In response to people who tell me that I’m too angry at the ways in which autistic and otherwise disabled people are treated, all I can say is: I’m not angry. I’m not having a personal feeling that I need to resolve. No. I’m outraged. I’m having an ethical response to a society that needs to right its wrongs. I’ve been outraged all my life at injustice and needless suffering, and I always will be. I consider it an ethical obligation of the highest order.
© 2011 by Rachel Cohen-Rottenberg
You would think that, at this point, disclosing my autism would be no big deal. After all, anyone can find out I’m autistic by doing a quick Google search on my name, reading my blog, or checking out the titles of my books.
But recently, the issue of disclosure has come up, and I’m finding myself approaching it rather differently than usual.
As many of you know, I’ve recently begun a master’s program in History and Culture at Union Institute and University. The program is entirely online, and for each course, my fellow students and I discuss our work through a discussion forum on the Union website. I’ve been talking about my interest in the autism and empathy issue, about different ways to approach the issue, and about the challenges of reading research papers that, for all of their attempts at neutrality, put autistic people in a painfully dehumanizing light. So I’m making no secret of my interests. But I haven’t yet mentioned the fact that I’m autistic — not even after a fellow classmate told me about her godson who is on the spectrum and her desire to find ways to help and support him. In the past, I’d have run right in and said, “I’m on the spectrum. You might get a lot out of reading my blog. And feel free to ask me any questions you want!” I did refer her to the Autism and Empathy site. And when I did, my professor looked at the site and my blog, and responded very enthusiastically to both. So I’m not hiding, by any means. I’m just not being as blazingly direct as usual.
At first, I thought that it was just disclosure fatigue. After all, I’ve been writing on the subject of autism and disability rights for nearly three years, and I’m feeling rather private right now. And then, of course, fear was rearing its ugly head — fear that if I disclosed my autism, my fellow students would think that I’m an unemotional, unempathetic robot more interested in objects than people. And yes, I could disabuse anyone of that notion by referring them to my blog, or to the Autism and Empathy site, or to my books, or to my husband, or to my daughter, or to my friends, or to my neighbors, or to my employers, or to pretty much anyone who has ever known me, but the stigma that attaches to autism is still there, and I know it. Usually, I am quite pleased to fight against that stigma, but in the context of my online courses, I’ve found myself strangely hesitant.
Disclosure fatigue and stigma have definitely entered into my holding back. But something else is in play. It’s the feeling that I just do not want to run in and disclose my autism right away unless I consciously decide it’s necessary. It doesn’t mean I won’t disclose it. It just means that I don’t want to lead with it.
I think what I’m going through is very much akin to what my gay friends have mentioned regarding coming out. At first, a lot of them felt that they had to tell everyone up front that they were gay — both to show that they were proud of who they were, and to get any homophobic insanities out of the way. But then they came to handle it differently. Instead of announcing it up front, they just started letting it come up naturally, such as in conversations about partners, or social justice issues, or the like. So instead of leading with, “I’m gay,” they’d just say naturally in conversation things like, “My partner and I went up to the inn this weekend,” or “I started fighting for social justice causes way back when I came out and joined the gay rights movement.” After all, straight people don’t greet every new person with “Hi, I’m straight.” It just becomes apparent.
By the same token, neurotypical people do not show up in discussion forums and immediately announce the nature of their neurology. I don’t see any reason that I should either, unless I determine that it’s necessary, according to my own lights. And so far, I’m finding my new approach quite interesting.
The only really odd thing about holding back is that I’m noticing that my pronoun use is, shall we say, problematic? For instance, when I talk about autistic or otherwise disabled people, I say, “they” rather than “we.” There is a serious cognitive dissonance going on, because I’m basically referring to myself in the third person. I have a feeling that this dissonance alone will drive disclosure, but it will have to happen in its proper context.
So I wasn’t quite ready to participate in Autistics Speaking Day this year. I fully support it, of course, but I was in such a different place in my process that it was difficult to get into the gear of writing something for it. It will be interesting to see how I feel about the whole subject next year.
© 2011 by Rachel Cohen-Rottenberg
I’ve recently begun reading Robert Murphy’s The Body Silent, one of the great books on the social and cultural context of disability. Murphy, a professor of anthropology at Columbia, became a quadriplegic in his fifties as the result of a benign tumor on his spinal cord. He wrote The Body Silent from the perspective of an anthropologist observing himself as a disabled person in the context of late 20th-century America.
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
On an April 26 NewsHour segment, Robert MacNeil fielded several viewer-submitted questions regarding his Autism Now series. Among other things, Mr. MacNeil was asked why he had not made visible the lives of autistic adults all along the autism spectrum, and why he had not invited autistic people to share our experiences and our concerns.
His answers were, in a word, disgraceful.
In the entire six-part series, Mr. MacNeil talked with only one autistic person. He asked Zach Hamrick, a young man with autism, about his job. Here is the exchange, in its entirety:
Robert MacNeil: Almost finished?
Zach Hamrick: Yes.
Robert MacNeil: Do you like the job?
Zach Hamrick: Yes.
Robert MacNeil: Do you find it easy, or is it hard?
Zach Hamrick: Yes.
Needless to say, asking an autistic person basic questions that require one-word answers, for a total of ten seconds, on a program that extends over six nights, does not even begin to address the nature of our lives. And so, I was very interested in seeing how Mr. MacNeil would handle questions about having excluded us from the program.
The interchange on the NewsHour segment took place between Mr. MacNeil and correspondent Hari Sreenivasan, with Mr. Sreenivasan forwarding the questions, and Mr. MacNeil supplying the answers. Two particular sets of questions caught my attention.
