Talking with Katie Clarke from ‘Bringing Us Together’

Building on our successful and inspiring interviews last month, I connected with Katie Clarke from ‘Bringing Us Together’ and spoke with her about her life as a mother, carer and campaigner.

Tell me about what you do

It’s more that than a profession. I see what I do as a vocation and passion - I am driven with a fire in my belly. It’s more that than a profession.  

Tell me a bit about you.

I was brought up in North Yorkshire, and we now live in West Yorkshire. I’m Jewish, although not very religious now. My family originates from Eastern Europe.

Growing up, my parents did a lot of voluntary work in between their paid work. My mum set up the first volunteer centre in the country - she was always doing something and helping somebody, she was so ahead of her time. And my dad did a lot of charity work for the British Heart Foundation. I was brought up thinking that you do things for others - that’s just what you did.

They were very kind parents, very inclusive, with an open door policy. We have very much taken that on in our family home. Everyone is welcome in our house. We have extra rooms now that some of the kids have left home so we like to fill them!

I left school at 16, I then went to a secretarial college, and had a year away from home living and studying at agricultural college. I had a real love for travel and left the UK at 18yrs old, returning every few years to see family and earn some more money to go away again.  

I did many jobs as I was travelling – working on farms, fairground, nanny, on fishing boats, yachts, bar work and waitressing,  - I had so many  rich and learning experiences.

At the age of 26yrs old I got a job teaching English on a Vietnamese refugee camp in northern Hong Kong.  This was life changing and later led us to becoming a host family for young adult refugees from across the world.

I have had such a varied life - looking back, it’s all been about campaigning for equality and justice. I have had the privilege to meet many people with lived experience from all cultures and backgrounds, which has inspired and motivated me to work in this field of rights.

Tell me 5 things about you:

• I am a foster parent

• I walk every day at 6.30am with my dog and get my steps in.

• I have 6 children; I had 7 but sadly one twin died at a week old. I had 6 children under 9 at one point! I have been a mum for over 30 years now.

• I go to lots of music gigs and concerts.

• I love being in the mountains and feeling the sun on my face.

Do you consider yourself a carer?

I would not choose to use that term. I am a parent of a disabled adult and I have a son who has epilepsy.

I don’t ‘care’ for them by any means. For Nadia, I help her facilitate her life and give her a voice. I love and support all my children to be independent.

My daughter is amazing, she’s so resourceful, so strong and brilliant. She has no speech - she’s deaf, so we all sign in our family.  I learn every day something more about myself and how to be a better parent. She is a great teacher!

She has a communication aid, and was 5 years old child when she first got on.  This was really important to support her to have a voice and now she manages her own team of Personal Assistants and is regularly campaigning and busy on twitter.

She’s a wheelchair user and has travelled all around the world - more than me in fact!

She is an access ambassador, and is very political and active.

At home, we employ 12 Pas to support her. Managing that is a full-time job. Nadia has a lot of people in her life as she needs full time, round-the-clock support.

She’s has had PAs since 5 or 6 – so we are so used to people coming in and out the house. Some of them last years, so many people have given her such a great experience, and we have some amazing women and young people our  lives.

My son Jake has nocturnal epilepsy. His epilepsy is stable at the moment, doing a master’s in migration and climate change and the focus on disability - he’s very cool and kind, does a lot of work with refugees and is well travelled as well.

My other children bring joy and pride to me each day!

What challenges and obstacles do you face?

Over the years, the usual one’s that everyone does. Fighting to get the right education for Nadia meant we moved 100 miles to get her into mainstream school. We did a lot of campaigning and were very political about it - Tyne Tees did a programme on it as well, called ‘The love of Nadia’.

Social care is a huge barrier - and there is always the worry about cuts or savings made on her package.  We are best without services, to be honest. If they could just trust us and give us the money, we could just get on with it.

So I would say social care and education have been and are our main challenges.

How has covid affected you as a family?

My work has tripled. I have never worked so hard in all my life. There were so many zooms, I met hundreds of parents on-line through various projects and work. The biggest impact has been just so much work - it all happened so quickly.

I know just how tough parent-carers’ lives were before the pandemic and how they have just got much tougher. Also, right at the beginning there was a lot of fear and it’s not even gone away has it - some countries are shutting down again.

I enjoyed begin together with my kids; we were lucky; we ate well and were together - it was special. Nadia was here with us.

We are still very much affected by Covid. The PAs still wear masks at home. We are still doing tests and are quite weary. Yet, It’s the mental impact which was worse.

The biggest challenge I face daily is all the juggling! I am not the carer - I manage the PA team and that’s hard work. Recruiting is difficult, it’s always up and down, never quite relaxed, there are a few spaces at the moment and I take those ones as well as doing all the nights.

When Nadia’s ill, she gets very ill. Two weeks ago I was on the floor in her bedroom every night as she was so sick. It’s no joke, for our children who have acute health needs. We do get anxious at times and re-traumatised. I am aware of not overdoing it - but I always do. Nadia was in intensive care with Swine Flu 12 years ago so Covid 19 is a real threat.

Where do you get support?

My husband is amazing, my mum is wonderful and my kids are brilliant! I have got some really good friends, and of course other parent carers of course.

What have you learnt about yourself?

Not to assume and to never judge. To listen and learn from the stories and breathe.

I can fly off the handle sometimes. I keep the stress in really well and every so often I have an effing this and effing that - an explosion of effing.

My biggest teacher, though, is Nadia. Every day she teaches me how to be a better person, how to listen better, how to do better. All the time I am learning, 

How do you look after you?

I walk every morning - I have a dog so have to walk; I love walking. I eat well; I eat healthy food and drink lots of water and love nature. I need to get back to yoga. 

I can have enjoyable times - I love going to concerts and love films. On Saturday nights, we watch a film. Meeting up with a friend is lovely too.

Tell me about ‘Bringing us Together’?

I have set up two charities before, all about bringing people together. 

I was approached and asked if I wanted to set up a network. I met up with Debs Aspland who was key to the development of the organisation. A targeted piece of work has been working with families whose loved ones are in assessment treatment units – we work closely with NHS England and support families to have a voice.  We run lots of different workshops, are involved in work around social care and care charges, run many focus groups and believe in collaborating with others.

We are a small organization and have lots of parents involved, we have a good relationship with NHS England, and get funding through grants.

We believe in amplifying voices and working with others – it’s about doing things together, being a stronger voice and making a difference.

We became a Community Interest Company in 2014. We are guided by disabled people and disabled led organizations and I always say that we are a family led organization.