Lost Voice Guy
Lee Ridley, known as ‘Lost Voice Guy’, is the first comedian to win Britain’s Got Talent… and also the first communication aid user to win! Lost Voice Guy may not “speak”, but he certainly has a voice – sharing his experiences of cerebral palsy and communication aid use in his comedy, and discussing the representation of disabled people in the media.
This may be one of the first times you’ve seen a communication aid used by someone in the public eye – apart from Stephen Hawking. Lee Ridley’s BBC Radio 4 sitcom ‘Ability’ amusingly shows just how frequently he hears that comparison, as people’s only cultural reference point for someone who uses a communication aid. You might therefore be surprised that around one in two hundred people use some form of aid to help them communicate (also called “augmentative and alternative communication”, or AAC) (Blackstone 1990). Lee Ridley, and American sitcom “Speechless”, may be the first tentative steps towards more accurate media representation.
Apart from Lost Voice Guy who needs a communication aid, and why?
Communication aids, or AAC, are used by children and adults who have difficulty using spoken language (and sometimes with understanding language too) for a wide range of reasons. Some will have needed additional methods of communication from childhood, such as those with cerebral palsy, autism, or many other developmental or learning disabilities. Others may need to use additional methods to communicate following a brain injury, stroke, cancer, or a neurological disease such as Motor Neurone Disease. These are just some of the causes of communication difficulties, and having one of these diagnoses does not mean that person will definitely require a communication aid.
The potential power of a communication aid is immense:
“My aid has enabled me to live independently in my own home, employ my own care staff, set up my own business (self-employed), earn enough to come off means-tested benefits, earn enough to buy my next new AAC device soon.”
Scope’s “No voice, no choice” Communication Aids Survey respondent, 2007
Always so technologically advanced?
Not at all… AAC, or communication aids, are anything ‘extra’ that helps communication.
We don’t just communicate using spoken words. Watch just a few of Lost Voice Guy’s videos and you’ll see a wealth of facial expressions, gestures, not to mention comic timing. All this would be lost if you were just listening to the voice synthesiser only. Communication aids are frequently used alongside speech, gestures or signing. Speech and Language Therapists sometimes refer to this as ‘total communication’, supporting the person to use a wide range of communication methods to get their message across in the best way possible for the person and situation. In the BGT final, Lost Voice Guy made a joke out of how cumbersome communication aid use can be, by typing a response ‘good’ to David Walliams over the course of a comic 20 seconds (complete with ‘thinking’ pause and gesture). Sometimes a simple ‘thumbs up’ is all that’s needed to get the message across!
A communication aid may consist of:
- a gesture or signing system (such as Makaton or BSL, see our article for more info this area)
- a symbol or picture-based system, mounted on a board, or in a book
- alphabet or word boards or books
- typing based systems (such as the Lightwriter system used by Lee Ridley)
- A mix of some or all of the above!
Communication aids can be controlled by pointing, using a keyboard or switches, or even small head or eye movements. A person’s literacy skills and physical skills will be taken into account when considering what methods of communication will work best for them.
This clip shows the teens from sitcom “Speechless” demo-ing two different types (pointing with a headlight to a word board for someone to read vs. a computer system operated by eye movements), and discussing some of the pros and cons of different communication aids.
As personal as any method of communication
The way we talk is highly individual – from our accent and tone of voice, to the words, phrases and expressions we commonly use. A communication aid should be as personal as this – an adult communication aid user will need a very different vocabulary to a child so they can join in with social chit-chat (“Kanye West” being a crucial omission from Lee Ridley’s http://lostvoiceguy.com/radioshowreel/), before you consider the specialised vocabulary an adult communication aid user might need in the workplace.
An accent is also a highly personal thing, Stephen Hawking was reluctant to change his when technological advances made it possible, saying “It has become my trademark and I wouldn’t change it for a more natural voice with a British accent.” However, Lee Ridley is not as attached to his, saying he’s going to spend some of his winnings on a Geordie accent for his communication aid so he doesn’t sound like ‘a posh version of Robocop’.
If this blog has inspired you to find out more about AAC, you could start by reading some of the personal experiences of using AAC here: http://www.everyonecommunicates.org/stories/individualstories.html
But let’s leave the last word to Lost Voice Guy. Whilst this article celebrates the empowering nature of communication aids, the communication aid is not the star of this story, it’s Lee Ridley and his hilarious comedy:
“When I am performing, it’s as if I have finally found my voice – and it’s a great feeling making people laugh.”
Written by Alys Mathers, Speech and Language Therapist
Will using sign language impact my children’s ability to learn words?
