“Filming My Father: In Life and Death”

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On February 1st 2017, UCLU Giving Voice held a documentary screening of20170201_172127Filming My Father: In Life and Death“, an award-winning documentary providing an insight into one family’s battle with Motor Neurone Disease (MND).

MND is a progressive neurodegenerative disorder that prevents the motor neurones in the body from working properly. The MND Association reveal that up to 5,000 people in the UK are living with MND at any one time, and it kills more than half within 2 years of diagnosis.

Your motor neurones send messages to your muscles and are therefore involved in day-to-day activities without us even thinking about it, such as eating and breathing. Whilst the effects vary from person to person, MND leads to weakness and wasting of muscles, causing loss of mobility in arms and legs, and difficulties with speech, swallowing and breathing.

The evening opened with a talk from Steven Bloch, a senior lecturer at UCL, who discussed the role of a Speech and Language Therapist working with people with MND. 

Speech and Language Therapists are key in providing support and intervention surrounding progressive swallowing and speech difficulties with MND. They work on maximising existing speech abilities as well as preparing for the future by encouraging legacy work and the potential for recording a client’s voice for use of alternative electronic means of communication. They also assist the client’s support network with their communication and interaction with their loved one.

As seen in this documentary, people with MND will likely require an Alternative Augmentative Communication system, such as an iPad or an eye-tracking device, to communicate when they are no longer able to produce verbal output. The Speech and Language Therapist would be required to advise around this topic, as well as train clients and families how to communicate with this new equipment.

As the muscles in the mouth and throat weaken, the Speech and Language Therapist will also be required for swallowing assessment and review. They will monitor the client’s ability to swallow and will make recommendations on their diet. This may mean having softer, pureed food, or could eventually mean advising that a tube is inserted directly to the stomach so that the client can be fed via a percutaneous endoscopic gastrostomy (PEG) tube, eliminating the risk of any food or fluid entering the lungs due to a weak swallow.

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Fraser sporting a Giving Voice t-shirt with our Vice President, Sophie, and Social Secretary, Mahie.

We were lucky enough to have Fraser present on the evening to answer some questions after people had watched the documentary. Fraser created the majority of the content for the documentary by filming his father’s journey with MND over the years, and was able to provide us with amazingly honest and insightful answers to the many questions asked.

Overall, the event was a great success. The Motor Neurone Disease Association were kind enough to provide us with lots of resources for the event, and we provided every audience member with information sheets about MND, as well as popcorn and a bag of sweets.

From ticket sales and donations, UCLU Giving Voice raised £200 for the Motor Neurone Disease Association (MNDA). 44 people attended, 28 of which were UCLU Giving Voice Society members, but also staff, speech and language therapy students, students from other courses and friends showed up to support this event. 
20170201_191159The event was successful at not only providing people with the opportunity to see this amazing documentary, but also providing them with the unique opportunity to discuss their immediate thoughts, feelings and questions about the battle with MND with Fraser, and we received some great feedback.

“It made me feel appreciative of my family and how lucky we are. I learned about the impact that degenerative diseases can have on other family relationships and how it can push people apart at the same time as bringing them together”

“I was very moved by the film, it made me really think about life and death and what really matters. It was quite painful to watch but I’m definitely glad I did. I didn’t really know much about MND before so it taught me about the disease and its progression. It gave me an insight into what it’s like to have MND but also how difficult it must be to see a family member suffering.”

“It highlighted the impact of the role of the family in the care of a loved one. A patient shouldn’t just be seen as a patient, supporting the family in the how to communicate with the patient is equally as important”

– Feedback from the event

Many thanks to Fraser for being part of the event, and to everyone who attended and donated. Based on information provided by MNDA, here is what your £200 could be going towards:

  • 20 information packs for newly diagnosed people with MND
  • 6 adapted cutlery sets to help someone with MND continue to feed themselves
  • Funding an MND researcher for just over a day
  • Running the MND Connect support information line for 2 hours
  • Funding laboratory equipment for 4 day’s vital research into finding out the causes of MND
  • Producing 40 copies of ‘So what is MND anyway?’, a guide for young people affected by MND

Click here to see some of the highlights from Fraser’s Q&A session, after showing the documentary.

For the most recent updates following the filming of ‘Filming My Father: In Life and Death’, like the Facebook page.

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UCLU Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

Email: ucl.givingvoice@gmail.com

Documentary trailer:

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UCLU Giving Voice Annual AAC Treasure Hunt 2016

October is International AAC (Augmentative and Alternative Communication) Awareness Month and what better way to raise awareness of AAC that by getting people to experience it first-hand!

