FOCUSBook reviewed in this article: |
Prescription Pot by George McMahon and Christopher Largen. New Horizon Press, 2003, 224 pp. $14.95 paperback.
'This Precious Cause'
When I started to research this story I contacted the National Organization for the Reform of Marijuana Laws (NORML), explaining who I was and asking whether they could connect me with someone who was both a disability rights activist and a medical marijuana advocate.
NORML suggested one "disabilities advocate" and gave me an email address.
I wrote ... and waited. No response.
I wrote again ... and waited.
I went back to NORML and asked whether they could confirm that I had the right email address -- what looked like his name in the address was spelled differently than the name they'd given me -- and contact him to ask whether he'd be willing to talk to me.
Yes, I had the right email address. No, they weren't going to contact him for me. I should expect him to take a long time to answer, or not answer at all, because he "suffers from cerebral paulsy" [sic]. They did not offer me a second name -- and I never did hear back from the man I had tried to contact.
I would have liked a chance to ask him whether medical marijuana is a disability rights issue, and why or why not. After all, that was the question I was trying to answer; and he's apparently been working on the medical marijuana issue for years, whereas I'm a newcomer to it.
But as I tried to figure out what someone who advocates for medical marijuana and disability rights might tell me -- "Yes, medical marijuana is a disability rights issue" or "No, it isn't" -- I began to wonder whether I was even asking the right question.
Medical marijuana, as it is framed by the sources I found, is not a disability rights issue; but all that means is that the people framing the issue for me aren't motivated by disability rights.
I began to think that I should have been asking not "Is medical marijuana a disability rights issue?" but "Can medical marijuana be framed as a disability rights issue?" And then, "What would a disability rights argument for medical marijuana look like?"
Here is my best attempt at an answer.
A 'gaping invitation to debilitating depression'
In 1972, when he was 24, Robert Randall was told he was going blind. Glaucoma: the fluid in his eyeballs wasn't draining right, and the pressure from the buildup was causing progressive and irreversible damage.
Blindness was not a prospect he welcomed: he regarded the news as a "gaping invitation to debilitating depression" and the appointment during which it was delivered as a "most pessimistic meeting on the future of [his] life."
Some people's glaucoma, Randall learned, can be controlled with available drugs (although there are side effects). But not his: his dosages kept going up, and his pressures still weren't coming down.
Then he found marijuana.
Randall, like some but not all people who say they use marijuana for its medicinal effects, had already smoked it recreationally, and before he was diagnosed with glaucoma he had noticed that it appeared to help his "eyestrain." But why would a drug that the government insisted had no medical use alleviate pressure in his eyeballs? All the same, it worked: and he started growing his own marijuana, and smoking it to control his intraocular pressures and keep his sight.
Then one day he came home from a vacation to find his plants gone and a warrant on his kitchen table.
Changing the law
Marijuana is a Schedule I drug. That means if you're in the USA, you can't legally have it.
Well, almost. There is an
Ritalin and OxyContin are Schedule II drugs: they can be abused, but doctors can still prescribe them. I can't legally have them -- at least at the moment -- but if you've got a doctor who thinks a prescription would help you, maybe you can.
The drug schedules are how our society determines which people can have which drugs for which reasons. Some drugs, like caffeine and unregulated "supplements," are legal for anybody; some, like tobacco and alcohol, are legal for anybody over a certain age; some, like marijuana, are legal only for IND users; and then there is a range of drugs available by prescription and classified in different ways, according to how carefully the government wants their distribution controlled.
The medical marijuana movement -- which is related to but distinct from the movement to legalize marijuana outright -- wants to find a way to make marijuana available to patients whose doctors think they should have it.
In some states, California being the first, laws have been enacted to authorize some people to grow, have, and use marijuana for medical purposes. These are primarily symbolic laws because, no matter what the states say, growing, having, and using marijuana is against federal law, and the feds have been perfectly willing to charge people who are in compliance with their state medical marijuana laws.
Thanks to a recent 9th Circuit Court of Appeals case, your doctor probably can tell you if he or she thinks marijuana might help you in some way. But then you've still got to decide whether it's worth the risk.
