What are difficulties in cash transfers for persons with disabilities? Nepal edition.

Kristie Drucza did important research in Nepal on social protection, including on the grants given to persons with disabilities.

Despite the government’s good intentions in funding the disability allowance in Nepal, it remains a problematic cash transfer that can be seen to perpetuate injustices for those with disabilities. If the government chooses to give a disability allowance, even with the limited resources it has, then it should be transparent, equitable and accountable. Weak governance along with Nepal’s politics and discrimination has rendered Nepal’s disability allowance a token charity gesture.

Fault in the System“, The Kathmandu Post, September 2015

Drucza’s work is great at showing the range of difficulties in the allowance for disabled people, that ends up perpetuating injustices. Read the article for full details. Here I’ve taken the liberty of summarizing the challenges identified:

  1. It’s not enough money – currently they’re only a few dollars a month.
  2. There are fixed number of allowances, and it isn’t related to the number of persons with disabilities.
  3. Less than 10% of persons with disabilities get these grants.
  4. Getting the allowance is difficult and expensive. You need to travel and register in various places, and this could cost the equivalent of several months’ allowance.
  5. You’re only eligible depending on what certification of disability you have, and people aren’t made fully aware of this.
  6. If you know the right people then the decision might be different.
  7. Some of the decisions are arbitrary, and officials haven’t been trained in how to identify disability.
  8. The government doesn’t use numbers of disabled people registered to guide policy or planning.

Many of these points could be made in neighbouring contexts, such as Bangladesh or India. The Bangladesh disability allowance seems to have similar problems, but has been growing in both the amount of the grant and the number of people that receive it.

And even once all those problems are sorted out there are more later! It’s really hard to make a grant like this effective in empowering people to participate more. In many countries it turns out that disability allowances discourage people looking for work.

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Reflections on 4+ years living and working in Bangladesh

It’s hard to describe Bangladesh because some of the first things that come to mind are the things that you don’t like. It’s poor, dirty, unfair, horribly horribly unfair, and inconvenient. I’ll probably tell you about the inconvenience first, the traffic jams, oh, the things that should happen and don’t. “Everything is possible in Bangladesh” is what you’ll be told when something previously impossible has just happened in front of you. Sure. But where everything is possible, the thing you need or expect is not very likely to happen. Things are not where they should be, and things are not as they seem. And there is a wonderful new world to be found in that and in changing your expectations.

আমার সোনার বাংলা আমি তমায় ভালবাসি… সোনার বাংলা আবার কয়? দেখি জ্যামজট, পাই গন্ধ, কাদা, load-sharing, হারতাল। এটা রবীন্দ্রনাথের বাংলা নয়, এটা ঢাকা সিটি. এটা ঈদের chaos এবং ঈদের আনন্দ। ঝগড়া এবং ভালবাসা। যে ভাবে আছ, ষে ভাবে আমি তমায় ভালবাসি আমার নোংরার বাংলা।

Traffic jam in Dhaka. Background with industrial buildings, buses, people sitting on top of buses. Foreground cars, all stopped, and someone walking between them.

In Dhaka, so many of us are trying to get places that we sometimes don’t get very far at all.

Alongside the Bangladesh you see is the Bangladesh you feel. You are pulled and pulled into the urgency and intensity of personal relationships that are so overwhelming here. “What country? How much money do you earn?” these are the opening steps in the dance – but the real character of the dance is found later on in the intimacy of “what are you doing?”, “will you miss me?”, “have you forgotten us?”. I told someone I was leaving and spontaneously, directly and with all sincerity he said that he will remember me for the rest of his life.

You can get used to the unfair and the inconvenient. Bangladeshis and foreigners alike, we are all struggling with it in Bangladesh. We are all getting used to it one way or another, and plenty of us, Bangladeshis and foreigners alike, are leaving or looking to leave. In the face of uncertainty, injustice, a political space with no room for people to express themselves, and extreme social and economic constraints, there is infinite room for one more thing – feelings. In a space where you have no room for movement, but everything is changeable, love, hate, kindness, and tyranny all flourish. ভালবাসাটা বেশি, মনে করি আমি।

It’s the love that’s still overwhelming. I’m not even sure of the name of the person who said he will remember me for the rest of his life. There are so many, so many relationships and people here that people have given love so intensely. I have only been able to return it in a small way. I have been lucky to be brought into a family, “adopted”, and with that to have gained a Baba (remember him in your prayers), a Ma, two brothers and a sister, their families, and cousins and aunts and uncles and in-laws. It fills me with joy when I am sitting next to Ma, someone asks who I am, and she replies “my son” without any explanation, except sometimes to add that I am the “younger” son. Understand what you will.

