Making Invisible Disabilities Visible: A Personal Reflection

I’m traveling home from NYC with my daughter. It is late. The plane has been delayed for a couple of hours. We check our bags and head over to security. My anxiety increases as we approach the lines of folks taking off their shoes and placing their electronics in the bins. At that moment, I am not anxious because of the myriad threats that exist in this world. I am anxious because I have an invisible disability, and I am painfully aware that in a matter of minutes I may be treated as if I am a threat because of it.

Now I know that the small bits of discomfort that I have experienced in my life in relation to my disability are absolutely nothing compared to the constant oppression experienced by many marginalized groups. I also know that the fact that my disability is unseen makes it a privilege in and of itself. Yet, I am also aware that many folks with silent disabilities feel unseen and often suffer silently.

That very day in NYC, as I waited in the security line, a TSA agent gestured me off to the side. Their movement indicated that I did not have to go through the security machine, but rather through the metal detector. Unfortunately for me, and for some unknown reason, the detector beeped, and I was told to go through the security machine; I did as instructed. I stood with my arms up awaiting the picture to appear on the screen. A person then told me to leave the machine and escorted me to a TSA agent that they described as female. She then explained that something had come on the screen. I let her know that I had an invisible disability and what they saw on the screen was my ileostomy. I proceeded to willingly open the top of my pants and show it to her. She said okay and then let me know that she still needed to give me a full pat down, front and back, and that I also needed to rub my hands over my ileostomy so that she could check for bomb residue. After an embarrassing five minutes she said I could go.

There are so many problems with this situation. The biggest being that the security folks at the airport have absolutely no idea/training on how to manage the disability and because of this they proceeded with protocols that were not only unnecessary, but also humiliating. Because there are no understood, sensitive, consistent protocols, every time I travel I have no idea what will happen when I go through security. I have had full pat down searches (as described above), absolutely nothing, and bomb residue checks. I have also had my luggage pulled out and all of my medical supplies examined.

You may be wondering why I am sharing such personal experiences. The reason is very clear to me. There is so much stigma around disabilities and the sharing of one’s disability, that I have begun to feel, as a therapist, that I am aiding and abetting a terrible system by not sharing my disability. I think it is so important that people can begin to share their disabilities with others as well as see themselves reflected in others, that I decided it was time for me to speak about mine.

Living with a disability of any kind is hard. Every day there are challenges to work through, extra steps to take, and systems to maneuver, but when the world does not believe you have a disability, has made you feel unsafe to share it, has no idea what to do when they find out, treats you with disdain, or does not allow for accommodations, it makes it even harder.

The Center for Disability Rights explains that there is a long list of invisible disabilities such as: “learning differences, deafness, autism, prosthetics, Traumatic Brain Injuries (TMI), mental health disabilities, usher syndrome, bi-polar disorder, diabetes, ADD/ADHD, fibromyalgia, arthritis, Alzheimer’s disease, anxiety, sleep disorder, Crohn’s diseases, and many more.” They also go on to explain that people with invisible disabilities are often “scrutinized by society as looking “able-bodied,” and live in “fear of contempt from their communities.”

As a young person with Crohn's disease, I almost lost jobs because I was not able to be part of the team building boat trip or work the day all the bathrooms broke down and there was just one porta-potty on the top floor. I was not believed when I said I had to miss work because my symptoms flared up. At one point my boss at the time thought I was lying and just trying to get out of work because I was menstruating.

As a person living with Crohn’s, I’ve been yelled at in public bathrooms for taking too long and holding up the line. Now as a proud Crohn’s disease survivor with an ileostomy, I have been given suspicious, contemptuous looks as I leave the bathroom stall because people have heard the automatic toilet flush more than once and are having feelings about the time it has taken me to exit the stall. I have had to decline many social invitations because I know they will want to eat outside where there are no bathrooms and will not understand when I say I cannot do that.

People with silent disabilities are working so hard to manage their bodies, minds, emotions, and thoughts that when people respond in thoughtless judgmental ways it can lead to secondary symptomatology. For instance, people who are managing severe depression who have their jobs threatened, people who are autistic who are treated as suspicious at work or school, or people with chronic pain who are told they are faking it, all are now more susceptible to secondary psychological symptomatology.

March is National Disabilities Awareness Month, and this March I invite everyone to begin to be more sensitive to people with invisible disabilities. I would encourage friends to not make assumptions about what everyone can do, and instead inquire to everyone’s comfort when making plans. This leaves space for the person with a disability to contemplate sharing their disability with you. When people do share their disability, please believe them. It is scary to open up and share something so vulnerable with another person.

For health care professionals including therapists, it is important to not brush past people’s invisible disabilities. People are used to not speaking about them because of a fear about how they may be treated. They therefore may not speak openly to a therapist about not only their disability, but how it feels to live in this society with one, how they have been treated, or the trauma they have endured that has led to their subsequent disability. If you hear that someone is in chronic pain, has MS, has a learning difference, etc., make sure to really listen. They are not just sharing a diagnosis with you to put on their intake form, they are beginning a dialogue with you, an intimate dialogue about themselves, their environment, their past, their fears, and their traumas. This information is a gift; it is a privilege to hear it. Treat it with the respect and dignity it deserves. Hold it even when you feel uncomfortable, and do the work needed to explore your own biases and assumptions around disabilities.