Neurodivergent people are one of the few groups who can be deprived of our most basic forms of autonomy and privacy just because of who we are. This includes confinement in institutional settings such as group homes, nursing homes and residential schools, as well as guardianship and court orders for the misleadingly-named “assisted outpatient treatment.” Most recently, the United States Food and Drug Administration approved Abilify MyCite, an antipsychotic medication that tracks whether a person has taken it or not. Abilify MyCite further threatens the rights of people with psychosocial disabilities by putting us at risk of surveillance and all the consequences likely to follow from that.
As is the case with most practices and technologies that restrict disabled people’s rights, nondisabled people are already defending the new medication as being both for neurodivergent people’s own good and for the convenience of their families and caregivers. But like in so many other situations, the twin presumptions of disabled people’s incompetence and their caregivers’ benevolence create many opportunities for coercion and even abuse that gets carried out and justified with the best intentions.
As even supporters of the new medication admit, people with psychosocial disabilities stop taking their medications for any number of reasons. Many people experience side effects that outweigh whatever benefits the medication may have had for them. The side effects of antipsychotics in particular can be severe. For example, Abilify can cause high blood sugar, involuntary movements, and difficulty swallowing. At the same time, someone’s refusal to take antipsychotics can be used as justification for putting them under guardianship or in an institution. Therefore, enabling providers or family members, much less state or other institutional authorities, to track a person’s use of the medication is a serious assault on their bodily integrity.
All of this is occurring against the backdrop of the United States’ current one-sided “conversation” about mental health, centered on horrific acts of violence attributed to the perpetrators’ alleged mental illness. Despite the evidence that neurodivergent people are no more likely to be violent than neurotypical people, the narrative over the past several years has been incredibly stigmatizing, particularly against people with the very disabilities for which antipsychotics are frequently prescribed, such as schizophrenia and autism. Even though the very worst legislative attempts to limit neurodivergent people’s rights have been defeated for now, the belief that it’s acceptable to sacrifice them in the name of public safety is still dangerous. For instance, the current climate may well lead providers and treatment facilities to prescribe tracking medications like Abilify MyCite more often, out of concern over potential liability as much as or more than its actual benefit to the individual.
The people who will be hardest hit by the consequences of this will be members of other populations that are already disproportionately subjected to coercion and surveillance. In particular, children would have no meaningful privacy protections as against their parents or guardians, making them unable to refuse consent in fact as well as in law. Meanwhile, people who are already institutionalized in prisons as well as psychiatric hospitals would lose some of the few shreds of privacy such settings allow, and proof of medication noncompliance could postpone or prevent their reintegration into the community through parole or discharge.
Absent a strict ban on the use of a drug with a tracking component without a person’s own informed consent, this new development is guaranteed to result in more coercive psychiatric treatment. Not only do drugs that track compliance deprive people with disabilities of the basic right to decide what goes into our bodies, but it substitutes control for trust in the therapeutic relationship, and compliance for progress toward one’s own idea of wellness and personal fulfillment. To make medication a way of violating people’s privacy as well as their autonomy “for their own good” undermines both the purpose and value of mental health treatment as a whole.