Sunday, January 7, 2018

One Size does not fit all when it comes to Supporting Autism and other developmental conditions

"One size does not fit all" is a phrase that is consistently tossed around in the special needs community.   People with autism and other disabilities vary in terms of characteristics, strengths, challenges and personality traits.  Yet the programs, supports and services that cater to children and adults with autism (and other conditions) tend to take a "one size fits all" model.  Some examples of program models that take on this standardized approach are group homes, social skills groups etc.  These programs are designed based on "deficits" and not designed from the needs and wants of the individual in mind.   This goes against the "spectrum" model of autism.

The problem with one size fits all programs is that it only effectively serves a few but not everyone.  These programs are not designed around the person's wants or needs.  Instead they are designed for the convenience of those who run the programs or distribute the services.  A lot of programs don't even consult with the population that they intend to serve but instead rely on the insights from  professionals, parents and researchers.  They also rely on "evidence based practices" when designing  programs and services for developmentally disabled individuals.  Don't get me wrong, these perspectives are important when designing services and interventions for individuals on the spectrum.  It becomes problematic when they are the only ones consulted  and apply their insights  to the experiences of all individuals on the spectrum.  Parents and professionals have limited knowledge of what autistic people (or other conditions) actually want or need.  This is why it is important to consult with autistics (or other disabled individuals) when designing support services for individuals with developmental disabilities.    It is a big reason why outcomes continue to be poor for people with autism and others with developmental disabilities.

In my experience  transitioning out from the school system into adult services, I was disappointed in the options that were available to adults.  This was evident in the day programs that my mom and I checked out in which people of different ages and abilities were all clustered together doing the same program. Another example of the "one size fits all" mode in action was when we checked out a postsecondary transition program that aims to help young adults with disabilities learn independent living skills a few years back.  The problem with the program was that there were "mandatory classes" that I had to take during the day which made me pursue my studies at a later time which was an inconvenient for me .    Another issue with the program was that they had a jam packed schedule for each of the clients.  There was always an activity scheduled from the morning all the way up to the evening.  I am the type of person who needs down time in between activities that demand a lot from me.  My sensory issues as well as how I process my environment make keeping a dense packed schedule overwhelming.  This leads me to my next point in this post about the lack of choice and control.

Perhaps the most problematic element of "one size fits all" program models is the lack of choice and control that characterizes most of these programs.  In the transition program I described above, I had to take "mandatory classes" on social skills and sexuality even though I've already been taught a lot of social skills and I was not interested in pursuing a romantic relationship.  To me, this would be a waste of time.  Another all too common scenario is people living in group homes not being able to choose their roommates, support staff as well as when they can eat, sleep etc.  I love to have control of all those things like choosing who I live with and who will support me.  People with developmental disabilities have their own preferences, needs, goals etc. that programs need to honor.  For example, one person might  do well in a group setting while another person might be more introverted and does better in a 1:1 ratio.  In programs and service designs that utilize a more standardized model, one person might get their needs and wants met but another person might not get the right type of help.   This is why most individuals with autism and other related conditions continue to have poor outcomes and are dissatisfied with the current options that exist. 

The good news is that we are in a paradigm shift in designing services and supports with the needs of individuals with autism and other developmental disabilities in mind.  There is a federal push that housing and other support services should be integrated and centered around individual needs.  I also wrote an earlier post on the California Self Determination law and how it brings back control  of state funded supports back to clients and their families.  Both these service designs recognize the extreme variability of individuals with autism and other disabilities and also gives them a sense of agency in designing their services and supports.  Adults without disabilities are able to make choices to shape their own lives so why shouldn't adults with developmental disabilities be allowed to make choices (that are appropriate to their level and with support from others) that can lead them to live more productive and fulfilling lives.    I am lucky that I was empowered to to live a self determined life by learning self advocacy skills to tell people my needs and wants and my family honored my choices and preferences. Some individuals with disabilities are not as fortunate to learn about self determination and to be empowered to make choices for themselves.   The federal push to make services and supports for individuals with disabilities more individualized and person centered sees the individual with a disability as a human being first before the diagnosis. 

