Friday, 9 August 2013

Do you know some with a

disability? If you do could you tell them about and, if necessary, give them some assistance to access and complete the following United Nations survey? http://www.surveymonkey.com/s/XFID96
It is a survey about living with disabilities and disasters.
It was, rightly, pointed out to me yesterday that I had failed to mention this here and that I should have spoken up about it several months ago.
Anyone who knows me will know that my "day job" is concerned with the provision of low technology communication assistance for aid workers in what the United Nations calls "complex humanitarian emergencies". I am not going to explain what I do here. It should be sufficient to say that you have to be able to communicate with the people you are trying to help and that aid workers do not always speak the language of the people they are trying to help. Relying on interpreters does not always help either, indeed it can sometimes hinder matters.
There are also many other people who need communication and other assistance in disaster situations and they can sometimes be left out altogether. In some situations it is impossible to assume that the majority of people affected are literate or it may be that many of the males will be literate but very few of the females. The males may be bilingual. The women may be monolingual. In such situations putting up signs in camps directing people to assistance is of little value unless it is done in such a way that everyone can "read" it. Pictures and symbols will be used but even that can prove problematic. There are also all sorts of cultural, social, tribal, religious and other issues which have to be considered as well.
And then there are other issues which are often given far less consideration than they should. These are the needs of unaccompanied children (those who do not have an adult responsible for them), the needs of people who are very elderly and frail and the needs of people with disabilities. In the chaos following a natural or manmade disaster these groups are often the last to get help although they are the groups who need it most.
People with disabilities, particularly in countries with lower literacy rates, may not be able to access information about what is going on and may only be able to communicate with a very limited range of people. Communication problems are not just an issue for people with hearing impairments but for many other people with disabilities as well. Add mobility problems and medical issues to communication problems and there are many people who need even more assistance than is first recognised.
Even in countries where there are high rates of literacy and otherwise good disaster preparedness people with disabilities can miss out on vital assistance. Communication is a key issue even here.
If anyone is interested in further information the paper below is one I wrote several years ago for a conference presentation. The much more important thing however is to ask people to fill out that survey and inform the UN just how little assistance is available!


                                          Silent Voices: Special Communication Needs in

Complex Humanitarian Emergencies

 
Abstract

 
In Complex Humanitarian Emergencies there can be social, cultural, political and linguistic issues which reduce the capacity of people to communicate. Many people with disabilities also have a reduced capacity to communicate. In Complex Humanitarian Emergencies people with disabilities and others who have also suffered serious trauma are at still further risk of not being able to communicate. Unaccompanied children with disabilities or who have suffered trauma and also have a reduced capacity to communicate are frequently at extreme risk. There is a need for extensive awareness of those with special communication needs in Complex Humanitarian Emergencies and provision needs to be made to assist them at minimum cost.


Complex Humanitarian Emergencies do not occur in isolation from social systems. The often complex range of events leading to emergencies may be natural or manmade or a combination of both but they will still impact on the social system of the region in which they occur. Social and cultural customs can contribute to the spread of disease or to the introduction of social measures to control it. Political and linguistic differences or the refusal to acknowledge them can contribute to outbreaks of violence. Whatever the cause or causes these events all require that those responding to the emergency have the capacity to communicate with those they are trying to assist.

One of the defining features of such emergencies however is the failure of normal modes of communication. At the same time as communication has failed, or is failing, efforts are naturally focussed on rescue and relief where the capacity to communicate is essential. Rescue and relief efforts therefore rely heavily on a capacity to communicate as well as the other physical capacities of all those involved. (1)
The most frequent mode of communication in circumstances where other forms of communication are reduced or non-existent is speech. Despite this speech, and the visual forms which represent it, can be a barrier to communication. It will clearly be a barrier where there is no common language and levels of literacy are low. It will also be a barrier if the individual has a disability which reduces their capacity to use speech, or the visual forms which represent it, to communicate.

