[usPropHeader] Error loading user control: The file '/CMSWebParts/WK.HLRP/LNC/LNCProductHeader.ascx' does not exist.

Authors

  1. YOUNG-MASON, JEANINE EdD, RN, CS, FAAN

Article Content

Allan Macurdy, a staunch disability rights advocate and a School of Law visiting associate professor, died on Monday, June 23, 2008, after a lengthy battle with muscular dystrophy. He was 47 years old. Attorney Macurdy defied medical odds by living for more than 20 years on a ventilator. He managed the Office of Disability Services at Boston University where he was responsible for disability policy and monitored and promoted the university's efforts to ensure full and equal access to curricula, employment, facilities, events, and services. He also taught Conflict of Laws, Admiralty and Maritime Law, Federal Indian Law, and Legal Rights of Individuals With Disabilities at the School of Law. He published and lectured widely on constitutional law, civil rights enforcement, individual liberties, federal jurisdiction, and law and disability. He was a board member of the Franciscan Children's Hospital, a founding board member of Partners for Youth With Disabilities, a past president and board member of the Disability Law Center Boston, and a member of the Massachusetts Bar Association.1

 

In 1999, he was awarded a fellowship by the Petra Foundation, which yearly honors individuals making distinctive contributions to the rights, autonomy, and dignity of others.

 

He was happily married for 16 years to Marie Trottier, Harvard University Disability Coordinator and Compliance Officer. Interviewed by the Boston Globe in 1999 about his personal and professional life, he stated with emphasis:

 

I don't think of myself first as a disabled person; I'd probably say an attorney. I had a very happy childhood. I have a happy life. The fact that few people can see that probably says more about what's wrong with the way we, as a society, look at ourselves than it is any indication of what my life is really like. We have this mythical idea about physical autonomy, physical perfection-we're the society of diet crazes and bizarre body-consciousness. In terms of building your happiness in life, the outside package matters so little. Also, there are problems in our manifest-destiny ideology, that wrest-your-world-out-of-the-wilderness idea. Complete independence is a very destructive idea. If we don't understand ourselves as interdependent, then you can maintain a clear line between people like me, with obvious physical needs, and everybody else. But there's nothing particularly unique about my physical needs in comparison with someone's financial needs or emotional needs. There's no place to draw a line between those things, but the assumption is that the citizen with complete autonomy is the ideal. As long as we pretend that's the way the world is, there will always be a bright line between me and you.2

 

This is a straightforward introduction to a brilliant and gifted man that many readers might not know, who shared his life story more than a decade ago in The Patient's Voice: Experiences of Illness.3 It is a story worthy of our utmost attention for our patients' lives and our own. In his "Mastery of Life," Allan Macurdy talks of his philosophy for having a meaningful life despite his serious and permanent disabilities. We witness his initial struggles when he learned of his genetic disease, feelings of injustice, intense anger, and fear of ever being independent. He learned when he was 8 years old that his life expectancy might only be 15 years. However, somehow, nearing the end of middle school, he had gained faith that his life had value, and he began to concentrate on being a kid and helping others with their reaction to his disability.

 

In his narrative, he describes his life-long involvement with healthcare providers and reveals important realities and principles that guided his every interaction with healthcare professionals.

 

First of all, he suggests that "caring" is not fully understood by healthcare professionals. "One can be a caring professional, endeavoring in good faith to help others, and still participate in a system that seeks to diminish and marginalize the patient."3(p12-13) He has a very real sense of the dangers inherent for all when healthcare practitioners do not examine what the "caring ethic" means to them personally and professionally. "The caring ethic masks the power inequity by convincing practitioners and the rest of us that because they are here to help others, no one is oppressed, no one could be victimized, and power just isn't relevant. Such is not reality, however. Politics is as real as physiology, even in the medical system."3(p12)

 

Macurdy's 4 principles are derived out of his hospital and home care experiences wherein he "learned many things about the medical system that had nothing to do with treating disease or caring, but everything to do with power."

 

This system, like any other human system is made up of political phenomena: hierarchies of professionals, chains of command, patterns of authority, institutional agendas. Seen as such, it no longer seems alien. Indeed, I have a political mind, so the system plays directly to my strength. Legally, all legitimate power is vested in the patients, providing, of course, that he or she is mentally competent and conscious. I was clearly both, but power will not tolerate a vacuum, so if I failed to use my power, someone else would. The device best suited to enhance the power of health professionals is their virtual monopoly on medical knowledge. Lack of access to information, except through such a professional, is extremely intimidating and causes the patient to give up a great deal of power. The institutions also coerce the patient through the loss of both privacy and scheduling autonomy. Macurdy's 4 principles are excerpted here.

 

As the person with the greatest stake in my healthcare, I make the decisions and no health professional can overrule my preference.

 

As I am the only legitimate decision maker, no one else is permitted to speak for me.

 

So if I am to speak for myself and make the decisions, it follows that I must have complete information[horizontal ellipsis]about myself.

 

Healthcare is a means to a full and meaningful life; it is not an end in itself.3(p13-14)

 

At the end of his life story, he wrote prophetically,

 

After nearly 35 years, my relationship with muscular dystrophy, like any other long-term relationship, has grown exceedingly close and complex. We have forged a bond as fellow travelers, and traveling the road together has taught me to fight but also to cherish life and the people who give that life meaning. For a long time I believed that the disease could not be real if I refused to acknowledge its existence-if I kept it out of sight. But I have always known my disease-companion to be close by, waiting just beyond my vision. Now I find that I prefer to invite my companion into the light of the fire rather than search for his eyes in the dark.3(p15)

 

References

 

1. Daniloff C. BU law professor Allan Macurdy dies at 47. BU Today. http://www.bu.edu. June 6, 2008;7045. [Context Link]

 

2. Koch J. The interview. The Boston Globe Magazine. September 11, 1999;10. [Context Link]

 

3. Macurdy A. Mastery of life. In: Young-Mason J, ed. The Patient's Voice: Experiences of Illness. Philadelphia, PA: FA Davis; 1997. [Context Link]