“I found out about Include from a leaflet I took when I was at The Grange. I wanted to meet new people and I already liked singing and I did Makaton signing too.”
“I’ve found lots of good things to do with Include. I do the Stroll and Sign walks, and nearly all the choir events. Singing and signing and volunteering as Deputy Choir Rep for The Include Choir in Epsom,” says Amelia.
How far would you go for Include?
Maria (Amelia’s Mum) says; “It’s over an hour to go to Include sessions (and over an hour back!), but Amelia loves it so much that we travel from where we live to go to Include. We wait until it’s finished and then drive home again. We are looking to move house and one of the factors in our decision of where to live is access to Include. We want to be closer!”
Amelia is taking part in Run Reigate on 22nd September to raise funds for Include. Maria says; “She loves that kind of stuff – and she is doing this mainly because she wants to raise money for Include.” She will be doing a Half Marathon – 13 miles. “She is quite fit and athletic – she is always running about with football, cricket all sorts. She has all the stamina and energy she needs!”
Ameila says; “I am looking forward to running the half marathon.”
That’s a lot of miles for Include in one way or another.
Why does Include matter to Ameila?
“She always tells everyone about Include – “please come along, or please sponsor me” – she tells everyone how wonderful it is – she loves it basically,” says Maria.
“My favourite thing so far was going to Wisley for a Stroll and Sign walk. I like nature, everything about it – and walking – being active with other people. I like the exercise and it’s good for my wellbeing and mental health,” says Amelia.
Maria adds; “There is generally less on in the holidays, so to go on an Include Zoom or walk at Wisley in the holidays means a lot. In term-time too, when she comes home from Choir on Tuesday nights or from one of the weekend walks – she is always really happy. She is quite inquisitive and comes afterwards and says I saw this and I saw that.
Amelia sums it up; “Include makes me happy – I’m excited for Tuesdays to go to choir. I can’t wait to go back after the holidays.”
Making us blush!
“The Stroll and Signs are great – and the singing and signing it’s the unique mix that Include offers – it’s quite diverse,” Maria says.
“Alix is a nice person, she talks to me. And the volunteers help a lot too,” says Amelia.
Mum adds; “Alix is amazing. She wants to always help people – she is so giving – an amazing person. And thank you to the volunteers too for supporting Amelia – everyone is so amazing – it’s a big friendly lovely environment.”
The fun and learning keeps going…
“I sing the songs and sign sometimes and teach them to my mum.”
“Yes, Ameila never forgets about what she does with Include – it’s always on her mind.”
Sponsor Ameila for her Half Marathon:
Help Amelia and Include to keep going! Here is the link to her fundraising page if you can donate anything at all, it will be hugely appreciated:
The Include Champions group worked with Folusho from Liberty – the human rights organisation – to make Easy Read information available to all.
The topic was Talking to The Police. We asked Folusho to tell us about this collaboration from her perspective.
What’s your mission?
I work for the Advice and Information Team at Liberty, a human rights organisation. The Advice and Information team’s mission is to help people understand their human rights. We do this by answering questions people send to us about their human rights through our helpline and written advice service. We also publish online articles about people’s rights, and deliver training to community groups.
The law is complex and tricky to understand so we try to break down topics to be as simple as possible.
We realised that we needed to make our information more accessible. Some people find it hard to read and understand things. Some people are still learning English.
We don’t want these people to be missed out. Human rights are for everyone!
Why did you reach out to Include and decide to work with The Champions?
We wanted to create a resource to explain that you don’t always have to speak to the police. This was a tricky topic to explain, because there are many ‘if this, then that’ scenarios in this area of law.
We had written some information, but we felt we had some gaps in our knowledge on accessible writing. We know that many people find it hard to read long blocks of text.
I researched Easy Read, and I learned that it’s a way to use pictures and short sentences to set out information. I wanted to give it a go, but have it checked by professionals to make sure the resource was as useful and accessible as possible.
I really wanted an Easy Read provider who worked with people who use Easy Read – and Include was perfect. The Champions group is made up of people who use Easy Read themselves. They give feedback on drafts and help shape the resource.
