International Day of Mourning and Remembrance: Institutionalized Lives of People with Disabilities–Forgotten Lives and the Ones Who Fight Back

Posted on 23 January 2012. Filed under: Announcements, Cognitive Impairments, Cross-Disability, Events and Conferences, Human Rights, Inclusion, Opinion, Psychiatric Disabilities | Tags: , , , , , , , , , |

Blogger Dave Hingsburger is trying to make today, January 23, the first of what he wants to be an annual event in which we remember together people with disabilities who have lived in institutions and, in some cases, died in them.  Another blogger, Amanda Baggs, has also written extensively about her own experiences inside places that others label as “institutions”–and also some places that weren’t labeled “institutions” but were just as bad: I encourage readers to read today’s post at her blog, “What Makes Institutions Bad.”   Today, in Dave’s proposal, is meant to be a day to remember the people that we were meant to forget: people placed in institutions, not to help them, but to isolate them from so-called “normal” people.  And, it is meant to remember people who have been “put away” supposedly for “their own good,” people who others think “cannot live in the community” as if being human were not enough to qualify one to live among other humans.  It is meant to mourn the lives that people with disabilities could have led if they had been allowed to live in their own homes and allowed choice and self autonomy.  It is important to emphasize that the day is meant not only to consider people institutionalized years ago, in a time we think we can safely forget because we assume it belongs only in the past.   It is also meant to consider the millions of people worldwide, in both developing and also developed countries, who continue to be institutionalized today due to no crime other than being different, being someone who others has labeled as “disabled.”

Dave also means this day as a day to celebrate people with disabilities who have fought back against the mentality that strives to push them to the margins of society, making it easier to institutionalize them.  In this context, Dave Hingsburger mentions a woman named Sandra Jensen who fought literally for her life when she was initially denied a heart transplant simply because she had Down Syndrome.  Sandra, already a disability rights advocate, fought back and won her transplant in 1996–and also won change in organ transplant policies in Canada.  In addition to individuals Sandra Jensen, I can also think of certain organizations that work hard to promote de-institutionalization and other closely related causes:  Disability Rights International (DRI), ADAPT, MindFreedom International, World Network of Users and Survivors of Psychiatry (WNUSP), various chapters of People First worldwide, the Autistic Self Advocacy Network, and others.   I have probably missed many other organizations that are also devoted to ending institutionalization: feel free to mention them in the comments area below.

If these organizations don’t choose to carry forth Dave’s proposal, or if these international and national bodies like the concept but choose a different date or take the idea in a different direction, then Dave’s International Day might well still catch on at some local organizations scattered throughout Canada, US, the UK, and Australia.  Dave, after all, has been in the field of intellectual disability and disability rights for more than 30 years: he has delivered hundreds (possibly thousands) of lectures around the world, his blog reaches thousands more readers every month, and some of his many books are required reading in some training programs for future service providers who will be working with people with disabilities.  Dave is certainly not without some clout and influence all on his own.   But without the support of large and highly visible organizations, his concept could remain a relatively obscure event known only in certain circles in certain cities in, predominantly, English speaking developed countries.  It will spread only slowly, if at all, to non-English speaking countries or to developing countries.

Also critical to the success of this event in the future is the International Disability Alliance (IDA) and its member organizations.  IDA, as many of We Can Do’s more regular readers probably already know, is a major umbrella organization for various international disability organizations that include WNUSP (listed above), the Disabled Peoples’ International (an organization run by people with various disabilities, with national assembly members in more than 100 countries), Inclusion International (representing people with intellectual disabilities and their loved ones), World Federation of the Deaf, World Blind Union, and others.  Each of IDA’s member organizations themselves have many more member organizations in dozens of countries around the world, and many of these in turn have member organizations at the local level in their countries.  If some of these organizations adopt Dave’s idea, then many more organizations around the world would surely also pick it up as well–whether their local language is English, Spanish, French, or something else, whether in developed countries or in developing countries.

