Katie Clarke – campaigning mother with time for others

Katie Clarke found time in her busy life to talk to Seán Kelly
When Katie Clarke meets me she combines the trip with collecting the latest volunteer recruit and it soon becomes clear that multi-tasking is a necessary skill if she is going to fit all her tasks into the day.

That she has mastered the skill is evident from her busy life. Katie says her favourite job is being the mother of six children but she also holds down a portfolio of freelance and independent work, is an activist and campaigner as well as managing a team of support staff for one of her children. Her daughter Nadia was born with complex disabilities, including profound deafness, a fact that has shaped Katie’s life ever since. Now, 23 years later, she describes Nadia as her main inspiration – even her teacher. “Most of what I have done since I have had children is because of Nadia and seeing how she fits in”.

Asked to describe herself Katie says she is an activist-mother. But she adds with a smile, “a nice activist”. After more thought she settles for being “an activist for my own family and a campaigner for other families”.

Inequality
Nadia does not have learning disabilities but many of the children of families Katie works with do and she says many of the issues are the same. She first became aware of inequality when in her late teens she spent over a decade trekking round the world. “I learnt so many things – about life, about society, about inequality”. She returned and got married and after a first child gave birth to twins at 30 weeks. Nadia’s brother lived for only a week. “Obviously that was really traumatic. Nadia was seriously ill and we thought we were going to lose her. It was at that point I knew that nothing would ever be the same again”.

The next challenge was to find inclusive education for Nadia. “We lived in Northumberland and we were determined she should go to a mainstream school”. Katie went to an Inclusive Education conference, taking another baby with her, and discovered the social model of disability which she describes as a lightbulb moment.

“That was life-changing because I met amazing disabled people and I also started to meet parents at Parents for Inclusion. It was brilliant to meet people who were like-minded”.

The family moved to Halifax because of Calderdale’s commitment to inclusive education.

Nadia uses British Sign Language and so all the family sign, as do her personal assistants. Nadia also uses a Dynavox, an electronic communication aid that speaks. It was seeing the benefit of Nadia having a voice that led to Katie setting up a charity 15 years ago called “1Voice Communicating Together” with a speech & language therapist, Tamsin Carruthers. The charity supports families with young disabled people who use alternative communication aids and aims to help change attitudes and how services think. This small charity with no paid staff won the Guardian Charity Awards and Katie herself was made an honorary Fellow of the Royal College of Speech & Language Therapists.

Thanks to Katie’s contacts and 1Voice Nadia grew up with the message that it’s no big deal to have an impairment. Nadia is now a role model with 1Voice working with other young people with disabilities at family events, encouraging them to ‘think big’.

Katie set up the Calderdale Parent Forum, one of the first in the country, to give families a voice in the planning of services. She then joined the National Network of Parent Carer Forums as the Yorkshire and Humber Rep but her biggest love, as she put it, was just being with families, listening to them and sharing and giving each other information and mutual support and respect. She says, ”It is tough, really tough. The hardest job in the world is to be a good parent”.

Next, she worked for Contact-a-Family as a Parent-Associate and at the same time set up Visits Unlimited. Visits Unlimited provides training for staff in the tourism industry about making their services accessible and welcoming for disabled people. Katie tells me that people often come into a Visits Unlimited session looking scared. “But then they get into it because it’s fun and informative. It’s great to see people’s lightbulbs go on like mine did“.

Purpose
As a mother Katie tries to help keep Nadia happy and living with purpose. “The purpose bit is very important. To make that happen in a world that disables her, but also a world that is really changing with austerity, is incredibly difficult. The hours that my husband and I put in are unseen and unpaid. It’s our duty as parents but we save the local authority thousands of pounds”.

Despite this Katie says that parents are not treated well by local authorities. Parents who manage direct payments are unfairly scrutinised “to the penny – much more than organisations that provide care”. She knows families who are losing their support hours because the parents can’t provide outcome-based evidence on how the money is spent. “And they only get six hours a week”. she says.

Nadia has nine personal assistants. “We pay much more than we are supposed to pay on the direct payments. We juggle that by having a volunteer”, she explains. Nadia interviews prospective staff and as a result they have a ‘dream team’. Surely this means there are a large number of people to feed? “Yeah, I feed everybody who is in our house. I am not very good at cooking for two but give me ten and it’s no problem!”

Two years ago Katie began a new social enterprise called Bringing Us Together with Debs Aspland who lives in Kent. Bringing Us Together uses social media to tell families about what is happening such as campaigns. “We aim for positivity because our lives are tough, what with the cuts to social services and all the incredible stresses of family life”. Bringing Us Together is now running a course about building the resilience and emotional well-being of parents.

We discuss the sometimes unfair and negative view of parents from social services staff. Katie says that parents can sometimes be antagonistic. “They may have had a sleepless night with kids having an epileptic fit. Parents deserve a medal. We are not the enemy!” she says.

Nadia has had eight social workers in the last four years. She is hoping to go to College but needs an extra £7,000 to live there. She’s got a new EHC (Education, Health and Social Care) plan. Education have been great but social care haven’t been contributing. “They have told us “categorically” there is no more money for Nadia. How do you tell Nadia? She bursts into tears. Those words like ‘choice’ and ‘control’ may as well be fictitious, because the control is with social care budget holders”. Nevertheless Katie remains determined that Nadia will go to college. “We are in what I call negotiations”.

Dreams
“Nadia has been brought up to have those dreams. She knows that her brothers and sisters can go off and that there she would be, still living with mum and dad. Nadia knows how much we do to support her even if she tells me to “F. Off” sometimes on her Dynavox! Direct payments – great idea –but actually it’s bloody hard. And it just takes over your whole life”.

Somehow though Nadia herself provides the balance. “She doesn’t drain us, she uplifts us. I’ll come home now and Nadia will ask me where I have been, how’s it been and what you’re like. It’s uplifting. It’s interesting. I learn to be a better person. She tests me all the time and I’m not a good enough parent when it comes to Nadia. I have to learn a lot. I learn a lot more through Nadia than anybody else can teach me”.

How would she like to change the wider world? “I see myself as a seed-thrower. Not really digging them in but just flinging them out around the country. They are probably wild red poppies growing everywhere, a few sunflowers, and a bit of sun. No barriers, just fields of poppies. And poppies are equal you know, there’s no one that stands out differently, everybody is the same”.

Bringing Us Together has a new project called Justice Together which is being developed with the charity Respond. “The plan is for families to have circles offering skilled support – for example, a counsellor or help with their support plan, a psychologist’s assessment, an independent social worker to stop the whole family going into crisis”. The aim is to prevent further deaths like those of Connor Sparrowhawk (Justice for LB) and Thomas Rawnsley.

Katie’s powerful online blog called “Havoc in Halifax” about the family’s life and the challenges they face is open and often funny. Does the family mind? “No they are cool. And we’re a sort of public family anyway. When you have a team of nine people in your life as well as social workers coming in, you’re pretty open”.

Space
So what’s next? “There won’t be a next. This is it for the next five years. Then I would like to have space to read more books, do some long walks and go out for meals with some of the wonderful mums I have met across the country. I am a real ideas/project person. I love setting up projects but I can’t set up anything else. After Bringing Us Together and Justice Together. I have to stop now”.

Or maybe, I suggest, you could just throw a few seeds out and let somebody else cultivate them? Yes, perhaps, she laughs.

Bringing Us Together: http//justicetogether.org.uk
Justice Together: http//justicetogether.org.uk
Katie’s Blog “Havoc in Halifax” : https://katieclarke2014.wordpress.com