Is a disabled person’s life really worth less than yours?

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Diego blinks several times and looks at me with his trademark grin. “S-s-s-sophie”, he stammers, his eyes alight with excitement, “Can we sing the Shrek song again?” Happily, I oblige, and we dance, and we play, and we laugh a lot. We do this every single day. Next, he’ll ask if we can sing YMCA, we’ll laugh some more, and then at some point I’ll persuade him to back away from the music blasting out of the computer and come for a walk in the countryside with me.

He’ll hold my hand as we amble through the woods. He’ll point out birds and many other wild sounds I hadn’t even noticed – being as I am too wrapped up in my everyday problems – and I’ll be glad he brought me back to the present moment, as always. Then Diego will usually tell me the same story over and over again, and even though it takes him a while to find the words, I’ll never get tired of hearing it because he does it with such enthusiasm – always smiling, always peppering the tale by telling me ‘I l-l-l-l-love you Sophie’, with his beaming grin, his pride and his genuine affection cheering my day up no end. I feel the urge to kiss Diego all over his cutesy, chubby little face every time I see him. He’s probably the most adorable child I have ever met in my life. 

Diego happens to have Down’s syndrome, which, far from being a burden to me as his (informal, family-friend) nanny, only seems to reinforce my belief that most disabilities could be more accurately termed ‘dif-abilities’. 

I have a daughter, Evie, who is three years younger than Diego. They went to primary school together, played out together daily, and slept in the same house at least twice a week. Evie was born with the usual number of chromosomes. Evie is wonderful, of course: she’s hilariously funny, she’s bright, she’s artistic; she amazed me and made me burst with pride by learning a foreign language fluently in three months. She’s also warm and caring and kind. She’s ‘good’ at things’ in a way Diego never could be. 

But Evie has her flaws. She doesn’t have the same passion for life as he does, she doesn’t have the same sunny temperament, beaming grin nor the same very special and loving personality as Diego. She’s argumentative, she’s stubborn, she’s sulky, she’s lazy, she gets bored easily, she refuses to walk the dog with me, and although she’s the biggest love of my life, she’s also much, much harder to parent than Diego is, in a hundred different ways. 

I looked after Diego daily between the ages of 10 and 15, while living in rural Spain. Diego is now a happy, healthy, bright 19 years old, and is something of a comedian. He still loves music and dance and stories and playing. His Mum and Dad, Mari and Manuel, have never treated him any differently from his sisters Laura and Lucia. As far as the family are concerned, there are no limits to what he can do. Diego even has his own YouTube channel, which makes me well up with pride every time I watch a new upload. He is loved –  and I mean really loved, cherished and respected – by the whole village, with its tiny population of 200.

In that small farming community, Diego isn’t the only person with Down’s Syndrome. There’s also Paquito, now 40 years old, who is the (self-appointed) tour guide of the village. He waits patiently for buses to pull into the bus stop at the top of the hill, instructs the bemused tourists to follow him, and then accompanies them back to the coach after his guided walk, standing with his wallet wide open and a big smile, waiting for tips. Needless to say, Paquito does very well out of this casual work. He’s something of a local celebrity – he’s appeared on the local news, he was instrumental in promoting a local saint to appeal to Catholic pilgrims from all over Spain, he’s printed his own T shirts and branded himself, and just before I came back to the UK, he even wrote a successful book. Paquito’s parents were told he would never amount to anything, and yet he’s proven that his entrepreneurial spirit rivals that of Alan Sugar or Richard Branson.

Call me ignorant, but until I stumbled across a segment from the Victoria Derbyshire show last week – clip below – I had absolutely no idea that UK law allows for termination up to the moment of birth in the case of ‘foetal abnormality’. The moment of birth? Surely there’s a name for that. Heidi Crowter, who has the same condition as Diego, agrees. She’s petitioning the government to change the law, which is now 50 years old and (at best) completely out-dated.

Victoria Derbyshire also asked Heidi what she would say to a couple who had received news their unborn child could have Down’s syndrome. Heidi responded: “I’d say, don’t be scared, and carry on with the pregnancy. And I would also give the advice to meet someone with Down’s syndrome, and really get to know them and really see that there is a person behind that chromosome.”

