Deaf in Modern India: finding meaning and money

If you’re a young deaf person in urban India, where do you learn? There’s a good chance it isn’t from school.

Many deaf people told me that they passed their Secondary School Leaving Certificates without actually learning (and that they passed through copying from each other, often with the help of teachers or administrators; such copying is a deaf “social fact” and discussed openly).

This is from an article by Michele Friedner on Deaf Capital in India’s modern economy. Michele did her research in Bangalore and other large cities in India. She shows how deaf people learn from each other.

They learn varieties of Indian Sign Language and important social, moral, and economic skills from each other (e.g., how to interact with other deaf people and hearing people, how to act appropriately toward people of the opposite sex, and how to find and maintain employment).

Part of this deaf community is formed through through deaf-schools, social, cultural and sporting events. An interesting part of Michele’s work is how this community is related with the economy. In part the community is formed by training programs or job opportunities that are based on disability and impairment. And in some ways the community used to create further economic potential.

NGO training programs and certain jobs have been designed specifically for disabled people, and for the hearing-impaired. Beyond the Indian government’s quota of jobs for people with hearing impairments, Michele shows examples of types of work in both data-processing for outsourcing firms, as well as working as baristas in coffee-chains. Certain stereotypes have been produced by these jobs – employers and customers comment on why they would, supposedly, be suitable for deaf people. A “heightened sense of smell, taste and vision” will allegedly make a deaf person a better barista; that a deaf person “cannot talk” apparently makes them more suited to work with computers.

These jobs often do not have the potential for career advancement; and not all deaf people can access this employment. So in parallel, other opportunities are being explored in both the existing deaf community and as a way to extend the reach of the deaf community. Perhaps unfortunately, these appear to be pyramid schemes. Michele explores these under the title multi-level marketing participation which seems to be a way of describing unsustainable business models based on getting money out of new people signing up. The ways these schemes are promoted are based on appealing to a deaf identity – that they are a way for deaf people to get personal success as well as to help other deaf people.

Michele’s analysis of this to move away from “disability stigma” to “disability value”. As she points out, a lot of work on disabled people in this part of the world focuses on their exclusion and marginalisation. We need different ideas to understand these positive opportunities that are created for disabled people. Whether it is access to jobs in the new Indian economy or simply making money from begging, disability isn’t simply a matter of social exclusion.

Perhaps the move from stigma to this kind of (potentially exploitative and/or extractive) value is not such a big move at all. Perhaps there is a way that stigma and value are opposite sides of the same coin. However, in light of the making of these new “workers with disabilities” and in light of the fact that disability is now being marketed as “added value” by NGOs and corporate Human Resource executives, it seems to me that we need a new way of theorizing disability. This new way of theorizing should ideally also address disability value.

I agree with this assessment. So much work on disability rights and policy assume that disability is something purely negative, or just the results of barriers. This isn’t the case either for individual disabled people, or for the way that disabled people are perceived. Part of “disability value” is genuinely positive in the new connections and opportunities it creates – often, as Michele shows where government and other systems have failed. But part of values around disability have dangers too. Positive interpretations of why deaf people make good baristas are stereotypes that potentially limit people in their future opportunities. The fact that pyramid schemes develop around a deaf identity shows both the creative potential of disability as well as being an example of this potential being put to misuse.

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Choice and Disability Policy: give people choices, and try to change them

Independence doesn’t mean doing everything yourself, it means having your own choices.

The point is that independent people have control over their lives, not that they perform every task themselves. Independence is not linked to the physical or intellectual capacity to care for oneself without assistance; independence is created by having assistance when and how one requires it.

Jenny Morris recalls this definition from the independent living movement in the UK. I find this definition of independence inspiring. It gives a positive interpretation of people doing things for each other in everyday life. Rather than feeling bad that I need help to get up some steps, I can focus on how I can ask someone for support. It changes the conversation from whether you can or can’t get up steps, dress yourself, use public transport, or whatever – to a conversation about whether you have control over how these things are done.

I had a great conversation on twitter with Jenny Morris and Neil Crowther to discuss this further. One of the important things that came out was the specific nature of choices related to disability support. If you have choice over how and when you receive disability-related support then that will result in having choice over the important things in your life – where you live, if you work, where you go. If you can control how you get access to paratransit, say, or a personal assistant, then you can live something closer to the life that you want to live.

This perspective on choice is a vital impetus for the reform of disability support.

