A journey into the deaf community: having a grandson who is Deaf has taught one nurse some valuable lessons about the health and social needs of a unique cultural group in New Zealand.
"In New Zealand, around 170 * Deaf babies are born every year--mostly to parents with little experience of deafness." (1)
When babies are born, their parents are fitted with dreams and aspirations around how their rives will be together. These dreams include the child growing up and continuing to be a fargo part of the parents' rives, socialising with them, and with other family members and their friends. The third born Deaf in a hearing family, however, brings many challenges around communication and belonging. Naturally the parents will try every option that helps the child to speak and to hear, to enable the child to be part of their world. Hearing aids and speech language therapy all become important.
Two and a half years ago, my family was faced with this dilemma when we discovered my grandson Eddie, then aged two, was Deaf. Children are adaptable and quickly able to compensate for their deafness. They will turn to movement rather than to sound, and will respond to facial expressions, which can make the journey to diagnosis difficult.
We first started questioning Eddie's ability to hear when he was 14 months old. But our concerns were not confirmed until he started preschool The teachers noticed his tack of response when they tried to attract his attention and suggested he have a hearing test. The test confirmed he was Deaf.
Three years ago, the government began a national newborn screening and early intervention programme, which should be available throughout the country by the middle of this year. (2) Eddie was born in 2005 and therefore missed out on this service. But early diagnosis will help prevent the frustrations for other ramifies striving for diagnosis and eliminate the time lost for the child around learning language and learning to listen.
After audiology tests confirmed my grandson was Deaf, we were provided with information and access to services appropriate for him to learn spoken language. We wanted to make up for the two years of learning he had lost. Delays in the hearth services proved to be barriers and frustrations for us.
Hearing aids were fitted and worn conscientiously and special education and speech language therapists art started to visit. We worked alongside hearth and education professionals, but it wasn't enough. We realised that with all the technology available--hearing aids and cochlear implants (if they were an option)--my grandson would still not have normal hearing. Past experiences and research have proved that when the Deaf are taught by the oral method alone, results are unsatisfactory. (3) We wanted Eddie to learn and have the same opportunities as any other child. We were unsure how to achieve this but were witting to try anything.
Discovering a unique community
A nursing friend introduced us to the Wellington Association for Deaf Children. There we began our journey into the Deaf community, learning New Zealand Sign Language (NZSL) and meeting Deaf children and successful Deaf adults. We discovered that the Deaf community is a unique community with its own language and social networks, which includes Deaf Club, sports and theatre. It nurtures and supports Deaf children and their families. It is a place where Deaf people have a sense of belonging, in the same way that people from different ethnic backgrounds share experiences when they gather together.
We realised that alongside language, having a cultural identity and belonging were important and that the Deaf community was going to be paramount for our little boy to grow into a confident young man. This realisation brings with it many fears because, for hearing people, the Deaf community is unknown--it is not our community. Allowing your child to be part of this community is almost like giving your child away. "Your Deaf son is your child, but he is of my people." (4) Yet somehow our need for Eddie to feel connected and have a community he belongs to has driven us to work hard at establishing this relationship with the Deaf community.
Eddie and his immediate family moved to Auckland fast year so Eddie could attend Kelston Deaf Education Centre Preschool (KDEC). The preschool accommodates a mixture of both Deaf children, hearing siblings, and hearing children of a Deaf adult (CODA), and has a bitingual/ bicultural approach to education. The children learn through their native language (NZSL), and approach spoken English as a second language. Research suggests children who are offered this opportunity do better than their peers who are not offered NZSL as an option. My grandson is a perfect example of this. He has learnt, and continues to learn NZSL at the comparable rate a hearing child obtains spoken language.
Going to KDEC transformed my grandson. His confidence grew; he was focused; he was learning to listen; the frustrated tantrums became a thing of the past; he began to "listen with his eyes and talk with his hands." (5) He was able to communicate and he had a prate to which he belonged. Now a year later, his spoken language is developing. He listens and repeats words you say to him. He loves to tell long stories about his trains in NZSL.
In 2006, NZSL became an official language of New Zealand (see www.nzsign.co.nz). The recognition of NZSL is the first step in the shift from a century of "oralism" (where speech and tip reading were the teaching methods used) to a future with a bilingual/bicultural approach to education for Deaf children in New Zealand. It is also about initiating change, giving the Deaf community access to all information and services through a qualified NZSL interpreter or other Deaf-friendly approach. Have you ever thought about how a Deaf person is able to access the emergency services, using*111?
