3) Showcasing The Include Choir’s special song In My World, and telling the touching story behind it (below).
4) Streaming songs with messages about Kind Communication at #KindFest2021 – the world’s largest online festival of kindness.
5) Sharing the first of Include’s organisational values – decided through coproduction workshops earlier this year… Can you guess what it is?!
In My World…
From the depths of lockdown came a beautifully unifying and uplifting song. It will be showcased at KindFest2021 on World Kindness Day.
We spoke to the three main creators…
“I actually love the song. It makes me feel good and calm. I like singing it and it’s good when the choir sing it,” says Louise.
“My Mum taught me how to play piano and at college I had singing and piano lessons. I have done (Makaton) signing all my lifetime since nursery and school – it helped me lots with learning and communication”.
All of these skills come together when Louise helps The Include Choir.
The inspiration for her song started when the Makaton sign of the week word was Colours. At this time, Include was delivering many services online (not just singing) and offering self-care tips to help people feel okay during lockdown. Louise shared her top tip, which was that coloring helps her to calm. And she has a special book called Keep Calm and Color Unicorns!
But Louise’s all-time favorite phenomenon is the rainbow.
And this is at the heart of the song. She says; “I love colours – they make me feel good – all except black and grey – even though I’m wearing a black T-shirt today! Ha!”
Sue, Include’s resident accompanist (and Louise’s Mum) helped write the song and compose the music.
Sue says; “I asked Louise to think of beautiful things to do with colour. Her input is there throughout; sunsets over a calming sea and the hazy blue of the sky.”
Sue credits her then fiancé, (now husband) Paul, with one of the lyrics “the blushing pink of the roses” because he bought and named a rose for her “The blushing pink”. But says Sue; “Without Louise, there would probably be no song – she is the true inspiration.”
Sue is keen to point out that the song can still feel relevant to people with visual impairments “that’s what colour mean to me” can refer to how people imagine colour.
A stunning animated video featuring The Include Choir and many members of the community singing and signing the song was created by fabulous volunteer Xinning.
“I was living with my boyfriend in a flat in Manchester when I joined this project. Because of the lockdown, we spent all day in the living room working together. But I didn’t meet anyone or make any friends during the lockdown.
I sense the message from the song is that no matter how many difficulties we are facing, always remember to find the existence of beautiful things in our world. I really enjoy the song because gives me the power to get over a hard time and find people who are caring for each other.
I use the simplest way of making animation, which is to draw frame by frame on a computer I believe this is the strongest way to express emotion. I choose to use simple shapes to animate. It is concise and lets people easily understand the meaning which the song wants to convey.
Louise suggested a great idea which was to add butterflies in the animation. She also provided illustrations of butterflies from members of the choir.
I animated it in a rigging animation software.
It makes the video lively.
It feels great to hear people’s feedback on my animation. Sometimes I feel doubtful of my animation but once people told me that my animation is good, I feel everything is worth doing.”
We asked Hannah to share some more of her thoughts:
Why did you decide to create the Black Lives Matter (BLM) Easy Read Resource?
“George Floyd’s brutal murder last year led to this huge international conversation being had about race relations. As a result, lots of information and resources were shared in the mainstream media and online about the variety of ways people can get involved and engaged with the movement for racial equality. However…
…I had noticed this information was not being conveyed in an accessible format and with the assumption that everyone has pre-existing knowledge on the origins of the BLM movement.
Therefore, in line with our principles as inclusive communicators, we wanted to create a resource breaking down key concepts related to the BLM movement which everybody could understand.”
Why should people with communication needs have access to information about the Black Lives Matter movement and Black history in general?
“There are many parallels in the daily experiences of the Black community and people with communication disabilities.
These two groups face significant prejudice in today’s society, which has led to both groups facing similar educational, employment and mental health outcomes. We also know that a significant number of people are disabled and from the Black community.
For example, “In the year to March 2020, almost 4,200 people per 100,000 in the population of England used secondary mental health, learning disabilities and autism services and out of all 16 ethnic groups (excluding groups labelled ‘Other’), Black Caribbean people were most likely to use the services”.
It is important that people with communication needs can become more informed about their rights and the rights of others, and share their own experiences and insights.
