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Disability Culture: Defining Our Lives

Bint Alshamsa

In the comments of another post that I wrote a few days ago, a few people questioned the idea that Elizabeth Edwards’ cancer is incurable but not terminal. Different authorities were cited and used as the basis for how the commenters defined what conditions should rightly be called “terminal”. Some appealed to legal definitions of it. Others saw doctors as the experts on this topic. Really, this is nothing new. It’s an issue that PWD (people with disabilities) have been speaking out about for many, many years.

Why is it those who do not have the condition are considered the experts on how it should be viewed? Sure, I can accept the fact that doctors are experts on how to treat diseases like cancer. However, does that make them qualified to determine how diseases should be viewed? I’m not so sure about that. Instead, I wish people would consider the fact that PWD are perfectly capable of deciding how they should view what’s going on with their body. It’s more than a little bit paternalistic to try to make that decision for us.

It seems that non-disabled people sometimes have a hard time understanding that disability is cultural, not medical. What is seen as a terminal illness to some certainly isn’t to others. For example, let’s say the average lifespan for an individual in a particular place is 50 years old and the patient is already 50 years old, should we call a disease that is likely to kill them within ten years one “chronic” or “terminal”? After all, we all die of something. Should we call whatever might kill us (e.g. diabetes, pneumonia) “terminal”? Why are the lives of people with cancers like the ones Elizabeth Edwards and I have described as terminal when others are not even though they may all result in death eventually.

The truth is, there’s a whole lot of room between incurable and terminal and that gap is only widening as I’ve experienced first hand. For many people, cancer is quite manageable even when no cure can be expected. Because so much of medicine is focused on curing people, when a patient has conditions that can’t be wiped out, it’s often viewed as a failure. However, there’s no reason why our lives should be measured according to the lives of others for several reasons. What’s considered a normal lifespan has varied through the ages and still varies throughout the earth. But who decides what’s normal? In an ablist system, what’s normal will almost always be defined as that which meets up with non-disabled people’s lives.

15 thoughts on Disability Culture: Defining Our Lives

  1. Why is it those who do not have the condition are considered the experts on how it should be viewed? Sure, I can accept the fact that doctors are experts on how to treat diseases like cancer

    If you can’t view a disease you can’t treat it — which means that if you can treat it, you’re viewing it properly. I think the term is “contrapositive.”

    Should we call whatever might kill us (e.g. diabetes, pneumonia) “terminal”?

    Look at a death certificate and ask yourself why it has three lines for cause of death. When physicians use the words mortality and terminal, we’re using it in a very specific, technical sense that resolves the problems you raise.

    Why are the lives of people with cancers like the ones Elizabeth Edwards and I have described as terminal when others are not even though they may all result in death eventually.

    They’re considered terminal because it’s above the threshold for the percent of patients who die within a fairly short, specified period of time — usually five years — and is the ultimate underlying cause of death. (But the reason why cancer’s a bit different from the five years is because the apparent improvement in cancer mortality is ultimately due to a statistical artifact. Once you account for lead time bias caused by increased screening and politically-motivated administrative changes in medical definitions, most cancer patients don’t pass the five year threshold.)

  2. Why is it those who do not have the condition are considered the experts on how it should be viewed? Sure, I can accept the fact that doctors are experts on how to treat diseases like cancer. However, does that make them qualified to determine how diseases should be viewed? I’m not so sure about that. Instead, I wish people would consider the fact that PWD are perfectly capable of deciding how they should view what’s going on with their body. It’s more than a little bit paternalistic to try to make that decision for us.

    this is so so so important, and such a big part of why I’m glad you accepted the offer to guest-blog here – it’s wonderful to have the voice of a PWD on this issue.

    My background on this issue was as an attorney with a national disability rights non-profit, and we did a great deal of opposition activism to the the California law. Another problem with the inclusion of the six-month time frame in the OR and (proposed) CA laws is that doctors are routinely incorrect about prognoses, and even about diagnoses.

    anyway – thanks again for posting this.

    also ps – your last line – “In an ablist system, what’s normal will almost always be defined as that which meets up with non-disabled people’s lives.” – is so right-on.

