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    “No, that was not me playing Chopin in ‘Autism in Love’ ” : The issue with silencing a voice in the context of disability

    November 1st, 2016
    Image description: Two screenshots of me playing on my upright piano at home. This scene takes place around the 26:00-27:00-minute mark of the film. – March 2013 (Courtesy of ‘Autism in Love’)

     

     

    ✨✨✨Please note that commenting on this post has been disabled. There is a tremendous amount of anger and frustration fueled in this post… but I felt compelled to speak up because it is an important issue in regards to the disability community, yet at the same time I do not want to make this about attacking any of the individuals mentioned. Thank you for your understanding.✨✨✨

     

    Music is my native language. Before I developed speech and learned how to write, I communicated through the piano. Sixteen years of formal classical piano training and a B.A. Degree in Music. To this day, the piano remains the vessel where I can best articulate my emotions and feelings.

    So try to imagine how you would feel if you saw a video clip of yourself performing on the piano… only to discover that your playing was replaced by a pre-recorded track of a Chopin Nocturne performed by another pianist…  a piece that you never played before in your life. This is what happened around the 27-minute mark in Autism in Love.

    As you will note in the screenshot below, the screenshot of the credits that show up starting the 1:11:13 mark states that the recorded track was “[Chopin’s] Nocturne #2 in Eb Major performed by Sam Johnides”.

    Image Description: A screenshot of the closing credits around the 1 hour, 11-minute mark. The last section of text in the screen says “Nocturne #2 in Eb Major performed by Sam Johnides.” (Courtesy of ‘Autism in Love’)

     

    After I watched the film for the first time at a private screening, I confronted the director in an effort to understand where he was coming from with making that decision. His explanation was that he did not find my music was appropriate and fitting for their film. He said that he did not think that covering it up with another pianist was a huge deal, and he felt that eventually over time I would get over it.

    Silencing my native language? No, I refuse to “get over it”.

    Since the film’s release, I have lost count of the people who have specifically commented how I “played that Chopin piece beautifully” in the film. A few people even said it made them cry tears of joy. It was humiliating for me to have to respond to every one of these individuals on the truth behind what actually happened.

    When I have shared this story with people, a few have asked me if the decision to cut off my piano was because of audio technical issues picked up during the filming. I am aware that this can be a legitimate reason, so I made sure to specifically ask the filmmakers about this when I initially confronted them. They told me there were no technical audio issues and that was not the reason they made their decision to cut off my playing.

    I should have suspected it was going to happen. One day, while the crew was preparing to do one of the film shoots of me performing on my piano, the director asked me to listen to a track on his music player. It was the exact same recording of the Chopin Nocturne that was used in the film. He asked me curiously if I knew how to play anything like this. I bluntly responded that (although I never learned that particular piece) I had studied Chopin in high school, but I quit classical training during college and now primarily focus on my own compositions.

    Perhaps the filmmakers had positive intention in their decision to do this. I admit I do not know and cannot assume what their intentions were. But how it came across to me was that the action of “dubbing” my performance with another pianist gave the message that my music and my playing is so terrible and that it needed to be covered by a classical pianist who the filmmakers thought was more acceptable. Even if that is not actually true, their action gave off that message.

    It certainly did not help once I learned additional information directly from the pianist. I was able to find a way to contact Sam (the pianist), and he kindly provided me additional information into how he got involved with the film. One of the reasons I contacted the pianist was to make sure the filmmakers had received his permission to use his track (which was done and that is a good thing). What caught me by surprise to learn, however, was that the pianist was contacted about record the Chopin track specifically for the film. As of the date of this posting, he had not seen the documentary, so he was not aware of how the recording had been used.

    While learning that does not help subdue my suspicions of the filmmakers’ intent of “dubbing” my performance, it was insightful and I sincerely appreciate Sam for providing me the information.

    As a person with a disability, I know what it was like to struggle to learn how to speak, learning at school, and making friends. The piano was my one source where I felt confident and proud. That sequence of my playing dubbed by a different pianist playing a different piece was more than disrespectful — it was offensive. It was disrespectful and offensive to any person with a disability who struggle with traditional forms of communication and have to rely on their particular skills (music, art, or otherwise) to communicate their emotions in their most articulate way.

    A courteous note to any filmmaker who considers taking a similar action: It does not matter to me what you really think of my music skills. But next time you hate something, just cut it out altogether. It is easier (and less hurtful) to cut it out than to fake it. While both approaches are disrespectful, it is less disrespectful to take a voice out of the final cut than to suffocate a voice and display it in front of an audience.