12 YouTube videos for teaching speech, language and communications skills
Does my child have a speech or language issue?
Strokes can have devastating effects on someone’s life in various ways; it can change your body, your personality, put huge pressure on relationships and there can be a financial impact. You may need financial help. A stroke might prevent someone from returning back to work or for someone to require carer assistance which comes at a financial cost. At a time where the shock of your world having been turned upside down it’s hard to know who to ask for advice or help and what you’re entitled to.
In this article I will cover a few main benefits, however charities such as the Stroke Association have well advised volunteers who can help you identify what you might be able to apply for or you can contact your local social services for help.
Financial help – Housing benefits
If you are on a low income you may be eligible for financial help with paying all or part of your rent. Housing benefits will be gradually replaced by Universal Credit, so if you make a claim through Universal Credit, any financial help you would receive will come through the Housing Element of Universal Credit. The amount of Housing Benefit you may receive also depends on your personal and financial circumstances.
What is covered?
- If you rent a property or room from a private landlord, your maximum Housing Benefit will be calculated with the Local Housing Allowance rules.
- If you live in council accommodation or other social housing, the most Housing Benefit you can normally get is the same as your ‘eligible’ rent
Eligible rent includes:
- rent for the accommodation
- Charges for some services, such as lifts, communal laundry facilities or play areas.
Even if it’s included in your rent, you won’t get any Housing Benefit for:
- water charges
- charges for heating, hot water, lighting, or cooking
- payments for food or fuel in board and lodgings or hostels
How do I claim?
- If you are not working then you can claim housing benefit with employment and support allowance, income support or Jobseekers Allowance, call Jobcentre Plus on 0800 055 6688.
- If you are claiming pension credit then you can claim housing benefit with this. Call the Pension Service on 0800 991 234.
- If you are not claiming any of the above than you can get a form for Housing Benefit and Council Tax Support from your local council.
Financial help – NHS Low Income Scheme
If you’re on a low income, this scheme could help you pay for all or some of your health costs. The amount you receive will depend on your household income and outgoings. The help you are entitled to is also available to your partner.
You could get financial help towards:
- NHS prescriptions
- NHS dental treatment
- sight tests, glasses and contact lenses
- necessary costs of travel to receive NHS treatment
Who can apply: http://www.nhsbsa.nhs.uk/HealthCosts/1136.aspx
How to apply: http://www.nhsbsa.nhs.uk/HealthCosts/1128.aspx
Financial help – Personal Independence Payment (PIP)
What is it? If you need extra help because of an illness, disability or mental health condition you could get Personal Independence Payment (PIP)
To be eligible for a PIP, you must be:
- be aged 16 to 64
- need help with everyday tasks or getting around
- have needed this help for 3 months and expect it to need it for another 9 months
- usually be living in England, Wales or Scotland when you apply
- have lived in England, Wales or Scotland for at least 2 years
There are exceptions to these rules if you’re terminally ill or in the armed forces
Click here for further details: https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/help-with-your-pip-claim/how-to-claim/
Financial help – Council Tax Reduction
Council Tax Support (or Reduction) is a local discount on your Council Tax bill. Every council in England has a local scheme for reducing the Council Tax paid by people on low incomes. The amount of help you’ll receive will depend on which part of the country you live in as each scheme is set locally.
How do I apply? Contact your local council for an application form.
These are just a handful of benefits or financial reductions you may be entitled to. Use the links below to help you investigate further.
Benefit Calculator: https://www.gov.uk/benefits-calculators
Government UK: https://www.gov.uk/
Citizen’s advice: https://www.citizensadvice.org.uk/
Stroke Association: https://www.stroke.org.uk/
Written by Rachel Dines, Speech and Language Therapist
What is mental capacity? The severity of a stroke can be life changing, to the extent that the person you love can no longer have the ability to make decisions about their life and what’s best for them; this can be as simple as staying in a hospital to recover or larger decisions such as stopping treatment.
What is Mental Capacity?
Mental capacity means you have the ability to make your own decisions. This means you are able to understand and think through information given to you and then you make your decision and choice based on this information.
All of us struggle to make certain decisions in life, especially those we haven’t had previous experience of. However struggling or being indecisive is not the same as not having the capacity.
The Mental Capacity Act 2005 is designed to protect individuals and support those who may lack the mental capacity to make decisions about their care, treatment, placement and any other decision they entail.
- Someone’s lack of mental capacity can be temporary for example due to infection or initial brain injury. For others, lacking capacity can be permanent.
- The assessment of someone’s capacity is decision specific; therefore every decision which needs to be made requires a separate assessment. Just because someone cannot make a decision about their complex financial affairs does not mean they are unable to decide what they would like to eat or drink.
