What’s On Your Mind? By Michael Harvey

Low self worth and emotional pain and anger due to hearing loss.

Dear Dr. Harvey:

I'm a 29-year-old scientist and I've had a severe hearing loss since I was four, due to a high dose of aminoglycosides. Today, I purchased new hearing aids at $2,800 each. Much to my chagrin, I discovered my health insurer will not cover any kind of hearing aid. It is a setback, but not totally devastating, as I have a good job and I can afford payments for awhile.

My problem is this: I found out that my insurer WILL cover vision care, penile implants, orthodontics, wigs, electric wheelchairs, and even artificial impregnation. Drug addicts are bestowed with many options for treatment, all fully covered as well. Why are hard of hearing people and deaf people such a low priority?

Am I really a social defect and undeserving of any kind of coverage? I have become more and more depressed, knowing that many children are being denied the chance to hear while women who desire to bear children who are genetically desirable in her own image can do so and be completely covered. It seems to be a gross injustice.

Signed,

CM

Dear CM:

While I don’t know the reasons for insurance companies not covering the cost of hearing aids, you bring up a central issue: the challenge of maintaining psychological integrity in the face of perceived “gross injustice.” Following a major loss or trauma, it is often the subsequent secondary trauma of feeling mistreated by others that is so devastating. One naturally expects to be treated fairly, especially after incurring an unfair loss. Reimbursed audiological assistance should follow hearing loss. But given that what should happen does not happen, you’re left with the task of managing the emotional fallout: e.g., frustration, anger, outrage, sadness, and despair. 

Your feelings are shared by many other persons who are hard of hearing and by members of other minority groups who are treated as, in your apt words, “a low priority.” One potentially helpful response to such treatment is rational explanation: e.g., to explain the necessity of hearing aids to your insurance company, get medical documentation, etc. But in many cases of “gross injustice,” reason by itself is insufficient. In a different context, for example, W.E.B. DuBois, a Black activist in the early 1900s, dedicated his life holding on to the belief that if he could only explain to other people that discrimination and prejudice are irrational. But after repeated failures, he died as a broken man in a self-imposed exile, realizing his fallacious assumption much too late.

It would be vital for you to focus first on your own psychological self-care while reacting to the denial of insurance coverage (or any other kind of perceived injustice).

Your labeling yourself as “a social defect and undeserving of any kind of coverage” and becoming “more depressed” are red flags that you’re not taking care of yourself emotionally, and that, you, too, are in danger of slipping into a broken, self-imposed exile; of turning your anger and rage inward and becoming “more and more depressed.” To be concrete, the first easy-to-say but hard-to-do step is to not equate an insurance company’s “gross injustice” with your own self-worth. Indeed, unfair actions happen to deserving people.

Armed with your self-affirmation, the challenge is how to manage and channel your anger in a positive direction. The “Deaf President Now” Gallaudet revolution is perhaps the most well-known example of successful channeling of anger and rage. It was over 13 years ago when the University's Board of Trustees announced that a hearing person had been selected as Gallaudet's seventh president, despite all the evidence and support for a Deaf president. That injustice was a slap in the face for the Deaf students. But after a period of shock and despair, they channeled their anger outward; they got indignant; they organized and advocated for a Deaf president and other important changes; and they succeeded.

Finally, the rights of deaf people received long overdue national and international attention. Jesse Jackson put it quite succinctly: "The problem is not that the students do not hear. The problem is that the hearing world has not listened."

With respect to your insurance company which hasn’t “listened,” I would advise you to do some research and thoroughly understand all the complex factors which are involved; to join forces with others, both for emotional support and effective advocacy; and, above all, to prevent injustice from shattering your self-esteem and knocking you down. To quote African-American poet Maya Angelou:

“You may shoot me with your words,

You may cut me with your eyes,

You may kill me with your hatefulness,

But still, like air, I’ll rise.”

Dear Dr. Harvey:

I am a 39-year-old female who is progressively slipping into further deafness. I am experiencing continued lack of support on the home front and, to make matters worse have been ostracized for speaking up for myself against co-workers’ discriminatory, aggressive behaviors toward me.

At times, I become so overcome with emotional pain that I cry and feel as though I am drowning. My husband says snap out of it. He feels that people at work treat me the way they do because of my loud speaking and tone of voice. Needless to say, I don't hear my own voice. I haven't quit trying to live in the hearing world but, oftentimes, I feel like just throwing in the towel.

