Sunday, November 17, 2013

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.


5 comments:

  1. "...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..."

    This rings very true for me. Without a "special" job, I would be effectively unemployable on that basis. I am only able to work short hours, and at times when I am most alert (early to late morning - afternoons don't happen.) I also can't guarantee that I will be able to work any particular day; I just know that, on average, I can get in just over sixteen hours work in a week.

    For me, thankfully, the point is moot. I am self-employed, and work from home. I make it very clear to clients that I can never guarantee to be able to work in "real time," but it's very rare that I'm not able to get things done in a timely fashion - just not in a "normal" timeframe. What I am NOT able to do is to commit the resources to seeking future work so, in addition to very restrictive hours, all is not that rosy. There is simply no security there.

    Peverley is demonstrating a lack of understanding, compassion, and indeed common sense - but it's not the first time I have encountered this from the medical community. As part of my journey, I have always stressed that my highest priority is being able to work - and have had on more than one occasion received a response along the line of "tough," rather than "let's see what we can do to achieve this." OK, these are practitioners on the other side of the card who see putting someone on disability as an easy way out (for themselves.) However, the common factors appear to be the lack of understanding, compassion, and common sense I mentioned previously.

    ReplyDelete
  2. Hi Smiffy - welcome to Camp Other blog!

    "This rings very true for me. Without a "special" job, I would be effectively unemployable on that basis. I am only able to work short hours, and at times when I am most alert (early to late morning - afternoons don't happen.) I also can't guarantee that I will be able to work any particular day; I just know that, on average, I can get in just over sixteen hours work in a week."

    This is a very important point in creating a job or position for someone with a disability or chronic illness: You know your limits and when and how you are best able to work. A model of employment could be adopted which creates a job for someone in your position, and even integrates with coworkers in a similar situation.

    For example, someone else else may have to take medication which affects them in the morning and they are productive and less likely to have their illness be disruptive in the afternoon. An employer who wants to hire people with these circumstances could create job sharing positions where the one employee similar to you could take on the morning shift while the other works in the afternoon.

    It won't look like a traditional job - but it doesn't have to.


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  3. (For Smiffy - continued)

    "For me, thankfully, the point is moot. I am self-employed, and work from home. I make it very clear to clients that I can never guarantee to be able to work in "real time," but it's very rare that I'm not able to get things done in a timely fashion - just not in a "normal" timeframe. What I am NOT able to do is to commit the resources to seeking future work so, in addition to very restrictive hours, all is not that rosy. There is simply no security there."

    Nods. Self employment is one way to continue working with a disability and/or chronic illness that works for a number of people - and I think it's great that you can continue working as long as you're up for it. That you've found clients who are okay with your terms is excellent. But as you've said, it's very rare you're not able to get things done in a timely fashion - so from the clients' perspective, all they see is that you're getting the work done and meeting deadlines.

    The lack of security is more difficult. And because individual people's situations are different, I'm not sure what can be done to improve this situation. You can only do so much in so much time. If disability strikes when one is fairly young, that's double jeopardy because then there's been little opportunity to put money aside in general savings or towards retirement.

    In situations like this, one would hope to have either saved money for the rainy days which have now come (not always possible, as other things can come up which require immediate payment) or that there is another form of support available through taxes from the state and special programs.

    How this is best done is something that isn't clear to me - all I know is that for many people in different countries, their current arrangement is suboptimal to worse.

    In the US, to qualify for federal disability support, you are either permanently disabled and will be for a minimum of a year to for the rest of your life, around 70-80% of all applicants are rejected the first time they apply, and when on it you aren't expected to work but after about a year on it, will be given tips and encouragement on how to return to the workforce if you can.

    In this arrangement, there is no middle ground. One can't be partially disabled and receive partial benefits from the beginning - something I'd like to see change, so that those who can work a little can and still receive some form of support if they will not be capable of working full time.

    Some US states have disability programs which work like this - and generally the recipient is eligible for up to one year of partial support. But once that year is over, the person with the disability or illness has to apply for federal disability, where one may eventually work and still draw benefits but cannot earn more than a very small monthly amount before all support is withdrawn.

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  4. (For Smiffy - continued)

    "Peverley is demonstrating a lack of understanding, compassion, and indeed common sense - but it's not the first time I have encountered this from the medical community."

    Brings up the adage of how common sense doesn't seem to be as common as one would like?

    I keep thinking it shouldn't be too hard to imagine what it might be like to be in another person's shoes and have empathy towards them. But so many times I've been proven wrong on this count.

    "As part of my journey, I have always stressed that my highest priority is being able to work - and have had on more than one occasion received a response along the line of "tough," rather than "let's see what we can do to achieve this." OK, these are practitioners on the other side of the card who see putting someone on disability as an easy way out (for themselves.) However, the common factors appear to be the lack of understanding, compassion, and common sense I mentioned previously."

    "Let's see what we can do to achieve this" to me seems to be the most sensible way to work with ANY employer-employee relationship, under a number of circumstances:

    - My mother has cancer and will need to go to many doctors' appointments and chemo sessions. How can I do my job and still meet her needs? Can you work with me to design a flexible schedule and the ability to do some work remotely?

    - I'm going to need surgery and will have a few months of recovery time, however I'd like to be able to work as much as possible while I'm recuperating. How can I do my job 100% from home during this time?

    - My wife and I have discussed this and we decided it would be best in our situation that I spend part of the day with our newborn while she works. What can be done to change my schedule so I can spend more time with my son?

    Just three examples, and they aren't about permanent disability or long term chronic illness. Being able to use common sense to accommodate circumstances that can and do crop up - such as these - can set the stage for coming up with solutions that work for people with disabilities and chronic illness.

    But a few elements need to be present for these accommodations and changes to take place: Employers have to have loyalty for their employees and desire retaining them above finding reasons to replace them with someone else who will not want or need accommodations. Employees will have to consistently live up to expectations under their newly accommodated state/agreement. Whatever arrangement is arrived at will have to somehow be financially feasible to maintain for both parties, however it is done.

    I don't have the answers here. It's something I've been thinking about a lot lately, about the issues of productivity and value; the value of an employee and how that relates to one's value as a human being. Kindness. Accepting one's reality and responding to it in a pragmatic yet positive way.

    CO

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