0:01

Hello and welcome to Axschat. I'm delighted that we are

0:02

joined today by Anjali Vyas,

0:06

who is joining us

0:06

from the Punay chapter

0:09

of the Multiple Sclerosis

0:09

Society of India.

0:13

Great to have you with us. I know we were just chatting

0:14

before you came On Air.

0:17

But please tell us a little bit

0:17

about your background

0:21

because it's interesting and the

0:21

work you're doing as well.

0:25

So welcome.

0:25

It's great to have you with us.

0:28

Thank you so much.

0:28

My name is Anjali Vyas,

0:33

and I'm a person

0:33

with multiple sclerosis.

0:36

I have been living with this invisible, neurological,

0:37

autoimmune disorder, also recognised only

0:39

a recognised disability

0:42

in the Disability Act in India,

0:42

since the past ten years.

0:47

The recognition of multiple

0:47

sclerosis in the Act

0:49

was done very recently,

0:49

not very recent

0:53

but in the year 2016. And it's actually win

0:55

for our community

0:57

because up until 2016,

1:00

for a person with multiple

1:00

sclerosis to come out,

1:02

especially to have invisible symptoms has been a big challenge.

1:05

And now to be recognised

1:05

as a disability has actually,

1:09

at least given us some rights, to which we at least

1:11

bring more awareness.

1:14

I am a chemical engineer

1:14

by qualification

1:17

and an ITLTS trainer

1:19

which is an English

1:19

language trainer by profession.

1:21

I'm also the cofounder

1:21

of newly registered organisation

1:26

called Believe in the Invisible that advocates for people

1:29

with invisible disabilities

1:32

and their communities

1:32

through storytelling.

1:34

So in addition to my role as the

1:34

joint secretary of MS society,

1:41

Punay chapter, I am also working

1:41

in the area of in general

1:45

advocating for people with

1:45

invisible disabilities in India.

1:49

Anjali, can you share

1:49

the story

1:52

of your initial symptoms

1:52

and diagnosis in MS

1:55

and how that ended up changing

1:55

your life and career path?

2:00

Oh wow, that's a very nice questions. I always like to answer that

2:02

question when I'm asked that.

2:06

So I was in my last year,

2:08

which is like the founder year

2:08

of engineering,

2:11

like that the last leg. And I was just a month away

2:12

from taking my exam,

2:16

which is actually the most

2:16

dreaded semester you know,

2:20

we call it the semester. And I experienced some pain

2:21

in some optic nerves

2:25

in my right eye,

2:25

optic nerve in my right eye,

2:28

it was very unusual for me

2:28

to experience that.

2:30

I thought that perhaps it is

2:30

an infection or conjunctivitis

2:35

or something that maybe

2:35

infectious in nature.

2:39

From the outside,

2:39

I looked 'normal.'

2:44

There was no significant

2:44

difference on my face

2:46

or in my body for that matter. So for the first few days

2:48

you know, I had that pain,

2:52

that tingling in my optic nerve

2:52

and of course,

2:54

when three days passed and I realised

2:56

there was something wrong

2:59

when it comes to my vision because it got a bit blurry

3:00

in my right eye.

3:03

It appeared that something

3:03

has perhaps pricked my eye

3:07

and that's the reason

3:07

why I can't see things clearly

3:09

but then because I could see

3:09

from other eye you know,

3:11

that is the funny part. There is something wrong

3:15

with my right eye.

3:17

But after four or five days,

3:19

it just so happened

3:19

that I was crossing the road

3:22

and I could not see

3:22

the truck coming by.

3:25

And fortunately I had my friend

3:25

who pulled me back

3:28

and save me from that terrible accident.

3:29

Wow.

3:30

I am really thanking her. That's when I realised that

3:32

my peripheral vision is gone.

3:35

I couldn't see the truck coming by and when I went

3:37

to the ophthalmologist

3:41

and complained the symptoms. He did all those

3:44

preliminary tests,

3:46

dilated my eyes,

3:46

had some tests run.

3:50

But even to him everything

3:50

appeared absolutely normal.

3:54

So he gives me certain medications, some eye drops

3:56

and asked me to come

3:59

if things don't improve

3:59

but after I few days

4:02

I realised that you know

4:02

I could not see clearly

4:04

because the vision was dropping. So when I went after a few days,

4:06

after my first check up,

4:13

he little a torch

4:13

in front of my eye

4:15

from which I could not see and asked me

4:17

a few questions to answer. And when he asked me

4:20

okay what you see,

4:23

I had no idea what was happening because I could not

4:24

even detect the light.