Monday, December 4, 2017

On Recovery and "Optimal Outcome"

In 2014, a New York Times article was published about children who have recovered from autism.  I know this article was written three years ago but still is relatively recent given that we only just recently started giving more attention to autism acceptance .   It is sad that a majority of mainstream media outlets like The New York Times can't preach acceptance and neurodiversity.    The emphasis on "recovery" implies the prevailing medical model on autism as some sort of disease.  It dismisses the fact that autism is a lifelong condition that will require supports and accommodations for each life stage.  The media's attention on autism recovery is a dangerous road to go down and can have some detrimental consequences for actual autistic people particularly for adults on the spectrum.  With that said, I will write about why the notion of an "optimal outcome" and "recovery" are destructive to the autistic population.

First, let's talk about what an "optimal outcome" is.    In the eyes of the neurotypical society, an "optimal outcome" is defined as an autistic person who can assimilate and achieve "normal" milestones such as having friends, going to college, living independently etc.   But are those on the spectrum that are described as having an "optimal outcome" necessarily happy and satisfied than those who are more significantly impacted by their autism?  Keep in mind that what is defined as an "optimal outcome" is based on deeply ableist notions of success.   In fact even those labeled as "recovered" from autism still struggle with various learning and mental issues.   What many experts and parents may not realize when they say a child has "recover" from autism is that they may be "camouflaging" or that they have learned various coping and social skills to blend into society.  However many don't understand the amount of energy it takes to have this persona of being normal and the toll it takes on our mental health

I am one of those on the "spectrum" that might be labeled by others as achieving the "optimal outcome" because I have learned so  much coping skills as a result of therapy to be able to pass in society.  In a brief encounter with me, you might even think that I "recovered" from having autism.  However, as I have written in my previous post, I struggle with constant anxiety and self doubt as a result of  learning early on that the only way to be truly accepted is that I fake "neurotypical"  In fact, at the end of each day after work, I feel exhausted from putting on this persona that on the weekends I feel the need for some downtime to recharge my energy.  In sum, while faking "neurotypical" enabled me to accomplish life goals such as getting through college and holding a full time job, the cost of that is the constant anxiety and the fear that  people will be dismissive of the fact when you need supports and accommodations.

Another major consequence on the focus of "recovery" of autism and the emphasis of an "optimal outcome" is that it allows some opportunistic service providers who practice behavioral modification strategies  to pray on the hope and desperation of families of newly diagnosed children.  Often these therapies such as ABA or Discrete child training often require a grueling schedule of 40 hours of week and is a big time commitment for parents.  This can be expensive for a lot of families which can require them to take out a loan in some cases.  The intrusiveness of this therapy regime may not be good for small autistic children who often need large amounts of downtime.  There are many other options that are less intrusive, demanding and compliance based.  There are options like floortime/DIR teaching, music therapy as well as ordinary occupational therapy, music therapy or speech therapy.  Expecting autistic children to carry on a 40-hour a week schedule is unrealistic and denies them from having a childhood as well as being disruptive to the family unit. 

A third consequence is that the strong emphasis on recovery and early intervention is that it diverts attention on to the needs of autistic adults.  As we are well aware, there is a crisis in adequate supports and services for adults.  This is because it is assumed that if autism is treated intensively in childhood, they wouldn't require intensive supports when they reach adulthood.  As a result we have less knowledge of what kind of supports and challenges that adults with autism face,  It also hurts autistics who were diagnosed as adults since there is very little that could help them.  Autism is a lifelong condition and we don't ever outgrow it.