Provision of disability services can fail to recognise the choice of the user. Accessible transport or care only available for certain hours; or a service that treats all disabled people in the same way regardless of their needs. I face tiny, regular battles in life about people that want to give me a hand but start doing so without asking how. I find it really difficult to explain to to them that I am grateful for their consideration and upset that they didn’t ask me what would be best for me. This problem is a hundred times magnified in the face of services from charities or government – the “special” services for disabled people that we know we should be grateful for but often have limited choice about the way we receive them.

Choice, of course, isn’t a solution to everything. And actually choice is a much more complex area than it’s use in the attractive definition of the independence living movement. Jenny wrote that she would resist seeing limitations, and shared an important piece she wrote on different types of communication. I’d be interested to know what she thinks of something like the UK’s Mental Capacity Act which is a framework for precisely how to deal with limitations of ability to make decisions. Neil described choice as a means to an end – that of a self-directed life – rather than an end in itself. The right to choose is one right among others, and isn’t sufficient by itself. It doesn’t guarantee access to other rights, or eliminate all forms of discrimination. A choice between two evils is a choice but not one that improves what you had to choose.

But our work on disability policy has contradictory impulses.

On the one hand we reify choice, and “voice” of persons with disabilities themselves. What happens if someone wants to make the wrong choice? We probably agree that people, in general, should be able to make bad decisions. The Mental Capacity Act has the right to make an unwise decision as one of its principles. On the other hand, we often talk about the need for motivational or counselling support or capacity building of some kind – all things designed to bring about changes in people’s choices. In terms of policy and service provision we often try to limit, constrict or change people’s intentions in the face of risk, or someone not doing what we think they might be capable of.

In my own work in Bangladesh I take it for granted that many people with disabilities here, or their families, will have low expectations about what they can achieve. So much of what I recommend is based on trying to change these choices. In a focus group I held here, we asked a man what work he wanted to do. His response was “I can’t work, because I can’t see”. My reaction isn’t (just?) to respect his choice but also to try to change it. Disability services at their best provide transformative change. That includes changing the choices people make.

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Do you sit or squat? Toilet-makers in South Asia need to ask this question

It’s time for a toilet break.

One of the problems poor people face in this part of the world is that they don’t have toilets or clean water. Language here starts getting complicated pretty quickly – the Millenium Development Goal on environment refers to “basic” and “improved sanitation”. One of the things that this is saying is that not everyone needs to have their own personal toilet – they might share with other families – but we really don’t want them “practicing open defecation”, or shitting out in the open. That’s bad for them and for people in the same community.

There’s a lot of back and forth about this. Bill Gates is personally reinventing the toilet. A UK government project in Bangladesh (that I used to work for) has built toilets for over 140,000 people. Basically, building people toilets is one of the key things that international development work does.

Except that not everyone can use the toilets after they’ve been made. Here’s a great report from Nepal. It’s from 2004, but still rings true:

Latrine designs are often made by male engineers who do not have to use the latrines. The designs are drawn up in offices far away from communities without any consultation with the broad range of end users and therefore designers are not aware of the difficulties faced by certain categories of users.

From Making Latrines User Friendly for Everyone by Nepal Water for Health.

What they found out is that when they talked to people, and women especially, the toilets that they’d been making had a bunch of problems. These problems hadn’t come out because they didn’t ask what users needed. Thousands – or hundreds of thousands – of latrines had been made with the same design. For me, the one-size-fits-all approach is a key reason that development work finds disability inclusion hard.

A mother and son stand in front of a white latrine. There are two steps to enter, where there is a squat-toilet.

This photo is from Habitat for Humanity, of a latrine they built in Bangladesh. Hopefully it’s fine for this family — but this design wouldn’t work for everyone.

In this case the one-size-fits-all solution were squat toilets. Users didn’t have anything to grab onto and the foot rests were easy to slip off of. Another common issue in Bangladesh is that toilets are raised and have steps to go in. In the research from Nepal, people who were pregnant, elderly, or sick all reported problems with the standard design of latrine. One or two disabled people were interviewed as well, but the study shows that the typical design wasn’t working even for people without obvious disabilities.

There are plenty of other issues with toilets, not to do with how you sit on them. The people I know who work on sanitation issues are particularly concerned with disposal of faeces, as often there isn’t a connection to a sewage supply. In its piece on Sanitation in India, The Economist points out that cultural practices might be a limitation too. And who empties the pit when it’s full? And how do you get the local and national branches of government to put systems into place?

