For the past seven years, I have worked as an Intervenor in mainstream schools. This means that I have supported students who are Deafblind in a one to one position. When people who work outside of the world of education, and specifically, disability, hear this they are often curious. How do you communicate? Usually, a Deafblind person does not have complete vision or hearing loss, but a combination of a degree of both. This creates a disability that is unique amongst other types of sensory loss, but also unique to each individual, meaning that communication needs are also unique from person to person.
Deafblindness is an “information gathering disorder,” meaning that the Deafblind person does not have access to the information that allows them to make sense of the world. So, to communicate this person needs as many opportunities to access information as possible – through voice, object and tactile cues, touch, visual cues (symbols and photos) and sign language. This is called a ‘total communication system.’ Sign language can be presented for the Deafblind person to see if they have adequate vision (often the signer must be close and in a preferred field of vision) or can be used in pro-tactile or ‘hand under hand’ sign. This is when sign language is signed onto a person’s hands, with the “speaking hands” on top, and the “listening hands” held open underneath. The ultimate goal when working with a Deafblind person who does not have expressive language is always that they will become an expressive communicator.
The students who I have worked with have had complex needs in addition to their Deafblindness. I have worked with three students, and each has had physical disabilities, cognitive disabilities and medical issues that have additionally informed the way that they learn. In a school context, relationships with peers, sense of place and belonging in the school community, and learning goals are always central themes. For classmates who want to connect with these students who obviously learn and communicate differently, sign language has been a kind of meeting place. Typically abled peers can learn sign language as a way to connect with these Deafblind students. In contrast to Deaf culture, where exclusively signing spaces are the norm, for Deafblind students in mainstream schools a signing environment must be created. This is also true of any non-speaking student who could benefit from sign language as a way to communicate.
Part of the reason I was inspired to focus on the American Sign Language alphabet in my artwork was because I wanted to show that communication is of primary importance, and assert that it is actually a right. In mainstream schools there is still a danger that students who don’t communicate typically will drift through their schooling without learning meaningful alternative ways of letting those around them know their needs, wants and life narratives. Amidst concerns of medicalization, convenience (it is often easiest to anticipate the needs and desires of the student and automatically fulfill them) and appearing “normal” (and doing tasks that are not meaningful or goal fulfilling for the student, but are the same as their peers) it was crucial to me that the students I worked with were always seen foremost as communicators.
Communication is necessary for individuals to assert their personality, needs, wants, and individuality, and to feel a true sense of connection to others; to feel fully known and understood. Often one’s personhood is assessed by others, though probably not intentionally or consciously, based on that person’s ability to communicate with formal language. In a context where caregivers and educators might take for granted that disability corresponds to child-like passivity and co-operation, communication is essential for agency, individuality, and self-determination.
People with disabilities and their allies have been advocating for their rights to these human needs for a long time, and people with disabilities continue to fight to be treated as equal citizens of our country. Institutionalization as a default practice for housing people with intellectual disabilities is very recent, continuing to this day despite the fact that it goes against Article 19 of the UN Convention of Rights for Persons with Disabilities*, which Canada ratified in 2010. The absence of communication, or voicelessness, perpetuates the belief that people with disabilities should have their decisions made for them, and settle for what they get.
So enabling a form of voice has been a huge theme while I’ve supported students. Matching vocabulary to the day to day life and readiness of the student, I have learned some ASL vocabulary and have been practising signed English with students. Signed English is distinct from ASL because it lacks the grammar and syntax of ASL, and instead matches the signs to spoken English.
I am not fluent in sign language, and I am not part of Deaf Culture. So I have asked myself the question (and been asked), is it really my place to make and share this artwork? Will I appear to be taking a position of authority over a language that is not even my own? This year I have taken two beginner ASL courses which also teach students about cultural issues around Deafness. Appropriation in the name of sharing and celebration comes up. The topic of taking away opportunities from Deaf artists comes up. Both are not okay. The more I learned about the complexity and sensitivity surrounding ASL, the more I had to ask myself- what am I trying to accomplish?
As I move away from Intervention, and go forward to support students with other types of needs, I am contemplating what this past seven years has taught me. Within the small Intervenor community I have been part of, the phrase “Intervention is 50% PR” (public relations) comes up a lot. When we face challenges around defining learning goals in a team environment, finding a place socially for our students, creating physical space for often bulky communication and calendar systems in already crowded classrooms, and making sure our prep time is spent creating the resources our students need, we practise the delicate art of PR.
With the ASL drawings, I guess I am in part falling into this practised role of intermediary. I want to draw the hearing and typically abled community in to engage with a language they may not have contemplated before, to see that it is worth spending time with, to see that it is worthy of recognition and respect. I want ASL to enter the mainstream, so that any learner who does not speak can have access to natural, embodied expression in a community that can understand and know them. I know that pen and paper are not capable of accomplishing all of that, but they served me well in giving my own voice to this wish.
To address the concern of ASL and Deaf artists, I do not want to claim any space that could be filled by Deaf people. My drawings are a contemplation, honouring and sharing, a visual place for my thoughts and feelings about what I’ve just written about, but they are not an authority and are not intended to perpetuate systems of the disempowerment of Deaf people. I recognize that Deafness is not disability, though I imagine there are shared experiences between people with both identities. I recognize that Deaf people are capable of speaking for themselves, and do not need me to speak on their behalf.
I also feel that sign language is needed in places it is not yet being used, for various reasons such as lack of community based and accessible training (versus four-year programs through formal educational institutes), a belief that technology can serve the same purposes, and that sign language isn’t common enough to be a life long practical communication tool. Now that ASL may become a third official language in Canada, perhaps we are seeing a change? Maybe teaching sign language to those who need it will be properly funded and organized in the near future. But until then, we need to do our best to make sure everyone who does not yet communicate has access to the means to do so.
I encourage you, dear Reader, to learn about Deaf culture and history, as well as the history of disability, and to explore the visual art, theatre and writing of both groups. I have included a couple of links below to get you started. I invite you to learn with me, how we can better communicate with everyone in our community.
Canadian Cultural Society of the Deaf – artist directory
Christine Sun Kim- TED interview and videos – explores the concept of sound through visual art
Ken Glickman- comedian
RIT National Technical Institute for the Deaf– artist directory
Zoée Nuage– Vancouver visual artist and Queer ASL founder and instructor
update: The artwork from this project will be used as educational resources and fundraising purposes by the Canadian Deafblind Association, and the BC Provincial Outreach Program for Students with Deafblindness.
*Article 19- Living independently and being included in the community
States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that: (a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement; – 14 – (b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community; (c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to