They are part of the community and part of belonging is having ways to unite and engage with topics like Black Lives Matter.
By providing access to alternative formats like easy read and audio information, we can empower people to be part of the BLM movement and work towards reversing these current outcomes.”
How we can improve and promote Diversity and Inclusion at Include.org?
“It is important that we listen to existing BAME members and give them the space and time to talk about their experiences of existing within the intersection of being a person of colour with a communication disability.
In addition, I think that it is important that when it comes to engaging in conversation with people of colour, Include.org does not assume that everybody shares a similar experience.
Listening to individual experiences is key. This is the same standard that is applied in terms of people with communication needs – don’t assume someone’s abilities – take the time to get to know them.
Overall, all Include.org members regardless of race and disability should be encouraged to be aware of the Equality Act 2010 which protects everyone and was designed to empower those most vulnerable and marginalised in society.”
How do you integrate with a new community and learn a new language when the world is in lockdown?
2020 was a strange and very hard year for many people living during the height of the global pandemic. Our very talented graphic design volunteer Christian was trying to settle in a new country at the same time.
We asked him about his experiences…
Before the pandemic took hold – I had moved to the UK from my country – that was January 2020.
At first it felt a bit strange to adapt to a different culture, a different language and I felt a little bit out of place at the beginning.
“A friend mentioned that volunteering would be a great way for me to start integrating with society, and I want to do something that makes a positive impact in people’s lives.
I saw other positions advertised, for example, there was one asking for a designer to design books like editorial things, but I wanted to do something that made a positive impact, felt fulfilling for me and allowed me to communicate with other people – not just be working in isolation behind a screen. And I think I found that by joining Include.”
“I think Include played a key role for people with communication needs in the height of Covid19, making them feel more connected, even though we weren’t allowed to be face to face.
I was also feeling isolated, so having the opportunity to have Zoom meetings and be working on something meaningful made me feel like I was getting my sense of belonging to a place – and that’s what I was looking for.
Before then I had barely spoken English.
I understood the grammar, the sentences and the structure because of my work in graphic design – all of the software is in English. And I enjoyed watching English-speaking TV shows with Graham Norton, for example. But I never had the chance to actually speak English until I moved and started volunteering.
I got to do so many meetings and things like that, I think it really helped a lot in developing my confidence with my speaking abilities.”
At Include we’re always using different tools to enhance communication experiences for people.
Sometimes that can be using Makaton signing and visual objects of reference, but we also use technology and apps like Pictello and ProloQuo2Go to ensure everyone can get their message across.
During our chat for this blog Christian told us something we had never realised.
“I’m going to be honest, at the beginning when I joined Include, I used to copy emails I received and put them into a translate tool to check what it means in Spanish. Then I used to write my emails, first in the translator, and then put them in English, and then correct them because the tool is not 100%. And that’s how I leaned to adapt. Now I don’t need to do this, but it was important at that time.”
A new perspective
“Include has taught me how to be more respectful and mindful of other people’s needs that are different to mine. And always to be aware that even though people have different needs, at the end of the day, we’re all the same. We want to be understood, we want to communicate, we need and want to connect with other people. I think even though life presents many barriers, they can be overcome if you keep those things in mind.
From the perspective of graphic design, I feel like I’m more aware now and try to make designs more accessible for everybody.
“Whenever I talk to people about Include, I tell them that it feels like a big family, like a big community. I got to join a few sessions with the choir members and other volunteers a few times. And I felt like I was welcomed with open arms by everyone, even though I wasn’t like a regular, they were very friendly to me.
People from Include have made me smile many times. But I think the one closest to my heart is when you sang and signed Happy Birthday to me – it was really nice.”
chocolate and biscuits
There are some things about any society that you can only really learn about through social interaction. No text book or software will truly explain. Christian credits Include with teaching him about the important issues of chocolate and biscuits – or is it cake?!
There was a whole round in the Include virtual Christmas Quiz about chocolate! He says; “That was something new for me because I never thought that chocolate was such a serious subject – I enjoy it too of course! I know now that cups of tea and chocolate biscuits are also culturally significant. My favourite is the Yorkshire black tea with a little bit of soya milk.”
