I hear New Jersey is looking into augmenting its self-advocacy movement with some of the ideas and inspirations from the People First groups that have had success in other states and other countries.

I think that’s a good idea.

Nobody has a monopoly on good ideas. That’s what makes them such useful tools. You don’t have to give up on the ones that are working in order to supplement them with other ones that sound promising. And if you find an idea or some ideas that work better than some of the ones you have, not only is it okay to use them, it’s a bad idea not to.

As I said in my previous post, that’s progress, keeping an open mind to new thinking and moving forward with the best of it.

Of course the main idea driving the best of the People First experiments is not found in the words. Those are very similar to the self-advocacy activities all over, including here in New Jersey. That people with developmental disabilities are individuals not the labels. That they have the right to self-determination and the same access to their communities and the surrounding society as their neighbors do. That they have support services available for those who need and choose them, again as others do in a modern society. These have all been agreed on to greater and lesser degrees, dependent on lingering prejudices and public funding commitments. But essentially we’re all on the same page with this rhetoric now.

However, the best idea of People First I think is in the way it’s supposed to be set up. That idea is simple. A movement by and for people with disabilities. I know that’s what they all say. But I see one thing different here. And it is a key difference. A concept  people throughout the disability industry struggle with. The idea of failure. It is the idea of allowing for failure and disappointments and criticism and restarts, if necessary, and the growth that comes with that kind of process.

The disability industry has evolved around two warring concepts, concepts that are at odds for all of us.

Freedom and independence vs. safety and accountability.

Much of the support of people with developmental disabilities is designed to minimize, and eliminate where possible, the potential for failure and disappointment. This is a perfectly understandable and defensively praise worthy motivation, created and fostered by people of good will and, even more important, professional integrity.

But those goals ultimately undermine independence and self-determination.

Failure is how we learn. That’s the way it works. It’s hard to let that two-year-old toddle unsteadily toward the coffee table. It’s difficult to let that teenager out with the car the first time. It’s not easy to hand over a project to a new employee, without standing over their shoulder; stand back and wait for a person with a visual impairment to ask for the help you think you know they need; listen to your aging parent when they tell you they need to walk from the parking space instead of getting dropped off. It’s a natural, human emotion to want to help those in need. It’s just not always the right thing to do.

Life is a series of calculated choices between freedom and safety. We see that every day in the newsfeeds and everywhere else.

The basic premise of the best of the best of the People First groups seems to rely on one founding principal—that it be for and by the people themselves. And that they be allowed to make choices the overseers might not agree with. Even choices that might fail.

Now I know as well as anyone, and better than many, that publicly funded agencies and advocates have to answer to the powers that be, whoever they be and whenever they be. Any groups receiving such funding and supports have to show that those funds are being used responsibly. he public is going to demand it of them and they in turn are going to make that same demand. Grants, budgets, legislation or whatever is used to set up a fledgling People First group here in NJ would have to take all that into account. I can see the doubting faces of legislative aides or State House staff when they are told that this group may have to fall on its face, or out of its chair, whatever, once or twice before it gets really up and settled.

It might be a hard sell. But there are successful models to look to. They’ve done it and so can we. And I think the benefits would be worth the effort and could be far ranging along unexpected lines we’ve all given extensive lip service to.

It could begin to instill an understanding in the minds of professionals, parents, advocates, officials and the public at large that one of the key freedoms people with dveleopmental disabilities need to have is the freedom to fail. The freedom to be disappointed.

I’m not talking about ignoring the responsibilities to protect people under direct supervision from clearly dangerous situations or putting individuals whose vulnerabilities require greater degrees of care and supervision out on the streets. Using absurd examples like that are dodges. We can explore the real potentials of people with developmental disabilities without resorting to those.

I’m simply talking about opening up some more of those possibilities, such as an advocacy group for and by, really run by, people with developmental disabilities, to expand their experiences, including failure and disappointment, and reduce some of the dependencies inherent in the current systems.

It won’t be easy. And that fact alone should bolster the worth of the effort.

Sure, it’s much harder to watch somebody we love get speared by a hook while we’re trying to show them how to fish and have three times more of the clean up because they smeared the scales and blood all over between the tears and hysteria, than it is to just catch the fish, if you know what you’re doing, and share the proceeds.

That first option is harder for good reason, of course. It will ultimately have the bigger payoff.

Let’s think about that as we take a look at the People First option

Categories :
Disability in Focus