In the summer of 2019 a very rare tumor was discovered growing in my wife’s spinal cord. She woke up one morning that year, three weeks after giving birth to our first child, and could not move her right leg. It was paralyzed. My father, mother, a friend, and I had to carry her down two flights of stairs to the car in order to take her to the hospital. An intense, risky surgery was scheduled to extract the tumor growing in the center of her spinal cord at the base of her neck. She spent 3 months in hospitals recovering and learning how to live life as a quadraplegic person in a wheelchair. Although her once paralyzed leg has recovered some movement, she requires mobility devices like wheelchairs, walkers, and crutches to safely get around. Adaptive driving controls needed to be added to her car. She lives a rich life thanks to advances in science, morality, and technology. 

This was all a serious adjustment, especially for my wife. We are both very active and before the tumor she hiked, ran, fly-fished, surfed, and did all things athletic–to be sure many of these activities can also be done with adaptive tech! For us, prior to her tumor, physical disabilities seemed far away, despite the presence of more than 61 million or 26% of the US population who live with any kind of disability. 13% live with a physical disability. The lessons and transformations for us were profound. 

We have both learned about the vibrant disability community and the systems, enriched by technological and societal progress, that enable my wife to live an abundant life with a physical disability. One aspect among the many transitions we both thought about quite a bit was how different my wife’s story and experience might have been had she merely been born at a different time. Had she lived during nearly any other time period in history, be it 2002, 1992, 1892, or 1592, let alone ancient history, her life would have ended or been replete with suffering. Our son would have grown up without his mother. These takeaways apply to many other physically disabled people, although the benefits are still dispersing and by no means universal, even in prosperous countries. Nevertheless, technological progress and economic growth have been essential to improving the quality of life for the physically disabled and will be essential to continuing to spread those gains.

Progress and Treatment

Societies the world over have come a long way in how they treat socially and medically those with physical disabilities. For most of human history, life with a disability of any kind often resulted in early death, ostracization, abandonment, and isolation. However, the historical records of life for those with physical disabilities are hard to come by the further back in time historians look, likely due to the extreme marginalization of the physically disabled population. For instance, Christian Lears, the author of the book Disabilities and the Disabled in the Roman World: A Social and Cultural History notes the sheer lack of evidence despite the likelihood that a significant portion of the Roman world had a disability.

Treatment of people with disabilities varied across cultures and it wasn’t all negative–there’s evidence that some people with cognitive disabilities were venerated for their abilities. But such positive treatments were more the exception than the norm. Regardless of the attitude of a population or the absence of a historical record, people have always suffered injuries that result in paralysis and disability. Falls, battles, fights, accidents, and many other conditions can result in disabling injuries that are fatal or left people with few treatment options. For instance, a complete spinal cord injury from an accident in 1823 would mean compounded suffering. Such injuries often mean the loss of bowel and bladder control or, if it’s high enough in the spine, the loss of breathing or swallowing reflexes plus total paralysis of all four limbs. Such injuries without modern medical help would likely result in slow painful death over days or weeks or months. If the person managed to survive they would have to rely on family and friends for care and mobility. Babies born with disabilities were often abandoned or did not survive past childhood. 

Taking my wife’s case as an example, were she to live in any time period before 1970, and likely later, an agonizing death as described above is likely what would have happened to her without technological progress and economic growth. My wife’s treatment utilized the best trained neurosurgeons and technology available. MRIs, spinal fusion techniques, microscopic surgery technology, germ theory, and so many more advancements were all involved in merely saving her life. Were her tumor discovered in 2002 we are not sure what the outcome for her would be. Even in 1972, before the invention of the MRI, she would have almost certainly died a slow, painful death as the tumor grew and shut off nerve connection to her legs, arms, and finally her breathing and swallowing reflexes. Were surgery even attempted then, it would have been far more invasive resulting in total or more paralysis if not death. I and those around her would have been helpless bystanders as she slowly lost her bodily functions. I sometimes think about these comparative realities and am thankful for living when I live and also mourn for those who lost loved ones throughout history.

Progress and Mobility

Life after surgery was an adjustment, to put it mildly, but it also demonstrated the profound effects of progress. My wife returned home with two wheelchairs: an electric “power chair” and a manual wheelchair. This last year we added a third power chair that’s more portable for outings. The modern wheelchair was not invented until 1933 and the best existing records of wheelchairs go back to 1655 and the Farffler chair. Both devices were invented by people with a physical disability. Strong, lightweight metals, advances in battery and electric motor technology all benefit those with physical limitations. These technologies are far from perfect and the industry around them often is slow to respond to the needs of its customers. But throughout history those who suffered from a spinal cord injury or amputation had far fewer options. Wheelchairs and adaptive technology were mostly for an elderly population who would use it for only a few years. Now, thanks to advances in medicine and design, someone who has a spinal cord injury at a young age can live a long, full life and use all sorts of technology to be athletes, parents, politicians, travelers, workers, and full participants in society.

Advances in city and architectural design have had profound impacts as well. Prior to the invention of the elevator in 1880, life for any disabled person living in a city meant they had to enlist the help of friends or family to carry them up stairs or crawl up stairs themselves–if they could even get to the building. These factors were compounded by the fact that, prior to the elevator, the cheaper rooms and apartments  were located at the top of buildings because rich people did not want to walk up all those stairs. 