I wanted a true collaborative approach through co-production. I knew Include would be a great fit because of their amazing work around accessibility.
What did you discover from meeting The Champions and being part of the Easy Read process?
I met the Champions on Zoom, and we went through what I wrote. They told me their thoughts: what was easy to understand, and what needed rephrasing.
Their questions prompted me to deeply think about the law, which can be unclear sometimes.
The Champions helped me explain this ambiguity as simply as possible, which also made me refine my own understanding.
Claudia, Alix and Penny all taught me things too. I learned about repetition, and working memory, and I use in all my writing going forward.
How is the Easy Read being used? What hopes do you have for it’s impact?
Its only been out for a short time, but we hope to send this resource to many different groups. We didn’t just send it to disability focused groups – but any group that does community organising, across a range of different backgrounds and walks of life.
Easy Read is accessible to a wide range of people. As well as disabled people and non-English speakers, there are lots of people who benefit from this – people who are quickly scrolling on the tube, people who need to remember key information quickly.
I hope Easy Read makes people feel more confident knowing their rights. They might find it easier to remember since the pictures are there too.
I also hope it makes people think, “How can I make this information easier for more people to understand?” and be creative.
What is your personal take-way from this collaboration?
Accessibility is so important and there is always more to learn. People’s brains work in different ways. Instead of looking at this as a difficulty, I now embrace it as a challenge.
I now say to myself, “Can I break this topic down even further? What exactly does this word mean, and can I use a simpler one? Would I remember this in a stressful situation?” If my answer is no, I go back to the drawing board and try to address these issues.
I have become more flexible and open to my ideas changing in light of new information. I’m glad Alix and her team were honest about what didn’t work, because hopefully that means more people find the resource useful!
For people who are considering using Easy Read – do it! The value of these sessions have gone far beyond the initial resource and I am very grateful to Include.
For me this is Run Reigate number 3 and once again I am delighted to be running for the amazing charity, Include. There is one small change though. Having run the 10km race for the last 2 years, this year I have decided to challenge myself to the half marathon distance.
‘Leveling up’ seemed like a good idea at the time, but as I write this the reality is hitting home that a half marathon is precisely 11.1km further than my usual 10km. Hardly an insignificant increase!
Although the increase in distance is significant and will undoubtedly require some extra training, I don’t mind at all. In truth I think it’s a tiny sacrifice to support Include and the important work they do in our local community to ensure people with communication difficulties aren’t excluded from our society.
Personal motivation
For me this is a cause that feels quite personal. As the father of 2 boys, Josh and Ben, who struggle with communication difficulties (more from them in a minute) I see daily the issues they face.
Whether it’s being talked over by people who don’t want to wait for their responses or excluded altogether it’s something you never get used to seeing, and quite simply it’s not something I want for their future.
Here’s the thing. The fact that they can’t communicate in the traditional format as well as others doesn’t mean that what they’re thinking or want to say is any less valid, and the same is true for everyone with a communication difficulty.
Why run for Include again?
Most of us know that the more we understand others the better life gets, not just for them, but for all of us. And that’s why Include is such an important charity to me and why supporting it means so much. Through their work Include breaks down barriers that are created by communication difficulties and helps to ensure that more people feel included.
What Include also does is bring happiness to peoples lives.
Through initiatives such as their Choir and their Stroll and Sign walks they provide fantastic opportunities for all members of our community to get out, be active, socialise and just have fun.
As a sports coach who works exclusively with people with additional needs at PMActive and East Surrey Hawks Football Club I know how important this is. It gives purpose and a sense of belonging, but most importantly it provides a place where people can just be themselves. It’s sounds really simply but that, in a nutshell, is why I’m running for Include again this year.
I love how they help to ensure there is a place for everyone in our society.
