rights | Include.org

Breaking Down Barriers – there’s an app for that!

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 at CardMedic 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!

Get in touch with Include, please email : info@include.org

More information : https://www.cardmedic.com/

(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 and Partnerships Manager

Reasonable Adjustments

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.

A graphic representation of a ramp - explaining the things that support Communication access. 1 Raise Awareness of Communication Needs. 2 Increase Understanding of Inclusive Communication 3 Build confidence and self-advocacy in people with Communication needs 4 Train people to be inclusive communication partners.

Focussing on improvements that help individuals and getting it right tends to enhance things for everyone, with or without an additional need.

FREE Easy Read download about Reasonable Adjustments Download

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

Image of a young man pointing at the colour red on a board which has two colours on it - red and blue

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.

A screen shot of a calendar of things Include.org is doing on 15th 18th and 19th of July. Which are Stroll and Sign on 15th at 11am, Epsom Include Choir on 18th at 6pm and Redhill Include Choir on 19th at 7.30pm

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

A photo of the list of songs that Include Choir members have put together on a board. Includes songs Any Dream Will Do, Three Little Birds, This is M, Sweet Caroline, I have a Dream, Fly a Kite, Don't Worry Be Happy, Shotgun and Wonderful World

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

A photo of 5 people walking down a path in the countryside chatting and using hand gestures while talking

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 and Partnerships 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
Communications and Partnerships Manager

What is Racism?

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

What is Racism – Include.org FREE Easy ReadDownload

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
Communications and Partnerships Manager