Rarity
Dear Reader,
Hard to believe that the summer is over, but we can at least celebrate the start of autumn by sharing issue 11 of Rarity Life magazine with you!
We have had the opportunity to speak to some truly incredible individuals and organisations over the summer months, and as ever it has been both an honour and a privilege to be entrusted to write and share all of the stories that we feature.
There is a central theme of the constant need to fight for what you believe in, and need, that is woven through many of the features in this edition. From the truly remarkable life that Sparrow Harrison has lived in his eighty odd years, the commitment to driving forward change that friends and colleagues Avery and Kelly share, the powerful message of positivity that Nicholas Kelly brings to his work, through to the devastating need to keep fighting to be heard that the secondary breast cancer community faces. Rarity Life truly shares your stories with the world.
We’re so grateful to everyone who contributes their time, effort and stories to this magazine and to Same but Different. Thank you for reading, and please do share it far and wide. And of course as always we would truly welcome your thoughts and ideas for future publications, so please do get in touch.
Happy reading.
Same but Different
MEET THE TEAM
Ilmarie Braun
Ilmarie Braun
Katy Parry
Claire Li Gareth Jones
Katja Taits
Sally Stringer
Ceridwen Hughes
Suit: Mens Wool Tweed Suit 3 Piece Authentic 1920s Tailored Fit Classic (Navy) £169.00
Photograph by Ceridwen Hughes
The Tale
Sparrow Harrison’s Journey from Stammer to Song
Sparrow ‘Robert Berkley’ Harrison has lived a full and interesting life. A life that was not always easy at times. His story is one of resilience, determination and his desire to help others. His unusual name came from his sister, originally he was to be called Robin, but his sister remarked he looked more like a sparrow and the name stuck. Born on the cusp of World War II in Denbigh, he grew up without his father who was tragically killed before Sparrow had the chance to know him. His early life was marked by the absence of his father, and the presence of a severe stammer that helped to set him apart from his peers.
He was introduced to boxing at a young age by his grandfather, a general who wanted him to ‘be a man’ after his father was killed. “I was given a pair of boxing gloves as one of my first presents. I used to beat the hell out of the nannies, and other things that weren’t allowed. Then the gardeners, who obviously weren’t allowed to punch me back, so I wasn’t bad at boxing. I was really keen on my boxing, which I felt gave me street cred, something that felt especially important because of my stammer. I got into the odd boxing team or two, but I never thought I was good enough. John Peel said in his book that I used to defend him, because he went to the same school, and I was tough. I suppose I was almost a bit of a bully really, because I was a stuttering idiot trying to be a tough guy.”
All photographs by Ceridwen Hughes
Sparrow was shaped by his family’s military heritage, with both grandfathers serving as Generals and his father as a Colonel. However his own military career was cut short as his severe stammer made it impossible for him to command effectively. “I never rose above a Fusilier in the Royal Welsh Fusiliers. I went into the Army expecting to be a soldier, but I had this crippling stammer. I was drilling a squad once, and they were still marching because I couldn’t say halt! You couldn’t have somebody as an officer who couldn’t really speak, because it’s quite important.” This stammer, combined with the pressures of the high expectations placed upon him, led to his eventual dismissal from the army. “I was an embarrassment to the regiment because I should have been a good soldier, and I wasn’t.”
After being dismissed from the army and struggling with feelings of failure, he had to reconsider his future. “I was a realist and had to find another way of life, I’d been used to being a failure, I just had to accept I wasn’t very good at anything. At school, I wasn’t very practical. I just wasn’t particularly good at things.” Determined to find a new path, he initially moved to Liverpool and worked as a GoodsInwards Operator. However, the allure of London during the start of the swinging sixties was irresistible, especially to a young man in his early twenties.
“I decided I wanted to go to London and enjoy the wilder side of life. I ended up with a rent-controlled flat in Knightsbridge, it was incredible, I was right in the middle of it all. I initially worked as a minicab driver and started to meet new people.” Despite his stammer, he found camaraderie and humour among his colleagues which included them taking the mick, knowing that he struggled with saying his Bs and his stammer.
It was during his time working as a driver that he met a brilliant mechanic. “We started a garage in South Kensington in London, a little lock-up garage. You can’t do that nowadays, but because I did have a little bit of money, I was able to help in that way.” Mechanics was something that he found interesting and would go on to help shape his life. His entrepreneurial spirit didn’t stop with the garage though, he also supported his girlfriend in starting the now-famous Graham and Green shops. “The actual name of the company initially was Graham, Green and Harrison, but Graham and Green sounded much better, she and I are still great friends.”
Despite his severe stammer, he discovered a good way to communicate at social gatherings, “I could sing and play the guitar. I wasn’t very good, but if you could play three chords, you were away.” So, whilst he was not comfortable talking at parties or social events,
he would bring his guitar and perform. Sparrow’s musical journey led him to form a band with friends called Sparrow and the Gossamers. Eventually they became the house band at a club called Esmeralda’s Barn in Knightsbridge, which is now infamous for being owned by the Kray brothers - Ronnie and Reggie. At the time Sparrow had no idea who they were, nor did many others. “The Krays were unfriendly and rarely smiled. They asked me to be a partner with them, which just meant taking 300 quid out of my pocket and putting it into theirs.”
Although Sparrow’s stammer was a constant challenge in many ways it didn’t affect his singing, so much so that he recalls how “Ronnie Kray even mentioned in his biography that he couldn’t understand how I stammered when I spoke to him, but didn’t stammer on the microphone!” This phenomenon, as depicted in the film The King’s Speech, allowed the King to speak clearly when he didn’t think he was addressing anyone directly. “I was the one who did all the introductions and things, yet I had a hell of a bad stammer.”
Boxing and performing helped to improve how he handled his stammer and, wanting to help others who were travelling on similar journeys, and to give them the confidence to accept or overcome their unique speech traits he founded the British Stammering Association (BSA) in 1978.
The aim of the BSA was to provide resources, support, and advocacy. Under Harrison’s leadership, the BSA grew into a reputable charity, offering services that included speech therapy guidance, community support groups, and educational resources. Working alongside some others he began running free classes for those who stammered, running sessions both before and after work, and soon people travelled across the country to access these brilliant services. His reputation grew and he was invited to appear on Woman’s Hour, Pick of the Week and local radio and TV. Through his visionary efforts, Sparrow transformed his personal struggle into a legacy of hope and support for countless individuals across the UK.
As he reached his forties his thoughts returned to Denbigh and a return home, which eventually happened after his stepfather died. “I had to think, what would I do to make a living up here? We had about thirty acres of land, which my parents used to keep ponies on, they were very into horses which I wasn’t, I was terrified of them. I realised that tourism was the only thing that made any money, and so I started a little car museum. Having worked in a garage, I could do a certain amount of repair, and you could buy up old cars quite cheaply in those days.” His passion for
1950s vehicles would soon expand to every aspect of the decade, and the Cai Dai 1950s Museum was born.
His need and drive to help others never waned, drawing inspiration from both his faith and his aunt. “My strong Christian faith, greatly influenced by my aunt Rosa, has always guided me. She was a terrific Christian, and she formed the first Girl Guides group up here. She also ran the Girl Guide International service, which went into the concentration camps and rescued people, and helped look after what they called the DPs (displaced persons). She was a great influence on me.”
In honour of his aunt he wanted to try to use their land in a way that she would appreciate, and ultimately decided to form a charity to help people who struggled with substance abuse, criminality and homelessness, offering them work and a place to live. “I set up lots of caravans for people to live in, but I found most of them turned against me in the end, because I was well off compared to them. It was a hard time, I used to get attacked quite a lot, but because of my boxing, I could defend myself. I didn’t ever really hit back though.”
Faith has helped him deal with life, and the often difficult path he walks. “It was not always easy, but it never has been easy
doing this. I think that Jesus and his disciples had a life of failure, it wasn’t an easy life for them. I feel that I must try and keep to my Christian beliefs, even if it all goes wrong. I don’t think any religion is easy, because you have to live by certain standards, and Christianity certainly isn’t easy.”
To the outward observer Sparrow’s life has been one of giving back. Despite, or perhaps because of coming from a very privileged background, he has always sought to help others, and one might conclude therefore that this has been his life’s work, but he disagrees with this. “I didn’t think of it as my life’s work, I just thought it was the right way to live.”
Sparrow’s kindness and willingness to help those who need it often leads to some wanting to take advantage of his generosity. “I had a godson who was in the mental hospital next door, and I thought that the discipline of boxing training would help him. He came to live here, and through that experience I realised that other people could benefit from the same discipline of working and training here. But it just didn’t work. I think they thought of it as an easy way out, and that I was this old idiot. They thought, and some people still think, that they could take advantage of me. I get it all the time. They see me as an easy target. I’m old now, it’s just the way life is, but they find that I don’t give in. I carry on however much they may knock me down, I still get up.”
As time marches on Sparrow is acutely aware of his increasing age, and the realist in him is as evident as ever. “I am eighty five years old now, so I know I’m going to die soon. I mean, I’m not planning to die now, but I’ve had cancer and sepsis, and other health issues. Most of my childhood friends are dead. In my later years I finally think I’ve found what love is about with Gemma, so I have to carry on. I really want this museum to continue to run after I’m dead. People have put so much into this place and it has so much to offer.”
The walls of Cai Dai are lined with vintage posters, and each surface is crammed with beautiful artefacts from a by-gone era. Sparrow still spends his time re-arranging and polishing the items in the museum where he continues to work long after retirement age. He won’t give up showcasing his museum, nor helping those who need guidance and support until he has to. And, because of his determination, his drive and his sheer passion for living that is unlikely to be any time soon.
“I’m quite happy to die. I think that’s how I can sum up my life. I feel it’s been a tough life but I think everybody has a tough life. Life is tough, it’s not meant to be easy. I’ve battled on, and I’ve been very privileged, and I’ve been fortunate to have a strong spiritual belief, I’ll be quite happy when I have to shuffle off this mortal coil, but not today, not before this is finished.”
The Cai Dai 1950s Museum
The Cai Dai 1950s Museum in Denbigh is a unique attraction that offers visitors a nostalgic journey through post-war Britain. Curated by Sparrow Harrison the museum showcases an extensive collection of 1950s memorabilia, capturing the essence of the era. From vintage household items and fashion through to classic cars and motorcycles, the museum provides a comprehensive glimpse into the daily life and culture of the 1950s. Set in a charming location, it reflects Harrison’s passion for preserving history, offering an engaging experience for visitors of all ages who wish to explore the iconic styles and innovations of mid-20th century Britain.
Visit Cai Dai’s Facebook page to stay up to date and plan your visit
Click here
What is a stammer?
Stammering, also commonly referred to as stuttering, affects speech. It can be relatively common in childhood, though in some cases it will continue into adulthood.
Stammering is when you repeat sounds or syllables, or when a word gets stuck or does not come out at all. For more detailed information visit the NHS website here:
Click here
For advice and support visit the British Stammering Association’s website here:
Click here
Photograph by Ceridwen Hughes
Geraint
Geraint, a boxer and a personal trainer, is one of the people who has been supported by Sparrow. Following a troubled criminal past, and various stays in prison, he is able to thrive today due to the help and support he has received. He now uses the boxing facilities to train others, giving back to the community, and is also able to use it as a base in which to enjoy time with his children. “I’ve known Sparrow since I was a teenager through boxing, he’s a legend around here for everything he does, he is a real role model. Like Sparrow, I believe boxing keeps your mind in the best place, it can offer so much to children too who might otherwise struggle. The discipline and support can change their life.”
Through some difficult times Geraint has maintained a love for his sport, and even after suffering some great personal losses, it has helped him to stay positive. “I’ve had the benefit of what Sparrow has offered me here with this space. I’ve had tough times in the last few years that can change your life massively. I lost my dad to asbestos lung cancer, and everyone expected me to go off the rails to where I was before, getting into trouble and things like that, but I didn’t. I kept focussed on the sport, and again, it kept me going and in a good place.”
It is Our to
Time Shine
In conversation with Kelly Berger & Avery Roberts, Outreach + Engagement Coordinators for Cure CMD
Avery and Kelly first met in 2020 when Kelly joined Cure CMD as an Outreach and Engagement Coordinator, a role which Avery was also employed to do. Before joining they were both active in the non-profit sector, but at Cure CMD they have truly found their place. Avery explains, “there’s a deep connection, because we are specifically connected as CMD affected individuals. We always like to say that Cure CMD has two sides to
it, the research side, and the community side. Kelly and I spearhead a lot of our community and outreach programming. Really, I think what makes us the best people to do this job is that we have CMD, and we live with that every single day. Of course we have our own opinions but we’re also able to adapt to others and their experiences, and we always say how we find so much value ourselves in connecting with others travelling along similar journeys as us.”
Photograph by Maddie Graves Photography
Congenital Muscular Dystrophy (CMD) represents a group of rare, genetic diseases causing muscle weakness from birth. Explained simply, CMD causes muscles to break down faster than they can repair or grow, meaning that a person with CMD may have various physical and neurological impairments. Some never gain the ability to walk, while others lose the ability as they grow older, which means that many in the wider CMD community eventually become full-time wheelchair users. Lack of accessibility is one of the key issues that Avery and Kelly work on, both personally and professionally, as they feel passionately that the ofteninaccessible nature of the physical world around them should not restrict them from being ‘active participants in society.’ As Kelly states “we are here, we are exhausted of being excluded but it’s our time to shine, no matter what obstacles we have to overcome.”