Living with a communication difficulty
I promised earlier to share more from Josh and Ben. When writing this blog I asked them how it felt to live with a communication difficulty and why inclusive organisations like Include are so important. I think their explanations are much better than mine …
Because of my communication difficulty I find it hard talking to people and doing new things, even when I really want to. People like Include, the Hawks and PMActive help me learn new things and get better at sports and other important skills. Josh
Having a communication difficulty makes it hard to explain what I’m thinking and that means things like going to the shops can be hard. Places like Include and My football club the East Surrey Hawks help people with disabilities feel safe, included and happy. Ben
Just Giving
If you can support my run with a donation, no matter how big or small, it really would mean so much to Include. It’s a small charity so every penny counts!
Two years before Include.org registered as a charity, people with and without communication needs were already joining together once a week to sing, sign, include and bring the ‘joy and uplift’ that Include has become famous for.
And as you may know (if you are a person of a certain age or have children obsessed with lightsabers), we share our 4th May birthday with Star Wars Day.
So on behalf of all of us at Include.org ‘May the Fourth be with You’.
Groan. As my son would say.
This salutation is an old joke (and a great excuse for a pre-Bank Holiday celebration) but this year, we’ve decided to reflect more deeply on our connection with Star Wars Day and what Star Wars can teach us all about inclusive communication.
More than 1 in 5 people in the UK will experience difficulties with speaking and understanding in their lifetime – and those people will need Inclusive Communication Partners to help them access services, have their needs met, make choices and live a full life.
Being an Inclusive Communication Partner means recognising, respecting and using all forms of communication that people need to understand and express themselves, not just the spoken or written word. It may mean sharing a smile with someone to reassure them you are listening, using Makaton signs for someone who finds it hard to understand speech, even though their hearing is fine. It could mean getting out a pencil and paper to draw what will happen next for someone who is anxious. It could be recognising what that movement and sound means for someone who doesn’t use words or it might mean taking your time so that someone can say what they need to say, even if speech is hard.
At some time in your life, you will have been an Inclusive Communication Partner, and with a little more awareness, we could all make much more of these skills to make the world better for those 1 in 5 with communication needs.
OK – all well and good. But what does this familiar Include message have to do with Star Wars?
Well, without even straying from the original trilogy, we can find some outstanding examples of inclusive communication.
R2D2. So much going on in that electronic circuitry but no speech to communicate with others without the support of polylingual C3PO. C3P0s words explain R2’s feelings and thoughts to others – but we also still know how R2 feels about things when he does an excited little dance, emits a high-pitched, frightened squeak or droops with a low electronic sigh. We all respect and recognise his non-verbal communication too.
And what about Chewbacca? It’s not easy being a Wookie in a human world. Apart from the amount of time it takes for a blow dry, you are reliant on inclusive communication partner Han Solo to interpret your messages- although we can all tell a great deal about how Chewy is feeling from the pitch and inflection of his utterances (and I suspect we would all recognise and respect the body language of an angry Wookie).
We don’t only need to consider non-verbal communication either (though Ewoks and Jawas provide plenty more examples). Where would the Rebel Alliance have been if young Jedis were not capable of interpreting Yoda’s unique use of grammar to make sense of his wisdom. When we accept communication in all its forms, we can truly connect and grow together as Inclusive Communication Partners.
So to help us celebrate Include’s birthday on 4th May, we are asking you to think about how you could include people with communication needs by recognising, respecting and using all forms of communication – from symbols and pictures, to gestures and signs to body language and facial expression.
After all, it is only at the end of Empire Strikes Back, when we finally see Darth Vader’s face that we truly understand and connect with him.
May the Fourth be with you as an Inclusive Communication Partner, this Star Wars Day.
Our birthday hopes and wishes:
A more inclusive world where all forms of communication are welcomed.
People celebrate 8 years with us on Bank Holiday Monday 27th May at Teas on the Green in Brockham, see the choir, sing Happy Birthday to Include and buy tea and cake!
Make a one-off birthday donation to Include.org or set up a regular / monthly donation on 4th of each month to give year-round cheer and help ensure no one is excluded due to communication disabilities or differences.
April is stress awareness month. Many people take this to mean work-related stress – and that is an issue. 1.8 million working people suffering from a work-related illness, of which 875,000 workers suffer work-related stress, depression or anxiety.
