Earlier this week I had a unique experience that I can’t stop thinking about—I took a “virtual dementia tour” given by a local caregiving agency. The purpose of the tour, held at the Charles Bierman Home in South Orange, was to raise awareness about people who live with dementia by simulating what it is like to live with dementia and other sensory impairment problems. After listening to a brief set of instructions read by the social worker who coordinated the experience, I was given inserts to put in my shoes that simulated what it would be like to live with neuropathy, two sets of gloves to simulate the absence of fine motor skill, headphones to simulate the kind of noise perception that makes it difficult to concentrate, and special goggles to simulate macular degeneration and other forms of vision impairment. As I walked down a hallway into a small bedroom, I could feel the unpleasant tingling on the soles of my feet caused by the inserts. The coordinator read some additional instructions to me, but the noise coming through the headphones made it nearly impossible to understand what was being said to me. I sat on the edge of the bed, feeling anxious because of the noise and inability to see clearly. The test coordinator spoke to me a couple of times, but I still could not comprehend what she was saying. At the end of the experience, I learned that I was being told to do five tasks, such simple things as folding a sweater and putting something on the dresser. But the gloves, goggles and headphones made it impossible to do any of those things. Could this be what it’s like to live with dementia? If so, what a terrible burden such a limitation must be for those who suffer with it.
We tend to overlook people with impairments such as dementia. We often react with impatience to people who are slow to respond to situations because of some limitation they face in life. We expect normal functioning from people, perhaps unaware that they suffer quietly from a condition that does not allow them to behave in ways that are considered normal. We may be capable of sensitivity and understanding, but we often do not display those characteristics.
What we need is a reminder that some people deserve special consideration. Ironically, the Jewish tradition includes such a daily reminder to treat others with understanding and empathy. At the end of this week’s parasha, Shelach Lecha, we find the familiar passage, imbedded in our daily prayers, that describes the practice of placing “tsitsit,” specially tied fringes, on the corners of our garments. Most Jews uphold this commandment by wearing a tallit during services, while some fulfill the mitzvah by wearing a special garment—called “Tallit Katan” (small tallit) or “Arba Kanfot” (four corners)—under their shirt. The fringes are tied in a special way to symbolize God’s commandments and are meant to remind us to follow the ways of the Torah. Think of tsitsit as a perpetual reminder to do the right thing. We are capable of behaving in ways that are moral and ethical, but we sometimes miss the mark. Tsitsit are a daily reminder to do the right thing for ordinary, good people who sometimes fail to do what is good not because they are cruel or unkind by nature, but because from time to time they need to be reminded of the right thing to do.
My experience of simulated dementia was a bit harrowing and unsettling, eye opening and illuminating. I learned a lot about how difficult life can be for people with severe limitations. We could all stand to be reminded to adjust our behavior to accommodate, both physically and emotionally, those who need extra support, understanding and consideration and, thankfully, one of the “fringe benefits” of Judaism is a daily means of doing so.