who is blind. Because you see this person maybe has glasses on, so you cannot tell what kind of disability they have.
So you find that this person, the driver is going like to assume ‘this person is seeing me,’ and so if the person sees the vehicle coming fast, they're going to run. But remember this person is blind, so they end up being knocked down and that’s something that is dangerous and brutal. 

Sam: So, so far we've heard that things are quite different. We have quite different lives. But what would you both say is kind of one thing, one experience that you both have in common?

Amber: I think that my transport system is quite similar, because, I think that people on transport system in the UK are not very aware of people with disabilities and I think there needs to be more of a campaign about transport. It really needs to happen because it's very hard for people to get around with a disability.

Jacky: That's nice, I hope we achieve our goals. But I think you guys are way ahead of us when it comes to the transport system, Amber. In Kenya it’s pathetic, it's really pathetic, But OK, I hope one day we are going to achieve this.

Amber: I agree with what Jacky is saying, that we probably have got a bit more… more way ahead than Kenya, but and it needs improving a little bit 'cause it's not as perfect as it should be.

Jacky: I think that's one thing I’d love to maybe experience, one day, that we are going to achieve that inclusion.

Amber: One day, it would be quite interesting, to see what the different ways are over there.  

Jacky: And I hope that one day when you come over here, things will be better than they are.

Amber: Yeah!

Sam: That's lovely, Both, thanks so much and I suppose I'll end by us saying our goodbyes so well, thank you both. Thank you so much.

Jacky: Goodbye, thank you for having me Samuel. Thank you Amber, for meeting up. I will continue emailing and we’ll keep in touch.

Amber: Yeah, and so goodbye from me. It's been nice meeting you Jacky and and it's nice to compare different worlds. Thank you Sam for setting this up and I hope you both have a nice day. 

Jacky: Bye, thank you Sam!

Sam: Bye, thank you both! Thanks so much.

Erin: You know it was really great to get Jacky and Amber on a call together and hearing them compare notes you know, this is the power of the Internet and working from home these days. And if there's one thing that I've taken away from this episode, it's that when we campaign on disability rights so we cannot do it in isolation, 'cause, you know, we're often fighting for the same fundamental human rights, employment, education, transport and just being included in society. 

So the Global Disability Summit is coming up in February and this is a time where, you know leaders are getting together to make more commitments around disability inclusion. So I think this is something that you know they really need to keep in mind. We cannot do things in silos. We need to work together to achieve inclusion on a global level, and I think as we heard in this episode, You know, some people might think that rights are better in one country than another, and it seems like you know the same barriers really do crop up with things like transport and employment, but just in different ways.

So just want to say thanks again to Sam, Jacky, and Amber for making that conversation happen. You know, sharing what they've been up to with their campaigning. Before we go, I just wanted to mention that Change Makers is a national Leonard Cheshire project, so I just wanted to briefly mention the organisations who make it possible.

So it's supported by the Act for Change Fund, which is a £3.6 million partnership between Paul Hamlyn Foundation and Esmee Fairbairn Foundation for organisations supporting young people working for change. The Fund provides resources for young people to challenge social injustice, find ways of overcoming inequality and give voices to the issues that they're experiencing. And the Act for Change Fund is a joint initiative between the Paul Hamlyn Foundation and Esmee Fairbairn Foundation working in partnership with the National Lottery community and both foundations are acting as match funders and are awarding grants on behalf of the #IWill fund.

The #IWill fund is made possible thanks to a £50 million joint investment from the National Lottery Community fund and the Department for Digital Culture, Media and Sport, to support young people to access high quality social action opportunities.
The Paul Hamlyn Foundation and the Esmee Fairbairn Foundation are acting as a match funder and awarding grants on behalf of the #IWill fund and you know you can find way more information about the Change Makers program and also the 2030 and Counting citizen youth reporting programme all on the Leonard Cheshire website, so I will pop links to all of those websites in the show notes on our Simplecast site, in case you want to check them out. 

We'd love to know what you thought of the episode, so please email us at disabilitydownload@leonardcheshire.org or get in touch with us on Twitter or Instagram @Leonard Cheshire and please do remember to like, share and subscribe to the podcast as well. And you know if you've got an idea for a guest or a topic you know, get on social, tag them, tag us and let us know.

Thanks so much for tuning in everyone. Stay safe. Until next time I'm Erin and this has been The Disability Download.