The CQC’s state of care report highlights that Social Care Workers are stretched and stressed by lack of resources and high levels of demand.
Meanwhile, among unpaid carers, who are estimated by the UN to meet 75 – 90% of care needs, carer burn out is also real. More than three quarters of all carers (79%) feel stressed or anxious, half (49%) feel depressed, and half (50%) feel lonely.
Communication skills and stress can be related. Sometimes when stressed, our ability to process or produce spoken language is impaired. And if it isn’t easy to communicate or if we are not understood, it is stressful. All of Include’s projects and training aim to build communication bridges, so that this stress is reduced for everyone involved.
We welcome carers and support workers to our projects and they tell us that things like our Stroll and Sign wellbeing walks help them to feel less isolated and less stressed as a carer.
Being in nature with a supportive group boosts everyone’s mental wellbeing.
You can watch our video about How our Stroll and Sign project helps people. Why not come and join us?
Honest Insights
We asked a friend who is a full-time carer to share his experiences of stress and ways to help manage it. Here is what he said:
“I have always used the word stressed and stress for as long as I can remember, I’ve always felt anxiety socially, About everything really, being late, thinking that I need to be doing something better with my life or thinking that something bad might happen. In December 2020 something really bad did happen, my son had a brain tumour removed and then suffered from severe complications that meant that he needed me to be with him all day every day to care and help him to rehabilitate.
So, I learnt that what I was worried about before paled into insignificance compared to this new life. The stress of keeping someone alive 24/7, the stress of making sure they get the right calories, the right water intake, that they don’t have a seizure, they don’t hurt themselves, to try and get them out into social situations when they don’t want to get out of the car, the dread of impending scans and discussions with Drs to know if the tumour comes back, and a million more tiny stress points in the day while trying to operate as a normal family with my wife and daughter as well.
How do I deal with stress? Well, it is there and it won’t go away and most of the time I can handle it with the occasional ‘dummy spit’ where I have to take a few minutes to breathe. I ensure that I exercise at least 3 times a week, playing Football with a team helps as that is a great place to talk to others who are sometimes going through tough times themselves, but also to talk about Football and tactics that our crumbling bodies probably can’t execute come match day. I also go for a walk around the block on evenings where I need to get my thoughts straight.
My son is currently at a Neuro rehab centre in Surrey with a packed schedule of therapy and School sessions, so I am flat out getting him ready, getting tosessions on time, feeding him etc etc, after our first week we reviewed everything with the team here, and one of the key goals of this placement is for me to look after myself. Easier said than done, but very important because if I suffer then everyone suffers. It’s hard to let go, but I’m doing it step by step, and my son is responding well to me taking a step back at times. I’m also finding it really useful to chat to others who are in a similar situation, there is no agenda, we are all in tough situations and can just talk straight to each other. So, another way to manage stress is to speak to others, understand where you can step-back and that you may not be that vital all the time – the World will still turn without you.
It’s difficult to manage stress. Try to find time away from your day to day to do something you enjoy, chat to people wherever you are, walk round the block, maybe get some professional help if you feel ready, listen to your close ones if they say they are worried about you, there’s always some way to solve a part of the problems you are facing.”
Other things that can help
We asked some of our Include Choir members, support workers and volunteers to share how they manage their stress. Here are some examples of what they said:
“I relax by gardening, playing guitar and reading.”
“I like to talk to someone, listen to music or watch a film to cheer me up”
“Headspace and yoga. Listen to music. Exercise.”
“Music”
“Turn off notifications on my phone!”
“Listen to music”
“Go for a drive”
“Deep breathing exercises”
“Take a long bath”
Easy Reads
Our Champions Group (people with lived experience of communication needs) has produced two relevant and helpful Easy Read resources – one about mental wellbeing and the other about physical wellbeing.
What inspires us to help will vary, but there is a common side-effect of helping; you get a boost and feel good yourself!
Two of our Include Champions, Beth and Sarah told us how being a Supported Volunteer (a volunteer with lived experience of communication needs), makes a difference:
Beth says; “Volunteering makes me feel like I have a purpose. It boosts my wellbeing in many ways because it helps me to help others and that is a good feeling that helps not only my mental health but emotional too.”
