Jane Nyawira Miano: "I envisage a UN Convention that gives us a voice in decision making and human rights - a unique instrument for unique problems"

WEBVTT

00:00:00.641 --> 00:00:01.002
Welcome.

00:00:01.002 --> 00:00:05.232
This is Ilana Landsberg-Lewis, your host for the Wisdom at Work podcast.

00:00:05.232 --> 00:00:08.089
Elder Women, older Women and Grandmothers on the Move.

00:00:08.089 --> 00:00:12.150
What follows is a special and exciting 10-part series.

00:00:12.150 --> 00:00:18.172
Have you ever thought about how human rights plays an essential and meaningful role in our older age?

00:00:18.172 --> 00:00:19.824
Well, you're in the right place.

00:00:19.824 --> 00:00:29.050
You're listening to Age with Rights and Dignity 10 interviews in which we will hear from older and younger advocates from different corners of the world.

00:00:29.050 --> 00:00:46.473
These committed champions and advocates will share with us why they care about the rights of older persons and what they are doing to help bring a new United Nations Convention on the Rights of Older Persons into being for you and for me, no matter how old we are.

00:00:46.473 --> 00:00:49.607
Now Join the movement and raise your voice.

00:00:49.607 --> 00:01:08.882
Go to the Age Noble Human Rights Day 2024 blog to find out more that is, a-g-e-k-n-o-w-b-l-e dot com and sign the global petition for the UN Convention on the Rights of Older Persons.

00:01:08.882 --> 00:01:23.569
I'm also excited to introduce you to two wonderful guest interviewers, younger women who are committed to these issues and will be joining me in this series to interview some of our esteemed guests Faith Young and Kira Goenis.

00:01:23.569 --> 00:01:24.951
Thank you for joining us.

00:01:24.951 --> 00:01:39.010
Enjoy this special initiative, and my thanks to Margaret Young, the founder of Age Noble, for bringing this opportunity to us to hear from these important guests who promote the human rights and the dignity of older persons the world over.

00:01:39.010 --> 00:01:43.704
So today I have the great pleasure of speaking with Jane Nyerawada Miyano.

00:01:44.346 --> 00:01:54.165
At age 75, jane is a community volunteer leader and resource mobilizer for assistive products for the most vulnerable persons with disabilities and older persons.

00:01:54.165 --> 00:02:00.486
Jane's lifelong disability started as a baby, when she suffered the effects of polio at eight months of age.

00:02:00.486 --> 00:02:07.429
Throughout her childhood, youth and adulthood, jane experienced firsthand the challenges of living with a progressive disability.

00:02:07.429 --> 00:02:15.372
She also saw the inequities suffered when one could not access support because of systematic inequalities and biased societal attitudes.

00:02:15.372 --> 00:02:24.893
This is why Jane started the organization Focus of Disabled Persons in Nairobi, kenya, in 2010, after retiring from the workforce.

00:02:24.893 --> 00:02:29.128
It's an organization where half of its members are age 60 and above.

00:02:29.991 --> 00:02:42.830
As founder coordinator of this community-based organization, jane raises awareness amongst decision makers and ensures people with disabilities of all ages can access any aids and assistive devices they need.

00:02:42.830 --> 00:02:53.322
In addition to her national advocacy and support work, jane actively advocates globally and at the World Health Organization and UN Division of Economics and Social Development.

00:02:53.322 --> 00:03:16.552
She's made many contributions in many UN and international arenas, amongst them contributing to the WHO wheelchair provision guidelines in Geneva, a speaker at the Global Assistive Technology User Network Launch in Asia-Pacific regions, and she is the recipient of an Honored with the Head of State Commendation Award for Distinguished Service in the Republic of Kenya.

00:03:16.552 --> 00:03:19.748
Welcome, jane, it's a delight to have you with us.

00:03:20.180 --> 00:03:22.810
I'm glad to be here with you, Irana.

00:03:23.060 --> 00:03:23.882
Thank you, jane.

00:03:23.882 --> 00:03:27.771
There's so much to talk about and so much to hear about from you.

00:03:27.771 --> 00:03:40.496
I want to ask you what has inspired you to do the important work that you do around the rights of older persons, the right to accessibility for older persons living with disabilities?

00:03:40.496 --> 00:03:46.604
What has led you to this advocacy and this important work that you're doing and growing in the?

00:03:46.864 --> 00:04:28.288
village, experiencing discrimination in every angle, because in the village there were only two girls who suffered polio at that time, and so you find yourself not being able to play like others, and if it was not for my mom, who was actually a wise woman, she left us in 2020.

00:04:28.288 --> 00:04:34.812
But she is the one who encouraged me to play along with the others.

00:04:34.812 --> 00:04:42.492
She did not shut me in, and so I think my faculties were able to develop us like they are at Siegfried.

00:04:42.492 --> 00:05:17.141
And then, at eight years, she rehabilitated me at home using homemade operators, because she just got three poles two at each end and one in the middle and there she told me to walk throughout the day and my younger sister is the one who was to check on me, supervise and after some time I was able to stand, and I was very excited to stand on my own, but I couldn't walk.

00:05:17.141 --> 00:05:23.153
Then she later cut an ordinary stick, dried it up and brought it to me.

00:05:23.153 --> 00:05:25.708
This is the one you will be using to walk.

00:05:26.581 --> 00:05:44.793
And, of course, I was very much willing, very much excited to walk like the other children, although not running, and that is how I was able to join the other children to school at age nine, because that was in 1959.

00:05:44.793 --> 00:05:49.232
And because it was during the colonial villages.

00:05:49.232 --> 00:05:57.851
After five years we moved to our farms and she had to carry me every morning, get me to the spools.

