5 On Stephen Hawking, Disability, and Capability: What Are Limitations?

A few months ago, I read an article in The Telegraph about a doctor in the UK who made a statement about how people who receive disability benefits should not because if Stephen Hawking could work, then pretty much everyone could work.

The Telegraph quotes Dr. Peverley, who practices in Sunderland, England:

“We are, as a profession, dedicated to making our patients as healthy as possible, and yet a proportion of punters are hell bent on trying to prove they’re really ill, and need us to confirm it." 

“The fact is, nearly everyone is capable of some kind of work. I had considered, at one point, putting up a portrait of Professor Stephen Hawking in my consulting room with a caption that said, ‘This bloke is not on the sick’.”

Dr. Peverley is one of a number of doctors and politicians who have been engaged in a strange war on the disabled in the UK. This war began during Prime Minister David Cameron's term in office, and has been reflected in the hiring of private firm, Atos, to complete disability assessments on new patients and reassess those already disabled for the purpose of getting them off a disability pension and put them back to work.

In theory, getting people with disabilities back to work who are capable of work sounds good. One problem is, though, that Atos doesn't appear to be doing a good job of determining just who is eligible to work again and who should remain on a disability pension.

Since 2008, Atos has conducted more than 1.5 million disability assessments. However, during this time there have been more than 600,000 appeals at a cost of £60 million. A number of these appeals were based on reevaluations of disabled people who were in fact still quite disabled, but their new evaluation forms were filled with erroneous or incomplete information which did not characterize patients' degree of disability properly.

One doctor, Dr. Greg Wood, who used to work as an evaluator for Atos became a whistleblower. When interviewed by the newspaper he revealed that he had been not only encouraged - but ordered - to downplay the severity of patients' disabilities or misstate their limitations so as to get them off the disability pension rolls.

Which brings me back to Dr. Peverley. Dr. Peverley sounds like the kind of doctor who would comply with whatever Atos asked him to do in order to get patients off disability and return them to work, no matter how sick or how poorly suited to work they would be.

The Telegraph article later states, regarding Dr. Peverley:

He said that being declared “fit to work” did not mean patients had to do a laborious job.

“Being found fit for some kind of employment by Atos does not mean you’re necessarily capable of being an FBI agent or a lumberjack”, Dr Peverley said.

“However, you might be able to work at a desk on a telephone, or hold a lollipop on a zebra crossing."

On one hand, he makes a good point: Many people with disabilities and chronic illness can do something and many are not completely incapacitated. They may be disabled in some way, but they are capable of completing a task.

On the other hand, he entirely misses the point that being able to work at a regular, part time or full time job is not just about being capable of doing a task once or even here and there - it's about being able to consistently perform certain tasks repeatedly on a regular basis, typically daily, often at long stretches of time without a break. And to do so in a workplace which may only allow you a minimum of flexibility in your work hours and may or may not permit you to work from home at all.

Stephen Hawking, in a short BBC interview about his autobiographical film, Hawking (by Vertigo Films - not to be confused with the film, Hawking, starring Benedict Cumberbatch), discusses his own disability and his view of it includes acknowledgments which Dr. Peverley does not make:



Stephen Hawking acknowledges that in his situation, he was very fortunate that his disability in some ways has been an asset which allows him to avoid teaching or attending more boring committee meetings so he can spend more time doing his own research on theoretical physics. He admits that because he cannot talk to people quickly, he tends drift off on a mental tangent about some aspect of physics while around other people. He also acknowledges that with his kind of disability, it has not been a drawback to working in his field because he can do theoretical physics in his head. His physical capabilities aren't necessary to do his work.

Stephen Hawking recognizes his good fortune despite his misfortune - of this it's quite clear. And it's this message he wants everyone watching to hold on to. But he also states that some of his good fortune has been due to the support and love of his family and friends, his upbringing, the opportunity he had to get a solid education until his physical condition began to deteriorate, the care he received for many years from the National Health Service, and the fact that his condition has been a form of motor neuron disease which has given him a chance to go deep into his mind to explore new concepts while outliving doctors' expectations about his lifespan.

