What Hospitals Don't Tell You About Therapy for Disabilities

Becoming disabled can be a traumatic experience. The focus on that experience and disability become the center of attention. Many come to trust and rely on the professionals to help with them with the process of therapy and recovery. Unfortunately there are some things that hospitals just don't tell someone that is disabled about therapy. I have interviewed psychotherapist and paraplegic Charles Schrier who shares his personal experience and what hospitals don't tell you about therapy for someone that is disabled.

Tell me a little bit about yourself.
I've been a student of human behavior since I was a child in school. When the other kids were trying to figure out their in-class assignments, I was trying to figure out why they behaved in different ways. I planned on a career as a psychologist, but things unfolded differently. I left the country before I graduated from college. I spent some time in North Africa and the Mid-East, and still somehow I ended up in retail back in Maryland. By 1995 I had built up a good amount of equity in the business I was in, and despite making a decent income, I knew that I didn't want to spend my life in sales, at any level. I sold out, and my timing was good. I was able to spend the better part of the next five years riding the internet wave, traveling here and abroad, and skydiving. In December of 1999, I had an accident that left me an incomplete paraplegic (some things are better left uncompleted).

After my accident I was medevaced to St Mary's Hospital in Palm Beach Fl. The on'"call emergency spinal cord specialist, Dr. Clay Baynham, saved my life. At that time I wasn't sure how I felt about that.

The hospital did a great job dealing with my trauma. Most hospitals in the States, including, and maybe especially, military hospitals, do a fantastic job of addressing trauma, and dealing with traumatized patients. I spent a long time in intensive care. At that point in time, during the few hours that I was conscious each day, I was so riddled with pain and opiates that I never really thought about my prognosis or about how my life would be different after I left the hospital.

A couple of years after my accident I decided to go back to school so that I could become a therapist and work with other people that had become disabled. I soon realized that everyone has "disabilities." I'm not a Rogerian therapist, and I don't believe that everyone already has all the tools they need to make changes in their lives, or that by simply listening to them empathically they will figure out how to fix themselves. On the other hand, I know that people are perpetually in the process of "identity reconstruction" and I insist that my clients take the lead in that process, instead of allowing it to be a passive event that "happens to them". I'm a "constructivist" and somewhat selective about whom I work with. I don't have the time or inclination to work with people that are ambivalent about making changes in their life. I refer those people to more traditional therapists. However, if an individual is motivated about making changes in her life, I'm the person you want to see. I won't let you sit around for an hour each week, and whine. I will push your buttons, teach you how to rewire your buttons, and expect you to make certain changes in your behavior until your thinking becomes consistent with your behavior and your identity is consistent with your values.

What are some typical things hospitals will tell a patient that has disabilities and needs therapy?
Many hospitals have entire teams of people on staff to help persons with recently acquired disabilities learn how to reintegrate into society. It's a great idea, however while still in the hospital, reintegrating into society is the furthest thing from one's mind. At that point, most patients are primarily concerned with their pain and their prognosis. And, unfortunately when it comes to prognoses, most doctors would rather err on the side of caution. This makes sense from the doctor's perspective; however it does little to lend hope to the patient

The hospitals employ physical therapists, occupational therapists, speech-language pathologists, rehabilitation nurses, social workers, rehabilitation therapists and psychotherapists. They may even have a few more kinds of therapists, which I've forgotten . (Ironically, very few hospitals have physiatrists on staff. Physiatrists are medical doctors that specialize in treating the physical aspects of rehabilitation). Most of the therapists, counselors, doctors and nurses are good at what they do, but they are specialized to the point that I think it makes it difficult for any of them to see the big picture.

The physical therapists work hard to help the patient regain as many physical abilities as the doctors say they should have, or as their experience working with similarly disabled people suggests they should be able to accomplish. The occupational therapists work with the patients on relearning ordinary living skills, or learning new living skills that the patient can manage if she can't relearn the old ones. For example, an occupational therapist working with a stroke victim, or an amputee, may assist the first individual in relearning basic skills, such as how to write. Or they may help the amputee learn how to get dressed with one hand. Occupational therapists are somewhat mysterious, as their focus is on assisting people with home skills, not job skills. If anyone knows why they are called occupational therapists, they are keeping it a secret.

Then there are the people that do what one would expect an occupational therapist to do; these specialists are called rehabilitation therapists. If the hospital doesn't employ any rehabilitation therapists a person with a disability may never know that this profession exists. I learned about the Florida Division of Vocational Rehabilitation (DVR) through a chance encounter, about a year after I was discharged from the hospital. The rehab therapists' job is to help applicants who have disabilities, determine what kind of job the disabled person may be able to perform, and enjoy. Or alternatively, to decipher what kind of training would be required to help these individuals find new and more suitable occupations '" and to assist them in obtaining that training. Most rehabilitation therapists are employed by the DVR, or whatever name your state has for that primarily federally subsidized entity (whose covert mission is to retain the status quo, at all costs, imho).

