Health Care Saga Part 4

Thanks to my former doctors, I finally had a refferal to the specialists I needed close to home. I was so relieved that I disregarded the proper protocol my HMO deemed necessary for them to pay and independently made an appointment to be seen by these specialists. I saw them on my own money and they agreed to perform the procedure. This is when another round of problems started. Some of the problems were caused by the insurance company and some by the general inefficiencyof the medical office.

After I gladly paid to be seen by the specialist, he informed me it may take a while to get to my case. I was fine with that. Knowing the kind of work he does, I knew this procedure was not a priority for him and I understood why. So I limited myself to contacting the office's surgery scheduler once a month to see if a date had been set. I became concerned when a couple months went by and that person had not returned my emails or phone calls. Finally, I got a response from her to the effect that she had forgotten all about me and she would get to it right away. Again, I knew my case was not a priority and dismissed the oversight once. Again a couple more months went by with a lack of communication from the specialist's office. Again, my contact with the doctor apologized for forgetting about me but this time informed me that after she tried to make arrangements with my insurance, they refused to pay because I did not go through proper channels.

Coincidentally during this time, I had changed dentists and went yet again for another cleaning. They found the same situation as the other dentist and agreed the specialist I wanted to see was the best way to go. They even willingly wrote me a refferal to the specialist. I hoped that it would speed this process up.  When I mentioned that I had done this to the surgery scheduler, I was informed that because what I required was "major surgery" the issue was no longer seen as a "dental issue" but a "medical issue" in the eyes of my insurance company. So any reccommendation from a dentist would be ignored since they were not "experts" in this area. I was informed I had to get an official authorization from my general practioner.

Never having used an HMO before, I was frustrated by the process. However, I complied with the request. I went to my general practitioner and gave him a run through of what I had been doing and what I needed in regards to my teeth. He explained to me that he could write up a request to see the specialist I wanted. However, my insurance would likely not grant it because my specialist was outside my medical group. The insurance would likely send me to a series of other specialists within my medical group for their reccomendation whether or not they had experience with dental issues.

He was right. The first specialist my HMO wrote an authorization for was an Ear, Nose and Throat Specialist. Just getting an appointment with this doctor exemplifies how useless this refferal was for my case. I called the office 3 times, each time being told by a medial assistant that the refferal was inappropriate and that they do not to the kind of work I was seeking. I checked back with my insurance who insisted this refferal needed to be followed through with. So I called again. This time I spoke with a cooperative medical office assistant. I made the appointment. The day of the appointment, I paid the co-pay. When I saw the doctor, he immediately recognized the futility of the visit. But called it the "nature of the beast". The "beast" being the HMO system. After I outlined to him my saga and what I wanted to accomplish, he acknowledged that the specialists I wanted were appropriate for my situation and was willing to write a reccomentation to them. He warned me though the insurance company may see fit to send me to a completely different kind of specialist within my HMO group before they would be willing to do as I asked. He was right.

In the next installment I will tell you what I am currently dealing with in the battle of wills between myself and the inept health care system.

Health Care Saga Part 3

About three years ago I got married to an independent-minded artist. He is self-employed and trying to make a name for himself in the difficult world of the arts on his terms. Being self-employed, he determines what projects he does or does not want to take on. Ideally he works when he chooses to. I think this is a set up that many of us in traditional nine to five jobs would like to have. Despite those perks, being self-employed also means added costs. My husband was maintaining his own health insurance. My husband is nondisabled. So, in comparison to my premium requirements, he paid about a fourth of what I did on a monthly basis. Still, it was expensive to maintain given his erratic employment while he establishes himself as an artist. We couldn't enroll him in my district's insurance plan unless I enrolled as well. For this reason, we decided I would give up my private insurance coverage and enroll us both in my district's group insurance plan. Together we would save upwards of $500 a month. The savings were needed but the headaches and the worry continued.

