Radio 2 DJ Jo Whiley explains why her sister Frances, who has learning disability cri du chat, has inspired her to lend her support to Mencap’s latest campaign.
You’re an ambassador for Mencap. What does the charity mean to you?
I’m an ambassador for Mencap in part because my sister Frances has a severe learning disability. People with a learning disability are marginalised in society and they don’t really have a voice, so they need people to speak up for them and defend them and make important points because they sometimes can’t do it themselves. Working with Mencap is the perfect way to give people with a learning disability a voice.
What’s Frances like?
Frances is a real character. She can be very strong willed and she can throw the most tremendous tantrums. But she is also incredibly loving and caring – when she gives you a hug, you feel as though you’ve received a gift. Mum and dad have always treated Frances like a person rather than a problem and this has definitely allowed Frances to express herself and develop her winning personality.
What was life like for you growing up?
I used to spend my days wobbling around our cul-de-sac on my white mini push bike and playing out with the other kids, and then in the evenings, I would excitedly wait for dad to come home from work. As soon as he’d get in, he would put music on in the house and we would sing along – not necessarily well! – to our favourite tracks.
Then when Frances was born, our family had to adapt. We could never go on holidays, as Frances would become agitated if she was taken out of her routine, and our day-to-day lives were filled with accident-prone Frances’ trips to A&E and my parents taking turns looking after her in the evening until she eventually fell asleep at around 5am. My childhood wasn’t normal, but the older I get the more I wonder exactly what a normal childhood is.
What’s your fondest memory from your childhood?
When I was 11, I joined a swimming club, which I absolutely adored. I will always remember the time when Frances, mum and dad came to watch me at a swim meet. There I was, bent forward on the starting block. The starter called: “Ready, steady…” and then at the top of her lungs, Frances boomed “GO”, her voice bellowing out like a fog horn. I can’t recall just how many false starts she caused throughout the years, but there was no keeping her quiet!
You curate the annual Little Noise Sessions, in aid of Mencap, to raise awareness of and challenge perceptions about learning disability. Have you and your family faced any negativity towards Frances?
Frances and the family never faced any negativity in the village where we grew up; people accepted Frances and took her openly into their lives. We always played out in the street with the other children and they did not judge Frances because she was ‘different’. But I remember sensing the difference when we went into the outside world. I hated people noticing Frances and I would become incredibly fierce, staring down anyone that would look at her for too long, holding their gaze until finally they looked away, embarrassed.
Your parents care for Frances full time – what sort of help do they get?
Since having Frances, my parents have benefitted from the kindness and help of others – neighbours, friends, health professionals, social workers and all of the people in the local village. But this support alone will not be enough as my parents grow older. Without regular breaks from caring for Frances, my mum and dad could reach breaking point.
You’re backing Mencap’s new Short Breaks campaign – what’s the campaign all about?
Eight in 10 people who, like my parents, care for loved ones with a learning disability have told Mencap that they have reached a moment of emotional and physical crisis, where they feel they can’t go on, because they don’t get enough breaks.
Mencap has found that the money put in to short breaks by the government was not actually spent on the support that these families desperately need. In fact, councils across England have actually cut these services.
It is completely unacceptable that there isn’t more help out there for people who dedicate their lives to caring for a vulnerable member of their family. Mencap is calling on the government to ring-fence the money spent on short breaks support in the future, to make sure that every family carer that needs a short break, gets one.
Why do you think that this campaign is important?
For me personally, watching my parents deal with sleepless nights and Frances’ unpredictable behaviour and tantrums is gruelling, especially as my parents are getting older and have needs of their own. Their lives are totally given over to caring for Frances and always will be, but they need a break, just some time to relax and recharge their batteries every now and again.
What would you like to see change for people with learning disabilities and carers?
Short breaks benefit both a loved one with a learning disability and their family carer. We need better access, more availability of services, services that better meet complex needs.
Lastly, what has Frances taught you?
Frances really has taught me so much. I think that growing up with my accident-prone sister has helped me to keep calm in a crisis, and Frances has also fuelled my unwavering passion for good music – even though we very rarely agree on what’s hot and what’s not! Finally, seeing the way that my parents have raised Frances has definitely made me appreciate the hard work that goes in to raising children and maintaining a good marriage. We aren’t a normal family but I can’t think of a family I’d want to belong to more.
To find out more about Mencap’s Short Breaks campaign and to see how you, like Jo, can get involved, head to www.mencap.org.uk/breakingpoint.
If you feel like you, like eight out of 10 carers, are reaching breaking point, don’t suffer in silence. Call Mencap Direct on 0808 808 1111 for support.
Enable March/April 2013