Sarahsays; “When volunteering in The Include Choir it makes me feel helpful and I’m loving working as a team there. It especially helps me forget everything and volunteering cheers me and builds confidence…
…Also it helps me gain confidence to volunteer with other services too. Just by volunteering I forget what happened and I look forward to coming to choir – I am always the first person to respond to events.”
The Champions have produced a FREE Easy Read on this subject:
We’re so grateful to all of the people who help Include. As a small charity the kindness of others is what enables us to keep going. We have a number of other amazing people who volunteer with us.
You do not even need to be based in Surrey to get involved!
Netavolunteers her skills remotely with Include, helping to edit some of our videos. She says; “Helping Include adds meaning and purpose to my life, fostering a sense of connection and fulfilment. By lending a hand and making a positive impact on someone else’s life, I also uplift my own spirits.”
Charlotte comes in person to weekly Include Choir sessions, she says;
“Volunteering at Include is the highlight of my week. I feel connected and part of a lovely special group. Singing in a safe environment whilst helping others find their personal joy is sooooo uplifting and rewarding. It truly does make me very happy.”
There are many volunteering opportunities, so whether you would like to attend an Include project like the choirs in Redhill or Epsom, help on a wellbeing walk, or edit videos etc, please just let us know info@include.org
Members of the small part time staff team at Include also gain so much from working for the charity. Susi explains; ” When I read the advert for an Assistant Choir Director for Include, it sounded like the dream job for me – to be involved in music and fun and learning and making friends and sharing important messages. I’m so proud to be part of Include and when I attend rehearsals or performances the feeling of joy is palpable. it’s also incredibly inspiring to see the friendships that are made by others.”
How Can Companies help?
In 2023 there were four stand-out organisations that helped us.
Below we share some of the ways companies can, and do help.
Gifting Spaces
As a small charity we work from home and from community buildings rented for a few hours to run our projects. But sometimes we need a space to get together for team planning days and training. Local solicitors Morr & Co kindly allowed us to use the Board Room space in their office in Redhill on several occasions. Thank you.
Mike from Morr & Co says; “We have really enjoyed getting to know the team at Include over the last few years. Supporting the communities in which our team live and work has always been part of our firm’s core values, and providing a space for the Include team to get together or provide training is a really simple way for us to help out”.
Members of the Morr & Co staff team attended Include’s Makaton training (at a discounted price) because of the partnership.
Funding Specific Resources
PowerTutors kindly offered to fund a printed brochure for Include. Naz says; “At Powertutors, we recognise the invaluable contributions of Include in our local community. Their dedication to ensuring no individual faces exclusion due to communication disabilities is commendable. With innovative and thoughtful approaches, Include fosters an environment of inclusivity, empowering everyone to embrace and express their unique voices with confidence. We are proud to support their mission and witness the positive impact it has on enriching lives.”
Sponsored Fundraising
Billy, Max and Kirk from tiling company WB Simpson & Sons’ Head Office in Redhill participated in Ride London on 28 May 2023 to raise money for Include.org.
They raised nearly £1200 and even wore Include branded tops for the ride. Thank you.
Sharing Our Story
Our CEO and one of our choir members have links with a local fitness company BOOSTFit. The company is inclusive, community minded and keen to support charities. As they say on their Instagram bio they offer “A fun workout to heart-pumping popular music leaving you physically & mentally BOOSTed.” Our values were well aligned and they kindly said that they would help with promoting our Big Give fundraiser which raised over £38,000 in one week!
Cassie from BOOSTFit said; “Using our platform to help support Include.org and their Big Give campaign meant we could not only raise awareness and funds, but it opened up conversations between our community too. Our team of instructors spread across the UK and overseas used their own communities to share the story too. It was great to bring together a business and charity and collaborate for such a great cause.”
Follow and share our social media content:
Corporate Volunteering and other help
The funding landscape for charities is very, very challenging now and we’re grateful for the continued interest and support of local businesses in Surrey. If you work for a community-minded organisation please do keep us in mind.