Their shared determination to live life to the fullest is one of the key foundations of their friendship, and in each other they can see a reflection of what it means to be a creative, independent, strong woman working hard to carve out a place in the world, no matter how hard it is. Over the years they have collaborated on a number of shared work projects, seeking out new and innovative ways to raise awareness, and to ‘tackle misconceptions surrounding disability and give a loud voice to the, often forgotten, rare disease community.’ More recently they met up in person to explore New York City together, a pretty substantial undertaking as whilst Avery lives just outside the NYC area, Kelly lives in Ohio, a good 700 miles apart.
Their trip to the city served not only to give the friends time together in person, but also offered them a hugely powerful way claim to their space in the world, to literally be seen and heard. As they explained, people are still often surprised to see individuals in wheelchairs out in the world. So seeing two strong, independent young women out having fun in New York truly created some great opportunities for conversation, to raise awareness, and to be and feel represented. Kelly clarifies that “people are still so shocked to see people in wheelchairs existing in public, even in one of the biggest cities in the world.” Avery adds that when they were out and about exploring the city together in their powered wheelchairs, they could see that some people felt the need to look away, that they simply did not seem to know how to process seeing not one but two wheelchair users going about their day.
“Avery and I feel it is our
mission to bring these discussions to life and really celebrate and uplift all those living with rare neuromuscular conditions. Offering them strength and advice in their journeys is something we’re both very passionate about.”
“New York isn’t the most accessible place. Living here I know that, and with such busy sidewalks often one of us has to go in front of the other, and then it’s like a parade of the wheelchairs. I think that’s very different, because as Kelly said, even when you have one wheelchair it’s overwhelming for people, and different. So two is very powerful, because unfortunately I don’t think that there are a tonne of people out there who are willing to get out in the world and live their life to the fullest, probably because they don’t feel like it’s possible. I think Kelly and I bring our voices to that. We always say that when someone sees one of us, or sees both of us navigating a world that wasn’t built for us, that hopefully they’re changed for the better. I think that that’s a way of creating change, and that in using our voices, big or small, hopefully we’re striving to start conversations that haven’t been started yet,
“There’s a deep connection, because we are specifically connected as CMD affected individuals. We always like to say that Cure CMD has two sides to it, the research side, and the community side, and Kelly and I spearhead a lot of our community and outreach programming.”
or that are long overdue. That we are advocating to enact real change on behalf of our community.”
Nelson Mandela once said that ‘there is no passion to be found playing small – in settling for a life that is less than the one you are capable of living,’ and this quote is one that really speaks to the way in which Avery and Kelly try to live their lives. The passion which guides them is shared, but that which drives them is different. For Avery it is her love of dance, and for Kelly it is her love of music.
When Avery was born both of her hips were dislocated, which she explains was an early sign that she might have a neuromuscular disease. “But it wasn’t until I turned seven years old, after many years of expensive genetic testing and muscle biopsies that I was finally diagnosed with CMD.” Over those seven years she gradually lost mobility, and despite regular physical and occupational therapy she was eventually no longer able to walk. But by then her love of dancing was set into her very being, bringing both joy and opportunity into her life in exciting and even groundbreaking ways. “I’ve been dancing since I was age four, and now I’m a part of a professional dance company in the city. I’ve had a lot of opportunities I’ve been honoured to take part in, I was lucky enough to be the first wheelchair user to
Photograph by Maddie Graves Photography
dance on the stage at Radio City Music Hall (a well-known entertainment venue within the Rockefeller Center in New York City), and I was among the first few wheelchair users to feature in a live, televised national production. I think that anytime I get on a stage, or when I do a commercial, then hopefully someone in the audience has changed for the better, or maybe a viewer has changed their perspective. It can be a really powerful and authentic representation of our rare communities, and it is something that we’re kind of starting the conversation around.”
For Kelly it is the experience of going to a concert, of seeing a band you love playing your favourite songs live on stage that brings joy. “One of the things I love is live music, so I go to concerts, as many as I can, and as often as I can. I just love that feeling of being in a crowded room with hundreds of people, all singing the same song. You just hear it so loud, and it is so moving. I’ve always had this free feeling when I go see live music and concerts.”
But, perhaps unsurprisingly, though nonetheless disappointingly, lots of venues are not particularly accessible. So, as with so many aspects of life, Kelly has to work harder than she should have to just to find ways to still be able to access the things that she loves to do, often finding that she is alone in her determination to do so. “I do nearly always feel like I’m the only wheelchair user at gigs, because unfortunately there’s a lot of people who won’t go because it can be scary or intimidating to be in such a crowded space, or an arena or whatever it is, alone.
Getting a second ticket in general is a struggle, another hurdle for us to jump, so there is always a lot to think about to try to get to the show. But I just keep getting out there and doing it, and I hope that others are encouraged to try so they can have that experience too. Because for me, it’s just so worth it.”
Whilst both Avery and Kelly are committed to living their lives to the fullest, and doing what they love as often as they can, the truth is that they need to work extra hard to be able to do so, because navigating a world that has not been built with accessibility in mind is something that requires research and planning. Avery explains that “when you live with a disability there’s always an extra level of planning before you go out. You’ve got to look on Google Streetview to make sure you’re not going somewhere that you’re not going to be able to navigate with your wheelchair or get into. That goes for everywhere, so before going to a restaurant it’s about making sure that it’s accessible in our eyes, because some people’s definition of accessibility is different from ours. We’ve definitely learned that throughout our years, and I’ve also learned to find the right parking garages, ones that can fit my van because technically our vans are oversized. Then we need to figure out how many blocks away is it from the venue. Especially if it is likely to rain, indeed the weather is a huge factor because we can’t be out in inclement weather.
So we always need to figure it all out, and it’s definitely trial and error for sure. But should I not try and instead do I limit what I do? Or do I try it and see what happens? Maybe once I try it, someone else who thought that they couldn’t will, and they might even feel more confident going into it.”
What is particularly striking is that Avery references that what some people might define as accessible might not actually be truly accessible. In addition, there are some extra factors here that are worth considering. In many older buildings creating an accessible entrance might mean some building work to create a suitable entrance around the side or back for example. Kelly elaborates on this point, highlighting that it can at times “feel like we’re an afterthought. ‘Oh, I guess we should put a portable ramp there.’ But really we should be at the front of the conversation, not ‘oh, wait, we’ve still got to figure out how to get the wheelchairs in.’ We hope that one day we are thought of first instead of just trying to make it work.”
The additional concern, and one that urgently needs addressing, is that if these access points are down uneven, poorly lit side streets are they truly safe and accessible? The reality is that as young, attractive women both Avery and Kelly also need to think about their safety when they are out beyond the issues of access. The continued debate about the safety of women in public spaces is a huge topic, and one we can’t do justice to here, but Kelly puts it perfectly when she notes that “just being a female in general, and then also being a disabled female, can be a deterrent for a lot of people to pursue things in public. Because you know we do have that added layer of worry about
all the things that could happen when you are out, trying to do something independently, and on your own.”
Yet Kelly is determined not to let this restrict her, or allow it to be an extra barrier to seeking out the experiences and joy in her life. “For sure it can be scary, but I try to not live in that fear. I try to keep pursuing the things in life I love as much as I can, but always bearing in mind that these issues do come into play and being cautious. We understand people’s apprehensions but we definitely try to encourage people to do the hard things, to try, and to pursue their passions and get out there.”
Photograph by MSG Entertainment and courtesy of Avery Roberts
It is this message, to live life as fully as possible, that lies at the very heart of the outreach and engagement work that Avery and Kelly do with Cure CMD. As they primarily work remotely it means that they can support other young adults in the rare neuromuscular disease space from around the world. For Kelly supporting the community by highlighting areas that are often ignored but are at the forefront of the minds of those living with these conditions, is a main
priority. “Avery and I feel it is our mission to bring these discussions to life and really celebrate and uplift all those living with rare neuromuscular conditions. Offering them strength and advice in their journeys is something we’re both very passionate about.”
As Avery concludes, one of the most powerful ways that they can do this is by putting themselves out into the world, by living their lives fully, by sharing their adventures, the lessons learnt along the way, and by continuing to claim the space in the world that is rightfully theirs. It is this, she explains that is truly “fulfilling, shattering stereotypes and showing the public that we’re relevant in today’s world, navigating a world that was not built for us.”
About Congenital Muscular Dystrophy (CMD)
Congenital Muscular Dystrophy (CMD), or Congenital Muscular Dystrophies, represent a group of diseases causing muscle weakness at birth. CMD is most typically an autosomal recessivelyinherited muscle disease that is present from birth. The disease causes muscles to break down faster than they can repair or grow, meaning that a person with CMD may have various neurological or physical impairments. There are 5 Primary Subtypes of Congenital Muscular Dystrophy, but for a more detailed summery visit the Cure CMD website.
Photograph courtesy of Kelly Berger
Songs can Live Forever
In conversation with Ben
Buddy Slack, Founder & Creative Director of the Swan Song Project
“People very rarely write a sad song. I always say that while the context of our work might be sad, generally the songs are about the things people are most proud of, the things people most enjoyed about their lives.
A lot of the time our sessions are very inspiring and uplifting, because generally people are telling you about the things that made them most happy, and the things they wish for their loved ones, so the content of what we’re doing is about the best things in life really.”
All photograps courtesy of Swan Song and Ben Buddy Slack
Established in 2017 by Founder and Creative Director Ben Buddy Slack, the Swan Song Project gives people who are living with terminal illnesses, are planning their end stages of life, or are dealing with bereavement an incredible opportunity to write and record their own original song. The author and journalist Matt Haig wrote that the people you love never die completely, because ‘they live in your mind, the way they always lived inside you, you keep their light alive’ in his book How to Stop Time , and what better way to live on than through a song? On their website the team at the Swan Song Project explain that they ‘believe everyone has a song and these can live forever.’
Ben grew up in Leeds, and whilst his immediate family are not musicians, he explains that his mother is from a large, traditional Irish family and so within the broader family there were many musicians who inspired him. Most notably his uncle, who taught him how to play the guitar during visits to his grandmother’s house. Reflecting back on those early days the powerful and positive impact that music could have was clear to Ben even then.
“My grandma wasn’t a musician herself, but she used to love when we had the guitars out at her house, she’d sit in the corner and sing along.
She had Alzheimer’s, and had lost a lot of her memory, but she could always remember the words to old songs.“
Years later it was the memory of his grandmother that both gave Ben the idea and the passion to set up the Swan Song Project. “I have lots of really nice memories of singing with grandma, and particularly at the end of her life.” He continues, explaining that “after she died I was thinking back on it, and thinking that I should have recorded her singing, that would’ve been a really nice thing to have had. Being a songwriter I could have written a song with her, and that would have been even better. I wondered what she would have said if we’d written one, and I remember thinking that the family would probably still play that song when we get together now, and that it’d be a really nice way to feel like she was still with us. Then it kind of dawned on me that I’ve got quite a lot of experience writing songs with people who don’t normally write songs.”
As with so many things
that happen in life the song writing experience that Ben built up over the years before he founded The Swan Song Project happened fairly organically. As a child he had loved writing stories, and once he began to play the guitar and fell in love with music it simply “felt very natural to me, I thought ‘well, I can write stories that we can put to music’.” As a teenager Ben began playing gigs with his uncle, mostly playing traditional Irish songs. A few years later he joined a local covers band, before going on to set up his own band where they were able to perform their own music. Over the years he became well known in the local music scene, which eventually led to him being asked to become involved in some community music work.
“There was a community music workshop for one day that I went to, they were starting a project with the Youth Offending Team working on a music Arts Award qualification which they asked me to work on.”
After this another charity
that knew Ben asked him to be involved in a project they were working on, and things built from there. By 2017 Ben had worked across a range of projects with young offenders, as well as in adult prisons. The work with young offenders naturally overlapped with “various mental health projects, likewise at the prison, so in some ways I fell quite naturally into building this mental health and prison experience. So, while I didn’t have as much community musical experience as lots of other people I had lots more mental health and prison experience, so I got some really good opportunities based on that.”
The idea of The Swan Song Project sat with Ben for a while before he began to seriously consider trying to make it a reality. When asked how he knew it was a good idea Ben explains that the way he can tell if an idea, or indeed a song, is a good one is when it does not leave him.
“I felt like it was a good
idea, and one that wouldn’t leave me. There is a similar thing with writing songs, a lot of times you might have an idea, and one of the ways of judging if it is a good idea is if sticks with you. I have ideas all the time, so one day I’ll be thinking about something but then I might forget about it by the next day, but the idea for The Swan Song Project just stuck with me for a long time.”
It was, he explains, hugely intimidating, because whilst he had a huge breadth of relevant experience, he had always worked with or for other organisations or projects. “I had never set up a project before so it was very daunting. I didn’t know, just how do you actually start doing something yourself?”
He started by asking somebody that was really close to him for their opinion, and gradually he started to tell more and more people about it. He recalls that “I kept expecting that at some point somebody would tell me why I couldn’t do it, but everyone seemed to think it was a great idea and that I should do it. No one said no, and so that felt like I had to keep taking these next little steps.
I had quite a long period
where I kind of built up my confidence, and eventually I wrote to some of the local hospices. I expected them to come back to say ‘no, you can’t do that’ but then they said ‘yes’, this sounds great and so I started at the Marie Curie Hospice in Bradford.”
Before he began The Swan Song Project most of Ben’s work had been in group settings, a dynamic he was confident and comfortable with. He knew that for this project what he needed was to be able to work one-on -one with the person who wished to write their own swan song. The Swan Song project website puts it beautifully when they state that ‘no previous musical experience or abilities are required. You don’t have to be a singer or a poet, you just have to be you. Your life and experiences are unique and so your song will be too.’
