Editorial

Want to track a disabled person? Maybe ask them first

Fake news about microchipping highlighted a real debate over autonomy.

Editorial

Want to track a disabled person? Maybe ask them first

Fake news about microchipping highlighted a real debate over autonomy.
Editorial

Want to track a disabled person? Maybe ask them first

Fake news about microchipping highlighted a real debate over autonomy.

On Dec. 8, the US House of Representatives passed H.R. 4919, a bill that would allow the Department of Justice to distribute federal grants to state and local law enforcement for tracking technology used to locate missing people with dementia, autism, and developmental disabilities.

Controversy over the bill, also known as Kevin and Avonte’s Law, initially spread because of inaccurate articles claiming the bill would allow for "microchipping" and would put us on a slippery slope toward a Big Brother-esque dystopia. While those rumors have since been debunked, there are numerous and valid reasons to be skeptical — even critical — of the bill.

This type of "wandering legislation" has long been contentious. The debate centers around the (often competing) concerns of safety and autonomy, as Ari Ne’eman, president of the Autism Self-Advocacy Network, wrote earlier this month in an editorial about the law. The law has potential to help people with disabilities through funding for prevention and training of law enforcement in dealing with disabled populations, as Ne’eman wrote, but it also has the potential for abuse.

Gratitude

The people being tracked are objects here: entities being acted upon by outside forces.

One of the most striking things about the language used by proponents of Kevin and Avonte’s Law is the focus on families of the disabled people who would be tracked rather than on the disabled people themselves. When the Senate unanimously passed an early version of the bill in July, cosponsor Sen. Chuck Grassley (R-IA) released a statement that began:

"The feeling of dread and helplessness families must feel when a loved one with Alzheimer’s or autism goes missing is unimaginable. But with the Senate’s approval of Kevin and Avonte’s Law, we are one important step closer to increasing the chances of a positive ending to many of these nightmares."

The ostensible goal of tracking programs is the safety of "at-risk" disabled people. The bill itself is named after Kevin Curtis Wills and Avonte Oquendo, two autistic children who both drowned after wandering from supervised settings. The safety concerns that lead to wandering legislation are very real, but when tracking programs are introduced as a possible solution, we often see rhetoric that centers the feelings of family members.

Sen. Grassley’s statement is a prime example. He suggests that the main issue here is the "dread and helplessness" family members feel, not the dread and helplessness the missing person might feel, let alone the danger they might be in. The “nightmare” he depicts is one of frightened family members, which is a telling choice. Not only does this undermine the assertion that these programs exist for the disabled person’s own good, but it also subtly reinforces the idea that caregivers’ feelings are more important than disabled persons’ lives. (We see the most extreme effects of this belief every time a caregiver murders a disabled family member and cites emotional stress, often with either total impunity or vastly reduced punishments.) It’s unlikely that Sen. Grassley did this consciously, of course, but that doesn’t lessen the impact of such a statement.

The prioritization of caregivers extends far beyond the motivation underpinning the bill, too. Consider the following section that details the much-touted "voluntary participation" mandate (emphasis mine):

Nothing in this Act may be construed to require that a parent or guardian use a tracking device to monitor the location of a child or adult under that parent or guardian’s supervision if the parent or guardian does not believe that the use of such device is necessary or in the interest of the child or adult under supervision. [Sec. 302(d)(2)]

There are several problems here that may not be immediately obvious. First, no consent is required from the person being tracked. With this absence, it seems their participation need not be voluntary. Indeed, their participation isn’t mentioned at all, not even in passing. The people being tracked are objects here: entities being acted upon by outside forces. Disabled people have long been stripped of agency by the very institutions supposedly designed for our protection (think of involuntary institutionalization, forced sterilization, etc.); it’s dehumanization by way of presumed passivity, which in turn relies on assumed incompetence.

That assumption is why Kevin and Avonte’s Law leaves the use of tracking devices to the discretion of the parent or guardian. This legislation assumes disabled people are unable to accurately assess and communicate their own capabilities, while their parents and guardians are granted that assumption without question. But given the widespread misinformation about various disabilities — and the highly individualized nature of how disability manifests, even among people who share a diagnosis — positioning caregivers as de facto experts is misguided at best. It’s also yet another harmful tradition, one that has historically led to disabled people being denied decision-making power over their own lives. Of course, another word for that is autonomy.

Beliefs like the ones discussed here work to dehumanize, marginalize, and oppress disabled people, and they thrive in large part because of their invisibility. Any legislation intended to protect or support disabled people must therefore be examined closely with that in mind. We must question who is centered, not just in principle but in practice. We must ask whose feelings are prioritized and whose expertise is privileged. We must recognize that there are few perfect solutions in this world, but we must never settle for harmful ones.

In short, we must admit that we live in an ableist society and that any legislation written and enacted in this society will reflect (and likely reinforce) that ableism. The only way to combat that reality is to confront it head on.

The Senate didn’t vote on the House-approved version of Kevin and Avonte’s Law before the end of the session, so it will have to be reintroduced in the next Congress if it’s to progress further. Should that happen, hopefully legislators will think critically about the language used, the assumptions underpinning that language, and the concerns disabled activists (especially those who are autistic and developmentally disabled) have raised about its content.

Kayla Whaley is an editor, essayist, and an MFA candidate.

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