Congressman Barney Frank, a Massachusetts Democrat with strong liberal credentials, has been pushing for a states'-rights solution to the problem that would require the feds to abide by individual states' medical marijuana laws. The 9th Circuit seems to think that states'-rights protections already mean a state medical marijuana law can protect users from the federal laws; but the Bush administration (which has often accepted the idea that states' rights come before civil rights but apparently doesn't agree that states' rights come before the War on Drugs) may yet appeal.
Lester Grinspoon, MD, and James B. Bakalar, co-authors of Marihuana: The Forbidden Medicine, are convinced that the benefits significantly outweigh the harms (they argue, among other things, that it's significantly safer than tobacco, which I can legally buy just down the block) and that a system that permits some uses and punishes others is just too complicated for regulating plants, want the drug legalized outright as the best way to make it available to medicinal users. Other advocates want it rescheduled at the federal level, so that it is available for medical but not recreational use.
Several other nations have already eased up on marijuana use: the British government, for example, has decided that illegal marijuana use doesn't justify the same level of enforcement as illegal use of heroin and cocaine, or even amphetamines and barbiturates.
But so far the word from Washington is that you can't have it. Even if you think it might be good for you. Even if your doctor thinks it would do you good. Even if you have (illegally) tried it and know that it'll alleviate your nausea or pain or make you want to eat again. Get caught, get punished.
If I have a right to something, somebody else has a corresponding duty to either provide it or at least not get in the way of my having it. My right to free speech means that the government can't stop me saying what I want. A disabled child's right to an education means the local school board has to provide or purchase one.
Libertarians have a very narrow view of what counts as a duty, and therefore a very narrow view of what counts as a right, except that we all have a right to be free from most government interference. Laws prohibiting murder are okay -- they'll recognize your right not to be murdered -- but laws requiring property owners to install ramps are not. What you do with your body and your property is your business until it infringes on someone else's rights; and libertarians don't think all that much counts as infringement of someone else's rights.
Some disability groups -- for example, members of the psychiatric survivor and self-advocacy movements -- protest that with the disability designation comes a loss in rights. Guardianship and conservatorship, incarceration for crimes that might be committed in the future, forced druggings and electroshock, and deeply entrenched paternalistic "care" that limits the lives of the people being "cared for" are all potential consequences of being assigned to certain disability categories.
People whose primary concern with disability rights is that the government not interfere with their lives because they have a diagnosis may use a libertarian formulation of disability rights: that inability and impairment do not justify government intrusion.
Those people who want existing practices to change to remove barriers, on the other hand, are unlikely to find much help from a libertarian account of rights and duties: your right to a ramp means only that people can't stop you building one on your own property, to put it bluntly; and while it might be nice to support people who cannot find a job at a living wage, and while many libertarians might choose to give to a charity set up for that purpose, the government has no right to force people who can make a living with their minds, bodies, and property to subsidize those who can't.
I have a hard time imagining what a libertarian argument for medical marijuana would look like, because I have a hard time imagining why -- other than as part of a larger political strategy -- libertarians would feel the need to distinguish between medical users and recreational users of marijuana. (Non-libertarians are more likely to sign onto a libertarian program if they are convinced that by doing so they can help good people who need marijuana than if they think they'll be making it easier for disreputable people to abuse it.)
As long as it's my drugs affecting my mind and body, and my land that I'm smoking it on, a libertarian account would run, it's my business. If I'm not growing the stuff myself, of course, I may have problems finding someone who's willing to give, sell, or trade it to me at a price I like; but if I can, it's nobody else's business.
Disabled people, as it stands, face neither more nor fewer official restrictions on marijuana than anybody else; and if the nation were reconstituted along libertarian lines restrictions would be lifted for everyone, disabled and non-.
'Any sane soul'
Robert Randall decided that his defense on the drug charges was going to be "medical necessity": faced with a choice between illegally growing and using marijuana or going blind, he chose to break the law. "Essentially, a simple argument," he said, "that any sane soul who is going blind would break the law to save his sight."
His lawyers told him to prove that he was really choosing between marijuana and blindness. He did, going first to UCLA and then to Johns Hopkins (the National Eye Institute turned him down) to investigate exactly what marijuana did to his eyes, and whether any other treatment would be effective. None of the legally available therapies worked for him, and marijuana did.
