Assistive technologies that enable an amputee to not only walk, but run and dance, are obviously incredible. New prosthetic limbs simulate natural gait. Brain-Computer Interfaces allow people who are completely paralyzed, “locked in,” to communicate. Enable Talk Gloves (only $75!) translate sign language to spoken words. The recent trend of technological advancements is so remarkable—and accessible—that it may even, as one prominent roboticist boldly claims, largely eliminate disabilities during the 21st century. However, whether his prediction can come true requires an examination of the definition of the term disability. To illustrate, it is helpful to view how these technologies and the legal definition of disability will interact from the perspective of a single, generally disabling, condition, such as cerebral palsy.
Background of Cerebral Palsy
Cerebral palsy is a neurological condition characterized by abnormal movements, muscle tone, or posture. It is caused by a brain injury or abnormal brain development, most typically during pregnancy, but some cases arise in infancy or very early childhood. The underlying injury is permanent but doesn’t worsen over time (non-progressive), so the person’s symptoms are relatively the same throughout their life. Common symptoms include: poor muscle coordination during voluntary movements, such as reaching for things; abnormally stiff or floppy muscle tone; spasticity, which means exaggerated reflexes or too tight muscles; and an abnormal gait, such as dragging one foot, walking on toes, or a “scissored” gait. Many people with cerebral palsy also suffer from other conditions related to developmental brain abnormalities, such as excessive drooling, difficulty eating and swallowing, seizures, and intellectual disabilities.
There are a variety of treatments for cerebral palsy, but there is no cure. Most treatments are “disability management.” The available treatments typically aim to minimize the symptoms of cerebral palsy and improve the person’s functional abilities. This includes medication, physical and occupational therapy, surgery, and speech therapy. Assistive devices such as wheelchairs, walkers, and computers with attached voice synthesizers play a critical role in treatment of cerebral palsy.
Robotic Limbs and the Americans with Disabilities Act
Hugh Herr—the same roboticist mentioned above—suggested at a recent conference organized by the Economist that we may soon see people opting to amputate limbs in order to replace them with higher functioning robotic ones. People with cerebral palsy are one population that may be interested in taking such a drastic step. Some people with cerebral palsy experience symptoms throughout their entire body, while others’ muscular coordination disabilities affect only one side of their body or are isolated in one limb. Those individuals with isolated symptoms could replace the affected limb. If Mr. Herr’s prediction is taken to the extreme, individuals who experience spastic movements throughout their entire body may be able to replace all of the affected nerves and enjoy smooth coordinated movements.
If people with cerebral palsy opt to replace limbs or more, will their disability be eliminated in the eyes of the law? The answer turns on how disability is defined. As the law stands now, to qualify for protection under the Americans with Disabilities Act (ADA), a person must meet the statute’s definition of an individual with a disability: “a person who has a physical or mental impairment that substantially limits one or more major life activities, … a history … of such an impairment, or a person who is perceived … as having such an impairment.” The ADA is a civil rights law that aims to protect people with disabilities from discrimination and to ensure that they have access to public services and benefits. Individuals’ status as “disabled” under the ADA is determined on a case-by-case basis. Being labeled “disabled” comes with complex social and legal consequences and benefits. Accordingly, it is not clear whether those people whose disabilities have been ‘eliminated’ would want to continue to be considered disabled. Further, whether people should be permitted to retain their “disabled” status under the ADA after a functional “elimination” of their disability is a legal, political, and ethical conundrum. Two elements of the ADA’s definition appear to preserve those individuals’ option to retain their “disabled” label under the ADA—the “history” and “percieved … as having” criteria. Accordingly, the ADA’s current definition decreases the likelihood that Mr. Herr’s prediction is correct. .
The “history” portion of this broad definition seemingly permits a person who has adopted a robotic limb to continue to be considered disabled. Thus, as long as the definition includes “history,” Mr. Herr’s prediction that disabilities will be largely eliminated cannot come true under the ADA. This suggests that it may be time to rework the ADA’s definition, a difficult task. At what point would it be proper to consider a person no longer disabled, despite their history? One lawyer-bioethicist argues that existing mobility assistive devices, such as wheelchairs, should already be treated as part of the owner’s body under the law in the event that a third party harms it. But should that argument work in reverse? Once a device that permits its user to function at the same level as people who don’t have histories of disability can be fairly considered part of the body, should that user no longer be considered disabled? How integrated into the body would that device need to be? As assistive technologies become more lifelike and commonplace, it seems that the definition should be changed to make way for a future in which disabilities can be considered largely eliminated.
The “perceived… as having” portion of the definition poses an additional barrier to actualizing Mr. Herr’s prediction. For example, if a person suffers from multiple symptoms or disabilities (like most people with cerebral palsy) how many of their symptoms would need to be ‘cured’ by robotics for that person to no longer be considered disabled? What would happen if a person with cerebral palsy no longer had spastic muscle movements in their arms thanks to robotics, but continued to suffer from the characteristic tongue thrusting or facial symptoms such that others could identify them as someone who suffers from cerebral palsy. However, given the powerful effect of stigma, whether it would be appropriate to remove that portion of the definition is loaded issue that regulators must approach extremely cautiously.
The definition of “Disability” and Legal Autonomy
A person who is considered disabled from a legal autonomy perspective is someone who lacks legal capacity to perform certain acts. For example, a person with a communication disability or an intellectual disability as a result of cerebral palsy may not be able to perform the legal acts of communicating consent or making decisions about finances. Such persons are often appointed guardians or other advocates who assume responsibility for their legal decision-making. However, as assistive communication devices are improved and become more popular, fewer people with cerebral palsy will require legal proxies or those proxies will play a smaller role. Helpfully, the Model Rules for Professional Conduct have already established a good precedent for accommodating those changes. The rule for assisting clients with diminished mental capacity requires that a lawyer try to involve the client as much as possible, and to frequently reassess the client’s capacity to make independent decisions.
So, Mr. Herr may be right with respect to disability in the legal autonomy context. For people with cerebral palsy who are disabled because of physical communication impairments, advancements in and increased popularity of devices like the ECO2, a form of “augmentative and alternative communication” (AAC) that creates verbal speech from the user’s head movements, may very well eliminate their disability. Brain-computer interfaces are an even more advanced form of the same idea. Further, people with cerebral palsy who have less legal autonomy because of an intellectual disability (approximately 40% of people with cerebral palsy suffer intellectual disabilities) may enjoy greater independence thanks to technology that promotes early child language development.
New developments in assistive technology will transform the lives of hundreds thousands of people with cerebral palsy. These inventions are changing the way people with disabilities live, as well as how our society thinks about disabilities. The European Commission (EC) has recognized the need for European law to adapt. To that end, the EC is funding RoboLaw, a large-scale research project to investigate the interplay between European law and emerging robotic technologies. This was a brief and narrow assessment, but it revealed that whether technology can successfully eliminate disabilities depends in part on the definition of disability in U.S. legal system. The U.S. should follow Europe’s lead and begin investigating the best way to restructure its laws as well.