মা, আমি বাংলা বলি যেন তুমি বুঝতে পার। যখন তোমার পাশে বসি আর কেউ প্রশ্ন করে, “সে কে?”, তখন তুমি বল “আমার ছেলে”, আর আমি খুব গর্ব বধ করি। আমাদের ভালবাসা এবং পরিচয়ের বর্ণনা করার জন্য আমি শব্দ পাচ্ছি না। যে ভাবে আমি বাসা আসতাম, যে ভাবে আমি তোমাদের সাথে ঈদ পালন করতাম… একসাথে আমরা অনেক আনন্দ করছি, আর একসাথে আমরা কিছু দুখও পেলাম। আস্তে আস্তে আমাদের পরিচয় আপন হয়ে গেছে। মা, আমি জানি যে প্রতিদিন তুমি আমার কথা মনে রাখ। মা, আমি আশা করি তুমিও জানো যে আমার মনের মধ্যে তোমাকে নিয়ে যাব।

Lady sitting with shawl over her head, with a man, woman and man standing behind, smiling..

My Bangladeshi Ma, Boro Bhai, Boro Apu and Shaitan.

I haven’t found, yet, the way that I would like to live in Bangladesh. I wanted at first to become Bangladeshi, to absorb as much as I could. I learned how to say আমি বাংলা হতে চাই, I want to be Bengali, the same day I bought my first lungi. I searched and searched for the authentic and then I stopped searching. Some of the reason I stopped searching is my work that puts me in an English-speaking, air-conditioned office; some of it is my comfort that makes it easier to have an apartment and a driver and etc; some of it is my disability, that limits the way I roam the fields and the lanes, that keeps me in the places with the western toilet, that limits me in roaming the streets of Dhaka. Some of it is simply that I am who I am and there’s a limit to how much one person can explore, and I don’t have the drive for it that I did before. Some of it is that I have found the authentic, and nurture relationships across Bangladesh with all sorts of people. It’s not quite the life I would like, yet – a social life that’s full at the same time as being so lacking, a life that’s constrained at the same time as comfortable, a life full of discoveries as one cuts oneself off from different parts of the world. Or discoveries about different parts of the world as one cuts oneself off from Bangladesh.

I got my first job in Bangladesh. Not long after starting my Baba said to me that ah, you are just one of the foreigners taking the poor people’s money, Britishers give money to Bangladesh and then British people come and take it in salaries and cars before it gets to the Bangladeshis. And leaving this time, I met with some “beneficiaries” of a project I was part of, and they had a similar line – সবাই খাইসে, শুধু আমরা খাই নি, everyone got money, except them, the people who it was supposedly for. In my first year here I was at a “social protection” conference in a fancy hotel. We were discussing the benefits the government gives, which are in the range of a few dollars a month. The lunch buffet was worth 5-10 of these monthly allowances.

খাইসে, খাইসে। সবাই খাইসে। আমিও খাইসি।

And now my career is closer and closer to that conference. When you get flown about between places you don’t know what’s going on the country, you lose the sense of the absurd luxury that you are in compared to local standards. You just compare it to your allowance, and your allowance is too high. The main information you get about the country is from your colleagues, the ones that speak English. It’s a one-dimensional view. I am on my way to Geneva, where people will say I was in the “field office”. I was not in the field. I was in the posh part of the capital city, tapping away at my laptop, complaining about traffic jams and comparing the new restaurants that opened.

an open laptop on a cafe table with other tables in the background

A lot of my work in Bangladesh looked like this.

বাইরে গিয়ে, আমি কার সাথে বাংলা বলব? এখুন আমার কথা বুঝবে কে? আমি বাংলা ভাষা শিখে অনেক মজা পেয়েছি। এমনি ভাষাটা সুন্দর, এমনি বাংলা নিয়ে thinking করা একটা মজা আছে। কিন্তু আমার সবচে বড় পাওয়া ছিল যে বাংলা শিখে আমি এত নতুন দৃষ্টিবঙ্গি পেয়েছি। সবাইয়ের সাথে কথা বলতে পারলে আমি শুনতে পেরেছি বিভিন্ন ইতিহাস আর জীবনের গল্প যে আমার নিজের ইতিহাস আর জীবন থেকে একেবারে আলাদাহ হয়। বাংলা শিখে অনেক জানেলা খুলা হয়েছে আমার মনের মধ্যে। এই জন্য আমি বাংলাদেশ থাকতে এত পছন্দ করি, এই জন্য আমি বার বার আসি, বার বার আসব।

