Disability and the Dilemma of Accessing Quality Women’s Healthcare: A Cautionary Tale
By H. Lee
I am a woman with muscular dystrophy in her late 30s who uses a power wheelchair. In many ways, I have been pretty private about the medical aspects of my life. A lot of people I know do not know what I went through the past couple years, only close family and friends. The pain that I feel from my experience is still raw and traumatic so it is hard to open up about this. I really want to share my story with the Disability Visibility Project because it is an important story to share as well as a cautionary tale. My story is about my experience as a woman with a disability accessing women’s healthcare in the United States.
Access to quality, accessible women’s healthcare has always been very difficult for me. That is why getting regular pap smears and gynecological exams were not something I did regularly. I have been turned away from exams due to clinic staff telling me they could not lift me on the table because of liability reasons. I had a gynecologist that was completely condescending and talked to me like a child and other ones that spoke to the person that brought me to the exam instead of me. After many failed attempts, I was finally “accommodated” at Planned Parenthood. By accommodation, it meant having my pelvic exam and pap smear in the basement of the clinic where they performed abortions since they have tables they could lower and they could help me there. But exams were awkward, severely painful, and I bled from being scraped up too hard because they could not easily reach my cervix because they did not know how to handle my curved spine and body. As a result, by the age of 31, I had only five or six pap smears in my life.
Fast forward to 2013, I was 35 and had not had a pap smear in 4 years. I stopped going because the experience was so frustrating. I never worried too much about not getting regular exams until a close friend of one of my dearest friends died of ovarian cancer at 37. And although pap smears and pelvic exams do not detect ovarian cancer but cervical cancer, it got me thinking again about gynecological health. I decided that I should get a gynecological exam, but I did not want to have a repeat of past experiences so I did research and found a clinic that served people with disabilities.
I made an appointment and it took two buses and one and a half hours to get there but I thought it would be worth it, but I was wrong. The clinic website mentioned they had a special table designed to be more accessible for women with disabilities to get a gynecological exam. But, the table looked old and dirty like it had not been used in a while. The doctor actually asked me if I could get on a high table since he wasn’t sure that the other accessible table even worked. I was livid, how could this clinic that claimed to serve people with disabilities not have an accessible exam table that functioned? I told him I could not get on the table and he ended up figuring out how the accessible one worked but I ended up only having a basic pap smear because even this doctor that treated people with disabilities apparently did not know how to work with somebody with muscular dystrophy.
One week later I got a call that my pap smear was abnormal, I had a high grade form of pre-cancer, CIN III or carcinoma in situ (CIS), and would need a biopsy to confirm it. The news was shocking, but at least it was not cancer. My primary doctor referred me to get a colposcopy. I made the appointment and went to see a doctor who was a specialist. She was nice, treated me like an adult, and the exam room looked accessible, I thought great finally maybe I’ll have a smooth exam. I was wrong again.
They got me on the table and tried to perform the colposcopy, which is similar to a more detailed version of a pap smear and pelvic exam except they use a special magnifying device. Again the doctor could not reach my cervix because of my curved back with the equipment she had in her office. She got on the floor and tried many ways but could not get enough of a sample. She apologized and she said she would have her colleague from the women’s hospital call me to set up an appointment there. They called me the next day and I set a time for a visit but it was canceled at the last minute. I am beyond frustrated at this point. I finally get an appointment and waited a while before being seen. Four people including a nurse, a doctor, two medical students, and my mom were in that room with me. When I was on the table they raised it and tilted it until I was almost upside down. The doctor saw that I had an abnormal growth that she believed was pre-cancer so she asked me if just wanted to have it removed right now in the office, they could do a simple procedure that could be sent for biopsy but in removing the sample it would also be the treatment. I agreed because I did not want to come back. It was the most excruciating painful experience and I screamed bloody murder the whole time. They did what they could but were not sure they could get everything. I was supposed to bleed a little for a couple days and get the results back in a week and that should have been the end of it.