Could you help by:
volunteering at some of our projects?
sharing some of our social media content?
sharing your professional expertise to help us improve?
getting your organisation to consider us for payroll giving?
mentoring one of our Supported Volunteers (people with disabilities)
gathering a team of people from your organisation help to raise vital funds for the charity by taking part in a fundraising event for us – like Run Reigate?
offering a storage space at your premises…we’d love to be offered a place in Redhill where we can store and easily access some of The Include Choir’s things.
To offer help or to ask any questions please email info@include.org
Penny Sims
Communications, Fundraising and Partnerships Lead
When healthcare information is accessible and understandable for all, it can literally save lives.
Alix Lewer, Founder and CEO of Include and The Include Champions helped to develop an accessible version of the CardMedic app…a tool that breaks down barriers to good communication in healthcare.
It’s a partnership that we are really honoured to be part of. We wanted to know a bit more about what the people atCardMedic thought, so we asked!
Rachael Grimaldi – Co-Founder and CEO of CardMedic
What is CardMedic’s mission?
At the point of care, the inability to communicate is the largest single contributor to health inequalities, and patients with additional communication needs make up nearly 50% of the population.
CardMedic’s mission is to break down communication barriers between healthcare staff and patients by making healthcare information accessible and understandable for all.
We’re committed to inclusive communication and believe in acknowledging and accommodating everybody, regardless of their communication needs. Our aim is to provide intuitive and cost-effective technology that empowers clinicians and patients to communicate quickly and efficiently across any barrier, enabling more effective delivery of care, reducing health inequalities, and improving patient outcomes.
Why did CardMedic want to work with Include?
We were really keen to work with Include because we share their mission to break down barriers and create a more inclusive world. At CardMedic, we recognise that accessible information is vital for ensuring equitable care delivery, so we couldn’t imagine a better partner.
Alix Lewer’s expertise as a Speech and Language Therapist, as well as Founder and CEO of Include, made it a no-brainer. She and her amazing team have been invaluable in helping us improve communication in healthcare and increase our understanding of the challenges people can face.
Together, we’ve been able to develop innovative solutions and resources that empower us to think differently about how we communicate. Particularly in a healthcare setting, we’ve learnt how to effectively communicate with patients with diverse communication needs and improve health outcomes for underserved populations.
Our shared vision of inclusivity and accessibility made us confident that partnering with Include would help us work towards a more equitable healthcare system for all.
How did the partnership help your project?
Alix is incredibly knowledgeable in the accessible information space and about the Mental Capacity Act (2005). She understands that inclusive communication means recognising and respecting all forms of communication–not just the written and spoken word.
Drawing on her knowledge of inclusive practice in health and social care, having worked as a Speech and Language Therapist in the NHS, Alix contributed to the initial development of an accessible version of the CardMedic app. Include’s lived experience Champions Group also continues to work with us to review our content regularly and provide feedback about accessibility.
Our partnership with Include has helped us refine our content to ensure that it’s as accessible as possible to individuals with diverse needs, including those with learning differences, visual and hearing impairments, and language barriers.
Alix’s expertise has helped us convert our library of scripts covering a vast array of clinical specialties and sub-specialties into Easy Read, at a reading age of 6 or under. This essentially means it is accessible to many more people than traditional information would be, both children and adults.
What would you say to others thinking of partnering with Include?
For anyone working in the accessibility, language, and communication space, they would be remiss not to reach out to Include! Include promotes inclusion and wellbeing, empowers people with additional communication needs, and ensures that they have equal access to services, facilities, and opportunities. They do a fantastic job of collaborating with businesses, educational institutions, and other organisations to help raise awareness of accessibility and provide practical solutions for inclusivity.
Include also offers brilliant training and consultancy services to help organisations improve their practices by making them more accessible. By partnering with Include, you’ll gain valuable insights, guidance, and resources to enable you to create a more inclusive environment.
The team are so friendly, and their expertise will help you address communication barriers and send out a powerful message about your commitment to inclusivity. All in all, we’d highly recommend partnering with Include!