I am happy with the Bengali I have learned and the understanding it has given me of the country and culture. I don’t know how colleagues can come here and not learn it. How can they understand what’s going on? Why don’t they get frustrated by all that’s getting lost in translation? I realised, slowly, we all have different talents and different ways of communicating and it is not for everyone to come in the way that I have. But I also realise that being able not just to speak Bangla but to understand other people’s points of views has deeply enriched the way that I work. Both the way that I interact with colleagues and in the way I can make suggestions. People often say the thing they like most about working with me is that I speak Bangla – I like to think it’s not just the language, but the way I engage and try to share and try to understand what their situation is, not just what their situation should be.

Here in Bangladesh I can work more honestly than I can work in other countries. I can check in with colleagues a couple of years after we’ve tried something to see how it turned out. I can go back and visit people. I can do projects in my spare time. I can be part of a movement of friends and colleagues that are struggling to do things, inside or outside of their professional work, whether we are paid for it or not.

From living and working here I have learned how fake and how useless “development aid” can be. I have been extremely frustrated not with the outside systems – Bangladesh is corrupt, yes, sure, that’s why we’re here – but rather with the systems within the offices where we work, where we don’t practice what we preach, where we let problems continue, where we reproduce the hierarchies and inequalities we are meant to be challenging.

At the same time, from my work and from my friends, I have learned what real social change looks like. I have friends with disabilities who have lived through change in their lifetimes, from being isolated to being important members in their communities. I have seen the many ways you can wheedle and encourage and try and try again to get people in power to make changes and to achieve a fairer world. I know from this more about the person that I want to be and the role I want to have in the world. My time in Bangladesh has shown me what purpose might look like, and what you have to do to achieve it.

প্রতিবন্ধী ভাই বনরা, আমি তোমাদের কাছ থেকে অনেক কিছু শিখলাম। তোমরা অনেকে জান কি বাংলাদেশের আসার আগে আমি এই ভাবে প্রতিবন্ধীটা বিষয় নিয়ে কাজ করি নি। আমি তোমাদের কাছ থেকে শিখলাম আন্দোলন করা মানে কি। আমি তোমাদের কাছ থেকে শিখলাম লেগে থাকা মানে কি। তোমাদের কাছ থেকে আমি শিখলাম লড়াই করা মানে কি।

7 people sitting around a table in a small room, looking at the camera.

Sitting with friends with whom I have discovered myself and the world.

যখন অন্য দেশের অবস্থা দেখি, তারা সব কিছু টাকা দিয়ে সমাধান করতে চায়। বাংলদেশে আমাদের টাকা নাই, আর এই জন্য আমরা অন্য উপায় পাচ্ছি কাজ করার জন্য আর আমাদের অধিকার পাওয়ার জন্য।

I don’t yet know how to balance the two. My career has been a story of learning to accept things I was previously frustrated with. I realised, during a contract negotiation, that I had “sold myself”, that I was just doing it for money. So I left. I was back a few months later. Since coming back I’ve learned to sell myself for more money. I’ve also learned what the possibilities are to do things closer to what I believe in, both inside and outside of my professional work. And (fortunately? unfortunately?) I’ve learned how to accept and reproduce the parts I don’t believe in. I’m not sure which way lies in the future.

Leaving Bangladesh now I am happy that I was able to influence people and make some things happen in the same way people have influenced me. I am proudest of the personal relationships I built with colleagues and friends, where, at their best, what we have shared has changed the way both of us have done things. To some extent I have been a positive example.

To some extent I have failed in my work. Well let’s not put it like that, because on my CV I’m putting them as successes. There are things I worked on that I am disappointed by. We didn’t support people as much as we should have or as much as we promised we would, or as much as the people needed. I’ve done a lot of talking and written a lot of documents and been in a lot of meetings, and it’s not always easy to see how, outside of the artificial world of projects and deadlines and indicators, it has led to anything useful. …

In theory, it’s been fascinating living in Dhaka and Bangladesh at this time. We will be able to say afterwards that we lived through a process of rapid social change and didn’t notice a damn thing. In Bangladesh you can never be sure whether your plan for tomorrow will come through, so you lose sight of the bigger picture. Bangladesh is a young country, born in so much pain in 1971. The original “bread basket”, Bangladesh has since then doubled in population. But even though its GDP per-capita is less than India or Pakistan, in many social indicators it’s doing better than its neighbours. Bangladeshis have better life expectancy than Indians or Pakistanis. Lower infant mortality. Fewer child deaths. Fewer maternal deaths. Higher immunisation of children. Higher female literacy. Even though Bangladesh is a desperately unfair society, in many ways we are doing better, with fewer resources, than our neighbours. People from India and Pakistan are often quite rude about Bangladesh, but unfortunately for them, these statistics speak louder than their words ever can.

