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Stephen Hawking and Networks in Disability

(photo via Wired, NASA, Flickr)

Stephen Hawking’s birthday was yesterday, January 8th.  Hawking is certainly the most famous scientist with disabilities alive today, and arguably the most celebrated person  with disabilities in history. With his motorized wheelchair and electronic voicebox, he is an iconic figure.

Wired has a fascinating article on Dr. Hawking, how he does his work, and what his life can tell us about both ‘ordinary’ scientists and people with disabilities. The full thing is worth reading, but I want to pull out some paragraphs which express what I see in APACT more elegantly than I can put it myself.

In one version of Hawking’s eulogistic story, we praise the smartest person in the world, the brilliant physicist, one of the greatest cosmologists of our time. He fits perfectly well with our conception of how science and its heroes work: To be a genius all one needs is a powerful – a “beautiful” – mind. And indeed, because of his disability, Hawking embodies the mythical figure capable of grasping the ultimate laws of the universe with nothing but the sheer strength of his reasoning: He can’t move his body, so everything must be in his mind. What else would a theoretical physicist need?

But in another version of Hawking’s story, we notice that he is more “incorporated” than any other scientist, let alone human being. He is delegated across numerous other bodies: technicians, students, assistants, and of course, machines. Hawking’s “genius,” far from being the product of his mind alone, is in fact profoundly located, material, and collective in nature… What I discovered was that to understand Hawking, you had to understand the people and the machines without whom he would be unable to act and think; you had to understand the ways in which these entities augmented and amplified Hawking’s competencies.

Hawking’s persona, his disability, and his embodied network thus becomes a window on our machines, the nature of work, and even our representation of scientific heroes. Popular media shows us that Hawking is a pure, isolated, once-in-a-lifetime genius; ethnographic analysis shows us that Hawking is not that different from other scientists even though he has a disability. In fact, it’s precisely because of his disability that we get to see how all scientists work … and how the entire world will work one day.

Because, surrounded as we are by our world of technology and digital information, aren’t we all disabled? We, like Hawking… are unable to think and complete the results of our thoughts without being attached to a network of people, instruments, machines – and the living laboratories through which it is all distributed

Indeed.

Context and Disability

Via IGERT fellow Ramin Tadayon

What exactly is a “person with a disability”? The irony of the term begs discussion. In the broadest sense of the word, you could say that “disability” means “not being able to do (something)”. What, then, do we call the person who has no disability? The person who is able to do everything, who has no limitations and no hindrances in life. Perfect. Omnipotent. Impeccable. A reasonable assumption to make, one could suppose. It would follow logically that a person with a disability is “one who is imperfect”. Anyone, it seems, could then reflect back upon their own lives and, without a tremendous amount of difficulty, fit themselves into such a definition. How ironic, that when we strictly base our definitions of disability to a format that could fit the broadest population possible, we find that it equates to the definition of humanity. Yet society, to this day, uses the term “people with disabilities” to refer to some portion of the whole, not the whole itself. One could say this is so because the disabilities these individuals possess affect their daily living to an extent where they require support. Very well. But why do these individuals require support? What is it that prevents them from “being able”? Why is assistive technology necessary?

Simply put, it is context. Disability cannot exist without it. One whose vision is impaired has no disability in a pitch black room full of people. One whose hearing is impaired can hear silence as perfectly as anyone without such an impairment. You can see where I am going with this: in the right context, every individual possesses a disability. Those disabilities which are not yet included in the “official” list of disabilities are those for which the context is limited in appearance, or is hidden from the eyes of society. Now we arrive at an interesting definition for a “person with a disability”, as modern society sees it. When the context is apparent in public, when the context is an activity of daily living, only then does society tend to separate an individual from its preconception of “normal”, and only then does the individual have to fight the lifelong struggle for inclusion, the daily necessity of advocacy, the need to redefine one’s self with “the rest”. These individuals seek, to as great an extent as is possible, to replace the wrong context with the right one. To do so, they strive to redefine their environment, or, when such a task is nigh impossible, to work within the limitations placed upon them, proving that it is context, in fact, which places limitations on these limitations. So powerful is this concept that we can paint someone’s portrait in an entirely different palette, given a new context.

