Parent power: What families can do to secure the support their children need

All parents of deafblind children have a story to tell about their journey to get the right support for their children.  Last week I spoke to Elaine, whose 16 year old son has never received specialist support for his deafblindness and had his first Deafblind Guidance assessment only a few weeks ago.  Another parent told me about the long dispute she had to go through because her local authority started to question the need for support from an MSI teacher for her daughter. The struggle can be time consuming and sometimes overwhelming.  And sadly it may not even have a happy ending, leaving some parents feeling isolated, frustrated and powerless.

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Having your say in May

Today is National Voter Registration Day.  Are you registered to vote?

There is something very satisfying about voting in an election. We are having our say on who should represent us in Parliament, who we most believe will listen to our concerns, stand up for the things that matter to us and work to make the world a better place. In closely contested elections, our vote could change who becomes our MP and who forms the government. It could change the course of events locally, nationally and even internationally.

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Be My Eyes

A screenshot of the Be My Eyes app, with somebody identifying a tin of tomatoesIn our latest technology oldblog, we’re going to look at a new app that has received a fair bit of attention recently.

Have you ever been frustrated because you can’t read the cooking instructions on food? Ever been worried that the milk in the fridge might be off? Well, now there is an app than may be able to help you with these and other situations where sighted assistance would be helpful.

A new app, called Be My Eyes, allows blind people to video call with a sighted volunteer who can help them. Just point your phone or tablet’s camera at whatever you need help with (the label on some food for example) and the sighted helper will talk you through it. I have even heard of a situation where a blind person used the app to help direct them to the information desk at their local train station!

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Looms of sound

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An eTextiles workshop ran at Touchbase South East creating looms that were then connected to a computer that made different sounds when touched in different places.

Below is some feedback from one of our Sense artists providing a great MSI perspective on the workshop:

Well, I think the weaving was a bit like the wool.

It’s made from sheep’s wool. I just weaved it. Feel the different textures of the wool. I think it’s a ball of wool.

Felt a bit like felt tip pens. To make sounds with.

The dononong sounds!

I think it sounds like  instruments. I think the lady came to visit. Emily and Sarah.

 I think I enjoyed it. I like to do it again.  Rebecca was really good to work with me and Veronica.

I think different sounds like animals from the farm .  

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I took my weaving home.
It smells like sheep’s wool.  I think it was a good session.

It was hard because the wool was a bit soft. I think people have to tangle the wool sometimes. In and out with the wool; in and out and shake it all about!

Thank you for helping us with the weaving.

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A special thanks to Emilie, Sarah and Janet from the Open University for the opportunity.
Please check them out for more information via www.twitter.com
Emilie @me_backwards
Sarah @oopsohno
Janet @JanetvdLinden

All the world's a stage: and other things we learned at the Globe

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As part of our Sense Arts and Wellbeing programme, we have been focussing on accessing culture. Working with our friends at the Globe theatre, we took a tour of the space. It was all very exciting and we are really looking forward to experiencing Othello in a few weeks time..

One of the artists we support had this to say about the experience from an MSI point of view:

About the Globe Theatre. Good.

We stand on stage. It made an echo sound. It was cold and windy because there was no sunshine and no roof. I felt the very big pillar that holds up the stage.  

It feels like a pop star being on the stage. I think there was a dressing room; people go to dress and have make up on. There was a man talking to us, called David.

It’s a round shape like the world. Underneath the stage was different. There was some steps to go down. The trap door, disappearing like a magician. I think there was a bit of wood in the stage. It was made from oak, an oak tree.

I did like the Globe Theatre. We go to a new place in the van. We met one of my friends from college and Sense of Space. I think it’s very noisy when you go in the theatre, like Dalston Theatre (The Arcola).  

William Shakespeare. I think its William Shakespeare. I think he’s a man what wrote stories. We are going in March to the play. A play is a bit like a musical, but a play doesn’t have any songs in it.

I think there was a café. That’s where we had things to eat. The food. I would like to go again to the theatre. Thank you for having us.

 

A huge thank you to David Bellwood for the tour of the Globe theatre. This was a great experience for the multisensory impaired people we supported there. We look forward to visiting again soon.

Making healthcare accessible for all

In my role as the Health Policy Officer for Sense I spend a lot of time listening to the views and experiences of deafblind people on the healthcare services that they access.  The other day I was talking to Joanne who told me about how she nearly missed her flu vaccination because it was being advertised using posters in her GP waiting room which she couldn’t see as she is blind; thankfully her husband saw the poster and mentioned it to her so she was able to ask her GP about it in her next appointment.

There are so many aspects of healthcare services that need consideration for those who are deafblind – more than I initially realised.  These range from needing appointment letters in accessible formats (e.g. braille or large print) so that the person can know when their next appointment is, to having appropriate communication support (e.g. a deafblind manual or BSL interpreter) booked for appointments or stays in hospital.  Other considerations include the lighting and layout of clinics as well as how to know your name is being called in a waiting room if you can’t hear or see the doctor or nurse.

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Poems of the River

Our Poetry Project has well and truly begun, and this week in Spalding, Lincolnshire our Sense team welcomed Poppy and Laila.

The group began with some games to make human sculptures – boats, televisions and elephants all featured! The project is all about multi-sensory poetry. Where do poems come from? How do we tell stories about the river? How do we share those stories?

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Some of the participants spent the first session trying to teach Laila some sign language, and the group started to build a shared vocabulary with critical words for the project. This is a really important feature of all Sense Arts projects. Words like river, boat, duck, bridge and fish need to be understood by all.

Stories of eel fishing in the Fens started the conversation and preparations began for the next phase of the project working with the 16th century stately home, Ascoughfee Hall, who will be playing an important role in hosting our poems later down the track.

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Staff from the museum will be sharing objects from their permanent collection with the group, and the theme of rivers will feature strongly. There’s talk of fishing nets, oars, eel traps and even a few stuffed kingfishers and herons.

I’m always impressed by the incredible creativity the artists we support have. It’s not always simple to imagine how an artform could be made accessible, but the artists we support teach me something new every day.

Stay tuned to watch the project unfurl in Spalding and London!

 

 

What do you want from your MP?

Molly Kearney, Parliamentary Manager

Molly Kearney

On Tuesday afternoon I was in the Stranger’s Dining Room in the House of Commons for the launch of an Every Disabled Child Matters report (we contributed to the writing of the report, which you can read on the EDCM website) .

I was with Lesley, mum to 7 year old Ruby who has CHARGE, and we had the chance to talk to several MPs about Lesley and Ruby’s lives. It was a brilliant opportunity and Lesley was an incredible champion for Ruby, Sense and other families with disabled children

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Advances in technology are changing the ways people access audio books

Steven Morris
Steven Morris

In this month’s oldblog, we’re going to look at audio books and how advances in technology are changing the way people access them.

For many people unable to read print, audio books offer a great way of reading the books we love. The RNIB launched their ‘Talking Books’ service way back in 1935 on gramophone records. They did this as soldiers who lost their sight during World War 1 found learning braille difficult. Since then, the RNIB have sent out many millions of talking books on record, cassette and now special ‘Daisy’ CDs.

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