A water-soaked field in Bangladesh, with trees in the background and shrubs in fore-ground.

I should also add that Bangladesh, outside of Dhaka, is beautiful.

আমি এই বাংলা সাহস করে লিখছি। আসলে আমার বাংলা লেখার অভ্যাস নাই। মনে হয়েছে কি একজন শিক্ষকের কাছ এই লেখার চেক করে নিব। তারপরে মনে হল কি, ভুল থাকলে ভুল থাকুক। ভুল তো আমারই। আমি যদি ভাল করে শিখতে পারি নি, দোষ তোমাদের। আমাকে শিখাও নি কেন?

I am leaving Bangladesh feeling that there’s so much I’ve learned, but also that there’s so much left to learn. My Bangla is fluent but there are so many ways it could be better, and there are still plenty of conversations I can’t follow, even of people close to me. There are so many things about life and culture and the country that are entirely unknown to me. Each of us takes our own way to explore a country, whether it is our own or not. In making Bangladesh my own it is also clear how many parts of it I don’t know and maybe never will. In making Bangladesh my own, my understanding of the world and how to relate to people has changed.

প্রিয় বন্ধুরা, তোমাদের সাথে আমি বড় হয়েছি। কোন ভুল থাকলে আমাকে ক্ষমা করে দাও। আমি ফিরে আসব।

I will come back. There are people here that will be part of my life forever, and we will explore the future together. There is plenty of work here to be done, some that I can get paid for, some that I believe in, some that’s both. On leaving, the most interesting questions are ahead. What has my time in Bangladesh turned me into, and what will I do with that? My connections with this place, its people, the Bangladeshi diaspora and Bangladesh-lovers across the world – what will these turn into? The restless uncertainty and striving of life in Bangladesh, কালকে কি হবে, is one that I take forward. যা হবে, তাই হবে। আমরা একসাথে আছি।

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A summary of what we know about disability and poverty reduction in Bangladesh

I’m excited to be able to share with you recommendations on including persons with disabilities in poverty reduction based on field experience in Bangladesh. After discussions and a couple of rounds of drafting, we’ve been able to produce a summary of the existing situation and opportunities for future work.

It’s based on practical experience here in Bangladesh, and some of the background information has already gone into the Government of Bangladesh’s planning for the 7th Five Year Plan.

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Disability is part of who I am and why I’m great at my job

Following on from a series of posts on disability in aid-work on WhyDev I wrote a response. In it I affirm positively the place my own disability has had in my work, and then, beyond this, try to explain why we shouldn’t see disability or disabled people as separate. Disability is a normal part of all our lives, and a common – albeit underestimated – experience for all of us working in international development.

See the full post: There are more Aid Workers with Disabilities than you think.

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In the UK, are attitudes towards disabled people getting worse?

Jenny Morris, one of the stalwarts of the disability rights movements in the UK, has written an important post on the difference in attitudes towards disabled people in 1992 and 2015. Both of these are election years, and Morris compares the changes. Unfortunately, a lot of ground that the social understanding of disability gained in the 80s and 90s seems to be being lost:

In 1992, public debate was about whether disabled people were to be pitied as the objects of charity and needed to be ‘looked after’, or whether we should have equal rights to access education, employment, independent living. Today, public debate is about whether we are avoiding our responsibilities to seek employment and need conditions and sanctions to get us ‘off benefits’, or whether we are ‘vulnerable’. Instead of recognising the additional support, and the removal of barriers, which are required in order for us to access the same opportunities as others, we are – in order to avoid being labelled as ‘scroungers’ – once again forced into the role of tragic victims, where the legitimacy of our requirements is to be measured by how ‘vulnerable’, ill and/or impaired we are.

The Conservative party, which passed the 1995 Disability Discrimination Act and introduced the original Disability Living Allowance is now making cuts. Particularly important is Morris’ description of how “vulnerability” of disabled people is contributed to by removing benefits or threatening to remove support. For example, see the Access to Work programme that stops disabled people working.