4:27

But imagine the extent of vision

4:27

loss in a couple of days,

4:31

just like that. It was very unusual

4:33

for a 20-year-old

4:37

to have that symptom

4:37

of vision loss,

4:40

with no medical history of any such condition

4:41

whatsoever and again,

4:44

it was the prime of my life right. And frankly at that age,

4:46

no youngster bothers

4:49

to even think about what

4:49

is wrong with their body right?

4:52

But unfortunately, I said,

4:52

I can't see,

4:56

I don't even know that you lit

4:56

the torch in front of my eye,

4:59

that's what freaked him out. But you know,

5:01

I really thank my God

5:04

and my stars that day

5:04

that he actually recommended me

5:07

to a neuropathologist

5:07

who ran some important tests,

5:13

critical tests

5:13

such as the MLI et cetera

5:16

that's when the demyelination

5:16

factor came into the picture

5:22

which ultimately was told

5:22

to be of multiple sclerosis.

5:28

And again, it's something

5:28

which is a tongue twister,

5:31

still today too.

5:32

I know that Debra

5:32

has got a question.

5:35

But for our audience really,

5:37

we might want to explain

5:37

what demyelination is.

5:40

Essentially, this is the sheath

5:40

around your nerves; right.

5:46

And MS starts interfering with

5:46

the sheath around your nerves

5:50

which is what then causes the problem. Debra, over to you?

5:55

Yes. And thank you so much

5:56

for first of all,

6:00

all that you're

6:00

walking personally.

6:02

I know that you said you had had a fellowship, a three-year fellowship

6:04

and towards the end the MS

6:08

started affecting your life.

6:12

I have a very dear friend of mine that has been diagnosed with MS.

6:17

And it also attacked

6:17

her eyes first.

6:21

And so it is a scary diagnosis.

6:25

And you don't know

6:25

where it will go.

6:29

And I know right now

6:29

in the United States,

6:32

Christine Applegate

6:32

who is a beloved actress,

6:34

a lot of people know around the world.

6:39

Yes.

6:40

And first of all, I was grateful that you took

6:42

something personal

6:45

and you made it

6:45

your advocacy goal.

6:49

You made it a way to help others. But I also thought it was

6:51

such an interesting point

6:54

that you said about

6:54

because once again

6:57

I live in the United States,

6:57

I'm a global citizen

6:59

but a lot of times there are things that I make

7:01

some assumptions about.

7:04

And one of those assumptions is that MS automatically

7:06

be included

7:09

in any disability

7:09

or legislation and of course,

7:12

I would be incorrect

7:12

by saying is that.

7:15

But one thing I would

7:15

want to ask you is why,

7:19

why is it important

7:19

for a diagnosis like MS

7:23

or any other diagnosis,

7:23

to be included in legislation?

7:27

I mean there's -- to me

7:27

there is so many reasons why.

7:30

But I, you know,

7:30

I wanted to ask you that.

7:33

And at the same time, I am intrigued

7:35

about how India once again,

7:38

we've had other

7:38

Indian citizens on

7:41

but as a reminder

7:41

to the audience,

7:44

India has a billion, almost five

7:44

hundred million souls, in India.

7:49

Right.

7:51

Here in the United States, we have 330 million Americans,

7:52

for example.

7:55

And I'm not but I'm curious

7:55

what India

7:59

is going to do

7:59

with all of these?

8:03

How is India going to shift

8:03

and change and value

8:06

all of the people?

8:06

And so, I was wondering

8:08

if you would just talk

8:08

about it from those angles.

8:11

Why is it important that we are

8:11

included in the legislation?

8:14

Why do we have to make sure

8:14

that people understand our lives

8:18

and you know we were diagnosed

8:18

with something like MS,

8:21

how does that change us,

8:21

how can you support us?

8:24

Just taking us from that direction?

8:28

One friendship,

8:28

but engineering,

8:31

when I was diagnosed with MS.

8:31

The fellowship was very recent.

8:37

So, I think

8:37

my very honest answer

8:41

as to why a condition

8:41

like multiple sclerosis

8:45

should be recognised

8:45

as a disability is

8:47

because what is not seen

8:47

is mostly not believed.

8:52

It's extremely important

8:52

that conditions

8:55

are not just multiple sclerosis,

8:55

I genuinely feel

8:59

that when we talk about

8:59

neurological conditions,

9:01

you know,

9:01

as a category in itself,

9:04

it's very important

9:04

for people to understand

9:06

that it's neurological,

9:06

it's not psychological.

9:10

It's not in my brains that

9:10

I'm faking my disability; right?

9:13

It's actually something

9:13

that is troubling me

9:16

to carry out my regular day

9:16

to day activities.

9:19

Now why MS was very important

9:19

to be recognised

9:23

is because the majority

9:23

of the symptoms,

9:26

the initial symptoms and the

9:26

challenges of multiple sclerosis

9:31

but they equally effect

9:31

the quality of life

9:33

of an individual.

