9:16 am - 03/24/2014

MMMMonday! Sexual health care and disability.

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Today we have a guest post from Eva about sexual health care and disability!

"Just Let Me Fuck"

You would think getting an STD test would be easy. People usually go to their doctor or to Planned Parenthood and have a whole work up done. But for me, as a queer person with a physical disability who’s still on her parents’ health insurance, it’s a major clusterfuck.

When I realized I needed an STD test, I emailed my gynecologist, Blair, and asked for an appointment. Her response was Why????? as the thought of me having sex was apparently ridiculous to her. 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 a lesbian.” Untrue. (Well, the lesbian part is true.) I then tried to educate her about safer sex for lesbians-- you know, with condoms and gloves. She wrote 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 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 Blair, 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 when it was all said and done. Holy fuck. 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--which usually poses a problem with going to Planned Parenthood. So my aide and I called the local Planned Parenthood office and asked if they could do a pap smear without the speculum. The woman, obviously unaware of the possibility, said, “No, it’s not possible.” Click.*

So I emailed my gynecologist and asked how much just the pap smear 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. I said “Cool.”

However, the day before my appointment with my gynecologist, my aide and I called to double check how much everything would cost, as Blair’s 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 the fuck? I needed a full STD test. She did finally quote me the $315 for the exam, blood and urine tests, not the $175 for the exam and pap by itself.

We called Planned Parenthood again and we actually got a competent employee this time 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 to alter test results. 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 again asked 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 in less than 28 hours, 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. She was extremely reluctant and cited my results from the previous year-- using that as proof that I didn’t need another pap-- specifically saying that I didn’t have HPV and if I did it would have showed up on my last pap.* 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.”

Also, I wanted to get everything done before I had a date on the weekend where sex was a possibility. But unfortunately my gyno’s nurse scheduled my appointment at the wrong time. Apparently it takes an hour for my aide to pull down my pants, transfer me, have a five second pap smear, and get dressed. What the fuck? 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 he 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 speculum-less pap smear, he checked with a clinician who said they could not. However, it was 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. First we-- my aide, myself, my service dog and my gynecologist-- crammed into her office to talk. My first question was whether or not she could give me dental dams for free (she couldn’t). I then had a question (unrelated to sex) about yeast infections. She then told me that making out with someone new could cause a yeast infection because of new secretions. I don’t even know what that means or how that would happen! When I brought up safer sex (condoms, gloves, dental dams) she did agree that that would reduce the risk of yeast infections. But when I told her about my positive experience at Planned Parenthood, she asked me over and over if they pushed birth control on me. I said no. She explained that’s how they supposedly get their funding, so next time I should take some condoms and just give them to a friend. And then she said “Because everybody likes free condoms. Well, the people that use them.” I use them dammit! Why can’t she understand this?

When it was time to get my cervix swabbed, there were two q-tips. 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’m nonverbal and spell what I want to say on a letterboard that has the alphabet on it. I didn’t have my letterboard 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. WTF? I had called and asked about HPV specifically and she had said I didn’t have it before. So... that was basically a lie.

Obviously after all that bullshit, I did have a full STD work up done which is what I wanted. I’m stubborn though and don’t take “no” for an answer. My experience makes me worried for others 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 fuck why would we need to get tested for STDs? Apparently getting naked with someone and cumming is not fucking. 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.

A couple of notes:

*Pap smears without a speculum are definitely possible to do. It's not the preferred methodology, because it's difficult to get the proper sample - but it's an option for folks who have problems with speculums or who would otherwise have trouble getting screened. http://online.liebertpub.com/doi/abs/10.1089/jwh.2008.0795

*The author's statements about HPV screenings are based on their personal comfort level. Current U.S. Guidelines for HPV screening/pap smear are every 3 years for patients of average risk. http://www.cdc.gov/cancer/cervical/pdf/guidelines.pdf

