The Issue of Invisibility
Eleanor Parsons - Writer
From a young age, we are often asked which superpower we would like to have. Most say flying, super-speed or mind-reading. Some say invisibility. However, for those with invisible disabilities, this wish can soon become a nightmare. Through this article, I intend to give an insight into living with invisible illnesses as a young adult, through my own experience and from others around me.
Invisible (or hidden) disabilities are often a taboo subject - one of those areas which many people fear discussing, for fear that they too might ‘catch it'. Invisible disabilities can cover a wide range of areas, from mobility conditions and mental health conditions through to epilepsy and many others. There are 13.3 million people registered with a disability in the UK, accounting for nearly 1 in 5 of the population. Far more people will suffer from a hidden disability than one which is physically apparent, but yet those who do are largely ignored within society.
This is especially an issue for young people, whom the general public often perceive as fit and healthy individuals, with generally no physical ailments, unless self inflicted from hangovers or sporting injuries. Anyone who shies away from physical activity at a young age can often be labelled as disinterested or lazy by those around them. Ironically, supported physical activity for those with hidden disabilities can be one of the key areas that can assist rehabilitation or physical improvement, but often children are put off at school age. They then remain sceptical of the benefits of exercise for the rest of their lives, due to poor childhood experiences.
At a young age, children often struggle to be heard. If they complain of pain or unexplained illness, these potential symptoms can often be brushed aside as ‘growing pains’ or being anxious and shy. Children are unable to make decisions about their own care. Adult identification and intervention is required for the opportunity of a diagnosis to be made in the first place. However, if a condition is invisible, this is not always possible, leaving children in pain or without treatment until later in life.
Whilst talk of inclusivity and equality is rife, the physical provision of accessibility often fails to materialise. Young people are berated in the press and by wider society for being rude, lazy or ignorant. Combine this stereotype with a seemingly healthy and well teenager taking up the last seat on the bus, and you can imagine the palpable tension of such a situation. Individuals in these scenarios often put their own health and wellbeing at risk in order to avoid social stigma, as seen in a recent piece in the Guardian. This piece gives a first hand account of the writer’s experience of living with Osteoporosis and fatigue. Due to her young age, the writer found that social stigma was preventing her from using the accessibility measures that could have helped her in every day public life, such as designated seats for those with disabilities on trains. Until more people understand the impact of invisible illness, this common situation is unlikely to change.
To give some further examples, during adolescence, some may wish to attend festivals and gigs. Applying for accessibility support in order to attend these events can be likened to attempting to break into Fort Knox in some situations. Upon arriving at events, it can often be found that accessibility support put in place has been an afterthought of small proportions, often unsuitable, demeaning or entirely irrelevant to the individuals disability. This does not improve accessibility. Events that should be defining memories in a young person’s life can become ones of defining difference and disappointment. Often after experiencing or realising the reality of accessibility support at events, young people may feel too scared to attempt attending them in the first place.
If a young person decides to go to university, accessibility can be better supported to some extent, as young people become recognised as adults, and other adults are willing to now discuss the challenges of which they may be facing. Provided by Student Finance England or Student Finance Wales, ‘Disabled Students Allowance’ offers financial and practical support to any qualifying student, which is tailored to the needs of that individual. This can help to promote inclusion and increase accessibility to Higher Education. However, if an individual has grown up hiding their illness, they may not identify with the label ‘disabled’ in the first place. As a result, many students with such conditions may miss out on the help set aside for them. There is little to no wider public awareness about this funding.
Invisible (or hidden) disabilities are often a taboo subject - one of those areas which many people fear discussing, for fear that they too might ‘catch it'. Invisible disabilities can cover a wide range of areas, from mobility conditions and mental health conditions through to epilepsy and many others. There are 13.3 million people registered with a disability in the UK, accounting for nearly 1 in 5 of the population. Far more people will suffer from a hidden disability than one which is physically apparent, but yet those who do are largely ignored within society.
