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

Timing: Allow about 15 minutes

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.

Download this video clip.Video player: Video 2

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Transcript: Video 2

JO ROACH

For my daughter. And you, Susie, what should I leave you? Not the pewter statue of the boy, his right hand missing. Let him stay on the mantlepiece for the second-hand dealers. Not photos of my mother, who died before you were born into that grieving time, not money to be banked for you by someone else, not my poems. You'll never read them. But the very fiercest of watchdogs who wouldn't sleep for 100 years.

I'm Jo Roach. And I have a daughter, Susie, who has a learning disability. My daughter is now-- she's going to be 39 very soon. Looking back over the years, it's been a hard, hard journey. My level of anxiety is often so high. It's because of the person with learning disabilities' vulnerability. The child part of them is so present in your mind. Even though they're 39, they're still-- to you, they're that child with all that vulnerability.

Is Susie OK? That's always present in my mind. And I think about situations where-- can I take Susie with me to that place? How will she fit in? How will we fit in? So there's-- I think there's a lot of isolation.

OWEN

Well, I was a teacher for many years. And during that time, Dora lived with my parents. My father, I seem to remember over the years, was really very concerned, sometimes even obsessed about what Dora's future was going to be. As years went by, my father died.

Dora continued to live with my mother. She started getting elderly, and she really couldn't look after herself and Dora. So the two of them moved in with me. I then took early retirement from my teaching. Then my mother died, and so Dora just continued to live with me.

She's quite a placid, calm, likable sort of person who gets on well with people and is a pleasure to live with. I think myself quite fortunate. Dora goes to a day centre called Daylight. And she goes there five days a week. And she loves it down there. All her friends are down there. She has a terrific time down there.

I've been looking in to the possibility of Dora moving into her own independent supported accommodation for some time. Since my health has taken a bit of a turn, I've asked if this could be-- the whole process could be accelerated a little bit. I don't think it's unkind to say this. A lot of carers hope that the person that they're caring with will die before them because that solves one problem.

It looks as though she's going to outlive the lot of us now, though, the way things are going to be honest. I recall all the comments that my parents used to say. Make sure Dora is OK. Dora must be looked after. All these thoughts come back to me. And it does get a bit scary when you actually have to take the leap.

The carer doesn't believe that anybody else that can care for that person as well as they can. That was certainly the view of my parents. And when I was younger, I used to think how silly they were. But now I'm in exactly the same position that my parents were in. I can see exactly what they meant.

End transcript: Video 2

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Answer

Here are some of things that the family members mentioned:

• What will happen when I’m gone?
• Fear/ anxiety
• Love and devotion
• Grief
• Desire to protect
• Worry
• Isolation
• 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.

Next you will consider the sense of exclusion family members feel in society.