Tag Archives: Scope (charity)

I did a head and beard shave to help other families like us

Peter’s daughter, Elara, has cerebral palsy and has used Scope’s Sleep Service.  Peter wanted to help raise awareness and money for Scope so organised a fundraising event.

In this blog post, he talks about his fundraiser and how you can organise your own.

We saw how hard it is for some parents to cope

My daughter Elara was born 8 weeks early. The doctors and neonatal department soon discovered haemorrhages and believed this happened whilst she was still inside the womb. As time progressed, it was apparent that she had hemiplegia which would affect all her limbs especially her right leg and this was an indicator that she did have cerebral palsy.

A smiling baby in a high chair
Elara smiling and happy

We’re active on social media and on Facebook groups for parents of children with cerebral palsy and we saw how hard it is for some parents to cope. While the challenges facing Elara are comparatively mild others aren’t so lucky and the condition can have a significant impact not just on the children but on their families as well.

Visiting a Scope sleep clinic

My wife visited one of Scope’s sleep clinics. We found it useful and being there confirmed we were doing the right things to get Elara to sleep and we now know what Elara needs. The service was easy to access and was only down the road from us. We gave them a call and luckily there was an available appointment on the day. These services are so vital to helping parents in the same position as us.

I was only meant to do a head shave

A friend of mine did a head shave for charity a few years back and I thought it would be a great event as people always want to see their friend or colleague do something daft.  So, I wanted to help raise awareness and money for Scope.

My target was £250. I was only meant to do a head shave, but I mentioned in passing to one of my colleagues asking how much it would take to get sponsored to shave the beard off.

A man in a Scope tshirt, looking at the camera, holding a phone. He has a bald head and beard.
Peter halfway through his challenge

It then spiralled out of control in a good way, my colleague emailed out that we needed to get to £750 donations to get my beard shaved off. To my surprise this happened.

A man sat on a chair, holding all of his shaved hair and beard in his hands. He is looking glum.
Peter at the end of his challenge

The support from my family and friends was brilliant especially the support from the office.

Just before the shave we were below £600 but, on the day, someone made a large anonymous donation to get to the £750 target.

My Chief Executive Officer came back from sabbatical and increased the donations to reach £1000. I was so overwhelmed by the generosity that everyone showed.

Aside from seeing the generous donations come through for Scope, the most enjoyable part was the shocked faces from people! I was getting lunch just after the shave and people who I worked with walked straight past me.

The support from Scope was great and it was nice to see that the team were keeping in touch to see progress and how things were going. A lot of places will leave you to do it and you won’t hear from them.

It’s such a good feeling knowing you can help

I would absolutely recommend organising an event like this or any type of event for charity. Personally, it’s such a good feeling knowing you can help and the effort you put in gets a tangible result, to invest in the services to help disabled people.

I’m a firm believer of paying it forward to help each other to make this world a better place. It is important to understand that everyone is bound together and can achieve great things.

My target was only £250 however through the generosity of colleagues, family and friends I was able to raise £1085.18 for Scope.

I wouldn’t do anything different, I think I really hit the nail on the head with this event. However, if I was to do it again, I would organise a different type of event. Something like a physical challenge.

We want to support even more families like Peters by funding services like Sleep Right, improving sleep for disabled children. Find out how you can get involved on our website.

What is Britain saying about disability? Part 1: the dominant story

The game changers

Scope summary of research by Linguistic Landscapes. linguistic logo

With our next campaign we want to work with others to begin shifting attitudes towards disabled people for the better. Recognising the power of language and its influence on how people think and act, we wanted to build a comprehensive picture of how people – both disabled and non-disabled – are talking around disability.

As well as our research into public attitudes towards disabled people, we worked with Linguistic Landscapes (who have previously partnered with organisations including Oxfam GB, Prostate Cancer UK, the NHS and various companies) on a ‘discourse analysis’ – basically an analysis of how people talk and write about disability. They analysed over 500 texts from 2010 to now across the media, companies providing disability services, disability charities (including Scope) and campaigners, the Government, blogs, social media and elsewhere on the internet.

In this first summary of their research, it shows there is a dominant way of talking about disability that’s entrenched in Britain today. The main narrative that’s out there – accidentally or intentionally – says that disabled people are seen as passive, homogenous not individuals, separate from ‘normal’ society, hopeless and voiceless.

Passive

      • Things happen to disabled people by others. Movement is a common metaphor and also disabled people being described as recipients: “changes to social security aren’t helping disabled people, they are pushing them into poverty” ; “how on earth they had justified throwing disabled children to the wolves”
      • Many tend to talk about rather than to disabled people:
        “they/them” not “you”
        “more than 100,000 disabled people are or risk soon being denied vital care and support”
        The voices of disabled people themselves are less evident in the mainstream than voices speaking about disabled people.
      • Where disabled people do themselves speak, there is often limited visibility of their impairment
        Disabled people’s voices appear mainly in writing, on the radio and only more recently on TV. This is partly why Paralympics was so radical by showing disabled people visibly and prominently.

‘Other’: separate or different from the mainstream 

      • Disabled people are often put with other marginalised groups
        “Sick and disabled”, “Old and disabled”, “The poor and disabled”, “Women, children and disabled people”, “BME, women and disabled (students)”.
      • This powerfully sustains an invisible norm that’s taken for granted, the ‘normal’ are the able-bodied, the unimpaired, men, straight people, white people, the non-poor etc.
      • Disabled people are overwhelmingly featured as the exception
        “Those with a disability are twice as likely to live below the poverty line – and more likely to be victims of crime”
        “Disabled people are more likely than non-disabled people to experience material deprivation”
      • Common metaphors of war and survival reinforce the sense of difference
        “parents battling for support”, “barely surviving”, “war on welfare”

 Homogenous: a mass group 

      • Stripping away people’s individuality – when terms like “disabled people” are used a lot, the person is defined only by their disability and they can lose individual characteristics , even as to whether the disabled person is an adult or child. There is very little about important aspects of pleasure, like humour, relationships and sex.
      • Stories of individuals are powerful but unfortunately too often these are negative, e.g. individual ‘benefit scrounger’ stories. These have particular power when people have little understanding of the wider group of ‘disabled people’. 

Work and individual responsibility: a massive topic

      • Not working is immoral – A recent and now major context for many conversations related to disability is work, for example in politics and the media. It is a moral discourse where you are only valuable – and ‘normal’ – if you are in employment.
      • The ‘benefit scrounger’ narrative fits within this, where being passive (not working) combines with being separate (different from the majority of hardworking people), combines with individual stories.

Some of the other findings showed that disabled people are often described as special and vulnerable, in an inevitably negative situation and permanently disabled with little understanding of the nuance of people’s impairments.

What do you think? And what are the alternatives?

The end result of the language we all use isn’t necessarily intended – often it can just be unthinking.  Because there is such an established way of talking about disabled people, most people won’t question it most of the time. But seeing it laid out here sparks thinking: is this the picture we want to paint or a different one?

Please comment below or tweet with the hashtag #ScopeGameChangers.  

We have now published the second part of our findings – some of the alternatives to the dominant narrative and hope for change. Let us know what you think.