Disability Acceptance and Access
IMAGE: PHOTO OF PLAY VIDOE BUTTON
At almost any minute of any day, your life could change drastically. Our bodies are fragile, our destinies determined second-by-second. Snap your fingers. That’s how suddenly what you have come to expect for yourself, or a member of your family, could change as the result of an illness or accident. What would it mean in terms of work, mobility, relationship, identity? How quickly or slowly would you adapt to a drastically new state of reality?
The Americans with Disabilities Act (ADA) was introduced into Congress in 1988 and finally signed into law July 26, 1990. It prohibits discrimination against people with disabilities, requires that reasonable accommodation be made for employees, and requires "accessibility requirements on public accommodations". Such accommodations are often thought of as ramps and elevators, but also includes assistive technologies. As technology is advancing at an ever-increasing pace, it is now time to revisit rights for those whose minds and bodies are non-ordinary, who have been impacted by illness, accident or disease. It is time to think of access beyond ramps and curbs and think of access in terms of fuller participation in society.
This is a difficult post for me to write, because I have limited personal experience. I want to be sensitive to the fact that "disability" is a social issue more than a personal label. "Disability, like race, ethnicity, and culture, is a term whose definition is culturally derived ..." That said, this is an important topic for transhumanists. As with all innovations, biotechnology is not without its unintended consequences. An emphasis on "assisting" others may easily result in social exacerbation of one "right" way of thinking and being, development of a cultural messiah complex, an emphasis on perfection, etc. Already we see this in the prevalence of images of bodies within transhuman Internet posts of people who are young, thin and white. As technology seeks to remove physical obstacles, the transhumanist community must be on guard to broaden rather than narrow our understanding of, and expectations for, what we think of as "normal." The conversation surrounding "healthy" is often about a bodily norm, ignoring other dimensions of health, such as mental, spiritual, social and relational health. Even as we seek to go beyond the limitations of biology, transhumanism would benefit from understanding that there is a certain perfection that comes only from the imperfect. From a faith perspective, health is often judged at the community rather than the individual level. In this context, a person who may be physically or mentally challenged, may serve at the community level by helping a higher level of social empathy to manifest. Greater access and visibility, therefore, for those with physical or mental challenges benefits not simply the individuals but also our social sphere.
Technological solutions for a wide variety of disabilities and chronic problems are emerging. The technologies already in or near development and commercialization include BCI, shifting of sensory inputs for non-ordinary perception, robotic exoskeletons, insulin pumps and improved prostheses. They promise to be like the miracles of Jesus: allowing the deaf to hear, the blind to see, the lame and maimed to walk, the mentally ill to get relief from the demons of biochemistry. Far from the scare stories of mad scientists and Nazi doctors, the science behind the transhuman age is nothing short of a godsend.
To truly fulfill the promise of the coming biotechnology revolution though, we must think in terms of a new kind of access. Within the gospel stories of Jesus’ healing miracles is a story of social justice. The healing miracles are, themselves, parables about people on the margins being made whole so that they may be recognized by society. The healings of hearing and sight and hemorrhage were stories of reintegration, denial of stigma, and restoring of self-hood.
The technology alone will not be enough to fulfill the promise of transfiguration. We must also innovate business models to ensure that those who need the technology can gain access to it. Access also means that we recognize that vagaries of accident or illness happen to families and not individuals. Along with technology solutions, we need innovation in terms of care management, attending to physical, logistical, mental health and spiritual needs.
Access also means ensuring that those who will be served by the innovations are collaborating in the design and development. The users of biotech solutions should be not simply “study subjects” but design team consultants: pointing out bias, providing perspective. Empowerment comes, in part, by being part of the creation of solutions. Voice, visibility and the ability to co-create solutions is as important as the technology.
Access, too, means full access to society. Access is paving ways for people to share their gifts, experience and hearts. It entails meeting people where they are, leveraging their existing abilities and providing a path into society. The above video is an excellent example of technology that helps create a path for access.
Technology is making amazing strides in changing our lives. Technologists and their finders, though, most often speak in terms of providing solutions and perceive “their users” as receiving the benefits. While the technology is, indeed, a blessing, society will be at its healthiest when those creating and financing the innovations see themselves as Servant Leaders rather than as Saviors.