Two years ago, a friend of mine who works and advocates within the mental health system in Erie County, NY asked me to write something for the Anti-Stigma Coalition. I wanted to write about the RISKS involved with asking for help because this is a topic that is often avoided because those who work within the mental health system do not want to deter potential consumers from seeking services, but the reality is that there are risks involved with seeking help – and that sometimes force and trauma are packaged as or folded into help, and this is something that every consumer and person deserves to know before they seek help for themselves or others – or have help forced upon them.
Below is what I wrote for the coalition – it didn’t jive with the campaign’s mission but it does jive with MITA’s mission, and so it’s been sitting in a folder for two years, but I decided to post it up in the event that someone out there reads it and finds it meaningful or helpful. This short essay was written primarily for people who identify as consumers but is likely to be relevant to those who do not identify as consumers or those who identify as psychiatric survivors. It was written by someone who was harmed, not helped, by the mental health system, and by someone who does not identify as a consumer – but, rather, as a survivor.
Seeking Help: Precautions and Proactive Choice-making
Culturally, we’re at a point where we have not yet acknowledged fully that some treatment options have their drawbacks and that not every kind of treatment is right for every individual. Mental health consumers are often encouraged to “seek treatment” with little information about what that means. There are potential positive and negative consequences to all actions, including the act of seeking treatment. What constitutes “help” is different for each individual, although professional institutions function on consensuses about the meanings attached to this word. Perception varies from person to person, and your definition of “help” may differ from another person’s definition.
While the mental health industry-at-large promotes the idea that treatment is always the answer, mental health consumers have a more nuanced and complicated relationship with what is referred to as “treatment.” Seeking help is often an essential way of being your own advocate, but every mental health consumer should know that there are risks involved in seeking treatment. In addition, mental health consumers need to be aware of the consequences that are attached to different treatment options and paths. What is “help” to some might be seen as “harm” to others, so it is essential for mental health consumers and their advocates (including significant others, friends, and family members) to understand the range of shapes that “help” can take in order to make informed decisions that will not further increase alienation, stigmatization, and suffering in the long run. Mental health consumers, and those who do not identify as such, can work to ensure that they are able to make mental health decisions from an empowered position.
There are a number of ways that mental health consumers and their advocates can take precautions and make proactive choices as they consider care and treatment options for themselves or their loved ones. Here are nine suggestions to consider when it comes to the question of whether or not to seek help:
1. Know yourself and tell others.
Knowing what your values and beliefs are regarding issues like bodily autonomy and consent, as well as with regard to medication, makes them easier to articulate and harder to ignore in times of crisis. Avoiding a crisis is not always possible, but preparing in advance of a crisis will allow you to act on your own behalf, at least to some extent, during moments when your voice may no longer count or be factored into your treatment. Making your treatment wishes known, preferably in writing, to those most trusted in your inner circle, which may include family members, close friends, a therapist, a member of an organization in which you participate, a lawyer, or a mental health advocate, is one way of advocating for yourself in a preventative way.
2. Know your treatment options, and know the treatment options that you want to avoid.
Knowing as much about the existing treatment trajectories as possible, in advance of seeking or being offered treatment is helpful, especially if you are concerned that you might find yourself being forced into treatment. We sometimes think that the only treatment options available are the ones to which we have been exposed ourselves. While this is sometimes true, it is not always the case. The more you know, the better you can make informed decisions that will make you feel empowered, instead of helpless. While you may oppose a form of treatment, you cannot do so effectively without knowing what constitutes that form of treatment. There are people within the mental health system and outside of it who have knowledge and experience with various methods of treatment, and they can serve as helpful resources as you empower yourself by becoming informed.
You are least likely to have access to all of the information available while you are in a moment of crisis or in an institution. Often, once you are in an institution, your access to resources and information will be limited or non-existent. At that point, you are already in the model of treatment. It is best to find out about treatment models and options, and their histories and controversies, before you find yourself within a given model. A major part of gaining preventative knowledge is finding out what has happened and what could happen, so that this becomes a working knowledge that you can apply to your own life situations as they unfold.
3. Know your local institutions. Know their policies.
Although it may be true that many mental health institutions have similar policies, two institutions are never exactly the same. Knowing an institution prior to being brought into it, whether by choice or not, is the best way to ensure that you are part of your treatment plan. It is never wise to enter an institution or to enter someone into an institution before having knowledge of the history and practices of that institution. Do a little research. This might involve visiting a website or writing a letter of inquiry or visiting an institution, but expect barriers to your self-empowering research. Mental health institutions often make it difficult, if not impossible, to obtain access to their facilities or information about their practices. Consider yourself an investigative advocate. You want to know about the way that the institutions around you work. Be aware that there are effective sources as well as sources that cannot be trusted, and you have to sift through both. Websites for mental health institutions often present a very simple and positive-seeming depiction of their services and their employees. This may be a form of misinformation or of not-enough-information. But it is still worth pursuing. You might find out something that will empower you at another time.
Knowing the names of the doctors who could potentially be treating you is a good way of staying informed and ensuring that those involved in your treatment can held accountable. It is a lot harder, if not impossible, to collect information on the names of doctors and staff at an institution when you are a patient in that institution, one who might not have access to writing supplies or the wherewithal to try to collect such information. Seek information from the obvious sources, but also look for information from sources that are secondary-but-credible– some of the best advice you will get about an institution will come from someone who has either worked or been a patient in that institution. Network with those around you to find answers about your local institutions, and spread the word.
