Over the past two years of the pandemic, we have witnessed the rise of telehealth services, but now that popularity is waning in the cultural push to “return to normal,” threatening to leave behind many for whom telehealth has become a lifeline.
I’ve observed members within the disability community share rightful concerns about the reduction in availability of telehealth services, which allowed them to obtain the medical support they need from the safety of their own homes. Telehealth services have meant that disabled people could access care while significantly lessening their risk of exposure to and possible infection by COVID-19, as well as lower the chance they could unintentionally spread it to others who were more susceptible. The fact is that the pandemic isn’t over no matter how much officials and policymakers are determined to “return to normal” and many disabled people still feel it’s not safe for them to venture out in public, even to the doctor’s office, especially with much of the public abandoning simple health measures like wearing masks and social distancing.
I’ve also had similar concerns since the pandemic began and only recently had my first in-office visit of the pandemic. Thankfully it went well – my physician, who happens to be the first Black doctor I have had, understood my concerns and took the necessary precautions with me. Everyone in the office — staff, doctors, and patients — were masked. I have switched from wearing surgical masks to N95s or KN95s (based on need), which I wore without hassle. After my visit, I began to consider what disabled women of color like myself are thinking about if they are being pushed to do in-office doctors’ visits while the pandemic still rages on.
White disabled voices still tend to dominate and oversaturate social media and news media discussions about the pandemic and how disabled communities are being affected. But race and gender, and the ways they intersect with disability, make it imperative to highlight what changes in access to telehealth might mean for Black, Indigenous, and other women of color, particularly given the medical racism that Black women already contend with in obtaining comprehensive health care, and how racial profiling like anti-Asian violence can impact BIWOC traveling to in-person medical visits. What “safer in public” looks like for disabled BIWOC in the pandemic is still very much relative.
I had the opportunity to interview two disabled women of color who shared their candid experiences with telehealth and why it matters to them that access to telehealth services shouldn’t be diminished by the general public’s desire to “return to in-person everything.” Heather Watkins is a Black Gen-Xer and disabled woman from Boston, and the pandemic was the first time she was able to access medical services virtually, and Rachel M. is an Asian-American Millennial and disabled woman from Seattle. Both talked with me about how their access to medical care has been impacted by the pandemic and their concerns for the future.
This interview has been edited for clarity and length.
Vilissa Thompson: How has it been different having virtual appointments with your doctors rather than having to go to their offices? How has this changed what medical engagement is like for you?
Rachel M.: Overall, my access to medical care has greatly improved since the pandemic began. Prior to the pandemic, I had some access to telehealth through the small health clinic I receive primary care services from, [but] I would need to physically go to their office to get prior authorizations for my medications. I would need to take time off of work to drive 20 minutes, [then] wait 30 minutes to an hour or so before being seen for a few minutes tops by my pulmonologist. I’m fortunate that I’m able to drive, as public transportation would likely require even more time away from my desk. This was always a frustrating experience because of my disabilities. I would get so fatigued, and I never understood why it had to be a trip in the first place. The pulmonologist never did physical exams or diagnostic tests during these prior authorization appointments. They simply asked me how the medication was working for me and if I was experiencing any new symptoms.
My pulmonologist began to offer telehealth appointments during COVID. This cut down my out-of-office time at work from 1.5 – 2 hours to just a few minutes. I didn’t need to do the walking and standing that typically drains my energy for the rest of the day, and I didn’t need to risk picking up bacteria or viruses like I would from an in-person visit.
Heather Watkins: Since the pandemic began, my access to medical care has been through telehealth services, including in-home blood draws, vaccines, and booster shots–the latter [was] coordinated by our state’s in-home vaccine program for elders, disabled folks, and others who have no safe access to vaccine sites.
[Virtual access] was such a welcomed and accessible way for me to obtain care, ask questions, and use the “patient portal” which has all of my health info. When the lab work was uploaded I could access the results and leave any follow-up questions or request future appointments.
Thompson: With the current push for in-office visits, have you witnessed similar sentiments [promoting in-office over telehealth] proclaimed by the medical offices you utilize?
Watkins: Yes, they have begun scheduling in-person visits beginning in April. I’m still hesitant about it because the pandemic is not over and there is a layer of anxiety [over the] rush for everyone to “get back to normal” when “normal” wasn’t that great for many disabled persons (apparent, non-apparent, chronic illness) to begin with.
They have all the [COVID-19 safety] information on their website requiring masks, using hand sanitizers, physical distancing, etc. Although virtual visits are still an option for the time being, my fear is that this option, which is really an accessibility feature and helpful in mitigating healthcare disparities, may be eliminated in the coming months.
Rachel: My primary care provider has never pushed in-person visits unless required for diagnosis or treatment. As of now, my pulmonologist is still offering virtual appointments, but I’ve needed to ask for them each time. At this time, I’m not aware of the protocols that may be in effect at my doctor’s office.
Thompson: Some medical professionals may not understand how disabled people with overlapping marginalizations will be impacted greatly by this insistence on in-office visits, particularly for those who are a part of communities heavily hit by COVID. How are race, disability, and gender being ignored in public discussions about access to telehealth?
Rachel: As a disabled woman of color with non-apparent, rare disabilities, having the option to do telehealth appointments has helped create a safe barrier between myself and the provider. I have a lot of anxiety when needing to find a new provider, for example, when my health insurance changes. I’ve had so many frustrating experiences with providers patronizing me or chastising me, even refusing to prescribe me medications I need and have successfully been taking for years. Most of the time, these have been middle-aged white cis/het male providers. It sucks to take time off of work, trek over to an appointment, and expect for it to be a simple introduction to discuss the transfer of my prescriptions and medical records, for it to end up a nightmare. On top of the waste of time and the emotional distress, it’s added expenses: the appointment fee, the cost for gas, the cost for parking, the unpaid time away from work.