Then Christian dropped a bit of a bombshell!
He revealed that his favourite biscuit is…wait for it… Jaffa Cakes!
So, we had to have a chat about whether Jaffa Cakes are actually biscuits or cakes!?
Quite a contentious area as tax is charged on chocolate covered biscuits, but not on chocolate covered cakes. A Judge ruled in McVities favour during a legal case in 1991 – declaring that Jaffa Cakes are actually cakes!
I like to think his experience with Include has helped Christian maintain his open mind. Because he does concede; “Hmm it’s because of the texture, the consistency of the base I guess it’s like a bread or… (errr… is cake the word you are looking for Christian – ha!) yeah yeah, I can see that!”
Volunteering as a pathway to paid work
“Include has helped me to adjust to a different culture, working with British people, the way you work is a little bit different to where I used work. Include welcomed me with open arms and showed me how things work here. It gave me the confidence that I was able to produce high quality work that was also making a positive impact.
Include’s CEO Alix, is one of my professional references on my CV, so that is really helpful and means a lot to me because Alix is awesome. She’s so kind, patient and hard working. You know, it’s a lot of work running a charity and she’s a mom, too. It’s amazing how she does it.” And the admiration runs both ways.
Alix says; “Christian has been an absolute blessing to the organisation, from the moment he joined us. He brings a level of professionalism to everything that he does and right from the start (even when language was a challenge, which he hid so well) he came up with fresh and inventive ideas to help us really build a brand image for Include which we have never had the resources to do before.
Without him, I don’t believe we would have had the successful fundraising campaign we had with last year’s Big Give Challenge – or won their Small Charity Award. Christian, and other amazing volunteers like him, really do make a difference to people’s lives.”
Next big challenge
Christian has just started a new job. He says; “In the interview, I was asked to present any work I had done in the UK. And I presented about Include. I talked about The Big Give Christmas Challenge 2020, where we had a fundraising goal, and through our campaign we managed to double the money raised to £10,000. That was a highlight during my interview.”
Christian has kindly offered to stay involved with Include. We could not be more delighted! He has high hopes for Include…
“I’m hoping the choir can start to do some more public performances – it’s difficult because of the pandemic but gradually going back will reinforce the sense of belonging and being together. Travelling together and going to do a performance at a different place – those things make people feel more included in wider society, I think.
And although I have less time to volunteer, I’m going to try to help Include to raise even more money in The Big Give Christmas Challenge 2021. This year Include needs to raise £20,000 to expand their inclusive communication services to more people in more areas.”
We’d love to perform and deliver training up north again one day Christian – and you will be number 1 on our guest list. Thank you for all you do for us.
What does it take to be recognised as The Mayor’s Young Volunteer of the year?
Please meet one of our most generous, energetic and versatile volunteers…
Sofia first got in touch with Include aged 13, to ask if she could do her Duke of Edinburgh (DofE) Award volunteering section with the charity.
For some young people, volunteering as part of DofE may a bit of a “tick the box” exercise to get the award. But not for Sofia.
She says, “I wanted to work with people. All my friends were going, ‘I just want to get this bit over with so I’ll just go to the public library for a few weeks and quietly help out there.’ But I didn’t want to go to the library! (I thought) ‘I don’t think I can cope with that! So, I’ll find something else that will be more fun’.”
What she didn’t have in experience she made up for in enthusiasm, empathy, humour and versatility. Include’s volunteering experience is a great fit for Sofia.
“Include is for everyone that wants to learn and wants to have fun and meet new people that they wouldn’t necessarily meet.”
Sofia’s talents and willingness to learn new things – mean she has helped Include in a wide variety of ways. She famously understates her contribution as “I just do a little bit of everything!” But really, she is an essential part of the charity – keeping important things like AV technology running smoothly during rehearsals, helping people to feel welcome and calm, and creating accessible Easy Read resources.
This last year has uncovered even more of what Sofia has to offer. She helps Include to rise to the challenges of Covid19 – adapting to new platforms like Zoom, piloting a covid-safe roadshow and doing more than ever on our social media channels to help raise awareness of what we do to break down barriers for people with communication needs.