First, Mr. Sreenivasan asks, “[H]ow did you choose the stories that you did? And what else do you wish you could have done?”
Mr. MacNeil replies, “We didn’t talk about adults living now with autism, which is a very interesting story, and what their lives are, how they work, where they live, what kind of support they need.”
He considers our lives “a very interesting story” — an outsider’s perspective, par excellence. It’s as though we are a fascinating anthropological research project, rather than people, with basic human needs, in the here and now.
He continues, “We did concentrate on those about to become adults. And if anybody is interested in this and wants to read the transcript of the interview with Peter Gerhardt of the McCarton School in New York who is an expert on this, it’s really fascinating on what he envisions the lives of adults can be and should be.”
Yes, let’s talk to a non-autistic person who is an “expert” on what our lives can and should be, rather than to autistic people — who not only know how our lives can and should be, but who also know how they actually are. Why Mr. MacNeil feels the constant need to sidestep us in this way, to talk to other people about us, and to direct people to speak with those who “envision” our lives, rather than to those of us who actually live them, is beyond my capacity to fully understand. For a journalist whose only aim should be to uncover the truth, continually ignoring the primary source of that truth violates all journalistic standards, as well as basic common sense.
Rest assured, though, that things only go downhill from here. In forwarding another concern from a viewer, Mr. Sreenivasan says: “There’s a comment from John Horton, who writes in and says: ‘I think an adult with autism should have been included on the roundtable. They’re talking about them but not to them.’”
Mr. MacNeil’s response is so appalling, so illogical, and so dismissive that it will take me awhile to untangle all its implications.
He begins by saying, “Well, perhaps he’s right.”
Perhaps? It’s as though the question of interviewing the subjects of his series had never occurred to him before.
And he continues, “We tried to concentrate on what we thought were urgent issues, urgent problems. And a lot of adults with autism, particularly those who describe themselves as a kind of neurodiversity community, are high-functioning people with autism, who have busy and productive lives in the world, who serve a wonderful purpose of helping the community at large to understand and witness autism and be tolerant of it.
But they speak for themselves. And we didn’t see them as an urgent issue, as urgent as the impending arrival into adulthood of hundreds of thousands of teenagers with autism.”
Oh, God in heaven, where to begin?
Let’s begin by discussing the urgencies that attend the lives of autistic adults, shall we? Unemployment rates for autistic adults are skyrocketing, and services for developmentally adults are being ruthlessly cut. In a 2009 study in the UK, the National Autistic Society found that “79 percent of adults with autism who receive government assistance would like to work. But limited resources and lack of understanding mean that few have jobs and many have trouble even getting government assistance, leaving them ‘consigned to poverty’.” The picture in the US is equally bleak.
Moreover, autistic adults are especially vulnerable to becoming victims of crime. According to the Department of Justice, people with developmental disabilities, including autism, have a four to ten times higher risk of becoming crime victims and are twice as likely to be sexually abused as people without those disabilities.
Is it any wonder that the rates of clinical depression, anxiety disorders, and suicide of autistic people are higher than those of the general population?
Is all that urgent enough for you, Mr. MacNeil?
As for the idea that autistic adults who have “busy and productive lives in the world” should be excluded from a discussion about autism because “they can speak for themselves” — well, it’s absurd on the face of it. Why should being able to attain independence — which, by the way, is what every autism parent wishes for his or her child — disqualify us from speaking about our insights, our experiences, our concerns, and our views in order to improve the public’s understanding of the lives of autistic people? After all, Mr. MacNeil gave non-autistic people with “busy and productive lives in the world” more than their fair share of airtime on his program. Their level of functioning did not enter into his decision about whether to include them. Why should it affect his decision about whether to include us?
And why, oh why, should our ability to speak for ourselves be a reason not to allow us to speak at all? How does that improve the lives of autistic children in the here and now? How does it improve their prospects for the future? If they attain some measure of fulfillment and independence in adulthood, will they, too, be excluded from the conversation?
The logic of Mr. MacNeil’s statements works along familiar and divisive lines: If you can speak for yourself, you are not autistic enough to speak for other autistics. But if you cannot speak for yourself in any kind of conventional way, we will not allow other autistic people to speak about you, to express concern for you, to enter into the discussion about how to support you, or to share their reflections about what your experience of life might be like. We will only allow non-autistic people those privileges.
If “high-functioning” autistic people are considered ill-equipped to understand the experience of others on the spectrum, then on what logical or ethical basis can Mr. MacNeil, who is not autistic at all, justify speaking for any of us? If Mr. MacNeil has the right to speak about autistic people, then surely, we do, too.
Of course, I categorically reject the idea that only “high-functioning” adults can speak for themselves. There are many people, all along the spectrum, who can speak for themselves in a myriad of ways. Consider Carly Fleishmann, a nonverbal teenager diagnosed with classic autism and apraxia, who has learned to type over the past two years, and now attends honors classes in a mainstream high school. She is a funny, insightful, passionate young woman who travels the country helping people understand the nature of autism.
Or learn about Eric Duquette. When he was a child, his parents were told that he would end up in an institution. Last year, he was the salutatorian of his high school class, after having been accepted into every college to which he applied.
Or listen to the words of Jeremy Sicile-Kira, a severely autistic young man who graduated from high school last year and gave a speech, using a voice synthesizer, at his graduation ceremony. He, too, is going to college.
So, Mr. MacNeil, if you think that those of us who can speak are too “high-functioning” to talk about the lives of people diagnosed with classic autism, please go ahead and talk with them yourself.
You will find us describing the experience of autism in much the same terms. And you would do well to listen. After all, anyone who wants to create an “authoritative” series on autism needs to portray the lives of people all along the deep, wide, and diverse autism spectrum.