00:05:57.851 --> 00:06:07.012
So within that time then I realized unless you have a very, very supportive parent, then you can't make it.

00:06:07.012 --> 00:06:29.384
Remember, when I did my standard eight, the KCPE in Kenya Kenya Certificate of Primary Education there was nothing that indicated that I'm disabled and so I was called into a regular school and I joined in.

00:06:29.384 --> 00:06:31.708
That was for four years.

00:06:32.439 --> 00:06:39.014
And of course, as I went home, my mother was to meet me and head on the way and carry me.

00:06:39.014 --> 00:06:43.050
But I was going to say, even in school, things were not easy.

00:06:43.050 --> 00:06:45.788
Immediately I got to Form 1.

00:06:45.788 --> 00:06:54.714
I remember one young lady shouting oh, who told Ms McKee that this is a school for the crippled.

00:06:54.714 --> 00:06:57.668
I almost got shocked.

00:06:57.668 --> 00:07:00.709
I wondered whether I was actually in the right place.

00:07:00.709 --> 00:07:04.788
So there we were, and some girls even encouraged me.

00:07:04.788 --> 00:07:05.687
So it was a lot of effort to.

00:07:05.687 --> 00:07:06.935
So there we were, and some girls even encouraged me.

00:07:06.935 --> 00:07:08.442
So it was a lot of effort to be there.

00:07:09.103 --> 00:07:16.562
And when I came to Nairobi to look for a job, my family had a domestic problem.

00:07:16.562 --> 00:07:36.543
The parents did not get along very well and it is almost like so in every home in Africa where you have a child with a disability, because there is a blame game for the parents, wondering who is at fault and what I say.

00:07:36.543 --> 00:07:40.232
It may not be the only reason why they parted.

00:07:40.232 --> 00:07:50.024
They parted and my mother, by the time they parted, had already lost one eye and later on she.

00:07:50.024 --> 00:08:09.560
People think it was not difficult to get a job but it was Okay.

00:08:09.560 --> 00:08:13.449
We weren't very many who had some basic education.

00:08:14.271 --> 00:08:32.114
It took time, but later I got a job with Kenya Post and Telecommunication and worked there for 24 and a half years and I had to leave because they were doing some kind of reorganization.

00:08:32.114 --> 00:08:42.230
So I had to leave and when I came back my mother was just also joining me, now having lost her son, and I stayed with her.

00:08:42.230 --> 00:08:47.344
I did some artwork, big artwork for survival.

00:08:47.344 --> 00:08:50.982
But as you age, the strength is no longer there.

00:08:50.982 --> 00:08:56.904
You don't do as much and you don't get the social protection in Kenya.

00:08:56.904 --> 00:09:06.008
As long as you can get a small pension, no matter how small, you don't get social protection.

00:09:06.008 --> 00:09:15.611
Even if you get to 70, the mark is 70 plus, so it means I'm not getting any social protection.

00:09:15.611 --> 00:09:17.605
I cannot live alone.

00:09:17.605 --> 00:09:26.027
Now I have bought a small house which I completed, and that is where I'm now living in.

00:09:27.149 --> 00:09:28.451
It's a lot to appreciate.

00:09:28.451 --> 00:09:34.893
Jane, I think I understand where the perseverance, the resilience that you have comes from.

00:09:34.893 --> 00:09:38.902
It sounds like your mother was a real supporter.

00:09:39.042 --> 00:10:09.964
Yes, and I should have told you that when I started doing awareness, I started very aggressively advising the parents with the children with disabilities, directing them on where do you take your child for assessment, where do you take your child for medical intervention, because I realized early intervention is crucial.

00:10:09.964 --> 00:10:15.138
If my mom did not rehabilitate me by whatever means, then it means I would never have worked.

00:10:15.138 --> 00:10:25.274
Remember, there were no therapies, of course, there were no interventions, so I wasn't able to get the car repair.

00:10:25.274 --> 00:10:30.899
I had to go to a car repair shop until I got a job, so that I bought my stuff.

00:10:30.899 --> 00:10:38.874
And later on my friends, including the church, they helped me to buy a car.

00:10:39.922 --> 00:10:45.774
And the first promotion I got brought a little problem how do you promote her?

00:10:45.774 --> 00:10:51.533
And she's given half an hour to leave the office earlier than the others.

00:10:51.533 --> 00:11:03.594
And then after that I realized I was in big trouble, so I brought myself that tricycle to be able to compete with them.

00:11:03.594 --> 00:11:16.033
Although I joined as a telegraphist, I was really a telegraph superintendent because I was able to compete with them on the same basis.

00:11:16.033 --> 00:11:33.828
So when I realized we need to motivate each other, and especially older persons with disabilities, to reach ageist ideas, Absolutely, and I want to ask you more about this.

00:11:34.279 --> 00:11:55.451
I'm imagining, when I listen to you, jane, that your experience as a child, it sounds like, has deeply informed your understanding, not just your lived experience as you age, but you're actually able to understand what are the different challenges for people who are differently situated, different ages, different circumstances, some in the rural areas as opposed to urban areas.

00:11:55.451 --> 00:11:59.744
You know what is that relationship between aging and disability?

00:11:59.744 --> 00:12:03.427
What is the kind of advocacy that you see is necessary?

00:12:04.248 --> 00:12:31.153
You know, when I talk I realize it's awkward for me to talk without also my experience In Africa, a woman of my age who is not married and maybe you don't have children you are calling your own and maybe you don't have children you are calling your own is treated like you are not a full person in the society, right?