Follow the Include Instagram account that Sofia manages here
When asked how volunteering for Include has benefitted her, she says, “I got to do so many things that I wouldn’t have. I’ve been responsible for things and I’ve learnt how to be responsible for other people and, you know, build trust with others. Obviously being the youngest, you don’t know if people are going to trust you that much. But I’ve been trusted with big things. And taken them forward and have kind of shown that I can do it.
“So yeah, it’s fantastic to have a charity that have just gone, ‘Yep, Sofia can do this. She’s our girl.'”
A few years down the line, working with people with additional needs is something Sofia is embracing in her working life too. She landed a teaching assistant role in a local school, working with a young boy who has autism. Being able to help calm and distract him are skills she has used in choir rehearsals. She remembers one rehearsal: “A member of The Include Choir was having a hard time because there were lots of upcoming event date announcements and then it was break time, when people go to get a cup of tea and chat. I noticed that he got a bit stressed. I took him to the side and was like, ‘Do you want me to get you your biscuit and a drink?’ And I told him, ‘I’ll get the dates printed out for you.’”
Sofia also works behind the counter in Boots and her Include experience has been helpful there too. As an Include volunteer she has learnt Makaton signing to support people with a range of communication needs, and this has given her the confidence to also learn some British Sign Language.
“I see a lot of deaf customers in Boots. My colleague was struggling to help a deaf couple once, and was just shouting. So, I went over and I signed, “Do you want to buy with cash or card?” and ”Can I take my mask down so you can lip read?” Now if deaf people come to Boots, they seem to navigate in my direction!”
“I try to do my bit in the community to make everyone feel included and I just love seeing people who join Include connect. It’s like a big family. Seeing the support workers get involved as well as the members, when everyone is joining in, is fantastic!”
“I remember watching two Include Choir members with different levels of communication adapting to each other. He was signing to her using Makaton signs that he just learned from a song – really trying hard to sign and talk to her. She is limited verbally and does use a lot of Makaton. He had an idea – and went to get an iPad with a supported communication app on it – and then those two were having like a conversation on the iPad and it was so sweet. And it’s in moments like those that all our team’s hard work is so very worth it.”
Everyone at Include is proud of our girl Sofia for the wonderful achievement of receiving this award and for all the creativity, energy and warmth she brings to everything she does.
See Sofia and find out more about volunteering with Include here
It is so important to make sure people feel listened to and understood, especially if communication is not easy for that person.
Really listening to someone can make them feel good. It can really turn someone’s day around.
We spoke to one of our members Josh about why listening skills are so important.
We asked Josh because we have seen what a careful and patient listener he is in person and via Zoom, one to one, in a big group and as an interviewer. Josh’s top tip is:
“Don’t interrupt – it’s annoying – just listen.” He says “If you are in a big group wait your turn to speak, if you are on Zoom you can go on mute. When they have finished speaking you can reply.”
Josh thinks it is a good idea to make sure you have understood correctly – either by asking someone to repeat what they said, asking questions or saying back what you’ve heard.
We talked about how important it is to pay attention to non-verbal communication. And if you are talking to someone who is blind you need to remember that your own body language, smile, nod or Makaton won’t easily let them know that you are listening – you need to say something.
As well as listening to people speak, Josh loves listening to people singing in choirs – which is one reason he is a member of The Include Choir. One of the commitments all our choir members make is to “be good at listening” – these are lyrics in our Include Choir Agreement song, which is a code of conduct written by members.
Please let us know what you think of our resource – we’re ready to listen to your feedback.
Our guide is based partly on Samaritans’ SHUSH listening tips. You can learn more on their website at samaritans.org/shush
When The Include Choir meets virtually or in person we often talk about food!
Last week we voted on whether we thought it was good to have pineapple on pizza – or not.
Quite a controversial topic!
Good nutrition matters
When we can meet up in-person we have snacks available, ranging from the very healthy like carrots and seaweed to treats like biscuits, and we’ll admit it…sometimes we have cake!
We take care to offer a range of food options. While food can be fun, we know that being healthy can be a challenge for people. We also know that sometimes it can become a serious issue for people with learning disabilities or autism.
