“If ‘being loved’ is the most important thing in our lives, then the most important thing is something we cannot do by ourselves or on our own…we can only receive as a gift.”
– H.S. Reinders
If you want to know, today in 2014, true social inclusion hardly exists. If it did, no one would have to point it out to you, or show it in their outcomes, or write it in their mission statement. Small pockets of it do exist. Our friends in Georgia could tell you stories, and in California, Ontario, British Columbia, and even at Starfire we’re making some breakthroughs, but in reality all of us are struggling with getting it right. The fact is social inclusion requires a tremendous paradigm shift, one that must be fueled by a dedicated leadership. When it happens, you’ll be able to see at your grocery store, your neighborhood, your workplace. It will be undeniable.
Even just beginning the groundwork for social inclusion has many stopped in their tracks. Think of how many friends you have with disabilities. Or how many of your friends have friends with disabilities. It’s hard work, often as ambiguous and mind wrenching as a blind date. Try unraveling the intricacies that come with social inclusion, all in a days work sometime. It’s not simple stuff. It takes guts. Without leaders lighting a path for what is to be, most people try, and end up sticking with the status quo. That’s why at Starfire we rely so heavily on our leaders in this
work. People like Jo Krippenstapel, John O’Brien, Tom Kohler, Heather Simmons, John McKnight, Connie Lyle O’Brien, Jack Pealer, Beth Mount, Judith Snow, Jack Pearpoint, and Linda Kahn, (the list goes on). It’s why I look up to my own torch bearer, Tim Vogt. These guys are modern day badasses, stopping at no county waiver cost to advocate that “a good life” is filled with friendship and love, and it’s what people with disabilities deserve.
We all have our own moments we look back on and sort of cringe, “what was I thinking?” and then we feel a wash of gratitude for the leader who helped guide the way we eventually acted. Long-time social inclusion leader, Angela Amado, tells a story about the time she told (basically the grandfather of social inclusion) Wolf Wolfensberger, that she wanted to be the director of an institution for the mentally retarded after college. It was this moment in time for her, when this leader started a new conversation about her career goals, that her course in life shifted toward moving people out of institutions, and into community life.
But the truth is, there simply aren’t enough leaders asking the tough questions and mentoring the young go-getters. So it makes sense that status quo is so rampant. Day programs are “working” just fine, people “like” getting a paycheck from their jobs at sheltered workshops,* and “they will have no where else to go” if we try and fail at designing better services. As a responsible leader who serves some of the most vulnerable people in our society, I cannot imagine the type of will and fortitude it would take to stuff away such fears and doubts, and forge ahead toward the unknown. *(Labor law exemptions for employers of people with disabilities have created jobs that pay as little as 10% of the minimum wage…) There are also those who say in their own defense, “we are doing social inclusion,” referring to activities like outings where a group of people with disabilities go out to a restaurant or movie together. We have trouble taking things a step further, and seeing the damaging effects that congregating people with disabilities in this way can have. Rarely are people asking, “How can we build this into a richer vision of social inclusion, one that involves loving, respectful relationships in the community?”
And while words like “choice,” “self determination,” “rights,” and “person-centered planning” are par for the course at many disability organizations, to put it fairly: these terms are widely misused. Typical organizations lean toward a system-centered, bureaucratic approach, which means these words have come to represent mere cogs in the wheel of cost-driven processes. A person can choose to sit in front of the TV in the basement every weekend, and staff can argue that they are defenders of their choice – even if it results in no community friendships, no visible contribution, no real sense of social belonging. Perhaps staff feel they are not trained on duties of building a person’s social network, or see it as the responsibility of the higher-ups. And building relationships for ourselves, let alone others, can border on terrifying. It takes a pretty thick skin. So, instead of tackling the task head-on, we “come to use rights and choice to plug the hole that the lack of friendship has left behind,” (H.S. Reinders). This substitute for a good life is not going to stand.
Then there are staff who feel the opposite and try their best to carve out a good life for the people they serve, even without supportive leadership. Often, these staff come to be known as the “troublemakers.” Their viewpoints make them outcasts, they are seen as nags and instigators, rather than as the thoughtful, dedicated workers they are. This type of dissatisfaction felt by staff who do not settle for less than a good life, as is evident in Allie’s post last week, should be grappled with openly as a sign of their fidelity to the work. We need to keep having conversations, practicing through trial and error, and struggling to bring things into focus if we ever are to succeed.