During this time, my husband also persuaded me to see a dentist after many years without seeing one. As I've mentioned before, seeing a dentist was always problematic for me. But I went anyway since I had the insurance and it was the responsible thing to do. I got my teeth cleaned and as I should have expected, the hygienist told me I had cavities. When I saw the dentist though, he took one look at me and said, "Were you in a car accident?" Before even looking at my teeth. I don't expect them the know the particulars of my syndrome off the bat. But that comment shows the average dentists frame of mind. They aren't expecting to see anything beyond the average facial structure and teeth. This is a worrisome predicament as people with disabilities become more prevalent and mobile in society. In any case after I educated him regarding my disability, he barely lifted my lips to look in my mouth--literally-- before saying I was fine and tried to dismiss me. When I mentioned the cavity the dental hygienist found, he made a token effort to look better and flatly said "I don't see anything" and walked out. I didn't see him or any other dentist for a year until Open enrollment allowed me to change dentists.



My next dental visit was a little more productive. The technician at the new office cleaned my teeth. The dentist acknowledged my cavity. But not before he asked me if I'd been in a car accident. Since the cavities were on my wisdom teeth he recommended that my wisdom teeth be removed. In retrospect I suspect he willingly referred me the office's oral surgeon because he didn't want to make the call as to whether my wisdom teeth could be removed in the office or needed a special referral. I made an appointment for a consult/procedure done during the summer when I was not working. The day of the procedure, I went to the dentist's office and met the oral surgeon. He looked at my x-ray's for the first time. He asked me a few questions about my disability and stated that he did not feel comfortable performing the procedure. He was concerned about the pain involved even with medication. He felt due to the structure of my jaw, the Novocaine medication would not distribute effectively and therefore, there would be unnecessary pain involved. He was also concerned that there was not enough bone implanted in the reconstruction site along my jaw. He was worried about breakage. All this amounted to the surgeon feeling that I was better off with someone more specialized with my disability and having the surgery in the hospital.

This all made sense to me and in a way, I expected as much. What irritated me was that the dentist, who I'm sure could see mine was a complicated case, didn't want to make that decision. He passed the responsibility on to the oral surgeon. The oral surgeon and the dentist I feel were both remiss in that they did not consult before hand on what was obviously a complicated case to determine the appropriate course of treatment in an expeditious manner. I was left to set aside time expected for a procedure and then had that procedure denied for foreseeable reasons.

The oral surgeon, while admitting that he did not have the expertise to perform the procedure, at the same time refused to guide me to what to do next. In other words, he refused to give me a referral to someone who was an expert. When I go to a doctor who admits I need more specialized help, even if he does not know of someone off the bat, I expect some research done within their networks to get me a referral. That's usually been the case in my experience. He flatly refused to refer me to anyone or tell me where I could look for someone. So I left the office and had lunch since I had not had anything to eat for 24 hours, expecting a procedure. Sometime passed and I received a hand written note on non-professional stationary from the oral surgeon explaining what needed to be done and recommending that it be done "somewhere else". he left no referral to a specific doctor or recommendation where I could begin to look. Fortunately, in this case I was more of an expert at this than him. I called up my reconstructive surgery specialists upstate that had reconstructed my jaw when I was a child. Thankfully, the the head of the department is still there. After hearing of my plight, they gave me a referral to where top look next. While that was a relief, it did not end my saga. I will continue the next leg of the saga in another installment.

Healthcare Saga Part 2

For many people who finish their schooling, the first few years in the job market are not quite what they wanted. They have to work their way up to the job they really want. Most people would say that's the American way--work for what you want. I won't argue that having spent a lot of time, money and effort at school to gain the skills for your chosen career should be counted as the "dues" you pay to get what you want--that's a subject for another blog series. Truth be told, I was one of those lucky people who, as soon as I finished grad school, I got the job I wanted--I was employed as a Special Education teacher. I was lucky to get the job despite having a visible disability and I was lucky because they offered group health insurance.

I readily signed up for dental and vision insurance--something I didn't have at the time. However, being wary of what would happen to me and my health care needs if I were to lose my job, I kept my private health care coverage. At first I signed up to also participate in a group HMO plan offered by my school district. I didn't plan to use it, I just wanted it as a back up. When I started going to my doctors for uncomplicated visits--a sore throat, a check up, etc.--that's when the insurance problems started. I was the consumer on both policies, I felt I had the right to choose which was my "primary" policy and which best covered my needs on a visit by visit basis. The insurance company would be in business no matter which I utilized--that's what paying my premium was all about. In hindsight I was being idealistic at best. I went through a year of infighting between my two policies. Ironically both my PPO and HMO were with the same company. I had done that deliberately thinking it would make things easier. They acted like they were each from competing companies.

