Sarah joined Include in 2017. In the time between then and now Sarah has moved home a few times, navigated Covid and had hospital stays. Throughout all the changes and challenges Sarah has remained loyal to Include.
She is very thoughtful and brings so much to the charity – we are delighted to share what she has to say about Include and her role:
How Include Makes Me Feel
” Being part of Include helps me to be myself.
And it makes me feel proud and relaxes me.
When I come to The Include Choir, I feel listened to. There are people with and without disabilities and we all help each other. Together we raise awareness of communication needs. I am proud when my Support Worker joins in with the singing and Makaton signing.
The volunteers are great too – they set up and make it all run smoothly – they are non-stop like Alix – our Director! Alix is so good.
Singing makes me happy – even if I can’t get to choir one week I will join-in on Zoom.
Getting The Community Involved
The Mayor of Reigate & Banstead knows us – he likes our charity. He helps us get more empowerment and open it up to more people. At the Banstead Christmas lights switch-on he wouldn’t let The Include Choir leave! He just felt we were popular with the crowds.
At concerts and performances people in the audience ask questions and I like explaining about Include and telling them how I feel about it. I also like when the people watching join-in. When we performed in The Belfry shopping centre there was a kid who was blind dancing along with us.
I am Choir Rep for our new Epsom Include Choir. I would say to anyone; “come along – there is cake, it is fun and everyone is helpful.”
Part of the Decision-Making
My favourite song is the MCA (Mental Capacity Act) song. Choir members help to write the songs. I helped to write one about Covid too. Our songs are our own versions – with the words expressing our feelings and what’s best for us from our point of view.
I use Zoom to be part of the Include.org Steering Group and the Include Champions Group. It is really, really good to be involved with Include – when I’m part of these meetings I feel more involved. I am part of the decision-making and that makes me feel included.”
Communications and Partnerships Manager
Last month we ran our first ever in person fundraising quiz!
In lockdown we hosted one on Zoom but this time it was in a lovely setting – The Old Council Chamber in Reigate.
Being Include.org this was not a standard quiz. It was an inclusive one.
What helps to make a quiz inclusive you may ask? Well…here are a few things we did…
Role Model Hosting by Ciara
Although the Mayor of Reigate and Banstead was ‘host’ in that he invited us to use the Town Hall venue, he took a seat with one of the quiz teams on the night, and the quiz was presented by our Patron Ciara Lawrence.
Ciara recently spoke on our first ever Podcast and made it clear that as a person with a disability she is on a mission to ensure more of the world sees people like her for who they are and what they can do.
Well, we now know for sure…Ciara can brilliantly host a quiz evening, engaging a whole room of people with authority, style and warmth!
Something for everyone
People played in teams and we had a real mix of rounds and formats which all played to different people’s sensory strengths:
Hearing – Name the song
Signing – What does the Makaton gesture mean
Taste and smell – Guess the crisp flavour
Touch – Identify the household item hidden inside the sock
Sight – Work out what the items are that we photographed very close up / micro
General Knowledge – Answer audio / video questions from supporters like TV’s Dan Walker, Marcus Ramtohul (also in our first Podcast) DJ SUAT and Cllr Jonathan Essex
There is always more to be done in terms of inclusion. But we did our best with limited resources and we were delighted that the team that won The Include Quiz was a mixed group of people – some of whom only met each other that night. Meeting new people is not always easy for people with communication needs, so that in itself was a big win.
This team, called “The Team That Shall Not Be Named”, included volunteers, choir members and parents. There were people with autism and visual impairment, playing alongside people without additional needs. There were volunteers who have literally just joined Include working alongside members who have been around for years.
We know that there was a team with regular quiz winners in it who were defeated on this night. But this was not a regular quiz!
So that’s a win in our book.
Want to make your own event inclusive?
