Socially disabled: the fight disabled people face against loneliness and stress

Abstract

In 2018, the United Kingdom appointed its first Minister for Loneliness. This article discusses some of the barriers which may contribute to why disabled people were found to be one of the largest groups affected by loneliness. Utilizing ethnographic examples supported by facts, the article demonstrates how even when seeking to fight loneliness, and to reduce the stressors of everyday life, disabled people are often at a disadvantage, or excluded. The article raises questions concerning self-social exclusion and discusses recommended avenues for further research.

Keywords:

• Loneliness
• stress
• disability
• ethnography
• social inclusion
• health

Introduction

Many people in the United Kingdom seemed surprised to learn that loneliness is having a large detrimental effect on people’s lives (Geggel 2018). I believe this discovery was less shocking for those of us with significant disabilities. In fact, it seems to be one of the two main characteristics which accompany living with a disability in an inequitable society. The first is loneliness; the second, stress.

I hope that this newly discovered knowledge results in the necessary changes that will enhance the inclusion of those of us with disabilities into society, and that it leads to the removal of barriers which can prevent disabled people from getting involved in friendships, in social groups, and in social activities. That is the optimist in me. The pessimist in me, however, says that absolutely nothing will change; that the problems of loneliness and stress we face will simply be framed as a problem rooted in society, which is too big or too costly to conquer, and that it is just another consequence that we, as disabled people, will be commanded to accept.

From a monetary standpoint alone, ignoring disabled people’s loneliness and stressors makes no fiscal sense. Loneliness and stress have been shown to lead to a decrease in one’s health and to contribute to premature death. Addressing these issues should result in large cost savings for the National Health Service (NHS) and warrants special attention from both the NHS and academia.

The impact of stress and loneliness upon disabled people, as well as the lack of the ability to de-stress, has not been given due regard in the field of research. While research has clearly demonstrated the numerous social barriers that disabled people face, it has not focused enough attention upon the personal impact that these barriers have upon disabled people’s lives and identity. It is my hope that this brief ethnographic article highlights a few of the issues disabled people face when trying to participate in social activities, to de-stress, and to fight loneliness.

Stories from real life

‘Please don’t have to poop, please don’t have to poop, please don’t have to poop.’ This is my mantra on the bus from London to Liverpool. We are an hour into our trip. Prior to leaving it took the bus driver, and his assistant, over 15 minutes to re-teach themselves how to operate the straps that secured my wheelchair to the floor. The front seats have been removed and I have been locked down in the front of the bus. This is problematic. I am in the front of the bus, and the bathroom is at the end of a non-accessible aisle in the back of the bus. I am traveling with my then four-year-old son and I am praying he does not need to go to the bathroom as we travel, a small hope for such a long journey. Just in case I need to urinate I have brought a bottle for myself, and left my shame at home. However, I doubt that anyone is prepared to wipe the bottom of a stranger’s four-year-old child.

We chose to travel by bus, as flying has consistently resulted in my body being bruised, bloodied, and, at times, slightly broken. This is not turning out to be a less stressful option. As my stomach churns with nerves I look over at my son joyfully looking out the window and realize that this will not be an opportunity to relax. The causes of these stressors are not my son’s fault. They stem from a society whose complete lack of inclusion of disabled people into the design and implementation of items, services, and policies has led to this and other personal and social dilemmas.

Years ago, I would call and register a complaint every time something of this magnitude happened. Experience has taught me that at the conclusion of such efforts the only result would be me being frustrated further without any changes occurring. Too many times I have heard that a bad policy exists but no one knows who to talk to in order to change it, or that the accessibility I am requesting is too burdensome. Often, after I have called a company to report an issue, the company has blamed me for not being familiar with their policies or ‘how they operate.’ Actions that I am ashamed to say have resulted in me feeling that my impairment is somehow my fault (Williams et al. 2017) and as unwelcomed in social spaces. Sadly, this has led me to choose to travel less and to remove myself from numerous social activities. For myself, and I know for others, this can lead to isolation, depression, and loneliness.

Misinformation and attitude are not relegated only to the companies which provide services. Recently, when discussing this bus fiasco with a newly made friend, I was asked why I had not called ahead and asked about the accessibility of the bus prior to purchasing tickets. This reminded me of the lack of barriers that those without disabilities face on a daily basis, that they take accessibility for granted, and that it rests solely upon disabled people to not only fight to be included, but to educate those within our social circles about the barriers we face. Both of which can be very exhausting. I need to not only explain to friends the barrier, but why it is a problem, what physical impact it has on me, and, if they are emotionally close enough to me, the emotional impacts it has on me as well.