As you can imagine, it all takes a lot of patience. I’ve had my own moments asking, “Why can’t everyone just do their part?! It would make things a lot easier!! People’s lives are at stake here!!” One of our biggest hurdles might be that most people in mainstream society do not have any grasp or idea of what goes on in a person with a disability’s life. Tell the person sitting next to you on an airplane that you work with people with disabilities, and they will relate your work to the one disability service they’re familiar with, not knowing much about it besides maybe its location and perhaps outside appearance. They’ll say, “they do great work over there.” That’s because people generally think there’s good work being done at disability organizations. They readily feed into the co-opted stories of social inclusion all over the front page of newsletters and brochures, with glossy photos that smooth over the more common reality of isolation and segregation being experienced and reinforced in group homes, day programs, and sheltered workshops. Through these co-opted stories, the community is kept off-the-hook, led to believe that these organizations have people’s lives and well-being “under control,” and that those places are where people with disabilities “belong.” As well, organizations wind-up stagnating, and in keeping with their false narrative the true effects of their work go unexamined. Leaving people with disabilities, of course, to be the most negatively impacted of all as the consumers, yet often the least likely to organize together and demand better.
I’ll admit, maintaining this false narrative of inclusion in the disability world comes with its own merits. Generally speaking, people’s lives are probably better off going to a day program that professes to teach life skills, or art, or music, than sitting at home, alone. Everyone can feel better about that. But the reality is that these programs usually start off with a bang, “We’ll teach people to make art/music/eye contact, and the public will see they are just like everybody else!” and then will plateau into decades of the same ushering in and out of a segregated building without imagination and no ties to community life.* And as it goes, people at the top will applaud, parents will be grateful, and people will keep coming back, because they’ve found it’s the best thing out there that seems to “work.” (*Just last year I witnessed an elderly woman at a day program coloring in a cartoon toothbrush from a coloring book with other participants of various ages during a “Proper Teeth Brushing” seminar. When she smiled and held up the picture, I realized she had absolutely no teeth).
Harsh? Let me take it back a notch. These organizations are not “bad” and should not be blacklisted by society. I would be calling Starfire out if that’s what I was saying. I would be pointing the finger at myself. So many of us get caught up in the work deemed by society to be “good” at some point in our careers, and believe what we are doing is right. All I am trying to get across is that it’s complicated, and maybe more people should know that not every disability organization out there is saving lives, on the contrary. Many lives, many gifts and capacities, are being wasted. So community, you’re not off the hook. We need you to take responsibility too for the inclusion of our neighbors and family members. Most of all, we need more leadership in order to sift through this complicated story, veiled by many truths. Leaders who will help rediscover the true purpose in it all, to validate the reason we all got in this mess to begin with, and bravely start a social inclusion movement.
Which brings this thought full-circle. If Angela Amado never stepped into Wolf Wolfensberger’s office that day, and her career path was never challenged, she might have followed the track toward institutional work, never contributing to the effort of social inclusion. Without leaders who possess the courage, vision and willingness to question the status quo, people like myself, like Angela, and any number of us at Starfire will not be empowered. People with disabilities’ lives will not change. We will continue to isolate, segregate, and congregate people into programs with the best intentions. We will keep designing “new institutions,” as my co-worker Sarah would say. We will keep missing the point.
That’s why Angela will say that in her experience, the best staff come from organizations with leaders who are highly dedicated to this work. Watching our own leaders at Starfire, I’ve noticed a fine balance between maintaining an organization’s security, and innovating. You have to learn to be okay with lack of structure for a time. Accept a state of liminality, of constantly “letting go.” Free fall. Until the vision is realized. It requires a lot of support. But I have to think, if corporations expect and thrive on the fact that criticism is part of success, if their customer’s wants are as important to the design of a product as the bottom line, then why are we so afraid to adopt the same model in social service world? Any customer of Proctor & Gamble would ask as much. So when we hear time after time people with disabilities and their parents telling us that what their son or daughter wants most of all is friendship, why aren’t we bending over backward to make that happen? Maybe it’s because we think, well we can’t make people be friends with someone. Like any friendship situation, social inclusion makes us vulnerable to how other people choose to act. People we have no control over. But design thinking would ask us to frame it a new way: How might we set the stage for new friendships to start happening? And then begin the journey of discovery through trial and error and – free fall.
Sure, it’s not always easy. And it doesn’t come with the kind of perks that other innovative corporations might have. But it’s purpose-driven work. And we’ve got hope. And courage. And stories. Lots of ‘em. Stories of friendship and love and affinity that make a true paradigm-shift seem that much less impossible, “We cannot do any of the more abstract work, the paradigm-shifting work, if we drift away from the stories,” says Al Etmanski, a cofounder of PLAN. “It’s like cutting off our blood supply. It’s that clear to all of us.” (quote borrowed from this article). With these stories and leadership to drive the message forward, social inclusion can exist. “It’s going to be a ride and a half,” as Tim will say. I, for one, couldn’t be more grateful to be along for it.