First there was the issue which policy was actually my "primary". I wanted it to be my private policy as I felt they had better coverage--even though the other one paid for some things the private did not. That's the one I was actually using. According to the companies, this where the customer is not always right. I don't get to make that decision for myself. Apparently my district paid HMO was my primary. So my PPO gave me the bill to have my HMO cover it. On seeing the bill, the HMO promptly told me that because they did not authorize anything they were not responsible for paying it even though they were my primary insurance and the other policy refused. So I went back to my PPO who continued to refuse. This went on like a championship ping pong match for at least a year if not more. In the end I paid the bill in excess of $300 out of my own pocket so my doctor could get paid and I could be done with the headache it was causing me. That was probably not the most assertive way to go about it. But it was the one I chose at the time. I was lucky in a way I guess. I hate to think what the out of pocket expense would have been if I was having a bad year with my more specialized medical needs. Needless to say, I only lasted a year on my group plan. I decided the bureaucratic mess wasn't worth it. When open enrollment came around for my district again, I opted out of the medical insurance coverage though I kept my vision and dental plans as they were.

At this point I haven't even gone to the dentist yet. I still didn't want to face the inevitable questions, discomfort, difficulties and most of all the ignorance of your average dentist in regards to my dental needs. Even if someone else would pay for the visits. I promise my next installment will talk about my dental issues.

Healthcare Saga Part 1

It occurred to me that my letter to a government official was kind of vague as to the difficulties I've had with my health care. The issue actually spans several years. So I thought I would recount the story and try to explain how I got to this point.

I mentioned that I have Goldenhar's Syndrome. It is a rare birth defect that received some minimal press several years ago when it seemed that soldiers returning from Desert Storm were having children with this syndrome caused by the biological warfare exposure. I never followed if anyone actually found a definite scientific causal link to this theory. Even with the relative upsurge of babies with this syndrome in the aftermath of Desert Storm, I don't think it has been enough to reclassify out of the "rare" category and therefore, I doubt much research is being done to understand the disorder.

I digress. If you want to be nit picky the saga I am experiencing now actually started almost 20 years ago. I was wrapping up 4 years of surgeries to reconstruct my jaw. My specialist who had prepped me for these surgeries since birth, planned and organized the surgeries and surgeons, wanted to talk about procedures--both surgical and non-surgical still to come. I was 18, about to go to college and realizing that I was about to hit a 20 surgery milestone if i hadn't already. I told my doctor that I felt that all necessary surgeries had been done and I didn't want to do anymore. I wanted to be left alone. At the time she was recommending I get my wisdom teeth out and get braces. Simple, common procedures which shouldn't be that big a deal. But I was having none of it. I wanted to go to college and get on with my life with none of that stuff--except what was absolutely necessary--hanging over my head.

So I went to college and graduate school and except for visits to my general practitioner for common colds (and chicken pox) as well as maintenance visits to some of my other specialists, I only had one surgery. This was a medically necessary, unplanned surgery caused by my hydrocephalus. I have a shunt to prevent build up of cerebro-spinal fluid in my brain. The shunt or tube finally broke after 16 years. It needed to be replaced or I was going to slowly lose my senses and various other functions of life. So I gladly had the surgery and continued on with my life. I was still under private PPO health insurance that my dad was paying the premium for. So having the surgery was no problem.

One doctor that I was not seeing during this time was a dentist. I always had trouble with dentists. They found it hard to work on my teeth and usually made unhelpful comments. Besides, the private insurance I had didn't cover dentists. So I figured the difficulties and comments weren't worth the out of pocket expense. So I brushed my teeth thoroughly and hoped for the best.

In my next installment, I'll talk about what happened when I switched to employer paid health care and finally went to a dentist.

