Psychosocial Disability and Legal Capacity: Don’t Bargain with Human Rights

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As one of its core missions, Mental Health Europe advocates for the rights of people living with mental ill health. We want to ensure that every person living with mental health problems or psychosocial disabilities can enjoy their full rights as citizens, have access to quality mental health care and support and can lead a meaningful life. For the past few years, the UN Convention on the Rights of Persons with Disabilities (CRPD) has been one of the most important advocacy tools in our work on advocating for a more human rights-based approach to mental health.

For those who don’t know, the UN CRPD is a binding United Nations human rights treaty for persons with disabilities, including persons with psychosocial disabilities. It was a fantastic achievement when adopted back in 2006, and its ratification by the European Union (EU) was a landmark — it was the first time a UN Human Rights Convention was signed and ratified by an inter-governmental organisation. This means that the EU and its Member States are jointly responsible for the full implementation of the Convention.

For persons with psychosocial disabilities, one of the most fundamental rights laid out in the CRPD is the right to equal recognition before the law and legal capacity (Article 12).

Legal capacity is about having the possibility to make our own life choices: about getting married, having children, opening a bank account, choosing where to work or signing a contract. Being denied this right can impact on many essential aspects of life and is a barrier to the enjoyment of our most basic rights. Last year, as part of our work on the UN CRPD, we produced a simple but illustrative animation clip explaining what being denied legal capacity actually means.

Having equal recognition before the law means that all people with disabilities, including people with psychosocial disabilities, are entitled to enjoy their civil and human rights like everyone else. Many States Parties to the Convention find legal capacity one of the most challenging rights to implement in practice, and ten years after the adoption of the CRPD progress has been slow and uneven. Since much confusion remained concerning the exact scope of the application of Article 12, the UN Committee on the Rights of Persons with Disabilities issued a General Comment on this issue in 2014 which takes a strong stance for equality, stating that: “Legal capacity means that all people, including persons with disabilities, have legal standing and legal agency simply by virtue of being human” and that Article 12 “requires that support be provided in the exercise of legal capacity.” This may seem obvious to some and radical to others in the mental health profession who routinely make decisions on behalf of their patients who they deem to ‘lack capacity’, because it confirms that there are no circumstances under which the right to legal capacity can be limited because of disability.

But here’s the thing: you cannot bargain with human rights. Either you have your rights respected or you do not, either they are implemented in practice or they are not — there is very little in between. It is our responsibility to ensure that there is no more in between for people living with psychosocial disabilities.

Our latest Position Paper focuses on Article 12 of the CRPD. It has been both challenging and fascinating to work on the issue and discuss this issue with our members from across Europe.

Our position clearly illustrates the need to move away from the practice of substituting the decisions of people with psychosocial disabilities with decisions made by others in their ‘best interest’, to a system of supported decision-making which supports persons with psychosocial disabilities to make their own decisions. We also focus on specific forms of substitute decision-making which are disproportionately applied to persons with psychosocial disabilities such as forced placement in psychiatric units and hospitals, and forced “treatment” of people without their consent — two practices we believe are currently overused in many European States.

In this paper, we recommend that States repeal their mental health laws and abolish these coercive, often traumatising and harmful measures. We also recommend the immediate investment in and development of viable alternatives, such as Open Dialogue, the Soteria Model and Advanced Directives, which are promising models of mental health services and practices which respect the rights of people with psychosocial disabilities. Finally, another important recommendation we make is the provision of human rights training for professionals and users of services in order to ensure that mental health systems are consensual and free from the use of coercion.

Whilst MHE recognises that exercising the right to legal capacity will not happen immediately for everyone and in all services, we are convinced that this is the aspiration we should all be looking to achieve. Real alternatives exist and they need to be publicised, scaled up and implemented in practice as soon and as widely as possible.

We hope that our position paper and our work will inspire the change that is needed and help States Parties to the UNCRPD, professionals, persons with psychosocial disabilities and service providers to understand what supported decision-making for persons with psychosocial disabilities can and should look like. This discussion must include people with psychosocial disabilities and promote best practices around the issue, with the help of other important stakeholders.

We would be delighted to hear from Mad in America readers’ experiences and views on the issue, as we believe this is an ongoing discussion which deserves much more awareness, exchange of promising practices and debate.

Find out more about our work here.

Read our position paper here.

And watch our video on legal capacity here.