Do other people like me experience the same level of deep pain that others cause? How do I get my co-workers to stop mistreating me and excluding me from information that is needed to do my job? Also, how do I make my family see how painful it is to be a hearing person one day and then, for almost 11 years, be slipping away slowly from the ability to hear?

Respectfully yours,

L

 Dear L:

 With all due respect to your husband, I cannot believe that people at work treat you the way they do because of your loud speaking and tone of voice. Your voice can’t be strong enough to force people to act discriminatory and aggressive. It also sounds like you might understandably be angry at him for telling you to “snap out of it” (if you figure out how to do that, let me know) and for his “lack of support on the home front.”

A common scenario would be for you to accuse your husband of being insensitive and inpatient; he may, in turn, accuse you of being stubborn and not appreciating his help; and your strife would escalate, leaving both of you feeling alienated and betrayed by the other. 

Let me suggest another scenario. It is very tough for a spouse to vicariously experience the emotional pain and helplessness -– in your words, “drowning” -– that the other spouse experiences directly. When one member of a system is in crisis, each and every other member is also in crisis, albeit in different ways. Your husband and family may feel overwhelmed and helpless by seeing you “slip away slowly from the ability to hear.” (When my daughter was stung by a bee, I swear it hurt me more than her.) It may hurt them so much that they deny it, prematurely suggest solutions, and/or immediately give platitudes or advice.

Rather than express anger and outrage toward your husband, you can first thank him for his efforts and then clearly spell out what you need from him. Like CM in the above letter, you are speaking of a universal need to feel understood, supported and validated, particularly when traumatized by loss. Whereas CM’s insurance company could validate her pain in the form of reimbursement for hearing aids, your husband can “simply” (it’s not simple to do in practice, only in theory) listen to your pain, understand as much as possible, hold you, soothe you and, much later, give advice. (There is an old English saying, “Shared joys are doubled; shared sorrows are halved.”)

However, it is not solely your responsibility to get others to listen; in your words, “to get [my emphasis] my family to see how painful it is” or “to get [my emphasis] my coworkers to stop mistreating me.” Just as you cannot get -– a.k.a. force -- people to act in a discriminatory way, you also cannot get people to understand and respect your pain. Stated differently, it’s not your fault if your family, coworkers, insurance companies, etc., never come forward in the way that you hope.

You can, however, set the stage; make it more comfortable for others to reach out and come forward. Most hearing persons –- including significant others, family and co-workers -- do not understand how hard of hearing people –- who, after all, do not look disabled –- are often subtly excluded from communication loops. For your family, you could play audio tapes of simulated hearing loss, share articles about the effects of hearing loss and on communication tips (all available through the SHHH Bookstore). Family therapy or couples counseling may be helpful to resolve issues of loss, hurt, betrayal and frustration that everyone undoubtedly feels.

At work, you could also offer to explain vocational/communication ramifications of hearing loss; request a specialized consultant to conduct in-service training; request an evaluation for reasonable accommodations per the Americans with Disabilities Act; and look at what you could do differently. But again, as DuBois teaches us, reasonable explanations are not always enough. So start off low-key and affable, but ultimately you may need to hire an attorney.

Amidst crises, it is certainly not unusual to feel like “throwing in the towel”; in fact, in my opinion, your fear/desperation is quite normal and a potentially healthy step toward empowerment. I say potentially, for, as with any crisis, it is often when one “hits rock bottom” that one re-examines issues of personal responsibility -– whose fault it is for what – solidifies self-esteem, nurtures needs for intimacy, and learns to effectively channel one’s outrage. Through this kind of private reflection and dialogue with supportive others, you can resist the temptation to “throw in the towel” and, instead, be able to better deal with others’ lack of support, mistreatment and gross injustice –- whether from family, work or insurance companies.

 Michael A. Harvey, Ph.D., is a noted author and clinical psychologist whose specialty is psychotherapy for persons with hearing loss. He regularly lectures both nationally and internationally, including at several SHHH Conventions over the past 20 years. In addition to a private practice in Framingham, Massachusetts, he holds adjunct faculty positions at Boston University; Pennsylvania College of Optometry, School of Audiology; and previously at Gallaudet University. His latest book is titled The Odyssey of Hearing Loss: Tales of Triumph, published by Dawn Sign Press.