Open Letter Regarding Healthcare Reform

Dear Government Officials:

My name is Maria Zuccarello. I am a fully credentialed Special Education teacher for the Los Angeles Unified School District. I also have a Master’s degree in Special Education. I am writing to urge you to take a vital and necessary role in crafting healthcare legislation that will ultimately lead to universal healthcare coverage for every American citizen.
I have Goldenhar Syndrome as well as Klippel-Feil Syndrome. I have had over 20 surgeries to correct my facial deformities, eye problems, and my hydrocephalus. I wore a back brace for nine years for scoliosis. In addition, I must wear a hearing aide. Originally, some of my needs were covered by private medical insurance from my father’s group insurance plan provided by his employer. It never covered all of my medical needs resulting in thousands of out of pocket expenses. For example, my hearing aide was never completely covered. A hearing aid is a necessity for me to participate as a productive member of society. In fact, my most recent hearing aid was not covered by my current medical insurance provided by my employer, the LA Unified School District. My father, an immigrant from Italy (and naturalized American citizen) always wanted to start his own business and live the “American Dream.” One of the consequences of living his “American Dream” was the great difficulty of finding both affordable and comprehensive coverage that would cover all my medical needs when I was still a child. Health insurance companies were wary of insuring me. Because of my many surgical and medical procedures in the past and preexisting conditions, they saw me as an enormous financial risk with the projected future surgeries and procedures.
After a significant period of searching, my father found the Major Risk Medical Insurance Program (MRMIP) to cover most, not all, of my needs. This Government Program is for persons such as myself who are a “major medical risk”. However the premiums are astonishingly high and frankly prohibitive for most Americans that it is supposed to benefit. I was on this program--the only one to take me--for several years. It saw me through every doctor visit and surgery. Yet MRMIP did not cover the cost of my hearing aide.
MRMIP was not a perfect solution to my health insurance concerns, but it allowed my parents and I to worry less about paying for medical care or gaining permission for any of my doctor specialist visits. Therefore, I was able to concentrate on earning my BA from Pitzer College and my Masters from Cal State Northridge leading to my current career as an Educator.
Most of my career has been working in the inner-city. I have become more familiar with another form of government provided healthcare, Medi-Cal. All of my students have Medi-Cal. I have known other people who were disabled that were also on Medi-Cal. While it is good they have free government coverage--something I never had because of my family’s upper-middle class income--there are drawbacks. I have known people, who have waited months, if not years, for approval for glasses or wheelchairs. If a family is ineligible for Medi-Cal, they have limited options. Either they go to the Emergency Room or if they are lucky, there is a community clinic in their neighborhood. Often these clinics and emergency rooms requires lengthy waiting times and are severely understaffed with limited resources and time. This population does not have a voice in the current health care debate. Spending time advocating for their own healthcare using a system that makes getting adequate, affordable healthcare difficult cuts into school and work productivity. This results in the loss of knowledge or money with which they can pay for a more independent lifestyle. The cycle continues with no hope of respite.
No Health insurance or inadequate insurance equals more illness, more incapacity and more dependence on government offered living assistance (welfare, SSI and the like). The beginnings of Special Education had a purpose in assisting people with disabilities become productive and functioning members of society. However, I can also say, without proper healthcare the struggle to achieve this quality of life goal is difficult. Improper or inadequate healthcare contributes to absenteeism in both school and the workplace and an inability to work or learn at full capacity.
