Something odd just happened to me.
I have anxiety around the phone. From talking to other people I know, it seems like this isn’t rare. Mine’s gotten worse recently, like a lot of my other anxieties. I *can* make phone calls, and there are kids of phone calls that are easier for me to make than others. For instance, anything spontaneous is easier than anything that I know in advance I have to do. I can call person A to be social for ten minutes, but it’ll take me hours to work up to checking in with person B to confirm that they’re coming to an event, and even when my anxiety problems weren’t bad, it would take me days to work up to calling someone I didn’t know to interview them cold for an article. Once I’m on the phone, I feel fine. I’m charming, I’m funny, I’m articulate. I *like* talking to people, even people I don’t know. The anxiety is around the act of calling itself. I don’t know why. It parallels the anxiety I’ve had in the past year or so around leaving the house. I like being around people and crowds once I’m out, but the act of leaving — and the act of calling — are a barrier for me. Sometimes it’s a barrier like a membrane that I can push through with just a little bit of teeth-gritting and concentration, and sometimes is a big solid wall. There are people I have no or little anxiety around calling, but also places and people I have increased anxiety around calling – for instance, the doctor.
After my medical problems this summer, I’ve had a lot of problems with anxiety and the doctor’s office. My blood pressure goes up to really scary levels when I go in. I have anxiety attacks. My heart rate accelerates so that when I’m resting it’s as high as it should be when I’m doing arobic exercise. All my terror over possibly having multiple sclerosis, I’ve mapped onto the medical facilities themselves.
This anxiety has gotten better in some ways — if I go in to see a familiar doctor, for instance, my blood pressure won’t skyrocket — but it’s still present.
Anyway, one of the byproducts of this is that I don’t call the medical office. My [male] spouse does. If we leave it to me to call, then I will find ways to avoid it or to forget, or I will have insomnia before I have to call (and my mood problems tend to be complicated by lack of sleep), or I just won’t call. And then I miss appointments. No one wants me to miss appointments.
This is one of the things we do in the distribution of labor in our marriage. If I were talking from a feminist standpoint, which I generally do, I would say that my spouse compensates for me in certain ways and I compensate for him in others. If I have anxiety around the doctor’s office, then he calls. If I suck at maintenance tasks because my head is always on global stuff, then he focuses on maintenance tasks like grocery shopping and getting us to appointments. If he can’t do time management for big projects or know how to do the emotional work of maintaining the network of our family and friends, then I do that. And so on.
If I were to talk about this from a disability rights perspective, which I generally don’t, I would say that my social anxiety causes me certain problems which I anticipate and compensate for by asking my spouse to be my caretaker in certain capacities. (I don’t know if I’m using the right terminology here… when I say a disability rights perspective, I mean placing my status as someone with anxiety problems in the foreground.)
Unfortunately, due to a cock up a couple weeks ago, despite the fact that I had my spouse calling, I *did* miss an appointment. We fucked up our records — mea culpa, except for both of us. I really don’t want to miss a second appointment despite the fact that I hate going in.
OK, now we get into fiddly stuff. Because I missed an appt, I’ve had my spouse call in to get a full list of all the times I’m booked to go in. In addition to all the real appointments, they gave us one time when I am actually, in fact, *not* booked to go in. Why? I don’t know. I assume someone just misread or misspoke. Anyway, we noted it down as a time when I had to go in — and that time was tihs morning. I was surprised that I had this appointment time because I didn’t know what it was for, but we assumed it was real.
Yesterday, I had the privilege of contracting strep throat, so we had to make an emergency appointment. We went in, I stopped at the desk to register for the appt, and asked her to confirm that I was coming in today as well. “I don’t see anything,” she said. “We have nothing in the books until January.” I said thanks –and because it had been odd that I’d had the appointment in the first place when I didn’t know what it was for, I started assuming that it had just been an error that anyone had told me about it in the first place.
Still, I wanted confirmation that I didn’t have an appointment and that the woman at the desk hadn’t been misreading my chart, so I asked my spouse to call this morning and make sure that I didn’t have an appointment. He learned that in fact there’s nothing for today, and that was that.
Only it wasn’t. After that, the scheduling people called back and asked to speak to me. A woman let me know on the phone that they usually released information to spouses about appointments, but they were no longer willing to release information to *my* spouse because of the kinds of questions he’d been asking, and I’d have to call myself. I explained why he’d been asking that question, the whole story about the phantom appointment — and she repeated her request that I only call about my appointments myself. “Okay?” she said. I, still strep-throated and half-asleep, said, “Um…” and tried to figure out how to say “No, that’s not okay.” Before I could figure out what to say, she said, “Thank you,” and hung up.
I was very upset. Foremost — stupidly — was embarrassment. Embarrassment that we’d missed the appointment a couple weeks ago, embarrassment that we had this phantom appointment which I knew would look strange and irresponsible to the scheduling people, embarrassment that I was bothering them, embarrassment at being called. Secondly, I knew that their request would cause us problems around my anxiety, and that the likely result was that I would end up missing appointments and missing care.