Initially Ben worked alone and was primarily based at the Marie Curie Hospice that was local to him, but over the years the team, and the area that they cover, has grown. Today there are eight songwriters including Ben, and several affiliate artists who they also work with. But the way in which they work has remained fundamentally the same. Once the team begin working with someone to write their song they are partnered with a songwriter who will work closely with them, both in person or online, over a number of sessions until their song has come to life.
“A lot of time the sessions
Photograph by Paul Abraham, contributed by Swan Song and Ben Buddy Slack
are based primarily around lyric writing. To create the music we ask people about their musical influences, we will talk about the songs they like, we might listen to them together.” Using these influences and the lyrics as a starting point the songwriter will begin work on the music, or ask another musician to do so if they are a better fit. But whilst for most people the main focus will be on writing the song lyrics, others may even write some of the music themselves. Likewise, whilst some individuals choose to sing their song, or ask family or friends to do so, others prefer to have one of the Swan Song Project team perform their song on their behalf.
It is perhaps surprising initially to learn that the majority of the songs are uplifting, and positive, but on reflection it is anything but. As Ben explains, whilst the context which leads to these songs being written might be difficult or sad, for example the loss of a loved one, or the recognition that it is their own lives which are nearing an end, the content is not. The songs that people want to write typically reflect on “the best things about life, telling the story of people’s biggest joys, and of their hopes.”
There have been many people and songs that have stayed with Ben over the years, but none perhaps more so than Alan, who he met on the first day he visited the hospice.
“Alan wrote a song for his wife called ‘Song for Ginny.’ He had motor neuron disease, and he’d lost the use of his body, but he still had his voice, which is very important to him.” The song took a long time to write, and in that time Ben grew close to Alan, “we just got along really well, I enjoyed spending time with him, one-on-one.” And by the time Alan was ready to record his song it was clear to Ben just how important this whole process had been for him, how much it gave him, and the peace that it brought him knowing he was creating something meaningful to leave for his beloved wife of thirty-five years. “That really gave me the confidence I needed in the project.”
The early years of The Swan Song Project represented a steep learning curve for Ben, because whilst he had a wealth of relevant experience, he didn’t he explains, “have a lot of experience with people with really complex conditions, or people who were at the end of life.” Over time he recognised that he didn’t always have the tools he needed to work so closely with people that are living with a terminal illness, planning their end stages of life or dealing with a bereavement. Reflecting on that time he explains that one of the key things he learnt to recognise was that it was OK to ask people questions, to be open to their circumstances, and to be willing to try to understand. “Whilst I don’t know anything about what it’s like to be in their situation, just being accepting of that, and being willing to ask people and not having any kind of assumed knowledge was really important.”
A number of years ago Ben worked with a father whose son had committed suicide, when Ben asked him who the song was for, and who it was that he imagined listening to it, he replied explaining that
“I’m not worried about anyone else hearing it, it’s just for me to have something that I can sing whenever I want to feel connected to my son again.” For Ben this was a powerful confirmation of what he already knew, that “you can be anywhere, and if you can hear it in your head, or sing it to yourself, then you can always feel that connection.” Over the years the early confidence that Ben had in the power of songwriting to heal, to bring hope, and to create a lasting legacy has been carefully built into this utterly brilliant, life-affirming project.
Today Ben makes sure that his team are well supported, and The Swan Song project has five core values that form the foundation from which they work: optimism, creativity, trust, compassion and authenticity. The work they do is incredibly important to the people with whom they work, not just the individuals who choose to write their very own swan song, but their family, their friends, and the community around them. It is with them, and for them, that their memories and their “songs can last forever.”
Visit the Swan Song website
Visit Ben’s website
Would you like to write a Swan Song?
The Swan Song Project can help anyone living with a terminal illness, dealing with or anticipating a bereavement to celebrate life in a song. Sessions can be done over Zoom or in Person across Yorkshire.
Visit our website to find out more.
Listen to our podcast Available on all podcast platforms. Donate to The Swan Song Project
All donations help more people leave their legacy in song. There are many safe ways to donate through our website.
Photograph by Ceridwen Hughes
Finding Purpose
‘Loneliness is not the same as social isolation. People can be isolated (alone) yet not feel lonely. People can be surrounded by other people, yet still feel lonely.’
Age UK, Policy & Research papers
Social isolation and loneliness: how do we end up here in the first place, and what do these words mean?
The terms, which are often interchangeable, do not mean the same thing. Loneliness can be loosely defined as a person feeling they are lacking meaningful social connections in their life. It does not depend on the number of friends or connections they have, but rather the quality attached to these connections which fulfils the individual.
Social isolation is the opposite; it is an objective measure of the number of contacts a person has. Thus, solutions to loneliness require a person maintaining and nurturing quality connections with others, whereas solutions to social isolation require a person to be exposed to a larger amount of people.
Today both have become something of a hot topic, yet many find it hard understand how anyone can possibly feel alone in the digital age. After all, we can call and text loved ones
whenever we want, or connect with those sharing similar interests to us on social media, and even find information about group meetups that are happening in our local area online. So surely now, more than ever before, it’s easy to expand our social circles?
This misconception is common, but it is harmful. Whether it’s due to lack of internet and online experience, financial struggles, mobility difficulties or mental health issues such as social anxiety, there are plenty of reasons why someone might struggle with social isolation, or still feel lonely despite having access to a social network. The population of those who identified as lonely in the UK has been steadily increasing since 2022, and it’s time to talk.
Well-meaning advice columns all give similar tips. The standard advice boils down to making more eye contact, trying something new, gathering with others, smiling and finding your community. While these ideas are good when faced with social interactions, they are not practical solutions which help get individuals into social settings where they might use them.
So, how do you find your community and meet new people? Here is our beginners’ guide; these tips only scratch the surface, but we hope they give you a solid foundation with which to make pragmatic moves towards feeling more connected, less alone and more socially fulfilled.
CASE
STUDY A:
Storyhouse Chester
Nestled in the heart of Chester, Storyhouse Chester is proud to declare that ‘This house is your house.’ Storyhouse is a charity, and it incorporates the main Chester library, theatres, an independent cinema, a restaurant, and is a community and creative social space. Open Monday-Saturday 8am-11pm and Sunday 9:30-11pm the extended hours allow for quality social immersion, or simply a long time for browsing books and people watching. The library boasts coworking and reading spaces, as well as the usual computers and printers. The tech coaching services Digital Buddies and Digipal are free to book and run throughout the year, every year. The community events are shining examples of what a warm, shared community space can offer those who may be feeling socially isolated. Examples of these events include Family History Buddy, Scrabble Club, Bereavement Help Point, Chatter and Natter, Write Here Write Now, the Friday Uplift Group and Sew Cool.
Visit www.storyhouse.com
Photograph by Ceridwen Hughes
Libraries
Starting out strong, we highly recommend libraries. What is on offer at your local library does tend to be subject to a bit of a postcode lottery, as do a lot of local services throughout the UK. But if nothing else they are a brilliant place to start looking when trying to find things to do, and other people to interact with in your local area.
Libraries run all kinds of events. From book clubs, language learning clubs, knit and natter groups through to parent and toddler sessions. But there are more specific services run through libraries which are aimed at assisting older and younger people which, inadvertently, can assist in pulling individuals out of socially isolating situations. Lots of libraries run tech support groups, as well as one-to-one sessions, which aim to help those who may not have access to a computer, or do not know how to use the internet, to learn these skills. Skills such as learning to send an email or using a volunteering job search website may seem small, but can make a huge difference to someone who has been unable to do these things before. We recommend searching, via your local council, for the one nearest to you and going from there. Libraries also tend to have a lot of physical advertisements in-house, such as flyers for local community groups or library specific events they plan on running in the next few months, but there is also a huge availability of library resources to be found online. E-books, audiobooks, e-magazines and other online resources, all for free, these can help expand your knowledge of what goes on in your local area and increase your confidence in your own understanding of the environment around you. Libraries be the perfect space for those who struggle with social anxiety and/or social isolation.
Charities as local community meeting points
There are other ways to find the heart of your local community that don’t involve visiting the library. Charities are a brilliant way to meet other people in situations similar to yours, and they offer the opportunity to make new and lasting connections. A few of our favourites which we would like to mention here include the following: Maggie’s, a cancer charity which often holds events aimed at ending social isolation and loneliness for elderly people, linked here u3a, a collection of 1,000+ charities which provide opportunities for those no longer in employment to come together in local learning groups, both inperson and online, linked here . MIND, a mental health charity which holds regular free events, inperson and online, aimed at improving locals’ mental health, linked here . And last but by no means least, Age UK, a charity aimed at supporting older people which often runs local groups for those suffering from loneliness or social isolation, linked here
Internet Sleuthing
Two websites we suggest for those wishing to find people to connect with who share their specific interests are MeetUp and Eventbrite. Using the advanced search options on both these webpages, you can search for events
happening in your area, filter these by price (ranging from free upwards, depending on the activity itself) and see what is available locally to suit you. Eventbrite has its sights set on tackling the growing issues of our lonely generation and in 2024 EventBrite’s top advisors held their own Global Loneliness Summit, discussing current social issues and how Eventbrite (and similar platforms) have the potential to assist positive change.
These websites are accessible to those with an internet connection at home, or those who can access their local libraries. If you want help accessing the internet at home and would struggle getting to the library, phone them up and ask for advice, as they are most likely to be clued in on services available to assist you in your area.
Social media has issues of course, but it is a valuable search engine when it comes to finding groups, or other people who have similar interests to you. Use Facebook to search for local clubs/hobbies that you like (e.g. Violin Chester) or see what accounts your local council follows on X (formerly Twitter) as they will usually be following several local charities and community projects. Using your best sleuthing skills, don’t be afraid to do a little digging, ask questions, and use keywords to find what you’re looking for.
Photograph by Yazid N, Unsplash
Visit Eventbrite
Visit Meetup
Social Media
Music Therapy
According to music therapist Karette Stensaeth, the opposite of isolation is sometimes described as participation. For those who find social participation challenging, and are unsure how they can carve out positive social interactions within their community, attending music therapy might just be a unique and creative solution. Music therapy empowers the individual to be part of something bigger than themselves, and can be used to heal trauma, build resilience, advocate for the individual and for social change, foster and support social connections and normalise mental health issues. It also helps those who struggle with social anxiety release and discuss their emotions, improve communication skills and boost overall mood. It’s not just an individual therapy either; community music therapy in the UK is on the rise and offers a chance for those who feel isolated to show who they are and why they matter. As you can imagine, this is empowering and an excellent way to expand social connection and decrease feelings of individual loneliness. You find a centre or music therapist through your GP, local mental health services or through a charity.
Whether it is quality of connection you’re looking for, or increased quantity of available connections, there are ways in which you can overcome your current situation, no matter what limitations you feel are holding you back. If you are feeling lonely, please remind yourself that you are worthy of a support network. You deserve to feel loved, appreciated and part of the world around you.
Photograph by Akshar Davem, Unsplash
Case Study B: Alan John Wells and patient Shona
During his yearlong music therapy trainee placement at a dropin centre for adults with disabilities, Wells worked with Shona, a patient with cerebral palsy. Shona had limited communication skills and movement, which made Wells hesitate to offer music therapy, and yet he decided the participatory element would be a huge benefit to Shona’s confidence and could help her be less socially isolated.
The therapy was given as follows: exploration in individual 1-to-1 sessions, developing companionship through music, adaptations (group work) and continued development through performance. Shona summarised her experience as positive, explaining “I loved being part of music therapy … music therapy made me feel like I could be involved in other projects … I am very proud of the work we did together.”
You can read more about John and Shona by reading ‘Finding a pathway through music therapy: Supporting a woman with cerebral palsy to access her community’ here
All photographs courtesy of Nick Kelly
PASSION. PURPOSE. PRODUCTIVITY.
In conversation with Nicholas Kelly, MS, RD, LD, Dietitian, Motivational Speaker, Artist & Cystic Fibrosis Advocate.
“As an infant I had a lot of ‘failure to thrive’ type of symptoms in my growth and development, and I was sick and spent a lot of time in the hospital.”
When Nicholas (Nick) Kelly was three months old his mother diagnosed him with cystic fibrosis (CF). She had grown increasingly concerned about him, and after doing her own research she felt strongly that the symptoms that she was seeing in her baby boy suggested he had CF. Getting an actual diagnosis, however, was not straightforward because as Nick explains, “back when I was a kid CF wasn’t tested for as often, but the interesting part of my story is actually that 37 years ago they didn’t think African Americans could have the disease, so no one would test me for it.” His mother persevered, however, and the diagnosis she had made was eventually confirmed.
Nick has both an older sister and a twin sister, and after his diagnosis his mother had decided to train as a nurse, and so in those early years their family life was very busy. Managing his CF was just part of the daily routine, an integral part of the fabric of all of their lives. Neither of Nick’s sisters have CF, because although it is a genetic disease, which means it is inherited, a child needs to have inherited a CF gene from each parent to have the disease. Apart from identical twins, siblings, including non-identical twins, only share about 50% of their genetic material.
So whilst a sibling might well be a CF carrier, they will have only inherited the gene from one parent, if at all.
“The understanding that was kind of reinforced in my household was that I just had something that required me to do a little bit more than others, and even my ‘PD time’ was made into a game that we would call ‘Who can hit Nick the hardest!?’” PD means postural drainage, a respiratory therapy technique where someone helps by clapping, or in Nick’s siblings case - ‘hitting,’ or vibrating the person’s chest to try to dislodge and move the mucus and secretions from the lungs. Likewise, when he had to take his daily pancreatic enzyme capsules, which need to be taken before every meal or even snack, he turned it into a game. “So each one of those things were just really part of the things you have to do. You wake up, you brush your teeth, you wash your face. For me I wake up, I brush my teeth, I wash my face, and then I do a treatment. So it’s just part of the daily routine, and even though it’s an extra step it’s not like it’s something totally different and for me, that really made the difference and I didn’t really look at it as having a rare disease or chronic illness.”