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

25 COMMENTS

  1. Hi Maria,

    thank you for this article! It seems so sad that America, my home, which touts itself as the home of the ‘free and the brave’ willingly strips the freedom of so many citizens without due process or anything! I wish you the best and hope that our politicians, somehow, will do the right thing in spite of the pressure from other corners..
    Sam

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  2. My understanding is that the APA formally dropped the use of Roman numerals in the DSM-5. So there’s no such thing as the “DSM-V”. Hey, correct me if I’m wrong. It’s a small but important detail. Also, in the linked video, we still see “MHE” using the deceptive and fraudulent euphemism “meds”/”medications”, when it’s far more correct, and less confusing to just say DRUGS. Drugs are drugs are drugs are drugs drugs, and “meds” are a fantasy. I’d like to see “MHE” address those 2 points. Also, I have to wonder what, if any, connection there might be, between MHE, and “Mental Health America”? The names are similar enough, and it would be confusing if there is no official connection between the 2. “Mental Health America” is a largely drug company funded propaganda group, which is as problematic, and anti-human rights as NAMI….

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    • Thank you very much for your comments Bradford. MHE is a European membership-based organization. There is no connection to Mental Health America and we do not accept any funding from pharma.

      Concerning the use of terminology, many thanks for your comments. We generally use “medication”, although we are well aware of the overuse and many terrible side-effects of medicines/drugs. But there are also many persons who find their medication helpful and at least in Europe the word “drug” would have a bit of a negative connotation.

      But I definitely take your points and we will continue to discuss around terminology within MHE!
      Thank you also for your remark in relation to the DSM-5.

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  3. Thank you for this important post, and for your vital advocacy for Human Rights for those disenfranchised by psychiatry.

    Once any person enters the world of psychiatry with its unparalleled powers of “arrest”, incarceration and forced drugging, they not only loose their Human Rights during the period of detention, but effectively their Rights are compromised in perpetuity.
    They are vulnerable to injury, abuse and degradation in these institutions.
    They may be subject to further enforced drugging in the community after eventual release.

    Survivors report adverse physical, emotional and psychological experiences.
    They may have suffered irreversible psychological, social, emotional, economic, relationship, and physical injury in the absence of their Human Rights.

    Self esteem is unlikely to survive or re-emerge after exposure to brutality and misdiagnosis.

    Maria – I believe that you have to fight for two categories of those who suffer this denial of Human Rights.

    There are those who are in these institutions following experience of profound emotional and/or psychological distress and suffering.

    A second, overlooked and virtually abandoned group are those who never, ever had any “condition” which might be considered a “mental health disorder”.

    Such is the ignorance of adverse drug reactions, and the diagnostic fallibility of some prescribers of SSRIs/SNRIs (and other AKATHISIA inducing psychotropic drugs) – that they cannot differentiate
    “functional psychosis”
    from the intense agitation–>akathisia–>toxic delusion/toxic psychosis progression caused by acute chemical brain injury resulting from prescription medications.
    The latter is an acute medical emergency. It is not a psychiatric emergency.

    Failure to diagnose this life threatening and life terminating toxicity-progression is the result of two decades of falsification of clinical trial data by pharmaceutical companies and a decade or more of failure on behalf of drug regulators. Hence the hidden reality of SSRI induced suicide across all ages. (Tobin v GSK 2017)

    Both prescribers and patients have been deceived and coerced.

    Many patients pay with their lives, or with extended, even permanent exile from society, employment, relationship, community – some denied child bearing/rearing, and all other joys of their independent,
    fulfilling lives before iatrogenic akathisia was misdiagnosed as “first episode psychosis”.
    Many will have been coerced into taking these prescription “medications” for normal human adverse experiences such as “exam stress” – “college stress”.
    A consultation based on basic supportive psychological understanding would have been truly therapeutic
    and non-toxic.

    Compulsory detention in a psychiatric “hospital” for acute neurotoxicity is an individual human catastrophe.
    They will be forced to take more of the very drug class which caused a completely healthy person to become akathisic, and their enforced prescription drug toxicity will be profoundly exacerbated by compulsory antipsychotics.
    Generalised psychotropic malignant syndrome, tardive dyskinesia, multifocal brain injury, cardio-toxicity, endocrine and integumentary toxicity may follow swiftly, and be denied by prescribers.
    Antipsychotic induced pseudo-acne and post-SSRI sexual disfunction further disfigure and isolate respectively.

