Welcome! This is ilana Landsberg-Lewis, your host for the Wisdom at Work podcast: Elderwomen, Older women and Grandmothers on the Move!
What follows is a special and exciting 10-part series... 'Age With Rights and Dignity' - 10 interviews in which we will hear from older and younger advocates from different corners of the world. 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 me, no matter how old we are now!
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Speaker 1 (00:00):
Welcome.
This is Ilana Landsberg-Lewis,your host for the Wisdom at Work
podcast.
Elder Women, older Women andGrandmothers on the Move.
What follows is a special andexciting 10-part series.
Have you ever thought about howhuman rights plays an essential
and meaningful role in ourolder age?
Well, you're in the right place.
You're listening to Age withRights and Dignity 10 interviews
(00:24):
in which we will hear fromolder and younger advocates from
different corners of the world.
These committed champions andadvocates will share with us why
they care about the rights ofolder persons and what they are
doing to help bring a new UnitedNations Convention on the
Rights of Older Persons intobeing for you and for me, no
(00:45):
matter how old we are.
Now Join the movement and raiseyour voice.
Go to the Age Noble HumanRights 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 theUN Convention on the Rights of
(01:08):
Older Persons.
I'm also excited to introduceyou to two wonderful guest
interviewers, younger women whoare committed to these issues
and will be joining me in thisseries to interview some of our
esteemed guests Faith Young andKira Goenis.
Thank you for joining us.
Enjoy this special initiative,and my thanks to Margaret Young,
(01:28):
the founder of Age Noble, forbringing this opportunity to us
to hear from these importantguests who promote the human
rights and the dignity of olderpersons the world over.
So today I have the greatpleasure of speaking with Jane
Nyerawada Miyano.
At age 75, jane is a communityvolunteer leader and resource
mobilizer for assistive productsfor the most vulnerable persons
(01:51):
with disabilities and olderpersons.
Jane's lifelong disabilitystarted as a baby, when she
suffered the effects of polio ateight months of age.
Throughout her childhood, youthand adulthood, jane experienced
firsthand the challenges ofliving with a progressive
disability.
She also saw the inequitiessuffered when one could not
access support because ofsystematic inequalities and
(02:14):
biased societal attitudes.
This is why Jane started theorganization Focus of Disabled
Persons in Nairobi, kenya, in2010, after retiring from the
workforce.
It's an organization where halfof its members are age 60 and
above.
As founder coordinator of thiscommunity-based organization,
jane raises awareness amongstdecision makers and ensures
(02:36):
people with disabilities of allages can access any aids and
assistive devices they need.
In addition to her nationaladvocacy and support work, jane
actively advocates globally andat the World Health Organization
and UN Division of Economicsand Social Development.
She's made many contributionsin many UN and international
(02:57):
arenas, amongst themcontributing to the WHO
wheelchair provision guidelinesin Geneva, a speaker at the
Global Assistive Technology UserNetwork Launch in Asia-Pacific
regions, and she is therecipient of an Honored with the
Head of State CommendationAward for Distinguished Service
in the Republic of Kenya.
Welcome, jane, it's a delightto have you with us.
Speaker 2 (03:20):
I'm glad to be here with you, Irana.
Speaker 1 (03:23):
Thank you, jane.
There's so much to talk aboutand so much to hear about from
you.
I want to ask you what hasinspired you to do the important
work that you do around therights of older persons, the
right to accessibility for olderpersons living with
disabilities?
What has led you to thisadvocacy and this important work
(03:43):
that you're doing and growingin the?
Speaker 2 (03:46):
village, experiencing discrimination in every angle,
(04:07):
because in the village therewere only two girls who suffered
polio at that time, and so youfind yourself not being able to
play like others, and if it wasnot for my mom, who was actually
a wise woman, she left us in2020.
(04:28):
But she is the one whoencouraged me to play along with
the others.
She did not shut me in, and soI think my faculties were able
to develop us like they are atSiegfried.
And then, at eight years, sherehabilitated me at home using
(04:51):
homemade operators, because shejust got three poles two at each
end and one in the middle andthere she told me to walk
throughout the day and myyounger sister is the one who
was to check on me, superviseand after some time I was able
(05:11):
to stand, and I was very excitedto stand on my own, but I
couldn't walk.
Then she later cut an ordinarystick, dried it up and brought
it to me.
This is the one you will beusing to walk.
And, of course, I was very muchwilling, very much excited to
walk like the other children,although not running, and that
(05:35):
is how I was able to join theother children to school at age
nine, because that was in 1959.
And because it was during thecolonial villages.
After five years we moved toour farms and she had to carry
me every morning, get me to thespools.
(05:57):
So within that time then Irealized unless you have a very,
very supportive parent, thenyou can't make it.
Remember, when I did mystandard eight, the KCPE in
Kenya Kenya Certificate ofPrimary Education there was
(06:20):
nothing that indicated that I'mdisabled and so I was called
into a regular school and Ijoined in.
That was for four years.
And of course, as I went home,my mother was to meet me and
head on the way and carry me.
But I was going to say, even inschool, things were not easy.
(06:43):
Immediately I got to Form 1.
I remember one young ladyshouting oh, who told Ms McKee
that this is a school for thecrippled.
I almost got shocked.
I wondered whether I wasactually in the right place.
So there we were, and somegirls even encouraged me.
(07:04):
So it was a lot of effort to.
So there we were, and somegirls even encouraged me.
So it was a lot of effort to bethere.
And when I came to Nairobi tolook for a job, my family had a
domestic problem.
The parents did not get alongvery well and it is almost like
so in every home in Africa whereyou have a child with a
(07:27):
disability, because there is ablame game for the parents,
wondering who is at fault andwhat I say.
It may not be the only reasonwhy they parted.
They parted and my mother, bythe time they parted, had
already lost one eye and lateron she.
(07:50):
People think it was notdifficult to get a job but it
was Okay.
We weren't very many who hadsome basic education.
(08:14):
It took time, but later I got ajob with Kenya Post and
Telecommunication and workedthere for 24 and a half years
and I had to leave because theywere doing some kind of
reorganization.
So I had to leave and when Icame back my mother was just
(08:37):
also joining me, now having losther son, and I stayed with her.
I did some artwork, big artworkfor survival.
But as you age, the strength isno longer there.
You don't do as much and youdon't get the social protection
in Kenya.
As long as you can get a smallpension, no matter how small,
(09:04):
you don't get social protection.
Even if you get to 70, the markis 70 plus, so it means I'm not
getting any social protection.
I cannot live alone.
Now I have bought a small housewhich I completed, and that is
(09:24):
where I'm now living in.
Speaker 1 (09:27):
It's a lot to appreciate.
Jane, I think I understandwhere the perseverance, the
resilience that you have comesfrom.
It sounds like your mother wasa real supporter.
Speaker 2 (09:39):
Yes, and I should have told you that when I
started doing awareness, Istarted very aggressively
advising the parents with thechildren with disabilities,
directing them on where do youtake your child for assessment,
where do you take your child formedical intervention, because I
(10:09):
realized early intervention iscrucial.
If my mom did not rehabilitateme by whatever means, then it
means I would never have worked.
Remember, there were notherapies, of course, there were
no interventions, so I wasn'table to get the car repair.
I had to go to a car repairshop until I got a job, so that
(10:30):
I bought my stuff.
And later on my friends,including the church, they
helped me to buy a car.
And the first promotion I gotbrought a little problem how do
you promote her?
And she's given half an hour toleave the office earlier than
(10:50):
the others.
And then after that I realizedI was in big trouble, so I
brought myself that tricycle tobe able to compete with them.
Although I joined as atelegraphist, I was really a
telegraph superintendent becauseI was able to compete with them
(11:14):
on the same basis.
