If you asked most people under 30 how they would react to the UK’s monarchy (at least in its current standing) being dismantled in their lifetimes, chances are, they’d be pretty happy about it. Until then however, whether you like it or not, it’s impossible to escape the Royal family’s comings and goings if you keep up with the news on any major platform.
Last week, the Queen was spotted at the Chelsea Flower Show using a mobility buggy to travel around the extensive gardens. In April 2022, she was rumoured to have used a wheelchair in public and before that—god forbid—a walking stick. All events were extensively reported on, with photos attached to back the claims—across tabloids and evening news shows. It seems mobility aids are high on the news agenda.
There is much to unpack about the obsession the general public have over celebrities’ health (royal or not) but the overwhelming response to the Queen using these aids has been pity, followed by distaste.
A mobility aid is associated with the elderly, the frail, and the unable to manage. For that reason, it appears baffling that the country at large takes such issue with the fact that a woman who is nearing one hundred years old needs to use one. But imagine people’s shock when they find out there are swathes of young people having to use such things too.
Ellie Darby-Prangnell spoke to SCREENSHOT about her experiences as a wheelchair user. Now aged 21, Darby-Prangnell has used a wheelchair since before she can remember. “I got my first chair when I was two years old after being diagnosed with Spinal Muscular atrophy type 2. I wouldn’t have been able to be anywhere except my bed without it. It’s my lifeline,” the fashion communication student explained.
Mobility aids function on multiple levels—they are tools for their user, as Darby-Prangnell described, but they are also symbolic, representative of illness. Although disabled people, myself included, view them as positive (once we have overcome our internalised ableism), a passerby can assume negative things from the sight of a chair or stick. Darby-Prangnell further explained: “Growing up I’ve had such a love/hate relationship with [my chair]. It’s what makes my condition visible to the world and therefore has invited ableist comments and attitudes towards me throughout my life.”
We have learnt by now that it is bad manners to comment on a person’s weight or appearance in general, but that lesson seems to have not stretched to mobility aids. “You need a licence for that thing!” says the guy who thinks he’s funny on the high street. “Bit young for one of those, aren’t you?” gets tiring pretty fast if you hear it every single time you leave your house.
Fiona is an 18-year-old who lives with complex chronic illnesses that cause symptoms such as dizziness, vertigo and instability. She recently started using a cane to support herself outside but is already sick of the looks she gets from others. She told SCREENSHOT, “It’s rare that I receive rude comments but the amount of stares feels analogous to an insult. I feel almost immediately self-conscious using it around strangers because of it.”
Acquiring an aid requires many disabled people to organise GoFundMes or drain their personal savings accounts because personalised and well-fitted wheelchairs are costly and can be hard to acquire through the National Health Service (NHS) for a lot of illnesses, particularly those that are viewed as ‘invisible’. The next stage of difficulty comes in navigating local towns and cities with your supposedly new-found freedom. Although many businesses advertise themselves as ‘fully accessible’, for those of us in chairs that tends to be a red flag rather than a reassurance of their inclusivity. Disabled people are not a monolith, their needs vary widely, including the types and functions of mobility aids.
If a gig venue, for example, assures website visitors that it will be fully accessible, but Google Maps shows steep steps to its entrance, it’s likely those of us in chairs will be entering through the backdoor, maybe the staff entrance and sometimes the service lift. You’ll have to sit on hold at the box office because you can’t get a confirmed wheelchair ticket online. No big deal, right? Well, you might be told you have to queue in a separate place from the rest of your large group of friends, that you can’t hang out in the lobby to wait for the support act, and every time you want to go to the bar, you’ll need a friend to shout your order for you. All of a sudden, your entire night is a reminder of how different your disabled body is, and what constant mental energy it takes to navigate things that are meant to be fun and carefree.
Even outside of venues and cities, there is no such thing as a spontaneous day out. Freja, who lives in the Scottish Highlands, told SCREENSHOT: “Getting my wheelchair and my smart drive power assist have allowed me to actually get outside again and do my favourite thing—walking the dog. The challenge has been finding walks that are wheelchair accessible as very few have been advertised as this. I have had to make my own map of possible accessible walks in the Highlands and am slowly working my way through them taking photos and giving descriptions so it can be a useful resource for others.”
All this to say that although there is a lifetime between the Queen and the countless young disabled people using wheelchairs and other aids, the public response remains the same—most strangers view us as unsightly, our wheelchairs remain a symbol of sickness for the average non-disabled person, and it seems like it’s simply too much for them to handle.