While in my second year of pursuing my Master's degree, I learned that rehabilitation therapists employed by DVR are expected to NOT provide therapy for their clients. I was pursuing a dual degree, both in rehabilitation counseling and clinical counseling; therefore I did my rehabilitation counseling internship at DVR of New Mexico. While at DVR, it was made exceedingly clear to me that my therapy roles should not overlap, and if a client would benefit from clinical counseling, it was my job to refer her "out". Unfortunately for my clients in need of clinical counseling, I was unable to find out where "out" was actually located '" or how my disabled and unemployed clients were expected to pay for the clinical counseling they so badly needed.

Then there are the social workers, psychotherapists and/or clinical counselors employed by the hospitals. Like the other therapists, they are usually very good at helping the patient deal with a narrowly defined aspect of her current crises. I can only speak about those I have dealt with, but most clinical therapists in this position seem very adept at identifying the particular Kubler-Rossian stage of grief that the newly disabled patient is in, and meeting her there. For example, they would reassure an angry patient that it is natural to be angry, and it is even "OK to be angry", but that the anger will pass. If a patient should indicate that she has sensations where yesterday's nerve conduction studies contra-indicate this possibility, it would most likely be interpreted as denial on the part of the patient. Similarly, if a blinded patient says he believes his sight will be restored '" this is also interpreted as denial. If a client spoke about what she might have done differently, a therapist would be likely to interpret this as the client going through the bargaining stage. Regarding thedepression stage, doctors often beat therapists to the punch by prescribing anti-depressants for the patient on their initial encounter - in fact, doctors seemed to prescribe them as a matter of course and the clinical counselor only has to check a patient's file to see which, when, whom, and how much anti-depressant the patient is taking. Which professional is actually monitoring the patient's affect (moods), I don't know. I think many clinicians are so invested in clinical models, that in order to avoid the disappointment that follows denial, they may also impede upon the hope and resolve of the recently disabled.

But, your original question was; "What are some typical things hospitals will tell a patient that has disabilities and needs therapy"? I seem to have meandered. Most modern hospitals specialize in treating traumas, and most individuals with acquired disabilities come in to the hospital through the emergency door (the exception being for those that have progressively debilitating diseases such as MS, etc.) For the most part, hospitals do a very good job of dealing with the unexpected trauma that an individual who has suddenly become disabled has to deal with. The real problem is the ensuing trauma that the newly disabled person will have to deal with when he leaves the hospital. For that, he leaves the hospital totally unprepared.

What are some things that hospitals don't tell you about therapy for disabilities?
I think that the most significant aspect of understanding what happens when (or "as") a person becomes disabled is often overlooked. Naturally, the disabled individual, and those she interacts with, tend to focus on which abilities have been, or will become diminished. Next, the focus is upon how the individual will compensate for those lost or compromised abilities. This reaction is natural. You could even say it is reflexive. If David's car breaks down, the first thing he is apt to think about is; "How will I get where I need to go?" Moreover, those close to David will wonder the same thing; "How will David get here tomorrow?" But, this problem has been solved a million times and there are still a million more ways to solve it. Likewise, when David becomes unable to walk, his instinctual reaction is to think; "how will I get from here to there?" As with the car, David's friends and family will wonder the same thing. Like the car problem, this problem has also been solved a million times.

However, unlike the problem with the car, solving the logistical dilemma about compensating for impaired abilities does nothing to address the much bigger human problem about being defined as a disabled or handicapped person. This is the problem that hospitals don't address. This is the problem that physical therapists, occupational therapists, speech therapists, rehabilitation therapists, physiatrists, and most psychotherapists do not address. Moreover, this is the problem that is unique to each individual. This is the REAL problem. This is the problem, that when solved, offers the individual a life of quality.

The terms "quality of life" (QOL) and "health related quality of life" (HRQOL) are bandied about the hospital wards where the recently disabled are sent for therapy. And while therapists patiently teach stroke victims how to make certain sounds, or teach amputees how to dress themselves with one hand, and remind them that it will improve their QOL, no one asks the obvious question; "Is my QOL really directly correlated to my physical abilities?" No one asks, because the answer is obvious, and ludicrous. Moreover, everyone knows better than to believe such a childish idea.

If QOL were commensurate with physical abilities, everyone would aspire to be an athlete. The real question about maintaining a high QOL gets sidelined. Contentment, a synonym for QOL comes from within. It comes from being who we want to be. It comes from behaving in a manner consistent with our beliefs. It comes from choosing who we are, and liking who we choose to be. In a single word, it comes from our identity.