So when I realized we need tomotivate each other, and
especially older persons withdisabilities, to reach ageist
ideas, Absolutely, and I want toask you more about this.
Speaker 1 (11:34):
I'm imagining, when I listen to you, jane, that your
experience as a child, it soundslike, has deeply informed your
understanding, not just yourlived experience as you age, but
you're actually able tounderstand what are the
different challenges for peoplewho are differently situated,
different ages, differentcircumstances, some in the rural
areas as opposed to urban areas.
(11:55):
You know what is thatrelationship between aging and
disability?
What is the kind of advocacythat you see is necessary?
Speaker 2 (12:04):
You know, when I talk I realize it's awkward for me
to talk without also myexperience In Africa, a woman of
my age who is not married andmaybe you don't have children
you are calling your own andmaybe you don't have children
(12:25):
you are calling your own istreated like you are not a full
person in the society, right?
And women with disabilities,even from a younger age, it
seems like they shouldn't have achoice.
The marriage in Africa is morecommunal.
A community in Africa is morecommunal, a community so that
(12:54):
even if a young man, it becomesa high task to be able to tell
your parents this is the oneI'll marry, despite having a
disability.
Many women with disabilitieswill have children, but not the
fathers.
The men don't want to beassociated with them.
I have formed some groups onefor persons with disability that
(13:16):
is the one I'm still focused ondisabled persons but there is
also another one called Visionfor Persons with Disabilities.
But there is also another onecalled Vision of Persons with
Disabilities, which is mainlyfor parents with children with
disabilities.
And whenever you call a meeting, you are not going to get a man
(13:37):
, you will get a lady solo,because it is a stigma that will
burden from joining in.
They don't want to beassociated.
So it becomes a woman's burdento bring up a child.
In fact, when I was going toschool, when my mother was
(13:58):
carrying me, of course they hadnot patterned, they had not
patented, but my father waswondering where will this girl
get a job?
In which office?
And my mother would say, by thetime she's done with the school
, there will be some offices forthem.
That was a big dream or avision, because it happened that
(14:26):
then I got a job.
But what I'm trying to say isthat the stigmatization is key
that is associated withdisability.
Life becomes quite difficult inthe community and everywhere
because even at a job with adisability there is
discrimination.
Yeah, because, like I said, Igot a job and there was no lift
(14:50):
on the first floor and I had tostruggle to get there and
sometimes the job was on secondfloor and again you had to try
and get there.
When the lift on the secondfloor is not working, you just
can't say otherwise.
I'm not very sure that theyknow that they are
(15:10):
discriminating when they don'tmake the environment accessible,
like even the transport.
It's a bit unfortunate.
I think they need to hear forthe transport.
It's a bit unfortunate.
I think the link here for thetransport by foreign women did
(15:31):
not go to the interviews thatthey had done from the persons
with disabilities, which I haddone Because I told them we have
a wheelchair at a bus stop youcan stay for hours and it is not
the fault of the public vehicledrivers, it is because the
(15:55):
vehicle is not facilitated orthere isn't a place to keep my
wheelchair in a shot.
So even if they were to help youto get to, how would you stay
there?
Yeah, and when you get to thecity, and for the older women,
(16:15):
if there are no clear paths towalk, how do they go to where
they wanted to go?
And there are no passages forwheelchair Right, are no
passages for wheelchair Right,so it becomes quite difficult,
not only for women but for allwho are aging.
Speaker 1 (16:34):
Yeah, there's so much that's interesting here to
unpack.
I wonder if the stigma that youtalk about that exists when
there are children who are bornwith disabilities or illnesses
that cause disabilities whenthey're young.
Do you find that for olderpersons as they're aging and
different kinds of disabilitiesemerge or happen to us as we age
(16:55):
, in terms of the discriminationand the stigma?
I mean, what is the advocacythat is needed for older people
as they age and are living withdisabilities?
Speaker 2 (17:04):
I'll tell you what it means to us.
One of the things that I havealso experienced as I do the
advocacy on accessibility iseven the donors for assistive
devices would rather assistfirst a younger person and not
(17:26):
another one.
And that is so practical thatanybody who is 70, they want to
say that one will get awheelchair and die quickly, but
the other, younger one will staylonger.
And then, as if that is notenough, the domestication of the
(17:49):
UN Convention on the Rights ofPersons with Disabilities.
When it is domesticated in manycountries of Africa or
developing countries, it doesn'texplicitly look at the persons
with disabilities who are aging.
Why do I say so?
(18:10):
If an older person wantssubsidy for a wheelchair or a
white chain or eyeglasses orsomething like that, they cannot
get it through the nationalcouncil.
Why they will be required toregister first before they can
benefit.
And what time is there toregister?
(18:31):
I wasn't registered.
If I had not gotten polio orgotten disabled at an early age,
then I would not be having mycertificate of disability
registration.
I would not be having mycertificate of disability
registration.
But if a person of my age wantsa wheelchair, they cannot
benefit Until then they arefastly distant as persons with
(18:55):
disabilities and it is becomingvery serious in Iran.
Somebody is in the hospital, hasjust been discharged and the
doctor says get a wheelchair sothat you can take this lady home
.
And they are struggling to payfor the hospital bills because
(19:15):
we don't have coverage.
It is just beginning in Kenyaand we are praying that it works
.
So, as things are now, it willbe very difficult for those
people to buy a wheelchair andpay the hospital bill without
doing some fundraising.
I'm talking with the passionbecause they think let's call
(19:38):
they call me Auntie Jane, so ifthey call me and I can't get one
, then it becomes very difficult.
But this immediate thing wherethat person gets a wheelchair to
go home, or they want awheelchair to be taking the
older person outside to havesome sunshine, and they can't
(20:02):
get help.
So although I'm an advocate ofappropriate assistive device,
then you find breaking the rule.
You have this one thing atleast to get home.
So what I'm trying to say isthat things don't get better.
(20:25):
You are always looked at.
You have had the older people,especially women, being told to
leave.
Which doctors?
Why?
Because of ageism, ageist ideas.
So it is threatening.
It's like you lose your valueas you age.
(20:45):
It's like you lose your valueas you age and, of course, you
also lose a number of friends ifyou don't stay up like this.
Speaker 1 (20:56):
I mean it's very painful to hear because we're
not just telling stories, theseare real people's lives that
have value and worth, and so youthink about people being
isolated and discriminatedagainst, but also just not being
thought of, not being counted,you know so that if you don't
(21:20):
have an Auntie Jane to call, youknow then, and if you don't, we
may not have gotten to that.
Speaker 2 (21:23):
But the geriatric If that education was done, there
can be a lot of intervention.
One time I got admitted inhospital.
I could have afforded a privateroom, but I said I'm going to
stay in the room where theothers were and the mistreatment
(21:46):
made me shudder.
I had decided I was going towrite a big complaint letter and
leave it to them, but I saidI'm going to see the doctor.
I saw the doctor before I left.
Speaker 1 (22:02):
And.
Speaker 2 (22:02):
I told them.
I don't see why another personshould ask for a pen to help
herself and then, when she doesit on the bed, everything is
really poor.
So I felt very bad and so I getmotivated to really talk about
(22:27):
those treatments that are there.
I have heard my story like Iwanted to go.
I was to go to Geneva for a WHOmeeting and there somebody says
, unless you are accompanied bya medical doctor, you cannot go.
You cannot use our ERM.
(22:47):
Then I said, no, I will not.
I'm going to a meeting, not fortreatment.
So I argued and argued.
I was almost late for themeeting because I said, no, I
would rather stop going thanhear what you are saying.
It is not good at all.
(23:09):
Why is it that I had been goingbefore, but when I turned 75, I
wasn't 75, but how many yearswas I?
2022.
They said, you know.
And then I told the WHO no, no,no, I'm not coming.
And that's exactly me.