9:35

Yes.

9:36

And the most importantly it is a condition that is diagnosed in the prime

9:38

of the life of an individual.

9:41

So younger girls are mostly

9:41

affected because of MS; right.

9:46

So when I was

9:46

planning my career,

9:48

I wanted to do so many things. Again, I don't regret my

9:50

decision of choosing my career,

9:52

but when I did it,

9:52

even that judgment of my life,

9:57

switch my track from something

9:57

to a different one.

9:59

So when we had say

9:59

that a country like India

10:03

which has got the highest

10:03

demographic dividend

10:05

in the world,

10:05

needs to have conditions like MS

10:10

recognised as disability

10:10

that people know,

10:14

that it affects the quality

10:14

of life of these individuals.

10:17

It's important

10:17

that you believe them.

10:19

We are not faking our disability. We only need

10:20

your support. And simply understanding

10:22

that you know,

10:25

even the disabilities

10:25

which are not seen exist

10:28

and that I might face

10:28

some challenge

10:31

at my birthplace for that matter, in terms of fatigue,

10:33

let's just say.

10:36

I'm severely fatigued some days. I just don't even feel like

10:38

getting up from my bed

10:40

and have a glass of water;

10:40

right.

10:43

And if I ask my employer to

10:43

given me certain accommodations,

10:46

like giving me flexible

10:46

working hours

10:48

or maybe getting me

10:48

a parking spot

10:51

in the way organisations

10:51

parking space,

10:53

I might not be believed

10:53

and perhaps we question that.

10:57

Why?

10:57

You look normal, you're healthy.

11:01

And don't worry, Anjali,

11:01

it's all in your brain.

11:03

Just be positive. I am positive. About you don't need

11:06

to tell me that.

11:08

Yes, I have been told

11:08

these many statements and advice

11:13

throughout my life and again,

11:16

now I don't blame them,

11:16

in retrospection.

11:19

I actually feel that you know, building awareness

11:21

is important than complaining and that's why I co-founded

11:23

this organisation

11:27

to build

11:27

greater awareness, yes.

11:30

I hope that answers your question.

11:32

That's a brilliant

11:32

response. That was brilliant.

11:36

Thank you.

11:36

Yes.

11:38

I think those issues that

11:38

you raised around lack of trust

11:44

and belief impact

11:44

huge populations of people

11:49

and it really is

11:49

that lack of belief

11:55

when people are asking for

11:55

accommodations in the workplace

12:00

is definitely, you know,

12:03

an area where we need

12:03

to educate more people

12:08

and really work

12:08

on the basis of trust.

12:12

People don't ask for things

12:12

for the most part

12:15

that they don't need. But there is that lack of

12:17

understanding still; you know.

12:23

And not just in India,

12:23

by the way, you know.

12:27

This is a universal thing

12:27

that people

12:30

with invisible conditions

12:30

get questioned.

12:35

So can I quickly add

12:35

something here, one sentence.

12:39

So in addition to all of that

12:39

that I just said,

12:42

it's also the stigma.

12:42

It's the shame.

12:46

It's also people's misbelief

12:46

that it is the result of karma

12:51

and especially when we talk about some of the very sort

12:53

of thinking society,

12:59

especially, I know

12:59

that such a society exists

13:02

everywhere in the world. But you know, I want to add

13:03

one experience of mine

13:07

that I was officering

13:07

a glass of water

13:09

to one of my educated

13:09

family members

13:13

and was hesitant of taking

13:13

the glass of water from me

13:17

because maybe it's contagious

13:17

and he asked me that.

13:22

Oh my God.

13:23

And when I say

13:23

educated family member,

13:26

I mean it; okay. So we used to have

13:27

conversations in science

13:29

and what not and the fact

13:29

he asked me that,

13:32

not just once but twice,

13:32

really made me work

13:37

even more hard

13:37

on this aspect of you know,

13:42

dismissing and busting the myths

13:42

around invisible disabilities.

13:46

Because as I said,

13:46

if it's not seen,

13:48

people feel it might be contagious, it could be fatal

13:50

or genetic; right.

13:58

But in your

13:58

experience and you know,

14:04

based on your knowledge you know, of the social department

14:06

where you are,

14:11

do you feel that

14:11

there are many disabilities,

14:15

who are not

14:15

considered officially

14:18

as disabilities in India?

14:18

Is that -- can you assume that?

14:23

Yes.

14:23

Definitely, we can assume that.

14:25

Because, you know, yes?

14:27

Because something

14:27

that we discuss in this forum

14:30

for quite some times is about the number

14:32

of people with disabilities;

14:35

no, you know, how many people

14:35

we have around the world.

