The Pro-Choice Argument I Never Want to Hear Again

Ultrasound image of fetus in uterus.

 

Last month women marched in Washington DC; in part to maintain their legal right to decide whether people like me should exist.

I will say up front that I think abortion should remain legal in the United States. I know that when it’s been made illegal elsewhere, more human beings die. I think that access to birth control should be free and unlimited, and I’m willing to put my money behind it. But sisters please gather round, because we need to have a talk. Some of the arguments I’ve heard presented on behalf of abortion rights are appalling, and you need to understand why.

I’m disabled and I love who I am. I’m an abuse and neglect survivor, and I love who I am. Despite the difficulties I have faced, and will very likely continue to face, I’m grateful for my life.

The most misguided argument in promotion of the right to legal abortion is what I’ll call the freedom from a life of suffering argument. Sometimes it goes something like this: Abortion shouldn’t be restricted because most unwanted children end up horribly abused and neglected, and there aren’t enough homes for all of them! Other times it goes like this: People with medical condition x have very hard lives. A child with medical condition x would be a burden to me and society. I wouldn’t want my child to have a hard life as a person with medical condition x.

Sounds reasonable right? I mean who is going to step up and argue on behalf of child abuse and neglect or its effects on survivors? Who’s going to promote leading a life with obstacles around every corner?

But the appeals are neither reasonable nor compassionate. They are dehumanizing and debasing. Just because a child is unwanted by his or her biological parents, she or he is by no means doomed to a childhood filled with abuse. Unwanted does not necessarily equal abused. Conversely, a wanted child is by no means guaranteed a life free from abuse or neglect.

Most importantly, even if a child (wanted or unwanted) does end up experiencing abuse or neglect, it is the right of that human being to decide for herself whether life is worth living as a survivor.

The second manifestation of the freedom from a life of suffering argument serves to promote genocide against people with disabilities. It is common knowledge that pre-born people with genetic markers associated with disabilities are frequently aborted.

My mother liked to remind me throughout the course of my childhood that she could have aborted me. The power granted to her by that statement was palpable. It was visceral. I didn’t have to be here. I was only here because of what she presented as her nearly messianic benevolence.

The very fact that I exist today and advocate for disability rights would not be the case if my mother had chosen to hand over the right sum of money to the right doctor.

My mother allowed the men in her life to abuse me. I was homeless as a teen and resorted to prostitution to survive when I was still a minor child. Would I rather have been humanely relieved of this life so that I never had to endure that suffering?

No.

It took me a good deal of time to recover from the abuse I endured as a child and teen. Years of meditation and reflection finally allowed me to see things as they are and were. Temporary. Transient. Non-defining. Traumatic events were experiences I had lived through. The experiences were not me. They were events in time that had not been instigated by me. I was free to choose how my mind responded to them. I was free to live a life that extended beyond those events.

I was not doomed. I have not perpetuated some mythical cycle of abuse. I am a human being who speaks. I am a human being who thinks. I am a human being who loves. I am a human being who matters.

Just because you can’t imagine surviving what I have survived does not make it your moral right to decide for me or anyone else whether they can survive and thrive. Survivors of abuse and people with disabilities are often told horrific things. People say to us, “I’d kill myself if I was deaf/blind/paralyzed…”, “I’d die if that happened to me.” It is this same mentality that drives people to declare that some children should compassionately be spared the burden of existence, because they may endure challenges that seem unfathomable to some.

That I experience disability, marginalization, and abuse survival does not mean that my life is not worth living. It does not mean that I shouldn’t be here to use my voice. It does not mean that I shouldn’t be here to love and lift up others in my community.

Imagine if a woman stood up and recommended gender selective abortion for female embryos based on the argument that women are statistically more likely to encounter adverse life events like rape and discrimination. What if a woman recommended euthanasia for females who had been raped based on the argument that females who have been raped will inevitably suffer.

To stay consistent in our reasoning we might then want to consider the forcible sterilization of all women of childbearing age in all war zones across the globe. Because what kind of future could a child born in a war torn environment have?

Do those ideas strike you as reprehensible? I hope they do. They’re very analogous to the pro-choice freedom from a life of suffering argument.

Child abuse and neglect need to end. There needs to be more support for survivors. Likewise, people with disabilities need support, as every human being needs support. Nothing about my disability reduces my humanity.

Even though abuse and neglect persist, a person cannot reasonably consider themselves to be moral if they believe they can decide for me that I shouldn’t be here because I’m a survivor of crimes perpetrated against me or because I live with disabilities. If women have compassion, then they must recognize that it is not within their moral power to determine whether another human being who poses no threat to them has the right to be on this planet. If my life isn’t a threat to yours, I have just as much a right to be here as you do.

I believe that everyone has the right to be here. Every single one of us. Disabled and able, of different sexual orientations, of different genders, all ethnicities, all religious affiliations, no religious affiliations, and of all nationalities. All of us have a right to exist and a right to self-determination. We have a right to love each other, support each other in our struggles and hold each other accountable for our errors. We have a right to basic necessities like food, water and health care.

I’m not looking to change laws, I’m looking to change the conversation. I think there are some circumstances where abortion is absolutely a moral choice. But the appeal to freedom from a life of suffering argument needs to be examined and discarded, because if lives like mine aren’t respected, then the conversation is in no way liberating, empathetic, pro-woman, or inclusive.

 

Research Uncovers Possible Mechanisms behind PMDD

Survivors of PMDD, their families, and in some cases their health care providers welcomed news this week that research has revealed possible mechanisms behind the disorder. It is my hope that this research will encourage even more investigation into the hows and whys of PMDD, so that more effective non surgical treatments may someday be available to women who want to live a life unfettered by the agony produced by a maladaptive reaction to hormones.