00:12:31.153 --> 00:12:39.761
And women with disabilities, even from a younger age, it seems like they shouldn't have a choice.

00:12:39.761 --> 00:12:42.769
The marriage in Africa is more communal.

00:12:42.769 --> 00:12:58.799
A community in Africa is more communal, a community so that even if a young man, it becomes a high task to be able to tell your parents this is the one I'll marry, despite having a disability.

00:12:58.799 --> 00:13:06.134
Many women with disabilities will have children, but not the fathers.

00:13:06.134 --> 00:13:09.490
The men don't want to be associated with them.

00:13:10.181 --> 00:13:23.965
I have formed some groups one for persons with disability that is the one I'm still focused on disabled persons but there is also another one called Vision for Persons with Disabilities.

00:13:23.965 --> 00:13:31.654
But there is also another one called Vision of Persons with Disabilities, which is mainly for parents with children with disabilities.

00:13:31.654 --> 00:13:45.633
And whenever you call a meeting, you are not going to get a man, you will get a lady solo, because it is a stigma that will burden from joining in.

00:13:45.633 --> 00:13:47.748
They don't want to be associated.

00:13:47.748 --> 00:13:52.851
So it becomes a woman's burden to bring up a child.

00:13:52.851 --> 00:14:08.211
In fact, when I was going to school, when my mother was carrying me, of course they had not patterned, they had not patented, but my father was wondering where will this girl get a job?

00:14:08.211 --> 00:14:09.772
In which office?

00:14:09.772 --> 00:14:16.937
And my mother would say, by the time she's done with the school, there will be some offices for them.

00:14:16.937 --> 00:14:26.893
That was a big dream or a vision, because it happened that then I got a job.

00:14:26.913 --> 00:14:33.029
But what I'm trying to say is that the stigmatization is key that is associated with disability.

00:14:33.029 --> 00:14:43.450
Life becomes quite difficult in the community and everywhere because even at a job with a disability there is discrimination.

00:14:43.450 --> 00:15:02.431
Yeah, because, like I said, I got a job and there was no lift on the first floor and I had to struggle to get there and sometimes the job was on second floor and again you had to try and get there.

00:15:02.431 --> 00:15:07.267
When the lift on the second floor is not working, you just can't say otherwise.

00:15:07.267 --> 00:15:22.511
I'm not very sure that they know that they are discriminating when they don't make the environment accessible, like even the transport.

00:15:22.511 --> 00:15:24.360
It's a bit unfortunate.

00:15:24.360 --> 00:15:28.244
I think they need to hear for the transport.

00:15:28.244 --> 00:15:29.225
It's a bit unfortunate.

00:15:29.225 --> 00:16:01.296
I think the link here for the transport by foreign women did not go to the interviews that they had done from the persons with disabilities, which I had done Because I told them we have a wheelchair at a bus stop you can stay for hours and it is not the fault of the public vehicle drivers, it is because the vehicle is not facilitated or there isn't a place to keep my wheelchair in a shot.

00:16:05.419 --> 00:16:09.019
So even if they were to help you to get to, how would you stay there?

00:16:09.019 --> 00:16:21.527
Yeah, and when you get to the city, and for the older women, if there are no clear paths to walk, how do they go to where they wanted to go?

00:16:21.527 --> 00:16:33.975
And there are no passages for wheelchair Right, are no passages for wheelchair Right, so it becomes quite difficult, not only for women but for all who are aging.

00:16:34.558 --> 00:16:37.227
Yeah, there's so much that's interesting here to unpack.

00:16:37.227 --> 00:16:47.344
I wonder if the stigma that you talk about that exists when there are children who are born with disabilities or illnesses that cause disabilities when they're young.

00:16:47.344 --> 00:16:58.721
Do you find that for older persons as they're aging and different kinds of disabilities emerge or happen to us as we age, in terms of the discrimination and the stigma?

00:16:58.721 --> 00:17:04.451
I mean, what is the advocacy that is needed for older people as they age and are living with disabilities?

00:17:04.971 --> 00:17:06.894
I'll tell you what it means to us.

00:17:06.894 --> 00:17:27.453
One of the things that I have also experienced as I do the advocacy on accessibility is even the donors for assistive devices would rather assist first a younger person and not another one.

00:17:27.453 --> 00:17:42.910
And that is so practical that anybody who is 70, they want to say that one will get a wheelchair and die quickly, but the other, younger one will stay longer.

00:17:42.910 --> 00:17:54.516
And then, as if that is not enough, the domestication of the UN Convention on the Rights of Persons with Disabilities.

00:17:54.516 --> 00:18:08.834
When it is domesticated in many countries of Africa or developing countries, it doesn't explicitly look at the persons with disabilities who are aging.

00:18:08.834 --> 00:18:10.265
Why do I say so?

00:18:10.265 --> 00:18:23.409
If an older person wants subsidy for a wheelchair or a white chain or eyeglasses or something like that, they cannot get it through the national council.

00:18:23.409 --> 00:18:28.811
Why they will be required to register first before they can benefit.

00:18:28.811 --> 00:18:31.429
And what time is there to register?

00:18:31.429 --> 00:18:32.786
I wasn't registered.

00:18:32.786 --> 00:18:43.304
If I had not gotten polio or gotten disabled at an early age, then I would not be having my certificate of disability registration.

00:18:43.304 --> 00:18:44.944
I would not be having my certificate of disability registration.

00:18:44.944 --> 00:18:59.217
But if a person of my age wants a wheelchair, they cannot benefit Until then they are fastly distant as persons with disabilities and it is becoming very serious in Iran.

00:19:10.160 --> 00:19:12.946
Somebody is in the hospital, has just been discharged and the doctor says get a wheelchair so that you can take this lady home.