This brings me to the purpose of my letter and my plea to you. It is widely known that the United States of America is the only developed country without universal health coverage. I am asking you to advocate for the end of private insurance monopolies and the implementation of affordable or free insurance that addresses the real health needs of the entire U.S. population in a comprehensive and timely manner.
Appropriate and accessible healthcare is paramount to a fully functioning society where everyone has equal access. With healthcare taken care of, people can more single-mindedly apply themselves to study, work and the pursuit of opportunities that cater to their personal interests. The vast amount of opportunities offered in this country has always been the backbone of the American Dream. Prohibitive healthcare costs and inadequate coverage impede access to the American Dream.
You can argue that people with disabilities do have opportunity for proper medical coverage besides Medi-Cal, etc.--which are fraught with beaurocratic problems-- there is still a barrier--discriminatory cost and coverage.
People with disabilities are largely unemployed or underemployed. Some who are unemployed but have marketable skills become entrepreneurs and open their own business. This is a barrier to healthcare as people with medically based disabilities often rely on group insurance for affordable medical coverage. However, that is a bit difficult if you are unemployed, underemployed or even self-employed. Steps are being made to rectify this. The Americans with Disabilities Act, when enforced should make it easier for people with disabilities to find some form of employment. I also know, as a Special Education teacher, steps are being taken to encourage students to participate more fully in the community as a student or employee after high school. This should lessen the dependence on government assistance. This is still not enough. In economic hard times it is difficult for anyone with or without a disability to get or retain a job--particularly one offering health coverage. So, a person with a disability would be well advised to maintain individual insurance in case of such a situation. This is difficult to obtain and maintain. Insurance companies are prejudiced against people with disabilities as a bad risk. It is difficult to get adequate coverage for a reasonable price. Often, they refuse to cover some things or charge a high premium.
HMO's present an added problem. Since obtaining employment, I have participated in a group HMO plan rather than the MRMIP as a more fiscally sound alternative. Quickly I found that while more cost effective than maintaining my own insurance, it is still fraught with problems. I am currently embroiled in a situation where I must see a specialist outside my HMO group to take care of a very simple procedure. I need my wisdom teeth extracted. This has been going on for more than a year. Taking care of this through common channels has been fruitless. All the dentists state I need to see a specialist because my facial deformities make extraction difficult and unsafe without the supervision of a highly qualified specialist. At the same time they are either reluctant to refer me or unable to make a recommendation to the appropriate specialist. I did my own research and sought out a highly regarded specialist at UCLA Medical Center. I found him on the recommendation of my former specialists at UCSF Medical Center whom I had seen in my childhood. I went to see him on my own money because I wanted to be sure he was right for me. Satisfied of his expertise, I went to my general practitioner to obtain authorization He informs me the insurance company will not take his authorization. I must see a different kind of specialist within my HMO group—an ENT who has no real expertise in this area, waste my time and the doctor’s—not to mention HMO money—to obtain authorization to eventually see the appropriate specialist. This issue remains unresolved after more than a year. This is indicative of the inefficiency, beaurocracy and waste that characterizes the HMO system. The insurance companies have been unduly prejudiced against people with disabilities for too long. In order to gain the full effect for the various Special Education laws, the ADA and other legislation designed to allow people with disabilities to be effective, productive and equal members of the society at large, I urge you the head a healthcare reform, which guarantees no cost full coverage equally accessible to all people regardless of their disability.
Thank you for taking the time to read my concerns. I hope the information I have given you presents the situation in a new perspective. I hope to see you as a strong voice in insurance and healthcare reform.