Changes in the UK serve as a warning for our work on disability inclusion in other countries. When we are working in countries that have fewer resources, we can only dream of securing the kind of support that the UK government provides for disabled people. The Bangladesh government recently increased the disability allowance from a monthly 300Tk (less than £3) to 500Tk (less than £5) – and this is still only for a few hundred thousand people, in a country where we think that there are over 20 million people with disabilities.

When we work in international development, we argue that increasing government support is the sustainable option – that it will lead to permanent gains for disabled people. Unfortunately the last twenty years in the UK have shown two ways this isn’t the case. First, that government supports can be taken away, even by the same party that put them there to start with. Even the threat of these being taken away leads to considerable worry and discomfort. Secondly, that the system of government support creates this debate around disabled people as either “deserving” or “undeserving”: creating a conversation where either the disabled person is a “scrounger” taking benefits they shouldn’t be, or they are a tragic victim that needs these benefits to survive.

The rest of the world has learned so much from the UK in terms of working towards equal rights for people with disabilities. Maybe it’s time that the UK learned it back.

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Disability can help you make money and change family values? Recent advertisements from India

The classic way to use your disability to make money is by begging. There’s even pyramid schemes based around disability. Recently in India, big corporates are getting in on the act, using disability and cancer to help sell their products. Stories of differently-abled are working for advertisers is a handy article on livemint mentioning this recent crop. This Nescafe advertisement of a stammering comedian is one that I’d already seen.

The comedian struggles, is ignored, then learns to make a joke of his stammer, and it turns out at the end that its coffee that’s been keeping him and us going. This article has some more about the clip. Ok and so if you weren’t moved by this, try a couple of videos about fathers with their disabled children made by life insurance companies.

Khud ko lar buland features a father with a son on the autism spectrum. Initially shocked by the diagnosis, the father rallies around, supports and plays with his son. Oh no! the father loses his job. But rallies around again to start his own business and spend more time with his son. Was that sweet enough? Try another:

A girl with a prosthetic leg is, with the support of her father, learning to be a classical dancer. Awww. Actually I found this quite moving. See here for a description on how our heart-strings get pulled. And just in case you haven’t had enough sweetness and love for one day, I will let you go and look at brave and beautiful by a company selling hair products.

Ok, so I have mixed feelings about these. A recent article on US advertisements on disabled people points out that disabled people aren’t here to inspire you:

If their ads make people look at disabled people a little more positively, then I can see there’s a benefit. I just wish that we were being encouraged to admire them, rather then feel inspired by them.

These adverts from Indian companies are also coming close to being what Stella Young would have called inspiration porn. In the life insurance advertisements, disability is being used to exaggerate the dependence of the child and the responsibility of the father. Implicitly this is surely tapping into the idea that disabled people can’t look after themselves: so you’d better buy some life insurance before it happens to you. And, oh, yeah, to film the coffee advertisement they met a bunch of comedians that actually stammer but of course you wouldn’t use them to act the film, would you?

It’s easy to attack. But on the other hand I feel there’s something important that these advertisements are showing about attitudes towards disability in South Asia; and quite possibly the advertisements are contributing to changing the way people see it. In these stories disability here is acknowledged, and even more than acknowledged – #MyFamilyMyPride is the tag of the dancing girl advertisement. Brilliant that we feel pride in a daughter in disability where so often it is assumed that the default response would be to hide and deny. And, to a certain extent, what the disabled people themselves want to do is being respected, encouraged and celebrated. The daughter wants to be a dancer? The father will support her to do that, not hassle her into marrying the right person or getting the right sort of job. These adverts are from a vision of modern India in which the traditional family has broken or changed, but its close values remain intact. It’s fantastic that disability is part of that vision, and contributes to realising it.

Thanks to Shashaank for sharing the original link and Rustom for sharing some ideas.

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“I have no use for sound, God made me deaf”

Beyond Silence is a short documentary made by Vidya Utlatay on the deaf community in India. Vidya writes on her website that the “film is a celebration of deafness”.

Several of the people in the film say they are pretty happy about being deaf, and even that they are happy for more people to become deaf also. A couple talking about their first child say that “if he/she is hearing, we’ll be happy,” and with a big smile they add that they’ll be even happier if the child is deaf. It’s great to see any group of people enjoying and happy with their lives and their communities – and it’s even better to see this when it’s a group that faces the challenges that the deaf do in modern India.

