Nick Dupree is a blogger and artist who happens to love bunnies (we love bunnies too at the DVP). From his website he describes himself:
I’m Nick, a 32 year-old disability rights and Medicaid reform activist, who has been advocating for ending the institutional bias and other long-term care reforms for years. I fight especially hard for awareness and action on issues that affect those of us who, like me, have complex care needs and are vent-dependent. We are a vulnerable population that spans multiple diagnoses and every age group, and, in order to stay in our homes and communities, we need change in long-term care.
As someone who lived in an institution called Coler-Goldwater because of his disability-related needs, Nick recently posted a collection of stories about his past experience. FYI, Nick now lives in the community.
Here is an excerpt from a blog post originally written on March 24, 2009:
“That’s Not My Job” (Angry Rant)
For people with severe disabilities like me, you’re paradoxically only as independent (defined here as self-directing, in control of your own daily existence) as the people you’re depending on enable you to be. As I wrote in my last post, if your caregivers are responsive and willing and able to support all your needs, your disability becomes a minor, almost social/cultural difference. If you don’t have good supports, that same person may end up with repeated illness, lying helplessly on their back. This is why being in the hospital and repeatedly running head-first into “that’s not my job” can have such a tremendous impact. It really is one of the worst things about hospitalization.
“That’s not my job.” For me, right now these are some of the most hated words in the English language. But hospitals, whether here in New York City or back in Alabama, seem to encourage them with their strict, stifling policies. I like the people, it isn’t their fault. It’s policy.
In the home, I had one nurse at a time, and she’d do everything I needed. Simple. I got used to that. Here, even charge nurse RNs aren’t allowed to change the humidifier water bag, even though it’s essentially identical to the IV bags they could hang in their sleep, except easier. They can’t swap a water bag, because that is Sterile Water for Inhalation®, and though exactly identical to the sterile water nurses use for other things—wound care and so on—anything involving ventilation is the purview of Respiratory. And since there are only two respiratory therapists for the North Campus, your lungs may dry out and form tumbleweeds before they get to it. It’s all fun and games until a tumbleweed blocks someone’s airway.
For the entire blog post: http://www.nickscrusade.org/249/
To read the entire collection from his time at Coler-Goldwater: http://www.nickscrusade.org/coler-chronicles-collected-bloggings-of-institutionalization/
For more about Nick Dupree: http://www.nickscrusade.org/about/
Do you have a blog post you’d like to share with the Disability Visibility Project? Would you like to write a guest post for us? Email Alice: