I grew up in Bethnal Green and was an only child. My father died suddenly two months before I was born, so when I was born, I only had my Mum and my Nan. My Nan brought me up because Mum had to work. That’s just how it was.
I grew up with hearing problems, during the Blitz in London. I’d be in a shelter, laying there while they put drops in my ears and the bombs were falling. It was a nightmare. So I’ve been hard of hearing my whole life, but it just got worse as I got older.
I first met Faye and Ben, Luca’s mum and dad, in hospital on the day Luca was born – I happened to be there visiting another child. He had just been diagnosed with CHARGE syndrome, a rare genetic condition that affects his ability to see, hear and balance. Faye and Ben were terrified he wouldn’t be able to communicate, or enjoy things that other children do.
Luca’s three now and it’s been a hard road for the whole family, he was in hospital for the first eight months of his life. But, thanks to the generosity of our wonderful supporters, we’ve been there every step of the way to help Luca to connect with the world.
In 2018 we all became worried about loneliness. It is not a new problem. But last year and thanks to the Jo Cox Commission, the Minister for Loneliness, the Campaign to End Loneliness, the disability sector working together, and countless other organisations, it has become an urgent one. We also have
our first Loneliness Strategy. 2019 is the year in which we seek to tackle the loneliness epidemic.
There are 9 million of people in the UK who are lonely. We have an increased understanding that loneliness is bad for individuals and communities. We know that the feeling of being by oneself with no one to rely on, to talk to, or to share life with causes pain.
Why is that? On the one hand, we have a desire for company. We want to be part of a group. We know social life is a benign power. But sometimes it feels we were put on this world to remain separate from one another, rather than come together as a community. Instead we nourish human suffering and loneliness.
Another year ends without a long-term sustainable funding solution for social care. Last week, Minister for Care, Caroline Dinenage, quietly confirmed that the Social Care Green Paper will be delayed until January 2019.
I’m deeply disappointed, yet sadly not surprised, that the Social Care Green Paper has not arrived in time for Christmas. It is one of many crucial reforms side lined by the Brexit chaos, along with the NHS Long Term plan.
For over a year the government has repeated it’s tired old mantra, that the green paper is ‘coming soon’. A government that really wants to solve the social care crisis finds a way; those that don’t, find excuses.
Further excuses and delays will mean disabled people don’t receive good quality care or are unable to access the care they need. It leaves more and more disabled people at crisis point and increasingly reliant on NHS services which are already under pressure.
At this point in time, the crumbling social care sector has neither a long-term or short-term funding solution. The Autumn Budget delivered nothing but a £650 million temporary sticking plaster, only a quarter of the money needed to solve the social care crisis. Meanwhile, many disabled people have been left struggling due to the lack of urgency the government has shown this issue.
My daughter Mia, who is two-years-old, has a rare genetic condition, which causes epilepsy and severe developmental delay. Her condition also affects her motor skills and muscle tone, so she’s unable to feed herself and it’s unlikely she’ll ever be able to walk.
Mia also has a visual processing condition which means although her eyes can see, her brain is unable to process the information. She can distinguish between light and dark, but she can’t see detail, so going into darkness can be distressing for her as she struggles to understand what’s happening.
There are so many benefits for disabled people to be active; increased confidence, making social connections, reducing loneliness, and increased motor skills, to name a few. These are all benefits we’ve witnessed first-hand through our Sense Sports sessions.
But there are also barriers to participation that exist. From perception about what disabled people are capable of, through to practical barriers such as accessibility of venues, transportation, and familiarity of the environment.
So as a new Regional Sports Co-ordinator, having been in post with the Sense Sports team less than three months, I was excited and admittedly a little nervous to be organising my first inclusive sports event, to help raise awareness about inclusive and accessible sport and activities.
I first heard about Sense from my dad who has volunteered with with the charity for years. He told me about how good they were and thought I should give it a go, so I did! That was around 2012, and since then I’ve volunteered on several Sense Holidays. I’ve been to lots of great places all over England with Sense – from little cottage holidays to activity centres and lots more.
I ran my first half marathon when I joined Sense five years ago in 2013. I have now run Royal Park’s on four occasions. I’ve also taken on the Great North Run (my personal favourite), and London Landmarks last year. So, Sunday’s Royal Park was my sixth Half Marathon.
To give you some context, I was no great athlete at school. I ran my first 10k to see if I could do it. I’d say I’m more a work-horse rather than a race-horse. More slow and persistent than fast and furious. Apart from a positive blip last year when I knocked 15 minutes off my time, I get progressively slower each time. But I must say, it has positively changed my life in so many ways. Continue reading “As CEO for Sense, I was proud to join fundraisers running the Royal Parks Half”
We were delighted when we discovered we’d won the first prize of £4,000 in the Sense Raffle! We discussed what we should do at some length and finally decided it was the ideal opportunity to visit our dream destination, China.
This week celebrates National Guide Dog week. Several people with Usher Syndrome (a genetic condition that affects both sight and hearing) have been in touch with me to ask me how my life changed once my guide dog Ike came into my life. This is my story so far.