To Senator Harkin: My CRPD Story

Tina Minkowitz, Esq.
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Dear Senator Harkin,

My story is no doubt unlike the others you will hear.  I tell a story of justice denied in the United States, which has the possibility of being redressed if the CRPD is ratified and fully implemented – without being encumbered by reservations or by declarations and understandings amounting to reservations.  It is also a story of the awakening of hope in the world – led this time by other countries, not the United States – for a future we can all be proud of.

More years ago than I’d like to remember – in 1977 – I was taken abruptly from the street where I was walking towards a subway, and locked up in psychiatry.  My parents instigated this on a pretext that I was “running away” from them.  I was over eighteen.  I was walking with my parents and was irritated with them because they had taken me to see a psychiatrist who had treated me like a case to be analyzed and not like a human being.  He had doubtless advised them to have me committed during the time he spent with them alone.

This began my nightmare in life.  I spent that night being “booked” – being transported, being held in one place and then in another, till finally in the wee hours I was admitted into Kings County in Brooklyn.  It must have been full, because after shedding my clothes and putting on blue and white hospital gowns (back to front, front to back) I was taken to an unusually high bed in a room with two or three other women.  I was crying the entire time from fear.

The next morning, I was told to get in line with the others for medication and I stammered a refusal, whereupon a nurse laughed and said, “We’ll see what you say tomorrow.”  The threat implied in her voice, and the easy confidence, chilled me.  Sometime that day I abandoned myself and began to see myself as they did: a crazy person who had no agency and no hope.  Resistance was futile.

The drug finished the process of destructive despair that was taking place within me and remade me into something artificial; I no longer knew myself.  I survived as a small voice inside myself, and in my somehow unshakeable optimism that let me survive and search for a way through.

There is more to the story but I will fast forward to the years from 2002 to the present, when I had the miraculous opportunity to be part of the drafting of the Convention on the Rights of Persons with Disabilities.  This was a historical anomaly – a newly-made law school graduate and grass-roots activist shaping international law as the chief representative of a global organization called the World Network of Users and Survivors of Psychiatry.  We erupted collectively with the whole disability community and UN member states – including the United States – in a four-year process of deliberation, seeking a visionary justice for all people with disabilities, including those like me, who are regarded as disabled by virtue of psychiatric labeling and thus count as persons with disabilities under the ADA as well as the CRPD and other UN standards.

The fulcrum of the so-called paradigm shift in the CRPD is Article 12 on legal capacity – one of the articles that WNUSP helped to shape along with Inclusion International, the organization representing people with intellectual disabilities and their families.  Legal capacity became the fulcrum because we all realized that it was possible to distinguish between the support that a person might need to express his or her will and preferences, and the substitution of the person’s will that negates their independent personhood and their inherent dignity.  Surrounding legal capacity were also Article 14 on the right to liberty and security of the person, which prohibits discriminatory deprivations of liberty based on disability including involuntary commitment in mental health facilities; and provisions on the right to respect for integrity of the person and the requirement of free and informed consent in health care services.  These provisions separately and together prohibit violations of human rights like what happened to me in 1977.

The CRPD contains much more; it is a rich tapestry with many patterns that came together as a result of the interactions among different constituencies and sectors of people with disabilities, from NGOs like WNUSP and also those who were part of government delegations or consultations back home.  Other provisions that WNUSP was involved in include the principle of individual autonomy including the freedom to make one’s own choices; the right to an adequate standard of living for oneself and one’s family; the right to choose where and with whom to live; the right to work including reasonable accommodation and an application of the principle of non-discrimination to all workplaces so that there are no exemptions allowing exploitative sheltered workshops.

Violations of all these rights that I have enumerated under the CRPD persist in the U.S., and many of them are upheld by and under U.S. law, including federal and state statutes and regulations and the interpretation of federal and state constitutions.  The CRPD has a higher standard than our own laws, and under Article 4 of the CRPD the U.S. would be obligated to bring its own laws into compliance.  Yet both the Administration and the Senate have encumbered the treaty with numerous reservations, understandings and declarations including a reservation with respect to matters governed by state law and a declaration that in light of the reservations, U.S. law fulfills or exceeds its obligations under the treaty.

