My housemate came in my room on New Year’s Eve and asked if I had slept alright and I said … nothing. For the life of me I could not make a single sound. So I motioned an “I slept okay” with my hands while continually to try, unsuccessfully, to get my voice back.
17 mugs of Vimto later things had not progressed, so I resigned myself to using James as my translator for the day. I taught him some basic signs and grabbed a pad of paper and a pen for the more difficult sentences. While annoying, it was not the end of the world (and was definitely a source of enjoyment to my cruel housemates!)
That is, it wasn’t a big deal until we went to a New Year’s Eve party and tried to interact with the 20+ people at the house. It was loud and busy and the conversation was fast paced and varied.
I am always trying to understand what it is like to face the challenges those I work with face. I wore gloves for a day to see what it’s like to have less sensory input, have used a wheelchair on countless occasions, tried to use an uneven arm swing when walking to mimic the gait of someone with Parkinson’s, etc. NYE was an unexpected but perfect opportunity for me to get some insight into what it is like for people who communicate nonverbally. To step into their shoes for a day. Now obviously it is not a perfect representation but I think I learned a few good lessons.
Of the 7 kids in my class at Craig y Parc, 6 of them have speech difficulties, and 3 of them are completely nonverbal. They communicate with a mixture of eye pointing, signing, communication aids on tablets and computers, body language, and flip books with key words in them. I didn’t have most of these things, so I made do with some signing (very unhelpful that American Sign Language and British Sign Language are completely different), some body language, and quite a bit of exasperated eye rolling.
In no specific order, here are a few things I experienced/learned/realized during my day without spoken words.
- Eye contact is crucial. I cannot stress enough the importance of eye contact when you cannot speak out loud. I found myself on many occasions in the awkward position of being unable to “say” thank you or hello because someone didn’t make eye contact for me. For example, when someone gave me a drink but didn’t look at me. I could not say thank you out loud, couldn’t reach them to get their attention, so was just left unable to express my thanks. Feeling a bit rude. I could also communicate a lot more when someone was looking me in the eye. I could answer most question more easily with a facial expression than with miming. Most of the time people were good about this, it was just missed when things got loud and busy. Sometimes our kids will say yes with their hands and no with their eyes. They use everything they have to communicate, and have to be given the opportunity to do so. Which means it is important that whoever is speaking to them looks them in the eye.
- Dependence is frustrating. I very much appreciate that James was so helpful in translating a lot of what I wanted to say. He knows what I think about most things, could respond to questions about my Christmas, and knew more American Sign Language than anyone else. However, there were a few issues with the arrangement. If James was not by my side I was left without a translator. It wasn’t fair on him to keep him tied to my side, but it made it difficult for me when he wasn’t. It was annoying when he mistranslated something I was trying to say (sometimes by accident, sometimes on purpose…) It was just overall frustrating to depend upon someone else for every conversation. It is extremely common that if someone who is nonverbal has a carer, that person becomes their voice. This increase their communication levels but keeps them extremely dependent on that person.
- Moments pass quickly. I come from a fast paced, witty family that can’t get enough dry sarcasm. It was so annoying to have something to add to a conversation and to ‘miss the moment.’ By the time I had relayed to James what I wanted to say, the conversation was usually on to the next topic. My little brother has a wicked sense of humour but is nonverbal. This means that if he cannot express what he wants to add quickly and understandably we miss out on his humour. I wonder how often this happens to nonverbal individuals. How often they have something funny or insightful to add but are not able to do so before the moment passes.
- When you communicate differently, you can end up feeling side-lined. As I mentioned, I was at the mercy of having my personal translator, James, if I wanted to engage in a proper conversation that went beyond how I take my tea. Whilst I do love to sit back and watch people, I am hopelessly extroverted and can’t stand not putting forward my opinion or knowledge on a subject. Throughout the night I felt side-lined. I was part of the party, but not like I wanted to be. Often, people who are nonverbal are asked simple questions that the questioner feels confident they will be able to understand the response to. “Did you enjoy your Christmas?” “do you like NY’s parties?” etc. But I don’t want to answer all night that I enjoyed my Christmas and like a party, I want to tell you that I got an amazing new game called Nabbit that’s like a faster version of scrabble (seriously, it’s great, come play with me.) I want to tell you about the best NYs party I’ve been to. I want to add my thoughts on the conversation about the difficulty that faces women who want both kids and a career that you were having before you turned to me and asked “are you having a nice time?” This is something I want to be better at. I want to include others in the way I want to be included. I don’t want to be afraid of not being able to understand. I want to give people the opportunity to talk about what they want to talk about. The opportunity that I take so for granted.
- You can’t fight every battle. I quickly realized I was going to have to choose my ‘battles.’ I had to decide when it was worth the effort of communicating something and when it wasn’t. Anyone who knows me will attest to the fact that I pretty much always feel it is worth adding my 2-cents. However, faced with the prospect of miming, writing out, or communicating through James some things just didn’t seem as important. It made me think of my little brother, who we have been trying to encourage to initiate conversation with a communication device rather than only with his own made up signs that pretty much only my immediate family understands. It occurred to me that it must not always feel worth the effort to him to communicate something to us. It is very important for us to give our students tools to communicate to a wider audience (those who don’t understand their modified signing and body language) but I think it is also worth remembering that it is not easy and we should not fully discourage them from using their own communication tools.
- Just feeling a bit awkward. Sometimes being unable to communicate in the way everyone else is communicating is just plain awkward. It can be uncomfortable when you walk in and can’t say “thanks! Happy New Year to you too!” It can be awkward to sit in silence because you cannot be bothered to try to make conversation with someone who won’t understand anything you are saying. I wonder how often people who are nonverbal just feel a bit awkward in a situation.
- Does he take sugar? Does He Take Sugar was a programme on BBC on disability awareness. The title highlighted an issue many individuals with disabilities face; people talking to whoever is with them rather than directly to them. Throughout the party, I often passed questions over to James to answer, but appreciated them being addressed to me. I should get to decide when to answer a question myself and when to pass it over (I talked about this in another post here: https://jjzapf.wordpress.com/2013/04/27/please-do-not/). At one point, a friend asked me if I wanted something to drink. She said she was going to ask James but then thought that was a bit rude. It is understandable, it would have been a bit easier for her to ask James rather than me, but she was right. That is rude. It is important not to take the easy way out. Don’t ask around someone, ask them. If they are unable to answer, THEN you move on to the person with them. Whenever someone asks me something about someone I am working with I redirect them to that person. “I don’t know, C, do you take sugar?”
So those are my thoughts on my day in the life of someone who communicates nonverbally. New Year’s resolution #1: make a bigger effort to include and communicate with the students in my class who are nonverbal. Even when it’s awkward, even when it’s hard. I want to keep in mind just how much they are up against and do everything in my power to break down a few of the barriers they are facing.
As always, I would love to hear your thoughts!
Happy New Year!