“Good nutrition is vital to the health and wellbeing of people with learning disabilities, but they are more likely than the general population to be underweight or overweight/obese, in most cases due to lifestyle factors and not to causes inherent to their learning disabilities.”
LeDeR Programme Fact Sheet 28, 2019
Free Resource about being Healthy
During Healthy Eating Week this June we know quite a few of our members have been paying special attention to what they eat. Well done everyone.
Our Choir Rep Hannah has worked alongside our volunteer Sofia to produce a free Easy Read resource about being healthy. We hope this will be useful to other people too.
We are producing one free Easy Read resource each month for a year as we explained in our blog last month.
A bit about our role model
Hannah is a very active member of The Include Choir.
She works hard to get the balance right between having fun and enjoying food and being healthy.
During lockdown she has been exercising at home and sometimes shows us what she has been baking.
Hannah keeps track of all her activities on a weekly planner.
One way she keeps fit while having fun is doing Bolly X, a fitness class inspired by Bollywood dance.
Hannah works in a supermarket where she can get free recipe cards and she also subscribed to Easy Cook magazine. One of her favourite recent bakes was Cinnamon Bun Muffins – don’t they sound delicious?! Her favourite healthy snack is melon.
Hannah says; “It’s ok to have some unhealthy stuff but not every day. It’s a good idea to look at the back, at the ingredients, to see how much sugar is in it.”
Hannah knows that what she drinks is important too. She likes cranberry juice (cranberry light) and also drinks about 6 cups of water a day.
We hope our free Easy Read resource inspires you to try one of Hannah’s ideas…
On our 5th birthday (4th May) we can’t physically get together to celebrate – instead we’ve gathered a few of our choir’s best bits from the last 5 years!
The Include Choir has not stopped making brilliant memories, no matter what comes our way – global pandemic included. And there is plenty more planned for our 5th birthday year, and beyond.
The Include Choir contributed to performance at Warwick School, which was also the start of our current Choir Rep, Hannah’s passion for our fellow singers the Vocal Dimensions Chorus Include Choir Agreement – YouTube
We did our first Carol singing at The Belfry shopping centre and Redhill Train Station The Include Choir at Carols at the Belfry – YouTube . These became firm favourites each year – long standing members Marian and Ellie both love these events. Ellie said; “My favourite memory was everyone singing Happy Birthday to me at Redhill Station where we were also Carol Singing! It made my day!”
Include’s CEO and Founder Alix Lewer, recalls our 1st Birthday, when we had a visit from the local Mayor, (then) David Powell; “He was fab, played a mean guitar, 2nd only in Include Choir ‘Mayor Guitar’ soloist Hall of Fame, to Keith Foreman!”
David’s Favourite memory was singing about the Mental Capacity Act at an Advocacy Conference at the BMW/ Mini Factory in Oxford.
Hannah’s favourite memory is our 1st Big Sing with Vocal Dimension Chorus and holding Alix’s son Leon with Ellie. She and Sarah also loved teaching our supporters from BoostFit how to sing and sign our “Hello song”, joining in with the exercises and running a stall (Val and Ellie were there too).
Charlie loved singing at The Barbican and teaching choirs from across the UK the signs for ‘The Kettle’s On” – based on Jamie’s words for the Sky Arts project ‘When We Collide’.
In our fourth year the Choir was in demand and we were invited to perform at more events and speak on more radio shows than ever before!
Ellie loved our Radio moments; Sarah and Jay on Susy Radio, and herself & Josh on Redhill Hospital radio. She and many other members also loved our special Sing and Sign in the local Park event for Sai (a member of our choir who sadly passed away but is not forgotten).
Josh is brilliant at seeing the funny side of slightly tricky situations. He enjoyed when we got stuck outside St Bart’s hospital in London (where we were booked to perform at a conference) and had to drive round and round because of roadworks. Our Choir Director, Alix kept getting out and the Coach Driver would say ‘I can’t stop here’ and he would just drive round the block. We just couldn’t find the way in! We were over an hour late – but we got a standing ovation and had to sing 2 encores for our performance when we finally sang!
We also remember David getting the fastest time for the sensory 1k at Parallel London!
