BY JOSEPH KAZAZIAN
My sister and I were born on the same day, one minute apart. Being twins has always given us a unique bond that people find very entertaining. “The twin thing” is definitely real. So real, that on one occasion my mom witnessed us get up and open the window blinds in our respective rooms at the same time, with zero communication, and in the exact same manner.
Growing up for the both of us was very different.
When my sister was mere months old, the doctors said that she wouldn’t see, walk, or speak. On the other hand, I was able-bodied, inquisitive, and the prototypical big brother. From my early life, I have some memories, but I’ve also heard stories about how we were. One of the things I remember was that my sister used my long, curly hair to pull herself up, because it was one of the few ways that she could re-position herself. She had very little motor skills and strength in her body. Since then, I always claim that anyone can pull my hair and I won’t feel a thing.
Another story my mom told me, not long ago, was that I was a 2 year old singing and entertaining my family, while a Harout Pamboukjian song was playing in the background. I allegedly stopped singing and ran to my sister. Everyone thought that I was trying to harm her, or something to that effect. So, they rushed to stop me. I asked “why can’t she sing and dance with me, too?” Apparently a room full of adults broke out into tears, because that was my likely my first true reckoning that we were different.
A few years later, both my sister and I began to go to Rose and Alex Pilibos Armenian School. She started a year after I did. By then, she began to walk, which was the biggest miracle in our lives. She also began to speak, and started reciting Armenian poems that I would struggle to memorize. We were five years old. That year, she was pushed to the ground on three separate occasions, with all three resulting in bloody injuries to her face. Children can be brutal, but you can’t blame them for not understanding somebody’s disabilities. The reminders are still visible, as she still has those scars. Soon, it was clear that she couldn’t continue in that school environment and needed to be placed in special education, where she excelled.
In our teenage years, the bullying did not stop. She was bullied for the way she was, while I was reminded of her disabilities by people at school and elsewhere. That’s when I really began to develop a thick skin and compassion for those who were bullied against. Hell, it probably put me on my path as an activist and an advocate.
In her adulthood, she’s blossomed into quite the artist. For someone who can’t see two feet in front of her, she does amazing things: illustrates, does graphic design, acts, directs, and produces films. I recently saw her latest work: a self portrait of what she thinks she looks like. But even in her adulthood, attitudes about her have not changed. Unfortunately, she’s stared at, talked about in a negative light, and perceived as someone who is “spoiled”, “manipulative”, and “able to change her behavior if she wanted to.”
The saddest part? It is exclusively said by some people who are in our community; you know, the same community who faced annihilation due to intolerance. Unfortunately her disabilities are viewed as her being “sick.” Due to her understanding of her disabilities and her true limitations, there are serious emotional, psychological, cognitive and developmental issues that have followed. She often laments that she was born. More than once, I’ve heard things like “I don’t want to live anymore. Everything is my fault.”
Luckily, I have a very strong family who accepts her, helps her, and loves her unconditionally. Despite her struggles and her emotions, she’s a jolly and happy person who loves everyone around her. But she is sensitive enough to feel the pain and disregard from others, and understandably so, she lashes out from time to time.
Laws and Numbers
In the United States, we have come a long way; from passing laws that protect the disabled such as the Americans with Disabilities Act and the Individuals with Disabilities Education Act. These laws protect and promote people with disabilities, so that they may never be discriminated or segregated for conditions entirely outside of their control. As a third-year law student, I’ve had the opportunities to learn and see how these laws function at the University of La Verne College of Law, which has its very own Disability Rights Legal Center.
While there are no official statistics about Armenians with disabilities worldwide, there are some statistics that come from Armenia. Government and Non-governmental sources indicate that about 7 to 15 percent of individuals in Armenia are afflicted by some sort of disability. Today’s Armenia is a signatory of many of the international conventions that are similar in substance and function to the laws we have in the US. By 2025, Armenia will have special education programs for the disabled within the confines of regular public schools, according to Human Rights Watch.
However, if we harken back to the Soviet Era, segregation was the name of the game. Families were encouraged to place their disabled children in orphanages. Children with disabilities were often misunderstood, and their families bore the shame of having a disabled child. This attitude, very unfortunately, manifested itself within the people. Even to this day, left-handedness is still frowned upon. Left-handedness. Some of the greatest leaders and thinkers in the world have been left-handed.
Being the Sibling of a Disabled Person
A lot of what I have seen in my life has been an outgrowth of that shame that others feel righteous enough to feel in my place. Not once in my entire life, however, has a person asked me what I feel about having a disabled sibling. People just make assumptions: that as the able bodied child, I’ve been neglected; that having personal relationships will be difficult because of my “burden.” Others think that life has been unfair to me. Nobody, and I say this with purpose, nobody has the right to assume those things.