Reflecting on his childhood Nick notes that it wasn’t really “till I got older that I started to realise that I was sick.” He clarifies further, explaining that; “I knew I had an illness, but part of that is from when I had open heart surgery when I was five, and I spent six months in the hospital. The hospital journey has always been part of my life, so that part I understood.”
In a way his personal rare disease journey, and indeed his own greater understanding of his CF, came at around the age of six years old when he attended a summer camp with other people living with CF. The time spent with other people gave him some invaluable insights into the different presentations, progressions and indeed stages of the disease.
It is very important that people living with CF have a balanced and nutritious diet, and that they try to maintain a healthy body weight. In part this is because the build-up of mucus in the pancreas restricts important enzymes from reaching the stomach, which in turn impacts on the body’s ability to properly break down food, meaning vital nutrients are lost. In addition, people with CF often require more energy (calories) as the CF itself can increase the body’s use of energy. It would be easy to assume therefore that Nick’s decision to become a dietitian was prompted by his CF, but in fact as he explains, it was almost by chance that this was where his life took him, as he had been sure he would work within the field of computer technology. “I went to Bowling Green State University with my twin sister Nicole. Nicole was a nursing major, and so she had to take an ‘Introduction to nutrition’ class, but she didn’t want to take it by herself. She asked me to take it with her, I told her ‘absolutely not.’ A couple of days later she came back with a proposal; ‘if you take the class I’ll help you, I’ll take your test and do your homework, all you’ve gotta do is come to the in-person classes.’ That sounded like a great deal,
so I went to the class the next day. As I sat there and listened to Dr. Joe I just remember being in awe of the impact of nutrition, and I literally walked out of class and called my mom. ‘Mom, how would you feel if I was a dietitian?’. I changed my major the next day. The punchline of it all is that my sister hated the class so much that I ended up doing most of her work.”
Trusting and following his heart was the right decision for Nick, and after successfully graduating with a Master’s degree in Food and Nutrition he became a registered and licensed dietitian, and worked in the field of dietetics for a number of years. He also worked as a professional dancer, one of the many creative passions that has underpinned his life. Nick began speaking in public in 2013, and in 2019 he once again followed his heart, and his instincts for what was important, and left nutrition to begin public speaking full-time. As a young adult he had at times felt that he didn’t want his CF to define him, and it wasn’t something he talked about or focussed on. However, everything changed after the loss of one of his dearest friends, a girl called Shelly who he lovingly refers to as his ‘cyster,’ a term he created to both reference and honour their shared cystic fibrosis journey. “Growing up, she always would tell me that ‘talking really helps’ or she would say ‘Nick, tell your story, you could really help somebody,’ but I never had any interest. She’d just keep telling me that ‘you could be the difference. Tell your story.’ But I thought that there were other people who were doing that, that I didn’t need to. I also told her that I didn’t want to be defined by CF, that I was ‘ just Nick’ so I’m not telling my story. When she
passed, I was so broken that I started telling our story as a way to heal. So it’s funny, because all those times that she told me to ‘tell your story, you could really help somebody,’ I never thought it would be me who I was helping.”
Nick started speaking at a number of different events, but it was his first paid public speaking engagement at the Ascension Sacred Heart hospital in Pensacola, Florida that cemented his new path in life. “There were probably about forty people in the audience, and it was my first paid speaking engagement, and when I did it, it just felt right.”
Often it takes courage, and the support of your loved ones, to truly take the leap into the unknown and to embrace big life changes. And this was true for Nick, who explained how “even after it felt right, I still was apprehensive until several engagements later, when my mom had come to see me speak. After she saw me speak she said ‘Nick, I feel like you have found what you’re supposed to do. So don’t worry about anything, I know it’ll take you time to find your feet, but I got you, you just focus on this.’ When that happened, I felt like I had been given the green light to just go full force, head on into it, and I did, and I haven’t looked back since.”
Nick with Shelly on her wedding day
Today Nick lives an incredibly full life, and is, he explains, lucky enough to live a life in which he follows and combines his passions; working flexibly as a dietitian offering consultations in nutrition, a motivational speaker, an artist and a CF advocate. He draws on his personal experiences to inspire others to live their lives to the utmost, to maximise their full potential, to use their innate skills and strengths, to remain focused and positive, and to always advocate for themselves and others. To do this he has created what he calls the ‘3P’S Method,’ which he shares with the world through both his public speaking and through coaching. The ‘3P’s Method’ educates and encourages people to understand how “finding passion and utilising purpose increases productivity across different spaces. It’s about
understanding the impact passion can have in one’s life.” He breaks it down further, clarifying that “I look at passion as the internal drive, and at purpose as the external display of passion. When you look at those steps it is the external display that leads to an increase in productivity and it is that, I think, which drives, motivates and invigorates individuals to challenge themselves, to be more and to do more.”
Despite his early reticence, or perhaps because of it, Nick has gone on to become an integral part of the CF community, something he truly values. “I am proud to be seen as one of the faces of my community because I feel I’m in a unique position to make a difference. With my life experiences, and because I am a clinician, and the fact that I am a minority with this disease in addition to which I also have a rare mutation of the disease.
Each one of these facts, coupled with the fact that I am an outspoken voice, and I’m able to articulate some of the things others may not, really allows me to be one of the faces of cystic fibrosis.”
What is truly striking about Nick is the way that he always uses the challenges that he might face to be the catalyst for change. A great example of this was when he explained how after twelve years of dancing his body was tired, so he had decided to retire from dancing professionally. Instead of feeling any sadness, however, he embraced the opportunity that it gave him to “focus on other passions. I started to focus on my photography more. I started doing more DJing, I started speaking more. So it just gave me an opportunity to focus on different parts of my passion.” It is this, more than anything else, that truly sets him apart, his belief in the power of following your passion, and his ability and his willingness to literally practice what he preaches. “I tell people all the time that I’ve been blessed enough to find multiple passions, and patient enough to perfect them. Passion is something that I thrive on, it’s something that I pride myself on, and more importantly, it’s something that I stand on. For me, passion is the single greatest and single most important thing a person can have.”
See more of Nick’s work
About Cystic Fibrosis (CF)
Cystic fibrosis is an inherited, genetic, progressive disease that primarily affects the lungs and pancreas, and other organs. Although it is an inherited condition often a family will have no history of CF before their child is diagnosed. This is because a person who has only one CF gene is called a CF carrier, but typically they are healthy and don’t have the disease or know that they are a carrier of the disease. A parent can unknowingly be a CF carrier and pass the CF gene on to their child, and if the child inherits a CF gene from each parent then they will have the disease.
CF causes a sticky mucus substance to build up in both the lungs and the digestive system, causing lung infections and problems with digesting food. The symptoms an individual will usually start in early childhood and will gradually get worse as the lungs and digestive system become increasingly damaged. In the UK and the US most cases of CF are picked up at birth using the newborn screening heel prick test, but tests do not always pick up the rarer gene mutations, which can be harder to diagnose.
Whilst there are treatments that can help reduce problems caused by CF there is no cure. Find out more
What We’re Into
Strictly Amy - Cancer and M e
Since the very first season back in 2004 Strictly Come Dancing has become something of a staple of family television, not only in the UK but around the world, after the format was successfully exported to 60 other countries. It is no surprise perhaps that over the years the professional dancers have become much loved and treasured national celebrities, and none more so in recent years than Amy Dowden.
Raised in Caerphilly, Wales, Amy has a gorgeously accessible and down to earth manner but is also just as beautiful and glamorous as you might expect. It’s not hard to see why she became such a loved member of the Strictly team. It was therefore a shock when in May 2023, at just thirty two years old, Amy shared that she had been diagnosed with grade three breast cancer. Within just a few days she decided to allow a film crew to follow her as she began her treatment; from mastectomy surgery, after
which she discovered that tumours had spread, and another type of cancer was discovered through to the subsequent need for chemotherapy and invasive fertility treatments.
In ‘Strictly Amy: Cancer and Me’, we follow Amy as she navigates the most difficult and turbulent year of her life, lovingly supported by her family and friends but ultimately facing her own, awful, cancer journey. Because she is so familiar to many of us it feels like you are watching a friend, and her openness and honesty gives a very real insight into a life lived with cancer. It’s not always an easy watch, I absolutely cried with her, but it does such an important job of reminding us all why we should be vigilant and #checkyourchest
Watch on BBC iPlayer
4LOVE
In May 2024 Film4 and Channel4 released a brilliant new Short Film Collection called 4Love. Film4 worked alongside 104 Films, one of the leading production companies currently working with deaf, disabled and neurodivergent talent in the UK, to commission the four short films. The films represented a brilliant opportunity for disabled creatives, from writers, actors, filmmakers and producers, with a variety of backgrounds and experiences including theatre, TV and comedy, to tackle the broad theme of ‘love.’ The short films each offer a unique and diverse perspective on love, and the different ways in which this is dealt with means that there is something for everyone in the series.
BATTERY tells the dark, foreboding and ultimately devastating story of Elliot and Aaron, whose wish to be together in a world devastated by a climate crisis puts their lives in danger. Acting as a stark relief to this dystopian future the more upbeat MO <3 KYRA short is a loud, bold and colourful comedy which takes place during a high school prom and is full possibility and hope.
PYRAMID OF DISUNION cleverly combines both humour and beautifully shot, seemingly bucolic scenes to reflect on the importance of self-love and self-worth in the journey towards finding inner peace. In DOPE FIEND the loud, jarring and chaotic inner world of a neurodiverse woman is brilliantly introduced by surreal, clever filming and storytelling, and the growing sense of overwhelm you feel as a viewer is a brilliant way to gain some insight to what life can feel like.
Watch on Channel 4 Watch on Youtube
The Covenant of Water by Abraham Verghese, published by Grove Atlantic.
When I picked up ‘The Covenant of Water’ I knew nothing about it beyond the fact it was written by the same author who wrote ‘Cutting for Stone.’ As Abraham Verghese is a medical doctor as well as an author it was perhaps to be expected that his beautiful new book would be threaded through with medical themes, but it still surprised me how beautifully and effectively it was done. The book tells the story of three generations of an Indian Malayali family living in southwest India, in what is now known as Kerala. As the story spans the years from 1900 to the 1970s it reflects the profound changes that occurred within both India and the world during that time; politically, socially and medically.
In the beginning of the book 12-year-old Mariamma, a child bride who is forced to move away from her family to marry a 40-year-old widow, is only vaguely aware of the whispers about the ‘condition’ which overshadows her new family. This ‘condition’ causes at least one member of each generation to die by drowning. By the end of the book however her granddaughter, named in her honour, has promised to dedicate her life to the study and practice of medicine in an effort to finally understand the medical condition with which her family has always struggled. The condition is revealed to be Von Recklinghausen Disease, now more typically referred to as Neurofibromatosis, or NF1. Congenital hypothyroidism and Leprosy are also interwoven into the story in both heartwarming and heartbreaking ways, adding depth to the portrait of not only the family but the society and times within which their story is told.
Overall I loved this book, a carefully crafted novel with rare diseases, and the many different and unexpected ways they can affect families, kept firmly at its heart. And whilst at times the ways in which the rare diseases are described can be jarring, they are appropriate to the historical and social contexts in which they are portrayed. An engaging and truly engrossing read!
Bruges Beckons
An Accessible Stay in the Enchanting Belgian City
Bruges, with its remarkable UNESCO World Heritage listed city centre, has managed to retain its medieval charm while evolving over time, making it a city of historical significance, beauty, and art that is worth visiting today. Often referred to as the Venice of the North due to its numerous canals, it is also renowned for its chocolate and beer.
The city hosts its renowned winter festival, Winter Glow, from November to January, during which the city comes alive with a whimsical light trail. This is a magical time to visit, with the picturesque gingerbread-like buildings and the aroma of warm hot chocolate and waffles filling the air - a true feast for the senses. The floating ice rink on the Lake of Love ‘Minnewater’ is a crowd-pleaser for both the young and the old.
Be aware that despite being accessible, as a medieval city a lot of the historic centre of Bruges is cobblestones. Visit the Bruges Tourist Board website which has an accessible guide to the city.
Photograph by Xandro Vandewalle, Unsplash
THINGS TO DO
Bruges will not disappoint you and there is plenty to keep you occupied. We have listed three of our top activities that you should try.
Church of Our LadyConstructed primarily between 1270 and 1280, the Gothic style Church of Our Lady in Bruges is a testament to the architectural prowess of the time. Standing at 115.5 metres, it is the secondhighest brick tower in the world. While the church is always open to visitors free of charge, those wishing to visit the museum section and the mausoleums need to purchase a ticket at the Museum pavilion first. Michelangelo’s Madonna and Child (1501-1504) is here, it was the first by Michelangelo to leave Italy during his lifetime, it was bought by Giovanni and Alessandro Moscheroni, wealthy cloth merchants from Bruges. The museum has an accessible entrance on Guido Gezelleplein Street.
Find out more
Brewery tour
-
Located in the heart of Bruges, Bourgogne des Flandres is a great brewery to visit. Venture through the brewery and distillery and immerse yourself in the scents of the brewing process. Cap off your visit with a complimentary Bourgogne des Flandres beer or gin, all while enjoying a unique view of the Bruges canals. The brewery, restaurants, and meeting rooms are designed with accessibility in mind, making them easily navigable for wheelchair users or individuals with mobility challenges. Furthermore, most of the brewery tour is also accessible.