My question to you is, how will the U.S. repair the wrongs that are being done to people with disabilities now and that will continue indefinitely so long as our laws are not changed?  How will the U.S. take advantage of this opportunity for improvement presented by the CRPD?  Or will our ratification, if it happens, only be a means to berate other countries whose standards in some area of human rights may fall below our own?

Let me tell you about some areas in which the U.S. could learn from work being done in other countries.  Peru, India and Costa Rica are all ahead of us when it comes to CRPD implementation.  Costa Rica has drafted a bill that is being considered in its parliament (though so far stalled), which would end the institution of legal incapacitation and guardianship and instead put in place a system to provide support for individual autonomy.  India drafted a bill on the rights of persons with disabilities in a process of broad consultation with civil society, with strong input from disabled people’s organizations.  Though not perfect, a version of this bill would have obligated the government to phase out civil commitment and to eliminate most forms of guardianship with the possibility that any individual who sought to be released from guardianship would find satisfaction.  Unfortunately this bill was rewritten to take out the progressive positions and is no longer rights-based, but it was a start that we can hope will be revived, perhaps as a result of the interactive dialogue with the Committee on the Rights of Persons with Disabilities when India is reviewed.  In Peru, the disability movement succeeding in putting a key provision in comprehensive disability rights legislation that called for revision of the Civil Code.  In countries that follow a civil law system, in contrast to our own common law one inherited from England, the Civil Code is a foundational instrument that among other things contains provisions on legal capacity.  Now that the Committee on the Rights of Persons with Disabilities has issued its General Comment No. 1 on Article 12 (equal recognition before the law), specifying the normative content and obligations on states related to legal capacity, Peruvians are poised to work on these reforms.

The U.S. cannot seek only to be a teacher and leader.  It has to humbly acknowledge where it is failing, and where it can learn from other countries.  In the disability world, the rights of people labeled with psychiatric disabilities are a shameful failing of the U.S.  Despite a ground-breaking report issued by the National Council on Disability in January 2000, From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves, the U.S. has ceded its leadership role and ignored the call of the NCD to question involuntary commitment and forced treatment as “inherently suspect” and move towards a totally voluntary mental health system.  Instead we have seen the growth of not only inpatient commitment but also outpatient commitment, fueled by hateful stereotypes of us as violent and uncontrollable – in effect as the “Other” that is continually invoked in order to justify greater repression that has an impact on everyone.  In our case, the repression is muffled and sugar-coated by the silencing of our voices – both our stories and our resistance – so that the official story is one of help provided to those who unfortunately don’t know that they need it.  Well, we are all familiar with this kind of paternalism – it is the face of colonialism towards indigenous peoples and it is the face of male domination of girls and women and transgender people.  In disability, paternalism is making a last stand.

The CRPD can help us to educate people beyond this ignorance and fear.  In its General Comment dealing with legal capacity, the Committee on the Rights of Persons with Disabilities decisively rejects paternalistic coercion or substitute decision-making, including the use of concepts like “mental capacity” or “unsoundness of mind” to deprive a person of the right to exercise legal capacity – including the right to decide about a medical treatment.  Forced psychiatric treatment is recognized as a practice that causes considerable suffering and infringes the right to be free from torture and ill-treatment; the General Comment calls for abolition of laws and policies that allow this practice, including provisions found in mental health laws through the globe.  Why will the U.S. stand outside this forward-looking blueprint for change?

We are in desperate need of healing as a society.  The bipartisan bickering not only over the CRPD but over too many issues has masked a corporate takeover that seems to be nearly complete.  Ordinary people are suffering both economically and socially as the scope for individual freedom narrows, along with the possibilities for living well.  Unjust government intrusion into people’s lives and communities, especially the depredation against young men and women of color, is decimating the fabric of life and people’s ability to trust one another, while the power of government to do good by providing for social and economic needs is mistrusted and too often rejected, notwithstanding the Affordable Care Act.