14:38

Right.

14:39

And my question to follow that is that in fact that

14:42

disabilities is not recognised,

14:50

it somehow creates a problem

14:50

here because in the end,

14:55

there are a huge number

14:55

of people out there,

14:58

who even if they have a disability, they don't show up

15:00

in the statistics.

15:02

And what -- you how this impact,

15:02

society itself, families,

15:07

and now this impacts

15:07

the way that our government

15:10

puts together policies

15:10

to support this.

15:15

Great point.

15:17

Yes, yes.

15:17

There is definitely a challenge

15:20

when it comes

15:20

to Government’s intervention

15:25

when it comes

15:25

to having this data.

15:28

So the data has been

15:28

the biggest problem of all times

15:31

and I'm sure it's not

15:31

just in many other countries,

15:34

but for the disability’s communities, it had been

15:37

a constant challenge. I can very happily say that

15:39

things are improving definitely

15:42

because the problem is

15:42

when the data is collected

15:45

it's a ten-year-old census data.

15:45

Right?

15:49

But the survey that was

15:49

conducted in the year 2011,

15:54

the results or the information

15:54

of that census survey

15:58

has been released last year. So this is an entire

16:01

ten-year gap,

16:03

actually somewhere is

16:03

disadvantageous to our community

16:08

because, then if there are

16:08

no members, there is no data.

16:11

How would we advocate

16:11

for the policies

16:14

to be even implemented

16:14

for that matter; right

16:18

and when you asked me that you know are there

16:19

any other disabilities which might need

16:21

that recognition or not.

16:23

There are many. So when I say chronic

16:25

neurological conditions,

16:27

I'm happy that you know, some of the policies

16:28

in sections in our Act,

16:32

have been recently revised,

16:32

very recently.

16:35

A month, two months ago. And I'm very happy to see

16:37

that they have considered a lot of other conditions

16:39

as well.

16:41

Of course, they cannot come up

16:41

with exhaustive list

16:43

but at least open

16:43

to accommodating

16:46

and adding new disabilities. But again you cannot

16:48

just categorise the people

16:50

into one set. There are also people with

16:52

congenital heart conditions.

16:55

It is invisible, when we talk about

16:57

inflammatory bowel syndrome.

17:00

Anything that goes below

17:00

your heart and chest,

17:02

even that's

17:02

something disabling.

17:04

So we need to come up with

17:04

even these areas and sections

17:07

and I am sure

17:07

that we are going to work

17:10

on these aspects as well. But coming back again

17:11

to the fact

17:14

that I think you were

17:14

asking about the data; right?

17:17

How important it is.

17:19

So the challenge has always

17:19

been collecting the data.

17:23

Last year, there was this big --

17:23

I won't say a fight,

17:27

but, yes a struggle for our community, where a very, one of

17:29

the very important service

17:32

that happened in India

17:32

is National Health

17:34

and Family Welfare Survey.

17:34

NHFWS.

17:38

That's one survey that is

17:38

conducted in every small town

17:42

or a village in India,

17:42

in order to collect information

17:44

into how many people

17:44

live of what background,

17:48

the ages et cetera. And up until the last year,

17:49

whatever number of surveys

17:52

were conducted had a question of

17:52

disability added in that survey.

17:56

Unfortunately it was dropped out

17:56

in the recent survey

18:00

that happened last year.

18:00

It had been a bigger fight

18:04

because whatever service

18:04

was conducted in India

18:06

irrespective of whatever sector

18:06

you want to do it,

18:10

I personally feel that

18:10

the question on disability

18:13

is something that

18:13

should be a mandatory one.

18:16

Whether you're you know, considering doing the survey

18:18

on employment scenario,

18:21

whether it is related

18:21

to education.

18:24

Even for that matter in climate

18:24

change in gender and people,

18:28

having a question delicately

18:28

on the data of disability

18:32

is something that

18:32

I strongly feel must be included

18:36

and I can see slowly things

18:36

changing in our countries.

18:39

I am sorry I missed

18:39

any part of your question.

18:43

I've been looking

18:43

at different questions

18:45

that are being asked

18:45

in census around the world

18:48

and I've seen that

18:48

sometimes from you know,

18:51

one census for the other

18:51

the question changes.

18:54

Yes.

18:55

And suddenly people with disabilities, they just disappear, in relation

18:57

to the previous census

19:01

because the question

19:01

was asked differently.

19:04

Sometimes the question

19:04

is some ambiguous

19:07

that people don't really know, am I, am I not.

19:09

You have that dilemma.

19:12

And on the other,

19:12

like you were saying,

19:15

you were talking about the story of giving a glass of water

19:16

to a family member,

19:20

is that sometimes

19:20

census documents

19:23

are being filled

19:23

in by other people,

19:25

not directly by the person

19:25

with disability.