00:19:12.946 --> 00:19:17.136
And they are struggling to pay for the hospital bills because we don't have coverage.

00:19:17.136 --> 00:19:21.892
It is just beginning in Kenya and we are praying that it works.

00:19:21.892 --> 00:19:33.215
So, as things are now, it will be very difficult for those people to buy a wheelchair and pay the hospital bill without doing some fundraising.

00:19:33.215 --> 00:19:46.673
I'm talking with the passion because they think let's call they call me Auntie Jane, so if they call me and I can't get one, then it becomes very difficult.

00:19:46.673 --> 00:20:02.971
But this immediate thing where that person gets a wheelchair to go home, or they want a wheelchair to be taking the older person outside to have some sunshine, and they can't get help.

00:20:04.115 --> 00:20:14.900
So although I'm an advocate of appropriate assistive device, then you find breaking the rule.

00:20:14.900 --> 00:20:19.548
You have this one thing at least to get home.

00:20:19.548 --> 00:20:25.346
So what I'm trying to say is that things don't get better.

00:20:25.346 --> 00:20:27.076
You are always looked at.

00:20:27.076 --> 00:20:32.785
You have had the older people, especially women, being told to leave.

00:20:32.785 --> 00:20:34.627
Which doctors?

00:20:34.627 --> 00:20:35.869
Why?

00:20:35.869 --> 00:20:40.240
Because of ageism, ageist ideas.

00:20:40.240 --> 00:20:43.083
So it is threatening.

00:20:43.083 --> 00:20:45.695
It's like you lose your value as you age.

00:20:45.695 --> 00:20:55.182
It's like you lose your value as you age and, of course, you also lose a number of friends if you don't stay up like this.

00:20:56.542 --> 00:21:23.869
I mean it's very painful to hear because we're not just telling stories, these are real people's lives that have value and worth, and so you think about people being isolated and discriminated against, but also just not being thought of, not being counted, you know so that if you don't have an Auntie Jane to call, you know then, and if you don't, we may not have gotten to that.

00:21:23.910 --> 00:21:31.061
But the geriatric If that education was done, there can be a lot of intervention.

00:21:31.061 --> 00:21:36.907
One time I got admitted in hospital.

00:21:36.907 --> 00:21:47.957
I could have afforded a private room, but I said I'm going to stay in the room where the others were and the mistreatment made me shudder.

00:21:47.957 --> 00:21:58.740
I had decided I was going to write a big complaint letter and leave it to them, but I said I'm going to see the doctor.

00:21:58.740 --> 00:22:01.442
I saw the doctor before I left.

00:22:02.276 --> 00:22:02.375
And.

00:22:02.436 --> 00:22:03.160
I told them.

00:22:03.160 --> 00:22:17.488
I don't see why another person should ask for a pen to help herself and then, when she does it on the bed, everything is really poor.

00:22:17.488 --> 00:22:30.349
So I felt very bad and so I get motivated to really talk about those treatments that are there.

00:22:30.349 --> 00:22:33.484
I have heard my story like I wanted to go.

00:22:33.484 --> 00:22:45.659
I was to go to Geneva for a WHO meeting and there somebody says, unless you are accompanied by a medical doctor, you cannot go.

00:22:45.659 --> 00:22:47.345
You cannot use our ERM.

00:22:47.345 --> 00:22:49.583
Then I said, no, I will not.

00:22:49.583 --> 00:22:53.385
I'm going to a meeting, not for treatment.

00:22:53.385 --> 00:22:56.384
So I argued and argued.

00:22:56.384 --> 00:23:06.628
I was almost late for the meeting because I said, no, I would rather stop going than hear what you are saying.

00:23:06.628 --> 00:23:09.002
It is not good at all.

00:23:09.002 --> 00:23:19.098
Why is it that I had been going before, but when I turned 75, I wasn't 75, but how many years was I?

00:23:19.098 --> 00:23:20.584
2022.

00:23:20.584 --> 00:23:23.682
They said, you know.

00:23:24.236 --> 00:23:28.141
And then I told the WHO no, no, no, I'm not coming.

00:23:28.141 --> 00:23:29.768
And that's exactly me.

00:23:29.768 --> 00:23:31.615
Afraid of no, no, no, I'm not coming.

00:23:31.615 --> 00:23:33.038
And that's exactly me.

00:23:33.038 --> 00:23:34.125
Afraid of them, more afraid than them.

00:23:34.125 --> 00:23:35.273
I was happy they did it and I went.

00:23:35.273 --> 00:23:39.085
We feel like discrimination is over.

00:23:39.085 --> 00:23:42.904
I want to get a small loan to do something.

00:23:42.904 --> 00:23:52.901
And the bank says as long as you are 70 years, unless you come with a younger person, you can't come and get your own.

00:23:52.901 --> 00:23:55.182
They think you cannot.

00:23:55.182 --> 00:23:59.684
They think something has gone wrong with your head.

00:23:59.826 --> 00:24:08.508
Okay, I'm eager to ask you this why is it so important to have a UN Convention on the Rights of Older Persons?

00:24:08.508 --> 00:24:18.439
It so important to have a UN Convention on the Rights of Older Persons, and how do you see that it will make a difference in the lives of older persons at the community level, at the national level, in Kenya or any other country?

00:24:18.799 --> 00:24:52.944
Wow, Having looked at the other institutes and so much so this one for CRPD, I've always said that Article 25B of the UN CRPV mentions older people, kind of saying we will all be entitled to benefit from the assistive devices and all the services that should be given to the persons with disabilities, including the older women, the children.

