An Alternative Perspective

When I was on my first visit to Thailand, a conversation with a Thai colleague was interrupted by an urgent phone call. Apparently the police had stopped a Thai friend of his, under the mistaken belief that the motorcycle he was riding was stolen. This motorcycle rider happens to be deaf. He is also fit, and rather well built. The ensuing fracas had resulted in the hospitalisation of four policemen, and the incarceration of the supposed perpetrator of the “crime”. Fortunately, the motor cyclist was well connected, and was probably free well before his “assailants” were out of hospital. Loss of face by the police, individually and collectively, probably had something to do with the outcome.

I am a wheelchair user, and have only been visiting Thailand for two years. For the past two months I have been living with, and occasionally travelling with, a family who live in the outer south west of Bangkok. My host has a non air-conditioned house with a traditional Thai bathroom, and we are surrounded by noise, filth, stench, and wonderful aromas. The family is an integral part of a rich social network of Thai working class people.

And perhaps someone with a disability should respond to recent comments on the website about Thais and disability. Let me share a few anecdotes about a few people with disabilities I have met, the things I have seen, and talked about in my Thai travels, and my perceptions, constantly changing, and partly based on what I am told by Thais with disabilities. I’m no expert, I’m just giving of my experiences.

There are the simple answers:

Thai hill tribe people do not have the issues of including people with people with disabilities in their communities. Those who visit notice that you never see a hill tribe person with a disability. When questioned, hill tribe people say that they do not have people with disabilities. No-one can say why. Yet people from the hill tribes have the same genetic makeup, and frailty, as the rest of the human race. Think about it!

And the more complex:

I’ve had Thais around half my weight struggle to get me up narrow stairs on to regional aircraft, and up to dinner on the top deck of river craft, and I’ve had security guards at the local large department store refuse me access up the escalator (I use escalators all the time), so I cannot enter. Mai pen rae, come back later when they are off duty.

Thais, I have found, seldom talk about attitudes to people with disabilities – unless they have disabilities themselves. Probably partly because they do not know that they have an "attitude", and perhaps because they are Thai – after all, Thailand is the best place in the world to live, isn't it, and there is the face issue. So it is the experiences, and lives of people with disabilities, which might inform about attitudes.

I used to complain that every disabled persons' toilet I came across (and there aren't many) was locked. Often it took some time for the key to be found. Then I had the misfortune to have to use a few unlocked ones.

At a large Bangkok market, there are toilets where the signs say that users must pay 1 baht, and that there was a toilet for the disabled. I roll in the door, no attendant is visible. Odd, I think at first. The disabled toilet is occupied, so I wait, until an able bodied person emerges. Then a nearby stall holder rushes over and pushes past me, which seems strange, until I see that she is removing a bicycle which would have prevented me from entering (now I wonder how much rent she pays for the convenience?). I enter, the floor is awash. And on the seat, not one set, but many sets of muddy footprints. Perhaps one wouldn't mind so much if they had removed their footwear.

Personally, I cannot say whether use of regular western style toilets as squat toilets occurs often. People tell me not, though I have read one or two anecdotes on the net about it happening. My experience is that it happens in about one out of every two unlocked disabled toilets. <This is my everlasting memory from Chris Moore's excellent novel "The Killing Smile" when he talks about a little upcountry girl in a foreigner's hotel room using the Western toilet squat style – Stick>

Two explanations spring to mind – either there were many ignorant people from rural Thailand at places like markets, who don't know any better – or – people do not want to catch whatever the disabled might have. Ignorance and superstition abound in Thailand….

In my time here, I have been invited and welcomed to many celebrations and functions, but I am NOT allowed to attend funerals (and this in a family I think to be somewhat enlightened). My presence at a funeral would apparently bring bad luck.

