Taking culture into account: a Maori perspective on visual impairment.
The study involved in-depth, face-to-face interviews conducted by two researchers, both of whom are Maori. One researcher is visually impaired. Ethical approval from the Massey University Human Ethics Committee was obtained. Approval and support were also given by executive committee members of Ngati Kapo, a national provider of Maori health and disability services run by and for Maori who are visually impaired (for more information, visit: <www.kapomaori.com>).
From a list of Ngati Kapo members, purposive sampling was used to identify prospective participants in a specific geographic area. All who were approached agreed to participate, resulting in a sample of 8 men and 2 women. Of the 10 participants, 2 young men were attending secondary school, 3 were aged 20-60, and 3 were aged 60 or older; 1 woman was in her 50s, and the other was aged 76. Five participants had studied or were still studying at the tertiary level. Two of these participants studied at waananga (Maori universities), and the other three attended mainstream universities.
The degree of visual impairment varied among the participants. All met the Royal New Zealand Foundation of the Blind (n.d.) criteria for registration: a visual acuity of 6/24 (20/80) in the better eye after correction or a field of view that does not exceed 20 degrees at its widest angle. One participant was totally blind, and one had low vision from birth.
Data collection and analysis
Although a formal questionnaire was used, the interviews were more in the nature of informal chats covering a wide range of topics introduced by the researchers and participants. The discussions focused on barriers that the participants faced, helpful services and strategies, and suggestions for improving education and services to Ma ori who are visually impaired. The interviews were approximately two hours long and were conducted in the homes of 9 participants and the workplace and home of the other participant. Five of the 10 interviews also included whanau (extended family members) who contributed information.
The interviews were audiotaped and transcribed, and a thematic approach was used to analyze the data. Barriers experienced and suggestions for overcoming them were sorted into three areas: general, educational, and cultural. A compact disc (CD) that provided a record of the results of the research was sent to each participant. The results were shared with participants to give them the opportunity to provide feedback on the findings.
Nine general barriers were identified. These barriers were psychological and practical adjustments to becoming blind; difficulty in maintaining relationships and forming new ones; negative attitudes, perceptions, and the lack of understanding of visual impairment by others; problems associated with restricted mobility, such as inaccessible and costly public transportation, unhelpful bus drivers, and footpaths in disrepair; bureaucratic-related difficulties in accessing resources and services; challenges in performing activities of daily living, such as shopping, cooking, and handling money; environmental barriers; reading difficulties mainly associated with small print, such as website addresses; and financial barriers, including expensive adaptive equipment, the cost of attending rehabilitation courses, and the extra costs that employers incur when hiring people who are visually impaired--costs that can discourage them from doing so.
Primary school. No barriers were mentioned in relation to primary school, perhaps because most participants became visually impaired later in life. The two participants who discussed their primary schooling in respect to being visually impaired were positive about their experiences. They mentioned receiving assistance from teachers and peers.
Secondary school. Both participants who were attending secondary school at the time of data collection had functional vision but had opposite experiences of how their visual impairment was accommodated. One reported that he had no problems and participated actively in all facets of school life. In contrast, the other participant could not read the chalkboard, and although he had assistance from a part-time teacher's aide, when the aide was not present, he struggled to cope. He reported feeling extremely frustrated with some teachers who ignored his needs. The woodworking teacher, for example, believed a teacher's aide was not needed because he could provide help. The participant noted, however, "He is often away with other students when I need help. I keep whacking my fingers with the hammer!" A major complaint was that the resources and help promised at meetings for the student's Individual Education Program were not forthcoming. Other difficulties he experienced were restricted course selection, difficulty making friends, and problems with "unhelpful" teacher's aides.
Tertiary education. The participants who had been involved in mainstream tertiary education mentioned difficulties that are common to all students and difficulties that are directly related to visual impairment. The latter included having to rely on audiotaped material to write assignments and join in discussions, the extra time needed to complete work, the cost of specialized equipment and note-takers, unreliable notetakers, and not being permitted to submit assignments on CDs or audiotapes.