Gastronomic Tour -
A Taste of Bruges, there are many tours available but we recommend the Gastronomic tour. It is fully accessible and you have the benefit of a local guide taking you to the most delicious venues around the city, trying frites, beer and chocolate plus much more. This tour is a ‘pay what you like tour’ so there is no upfront cost as the tour company want everyone to enjoy their tours no matter the budget. All food/drink samples are included. We recommend booking to ensure your place so you can discuss your requirements.
Find out more
Photograph by Maddy Meng, Unsplash
MUST SEE
Historium Bruges
The Historium will take you back in time to ‘The Golden Age of Bruges’ and is a must-see for any tourist. Offering an immersive journey into the city’s medieval past it is conveniently located at Market Square. It is easily accessible for all visitors, including those with mobility challenges, thanks to its well-designed facilities. Highlights include the Historium Story, where you can follow a captivating narrative through themed rooms with stunning visuals and special effects. Don’t miss the Virtual Reality experience, which allows you to soar over medieval Bruges, and the Historium Tower, providing panoramic views of the city. With its engaging exhibits and accessible design, the Historium ensures a memorable and inclusive experience for everyone.
Find out more
Photograph by Dan V, Unsplash
WHERE TO STAY
Bruges hotels range in style from contemporary to traditional and everything in between. Many of the historic buildings in the centre have been repurposed into beautiful lodgings to stay during your visit here. We have chosen three of our favourites, each offering accessible rooms, but as always, please speak to the venues to discuss your requirements to ensure that they meet your needs.
Hotel Sablon
This contemporary hotel is nestled in an ideal location and is just a stone’s throw away from all the major attractions, shopping centres and eateries. Despite its central location, it enjoys a tranquil setting on a peaceful street, away from the bustling crowds and noise. The hotel exudes charm, boasting a stunning outdoor courtyard and exquisite design elements scattered throughout the premises. It basks in an abundance of natural light, thanks to its excellent indoor and outdoor seating arrangements. The staff are welcoming and always ready with a wealth of suggestions and recommendations for dining and more. The rooms are not only spacious but also beautifully decorated, enhancing the overall charm of the hotel.
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Hotel L’orangerie
Hotel de Orangerie, a charming boutique hotel, is centrally situated on the scenic Den Dijver canal. It’s conveniently within walking distance of shops, cafes, historic squares, and the town centre. This hotel, sympathetically restored and renovated, provides a beautiful base for your stay in Bruges. The hotel takes pride in its 20 uniquely styled rooms, each boasting individual charm. Positioned right on the most picturesque canal of medieval Bruges, Hotel de Orangerie lies at the very heart of the city centre. This quaint 15thcentury monastery of the Sisters Karthuizerinnen has been transformed into a splendid “boutique hotel”, adorned with exclusive fabrics and antiques.
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Grand Hotel Casselbergh Bruges
This beautiful hotel opened in 2009 and was recently luxuriously renovated in 2021. The Grand Hotel Casselbergh provides guests with luxury and comfort. It is situated in a highly enviable location, nestled in the heart of the historic centre, it’s a mere 150 meters from the main market square, the town hall, and the Burg, making it the perfect base for city exploration. The hotel has an amazing history dating back to the 1300s including being the home and court of the exiled King of England Charles II from 1659 to 1659. This hotel is a touch of class and luxury that makes your stay memorable.
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Photograph by Kirill Bobrov, Unsplash
WHERE TO EAT
There is no shortage of places to grab a quick bite, a beer or a full culinary experience here in Bruges. Belgium is famous for its waffles, delicious chocolate, and beer, but they are not the only culinary highlights available. If you have never tried the hearty flemish stew (known in Dutch as stoofvlees or stoverij, or in French as carbonade flamande) it is a comfort food that you must try, usually accompanied by the crispiest Belgian fries.
Bij Koen & Marijke
This unique wood-fired grill restaurant in the centre of Bruges is like visiting family for some good food and company. Bij Koen & Marijke is renowned for its exceptional use of a wood-fired grill, which imparts a unique, smoky flavour to its dishes. The menu showcases a variety of locally sourced ingredients, and diners can enjoy a selection of artisanal beers that perfectly complement the food. The staff are so knowledgeable about what pairs best and will happily help. This combination of traditional cooking methods, a carefully curated menu, and a welcoming ambience make Bij Koen & Marijke a must-visit for food lovers seeking an authentic Belgian dining experience.
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Otto Waffle Atelier
Belgium is synonymous with waffles and Otto Waffle Atelier in Bruges is a must-visit for waffle enthusiasts. Renowned for its artisanal Bruges waffles, using local and sustainable ingredients it crafts unique lace-shaped waffles adorned with seasonal toppings. Notably, their waffles are gluten and dairy-free, ensuring everyone can enjoy them. It has garnered rave reviews for its friendly staff and delectable waffles, making it a beloved destination for both locals and tourists.
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This restaurant is named after the painter Pieter Pourbus, who lived in the house the restaurant now occupies, which was built in 1561. It is in the centre of Bruges and its cosy interior with its two open fires are very inviting and welcoming. The menu features a mix of Belgian and European cuisine. They have a variety of options, including à la carte dishes and seasonal menus.
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Restaurant Pieter Pourbus
Photograph by Sane Seven for the Make Seconds Count secondary breast cancer awareness campaign in 2021
The Three Fs. Friendship, Financial Support & Fighting to be Heard
In conversation with Kathryn Gordon Orr, Chair, Trustee & CoFounder of the Fighting to be Heard Foundation
“We created the campaign image and the photograph went viral. We had it on billboards right across the UK, we created hoodies and t-shirts and asked about 120 influencers I know to support the campaign and to share the image. The traction it gained was just incredible and the hashtag #fightingtobeheard was everywhere.”
The stories that lie behind new charities are often incredibly powerful and deeply compelling, a testament to strength, to hope and to love.
Kathryn Gordon Orr, known to her friends as Kate, is the chair, trustee and one of the cofounders of the Fighting to be Heard Foundation (F2bH), a secondary breast cancer charity.
F2bH was officially launched in March 2023, following a hugely successful awareness raising campaign which gave the remarkable women involved the unique opportunity to be both heard, and to help others on the same journey.
Kate’s background is in marketing and business development, and in 2018 she found herself working alongside another Kate (Kate McIver) at her eponymous skincare company. In March 2019 Kate M, who had been diagnosed with cancer in 2016, died of secondary breast cancer at just thirty years old. Kate recalls “I’d gone through a horrific journey of watching this young, beautiful woman die and it was horrific, to be honest with you. I had never heard of secondary breast cancer, and when you get pulled into a world which you’ve never heard of, and when you’ve seen someone struggling to be part of the world still, to matter. It is hard, after experiencing her passing, and the tragic loss for her family, her friends and everyone who loved her I got involved with some of the breast cancer charities to help honour and support her legacy.”
Kate M’s skincare company used to donate products as well as some profits to a brilliant campaign charity called CoppaFeel! (linked below in our Contact & Information section) and was also involved with Make Seconds Count (also linked below), a secondary breast cancer charity and support organisation launched by the wellknown cancer campaigner Lisa Fleming.
When Lisa approached Kate about creating an awareness raising campaign for Make Seconds Count she knew that with her background in sales and marketing, as well as her previous experience as an advertising director, this was something she could do.
“I pitched the idea to create an image to convey a ‘Fight to be Heard,’ an image that would convey a united voice. As although we know, from feedback gained from the community, that an incurable secondary breast cancer diagnosis feels like you are defeated, we could still fight for change, for awareness, for more lines of treatment. I explained that knowing that what Kate M had, and what you have, is incurable means you’ve already lost. Many people commonly refer to battling cancer, but with incurable secondary breast cancer individuals have shared with me that they feel defeated, that the cancer has already won. However, as I said to Lisa ‘your voice is not lost, you are fighting to be heard and fighting for change,’ I’m just a witness to the injustices this community has faced, and so the idea grew from there.”
Kate contacted Sane from the powerhouse that is Sane Seven, a highly respected professional portrait and advertising photography agency in the UK which had shot a beautiful portrait of Kate M in early 2019, just a couple of months before her death. With a background in campaign photography and a commitment to amplifying and celebrating women’s voices, she immediately agreed to take part. Lisa used her contacts at Make Seconds Count to find models and in September 2021 twenty women, all living with incurable secondary breast cancer, assembled in a boxing gym in Liverpool, but as Kate explains, what none of them had known was that during this one, amazing day they’d “form this precious group of relationships, becoming friends from that day on.”
Kate continues, explaining that as “it was just post COVID, there was a lot of fear about travelling still, and some of them hadn’t really been part of a community before or met other secondary breast cancer patients, but these women came together and it was magical.”
Kate Rackham & Kathryn Gordon Orr, photograph supplied by Kathryn Gordon Orr
She’d used her contacts to ensure that every woman had her own make-up artist for the day, and she’d managed to involve some big name brands, and so as well as robes to wear on the day they received beauty boxes and gift bags to take home. There are behind the scenes photographs from the day both on the F2bH website and on their social media platforms, and the warmth, the love, the joy and the pain of the day are evident to see.
The resulting photograph, pictured here with the kind permission of all involved, is incredibly powerful. Twenty women, a boxing ring behind them, their hands bound ready to fight but hanging loosely by their sides are dressed all in black, and stare solemnly into the lens. It is clear to see just why the image created such a strong reaction, starting an important conversation and successfully launching what went on to become
the viral #fightingtobeheard campaign. When Sane Seven shared the campaign on Instagram they wrote that “photography is more than just a picture worth a thousand words. It is often the reason for stories to be newsworthy again. In this case, it’s a story about 20 women with secondary breast cancer, hanging their gloves in an unfair fight that they cannot win.”
What is harder to contemplate is the devastating fact that as the years pass, this photograph will help to make the reality of incurable secondary breast cancer become newsworthy time and time again. Kate explains how, “twelve months later the image had to be edited when we used it in October 2022 as part of the annual breast cancer awareness campaign, because by then five of the women had died. So the picture started to really tell the story a thousand words couldn’t, and we didn’t really
have to say anything, instead we had the image edited by one of Sane’s friends from Vogue, who also put it in video form, with those who had died changing colour to greyscale. The campaign became even more profound then, because it so clearly showed that in just twelve months five women had died.”
When asked if the image would once again be revisited, edited and shared this year to reflect the passing of more of the original twenty models Kate is visibly upset and explains that in the past few months two of the three main cofounders of F2bH, Gill Cory and Kate Rackham (Kate R), with whom she had become close, have died. Losses she is still struggling to come to terms with. When they all first met in September 2021 none of them perhaps imagined that the bond they felt on that day would develop into important, real-life friendships.
Suzanne Williamson Cavanagh, Sarah Larner and Kate Rackham, photograph supplied by F2bH.
Photograph of Gill Cory, supplied by F2bH
Over the next year they stayed in touch, and, as Kate explains, there was one person in particular, a woman named Sally Nyland, who would send texts most days, and who became something of a matriarch to the group. “Everyone could rely on her, and she was a philanthropist. Sally would do things to help families in the group without anyone knowing. She was very special.”
In September 2022 Sally died at the age of forty-six, and at her funeral, Kate explained “a group of us sat together, and we said why don’t we create a charity in Sally’s spirit? We knew she’d helped so many people, and we knew that with the cost of living crisis, many in the secondary breast cancer community were struggling. We just wanted to do something, to be able to help a little. There were no great aspirations to be this huge, big charity, but we wanted to be able to give some funds to a family that needs it, and so that’s how it started.”
Initially those who could raised funds by undertaking various challenges. Kate walked the 48 miles between Blackpool Tower and St Johns Tower in Liverpool with a group of her friends to raise money that they could distribute to those who needed a little help that Christmas. Her fundraiser was shared on Radio City by DJ Leanne Campbell, who had been close friends with one of the five women who had passed away, Suzanne Cavanagh. After Kate and her friends appeared on the radio during their walk things quickly gained momentum.
“We got a lot of traction, and we raised quite a lot of money, but we weren’t yet a charity then, we had just raised funds for the women in the group. But then I got a phone call from my friend Seema (Malhotra, founder of fashion brand Forever Unique and star of Reality TV show Real Housewives of Cheshire) who explained that she had the opportunity to raise the profile of a breast cancer charity in the final episode of the sixteenth series of RHOCheshire which would air in May 2023.”
To take advantage of this opportunity, they would only have a short time to establish Fighting to be Heard as a proper charity; Gill Cory, Kate Rackham and Kate Gordon Orr decided to push forward with it. Within just nine weeks they’d created a website, established a trustee board, drawn up all the necessary governing documents and registered with the Charity Commission. In March of that year, Seema and Forever Unique hosted a starstudded event which was attended by over 150 highprofile guests and included an exclusive performance by the singer Natasha Hamilton, and the Fighting to be Heard Foundation was officially launched. Talking about this time Kate becomes visibly upset once again, because as she explains “There were three founders who got it over the line, Gill, Kate R and me, and I’ve lost the two of them in just a few months.”
