After the popularity of our recent post, Klatt’s Last Tapes, we have made the second in a series of videos profiling fascinating assistive technology stories:
Charlotte White’s Musical Fight is a BBC Radio 4 documentary that provides an intimate and in-depth look into the life of a young woman called Charlotte White, who, after an accident in her early teens, was left almost entirely paralysed.
The documentary looks back on Charlotte’s experiences post-accident; how she felt patronised by the immediate rehabilitation therapies she was offered, how she still desired to make music and express her creativity and the struggle to find her place as a teenager in mainstream society.
Video: Charlotte White’s Musical Fight
(for a video transcript: scroll to the bottom or use youtube captions)
In spite of her set-back, Charlotte showed determination to continue advancing the musical skills that she had shown such promise with as a young child, and with the help of assistive technology and the Drake Music Project, Charlotte was provided with a very modern method to allow her creative side to shine. Charlotte is now a professional classical musician and composer.
Drake Music is a charitable organisation that gives those with disabilities the opportunity to create music using assistive and adaptive technology, helping to provide a creative outlet to many who would otherwise struggle to use ordinary instruments or learn music via typical methods.
Founded in 1988 by Adele Drake, Drake Music is a nation-wide initiative with regional bases dotted around the country in London, Manchester and Bristol. Their ever-growing team of techs, teachers and advocates continue to work in partnership with numerous schools, universities and local authorities to provide musical opportunities, both creative and educational, to disabled people across the country.
Charlotte speaks of how her introduction to Drake Music was tentative at first, based-upon her previous experiences with music therapy. However, it didn’t take Charlotte long to realise that Drake Music was a far more innovative and beneficial tool than traditional therapies she had already dismissed, and with patience, understanding and ground-breaking assistive technology, she soon found a way to create music again.
“When I became disabled, I was introduced to music therapy. Music therapy is literally someone sitting in front of you banging a drum or playing a guitar, and you’re meant to tell them all your worries about life or you’re meant to be really happy because someone’s banging a drum in your face.
[I found that to be] patronising and very boring and completely pointless. And I expected Drake to be like that, but it wasn’t at all. Drake Music gave you the opportunity to play independently, rather than just sitting there listening like a lemon.”
Through Charlotte White’s Musical Fight, we are introduced to a strong-willed, determined young woman, brimming with creativity and promise, who with the help of the Drake Music Project, defies all opposition in continuing to sate her creative needs through the use of assistive technology, and the support of staff at Drake Music.
Charlotte has set up her own website at Enable Us:
Enable Us has been set up as a result of difficulties that my family, friends and I have come across over the years. The overall aim of the site and the project is to empower individuals with impairments, preventing society from disabling people and preventing them from fulfilling their potential.
We also have heard there is a project that Charlotte is working on using music and a certain revolutionary instrument…but we cannot say more at this stage. We are very excited about it! Watch this space!
Charlotte and Trabasack
We were very pleased to hear that Charlotte has recently become a big fan of trabasack and our new media mount accessory, describing it:
Please comment below the transcript and share if you have enjoyed the video.
00:01 S?: Now on Radio Four, we’ve the touching story of a disabled student and her struggle to play music. Josie D’Arby presents, “Charlotte White’s Musical Fight.”
00:22 Josie D’Arby: In 2008, a video clip appeared on the internet of a teenage girl performing the prelude to Bach’s Cello Suite. Nothing remarkable about this, you may think. Until you learn that the musician, Charlotte White, was playing every crotchet and quaver using only the slightest movements of her head and thumbs.
00:51 JD: This performance proved to be a defining moment in Charlotte’s rehabilitation, but it also raised questions about how musical talent and achievement are assessed. Questions that have yet to be answered.
01:17 JD: Well, I’m just arriving at the home of Charlotte, which is in a small village in Buckinghamshire, where I’m going to meet her and her mother, and just find out how much music has actually changed their lives.
01:43 JD: Charlotte, when did you first start playing music?
01:46 Charlotte White: When I was about six years old, I had regular piano lessons like all my friends did at school.
01:52 JD: Were you having examinations?
01:55 CW: I never did exams. My mom wanted us to play for fun rather than to play to achieve something.
02:01 JD: In those early days, did you enjoy doing the piano? Were you loving it?
02:06 CW: Not particularly. It was more something I did because we were all expected to do it. I didn’t start enjoying music until later on in life.
02:13 JD: So can I ask you just to go back to your accident really, would you be able to tell us what happened?
02:18 CW: When I was 11 years old, I used to ride a lot. I competed on a pony. And for a period of a year, I constantly fell off my pony for no apparent reason. The last time, I was in the stable yard holding my rabbit and guinea pig. And I fell over backwards and hit my head, and everything went downhill from there.
