Saturday, August 23, 2008

An Unwanted Journey: Day 1004 - Disabled in real life

"We're OK's better than the alternative." -Dan in Real Life

As the Olympics draw to a close, I'm thinking about how much of the Summer Paralympics in Beijing we'll see on TV. CBC has recently been granted permission for a new digital sports channel - CBC Sports Plus - which is slated to cover the Paralympics beginning 6-Sept-2008. Unlike the Olympic coverage, though, it seems we'll get only 2 hours of coverage on each of the 6, 7, 13, and 14 of September on CBC English TV.

I guess the disparity reflects what the general public wants to see. I get it.

But this year, as I face further surgery and chemotherapy beginning 10-Sept-2008 - right in the middle of the Beijing Paralympic Games - I'm reflecting again on what it means to be disabled. In the United States, for instance, cancer might easily be included under the definition of disability used by the Americans with Disabilities Act (ADA). In Ontario, we have the 2001 Accessibility for Ontarians with Disabilities Act (Ontario Regulation 429/07). Cancer Care Ontario is one of the customer service organizations participating in the ODA accessibility standards. There is even an online accessibility plan for our regional hospitals and cancer centre describing efforts to improve services to persons with disabilities.

Most of the time, accessibility in this context implies access to health services like cancer care for those with obvious long-term physical or mental disabilities. Cancer itself is one of those grey areas in defining disability. If the effects are long-term, then a patient with cancer might be considered disabled.

But all the debate is, when considered at a personal and immediate level, largely academic. Whether long- or short-term, when you face cancer treatment, you "feel" disabled. No matter how good the medical and support services, no matter how reasonable and accommodating your employer is, no matter how good your short- and long-term disability insurance're still faced with losses and setbacks not only with your health but with your family life and your career.

As the lead line says, it's still better than the alternative. Nonetheless, I am now entering a second period in my life when cancer is interrupting my career and turning me into a person with disability. There are moments, despite my best efforts at grace and grit, when those other aspects of facing cancer hurt. My physical limitations over the next 6 months will be quite significant. I'll be almost useless at home in helping around the house and yard. At work, I've got to transition responsibilities to other people and hope that I can still do some knowledge work that will make a difference.

But there's really no avoiding the fact that cancer is about so much more than the risk of premature death. Yes, I'm revising my will. I'm reviewing my life insurance policies and doing estate planning. But I'm also backing off professional volunteer work, parking professional certification and other related studies, and turning over projects to other colleagues.

Every meeting I attend these days, I find myself wondering whether I'll really be able to follow up recommendations and action plans and, if so, for how long and how effectively. Sometimes I wonder about if and when I will feel productive again after surgery and during chemotherapy. And, when I'm truly honest with myself, I even wonder sometimes whether colleagues are treating me with "kid gloves" because they feel sorry for me.

Don't misunderstand me. I am appreciative of those who care and do what they can to help. And I certainly understand why transitions must be made. But it still hurts. I think I'm gaining some perspective on what everyday life is like for people with disabilities.


Anonymous said...


Perhaps this will sound trite; however, I'll give it a go anyway. One of our major focal points with the people we currently supervise, it to break away from the concept that value and purpose is defined by numbers and/or productivity per se. We are hoping to free our people to consider what is their role in the collective whole and to be accountable to that - regardless of how that may appear in terms of statistical evaluation.

So much of our worth seems to base itself in what we are able to accomplish and how others esteem that accomplishment. And much of that accomplishment can be, to varying degrees, at the expense of others.

We have found that leadership goal to be a huge and complex monster to tackle.

Anyway, following Mom's amputation surgery, as her daughter, I was watching for one thing - whether 'she' was still there, or if somehow removing a physical part of her, the cancer had also stolen her essence of personhood from us.

Needless to say, she came back fighting. She chose to conquer perhaps the biggest battle at stake. That is one of the greatest gifts she has given her family and friends - the determination to continue to provide us with the gift of WHO she is.

As you say, "cancer doesn't define my life". But perhaps what cancer does is define one's life more fully - where it matters - where the rubber hits the road.

May you continue to hang in there with this unwanted journey until you reach well into the five digit count. It matters to us.


Don Spencer said...

Hey, Anita. Your mom is an incredible woman and a great example for me. Thanks for writing and sharing about one aspect of your work.