The spate of psychiatric profiling that erupted into the national consciousness periodically over the past several years and then non-stop since December 2013, is unconscionable and amounts to sacrificing those who are deemed politically expendable, while satisfying a small group of pro-forced-treatment advocates who have been lying to the American government and public in order to promote a hate-filled agenda.  Instead of catering to hatred, the U.S. should remember its mantle of non-discrimination and equal protection under the law, particularly for groups that are being targeted with slurs and with policies designed to make them even more vulnerable.  The CRPD could also help us with this by the way; Article 8 on awareness raising calls for campaigns throughout society to foster respect for the rights and dignity of persons with disabilities, to combat stereotypes, prejudices and harmful practices against persons with disabilities in all aspects of life, to promote awareness of the capabilities and contributions of persons with disabilities, and to encourage the media to portray persons with disabilities in a manner consistent with the CRPD.

Senator Harkin and all those who are considering ratification of the CRPD: I will close by reminding you of a call put out during the CRPD negotiations by the International Disability Caucus, which called on the negotiating parties not to leave any persons with disabilities behind, but to have a “Convention for all.”  We distributed this special issue of the IDC newsletter at a time when the rights of people labeled with psychiatric disabilities were in jeopardy during the negotiations.  I am offering it now in the hope that it will again to create an inclusive consensus on the highest ground, as it did then.

International Disability Caucus Special Edition January 31, 2006

NOTHING ABOUT US WITHOUT US

IMAGINE

Imagine if someone else was making decisions for you. They could decide to take you away, lock you up, not listen to you, give you medication, block you from doing your work and living your life with your body and mind the way they are.

WOULD YOU WANT THIS TO HAPPEN TO YOU?

  • Wouldn’t you have the feeling that you have lost your dignity and want it back?
  • Wouldn’t you feel your integrity has been violated?
  • Wouldn’t you want to have support in making decisions without beingtaken over and to ask for help without being seen any the less for it?
  • Wouldn’t you want to maintain your inherent dignity and be supported tomake your own decisions?
  • Wouldn’t you want to retain your integrity and continue to be you?Would you want a Convention that allows forced interventions and does not respect your inherent dignity as a person?The principles established in this Convention are universal and will apply to all human beings, as much to you as to me.

    Let us make a Convention for a world where we can all grow and develop with mutual support.

    IMAGINE A CONVENTION FOR ALL

Do the right thing, Senator Harkin.  Ratify the CRPD without the destructive RUDs and with a commitment to full implementation in the context of an international dialogue with the Committee on the Rights of Persons with Disabilities, with the disability movement(s) in other countries, and with U.S. civil society especially disabled people’s organizations, and including those of us who have fought for the CRPD and shaped it from its inception.  

Sincerely,

Tina Minkowitz

President, Center for the Human Rights of Users and Survivors of Psychiatry

23 COMMENTS

  1. Tina, if this is too personal, please forgive me. I am just wondering what effect your experiences with the psychiatric system had on your family dynamic. For myself, my parents and I have made amends but it took years for me to forgive them. One of my biggest gripes with psychiatry is that they place one’s allies (in my case, my parents and then later my husband) on their side. I fear that this becomes possible in part because the people around the person with MI are the most inclined to believe the bioreductionist stuff the psychiatrist spouts. No parent wants to look at the link between childhood stress/abuse and later psychological disorders. Like to point out here both that I love my parents very much and that I did not come from an abusive home in the sense of physical or sexual abuse but nevertheless it was a crazy making environment that left me ill-equipped to handle the challenges of early adulthood when my madness started.

    • Francesca,
      I’m pretty certain that is the typical MO of the psychiatric community, at least that’s what happened to me, too. A therapist, whose goal it was to cover up the sexual abuse of my child for her pastor (she, of course, did not divulge to me her conflict of interest). According to her medical records, she went out and got a list of lies and gossip from the people who abused my children. She defamed me to my husband with this list of lies and gossip, misdiagnosed the common adverse reactions and withdrawal symptoms of a bad drug cocktail, given by a PCP who was paranoid of a malpractice suit because her husband had been the “attending physician” at the “bad fix” on a broken bone, as “bipolar,” and mandated immediate drugging. She defamed me to my mother, and the rest of my family. This destroyed my husband and my marriage, although we stuck it out for the kids. Pure evil treatment of other human beings, IMO, the “dirty little secret of the two original educated professions.” Shame on the unethical doctors and religions.

