Invisible Disabilities in the Workplace
I used to really struggle with terms like invisible disability, because I don’t necessarily feel that I have a disability. By definition, a disability is any condition of the body or mind (impairment) that limits or prevents the person with the condition from doing certain activities and interacting with the world. My specific invisible disability is Attention Deficit Hyperactivity Disorder (ADHD), which besides being an awful term, is fairly inaccurate. Those with ADHD do not have a deficit in attention; rather, they have an abundance of attention and have to manage regulating that attention. ADHD primarily causes the person with the condition to struggle with executive functioning: adaptable thinking, working memory, time management, and organization.
Research indicates that 4 to 8 per cent of the global population has ADHD, and the level of impairment the person experiences can be moderate to severe. And while many people learn of their ADHD diagnosis in childhood when a teacher refers the child for testing, my own diagnosis didn’t come until I was 39 years old and in my last year of graduate studies. Until I was diagnosed, I had experienced challenges, but did not experience problems at school, at work, or with relationships which would cause me to question whether I had the condition. On the contrary: I am a married mom of two young daughters, hold a managerial position and am well-respected by my colleagues, and at the time of diagnosis I was close to completing my Masters of Education degree. However, in retrospect, there were indicators that pointed to ADHD throughout my life. From elementary to high school I excelled in classes when I was allowed to fidget, but struggled when I wasn’t able to keep my hands busy. I found lectures during university stressful because I would lose focus, and ended up finishing my undergrad degree online. My friends and family are forgiving when I forget plans, and tease me when I start new projects without completing the current one. And while I excel at work, I tend to be a bit of a workaholic by nature, which can be frustrating for my family.
In 2017, the Canadian Survey on Disability (CSD) found that an estimated one in five Canadians (or 6.2 million) aged 15 years had one or more disabilities. According to the study, “About 59 per cent of working-age adults with disabilities were employed compared with around 80 per cent of those without disabilities. (And as) severity of disability increased, the percentage of those employed fell from 76 per cent among those with mild disabilities to 31 per cent among those with very severe disabilities.” This is a sobering statistic. Youth with invisible disabilities are at a much higher risk of not being in school or employed, limiting future earning potential. Something as simple as providing intervention supports helps identify these youth who may fall through the cracks, and help ensure people with invisible disabilities succeed.
Having a disability is more common than you think. So if you don’t know of anyone in your workplace with a hidden disability it may be because they haven’t disclosed, or because they aren’t ready.
I recently was interviewed in Canadian Equality’s (Ex)clusion podcast to discuss more about invisible disabilities here.
Invisible disabilities are fairly common. Disability Screening Questions from the Canadian Survey on Disability (CSD) include disabilities in 10 categories, listed below with examples:
(1) Seeing and (2) Hearing: anosmia (loss of sense of smell)
(3) Mobility, (4) Flexibility, and (5) Dexterity: chronic dizziness, Charcot-Marie-Tooth disease, Ehlers Danlos Syndrome, Myasthenia Gravis
(6) Pain-related: fibromyalgia, chronic fatigue, lupus, rheumatoid arthritis, Interstitial cystitis, Crohn’s disease, endometriosis, irritable bowel syndrome, Lyme Disease
(7) Learning, (8) developmental, and (9) Memory: learning disabilities, dyslexia, ADHD, autism
(10) Mental health-related: anxiety disorder, depression, bipolar disorder, schizophrenia, agoraphobia, circadian rhythm sleep disorders
It’s important to note that some of these hidden disabilities may be more visible due to the more physical impairments they cause: diabetes, epilepsy, Multiple Sclerosis, migraines.
The shared trait of invisible disabilities is that they are primarily hidden and the debilitating level of the condition is not consistent. If an individual has a vision or hearing impairment, or a physical disability, the impairment does not change day-to-day. With invisible disabilities, certain situations or triggers may cause these conditions to flare up or make these conditions more noticeable.
Disability discrimination in the workplace may look much different than discrimination in the public sphere.
When you hear the term discrimination, you may think that in order to be discriminated against, a person has experienced an intentional and negative act because the person is a member of a certain group. But disability discrimination in the workplace isn’t always so clear cut. Negative stereotypes about certain people based on “ableism” (attitudes in society that devalue and limit the potential of people with disabilities) is discrimination. And it can take many forms, including harassment in the form of “jokes,” rude nicknames based on disability, intrusive questioning or remarks about a disability, sharing someone’s disability, and even excluding an individual with a disability from work opportunities and promotions.
Because invisible conditions can be difficult to diagnose, many such conditions often go untreated and individuals are left unsure of what’s “wrong” with them. These individuals are not immune to the jokes about different hidden disabilities. They know the stereotypes. So even if they have concerns they may have an invisible disability, they may not seek a diagnosis and subsequent treatment because they don’t want to be viewed as having a “deficit.” And even if they have chosen to seek treatment and share their diagnosis, they may still face potential prejudice from colleagues, even if protected by law from overt discrimination.