While this research vindicates the subjective reports of those afflicted by PMDD, we still have work to do. This information must be distributed so that understanding of PMDD grows. Once broader society and the medical community reach a point of greater understanding, it will be more likely that women with PMDD will be taken seriously.

PMDD is a serious medical concern that merits serious medical treatment. Now we have research on our side.

 

 

Clarification regarding my PMDD-free post

I’m offering this post to clear up some misunderstandings related to my 2 Years PMDD-free post. I understand that the words I chose may have facilitated the misinterpretations that some people had of the piece.

My first priority is to advocate for more research into PMDD. I would very much like for non-surgical treatments or cures to be made available to women with PMDD so that we do not have to resort to surgery. But with that being said, presently, hysterectomy and bilateral oophorectomy is the only known permanent cure for PMDD, and I think that when a woman with PMDD requests surgery, her request should be taken seriously.

I don’t think hysterectomy is desired as a first line treatment by many or perhaps even any woman, and I am not advocating for ‘handing out hysterectomies’ or ‘ripping out uteruses’. I do think, however, that a woman whose very ability to live is being compromised by PMDD should be able to have an adult discussion with her treating physician about the possibility of surgery. I do understand that a hysterectomy is a major and irreversible surgery and like all major surgeries, comes with some degree of risk. I also understand that it is not appropriate for and cannot be undertaken by all women. I know that there are lots of factors to consider in such a decision. I would hope that any capable physician could address these issues and concerns when meeting with the patient affected by PMDD.

I also never stated there was a definitive link between autism and PMDD. There is no research into correlation or causation between autism and PMDD that I am aware of, which is why I characterized my discussion of it as anecdotal. The possibility of an underlying shared mechanism between autism and PMDD crossed my mind after numerous discussions I had with other women who are both autistic and affected by PMDD. I never said it was scientific. I am asking for studies to be conducted to prove or disprove a relationship.

The same thing applies to my question as to whether PMDD is an expression of an autoimmune process. It’s a question that has crossed my mind, I can offer no evidence in support of my hypothesis. I said that clearly. I would love for research to be conducted to determine whether my thought process is correct.

The bottom line is I want more research so that women with PMDD can have more options for treatment. I want women who complain of PMDD to be taken seriously by their health care providers. And I want women who do ask for hysterectomies to be treated as autonomous decision making adults who are capable of having a discussion about the pros and cons, and risks and benefits of hysterectomy with the physicians who are treating them.

I would actually be delighted if any or all of my speculations about PMDD causation were proven wrong, because that would mean that someone is actually doing some research. I want women with PMDD, both neurodivergent and neurotypical, to be able live the lives they envision for themselves. I want women with PMDD to have their happiness and equanimity restored, but more critically I want the women with PMDD and their families to no longer fear losing women to preventable suicides. I want the medical community to take the complaints of women with PMDD seriously. If those things happened and every single thing I’ve ever said about PMDD turned out to be wrong, I’ll be overjoyed.

Typed word hormone overlaid with word progesterone

Why I’m Not Celebrating 2 Years PMDD-Free

On December 24, 2014, I had a hysterectomy and bilateral oophorectomy that cured the PMDD I had been fighting for almost a decade. PMDD stands for premenstrual dysphoric disorder, which is a hormone based mental illness with extreme manifestations and consequences. PMDD is a beast that can transform the most healthy and loving minds into wicked and self loathing shells of consciousness. And it works that evil like clockwork, each and every month.

So why aren’t I celebrating my freedom from PMDD? My peace and equanimity have been restored. I no longer take any psych drugs. My only prescription is estradiol as a hormone replacement. I love my husband again. The crying fits are over. My motivation is restored. Suicidal thoughts are nothing more than a dark memory that lives in an ever more distant past.

I’m not celebrating because so many of my sisters are still stricken by this disease. They are pleading with general practitioners, OBGYNs, and psychiatrists for access to effective treatments. Yet they remain unheard. My sisters are remanded to the care of mental health professionals who ply them with therapy and scripts for SSRIs, SNRIs, and benzodiazepines, none of which offer long term relief from the horrors of PMDD.

Why are we still suffering when there is a cure? A hysterectomy and bilateral oophorectomy, a relatively inexpensive surgery that rarely has major complications can permanently end our monthly misery.

I think there are many answers to the question above. First, many practitioners of medicine do not take the complaints of women seriously. Studies show that women’s reports of pain are commonly dismissed by physicians and women’s reports of disease processes are written off as psychosomatic.

This happens in the face of other studies that demonstrate that women, especially those of childbearing age, are affected by hard-to-diagnose autoimmune diseases at a much greater rate than men. Medicine has a very long history of ignoring the legitimate complaints of women. We are frequently handed psychiatric diagnoses before we are offered lab tests or diagnostic imaging.

Many ailments that were once thought to be psychogenic are now known to have a physical genesis. It wasn’t until the 1980s that h. pylori was demonstrated to be the mechanism behind peptic ulcer disease, which was previously blamed on stress. The 1980s also unveiled the etiology of Lyme disease. In the more remote past, epilepsy and Crohn’s disease were also once thought to be psychogenic.

The etiology of PMDD is not yet known. I suspect it is autoimmune in nature and is somewhat akin to an allergy to progesterone. But that is simply anecdote at this point. Another anecdotal observation I have made is that PMDD, dysmenorrhea, and other symptoms of hormonal disruption or intolerance are very common among women on the autism spectrum.

In medical terms PMDD seems to be commonly co-morbid with autism. But we autistic women are still fighting for recognition because there is an ongoing misperception that autism is a condition that almost exclusively affects males. Autistic women, particularly those of us born before the 1990s, are commonly misdiagnosed with bipolar disorder or borderline personality disorder before reaching a point of accurate diagnosis. Obtaining effective health care as autistic women is an uphill battle that is especially steep and discouraging.

