Differences Matter: Innovations and people with disabilities

Tuesday, September 20, 2011

Gregor Wolbring, University of Calgary
Guest Contributor

This entry is part of the CFHSS’s VP Equity Issues series on diversity, creativity and innovation / diversité, innovation et créativité.

Innovation, according to Wikipedia, “generally refers to the creation of better or more effective products, processes, technologies, or ideas that are accepted by markets, governments, and society.”  Many of these innovations in scientific and technological products as well as novel ideas and theoretical concepts have implications for people with disabilities.

Today, we are witnessing extraordinary innovations in scientific and technological products and technologies as well as ideas in fine arts, the social sciences and humanities. There are, for example, innovative approaches to performing fine arts, and in the kinds of tools used for artistic expressions. As well, there is a large and growing body of literature on innovative approaches in higher education. In fact, for the past decades UNESCO has supported various studies of new trends in the areas of teaching methods, administration, and planning and financing in post-secondary education.

Just this week, the Equality Challenge Unit in the United Kingdom released, Enabling equality: furthering disability equality for staff in higher education,” which highlights ten areas that influence the experiences of persons with disabilities in higher education.  Among these are included the need for greater engagement of faculty and students with disabilities, experiences of discrimination and harassment but, also, some progress in policy practices. There are other notable trends in the area of education for sustainable development. There is a burgeoning literature on innovative approaches to promoting  human rights, and on the “ingredients for innovation” in public engagement. And, o f course, there are theoretical and methodological innovations which play out on a daily basis among scholars in academe and in the broader society. In other word, innovation, across all spheres of social life, is all around us, all the time.

As a group, people with disabilities are influenced by nearly every discourse about innovation. Yet, paradoxically, they are fairly invisible within these discourses, including in S&T priority setting agendas. This is especially true of persons with disabilities who do not perceive themselves as ‘defective’ or somehow lacking. This invisibility extends to geoengineering or synthetic biology discourses, as well as in climate change discourses where persons with disabilities are marked more by a climate of neglect. Another issue faced by disabled people, particularly in the developing world, was made by Michael Berger in Nanotechnology’s benefits for disabled people:

While these are technical solutions to medical issues, and also a potential path towards transhumanist dreams, there is a number of social issues surrounding them that are rarely discussed. For instance, some 180 million young people between the ages of 10-24 live with a physical, sensory, intellectual or mental health disability significant enough to make a difference in their daily lives (see: "Adolescents and youth with disabilities"). The vast majority of these young people, some 150 million (80%) live in the developing world. They have limited access to education, employment and basic health care, and generally experience profound economic and social exclusion.

There are at least seven notable areas of innovations that are linked to people with disabilities.

First, there is the development of tools – such as wheelchairs and hearing aids – which allow people with disabilities to adapt to the environment in which they live. Second, there are adaptations of the environment that make it easier for people with disabilities to navigate their environment including, for example, ramps and universal design of physical environments.  A third area is the development of tools – such as ultrasound, prenatal testing and preimplantation –  that  are used to diagnose the part of a person’s biological reality seen by some people as deficient, defective or impaired. A fourth and related area relevant to persons with disabilities is the development of tools that would enable so-called ‘preventative measures’ (avoiding the embryo with the ‘undesired’ characteristic or terminating a pregnancy if the fetus has an ‘undesired’ characteristic) as well as efforts to ‘correct’ or ‘repair’ perceived defects through in utero surgery, gene therapy or interventions on the neonatal level. A fifth  area of  relevant innovations is the development of bodily assistive devices that enable people with disabilities to have abilities that may outperform the ‘normal’ body, such as brain machine interfaces and sub-vocal speech devices.

Other areas of innovation we should not overlook are in the social and theoretical spheres. A sixth area of innovations encompasses the societal structure and relational dynamics. These, in turn, define the extent to which disabled people are provided the opportunity to participate in social, cultural, and political spheres of everyday life. This area includes how groups that serve people with disabilities constantly have to reinvent themselves to survive changing political and social dynamics such as how to provide high quality service with less staff; and how to generate revenue in an efficient way to make up shortfalls of government funding. It also includes advocacy groups of people with disabilities who have to struggle to find resources to advocate for the changes needed to ensure that people with disabilities can partake equitably in all aspects of society.

And, finally, a seventh area of note includes innovation in theories, modes of inquiry, and analysis of the world. One example is the theory and concept of ableism, which allows us to understand the world around us in totally new ways. In the 1960s-1970s, the disabled people community and the nascent academic field of disability studies developed the theory of ableism to interpret the attitudes, experiences and social realities encountered by disabled people. The concept of ableism is still very fresh and it self-consciously enables us to interpret the world through the lens of the ability preferences we exhibit.  It is applicable to nearly every social discourse (e.g.  energy, health, body enhancement beyond the ‘normal’, education).  Indeed I have argued in a previous blog that I see ableism as a theoretical lens through which we analyze disablements (as in social discrimination) as a gift of the disability community to the rest of the academy and, indeed, to human kind.