19:28

So people might end up

19:28

hiding a familiar member.

19:33

Imagine if you

19:33

have hidden disabilities,

19:36

it's all the more

19:36

compounding you know.

19:39

It's actually something

19:39

that people feel shame for.

19:42

I can see that shift

19:42

in the mindset. Yes.

19:44

But I think you have you know

19:44

a walk a path

19:48

to walk to get there still.

19:51

But, yes, especially when we talk about the percentage

19:52

of women with disabilities and other communities

19:54

as well. Not just women but even our

19:55

trans community for that matter.

19:58

We need to have the disability data. You know gender-based type

20:01

of disability etc.

20:05

I feel so, yes.

20:07

And also, I know

20:07

that I am being naïve,

20:11

but I'm I don't know,

20:11

I guess I'm looking for a time

20:15

when we do not decide

20:15

that people get,

20:19

that they are born with disabilities or they acquire disabilities,

20:21

because karma

20:25

or because religious beliefs

20:25

or other ridiculous things

20:30

because,

20:30

even if, in another life,

20:32

I stole horses and so,

20:32

I was a horse thief, what?

20:37

It doesn't even, come on, I need to be responsible

20:39

for this lifetime

20:44

and then we have karma

20:44

and that kind of stuff

20:47

and then in some of

20:47

the African countries,

20:50

you know,

20:50

some of the witch doctors.

20:54

It's just really,

20:54

really chilling.

20:57

The stuff that people

20:57

have to deal with,

20:59

just because they are normal

20:59

human beings that might have MS.

21:03

And they are normal human beings that might have

21:05

a blood clot disorder like my daughter, Sarah.

21:09

That has done, it has really,

21:09

really hurt her body, a lot.

21:14

Her down syndrome was nothing

21:14

down to this blood clot disorder

21:18

what it's done to her. So I just, I know

21:19

it's more than having empathy.

21:24

But there are

21:24

so many problems

21:27

associated with

21:27

disability inclusion.

21:30

And us even being

21:30

accepted in society,

21:33

it's just sometimes

21:33

it just feels like

21:36

it's too big

21:36

to wrap your head around.

21:38

So I guess I'm very grateful

21:38

for leaders like you,

21:42

that are saying well, I am doing it, I don't care if you all like it

21:43

we are going to do it.

21:46

We are going to talk about it. And that's another thing

21:47

about doing Axschat.

21:51

We have been doing this

21:51

for ten years.

21:53

And at first we are were really good about sticking to

21:54

the word accessibility

21:57

and then we realised that

21:57

word accessibility is so big

22:00

and this is really about -- we had a guest on a couple

22:02

of weeks ago Tomas Babinski,

22:05

and he said, I'm not going to use the word accessibility anymore,

22:08

I'm using the word inclusion

22:08

because it really is --

22:12

I mean, you know,

22:12

it's a tough diagnosis, MS.

22:17

And it's a scary diagnosis because we don't know what is

22:19

going to come in the future.

22:22

That's -- and that's for,

22:22

for society on top of it

22:27

treat you that you do not matter

22:27

and you're less than human.

22:31

It hurts us so much. Which is another reason

22:33

why we have to get to together.

22:36

Which is what we are doing here. I just wanted to state that.

22:38

I really appreciate it.

22:41

I've talked it before,

22:41

and Antonio triggered is,

22:48

I know there was a census that was being

22:49

done years ago in Panama

22:51

but it's probably ten

22:51

or 15 years ago.

22:54

And as we were going

22:54

into the countryside,

22:59

families that had members with

22:59

disabilities were heading them

23:03

because they thought the government was going to take them away

23:05

or hurt them or hurt the family.

23:09

And so they hid them so the government workers

23:10

could not see and so,

23:14

and often people

23:14

with disabilities,

23:16

especially people like

23:16

my daughter with Down Syndrome

23:19

or intellectual disabilities,

23:19

they are hidden at home

23:21

and they're an embarrassment to

23:21

the family and not allowed out.

23:24

I am going to get on

23:24

my soap box, no, I'm not.

23:28

So I know here in the United States, I'm always talking with me

23:29

fellow Americans.

23:33

It's like, you all don't

23:33

understand it's bad here.

23:36

But you leave our borders and it gets really bad

23:37

from our community. That's why we are

23:39

stronger together.

23:42

But I just really appreciate

23:42

your work, Anjali,

23:45

I really do you mind

23:45

talking a little bit

23:47

about the fellowship you had?

