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LIVING WITH RETINAL DYSTROPHIES

 

   

YOUNG PEOPLE'S ISSUES

This is an extract from the Retina Australia's 1999 National Congress in Sydney on "Young People's Issues". The participants included a minority of young people in their late teens and twenties, parents of young people, and others who could remember being young not so long ago. The workshop was a very interesting and rewarding one. This was due to the skills of the facilitator Cathy Bettman and the readiness of people to participate but most of all, to the contributions of young people present. Numerous issues were canvassed and this is what follows is an attempt to summarise the main ones.

Issue: Diagnosis

A common widely felt concern was that ophthalmologists often seem to be ill equipped or otherwise unable to provide the sensitive, helpful counsel to both the affected young person and the family that is needed at the time of diagnosis and immediately following it.

Compounding this is the fact that diagnosis is typically unexpected and traumatic for the affected young person and family so that it can be very hard for them to take in whatever helpful verbal information the ophthalmologist does offer.

There is a felt need for professional post-diagnosis counselling to help affected people cope with assimilating information to assist them to go forward.

It is felt that ophthalmologists should at the very least be the beginning of such a counselling process and should be prepared to actually refer the patient with a newly diagnosed retinal dystrophy to an appropriately qualified counsellor.

It was felt also that the ophthalmologist should be making the newly diagnosed individual/family aware of the existence of the Retina Australia member body in the particular State or Territory as a source of further information and peer support.

It was suggested that the education of ophthalmologists could give more attention to the handling of diagnosis and its aftermath, particularly where inherited degenerative diseases of the retina are concerned.

Issue: Openness

It is essential for young people and parents to be frank with others regarding the young person's retinal dystrophy. Denial and covering up are not helpful. In fact, people are generally very positive when they are aware and it is only through awareness that teachers and others can have the opportunity to make constructive adjustments to educational and social environments. Where necessary, parents can only require schools to take steps to offset educational disadvantage where there is openness.

Issue: Independence of Movement and Action

A major issue for vision impaired young people is to be able to develop independence of movement so that by the end of their secondary school years they have the ability to move about independent of parental transport. The clear message was that parents can play a positive role by not prolonging dependence and, instead, by actively supporting the progressive development of the independence of movement essential to the individual pursuit of life interests and social interaction.

Issue: Personal Identification

Young people experience discrimination when they have no driver's licence for personal identification purposes. This is keenly felt. The recent introduction of the Blind Citizens Australia identification card for its members was noted but this is not yet widely enough known and recognised both within the vision impaired and general communities.

Issue: Parental Worry and Guilt

The point was made that it does not help young people for parents to harbour any misplaced feelings of guilt or to worry unproductively about their future.

Issue: Attitude

The key as far as the young people present were concerned was to get on with living. The emphasis for the affected young person and family alike was to preserve hope in life and a positive approach. They put store in having a good sense of humour and being ready to join with friends in having a laugh about aspects of vision impairment where appropriate. Recreational activities for the vision impaired were seen as both valuable in themselves and for making social contacts. Several young people had derived great benefit while at school from special holiday trips organised by some vision impairment agencies and recommended these to parents.

CONCLUSION

It was very interesting to the observer that the level of concern of participating parents was much greater than that shown by the participating young people. Parents were understandably concerned for the future of their children, whereas the focus of the young people was on getting on with leading fulfilling lives. However, the young people felt strongly about those issues which have most impacted on them in childhood, youth and the present.

The major theme that stood out was that parents could best help by fostering the progressive development of autonomy and independence, while continuing to be positively supportive.

As we left the workshop grateful for the insights the young people had shared with us, we could not help feeling impressed and heartened by their contributions.

 

 

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