(23:29):
Afraid of no, no, no, I'm notcoming.
And that's exactly me.
Afraid of them, more afraidthan them.
I was happy they did it and Iwent.
We feel like discrimination isover.
I want to get a small loan todo something.
And the bank says as long asyou are 70 years, unless you
come with a younger person, youcan't come and get your own.
(23:52):
They think you cannot.
They think something has gonewrong with your head.
Speaker 1 (23:59):
Okay, I'm eager to ask you this why is it so
important to have a UNConvention on the Rights of
Older Persons?
It so important to have a UNConvention on the Rights of
Older Persons, and how do yousee that it will make a
difference in the lives of olderpersons at the community level,
at the national level, in Kenyaor any other country?
Speaker 2 (24:18):
Wow, Having looked at the other institutes and so
much so this one for CRPD, I'vealways said that Article 25B of
the UN CRPV mentions olderpeople, kind of saying we will
all be entitled to benefit fromthe assistive devices and all
(24:44):
the services that should begiven to the persons with
disabilities, including theolder women, the children.
But when it comes to the groundI've already told you the story
of what will happen we willrequire that that older person
register first as a person witha disability in order to benefit
(25:08):
.
Well, it is good for the data,so that they will know how many
people do we have in the countrywith disability and who
particularly benefited.
That is okay, but it alsoleaves the older people out, and
in a big way.
So I envisage a UN Conventionon the Rights of Older People
(25:33):
will be another instrument thatis looking at the implementation
of the domestic instruments andalso involving giving us a
voice in decision-making andsaying how best it can serve us.
If that was to be done, we canhave dignified lives and
(25:57):
productive, because we will alsobe able to insist.
I need an appropriate assistivedevice for me, as it were.
I have told you they getassistive devices from the
donors mostly and when you aregiven.
So I look forward and I thinkit will be wonderful.
(26:20):
It will give us human rights.
On transportation accessibilityhow do I get?
Even if there was a dispensarynear me and I cannot board the
public means, how do I get there?
(26:41):
When they talk of digitalservices on health, do I know
how to operate?
Has somebody taught me?
Education for the older peoplehere is like a big story,
(27:02):
especially the basic.
There is adult education, butit's not very much highlighted.
I know my mother had joined andshe was able to do her shop, to
run her shop, because she hadalready learned something that
is lacking, so that if anotherperson would be having, they
(27:24):
have experienced a lot offorgery from the younger people,
the sons and daughters and eventhe grandchildren, because they
lack education.
So I look at it like it wouldgive us an opening to the other
rights.
Human rights yeah, all of themyes.
(27:44):
To the other rights humanrights yeah, yeah, all of them
yes.
And I think that's such apowerful difference and again,
it would make the governmenthave a document for guidance.
Yeah, how do they measure theirsuccess, whether they are
(28:08):
treating as well?
It is not that there are nodocuments at all in countries
domesticated, but you realizethey don't have a guideline to
really implement.
Otherwise they could be thereto really implement, otherwise
they could be there, like ourconstitution mentioned quite
(28:32):
much of other people.
But the implementations is abig issue and when they do the
social protection, it's mainlyin cash transfers.
The other areas are yet and thecash transfers I have seen
(28:55):
somewhere else, maybe you willnote, with the interview with
someone from the government.
My argument is the 2,000 cannotbuy you food, buy you medicine,
but as you age you are likelyto suffer some conditions and
(29:18):
non-communicable diseases.
How do you buy medicine, buyfood, accommodate yourself, and
even if you have a small houseor a house, let me call it house
how do you pay the bills?
Yes, life is really bad, yousee, for them.
Speaker 1 (29:44):
Yes.
Speaker 2 (29:50):
And it's a way to hold the government accountable.
Yes, it is.
You hold the governmentaccountable with that, and
especially when it is comingfrom UN.
When it is coming from UN, thenit is abiding document.
Yes, like they do in the UNCRPD.
Yes, yeah, every yeah.
(30:12):
You go there and you are ableto argue what have you done,
what have we done, and youcompare.
Then you can come out withsomething, some development, but
without the convention.
Specifically for us, it'sbasically looking at the issues
(30:37):
that are on hand when thingsbecome harder.
We have unique, unique problemswhich need a unique document
which can spotlight our issuessignificantly.
Speaker 1 (31:02):
Okay, so let's.
I love that we should end there, but I want to ask you.
I want to ask you because Iknow you're very busy
campaigning for universal accessto health care.
So I want to leave you withoutgiving you the opportunity to
lift your voice around thisissue, and I know what a huge
impact it will have on olderpersons.
(31:23):
So I want to make sure that wehear what you have to say about
this.
Speaker 2 (31:27):
And remember I have told you, when they have a small
pension, no matter how small,you cannot benefit from the
social protection.
And you realize, even those whoare adequately pensioned, the
people who have what they wouldcall good enough not adequate
(31:50):
but good enough would realizehere, because of lack of
employment, which could be theworld over, no matter how old,
what the parents are getting isthe money that is sustaining the
families.
Getting is the money that issustaining the families.
Like, if the children have beeneducated to university level,
(32:16):
higher education, and theycannot get a job, what happens?
They are living on your pensionbecause, unlike other places
maybe, where the youth who havecompleted education they have
education without money would besupported by the government, in
(32:39):
the developing countries we areyet.
And so the same parents withthe ritual pension or with the
pension that they are getting,then they support them and so
they go out.
They are students of livinganyway.
And then for some, like me, Idon't get a big pension.
(33:04):
And then when you come in, youalso realize you have a mother
to take care of and you are notworking.
You are no longer working andit becomes your responsibility.
There are those older peoplewho have also been left with
(33:24):
their grandchildren, been leftwith the grandchildren.
Like you remember, during theHIV so many families were left
with their parents, so grandmaswere left with the children.
So what do you give them?
$2,000 per month.
What can they do with that?
(33:45):
It's good, but little.
And yet we cannot complain somuch that it should be increased
, because there are many moreonly a small part who are
benefiting it.
So the others are not.
(34:06):
Many more are not.
So you would rather the othersalso got something little before
it can be increased.
So the hospital bills becomes amatter of fundraising.
There is a new system which weare yet to understand, changing
(34:30):
from National Hospital Insuranceand changing to Social Hospital
Insurance Fund.
It is yet to take place, but ifit did, if it was to come and
take care, especially on chronicdiseases, most of them
(34:51):
non-communicable, it would helpa lot.
The older person I want to saywe are becoming burdensome to
the families and we don't wantto die very quickly.
The older people here don'twant to go to the homes.
You know they want to stay withthe children.
You know they want to stay withthe children, no matter how
little they are getting.
(35:12):
My mother had told me if I tookher there, things would be very
bad.
She didn't want to go, so wehad to stay with her.
The only good thing is I have asister, a younger sister, and
her children, who are verylovely.
They will remain.
So if I was to engage a house,help or live in person with the
(35:35):
little money that I get, youknow and I'm no longer now my
hands are not very strong now tocontinue making the bids when I
have, if I get an order, I getsome people to do it.
Then I pay them something andget something from the work, but
(35:58):
not physically doing it like Ido.
I don't know whether I havesaid anything you have.
Speaker 1 (36:06):
You have.
I mean, it's well.
Your voice is strong.
Even while your hands are notas strong as they used to be,
your voice is still strong.
But you know, I hear whatyou're saying, jane.
It's as we get older and as weage.
You don't want to be a burdento the family.
(36:26):
You really don't want to be aburden to the family.
Speaker 2 (36:28):
You really don't want to, but it doesn't matter.
But like what I?
Maybe I should have told youjust a little that when the
family separated I had to helpmy mother educate my siblings
All through and unfortunatethings happening thereafter my
(36:50):
brother was my wife and then Ihad to bring up the daughters.