Mae

I met Mae (not her real name) in Chiang Mai in January last year, in a bar where I stopped for a drink in the heat of the evening. Mae was a stunner – she rushed over to me – “hello hansom man” – she walked with a bit of a limp, and I noticed her hands were a little misshapen. It turned out that Mae was in her early 30’s, had progressive rheumatoid arthritis, really could hardly walk at all, and had not had a man in her life for many years “because body no good”. Parents both dead, no family support, so her friend who ran the bar paid her 3000 baht per month to hostess. Of this 2000 went for rent, and she lived on 1000 baht per month. She had to pay for her own medication, and was having difficulty because the antiflamitories she needed had destroyed her stomach lining, and she could not afford modern medications which do not have this side effect. And so, a life of pain ….. but Mai was full of laughter, merrily teaching me rudimentary Thai during the couple of evenings I stopped by. I emailed her photos, but after her first email thanking me for them, nothing.

I returned in May last year, the bar had changed hands, no-one knew where she was. Then, a couple of months later, an email from someone telling me in faulty English that Mae can no longer leave her room, some days her friends bring food, some days not.

Some authorities do try

In January, in Chiang Mai, the authorities replaced the footpath pavement and installed tactile tiles for the blind, along the road leading west from Tha Prae Gate.

Four months later, along just the one block that I saw, a telephone company had installed a head height pedestal mounted phone overhanging the tactile tiles, and 25 paces on, a street light pole was dyna bolted to the tiles. Nothing unusual about this, such things happen everywhere in Thailand.

Brich

Brich sits astride his 3 wheeled motorbike outside a popular temple in regional Thailand, selling lottery tickets. He looks like any other lottery ticket seller, until he thrusts his urine bag into view. He is in his twenties, a paraplegic as a result of a motor accident a couple of years earlier. He identifies me as having the same disability, thrusts his bag forward, and calls “me same same you”! He works hard, my guide informs me – he is there every day. Turns out Brich’s home is one room, and because he can no longer sleep with the family on the floor, he uses a narrow canvas stretcher. He has a wife and two small daughters, and is terrified of losing them, because he can offer them no future. “All money gone” – medical related costs, I think – “wife working, but money gone”. Brich wants money to start a business.

People see a wheelchair, and think how sad, a person cannot walk. They fail to see pain, the issue of spasticity, the incontinence, not to mention the social issues ….. and fail to understand the costs. I don't know Brich's ongoing medical costs, but I do know that my medications retail in Thailand for 18 000 baht per month, add on another 3 000 baht a month for the incontinence solving costs.

The government lottery sells bulk lottery tickets at a discount to people in wheelchairs, which explains why so many have this job. Because there is no safety net, no social security, or compensation on a scale to meet disability related costs, people with a disability must work, or be supported by their family networks. While there are schemes to help some into employment (small business loan schemes, and massage schools for the blind, that I know of) and I am no expert, such niche and limited employment opportunities would not seem to me to be able to overcome significant disadvantage experienced, particularly in Thailand.

Anne

I met one young woman with disability at a Bangkok conference last year, there doing voluntary work, work which Anne had been doing for some time, having finished a degree, and being unable to find a paying position. By chance, my hotel manager, who had a mother in a wheelchair (and thus a changing perception of wheelchair users), had happened to mention to me that it would be good if she could employ someone with a disability. I had been telling her how people with disabilities often make excellent employees; they find it so hard to get a job, that when they get one……. And so it happened. But employment opportunities, for people with disabilities, at a higher level, seem limited by all sorts of factors.

Marriage

I can say little, but one issue in particular stands out – it is mentioned to me again and again. The perception is that a person with a disability is not likely to butterfly. Apparently a BIG issue for many of the women who have talked to me.

Ning

Ning has a mild intellectual disability (an early childhood acquired brain injury, I think). She has never been to school. She lives with a poor family on the fringe of a large town in central Thailand. In her late 20’s, she spends her time now in the family home, doing housework and watching TV. She seldom ventures more than a couple of hundred metres from home.

