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Disability and the
disabled mindset:
The human costs
and the opportunity
First in a series
August 2014
26.03.197.1 (8/14)
It’s time to redefine “disability”
To define “disabled” as “unable to
work” seems fairly straightforward.
But is it?
2
Disability insurance policies are offered, administered or underwritten by Aetna Life Insurance Company (Aetna).
Posted in late 2010, a video of two ballet
dancers went viral on YouTube. He has
a leg amputation and she has an arm
amputation.1 By any stretch, they would
be classified as disabled. And yet, the
beauty of their performance moved the
audience to tears and reached more than
half a million Internet viewers. The piece
is especially thought provoking in light of
the swelling ranks of people who receive
disability benefits, particularly in the
United States.
It’s time to examine this trend, look at the
human costs of the disability epidemic
and explore opportunities to redefine the
term “disability.” Let’s reverse the trends
and give those who have disabilities and
limitations opportunities to achieve their
full potential. Such an investment can make
a positive impact.
What are the human
costs of disability?
Being on disability can be straining physically, financially and
psychologically. The “disabled” label often comes with:
•Decreased life expectancy
•Marginal income levels
•Poorer general health
•Learned helplessness
In 2013, the average Social Security Disability Insurance
(SSDI) benefit was $1,132 per month, or $13,584 per year.
This is the equivalent of working full time for $6.53 per hour.
Even for those who can supplement this with private disability
benefits, the income usually falls below the poverty line. At
those levels, life expectancy may be shorter. According to a
Social Security Administration working paper, at age 65,
people in the upper half of the income distribution may be
expected to outlive their counterparts in the lower half by
5.5 years.2 Those shorter lives generally reflect poorer overall
health. Most likely, the diagnoses that qualify claimants for
disability benefits increase this difference.
Depression is also more common at lower income levels.
Add a disability label, and psychological problems increase.
Being diagnosed with a chronic condition is itself stressful.
Stressors include:
•Adjusting to physical limitations
•Coping with the financial consequences of disability
•Coping with others’ changed perceptions of the individual
with the disability
•Interacting with the medical system on an ongoing basis
YouTube. She without arm, he without leg – ballet – Hand in Hand – higher. December 28, 2010. Available at: www.youtube.com/
watch?v=UTrb6i7gJAk&hd=1. Accessed August 1, 2014.
2
Waldron, Hilary. Trends in Mortality Differentials and Life Expectancy for Male Social Security-Covered Workers, by Average Relative
Earnings. October 2007. ORES Working Paper No. 108. Available at: www.ssa.gov/policy/docs/workingpapers/wp108.html. Accessed
August 1, 2014.
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Bottom line: Having a disability is stressful
People need meaning and purpose
Individuals diagnosed with a physical disability often
experience depression and anxiety. In a study of 1,595
patients with chronic musculoskeletal pain disability, 3
64 percent had a psychological diagnosis. This is significant
when compared to the 15 percent that is expected in a
comparable general population.
In a recent article in The European Journal of Counseling
Psychology,4 two researchers from the University of Thessaly
in Greece suggest that depression occurs because the
changes and stresses associated with the physical disability
rob the individual of the meaning in his or her life. They
sampled people with different physical disabilities. They
found that the more depressed individuals were the ones
who poorly adapted to having the disability.
With pain disorder included in the analysis, the rate of
psychological conditions jumped to 99 percent. 3 The most
prominent conditions included:
•Depression
•Anxiety
•Substance abuse
The authors determined that stress linked with a chronic pain
condition is a key factor in understanding the high rates of
psychological problems.
Prevalence of
pre- and post-injury
DSM* Axis I mental
disorders in study
patients3
There is a negative impact on an individual’s measure of
the meaning and purpose in life when he or she experiences
depression and poor adjustment. Having meaning and
purpose can offset the harmful effects of disability. For many
people in the United States, life’s meaning is closely related,
if not completely connected, with work. Ironically, the system
that helps people with disabilities, also takes them away from
the very thing that gives their lives meaning and purpose. This
all happens while people are trying to adjust to life with their
disability and are faced with depression.
