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 children; or 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.

Why I relate to the tv show Speechless as someone with Autism

I recently wrote about the lack of realistic portrayals of autistic characters in the media   This post will be about a t.v. show that does it right in painting a real and honest story of disability.  I know I'm a year late to write this review of the television sitcom on ABC called Speechless.     Even before the t.v. show launched last year, I was excited to watch Speechless because it would be the first show to consult with the disability community and cast an actual actor with cerebral palsy.   For those who are unfamiliar with Speechless, it is taken from the viewpoint of a 16 year old teen boy with cerebral palsy named J.J. Dimeo who uses an electric wheelchair to get around and communicates through a letterboard that is attached to his chair.  His family of five moved to a small dilapidated house in an affluent Orange County suburb so he can be mainstreamed in a public school for the first time with an aide. When the aide chosen by the school district was not a fit for J.J., he decides to ask the school janitor to be his support person at school.  The show comically explores the ignorance most people have towards disabled individuals like J.J., family dynamics especially when it comes to J.J.'s two younger siblings as well as their domineering mother to self determination in which J.J's mother learns to stand back and let her son make some decisions for himself.  When watching the first season, I was shocked about how much I was able to relate to the main character J.J. Dimeo even though I have autism and my disability is not as physically involved like J.J.  I have watched so many shows featuring a character with autism and I felt that for the first time I was glad to finally find a t.v. show I can relate to that paint's a more realistic portrait of living with a disability without it being overly dramatic or the main character's disability is the butt of all jokes in which the audience is made to laugh.  I will now discuss some of the elements of how I relate to the television sitcom.

The first part I can relate to J.J. the main character was his relationship with his aide or support person.  Usually the subject of aides and support people are not discussed in t.v. shows or movies about disabled people.  It was nice to see J.J. bond with his aide Kenneth in the show and how he was able to select him as his support person when the first aide assigned to work with him did not turn out well in the pilot episode.  In my own experience, I always felt close to my support people whether it was my 1:1 aide in high school or my paid mentor/companion.  Although I do have friends, the complex nature and the often inconsistency that occurs in friendships can be overwhelming.   With support people, I don't feel that pressure and demand and the consistent nature of the relationship gives me the assurance that I will receive the emotional support on a regular basis.   In addition to providing a security blanket, the people who worked with me served as mentors/guiding figures.  It was so nice to have additional role models that I can turn to besides my parents.  Kenneth serves the same exact role to J.J. throughout the show as he helps him navigate the complex world of high school such as friendships, girls, people making fun of his disability etc.  Paid help such as aides are crucial to the lives of disabled people and I always felt that their work is undervalued in our society.  In fact support people can become equivalent to a "best friend" because you spend so much time with them.  It is nice that Speechless highlights their importance and how they serve as comfort to those individuals who struggle to live in an able bodied society.

Another aspect I can relate to Speechless is the subtle forms of ableism that are present both from the student body at J.J.'s school and strangers out in the community. In the beginning, J.J. was greeted by the students at school who threw a diversity carnival in his honor.  Yet, the school was inaccessible for J.J. who uses a wheelchair and the only way he can get into the building was through a garbage ramp.  This angers J.J.'s militant mother who gives a lecture to school officials about accessibility.   Another example in the show which exposes the irony of the students' inclusion friendly attitude was when the school decided to hold a school dance  on campus instead of at the beach because it did not cater to J.J's accessibility needs.  The students then turn from embracing and supporting J.J. to blaming him for ruining their fun.  This scene shows that young people who are "inclusion friendly" can change their attitude when they are asked to accommodate for people with disabilities.  The refusal to accommodate if it causes an inconvenience for people is a common thing that most disabled people deal with in their day to day lives.   Growing up and going through mainstream schooling, I have encountered and picked up on some of those attitudes from my peers.  Although no one ever bullied me, I picked up this unspoken feeling that my peers avoided me because they did not want to deal with my autism.  This was probably due to the fact that  it was obvious of how different I was due to the fact of having an adult with me at all times and my meltdowns that I would have sometime in class.  Even some of my friends in the past made statements that I conisdered to be ableist.  For instance, I used to have a girl friend who thought that having extra help (e.g. 1:1 aide, behavioral therapist) was the reason why I stood out to peers rather than seeing it as an accommodation or a source of comfort.  I felt that it was very ableist for her to make that statement because she was basing her opinions on trying to look normal and appearing "cool" in front of peers.    I like how Speechless explores the hidden agenda of  human beings behind their facade of "inclusion" and diversity.

A third topic that I felt I could relate to in Speechless is J.J.'s strong personality.  Throughout the show, the audience can see that J.J. knows what he wants and sometimes tells his overbearing mother to back off and let him make his own decisions.  He also has a mischevious and sly sense of humor which comes out in his interactions with his siblings, parents and others.  I am like J.J. in that way of knowing what I want. One of my biggest pet peeves is when people use the word "should" with me as if they are telling me that I don't know what I am doing.   I also have a very strong sense of humor and can be sarcastic sometimes.  In fact my dry sense of humor is one of my most well known qualities.  My humor entertained some of the school staff during my middle and high school years.  People think that individuals who live with disabilities are helpless don't have a sense of agency.  However, young people like J.J. and myself are proving that's not the case.  We are perfectly capable of making decisions that affect our lives.   Speechless highlights the importance of self determination for people with disabilities.

In sum, I really liked Speechless.  I see so much of myself in the protagonist.  Unlike other television shows and movies about disability. this show doesn't portray disabled people as burdens or inspirational and rely on stereotypes.    As I said in a previous post, I wished they made a show like Speechless but cast an autistic protagonist.    I can't wait to see what season 2 of Speechless has in store.