Mae's Son

Mae, once married, but a single mother for the past 15 years (no support from the father), has a son who is, I believe, mildly autistic. He has never been diagnosed, probably a good thing, because had he been, he probably would have been sent somewhere else for schooling. Now 18, he has reached the limit that his secondary school can offer, still unable to read or write very well. However, he is extremely artistic and musical. He has learned to use a computer for drawing, and is highly skilled at retouching photographs, to the extent that his friends pay to have photos altered. Spends hours and hours at the computer, just drawing. He’s been to trade school, and learnt how to etch photos onto glass, but there is no-one who seems to know how this might help him gain employment. Now he attends weekend school, there is nothing else available for him.

What has the future to offer this boy? Mae has many friends, but does not have networks which extend so far as to find him employment in his areas of expertise. She expects that he will find only a menial job, if that, when he finally gets his paperwork through. This is a mother with only primary level education, who moved to Bangkok 15 years ago so her sons could get an education, and can’t wait to go back to rural Thailand. Mae's elder son is attending 2 universities simultaneously, and she will do anything to find the money to allow the boys to complete their education.

Nok

Nok is in her late 50’s. She spends her days lying on a bed on the front porch of the family home on the outskirts of a large town in Sukhothai province, at night the bed is rolled inside. Nok had a stroke 4 years ago which has left her paralysed down one side. After 3 months in hospital, she was sent home, presumably to die. She still has a tracheometry (throat breathing tube) which is taken out and carefully cleaned each day by the family (why, I cannot understand, but who am I to question the doctor she sees every month). No physiotherapy or OT available unless paid for, and unless transport available, which it is not. Many have offered to cure Nok and make her walk again. Religion, massage, a variety of creams and diets, nothing has helped – “money gone” (miracle remedies abound in Thailand, I am offered them too.)

But Nok still has her voice (albeit when she presses on her throat to close the tracheometry tube), her position as matriarch of the family, and others to do her bidding. It is so easy to slip into western value systems, and see her as having had all her independence stripped away.

When I first met Nok, she was on a foam mattress, which was slid in and out of the house. Nok had been sent home using disposable diapers for toileting, which was costing the family 10 000 baht per month, placing a terrible financial burden on the extended family, and requiring her to be lifted many times a day. Most of the family now have back problems.

One of her daughters observed that I use a portable commode chair, and in discussion, an idea was formed. A bed and bed level commode were constructed, and because Nok has full sensation and knows when she wants to go, one family destroying problem was solved, through chance encounter with a farang.

Members of the family are concerned that Nok’s unusable hand is not the shape it should be. Now, because of my own impairment, I know something about the shortening of muscles and tendons in limbs that do not function. I suggest that a resting hand splint may be needed to counter the shortening process, or Nok will develop a “claw” hand, and it may well be painful (she still has sensation). I download some pictures from the internet, and offer to find out more, to get a splint when I can. But no, Thai massage will fix it.

Nok is already experiencing pain in her immobile leg, which shows some sign of distortion. I wonder if this is due to the same problem, but hesitate to say much. Nok is having Thai massage several times a week.

Maybe Thai massage will overcome these problems, but I’ve had a few Thai massages from people who’ve been highly recommended, even been trained at Wat Po. And I’ve yet to have a Thai massage where tendons and muscles of my non mobile limbs have been stretched for long enough or effectively, in my opinion. And this after I’ve been slack for a few weeks (it’s so damned hot, and I’m on holiday), I have not done my stretching, and I can feel things tightening up to the extent that I’ll be in trouble if I don’t do something soon. The massager should be able to feel this too, if what I am told again and again about them is accurate.

And so much more could be done to rehabilitate Nok! (my western values again). But the family is slipping into deep depression where she is concerned – it's now "up to Buddha" what happens.

Nok's husband supported the family by making and selling beautiful cane fish traps. 250 baht for a day's labor, a decent income in rural Thailand. They were made from the bamboo growing in front of, and shading the house, a resource which had been nurtured for more than 50 years. This way he could also stay home and look after his wife. Bamboo shoots were also harvested for food, occasionally for sale. Sometimes people offered to buy all the bamboo, offers always turned down (bamboo is a sought after resource in those parts).