00:24:52.944 --> 00:25:08.942
But when it comes to the ground I've already told you the story of what will happen we will require that that older person register first as a person with a disability in order to benefit.

00:25:08.942 --> 00:25:20.978
Well, it is good for the data, so that they will know how many people do we have in the country with disability and who particularly benefited.

00:25:20.978 --> 00:25:28.205
That is okay, but it also leaves the older people out, and in a big way.

00:25:28.205 --> 00:25:51.949
So I envisage a UN Convention on the Rights of Older People will be another instrument that is looking at the implementation of the domestic instruments and also involving giving us a voice in decision-making and saying how best it can serve us.

00:25:51.949 --> 00:26:00.886
If that was to be done, we can have dignified lives and productive, because we will also be able to insist.

00:26:00.886 --> 00:26:06.998
I need an appropriate assistive device for me, as it were.

00:26:06.998 --> 00:26:15.241
I have told you they get assistive devices from the donors mostly and when you are given.

00:26:15.241 --> 00:26:20.096
So I look forward and I think it will be wonderful.

00:26:20.096 --> 00:26:23.281
It will give us human rights.

00:26:24.258 --> 00:26:30.717
On transportation accessibility how do I get?

00:26:30.717 --> 00:26:41.048
Even if there was a dispensary near me and I cannot board the public means, how do I get there?

00:26:41.048 --> 00:26:50.321
When they talk of digital services on health, do I know how to operate?

00:26:50.321 --> 00:26:54.624
Has somebody taught me?

00:26:54.624 --> 00:27:04.000
Education for the older people here is like a big story, especially the basic.

00:27:04.000 --> 00:27:10.284
There is adult education, but it's not very much highlighted.

00:27:10.284 --> 00:27:35.845
I know my mother had joined and she was able to do her shop, to run her shop, because she had already learned something that is lacking, so that if another person would be having, they have experienced a lot of forgery from the younger people, the sons and daughters and even the grandchildren, because they lack education.

00:27:35.845 --> 00:27:43.058
So I look at it like it would give us an opening to the other rights.

00:27:43.058 --> 00:27:44.362
Human rights yeah, all of them yes.

00:27:44.362 --> 00:27:52.521
To the other rights human rights yeah, yeah, all of them yes.

00:27:53.423 --> 00:28:03.212
And I think that's such a powerful difference and again, it would make the government have a document for guidance.

00:28:03.212 --> 00:28:09.801
Yeah, how do they measure their success, whether they are treating as well?

00:28:09.801 --> 00:28:25.529
It is not that there are no documents at all in countries domesticated, but you realize they don't have a guideline to really implement.

00:28:25.529 --> 00:28:33.961
Otherwise they could be there to really implement, otherwise they could be there, like our constitution mentioned quite much of other people.

00:28:33.961 --> 00:28:46.924
But the implementations is a big issue and when they do the social protection, it's mainly in cash transfers.

00:28:46.924 --> 00:29:02.587
The other areas are yet and the cash transfers I have seen somewhere else, maybe you will note, with the interview with someone from the government.

00:29:02.587 --> 00:29:20.105
My argument is the 2,000 cannot buy you food, buy you medicine, but as you age you are likely to suffer some conditions and non-communicable diseases.

00:29:20.105 --> 00:29:38.259
How do you buy medicine, buy food, accommodate yourself, and even if you have a small house or a house, let me call it house how do you pay the bills?

00:29:38.259 --> 00:29:41.207
Yes, life is really bad, you see, for them.

00:29:44.646 --> 00:29:44.788
Yes.

00:29:50.117 --> 00:29:53.506
And it's a way to hold the government accountable.

00:29:53.506 --> 00:29:54.186
Yes, it is.

00:29:54.186 --> 00:29:59.957
You hold the government accountable with that, and especially when it is coming from UN.

00:29:59.957 --> 00:30:04.079
When it is coming from UN, then it is abiding document.

00:30:04.079 --> 00:30:08.542
Yes, like they do in the UNCRPD.

00:30:08.542 --> 00:30:12.986
Yes, yeah, every yeah.

00:30:12.986 --> 00:30:20.832
You go there and you are able to argue what have you done, what have we done, and you compare.

00:30:20.832 --> 00:30:28.595
Then you can come out with something, some development, but without the convention.

00:30:28.595 --> 00:30:41.345
Specifically for us, it's basically looking at the issues that are on hand when things become harder.

00:30:41.345 --> 00:30:58.310
We have unique, unique problems which need a unique document which can spotlight our issues significantly.

00:31:02.402 --> 00:31:03.144
Okay, so let's.

00:31:03.144 --> 00:31:06.202
I love that we should end there, but I want to ask you.

00:31:06.202 --> 00:31:11.743
I want to ask you because I know you're very busy campaigning for universal access to health care.

00:31:11.743 --> 00:31:23.095
So I want to leave you without giving you the opportunity to lift your voice around this issue, and I know what a huge impact it will have on older persons.

00:31:23.095 --> 00:31:26.865
So I want to make sure that we hear what you have to say about this.

00:31:27.974 --> 00:31:39.828
And remember I have told you, when they have a small pension, no matter how small, you cannot benefit from the social protection.

00:31:39.828 --> 00:32:08.929
And you realize, even those who are adequately pensioned, the people who have what they would call good enough not adequate but good enough would realize here, because of lack of employment, which could be the world over, no matter how old, what the parents are getting is the money that is sustaining the families.

00:32:08.929 --> 00:32:10.174
Getting is the money that is sustaining the families.

00:32:10.174 --> 00:32:20.422
Like, if the children have been educated to university level, higher education, and they cannot get a job, what happens?

