Why Do You Do What You Do?: Finding Purpose in Life and Work

Back in 2004, I was working at the University of Alaska Anchorage.  At that time I had a good friend who enjoyed discussing politics and heavy philosophical topics like justice, oppression, and human rights. She especially liked to discuss equal rights and gender issues, and she would often argue that it was better to be a man than a woman in contemporary U.S. society.  I did not agree with her assessment and I tried to convince her that being a man was not as wonderful as it may seem. I would argue that there were tremendous advantages to being a woman. During one of our more heated conversations she asked me a question that I couldn’t immediately answer: Why do I, as a white, middle-class, male, even care about the rights of women, people with disabilities, and other oppressed groups?

As odd as it may seem, I had never really thought about it.  It’s a fair question, and one that is not asked enough. Think about it…when was the last time someone asked you WHY you care about certain things?  Why do you do what you do?  What gets you out of bed every day?  What are you working for? 

Have you thought about these questions recently?  My fear is that many of us haven’t considered these questions for a very long time, but these questions are so very important for the work that we do. I can actually pinpoint the exact moment in my life that keeps me focused on why I do what I do: 

It was a hot afternoon in Xindian, Taiwan in 1992 and I was visiting the home of of the Tseng family who had befriended me while I lived there.  We were sitting outside in the humid summer air drinking tea and talking when all of a sudden there was a strange noise that came from inside the house.  It was a noise that sounded like some sort of animal in distress; it sounded like a wounded rabbit (which, by the way, is one of the most horrifying sounds in the world).  

I had heard the sound before, but I had always been inside the house and it had been much fainter.  I had always assumed that the sound was from some sort of animal…in those days Xindian was on the outskirts of Taipei county and the jungle was in the back yard.  There were tons of exotic creatures to be found in the jungles, from monkeys, snakes, bats, and giant rodents that people would frequently catch and keep as pets (or as future food).  So, I just assumed that the Tseng family had some animal caged up in the back of their house.

When the noise started again that afternoon, Mr. Tseng excused himself to go take care of it, and left me sitting alone on the porch.  It was clear that the sound was coming from the room next to where I was sitting, and that the window to the room was slightly ajar.  My curious nature got the best of me and I pried the window open a bit more so I could peek into the darkened room and see what was making the noise.  Nothing that I had seen up to that point prepared me for what I saw in that room.  

As my eyes adjusted to the dim light, I could make out the shape of a person laying on the floor of a bare concrete room.  It took me a while to figure out what I was looking at, but I quickly recognized that the dark room was occupied by an adolescent boy, maybe 14-16 years old, who was completely naked and chained to the wall by one wrist and one ankle.  The boy was clearly malnourished, unable to stand up, and had lost all of his hair on his head.  As I looked in a small slot  in the bottom of the door to the room opened up and a dish of food or water was slid into the room by Mr. Tseng; in the small sliver of light I could tell that the boy had sores that were worn down to the bone where the restraints were on his wrist and ankle.  Opening the small slot in the door also changed the air pressure in the room and allowed a small breath of air to pass through the darkness and then out the window where I was watching.  The slight breath of air that escaped the room reeked of infection and death.   Then the small slot in the door was closed again, the boy’s free hand shakily reached for the bowl that had been slid into the room, and he was quiet again.

I was aware that there were kids with disabilities when I was growing up, but only in a very superficial way.  I was in the first generation of students to attend public school following the deinstitutionalization movement of the 1960’s and the landmark Education for All Handicapped Children Act (EAHCA) of 1975.  Even though students with disabilities had the right to attend public school, they rarely if ever, interacted with us. They rode a whole different bus – the “short bus”.  The short bus usually got to school about the time the bell rang for classes to begin in middle and high school.  As we sat in class we could look out the windows of the classroom and watch the motley assortment of students disembarking from the short bus.  Some lurched down the steep steps, some were escorted by aides who held their hands all the way into the school, others were lowered on the wheelchair lift at the back of the bus, all of them were clearly different and not part of my world.  After they entered the school you could hear some of them as they made their way through the empty halls toward the special education room where they would stay until the end of the day.  

At the end of the school day, the parade began all over again in reverse.  Thirty minutes before the rest of us got out of class, the door to the special education room would open, the empty halls would again be filled with shouting and hollering as aides and teachers herded the students with disabilities back out the front doors, and onto the short bus.  The short bus would always be gone by the time the rest of us got out of class.  Clearly, they weren’t like us.  Nobody knew who they were, or at least they didn’t admit it if they did know them.  They rode a different bus, they started and ended school at different times, they didn’t attend our classes, they didn’t eat lunch with us, and they didn’t pass us in the halls when we were going between classes.  Although we never talked about them we all knew who they were and we knew where they belonged, and most importantly we knew they weren’t us and did not belong where we belonged.

At that time I didn’t realize that I had been socialized into a particular social grouping and, as a result, had been afforded opportunities and privileges that were denied to others.  I didn’t consciously hear or understand the language, both verbal and nonverbal, that was used to reinforce and protect my social status.  But it was there, all around me and my peers.  It was in the language used to refer to others; it was in the places we occupied in the halls and classrooms; it was in the way teachers and administrators interacted with us, and in the case of the students with disabilities it was in the times they were allowed to cross through our physical spaces. I started to become aware of these things on that stiflingly hot afternoon in Taiwan.

I wish I could say that I somehow rescued the boy in the room. I really had no idea how to begin addressing the problem, but that lack of knowledge drove me to learn.  I wanted to figure out how to begin to solve the problem.  I am still learning, and I am still haunted by what I saw, and that motivates me to keep working on the problem: ensuring equal human rights for everyone, and especially people with disabilities.  I have never found myself wondering why I do what I do, because ignoring what I saw is not an option.  Institutional models of care, segregation, restraint, neglect, and abuse are all still daily realities for far too many people in our world today and as a human being I have a responsibility to do what I can to address these problems. 

 Solving large social problems requires concerted, collective effort; this is why I found myself drawn towards the UCEDD system.  University Centers for Excellence in Developmental Disabilities (UCEDD) were established over 60 years ago to provide research, training, and service to address the physical, mental, and social problems facing people with disabilities in the U.S.  The UCEDDs around this country have created an immense amount of social and political change for people with disabilities, and I am proud to say that I have spent my entire career working in the UCEDDs in Alaska, Idaho, and now Utah.  

The organization that I now lead, the Center for Persons with Disabilities (CPD) at Utah State University, is a large diverse organization with many different projects addressing the needs of people with disabilities and other marginalized groups across the lifespan.  Sometimes it feels like we are running in many different directions and that we aren’t making a difference.  Sometimes it feels like “the system” is winning.  Sometimes we feel like we are jousting at windmills. To keep working through the hard times requires a tremendous amount of faith.  We have to believe that we are making a difference, even if we are unable to see that difference in our lifetime(s). 

One of my favorite metaphors is that of "cathedral building", frequently used by Bill Shore, the founder of the non-profit Share Our Strength (S.O.S). Bill points out that the cathedrals in Europe were structures that required hundreds of years to build. Cathedrals began with a vision by the architects and craftsmen of a particular generation and they laid the foundations, but the final edifice was not completed until well after the original architects and craftsmen were dead. Generation after generation labored to build these massive buildings and almost all of the workmen never lived to see the final result of their efforts. They labored daily to build these magnificent structures because they had faith that they were working on something that would be a permanent monument, and an enduring testament to their efforts and sacrifice. The cathedral builders were engaged in a work that ensured their immortality.  So, my question to you is: What is your cathedral?  What are you building every day?  What are we building together?  Why do you do what you do?