Friday, December 1, 2017

Act Your Age...Doctor's Orders

Hannah had a doctor's appointment the other day. It was just an annual check-up; nothing special. About the only thing of note is that it was three or four years overdue. I think there's a maximum number of medical appointments a body can handle. After years of daily doctor, specialist, hospital, therapist and agency appointments (not to mention my years working in the hospital), I hit my limit more than a decade ago. Therefore, short of my kids missing a limb, I avoid making appointments like the plague.

I got a call from the doctor's office about a month ago. They were apologetic, but they said they had to see Hannah because they've been writing prescriptions for her monthly medical supplies, and technically (or by law, or whatever) they're supposed to see her once per year in order to do that...not every five years. "FINE," I sighed, "I'll bring her in."

I like the doctor well enough. It's just the hassle of hefting both Hannah and her wheelchair into the car...and hefting them back out again, then back in again, then back out again - that encourages me to look for excuses to delay making appointments. There's also dealing with her self-abusive behaviors while we wait for the good doctor (and there's always a wait), because she's uncomfortable (or stressed or bored or irritated or overwhelmed - who knows; probably all of the above). That gets old fast. As do the strange looks we get when she's doing it.

There's also a rather irrational irritation that gets me every time. I totally understand the push to treat people with disabilities with dignity and respect. That's a no-brainer. It's how dignity and respect are interpreted that get to me. And I recognize I'm the one being unreasonable here, so I certainly don't call people out or show my irritation, but I can't seem to help it. Here's the thing. Hannah is 22. She's the size of an seven or eight-year-old. Her hands and feet are tiny; she wears an infant size 8 shoe. She clearly doesn't look 22. She certainly doesn't act it, either. While I don't think there's any way to estimate her cognitive age with 100% accuracy, after a lifetime of observation, I estimate it to be at the level of a six to nine-month-old.

I realize, of course, that people passing her in the hallway of a doctor's office, lab techs and random nurses assigned to gathering her vital signs are not going to know this. It's safer to assume she understands small talk and social niceties and that she would appreciate being talked to like you would talk to a 22-year-old (or even a 7 or 8-year-old) than to guess that all of that is beyond her capability. I suppose asking first how much she can understand before interacting with her would be looked at like asking a woman if she's pregnant. You just don't do it.

I don't know why, but for some reason, this grates on me. Maybe it's the reminder of just how delayed (or nearly non-existent) her development is. I think, though, it's the socially awkward feeling I'm left with, thinking the whole time someone is talking to her, "You realize she can't answer you, right? You know she won't do do what you've just requested, right? You know she can't understand your warning that you're going to lift her shirt and listen to her heart and lungs, don't you? You get that if she's going to be startled, embarrassed or made otherwise uncomfortable by her shirt being lifted (which she won't) that saying those words means nothing to her, right?" I never say any of this out loud, of course. I just smile uncomfortably and "answer for her" when Hannah's lack of responses just gets too awkward.

I thought a lot about this subject when the state was trying to get Hannah a job. Don't even get me started on that ridiculousness; if you're up for a good laugh, you can read a bit about it in my post, Your Daughter Should Be A Marijuana Farmer. The thing is, if you want to treat a person with cognitive delay with respect, is it really respectful to treat him/her according to his/her chronological age? I don't think so. If an adult is mentally an infant, I think it's more respectful to treat him/her as an infant. To treat him/her as an adult is essentially saying, "I'm going to interact with you in a way that would be appropriate for the age you should be acting."

The persistent push to treat someone always by their chronological age isn't just limited to cognitive ability. During yesterday's appointment the doctor looked over the information on his computer screen and said, "Soooo...[sigh]...Hannah is due for a pap smear..."

I looked over at Hannah...sitting on the her diapers...playing with her rattle. You're kidding me, right? "Uh-huh..."

"As you know," he explained further, "the pap tests for cervical cancer, which is actually sexually transmitted."

Seriously. You're pulling my leg, right? "Uh-huh..."

"Which...she's not very likely to get..."

Gee, ya THINK?! "Right."

"Actually, I see here she got the immunization, too, which further reduces her chances..."

To LESS than zero; we're dealing in the NEGATIVE numbers now. "Right."

"And...I don't even know if they make a speculum that small..."

Oh. My. God. This is ridiculous. He's actually considering this lunacy! "Look, quite frankly, the only way Hannah is going to get cervical cancer is if she's raped, and if that's the case, concern over her dying from cervical cancer is going to be really, REALLY low on my list of things to worry about. Okay? We're not going to do a pap test."

I don't think I've ever seen a doctor shudder and pale before. I nearly got whiplash watching him spin uncomfortably back to his computer screen, presumably to type in a decisive "No" on the line that said "pap smear".

Do I HAVE to do this again next year? Maybe if I start thinking now I can come up with a good excuse to miss another appointment...