(She won’t tell you herself, but while we are here and talking about healthcare…Alix won a Royal College of Speech & Language Therapists’ Giving Voice Award for voluntary work with The Mental Capacity Act Clinical Excellence Network – Raising Awareness of Supported Decision Making at End of Life.)
Penny Sims
Communications, Fundraising and Partnerships Lead
This week is National Inclusion Week which celebrates inclusion and encourages taking action to create inclusive workplaces.
One of the ways that employers can be more inclusive is to think about the sensory experiences of their employees. We found an interesting article on LinkedIn which talks about things like lighting adjustments, sensory break spaces and noise control.
Of course, sensory considerations are not unique to the office environment. People who experience their senses such as smell, noise, or textures in heightened or muted ways may need reasonable adjustments to be made wherever they are.
Many theatres are now good at taking sensory needs into account. For example, The Lyceum has a scene-by-scene Sensory Synopsis of The Lion King available on its website. In addition, during relaxed performances the theatre turns off noisy hand-dryers in the toilets and provides alternative ways to dry hands.
Being in a healthcare setting can lead to heightened experiences – so it’s important that healthcare staff and those designing healthcare settings take sensory needs into consideration and act on requests for reasonable adjustments.
We had the founder of The Sensory Projects www.thesensoryprojects.co.uk Joanna Grace as a special guest at one of our Champions sessions. She talked with us about the reasonable adjustments that autistic people may need to help communication in a healthcare setting.
Many thanks to Jo for kindly sharing her own personal insights of how her autism affected her experience of healthcare during pregnancy and birth.
The NHS’s Sensory Friendly Resource Pack (Free here: NHS England » Sensory-friendly resource pack) describes 3 types of sensory experiences that people with autism may experience:
hyper-sensitivity:
extreme over-reactivity to sensory input
hypo-sensitivity:
extreme under-reactivity to sensory input
sensory-seeking:
unusual interest in aspects of the sensory environment.
The Include Champions have produced a newFREE Easy Read document to share about reasonable adjustments for sensory needs.
When I talk to people about Include, I always say how much it has made a huge, positive impact in my life and improved my quality of life, given me a purpose and that it is the BEST charity I have ever come across where EVERYONE is included, everyone is welcome.
I want the world to know that there is no place anywhere that makes you feel so included, safe, comfortable, happy and purposeful as Include does.
How it started
I first found out about Include by research. I moved back down to Surrey from Coventry, and wanted to find out if there were any Makaton groups nearby and that’s how I came across Include. I messaged Alix and it all went from there.
I wanted to get involved because I was very lonely and I enjoy Makaton so much, and use it a lot personally.
At first, I was very anxious, only because I always am when facing new places, people and situations BUT this didn’t last long! Soon I was comfortable and felt ‘included’ and part of an amazing community and surrounded by lovely, genuine people.
When I first went to Include, I started off just joining in the choir every Wednesday evening in Redhill.
Growing in confidence
It wasn’t long before I wanted to volunteer, make a difference and help others.
I also started to attend some of the Stroll and Sign walks on Saturdays, going to performances, and helping to design the new ‘Star of the month’ certificate and another certificate.
I am also now part of the Champions Group which I really enjoy and feel we all make a difference by working on and designing Easy Reads for people and giving examples and explaining things like ‘reasonable adjustments’ etc.
Since being part of Include, I have gained confidence, made friends and have something to really look forward to each week; helping others, having fun, being included and having a purpose.
Signs of Change
Although I already knew most Makaton signs before I came across include, I have gained more skills from The Include Choir and the Champions Group. These include improved speaking and listening skills, trusting people because I feel comfortable with the people I’m surrounded by and learnt a couple more skills on my computer.
The things I do with Include really help me day to day and help my support workers, family and others around me to understand and communicate with me, and others in a better or different ways.
When I struggle, I can become non-verbal, so for support workers and family to know basic Makaton signs is very important and helpful. I am now able to feel confident to teach them the important basic signs that are useful so that they can best support me.
