1 Family experiences
In Session 1 you heard from people with learning disabilities. You will now hear from some people whose close relatives have a learning disability.
Activity 1 Hearing from families
For this activity you will be watching two family members talking about their relatives with a learning disability. They share their hopes and fears. As you watch, note down the main issues they mention. You might like to highlight certain words or phrases that recur and any underlying ideas that you notice.
Transcript: Video 2
Here are some of things that the family members mentioned:
- What will happen when I’m gone?
- Fear/ anxiety
- Love and devotion
- Desire to protect
- A lovely person to be with
- Intense emotion.
The emotions for those who have a relative with a learning disability are mixed. Phil, whose sister Bernie you met in Session 2, has spent his life looking out for Bernie but has loved having her as his sister: as it has had a positive impact on his life and given him a greater understanding of others. While many relatives would agree with this, they would at the same time worry about what the future holds, particularly when they are no longer there to care for them. You will look at this in more detail next.
Box 1 What will happen when I’m gone?
Looking ahead to a time when parents or relatives are not there to keep that watchful eye has always been stressful for families. In Video 2, both Jo and Owen talked about their fears for a time when they are not there to protect their relative. The title of a book published in 1981, After I’m Gone what will happen to my handicapped child? (Sanctuary, 1981) sums up one of the major fears of families to this day.
In Video 2, you heard Jo talking in her poem about the ‘fiercest watchdog/who would not sleep for a hundred years’, and Owen saying that many families wish their son or daughter would die first. This reflects some of the struggles families have in trusting other people to take care of their daughter or son, brother or sister.
Next you will consider the sense of exclusion family members feel in society.