I ended up bleeding for a month and expelled large blood clots from my vagina. I had to return to the hospital multiple times to try to stop the bleeding and saw many more doctors that did not know how to handle my body. During this time period, I was hospitalized for chest pain, high blood pressure, and tachycardia and was almost killed by the incompetent doctors at another hospital (this is a whole other story). My biopsy did indicate that I had a high grade form of pre-cancer but that they likely removed it when they did the procedure. I was to come back in six months. The nurse decided to schedule me with the most senior and expert doctor in gynecology and gynecological oncology for my six-month follow-up and for the first time I had a smooth checkup. The doctor knew how to examine me. My results were better and the pre-cancer went from high grade to low grade, CIN I. I would be checked again in another six months but at least I finally had a good doctor.
Then in 2014, I found out I had cervical cancer and would need to have a total hysterectomy. It was at the earliest micro stages so I was lucky. My husband I never wanted to have children. But, not to have a child was my choice but now it was being taken away from me, I could not stop crying. In my thirties, I would no longer have a cervix, uterus, or fallopian tubes. I was in shock. That same year I had a bad bout of pneumonia and had a horrible experience at the hospital where I was treated in a demeaning and inhumane way. One doctor also prescribed me an antibiotic called Levofloxacin that caused me permanent gastrointestinal issues, which I later discovered is not good for many people with neuromuscular disability.
Later that summer, I was diagnosed with low lung function, 25 % capacity. So during this time I had to get a VPAP, Cough Assist, and The Vest Airway Clearance System. These are machines that help my lungs stay healthy. Doctors were concerned about the effects of anesthesia on me. It took months to prepare me for the surgery and I and those close to me were scared if I could make it. The night before my surgery I had a breakdown and could not stop crying as my husband held me in his arms, I was worried that I would not wake up from surgery and never see my loved ones again. Anesthesia is a scary thing for people with muscular dystrophy and given my recent lung issues, it was particularly risky. But, I was lucky this time because I finally had a good team of doctors that had a good understanding of muscular dystrophy. Even my surgeon and anesthesiologist had worked on patients with neuromuscular disability and they both worked closely with my pulmonologist. It made all the difference in the world and my surgery and recovery were successful.
Because so much of the past few years were focused on fighting for my life, concentrating on my recovery, and then a major move across country, I had not fully processed the mental and emotional toll my experience took on me. I have felt a sense of loss reading the posts of mothers with muscular dystrophy online because I will never get that experience. Yes, I never had a strong maternal desire, but that was my choice. And with choices, you can always change your mind. When that choice is taken from you there is so much anger and grief. I really feel this would not had happened if I had yearly pap tests, it takes years for cervical cancer to develop and pap smears protect women from this. There is also a vaccine, that girls as young as 11 can get to prevent cervical cancer.
According to the 2010 US Census there were over 156 million females in the United States. And according to the CDC, Centers for Disease Control and Prevention, only 12,000 women get cervical cancer each year. The lack of accessible women’s healthcare, both physical and attitudinal, caused me and my fellow women with disabilities not to seek this care. When I finally did, doctors did not know enough about my body to treat it properly. I believe that they did not remove all of my pre-cancer the first time because they did not know had to deal with my body and reach my cervix. And I believe my past pap smears and pelvic exams were never done properly. I am just lucky it was not a cancer that spread. But, my cervical cancer could have been prevented if I had the right care all along. My last check-up in spring of 2016 was cancer-free, and the first normal pap test in almost 3 years.
It is sad that it took a pre-cancer and cancer diagnosis for me to finally receive the proper gynecological healthcare but that is what it entailed. I finally found good providers but due to a recent move, it has made me feel uneasy and scared. It took me a lifetime to find quality care and now I have to start over again. I am still flying back to my hometown to see my doctors, but I know I cannot do this indefinitely.
My current women’s health doctor talks to me directly about my health in a respectful manner. The head nurse of the department, who is always helpful and a wealth of knowledge, was the one that advocated for me to even get that initial appointment with my doctor. She knew that he would be the one that would be able to work with me successfully based on her own experience working with him. My doctor, nurse, and the resident doctors have all assisted with lifting, sliding, and positioning me. My doctor speaks to me directly regarding test results and answers all questions that I have. Most importantly, I feel like I matter as a full human being by people that care and I am treated like an adult. They actually talked to me about sexual health and pleasure post-hysterectomy whereas most doctors assume you do not have sex if you are disabled.
