“What I believe”

By Jessica McKinney, PT, MS

To know anything about me is to expect me to dive in to a 15-minute talk about women’s health, and you wouldn’t be wrong—I live and breathe women’s health, rights, and advocacy.

I believe men also have needs in the space of health and rights, but I’ll be honest, those aren’t the issues I study and own, those aren’t the fights I fight. So we know I’m heading to women’s something or other, but I’ve a bit of nongendered ground to cover first.

I attended my first Graham Sessions two years ago. It was a great experience, and several memories are particularly vivid: It was the weekend of the first Women’s March, which I followed closely, an international display of woman’s voice, strength, and protest; I fractured my finger in a ridiculous paddle-boarding accident, because despite bad equipment and bad conditions, I wasn’t returning to Boston without getting in the water. And at one point in the meeting, Mike Eisenhart challenged us to describe what aligns all of us within and across PT, in all of its manifestations. We broke up into small groups to “discuss.” Within our group, I volunteered that I had been giving this some consideration for months prior to Graham Sessions, and explained that the concept of “agency” spoke to me as a unifying thread. Agency is defined as action or intervention, especially such as to produce a particular effect. Synonyms for agency include: action, activity, effect, influence, force, power, and work.

In social science, agency is the capacity of individuals to act independently and to make their own free choices. By contrast, structure is those factors of influence (such as social class, religion, gender, ethnicity, ability, customs, etc.) that determine or limit an agent and their decisions. In PT, when practicing at the top of our scope, we are attuned to both agency and structure.

Now I don’t recall every thought shared by the other groups, but I do know there was a lot of talk about “movement”—restoring movement, optimizing movement, etc. I’m all for movement, but thought, “Movement, but to what end?” Movement to allow someone to navigate stairs, and thus to return to their home after a hospital stay? Movement to allow someone to do the physical tasks of their occupation without pain or limitation? Movement to allow an athlete to compete at their highest level?

If yes to all, then the net outcome is a gain in agency by the individual, and the PT has facilitated and fostered this change. I believe that we as a PT community are united by our mutual work to foster agency, and we do this across practice settings: whether through acting as educators and training PT students, working in direct patient care, managing and leading teams, or working in the context of population health and health policy. Through it all I see a recurrent theme that when practicing at the top of our scope, we are endeavoring to foster agency for individuals, families, communities, organizations, or populations. We endeavor to have the work of our lives touch the lives of others by helping to build skills, independence, action, and/or decision making.

And guess what? I didn’t stand up to share that with the larger group. Nope. I was encouraged by my group to speak up, but I didn’t. If I’m honest, I was intimidated. As a matter of objective fact, there was not much diversity [in the room]: very little gender diversity, and even less so with respect to race. And that probably factored into me keeping quiet. While I knew several in the crowd, I wasn’t sure that I was really a part of the crowd. So I observed, I listened, and never found my voice at that meeting.

Since then, I’ve faced down plenty of fears and faced many, many more environments where I had to speak up as the only woman in the room or as the only one to call out inappropriate behaviors, yet this moment sure feels like the homecoming none of you knew I needed.

Agency likely explains why I was drawn to women’s health in the first place. As a student in my final clinical affiliation, I was unexpectedly—and serendipitously—placed in an all-female clinic. All female clinicians and staff, all female patients, and many of whom had come to PT to address the “women’s health” conditions that had made me and my classmates a bit giggly and squeamish in our token lecture on the subject. Then everything changed when I began to bear witness to women seeking PT care for such intimate and personal issues. A woman described what it would mean to her to be able to go on a date with her husband and sit through a movie without multiple trips to the bathroom. The PT’s role: to foster agency, to provide the right mix and balance of interventions to allow the woman to make this goal her reality.

I’ve spent the last 10 years meaningfully engaged in women’s health in low-resource settings, primarily in the eastern Democratic Republic of Congo (DRC). This is a region that has experienced more than a generation of active and festering conflict compiled upon multiple generations of overt and structural violence imposed by Belgian colonial powers. I believe that their stories matter. I believe that through no merit or achievement of my own, I was born in the USA, white and to two loving parents who believed in my value, my education, and could afford me protections not available to those in conflict settings. Similarly, neither did my friends, colleagues, or patients in Congo do anything to warrant their setting and circumstances. The least I can possibly do is build and faithfully sustain relationships with my friends and colleagues in Congo. I can bear witness, and with grace and respect, I can endeavor to share their stories when I reenter and live my privileged life here.

As in all conflict settings, sexualized violence is endemic in eastern Congo. From a health perspective, this yields physical and psychosocial trauma from primary assaults, but it also results in unintended pregnancies that can mete out their own negative health consequences. What is the role of PT in this context? More than I can cover in 15 minutes, but I want to share two examples consistent with my suggestion of “agency.”

