Nationally-known disability rights leader, John Kemp, spoke at the Center for Neurotechnology (CNT) last month. He emphasized the importance of building awareness of disability perspectives and keeping both wants and needs of technology end-users firmly in mind throughout the device design and development process.
Today, when realistic-looking prosthetic hands with articulating fingers are becoming more widely available, one of the first things many people notice about John Kemp is that he chooses to use prosthetic metal clamps instead of hands.
“These don’t look functional,” Kemp said, holding up his clamps. “They’re highly functional. I wear these all day. I need function. I need reliable and durable equipment.”
Kemp, who was born without arms and legs, uses two leg prostheses in addition to his prosthetic metal hand-clamps. Although he could opt for higher-tech solutions for his upper body, Kemp asserts that the clamps do everything he needs, and they have the added benefit of being more durable than most high-tech prosthetic hands. Plus, he can fix his hand-clamps himself if something breaks, which is important for a man who regularly travels the globe.
“Self-repair is a big deal,” Kemp asserted. “I don’t want to buy or get something that could break more easily than these [gesturing toward his hand-clamps] and cause me not to be able to repair them myself.”
The user experience has to be paramount and has to be respected.
Kemp used his hand-clamps at the CNT’s August Practitioner and End-User Roundtable as a metaphor describing what many in the disability community have experienced when trying to find a prosthetic that works well. High-tech solutions are not necessarily the right choice for everyone, and all too often neurotechnology is designed without carefully assessing the user’s wants and needs first.
“The user experience has to be paramount and has to be respected,” Kemp said. “The engineer has to listen very carefully to what the person [neurotechnology end-user] wants to do and not substitute their judgment or desires for the person. Even if they disagree, they cannot substitute. They have to follow what the person wants to do with their prostheses. It’s about helping a person fulfill their wishes.”
Because of who he is, Kemp’s opinions have weight. Active in the disability community for over 50 years, Kemp is a well-respected national leader and civil rights advocate for people with disabilities. He has garnered a vast array of accomplishments and awards over his long career, including being co-founder of the American Association of People with Disabilities and serving at the top levels of leading disability and nonprofit organizations such as United Cerebral Palsy and Easter Seals. He is a recipient of the 2014 Dole Leadership Prize from the Elizabeth Dole Foundation and a recipient of the 2006 Henry B. Betts Award, which is widely regarded as America’s highest honor for disability leadership and service.
Kemp is currently President and Chief Executive Officer of the Viscardi Center and the Henry Viscardi School, which is a network of non-profit organizations that provide a lifespan of services that educate, employ and empower children and adults with disabilities.
Visibility leads to respect, dignity and accessibility
An important goal Kemp emphasizes in his advocacy work is that of moving public policy toward greater accessibility by raising the public profile of people with disabilities. He cited the LGBTQ community as a potential role model.
“The LGBTQ community connected so well, in my book. They made it very personal, and they talked about how everybody has somebody in their family who is LGBTQ. It’s the same in the disability community,” Kemp said. “The difference [between the LGBTQ and disability communities] is that 17% of people were born with their disabilities and 83% acquired their disabilities sometime after birth. People with disabilities are 16 years older, on average, than non-disabled people, so there’s a bit of age-relatedness to disability.”
Kemp sees this relation between age and disability as being one of the obstacles the disability community faces when trying to be seen, heard and understood by others. He believes fear of aging and the inability to fully understand what life with a disability is really like are key barriers to the normalization of people with disabilities in public life.
The spectrum of human ability is much wider and broader than most people ever probably imagined. Everybody on that spectrum of human ability is entitled to respect and dignity.
“A lot of people equate disability with aging and perceive disability as a loss. They fear sliding into a terribly dependent lifestyle, but that’s not really the life most people with disabilities have,” Kemp said. “I think probably the biggest disability is fear of acquiring a disability. ‘If I don’t talk about it, and I don’t think about it, it’s not going to happen to me.’ It’s simple thinking, ignorance.”
To help combat fear and ignorance by building an awareness of disability perspectives, Kemp recommended people read the book, “Nothing About Us Without Us,” as well as “No Pity.” He also recommended subscribing to email lists and social media feeds of the American Association of People with Disabilities and the National Council on Independent Living to learn about current issues facing the disability community.
“The spectrum of human ability is much wider and broader than most people ever probably imagined. Everybody on that spectrum of human ability is entitled to respect and dignity,” Kemp said. “Hopefully, more people with disabilities will become peers among the engineers and other professionals that are sitting here. They could add a lot of input and insight.”
The future, transhumanism and ethical considerations
The last portion of the roundtable was dedicated to discussing transhumanism, which is the theory that the human race can move beyond its current mental and physical limitations by means of science and technology. Kemp was keenly interested in this topic, and he asked members of the audience, many of who work at the forefront of neurotechnology development, to help deepen his understanding.
You are going to face serious challenges and ethical questions about what is possible, because a lot of things are going to be possible.
The conversation ranged from concerns surrounding artificially-intelligent neural implants and data privacy to ethical and social justice issues surrounding what happens when “normal” becomes considered a medical condition that can be improved upon or “treated” by neurotechnology.
“I sense that you are going to be the generation that will be right in the middle of this transition,” Kemp said, addressing the students in the room. “The choices that people make about moving in this direction [toward transhumanism] are important. You are going to face serious challenges and ethical questions about what is possible, because a lot of things are going to be possible. We’re on the tipping point of something very big.”
Toward the end of the roundtable, one of the attendees asked Kemp if he ever tired of being a disability advocate. Kemp replied, “I’m going to say, probably never. If I’m able to educate some people and change their minds about how they view people with disabilities in a good way, then I’m going to keep on trying to educate. That’s the role that I’ve taken on for myself. I’m going to live it.”