All of these are really key questions. But business-as-usual is failing people right now by continuing to make toilets they can’t use. We know what the solutions are. Some of it is a bit of technology – a grab-bar hear, or a temporary seat, or a western commode. I’ve seen people use ropes for support, as well. And beyond the technology, too: you need user input, shared information and awareness of these issues too. When we work on sanitation we need to ask ourselves difficult questions about who’s being left out by what we do.

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The Data Revolution: Count us in, count us out

There’s a fascinating conversation on data over on Development Drums A fascinating conversation on what now? The data revolution.

The revolution is coming, and disabled people are part of it.

Data is exciting. Satellite images of trees can help stop deforestation. Mobile-phone usage is a way to measure poverty. Data is important. You need to keep track of basic things like births and deaths, or the economy. Nigeria’s GDP grew by 90% overnight because of dodgy data. The “data revolution” has caught on as a phrase because people about the ways of getting new data, combining data in different ways, being able to make more comparisons and see things they hadn’t before.

You know what I’m going to say now. No, except for a general remark on marginalised groups, the panellists did not mention disability. Fortunately plenty of other people have.

A disability data revolution is needed. Disability is complex: no gold standard measure exists, different measures exist for different purposes, and the use of different measures in different countries makes international comparison of prevalence or outcomes difficult. However, more is now known about disability prevalence, recently estimated at 15% or 1 billion people worldwide, 80% of whom live in LMICs. The ground for a data revolution has been prepared.

Sophie Mitra. She also has a blog-post as part of a series on the post-2015 data revolution.

If that’s not enough, go see the background note over at ODI on old-age, disability and mental-health in the post-2015 data framework.

Poor data on disability is part of the exclusion disabled people face.

From the little data that is currently available we know that people with disabilities are missing out. […] Without [more] data we can’t determine the impact programmes are having on this group of people. We’re also prevented from being able to identify barriers and put in place the necessary changes.

Sightsavers Policy Bloggers.

As the panellists on Development Drums say, if the no one is there when the tree falls, has it made a sound? If we don’t measure it, we can’t keep track of when disabled people are being excluded. Recent conversations I’ve had in development projects in Bangladesh have shown two sides of this phenomenon. A Programme Manager said that there was no specific target for supporting disabled people in his project and that’s why it hadn’t been a focus. A disability activist said that if programmes don’t monitor the number of disabled people supported then we can’t hold them to account. As the linked articles say, disability measurement has been pretty complicated and inconsistent in the past – but now we have better tools and we are always pushing for more people to use them.

But this kind of data isn’t always what we need.

Data itself doesn’t make change. Databases do not knock on doors, make phonecalls, or push for institutional reform. We already have plenty of data that we’re not using very well. Will the revolution change that?

Actually, data – in the sense of numbers and measurement – isn’t always the sticking point. Alison Croft asks if we need to know how many disabled children there are in order to promote access to education and, surprisingly, the answer isn’t obvious. We can do quite a bit for the education of disabled children without knowing how many there are. We can provide curricula that use various media; we can equip teachers with problem-solving, individual-centred teaching styles. An example Croft gives of a pragmatic approach is allowances for teachers in Botswana to provide extra support for children having difficulty learning.

The contrast she makes is between responsive interventions (which do not necessarily need exact numbers) and planned interventions (which do). We don’t need to know how many disabled children there are to prepare teachers to treat learners as individuals. We do if you’re providing a specific support like sign-language interpreters.

We don’t need to measure everything – there are other ways to learn.

Croft’s argument is both a warning and a relief. It’s a warning because surveys might delay or be done instead of service provision – and the results might mislead people about the phenomenon being measured. Disability suffers from this problem – plenty of people find the 15% figure impossible to relate to their personal experience; surveys with lower numbers give us an excuse for inaction; and in the middle of this back and forth it’s so easy to say we need more data and do nothing more.

The argument is a also relief because it means we can start work now – we don’t have to wait for surveys that prove things with absolute numbers and cost effectiveness. She recommends that we start with learning lessons from local interventions and based on this working out what’s needed at a national level. This isn’t data that can be aggregated, and lessons from how teachers and schools have worked with specific disabled children aren’t, I think, part of what’s seen as the “data” in the data revolution. But maybe they should be.

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“Who will marry your daughter?” — thoughts on disabled beggars in Dhaka City

Unfortunately, disabled people are often most visible in Dhaka as beggars. Key intersections, religious festivals, shopping areas, outside fancy restaurants: all are places where you can find people asking for money. Helplessness and visible impairments are played up to.