     

    ✨✨✨Disclaimer: There are still a lot of positive feelings I have for the documentary as a whole and I still support the film. But like anything else, nothing ever comes out perfect. There were a few issues that came out of my personal experience and I thought it was important to address this particular issue because it is something I hope we all can learn from when we are portraying people with disabilities in the media.✨✨✨

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    Music is My Native Language: Expressions of PosAutivity #AutismPositivity2014

    April 30th, 2014

     

    Image description: A “selfie” (self portrait) of my shadow silhouette sitting down during an improv session with my Steinway upright piano in the Front room of my home, looking out through the kitchen and dining area. The photo was captured at sunset.
    Image description: A “selfie” (self-portrait) of my shadow-cast silhouette. I am sitting down during an improv session with my Steinway upright piano in the Front room of my home, looking out through the kitchen and dining area. The photo was captured at sunset. Photo captured January 2014.

     

    Words are not my native language. Before I was able to communicate with words, I communicated through music.

    Ever since I was a little girl, I knew that music would play an important role in how I define myself:  how I express my desires, emotions and personal identity.

    Around age 4, I began to develop spoken language. Following that, I was enrolled in a few years of speech therapy in an attempt to “catch up” with the language used by my surrounding society. Even as I continued to develop the spoken and written language that my society uses to communicate, I always struggled to fit in.  I was shy, insecure, unsure how to make or keep friends and romantic relations.

    At the age of 6, I began classical training on the piano.  Not long afterward, I began to write and compose my own material.  In fact, I loved it so much that I even pursued a Bachelor of Arts degree specializing in Music Technology, and I still continue to record, produce and perform my work when the time and space allows.

    At any occasion I walk towards a piano on stage at a recital or a show, an unexplainable energy takes over my consciousness. As long as I am up there on that stage playing on that piano, my shyness and insecurity disappears. 

    How to best describe it? A psychological orgasm.

    Music is what gave me my “voice”. The piano serves as my interpreter. The piano has provided me with the ability to translate my emotions far more accurately than I ever could by spoken word or written language.

    With every live performance on stage, my soul transforms into a creature of raw emotion and authenticity. The piano enables me to translate what I am trying to communicate to my audience. When my audience witnesses how I articulate through music performance, they quickly learn that I am a person filled with intensity, sorrow, rage, sexuality, vigor, adventure, and a hint of laughter.

    How to best describe the feeling of connecting to my audience? Euphoria.

    You are my audience. And with the piano, I expose my heart to you through my native language.

     

    Autism Positivity 2014 Flash Blog logo

    This article was written in contribution to the Autism Positivity 2014 Flash Blog. Click here to learn more about The Autism Positivity Project and its various contributors.

     

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    9 Things You Must Include in Sexuality Education for Individuals with ASD

    April 24th, 2013

    Birds eye view by chrisjtse, on Flickr

    Sex education has its flaws.

    I never had an opportunity to take sex ed during my time as a junior high school student. But even if I did, I probably wouldn’t have got anything more than what I was able to learn about sex from sources outside of school.

    It wasn’t that I was denied access to the class. Sex ed was offered during the Seventh Grade and I happened to skip the Seventh Grade (to catch up from repeating kindergarten). However, many students on the autism spectrum have been denied access to a well-rounded and inclusive sex education. Dave (my partner) was denied from taking a marriage & family planning class in high school because the faculty assumed it wouldn’t apply to him… even though he had expressed interest in taking the course.

    I’m sure Dave is looking forward to sending that marriage class instructor a future wedding invitation.

    A well-rounded, inclusive sexuality education for individuals with ASD is essential. Even when parents, professionals and educators are providing that education, some vital components are still left out.  The autism spectrum is extremely diverse, and developing a universal sex education curriculum that would apply to all is no easy task — if that task is even possible.  But regardless of the individual and the way that autism is experienced, there are at least 9 things you must include when developing a sexuality education curriculum for individuals with ASD.

    1.  Personal Perspective

    Without personal perspective insight, developing an effective sex education curriculum for adolescents and adults on the spectrum is impossible.

    How often do we come across a self-advocate presenting a workshop on autism and sexuality? Notice how the majority of these presentations are delivered by a professional?

    The number of workshops and conference presentations on autism and sexuality are gradually increasing. This is a good thing. What remains to be interesting, based on observation, is the ratio of professionals to personal perspectives on that particular topic. How often do we come across a self-advocate or family member presenting a workshop on autism and sexuality? Notice how the majority of these presentations are delivered by a professional? 

