Updated: Jul 23, 2020
I struggle with labels because they feel restrictive on my identity.
When it comes to disability however, the term is directly necessary for a variety of reasons, the largest one in my experience is accommodation.
I don’t look disabled, and frankly, my level of ability fluctuates between high and low functioning frequently, so I constantly feel at odds with identifying with disability depending on the day.
So, I turn to the definition of disability. The ADA defines a person as disabled if they have a physical or mental impairment that substantially limits one or more major life activity or major bodily function.
What is a major life activity or major bodily function? The activity list includes (but is not limited to), caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working. The body function list includes (but is not limited to), functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.
So yes, I am classified as disabled across both lists in varying degrees. But why does this matter?
It matters because if a restaurant disregards my allergy list the glands in my throat/mouth swell. It matters because if an employer isn’t aware of my physical limitations I will lose my job, and I might lose it anyway even if they know. It matters because if I am in the hospital and my conditions make it difficult to communicate, I may not get the care I need, or I may not be able to eat if they don’t provide the food substitutions I need.
I live a modified life from a non-disabled person, and those modifications allow me to maximize my ability and quality of life. Unfortunately when I leave my front door, those accommodations are frequently looked down upon, dismissed, questioned, and ignored. Without daily lifestyle modification I am sick in the hospital or bed bound, as I have learned through years of struggling to lead a “normal” life.
To me, being disabled doesn’t mean I live a limited life. In my experience it is a different life that does not always align with societal standards and ideas of how life should be. Why is it important to me? Because everything in my life, from food to relationships, job opportunities and medical care, is seen through the lens of managing health.