This is especially an issue for young people, whom the general public often perceive as fit and healthy individuals, with generally no physical ailments, unless self inflicted from hangovers or sporting injuries. Anyone who shies away from physical activity at a young age can often be labelled as disinterested or lazy by those around them. Ironically, supported physical activity for those with hidden disabilities can be one of the key areas that can assist rehabilitation or physical improvement, but often children are put off at school age. They then remain sceptical of the benefits of exercise for the rest of their lives, due to poor childhood experiences.
At a young age, children often struggle to be heard. If they complain of pain or unexplained illness, these potential symptoms can often be brushed aside as ‘growing pains’ or being anxious and shy. Children are unable to make decisions about their own care. Adult identification and intervention is required for the opportunity of a diagnosis to be made in the first place. However, if a condition is invisible, this is not always possible, leaving children in pain or without treatment until later in life.
Whilst talk of inclusivity and equality is rife, the physical provision of accessibility often fails to materialise. Young people are berated in the press and by wider society for being rude, lazy or ignorant. Combine this stereotype with a seemingly healthy and well teenager taking up the last seat on the bus, and you can imagine the palpable tension of such a situation. Individuals in these scenarios often put their own health and wellbeing at risk in order to avoid social stigma, as seen in a recent piece in the Guardian. This piece gives a first hand account of the writer’s experience of living with Osteoporosis and fatigue. Due to her young age, the writer found that social stigma was preventing her from using the accessibility measures that could have helped her in every day public life, such as designated seats for those with disabilities on trains. Until more people understand the impact of invisible illness, this common situation is unlikely to change.
To give some further examples, during adolescence, some may wish to attend festivals and gigs. Applying for accessibility support in order to attend these events can be likened to attempting to break into Fort Knox in some situations. Upon arriving at events, it can often be found that accessibility support put in place has been an afterthought of small proportions, often unsuitable, demeaning or entirely irrelevant to the individuals disability. This does not improve accessibility. Events that should be defining memories in a young person’s life can become ones of defining difference and disappointment. Often after experiencing or realising the reality of accessibility support at events, young people may feel too scared to attempt attending them in the first place.
If a young person decides to go to university, accessibility can be better supported to some extent, as young people become recognised as adults, and other adults are willing to now discuss the challenges of which they may be facing. Provided by Student Finance England or Student Finance Wales, ‘Disabled Students Allowance’ offers financial and practical support to any qualifying student, which is tailored to the needs of that individual. This can help to promote inclusion and increase accessibility to Higher Education. However, if an individual has grown up hiding their illness, they may not identify with the label ‘disabled’ in the first place. As a result, many students with such conditions may miss out on the help set aside for them. There is little to no wider public awareness about this funding.
In other areas, ‘uni culture’ does not allow for hidden disabilities in every area of a student’s life. With many students enjoying nights out at their local club or Student’s Union, the concept of disability falls out of many people’s minds once a drink is poured and UV lights are turned on. From lengthy and claustrophobic standing queues, to unsympathetic door staff, students with hidden disabilities can feel more vulnerable and different to their peers at these times when compared to any other. Whilst university certainly isn’t all about the nights out, if this is where many friendships are made and maintained, it can be hard to miss out or be unable to take part in the first place, as a student with an invisible disability.
To suggest solutions is the challenging part. The issue of invisibility is just that - whilst those with the conditions are constantly acutely aware of their challenges, those around them cannot see and may not know. This is often the hardest part of living with such a condition, due to the isolation that comes as a result. Education would be a start, taking the taboo out of illness in whatever way possible. An awareness of hidden conditions, the difficulties these can cause in everyday life, and how symptoms may present, could allow for greater understanding across the population.
More specific practical solutions could be seen in the form of concessionary travel for those with mobility issues. This already exists in some format for some conditions, but often stops just short of those with hidden disabilities. Scope research has shown that the cost of living can be £570 more a month for someone with a disability. If you consider this compared to minimum wage, or the circumstances of someone in full time education, the financial pressure this adds to an individual’s life is obvious.