Good communication skills however can mean the difference between lives lost and lives saved. Lack of information is a major factor in the failure to adequately assist those in need. Micro aid workers Walter Mizner and Paul Leclerc are just two of many who have reported lives being lost due to communication failure. Mizner reported that villagers in Burkina Faso were not advised that a water hole had been accidentally contaminated by chemicals and, as a result, three children who swam in it died from the contamination, (J.Mizner, personal communication, May 22, 1997) Le Clerc reported that, while the bags were labelled with a symbol, illiterate villagers in Ethiopia were not advised that the seed they had received was not suitable to be eaten. As a result four children and three adults, already in a weakened state, who ate a meal prepared with the seed died and many others became seriously ill. (P. Leclerc, personal communication, October 11, 2003) When such tragedies can occur among groups who, while communication disadvantaged, are not considered to be at greatest risk the likelihood of harm to those at even higher risk must also be greater still.  

In 2005  a report commissioned by the United Nations (Groce 2005) found that children with disabilities were at increased risk of being victims of violence and abuse. (2)
Despite this the needs of at risk groups in Complex Humanitarian Emergencies, and especially of children with disabilities in Complex Humanitarian Emergencies, while being acknowledged, has received scant attention. (3) This has implications for everyone involved in a Complex Humanitarian Emergency but it has particular significance for anyone, and most especially a child, with a disability and any unaccompanied child whether they have a disability or not. If the issues can be even minimally addressed, especially in a cost effective manner, it may be possible to carry out rescue and relief efforts more effectively.
Many people with disabilities, particularly children with congenital or early onset conditions, already have a reduced ability to communicate due to the nature of their disabilities and a complex range of other social and environmental factors. Research by the author (2005) suggests that as many as 84% of people with a disability will also have a reduced capacity to communicate in at least one significant area of their daily life. (4)
In addition, events which give rise to a Complex Humanitarian Emergency
situation frequently occur in areas which suffer cycles of disadvantage because of their geographical and/or political location. One of the frequent characteristics of such areas is an already reduced capacity to communicate. Levels of literacy are often low. Education may be disrupted or not occur due to conflict, poverty or isolation.
Literacy rates in disadvantaged areas are also almost always lower along women than men and among girls than boys. Among children with disabilities they are often lower still. Makambe (1999) reviewed records for ten years of more than 2000 children from conflict areas who passed through a temporary refuge for unaccompanied children in Africa. Not a single child with a developmental or other congenital disability had received any formal educational training. At the same time she found that children who had been injured in regional conflicts had received education at the same rate as their non-injured peers up until the time of their injury.(C. Makambe, personal communication, 11 November 1999)   Davidson (2003) found that no male child with a visible disability in fourteen remote villages affected by the internal conflict in Afghanistan had received any formal education at all  In addition no female child was receiving any formal education.(S. Davidson, personal communication, June 13, 2002)  He considered these children to be at very high risk if further conflict broke out. (S.Davidson, personal communication, June 19, 2002).
Despite low levels of formal education in some regions where emergencies occur it is a mistake to assume that a person with a disability is not further communication disadvantaged or at further communication risk when a Complex Humanitarian Emergency arises. While children without disabilities in some less developed regions may have had little or no education they will have had wider contact with their community, will know more adults and have a greater knowledge of at least their immediate surroundings than children with disabilities. Hazarikah (1996) found that children without disabilities in two large Indian villages knew as many as five or six times more people than their siblings with disabilities.   (I Hazarikah, personal communication, June 2, 1996) Even if children with disabilities have had some education their level of educational attainment may be much lower or of a different nature. Hazarikah also found that, where any education occurred, it was designed solely to teach a craft and that eventual earning capacity was still negligible. (I. Hazarikah, personal communication, June 30, 1996) It is likely then that children with disabilities may already be communication disadvantaged in areas which are prone to events which lead to Complex Humanitarian Emergencies. 
Once an event, or series of events, which gives rise to a Complex Humanitarian Emergency has occurred all people with disabilities may be at much higher risk of decreased levels of communicative capacity. The reasons for this are both diverse and complex. While they apply to adults as well as children, it is necessary to recognise that, because as already shown,  children are an already at risk group and the effects on them are potentially more serious. Some of the difficulties giving rise to lower levels of communication and which can apply to all people with disabilities are:
