Uh, so I work for the International Disability Alliance.

I am the Senior Manager of Programs and Impact.

Uh, this International Disability Alliance is a Global alliance of organisations of persons with disabilities.

We have eight global and six regional members.

Uh, and we work in the Secretariat, which is based between Geneva and New York,

but I am based in Chennai.

I work from home.

So, at the International Disability Alliance, uh we do a lot of work around advocacy for persons with disabilities at the highest levels, which means at the United Nations.

Uh, we do work to ensure that all of the United Nations processes, including resolutions which are upcoming, human rights treaty bodies are all following the conventions on the rights of persons with disabilities.

My work is more field-based.

So, I am looking more at programs that we do with organisations of persons with disabilities at the national levels, at the grassroot levels, around building their capacity for advocacy.

This could be through trainings;

it could be through fellowships;

it could be through micro-grant programs.

There are different ways in which we support the growth of organizations of persons with disabilities to be able to take forth the advocacy that we do at the UN level, at the national level.

So, we do collaborate with organisations that are, besides OPDs.

So, for example, we have very close relationships with the International Disability and Development Consortium, which includes organisations like Sightsavers, CBM, ADD, uh, Light for the World, organisations like this, that work in the space of disability and development.

At the country level where we work, uh, we work through our members or we work through different programs and IDDC collaborations.

We also collaborate with the private sector, governments, UN agencies, INGOs,

even organisations working on intersectional issues, and invites them to make commitments on disability inclusion.

So, there is a space that's being created for all organizations that want to work on disability inclusion.

We are an organization that insists on um human rights-based approaches on the issue of disabilities.

So, our focus is encouraging organizations that um inculcate such practices uh within the work that we do as well.

Sure. So, I am a person with the psychosocial disability.

I have been living with mental health conditions since I was about 18 years old.

Um, I, when I, when I entered the disability sector, it was after a career in criminal litigation,

which I had to stop because I had an episode relating to my mental health condition.

The late Rahul Cherian, who had just founded the Inclusive uh Planet Centre for Disability Law and Policy.

Uh, Rahul was looking for someone to support his work.

Uh, particularly, he was working on the Copyright Amendment at that point of time.

But he realized that there was a lot of work to be done around disability inclusion in general.

I started working with Rahul.

Um, at the time I, I, you know, I did tell Rahul that I had a a a, you know, mental health condition.

But I myself did not know that what I had experienced was a disability.

It was only after I started working, I started, uh, reading the Convention on the Rights of Persons with Disabilities because that was a large focus of Rahul’s work, where I started reading, you know, things around, uh, especially around equal recognition before the law, supported decision-making.

And I realized that a lot of this had resonance in my life, moving myself out of the medical model, so to speak, where the focus was on how do I get better, how do I take medication, what should I be doing.

As opposed to looking at what were the ways in which I was facing barriers to my participation because of the inaccessibility of systems around me.

And it was a personal journey in that recognition.

So, my career in the disability sector kind of ran parallel to that.

Um, which is why I've spent much more time and uh effort in the cross-disability movement.

So, working across groups of persons with disabilities and working in the mental health movement actually came much later, like you could say like 4 or 5 years later

uh, when I started working more with organizations including Bhargavi’s TCI, uh, The World Network of Users and Survivors of Psychiatry, um, and other organizations.

So, both of these have kind of informed my journey in a way.

Um, but uh what it—my experience as someone with a psychosocial disability has informed a lot of my work,

though I do recognize that um I've had considerable privilege even as someone with a psychosocial disability,

and that I've, you know, I’ve always been able to get support around my condition.

I've um, you know, I even when it comes to my workplace.

For example, now I work with colleagues who understand what reasonable accommodation means for me as someone as a trainer,

as as someone, uh, now in a leadership position in the organization, right.

So, it is uh something which is a continuous journey, and I think we're all learning, and of course it does impact the work that I do.

But uh for me it, uh, it just creates one more lens in which I try and practice disability inclusion uh in the work that we do

uh, taking cross disability approaches and making sure that nobody's left behind.

For, for persons with psychosocial disability in general, uh, it's very hard to come up with a list of, you know, accommodations that people need.

It's, it's very dependent on the person, the barriers that they experience, uh the kind of support they've gotten.

Uh, it could change, you know, there could be a week which is fine,

there could be a situation which you cannot predict but you can find it to be extremely stressful

and that could, you know, sort of trigger uh, you know, a situation where you need support.

So, for me, uh the first thing was being in a team that understood what we mean by psychosocial disability.

