Disability and Privilege

Sometimes even physicians look at me askance when they realize I am on disability. I’ve been given stares of absolute contempt and disgust by front office staff and nurses when they see my Medicare card. Audiologists and neurologists understand what I am going through. But some doctors outside of audiology and neurology have a hard time understanding why my auditory processing disorder or APD and hyperacusis render me unable to work outside of my home.

These physicians are wrong and right in their presumptions about my abilities. In certain ways I am very high functioning and capable of completing tasks found in some workplaces. In other ways APD and hyperacusis make it impossible for me to function in the professional capacity I used to.

I can think and problem solve very well…if the environment is completely silent. Ear plugs, ear muffs, and noise cancelling earbuds do not block out all the sounds in an office environment. Since my professional experience is in insurance and financial services, I can no longer sustain employment there. Sound overwhelms my brain. I cannot tolerate or understand voices as you would find in a meeting or in a cubical environment. I cannot use the phone for over five minutes. I cannot tolerate environments with any music at any volume.

Any sound beyond a single voice that lasts for more than a few minutes can render me confused and unable to focus at best, or provoke a sleep attack at worst. Too much sound makes me struggle to find my words. My speech becomes choppy and inarticulate. My ideas become convoluted and distorted.

Conversations must be one on one and of short duration. I would have to miss work 1-2 days per week for doctor appointments, including ongoing therapy for my APD. I don’t know of any insurance or financial services company that could accommodate those needs and nuances. And then there are my numerous allergies. I’d also be out sick for my myriad and unpredictable allergic reactions, usually a few times a month.

But here’s the part where the doctors are right. I can work. I just need additional training so that I can return to the workforce in another field. I fully expect I will be off of disability and economically self sufficient within a few years. I absolutely can work from my silent and allergen free home as a writer. I am currently getting the education I need so that I can do just that.

But here’s the deal: Just because I will likely be able to return to economic self sufficiency does not mean other people on SSDI are less driven or motivated than me. I’m not a harder worker than other people on SSDI. I don’t have a different sense of “entitlement” than others on SSDI. I’m not in any way a better person than others on on disability. I am more fortunate and privileged than most others on SSDI.

Let’s first examine my situation with the situation of a friend of mine. My friend, “Doug”, is in his 50s. He has a high school level education. He had been a semi truck driver his entire working life. Our incomes were comparable when we became disabled. We both made in the upper $40s annually so our SSDI income is about the same. Doug became partially paralyzed. He uses a wheelchair on bad days, and walking sticks on rare good days for mobility. There is no way he can return to work as a truck driver. He could not pass a Department of Transportation physical. He did not have a spouse when he became disabled.

Despite his indisputable paralysis, he was denied benefits at the time of his initial SSDI application. By the time he was approved on appeal, he had a negative net worth due to medical bills associated with his illness and rehabilitation.  He was near homelessness. He stayed with barely sympathetic family.

Months later, when he got his SSDI back pay, he had to use it for bankruptcy attorney fees and housing. He had lost everything while unable to work and awaiting benefits so he had to use his back pay to start from scratch and get necessities such as rent deposits, furniture, and an old broken down car. He only has Medicare so he has to pay for 20% of his ongoing medical treatment. After those expenses he sometimes does not have enough money for food. In order for him to retrain for a desk type job, he would need reliable transportation to access educational opportunities, assistance getting his wheelchair in and out of his car to attend these opportunities, money for clothes, and a big assurance that age and disability discrimination won’t keep his efforts from paying off.

Contrast that with me. I became disabled at age 38. I have a bachelor’s degree level of education. While I was denied benefits twice, I was finally awarded them by a judge who approves less than 25% of the cases that go before him. The vocational expert at my hearing explained there exists no full time position that could accommodate my disabilities, “No competitive employment,” were the words she used to describe the positions in which I could work.

It is also remarkable that at the time of my hearing I did not have a diagnosis of either Auditory Processing Disorder or hyperacusis. I simply described my auditory experiences with confusion and wonder and had a stack of medical records from equally perplexed doctors outside of audiology who supported my description of how sound affects my functioning.

I was incredibly fortunate to have a spouse paying our mortgage the entire time I was disabled but not yet approved for benefits. While my medical bills did contribute to our filing for bankruptcy like Doug, we were able to keep our home and our two reliable vehicles because we had income.