02:39 JD: And what was the diagnosis back then? Was it something that they expected you to recover from or what did they tell you could have happened?
02:46 CW: I don’t have a full diagnosis. I got diagnosis which cover some of my problems, but not all of my problems. They’re constantly finding new things out, even now, 11 years on.
02:58 S?: And not surprisingly, this had huge consequences on Charlotte’s quality of life.
03:06 CW: For a long period of time, my life had been about exercise, physiotherapy, occupational therapy, speech therapy and that was it. That was drummed into me day in, day out, day in. And all I was expected to do was achieve and get physically stronger, which wasn’t happening a lot of the time. So that was quite depressing that I was doing all this work and not getting much out of it. And that was the only life I knew. A lot of my friends had moved on by then. They were having fun at school, enjoying life, where I was just having physio, physio, physio. I would only see physios. I’d only see speech therapists. I’d only see people who were meant to make my life better, and improvement, but it never seemed to happen.
03:46 S?: After the accident, Charlotte gradually lost all movement in her body. She spent five years in and out of hospital, and eventually went into a period of rehabilitation regaining movement in her head and then gradually her fingers. At 16, Charlotte began attending St. Rose’s School in Stroud. It was there that she was introduced in the Drake Music Project. An organization that uses technology to help people with disabilities participate in music.
04:14 CW: Doug came up, and I had an option of a cooking class or going to meet Doug and see what Drake Music was about.
04:20 JD: Did you think back to your piano days at six, and think “I have a feel for music.” Did you know that you had a feel?
04:27 CW: When I became disabled, I was introduced to music therapy. Music therapy is literally someone sitting in front of you banging a drum or playing a guitar, and you’re meant to tell them all your worries about life or you’re meant to be really happy because someone’s banging a drum in your face.
04:43 JD: And what… You found that patronizing or what?
04:46 CW: Incredibly patronizing and very boring and completely pointless. And I expected Drake to be like that, but it wasn’t at all. Drake Music gave you the opportunity to play independently, rather than just sitting there listening like a lemon.
05:02 JD: And did that effect your attitude towards it? Tell me about your very first lessons.
05:07 CW: At the time, I had a huge sensitivity to light. Therefore, I wore dark glasses. And spent a lot of time in sort of a half lit room playing music and Doug getting me to interact with him to begin with, and then learning the basics and chords and beats. We listened to a lot of Robbie Williams.
05:28 JD: Was that educational? Or…
05:30 CW: It became educational. [laughter] Very surprisingly.
05:37 Doug Bott: We were working one-to-one, in the dark, very quietly because at the time, she was very sensitive to light. So the only light in the room was the glare off my laptop screen. And the music we were playing was so quiet, that actually the whirr of the fan on the laptop was almost louder than the music at points.
05:57 S?: Doug Bott was the first person to work with Charlotte to create music.
06:01 DB: Sitting on the table we have, what we call a ‘magic arm’, it’s a piece of equipment which can fix any piece of technology in just about any position around a person’s body and attached by Velcro to this arm is a fairly and spectacular-looking back rectangular box, which is a magnetic motion sensor. So, it emits a small magnetic field and you can assign pretty much anything that you want to that magnetic field. So, in Charlotte’s case, we assigned about seven or eight notes to it and she was able to make very small head movements in order to play those musical notes. Then she had one switch, very small switch, on each thumb. One the switches did a very simple task which was to turn the sound that she was playing on and off, so that if she wanted to move her head without playing music, she could.
07:01 DB: The other switch controlled with her other thumb changed the configuration of notes available to her on the motion sensor that she was playing with her head. So, it’s… Liken this to playing a guitar, it’s as if the right hand that a guitarist would normally use to finger pick the notes, to pick out the individual notes, this is as if the right hand was her head moving in and out of the motion sensor to pick the notes. And then the guitarist’s left hand, which changes the cord shapes on the thread board of the guitar, the role of the left hand was taken by the switch that Charlotte was using to change the configuration of notes available to be played by her head.
07:42 JD: What was your first impression of Charlotte?
07:45 DB: My first impressions, somebody who was interested in classical music which not many of the young people I was working with at the time were. Somebody who is interested very much in working on her own in her own way. So yeah, the early sessions were very much about finding out what she was interested in and also how physically and practically she was going to create music, perform it, learn about it, compose it.
08:20 JD: At what point did you think she has got something special?
08:28 DB: I think it was just before, a few weeks before the first time she actually performed in public. I’ve been very careful not to put too much pressure on her to move forward and to achieve. I was very happy for her to go at her own pace. But she knew there was a concert coming up in school and she announced that she wanted to be a part of that, that she wanted to perform in it. Given the rate at which we had been working in the previous months, I was a bit nervous because I didn’t really think that she would be able to get the piece together in time to be able to perform it, but she did. She really knuckled down and applied herself and practised an awful lot outside of our sessions, which was quite a thing because the equipment that she was using at the time, I wasn’t able to leave it in school. So, when she was practising by herself, she was doing it entirely in her own head and making the movements from memory without the equipment. So, yeah that’s when I realized she has something special because the music it was in her head.