And the fact that, uh, I may at any given point of time need support which could be that I need to disengage entirely from, you know, from from work for a bit,

or that I need peer support to go over something which may be relatively simple, but, you know, I do just need to talk it over with someone.

Uh, it is with regard to my working hours, because ensuring that that I get enough sleep, ensuring that I get enough time to exercise.

These are all really important components for me personally in making sure that, uh, you know, I am resilient enough, so to speak, uh, you know, in my day-to-day activities.

Um, it is also, I mean, we've had examples where we've been in high-stress situations,

and at times, just like sort of, you know, being able to just hold someone's hand, uh, or being able to sort of just ask someone for support.

Like, for example, in a training uh has been, you know, extremely impactful and has helped a lot.

So, it is uh something which is an individual um, you know, it's, it's, it's a decision-making process that we, we have as individuals.

I think the very first time someone asked me what I need as a reasonable accommodation is actually from the International Disability Alliance when I attended their training in 2015.

Um, and till that time, I had never thought about it.

Though I had lived with the mental health condition for that long.

I was like, what are my reasonable accommodations, you know, what do I need?

And I think that, that's a similar experience for a lot of people who've been more focused on how do I adjust myself for this group?

As opposed to, you know, what can we do different to make sure that you feel included?

Um, and that's uh so it like—

And like I said, you know, and this is really what the jurisprudence of the CRPD committee say as well.

That a reasonable accommodation is not like a one stage decision, it's a continuous process. You need to keep checking in with the people who ask for reasonable accommodation.

Um, you need to see what's working, what's not.

It's not like, if I ask for a particular setup, if it doesn't work, they're like, well, you asked for it and now you have to deal with it.

And that's true for all of my colleagues.

Um, I'm very proud to work in an organization that employs many people with disabilities.

My entire team are persons with disabilities themselves.

Um, and for us it has been, you know, even with people who have impairments, such as, you know, visual impairments uh where you think that, you know, technology can solve most, most situations, there's still a need for reasonable accommodations.

And it's a conversation that we need to renew at every, you know, whenever it's necessary.

um I think that when someone experiences uh, you know, uh when they experience—

it could be distress, it could be uh, you know, anxiety that goes beyond just being,

it's not just about being like stressed for an exam or something, like it's much more than that.

Um, you know, it's, if it's in a way that is kind of, almost, you could say it, it really interferes with uh the way things are right now for you, like whether you're a student or whether you're working.

Uh, it's really important uh that we have the language to sort of talk to the people around us

to say that, look, uh, you know, I have a certain something's happening to me right now, and I need support.

And I think that, you know, there's a lot uh, you know, there's a lot more awareness than there was when I was growing up, for example.

And, uh of course there's a lot more, you know, it's, it's almost like there's, there's an industry now around mental health.

Um, so there are a number of websites that kind of offer support.

Uh, there are number of websites that offer, like, linkages to counselling or, you know, other kinds of um resources.

Where there could be write-ups, it could be videos, and I think that's something which is, which is really great.

Because people get more information and information is power.

So, persons with psychosocial disabilities, um, are not.

I mean, there's a lack of awareness that, we can ask.

For, uh, for example, you are a student and uh, you know, you are experiencing distress.

Uh, the services for students are very limited, and I think that's very evident for us when we see kind of uh many cases of people in on student college campuses expressing distress.

Um, often uh having no support systems around them.

So, building those support systems are very important.

Uh, it's not like there is a specific vulnerability in college campuses, uh or in the IT sector.

It could be anywhere.

So, it's really important that we build resources around ensuring that people can get the supports that they need.

Now, are these supports only medication? They aren't.

Because, I mean, there is enough and more information out there.

There is research to show that, in many cases, medication is not more effective than um other forms of support, which include, you know, access to good nutrition or, uh you know, elimination of, say, the discrimination that one experiences.

There's no medication that you can take that will make the problems or the issues that are leading to your distress go away.

So, which is, and this is really important because we, we need to move towards a more um—

When we talk about a human rights approach to people with psychosocial disabilities we're looking way beyond medication.

Uh, some of the most effective interventions have been around addressing homelessness;

Uh, have been around ensuring uh social protection support;

Uh, ensuring that people have access to family care.

Uh, you know, that people are outside isolating situations.

So, it's really important that when we look at what kind of interventions people with　psychosocial disabilities need, you take that holistic approach.

And that the focus is not just on one thing.

Medication has helped many people, medication has also not helped many people.

Medication has actually made things worse for a large number of people.

I'm not here to make any value judgment on any of this,

but just to say, that it's important that every person charts out their own journey and the

supports that they need.

