The UK government has been proposing some possible changes to the disability benefit system, such as offering food vouchers instead of cash, giving one off payments instead of monthly payments, and sending mentally ill people to therapy rather than giving them money. All of these ideas would have harmful implications for disabled people.
Food vouchers cannot take the place of disability benefits as these will not cover rent, bills, supplements, private prescriptions (due to NHS failures) and other things disabled people need money for.
One-off payments also cannot replace PIP because we often have recurring high costs to pay such as heating bills due to temperature dysregulation, private consultations and follow-up appointments due to a failing NHS, and supplements.
Sending mentally ill people to therapy rather than letting them get PIP is dangerous because psychological therapy takes a long time to work and people need money in the meantime. As well as this, not everyone responds well to psychotherapy as our failing mental health system ignores the role of gut dysbiosis, inflammation, nutrient processing issues, food sensitivities, chronic infections and other physical issues that can cause serious psychiatric symptoms, not to mention the amount of people who get misdiagnosed as mentally ill when they have a physical disability like POTS or ME.
Those few people who try to “play the system” and get benefits they don’t need won’t be gravely harmed by this, but people who are genuinely disabled will be. No one chooses to be disabled or unable to work - it isn’t fun like people may think. These people are sick and unwell at home all day and isolated, not on holiday. They are not any less worthy of having their basic survival and healthcare needs met. It could happen to anyone, even the most hard-working person. Disability has nothing to do with work ethic.
Lately, I have seen a dreadful amount of ableism (discriminatory attitudes towards disabled people) on social media and in daily interactions, surrounding disability benefits. Comments calling people “scroungers” or “useless life forms” have been made, without thought as to how these attitudes harm the disabled community.
The UK government are currently pushing the idea that people should “lose their benefits” unless they “work from home” - forgetting that those who can’t work at all actually need the benefits most.
According to the disability charity Scope, there are 16 million disabled people in the UK alone. Sadly, many disabled people are either unable to work, or are not given equal employment opportunities. For example, 1 in 4 people with Postural Orthostatic Tachycardia Syndrome are too unwell to work, and as many as 75% of people with Myalgic Encephalomyelitis are unable to work. These conditions are not a person's fault, and they are debilitating. Both of these conditions are often triggered by a simple virus, so anyone can be affected by them. No one plans to become chronically ill or disabled. In terms of the lack of employment opportunities, some employers just seem to believe that disabled employees are a “distraction”, a “liability”, or just “not worth the hassle”.
When people are outraged that disabled individuals receive the benefits that they need in order to live, it’s as if they don’t believe that disabled people are worthy of living and don’t care if we were to starve to death. This is a horrific attitude to have. Anyone can become disabled and it could be you one day. We are as worthy of surviving and getting the support we need as anybody else.
I do know that some people will say that too many people are milking the system, and whilst this may be true for a small percentage, we have no way of knowing for sure whether someone really needs the benefits or not as many conditions are invisible. Take Autism for example, many Autistic people don’t “look” Autistic. We can often mask our outward traits to appear neurotypical, but we will still struggle with internal issues such as feelings of being overwhelmed, anxiety about social situations, sensory overload, and exhaustion from socialising. According to the National Autistic Society, only 22% of Autistic adults in the UK are in any kind of employment. You may look at an Autistic person and think that there’s no reason why they shouldn’t be able to work as they look fine, but you do not see the internal struggle that prevents us from being able to interact with others and cope with the demands of daily life. You cannot tell if someone needs disability benefits or not just by looking at them, so it is wrong to make assumptions. Most people would not go through the PIP process unless they really had to, as it is stressful and tedious. Even severely disabled people sometimes get turned away so it is only a very small minority who are "playing the system." You cannot harm the entire disabled community just due to that minority. A person is more likely to be denied the benefits they need than to be given benefits they do not need.
