birthday | Include.org

The Long And Winding Road Of Charity Leadership

CEO and founder of Include, Alix Lewer, decided to mark the charity’s tenth anniversary with a challenge – to walk 100 kilometres across the South Downs in just 24 hours! In between training, running Include and raising two children with their own communication needs, Alix took the time to speak to me before and after the event to share what motivated her to take on this challenge, how it felt and what she hopes the funds raised will bring to Include.

Before the challenge

Alix running carrying a hatstand

‘I have the sort of brain that likes to join dots. I like symmetry and patterns, so in my head I had to do something with the number 10 in it. Last year I ran 5 kilometres carrying a hatstand and gathering our communication objects en route to mark my 50th birthday (as you do). I’ve run 10km before so that didn’t really seem special enough to mark the occasion. I love the South Downs, and when I saw the hundred kilometre challenge and learned of the partnership offer from Ultra Challenge which gave a generous discount on the entry fee if raising funds for Include, I thought – this is it!’

‘A lot of people have asked me how my training is going, and I must be honest, running a charity while looking after two small boys with ADHD/autism throughout the summer holidays has not left a lot of free time for training! I confess that my training has mainly consisted of buying some good quality socks. However, I love running/jogging anyway, so I try to fit in a run at least 3 to 5 times a week. When I was up in Manchester visiting a relative, I decided to walk everywhere with my rucksack instead of taking public transport. I just hope this is enough!’

Despite Include’s success in supporting over 200 members and turning over £200,000 for the first time since its founding, Alix shared that she has found the prospect of an extreme physical challenge far less daunting than running a charity.

Alix working with an Include.org trustee

‘I don’t like asking for help, which is not ideal for a charity founder, where we are permanently in a position of asking for financial or in kind support. This challenge feels like the opposite of that; there will be no opportunity for anyone to do this other than me. I want to prove to myself that I can just keep going even when it feels impossible and no matter how painful it is. Except for the socks (which I’ve learned are an obsession for all Ultra distance participants), the qualities that you need to run a small charity are the same qualities you need to walk 100km in a day – endurance, resilience, and blind optimism that it will all be all right in the end. I am hoping this will see me through to the finish line – and see Include into a future where it can reach many more people and doesn’t rely so much on just a few incredibly hard working few.’

2 people using talking mats

In discussing her anxieties leading up to the challenge, Alix shared that the process she’s been preparing for isn’t unlike what the members of Include, and others with communication needs, work through every day. For most people, having a conversation is like a short walk down a familiar road, a simple journey from A to B. For those with communication needs, the same conversation can feel like a long and tiring trek across unfamiliar territory. The same way that Alix is persevering through optimism and the support of her friends, family and colleagues, our members persevere every day through their own strength and the support we are able to give. I know that Alix will be taking great inspiration from them on this challenge! 

After the Challenge

Alix at the finish line looking really proud holding her medal

That inspiration of the perseverance of people with communication needs proved to be just what was needed. Alix completed her 100km walk across the South Downs in just under 24 hours. Huge Congratulations to her! 

‘Beautiful. Exhausting. Exhilarating.’ were the 3 words Alix chose to describe the experience. 

‘The most challenging part of the walk was in the early hours of the morning. At 3am, it was pitch black; I had been walking since 8.30am the previous day and I still had over 30km to go. At one point, I lost touch with the group, and that was tough. During the day, I had enjoyed the solitude and time for reflection of walking on my own, but at night, being able to talk to other people was essential and allowed you to focus on the conversation instead of your feet (though I admit there was a fair bit of sock-related discussion). When I found myself on my own on a steep hill in the dark, I did wonder what I was doing – and at that point it was only what my mother calls ‘sheer bloody-mindedness’ and I prefer to call ‘determination’ which kept me putting one foot in front of the other. As I suspected, running a small charity proved useful preparation, even if I hadn’t managed to do much conventional training.’

‘It’s hard to identify the ‘best’ moment. There were many. The South Downs is so beautiful, and the benefit of walking is that your mind slows to a walking pace, allowing you to notice and feel so many tiny, wonderful details.

Again, this made me think of interacting with people who don’t use words to communicate, you need to watch carefully for the tiny changes in expression, sound or movement that tell you you have made a connection – and which are magical when they arrive.

Alix happy to reach the rather small 100km sign!

Having said that, I can’t deny that the big milestones mattered too. Arriving at the 100km mark felt incredible – though also a little frustrating, as it turned out the finish line was another kilometre away! The hug I got from my boys at the finish made that extra kilometre completely worthwhile.’

Alix said it was hard to express the gratitude she felt for all the people that had donated or offered advice, support and encouragement. ‘Everyone has been brilliant – but a couple of words and moments do stand out for me. My colleagues at Include have been phenomenal (Emily even offered to walk the 50km in the dark with me!). Jill, who also works for Ultra Challenge, went out of her way to support me – and was there at the 3rd rest stop, making sure I had everything I needed. Anna, who runs our Include Outdoors project, and knows a thing or two about exercise gave me a care pack of high protein snacks, and a beautiful card with the perfect messages, which I took with me.

Everyone’s messages of support meant so much – and to whoever the anonymous donor was who suggested singing ‘Is this the way to Amarillo’ to keep me going – thank you, it worked!’

Thanks to the generosity of the Include community, Alix raised £2800! So what will the money help Include to do?

