Youth and disability are often viewed as incompatible. More often than not, society associates long-term illness with ageing, grandparents in care homes or older relatives developing heart conditions. In most cases, they understand sickness as a language of recovery, like receiving a cancer diagnosis, accessing treatment and then ‘beating’ it.
These narrow ideas of illness mean it is hard for non-disabled people to understand that a person who has just finished school, or their exams, can become terminally ill. There is also a lack of understanding for disabled children who, once they reach maturity, become disabled adults. These adults now want (and should be able to) live and work independently without their parents’ intervention.
So what happens if a person requires help manoeuvring around their home, needs an extra pair of hands to brush their hair or to prepare meals? Many young disabled people remain living at home, often because their families, friends or partners take on unpaid caring responsibilities for them. These relationships can become testing, and in some cases, can even lead to unsafe environments for the young disabled person in receipt of the said care.
Although many people’s families will lovingly provide support for one another, it is often a lot to ask—especially given the lengthening working hours and additional pressure that the cost of living crisis has placed on households. So, if a young disabled person wants to make the leap to move away from family, perhaps to university or just to experience living independently, the gap of care must be filled. This necessary care should be undertaken by a social care provision, accessed through the council. However, this is often much easier said than done.
Molly, 25, is living with chronic illnesses that require assistance in daily activities and she is currently operating without care, despite ongoing appeals to her local authorities. In an interview with SCREENSHOT, she expressed how “the council outsources everything. The different companies don’t communicate with the council or each other—and most are impossible for me to make contact with.”
Delays are often being chalked up to the COVID-19 pandemic. That being said, however, this is merely a compounding factor. Ten years of austerity measures, including privatisation and contracting care agencies, are responsible for the decline in adult social care provision. According to a study conducted by The King’s Fund, between 2019 and 2020, 1.9 million people requested social care help from their local councils. But less than half of them were provided with some form of support, including those who were given highly inadequate services for their needs.
Rebecca,22, currently receives part-time care that is provided by her local council. She was set up with an agency provider via her social worker, which means she has limited choice in the care workers she uses. Although care work is an important job, like much of the service industry, it is underpaid and underappreciated—partly due to its gendered history. Brexit left a large gap in the industry as many entry-level positions were held by workers who came from other parts of Europe.
A cursory Google search will also bring up numerous stories of disabled people who have been harmed, abused and mistreated by care workers. All of these cases are not isolated incidents but are symptoms of a system that is truly broken at its core.
Rebecca herself told SCREENSHOT, “I have had issues with agency staff’s inappropriate behaviour and also noticed that some staff are very burned out and overworked. They often get to me having already worked a ten-hour day—reducing the quality of care they can provide.” Care workers deliver a form of support that can be vital in keeping disabled people alive. Overworked people often make mistakes and this puts disabled people in danger.
“I’ve had carers ask if we can skip my shower or not cook a full meal because they are too tired to help me,” Rebecca continued. This may seem like a small issue to a non-disabled person, but have you ever been physically unable to wash yourself for long periods of time? If meals are lost for multiple days a week and a person is forced to be unhygienic, the dignity and health of a disabled person’s life is reduced—and it is already in a precarious position in society today as it is.
Although they’re not nurses or medically trained to an ‘elite’ standard, care workers are able to administer a person’s medications or alert another service if urgent medical attention is required. Burnt out staff or agencies that cut corners in training in order to readily get new employees to fill the burgeoning gaps, again, place people on the other end at risk. Rebecca also went on to recall a terrifying incident earlier this year. “When I was suffering a prolonged seizure, one carer did not know how to respond and left without calling an ambulance,” she admitted.
Ellie, 24, is a full-time wheelchair user. Though she has also experienced ongoing difficulties with social care provision as well as finding carers to fit her working hours and plans, she is able to work and socialise with the help she has today.
“Having carers gives me a level of independence I can’t imagine my life without now,” she said on the topic of care workers changing her life. “For a long time, my mum was my primary caregiver—which worked when I was at school, but once I left and started work, I needed something more flexible. My mum is now able to go away and I feel comfortable staying at home on my own.”
Despite the care crisis, all of the people I spoke to want readers to know that care gives them freedom and it is not something to be pitied or looked down upon. “Someone once asked me if it makes me feel like a hospital patient in my own home, but in reality, it’s the opposite,” Ellie admitted. “I’m freer, more confident and having care staff allows me to get out and accomplish so many things.”