Living Deafblind: A modern-historical exploration of disability (Part 1)

INTRODUCTION

Anne Sullivan truly inspired me and entranced me in her life including her accomplishments. She found a way to communicate so eloquently with the world in her letters and speech. Of utmost inspiration to me is her valedictorian address to the Perkins school for the blind in 1886, she said that "We can educate ourselves; we can, by thought and perseverance, develop all the powers and capacities entrusted to us, and build for ourselves true and noble characters. Because we can, we must"[1]. Anne Sullivan was a woman with complex social and health conditions who taught her deafblind ward, Helen Keller, language to communicate (verbal, physical, and written). Their history takes place in the United States around the 1900s. Her story led me to taking a look at disability through history and how far we have (or not) come in history in the treatment and experiences of people with disabilities in North America.

I will be elaborating on the various information landscapes that are regularly negotiated in life regardless of historical timeline: living with disability including education, employment, transferable skills. financial, health, information, patient, and social arenas. The literature presented here will demonstrates the models that anyone can easily employ in any interaction with children with complex health needs. This book is more than personal reflection, it is a method of releasing my time spent with amazing research teams as a doctoral librarian on defining the concept of Children with Complex Health Conditions (CCHC). I send a special thank you to Shelley Doucet and Rima Azar and their amazing teams. Everything presented here is in light of research that I read while defining who are children with complex health needs. In completing the conceptual analysis[2] and other systematic reviews[3],[4],[5], I screened tens of thousands of research articles and read thousands of full text articles. I always felt that disability fell into a grey area in their research and so I present in this manuscript. Even after putting down the pen officially, I have continued working on this idea – I could not let any of it go to waste.

In the third year of my doctorate, after my Uncle ended his own life by fire, I picked up a biography on Anne Sullivan - it was the very first time I felt I could relate to someone historical. I have experienced intense isolation and depression in my life, due to my disabilities and life circumstances. I have resolved in my heart that everyone around me really did everything they thought they could for me growing up and my heart will always remember that. Now, as an adult, I can use these experiences and knowledge to help others. I was born in the early 1980s, in a smaller part of Canada, where cultural norms are delayed. I identify way more with Gen-X than millennials and had a lot older generation influence. I also realize that I am telling a story to prepare young ones of what lies ahead as adults to help paint a picture of what is has come to pass. All the while, also hopefully making someone feel less alone and isolated in their world. Personally, I hope that today’s children with complex heath conditions will grow up with the ability to self-culture in ways that allows them to flourish in life without the isolation and vulnerability that is experienced by many people who have disabilities, suffer from chronic health conditions, and face the likely development of mental issues due to disabilities and so many more. I truly believe there is always a way to thrive in life: just have to figure it out. Out of simply wanting to figure it out, you know that you always will, each and every time. Let me show you how.

It took me a while to figure out how one can explore the concept of identify in disability when there are few that “make it” and historical figures are difficult to locate with disabilities. I came up with the idea of picking a historical figure I admire to look at from the outside and tell my own disability identity story. I created a way to time travel, to create multiple dimensions to best explore identity. Time travel in the science fiction fashion is yet proven. That said, time travel happens every day anyway: through books. When we read, we travel to another time and dimension. While each book is an experience in time travel for the reader, not every book actual involves time travel. This book uses time to compare, contrast and learn from two points of history: around the 1900s and around year 2000. When you read this book, you are creating a third, a perfect trifecta of points of view. I do not know you or your situation, but rest assured I wish you the best in your life and hope reading this book constructively influences your own perspective of your use of technology, your perspective on struggles with disability, and living life well despite it all. Hold on, let me turn around that kind of ableist dialogue. Rather, I say living well while maximizing it all!