Many years ago, Nok's father had subdivided his land so that each of his daughters had land, not realising that in subdividing, the land put aside for access (with a picturesque vehicle track winding through the bamboo and trees) would one day become a government road. Early this year, machinery appeared unannounced, and the bamboo, jack fruit trees and mango trees were all bulldozed and burnt, to make a short, dead straight, dead end dirt road, complete with a 4 metre deep ditch to take away the floods, floods which have never occurred before.

I’m told that Nok’s husband and father were very, very angry. This probably indicates that the tragedy goes far, far deeper in terms of Thai values and roles, than western values would indicate. I had been told, long before this happened, that in these generations of the family, anger is never displayed. Issues are always discussed, resolved, or accepted.

Family income now comes mostly from one of 5 daughters, who has married a farang, lives in England, but her husband keeps a tight hold on his wallet. Another daughter is married, works hard supporting her husband and daughter. A third has inadvertently become a minor wife, the teacher with whom she has 1 of 2 children turned out to be married to someone else, usually lives elsewhere, and contributes little. The fourth married young to an older rich Thai, so she could give the family a future. He turned out to be a serial butterfly and gambler, now has little money, and diabetes (probably the result of his lifestyle). The fifth has a disability, lives at home, so food must be found for her too.

Oot

At sunset yesterday, I was sitting at the corner near the home of my host, eating roast squid. The owner of the flats opposite had returned from Songkran with a bag of squid, and was roasting strips on a grill on a small charcoal brazier, and neighbours and their children gathered around to eat the delicacy. Someone else produced a couple of large river fish, and everyone talked and ate, children buzzing around on small bicycles, almost like the flies that are being shoed away from the cooked and cooling strips of fish.

Another handcart trundles by, the masked trundler inspecting each one of the overflowing garbage baskets in the soi for any scrap of cardboard, paper, or plastic.

When I finished eating – aroi krap, in krap, copun krap – my host beckoned for me to accompany her along the soi. Earlier in the day she had told me she was going to have her hair, which was cut yesterday, dried and styled. She’s off up country by bus tomorrow, so must look her best.

Now I knew there was a man somewhere about who could not walk, because my host’s sister had dropped in a couple of days before, after giving him Thai massage. But I was not prepared for what I found when I rolled into a house I had passed dozens of times before, in the 2 months I had been there.

This home looked no different to the one I was living in, or any others in the soi. A high concrete wall with a gate, a row of potted plants, and a couple of banana palms and a tree in the tiny amount of soil – the rest concreted over. The tree probably some kind of tropical fruit tree, my host has pointed out a half dozen different fruits besides bananas and mangoes, now ripening on the nondescript looking trees in the two hundred metres of this soi. I roll over a couple of 10 cm. steps in the concrete, into the home, a one story concrete building, and ah! Air conditioning! A pleasant relief from the high 30’s heat and the humidity, which are unpleasant even at sundown. One of the few air-conditioned homes around here, says something about the affluence of the family, I thought.

Only one room, dimly lit, where the family obviously lived and worked – plates and cooking utensils on the floor (the cooking area is usually outside), a rack of clothes, the widescreen TV one comes to expect, the stereo / karaoke machine winking and playing Thai music, a couple of beds, Buddhas on the wall, an illuminated hairdresser’s mirror extending halfway across the room, and a couple of upholstered chairs, one with hairdryer attached. Perhaps more than the usual amount of clutter. And filling one wall, plaques, citations, pictures of a well built Thai in police uniform, and a few pictures of family.

I am introduced – sawasdee krap – I recognise the wife, she often drops by for a chat with my host, and always greets me. Then sawasdee krap to one of the sons, and a grandson. And there on a low bed in the gloom lies the husband, Oot, a man who seems the same bulk as me, just lying there.

I come to understand that Oot is 47, was in the police force, but not of high rank, then worked in a hotel before having a stroke 2 years ago due to high blood pressure. Communication is difficult – my host is too busy having her hair done to interpret for me, and Oot can clearly understand English, but the stroke has affected his speech centre, and his words are slurred. He still has good motor skills, can sit up and move around the bed independently and the family expects that with Thai massage, he will walk again. I am told that he has a wheelchair but seldom uses it, that he spends the day lying there, and, of course, there is the extended family for company and support (but then it is so easy to make assumptions).