Diversity training that includes working with patients with disabilities should be a focus in medical school as well as ongoing throughout a doctor’s career. Especially when working in women’s healthcare, medical providers’ innate stereotypes or prejudices about women with disabilities such as believing we are asexual, childlike, or unable to have children can hinder their ability to provide quality women’s healthcare. We have the same parts as any other woman, maybe in a different package, but to put it bluntly we have breasts and vaginas and everything in between. Women with disabilities have sex, have children and need regular pap smears, pelvic exams, mammograms, birth control, etc. It is easy for medical providers to view people with disabilities from only a medical model perspective, to see us as just as illness or disease because it is ingrained into their education and training. It may be difficult to work with a patient whose diagnosis you are not familiar with and it might be easy for a provider to just say “we can’t help you.” Not many doctors know much about muscular dystrophy or the unique needs and features of my body.
I would love it if more doctors would take me seriously and listen to my needs. I am the one that lives in this body and I can tell you what is the norm for me or how you can handle my body. I’ve had so many arrogant doctors throughout my life just talk over me and blow me off since they are the “expert.” It would also be great if an apprehensive provider would consult with another doctor that may be more familiar with muscular dystrophy or whatever disability their patient has to get a better background on how to treat them. The reason that my care and recovery went so well is that all the doctors at this hospital had no egos, they worked in tangent with one another across departments for the good of their patient, me. That is something I had not experienced before. They also kept in contact with my primary care doctor. Most importantly, they listened to me. I also cannot emphasize how important it is to be a self-advocate for yourself. I am the one that brought up the anesthesia concern in the first place to my surgeon. Also, in the past having a strong voice on my own behalf has likely meant the difference between life and death for me.
More physical accessibility is needed especially in exam rooms. Universal design has been incorporated into architecture in recent years and the same basic principles should apply to hospitals and clinics. There should be no reason why they could not make exam rooms wider and with exam tables that raise and lower. These are things that would benefit not only people with disabilities, but all patients as well as doctors and nurses. The exam room that my appointments are in is a large wheelchair accessible room with enough space for my wheelchair to turn and also park while I am being examined. The exam table is one that raises, lowers, and tilts at the touch of a button. There is a private, wheelchair accessible bathroom attached to the exam room. There is so much more to be done, but having accessible exams rooms is a start and it is disconcerting that in 2016 the majority of exam rooms don’t provide even basic access.
After my experience, I have faced depression quite often. I have had lingering and permanent health issues due to my surgery. After this scare with cervical cancer, I also live with the fear of developing breast cancer one day since I have family history of this. I’ve had a couple mammograms before and although they had accessible equipment, it was still difficult to do because of my limited muscle strength and since I have dense breast tissue the results were also difficult to read. So, I always fear a repeat of what happened to me before, but worry that next time I may not be as lucky.
I hope for the day that women with disabilities and all people with disabilities will be able to access the care that they need without barriers. I don’t want any woman to go through what I had to go through, but I also know that I was lucky that they caught the cancer in time. So many women with disabilities are not as lucky and lose their lives because of inadequate healthcare. I can’t emphasize how important it is for women with disabilities to receive timely screenings like pap tests and mammograms, they are lifesaving. But, I totally understand why they often don’t because of the frustration they feel and the obstacles they face. But, even if they face barriers, it is important to fight on and not give up. I think that doctors and health care providers need to be better informed about how to treat people with disabilities. Not only do they need to provide better physical accessibility but there are also attitudinal barriers that we must face from providers who treat us like children or worse yet, less than human. It is ridiculous that in 2016, 26 years after the passage of the Americans with Disabilities Act (ADA) that we must, fight and claw in order to be provided basic healthcare. This should not be the case; it should not have to be as difficult. Healthcare is a fundamental right.
*All images CC0 Public Domain from Pixabay.com
Centering Disabled People in Conversations About Menstruation, s.e. smith (August 4, 2016)
More than Ramps: A Guide to Improving Health Care Quality and Access for People with Disabilities, Lisa Iezzoni, Bonnie O’Day (2005)
Women with Disabilities, American College of Obstetricians and Gynecologists