Dinner in the Dark
By Krista Bohl, Illinois H&V
It had been two months of constant frustration by my DeafBlind junior high daughter. Why were people forgetting to use her microphone? Why didn’t others understand that she needed to sit in the middle of the friend group in order to be a part of the conversation? Why would people always say “never mind” after she needed them to repeat a comment a second time? The lack of other’s willingness to accommodate and understand her needs was wearing her down. Being DeafBlind in junior high is overwhelming. The nuances of social interactions, mood swings, on again/off again friendships, is hard enough to navigate in junior high – add to that a dual sensory loss and one feels like the deck is stacked against them. I didn’t want my daughter traveling through her school years with others who didn’t understand her situation. I wanted them to put themselves in her shoes at an early age, so that maybe, just maybe, they would choose different responses. As her mom, I wanted classmates to see her as the amazing teen she is. I warned her that we were working with middle schoolers. Could we create a fun learning experience for her classmates that would foster DeafBlind understanding?
We lowered our expectations when it came to empathy and attention span and got to work!
My daughter made up a catchy party phrase on text. “Have you ever wondered what it is like to have low vision and a hearing impairment? Come experience the first annual Dinner in the Dark!” I told her to invite anyone she interacted with on a regular basis. The RSVPs were coming in minutes after sending the text. They seemed excited and intrigued.
I spent the next week making individual masks out of packing bubble. This seemed to be the best representation of how she sees the world. With the mask on, I couldn’t see details of others in front of me – just an outline of their body. I definitely couldn’t read normal size print. We also gathered together ear plugs and noise blocking ear muffs, to help one experience what it is like to be hearing impaired.
The day of the party arrived. My daughter would be in charge; I wanted her to own this experience. Her friends arrived one by one. We made them stay in the front room so that they would not receive any visual cues as to what was being served for dinner. Masks were given out with ear plugs. They were encouraged to wear them as long as they could. They then entered the dark dining room. The excitement was growing. We explained that we would start a plate at one end and they would pass it around. We would not be telling them what was being served. As we started the dinner the girls were already saying “what?” due to the ear plugs in their ears. Many were quiet, intently trying to figure out what food was in front of them. Others were sniffing the food and taking it or passing it on. Still others were yelling “Ew!” when they realized what they thought was a grape was really a tomato. I started hearing them saying, “You’re amazing. How do you do this?” One friend on the end of the table did not say anything the entire dinner. This friend didn’t know what was going on because she couldn’t see or hear well enough. She later told the group that they needed to let my daughter sit in the middle of the group at lunch, because now she knew how it felt.
They then moved on to games. They started with ping pong. It got a little crazy, but I think they got the point. My daughter then handed out questions from the game Would You Rather that were printed on a piece of paper. The girls were supposed to respond to the questions they received. After struggling for a few minutes, they started asking my daughter for the devices they see her use at school. One ran to the office where her CCTV was set up.
Eventually it was time for dessert. We had chosen sundaes. Everything was out of its original packaging and placed in separate bowls, to make it more visually challenging. I even got out my most busy tablecloth. It got extremely messy. Everyone was concentrating very hard as they bent down as close as possible to the bowl, hoping not to spill.
Later that evening, my daughter opened it up to questions. She said they could ask her anything. To my surprise, they sat around and talked about their experiences and asked her questions for 45 minutes.
I severely underestimated this age group. They asked questions they had never dared to ask in the past. I heard them ask my daughter personal questions like “Are you upset that you were born with vision and hearing loss?” This was hard to hear. But that type of question helps everyone grow and reflect, even the person being asked. Many of the girls had been in classes with her for six years. Tonight, they finally felt the freedom to ask their unspoken questions. When the parents showed up, the girls were still reflecting on the evening. As we were picking up after the party, I could tell my daughter felt empowered and excited.
Things have not been perfect since that evening. They occasionally forget to pass her microphone or leave her sitting on the outside of the group. But seeds were planted. Understanding was sown. And hopefully, from this moment forward, when they see someone with a vision or hearing impairment, all the feelings they experienced tonight will come flooding back. Inclusion goes beyond allowing those with disabilities to be a part of mainstream activities. It means befriending them and inviting them into your life as an equal. ~