I know that on a personal level, my life without Diego in it would be far less enriched. I can say with certainty that I’d have learned less about love, about the simple things in life. I’d be more cynical. I’d have laughed fewer times, danced fewer times, and maybe I’d never have discovered how much I love being around and working with people who were born different, people who a significant section of society still cannot accept and understand – let alone see as equals. This needs to change.

Heidi is backed by actress Sally Phillips, whose son Olly also has Down’s Syndrome. Phillips has argued: “Given advances in medical care and quality of life for people with Down’s syndrome, the different right to life is beginning to look not just dated but barbaric.”

Paul Conrathe, the lawyer supporting the families, stated: “This case addresses a matter that is fundamentally discriminatory — that unborn babies with a disability, and in this case Down’s syndrome, should be aborted up to birth.”

In the past ten years, there has been a 42% rise in the number of abortions for Down’s Syndrome. Many of these ‘abortions’ are carried out at birth. Wait. Can you really ‘terminate’ a newborn baby? Is that a fair term to use, or is it just a vile euphemism? It’s a baby. A fully-formed human being. It’s not simply a bag of cells; that baby has sentience. It feels pain, disabled or not. The 24-week deadline on abortions surely should apply to all babies, no matter how many chromosomes they have.

To be absolutely clear, I can’t (and I won’t!) judge or blame the parents for this statistic. I’m sure they went through hell, I’m sure it was the most difficult decision they ever had to make, and I genuinely believe it’s not their fault that medical practicioners (specifically) and society (in general) has filled them with so much fear that the idea of keeping a baby born with Down’s Syndrome seems an impossible choice. Many parents of children with the condition have reported that they were encouraged – even pressured – to terminate the pregnancy. This seems insane in today’s world. I like to think that Heidi’s suggestion that getting to know a person with a dif-ability would lead to a sea-change in attitudes is probably correct.

I write this blog from the point of view that all lives are valuable, that all humans have the potential to achieve above and beyond what is expected of them, that leading a fulfilled life is not something that is reserved for those of us who society deems normal and acceptable. Disability does not need to define a person. Having a child with complex needs is undoubtedly a great struggle, but over time I have come to believe that it is nurture, rather than nature, that affects whether or not a ‘difabled’ child will thrive or not – especially when discussing Down’s Syndrome in particular.

I once worked in Eureka children’s museum cafe while at university, and a colleague of mine was born with the condition. Sarah was highly efficent and hard working. She took great pride in her cleaning duties, she always had a smile for the customers, she adored being able to help them, and even when they complained she would find a solution that most of us hadn’t been able to see. This is why I hate the word disability. It’s offensive and it’s inaccurate. Sarah has abilities I don’t have, as does Diego, and Paquito, and arguably everyone I work with now who was born with some kind of ‘defect’ or ‘abnormality’. My music sessions have proven that many difabled people have better rhythm than I do – and I’ve been playing drums for 4 years!

So how about instead of allowing (or even encouraging) parents-to-be believe that their lives will be entirely ruined if they go ahead with the birth of a disabled child, we give them all the resources and support possible to make them feel strong enough to cope with the undoubtedly challenging – but very rewarding – journey ahead? 

What do you think? Please share this post and your comments below!

Nature & wellbeing go hand in hand

Winter is fading, green shoots are pushing up through the earth, and we can already enjoy the beautiful sight of snowdrops and crocuses bursting with colour. Yay! Spring is almost upon us, which seems like the perfect time to write a blog post about the therapeutic value of such things as gardening, rambling across the moors, walking through a forest, or otherwise appreciating the natural world, with its wonderful sounds of babbling brooks, birdsong and breeze rustling through the trees.

New research out this month has offered further evidence that human interaction with nature is a vital ingredient for health and wellbeing. Surprised? Me neither. But wait! Not only that, this fascinating study found that having an emotional connection with nature is four times more likely to make us feel that our lives are worthwhile and have meaning than having a high social status or income level.