The faith that Thais put in their massage confounds and depresses me. But it feels like there is nothing I can do. I can only be an example. I willingly pay the 30 baht for the 30 minutes of hair styling, and leave with my host, depressed and thoughtful.

Oot, so less disabled than Nok, is shut away in a corner in the gloom. Shut away from his community, and to what extent from his family? Nok continues to play a role in her community, passers by stop to pay her their respects, she still has her role as family maturate. Maybe Oot has nothing left, nothing but the hope that massage will let him walk again one day.

In western culture there are several ways an individual handles acquired disability. In Thai culture there seem to be so many more issues. I ponder whether a wheelchair is seen by some Thais as the ultimate indignity, symbolising loss of independence and power, or is it deeper – public humiliation and loss of face?

On Getting Around

Another reason people with disabilities remain invisible in Thailand is that the transport and infrastructure is just so inaccessible. In Bangkok, car or taxi travel is almost the only available option (although the skytrain has a few accessible stops). Buses and trains are completely inaccessible. High kerbs with few kerb crossings, overhead walkways with steps. Steps everywhere. For the blind, independently using the tactile tiles that are on some pavements would really be anteri (dangerous). So usually people with disabilities can’t or won’t travel much. Sure, you will see some begging on the street. But most will be invisible, in the family home, or never leaving the local environment.

Attitudes

I wrote earlier about Thai attitudes to disability. Live with a Thai for any length of time, and you find out just how entrenched Buddhist philosophy is, and just how superstitious and at times, seemingly irrational a Thai can be.

Behind or underneath many Thais' attitudes to an individual with a disability lies the Buddhist belief that what happens to us in this life is determined by what happened in a former one, if my understanding is correct. Don’t get me wrong, on the surface, I have found Thais wonderful in the way they seem to react to my specific disability, with the acceptance and help I am given again and again, on a daily basis. But I'm different, a farang with money, who is independently doing things ordinary Thais see as impossible. But if I am with a companion, it is somewhat different story.

The Thais don’t know they have an attitude issue. It is so much a part of being Thai, that they do not understand what you are talking about – unless they have, or someone they care about has, a disability. Then, it becomes a topic of conversation, probably not with non disabled Thais, but certainly with people with disabilities and members of their families. Thais with disabilities certainly experience the consequences far more than I do.

And I can’t help the feeling that disability issues are to the average Thai a bit like the dog’s droppings on the ground. I was recently at a “party” at a wat, to celebrate a young man becoming a monk. A 10 course outdoor sit down meal, and there, between the tables, dog’s droppings. No-one seemed to notice, no-one cleaned them up, but absolutely no-one stood in them.

The negative attitudes to disability I experience are sometimes more institutionalised and subtle, like when I turn up at a 5 star hotel and the "disabled room" bathroom door is too narrow, it is my problem. And some of the hotels I have stayed in present this issue again and again, to people in narrower chairs than mine, yet they claim to have facilities for the disabled!

In my country, when I cannot fit through somewhere in my wheelchair, I sometimes say I am too fat, and it relieves the tension, people know I am being facetious and there is a disability issue, and sometimes it gets fixed. In Thailand, I AM too fat (and farang), and it’s my fault. I’ve even had Thai people in wheelchairs comment that they (hoteliers) can’t make doors wide enough to accommodate westerners.

Then there is the issue of face. For example if it is effectively pointed out that something is wrong, then someone can lose face.

A trivial example: One hotel tried to provide some facilities for me (the reason is simple – the manager’s mother is in a wheelchair). The staff install a hand shower (in a bathroom that does not have access for my wheelchair). But the hose kept coming out of the handpiece. I go down and complain to the desk (not wanting to go to the manager) that it has not been properly installed. The smiles disappear, and it takes a day for someone to come and put the hose back, exactly the same way. I have had time to reflect, this time I go to the desk and say that this stupid farang has broken the hand shower again. Everybody smiles (the farang seems to have lost face, he won’t tell the manager now, and everyone knows the game that is going on), and within half an hour the shower is fixed, properly this time. Coincidence?

