CEO blog: Why am I so in love with Capes for Kids?

 

Kathleen Wynne Capes
(Left to right) Emily; Premier Kathleen Wynne, MPP (Don Valley West); Liam; me and Imaani. Together we showed our support for Capes for Kids during the Premier’s visit to the hospital last month.

Almost three years ago when I interviewed for the job of President and CEO of Holland Bloorview, I told the search committee that I didn’t want Holland Bloorview to be the best children’s hospital hardly anyone has heard of any more. It’s a phrase I’ve used a lot since, especially with the great Joint Communications Team that the Hospital and Foundation share and with my great partner-in-crime Sandra Hawken, President and CEO of the Holland Bloorview Foundation.

This year, Holland Bloorview launched Capes for Kids. From March 6-12 all sorts of people (and more than a few pets!) will be wearing capes to spread awareness of and raise funds for childhood disability. Participants will also be talking about the great work that Holland Bloorview does providing exceptional care, taking on groundbreaking research and discovery, and training the clinicians of tomorrow all in partnership with the world’s experts – the children and their families.

What is so exciting is how people have embraced the Capes for Kids concept. Because it was co-designed with families of Holland Bloorview clients, we were confident kids and parents would love it, but we’ve been wowed by how it has spread. More than 86 teams registered, more than $230,000 raised and counting, and over 1000 brand new donors, many of whom now know more about the needs of kids with disabilities than they did before! And more important than anything else is how meaningful participants are finding it. Check out this video to see what I mean.

I’ll be proud to be wearing my cape from March 6-12 as will so many of the Holland Bloorview team, kids, families, friends and supporters. And we’ll all be taking the opportunity to talk about the 7400 amazing kids we serve each year and kids like them around the province, country, and the globe. Together we can make sure they will have the healthiest and most meaningful futures and live in a world of possibilities!

 

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Julia
@Hanigsberg

Bright Futures: Bridging the Gap to Adulthood

By the time I turned 18, I’d been babysitting for years, I’d worked in retail as a cashier at Sam the Record Man, and I’d been a waitress serving appetizers at a bar attached to the Keg restaurant (anybody remember Brandy’s?). I had a wide group of friends in school and at these part time jobs. All of these experiences were unspectacular. These were all the typical jobs young people could be expected to apply for and get. I used my savings to travel for six months in Europe before starting university – also a very not unusual thing to do. I didn’t get the opportunity for these work, travel and educational experiences because I was exceptional. In fact, I was pretty darn average.

Fast forward a few decades (I won’t get into how many!) and two years ago when I became CEO at Holland Bloorview one of the first meetings I had was with David Coriat, the father of a former client and current volunteer, and a generous supporter of Holland Bloorview. David and I talked about a number of things, and for anyone who knows him, it wasn’t surprising that his greatest passion was reserved for talking about his daughter Jessica and how the path to adulthood for a young woman shouldn’t be so hard. With everything Jess has to give … shouldn’t it be easier?

I will never forget that conversation… and so many others I’ve had with parents of young people and many of our former clients. The words they often use to describe impending adulthood are surprisingly consistent: “the abyss” or “the cliff.” Why?

Research, including that of scientists like Dr. Sally Lindsay and her collaborators out of the Bloorview Research Institute TRAIL Lab, tells us the same thing: youth with disabilities continue to experience poorer outcomes in post-secondary education attendance, employment and independent living than their typically developing counterparts. Transition from paediatric health care to the adult health care world is also difficult and uneven.

  • One survey found 53% of children with a disability have zero or only one close friend
  • 59% of Canadian youth with disabilities, aged 18-21, attend post-secondary education compared to 72% of youth without a disability
  • Unemployment rates for youth and young adults with disabilities are high and more than half of those who finish school do not have a job

That’s why there is an urgent need for Holland Bloorview to step up and impact transitions across all moments of the lives of children with disabilities. These transitions start early and smoother early planning, for example, for transitions to school in the community, between elementary to high school, from hospital to home and community, set up children with the critical skills and experiences they need for their best possible life. Our job is to set young people up for brighter futures.

