Sue Blackwell shares the story of her daughter Jen's journey as she sought to follow her dreams and live a life of her own choosing.
Author: Sue Blackwell
So here's a strange dichotomy: After a text-book pregnancy my daughter Jen was born in 1981. Ten days later she was confirmed as having trisomic Down's syndrome. Here are some snippets from her life:
At 6 months old the consultant gynaecologist said: “The last one was a disaster. Put her in a home and have another child.”
At 9 months old the consultant paediatrician said: “You shouldn't do that, it's bad for Jen and bad for you as a family.”
Aged 7 her Head Teacher said: “Don't expect anything much of her.”
At 13 Jen contracted pneumonia and was given just 3 weeks to live.
At 18 the specialist careers adviser: “There's a drama group close by.” Jen's response, “I want dance, not drama.”
For the next 10 years together we searched for appropriate training for Jen so that she could become a community dance worker, her career of choice: “I want dance not babies!”
Such negativity and futility is then coupled with and compounded by the negative realities of reduced stamina, learning difficulties and reduced immune responses. Is it any wonder that parents lose hope and give up? They lose any resilience they may have had to insist upon equal human rights for their learning disabled offspring.
At 33 years old, Jen has been recognised as the Inspirational Woman of the Year at the Enterprise Vision Awards 2015 for her dance charity, DanceSyndrome. These business awards are open to all female entrepreneurs working in the North West.
I have had the privilege to attend 3 conferences recently. And it is a privilege. I found out about them, I chose to go, I had enough money to pay, I didn't need help to get there or attend, I could go to the workshops of my choice, my speech is relatively easy to understand, I could follow the dialogue and I made useful connections for the future. So they are by design accessible to me. But not necessarily to all. This is true of so much in life.
The world can be a very confusing place if you have a learning disability. It can be difficult for any of us to hear, understand, appreciate, remember the numerous things that bombard us all day long, but all the more so if you have a learning disability, need time to process information and are not able to be naturally assertive. Things that are perfectly doable take longer and demand more effort, things like getting up in the morning and ready for the day can be a huge challenge, but are a significant coup when accomplished well.
Learning disability affects every aspect of your life. No wonder people have panic attacks, tune out of conversations, don't recognise the importance of instructions, are susceptible to abuse by people assuring them of support, or display their frustrations and anger physically or verbally. No wonder they find themselves in compromising social situations when to be in a social situation at all is unusual, and no one has found the time to help them develop their social skills, or to get to know them as individuals, as people in their own right with their own interests, needs and vulnerabilities, none of which detract from them but rather make them the unique individuals that they are. Many such individuals have hidden talents which we fail to recognise because we're all too busy, or it’s too expensive, or too inconvenient.
Invariably those individuals with learning disabilities that we do hear of and from have some staunch allies, advocates or family behind them making sure they are not forgotten and neglected. But what of the many thousands who have no voice. Society has chosen to forget them. It's just simpler that way. Out of sight and out of mind. They used to attend day centres. Now these are closing down they spend time indoors, presumably watching yet more TV, becoming ever more socially isolated and depressed, eating yet more junk food, getting more overweight with obesity, diabetes, heart problems being the common results costing the NHS yet more money. This problem is set to continue as funds are cut further preventing people from living decent lives. This is a travesty of our time that can and must be redressed.
So what have we learnt? Some people with a learning disability are becoming angry. They have been frustrated for many years but are still marginalised. They feel like second class citizens for whom the rules are different, apparently it’s ok for almost all to have less help than they need, and for some 700,000 to have no help at all, to live lives without meaning, without social connections, no one supporting them to follow their interests, not living where they choose or with people they like. People with learning disabilities are first and foremost people. They have the same needs as everyone else including social, emotional and educational. Nobody chooses to be born with a disability but we, society, have a duty to support everyone, particularly those with a learning disability often described as the most disadvantaged group in society.
