Saturday, October 28, 2017

Stop treating DIsabled People as Burdens

This topic has been on my mind lately and I have had a recent conversation with my mom about this very topic.  It is how society views people with disabilities as burdens.   This is evident in media portrayals of how people with disabilities  can be a financial and emotional drain on their caregivers. I wish I can say this societal attitude is a thing of the past given the more talk on acceptance of the disabled.   Unfortunately, this is not the case as there still seems to be that perception in the 21st century.  People with autism are not exempt from this negative societal perception because of our social challenges and our behaviors.    It is from my lens as an autistic person that I will write about some of the negative effects that the "burden" stereotype can contribute to the individual living with a disability.  I am also going to discuss the equity principle in relationships which is an issue that affects autistic people and how it can contribute to the negative societal image about us. 

As I stated before, autistic people are often portrayed as being burdensome and needy.  This is evident in tragic stories of how parents murder their autistic childrenor this autism everyday video  in which parents lament of how autism creates a lot of financial and emotional burden on the family unit.  There  is even an exclusive disorder called called Ongoing Traumatic relationship syndrome or the Cassandra affect which affects neurotypical  significant others or family members which results from the "emotional burden" of living with an individual on the spectrum.      Of course the so-called "autism experts"  capitalized on the plight of parents and others in the autistic person's life and came up with various autism interventions such as ABA and social skills training groups that aim to make autistic people less burdensome.  Even some of the transitional life skill programs that are currently out there for young adults on the spectrum that aim for self sufficency.    All these programs have the end goal of making the individual "less burdensome" to be around. 

The problem with society consistently portraying autistic people (or any disabled person for that matter) as burdens  is that it blames that individual for all their challenges related to their disability.  It misses the fact that since people with autism have different brains, they have limitations that neurotypical people don't have.   To truly understand where I am coming from, imagine that you live in a world that was not built for you.   Social interactions don't come naturally to you, so you have to work twice as hard   to figure out each social situation.  Managing complex emotions is hard, so you have to use extra energy to manage your emotions to get through a work or school day.   Due to sensory issues, your brain feels constantly bombarded by all the information that comes in from the outside world which leads you to feel exhausted.   Executive functioning  doesn't come naturally to you and as a result  you get completely overwhelmed with the daily responsibilities of adult life.   At the end of the day,  you feel exhausted and you lack energy to do other things.  When you have down time, you prefer to spend it alone.  This is what life is like for someone like me every single day.  I have to work extra hard in order to function and meet the demands of  adult life.  Even with all the effort I put in, it still feels like it is never enough to meet the constant social demands of adult life.   So when NT people often complain about the social challenges of a child or adult on the spectrum as being burdensome, they are dismissive of the fact that we don't intentionally mean to be a burden on other people but that we sometimes get overwhelmed living in a world dominated by neurotypicals.

Another problem that I have with the burden stereotype is that it carries a stigma of asking for the support and accommodations that will make life easier for autistic people.  It misses the fact that all human beings are interconnected and that we will depend on someone for certain situations or times in our lives.    Having gone through life, I slowly picked up on the fact that if one is dependent on others for assistance, it is considered burdensome on other people.  An example of where I felt I was a burden was when I registered with the Disability office when I transferred to a four year University.  The lady who was in charge of the center at my college came across as cold and uncaring and viewed me as a "burden."  My experience with the college disability center shows the irony of  institutions and offices that are suppose to provide support services for the disabled often view the population that they serve as "leaches" on the system.     

Even with some of my social relationships, I try not to become a "burden" on them so they will continue to see me as a good friend and a likable person.   This is why I dislike  the equity principle that so often governs relationships.  This principle of equity makes the assumption  that both people in the social relationship give or take at equal levels.   In other words, it assumes that both people in a social relationship are at an even level playing field.   This does not take into account the limitations that one's disability imposes on a person.  The equity principle explains why I try to avoid bringing intimate issues related to my disability  into friendships because I don't want to be perceived as someone who is "too needy" or "attention seeking" ,  I cautiously keep track to make sure that I am giving equally in my share of the deal in the relationship.  Unfortunately, this overwhelms me because it is an extra layer I must think about when navigating social relationships.  It prevents me from feeling comfortable with my own natural autistic self in relationships because I constantly worry that the relationship will be off of its equilibrium. 

In my own experience with the few friendships I managed to make, there were times I picked up the vibe that my friends don't want to be burdened or that they were unwilling to be accommodating if it causes a huge inconvenience to them.  For instance,  one of my friends was referencing another individual  that they personally know who happens to be on the spectrum and was complaining that the girl talks about her disability way too much.  Although she wasn't talking about me specifically, what I took from my friend's comment was that she is not interested in discussing or hearing about the challenges of what I have to go through everyday related to my autism.  She doesn't understand that when you live with a disability (in particular autism), it shapes your worldview and that you have to make adjustments just to get through the day.  It is very hard to find people where I don't have to worry about me  being a burden on them.    There are very few people in my life where I don't have that feeling and can naturally be myself.  This is why I am very selective of the people of who I let into my inner circle.   The consequence of being very selective is that it leads me to have a very small social circle . 

The feeling of being a burden on other people can have some very negative consequences for people with autism and other disabilities.  In this study conducted by Coventry University, one of the factors that lead to higher suicide rates in autistic people was the fact they felt like they were a burden on others.    I feel that this is sad that some individuals feel the need to take their own life because they feel that the people in their own life feel they are an "emotional drain.    This study also cast light on hoe autistic people spend their daily lives trying to emulate a neurotypical social relationships to the point that it leads to the deteoriation of the emotional state and self worth.    My striving to meet neurotypical social expectations is the reason for my constant anxiety in which my adrenal glands are constantly on over drive.  The stress as a result of an overactive nervous system has made me have some G.I. issues like constant bloating and constipation.    I'm sorry I got a little too personal on my last sentence, but I want to portray some of the emotional and physical toll that the body has taken from working extra hard to be a functional member in society.

To conclude this post, we as a society need to stop portraying people with disabilities as burdens.    My mother has given me the best advice in that everyone is interconnected and that we are all dependent on other people.  We need to emphasize support and accommodations that will alleviate the stress of living with a disability.  Lastly, we need to teach neurotypical people to be more compassionate and empathetic towards those with disabilities.  This will help them understand that we don't mean to be burdens and that there are going to be times that we are going to be more dependent on them then they are to us.  We are doing the best that we can but sometimes we get overwhelmed with life.   I believe that every human being is deserving of acceptance and compassion in this world and those two principles shouldapply to everyone rather than a select few.

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