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websites we love by people we’d love to spend time with – Sarah Robinson’s “Escaping Mediocrity”

June 1, 2011

I have been thinking a lot about the ways in which the idea of inclusion challenges us to not merely make things better for people with disabilities, but to create a better world which begins with aspiring to be one’s own better self, and then to be even more.   Models for authentic change are mostly found in the world of entrepreneurs and the arena of business seems to have become the location of much of contemporary philosophy and social ambition.   Sarah Robinson’s blog is a great example of this.

Stroll through and you’ll find entries by a spirited individual juggling motherhood, business, career, self, relationships and a general wonderment of how to better the world.   It’s easy to join her in this conversation by entering your email address at the top right and – ta-da – “escape mediocrity” with newsletters that are inspiring versions of her blog posts.   See if something like this resonates for you in terms of our supports for people with disabilities:

…I am certain that I am not alone in craving freedom from the death grip of mediocrity in this world. So, my BIG VISION is to build a tribe of like-minded adventurers who are ready to become extraordinary forces in their worlds. Does this mean we have to go to far off countries and slay giant dragons? It could, or it could just mean transforming our little corner of this world into something amazing.

I used it as my Facebook status for a day and a dozen people “liked” it and started a conversation about what we could do together that might be *amazing*.   My own “tribe of like-minded adventurers” accrues with such moves.  While thinking about this, I was talking to a friend with a disability who told me about getting a one to one support worker to support her around some challenges she was having, and then the support worker came in and wanted to do several things *for* her, made a bunch of assumptions about her, and didn’t have an interest or time or knowledge to do the one thing that she’d asked for.   It reminded me of a conversation with a group of self-advocate leaders last year, in which we began talking about how they were helpful in their communities, but by the end of the conversation were talking about how they were not helped by their one to one workers – one of them fired his supports one after another for insisting that they knew better than he what he needed (he wanted a job, they wanted his house to be clean – “my brother, who hasn’t got a disability, has an even messier apartment than I do and no one comes in and tells him to clean it”), another couple wanted support around dealing with professionals who “talk too fast, don’t remember our last meeting and don’t let us talk – we felt like we needed help” – and the support worker came in and started going through their cupboards and commenting on their food choices and wanted to take them to a big box store to buy in bulk (they wanted to shop in their neighbourhood where they knew people who, in turn, knew them and looked out for them).   “No one shops like that anymore,” said the support worker.   They started going out on the nights she was scheduled to come in, to avoid her.

I’m in a bit of a privileged position.   I’ve been those support workers.   I can remember taking someone swimming week after week because it was part of his health program, until he finally developed enough “swimming behaviours” that we had to stop, given that I wouldn’t listen to any of his other communication.  (Sorry.)   The behaviour that finally got him off the hook for swimming, after hitting himself, hitting me, throwing his swimsuit into the brambles, making “no, no, no” noises, spitting at the lifeguard and pretending to have gas, was that while we were in the changing rooms he started pointing at the penises of strangers and laughing hilariously.   Not the way to make friends in a locker room but certainly he escaped the mediocrity of my insistence that we had a schedule to follow that was more important than his wishes as a person.

I have also been the supervisor of those support workers, telling them what a good job they were doing, and saying to them things like, “I’m sure once they’ve gone enough times they’ll start to like it.”   And now, I am both a parent of children with disabilities and something of a leader in my field.

We exist, in our field, among influences that support such ideas.  It is horribly easy to set up a dynamic in which everything that is not working is the fault of those we support – they come out lacking, disabled, disowned, and one comes out of the meeting looking needed and professional.   To get away from such influences, we have to move quickly and go far and make some new friends.   See things that people are doing in other areas.   Read about best practices.   Go to workshops.   Use your leverage to suggest, implement, support and report on new, better ways of doing things.   As a great friend said to me, “In our field it’s enough to just be nice.”   My self-advocate friends don’t want to hurt the feelings of their support workers by confronting them; they don’t know how and they’ve been socialised to compliance.   By nice people like us.  Read John McKnight and you’ll find he’s a dedicated activist, he’s not concerned to be nice (he’s probably very nice as a person, but he’s very honest about the problems of how organizations and well-meaning professionals reduce the effective agency of individuals).   Sarah Robinson, likewise, has clearly made a choice to aspire to more: I am not alone in craving freedom from the death grip of mediocrity in this world. So, my BIG VISION is to build a tribe of like-minded adventurers who are ready to become extraordinary forces in their worlds.

