Often when people think of living with a disability, they say things like ‘I can’t imagine it’ or ‘I couldn’t do it’ (also known as ‘I would kill myself’).
There’s a reason people who are able-bodied come to this conclusion. It’s because they only think about what can be measured. About what is lost.
My life is not the degrees my elbows and knees (and other joints) hyperextend. It is not the days I am not allowed to drive. It is not the weight limit on what I can lift. It is not the pills I take every day. It is not the tally of strains, sprains, dislocations, and subluxations. It is not the distance across the bruise on my shin, nor the size of the atrophic scars on my stomach.
My life is not the number of hours I walked around shopping today. It is not the count of rows I crochetted on the toy elephant I am making for my nephew. It is not how long it takes to get Hudson into his harness. It is not the number of minutes I spent curled up against my boyfriend’s chest.
Life is immeasurable. To try to reduce it to quantifiable things is to forget that life is in our experiences, in our emotions. If you count the minutes I spent playing with my service dog but do not count the laughter and the bonding, the joy of just goofing off together, you miss the core of what it is to play. The number of rows I crochet on the stuffed elephant for my nephew doesn’t tell you much, but that doesn’t tell you that I am making this elephant because last year, I made him a stuffed lion that is one of his favorite toys – yes, it’s a ridiculous amount of work, but there is a special kind of…of…I don’t know how to describe it, glow? to seeing someone who you love adoring something you made. Saying I spent time curled up with my boyfriend doesn’t tell you how loved that makes me feel.
My life is not a tragedy. Disability is not a tragedy. Perhaps you can’t imagine living my life, but keep this in mind – you can’t imagine it because it’s different, not because it’s terrible.