5th year that no one could predict…
The 5th year of The Include Choir changed many things. We went online and we reached new people. Our online following has grown and we have over 300 members on the Include Choir Online Facebook page.
Philip and Simon found us and now love joining The Include Choir online from Hampshire (and we love having them!)
Geoffrey Dennis started working for include.org helping Alix to grow the charity as Head of Business Development. He loves the colour song that our member Louise wrote (In my World).
As well as writing a beautiful song, Louise loves seeing her friends at the Include Choir so much that she learned to use Zoom, and re-joined us online during the second lockdown.
Also during lockdown, Charlie enjoyed joining members of The Include Choir and SASH choir online to virtually sing ‘We’ll meet again’ for the 75th anniversary of VE Day.
Our regular member and percussionist David has loved being able to spend longer learning the songs while we’re online. And we have loved hearing his excellent singing over lockdown.
Sarah is really glad that we’ve been online this last year so she could keep in touch with friends and she is very proud to be Ambassador for The Include Choir.
And that’s just a small taster of what we’ve done together.
Reflections of a Small Charity CEO after an unprecedented year
‘Oh crumbs’ (or words to that effect), ‘this Covid-19 situation really is serious’ was roughly the thought crossing my mind as I arranged an emergency meeting of Trustees on Sunday 15th March 2020.
What were we going to do?
We’d already put some measures in place at the end of February to try to keep people safe at our choir rehearsals (hand sanitiser / writing a song about how to keep safe etc). We had cancelled an event taking place in a care home. Which, knowing what we know now, was absolutely the right move.
But by 15th March there was a strong sense that we needed to go further.
So, pre-lockdown, I faced my technophobic fears and we moved our weekly Wednesday evening choir sessions to Facebook Live (instead of gathering at our usual venue in Redhill). There was a huge sense of uncertainty about this, would we be able to continue supporting and connecting people, would our members come with us, would people still need Include ‘on a screen’? We just didn’t know.
As it turned out, the answer to all of those questions was yes. Even pre-pandemic, many of our existing members were at risk of feeling isolated from parts of society, due to the unequal experience of people with learning disabilities or autism.
Then, on top of this and the national lockdowns, many members are shielding and/or face restrictions on visitors to supported living or residential settings. Others moved homes to families, leaving friends and routines behind.
Now was not the time to reduce what our charity offered.
Instead, we had to adapt and support more vulnerable people to adapt too, so they didn’t become more isolated or anxious. We asked Include Choir members what they ideally wanted and when. We increased services, volunteer and staff numbers, and we committed to deliver what they needed through platforms like Zoom and Facebook for free, for as long as possible. Which was far longer than any of us expected.
At times, it has felt like hammering square pegs into round holes.
As a speech and language therapist, and former NHS safeguarding adults lead with 2 small children, I thought I was used to juggling multiple priorities, wading through bureaucratic quagmires, having difficult conversations and making challenging decisions. I’d already discovered that founding and running a charity (with 2 small children) was akin to juggling flaming torches blindfolded, while spinning plates and balancing a trifle on your nose…
…and now, a pandemic?
All the feelings
Having to make decisions about a situation where the information is unclear, the support to understand it limited and the consequences uncertain has been uniquely unsettling.
Having to shout so loudly to ensure our charity’s voice was heard and supported amongst the clamouring of so many in need, exhausting.
Feeling utterly powerless to control the direction of travel or be anything other than reactive to the situation left me feeling, at times, utterly despairing of ever making progress in long-held plans.
The sense of loss – it has felt so sad and uncomfortable that a key part what we are and love to do (sing together) has been under scrutiny and deemed high risk.
It felt, in short, as I imagine it often feels to be a person with a cognitive communication impairment (understanding and speaking difficulties). This is how many of our members (and some of their family members) tell us that life before and during the pandemic makes them feel:
intimidated by the world
not listened to
powerless to change things
Looking back over the last year, what has struck me is not the fear, the anxiety, the frustration (don’t get me wrong, all those things were there in abundance) but what was notable from our members, (and our volunteers and staff) was the resilience, the determination – and the ability to rise above expectations and external limitations to connect and create something beautiful for one another, showing what is possible when we can create the right fit for everyone.