An Unusual Review

I loved the 1985 movie MASK directed by Peter Bogdonavich with Cher, Eric Stoltz and Laura Dern. In March of 2008, Pasadena Playhouse premiered MASK: the Musical. Same story but this time directed for the stage by Richard Maltby Jr. with Michelle Duffy, Allen E. Read and Sara Glendening in the most recognizable roles. Being in the Los Angeles area, there are plenty of people who could write a review about the play citing acting quality, direction, staging etc. to determine if the play is artistically and professionally any good. What I would like to do is take you through the story line and show you what makes this play, like the movie, significant and impressive for the real life story it tells.

The story line (written by Anna Hamilton Phelan) is about Rocky Dennis, a boy affected by craniodiaphyseal dyplasia or lionitis. The condition affects his facial bone growth causing his features to grow farther apart, flatten and harden. The play portrays the good and bad moments of his real life while brining up issues and situations that many people with disabilities universally encounter. The universality of the experiences and issues Rocky experienced is what makes this play a strong one.

Right off the bat at the beginning of the play you are introduced to The Clan. On the surface they are a bunch of biker friends Rocky and his mother hang out with. They also represent the foundation for Rocky’s self-acceptance and positive self-esteem. People with disabilities on a near daily basis will encounter prejudice, ill-will and ignorance. Especially while young, people with disabilities encounter these situations alone—that is with no frame of reference garnered from others with similar life experiences. That can erode anyone’s self-esteem. Despite changing homes and school due to his mother’s employment and financial instability, Rocky was able to maintain a healthy self-confidence. I attribute that to the consistent presence of The Clan. The Clan as I see it, is a mini-society with people who are exactly who they are. They aren’t threatened or intimidated by Rocky’s differences. They were able to respond to Rocky appropriately—as one of them. Well adjusted people with disabilities have a community where they are accepted for whom they are while also being treated as an equal. That community can be as small as a nuclear family and as large as an international advocacy group.

Almost immediately the play sets up the next experience common to many people with disabilities—the doctor visit. No one likes going to the doctor and growing up with frequent visits can be discouraging to most people. In the play, Rocky had forged a personal relationship with his regular doctors. The relationship allowed them to talk as friends. The doctors asked questions about school and family and Rocky responded openly, even jokingly People whose disabilities require significant medical attention deal with it best by acquiring doctors who are experienced and knowledgeable in their treatment and who they like on a personal level. Over the years, these doctors will essentially become their medical “family”. This family feeling fostered by Rocky’s relationship with his doctors is a great buffer and contrast to his next encounter with the new doctor.

As is the case with new doctors encountering someone with a disability, this new doctor referred to Rocky as a patient and a condition. He never referred to him by name and never directly spoke to Rocky unless Rocky insisted. This experience was common during the time the play was set.

This unknown doctor brings on another universal concept experienced by many people with disabilities—the prognosis. The prognosis scene illustrates another reason Rocky was such a well adjusted person with a disability. In the scene, his mother included Rocky in the news. This gave him empowerment over his disability. In the scene she also categorically refutes the dire news as having been said before many times which never bore fruit. She also says something which drives her attitude toward bringing up Rocky. Had they both dwelled on these “expert” prognoses at any time, Rocky would have been long dead. Instead, they have focused on living their life fully and with focus. This attitude drives many well-adjusted and successful people with disabilities. Living in the moment is very important when you have a disability. One moment you are going about your life, the next you are inconveniently in the doctor’s office for an appointment or in the hospital for a procedure. In order to maintain an active life, focus must be paid on the life you have, not the disability.

Rocky’s focus on living his life and strong support from his mother and the Clan give him the foundation to confront uncomfortable and unnerving encounters with uneducated strangers. His school was both institutionally and socially loathe to accept him on equal terms. The scene in which Rocky and his mother introduce themselves to the principal is straight and to the point. The principal immediately assumes Rocky’s incompetence for General Education and tries to assume expertise in Rocky’s needs. Rusty, immediately simplifies the situation for him and rhetorically asks something along the lines of “do you teach algebra, history and English?” Of course the principal says yes. To his astonishment, Rusty asserts “those are his needs.” All too often education experts purport to know a person’s needs based on their perceived disability—never mind their own inexperience with the disability. What Rusty did was to claim the expertise for her and her son based on experience—which in many ways trumps all formal education.

Rocky had a less direct but equally compelling way to renounce ignorance among his peers in social situations. He used humour to gain attention. But once he got their attention he didn’t stop there. He offered to show what he knew—both academically and socially. He did this in a non threatening manner which simply showed who he was. He did not have expectations for how they would react—though of course he hoped it would be favorable. Again, Rocky had the acceptance of the Clan and his mother—he didn’t need other people’s acceptance. This is why he was able to offer his friendship freely. Successful people with disabilities assert their needs and present their strengths independently as a fact—not as an excuse or source of pity or admiration. Well-adjusted people with disabilities—like any other well adjusted person—offer themselves without apology and leave it at that. People responded positively to Rocky because he wasn’t needy and he wasn’t aggressive.

While Rocky wasn’t needy—he did have needs just like anyone else. This was effectively confronted in the sequence between Rocky and Rusty about girls. I think this is a particularly stressful subject for the parent of a child with a disability. Every parent wants their child to find a special person—Rusty is no exception. She tries to evade the issue though by first telling him what she finds cute about him. She then does a well meaning but potentially very embarrassing thing—hires Rocky a prostitute. The scene brings up the issue of romance and intimate relationships for people with disabilities. That sequence in and of itself resolves nothing really. Except in that time period, romance for people with disabilities was just beginning to be addressed so Rocky and Rusty had little to draw upon to resolve the issue. Now, it is a more talked about issue and more people with disabilities are taking ownership of their sexuality and interpersonal relationships. They are asserting that they have the same feelings and needs as anyone and want the same thing as we all do.

