The Disability Paradox

I have a total of 11 scars on my body. Soon to be twelve. I have had 8 surgeries soon to be 9. That is to say nothing of the mental scars that have accompanied the physical, but that is a different oratory for a different competition. Scars come in all different shapes, all different sizes. The reality is, we are all broken. We are all scarred. Scarred from sports and from broken relationships, scarred from hospitals and scalpels. This may seem intuitive but so many people fail to see the commonality of our scars. I have spent a long time contemplating and coming to grips with my own scars.

I have been scarred rolling into class on the first day of third grade in a wheelchair, with a neck brace and a full leg cast. I have been scarred by words despite being told they could not hurt me. I have been scarred equally by pity and that tone people adopt when they know you are beneath them. I have Multiple Hereditary Exostoses, which has resulted in my physical scars, but I think the ones I have just described to you hurt more. My surgeries were necessary, but most of my scars are not. Most of my scars are a result of the way people view those of us who are disabled, and the way they treat us.

According to the University of Illinois at Chicago, School of Public Health, 54.3% of the respondents with moderate to severe disabilities reported having an excellent or good quality of life, confirming the existence of what is called the disability paradox. One of the most prominent issues weighing down the disabled is the judgment that they receive, the stain that the able-bodied community imprints on them. We need to address the disability paradox in order to transform needless pity into something more productive. First, we need to examine the disability paradox and why it is so counterintuitive. Next, we need to examine the consequences that arise when people do not understand the paradox, before finally realizing that disabilities and abilities are opposite sides of the same coin and hopefully alter our perspective.

They have just as fulfilling a life as they enable. The only trick is to live your best life, and when you are disabled, that is all you strive to do. Now I know that sounds cringe-worthy, but it is very true. As soon as you start feeling like you are in a nightmare you cannot get out of, you start to make your feelings seem like your reality. Staying positive and embracing your disability will teach others, as well as yourself, that you can do anything, as long as you adapt and adjust to your life. But positivity alone is not enough. The paradox exists not because disability makes life unlivable, but because society has created barriers that make it harder than it needs to be. The truth is, it is ableism that oppresses the disabled.

The disability paradox notes that individuals with disabilities experience an excellent quality of life despite the contrary expectations of most able members of society. The disability paradox implies that you, being a non-disabled individual, would pity me. This idea came to mind when Sunaura Taylor, author of Beasts of Burden, points out that “disability is presented as pitiful…while disabled people are patronizingly referred to as ‘inspiring’ and ‘special’ and praised for ‘overcoming their disabilities.’” Further, in her book, she relates and finds similarities between how we view disabled people and animals. Throughout history, disabled people were, and are still considered, as animalistic, unable to function without the aid of a non-disabled individual, unable to think, to comprehend concepts like “normal” people would, unable to be an operable product of society. We have created this stigma around being disabled to where it inherently means being incapable of true happiness or satisfaction.

Far from simply being an academic phenomenon, the disability paradox has real-world consequences for those of us with disabilities and those without. Remember my scars? The physical ones? At age three, I was diagnosed with Multiple Hereditary Exostoses. This is a genetic bone disease or disorder in which benign cartilage capped bone tumors grow outward from the metaphyses. To be honest, I am not even sure what that means. But, in short, I have extra bones in random places throughout my body in sneaky areas that affect my mobility and daily functions. MHE affects 1 in 50,000 people. I am one of the 10% of people with this genetic disease that have this condition as a result of a spontaneous mutation. I am also the first person in my family to be affected.

My first surgery was in third grade, and I have had 8 procedures since then. It is not uncommon for MHE patients to undergo numerous surgical procedures throughout their lives to remove painful or deforming osteochondromas. Surgeries, to be honest, are not as painful as I thought they would be. Going home, however, hurt more than I ever would have imagined and returning to school was agony. You see, sidelong glances hurt a lot more when you are not anesthetized, and people tiptoeing around you is more painful than having stitches removed. The actual consequences of my disability were not debilitating at all. Through numerous hospital and doctor visits, I have been shown exactly where my bumps are located and what to do in an emergency. My teachers and friends are aware of my condition and know how to comfort me when I am in pain. I am quite pleased with my ability to cope with my disease.

I play tennis competitively and go to the gym after a rough day. I jump rope to connect with my inner child. There is a modicum of physical pain associated with each of these, but that does not stop me. And if it does not stop me from acting, it certainly should not change the way I am treated. That hurts. I am ashamed of my disability not because it inhibits me but because it inhibits people’s ability to see any other part of me.