Part of their happiness is clearly an assertion about the various choices they make, and the impact those choices have on life, work and play. Which is better – sign-language, hearing-aids, cochlear implants? This is an active debate in rich countries also and the documentary shows some Indian twists on this debate. Cochlear implants are accused of being a money-making venture for doctors – an accusation that is much more relevant in a country with unregulated and often opportunistic health-care providers. Interesting experiences with hearing aids are shown – how children will use them selectively and then be punished by parents and teachers for doing so; even when the hearing aids are uncomfortable and of limited help. Someone laughs and says she only uses the hearing-aid to listen to music.

Now there is debate even in resource-rich environments on whether sign-language or cochlear implants are the way forward (see for example a recent exchange on learning to sign). The documentary doesn’t explore this, but the argument for investment and diffusion of sign-language is even stronger in a country like India where resources for effective treatment or assistive technology are fewer. The argument for promotion of sign-language in India is based on economic terms, too.

“It is against my culture to speak,” says one of the participants, who like the majority of people in the film are proud of and celebrating deaf culture. It’s great to have a video that shows some of the richness within the signing community.

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Way more than we thought: a father, a mechanic, a disabled person and beyond

A few months ago, I’m speaking to Mosharrof on the phone. I’d never met him, but I did know him from a video: A father, a mechanic, a trainer, an entrepreneur and disabled – in that order.

It’s less than a year after the video was filmed and Mosharrof is no longer working as a fridge-repair mechanic. When I ask him why he stopped, he says “it’s because I don’t have hands.”

Not only has he changed his profession, but it’s because of his impairment. That seems pretty bad for him – and it wasn’t at all what was understood in the video. The video was pointing out the opposite, that he was an example of someone who had gotten past his disability. I don’t mean “get past” it to say that one has “overcome” one’s disability. The nice thing about the write-up is that it’s not based on that cliched story of overcoming. It isn’t the story of an accident, a painful period of readjustment and an inspiring new birth. All those things are there, but in a different order: it starts out with what Mosharrof has managed to do and what he’s achieving in the present. The whole point is that the fact he doesn’t have hands isn’t the way you understand him as a person. Except now, on the telephone, he’s telling me it is.

A man sits smiling in a chair, in a small office. He wears a suit jacket and he does not have hands.

Mosharrof in his new shop: A father, mechanic, moneylender and many other things too.

So off we go to meet him. He has a shop now, where now he apparently sells mobile-phone credit. This is also something that turns out not to be the case. While we’re talking to him in the shop, several people come to try to get mobile-phone credit and he turns them away quite abruptly saying he’s busy. What he’s actually gone into money-lending. He gives loans and takes interest. How many loans do you have out, I ask, 10 or 20? He gives a number, and it’s over 200. He took the capital from his fridge business and he’s giving loans for small businesses.

Now, I can get over him not having hands, but I can’t get over the fact he’s not a fridge mechanic any more. This time he gives a longer story of something else he had also mentioned on the phone. He ran his business by training people to work with him. He would “teach them, feed them, give them a place to stay” and then – once they had learned – they would leave. Because they leave he doesn’t want to continue.

He seems to be doing pretty well with his moneylending. He’s also busy and enthusiastically setting up an organisation to help other disabled people. He’s collected the names of over 200 people with disabilities and he’s trying to help them by linking to services, like getting free wheelchairs.

I, still on the fridge-repair, ask him whether I should feel happy or feel bad he stopped doing it. He avoids the question. I ask again. He says yes, of course I should feel bad that he stopped his job as a mechanic. He then cheerfully goes on to say that he still has lots of offers to do fridge repair and can go back to doing it anytime he wants. And he’s going to go on teaching, too: “from now on I’m only going to teach disabled people”. Oh, and another thing he’s involved in: local politics.

So I’m still not sure about how we should feel. The problem of apprentices leaving is a common problem for businessmen in Bangladesh, and certainly the fact that Mosharrof doesn’t have hands will have made this a significant difficulty for him. But it’s impossible to feel bad for someone so engaged with his present and future and so entrepreneurial. He explains his business choices excitedly and tells us why he got the shop in the location he did, the deal he did to get it and plans to expand. He shows some papers he got on how to apply for money for his disability organisation. Today, they are unfamiliar to him, and he isn’t sure what’s in them. He seems like the kind of person who will have it all figured out by tomorrow.