Is this day an event that should catch on more widely?  I hesitate to issue a firm position on this issue.  I do feel that it is worthwhile to have some kind of event that could prompt us, not only to mourn people who would otherwise be forgotten, and to celebrate people who have promoted the cause of freedom, but also to take some action that could help set free the many people who are still institutionalized against their will today.  For this reason I do like Dave’s general concept and feel it is worthwhile putting it in front of the readers of We Can Do for their consideration.  But I also feel that the issue of how to frame such an event, how to promote it, what activities should be done to acknowledge it, and what date it should be held on, should ultimately be determined by people who have themselves experienced institutionalization, or been threatened with the possibility.  People with intellectual disabilities who are confined because they learn more slowly than others.  People with psychosocial disabilities and people on the autistic spectrum who are confined because others view their behaviors as “bewildering” and would rather not have to see them at all than try to understand.  People with mobility impairments, and people who are acquiring a range of conditions related to old age, who are institutionalized because government legislation, budgeting policies, and the medical profession make it easier to place them in nursing homes than to get support to continue living at home.  People who are deaf, or blind, who may be mistaken for having other disabilities, or who others may assume are incapable of learning or being independent because they cannot hear or see.  Organizations such as People First, WNUSP, MindFreedom, ASAN, ADAPT, and other international and national organizations run by people who themselves are most commonly targeted for being institutionalized come to mind.  I think this is a choice that needs the involvement of many advocates and leaders around the world, not just one man–even a powerful leader like Dave Hingsburger.  And not just one woman either, including me as the author of this blog site.

For now, readers may want to read a few blog posts that Dave wrote about what today’s date means to him and why he feels it is important to have an International Day of Mourning and Remembrance:

January 23: International Day of Mourning and Memory in which Dave first sets forth his proposal.  Note that he seems open to revising the concept, or at least the name, for future years.

Cousin Mattie: The International Day of Mourning and Memory — Dave’s post from today, January 23, honoring the day itself.

She Never Knew: The Interviews — in which Dave presents an interview he conducted with a woman who performed a song that Dave feels fits in well with the spirit of the International Day.

I also encourage readers to consider taking a few moments–or a few hours, or days–to learn more about the reality of institutionalization today and what is being done to end it.  A few of the links from above are good resources.   Disability Rights International (DRI) has a huge collection of reports and videos documenting institutionalized abuses from around the world, from Ukraine to Mexico to the United States to Romania to Paraguay and elsewhere.  Many People First organizations fight against the institutionalization of people with intellectual disabilities.  The Global Disability Rights Library has content and links related to institutionalization of people with disabilities–particularly try the information portal of the same name (Global Disability Rights Library) and check under specific disabilities for psychosocial disabilities and intellectual disabilities.  Also in the same information portal, check the section on Independent Living for some of the solutions that allow people with mobility impairments and a range of other disabilities live freely in the community instead of in nursing homes (the link goes to GDRL’s primary page on independent living, but don’t miss the sub-sections under this page with more resources).  And check out some of the personal stories on MindFreedom’s website.

A blog post on institutionalization from me would be incomplete without also mentioning another blogger besides Dave Hingsburger who has taught me a great deal about what it really means to be institutionalized:  Amanda Baggs.  Amanda has herself been institutionalized: although most of her experience in places others would recognize as institutions was in the 1990s, she still knows people who have been institutionalized much more recently than that.  And she has had experiences in places that, although technically are not institutions, can be harmful in ways she feels is very similar.  Amanda’s entire blog is very well worth reading: I regularly encourage people interested in disability rights to read her blog front to back, or back to front, or inside out, or outside in, or sideways or upside down or right side up or any way at all as long as they read it, throughly and often.  Both Amanda and Dave are in developed countries (the United States and Canada, respectively) and I suspect most of their contacts and most of what they have learned about disability rights is also somewhat oriented to developed countries as well.  But many of the concepts that both of them wrestle with day in and day out on their blog sites and elsewhere, much of the philosophy they espouse, the values they uphold, and their insightful analysis of how even very lovely, good, kind people can still do terrible things are not bound to any one country.  I suspect that disability rights advocates from any country, whether developed or developing, will find ideas of value both in Dave’s blog and in Amanda’s blog.

Here are a few of Amanda’s blog posts that have helped teach me about what it is actually like to be inside an institution, or in an environment that is harmful in similar ways:

What Makes Institutions Bad (today’s post)

Outposts in Our Heads

Everything I Need to Know in Life I learned in Institutions

Identical Behavior, Constrasting Responses

What it Means to Be Real  (These events were at a day program, not technically at an institution. But apparently much of the way people in the program is treated is similar)

Being an Unperson (Not specifically about institutionalization, but the process of dehumanization described in this video does occur in many institutions)

And one more from Dave, from the perspective of a person who once worked in institutions early in his career:

Patty  — In this video (deaf and hard of hearing people can read the full transcript below the video) Dave describes an incident in which he reached out to Patty, a woman in the institution where he worked, and the reactions of his co-workers.

At least one more blogger has also blogged about this day: International Day of Mourning and Memory at Lounalune.  And one individual, Kristine Snider, sent Dave a video in honor of the day.