  3. I think this is a very important, interesting, and insanely complex topic. It ties into our cultural fear of death, desire for control, obsession with youth, in addition to everything you have already written about so beautifully.

    I don’t have much to say, here, as this is something I struggle with, both simply in contemplating morality and through my confrontations with my abled privilege. But thank you, for providing some excellent food for thought.

  4. “The truth is, there’s a whole lot of room between incurable and terminal and that gap is only widening as I’ve experienced first hand.”

    So true- my cousin has cystic fibrosis. When she was born, my aunt was told that cousin would live to be 5, maybe. Then, technology and treatment options started to change- when she was 5, we were looking at 12. When she was 12, she’d definately live to get through high school. My cousin is now older than 30, in the past, somebody with CF never would have accomplished that. I would never tell somebody that my cousins condition is ‘terminal’, I would call it ‘incurable’.

  5. However, does that make them qualified to determine how diseases should be viewed? I’m not so sure about that. Instead, I wish people would consider the fact that PWD are perfectly capable of deciding how they should view what’s going on with their body. It’s more than a little bit paternalistic to try to make that decision for us.

    I definitely agree that no one should have the gall to tell (for example) Elizabeth Edwards that the way she’s viewing her disease and her body is wrong. But it’s a bit murkier, for me, when it comes to more general statements of how disease should be understood in society.

    For one thing, someone who is not visibly or self-identified as a PWD could still be a PWD. There are many reasons some PWDs don’t want to disclose their diseases publicly.

  6. For one thing, someone who is not visibly or self-identified as a PWD could still be a PWD.

    If you are saying that certain objective facts about the way a person’s body or brain functions are sufficient to define them as PsWD with or without their say-so or self-identification, okay. That makes some sense to me. But it is no different from saying that certain objective medical facts about someone’s illness are sufficient to have it reasonably described as terminal, whether they like that word or not.

    So I don’t see how you can make that assertion but still want to agree with bint.

  7. Sophonisba,

    Are we really dealing with “objective medical facts” or arbitrary determinations? I’d say it’s certainly the latter. What I wrote in this post and the other one has absolutely nothing to do with whether I like the word “terminal” or not so what you’re saying about that is simply a red herring.

    In a desert environment not being able to swim might not even inconvenience one. However, if you live on a ship, not being able to swim could definitely be disabling. Last year, there was the case that made the news that involved a little girl named Lakshmi Tatma. This girl was born with four arms and four legs. However, did the people where she live consider her disabled? Nope, instead she was venerated as holy and the folks where she lived even erected a temple for her. Were they wrong not to view her as disabled? After a few years, doctors removed two of the arms and two of the legs. However, if they did not do so, there’s a good chance that she would have died from her condition eventually.

    Does this mean she was “terminally ill”? Well, in a normal situation it would certainly be no surprise if death resulted. After all, there are very few people in Lakshmi’s community who would have been able to afford a surgery that cost over $600,000. However, an organization stepped in and paid for the needed surgical procedures. That leads me to ask, does your ability to afford proper treatment determine whether or not one should be considered “terminally ill”?

    The ability to get better than average care, as is the case with Elizabeth Edwards, can certainly affect how long one one will be able to live with cancer. The majority of people with the ultra-rare kind of cancer that I have aren’t even able to access the same treatments that I could choose from.

    Even if 80% of people with my cancer die within five years (this is just an example, the actual percentage is much lower), does this number truly represent how deadly the disease is or does it represent how few patients receive the needed treatment? The only way we can know for sure is if all of those with a particular cancer actually do receive the same treatments that some of us have.

    So you see, while survival rates can be applied to diseases, they simply can’t predict how long a particular individual is likely to live because that depends on a lot of factors that can’t be accounted for by using the survival rates for the entire group of people who have the disease.