Planning ahead, and knowing even basic information, such as the names of local institutions, their policies, and the names of their staff members will empower you if and when you are presented with a treatment decision. You can best help yourself and others by being informed about the way that mental health facilities work– seek to know the similarities and differences between institutions.
4. Know local laws related to mental hygiene.
Mental health and the criminal justice system have a long history. Those who experience mental differences are often criminalized, and this has been the case throughout the history of the mental health industry. There are laws that exist that deal with mental health treatment, and it is always best to know about these laws before you encounter an issue with the law. Many crisis situations involving mental health go, first, through the criminal justice system, and end up diverted into the mental health system, which can act very similarly. Those who are forced into treatment end up, by default, involved with the legal system, although they usually possess little rights or agency when this happens. Find out about mental health court, and the judges who preside over those courts, in advance to seeking help. Find out about how your local police stations handle mental health issues or complaints that lead to involuntary mental health treatment. If you cannot find information, ask to speak with members of your local police force. You may not get a comprehensive answer, but you will never get an answer if you never ask.
Asking questions and talking about mental health legal issues publicly is one way of forcing mental health agencies and institutions, as well as criminal justice institutions, to think about and address their policies and practices. It’s a precautionary measure that, in turn, could make the system less stigmatized and stigmatizing.
5. Know your rights.
Often the criminal justice system and the mental health system are mixed up, and it can be confusing and disorienting when it is happening. While good can come of interventions of this dual-nature, it must also be acknowledged that mistakes are made, and you don’t want to be powerless if and when a mistake is made that will affect you. One way to try to avoid traumatic treatment scenarios is to know your rights, in advance. It’s better to understand what may happen and what your rights are in the event of X, Y, and Z prior to actually experiencing such an event. It could save you time and money, but most importantly, it could save you from having to deal with years of damage to your identity, reputation, and psyche. Talk to lawyers, talk to members of your community, find information online, and talk to professionals within institutions while you are on the outside so that you are able to recognize when your rights are being violated and to put a stop to it if it occurs.
6. Get involved.
If you want your voice to be heard or to change the way that mental health is being addressed in public and private institutions, there is only one way that change can occur: and that is through action. Community involvement, or showing up, is the best way to ensure that your rights are recognized. Your visibility and participation are great self-empowerment tools. Look for events in your community that address mental health. Show up. Learn, and share when you feel inclined. Bring yourself into the public conversation. If you, yourself, are the subject of the conversation, you deserve to have a voice within it.
If you are uncomfortable becoming involved in community events and organizations, look to someone you trust to be your ally in the process. Surround yourself with people you trust so that in the event that you are not deemed to be able to make a decision on your own behalf that others, who know your beliefs and wishes about things like medication and treatment, can be trusted and equipped to speak on your behalf or fight for your rights, if needed.
7. Slow down the decision to intervene.
Understand the difference between a crisis that requires professional intervention and one that can be handled by an individual or through community and family support.
This is for professionals, mental health consumers, families, and psychiatric victims alike. Often a line is crossed within the mental health industry between agency/ autonomy and interventionism. Interventionism can be necessary in extreme circumstances, but it is often an approach that is used automatically without considering other options that better recognize personal autonomy and that offer greater dignity. Interventionist approaches are flawed, and harm can come to individuals from well-meaning interventionist agencies. While it is the responsibility of those agencies to make the changes necessary to prevent harm and to admit openly when mistakes are made, this is not always how it works. Given this reality, it is imperative for mental health consumers, psychiatric survivors, and their allies to work to be sensitive to issues of over-reaction or overly-controlling treatment plans that fail to recognize the voices of those most acutely affected.
When dealing with an intervention situation, the key is to move cautiously and slowly, keeping in mind the dignity and human rights of everyone involved. If you are a family or community member considering an intervention, find out about the potential negative consequences that might occur. Hindsight does not have to be an issue if you are well informed, and anyone who facilitates or participates in an intervention should be well informed about all facets of the situation prior to taking action. Hasty actions can have harmful results. If your loved one is the target of an intervention, even one that is well meaning, it is important to understand the options and potential consequences involved before taking steps to enact that intervention. Parties who engage in formal interventions, involving mental health professionals and law enforcement officers, should be cautious in their decision-making process, and should seek to be informed. Those who are the target of an intervention have rights that need to be recognized. If your loved one is the subject of an unwanted or unneeded intervention, you can assist them by offering to obtain legal advice on their behalf.
8. Know that treatment options vary.
Part of crisis prevention and informed consent is knowing your treatment options. Not all treatment looks the same. It is preferable for an individual to be able to decide for herself or himself whether or not treatment is necessary, and to be able to exercise the right to choose when it comes to treatment options. There are different mental health models and ways of addressing cognitive differences. Some approaches avoid labels as a form of empowerment, others use labels as a form of empowerment. Be aware that there are always alternatives, so that if you are presented with something that makes you uncomfortable in any way, you also know that you can try something else that might be a better fit for you.
9. Know that you are your best advocate.
Advocate for yourself. Develop your own opinions on mental health. While having advocates is important, the best advocate you will ever have is yourself. If you are dedicated to advocating for yourself, you will always have someone on your side. In the event that you are not able to advocate for yourself, you will then fall back on your earlier advocacy work and you will likely be glad that you laid the groundwork of self-advocacy. Being your own advocate and recognizing your worth and dignity as a person will help you in all areas of and situations that arise during your life.
*This essay was written by Jessica Lowell Mason, Madwomen in the Attic Co-Founder, in December, 2017.