    • I can say for myself that I had a major quarrel with my family and a friend over the fact they have shared my personal details with the psychiatrists against my will and when I was incapacitated. That felt like even more violation to me than the physical torture that I had to endure. I understand that they did it because they thought that if they don’t comply it will be even worse for me and them but I still cannot completely get over it.
      The whole experience left me angry with the whole world: my family, my friends for failing to fight for me and complying with the orders, the whole society and of course the so-called doctors. In fact I am still angry because I did not get any justice for what was done to me and I am unlikely to get any.
      It’s a catch 22 – nobody is willing to admit they did anything wrong and if someone flips out at the injustice and does as much as even shout at them (not mention fight back) it’s your craziness. In fact if I were really dangerously mad the doctors in this hospital would be now dead or seriously injured and not walking happily around and traumatising other people. That’s probably the best proof I’m sane enough but in the same time it left me with the anger and feeling of injustice. I am looking for a way to turn it into something positive but I can’t help to feel like my effort cannot not accomplish much.

  2. My family had no access to me, much less power over me, because I was too sane to subject myself to their control issues. But, their desires to control me weren’t necessary, because I was not sane enough to keep myself from surrendering to psychiatry for a depression that was an iron deficiency and a diagnosis that was based on my reaction to an antidepressant.

    “Bipolar disorder” has been quite the jackpot for BigPharmaPsychiatry because any refusal to take the “medicine” is a symptom of the “illness” and a desire to be “manic” even if you’ve only been manic once in your life, on an antidepressant. Any low functioning is evidence of bipolar disorder. Any high functioning is evidence of bipolar disorder. Any failure to agree that you’re bipolar is evidence that you “lack insight”. Who could escape this? How? I suspect that someone given this label would need a lot of money and influence to have it removed.

    Under the influence of large doses of lithium— than none of three psychiatrists who prescribed them had told me might be toxic, and none of those three ordered blood tests for toxicity— the who I was was gone. I couldn’t read anything more complex than a murder mystery. I couldn’t write a grocery list, much less anything else, because my hands shook so badly. I couldn’t rally myself to get out of a bad situation that I would have not stood for for five minutes undrugged. I assumed everything effective about me had been destroyed and was very happy to see it back shortly after discontinuing my “treatment”. I was all me, and got myself out of a horrible situation in under a week.

    I wish I could say that my life as a mental patient ended there, but it did not. I allowed myself to be put on rotating cocktails of neuroleptics, antidepressants, antiepilectics, benzos, and what-not for an additional five years out of fear of becoming psychotic— the kindling theory of bipolar disorder. Two years ago I did have a psychotic episode. I have to consider the possibility that the drugs made me more likely to have a psychotic break. Or perhaps I really am bipolar? I no longer consider myself to be bipolar in any way that the medication and the obliteration of me would be worth it. If, having a psychotic episode every ten years were the price of not being doped, it would be worth it to be me with the agency I need to deal with me and my life.

    Though I understand my psychosis as reactive to extraordinary stress that included hypervigilance from PTSD— the content of the entire psychosis was that trauma— I cannot convince a psychiatrist that that is the case. Though a prescribing psychiatric nurse, my primary care physician, and three neurologists see no reason for me to submit to psychiatric “care”, I would be helpless in front of a psychiatrist. The worst thing, besides my trauma, that ever happened to me is bio-psychiatry. My trauma was overwhelming, at times, but it never made me incapable of working or too incapacitated to get away from an abusive boyfriend. None of my other boyfriends or my husband had ever raised their voices to me, and there I was stuck with a sociopath, feeling and being helpless while being battered because the lithium made me useless even to myself. How did that help me? I volunteered to be a victim of psychiatry. Had I had a computer and the internet then, I would have informed myself, like I and countless others are doing now, and I would have spared myself of being robbed of myself, and given a drug for every side effect of the previous drug.

