The invisible disability

Can you imagine a 3-4 year old boy lying on the pavement and kicking his legs in the air because he doesn’t want to cross at the traffic lights? What would you think? What might you say or even do? Well, stop and reflect for a moment, because probably what you are seeing as a tantrum or an unruly child has more to do with a disability.
There are millions of people in the world who live with invisible disabilities. We tend to associate disability with something that requires a wheelchair or crutches but many disabilities are not so easily recognisable.
In our Communication Project we talk about some of the less visible disabilities such as autism, hearing problems, mental disorders, multiple sclerosis or also called a thousand faces disease because it can affect people very differently. Not being able to identify them in an obvious way can make us fall into greater social and employment discrimination.
We have received thousands of responses to our latest project on Caring at Home for those with extra needs. We are happy, overwhelmed and very grateful for your help in the dissemination of this topic. But we would like to go further, and encourage people to take their time reading it and to empathize with the true life stories that it contains … In other words, for people to be aware of how important these people are to society and how sometimes we can make judgments through a lack of understanding.
I received this photo through our Instagram profile. A person with one of those invisible disabilities posted it in an act of protest. How many times do we complain because someone ignores us when we request something … can you imagine what it must be like to feel that society as a whole isn’t responding to you, but instead judging you?
This project will hopefully serve as an eye opener and help us to be more understanding by drawing attention to the fact that disability is not a problem but a different way of being and living in this world, which demands acceptance, respect, and caring attitude. At HRF we acknowledge that this must all begin and be cultivated in the home.

Taking the hard road

‘It’s part of life to have obstacles. It’s about overcoming obstacles; that’s the key to happiness.’ (US jazz pianist Herbie Hancock)

Life is a great gift, it’s true. But that does not mean it’s devoid of difficulties and obstacles which can complicate our day.  What’s more, I would say that life is wonderful, thanks to those obstacles and difficulties and barriers that can block our way.

Those challenges we face are what make us grow and improve ourselves and help us know ourselves better. It is through adversity that a person’s true potential is discovered and what we are capable of achieving.

None of this is new, but sometimes we forget. In fact, today’s society tries to avoid any kind of pain or suffering by preventing young people from understanding that this is also part of life. Children can be so overprotected that they are deprived of the tools with which to overcome small obstacles when they are young, leaving them helpless and vulnerable when faced with difficult problems when they are older.

And thanks to each and every one of the testimonies that make up our last Communication Project ‘Caring at Home for those with extra needs’ we have been able to discover how people with disabilities wake up every day aware of their weakness – but that knowledge, that awareness of what one is and what one has, makes them strong, turning their disability into an opportunity.

Learning about the day-to-day lives of people such as Horacio, Adriana, Kara, Sader, Miguel Ángel, Monica and Annick has been an inspiration to us all. I truly believe that the siblings of these children and their families grow stronger and are better prepared for life because they witness in their homes their joy, courage and determination to overcome any obstacles that stand in their way.

The different challenges we all face make our lives very worthwhile. And as Dr. Max says in the Netflix series ‘New Amsterdam’, “Sometimes it is convenient to take the harder road, because it will allow you to have better views.”

Caring at Home for those with extra needs

A few months ago we received a request: Why not show the world that homes, where people live with disabilities, are happy homes? Why not make visible the difficulties that these families live through and the courage with which they face them? Why not praise this example at a time when society becomes blocked and frustrated at the slightest obstacle?

And we said: “Yes.”

At Home Renaissance Foundation we have talked many times about the importance of home care. But we present a new perspective – that if in itself care is vital in the development of the person, then it is even more so with those facing difficulties.

We present you with our latest Communication Project: Caring at Home for those with extra needs

We are proud of what we have achieved. It has not been easy because these people are so humble that the last thing they want is to be the protagonists of anything. But they deserve it. Them, their families, their environments. For their attitude, for their courage, for their way of looking at life, for their determination, their effort and their example. Because there is nothing impossible for them and they are a constant lesson in self-improvement.

Thanks for agreeing to participate in this project. Society needs you more than ever.
We would be very grateful if you would share this document. Let others enjoy reading it too.

A deeper understanding of disability is rooted in the home

By Rosemary Roscoe

Happy New Year everyone and a warm welcome to the hundreds of new followers who joined this blog in 2020.

The founder of analytical psychology Carl Jung once stated that “The privilege of a lifetime is to become who you truly are”. The home, as we have experienced from months of lockdown due to Covid, is pivotal in our understanding of ourselves and others. All the prejudices of our understanding, especially when it comes to disabilities, are gleaned from the home. And those prejudices are reinforced, for example, by television dramas such as ITV’s Emmerdale Farm, which recently featured a couple expecting a baby with Down’s syndrome, portraying the baby as a lesser human being in some way. But parents, relatives, friends and those who work with people with Down’s syndrome follow a very different storyline.

