This week, I’ve been struggling with my chronic pain because of the cold, which generally worsens my back pain. I’ve found myself unable to continue with my regular routines and I’ve had to commit to different exercises, stretches, and schedules in order to bring the pain back to a manageable level.
Even then, my pain has worsened in situations I can’t control as easily, such as being expected to stand for a long amount of time, and I found myself unable to voice my discomfort. This isn’t because of the people I was with, but just because it’s often difficult to stop entire conversations in order to explain why I’m not able to do what others are doing.
For example, when everyone else is having a conversation standing up, it feels rude to interrupt them to ask if we can sit down, so instead I find myself standing and forcing myself to endure the pain that comes with it. I feel that my explanation will sound random, or that it will take too long, or cause others discomfort, so it’s not worth bringing up. But, later I find myself in increased pain and full of regret at not having very simply voiced how I was feeling.
Before writing my column this week, I spoke to my friend, who has ADHD. She expressed similar feelings about the difficulty of trying to do the same things others were doing, especially before she realized she had ADHD.
She feels like she’s spent so much of her life accommodating others by trying to match how they behave. She described feeling a loss of identity after masking for so many years to accommodate others, and that she has difficulty understanding who she is because of the years she’s spent trying to change in order to match the majority.
We spoke about how though accommodations are often viewed as a favour to people with disabilities, we are the ones who have spent our whole lives whole lives accommodating the majority. The systems in place—for education, exams, work, social interactions, and so on—are designed to suit the majority, and by trying to follow them, many people with disabilities are working much harder, and experiencing pain and exhaustion. What accommodations actually do is attempt to prevent people with disabilities from having to put in this extra effort, rather than giving them something extra.
I asked my friend about exam adjustments in particular, and whether she feels like getting extra time on tests brings the test to the same level of difficulty as it is for others. She said that she couldn’t give a perfect answer to this question because she can’t imagine the experience of taking the test for someone without ADHD, but she did say that the format of tests still isn’t ideal for her. She said that extra time is necessary for her because it does take her longer to outline and write essays, for a variety of reasons, such as that even though she knows all the information she needs, she can sometimes forget the point she was trying to make halfway through an outline or a sentence. However, she said that she would perform best if questions were phrased differently in a way she found interesting, and she was able to demonstrate her knowledge in ways other than simply sitting down to write several essays in a row.
She said that systems of education and work are designed to be practical and efficient, which inherently means that the optimal performance of the majority is taken into account, but the needs and wants of the individual are ignored.
Individuality is so often dismissed in order to prioritize the overall productivity of society, and this means that no system can ever account for the needs of every individual. My friend acknowledged this, saying that changing the system to be optimal for her would mean that the system would be less ideal for others.
It may be true that it is impossible to create a system that works for every individual, but it is also very often true that people with disabilities are so much more aware of this. We work so much harder to accommodate the system, while people who belong to the majority that the system is ideal for can ignore its shortcomings.
Accommodations are still greatly helpful to people with disabilities, and I also find that when the people around us are aware of how much harder it is for us to participate in all the same activities as them, it is easier to ask for accommodations without feeling like we’re creating a problem.
This is really important because asking for accommodations is not creating a problem—it’s helping fix one. Despite knowing this, I feel so much hesitation explaining my needs to others, which is partly something I need to work on, but also because of how accommodations are viewed in wider society.
It’s still unclear to me what exactly the solution to this is, but I hope that in speaking to more people with disabilities, I can begin to find patterns of struggles and potential solutions.