If research into PMDD continues to be set aside because it remains classified as a psychiatric disorder, most theories of PMDD causation will remain anecdotal. And in the meantime more women will lose their quality of life or in some cases their actual lives.

Women affected by PMDD are discouraged and sometimes outright barred from access to the surgery that can cure us. Many physician’s perspectives are still so paternalistic that they do not believe we should be granted the freedom to part with our reproductive organs, even if those organs are destroying us.

We’re up against a lot in the effort to bring attention and research to PMDD. We’re up against a culture who’s instinctual reaction to perceived ‘new’ diagnoses is gaslighting, which is the systematic repudiation of the report of the afflicted person, no matter how legitimate that report may be. Couple this propensity to gaslight people with ‘new’ disorders with a low regard for the credibility of women’s reports to their health care providers, and it starts to look like we have a very long and difficult road ahead of us in terms of awareness and research.

We also face proponents of toxic femininity, who tell us that PMDD is a cultural myth so that they can promote a fantastical feminine ideal where female hormones play no role in disease processes. I’m sure that all of the women with polycystic ovarian syndrome and endometriosis, syndromes that are also frequently co-morbid with PMDD, would love for that fantasy to be true, but unfortunately, it remains a fantasy.

So I’m not celebrating my 2-year anniversary of freedom from PMDD. I can’t celebrate while my sisters suffer. I will continue to use my small online platform to advocate for recognition of and research into this disorder, because our complaints are valid, and we cannot remain unheard.

Word equality above bar on screen that is loading but not yet fully loaded

Let’s Talk About Privilege and Disability Again

Recently I was in an online disability discussion forum for disability X. One forum member, who I’ll call Jane, chided the other forum members for not contributing more money to a fundraiser that was underway to fund efforts to find a cure for disability X. Jane went on to say that finding a cure for disability X should be the biggest priority of everyone in the forum.

Now, disability X is never fatal in and of itself, but it can prevent you from working. From those premises I concluded that it was really messed up for Jane to be castigating people, many of whom can’t work and therefore have income limitations, for not donating more money that they may not have to fund a cure for a non-lethal health condition.

I realize that not being able to work may lead to death, especially in countries like the US, where financial assistance programs for disabled people are paltry or non-existent. That was part of my point. But I also realize that some people live with disabilities that not only prevent them from working, but can at any moment kill them in their own right. And people with those types of potentionally lethal disabilities are among the most cherished people in my life.

So, in what I now realize was a somewhat socially inconsiderate way, I responded to Jane’s post by reminding her that not all people with disability X can or should make donating a priority. I used a personal example and said something to the effect of, “I didn’t donate until very recently because I had to prioritize using my financial resources to help keep a friend from being killed by disability Y. I don’t agree with the assumption that donating to this fund should be everyone’s biggest priority.” I imagined that would be the end of it. Jane might agree, disagree, or ignore me, and life would go on, at least for those of us with non life threatening health conditions.

Imagine my surprise when the gates of Hades swung open and a flaming Facebook Messenger note landed in my inbox from the moderator of the group. I’ll call her Megan. I was told that my post had been deleted and a demand was made for me to explain why I’d thought it appropriate to berate Jane, who’d generously offered to match donations for the fundraiser. I responded with something along the lines of, “I didn’t berate Jane, but I wrote what I did because her post reeked of financial privilege.”

I was somewhat unprepared for the intensity with which hellfire and brimstone can scorch a person’s laptop. Messenger continued to rain down a cascade of flaming messages from Megan castigating me for using the word privilege and again accusing me of berating Jane, who was characterized as a benevolent, generous, selfless matching donor. Megan told me that a discussion of privilege had no place in that disability forum. Megan even threw in a Joyce Meyer quote admonishing me to not take offense if offense is given. Ha! I’d never heard of Joyce Meyer before. But a quick Google search revealed to me that she seems pretty big on blaming individuals for having sane human reactions to injustice issues.

And that’s where this blog post really jumps off. Because I absolutely disagree with M that a discussion of privilege doesn’t belong in a disability forum.

According to the Cornell University 2014 Disability Status Report for the United States, the poverty rate for people with disabilities is 28.1%, while the poverty rate for people without disabilities is 12.2%. Since poverty affects more than 1 in every 4 disabled persons in my country, I think that discussions of poverty and privilege in disability forums should be front and center.

Megan had reacted to the word privilege like it was the dirtiest obscenity that I could’ve written. Megan even challenged me to point out how privilege had supplanted Megan’s hard work and resulting presumably stable financial position. (I hadn’t actually presumed anything about her financial status, but she acted like I thought she was wealthy.) Now I hadn’t been talking about Megan at all, but once the pesky P word came out, Megan sure took it personally.

There are a lot of misunderstandings about the P word, and it’s usually most misunderstood by those who benefit from it.

Having privilege does not necessarily mean you are a bad human being.

Having privilege does not necessarily mean you haven’t worked hard for what you have.

Having privilege does not necessarily mean that you are an oppressor.

But you can have privilege and be bad, lazy and oppressive. And you are way more likely to be any or all of those things if you refuse to acknowledge your privilege.

I have privilege. I have financial privilege, which is basically privilege by proxy because of my well paid spouse. I have privilege because I live in a mostly safe neighborhood. I have privilege because I’m educated. Although I am a person of color, I have privilege conferred to me by my light skin. I have privilege because I’m a native speaker of English in a primarily English speaking country. I have yet more privilege because the way I speak English is considered ‘standard’ as opposed to being regional or of a dialect associated with a minority group. I could go on and on, because I’m really a very privileged person.