And it is important to emphasize that there are as many optimal futures as there are children. While sometimes people hold up “independence” as the best case, we know that for many of the children we serve at Holland Bloorview that isn’t possible or desirable. Developing a truly inclusive strategy means respecting the dreams and goals of every family in all its individual particularity: there are many wonderful lives composed of different experiences and we want to provide the tools and environment to support any of them.

Holland Bloorview’s Transitions Strategy will improve youth preparedness and planning, reduce barriers, change attitudes and close gaps so that youth with disabilities can access more opportunities with greater confidence.

How will we do this?

  • We will identify and challenge barriers to full participation and inclusion by breaking down stigma around disability
  • We will ensure that all Holland Bloorview staff have the training and resources to coach children, youth and families in planning for the future, so that every single Holland Bloorview client has a transition plan in place
  • We will expand and scale Holland Bloorview’s programs and services such as employment readiness, life skills, youth leadership and family support, based on real needs of families and supported by research
  • We will develop a ‘young adults’ bridging program to address the unique needs of 16-26 year olds
  • Partnering with leading adult service providers we will identify gaps and build joint strategies, including funding strategies, to meet the needs of kids with disabilities as they age out of children’s services
  • We will develop and scale a model to take the programs we know families value the most within our four walls and offer them through community partners so they can benefit individuals of all ages near and far
  • We will continue to conduct ground-breaking research to reduce barriers to employment, and create pathways to the future for our clients and kids like them around the globe

And stay tuned because there will be much more!

The young people we work with inspire us and we are excited and delighted to be doing this work that will be impactful to so many children, youth and families and will create a brighter today and a brighter tomorrow.

I started by telling you about the opportunities I got as a young person. I didn’t get them because I was special. I got them because I was average. Every young person has a right to the opportunities appropriate to them to enrich their future. At Holland Bloorview, supported by the Coriat family and their wonderful friends, we are going to make strides to make it so.

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Julia
@Hanigsberg

Hope and Solidarity

On June 14, 2016 I published a special mid-month post to my CEO blog. Holland Bloorview Kids Rehabilitation Hospital’s June 13 Leadership Forum was on the topic of equity, diversity and inclusion. This had been planned months before, but the discussion couldn’t have felt timelier having followed less than 48 hours after tragic gun violence at a gay night club in Orlando, Florida.

Today is another day to address violence in the world. Today we stand in solidarity with our Muslim brothers and sisters and especially with the family and friends of the victims of the tragic and deadly act of terrorism at a Quebec mosque Sunday night.

I don’t have any better words, than the ones I used last June. In talking to our leaders and subsequently on my blog I said:

I don’t know who first shared with me the idea that we all carry around our individual (metaphorical) backpack. It might have been Holland Bloorview’s Louise Kinross or something I read in her wonderful BLOOM Blog or maybe I picked it up somewhere else. In our backpack we carry with us our experiences, our perspectives, our life choices, our culture and tradition, even whether getting the kids off to school this morning was smooth or WWIII! And as it is an invisible backpack, we can’t ever know what’s in the one that another person carries. But we know they carry it, and it affects who they are, what they say, how they react.

Now, because of the act of hate and violence that happened in our own country there will be clients, caregivers, family members, volunteers and staff who today feel less safe than they did 48 hours ago. Their backpacks will be heavier today, and in the days and weeks to come.

Equity, diversity and inclusion is important every day, especially for an organization whose purpose is serving children who face being marginalized in so many aspects of their lives. We are probably among the world’s experts on strength and resilience…taught by our clients and families. And we pride ourselves on being leaders in compassionate care.

Embracing hope and solidarity even, and perhaps especially, in dark times, we must build a better, more inclusive, more just world for our children and all children. Inshallah.

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Julia
@Hanigsberg

CEO blog: Interview with accessibility advocate Ayesha Zubair

In this blog and part of my Q&A series, I’m interviewing Ayesha Zubair. Ayesha has been part of Holland Bloorview since 2001 – as a client, employee and now as a volunteer. She is currently an Enterprise Recruitment Research Specialist at RBC, where she leads business segment projects and HR recruitment initiatives. She is also part of the hospital’s Youth Advisory Council and recently participated in the National Youth Forum to help inform the development of Canada-wide accessibility legislation.