So I'm not complaining myself,but I did a lot of work to earn
respect.
Respect, yes.
That is why maybe I'm lookedafter and I'm able to stay with
a sound mind about other things.
(37:11):
But these days I really have.
I used to board my vehicle on myown with crutches.
Both places Go to get childrenfrom the slums around here, take
them to Pisa, I suppose, lookfor schools, look for sponsors
(37:33):
they're still coming, so theystill call.
What I do is I don't go much.
They call and when they getsome wheelchairs and there are
some people who need them olderpeople instead of me going,
their people will come for them.
(37:54):
As long as we can keep a record, I have somewhere where I keep
them in a certain faith-basedinstitution and there I'll keep
them and send somebody thereRight On record and they take a
wheelchair and they go.
(38:15):
That's why you don't see mepresenting the wheelchairs and
the way I was presenting, I wasfeeling like these people may
not want to appear somewhere andI may not get them to give a
consent for their appearance.
Yes, yes, did you know?
(38:35):
I went to Geneva in 2022, themeeting I'm talking about, I had
gone for the wheelchairguidelines provision, a
technical meeting.
That's the one I was trying todo.
Speaker 1 (38:49):
Oh, that was the meeting.
Speaker 2 (38:51):
Yeah, because I had done all throughout almost the
whole year.
I was in the guidelinesdevelopment group for a whole
year, then we went to Geneva nowfor the check-in for meetings
and now there is a document forthe wheelchair provision which
is being implemented all over,and I feel good.
Speaker 1 (39:16):
Yes, you should, and I'm very grateful for everything
I just recently.
Speaker 2 (39:23):
I'm going to speak to a group.
They will be having a walk toraise some funds for a therapy
for speak to a group.
They will be having a walk toraise some funds for a therapy
for children with disabilitiesand they won't be able to be a
speaker.
They are less speakers.
I'm telling them I don't havemuch money that I can talk, so
(39:45):
as long as I can get there, Iwill go and encourage them.
Things are going on.
My hands are not strong, buteven my legs they were
struggling to do it.
Speaker 1 (40:01):
You have an extraordinary life of adapting
and finding a way through, jane.
If one thing doesn't work, youclearly try another until you
make it work.
This is very clear from yourstory and I wonder, so let's end
this way.
If there are other advocates orolder persons living with
(40:21):
disabilities and they werestruggling as you have had to
struggle and as you've seenothers struggle, and they don't
know anything about all of thisadvocacy to get a UN convention
on the rights of older persons,they don't know anything about
it.
What should we say to them?
(40:42):
What would you say to them, toolder people who are having
their own struggles and dealingwith ageism and dealing with
lack of accessibility perhapsthey're living with disabilities
what would you say to them?
When we talk to them aboutworking towards a convention,
(41:03):
what message would you send tothem?
Speaker 2 (41:06):
What message would you send to them?
I would tell them the UNConvention.
I think one of the things weshould do is create awareness.
What is it?
What is that convention?
Awareness raising is key.
When I make the meetings, theones that I used to either tell
(41:31):
people to donate and I don'twant them to give me money what
I do is, if there is a childthat needs a wheelchair, that
child will be sent to theassociation for Physical Disease
, kenya.
What is it that is required?
(41:51):
It is assessed, the intent.
Then this donor will pay, right.
So because I don't have moneyon me, right?
So what I'm saying?
I think the issue is awareness.
(42:12):
What is the convention?
That one?
They don't know.
And I started a group for olderpeople, but there is only one
man and nine women, including me, and they meet outside.
(42:32):
Here.
I have a place where they canmeet at some seats and I don't
charge them the value, butbecause the seats are not mine,
they are for another group Thenshe will sit in the chair.
(42:56):
So when they started gettingtogether, then I have the
opportunity to tell them whythey should fight for their
rights, and I'll tell you whenthey come here.
We don't want to stay here alltime, make some tea and play
(43:19):
together when there is one witha bad thing.
Like you, put three togetherfor January, february, march,
then they can do in March.
Like you put three together forJanuary, february, march, then
they can do March together, abirthday for all of them.
And they buy the cake and theycook some food and some meat and
(43:44):
we eat.
So what I'm saying women canfight and men can fight for
their rights.
What surprises me is that olderman says the others tell him
they are not old.
Is that ageist or what is it?
(44:07):
They are not old.
They are not old.
Is that ageist or what is it?
They are not old.
They are not old, they are notyoung.
We call it golden light aging.
Golden light aging.
I love that.
When they come together, theyhave a lot.
We are given assignments.
You are going to find out aboutthe health system status.
(44:34):
Some of them are stored.
That is your assignment.
Come and tell us, come andteach all of us how to use some
digital skills, and they comeand do it.
Another one is to teach us howto exercise when we get there.
(44:57):
Yeah, there is prayer, there isBible reading, there is some
exercises.
Before you start the meeting andit's not only a meeting you do
what you call table banking.
Table banking, the amount isnot the matter.
(45:21):
We are not meeting here becauseof money.
Just recently I was interveningfor another lady who had lived
in the USA for a long time andkind of she had lost the friends
she left in Kenya and on thisside she felt very, very lonely
(45:44):
and I had to start looking forwho is staying near her.
What is it that they can bedoing together?
And because money is not anissue to her, she was not
interested in the bubble, butshe was interested in having a
(46:09):
group to meet and I'm now gladshe's meeting with other friends
, in fact in two churches.
Now, If your problem isisolation and they're not in
money, you don't have to comewhere they are giving a table
(46:29):
bouncing of $20,000.
You can read your Bible, youcan do the other things,
exercises and she is feelingvery good.
She has joined what they callBSF Bible study, kindf Bible
study, kind of Bible study,fellowship and she's doing it.
(46:54):
And now I'm so sure that shewill no longer stay and tell me
that she's doing nothing Right.
Of course I have another one whois also not able to do anything
because of rheumatism,arthritis, and that one is
really.
(47:14):
She's not happy because shecannot do much and she's not
able to move.
And I also got her a wheelchairso that if she gets somebody by
chance, she can be goingoutside to have some sunshine.
So we are doing a lot of work.
(47:37):
You take people where they findinterest.
That older person must havefreedom.
What is it that you can do best?
Have freedom, what is it thatyou can do best?
And I think it all goes aroundawareness.
Who are you?
What can you do?
(48:01):
Should you just sit and die?
You may not be able to do thethings you used to do when you
were young, but that doesn'tmean you sit down.
You must refuse.
Remember these ones who getvery sick and they can't do
anything.
Then they don't have a choice.
I don't know.
Something needs to be done.
(48:21):
The rights need to be there,some support, but better still
is that person can support himor herself.
Because I always imagine if Ididn't have a house to live in,
I would feel terrible.
Speaker 1 (48:42):
Yeah, it's a combination, right, it's a
combination of the dignity andthe autonomy and the rights.
It needs to go from one end allthe way to the other, from the
personal all the way to thesystemic support.
I hear you.
Yeah, those are the things.
Speaker 2 (49:00):
There's a lot to talk .
I can talk the whole night, butit's late here.
Now it's late.
Speaker 1 (49:07):
I have to let you go.
I could also listen to you forhours, Jane.
You know what?
Let's just agree this will bethe first conversation and when
the time is right, we'll havemore.
So much to learn from you.
Speaker 2 (49:19):
Just let me know.
Thank you also for being there,because we may want to shout
and our voice doesn't get veryfar.
It may be like the organizationI have is a CVO community-based
organization, so you may shoutwithin the walls but don't get
(49:45):
very far within the walls butdon't get very far.
So when you have taken theburden to voice the voice for
the voiceless, then I'm veryexcited and I'm happy, very,
very thankful.
Speaker 1 (49:58):
Thank you, and I know that we all feel very much
gratitude, much gratitude foryou and all you do, and we will
shout from the rooftops, jane.