00:32:20.422 --> 00:32:42.424
They are living on your pension because, unlike other places maybe, where the youth who have completed education they have education without money would be supported by the government, in the developing countries we are yet.

00:32:42.424 --> 00:32:54.617
And so the same parents with the ritual pension or with the pension that they are getting, then they support them and so they go out.

00:32:54.617 --> 00:32:57.787
They are students of living anyway.

00:32:57.787 --> 00:33:04.429
And then for some, like me, I don't get a big pension.

00:33:04.429 --> 00:33:14.901
And then when you come in, you also realize you have a mother to take care of and you are not working.

00:33:14.901 --> 00:33:19.724
You are no longer working and it becomes your responsibility.

00:33:19.724 --> 00:33:31.738
There are those older people who have also been left with their grandchildren, been left with the grandchildren.

00:33:31.738 --> 00:33:37.057
Like you remember, during the HIV so many families were left with their parents, so grandmas were left with the children.

00:33:37.057 --> 00:33:40.086
So what do you give them?

00:33:40.086 --> 00:33:41.991
$2,000 per month.

00:33:41.991 --> 00:33:45.584
What can they do with that?

00:33:45.584 --> 00:33:50.306
It's good, but little.

00:33:50.306 --> 00:34:03.907
And yet we cannot complain so much that it should be increased, because there are many more only a small part who are benefiting it.

00:34:03.907 --> 00:34:06.122
So the others are not.

00:34:06.122 --> 00:34:08.581
Many more are not.

00:34:08.581 --> 00:34:17.563
So you would rather the others also got something little before it can be increased.

00:34:17.563 --> 00:34:25.163
So the hospital bills becomes a matter of fundraising.

00:34:25.163 --> 00:34:39.445
There is a new system which we are yet to understand, changing from National Hospital Insurance and changing to Social Hospital Insurance Fund.

00:34:39.445 --> 00:34:54.449
It is yet to take place, but if it did, if it was to come and take care, especially on chronic diseases, most of them non-communicable, it would help a lot.

00:34:54.856 --> 00:35:03.670
The older person I want to say we are becoming burdensome to the families and we don't want to die very quickly.

00:35:03.670 --> 00:35:06.465
The older people here don't want to go to the homes.

00:35:06.465 --> 00:35:07.652
You know they want to stay with the children.

00:35:07.652 --> 00:35:12.422
You know they want to stay with the children, no matter how little they are getting.

00:35:12.422 --> 00:35:17.356
My mother had told me if I took her there, things would be very bad.

00:35:17.356 --> 00:35:20.460
She didn't want to go, so we had to stay with her.

00:35:20.460 --> 00:35:27.838
The only good thing is I have a sister, a younger sister, and her children, who are very lovely.

00:35:27.838 --> 00:35:29.123
They will remain.

00:35:29.123 --> 00:35:51.623
So if I was to engage a house, help or live in person with the little money that I get, you know and I'm no longer now my hands are not very strong now to continue making the bids when I have, if I get an order, I get some people to do it.

00:35:51.623 --> 00:36:00.623
Then I pay them something and get something from the work, but not physically doing it like I do.

00:36:00.623 --> 00:36:05.824
I don't know whether I have said anything you have.

00:36:06.224 --> 00:36:06.646
You have.

00:36:06.646 --> 00:36:09.081
I mean, it's well.

00:36:09.081 --> 00:36:10.164
Your voice is strong.

00:36:10.164 --> 00:36:16.262
Even while your hands are not as strong as they used to be, your voice is still strong.

00:36:16.262 --> 00:36:20.565
But you know, I hear what you're saying, jane.

00:36:20.565 --> 00:36:24.226
It's as we get older and as we age.

00:36:24.226 --> 00:36:26.362
You don't want to be a burden to the family.

00:36:26.362 --> 00:36:28.313
You really don't want to be a burden to the family.

00:36:28.195 --> 00:36:29.934
You really don't want to, but it doesn't matter.

00:36:29.934 --> 00:36:32.619
But like what I?

00:36:32.619 --> 00:36:54.619
Maybe I should have told you just a little that when the family separated I had to help my mother educate my siblings All through and unfortunate things happening thereafter my brother was my wife and then I had to bring up the daughters.

00:36:54.619 --> 00:37:04.199
So I'm not complaining myself, but I did a lot of work to earn respect.

00:37:04.199 --> 00:37:05.563
Respect, yes.

00:37:05.563 --> 00:37:11.838
That is why maybe I'm looked after and I'm able to stay with a sound mind about other things.

00:37:11.838 --> 00:37:14.643
But these days I really have.

00:37:15.394 --> 00:37:19.284
I used to board my vehicle on my own with crutches.

00:37:19.284 --> 00:37:37.777
Both places Go to get children from the slums around here, take them to Pisa, I suppose, look for schools, look for sponsors they're still coming, so they still call.

00:37:37.777 --> 00:37:40.679
What I do is I don't go much.

00:37:40.679 --> 00:37:54.949
They call and when they get some wheelchairs and there are some people who need them older people instead of me going, their people will come for them.

00:37:54.949 --> 00:38:15.226
As long as we can keep a record, I have somewhere where I keep them in a certain faith-based institution and there I'll keep them and send somebody there Right On record and they take a wheelchair and they go.

00:38:15.226 --> 00:38:32.686
That's why you don't see me presenting the wheelchairs and the way I was presenting, I was feeling like these people may not want to appear somewhere and I may not get them to give a consent for their appearance.

00:38:32.686 --> 00:38:35.358
Yes, yes, did you know?