Despite their relevance to people with disabilities, innovative products rarely are developed with universal design in mind. Cutting edge products meant for the masses constantly must be modified after the fact to make them accessible to people with different non-normative abilities. Although there are some interesting accessibility initiatives such as the Center for Cognitive Ubiquitous Computing (CUbiC)  at Arizona State University, or Microsoft , or Apple, the reality is that many products never become accessible and others constantly play catch-up. Websites, for example, are still fairly limited for the blind, while video is often useless for the deaf due to the absence of subtitles or close captioning (there are some good efforts).

Various lists of innovative products exist on the Internet.  However, very few innovation products developed for people with disabilities (for example, Braille), make these lists.  What makes the general innovation hit-lists are medical products. Yet, there are so many more innovative products related to people with disabilities. The website has a list of innovations, including 53 for the  blind, 21 for the deaf, and 16 by and for the disabled. And then there is Amazing Innovation: Mobile Apps for the Disabled.

The tenuous economic situation of organizations that serve people with disabilities is such that they must face constant innovation or risk extinction. In such cases, innovations are often reactive, and driven by negative social developments such as cut in funding.  Changing funding support structures and societal expectations have forced disability service and advocacy organizations to rethink how they operate. (For example, there is the resource “Innovative Service Models and Practices in the Disability Sector of Western Australia and the innovation: pilot projects such as the wounded warrior project of the National Organization on Disability, and the Creating Change - Innovations in the World of Disability by the Ashoka organization).

One area where disabled people tend to be the main focus is therapeutic products such as bodily assistive devices. Therapeutic interventions (developed to regain expected body functioning through iterative advancements) increasingly allows the wearer to outperform the species-typical body.

Brain Machine Interfaces (BMI) is one class of innovative products that are under development with the aim of helping people with disabilities.  I covered the scientific advancements around BMI in a 2006 and 2009  column I wrote for In the 2006 column I predicted that, “they [BMI] will also be used by the non-disabled as a means to control their environment – especially if the devices are non-invasive and no implants are needed.” In the 2009 column I highlighted some writings around the ethics of BMI and also that, “there has not been much public discussion of the implications of brain machine interfaces; the amount of public R&D funding they receive; and control, and access to these devices.”

Various countries develop BMI’s such as Australia, Austria, China, Finland, Germany, Japan, Switzerland, the United States, the United Kingdom, and Taiwan. On IEEE Spectrum, a  June 2011 article covers the problem of the 20% of nonperformers . One from  July 2011 highlights research and funding to universities, including the fact that the, “University of Washington has announced that it will receive five years of funding – $18.5 million in total – from the National Science Foundation to establish a new center for neural engineering on the Seattle campus. San Diego State University and MIT, among others, will partner in a fresh push to give the human brain control over computers and robotic limbs.”

There are two main approaches to brain machine interfaces. Some investigators in Switzerland, Taiwan and Canada, use non-invasive procedures to advance brain machine interfaces. Others such as in Japan use highly invasive procedures to develop new bionic limbs to be controlled via brain-mounted sensors.

News of bionic and artificial organ technologies is appearing at an ever increasing rate. We have the eyeborg, artificial retina, artificial cornea and augmented realities in contact lenses. As well, 20,000 -people worldwide have bionic ears. The robo-ankle, bionic fingers,  the i-Limb Bionic Hand, the Rheo-Knee, the bionic legs with artificial intelligence,  all highlight the human computer interface. Some scientists have created artificial bones using inkjet printing. Some are now transplanting artificial lymph nodes.  “Nanobionics” – the boundaries between electronics and biology – are becoming increasingly fuzzy.

The so called non-therapeutic use of therapeutic devices increasingly is discussed from various angles such as ethics, health, and utility.  Questions raised by disability studies draw attention to the extent to which disabled people actually shape these products, and whether they will be the main focus in the future. Many of these devices are starting to be used for non therapeutic purposes such as Emotive sells, a brain machine interface for gaming purposes. Indeed, we may question how much longer the impact of bodily assistive devices will be confined to disabled people, given the desire of so called non-disabled people to use them.

What this all tells us is that there is an often overlooked connection between diversity, creativity and innovation.  What we call innovation happens in many spheres and on many levels, and despite a general invisibility, many of the innovative products, processes, ideas and theories are relevant to, and used by, people with disabilities.

Gregor Wolbring is an assistant professor in the Department of Community Health Sciences, Program in Community Rehabilitation and Disability Studies, University of Calgary; and past-president of the Canadian Disability Studies Association. Email: gwolbrin [at] ucalgary [dot] ca


Equity Matters


Ableism and disabilityEquity and diversity