I’ve come across a few chronic illness themed articles recently that I found so thought provoking that I’d like to share them with you. All of them focus on chronic illness.
A Marf whom I admire, Angela, introduced me to this first article. Unspeakable Conversations was written by a severely disabled lawyer, Harriet McBryde Johnson. In it, the passionate disability rights activist discusses her debates with Prof. Peter Singer, a Princeton philosopher who advocates infanticide (among other things). The heart of their disagreements comes from the question of whether those with disabilities are inherently worse-off than able-bodied people.
I’ve said many times that I wouldn’t have wanted my parents to choose not to have me just because I have Marfan. But, does having Marfan make me worse-off? In some ways, I suppose that it does. I have pain that my able-bodied friends do not. I’ve been discriminated against (especially in graduate school!) based on my “disability” status. I don’t have some of the options for pregnancy/birthing/babywearing that other women have. However, I’ve had lots of opportunities that many of my friends haven’t: the chance to travel to two other countries, presenting research, completing a Masters degree, having a baby, etc. This comparison didn’t help me answer the question at hand, as it left me with an unclear answer.
I decided to remove Marfan and insert other things about me to see if the negatives still held true. Does being biracial/LDS/female sometimes make me worse-off? Have I ever been discriminated against for these things? Has anyone ever made an unfair assumption about me based on these traits? Have any of them affected my ability to make choices? I would answer yes, but I don’t think most people would say that I am worse-off for being any of those things (at least not in a “you’d be better off dead” sort of way). Therefore, I don’t think I’m worse off for having a chronic illness.
The second article is actually a website: Choices that Matter. The author, Ellen Painter Dollar, has another connective tissue disorder – osteogenesis imperfecta – as does her daughter. Her blog examines “ethics and theology of assisted reproduction and genetic screening,” as well as living with her disability.
What do you think about these articles? Do you agree with any of them? Why or why not?