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Friday, May 24, 2013

New York Times MIsses the Point Yet Again: Inaccessible Doctor Offices

The New York Times published an article, “Disability and Discrimination at the Doctor’s Office” as part of its “Doctor and Patient section by Pauline W. Chen. See: The article broke no new ground. It is in fact an emotional rehash of an article published recently in the Annals of Internal Medicine. Here I refer to “Access to Subspecialty Care for Patients with Mobility Impairment: A Survey”.  The authors of this study concluded what pretty much every person that uses a wheelchair already knows: doctors offices are not accessible. In the dry vernacular of a medical journal:  Many subspecialists could not accommodate a patient with mobility impairment because they could not transfer the patient to an examination table. Better awareness among providers about the requirements of the Americans with Disabilities Act and the standards of care for patients in wheelchairs is needed.

As I noted, not exactly ground breaking news. Not surprisingly women that use a wheelchair encounter the most difficulties (I consider women who use a wheelchair a minority within a minority as we men out number them by a wide margin). The article in the Annals of Internal Medicine found 44% of gynecology offices were not accessible. Other findings include the following: 22% reported a patient using a wheelchair could not be accommodated; 4% reported the building used was not accessible; 18% reported transferring a patient were not possible; 9% reported there were no accessible examination tables or an lift. The reality is less than 10% of physician offices are accessible. The vast majority of offices are accessible in name only. Yes, you can get in the door but that is where access begins and ends (bathrooms are hard to find as well). In the words of Lisa I. Iezzoni, MD, director of the Mongan Institute for Health Policy at Massachusetts General Hospital in Boston “Health care is really one of the last bastions of this kind of discrimination”. Iezzoni also stated “Its curious because we are talking about health care”.

The great difficulty people with a disability encounter in their efforts to access health care is not curious at all. It is blatant discrimination. We are deemed an economic drain by for profit health insurance companies. Doctors perceive us as time consuming patients with lengthy medical histories. Staff considers us extra labor. Culturally, we are stigmatized: symbolically we represent the limits of medical science. If you doubt me, I suggest you use a wheelchair and see the sort of sideways glances one gets from people in the waiting room. It is an exceedingly uncomfortable environment. In fact I would describe the typical medical office a hostile social environment. And here is where the New York Times article was fascinating. It was not the content of the article but the multitude of comments that followed that illustrated how poorly understood disability is. The comments graphically reveal a stunning level of ignorance. Ignorance here refers to the fact almost every comment failed to understand the issue is flagrant civil rights violations.     

Here a sampling of comments

Hospitals might consider providing an ADA accessible clinic treatment area and allowing physicians to rent it for use by patients who need this type of facility. Booking time could be done by co-opting OR time blocking software/tools.

Doctors as most people are turned off by disabled, obese and unattractive people.

I think most people, even those in the medical profession (sometimes especially those in the medical profession) are traumatized by their frightening but limited exposure to the lives of people with disabilities. 
I think that professionals may sometimes know a great deal about "disability"; enough to be afraid, but they don't personally know anyone who has a severe disability very well and are kind of freaked out by the whole thing.

Everyone deserves to have access to appropriate quality health care. But who is going to pay for the office remodels and additional equipment? I can't see either Medicare or private insurers doing this. I feel fortunate that our healthcare organization is willing to make the investment in special exam tables, lifts, slings, etc, as well as the training needed to use these items safely. But I can't see physicians who work outside of big multispeciality groups or healthcare systems being able to do this without help.

OK, let's add this to the list of 10,000 other unfunded mandates that physicians struggle to comply with.

If all medical providers were required to have weight-adjustable units or elevators for the disabled, their costs would rise and they would have to charge more. So everyone else would end up paying for the morbidly obese and the wheelchair-bound.

A routine physical or really any routine procedure becomes difficult and time-consuming in this population. Offices would have to schedule double time for them and other patients would have to wait. If you could get reimbursed for a double appointment that would help.
On the other hand, being disabled doesn't exempt people from trying the best they can to take care of themselves.

A routine physical or really any routine procedure becomes difficult and time-consuming in this population. Offices would have to schedule double time for them and other patients would have to wait. If you could get reimbursed for a double appointment that would help.

On the other hand, being disabled doesn't exempt people from trying the best they can to take care of themselves.