What makes this even more challenging is that it is hard to explain to those without disabilities the amorphous nature of the barriers that disabled people face, which can change from place to place, and situation to situation. Many non-disabled friends seem to believe that all that is required to join them at clubs, events, or restaurants is to call ahead and let the location know that a disabled person is coming and, no matter the disability, the problem is sorted. In reality, it takes so much more than this. The location may be completely inaccessible, the environment may not be conducive to easy communication, and the number of people you may need to speak with may completely preclude your participation. A personal example of this occurred when a deaf friend and I wanted to attend a concert together. I called the designated accessibility line. Here we were told that the only location where they could provide interpreting services was in a section which cost more than four times the cost of the tickets we had called to purchase, and that was inaccessible for wheelchairs. So, instead of spending that which we had budgeted for, we were being asked to spend much more, and to sit apart. After eight telephone calls, several emails, and my own explanation to the accessibility specialist about equality and disability rights, we were allowed to see the concert together and to pay the price for which we had budgeted. However, unlike those without disabilities, who can simply go online and snatch up discounted tickets for any event they wish to attend, it took me approximately six hours of work to attend one concert. I wish I could say this was a unique occurrence and was due to the unique situation of there being two of us with different disabilities. My lived experience tells me otherwise.

A majority of the time the tickets are more expensive, they must be booked through a burdensome process well in advance, and the option to join friends at the last minute is non-existent. When the effort is given to participate, the time and stress of trying to make these arrangements work can often result in a net increase in stress for the disabled person. An event that was to be a place to meet new people, blow off steam, and simply relax with friends has now become work, arguments, and stress. The result is that the person often gives up on attending these and other types of social activities. A pattern that continues and which, I believe, directly contributes to research from Scope.org.uk (2017) finding that almost half of working-age disabled people in the United Kingdom are chronically lonely.

Other avenues of fighting loneliness and stress are often blocked as well. Take, for example, exercise; exercise has been shown to be a great stress reliever and provides opportunities to participate in social activities and to join social groups. Yet research has shown that while society encourages people to be active and healthy, disabled people usually do not have equal access to social facilities (Oliver 1996). This can include access to things like accessible exercise facilities, trainers with knowledge of assisting disabled people, local sports teams, social fitness groups, appropriate equipment, and more. My personal experience bears this out. My son recently turned five years old. I was seeking a hobby that would provide us both with exercise, while also allowing us to spend time together. He recently acquired a more thorough interest in his bicycle, so I began to seek out the possibility of obtaining a handcycle. My first stop was one of the UK’s largest retailers of cycles. To my chagrin, they sold no form of accessible cycle, or handcycle. A thorough search of the ‘internet revealed that, due to my paralysis, the cheapest handcycle I could procure was more than eight times the cost that a non-disabled person would be expected to pay for a bicycle (£90 versus approximately £800). While I realize a handcycle is specialized equipment, charging such a large sum of money to a population who face massive unemployment, massive underemployment, and who have extra costs associated with having a disability (WHO 2011) creates a situation that is the antithesis of inclusion. These increased costs could be one of the reasons why disabled people are less likely to participate in sport in the United Kingdom than those without a disability (Papworthtrust.org.uk 2016).

Vacationing is another issue where an increase in costs and stressors comes into play. Many travel sites do not provide the option to obtain accessible hotel rooms online. This results in numerous calls to obtain accessible rooms, which are often not provided upon arrival. But this is just one barrier. Another is that most hotels will allow you to book either a family room or a disabled room. Rarely can you find a hotel that has a family room that is also accessible. The result is that disabled people are required to book a second room and to pay twice as much as others. In many locations, be they hotels or cruise liners, accessible rooms are often only available as superior or more expensive options – making them impossible for disabled people to afford.

Having a disability changes everything when it comes to fighting loneliness and stress. I am glad that the United Kingdom has appointed a Minister for Loneliness (BBC News 2018). But if they focus solely upon the very old or young, if they blame social media, or if it is deemed as simply a new emerging social structure, then remedying this dire situation will fail. If those of us with disabilities are once again non-participatory in driving this social change, it will be yet another missed opportunity to improve lives and to make them last longer. It will also be a missed opportunity to lessen the strain currently facing the NHS.

Policy-makers and politicians must recognize the extra costs, time, and effort required for disabled people to be included. As researchers, we need to find out more about why and when disabled people stop seeking social inclusion, stop seeking friendships, and accept loneliness and stress as a part of having a disability. Finally, policy-makers, politicians, academia, and disabled people need to work together to create a world where a father does not need to worry about how his son is going to go to the bathroom on a bus simply because that father uses a wheelchair.

Disclosure statement

No potential conflict of interest was reported by the author.