Gill passed away in April 2024, and Kate in June, and their losses weigh heavy on all of the F2bH foundation. In the last year of their lives
they had both dedicated a huge amount of their time and effort to the charity, and as Kate states, what they both did and achieved was truly remarkable. “They were remarkable. I always use the word remarkable because they had limited time. They both knew that they weren’t in the best of health when we started this journey. When we launched the charity Gill, who had taken on the role of Treasurer, needed to be helped to come down the catwalk by Kate R, who had become the Secretary. She had such terrible neuropathy that she could hardly walk, yet, she always just carried on. Kate was a force to be reckoned with; she had two little girls, and her time was precious, yet she chose to put some of her precious time into getting this charity off the ground because she really believed that people needed support, and that changes had to be made for secondary breast cancer patients. When Kate died her final tweet went viral. Kate, known as ‘Teacher with Cancer’ had written ‘If you’re reading this, it means I have died’ and it was shared across the media. She achieved so much.”
At the heart of their work are ‘the three Fs,’ friendship, financial support and fighting to be heard. It was, as Kate explains, friendship which was the catalyst for the charity, and today the charity provides a private Facebook support group and connects with those seeking support in person. They are currently organising some in-person events to further connect and support the community.
They are also in the process of writing a book, to share the story of how twenty women from across the country who came together for a photoshoot formed life long friendships, and found a shared purpose that far exceeded everyone’s expectations for the day, and ultimately led to the birth of F2bH. Since they launched in March 2023 F2bH has given out hundreds of grants, accepting applications for their annual summer and winter grant schemes. They also continue to look at new and innovative ways to raise awareness and to keep fighting to be heard. With the 2024 Breast Cancer Awareness month approaching Kate is trying to come to terms with the very difficult decision regarding editing, once again, the original Make Seconds Count campaign image. “We know it would be the natural thing to do because the impact of the image becomes even more profound as people pass away. We will have to speak to the families, and I don’t think it’s right at the moment.”
Since its official launch F2bH has been run by volunteers, many of whom have secondary breast cancer themselves. And, devastatingly, because of this their ability to be involved in the work of F2bH has a very real time limit. And so Kate, along with the trustee board, the volunteers, and also the partners and families of those they have already lost, are looking at the future of the charity. After the huge loss of Gill and Kate R the team at F2bH are beginning the work of looking into ways to ensure it can continue, both in honour of their loved ones, and for those who need them now and in the future. Reflecting on all they have achieved Kate explains that “I initially became involved to honour my friend Kate M, and then I met this most remarkable group of women for a campaign, and we ended up becoming a charity through our friendships.” It is through their individual friendships, and with the support of their families and the communities around them, that these remarkable women, many of whom are living with incurable secondary breast cancer, will continue to keep Fighting to be Heard.
Kate at the Merseyside Women of the Year awards, photograph supplied by Kathryn Gordon Orr
About secondary breast cancer
Secondary breast cancer that starts in the breast is called primary breast cancer. Many people assume that ‘Secondary breast cancer’ refers to a reoccurrence of the breast cancer after an initial successful treatment. However this is not the case, secondary breast cancer, also known as metastatic breast cancer, or advanced breast cancer, is what occurs when breast cancer cells have spread from the breast to other parts of the body
For many people, primary breast cancer never comes back after treatment. But sometimes cancer cells do or have spread to other parts of the body, the most common places for breast cancer to spread to are the bones, lungs, liver, brain or skin, though this does not mean that secondary breast cancer will spread to all of these places.
As this secondary cancer is made up of breast cancer cells that have spread, it is referred to as secondary breast cancer.. Treatment protocols will also use the same drugs that are used to treat breast cancer, so for example a secondary breast cancer in the lung is treated as breast cancer, not lung cancer.
Information taken in part from the Macmillan Breast Cancer Support information and support resources.
About Fighting to be Heard
To find out more about Fighting to be Heard you can visit their website.
Visit Fighting to be Heard’s website
F2bH are working on a book, ‘Fighting to be Heard: A Tribute to Resilience’ which is available for pre-order, on their website here:
Read more about Fighting to be Heard: A Tribute to Resilience
To find out more about CoppaFeel! you can visit their website here:
Visit CoppaFeel!’s website
You can find out more about Make Seconds Count here:
Visit Make Seconds Count’s website
Personal Budgets – If your local council decide you, or your loved one, are eligible for help with any social care and support you are entitled to a personal budget. This funding can be managed by social services (a notional budget) or paid directly to a care provider or suitable organisation (a third-party budget), or you can opt to have the money paid to you as a direct payment (see below).
Direct Payments - If you, or someone you care for, has been assessed as needing support by social services, then you can opt to receive the funds for the support directly. This is known as a direct payment. You can then choose and purchase the services that are needed, instead of getting them from your council, as long as the criteria set by the social services team are met.
Personal Health Budgets – A personal health budget is similar to a personal budget but it is funded by the NHS instead. The aim is, again, to create individual choice and control over how, when, and by whom care and support are delivered. The recipient will also still have the option to manage the money as a direct payment, a notional budget, a third-party budget or a mix of them if preferred. Note: There are some key differences in how funding is offered in the different countries within the UK, which you can check with your local provider.
Independent Living Advisor – Different organisations might vary the breadth of the ILA role, but, in the main, an Independent Living Advisor is a person whose job it is to provide you with the advice and support you need to be able to set up and manage your social and healthcare funding appropriately. This can be overwhelming, especially if you are becoming an employer, so, amongst other things, an ILA might help to support with budgeting, recruitment and employment advice, DBS checks, support plans, and more.
Personal Assistant – It is often confusing that in the health and social care sector, the preferred term for a professional carer is often a personal assistant. A Personal Assistant, or PA, will often deliver support as well as care. For example, this might include personal care such as getting dressed or washing, help and support with taking medications, making meals, getting out into the community, and accessing activities, etc.
Meet the Professional
In conversation with Karen Smith, Deputy Chief Executive of The Rowan Organisation
Photograph courtesy of Karen Smith
“The whole point of having direct payments is so that you’ve got choice, control and independence, to make important choices about your own life.”
The Rowan Organisation is one of the leading providers of direct payment, personal budgets, and personal health budget support services in the UK, and at the very heart of their work is their commitment to supporting independence through choice. The organisation’s mission is simple: “To provide disabled people with access to information and support
so that they can make informed choices and be in control of their lives.” It is worth noting that although the mission statement refers to disabled people, the support offered includes not only disabled people, but also ‘families and children, older people, carers, and people with health needs from birth to end of life.’
Karen Smith is the Deputy Chief Executive of The Rowan Organisation, but when she first joined she was an Independent Living Advisor (ILA), and this was primarily the role we had planned to cover in this
edition of our regular ‘Meet the Professional’ feature. However, the work that an ILA does is, in most cases, supported by several other services which we reference.
The Independent Living Movement in the UK goes back to the late 1970s when many disabled people began to actively campaign for the right to make their own choices about how they lived, and how they were supported. By the late 1980s disability activists had begun campaigning for the introduction of direct payments.
Photograph courtesy of The Rowan Organisation
After years of lobbying and campaigning, the government finally agreed to create legislation on direct payments, which resulted in the 1996 Community Care (Direct Payment) Act, which came into force in early 1997. The Rowan Organisation were one of the first support organisations to be funded by some local authorities to offer support for people accessing direct payments. Indeed, as their website proudly explains, they were perfectly placed to do so, as “prior to 1997 we had been providing a Third Party Payment Scheme in Warwickshire since the early 1990s and as such have over thirty years’ experience of supporting people to use funds provided by the Local Authority.”
But what is a direct payment or a personal health budget? These payments, the differences between which are broken down in our glossary, are payments offered to individuals who need support services by their local authority and/ or health board. These payments are offered to allow people both choice and control over how they access the assessed support that they need. The Rowan Organisation breaks it down further, explaining, “The funding for your support may come from Direct Payments, Personal Budgets, Personal Health Budgets, or Self-funding. These are alternative ways of receiving support instead of, or in addition to, your Local Authority or Health Provider arranging services for you.”
Having the choice to arrange your own care and support, or to do so on behalf of someone you care for, is hugely important. It is also something about which the vast majority of us would know next to nothing, and this is why the ILA role was introduced, to help support people with what might otherwise be a hugely daunting opportunity. Karen uses the example of the elderly to explain more;
“people who would ordinarily be offered a residential placement following an assessment of their care and support needs might be offered a package where they’re offered the equivalent amount of money as a direct payment, and then they can use that to purchase the support needed that enables them to stay at home.” Some people might choose to purchase the support they need by contracting a care agency, but others might prefer to hire their own personal assistants (or carers, see glossary), and it is here that the ILA role can be truly invaluable.
An Independent Living Advisor is a person whose job it is to provide the advice and support an individual might need to be able to fully understand, set up and manage their social and healthcare funding appropriately. Once the agreement has been made that an individual would like to manage their own, or their loved ones’ care, then the agency that will be funding it would typically make a referral to the local support organisation to support this process. After the Rowan Organisation has received a referral, they will arrange for one of their ILAs to go visit the person at home where possible, and it is often at this first appointment that an individual might gain a more detailed understanding of both how their funding might work, and what the responsibilities are that come with it.
Unfortunately, as Karen explains, over the years “despite direct payments having been around for a long time now, there is still an urban myth that they’re overly complex and some practitioners
Photograph courtesy of the Rowan Organisation
lack confidence in the scheme so social services may look for a different solution first, and if it’s not found, offer a direct payment package. Then things are put into place very, very quickly, but the important detail is sometimes skimmed over. People need to understand the detail so that they fully appreciate what their role is, and what their responsibilities are as well. To know what a direct payment is, what the remit of that direct payment is, how it can be used, how it can’t be used, how it’s going to be assessed, and the eligibility criteria for funds to be used, because a direct payment isn’t just about someone being able to ‘choose their own PA,’ there’s a large amount of responsibility that comes with that. That’s where we can help, by providing person centred support to enable individuals to manage those responsibilities and providing them with the tools and resources to become more self confident, more independent and more in control of their own lives.”
The ILA will start by explaining or reviewing all the key responsibilities and concepts involved with becoming an employer with the individual or family they are supporting, as well as outlining how the whole process will work. They will then explore how the funding can be used to meet the outcomes that were identified within the assessment process and calculate the likely costs based on the different expenses associated with becoming an employer, i.e. the costs of insurance, annual leave allowances, NI contributions if needed, etc. Once these are in place, a possible salary range can be suggested. They will work collaboratively on drafting a suitable job advert, support in placing the advert and managing the applications. They can also attend and facilitate interviews if needed. Once a PA has been appointed, they can further support with right to work checks, obtaining references and DBS checks, as well as with setting up the payroll and banking services. Moving forward, they can continue to advise and support the individual to be a good employer. “Becoming an employer is a serious role, you have to abide by employment law and to do that you’ve got to understand what you need to do, so there’s a lot of preparation involved in terms
of making it a successful arrangement. So, as well as understanding all the key concepts, it is also understanding that along with the benefits of having a PA, you have the responsibility of ensuring that it works well and that the PA is well supported in their role as much as they’re supporting you.”
This is why, Karen explains, most local authorities and other funders tender out the ‘Support Service’ packages to organisations like the Rowan, to ensure that individuals and families are properly supported to be able to successfully manage their funding, and the responsibilities and commitments that come with it. Having the opportunity to have both control and choice over the services you use to meet your needs is incredibly important. However, as the funding is being given in lieu of the local authority providing the care directly, it is important to understand that the funds remain public money, and therefore they must only be used as agreed, by and for the person to whom the funding was awarded. At its heart the Independent Living Movement sought to ensure that those who need support should be able to have the choice and control to access that support in the way that they might wish to, to enable them to live independently, and with the support in place that works for them.
For Karen the key message is clear, “we need to empower people by providing information and support, and ensuring that they realise that they have a choice in how their care and support outcomes can be achieved, so that they can get the best out of their lives, and don’t put up with an arrangement that doesn’t actually meet their needs.”
To find out more about the Rowan Organisation you can visit www.therowan.org
To read more about the Independent Living Movement visit www.independentliving.org
WE ARE ALL EQUAL
Contributed by Marcus Mason-Williams
I have loved watching wildlife programs with my brother, who is now a zookeeper and conservationist, since I was very young. We share a large collection of wildlife books and nature documentary DVDs. My favourite presenters and heroes were (and are): Sir David Attenborough, Bill Oddie, Kate Humble, The Big Cat Diaries Team, Johnny Kingdom, Steve Backshall, Chris Packham and many more. Our holidays and days out have always been focused on wildlife and the natural world. We choose destinations based on potential wildlife sightings and, more often than not, have been rewarded with great sightings including whales, beavers, dolphins, bears and otters. I have always been passionate about birds and enjoy feeding them in our garden.
I started drawing when I was about five years old. The animal paintings by the famous French artist, Henri Rousseau, especially his colourful painting, Tiger in a Tropical Storm, motivated me to learn to hand draw animals using numerous “how to draw” books. School art lessons taught me to draw and paint people, but my main focus has always been wildlife. I enjoyed art and media at school for GCSE, but my creativity blossomed when I attended the Glasshouse College, Stourbridge (part of the Ruskin Mill Trust). The curriculum was a mixture of life skills training, plus hands on work on the college farm and with a variety of artisans, including glasswork, weaving, felting, willow work and iron age forge. After college I trained as a crystal glass cutter and was given the nickname: the Iceman, because of the ice pattern I cut in the crystal.
As this did not lead to permanent employment, in 2021 I decided to set up my own digital art business, CoolArt2021. I recently went back to the College to give a presentation about my business to the students and tutors. My love of wildlife continues to inspire most of my work, which now includes cartoons and book illustrations, as well as digital drawings of wildlife. Some pictures, like the goldfinch, come from my imagination and memories of sightings in particular locations. The goldfinch and the teasels, in my British Birds pack, were based on a sighting at Wildgoose Rural Training’s Nature Reserve, where I volunteer as a ranger. A framed picture of the goldfinch is on display in Bonnie’s Tearoom next to the reserve. Increasingly the subjects of my pictures are chosen by clients. For example, wildlife organisations, want to feature specific species: the kingfisher for The Rivers Trust; the European Bison for Kent Wildlife Trust and the chough for Cornwall Wildlife Trust.