The problem is federal mandates (ADA) without funding the extra work and expense involved in caring for these patients.

You can't expect every doctor's office to invest in very expensive extra equipment. Instead there should be at least one practice in a given area that does so, and that equipment should probably be paid for by a government disability program. Actually, I can see a specific area of a hospital such as an annex to an ER set up this way so it could be used for both purposes.

Not one comment framed the issue, the lack of physical access to physician offices, in a civil rights framework. Many expressed deep reservations about the cost of making medical offices and hospitals accessible. This concern is always linked with animosity directed at the Federal Government and so called unfunded mandates. This is grossly misleading. The ADA is not an unfunded mandate but civil rights legislation. Access and “reasonable accommodations” are required by the ADA. The ADA I would add is over twenty years old and enforced by the Department of Justice. The ADA is not some pseudo architectural requirement mandated by the Federal Government. The other obvious theme is what I would classify as segregation while commenters would deem it “special”; namely create a separate area for patients with a disability. The two themes identified illustrate just how much animosity is directed at people with a disability. Because our existence is not valued the general public balks at any and all expenditures directed toward full inclusion and equality. There is a deeply ingrained belief that wheelchair access is a choice—out of the goodness of our heart we are willing to spend some money on such access. But if the amount, an amount never identified, is too much well then too bad.  This misguided belief I blame on secondary school systems. As a society, we are quick to segregate people with a disability. Segregation starts in secondary schools replete with short buses and resource rooms where children with a disability are separated from their peers. A harsh lesson is being taught--segregation is the norm and socially appropriate. People with a disability and all those that could fall into a category anthropologists identify as the other do not belong beside typical people. We humans fear others that are different. The other can take many different forms. People with a well-known disabilities such as paralysis, blindness, profound cognitive disability, or mental illness. One could include those unusually tall, short or fat (obese). I would also include those that purposely or involuntarily become different: heavily tattooed people or those disfigured by cancer or an accident. The list of possible others is rather is sweeping but the social response to such others remains the same. 

I wish I had the answer to how to create a fully inclusive society. I wish I knew how to insure that all people share the same civil rights. Brilliant and famous men and women before me have failed in their efforts. Hence I know such an effort is less a specific goal than an ideal to strive for. I just feel that we are failing to make even a modicum of an effort today. Lip service is paid to laws such as the ADA. Forty years of progressive legislation has absolutely no social mandate—the comments following the article in question emphatically demonstrate this. I don’t get it. Disability is never going to disappear. It is in my estimation a integral part of humanity and our evolution.   

Wednesday, May 22, 2013

High-school Prom: A lesson in discrimination

I did not go to my high-school prom. I knew few people in high-school in large part because I spent most of those years in the hospital. As an adult when the subject of proms comes up I often see women cringe when they look at photographs of the dress they wore. Men shake their head over the bad haircuts, peach fuzz on chins and awkward poses. Some recall getting drunk. Others recall a sexual tryst. While high-school proms do not resonate for  me, I understand for many (perhaps most) it is a big deal. Thus I read with interest about a young man in Oregon who tried to go to his prom and was confronted with an inaccessible venue. Initially I was not impressed. When my son was in public school the administration was consistently hostile to any effort I made to be involved with my son's education that required a so called reasonable accommodation. For instance I was prevented from going on any field-trip because the school owned a single short accessible bus referred to by students as the "retard bus". My son was aghast at the suggestion this bus might be used. Thus when I read about the young man who encountered an inaccessible venue I thought this was business as usual. The articles I read were largely supportive and the comments nothing short of hateful. The primary goal seemed to be finding out who could be blamed for the so called mishap. See "Disabled Lake Oswego Senior Arrives for Prom but Can't Get In,   

