Covid-19 | Include.org

Happy 5th Birthday to us!

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.

Looking back…

1st year

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!”

2nd year

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!”

This was also the year that we wrote and performed our first Mental Capacity Act (MCA) song and met our now Patron – Baroness Ilora Finlay Remember… The Include Choir & the Battle Hymn of the MCA – YouTube .

Members David and Josh have fond memories of singing the MCA song – and still love it now.

3rd year

By our 3rd year we were beginning to get bookings far and wide!

Ellie has fond memories of meeting Andrew from Britain’s Greatest Dancer at the Family Voice Conference in Woking, where the choir performed and ran a workshop in April 2019.

Sarah loves being on journeys up to London to perform together – by mini bus or train. She said; “ I also remember one rehearsal where we couldn’t get into the venue, a church, so we all sang in the carpark!” Rowing boats in the car park – The Include Choir – YouTube

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’.

4th year

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!

Sarah will never forget the special dress-up Big Sing event for her birthday. There was cake too! Films, musicals & pancakes – The Include Choir – YouTube

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).

At the event we remembered how kind Sai was and how he always made us smile. We performed some of his favourite songs with his family alongside us. The Include Choir’s Sunshine Big Sing 2019 – Remembering Sai

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 75^th 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.

Bring on the next 5 years!

Penny Sims
Communications and Partnerships Manager

A Square Peg in a Pandemic-shaped hole

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 15^th 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 15^th 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.

Increased demand

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.

Juggling blindfolded

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:

confused

intimidated by the world

not listened to

powerless to change things

frustrated

judged

And yet…

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.

Alix Lewer

Helen’s Story

Here’s Helen’s story…

“People kept recommending the choir to me because they know I love singing and signing. Eventually, I thought I’m going to give this a try. From the minute I arrived everyone was so friendly; I knew it was something I wanted to stay involved with. I absolutely loved it and I was sold.”

Helen finds it difficult to choose a single favourite song, she says “We recently recorded This is Me (from The Greatest Showman) for the big screens at Heathrow airport and I thoroughly enjoyed that. I enjoy a lot of the songs, especially the Christmas songs, they are always fun.”

Always learning

After training as a Speech and Language therapist with Alix Lewer (Founder and CEO of include.org), Helen joined The Include Choir to share her love of singing and signing – and to see what she could learn.

Helen says she’s learnt “to communicate with all sorts of different people, including people who are really challenged in their ability to communicate effectively. I do know Makaton but every week I am learning more signs, it is fantastic. We have so many different kinds of people in the choir, that is the main thing I have taken away – learning from the other members.”

Linking up in hard times

Helen says that the choir really helps to keep her mood up. “I have actually had quite a lot of mental health difficulties in the last two years. While I was off work, I found coming to the choir to sing with other people releases endorphins and you feel part of something bigger. I would say that has been a lifeline for me, and has really helped me not feel lonely or down. I am really grateful to Alix for that.”

Despite the pandemic Helen continues to take part in the choir’s virtual sessions.

“Every Wednesday night I tune into Alix on Facebook, I really look forward to it. On a Friday I do the sing and sign and on Saturday morning I do the virtual tea break, just to see how everyone is doing.

My friend Marian is a huge fan, and even though she has moved to Shropshire, she still tunes in each Wednesday to the Facebook session.”

The Include Choir – does what it says on the tin!

“I think Alix’s vision was to have a choir for everyone to come along to, irrespective of their background, disability, or anything. I think that is why she chose the name, which is a very clever and memorable name” Says Helen.

“The Include Choir is fun, and there is something for everyone. I don’t think it matters if you’re not a good singer or a good signer, you can come and do what you like, take from it what you can. Everyone is friendly and accepts one another as they are and everybody is involved, that is what I love about it.”

She adds, “It is a very unusual choir, we actually put in a video for Britain’s Got Talent, but unfortunately we didn’t get through – at least another inclusive signing choir did!”

Singing Alix’s praises

Now the bit to make the boss blush, Helen says; “I think Alix is a complete star, I am a huge fan of her. She has put so much energy and passion into The Include Choir and I think that has paid dividends, and everyone is very committed. We are like one big family, and I’m sure other people will tell you that.”