What are the realities of our time? The welfare budget is overspent by billions so cuts are being imposed on vulnerable people making them ever more vulnerable and ultimately costing social services, the NHS and society more money. Budgets are expected to come under more strain until at least 2020 so we are presented with a diminishing pot of money split between more people working less and less efficiently for any one individual. More people in crisis more of the time. How can we achieve the seemingly impossible, improve lives and cut budgets? We have to think differently. We have to try new ways of working, be open to new opportunities, become better citizens making real connections with all in our communities regardless of who they are, their religion, ethnicity, disability, age, gender, etc, especially those who are vulnerable. We need to enable, allow and embrace people with learning disabilities to be first class citizens living in the real world afforded appropriate support with equal opportunities living lives of their choosing, an ordinary life.
There is another way. Jen and others are proving it. They are demonstrating that social innovation and community asset building can be highly effective. These individuals are fortunate to live in a positive world following their dreams. They include:
Nobody can ever take away their learning disability but they have been given sufficient support for their lives to be worth living. There is something worth getting up for in the morning, something to look forward to. So there is a purpose to making an effort with personal care, to presenting in a socially acceptable way, to eating a healthy diet and developing acceptable social skills.
Jen is a dancer. With support, she founded DanceSyndrome in 2009. She is the Founder Director, a heady reality when negativity had been the norm for the previous 28 years of her life.
We had got so used to rejection, to not being wanted or valued by organisations, colleges, dance schools, being regarded as 'difficult' and I suppose we were, as we were demanding that Jen's human rights be met. We made it our business to be well informed, we networked and met influential others, and eventually Jen has the opportunity and is demonstrating her absolute delight in living life in a positive way, a life of her choosing. She influences others, inspires through her dance, works inclusively embracing all, contributes to society as a Dance Leader leading workshops in community settings supported by a professionally trained Dance Artist.
Jen and others devise captivating performance pieces for platforms ranging from business to university and conferences. Seminars for students led by people with learning disabilities is a true eye opener for students and will never be forgotten. Jen thrives on respect, she has developed self respect and a real belief in herself. She speaks of dance giving her 'a voice to be heard' (dance is her language) and how fulfilled she is to be sharing her passion and living her life in dance:
“Before DanceSyndrome my life in dance wasn't happening, and now it is… I couldn't have done it without support’."
DanceSyndrome is Jen's life. Now, 6 years later, there are 10 dancers (half have learning disabilities), 3 part time workers, 10 volunteers. DanceSyndrome became a charity in 2013 and in the same year gave a live performance on the BBC’s One Show, with Miranda and Pasha from Strictly in support of Comic Relief. There have been further TV appearances, associations with several universities and weekly workshops in Hindley, Chorley, Preston and Accrington. We are now in the 2nd year of a training course in Preston for new Dance Leaders with learning disabilities and Dance Artists/Support Dancers who are equally passionate about working in this field - all directed and delivered by a dancer with learning disabilities. And we're always delighted to discuss and develop bespoke work as required.
Jen Blackwell with DanceSyndrome members and supporters (photo credit: Natalie Kennedy)
DanceSyndrome has historically had one founding donor, direct work on the ground is usually underwritten by grants, and the core costs are currently met by Henry Smith and Tudor Trust, both national grant giving bodies. We need to develop a robust sustainable model as we come of age and are totally committed to making this happen. In particular we need to develop a culture of support and giving from individuals and businesses, fundraising, internships, and wish to find more income generating opportunities for the exciting, innovative, inspirational and inclusive performance company.
For Jen possibly the most thrilling outcome is friendship. Before DanceSyndrome friends did not exist in Jen's world. Until she was 28 she had yet to experience the life affirming enormity of true friends who like you for who you are, embraces that cause a shiver to run down your back, or someone to talk to when feeling low, or just someone to talk to! Now she has a phone full of them, mostly through dance, but others through her living arrangements where she chooses to live away from us, her parents, in a house of her choosing supported by people she chooses using her direct payment from Lancashire. The direct payment scheme has been crucial to Jen enabling her to meet her needs, obviously care, but also critically, the dance and music which underpin her life.
You can find out more about DanceSyndrome here.
The publisher is the Centre for Welfare Reform.
Born to Dance © Sue Blackwell 2016.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.
community, intellectual disabilities, Article