    Professional perspectives can be highly valuable. Professionals can offer structure and guidance into building a sex education curriculum. Implementing an appropriate methodology, however, requires a significant contribution by a ‘chorus’ of personal perspectives.

    Research, studies and workshops which are solely professional-based are, in my opinion, quite fascinating.

    2.  Personal Perspective 

    No… this is not a typo. I am actually repeating this one. It is that crucial.

    I once had a presentation proposal on autism and sexuality rejected with the following explanation: “We have an expert and respected professional in the field who submitted a presentation on autism and sexuality issues.. so we’ve got that covered.”

    Totally covered?

    It doesn’t matter as much to me whether my own personal insight is disregarded. What I’m more concerned about is the other individuals’ contributions and insight. Exploring blogs on the Internet, having face-to-face conversations, and attending workshops, we are able to collect a wealth of autistic perspectives on sex education issues. Because the sex education curriculum must be tailored to the autistic individual, it requires that ‘chorus’ of personal accounts of the very individuals who experience sexuality themselves. The larger and diverse the representation, the higher quality education we will be able to deliver to learners on the autism spectrum.

    It is beyond amazing to me how personal perspectives are still not taken as much into serious consideration as they need to be. In reviewing reports, published studies, and a selection of the sex education workshops I have attended, it is evident that the sex education model for students with ASD is still dominantly influenced by the Medical Model of Disability. Very likely, this is not deliberate. It’s just a matter of  shifting the paradigm in how we as a society perceives individuals with disabilities.  Personal perspectives would never allow the Medical Model of Disability to dominate sexuality instruction.

    3.  Inclusion 

    Inclusion of learners who are not sexually active or not interested in sex

    There are still plenty of health care professionals and educators who assume that individuals on the autism spectrum, or any disability, have no interest in sex or will never have sex. While it’s true there are autistic individuals who will never develop an interest in sex, we cannot make this assumption prematurely.

    Even when there are cases when it’s certain an individual will never be sexually active, it is still important to be educated about sex…  especially on experiencing changes during puberty, advocating our rights to personal safety and developing sociolsexual awareness (we will cover more on this later).

    Inclusion of learners who use non-traditional communication methods

    Activism against Gender Violence Campaign Launch by United Nations Photo, on FlickrIt is also crucial to develop lesson plans which includes people who do not speak and do not use a communication device (like my brother, James). People with significant communication issues are more likely to be taken sexual advantage of.

    Also, just because one does not speak does not mean one cannot experience sexual pleasure or have a satisfying sex life.

    One promising past initiative was the Speak Up Project: a 2004 effort based in Canada. This project focused on addressing the needs of people who use AAC systems to access resources and information on sexuality and receive an adequate sexual health education (a type of access that the verbal speaking population takes for granted). As the project beautifully states on their website: “We all have a role to play in supporting AAC users in developing a sense of sexual identity, confidence and dignity.” 

    Inclusion of learners who do not fit the heteronormative assumption

    Formal sexuality education tends to be strictly focused on a heteronormative assumption.  In other words, sex education tends to focus on only two types of individuals: cisgender straight women and cisgender straight men: two ‘complimentary’ genders, according to societal norms. John DeLamater points out in an essay that it “prevents sexual interactions and relationships from moving toward equal contributions, equal responsibility, and equal pleasure” (source: DeLamater: Gender equity in formal sexuality education)

    Although the conversation is starting to include more representation of gay, lesbian and bisexual populations, a sex education which is inclusive of gender-variant, intersex, and transgender populations are lacking. Even between the two fundamentally assumed distinct forms (male and female), there are varying degrees of difference among the millions of people who identify as male or female.

    Sex education needs to include discussions on embracing and acceptance of sexual orientation and gender expression. Those of us who do not identify with gender norms have the same entitlements, protections and sexual rights as any other human being.

    In order to shift out of the heteronormative assumption, we need to be able to identify the social norms (the “unwritten rules” of social behavior) which hinder us.

    Social norms may include things like:

    • Traditional gender roles
    • Heterosexual relationships and marriages
    • Cisgender privileges
    • Males as masculine and females being feminine
    • Society’s definition of beauty
    • Privileges of straight, non-disabled status
    • Able-bodiedness

     

    Please keep in mind: inclusion is just not restricted to the learning environment where the learner is receiving sexuality education. Inclusion is not a place. Inclusion is a philosophy.

