Communication of Needs

It was December 2016. I lay in a hospital bed in the intensive care unit of a large medical center, a four-hour drive from my new home. But it didn’t take me four hours to get there. Less than three weeks after moving to our new home, I had a serious heart attack, and a swift helicopter ride to this unknown place in a city I hardly knew was a last ditch effort to save me from the ongoing heart arrhythmias that threatened my life.

When I was aware of what was happening, I learned that I had a breathing tube. Try as I might, I couldn’t talk. When I was given a pen and paper, I couldn’t sit up enough and I didn’t have enough energy to write legibly. While the nurses were kind and wanted to help meet my basic needs, all they could do was ask questions, and about all I could do was nod up and down, “yes,” or side to side, “no.” At times, I became frustrated enough that they had me write letters on the palm of a hand to try to spell out what I was trying to say. Even my wife resorted to that technique, but with only limited success.

Despite my frustration, I tried to keep calm and make the best of my situation. Then, it dawned on me! The feelings inside of me were a taste of what it must be like for a person with disabilities in verbal communication!

I have been on the other end of the two-way communication as I tried to understand the needs and wishes of persons on the autism spectrum. I have shared the frustration of being on the receiving end and not able to understand. I have tried to solve the puzzles of what persons with autism were trying to communicate with what seemed like increasingly inappropriate behaviors. I was present when frustration turned destructive with slamming doors, throwing objects, and lashing out at the people around. I was even physically hurt in some of these exchanges, although thankfully not seriously.

Yet, this was different. Here, I was the one who could not communicate adequately, even my most basic needs. It was I who needed to be creative in communicating with whatever body parts were available. It was I who needed to conform to whatever communication methods I was offered. It was I who felt the helplessness and dependency on others to become aware of and meet simple human needs. It was I who faced the rising frustration inside of myself when people who could help couldn’t understand.

At the same time, I also had some advantages that persons with more permanent communication disabilities don’t have. My mind was intact and I could think creatively about how to try new things. I had some ability in the short term to communicate well enough that I never seriously went without something that was truly important to my well being. I also had hope in the long term that my condition was reversible, that despite multiple attempts that failed, that one day the breathing tube would come out and I could talk again. A clear mind and a clear hope set my situation apart from my friends with ongoing persistent communications disabilities.

I also thought about some newer communication technology. At various times, I was able to use my iPad in a limited way to type out my thoughts. I thought about my son back in a group home in Indiana, who had his own iPad which he has used to augment his communications skills with family and close friends. I tried to imagine what he must feel like having said “good-bye” to his father who promised to come back and visit him soon, and then finding out that he may never come back. So I tried to send him only occasional pictures which communicated landmarks along the way that said clearly, “I’m alive, I’m getting better, and I love you.” I consider it by the grace of God and a very supportive mother that he got through this period of time coping with the feelings he couldn’t express with his limited vocabulary.

In the end, the whole experience pointed out how important it is to communicate by whatever means are available and most helpful. Communication is essential to relationships which in turn are an essential aspect of what it means to be human. When we encounter people who for whatever reason cannot adequately communicate verbally, it is up to us who have those abilities to accommodate in whatever ways we can. The onus is on us to build relationships.

Faith communities should know this truth most of all. In my own Christian tradition, our faith rests upon the notion that throughout history, God has sought to restore relationships broken by the sinful human condition. God communicated love, acceptance, and even salvation by sending Jesus to show us who God is and what God is like. Despite our utter inability in our fallenness to find our way back to a relationship with God, God comes to us, accommodates to our needs, and communicates in ways that we can understand. May we be instruments of communication and relationship in the hands of God to do likewise with our brothers and sisters with disabilities in our midst.

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Contact CAN

Congregational Accessibility Network (CAN)
1840 Homewood Ave.
Williamsport, PA 17701-3935
(574) 383-9398