Nothing in the paragraph above means I haven’t worked my ass off. I went from homelessness to college graduate largely due to my own efforts. I’m a sexual assault and child abuse survivor. I’m a medical abuse survivor. I’m autistic. I have severe hyperacusis. I also have severe central auditory processing disorder, which makes me functionally deaf in situations where there’s background noise. My life has not been easy. But my privilege exists despite the reality of any of those things.

Acknowledging my privilege is acknowledging that even though I worked my ass off, and it has been a damned hard road, that I still have or had qualities that removed from my path some of the obstacles that may stand in front of others. Despite my hard work I will never tell another person who has faced different or even the same obstacles that they should have ended up where I am, in a place of privilege. Because that’s bullshit. It’s demeaning, and it’s wrong.

Now I realize that distinguishing disabilities into categories of immediately life threatening and not immediately life threatening is a delicate thing to talk about. Like I said, if you can’t work, you might very well die. My point isn’t to create a hierarchy of disability badness and divide the disability community, but rather to point out that there are lots disability dynamics worth discussing, rather than ignoring.

All people involved in creating or advocating in disability forums need to be open to discussions about how some of us are dying because we don’t all have access to the same resources, regardless of how hard we’ve worked or would be willing to work if we could.

Looking back, I don’t think necessarily think Jane meant to make anyone feel terrible, but I can’t be sure. I certainly don’t think my response berated Jane. It wasn’t my intent to berate anyone. I intended for my response to prompt thought and reflection on the potential impact Jane’s words might have on disabled people who can’t work or don’t otherwise have financial resources and therefore can’t offer donations. If I could write it again, I would word it differently. I’ll be the last person to claim to have never typed anything insensitive. So while my choice of words may have been less than ideal, I stand by my sentiment. Discussions of privilege in disability forums should be central, rather than censored, because some of us are dying out here.

An Open Letter to Special Needs Parents

Hey you! You with the blog that walks through the everyday challenges you face with your child. You who writes passionate pieces that call for an understanding of your child’s unique needs.

I need to talk to you.

I am the type of person that your child may become in the next few decades. I am a neurodivergent adult navigating the multitude of challenges that exist in a world that has a long way to go to before achieving a full level of acceptance of those with brain differences. You and I need to work together to educate and inform. We need to work together to make the world more welcoming for your child with autism. For your child with sensory processing disorder or auditory processing disorder. For your child with ADD or ADHD. For your child with anxiety or panic. For your child with any of a litany of experiences that place him or her outside of the neurological mainstream.

I have walked a path similar to the one your child is walking now. I’ve walked it since 1975, when the diagnoses I listed above were unknown or even more poorly understood than they remain today. I walked it without a mother or father like you who held my hand or picked me up when I stumbled. I walked it alone, sometimes confidently, and sometimes cautiously.

I was graced with moments when people outside of my family, people who I now think of as precious gems, offered me safety and security, however briefly. I was cursed by times when I struggled unsupported and almost lost my life. Worse yet were the times when I failed myself by losing hope.

We need to be allies, but I am saddened that many times we seem to be at odds. When a look of horror crosses my face as I turn up the red noise on my noise cancelling headphones and run from your child as she screams in the grocery store, don’t assume I’m a callous jerk. When I force back tears and grit my teeth as your child melts down at the pharmacy, don’t call me evil for wearing a look of displeasure before I am forced by the noise to depart without my medication.

I want very much for your child and I to be able to share the same space. The same stimuli that torment your child, causing him to cry and wail, hurt me just as much. Please protect your child. I know there will be trial and error. You will have to experiment with sunglasses, ear muffs and ear defenders, and various sensory objects. Please keep trying. The pain that your child has undergone by the time they reach the point of the 110 decibel meltdown that drives me back to my home is a pain that you simply cannot fathom.

I am your ally. I am the person who will ask the store manager to turn down the music. I will ask the receptionist at the doctor’s office to turn down the television. I am the person who will give you a crash course in creating quiet. I am the person who will answer questions about why certain things hurt sensory sensitive people in the ways that they do. I am the person who can offer survival strategies for an unwelcoming world. I am also the person who can only risk going to Target or the grocery store once a week, because my noise cancelling earbuds can’t block all sounds, and a single encounter with a 110dB shriek can ruin my cognition and concentration for the rest of the day. With sound of prolonged intensity and exposure, I can become completely non-verbal.

I have to delegate my sensory risk taking and my energy expenditures, as does your child. So please understand, if in a moment of hurt you see a look cross my face that is less than kind, it is because I am reaching as deep as I can into my heart for compassion for you, while in the midst of great pain and the rapid onset of immense confusion. My expression may be strained as I try to balance finding empathy for your child and respecting my own need to protect myself.

Please understand that we all belong together in this world, and we must share the same roads. Should we pass one another, and our needs seem to be in conflict, it may be because my needs and the needs of your child are actually the same. We are united by experiences, and only separated by age.

Auditory Processing Disorder, What does it Mean?

As I explained in my last post, I was liberated by my Auditory Processing Disorder (APD) diagnosis. Of the 4 types of APD – Decoding, Tolerance-fading memory, Integration, and Organization, I have been confirmed to experience 3. My audiologist states I experience issues with Decoding, Tolerance-fading memory and Integration. He states he cannot rule out Organization as a potential component as well.

Post liberation, I find it easier to communicate with people because I can ask for conditions that facilitate my ability to hear and understand speech such as a quiet environment and seating where I can lip read. But people wonder: What was I hearing before?

Let me explain.

Have you ever used speech to text on your smartphone and watched the screen as the program sorts through multiple potential words and spellings until it accurately or inaccurately decides what you were trying to say?

That’s how I hear. It’s almost like Siri and I were separated at birth.

When I hear speech, I sort through multiple potential spellings and meanings and try to match the vague sounds I hear to the context of the conversation. I picture the potential spellings of words in my head nonstop to aid in my understanding. I think of this visual spelling habit as my internal closed captioning system.

