October 31, 2013
Response to Question 1:
I have a serious, progressive neuromuscular disability. For most of my life, doctors thought I had spinal muscular atrophy, but now there’s a DNA test for that and last year we learned that I don’t have the SMA gene. So now I have a generic neuromuscular disability labeled congenital myopathy.
I have friends with similar conditions, as well as friends with post-polio syndrome, many of whom use BiPAP machines at night to breathe. No doctor in my first 45+ years ever mentioned that I might one day need a BiPAP but, fortunately, my friends and I talked about these issues and I learned from them what to look for in terms of potential symptoms. When I noted a symptom and requested a sleep study, it revealed that I needed breathing support during REM sleep. I got my first BiPAP about twelve years ago.
I could never understand why I had to be the one to bring it up. Over the years, I lost three friends to acute respiratory failure who did not have the benefit of my friend’s knowledge and support. In two cases, their doctors gave them oxygen without mechanical breathing support, which is the wrong answer for people like us.
My current doctors include some with the relevant expertise in neuromuscular disabilities. I don’t think that the importance of specialty knowledge related to specific disabilities can be over-estimated. But the other quality that my current doctors have is a willingness to listen to me, talk with me, and engage in dialogue that takes my experience with managing my disability into account.
About two and a half years ago, I caught what I thought was a cold that turned out to be viral pneumonia. I started going into respiratory failure and my husband called 911. When the EMTs arrived, I was sitting in my wheelchair and using my BiPAP, but it was not enough to keep my oxygen level up. I later learned that, as the EMTs were taking me to the ambulance, out of my hearing, they asked my husband if I had a DNR. Something about they way they asked the question led him to not only say “no” but also to explain to them that I have a full time job. He felt that this changed their tone.
I was in the hospital for a week, but about a month later, had severe chest congestion that resulted in another 911 call. I received oxygen with my BiPAP while I coughed through the congestion and, several hours later, I was fine again. But when my chest x-ray was being discussed, one doctor questioned whether I would want to treat something that might be life threatening. He looked at me in my wheelchair with what I’m sure he viewed as sympathy for my condition and a genuine concern to be sure that he knew what I wanted. But I also felt sure that he wouldn’t have spoken that way to a non-disabled woman at age 58. I said, “I have a full time job,” and he essentially backed off, stopped talking and left.
That was when my husband told me about the EMT experience a month earlier. We both remarked that we had felt threatened by the medical professional’s tone and both brought up my job as a response. We also both felt regret about mentioning the job, as though whether someone has a job should determine how they are treated by medical professionals. Our professional careers include a fight against such oppressive attitudes. Yet we both felt that mentioning that I work full time changed the dynamic of the communication.
Shortly after these two experiences, I learned about and got a cough assist device and since then I have been able to manage respiratory congestion without resorting to emergency treatment.
But these experiences were a brush with the perhaps subtle forms of devaluation that medical professionals sometimes visit upon people with chronic, serious disabilities.
More blatant forms of discrimination are also common. Recently, I submitted public comments on the nondiscrimination regulations under the Affordable Care Act. These comments are available at http://notdeadyet.org/not-dead-yets-public-comment-to-u-s-dept-of-health-and-human-services-on-affordable-care-acts-nondiscrimination-regulations .
Response to Question 6:
Again, please see public comments on the nondiscrimination regulations under the Affordable Care Act. These comments are available at http://notdeadyet.org/not-dead-yets-public-comment-to-u-s-dept-of-health-and-human-services-on-affordable-care-acts-nondiscrimination-regulations .
In response to the assisted suicide advocacy submitted by certain groups to the IOM Committee, please note that leading national disability rights organizations oppose legalization of assisted suicide. More information on that is available at www.notdeadyet.org.
Finally, also, please see also comments and resources available through the Disability Rights Education and Defense Fund at http://dredf.org/healthcare/ and http://dredf.org/assisted_suicide/