Deafblind people, stigma and the use of communication and mobility assistive devices

Abstract

This paper draws on interviews with 27 deafblind people and the mother of an autistic deafblind woman carried out as part of a larger research project on travel issues for blind, partially sighted and deafblind people to investigate and report on issues related to the use of communication and mobility assistive devices, in particular long canes, guide dogs, hearing aids and wheelchairs. The interviewees came from six different countries and both similarities and differences were found between the experiences in the different countries. One of the main themes that arose in the context of the use of these devices was stigmatisation. This is already frequently a problem for deafblind people due to the additive or multiplicative effects of what could be seen as two distinct impairments. Consequently actual experiences or fears of being stigmatised as a result of using assistive devices led to some deafblind people who might benefit from these devices not using them. This generally makes them more dependent on other people for personal assistance and may reduce their quality of life, as such assistance is not always available. However, deafblind people are as diverse as any other population group and many of the interviewees used communication and mobility assistive devices and considered their benefits to outweigh any possible stigmatisation. Several of the interviewees used several assistive devices and had found some of them easier to accept than others. the EDU definition requires the person to have 'significant auditory and visual impairments' and the resulting barriers are 'obstacles in communication with the surroundings and prevents normal participation in society'.The interpersonal communication approaches used by deafblind people are discussed in more detail in [3] and include spoken, sign and tactile sign languages, deafblind manual alphabets and finger Braille (typing on six fingers like a Braille keyboard). Thus the development of assistive communication devices for deafblind people is complicated by their use of a number of different communication strategies, giving a need for different communication devices for different groups of deafblind people. A number of assistive communication devices have been developed to support deaf people who use spoken languages [4], including hearing aids, cochlear implants, induction loop and infrared assistive listening systems. Portable communication devices have been developed for deafblind people who use manual alphabets or finger Braille, for instance [5-

Life strategies of people with deafblindness due to Usher syndrome type 2a - a qualitative study

“…However, older participants who had frequently used the cane revealed only positive experiences. The ambivalence concerning the cane has previously been reported by Ellis and Hodges (2013) and Hersh (2013b), who found that people with deafblindness often perceive the white cane as stigmatizing. The discussion among the participants showed the importance of finding one's own way to approach controversial accessibility aids.…”

“…People who become deafblind have been described in terms of interactional powerlessness, vulnerability and struggling hard to adapt in a world that is sometimes perceived as hostile (Schneider, 2006). Stigmatization has been reported in relation to the use of mobility and communication aids (Hersh, 2013b). The situation of persons with deafblindness has also been referred to as a constant ontological insecurity (Danermark & Möller, 2008).…”

Psychosocial well-being and health-related quality of life in a UK population with Usher syndrome

“…Existing evidence also tells us that deafblindness is linked to poorer psychosocial well-being. Deafblindness is linked to a high prevalence of social isolation and loneliness,15 increased psychological distress,16 depression,15 17 vulnerability,18 perceived stigma19 and perceived inadequate support 1516 Therefore, psychosocial well-being may represent an important factor to consider in the HRQOL of people deafblindness.…”

Older Adults� Perspective

“…Assistive devices, which are interchangeable with "assistive technology" and "adaptive equipment," are defined as any item purchased commercially or customized that improves functional abilities of the disabled individuals (Foti & Koketsu, 2013). Low vision assistive devices (LVADs) are used to enhance engagement in daily occupations and examples of LVADs include: electronic vision-enhancement system, prisms, lighting, filters, adaptive computer technology, audio players, recorders, notetakers, communication devices, optical devices, non optical aids, and mobility devices (Copolillo & Teitelman, 2005;Fok, Polgar, Shaw, & Jutai, 2011;Hersh, 2013). Optical devices, such as telescopic lenses and hand-held magnifiers, are particularly helpful for reading (Fok et al, 2011).…”

“…Many assistive devices such as long canes or guide dogs may help promote independence in older adults with low vision. Despite the accessibility of long canes, which is a more traditional assistive device, long canes can be abandoned over time due to lack of proper training or inconvenience (Hersh, 2013;Whitmarsh, 2005). To maintain independence in community mobility, an alternative solution is to obtain a guide dog from organizations such as Guide Dogs for the Blind (GDB).…”