Superstars, do you have experiences with disability and sexual health care that you'd like to share? Have you experienced similar frustrations? What work do you think providers need to do to make health care more accessible and respectful for patients with disabilities? Please feel free to discuss in comments!
neumeindil 24th-Mar-2014 06:54 pm (UTC)
I'm pissed off on the OP's behalf. :(

The worst case of sexual health neglect of the disabled I've heard of yet was from a friend whose mother is an OB nurse with a low cost clinic in her home town. Because of the nature of the clinic and its attachment to a hospital, they see a lot of patients from prisons and the local hospice/assisted living homes. One such patient was in her 20s but emotionally and mentally would never mature much beyond age 3-5. She was also nonverbal and paralyzed from the chest down. Her aids had suggested to her family that, simply because of her menstrual cycle's irregularity and the difficulty they sometimes had bathing and changing her, she should be evaluated for birth control use. Her parents categorically refused, lodged complaints against the aid that brought it up, etc.

So this appointment I heard about was the one in which doctors discovered not that the young woman had, as her aids suspected, a large ovarian cyst or some kind of hernia or mass in her abdomen, but a 5 mo. pregnancy. Whatever your definition of "informed consent" this patient was likely unable to give it, and also unable to physically fight off an attacker.

And we as a country allow these things to continue by refusing to acknowledge the massive shortcomings in our health care and assisted living systems.
nightengalesknd 25th-Mar-2014 01:57 am (UTC)
I'm aromantic and asexual as well as disabled, so I haven't had too many problems on my own, besides having to convince new health care providers that even though I'm on the younger side and have a uterus, I'm really not at risk for STIs or pregnancy.

I work with children and teens with developmental disabilities, and I am constantly reminded of how uncomfortable the medical field is about disability, especially developmental disability and sexuality. Some days the reminder comes from my patients and their families, and other times it comes from other health care practitioners. Not that sex ed around here is great for non-disabled students, students in special education programs get even less of it. I've encountered young teens who don't know where babies come from, let alone how to prevent creation of babies they may not want. I worry especially about training in following directions, without sufficient empowerment to learn to say "no."

And I encounter other pediatric providers who don't want to think about teens needing information about sexuality, let alone teens with disabilities, let alone gender and sexual minorities. Doctors may think about teens having sex, but not about the idea that their male patient may have or want a boyfriend, not a girlfriend. We don't provide direct sexual health care in my field, but we are often on the front lines of advising families about development and behavior, and if we ignore development and behavior related to sexuality, we are doing a disservice.

There is so much work that needs to be done I'm not even sure where to start. I think at both ends - the end of increasing comfort of HCPs about disability, including the idea that people with disabilities may have the same sexual health care needs as patients without, and the end of increasing HCP comfort about sexuality in general including ways to provide appropriate sexual health care to patients with disabilites.
terriqat 25th-Mar-2014 02:35 am (UTC)
Not in the same league as the OP, but at my very first GYN appointment I mentioned to my doc that I have moderate scoliosis. At which point she said "Then you should consider adoption because you will never be able to carry a pregnancy to term. Also, sex is likely to be very painful." You can all imagine what having that in my head did when I started becoming sexually active.
Other GYNs harped on the "pregnancy=bad news for you" theme- I was told I would never be able to deliver vaginally, or that I would be on bed rest for my entire pregnancy.

P.S. I had an incredibly easy pregnancy and delivered our daughter vaginally with no surgical interventions needed.

As to the previous comment, I also work with non-neurotypical children, although on the early childhood level. We deal with a lot of discomfort from parents about their children exploring their bodies, and about teaching them safe personal boundaries in a non-shaming way. I can only imagine how much worse that must get with an older population!
jeh_jeh 25th-Mar-2014 07:48 pm (UTC)
I'm physically disabled, too, and inserting a speculum hurts! It's good to know that it's possible to do a pap smear without, especially since I'm approaching the age of regular screening in the UK. (Off-topic, sorry, but does anyone have any experience with using muscle relaxants to make piv sex easier? I obviously can't just ask my (able-bodied) friends!)
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