One of the things that I’m now doing a lot of in my job lately is asking questions about health, safety, and risk. What kind of obligation does a state entity have to monitor the health and safety of a person with a disability who is self-directing their own care? How does a state agency establish consistent standards of assessing threats to health and safety? More importantly, how does a bureaucracy balance its monitoring responsibilities with a basic respect for the dignity of risk?
It’s during discussions like these, when I’m often the only person with a visible disability in the room, that I feel deeply conflicted. As a human services agency, we are accountable to at least some degree for the well-being of the people we serve. But as someone who is served by that same agency, I know that I would resent any attempts to judge the amount of risk I can safely accommodate in my life. Was it exceedingly risky for me to go to Europe? To have a friend pour wine down my g-tube? To be left in the care of my siblings (one of whom used to love grabbing my hand and bringing it into contact with my face while admonishing me to stop hitting myself)? Is my objective tolerance for risk lower simply because I’m closer to life’s precipice?
Self-direction is not just about hiring your own attendants and getting to decide when to eat dinner. It’s about shaping the course of your life, even if that course sometimes veers uncomfortably close to the jagged edges.
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Wow. I’ve never seen it stated so well. You should really expand this to a fullfledged op-ed – I think this is one of the hardest things for most people to get their heads around regarding disabled folks.