I have the most wonderful sibling in the world. She is my first friend. She is my ultimate confidant. She is every ounce of passion in my body. She makes me laugh harder than anyone else can. She’s given me a big heart and wide shoulders. She’s taught me to be patient. She’s taught me to love unconditionally. She’s given me empathy beyond repute, and the ability to put myself in others’ shoes and think about what they might be going through. I’ve learned to love, and I’ve learned to fight because of her.
Everyone should always bear in mind that a massive amount of people have disabilities. Some are obvious and some are hidden. As humans, we owe a great debt to one another of being accepting and adapting to people who are different from us. Disabled people are special people; in that they have to adapt to our world. Modern science has made it possible to treat some disabilities and help disabled people adapt to our surroundings. It’s only fundamentally fair that we adapt to others. As Armenians, we may even have a greater responsibility to those who are unprotected. After all, we were once and in some cases continue to be outcast by greater forces, and what purpose does it serve when we segregate and ostracize our own because of conditions for which they had absolutely no choice?
Furthermore, empathize with families that have people with disabilities. The amount of sacrifice and attention that it takes to have a disabled family member is gargantuan. Sometimes that means that a disabled person, in the case of my situation, may not be able to do the basic, day to day functions that we are all accustomed to do alone: crossing the street, adequately using the restroom, even the ability to see what food is available to cook or eat, the ability to open a water bottle or a can of coke… That list is exhausting.
Disabled people have different strengths than we do. Siblings of special people don’t see the disabilities, because we understand our relationship to them. We know what it is we do.
Շատ համակրելի յօդուած մըն է:
Հաճոյքով կարդացի եւ շատ բաներ սորվեցայ:
Կը գնահատեմ ճաշակը գրողին եւ գրութեան տեղ տուողին:
Good article, Thanks.
Thank you for sharing and bringing to our attention an issue that needs our attention.
Having a disability has nothing to do with who you are as a human being. Most Armenians, knowing that there’s only so many of us left on this earth to begin with, actually have the utmost respect for disabled individuals, regardless of whether the disability happens to be mental or physical. When someone basically has to get through an extra hoop to get through an obstacle, now that’s a true accomplishment!
However, in my experience as a Behavior Interventionist, the closest persons to those with special needs, such as the parents and siblings of these individuals, simply disable them even more, especially when it comes to Armenians… It seems as though the disability of their loved one somehow becomes an excuse used to manipulate the person in front of them. It’s almost as if there’s this constant need for others to feel sorry for the disabled person, and even more so, for them, because they have to aid in taking care of that person.
If someone is already limited in their abilities, and, more importantly, is aware of those limits, why would you want to make them feel less whole in any way? Instead of treating that individual like a regular human being, many of the families of disabled individuals not only see their loved ones as “different”, but also expect others to see them in the same regard. Issues mostly start within the household, and this case, regarding how a disabled Armenian person is interpreted in the public eye, is largely no different.
Suggesting that a disabled person is somehow more disabled because of the behavior of others is not what I am proposing. I commend you for your work as a behavior interventionist, and that’s maybe a subject I’m ill-suited to discuss. However, the fact remains that the stigma that families with disabilities and disabled people have to deal with is an entriely different creature. I’m speaking from my experience as an adult who has a disabled sibling, and have never once used my sibling’s disability as a crutch or as some sort of bargaining chip to manipulate. To suggest that disabled people deserve care does not equate to manipulating others. In fact, it’s often families who are manipulated and gaslighted by others into thinking its wrong for them to help their family member.
It’s an interesting perspective you provide, but it doesn’t change the fact that lives are affected, both in our community and in others.
Thanks for your article and for your reply. Awareness is extremely important with this matter. I thank you for your appreciation of my line of work as well. I would also like to clarify that I’m not suggesting that a disabled person is more disabled because of the behavior of others, and I’m not diminishing the stigma that families with disabilities and disabled people have to deal with. I agree, to suggest that disabled people deserve care does not equate to manipulating others. What I am suggesting based on the experiences I’ve had with work (I work with disabled children and adults) is that a reason families may feel gaslighted by others into thinking it’s wrong for them to help their family member like you said, could be because they may be too emotionally invested to see another perspective.
It’s not a matter of using the disability as some sort of bargaining chip by the disabled person or the family member. It’s more that someone who is less emotionally invested into the situation may see things in a different perspective that the family doesn’t see based on their naturally fierce connection. Lives are very much affected in many ways when there is a disabled individual in the household, and both my initial comment and this one were just some possible reasoning based on my work experience. Please also keep in mind that each family is considered an individual case although we often see similarities based on societal and cultural norms. I wish the best of luck to you, your sister, and your family!
P.S. Please let me know if you would feel comfortable in my using this article for my graduate research.