Meet Marci!

Marci was a woman from Ft. Worth, Texas, who experienced one of the most significant impact of disability of anyone MG&A ever worked with. Marci represents almost perfectly an entire group of people in our society for whom the idea of a meaningful life evokes feelings of confusion, complexity, and doubt. Even if society were to embrace the notion that Marci should have a life of participation and passion, membership, relevance, and the opportunity for contribution, figuring out how to assist her to accomplish all that would still be difficult.

While Marci’s parents were confused as to what a meaningful life should look like, they felt she needed to make a contribution to her community and be appreciated for that contribution. Some would say that Marci and persons like her should simply be appreciated, honored. and included in society “for whom they are”, without arbitrary or typical expectations. While Marci’s parents certainly agreed with the idea of acceptance for their daughter, they wanted far more. They wanted Marci to experience the daily routines, the variety, the ebb and flow of a typical life. Most particularly they wanted Marci to have a job.

Discovery allowed Marci’s complex life to be explored rather than to be compared to others. And it provided a new way of looking at her disability. Instead of seeing Marci’s life in relation to traditional indicators of success such as skill levels, productivity, independent performance and the like, she could be viewed from the perspective of what works in her life, what moves her to be present, and what kinds of supports might she need to make a contribution. We found that instead of capturing Marci in a two-page assessment report of comparative performance that her complex life could be described in a document the size of a book. Of course, no one wanted to write a book before Marci became employed so a ten page descriptive profile was used to capture all the information found in discovery.

Marci did not speak and the communication she used was the most subtle imaginable. Since birth, her mother says that Marci had never shown emotion though facial expression. Her body is often in a state of movement and, occasionally, what appears to be agitation. Her mom says that when the external situation is pleasing and meaningful to Marci, she becomes still, attentive, and present. It provided the clearest way for Marci to express choice and preference. Marci rarely interacts in a physical manner with objects and people, but we learned that she does have some control over her right arm that is less rigid from spasticity than her left. She often moved that arm across the front of her body in a gentle rocking motion from right to left.

The process of discovery was essential to uncover the subtle manner in which Marci expressed her feelings and reacts to the world around her. We were able to determine the environmental conditions that seemed to fit best with Marci as well as those situations and people she seemed to prefer over others. What was missing from the equation was a way for Marci to contribute in a work place.

In reviewing her school records, it was discovered that teachers had attempted to introduce a saucier-shaped electrical switch to Marci for purposes of turning on a tape recorder for playing music. This single idea, derived through discovery, was the basis for Marci’s job using Customized Employment as a specialty stapler in the personnel office at the Fort Worth Star Telegram, the daily newspaper for that city. She worked for over eleven years in a job in which the hours are set to meet Marci’s needs. The switch that Marci turned on, initially, to hear the music she liked, operated the stapler. Within a couple of months, the music was no longer needed. She received commensurate pay over minimum wage for her work and assistance from a job trainer funded by the Medicaid Waiver program in her state. Since starting work, Marci routinely made more per hour than her support personnel. Later, shredding of personnel documents was added to her responsibilities. This task utilized a sheet feeder, which Marci operated with her switch, comprised of an old ink-jet printer Velcro taped to the top of the office’s auto-feed shredder.

Marci was employed at the Star Telegraph for eleven years. She died in 2013. But this job only cracked open the door to the possibility of others with Marci’s degree of disability having a life that approximates the rhythms of others in her community.