The two participants who had attended wananga identified many barriers that are particular to studying in these Maori institutions. Some barriers were related to studying Maori subjects, while others were of a more general nature. The barriers they mentioned included the lack of Maori-related and Maori language resources in accessible formats, both at the wananga and at local libraries, and the lack of aMaori-speaking computer dictionary or spell check. Furthermore, the participants noted that there are additional costs related to studying Maori; for example, getting material transcribed by a proficient Maori speaker cost twice as much as English transcriptions; disability support services are limited at waananga, as is equipment and teachers' knowledge about visual impairment; and tutors rely on visual prompts to teach the Maori language.
The cultural barriers mentioned were environmental, organizational, personal, and related to Maori protocols and language. Marae (traditional meeting areas) are often large, spread-out, badly designed, and unsafe complexes, and some have areas that are off limits to guide dogs. A variety of protocols were reported as creating barriers for people who are visually impaired. For example, the requirement to take one's shoes off before entering the meeting house presented problems for the Maori with visual impairments, because they had difficulty locating their shoes when exiting the meeting house. One participant complained that despite being a fluent Maori speaker, he was rarely asked to speak on the marae. He believed that he was overlooked and underestimated because he was blind. A further language-related barrier was associated with learning whakapapa (genealogy). Whakapapa is most often represented and shared visually, making participation in this important cultural activity difficult for Maori who are visually impaired. Negative personal attitudes were linked to some cultural practices. For example, one participant reported patronizing and dismissive behaviors masquerading as manaakitanga (hospitality).
SUGGESTIONS FOR IMPROVEMENT
Raising people's awareness and understanding of visual impairment was a major theme that emerged across all areas. Many previously mentioned barriers were created because of such lack of awareness and understanding. To improve this situation, the participants suggested that decision makers in top organizational positions should "get out into the community to meet people who are visually impaired and see what it is really like for them--reading about it is not enough!" Similarly, there was a strong push for Maori with visual impairments to have greater visibility in the community. One participant mentioned a number of popularly held misconceptions about people who are visually impaired, including this one:
They are very even tempered; they don't get upset. Well, that's because they're not so visible out in the community. If you're visible in the community, then you can display whatever emotions that anybody else displays as part of the community, so when you're closed away, some of those [mis]perceptions develop and grow.
With greater awareness, understanding, and visibility, the participants hoped that attitudes toward people who are visually impaired would become more realistic, accepting, inclusive, responsive, and helpful. As one participant noted, "Changing the predominant 'charity' paradigm to one that acknowledges the strengths of and invests in visually impaired people would enable them to make a much greater contribution to society."
A variety of ways in which organizations could improve their services were also discussed. They included the provision of practical help and emotional support for the partners and whaanau of people who are visually impaired, increased consultation with Maori who are visually impaired to target services to their identified needs, more face-to-face contact, and disability-friendly venues and processes. Another suggestion was for the government to regulate prices to reduce the cost of disability equipment and resources.
Suggestions for improving educational provisions for students with visual impairments included introducing "key elements," such as braille, typing, computer access, orientation and mobility at an earlier age; advertising available services more extensively and making them more accessible to Maori; increasing content related to teaching Maori students who are visually impaired in preservice and inservice teacher education programs; teachers spending more time getting to know students and building relationships with them and their whUnau; and raising awareness and understanding among peers using a range of activities. Other suggestions included providing aides, resources, and study materials in accessible formats and adapting programs, routines, and requirements, including providing CDs of lessons; allowing audiotaped assignments; providing Maori spell check and extra computer assistance; increasing ancillary assistance when needed; and providing extra assistance for total immersion education (early childhood centers and schools where the language of tuition, curriculum, and context is Maori).
The participants believed that Maori children who are visually impaired should be given the opportunity to be fully involved in cultural activities, such as kapa haka (Maori performing arts) and learning the Maori language from kohanga reo (total-immersion early childhood centers) upward if they so chose. They should also be given opportunities to experience noho marae (sleepovers on the marae) and learn about tikanga and kawa (traditional practices and protocols). These opportunities should be provided from an early age and would necessitate various adaptations and accommodations. Noho maraer-elated suggestions included providing buddies to help orient children who are visually impaired around the marae and assisting them at mealtimes, allocating them the sleeping places nearest the door, and allowing them to bring their shoes inside the meeting house.