We will continue to expect nothing less.
© 2011 by Rachel Cohen-Rottenberg
Difficulty is not a welcome concept in our culture.
Everything is supposed to be easy. We have commercials that promise us a life of comfort. All we have to do is buy the right recliner, drive the right car, follow the right weight-loss program, or purchase the right labor-saving devices. The most valued people in our culture are young and able-bodied because, let’s face it, life only gets more difficult with age or disability.
The difficulties are physical as well as social. As much as I value who I am, I am not one to say that my disabilities are physically easy; add in the constant necessity of self-advocacy and the frequent experience of exclusion, and I’ve got a life that doesn’t come close to the ideal of ease and comfort that every advertisement tries to sell me.
It’s becoming clear to me that a great deal of our culture is based is the lie that life is supposed to be easy. And I’m coming to feel that this lie, in itself, is responsible for a great deal of the struggles that we face as disabled people.
While I’ve had the unbelievable privileges that come with being white, American, middle class, and educated, I’ve also had my share of hard times. For most of my life, I’ve gotten through the hard times by thinking, “Well, next year (or when I graduate/get married/have a baby/buy a house), life will be easier.” Sometimes, it has gotten easier (before it’s gotten harder again), but lately, life just feels plain difficult. My hearing condition take a lot of energy, a lot of discipline, and a lot of work. It is what it is. There is no changing it. At some point, I might grow so accustomed to my disability that it feels easier to carry, but I’ve stopped setting my sights on that mythic day. It might come, and it might not. Who knows? At this point, I have to stay with what is. I am much more in the present moment than I have ever been, simply doing the work that needs to be done.
But sometimes, I still catch myself thinking, “What the hell happened? Life is supposed to be easier.” And trust me when I say that thoughts of how life is supposed to be make the life one is actually living so much more difficult. The dissonance between the ideal and the real is both draining and painful.
And so, of late, I’m coming to accept that life is difficult. I think it’s difficult for most people on the planet. In the rich countries, we get desensitized to this fact—partly because we’re promised a “happily ever after,” and partly because a lot of people in the rich countries actually have it pretty good a great deal of the time. So, because many folks don’t see the kinds of lives that most people live, they become unfamiliar with the idea that life is full of harsh and painful things. And when they come up against those harsh and painful things in their own lives, they panic, because nothing has prepared them for the inevitable storm.
I’ve come to feel that one of the primary reasons that disabled people are so ostracized and excluded in our society is that we remind everyone that life is a messy, fragile, difficult thing. Our very existence flies in the face of the myth that, with the right combination of hard work, positive thinking, willpower, and possessions, life becomes what it’s “supposed” to be: safe, easy, and fair. Our interruption of the cultural myth is one of the reasons that all disabled people, at one time or another, have the experience of feeling invisible, even when in plain sight. It also explains why our attempts at inclusion are met with everything from good intentions that miss the mark to the mind-boggling experience of outright hostility.
If you weren’t born with a disability, but you live long enough, aging is sure to take you out of the camp of the typically able-bodied. Dealing with that change, at an advanced age, can be very hard. For the past few years, my husband has been going down to New York City, on a regular basis, to visit and care for his dad. At 94, his dad is fortunate to be able to live in his own apartment but, as the years have gone by, he has lost more and more of his ability to do the things he’s always done. These days, he is physically very frail and requires a great deal of assistance. Every time Bob visits, he hears his father’s constant refrain: “I’ve lived a charmed life. It wasn’t supposed to end up this way.”
And I hear him. I really do. Despite all the work I’ve done, I’ve heard those words coming from deep inside me, too. In these past several years, I’ve said to myself many times: “This is not how things are supposed to be.” So many of us are unprepared for the harsh realities.
In many ways, I’m lucky to be struggling with these realities at 52. It would be much harder to face them, for the first time in my life, in my 90s. I’m fortunate to be learning that, while it’s a long road from pursuing ease to grappling with difficulty, it’s also a long road from life being difficult to things being impossible. There is a pervasive tendency in our culture to elide the two, as though any difficulty is simply out of the question. From this confusion of the difficult with the impossible comes the trope of the “inspiring cripple” (and its counterpart, the “inspiring caretaker”). It’s as though typical people look at us and think, “Oh, you are so inspiring! If that were me, I would find it impossible!”
Sometimes, when I run across this kind of thinking, I just want to shout, “No, no, no! As long as we’re alive, difficult is not the same as impossible!” The two may look like the same thing to an outside observer, the two may even feel like the same thing in most people’s experience, but they are not the same thing. At all.
We learn to adapt. I’ve adapted quite well and found a number of creative ways to work around my difficulties. I can’t say that I’ve adapted to being treated in all the ways that disabled people are treated in this culture, but give me time. I’m working on it.
© 2011 by Rachel Cohen-Rottenberg
In the course of our trip to Maine last week, I learned the importance of expressing my appreciation to the people who provided accommodations and accessibility.
As soon as the employees at the inn began giving us quiet places to eat, I found myself looking for opportunities to let them know what an enjoyable time I was having. For instance, when we were seated in the dining room away from the other guests, I said, “Thank you! This is just what I need.” When we were seated in a quiet area for breakfast, and the waiter asked whether the situation was working for me, I said, “Absolutely. This is just perfect.” When the restaurant manager asked us whether we were enjoying our stay, I said, “People here have been very helpful in working around my sensitivities to sound. It’s made all the difference in the world. I very much appreciate it.”
