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 do we find out?

In my humble opinion we fail people with learning disabilities every day.  Being in a rut doesn’t help anyone doing the same things every day of every week, which might be convenient for support workers but does it allow for personal growth?  It feels like we deny opportunities to make changes to trial new activities.

A perennial refrain from people with learning disabilities is ‘I want new friends’.

Being physically present in a community does not necessarily mean people with a learning disability feel integrated within the community or accepted by their peers. Social inclusion involves making meaningful connections and participation in fulfilling activities. Mencap 2019

We often hear about people with learning disabilities being hidden in plain sight. Just because someone is physically present doesn’t equate to them being happy, fulfilled or feel a sense of belonging.

For most of us our lives are divided in differing proportions into work (or equivalent), downtime (personal space), social (time with others).  But the ratios are different for all of us, and at different times in our lives.

Malcolm and I have only ever had 2 settings.  Stop and Go.  For the most part it’s Go – even in ‘retirement’ we run at a rate of knots, but every once in a while its ‘Stop’ and we catch our breath making space and time for each other, and without fail always on a Friday night!

We all have different needs

Jen doing Krav for her blue belt March 2026

Jen on the other hand has very different needs.  She loves being recognised, respected and in demand as the inspirational dancer and charity founder that she is, but with significantly less stamina she needs huge amounts more of downtime – chillaxing – when she can regroup and recharge her batteries by doing activities which aren’t demanding of her but nonetheless give her satisfaction such as diamond art or colouring or watching WWE, all of which she loves. 

Equally she loves socialising and connecting with others but ideally with just 1 or 2 special friends at a time, and only for a short period of time rarely amounting to more than 3 or 4 hours a week.  Socialising and hobbies also include engaging in flute playing with her flute monkey mate, Krav with her Marshall arts family and skiing with us, her nucleus family. 

Her biggest satisfaction and fulfilment is achieved through ‘working’ whether leading workshops, participating in the DanceSyndrome company class on a Wednesday with her dancing family, or performing mesmerising dance and speaking to an unsuspecting audience who find themselves bowled over when she shares her inner self through her chosen means of communication.

We all need to trial options in order to be better informed and to come to decisions as to how to spend our time.  Developing our sense of self goes hand in hand with our identity.  To be fulfilled we all need to carve out time, whether work, downtime or socialising, to be filled with sufficient activities to nourish our inner selves.  

People with learning disabilities are no different.  But invariably only dedicated skilled support will enable them to discover themselves, to open doors and trial options sufficient times to be able to make an informed decision.  In our experience, when you focus on their interests and talents and giving them opportunities to be heard in that arena, then will the magic happen.  Shared interests for Jen has meant dance in every area of her life.  Dance has led to meaningful lifelong friendships where before there were none.  

Together we can make a difference.

Jen and her best friend Becky, met through dance and have common interests talk about their friendship:

___________

Jen and Donna co-lead an online dance session for DanceSyndrome with the Down’s Syndrome Association. The DSEngage Wake Up and Dance with DanceSyndrome is a free online session that features an hour of fun dance moves and great pop music!