Book Review:  Helping Children Who Are Deaf

By M. Miles  (m99miles@hotmail.com)

Sandy Niemann, Devorah Greenstein & Darlena David (2004)  Helping Children Who Are Deaf. Family and community support for children who do not hear well.  Berkeley, CA: Hesperian Foundation.  isbn 0942364449.    x + 246 pp.

Helping Children Who Are Deaf (hereafter: HCWAD) is the second in the Hesperian Foundation’s "Early Assistance Series for Children with Disabilities". It follows the format of the earlier Helping Children Who Are Blind, with some of the same chapter headings, and drawings of child activities and groups of adults in discussion, only with different speech bubbles, and  ‘deaf’ instead of ‘blind’. The books are written "primarily for parents and other caregivers of young children", with either condition. It is claimed that they are "written in simple language"; that the "simple activities" in these books "can help parents, caregivers, health workers, rehabilitation workers, and others"; and that the material "has been developed with the participation of communities all over the world so that it will be useful and applicable across many cultures."  On the other hand, it is admitted that "How to help children who are deaf communicate is a very controversial topic", and that some of the people who gave guidance on the contents might not be agree with  everything the authors decided to include.

The intentions are commendable but far from easy to fulfil. A good effort has been made, both in texts and illustrations; but closer attention could still bring improvements. The geographical target appears primarily to be developing countries, in line with earlier Hesperian publications, such as David Werner’s Disabled Village Children. Werner’s books are strongly rooted in his village times and places and activities, with descriptions of messy mistakes and what was learnt from them. In HCWAD, however, it is not clear whether the authors have personal experience of bringing up deaf or hearing impaired children, or have skills to assess their level of impairment and disability, or have taught any such children to communicate with gesture, sign, speech or gadget; or have coped with the challenges of raising a deaf or hearing impaired child in situations of structural poverty, ill-health and minimal family possessions as depicted in many of the illustrations;  or have ever engaged in training other people in these particular skills. HCWAD makes plentiful use of others’ experience, e.g. the long, rather glossy account of Nicaraguan deaf children’s sign language (pp. 3-11); yet this tends to omit painful but important parts of the personal learning process.

Much research was published in the 1990s on young deaf children, learning and communicating, in modern or transitional nations; but the ‘evidence base’ underpinning 200 pages of assertions in HCWAD about how deaf (or earlier, blind) children learn, and how to teach them, is far from clear. The implied background seems to be that broadly agreed global principles and methods exist for raising children with disabilities (the present case being impaired hearing) and these can be boiled down to a series of activities, which parents (and all the other people involved) should understand and practice, with some local adjustment since "every child who is deaf or cannot hear well is unique and will be helped most by approaches and activities that are lovingly adapted to her specific abilities and needs."

Simple, globally effective methods to be used at home by parents and other family members (especially Where There Is No Bank Balance) have long been sought in this field, more so since 1980 when the trend for Community Based Rehabilitation (CBR) was rising. HCWAD would have been welcome at that time, when there was no practical and credible booklet or manual on raising a deaf child in a poor, rural family, or a multilingual urban slum. Yet after 25 years, CBR has lost much of its shine, and the difficulties in effective transfer of knowledge and skills across cultural and conceptual gulfs have begun to be more widely recognised. The vast global range and variety (and mutual conflict) of child-rearing practices is now better known, though seldom taken into account in globalising ‘how to do it’ manuals. There are still some modernising professionals and volunteers keen to ‘get out there’ and just show all those ‘poor ignorant women’ how to raise their children properly; but to the post-modern world, such exercises in cultural colonialism and middle-class bullying are ludicrous. The strongly conflictual views in the modern world, about goals and strategies for raising deaf children with speech and/or signed communication, hearing aids or cochlear implants [etc], have somewhat hindered volunteers from rushing out to tell families ‘what to do’; and these problems are reflected on many pages of HCWAD. It is not an area that can be boiled down to ten easy universal rules. (But hey, are we admitting that the modern world can’t do much to help these poor children?)

HCWAD is superficially attractive, with its multiplicity of simple drawings of honest, poor folk in warm, adult-child interaction, in different cultural and sartorial styles, to "remind you that people all over the world face the same challenges you do". The world’s wealthier, English-reading classes have to love those romantic portrayals. Many of the activities depicted are quite plausible in facilitation of elementary child communication. Presumably that is why drafts of HCWAD won encouraging responses and endorsements from several dozen people inspecting and field-testing them. Less credible is the extent to which the barefoot adults squatting on the floor are shown addressing one another in layered, two- or three- stage, individualised paragraphs of time, space, thought, proposal and action. "My neighbor’s eldest daughter is helping our son learn to speak every afternoon. Maybe she could teach Mira at the same time." (p.24) These are organised people who seize the initiative and give their instructions to those who need them, like the mother who brings her deaf girl to school and reassures the doubtful teacher that it will all be fine: "Angela is a smart girl. I know she’ll do well here. And I can teach you some signs until you find a deaf person to teach you and the class how to sign." (p. 164)  Hmm... is this the same mother, worldwide, who bemoans the fact that professionals never listen to you, they just give you a long list of things you must do?