Now, this course of action may sound like ordinary politeness—and perhaps it is—but I always feel myself walking a very fine line. On the one hand, I know that I have a right to inclusion. And so, I could just have sat there with a smug attitude that said, “I deserve this treatment. Why should I thank you?” And yet, it’s just not in me to act that way. Yes, we all deserve inclusion, just as we all deserve love, friendliness, and beauty in our lives, but it does no harm to say “thank you” to the people who provide them. It’s good for the soul of the receiver and for the soul of the giver.
On the other hand, saying “thank you” for accommodations can easily turn into a self-effacing apology for our needs, as though we’re getting a favor that we don’t deserve. It is all too easy to venture into the realm of “Thank you for giving me this special treatment,” or “I appreciate that you don’t mind my being such a bother,” or “It’s so nice of you not to get irritated by my request.”
No. When asking for accommodations, there is no special treatment involved. What we’re asking for is to be treated as equals. And if a person is bothered or irritated by our respectful, persistent requests to be treated as equals, I would count that as a very good thing. After all, in order for anything to change, people have to move outside their comfort zones and carve out new ones. Otherwise, they’ll never expand their ideas of what’s possible, what’s deserved, or what’s ethical.
Perhaps the best way to express appreciation for accommodations is to say, “I want to acknowledge the way you accorded me respect and provided equal treatment. You did an excellent job.” To my mind, this type of statement increases one’s dignity, and it lets the other person know that he or she hasn’t just followed the law or provided good service. The person has engaged in an ethical, potentially life-changing moment for another human being. And by showing our appreciation, we make it more likely that the person will provide accommodations to the next disabled individual who comes through the door.
The other night, my husband told me that he is planning to write a letter to the hotel manager. He wants to let her know how much he appreciates what her staff did for us. When I asked whether we should write the letter together, or whether I should be the one to write it, my husband kept pushing back with “That’s okay. I’ll write it.”
At first, I felt left out; after all, shouldn’t I be the person to follow up? But now I realize that when people make accommdations for me, they also make accommodations for my husband as an individual, and for both of us together. When my own possibilities expand, we can do more things together, and my husband’s enjoyment increases.
I think that it’s important that our loved ones express their appreciation on their own behalf, because we do not exist in isolation. How people treat us deeply affects the people who care about us. So, as much as I want to follow up with a letter myself, I’m going to let my husband have his say.
God willing, I’ll have many other opportunities to say “thank you” myself.
© 2011 by Rachel Cohen-Rottenberg
My husband and I just got back from a few days in Maine, where we went to celebrate our eighth wedding anniversary. We stayed at an inn on the coast that we’d enjoyed when we were first married. The place is wonderful: great food, beautiful rooms, friendly staff, and a large common area with a fireplace. We had agreed that we should prepare to make adjustments in order to keep my auditory system happy, including eating in our room if the staff couldn’t find us a quiet place to sit in the restaurant. We figured that the whole point was to be together, and that we’d have a good time, no matter what. We hadn’t gone on vacation in years, so we were determined to have a good experience.
And we did have a fun time, but it took some doing. Ultimately, we had an even better time than I’d hoped for, and I learned a lot along the way.
When we checked in on Monday, my husband explained that I have hearing difficulties, and that we would need a quiet place to have our meals. The nice young man at the check-in desk said they would do their best—not exactly a commitment, but promising.
When we showed up for dinner, my husband explained that they needed to turn the music down if we were going to be able to be there. What he meant was “off,” but what he said was “down,” and I didn’t bother to clarify. Of course, I should have said, “In order to be here, I need you to turn the music off completely. Would you do that?” But I didn’t feel confident enough to risk an initial refusal and continue the conversation. Instead, I lapsed into the denial of “Well, it never actually works for me to converse in a place with music playing, but maybe this time, it will.” Yeah, right. That was my first mistake.
The person who seated us did not get it. She tried to get us to sit at the far end of the restaurant, away from the speakers, which didn’t help, since the room was quite small. I don’t know what she was hearing, but my ears weren’t picking up any difference in sound whatsoever. So, I said, “You’re really going to need to turn the music down in order for us to stay.” She said she would.
We waited: one minute, two minutes, three minutes. Still nothing. I was starting to max out. When she came by again, she said, “So, how is that?”
I was shocked, but still in good enough shape to say, “Did you actually turn the music down? I hadn’t noticed.” I even made eye contact—which, as you know, is a big deal for me. It’s kind of critical to do that when you’re needing to get politely in someone’s face, so I managed. When she registered what I’d said, she looked at me as though she expected me to back down. I didn’t. I just kept looking at her.
And then my husband chimed in with, “Could you please turn the music down?”
Unfortunately, that’s when the woman said, “No, that’s all I can do,” in a tone of voice that would have been more appropriately applied to the statement, “I’m so glad you’re enjoying your meal. Let me know what else I can do for you.” I’m a classically trained musician, and I can read vocal tones like no one’s business. This woman’s tone was so inappropriate to her words that it was unnerving.
My heart was steadily dropping toward my shoes, and believe me when I say that I really need to work on that response. It doesn’t help at all. And here’s where I made my second mistake: I really wanted to up the ante about the music, but all I could feel was “What’s the use?” and I let that feeling win. And for my husband’s sake, I decided to stay. So, I put my earplugs in, and doing so made the music recede quite nicely. Of course, I had trouble hearing my husband, and had to ask him to get close to my face and repeat himself a bunch of times, so it was very tiring, but I sat there because, for some strange reason, I thought I should.
Once the food was served, we were able to begin our meal. There were only two other couples in the restaurant, and they were very soft-spoken, so I rationalized that things could always be worse. Of course, in the process, I completely ignored that I was doing way too much work for what should have been a relaxing dinner.