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Ayesha Zubair

Ayesha completed her Bachelors of Human Resource Management (BHRM) at York University in 2013. She currently serves on the Accessibility Advisory Committee and Customer Experience Advisory Committee for Metrolinx and acts as a Board member for the Centre for Independent Living in Toronto (CILT).

  1. What are you reading lately? What’s on your nightstand (or kindle!)?

I could go on and on about books! Reading is my absolute favourite thing to do. I’m finishing up “Sapiens: A Brief History of Humankind” by Yuval Noah Harari – it is a fascinating perspective on our world and our society.

  1. Do you use any social media? Why or why not?

Absolutely! I’m on Facebook, Twitter, Snapchat, LinkedIn…you name it!

I used to be a youth facilitator for the ‘Computer for Kids’ project at Holland Bloorview and worked with clients and families on the inpatient units. My job was to help clients get set-up with computer access but also to work with clients to coach on the safe use of social media. I can’t help but see the power of social media in alleviating isolation especially for youth who are hospitalized. Generally speaking, social media plays a critical role in accessibility. It’s especially important for people with communication disabilities.

  1. Who have been your biggest influences?

Honestly, my family has been so great – I know everyone says that but I really couldn’t do it without them. Since my diagnosis at age 12, they never let me miss a beat. We had just immigrated to Canada and we didn’t know anything about disability – we never had to think about it. I guess what I appreciate the most about them is they didn’t treat me differently or let anyone treat me differently even though everything in our society and culture tells them otherwise.

Another great influencer was Dolly – a youth facilitator at Holland Bloorview. I didn’t always know Dolly in the early days of being at the hospital but she’s been an incredible mentor. She helped me figure out what my strengths were by providing me with opportunities to…try. That’s been the greatest gift anyone could have given me. It helped me figure it out and gain confidence along the way.

  1. What do you think your best quality is?

That’s such a tough question! Hindsight is 20/20 but I’d like to think that I am resilient. I stumble sometimes but I always manage to get back up somehow.

  1. What’s your main fault?

Quite frankly, I have many. I used to second guess myself a lot and I used to use filler words like ‘just’ and ‘I think’ but I received incredible coaching from my manager to help me communicate my ideas clearly and concisely.

Right now, I’m working on relentlessly prioritizing for impact. I have a million ideas a minute and I can’t be any other way. That’s who I am, I am curious and I like the big picture. That’s all good but what I need to be able to do is to relentlessly prioritize my ‘million ideas’ and act on the most impactful ones as priorities change. I used to think that prioritization was an occasional task – what I’m fast realizing now is that it needs to be constant, especially in our constantly changing world. I’m working on it and getting better but it’s a work-in-progress.

  1. What is your most treasured possession?

Oddly, my name. In my culture, names are ‘given’ and their meanings are carefully considered as they’re thought to have an impact on the child they’re given to. My name means “a prosperous life” in Arabic. To me, it is a present from my grandfather.

  1. What do you consider your greatest achievement?

To me, an ‘achievement’ is anything that I’m proud of; something that helps me hold my head up just a little bit higher. For me, my involvement with Holland Bloorview, in its various ways, is a personal source of pride and achievement. To me, we are disruptors. We continually change the way people see disability – how could I not be proud to be a part of that?

  1. Looking back, do you have one memory that stands out of your time as a client at Holland Bloorview? Is there one thing you know now you wish you’d known then?

I do wish that I had the opportunity to meet with a mentor earlier so I could have had a role model and known that I was also allowed to aim as high as I wanted, even with a disability. There are a lot of messages out there that tell you otherwise.

The one thing I’ve learned is that especially as a person with a disability, you are the teacher – for your family, your friends and your colleagues. Everyone looks to you to help them understand what you might, or might not, need and that’s not a bad thing.

  1. How did you end up working where you do? Can you tell me a bit about your job?

I work at RBC as an Enterprise Recruitment Research Specialist. I lead business segment projects and HR recruitment initiatives. My focus is on providing market intelligence and enabling data driven decision making across the organization.

I started my career in 2012 through an internship but I got my current position through happenstance! I had organized an event where I met an RBC recruiter who asked me to just come in to meet with my now-manager for a casual conversation and before I knew it, I was hired! Since then, I’ve received my second promotion and I’m looking forward to my new adventure as a Recruitment Research Specialist!