To address the ableist comments that I have seen on social media, from people believing that disabled individuals hold less worth than them in society - our worth isn’t determined by our ability to work. There are many factors that give us worth in life, and work is just one of the possible factors. We are worthy because we bring our family and friends joy, we are worthy because we will always try to help someone in need, we are worthy because we may share our story online to help create a more inclusive society, we are worthy because we have so much knowledge and wisdom to share, and most importantly - we are worthy because we are human beings with feelings just like everyone else. Everyone deserves the support that they need to survive.
Some people think that disabled individuals just get paid to do nothing, but what a lot of people don’t realise is that being disabled itself is like a full-time job. We may spend the day waiting for severe symptom episodes to pass (which isn’t fun at all), seeing doctors, checking our vital readings, contacting healthcare professionals, researching things that may help, and following protocols to try to reduce our symptoms and distress. As well as this, some people get offended that money may go towards a disabled person having fun. We are allowed to have fun just like anyone else, and being unlucky enough to have developed health issues doesn’t mean that we shouldn’t be able to make the most out of life. People will say that you should work for those things, but it isn’t fair to expect a person who is unable to work due to a medical condition to never have any fun in life, especially as having medical issues makes life harder already.
I am personally very open about my experience on disability benefits as I know that no one should be ashamed of getting the help that they need. I have multiple disabilities - Autism, Tourette’s, OCD, and POTS. I receive a benefit called Personal Independence Payment which I use to buy groceries due to me being unable to work full-time, and I also use it to cover medical costs which aren’t covered by the NHS. I get just over £6000 a year to live off, over £2000 of that goes towards medical care. Compare this to the £33,000 average UK salary in 2022, it’s hardly glamorous, but I am grateful for all of the support that I get. There are other benefits that people can get when they are unable to work and need disability-related support, but still, they are unlikely to add up to more than the average UK salary. Living with a disability or medical problem also makes the cost of living more expensive, as we may need to purchase medical devices such as pulse oximeters and blood pressure monitors and we may need a specialised gluten-free or dairy-free diet which is more expensive than a typical diet. We may also need to pay for private healthcare due to the underfunding of the NHS, and we may need the heating on more than usual if we experience temperature dysregulation - thus raising our bills.
There are many ways in which my symptoms impact my ability to work. Having Tourette Syndrome means that I uncontrollably do and say things I don’t mean. When I did work from home on a typical schedule 2 days a week, the stress would cause me to fall to the ground and have a tic attack where I would be shaking and rolling around on the floor. I would also have tics where I would close my laptop whilst working on it, and uncontrollably click the page which led to important links being deleted. I struggle with feelings of weakness throughout my body due to chronic health problems, and this can make it hard to sit up for long periods of time. I also have episodes of weakness in my hands which can make it hard to type some days, and I get weak muscles behind my eyes leading to blurred vision and reading difficulties. When I had severe Obsessive Compulsive Disorder, I lost the ability to dress myself, and I wasn’t able to use a laptop properly as I would scroll up and down repeatedly and whack it on the floor. You cannot work from home with these types of issues, it just doesn’t work. I had years worth of psychological therapy which did nothing helpful.
As well as this, less employers are offering work-from-home opportunities since the lockdowns have ended. Us disabled individuals also often face discrimination when seeking work. One of my core memories is doing a school work placement at the age of 14, and being “fired” after two days because they couldn’t deal with my tics caused by my Tourette Syndrome anymore.
I do try to work as much as I can by publishing my writing, but sadly, my health issues prevent me from working on this as much as I would like. This means that I do not earn enough with my work alone, so need disability benefits in order to live. There are many people who are impacted much more than I am, similar to how I was affected when I was younger, who cannot work at all. These people still deserve support.
Staying at home all day and being unable to work isn’t as fun as people might think it is. Many of us struggle with feelings of worthlessness, shame, blame, boredom, and a sense of lost potential that greatly impacts our mental health. The fact that I’m not able to work full-time supporting Autistic people or people with mental health needs breaks my heart. I wish I could be like others my age - working and going to university, rather than just seeing the world pass by.
To conclude this, please don’t judge or look down on those who need to live off of benefits. It is a difficult situation to be in and it could affect anyone, even you one day.
