equality | Include.org

There is no magic wand!

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! 

The Include Run Reigate fundraiser is still going. Please donate here: Team fundraiser – Run Reigate Include.org Team (peoplesfundraising.com)

Penny Sims
Penny Sims
Inclusive Communications Manager

The Run Reigate Journey

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.

Find out more here .

Penny Sims
Penny Sims
Inclusive Communications Manager

How has life changed for people with learning disabilities?

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.

Here is the link to our audio version https://soundcloud.com/user-683393051-385203358/platinum-jubilee-special?utm_source=clipboard&utm_medium=text&utm_campaign=social_sharing

But it might shock you too.

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.

Penny Sims
Penny Sims
Inclusive Communications Manager

Not just a Choir

Include Choir member Joss shares his thoughts…

“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.

Penny Sims
Penny Sims
Inclusive Communications Manager

Shared Lives – Singing and Signing together

Mandy and Michelle are members of The Include Choir.

Mandy is Michelle’s Shared Lives carer. The Shared Lives scheme matches adults who need care with someone who can provide support. Family and community life are a shared experience for both.

Michelle and Mandy joined The Include Choir over two years ago. Before the pandemic.

Mandy says, “When we could return to choir in person earlier this year, I was unsure about how Michelle would react.

I told her just before we were to leave. She leapt from her seat shouting “choir!” She then sang the Include Choir welcome song at the top of her voice before rushing to get her coat and shoes.

She was beyond happy to return and so pleased to see everyone.

She loves to perform and being part of include provides her with a safe, friendly space to do this.

The use of inclusive communication, structure and positivity make include choir a place she can make sense of which in turn gives her confidence and comfort. 

Include has really helped Michelle and myself to remember to use our Makaton and props to communicate with each other. It has given her such a great outlet to perform and feel successful.

The structure of sessions and inclusive communication has definitely improved her listening skills too. 

Small charities like Include.org are the heart of the disabled community. They provide a positive, happy, inclusive place for people to be.

The work that Include does to promote rights, understanding and inclusion is something that is amazing to be a part of.

To see people’s smiles when they see the choir perform is so moving and making people with disabilities visible in such a positive and empowering way is just what society needs. “

Penny Sims
Penny Sims
Inclusive Communications Manager

Welcome to our World

For World Kindness Day 2021 (13th November) we’re doing 5 things!

1)   Thanking our amazingly kind volunteers and supporters.

2)  Giving away a FREE Easy Read resource that explains how to be a Kind (Inclusive) Communicator:

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.”

In My World highlights the benefits of being willing to join other people “in their world”. That’s what we mean by Inclusive or Kind Communication. Being willing to adjust ourselves in order to properly connect with someone else.

Penny Sims
Penny Sims
Inclusive Communications Manager

What is Racism?

Our volunteers Hannah (below) and Sofia worked together to create an Easy Read resource about racism.

Earlier this month we were able to share this Easy Read resource about racism with John Barnes! “Wow!” says Hannah, “Who knew at the beginning of making this resource that John Barnes would be holding it?”

John Barnes is also keen to ensure that this important topic is made accessible to all. His new book The Uncomfortable Truth about Racism is available as an audio book here: https://www.audible.co.uk/pd/The-Uncomfortable-Truth-About-Racism-Audiobook/1472290410

Our own FREE resource about racism is also available here in audio format via the include.org soundcloud

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”.

(source: https://www.ethnicity-facts-figures.service.gov.uk/health/mental-health/adults-using-nhs-funded-mental-health-and-learning-disability-services/latest)

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.”

Helpful Resources

Easy Read Equality Act: https://www.mencap.org.uk/sites/default/files/2018-02/Equality%20Act%20-%20Easy%20Read.pdf

Black Lives Matter resources, including activists telling their stories: https://blacklivesmatter.com/resources/

An article on the experience of being black and having a learning disability: https://www.mencap.org.uk/blog/black-history-month-chriss-story

John Barnes’ book The Uncomfortable Truth about Racism is also available as an audio book here: https://www.audible.co.uk/pd/The-Uncomfortable-Truth-About-Racism-Audiobook/1472290410

And of course Hannah and Sofia’s Include Easy Read about Racism: https://include.org/wp-content/uploads/2021/10/What-is-Racism-Include.org-Easy-Read.pdf also available as audio here: on the include.org soundcloud

Penny Sims
Penny Sims
Inclusive Communications Manager
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