  1. I understand you have been active on the National Youth Forum. Can you tell us what that is and what you’ve been doing?

Yes, the National Youth Forum was an opportunity for youth across Canada to come together and advise on the most pressing issues about accessibility in Canada.

As a Youth Representative, I was invited to go to Ottawa in November 2016 along with other National Youth Representatives and we spoke about working together to bridge gaps in regional disparities. There were delegates who just wanted reliable internet! That really made me aware of my privilege as an inhabitant of Canada’s largest city because I know that technology is so critical for inclusion of people with disabilities.

  1. The federal government is exploring new accessibility legislation. Can you tell us what you think would be most important for this legislation to achieve? How are you making your views known?

For me, it comes down to three main issues:

  • Addressing policy barriers: A lot of our policies don’t really “talk to each other” and unintentionally end up creating barriers that are sometimes insurmountable.
  • Employment: I’ve seen the barriers people with disabilities can face when it comes to employment (and not just what I’ve faced but what others do too) and I will do everything I can to breakdown some of those barriers.
  • Effective measurement and implementation: It’s great that we’re doing this but is it realistic? Measurable? Will it serve us well in the years to come? Is it bold enough?

I’ve written a blog post and I continue to keep the discussion moving forward by keeping this top of mind in all my conversations, across all the organizations I am a part of.

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Julia
@Hanigsberg

CEO Blog: The Hard Work of Client and Family Centred Care

Last month Holland Bloorview hosted providers and caregivers from across Ontario for a working day on building better health care experiences (catch some key moments on Twitter by looking for #PACE2016 and on our website). Speakers included National Health Service (UK) leader Helen Bevan and Health Quality Ontario CEO Joshua Tepper. Here are 4 of my takeaways.

  1. The work of enhancing health care experience isn’t about “provider bad patient good”
  2. Making change doesn’t need to be about big top down initiatives
  3. We all have much to learn from each other
  4. Day to day moment to moment care experiences are the most meaningful places to enhance patient AND provider experiences
  1. The work of enhancing health care experience isn’t about “provider bad patient good”
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Word bubble from the interactive window display build

As we evolve our work in client and family centred care, patient engagement, patient experience and other framings of how to put patients and carers in the centre of health care, we need to emphasize that providers (doctors, nurses, therapists) are not the “bad guys.” No one walks into work at a hospital wanting to do anything but the best for his or her patients. Patient and provider experience can both be enhanced – this doesn’t need to be zero-sum game.

  1. Making change doesn’t need to be about big top down initiatives

The most impactful change can be small, at the margins, not achieved by asking permission. Everyone within a hospital can be an agent of change one moment, interaction, patient, decision at a time. And those changes can spread organically and meaningfully.

  1. We all have much to learn from each other
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PACE Forum participants learning from each other during Quick Hits presentations

No one institution or organization has a monopoly on what makes care patient centred or what constitutes the optimal patient experience. Learning organizations need to be humble in order to benefit from the experience of others. Within organizations individuals learn from each other best when teams are diverse, everyone shares ownership, avoids finger pointing and commits to empathy and mutual respect.

  1. Day to day moment to moment care experiences are the most meaningful places to enhance patient AND provider experiences

The art of patient centred care doesn’t happen in boardrooms or conference centres. It happens in the clinic room, at the point of referral, at the bedside. It is enabled in problem-solving discussions amongst team members and between managers and front-line professionals, in collaborative practice meetings, not to mention in hallways, at desks and in break rooms.

 

Client and family centred care isn’t just work, it is hard work. It is important work and work we are going to do together because the only thing that matters is best care and the best care is care co-created together.

CEO Blog: Guest blogger Laura shares the importance of seeing all of her son, Wesley, and not just his special needs

img_4914My son Wesley is a five-year-old boy who loves sports, telling jokes and playing with his classmates. He wants to drive a bus when he grows up, he’d like new red shoes to match his glasses and dreams of having his very own ball pit, in our living room. Wesley is much like any other kindergarten student – bold, bright and sometimes unexpected – but you have to look past stereotypes to really see what he can do.