How does someone’s capacity get assessed?
Within the context of the healthcare service, someone’s capacity can be assessed by a doctor, a healthcare professional or a social worker. If someone has a communication difficulty due to a brain injury then a speech and language therapist will advise and facilitate an assessment to ensure that the information is given to the individual in the most accessible way. This can be through pictures, simple single words or simple yes/no questions. The assessment must be made as patient centred and accessible as a possible to ensure the person is given every opportunity to understand the information and the decision being made.
There are 4 stages to assessing someone’s capacity for each individual decision, and the individual must demonstrate that are able to carry out each stage.
- An individual must understand the information given to them.
- An individual must retain that information, there and then in the assessment
- An individual must be able to weigh up the information and what the choices are in relation to that decision
- An individual must be able to communicate their decision to the assessor. This can be in any form of communication.
What happens if someone hasn’t got capacity?
If someone hasn’t got the capacity to make the decision in question then a decision will be made in their ‘best interest’. In order for the decision to be in someone’s best interest the individuals wants will be taken into consideration, along with the information from people who know them best and who would know the individuals wishes. If the decision is medical, then the decision maker tends to be a doctor.
How to prepare for the future
Anyone can plan for the future and ensure their wishes are known or hand over the responsibility of making decisions to another person they trust. This can be achieved in various ways:
Important things to remember:
- Everyone is deemed to have the capacity until proven otherwise
- Capacity is decision specific
Written by Rachel Dines, Speech and Language Therapist
Dementia and challenging behaviour
We need to look at new ways to support communication for dementia as it is the key to unlocking the person from the prison of challenging behaviour
Ronny was a fighter pilot in the war. During that time, he was well known for his bravery in the face of seemingly insurmountable odds. When he came back from the war, he went on to own his own garage and repair cars in his home town. He married Martha and they settled down and had two children, Jamie and Sarah. When he retired he and Martha wanted to spend some time traveling around Britain seeing old friends from the war and indulging his passion for steam locomotives. He loved nothing more than to go to the model railway club and help to strip down old engines and rebuild them so they were running smoothly. Life was sweet.
Then one day when he was 72, unexpectedly he found Martha on the floor of their kitchen when he came home. She had had a heart attack and had died suddenly. For Ronny, on this day his whole world was gradually turned upside down. His gentle, quiet, loving Martha was gone forever.
In hindsight although it seemed that Martha was the one that was dependent on Ronny, in truth it was the other way around. Martha was the thread holding Ronny together, and without her his life, independence and memory began to unravel. He had been having memory problems for a few years, and now without Martha to remind him what to do and in a storm of blinding grief, Ronny found himself barely able to cope.
Then he had a fall and fractured his hip. In hospital, he was confused and delirious, frequently lashing out at people who came near. He refused to do any rehabilitation for his hip and so walking became extremely difficult. In the end, he was placed in a nursing home where he continued to be defensive to most attempts to help him. He didn’t know what day it was, and found it extremely difficult to express himself.
Very slowly, with help and some medication, his depression started to improve. However, the dementia continued to make his communication and thinking difficult leading to significant frustration when other people didn’t understand what he wanted. The staff in the nursing home would often say “Ronny’s being challenging again” when he lashed out at them.
One day, one of the carers asked the visiting Speech and Language therapist if she would be able to see Ronny and help, she agreed. After an assessment and working with his children to find pictures and photos from his life, the Speech and Language therapist was able to help. She was responsible for programming a tablet for Ronny to use, which could help him remember important people and events as well as orient him to the here and now.
Technology to help
There was an app to help him remember and reminisce over his past achievements and passions as well as his family. In here there were lots of scanned photos of the planes he used to fly, his comrades and his medals. There were also lots of photos of when he and Martha were younger and holidays with their children. Each of the photos had a little description with it to help Ronny remember the details as well as explain it to others. Ronny spent hours looking through these photos and descriptions, reliving his past. The LifeTimesTALK app or My house of memories app (from www.liverpoolmuseums.org.uk) are two lovely options for this.
Then there was an app to help him communicate with other people his choices for his mealtimes, favourite TV programmes and other day to day activities. The MyChoicePad app or Choices to go app are two great options for this.
Finally, there was an app with a diary and day to day planning so he wouldn’t forget things that were important to him. It had the time in a big clock as well so he could keep himself oriented. He was so thrilled to get an invitation to attend the model railway club annual dinner and kept on looking that up to make sure he wouldn’t miss out on going! The Can plan is a great app for this.