I have no interest in assessing blame. I refuse to play this classic American game. I do not care about who is to blame. I care about fixing the problem. The problem is the inclusion of this young man was an after thought at best, his existence singularly unusual and never to be repeated. I have encountered the situation this young man encountered many times in my life. People who suddenly notice a gross lack of access become upset. It is as though the lack of access never existed. Stupid ideas are suggested. Maybe we can lift him up a flight of steps? Great idea provided the person getting lifted is not dropped. And yes this has happened to me many times when I was young and dumb enough to allow people to carry me. The principal was upset and stated "we are trying to come up with any way he could be there". Far too little far too late. This young man's mother was furious. She expressed her fury to the school board and encouraged the school to find out what went wrong. It appears all agree the student had the right to attend the prom. Gee, how nice and liberal. A school official noted in a letter sent to parents "this is a mistake that never should have happened. We have a responsibility to provide accessible facilities for school functions, and we should have been aware of any limitations prior to leasing for this year's prom". I have three words for the school official: utter bull shit. Let me explain what the school official is really saying. We screwed up we are sorry. It was an isolated error. Osrry but this was no small mistake. It was a flagrant civil rights violation. The telling phrase is "we should have been aware of any limitations". I have heard this type of line dozens of time. What the official is really saying is we like the venue, it fits our budget. In the future we will make sure no pesky wheelchair users show up for the prom. If such a person is going to attend we need to know in advance. Only then will we search out accessible venues. If the pesky wheelchair user that insists on showing up, creating extra work, and selfishly draining the school budget is not liked or deemed a problem child an inaccessible venue will used. The only difference is the person will be notified in advance. Again, this was standard practice when my son was in public school. I sincerely doubt anything has changed in the last three years given the fact school budgets are increasingly limited. 

Most news reports state the school has been accommodating in the past. They also state the young man in question attended school dances and sporting events such as football games. These sort of statements are bizarre and remind me of a line I hate to hear directed at me--"It is so good to see you out". Is this student not supposed to go to football games and dances? Yes, the ordinary is impossible for us pesky crippled people. Wow, you can attend a dance! Wow, you can drive! Wow, you like sports! It is as though you are almost human. Bipedal people rule. Bipedal people have the power to decide when and under what circumstances the ever so special wheelchair user is permitted to show up. Of course this is ever so generous of the morally and physically superior bipedal hoards that rule the country. Sorry but no. The young man in question father stated sorry is not good enough. I agree. I do not want to hear sorry. I want to know the rock solid plan that is being devised to make sure this never happens again. Better yet, I want to hear about a group of parents that ban together like Mothers Against Drunk Driving (MADD) dedicated to making sure every prom in the United States is 100% accessible. But let's not stop there. Every prom will also have accessible transportation as well. When that happens I will know significant social progress has been made. I am hopeful we may have taken a tiny step forward. In Salem Representative Sara Gelser (D-Corvallis) a member of the National Council on Disability spoke about the incident.

I do not like the emotional tone but the positives of Gelser's short speech far outweigh any minor complaints about language. I was struck by one image though. The fact the young man ended up alone with his parents while all the other seniors danced away and had great fun. Imagine if the seniors, this young man's peer group, stopped--that is they refused to dance. Imagine if in mass they refused to participate in an event that was exclusionary. This would have been civil disobedience at its finest.  This could have made national headlines. What a wasted opportunity. Sorry, I am dreaming big today. 

Sunday, May 19, 2013

Growth Attenuation, Intersex and Bodily Integrity

One of may favorite scholars is Alice Dreger. I find her work fascinating because it makes me think in a different way. Dreger studies and advocates on behalf of people with intersex conditions. I deeply admire her scholarship, advocacy and ability to enhance people's understanding of interesex conditions. As I understand it, intersex is the condition where an individual is born with biological features that are thought to be male and female. Sometimes referred to as ambiguous genitalia the history of people with intersex conditions is disturbing. Early sex assingnment surgery is the conventional response on the part of medical science. For far too long the ethics of such surgery was not questioned. Dreger also studied conjoined twins and standard medical care. Separation surgery was the norm because it was assumed conjoined twins could not lead a normal life. In her book, One of Us, Dreger clearly demonstrates conjoined twins can and have lived  full and rich lives. There are obvious parallels between Dreger's work and the history of disability. In fact the subtitle of One of Us is Conjoined Twins and the Future of Normal.  Normal here is meant in the context of how do we select medical treatments and use medical technology. I agree with Dreger that too many standard medical protocols cause as much damage as they help. Dreger wrote:

In the United States, the values of individualism, self-improvement, fee enterprise, and high-tech medicine have combined in the past few decades to create a culture in which one is able--indeed even expected--to employ medical technologies that alter one's anatomy and make it more socially advantageous".  