They know that a child with Down’s has as much to give and gain from the world as any other child, if not more, and nurtured with love and understanding will grow into a well-adjusted, fulfilled adult. I speak from personal experience, as just over a year ago our youngest grandchild was diagnosed at birth as having Down’s Syndrome. She is an absolute delight, full of smiles and mischief, babbling away and gazing into your eyes. Despite the weak muscle tone she was born with, it hasn’t held her development back, as she is constantly crawling and walking around the furniture and pulling books off the bookcase to open the pages and look at the pictures.

She enjoys the attention of her young cousins and loves tipping up her toy boxes and discovering her favourite noisy toys, then confidently climbing onto your lap with a beaming smile, urging you to play with her. Next minute she’s slipping down from your lap and grasping your hands, walking determinedly around the room, then flopping down when we reach her intended destination. So determined is she to explore that recently her mum had to catch her by the feet to stop her diving headfirst down the stairs, so eager was she to go outside! She is such a joy and you can tell from the adoring looks from Mum and Dad that they wouldn’t have wanted her to be any different to her charming and loveable self.

We need to reassess our inbuilt biases against disabilities, and there is no better place to start than in the home. Many are suffering from post-covid stresses of one kind of another, caused either by contracting the virus or by the unprecedented upheavals in our home lives and work routines, all of which were beyond our control. Hopefully, these experiences have changed our perceptions of others who might seem different to us and lifted the cloud of ill-informed prejudices. If you have experiences and insights into caring for people with disabilities in the home, of any age, we would love you to share them with us.

Please send it to info@homerenaissancefoundation.org We will contact you to discuss any material you send us that is chosen for publication on our website.

Beyond Words

“Home comes in many different shapes and sizes but whoever we are and wherever we live, we need our home to be the place where we feel safest. That’s not always possible for reasons of finance or family turmoil or because a disabled person is deemed too needy to be supported at home. My life’s work has revolved around trying to implement the principles of the Ordinary Life movement for people with learning disabilities,  that each person is entitled to an ordinary Life in an ordinary house in an ordinary street with the support that they may need to be able to live safely and fully. Such support must include homemaking- a skill rarely found amongst the repertoire of direct support staff/ carers who are working in the community.”

These are the words of Professor Sheila the Baroness Hollins, independent crossbench life peer in the House of Lords, and Emeritus Professor of Psychiatry of Disability at St George’s University of London, and patron of Home Renaissance Foundation.

Beyond Words is the name of the charity founded by Sheila, Baroness Hollins in 1989, which produces picture books to help people with communication difficulties live safely and fully. It came out of her personal experience with her son Nigel who has learning a disability. In a recent article with The Guardian’s Saba Salman, Baroness Hollins explained that it was through pictures that she could help her young son understand and be prepared for the world outside his home, “When we put things into pictures, he felt more in control.”

Since 1989, Beyond Words has developed 59 titles covering a wide-range of topics from Falling in Love and Cooking with Friends to Getting on with Cancer and other health issues. At the time of writing, the charity is working rapidly to bring
out a book to address the recent health crisis: Beating the Virus. The pictures articulate, as no words can, some of the anxieties and joys of living in community, and offer explanation, familiarity and comfort. Over 100,000 copies have been distributed or sold and each title involves 100 learning disabled people as advisers or authors. There are 60 associated book clubs with 350-400 members. Nigel Hollins, now 47, is just such an advisor and runs one of the book clubs in Surrey. As his mother says “People see Nigel in the shops, cafe or train station. He has a life in the community.”

The books in themselves are a valuable resource to a person with communication difficulties, but their contribution is overwhelmingly enhanced by the presence of the care-giver who sits alongside exploring and listening page by page. Each book mirrors the loving patience and determination to nurture and prepare a child for a full and meaningful life.

The role of the home in this preparation, passing on practical skills and values with love and care, is both foundational and fundamental.  These two words, although on the surface synonymous, help to tell the wider story of all the home offers to the individual and to the society in which that individual will take his or her place. Foundational, in that what is learnt – for good or ill – in our early experiences of home will underpin our experience for a lifetime. Fundamental, in that the intrinsic qualities of home as a place of nurture, and the sharing of skills and values, shape  communities where we can all continue to feel our lives have dignity and meaning.

At the end of her interview with Saba Salman, Baroness Hollins is asked what hopes she has for her son, “I hope Nigel will be so embedded in his community that there will always be people who’ll look out for him, love him and care for him after I’m no longer here. That’s what every parent wants,” she replies.

Beyond words.