Ever since that training, I’ve become very interested in how various indigenous cultures view illness and healing, mainly as a way to understand our own culture’s attitudes toward sickness and health. So when I ran across the following in Robert Murphy’s The Body Silent, I began to think about the ways in which it illuminates the autism discourse:

“Among the Mundurucu, and many other South American Indian societies, the most serious threats to health are believed to arise from violations of the social order, specifically from the activities of malevolent and alienated individuals, people who, say the Mundurucu, ‘are angry at everybody.’ Most diseases, the Mundurucu believe, are caused by evil shamans who manufacture supernaturally charged objects, called caushi, that enter a person’s body and cause illness…

Just like the invisible malignant objects he manufactures, the Mundurucu sorcerer is thought to operate covertly, maintaining his everyday demeanor and mask of sociability while spreading disease and suffering. Killing the accused restores the body politic, and at the same time purges the populace’s fears, envies, and secret hostilities, which have been projected onto his person. The good shaman brings back life and normal function to the body and community; the evil shaman creates death and disorder — which are really the same thing.” (Murphy, 30-32)

One of the images that struck me right away was that of an outside force entering the body and rendering the individual ill. In the mainstream discourse, autism is sometimes imagined to be the result of a foreign substance being introduced into the body by way of vaccines, environmental toxins, or food additives. At other times, as in the infamous Ransom Notes campaign, autism becomes the outside invader itself.

In both cases, the seemingly inevitable corollary is that autism is a condition separate from the person. If the autism were removed, the narrative goes, the formerly autistic person would be well, normal, and whole. Thus, despite the vast diversity of the autism spectrum, despite the dozens of possible genetic markers for autism, and despite the fact that autism is a complex neurological condition, most people speak of autism as though it were a single entity that could be safely excised.

But where our own culture diverges from the indigenous view is the degree to which the “cure” is focused wholly on changing the person, rather than the social context in which the person lives and breathes. In cure circles, there is very little talk about changing the disorder in society in order to heal the individual.

The only exception comes in the form of the vaccines-cause-autism contingent, whose members believe that keeping people from introducing vaccines into their children will stop the “autism epidemic.” Just as the Mundurucu view the sorcerer as a malevolent entity who operates “covertly, maintaining his everyday demeanor and mask of sociability while spreading disease and suffering,” many who believe that vaccines cause autism view the pharmaceutical companies, the vaccine manufacturers, and the federal government as co-conspirators in a plot to render the American public ill, all the while going about their business looking as respectable as can be.

Of course, the anti-vaccine contingent does not help anyone become better. In fact, they only introduce more illness into communities by lowering herd immunity through their anti-vaccination efforts. In trying to heal disorder, they only create more of it.

As for the rest? Those who believe that autism is caused by environmental agents, rather than by genetics, show little to no interest in stopping the alleged cause of the autism. If you believe that pesticides cause autism, shouldn’t you be working against the use of pesticides? If you believe that food additives cause autism, shouldn’t you be working against the use of food additives? And some people are. But far more people devote all of their attention to altering or curing the autistic person, despite the fact the autistic person, in this scenario, is simply the canary in the coal mine. It’s as though, instead of working on better conditions to keep miners from dying of the methane poisoning that killed the canary, everyone involved decided to re-engineer the human body to tolerate high levels of methane. In that kind of scenario, the human body becomes the source of the disorder, and no one need alter the larger environment.

I read a comment recently on another blog that spoke very directly to this idea. In writing of the necessity for a cure for autism, the commenter said:

“The world isn’t going to get any less bright, less loud, less crowded, or less dependent on the need to communicate in our children’s lifetimes no matter how much we may wish it; and no matter how wrong it is, funding for a generation of children needing lifetime assistance will not be forthcoming.”

I found this comment quite interesting, because it clarifies so succinctly the impact of social disorder on autistic people while eschewing the necessity for healing the disorder in the body politic. The society we live in is not only very bright, very loud, very crowded, and very biased toward verbal communication; it is also a society in which humane, compassionate, lifetime care for severely autistic people is nonexistent. The commenter’s solution is to find a cure. He has wholly given up on the idea of changing the world around him, and he puts the necessity for change squarely on the autistic individual.

I think it’s apparent to most of us who have reached mid-life that the world has become quite a bit more disordered than it was when we were children. I remember my father limiting our TV watching; these days, you can hardly go into a restaurant or a waiting room without a television on. I remember a world of books and LPs; these days, there are iPods, computers, and all manner of technology that keeps us bombarded by visual and auditory stimulation. I remember when you weren’t supposed to play your music too loudly, so as not to inconvenience other people; these days, I hear music blaring out of people’s homes and cars on a regular basis. I remember when you could actually read the credits after a movie because they went by slowly enough for the average human to parse; these days, the text on the screen flies by so quickly that you have to click the pause button just to read it. I remember when classrooms were orderly and quiet; these days, in far too many places, they are loud and chaotic.