I was terrified about writing this speech. Terrified of the accusation that I was trying to capitalize on my disability. The truth is, I hate telling people about my disability. I do not want it to define me, but I have realized that the only way to accomplish that is to talk about it. To clear up the paradox.

As I entered high school, I began to start a social experiment. I did not mention my bone disease once to my school unless asked. When I was interviewed for positions, I never mentioned my struggles. I had started to see I was not chosen for many opportunities. Amongst my classmates, the people selected for the role were the ones who tell others their struggles or disabilities. As I was more conscious, this situation began to be a pattern. Excellent candidates for positions offered did not get the position because they did not mention their struggles. You start to see that people look at you differently. They see you not as a normal person anymore, but a warrior. How do we change this?

We have to recognize people with disabilities even report the same or a better quality of life as a full-bodied individual. Now we may think that you would be better off dead. Some even do attempt to commit. But as time passes, you realize you can still do the same things, you are just different and more unique. Dr. Narineh Hartoonian mentions the dynamic equilibrium theory, stating that we maintain a stable level of happiness despite the positive or negative changes that take place in our lives. Now I did not believe this was precisely true until I read the last portion of her research. It explains that adaptation and accommodation had a significant influence on the quality of life.

If you think about any situation you have had in your life, good or bad, what did you do to make it seem normal? You adapt to the circumstances, just like if you had a disability. So, in reality, we tend to wrongly assume that individuals with impairments tend to face more misery. However, what you think is misery is their reality. Now, if you do have a disability and you are unhappy, what can you do? Well, I am going to steal this quote from Vince Lombardi. He says, “It is not what we can or cannot do but what we do with what we have that makes the difference.”

Let’s flip the coin. There are two sides to every story. We have the good and the bad. But have you ever heard of the saying “find the good within the bad?” That is what I did. We need to focus on making a difference. I have developed a nonprofit organization, Moving With Maya, for this cause, that the disabled can do anything. I am not expecting for everyone to found a nonprofit, but I would like everyone to look at organizations, disability advocates, and around your community. No pitying. This nonprofit helps me, as well as others, get out of their comfort zone. In this way, I hope to prove the stigma that the disabled are enabled. They can do anything within limits, just like you can. It is a judgment free zone that allows the disabled to feel comfortable in their skin, doing what they need to stay healthy, just like any ordinary person.

We talk about relationships and friends, and food just like you do. We like the same things, we do the same things, we just may look, act, or feel a different way. We talk about how we think, too, with our pain, and we learn to manage it. All the disabled need, just like you, is a friend and someone to talk to.

Although more than half report an excellent quality of life, we cannot ignore the 45 percent of people with disabilities who reported a fair rate of life. Although people do adjust to their condition, we still cannot forget that pain is an issue. Pain is a lonely experience that sometimes you feel as if no one can help you. Losing control over one’s body functions scares the person and reduces their quality of life. If you have been living with your condition your whole life, you do not know another way, and eventually you adapt to the circumstances. If you have developed your condition, you may feel trapped.

A mom of a daughter with the same bone disease as me said her daughter “is lucky because she is not into sport and loves acting and art. Her life has been challenging mainly because her friends did not support her or understood her much. She felt lonely and different, but she became stronger and tougher. She managed to overcome panic attacks, and her life is quite good.” If you try understanding a different reality, maybe you can come to terms with the fact that the disabled life is not so bad.

We focus on the can more than the cannot. Emotions refer to the body, mind, and spirit of yourself. Concentrate on what you can do rather than what you cannot, it allows you to be aware of your accomplishments, and focus on the paradox. But we also have to ask, what creates the paradox in the first place? The answer is access. When accessibility is denied, pity rushes in. When accessibility is expanded, whether that is transportation, captions, classrooms, or workplaces, the paradox dissolves. Disability does not equal inability. Lack of access equals exclusion.

We judge others from the outside. We assume that being disabled automatically means that your life sucks. That you are better off dead. Let us stop assuming. Let us stop pitying, because, hey, I am doing just fine. Let us stop defining what it means and how it feels to be disabled. Let us stop associating disabled with unable. And let us stop trying to fix the disabled. Because what we really need to fix is the ableism that comes with being disabled. What we really need is to find a cure for ableism.

I am disabled. I am not sad. I am not scared. But I am not a hero. I am simply human. And when we cure ableism through accessibility, through advocacy, through attitude, we allow disabled people to be seen as just that, fully human.