Living Deafblind: A modern-historical exploration of disability (Part 3)

PEOPLE WITH DISABILITIES

In this book, I will be speaking very generally about people with disabilities, but I wish to clarify a few specific populations that I will be focusing on in some sections with which I have experience. For the purposes of simplicity, I have admitted my own basis to deafblind, chronic pain, autism populations. So, I am referring to those with sensorial, physical, emotional, or intellectual disabilities. My coverage of disability in this manuscript is all-encompassing to all who relate. I believe there is a distinct similarity between those with childhood and lifelong disabilities and those who are traumatized: both cases create a neurological divergence. Thus, on a hierarchal level above, neurodiversity covers all the brains that have developed contrary to how a person is supposed if they had all their faculties and a bubble wrapped life. But that is simply not realistic. Some are lucky and others count their luck.

Every organization and government seems to have their own working definition of disability. I will not get into all of them here. But suffice for me to implore you to ask any organization with whom you interact what is their definition. It is complex. For example, the term, "multiple impairments" was only recognized in by the Canadian Revenue Agency only within the last 10 years. Defining “children with complex health needs” and synonymous terms is within the last one to three years worldwide. So, all of this jargon surrounding disability is still relatively new and in very fluid motion.

In literature there are two common “models” of disability: social and medical. In reality, disability simply has an interdisciplinary nature. Disability is so damned subjective that it is absolutely in the eye of the beholder. Disability starts very young for some and for others it happens later in life. I am talking about disability for life in this article, from birth onward. I cannot help but look at the spectrum of life. All of history matter as much s today. Especially if we want to have a desirable future. We have gone from walking to the post office to send a telegram to direct messaging with a device that fits in our pockets. In all stories, there is an element of government intervention, learning, advocacy, and persistence.

An article surfaced from 2017 on Disability Identity. It was so spot on to a lot of research I found too: “individuals with disabilities are dually navigating both the internalized understanding of said impairment or label in addition to society’s broader meaning making around this disability” (page 18, Forber-Pratt, Lyew, Mueller, Samples, 2017). The authors highlighted the important role that able-bodied professionals have when working with individuals with disabilities as it is a developmental process that needs to be well supported wherever possible. Health professionals are the most consistent people in the lives of most people with disabilities.

DEAFBLIND POPULATION

The absolute best description of what could possibly be occurring with the other senses in a person who is blind is from the 1951 edition of the Book of Knowledge in a “wonder questions” section found on page 1638 of volume 5 &6:

“Why are blind people so quick at hearing?

The simplest answer to this question would be to say that blind people listen more attentively to the sounds around them. An ordinary person who has all the senses of sight, smell, touch, hearing and taste receives a tremendous number of impressions from all sorts of sources which are conveyed to the brain by special nerves and give him the ideas that he identifies with all those sensations. Now, if one of the organs of the senses, such as the eyes cannot receive impressions from the outside world, the brain has fewer message to attend to, and so has more time for the rest.

Thus, in a blind person there are no means of getting all the information that comes to an ordinary person through sight. If he wants to know how near he is approaching somebody walking toward him, the best means he has of judging that is by listening to the sound of the other person’s footstep. He cannot see the distance that separates him and the other person. In this way he forms a habit of listening intensely for all the sounds around him; and so, we find that blind people become extremely quick at hearing. In other words, their sense of hearing is very highly educated”.

Of course, the population nearest to my own characteristics is the deafblind population. In Canada, 11 persons per 100,000 persons live with deafblindness (Watter, Owens, & Munroe, 2004). However, using a broader definition of deafblindness, which means impairment but not necessarily complete loss the numbers become 232 persons per 100,000. Age ranges varied with seniors (70%), under the age 45 (15%), and ages 45 to 64 (15%). Individuals who are deafbind are categorized into deafblindness, dual sensory impairment, dual sensory loss, combined vision and hearing loss and more (Larsen & Damen, 2014). Distinctions are made between early onset (or congenital) and later in life acquisition. For example, communication and language acquisition is often considered to be more severe with early onset (Larsen & Damen, 2014). Early onset is considered before two years old. Larsen and Damen consider DB be considered as a spectrum disorder with four components: 1) sensory medical and functional component, 2) an ability or functioning component as well as both 3) a chronological and 4) developmental onset component (p. 2575). Therefore, Larsen and Damen suggest that in articles that refer to the deafblind population, it should be made clear: the definition used, the aetiology, severity of sensory impairment, mobility, access to information & communication, age of onset, communicative development at onset. In 1995 the Department of Health in the UK established a legal definition of deafblindness: ‘A person is regarded as deafblind if their combined sight and hearing impairment cause difficulties with communication, access to information and mobility. This includes people with a progressive sight and hearing loss.’ (Sense, 2019).

The Encyclopedia Britannica (Hoffman, 2016) describes this population in detail. The causes of deafblindness vary among the population. Premature birth, genetic syndromes, and illness such as rubella are common causes. It could also be resulting from a combination of accident with one sense and illness of the other. This population has the most diverse communication methods, often in combinations. They associate with communities related to one or both of their impairments and mainstream society. Due to the diversity, individuals who become deafblind later in life may feel disoriented. The article finished by saying that the community of their choice is based on accepted communication method of the community.

Individuals who experience early on-set deafblindness are often developmentally affected, worse so with severe impairments. It is assumed that the two impairments inhibit the compensation of the other. It can affect the cognitive, language, social, and emotional development. If the sensory impairment occurs before two years old, there is a loss of basic learned skills required in life. They only develop through the senses that are not impaired. Therefore, there is a lack of access to sensorial information. They are often delayed to their peers. On the upside, these individuals develop mental representation skills. Also, with the appropriate environments, in which they have alternative access to information, they can thrive. Jan Van Dijk (1937-) is renowned for his work with deaf blind children and the link to rubella. He proposes that is the inability to organize senses of vision and hearing that hinders someone who is deafblind. Through ordered information, the child can anticipate and interact with the information. The key is not creating labels but the social interaction between two people having a conversation about objects, activities and emotions (Tait, 2014).