Although many have recently been distracted by politicians’ parties and the fact that the whole of the UK is barely coping with rising energy costs and stagnating wages, there is a group of young people stranded in time, left without support or even sympathy, as they learn to adjust to their new lives with chronic illness.
New statistics from the Office for National Statistics (ONS) revealed that 1.7 million people in the UK are currently living with ‘long COVID’. That’s one in every 37. Long COVID appears to be a new phenomenon to many who have not experienced post-viral illness symptoms before, but it is in fact just the latest in a long line of conditions—for example, myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, currently affects over 17 million people worldwide. So why, if we had known that long COVID was bound to happen too, were we not better prepared?
Someone is classified as having long COVID if their symptoms persist for over four weeks after infection, with most people reporting struggling for over three months to cope with the decline in health since infection. The most common symptoms reported are extreme fatigue, breathlessness, increased heart rate from minor activity as well as inability to concentrate, light and noise sensitivity, migraines and digestive issues. Doesn’t sound like much fun, right?
In order to accurately paint the experiences and struggles that people suffering from long COVID go through, SCREENSHOT spoke to three young individuals whose lives have been profoundly changed by the virus. Jessica, 25, was an active primary school teacher before catching COVID-19 in late 2021. She was working 60 plus hours a week, rock climbing after work and socialising on the weekend. Until she got sick. “Nobody prepares you for the crippling PTSD that long COVID gives you—suddenly being bed-bound and you getting up to go to the loo feels like the equivalent of having just run a marathon. Watching people around you live their lives, the jealousy was overbearing,” she shared.
Alex was working as a teacher in Madrid, and after a severe case of COVID, has been left with multiple health conditions including focal frontopolar epilepsy and vestibular migraines, as well as the regular long COVID symptoms to contend with. Alex explained, “The hardest transition was mentally accepting that I’m not able to do what I used to be able to do. It has been extremely isolating, especially at a young age, as all my friends are very outgoing and sociable. I can no longer drive and don’t live in London, so getting around is much more difficult.”
Alejandra, 23, is doing a master’s degree in literary studies, but long COVID has thrown a spanner in her plans to graduate. She spoke to SCREENSHOT about the struggle in getting her peers and professors to understand the illness, and the sudden change in her ability to attend classes. “I missed [one professor’s] class six times because I could literally not get up from bed and I sometimes faint so it’s not safe to travel on my own. She has now threatened to fail me if I don’t attend all of the classes that we still have.”
Although Alex, Jessica and Alejandra have all had some form of support from a partner, friend or family member, they reported a severe decline in their mental health since becoming unwell. There is an obvious lack of structural measures in place to tend to the needs of newly chronically ill young people, forced to learn the limits of life with a condition for which there is currently no cure.
When she asked her GP for mental health support, Jessica was sent to therapy where a counsellor suggested she go for a walk or see a friend to cheer herself up. After she explained that she was unable to leave the house or even work, she was told she would have to go back at some point in order to earn money. Thanks for the advice, Captain obvious.
Alex applied for Personal Independence Payments (PIP), a government benefit paid to support those unable to work due to long term illness. He was declined, with the service unable to recognise long COVID as a disability, and therefore ‘truly’ representing an inability to work.
It is this refusal to accept a new generation of young people, disabled by a virus the government failed to control in time, that fuels this second pandemic. Mental illness is a side effect of chronic illness. Science (and the lived experience of thousands of chronically ill and disabled people) tells us that those diagnosed with illnesses such as ME, fibromyalgia, Crohn’s, and now long COVID are at a much higher risk of having their mental health negatively impacted.
It is a mistake to think it is the conditions themselves that cause depression and anxiety. Sure, the day to day life of a person with chronic illness can be mundane, painful and repetitive. But it is the lack of empathy, infrastructure and universal basic income that makes life near impossible.
On 8 April, it was announced that 27-year-old Abhijeet Tavare took his own life after struggling to cope with long COVID. He saw five different doctors before that, who all failed at helping him (unsurprising given the lack of treatment plans or medication available for the condition). In his final letter found by his mother, Tavare stated that he could no longer go on living with the illness.
The young man’s death is a tragedy, and it represents a striking example of the chronic illness-induced mental health crisis that is festering out of the public eye. The NHS is on its knees from yet another wave of acute cases—not to mention playing catch up on years of delays for people suffering from unrelated conditions—all while grappling with slashed funding wrought by punitive Conservative austerity measures. Urgent intervention is required otherwise we face losing swathes of brilliant young people to a new kind of mental health crisis.