CEO blog: CEO as advocate – creating a world of possibility

In my last blog I talked about why leadership matters. In that blog, I raised the importance of being an advocate and ambassador for the mission of the organization internally and externally. What does that mean in practice and what does that mean for me and for Holland Bloorview?

An advocate from within

On almost a monthly basis I get to be an internal ambassador for childhood disability as I introduce new employees to Holland Bloorview during their orientation to our mission, vision and values. I’ve never worked in an organization that has made its values so fundamentally a part of the new employee experience. By having the CEO begin the orientation day, the hospital signals that our values aren’t just something on a plaque or a website to pay lip service to. We expect everyone at Holland Bloorview, whether a scientist, social worker, administrative assistant, food service worker or physician to live the values every day through what they do.

Bringing visibility to disability

I also get to be an ambassador externally. Leadership is living the values of the organization and living its mission and vision. That means that every day and with every conversation, including with other health-care organizations, policy makers, donors and on social media, I am an advocate for childhood disability.

Our vision of a world of possibility is as bold as it is simple. It isn’t a call for possibilities for only the kids we see within the four walls of our hospital and satellite sites. It is a call to action on behalf of all kids with disabilities and it demands that we never be satisfied with today’s care, state of knowledge and training at Holland Bloorview and beyond. Because we know even with excellent client and family centred care, family engaged research and a culture of teaching and learning, we are still limited in advancing our vision unless we push it well beyond our doorstep.

I recently watched the documentary “Cancer: The Emperor of All Maladies,” inspired by the Pulitzer Prize-winning book by oncologist Dr. Siddhartha Mukherjee. The first installment of the documentary series depicts a turning point in the research related to cancer. The turning point was the result of the confluence of two things: the tireless advocacy of a clinician scientist Dr. Sidney Farber and his passion for finding a cure for childhood leukemia, coupled with philanthropist Mary Lasker’s determined advocacy through fundraising, media and government. Through the development of cancer as cause, the impact of the research was amplified beyond the work of one team, one hospital, and one group of children. Advocacy allows us to amplify the voices of our clients and families.

From disability to ability

Advocacy is about changing minds and hearts. A world of possibility for people with disabilities can’t be realized only by focusing on kids with disabilities and their families.

Firstly, we need to raise awareness of the reality that disability is located at least as much in society’s expectations and the limits imposed on our clients and the adults they become. This isn`t to say that times haven’t changed for the better: while once stairs could have meant higher education was simply unavailable to someone using a mobility device, now those classrooms are accessible by ramps and elevators and most students can’t imagine it otherwise.

But many less visible and obvious barriers still remain for people with disabilities. For example, as much as we can help build employment and life skills for Holland Bloorview clients through our excellent programs and explore inclusion in the workforce through research led by Sally Lindsay in our Bloorview Research Institute, the crisis level under-employment of people with disabilities won’t change until employers change. I’m heartened to see mainstream media talking about this reality, for example in a recent Globe and Mail Report on Business article.

Secondly, we need to collectively change our mental picture of what is “normal.” Good examples of this effort include the brilliant video titled “Because who is perfect?” by Pro Infirmis, a Swiss organization for people with disabilities (thanks to Crystal Chin, Holland Bloorview Family Advisory Committee member and patient-voice advocate, for reminding me of this video), and the work taking place in Dr. Ben Barry’s Fashion Diversity Lab at Ryerson University.

Thirdly, we need to put a face on disability to break through stigma. Just as great campaigns such as “Bell Let’s Talk” have begun to break down stigma around mental illness, we need to do the same for disability. We know that disability is closer than we sometimes think: a friend`s child with cerebral palsy, a co-worker`s grandchild with autism or a neighbour with a brain injury caused by an accident. Disability is close to home.

Leadership redux

At Holland Bloorview we will continue to create outstanding programs and services, lead in quality of clinical care, educate the next generation of physicians and health-care providers, develop innovative solutions in assistive devices in communication, prosthetics and more, and relentlessly push the boundaries of research and knowledge sharing. But that isn`t enough. We all, collectively, need to be advocates.

Every day leadership in childhood disability also means changing the world so that kids with disabilities will be adults with all the abilities a world of possibilities can provide.

Julia

@hanigsberg

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