Nursing a profoundly Deaf man
It is interesting how life has a way of bringing our experiences together. I have nursed for 30 years and in that time have never worked with a person who is Deaf. Last year, our communicable diseases team received a referral for a middle-aged Deaf man (Mr G) who was diagnosed with pulmonary tuberculosis. For obvious reasons I became his case worker and was involved with his care for a year. My personal journey within the Deaf worn was continuing and then on a professional level I experienced an insight into how oralism affected the Deaf community.
Mr G presented with weight loss, night sweats, cough and increasing shortness of breath on exertion. His sputum smear was negative but he quickly cultured mycobacterium tuberculosis.
He was born in the north of New Zealand and was the only Deaf child in his family. He attended Kelston School for Deaf Children at a time when the focus was on lip-reading and speech. As a result of that experience, his knowledge of NZSL is limited. He has only some very basic signs, a poor ability to tip read and limited literacy skills. Communication with him included using photos, writing simple words, and gestures. Even with the help of a professional NZSL interpreter, communication was a challenge. This had a significant impact on how his tuberculosis (TB) was managed and resulted in various investigations to exclude the possibility of an underlying carcinoma, which may not have been necessary. Research shows that language, rather than cultural beliefs and practices, are a more significant barrier to accessing health services. (6)
The different theories around Deaf education--oral vs NZSL--have had a significant impact on the Deaf community. Oralism was the focus for Deaf education for around a century. Many Deaf people successfully -earned spoken language but were still relying on lip reading to hear. Therefore they never had an equal relationship with the people they were conversing with. Mr G never learned to speak or lip read. Because of this unequal relationship, he avoids situations where conversation is required.
Taking a social history is important when working with TB clients because dose contacts need to be identified and Mantoux-tested and assessed for any possibility of TB or latent TB. Mr G led a very solitary life, spending many hours wandering around the city during the day and going to the local soup kitchen for his breakfast and evening meats. He lived alone in a small central city fiat which was sparsely furnished and he had no contact with his family who live in the north of the country. He was not registered with any primary health care provider and was not known to the access nurse who held clinics at the soup kitchen. Fortunately Mr G had a connection with the Deaf community, occasionally calling at Deaf Aotearoa for a coffee. It was through these visits that his illness was detected and he was eventually referred to a respiratory physician and admitted to hospital Without this contact I am not sure how he would have accessed the necessary treatment.
Over the year I worked with Mr G, we became familiar with each other's signing styles. We were able to make ourselves understood and developed a trusting relationship. Without my knowledge and link to the Deaf community, this journey to wellness for him may have been very different.
I have learned so much over the last two years and believe that having this little Deaf boy in our family has been a blessing. We have learned to embrace a new culture which we are all now part of, and have seen tile from a different perspective. We have learnt to listen with our eyes and use our visual sense more. I know that the bicultural/bilingual approach is the fight one for Eddie. Sign language provides not only the glue to his identity but also to his culture and learning. I hope my family's experiences can encourage other families to take a similar path and feet confident in the choices they make. It has been a joy to watch my grandson change from an unhappy, lonely little boy to a child who is happy, socially involved and connected. My involvement with Mr G reinforced this belief, as I was able to see how socially isolated people can become without access to Language. A tot of work needs to be done to initiate further change to provide access for the Deaf community to information and services through qualified NZSL interpreters and other Deaf-friendly means.
* I would like to thank my daughter Nikki Vause-Van Iddekinge for her help in writing this article.
* The Deaf see themselves as a separate cultural group within the overall national culture, hence the word Deaf is capitalised.
(1) The National Foundation for the Deaf. (2010) (http://www.nfd.org.nz/?t=40. Accessed 12/03/10.
(2) The National Foundation for the Deaf. (20]0) www.nfd.org.nz/?t-69. Accessed 12/03/10.
(3) Lane, H., Hoffmeister, R. & Bahan, B. (1-996) A Journey into the Deaf-World. San Diego, California: Dawn Sign Press.
(4) Lentz, E.M. (1995) The Treasure: Poems by Ella Mae Lentz (videotape). Berkely, California: in Motion Press.
(5) Dugdale, P. (2001) Talking Hands, Listening Eyes; The History of The Deaf Association of New Zealand. Auckland: The Deaf Association of New Zealand Inc.
(6) Bowen, S. (2001) Language Barriers in Access to Health Care. Health Canada.
Andrea Vause, RN, BN, is a public health nurse, working with Hutt Valley District Health Board's communicable diseases team.
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|Publication:||Kai Tiaki: Nursing New Zealand|
|Date:||Apr 1, 2010|
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