Penny Sims
Communications and Partnerships Manager

Josh’s Story

Meet Josh…

The Include Choir has taught Josh singing and Makaton signing.

He says; “The Include Choir makes me feel special because I’m very involved. I help a lot at meetings and rehearsals and keep the choir to time”! He is also a member of the steering group.

Josh often takes part in the choir’s ‘Sign of the Week’ videos, and has found this helpful for learning Makaton. His favourite song is ‘Let’s go fly a kite’ because it’s well known and easy to learn – and good fun with the Include Choir props too!

Josh’s best bits

Josh says that the choir is special as people are able to sign which helps everyone to understand and join in. Josh learnt Makaton when he was much younger, but had forgotten most of it, so it has been good to practice.

Josh’s favourite memory with The Include Choir is when he travelled to London in a minibus with Alix and the choir to perform at Barts hospital.

When they arrived, they were unable to find parking, but the choir does not give up easily and in the end the performance went ahead and had a large audience of about 200 medical staff!

The audience gave some fantastic feedback with comments like “Today I learned that people with learning difficulties are…full of confidence, strength and a sense of fun”.

Josh’s friends and family are fans of the Include Choir too, and have been to watch him perform and sing with the choir.

Josh’s Mum Sally enjoys watching the reactions of people when they see the choir perform, as they get drawn in and everyone enjoys themselves. “Singing with everyone can be quite emotional, as it’s such a lovely feeling” She says.

Sally really enjoyed attending Choir-oke in the Harlequin Theater in Redhill. She says “It was a big event where lots of local choirs attended, and at the end the audience members sang along. Watching the choir use props, like the big flying kite, was really enjoyable”.

Connecting in Lockdown

Sally has been blown away by the dedication and enthusiasm of staff and volunteers in the Include Choir, “I am amazed at how the choir has been able to keep going since Covid19”.

During lockdown, Josh has helped lead an online Arts and Crafts session where members made kites.

He has also been joining all the online choir sessions, sing and sign sessions, and social tea-breaks via Zoom. Josh says “everyone just has a chat…I enjoy sharing news and keeping up-to-date with everyone, even though we can’t be with each other”.

A final word from Josh

Josh says that other people should join the choir and they can expect “a lot of fun singing that makes them feel good”, as singing with the Include Choir makes him feel happy and fabulous!

Sally says; ‘Everyone I come across I tell them about the choir because I think it’s such a good thing to do!’ She would recommend people to join the Include Choir as it’s great fun, and the enthusiasm from volunteers and members draws you in. “I don’t know anyone that doesn’t enjoy being in the choir.”

Penny Sims
Communications and Partnerships Manager

Sofia’s Story

Meet Sofia…

Sofia is a volunteer for the Include Choir, and helps with a bit of everything! She says “My favourite song is I’m a Believer because I love signing it, and it’s one that makes everyone really happy and gets us dancing!”

“Before lockdown, I supported members during choir rehearsals and meetings, helped record videos of songs and the Makaton ‘Sign of the Week’, gathered members’ news for the newsletter, and helped with refreshments!” Says Sofia… “And now I do lots of other things to support the choir online”.

Sofia’s Include Story

Sofia who is a college student, joined the choir a few years ago when she needed volunteering hours to complete her Duke of Edinburgh award. She chose the Include Choir as she thought it would be fun and rewarding, and hoped she could continue volunteering after completing the award.

“I don’t consider myself a singer, but I enjoy singing with the Include Choir as I like the feeling of inclusion and unity that singing together can give to members. When the volunteers like me and support workers sing with the choir members, it makes everyone feel equal and together” says Sofia.

Since joining the choir, Sofia has learnt some Makaton signing, and plans to complete her Level 1 training as soon as possible.

Why is the Include Choir Special to Sofia?

Before joining the Include Choir, Sofia felt she knew about learning disabilities, but feels now she has a much better understanding of them.

“I feel the choir has helped me to gain more well-rounded knowledge about disability and how it can affect people, which has been really interesting.