All of these factors mean that those of us who flew under the radar 50 years ago could certainly never do so now. It’s not our autism that has changed. It’s the environment. And yet, very few people talk about the environment in any thorough-going way. Yes, there are special ed classrooms, and some autism-friendly movie events, but there is a huge difference between providing separate venues for autistic people and addressing the disorder in the larger society that renders us disabled. Clearly, not all the disabling features of autism can be solved by re-ordering the environment. As one autism mom said to me recently, no accommodations can keep the world from being one in which bees buzz, babies cry, and dogs run — all of which are very painful to her autistic son. But there is much in the environment that can be changed so as to render the world less aversive and disabling to autistic people.

Few people want to talk about that kind of change because, frankly, most people have the privilege of accepting society just as it is; and those who see the enormity of the problem feel powerless to change it. So, instead of the social order changing, it’s individuals who must change. From what I have experienced, putting this burden on the individual is a core feature of the mental health profession, which largely sees difficulties like depression and anxiety as personal problems rather than social ones. Very few therapists are willing to engage the question of the ways in which skyrocketing levels of depression and anxiety have to do with the cold, lonely, stressful, alienating nature of American society. Instead, the solution is almost always to talk it out and take a pill.

After many years in recovery as an abuse survivor, and now as a late-diagnosed autistic, I’ve come to realize that American culture thrives on this individual illness paradigm. Everything is a disorder in the individual. If you’re depressed because you’re disabled and feeling isolated, you have a mood disorder. I actually had my last therapist tell me so. I said to him something along the lines of, “Wait a minute. I’m dealing with a disability in mid-life, in a world that is set up to exclude me more often than not. How does that translate to a mood disorder? Aren’t I having a perfectly normal response to the gravity of the situation?” He just kept telling me that it was my problem.

In the final analysis, it’s the person diagnosed as “disordered” who ends up in the position of the Mundurucu sorcerer and becomes seen as the source of social disorder. Disabled children are considered a “drain” on the school system. Disabled adults are considered “a burden” on society. Autistic people are called unempathetic, rigid, black-and-white thinkers in a society in which most political discourse is inhuman, inflexible, and polarized. People with mental illness are objects of fear and derision. The list goes on and on, the prevailing mythology being that if all these people could simply be cured — or just plain disappear — normality would reign, fear would be banished, and all would be well in the body politic.

In the popular imagination, we disabled people end up not in the position of the victim of an evil sorcerer, but in the position of the evil sorcerer himself. In the minds of so many, to cure a disabled person — or to render the disabled person invisible — “restores the body politic, and at the same time purges the populace’s fears, envies, and secret hostilities, which have been projected onto his person.” The larger society becomes the good shaman, “who brings back life and normal function to the body and community.” The individuals labelled “ill” become the evil shaman, who “creates death and disorder.”

And yet, unsurprisingly, no one is healed. We simply end up creating a society of alienated individuals who, as the Mundurucu say, “are angry at everybody.”

© 2011 by Rachel Cohen-Rottenberg

His writing immediately spoke to me, in part because I’ve lived my life from the perspective of an anthropologist in a foreign culture, and in part because I recognize so many of my own experiences in his words. I am not very far into the book, but what I’ve read so far has sent my thinking in all kinds of new directions. I am being careful not to read too much at a time without articulating my thoughts on it; the book is so rich that I could lose track of all its implications if I didn’t pause to reflect.

Among the many passages that I’ve found powerful is the following, which describes the social role of a person who becomes ill:

“A person’s ordinary social roles — mother, father, lawyer, baker, student, and so forth — all become temporarily suspended when he or she falls ill. The individual becomes a ‘sick person,’ which relieves him or her of some or all of the ordinary obligations, depending on the severity of the illness.

The suspension of his other duties does not mean that the person playing the sick role has none at all. Quite the contrary; he is saddled with one big obligation: He must make every effort to get well again. In our own doctor-ridden culture, this means that he must seek medical advice; he must take his medicine and follow the doctor’s orders. This expectation mandates the proper role of the sick as one of passivity. The sick person is excused from work or school, household duties are suspended or at least limited, and connubial relations may be put on ice. But in return, he must devote full time to getting better.” (Murphy, 19)

The temporary suspension of numerous social roles in favor of a single imperative to “get well” is a trap that is well-known to many of us. Sometimes, this suspension of other obligations is necessary and welcome. For instance, when I had surgery to remove a degenerative disk in my neck a few years ago, I spent several weeks recovering my strength before I was able to get back to “normal.” And I well remember the feeling that my only role was to heal. At the time, I felt great comfort in knowing that others would take care of business while I recovered.