If you want to host an inclusive event why not speak to The Include Champions Group to get their ideas and tips based on their lived experience of being a person with a communication need and/or disability? Enquiries to firstname.lastname@example.org
Communications and Partnerships Manager
I first found out about The Include Choir by word of mouth, from my friend Hannah. She recommended it to me because she knows I enjoy fun things and singing takes your mind off your worries.
When I came along, I found that everyone is very friendly, this group does not separate out one type of person from another.
If people have autism or mental health needs etc they are accepted. Everyone is accepted for who they are.
I decided to Run Reigate to represent Include.org and help raise money for the charity and its work. It is the first time I have done a race to raise money.
My journey to doing this half marathon was a long one! It has taken me a few years to get here.
There is no magic wand – I had to put the graft in!
I was very good at running when I was in college, but I stopped doing it and wasn’t even able to do a 5K at first. What got me back into running was seeing my friends Tina and Andrew, who I met at the Prospero Theatre group, doing so much running. Tina did the London Marathon and Andrew is training to do an Ultra marathon which is 50miles and also a 100mile race – they have inspired me and helped to coach me.
Once I could do a 5K comfortably, I gradually built up from there to a 6K and 7K and so on. Over the last 2 or 3 years I have got better and better at it. It goes to show that if your body is healthy enough you can do it.
I will never be like Mo Farah winning gold – but I still love it and for me it’s more about the journey than getting a gold medal.
Run Reigate was actually my 3rd half marathon! I did Denbies and Woldingham, and for those I had never run that far before (and not with so many hills), but once I got to 12 miles I just pushed myself that extra bit to get to the end.
I feel I haven’t achieved a lot since my college days – but I was ready to take on my next challenge and fundraising for a great cause like Include.org has made me feel like I have achieved a lot. It is a super feeling to help the choir – not just running for myself.
The day of Run Reigate didn’t go completely smoothly for me! I was going to get a lift there but the person who offered forgot and so I was then running late and had to drive myself there. I was still in Redhill at 9am and my race started at 9.15am in Reigate! When I finally arrived, I had to jump over the railings to get to the start line on time! I had my backpack on too – but it had my water in it and I knew I would be glad to have that.
There was a good vibe at Run Reigate. I enjoyed seeing everyone – some people also running spoke to me. They reassured me when I had to stop for a comfort break that I wasn’t the only one to need to do that!
It’s not just the running but the people, the stalls, the music – that’s the reward after the run!
The weather was also good and I enjoyed exploring parts of the countryside of Reigate and Horley that I wouldn’t normally see.
And finally, it was great to see the finish line ahead!
On 27 July some of The Include Choir went along to the Run Reigate Run Club in Priory Park – led by Jas Dhanda from Reigate Priory Athletic Club.
While the runners were put through their paces, we sang and signed some running themed songs like Don’t Stop me Now.
Seeing the runners prepare mentally as well as physically took me back to my 2019 Run Reigate journey. It was before the world-changing events of Covid19, but after some fairly significant events in my own life.
It was the first time I had run more than a few kilometres since breaking my back and neck.
In 2010 I fractured my spine in 7 places, and broke my shoulder, hip and hand when somebody opened their car door into the road as I was approaching on my motorbike.
Thanks to a good quality bike helmet I was incredibly lucky to avoid a brain injury.
When I think how close I came to experiencing the sorts of understanding or speaking difficulties that Include.org tries to tackle, I get a shiver down my (now mended) spine.
I spent 3 months in a rigid brace and it was another 6 months before I could return to work.
If someone had told me then that I would complete Run Reigate’s 10k run, I would have thought they were joking!
I felt so lucky to be able to take part.
At Parallel London in 2017 one of our members David not only performed with The Include Choir, singing and playing the drum – he also got the team’s fastest time at the event’s sensory 1k.
David has a visual impairment – but this didn’t affect his speed! This event, held at the Olympic Park in London, was a real memory maker for David and many of the rest of us.
Memories made for all the right reasons – feeling involved and able to shine.
We’re going to talk more with the Run Reigate organisers to look into the idea of a fully accessible sensory race in the future.
