Invisible disability

A woman holding a sign that says "LD = Less equally intelligent / Strike out stigma" poses for a photo in Times Square with a man holding a sign that says "Take a picture with a proud dyslexic". The event was held by Project Eye-To-Eye to raise awareness of Learning Disabilities Month.

Invisible disabilities, also known as hidden disabilities or non-visible disabilities (NVDs), are disabilities that are not immediately apparent. They are typically chronic illnesses and conditions that significantly impair normal activities of daily living.

For example, some people with visual or auditory disabilities who do not wear glasses or hearing aids, or who use discreet hearing aids, may not be obviously disabled. Some people who have vision loss may wear contact lenses.

Invisible disabilities can also include issues with mobility, such as a sitting disability like chronic back pain, joint problems, or chronic pain. People affected may not use mobility aids on some days, or at all, because severity of pain or level of mobility may change from day to day. Most people with repetitive strain injury move in a typical and inconspicuous way, and are even encouraged by the medical community to be as active as possible, including playing sports; yet those people can have dramatic limitations in how much they can type, write or how long they can hold a phone or other objects in their hands.

Mental disorders or developmental disabilities, such as ADHD, depression, anxiety, addiction, dyslexia, autism, or schizophrenia, are also classified as invisible disabilities because they are usually not detected immediately by looking or talking to a person.

People with disabilities may experience solely visible or invisible ailments, while others experience both visible and invisible impairments. This includes impairments that may only be visible due to specific circumstances.

96% of people with chronic illnesses have an invisible disability. It is estimated that 1 in 10 Americans live with an invisible disability. This number is likely higher worldwide, as 80% of all people with disabilities live in developing countries.

Impact

Invisible disabilities can hinder a person's efforts to go to school, work, socialize, and more. Although the disability creates a challenge for the person who has it, the reality of the disability can be difficult for others to recognize or acknowledge. Others may not understand the cause of the problem, if they cannot see evidence of it in a visible way. Due to a lack of awareness and difficulty accessing support in certain environments, individuals with invisible disabilities may face challenges throughout daily life. Some people may go through a majority of their life until being properly diagnosed as providers can be unfamiliar with certain conditions or due to socioeconomic status. Students with cognitive impairments find it difficult to organize and complete school work, but teachers who are unaware of the reason for a student's difficulties, can become impatient. A columnist for Psychology Today wrote:

I recently met Grace, a woman who had a traumatic brain injury when she was sixteen years old. She was in a car accident, an all too common occurrence. An accident occurs, the head hits a part of the car and internal damage to the brain results, ranging from mild to severe. Grace shows no outside cues of brain damage. There are no visible cues of her head injury. Grace's walking, vision and physical reflexes look "normal." [...] People look at Grace and assume she is fine and then react to her difficulty as if she is being lazy or choosing to be obstinate. Teachers' judgments of Grace have been based on assumptions made from Grace's physical appearance.

This lack of understanding can be detrimental to a person's social capital. People may see someone with an invisible disability as lazy, weak, or antisocial. A disability may cause someone to lose connections with friends or family due to this lack of understanding, potentially leading to a lower self-esteem. Individuals with invisible disabilities may experience guilt and feeling misunderstood when asking for support which can result in negative self-perception. Receiving accommodations can be a complex process of acquiring and submitting documentation of disability, which employers and educational institutions can deny or deem as outdated. Specialists and resources may be scarce, far and few between, with long waiting periods of up to several months, or even years. Someone who has a condition that is not immediately visible, such as chronic migraines, may struggle with the fear of being accused of faking or lying when it comes to asking for accommodations.

A disability that may be visible in some situations may not be obvious in others, which can result in a serious problem. For example, a plane passenger who is deaf may be unable to hear verbal instructions given by a flight attendant. It is for this reason that travelers with a hidden disability are advised to inform the airline of their need for accommodations before their flight. One such passenger wrote in The Globe and Mail that:

Once, flying to Washington shortly after 9/11, I didn't hear the announcement that absolutely no one was to get out of their seat for the last 30 minutes of the flight. Normally, I get up to use the washroom 20 minutes before landing. If the nice stewardess had not remembered me and come over to my seat, crouched down to my eye level, and told me that if I had to use the washroom, I had better use it right now, who knows what might have happened. I later learned the air marshals on board would have thrown a blanket on me and wrestled me to the floor.

Some employees with an invisible disability choose not to disclose their diagnosis with their employer, due to social stigma directed at people with disabilities, either in the workplace or in society in general. This may occur when a psychiatric disability is involved, or a number of other medical conditions that are invisible. Researchers in the human resources field may need to take this non-disclosure into account when carrying out studies. Many people who think of those with a disability generally consider them lower to middle class due to their medical costs, and also because many people with disabilities often lack reliable, full-time employment. According to one US survey, 74% of individuals with a disability do not use a wheelchair or other aids that may visually portray their disability. A 2011 survey found that 88% of people with an invisible disability had negative views of disclosing their disability to employers. A 2022 study on disabled students found that those with invisible disabilities felt less supported by their educational institution than their visible counterparts. Students with visible disabilities are more likely to identify as disabled and disclose their identity compared to students with invisible disabilities. Data from the Bureau of Labor Statistics in 2017 states that the unemployment rate for individuals with an invisible disability is higher than those without one. The unemployment rate for people with a disability was 9.2%, while the rate of those without was less than half of this at only 4.2%. BBC states that people with HIV specifically have an unemployment rate three times higher than those without HIV. Lower call-back rates have been observed in job applicants who choose to disclose their disability to possible employers.