Two years ago we were asked to consult with a young woman who was described to us as an “incurable” case of urinary incontinence. When we met with her, she was obviously reluctant. In the presence of her social worker, she shared elements of her story. That she was violently raped at nine years old, leaving her in pain and incontinent. Not the kind of incontinence we equate with stress or urgency urinary incontinence, but constant and steady leaking. She told us she had had nine total surgeries to attempt to repair her, to restore continence, and yet she continued to leak. The level of her trauma was evident and we—acting in our capacity as PTs—deemed any internal vaginal assessment inappropriate, and likely traumatic. Consistent with the concept of agency, we knew it was important for her to act independently and make her own free choices, not to feel as if one more thing was being done to her. Instead, we opened a pelvic anatomy poster, labeled in her language, and explained the function and proximity of the urogenital structures. In one of the most poignant moments I’ve ever witnessed in my life, she traced her fingers across the poster and under her breath uttered, “This is what happened to me. This is why I have my problems.” That was as therapeutic as anything I’ve been a part of. It didn’t require my hands on the patient, didn’t require exercises or equipment. It required being attuned to her as a human being and fostering her personal agency by sharing knowledge that we had available to share.

She is not alone in having urinary incontinence that is refractory to surgical intervention. An injury called a gynecologic fistula exists primarily in low-resource settings and is typically the consequence of obstructed labor and birth trauma. It creates gross damage within the pelvis such that a hole is created between the bladder and vagina, the rectum and the vagina, or both, resulting in constant leakage of urine and/or stool. In nearly all cases, this is only curable with surgery. However, surgery, even when available, does not cure all cases. Conservative estimates are that over 30 percent of women in the Congo have residual UI after surgery. If they remain incontinent after a series of attempted repairs, women are deemed incurable. And this is where the story typically ends.

But in our work as PTs, PTs who see and evaluate the situation and think, “What can I bring to bear here that will help this situation a little or a lot?”, we’ve recognized the health and therapeutic value of incontinence management solutions. We are in DRC twice a year and each time bring new reusable incontinence underwear and pads to try, we are creating our own prototypes to improve upon these and are working with a group of biomedical engineering students to discover new solutions. The incontinence may be incurable, but the impact of that health condition on the degree of disability she experiences may still be influenced negatively by neglecting the incontinence or positively by pursuing management strategies that could allow her to live her life more fully, even if incontinent. And that fosters agency.

Agency also underlies my recent decision to leave the private practice I started with my husband 15 years ago and take an industry position. From the time as a student I mentioned earlier and ever since, I have been pursuing clinical skill in the field of women’s health, as well as the challenge of how to scale access to this valuable care. The former never lost its appeal, but the latter… that has been a frustration. I worked hard to cultivate a team of women’s and pelvic health clinicians at our practice to match the demand for these services. The more clinics we had, the more clinicians we had, the more we continued to have a waiting list. We trained students, new grads, experienced PTs and OTs, at one time having the largest program for women’s and pelvic health in New England. We provided a lot of care, touched a lot of lives and had a lot of fun, but I became increasingly frustrated, feeling like this was not ever going to meet the demands for women’s and pelvic health services. I also increasingly became frustrated with the positioning of pelvic and women’s health issues as “specialty” and “niche.” We are a doctoring profession, we have level I evidence to support pelvic floor muscle training for urinary incontinence, and yet we have no expectation that our students graduate with entry level skill to act upon this. By the numbers alone, it doesn’t make sense. We have an estimated 20 million women in the United States with urinary incontinence—which is only one of the pelvic floor health conditions we can treat—a number that is close to the number of women with lower back pain, and one that dwarfs the numbers of men and women combined with neck pain or knee osteoarthritis. There are nearly 4 million births in the United States every year, and 80 percent of women will have at least one childbirth in her lifetime. Pregnancy and childbirth are massive physical and physiological events where PT undoubtedly has a role to play, and yet as a field, we are not owning this role.

There are around 200,000 PT FTEs [full-time equivalent], and the Section on Women’s Health (SoWH) —soon to be the Academy of Pelvic Health Physical Therapy—membership is just over 3,300. The numbers do not add up to promote and advance only 1:1 care as the way for PT to be involved, especially when it requires additional postgraduate training and doesn’t have the status of classic orthopedics or sports medicine. These are not specialty problems—women make up half of the population and more than half of the people in our profession—these are ubiquitous health issues and we have solid evidence we can help. And for now, I no longer believe I can help the most by being in the clinic.

After over a year of consulting for a digital health startup in Boston, I joined their executive team full time last year. We strive to leverage clinical expertise, evidence, novel sensor technologies and form factors, and digital applications to scale access to therapeutic interventions. I am not presently in clinical practice, but remain every bit a PT. I feel an enormous responsibility to my clinical colleagues, our field of PT, and the women who need care. I have been and will remain challenged in this role, but am confident it is the right place for me to be at this moment. Because if there is one more thing I believe, it is that I love song lyrics. The following lyric from the artist Michael Franti sums up all that I’ve just shared about what I believe in the context of women’s health, human rights, and access to care:

“When many little people in many little places
Do many little things, then the whole world changes
But sometimes not fast enough for me.”

Jessica L. McKinney, PT, MS, is co-founder of Marathon Physical Therapy & Sports Medicine, LLC, a Boston-area multidisciplinary practice with nine clinic locations and various offsite programs.