    Biopsychiatry was safer in the dark. Seeing it threatened gives me hope for myself and countless others. Seeing it robbed of its power to imprison and force drugs upon people is necessary to right a great social injustice. Seems our society always needs for some demographic to be fair game for singling out and abusing by giving some arm of society control over them and the power to do whatever they see fit to the “other” without legal challenge, so that violence can be done to them, in the name of preventing violence. Isn’t it ironic that the individuals who do the most violence are the last people who would see a psychiatrist, unless it helped them avoid jail? Isn’t it ironic that psychiatry is ruled by corporations now, that are effectively psychopaths who are only interested in enriching themselves at the expense of the people they claim to be helping?

    Thank you for your work, Tina. Bringing bio-psychiatry and the abuse and coercion that goes with it into the light is giving truth its due.

      • I’m merely a person who was deemed to be a “judge,” according to 40 hours of unbiased psychological career testing,” prior to my defamation by psychiatric “practitioners” who wanted to cover up the sexual and spiritual abuse of my children and me, by a US religion that defrauded my family out of millions claiming to be Christians. But who is actually working to cover up the sexual abuse of my son by denying my daughter a baptism at the exact moment the second plane hit the second World Trade Center building on 9.11.2001. God, if there is one, had a reason to be pissed at the US Christian religions, at 10am on 9.11.2001. And the current “corporatetocracy” that is in control.

    • “Bipolar disorder” has been quite the jackpot for BigPharmaPsychiatry because any refusal to take the “medicine” is a symptom of the “illness”
      Isn’t that true for any psych illness? I mean either you admit you have it and need treatment or you don’t admit having it and you have no insight and also need treatment. Catch 22.

    • Btw, if there are such people as psychopaths with no empathy and no consistence (which I believe might well exist knowing one who behaves like a classic case) aren’t they the ones who are setting the standard for what is “normal” and sane in this day and age? You’re not supposed to have emotions, you’re not supposed to be depressed because your relative died, you have to behave yourself according to norms no matter what is going on. I have a feeling that psychiatry is a great tool for people like that to cover up for their wrongdoings and abuse and I speak from experience now, both mine and my friends.

      A girl trying to commit suicide because of sexual abuse by her grandfather ends up in psych ward, drugged and labelled and the perpetrator gets sympathy and cries crocodile tears – a respectable member of community. Another one getting beaten up in her home and cutting herself getting locked up for months against her will. There is so many stories like that and it’s the victim who gets blamed. It’s the victims who need the intervention, who need to learn how to “cope in a socially acceptable manner” and adjust and blablabla but not the people who did it to them or the sick, pathological society which turns a blind eye. Who is really insane here?

  3. The final hospital visit , the time I drank to much to the point I couldn’t eat do to lack of apatite from drinking or sleep without without a drink do to alcohol induced insomnia or wake up and not have drink to quell the anxiety caused by the drink the day before, I went to the E.R to get detoxification. I was caught in that circle and had to end it.

    I was doing just fine off the Clonopin , Remeron , Dexadrine and Zyprexa I foolishly ingested for years. Like many people who have recovered from dependence on benzodiazepines and I believed it would be alright to just drink, I never had a problem with it before my Clonopin dependence or psychiatric medication injestion.

    Wrong, something changed in the way I react to alcohol, it starts to create more anxiety than I can drink away. My six pack at night days are over.

    The nightmare began I think when my mother told the hospital I was transported to from the E.R I was “bipolar” , try going to a reckless psychiatrist for insomnia and end up on Clonopin , Remeron , Dexadrine and Zyprexa and NOT get rather bipolar.

    Those “meds” landed me in the hospital a few times years before, I was never even anywhere near a psych hospital before taking them. If you said bipolar I would think of a magnet or penguins or bears. I knew nothing.

    So it was a nightmare, I had years of my life ruined by those meds and was off them for years, knew the medical truth about psychiatry and medication and had to face down the “take your meds or we will inject you” routine on top of all the wicked anxiety from my failed attempt at controlled drinking and the anger from being subjected to the squat and cough strip search, fear of the actual forced injection ‘needle rape’ and an even worse fear of taking the amount of medication they prescribed if I did comply. Just the one drug I took before was at way to high a dose and I was expected to take another I was never exposed to before also at a high dose plus Haldol. I was scared. The ‘needle rape’ was never carried out but I was in that hell hole for almost a month, my records also said ‘resistant to placement in treatment’ with their friends who send kickbacks !