09:47 CW: That was very scary. I was outside waiting to go on. Like, “No, no, no, no. I’m not gonna do this.” And Doug was like, “Yes, yes, you are.” Like, “No I’m not.” He was like, “Just calm down and relax. If you don’t wanna do it, you don’t have to.” I was like, “You are not meant to say that.” [laughter] And eventually I got on the stage and Doug came on with me because I wanted him there, and I performed in front of everyone and I got really shaky and nervous as I had never performed in front of people before then. And it went reasonably well, I think, and piece came out maybe a bit too fast, but it went well enough. Everyone seemed to enjoy it and quite a few people were surprised I think.
10:29 JD: Did you have family and friends in the audience?
10:31 CW: My aunt was there and my mum.
10:35 S?: And for Charlotte’s mum, Tessa, seeing her daughter’s transformation was nothing short of remarkable.
10:41 Speaker 4: It was fantastic and she is really very good. She had been through such a rotten time and it just gave her something that she could achieve, and it was just wonderful as a mother to see her doing so. That’s why I am gonna cry.
11:00 S4: [11:01] ____. [laughter] It gave her something which she could achieve and be successful at. And as a parent, it was just wonderful to see that the determination she had actually was successful and she was good at it. It was very good.
11:24 JD: Has the music changed Charlotte’s life?
11:29 S4: I think it was the achievement of being able to play performing in front of people was I think was incredibly nerve wrecking for Charlotte, so the fact that she managed to do it gave her a little confidence which I think also then helped in other spheres of her life, so academically and probably socially as well. And I do think its helped her realize that she can achieve anything she wants to if she puts her mind to it.
11:56 JD: Relative to your memories of playing the piano, playing music in this way, does it feel similar if that makes any sense?
12:06 CW: I think it was very different. I practised a lot. I don’t really remember practising much when I played the piano. I enjoyed it. I wanted to achieve at it because it made people see me as a person rather than a disabled person who they made presumptions about.
12:21 DB: First I heard about Charlotte when Jonathan Westrup from Drake posted a video clip of Charlotte playing on the teaching music website.
12:29 S?: David Ashworth is a freelance educational consultant who specializes in music and technology.
12:34 David Ashworth: The performance was significant because… Well there were two things. One was it showed someone who obviously had severe disabilities, but who was actually able to overcome those to play a standard piece of repertoire and I’d never seen that before.
12:48 JD: How did it compare in relation to say a traditional cellist?
12:53 DA: Well that’s interesting. If you were to listen just the audio, you would find Charlotte’s performance is wanting. The quality of the sound, the phrasing, the timing that you get with a professional musician playing the real cello, all the expressive qualities is in a league of its own. Then you hear… You hear what Charlotte’s doing and its nowhere near the same level. However when you watch a video clip and see what she’s doing, it then becomes very powerful. It makes you realize that actually music is more about listening. It’s more about the whole contextual thing if you like and not just me, but other commentators who’ve been on the website, seen the clip and left comments, have found its a deeply moving experience hearing someone play a piece of Bach in that way.
13:36 JD: There is an argument that Charlotte’s performance is akin to being given a keyboard with only the right notes on it. How would you react to that?
13:43 DA: That’s an interesting one. In fact there are conventional instruments if you like only have the right notes, but in fact its a bigger thing than that. I think right notes is only part of the picture. We tend to get obsessed with people playing the right notes. The pictures of a note becomes all important, but there’s far more to music than the actual pictures of the notes that you play. And what was so interesting about Charlotte’s performance was that you could see, you could witness, the mental and the physical engagement, and also the musical engagement as well and… Well the spiritual engagement if you like and that was the powerful thing to me. So just to reduce music to a conversation about how you access the right pitches as a note is only part of the picture. You look at that clip of Charlotte and what’s really… The most powerful bit for me is at right at the end when she stops playing, there is a moment’s pause, and then she breaks into a big broad grin. And you know, she knows she’s made something musically significant, that she’s achieved something musically significant there.
15:01 DB: The principle behind the way that we use assistive music technology is almost the opposite to a conventional musical instrument. So with a conventional musical instrument, the instrument itself is fixed and the musician has to master that instrument and has to almost subordinate themselves to the demands of that instrument. Whereas what assistive music technology does is to take a person and their particular interests, their physical needs, and create a musical instrument, a way of playing music which is absolutely right for that person. Not just physically and musically, but also in terms of ensuring that there’s an appropriate challenge.