It might have been more traumatic for Stephen Hawking to have lost his cognitive capabilities than it was to have lost his physical capabilities because his life up until the point his condition began to worsen was already about academia, about learning and innovative thinking.

Only Stephen Hawking can really say what his choice would have been if it were given to him - I'm just guessing. But it's very clear that his complex internal mental world is where he lives, works, and plays - and if that were to be cut off from him, depression and losing the will to live might follow. This world is a big part of who he is.

Stephen Hawking is visibly physically disabled. And yet he has certain abilities others with different disabilities do not have: He can see, hear, communicate with others on and off the internet, and think clearly and rationally. He can create whole models of the Universe inside his head. He can sleep 8 hours a night, wake up refreshed, and get around with the assistance of a wheelchair and a personal assistant. While he is physically impaired, others act as his physical extensions to care for him - whether it be eating, bathing, dressing, or using the toilet. With such support, he can focus on his work.

But just because Stephen Hawking can do what he does does not mean all people with disabilities and chronic illnesses can do what he does. No one would expect someone with short term memory problems and difficulty learning and retaining new information to be able to explore problems of theoretical physics in their head any more than one would expect Stephen Hawking to start washing windows and painting the trim.

I can think of any of a number of disabilities and chronic illnesses which could impair people to the degree that a regular part time or full time job would be impossible for them. Those with severe anxiety, severe depression, bipolar disorder, or PTSD can be so overwhelmed by managing their condition that at times it is enough work just to get through the next hour - let alone day or week. Those who have cancer and have many side effects from chemotherapy and fatigue may not be able to work. Those who have frequent flareups of autoimmune diseases or have conditions which require multiple surgeries over time and recoveries and/or multiple regular tests and scans every week or two may not be able work. Those who have more than one medical condition to manage may end up spending so much time and energy in their management that it would interfere with working.

Some disabilities and illnesses get in the way of accomplishing things in a number of spheres in life more than others. Some disabilities and illnesses are more disruptive or have the potential to be more disruptive than others for holding down a regular job with regular hours and regular deadlines.

It is this last bit around which I think Dr. Peverley - and those like him - has a blind spot: The issue of employment being contingent upon consistency and reliability.

When it comes to someone being disabled or chronically ill, their capability and consistent ability to do work is different from their disability or illness. In the UK, the 2010 Equality Act defines disability as “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” This definition covers a wide range of conditions, from mental illness and learning disabilities to chronic physical illness and long term physical impairments.

Sure, someone with moderate myalgic encephalomyelitis, fibromyalgia, or chronic Lyme disease might be able to hold up up a sign as a crossing guard for a few minutes one day. But can they do it for the next fifteen minutes? Can they do it for three hours a day? Can they do it for three hours a day, five days a week, for ten months of the year? If they can't - and an employer witnesses that their crossing guard begins to fail to carry out this supposedly easy task (easy for whom?) by leaving their station early or calling in sick too many days in a row, then they will not be a crossing guard for long.

Even if this crossing guard job were a job one could do, how on earth could it provide the disabled or chronically ill individual with enough financial support to keep a roof over their head? In all reality it can't, and so even if one could work 15-20 hours a week, within one's maximum capacity for work under the best of conditions, the wages earned from being a crossing guard are small. Anyone doing such work would need additional forms of support. And even if the disabled and chronically ill individual were to be capable of this type of job, one has to consider as an employer, if your employee will be capable of doing such job for at least an intermediate length of time if not the long run - and if one is a disabled or ill employee with such job, whether doing such a job with such frequency will have a negative impact on one's health.

The same applies to Dr. Peverley's assumption about anyone with a disability or chronic illness being able to hold down a desk job. Maybe some people with disabilities or chronic illness can. Maybe some people can't. In this Telegraph article, Dr. Peverley makes it sound as if everyone can and this, again, brings up the same issues that the crossing guard job has: Someone could have trouble sitting for long periods of time due to pain and fatigue, someone could have trouble consistently performing other duties required of the job due to their individual disability or illness.

