People with physical limitations must often adapt to inaccessible features of our environments. Many of these issues may not be apparent to someone who doesn’t need them, such as the absence of curb cuts, inconveniently-placed railings and door handles, absence of Braille signage, and uneven sidewalks. Many people think accessibility means elevators and ramps, but there’s much more depth that is often overlooked. Adapting can be quite tiring! When you can, help advocate for accessible communities.
People with physical limitations have so much to offer! Don’t dismiss us or view us as burdens or liabilities. Listen to us, engage with us as equals. We will do the same for you.
Asa part of our “Unstoppable” series, I had the pleasure of interviewing Dr. Kathleen Friel. Dr. Friel was born with cerebral palsy (CP), a neurological disability that affects her speech, walking, and fine motor skills. As she grew up, Kathleen’s interest in science blossomed. She earned a Ph.D. in neurophysiology and now leads a research laboratory at the Burke Neurological Institute in White Plains, New York, focused on finding new treatments for people with CP. In 2018, she was thrown for another loop, by being diagnosed with metastatic breast cancer (MBC). She continues to run a productive laboratory and is now even more passionate about using her knowledge and personal experiences to bring attention, research dollars, and effective therapies to CP and MBC.
Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?
When I was diagnosed with CP as a baby, a neurologist told my parents that I had no rehabilitative potential. Thankfully, my parents and I never saw that doctor again. I was raised to live as normal a life as possible. Although I probably worked harder than most kids as I learned to move and speak, to me, my body is normal. It’s what I’ve always known. As I grew up, my interest in science blossomed — likely due to the amount of time I spent in medical treatment. I earned a Ph.D. in neurophysiology, and now lead a research laboratory focused on finding new treatments for people with CP. In academia, it’s quite uncommon to find a lab head who has a disability, particularly one they were born with. I’m used to being the odd one. I’m often underestimated. People sometimes assume that I have an intellectual disability or that I don’t have much to say, because of my speech. Once people get to know me, all is usually well. I was happily living my life, when I got another interesting diagnosis: metastatic breast cancer (MBC).
I experienced sudden back pain in the spring of 2018. Doctors assumed it was due to my CP. Cancer was never mentioned as a likely possibility. However, a biopsy showed that cancer cells had traveled from my breast to my spine. The doctors found a tiny mass deep in my breast. It was missed by mammograms. We’re not sure why my cancer spread so quickly. My specific type of MBC is called de novo MBC. That means, when the cancer was first diagnosed, it had already spread beyond the breast. About 6–10% of people diagnosed with MBC have de novo MBC. The vast majority, over 90%, of people diagnosed with MBC previously had an earlier stage of breast cancer, which then spread. It was quite the awakening for me, to go from “you’re getting older, you have CP, back pain is normal,” to, “you have an incurable form of cancer, surprise!”
Do you feel comfortable sharing with us the story surrounding how you became disabled or became ill? What mental shift did you make to not let that “stop you”?
I was born with CP, so I have never known life without a disability. CP is caused by a brain injury or stroke during a baby’s early life. People with CP typically have challenges with walking and fine motor skills. Some people with CP, like me, also have speech impairments. Some others with CP can also have intellectual disabilities and challenges with vision. I’m very lucky — I walk and live independently. I drive, I cook, I clean, and I even have my own Netflix account.
My parents were key forces in teaching me not to let my disability stop me. I was simply expected to work hard and live as “normal” a life as possible. This has been a tremendous gift in my life. This mental focus served me well when I was diagnosed with MBC. I knew it couldn’t stop me, simple as that. During the two years since my MBC diagnosis, I earned multiple large grants for my research, got a promotion at work, and earned my black belt in taekwondo. I get tired more easily now, but I find myself feeling best when I’m actively engaged in work and society. One helpful strategy is to remember that life is not about me. Life is about the community. I remain actively involved at my church, particularly related to outreach to people on the margins of society. I still have so much to offer. I also enjoy being part of the MBC community, providing and receiving support. That’s one reason I am so honored to be a part of #FacingMBCTogether by Athenex Oncology. When I was diagnosed, I felt lost. Meeting others with MBC has been enriching, and I hope that my story can help others with MBC feel a bit less alone.
Can you tell our readers about the accomplishments you have been able to make despite your disability or illness ?
Throughout my life, at school and work, I’ve usually been the only person with a physical disability. I feel that a major accomplishment for me has been to succeed in academia. I’m so proud of my research group. I hope I serve as a motivator and supporter to them. I’ve had continuous grant funding for my work for more than 20 years. We have published many of our discoveries.