            (a)    The person with the disability may not be able to move from their location to a source of information due to changes in the physical environment and/or due to their physical capacity to travel.
            (b)   They may have been separated from members of family or the community on whom they depend for communication with others.
            (c)    Members of the family may have suffered illness, injury or even death and may be unable to give communication assistance.
            (d)   The person with the disability may also be injured.
            (e)    There may be no common communication system between the person with the disability and those providing rescue and relief services
            (f)    Assumptions may be made about their needs and the information they require
            (g)   The person with the disability may fail or be unable to communicate his or her lack of understanding
            (h)   Information may be provided in a single way which is impossible for the person with the disability to access
            (i)     Information may be passed  or need to be passed through another source where it is filtered or altered in such a way that it becomes inaccurate
            (j)     there may be other social restrictions or taboos which, in conjunction with a disability, cause a disruption to the capacity to communicate.
            Disruption to communication because of a lack of ability to travel and move freely was observed by Planhol (2005). He found that a number of people with pre-existing disabilities who survived the South East Asian Tsunami were confined to their (sometimes damaged) homes and were unaware of what was happening in the community.  Of the 28 people Planhol found in one small area of Sri Lanka, 11 were between 12 and 18 years of age. All had very little knowledge of what had occurred and their understanding of the event was seriously impaired due to a lack of information as well as intellectual capacity. (J. Planhol, personal communication, March 3, 2005) Planhol also reported that two of those found had not had any contact with their community since the tsunami and did not understand what had happened at all. Both had been the victims of sexual abuse since the event. (J. Planhol, personal communication, March 5, 2005) Newell (2004) reported searchers finding numbers of frail elderly and children with disabilities abandoned in the Darfur region when other villagers fled. (C. Newell, personal communication, November 14, 2004) Khaulavi (2001) reported the finding of 9 children with disabilities abandoned in a village in Iraq when conflict caused other villagers to leave. Only one child was able to give any information about her family. All others were too young or lacked the intellectual ability to do so. (M Khaulavi, personal communication, October 28, 2001).
Dahl (2005) reported 15 children in a reception camp estimated to be over the age of five who were unable to make themselves understood due to a range of disabilities. In each case they had been separated from their principal carers and five of them showed signs of sexual abuse. (K. Dahl, personal communication, March 19, 2005). There were also an unknown number of other children who appeared to have event induced psychiatric disturbances which resulted in a refusal to speak. When they were given medical examinations further instances of sexual abuse were revealed.(K. Dahl, personal communication, March 22, 2005)  Bensimon (2005) also reported three children from the same family in a Pakistani village, all with the same congenital condition, who were unable to communicate freely with anyone because of the associated speech defects. Both parents, on whom they had relied for all communication with the rest of the community, were deceased. The girl had been sexually abused and, at age 12, was shown to be pregnant. (A. Bensimon, personal communication, November 23, 2005)
Failure to communicate can result in tragic consequences. Lecawasam (2005) noted that a critically injured eight year old child was airlifted from a disaster zone. No member of his family was found to accompany him. After his right arm had been amputated it was discovered he also had a hearing loss and had used signs to communicate. Had the medical staff been aware of the underlying condition greater efforts would have been made to save the arm despite the limited medical assistance available. ( R. Lecawasam, personal communication, November 1, 2005)
The hearing impaired appear to be at particular risk of the most complete breakdown of their communication systems. Their ability to communicate with the rest of the community is often already severely compromised and those who are able to interpret for them will be few. If rescue and relief assistance is being conducted by speakers of another language then those who use signs to communicate must, if they can find anyone to assist them at all, go through a double translation process when attempting to give information about themselves. (R Bazin, personal communication January 27, 2005) In the sometimes vital registration processes, without which food, shelter and medical assistance may not be available, this can be time consuming and may not occur at all. (R Bazin, personal communication, February 1, 2005; H. Grousset, personal communication, February 3, 2005) Furthermore, when an unaccompanied child is unable to make himself or herself understood it has been observed that adults in the vicinity, if not ignoring the child altogether, will take over and act without reference to the child. (R Compton, personal communication, January 11, 2005). They may even claim a relationship with the child that does not exist. (S Ramsaran, personal communication, March 18, 1992). Such claims can place a child at extreme risk of sexual abuse and other violent acts. (S Ramsaran, personal communications, March 26-28, 1992)