We'll amplify as much aspossible.
Just know now you have a chorusof voices with you.
Thank you, thank you so much.
Have a wonderful night, janeBless you.
Welcome.
This is Ilana Landsberg-Lewis,your host for the Wisdom at Work
podcast.
Elder Women, older Women andGrandmothers on the Move.
What follows is a special andexciting 10-part series.
Have you ever thought about howhuman rights plays an essential
and meaningful role in ourolder age?
Well, you're in the right place.
You're listening to Age withRights and Dignity 10 interviews
(00:24):
in which we will hear fromolder and younger advocates from
different corners of the world.
These committed champions andadvocates will share with us why
they care about the rights ofolder persons and what they are
doing to help bring a new UnitedNations Convention on the
Rights of Older Persons intobeing for you and for me, no
(00:45):
matter how old we are.
Now Join the movement and raiseyour voice.
Go to the Age Noble HumanRights 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 theUN Convention on the Rights of
(01:08):
Older Persons.
I'm also excited to introduceyou to two wonderful guest
interviewers, younger women whoare committed to these issues
and will be joining me in thisseries to interview some of our
esteemed guests Faith Young andKira Goenis.
Thank you for joining us.
Enjoy this special initiative,and my thanks to Margaret Young,
(01:28):
the founder of Age Noble, forbringing this opportunity to us
to hear from these importantguests who promote the human
rights and the dignity of olderpersons the world over.
So today I have the greatpleasure of speaking with Jane
Nyerawada Miyano.
At age 75, jane is a communityvolunteer leader and resource
mobilizer for assistive productsfor the most vulnerable persons
(01:51):
with disabilities and olderpersons.
Jane's lifelong disabilitystarted as a baby, when she
suffered the effects of polio ateight months of age.
Throughout her childhood, youthand adulthood, jane experienced
firsthand the challenges ofliving with a progressive
disability.
She also saw the inequitiessuffered when one could not
access support because ofsystematic inequalities and
(02:14):
biased societal attitudes.
This is why Jane started theorganization Focus of Disabled
Persons in Nairobi, kenya, in2010, after retiring from the
workforce.
It's an organization where halfof its members are age 60 and
above.
As founder coordinator of thiscommunity-based organization,
jane raises awareness amongstdecision makers and ensures
(02:36):
people with disabilities of allages can access any aids and
assistive devices they need.
In addition to her nationaladvocacy and support work, jane
actively advocates globally andat the World Health Organization
and UN Division of Economicsand Social Development.
She's made many contributionsin many UN and international
(02:57):
arenas, amongst themcontributing to the WHO
wheelchair provision guidelinesin Geneva, a speaker at the
Global Assistive Technology UserNetwork Launch in Asia-Pacific
regions, and she is therecipient of an Honored with the
Head of State CommendationAward for Distinguished Service
in the Republic of Kenya.
Welcome, jane, it's a delightto have you with us.
Speaker 2 (03:20):
I'm glad to be here with you, Irana.
Speaker 1 (03:23):
Thank you, jane.
There's so much to talk aboutand so much to hear about from
you.
I want to ask you what hasinspired you to do the important
work that you do around therights of older persons, the
right to accessibility for olderpersons living with
disabilities?
What has led you to thisadvocacy and this important work
(03:43):
that you're doing and growingin the?
Speaker 2 (03:46):
village, experiencing discrimination in every angle,
(04:07):
because in the village therewere only two girls who suffered
polio at that time, and so youfind yourself not being able to
play like others, and if it wasnot for my mom, who was actually
a wise woman, she left us in2020.
(04:28):
But she is the one whoencouraged me to play along with
the others.
She did not shut me in, and soI think my faculties were able
to develop us like they are atSiegfried.
And then, at eight years, sherehabilitated me at home using
(04:51):
homemade operators, because shejust got three poles two at each
end and one in the middle andthere she told me to walk
throughout the day and myyounger sister is the one who
was to check on me, superviseand after some time I was able
(05:11):
to stand, and I was very excitedto stand on my own, but I
couldn't walk.
Then she later cut an ordinarystick, dried it up and brought
it to me.
This is the one you will beusing to walk.
And, of course, I was very muchwilling, very much excited to
walk like the other children,although not running, and that
(05:35):
is how I was able to join theother children to school at age
nine, because that was in 1959.
And because it was during thecolonial villages.
After five years we moved toour farms and she had to carry
me every morning, get me to thespools.
(05:57):
So within that time then Irealized unless you have a very,
very supportive parent, thenyou can't make it.
Remember, when I did mystandard eight, the KCPE in
Kenya Kenya Certificate ofPrimary Education there was
(06:20):
nothing that indicated that I'mdisabled and so I was called
into a regular school and Ijoined in.
That was for four years.
And of course, as I went home,my mother was to meet me and
head on the way and carry me.
But I was going to say, even inschool, things were not easy.
(06:43):
Immediately I got to Form 1.
I remember one young ladyshouting oh, who told Ms McKee
that this is a school for thecrippled.
I almost got shocked.
I wondered whether I wasactually in the right place.
So there we were, and somegirls even encouraged me.
(07:04):
So it was a lot of effort to.
So there we were, and somegirls even encouraged me.
So it was a lot of effort to bethere.
And when I came to Nairobi tolook for a job, my family had a
domestic problem.
The parents did not get alongvery well and it is almost like
so in every home in Africa whereyou have a child with a
(07:27):
disability, because there is ablame game for the parents,
wondering who is at fault andwhat I say.
It may not be the only reasonwhy they parted.
They parted and my mother, bythe time they parted, had
already lost one eye and lateron she.
(07:50):
People think it was notdifficult to get a job but it
was Okay.
We weren't very many who hadsome basic education.
(08:14):
It took time, but later I got ajob with Kenya Post and
Telecommunication and workedthere for 24 and a half years
and I had to leave because theywere doing some kind of
reorganization.
So I had to leave and when Icame back my mother was just
(08:37):
also joining me, now having losther son, and I stayed with her.
I did some artwork, big artworkfor survival.
But as you age, the strength isno longer there.
You don't do as much and youdon't get the social protection
in Kenya.
As long as you can get a smallpension, no matter how small,
(09:04):
you don't get social protection.
Even if you get to 70, the markis 70 plus, so it means I'm not
getting any social protection.
I cannot live alone.
Now I have bought a small housewhich I completed, and that is
(09:24):
where I'm now living in.
Speaker 1 (09:27):
It's a lot to appreciate.
Jane, I think I understandwhere the perseverance, the
resilience that you have comesfrom.
It sounds like your mother wasa real supporter.
Speaker 2 (09:39):
Yes, and I should have told you that when I
started doing awareness, Istarted very aggressively
advising the parents with thechildren with disabilities,
directing them on where do youtake your child for assessment,
where do you take your child formedical intervention, because I
(10:09):
realized early intervention iscrucial.
If my mom did not rehabilitateme by whatever means, then it
means I would never have worked.
Remember, there were notherapies, of course, there were
no interventions, so I wasn'table to get the car repair.
I had to go to a car repairshop until I got a job, so that
(10:30):
I bought my stuff.
And later on my friends,including the church, they
helped me to buy a car.
And the first promotion I gotbrought a little problem how do
you promote her?
And she's given half an hour toleave the office earlier than
(10:50):
the others.
And then after that I realizedI was in big trouble, so I
brought myself that tricycle tobe able to compete with them.
Although I joined as atelegraphist, I was really a
telegraph superintendent becauseI was able to compete with them
(11:14):
on the same basis.
So when I realized we need tomotivate each other, and
especially older persons withdisabilities, to reach ageist
ideas, Absolutely, and I want toask you more about this.