I hear sound just fine, but individual speech sounds are very indistinct. When a word starts with the letter P for instance, I simply don’t hear the P. You say the word ‘play’, and I hear ‘lay’. You say ‘piece’, I hear ‘ees’. Well, I hear ‘ees’ if I’m lucky and there’s no background noise. Add background noise to the equation and I’ll only hear a long e  or ‘ee’. That’s a hell of a lot of English words to sort through to figure out which long e word you were using.

Okay, you may be thinking. That’s not that big of a deal, you obviously know people aren’t saying ‘ees’ or ‘ee’ to you, right? Just pay attention and you can sort it out.

Well, compound what I’ve described with other phonemes that challenge me and it becomes more problematic. I can’t hear most L sounds correctly. So ‘puzzle’ becomes ‘uzza’ because both P and L are involved. Imagine playing a game of hangman or Wheel of Fortune when you only have a few letters. That is what auditory life is like for me. I only managed to get this far because I have tremendous puzzle solving skills. Once you understand these dynamics, it is easy to understand how people with APD and fewer problem solving skills remain nonverbal.

In a face to face situation with no background noise I can supplement my understanding with lip reading and get by. On the phone I have no such benefit. You can see how I might fall behind in conversation as I’m trying to sort out sounds and the person to whom I’m speaking is just rambling on full speed ahead as people are prone to do.

Think about the multitude of unnecessary words you sprinkle into phone conversations. Think about the noise behind you when you use the phone. Is there music? Are you sitting at a table where others are having a conversation? Are you in a loud office environment? Are you alternating speaking to the person on the phone and also speaking to someone in the room with you? Ever turn your head from the phone to yell at your kid who was already screaming in the background? And God forbid, are you using the freaking speaker phone?

Now imagine someone like me on the other end of that phone conversation. I already didn’t stand a chance hearing 50% of what you said without visual context clues. Now you’ve just reduced my understanding to 20% or even 10%. I will probably ask you to repeat yourself, and you will probably become impatient and annoyed with me. You will think I’m not paying attention and when you later learn I have completely misunderstood something you said, you will assume I am stupid or that I suffer from a refusal to follow directions.

Think for a second about the social ramifications.

I have been absolutely shamed for my inability to hear, even in places where one might think people are peaceful and enlightened.

I once took a yoga class at a local community center. I had not yet been diagnosed with auditory processing disorder. When I arrived, the only spots left were in the back of the room, quite far from the instructor. Each time the instructor asked us to change asanas, I looked at the mirrors and at the movements of my classmates to understand what I was supposed to be doing. I simply couldn’t hear the instructor. I got through the entire series of classes that way and I really enjoyed the yoga experience.

After the last class, many of the students stuck around to thank the instructor and ask her where they could take more classes. The young woman in front of me told the instructor that she had enjoyed the class but that she preferred to be grouped with advanced practitioners in a private studio environment because she found it irritating that the community center had mirrors and that some people, she said while giving me a hard glare, were always looking at the mirrors and at other students instead of focusing on their own practice. I can hear tones perfectly well and her voice was full of contempt.

I felt so ashamed. I had been waiting in line to tell the instructor how much I had enjoyed the class and I had instead learned that this other student had been horribly offended by the efforts I had taken to follow the teacher’s verbal instructions. I turned and left the room after that woman spoke so cruelly, and it took me years to attempt a yoga class again. I knew I couldn’t participate without using visual cues, but clearly that pissed off other students. I didn’t know how else to get through the class, and I didn’t want to anger another practitioner.

I think of the many times I tried speaking with people I didn’t know well, usually coworkers, when they quickly verbally digress in a direction that I can’t follow. I try my best to keep up and I simply can’t. Before I know it they’re yelling at me. “It was a joke!, Don’t you get it?” It becomes clear that I’ve missed a cue, but I don’t understand what cue.

And I respond by smiling like I understand, just to try make the situation smooth again, but they can tell I didn’t understand at all. Their humor then turns to anger and they begin to berate me. “Don’t you have a sense of humor?” “Always so serious!” “Lighten the hell up!” Then they mutter something about what an idiot I am and walk away. This has happened more times than I can count. It sums up my entire working life.

I remember a Thanksgiving dinner at the home of my stepfather, who due to crazy family dynamics, I had not seen in several years.

“Do ya ha any is?” he asked me. There were lots of people at the dinner and the echo prone raised ceilinged home was filled to overflowing with voices.

I had been staring at his mouth, trying to sort out what he was saying. But I simply couldn’t figure it out.

“Do I have any keys?” I guessed back to him. I knew he was a car enthusiast, maybe he wanted to see what I was driving.

His brows lowered and his expression darkened. I was familiar with this disapproving look from my childhood. It was the look he had given me when as a kid I, “just wouldn’t listen.”

“Do you have any kids!?” he blasted back.

“Um, oh, no,” I replied as my face reddened. I really didn’t like making people angry.

These are examples of the things I hear, or rather don’t hear, and their real life implications for social interactions.

I hope this has shed some light on one presentation of auditory processing disorder. I further hope it encourages you to be patient with people who ask for repetition or exhibit misunderstanding. You can never presume that the person to whom you are speaking hears as you do.

On Diagnostic Labels

My writing sometimes explores dynamics involving my disabilities. I live with both hyperacusis, which is an abnormal sensitivity to everyday sounds, and auditory processing disorder, which makes me functionally deaf in multiple environments including those with multiple speakers, background noise or echoes. It also interferes with my ability to remember anything that is shared via speech. Writing about my experiences as a person living with auditory disabilities has sparked some interesting conversations. One such conversation is about the issue of disability labels.