00:38:35.358 --> 00:38:47.239
I went to Geneva in 2022, the meeting I'm talking about, I had gone for the wheelchair guidelines provision, a technical meeting.

00:38:47.239 --> 00:38:49.340
That's the one I was trying to do.

00:38:49.382 --> 00:38:50.264
Oh, that was the meeting.

00:38:51.034 --> 00:38:55.804
Yeah, because I had done all throughout almost the whole year.

00:38:55.804 --> 00:39:16.320
I was in the guidelines development group for a whole year, then we went to Geneva now for the check-in for meetings and now there is a document for the wheelchair provision which is being implemented all over, and I feel good.

00:39:16.934 --> 00:39:21.545
Yes, you should, and I'm very grateful for everything I just recently.

00:39:23.199 --> 00:39:25.847
I'm going to speak to a group.

00:39:25.847 --> 00:39:29.077
They will be having a walk to raise some funds for a therapy for speak to a group.

00:39:29.077 --> 00:39:35.661
They will be having a walk to raise some funds for a therapy for children with disabilities and they won't be able to be a speaker.

00:39:35.661 --> 00:39:36.885
They are less speakers.

00:39:36.885 --> 00:39:48.088
I'm telling them I don't have much money that I can talk, so as long as I can get there, I will go and encourage them.

00:39:48.088 --> 00:39:50.041
Things are going on.

00:39:50.041 --> 00:39:59.719
My hands are not strong, but even my legs they were struggling to do it.

00:40:01.036 --> 00:40:05.798
You have an extraordinary life of adapting and finding a way through, jane.

00:40:05.798 --> 00:40:10.804
If one thing doesn't work, you clearly try another until you make it work.

00:40:10.804 --> 00:40:15.362
This is very clear from your story and I wonder, so let's end this way.

00:40:15.362 --> 00:40:40.021
If there are other advocates or older persons living with disabilities and they were struggling as you have had to struggle and as you've seen others struggle, and they don't know anything about all of this advocacy to get a UN convention on the rights of older persons, they don't know anything about it.

00:40:40.021 --> 00:40:42.762
What should we say to them?

00:40:42.762 --> 00:40:58.018
What would you say to them, to older people who are having their own struggles and dealing with ageism and dealing with lack of accessibility perhaps they're living with disabilities what would you say to them?

00:40:58.018 --> 00:41:05.081
When we talk to them about working towards a convention, what message would you send to them?

00:41:06.155 --> 00:41:08.539
What message would you send to them?

00:41:08.539 --> 00:41:11.282
I would tell them the UN Convention.

00:41:11.282 --> 00:41:15.208
I think one of the things we should do is create awareness.

00:41:15.208 --> 00:41:16.449
What is it?

00:41:16.449 --> 00:41:20.338
What is that convention?

00:41:20.338 --> 00:41:22.565
Awareness raising is key.

00:41:22.565 --> 00:41:48.168
When I make the meetings, the ones that I used to either tell people to donate and I don't want them to give me money what I do is, if there is a child that needs a wheelchair, that child will be sent to the association for Physical Disease, kenya.

00:41:48.168 --> 00:41:51.797
What is it that is required?

00:41:51.797 --> 00:41:54.565
It is assessed, the intent.

00:41:54.565 --> 00:42:00.045
Then this donor will pay, right.

00:42:00.045 --> 00:42:06.201
So because I don't have money on me, right?

00:42:06.201 --> 00:42:08.958
So what I'm saying?

00:42:08.958 --> 00:42:12.387
I think the issue is awareness.

00:42:12.387 --> 00:42:14.820
What is the convention?

00:42:14.820 --> 00:42:16.617
That one?

00:42:16.617 --> 00:42:17.340
They don't know.

00:42:18.414 --> 00:42:32.429
And I started a group for older people, but there is only one man and nine women, including me, and they meet outside.

00:42:32.429 --> 00:42:32.648
Here.

00:42:32.648 --> 00:42:56.028
I have a place where they can meet at some seats and I don't charge them the value, but because the seats are not mine, they are for another group Then she will sit in the chair.

00:42:56.028 --> 00:43:13.376
So when they started getting together, then I have the opportunity to tell them why they should fight for their rights, and I'll tell you when they come here.

00:43:13.376 --> 00:43:23.163
We don't want to stay here all time, make some tea and play together when there is one with a bad thing.

00:43:23.163 --> 00:43:29.016
Like you, put three together for January, february, march, then they can do in March.

00:43:29.016 --> 00:43:36.320
Like you put three together for January, february, march, then they can do March together, a birthday for all of them.

00:43:36.320 --> 00:43:45.322
And they buy the cake and they cook some food and some meat and we eat.

00:43:45.322 --> 00:43:53.021
So what I'm saying women can fight and men can fight for their rights.

00:43:54.646 --> 00:44:03.396
What surprises me is that older man says the others tell him they are not old.

00:44:03.396 --> 00:44:07.003
Is that ageist or what is it?

00:44:07.003 --> 00:44:08.791
They are not old.

00:44:08.791 --> 00:44:09.130
They are not old.

00:44:09.130 --> 00:44:09.369
Is that ageist or what is it?

00:44:09.369 --> 00:44:09.469
They are not old.

00:44:09.469 --> 00:44:12.143
They are not old, they are not young.

00:44:12.143 --> 00:44:15.965
We call it golden light aging.

00:44:15.965 --> 00:44:18.661
Golden light aging.

00:44:18.661 --> 00:44:19.623
I love that.

00:44:21.038 --> 00:44:23.525
When they come together, they have a lot.

00:44:23.525 --> 00:44:26.824
We are given assignments.

00:44:26.824 --> 00:44:34.969
You are going to find out about the health system status.