But the situation becomes much more complicated and troubling when a person moves beyond a short-term illness into a chronic condition. A couple of years ago, I went through a particularly low period with being autistic. During my 50 years of ignorance about my condition, I had pushed myself unmercifully — physically, psychologically, and emotionally — to the point of burnout. At the same time, I had been prescribed benzodiazepines, medication that was wreaking complete havoc with my sensory and emotional life. For awhile, I needed assistance with basic tasks, such as food shopping, housecleaning, and cooking. It was painfully difficult to ask for this help, and my self-esteem suffered significantly.

Two years later, I take much better care of myself. I have adapted to my disability, I have gotten off the benzodiazepines, and I have healed from the burnout. As a result, I no longer need such assistance. But the legacy of having once required it has cast a pall over my life that I have never completely dispelled.

Until now, I’d never known why. I’m beginning to understand, though.

With a condition such as autism, Down Syndrome, or multiple sclerosis, there is no “getting well” in the conventional sense. There can be therapies, accommodations, and the amelioration of certain symptoms, but there is no pill, no surgery, and no treatment that will remove the condition and render the person “normal.” Having any of these conditions, therefore, automatically puts one into the category of “sick” people (think “autism epidemic”), with a concomitant obligation to “get well.” But if you have a condition from which you can not “get well” according to the standards of the larger culture, you are completely unable to fulfill the one social imperative that the world gives you. And if you fail at that one obligation, then the quality of all the other social roles that you might have — father, mother, husband, wife, friend — immediately becomes suspect.

Thus, you end up with the widely held belief that the partners of disabled people are heroic for sticking around, and that they do so only out of pity, as though disabled people are not full and equal participants in the process of their own lives. And you get a great deal of talk about the numerous (and very real) challenges that the parents of disabled children face, to the exclusion of talk about the numerous (and very real) delights that such parents find in their disabled children.

You get T-shirts, mugs, and tote bags that say, “I love someone with autism.” You don’t get T-shirts, mugs, and tote bags that say, “Someone with autism loves me.” I’ve considered making up some items with that message on them, but I think it would only depress me to find out how few I would sell.

Of course, defining us as “sick” generates a great deal of money, energy, and emotion in the race for a “cure.” After all, if our one imperative is to “get well,” the culture is going to make damned sure that we do it. And, inevitably, the only way to get other people to join the search for a cure is to generate FUDD (fear, uncertainty, doubt, and dread) about living with a disability. In the autism world, Autism Speaks is masterful at this form of gamesmanship, which has the net effect of making the parents of autistic children absolutely terrified of what might happen to their children without all the latest treatments, without 40-60 hours per week of expensive therapy, and without that elusive “cure.”

The fact that there are millions of disabled adults who have created happy and fulfilling lives, without full-time treatment and without a cure, seems to matter not at all. We are ignored, and why? We have broken the obligation of being a “sick” person. We have not remained passive. We have not lived our lives in a quest to “get well.” We have lived our lives in a quest to live well as the people we are.

As a result, we find ourselves in the vortex of a great deal of distortion for wanting to simply be at peace with ourselves and carve out a meaningful life. It’s as though, having given up our “patient” status, we’ve committed some sort of cardinal sin. Thus, you get autistic self-advocates, who do not want to be cured, being told that we’re faux autistics. If we reject the role of the “sick” person, with the one overriding obligation to get better, it’s as though we short-circuit the cultural wiring. The response is often along the lines of, “If you refuse to see your autistic mind and body as sick, and you refuse to accept the social role that having such a mind and body entails, then you must not be autistic at all.”

That logic, of course, is not logic at all, which is an indication of how deeply threatening stepping out of our assigned role feels to other people. And the illogic means that we face psychological warfare of the worst kind: we find ourselves verbally stripped of the very condition that is the source of our struggles, our triumphs, our sensitivity, our discipline, and our awareness. In those moments, it’s as though our entire life histories have been erased.

Were we not threatening a deeply held cultural value, the response to us might be somewhat more productive, along the lines of, “I give you a lot of credit for your strength and your accomplishments, and I celebrate that you have a happy and fulfilling life. But please be aware that my adult autistic son, who tries to self-injure all day long, who bloodies himself on a daily basis, who gives himself concussions when he’s stressed, is in a state of irremediable pain that no accommodation can fix. Do you understand why I want to move heaven and earth to find a cure? And, until that help arrives, can you give me some insight as to how I might understand what is happening to him?”