I signed up for the Ticket to Work program within weeks of becoming approved for Social Security Disability benefits. I was able to drive my reliable car to meet with my Ticket to Work liason. As soon as I got my Social Security Disability back pay, I signed up for online writing and publishing classes. I got a new laptop to write with because my old one was dead. I bought a year of blog hosting. I also finally got access to the audiological treatment I need because the audiologists don’t take insurance for my treatment. They are private pay only at between $90 – $350 per visit. Despite my spouse’s income, I was unable to get audiological treatment before receiving my back pay. We were broke.

My financial privilege allowed me to use my back pay for classes, a computer, and medical treatment that many other disabled people would not have access to. I have a spouse who makes enough money to have kept us afloat when I lost my income due to disability. I also have my spouses’ private insurance policy in addition to Medicare. That keeps my out of pocket expenses for non audiological treatment low. I also had a type and level of education prior to my disability that will allow me to transition to another field. I don’t have to worry about buying food, so I can buy education and hopefully create my own opportunities.

I have financial resources that a small minority of people with disabilities have. That is privilege and that will help me succeed where others cannot.

There is a lot more involved than work ethic in understanding which people with disabilities can achieve economic self sufficiency. Please consider these dynamics before you judge the ability of a disabled person to work. Like most things in life, issues of working while disabled are more complicated than they appear.

And if you’re in health care, how about just not judging your disabled patients? If they are on SSDI and you are employed, you’re already living a better life than they are. Why on earth would you pile onto their challenges?

The Many Faces of Trauma

I have read many articles, both distantly and recently, about trauma. Every one postulates a negative outcome for the survivor that presents in terms of inevitable ongoing abuse, unhealthy relationships, addiction, and failure. The problem with these writings is that they deny agency. A trauma survivor becomes a bumbling mass of feelings incapable of rational decision making. A survivor is reduced to a walking limbic system doomed to interpersonal failure. What is inevitable is that trauma affects us. What is not inevitable is how we respond to its effects.

These concepts of inevitable failure hurt me as a trauma survivor. I was a prostituted child. My mother was a master of gaslighting. I witnessed the systematic executions of animals in my home as a teen. I am also a highly rational person. I partially attribute my hyper-rationality to my awesome second grade gifted ed teacher, who introduced me to logic puzzles. I have been fascinated by logic ever since. I pursued a degree in Philosophy so that I could study logic formally. If I was motivated by passion, it was a passion for set theory and symbolic logic.

As a traumatized adolescent, I also was exposed to Buddhist thought. I first read about Buddhism around age 12. That opened the door to me for more agency. I became aware through Buddhist texts that I had control over how I interpreted and reacted to stimuli and events in my life. From ages 12 to 17, the traumatic events and exploitation continued. I responded with analysis and reflection. I planned for a future. I planned for a life free of abusers. I evaluated the choices made by my abusers and took efforts to make different choices.

When I was in college in my early twenties, I was very aware that the interpersonal relationships I had observed and been forced to participate in for the majority of my life had been unhealthy. I made the decision to seek out people who appeared more healthy and functional and emulate their behaviors. I grew enormously from this experience of electing my own mentors. However, I still experienced certain visceral feelings that I knew were not beneficial. I would become confused in large groups of people and feel inclined to completely remove myself from the situation rather than think through other solutions to the situation. I had lots of difficulty with communication in professional settings. It turns out a large part of that was due to my persistent undiagnosed auditory processing disorder, but it was also due in part to my trauma history. Myself ignorant of my APD, I postulated the trauma as the sole reason for my professional interpersonal challenges and I sought out therapists to help me.

That is where I ran into an enormous problem.

The therapists looked at me and saw my well dressed presentation. They remarked on how well spoken I was. They asked about academics and found I was a high performer. They asked about relationships with boyfriends and found them to be affectionate and not abusive. They then dismissed me promptly from therapy, stating I was functioning just fine and telling me my childhood could not possibly have been all that bad. They never asked anything about my childhood. Time and again I would timidly assert that I thought some of the experiences I had undergone in my youth were holding me back. One therapist gave me a hard look after I said that and replied, “You look like the daughter of an attorney and an accountant, your childhood was fine!” She then dismissed me from her practice.

The only thing that is inevitable about surviving trauma is that you will be affected. How you are affected does not present in a single “inevitable” fashion.

The therapists I sought help from had one image of a trauma survivor. Their trauma survivor engaged in abusive practices as an adult. Their trauma survivor had substance abuse problems. Their trauma survivor had several children and a history of failed intimate relationships.

My survivorship didn’t look like that. Neither does the survivorship of many others who float well enough beyond stereotypes to be able to pass as “normal”. There are outwardly functional survivors all around you. You just can’t see them.