All photographs courtesy of Marcus Mason-Williams
Other pictures are based on my brother’s photos. One of my favourites is my puffin picture, inspired by a photograph my brother took during a family holiday on the Isle of Mull. Indeed I often use photographs to help, for example with the kingfisher’s feather details and colours, and then use my imagination for the background. The use of bold colours is a key ingredient in my work; digital art software like Adobe Photoshop and Procreate is good for this. My pictures are made up of many layers. However, I also enjoy pencil drawings, which I used to produce my pictures of wild cats, such as the leopard and tiger. I recently met another local artist, Alexander Rhys Boardman who works on large canvases. We are going to work together on a project, using spray paint and brushes.
I had wanted to perform at school, but opportunities were limited. At the Glasshouse College this changed. I was encouraged to write and perform songs in an Awareness of Autism concert, which Robert Plant of Led Zeppelin attended! I also played the lead in Pericles, the Prince of Tyre. Since college I have loved performing live with Birmingham Rockschool in Kings Norton, I have performed twice at Anna Kennedys’ Autism’s Got Talent show, and sang my song about autism, I Feel Like A Warrior, as part of Special Olympics International’s Global Talent Showcase, which the Chair, Tim Shriver, loved. I have now written and recorded two songs about autism and my mental health that are available on the main streaming channels like Spotify. I am working with a song writing coach, called Henry Liggins, on two more. I met Henry through his work with Midlands Mencap.
I love being on stage, connecting with the audience and encouraging them to sing or dance along.
I have also written two books. The idea of the story of “Zooland: A Sign of Hope” actually originated when I was at school. I originally wanted to tell the story using stop motion animation, like Wallace & Gromit. However, making the characters out of clay and filming them was much more difficult than I thought. Whilst I still dream of making an animated movie, I now recognise that I need to take small steps. Writing the books and drawing the illustrations for them is that first step.
I want my stories to show that when you have a passion, talent and dream anything is possible. I wanted to portray characters from different backgrounds that are not normally seen together, for example a Horse and a Dragon, and autistic characters that display autism as a strength.
I wanted to highlight the value of friendship, courage and teamwork, and that men and women have different talents and strengths, but we are all equal. I also wanted to show that animals and humans work well together, and above all I want to make the world a better place for wildlife and the environment, as well as mankind.
In the future I would still love to produce an animated movie. I have had a taste of this through some initial training from an autistic animation company in the USA called Exceptional Minds. They are based in Los Angeles. I was unable to take part in their onsite courses because of the distance involved and unfortunately could not access their online training easily because of the time difference. I enjoy using the online training of Aaron Blaise, an ex-Disney animator and have had guidance from a UK cartoonist called Neil Kerber and the creative team of a PR company, called City Press, based in Manchester. I am learning to use a number of animation packages: Adobe After Effects, Flipaclip and Procreate Dreams. I have recently produced a short animation as a teaser trailer for my second children’s book: “The Horse and
the Dragon: Trials of Friendship”. I also added special effects and music (with the help of my music tutor, Henry).
I am one of the original members of Special Olympics GB and Coca Cola Europacific Partners’ Unified Business Project, bringing athletes who have their own business together with people from industry. Our first product even found its way to the Royal Household. I am also one of the founding members of the government-backed campaign called The Lilac Review, which is highlighting the value of disabled-led small businesses and the barriers they still face. This is being supported by Small Business Britain and Lloyds Banking Group.
I believe:
• in being my own boss and not having to satisfy someone else
• in being independent, because you did not think I was going to count on my parents forever, did you?!
• it’s not all about making money to me, it is about playing your part and trying to make the world a better place; and also trying, let’s say, to get people inspired
• in allowing everyone time to show that they have something to offer, whether it is little or big, as someone from Only Fools and Horses would say “who dares wins”
• just because things are difficult it does not mean they are impossible
• this is not the finish line; this is the start of the race. The future is the finish line and our combined skills and geniuses, working together, are just the thing to get us there
As well as my CoolArt2021 business I want to support and motivate other neurodivergent people like me. Art, storytelling and performing definitely set me free and help me to communicate. Communication has always been hard. People often do not speak clearly, speak too fast, say too much and ask too many questions.
Often it is younger and older people who are easier to understand.
Find out more
Visit Marcus’s website
Listen to Marcus’s songs on YouTube
Marcus’s songs are also available on Spotify, Apple, Amazon and other services.
Marcus works with a number of charities and organisations, but is especially proud to represent both the and Phab
Special Olympics
Great Britain
A Spotlight on History
In 2020 Same but Different embarked on a project to capture the experiences of some of the veterans who had been conscripted into National Service shortly before it ended in 1963. As well as in-depth conversations with veterans about their own experiences, the project was brought to life through a host of materials; from photographic portraits, recorded interviews and podcasts, personal photos and other memorabilia the exhibition has highlighted these historic times and stories for future generations.
National Service in the UK, also known as conscription, was introduced in 1947 and came into effect in January 1949. This policy required all able-bodied young men aged 17 to 21 to serve in the armed forces for 18 months, which was later extended to two years during the Korean War. The primary reason for implementing National Service was to address manpower shortages in the military following World War II and to meet the new geopolitical challenges of the post-war era, particularly during the early stages of the Cold War. Conscription lasted until 1960, with the last conscripts being discharged in 1963. Over 2 million men served in National Service.
There were exceptions to National Service, and certain groups such as the blind, mentally ill, and men in reserved occupations such as coal mining, merchant seamen and farming were exempt. Additionally, men from Northern Ireland were not conscripted to avoid civil unrest.
Many conscripts gained valuable life experiences, learned new trades, and formed lasting friendships.
The service also helped to maintain the UK’s military commitments abroad, ensuring a ready and trained force that could be deployed to various global hotspots. Additionally, it provided a sense of national unity and shared purpose during a time of significant international tension.
The experiences and sacrifices of these young men are an important part of British military history, and one which has only rarely been told. The physical and psychological demands of service, particularly in conflict zones like Korea and Malaya, took a toll on many individuals. During the period of British National Service just under 400 men died while on duty. These deaths occurred in various conflicts and locations, including the Korean War, the Malayan Emergency, and the Suez Crisis.
Upon completing their service, National Servicemen often faced challenges reintegrating into civilian life. While some were able to leverage the skills and experiences gained during their service to advance their careers, others struggled with the transition. The government provided some support, such as educational grants and job placement assistance, but the effectiveness of these measures varied. Despite these challenges, many former conscripts looked back on their time in National Service with a sense of pride and accomplishment.
All photographs by Ceridwen Hughes
Case Study:
Michael Wilkinson
“I look back on it as being a very positive experience.”
“I didn’t go in at 18; I was 19½. In a way, I looked forward to National Service but I didn’t go in straight away because I was in the civil service in the Forestry Commission and I had the opportunity to take exams. Therefore, I was quite different from everybody else who turned up.
I started on the 24 February 1953. I was given a train ticket and went from London to Padgate which is in Warrington and we were there for about a week. I’d never travelled north before because I was brought up on the south coast of Portsmouth and spent most of the war years between Bristol and Bath and I’d never been north of Bristol. I remember going through the countryside, particularly in Shropshire and thinking ‘this is absolutely wonderful.’ We got to RAF Padgate and, over several days, we were given uniforms and taught a bit of discipline and we were there for a week. We went from Padgate to Hednesford
in Staffordshire to do our basic training and were there for 8 weeks. They just shouted at us every day and the whole time we were absolutely whacked. This is where I have strong memories of people crying, not being able to cope with leaving home, so it was really, really tough. Anyway, I enjoyed it.
Then they asked what I wanted to do, and I said something to do with looking after motorcars or lorries’ maintenance, so they decided I should be a
radar mechanic. I was also what they called a POM, which is Potential Officer Material. I interviewed for that and they said I could go on the Officer course but I needed to sign on for four years, I wasn’t willing to do that. I went to a place called Yatesbury and I was trained there as a radar mechanic. I was then asked if I wanted to go abroad and I said I’d be quite happy to do that so they posted me to the Middle East to the canal zone, we were sent to RAF Amman in Jordan.
I hadn’t appreciated until I got there that we were in a state of semi-war and all the army stations and the RAF stations all had extensive arms. You stayed inside almost all the time and we were on guard 12 hours or 24 hours, trying to protect the outside of the stations. The Canal Zone was tough, quite a few people died and we were under quite a lot of stress.
Overall, I think National Service was a very positive experience. It wasn’t easy but I learnt a great deal.”
To read Michael’s full account of his experiences and to visit the whole exhibition Click here
National Service: Veteran’s Reflections - Honouring Our Veterans’ Stories
Same but Different is proud to announce the planned expansion of the National Service Remembered project with a new phase called National Service: Veteran’s Reflections . This exciting initiative aims to reach out to more of our cherished National Service Veterans across the UK, capturing their experiences, stories, and to document the lives of the last generation to be called into service.
We are dedicated to preserving the rich history and personal narratives of those who served. National Service: Veteran’s Reflections will provide a platform for veterans to share their invaluable experiences, ensuring their stories are remembered and honoured for generations to come.
We invite organisations, National Service veterans, and anyone interested in being part of this meaningful project to get involved. If you know someone who would like to share their experiences or contribute to this initiative, please reach out to Claire at claire@samebutdifferentcic.org.uk
Together, we can celebrate and preserve the legacy of our National Service Veterans.
WHEELCHAIR ESSENTIALS
Gear up for comfort, personality and style.
Navigating life with a wheelchair can be made easier with the right accessories. From enhancing comfort, tackling weather challenges, or just adding a touch of style, these essential add-ons are designed to improve daily living. Whether it’s a moulded cushion to prevent pressure sores, a sturdy umbrella to shield from the rain or sun, or a funky bag to keep your belongings organised, these accessories can not only boost functionality, but also bring a sense of ease and confidence to your everyday adventures. Below are some of our favourite accessories.
Comfort and Support
A comfortable wheelchair is essential for maintaining physical health by preventing pressure sores and injuries, promoting good posture, and reducing stress on the body. Additionally, it can help prevent complications like scoliosis and breathing difficulties, ensuring users can fully participate in various aspects of life, such as education, employment, and social activities. Local wheelchair services and/or occupational therapists and physiotherapists should help to ensure you have everything you need, and if you are adding extras please seek advice if possible.
Cushions & Backrests
Browse wheelchair cushions on www.sunrisemedical.co.uk
View a wheelchair pillow cushion on www.careco.co.uk
Photograph by Rollz International, Unsplash
Convenience and Storage
Lap trays, cup holders, and bags or pouches are vital for wheelchair users, enhancing convenience and independence. Lap trays provide a stable surface for activities like eating or using a laptop, making daily tasks easier. Cup holders keep drinks accessible and prevent spills, promoting comfort and hydration. Bags and pouches offer practical storage for personal items, allowing users to carry their essentials without extra help. These accessories collectively improve the functionality and user experience of a wheelchair, supporting a more active and independent lifestyle.
Bags & Pouches
View a deluxe coloured wheelchair bag on www.mobilitysmart.co.uk View a cup holder for wheelchairs on www.essentialaids.com View a curve wheelchair lap tray and bag on shop.disabilityhorizons.com
Safety
Browse lighting on www.amazon.co.uk View a Quokka cup holder on www.mobilityforyou.co.uk
Safety features like lap belts and lighting are essential for wheelchair users. Lap belts keep users securely seated, preventing falls and injuries, while also helping maintain good posture. Again, these should be provided by or agreed with your medical team where possible. However, something that is very rarely provided is lighting, but which enhances visibility in low-light conditions, allowing safe navigation and being seen by others, reducing the risk of accidents. There are a range of different lights for powered and nonpowered chairs. Some bicycle lighting can be suitable for wheelchairs and Amazon also has a great range that also includes spoke reflectors. Be seen!
Seatbelts
Browse wheelchair seat belts on www.orionsafetybelt.co.uk
Cup Holders Lap Trays
View a wheelchair
Deluxe Coloured Wheelchair Bag
Curve Wheelchair Lap Tray and Bag
Quokka Cup Holder
Electric Wheelchair Light
Weather Protection
No one enjoys getting wet and cold whilst going about their daily lives so staying dry and comfortable in your chair is an absolute must to ensure comfort and safety in various conditions. Accessories can shield users from rain, wind, and harsh sunlight, preventing discomfort and potential health issues. Overall, weather protection enables wheelchair users to maintain their mobility and independence regardless of the weather.
Covers/Coats
View a wheelchair coat on www.seenin.co.uk
Jenson took part in our ‘Rare Aware’ exhibition.
Photograph by Ceridwen Hughes
Additional Accessories
Personalising your wheelchair can enhance comfort, functionality, and self-expression. All of the options here give you the opportunity to share your self-expression, whatever style you chose. Additionally, aesthetic customizations such as colour choices, decals, and accessories can express your personality and style. Personalisation is your choice, have fun with it. These are a few ideas that we love.
