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Friday, September 14, 2007

Revelation for the NYT Dining Critic

New York is a hard city. It is an even harder city when a person who uses a wheelchair wants to dine out. Althought the New York Times dining critics include brief reference to wheelchair access, I have learned not to rely on this information. Most people who use a wheelchair and dine out know they are too often directed to the worst table in the dining room. Getting to and navigating within a dining room can also be a challenge. As for accessible bathrooms, that is a pipe dream. This is hardly ground breaking news but for the NYT critic, Frank Bruni, it is. In a recent column, When Accessibility Isn't Hospitality ( he is amazed to discover that even though he asked about access for his reviews he "didn't appreciate the obstacles people without full mobility face until I dined with one of them". No wonder I don't trust the NYT.

It was nice of Mr. Bruni to dine out "with one of them". Aside from the demeaning choice of words, Mr. Bruni seems to have discovered what I and most people who use a wheelchair already know--there is giant gulf between what is perceived to be accessible and reality. The barriers encountered are architectural--even 17 years after the ADA was passed--and attitudinal. For example, if a dining room is accessed by a wheelchair lift I will routinely encounter one of the following problems: the lift will be broken, the power turned off, the key used to operate it missing or the lift itself filled with trash or used as a storage closet. I have also learned that many restaraunts have what I call the "cripple table"--the one table where all people who use a wheelchair are directd to. Generally this table is in a corner and as far away from others diners as possible.

What Mr Bruni and his temporarily disabled friend with whom he dined fail to realize is that the ADA is not just about wheelchair lifts, elevators, and accessible bathrooms. The ADA is civil rights legislation first and foremost. Access is not provided because businesses want to be accessible out of the goodneess of their heart but rather due to the fact it is the law. Diners who use a wheelchair have the same rights as those that walk in the door--and those rights are violated on a daily basis. The violation of these rights are not, as Mr. Bruni writes, relatively minor inconveniences. Such "inconveniences" are illegal. Why is it okay to "inconvenience" a person who uses a wheelchair but socially unacceptable to make all black people sit in a particular area? Segregation eneded a long time ago for blacks but remains socially acceptable for crippled people. As for Mr. Bruni's temporarily disabled dinner guest, she too does not understand the meaning of access as required by the ADA. If she had a glimmer of understanding, she would not have carried a 12 pound fiberglass ramp with her to get into restaurants with a step or two. In carrying this ramp she is accepting a subserviant social status and sending a very bad message--access is an individual person's problem. Businesses need not be accessible, it is their problem not mine.

I appreciate Mr. Bruni's effort to understand the inherent problems diners who use a wheelchair encounter. I think he would be well served, pun intended, if he dined regularly with a person such as myself who has used a wheelchair for over thirty years. Like others who have thought long and hard about the inequities associated with using a wheelchair, I pereceive the ADA as it should be--ground breaking civil rights legislation. When businesses, restaurants and ordinary indviduals such as Mr. Bruni come to this realization, perhaps I will be able to dine out like any other bipedal person.

Tuesday, September 11, 2007

Fear of Hospitals

I am afraid of being admitted to a hospital. I am not afraid of getting sick but rather worry about how I will be treated once I am admitted to a hospital. Caring for one's paralyzed body is not difficult but there are certain things such as skin care that require more vigilence. If hospitalized I may need help and being dependent upon nursing care is risky proposition. Today, even the most dedicated nurses cannot possibly provide the sort of treatment they would like to provide. Hospitals are run like a business and crippled people are a bad investment. Crippled people may require more care. Even worse, crippled people are thought to be complicated, that is their care and medical history is involved and will force medical personnel to spend more time with them. When these variables are combined with the belief that the life of a crippled person may not be as valuable as that of another person who can walk my level of concern rises exponentially.

My friend who is a physician's assistant thinks my concerns about being hospitalized are unfounded. I hope she is correct because it has been a bad year for crippled people who enter the hospital. This thought struck me today when I read Disability Studies at Temple University blog (disstud.blogspot) about the death of Linda Sue Brown. As reported in the LA Times, after Ms. Brown died her sisters were stunned by what they discovered--consent forms were forged and the care she received was questionable at best. I for one am not surprised that Ms. Brown received poor treatment, was subjected to what appears to have been risky surgery--a hysterectomy. The fact is Ms. Brown did not have the cognitive skills to consent to surgery but that did not stop surgeons from operating on her. This story reminds me of the Ashley Treatment I wrote about earlier this year for Counter Punch. Both Ms. Brown and Ashley were subjected to surgery that violated their rights as patients. Both families were involved--in Ashley's Case her parents consented to the removal of her uterus, breast buds, appendix and spleen as part of what they identified as the "Ashley Treatment". In Ms. Brown's case her sisters questioned the treatment she received and after months of investigation inspectors concluded the hospital failed to provide appropriate care.

The issues involved in the care and treatment of Ashley and Ms. Brown are quite different. But what links them is the violation of their rights. Both had loving families, were admitted to a hospital, and were subjected to surgery that was not legal. Why did these hospitals fail to protect their rights? What does this failure say about the treatment and cutural perception of crippled people? In my estiamtion, these cases highlight that the medical establishment does not value the life of crippled people. Hospitals and surgeons are more likely to perform risky surgery on crippled people because they think they are in desperate need of repair. What are the consequences of these actions? Not much, the hospitals in question receive bad publicity and no one is held legally accountable. Patients, even crippled ones, have rights and it well past time hospitals were made aware of that fact. I for one plan on memorizing a Patients Bill of Rights before driving to any hospital.

A New Beginning

I have started this blog for a number of reasons. First, I want to prove to my son Tom that I may not quite be as stupid as he thinks I am. Second, I want to comment on disability related topics I see in the news that have a skewed perpective. Third, I am impressed with disability related blogs and want to add my views with regard to the social implications of disability. Fourth, I want to my name and work to become more public so when my book, Bad Cripple: A Protest from an Invisible Man, is published next year it will sell, sell, sell.