15:45 JD: Where does the technology end and the skill of the musician begin?
15:51 DB: That’s quite a difficult question to answer. It completely depends upon the individual musician, but I could probably answer that in terms of conventional musical instruments. If you take a piano for example there are all kinds of elements of a piano, which are already assistive. The keys are ordered on the keyboard from low to high. They’re tuned according to a convention, equal temperament. They’re tuned to concert pitch. I dare say that if you went into a music exam having prepared all your piano pieces and the examiner was to tell you, “Oh by the way, today in order to test you a little bit further we’ve rearranged all of the notes on the piano keyboard and retuned it, but if you’re a good pianist then you should be able to handle that.” That gives maybe some kind of an impression. All musical instruments are assistive in some way because they are set up in a certain way. The difference with assistive music technology is that it varies from person-to-person.
16:50 Jonathan Westrup: It’s set up so the sound starts working about there, so that distance. You can change the distance at which it starts actually triggering. You can make it trigger from here onwards, so you can do something quite big or you can do something very small. So as I’m pulling away from the device, [music] and as I move my hand further away, [music] it plays up the scale.
17:13 S?: Jonathan Westrup from Drake Music demonstrated some of the technology they use at St. Rose’s School in Stroud.
17:21 JW: The actual device itself looks like a small red torch and it emits an invisible beam and when you break the beam with any part of your body or whatever, it will trigger sound and you can set up what that sound is. At the moment we’ve got a cello here which we could just play a little bit. I’m just moving my hand now in front of it, [music] so you can hear now that’s the scale. [music] The student’s got a very wide motion. For example, if they can swing their left arm you know that’s a big movement they’ve got, then it could still pick up the sound rather than the small fine motors movements, which other students might want to use in different equipment, but that’s quite good for big movements. It does take as much time to master as any other instrument really. Because then, like you finding, you need to kind of find… [music] Try to find a little riff there. [music] I’m not a master, by any means.
18:19 S?: Aileen [18:20] ____ runs music classes for disabled students in the Norwegian city of Tromso. Their Arctic winters are long and dark. And in January, the city celebrates the end of the polar nights with a large cultural festival. Having seen Charlotte perform, Aileen invited her to compose music for the festival.
18:38 Speaker 7: It’s the darkest period in Tromso when we have no sun. It’s also a way of making life to the city, having a big music festival with musicians coming from all over the world. It’s all kinds of music being performed there. From big symphony orchestras to small jazz ensembles, and rock bands in the evenings. So its a very diverse music festival.
19:03 JD: And can you describe how her compositions were performed?
19:07 S7: Before the performance, it was quite a long project with months of her composing and sending files to Norway, speaking on phone about what we wanted with the music and how it should fit with the dancers. Charlotte was also very clear on… She wanted acoustic instruments. So we had musicians from the symphony orchestra of Tromso to do a recording of her music. [music] The performance at the Northern Lights Music Festival was outdoor in minus 10. [music] This was in the town square of Tromso and it was packed with people around there, and the scene was made up by ice and snow sculptures. And they had proper lighting and dancers dancing to the music. So it was quite magic to hear the music in that setting.
20:24 CW: I really wanted to pursue grades, I wanted to pursue music at college, but unfortunately establishments who grade musicians wouldn’t recognize it. Examining boards wouldn’t recognize it, and therefore, I couldn’t progress.
20:39 JD: Do you understand why they won’t recognize it? Do you think that’s fair?
20:42 CW: They’re very traditional in the way they recognize any examination. And therefore, the way the Drake Music and students play music is very different. And they either need to set up an examination which can be qualified at the same level, which is specifically for music technology of any to accept it. We’re meant to be in an equal society, therefore everyone should be equally graded.
21:07 S?: Charlotte’s achievements were recognized when she received a Bronze Arts award from Trinity College, London. In a statement, Trinity College go on to say, “Although there is no specific campaign to encourage the use of assistive technology, we have taken great interest in Charlotte’s achievement and profiled her story both on our website and in other print materials and press articles. We hope that this has actively encouraged others working with assistive technology, to see how Arts award could work for them.” The music examining boards are consistent in their approach, in as far as they don’t accredit music performed electronically, but as Doug Bott explains, its early days.
21:47 DB: If Charlotte had come to us in 20 years’ time, then I would fully expect that she would have been able to have had her achievements accredited either through the formal school music curriculum or through instrumental exams. Whether that’s through the Associated Board of the Royal Schools of Music or anyone else. At the moment, its very new territory for everybody I think. There are young disabled people who have their achievements accredited in various ways. But one issue, which I think people tend to shy away from talking about and which I’m quite happy to talk about, is that there’s a very big issue around the nature of people’s different disabilities. So differently disabled people access music in different ways and some of those means of access, whether its through Braille music or whether its through British sign language, some of those means of access are perhaps more able to slot in to the existing accreditation frameworks. Other forms of access, for example assistive music technology which is particularly useful for people who face physical barriers to music, these means of access haven’t really been tried and tested yet.