In all of these situations, Dr. Peverley overlooks two realities:

One is that the way most work is organized is that there is a daily routine and expectation where - no matter what the job is - employers want employees who will be able to show up to work on time, work at a consistent level, leave work at a certain time (often later than originally intended), work day in and out, and meet deadlines at regular intervals.

Two is that in many ways, being disabled or chronically ill can interfere with this very structure of expectations and routine around which work is organized, and because of this, employers who fear the disabled or chronically ill will not meet expectations can either discriminate against hiring those who are visibly disabled or chronically ill, and/or more easily let go of employees with disabilities and chronic illnesses if simple accommodations aren't enough to help the employees accomplish their jobs under existing terms.

The missing piece that would help empower more disabled and chronically ill people enter the workforce that is currently not part of our modern workplace culture is to adapt jobs and adapt workplace infrastructures to accommodate the person who is disabled and/or chronically ill - not the other way around.

The situation for many disabled and chronically ill people is that they may not work at their best under circumstances which are normal and typical for the average able-bodied, healthy worker. In order to empower those who can work to some degree, the best accommodation comes from acknowledging the person with disability or chronic illness' circumstances and work with them to create a suitable position and environment.

In this respect, Stephen Hawking has the kind of support that many people with disabilities and chronic illnesses do not: Throughout the film of his life, people value Hawking's opinion and ideas and bend over backward to accommodate him, with graduate students often also serving as personal assistants early in Hawking's career. As time goes on, hired nurses and assistants take their place. Personal care, assistive technology, and Hawking's research position are all created specifically to support him in doing his work as much as it is possible - rather than having Hawking be given only a few accommodations which might make the simple act of living possible.

People with disabilities and chronic illnesses who could work and contribute something to society are better able to contribute if society as a whole begins to integrate a concept of working with disabilities and chronic illness into existing economies and workplaces. Workplaces and technology can evolve to create jobs which empower those with disabilities and chronic illnesses to work as much as it is possible.

Rather than have the standard job with typical requirements and routines, jobs would have to be created which disabled and chronically ill people can do which do not rely on consistency or on meeting deadlines at regular - often short - intervals.

Jobs and workplace infrastructures would have to be created which can flex around the circumstances of a person's reality, strengths, and weaknesses - rather than to try to shoehorn the disabled or chronically ill person into a job and workplace which permits a few small changes that help accommodate the person to try to work at the job in the same way able-bodied and healthy people do.

The support should be there to accommodate people in reaching goals whether or not they conform to standard workplace expectations. And not to do so in order to make the Dr. Peverleys of the world shut up and feel righteous about their idea that those with disabilities and chronic illnesses should be able to get off disability pensions and work - but to empower anyone to pursue goals, to follow dreams, to have some hand in supporting themselves and having a sense of a future despite the cards they've been dealt.

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0 Mitt Romney, Lyme Disease, And The Media

Well, I guess I had to come out of the woodwork to comment on this recent turn of events... If life wasn't so hectic lately, I could have blogged sooner, and written about David Suzuki's observations on how changes in the environment have led to increased incidence of Lyme disease, or Senator Blumenthal's request for personal stories of patients who have been affected by Lyme disease, or the discovery of a new, serious  tickborne phlebovirus in Missouri.

But no, that didn't happen...

The first opportunity I really have to sit down and write here, the news that is crossing my desk and getting a lot of airtime is about Presidential candidate Mitt Romney and the media's commentary on how his support for greater awareness of chronic Lyme disease has been used to ignite interest in Virginia voters who have been struggling with the disease.

And the media has not stopped there, with its opinion pieces focused on how any candidate for office can and will try to influence the vote of certain subgroups of people affected by issue x or issue y... No, after initial criticism was volleyed at Romney, a number of journalists posted articles on chronic Lyme disease and how it is not a real medical condition.

