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Saturday, October 24, 2009

What's Going On at Newsweek

In the last month two excellent articles have been published by Newsweek. Yes, Newsweek, a classic example of the venerable print media that is dying a slow death has published two excellent articles that were disability related. The first article published last month on September 23 was entitled "Redefining Cure", the second was published yesterday, October 23 and entitled "Blind Spot". The article, "Redefining Cure", on cure for spinal cord injury was not your archetypical story, a.k.a. a Christopher Reeve diatribe for stem cell research. Alan T. Brown, a long time advocate for a cure and disability rights effectively pointed out we need to redefine our idea of what a cure for spinal cord injury entails. Super Bowl commercials of Reeve walking again and pity ploys are not what Brown has in mind. Brown rails against the cost of living with a spinal cord injury and focuses on the lofty goal of cure and advocacy. These two goals are not mutually exclusive, fact that eluded Reeve his entire post disability life. What amazed me was that Brown was able to get Newsweek to write about spinal cord injury, cure, and advocacy with nuance and understanding. This is something the mainstream media has traditionally been unable or unwilling to do.

The second article in Newsweek, "Blind Spot", raises a subtle and fascinating point: what does accessible mean for museums. Since 2008 a Justice Department ruling has forced museums to grapple what accessibility means. Everyone knows (or at least I hope so) that ramps are required by law and have been since the ADA was passed. But in the words of Nina Levent, executive director of New York's Education for the Blind, "The issue is, do people come to museums to ride elevators and use bathrooms, or do they come to have a meaningful social and aesthetic experience". Wow, this was followed a few paragraphs later by "Following the letter rather than the spirit of the law is a problem that some people think has plagued the ADA from the start". I could not agree more with both of these statements but it is nothing less than a shock to read them in the pages of Newsweek. Where I disagree with the article "Blind Spot" is that the author thinks most museums are doing more than the bare minimum. This is simply not the case at museums I frequent like the American Museum of Natural History and the Metropolitan Museum of Art among others in New York City. Bathrooms in staff areas are utterly absent at both institutions. A wheelchair lift on the fourth floor of the American Museum of Natural History in the dinosaur area has been broken for years. More generally, much print information throught both museums cannot be seen from a wheelchair and services for the blind are severely limited. Over the years I have pointed out many problems in the most polite way possible. Not once has the lack of access been corrected. Museum off site tours are often closed to people with a disability and no suggestions are forthcoming about comparable experiences. Newsweek even hints at my criticism noting that "we're not there yet" in terms of equal access. No we are indeed not there yet but if more articles like the two Newsweek published are printed and widely read access for all will come far sooner than I hoped for.

Tuesday, October 20, 2009

Medical Marijuana and Assisted Suicide

Lawyers love precedent and a new and potentially dangerous precedent has been set. Yesterday the Justice Department released a far reaching directive. In the fourteen states that make allowances for the use of medical marijuana federal prosecutors will not prosecute patients and distributors that are in clear and unambiguous compliance with state laws. This new stance on the use of medical marijuana makes sense. Surely people with a demonstrated medical need should be permitted to use marijuana. Clinical studies have proved that the use of marijuana is useful treating the symptoms for a number of medical conditions. More generally, why marijuana is illegal is a mystery to me. Marijuana is part of American culture as much as alcohol use. I don't see anyone suggesting beer should be made illegal. I for one one would like to see marijuana legalized and taxed as heavily as alcohol and cigarettes. But this post is less about marijuana use than it is about politics and the law.

The Justice Department directive is a political statement by the Obama administration--one that cuts in different directions. This decision is the latest in a string of decisions designed to reverse the Bush conservative agenda. As expected, former Bush administrators are not happy. For instance, Lamar Smith of Texas believes the new position on medical marijuana will weaken drug enforcement. Oh, please! Has Mr. Smith been to a college campus recently where the use of marijuana is as common as drinking beer and has been for almost 40 years. Has Mr. Smith been to a high-school recently where marijuana use is equally common. What is of interest beyond archetypical comments such as those that come from Mr. Smith or at the other end of the spectrum the American Civil Liberties Union is that the medical use of marijuana crosses ideological lines. Liberals are delighted medical marijuana use has become easier and patients less likely to be prosecuted. Conservatives, while unhappy about medical marijuana, are delighted that the Obama administration could be perceived as taking a states rights approach. Conservatives love deferring to a state's rights stance.