I don’t want to miss appointments or care. I don’t want my relatively uncomplicated problems to become major ones. I don’t want my phobia of the medical system to negatively affect my health.
I called back and spoke to the woman’s coworker, and explained my problems with anxiety. I explained why I needed my spouse to be able to call. I explained that it was okay with me that he did. I asked her to note in my file that he could call for me. She was friendly, and helpful, and she placed the note in my file, and she talked to me as if I was a reasonable, intelligent, responsible person, which I appreciate.
I know why the schedulers were upset and concerned. They were worried I had a stalker. As a feminist, I approve. I approve of the fact they were paying enough attention to be worried. I approve of the fact that they decided to act on that concern rather than remaining passive. I approve of the fact that they tried to find a way to solve the problem. I greatly appreciate that both were well-intentioned and friendly and helpful and good people.
However, I don’t think the way that they tried to act on their fear was the best way that they could have done so. There are several issues for me here:
1) Once they’d spoken to me about the problem, they knew that the person who had been calling was — as claimed — my spouse. They knew I knew what was going on, and approved. The issue then became not one of protecting me from a stalker, since there clearly wasn’t one and everything that was happening was going on with my understanding and approval. When they found tihs out — which did not seem to surprise them — they did not adjust their plan accordingly. The idea of a possible stalker became more important than the actuality of no stalker.
2) When speaking to someone who is clearly uncomfortable, saying “thank you” and hanging up is a great conflict-avoidance strategy. I heartily approve of this strategy for many occasions. However, in this case, it was a problem because of what I was unable to articulate to them off the cuff. If I had not called back, I would not have been able to tell them why it was a problem. If my anxiety were worse, I would have been unable to call back (this situation got covered under my nonphobia of spontaneous phone calls).
3) They didn’t consider disability when they called. It was off their radar.
There could have been other strategies for dealing with this situation. For instance, the only way that the schedulers ever know that someone is who they claim is that the person provides their student ID number. If I didn’t have an identifiably female name, and my spouse an identifiably male voice, then they would never know he wasn’t me. If they were concerned about protecting my privacy, we could have set up a password for my spouse to confirm his identity, or set up another layer of privacy to make sure that he was someone authorized. They have the ability to mark in my file — they could mark a couple alternate questions that would assuage their fears.
And of course talking to me itself was something that they could have used to assuage their fears. If they had approached the situation with open questions, I might have been able to explain what was going on — and possibly propose alternatives. Now, these women work in a college health center, an environment whch is very aware of sexual violence, and one in which many of the patients — by virtue of being young — aren’t totally able to act as mature adults. Further, this is a situation in which the schedulers are experts and I am not. They have to deal with medical appointments every day. I understand why they approached me with a decision and a plan, and if circumstances had been slightly different, it would have been a good idea. Unfortunately, they didn’t really consider that I was an expert on my own life — instead, they operated based on their assumptions about my life (that I was able to call, for instance). Again, I understand why this happened and know it was well-intentioned, but it misfired in this case.
I am grateful to have read some writing on disability rights in the past couple years. Knowing something about how the medical system creates problems for people who need caretakers to act on their behalf allowed me to contextualize what was going on. It allowed me to see what was happening as a systemic problem instead of an individual one. Having read about the social creation of disability allowed me to think about my problem not as just a failing in myself, but to consider all the ways in which the system is set up to accomodate “normal” abilities and lacks, and to punish deviance from that norm, even when compensating for that deviance is relatively easy.
If I hadn’t had a sense of these critiques, I would have focused on my personal shame at being unable to handle these situations without my spouse’s help. I would have castigated myself for being weak, and tried to force myself to act as if I didn’t have the anxiety. I know what the result would have been — I did not go to a single medical appointment last year. I never even got as far as booking one, despite how severe my depression became. Having access to the consciousness raising of systemic critique of ablism allowed me to look at a system instead of my personal problems.
My problems are mild, but they do interfere with my life. They’d interfere more if I was unable to use the solutions that I’ve set up for myself to cirumvent my problems. I don’t really consider myself part of the disabled community — I don’t think I have a right to, when there are people like Kay with much more severe problems. I feel about it sort of like I feel about cliaming an LGBT identity — I’m bisexual because I am sexually attracted to women, but my few relationships (only three) have all been with men. I don’t want to be disrespectful to people who have to deal with real problems of oppression. At the same time, disowning a disabled identity is clearly an ego-defensive manuever; I don’t want to think of my problems as being real problems. I don’t want to admit that I am not “normal,” or abled, or able to do everything that I expect of myself.
When I got off the phone with the woman, I started crying. I’m still feverish from strep, and was tired, and I’m sure part of my upset was just being weakened. But I was still astonished at the force of my reaction. I didn’t know why I was so upset. Now I’m starting to realize — it was the shame of having problems, and the fear of having been for a moment helpess and vulnerable before someone else.
Commenters, I’m vulnerable here. I ask you to respect that.