Beyond the work force, Bureau of Labor Statistics data also showed that individuals with an invisible disability are also less likely to receive a bachelor's degree or higher education. People with disabilities are more likely to face difficulty accessing financial support; a UK study reports that disabled people pay approximately £583 average per month out of pocket on additional costs regarding their disability. Nature, a scientific journal, interviewed an individual who struggles with chronic fatigue syndrome who reported attending 117 doctor appointments and paying $18,000 in out-of-pocket expenses in 2017 alone. Insurance may not cover treatment, especially if it is experimental.

Prevalence

Worldwide

Based on findings by the World Health Organization, there are approximately 1.3 billion people that experience significant disability worldwide, representing at least 16% of the global population.

United States

In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling.

Nearly one in two Americans (165 million) has a chronic medical condition of one kind or another. However, most of these people are not actually disabled, as their medical conditions do not impair normal activities.

Ninety-six percent of people with chronic medical conditions live with a condition that is invisible. These people do not use a cane or any assistive device and act as if they did not have a medical condition. About a quarter of them have some type of activity limitation, ranging from mild to severe; the remaining 75% are not disabled by their chronic conditions.

United Kingdom

In the United Kingdom, a survey conducted from 2020 to 2021 found that over 1 in 5, 28%, of individuals are disabled, an estimated 70 to 80% of these disabilities being invisible.

Australia

In Australia, an article published in November 2022 states that of the approximately 4.4 million disabled Australians, an estimated 3.5 million or 80% of them have an invisible disability.

In 2018 there were 205,200 autistic Australians or 4.66% of the disabled population. Of these, 40.8% reported an unmet need for assistance with cognitive or emotional tasks.

Legal protection

On 13 December 2006, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) was formed, which in turn provides worldwide legal protection for persons with disabilities. With 82 signatories on the initial day, the CRPD became the first comprehensive human rights treaty of the new century, coming into effect on 3 May 2008, while emphasizing a shift of viewing persons of disabilities as "objects" of charity to recognizing them as individuals with rights. The Convention addresses various facets of the lives of persons with disabilities, ensuring their rights in areas such as education, employment, healthcare, accessibility, privacy, and cultural and sporting activities.

Americans with invisible disabilities are protected by national and local disability laws, such as the Americans with Disabilities Act which outlaws the discrimination of people living with disabilities.

In the United Kingdom, the Equality Act 2010 (and the Disability Discrimination Act 1995 before it) require employers to make reasonable adjustments for employees with disabilities, both visible and invisible. The nation has a number of other policies and acts relevant to invisible disability such as the Mental Capacity Act 2005, Care Act 2014, and Autism Act 2009. Access to Work (ATW) and the Disabled Students Allowance (DSA) are examples of government programs that provide support for disabled people in the workforce and educational institutions.

Responses

A growing number of organizations, governments, and institutions are implementing policies and regulations to accommodate persons with invisible disabilities. Governments and school boards have implemented screening tests to identify students with learning disabilities, as well as other invisible disabilities, such as vision or hearing difficulties, or problems in cognitive ability, motor skills, or social or emotional development. If a hidden disability is identified, resources can be used to place a child in a special education program that will help them progress in school. A number of universities worldwide have formulated policies to implement and enhance support services.

One mitigation is to provide an easy way for people to self-designate as having an invisible disability, and for organizations to have processes in place to assist those so self-designating. An example of this is the Hidden Disabilities Sunflower, initially launched in the UK in 2016 but now gaining some international recognition as well. Another similar example is the Help Mark badge created by a Tokyo Metropolitan Assembly member who had an artificial joint in her right leg. The badge design was done by Tokyo Metropolitan Government in 2012 and was used to spread awareness of hidden disabilities in preparation for the 2020 Tokyo Olympic and Paralympic Games.

Campaigns

In the United Kingdom, activist Athaly Altay began the End Fake Claiming Campaign in 2021, to raise awareness of the widespread harassment faced by people with Invisible Disabilities. The campaign calls on the UK government to update hate crime laws to make fake claiming a specific hate crime.

Signs displaying the message "Not Every Disability is Visible" were campaigned by Crohn's & Colitis UK to be installed in organizations and businesses.

See also

• Disability etiquette
• Equal Employment Opportunity Commission
• Social model of disability

Further reading

• Sveilich, C. (2004). Just Fine: Unmasking Concealed Chronic Illness and Pain. Avid Reader Press. ISBN 0-9700150-4-6.

External links

• Invisible Disabilities Association nonprofit organization based in Parker, Colorado
• ButYouDontLookSick.com website, blog, message board and chatroom