 

Like many who were not born in the United States, I struggled in my first few years in this country. The area of my struggle, like many, was communication. I could not communicate because I could not speak English. My main language at the time was Farsi, the language of my country of birth. Clearly, however, since I was in a different country, in a different cultural context, my language became a disability. I was separated from English speaking children, and the focus of my first year of education was to support my skills in English. Mathematics, however, was a strong point of mine, and so was drawing. I could sketch quite clearly what was on my mind, and I could speak the international language of mathematics quite well. In both of these domains, the context of culture was removed. I made friends simply by sharing my art, or by helping them with math problems. I achieved inclusion this way, as simple and trivial as it may seem, until I could speak English well enough that the context was no longer an issue.

When we speak of disabilities in the United States, it would seem absurd to claim that people from almost all the other countries in the world have a communication disability. However, we would not be able to communicate with these individuals, at least not with the ease at which we can speak with other English-speakers, due to differences in spoken language, under a cultural context. We clearly recognize that context, however, and work around it. That is why this country is recognized for its diversity in culture and backgrounds, and that is why we typically do not classify foreigners, on the basis of their countries of origin, as “people with disabilities”. One can see, then, why the definition of “disability”, and the classification of people was “people with disabilities”, are more complex than the generalizations of society may have us believe. One can also see why inclusion in the community and in society is naturally a goal of many individuals who are given such a classification, and, in consequence, why context is such an important issue to address in the struggle for inclusion.

Room for Debate: How can assistive technologies be made better?

How can assistive technologies be made better?

The World Health Organization defines disability as an “umbrella term covering impairments, activity limitations, and participation restrictions…  Disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.” Assistive technologies are most broadly devices, accommodations, and strategies which help people with disabilities find ways to overcome impairments, limitations, and restrictions. However, many people with disabilities are not using assistive technologies which might help them, either because they cannot afford the technologies, do not know about them, or the technologies don’t exist.  What are you doing as part of APAcT-IGERT to improve accessible technologies?

Study how Successful Scientists use Assistive Technology
Heather Pacheco

People’s experiences, throughout all aspects of their lives, contribute to how they understand and interpret the world around them and how they make choices.  These experiences construct, among many things, our perceptions, intuitions, ideals, values, knowledge and identities. My background is in science education and for much of my career I have focused on how students construct knowledge in the science classroom.   More recently, as a doctoral student in science education, I have focused on developing an understanding of how people learn, how people are motivated to choose to engage in cognitively challenging endeavors, such as college, and why some people persist in careers that continue along their academic trajectories. My dissertation work centers on the focus of this blog topic: How can assistive technologies (AT) be made better? I am studying the roles AT played in the choice, participation and retention of science, technology, engineering and mathematics (STEM) professionals with sensory and/or orthopedic disabilities in their STEM fields.  By identifying how highly successful individuals, who are also AT users, interpret and report on the functions and roles of AT in their experiences, we can begin to develop an understanding of which are the most critical technologies to success in STEM for individuals with disabilities and how these technologies have been and are being used by individuals with disabilities to support their engagement in STEM careers.  In turn, this enhanced understanding of roles AT play in STEM careers will inform STEM education AT policy with recommendations to support science literacy for all Americans, targeting the key elements of 21st Century Learning Skills and the implementation and access to Next Generation of Science Standards (NGSS) for all students.

The problem with “Improvements”
Denise Baker

I think most would accept that broad changes and improvements in assistive technologies (AT) are needed in order to allow users of AT to adapt to changing physical environments, social structures, and technological opportunities. However, the notion of “disability” is a social construct, based on cultural norms, that was set in place much too long ago and this antiquated concept makes the notion of “improvements” a highly complex problem. When we consider that wearing glasses was once classified as a physical disability it is a bit easier to think about how some “disabilities” of the past are not considered disabling at all today (you can even be a fighter pilot now). Improving AT is important for some functional tasks and to allow greater choice for those who wish to use AT, but some circumstances that are considered a disability may simply require a shift in the physical environment for improvement, in other cases it might require a shift in the observer’s perspective. Consider this, if I ask whether a foreign traveller who arrives in the US unable to speak English, should be considered disabled, the answer will likely be “no”, but if I state that the traveller’s native “tongue” is sign language the answer might “corrected” to a “yes.” This is bit removed in some respects from the topic of improving AT, but it exemplifies the “improvement” problem. We first need to ask whether the deficiency lies within the design and function of the AT, the environment in which the AT is to be used, or the attitudes of external sources not directly impacted by the ostensible impairment.