Uh, and there's not one solution possible.

Like, often when people report distress, they're like, ‘hey you should do yoga.’

Uh, I have a friend of mine who says that, for her, yoga never worked and yoga doesn't work.

Uh, so we, we have to be very um, you know, it's so it's important that people decide what works for them.

But people cannot ask for something that they don't know exists, right.

So, it's like uh, for example, I'll take my own example, I didn't know that peer support was an important option for people with psychosocial disabilities.

And I didn't get access to peer support until I met Bhargavi, until I was, I met the global movement of persons with psychosocial disabilities

So, it's really important that we have uh awareness and we have options.

And that people who are experiencing um, you know, that they cannot do their work or attend classes or whatever it is, as they did earlier, that they get the supports that they need to be able to participate.

Because far too many people just end up dropping out of the workforce, they end up dropping out of college, um, because they cannot cope, so to speak, with the load.

But in actuality, had they been given kind of accommodations to be able to participate, it would have been quite different.

I mean there's uh a really great example of uh that that we know from, from the field of a woman who was employed in an organization and she was taking medication which made her sleep quite deeply.

She couldn't get up in time to join office at 8:00 in the morning.

And the accommodation was just that she'd be allowed to come in a little bit later.

But, you know, she kind of caught up with the work that she was doing.

So, Covid has of course shown us many ways, that the workplace, that the education space

is suddenly adaptable.

Uh, people can find ways to uh, you know, make things work.

So, it's important that we keep leveraging uh, you know, like the adaptability that is possible.

Uh, within a particular, within a given situation, to enable people to stay connected—

whether it's the workplace, whether it's the the the schools or colleges or what have you that they are a part of—that's very important.

People with these conditions, when they disclose them, uh that can have consequences.

So, when you ask for support, you do have to disclose your condition.

But disclosing your condition can lead to other consequences and this is a paradox that we need to address.

I can tell you from my personal experience, that being a person who was on psychiatric medication, uh person who has, you know, had had mental health episodes.

I found that this most striking when I was pregnant.

Uh, because when I was, when I was in my, when I was in early pregnancy, when I would go and speak to different medical health practitioners.

Uh, you know, a lot of them, as soon as I said that I was a person uh who had mental health conditions, um, you know, they, their reaction was, you know, we don't know what uh the medication could have done, uh maybe you need to terminate the pregnancy.

We don't know, uh maybe you need to get some more testing because we don't know what impact this would have had on the foetus.

Uh, when I was um, you know, in I was 8 weeks pregnant uh with my son who's now 7 years old.

Uh, and I had some, I had bleeding, like it was just very random and uh sudden and I went to a hospital.

Uh, the hospital that I went to was the same hospital that I was already registered in because I was consulting their psychiatrist.

Um, and, you know, once you you enter the hospital, they always want to know, are you registered, who are you registered under.

Very quickly, the hospital you know till, you know, i went in uh everyone was very empathetic, everyone was very supportive, um everybody was very focused in the emergency ward on getting me, you know, a a check-up and and a scan and what have you.

But the minute I disclosed that I had been in this hospital before, to consult with the psychiatrist, the attitude of everyone changed.

So, it was very, I mean the the doctor on call asked me. She was like, how do you know that you're pregnant.

And I was like, well how does, how do people know, you know they know it through, you do a test.

And, you know, it was amazing that everyone's attitude completely changed.

Um, and I this is not uh you know, I was fortunate because again I had the privilege to be able to look for an ObGyn who was supportive.

Um, and who did not get, you know, unduly phased with this.

She was more concerned that I would uh develop postpartum depression as opposed to everything that had come before that.

You know, a lot of women uh with psychosocial disabilities are actively discouraged from, you know, having children.

Uh, we know that uh, you know, like it is a ground for divorce, of course we know that, which is uh quite heavily stacked against women.

Uh, there's, there's a lot of research on this as well uh that women—very often men file

divorce petitions against women for being of quote unquote “unsound mind”.

Uh, many women could lose custody of children uh, you know, because of mental health conditions.

So, having a mental health condition makes you vulnerable to all of these things.

Um, but then because of this we don't disclose, which means that we can't get the supports that we need.

And all of the, the things that we do for support are very much limited uh to what are quote unquote “acceptable”, right.

And I think that this is something that we do need to address.

This works in different ways, we know that it happens in the workplace as well.

Uh, I remember cases because I'm a lawyer, um, after the disability law came into force.

Uh, there were multiple cases uh that people were raising about, you know, disclosing to their employers that they had mental health conditions.