It is ableist to emphasize "optimal outcomes" and "recovery" for autistic individuals.  Having autism is deep within our genes which means it is part of the person.  We need to stop defining self worth for autistics of how much they can do for ourselves or how many milestones we achieved.  If there was a cure for autism, I would not take it because I feel that it would mean taking a part of my identity away from me.  The reason why people with autism and other disabilities were placed on this earth is because we are here to teach society that there is more than one way to live a great quality life. 

Sunday, November 19, 2017

Mental Health and Autism: Why Acceptance is important

It is well known that individuals on the autism spectrum are likely to have comorbid mental health issues such as depression and anxiety.  However, it is a less discussed topic surrounding autism compared to behavior and social challenges etc.  As an autistic young adult with anxiety,  I can give some insight on the high prevalence.  A big part of it has to do with how we were slowly socialized either implicitly or explicitly that an autistic lifestyle is something that is defective and therefore it needs fixing.  In fact this article sums up the strong link of autism acceptance and the development of mental health disorders.  In other words, lack of acceptance externally from others and internally from the self significantly predicts depression and anxiety in young adults with autism.  However, mental health and having a positive relationship with an autistic identity are not a priority when helping autistic people.  If mental health issues are mentioned in regards to autism, they are are addressed in a pathological way.  In this post I am going to write about my experience as someone on the spectrum that lives with mental health issues.

I have written about my struggle with anxiety in an earlier post.   However, in that post I talked about some of the symptoms of how my anxiety  manifests.   I never written that extensively about  the root cause of  my mental turmoil  being related as lack of acceptance of being autistic.   Although I come across as a "confident self advocate"  when I speak about my life experiences, the truth is that I struggle with deep self confidence issues and actually doubt some of my own advice that I give out sometimes.  There is a monster voice in my head that constantly tells me that "I am wrong" or that "I am not deserving of support"  and other negative scripts.  I constantly say "I'm sorry" to my family or others whenever I feel that my autistic mind takes over.  My monster voice is always constantly bringing me down by saying that I am not "entitled to my feelings because I am autistic" and battles with my positive voice or the voice of confidence.  I am so hard on myself and I blame myself for all the challenges that life brings me.

Lately, I have been wondering of how did I become this way or how did I develop such negative thinking which resembles mental self injury.  I then realize that the negative scripts and inner anxiety that I developed in my head today were the result  of years  of growing up and slowly realizing that disability is something that needed to be fixed.  Unlike the children growing up today with the neurodiversity framework, I did not come of age in which autistic advocates were respectfully regarded as the "true experts."   As much as I hate to blast some of my lovely support people like my therapist or my family members on this blog post, they unintentionally through no fault of their own, contributed to my negative script that I have for myself.    Before I go ahead and critique some of the intervention that I received,   I want to make clear that I am thankful that I have gotten interventions that enabled me get to the point where I am today.  The social skills, emotional and self advocacy skills that I learned during my adolescence enabled me to be the strong advocate I am today.  But for autism intervention, there is always room for improvement. 

Throughout my school years, I was taught to camouflage my symptoms in order to blend in and function in the mainstream environment.  It was reinforced through behavioral therapy and the school system.    A few examples that I can remember was that I was pressured to join clubs and sit with a group of kids because that is how typical high schoolers socialized.  I was discouraged from socializing with adults such as the other aides at school or the computer teacher in middle school because it wasn't considered appropriate. I was socialized to learn about  the fashion and other interests that teens through social groups that my behaviorist made (e.g. the "cool" or "not cool" chart) in an attempt were to make me "fit in" better.  All these experiences and others have taught me that I should camouflage and suppress my natural self because I should appear normal.   Friends were chosen for me because people wanted me to be more social. I went along with the recommendations of my support people and parents and pretended to live as a neurotypical because I thought they knew best.  I tried all I can to suppress my natural way of being at the expense of my self esteem and acceptance of my unique neurology.