00:44:34.969 --> 00:44:37.516
Some of them are stored.

00:44:37.516 --> 00:44:40.480
That is your assignment.

00:44:40.480 --> 00:44:51.360
Come and tell us, come and teach all of us how to use some digital skills, and they come and do it.

00:44:51.360 --> 00:44:57.585
Another one is to teach us how to exercise when we get there.

00:44:57.585 --> 00:45:06.922
Yeah, there is prayer, there is Bible reading, there is some exercises.

00:45:08.505 --> 00:45:16.545
Before you start the meeting and it's not only a meeting you do what you call table banking.

00:45:16.545 --> 00:45:21.643
Table banking, the amount is not the matter.

00:45:21.643 --> 00:45:24.543
We are not meeting here because of money.

00:45:24.543 --> 00:45:49.590
Just recently I was intervening for another lady who had lived in the USA for a long time and kind of she had lost the friends she left in Kenya and on this side she felt very, very lonely and I had to start looking for who is staying near her.

00:45:49.590 --> 00:45:54.885
What is it that they can be doing together?

00:45:54.885 --> 00:46:18.762
And because money is not an issue to her, she was not interested in the bubble, but she was interested in having a group to meet and I'm now glad she's meeting with other friends, in fact in two churches.

00:46:18.762 --> 00:46:31.681
Now, If your problem is isolation and they're not in money, you don't have to come where they are giving a table bouncing of $20,000.

00:46:31.681 --> 00:46:43.637
You can read your Bible, you can do the other things, exercises and she is feeling very good.

00:46:43.637 --> 00:46:54.260
She has joined what they call BSF Bible study, kindf Bible study, kind of Bible study, fellowship and she's doing it.

00:46:54.260 --> 00:47:02.164
And now I'm so sure that she will no longer stay and tell me that she's doing nothing Right.

00:47:03.376 --> 00:47:14.641
Of course I have another one who is also not able to do anything because of rheumatism, arthritis, and that one is really.

00:47:14.641 --> 00:47:21.885
She's not happy because she cannot do much and she's not able to move.

00:47:21.885 --> 00:47:33.530
And I also got her a wheelchair so that if she gets somebody by chance, she can be going outside to have some sunshine.

00:47:33.530 --> 00:47:37.364
So we are doing a lot of work.

00:47:37.364 --> 00:47:41.126
You take people where they find interest.

00:47:41.434 --> 00:47:43.744
That older person must have freedom.

00:47:43.744 --> 00:47:44.257
What is it that you can do best?

00:47:44.257 --> 00:47:51.355
Have freedom, what is it that you can do best?

00:47:51.355 --> 00:47:53.733
And I think it all goes around awareness.

00:47:53.733 --> 00:47:56.583
Who are you?

00:47:56.583 --> 00:48:01.012
What can you do?

00:48:01.012 --> 00:48:02.719
Should you just sit and die?

00:48:02.719 --> 00:48:10.289
You may not be able to do the things you used to do when you were young, but that doesn't mean you sit down.

00:48:10.289 --> 00:48:11.237
You must refuse.

00:48:11.237 --> 00:48:16.581
Remember these ones who get very sick and they can't do anything.

00:48:16.581 --> 00:48:18.201
Then they don't have a choice.

00:48:18.201 --> 00:48:19.436
I don't know.

00:48:19.436 --> 00:48:21.021
Something needs to be done.

00:48:21.021 --> 00:48:32.864
The rights need to be there, some support, but better still is that person can support him or herself.

00:48:32.864 --> 00:48:41.648
Because I always imagine if I didn't have a house to live in, I would feel terrible.

00:48:42.157 --> 00:48:49.425
Yeah, it's a combination, right, it's a combination of the dignity and the autonomy and the rights.

00:48:49.425 --> 00:48:57.407
It needs to go from one end all the way to the other, from the personal all the way to the systemic support.

00:48:57.407 --> 00:48:58.309
I hear you.

00:48:58.309 --> 00:48:59.960
Yeah, those are the things.

00:49:00.795 --> 00:49:02.298
There's a lot to talk.

00:49:02.298 --> 00:49:06.148
I can talk the whole night, but it's late here.

00:49:06.148 --> 00:49:07.217
Now it's late.

00:49:07.237 --> 00:49:08.784
I have to let you go.

00:49:08.784 --> 00:49:11.003
I could also listen to you for hours, Jane.

00:49:11.003 --> 00:49:11.817
You know what?

00:49:11.817 --> 00:49:17.878
Let's just agree this will be the first conversation and when the time is right, we'll have more.

00:49:17.878 --> 00:49:19.496
So much to learn from you.

00:49:19.657 --> 00:49:20.782
Just let me know.

00:49:20.782 --> 00:49:30.766
Thank you also for being there, because we may want to shout and our voice doesn't get very far.

00:49:30.766 --> 00:49:46.739
It may be like the organization I have is a CVO community-based organization, so you may shout within the walls but don't get very far within the walls but don't get very far.

00:49:46.739 --> 00:49:58.528
So when you have taken the burden to voice the voice for the voiceless, then I'm very excited and I'm happy, very, very thankful.

00:49:58.869 --> 00:50:08.275
Thank you, and I know that we all feel very much gratitude, much gratitude for you and all you do, and we will shout from the rooftops, jane.

00:50:08.275 --> 00:50:10.523
We'll amplify as much as possible.

00:50:10.523 --> 00:50:13.041
Just know now you have a chorus of voices with you.

00:50:13.041 --> 00:50:14.885
Thank you, thank you so much.

00:50:14.885 --> 00:50:16.923
Have a wonderful night, jane Bless you.