Navigating life with a disability comes with many unique challenges. One of the most significant hurdles can be finding the right care when your primary caregiver can no longer support you. Isaac Harvey MBE, a well-known disability advocate, speaks candidly to Kate Stevenson about outgrowing his family caregiver
Isaac Harvey MBE has spent the majority of his life raising awareness and advocating for disability hts. Through it all – from getting awarded an MBE, to carrying the Olympic torch and modelling at London Fashion Week – he’s had his mother by his side: “She gets me in and out of my chair, takes me to the toilet, looks after my personal care, makes me food – I rely on her every day,” he explains. But, as his mother ages the physical demands of caregiving have become more difficult for her to manage, which has left Isaac in a vulnerable position.
EXPOSED
Though other family members can help Isaac, this isn’t a perfect solution. “I feel like my friends and family, especially my brother, are more like my carers than my actual brother or friend,” he admits. While he is incredibly grateful for their support, the dynamic of these relationships has inevitably changed. “It would be nice if we could just hang out without having to worry about my care. Sometimes I wish there was more of a separation between the two,” confesses Isaac.
Without a primary carer, he feels helpless. “I can go out by myself, but it’s not without complications. I can’t go to the toilet by myself, so I have to hold it until someone can help me,” explains Isaac, who admits it’s impossible to look after himself independently. “I do a poor job at putting my wellbeing first. I avoid eating and drinking so I don’t need the toilet. It’s not something I’m proud of.”
RED TAPE
Beyond these struggles, Isaac is stuck in a bureaucratic nightmare. He’s been trying to secure professional care since 2019, but the process is moving at a snail’s pace. “I was granted 12 hours of support a week while I wait,” he says. “That’s not even a day’s worth of support!”
When the COVID-19 pandemic hit, it put everything on hold: “It’s only because I met an amazing advocate, Jacqueline Winstanley, that I’ve started making progress again.”
But he’s quick to point out that, unfortunately, his case is not unique. The care system in the UK is notoriously slow, leaving disabled people waiting months, or even years, for the support they need. “It’s very frustrating. There are so many barriers and ‘gatekeepers’. It’s not a human- centred process anymore,” reveals Isaac. “We’re seen as paperwork or bits of evidence when, really, this is people’s lives at stake.”
EXHAUSTED
It’s easy to understand why Isaac is at his wit’s end. The emotional toll
of this drawn-out process has been significant: “It’s like I’m hitting a brick wall over and over again. By the time I get the help I need, I could be totally burned out,” he worries.
If Isaac, who has achieved so much in his life, still struggles to find basic support, what hope do the rest of us have? “Of course I’m frustrated, but I can’t imagine what it’s like for other people,” sighs Isaac. “I’m lucky. I have advocates, I have a support system – not everyone does.”
FOCUSED
Some days, it feels like the weight of the disabled community is on his shoulders. He feels a lot of pressure to be the perfect advocate, even when he’s struggling. “This isn’t just about me,” reasons Isaac. “There are a lot of unheard stories. So many disabled people are stuck in the same situation, unable to get the support they need.” He knows that many people are forced to go without care, leaving them isolated at home with little to no independence: “I feel for those people who don’t have a voice in this process.”
In spite of the hurdles, Isaac remains staunchly determined and optimistic: “The process is crazy, and it takes longer than it needs to, but I know that when the right support is eventually put in place, it will completely change my life.”
REFORM
But even then, it doesn’t stop the “sour taste,” knowing that other disabled people still need to fight so they can get the care they need. Isaac says the system needs major reform: “We’ve lost the collaborative spirit of working together. The process shouldn’t feel like a battle but, right now, it does.”
He thinks it needs to become more personalised, with more face- to-face interactions focusing on the individual. “Everyone’s needs are different, and that should be recognised,” he explains. “We need to be more understanding of each other.”
THE FUTURE
It might feel hopeless at times – and Isaac truly relates to this – but he encourages people in similar situations to push through. Though he’s still sifting through piles of paperwork, he remains positive about the future. In the long run, finding a new carer will strengthen his relationship with his mum… even if he felt like he was betraying her at first.
“I’m changing our dynamic, but I’m not ending our relationship. There comes a time when you’ve got to do what’s best for both you and your primary caregiver,” emphasises Isaac. “It’s not about saying goodbye to their care, but recognising when things need to change.”