The word accommodation is tricky, especially when in the context of duty to accommodate. As someone with ADHD, I feel like I’ve spent most of my life trying to prove myself and at times taken on additional responsibilities just to show I didn’t need help. Personally, the term feels like those who request adjustments to their workplace are viewed as burdensome, rather than celebrated for the skills they bring to the workplace. Ensuring individuals are given the opportunity to reach their full potential is critical for everyone.
In order to receive formal accommodations, an individual must often formally disclose their disabilities to their employer. However, this disclosure is a personal choice and one that must be considered carefully by the individual. From my research, I’ve found the stigma attached to the condition ADHD is very real, and even prior to my diagnosis, I had many people question whether I had ADHD due to my unconventional approach to projects, only to hear the statement retracted by a statement like “never mind, you’re too smart to have ADHD.” Alternately, I have had friends with autism share that they’ve been told they are too outgoing to have autism, friends with chronic depression told they seem too happy to have depression, and friends with MS told they seem too active to be debilitated. It’s these types of off-hand comments that can be incredibly damaging to individuals with invisible disabilities. It not only perpetuates the myth that neuro typical conditions or invisible disabilities are associated with intelligence or personality, but also prevents those individuals from seeking out the help they need.
The decision about whether to disclose an invisible disability and seek accommodations is also largely dependent on the individual’s work situation. An adult with an invisible disability may have developed successful workarounds that have aided them throughout their lives in their career, until some event puts them over the tipping point and their workarounds no longer work. Then, the burden of concealing their disability becomes stressful, impacting their health and well-being. This may occur when an individual changes jobs, receives a promotion, or is assigned new tasks but has not yet developed tools to navigate the situation. In contrast, disclosure relieves the strain of hiding the condition and provides the individual an opportunity to speak about their condition and help educate those around them on how they do things and what they need to be successful. It increases the chance of finding a support network with others who might have similar conditions or experiences who can share tips for success.
If an employer has been approached by an employee requesting an accommodation, the employer is legally obligated to provide reasonable accommodations, provided the individual has formally shared their disability and are meeting the requirements of their job. It’s important to note that a duty to accommodate is not the same as an employee having preference for how to do their job.
Many people are involved in a formal duty to accommodate process. This can include managers, human resources, labour relations, and legal services, as well as the employee requesting the accommodation. As an employer, the first step is to consult with experts on what supporting documentation is required for an accommodation, while maintaining the individual’s privacy and confidentiality. This includes knowing when it is appropriate to ask for documentation and what type of information you are privy to. Best practice is to consult with your organization’s human resources team for guidance.
The next step for the employer is to learn about the disability. Employers are entitled to receive necessary information in order to provide employees with effective accommodations, but also must adhere to the Privacy Act and respect its principles (being accountable, receiving consent, limiting use, and ensuring information is secure). And while the employer may be curious about the actual diagnosis, the information requested by the employer needs only to focus only on the functional diagnosis (i.e. a physician can provide role limitations without identifying or naming the condition). The employee must cooperate with the organization and provide relevant information to support the request for accommodation. This may include undergoing a health evaluation or assessment, which is shared with the employer on a need-to-know basis.
As noted previously, a duty to accommodate is not the same as an employee having preference for how to do their job – there are limits on the employer’s duty to accommodate. An employer is not required to create a new job description to meet the employee’s requirements, accommodate an employee’s persistent absences unrelated to a disability, or retain an employee who is unable to meet his, her or their employment responsibilities once accommodations are in place simply because they have a disability. The employee must still meet performance expectations. When discussing the accommodations, the employee must be willing to compromise and consider all proposals made by the manager. The proposed accommodations may not be the employee’s preference, but rejecting of reasonable accommodation could demonstrate an employer’s inability to compromise when the employer has met its legal responsibilities. The employee must work with the manager to find the appropriate accommodation solutions.
Under the Canadian Human Rights Act (CHRA), employers have a duty to accommodate employees to prevent disability discrimination, but the process should be equitable to both the employer and the employee. Both parties must be willing to collaborate with the goal of removing barriers for the employee in order for him, her, or they to do their best work. After all, the employer selected the employee based on the skills they bring to the workplace.
Even without formal accommodations, there are ways that employers can support their employees with invisible disabilities. As an employer, it is important to keep an open mind, maintain strong lines of communication, and trust that your employee wants to do their best work but may be struggling due to an undiagnosed condition, or simply may be unwilling to share their condition due to the stigma.
