Why I Do What I Do

By Dr. Matthew Wappett, executive director: Think about it…when was the last time someone asked you why you care about certain things? What are you building through your daily efforts here at the CPD? I can 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 sounded like some sort of animal in distress; like a wounded rabbit (which 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 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. 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 realized an adolescent boy, maybe 14-16 years old, was completely naked and chained to the wall by one wrist and one ankle. He 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. It reeked of infection and death. Then the small slot in the door 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 1960s. Even though students with disabilities had the right to attend public school, they rarely interacted with us. They rode the “short bus”. It usually got to school about the time the bell rang for classes to begin. 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 I could hear some of them shout and holler as they made their way through the empty halls toward the special education room where they would stay until the end of the day. Then 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. Clearly, they weren’t like us. Nobody knew who they were, or at least they didn’t admit it if they did know them. At that time I didn’t realize that I had been socialized into a particular social grouping, and afforded opportunities and privileges 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 and try 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 it: ensuring equal human rights for everyone, but 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 solve these problems. I am proud to say that the CPD has historically been recognized as a leader in the nation in driving this change. Sometimes it feels like “the system” is winning. Sometimes we feel like we are jousting at windmills. This is natural, but we cannot give up or lose our vision. To keep working through the hard times we have to have a tremendous amount of faith that we are making a difference, even if we are unable to see that difference in our lifetimes. Thank you all for all you do. I am constantly humbled and amazed at the talent and dedication you bring to your work, and I am honored to be able to work with each of you.