Most people who have been declared some variation of insane, feebleminded, or whatever label was en vogue at the moment, were not considered criminals like they were for a time in Alaska. Most of the time it was a legal category with civil repercussions. Anyone who found themselves in a situation where they are unable to support themselves financially has also been stripped of their autonomy and freedom – in practical terms set out by the things people needed to do in order to obtain food, shelter, and clothing.
To be declared insane by a judge was to be officially stripped of agency to make your own decisions. Some legal systems have divvied up types of decision and noted what someone was considered capable of – financial and personal. Others had an all or nothing approach. There’s no shortage of different systems to look at, since this is a state or provincial matter in most places.
Once a judge declares that someone is no longer legally responsible for themselves due to their intellectual abilities or mental health, someone else will be named as the responsible party. In many places this role is called the guardian. Growing up in the 90s, all the papers our teachers sent home with us were addressed to our “parents or legal guardians.”
From the end of the asylum era until recently, parents of intellectually disabled children were counseled to obtain guardianship as soon as they turned 18 and became legal adults. Today parents are finding more nuanced ways to support their grown children without stripping them of agency. Each legal jurisdiction has different levels of flexibility and terms like guardian, tutor, conservator, and curator may be used interchangeably or may mean different things.
Few judges anywhere in the US require proof that less restrictive measures are insufficient to protect the person in question without stripping them of all agency by default. While most guardians make choices based on what the ward wants, they are not obligated to do so.
People under a full conservatorship lack the right to decide where they live, how their money is spent, and what medical treatment they are to undergo. As we all learned from the #FreeBrittany movement, people placed under conservatorships in the US don’t necessarily have the right to retain their own legal counsel. Once someone has been stripped of the right to make their own decisions, it’s virtually impossible to regain them. Even when parents who obtained guardianship of their adult child wish to legally restore or expand their child’s rights, it can be a struggle to get the court to approve it.
There are legal alternatives to guardianship in many jurisdictions. Supported decision making can look like discussing things with family and friends the way all of us do or it can be a more formal process. Formal supported decision making is also regulated at the state level and not all states have relevant laws. Arrangements like medical and financial power of attorney can create guardrails. Trusts can be established to manage financial resources over the long-term. Advance directives allow people to make their own choices for future medical care. With an advance directive, people can also make an appointment of advocate and authorization to navigate institutional systems on their behalf for scenarios they haven’t anticipated.
When we step back and consider these options, it’s easy to see that people with the financial means to do so also use this type of support. Getting formal support is voluntary and we refer to it as having a wealth manager, medical concierge, and personal assistant. The biggest difference is that people who use these services voluntarily maintain the right to ultimately make their own decisions.
The experience of using support services by choice is quite different from when a collaboration is mandated by the court. Most of us are more open to advice when we’ve sought it out, rather than when it’s foisted upon us. With organizations like Fountain House, members have access to these services without the requirement to use them. Being part of a community network can also help us access support services, both formal and informal. When we’re part of a tight-knit community where everyone knows everyone else’s business, we know who’s dealt with similar situations and thus can provide advice based on personal experience.
Even with access to support and resources, people will sometimes make decisions that are less than optimal. My grandmother stubbornly refused to make her bathroom accessible or even remove the throw rugs she kept tripping on. My parents were less than thrilled when I dropped out of college. People engage in extreme sports that have immediate and long-term health risks.
The thing is, we all do things that a panel of experts would object to. The dignity of risk means allowing people to make their own choices, even if we think they’re mistakes. People who are viewed as legally competent do suboptimal things all the time and people with disabilities should also have that right.
All of us have areas of our lives where we are not particularly competent. It’s entirely normal to be overwhelmed by tax reporting obligations, choosing a phone plan, or figuring out how to empty the vacuum canister. Things like the subprime mortgage crisis and ‘obesity epidemic’ suggest that, if it were up to the experts, none of us would be considered competent to make our own decisions. There are reasons the ‘nudge’ and choice architecture are sometimes controversial.
This is why disability justice advocates argue that everyone should be assumed competent to make their own decisions. If someone is capable of any form of communication they’re capable of expressing their preferences and desires. When we assume incompetence and overprotect people, we deprive them of the opportunity to develop and exercise their decision making capacities. The role of guardians could be to enable people to live lives of their own choosing. That’s the way most family guardians carry out their role, even when the legal system isn’t written to require or even support that interpretation.