by Di Hartmann
Reprinted from Blind Citizens News, June 2002
Reading a recent issue of Blind Citizens News, I noticed that at the 2001 Convention a resolution was passed by BCA members, supporting the Australian Deafblind Council (ADBC) in its fight to have ‘Deafblindness’ recognised as a single condition by Federal and State Governments and Agencies.
It occurred to me that whilst there was merit in one disability supporting another, many of the members of BCA would know little, if anything, about deafblindness, or had in fact, never met a person who was deafblind.
Just as the blind community has a division of those who are totally blind, and those who are vision impaired, the deafblind community also has two divisions. People who are profoundly deaf, who use Auslan for communication, and are legally blind consider themselves as ‘deafblind’ (DB). Auslan is the official language of the signing deaf in Australia. Those people who wear hearing aids or are hard of hearing and legally blind, usually describe themselves as ‘vision hearing impaired’ (VHI).
I am aware that there are people in the blind community who have a hearing loss, whether it be from an ageing process, genetic condition or from an accident, who may not relate to the term ‘deafblind’. As blindness is often their primary sensory loss, these people tend to relate mostly to blindness issues and culture. It is when both conditions are almost equally debilitating that there is a need to understand why deafblindness should be seen as a separate disability for other people to fully understand the specific needs of this very isolated group of people.
I have been involved with the deafblind community for the past twelve years due to my own dual sensory loss. I have a limited knowledge of Auslan but have found that over a period of time, members of the deafblind community have placed their trust in me, especially when I have advocated on their and my behalf for services and attitudes to be changed to accommodate our needs. Deafblind people are, for the most part, socially isolated due to the inability of hearing people to communicate with them.
Many of the issues concerning deafblind people are like those experienced by blind and vision impaired people – for example, transport, education, accommodation, mobility, advocacy, employment and support. Imagine if one has a dual sensory loss, how much more complicated life can be. I have chosen to write about some of the more pressing issues for deafblind people.
Transport
Deafblind and VHI people are encouraged to travel independently and many do, although most need to have a guide. Travelling independently, as we all know, can be extremely frustrating when destination boards are impossible to read. It is even more difficult and frustrating, when one is unable to hear announcements or communicate with ease with the public, something that blind and vision impaired persons take for granted.
Education
It has been my experience that many deafblind people have been poorly educated. This, in conjunction with the fact that their language, Auslan, is a visual language without written form, means that many have difficulties with English literacy and have a limited vocabulary in English. This is not to say that the deafblind person is not intelligent, as I quickly realised when communicating with them in their first language, Auslan. Auslan does not rely on spelling of English words. It uses signs to convey concepts and phrases. Most deafblind people do not have Braille skills, although in recent years some people have been taught this method of communication. Without braille, there is no other format available to them. If a deafblind person seeks to further their education, firstly they must check to see if they can have the services of an interpreter before starting their course. Many an opportunity for further education is lost to the deafblind person because provision of an interpreter is denied due to lack of funding or lack of availability of an interpreter skilled and willing to work with a deafblind person.
Only in recent years have the various agencies for sensory loss begun to understand the special need of those people who have a dual sensory loss.
Only recently, with the advent of modern technology and individual classes teaching the internet and email, have deafblind people been able to break through the communication barrier between them and hearing people.
Mobility
Without mobility training, no blind or vision impaired person can feel safe when walking the streets or using public transport. I personally know of a deafblind person who went to a blindness agency about ten years ago and was given a cane but no mobility instruction because no instructor could communicate with this person. Fortunately, this has now changed, and most deafblind people have undergone mobility training, which has been the single most important factor so far for their ongoing fight for independence. There are now a few mobility instructors (in Melbourne) who have Auslan skills.
There has been a reluctance to train deafblind people with guide dogs although this has been done overseas. It has been stated that deaf people don’t talk, but I have yet to meet a deaf or deafblind person that cannot make words that can be heard. It is hoped in the near future that this situation will be changed, and deafblind people will have the benefit of more freedom of mobility with a trusted guide dog as their companion.
Support
Whenever deafblind people are asked what they most want, the answer is almost always ‘to have on call someone who will be a guide/interpreter for any activity I wish to pursue’.
In an ideal world, not only would there be people trained in Auslan, as well as guiding skills, but also possessing the ability to describe the surrounding environment. The deafblind person would be able to ring a central register and ask for ‘a facilitator’, at any time of the day, for whatever reason they require, be it for social, recreation or business reasons. A few countries are known to have this service. The DeafBlind Association (Melbourne) provides a community support service, though this is limited due to lack of funding and shortage of people trained in the skills previously mentioned. Most other states have little or no similar service provision for deafblind people. It is the dream of most deafblind people to have a facilitator of their own, a person they can trust and enjoy the type of activities they enjoy.
Employment
Very little can be said of the possibility for deafblind people to obtain full or part time employment. Most positions require a level of literacy skills which are not always evident with deafblind people. If most prospective employers baulk at employing a blind or vision impaired person, then the idea of employing a deafblind person is even further down the scale. Most deafblind people would cherish the opportunity to obtain employment and therefore have the purchasing power to buy products that could enhance their lifestyle.
Advocacy
The ADBC is a reasonably new organisation and is just starting to speak on behalf of deafblind people. Unlike BCA, it has some agency staff on its committee, and this is because most deafblind people have poor literacy skills and limited knowledge of how to lobby service providers and government bodies. It is my hope that in time, the ADBC will be recognised as a peak body, speaking as deafblind people on issues important to deafblind people.