23:07 DB: We’re talking, a fair bit at the moment, to the Associated Board and they’re quite open about the fact that currently they don’t accredit any kind of music produced electronically, let alone the kind of assistive technology that our students are using, but they’re very keen to engage with these kinds of developments. And what we’re currently in the very early stages of discussing with them and also colleagues at Bath Spa University, are ways that you can accredit the quality of a musical performance in such a way that its not necessarily linked to the particular instrument that a person is playing. But what we’re arguing for is something which, to play devil’s advocate, takes it even further and says, “Okay, but what if you were to turn up to a piano exam to play the piano repertoire and you would say actually I’m not going to play on the piano today, I’m gonna to play on a flute.” How would you examine that? Because that really is what we are dealing with. We’re dealing with people who are playing instruments which are unique to them and maybe they’re not even playing repertoire. Maybe they’re playing music which they themselves have created.
24:18 S?: And for music consultant, David Ashworth, Charlotte’s performance could be just the beginning.
24:23 DA: I’ve been working in special schools where I’ve seen young people making music using assistive technology and its always tended to be making music in its own terms and its own style, if you like. A lot of improvisation. And a lot of fairly cutting edge avant-garde sort of sounds, if you like. What makes Charlotte different is she was actually playing crotchet and quavers. She was playing the dots, if you like. She was playing a mainstream piece of music which we normally associate as being accessed by, if you like, a mainstream musician. And that was what was different. She actually had the audacity, if you like, to actually step into their world, and that was what made it so significant I think. Where Charlotte has been important, she’s been a catalyst if you like to get this debate really going, and I’m sure she will see it in that way and feel rightly proud of that achievement.
25:25 S?: Charlotte White chose to pursue her academic studies and gained a place at university studying social policy and criminology. Advancements in the availability and price of software though, means she may soon return to music. And for Doug Bott, that moment can’t come soon enough.
25:41 DB: As a composer, she was very instinctive. She’s extraordinary in terms of the fact that she has a really innate musical ability. I think that any music teacher or music educator who would come across her, whether she was a disabled person or not, would find her to be an outstanding student in terms of the way that she engages with learning, practising, and performing musical instruments. And in terms of the way that she engages with composition and the fact that it really comes from inside her rather than from her understanding of the rules of music.
26:27 CW: Music inspired me in the belief that I could achieve anything and a new belief in myself, which had pretty much gone for the most part, and that belief became sort of lit in every part of my life. It became lit like my physiotherapy and my occupational therapy, and my speech therapy. I became more enthusiastic and had much more of a drive to achieve, which I had slightly lost before then, and I did start achieving in all those areas much more than I had done. And wanting to break the barriers and do the same things as everyone else was rather than thus been bracketed as a disabled person who wouldn’t achieve.
27:12 CW: I’ve got ambition back of what I want to achieve in the future and then complete in the long run. I started to enjoy life as well and have fun, and start experiencing things that the average teenager does.
27:29 S?: Charlotte White’s musical flight was presented by Josie D’Arby and produced in Bristol by Toby Field. All the music in the program was either composed or performed by Charlotte.
Sensory Communication – Sensory Stories
Hello everyone, my name is Joanna Grace and I write sensory stories for children with profound and multiple learning disabilities. I’m currently running a project on Kickstarter to create a set of these stories that families could use – please check it out, we only have a few days left!
Sensory stories have many things to offer children, one of which is the opportunity to develop communication. I’ll explain, but first I should tell you what a sensory story is!
What Are Sensory Stories?
Sensory stories are constructed out of a combination of sensory experiences and text.
I aim to write stories in less than ten sentences. You might think you can’t get much of a story into so little text, but think of how much a poet can convey in a haiku, and think of the adage a ‘A picture speaks a thousand words’ and you’ve a start on imagining what could be in a sensory story.
I seek out rich sensory experiences to put into my stories, these needn’t be expensive things, it’s just a matter of viewing the world creatively and spotting things that would make a good experience. This can get you a few funny looks as you sniff things in shops, or feel them, but it’s a lot of fun. I aim to put at least one experience from each of the five famous senses into a story (did you have seven senses?)
Why sensory stimulation?
Your brain needs sensory input in order to develop and lay down neural pathways. An able bodied child can access a wide range of sensory stimuli for themselves, a child with physical disabilities will need help to access a range of stimuli. Sensory stories are a fun way of providing this support.