Disability activists in Thailand are not unknown, but I can see they have a much harder time of it than in western countries. If it is bluntly pointed out that something is wrong, someone can lose face, and those who cause major loss of face better watch out, be they the carrier of the message, or the person who caused the complaint in the first place. This can become really, really, really serious! Thais naturally develop extensive networks, and anyone can find out where anyone lives.

And it is really hard to be an activist when those who you identify with live in a culture, where you are shown, from an early age, that acceptance of your lot is a virtue. So hard to fight oppression, when the oppressed have the same belief systems as the oppressors, so hard to fight for rights when your peers don't think they have any.

And so it is hardly surprising that disability issues are not widely known, because individual cases do not often appear in the press. Disability issues hit the press when there is an international conference in town, or there is a positive development. Conferences and positive developments make everyone feel good, give the impression that everything will be OK, and nobody loses face.

Then, of course, there are the stories where the person with a disability can be made fun of, or worse.

New Year

As I write this, Songkran has just finished. I’ve had scented water and flower petals sprinkled over me, and scented powder paste smeared on my face. I've been a target for many of the water and glue throwing adults on the street each time I've ventured out (and I have not ventured far), but surprisingly few children have squirted me. Fun and tradition, intermingled with power and face. Because they can.

On Thai roads, more than 650 killed, and over 36,000 injured in the 10 days, probably hundreds with serious permanent disability. Most of the killed and injured – males, between 15 and 19 . The normal Thai road toll is apparently half that, 30 or more killed a day, a staggering figure in itself (no wonder there are so many single ladies available for export, and other purposes).

Which sets me thinking again. In my country, for every 10 people killed on the road, there are perhaps 3 or 4 people with permanent spinal cord injuries (SCI). The rate would perhaps be half as much again were it not for the expertise of rescue and ambulance crews. And motorcycles, a prime cause of SCI, are nowhere near as common as in Thailand. The number of paraplegics (and quadraplegics) in Thailand must be huge. And that, and the high visibility lottery ticket selling scheme, explains why I see so many. But away from the tourist and begging areas I come across few other persons with disabilities. I have seen few with an acquired brain injury, and only a few amputees and a few blind people. And, come to think of it, I have not seen a person with down’s syndrome, and only one person with cerebral palsey.

The Thai medical system appears surprisingly good, from a medical perspective. It enables people to go on living, but from what I can see, unless you have the will and the money, the system seems to do little else for you. And I have a feeling that those who acquire disability will eventually go home with little rehabilitation. Maybe they will be supported by families, if they have them, and by their local community. Maybe they will lock themselves away, awaiting the miracle, or death. And so the issues remain hidden. After all, when you look at it from a Thai perspective, perhaps it’s their own fault!

And so

As I find out more about Thais, I find out more about me, my beliefs, and my own society, too.

We in the west have our own highly complex issues and beliefs about disability, many we can’t see because they’re ours. One tiny example: how dare people with disabilities have sex, let alone paid sex? It’s nobody’s business how an able bod spends money, however acquired, but for a person with disability to pay for sex! Now that’s beyond the pale, apparently. (Thais will be surprised by this!) An Australian (legal) brothel recently received national publicity by telling the press that people in wheelchairs can get in. There were pictures! Shocking! (And great ratings, so a great story?).

And another thought – how easy it is to read, talk or write about those seeking charity, people who may or may not have disabilities, and who just might be taking advantage of the good nature of others. Every experience, every story hardens the attitudes towards being charitable towards people with disabilities.

How about buying a trinket, or a lottery ticket, from the next seller you see with a disability. They are not asking for charity, and at least they are out there, just trying to make a go of it. The odds are stacked against them. You've certainly got better odds of winning than they have.

Stickman's thoughts:

Great stuff and a really good insight into part of life in Thailand that few of us see, and I bet even fewer think about.