With that proof, he prepared to go to trial (he was acquitted). But he also took another step: he petitioned the federal government to provide him with a supply of marijuana. And they -- presumably to prevent him growing, buying, or selling the stuff, and out of "compassion" -- agreed to provide him with a supply of marijuana for medicinal use under the Investigational New Drug program. By the end of 1976, Robert Randall had pioneered a new way to legally smoke marijuana.
But if you believe marijuana would help you and you're thinking you can go that route, you're out of luck. Word got out; applications for the "compassionate" IND program increased; the federal government cracked down. With a 1978 lawsuit that was rapidly settled, Randall managed to ensure that his shipments would keep coming. But the government hasn't approved a "compassionate" IND marijuana user in years, according to federal marijuana user George McMahon; and once the current IND users die, if nothing changes, nobody in America will be able to legally smoke marijuana.
Until his death in 2001, Randall worked to educate other people about what he regarded as the medical benefits marijuana could provide, and to try to make it legally available for medical use.
Writing in the preface to the 1993 edition of Marihuana, doctor Leonard Grinspoon reports that when he started investigating marijuana in 1967 he was sure that it was "a very harmful drug that was unfortunately being used by more and more foolish young people who would not listen to or could not understand the warnings about its dangers." By the time he published Marihuana Reconsidered in 1971, he no longer believed that.
After reviewing the information available to him, he had come to believe that in fact marijuana was not an especially harmful drug -- certainly less dangerous than some of the drugs that were then and are now routinely prescribed -- and that it has benefits.
Many users, he says, regard it as life-enhancing, and in particular it has medicinal uses: aside from smoking it to relieving excess ocular pressure, Grinspoon and his co-author Bakalar report in Marihuana that people have used it to stimulate appetite, fight nausea and vomiting, mitigate spasms, manage pain, control seizures, relieve tremors and minimize loss of muscle control, control severe itching, and improve moods.
On the other hand, the Drug Enforcement Administration counters that marijuana has long-term health risks for users; that it is addictive and that it functions as a gateway drug; that any medical benefits can already be achieved, better and more safely, by already-available drugs; and that medical marijuana advocates are using the issue as a "red herring" to camouflage their real goal of outright legalization.
There is a great deal of disagreement about the facts and what they mean for society between medical marijuana supporters and detractors, and within each camp.
At first glance Marinol may look like a compromise drug. Marinol is oral, synthetic, THC (THC is the main psychoactive substance in marijuana), and it's available for prescription right now. But some marijuana users say Marinol is not as good.
Because you swallow Marinol, proponents have noted that it doesn't come with the risks that smoking anything does. Critics, on the other hand, report that it's harder to control the dosage because it's only available in 2.5, 5, and 10 milligram capsules, that an inhaled drug gets into the bloodstream faster than a swallowed drug, and that swallowing a drug to control severe nausea and vomiting is an invitation to throw it back up. (When Marinol is prescribed for chemotherapy-related nausea, it is recommended that patients take the Marinol long enough before starting the chemo that it's already working before the nausea hits.)
Nausea is one of the reasons IND patient George McMahon uses marijuana, and he's accustomed to small doses throughout the day. I asked him whether an injected medicine would work for him. No, he said. "Needles and pills would not be an option for me. It is small amounts of these compounds administered at the correct time that make life bearable. No heavy drugged sensation. Just steady relief with adjunct relief available immediately. On the other hand, would sublingual spray or drops be acceptable? Yes, providing they worked as does the inhalation of very small amounts works when smoking, and if the same effect was [achieved] with no more side effects."
Because it's synthetic -- it's made in a lab, not extracted from marijuana plants -- proponents note that Marinol is pure. Smoked marijuana contains a whole range of psychogenic substances in addition to THC. When you buy illegally, you can't be sure of the product's THC content -- or even whether anything has been added. Michael D. Lyman and Gary W. Potter, authors of a textbook on organized crime, indicate that in 2000 commercial grade marijuana typically contained about 6 percent THC, the higher-quality sinsemilla variant had about 13 percent, and a high-quality Canadian product can have THC levels of 15-20 percent.
Critics, on the other hand, argue that some of the benefits of marijuana may be due to some of the psychogenic substances that aren't duplicated in Marinol, either on their own or in combination.
Although Marinol is used for some of the same symptoms as marijuana, it seems clear that the people pushing to make marijuana available for medical purposes do not regard Marinol as an acceptable solution.