I had healthy personal relationships and high academic performance. But I struggled with asserting myself and speaking on my own behalf. I had night terrors and nightmares for over 20 years. I had very low self esteem that I hid behind false confidence. I knew these problems resulted from trauma. Time and time again I sought assistance, but I could get no professional help. I was dismissed from therapy over and over on the basis of my superior functioning being incongruent with a trauma history.

As long as there is only one story of trauma told, one narrative or one presentation of the trauma survivor, we are no closer healing as a society. As long as we are told of “inevitable” relationship problems and stories elsewhere about mythological “cycles of abuse” we continue to deny agency to survivors. Trauma is processed differently by different people, and diverse worldviews play a huge role in that processing.

We need empowering stories of trauma survival. While it is true our bodies and minds are affected by events, it must be told that we have agency in our response. We are not doomed to one set of behaviors because of what we have experienced. All survivors need a time and place to heal, but we should not all need to exhibit the same stereotyped behavior in order to access that place of healing.

Letter to an OB/GYN who did not take my PMDD seriously

This is a copy of a letter from a patient to her former doctor. I commend the author and contributor Amanda for speaking up and advocating on her own behalf and ultimately advancing the cause of educating physicians about premenstrual dysphoric disorder.

Doctor,

I was a patient of your office for about 14 years which included delivery of my two daughters in 2001 and 2004. I last saw you in the spring/summer of 2013. I had come to you for a consultation and to discuss my request for a hysterectomy/oophorectomy. I typed out a list of how my symptoms of PMDD have affected my life for the past 15 plus years. My symptoms were debilitating and affected my life in every way. For two weeks out of the month it affected every relationship (work, children, spouse, family, and friends). I endured impulsive behaviors, suicidal thoughts, hopelessness, self-harm, hating myself, etc. I discussed past treatments, consequences and multiple medications for the past 17 years. Nothing was working anymore and my PMDD was getting worse. I never had the physical effects of PMDD or had bad, heavy periods. After you read my list, you looked at me and said you would never give me a hysterectomy for this and for those reasons. You said I didn’t have heavy bleeding, fibroids, etc. You said that I just need to remember that it’s “PMS” and remember what I was dealing with. You didn’t even acknowledge and address it as PMDD. You didn’t believe me or take it seriously. I said if it was as easy as changing my thoughts, then I wouldn’t be in your office and left. I left your office in tears and felt hopeless. I never wanted to come back and never did.

I am writing you almost six months post operation of a hysterectomy and bi-lateral oophorectomy. I am 37 now and am on an estrogen patch. I have never felt better in my life. I knew that the surgery was my last resort and only hope. I took Lupron injections for six months prior to surgery to ensure that this would end my PMDD. As a doctor and a woman who has dedicated her life to women’s health, I feel you didn’t take me or my issue seriously and ultimately failed me. I have learned through my PMDD treatment there are doctors who don’t even believe this exists and/or don’t even know about it.

I have been active in Facebook groups for PMDD since they started them and they have been my only support as I do not know anyone personally that suffers from it. They have been wonderful to relate to and to know that I am not alone. I have attached this letter from the NAPMDD foundation. They have a great website of resources for the doctors and for the patients. They have asked members of the association to provide the letter to any OB/GYN’s and women’s health services. Most women are self-diagnosed that have PMDD. They are very often misdiagnosed by practitioners for years as having Bi-Polar, Anxiety, Borderline Personality Disorder, Depression, etc. I was fortunate enough to have a therapist who specialized in women’s studies to diagnosis this after years of treatment and wrong diagnoses. I hope that by reading these letters and possibly checking out this website that you can have a different outlook on this disorder, which is said to affect 8% of women.

Sincerely,

Amanda

 

This piece is copyrighted by the author Amanda.

The Real Cost of Healthcare

Are you getting what you pay for? How much is that time in the doctor’s office worth to you? How much is it worth to the doctor?

Let’s examine a case.

The following is based on an interaction between a married couple, Andrew and Dana, and a neurosurgeon. Andrew had been experiencing neck pain for years and found it was worsening in severity. He had an MRI of his neck that showed no major issues. The neurosurgeon reviewed the negative cervical MRI report with Andrew at his initial appointment and ordered a bone scan and an EMG test to try to pinpoint other causes. Andrew and Dana had already learned at the time of the EMG that it was negative. Dana accompanied her husband to his follow up appointment to find out the results of the bone scan.