Well, here we go again. It is the same story told by some newspapers and writers, over and over again, about how chronic Lyme disease doesn't exist and how doctors who treat it are taking unfair advantage of patients who are suffering and how patients are naive dupes for a disease based on pseudoscience.

I honestly think at this point that many of you who are writing these pieces for publication have a template for about five boilerplate articles on chronic Lyme disease that you have slight variations on, and publish each article just far apart from each other that the busy, overworked, and exhausted public won't notice that you essentially wrote the same damn thing again - but perhaps with a little twist.

When I first began this blog, it was because of an article written in the Chicago Tribune which was supposed to be about how chronic Lyme disease is a dubious diagnosis - when the content of the article itself had no relationship to the title, and did not examine the issue of whether or not Borrelia burgdorferi - the bacteria which causes Lyme disease - could potentially cause a persistent infection in some people.

What the article in the Chicago Tribune did was look at two doctors who were said to have treated chronic Lyme disease who were reported for disciplinary action to their medical boards for various reasons unrelated to Lyme disease and one charlatan who - like many who promise to offer a cure for cancer - has no cure and no credentials whatsoever.

What a brave and insightful piece of literature it was, to move beyond the carefully crafted soundbites of a puffed-up opinion piece, by closely examining all the issues behind why some doctors, researchers, and patients may think that Lyme disease could persist - and why and why that isn't supported by existing evidence.

Not.

The article did not in any way, shape, or form discuss the scientific complexity involved in Borrelia infections, and the difficulty that doctors can have in properly diagnosing it as its symptoms mimic other conditions. It did not look at the state of the science on Borrelia burgdorferi sensu latu, and how a broad range of strains have different effects and disseminate at different rates.

Anyone reading it would have walked away not with the message that Lyme disease and other tickborne infections can produce a complex symptom presentation. Anyone reading it would not have learned how to prevent such illnesses or to even learn if there are differential diagnoses which one should look at which may be confused with chronic Lyme disease. It wasn't a helpful article that way. What they would have walked away with is the message that there are some doctors out there who have been disciplined for various reasons who happen to treat people with persisting symptoms related to Lyme disease, and some misinformation online about what Lyme disease is and is not.

The recent spate of articles which spend time criticizing Mitt Romney's move to spread awareness of Lyme disease as part of his future goals if elected have also had pretty much the same kind of content, and as opinion pieces are intended to persuade the audience and win them over to the writer's view. However, it should be noted that in no way should these opinion pieces be taken as the final word or even current word in science on what Lyme disease is all about - because as opinion pieces, they are neglecting mention of the scientific evidence needed to support their assertions.

The New Yorker's  recent article, "Mitt Romney Versus Lyme Disease And Science", states that:

"...If left untreated, Lyme disease can be crippling, yet it is a difficult illness to contract: a tick needs to attach itself to your body for at least twenty-four hours. Even then, two weeks worth of commonly prescribed antibiotics will kill the bacterium."

Yes, indeed, if left untreated Lyme disease can be crippling. This much is true: late stage, untreated Lyme disease can lead to cardiac, neurological, and arthritic complications. However, there is more to the rest of the story when it comes to the remainder of this passage: If a tick is on your body for fewer than twenty-four hours, there are circumstances under which transmission of Lyme disease (as well as other tickborne infections) may occur - including if the tick is improperly removed. Also, even the most conservative reading of the IDSA's 2006 guidelines for the treatment of Lyme disease would state that given certain objective and clinical signs, some patients may need retreatment or more than two weeks' worth of antibiotics - particularly if there are certain cardiac, neurological, and arthritic symptoms present.

The New Yorker article simplifies the nature of Lyme disease and makes sweeping statements here. What it could have said - and still be true to mainstream infectious disease canon - could have been this:

"...If left untreated, Lyme disease can be crippling. In American scientific research to date, it has been shown that in most cases, an Ixodes scapularis or pacificus tick needs to attach itself to your body for at least twenty-four hours before Lyme disease can be contracted. Improper tick removal and other factors may, however, contribute to earlier contraction of disease. One might note that there is some evidence that in Europe, Ixodes ricinus ticks have a shorter transmission time for passing on Lyme disease bacteria than American ticks. But even then, in acute cases, the immediate treatment of two weeks' worth of commonly prescribed antibiotics will kill the bacterium in most cases. If symptoms continue, further evaluation for more severe infection and tickborne coinfections is needed."