Workplaces can take the following steps to provide informal accommodations for those with invisible disabilities:
Workplaces can demonstrate support for those with invisible disabilities by speaking about diversity from a strength-based perspective and championing different causes that focus on the inclusion of all persons: LGBQT2S+, Indigenous peoples, women, persons of colour, etc.
I’m quite open about my own diagnosis because colleagues have shared their own challenges living with an invisible disability, and the reaction was positive. One senior level executive I worked with frequently joked about his own ADHD, but was also highly regarded and considered brilliant by others in the organization. It is people like him who helped pave the path for me to share my own condition.
The more open an organization is about disabilities and the more management demonstrate a willingness to not only learn themselves, but to be vulnerable, the better it is to ensure those with invisible disabilities feel supported and possibly comfortable speaking about their disabilities. Colleagues may not share a specific condition or have an invisible disability, but chances are, someone they love does. Sharing information about a spouse with ADHD, a sister with lupus, or a child with diabetes and speaking about those people positively helps those with the conditions feel supported.
Changes often start simply with conversations to encourage understanding and remove social stigma.
People with disabilities face barriers others may not even realize. One of these barriers may even be successfully completing an interview process. Personally, I have a terrible memory and rely heavily on my notes. This also means I struggle with recalling examples of past success when asked in situations like a job interview, when speaking about past success is expected. I may have prepared for the interview, but am unable to recall examples without a visual cue. An organization can help remove barriers to those sharing this challenge by simply providing all candidates a piece of paper and a pen at the beginning of the interview so they can write down cues and formulate their thoughts before responding.
For other hidden conditions, like those that are pain related, a robust leave allowance allows individuals the time they may need to take care of their bodies and mental well-being. Alternately, flex arrangements may include giving these individuals the time to work from home if needed.
Another type of informal accommodation may include providing alternative ways of communicating with the employee.
I once was the manager of an individual who very likely had Asperger’s. I could see he was struggling with tasks, and I admit I was annoyed by him frequently interrupting me to clarify what he was supposed to do. Without specifically questioning him about his possible condition, I proposed that we create a schedule where every day, at 10 am and 2 pm, we had a 10 minute check in. During those times he could come to my office prepared with a list of questions or items that required my approval, and I committed to being available to him during those times. As a result, he was much more productive and confident and I grew to appreciate his commitment and perfectionism.
Changing the conversation
One of the best ways workplaces can demonstrate inclusiveness is to be aware of how certain conditions are discussed. Terms like “being so ADHD” or “such a spaz,” are triggering for those living with certain conditions.
As well, people with disabilities are people first and foremost, and not their condition. I personally don’t want to be called inspirational or brave unless I’ve done something worthy of accolades, rather than simply living my life. This is a backhanded compliment and assumes the person receiving the compliment is less than and deserving of sympathy simply because they have a disability. As well, workplaces should not judge someone’s intellectual capacity based on an invisible disability and the individual doing things a bit differently. On the contrary. Many successful people with invisible disabilities show tremendous intelligence and tenacity as a result of developing workarounds that help them be successful.
Lastly, while many articles are written regarding ways employers can support employees with invisible disabilities, not a lot is written of how employees can support employers with hidden conditions. This may be because employees are afraid to ask. Chances are, if your boss has a hidden disability, he, she or they know what they need from their team to be successful and have spent years developing workarounds.
I am fortunate to have an incredible team, and I have shared my diagnosis with them. This has been mutually beneficial in different ways. They recognize that if I forget to respond to an email, it’s okay to remind me, and that if I ask them to edit a document, I genuinely would like their feedback. They also see the strengths that they bring to our team and that they are valued and supported to do their best work, just as I am.
Highly successful individuals with invisible disabilities
Autism: Dr. Temple Grandin, Dan Aykroyd
ADHD: Robin Williams, Zooey Deschanel, Michael Phelps
Dyslexia: Jennifer Aniston, Steven Spielberg, Keanu Reeves
Dyslexia and ADHD: Richard Branson, Cher
ADHD and OCD: Howie Mandel, Justin Timberlake
Anxiety and Depression: Kristen Bell
Lyme Disease: Shania Twain
Lupus: Selena Gomez
Hashimoto’s disease: Zoe Saldana, Gina Rodriguez
Diabetes: Nick Jonas, Halle Berry, Tom Hanks
MS: Selma Blair, Jack Osbourne
Fibromyalgia: Lady Gaga, Morgan Freeman
Bipolar disorder: Mariah Carey, Demi Lovato
Robyn Hanson is an experienced Communications Manager with a demonstrated history of working in government administration. She is skilled in business planning, crisis communications, corporate communications, editing, and critical thinking. Robyn has strong media and communication experience and has a Master of Education. Her educational research focused in ADHD and Mental Health.
Learn more about Robyn on LinkedIn or Instagram.[/vc_column_text][/vc_column][/vc_row]