The paper, co-ordinated by Natural England and based on five long years of research, concluded that many things we assume are vital for our happiness levels – such as getting a great education, having a professional occupation, earning a good income, and generally feeling respected by society – actually pale in comparison to the sense of deep satisfaction and wellbeing we gain when we choose to make nature a big part of our lives. I do hope I’m not simplifying the research too much here, but to summarise the most mind-boggling findings, this would be the key take-home point: A disconnection to the natural world (let’s call it ‘nature poverty’) could actually cause more harm to your health, happiness and wellbeing than socio-economic (financial) poverty. Wow. Just wow…I feel like something I’ve innately known since childhood has finally been confirmed!

Almost five thousand adults took part in the scientific study, which aimed to draw conclusions between health and wellbeing and our relationship to nature (not only in terms of how much we are immersed in it and whether we live in a green area, but also whether we have an emotional connection to the natural world), and whether this influences behaviours: such as showing an interest in conservation, undertaking voluntary work related to the environment we live in, and/or buying eco-friendly products. Interestingly, researchers found that living in an area with green spaces will not affect your health in a beneficial way in the slightest, unless those green spaces are being used (looking out of the window and admiring the view just doesn’t cut the mustard…in fact, the study found it may even adversely affect your health).

Getting out and enjoying the countryside at least once a week, however, was credited with much higher levels of what scientists call eudaimonic wellbeing. Even watching nature documentaries on TV was credited with inspiring viewers to feel a little more emotionally connected to nature, as well as sparking environmentally-friendly behaviours. Why is that so important? Because feeling a connection to nature could be the one thing that saves it from human destruction, according to other significant research.

Bearing in mind that people living with dif-abilities (wheelchair users in particular) often find it extremely difficult to access Britain’s countryside and immerse themselves in nature at will, what could the findings of this study could mean in the context of disability rights and accessibility to our countryside?

What do you think? Please do share this blog post and comment below! 

Note: Thank you to the wonderful work of Prof. Miles Richardson (one of the researchers who led the study) and his blog summarising these findings, which I’m so happy I stumbled upon. It’s worth pointing out that research into nature connectedness has been named by Universities UK as one of the UK’s 100 best breakthroughs for its impact, so if the therapeutic values of nature interest you as much as they do me, I’d recommend you follow Prof. Richardson’s blog

 

 

 

Introducing Creative Rhythms

Creative Rhythms: Tailor-made, person-centred art, music, nature and sensory sessions to develop, excite and inspire

Wouldn’t it be nice to live a world where people recognise that what unites us is far more important than any ‘dif-ability’* that divides us? Music, nature and the creative arts speak to something deep inside each and every one of us, and promote a great and long-lasting sense of wellbeing and inner peace.

Creative Rhythms offers person-centred, tailor-made art and music sessions along with sensory and intensive interaction time and seasonal outdoor activities to focus on what we all have in common: a love of and deep connection to music, art, nature and the senses. Aside from being tons of fun, sessions can help to develop the following:

  • Sensory skills
  • Spiritual and emotional wellbeing
  • Imagination
  • Reclamation of personal power
  • Potential for holistic development
  • Meaningful opportunities for learning
  • Hand-to-eye co-ordination
  • Individuality
  • Sense of self
  • Learning rhythm and tempo
  • Motor skills
  • Choice-making
  • Communication skills
  • Interaction with others
  • Observation and listening skills
  • Creativity
  • Teamwork
  • Self esteem
  • Sessions are also therapeutic, calming, and inspire happiness

The Creative Rhythms Philosophy is that all people with a ‘dif-ability’ can express themselves and come alive through music, creativity, the senses, alternative communication techniques, and time spent in nature. 

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FAQ

Who are the sessions designed for?

Creative Rhythms uses the arts to engage with hard-to-reach individuals, whatever their situation. The sessions work well for children and adults with mild learning disabilities and have also proven very beneficial to those with profound and multiple learning disabilities. These sessions can benefit sufferers of dementia, particularly through music that sparks nostalgia, and they can also act as a positive outlet for individuals with mental health problems or those expressing ‘challenging’ behaviour.