Pre-injury
Post-injury
Any disorder
37.7%
99.1%
Any disorder, excluding
pain disorder
37.6%
56.2%
Major depression
10.2%
48.5%
Opioid dependence
1.6%
13.8%
Any somatoform disorder
(e.g. pain disorder)
1.6%
96.4%
*DSM = Diagnostic and Statistical Manual of Mental Disorders.
3
Dersh, J. et al. Prevalence of psychiatric disorders in patients with chronic work-related musculoskeletal pain disability. Journal of
Occupational and Environmental Medicine. May 2002; 44 (5) 459-468.
4
Psarra, E., Kleftaras, G. Adaptation to physical disabilities: The role of meaning in life and depression. European Journal of Counseling
Psychology. 2013; 2 (1).
4
Does having a disability
have to imply disabled?
Both the American Psychiatric Association and the American
Psychological Association have long recognized the danger
of equating people with their diagnoses. Practioners are
encouraged to describe patients as “individuals with … ” rather
than using the diagnosis to describe the patient. So we talk
about people with schizophrenia. We don’t say they are
“schizophrenic.” The former language suggests that an
individual with schizophrenia has many characteristics. The
diagnosis is only one of them. The latter term implies that
schizophrenia is the individual’s identity, rather than only
one of his or her characteristics.
This distinction is not simply academic. Almost a hundred
years ago Gestalt psychologists articulated the concept of
“closure.” This is when our brains seek to recognize wholes
from parts. Once we have seen the big picture, it becomes
much more difficult to see the details. To describe an
individual as schizophrenic or disabled is to assume that
person has all the characteristics of that label. To describe
oneself as schizophrenic or disabled is to accept for oneself
the limitations that come with the label.
We see the world through biased lenses. It is difficult to
transcend personal biases, as noted in Nobel laureate Daniel
Kahneman’s recent best seller, Thinking, Fast and Slow. 5 Our
biases impact nearly everything we do and think. For example,
they are evident in how we interpret referees’ penalty calls,
depending on which team we support, and which news
networks we believe and watch depending on our political
leanings.
How we see ourselves determines what we feel is reachable.
It is a variant of the self-fulfilling prophecy in which lower
expectations — internal or external — lead to lower
performance. Our self-concept is steeped in assumptions.
Gender and race have a biological basis and are assumed
early in life. We acquire many others later in life, such as work
and life roles, political and team affiliations. The “disabled”
label is typically, but not always, acquired later.
Individuals who label and perceive themselves as disabled
generally see a different world than “able” individuals.6
A study with almost 10,000 participants found that the
“permanent work disability” label alone is sufficient to
alter perceptions of health, trumping both diagnoses and
duration.7 This is a result of the acquired perceptual
phenomenon known as learned helplessness. This often
accompanies the “disability” label. Over the last 35 years,
both animal and human studies have found that when
organisms feel they have no control over a situation, they
often give up trying. When we label individuals as disabled,
implying that they “cannot do ... ,” they may begin to feel
helpless and stop trying. In a very real sense, labeling
someone as disabled is to condemn him or her to become
a “disabled/cannot do” individual.8
The good news is that the human mind is flexible and open
to change. The flip side of learned helplessness is helping
people develop optimism and a sense of control over the
manageable aspects of life, despite the diagnosis.
Through the 1980s and 1990s, literature focused on
demonstrating that some version of learned helplessness
was common among people with various disabilities. More
recently, the emphasis has been on ways to fight learned
helplessness. We focus on empowering people who have
disabilities. In fact, the researcher who initially introduced
the concept of learned helplessness, Dr. Martin Seligman,
has now refocused his work on “positive psychology.” This
includes the importance of having:
•Positive emotions
•Good relationships
•A sense of accomplishment
•Engagement in what one is doing
He argues that all of these things are required in order to
flourish in life.8
Kahneman, Daniel. Thinking, Fast and Slow. New York: Farrar, Strauss, & Giroux, 2011.