    Then follows the cascade of falsified labels: – “psychotic depression”- “bipolar disorder”- “borderline personality disorder” – “schizoaffective disorder”, – each leading to abrupt cessation of the last cluster of psychotropics and the resulting withdrawal syndromes are misdiagnosed as exacerbation of Serious Mental Illness (SMI).
    Next – inappropriate entry onto the SMI Register further stigmatises, humiliates and soul-destroys.
    Repeated, reinforced messages of “lifelong irreversible brain disorder” add to the destruction of hope.

    So, there are those whose appalling withdrawal of Human Rights results entirely via iatrogenesis.
    They suffer exile from society alongside those suffering the same inhumanity for non-iatrogenic “mental health disorders”.

    Those who may achieve some degree of recovery from injury, perhaps after some five to ten years off psychotropic drugs, may experience gradual insight into, and awareness of what has been done to them,
    and what has been stolen from them.

    They live in justifiable terror of being re-captured by psychiatry and forcibly re-intoxicated. This is not paranoia.
    When they become ill physically, they no longer can access genuine medical help as all trust in all medical men and women has been destroyed by psychiatry, even though one or two psychiatrists may have helped to organise taper withdrawal.

    The work of Mental Health Europe affords some hope. May you succeed.

    TRM 123. Retired Physician.

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        • Please endorse my neologic construction, “iatrogenic neurolepsis”. I actually got a nurse to put that in my medical record. I think IATROGENIC NEUROLEPSIS works better than “Iatrogenic Neuroleptic Pharmaceutical Cerebral Cognitive Impairment Malfunction”. Regardless whather we use IN, or INPCCIM, we need to hold the prescribers accountable…. Psychiatry is a pseudoscience, a drug racket, and a means of social control.

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    • A very bad SSRI reaction precipitated my own descent into madness. This led to a bipolar diagnosis and emotional abuse by my family members who no longer see me as an adult human being.

      Now that I have slowly tapered off most of all my drugs–with no help from anyone except virtually–I am overwhelmed with feelings of anger and grief. I have given up all hope of a happy, productive life. Looking back, my religious beliefs saved me from suicide. Psychiatry drove me to the brink–and it is no thanks to the system or their life destroying drugs that I am alive today.

      I don’t trust my current GP because he told me my bipolar label was legitimate. The drug I took only “unmasked” the fact that I was a hopelessly, defective nut. Even the DSM 5 is questioning that premise. I avoid seeing him as much as I can help it. He is a naive simpleton.

      Btw, when he gave me that nonsense about unmasking bipolar he couldn’t tell that I was off the neuroleptic and “mood stabilizer” he prescribed. I had been for over 9 months. According to him I should have been in a full-blown mania. Yet even my mom who attributes my every odd or annoying habit to my “brain disorder” would vouch for my not being manic. When it comes to madness most medical people are deceivers or themselves deceived. This is why I distrust doctors.

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  4. Speaking of rights and who deserves them… It saddens me that the worst thing you can say about another person is that they’re crazy. Not that they’re hateful or racist or mean or violent, but that they’re unhinged. Suggest that someone thinks differently and you’ve instantly got a leg up on them.

    I’ll admit to being crazy. I’m crazy for thinking that domestic violence victims should be protected instead of given antidepressants, I’m crazy for thinking that children should have the right to live in a harmonious home, I’m crazy for thinking that minorities should have the right to walk the streets without fear, I’m definitely crazy for thinking that poor people should have the right to nourishing food and electricity and healthcare, and certainly crazy to think that everyone should have the right to the pursuit of life, liberty and happiness. I’m crazy for not worshipping the almighty dollar and capitalism, and I’m crazy for not wearing my patriotism on my sleeve. I’ll admit to being crazy for holding these ‘radical’ beliefs. What I’m not is mentally ill. Wanting to be treated with love and kindness and reacting poorly when I’m not makes me crazy but not ill because it is not a sign of illness to be sad at mistreatment. It’s the most normal thing in the world!

    The worst thing we can say about someone is not that they molest children or beat their wife or they’re a violent drunk – the worst thing we can say is that they’re crazy. This allows us to restrict their rights. They don’t think like ‘us’ (whoever ‘us’ is – not me) so the natural reaction is fear… And isolation and restriction.