Those providing rescue and relief assistance or ongoing care may also make assumptions about the needs of the child (F. Amundsen, personal communication, February 12, 1994) and those assumptions may be inaccurate (F. Amundsen, personal communication, December 22, 1995; A. Janssen, personal communication, January 11, 1997). The results can include a child being removed from an area where there is family to care for him or her and children being taken by local officials and then, in the worst cases, abused or sold. (F. Amundsen, personal communication, February 12, 1994; C. Makambe, personal communication  May 8, 1988; J Menéndez, personal communication, March 27, 2003) In such instances it is vital for communication to be established with the child and basic information be recorded so that the child can be tracked. Too often this does not happen. (F.Amundsen, personal communication, December 22, 1995; J Menéndez, personal communication, March 27, 2003).
Just as in daily life elsewhere assumptions may also be made about the level of information people with disabilities require. While this should be an issue of concern at any time the consequences can be of even greater concern in the emergency situation. While all children may be shielded from some information, children with disabilities may be shielded from or prevented from obtaining information which can allow them to maintain contact with familiar persons. Rangarajaran (2005) found that a small group of children with disabilities had been separated, on safety grounds, from all other members of a temporary camp. In the confusion which followed these children were then sent to a different location. Several children had surviving family members in the other group who were willing to care for them. Language differences and the failure to provide any language assistance to the children meant that they were unable to ask where family members were and were wrongly informed that their family members were deceased. (L. Rangarajaran, personal communication, April 19, 2005).  
Older children and adults with disabilities may also be excluded from meetings about movement away from a location or the reconstruction of a community on the grounds that, as they are unable to actively participate they can have no interest in how this is done. Comrie (2005) found that three teenage boys with disabilities were excluded from meetings attended by all other males their age and older on the grounds of their disability alone. (S. Comrie, personal communication, April 24, 2005) Gao found that the decisions made about the placement of two girls of five and six who had limbs amputated were made without any reference to them. Both were sent to orphanages on the assumption that they had no family to care for them. This later proved incorrect. (Y. Gao, personal communication, July 16, 1997)
Mufwene (1996) found that, not only were young people with disabilities being excluded from decision making processes, they were being excluded from the outcomes. Five teenage boys with physical disabilities were excluded from a meeting to discuss who would have access to limited education facilities and then from the education facilities that were offered. Each had the intellectual capacity to benefit and perhaps become independent as a result. (A. Mufwene, personal communication, May 2, 1996).
Fernandez (2005) found that, while levels of illiteracy were high, there was a lack of pictorial information about services in reception centres and that reliance solely on verbal modes of communication caused unacceptable delays as well as contributing to the failure of some to gain access to goods and services which were theirs by right. Unaccompanied children were particularly disadvantaged and any unaccompanied child with a disability was in grave danger of not accessing any goods or services. (J. Fernandez, personal communication, March 22, 2005). When simple pictorial illustrations to indicate the location of services were made available there was a marked increase in orderliness noted by those delivering aid. Those delivering aid were then also able to uncover some of the abuse of those with disabilities and handle it without further tensions arising. (J. Fernandez, April 29, 2005). (4)
It is clear that there is a need to develop some simple, low cost measures that can be put in place to assist not only people with disabilities but all members of the community who are in need of assistance. This can have marked benefits for everyone. Van der Hoek (2005) reported a decrease in violence in a reception centre when visual illustrations of the entitlements of each individual was made available and recipients were asked to acknowledge that they had received them. (H. Van der Hoek, personal communication, July 19, 2005). Unfortunately there is often insufficient aid to provide for everyone and the most vulnerable will almost always miss out. (Z. Berger, personal communication, September 18, 1988;  R Wilson-Taylor, personal communication, October 19, 1991; J. Fernandez, personal communication, April 3, 2005)