I think some more qualifiers are needed there. And I know - this is, perhaps, a less targeted passage in that it steps outside of American research and points at what's happening in Europe. But the point is, Lyme disease is a global issue and a global problem, due to global warming and climate change. It's not just Virginia's. Or even the eastern seaboard's problem.

People travel. People get sick overseas. Lyme disease is overseas. And perhaps it helps to raise the question of how much scientific research on Borrelia may be applicable in different locations the more that is learned about the bacteria as a whole... More research here is really the key to better understanding this bug.

I will, however, give The New Yorker's Michael Specter credit for this mention:

"In fact, there is a clear scientific issue that can only make Lyme disease worse—but it is a problem that Romney and the Republicans have ignored. The Intergovernmental Panel on Climate Change has noted that increasing temperature helps keep ticks alive. More ticks means more Lyme disease. This is a connection, as Mother Jones first noted, that Romney has failed to consider. Instead, he has said that spending huge sums trying to reduce CO2 emissions is “not the right course for us."

Climate change is a huge player in the tickborne illness game, and I don't need Al Gore or the IPCC or even David Suzuki to point this out for me. Look outside every year, and tell me what I don't see with my own eyes: The ticks are out there earlier, and out there for longer periods of time than they've been in the past. Ask the epidemiologists and entomologists, too, if you need confirmation... Sure populations will wax and wane to a degree - but what's the trend over time?

The Business Insider's article, "Why Romney's Statements About Chronic Lyme Disease Are Dangerous", does tend to give the topic a somewhat more balanced approach by acknowledging that there is a debate within the medical and scientific community by stating, "Many doctors and researchers don't believe in this syndrome, which lasts much longer than your run-of-the-mill Lyme disease infection. The CDC, NIAID, and leading medical professionals agree that the syndrome doesn't exist. There are others within the scientific community, and especially outside of it, that debate these experts."

This, at least, is an opening gambit which sets the tone for the rest of the article by acknowledging there is a debate - with the primary focus being that politicians such as Mitt Romney should steer clear of medical debates and leave such debates to science, where they belong. Politicians are not qualified to participate in such debates.

One notable passage for me was this one:

"The symptoms of chronic Lyme disease could also be caused by an auto-immune reaction to the infection, or lasting damage from the bacterial invasion. Either way, these symptoms aren't helped by additional long-term antibiotic treatment, which has side effects and dangers of its own."

This is perhaps the first and only statement in the entire article which focuses on what some potential causes are of chronic Lyme disease, giving it some acknowledgement that yes, in fact, this condition does exist - even if its cause has been greatly debated. But there are no citations and there is no supporting evidence given to back this passage - nor a good percentage of other statements made in the article. There is no mention, either, of Dr. Monica Embers' "Persistence of Borrelia burgdorferi in Rhesus Macaques" study or other research which present the possibility that Borrelia burgdorferi might persist after antibiotic treatment.

In Slate magazine, Laura Helmuth reports this personal story:

"A friend of one of my brothers had been suffering for years from headaches, fatigue, a sense of despair, a belief that she wasn’t worthy of her job or her boyfriend. She was diagnosed with chronic Lyme disease and was treated with antibiotics, which were ineffective. What she wasn’t treated for, and could have been, was severe depression. She killed herself."

While I am very saddened to hear of this woman's death, there isn't enough information here to know exactly what happened. She may have had severe depression, she may have had Lyme disease, and/or she may have had a completely different medical issue. I simply don't know - there's no way to verify this story - it is also possible the woman in question had both Lyme disease and depression, because it happens to a number of people. It happened to me, too... I was in so much pain in the past, I was begging for God to take me.

