Ria Mukherji
You would be forgiven for thinking that in the US people with disabilities have full inclusion and equal participation in society. After all, the Americans with Disabilities Act (ADA) protect individuals with disabilities from discrimination. It requires that workplaces and educational institutions provide reasonable accommodations for people with disabilities to work and study effectively. Specifically, the ADA defines disability as “any physical or mental condition that substantially limits a major life activity” (ADA, 1990). Although people with chronic illness –that is constant or occurring repeatedly over a long period of time - are included in this definition, popular imagination tends to think of disability as mobility, sensory, and learning impairments. Not only is chronic illness the leading cause of disability in the US but also people are increasingly being hit with chronic illness earlier in life than in the past (Weil et al., 2019). Yet, as there is little understanding in workplaces and educational institutions about the nature of chronic illness and the barriers it creates, access to education and employment for the chronically ill remains far from equal.
Firstly, the similarities between chronic illness and impairment are not well understood. Impairment is what is absent or different in a person’s body structure or function. Mobility and sensory disabilities, for example, have localized impairments in the limbs and senses. The impairments associated with chronic illness tend to be systemic, affecting the whole person. Of the hundreds of chronic illnesses, the most common impairments relate to chronic pain and fatigue, resulting in decreased stamina for everyday activities like walking, standing, concentrating, and learning. People with chronic illness often need to plan their energy expenditure so that they can carry out their daily self-care and household tasks, as well as their work or other goal oriented activity. So while loss of limb or eyesight is clearly impairment, understanding the impairments caused by chronic illness is complex and subtle.
Secondly, chronic illness is commonly seen as ‘sickness’ rather than ‘disability’. As most people have been sick at some point or another, experiencing significantly milder symptoms to the chronically ill (i.e. tiredness, pain, dizziness), the experiences of those with chronic illness can be trivialized. All too often, people with chronic illnesses like Multiple Sclerosis, Arthritis or Endometriosis are seen as exaggerating common problems, and perceived as lazy, ineffective, and an unnecessary burden. A simple example is that most people don’t know the difference between the overwhelming weakness and inability to function caused by medically-defined fatigue and normal, even extreme, tiredness. In truth, the experience of the chronically ill cannot be fully understood or imagined by healthy people. That is why it is time to educate our institutions and ourselves.
Thirdly, most chronic illnesses are invisible, which can lead to misunderstandings. We usually can’t tell from someone’s appearance that they suffer from chronic pain, fatigue, or mental health conditions that may limit their life activities. As a result, people with invisible chronic illnesses are often accused of faking their impairments and continually face trying to prove that their impairments are real. Further, our institutions must acknowledge that for women and people of color with invisible disabilities, accessing accommodation can pose additional hurdles. To illustrate this, a 2016 study on the workplace supports people with invisible disabilities want versus what they get found that women have “satisfaction gaps” that are three-fold larger than men (Working Mothers Research Institute, 2016).
Lastly, chronic illness symptoms are multi-causal, unpredictable and unstable. While mobility, sensory and learning impairments tend to be stable, chronic illness fluctuates in severity on a day-to-day basis. There are days when an individual can function normally, days when they cannot, and many days with limited functionality; and bad days can’t be predicted. In view of the day-to-day fluctuations common in chronic illness, and unlike those disabilities that require one-off accommodations such as building accessibility or adaptive equipment, the chronically ill tend to require sustained and flexible support.
To add to this, people with chronic illness are more likely to develop other secondary health conditions, and are more susceptible to everyday illness. The number of people, including younger adults, with multiple chronic illnesses has increased markedly over the past two decades (Working Mothers Research Institute, 2016). Compared to 8% in 1995, 18% of adults had five or more chronic diseases in 2015 (Weil et al., 2019). Having simultaneous multiple health conditions can make pain and fatigue worse, further limiting life activities. A 2017 study found that people with five or more conditions have more than double the number of limitations than those with three or four conditions (Buttorff et al., 2017). Tracing impairments attributable to the various conditions in the mix becomes all the more difficult. This makes it challenging for chronic illness sufferers to justify their needs in work and educational settings.
The impact of chronic illness on individuals and society is considerable. The unpredictability of the conditions makes it difficult for the chronically ill to maintain regular, 9-5 jobs. They may end up missing work on bad days, unable to cover their work in the allotted time or cover everything poorly. Often, those with multiple chronic illnesses are forced to drop out of work altogether. All this has consequences for the economy. The total cost in 2016 for treatment for chronic conditions was $1.1 trillion – amounting to 5.8% of US GDP. When lost productivity is included, the total costs of chronic conditions reaches
$3.7 trillion, equivalent to 19.6% of US GDP – that is a staggering one-fifth of GDP (Waters et al., 2018).