APPLICABLE THEORIES IN SOCIOLOGY & LIBRARIANSHIP

What’s your identity? Every marginalized person is asked to “identify” on self-declaration forms. The first time I was asked to identify as disabled was when I was applying for bursaries and scholarships at the end of high school. I remember one of my first academic encounters with the concept of identity and labelling in undergraduate studies. In my later sociology years, I took many deviance centred courses to better understand the concept. For example, on page 287 of Deutschmann (2002), they use a blind population example to demonstrate a consequence of labelling as per Scott (1969). This view of disability threw me off, I was all of the sudden an imposter: “the disability associated with visual impairment is a learned social role, one in which the individual learns incapacity and dependence” (page 287). Whoa. Hold on.. who the heck teaches incapacity and dependence? How I person identifies depends on the definitions of those around them, which are usually the people on which they depend for support, if not survival. So, you have how the outside world labels you and you have your own internal identify. Fun. Oh, what conflict. I continued in my studies, not understanding the effect this lesson had on my internal dialogue.

Until attending university, disability was simply lived. It was not really identified. In high school, all of the sudden was being asked how my disabilities limit me and how I plan to thrive with disabilities as long as I got x accommodations. The accommodation experiences I had up to this point was a cros-hearing aid system from 1992 (Grade 2) and regular testing with APSEA. I had zero idea how to talk about my disabilities – they just were. I had to ask my doctors who all said I no limitations with my disabilities on all the forms. I had to learn how to apply for government and private funding in various methods. I did get into university where I got into social sciences then later librarianship. It was a baked in process to life that is completely normal and natural. So, I start with where I did in learning about disability: academically. I apologize for this in some ways, yet I wish to normalize some of this vocabulary so that others can learn it without the necessity of university scholarship. Books and self-learning go a very long ways in developing one’s own self-culture. I was a very curious mind, so it really was necessary for me to attend university in order to further my education. Many girls in Lucy Maud Montgomery’s books often had academic pursuits: I was not alone in this Maritimer way of learning – leave my home to pursue higher education and job opportunities Ontario to make better sense of the world only to come back home later feeling even more confused. But, when it all makes sense eventually, positive changes happen.

SENSEMAKING

Really, we all just want to make sense of the world! A commonly encountered theory is Dervin’s Sense-Making. The central activities to sense making are “information seeking, processing, creating and using” (Savolainen, 1993, p. 16). The product of this process is sense. Sense includes explicit knowledge and an individual’s tacit knowledge. Sense is needed when there is a perceived information gap in a given situation. This requires gap-defining and gap-bridging. Sense-Making is sometimes considered a conceptual tool rather than a theory (Tidline, 2005). However, Savolainen (1993) gives an epistemic expansion on sense-making as a theory. Sense-Making gives voice to the users in operationalizing their information-seeking sequence and information needs. According to Dervin, all information is subjective as it is a construction created by human observers. The information seeking and use are processes taken to construct sense. Once an adequate level of sense has been made in the mind of the information user, they can continue on with life (Bates, 2005). This uphill battle happens repeatedly. So, what does it take to make sense of a chaotic world of information? Literacy learning and Resilience. The task for people with disabilities to achieve sense in their worlds is monumental.

Symbolic interactionism focuses on communication, the subjective meaning that people attach to their circumstances, how people help create their social circumstances, and the interactive process in which meanings are handled and modified (Brym & Boutilier, 2001; Gray, 2013). It is through these interactions that people use is to assign value to ideas. Social constructionists assume reality is created through the interactions and beliefs of people; that the reality is a product of the social processes (Neuman, 2003). Social constructionism implicates a shared system of meaning that is generated in a given culture (Brym & Boutilier, 2001). Constructionism is aware that knowledge is constructed by humans by inventing concepts, models and schemas to make sense of experiences which are continuously tested and reconstructed (Schwandt, 2000). Symbolic interaction is similar in that meaning is constructed based off individual and mutual understandings.

Which brings us to Wegner’s (1998) dimensions of communities of practice: “mutual engagement, a joint negotiated enterprise, and a shared repertoire of negotiable resources” (Holmes & Meyerhoff, 1999, p. 175; House, 2003, p. 572). Of importance here is the “shared repertoire of negotiable resources” which consists primarily of resources which has been constructed through the minds of community and individual. The linguistic resources are negotiated through specialized terminology and linguistic routines. Communities of Practice look at the practice or activities involved in language structure, discourse and interaction patterns (Holmes & Meyerhoff, 1999). These interactions are part of distinct social processes in learning. Indeed, language phenomena are “always embedded with a context of meaning and a context of functionality” (p. 120).

