While recently discussing gender differences in a Human Development and Family Sciences course here at OSU, we read an interesting article about the struggles that come with asking for help, specifically the emotional effects. This article was written by someone who recently became disabled before writing the article, and shares their experiences on being disabled and having to ask for help constantly. Bula explains how she feels like a burden to many people, especially when needing extra help doing tasks around the house, and when people bring up how much work this is for her partners. Bula is discourage from getting a service dog by one of her partner’s friends, claiming the partner “Already had enough to do around the house.” While the intention of this comment was the help out Bula’s partner, this woman’s friend, it was very discouraging to Bula herself, who was simply trying to get the extra help she needed with her disability, in order to not have to ask as much out of her partner.
This concept of asking for help brings up a term used frequently in disability studies: access fatigue. Access fatigue can be broadly defined as the fatigue that comes from constantly having to explain one’s accessibility needs, disability, and having to ask for help to meet their needs. In the article, Bula mentions having to sit in a comfortable chair to do some tasks, or having to rest more in between chores or simply ask for more help on these chores in general. This constantly having to ask for help and having to explain why you need help with an everyday task that can sometimes be completed and sometimes not, creates a sense of debt you “owe” to those helping and accommodating your needs, leading to emotional labor.
Access fatigue can occur in physically disabled, mentally disabled, and even non-disabled individuals. Focusing more on the individuals with invisible disabilities, we can look at how this might be a problem. Personally, I have a genetic disorder that causes many different health conditions including breaking bones more easily, circulation issues that cause syncope, and chronic fatigue syndrome. While to most, I look like a “normal, able-bodied” person, these health conditions require me to need many more accommodations in life. Specifically in school, I need extended time on tests, extra note-taking assistance, and require snacks and water on me at all times to avoid passing out. While all these accommodations are already approved by the Office of Disability Services at Ohio State, every semester begins with me having to meet with each professor individually to explain my accommodations and discuss how we will use them for each specific class. While it is not technically required that I disclose why I have these needs, many professors tend to see me as “able-bodied” and like to inquire why I really need these. This leads to me having to explain my condition, each health issue, and how each leads to these different accommodations. After only 2 semesters so far at OSU, I am already tired of having to do this 5 times at the beginning of each semester, and I still have a long way to go.
This experience though is not just unique to me. There are thousands of other students registered with SLDS that have to do the same explanations for their unique circumstances. We have to do this, despite the fact that each professor receives an email stating the approval and details of our request from SLDS. Not only does this message also have to be given to the professor, but tp GTAs, UGTAs, Assistant Professors, and originally to SLDS to receive the accommodations. But the explanations of and need for accommodations doesn’t just apply to school and classes. It is common to have to explain why things have to be modified and done differently to family, friends, coaches, peers, partners/spouses, doctors. Pretty much everyone you interact with frequently.
We have to explain ourselves because “we don’t look like anything is wrong.” Even to doctors who have given diagnoses that explain some symptoms and needs, before there is an explanation, they believe the symptoms are all in the patient’s head. Until anything shows that something is medically wrong, you’re just crazy, wanting attention, wanting special treatment, are lazy; but nothing is actually wrong because the tests don’t show so. Having to sometimes see multiple doctors and reexplain every time, along with testimonials from family and friends, to prove something is wrong can be exhausting. The relief from finding an explanation is short-lived, and followed by the fatigue of now having to explain your diagnosis and the accommodations needed because of it.
Access fatigue takes a toll on you. Universal design is a hopeful light that could help eliminate this. If the world was already accommodating in a physical sense, but also in relation to time, many people would not have to ask for extra time on tests or tasks; would not have to ask for a comfortable chair over a hard one; would not have to explain their needs that the environment doesn’t provide. It would simply be there and these needs would be accommodtions, leaving more energy to do things, rather than it being taken away by having to explain accessibility needs.
The article mentioned in the beginning of this post can be found here: https://the-orbit.net/splainyouathing/2017/10/25/emotional-labour-asking-help/