image of parent in wheelchair with child on lap viewing a fish in a large tank

Living with disability: ‘Personal assistants are my ears, hands and body’

Nadia Clarke, who has cerebral palsy and is profoundly deaf, employs a team of eight PAs to help her study, work, socialise and travel

Personal assistants have made a profound difference to Nadia Clarke’s quality of life. “Without PAs I’d be left frustrated and I think it would have affected my mental health,” explains the 25-year-old from West Yorkshire, who has cerebral palsy and is profoundly deaf.

“If my parents had continued the care and support, I’d feel like I was physically still a child – I think I’d have been very lonely.”

Clarke is one of about 70,000 disabled people in England who between them employ 145,000 personal assistants.

Clarke uses her personal budget to pay for a roster of eight PAs and has used this type of support since she was eight. Her PAs enable her to go to college, work mentoring children and young adults who are learning to use alternative augmentative communication, and be independent from her family.

“They are important for my communication, support and social life – my ears, hands and body at different times – and they provide emotional and psychological support,” she explains.

Clarke’s family are keen globetrotters and she was able to fulfil travel ambitions of her own two years ago when she spent a month backpacking in Australia, Hong Kong and Singapore with the support of two PAs.

One of them was Melanie Tiplady, Clarke’s PA for four years, who helped with the meticulous planning. She recalls trying to keep up with Clarke on the dance floor of a hostel nightclub in Cairns until the early hours.

“PAs will assist me to drink cocktails and, when I feel it’s safe and I’m in the mood to dance, they will help me out of the chair and hold me up while I dance. They help me meet people by signing what is being said,” explains Clarke.

Tiplady has supported Clarke to attend the V festival, watch Bonfire Night fireworks in London and spend time with her godson, Ned.

“Nadia has so much drive and enthusiasm, she wants to get stuck in like everyone else. Over the years there have been PAs who’ve been too shy, or timid or patronising – or just not had the energy,” says Tiplady, who regularly keeps in touch with the other seven PAs via a WhatsApp group.

During the day she works at a special needs school, offering one-to-one support and is a PA to two other people. “Being a PA has made me more confident as a person and – although it sounds cheesy – I enjoy enriching Nad’s life in the best way I can,” Tiplady explains, adding that she also values the flexibility.

All of this is only possible because Clarke had the autonomy to hire her own PAs and set her own schedules. As she explains, it has given her firm control over her own life, rather than be limited to simply being “cared for”.

Seven years ago, Audree Shephard spent 10 months in residential care before deciding she’d rather be supported by PAs in her own home. The former headteacher has dementia and OCD. A broken leg left her bedbound and in need of constant support.

Making the switch saved Shephard’s life, says her daughter, Sally Percival. “PAs gave her back choice and control over absolutely everything in a way that social care-commissioned services couldn’t,” she says.

When she returned home, Shephard composed a living will, which stipulated that she wanted to be supported by PAs at home. She asked that the PAs would be kind, interested in her and non-judgmental.

Laura Sewell has been one of her PAs for four years and knows Shephard is happiest with a pink cushion on her legs, a particular book on her lap, and a precisely-placed teddy bear.

“I bring her photos and tell her about my day; she likes you to be calm and talk to her and explain what you’re doing. She knows who I am and that I’m not going to hurt her,” says Sewell, who splits her time between being a PA and working in a nursery.

It’s important to get the relationship between client and PA right, says Percival. “From the outside, as she becomes increasingly less verbal, you might think my mum is a passive recipient of care, but that’s why having the right PA is so important,” she says.

“PAs give consistency and companionship – they offer dignity and they know the little intricate details about my mum, that’s what makes her happy.”