In discussing the layout of the marae, the participants suggested that upgrading should be done to provide interconnecting buildings, clearly marked footpaths, additional lighting, and raised seating and bedding. Such renovations would assist not only Maori who are visually impaired but also elderly people who stay on the marae.
DISCUSSION AND CONCLUSION
The data analysis revealed a wide variation in the quality of education and services received by Maori who are visually impaired. The majority of barriers that the participants experienced were related to the accommodation and acceptance of visual impairment in general, although some barriers were specific to Maori people. A major barrier experienced by most participants was the underestimation of their ability to perform tasks in both general and cultural situations. As one participant stated: "They are handicapping me; I am not the problem, they are." It is not surprising that although a number of specific suggestions were given to improve the lot of visually impaired Maori, the overriding emphasis was on raising people's awareness and understanding of visual impairment. These findings concur with the research on Maori and visual impairment conducted by Higgins, Phillips, Cowan, Wakefield, and Tikao (2010).
The discussion of cultural issues during the interviews conducted with the participants showed that they identified with their Maori heritage and felt strongly that culture needs to be taken into consideration in the education and services that are provided to people with visual impairments. Being visually impaired should not mean that they must also be culturally impaired. This is an important message for educators and other professionals who are encouraged to examine their services to see whether the content, resources, delivery, and assessment are culturally appropriate, readily accessible, affordable, and relevant to the clients who are involved. Similarly, community members, including people from the visually impaired person's own ethnic group, should ask themselves: "Are people being denied access to community and cultural activities and experiences because of their visual impairment, and, if so, what needs to be done to change this situation?"
It should also be mentioned that responsibility for overcoming the aforementioned cultural barriers lies with all New Zealanders, not just Maori. The waananga referred to by the participants are relatively new educational institutions with limited funding and experience needed to provide disability services. Similarly, the renovations required to improve the accessibility on the marae are well beyond the means of many, if not most, marae committees. The obligations of the Treaty of Waitangi (an agreement between the Crown and Maori signed in 1840) require the New Zealand government to work in partnership with Maori to ensure that their culture is actively protected. These obligations translate as assistance in removing the cultural barriers identified in this study.
Research has shown that incorporating cultural input in people's educational and care programs and including them as valued members of their ethnic group and community not only fosters their emotional and psychological well-being but also raises their self-esteem and facilitates their learning (Bevan-Brown, 2003). The participants in this research clearly articulated their entitlement to these benefits and provided suggestions as to how the benefits could be achieved. With the combined efforts of all those involved with Maori who are visually impaired, many of these suggestions can be made a reality.
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Higgins, N., Phillips, H., Cowan, C., Wakefield, B., & Tikao, K. (2010). Growing up kaapo Maori: WhUnau, identity, cultural well-being and health [E tipu kaapo Maa ori nei: Whanaungatanga, Maaramatanga, Maoritanga, Hauoratanga]. Dunedin, New Zealand: Donald Beasley Institute, & Hastings, New Zealand: Ngati Kapo o Aotearoa, Inc.
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Royal New Zealand Foundation of the Blind. (n.d.). Membership criteria. Retrieved from http://www.rnzfb.org.nz/members/become-a-member/membership-criteria
Jill Bevan-Brown, Ph.D., associate professor, Institute of Education, Massey University, Private Bag 11222, Palmerston North, New Zealand; e-mail: <J.M.Bevan-Brown@massey.ac. nz>. Taingunguru Walker, Ph.D., researcher, doctoral candidate, Stout Research Centre, Victoria University of Wellington; mailing address: Flat 9D, 131 Abel Smith Street, Wellington, 6011, New Zealand; e-mail: <email@example.com>.
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|Title Annotation:||Around the World|
|Author:||Bevan-Brown, Jill; Walker, Taingunguru|
|Publication:||Journal of Visual Impairment & Blindness|
|Date:||Sep 1, 2013|
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