Role Changes after acquired disability

When a person has lived a life prior to acquiring disability, the path toward a fully inclusive new life can be challenging for themselves and for their loved ones. One step in this path is the discussion about how life has changed, particularly for the person now living with disability, and what roles they now have. Discussing this process within a close and supportive peer network can be rewarding for those early in their journey as well as those further along the path as their insight and input can be hugely beneficial.

One moment life is rolling along as you had hoped, the next moment changed forever due to an injury which has led to a lifelong disability such as ABI (acquired brain injury) or spinal cord injury. What now? Acquiring disability results in many people struggling to cope with the magnitude of life changes. Below are a series of discussion points that can lead to greater adjustment to such changes via recognition of new life roles and future valued role ideas:

What is acquired disability?

There are many different kinds of disability and they can result from accidents, illness or genetic disorders. A disability may affect mobility, ability to learn things, or ability to communicate easily, and some people may have more than one. A disability may be visible or hidden, may be permanent or temporary and may have minimal or substantial impact on a person’s abilities. Examples of acquired disability issues include:

  • Accident related injuries: head trauma, spinal injuries, loss of vision, loss of hearing, injured / loss of limbs.
  • Illness and health related: post stroke, post-traumatic stress, Multiple Sclerosis, Arthritis, Motor Neurone Disease and a range of mental illnesses.

What are some examples of acquired disability you can think of?

Why me?

There are many different reactions to acquiring disability. In many cases the person has experienced a very significant injury or illness and there is a period of initial joy that they were able to survive. After this initial period of elation, then a period of great reflection and often sadness can occur. For both the person who has acquired the disability as well as their family and friends, thoughts move toward the many changes to their life being experienced. Such changes result in loss, each of which needs to be identified and processed. Life changes from acquired disability can lead to feelings of helplessness, loss of hope and frustration at the reduced life options available. Questions about work, money, friends, abilities and challenges often seem insurmountable for at least a period of time. However, if successfully explored, with support, many people become able to view this period of great change as an opportunity to reflect upon what is most meaningful in life. While some options may not be possible, many are. So it is important to discuss with your peers how to rebuild your life after acquired disability.

What is one thing that has changed since you acquired your disability?
Thinking of this change, what are some ways you have in order to manage this change?

The experience of acquired disability

Research illustrates that ‘Disability, whether congenital or acquired, significantly alters the life experience of the individuals who are directly affected and those closest to them’ (Oullette & Gough, 2002, p. 174). Many factors influence impact of onset of disability (ABI):

  • When and how it happens
  • Is the disability illness-, age-, accident- or violence-related?
  • Potential for significant blame/guilt in some instances
  • Type, severity, visibility and stability of disability
  • Response of family and friends
  • Age and gender
  • Inner resources, temperament, self-image, self-esteem
  • Presence or absence of family support
  • Religious/spiritual beliefs
  • Income
  • Available technology (medical and other)
  • Government funding trends (impact on availability of support)

Have you acquired your disability? If so, what were the circumstances?
How have you managed the process of adjustment since you acquired your disability?

What about work?

After acquiring disability, many people have been through a long and challenging process of rehabilitation. Many have therefore not been able to retain their prior work or study commitments, and some may be informed that their prior work is no longer possible for them.

If you are able to choose to work now, what sort of work are you interested in?
What do you say when people ask ‘What do you do?’

Other Roles

While advice may be to hold off on returning to work until further along your path after acquiring disability, there are many other ways in which you can have valued roles and be a full participant in your community.

Have you considered volunteering?

Are you interested in increasing your family/home role?

Do you have hobbies or leisure options to pursue?

What about working part-time?

Have you considered starting or returning to study?

Useful links and resources:

  • Synapse, the Queensland brain injury network, offers excellent online resources on managing the impact of acquired brain injury. Specifically they provide resources on: sexual changes after a brain injury, changes in mood, changes in relationships as well as changes in accommodation. These are available from: https://synapse.org.au.

Co-authored by Families4Families

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The information on this page is also available as a downloadable Quick Guide, by clicking below. There are.pdf and word versions.