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.

Nadia Clarke and her godson Ned on a visit to a sea life centre. Melanie Tiplady, The Guardian

Kirstie Brewer, The Guardian 9 April 2018

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.”

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