Why choose Creative Rhythms?

The key difference with Creative Rhythms is that sessions can take place in the comfort of your own home. As well as a relaxed environment, this means activities are person-centred and tailor-made rather than having a ‘one size fits all’ approach. In terms of music, Creative Rhythms offers a wide range of resources including a loop machine, karaoke, amplifiers, microphones and a wide variety of musical instruments and percussion, all available at a cost that is designed to be inclusive and affordable.

Are the sessions safe and professional?

Yes. The sessions are fully insured and conducted by Sophie, who has a current enhanced DBS certificate, is an emergency first aider, and also trained to administer Midazolam rescue medication.

How long do sessions last?

Sessions run for either one or two hours, depending on the needs and wishes of the individual or group. Art, music, and nature sessions (summer only) can be combined as required.

What do they involve?

Creative Rhythms focuses on art and music, with other nature-based sessions taking place in the spring and summer months. Sessions are person-centred and therefore are all different, designed to suit each person/group’s needs and wishes and bearing in mind any issues of capacity and ability.

Where do the sessions take place?

Creative Rhythms is primarily a mobile service and comes to the individual’s home (or organisation) for sessions. It is based in Luddenden, Calderdale, West Yorkshire, and covers the whole Halifax area, Todmorden, and most of Kirklees and Bradford.

When do the sessions run?

The sessions can be arranged at a time and day to suit the individual or group, and run all year round.

How much do the sessions cost?

The session prices below reflect fuel and travelling time, as well as the cost of all materials and resources. Prices shown are for one hour. Second hours are all charged at 50% of the usual price.

Groups of 4 or more: £7 each, with discounts for taster sessions available.

Groups of 2-3: £12 each, with discounts for taster sessions available.

Individual: £25, with free taster session and further discounts for block bookings.

Large groups, day centres, schools and organisations: to be negotiated at the point of enquiry depending on requirements and group size. Taster sessions are always free!

Click on the tabs at the top of the home page to find out more about how art and music can make such a difference to someone who is differently (*dif)abled. Keep scrolling for testimonials and gallery!

Email: creativerhythmsophie@gmail.com
Phone: 07482 316571

Testimonials:

“Sophie has been working with my daughter who has profound mental and physical disabilities. She has introduced art and  music into Amanda’s life and made a real difference. Having one to one sessions with someone who really cares and has patience    and vision has given Amanda some way to focus her attention to colour and texture and helps to improve her concentration. Music has always brought pleasure to Amanda, but this has really been enhanced by Sophie playing an instrument in her presence and encouraging hands on involvement. These therapies have given Amanda something special to enjoy.” – Cathy & Bill, parents

“Sophie is very creative and she also has the rare ability to tune into peoples’ sensory and communication needs in the most fantastic, person-centred way.” – Sarah Walton, Supported living manager, Creative Support Calderdale

“Sophie has spent time with my non-verbal child on many occasions , both in our home and in an outdoor setting to offer sensory time and encourage my son to interact. The sessions have been well thought out and appealing and he has really enjoyed the time spent with Sophie. The benefits have been more engagement, more smiles, and it has also encouraged his love of music and nature. Robin looks forward to seeing Sophie and experiencing new things.” – Emma, Parent 

Gallery

When working with vulnerable people, the use of photography and video recording is rare, for obvious reasons. As such this gallery is limited – in fact, the only real way of finding out what happens in a Creative Rhythms workshop is to try one and see for yourself ! So please get in touch and ask about discounts for taster sessions.

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Martin loves strumming the guitar and playing with the bells, but sound baths are his favourite!
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Martin loving the butterfly cocoons
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Amanda loved making this beautiful lion made with Autumn leaves
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Painting a butterfly with Amanda
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Jack exploring some of the sights, sounds and smells of the theme at the start of a ’round the world’ sensory music session
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Some percussion instruments (and a monkey who likes to say hello)!
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Here’s me recording a song I wrote for Jack

Inspirational quotes I’d like to share!

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