Some Key Facts on AAC:

  • It is used as a way to replace speech or to support speech in individuals with communication difficulties.
  •  AAC can also be used to help these individuals to understand what others are saying.
  • There are lots of different types of AAC. Signing, eye gaze, alphabet charts, ipad apps and voice output systems are all forms of AAC.
  • If you’ve ever given someone a “thumbs up” or waved goodbye, you’ve used AAC!
  • AAC is used by people of all ages. It is mainly used by people with Parkinson’s, Motor Neurone Disease, dementia, Alzheimers, Autism Spectrum Disorders, Learning Difficulties, and Cerebral Palsy.
  •  Approximately 652,000 people in the UK benefit from using AAC (Scope, 2008)
  • You can find more information here: http://www.communicationmatters.org.uk/page/what-is- aac

Last year UCLU Giving Voice held a successful AAC Treasure Hunt and we have decided to make this an annual event. With committee members scattered around the Bloomsbury area, armed with low tech AAC devices, challenges and clues, the participants had to race to the finish line to win prizes.

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Teams meeting in the UCL Quad, getting ready to set off on the hunt. 

To start off the event, tokens were hidden around the UCL Main Campus and the team who could find the most had a head start in their journey to the first location. Committee members were easily identifiable around the area with ‘ASK ME’ signs and big glowing pink balloons.

We were surprised by the number of people not taking part in the event who stopped and asked us about what we were doing. This was a great opportunity to explain what Giving Voice was, what this event was aiming to do and where they can find out more information. None of the general public had heard of Giving Voice or AAC before, and it was often a mention of Stephen Hawking that made them understand. A member of staff from an underground station was particularly interested in Giving Voice as she said she wished she could received more training on supporting people with communication difficulties, owing to the fact that she comes in contact with them regularly.

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Teams using their Communication Boards to ask for help. 

Once teams reached their first location, they had to use their BoardMaker Communication Boards to ask for help, and were then given a written clue by committee members. If they needed further clues, participants were encouraged to continue using their AAC rather than resorting to using verbal language. Many participants realised how limiting this could be and would often search their communication boards for things they wanted to say, and had to use gestures to fill in the rest.

There were 5 locations around Bloomsbury that the teams had to find, and each location employed a different form of low tech AAC,  including image boards, yes/no cards, pen and paper, alphabet boards and fingerspelling. Once all 5 locations had been visited, they would eventually be signposted to the final mystery destination, which was, of course, a bar!

Throughout the course of the evening there were various challenges that the teams were encouraged to complete in order to shave minutes off of their final time. These included “Buy something for £1 using only AAC to communicate” and “Ask as many people as possible what the time is without using your voice”. A particular favourite was asking teams to spell GIVING VOICE with their bodies!

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‘Giving Voice’ letters formed with their bodies!

Additional fun challenges led to 5 random objects being collected, one stranger being videoed using AAC, 10 members of the public being spoken to about AAC, 22 instances of asking for the time without using words and 5 items being bought in local shops using only AAC. One team discussed the challenges they faced when buying an item in a shop: they found it hard to get the shop attendant’s attention without using words, as he was on the Screenshot_20161020-142327.pngphone. They then felt that he was trying to look at all the symbols on the communication board rather than the symbol that the team member was pointing to, which she found frustrating.

Overall the event was another huge success for UCLU Giving Voice. We had 25 people attend from a variety of courses including Computer Science, Psychology and Linguistics. Participants were eager and committed to using their AAC devices and were creative in the ways they tried to communicate for example demonstrating their knowledge of Makaton Sign!

This event gave attendees the chance to experience use of low tech AAC to replace speech. Some said AAC was fairly intuitive, but reflected that there were additional options on devices such as the communication board that they didn’t use but thought could have helped them in some interactions. This led to conversations about the need to promote uptake of AAC devices by thinking about the user’s needs and competence, and ensure there is support and training for users. One team member stated that AAC provided a shared experience, such as the letter board, because everyone could see what was being typed. This led to a conversation about

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Teams using their Communication Boards to ask for help.

attitudes towards AAC, and the fact that there are types of AAC that are becoming more ingrained in everyday life. For example, the increased use of everyday devices that require typing may mean that AAC may no longer be perceived as ‘odd’ or ‘different’.

The event ended in the UCLU Library Bar where some participants even used AAC to order pizza. The man who served them was not phased at all and engaged easily with their Boardmaker Communication Board. He said it seemed to “make sense” and was appreciative when complimented on his good communication skills.

Team One were the overall winners of the 2016 AAC Treasure Hunt, and received a little parcel of goodies. Congratulations to team one! Head over to our social media pages to see more photos and videos from the evening.