Sativex, a marijuana extract spray that is not currently available in the United States, might be a better one, although Grinspoon still does not think it's good enough, arguing that while it's an under-the-tongue (sublingual) drug and absorbed faster than one that is swallowed, Sativex still isn't absorbed as fast as smoked marijuana and therefore users don't have the rapid feedback needed for them to control their doses precisely.
So neither Marinol nor Sativex is technical solution that will satisfy everybody. But even if one were found, this issue would just show up again with different drugs.
Ecstasy, a Schedule I drug, is believed by many people to have legitimate psychiatric uses. A psychiatrist in South Carolina is currently investigating whether it works better than placebo in treating women with post-traumatic stress disorder.
Ephedra , recently pulled from American over-the-counter shelves out of concerns about its dangerousness, is associated with at least short-term weight loss.
Meanwhile, safety concerns have been raised about selective serotonin reuptake inhibitor (SSRI) antidepressants in children, and in particular about the link between SSRI use and suicide. But there's no consensus: some researchers claim that depressed children who do not receive medication are in greater danger of suicide than those taking SSRIs.
Weight loss and the treatment of depression and post-traumatic stress disorder are legitimate medical goals in America today. The challenges of crafting public policy so as to balance the perceived benefits and risks of drugs are not new with marijuana, and even if we come to a consensus on how to handle marijuana, disagreement over other drugs is certain to continue.
George McMahon has Nail Patella Syndrome (NPS) , although he wasn't diagnosed until he was in his late thirties. What he knew, growing up, is that he sustained serious injuries from seemingly minor incidents, that he came down with more serious illnesses than other kids, and that life includes pain.
He also grew up with both appropriate and inappropriate medical care, with doctors putting out fires one by one without understanding why they flared up in the first place. There were a lot of surgeries, a lot of drugs. One drug that he took without prescription was marijuana: he started in the 1960s because, simply, it made him feel better.
"I was more alert, my pain was not as debilitating and it was easier for me to move around," he reports in Prescription Pot: A Leading Advocate's Heroic Battle to Legalize Medical Marijuana, the book he co-wrote with Christopher Largen. "The spasms I suffered, particularly in my legs, which prevented me from sleeping eased after smoking marijuana and my legs didn't dance around all night."
But he didn't then credit the drug with any real medical benefits; he figured it was a side effect of "euphoria."
"My thinking changed," he says, "when marijuana literally saved my life."
Heroes in white coats
Do you remember Quincy, the public-spirited TV hero of Quincy, M.E. ? In one hour (minus commercials), aided by his longsuffering assistant Sam, Quincy could perform an autopsy, discover a social issue, educate himself about it, and use his position in the medical examiner's office as a bully pulpit to at least start making changes.
Policymakers listened to Quincy even when they'd been ignoring the people who'd educated him: doctors know what's good for us.
One thing to keep in mind when we're talking about medical marijuana is that it's medical marijuana. With very few exceptions -- Grinspoon and Bakalar, for example -- medical marijuana advocates aren't talking about letting you and me decide whether marijuana makes our lives better. They're talking about giving our doctors one more tool to use as they decide how to make our lives better.
Call it the Quincy principle: doctors know what's good for us. Heroes in white hats are out-of-date: now they wear white coats.
But there is another dimension to the insistence that certain decisions should properly be made by doctors: power.
In Deviance and Medicalization: From Badness to Sickness, authors Peter Conrad and Joseph Schneider explore the medical profession's increasing authority over a range of things that used to be someone else's business. It is significant that some social problems -- madness being a good example -- are medicalized before medicine has found a way to solve them. Medicine promises what appears to be a benevolent, humanistic, and morally neutral system of control; people think that through medicine a better solution may be found soon.
In fact medicine's control of social problems is not necessarily benign, not necessarily humanistic, and never morally neutral. Consider the debate over cochlear implants for deaf children: the medical solution does allow some children to use sound more effectively, but at the cost of residual hearing. After implantation, the children and their families have to work hard to learn to use the implant, and that means a predominantly oral environment. Oral environments can alienate deaf children from Deaf culture which, unlike hearing culture, is fully accessible to most of them. Invasive surgery and partial access to hearing culture, instead of education and full access to Deaf culture only makes sense if we agree that hearing is better than deaf, and that's a value judgment.
