What was my biggest obstacle?
My response here concentrates on my biggest obstacle to achieving the goal for which I had pursued medical training: helping people. In my original, perhaps naive view, that involved direct, hands-on contact with patients. I never attained that goal, because I never completed post-graduate medical training and therefore never became licensed to practice. The sole obstacle there was my diagnosis with multiple sclerosis (MS) during my first semester at Harvard Medical School.
This was years before the 1990 Americans with Disabilities Act, and from early on, I received frequent hints that my medical career was in jeopardy. Confronting the physical limitations and uncertainly of MS was only one step. I also had to deal with people's reactions to methe "me" they equated with my disease. At that time, Harvard Medical School was a tough place to absorb these lessons. From four years at medical school, I left with one overwhelming lesson: never, ever talk about "it," the MS! It can't be cured, so don't mention it. For fifteen years, I almost never did.
How do I make a difference?
As noted earlier, my initial view was that I could only make a difference working with individual patients. But life had taken one of its ironic turns. I had left HSPH intending to become a practicing physician; because of the MS, I left medical school returning to the activities for which I was trained in HSPH. That's how things go. I often felt it was better that MS had happened to me than to one of my classmates who had prepared for a medical career since an early age. At least my HSPH education gave me options. Now I hoped to make a difference at that more global level. My research focuses primarily on two themes: methods to measure quality of care, and ways to improve fairness of payment. I have also participated in designing the method now used to set capitation payment rates for Medicare managed care organizations, with the goal of encouraging plans to enroll disabled patients and those with chronic illness.
More recently, I have conducted research about disability. Over time, I came to realize that silence carries consequences. For instance, I could have spared my caring colleagues their fears about my health when I purchased my scooter wheelchair if I had told them why I had bought it and how the restoration of mobility thrilled me. Silence reinforces the stigmatization of disabling conditions, the sense of shame and guilt that becoming less able to walk is something to hide, although of course, we can't.
Most importantly, strangers began asking my advice. In my scooter wheelchair, I have become a sort of "rolling focus group," attracting unsolicited questions from strangers about themselves, and their relatives and their difficulties walking. They describe bad knees, bad backs, heart and lung problems, and many other complications slowing them down. They want advice about restoring mobility or compensating for its loss. The research and writing I do on this topic addresses both primary care doctors and the general community. My colleagues now sometimes ask my advice about their patients with mobility problems and other disabling conditions. I am trying to break down the barriers people with disabilities face within our health care system and communities.
Who was my mentor?
First, during my job right after medical school, I met two wonderful colleagues with whom I have worked ever since: Arlene Ash and Michael Schwartz. Even though we are now at different institutions, we formed a tight little multidisciplinary team. I could never have accomplished what I have without them.
Second, at certain key points, individuals have provided invaluable assistance, even if fleetingly. For example, while looking for post-medical school jobs, two incidents solidified fears that my careerany careerwas in jeopardy. One potential employer, an academic researcher, asserted, "Even if you work full-time, we wouldn't give you a full-time salary. Full-time here is eighty hours per week, and I'm sure you'd only work forty hours. So we'll pay you half a salary." A second possible employer, a medical educator, mused aloud, "I see three options: I could hire you because I feel sorry for you; or I could not hire you because I don't want to deal with your disease; or I could try pretending you're not sick and look at your qualifications." I rejected his job offer. Finally, the former dean of the Harvard School of Public Health stepped in and pulled a few strings. With his generous recommendation and assurances, Boston University hired me for a research job which, over the next six years, offered many opportunities.
Finally, in my current position, I have had division chiefs and department chairs that have truly been my advocates. Although they have not provided a mentoring role (e.g. sitting down explicitly to discuss my career) they have recognized what I have accomplished and worked to ensure that I attain the academic and other benefits from those accomplishments. My now-former division chief, in particular, ensured that my physical surroundings accommodated my disability.
How has my career evolved over time?
Oddly enough (and stated with acknowledged irony), perhaps because of my disability, I did not have the "distractions" other people face to build a career (e.g. a young and growing family, active leisure-time activities). I spend much of my time working, which for me means writing and thinkingboth activities I tremendously enjoy. Although my career was non-traditional, I therefore have met many of the more traditional measures of success.