Combining chronic illness with full-time study is also a challenge. Students with chronic illness are often forced to miss classes, fall behind with coursework, and maintaining good grades becomes all the more difficult; as well as facing periods of absences lasting months or years, which can take a major emotional and financial toll. Students with chronic illness often start missing social engagements, putting them at particular risk of isolation and loneliness (Herts et al., 2014). Many are forced to drop out of education altogether. A 2011 study found that young adults with chronic illness are only half as likely to graduate from college as their healthy peers - 18% versus 32% (Maslow et al., 2011).
All too often, chronic illness can spiral out of control. A 2018 study found that 35% of those with a chronic illness 15 reported having problems paying medical bills compared to 27% of the overall public (Kirzinger et al., 2018). And unemployment makes it all the more difficult to access medical treatment due to reduced income and loss of employer-sponsored insurance. The unemployed are also more likely to face serious psychological distress and ill health (Driscoll et al., 2012). This can compound the pressure on those who are already chronically ill. Thus poor health may not only be a cause of unemployment for the chronically ill but also an effect.
Most chronic illness cannot be cured, but most can be ameliorated with proper management and support in work or educational settings. Employers and educators must develop an understanding of the energy-draining, pain- inducing, invisible, unpredictable and unstable nature of chronic illness and cater to the needs of the chronically ill in the same way they have learnt to accommodate those with mobility, sensory and learning disabilities. Employers should consider the unique needs of the chronically ill in providing reasonable accommodation, such as time out for medical appointments; remote working arrangements; and flexible working hours. The latter, for instance, could help employees with chronic illness to avoid rush hour traffic or better manage their energy levels and the unpredictability of their conditions.
In educational settings, this may take the form of extensions of time to complete assignments and exams; alternative media for assignments; allocating a place to rest or administer medications between classes; designating note takers for missed classes; leaves of absences for programs of study without serious financial consequences; and retaking courses that have been severely impacted as a result of chronic ill health. Opportunities for studying part- time or reduced course loads may also help students better manage their academic studies and health problems.
The unique and compounded problems faced by the chronically ill needs to be understood and supported by employers and educators. In formulating policy we must remember that it is not the disability/chronic illness that defeats a creative and productive contribution of any particular individual. The chronically ill cannot be magicked away but the barriers they face can be torn down. This must start with increased research and prioritizing this issue. These barriers are social barriers, and it is up to us to understand and overcome them. We should not lose sight of the waste of potential talent and creativity if they are kept in place.
References
Americans with Disabilities Act of 1990 and Revised ADA Regulations Implementing Title II and Title III, United States Department of Justice - Civil Rights Division, Retrieved March 1, 2020, from https://www.ada.gov/2010_regs.htm
Buttorff, C., Ruder, T., Bauman., M. (2017), Multiple Chronic Conditions in the United States, Rand Corporation, Retrieved February 12, 2020 from https://www.rand.org/content/dam/rand/pubs/tools/ TL200/TL221/RAND_TL221.pdf
Driscoll, A., Bernstein, A. (2012), Health and Access to Care Among Employed and Unemployed Adults, NCHS Data Brief No. 83, Centres for Disease Control and Prevention, Retrieved on March 15 from https://www.cdc.gov/nchs/data/databriefs/db83.pdf
Herts, K., Wallis, E., Maslow, G. (2014), College Freshman with Chronic Illness: A comparison with Healthy First Year Students, Journal of College Student Development, 55 (5), 475-480
Kirzinger, A., Munana, C., Brodie, M. (2018), Public Opinion of Chronic Illness in America, Kaiser Family Foundation, Retrieved on March 15 from https://www.kff.org/health-costs/poll-finding/public-opinion-on-chronic-... https://www.kff.org/health-costs/poll-finding/public-opinion-on-chronic-...
Maslow, G., Haydon, A., McRee, A., Ford, C., Halpern, C. (2011), Growing up with Chronic illness: Social Success, Educational/Vocational Distress, Journal and Adolescent Health, 49 (2), 206-212
Waters, H., Graf, M. (2018), The Cost of Chronic Diseases in the US, The Milken Institute, Retrieved February 18 from https://assets1b.milkeninstitute.org/assets/ Publication/Viewpoint/PDF/Chronic-Disease-Executive-Summary-r2.pdf
Weil, A., Dolan, R. (2019), Reducing the Burden of Chronic Disease, Aspen Health Strategy Group, Retrieved March 1, 2020 from https://assets.aspeninstitute.org/content/ uploads/2019/02/AHSG-Chronic-Disease-Report-2019.pdf
Working Mothers Research Institute (2016), Disabilities in the Workplace, Retrieved February 12, 2020 from https://www.workingmother.com/sites/workingmother.com/files/attachments/...