A few months ago a young man knocks on the window of my car. One of his arms is shrivelled, the other appears fine. The shirt sleeve of his “bad” arm is rolled up, the other worn normally. I roll down the window – slightly, just in case – to tell him “you can work”.

My own work here is about disabled people getting access to employment: beggars using their impairments to get money is as much a practical challenge as an ideological one to what I am trying to achieve. “No one will give me a job,” he replies. I have to recognise his reply as true. The traffic moves and off I go to the office to write more reports about the benefits of employing disabled people.

Many people seated in a small room. A man standing in a yellow shirt and gesturing while speaking.

Cramped into someone’s small room, a man stands to make the case for joining together.

A friend here has news of an association of beggars. Off we go down one of the broken roads in the outskirts of Dhaka. I greet the president of the association, Kalam – “I have no hands,” he says, unnecessarily. An unnecessary comment, and one that challenges my understanding of disability being present in social and environmental barriers rather than specific impairments. Returning to NGO-speak that I am more comfortable with, it turns out that they do not call themselves an association of beggars but rather something to do with development of disabled people.

The members introduce themselves. They are mostly men, mostly people with physical disabilities that you can see. Nobody says that they “beg” – they say they ask for “help”. The group is a mixture of people who have small shops, who sell chocolates or other things on the street, and who “ask for help”. Unlike other groups of disabled people I’ve met in Dhaka it’s clear that people here have incomes. Their struggles seem to be like those of people in work – where best to ply their trade, where to live, how to get enough to support their families.

One man angrily complains that after an injury working there was no way he could find work and so he was left with no choice but to beg. They have a small text on how they hate “begging” and wish they had work. This may be true, but I don’t think it’s the whole truth. Anecdotally at least, beggars in Dhaka can earn 10,000-15,000 Tk ($125-$190) a month, which given a minimum wage for garments workers of 5,300 Tk means they are not among the poorest people in the city. Which is precisely the problem: they get more from begging than they could expect to get for low-skilled work, even if such low-skilled work was available for them.

The meeting is about whether they want to renew their organisation. Some of them speak to the benefits of being together, and how this will mean that they won’t get pushed around, and that they will have a broader financial back-up of the group to help with emergency expenses or opening small shops.

A program I saw a few years ago had successfully gotten some disabled people from begging into running their own businesses. It worked through appealing to the stigma that they currently face – “who will marry your daughter?” – as a motivation to do something new, even if it might be less well remunerated.

It’s certainly challenging to do a program like that, but it strikes me that there’s a bigger challenge here as well – to change the way we think about beggars on the street. Many people have reactions like the one I had to the person that knocked on my window: a person shouldn’t be begging if they can work. Other people see giving to disabled people as legitimate precisely because they can’t work. Both reactions miss the problems that the person might face beyond the physical one.

Not only do people who beg need valid alternatives, but they also deserve to be recognised – in their present situation – as more than the two extremes of “unable to work” and “too lazy to work”. As the group of people I met showed, there is no clear distinction between working and begging. Whether it’s selling chocolates on the street, or asking for “help”, the situation is more complex than it appears when someone knocks on the car window and puts forward an expression of hopelessness.

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Back to the beginning – Ed Robert Campus in Berkeley

Recently I visited Berkeley, to see one of the birth places of the disability rights movement in the US. After contracting polio, Ed Robert’s doctor said that he would be “better off dead”. Rather than dying, Ed Roberts was a leader in what became the now global movement for independent living. Today the Ed Roberts Campus is a building that celebrates and continues his work.

Photo of red helical ramp linking two floors, lit by sunshine

Ed Roberts fought for curb-cuts in Berkeley.
Now we have a building with a helical ramp from first to second floor.
Someone put a video of going down the ramp in a wheelchair on youtube..

Seven organisations got together to create this building, which opened a few years ago. It’s a place that feels great to be in – partly because of the design, partly because of the history and partly because every other person is presenting some type of disability. The people that are here use it as their base to make the rest of society more disability friendly too.

Two images. The top has a wheel around which the text says "The Wheel is Turning". The bottom has a wheelchair user being picked up by a bird - "sometimes wheelchairs take flight".

The way Ingrid put it is that here it’s easy to be “out” as disabled. “I can get to work everyday,” she says, thanks to the integration with accessible public transport. In her previous workplaces her disability was visible, but she “tried to make it a non-issue”. Here you can openly show your disability and get the adjustments that you need.