Watkins: [The push to “return to normal”] doesn’t seem to include and consider the complexities of many communities of color and how the impact of [the] pandemic has wreaked such havoc. It took considerably longer to get messaging out, coordinate, and distribute vaccine access. Large parts of the community are still playing catchup, and that includes the mental health aspects of just trying to survive each day with changing protocols and new variants emerging. We need a return that centers disabled persons who are multiply marginalized and emphasizes mask-wearing as a layer of protection, not an infringement of personal rights since it’s become so politicized and at times even a marker for bullying.
Thompson: Healthcare professionals must understand that providing multiple ways of engagement not only keeps clients safe, it also minimizes the access barriers that were persistent when in-office was deemed the “only” valid option. What do you think some healthcare professionals are missing about why virtual access shouldn’t be limited as medical facilities open up more to in-person appointments again?
Rachel: Unless in-person visits are needed to perform diagnostic tests or provide treatments, continuing to offer telehealth services just makes sense. If someone is sick with even a cold or flu, why should they unnecessarily commute to their health provider’s office, especially if there is inclement weather or the patient doesn’t drive? If someone is barely able to talk without getting into a coughing fit, why can’t they just communicate with their doctor through a messaging system? In-person visits can still be offered to folks who prefer meeting with their provider face-to-face to discuss their health but lowering COVID rates shouldn’t mean an end to telehealth.
Watkins: I wish [medical providers] knew how valuable and necessary this service is for many people, especially disabled folks, many of whom are people of color who are being impacted by pandemic at higher rates and may often have to risk exposure to receive care. Telehealth options increase access to care from home and/or setting with Wi-Fi connection, helps offset transportation and childcare costs, time off from work/school. This service has saved and conserved physical and mental energy, giving some [of us] peace of mind.
Thompson: A primary concern about the “return to normal” rhetoric is the fear that those most vulnerable to COVID will be left behind, and not just within medical settings and access. What are some of the health complications you’re at risk for if you get COVID? What are people not considering about what “normal” in a pandemic looks for disabled and high-risk folks?
Rachel: I am continuing to wear a mask despite relaxed mask mandates because of my personal health and those around me. I’ve struggled with respiratory illnesses since I was a child–even with colds and [cases of the] flu, I tend to get more severe symptoms and stay sick for longer than my peers. I’m regularly running out of sick leave because of my invisible disabilities [as well].
It’s not easy for me to wear a mask, especially since I’m usually standing or walking around when wearing one. When we have heavy wildfire smoke here in the summers, the smoke irritates my lungs, and the coughing aggravates my tachycardia, [but] breathing also takes more work with a mask. Simple things like taking my dog on a walk around the block can make my heart rate jump up to 180 BPM when wearing a mask.
I’ve stayed at home for the most part since the pandemic started. I haven’t flown home to Hawai’i to see my family [even though] some of the elders in my family have passed. My childhood dog and cat passed. I felt so bitter and angry towards people flying to Hawai’i to vacation, particularly [at] the height of the pandemic before vaccines were available. It can be frustrating feeling like you are sacrificing so much to keep yourself and others safe, only to watch other people continue to live their lives normally. I don’t understand how traveling for leisure to an isolated destination with a dense population during a pandemic makes any sense, particularly since Hawai’i has relatively limited availability of medical facilities and supplies.
Watkins: Oh, it has me very concerned because I’m not seeing this rush take into consideration the many disabled folks who have non-apparent and chronic illnesses, or may be immuno-compromised, transplant recipients, undergoing chemo, and a host of factors that might put them at greater risk from these relaxed standards and protocols when new variants are still popping up.
I have a congenital neuromuscular disability which impacts not only my mobility but respiratory muscles as well so there’s a layer of anxiety since I already use a vent when resting and sleeping at night. I’m mindful of risk factors, protocols, size of gatherings, and [I] know it may be a while longer before I feel comfortable being in [the] company of bigger groups regardless of occasion/event.
Thompson: Given that we cannot discuss COVID or telehealth access without a diverse lens, what are some of the matters that healthcare professionals and providers should take into serious consideration right now?
Watkins: As a Black disabled woman who was sandwiched between caring for self, children, and aging parents under one roof, I know many who exist in this continuum. Telehealth services increase access [to medical care], especially when you may not be able to leave the house. It can help conserve physical and mental energy that could be applied elsewhere in your day and routine. The increased access and limited risk exposure gave me peace of mind since it was less hassle and worry in getting my medical needs met. Adopting and practicing a more patient-centered practice should be the goal of every healthcare provider where possible.
Rachel: Medical professionals should advocate for telehealth with their peers in the medical field because it impacts disabled people, particularly disabled women/femmes of color. As patients, we get shut down, gaslit, and endangered just for being who we are. Advocating for ourselves to healthcare providers can make us more vulnerable to implicit (or explicit) medicalized racism, ableism, sexism, transphobia, and fatphobia. Medical professionals need to hear the need for continued telehealth from all sides, not just from patients.
Thompson: As disabled people continue to navigate uncertain circumstances within the medical arena and in society right now regarding safety, access, and the ongoing realities of the pandemic, what are some things that we can all hold on to when we feel alone in these increasing moments of vulnerability and anxiety?
Watkins: I’d say hang in there, lend yourself compassion, find and lean on your support system that includes other disabled women/femmes of color where you might find resources, swap tips, info, and frustrations, find life hacks and workarounds, draw strength from and cultivate joy. So many of us have had to find our own customized ways of keeping ourselves and loved ones safe. Please know that you, in all of your glorious granularity, matter.
Rachel: Your concerns and frustrations are valid. Even if you don’t have access to alternative providers or services, know that your concern for your health and the means in which you seek health care are valid.