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NEWS: Bulgarians with Mental Disabilities Suffer Inhumane Treatment

Posted on 22 February 2009. Filed under: Cognitive Impairments, Eastern Europe and Central Asia, Human Rights, News, Psychiatric Disabilities | Tags: , , , , , , , , , , , , , , , |

Geneva, 3 December 2008

On the International Day of Persons with Disabilities, the World Organisation Against Torture (OMCT), the Bulgarian Helsinki Committee (BHC) and the Mental Disability Advocacy Center (MDAC) come together to express their serious concern over the situation of persons with mental disabilities, one of the most marginalised and discriminated groups in Bulgarian society.

In a series of letters to members of the Bulgarian Parliament and Government, officials and elected representatives in the European Union, and the United Nations Special Procedures mandate holders, the three organisations underline that persons with mental disabilities in Bulgaria, “frequently face social exclusion and severe human rights violations, including violence and ill-treatment”, and express their concern that, “[i]nadequate legislation together with entrenched institutional policies and practices also compromise their socio-economic well-being, as well as that of their families”.

Regardless of the skills and capabilities which persons with mental disabilities in Bulgaria possess, they are often deemed incompetent, deprived of their legal capacity and placed under guardianship. Bulgaria’s outdated legislation on deprivation of legal capacity removes a person’s right to make their own decisions and denies the exercise of their basic human rights, including the rights to marry, vote, work, take legal action and seek judicial remedies. Deprivation of a person’s legal capacity also impedes their rights to a fair trial, to own property and to respect for their personal and family life. In most cases, persons with mental disabilities who are placed under guardianship in Bulgaria are forced to live in large and remote residential institutions and to remain there for the rest of their lives. Once institutionalised, they are at risk of ill-treatment from staff and subjected to prison-like regimes. Indeed, living conditions in some of these institutions have been deemed to amount to inhuman and degrading treatment.

Please read the rest of this news release from the World Organization Against Torture at their web site by clicking on the following URL: http://www.omct.org/index.php?id=&lang=eng&actualPageNumber=1&articleId=8204&itemAdmin=article

I received this press release via several sources including the IDA_CRPD_Forum listserver; the AdHoc_IDC listserver; the RatifyNow organization’s listserver; and others. Only the first two paragraphs is quoted here. Please follow the link provided above to read the full story.

Note that “mental disabilities” is often used to refer to both people with intellectual disabilities and also people with psychosocial disabilities. Although these are very different disabilities, both populations in many countries are frequently locked up in the same institutions and may experience similar types of human rights violations.

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REPORT: Violence Against Disabled Children

Posted on 8 March 2008. Filed under: Academic Papers and Research, Children, Cross-Disability, Human Rights, Reports, Resources, Violence | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |

UNICEF has released a summary report entitled, “Violence Against Disabled Children” (PDF format 245 Kb), with the subtitle “UN Secretary Generals Report on Violence against Children, Thematic Group on Violence against Disabled Children, Findings and Recommendations.”

The first half of this report, released in July 2005, summarizes what is known about violence toward children with disabilities at home, in schools, in institutions, in the criminal justice system, within the broader community, and at work (in child labor situations). Children with disabilities are known to be at higher risk for abuse, partly because they may be perceived as “easy victims.” Also, abuse toward disabled children is less likely to be investigated or persecuted, which means abusers know it is easier to escape consequences even if the abuse is discovered.

Many children, with or without disabilities, may face adults who fail to listen or to believe them when they try to report abuse. But children with disabilities face additional barriers. As one example, some adults may mistakenly assume that a child with intellectual disabilities or psycho-social disabilities must surely be “confused,” or unable to tell right from wrong, or unable to make their own decisions about what is done to their bodies.

Disabled children may also be targeted for child murder, either because parents perceive them as bringing shame to the family or because adults may be convinced they will be “better off” dead than disabled. In countries where many men share the belief that sex with a virgin will “cleanse” them of HIV/AIDS, girls, boys, and adults with disabilities may be targeted for rape on the assumption that they do not have sex. Children with disabilities also may be forcibly sterilized, sometimes as early as the age of 8 or 9.

The report makes a series of 13 recommendations for families, communities, policy makers, governments, advocates, Non-Governmental Organizations (NGOs) or Civil Society Organizations, United Nations agencies, and other stakeholders with an interest in preventing violence toward disabled children. These recommendations include, as a few examples: increasing public awareness; reforming legislation so that the laws can better protect children with disabilities; advocating change to improve inclusion of disabled people throughout society; improving reporting mechanisms so that people who become aware of abuse have a way to report it; closing down institutions and integrating disabled children into the community; but also improving government oversight of institutions for as long as they continue to exist.