That would be a conversation worth having. Unfortunately, I’ve never seen it actually happen.

In the absence of that conversation, I understand the wholesale rejection of words like “disease,” “disorder,” and “sickness” in the autistic community. I’ve gone to great lengths to distance myself from words like those, and I’ve always felt a great deal of discomfort about it, too. After all, what is so shameful about having a disease, or a disorder, or a sickness? Isn’t rejecting those words just playing into the hands of those who see disability as the worst possible thing that could happen? Don’t we need to reclaim those words and empty them of all of their dehumanizing connotations?

I think we do. But it’s difficult to do so when being labelled diseased or disordered puts you into the trap of having only one social role, and it’s a role you can’t fulfill. Under those circumstances, it’s entirely understandable that the response would be to reject the label altogether.

As I sit here thinking about all of these issues, I’m reminded of someone I never met, but about whom I know a great deal: my husband’s late wife, Karolka, who died of ALS ten years ago, at the age of 55. One of the most memorable things that Bob has ever told me about her has to do with the whole issue of disease and cure.

Even before the diagnosis of ALS was confirmed, Bob and Karolka sought out all kinds medical interventions to try and heal her — or to at least slow down the progression of the condition. And on a regular basis, they would hear from a friend or community member with another great idea for them to try. At a certain point, Karolka decided that it was time to stop chasing a cure, and to start accepting and living her life. Even after she’d made that decision, people would periodically show up with new ideas, but she had moved on, and when she did, she found a great deal of joy.

She never referred to ALS as “my disease.” She always referred to it as “my condition.” And lest you think that she was engaging in feel-good, New Age, mamby-pamby, politically correct nonsense, please allow me to disabuse you of that notion. She had absolutely no time for bullshit of any kind, and the last thing on her mind was a desire to fulfill someone else’s idea of how to talk about her life. But in speaking about ALS as a condition, rather than as a disease, she gave herself a great gift: She made herself an active participant in her process of living and dying, rather than a passive victim of an enemy beyond her control. And she released herself from the obligation of having to “get well,” when getting well was out of the question.

I’m not saying that every disabled person has to see himself or herself the same way. And I’m certainly not saying that it’s not okay to want a cure for one’s condition — although there are a great many troubling consequences to having a cure in a culture in which our main social obligation would be to avail ourselves of it.

What I’m arguing against is the whole idea of the obligation altogether. Far too many people will never have typical neurologies, typical bodies, typical minds, or typical ways of being. Giving disabled people an obligation we can’t fulfill means that we become people of less than equal worth. And it also means that we have very little support to fulfill a number of other roles — such as mother, father, husband, wife, son, daughter, friend, neighbor, and community member — that we want and need, just as everyone else does. The overriding quest for a cure means that an organization like Autism Speaks spends most of its budget on research, and only 4% on services for autistic people living in the here and now. What is this “autism advocacy” organization advocating for, anyway? It is advocating for us to assume one role, and one role only — that of a patient, passively waiting to get better. It is not advocating for us to fulfill our birthright — to participate fully in all that the world offers to typically able-bodied people.

A few years back, after I received my Asperger’s diagnosis, I told a friend of mine who lives in Jerusalem, and who himself lives with a chronic disability. His response was something along the lines of “My sister, I will pray to Our Creator to heal you.” I was rather aghast at his response, as loving and as well-intentioned as it was, but I couldn’t quite articulate why. I wrote something back to the effect of “Please don’t pray for my healing, but for my ability to manage my life with strength and dignity.”

I never head from him on the subject again. But if I had it to do over, I’d expand on my request for his prayers and say, “Please, don’t pray for my healing. Please pray for my strength. Please pray for my dignity. Please pray that I have supportive friends and a loving community. Please pray that I continue to find meaningful work. Please pray that the world stops seeing me as broken. Please pray that others don’t react to me with fear and prejudice. Please pray that I live a long and happy life.”

Perhaps I’ll still ask for those prayers.

© 2011 by Rachel Cohen-Rottenberg

“Death with Dignity” Bill Promises Only Indignity

The least costly treatment for any illness is lethal medication. –Walter Dellinger

When I was younger, I fully supported physician-assisted suicide for terminally ill people. I believed that people who are dying should be able to decide when and how the end arrives, and that physicians should be able to make the process as painless and as dignified as possible.

After all, isn’t the decision to end one’s life a personal one? Doesn’t the right of self-determination dictate that one should have control over deciding the manner of one’s death?