Assigning value to absolutely anything, including communication methods, can only happen once it has been comprehended by oneself. Value can be explained and promoted by outside influences to gain by in on their own values and ideas. The reputation of the provider of the information also affects value of information. Value is also part of the analysis and processing of information as well as facilitation of its application. Value is defined by the benefit to the user, according to Matthews (2013). He refers to this as value-in-use or utility theory. In the utility theory, the effects, benefits and impacts are left aside and focus is placed on the “wants, usefulness, satisfaction, demands, and so forth” (p. 92) of information. The notion of convenience and satisfaction is seen as “the quality of information content is much less important than its convenience” (p. 92). Convenience refers to where to search for information, completing the search process and being satisfied with the source. Herbert Simon (1976) coined the term satisficing in focusing on the theory of convenience and satisfaction users assign to information (Matthews, 2013). Satisficing is that “in decision making, people make a good enough decision to meet their needs and do not necessarily consider all possible, or knowable options” (Bates, 2005, p. 4). In essence, satisficing is based on the Principle of Least Effort. Matthews and Simon both acknowledge information overload as a real barrier for information users and people will take the shortest route possible to get the information, they need to simply achieve the outcome the desire faster.

How a person with disabilities goes about making sense of their world? If people tend to take the shortest route possible, how does this work for people with disabilities who have to double down their efforts to get similar results as a neurotypical person. The deafblind population can easily blend in with society just as much as they can be ostracized, even unintentionally due to the design of the world’s activities. There is a very long history of people with disabilities fighting for par, which Universal Design attempts to achieve. Information and communication technology advances have changed the landscape and tools available to people with disabilities greatly over the years. People with disabilities are more engaged citizens than ever thanks to social media.

MODELS

There are two commonly known disability models: social and medical. According to Goering (2015), most people tend to subscribe to the medical model of disability where “the main disadvantage [many people with disabilities] experience does not stem directly from their bodies, but rather from their unwelcome reception in the world, in terms of how physical structures, institutional norms, and social attitudes exclude and/or denigrate them” (p. 134). In the social model, the greater population and institutions are held accountable for being open minded to providing accommodations and creating more inclusive frameworks. In a world where the disadvantageous experiences by people with disabilities is not due to their bodies but rather with how well they are accepted by accessible physical structures, institutional norms and social attitudes. When the body is seen as the main source of disability, it fits the medical model of disability whereas the social model accounts for accommodations and inclusive environments.

(Video does continue on literacy which I covered fully in the next part!)

[1] To read the full speech, you can read it on the Perkins Institute Website: http://www.perkins.org/history/people/anne-sullivan/valedictory-address. [2] Azar, R., Doucet, S., Horsman, A. R., Charlton, P., Luke, A., Nagel, D. A., ... & Montelpare, W. J. (2020). A concept analysis of children with complex health conditions: implications for research and practice. BMC pediatrics, 20, 1-11. [3] Ward, S., Bélanger, M., Donovan, D., Horsman, A., & Carrier, N. (2015). Correlates, determinants, and effectiveness of childcare educators’ practices and behaviours on preschoolers’ physical activity and eating behaviours: a systematic review protocol. Systematic reviews, 4(1), 1-6. [4] Doucet, S., Curran, J. A., Breneol, S., Luke, A., Dionne, E., Azar, R., ... & Binns, K. (2020). Programmes to support transitions in care for children and youth with complex care needs and their families: a scoping review protocol. BMJ open, 10(6), e033978. [5] Reid, A. E., Doucet, S., Luke, A., Azar, R., & Horsman, A. R. (2019). The impact of patient navigation: a scoping review protocol. JBI Evidence Synthesis, 17(6), 1079-1085.