I am a part of several Traumatic Brain Injury support groups. As a two-time Traumatic Brain Injury survivor – as a person with one of many invisible disabilities – I rely on the safe spaces these groups create for me to be able to talk about my struggles and recovery. One of the biggest trends I notice across all these groups is just how much those of us with invisible disabilities are discounted, misrepresented, discriminated against, and excluded from mainstream conversations. I have personally experienced this discrimination, but to see it so rampant in my community is incredibly disheartening. The status quo needs to change. I’m not just saying that because this is an issue that is deeply personal to me. The fact is that the exclusion of those with invisible disabilities not only reduces the strength and potential of the American workforce, it also leads to astronomically high healthcare costs for all of us. Both of these points could be addressed simply by including those of us with invisible disabilities (more details on this below).
As a whole, invisible disabilities, or hidden disabilities, are a part of the overall spectrum of conditions that are legally protected by the American Disabilities Act. But, the reality is that many of these invisible conditions aren’t listed on disability disclosure forms. Even when they are, special accommodations are only handled in terms of whether current policies cover them or not. And, they mostly don’t cover the needs of those with invisible disabilities. On top of that, those with hidden conditions have to deal with a two-pronged stigma from the general society. There is the stigma of having a disability, and, the stigma that someone might be faking their conditions because they are not immediately apparent.
Today, I want to unpack some parts of this complicated matter in hopes to bring much needed awareness to the treatment of the invisible disabilities population. To dissect all facets of this issue in a way that does justice is far beyond the scope of a single article. But, we most certainly need to have several conversations about the inclusion of people with invisible disabilities, and this is a great starting point for it.
What are invisible disabilities and conditions?
Invisible disabilities are any physical, mental, cognitive or neurological conditions that limit a person’s range of functioning, and aren’t immediately recognized by an onlooker. One of the problems with creating an all-encompassing list of invisible disabilities is the sheer number of conditions that qualify. There are literally hundreds of conditions and symptoms that are invisible or hidden disabilities, including but not limited to, Autism Spectrum Disorders, Traumatic Brain Injuries, Multiple Sclerosis, Crohn’s Disease, Autoimmune Diseases, Clinical Depression, PTSD, Anxiety Disorders, Fibromyalgia, Endometriosis, Learning Disabilities, ADD/ADHD, HIV, Chronic Pain conditions, Chronic Fatigue conditions, Hearing impairments, Visual impairments, and so on and so forth. Additionally, the severity of these conditions and the frequency of symptom flare up also highly vary from person to person and from day to day, making it even more difficult to create a substantial list. However, the difficult nature of defining the criteria of invisible disabilities shouldn’t mean that this entire segment of the population should be stereotyped or disregarded completely, especially because there are many more of us who fall into this category than we can imagine.
What is the prevalence of invisible disabilities in the United States?
When all of these invisible disabilities and conditions are taken into account, nearly 1 in every 2 Americans lives with one chronic condition, and 1 in every 4 Americans has two or more chronic conditions that impair their life functions without some extra help. An estimated 96% of us who live with a disability have an invisible one, and nearly three-quarters of us who live with severe disabilities don’t use immediately visible aids such as wheelchairs. Within the realm of Traumatic Brain Injuries, one-fifth of the entire U.S. population lives with either a diagnosed or undiagnosed brain injury. Annually, about 2.5 million Americans sustain a TBI, about 80,000 of which result in death.
What about work and employment? Only about 40% of the disabilities population is employed, compared to the 73% of the non-disabled population. This puts those of us with disabilities at a considerably higher risk of homelessness, poverty, unemployment, and, having limited or no access to the healthcare support that is crucial for them to function and flourish. Within the employed American workforce, one in three people in White Collar jobs have disabilities, and, 62% of this segment of the workforce lives with invisible disabilities that they may or may not disclose due to stigma and fear of discrimination. In many ways, the prevalent response of discrimination against those with disabilities – especially invisible disabilities – propagates traumatic experiences that continue to victimize us and create barriers for growth and improvement.
How does the general public perpetuate trauma for those with invisible disabilities?
A traumatic experience, according to the American Psychiatric Association’s DSM-V, is one in which a person experiences, witnesses, or is repeatedly exposed to aversive details of actual or threatened death, serious injury, sexual violence, or threat to the physical integrity of oneself or others. The DSM-V now also includes the possibility that those who learn about traumatic events experienced by close family members or friends may themselves experience trauma. According to this, almost everyone, whether with or without a disability – visible or invisible – has experienced trauma in their lifetimes, if they have ever been physically, sexually or mentally injured, or if their sense of self and physical integrity has been threatened. Those of us with disabilities experience and re-live our traumas in the acquisition and daily management of our conditions. But, we also experience further trauma in the form of stigma, prejudice, and discrimination from the general public.