In a Complex Humanitarian Emergency however many people who have never done so before will need to provide or use the services of another person to give or obtain information. Often those supplying the information are those who also have control over access to the rescue and relief operation. Sometimes they will be elected by others to serve in those positions, at other times they will be existing community or religious leaders or government appointed officials. However they are chosen they are almost never people with disabilities and people with disabilities almost never have a voice in choosing them. They are frequently distrusted by those seeking assistance and even more so by those with disabilities who are seeking assistance. (D Becirozic, personal communication, May 12, 1997; S Milinkovic, personal communication May 15, 1997; N Rajaratnam, personal communication, January 21, 2005; G Wickremesinghe, personal communications, January 19 -22, 2005)
It is also unlikely that, in the vast unmet need of a Complex Humanitarian Emergency,  those in authority will see any reason to treat any person with a disability, let alone a child, with special consideration. While working in Iraq Elimam (2001) found that, while there was stated sympathy for the difficulties of any person with a disability, this did not translate into the provision of  assistance, let alone extra assistance. Any child with a disability, who was not in the direct care of an adult, was regarded as an insoluble problem which was best ignored. Only people with disabilities who were also articulate enough to make themselves heard were likely to obtain any assistance and even they were unlikely to obtain any extra assistance. (A. Elimam, personal communication, June 4, 2001)
One of the greatest difficulties is that there will often been more than one language involved and use will be made of untrained interpreters who may or may not be able to do the task. Even when they can do the task they may have other reasons not to do it. Political issues do not cease to exist in a Complex Humanitarian Emergency, indeed they may be heightened by it. As a result information may be filtered or altered.  In one case Cuevas & Lopes (2005) found that two untrained interpreters were not asking questions they deemed to be unsuitable to ask people with disabilities and that they were providing a false medical diagnosis rather than ask the questions they were requested to ask. (J Cuevas and M Lopes, personal communication, February 1, 2005)  Children with disabilities are even more at risk of being refused adequate interpreting services and Makambe (1989), Mufwene (2000) and Santarém (2000) all found instances of radical medical treatment being administered to children with disabilities without prior consultation or the consent of the child or a parent. (C. Makambe, personal communication, November 2, 1989; A. Mufwene, personal communication, March 9, 2000; J Santarém, personal communication, March 11, 2000).
Communication for people with disabilities, especially children with disabilities, in a Complex Humanitarian Emergency then presents a very complex set of problems influenced by many other aspects of a situation which is already complex and often difficult to comprehend. Even while recognising the complexity of  the problems involved any adult or child with a disability should still be held to have the same communication rights as any other person in a Complex Humanitarian Emergency.
These rights include the following:
           (1)   The right to be informed at the same time as others in the group
           (2)   The right to the same information as others in the group
           (3)   The right to be heard when there is a need to inform others of an issue which affects their welfare
           (4)   The right to be consulted when there is a need for a decision to be made which affects their welfare
            (5)   The right, where necessary, to an appropriate level and type of communication assistance.
Reynolds (2002) suggests that “(i)n a serious crisis, all affected people take in information differently, process information differently and act on information differently”. Despite this, as indicated earlier,  information in a Complex Humanitarian Emergency may only be given in one form, usually verbal, and without requests for others to be aware of the need to pass accurate information on immediately. It is recognised that it may be very difficult, sometimes impossible, to provide information in multiple formats.
Where that is the case officials and aid agencies must take responsibility for asking others to take responsibility for providing whatever access to information that they can.
There can be no unnecessary delays to handing out information. In an emergency situation delays can be dangerous and cost lives. Hurd (2005) found five unaccompanied children, two with disabilities, had not received any food or water for three days because they had not been informed it was available but had to be collected from a reception point. By then the condition of the two children with disabilities was critical. (F. Hurd, personal communication, January 11, 2005) Rehman (2005) found that failure to inform a group of intellectually disabled adults about the unsafe state of a building which appeared superficially safe resulted in the deaths of three people when the building, in which they were sheltering, later collapsed. Other adults had been warned away from the building. (N. Rehman, personal communication,  October 31, 2005).
Delays can also cause people to lose any chance of access to essential goods and services. Lawrence (2005) found that after the South East Asian Tsunami, while seriously injured people were being transported out of some areas,  people with disabilities were being left behind and transport they may have used was being given to people without disabilities who had the capacity to walk to another location, (J. Lawrence, personal communication, March 19, 2005).