However, I hope that my greatest accomplishments are my relationships. I feel so lucky that I’ve met so many amazing people in my life. I am a proud daughter, sister, niece, aunt, godmother, and friend. Professional accomplishments are hollow without the community. I’d like to think that my experiences with disability and illness have contributed to my sense of interconnectedness. I don’t think of myself accomplishing much despite my health. Instead, I’ve been able to accomplish some things because of my health adventures. As much as I hope to be remembered as a pioneering scientist, my greatest accomplishment would be to be remembered as a cool aunt, loving family member, and generous friend.
What advice would you give to other people who have disabilities or limitations?
I would encourage people to be real. Sometimes I feel like I need to “sanitize” my discussions of health, so I don’t make people uncomfortable. Tumors are not the most uplifting lunch discussion topic! I’ve tried to be more honest about what MBC is like. One reason I really love the #FacingMBCTogether campaign is that it shows the good, the bad, and everything in between. It has helped people better understand that MBC isn’t about cute t-shirts and pink glitter. MBC is a difficult illness. We’re in treatment for the rest of our lives, meaning continued side effects, doctor visits, and scans to see if our cancer has spread further. It can be frightening, and I believe that naming our fears and our needs is very helpful. The #FacingMBCTogether website provides much more than education. The site features the ability for patients and caregivers to gather virtual support networks of friends and family. This includes the ability to post health-related updates, organize rides and meals, share photos, and create wish lists. I’ve learned that many people want to help me, but they don’t always know what to do. Asking for help can be difficult for me, and I know that when I ask, I should be as specific as possible. It’s wonderful to have a digital support network for communicating with family and friends.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
I’ve already mentioned how my parents have always been so instrumental in my success — they and my siblings have done so much! My MBC has definitely not been easy for any of them, and they stick by me. They bring humor and fun into the mix. Fairly early during the COVID pandemic, I developed some odd symptoms. I lost the ability to move my forehead and stick my tongue out straight. Thankfully these were painless. When I told my parents about it, they asked me why I was sticking my tongue out in the first place — I was raised better than that! For the record, I noticed it when I was brushing my teeth. It’s awesome to have people in my corner who listen seriously to my “cancer woes,” but don’t get too down over them. I truly can’t say enough about how much my parents have transformed my life and enabled me to thrive with whatever challenges come my way.
How have you used your success to bring goodness to the world?
I hope I have brought goodness to the world in at least two ways. I hope that my laboratory’s research is making a difference in the lives of children with CP. We’ve made some exciting discoveries showing that a boot-camp-like hand training intervention can not only improve hand function in kids with CP, but can also strengthen connections between the brain, spinal cord, and muscles. I also hope that my success as a person with CP and MBC can motivate others who deal with health issues. I refuse to be defined by my health, and I want to remove our culture’s stigma about people with disabilities being somehow “less than” someone who does not have a disability.
Can you share “5 things I wish people understood or knew about people with physical limitations” and why.
1. Physical limitations do not reflect upon a person’s personality, intellectual capacity, or maturity. Often, people assume I have an intellectual disability because of the way I move and speak. It is exhausting.
2. People with physical limitations have full lives. We are so much more than our impairments. We have families, friends, and social lives. We want to be fully included in all aspects of society. When you’re planning an outing with friends, consider the accessibility of the event space and activities.
3. People with physical limitations are the best experts on our own bodies. We follow medical advice. It can be frustrating when people provide unsolicited medical recommendations. Sometimes, the recommendations go beyond being unhelpful — they could harm us! Trust people with disabilities to do what is best for ourselves.
4. People with physical limitations must often adapt to inaccessible features of our environments. Many of these issues may not be apparent to someone who doesn’t need them, such as the absence of curb cuts, inconveniently-placed railings and door handles, absence of Braille signage, and uneven sidewalks. Many people think accessibility means elevators and ramps, but there’s much more depth that is often overlooked. Adapting can be quite tiring! When you can, help advocate for accessible communities.
5. People with physical limitations have so much to offer! Don’t dismiss us or view us as burdens or liabilities. Listen to us, engage with us as equals. We will do the same for you.
Can you please give us your favorite “Life Lesson Quote”?
“The best revenge is massive success.” — Frank Siantra. When people doubt my abilities, the most satisfying response is to do the exact thing that people doubt I can do. To do it well, without arrogance. Success doesn’t have to mean money or rewards — success, to me, is finding joy and peace in whatever comes my way.
We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂
I would love to sit down with Oprah Winfrey! I believe strongly in the power of education. Oprah has used her status to educate our country on issues of social justice in ways that few others have done. Oprah made it cool to read. She introduced us all to Barack Obama.
I wish more people would take the time to become educated about disabilities and MBC. So much of the struggle that patients face is rooted in the ignorance of others. I believe that Oprah would have some great advice for me about how to change the culture, and perhaps she’d even get involved in my dream to educate more people about MBC and physical disabilities.
Please visit www.facingmbctogether.com to read more about MBC, and to meet some fabulous people who are living with MBC.