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.

Conclusions

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.

The New York Times reports that Apple is using its patents as a sword against iPhone competitors, including Google’s Motorola Mobility. Google’s executive chairman says that the Google-Apple patent battle has lowered prices for consumers, but is killing innovation. Meanwhile, David Drummond, the chief legal officer for Google (which has been under scrutiny from the Federal Trade Commission issues for the past year for possible antitrust violations, and more recently for its smartphone technology patents), discussed the challenges in Google’s quest to reform the U.S. patent system to reduce litigation (and trolls) around mobile devices and software.  Drummond suggested the solution may look more like the patent systems abroad, but would Google approve of the UK’s new plan to award tax breaks to corporations that use patents?

Privacy Advocates and Industry Representatives Struggle to Compromise on Online Tracking and Data Use

A new study shows that most Americans are wary of online tracking. Such concerns are being discussed at a closed-door international conference of privacy advocates and industry representatives, but insiders say the status quo is winning.  Hopefully an effective compromise will be reached before the conference, organized by the global standard group that promotes good governance of the internet, W3C, concludes on Friday.  Echoing those privacy concerns, chairman of the Senate Committee on Commerce, Science and Transportation, Senator John D. Rockefeller, has opened an investigation to determine what consumer information is being collected and sold by nine leading information brokers.  Meanwhile, Equifax settled charges that it improperly sold data on consumers who fell behind on their mortgages; the company will pay $393,000 to the FTC, but admits no wrongdoing.

Around the U.S. Courts

On Tuesday, a federal judge ruled that the criminal case against file-sharing website Megaupload will proceed. Pfizer will pay $164 million to settle a shareholder class action accusing the company of misrepresenting Celebrex clinical trials. BitTorrent piracy evidence will be tested first time in a Pennsylvania District Court.  Also in Pennsylvania, a federal judge dismissed a former employee’s complaint that her employer violated anti-hacking law when it accessed and assumed control of her LinkedIn account after she was fired. The court concluded that her harms were too speculative to proceed under the Computer Fraud and Abuse Act.

Government Regulation of Cars and Cable

The state regulators at the California Public Utilities Commission assert that Sidecar and other ride-sharing app companies do not have the proper permits and authority, and have hit the companies with cease-and-desist orders.  Sidecar maintains that the Commission mischaracterizes their company, stating that it is a communication tool and not a car service.  The FCC unanimously agreed not to renew a rule requiring cable companies that own content to sell the channels to competitors like satellite broadcasters on fair terms.  Competitors still have some recourse: they may file individual complaints if they feel a cable company is acting unreasonably.