If you are depressed, I hope you will seek treatment for it, and see a qualified licensed therapist for help. But it has been said by many in the medical profession to seek alternative causes for depression and fatigue, as hypothyroidism and other conditions may give rise to these symptoms. There can be underlying medical reasons for one's depression, and it may be that antidepressants are not the primary tool for healing.

In any piece of writing, it is important to consider the following questions:

• What is the expertise and education of the person writing?
• What is the agenda of the writer? Are they trying to promote an idea, sell a product, evoke a strong emotional response to gain readership, present different sides of a contested issue, or educate the public on an important matter?
• What is the outcome that can be achieved by publishing this specific piece in this particular publication?
• What references and citations has the writer given to support their assertions and statements?
• Does a thorough survey of the information provided and research completed from different sources provide evidence which support the writer's position? 
• Is there information and research which supports an alternative position? What is the strength of the evidence supporting these positions?

I encourage anyone reading these articles about Mitt Romney and chronic Lyme disease to ask themselves the same questions above, and to do your own research on whether or not Lyme disease can lead to persisting symptoms after initial (especially delayed) treatment with antibiotics.

The entire Internet is out there at your disposal to use, and scientific journals, books, PubMed, and other reliable sources from which to get your information on Lyme disease - all free of spin.

Of course, you yourself will end up walking away from all the research required to even begin to understand Borrelia burgdorferi with your own personal spin - but at least you will know more than you can learn from reading a random article which gets published in an online newspaper or magazine.

And write to researchers if you want to better understand their research. It's the honest way to understand what their position is on their own work, rather than assume their position based on others' interpretations of their work. They will likely be touched that you made the effort to ask questions than assume someone else's interpretation (which may or may not be correct), and be pleased that you took the attitude that no question is a stupid question.

As for your vote: vote with your conscience. I can't tell anyone how to vote and it's not my job to tell you how to vote. I can only tell you that after seeing George W. Bush in office and how little attention and assistance he gave the Lyme disease patient community after his own battle with the disease that I have little faith in any politician delivering the much needed funds for translational medicine and treatment research that will help me and my fellow patients.

I feel pretty much the same about anyone else running for office, and anyone trying to stay in office: Show me you can make my life better, either directly or indirectly through concrete and substantial action - or hire someone working for you who will.

I don't want someone to discuss synergy (some vague assertion with no concrete plan), creating another task force or Lyme disease committee, or official state day in observance of Lyme disease. No. What I want to see is money going directly towards treatment and testing research - towards something tangible that has clear actionable goals and benchmarks to be met. What I want to see is concerted effort towards directly supporting those who are ill, with access to a wider range of treatment options, home health care aides, transportation, and supportive services (therapy to help patients physically and emotionally) during the darkest times of our lives.

I also am not a "single issue voter", either. If you are running for office and you make campaign promises that are about promoting awareness of Lyme disease - but slash support for medicare and disability, and make it harder for those of us who are ill and dysfunctional to get the help we need on a broad scale - I can't in my good conscience vote for you. I have to vote for someone who supports all of us who are dealing with disabilities - my fellow humans who are suffering - and those who are currently well who, unfortunately, may one day join our ranks.

In closing, I leave you with one passage from The Business Insider:

"Romney should pledge to funnel money into research organizations that could find the actual cause of this disease, and he could help stop its spread by addressing the causes of global climate change, the main reason the disease has reached so far and wide and continues to spread."

I wouldn't stop there. EVERYONE should pledge to funnel money into research organizations that could find the actual cause of this disease - and more importantly, effective treatment and testing for it.


Image Credit: Former Governor Mitt Romney giving an interview at a supporters rally in Paradise Valley, Arizona. December 6, 2011. Source: http://www.flickr.com/photos/gageskidmore/6468744615/. Taken by Gage Skidmore. This image is licensed under the Creative Commons Attribution-Share Alike 2.0 Generic license.

This work by Camp Other is licensed under a Creative Commons
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