Moving away from financial support, simple changes can be just as powerful. For many, being listened to without facing judgement or being patronised can be a turning point for many individuals with hidden disabilities. Whilst the disability might not be obvious, some signs may be, and acting on these with good intentions as a boss, friend, teacher or family member can allow for positive change. It is not about giving sympathy, but instead about empowerment. Giving someone with a hidden condition the choice not to require help is just as valuable as offering to make reasonable adjustments in some cases.
If change is needed or requested, small changes can make a big difference. Slowing your pace if you notice a friend or colleague is consistently struggling to keep up. Consideration when booking meeting venues at work, or cross campus travel in education. Not using disabled facilities as storage sites just because it is assumed they are not obviously required, or judging those who use them without physically obvious conditions. These are quick and easy changes, but are so often overlooked or not considered in the first place.
Reasonable adjustments are thankfully becoming more commonplace within education and the workplace. As mentioned, these can only be accessed if individuals feel confident enough to disclose their conditions in the first place. Whilst it is likely that someone you know has a hidden condition, that doesn’t mean they have to be treated as invisible themselves. Solutions could be implemented across society by increased awareness, further education and an acceptance that invisibility might not be the dream we once thought it to be.
Sources
https://www.theguardian.com/commentisfree/2019/aug/09/disabilities-invisible-prove-stangers-disabled-services-illnesses
https://www.highspeedtraining.co.uk/hub/invisible-disabilities-in-the-workplace/
https://www.disabled-world.com/disability/types/invisible/invisibility.php
https://www.scope.org.uk/media/disability-facts-figures/
https://www.gov.uk/disabled-students-allowances-dsas
Photo Credit- https://unsplash.com/photos/UudGNHJdNSo
To suggest solutions is the challenging part. The issue of invisibility is just that - whilst those with the conditions are constantly acutely aware of their challenges, those around them cannot see and may not know. This is often the hardest part of living with such a condition, due to the isolation that comes as a result. Education would be a start, taking the taboo out of illness in whatever way possible. An awareness of hidden conditions, the difficulties these can cause in everyday life, and how symptoms may present, could allow for greater understanding across the population.
More specific practical solutions could be seen in the form of concessionary travel for those with mobility issues. This already exists in some format for some conditions, but often stops just short of those with hidden disabilities. Scope research has shown that the cost of living can be £570 more a month for someone with a disability. If you consider this compared to minimum wage, or the circumstances of someone in full time education, the financial pressure this adds to an individual’s life is obvious.
Moving away from financial support, simple changes can be just as powerful. For many, being listened to without facing judgement or being patronised can be a turning point for many individuals with hidden disabilities. Whilst the disability might not be obvious, some signs may be, and acting on these with good intentions as a boss, friend, teacher or family member can allow for positive change. It is not about giving sympathy, but instead about empowerment. Giving someone with a hidden condition the choice not to require help is just as valuable as offering to make reasonable adjustments in some cases.
If change is needed or requested, small changes can make a big difference. Slowing your pace if you notice a friend or colleague is consistently struggling to keep up. Consideration when booking meeting venues at work, or cross campus travel in education. Not using disabled facilities as storage sites just because it is assumed they are not obviously required, or judging those who use them without physically obvious conditions. These are quick and easy changes, but are so often overlooked or not considered in the first place.
Reasonable adjustments are thankfully becoming more commonplace within education and the workplace. As mentioned, these can only be accessed if individuals feel confident enough to disclose their conditions in the first place. Whilst it is likely that someone you know has a hidden condition, that doesn’t mean they have to be treated as invisible themselves. Solutions could be implemented across society by increased awareness, further education and an acceptance that invisibility might not be the dream we once thought it to be.
Sources
https://www.theguardian.com/commentisfree/2019/aug/09/disabilities-invisible-prove-stangers-disabled-services-illnesses
https://www.highspeedtraining.co.uk/hub/invisible-disabilities-in-the-workplace/
https://www.disabled-world.com/disability/types/invisible/invisibility.php
https://www.scope.org.uk/media/disability-facts-figures/
https://www.gov.uk/disabled-students-allowances-dsas
Photo Credit- https://unsplash.com/photos/UudGNHJdNSo
Comments
Post a Comment