It’s not that everyone wants to aim for the longest distance, or the fastest time that makes events like Run Reigate or Parallel London truly bonding for the community. It’s creating a space for all the personal magic moments that happen along the way.
Sometimes these moments begin months before the day itself…
…The encouraging chat with a friend to enter, the training partner who meets for a morning run in the rain, facing a personal fear or anxiety, overcoming an injury, generous donations to a cause you care about, a way of remembering or honouring someone dear, being boosted by a cheer from the crowds, being offered a jelly baby by a random resident of one of the streets.
On the evening of the Run Reigate Run Club, a magic moment for me was when choir members Hannah and Lynette led the choir, while I turned around to include the runners in “Don’t Stop Me Now”.
In turn, the runners themselves joined in with enthusiasm, even after their gruelling training session!
On Sunday 18th September Include.org will help to create some magic moments at Run Reigate.
We have a stall in the event village, our inclusive choir will perform and we’ll raise awareness of inclusivity. Thank you to everyone who is already onboard.
If you are local, but not involved yet, could you help or just come and support us? Please let us know.
We can offer reduced fee places to runners who would like to raise money for our charity, and we’re hugely grateful for all fundraising efforts.
This month, between the Platinum Jubilee and Learning Disability Week 2022, our Champions Group has been reflecting on how life has changed for people with learning disabilities during the Queen’s reign.
We also talked about what was going on for the royal family in each decade, memorable moments like when people walked on the moon – and chose a favourite song from each decade (like Don’t Stop Me Now from the 1970s). So, we hope this Easy Read will inspire you in many ways.
It’s hard to believe that in the 1950s, when Queen Elizabeth II first came to the throne it was common for children with learning disabilities to leave their families to live in ‘long-stay hospitals’ and attending school was not an option.
The Include Champions believe that access to education for all is important. Philip said that it was down to going to school that he has been able to get a job. David said he learned to speak French at college and Hannah cooks her own meals having learned in education. Three great examples.
People Making Change Happen
We celebrated some of the people who really helped to turn the tide and change the way society looks at disability.
Some of the first research into what is actually best for children with Learning Disabilities didn’t happen until 1950s! Joss rightly found this surprising “Are you joking?! That was the first piece of research ever to have been done?!”
In 1958 Professor Jack Tizard published his findings – the headline – children with Learning Disabilities should not be taken away from their families and would live better lives in the community.
Then in 1964, the Jean Vanier invited two men with learning disabilities to live in his home rather than in a hospital – the first L’Arche Community home was set up in France. This paved the way for many more people with learning disabilities to return to the heart of their communities. Of Jean Vanier, Joss said “What a great bloke!”
Everyone Can Make A Change
We also talked about how in day-to-day life it’s sadly not just the people who do good things that we remember – we also often remember bad things that people say to us. The Champions Group started talking about how important it is to try to use words that are kind and respectful when talking about people, especially in the context of disability.
All that matters is that we are here and we are thinking about each other and we care.
Hannah summed the conversation up so well… “All people have different abilities anyway. We are all different. It doesn’t matter what we are, it doesn’t have to be perfect or anything, all that matters is that we are here and we are thinking about each other and we care and, plus we need to think about this really carefully.”
And that my friends, is inspiration for a future Easy Read about why words matter.
Communications and Partnerships Manager
“I have been part of other choirs, and they tried and were nice – but it wasn’t like coming to Include. They weren’t doing anything particularly offensive, Include is just better!
Include people say “Hello” and treat me like my best friends treat me. We can be complete strangers – but when I’m around them, I feel I can walk.
I only get that feeling from my very, very, very close, and I mean very close friends.
Elsewhere, especially in the outside world, it’s not very like that. I just want to be with the Include guys every single day because they are accepting of me. Include are family to me.
Include is not just a choir – it’s not just saying right we are choir, join us, tick in the box and that’s it.