The play’s sequence goes smoothly to Rocky meeting his first love. I have no idea if this romance sequence is factually true. I’m inclined to think it is not. But that is not the point. The sequence brings up in a romanticized fashion some issues a person with a disability faces when entering into a romantic relationship. Rocky, like most people with a disability is apprehensive as to how his love interest will take it. This visits his fears in the previous sequence that he tried to discuss with his mom. Would anyone love him with his disability? The in the play and the movie Phelan takes the easy or at least metaphorical way out of the issue by making Rocky’s love interest blind. She is able to get to know Rocky first for who he is. Only later in the relationship does she “see” his physical attributes. For the time period it is set in this is an extraordinary way for someone with a physically visible difference to get another person to look beyond their disability. That’s why the screenwriter took creative liberties and made Rocky’s love interest blind. In this day and age with the internet and internet dating becoming less and less taboo, people with a physical difference have the opportunity to present themselves to a potential love interest before their disability. The play does a smooth job to present the situation to its predictable end. Diana falls in love with Rocky for who he is and when she is presented with what he looks like, she is not dissuaded.

The meeting of Rocky with Diana’s parents presents the other side of establishing a romantic relationship with another person—how others will perceive you. Diana’s parents are also understandably protective of their daughter. They are put off by his disability. Instead of getting to know Rocky, they try to get themselves and Diana away. Rocky is understandably put off by their reaction but, as time goes by, he responds like the assertive individual he is. He accepts the situation for what it is, values it, and moves on. In the life of a person with a disability, this is a real situation they must handle. Finding a special person is half the task. You (and your love interest) must educate those closest to each of you who have questions about the disability or the feasibility of engaging in a relationship with a person with a disability. Usually, this situation calls for being assertive and upfront because many people will react like Diana’s parents and either refuse to acknowledge their concerns or try to remove themselves or their loved one from the relationship. If nothing else, that will not be healthy for the primary relationship. In any case, Rocky’s support system—The Clan--come to his aide again. He is still accepted unconditionally by them and they still include him in important events and rites of passage like a bike trip to Sturges, North Dakota for the annual motorcycle rally. In any case, the movie and play end essentially the same way with Rocky dying before that rite of passage is reached. His family—his mom and The Clan still remember him.

This play debuted in Los Angeles and Allen E. Read received an Ovation award nomination for his portrayal of Rocky. It is my hope that this play makes it to Broadway. This play can speak to anyone about their own lives as long as you can be like Rusty, The Clan and Diana and look past the “Mask”. This play brings up so many universal issues and attempts to blur cultural lines. Whether you are disabled or nondisabled these issues can be found in your life. That’s why I believe in the play and its underlying message of equality. Rocky Dennis “lived every second of his life” as his mother put it in an interview. That’s what we all should do.

The Children of Edgewood

On March 8, 2008, The Drkrm Gallery in Los Angeles opened a new photography exhibit by Ryan Herz. The Children of Edgewood is a series of photographs taken of children and adults with a variety of developmental disabilities in 1976. This was before many laws governing the education and employment of people with disabilities broke new ground, and a time when institutionalization was one of the few options available. If the artist’s purpose was to represent the isolation and objectification of his subjects—so common an ideal for that time—then he succeeded. What I suspect he didn’t bargain for was that his exhibit would represent how little has changed in 31 years.

The pictures are very professional. They are clear, focused and the artist makes good use of light and shadow. All but a handful of the portraits show the main subject—a child or adult with a visible physical or mental disability—in isolation. One of the most poignant photographs is of a girl sitting in a hospital bed from a distance. She is facing away from the photographer and gazing out a window to a nondescript landscape. I sensed feelings of helplessness and hopelessness as well as isolation and disconnection on the part of the subject. I interpreted the gaze out the window as a longing to be part of the outside—which is out of her reach. The artist chose to represent his subject in an objectified way. There is no personalization of the girl. Her likes and dislikes, abilities and inabilities remain unknown. Her individuality is still a mystery. This leaves the viewer with only one reaction—pity.

