A Mental Health Advocacy Manifesto

Posted on May 29, 2015 in Authoritarianism Caretakers Hospitals and Prisons Psycho-bunk Stigma

In the course of Mental Health Illness Awareness Month I have shared my perspective on many issues involving those of us who live with organic brain dysfunctions. Now that we approach the end of the time of the lime green ribbon, I think it behooves me to share with you where I think mental health advocates should and shouldn’t go at this time.

The following planks are given in no particular order; though I have striven to put the most important near the top, all should be considered.

1. Recovery over mere maintenance, patient self-determination over caretaking is the foundation of these reforms.
2. Those with a stake in recovery — patients, mental health professionals, and family members — should be the ones determining the direction of mental health policy, not politicians, pundits, or policy wonks who trade in stigma.
3. We must take all mental illness seriously. Mental illness by definition wrecks the lives of its sufferers. Period. Some advocates act as if the pie is always going to be limited. Our objective should be to enlarge the pie using money that is being used to subsidize profitable corporations and industries. Failing to see after the needs of so-called “high-functioning” patients can lead to a dangerous cycle of relapse. Some “minor mental health concerns” such as bullying, child abuse, and anxiety can trigger more serious illnesses. Caring for those who are most severely afflicted should not make us insensitive to the needs of those with “soft” mental illness.
4. Funding for research into psychiatric conditions should be increased, including the “soft conditions” that the forced treatment advocates deride such as bullying, anxiety, and ADD. Drug companies should be motivated to develop drugs with fewer side effects. General practitioners must be better educated in the diagnosis of depression so that they do not medicate those who are merely sad and grief-stricken.
5. Patients must be allowed a say in their treatment, even if it means that they refuse medication. This includes children who may be denied treatment by parents who don’t believe in psychiatry. Patient wishes should be ignored only when they are a clear danger to self or others or are clearly unable to care for themselves. Even in these cases, however, patients must be treated as adults rather than degraded into helpless children. Their rights should be protected at every step and the motivations of their caretakers scrupulously examined.
6. Stigma remains a primary issue for those of us living with organic brain dysfunctions. It prevents us from participating in meaningful work. This leads to more people having to rely on subsistence level disability, a political football that leads to increased costs for local, state, and national government. Furthermore, it contributes to the worsening of our symptoms by pushing our anxiety past the relapse threshold. We must challenge those “mental health advocates” who use stigma as a vehicle for promoting their draconian “solutions” and medical professionals who mock us behind our backs or who treat us as cognitively deficient.
7. We should demand the inclusion of patient voices in discussions about mental illness in our society and enjoy the fruits of thoughtful exchanges of views which is not rooted in sensationalism or harsh confrontation or ignorant punditry.
8. The emphasis in patient treatment should on community mental health over long term incarceration. Patients should have the right to live in the world at large with only modest restrictions and a say in their treatment. Mental hospitals have an unpleasant history that contemporary advocates deny. This is reason enough to suspect their motives in locking up the homeless instead of seeing that they have access to treatment and decent housing. Mental hospitals have a way of keeping patients well after the remission of their symptoms as well as a history of violence and inadequate care of inmates. To suggest that new facilities will be kinder and gentler is disingenuous. To claim that they will save money compared to community mental health programs is simply not consistent with experience or honest accounting.
9. We should realize the promise of community mental health clinics that have enough funding so they are able to handle all who come to them in crisis and for maintenance of their treatment. They should be able to have the resources to follow up on those who miss appointments. They should be able to dispense medication for free or for a nominal charge. (Many who end up in jail commit crimes so that they can get treatment.) It is not true that the community mental health centers which do exist have failed. We have not fairly tested them. There is plenty of money in the federal budget to improve on these: in one day, for example, profitable oil companies receive $10 million dollars in subsidies. Such money must be diverted to the public weal. We must ensure that patients do not have to seek their treatment in overcrowded jails, that the resources they need for recovery exist in the community.
10. We must act on the issue of police brutality. The extremists on the right who support forced medication and mental hospitals point to a document written by an association of police chiefs and claim that it indicates that the police are on our side. But are they? Police chiefs understandably want to get out of the mental health business, but perhaps because they are used to violence and jails as their solutions to the problem of crime they propose unregulated forced medication and long term hospitalization. They fail to address police shootings of the mentally ill, leaving these trigger-happy cops unpunished and undisciplined. Even training the police to respond more sensitively to the mentally ill does not reduce the incidence of authoritarian violence. The mindset of the whole police force must be reformed, community policing established, special mental health intervention teams that are independent of the police created, citizen review boards set up, and special prosecutors who do not have to rely on the police for help in other cases appointed. The shameless coalition building of the extremists should be exposed for its authoritarianism.
