Dear Jo Public Is this the single largest inexcusable travesty of the 21st Century? What do you know, or choose to know?  Do you care? I live in a world where injustices are metered out as commonplace where inequalities are the accepted norm, where people like my daughter Jen are unknown and unseen, invisible in full sight.   In my world

It’s been a busy few months with my family and my dancing family. I am very proud of all we’ve done so far this year. It’s been very exciting. After my Mum and Dad sailed across the Atlantic on their yacht Sukama in January, my lead support and Fire Sister Donna and I flew to meet them in Tampa Bay,

I’m honoured to be recognised as a finalist for “20 years a Social Enterprise Champion” in Selnet Ltd awards, and to have been nominated for the SMK Lifetime Achievement award. I have always championed social change, challenging assumptions and adding my voice and support wherever I can – as a naturally shy introvert that’s been quite something! I believe when

After our whirlwind week in the UK visiting Malcolm’s Mum Jean and finding her in remarkably fine spirits, a couple of powerful DanceSyndrome sessions connecting with each other in person and other organisations in our dance world including our partners from Japan, and playing catch up on various fronts, we were happy to be heading back to Sukama.  UK, Antigua,

With an important caveat.  All views are personal and formed over 70 years of living, 44 with Jen, who today presents as her most fulfilled self ever. Let’s consider the work/life balance for all of us. What works best – for you, for people you know, for your family members, your loved ones, for people with learning disabilities?  And how

These past couple of weeks have been amazing, a microcosm of our world in theory and in practice.  We have embraced risk and opportunity, we have committed to each other and travelled the miles, inspired and impacted unsuspecting others, and opened doors to the future for DanceSyndrome with Jen seen, heard, valued and respected communicating through her language of dance.

The stifling heat in Antigua greeted my sister (Paul’s Mum), Merie two weeks ago. It has been pure joy to hear her excitement as she witnesses the next unexpected and revels in the numerous offbeat opportunities presenting. I am thrilled that we are able to make new memories with someone so dear to me, someone who I only came to know

Thank you for noticing and for your congratulations!  Can it really be 17 years since we took those first faltering steps towards the birth of DanceSyndrome? Like so many decisions it was driven by necessity.  Jen’s world was crumbling around her and the frustration of her aspirations not being recognized just because she has a learning disability was too much

I shall always remember the very first time we visited and fell in love with Guernsey.  Aft clambering over rocks we were resting and admiring the view from the alluring coast path, Jen gurgling happily in a kangaroo carrier as Malcolm and I chatted quietly smitten by the beauty of our surroundings and the profundity of the moment as we

Thank you to every person who has journeyed with us and alongside us.  We’ve really appreciated feeling the fellowship of all who have joined us these past few weeks.  But how to do justice to this experience of a lifetime? Superlatives hardly cut it – incredible, unbelievable, stupendous, bigger, biggest ever seen, awesome, whilst in and amongst we experience bikini

27 January 2026 at 14:42:06 GMT Day 18 cont…………… Minimal winds through the day of around 21 knots. Wall to wall sunshine causing us to hide whenever possible. 1600 ‘Let’s get the bimini up. That should be quick and easy’ Tried but abandoned. Sadly we have no photos but would have been good with me lying prone across the cockpit

25 January 2026 at 18:56:20 GMT Day 16  There seemed to be no reason on a mostly clear night, but strangely Orion lost his head and shoulders! 3.30am and 32 knots was the point where I was definitely uncomfortable with our sail set.  I unintentionally managed to awake the whole ships company but happily having watched the instruments for a while it

Team photo: Sue, Malcolm and Paul, as we set off from Tazacorte, La Palma 9th January 2026 23 January 2026 at 11:41:13 GMT Day 13 Consistent strong winds continued throughout the day. Bumpy seas forced us to carefully hold on down below and on deck to avoid being tossed about by the waves. Paul got properly wet on his morning

Day 11 I relieved Paul at 4am who reported starlit skies, still no moon (?), wind gusting 19 – 27 knots, and lots of shooting stars. My watch came with plentiful wind, even bigger seas, and a yacht which didn’t show up on the radar at all passing 0.7miles ahead of us. I’m thankful for alarms on the electronics! All

16 January 2026 at 10:15:19 GMT Day 7 continued The beautiful sunrise hailed a mixed bag of a day where cloud cover and strong winds prevailed. Lots of fun! I need to catch up on some shut eye, but for now, here’s a log entry to make you smile. Paul is obviously the master of the understatement. And really good

14 January 2026 at 06:36:53 GMT Day 5 We were all wrapped up against the chilly night air last night but it was delightfully quiet in spite of a bobbly sea. Paul stood a good 1 hour watch on deck alone making adjustments to George when necessary. The generator purred into action at 0630 followed by the most delicious breakfast