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UCL Giving Voice Committee

Facebook: UCLU Giving Voice Society

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

 

UCLU Welcome Fair 2016!

On the 1st and 2nd October the UCLU Giving Voice Committee attended the UCLU Fresher’s Welcome Fair and had a fantastic time meeting new people and spreading the word about Giving Voice. Rain definitely failed to dampen spirits!

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Our eye-catching stall at the Fresher’s Fair.

 

Thanks to RCSLT Giving Voice UK we were able to decorate our stall with Giving Voice badges, pens and balloons. We had spent time creating banners, posters and flyers to inform the freshers about what Giving Voice is all about, and to advertise our future events. We managed to hand out 295 flyers to people over the course of the two days!

We created many fun, quick challenges for our visitors to complete in order to enter into a prize raffle draw. The aim of these challenges was to get people talking about speech, language and communication difficulties, by asking people to describe certain terms without the use of words, produce signs, or reading a jumbled sentence with a fact about SLCN.

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Teaching us the BSL sign for ‘Festival’

We were really impressed with the response to these challenges and the number of people who were willing to give it a go and engage in a conversation about it with afterwards. We were able to teach at least 8 people to sign “hello, how are you?”, and one girl taught us a new BSL sign for ‘Festival’!

Over the course of the weekend, we also took the opportunity to carry out a quick poll to discover how many people knew what a Speech and Language Therapist (SLT) did, and how many people had experience with someone who had a speech, language or communication need (SLCN). We managed to ask 122 people these questions and had some really interesting responses!

Only 37% knew what an SLT did, with a common response that they ‘help people who stammer’. Two of the people we asked knew someone who was a practicing Speech and Language Therapist. 40% of people had experience of someone with SLCN. 3 people had received therapy for speech or language difficulties as children and 4 people had friends or ffreshers2amily with Autism Spectrum Disorder and had seen SLTs make a difference in their lives. 1 person had a hearing impaired classmate and used to sign to her in classes, and 1 person had a friend with a stammer.

Only 17% of people we asked had heard of Giving Voice: most other people assumed it ‘something to do with singing’, and those who had heard of it associated the society with ‘volunteering’. One person we spoke to actually felt he had an undiagnosed language problem and found it particularly interesting to hear about the work around supporting people with these difficulties.

We also used this opportunity to talk to other societies, such as the UCLU Sign Language Society and the UCLU Volunteering Society, and we look forward to working collaboratively on some events with them in the future!

Overall, the response was great and one girl who didn’t know what Giving Voice or SLCN was on Saturday, even brought her friend back to our stall on Sunday and explained it to her. We hit social media hard over the weekend, documenting everything we were doing, and with great results:

119 likes on our Instagram photos (and counting..!)

comments on our instagram photos

86 ‘engagements’ with our Twitter posts (number of interactions with tweets, eg liking, retweeting, clicking a link)

1,900 ‘impressions’ on Twitter (number of times users saw the tweets on twitter)

10 likes on twitter

16 likes on Facebook

 

We’ve really had an amazing weekend as a committee interacting with you all and spreading awareness. Here’s to the year to come!!

We will be announcing the winner of our raffle prize soon, so keep an eye out on social media for the announcement!

twitterlogoUCL Giving Voice Committee

Facebook: uclugivingvoicesociety

Twitter: @GivingVoice_UCL

Instagram: uclugivingvoice

 

 

Augmentative and Alternative Communication Challenge – Days 4+5

These last two days I have really been feeling worn down by my challenge. The things that I would usually find so easy such as chatting to my friends, ordering my lunch and taking part in classes have been such a challenge that now at the end of the week I am feeling very tired.

I definitely feel that my ability as well as my desire to be included socially and educationally has decreased over the week.

Not only have I found myself deliberately avoiding having to communicate with people more than necessary, but I have been found that people who I would normally talk with have been avoiding me too as it is too difficult to chat.

I have been finding it easier to gravitate towards people who understand me better and relying on them to translate what I am saying to others. This has made me feel dependent on others for my basic needs. I have definitely felt less able and less confident in public when I m on my own.

Throughout this challenge and more so towards the end, I have felt as if I have been in my own world which is not accessible to others. I have often felt that I can’t take part in the social world created by others, not without a great deal of patience and translation on their part anyway.

Short interactions have been fine but when somebody asks open questions or discusses a topic more in depth, we often get stuck and I have felt embarrassed by my inability to adequately respond and maintain the conversation.

I have been mainly using a talker app whereby I type in text and an electronic voice says it out loud. This has felt a little like cheating however as many people who use AAC are not able to type out what they want to says due to physical or cognitive disability. Many use much simpler constructions or even simply yes/no buttons. I am also able to understand what my friends and lecturers have been saying, whereas many people using AAC would have difficulties with this as well. My difficulties then have only reflected a fraction of the difficulties those who genuinely use AAC face on a daily basis.