And then suddenly the mental—suddenly the employers were reluctant to give them any responsibilities.

I'm aware of a university in which a woman, you know, disclosed that she was feeling suicidal because she was feeling depressive.

And the reaction of the authorities were that she needs to move off campus because they weren't willing to take responsibility for her.

So, disclosure leads to consequences and the attitudinal barriers that exist against people with psychosocial disabilities are still very high.

And that is something that we actively need to address.

Um, that you know people with psychosocial disabilities are not dangerous.

Uh, they are not um, you know, there are different misconceptions associated with different diagnosis and cinema doesn't make it better.

Uh, you know, most, many of our films have antagonists with mental health conditions uh which bring back all of the stereotypes um possible.

Uh, and we need to understand that like, you know, there is no um, that all of these are exactly that, they're all misconceptions.

And they do—they don't do enough to address the barriers that people with psychosocial disability face.

I'm not against cinema and portrayals, it's just that I don't see an equal number of people in empowering situations who have mental health conditions.

Not everybody who has a mental health condition will recover.

I think that's another thing, we don't have uh there's there there's no cure, often.

It's just that we, this becomes a part of us.

It is something that shapes our personality, it's something that sets us apart from other people.

It uh, you know, it's just that we need support, all of us as human beings need support in different ways and this is just part of human diversity which takes us back to the Convention on the Rights of Persons with Disabilities that celebrates disability as part of human diversity.

So, the 2017 Mental Health Care Act uh replaced the previous Mental Health Act of 1987.

Um, now the 1987 law uh, you know, has components relating to people who needed to be admitted into psychiatric institutions uh whether it was consensual or not.

And these legislations are based on this idea that people with psychosocial disabilities,

people with mental health conditions are in no condition to uh consent to medical treatment.

And that medical treatment for their mental health condition should be given to them irrespective of their consent.

So, once you're in this, you know, you are basically you know you're not in, you're not in a position to decide for yourself so the doctors, etc., will decide for you.

Now, this is a, in in turn, this is a hangover from the colonial Lunacy Act, right.

So, this is, this is kind of its continued till there.

Now, in 2017, this law tried to move closer to the standards of the Convention on the Rights of Persons with Disabilities.

The World Health Organization had come out with a guidance on uh, had come out with a guidance on uh mental health laws um earlier to this.

So this, the 2017 law is quite close to the WHO guidance.

Now the WHO has since changed this guidance, it's important to know.

Because the WHO now has a guidance which is closer to the standards of the Convention on the Rights of Persons with Disabilities.

If you look at the Convention on the Rights of Persons with Disabilities,

the idea that, the idea that a person has no capacity to decide for themselves is out.

Under the convention, every person has legal capacity, your mental capacity may differ and for that you will need support.

But under no circumstances can your legal capacity to make decisions be taken away from you, whether it's regard to the way you use your money, whether it's about you owning property, or whether it's about your mental health decisions.

The 2017 law still allows cons—uh, your legal capacity to make decisions on your mental health care, to be taken away.

However, the conditions are slightly more difficult, so there are specific tests laid out to decide whether someone has capacity to consent or not.

This is still not in line with the CRPD but it's an improvement over the ‘87 Act.

And there have been many cases in which the High Courts have stepped in to uphold the fact that uh, you know,

that we need to ensure that people with psychosocial disabilities have access to rights, um, and can—they cannot be taken away from them arbitrarily.

Now, the Mental Health Law of 2017 also talks about the human rights of people with psychosocial disabilities in mental health, mental health institutions.

About their rights to live with dignity, about their rights to, you know, um uh, like to the rights to information, for example.

It talks about women who may be pregnant with young children, these are small examples.

Uh, and it sets up different authorities to make sure that people who are, you know, who who need, who are perceived to need that kind of high level of support around their mental health conditions have access to that.

The one difference between the 2017 law and the ‘87 law is that the ‘87 law also had provisions to take away decision-making power regarding people's property.

So, if you had a mental health condition, under the ‘87 law, there could be guardianship appointed for you uh on how to dispose of your property.

That's taken away.

The 2017 law is only about mental health care and where there are situations that a person with a psychosocial disability needs levels of support around management of property, etc., that falls under the 2016 law on disability.

Again, I have to emphasize that the this idea of guardianship is not in line with the CRPD

and it's something that, that the committee on the Rights of Persons with Disabilities, when they evaluated India in uh the year 2019,

in its concluding observations does highlight that these laws fall short of CRPD standards.

But for what it's worth it is still there.

That's it.