by, Renee Wood

A friend, whom I love to have conversations with, was telling me about a presentation he gave, mostly for parents of children with disabilities.  He said that face to face he received positive feedback for the presentation, but in the written evaluation a couple people said there was too much concentration on Pennhurst.  What they wrote really wasn’t a big deal for the overall presentation – no more than an observatory comment.  However, never hearing about Pennhurst, or seeing the documentary about this State institution for people with Developmental Disabilities, I had to view the documentary for myself to understand the idea of too much concentration on it. 

Seeing Willowbrook (another documentary about a large State institution for people with DD, which closed after Geraldo Rivera’s report of the atrocities inside) was something that you “instinctively knew” about institutions, especially as a person with a disability.  Seeing Willowbrook brought it to a vivid reality.  Pennhurst was worse in that hearing some parents and professionals either justify or deny the inhumane conditions that went on in this place, as well as many other institutions, bewildered me – you can’t believe what you’re hearing when they have documented proof of what went on in these institutions.  I still hear some of the exact same words from parents today in State hearings about; “What wonderful programs ICFs have”, while ignoring the atrocities that go on in the dark. 

Yes, they physically cleaned the inside of these institutions, bathed, clothed, provide better nutrition and medical care for its residents.  But flowers, perfume and candy bars only mask the fact that, when push comes to shove, these residents are still “owned” by the non-disabled who get paid to control the day to day operations of these places of oppression.  A form of slavery, if you will, when a certain group, seen as “higher”, is in charge of those thought of as “lesser”. 

Institutions (5+ initial strangers forced to reside together), whether orphanages, State Institutions, Nursing Homes or ICFs are breeding grounds for abuse and neglect.  Why? The power structures with those being kept (cared for) at the mercy of the non-disabled placed over them, cannot relate to those they are in charge of, so they are “other”.  Whether “other” means a gift from God, a demon or something in-between, doesn’t matter – they are just something other than those like you, so it becomes easy to justify a life for them, which you yourself would not want/tolerate.  Until long-term care facilities are run by those who reside in them, there will always be systemic oppression of rights, abuse and neglect. 

Plus, if one needs any type of governmental assistance due to disability, the government has ensured they can’t accumulate resources (wealth).  This means people with disabilities who are actually living the life, have no means to operate places where other people like them reside, to provide an environment of freedom and opportunity.  However, even if one with a disability could accumulate the resources necessary to operate places where people with disabilities reside, the Rules have been written over the years that ensures control over these residents to lessen the liability of their choices!

In the documentary the direct care staff that were interviewed, said they went to Pennhurst because they cared and wanted to help, but had to overlook many things.  From the way they justified certain things, it seems they were slowly indoctrinated into “This is just the way it has to be for these people”.  It amazed me that the same person could say, “It really was a nice place for them”.  And then go on to describe that there was a lot of non-consensual sex (better known as rape) especially at night when there were few staff.  They went on to say that many babies were born at Pennhurst, and I quote; “[babies were] either adopted out, kept there, or…. should I say it?  Some were incinerated”.  Sounds like my #1 place to live – probably not even my last place to live!  I rather live in filth, under a bridge where at least I have the perception of freedom!

In the Pennhurst documentary, what seemed to be an economically affluent mother, advocated and praised Pennhurst for its “superb medical care, programs and therapies”.  While at the same time former superintendents and others were saying residents only seen a psychiatrist for 3 minutes once a year, had 10 minutes to eat food mashed into one bowl (dessert and everything), and sexually abused by other residents.  What is the reason behind such obvious cognitive dissidence?  Parents have to see “good”, even when there isn’t much because there isn’t any choice, especially if they are unable to properly care for their loved one themselves (I’ve seen adult children practice cognitive dissidence when forced to place a parent into a nursing home, which they knew damn well didn’t provide good care, because they honestly had little choice).  Not too many people would say, “I put my love one in this horrible place because I had no other choice”. 

How do we change a system, controlled by non-disabled people, that is supposed to support and empower people with DD to have the opportunity for the same life as those without disabilities, when in reality, often oppresses these opportunities?  Six years ago, in the heat of passion, when questioned me about how to change an established system – they said, “Renee, you just can’t blow it up”?  I thought hard about that, and wrote in a blog about self-advocacy; “Let’s see, a well-established system, that routinely; robs one of self-worth, destroys self-esteem and instills the ideology (by deed, rather than by word) that your functional limitations, make you less than those with higher functional abilities, and, in essence, says, “Please take your seat at the bottom, and we’ll care for you, and train you” . . . . we can’t, or shouldn’t just blow it up!?  …I said, “Yes, blow it the fuck up”! 

Amazingly, many of my suggestions from 6 years ago on how to change (blow-up) the DD system have come to fruition, such as; educating people with DD outside the system about their rights, people with DD fearlessly telling their stories in public forums (so people with DD are not isolated in a closed system) when the system rides herd over their life, and demand mandatory voting seats for people with DD on County Boards.  Never did I dream these would be accomplished in several years or I would have dreamed something bigger!

Our work for freedom is not over – we must move on to congregate, or congregate-like settings/care.  For many reasons, besides pay, the direct care worker shortage is going to get worse, before it stabilizes in about 2040, when there will be a good amount of younger workers and the older population has leveled off.   Until then, many who require hands on care, will have no choice but to share these workers.  To save valuable time with workers commutes, many people with disabilities will have to live in close proximity to one another and share workers.  This could become an institution – unless we change the structure that put people with disabilities in charge and all workers, including administrative management who would be required to answer to a board of 51% of people with disabilities. 

It has been difficult to prepare people who fought so hard for the right to receive services in the community, for the reality that there just won’t be enough direct care workers to serve us the way we’ve grown accustomed to, or at least envisioned.  What frightens me the most is people with disabilities are not listening to the facts that, no matter how much you pay – there simply will not be enough workers to care for our needs in the way we currently do home care.  If we are not on the forefront of this, we will have to except what the government designs for us – and make no mistake, they will be institution-like settings.

I don’t know what a new Home and Community Based care system will look like, I just know people with disabilities need to be on the forefront of owning and designing it, or it will be what non-disabled either believe to be what we would want, or what would be best for us.  Institutions are not by definition; ”Four walls with large numbers of people behind them”, otherwise college dorms would be considered institutions.  What constitutes whether something is an institutional setting, or not, is; who’s in control of the people’s lives within that environment, the freedom to choose without guff or paperwork, does management look and function similar to the residents, are there restrictions on movement or associations, etc.?  There are many more things that make up an institution, besides four walls filled with strangers, the majority of whom did not choose to be there. 

Change is hard, especially when you just got what you fought so long for.  My people, we must arise to this task of changing institutions to “consumer control” which will eliminate institutions!