23:50

Yes, sure. The fellowship was announced

23:52

by this organisation

23:58

called the National Centre

23:58

of Promotion of Employment

24:00

of disabled people. It's one of the leading

24:02

organisations here in India,

24:04

based in New Delhi, the capital. And it invited people,

24:06

young people or young adults,

24:13

people with disability, young

24:13

with people with disabilities,

24:17

to actually make the New

24:17

next Gen leaders

24:21

in the disability sector. And around 25 people or 25 young

24:22

leaders in disability sector,

24:28

were selected in this fellowship

24:28

and I was fortunate

24:30

and I was really surprised I was selected and was one of the fellows.

24:33

And different fellows

24:33

living with different

24:37

kind of disabilities,

24:37

worked in different areas.

24:40

And the area I choose

24:40

was on invisible disability

24:43

because of definitely my lived experience that's the reason

24:45

I choose that aspects.

24:48

Secondly, is because

24:48

with the MS Society of India,

24:52

I have been the part of

24:52

the National Work Scene project.

24:56

We have been fighting

24:56

for the rights of people

24:59

with Multiple Sclerosis

24:59

in the area of the assessment

25:04

of the disability percentage.

25:04

So you have a catch here.

25:08

So in India, when we talk about

25:08

getting a disability certificate

25:12

or a unique disability ID,

25:14

in order to even qualify

25:14

for that,

25:16

you need to have

25:16

a proper assessment done.

25:20

And that has been done

25:20

by our panel; right?

25:23

And these panels are made in

25:23

different government hospitals,

25:26

here in India. They will make you

25:28

do certain tasks, you know,

25:30

get you or make you

25:30

undergo certain tests

25:33

and based on again,

25:33

the results of those tasks

25:36

and the tasks performed by these people they come up

25:38

the severity of disability

25:43

and then of course,

25:43

this percentage also, is then,

25:46

in that way,

25:46

quite instrumental

25:50

in getting people

25:50

the provisions under the Act.

25:55

So in order to away

25:55

a disability pension

25:58

that we call in India, right,

25:58

which I think, if I'm not wrong,

26:02

in the US you call it a PIP,

26:02

if I'm not wrong; yes?

26:06

Yes, yes.

26:07

I think it's part of that. So I was there in the US,

26:09

last year for a month

26:12

for the identity programme

26:12

by the US department of State.

26:15

So that's when I heard this term. So you avail of a pension

26:17

for that matter,

26:20

financial support with the government. You need to qualify save for

26:22

that matter 80% of disability,

26:26

only then you're entitled

26:26

to a certain amount, rights.

26:28

So for people with MS in India,

26:31

it was very tough to get

26:31

that assessment done.

26:34

Because as soon as I walk

26:34

into the hospital,

26:37

sit in front of the panel, the first question they will ask

26:39

is what is your problem?

26:43

You're normal. You're fine. You don't look disabled.

26:44

You don't need that right.

26:48

So this happens in various

26:48

parts of our country.

26:51

To me it did not happen

26:51

because then I was quite vocal

26:53

and I also actually

26:53

sort of intimidated

26:55

those people

26:55

when I entered the hospital.

26:57

I said here; listen, I know my rights. You cannot send me away, unless

26:59

you get my assessment done.

27:04

And if the doctors say

27:04

that I have say 20% disability,

27:08

I will go away. But you need to first

27:10

at least get me assessed.

27:12

You can't just send me away

27:12

because I look nondisabled.

27:16

Right?

27:16

So that's one challenge.

27:19

Most people with disability

27:19

and with MS,

27:21

it's very, very prevalent.

27:23

And we have been working in this area and that is what you know

27:25

inspired me work

27:28

in this specific area

27:28

of employment.

27:31

Because then once you get, you only in order to sort of

27:32

prove your disability sadly

27:35

you need

27:35

to show them a card.

27:37

I mean that's something

27:37

that is everywhere.

27:41

And in order to get that card,

27:41

it's a challenge.

27:43

So I thought that you know

27:43

maybe while my organisation,

27:46

MS Society of India is working in the very

27:48

assessment of these guidelines,

27:52

to get people assessed for

27:52

the percentage of disability,

27:55

I can you know parallelly work

27:55

in the area of employment.

27:59

And through my research,

27:59

I actually ran a baseline survey

28:04

which had around 128 participants. It was a Google Form survey

28:07

and I also conducted

28:07

a few interviews,

28:09

10 to 12 interview,

28:09

telephonic interviews,

28:12

with people with Multiple Sclerosis and a few of the blood

28:14

disorders in the community.

28:16

And in that interview I

28:16

definitely asked them questions

28:19

about what challenges do they

28:19

in regular day

28:22

to day life

28:22

and in employment,

28:25

what sort of effects

28:25

their working at the workplace.

28:30

Do they know what reasonable

28:30

accommodation means?