I see the idea of disability labels as somewhat analogous to racial and ethic descriptions in some cases. The labels I see as analogous to racial descriptions I will call benign disorders as they are conditions that are statistically experienced by a minority of people, but are compatible with life. In other cases disorders are things that must be treated or cured in order for life to be sustained. These I will call malignant disorders. Malignant disorders are those that if left untreated, are incompatible with life.

Our challenge is to understand that not all disorders are or should be treated as malignant.

People who live without auditory processing disorder have expressed discomfort and even hostility towards my use of that diagnostic term to refer to my inability to hear in certain situations. I’m guessing it is the word ‘disorder’ that sparks their discomfort, as I’m not aware of any such disdain being levied towards people who identify as hard of hearing, who likewise can’t hear well but have different mechanisms behind their inability to hear. The critics of labels vaguely posit that society would benefit from considering each human as an individual with different capabilities and honoring each person and their needs accordingly, while leaving labels out of the equation.

I disagree.

Let’s examine what a label is. Dictionary.com offers the following: a word or phrase indicating that what follows belongs in a particular category or classification.

It seems that the purpose of a label is descriptive, it helps identify a category in which something belongs. That doesn’t seem bad to me. I like knowing where things belong. But in life outside of the dictionary we have to look at how labels are used.

I think back on some of the labels that have been applied to me. Among them are: stupid, smart, crazy, sane, emotional, analytical, thin, fat, overachiever, underachiever, poor, wealthy, female, straight, dyke, nigger, white bitch, professional, unemployed, educated, ignorant, single, married, healthy, sick. There are many more than I can list here.

But you notice the contradictions?

All of the labels have been applied to me at some point when the person applying the label thought they had enough information about me to place me in a category among others who they thought also belonged there. Some of the labels are considered complimentary, some are considered slurs. Some of the labels were applied to me in the past and no one would think to apply them now. Others are a matter of perspective. To a person with no roof over her head, I may appear rich. To a billionaire I probably appear poor. If we think of the implications of rich and poor beyond the financial, a person with more friends might call me poor and a person with no friends might call me rich.

It’s clear that sometimes labels are contextual and subjective. Sometimes they’re nothing more than insults. Sometimes they can be confidence boosters. They can prompt feelings of hurt or inspiration, shame or motivation.

But what about diagnostic labels? Do they work the same way? What happens when we contrast historical diagnostic labels with current diagnostic labels?

Epilepsy, anxiety, paralysis, developmental disability, Hansen’s disease, non verbal, schizophrenia.

Falling sickness, hysteria, lameness, retardation, leprosy, dumb, madness.

We see the contemporary labels as more descriptive and less demeaning. But do the new labels help us see the whole person?

No.

But that is not a problem with the label. That is a problem with how we react to hearing a brief description that we call a label. We need to get beyond the philosophical error called the false dichotomy or false dilemma that presents when we hear labels, especially those involving the word ‘disorder’. The false dilemma posits that there are two available categories and you must choose from among them. In actuality, there are far more categories or options than those being presented. The false dilemma rears its head when someone asks you if you are voting for red or blue and ignores that purple is a candidate that you might like to consider.

A false dilemma becomes even more dangerous when not only do you believe that there are only typical states and disordered states, but that disordered states must be malignant or inferior. This is not a problem with the label typical or disordered, it is a problem with thinking this category of disordered is smaller or more restrictive than it is.

I have experienced two things labeled disorders that have profoundly affected my life.

The first is PMDD or Premenstrual Dysphoric Disorder. PMDD is a mood disorder associated with hormones. Having PMDD meant that for two weeks out of every month I’d become severely depressed. My sleep was disrupted, my personal insight became distorted, and my energy level was diminished.

Sometimes I wanted to die.

I do think suicide is logical and possibly appropriate in some cases, such as when a person is terminally ill. But monthly ovulation is not a terminal illness. It’s a normal part of being a biologically female human between the stages of puberty and menopause. So wanting to die because of ovulation is not a typical response. It is a disordered response. A malignant disordered response.

The other disorder I’ve been affected by is Auditory Processing Disorder. For my entire life I’ve had difficulty hearing and understanding spoken language a great deal of the time. I didn’t have access to health care for most of my first 28 years of life so I didn’t discuss the problem with a physician or audiologist.

I’ve known my whole life that I’ve had trouble hearing and understanding speech. But I’d also been told for years that my hearing was fine and that I just needed to pay attention. But I was paying attention.

People with APD can hear sound just fine. We just have difficulty getting meaning from speech sounds. There are generally agreed to be four subtypes of APD, and I have three. The three I have are: decoding- which is the ability to quickly and accurately process speech, tolerance fading memory- which is understanding speech in noise and short term auditory memory, and integration, which means unlike an audiotypical person, I have no binaural symmetry. Therefore the input from my right ear does not match the input from my left, and when the two signals meet in the middle in my brain, my brain has to do more work to sort out the meaning of the signals.

Working with my audiologist has taught me that I simply do not hear some sounds at all. I cannot tell some words apart, even when they are spoken to me clearly and distinctly with no background noise.

I had this going on for my entire life but was told by the audiology tech at student services that my hearing “fine”. I still experienced the day to day fact that I could not get as much information from lectures in a classroom as I could from reading a book.

And I didn’t know why.

I experienced the reality that I had an incredibly hard time speaking up in classes and groups, because I couldn’t figure out how to interject or be sure I was on topic.

And I didn’t know why.

I experienced the reality of having to be guilted into going to gatherings I didn’t want to attend because I was tired of being unable to participate in conversations involving more than one person, or even one person if there was music or other noise in the background. I experienced giving up on speaking entirely in many environments because I could never seem to respond appropriately. I was tired of being mocked, tired of being labeled antisocial, and tired of being called a stuck up bitch because I could not socialize properly.

And I didn’t know why.

These experiences made me lose my voice. I stopped trying to talk so that people would stop ridiculing the off topic things I said. I stopped talking and started smiling instead, I felt it was the best I could do. But that led to other conclusions about me.