If physician-assisted suicide had no consequences beyond the life of the person in question, the answer to both questions would be a resounding “Yes.” But living in society means that when a decision has a serious, negative impact upon the lives of others, we must limit a person’s ability to carry it out.

And so, as I reflect upon the consequences of legalizing physician-assisted suicide, I now find myself against it. The so-called “Death with Dignity” bill before the Vermont Legislature, if passed into law, would have a profoundly negative impact upon the lives of people who do not wish to avail themselves of its provisions.

In reading the bill, I find myself deeply troubled by the criteria by which one is eligible to choose physician-assisted suicide. So long as the patient is fully competent to make an informed decision, the only requirements are that he or she “must have a terminal illness and must have fewer than six months left to live.” A terminal condition is defined as “an incurable and irreversible disease which would, within reasonable medical judgment, result in death within six months.”

Now, in almost all discussions that I have ever had in my lifetime about this issue, proponents of physician-assisted suicide have always argued that it is simply inhumane to allow a human being to live in a state of agony, and that physicians must provide a quick and painless way out. The possibility of unendurable pain has always formed the basis on which most people have argued for the right to die.

But the “Death with Dignity” bill says nothing about ending one’s physical pain. This omission may derive from the fact that most kinds of physical distress can now be managed by medication; except for certain kinds of neuropathy, it would be difficult to identify a condition that would cause untreatable levels of pain. If such is the case, why would someone with six months to live want to end his or her life prematurely?

The answer lies in the word “dignity.” The bill’s proponents argue that one should be able to maintain one’s dignity in the dying process. And what are considered the barriers to dignity? In reading the words of those who support physician-assisted suicide, I have learned the following: It is considered undignified to be unable to toilet oneself. It is considered undignified to wear a diaper. It is considered undignified to be in a wheelchair. It is considered undignified to be dependent on the care of others. To some, it is even considered undignified to no longer be able to participate in so-called “normal” activities.

By implication, the bill suggests that finding oneself in any of these conditions is a perfectly valid reason to commit suicide.

I find this kind of reasoning both dangerous and deeply insulting. There are many, many disabled people who are unable to toilet themselves, who wear adult diapers, who use wheelchairs, who depend upon the care of others, and who cannot participate in the activities that typically able-bodied people take for granted. And, as should be obvious to all thinking people, their lives have the same inherent dignity and meaning as the lives of other human beings.

That we equate dependency and the wrong undergarments with indignity is nothing more than our own cultural blindness. It is a choice that we make as a society, and nothing more.

To equate disability — especially severe disability — with indignity is dehumanizing. And to imply that any of these conditions is a reasonable basis upon which to commit suicide is to devalue the lives of people who live with these conditions for years, decades, and lifetimes.

This kind of devaluation is the greatest possible indignity that a disabled person can suffer, and it leads to all the many indignities with which disabled people so often must contend: isolation, exclusion, indifference, resource scarcity, financial insecurity, and vulnerability to abuse. Such indignities have nothing to do with a state of being disabled. They have everything to do with a society that devalues human beings who are not typically able-bodied.

In such a society, we must not avail people the option of ending their lives because they have internalized a fear and hatred of disability. Instead, we must love and support people through the process of dying, a process that comes to all of us.

After all, the decision to end one’s life does not take place in a vacuum. It takes place in a society that devalues those who are fragile, dependent, and vulnerable. If, as a society, we communicate that disability is undignified, that true worth derives from independence and “productivity,” and that we support suicide for those on the “wrong” side of the equation, how many people can bear up against that sort of thinking and make a truly independent, empowered decision at the end of life?

How many people, in the midst of the dying process, are even aware that the value system in play is arbitrary and prejudicial?

Certainly, there are provisions in the proposed bill that seek to ensure that people make decisions free of outside pressure, but realistically speaking, such safeguards provide no guarantees. A person in a weakened physical condition, dependent upon family members for housing, medicine, transportation, and care, is unlikely to tell a doctor that the people upon whom he or she depends are exerting pressure to end it all.

This kind of pressure can become magnified when money is at stake; family members have been known to feel that it is better to safeguard an inheritance than to spend it on expensive care.

Given that family members can feel this way, imagine what pressure the insurance companies would bring to bear upon a person when suicide is an option. When people who are non-ambulatory and dependent are considered to have lives without dignity, it is not unreasonable to assume that, in a healthcare economy of scarce resources, cost-benefit analyses will come out in favor of those considered “more deserving” — that is, those who have the potential to survive and to become “productive” once again.

Treatment will be denied people considered unworthy of it, but suicide will always be covered.

Would such decisions contribute to the dignity of anyone with a serious medical condition? Not by a long shot.