    Also, what’s “reasonable” is extremely subjective. Some think it’s reasonable to perform a major surgery on a seventy-five-year-old person. Some think it isn’t reasonable at all. Is there any reason why we should adopt your opinion of what’s reasonable instead of the views of those who are actually living these experiences? And given the fact that the society we live in tends to value the views of PWD as less significant than those of non-disabled people, why should PWD go along with this blatant ablism? This is no different from a man telling a woman how she should view her body or a white person telling a person of color how they should view their experiences or a rich person telling an economically-disadvantaged person how they should view the subject of poverty.

    Even if you don’t want to acknowledge it, people with disabilities have the right to be self-defining. I certainly don’t see attempts to deny that right as reasonable in any way. PWD have no responsibility to collude with the system (and its advocates) that’s responsible for the oppression of our sisters and brothers.

  8. “does your ability to afford proper treatment determine whether or not one should be considered “terminally ill”?”

    And: “Because so much of medicine is focused on curing people, when a patient has conditions that can’t be wiped out, it’s often viewed as a failure.”

    I don’t have cancer; I have ESRD (kidney failure). For now, I can afford treatment for this in the form of dialysis. However, there is a lifetime maximum cap on our group health insurance of two million dollars. Once that is reached, I will no longer be able to afford dialysis, even with Medicare coverage (which almost everybody with ESRD in the U.S. qualifies for), because we will be on the hook for 20% of everything. It adds up quickly. ESRD cannot be cured; it can only be treated. Even transplantation is a treatment and not a cure. (And if I get one, I’ll still eventually max out our insurance, and then I won’t be able to afford the anti-rejection drugs which cost over $20,000 a year, and will lose the kidney.)

    So I’m getting reconciled to my decision that I’m not going to bankrupt our family with my medical costs. I’ll go on hospice when I max out the insurance and that will be the end of that fairly quickly.

    At what point does my condition become terminal, or does it? My natural lifespan is being artificially extended by means of dialysis; it’s the only thing keeping me alive.

    So yeah, I’d say one’s ability to afford treatment does determine whether one is terminally ill or not.

  9. River,

    It pains me to my very core that people like you have to make these kinds of decisions. When to seek hospice was an agonizing issue for me. I’ve been given a temporary reprieve; my cancer isn’t showing any growth right now and I have no metastasized spots yet. Still, I am not cured. I still have cancer so the sword of Damocles never disappears.

    That’s one of the reasons why me and my life-partner can’t marry. My health care eligibility would change and his insurance wouldn’t cover all my pre-existing conditions. I know several couples who have quietly opted to get a legal divorce in order for the disabled person in the marriage could qualify for more government services that they’d be ineligible for even if their non-disabled mate had a job that barely paid enough to pay the rent/mortgage and keep the utilities on each month. I can’t say I blame them. I don’t think there are any limits to what I’d be willing to do in order for my partner to get whatever health care he needed to stay alive.

    I don’t know how what options you’ve explored but if you ever do want to brain-storm with someone, feel free to drop a message in my blog under any post. If you send me your e-mail address, we can chat that way. Don’t worry, I won’t post the comment on my blog.

    But, yeah, back to the issue in the post: I do think that ability to afford treatment does or at least should be seen as playing a significant role in whether one is viewed (or referred to) as being terminally ill.

  10. The ACS cancer statistics are only recorded for those who are receiving treatment, not for those cases that are never discovered until death or those patients who decide not to get treated after diagnosis.

  11. For one thing, someone who is not visibly or self-identified as a PWD could still be a PWD.

    If you are saying that certain objective facts about the way a person’s body or brain functions are sufficient to define them as PsWD with or without their say-so or self-identification, okay. That makes some sense to me. But it is no different from saying that certain objective medical facts about someone’s illness are sufficient to have it reasonably described as terminal, whether they like that word or not.

    I think I was unclear. I was trying to describe the example of someone who has a disease, and thinks of themselves as a PWD, but doesn’t choose to share that fact with others (for instance, in an online forum like this one).

  12. At what point does my condition become terminal, or does it? My natural lifespan is being artificially extended by means of dialysis; it’s the only thing keeping me alive.