I started being asked things like, “Are you just gonna stand there and look pretty?” I got called things like “grinning idiot”.

I started to believe erroneous things about myself too. I began to think that social anxiety was my problem. I didn’t know of anything else that could explain my inability to function in groups. I spent money on therapy that didn’t help. There was no shortage of therapists who accused me of various dysfunctions I didn’t have, all the while overlooking my disability.

Not knowing I had an auditory disorder led me to believe I was dumb. It led me to believe I was an academic fraud, despite my ability to synthesize ideas through reading and writing. I was told on one hand my hearing was normal or typical, but my experiences said otherwise and it was seriously impacting my functioning.

Receiving the diagnosis of auditory processing disorder is one of the most liberating experiences I have ever had. It created context and clarity for my perceptual differences.

Now that I understand how my brain and ears work, I can take effective steps to address my differences.

The label hating critics assert that each learning style should be respected individually. That’s a charming goal, but you have to be able to identify what a style is before you can cater to it. Before my diagnosis I couldn’t understand that I learned differently. I was left to conclude I lacked intelligence. I couldn’t have reached out to an instructor and asked for an accommodation that I didn’t know would benefit me.

Now that I  have a diagnosis I understand myself and my brain like never before. I am embracing my functional deafness and learning American Sign Language. Before my diagnosis I only had the choice of opting out of presentations and lectures, or hearing bits and pieces of what was said. With ASL, I can fully participate where I was never able to before. In smaller groups I can simply ask for people to refrain from speaking over one another. I can ask for acoustically preferential seating because I know it helps me.

Through these mechanisms I regain my voice in forums where I had been silenced.

I get why people don’t like the word disorder. It can be stigmatizing and separating. It can tempt people to divide other humans into the typical and the malignantly disordered and forget that there are millions of experiences in between that should be accepted as part of human diversity.

That is not a problem with the words typical and disordered, but rather a problem with believing in a binary when there is a spectrum. All of human existence is on a spectrum. Many health conditions are on a spectrum. Some require certain medical interventions, some are just diverse ways of presentation that require no medical treatment, only respect for and understanding of our differences.

This issue of labeling is very similar to discussions of descriptions regarding race. All educated people know that race is a social construct, but only the most foolish of us believe it follows from that fact that racism is non-existent. Social constructs matter in the here and now. To assert that society would be better off if we ditched disability labels is analogous to making declarations that we should all be ‘color blind’. It’s naive and hurtful. It is an absurd view embraced only by the most insulated and privileged or the most vicious and demeaning. It rejects the distinct experiences associated with certain ways of experiencing this world.

Other is not bad. Other can be beautiful.

I couldn’t have taken the same position towards my PMDD as I do auditory processing disorder. Believe me, I tried. I tried to accept that I had different moods than many other people for two weeks out of every month. I accepted I was different. But if you accept something that is going to kill you, you may not be stigmatized but you still end up dead. If you have tumor and prefer to think of yourself as ‘experiencing cancer cells’, and reject being labeled a ‘cancer patient’ you probably still die if you opt out of treatment.

Maybe all we need to do is to distinguish between malignant disorders and benign disorders. Until then, I think we should accept that disorders are not necessarily red or blue, and that we are free to vote for purple.

 

Man with clipboard next to air conditioning unit

If Somatization Disorders Existed Outside of Medicine

Like many couples, my husband and I have different ideas about what constitutes an optimal household temperature. I’ve gotten through entire summers without using the air conditioner more than a handful of times. My husband Alec, on the other hand, becomes very uncomfortable at any temperature above arctic blast.

Lately we’ve been having temps in the high 80s Fahrenheit, with humidity ranging between 70% – 90%. I still sit happily without A/C. When my husband comes home from work, he’s near the point of drawing an ice bath to avoid bursting into flames.

Saturday, after he got home from his second job, he opened the front door and dragged his partially liquified body directly to the thermostat. He punched down the dial and air started to blow. He waited impatiently. His pained expression said that segments of his very soul were being boiled from his body by the Kansas heat. The A/C unit turned on, and air started to blow through the vents.

He sighed with gratitude and headed upstairs to change clothes. A few minutes later I was startled by his shouting.

“This damned air isn’t even blowing cold!” he exclaimed.

Thank goodness! I thought. Usually when he turned the air on my skin turned blue and my fingers stopped working. I forced a troubled look instead. “Oh no. I guess we’ll have to call the service people,” I said.

I could see that the heat had permeated the essence of his civility. Action had to be taken before he was completely devastated by his sweltering surroundings. Unfortunately, a holiday weekend intervened and the heat continued unabated. My miserable, melting husband was surely on the brink of death! He somehow survived the ordeal and made it back to the air conditioned haven of his cubicle on Tuesday morning.

I met the A/C repairman, Eric, at the door this morning. Eric introduced himself cordially. He wore neat little booties to protect my not so meticulously swept floor from dirt and footprints. He inspected the air conditioning unit, twiddled with the thermostat, flipped things in the furnace room and reset breakers.

He pronounced his findings with confidence. “I’ve checked everything. I don’t see any problems. You have to keep it on during the day to keep the humidity low,” he said. “How cold were you trying to set it?”

“Um, I think my husband was trying to set it around 65,” I guessed.

“Oh, well, it can’t do that. It isn’t meant to go that low. It could burn out,” he told me. “But it’s working fine. Just keep it on. If there are any issues within 30 days, give us a call and we won’t charge for another service visit.”

“Okay,” I agreed. Sounded reasonable to me. I paid the service fee and Eric drove off in his bright yellow van.

I read the medical record — I mean job order, that Eric had created.

System is working properly at this time. Capacities are within tolerance. Refrigerant level is ok. Recommend setting t-stat at 70 or above.