11 January 2026 at 10:23:45 GMT Day 1 cont Must be a sailing day – he’s got that silly grin back! Up before dawn attempting to catch up on last minute todo list – still not complete but made a good stab at it.  Still downloading CAF statement for DanceSyndrome as we pointed the bow offshore departing Tazacorte bound for the

They say its all in the preparation, so preparing we are for our second transatlantic odyssey!  The wind is howling, the waves are up, the beach is closed, but its warm enough for ice-cream sitting on the sea wall watching another beautiful sunset as the sun dips, children play in the square at Puerto Tazacorte, and the excellent musicians tune

We all have choices in life. But sometimes society, our community or situations are created unequal. Sometimes, people are excluded, or included, because of the colour of their skin, their gender, their finances, where they were born or their disability. How many of us would choose to be excluded from society? Would we choose to be denied access to opportunities,

I hope you had a lovely summer. I did. I’m loving my life, just being me. I’m having a blast! The July community showcase of my charity DanceSyndrome was just amazing.  All my dancers were together in one space.  Everyone shone in their own unique way and lit up the theatre but we came together in a new dance where

With synapses zapping, buzzing, and fizzing all week, perhaps I might be forgiven for indulging in a tingling sensation of pride.  It is incredibly special to be determined the most worthy recipient from amongst notable others of the Lifetime Achievement Award at Best Business Women Awards. Thank you again to you Debbie and your judges and sponsors for creating this

We’ve just returned back to the UK buoyed up by a fabulous experience at #EAMHID25 in Ghent where Jen and the DanceSyndrome dancers made a significant contribution. Not only did they have an opportunity to deliver a solicited symposium (presentation) in conjunction with the NHS and a workshop ‘Embracing Inclusivity’, but they were given license to share their passion and

Inclusion rocks! Inclusion is key to happiness. Most of us have experienced exclusion at some time in our lives. Just imagine if that was the norm, if you were routinely left out. How would you feel? What would you have to live for? Why get up in the morning? Now is the time to stop paying lip service to EDI.

How was it for you?  Your summer holiday that is. Hopefully you’re restored, refreshed, relaxed, reinvigorated.  It’s important isn’t it.  That break we all value so much, plan ahead of time, secure the dates in the work calendar, decide whether we prefer to go alone, with family or friends.  As autonomous adults we can choose where, when, the budget, and

I always wanted to be a dancer. I’ve always danced. It’s in my blood. Dance is how I communicate best. I’m Jen and I’m a dancer. I am co-founder and director of my charity DanceSyndrome. I’m also proud to be a NAPA Ambassador helping others to be active in whatever way is right for them. I trained as a community

If you don’t have a child with learning disabilities, please read on to understand more.  This is our reality. If like me you do have an offspring with learning disabilities you’ll experience life very differently to the rest of society.  Dear Parent, How are you doing today? If we haven’t met before I’m Jen’s mum, occasionally known as Sue.  Today

I’m always mindful when writing as a carer of 43 years that I’ve had it relatively easy.  Jen has been blessed with good health, so our challenges have mostly been intellectually, socially and emotionally focused. The lot of a carer is fraught with uncertainty and often significant financial sacrifice.  We find ourselves needing eyes in the back of our heads

30 years ago, May 1995, Jen aged 13 lay on a blanket under the pear tree in the garden whilst we planted an orchard.  She was incapable of doing anything else.  Jen had already been receiving medical intervention for 3 weeks. 1 day later she was in hospital and we were advised that she was terminally ill.  At best she

“Inclusive education is a national priority—and a shared responsibility.” says Tom Rees, Chair of the DfE’s Expert Advisory Group for Inclusion. We agree! We’ve submitted the following to the enquiry, and have offered our support to engage further happy to share all we’ve learnt from our personal experiences: Social change is imperative if we are to create a fairer, more

Spot the dancers a mile off! A meeting of hearts and minds through dance, sparkles, smiles, two honorary Doctors of Arts from the University of Salford in 2024 communicate through their shared passion. From the moment we arrived at the prestigious Cholmondley Room Jen was on the look out for Dr Ria Meera Munshi. Her excitement was palpable. Yet again

In all parts of our lives we find systems which are meant to be helpful. Support to navigate a certain aspect or point in time. Everyone accepts that ‘the system’ is broken.  But until we listen intelligently to individuals, people with learning disabilities will continue to remain invisible.  If we value everybody, truly believe in equity and equality of opportunity,

The theme Accelerate Action coming from International Women’s Day 2025 is a powerful one. But only if we then take action on what we believe needs to change. I’ve had a wonderful couple of weeks capturing some conversations with some amazing women with different life experiences, cultures and stories from my own. But our commonality of wanting the world to

The UK Government Education Committee inquiry “will focus on how to achieve both short term stability and long-term sustainability for the SEND system to improve experiences and outcomes for children and young people.” January 2025. We have submitted written evidence as parents of a 43 year old daughter with Down’s syndrome and feel that opening up the conversations, encouraging and