28:33

Because even a section

28:33

on reasonable accommodation,

28:37

having equal opportunity policy

28:37

in every organisation is a must

28:40

and that's in our law. And I was shocked to know

28:42

that 80% of my respondents

28:48

said that they don't even know that the thing called

28:50

equal opportunity policy exists.

28:54

Or that if matters, there's a thing called

28:55

reasonable accommodation.

28:58

Then I realised that okay,

28:58

we keep on complaining

29:01

that people don't know about it. But then even

29:02

the disability community here were unaware of their rights.

29:04

We can bridge that gap together.

29:08

So it's important that we,

29:08

you know

29:11

while doing the sensitization

29:11

awareness programme

29:13

and what not of the corporates, with the private

29:15

sector companies, here in India, it's important

29:16

that we also educate

29:19

their people on their own rights. Right, there were many other,

29:24

you know highlights

29:24

that actually shocked me.

29:27

Shook me, sorry. Where I came to know

29:28

that even corporate issues

29:32

were one of the challenges

29:32

as to why people didn't disclose

29:35

that you are disability

29:35

at the company workplace.

29:37

Most of these people

29:37

fear disclosing

29:39

and I know that some of

29:39

my people in my community

29:43

also the term disclosed,

29:43

because the term disclosed

29:46

is in a way sort of you know

29:46

an exclusion factor

29:51

after this we need

29:51

to set it down.

29:55

But then, yes --

29:56

I agree. So

29:57

I agree too.

30:00

A great friend

30:00

of our show, Kate Nash,

30:03

wrote a book about disclosure

30:03

which was called,

30:07

"Secrets and Big News," and you know, they were

30:10

talking about self ID,

30:13

rather than disclosure

30:13

because disclosure is usually

30:16

when you are telling

30:16

about something

30:18

that you have done is bad.

30:19

Yes.

30:20

And so there is a negative connation. And so I understand

30:24

why the disability community

30:28

quite often doesn't like

30:28

the term disclosure.

30:33

You know, I personally feel, personally there is

30:37

so much out there we don't even know

30:38

what is right and wrong.

30:40

I know, I know.

30:41

Frankly, I

30:41

am still learning,

30:44

I get so scared when I have

30:44

to talk to the LGBTQ community

30:49

sometimes it's so tough.

30:51

I am constantly you know

30:51

wondering in my head,

30:54

did I say something wrong

30:54

and it goes for even

30:57

for the disability community

30:57

for that matter.

31:00

Sure it does but I think that you know actions

31:01

speak louder than words

31:05

and certainly working

31:05

in an international context,

31:09

whichever we say will upset someone, which is the cultural

31:11

differences between people

31:13

in different countries,

31:15

mean that what is seen

31:15

positively in one country

31:20

is determined to be

31:20

negative in another.

31:22

So I am forever

31:22

walking through that minefield.

31:28

But I was really interested,

31:28

you know, in what you're talking

31:31

about in a sort of the whole

31:31

classification

31:34

and gatekeeping piece,

31:34

which was, it's a big issue,

31:38

people getting access

31:38

to the assessments

31:41

because that unlocks

31:41

the benefits and everything else

31:44

and if we look at the Indian

31:44

government statistics,

31:47

only 2.1% of the population

31:47

is classified as disabled,

31:53

which is minuscule. So, that comes down to what

31:55

is classified as a disability.

31:58

Some of it then is down to

31:58

the fact that people don't know

32:01

that they need to get

32:01

these declarations et cetera,

32:04

and then there is also the fear

32:04

that you just mentioned as well.

32:08

So people don't do it because they think

32:10

I would rather hide it

32:14

and not prejudice my chances

32:14

of getting a job

32:19

or staying in employment. So we had to do work

32:22

on multiple fronts.

32:27

How do you think

32:27

that you can influence

32:31

the government

32:31

on some of this stuff.

32:34

And Antonio has put in the chat that this doesn't

32:35

just impact England.

32:38

This is something that happens in multiple countries. But do you think that

32:39

with the MS society of India

32:44

and other OPD's that you can

32:44

start to influence government

32:50

to take sort of

32:50

broader definitions

32:53

and encourage easier access

32:53

to diagnosis and classification.

33:01

You know, this is very interesting because when I was presenting

33:03

my baseline study

33:07

to some of the stalwarts

33:07

in the sector,

33:10

I said my basic problem is with

33:10

the definition of disability,

33:14

because when we talk

33:14

about physical impairment

33:17

all together in the definition it limits the participation

33:18

and inclusion of people

33:21

with other disabilities.

33:21

So I was told by my senior,

33:25

you will have to challenge UNCRPD. I said I might as well do that

33:27

because there is a problem,

33:30

a definite problem

33:30

because we ratified UNCRPD.