Speaker 1 (11:34):
I'm imagining, when I listen to you, jane, that your
experience as a child, it soundslike, has deeply informed your
understanding, not just yourlived experience as you age, but
you're actually able tounderstand what are the
different challenges for peoplewho are differently situated,
different ages, differentcircumstances, some in the rural
areas as opposed to urban areas.
(11:55):
You know what is thatrelationship between aging and
disability?
What is the kind of advocacythat you see is necessary?
Speaker 2 (12:04):
You know, when I talk I realize it's awkward for me
to talk without also myexperience In Africa, a woman of
my age who is not married andmaybe you don't have children
you are calling your own andmaybe you don't have children
(12:25):
you are calling your own istreated like you are not a full
person in the society, right?
And women with disabilities,even from a younger age, it
seems like they shouldn't have achoice.
The marriage in Africa is morecommunal.
A community in Africa is morecommunal, a community so that
(12:54):
even if a young man, it becomesa high task to be able to tell
your parents this is the oneI'll marry, despite having a
disability.
Many women with disabilitieswill have children, but not the
fathers.
The men don't want to beassociated with them.
I have formed some groups onefor persons with disability that
(13:16):
is the one I'm still focused ondisabled persons but there is
also another one called Visionfor Persons with Disabilities.
But there is also another onecalled Vision of Persons with
Disabilities, which is mainlyfor parents with children with
disabilities.
And whenever you call a meeting, you are not going to get a man
(13:37):
, you will get a lady solo,because it is a stigma that will
burden from joining in.
They don't want to beassociated.
So it becomes a woman's burdento bring up a child.
In fact, when I was going toschool, when my mother was
(13:58):
carrying me, of course they hadnot patterned, they had not
patented, but my father waswondering where will this girl
get a job?
In which office?
And my mother would say, by thetime she's done with the school
, there will be some offices forthem.
That was a big dream or avision, because it happened that
(14:26):
then I got a job.
But what I'm trying to say isthat the stigmatization is key
that is associated withdisability.
Life becomes quite difficult inthe community and everywhere
because even at a job with adisability there is
discrimination.
Yeah, because, like I said, Igot a job and there was no lift
(14:50):
on the first floor and I had tostruggle to get there and
sometimes the job was on secondfloor and again you had to try
and get there.
When the lift on the secondfloor is not working, you just
can't say otherwise.
I'm not very sure that theyknow that they are
(15:10):
discriminating when they don'tmake the environment accessible,
like even the transport.
It's a bit unfortunate.
I think they need to hear forthe transport.
It's a bit unfortunate.
I think the link here for thetransport by foreign women did
(15:31):
not go to the interviews thatthey had done from the persons
with disabilities, which I haddone Because I told them we have
a wheelchair at a bus stop youcan stay for hours and it is not
the fault of the public vehicledrivers, it is because the
(15:55):
vehicle is not facilitated orthere isn't a place to keep my
wheelchair in a shot.
So even if they were to help youto get to, how would you stay
there?
Yeah, and when you get to thecity, and for the older women,
(16:15):
if there are no clear paths towalk, how do they go to where
they wanted to go?
And there are no passages forwheelchair Right, are no
passages for wheelchair Right,so it becomes quite difficult,
not only for women but for allwho are aging.
Speaker 1 (16:34):
Yeah, there's so much that's interesting here to
unpack.
I wonder if the stigma that youtalk about that exists when
there are children who are bornwith disabilities or illnesses
that cause disabilities whenthey're young.
Do you find that for olderpersons as they're aging and
different kinds of disabilitiesemerge or happen to us as we age
(16:55):
, in terms of the discriminationand the stigma?
I mean, what is the advocacythat is needed for older people
as they age and are living withdisabilities?
Speaker 2 (17:04):
I'll tell you what it means to us.
One of the things that I havealso experienced as I do the
advocacy on accessibility iseven the donors for assistive
devices would rather assistfirst a younger person and not
(17:26):
another one.
And that is so practical thatanybody who is 70, they want to
say that one will get awheelchair and die quickly, but
the other, younger one will staylonger.
And then, as if that is notenough, the domestication of the
(17:49):
UN Convention on the Rights ofPersons with Disabilities.
When it is domesticated in manycountries of Africa or
developing countries, it doesn'texplicitly look at the persons
with disabilities who are aging.
Why do I say so?
(18:10):
If an older person wantssubsidy for a wheelchair or a
white chain or eyeglasses orsomething like that, they cannot
get it through the nationalcouncil.
Why they will be required toregister first before they can
benefit.
And what time is there toregister?
(18:31):
I wasn't registered.
If I had not gotten polio orgotten disabled at an early age,
then I would not be having mycertificate of disability
registration.
I would not be having mycertificate of disability
registration.
But if a person of my age wantsa wheelchair, they cannot
benefit Until then they arefastly distant as persons with
(18:55):
disabilities and it is becomingvery serious in Iran.
Somebody is in the hospital, hasjust been discharged and the
doctor says get a wheelchair sothat you can take this lady home
.
And they are struggling to payfor the hospital bills because
(19:15):
we don't have coverage.
It is just beginning in Kenyaand we are praying that it works
.
So, as things are now, it willbe very difficult for those
people to buy a wheelchair andpay the hospital bill without
doing some fundraising.
I'm talking with the passionbecause they think let's call
(19:38):
they call me Auntie Jane, so ifthey call me and I can't get one
, then it becomes very difficult.
But this immediate thing wherethat person gets a wheelchair to
go home, or they want awheelchair to be taking the
older person outside to havesome sunshine, and they can't
(20:02):
get help.
So although I'm an advocate ofappropriate assistive device,
then you find breaking the rule.
You have this one thing atleast to get home.
So what I'm trying to say isthat things don't get better.
(20:25):
You are always looked at.
You have had the older people,especially women, being told to
leave.
Which doctors?
Why?
Because of ageism, ageist ideas.
So it is threatening.
It's like you lose your valueas you age.
(20:45):
It's like you lose your valueas you age and, of course, you
also lose a number of friends ifyou don't stay up like this.
Speaker 1 (20:56):
I mean it's very painful to hear because we're
not just telling stories, theseare real people's lives that
have value and worth, and so youthink about people being
isolated and discriminatedagainst, but also just not being
thought of, not being counted,you know so that if you don't
(21:20):
have an Auntie Jane to call, youknow then, and if you don't, we
may not have gotten to that.
Speaker 2 (21:23):
But the geriatric If that education was done, there
can be a lot of intervention.
One time I got admitted inhospital.
I could have afforded a privateroom, but I said I'm going to
stay in the room where theothers were and the mistreatment
(21:46):
made me shudder.
I had decided I was going towrite a big complaint letter and
leave it to them, but I saidI'm going to see the doctor.
I saw the doctor before I left.
Speaker 1 (22:02):
And.
Speaker 2 (22:02):
I told them.
I don't see why another personshould ask for a pen to help
herself and then, when she doesit on the bed, everything is
really poor.
So I felt very bad and so I getmotivated to really talk about
(22:27):
those treatments that are there.
I have heard my story like Iwanted to go.
I was to go to Geneva for a WHOmeeting and there somebody says
, unless you are accompanied bya medical doctor, you cannot go.
You cannot use our ERM.
(22:47):
Then I said, no, I will not.
I'm going to a meeting, not fortreatment.
So I argued and argued.
I was almost late for themeeting because I said, no, I
would rather stop going thanhear what you are saying.
It is not good at all.
(23:09):
Why is it that I had been goingbefore, but when I turned 75, I
wasn't 75, but how many yearswas I?
2022.
They said, you know.
And then I told the WHO no, no,no, I'm not coming.
And that's exactly me.
(23:29):
Afraid of no, no, no, I'm notcoming.
And that's exactly me.
Afraid of them, more afraidthan them.
I was happy they did it and Iwent.
We feel like discrimination isover.