Children, and more especially unaccompanied children and children with disabilities, also have the right to information. They may already have seen and observed a great deal. Children with disabilities are no less likely to have observed that there has been an event leading to an emergency.  While so many children were lost in the tsunami it was found that a number of children with disabilities survived because they were in more distant locations which were not as badly damaged. Lawrence (2005) talked to 18 children in one location and found they were generally not informed about what had happened and, if they were, the information was either inadequate or grossly inaccurate. (J. Lawrence, personal communication, March 19, 2005; personal communication, March 23, 2005). Unaccompanied children and children with disabilities need accurate information even more than most children and just as much as any adult. Although some will be unable to make decisions because of their age or because of mental incompetence other children will need accurate facts with which to protect themselves, such as where to find sources of food and shelter. (C. Makambe, personal communication, November 2, 1999) They may also need to make decisions about their future, perhaps about whether to remain in or leave a location. (A. Mufwene, personal communication, March 9, 2000).
What can be done about all these problems?
There appears to be a need to develop a number of simple communication tools for chldren with disabilities and unaccompanied children which will assist them to provide essential information about themselves.  The Wong Pain Scale for Children is a simple array of 6 faces ranging from a smile for “no hurt” to tears for “hurts worst”. It is a simple and effective device used to help children describe their level of pain. (6) .
It has been suggested that a similar array could be developed to discover what type of family unit a child has been living in. (R Wilson-Taylor, personal communication, January 22, 1992)
There is also the need to explore more thoroughly the possible use of visual symbols.
Pictorial symbols providing choice may be useful. (A. Mufwene, personal communication, March 9, 2000) . While pictorial symbols have limitations they may lead to the use of a more extensive symbol system such as the Blissymbol system. (7)
Any system or tool which is to be used however will require the training of those delivering aid. Depending on the system or tool being used training could range from information sessions  to several days. It is suggested that aid organisations need to cooperate to develop their knowledge about low technology resources and the way in they can be used to assist in communicating with the victims of Complex Humanitarian Emergencies. While identifying photographs can be taken and medical information recorded in many, often very sophisticated ways, it is still essential to be able give and receive information of other kinds. Only when this type of communication aid has been thoroughly explored,  and then developed as far as possible, will the level of risk to those most at risk, especially children with disabilities, be reduced. The cost of developing and providing such low technology responses is low and the potential benefit very high indeed.
 (1)An excellent source of general information about communication in Complex Humanitarian Emergencies is to be found at http://www.comminet.com/
(2) http://www.yale.edu/opa/newsr/ 05-12-06. all,html Groce found that “while all children are at significant risk of being victims of violence, disabled children have significantly increased risk because of stigma, negative traditional beliefs and ignorance. Lack of social support, limited opportunities for education, employment or participation in the community further isolate disabled children and their families, leading to increased levels of stress and hardship. Disabled children are often targeted by abusers who find them easy victims.”
(3) See e.g. http://www.ecpat.net/eng/ecpat_news/protecting_children.htm where the problem is recognised with a single sentence in paragraph seven on “Registration, Tracking and Monitoring” which reads, “This information may be difficult to obtain, especially where a child is non verbal either because of age, disability or trauma.”
(4) Gunn, C (2005) The Communication Needs of People with Disabilities: Unpublished study for the Communication Project Group.
(5) It may also be worth noting here that asking the head of the family to acknowledge the receipt of goods by signing, or making their mark, on a pictorial receipt reduced the level of corruption and reassured those adults unable to read through lack of education or disability that they were receiving the supplies to which they were entitled. (H. Pedersen, personal communication, January 18, 2005; personal communication, June 30, 2005)
(6) Reynolds, B., Hunter Galdo, J., & Sokler, L (2002)  Crisis and Emergency Risk Communication. Atlanta : Center for Disease Control and Prevention cited in Crisis, Emergency and Risk Communication http://www.cdc.gov/communication/emergency/leaders.pdf p.4
(7) These may be seen at http://www3.us.elsevierhealth.com/WOW/graphics/wong_faces)-10.gif
(8) The link to the most extensive list of references to Blissymbolics on the internet is to be found at http://www.blissymbolics.us/resources/. Blissymbols have been successfully used as the common communication system at a permanent reception“camp” for children in Africa since 1984.
(9) Groups considered to be at particular risk are the very young, the frail elderly, women and girls. See e.g. Lindsey, C (2001) Women facing war: ICRC Study on the impact of Armed Conflict on Women, ICRC Geneva

  

2 comments:

virtualquilter said...

Interesting reading, to say the least. Some very clever signage on cards required.

virtualquilter said...

And something for the blind ....