‘The money raised will help us fund an exciting three-year development strategy, which we hope will help us capture the essence of what makes Include the life-changing service that it is and help us bring this to more people. Look out for our ‘Be an Includer’ campaign – Include doesn’t only provide services, it helps others to be more inclusive too so we can build more inclusive communities everywhere. Like the Ultra-Challenge, this is a long, long journey, but the funds that people have generously donated will enable us to take the first positive steps along that path.’

Include members outside with both hands raised happily joining in

And finally, what advice would Alix give to anyone considering undertaking an Ultra-Challenge event?

‘Do it! I have already started thinking about the next one. I really can’t express the sense of accomplishment you will have at the finish line, and the fascinating people and stories you will encounter along the way.

Oh, and of course, make sure that you have invested in several pairs of good quality socks.’

If you, like Alix, are interested in taking on an Ultra Challenge event and raising funds for Include, simply pick your location and distance on our Action Challenge page to get started. You can register directly or contact us at info@include.org.

Or if you’d like to help Alix’s efforts go the extra mile to build more inclusive communities, you can donate here to take us one step further towards our goal.

Alix standing infront of the South Coast Challenge sign
Eglantine
Eglantine
Communications assistant

Meet Ellie, one of our founding members

“Ellie enjoyed coming to the choir right from the outset. She had learnt Makaton signs when she was a toddler and they had helped her speak. She took to singing with signing straight away,” adds Sue, Ellie’s Mum.

Ellie continues; “one of my favourite memories is when it was my birthday and I was with my Mum at Redhill train station the choir was there to sing Christmas carols for people to hear. They all stopped and sang Happy Birthday to me!”

Sue says; “Ellie enjoys the social side of the choir and being part of a group. She likes to help and become involved. They enjoy performing in many settings but we always enjoy Christmas at the Belfry.”

“I am busy, but I always want to go to Include, says Ellie.

I do Bloomin’ Arts in the day on Wednesdays and then Include Choir in the evening. Tuesdays I do Bloomin’ Arts all day, then Include Champions on Zoom in the evening.”

Choir best bits

“I like the month song – I remind Alix to do the month song at choir. It’s a tradition I like.

I also like it when we have a choir dress-up theme at rehearsals for something like Halloween.

We used to do a choir newsletter with everyone’s news- I liked that.

One year Alix had song dice – and the sides of the dice had pictures representing different songs on. Like “Make your own kind of music”.

Also, the paperchain song – I like that one and I enjoyed making the giant paperchain in The Belfry shopping Centre. I took my friend and family to see the paperchain in the Belfry.

I like performing with the choir. I like Run Reigate – that’s a good one.

I have got loads of memories with Include.”

Sue adds; “Once the Include Choir sang in a concert with two other choirs and I joined the Bletchingley Community choir as a result.”

Never forget

Some choir members can’t come anymore as they have sadly passed away.

“I knew Sai from East Surrey College – we went to college together.

I would sit next to Sai at Choir sometimes. We would talk together sometimes, me and Sai. His parents gave me cuddles, they did, when they came to the choir Big Sing.

One of the ways that we remember Sai is The Sunshine Award in his memory – (an award presented to support staff who join-in and best demonstrate Include’s values), I was proud of the winners of the Sunshine Award for Sai.

Michael passed away too. I used to live with him as well. He asked me out once, and I said yes. Alix put a picture of him on the screen at choir.

It feels like a good thing that Include has had new people join – and seeing people from the Grange at choir as I used to live there.

But I miss Sai and Michael.”

Being a Champion

“I am a Rep for the Include Champions Group .

I like helping people with Champions and I like Easy Reading.

Other information that isn’t Easy Read can be too small – it’s better with big words.

Champions is very good giving ideas how the wider world can be more inclusive.

I like working with people in the Champions group like Philip and Simon. I knew them a bit already from the Mencap committee. I know Josh as well – and we both have nephews. Also, Beth, and there used to be Hannah too.

We do different subjects at Champions – and we have made fun Easy Read stuff too like Halloween and Christmas quizzes, that kind of thing.

I have a folder with Champions Easy Read information in it at choir.

I like going through the folder and putting things in the right places.

People are able to look at it and sometimes I talk to people at choir about Champions.”

More to be proud of

“I have done so many shows with Bloomin’ Arts – I am the longest member there too.

We are doing Jack and the Beanstalk Panto at the moment. I have also done signing in a play so the audience could see. I did it with Giles (who also goes to Include) on stage too.

I am feeling a bit nervous about doing the G-Live performance coming up because Bloomin’ Arts will be there too and they have never seen me sing with Include before.  It’s a first!

I was proud of Include winning the recent Nasen award that I saw in the emails. And the Champions award. And the Queen’s award for volunteers. And the Learning Disability & Autism awards.”

Looking Forward

“When Include is 10 years old next year – I think we should have a party!

And we need to make sure it’s not difficult for people who can’t see (Include has some members who are visually impaired or blind). We’d need space to have a party. And there would need to be cake!

Champions can help involve the wider community too. I did a speech for Alix’s birthday…I could do a speech for the 10th birthday of Include.

Nigel (our Treasurer) is very good on the money side and will have more ideas for the party.

We could do a “Thank you” song for staff too – something like that.”

Sue gets in with an early thank you:

“Thank you Alix for your vision and hard work. Ellie is very committed to both Include and The Champions, and her confidence and communication skills have benefitted.

Although the venues Include uses have changed, the essence of the choir has stayed the same, although it has grown in size.”

This feedback is something we hope to take into the next decade of Include…some things change, but the essence remains solid and valued.

Penny Sims
Penny Sims
Communications, Fundraising and Partnerships Lead