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