The Include Choir is pretty cool, as everyone is involved and no-one gets left out.

The people make the Include Choir so special. The members, volunteers, Alix, and everyone are so amazing.”

Sofia says that meetings and rehearsals are different every time because of all the people in the choir which makes them exciting – “you don’t know what’s going to happen, it’s always a surprise!” But one thing you do know – there will be fun. ‘Our choir members are our biggest fans – they sing and dance and they love the choir so much.’

One of Sofia’s favourite moments with the Include Choir is when she was nominated to receive an award of recognition for the choir from the local Mayor. The event was very posh, but she had a lot of fun!

How Sofia stepped up in lockdown

Since lockdown, Sofia has been meeting up with the choir online regularly and organising things behind the scenes.

“I attend the Facebook Lives on Wednesdays, Zoom meetings on Fridays and Saturdays, and I’ve been working on various online projects for Include, such as the Black Lives Matter project. I have also helped create a monthly Include Choir magazine, which is being sent to choir members who have trouble accessing online information, to keep them in the loop and help them feel more connected” She says.

Final Word from Sofia

“People should join the choir to gain a better understanding of other people, and to see that people with disabilities are not that different. The choir and the people in it are awesome!

I really enjoy it and couldn’t ask for anything better. Being a part of the choir has been really cool so far, and I would love to help it grow as it continues. I hope our Big Give fundraiser in December can help us keep going for years to come”.

Penny Sims
Communications and Partnerships Manager

Hannah’s Story

Meet Hannah…

Hannah learnt Makaton in early childhood but she’d forgotten most of it, until she started singing and signing with Include. Hannah and her life-long friend, Ellie joined when Include started in 2016, and have always been a fabulous feature of the choir, right at the center, singing and signing with great passion and energy!

Hannah’s favourite thing to sing and sign is The Battle Hymn of the Mental Capacity Act. An original composition by the choir, it raises awareness of how to support people like Hannah and Ellie to make informed decisions about their own lives.

Hannah’s decision to help others…

Hannah’s Makaton has greatly improved with the choir, to the point that she has taught lots of signs to family and friends as well as the young kids at a children’s group she volunteers at near her home. She says, “I was reading with them and signing as well.”

Being a member of the choir has given her great confidence in many areas of her life, and the responsibilities that Include encourages its members to take on have been great for Hannah’s self-esteem.

She says; “I’m not just a singer and member, I challenged myself to be a Choir Rep – an organiser and helper for the choir, which I’ve done in lockdown too” Hannah says.

As part of her role she elects the choir’s Star of the Month and ensures the recipient gets the certificate. It’s a role she carries out brilliantly and is very proud of.

“I know who the Star of the Month is this month…but I can’t tell you,” says Hannah, with a big smile! She’s sworn to secrecy until she makes the big announcement, live on air during the Include Choir Online Facebook session. “It takes a lot of thinking,” she says. “I have to think about who’s had it before or not and what they have done recently.”

She did get a Star of the Month herself once – “I got one for being the Choir Rep…but that was ages ago now!” Maybe she’s due another one!

Lockdown living

Hannah has fond and proud memories of performing with The Include Choir at the local Harlequin Theater in Redhill, and a trip up to London to sing the Mental Capacity Act song. That was all before Covid19.

Hannah’s mum Kate is a big Include fan. “It’s really helped Hannah’s understanding and her independence,” she says, “I think it’s brilliant at the moment because all that support is still there through the lockdown, with all the things that Alix has put in place.”

Regarding lockdown Hannah says, “I’m keeping myself busy, which is good, that’s the important thing.”

She’s in a bubble with her parents and enjoys a regular online schedule of activities including a weekly Bollywood dance class and, of course, the choir session on a Wednesday evening and Include’s tea break Saturday morning meet-up on Zoom, which is an opportunity to chat to others about what’s been going on during the week.

However, she’s missing seeing more of her friends and her sisters. “I have seen them but on their doorstep. And I’ve only met up with one of my friends – Ellie.”

Include is very grateful to Hannah for the wonderful contribution she has made and continues to make to Include through the lockdown of 2020. She’s always a star to us!

