Proper gynecological care for women with physical disabilities is a must; a necessity. Oftentimes, we are overlooked because of the misconception that we are not, and will never be, sexually active. We are so frequently viewed as medical objects that we are disassociated–we sometimes even do it to ourselves–from the reality that we are in fact sexual beings, and so much more. Some providers disassociate as well, and the proof is in their obvious lack of preparedness and readiness to perform something as routine as a pap smear on a patient with a disability.
The very first experience I ever had with a gynecologist turned out to be pretty damn traumatic. First of all, I went alone (big mistake). My second was the assumption that this doctor was knowledgeable about treating a young woman with spastic diplegia cerebral palsy.
WRONG.
Which is not to say that I placed all the blame on this doctor for my awful experience. I only placed some. I put the rest of the blame on me for not doing my due diligence, and for making assumptions I should not have made. How many women with CP walked into this doctor’s office? I didn’t know. How many women with CP had this doctor treated? I didn’t know that either.
“….Does a pap smear hurt?” was my first question as I lay in a plain blue gown, clothes stripped off, including my underwear. I already felt incredibly vulnerable, and the examination hadn’t even begun.
Laying back in the chair, my spastic legs began to act up. Spasticity is a type of high muscle tone, so the muscles in my legs–especially my hamstrings and quadriceps–are always tense, tight, and stiff. The spasticity emerges even more so when I am nervous. Who wouldn’t be nervous and feel awkward right before (and during) a pap smear of all things?!
“…A pap smear can be a little uncomfortable.” The doctor, short and bald, who sat hunched over on a stool wearing latex gloves, was a perfectly nice man. Yet proper medical care isn’t just about “being nice,” though it’s an important (and simplified) plus. “Lean back. I’m going to start.”
Spasticity feels like the muscles in your legs are clenching, or making a fist, if you will. During the clenching it’s painful, and courses through me all the way to my toes, and they would curl up and become rigid. Because of the high tone in the inside of my thighs, my knees locked together.
“I’m going to need you to open your legs,” he said, gently.
“Wait, wait a second,” I said, and the muscles in my neck began to strain as I looked down to my legs. A lot of the time I need the feedback, need to actually see what my legs are doing so I can adjust my position. “My legs are slipping off the stirrups.”
I was not able to hold my legs in the required position for the exam. The doctor asked the nurse who accompanied him to hold my legs apart. Now I wasn’t just vulnerable, but embarrassed–and more than anything else, I wished my mother was in the room with me. My legs–atrophied and thin, scarred–were shaking.
“Just focus on your breathing,” the nurse said, as she held my right leg.
Ten minutes. That’s all it took for the doctor to take off his gloves and say, “I don’t think I’ll be able to do the pap smear.” It felt like he was giving up on me, and I wanted to cry right in his exam room. For someone who doesn’t cry easily, that’s saying a whole lot.
I would learn later on about what should have been done that visit by going to another doctor, at another clinic (that specifically treated women with physical disabilities) a year later. For example, having the proper equipment like straps for the stirrups so that my legs stayed still and could perhaps relax for once; having my mom by my side to hold my hand; having an OBGYN who wasn’t just nice, but who understood and took her time and paused at the slightest impression that I was uncomfortable, who only continued when I gave her the OK. The difference was like night and day.
The Spastic Diplege 