What the people who helped me didn't realize at the time was the future implications of my mental health as an autistic person.  At the time, the focus  was making me as self sufficient  and socially adjusted as possible by the time I reached adulthood that nobody ever considered what they were doing could unintentionally  affect my self identity and self esteem.  All this energy camouflaging myself in order to appear " normal" became mentally exhausting.  I started second guessing myself and internally beating myself up  over minor social infractions.  This is a big part of my anxiety living as an autistic person.

My experience with special education and ABA shows the dichotomy of interventions that are designed to optimize the quality of life individuals on the spectrum can also adversely impact  the mental health and self acceptance of an autistic identity.    This is what a lot of self advocates are concerned about behavioral modification programs because of the long term affects it can have on mental health in regards to autism.  This is why we need to preach autism acceptance and center self advocates in developing appropriate supports for autistic people.  That means we need to take their insights, feelings and desires into account instead of dismissing them. Acceptance means training mental health service providers to look at autism and other disabilities as a part of a person's identity rather than a problem that needs to be fixed.    Acceptance means a world where autistic people don't have to camouflage to appear neurotypical.  Acceptance also  means giving supports and accommodations to autistic people of all abilities and support levels when it's asked.  If  the world becomes more embracing of the autistic lifestyle, I believe the severity of the mental health problems (though not all) that  autistic people have will be lessened.

Thursday, November 2, 2017

A self advocate's response to the divide between autistic adults and parents at a recent Government Committee meeting

This is a opinion/personal response to this recent article on NOS magazine  on the adversarial exchange that took place between autistic self advocates and parents of autistic children at a recent Interagency Autism Coordinating Committee  meeting which is a governmental body that sets the direction on autism research.    The clash between autistic adults and parents at this meeting is a reminder of the ongoing divide that continues to exist in our community.  From reading this article, I am saddened that there are some parents in our community that can't fathom the idea of  self advocacy or the idea that autistic people can attend and sit on committees and offer their opinions .  I know I am biased from writing this post since I am writing from the perspective of a self advocate, but I want to offer my two cents at the outrageousness of this meeting and the direction the Interagency Autism Coordinating Committee.  I also want to highlight some of the postives like how self advocates John Elder Robison and Sam Crane and nonautistic researcher Edlyn Pena  came up with excellent responses and defended neurodiversity and its principles of rights and humanity for all autistics.

I am outraged that a prominent governmental agency would allow autism warrior parents such as Jill Escher and Alison Singer to continue to discount the voices of autistic adults like myself.   Both of these women are known to hold anti-neurodiverse sentiments on autism and think that the only legitimate autism cases  are only those who are nonverbal and have significant support needs.    For instance,  Escher made a controversial autism matrix this past April that reinforces functioning labels while Singer made a disturbing comment on camera of  committing a murder suicide with her high support autistic daughter in earshot of her comment.  Despite the controversial histories of these mothers, they continue to hold high positions as executive directors for various autism organizations.  Perhaps what is even more reprehensible, is that Escher and Singer continue to make assumptions about autistic ability and support needs.   They believe that autistic people who can sit in a meeting and speak their opinions must not have medical problems such as epilepsy and G.I. issues or not need support etc.  Both Escher and Singer also assume that those with "intense support needs" also have co-occuring intellectual disabilities and therefore cannot understand the logistics of an official governmental meeting discussing research priorities.  These autism warrior moms think they are advocating for the good of autistic people but in reality I feel they are furthering their own selfish agendas. 

On the positive side, I applaud self advocates John Elder Robison and Sam Crane for defending the autistic population and to try to establish unity with autism parents.    The humility of Robison's comment about the duty he and other self advocates on the board of the IACC have to ensure that autistics of varying levels of support have the chance to live a great quality of life.  Of all the "high profile" self advocates out there, I admire John Elder Robison because he doesn't attempt to represent only one side of the spectrum (which is a common among those diagnosed with "Aspergers") and actually cares about autistics who are significantly more impacted  than he is.  When we do autism advocacy, we  often consider the whole entire spectrum which includes those who are nonverbal and requires significant supports in order to live in the community.  This is also what Sam Crane said about the need to presume competence in those who can't speak verbally and giving them a seat at the table at policy meetings.  Self advocates exist because we believe that all autistic people of all abilities are deserving of  rights and supports that will optimize their quality of life. Support shouldn't be a luxury available to only a select few but a necessity for all individuals on the autistic spectrum. This is a standard that I attempt to live by whenever I advocate for autism.