11. The scapegoating of the mentally ill as the root of the problem of violence must be brought to an end. We are more likely to be the victims of violent crime than its perpetrators. Police should investigate attacks on the mentally ill with the same vigor that they give to the least afflicted and most influential in our society and bring the perpetrators to justice. Blind defense of the Second Amendment must not be allowed to draw attention away from the serious problem of guns in our society.
12. We should ensure that everyone who has a mental illness has a home. There are more than enough empty houses to deliver on this promise.
13. Health care is a human right. It is time our institutions start acting like it is.
14. Preventative programs such as early diagnosis and programs protecting children from bullying and parental abuse should be a cornerstone of our advocacy. Research shows that these lead to more severe mental illness. Children should have access to safe, noninstitutionalized care when they are the victims of their own parents. Schools should protect students from bullying as a key element of their educational programs and ensure that victims’ voices are not drowned out by those of their persecutors and families.
15. We must ensure that patients living in group homes and hospitals have sufficient space and privacy.
16. We must support a liveable minimum wage as a viable alternative to disability.
17. A special effort should be made to reach out to and educate people of color. African Americans, in particular, end up dead rather than treated for their mental illness. Many Asian Americans face stigma and denial from members of their own families. Education is an essential part of a strong community health program. Patients should have allies in these institutions.
18. HIPAA protections should not be relaxed, except under the oversight of a court. Adult patients are citizens who deserve the same constitutional protections that criminals enjoy.
19. We must challenge the use of our diagnoses as an insult. Not everyone who gets angry is “bipolar”. Confused people are not always “schizo”. Keeping a clean house is not necessarily “OCD”. The application of our diagnoses to the extreme ideas of some of the sane unfairly associates us with their bizarre politics and religious ideas. We do not deserve to be held accountable for beliefs that are not our own and which are not the product of our delusions.
20. We should support the establishment of mental health courts separate from the criminal justice system. These courts should monitor conservatorships, hospitalizations, and forced treatment plans. They should protect the interests of the patients over those of caretakers. Court-appointed caretakers should have clean criminal records and regular psychological and psychiatric exams. Social workers should regularly interview patients about abuse and report any bruises or other signs of physical or emotional abuse to the court. Failure to comply with these standards should result in conservatorships being handed over to other, disinterested parties. Conservators who physically abuse their charges should be prosecuted to the full extent of the law by the criminal courts. No conservatorship should last more than three years.
21. Caretakers should be entitled to at least two days relief each week and three weeks of unpaid vacation from their duties.
22. Feeding the homeless should not be a crime. Communities which make it so should be struck with sanctions by federal and state authorities.
23. Privatization of public clinics, group homes, and long term care facilities should end. These all put the bottom line above the patient. Seriously afflicted patients find themselves on the street when these facilities choose to treat only the more profitable, easy cases.
24. SAMHSA should be overhauled, but not replaced with politicized mental health scheme. This federal agency is the bogeyman of the forced medication advocates because of its support for conferences such as Alternatives. SAMHSA’s programs should be audited on a regular basis. Any committees which do not meet in the course of a year should be dissolved. The patient voice should remain strong within the federal mental health hierarchy and SAMHSA programs should not be subject to mandatory review by Congress. SAMHSA should continue to fund scholarships to mental health conferences for consumers — including Alternatives. It should give grants to recovery-oriented mental health organizations.
25. Support for patient-oriented mental health organizations should be strengthened rather than weakened as proposed by the forced treatment fanatics. Support groups have been shown to empower and involve patients in their own recovery. Not only could they be strengthened through federal grants, but also through community support such as churches which could provide space without using them as ways to proselytize new populations.
26. Forced ECT and lobotomy should be outlawed. Conservators should not be allowed to force their charges to undergo these treatments.
27. The homeopathic exemption in Federal law should be repealed. Alternative therapies for mental illness should be proved through clinical trials. This includes medical marijuana and vitamin therapies. The homeopathic exemption has been used to peddle all kinds of snake oil. Consumers should be secure in the knowledge that the treatments marketed to them actually work.
28. The right to Mental Health should be international. The World Health Organization should have the funds to help nations develop effective and compassionate treatment programs for the mentally ill among them.
29. Patients who live in countries with negligible or inhumane mental illness treatment centers should be eligible for refugee status.

Do you have something to add? I’ve noticed that when patients are polled on these matters, they come up with many of the suggestions that I have made here. Virtually none speak up for forced treatment or mental hospitals. Effective programs help, not control. We are the ones who know best what it is like to live with a mental illness. For this reason, our voices should never been discounted or left out of the reform process.