Here are a few of the things I have personally heard in my life about my invisible Traumatic Brain Injuries and my raw, unfiltered, unvoiced, internal reactions next to them:
“… But you don’t look like I imagine a brain injured person would!”(What exactly are people with brain injuries supposed to look like? Should I have a gaping hole in my skull? Would that make it more acceptable?)
“… You look and act so normal!” (Gee, thanks. So do you. What a coincidence.)
“… You don’t act … slow or damaged… at all!”(… Walk away, AJ. Just walk away.)
“… It’s all just in your head. You should get over it!” (I have a brain injury. Where would it be if not in my head? My kidneys, perhaps? Maybe my foot.)
“… Stop focusing on your disability.” (I don’t focus on it. I live with it every minute. I never got a choice in the matter.)
“… You shouldn’t tell others about your condition. It makes people uncomfortable. You’ll never get work/make friends/find a spouse/be taken seriously.” (Sure. Yes, please let me hide a part of myself for the sake of your comfort and convenience. Pretty please!)
“… Do you really have a brain problem because you seem like you’re faking it for attention.” (… Breathe, AJ. Just breathe. Breathe in. Breathe out. Don’t flip out. It is not worth it.)
“… If you really have a brain injury, show me your medical reports. Otherwise I know you’re lying.” (Excuse me… HIPAA and general health privacy mean anything to you?)
“… You should move on with your life and forget about your injury.” (Exactly how would I do that when I live with it? Also, I wish I could. Trust me. I really wish I could.)
“… you get migraines? Oh yea. I get headaches. You should <insert pseudo-medical advice here>. Worked wonders for me.” (How can I ask if they’ve gotten their brain scrambled recently without minimizing their pain?)
“… It’s all in your gut. If you changed your food habits, you would feel so much better.” (If I didn’t have two TBIs, I would feel so much better.)
“…you’re still talking about those TBI problems? Its been, what? More than 10 years? Shouldn’t you be better by now?”(How? Did I miss an opportunity to get a brain transplant somehow?)
The fact is that at the end of the day, the millions of us with invisible disabilities are so much more than just our conditions. Our disabilities don’t define the entirety of our identities. Our conditions are a part of what happened to us. But, they don’t undermine any aspects of the abilities we do have, or our vibrant, full, talented lives. Yet, we are not able to be authentic about our lives because of the stigmas, disbelief and negativity we face, especially in workplaces. Unfortunately, others still dictate and impose various levels of trauma on us, stemming from all the microaggressions mentioned above and more, that we have to navigate through every single day. We usually don’t respond, or file complaints about discrimination because we are terrified of putting our jobs at risk. This essentially means that we are going through our lives in unsafe spaces that are semi-openly hostile to our health and well-being. These types of comments and behaviors rip to shreds, any fantasies of belongingness that we dream about, and that we inarguably need.
Organizations are in a powerful position to promote trauma informed practices And Include.
The implications of trauma’s impact on people’s lives have been on the forefront of multi-disciplinary health research for the past decade. Physicians, clinicians and researchers have focused on understanding the effect of traumatic experiences on the body, the brain and the mind. There has been considerable progress made on the development of much needed trauma informed healthcare models and practices, so that practitioners don’t inadvertently re-traumatize the very patients who need ongoing treatment and care. These practices can be modified, adjusted to context, and practiced across all aspects and spheres of life, especially in organizations.
Our disabilities may be invisible, but we are just as visible as any able-bodied person in society. Organizations and leadership have a tremendous opportunity to promote inclusive leadership by empowering those with invisible disabilities. In doing this, we can unlock the barriers that people create in their own minds with fixed mindsets about us. Those of us with invisible disabilities aren’t any less than those without; in fact, our traumas and recovery journeys have turned many of us into powerful, insightful Warriors who make for great leaders. Including us is a great exercise in developing empathy and equity, and reducing assumptions about what constitutes “wholeness” in people. In a previous post, I talked about the critical importance of focusing on mental health needs in workspaces. Addressing the needs of the invisible disabilities population – many of whom live with mental health conditions – is a big step in developing this focus.
Currently existing Diversity and Inclusion initiatives may not reflect this perspective because they treat the mental health of their employees as merely a measureable outcome of their actions. For the focus to shift to mental health support and promotion, mental health needs to be a driver of inclusion. This might mean a fundamental shift of organizational strategy, where inclusion is no longer listed as a separate goal, but is rather considered to be the only sustainable underpinning of all goals. When organizations start to show that they care about all of their employees and their needs holistically, it is almost inevitable that employees’ productivity, engagement and loyalty increases and becomes sustainable for the long term. In this day and age of job-hopping and employment instability, understanding and tending to the entire spectrum of employees’ needs is the only way for organizations to set themselves apart from their competitors, and, to increase revenue and profits by engaging with their employees and customers in meaningful ways.