It is a relief to be finished with the challenge but even though I can go back to living life as I have done in the past, I now have a better understanding of just how difficult even simple tasks in life can be for people who use AAC.

A huge thank you to everyone who has helped me this week. It feels great when somebody cares enough to take the time to wait for me to communicate and who perseveres even when the conversation becomes stuck and awkward. It is easy to ignore or breeze over communication with people who use AAC and without those people I would have been very lonely indeed!

Helen Currie

Augmentative and Alternative Communication Challenge – Day 2

Last night I attended a dinner party at my friend’s house. I continued using a high tech communication aid and basic sign instead of speech.

It was interesting to find how challenging I found communicating in a social group environment. I had to try and gain the attention of the group when I wanted to initiate communication which was sometimes a bit of a challenge. Tactile cues were useful in this regard. Therefore ‘gaining the floor’ was very hard. Often people would know I had something to say when I started tapping on my device so the group would go silent to wait for me to ‘speak’. This felt a bit awkward as we often feel the need to fill gaps in conversation. Using eye contact and other social cues and gestures were also hard as I was concentrating on using the device so it perhaps appeared that I wasn’t interested or attending. I found commenting on another’s story very difficult as I simply did not have the time to make a comment before the topic switched.

Technical challenges with my talker app became apparent. The noisy atmosphere was a difficulty as the volume on my talker app could not compete. I sometimes had to hold up words for people to read. The voice on my talker is very robotic and does not have changeable prosodic features of normal speech. This means features such as speed, rhythm and intonation were all completely lost and some things I ‘said’ sounded unnatural or insincere. I often had to repeat things as it was not easily recognised the first time. Another thing that was lost was my identity though my accent. At one point I used a dialectal word (I am Scottish) unwittingly and it sounded like I had made a mistake on my talker.

One of the strangest things, which was picked up on by my friend, was that people started getting things for me as if I couldn’t do things for myself. Using the talker had made me appear more disabled than I was. I was extremely tired after the dinner party through the constant striving to make myself understood that I fell asleep straight away when i got home.

Today I tried out using AAC in public when I went shopping. I used my talker in a coffee shop to order and had to hand my aid to the server to read as she could not hear it. She accepted this however and did not treat me any differently. I asked another server for milk using sign and she led me to the sugar tray. I resorted to some made up gestures to eventually get my point across. I found that in another shop I had difficulty getting a server to look at me so I could try and gesture. She eventually caught on what I was doing and slowed down to my pace. I found it was a good idea to try signing and gesture as some people respond well to this and could interpret what I needed (especially if they knew BSL/Makaton!) however some people quite naturally got very confused so I went back to using the high tech talker app.

I think that one has to have a great deal of confidence to go out in public and use AAC to strangers, I found it very awkward at first but was heartened by the perseverance which some people showed in interpreting my wants and needs. It has certainly taught me to be imaginative in how I use gesture and body language!

Helen Currie

Augmentative Alternative Communication challenge – Day 1

Today I used Alternative Augmentative Communication (AAC) to talk to people. I used some basic sign and a ‘talker’ app on my handheld device instead of speech to communicate at university.

It was really hard not to just break into spontaneous speech during the day and extremely frustrating. I found that in the time it took me to type what I wanted to say on my device, the conversation had already moved on so I got left behind. Because I was so slow to respond, people tended to try to avoid having to talk to me after a while and would ask someone else nearby the same question because it was easier. People also started to answer questions for me which I found useful but which also meant I lost chances to express myself.

When I signed to people, I found that those who knew some sign/makaton would spontaneously sign back which was great because it felt like we were both the same. Even those who did not know the sign would try to interpret what I was saying from the actions. I loved that people were really trying to find out what I was saying.

At university I had difficulty participating in a workshop I attended. I had to interview my peers and be interviewed but it was frustrating for both sides. A positive was that it slowed down the pace of what I was saying for my interviewer. I think this would definitely impact on my learning and ability to access my education in the long term. I also didn’t want want to answer questions in class because I didn’t want to draw attention to my alternative way of communcating.

The most interesting thing I have found from using AAC today was the change in myself. I found myself withdrawing from conversations and I found it easier to avoid people rather than deal with the problem of communicating. Being on my own meant that I felt normal and that my difficulties weren’t immediately obvious!

I guess I am quite embarrassed about communicating through my talker even to my friends. I am a little nervous to try it out with the general public but this is a new challenge I shall need to try tomorrow.

Helen Currie