People with Disability - Defining Transitions

In the disability literature, transition frequently refers to the transition from school into adulthood and all the attendant decisions this requires – further education, work, independent living. In the psychological and counselling literature, transition is defined more broadly to encompass a ‘short-term life change characterized by a sharp discontinuity to the past’ (Brammer, L). Examples include job changes, disabling accidents, marriage, birth, divorce, death, serious illness, victimization, death, moving home and travel. These transitions can be positive such as an extended holiday or negative such as a traumatic event such as death of a loved one. These experiences are usually felt as a loss and can thrust the person into mourning. A transition may be voluntary or involuntary; timely (such as voluntarily moving out of the parental home) or experienced as ‘out of time’ such as an early death.

Changes can be viewed in a number of ways:

1. Change as a journey (Bridges). This image encourages people to see their transitions as meaningful events in their lives and an opportunity for learning and growth.
2. Change as a social interaction (Schlossberg). In this model, change is seen as an interaction between the event and the person and is characterized in terms of its type, context and impact. The transition is then examined with respect to:
   • The way the person experiences the event
   • The nature of the transition itself
   • The coping resources present at the time of the transition
   • The personal characteristics of the individual and their environment such as social supports.

   These variables are studied to assess the balance of the current and possible strengths of and challenges to the individual. They are linked to the characteristics of the individual (self-identity, age, maturity, level of intellectual capacity). Work with the individual would require an assessment of the variables and person’s strengths and limitations and determine what resources are required to enable to person to cope satisfactorily

3. Change as a series of predictable, overlapping stages. In this model, transition is viewed as a process of fairly predictable stages that overlap and may recycle earlier stages. (Brammer, 1991); like a story-book pages are turned (Life story books, Books Beyond Words). They are adaptations of the work of Elizabeth Kübler Ross in relation to death and have been applied to loss and grief in general. These stages include:
   • Confusion and emotional discomfort as well as shock if the loss is unexpected and severe.
   • Sadness and despair which may alternate with relief and positive feelings.
   • Mood stabilization, unless the loss is severe and defences – such as rationalization, denial and fantasy for example – are used. The person’s usual coping skills and network may be tapped. The length of this feeling of depression may vary depending on the person’s perception of the severity of the loss, coping resources, and cultural attitudes. A period of healing is encouraged. One goal is to let go of the past person, thing, job etc. and take hold of a new object or relationship. Over time these resources enable the person to regain self-confidence and self-esteem until they can look to the future with optimism and hope.

How do the people we support view their life transitions?

Research findings

My name is Anne and I have been supported by The Housing Connection for nineteen years. I am one of two client reps – elected at the Annual General Meeting – on the Board of The Housing Connection. Each month I phone a number of clients and ask them how they are going and then report to the Board meeting. I also make sure the Board knows about all the social and community activities (which I attend) that we are involved in. So, people supported by THC know me pretty well and it was easy for me to call them for this research as they are used to me chatting to them and asking questions.

Before the interviews started, we sent them a form asking permission for them to be interviewed for this paper. Then we worked out what we wanted to know and what questions to ask. I interviewed 14 people and this is what I found:

Age:

The people I interviewed were aged from 19 – 63 years old. Six are in their forties and five are over fifty.

Gender:

I interviewed four men and ten women.

Length of time at The Housing Connection:

Those I interviewed have been with The Housing Connection from 1 year to 20 years with nine for ten years or more.

Schooling

Of course, they all went to school. Most of them went to a number of schools and changed from mainstream schooling to special classes in mainstream schools to special schools. They found these changes difficult and most of the people did not like school because they were teased. Even though most of them went to school a long time ago, they remembered it because they were so unhappy there and could not wait to get out. The people I interviewed left school between the ages of 14 and 17.

Facing changes

Like other people in the community, those I interviewed have gone through many changes. The have:

• Spent time in respite
• Moved out of the family home
• Moved house
• Made friends
• Been sick or had family members who have been sick.
• Some of them have had to deal with serious illness and death – including the death of mothers, fathers, a husband, sister and other relatives. Two lost family members in a car crash.
• Two of the people in the group have retired.

How did they cope with these changes?

Coping with change

The most important thing that helped people cope with change was good support – both from families (especially their mothers) and especially the support from The Housing Connection. Also, it made a big difference if they had a say in what was happening in their lives.

Other things that helped are:

• Being independent and having things to do in the community.
• Having friends. There were a group of us who used to go to the same respite support when we still lived at home and we made friends there. It helps that we are supported by the same service as for some of us this means that not everyone was a stranger. It also means that we have a community into which new clients can be welcomed.
• Family support

Things that would have helped even more are:

• More support at the right time
• A flat mate
• Getting work

What made it harder was:

• When staff come and go, that is difficult – especially agency staff who they do not know
• Not having enough money to go out
• Not having a say in what they do in their lives and in any changes
• Not enough support – one client lived in the country with almost no support until he moved to Sydney
• Not being able to find a job
• Illness or accidents which meant they could not get out and about.
• Coping on their own when family died
• Being bullied and teased.

The most important thing that people feel makes a difference is support when it is needed and good contacts with family and friends and in the community. Dick said: It helps when people just take time to listen to him!

I think it is really important that you ask people with disabilities what we need and that you listen to us. Also other people with a disability should have a chance to speak at conferences like this. Thank you for the opportunity.

Table of Contents

Related posts:

1. People with Disability Share Their Experience of Life Transitions
2. People with Disability as Researchers