And then, as if on cue, things got worse. The chef came out and started yacking, in a loud voice, with the man at the table next to us. I could hear him quite clearly through my earplugs—that’s how loud he was. And he went on, and on, and on. After awhile, I just started staring at him, and it wasn’t a polite stare. He made eye contact with me a couple of times, but he just kept going. I very badly wanted to say, “Could you please lower your voice? We’re trying to enjoy our meal here.” But giving into the waitress’ refusal to turn down the music had already diminished my sense of power, and I didn’t feel comfortable or centered enough to confront him. Plus, my auditory system had long since started screaming, “Why the hell are you still in this room?” I was not exactly at my best.
Failing to confront the loud chef was my third mistake. It only made me feel more disempowered.
I found myself eating my meal really fast, just to get out of there, and I left in short order. And worse, I was absolutely exhausted and miserable for the rest of the night. I was upset, I couldn’t think straight, my stomach hurt, I felt nauseous, and every muscle in my body was tense. I was wiped out.
When Bob got back to the room, we agreed to figure something else out for the next day. And we did. He went to the restaurant manager and explained the situation, and wow, did he get results! They agreed to seat us in our own little area of the restaurant, with a door that would shut out the sound from the rest of the place. When we got there the next night and found that no such arrangement had been made, my heart sank again, but when we inquired, the waitress said, “Oh, yes, we’ve had a change of plans. We’ve decided to serve everyone in the grille, and you can have the entire dining room all to yourself, without any music playing at all.”
Can you imagine? The silence was so sweet. I was in heaven. We had a wonderful meal and ended up feeling very refreshed. And the next morning, they gave us our own little dining area for breakfast, away from music and conversation.
So, when all was said and done, we had a great time. We ate delicious food. We walked on the beach in a snowstorm. We sat by the fire and read. We watched movies. And we relaxed. When Wednesday arrived, it was difficult to leave, but I felt better in my mind by the end of our time there than I’ve felt in awhile.
On the way home, we debriefed, and I realized how much I’d learned about self-advocacy from the whole experience. Here’s what I realized:
a) I have to plan ahead of time. For instance, I cannot wait until I show up at a restaurant before I explain my situation and negotiate what I need. So, before we go on our next vacation, I’m going to write a letter to the manager wherever we stay, explaining the accommodations I need, and getting agreement on what they will provide. That way, even if I show up and they don’t give me the accommodations right away, I’ve got a basis on which to argue without having to start from scratch. I can take out my letter and say, “Look, I explained the situation well in advance of coming, and you agreed to make accommodations before I ever showed up. So, how do you intend to fulfill your part of the agreement?” And I can just keep asking that question until I get what I need.
b) I cannot try to be in an environment that does not work for me. Ever. I cannot sit in a restaurant with music playing and expect to converse. I cannot filter out the sound when people nearby are talking. I cannot filter out the sound when people in another part of the room are talking and their voices are carrying. It does not work. Those days are over. I’ve been learning this lesson, over and over, in all kinds of ways. I end up in pain, pure and simple. If I’m by myself and the room isn’t too loud, blocking my hearing works more or less well. If I’m with someone else, though, blocking my ears is beside the point.
So why did I slip into denial at the restaurant in Maine? Why didn’t I ask for the music to be turned off? Why didn’t I say at the outset, “You know, I need a place away from music and conversation in order to enjoy my meal. Can you help me make that happen?” Why did I make these compromises that are so bad for my health? I wasn’t just avoiding confrontation. In the past, setting these limits has made me feel isolated and so, in order to avoid that feeling on our vacation, I put up with things that made me sick. But when the accommodations finally came through, I saw once again what was possible. I saw that I have a right to go places and enjoy myself like everyone else, without rendering myself ill, and that I can advocate for that right. My disability is not purely physical. It’s largely socially constructed, and there are ways around it.
Self-advocating doesn’t mean that every place will become accessible to me, but I increase the odds considerably by insisting on being included, and by trying to work with people to make that happen. After all, I don’t need to go out all the time. I’m on friendly terms with my solitude. But I would like to be able to go out once in a while and have it work. There are a couple of restaurants in town that seat us in quiet areas, away from ambient sound, where we can enjoy our meals. I know that it’s possible, and I need to remember that.
c) I very badly need to undo the cascade effect that begins with failing to ask for what I need, or with giving in to refusal and dismissal. Once I let go of my power and back down in one instance, it gets that much harder to find my power again when I need to stand up in another instance. It wouldn’t be so terrible if these instances were spaced days, weeks, or months apart, but when you’re dealing with sound, they can be spaced moments apart. If I give in and say, “Okay, I’ll compromise in this one instance, even though it won’t be good for me,” it’s nearly impossible for me to meet the next instance and say, “Okay, that’s enough.” Instead, I just keep backtracking, and that only makes the situation worse.
d) Being disabled makes self-advocacy a lifelong, daily necessity. I hadn’t really wanted to face this fact before, but it really hit me full force this week. I hate being confrontational face-to-face; so many of my adjustments to all of my disabilities have been along the lines of, “Don’t mind me. I’ll manage.” That just isn’t going to work anymore, because in truth, with my auditory system in the shape it’s in, taking a “don’t mind me” approach is bad for my health. It would be like acceding to pull myself by the arms down the street rather than use a wheelchair and insist on curb cuts. My auditory processing condition may be an invisible disability, but that doesn’t make it any less serious or put me in less pain.
e) Self-advocacy includes allowing others to speak up on my behalf when they are available to do so. I’ve resisted this idea, because I always feel that I should be able to do everything myself at all times, but that’s really based on an illusion.