The idea that doctors are wise, that they can see what really ought to be done without imposing their values on other people the way the rest of us do, is a big part of the allure of such politicians as Howard Dean and Bill Frist. It's also a big part of why doctors and other diagnosticians play such a big role in such diverse areas as figuring out who should be given food and water , what kinds of barrier removal is appropriate on college campuses , and whose wishes to live outside institutions should be honored.
But there are people who don't buy into the Quincy principle, who dispute the idea that the rule of medicine is a roadmap to justice; and many valuable critiques of the Quincy principle arise from one facet or another of disability rights, disability studies, or disability culture.
'Marijuana saved my life'
Marijuana saved George McMahon's life, he says after major surgery had left him "lying like a gutted fish in my hospital bed." The prescription drugs he'd been taking had left him nauseated enough that he hadn't eaten solid food for a month and in enough pain that he hadn't slept in six weeks. A doctor had just told him he was going to die within hours.
Then someone came into his room with a message from a guy dying of cancer down the hall: would he trade a cigarette for a joint?
Yes, he would.
"Fifteen minutes after smoking that joint," McMahon says, "I picked up the phone and dialed the nurse station, begging for solid food. It was the first time I had experienced an appetite in a month."
He ate some raw vegetables. Then ice cream. Milkshakes. More ice cream. The next morning, for breakfast, bacon, eggs, and potatoes.
Three days later, the cancer patient died, and when the weekend rolled around, McMahon went home.
The social model
In January 1962, a resident of the Cheshire Home at Le Court (in England) approached a researcher at the Tavistock Institute, proposing that some research be done into the situation of people living in institutions for "the physically handicapped and young chronic sick." A decade later, the result of the research that was eventually undertaken came out: E.J. Miller and G.V. Gwynne's A Life Apart: A Pilot Study of Residential Institutions for The Physically Handicapped and The Young Chronic Sick.
The authors noted that there were people in institutions who needed less physical assistance than did some living in the community, but whose support systems had given out. Even so, they'd taken it for granted that there would always be people who, because of physical incapacity (not a malnourished support system), would need to live in institutions; and they had therefore asked how those institutions could help residents cope with the period between the "social death" that coincided with permanent entry into an institution and the physical death that came only later.
A Life Apart was not the book the Le Court residents had hoped it would be: they responded to it both politically and intellectually, prising apart those factors of (physically) disabled life that they regarded as inherent in their bodies from those that they regarded as socially imposed, and defining
impairment as lacking part of or all of a limb, or having a defective limb, organ or mechanism of the body; and disability as the disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. Physical disability is therefore a particular form of social oppression.
Subsequently, the definitions expanded to include all disabled people within the social model.
They challenged the idea that institutionalization and "social death" was an inevitable consequence of impairment. No, they said: that's disability; and society, not impairment, disables us. Moreover, society is wrong to do it: disability is injustice and should be eliminated.
The idea of disability rights that arises out of the social model suggests that disability rights is the right not to be disabled; in other words, not to be oppressed in the characteristic ways that impaired people are oppressed.
It's possible to view medical marijuana as a way to address impairment but not disability (in the social model sense), and to conclude that therefore a social-model disability-rights approach to medical marijuana cannot be made. This was, actually, the first thing that occurred to me.
But a number of writers -- Eli Clare's Exile and Pride: Disability, Queerness, and Liberation is one of my favorite examples because it's beautifully written, nuanced and clear -- have noted that while distinguishing impairment from disability makes sound theoretical sense (and allows us to clearly refute the idea that disabled lives are marked by tragedy but not injustice), it can be hard in the course of everyday lives.
I began to wonder about the argument that denying disabled people access to tools for managing impairment might be construed as a form of oppression.
Compassionate IND User No. 5
Even after George McMahon failed to die as predicted, he wasn't really sure that marijuana had saved him: it could have been a coincidence. Another coincidence -- a friend of his showing up wanting to trade a large bag of marijuana for an old car -- gave him the chance to test the connection.
He smoked a joint, and felt better. Then he spent a week using an alcohol extraction process to improve the potency, then smoked another joint. "That night," he says, "I threw away all my pain medication."
McMahon began to work with his doctors to find a way around the expense, unpredictability, and risk of breaking the law for symptom relief, and discovered he needed to ask the federal government for permission. Meanwhile, McMahon's wife tracked down Elvy Musikka, the third IND marijuana patient, and Musikka suggested he call Robert Randall.