     4.  Teaching materials for non-traditional learners


    exótica erótica by días de viaje*, on flickrTextbooks are useful for some learners, and not as useful for others. It’s time to take a more creative approach.

    Here is a condensed list of examples of non textbook-based learning materials:

     6.  Sociosexual awareness

    Having a knowledge of the sociosexual behaviors means having knowledge of the interpersonal aspects of sexuality.  When we are studying sociosexual behavior, we are studying the languages of human social behavior and human sexual behavior.  It involves a thorough observation into the sexual-related social interactions within our surroundings.  The goal of sociosexual awareness is not to force ourselves into conforming to the social norm, but to gain a better understanding of the “hidden agendas” (hidden sexual intentions) so that we can better protect the vulnerabilities we may have.

    In my experience, it is often difficult to recognize when someone is making a move on me, unless the indicators are extremely dramatacized like those “vintage” TV romance flicks. Even if I am hanging out in a bar (a place where a lot of flirting occurs), it has been difficult for me to tell who someone is actually flirting.

     6.  Sex Positivity

    The sex-positive movement is a gradually expanding movement. Even more gradual is the sex-positive movement as it applies to the autism and disability communities.

    Of course it’s important to address sexual safety practices. We definitely need to know how to protect ourselves from STIs / STDs, unwanted pregnancy and sexual assault. But it is also important to know strategies for sexual pleasure. We need to understand there is no guilt or shame involved in wanting sexual pleasure and exploring our own bodies. 

    Expressions of sexuality is not forbidden and evil, but a natural part of the human experience.

     It’s also important to know that it’s okay if we don’t want to get involved  in sexual activity. We’re often expected to enjoy sex. We’re taught to respond appropriately to societal norms in sexual interactions. Truth is, not everyone is interested in having sex and/or romantic relationships. It’s important the learner needs to understand while we have those rights, we should not be forced and it’s okay to not be interested. 

    Sexuality in pop culture can portray unrealistic ideas on what is defined as sexy or beautiful. In the social norm, there is a narrow gap of what is considered sexy or beautiful. While it may be useful to learn to identify the stereotypes of what is defined as sexy or beautiful, we cannot be forced to adhere to these stereotypes.

    It’s important for individuals to know that…

    • Sex is healthy, so long as it is practiced safely and with consent.
    • Not having an interest in sex is perfectly okay.
    • We have the right to refuse any sexual activity we do not want to participate in.
    • We have the right to communicate and be educated about sex in a safe social environment.
    • Expressions of sexuality is not forbidden and evil, but a natural part of the human experience.

    If you need a clearer idea of the sex-positive movement, here are a few links:

    Sex-positive movement (Wikipedia entry) 

    The Language of Sex Positivity by Charlie Glickman | Electronic Journal of Human Sexuality, Volume 3

    8 Ways to be Positive You’re Sex Positive | The Frisky

    7.  Concrete, specific instruction style

    Avoiding euphemisms

    Two Bees, Or Not Two Bees… by drp, on flickrAvoid euphemisms and metaphors if at all possible. Although some of us are able to understand euphemisms, it’s difficult for many of us to get an understanding of the topics at hand. Euphemisms are far too abstract.

    One example of a euphemism is the popular way to describe sexual reproduction: the birds and the bees.  Parents and educators may have the impression that euphemisms are a less intimidating way to teach explicit topics… like sex. Parents and educators also feel it is less intimidating (and more comfortable for them) to approach those topics. As uncomfortable as you may feel, it is best to just stick with the technical terms as this will be an easier way for autistic learners to grasp the topic. Throwing in words like penis and vagina is not going to kill* anyone.

    How did the phrase “the birds and the bees” get incorporated as a way to describe sex, anyways?

    * figurative speech

    Explicit & scientific terminology

    Need we say more?

    Access to educational resources which contain bullet points, lists, visuals, etc.

    Again, self-explanatory.

    Mixture of one-on-one and peer group instruction

    Individuals on the autism spectrum benefit greatly from one-on-one instruction. This includes sex education. It’s also beneficial to include a class of peers learning alongside the individual, especially when participating in role-playing scenarios, demonstrations and discussions. For non-disabled peers, it reinforces understanding in least restrictive environment (LRE) and the importance of including individuals with disabilities in the classroom. Non-disabled peers need to understand that individuals with disabilities have a right to learn about sex, too.

    Candid, clear-cut communication between the instructor and the learner

    In addition to that, establish concrete specifics on when and whom to approach to ask questions or express concern regarding sex and sexuality.