Time for several disclaimers! I wasn’t directly involved with their production, but the video and case study were made by a project I was working for, and I’m still working for the ILO in Bangladesh. When I asked Mosharrof if I could share this story he said yes and asked to be put in touch with foreign organisations that could help fund his NGO: so if you have ideas here, please do let us know! Obviously opinions here are mine, and anything I tell you about Mosharrof should be taken with a pinch of salt. After all, by the time you read this, he may be doing something else entirely.

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Faces of disability in Bangladesh: medicine, mushrooms and politics

All the usual suspects are here, at the disability fair. Outside I meet some NGO/charity types that I know. Walking in, a colleague in government greets me. Before long, I’m talking with some disabled people, too. Everyone’s here, for a week-long celebration starting on the International Day of People with Disability. The field of the government’s disability foundation has been repurposed to have stalls around the outside.

Advertisement showing a beach, with a boy using a wheelchair in the foreground. Text reads "Mind Needs a Gateway to Happiness: Just go for it".

The Bangladesh Tourism Board is promoting travel of disabled people? Brilliant.

It’s very exciting to begin with as I see my old friends and make new ones. I test out the few pieces of Bangla sign-language I know, and sit in the stall of the government factory that makes plastic products and bottles water (one the buyers of the water they produce is the Prime Minister’s Office).

A table with plastic cups, buckets and jugs. Two young men on each side, talking in sign-language.

Bargaining using sign-language.
Maitri Shilpa is a factory staffed by people with physical and hearing disabilities.

My friends and previous colleagues at HI Bangladesh put up a big poster on why “Inclusive Community” = “Removing Barriers” + “Support Services”. They also brought a scale model of a wheel-chair accessible shop.

A replica of a thatched shop with a ramp for a wheelchair to be able to access. A man sits on the ramp. Tea-kettle and sample products also visible.

This is a model of a small village shop that a wheelchair user could get into and sell biscuits/chips/tea from.

Next door I pop into the disability foundation’s own stall. Here they have some medical equipment, and appear to have a room where they are actually seeing people. “What therapy can I get?” I say, as a joke. They take me seriously, ask where I live and discuss which center is closest to my house. “What problem do you have?” asks a kind lady. “I don’t have any problem,” I say abruptly, limping away.

Actually I do have a problem. My problem is that I’m so obsessed with showing the social side of disability that I sometimes find the treatment of it as a medical condition quite unsettling. I know that I need therapy, and I know lots of people here are in serious difficulties because they don’t get health or rehabilitation support in good quality.

A wheelchair displayed on a small podium, with two prosthesis in front of it. One of them has a sign that says "transfemoral prosthesis".

The Center for Disability and Development showcases assistive devices.

This is the thing about the faces of disability in Bangladesh. All the different ways you can understand disability are present, whether from the point of view of a medical problem, or something that results from social barriers, or something connected with moral worth. This big wheelchair is in front of the stall of an organisation that can explain the social model of disability very well.

The main theme of the stalls though, was handicrafts. All the organisations that could had products “made by disabled people”. Bags, wooden puzzles, plastic cups, clothes, mushrooms, decorations, clocks, etcetara.

Table with wooden puzzles, a wooden angel and house. Table with woven baskets and other hand-made products. Table with mushrooms on.

There were quite a few schools for disabled children as well. Mostly they seemed to be for children for intellectual impairments. There are schools for children with hearing impairments, but I didn’t see them at the fair.

Screen showing children in uniform lined up in a field. On the sides of the screen are hand-made products.

By the time I’d gotten round all of the organisations I wasn’t sure whether I’d gone backward or forward. I wasn’t sure whether we were talking about empowerment of disabled people, the treatment and cure of disabled people, segregation of disabled people into special schools, the wonderful talents of disabled people (and children) to make handicrafts, or what. In some way we were talking about all of these things at once, which is one of the reasons why working on disability here is so fun and so messy. On the one hand all the handicrafts started to feel quite stereotyped. On the other hand, some of these handicraft stalls were looked after by disabled people who seemed pretty empowered to be there.

One of the stalls apologised to me that they didn’t have anything to show or sell but for a book and a CD. I was quite relieved that I wasn’t seeing more handicrafts. A friend pointed excitedly towards the sign they had made and urgently put a leaflet into my hand.

A sign in Bangla hanging at one stall. In the background you can see the mushroom stall.

PNSP is the latest DPO federation in town.

