How good intentions can cause harm

Person-Centered Thinking (PCT), is a professional disposition that is supposed to ensure that people with intellectual disabilities (or seniors, health patients, etc.) are meaningfully involved in their day-to-day activities and experiences. Person-Centered Planning (PCP) is more of a formal planning process in which people articulate their longer term goals, dreams and visions for their life, and where a year’s worth of activities and responsibilities are identified that will move things forward. Basically. There are probably hundreds of variations and inflections.

The praxis is supposed to suspend the needs and interests of programs, organizations and systems in order to put the individual at the center of consideration. It means paying attention to someone’s capacities, interests, needs and particularity in order to derive goals and activities that will advance their quality of life. It’s about establishing coherence between what a person wants to do and what they are doing/how we support them.

As such, PCP/PCT is not only about reclaiming or safeguarding one’s personal demesne from institutional encroachment (i.e. their tendency to manage the settings, activities, goals and choices normally belonging to free individuals), it’s also about mobilizing those institutional structures and resources to advance individual goals.

Historically, “person-centered” goals and activities have focused on health and behavioural objectives, skill learning (e.g. cooking, financial literacy, etc.), menu options, and a list of recreational activities available within programs. It was more often about what the system provides or feels obliged to provide, and less about what someone might personally want or need (even if they can’t articulate it).

Anyone involved in teaching or overseeing person-centered training or plans will know that PCP/PCT is a hard thing for the sector to actually put into practice. Year after year, person-centered plans continue to express either institutional interests, such as weight loss and skills acquisition, economic goals such as money, jobs or volunteering, or recurring personal interests, such as swimming and bowling. The everyday application of person-centered thinking still ends up with people “choosing” repetitive experiences involving malls, parks, television and cafes. Good and full lives remain elusive.

And no matter how many new tools and resources we come up with, or how much training we do, not much seems to really change. It’s not too difficult to identify some of the more obvious structural impediments to PCT/PCP, such as:

• epistemological assumptions around capacity and potential, who has it and who doesn’t
• axiological assumptions around what makes a legitimate actor as well as what values ought to prevail (e.g. safety and equality)
• system engineering that strives for consistency, predictability, and universality 
• economic and resource limitations

But the structural impediments that I want to talk about are much more imperceptible as they have to do with gaps in the very architecture of possibility. I believe the main reason why PCT/PCP fails is because it requires certain existential pillars or preconditions to be met, and those preconditions simply don’t exist.

The poverty of experience is insidious because it is largely invisible and overlooked, and because it has everything to do with what is possible for a self. The fewer experiences one has, the less able one is able to imagine different futures for oneself, the less one is able to find inspiration and motivation, the fewer opportunities to undergo growth and development, the less exposure to things that might ignite imagination and purpose.

Experience is an essential condition for becoming who we are. Without experience, we become shadows of who we could be. If we ask people with limited experience to choose what they want, it’s no surprise that they will choose what they know, and what they know is usually incredibly limited and limiting. If we are content with that answer, we consign them to an endless repetition of empty and uninspiring experiences. We will be responsible for the disintegration of their possibilities, rather than their expansion. And we will do so with the best of intentions, contented with a false sense of moral rectitude (“that’s what they said they wanted!”).

Not only do we impair their growth and fulfillment, we force them into adaptations needed to endure repetition, routine and emptiness. They may become aggressive, depressed, and/or socially anxious. They may become more dependent on services or medications, and more unsure of themselves.

It’s simply not good enough to say: “they chose this goal or activity; they chose to do the same thing again.” They don’t know what else life has to offer, and it’s our duty to show them. Where it makes sense to do so, we need to figure out how to challenge, nudge, cajole or beg people to try something new. That will require lots of creativity and coaching. It will require us to think about how we plan or sequence experiences so that they are successful and interesting, and so that they will spark people’s confidence and curiosity. We’ll need to figure out how to explain what we are trying to do and show that we have faith in them. And help them to cope with experiences that don’t go well.

If we do not spend time with people to first develop/understand their sense of self and purpose, their beliefs and their values, then what sense can be made of “choosing”? How can it be anything but surface-skimming? Of echoing or deferring to others rather than finding one’s own voice and speaking it? 

Too often, person-centred thinking runs on the hollow premise of preferences and likes, on what people enjoy or what they are good at, on what they think is desirable, and that is the end of it. But were that the premise for decision in our own lives, it would make us hedonistic and shallow. It would be squandering our brief lives. 

Yes, we want people to be happy, but in a deep way.

The basis of choice is not simply about what feels good, what brings us pleasure, or what plays to our strengths. It’s not always about what makes us smile or laugh. It’s about who we are and who we want to become, and that isn’t a peachy journey. It will involve choosing things we don’t enjoy doing; sometimes entering compromise and/or conflict; exposing ourselves to pain and hurt and disappointment; reaching and failing; accepting loss and limitations as well as harvesting new possibilities. Along just such a path we discover the depths of hope and joy. We become immersed in the project of being, in personal and collective growth, in meaning. And the growing swirl of possibilities. We find ourselves, create ourselves. And lose ourselves again. It’s a heady thing.

Having a life that matters requires that we often resist the seduction of fancy in order to cultivate substance. This is not to say that we don’t have our pleasures and escapes, but they are contextualized within a larger frame of pursuing a good life. In the absence of such a frame we become anchorless and lost, buffeted by a dizzying series of emotions, needs and drives. We forget what agency really means—the ability to shape a future for ourselves that has meaning and a purpose.

Do we invite people with intellectual disabilities to partake of such a road? Do we enter into the muck of existential angst and becoming with them? Do we help them to build the masonry of character, conviction, and purpose from which the self achieves true presence and power? At least, to the extent that people can walk along this road? If person-centred planning and thinking is not anchored in a deeper awareness and development of self, it is complicit in enfeebling it.

The absence of the right foundations—experience and self-exploration/ identity — dramatically changes the role and effect of person-centered planning/thinking. Instead of being a tool of expansion, it becomes one of limitations; instead of empowering those we support, it confines them to endless cycles of empty pursuits.

Our first duty is to ensure that people have exposure to a broad and robust range of experiences. This means nudging them outside of their comfort zones and challenging them to go places they haven’t gone, interact with people they don’t know, and try things they haven’t tried. Our second duty is to spend time with them to understand and advance their sense of self and identity, to the extent that we are able to do so.

These essential conditions must be present before person-centered “anything” can take place. Only then will PCT/PCP be able to support people to be at the center of their lives and to live a life of purpose.

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