I want to get a small loan todo something.
And the bank says as long asyou are 70 years, unless you
come with a younger person, youcan't come and get your own.
(23:52):
They think you cannot.
They think something has gonewrong with your head.
Speaker 1 (23:59):
Okay, I'm eager to ask you this why is it so
important to have a UNConvention on the Rights of
Older Persons?
It so important to have a UNConvention on the Rights of
Older Persons, and how do yousee that it will make a
difference in the lives of olderpersons at the community level,
at the national level, in Kenyaor any other country?
Speaker 2 (24:18):
Wow, Having looked at the other institutes and so
much so this one for CRPD, I'vealways said that Article 25B of
the UN CRPV mentions olderpeople, kind of saying we will
all be entitled to benefit fromthe assistive devices and all
(24:44):
the services that should begiven to the persons with
disabilities, including theolder women, the children.
But when it comes to the groundI've already told you the story
of what will happen we willrequire that that older person
register first as a person witha disability in order to benefit
(25:08):
.
Well, it is good for the data,so that they will know how many
people do we have in the countrywith disability and who
particularly benefited.
That is okay, but it alsoleaves the older people out, and
in a big way.
So I envisage a UN Conventionon the Rights of Older People
(25:33):
will be another instrument thatis looking at the implementation
of the domestic instruments andalso involving giving us a
voice in decision-making andsaying how best it can serve us.
If that was to be done, we canhave dignified lives and
(25:57):
productive, because we will alsobe able to insist.
I need an appropriate assistivedevice for me, as it were.
I have told you they getassistive devices from the
donors mostly and when you aregiven.
So I look forward and I thinkit will be wonderful.
(26:20):
It will give us human rights.
On transportation accessibilityhow do I get?
Even if there was a dispensarynear me and I cannot board the
public means, how do I get there?
(26:41):
When they talk of digitalservices on health, do I know
how to operate?
Has somebody taught me?
Education for the older peoplehere is like a big story,
(27:02):
especially the basic.
There is adult education, butit's not very much highlighted.
I know my mother had joined andshe was able to do her shop, to
run her shop, because she hadalready learned something that
is lacking, so that if anotherperson would be having, they
(27:24):
have experienced a lot offorgery from the younger people,
the sons and daughters and eventhe grandchildren, because they
lack education.
So I look at it like it wouldgive us an opening to the other
rights.
Human rights yeah, all of themyes.
(27:44):
To the other rights humanrights yeah, yeah, all of them
yes.
And I think that's such apowerful difference and again,
it would make the governmenthave a document for guidance.
Yeah, how do they measure theirsuccess, whether they are
(28:08):
treating as well?
It is not that there are nodocuments at all in countries
domesticated, but you realizethey don't have a guideline to
really implement.
Otherwise they could be thereto really implement, otherwise
they could be there, like ourconstitution mentioned quite
(28:32):
much of other people.
But the implementations is abig issue and when they do the
social protection, it's mainlyin cash transfers.
The other areas are yet and thecash transfers I have seen
(28:55):
somewhere else, maybe you willnote, with the interview with
someone from the government.
My argument is the 2,000 cannotbuy you food, buy you medicine,
but as you age you are likelyto suffer some conditions and
(29:18):
non-communicable diseases.
How do you buy medicine, buyfood, accommodate yourself, and
even if you have a small houseor a house, let me call it house
how do you pay the bills?
Yes, life is really bad, yousee, for them.
Speaker 1 (29:44):
Yes.
Speaker 2 (29:50):
And it's a way to hold the government accountable.
Yes, it is.
You hold the governmentaccountable with that, and
especially when it is comingfrom UN.
When it is coming from UN, thenit is abiding document.
Yes, like they do in the UNCRPD.
Yes, yeah, every yeah.
(30:12):
You go there and you are ableto argue what have you done,
what have we done, and youcompare.
Then you can come out withsomething, some development, but
without the convention.
Specifically for us, it'sbasically looking at the issues
(30:37):
that are on hand when thingsbecome harder.
We have unique, unique problemswhich need a unique document
which can spotlight our issuessignificantly.
Speaker 1 (31:02):
Okay, so let's.
I love that we should end there, but I want to ask you.
I want to ask you because Iknow you're very busy
campaigning for universal accessto health care.
So I want to leave you withoutgiving you the opportunity to
lift your voice around thisissue, and I know what a huge
impact it will have on olderpersons.
(31:23):
So I want to make sure that wehear what you have to say about
this.
Speaker 2 (31:27):
And remember I have told you, when they have a small
pension, no matter how small,you cannot benefit from the
social protection.
And you realize, even those whoare adequately pensioned, the
people who have what they wouldcall good enough not adequate
(31:50):
but good enough would realizehere, because of lack of
employment, which could be theworld over, no matter how old,
what the parents are getting isthe money that is sustaining the
families.
Getting is the money that issustaining the families.
Like, if the children have beeneducated to university level,
(32:16):
higher education, and theycannot get a job, what happens?
They are living on your pensionbecause, unlike other places
maybe, where the youth who havecompleted education they have
education without money would besupported by the government, in
(32:39):
the developing countries we areyet.
And so the same parents withthe ritual pension or with the
pension that they are getting,then they support them and so
they go out.
They are students of livinganyway.
And then for some, like me, Idon't get a big pension.
(33:04):
And then when you come in, youalso realize you have a mother
to take care of and you are notworking.
You are no longer working andit becomes your responsibility.
There are those older peoplewho have also been left with
(33:24):
their grandchildren, been leftwith the grandchildren.
Like you remember, during theHIV so many families were left
with their parents, so grandmaswere left with the children.
So what do you give them?
$2,000 per month.
What can they do with that?
(33:45):
It's good, but little.
And yet we cannot complain somuch that it should be increased
, because there are many moreonly a small part who are
benefiting it.
So the others are not.
(34:06):
Many more are not.
So you would rather the othersalso got something little before
it can be increased.
So the hospital bills becomes amatter of fundraising.
There is a new system which weare yet to understand, changing
(34:30):
from National Hospital Insuranceand changing to Social Hospital
Insurance Fund.
It is yet to take place, but ifit did, if it was to come and
take care, especially on chronicdiseases, most of them
(34:51):
non-communicable, it would helpa lot.
The older person I want to saywe are becoming burdensome to
the families and we don't wantto die very quickly.
The older people here don'twant to go to the homes.
You know they want to stay withthe children.
You know they want to stay withthe children, no matter how
little they are getting.
(35:12):
My mother had told me if I tookher there, things would be very
bad.
She didn't want to go, so wehad to stay with her.
The only good thing is I have asister, a younger sister, and
her children, who are verylovely.
They will remain.
So if I was to engage a house,help or live in person with the
(35:35):
little money that I get, youknow and I'm no longer now my
hands are not very strong now tocontinue making the bids when I
have, if I get an order, I getsome people to do it.
Then I pay them something andget something from the work, but
(35:58):
not physically doing it like Ido.
I don't know whether I havesaid anything you have.
Speaker 1 (36:06):
You have.
I mean, it's well.
Your voice is strong.
Even while your hands are notas strong as they used to be,
your voice is still strong.
But you know, I hear whatyou're saying, jane.
It's as we get older and as weage.
You don't want to be a burdento the family.
(36:26):
You really don't want to be aburden to the family.
Speaker 2 (36:28):
You really don't want to, but it doesn't matter.
But like what I?
Maybe I should have told youjust a little that when the
family separated I had to helpmy mother educate my siblings
All through and unfortunatethings happening thereafter my
(36:50):
brother was my wife and then Ihad to bring up the daughters.
So I'm not complaining myself,but I did a lot of work to earn
respect.
Respect, yes.
That is why maybe I'm lookedafter and I'm able to stay with
a sound mind about other things.
(37:11):
But these days I really have.