    To be honest. I prefer the company of my fellow crazies. We understand each other better than the sociopaths running the world. I’ll happily sit in the crazy corner and watch the DAPL folks poison the groundwater, and the Goldman Sachs folks destroy our economy, I’ll watch the Trumps and Clintons (and Alitos and Ginsbergs) fake fight as if they aren’t all friends when the media isn’t looking. But I’ll never come back to the mentally ill table. And I’ll never allow those in power to ostracize me again. The only way we will get our rights back is organizing and fighting back and sticking up for those who are still being harmed by this incredibly destructive system.

    I’m crazy for sure – just not mentally ill. The UN Convention for the Rights of Persons with Disabilities is great in theory but it’s up to us to save each other. The Hague is not coming to your rescue. Speak up for each other. We are all we have.

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        • Thanks Steve and Steve – wait, do two Steve’s make a Steven? Kind of like oxen? Plurals are hard! Need more coffee…

          It wasn’t really my intent to write an essay! I suppose my passion on the subject ran away with me. To more appropriately address the author and the article – I think the work being done at the UN and by MHE to advance the rights of those with psychosocial disabilities in Europe is fabulous, necessary, and to be commended! I’m not sure if it will translate into anything meaningful in America because the UN just doesn’t seem to hold that much authority among the general public here. So from my perspective, at least here in the USA, its seemingly going to be up to us loud and proud “nefarious critics” to shout it from the mountain, so to speak. I think I’m going to have to have a pin made with that saying now…

          Anyway, thanks Steves!

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    • It really irritates me when some expert quack gets on the air and says that man bludgeoned his family to death because he is bipolar. That man made dozens of recordings of himself molesting children because he is a paranoid schizophrenic.

      Then they get upset when we don’t put on cute t-shirts with our psych labels and go on “stigma reducing” walks. Those of us who haven’t been on in the system for more than five years can be in it–some of us can barely stand up if that. All those safe and effective poisons. “Don’t be afraid to self identify. You want to end ‘stigma’ right?

      And who told the public we were dangerous and depraved, Dr. Dummy? You use the “stigma” or fear and hatred of us to your advantage when it can be used as a means of social control to drum up more business by labeling preschoolers. Or keep your lawful prey from escaping. Then you whine when your favorite weapon backfires and people are afraid or ashamed to get the “help they need.”

      Duh! Whoever wants to spend your life as a social outcast–unable to work, have a family, feel anything better than mildly depressed because you’re perpetually drugged, lose friends, and live in segregated housing on almost no income see your psychiatrist! As a bonus you have a bunch of health problems, gain at least 100 ugly pounds of fat, and die before your mid-fifties if you don’t kill yourself in despair first. Sounds great. Why is everyone so afraid?

      One of these days I’m going to create my own diagnostic manual of various “moral illnesses” shrinks have. Unfortunately we’re the one’s who suffer from their “ailments.”

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      • Some in the media have been speculating whether the guy in Oregon who killed the two men on the light rail train was autistic of all things!! Nope, he was just an angry white dude who was affiliated with known hate groups and had a history of angry public rants and attendance at alt-right rallies.

        But it’s easier to blame the already marginalized than to first accept the fact that we have an Angry White Dude problem in this country, and then do something about it.

        And yeah, the utter hypocrisy of demanding that the so-called “mentally ill” end stigma is similar to asking blacks to end racism, women to end misogyny, and children to end child abuse. It’s downright shameful victim blaming!

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          • I’m going to rewrite that if you don’t mind: “The NAMI Mommies express their cruelty in socially acceptable ways” There’s nothing appropriate about exploiting one’s child in the ways in which NAMI families do. I’m honestly glad my family is of the utterly uninvolved and uncaring bootstraps mentality. I can only imagine how much worse it could have been had they acted toward me in socially acceptable ways and gone the NAMI route. I’d far rather be off their radar than have them trying to “help”.

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  5. Thanks for sharing the European paper, I look forward to reading it and linking to my world.

    I am beginning to try to understand what the Law Reform Commission of Ontario has been working on over the last 4 years– reform around capacity and how to approach.

    They are taking an incremental, stage by stage systems approach – though this will apply to all citizens and their contexts in Ontario.

    A whole population approach is interesting to me rather than a specific population/group, although the context and history around psychiatric care for sure informs in part. I see a whole population approach to capacity having greater potential for actual system and Social Change when we consider an individual’s life time journey.

    Here is the link: http://www.lco-cdo.org/en/our-current-projects/legal-capacity-decision-making-and-guardianship/

    Here is a cut and paste from their page and general reform direction of the report.