Communication Support for Children with Additional Needs
Sensory stories can support communication in children with profound and multiple learning disabilities in a number of ways:
Researchers have found that some of the passivity they observe in individuals with profound and multiple learning disabilities is not down to the disability itself but to a learned helplessness that
leaves the individual disengaged with the world. When you think about it, it is easy to see how, if you couldn’t easily access the world around you, you might begin to see it as not relevant to you and turn inwards seeking stimulation from within. In some cases this can also include self harm as a means of gaining stimulation. By introducing sensory experiences to individuals with profound and multiple learning disabilities you can encourage them to become interested in objects and people. This is a great first step towards communication.
Story telling is a wonderful form of communication that our ancestors enjoyed and that future generations will enjoy. It’s a way we bond ourselves together and form our identities. By sharing a story in a sensory way you can include someone who accesses the world in a purely sensory way in the experience of story telling. Aspects of the process of telling the story also support individuals in learning skills involved in communication, for example the turn taking nature of sharing the story: that I say the words, and then you experience the stimuli, echoes the turn taking nature of conversation: it’s your turn to speak, my turn to listen, then my turn to speak, your time to listen.
People who care for individuals with profound and multiple learning disabilities try hard to personalise that care in a way that the individual would choose for themselves were they able to express themselves. Choices are made on our best discernment of what they individual with profound and multiple learning disabilities would want. Through sharing a sensory story with someone and noting their reactions carefully over time you can learning things like: they prefer the smell of lemons to the smell of roses, they enjoy the bang of a drum more than the ringing of a bell. These small insights can be used to personalise their care in a way that will be meaningful to them, for example by purchasing citrus shower gel rather than a floral one, or by using a drum as an alarm clock rather than a buzzer. Though small these things are immensely valuable to a person’s quality of life.
Supporting Joanna’s Sensory Story Project
I want sensory stories to be available for families to share at home, that’s my motivation for the project. The project ends at 5:22am EDT on May 21st, please have a look before then. In exchange for backing the project you receive a reward of your choosing; there are many things on offer including sensory stories themselves. Come and join us.
To read more about Joanna’s Sensory Story Project and for further information on how to get involved in her Kickstarter project, click here to visit the Sensory Play Tray blog.
Sensory Stories are vital for reaching out to children with additional needs, especially those with communication issues who find it hard to express their understanding of the world around them through speech. Technology has progressed in leaps and bounds over the past decade, and now provides children with communication issues a new and immediate way to express their needs and wants through touch screen interaction, rather than relying on speech.
After you’ve checked out Joanna’s Kickstarter project, why not have a look through our informative posts that cover some fantastic apps to aid communication and our compendium of iPad apps that use augmentative and alternative communication to aid self-expression?
iPad helps American Boy find his Voice
The benefits of iPad apps and technology for those living with disabilities proven again
Despite the iPad being popular with absolutely everybody, we are convinced they help and support learning and communication for people with disabilities. Hunter Harrison is a five year old boy uses his iPad to communicate. Hunter lives with a neuromuscular disability which effects his motor abilities including those needed for verbal communication. Despite this, Hunter is learning to read, knows his numbers, letters, colours and shapes and will be attending mainstream school in September.
Hunter needs a communication system that works. It’s clear he has the facilities to flourish in a mainstream classroom environment. This view is shared by Jane Kleinert from the University of Kentucky who has been working with Hunter. She highlights how popular the iPad has been for use in classrooms, particularly with pupils with autism. The adaptability of the device is one of its most popular features.
Access to AAC Devices Limited, despite iPad affordability
Research in the US has shown that less than 50% of children who require AAC support have access to it. We don’t have statistics for the UK but we’re sure they won’t be significantly different. Access to AAC devices is essential for supporting communication development in children with disabilities. Professor Kleinert and a UK colleague are working together to develop an initiative to build communication systems for children with disabilities. The scheme has allowed Hunter his own iPad loaded up with the popular Proloquo2Go App. The app allowed Hunter to find ways to communicate but over time it has also led to improvement in his oral speech.
Unfortunately in America, the leading funding options won’t supply iPads as they restrict their funds to dedicated instruments designed for communication. The iPad doesn’t fit this category. However, dedicated AAC devices are often heavy and extremely expensive. The iPad of course has many portability and cost advantages and the success Hunter has achieved is something that every child should have access to. This video shows Hunter in action:
Trabasack can be used successfully as a low cost iPad or communication aid mount for more info click here
Communication Aids: Communication Cards
If you have problems with verbal communication, perhaps due to learning difficulties, deafness, cerebral palsy, or stroke, you may already have normal communication aids or methods. But what if the person you’re trying to communicate with doesn’t understand BSL or Makaton, or your Lightwriter‘s batteries are flat? Or you may just have communication problems occasionally, perhaps due to fatigue, or if there’s too much noise.
