The lives of people with disabilities are often medicalized, but our sexual health is mostly ignored. Doctors tend to be a big part of our lives, but they don’t ask about our sex life.
You would think something like getting tested for sexually transmitted diseases (STDs) would be simple. Usually, people can go to their doctor or to a clinic like Planned Parenthood and have a whole workup done. But for me, as a queer person with a “severe” physical disability, it’s a major pain in the ass.
When I realized I needed an STD test, I emailed my gynecologist and asked for an appointment. Her response was, “Why?” Apparently, the thought of me having sex was ridiculous to her. I had been going to her for 7 years at this point. I only kept going to her because she could do my pap smear in an accessible way.
I explained I was about to start a new sexual relationship and I always get tested before sleeping with someone. Her response to this was something to the effect of, “You don’t need to worry about STDs. You’re queer.” Untrue. I then tried to educate her about safer sex for queer people– you know, with condoms and gloves. She wrote back: “Condoms? And you don’t need gloves.”
At this point, I wanted to bash my head against the wall. I also wanted to avoid having my health insurance send a copy of the bill to my house for my parents to gawk at. My parents are generally cool, but they’re of the generation that thinks you should get tested only after you’ve contracted something– not as a preventative measure. So once again, I emailed my doctor, telling her that I wanted to pay out of pocket. Her response was, “Seriously?” Finally, she told me that after a pap smear for HPV testing, blood work for HIV and syphilis, and urine for chlamydia and gonorrhea, it would be around $315 in cold hard cash. So one of my assistants suggested Planned Parenthood, where it would all probably be free.
Because of my cerebral palsy, my muscles are always tight, so I can’t use a speculum for a routine pelvic exam. Instead, I use a blind swab, which is basically just using a long cotton swab to collect samples without a speculum. It is a very easy procedure! So my aide and I called the local Planned Parenthood office and asked if they could do a pap smear without the speculum. The rude woman said, “No, it’s not possible.” Click.
So I emailed my gynecologist and asked how much just the pap smear and exam would cost by itself. She quoted it at $175. At this point I was so fed up, I just wanted to get it over with.`
However, the day before my appointment with my gynecologist, my aide and I called to double-check how much the pap and exam would cost, as the office requires that you bring cash if your insurance isn’t billed. The receptionist couldn’t give me an exact cost, and kept saying it would depend on what my doctor “would want to test for.” What?! I needed a full workup. She did finally quote me the $315 for everything – the exam, blood and urine tests.
We called Planned Parenthood again and we actually got a competent employee who was willing to talk through all of the costs and procedures with us. Peeing in a cup is difficult for me so I usually just pee at home and bring the sample with me to the doctor’s office. Planned Parenthood doesn’t allow samples to be brought in because they’re worried patients could use samples from other people just to get medication or a clean bill of health. I understand this, but it’s virtually impossible for me to pee in public restrooms– let alone with someone holding a cup under me. Thankfully, the receptionist understood my situation and was going to try to accommodate my request. I also asked again if they could do a pap smear without a speculum and this time the receptionist said they would look into and get back to me by the next day instead of simply shutting me down. However, shortly thereafter, I would have my appointment with my ignorant gynecologist.
When Planned Parenthood called back, they said I could bring my urine sample with me. Yay! But unfortunately, they couldn’t do a pap smear without a speculum. Boo! So I said to just do the rest of the tests without the pelvic exam. Yet again, I needed to call my gynecologist to tell her I just needed the pap smear. She was extremely reluctant and cited my results from the previous year as proof that I didn’t need another test, specifically saying that I didn’t have HPV and that if I did, it would have shown up on my last test. My aide explained that I wanted to be absolutely sure I didn’t have HPV, and I like to get tested before every new relationship. I also asked if they could send the bill from my health insurance to an address other than my parents’ house, and she quickly said “No.” So I thought, “Guess I’m shelling out $175.”
I wanted to get everything done before I had a date on the weekend, where sex was a possibility. Unfortunately, my gynecologist nurse scheduled my appointment at the wrong time. Apparently she thought it would take an hour for my aide to pull down my pants, transfer me, have a five-second pap smear, and get dressed. So, I would have to make an appointment to get tested after my date.
I did manage to go to Planned Parenthood before my date. It was actually a very good experience. The employee was not freaked out by my disability and actually talked directly to me. Normally, people talk to my aide instead of me when first meeting me. Because I’m nonverbal, they think I can’t understand what they’re saying. I had a couple of questions unrelated to the STD tests and the employee was super accommodating in answering those questions. He took my blood and said they would call within one week if any results were positive. Unfortunately, when I asked yet again about the pap smear without a speculum, he checked with a clinician who said they could not. Overall, it was still a positive experience, and I will definitely go to Planned Parenthood in the future.
When I did go to my gynecologist, it was an interesting experience, to say the least. Me, my aide, my service dog and my gynecologist crammed ourselves into the office to talk. When I told her about my positive experience at Planned Parenthood, she asked me over and over if they pushed birth control on me, claiming that’s how they supposedly get their funding, so next time I should take some condoms and just give them to a friend, “because everybody likes free condoms. Well, the people that use them.” I use them, damnit! Why can’t she understand this?
When it was time to get my cervix swabbed, there were two cotton swabs. My gynecologist explained one was for the regular pap smear and one was for the HPV screening. I immediately flashed back to our previous conversation where she quoted my results from last year’s pap smear as the reason why I don’t have HPV. I didn’t have my letterboard (that I use to communicate) out at that moment and I wanted to relax, so I just let it go for the time being. But after I got home, I emailed her to ask why she had always only used one swab in the past. She replied that since I had never had an abnormal pap, she used those results to infer about my HPV status. I had called and asked about HPV specifically and she had said I didn’t have it before. So… that was basically just a guess.
Obviously, after all the nonsense between Planned Parenthood and my gynecologist, I did end up with a full STD workup, which is what I wanted. But I only got all of this done because I’m stubborn and don’t take “no” for an answer. My experience makes me worried for others though, who aren’t as persistent as me. Ultimately, getting tested should be as easy as getting a flu shot, but since society thinks people with disabilities don’t have sex, why would we need to get tested for STDs? I think if that attitude changed, Planned Parenthood could accommodate me more and my ignorant gynecologist wouldn’t be so flabbergasted and I wouldn’t have to twist her arm when I need STD tests done.
But now that gynecologist has retired, so I have spent a year trying to find a new one. I ended up emailing over 30 different gynecologists to see if ANY of them would do a blind swab – and none of them would do it. I even emailed the local cerebral palsy clinic and that gyno still could not do that blind swab. This infuriates me because the blind swab does not require extra equipment or training! It just requires someone that is open to doing it. So at the end of the day, it is simply the attitudes and close-mindedness of these doctors that is truly making my pap smear inaccessible.
I did finally find a person to do my pap smear. One of my friends suggested I connect with her midwife. She was reluctant at first, just because she hadn’t done a pap without a speculum, but after she did some research and I sent her a video, she was like, oh, I can do that!
Be your own advocate and be open to non-traditional approaches. My story is not uncommon and that needs to change! So many people with disabilities go without the sexual health care they need simply because it’s inaccessible. For example, there is a much higher rate of breast cancer among people with disabilities because mammograms are not made to accommodate people with disabilities. Accessible equipment needs to be available and doctors should be trained in alternative methods of practice in order to make things more accessible to their disabled patients.
I know being the squeaky wheel and advocating for yourself is tiring, but when it comes to your health, keep pushing. You have the right to proper sexual health care.