The fact is that no one does everything alone all the time. Everyone gets help. The help is often invisible, because the world is set up for typically able-bodied people, but a great deal of the time, non-disabled people get plenty of help. As long as I don’t give my power away to the person speaking on my behalf, or allow asking for assistance to make me feel less than competent, or come to depend on someone else’s voice more than on my own, I’m okay. After all, Moses let Aaron speak for him sometimes, right?
And if no one is there to speak on my behalf, I am fully capable of finding the inner strength to do it myself. I’ve been doing it more and more as I realize my right to be fully a part of this world. Practice makes perfect, and I am seriously practicing.
f) It’s very difficult to do self-advocacy, emotionally as well as physically, so I need to reduce my worry and tension over it. I have to breathe, relax, and choose my words carefully and to best effect.
I never imagined that I’d have to do any of these things. My life is not how I’d once thought it would be, but whose life is? My life is what it is. All I can do is meet it head on, knowing that I have a right to respect and inclusion, just like everyone else.
© 2011 by Rachel Cohen-Rottenberg
I’ve recently had a very painful experience on another site. It’s not the first such experience I’ve ever had, and it likely won’t be the last. I’m not going to mention the name of the site, partly because I like the people who run it, and partly because what happened is not at all particular to them. It happens all the time, and it wouldn’t be fair to call them out specifically without naming every other equally problematic situation. Similar instances are so abundant (and multiply so rapidly) that I’d never get to the end of it.
The site I’m talking about is not someone’s personal blog. What people say and do on their personal blogs is none of my business, really. I mean, if I don’t like what they say, I can just stop reading, yes? No one invited me in, and I can always find the door. However, the site in question is one of the many “autism community” sites that posts articles from folks involved with autism in one way or another. I tend to have more of an investment in those sites, because most of them actively invite participation from all comers and present themselves as being inclusive. I’m a sucker for all that. Truly.
But it’s one thing to say “We want to hear a range of perspectives” and “We’re an inclusive community” and quite another thing to make it safe for everyone to participate. When it comes to places being safe for all comers in the autism community, we Autistics tend come in last.
I’m pretty certain that most people who read my blog can come up with any number of examples of what I’m talking about. In fact, these experiences are probably the reason that a lot of people come to my blog, and others like it, in the first place. But for the sake of clarity, I’m going to be specific about the kinds of things that make places feel unsafe. In addition to references to autism as an “epidemic,” these things include, but are certainly not limited to, posts and comments in which the writer says the following:
How disappointed the person is to have an Autistic child
How angry the person is that his or her Autistic child isn’t “perfect” (and yes, that word gets thrown around a lot)
How altogether unfair it is not to get the child the person dreamed of
How getting an autism diagnosis is like finding out that someone has died
How autism is analogous to a fatal disease
Now, I’m not saying that it’s not okay to feel these things. Everyone is human, and everyone has the experience of life not aligning with their deepest hopes and dreams. That’s where grief comes from and, trust me, we Autistics have had these experiences—not because something is Terribly Wrong With Us, but because we once had a dream that the world would love and respect us for who we are, as full human beings with a complete set of human feelings, and the world seems bent on reminding us that it just ain’t happening.
So yeah, we totally get it. Truly. And as I said, it’s fine for people to have these feelings. What’s not fine, to my mind, is to create a forum that is supposed to be inclusive, and then allow people to say demeaning things without a hint of self-reflection or self-criticism. It’s one thing to say, “When I got my kid’s autism diagnosis, it felt like I’d just been told she had cancer, but then I realized how demeaning that is and, for the sake of my child and others like her, I’m not going there again.” I support that. But it’s quite another thing to say, “When I got my kid’s autism diagnosis, I felt like I’d just been told she had cancer, and why should such a thing happen to me?” And when ten, or twenty, or thirty, or a hundred people chime in with a version of “I know! It’s all so unfair!” without any pushback at all from anyone, it just adds insult to injury.
Why do these people say these things? Do they think we’re not listening? Do they think we don’t have feelings? Do they think, in some secret place in their minds, that we really are second-class citizens, of no particular importance? Or do they consider us such a burden that they’ve decided that their feelings trump ours? To tell you the truth, I don’t know and, at this point, I don’t care. Over the past couple of days, I’ve realized that I’ve got to stop asking the Why is this happening? question. It’s a bottomless pit of a question, because the answers all have to do with people’s personal issues and, if we keep waiting until people get clear on their personal issues, nothing will ever get better.
Rather than framing it as a personal issue, I’m going to frame it as an ethical issue, because that’s really what it is. So I’m not going to burn a lot more grey matter on the Why is this happening? question. Instead, I going to turn my attention to the What can we do to stop this from happening? question.
As one of my fellow Autists said to me, just imagine if someone compared his or her gay child’s coming out with a Tragedy of Epic Proportions. There are some people in the world who do consider it a Tragedy of Epic Proportions to have a gay child, but a large proportion of straight people would consider that perspective to be seriously messed up. And not only would they consider it seriously messed up, but they’d take the expression of that perspective as a golden opportunity to say so. It’s not that they’re insensitive to the feelings of people who believe that their gay children are literally headed straight to hell. The pain of that must be excruciating. It’s that they’re sensitive to the impact of this kind of talk on people in the LGBT community and what it does to the lives of living, breathing, fully formed human beings, every minute of every day.
But I have never—and I mean, never—seen any non-Autistic person on any blog, anywhere, stand up and put a stop to this kind of talk about Autistics. I’ve seen Autistic people try to put a stop to it. I’ve been one of them. But not once has any non-Autistic person backed us up by telling their fellow non-Autistics to knock it off.
