Jen & Giovanni for Stephs Packed Lunch 2022
For us it’s normal. It’s what we do, it’s who we are. For others who know what it’s like to live with a learning disability, or care for and support someone with a learning disability it, we’re told it’s an extraordinary ordinary life.
Jen was written off at birth by the medics. She wasn’t valued. From the off she was a ‘problem’, a basket of ‘needs’, a ‘cost’. Her identity was ‘learning disabled’. Negativity is draining and demanding for any of us but imagine the huge almost unimaginable, often unmanageable impact on the person concerned. So many have traditionally been denied a positive self-image because they have ‘additional needs’, as if that in itself isn’t enough to cope with.
But for us Jen was our daughter, our firstborn. Jen was both ‘wanted’ and ‘loved’. Jen is, and always has been a ‘dancer’. Now, having kept the faith and actively ‘listened’ to Jen for almost 40 years, Jen is thriving. She is living the most extraordinary ‘normal’ life. Only yesterday Jen told us: “I’m in demand! Guess what arrived on Saturday? Do you know the EVAs, the EVA Stars? The certificate arrived on Saturday. It’s on my mantelpiece!” The EVAs are open to anyone in the North West of England and Jen won the award on a level playing field.
From Jen: Living the most extraordinary, ‘normal’ life (scie.org.uk)
After 10 years of doors being closed in her face, driven by frustration and desperation, together we set up DanceSyndrome. Since then Jen has thrived. Jen is a co-founder and director of a multi-award winning charity. No longer is Jen knocking on doors asking to be let in, instead she’s taken control of her life; through DanceSyndrome she’s creating opportunities for countless others like her. The whole experience has been extraordinary but none more so than the past 12 months.
Sept 2022 DanceSyndrome awarded 3 years funding for developing community work by Reaching Communities, The National Lottery
Sept 2022 Jen and Sue won Charity Champion at Best BusinessWomen Awards
Nov 2022 DanceSyndrome recognized with 3 years funding for developing performance work by Arts Council England with National Portfolio Organisation (NPO) status
Feb 2023 DanceSyndrome celebrated 10 years a charity, Giovanni Pernice, (one of the dancers on Strictly Come Dancing) asked to be an ambassador!
June 2023 DanceSyndrome performed live on Steph’s Packed Lunch during Learning Disability Awareness Week
June 2023 Jen awarded British Empire Medal (BEM) for services to disabled people.
Aug 2023 DanceSyndrome performed at the Edinburgh Fringe for the 3rd year, a new production, SENse which will tour in 2024.
Sept 2023 Jen, DanceSyndrome and Sue headlined at Best Business Women Awards
As a parent, hearing that your daughter has been recognised in the King’s Honours List is a proud mum moment, but to have your daughter who happens to have Down’s syndrome awarded such an honour is mindblowing. This is an incredible accolade and is testimony to the huge effort and focus that Jen brings to all that she does for and with DanceSyndrome, her dancing family.
As Jen says ‘Dance is my life, DanceSyndrome is my everything’. My heart brims full of pride.
If you’d like us to inspire your organisation with the possibility of extraordinary ordinary lives we’re available for speaking, training and development opportunities. Get in touch.
Please do leave a comment with your own thoughts about what’s possible for leading extraordinary lives.
One Comment on “The last 12 months of an extraordinary ordinary life”
If all opened their minds to “anything is possible if you open your mind to it” the world would be a better place indeed.
All should explore the ” what if?”
This week I was lucky to see some 17 years long standing customers. I d not seen for a long time. They have a “what if and lets try and lets assume they can” attitude with their adopted children. Both daughters with 2 decades between them were written off at birth like your Jen, my friend.
Both of their daughters have and are achieving “extraordinary” levels of life due to their wonderful loving parents belief in lets try, what if, encourage see what happens and not accepting cant and no. Just the same as my new (now sadly deceased inlaws) did for their daughter.
I m lucky, surrounded by people who believe in “they can lets try see what happens” people and “cant” doesnt exist in there thoughts just the lets find their best they can be.
Keep inspiring others to think the same or to see what’s possible and have a go at this rightful and better life xx