You see, Wesley has a lot of experience with the services at Holland Bloorview Kids Rehabilitation Hospital. He first came to the hospital as a toddler, after intensive cancer therapy for a brain tumour. During his treatments he suffered a devastating stroke and when we first arrived, he was unable to move his left side. He couldn’t swallow, hold his head up, or even cry.

At a glance, the boy you see now wears hearing aids, glasses, and splints on both legs and an arm. His left side is weak and he loses his balance easily. Wesley speaks only a few sounds and needs a walker or wheelchair to move about. “That poor little boy,” people sometimes say at first. But if you knew him, you wouldn’t be heard uttering that phrase. Accomplished, witty, charming and active are some of the words that best describe Wesley.

I like to believe that people are inherently good. I know some parents and special needs kids have had to deal with outright negativity and ignorance and that makes me sad. Thankfully, for us, it seems to be that people are just a bit unsure around a child who looks different or whose life they don’t understand. I try to give everyone the benefit of the doubt and Wesley is usually capable of proving me right. People want to get to know him and interact with him, they just don’t know how to, at first.

My favourite qualities in my son are his sense of pride and independence and his sense of humour. You might think a child who can’t really talk and needs so many assistive devices to get around couldn’t be funny or strongly independent, but kids like Wesley are rarely what the stereotypes might have you believe.

With signs and pictures, Wesley has been telling jokes since before he could make any sounds. He loves puns and rhyming words. He’ll say “Frogs eat fries!”, instead of “flies” and has talked about our trip to “Ha-why?-e” . He says he will go to a friend’s “birthday potty”, then breaks down in fits of giggles when we finally figure out the joke.

He’s very bright and will try patiently, and creatively, to make himself understood.  The first time this happened he was very young and didn’t have a way to say “other” or “chocolate”.  I was blown away when I realized that “I no want drink this milk. I want…cake milk” was his way of telling me he’d prefer chocolate milk!

His teachers and therapists can tell you he is fiercely independent. It probably isn’t the first thing you’d think when you see a child being lifted from his car seat into a wheelchair, or wheeled onto a pool deck and lowered into the water. Wesley will accept only the smallest amount of help necessary and if there is a way he can figure out to do something on his own, he will. He refuses to pedal his bike until we let go of the handlebars and we had to install a baby gate to stop him from sneaking to climb the stairs on his own.

Wesley was determined to participate in a triathlon after watching his cousins from the sidelines. You can tell he loves the independence of moving in the water and on his bike. This past summer, with a lifejacket, an adapted tricycle, his walker and his father carrying him between transitions, he completed his first triathlon! People from Holland Bloorview, family and friends, even strangers and race organizers, followed Wesley along the course to cheer him on. I will never forget how proud he looked – beaming – as he crossed the finish line to receive his medal. More than a few adults stopped us that day to say what an inspiration Wesley was to them. My heart was so full.

I think the way we communicate with Wesley happens to help when he’s meeting new people. He will sign and make attempts at saying words, and we repeat each word as he is going. Hearing the words repeated seems to help his speech flow, and it helps us both to confirm that we are understanding what he’s trying to say.

When we are out and about, at a restaurant or in a checkout line, people will overhear us talking with Wesley. I don’t feel like they are staring, but I do get the sense that they are intrigued by what is going on. Wesley has the usual 5-year old conversations that any kid has with their parents.

Wesley: “I want to eat French fries for lunch.”
Me: “Wesley, you can’t have French fries every day. We are going to eat lunch at home today.”
Wesley: “Oh…..ok…But TOMORROW, I want to eat French fries for lunch.”

I can see people inevitably smile at Wesley when I look up and catch their eye.  I smile back, both because I am a mom who is proud of her son and because I know that Wesley has just created a small bond with a new person. I can see people are surprised that he is able to communicate with us and even more surprised to discover that this kid, who looks and sounds different, is talking about the same things that any other kindergartener has on their mind. I can tell when the switch clicks on and people realize there is a bright and funny young mind trapped behind Wesley’s garbled baby-talk and awkward signs.

After spending a little time getting to know him, Wesley’s personality and abilities shine through and there’s no way anyone would think of him as a “poor little boy” anymore.  Once people catch a sparkle of what lies underneath, they stop seeing him as just a product of his limitations and adaptive equipment. They begin to see the impressive kid he really is…the kid who loves to tell jokes and race triathlons.