The 33-page report can be downloaded in PDF format (245 Kb) at:

http://www.unicef.org/videoaudio/PDFs/UNICEF_Violence_Against_Disabled_Children_Report_Distributed_Version.pdf

People interested in the topic of violence against children may also wish to read an article on violence and disabled children in the 2003 issue of the joint Rehabilitation International and UNICEF newsletter, One in Ten:

http://riglobal.org/publications2/10_24.htm

Also of possible interest:

A recent report, Promoting the Rights of Children with Disabilities could give ideas to advocates and families for how they can use international human rights laws to protect the rights of children with disabilities.

Learn about a report on human rights abuses of disabled children and adults in Serbia, including the use of violence.

Read a paper on Violence Against Blind and Visually Impaired Girls in Malawi

Those interested in abuse and human rights violations in institutional settings may also wish to read the following first-hand accounts written by the same author, Amanda Baggs. These are well worth reading. Some talk about the more obvious kinds of violence that most people are used to thinking of as “abuse.” Some talk about forms of psychological manipulation that are so subtle that outside observers might miss them. But Amanda Baggs makes powerful arguments for why “outposts in our head,” or the uses of power nevertheless can be at least as important for anyone who cares about the well-being of children (and adults) with disabilities. Click on any title below to see Amanda Bagg’s post:

Why It’s So Hard to Write Directly About My Life
Outposts in Our Heads: The Intangible Horrors of Institutions that Must Not Be Forgotten
The Meaning of Power
Extreme Measures, and Then Some



We Can Do learned about the UNICEF report on violence against disabled children from the AskSource.info database. Asksource.info provides a library of information, resources, and toolkits related to people with disabilities and to health issues, particularly in developing countries.



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This blog post is copyrighted to We Can Do (wecando.wordpress.com). Currently, only two web sites have on-going permission to syndicate (re-post) We Can Do blog posts: BlogAfrica.com and www.RatifyNow.org. Other sites are most likely plagiarizing this post without permission.

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NEWS: Human Rights Violations of Argentines with Psychosocial, Mental Disabilities

Posted on 25 October 2007. Filed under: Announcements, Cognitive Impairments, Human Rights, Latin America & Caribbean, Opinion, Psychiatric Disabilities, Violence | Tags: , , , , , , , , , , , , , , , , , , , , |

SEGREGATED FROM SOCIETY IN ATROCIOUS CONDITIONS – ARGENTINA’S MENTAL
HEALTH SYSTEM VIOLATES HUMAN RIGHTS

WASHINGTON, DC—September 25, 2007— Argentina is among countries with the most psychiatrists per capita in the world—yet people detained in the country’s public psychiatric institutions are subject to serious human rights violations. Ruined Lives, an investigative report released today by Mental Disability Rights International (MDRI)and the Argentine human rights organization Center for Legal and Social Studies(CELS), finds that 25,000 people are locked away in Argentina’s institutions, segregated from society, many for a lifetime and with no possibility of ever getting out.

Ruined Lives exposes widespread abuse and neglect in these institutions, including people burning to death in isolation cells, complete sensory deprivation in long-term isolation, forced sterilization and sexual and physical abuse. In one psychiatric penal ward in Buenos Aires, men were locked naked in tiny, barren isolation cells with no light or ventilation for months at a time. At another institution, four people died while locked in isolation cells. Toilets overflowed with excrement and floors were flooded with urine.

Investigators found a 16 year-old boy in a crib, his arms and legs tied to his body with strips of cloth, completely immobilized. Staff said he had been tied up since being admitted to the institution more than a year before.

“Argentina’s mental health system detains people on a massive scale without any legal protections,” said Eric Rosenthal, MDRI’s ExecutiveDirector. “The inhumane and degrading treatment we observed is banned by international human rights treaties and should not be tolerated in any society.”

MDRI is an international human rights and advocacy organization dedicated to the full participation in society of people with mental disabilities world wide. For more information, visit www.mdri.org.

CELS is an Argentine organization devoted to fostering and protecting human rights and strengthening the democratic system and the rule of law. For more information, visit www.cels.org.ar.

The report and photographs can be downloaded from the MDRI web site in either English or Spanish.

MENTAL DISABILITY RIGHTS INTERNATIONAL
1156 15th St NW, Suite 1001, Washington, DC 20005
Phone: (202) 296-0800, Fax: (202) 728-3053
E-mail: mdri@mdri.org
http://www.mdri.org

This press release comes from Mental Disability Rights International (MDRI</a).


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