I think it is important for people in all sorts of jobs to know basic Makaton e.g. hospital staff, doctors, teachers in schools, dentists and other professionals that might come across people who may use a different form of communication like Makaton.
We are all different…
My favourite quote is ‘we are all different, but all equal’ and I feel everyone at Include is treated equally no matter what their needs are and this makes me very proud to be a part of such an amazing group.
The next step in my Include story is to do volunteering more and make more of a difference, help people more, improve more skills and gain more confidence.
I have a goal and that is to do a solo Makaton song at Christmas, I hope I can get enough confidence in time.
Discovering Include is the BEST thing that’s happened and I am very grateful for all that everyone does to make it such a lovely, enjoyable group.
Penny Sims
Communications, Fundraising and Partnerships Lead
At Include, we work hard to ensure that communication needs or disabilities are not a barrier to access or inclusion in our projects.
We proactively make reasonable adjustments – and we keep listening and checking what else we can do to ensure people have equal access.
We admit that we can always improve in this area.
Probably most services, charities and businesses can do more to enable genuine equality of access. We don’t just mean how easy a building is to access if you have a mobility issue. But the whole experience – how people interact and communicate, how we experience an environment or service from a sensory point of view etc.
Focussing on improvements that help individuals and getting it right tends to enhance things for everyone, with or without an additional need.
As well as coproducing a FREE Easy Read on Reasonable Adjustments, our lived experience consultancy team The Include Champions are reviewing some of the things we do within Include and helping to fine-tune them.
By sharing this FREE Easy Read we hope more people with communication needs and disabilities will have better experiences when they go to work, interact with services or are customers in shops and restaurants.
Email
We recently talked about our emails.
We already use accessible fonts and Easy Read format – with a picture to reinforce each point.
But our members suggested that we use shorter and simpler links, and make the writing bigger.
Website
We’re becoming even more aware of the importance of colour contrast in terms of how easy, or not, it is to read and have started to use a new resource to check this: https://colourcontrast.cc
Furthermore, we are going to be working harder to make best use of alternative (Alt) Text to describe the images we use on our website and elsewhere. Thanks to Colin Grist from Few and Far for his recent free talk and tips on website accessibility.
Our website provides project information in a calendar format so members can check at any time what projects are running, where and when. One of our Champions, Hannah is encouraging everyone to use it – it means you don’t have to wait for the emails!
Visuals
Consultation and co-production are central to the way we do things, so naturally Include Choir members help to write lyrics and choose which songs we learn to sing and sign.
Visual and tactile prompts help people with communication needs. So, we make a physical list of song names with visuals using Velcro. Members choose from a whole table full of song options to decide which songs we perform at certain events.
Recently Hannah, one of our members has suggested that our song polls on Facebook also have an image to represent each song option to enhance understanding.
We also have a photo board at the choir sessions – this is for people to add themselves (sign in – without needing a pen) as they arrive and so everyone can see from the photos who is there that day.
Recently we have had feedback to say that we should make the signing in board a bit more organised so that volunteers are shown in a board along with an idea of their role that day.
Objects
Hattie the hat stand is never far from Choir Director Alix’s side! There is a very good reason for that. We have Hattie because it carries all our props or objects of reference. We use physical props because some people find objects helpful to enhance understanding – because communication is more than signs or words.
Champion Beth feels the props are good as we have some visually impaired members – props can enhance their experience too. Member Philip loves the hat stand and Josh reminds us to include Hattie in some of our photos!
Location
Many of the adjustments we make are not to do with literal access ramps (often the first thing that comes to mind when people consider disability access). That said, when we run projects like our Stroll and Sign wellbeing walks, or perform as a choir in new locations we always risk assess beforehand.
An important element of that is assessing accessibility and working out what adjustments we may need to make. For example, regarding lighting in a car park, suitability for wheelchair users or access to a stage. And if we need to, we do feedback to venues about any issues to try to improve things.
If you would like some guidance on inclusive communication, or access to a lived experience a focus group to look at this topic for your organisation please get in touch: info@include.org
Penny Sims
Communications, Fundraising and Partnerships Lead