One of the first things we learn to do in life is forge our own unique identity. In grade school a child decides what kind of student she will be. In kindergarten she plans what kind of first-grader she will be. Later, she imagines what kind of teenager she will be. As she daydreams about and plans her career, her education, her husband her family, etc, she is planning on how she will construct her identity. As she constructs her identity she also imagines and plans how others will see her, treat her, and interact with her. The more successful she is in defining her own identity, and of defining herself in a manner consistent with her personal values and ideal self, the higher she will score on a QOL measurement.

But, the acquisition of a disability, or any life-altering event, can compel an individual to re-examine and redefine the identity they are constructing. In many cases, this is no big deal. For example, most people have probably imagined, at one point or another, how their life would be different if they won the lottery, if they became famous, if they wrote a great book, if they had married someone else -- the list goes on. Casually they toy with these ideas. But, if you suggest to a person that they fantasize for a few moments how there life would be different if they became blind, or lost a leg, or suffered some other life altering tragedy '" chances are they will not be too eager to indulge in this fantasy. This is a natural reaction. We don't get any pleasure from imaging a life with more difficulties and hardships.

It is crucial that the individual who becomes disabled, regardless of whether it happens slowly or suddenly, it is absolutely imperative that this individual takes control of and takes responsibility for his/her identity as a person with a disability. Because the person that does not define their own new identity will find that they become defined by their disability. When Mary, or John, losses the ability to hear, or walk, or speak, or whatever, they get the choice as to how they are going to define themselves. If they choose to define themselves as Mary or John, who cannot hear, that is the definition they will send the world, and that is they way the world will perceive them.

On the other hand, however, if they do not choose their new identity, their disability will define them. Instead of being John or Mary who cannot hear, they become "Deaf John" and "Deaf Mary". By not defining themselves, by not asserting their new identities, they forfeit the locus of control in their lives, and they become victims.

What can someone with disabilities do to make sure their needs are being fully met by the hospital?
I spend a lot of time discussing "identity", because this is the primary issue that fails to get addressed. And because that is what therapy is all about. When our behavior is consistent with our beliefs then we become the person we want to be. When we are the person we want to be, when we are a person we respect and admire, (and we become that person by acting in ways that we respect and admire) then the opinions of others lose their importance. We avoid depression because depression is a product of dissonance '" depression occurs when we fail to act like the person we wish to be.

Shortly after I got my MA I took a job at a rehab facility. The facility was becoming populated with soldiers that had either Post Traumatic stress Disorder (PTSD), or a Traumatic Brain Injury (TBI) or both. What I witnessed time and again was the families of the disabled person being left in the lurch, uninformed and uneducated as to how to interact with their disabled kin. The families of persons who have become disabled are traumatized as much as, and sometimes even more, than the person who has become disabled. Hospitals don't treat the family members of people who have become disabled, because no one pays for their treatment. Rarely does someone from the hospital even confer with the families about their loss. No one from the hospital advises family members to seek counseling '" and often times, even if the family feels the need for counseling, they minimize their grief by comparing it to the loss of the person who has become disabled and opt to do nothing.

Identity is an interactive affair. Moreover, families need to know that although they may be taking their child, or parent, or sibling, or significant other home from the hospital with them when they get discharged, they are not taking home the same person that they knew and loved prior to the disabling event. The person they knew and loved is gone. Of course, this is more pronounced when a person suffers a TBI, but it is no less true for an individual that becomes physically disabled. If Jimmy or Janice has lost their sight, or their hearing, they will be compelled to either adjust to or adopt a new identity. And for many, adjustment is the only choice because they are not aware that they may make choices regarding their new identity. The person they knew and loved is not the same person they are taking home. Their loved one does not become "a son or daughter with a disability"; they do not become "Jimmy or Janice with a disability". Rather, they become different people. They perceive and interact with the world differently, and the world they live in perceives and interacts with them differently.

For a parent or a child or a sibling of an individual that has become disabled, this is heartbreaking. But, for a significant other, it can be positively devastating. In the case of a significant other, things are more difficult because they have choices. Very, very, difficult choices. Imagine the recent bride or groom of a soldier that returns from war in Iraq with a TBI. Perhaps they have been married for less then year. The person they married is not the person that comes home from war to them. Perhaps they married for "better or worse". Perhaps Jimmy or Janice will get better, and be more like the person that is missing. They may like the new person, but, they may not. They may ask themselves, "Would Jimmy (or Janice) leave me if the role were reversed?" And they probably cannot know the answer to that question. They wonder if they will be plagued by guilt if they leave. The wonder if they will be miserable if they stay. They fear shame on one hand and loneliness on the other. And they are left alone to make one of the most difficult decisions any person will ever have to make.

Relationships give life meaning. As John Donne said, "No man is an island". And no person becomes disabled by themselves. Yet, time and again these are the people that are left behind. I believe the health care community engages in a grievous oversight by ignoring the needs of the family and friends of persons who become disabled.

Thank you Charles for doing the interview on what hospitals don't tell you about therapy for disabilities. For more information on Charles Schrier or his work you can check out his website on http://www.ckstherapy.com/.