He had put it so kindly, but it was clear what had happened.

My air conditioner had Conversion disorder.

I dug through the previous diagnoses given to my unit by other providers.

Unit functioning, but has exterior damage caused by lawn equipment. Also, disconnect has broken leg – had to use plyer’s (sic) to kill power.

Surely Eric had seen these things. He must have been too sensitive and considerate to mention them. He was truly a compassionate serviceman.

About five years ago, something had happened to my A/C unit that would change its life forever. While trimming the edges of my yard, I’d accidentally sliced into the casing of my A/C’s exterior. I was horrified by what I had done. The weed eater slipped from my hands as I considered the scene of the crime.

Had I broken it? Didn’t they cost thousands to replace? How should I tell my husband?

I didn’t even consider the emotional toll that kind of trauma must have taken on the air conditioner itself. But clearly it had suffered in silence. After all of these years, it continued to live in the yard, uncomforted, and with its wounds untreated. Until this fateful spring, when the burden of cooling the home of its abuser simply became too much. Its deep seating feelings of inadequacy and self doubt had affected its ability to simply sit back and chill. Eric had used the words burn out. Surely my unit was doing just that.

Thankfully Eric had done what had needed to be done. While he stated he couldn’t find a physical reason for my unit to be non-functioning, he’d spent a good deal of time at the side of the house with it. I had assumed he was inspecting parts, but I know now he was engaging in Dialectical Dehumidification Therapy with my traumatized unit.

I appreciate how he didn’t confront me about my unit’s trauma. My guilt was already profound. I’d thought I had gotten away with it.

What happens in the side yard stays in the side yard.

Or so I’d hoped. Eric wrote up the ticket in a way that assigned no blame. Right now my A/C is quietly purring, and I feel the cool air puffing from the vent across the room. I know now that all appliances can heal. They just need the right encouragement.

Update: The A/C experienced complete mechanical failure a few weeks later because Conversion disorder is very rarely the real problem, it’s merely a strategy employed by incompetent service people or physicians to blame the victim for diagnostic shortcomings.

The Real Cost of Healthcare Pt 2

Our friends Dana and Andrew followed up with Dr. Boneanmussle, to find out if anything could be done for Andrew’s neck and shoulder pain.

Dr. Boneanmussle strode confidently into the room. He was a stocky man who looked like he had spent a lot of time in the gym when he was younger. He cordially introduced himself to our couple and launched into his presentation.

“I looked at your bone scan,” he said. “Now keep in mind bone scans are virtually useless studies. I think Dr. Neurosurgeon ordered it to politely make you go away. I do see an area of some density on the scan, but it tells me nothing. You need to have a shoulder MRI.”

He went on.

“I’ll look at the MRI myself, because let me tell you something,” he continued. “Fifty percent of radiology reports are wrong. That is they miss things. Lots of doctors rely on the opinions of radiologists who do a half assed job and then end up sending their patients away telling them it is all in their heads. I’m not that kind of doctor.” [I ask you reader, to contrast this with Dr. Jape’s statement about trusting radiologists in a previous post].

Now I believe that when Dr. Boneanmussle said 50% of radiology reports are wrong, he wasn’t drawing from any legitimate statistic, but rather using a number that he thought reflected his experience as a shoulder specialist reviewing x-rays and MRIs. Whether this statistic applies more broadly isn’t really important here. Dr. Boneanmussle’s perception is important.

So Andrew went for an MRI.

Andrew and Dana returned, and Dr. Boneanmussle invited them to look at the MRI images with him. Boneanmussle was good, because despite the poor resolution on his Dell laptop, he identified problems with Andrew’s shoulder. He recognized some bone spurs, which he said may or may not play a role in the pain Andrew was experiencing. He also identified significant inflammation that may have resulted from past trauma Andrew had experienced in that area following both a car accident and athletic injuries. He offered Andrew treatment options: steroid injections into the site of inflammation, physical therapy, surgery to open the site and get a better look at what was going on, or to take no action and be referred to pain management for more drugs.

Andrew opted for the injections. Dr. Boneanmussle performed them right then and there. Andrew now reports about a 40% reduction in pain and a significant increase in mobility in the weeks following the injections.

This is all very interesting because Andrew had been complaining of neck pain for about a decade. He primary care doctor simply ordered neck MRIs that came back negative, and gave him pain meds. After about 8 years of pain meds, Andrew was done taking pills. He got two opinions from neurosurgeons. One visit is recounted in http://www.athinkingpatient.com/commentary/the-real-cost-of-healthcare/. His other visit to a neurosurgeon consisted of the doctor first telling him there was nothing visible in the MRI of his neck and then immediately inquiring about Andrew’s stress level. Because instead of considering the possibility of referred pain from a mechanical shoulder problem, the neurosurgeon went straight to at the possibility of psychological causation.

Dr. Boneanmussle ended up spending about 15 minutes reviewing the images with Andrew and Dana and counseling Andrew on his options. He spent about 8 minutes injecting the methylprednisolone into two sites in Andrew’s shoulder and inspecting the results. Andrew’s insurance was billed $135 for the 15 minute counsel, $213.00 for performing the injection, and $40.00 for the cost of the methylprednisolone from the pharmacy. This totaled $388.00. His insurance negotiated payment to $153.25.

From arrival to checkout, Andrew had spent about 30 minutes in the office. He had a 40 minute round trip drive to the office. So his net income loss for the visit was around $44.00. Andrew was given information and treatment options. He was given treatment at the time of his visit that proved to be effective over the following weeks. Andrew has no complaints about the cost of the solution to his shoulder problem. Even if Dr. Boneanmussle had not been able to treat the problem on the spot, Andrew would have been content with paying for the amount of insight he had been given into the problem.

This, my friends, is how doctoring should be done.