I’m disabled. Iidentifyashaving a disability. Someone else says I’m disabled. Do Ihave a disability? I’m a family caregiver of someone with a disability. Do I have lived experience? What does all this mean? This week I found myself in several conversations about disability. One was with a person newly diagnosed with a chronic condition facing a significant impact on his life who feared he was now disabled. Another conversation was about what constituted lived experience – frequent hospitalizations, a family caregiver, a person in recovery, a person with a physical disability who remains highly functioning, someone dependent on others for many activities of daily living? The population is aging. The longer one lives the more likely they are tohave a disability. Sometimes two people have the same challenges in function – one identifies as disabled, the other doesn’t. One town considers only limitations in locomotion as a disability, others include other challenges.
So what? Why should we care about this labeling? I have multiple sclerosis. It affects my mobility, my stamina, my vision, and going to the bathroom. Yet, I work full-time, play my saxophone, do chores at home. My family thought that labeling myself publicly as disabled affected my ability to get a job. It took some soul searching to check the box for the first time self-identifying as disabled. It was hard to accept my physician’s insistence that I get a disabled parking placard. Sometimes my family cares for me when I can’t do something because of my MS. They insist they are my family, my partner, not a caregiver. The Disability Commission in my town focuses only on mobility challenges. Some physician practices would rather not treat persons with complex behavior and medical needs. This labeling thing runs deep.
So there’s personal implications – self-image, others’ images, stereotyping, prejudice, benefits, ability to find work, independent decision-making, financial stability, community engagement, medical care. These personal implications have policy implications – physical access, financial access, medical access.
I’m fascinated by the human tendency to want to label. Labeling often leads to patterns of interaction, access to benefits and services. Or it limits interaction, benefits, services, possibilities, and choice. No words of wisdom from me about this labeling. Just be mindful.