Penny Sims
Communications and Partnerships Manager

MaryClare’s Story

Meet MaryClare…

“Singing with The Include Choir is a joyful feeling” says choir member MaryClare, who sings and signs with the choir.

Her favourite song is the Bicycle Song , because it has a great tune and words which encourage people to enjoy cycling and being outdoors. I ride my bike every day and often sing this as I pedal along.

MaryClare’s Include Story

MaryClare joined The Include Choir after she saw an advert in her local community center. “I thought it sounded just right for me – I wanted to sing and sign and make new friends.

I first learnt some Makaton signing at Furzefield school in Merstham where I was working. I wanted to keep on learning and practicing Makaton when I went to work at the hospital. And also, I always loved singing!

Joining The Include Choir has taught me new signs, as well as lots of new songs. For me, signing is a way of using my body to express music and the feeling behind it”.

MaryClare has had so many amazing moments with The Include Choir, she finds it difficult to pin down her favourite! Her highlights include singing at community events in the local theater and in the park in Redhill, and doing inclusive communication workshops at Parallel London. “It was great as people were joining in and there was a great sense of community”, she says.

“I am proud of the choir and I’m always telling people about it! My parents are also big The Include Choir fans! They have attended lots of the choir’s performances and always watch the Facebook and YouTube videos, they love them!”

Why is The Include Choir special?

MaryClare says that The Include Choir has taught her the value of total communication, which is communication that uses things like facial expression, hands, body language and signing, as well as words.

“The Include Choir is good for broadening people’s horizons, and extending their social circles. And it is important for people with learning disabilities and people without learning disabilities to form friendships and learn respect for each other as this creates a better community. The Include Choir helps people to do this” she says.

“What makes the Include choir so special to me is the people. We are all together and everybody’s opinions and feelings are valued.”

How Covid-19 changed things

MaryClare is impressed with how the choir has kept going through the lockdown, even when they haven’t been able to meet up with each other. “There are so many members who used to come to the in-person choir practices and events, who now take part in the Facebook live sessions or the Zoom sessions.

With Include Choir sessions now happening on lots of different days and online means there are more opportunities for more people to take part, as they can do it from the safety and comfort of their own home. We’ve even had people join us from very far away from our original base in Surrey – places like Scotland, Wigan and South Africa!”

MaryClare also says; “Although it is wonderful to stay connected and to be able to sing online, nothing beats being able to sing together and to chat and see everyone in person.”

Final word from MaryClare

“The Include choir includes everybody, it is such an inclusive place to be for people with and without learning disabilities. The use of singing and signing, with support workers and volunteers brings everyone together on an equal footing.

More people should join the Include Choir because it’s really important that people know Makaton signs, even if it’s just a few.

The choir is so brilliant; I want more people to come so they can benefit and join in!”

Penny Sims
Communications and Partnerships Manager

David’s Story

David sings and plays percussion with The Include Choir. His favourite song is Somewhere Over the Rainbow.

He loves the enthusiasm of the choir and says; “It makes me feel good – the people are what makes The Include Choir special”.

His Include story…

Since joining The Include Choir David has learnt to play the cajón – a box shaped procession instrument after he got one for Christmas a couple of years ago.

David joined The Include Choir in June 2016 after a recommendation from one of his support workers, Julie. He already knew he loved music and sung in the choir at his church. And he liked the idea of meeting new people, including some people with learning disabilities.

David’s best experience with The Include Choir so far was going to the Mini & BMW factory in Oxford. The choir traveled there by minibus and performed at an Empowerment Conference for Oxfordshire. There was an opportunity to walk around the museum afterwards. The event organiser loved it too, she told the choir; ‘I wish you every success in the future, the Include Choir are truly amazing’!

Saying connected through Covid19

During lockdown David has not been able to sing at church or in person with The Include Choir. But he has linked-up with the choir on Facebook and Zoom – he says that it’s felt good to keep that connection and routine. He hasn’t been able to do much else during lockdown and really looks forward to the weekly sessions.