    “Key Areas for Reform

    The Final Report’s 58 recommendations include proposals in six broad areas:

    Improving access to the law, in particular by greatly streamlining court-based mechanisms under the Substitute Decisions Act and promoting greater use of tribunals to reduce cost, complexity and time to resolve issues

    Promoting understanding of the law among family members, substitute decision-makers, professionals and service providers, and those whose rights are most immediately impacted by a legal finding or proceeding;

    Strengthening the rights protected under the Health Care Consent Act by improving the quality of capacity assessments and expanding the provision of rights information to those found incapable;

    Reducing inappropriate intervention by providing more options to persons who cannot make decisions independently, and creating more flexible and limited types of substitute decision-making appointments;

    Increasing accountability and transparency for personal appointments, so as to address widespread concerns regarding abuse and misuse use of powers of attorney and elder abuse; and,

    Enabling greater choice of substitute decision-makers, in response to the needs of the growing number of individuals who prefer families of choice, or who do not have family or close friends who are willing and able to take on this important role.”

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  6. I am from Slovenia, Rachel. And what my country mental health *employers* did to me? I was restrained, because I bother staff in the dungeon, that I *feel* horrible pain in my stomach. I was restrained for 6 hours and with accute appendix! 6 hours past, until they send me to near hospital. And another few hours were *lost* there, prior they finnaly *figured* what really is wrong with me.

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    • Ugh! I’ve heard similar horror stories about “madhouses” here in the USA. Like a middle-aged woman who nearly died of kidney failure from severe fluid restriction. My experiences have been rather tame comparatively. Only one of my shrinks seemed to enjoy cruelty for its own sake. Wonder if she was an actual sadist–I mean someone who derives an almost erotic pleasure from the pain of others. Two or three of them actually talked to me like a person.

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  7. There’s one sticking point that I don’t see mentioned here. There ARE persons whose disabilities are so severe, that they truly ARE unable to think, act, care, or decide for themselves. Often, they are also victims of poly-pharmacy, usually benzos for “behavior control”, and neuroleptics, or “major tranquilizers” for God-knows-what. Depakote is a common drug used, also. So these persons, who often require 24-hour care, and a payee, and “supported living”, are also subject to the same human rights abuses as we so-called “mental patients”. Subject to the same horrific “medication” abuses and so-called “side-effects”. Just as with us, too often serious and potentially life-threatening “side effects” are summarily dismissed as the “disease”/”mental illness”/etc….
    I have friends who work as DSP’s,- Direct Support Professionals, and I even know some of the “clients”. One guy suffered severe brain injury/trauma in a car crash. After the initial recovery, he has only limited use of his right hand, is virtually unable to speak, and requires a wheelchair and 24-hour care. We’re talking a MINIMUM of $100,000. – $1Million/year for the CARE of these folks. Another guy I know was debilitated by meningitis as a young boy. He can “feed” himself, if the food is placed in front of him. There’s very little he can do independently, and again, requires 24-hour care and monitoring. Neither the local City, County, or State Gov’ts are really doing the BEST for these unfortunate folks. Public “agencies”, and private, for-profit “agencies” also only do the bare minimum.
    I think we ALL need to remember that it’s not just we VICTIMS of the pseudoscience LIES of the drug racket and means of social control known as “psychiatry”. Oddly, society expects psychiatry to ALSO “treat” these severely physically disabled folks…. So psychiatry OVER-DRUGS them, and when they act out due to akathisia, or drug toxicity, etc., well,…. Sometimes, it’s no comfort to know that we are not alone in our suffering….
    ~B./

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    • Don’t forget the seniors in nursing homes. I had a good friend in her eighties, physical problems–needed walker, and sometimes forgot where she put stuff. Sharp as a tack otherwise! (I dated her son for a while.) Her son and daughters were understandably concerned about her problems getting around and talked her into moving into a “residential care facility” aka nursing home.

      I was concerned about her. I visited her and was glad to see her vibrant and full of energy.

      Apparently the staff thought she was TOO full of energy. Last time I heard, just two or three months after my visit, she was paranoid, fearful and unable to recognize her friends, mostly out of touch with reality.

      I realize there is a thing called sudden onset dementia. But a couple months for that kind of deterioration? I smell something rotten….

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  8. Taking away someone’s legal capacity is dangerous because everyone is selfish. The people charged with acting in others’ “best interests” too often act in their own interests, and very often “guardians” get corrupted by things such as kickbacks from institutions and pharmaceutical companies.

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