I think my goal here at APAcT is to investigate how external attitudes of the observer and internal attitudes associated with AT can impact a person’s quality of life. To do this it will also require investigating how design, functionality, and environment interact to create the perception of “good” or “bad” technology. Through this we can begin to understand where the greatest amount of energy should be devoted in terms of answering the questions “How can assistive technologies be made better?” In fact, we could start now by reframing the question and asking, “How can we improve the lives of those who use assistive technologies?” Because, in reality these two questions are very different.

Games for Stroke Rehabilitation
David Guffrey

What am I doing as part of the APAcT-IGERT in order to further the development and advancement of accessible technologies? The answer to this question is two-fold. With regards to the service learning segment of the fellowship, I will be working in a hospital setting as part of an interdisciplinary team consisting of various clinical and engineering professionals with the goal of developing gaming as the next stage in clinical and take-home rehabilitation for stroke survivors. This project will include the perspective of the rehabilitation clientele every step of the way in order to ensure the product developed maintains their interest such that they are motivated to perform their rehabilitation exercises and maintain their regiment. In-home gaming opens the door as well to clinicians having significantly more substantial data sets at their disposal than previously. These data sets can provide better insight into how a person performs at home and not just in the clinic, bringing to light nuances that might have been neglected when a patient is interviewed. In addition, gaming technology is low cost and easy to distribute, thus enabling clinics and individuals of varying resources to provide equitable care regiments to their clients. Lastly, the APAcT-IGERT program has provided me the opportunity to continue and expand upon what I have started in my service learning and research project experiences and adapt it towards the pursuit of a career as a clinical biomedical rehabilitation engineer. From this position, I envision furthering the advancement of new techniques and technologies for care that are not only effective, but universal and accessible as well.

Familiarity Breeds Use.  Use Breeds Engagement.
Heather Ross

From my perspective as a health care provider and researcher in interdisciplinary teams, I often focus on assistive technologies that facilitate communication for people who otherwise have a sensory or expressive disability.  As I consider the ways that these assistive technologies do or do not enter into routine patterns of use for the interdisciplinary team, I think of the awareness – or more commonly lack of awareness – that so many of my colleagues have about assistive technologies for communication.  With the growth of interdisciplinary health care teams including patients and caregivers as integral members of the team, assistive technologies must no longer solely be the bailiwick of disability experts.  Particularly as health information technologies gain traction in clinical practice, the most important thing we can do to improve assistive technologies is to know that they exist, and then use them robustly with our patients who need the communication assistance.

Consider one of the most common communication disabilities that I encounter among my patient population: blindness.  Most of the education materials that I use in my practice are either printed or Internet-based, designed to be read.  Therefore, I tend to not offer these written materials – not translated into Braille – to my patients who are blind.  I have seen this pattern repeated by my colleagues over the years, ignorant of accessible technologies for blind people beyond Braille.  However, if my colleagues and I were attuned to screen reader technologies that make digital media accessible to our patients, we could offer educational materials more widely to enhance our patitents’ knowledge of their disease processes, and improve their care overall.

If assistive communication technologies are integrated as applications or appliances in the context of mainstream communication platforms, they become more accessible to a broad spectrum of people outside of the defined disability community.  When assistive communication technologies are part of familiar devices, such as smart phones, tablets, and laptop computers, they are transformed from foreign disability technology to familiar “apps”.  Familiarity breeds use.  Use breeds engagement.  And engagement breeds improved care.

What We’re About

People with disabilities are the largest minority; about 20% of Americans have a disability.  When we think of people with disabilities, images that may come to mind are of the devices that some people with disabilities use: assistive technologies. These may include wheelchairs, white canes, hearing aids, prosthetic limbs, and companion animals. Throughout recent history, special classrooms and courses of therapy are all technologies that people with disabilities have used and in some cases, continue to utilize. In our increasingly technological world, change is occurring at a rapid rate, and new possibilities for assistance are emerging.

Our research program is about making these new possibilities real.  We’re an interdisciplinary group of graduate students working to improve the design and implementation of assistive technologies. We are guided by the notion of person-centeredness; the idea that people should have the ability to customize assistive technologies to their needs and desires, and that people with disabilities should direct every step of the research and design processes.

In the weeks to come, you’ll be hearing from different members of our program about the many ideas, topics, and themes we are discovering as we conduct research within the area of disabilities.  We’re here to start a conversation about disabilities, technology, cutting-edge research, and the role of communities in this process.