Where to find like-minded individuals in our field?   Oddly, I’ve found more of them in the world of business and in families that include someone with a disability.   Few people in government have vision to share, or knowledge, and unfortunately one of the first places that funders (and agencies) make cuts is to training – so no new ideas there, no stopping to examine “good enough” and reach for the stars.  In a recent presentation I gave about support networks I decided to tell the story of a young fellow we know who has Down Syndrome, and how he’s figured out ways to succeed as an adult with more independence and more choices than anyone ever expected, supported by a network of family, friends and co-workers.   At the end of the presentation people said, “This was great – what a wonderful story – but the person I support doesn’t have Down Syndrome so it’s not really applicable.”   Hmmmm?  Really?  Is this complete lack of imagination good enough?

If we cannot imagine that someone we support, who does not have Down Syndrome, can be supported better by what we learn from someone with Down Syndrome, can we make the further leap to think that we can learn from entrepreneurs?   It’s the bug-a-boo of every presenter – this moment where the audience members who are looking for an out, find one.   “That works for your people, but my people are more challenging.”   “That’s fine for your folks, but my people have autism – it’s a special field.”  “That works for adults, but not children.”  “That works for non-union agencies, but not unionised workplaces.”   “That works for you because you’re an educator, but we don’t have degrees.”   Our favourite so far was “That works for you, but the people I support are multi-cultural and there’s no programs for them.”   These are all choices about vision.

We can reach further.   We can reach as far as we need to.   And we’re not really alone.   We may be alone in our towns, in our agencies, in our field, but luckily there are people like Sarah Robinson out there, coaching and thinking about how to be better and more and how to reach.   Here’s a sample from her blog:

Here’s the thing: most anyone you ask would agree that they absolutely, positively, without a doubt want to escape mediocrity. I mean, it’s a no-brainer, right? Who would say “No – I think I’ll settle for mediocre. That’s working for me.”?

And yet, that is exactly what many people do, day in and day out.

Why?

Because escaping the gravity pull of the mediocre is hard. Really hard. And, in general, human beings shy away from the really hard.

But, if you still want to raise your hand for this adventure, here’s the very first thing you must be willing to do:

Question Everything.

What do I mean by everything?

– Question the stories you tell yourself about what is and isn’t true.

– Question the ideas that you believe to be 100% accurate.

– Question the goals you’ve set and make sure they are yours and not someone else’s.

– Question everything you’ve learned and accepted as infallible.

– Question everyone who sets themselves up as a leader or a teacher.

– Question the business ideas that are believed to be “the gospel”.

– Question anyone and anything that ever makes you feel less than.

There are lots of other stuff to question, but this list should get you started.

You many chose to ask your questions privately – just you and you. You may choose to ask them out loud with a select group. Or you may choose to ask them on a big scale.

If you do chose to ask them out loud, be polite, never assume you are 100% correct and always leave room for different opinions. That is sort of the point of asking questions, right?

I want to prepare you for something, though. (No one prepared me for this, so I want to spare you the shock.)

If you chose to ask them out loud, some people will not be happy about the fact that you are questioning. Question-askers mess with the status quo and that makes many people uncomfortable. Especially if your questions a) make them start to question b) requires them to consider changing in any way.

We are creatures who enjoy comfort and predictability. We don’t want anyone spoiling that by rocking the boat. So if your questions involve other people, expect push back. Sometime hard push back.

If you are asking your questions out loud and they rattle cages, expect some people to suddenly go radio silent on you.  Like I said, those who ask questions can make some people uncomfortable.

The upside is that there will also be people who will encourage you to ask questions, support you as you seek out what is true, even walk along side you to make the  journey more fun.   Sarah Robinson – Question Everything.

The better our questions, and the more we ask them, the more likely that other question-askers will start to resonate with us and want to hang out and join us.   Our very questions create the environment that welcomes our dream of a “tribe of like-minded adventurers who are ready to become extraordinary forces.”   Oddly, as much as one might think this field is ripe for creativity and innovation, asking questions and getting answers that are different from the “regular” answers makes for some awkwardness and loneliness.