The states right stance is why I am worried about the larger implications of the Justice Department directive on marijuana use. The Justice Department has provided guidelines and given specific examples of under what circumstances people will be prosecuted. This sounds very close to what was just decided in Britain by the Crown Protective Service with regard to assisted
suicide. When I combine this with assisted suicide as it is being debated by the court in Montana a precedent has been set. While the law may state one thing, prosecution is not likely. In the case of medical marijuana its use has been proven successful in cities like Seattle. Thus it is no surprise that Obama listened to Richard Gil Kerlikoske, former police chief of Seattle now a top drug advisor in the administration. Since Obama has a penchant for making decisions that are designed to please different constituencies could a case be made to let states decide the legality of assisted suicide. This seems to be the growing trend. The medical use of marijuana has popular support nationwide and in some states assisted suicide not only has popular support but has been made legal. Could the legalization of assisted suicide in Washington and Oregon yield the same results that the legalization of medical marijuana has had. In 1996 California was the first state to make the use of medical marijuana legal. Today, fourteen states have passed similar laws. I hate to be alarmist but it seems to me that at first glance most think yes, assisted makes sense. If we can euthanasia a dog why can't we end a person's suffering at the end of their life as well. This is a great sound bite but scratch the surface of the assisted suicide debate and a very different reality emerges. Those that take advantage of assisted suicide are often not terminally ill. Think Daniel James who I have written about many times. While I may value my life, I know others do not. I am not alone. Far too many Peter Singer's of the world are willing to end the the lives of those that are perceived to lack value. Assisted suicide is a step toward eliminating, killing, those we do not value.

Monday, October 19, 2009

Handicapped Parking is Still No For Me

Yesterday I read a story in the New York Times about handicapped parking that gives me a good excuse to update what I wrote about last July: that is l no longer use handicap parking. Apparently California is disturbed by the large number of people that use handicapped parking fraudulently. Governor Arnold Schwarzenegger signed into law a measure that increased the fine for violators of handicap parking. Repeat violators can be fined up to $1,000. California has a car culture that is unique unto itself and it is no surprise to me that the governor is upset. Since 1994, triple the number of California drivers have handicap placards. How dare those crippled people ask for the must mundane of rights! Is wide spread fraud common? Of course it is. Frauds exist in California, New York and every state between. My reaction to this hardly news worthy story is so what. Being unable to find a parking spot is an inconvenience. I have learned a lot about this inconvenience in the last few months. Since July, I have not parked in handicapped once. My political refusal to use handicap parking is going well. I have not gotten hit by a car zooming by me in a parking lot. However, I have wasted a lot of time driving around and around looking for a place to park. I have also dropped groceries pushing my wheelchair to the end of the lot where I prefer to park. I have even been yelled at by strangers who exclaim "You should not be so far away from the entrance. You are a hazard".

The above has led me to wonder if handicapped parking a right or a privilege? More generally, what does handicap parking tell us about disability in American culture. To me, handicapped parking is a privilege. It is the acknowledgment that certain people have trouble physically navigating their surrounding environment. People who are elderly and those that cannot navigate long distances come to mind. People with heart or lung disease who lack adequate circulation or breath also come to mind as do women that are nine months pregnant. But what I do not think of is the poster image for handicap parking--wheelchair users. As I wrote in July, I do not think I have the privilege to park in handicapped parking. Simply put, I am too physically fit. I reject the medical model of disability, one that would legally enable me to use handicap parking. Thus I see handicapped parking as being nothing more and nothing less about a physical impairment. My physical impairment, a spinal cord injury and resulting paralysis, does not preclude me from being physically capable. If I can ski and kayak for miles on end do I truly need handicap parking. In a word no. But am I perceived to be the iconic image for handicapped parking and that is wrong.

The debate, angst and furor over handicap parking says less about car culture than it does about our skewed perception of disability. What causes people to get upset and pass laws about handicapped parking never ceases to amuse me. These same people do not think twice about violating the ADA or the waiting lists for necessary services for people with a disability. No one thinks about institutions that warehouse people with a disability when they could with minimal support live in the community. No one complains about the barriers that exist once people park their cars and cannot enter buildings because there is no access or the "special entrance" is locked. No one wants to know why 66% of people with a disability are unemployed or why so many live below the poverty level. Instead, the average person accepts the medical model of disability without thought. Handicapped parking is for people like me, the chrome police. People like me must be protected. But what is being protected need not be protected at all. I do not care about handicapped parking, I care about my civil rights and those rights are violated on a regular basis. This sort of story is never deemed newsworthy. The iconic images associated with disability are wrong, demeaning and must change. We need to think about much more than handicapped parking. We need to think about the rights of people with a disability and consider them a distinct and insular minority group. We need to break down the barriers between groups of people with a host of different disabilities. We need solidarity. People must unite and handicapped parking is not what we need to rally around. Instead, we need to ask President Obama why he does not have a full time person on his staff working on disability rights (kareem Dale wears far too many hats and cannot do his job well). We need to listen to ADAPT and question why we do not have a Community Choice Act.

I am not sure what I can do aside from write, advocate and teach. Yet I have learned one thing in the last few months. When you don't park in handicapped parking you get a lot less door nicks on your car. No one leaves coffee cups on your hood, gum on your tires, or bangs their shopping cart into your car because they are pissed off you have a better spot to park your car. What I am thinking of doing though is giving up my handicap plates entirely. Yes, that means braving the department of motor vehicles and asking for regular plates. I wonder if I can do this via the mail. If so, my handicap plates are history. If not a trip to the motor vehicle office is in my near future. I will keep you posted.