The staff at the nursing home noted an immediate change in Ronny. He was more talkative engaged and the challenging behaviour was mostly behind him. “It’s like he was a prisoner in his mind and now he is free” one said. Other residents also could be found talking to him about things they were all interested in – model railway engines, aircraft, their experiences during the war. The tablet has given him new outlets to communicate which has helped him enormously to get back some of the quality of life that he had lost with his dementia and depression.
By Kim Clarke, Speech and Language Therapist MRCSLT, MSPA, MASLTIP.
For a list of recommended dementia apps download the PDF
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Julie was always the mother, home-maker and the organiser. With 3 teenage children including a son with a developmental disability, she already led a very busy life. Julie was used to looking after her son Ryan, taking him to medical or therapy appointments and getting him to and from school in his wheelchair. That was until her husband, Simon, an adept and hard-working businessman, had a large stroke. After the stroke, Simon had a severe right-sided weakness and an acquired communication difficulty. He was 40 years old.
“The day Simon had the stroke, my world turned upside down. He was always the one who earned the money in the household and paid all the bills. I was always the one who looked after the kids, did the shopping, kept the house in order and made the meals for everyone. I was also the kids taxi service. But now I feel that I have to do everything, absolutely everything! We are so lucky that Simon had illness and disability insurance, but it was about 6 weeks before this started so we had to live on our savings for a while. I don’t know how I would have coped if it hadn’t been for the help and support of family and friends during those dark days”.
Switching roles with stroke – Carer in two senses
Julie, without realising it had extended her role as carer beyond her child to her husband as well. The emotional impact of this role change cannot be underestimated. The main emotional support she used to leaning on was not only gone, but now needed significant support himself. The changing dynamic from equal partner to carer changes the power dynamic in a relationship from emotional, financial, practical and sexual perspectives. This can place a partner like Julie under extreme stress and can, understandably, lead to anxiety and depression. Research indicates that carer stress is a significant burden in general in modern society leading to an increasing burden on mental health services.
Often the systems that are put in place to support the partners of people with disabilities to cope are critical to supporting the person with a stroke with the whole of their rehabilitation process. Overly stressed carers find it very difficult to support the person with a stroke to take achieve their independence. Some partners have more internal resources, experience and skills than others. For Julie, her experiences supporting her disabled son proved highly useful in supporting the rehabilitation of her partner, Simon. She often underestimated her role and found it difficult to see how amazingly resilient she was. Each carer and each situation is different and the package of support required needs to be carefully considered in an individually sensitive way.
Therapists often have expectations that family members will support therapeutic goals for the person with a stroke with daily practice of their goals. However, for Julie, who is so very time poor, unless the goals are embedded in everyday life there would be no chance of her supporting her husband to achieve them. The importance of an effective multidisciplinary team and particularly social work support to engage a range of social care services to enable her to manage her time effectively cannot be underestimated. Formal and informal respite care, to enable Julie to have guilt-free time for herself on occasion was also essential for her longer-term mental health and well-being.
Over time as Simon with the help of Physiotherapy and Occupational Therapy became more physically independent in his self-care and mobility, so the potential burden for Julie had begun to lift. However, despite this often carers can become locked into the safety and security of their coping systems. It can be that they do not see where or when they can step back a little and allow their partner to try to resume activities that their partner once used to do independently. This is most obvious for physical activities but can also be true for communication tasks such as answering the door or the phone, doing the family finances, or doing online ordering of groceries. For Julie, her dawning awareness of where she could encourage communication independence was a revelation.
“I’ve been doing the online banking to pay the bills ever since Simon had his stroke. Only the other day I noticed Simon looking over my shoulder at what I was doing, when I realised he wanted to try and do it himself but had totally lost confidence. I was in a hurry and thought to myself I don’t have time to do this with him now. But instead of just ignoring it, I asked him if he wanted to try to do the banking again, another day, with my support. He jumped at the opportunity. Afterwards I realised that if I supported him to do this for first few times by giving it some extra time, then potentially he could do it independently and this would free me up to do other things. It also would be great for his self-esteem. So, I was very pleased with myself for talking about it the way I did with him”.
A few years later, Julie and Simon were coping well. Simon continued to be motivated to do his rehabilitation and was doing more and more activities independently.
“I used to do the grocery shopping at the local supermarket but now Simon does all of our grocery shopping online. This has saved me about 4 hours a week and I am so pleased that I do not have to go through the checkout anymore with an overflowing shopping trolley! We’ve settled into a routine with it and it works really well .. Simon is now working to get his driver’s licence back and if that is ok then we will get his car adapted so he can get himself to his medical and therapy appointments independently.”
