Discarding An Old Narrative: Shine a Light on Indignity

Some 30 years ago, some new and innovative approaches were developed to help people with disabilities lead better lives. They involved ideas such as normalization, social inclusion, individualized planning, and supported employment and supported living. These concepts were all based on focusing on the individual and not the disability, and each brought new ways of providing support. As the techniques evolved, they got more efficient, and researchers started to document their effectiveness. Their results showed that the outcomes they produced were much better for people - more wages, good jobs, nice homes, and more friends, and they cost no more when implemented properly.

Fast forward to today. A cadre of professionals, but still a minority to be sure, remain committed to implementing these no-longer "new" ideas. Nearly everyone now knows the terms and supports their philosophy. But the talk and the walk are very different. By and large, most services remain stuck in the 1980s. I can walk into almost any community and find most adults with developmental disabilities living in group homes or even larger settings, attending workshops or day programs, and living lives of isolation. Few have jobs or a real home to call their own. Many earn less than minimum wage, if they work at all. We celebrate the minority who have achieved a better life, but too often selectively ignore the large majority who have not.

Occasionally, we do hear in the media about the incidents of institutional abuse, negligence, or workers earning pennies per hour while agency management make six-figure incomes. These cause outrage, and the response is usually to clean up the situation. We then try to tinker with a model that seems by its nature to invite this type of problem. This leads to statements like "our workshop is not like those dirty sweatshops, it's clean," or "we have 24-hour video surveillance in the residence.." Hmmm… 

But when are we going to examine the model in its full details? What we don't hear can be just as disturbing: the adults who sit coloring because the "clean workshop" has little work; or the resident who sits on the couch because the staff just wants to watch TV. These are not headline events, but they are a slow drip of negligence because we know how to do better. I have come upon these kind of things far too often and too recent, and this type of living is unnecessary for anyone.

We are caught in an old narrative. It goes like this: People with disabilities need special places and special programs. They prefer each other's company. They are too vulnerable to live in the community and are not really productive to be employable. This narrative was codified into law, and policy focused on building specialized facilities. Programs were developed and people were placed into them, based on their label and perceived functioning level. Professionals were trained, many times by entering the system as a staff person, and then learning by watching "how things work here."

Discarding such a narrative and what it produced isn't easy - it takes work. First, you have to produce an approach that is doable and based on evidence that it works. This we have done. But then you have to help people to understand the new narrative rationally, emotionally, and philosophically. Then -and this is the deepest challenge - you have to break down the existing codes, restructure the policies, and retrain the professionals, or hire new ones. This involves resetting expectations, and accepting that what we have, even though it's better than nothing or something even more restrictive, isn't good enough. The new narrative threatens the old and the economics it produces. Even if research says changing services is by far the better thing to do, people tend to discard or discount information that just doesn't fit the narrative they have - a well-studied effect called the confirmation bias.

So, there are at least two basic things we must accomplish to change things:

1. Expose the flaws in the old narrative.

2. Continue to present a compelling new narrative.

So far, advocates have only been doing the second option. I've been told directly, it's too disruptive to rock the boat right now. Too disruptive for whom? In my view, not rocking the boat has kept us from enabling any systemic change. Civil rights didn't come just from talking about a new world of equality. Advocates also had to expose the indignities, inequality, and pervasive inhumanity that was going on every day, in everyday neighborhoods. It was sometimes blatant, and sometimes subtle, but always just as wrong. I welcome your comments.