3.1 Advocating for life

Many people with learning disabilities rely on their families to advocate on their behalf. This is a role that often lasts a lifetime, and the physical, mental, emotional and financial impact on family carers can be significant.

Activity 5 Parent perspectives

Timing: Allow about 10 minutes

Watch this video from Learn with Us where you will hear short accounts from three parents: Margaret, Jean and Norman. You will also hear briefly from Maureen, a practitioner. As you listen, make a note of any comments made by the parents that really stand out for you. Also make a note of how you think the parents’ lives have been affected by their caring responsibilities. Write your thoughts in the box below.

Download this video clip.Video player: Video 8

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Transcript: Video 8

MARGARET

You're interfering when you come and you says, has he done so-and-so? Or, where is his clothes? Why is his clothes so-and-so? You're interfering.

Because he doesn't have a voice. Well, I personally feel that I'm his voice. Well, they probably think I'm an overprotective person. Maybe. Maybe they think I'm overprotective.

Right now, I'm talking to you now and I'm thinking about him now. Today is Saturday. Maybe they have taken him swimming. Yeah, maybe. If not, he's probably in his room there.

MAUREEN

Family carers have had to be tough. They've had to develop a persona that says, no, that's not good enough, maybe force them to be ways that they wouldn't naturally be. But they've not had an option because you know being quiet and passive won't get what your son or daughter needs.

NORMAN

We're Jean and Norman Wilson, parents of Tara and Victoria. Victoria is severely disabled. We are London working class. Jean?

JEAN

No, I agree with that.

JEAN

After a series of places where it didn't work well, we decided she should live in our own home. She has a team of workers-- mostly young women, a couple of young men-- handpicked by the service provider, which is Centre 404, who we trust. And she's lived there safely and happily for 22 years.

We know with Victoria's house, she and her fellow co-tenant, they are the most important people. And everything else works out from them. And also that we are involved as equal partners, really, as part of her team. And that's taken us a long time and a lot of tears, anguish-- and there have been rewards as well-- to get it that way.

NORMAN

My memory of everything that's happened over the last 40 years is, at times, patchy. A lot of it is gone completely because things were so horrific that I think-- in those circumstances, you do tend to blank out. We've had everything and everybody, people that have been very good and people that you wouldn't trust with your cat.

JEAN

Where Victoria used to live in the past, we weren't part of her life. She was part of an institution. We could only go in on their terms. And I used to come away and that's when the heartache and the impotence is there. And I know for parents who don't and can't say anything, it really damages their health.

End transcript: Video 8

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Video 8

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Discussion

Comments that you might have noted down include: ‘horrific’; ‘I feel I am his voice’; ‘lots of tears and anguish’; ‘parents have to become tough’; ‘damages their health’.

You may have identified that the parents experience: constant worry (including when the children leaves home); anxiety about being seen as overprotective; trying to strike a hard balance between advocating but being viewed as ‘interfering’; having their own life chances affected.

Family advocates could be helped by being listened to and developing trusted relationships with services and practitioners. Jean, one of the family carers in the Learn with Us film, said:

Figure 1 Developing trust in services can be difficult for family carers

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The image shows a quote from Jean, a family carer.

The definition reads: ‘The biggest thing for family carers is to realise that other people can actually do things with your son and daughter far better than you. Took us a long time to recognise and appreciate that. You think you’re the best in the world and no one else in the world can do it but you. And you can’t.’

Figure 1 Developing trust in services can be difficult for family carers

Self-advocates and family advocates often fight for very specific improvements to an individual’s life. But they also come together collectively to press for wider social change. In the next section, you will learn more about the changing policy landscape in learning disability in recent years, and the impact this has had on people’s lives.