Okay, it’s a convention: each speech bubble packs the essence of three minutes’ conversation. Many of the drawings do work well, with an inclusive range of cultural and gender sub-texts. But some of them show people in non-western dress, whose bubbles busily advocate a western agenda, e.g. where the individual and her rights take precedence over the mutual duties of family and group. One drawing (p.162) sharply contradicts a basic rule of teaching deaf children (given on p.28), i.e. having face easily visible when speaking to the child. (The deaf teacher on p. 162 stands behind and above a small deaf child, supposedly telling her to "Say Baa", while resting her hand on the girl’s shoulders to feel the vibration). Another picture (p.145) has a curious message: a wall notice says "Drive Slow: Deaf Child", with caption, "A safety sign like this can make a street safer for everyone" (The notice pins the ‘problem’ onto the deaf child, rather than saying, e.g., Drive Slow: Children Playing). To get a small deaf girl to use a specific sign, choosing whether she wants her doll or her blanket, by tacking a silly little shelf on the wall to hold these items out of her reach (p. 90), displays a curious artificiality, in minimally furnished rooms.

The authors might also have considered including some Child-to-Child experiences -- as in Disabled Village Children (pp. 447-54) – where children both learn for themselves about disability, and contribute usefully to early detection, remediation and inclusion;  e.g., the playful ways school children can test younger children for hearing loss, and then imaginatively explore opportunities for friendly assistance and including deaf children in ordinary life. Another curious lacuna is the absence of an index, which would greatly increase the chances of people reading (most of) this book once, then using it as a reference manual for years afterward, which presumably was a Hesperian Foundation goal.

At the start of Chapter 15, "Why children lose their hearing and what we can do", some ‘Wrong Beliefs’ are firmly dismissed, e.g. that the child has impaired hearing because the parents did something wrong. (Does this let out the parent who whacked his little boy across the ear one day for pinching baby sister?) Yet the idea is endorsed (p.206) that children may be deaf because the health worker did something wrong (injecting certain powerful antibiotics to children, or pregnant mothers; a worldwide medical disaster). Among these simple messages for parents, there are differentiated instructions for treating syphilis and neurosyphilis: "For children younger than 2 years: inject benzylpenicillin slowly into the muscle or into the vein. Give 25,000 units (15 mg) for every kilo of body weight 2 times a day for 10 days...]" (p. 211). On the facing page it is recommended that people who may have syphilis should promptly see a health worker. If that isn’t possible, give the treatment anyway. (Preferably in a country where it is legal for people without training to give a course of antibiotic injections to a baby? Of course, in every small town a dozen unlicensed pharmacists are giving hundreds of injections every day; but at least HCWAD states the dose of penicillin per kilo of baby... just Don’t Get It Wrong).

One slightly ‘Californian’ agenda vigorously promoted is the prevention of sexual abuse (Chapter 13, pp. 167-78; similar but longer than the equivalent in the ‘blind child’ book). There is certainly a need for careful attention to this distressing issue, particularly where children have major problems in learning and communication, so that serious abuse may go unreported and unrecognised. It is also a topic peculiarly liable to cultural variations of perception (which is why some ‘normal’ child-raising practices in western societies are regarded as harmful and incomprehensible by non-western observers). From western experiences, the text generalises far beyond the available research data for most developing countries, though much of it sounds reasonable enough, in current English. (One should not underestimate the likely diffraction when this text is put into languages with very different concepts and vocabularies, by translators having their own cultural views on sexual practices and what young children should learn about them).

Then,  "Ideas like ‘private’, ‘secret’, ‘trust’, ‘safe’, and signs for them, are hard to explain to young children, especially if they are deaf. Remember that you will have to explain these ideas over and over." [Illustration: Woman showing young girl a large picture of a man with small girl sitting on his lap, his left hand on her crotch. Woman: "This man is touching the little girl in a bad way. If this ever happens to you, you come tell mama!" Child: "Tell mama."]  "Use different signs, gestures, pictures and words until you feel sure your child understands. Act out situations with your child, or use dolls or pictures to try as many ways of showing these ideas as you can." There may be more than one way of interpreting these instructions, as they occur on page 171; yet a registered children’s work professional who advised mothers to go over and over scenes of sexual abuse with their young children, repeatedly using dolls, role plays, pictures, puppet shows and anything else they can think of, could herself be investigated on several grounds of unprofessional conduct in some western countries. The undoubted need for better protection of children from sexual abuse, and the technique of ‘over-teaching’ some things to deaf children to be sure they have got the message, should not obscure the fact that this is a very tricky, culturally-constructed area in which to issue globally-appropriate advice; and that drilling fears and threats into young children’s minds also has its dangers.

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