People with disabilities often face barriers that might seem trivial at a high level, but quickly add up over time. In this article, I will focus on the concept of spoon theory and how it relates to these barriers and overall mental health. I will address general societal attitudes as well as their implications, and a few proposed solutions in a following article.
Spoon theory gives someone the tools to describe how much physical and/or mental energy they might have at a given moment to devote to tasks. At the start of a given day, you might begin with a set amount of spoons depending on multiple factors: mental health, physical health, current events, stress levels, and so many more. As a person either completes individual tasks or encounters unexpected events, spoons can be subtracted from the starting amount to explain how much remaining mental or physical energy someone might have for the rest of the day. Ideally, an individual could complete their day and have a few spoons remaining to accomplish something they find fun and relaxing, such as reading a book, or watching a show.
I’ve eluded to the idea that mental health plays a large role in how many spoons you might have on each day. While there are many more diagnoses that can be used here, I am intimately familiar with persistent depressive disorder and will discuss it in relation to my own experiences, spoon theory and how it applies. Please do note that these are only my experiences, and do not apply to everyone who might also experience my diagnosis, or who might be blind or disabled. It’s important to note also that many of these factors work together, and while someone may not have the same set of circumstances I can speak to, they will have other factors that apply to their own experiences and day.
I will skip the long-winded psychological explanation of depression and explain specifically how it manifests for me. The severity of my own depression has many triggers, most of which I do not personally understand. Medication can and does help, but my spoons do differ from day to day. Depression for me can be described as lethargy, apathy and disinterest, along with heightened senses of anxiety and fear. This ultimately means that while I mentally do want to get up and work, take care of my house, walk with my dog, play music, read books and so many other things, I sometimes am physically unable to do so. The thought of doing something apart from what I have to (and even that sometimes is not possible) is like talking myself into climbing a mountain. I do not have the words to describe what it feels like to convince yourself that you should eat, despite feeling and knowing you are hungry, and having to exert a momentous effort to eat a meal. Sometimes this manifests in not eating, because I simply can’t make it.
This study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7721280/#:~:text=Depression%20in%20Visually%20Impaired%20Populations&text=In%20one%20study%20of%20adults,of%20people%20without%20acuity%20impairment shows that approximately 6.8% of people without a visual impairment suffer depression, while 10.8% of those surveyed diagnosed with a visual impairment (but not totally blind) note significant depression. It is worth note that the study mentioned excludes those who are totally blind, which would bolster this number significantly. These statistics show that there are far more blind people struggling with mental health, and that this is bound to impact the number of available spoons daily. My feeling from my own therapy and work is that this depression is likely greatly impacted by lack of daily accessibility.
When I speak of accessibility, I’m talking about an individual’s ability to consume and/or interact with information and technology in their daily lives. Blind users are able to employ programs called screen-readers, which are either built-in to some devices such as those made by Apple, or able to be installed from a third-party. These convert the text on the screen to speech, and provides a way for a blind user to navigate via keyboard commands.
For me, lack of accessibility is integral to so many parts of my life; it dictates how I plan my day, what I can choose to do, and most importantly how much I can accomplish. For example, on the day that I wrote this article, I encountered numerous issues. After waking up I attempted to order breakfast before work so that I could eat, which was hampered by multiple issues with the screen-reader built into my iPhone and the way that it was interacting with Uber Eats. While this does not always occur, it does happen on occasion and it extended the time that it would take me to order breakfast by an extra 15 minutes or so until I managed to work around the issues and get everything I needed. Later, I attempted to turn on a book on Audible while I took my dog out. It took me a bit to remember that the home tab in Audible’s app is not accessible, because it only shows a timestamp and not the title of the book for each selection. This makes it impossible for me to know which book I’m selecting if it’s not the last book I listened to. Finally, I spent over 3 hours on the phone with a tech support agent at Sweetwater to attempt to configure an audio interface, which would have enabled me to work on a music project I’ve wanted to do for some time now. I have to work directly with Sweetwater because the application for setting up this device is not even slightly accessible on Mac or Windows; as a result, I have to try to explain my needs to a tech support agent, let them change the settings they feel need changing and then test and call back again with a new set of issues for another agent to fix. There is no easy workaround for this that I can think of; I have spent a lot of time researching alternative access methods. Further, the company’s support website is impossible for me to use to request support, which locks me out of even speaking to a support agent about the specific device.
Before I explain why all of these issues matter, I also want to note that I have been using my screen reader for well over 15 years now. My background is in accessibility and software development, which does not mean I know everything, but it does mean that I have spent more time than I can account for in finding workarounds, tips and tricks and otherwise creatively solving problems so that I can move on to my next task or item for the day. For most of my accessibility issues, it is safe to say that it would take someone who is less skilled with technology much longer, if not make it impossible for them to complete a task. As a blind individual, it often falls on us to know our technology or other skills better than we truly should have to, to communicate (often to someone on the other end of the line who will have a hard time understanding) our issue when we do ask for help, and then to work with various ideas to solve a problem. Sometimes—especially in my Sweetwater case, this also means spending our own money on services that enable a blind person to work with a somewhat trained agent to either remote into a computer or to look at something through use of a phone’s camera, and then explain what they see.
I want you, assuming you haven’t experienced these before to take a few minutes to stop and think how the interruption of trivial tasks to your daily processes would impact you. Imagine that you suddenly opened an app that you were always able to use to find that the buttons were broken and didn’t work, or that you couldn’t interact with it. Imagine that you had spent any amount of money on a device, received it, set it up and then sat down to use the device to find out that you were not only locked out of using the device you had spent your own money on, but that you couldn’t even get support. Imagine that you have to rely on others many times to accomplish tasks that you could otherwise accomplish, and what that might feel like.
All of these issues are something that an average blind person needs to plan and account for. I always have a dread of trying new technologies or devices because it’s generally safe to assume that it will not be accessible, and this impacts all facets of my life. I do not wish to provide endless stories or explanations, nor do I want sympathy from this type of article. I mostly hope for understanding.
In the next article, I will discuss external responses to accessibility, and what all of us can individually do to make life better for everyone.