Communication Cards, from Stickman Communications, are the answer. These sturdy laminated communication aids cover most situations in a non-clinical, light-hearted (but never offensive) way. In the bank, the post office, shops, and a multitude of other situations, Communication Cards will be invaluable.
You start by ordering a Starter Pack, which has a “Thank You” card on a keyring style holder. Then you add whatever other cards are going to be helpful for you. Your selection will come as a set on the keyring.
There is a wide selection of Communication Cards available, including one for writing your own message and one for your personal data. Some are specific to certain conditions – for instance one has a brief description of Hypermobility Syndrome – but most of them could be used by any of us.
Each card is 11cm by 7.8cm, and your set will come with stickers to put on the cards, so you can easily find the one you need. They can slip into a bag or handbag, or even into your pocket, or clip onto a wheelchair using a carabiner clip.
Communication Cards have only been available for a short time, but as this tweet shows, their popularity is growing fast by word of mouth.
New Communication Card designs are coming out all the time, so keep an eye on the website to see what’s new! These innovative and attractive communication aids are great fun, and can be a lifesaver in an emergency. A highly recommended product.
Honduran Electronics-Whizz Creates Homemade Eye-Tracking Computer Interface
Honduran teenager Luis Cruz has used his electronics and programming know-how to create a new homemade eyeball tracker. The device allows users with motor disabilities to enter text into their computer with eye movements as opposed to keystrokes. The device, known as the Eyeboard system, is not a new concept but Cruz has taken things a step further, he’s managed to create a pair of spectacles including his technology for an affordable price (less than £200). The hope is that this homemade eyetracker will mean easier communication will become affordable in developing countries and areas where those with such needs may have no means of communication currently.
A hands-free eye-tracking controlled computer can truly revolutionise the lives of people with specific motor disabilities. It can be the easiest and most effective aid to communication for these individuals and Cruz’ technology is further widening the access to communication aids. Up until this point, eyeball tracking computer interfaces have been too expensive for most, retailing at over £6,000. If Cruz’ can get this new development made as cheaply for others it is really going to help people who need eye-tracking equipment around the world.
Over the last twelve months Cruz has been refining and perfecting the Eyeboard system. His system uses some very specific scientific and electronics formulae to result in the basic eye-ball tracking computer interface. Cruz’ system is extremely basic, hence its cheap cost but it allows for letters to be input via eye movement rather than typed in which is a big achievement for a very affordable software system. Cruz developed both the hardware device and the software system needed to turn the eye movements into letters and therefore communication.
Open Source Eye Gaze Technology
The Eyeboard system is a very new development and not yet widely available. Despite this, Cruz is confident he can produce the hardware cheaply, with his prototype spectacles costing under £200. He’s also decided to release his software as open source to speed up development of tools to further speed up users’ communication. Cruz’ development is groundbreaking and is something that can hopefully be rolled out to significantly improve the communication and daily lives of people across the world.
This video further explains Cruz’ homemade eyetracker device and how beneficial it can be for the future of communication:
Barriers to Communication – Part II
We recently posted the first part of our friend and customer Markinsutton‘s recent blog post discussing the barriers to communication he has faced and now we’re back with the second and final part. We left the final part where Mark had talked us through the difficulties he has faced with spoken and written language…
“With just touching on those two topics of communication I want to highlight a few more barriers. Some are linked to what I have just written so sorry if I repeat myself. As I have said I have a hearing loss and this presents a problem. People can’t see deafness or the understanding just how confusing it is for me and others to have to try and process the sounds we have heard into a sentence, and then translate that into a reply. Even those who know me best and have a great understanding of deafness I found to be the worse to construct sentences that I will be able to understand at the correct pitch, volume and tone. Putting too much into a sentence leaves me confused and having to ask again as I am still trying to process the first part of the speech before being able to process the second part. It’s not that I haven’t heard them just I cannot concentrate that long to take in all the information, like I have said speech is a complex language structure and having the ability to understand that when you have a hearing loss just makes it so much harder. There are many factors that can affect this. The environment is the main one for me. This is the case for most people with a hearing loss or not. Try and listen to a conversation when you have a lot of background noise or lots going on around you, It’s very difficult.
This brings me onto a form of communication I have found to be fairly affective for me but presents so many barriers it not as good as it could be. That is the ability to use sign language. Sign Language is very expressive and personally I feel has a much simpler grammar structure to it than spoken or written language. The barriers become known when there is no one who can sign around you. The ability to form the hand shapes for you to form the complex signs. My motor skills are very poor I prefer to watch sign language more than sign myself as it gives me a much simpler view to what has been said to me. There is also the normal barriers of having the ability to see the person also understanding their own ability to sign. Unless you get a professional interpreter sometimes it’s very hard to follow someone who is using sign language as mistakes are common. The other part of using sign language over other forms of communication is the heighten awareness of gesture and facial expression.
