Chapter 105: disABILITY
Dear Readers and Friends,
This blog post is unlike my usual posts. This one is a call to action for inclusivity.
The “Minnesota nice” in me is scared to ask for more from you. I ask you for too much already: your time, your understanding, your comments, and occasionally, your donations to help in the underfunded, under-recognized realm of brain tumor research.
My ask today is different. Although most of my non-medical time is spent on advocacy activities (writing, speaking, networking) for brain cancer awareness, I am also passionate about many other causes, especially those that, like cancer, impact an individual for life and carry a stigma or challenge. As difficult gifts abound, there is no shortage of causes in need of a passionate, emboldened voice.
Elephant, Lotus, Brain Tumor started as my little online diary and turned into a blog with over 55,000 readers from more than 100 countries. I mean- WHAT?!
That’s terrifying and entirely amazing. It gives me a voice I never expected to have. Today, I’m dedicating my voice to disability awareness.
Let’s start with a fact I don’t often disclose: I live with a cancer-related disability.
Brain surgeries, radiation therapy, and a history of tumor-related seizures fortunately did not strip me of my cognitive ability to practice medicine, work, write, read, or speak, but they did change the way I am able to do these things. As a physician, I was trained to work at all hours of the day and night. I was expected to easily flip my sleep schedule from days to nights and back again. It was normal to work until midnight and come back at 5am the next day ready and able to take care of patients.
Cancer changed that for me. Regular sleep is not just a want now, it is a necessity. Without a solid 8+ hours of sleep, I’m mentally useless. The option of working a late or overnight shift has ended for me. This is frustrating, not only because I want to help my colleagues but also because it gives me one more unneeded reminder that I am different now.
There is stigma in the medical field around physician illness and disability. It’s wrong, but it’s true. Because of this, there is a fear among medical trainees of reporting things like mental illness and disability. I could go on about this all day, but that is not the point of this blog. The point is: I was scared to admit both of these things. I admitted I faced depression in an early blog post, and once that cat was out of the bag, I found bravery I never knew I had. I was free to be open, vulnerable, and help other medical trainees do the same. But, admission of a disability was harder for me.
The first time I asked for disability accommodations, my boss did not believe me. I faced criticism, push-back, and left the meeting in tears.
I was told, “everyone’s problems feel big to them” and therefore, no schedule exceptions could be made.
This shocked me and saddened me. I was a new employee, fresh out of medical residency, working my hardest to make a good impression. I was terrified to admit I had a disability, and when I finally did, I met resistance and guilt.
Before you get too worked up here, I want to say that this individual made a mistake and later apologized to me. When I escalated my need for disability accommodations to my colleagues and company leadership, they were nothing but supportive. They thanked me for being open about my health, my needs, and what accommodations would help me to be the best physician I can be for my patients.
I bring up this example because this very first encounter stayed with me. It was traumatic and heartbreaking. I felt alone, shameful, and misunderstood.
My first thoughts after this occurred were twofold:
I’m a public speaker. I spend hours writing and speaking openly about my illness. Not everyone does this. I know hundreds of cancer warriors who do not feel comfortable telling family members, let alone coworkers, that they are sick. What would they do in this situation? If I left this meeting in tears, how traumatizing would this experience be for someone less comfortable talking about their illness?
How isolated and unheard do people with more severe disabilities feel? Do they have equal opportunities for employment? Are there programs in place that can help support individuals living with disability who want to be students, employees, volunteers?
This experience was, I suppose, another of many difficult gifts. It opened my eyes to the bias and stigma so many groups face. Chronic illness, disability, and cancer are just the tip of the iceberg.
Shortly after this experience, I started to volunteer with an organization called Best Buddies. Best Buddies International is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment, leadership development, and inclusive living for individuals with intellectual and developmental disabilities (IDD).
I was introduced to Best Buddies a few years back when I gave one of my first corporate talks at JLL, a global commercial real estate services company who launched an employment program for people with IDD in partnership with Best Buddies. I was speaking at this event about invisible illness/disability and how important it is to remember that our colleagues may have challenges we cannot see or understand. Empathy, support, and inclusion are essential in the workplace. I gave this talk long before my own traumatic experience, long before I admitted to myself or my colleagues that I too had a disability. Now, this message took new meaning.
I found that my experiences with chronic illness and physical disability have similarities to experiences of people living with IDD. Both IDD and chronic physical illness can be invisible, stigmatizing, isolating, and disempowering. These can impact us not only in the workplace, but in our social circles, peer groups, schools, communities, and internally as we navigate a life with challenges unimaginable to many.
I believe that with support, tools, and guidance from a community, those of us with invisible illness become visible and empowered. The power of friendship and advocacy is beyond measure, for when one person helps another and this is paid forward, the ripple effect can extend indefinitely. What is stronger than an entire world of people given opportunity and encouragement to be the most successful, compassionate, and empowered versions of themselves possible? Perhaps love, but beyond this, I am unsure.
Last year, I searched out Best Buddies Minnesota and entered their “citizens” program, which supports the development of friendships between adults with and without IDD. My buddy, Katie, has become a true friend.
Ok, here is where I circle back to my call to action. I figured an ask without first sharing the vulnerable situation that got me here would be unfair.
This year, I have the honor of being nominated as a Champion Candidate for the 2022 Best Buddies Minnesota Champion of the Year campaign. This campaign is Best Buddies MN’s largest fundraising event of the year. Funds raised help grow and sustain friendship, job and leadership development programs for individuals with IDD throughout MN. With Katie, my best buddy and mission partner, I will spend the next two months raising money for this amazing organization which promotes inclusion for all.
Please consider helping fund this great cause:
Donate https://www.bestbuddieschampion.org/minnesota/supporting/#courtney
If you’re local (or like to travel) and want to attend the November 11th gala, please join me! You can purchase an individual ticket or consider purchasing a table credited to my campaign. This will be a fun evening with incredible food, beverages, music, auctions, and inspiring stories.
If you own a business or know a business that would like to be involved, please consider being a corporate Partner for the Gala. The benefits are incredible and the sooner you commit the more marketing benefits you can receive.
Donate items for the live and silent action: Gift cards, homemade items, vacation rentals, experiences, etc.
Join me for a fundraising event at a local brewery: Wednesday, October 12 6pm-10pm Lake Monster Brewing in St. Paul. Come cheers to inclusion!!
Ok, you lovely people. Thanks for your time, as always. As a quick update, I’m now a hospital medicine physician and loving my new job. My colleagues are so supportive, and my leadership fully respects my disability accommodation needs.
To any fellow physicians or trainees reading this: this was a scary experience. However, I did not get fired. I did not lose credibility. If anything, I gained it. I asked for what I needed, and it allowed me to not only keep my job, but actually create a more fulfilling, ideal role. I use the knowledge I have gained to help patients and peers advocate for their own needs. How can we help others if we cannot help ourselves?
Also- seek out the Best Buddies chapter in your community and see the amazing ways you too can help promote inclusion and gain amazing friends in the process.
Fondly,
Courtney
©CB2022