Building materials for cities and towns also had a profound effect on the life of the disabled person. Before concrete and asphalt became widely used in the late 19th century, stone, cobblestone, gravel, and dirt (or mud in the rain) were the common road materials. As my wife and others who use mobility devices can attest, all of those surfaces are less than ideal and often unusable. My wife and I took a very slow, risky crossing of the old cobblestone street in Fells Point, Baltimore with her manual chair. It was an exercise for us both to dodge deep chasms between each very bumpy stone that threatened to bend the wheels of her chair. Sidewalks were likewise an extreme rarity until the 19th century. Until that point, all traffic had to share the same road in urban settings. In such conditions moving slowly or not having the ability to jump out of the way could be fatal. Today, nearly ubiquitous curb cuts and smooth concrete sidewalks were enabled by progress in material technology and urban design. 

Finally and fundamentally, progress has enabled the Great Enrichment which allows families, communities, and governments the mental and economic space to consider the needs of those with physical disabilities. As noted above, living with a physical disability is expensive. Without the lowered cost of materials, the increases in education, the expanded opportunities for careers in science, medicine, social services, and advocacy, many of the gains my wife and others experience would not be possible. We see this consistently in developing countries where life for those with disabilities is more akin to that of a prior era. 

It Can Still Go Very Wrong

It should also be noted that technological and economic progress on their own can result in catastrophe. Eugenics could be considered the application of technology without a moral or ethical compass. People with disabilities were often the first to be targeted for elimination. Indeed, forced sterilization of minorities and those with disabilities in the United States occurred until 1981. The attitude toward eugenics during their height in the 1920s is perhaps best exemplified by Justice Oliver Wendell Holmes Jr. who infamously wrote that “three generations of imbeciles are enough” in the US Supreme Court case “Buck vs. Bell,” which upheld state forced sterilization laws.

This is why there will always remain a need to focus on the dignity of each individual no matter their purported value to the economy or culture. A human being has inherent rights regardless of physical or mental capacity. Whether this perspective is informed from religious or secular sources is beyond the scope of this article. The goal for many people with these different perspectives remains the same. A tangible way to exercise this ethical belief is to recognize the next person you encounter with a disability in a way that makes them feel included. Say hello, acknowledge you see them, and if they ask for help, provide it as best you can. The moment people of any kind are dehumanized and that connection is lost, atrocities we’ve seen before will happen again.

Still a Need for Progress

Of course, despite all the advances, there is still a long way to go. My wife and others who use mobility aids encounter challenges every day. For someone who needs a mobility device, just going to a restaurant in the neighborhood can become a fraught process if it does not incorporate thoughtful design. Those two steps in the restaurant I didn’t think about before? Now those two steps can be the difference between enjoying the restaurant we reserved for our special night out or going somewhere else. Transportation, especially for those who need electric powered chairs which are larger and often weigh more than 200 pounds, require specialized vehicles. Purchasing and fitting a van for operation by someone who does not have the use of their arms is often prohibitively expensive. Public transit is often accessible, yet it can be unreliable and double or triple travel times so that running one errand can take all day. And all this is in the context of a developed nation. People in developing countries face even more challenges and don’t have access to any of these solutions, however imperfect they may be.

All the advances in technologies and techniques that were and are utilized in treating my wife did not develop in a vacuum. They occurred thanks to the medical scientific community, advances in research methods, advocates for the dignity and equal treatment of those with physical disabilities, companies, government officials, and people that saw an opportunity to develop new ways to help those in need. 

There are even more promising technologies and developments on the horizon. Brain computer interfaces have made significant progress recently and offer immense promise to those who don’t have the use of their arms and hands. Exoskeletons can help paraplegics walk, although the technology is still somewhat crude. There are developments to aid visually impaired people and new ultrasound techniques that can treat essential tremors. However, it should be noted that not everyone with a disability needs a cure nor does every disabled person want a “cure.” A society that appreciates and enables progress allows for all people with all abilities a voice and chance for a vibrant life. Being disabled is not less than and should not always be viewed as something to be fixed. 

There are also cultural developments like raising awareness of disabilities via July’s disability pride month, which celebrates the disability community and commemorates the landmark passage of the Americans with Disabilities Act (ADA) in 1990. It’s also a time to call attention to the further progress that needs to be made, like representation in the media and the need for accessibility in physical spaces. 

For the sake of the disabled and marginalized people everywhere, systems that enable progress should be promoted. Progress studies as an area of advocacy, public policy, and academic research should also include the story of those with physical and mental disabilities because it presents a dramatic tale of how progress improves the lives of those around us. It also presents a blueprint of how the gains over the last few decades can be surpassed in the future.


 

7

2 comments, sorted by Click to highlight new comments since: Today at 7:49 PM
New Comment

Thanks for sharing your story. Although there are a lot of disability advocacy groups, progress studies is in a unique position in that it can detail technologies that enable people to live rich lives who otherwise would not be able to.

I would love a follow up article on the technologies that are most essential for your wife's life and how they work both in the technical and socio-cultural sense. 

Thanks very much! Yes, I'd be glad to write a follow up piece like that. Appreciate the suggestion!