Body language is one of the most true forms of communication I find as people say so much with their bodies and don’t even realize it. This presents a whole new barrier as it is very confusing to see someone say one thing and then say a different thing with their body. People often lie with what they say but find it very hard to lie with their body and facial expressions give it away. I use this a lot but it leaves me feeling confused and isolated as I don’t know if what I have heard is what the person is saying are the same thing. 90% of my work is working with people who have little or no verbal speech and little or no hearing. Not having the ability to understand grammar and English they us gesture and facial expressions to communicate their needs and wants. I have found my best conversations have been with these people who use this form of communication that demonstrates to me the more complex you make communication the less effective it becomes..
Mark makes some fantastic comments and we particularly want to reiterate his concluding comment “the more complex you make communication the less effective it becomes” and this why, at Trabasack, we are committed to supporting and advocating accessible technology, design for all concepts and we thank Mark for allowing us to share his post.
The Barriers to Communication – Part 1
with Thanks to Markinsutton
At Trabasack we are keen to always be at the forefront of developments and new technology in assistive communication technology and communication aids and we also value the opinions of those who experience difficulty and overcome the problem of communication due a range of differences and conditions.
Markinsutton is a great friend of ours and also a Trabasaxon so when we read his latest blog post discussing the barriers of communication, we felt it was important to share it on this blog for a wider audience:
“Someone recently asked me what are the barriers to communication? Well I going to knock myself out and tell you just what barriers I face and how they affect me on a personal level. I may also touch on other barriers that don’t affect me but I can see causing a problem for those I work with.
Communication has always been my biggest barrier in life and one that I have struggled to overcome since a little boy with no speech. Growing up I found that speech is only one part of the barrier and really hasn’t been the hardest to overcome. Most of what we say is total rubbish anyway and I have communicated better with people around me without the use of speech. Before I move on to methods I use as my communication I thought it would be good to touch onto the barriers with speech.
Speech and the spoken language!
The real problem with speech is the speed it works at, there is no delay or time to correct what you have said. Once you have opened your mouth and started to speak a word, you have already expressed so much information. Someone like me who has a problem with speech this becomes even more difficult. Take a simple word that most would open a dialog with another person, “hello” first barrier for me is remembering to swallow so I don’t end up choking on my own saliva when I open my mouth, worse still end up dribbling what saliva down the front of me that will portray a whole different message to the person I am saying hello to. The next barrier is just how I say the word. Tone, pitch and volume are all concepts that having a hearing loss are alien to me. Most people say that I have a London accent but understanding accents and how people talk is another barrier I do not understand. When do you say “Hello” and why, does the person really want to make conversation with me and if so why? Should I reply with a hello back, what do I say next? Should I ask “how are you?” you get the picture. The spoken language has a whole set of rules that are very different depending on who you are with, where and when. I could write a whole book on the barriers that I face on speech alone but I am sure there are 100 of books out there on this topic. All I know is sometimes it’s really too much effort and is hard and complex form of communication to manage within the spilt second you open your mouth.
Written language, there are many forms of written language and I am aware that I have not touch on many other barriers of communication before talking about this subject. The reason why I have jumped from speech to written is because it’s the most common two forms of communication that people understand but is far the most common two used. For example the biggest use of communication I use is silence. The amount of times I have done nothing to portray a message across is much more than any other form of communication I use and is much more effective than trying something else. The biggest barrier to me for me and most people with the written language is spelling and grammar. Just how do we construct a sentence? What words do we use? How do we put them together? There is also the other greatest barrier with the written language that is the ability and time to read it. If you have got this far within reading this passage on communication you are doing well. I am one who likes to write as I find it gives me time to express my ideas and thoughts onto paper. I also feel it can be the most effective form of communication. You only have to ask William Shakespeare that!
Another barrier with written text is speed of trying to turn it into spoken word. In my experience this has never worked. AAC devices are great for expressing your needs and wants but that is pretty much about all. Having a conversation via an AAC device is next to impossible to do. The speed which one can input text and translate that to speech is far too slow. This is something I have noticed being chairman of a charity that supports children with AAC devices is becoming easier with new technology but still has a long way to go before it can replace speech. There is also the biggest barrier with the written form of communication that is the ability to read it. There are so many people today that are unable to read this is why most of my blogs and emails I send in audio format as well. The age of texting (SMS) messages has made this worse in my view as people have tried to cram in too much within a text message and information gets lost along the way. Text messages have opened up a whole new world allowing us to communicate on a much more equal level but presents a whole new set of rules and barriers within its own way.
TO BE CONTINUED
Drop by to read the next part of Mark’s story.