How Coming to Terms with my Disability Has Made me a Better Fundraiser

Age four. What do you remember from that time in your life? You likely have memories of your parents, your siblings, and a much loved pet or favourite toy. I have those treasured memories, but I also have the recollection of a diagnosis with a chronic disease called Charcot-Marie-Tooth. All these years later, turns out that was a gift.

Even if you know me personally, you likely don’t know anything about my disease. It’s not something I talk about, or at least I didn’t talk about until relatively recently. Though I have always chosen to make light of my symptoms and resulting physical challenges, I have finally realized that it is a part of me that makes me unique, so why not celebrate it? Perhaps a by-product on my impending 50th birthday…but I digress…

So, what is Charcot-Marie-Tooth? A definition from the Hereditary Neuropathy Foundation: “Charcot-Marie-Tooth disease (CMT), named after the three doctors who first identified it, is one of the most common inherited nerve disorders. CMT affects an estimated 1 in 2,500 people in the United States and 2.6 million people worldwide…. CMT is also commonly called hereditary sensory and motor neuropathy. This means that the disease runs in families and causes problems with the sensory and motor nerves, the nerves that run from the arms and legs to the spinal cord and brain. Parts of the nerves—the axons and the myelin—become damaged, [so] messages that run along the nerves move more slowly or have a weak signal. … [This] causes muscles in the feet, legs, and hands to lose strength. Often, the muscle loss happens unevenly, which causes deformity as muscles waste away (atrophy) at different rates.” [1]

As a genetic disease, my doctors knew what they were looking for as several family members also have CMT. This did not stop my parents from enrolling me in all manner of activities – and I am forever grateful for that. My Father led a very active and “normal” life with the disease, so there was no way I was going to do anything different! As a child I was enrolled in dance lessons, Brownies, swimming lessons – active and social engagement that my Mother has always espoused as important in a child’s development. In high school I played clarinet, volunteered at the local hospital, I was a cheerleader (!), yearbook editor and valedictorian of my graduating class – a normal life by all accounts. There was no dwelling on the challenges of the disease, it was a “get on with it and do what needs to be done” approach that resonated loud and clear in my family. I often joke that the British “stiff upper lip” stereotype definitely applied here.

I came to Fundraising as a career later in life. I was not formally educated as a fundraiser. I had a wonderful twenty-two year career in television production in Toronto. I moved to small town Ontario on the shores of Georgian Bay, and pursued a new life outside of the big city in 2007. In this pursuit I came upon an opportunity that has been, in retrospect, exactly what I needed.

As a professional Fundraiser for a small hospice organization, I have been privileged to see first-hand the power of kindness and generosity. Through my on-going education about fundraising I have come to appreciate that it is all about the impact – to best understand the impact that the donor wants to make and to find the ‘fit’ with the impact able to be made by the organization. I get to hear the donor stories, but I also get to hear the stories of those who are impacted, and this is where the connection to living with my own disability has been made for me. I have heard stories from others dealing with chronic disease and life-limiting illness. I have been witness to their challenges and struggles, but I have also been witness to their empowerment when they have found acceptance of their own health challenges. If they can be so brave, what has been impeding my acceptance of my own disability all this time?

If I am to be completely honest, part of my hesitation in self-identifying as a disabled person was because of my perception of the ‘label’ that comes with the term disabled. I never once saw my Father, Grandmother, Aunt or any other relative as anything other than ‘able’; differently-abled, sure, but not un-able or dis-able. Is this a blind spot in my perspective? You bet. But as Hamlet says in my favourite Shakespeare soliloquy: “aye, there’s the rub” . MY perspective and MY perception, and as we know the world is full of other perspectives. And I was afraid of the judgement of others because of their perspective and their perception of me if I was to self-identify as disabled.

Through my work as a Fundraiser, I have had the honour of coming to know some of the strongest people who have lived with chronic disease, yet the reality is that most of these individuals are at their end of life when I meet them. These people have opened up themselves, and their families, in the most vulnerable way – to receive care from perfect strangers – and it is yet other perfect strangers who have provided the funds to administer that care. I do not take this gift lightly, and it has changed me. I have learned to listen, really listen, and better appreciate the little things in life. I have learned to accept my own limitations, and even to honour them. Selfishly, it is very freeing to say without apology, this is the true me, and I have the incredible people with whom I have worked to thank for giving me the strength to do so. It has made me more mindful of others’ perspectives and has made me a better Fundraiser.

Janet Fairbridge is a Certified Fund Raising Executive and an Inclusion and Philanthropy Fellow with the AFP Foundation for Philanthropy – Canada.

[1] (What is Charcot-Marie-Tooth Disease?)