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Harm, abuse and mistreatment: Inside the lives of young disabled people tackling the care crisis

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.”

Ableist airports: what it’s like travelling as a disabled person amid shortage chaos

Though the summer season is in full swing for many, the joys of travelling to a new place for a well-needed break have remained a stressful feat, even after two years of being locked up inside. The COVID-19 pandemic continues to cause complications to trips—with the knock-on impacts of staff shortages and missing suitcases that make getting to your destination in one piece quite a task.

If you’ve had the misfortune of breaking a leg on a girls’ trip to Ibiza, or travelled with older members of your family, you may have experienced what the travel industry (condescendingly) calls ‘special assistance’.

Special assistance is the service airports and airlines provide to disabled, elderly or injured people, to ensure they can transit safely. In theory, it is a simple self-registration system that a traveller can use, alerting the airline at the time of booking what their access needs will be on the day of travel. However, it rarely goes to plan. Invasive questions, last-minute changes, being left in hallways or forgotten about on a plane—it is more often than not a reminder that your disabled body is an inconvenience, nothing more.

In April 2022, I flew home from Luton airport, just as the news began to spread about the industry’s staff shortages. A last-minute gate change and no assistance worker who knew an accessible route to the plane left me sliding down three sets of stairs on my bum as a last resort to reach the entrance of the gate. I was lucky, I have working use of my legs, and I could find a way to the plane.

For other members of the disabled community, there would have been no options at all. It is not only the act of doing such a thing—having people stop and stare—that feels humiliating, but the internal battle of feeling like you, the disabled person, are a burden.

By the time the transit team loaded me into the plane, I was sobbing. I had delayed the flight, people glared as I got into my seat and an overwhelming feeling of grossness came over me. I felt dirty, from sliding across airport stairs but also for causing a fuss, hatred for my body that didn’t work like everyone else’s. This is internalised ableism, my mind absorbing the idea that society perpetuates: disabled people are less than, a nuisance, a waste of space.

This year in particular, the ‘summer of chaos’ as the tabloids are calling it, causes extra anxiety for those of us travelling with chronic health conditions. Amber, who suffered similar grievances, spoke to SCREENSHOT about her recent experience travelling home from a holiday. “The airline told us it was a three-hour delay, but when we arrived to board, the flight had been cancelled. I had already spent three days of my holiday in hospital with illness complications.”

Amber’s flight was due to take off in the early hours of the morning, and she had slept on an airport chair waiting for the new flight time. “I can become very ill when I sleep so it wasn’t ideal, then when the cancellation was announced, all of the airline staff left, and there was no one to help,” she added.

Sure, these types of unplanned changes can cause havoc to all travellers, but more so, they respectively place chronically ill travellers in a very specific kind of danger. Inability to access mobility aids, being forced to sit or stand in positions that increase chronic pain and the likelihood of arranged special assistance being lost or not properly communicated are a few of the many ways that an airport experience this summer can be anything but smooth sailing.

Even prior to this disruptive travel season, travelling from one country to another has always been a struggle if you’re disabled. An American disabled activist Engracia Figueroa died last year while being forced to wait five hours in an airport wheelchair upon discovering her own chair had been broken in transit.

Custom wheelchairs can cost tens of thousands of pounds, and are made to accommodate the specific person who is using them. Your chair travels in the storage area of the plane, and the likelihood of damage is high. Figueroa developed a pressure sore from the airport chair which became infected and led to her death.

Lauren, another disabled young person living in the US, spoke to SCREENSHOT and expressed her constant worry while travelling with her chair: “If my wheelchair dies, then my legs are broken but every one of my friends who uses a wheelchair has experienced damage during a trip to a piece of equipment.” Society still has a narrow view of disability, a middle-aged white man who has experienced traumatic injury is the only wheelchair user we know or even respect. Lauren confirmed this by stating that while travelling alone as a young woman, “of course I am taken less seriously.”

A multifaceted approach to disability is required if we are to improve the way disabled and chronically ill travellers are treated on their journeys. We need accountability from airlines that damage people’s lifeline equipment, we need better-trained staff and for them to be adequately paid to avoid industry shortages. There must also be an understanding from other passengers that disabled travellers are not the cause of the delays or hold-ups—it is (as it always is) a failing system that lets us all down.