After 25 years in various roles I find myself believing very little that I haven’t actually seen for myself.   The ways we have developed to sucker ourselves and those around us (our “monitors,” who are also very nice people who don’t want to be offensive) are incredible.    I am sometimes asked to come in and assess what’s wrong with a team that won’t move forward and  is resistant to changes that will allow for lives that are more connected and included in their communities.   And often it hasn’t taken long before I’ve realised that the person holding everything back is the person who has asked me for the assessment.   Sometimes they know this, and they are looking for a way out of a corner that they’ve painted themselves into by endless litanies of rules posited as “policies” (hint in these situations: ask for the actual policy manual and compare it to what is being touted as policy – it might or might not be the same.   further hint: if they then say that everything is because of accreditation, look at the actual accreditation policies – because all over the place these are getting interpreted in ways that reduce possibility and confirm the status quo).   Sometimes they really don’t know what they are doing – it’s a field where the Peter Principle (you might have to wikipedia that if you’re under 35) has reigned since de-institutionalisation.   People who were good at their jobs supporting people, often in ways that are now outmoded, got promoted, and survived a bunch of changes, and now they’re entrenched in leadership roles and they might or might not be an actual leader.  And sometimes they absolutely know what they are doing and they believe, because we are all part of a system that is kind of delusional, that what they are doing is the right thing and that I will, naturally, agree.

But, really, I don’t agree.    I think we can do much better than supporting people in congregate care.  We can talk to people about their dreams better than we do, and listen better, and then respond in authentic ways.  I think we can support shared living families better.  We can support families better.   I don’t think anyone needs to go to a segregated day center to bowl with plastic bowling pins.   I think everyone can go to the prom.   I think schools could be way way way better at inclusion.   I think there are mental health and other professionals out there who might have a really great second opinion if we’re allowed to access them, instead of being supported to blame the person who didn’t get “better.”

We shoot ourselves in the foot by using with each other the kinds of techniques that have only worked to subjugate people with disabilities.    A lot of this happens with language.   We know the theory of the need for plain language for people with disabilities – it’s one of the first axioms they brought to the larger community as part of their civil rights movement: “nothing for us, without us” was going to require looking at our own jargon.   And yet we continue on course with each other with words like “innovation” – in a 2008 article by Bruce Nausbaum he declares the very idea of innovation as dead: killed off by overuse, misuse, narrowness, incrementalism and failure to evolve. It was done in by CEOs, consultants, marketeers, advertisers and business journalists who degraded and devalued the idea by conflating it with change, technology, design, globalization, trendiness, and anything “new.” It was done it by an obsession with measurement, metrics and math and a demand for predictability in an unpredictable world. The concept was also done in, strangely enough, by a male-dominated economic leadership that rejected the extraordinary progress in “uncertainty planning and strategy” being done at key schools of design that could have given new life to “innovation. I see all kinds of intelligence and hope in agencies around the province, but in many cases people are still trying to drag a dead horse to water, trying to “fix” a broken system that was never a reasonable response to disability.  But the question isn’t what to fix first and how, it’s how to be strong enough to rethink what it means to help individuals with disabilities organize the supports that will allow them to live interdependent lives in their neighbourhoods AND will allow them to aspire to participating in the kind of community leadership that democracy allows for.

A parent once said to me that she’d be glad if people stopped talking about aspiring to excellence and starting just demanding of themselves that they be adequate.   It was, for me, a sobering moment.   However, to escape mediocrity, we either need to be Van Gogh – a visionary with extraordinary talent, focus and an ability to give up all else – or need a tribe.   Finding a tribe is easier.   Make friends, keep your ears!   A story I’ve been telling people lately about networks of support is that I was at a meeting for someone who has a disability and the topic was his annual holiday; he’d been to Victoria before, he could go again, for three days in a hotel.  Check.  Tick it off.  Holiday planned.   Later I went to dinner with my own great friend and we were talking about summer plans – I said I wasn’t travelling far for several reasons, and we might go camping for a week; she told me about what her plans were and we started talking – there were a hundred ideas on the table – and by the time the night was through we were planning smaller holidays this year but setting up special bank accounts so that after saving for a couple of years we could take a cruise ship to Europe.   I went home thinking about the differences between the two conversations and how our tribes not only keep us safe, they insist that we aspire – that we be more than we are, that when we reach our goals we create new goals and build on successes.  Sarah Robinson might not be part of your tribe in real life (although she does consult and coach) but she can be part of our virtual tribe.   If you sign up you’ll find another secret to escaping mediocrity – she has clearly defined goals that she brings to each conversation: today it is Thoreau the other day it was Harry Potter.   Expand your tribe with someone who makes you reach.

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One Comment leave one →
  1. June 1, 2011 3:25 pm

    Wow. I’m honored that my writing has inspired you so. You are clearly on the adventure of a lifetime here. Well done. 🙂

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