I think a connection between the past and present medical response to interex, conjoined twins, and those children who could potentially be subjected to growth attenuation can be established. By those children I am referring to young people with severe cognitive and physical deficits. I am prompted to make this connection by an article Dreger wrote "When to Do Surgery on a Child Born with Both Genitals" in the Atlantic. See: I do not envy Dreger's effort to raise the level of understanding about intersex conditions. People accept without thought the stark dichotomy between male and female.  Two genders exist and much cultural effort is put into maintaining that stark dichotomy. In fact I would argue we celebrate and value the difference between men and women and in a myriad of ways seek to enhance that dichotomy. While this may work for the majority of the population, it provides the opportunity for medical science and technology to reinforce this dichotomy via questionable treatments such as sex reassignment surgery. In the Atlantic Dreger writes about a 16 month old foster child from South Carolina identified as M.C. who underwent surgery to correct ambiguous genitalia. The goal was to make M.C. genitals look more feminine. M.C. is now eight years old and identifies as a boy. His adoptive parents believe that the state was wrong to allow the surgery. They also argue doctors were wrong not to inform those making the decision on the part of M.C. that the surgery was not medically necessary. The parents recently filed a lawsuit on behalf of M.C. that alleges doctors "robbed M.C. not only of his healthy genital tissue but also of the opportunity to decide what should happen to his own body". When I read Dreger's article it took about a second begin thinking about parallels between the so called Ashley Treatment and sex reassignment surgery. While Dreger worries about how the court will respond, and she has a sound reason to be concerned, I wonder if the outcome of this case can be applied to growth attenuation. Dreger wrote

it will be interesting to see whether the courts agree with the plaintiff's lawyers that the 14th Amendment is at play here, and whether they will limit that Amendment's scope to cases where "a boy lost his penis." If, in fact, they understand the case as being an unfair situation in which "a child lost healthy genital tissue for no legitimate medical reason without fully informed consent," then the implications will be much broader, perhaps touching even on routine neonatal male circumcision.

I agree the implications could indeed pertain to male circumcision. However, I would speculate the possibilities are even wider in scope. Wider not in terms of the number of boys who may not be circumcised but in limiting radical procedures such as growth attenuation and sex reassignment surgery. Dreger concluded her essay noting that 

since M.C. was born -- major medical consensuses have moved away from the assumption that genital-normalizing surgery is required in all cases of intersex. This case is likely to drive surgeons to be even more hesitant to remove healthy genital tissue and healthy gonads from children like M.C. Ideally, the case will also lead more parents like Mark and Pam Crawford to understand that parenting sometimes involves forms of unpredictability that cannot, and even should not, be made to disappear.

I think any physician who is considering to radically alter a child's body would be extremely hesitant to make such a suggestion to parents. I think sex reassignment surgery, separation surgery with a very high mortality rate for conjoined twins, and growth attenuation all qualify as radical body alterations. I would also speculate children being considered for these radical procedures need to be protected by the fullest extent to the law. At minimum, such a child should be represented by a disinterested third party. I am not suggesting every surgical procedure performed on a child be subject to a legal review. Parents are given great latitude, as they should be, in making critically important health care decisions. However,  some radical procedures warrant an added level of child protection and advocacy.  I think the past and present use of sex reassignment surgery demonstrate this fact. Dreger noted that "many intersex women who had their clitorises surgically shortened in infancy are legitimately angry about having had tissue (and thus sensation) taken from them." Obviously the differences between the intersex and those with profound cognitive and physical deficits is significant. Yet I would suggest both populations have a right to their bodily integrity--they are afterall human beings born with the same rights as those reading these words. More generally I bemoan the fact medical technology is being used in ways that I think can be deemed ethically questionable. Radical surgery can not solve the social problems people who have an intersex condition will encounter. The same can be said for growth attenuation. Rendering a child small as Ashley X parents did may make her physically easier to care for but will not address the profound problems people with cognitive and physical deficits encounter (and by problems I mean shocking abuse and a gross lack of social supports). Hence I would conclude we, meaning all of us, need to do exactly what Dreger's subtitle suggested--reconsider what we deem normal. As one with an atypical body I think it is well past time to broaden our thinking and create a more inclusive society.