King, G.A., et al. Self-Evaluation and Self-Concept of Adolescents With Physical Disabilities. Am. J. Occupational Therapy [article
online]. 1993; 47: 132-140. Available at: http://ajot.aotapress.net/content/47/2/132. Accessed June 10, 2014.
7
Fýlkesnes, K, & Førde, O.H. Determinants and Dimensions Involved in Self-Evaluation of Health. Social Science and Medicine [article
online]. 1992; 35: 271-279. Available at: www.sciencedirect.com/science/article/pii/027795369290023J. Accessed June 10, 2014.
8
Seligman, M.E.P. Flourish: A Visionary New Understanding of Happiness and Well-being. New York: Free Press. 2011.
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What is the road from
disabled to able?
Education
Seligman’s work reinforces the importance of meaning and
purpose. Some people have the natural ability to achieve
meaning or purpose on their own, even in the face of the
most horrible events. However, most people require some
transitional steps. What might those be? How do we stop
issuing so many “disabled” certificates to people with
abilities? How can we instead move toward the mindset
of Paralympic athletes and the two amputee ballet dancers
cited previously?
Language
For starters, perhaps we should stop using the terms disabled
and disability. Given the active discussions on the Internet
about language that puts people before their disabilities,
many individuals currently described as “with disabilities”
might not object to the disappearance of this and many other
terms considered disrespectful.9 Of course, banning words
can only be a starting point.
Percent of injured
workers who return
to work and percent
of those who return
to full duty11
Part of what creates learned helplessness in many people is a
lack of genuine understanding of the effects of the diagnosis.
When doctors do not have time to talk to patients about their
medical conditions, patients turn elsewhere for information
and comfort.10 These days, people often search online.
Unfortunately, the Internet is a double-edged sword.
Though a powerful tool for sharing information, the
downsides are that:
•Anyone can contribute to the conversation without
educational or other qualifying requirements
•There is a bias toward filtered information
•There is widespread misinformation and even
disinformation
•The volume of Internet-available information itself might
be overwhelming and contribute to learned helplessness
Much evidence indicates that the better patients understand
their medical conditions, the more likely they are to cooperate
with treatment, to adapt and to be meaningfully engaged.11
100%
n Return to work
n Return to full duty
94%
80%
74%
65%
60%
68%
40%
33%
20%
18%
Poor
Fair
Good
Understanding of medical condition and return to work. Patients with good understanding of their medical conditions were far more
likely to return to work than those with a poor understanding (94% vs. 33%), and to return to work full duty at the pre-disability job
(68% vs. 18%). Patients whose understanding was intermediate fell in between in terms of return to work statistics. The groups were
equated for the severity and prognosis for their medical conditions (mostly degenerative disc disease); measures of psychopathology
did not differentiate.
Mobility International tipsheet. Available at: www.miusa.org/ncde/tools/respect. Accessed June 6, 2014.
Shorter, Edward. From paralysis to fatigue: A history of psychosomatic illness in the modern era. New York: Free Press. 1992.
11
J.M. Lacroix et al. Low-back pain. Factors of value in predicting outcome. Spine. June 1990; 15 (6): 495-499.
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Furthermore, data consistently shows that when patients are
given the right information — patiently and from a credible
source so they can process the information and get answers
to their questions — incorrect beliefs and the associated
dysfunctional behaviors can change.
This is where the Internet can be used to help spread good
information. In reality, doctors are not always available to
spend quality time with their patients. Over the last several
years, health insurers have developed web-based libraries of
information about:
•Medical conditions
•Treatment options
•Useful recommendations
The insurers have provided these sites to their members,
typically at no cost. They’ve done so based on the assumption
that better-informed patients are likely to manage their
medical conditions more appropriately. Some of these
programs can be personalized to subsets of patients with a
particular disease or condition. Since many health insurers
are also in the disability insurance business, it would make
sense to bridge the gap between the two. Let’s make these
information programs available to disability claimants as well.