You can see the neighbouring mushroom-stall in the background. But this organisation has other ideas. The sign reads “We don’t want the representation of disabled people to be in the control of non-disabled people”. The leaflet is densely written, but has a simple title and direct text:

We want to take our decisions

The idea of most people in this country is that disabled people cannot do their own work. That disabled people are dependent on others to survive. And in decision-making, there is no question of their participation. As a result, non-disabled people are controlling the lives of disabled people.

That’s my translation of the beginning of two pages of this tightly written Bangla. It’s clear that in part this is a protest against some of their colleagues present in other stalls at the fair. I wouldn’t put it so strongly myself, but I completely agree on wanting disabled people to be able to make their own decisions. Are health services, assistive devices, handicrafts and self-determination going hand-in-hand towards the same goal? This fair brought us all together, but I wonder what differences there are among us.

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Making Mistakes: Talking about Access in an Inaccessible Way

I was speaking English…

I was giving a session on disability in Indonesia. A translator was turning this into Bahasa. There’s plenty of space for confusion in that alone. But a further translation was also being doine, by another interpreter, who lip-read the Bahasa and put it into sign-language.

The training was for 40 disabled people who’d just completed a skills training program. These 40 people had come from all over Indonesia and had been together for a month or two. We were preparing them before they started work and I was telling them about the social model of disability. Some of them had a high level of education and could speak with me in English, others hadn’t. Something over 10 people were using sign-language to communicate, and they too had different levels of proficiency using sign.

Ok, I told you all that as an excuse: not everyone could follow what the session was about. Plenty of people did, though, and it was pleasing to see how quickly they could identify the difficulties they had at an individual level (having a leg problem, not being able to hear) and those they had at a “social” level (difficulties using public transport, not being able to find work). Many of the participants were able to describe this well by the end, and the hope is that this idea will help them see their lives differently. But there were several people who didn’t follow.

Talking about access needs, but not solving access needs for people there.

It was clear by the end that not everyone had followed what was going on, and that difficulties in the translation from English to Bahasa and then Bahasa to sign-language had been part of the difficulty. This was upsetting. We were busy talking about social exclusion but hadn’t found a way to effectively include everyone in that discussion. It was hard to admit at the time, but my own role was part of the problem I am supposedly trying to address. And it’s hard to admit that even though I’m an “expert” some of this was new to me.

There are various ways that we didn’t provide good accessibility for the trainees. One of the training centres they were in was on the 2nd and 3rd floors, and our sign-language interpreter wasn’t available to all the trainees all the time. Nonetheless, both physically disabled people got up the stairs and the deaf trainees were able to learn also. The people giving the training course said that communication was hard at first by they learnt to do it in different ways. So in fact this shows that even when you don’t have full – or even partial – accessibility in place you can still do something effective and useful.

A thin line between inclusion and exclusion.

My session was one of the cases that showed the limits of the inclusion. “Inclusion” of different trainees was partial, and always at risk of crossing over into exclusion. It was clear from the way my colleagues and myself were communicating that people were often being left out. In the closing ceremony we did to celebrate having done the training for disabled people, I think there were parts that the people we were celebrating couldn’t follow, again because we didn’t pay enough care into putting things into sign-language.

I know from my own life that inclusion is a continuous process, something relevant at each set of steps or when I stand up from a chair or when we are going somewhere. I know the kindness and love of people looking out for this, and I know how painful can be when people forget or ignore it. Exclusion can be sudden, personal and we can react to it with anything from laughter to patience, fear or anger.

We can’t expect true accessibility and inclusion to come about as mere add-ons.

Just because we’ve gotten a sign-language interpreter doesn’t mean that deaf people will be able to follow everything. We needed to slow some things down and deliver some things slightly differently to make sure everyone could follow and participate. The colleague I was working with pointed out to me the extent of the problems in communication and suggested that an alternative would have been to do individual or smaller-group sessions for some of the participants. Good idea: not everyone is going to be able to follow a group session at the same speed. We know this clearly from learning in schools, but often we don’t think about this when we’re designing a training and identifying the time or resources we need for it.

I wrote this post in the first person because it was an important realisation for me. I realised how many of the communication styles I take for granted don’t work for everyone. I know from these trainees that I can’t just walk into a room, start talking, and expect that everyone will follow. Even when people are following, then there are those getting left out. These group discussions are such a staple of development work – we’re always doing some sort of training, committee, or focus group discussion. In Bangladesh I’ve learned to speak Bengali as one of the ways to make sure I communicate better with people. That’s not enough. My experience from both this and other meetings is that I (and many of my colleagues) have a way to go if we want to facilitate these sessions in a fully inclusive way.

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