A lot of paperwork and one more experiment to see what would happen without marijuana (17 pills, 3 times a day, with "incapacitating" side effects is what happened) later, George McMahon, the fifth IND user, got his first tin of federal marijuana.
Affirmative disability rights
Disabled people are those whose disadvantage within and exclusion from society is blamed on medical causes; so unquestioning application of the Quincy principle -- that doctors know what is best for us -- to our lives is a matter of concern for us.
We should pay attention when it is limited to deciding how our bodies and minds ought to behave, when for example they urge people to walk instead of roll even at the price of pain and exhaustion, when they recommend that speechless communication be banned , when they advocate inflicting pain and lifelong institutionalization.
We should also pay attention when they prescribe how society will address disadvantage and exclusion. The ADA includes the idea that we have trouble learning, working, and living "in the community" not, as a social model account would have it, because our society invisibly supports learners, workers, and households with characteristics that only some individuals and families possess; but rather because our own deficits "substantially limit" us.
There are significant downsides to this version of disability rights, not least because telling society that justice for disabled people is a medical problem suggests that we are what really needs to be fixed. But at the same time, explaining that society is unjust to disabled people in a medicalized language of disability rights can let us tap into physicians' social power.
In the past I've distinguished between positive and negative liberties, the freedom and the tools to do something and the freedom from interference in doing it. I have, since that time, been rethinking that distinction: it now seems to me to depend on a neutral situation within which to act. For example, freedom from government interference with my speech means little in practice if I'm denied access to the tools (including language) that are necessary for me to communicate.
I've come to think, too, that the libertarian argument for disability rights, as powerful as I find it when it comes to such things as civil commitment and guardianship, depends on an assumption that certain features of society are just, or nearly so, to start with. I do not believe that to be the case.
Once the stairs are built, once the default document format and language have been decided, once the social rules have been tacitly accepted by the powerful but not communicated to those at risk of breaking them, once conventions about what can be and what is owned, and by whom, have been put in place -- once, in other words, any steps have been taken towards shaping the physical and social involvement -- the environment can no longer be assumed to be a good approximation of a just environment that just needs to be tweaked. It may be a good approximation of a just environment ... or it may need to be radically changed.
If we cannot assume something very like justice, the "hands-off" libertarian approach to disability rights may simply be a way to unintentionally encourage the continuing oppression of other disabled people -- as indeed may be the "tweaking" approach that assumes "the playing field" (a metaphor for a competitive society in which the first fruits go to those who best combine ability and effort) is almost level (and just) and needs only a little adjustment. And if we don't have something very like justice, we need to consider what affirmative steps would move us toward the ideal.
What would a medical marijuana argument look like in the context of an affirmative approach to disability rights? I think it would look very similar to one using a social model approach: without access to the tools to manage impairment, some disabled people cannot take advantage of society's benefits to the extent that justice demands; just as without access to powerchairs , some people who can manage with a manual chair inside their own homes cannot take advantage of society's benefit to the extent that justice demands; just as without freedom from psychiatric power (which some people take for granted and others cannot), no one can take adequate advantage of society's benefits; just as ....
But then again, in a society in which the disadvantage and exclusion of disabled people is still understood, even by many disability rights workers, in medicalized and individual terms, we run up against a familiar Orwellian version of the Quincy principle: psychiatric survivors know well that force is advertised in some places as a prerequisite to the exercise of free will; self-advocates are no strangers to the insistence that only through segregation can they have a full range of relationships; and Deaf leaders have long opposed the idea that only by denying children a language that comes naturally to them can we teach them to communicate.
George McMahon, disability rights leader?
So all right: is medical marijuana a disability rights issue? I haven't found a good disability rights formulation of the medical marijuana issue, but I think one could be made; I think, however, that an affirmative formulation of disability rights, such as medical marijuana would require, would need to be carefully scrutinized, because a very similar formulation has been given to support things that are quite clearly opposed to disability rights.
George McMahon was the fourth person to follow Robert Randall into the IND program, and one of the very few still alive; he gets 300 government joints a month, and he smokes them as necessary to manage his physical symptoms: there are still many things he cannot do, but there are fewer now than before he started smoking, and he can enjoy his life and his family and his friends and the work that he does to change public policy.