A number of Vermont disability and healthcare groups oppose physician-assisted suicide, including the Vermont Center for Independent Living, the Vermont Coalition for Disability Rights, the Vermont Medical Society, the Vermont State Nurses Association, the Vermont Organization of Nurse Leaders, and the Vermont Alliance for Ethical Healthcare. National organizations such as the American Medical Association (AMA), the Disability Rights Education and Defense Fund, and Not Dead Yet also oppose it.

Please add your voice to the chorus of opposition to the “Death with Dignity” bill. Let your legislators know that its provisions threaten to deny each of us the dignity that we deserve at the time of our greatest need for the compassion and respect of others.

We are all fragile. We are all vulnerable. And we all deserve to live in a society that respects and safeguards the inherent worth and dignity of every life.

© 2011 by Rachel Cohen-Rottenberg

February 15 audiology assessment: I walked to the audiology center, which is a mile or so from my house, and I was in a state of extreme resistance the entire way. I just didn’t want to go through the testing again. It wasn’t an intellectual resistance. In my head, I was interested in knowing how things would come out. The resistance was physical and instinctive. If I were a little kid, I probably would have said, “I just don’t wanna! Please? Can’t we go home?” But I’m an adult, so I kept on walking.

There are only two aspects of my audiology assessments that I like: seeing Beth Ann (my audiologist), and sitting in the sound-proof room she puts me in for the testing.

Beth Ann is a wonderful, friendly, quiet-spoken person who seems to talk at just the right tone and pace for me. She talks very little, too, which makes her very easy to be around. She says what’s needed, and then she gets down to business. She says that she likes when I come in for testing because she gets to use her normal voice; most of her patients are elderly people who are hard of hearing, and she tends to have to speak very loudly most of the time.

And the sound-proof booth? I want one. So. Very. Much.

At this particular appoinment, Beth Ann didn’t even bother trying to talk to me in her office. She did the pre- and post-assessment interviews in the sound-proof room. She figured I’d have an easier time of it. Nice person, eh? I really appreciated the gesture.

But God, did I hate the testing! My body was in a state of major tension the entire time. I just couldn’t wait to get out of there. I saw, once again, that verbal processing—any verbal processing—is very difficult, very tiring, and in some ways, very unnatural for me. According to the latest assessment, some of my scores have gone down, and one went up slightly. Here’s the breakdown of scores since my first assessment in July of 2010:

Frequency Patterns (pattern matching)
July, 2010: Right: 100%, Left: 100%
November, 2010: Right: 100%, Left: 100%
February, 2011: Right: 100%, Left: 100%

Compressed Speech (fast speech)
July, 2010: Right: 52%, Left: 48%
November, 2010: Right: 52%, Left: 48%
February, 2011: Right: 36%, Left: 36%

Speech in Noise
July, 2010: Right: 68%, Left: 80%
November, 2010: Right: 30%, Left: 20%
February, 2011: Right: 36%, Left: 40%

Dichotic Digits (integration of sound binaurally)
July, 2010: Right: 93%, Left: 90%
November, 2010: Right: 65%, Left: 28%
February, 2011: Right: 50%, Left: 25%

Except for my apparently ceaseless ability to do pattern matching, all of my scores are still in the Poor range. The good news is that they haven’t dropped as significantly as they did between July and November of last year, and I’m grateful for that. No one has ever suggested that my hearing will ever be normal, so I didn’t go in expecting miracles.

After the testing, Beth Ann asked whether I had any questions or concerns. My mind was kind of blank at that point, except for fact that I was cognizant of the huge enchilada in the room—the huge enchilada that is so large and so ever-present that I often can’t even register that it’s there.

So, I said, “Yes, I have a concern. How am I supposed to live my life this way?”

It wasn’t as pitiful as it sounds. I didn’t mean, “How am I supposed to get up in the morning?” I meant, “I don’t have a road map here. I do my best to understand what’s going on with my hearing. I take adaptive measures. I advocate for myself. But I feel like I’m doing it in a vacuum. If I were Deaf, I’d have a community to guide me. But I’m completely on my own here, and it’s very difficult.”

She was very kind, and she said that she’d talk with some people at Austine (the local school for the Deaf and Hard of Hearing) and see whether there might be any services or guidance for me. Later on, it occurred to me that there’s a crucial service that she can help me find: counseling from a Deaf practitioner. I need emotional support from someone who isn’t going to give me well-intentioned but useless advice. My last therapist told me that, of course, people wouldn’t approach me because, by blocking my ears, I was communicating that I didn’t want to communicate. I tried to explain to him that, um, no, I was blocking my ears to protect them, and that I wasn’t communicating a thing, except that I have a problem with my hearing. You can guess how that went. It was like saying, “You know, sometimes a cigar is just a cigar,” and being told I was in denial.