33:33

But again it depends

33:33

on the country,

33:36

how they want to take

33:36

the definition of disability.

33:38

At least, In the US, we do not have an exhaustive

33:40

list of disabilities to follow.

33:44

Even Long COVID to my surprise

33:44

was considered a disability.

33:47

So I personally feel

33:47

that influencing the government

33:53

it's important that every stakeholder is actually included

33:55

in the conversation

33:58

than the decision-making

33:58

process.

34:01

Sadly, you know for the past

34:01

many years I didn't see that.

34:05

But now as I said things are improving and I witnessed

34:07

you know people

34:10

being the part

34:10

of the actual committees

34:13

in the government organisations

34:13

where decisions

34:16

on even legislative

34:16

accessibility or inclusion

34:20

for that matter, in general

34:20

are taken into consideration.

34:24

People affected by disabilities

34:28

and not just living with disabilities are taken into

34:30

these discussions; right?

34:33

There are many organisation, especially in India,

34:34

leading NGOs,

34:37

that are you know

34:37

having consultations early.

34:41

And some of these organisations are actually doing

34:43

a fantastic job. The organisation of which

34:44

I am the part,

34:47

under the fellowship programme they hold these

34:49

early connotations.

34:52

And in these early

34:52

consultations they invite

34:54

even the government officials

34:54

to be a part of it.

34:56

So that they get to hear what the disability community

34:58

at large wants; right.

35:02

So I feel that having

35:02

the last member in the family

35:06

in the discussion

35:06

is through inclusion

35:09

and that's when you can

35:09

actually make that change.

35:11

Because even people with disabilities can have

35:13

a biased opinion; right.

35:18

Because when I started

35:18

my fellowship and research,

35:21

I had a different reason

35:21

as to why I was doing that.

35:24

But the end of my research

35:24

I said okay,

35:27

I have been complaining all the why but my own friends do not know

35:30

that they have rights.

35:32

So it's important that

35:32

all these people are made

35:36

to sit in a circle together, have these opinions

35:38

placed on a piece of paper

35:40

and not just on the piece of paper but you know

35:42

regular conversations.

35:45

Every time, I am invited for any

35:45

you know significant celebration

35:49

or a day that signifies, let's just say celebrates MS

35:51

for that matter on 30th of May.

35:55

Whenever I'm invited on a talk on that. I always tell them, you know,

35:58

listen I'm available

35:58

throughout the year,

36:01

you can call me anytime to talk about MS, so why not only

36:03

on the 30th of May.

36:05

So conversations

36:05

on disabilities,

36:07

need to happen

36:07

every now and then.

36:09

Only then I think

36:09

it will be true inclusion,

36:12

not just on 3rd December

36:12

and of course

36:14

you need to value

36:14

their labels and terms.

36:17

So don't just call us. In fact, it's important

36:18

that you can also invite people

36:21

who are the caregivers

36:21

to these people with disability.

36:24

I think that there they are the

36:24

greatest worriers of all times.

36:27

They will have

36:27

their own recommendations

36:30

to provide to the government.

36:30

Right, if I cannot help a person

36:34

with a disability

36:34

any impairment opportunity,

36:37

let's just say a person

36:37

is totally bedridden

36:39

because of the severity

36:39

of disability.

36:42

Can't I help the next

36:42

family member caregiver

36:47

to find a good job

36:47

to at least have enough money

36:51

to make both ends meet, right.

36:53

And actually I want to work

36:53

in this project

36:55

as well which applying to work

36:55

on with the MS India,

36:58

which also work on empowering

37:02

and financially uplifting the caregivers.

37:04

Yes.

37:05

So we can take care

37:05

of our people

37:07

with disabilities as well,

37:07

if a person with disability

37:10

is not in a condition

37:10

to you know, work.

37:12

So it's important

37:12

that you see every segment

37:15

of our society with that lens. That's what I think

37:16

inclusion means.

37:19

We definitely need to take

37:19

a whole eco system view of this,

37:24

to be able to understand,

37:24

you know.

37:27

You don't just support the individuals; you support

37:29

the support networks. And you create something that

37:31

works for the whole of society.

37:35

A lot of the time we try

37:35

and look at an individual issue

37:38

and don't understand

37:38

the connectivity

37:41

and everything else

37:41

at systemic level.

37:43

It's been a great conversation. So good that we have

37:46

run a little over. So I do need this thank

37:47

our friends and sponsors,

37:52

Amazon and My Cleartext, for keeping us online

37:54

and captioned

37:56

and look forward to us

37:56

continuing this conversation

38:01

when we take it to social media.

38:01

So thank you so much.

38:04

Thank you, thanks a lot.

38:04

It was fun.

38:08

It was fun.