Spoke Protectors
Browse spoke protectors on www.izzywheels.com Browse decals and stickers on www.beanandbloom.co.uk
on www.meushop.org View pushrim covers on www.iwheel.us
Tigger - Disney x Izzy Wheels
Flexzi iPad holder with iPad case –Black
Chronic Girly Sticker Bundle
Cold Water Therapy
Taking the Plunge into Better Health
Cold water therapy, also known as cold hydrotherapy, involves using cold water to boost and stimulate health, and is proven to have a number of benefits. Despite a recent surge in popularity this is far from being a new therapy, or just another crazy fad. The benefits of cold water dips can be traced back over 5000 years to Hippocrates in ancient Greece, and to ancient Rome when Claudius Galen, a prominent Roman physician, advocated for the use of cold water therapy to treat fevers and believed in its benefits for reducing inflammation and promoting overall health. Today there is a wealth of scientific research and evidence available to back up the benefits, and a huge range of readily available and easily accessed information
and suggestions online. Here we look at ten benefits it could hold for you.
Reduces Muscle Soreness
Cold water immersion helps alleviate muscle soreness by reducing inflammation and swelling. It can help reduce muscle soreness after intense exercise by constricting blood vessels, which reduces blood flow to the area and helps decrease swelling and inflammation.
Speeds Up Recovery
The process not only eases muscle soreness but also speeds up recovery by minimising muscle damage. Athletes often use cold water immersion
to speed up recovery after workouts. Additionally, cold water therapy helps cool down the body after intense physical activity, making it an effective method for post-workout recovery.
Improves Your Circulation
When you immerse yourself in cold water your blood vessels constrict, pushing blood towards your core and vital organs to maintain body temperature. Once you leave the cold water your blood vessels dilate, allowing oxygen and nutrientrich blood to flow back to your muscles and tissues. This enhanced circulation helps deliver essential nutrients and oxygen more efficiently, promoting overall cardiovascular health and aiding in quicker muscle recovery.
Enhances Mood and Energy Levels
Cold water therapy can significantly improve your mood by stimulating the production of endorphins and noradrenaline, which help alleviate pain and boost feelings of wellbeing. The sudden exposure to cold water triggers a stress response that can lead to increased alertness and a sense of euphoria. Additionally, regular cold-water immersion has been shown to reduce symptoms of anxiety and depression, making it a natural and effective way to enhance mental health.
Boosts Your Immune System
Cold water therapy can boost your immune system by stimulating the production of white blood cells and enhancing the activity of your lymphatic system. When you’re immersed in cold water, your body responds by increasing circulation and activating the immune response. This process helps to flush out toxins and improve the efficiency of your immune system, making you more resilient to illnesses. Regular coldwater immersion can lead to long-lasting positive changes in your immune function, contributing to overall better health and well-being.
Increases Metabolism
Cold exposure can activate brown fat, which burns calories to generate heat, potentially aiding in weight loss. When you immerse in cold water, your body works harder to maintain it’s core temperature, which boosts your metabolic rate and burns more calories. This process, known as thermogenesis, helps convert white fat, which stores energy, into brown fat, which burns energy to produce heat. Regular cold-water immersion can therefore enhance your body’s ability to burn fat, contributing to weight loss and improved overall metabolic health.
Photograph by Matt Hardy, Unsplash
Improves Sleep
Cold water therapy can help regulate your body temperature, which can lead to deeper and more restful sleep by promoting relaxation and shifting the body from a sympathetic to a parasympathetic state. This transition helps slow down the heart rate and induces a state of calm, which is conducive to restful sleep. Regular coldwater immersion can lead to deeper, more restorative sleep, leaving you feeling more refreshed and energised upon waking.
Boost Your Skin Health
Cold water therapy can benefit your skin by reducing inflammation, stimulating collagen production, regulating sebum production, enhancing skin elasticity and reducing the appearance of fine lines and wrinkles. Additionally, cold water helps regulate sebum production, which can lead to a clearer complexion and smaller pores. Regular cold-water immersion can result in healthier, more vibrant skin.
Improve Resilience
Cold water therapy can improve resilience by training your body to handle stress more effectively. When you immerse yourself in cold water, your body triggers a stress response, activating the “fight or flight” mechanism. Over time, regular exposure to cold water helps your body adapt to this stress, enhancing your ability to cope with other stresses in daily life. This process not only builds physical resilience but also strengthens mental and emotional fortitude, making you more resilient overall.
Strengthens Self Discipline
The mental battle it takes to get into cold water can’t be underestimated. To know that you are going to be cold and uncomfortable both physically and mentally, but to do it anyway is an achievement in itself. You are setting yourself a goal and are being disciplined enough to do it no matter how difficult or uncomfortable it is. Your body will be telling you to get out and warm up but controlling your actions and fighting against the instinct is strengthening your mental ability. This discipline translates into other areas of life, empowering you to tackle challenges with equal discipline and determination.
Photograph by Lucas Andrade, Pexels
Do your research & Seek Advice
It is important to talk with your GP or healthcare practitioner about any new exercise or therapy before you start to ensure it’s right for you, especially cold-water therapy.
If it is something you are considering trying, do build up gradually. Start with a cooler temperature than you’re used to, add more cold water slowly over a number of sessions. Keep your immersions short and have someone with you.
Wim Hof Method
Wim Hof, often referred to as The Iceman, is a Dutch extreme athlete known for his extraordinary ability to endure freezing temperatures. He is famous worldwide for advocating and practising cold water therapy. He has developed a unique approach to wellness called the Wim Hof Method, which integrates specific breathing techniques, gradual cold exposure, and mental focus. Cold water therapy is a key component of his method and his results reignited wider scientific interest, providing a wealth of new information about the benefits.
Hof has published books that are available in all good bookstores and online.
Photograph by Paulina Herpel, Unsplash
5 Questions
with Ben Clifford
Founder, Head Coach and Director of Surfability UK
Please share a little background about why you set up Surfability with us:
Surfability UK was created in July 2013 after I worked at an ‘Autism surf day’ being run by another surf school in Bantham, Devon. After that day I saw an unfairness in access for those who have assistive needs and disabilities, and from that moment I knew I could help.
Since then we’ve come a long way. Once a small surf school working out of a car, Surfability UK is now a world leading adaptive surf school. We operate out of two purpose-built buildings in Caswell Bay on the Gower; with accessible changing rooms, kit drying facilities and extensive kit storage for our ever growing range of accessible equipment.
These were kindly built for us by DIY SOS and Children In Need in 2020, with all materials being donated by members of the local community.
Our involvement with global adaptive surfing continues to grow from strength to strength, and I recently cowrote the International Surfing Association Adaptive Surf Instructor Qualification. This qualification is based on the operating procedures developed at Surfability UK and is setting a world standard for adaptive surf instructing.
What are your top five tips that you typically share with someone who is nervous about trying adaptive surfing for the first time, either for themselves or their loved one?
First and most important is the reassurance that surfing doesn’t have to mean standing on a board, it’s about riding a wave in whatever way you can.
Don’t let not being able to swim stop you, stay in the white water and the shallows - it’s equally as fun!
There’s no rush to jump in at ‘the deep end,’ we work at your pace. There’s no pressure to do something you’re not comfortable with, being brave enough to try is the best thing you can do.
Talk about why you are nervous! Everyone who joins us is nervous for different reasons, we will help talk through your worries so that you can surf as your best self!
Just enjoy it! Being in the sea is so much fun, no matter the reason you’re in! Let yourself be free.
What is the change you would most like to see, or hope for, within adaptive sports over the next 10 years?
The key focus for change in inclusive adaptive sports and outdoor pursuits needs to be on funding, raising awareness, real and meaningful inclusion and creating empathetic infrastructures.
Photograph courtesy of Surfability UK
We would really love for inclusion to become ‘the norm’ - it is a lot more straightforward than people make it out to be! Being able to accommodate everyone is also a lot more fun!
We would also love to see more of the UK’s beautiful blue and green spaces become accessible to all. What Surfability UK achievement are you most proud of?
It’s very difficult to choose just one achievement, over 10 years we have achieved so much. From creating the world’s first seated board in Europe, to having our centre built for us by DIY SOS & Children in Need. But our proudest achievements
will always be seeing our students become surfers, when they are able to have surfing as an integral part of their lifestyle.
What do you do for yourself?
When I am not helping other people to surf, I love to surf myself! There are lots of ‘secret spots’ around Gower where you can find beautiful waves with no one else around. I am also an amateur mycologist (Mycology refers to the study of fungi) and love to study the fungi on Gower. I don’t have a TV, but I love books. I especially like to read about history, philosophy and poetry.
Rare Navigator Help when you need it
Rare Navigator Help when you need it
At Same but Different, we strive to make a positive difference to the lives of those affected by rare diseases. Through our Rare Navigator service, we offer emotional and practical support and information to individuals, their families and all involved in their care, from the point of diagnosis and beyond.
At Same but Different, we strive to make a positive difference to the lives of those affected by rare diseases. Through our Rare Navigator service, we offer emotional and practical support and information to individuals, their families and all involved in their care, from the point of diagnosis and beyond.
Our individualised support and advocacy service aims to ensure that each family is able to access the level of support they require to meet their needs. Our team can help you to access beneficial services and equipment, and can provide helpful information, tools and resources that encourage understanding of rare diseases and how it may affect your family.
Our individualised support and advocacy service aims to ensure that each family is able to access the level of support they require to meet their needs. Our team can help you to access beneficial services and equipment, and can provide helpful information, tools and resources that encourage understanding of rare diseases and how it may affect your family.
We work closely with national and local health and social care providers to ensure that our families are informed and have access to optimum care, treatment and services that can assist daily life and increase opportunities for independence and social interaction.
Our support area of North Wales will be expanded for the time-being and if we can't help you, we will put you in touch with our colleagues in disease specific support organisations. Katy Parry has a personal and professional understanding of the complexities and difficulties that families face and can support you in navigating your way through your rare disease journey. Some of the ways she supports families include:
Our support area of North Wales will be expanded for the time-being and if we can’t help you, we will put you in touch with our colleagues in disease specific support organisations. Katy Parry has a personal and professional understanding of the complexities and difficulties that families face and can support you in navigating your way through your rare disease journey. Some of the ways she supports families include:
•Home visits (whenever necessary)
• Home visits (whenever necessary)
•Supporting families to understand the choices of care that may be available
• Supporting families to understand the choices of care that may be available
• Helping families to access their local healthcare services
•Helping families to access their local healthcare services
We work closely with national and local health and social care providers to ensure that our families are informed and have access to optimum care, treatment and services that can assist daily life and increase opportunities for independence and social interaction.
For more information, please contact us on enquiries@samebutdifferentcic.org.uk or call 01352 757007
For more information, please contact us on enquiries@samebutdifferentcic.org.uk or call 01352 757007
•Liaising with local health and social care teams, which may include your Occupational Therapist, Speech and Language Therapist or Social Worker
• Liaising with local health and social care teams, which may include your Occupational Therapist, Speech and Language Therapist or Social Worker
•Working with schools and teaching staff to provide information to support children in attending and achieving at school
• Working with schools and teaching staff to provide information to support children in attending and achieving at school
•Accompanying individuals and families to clinic appointments or meetings.
• Accompanying individuals and families to clinic appointments or meetings.
Same but Different cic, The Old Chapel, 91 Wrexham Street, Mold CH7 1HQ www.samebutdifferentcic.org.uk
Photograph by Ceridwen Hughes
Find out more
BRUGES BECKONS
www.bourgognedesflandres.be www.grandhotelcasselbergh.be www.historium.be www.hotelsablon.be www.hotelorangerie.be www.koen-marijke.be www.legendstours.be www.museabrugge.be www.ottowaffleatelier.be www.pieterpourbus.com www.visitbruges.be
COLD WATER THERAPY www.wimhofmethod.com
FINDING PURPOSE www.ageuk.org.uk www.eventbrite.co.uk www.gov.uk/local-library-services www.journals.sagepub.com www.meetup.com www.maggies.org www.storyhouse.com www.u3a.org.uk
IT IS OUR TIME TO SHINE www.curecmd.org
MEET THE PROFESSIONAL www.independentliving.org www.therowan.org
NATIONAL SERVICE REMEMBERED www.samebutdifferentcic.org.uk/ nationalservice
PASSION. PURPOSE. PRODUCTIVITY. www.cff.org www.cysticfibrosis.org.uk www.instagram.com/nicholaskellyrd www.nhs.uk www.nicholaskellyrd.com www.youtube.com/@NicholasKellyRD
SONGS CAN LIVE FOREVER www.benbuddyslack.co.uk www.swansongproject.co.uk
STYLE www.amazon.co.uk
THE SONGBIRD’S TALE www.facebook.com/1950smuseum www.nhs.uk www.stamma.org
THE THREE FS. FRIENDSHIP, FINANCIAL SUPPORT & FIGHTING TO BE HEARD www.coppafeel.org www.fightingtobeheardfoundation.co.uk www.macmillan.org.uk www.make2ndscount.co.uk
WE ARE ALL EQUAL www.coolart2021.co.uk www.phab.org.uk www.specialolympicsgb.org.uk www.youtube.com/channel/ UCj-Q4Ms_11iu0DWl_CJHa3g
Supported by:
WHAT WE’RE INTO
www.atlantic-books.co.uk www.channel4.com www.youtube.com www.bbc.co.uk/iplayer
WHEELCHAIR ESSENTIALS
www.amazon.co.uk www.abilitysuperstore.com www.beanandbloom.co.uk www.bundlebean.com www.careco.co.uk www.essentialaids.com www.iwheel.us www.izzywheels.com www.kinetic-balance.com www.mobilityforyou.co.uk www.mobilitysmart.co.uk www.orionsafetybelt.co.uk www.samebutdifferentcic.org.uk/ rare-project www.seenin.co.uk www.shop.disabilityhorizons.com www.sunrisemedical.co.uk www.merushop.org
5 QUESTIONS WITH BEN CLIFFORD www.surfabilityukcic.org
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