I don’t need to listen to that kind of thing anymore. In fact, what I need is a therapist who can help me deal with the exhausting, mind-numbing, crazy-making cluelessness implied by that kind of remark.

And I need someone with whom I can sit and text during appointments and not talk at all. I remember when I used to see my Deaf counselor at Voc Rehab. We’d sign a little and then write back and forth, or use the Ubi-Duo. After awhile, finding employment became secondary to just being in the same room with someone who wasn’t going to exhaust me. It was so peaceful. I came out feeling full instead of empty.

When I emailed Beth Ann about my idea of finding a Deaf therapist, she wrote me back and said, “Wow! I was just thinking the same thing!”

I’ll keep you posted about my progress in this area.

Today’s neurology appointment: Back in November, when my audiology scores plummeted, my audiologist strongly suggested that I see a neurologist “to get to the bottom of it.” I got an MRI right away, which showed nothing wrong. I also scheduled an appointment at Dartmouth-Hitchcock for February 2 (the first available one), but there was a blizzard that day and driving was out of the question. So I decided to see someone in town, figuring that even in a blizzard, I could walk.

The neurologist was lovely. I had gone expecting some high-powered, well-dressed doctor who would rush me mercilessly through the appointment. Instead, she was a very calm older woman dressed in a button-down shirt and corduroy pants that were balding in several spots, and she let me take my time. She did a bunch of testing and basically said, “I don’t see a thing wrong with you—except for the auditory and other sensory issues, that is.” My core muscle strength is good, my coordination is good, my balance is good, and nothing seems to be structurally wrong. She ordered some bloodwork to rule out autoimmune conditions that can lead to hearing loss, but she said that she expects that everything will come back normal.

Basically, she couldn’t explain the sudden drop, but after hearing about my father’s auditory processing and its extreme similarity to mine, she said that it’s probably all genetic. She gave me the option of going to an ENT clinic in Boston, but when I asked whether she thought it was actually worth it to shlep to Boston for more testing, she said, “I’m not sure. Let me think about that.”

I finally said to her, “You know, whatever is causing the drop-off, no one has ever breathed a word to me about it getting better. I think it’s good that we rule out really serious stuff that could be causing it, but if it’s something otherwise benign, that can’t be changed, what’s the point? I’ve accepted that my hearing is the way it is. I just need some support for dealing with it.”

She seemed to understand what I was talking about, and we agreed to have another appointment in a month to discuss things further. I got the bloodwork done (after having to flee the building for several minutes because they decided to test the alarm system while I was waiting), and then I came home even more convinced that my next order of business is not medical, but support-oriented.

I’ve got to get some support from a therapist for living with a disability and all the nonsense that the world throws at me about it—including all the ableist stuff I’ve still got to weed out of my own head. And I need some support for becoming more assertive and confident about the adaptive measures I need to take and the ways in which I need to advocate for them. I can’t continue to go this alone. I mean, actually, I can if I have to, and it’s good to know that I’m capable of doing so, but I really shouldn’t have to.

It’s all a work in progress. More later, as the work progresses.

© 2011 by Rachel Cohen-Rottenberg

But first, I need to vent.

Since moving up to Vermont, I’ve been seeing a new doctor. I went to her office on Wednesday because I had requested a referral to my OT, and the doctor wanted to check in each month about my OT visits. We also needed to do some “housekeeping” tasks, like figuring out when I had my last physical.

When I saw her last month, my chart did not have any information in it from my last doctor. I’d requested that the records be transferred about five months before, and it was surprising that they weren’t there. I later got a very apologetic message from the office manager, saying that the records had arrived long ago, but had not been placed into the folder with my new patient information.

Unfortunately, that mistake was a harbinger of things to come.

On Wednesday, I had a 3:00 PM appointment. I showed up about 10 minutes early to check in and give the receptionist my co-pay. I then sat in the waiting room, which was slowly filling with people, until 3:20, 3:30, 3:40…You see where this is going. At some point, a woman with two small children came in. The older boy was coughing constantly, and the younger one (who undoubtedly was carrying his older brother’s germs) was crawling around putting everything in his mouth that wasn’t tacked down, and touching every object he could find, including the walker of an elderly woman who was there to see the doctor. The mother of the two boys sat with a magazine held up to her face (literally) and paid very little attention to the children.

