Invisible Disabilities within Society and Policy

                In contemporary society, disability has developed into a widely used word that describes several different varieties of illness, disease and disabled bodies.  Throughout extensive discussion in class around diverse disabilities around the world, we specifically studied the concept of invisible disabilities. There are many individuals and several different diseases and illnesses that fall under this notion of invisible disability, because having a condition or disorder that is immobilizing, also may not be easily recognizable or noticeable to a passerby. According to a definition created in a group activity by Christine, Kourtney and I, invisible disability is defined as a mental, physical, emotional or social disease or illness that is within or outside the body that prevents one from performing daily activities “normally” (to societal standards of capability), this disability can be medically diagnosed or self diagnosed. Invisible disability is significant to the modern day because of the lack of awareness and acceptance in society, and specifically within policy regarding disabled bodies.
           
              One of the key aspects of invisible disabilities is the lack of awareness in society. The
underlying factor of invisible disabilities is that they are truly invisible and therefore it is hard for
someone outside of the disabled body to simply identify that there is immobility within that individual. Since awareness and familiarity of an invisible disability is so commonly ignored, many issues have occurred for the disabled individual and has caused society has a whole to overall disregard disabilities that are unnoticeable. In further detail, an individual with a disability can be standing right in front of you at any given moment in time, but you may not have any idea simply because you cannot see it. One of the best in class examples of an invisible disability is the video of Brianna Couture.

           

In this video we see three girls all claiming to be Brianna Couture; a young 15 year old girl who is suffering from a severe disease called Mitochondrial Disease. Brianna has a disease that cannot be seen just by looking at her, so all three of these girls are claiming they are the real Brianna although two of them are healthy and one of them has this severe disease. Mitochondrial disease is a physical illness that impairs the immune system and many other internal organs, which are obviously not seen outside of the body. This disease causes fatigue, seizures, immobility and other health implications that prevent Brianna from living a normal healthy life, although if one was to see Brianna out on the street they would misidentify her as someone who is perfectly healthy because she looks it. In the video Brianna states “because we look like you, you expect us to act like you”, meaning just because she seems like she looks perfectly normal and one might assume she is healthy, people should not instantly judge her as a health individual and expect her to function and act like one. Her disease causes intensive fatigue that sometimes forced her to take the elevator at her school and other students would comment on her using assistance that was created for people who are “really handicap”. It is apparent that these other students lacked the awareness of her invisible disability, because they couldn’t see her mitochondrial disease they assumed she was a healthy human being, when on the inside she was suffering from this severe disability.

The video concludes by the three girls telling the truth about who is the real Brianna Couture, since all three looked perfectly healthy but were claiming they were this girl named Brianna with this disease. The viewer realizes that the second girl is really Brianna Couture but that is undetectable throughout the video because she does appear to be perfectly healthy just by looking at her. The idea behind the making of this video is extremely intriguing because it is trying to spread awareness about invisible disability to the viewer, and at the same time it is forcing the viewer to naively lack awareness of the disabled body in the video because it isn’t until the end that it is confirmed who is the actual one out of the three girls with this severe condition. The fundamental concept of this video was to show viewers that society has this preconceived notion that if an individual is disabled it is a disability that can be physically seen, and the Brianna Couture video challenges this notion by showing three girls who look perfectly healthy and then having the viewer uninformed of who truly has the disability until the end of the video since it cannot be physically seen, and this creates exposure of invisible disabilities within society.

There are several other instances that are similar to the Brianna Couture video, that show society’s lack of acknowledgement of invisible disabilities. These pictures are examples taken from a campaign at Elon University that challenged ableism by promoting disability, accessibility, and Disability Services.

 

 

             These photos show college students who look perfectly healthy, just like the girls in the Brianna Couture video, but they have disabilities. The objective of these photos is to promote awareness on campus at Elon University that there are individuals who may look healthy but can still very well be people who are disabled. Since society has this idea that disability is something that must be physically seen, there are many people who do not recognize invisible disabilities, and by showing these photos as a part of promotion for disabilities on campus and disability services, Elon University is confirming the fact that there are many individuals and students who do not look disabled but truly are disabled. This promotion is beneficial to both the individual who is invisibly disabled as well as the university’s community as a whole, because it is spreading awareness as well as eliminating future social stigma that is created around individuals using disability assistance when they don’t really need it because they don’t necessarily look disabled, similar to the elevator incidence at school in the Brianna Couture video. By presenting these photos around campus, Elon University is constructively attempting to create a society that is conscious of invisible disability by starting off within their own campus, by compelling students to recognize individuals with unnoticeable disabilities.

Elon University: Challenge Ableism

                  In addition to the promotional photos that were designed by Elon University, these next set of photos were found on the social media network called Tumblr, which is a website designed as a blogosphere, where people from around the world can post texts, links, quotes and pictures in the form of a blog that can be viewed by anyone on the Tumblr webpage. After entering the words “invisible disability” into the search engine on Tumblr numerous amounts of pictures similar to the Elon photos, appeared from people blogging about invisible disabilities.    

