by Patty Estes
From the Editor: Patty Estes is a long-time member from the state of Maine. She has acted as the affiliate’s chief organizer, has served as its president, and has long been its guiding force and spiritual leader when it comes to matters of blindness and the philosophy of the National Federation of the Blind. One of her frustrations is that she has multiple sclerosis, and this sometimes limits her participation in the work she deeply enjoys.
Patty listened to Dr. Adrienne Asch at our 2013 convention in Orlando and was shocked to hear that our access to medical care and treatment when resources might be scarce was being discussed in the context of our quality of life. More shocking was the realization that participants in the discussion were people who often have no idea what it is like to be blind and who believe that they can judge our lives through the lens of moral philosophy rather than through observing us and asking us what value we place on our existence. Here is a note never intended to be an article, but so introspective and thought-provoking is it that I thought Monitor readers would benefit from Patty’s experiences and observations. It was written just before the convention of the National Federation of the Blind of Maine, where I was pleased to serve as our national representative. Here is Patty’s letter:
Oh my, Gary—Dr. Asch was right! I have been interviewed or cross-examined by one of those moral ethicists. I tell you, it is lots more chilling than just thinking about it.
I had an appointment with a neuropsychologist a couple of weeks ago for some limited testing. At the end of our time together, he asked me, "So, what do you do all day?" I must have looked like a deer in the headlights, so he repeated his question:
Dr.: “So, what do you do? I mean, what do you do with your day?”
Me: (I was reluctant to answer because his demeanor had shifted) “Okay, well, I do some housework....”
Dr.: (interrupting me) “No, really . . . what do you do? Do you just veg?”
Me: (This was stunning. Ok, he was a chauvinist and could not grasp the concept of keeping a home as a worthwhile activity.) “No, I do not veg all day.”
Dr.: (Apparently I still hadn't given him enough information.) “I mean—what is it that you do all day?”
Me: (Okay, so he specializes in MS—maybe he’s asking about that.) “Well, sometimes I need to rest when I don't want to.”
Dr.: “So, you do sit and vegetate all day!”
Me: (I really, really didn't want to play this game) “No, I do not `Just vegetate all day.’"
The doctor kept sputtering and blurting out the same question and his stupid conclusion, but I just sat and looked in his general direction. I was now done and wanted to go home.
I can tell you, Gary, that I could have spit nickels for several days. I was very, very upset. I had come to the conclusion that he was a chauvinist and had a disregard for the lifestyles (that's really too glamorous a word for my daily activities) of his MS patients or he was one of those bioethicists Dr. Asch spoke about at this past convention. Probably all of the above, but that last one was the kicker.
That's it! He wanted me to account for my productivity. He kept pushing me to offer a reason why I should take up space. Wow, words can't express how judgmental that is, how demeaning, and how furious it made me feel for days.
Then I decided he wasn't worth the energy I was giving him or the turmoil his question was causing in my life. Well, it finally occurred to me that perhaps he had just been quizzing me to see if I had strength and purpose. Perhaps this was a part of his testing protocol or his way of making me tough. I just couldn't know. I mean, he was so insistent and fidgety and loud, whereas, before he had been measured and kind. Well, I had a follow-up to go over the results. I would just ask him if that was part of my test, instead of automatically assuming the worst of him.
That follow-up appointment was yesterday. In the waning minutes of the visit, I referred to those questions he had asked me at the end of the previous session and directly asked him if they were a part of his test.
Dr.: "No, it wasn't part of the test. I was curious about what you do all day. Just sitting and vegetating is something we worry about with disabled people."
Me: “Oh really? Well, I don't do that.”
We left, and I have been stewing since then. On the basis of my very limited cooperation, he could easily have concluded that I might be one of those that "we" worry about. It is easy to see how then I would be one of those who wouldn't really require medical attention, given my MS, and then there is the blindness, and on top of that I am sixty! I can foresee my healthcare being severely rationed within a year or two—not sometime in the distant future—and all by people who haven’t a clue about how I feel and one whit of interest in giving me enough credibility to listen seriously to my side of the story.
Gary, the article you asked me to write about, "The Right to Live in the World," appeared in the Monitor one year ago. I focused on our rights and the template Dr. tenBroek and Dr. Jernigan built a movement upon. Apparently this other way of looking at the title of the treatise, "The Right to Live in the World" had already gotten its footing within academia. The literal reading with the emphasis on "live" rather than "right" has troubled me greatly. I could not have conceived of such a disgusting twist on this topic or our feeling its effects in our enlightened generation, and now having to rally on this new barricade! Except, it isn't really new. Only the titles of the actors have changed.
We will once again be taking on those who know much more than we do about our relationship to our blindness. We have no hope of ever scoring points in this debate, since they just “know,” and their presumed knowledge once again comes from professional titles—and this time academic degrees—that show they are very smart and accomplished but which convey nothing about their understanding of who we are, how we feel, and what we have to contribute.Gary, Dr. Adrienne Asch is so very right, and she is also correct to call upon the NFB to get prepared for this battle. Thank you for running her talk in the convention Monitor. Her delivery was wonderful—and chilling. Thank you for reading to this point and for listening, Gary. I am looking forward to our convention and to seeing you.