Usually, when I protest, I get roundly ignored. If I do get a response, it’s generally along the lines of, “Thank you for your perspective, Rachel. It’s very valuable.” When I’m posting on a mom blog, and I share my insights about what the person’s Autistic child might be going through, I love hearing exactly that response. In fact, I only read mom blogs in which people appreciate my contribution, because those moms realize that Autistic adults can give them a perspective that no one else can. But when I’m crying out against demeaning words that harm the minds and hearts of Autistic people, telling me that what I’m saying is valuable isn’t nearly enough. Not even close.
Parents, you have to stand up against demeaning words. You have to push back. You cannot leave it to us to carry this burden alone. When I protested about the situation on the site in question, one of the site owners said, “I think it’s important that you keep coming back here to educate people.” And sure, I’m all for educating people—but it’s a bit much to put that responsibility solely on the shoulders of the beleaguered minority, and to walk away from the responsibility yourself. If you don’t understand that you need to stand up with us, how successful can my “educating” really be? And if you’re a member of the majority, and you don’t serve notice to other people in the majority that you will not tolerate people using words that batter our hearts and minds, they will feel permitted to keep using those words. Forever.
If it were only people of color who had fought for civil rights in America, we wouldn’t have any civil rights legislation at all. If it were only LGBT people who had fought for gay marriage, I woudn’t have lived in two states that have legalized it. The outrage of the majority is necessary to the civil rights of the minority. Always. We can keep your feet to the fire, but we can’t change the world alone.
Look at all the violence against women in our world. Why does it happen? We’ve had feminism, and the women’s movement, and all kinds of powerful women in all kinds of positions of authority, for many decades now, and yet, women are still being battered at an alarming rate. It’s not because women haven’t worked hard to end it. It’s because most men consider it a woman’s problem. Plenty of men do not assault women, but how many of these peaceful men actually get together and say, “We must put a stop to this. We must do everything we can to stop other men from believing that it’s perfectly all right to beat up a woman”? Precious few. They figure that they’re not doing the battering, and that’s enough for them.
It isn’t. And if you really want to make the world better for your Autistic children, it isn’t enough to respond with “Thank you for your perspective” when Autistic people say, “Stop using words that demean and belittle us.” It isn’t enough to be the one who doesn’t use those words. It’s time to start calling out the people who do. It’s time to say, “Stop using those words. They’re not just demeaning to your child. They’re demeaning to my child. They’re demeaning to any Autistic person who hears them, and they’re demeaning to Autistic people everywhere.”
In my own community, there are a number of Autistic young adults that I cannot reach. They do not want to spend time with other Autistics—not because they’re decided that they have better things to do, but because they have spent their lives so battered by the talk of pervasive wrongness and tragedy and brokenness that they are in complete rebellion against being Autistic at all. And I can’t say that I blame them. But these are not people who are “passing” for neurotypical. These are people who are struggling with everyday tasks and seriously in need of support. And yet, they want nothing to do with the very people who could include them in a supportive community.
I don’t think that every Autistic has to self-identify as Autistic; there are plenty of ways to construct identity, and as long as that identity is positive, I’m happy. But we’re not talking about people who have constructed a positive identity. We’re talking about people who are fleeing from themselves and ending up completely isolated, with neither a clear, healthy sense of self nor a welcoming group of people in which to be themselves. And why? Because they’ve heard one, long, unbroken message all their lives that they are one big tragic disappointment, and no one in their lives has put a stop to it.
I will spend the rest of my life helping Autistic people to create a strong, empowered, positive Autistic identity, free of shame and stigma. I know many people in the Autistic community who have the same commitment. And community is crucial; without it, we’re stranded. But creating a refuge is not enough. We have to create a world in which people do not feel like walking disappointments. We can talk about inclusion all we want, but if people feel that their very existence is a tragedy, they can’t even begin to avail themselves of what inclusion really means.
So if your heart is broken by the way the world treats your children, stand up for them by standing up with us. Their fate is inseparable from ours.
© 2011 by Rachel Cohen-Rottenberg
Several months back, I wrote about the results of my July audiology assessment. A few months after the assessment, I began to feel that something had gone terribly wrong and that my auditory processing had gotten significantly worse.
My first inkling came in the form of a visual. One night, as I thought about the way I’d been processing auditory information, the image that came to mind was a feeling of the walls closing in. It was as though I were in a room that was getting smaller and smaller, so that every way I turned, I hit a wall. It was terrifying. I decided to call my audiologist’s office and schedule another appointment right away. When I told the receptionist what was wrong, she agreed that I needed to come in as soon as possible.
When I went in for the appointment on November 11, the audiologist asked me how the process of tapering off Lorazepam was coming, and I told her that I was almost done. (I am now completely off the Lorazepam—for good!) In all other respects, my health has actually been improving. I’m sleeping better. My other sensory sensitivities have lessened. My thoughts are clearer. My emotions are more manageable. All of these things have gotten better while my auditory processing has felt like it’s been spiralling downward. The audiologist suggested that perhaps my auditory processing abilities were stable and only seemed worse when contrasted against everything else.
I was hoping she was right. Unfortunately, once we did the tests, we found out that she wasn’t. My auditory processing abilities have drastically gone downhill. Here are the results of each test:
Pure Tone Audiometry
This test consisted of a series of tones. When I could hear a tone, I pushed a button. The test showed no change since July. The mild hearing loss in my right ear and moderate hearing loss in my left ear have remained stable.
Auditory Patterning
The auditory patterning test measures how well the subject can hear and replicate relative pitch. The audiologist played a series of three sounds and asked me to tell her whether the pattern was “low-low-high,” “high-high-low,” and so on.
July assessment: I scored 100% in my left ear and 100% in my right ear.
November assessment: I scored 100% in my left ear and 100% in my right ear.