  1. Wow… I cannot conceive of any doctor being so stupid as to perform a pap smear on a child in diapers!

    1. Thanks so much for taking the time to read my post, Denise, and for sharing your thoughts. I don't think it's an intelligence thing - this man is also the primary physician for my husband, my oldest daughter and me. He has proven himself to be quite competent and skilled in his craft. I think it's just a matter of being blinded by the "should be". His patient is 22, so this is the care he SHOULD BE providing. This person is 22, so this is how we SHOULD BE talking to her and this is what she SHOULD BE interested in. I think it speaks to society's desperate attempts to treat individuals with disabilities the same way they would treat anyone (because that's the RIGHT, politically correct thing to do, right?), when maybe it would be better to accept the individual's differences/disabilities and treat them accordingly. That's easy for me to say, when I live with her day in and day out, right? When I happen upon another person with developmental disabilities I am just as clueless as anyone else about what is appropriate for that person. Sorry to babble on. :) Thanks again for your comments, take care, and have yourself a safe, healthy and festive holiday season! :) ~Stephanie

  2. Hi Stephanie, I am in awe of you, really. Thank you for the remind about "shoulds" & "shouldnts" & trying to be more mindful & thoughtful about the world, and people, around us. Many times comments & behaviors, like judgment & rudeness, can come from a negative, dark place but many times is just a thoughtlessness. I was happy to see that he didnt try & force the issue, scare you into fearing not letting him do the test might affect any aid or assistance you might get for her. Hopefully was an experience that brought an important 'aha' moment for him that, as a doctor, will help a future patient in some way. Thank you also for the mom is a nurse & the card made me smile as I remembered the "perfect attendance award" my siblings & I usually got every year at the end of the school year! All the best of everything to you & your loved ones in the new year.

    1. Thank you very much, Tia, for taking the time to read my post and for sharing your thoughts. Our society's aim toward political correctness is very well meaning; I think it just sometimes leads to unintended consequences. I know it sounds contradictory, but I don't BLAME people for their reactions to a person (like Hannah) that they likely have no reference to in their own lives; I just get irritated by them. I think we've painted ourselves into a politically correct corner, so to speak. We put a "harmful" label on various words, and the list of "bad words" is ever growing and changing, so first it was hurtful to say "retarded", but then "handicapped" was too harsh, so it was supposed to be "differently-abled" and so forth. It gets so people are paralyzed to ask a question so they'll be better informed, for fear of being looked at as some sort of discriminating bigot. It certainly isn't just the special needs community this happens in - I readily admit that (as a middle-aged white woman) I have questions about folks of different colors and ethnic backgrounds that I wouldn't dream of asking, for fear of being called a racist for simply asking them (out of nothing more than curiosity about things that I don't happen to experience in my own life). While I totally get that we need to aspire toward acceptance and respect, we also need to calm down with the hair-trigger response to specific words - regardless of how they are intended. For instance, when Hannah was an infant and had just been diagnosed, my husband was in a car with his aunt and high school-aged cousin. His cousin said, "So...when Hannah gets older, is she gonna be retarded or, like, WICKED retarded?" (This was said in northern NH, so it's best said with a strong Yankee accent). Daniel's aunt was MORTIFIED and began to yell at her son for his rude and insensitive question. Daniel said, "No, no. It's ok." He turned back to his cousin and replied, "Wicked retarded." His cousin wasn't asking the question out of malice; he was trying to understand a reference point. I would take a completely non-P.C. question like that ANY day over stares, obvious looks in the opposite direction, or nervous, awkward "conversation" that is completely inappropriate [for Hannah's mental age], but thought of as "acceptable", because it treats her like any other [adult] person. I'll stop rambling now, but thank you, again, for sharing your thoughts! Take care and have yourself a healthy, safe and festive holiday season! :) ~Stephanie

  3. I've taught students like your daughter most of my career. I don't find it awkward that they can't/don't respond when I'm having those one-sided conversations. I'd rather have them in case they do understand and can't show it in any way that we can understand. To me, the (potential) awkwardness is worth their dignity. And besides, any awkwardness is our problem, not theirs, anyway.

    Regarding the testing. Sadly, I've known too many cases where that was the only way that we found out one of our students *had* been raped. The abuse statistics are frightening for this population, and increase for those with multiple challenges/marginalizations. And the sad fact is that 80% of abusers are caregivers. Never being unsupervised doesn't protect her. I dearly wish it did.
    No, I strongly believe all of our teen and adult girls should get regular testing. It's one of the only tools we have.

    I appreciate you letting me share my opinions as a teacher and PWD myself. Happy Holidays!

    1. Thanks so much for taking the time to read my post and for sharing your thoughts! You bring up excellent points that I have thought about. As a molestation/rape survivor, the [increased] risk of abuse to those with disabilities - specifically those with cognitive disabilities - is not lost on me. It is one of the reasons I would never consider placing Hannah in a nursing facility - she can't speak for herself, so I would have no way of knowing about any problem until it would be too late. About the only thing that makes me more nervous is her sister's situation. She's 25 with high functioning autism and mild to moderate developmental delay (emotionally and cognitively more like a 12-year-old). She also cannot live independently, so she's home with us, too, but she is able to go out and about into the community (walks to the local store and takes a public transit bus to the therapeutic horseback riding center where she rides). We already had an incident in high school where a student was trying to take advantage of her (we ultimately had to get a restraining order), and I worry on a daily basis - every time she steps foot out the door. I'm always grappling with that fine balance between safety and allowing her to live as independently as possible. Thanks again for sharing, and thank you VERY much for your service to the special needs community! Take care and have yourself a healthy, safe and festive final week of the year! :) ~Stephanie