Another positive thing that came out from this meeting is from autism researcher Edlyn Pena from Cal Lutheran University.   She made two excellent points about diversifying the board of the IACC. She advocated that we need more autistics who type to communicate to be on the board of the IACC because they are underrepresented in all autism conversations.  She also made a comment of getting more autistic voices of color on the board, since autistic people of color and their families are relatively absent on boards of autism and other disability organizations.  As a person of color on the autism spectrum, I applaud Pena's statement since she is one of the few that is keenly aware of the lack of racial diversity in the autism community.

The relative absence of self advocates (only three out of the 31 board members are autistic) on the board on prominent governmental boards such as the IACC that affect research priorities shows why autism research does not align with the interests and desires of autistic people.  It is still sad that parents who have bigoted views on autism are still permitted to express them which causes a division for our whole community.  I am not saying parent involvement in the autism advocacy movement is not important but it should be secondary and alongside autistic self advocates.  We need more advocates from different backgrounds, abilities and support levels to be on boards on prominent autism organizations to offer their opinions about policy issues that affect our day to day lives.  There is the saying among autistic self advocates that "nothing about us without us."

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.

Sunday, October 8, 2017

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.

Sunday, September 24, 2017

My Graham Cassidy letter

Here is the letter/testimony I sent via email regarding the latest attempt by congress to cut medicaid funding called the Graham-Cassidy bill.  If passed, this bill can have devastating impacts on the lives of millions of Americans especially those with prexisting conditions.

 To whom it may concern,

I am a 25 year old who lives an autism spectrum disorder.  My passion is to advocate for those with autism and other disabilities and to spread awareness of issues that affect the disability community in general.   As an American who lives with a disability, I am deeply concerned about this recent bill which attempts to cut Medicaid funding.  These cuts can significantly affect the quality of life for people like myself  because we wouldn’t be able have the supports and accommodations we need to live in the community as well as getting appropriate medical and mental health care.  

Growing up, I benefitted from services and therapies such as early intervention that enabled me to achieve a lot of things like going to college, getting a job etc.   In addition, I am also a client of regional center services in California and utilized variety of the services that enabled me to get a job.  Even though I have achieved a lot, I still need support in my daily life and will eventually rely on Medicaid funds for health care as well as for housing and support on living on my own.  If the Graham-Cassidy act is passed, it would make it harder for me to access the support I need in order to make the next big step on living on my own a smooth one.  In addition, I will be 26 next year and will no longer fall under my parents’ health insurance so Medicaid funding will be crucial for me to continue to have adequate access to good healthcare.   If there are drastic cuts to Medicaid, it would be hard to imagine a great future for myself and to know that there is a safety network in place for me .   

The Graham Cassidy act and drastic cuts to Medicaid would get rid of the safety net for me and a lot of people with disabilities who rely on government funding.  Medicaid is a big  resource for regional center system here in California.  These cuts that are being proposed by the Graham Cassidy  could drastically affect programs s such as supported Living and employment as well as respite and other key services that people with developmental disabilities and their families rely on.   Families will not be able to afford key therapies that can improve the quality of life for their children if insurance doesn’t cover the cost of early intervention services. I am not writing this letter just for myself, but on behalf of those with disabilities and other preexisting conditions who are afraid to speak out.  Some people will not be able to survive without Medicaid funding since Insurance companies can charge a higher premium or refuse coverage for  those with preexisting conditions.   I do believe there needs to be reforms to Medicaid services but the Graham Cassidy bill is not the solution since it will make life harder for people with disabilities.