David joins the choir’s “Tea Break” socials on Zoom on Saturday mornings. He likes hearing what other people are doing and sharing his own news and views. And he really looks forward to the weekly Facebook Live sessions and joins in with the wide variety of songs.

David’s Dad says “We, as parents, are very grateful to The Include Choir for supporting and encouraging David over the difficult time we have all had over during the lockdown period. The Include Choir has enabled David to show and develop his talents at singing and playing”.

Even when he and his family were on holiday at a campsite in Cambridgeshire, David joined the Facebook Live session via his iPad and used the camper van’s grill pan as improvised percussion!

David and his family have learnt a lot about about recordings during lockdown so David can contribute to the choir’s weekly songs (shared on YouTube ) about the Makaton sign of the week – they even bought a new microphone!

The Bicycle Song!! **https://youtu.be/y79rDhdBpFA**

Final word from David…

“People should watch the choir’s videos on YouTube or join the Facebook session to get a really good idea about the choir and see if they would like to join us”.

Penny Sims
Communications and Partnerships Manager

Sarah and Jay’s Story

Meet Sarah and Jay

Sarah started as a singer and became a volunteer. Sarah loves the song Help by The Beetles. And Jay’s favourite is Don’t worry by Bob Marley. Jay plays percussion and sings.

Sarah said; “I also love our choir’s Kind Communication song as it tells people what we are all about.

For example, if people are talking to someone who is deaf or non-verbal, the song reminds them not to talk to the person behind or next to them – talk to the disabled person directly, otherwise it is not fair.”

Jay agrees; “The Kind Communication song reminds people not to judge a person on first impressions, but rather talk to them, make time for them and try to understand them.”

Their Include story…

Sarah first found out about The Include Choir through Facebook. She read about how Alix, a speech and language therapist, wanted everyone to be included…so she set up the choir for people without and with disabilities.

As Sarah says; “It’s called The Include Choir because it is just inclusive to everyone, there is no right or no wrong, everyone is the same in their different ways.

I was really nervous when I first started but another member Mary Clare took me under her wing and I was all okay. And if I’m ever down Nicola, one of the volunteers, will talk to me and cheer me up. I’d say to anyone that is thinking of joining the choir – don’t worry – give it a go!”

Sarah told Jay about the choir; “Sarah told me I would enjoy it. I can practice my singing, sign language, meet new people and just have a laugh! It also works well with supporting my speech…

…And (before Coronavirus) it meant I could spend time with Sarah outside of the house we live in”! Says Jay.

It might be time to reveal that Sarah and Jay have become a couple.

One of Sarah and Jay’s favourite Include Choir moments (and the favourite moment of many other members too) was them telling everyone in the choir that they had got engaged!

Saying connected through Covid19

“The Include Choir’s online activities during coronavirus help people who have mental health needs, use sign language or are on their own. The choir is a place they can come to spend time with other supportive people.” Says Jay.

I linked up with the choir during lockdown on Zoom and Facebook Lives. Communicating with the choir during lockdown gives me something to do during the day, especially if Sarah is not around, I have something I can focus on. And it is good seeing everyone else doing the same thing.”

Sarah agrees; “What’s nice is we can still communicate with people – it is just a bit different. We still celebrate people’s birthdays and sing Happy Birthday to them. I would feel quite down if we didn’t have Include in lockdown. I am not too bad at the moment as I can go to work – but the choir has kept me going before.” Says Sarah.

During the national lockdown earlier this year Sarah started an amazing initiative. She came up with an idea for The Include Choir to record a song to say Thank You to the NHS and other Key Workers. Click here to listen to the Thank You Key workers Song.

The choir sang and signed Jay’s favourite song “Don’t Worry” and it was shared online and even entered into a virtual talent competition! It gave the choir and the community a real boost.

Despite all the successes, Sarah has one eye on the future; “It was great when we could perform together – fingers crossed we can get back to it. It is a shame with Coronavirus. Online its good, but not the same.”

Final word from Sarah & Jay…

“The Include Choir helps us to help others…

The singing and signing are really helpful when communicating with people who are non-verbal. Says Sarah. We have a few people where Jay and I live who have brain injuries and are non-verbal and we can communicate with them. I show one of the boys our Include Choir videos and he loves it – we can make him happy and included by showing him Include Choir songs.