McMahon reports that is grateful that he can use marijuana to control his symptoms without risking jail or prison. "Not every patient has been so lucky," he says in Prescription Pot. "Many languish in prison for their use of black-market marijuana. Others were forced to stop using medical marijuana and died because of it.
"Until all patients are able to receive the medicine they so desperately need, I will not stop speaking out, traveling the country and fighting for this precious cause."
Posted March 15, 2004.
A Note on Sources and Further Reading
Background on drug policy and issues:
David T. Courtwright's Forces of Habit: Drugs and the Making of the Modern World was my first guide in understanding how the current system evolved.
I found Michael D. Lyman and Gary W. Potter's book Organized Crime (3rd Ed.) very helpful in filling in a lot of gaps in my background about drug enforcement.
The medical marijuana issue:
In 2003, George McMahon and Christopher Largen published Prescription Pot: A Leading Advocate's Heroic Battle to Legalize Medical Marijuana, a personal account of McMahon's medical marijuana use and advocacy. I've read (and written) enough political polemics to be wary of any document whose subtitle describes a co-author's work as "heroic," but I was very pleasantly surprised: it's clearly written, well-paced, and both a good account of why (and how) McMahon pursues his cause and a good story. Except where noted otherwise in the text, where I have quoted George McMahon, I have quoted from this book.
Other personal accounts -- most notably a few pages by Robert Randall, from which all direct quotes in this article are taken -- can also be found in Lester Grinspoon, M.D., and James B Bakalar's 1993 book Marihuana: The Forbidden Medicine (an updated edition was published in 1997), which also includes an explanation of the history, an argument that outright legalization is the best way to balance the needs of some patients to use marijuana and the needs of the community to prevent dangerous drug abuse.
The book that triggered the social model backlash was E.J. Miller & G.V. Gwynne's A Life Apart: A Pilot Study of Residential Institutions For the Physically Handicapped and the Young Chronic Sick.
Miller and Gwynne described the "warehousing" and the "horticultural" models of institutions. Warehousing institutions defined residents in terms of their diagnoses and physical needs, and stressed the physical care provided. Horticultural institutions on the other hand regarded residents as people in need of development, and regarded physical care as something that needed to happen, but not the primary goal of the institution.
A good account of a horticultural institution from roughly the same period (though the book was published a decade later) can be found in Irving Kenneth Zola's, Missing Pieces: A Chronicle of Living With A Disability. It is worth noting that if you take the horticultural model and change the assumption that disabled people need to be segregated and congregated in institutions to one in favor of integration and dispersion within broader communities, you get something very much like the independent living model in use in America today.
A brief account of the Le Court residents' response to Miller and Gwynne's work, and one that is considerably different than Miller and Gwynne's account of their dealings with residents, is available in Vic Finkelstein's article "Disability: An Administrative Challenge," available at the Disability Archive at the University of Leeds.
An early and important social model document -- clearly rejecting the assumptions underlying both the horticultural and warehousing models -- is the Union of the Physically Impaired Against Segregation's Fundamental Principles of Disability, which is also available at the Disability Archive. It is from Fundamental Principles that the definitions of impairment and disability quoted here are taken.
Most recently, the Disability Press (attached to the Centre for Disability Studies at the University of Leeds) has announced the publication of a new collection, Implementing the Social Model of Disability: Theory and Research, edited by Colin Barnes and Geof Mercer.
There are several American writers who draw explicitly on the British social model; one of my favorite social-model-influenced books is Eli Clare's Exile and Pride: Disability, Queerness and Liberation.
Peter Conrad and Joseph W. Schneider's Deviance and Medicalization: From Badness to Sickness (Expanded Edition) is a fascinating book that I've found very helpful in understanding the medicalization of disability rights: the authors look at the rise of medical explanations for deviance ("condemnation and negative judgment which are constructed and applied successfully to some members of a social community by others") in a collection of case studies, and offer a theoretical explanation for such medicalization. The section on the medical model of madness has been helpful as I try to think through what is meant by "the medical model of disability."
Pharmacracy: Medicine and Politics in America , by Thomas Szasz, is fascinating for its insights into both how medical authority is used against disabled people and how it is used by us. (As a libertarian, he opposes both.)
Another book that is helpful in understanding libertarianism in general is Robert Nozick's Anarchy, State, and Utopia.
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