 

                     I believe these pictures from Tumblr were also created to spread awareness about society’s lack of acknowledgement of invisible disabilities. The first photo shows a pair of hands chained together trying to catch a butterfly and the words say “I do not look sick, and you do not look stupid.. looks can be deceiving”. The image of the hands that are chained but are trying to catch a butterfly is symbolic of an individual who has a disability, because similar to the hands who cannot catch the butterfly because they are chained, the individual is restrained from doing daily activities and other “normal” things because their disability prevents them from doing so. The text on the picture is even more powerful, because “looks can be deceiving” is stated since the individual is letting their ignorance define them as stupid since they are disregarding the person with an invisible disability as disabled, so the disabled person is saying well you don’t look stupid but you are for misjudging my disability. The second photo is says “warning: wheelchair approaching may cause starring”. This is a very straight forward message from this photo because it is letting viewers know misjudging someone because they don’t look like they need a wheelchair is wrong. In similarity to the elevator situation in the Brianna Couture video, individuals using wheelchairs who may not look like they need one are being starred at and stigmatized by individuals within society. This photo is spreading awareness about invisible disabilities because it is saying warning I might not look like I really need a wheelchair but obviously I do because I am disabled even though you might not be able to physically see that. Overall I believe both these photos are powerful ways to encourage  individuals to accept the concept of invisible disabilities and also acknowledge their existence.

The spread of awareness of these invisible disabilities can be narrowed down by determining some of the diseases and illnesses that are present in contemporary society that are disabling and also unnoticeable by outside individuals. There are numerous amounts of different diseases that cause disabilities that cannot be seen including the disease that Brianna Couture has called Mitochondrial disease as well as another example which is a form of Dysautonomia called postural orthostatic tachycardia syndrome (POTS). In the definition that I created along with some of my peers, we distinctly included the phrase in which an invisible disability can be medically or self diagnosed, this is an extremely important component of the definition when examining POTS  as invisible disabilities. For instance, POTS is defined as

“Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising.”

by the National Institute of Neurological Disorders and Stroke.

 Definition of POTS from webpage

 I was first introduced to POTS as an invisible disability after finding a letter written by a 19 year old woman who was trying to contact the Ellen DeGeneres Show in order to spread awareness about this disorder. The letter was as follows:

"I am Nicole Sharp and I have a form of dysautonomia call postural orthostatic tachycardia syndrome (POTS) and I suffer from many unseen yet debilitating symptoms, such as low blood volume, chest pain, palpitations, dizziness, severe fatigue, and it also causes me to faint. I was first misdiagnosed with anxiety but was persistent that there was something wrong and it took dozens of doctor and ER visits and four hospitalizations within four months before I was diagnosed. I thought my life would finally be better when I was diagnosed instead it got worse. I have yet to find a doctor properly educated in dysautonomia, many doctors still treat me as if I am a hypochondriac or as if it is anxiety. The treatments have not worked and I am searching for doctors to try other treatments. Many people treat me as if I am a hypochondriac or even faking for attention. I have met countless other people who have similar stories as I do because people and doctors are not aware of dysautonomia and how we suffer silently. I spend many days in bed, and my others in emergency rooms and doctors offices, I am waiting to go to Mayo Clinic but that may take as much as a year. I am 19 and rarely leave my house because I do not have the energy to walk and afraid to use my wheelchair because people do not understand my invisible illness and treat me badly for it. Please help spread awareness so me and all of the other people suffering can gain some understanding."
 

Website of Nicole's Letter

In Nicole’s letter she states the symptoms of her disorder include severe fatigue and other immobilizing symptoms. These symptoms can largely impact her capability of performing daily activities, and therefore POTS can be seen as an invisible disability. It is important to include the fact that Nicole was regularly misdiagnosed with this disorder by doctors and other medical institutions, because obviously her immobility from the symptoms was actually causing health implications for her. My definition of invisible disability clearly states that disability can be self diagnosed for this very reason. It is imperative to acknowledge the idea that not only do individuals within society ignore invisible disabilities, but persons within medical communities may also disregard disability. Since Nicole’s disorder causes her to become very fatigue in many situations, this causes immobility for walking or moving long distances. Individuals in Nicole’s circumstance are most likely going to use disability services such as elavators, wheelchairs, handicap parking etc. Like Brianna Couture, Nicole does not look handicap and therefore may be judged by individuals in society if she is seen using these disability services, although she is entitled to use them. This can be problematic for individuals like Nicole because she states that she rarely leaves her house because she does not want to be judged for using a wheelchair since many people do not understand her invisible disability. This notion of rejection that Nicole fears, further emphasizes my importance of social accpetance of invisible disbilities.

                  In addition to lack of social acceptance of invisible disabilities within society and sometimes medical communities, there are also many situations in which policy disregards invisible disabilities as well. As an aspect of my own comparative discussion I used the example of the policy in Massachusetts regarding handicap placards for vehicles. For my discussion I brought in the Massachusetts Department of Transportation policy that states

Massachusetts Handicapped Plate and Placard Law
G.L. c. 90, § 2
HP plates and placards are issued through the Registry of Motor Vehicles to eligible people with disabilities. As discussed under the parking laws above, they entitle holders:
• to park in designated HP spaces,
• to park longer than usual time limits,
• to park at parking meters free of charge, and
• to make use of the gas station law.

