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Living with Deafblindness

Orientation and Mobility

Orientation and mobility refers to our ability to find our way or navigate our environment and the ability to move about safely. We all subconsciously use our senses, including vision, hearing, smell and kinaesthetic reactions to help us find our way. This can be in a familiar environment such as our home, or in a new and unfamiliar environment.

Using our senses

We use our vision more than any of our other senses to get ourselves from one place to another. For example, when finding toilets in public places, we use our vision to follow signs. For most of us, when we wake in the night in our own home, we are likely to find our way to the kitchen for a drink of water using tactile cues. We can do so without needing to switch on the lights due to the familiar environment. We use our hearing to follow sounds. For instance, when a child in the home cries out for help, we can use our directional hearing to find them and assist. Our sense of smell alerts us and gives environmental cues such as the baker’s or a florist shop.
 
People with low vision may use their residual vision to interpret their environment. They may use a combination of visual, auditory, tactile and olfactory cues to gain necessary information when navigating an environment. This depends on the type of vision loss, the conditions of the environment itself and their perception. A person who is blind has less of this information and even further when a person also has a hearing loss or is Deaf. For this reason it is important to keep a consistent layout in home and work environments. Familiarity with their environment is key for a person to maintain independence and find their way around safely.

Keep a consistent layout

A person with little or no vision can negotiate their environment if they are familiar with it. This includes the layout of the room or building and placement of fittings and furniture within. In an unfamiliar environment a person may need sighted guide support. (see also Adapting the Environment).
 
It is important to keep furniture in the same place.  Moving a low coffee table for example can be hazardous. A person who has created a mental image of where everything is, can likely move about with little to no difficulty. They are able to build a route in their mind to get from A to B based on their knowledge of where furniture and other items are. Once moved from its usual position, the item’s position in the person’s usual route becomes an obstacle and potential hazard. This makes it more likely for the person to bump into the item or fall over.
 
The external environment has significantly less control. There are many barriers present, such as street furniture, signage, crowded shopping centres, crossing roads, etc. Department stores often change their layout, car parks on pavements, bicycles chained to lamp-posts, all contributing to a changing outdoor environment.

Orientation and Mobility Training

People who acquire deafblindness or dual sensory loss may become anxious in moving around. Anxiety can be particularly high in environments outside the familiarity of the home.
 
Orientation and Mobility (O&M) Instructors can train people to building confidence using remaining senses. Additionally, people learn strategies and techniques to move around safely with or without a mobility aid. Training is tailored to an individual and considers their level of vision and strategies already developed.
 
An O&M programme can be structured from a starting point of sighted guide and indoor training. This includes an understanding of spatial awareness and developing a directional sense. This gradually moves to upper and lower body techniques, and trailing support. After the person has built their confidence, they can then start developing skills in orientating and using a mobility aid, transferring skills to the outdoor environment. For other people it may not be necessary to start at this point. A guide dog is also an option for many people with a vision impairment or dual sensory loss.

People using mobility aids such as an ID cane or long cane can gain the most benefit when given learning techniques. These include learning how to grip, scan, pick-up surface changes or drops-offs such as kerbs, and negotiate safely. An O&M Instructor may also assist a person to learn regularly-used routes. This needs to be reviewed periodically, particularly if there is a change in personal circumstances. For example, this could be changing jobs, or transport companies changing bus routes. Others may benefit more from having a guide dog.

Sighted Guide

Sighted guide is another mobility option. This can reduce the stress of needing to be aware of one’s space, concentrating on a route, using visual cues that may be limited to the shape of a building without the detail, listening to traffic patterns and problem solving. Independent travel is tiring.
 
Sighted guide support in an unfamiliar area may be a necessity for some people.

There are basic principles to apply when a person with vision impairment is being guided. They can lightly grip the guide’s arm just above the elbow, and position themselves just behind the guide. This allows for the person to rely on the guide to support safe movements. The guide can provide information as necessary about the environment, direction, changes in light conditions, surface changes, hazards, etc.

When guiding a person with low vision and moving from bright light to darker conditions and vice versa it may be necessary to pause and allow the person’s eyes to adjust to these changes.

People will have preferences about the way they wish to be guided. Develop a partnership and work together.

Communication

It is important to keep the person informed while guiding. Communication methods for people who are Deaf or have hearing loss will vary significantly. This is due to some being verbal, visual, tactile or a combination. In these situations it is important to pause in a place that is safe and communicate information in the person’s preferred format before continuing on the journey.

  • Pause or stop in a place that is safe
  • Communicate what is happening (change in direction, traffic, hazard, etc.)
  • Allow time for person to process information and decide what they want to do
  • Proceed if safe

For people who are hard of hearing it may be necessary to move to a quieter area (where possible) to enable them to hear information being communicated.

Communication Guide

A number of countries have schemes, whether voluntary or funded, to provide human support to people who are deafblind. Human support can be facilitating communication, safe guiding, etc. These schemes may help to reduce isolation by enabling access to the community and services.
 
In Western Australia, Senses Foundation carried out a pilot project offering this support to individuals who are deafblind. They are continuing to identify funding streams to continue this vital support.

Terms used in other countries for this type of support include Communicator Guides (UK), Support Service Providers (USA), Intervenors (Canada) and Contact Person (Denmark). There are many debates about these job titles – they are just job titles. The work that is carried out by the people who provide this type of support is the most important issue.

Making Choices

Remember that the person who has dual sensory loss or who is Deafblind may use strategies that make you feel uncomfortable and concerned for their safety when moving around.  Informed choice is important, if the person is aware of risks and has the cognitive ability they have a right to make choices.  What you deem to be unsafe may be something they have done for a long time and they have a strategy for dealing with the situation.

They may have received training by an O&M Instructor or a Guide Dog Instructor who has worked with them on a route that works for them. Explain your concerns to the person and ask if they need a review from an O&M Instructor.

Be positive and supportive.