Aetna has begun to do this.
Empowerment
Self-efficacy refers to the strength of a person’s belief that
he or she is able to affect situations and effect change.
Knowledge is a good starting point, but it is not sufficient in
itself to overcome the type of learned helplessness that often
comes with the “disabled” label. The individual must also
believe that he or she can act on that information. In order
to improve, one must have faith that efforts to do so will be
successful. Otherwise, why bother?
Self-efficacy has been found to have value in the health field
in predicting who is likely to change to healthier behaviors.
However, it is important to realize that an individual’s level
of self-efficacy is not necessarily static. The experience of
success can breed the expectation of more successes. How
can we foster the experience of success in people whose
predominant experience has been failure?
It’s doable. Part of the solution is to focus on small,
achievable steps. Sometimes, just having the person make
a list of strengths and accomplishments is a good start.
Acknowledging and refocusing attention on one’s positive
attributes can help shift the biased perceptual lens from
anticipating negative outcomes to having more positive
expectations.
Drawing upon the examples of others who have made a
similar journey from “disabled” to “able” and who have
successfully brought more meaning and purpose into their
lives can also be useful. Self-efficacy can be enhanced and
ultimately lead to healthier, more fulfilling and meaningful
lifestyles. This process requires commitment both from those
wanting to move out of a “disabled” lifestyle and mentality,
as well as those wishing to help them. Success will also
require a degree of creativity, as each person is different and
responds more favorably to a different type of intervention.12
What are the next steps?
Evidence suggests that many people who receive disability
benefits are relegated to the ranks of “the disabled” following
their diagnoses. This often happens because they don’t have
the educational or work skills necessary to participate in
today’s very competitive economy.13 That is true for both
people who receive Social Security and private long-term
disability benefits.
It’s helpful to talk about banishing words and having people
redevelop meaning and purpose in their lives. It’s also truly
inspiring that some people are able to do just that on their
own. But to have an impact on significant numbers of people
who are affected, we all must be willing to lend a hand. This
means that those insurers and politicians who want to move
folks from the “disabled” to the “able” side of records must be
willing to commit to providing job assistance. Employers must
also be willing to:
•Re-hire employees
•Modify jobs
•Invest in retraining their human capital
As a society we must be willing to look beyond the labels
attached to less fortunate individuals, revisit their strengths
and previous accomplishments and help them put their
abilities to good use once again.
Marks, R, Allegrante, J.P. A Review and Synthesis of Research Evidence for Self-Efficacy-Enhancing Interventions for Reducing
Chronic Disability: Implications for Health Education Practice (Part II) [article online]. Health Promotion Practice. 2005; 6: 148-156.
Available at: www.hu.liu.se/lakarprogr/t8/pdf-dokument/1.66209/MarksetalAReviewandsynthesis.pdf. Accessed June 10, 2014.
13
Joffe-Walt, Chana. Unfit for Work: The startling rise of disability in America. National Public Radio. 2013. Available at: http://apps.
npr.org/unfit-for-work. Accessed May 20, 2014.
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Want more information?
Find out how you can tailor your disability
and absence management programs
to meet your employees’ unique needs.
Just call your representative or visit
www.whyaetnadisability.com.
This material is for information only and is not an offer or invitation to contract. An application must be completed to obtain coverage.
Rates and benefits vary by location. Disability insurance plans contain exclusions and limitations. Information is believed to be
accurate as of the production date; however, it is subject to change. Policies are not available in all states. Policies contain certain
exclusions, limitations, reductions and waiting periods, which may affect the payable benefit. See policy or contact an Aetna
representative for details. For more information about Aetna plans, refer to www.aetna.com.
Policy form numbers issued in Oklahoma include: GR-9/GR-9N and/or GR-29/GR-29N.
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