The emotional reaction of pity is a one dimensional feeling that sees the disabled as helpless victims.. Pity was more excusable as an emotion felt towards people with disabilities in 1976 than in 2008. That is what these solitary portraits promote. The novice viewer wonders what choices these subjects had in being photographed and what they were feeling. They may even wonder beyond the portraits and wonder about their lives. What kind of choices did they have? Did they have any other choices? A more empowering, modern portrait would show these subjects demonstrating their capaibilities and their connection to the world around them, instead of disconnected and alone.
This different approach would elicite a response from the viewer that would not have objectified the subject, but rather personified the person. It would a provoke a genuine interest from to the viewer to see these people for who they are and not what they lack. With a more empowering portrait, the subjects are infused with more depth and breaks free of stereotypes and shallow emotions, such as pity. The questions will run differently though the viewers mind. Questions can be raised about the subject’s work or personal achievements. The viewer can wonder about their opinions or preferences for the mundane things the able bodied take for granted.

I’m not suggesting we depict the disabled on a pedestal. Rather, I encourage artists and lay persons to view the disabiled based on their abilities. Disability empowerment is a little known concept to most people—with or without disabilities. The artist chose to objectify his subjects by painting a victimized view of disability in his selection of prints and his choice of a unacccessible gallery, the Drkrm Gallery in Los Angeles. When I went there, I encountered stairs leading into the building. I did not see any obvious accessible routes to accommodate wheelchair users or others for whom stairs promote inaccessibility. It was telling that during the time I spent at the Gallery, I did not observe anyone an obvious disability. This leads me to wonder, did the artist consider people with disabilities as viewers and consumers of his art or just as annoymous subjects? Wasn’t an audience of people with disabilities an obvious audience to tap into? I wonder if the artist or his managers thought to contact groups or organizations of people with disabilities who would have had an ingrained interest in this subject. Finally, what tells me that the artist was leaning towards a more dated (1973), disabled person as a victim, mentality is in the description of the exhibit on the Drkrm Gallery website:
"They are extraordinary pictures, almost like classical fashion photographs. The photographer so humanizes their pain."
"Disturbing, haunting, beautiful and ugly. One can't take your eyes off the subjects. It's like he captured their souls in tortured pose."
Use of semantics is very powerful when influencing people’s views. The ambiguous portraits, people’s limited understanding of the experience of a person with a disability and the words used in these statements, all create a portrait of the disabled as a poor, suffering victim and freak. Are we equating the disabled with Quasimodo? The portraits may be from the past, but the written text is contemporary. Another statement on the website leads me to believe that the artist has a dated view of people with disabilityies:
A portion of all sales will benefit The UCLA Foundation Medical Genetics Division
Not to say that genetics research has no place in disability empowerment---properly used, it does. This above statement views disabilities from a medical perspective, in which a disability is something to be “cured,” instead of one’s way of life. A more empowering gesture from the artist would be to offer some of the proceeds to the Center for Independent Living, for example. Finally, the cost of the portraits, upwards of $1000, makes the prints cost prohibitive to the majority of the population it directly addresses.

The exhibit would have been more compelling and intresting if (Artist’s Name) had revisited this world and created modern portraits displayed along side those he took 31 years ago. He would have discovered how people with disabilities are equal participants in their communities. Thus would have created a proud image of how far disability empowerment has come in the intervening years. Of course, I would hope the exhibit would be in a gallery that is accessible to all—both physically and financially. But please, see the exhibit for yourself online or in person, I welcome to hear different perspectives.

http://www.drkrm.com/edgewood.html#statement

drkrm. gallery • 2121 San Fernando Road Suite 3 • Los Angeles CA 90065 323.223.6867 www.drkrm.com drkrmgallery@gmail.comHours Tuesday-Saturday 11am-5pm Sunday 1pm - 4pm and by appointmentAll gallery events are free and open to the public.