By about 3:45, I was long since overwhelmed and had begun to realize it. So, I went up to the receptionist and asked whether there was a quiet place in which I could wait. Luckily, a room had just opened up, so the nurse brought me in there and took my blood pressure, my pulse, and my temperature. When she was done, she said that the doctor would be there “in a few minutes.” I began to enjoy the solitude until I realized that it would be more than a few minutes, at which I point, I started to silently cry with frustration and anger. At 4:10, the doctor walked in, and without offering an apology or an explanation for the long wait, said: “So, you’re here for an osteopathy appointment?”

I just about spit. It was everything I could do to keep from rolling my eyes and snarling. Instead, I used my best humorless monotone voice to say, “No, I’m here because I’m seeing an OT and you said I needed to come in once a month.”

“Oh,” she said. “That’s right.” (Did I mention that she had the seven-page OT evaluation I’d brought in a month before?)

Then, we spent about ten minutes talking about health insurance, during which time she told me that I needed to call the insurance company and find out whether the referral had been approved. She suggested that I carve out about 45 minutes and put my phone on speaker while I got the run-around. Again, in my most humorless voice, I said, “No, I absolutely cannot do that.” She finally said she’d get someone from the office to call the insurance company.

Terrific. So, about scheduling that physical, I said. I couldn’t remember exactly when I’d had my physical last year, so I asked her to look it up on my chart. She said, “Well, I see you had a physical in 2007.”

“Okay,” I said slowly, “in what month did I have my physical in 2008?”

She said she’d have to figure that out. So then, and I am not kidding you, she began to remove the pages from my chart and spread them out onto the examination table. She still couldn’t find the pages from 2008, so she said, “I’ve got to go and get someone on the case about this.” She left the room. I know, I should have grabbed onto her ankles and kept her from leaving, but I figured she would be back in a minute or two. Why I made that assumption, given how swimmingly everything was going, I don’t know. Anyway, the minutes ticked by. First, I started crying again, and then I walked out into the corridor, just to make sure everyone hadn’t gone home. I couldn’t decide whether to just walk out of the office altogether. I probably should have.

Finally, after ten minutes, she came back and told me that I’d had my last physical in June of 2008. Halle-freakin’-luyah.

Then, she gave me some new prescriptions for my medications. Did she ask me anything about my visit to the OT? Anything at all? Nope. And that was the reason for the whole visit. I could have gotten my prescriptions called in and found out the date of my last physical over the phone.

I drove home crying in utter frustration.

So what have I learned about my Asperger’s from this little disaster?

1. As the saga in the doctor’s office wore on, I could see a meltdown on the horizon, and I steered myself away from it. Nothing would have been gained by it, and I wasn’t about to lose my dignity in front of everyone. However, steering clear of the meltdown was so exhausting that it left me without a clear sense of how to express my frustration and my needs in a constructive way. Instead, it took a huge effort just to ask the simplest questions, and by the time we were done, I could hardly put a sentence together.

2. I don’t do well when my expectations are thwarted. I generally expect some wait at a doctor’s office, but I had not imagined a 70-minute wait for what should have been a 15-minute appointment. That was more out-of-whackedness than I was prepared for.

3. I don’t do well when people are very late after I’ve done everything I can to show up on time. I’ve gotten more flexible about some lateness, but over an hour is really over the top.

4. I don’t do well when people don’t apologize. A simple, “So sorry about the long wait, but we’ve had a series of mishaps today” would have sufficed. But then again, I’m an Aspie and don’t understand social graces. I guess I’ll have to work a little harder on that.

5. I can’t sit in a crowded waiting room for very long.

After telling the story to my husband, he said, “Look, you’re dealing with a disability here, and they need to make accommodations for you. Otherwise, you can’t go to that doctor’s office again. If you had a mobility problem, they’d make allowances, so what’s the difference?” (A smart man, my husband.)

So we’re going to write a letter to the doctor’s office, making it clear that my AS and SPD make certain things very difficult. We want to be able to call before coming in, so that if they’re running late, we can wait at home, rather than in a crowded waiting room. If they can’t accommodate us, we’ll find someone who can.

I realize that what I need most in these situations is an advocate, rather in the same way that an Aspie kid in school needs an aide. So my husband will go with me to future appointments. He won’t be overwhelmed, and he’ll have enough clarity of thought to express what I can’t express while I’m just trying to process what’s going on.

My next appointment isn’t until June, so we have some time to continue thinking it over. I’m not going to accept that what happened is so common that I should let it go. I know it happens a lot, but that doesn’t mean I shouldn’t protest it and advocate for what I need. Nothing will change otherwise. Nothing ever changes without people making themselves heard.

© 2009 by Rachel Cohen-Rottenberg