Include Choir and Alix decide day by day we’re actively going to include every single one of these people who are less included, and take the people who are totally on the margins of society and say look come and sing with us, you are not different in this room.
The D Word
I don’t look at myself as disabled.
Places like Include and people like Alix are just wonderful, they don’t see your disability. The Include Choir focus on the fact you can sing!
If you ask Alix about who Joss is she will say something like, “He is pretty good on a drum, he can talk the hind legs off a donkey, but I completely ignore the fact that he is disabled.”
I think about 90% of society you ask might say, “this kid is disabled” and only about 3% go “Actually he is a really nice guy,” and they don’t look at me as disabled.
Some people think that to understand me they have to put this costume or label on me, “This guy is disabled.” And it’s not until you throw it off yourself – you throw it off your body and you say look I am able – they have a moment when they just stop and they go, “Ah – he is a nice guy!” And that moment of realisation is the most beautiful thing, and I can see it happen all the time. From that day on they will never call me disabled again – which is really beautiful.
Teaching the World…
That fact that The Include Choir performs in public places is really something big.
By doing that we’re actively teaching the world that we are all the same, we are just made from slightly different clay – we are not really that different to each other – we all have faces, we all live on the same planet etc.
People at the college I go to know that just because you’re disabled it, doesn’t mean you can’t do X, Y and Z or you can’t live your life. But my college is in the middle of nowhere, so no one really knows about us and what we can do.
Include takes that one step further because it puts people like me in front of able-bodied people and goes, “Look this is what Joss can do,” and they go “Wow, he can do that, he is in a wheelchair.” And they put the two together and it changes their lives because they realise that, even though I’m ‘disabled’ I can do a whole load of things that they can do.
On My Terms
Someone at my college recently asked me “What do you think about the term disabled?” I thought for a very long time and eventually I said, “It’s not me that gives me the term disabled, it’s society”. This resulted in an hour-long conversation about the term disability not being helpful. I would wipe that term out.
There are not many words that genuinely offend me, any swear word genuinely won’t offend me and won’t hurt me, but the term disabled does. It cuts me like a knife every time I hear it and it f***ing devastates me because it’s like, “stop putting me down, and raise me up”!
So, I have stopped calling myself disabled and there are people where I live that might say differently-abled and I prefer that – it doesn’t chop off my legs. It says that your legs move in a slightly different way and let’s be open and accepting of that.
Bigger Than Acceptance
Include has really helped me because I have enormous amounts of frustration and incredible bouts of anger that seem to come out of nowhere because I have to have carers all of the time. At college I have about three carers.
At Include I have only really got one, Steven and that’s it. When Steven sits with the choir and joins in it feels like family and it feels like acceptance.
It’s almost bigger than acceptance – Include Choir feels rather more than a single person accepting my disability, it’s like getting a whole room of people to accept my disability all at once, all over the world and yet it’s in an hour-long choir session with an interval!
Sing it from the rooftops
People like me don’t have many chances to walk – but singing is like walking. I am very grateful.
Include songs are f***ing brilliant, genuine from the heart with powerful messages. “In My World” is so beautiful it really is, and every time I hear it, it elicits more of a response from me, I don’t know why and I don’t think I will ever know why! It’s a statement for mankind.
I also like “Kind Communication” – because it’s explaining what I have been talking about – I think people need to hear these songs in places other than YouTube. I think they should be on Spotify.
Eventually, I hope that there will be an Include Choir in every country because its attitude is so welcoming. If there were other Include Choirs it would be a better place, more peaceful with less segregation.
I don’t like segregation or war; I am a peaceful man. We need an Include Choir everywhere we can get one because it brings peace to the world.”
The good news Joss, is that this summer we will be starting up another Include Choir…watch this space.
Communications and Partnerships Manager
The National Learning Disabilities Awards celebrate excellence in the support for people with learning disabilities. The Breaking Down BarriersAward celebrates organisations who have worked to make sure people get clear information and are able to contribute their videos and experiences