People like me should have a voice #BornRisky

Guest post from Kate Caryer. Kate is one of five people with communication difficulties who have joined Channel 4’s continuity team this December, to introduce some of the channel’s biggest shows.

Along with brain surgery, bar maiding and ballet dancing, continuity announcing was a career I had never considered suitable for me, as a person with athetoid cerebral palsy and no speech.   However, along with four colleagues-turned-mates, each with different communication impairments, I’ve joined Channel 4’s continuity announcers for 10 days in December!

To get some idea what I am on about, watch me here introducing my all time favourite show, The Simpsons:

I am on a mission to tell the world that people like me should have a voice! Being a continuity announcer fits right in with this aim I think!

So how did the Channel 4 thing come up? Well, I entered a singing competition!!!

As I can’t speak, let alone sing, I was told to go away!  So I decided to give this continuity announcing lark a try!  (Only joking.)

Actually what occurred is that the clever minds who came up with the idea of having voices from people with different communication difficulties announcing their peak-time shows, contacted organisations and charities that work with such people. This included Communication Matters, which is an organisation that is about AAC (augmentative and alternative communication) – or other means of communicating for people without clear speech. They share my passion for greater awareness of communication aids and non-speech communication.

The chairwoman contacted me about this possible opportunity and I absolutely loved the concept!!  (I would love the idea even if I wasn’t involved!)  

I was asked to do a screen test at Channel 4 in September which was really exciting! Due to the uncertainty of the project (at this stage, it was just a good idea) I was sworn to secrecy.   I wanted to tell absolutely everyone, especially the people at the Communication Matters conference in September that I attended just a matter of days before I went to Channel 4 for the first time!

By coincidence, at that Conference I delivered a presentation and discussion on the media portrayal of AAC users.  Like most disability media portrayal (Paralympics excepted – thank you Channel 4) it is often pretty dire and full of pity for the so-called ‘victims’ of impairment.  It was agreed that AAC users should be shown in the media doing things other than simply being an AAC user.

This is exactly what Channel 4 is hoping to achieve with this project when they say, “we want to give them a platform and normalise the presence of disabled people on TV by adding fresh, representative voices to the rich diversity of our existing pool of announcers.”

I have no speech at all so I use a communication aid called a Pathfinder.  I am lucky I am able to use a keyboard to work a special programme that uses icons to speed up communication. However there are many communication aids meeting the needs of most people who can’t speak, whatever the level of their physical skill. That I use a communication aid has become a matter of fact to me, my family and friends. What is interesting is how unknown people react to me using, what seems to them, a magic box.  I must say the reactions have been odd, not down-right negative fortunately, like when I go to quiz nights everyone wants to be on my team because they assume my communication aid can magically get all the right answers!!

The great thing about Channel 4 is that we were treated like any continuity announcer, so we wrote our own scripts; hence you would hear our own voices, albeit mine with some fantastic tweaks from the Wonderful Wendy who worked as hard as me programming my communication aid to sound fantastic!

The Wonderful Wendy is one of my partners on the Unspoken Project, a theatre project where the issue of communication is at the centre. This is important because, like television and other media, we think the world of drama rarely gives voice to people with communication difficulties and we want to change this. We hope to do this by a number of ways.

One of our plans is to produce a play where the main voice is from a young woman who has no speech. We want to tell the unspoken story of her getting a voice and coming of age. At the moment we are holding variety nights on 25 January and 18 March at Tottenham Chances, 399 High Road, London, N17 6QN. Entry is £7. All proceeds will go towards the Unspoken theatre project.

The nights put all kinds of voices in the limelight. If you would love to perform on one of our nights, we would be delighted to hear from you! Also we are always looking for audience members to come to our January and March shows.  You can contact us by e-mail unspokenprojectaac@gmail.com, follow us on Twitter or like us on Facebook – watch this space for our website!

Speaking out for Care – The second reading

Guest post by Ben Parker, Parliamentary Assistant at Scope.

Monday marked a significant day as the Care Bill entered the House of Commons to be debated by MPs for the first time. With the Government choosing to have the Second Reading in the last week of Parliamentary business before the Christmas Recess, and falling the day after Nelson Mandela’s funeral, there were understandable concerns that the Bill wouldn’t receive the political attention it deserved.

For disabled people the Bill has huge importance. It marks the first move towards building a preventative and sustainable social care system after years of political neglect and chronic underfunding.

The opening exchanges between Secretary of State for Health Jeremy Hunt and Shadow Secretary Andy Burnham were fiery; a reminder of the political tensions between the two parties before the last election and fuelled by strong feelings on either side of the Chamber around the Care Bill. Speaker John Bercow was forced to interject at length in an attempt to maintain order as Hunt and opposition backbenchers traded verbal blows.

It was disappointing that the Secretary of State’s opening remarks failed to recognise disabled people’s role in the debate. Instead he focused on the NHS, the bolstering of the role of the Care Quality Commission in safeguarding health services and in particular, the administration of enforced service changes at Lewisham Hospital.

But there was also encouragement – Scope’s Britain Cares campaign has focused on addressing the eligibility threshold for social care and ensuring that all disabled people who need access to the care system to live independently can do so. Without this, the Government’s welcome ambitions for the Care Bill risk not being realised. The media also picked up on the story, with Sky News yesterday highlighting eligibility with the powerful real-terms implications for disabled people going without care.

This campaigning has had evident impact. Several backbenchers including David Ward (Lib Dem – Bradford East) and Anne McGuire (Labour – Stirling) chose to focus on this issue, McGuire arguing that if “social care is to mean anything to the lives of the disabled, it should be underpinned by a real recognition of the importance of an independent life.”

John McDonnell (Labour – Hayes and Harlington), Emma Lewell-Buck (Labour – South Shields) and Bill Esterson (Labour – Sefton Central) took the opportunity to highlight the statistics published by the Personal Social Services Unit at the London School of Economics, emphasising that the Government spending on social care has not kept pace with demographic change. McDonnell summarised: “those with moderate needs, which are still significant and should be within the system, are being ignored completely. We need to address this matter with some seriousness now and try to reach some all-party agreement on the way forward.”

The former Communities and Local Government Minister Hazel Blears outlined that failing to address eligibility had implications for the ambition of a preventative care system. “If we are talking about the well-being duty and the duty to prevent, reduce and delay somebody’s need for care, how can we say that we are going to support only people with substantial and critical needs?”

The backbench Conservative MP for Swindon South, Robert Buckland, made a measured and eloquent case in agreement, calling on the Government to ensure that “local authorities’ understanding of prevention is wide ranging and includes the very types of low-level support that can make this prevention aspiration a reality.”

In response, the Minister of State for Care Norman Lamb was at pains to point out that Local Authorities could still choose to set their thresholds at lower levels, although as Burnham countered, legislating for only critical and substantial needs sends a clear political message. This freedom of choice would also seem to run contrary to the Minister’s desire for a simplified ‘in-or-out’ care system designed to eradicate the current post-code lottery of care provision.

The Government’s decision to bring the £3.8bn health and social care integration funding under the banner of the ‘Better Care Fund’ also appears to be an acknowledgement of the increasing political pressure around the importance of lower-level care.

We will continue to watch closely for the amendments at the Committee Stage of the Care Bill. With your help as part of the Britain Cares campaign, we will continue to fight to make the legislative reforms as strong as possible and to ensure that all disabled people who need care can access it and live independent lives.