The couple recorded and transcribed the appointment for my review.

Dana and Andrew arrived at the office at 7:20 for the scheduled appointment time of 7:30. No one showed up to open the office until approximately 8:07. They were taken back to an exam room at about 8:28. The doctor entered the exam room at 8:50.

“If you look right here, you’ll see that there’s an area…an increase…right in here…arthritis…” Dr. Neurosurgeon mumbled, “Have you ever had your shoulder looked at?”

“No, sir,” answered Andrew.

The doctor said nothing in response.

“What does that mean?” Andrew asked.

“Uh, I’m a neurosurgeon so…I would send you to somebody who takes care of shoulders.”

Silence.

“Okay,” said Andrew. “So like a…?”

“An ortho person?” Dana offered.

“Yeah, that’s who,” said Dr. Neurosurgeon, “a shoulder specialist.”

Silence.

“So give me an idea of what you’re thinking after seeing this. What type of issues…” asked Andrew.

“I think it’s a shoulder issue,” Dr. Neurosurgeon replied.

“So a mechanical issue as opposed to…” they were almost begging for information. “Muscular or…”

“So you have a shoulder problem,” he said.

Silence.

“So who might you recommend?” they asked desperately.

Dr. Neurosurgeon gave them a name and told them that the receptionist would set up an appointment with the shoulder surgeon he named.

That was it. The couple basically had to beg for information and ended up with very little. Now I understand it is outside of Dr. Neurosurgeon’s specialty to identify images in a bone scan but he was not the least bit sympathetic to Andrew and Dana’s desire for information. He could have given at the very least an outline of what the shoulder specialist might look for and explain that he was not qualified to predict the outcome.

He could have said: “I’m sorry, but issues that don’t involve the central nervous system are outside the scope of what I’m comfortable addressing. I am happy to send you to Dr. Boneanmussle who will look at this scan and maybe order more tests to see if you have a shoulder muscle kerfizzle or bone splatazzle or something else entirely. I understand you’re eager to pinpoint the reason for your pain. I wish I could tell you more but our scheduler Ms. Gitterdun will get you set right up with Dr. Boneanmussle’s office. I apologize for your wait and I hope I have given you at least some information.”

That would have taken 45 more seconds.

In 27 years of practice he hadn’t figured out a better way to communicate? As a neurosurgeon he is just not that smart?

No, he is that smart. He is just that uncaring. He sees no reason to expend energy improving his communication skills because he doesn’t think his patients deserve any more than what he currently offers. He doesn’t believe he owes them more than he is already giving them. And no one is holding him to a higher standard of communication.

Would you accept this level of communication from your cell phone company customer service person or from your auto mechanic? Of course not. In a comparable business transaction you probably would have asked for a supervisor or simply taken your business elsewhere. But this is health care.

The encounter lasted 2 and a half minutes. Andrew’s insurance was billed $129.00. His insurance contract reduced the charge to $93.04. That is a billed rate of $51.60 for each minute of face time with the physician. Insurance reduced that charge from $51.60 a minute to a mere $37.22 per minute of doctor face time. My educated guess is that the doctor spent about five minutes reviewing the bone scan and three and a half minutes documenting the appointment. So we’ll say the doctor spent 11 minutes total on Andrew’s case. That’s still a billed rate of $11.73 per minute, reduced to $8.46 per minute by insurance. Andrew’s insurance agreed to a rate of $507.60 per hour.

In contrast the couple had been at the office for one and a half hours. They had a forty minute round trip commute to the office. It took 7 more minutes after seeing the neurosurgeon to schedule with the shoulder specialist. That means Andrew had invested well over 2 hours of his time to get 2 and a half minutes of interaction with a doctor who didn’t tell him shit. He had to dip into his paid time off allowance to go to this appointment. Andrew makes about $37.50/hr. Dana freelances so we’ll leave her income out of the equation. According to work.chron.com, after six years in practice, the average salary for a neurosurgeon is about $589,500 a year, or $283.41/hr, based on a 40 hour work week. This surgeon has been in practice for 27 years so I think that is a conservative salary estimate. Just imagine if Andrew had made the current minimum wage of $7.25 an hour with no paid time off. Imagine how that loss of work would have affected the family’s finances!

With these types of money for time disparities Dr. Neurosurgeon should have been a little more sympathetic to Dana and Andrew’s inquiries. I fully understand the costs of staff and other overhead, but charging $129.00 for 2.5 minutes with a physician who offers very little information is unacceptable.