It helps me to communicate better at work too. I work with pre-school age children. I play with them, change their nappies, talk to them, feed them, keep them safe…and of course I can sing and sign with them!

When the community see us perform, I’m proud that we’re representing the choir and educating audiences about things like the Mental Capacity Act and how to support people like me who might have anxiety.”

Jay sums up; “Have a listen to us on YouTube and watch how we perform, that way you can learn about inclusive communication and perhaps donate some money to help us keep going?”

Penny Sims
Communications and Partnerships Manager

Pandemic – a path to parity?

How are you?

The world feels alien to lots of people right now.

Covid 19 affects everyone in some way, no matter who you are, where you live, what you normally do, your beliefs, your status in society – Covid 19 doesn’t care about any of that.

And so, in some ways this p andemic brings parity. Living with unprecedented restrictions right across society puts us all in the same boat.

Okay, there are still differences. Some people are out on the deck toiling away as the storm hits us, some are upfront navigating a path through the chaos, some confined to the sickbay, some making sure passengers are still fed and entertained, some hiding away in their cabin. But basically, we are in this together. We are all being thrown about by unfamiliar and unpredictable forces. No one is in their comfort zone.

People with Special Educational Needs and Disabilities (SEND) are pretty much always weathering a storm. And other marginalised groups too – the elderly for example – always trying to make sense of a world that communicates so differently to what they knew. The usual world order does not necessarily offer them a welcoming place in which to live and interact.

For these people can the pandemic bring some parity and increased understanding? And if so, what long-lasting changes can society make to sustain the positive aspects of this moment of clarity?

I have one neurotypical (standard) son and one who has a blend of SEND. Guess who is struggling the most during the lockdown? It’s the neurotypical one.

What I’ve noticed is other people now facing some of the struggles my son with SEND regularly faces. He is never really in his comfort zone, so the surreal Covid 19 world doesn’t feel too distant from his usual world.

For example, he can find conventional verbal and/or physical greetings or goodbyes quite difficult. He can feel especially awkward and unsure of what to do if he sees people he knows out of the usual context. But now nearly all of us feel this. Almost everything and everyone is out of its usual context. Many people are only truly comfortable at home. And most feel awkward about how we greet each other if we do see someone, even people we know well.

Then we look at strangers on the street when we go out for our daily exercise and we can’t tell by looking at their faces if they are a threat to us. Covid 19 doesn’t show itself in facial expression. And so, without that knowledge, we may feel anxious. We may not find the time to smile at people because our mind may be in a heightened state of alert. Are we 2 meters away, should we cross the road, should we walk faster? These kinds of thoughts can be overwhelming.

Busy thoughts are quite common amongst people with autism and anxiety. They may not know how to interpret facial expressions, they might feel threatened, and may not smile reciprocally – it doesn’t mean they are not thinking about you or wanting to connect with you. But they are sometimes overwhelmed by other sensations and distractions. Covid 19 has given us all an insight into this. People are turning to more virtual interactions during lockdown – the online world can seem more manageable than the real one. This is something many people with SEND can relate to.

An ex-colleague of mine recently wrote this on LinkedIn:

And this too reminds me of how the autistic mind can work. There can be a tendency to take things literally – asking questions to which they want a truthful answer, and giving honest and detailed answers themselves. So that ubiquitous and sometimes empty “how are you?” statement we so often make, and barely listen for the reply…well, that doesn’t really work for the autistic person! They might think you actually want to hear how they are! And who can blame them – surely they have got it right? They are genuine.

Here again, Covid 19 brings some parity. These days when we say “How are you”, guess what – we might actually mean it, and we probably even want to hear a truthful answer! And when I sign off this blog with ‘take care’ – I really mean that too.

Here’s a thought…once this storm subsides, we could continue to look out for our shipmates and hang onto the increased understanding, sincerity and parity we are experiencing now

‘Music is the most inclusive form of communication there is. The Include Choir sums up with a song‘

Take care.

Penny Sims
Communications and Partnerships Manager