These results didn’t surprise me. As I’ve said before, ordering things into patterns will be the last of my faculties to go.
Auditory Closure
The auditory closure test measures how well the subject can hear words spoken very quickly. Auditory closure is an area of processing that concerns the listener’s ability to fill in missing or disorted patterns of the auditory signal and recognize the whole message. It is an area of processing that can have a direct impact on a person’s ability to understand degraded speech.
July assessment: I scored 48% in my left ear and 52% in my right ear.
November assessment: I scored 48% in my left ear and 52% in my right ear.
During both assessments, this test was very difficult because I couldn’t hear the words clearly enough to form a word-picture in my mind. I’m unable to hear soft consonant sounds like “p” or “th”; they’re at a frequency that my ears don’t pick up. Any sound at this frequency drops out at the end of a word. When words come at me slowly, I can usually run through the list of possible meanings in my mind’s eye, but when the words come at me quickly, the sense of the sound fading away is especially acute, and my ability to see the words in my mind breaks down.
When I couldn’t see the word in my mind, I became very frustrated with the process, which probably accounts for why I become overwhelmed when people around me are talking too quickly.
Both sets of scores are in the Poor range, but at least there had been no change since July. The audiologist concluded that I am “presenting below normal limits in this area of processing.”
Binaural Integration
The binaural integration test measures how well the subject can hear out of both ears simultaneously. Binaural integration is an area of processing that can have a significant impact on a person’s ability to understand multiple auditory signals at the same time. People with difficulties in this area often have a difficult time understanding when more than one person is speaking at the same time.
The audiologist played a series of four numbers: two in one ear, and two in the other. I had to repeat the numbers to her.
July assessment: I scored 90% in my left ear and 92.5% in my right ear.
November assessment: I scored 28% in my left ear and 65% in my right ear.
This test was immensely frustrating. In my July assessment, I had dealt with my processing limitations by memorizing what I’d heard, visually lining up the image of the numbers in my mind’s eye, and then speaking them. In my November assessment, I could not line up the numbers in my mind’s eye at all. By the time I had gotten to the last couple of numbers, I’d have forgotten the first ones. A few times, I remembered three of the four, but mostly, I could only identify one or two. At one point, I noticed myself listening only out of my right ear in order to simplify the process, so of course, I only heard half of what came into both ears.
The November scores are in the Poor range. The audiologist concluded that I am “currently presenting with significant difficulty in this area of processing.”
Binaural Interaction
The binaural interaction test measures word recognition in noise. Binaural interaction is an area of processing that can have a significant impact on a person’s ability to understand speech in the presence of background noise. The noise can include anything from the scraping of chairs to the hum of fans and overhead projectors or speech. People with difficulties in this area often require a greater signal-to-noise ratio in order to pick up and understand more of what is being said.
For this test, the audiologist played a series of words spoken in the midst of noise. For each word, I had to repeat what I had heard.
July assessment: In my left ear, I scored 80%, and in my right ear, I scored 68%.
November assessment: In my left ear, I scored 32%, and in my right ear, I scored 20%.
In my July assessment, I had been able to fish many of the words out of the noise, hold them in my visual memory as word-pictures, and then speak them. In my November assessment, I couldn’t make out enough sounds in most of the words to form a word-picture in my mind at all. A number of words simply disappeared into the background noise. For others, I could make out a vowel sound and a consonant, but I could not even venture a guess as to the other letters.
At one point, when I was nearly in tears, the audiologist stopped the test and simply played a series of words in quiet, first in one ear, and then in the other. It was as though I were looking at black letters standing out against a white background. I scored 100% in quiet. Then, she kept going with the words in noise and the letters began fading out again.
Needless to say, the November scores are in the Poor range. The audiologist again concluded that “I am currently presenting with significant difficulty in this area of processing.”
The audiologist was perplexed about my scores dropping so sharply, so she gave me a referral to a neurologist. My sense of what’s happening is that my compensatory mechanisms have broken down, probably from decades of overuse, so that I’m now left to deal with an auditory processing system in shambles. In February, I have an appointment with a neurologist at Dartmouth-Hitchcock to do further testing, so I’ll let you all know if anything interesting comes to light.
© 2010 by Rachel Cohen-Rottenberg
Last week, we received a fundraising letter in the mail from a local agency that serves people with developmental disabilities and mental health issues. It’s a very good organization that we wholeheartedly support, but the letter contained a moment of “us and them” thinking that I could not let go unanswered. And so, as the ASAN-VT chapter leader, I wrote and sent the following letter to the executive director. (I’ve changed her name for the purposes of this post.)
December 1, 2010
Dear Ms. Graham,
This week, I received your fundraising letter in the mail. My husband and I intend to send in a contribution to your organization, as we fully support all the great work that you are doing.
I was troubled, however, by the following sentence in the second-to-last paragraph of your letter:
“We have found, over and over again that people with disabilities want the same thing that you and I want—family and friends, being connected to their community, and meaningful employment.”
The phrase “you and I” is set off in contrast to “people with disabilities,” as though the reader addressed as “you” could not possibly be a person with disabilities. Many of us who are disabled receive and read your letters, and being excluded from the audience of the letter does not engender a feeling of connection to our community.
Words have a great deal of power. Given that one in five Americans is disabled, and that all of us run the risk of becoming disabled at some point in our lives, we must remember that there is no “us” and “them” here. We are all in this together.
Sincerely yours,
Rachel Cohen-Rottenberg
Chapter Leader
Autistic Self Advocacy Network of Vermont
I’ll let you know whether I receive an answer.
© 2010 by Rachel Cohen-Rottenberg
Journeys with Autism by Rachel Cohen-Rottenberg is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Journeys with Autism