I used to board my vehicle on myown with crutches.
Both places Go to get childrenfrom the slums around here, take
them to Pisa, I suppose, lookfor schools, look for sponsors
(37:33):
they're still coming, so theystill call.
What I do is I don't go much.
They call and when they getsome wheelchairs and there are
some people who need them olderpeople instead of me going,
their people will come for them.
(37:54):
As long as we can keep a record, I have somewhere where I keep
them in a certain faith-basedinstitution and there I'll keep
them and send somebody thereRight On record and they take a
wheelchair and they go.
(38:15):
That's why you don't see mepresenting the wheelchairs and
the way I was presenting, I wasfeeling like these people may
not want to appear somewhere andI may not get them to give a
consent for their appearance.
Yes, yes, did you know?
(38:35):
I went to Geneva in 2022, themeeting I'm talking about, I had
gone for the wheelchairguidelines provision, a
technical meeting.
That's the one I was trying todo.
Speaker 1 (38:49):
Oh, that was the meeting.
Speaker 2 (38:51):
Yeah, because I had done all throughout almost the
whole year.
I was in the guidelinesdevelopment group for a whole
year, then we went to Geneva nowfor the check-in for meetings
and now there is a document forthe wheelchair provision which
is being implemented all over,and I feel good.
Speaker 1 (39:16):
Yes, you should, and I'm very grateful for everything
I just recently.
Speaker 2 (39:23):
I'm going to speak to a group.
They will be having a walk toraise some funds for a therapy
for speak to a group.
They will be having a walk toraise some funds for a therapy
for children with disabilitiesand they won't be able to be a
speaker.
They are less speakers.
I'm telling them I don't havemuch money that I can talk, so
(39:45):
as long as I can get there, Iwill go and encourage them.
Things are going on.
My hands are not strong, buteven my legs they were
struggling to do it.
Speaker 1 (40:01):
You have an extraordinary life of adapting
and finding a way through, jane.
If one thing doesn't work, youclearly try another until you
make it work.
This is very clear from yourstory and I wonder, so let's end
this way.
If there are other advocates orolder persons living with
(40:21):
disabilities and they werestruggling as you have had to
struggle and as you've seenothers struggle, and they don't
know anything about all of thisadvocacy to get a UN convention
on the rights of older persons,they don't know anything about
it.
What should we say to them?
(40:42):
What would you say to them, toolder people who are having
their own struggles and dealingwith ageism and dealing with
lack of accessibility perhapsthey're living with disabilities
what would you say to them?
When we talk to them aboutworking towards a convention,
(41:03):
what message would you send tothem?
Speaker 2 (41:06):
What message would you send to them?
I would tell them the UNConvention.
I think one of the things weshould do is create awareness.
What is it?
What is that convention?
Awareness raising is key.
When I make the meetings, theones that I used to either tell
(41:31):
people to donate and I don'twant them to give me money what
I do is, if there is a childthat needs a wheelchair, that
child will be sent to theassociation for Physical Disease
, kenya.
What is it that is required?
(41:51):
It is assessed, the intent.
Then this donor will pay, right.
So because I don't have moneyon me, right?
So what I'm saying?
I think the issue is awareness.
(42:12):
What is the convention?
That one?
They don't know.
And I started a group for olderpeople, but there is only one
man and nine women, including me, and they meet outside.
(42:32):
Here.
I have a place where they canmeet at some seats and I don't
charge them the value, butbecause the seats are not mine,
they are for another group Thenshe will sit in the chair.
(42:56):
So when they started gettingtogether, then I have the
opportunity to tell them whythey should fight for their
rights, and I'll tell you whenthey come here.
We don't want to stay here alltime, make some tea and play
(43:19):
together when there is one witha bad thing.
Like you, put three togetherfor January, february, march,
then they can do in March.
Like you put three together forJanuary, february, march, then
they can do March together, abirthday for all of them.
And they buy the cake and theycook some food and some meat and
(43:44):
we eat.
So what I'm saying women canfight and men can fight for
their rights.
What surprises me is that olderman says the others tell him
they are not old.
Is that ageist or what is it?
(44:07):
They are not old.
They are not old.
Is that ageist or what is it?
They are not old.
They are not old, they are notyoung.
We call it golden light aging.
Golden light aging.
I love that.
When they come together, theyhave a lot.
We are given assignments.
You are going to find out aboutthe health system status.
(44:34):
Some of them are stored.
That is your assignment.
Come and tell us, come andteach all of us how to use some
digital skills, and they comeand do it.
Another one is to teach us howto exercise when we get there.
(44:57):
Yeah, there is prayer, there isBible reading, there is some
exercises.
Before you start the meeting andit's not only a meeting you do
what you call table banking.
Table banking, the amount isnot the matter.
(45:21):
We are not meeting here becauseof money.
Just recently I was interveningfor another lady who had lived
in the USA for a long time andkind of she had lost the friends
she left in Kenya and on thisside she felt very, very lonely
(45:44):
and I had to start looking forwho is staying near her.
What is it that they can bedoing together?
And because money is not anissue to her, she was not
interested in the bubble, butshe was interested in having a
(46:09):
group to meet and I'm now gladshe's meeting with other friends
, in fact in two churches.
Now, If your problem isisolation and they're not in
money, you don't have to comewhere they are giving a table
(46:29):
bouncing of $20,000.
You can read your Bible, youcan do the other things,
exercises and she is feelingvery good.
She has joined what they callBSF Bible study, kindf Bible
study, kind of Bible study,fellowship and she's doing it.
(46:54):
And now I'm so sure that shewill no longer stay and tell me
that she's doing nothing Right.
Of course I have another one whois also not able to do anything
because of rheumatism,arthritis, and that one is
really.
(47:14):
She's not happy because shecannot do much and she's not
able to move.
And I also got her a wheelchairso that if she gets somebody by
chance, she can be goingoutside to have some sunshine.
So we are doing a lot of work.
(47:37):
You take people where they findinterest.
That older person must havefreedom.
What is it that you can do best?
Have freedom, what is it thatyou can do best?
And I think it all goes aroundawareness.
Who are you?
What can you do?
(48:01):
Should you just sit and die?
You may not be able to do thethings you used to do when you
were young, but that doesn'tmean you sit down.
You must refuse.
Remember these ones who getvery sick and they can't do
anything.
Then they don't have a choice.
I don't know.
Something needs to be done.
(48:21):
The rights need to be there,some support, but better still
is that person can support himor herself.
Because I always imagine if Ididn't have a house to live in,
I would feel terrible.
Speaker 1 (48:42):
Yeah, it's a combination, right, it's a
combination of the dignity andthe autonomy and the rights.
It needs to go from one end allthe way to the other, from the
personal all the way to thesystemic support.
I hear you.
Yeah, those are the things.
Speaker 2 (49:00):
There's a lot to talk .
I can talk the whole night, butit's late here.
Now it's late.
Speaker 1 (49:07):
I have to let you go.
I could also listen to you forhours, Jane.
You know what?
Let's just agree this will bethe first conversation and when
the time is right, we'll havemore.
So much to learn from you.
Speaker 2 (49:19):
Just let me know.
Thank you also for being there,because we may want to shout
and our voice doesn't get veryfar.
It may be like the organizationI have is a CVO community-based
organization, so you may shoutwithin the walls but don't get
(49:45):
very far within the walls butdon't get very far.
So when you have taken theburden to voice the voice for
the voiceless, then I'm veryexcited and I'm happy, very,
very thankful.
Speaker 1 (49:58):
Thank you, and I know that we all feel very much
gratitude, much gratitude foryou and all you do, and we will
shout from the rooftops, jane.
We'll amplify as much aspossible.
Just know now you have a chorusof voices with you.
Thank you, thank you so much.
Have a wonderful night, janeBless you.
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