Transforming My Experience Into a Vehicle for Change

Finding Myself in Crisis

One Friday night, during the 1996 football season, my husband and I received a phone call informing us that our 13-year-old son had fainted during an at-home game. My husband rushed out without me, and when he and our son returned, all they said was that my son was "fine."

Their actions may sound strange, but communication between members of my family had been suffering for some time. Over the past 10 years, I have gradually lost my hearing, and we were still having trouble adjusting to the fact that I am now profoundly deaf.

At that moment, I was already dealing with graduate school, a new job, the pressures involved with literally hammering together a new home -- and the final loss of my hearing. It all suddenly became too much, and I started to fall apart.

"My God," I finally realized, "I need help!"

As I drove myself to Maine Medical Center (MMC), I thought I had some idea of what I was getting into. I was, after all, a graduate student enrolled in a rehabilitation counseling program and a social service professional. But nothing had prepared me for the experience that followed.

Being Hospitalized and Deciding to Sue

At first I fell victim to the staff's assumption that if I could talk, I couldn't possibly be deaf. So I was basically ignored in the waiting area -- until I guessed what was going on -- and later described my situation to a physician who once again listened to me and conversed with me as if I could hear him.

By the time of the psychiatrist's interview, I was in another room and, for some reason, a guard was placed at my door. I was eventually admitted to the psychiatric unit that did not have a working TTY. When one finally turned up, it was promptly locked in a conference room. When I learned this, I threw something and went to my room where a nurse came in to invite me to a nightly "wrap-up" group -- without an interpreter. My behavior evidently led the staff to require me to participate in an "anger management" group -- again, without an interpreter! These incidents -- and many more -- made the decision to sue easy. I felt very strongly that if someone like me -- someone who could self-advocate in spoken English -- could not get her communication needs met, then very few deaf people could.

The process of filing the complaint (lawsuit), however, was harder than I thought it would be. Things went well at first. Shortly after I filed the initial complaint with the Maine Human Rights Commission, the National Association of the Deaf (NAD) joined my legal team. Then the U.S. Department of Justice (DOJ) became a plaintiff along with me because the DOJ saw it as a way to enforce Title III of the Americans with Disabilities Act (ADA).

Dealing with the Aftermath

My entire life was affected by the lawsuit. My depression worsened, and my medications were adjusted, but to no avail. The stress seemed unbearable. I thought of dropping the suit often but I would always wind up asking myself "How will I feel five years from now if I don't follow through with this?"

In May, 16 months after my hospitalization, the consent decree was signed.

In retrospect, the best rewards have come from individuals who have told me about the wonderful changes they have experienced at MMC as a result of the consent decree. MMC is now proactively assessing and providing accommodations for deaf, hard of hearing, and late deafened people.

Knowing that my battle has alleviated the added anxiety, helplessness and frustration that deaf people often feel in situations like mine has made it all worthwhile.

Editor's Note: This article appeared in the March 1999 issue of "The NAD Broadcaster." Reprinted from the Maine Association of the Deaf's newsletter, with permission of Janet DeVinney.