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Challenge Newsletter Winter 2015: Speaking Out

Vivien Cooper's thoughts on 'Speaking Out', the theme of our winter 2015 newsletter. You can download a pdf copy of the newsletter, or read it online. To sign up to the e-newsletter, use the sign-up form on the right of this screen. Order a hard copy by emailing communications@thecbf.org.uk, or calling 01634 838739.

 

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I often try to put myself in Daniel’s position – “if I was him, what would I do?” It can be very revealing as I often conclude: “yep – I would do that too!” Daniel can’t tell me in words how he feels or what he thinks – but if I was him I would want as many people as possible on my side, fighting my corner, making sure I am loved, cared for, and able to do things I enjoy with people I like. Ordinary things – things most of us take for granted.

When Daniel was a baby I quickly realised that unless we were vigilant, an ordinary life would not be what Daniel
experienced. 

I know one family carer who is a wonderful advocate for her daughter, and has been for many years, who describes herself as “a very private person”. But she has had to attend numerous meetings with “professionals”, negotiate systems and processes across education, health and social care, be assertive and insistent, whilst always remaining reasonable and maintaining positive relationships. It is hard to be a lone voice asking questions – to disagree and to challenge, to be labelled as “difficult”. But what is the alternative?

Some people are able to take this on without support. But most of us need a helping hand – to be armed with information, to know our rights, and to have people alongside us who understand and empathise. And sometimes we need others to help champion our cause – to be the voice where we can’t be.

This newsletter describes how people are speaking out in a range of different ways and what they have found helpful – whether it is advocating for individuals, or trying to effect campaigning. For many years the CBF has tried to equip families with information that helps them to achieve good outcomes for their relatives – through individual telephone and email family support, information resources and by connecting people. Alongside this, we campaign on issues such as the overuse of medication. As well as providing specific information resources and practical support for families, the CBF consistently raised this issue at a national level. This summer, reports were published providing clear evidence of the overuse of medication. These reports are a step in the right direction, but what is important is what action will now be taken, and so we will continue to press for change. We can only do this through the families who support our campaigning – who generously share their expertise and experiences, and stand up for their relatives.

But not everyone has a family to advocate for them, and not all families are able to. The families who campaign with us are mindful of those individuals and their vulnerability. 

If for any reason I was unable to advocate any more for Daniel, I know that others, friends and family, would continue to do so. We need to get to a place where we all speak up and speak out so that children and adults with learning disabilities have the life opportunities they have a right to. That is the aim of the CBF.

 

Vivien Cooper OBE

Chief Executive and Founder of the Challenging Behaviour Foundation

19/11/2015

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