Their life is moving forward in a smooth, albeit fundamentally different manner with the roles switching again but this time more positively with Simon doing more domestic tasks himself. The power dynamic in the relationship between the couple looks to continue to be on a much more even keel.
For more support and information try out our free stroke recovery speech and language course put together by our Iris Experts Team www.irisspeaks.com/stroke
By Kim Clarke, Speech and Language Therapist MRCSLT, MSPA, MASLTIP.
What is aphasia?
Communication difficulties are common after having a stroke with approximately 1/3 of people experiencing problems1. Difficulties can affect speech production and clarity, known as dysarthria or dyspraxia or the understanding and construction of both spoken or written language, known as aphasia.
Communication is an essential part of everyday life but can be more time consuming and frustrating for the person with a communication difficulty. However, improvement is possible for many people who have communication difficulties, with daily practice of their treatment goals over time. Of particular benefit are using communication strategies that are an integral part day to day activities in the person’s life. While it may be easier for the person to communicate with the people they are closest to, it is also very important for them to continue trying to communicate with other people in their life in support of their independence.
Practical things the family can do to help at home
The following are examples of activities that can assist the person with communication difficulties by giving them the opportunity to practice their verbal communication skills in their everyday life.
- Answering the door – welcoming visitors to the house or telling cold callers that they are not needed.
- Buying the paper at the local shop – having a simple conversation with the store keeper is a good way to practice the person’s communication goals.
- Reading out recipe ingredients and methods to the cook of the house.
- Answering the mobile phone to known people.
- Talking about photo’s or articles that friends post on social media sites such as Facebook can also be an excellent source of stimulation.
- Sending emails to friends or colleagues
- Paying bills online, reading the instructions and filling in the pages..
- Videoconferencing with friends or family members who are a long way away with Skype or something similar.
- Making small talk with acquaintances they know from social groups such as at church, a sports club or at the pub.
People with communication difficulties often are afraid of how these conversational attempts will work for them, which is understandable. Communicating in social circumstances can be intimidating and overwhelming. However, distant friends and acquaintances too can be afraid of having a conversation because they want to help, but don’t know how to.
When things go wrong post stroke
Unfortunately, misguided attempts to help can lead to communication breakdown, and leave the person with the communication difficulty feeling more frustrated and isolated. However, there is a lot that can be done by the person with communication difficulties, their family members and significant others in educating others in how best to communicate to people with communication difficulties.
This information can be very helpful in creating and supporting “communication friendly” communities, which in turn, encourages more people with communication difficulties to feel more comfortable to practice their skills more.
Give these tips to close friends and family members
The following are some examples of things that a family member or close friend can explain and “demystify” for people who don’t know what to do:
- Speak at a normal speed, not too fast, not too slow
- Do not talk over the person, address questions or comments directly to them.
- Be patient and allow the person plenty of time to respond – it may take them longer to process the information and work out their response.
- Don’t interrupt the person as it can break the pattern of communication.
- Use short clear sentences – give one piece of information at a time.
- If the person with communication difficulties has difficulty finding the right word or finishing a sentence, ask them to explain it in a different way. Listen and watch for clues like pointing or writing. Also, pay attention to their body language as they may be gesturing what they are saying. Try not to say the words that you think they might be wanting to say for them.
- Try to communicate with the person in a conversational way, not question after question (because then it can feel like an interrogation).
- Use maps, calendars and photos (e.g. family members) to show what you are talking about and encourage the person to communicate in any way he/she can.
- Have paper and pen available and write down relevant words.
- If you don’t understand what the person with communication difficulties is saying, then ask them to clarify distant friends and acquaintances and rephrase what you thought they said if necessary. Also, encourage the person to let you know when they have not understood you.
- Try to laugh together about misunderstandings and mistakes – it can help. Humour can help to bring you closer together, and may relieve the pressure. However, be sensitive to the person and don’t laugh at them.
Download the tips so you can email around the family.
Click Here to Download PDF
Creating and supporting opportunities for people with communication difficulties to communicate effectively in an environment is extremely important for their self-esteem, social interaction and to support their mood. Increasing awareness in the community about “what to do” to support people with communication difficulties is a fundamentally important action that can have a lasting and supportive impact on people with communication difficulties both now and in the future.
If you’re interested in finding out more check out our free tailored 10 part inbox speech and language therapy courses. Designed by our Iris Speaks Experts to help your family on their speech and language journey. Sign up here!
1 National Clinical Guidelines for Stroke (2016) Royal College of Physicians Intercollegiate Stroke Working Party. http://guideline.ssnap.org/2016StrokeGuideline/index.html
Written by Kim Clarke, Speech and Language Therapist