    What I wanted to add to this thread was that the accusation by a parent of ‘bipolar’ or ‘mental illness’ sure does create nightmares behind locked doors.

      • My family was, like me, was under the delusion that all doctors, including psychiatrists, took the Hippocratic Oath. How embarrassing the psychiatric industry believes the Hippocratic Oath is “irrelevant to reality” when it comes to covering up child molestation by religious leaders and easily recognized iatrogenesis by paranoid of malpractice suit doctors. “Not mom’s fault,” a societal problem, I agree.

    • Drugs (which I didn’t want to take and were pretty much forced on my be someone whom I was involved with at the time or directly forced by psych hospital staff) only left me with panic attacks, attempted suicide, restless leg syndrome, anterograde amnesia and chronic fatigue. Some of the effects are still not completely gone though all they will tell you is things like “benzos don’t cause amnesia” or “if you stop Zypreza, the restless syndrome will stop as well and if it doesn’t it can’t be the drug”. Even though I never took these drugs for more than a month (I didn’t like hat they did to me and had a feeling they were not what they were claimed to be) I was still affected by them and only badly. I can’t imagine taking them months and years on end.
      Coercive psychiatric treatment is torture and if there is one crime I would compere it with it’s rape. It is such a violation that even a short term experience can traumatise people for life. The fact psychiatrists will never admit (I challenged a few on that – one of them literally threw me out of his office).

  4. MIA should do an article about Medication Anosognosia,

    Medication Anosognosia is a common symptom of taking psychiatric drugs, I could not see that I was better before taking them and therefor stop taking them and go back to the way I was. Instead I continued to let that doctor really screw me up. I had like rear view blindness.

  5. Thanks Tina, for sharing and caring and advocating in our common cause. Nothing at all justifies the lack of official attention from the behavioral health care professions to the emotionally traumatic confrontations with the standard delivery of services on offer.

    The socially deleterious consequences of seeking help, the ego games attaching to the compliance dogma, the practical failure of having no personal interest expressed beyond the point of getting your label–the real engine of stigma are the professionals who are not advocating for rights with survivor groups and who talk of stigma just to divert attention from themselves.

    As your readers can honestly say, in asking for help with something that you feel is wrong for you with your mental life, you invariably face accusatory ritual abuse about shortcomings in the kind of obedience and gratitude you intend to show toward the professionals who control your freedom.

  6. The only sad things is that ratifying the convention is not likely to change much if anything at all. There are a lot of countries which happily ignore what they are obliged to change. Take Austria: they ratified the convention but still have all forms of coercive treatment in place: they can basically lock up people who were deemed mentally ill and committed a crime indefinitely, they use torture (net beds, forced medication, 4-point restraints), they have do-called Unterbringungsgezetz which allows the police to force you into the psych ward, sometimes for reasons like a depressive post on facebook (real story from a few years back), they can keep you in hospital against your will and under meds with only sham proceedings. I’d love the convention to actually mean something.

    • What about? I live in a country where it’s not the police that takes you away but the police calls the ambulance and escorts it with you inside to the facility. It’s no better. Given the fact that the police here is extremely well trained and the psych staff is often abusive probably worse.
      I can’t see how stories like that can justify the coercion used on thousands of people and well documented abuses which ruin people’s lives, physical health and sometimes kill them. Even if you admit there are cases like that – you can’t avoid every case of suicide and every case of someone running around naked. The coercive system only makes things worse and not only for people like this poor girl but for many more people who could easily get through experiences like that without it.
      If there were sensible alternatives, like Open Dialogue maybe this girl would never need to be involuntarily committed in the first place. She wasn’t violent, wasn’t trying to kill herself. There are ways to persuade people, maybe sometimes even trick them a bit into doing stuff voluntarily (even if you think that meds are the only way – they should be used as a last resort when everything else fails). If there were safe places she could go and have therapy which are not scary psych wards where they strip you and inject you with drugs against your will leaving you traumatised sometimes more than anything the “illness” did it could be easier to get her through the episode. Anything short of someone waving a knife trying to kill you should be voluntary.

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