The rights, responsibilities and privileges of plate holders and placard holders are the same. The Registry’s Bureau of Medical Affairs determines eligibility according to physician’s documentation. Only people who meet the disability definition and who are the registered owner of the vehicle and who are licensed drivers may receive plates. Anyone who meets the disability eligibility requirements can get a placard. Individuals who meet the disability eligibility requirements for both plates and placards can choose either a plate or a placard.

Disability Placard Law

This policy has several issues pertaining to invisible disabilities because the level of disability is solely decided on by the Massachusetts Registry’s Bureau of Medical Affairs, not the individual’s doctor or the individual themselves. As previously stated, invisible disabilities can be medically or self diagnosed and in many cases, the Medical Affairs Bureau does not properly recognize these individuals as having a disability that would require a placard. In addition to the policy regarding placards, individuals who believe they need a placard have to fill out an application that must be completely by themselves and their doctor. The doctor has to fill out the section that regards to the only criteria that is recognized as health implications that are suitable for a handicap placard, which include “Unable to walk 300 ft without assistance, legal blindness, chronic lung disease, cardiovascular disease, arthritis and loss of limb”. This are the only reasons in MA that are applicable to getting a handicap placard, and in some cases even when the doctor checks yes to one of the criteria the RMV Medical Affairs has the authority to determine whether or not a placard is truly needed. In the case of Nicole, who has virtually diagnosed herself with severe fatigue after she was turned away by several doctors, she would probably find herself in a predicament where she would have little chance of being able to obtain a handicap placard by the RMV’s Medical Affairs, because the doctor probably would not check off the criteria. In cases such as Brianna Couture, her disease is not listed on the criteria, so would she qualify for a placard in Massachusetts? It is very shocking to me that this Medical Affairs Bureau, which is a group of individuals residing in Boston has the authority to determine whether or not people need handicap placards from across the state when they do not even know these individuals or their personal situations regarding their disabilities and mobility. The state of Massachusetts is part of the society that needs more awareness about the invisible disabilities that are currently present.

 Handicap Placard Application

The lack of awareness in Massachusetts about invisible disabilities regarding handicap placards led me to a website called InvisibleDisabilites.org. Within this webpage I found an article called, “Don’t Judge by Appearances – Accessible parking rights & needs for people with invisible disabilities.” This article began by talking about society’s perception on people who don’t “look” like they need to be parking in a handicap stop, and the stigma that these individuals create around who is and who isn’t disabled. Throughout the article, the author mentions people who would qualify for a handicap spot although they don’t physically look like they need one, including “Back Injury, Brain Injury, Chronic Illness, Chronic Pain, Heart Condition, Muscular Disorders, Neurological Disorders, Seizure Disorders, Spinal Disorders, Bone Disorders, Chronic Injuries, Organ Transplant, Oxygen Impairment, Difficult Pregnancy, Prosthetic, Surgery and several others”. This list is very extensive and includes most of the diseases that would cause invisible disabilities unlike the Massachusetts Handicap policy, although it is unclear which state this applies to and if it reflects an actual policy from a specific state. In my opinion, states such as MA should be more open to invisible disabilities especially in terms of giving individuals handicap placards because it is imperative to acknowledge and spread awareness about these disabilities rather than shunning them away.

Don't Judge by Appearances article

              In today’s society invisible disabilities are not being acknowledged properly and more awareness needs to be spread about the issues that can arise from the lack of familiarity with invisible disabilities. Invisible disability is a term that covers an endless amount of mental, physical, emotional or social diseases, disorders, and/or illnesses that cause impairments within or outside of the body during daily activity for individuals who suffer from these disabilities, and whether or not the individual self diagnoses or is diagnosed by a medical care provider these disabilities should be recognized even if they cannot be seen. Since improper recognition of these disabilities that cannot be physically seen is happening in our society, further awareness needs to be spread in order to discontinue  stigma that occurs from what disabled people should look like. In the cases of Brianna and Nicole who are both affected by invisible disabilities it is important to understand that although they make look perfectly healthy on the outside there is internal implications that are causing disability, so thinking they should act “normal“ because they “look” normal is unacceptable. Campaigns such as the Brianna Couture video and the photos taken for the promotion at Elon University are useful ways of spreading awareness within society. By spreading awareness in society about invisible disabilities, there is opportunity for policies, such as the policy about handicap placards in MA to be improved.  In the state of MA, the Medical Affairs Bureau is the only authority allowed to issue handicap placards and because of the criteria listed for needing a placard is so limited, there is little opportunity for individuals with invisible disabilities to obtain the proper assistance that they need. By continuing awareness and making society more proactive about the familiarity of invisible disabilities, the social stigma surrounding the idea of “what disabled looks like” can be eliminated and individuals suffering from invisible disabilities can be get all the proper assistance and not be judged by appearance.