A lady lies back on a man with a wheelchair - hearts are in the picture, and the text read "dance with me"

The images in this post are from the wonderful Disability Mural, paintings exploring being “out” as disabled people.

Two spindly hands intertwined. Text reads "a quiet strength".

For more on the history, this video on the “Power of 504” is a moving portrayal of one of the important political moments, when people with disabilities occupied a federal building to demand implementation of a non-discrimination clause.

Thanks very much to Susan and Ingrid at DREDF and other colleagues for welcoming me into the centre.

A motorized wheelchair speeds towards the edge of a red cliff-like shape.

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Disability: It’s not a Bad Thing and it doesn’t make you Exceptional

An awesome talk from Stella Young, an Australian comedian and activist:

I’ve lost count of the number of times that I’ve been approached, by strangers, wanting to tell me that they think I’m brave or inspirational. And this was long before my work had any kind of a public profile. They were just kind of congratulating me for managing to get up in the morning and remember my own name. (See the transcript.)

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Spending time with local disabled people’s organisations – pictures from Narayongonj

A seminar on disability! I’m there. This one is in Narayongonj, an industrial sprawl of a city 30km South of Dhaka.

Entrance to offices with three steps and a ramp. People are at entrance; one is in a wheelchair.

At the entrance to local government offices. Notice the ramp: Disabled Advocacy Has Been Here.

Liton is a good friend and the main organiser.

Liton smiles at the camera, wearing a panjabi and sitting in a wheelchair.

A strong leader in the disability movemenet.

He is the president of Narayangonj Sodor Upazilla Disability Development Council. This is a local organisation run by disabled people.

Shiblu comes towards the building in his tricycles. Trees and buildings in the background.

Shiblu wants help to get on TV – showing people he can swim and climb trees.

Ok, so we hang around for over an hour waiting for some of the key guests to turn up.

4 people - three women, and Shiblu. Two of the women are sitting and one standing behind. They all have disabilities.

Some joking around and some sitting around.
They say I should come for a picnic. I say this is the picnic. They say this is not the picnic.

Officially the seminar is about good practices. Thanks to Handicap International Bangladesh and the German government for supporting the costs.

A banner with the workshop title and guests, below portraits of the Prime Minister and her Father.

This banner says “Good Practice Sharing Workshop” except the English words are written phonetically in Bangla.

And we’re off! Speeches. A range of government people and some NGOs that are working here. Perhaps the most important thing is getting people in the same room.

Man speaking at podium; view is from main table so bottles and flowers are in-between camera and speaker.

Setting the world to rights.

I said some stuff, about how great it was that a disabled people’s organisation is speaking for disabled people here. Everyone is fascinated by the fact I am speaking Bangla, but I’m not sure how much they’re listening to what I’m trying to say in it.

A few rows of audience seated, mixed men and women.

I asked a political leader here on how to give better speeches. He said that no matter how important they are, you have to think that your audience is made of cows and goats and that you are showing them the way.

Our “chief guest” was the government administrator of the sub-district. I didn’t get a good photo of him.

Interestingly, both the administrator and an elected Union Chairman asked Liton’s organisation to give them advice on how they should tackle disability. I think this is brilliant. Other organisations lead by disabled people have problems getting the attention of people in government – at least here in Narayongonj the connection has been firmly made. The picture above shows one of the ramps that have been made as a result, and the organisation also was given office space in this government complex. I’m looking forward to see what more comes out of the relationship.

And then we all eat lunch. All except for Liton, who carries on working throughout. I give him feedback on a concept note they’re developing to get funding and then I go home. He carries on working, going on to a different event.

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What type of matchmaking do we want? Linking disabled people and employers (part 2)

Last week I wrote about organisations in India that are working to get disabled people into employment. In this second post, I’ll write about the way the work they do is a different from business-as-normal in the disability sector in this part of the world. Rather than giving everyone assistive devices or never-ending rights-based work, they find individual solutions to individual problems. And they manage to do that through partnerships, rather than trying to provide all the solutions themselves.

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How to matchmake between disabled people and employers? Experiences from India (part 1)

One of the real concerns for disabled people in Bangladesh is that of employment. At every level, from those who have little or no education, to those with postgraduate degrees, getting and maintaining a livelihood is tough. By choice or by accident, employers often aren’t ready to employ disabled people. They don’t think that people with disabilities can do the work, and they’re often not ready to make the necessary adaptations. What can be done? On a trip to India I came across great examples of organisations that are bridging this gap.

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