    Unfortunately, dialysis is a poor substitute for real kidney function, most nephrologists estimate that its only about 10% as effective as a functioning kidney.

    People who start dialysis have an average lifespan of only 10-15 years before the ESRD-related complications overwhelm them. Defining ESRD as “terminal” is somewhat tricky because 10 years is sometimes long enough for other diseases to kill the patient that arent related to ESRD. However I will say that in the patients I’ve treated with ESRD that I’ve followed over a long period of time (10+ years), the vast majority (prob 75% or so) died of ESRD-related complications despite the fact that they were receiving an appropriate regimen of dialysis.

    However, for Edwards cancer, the scenario is completely different. With her stage IV and several mets, the odds are overwhelmingly against her being with us longer than 5 years. Is it possible, sure. But extremely unlikely.

    I would never diagnose a patient as “terminal” without further explanation. But you guys gotta understand that you are not necessarily representative of the patient sample at large when diagnosed with these kinds of conditions. I’m sure most or all of you would want to have a detailed conversation about the statistics of mortality, but there’s a LOT of patients out there that want nothing to do with that–they just want my gut impression about their prognosis without spending a lot of time talking about Kaplan-Meier curves.

    With a new stage IV cancer diagnosis, I always ask them up front how much they want to know. I’d say its split about 50/50 between those who want to know every statistical detail of their prognositc profile and those who want me to “break it down” for them in one or two sentences. In the latter case, I just say that its very likely that they will pass away within the next 5 years, although I cant say with 100% certainty.

    Statistics are not destiny but to throw up your hands and say “you could be dead or alive in 5 years, we have no idea what will happen” is not good medicine. Its just as much of a disservice to say that to patients as it is to have a 2 minute talk that consists of “you are terminal, and hopelessly going to die” before walking out of the room.

  13. Ampersand,

    Yeah, there are a lot of folks like that and I can’t say I blame them. On top of everything else that a person (PWD or not) has to deal with, defending their right to be self-identifying on an online forum just might not sound all that appealing. Then there are those who have conditions that many people might consider disabling but they still don’t consider or refer to themselves as PWD. It’s silly to say that there is just one correct way of viewing diseases. I mean, what sort of ego does it take to tell someone that they are “doin’ it wrong” with regards to a disease that you’ve never even experienced? Even if some of the doctors of the world think we should consider them the authorities on anything they say they are authorities about, people with disabilities are still infinitely more familiar with what having a disease means than those who have no training studying the human body AND no experience of actually having the condition they’re opining about.

  14. I don’t know much about Edwards’ cancer, but my mother had leukemia when I was in high school. This September she’ll reach the 5 year mark. Her disease could have been terminal if the cancer spread faster than we could catch it. In fact, if she had just had chemo, chances are it would have been terminal. She had to have a bone marrow transplant.

    From my understanding, she is not “cured,” she is in remission with a high chance of the cancer not returning. So to me, her disease was potentially terminal and certainly incurable, yet neither of those terms mean she shouldn’t have received the care she needed, or the medication she still takes to regain her strength. Every year we come up with more treatments and cures for diseases or conditions we thought were “incurable,” “terminal” or both. There’s never a good reason to deny care based on someone’s percentage chance of survival. Give someone another two years, another 10 years, and there’s always a possibility that we’ll have created a new opportunity for survival.

    People are always going to be searching for a cure… that’s natural. Who wouldn’t want there to be some magical cure-all that erased all disabilities? But you’re right, we do have to start accepting that for some diseases or disabilities, there are no cures, just treatments, and that’s not a death sentence!

  15. Danakitty wrote:

    Who wouldn’t want there to be some magical cure-all that erased all disabilities?

    Well, me, for one. I belong to a multigenerational autistic family. In recent years, society has decided to categorize our particular traits as a disability. To be clear, I am not arguing that autism is or is not a disability; like anything else, it can be, depending on the circumstances. However, I find it very chilling that we live in a society where, as soon as any group gets a disability label, large numbers of their fellow citizens immediately feel that there’s some sort of moral imperative to “erase” their differences, regardless of their own views and preferences.

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