All mothers and fathers think their children are pretty amazing, and special needs parents are no different. We love our kids and are proud of who they are and their accomplishments. Like all parents, we help our kids deal with challenges they face, we enjoy their personalities and celebrate their strengths.

Wesley manages to win over complete strangers before we’ve paid for our groceries, but for every Wesley out there, there are kids with different challenges who may not be able to make those connections as quickly. They may not be able to flash a cheeky grin. They may not be able to make eye contact or control their hands to give a high-five and wave hello. Some kids look even more different than Wesley does…but I guarantee you, there is a whole amazing and unique little person inside every disabled kid you see…just ask them!


You can learn more and help support essential programs for Wesley and other kids like him, such as respite care, family support, music therapy and camp.

CEO Blog: The Care Kids Deserve Today and Tomorrow

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No matter how long you’ve been out of school (and for me it’s 25 years since my law school graduation) September feels like the real New Year and where did September go? As we start October there is a dizzying array of things happening both within the walls of Holland Bloorview and outside.

As I talk to colleagues across Canada, understanding how to deliver care in a more seamless, coordinated way is always top of mind. Every region has been reviewing the way it organizes healthcare and associated services and that trend shows no sign of slowing down. Closest to home this is reflected in Ontario’s Patient’s First policy.

And it’s not just across Canada: these are the same questions being asked globally and align to the questions and strategies of the World Health Organization (WHO) in its WHO Global Strategy on Integrated People-Centred Health Services 2016-2026.

I hear versions of exactly the same thing in the hallways of Holland Bloorview. The #1 thing I hear from families is that we need to make it easier to manage the multiple services, providers and institutions their children interact with from specialists to schools, to emergency departments, primary care physicians and community paediatricians. Families understand that Holland Bloorview can’t possibly offer every service but can’t we partner more effectively to make meeting the child’s needs more seamless?

And as a team totally committed to client- and family-centered care, we are asking ourselves similar questions:

  • How can barriers to providing the best care be removed?
  • How can we make admissions and discharges safer, more efficient and easier?
  • Is there a way we can access the resources our clients need most when they need them (mental health is an example)?
  • Why is the transition to adult services so difficult for clients and families? How can we improve it?

These are the right questions to be asking and over the next six months I hope we will be asking ourselves lots of hard (even scary!) questions as we chart out our next strategic plan. As we close out the final year of Leadership in Childhood Disability 2012-2017 we have the opportunity to carve out our priorities for the next stage of our future. Now is the right time to pause and reflect on the impact we have already had in creating better care and a more inclusive world for our clients and families, and to create a bold and aspirational strategy for our future.

How will we do this? By asking big questions. Led by the board of trustees, everyone who works at Holland Bloorview, along with clients, former clients, families, volunteers, donors, partners along continuum of care in healthcare, children’s rehabilitation, adult services and other sectors of impact to our work with children and families, will have a chance to contribute their insights and experience to help inform the questions. We will then be diving deeper into the themes that emerge. By spring we will be finalizing our goals and objectives.

As we do so, we will continue to ask very pointed questions about coordinated and thoughtful care and take action to resolve them. As an example: building on discussions that have been taking place over the past two years about building better networks of paediatric care, I’ve joined with the CEOs of Sick Kids and the Children’s Hospital of Eastern Ontario/Ottawa Children’s Treatment Centre (CHEO) to talk about how our three organizations might work together to achieve a vision of a more coordinated, consistent, high-quality system of care for children and their families especially those children with complex medical needs and disability (while maintaining our independence and local accountability to our boards of trustees).

And, thinking beyond these three institutions, how might other hospitals and service providers including rehabilitation, community paediatrics and mental health be involved? How can we all build on our own unique identities and strengths to contribute to the bigger picture of coordinated best quality care for kids?

Big, scary questions indeed.

Over the next six months we will be pushing hard to ask these types of questions to help us develop our plan for the future ahead.  My hope is that the questions we ask will turn heads, drop jaws and challenge the status quo.  If not, we probably aren’t pushing ourselves hard enough.