    8.  Safe Learning Environment*

    In a safe learning environment…

    • The learner will always need some extent of control.
    • Instructors need to be approachable, open-minded and receptive.
    • The learning environment accommodates the learner’s sensory wiring.
    • The learning environment is least restrictive.

    Most importantly, learners must feel safe to open up about any questions or concerns they have about sex and not be judged. 

    *A safe learning environment is not to be confused with a sheltered learning environment.

    9.  Shift in perception

    A shift in perception involves one simple thing: deleting the Medical Model of Disability.

    What implications are involved in applying the Medical Model into sex ed? If sexuality instruction is dominated by the Medical Model, it can spark significant negative consequences to the individual. The Medical Model can imply that…

    • All individuals on the spectrum have no interest in sex.
    • All individuals do not have the capability to take in huge topics like sex.
    • All individuals lack empathy.
    • The assumed lack of empathy opens up the possibility that we are more likely to become predators or be extremely naive.*

    *The four bullet points above are examples of  false assumptions people can have on individuals with ASD.

    We are often more capable than we realize — regardless of our learning style, cognitive ability, characteristics and complexity of understanding.

    The concern of applying the Medical Model of Disability into the sex education curriculum is that the learner is perceived as having to be fixed. It suggests the learner has to convert to as much to the social norm as the parameters of their ability allows. This can result in the individual losing their sense of self worth and identity. This can also lead to the individual not understanding the true meaning of consent — that it’s okay to not accept anything they do not want to get involved in. This can apply to both sexual and non-sexual situations.

    Even when there is acknowledgement in existence in sex drive and sexual urges, it may be assumed that autistic individuals lack empathy. This is far from the truth.  

    It’s important for individuals to know that…

    • We are not victims.

    • Plenty of us do experience the same feelings of romance, sexual desires, developing relationships, and raising a family.

    • All labels, classifications, and stereotypes, and conditions are merely labels created by a history of societal norms and were not created naturally.

     The Social-Relational Model and the publication The Sexual Politics of Disability (Shakespeare, Gillespie-Sells & Davies) may have opened up the conversation on shifting sexuality and disability out of the Medical Model and portraying sexuality and disability as a civil rights issue. But we are far from having shifted out of that paradigm.

    In Closing…

    Human Sexuality? by kid_entropy, on flickrAutistic individuals tend to be “hands-on” learners. We learn by exploring into our own capabilities in our own bodies. While our physical makeup do vary, I often find that we are often more capable than we realize — regardless of our learning style, cognitive ability, characteristics and complexity of understanding.

    I am not an educator, but it does not take an educator to know that developing this specialized curriculum is extremely difficult. A friend of mine made a good point that “It would have to be incredibly personalized”. Considering the learning styles, communication styles, sensory wiring and levels of comprehension — how does one develop an effective sex education curriculum for learners on the autism spectrum?

    The sex education curriculum, ideally, would be constructed as a framework. A framework offers ‘spaces’ to fill in the methods of instruction that would be found ideal for the individual’s parameters of learning ability. These ‘spaces’ can be filled in with the help of IEP meetings, caregivers in adult residential programs, intervention specialists who work directly with the learner, and, of course, significant input from individuals on the autism spectrum.

    It may take more time to figure out this process. It’s possible we may not ever reach a point of solidifying a sex education curriculum. But as long as we at least include the components discussed here.. we will at least be on the right track.

    In acquiring a well-rounded inclusive sex education, in however way we learn it, we can become empowered.

     Image credits: chrisjtse, United Nations Photo, días de viaje*, drp, kid_entropy

     

    4 Comments "

    One Photograph to Break My Silence: A Heart-to-Heart Conversation on Autism and Sexual Abuse

    August 28th, 2012
    Photo taken in August 5, 2012 in Arlington, VA by Grace Brown, founder of Project Unbreakable.
    (Click on image to see entire photo) *trigger warning*

    Content and Trigger Warning: The following article contains references to sexual abuse, sexual assault and sexual violence.

    Imagine a deep dark secret… a secret only you or very few other people know… that you have kept locked inside for a significant part of your life. Imagine taking that deep dark secret, and letting it spill into words you write on a blank poster with a Sharpie marker.  Imagine holding up that poster… exposing your secret… with your face in full view in front of a camera… and having that photo of you published for the world to see.

    This is precisely what I did a few weeks ago.

    On the overcast afternoon of August 5th, I participated in a national photography project called Project Unbreakable. Project Unbreakable was founded in October 2011 by 20-year-old college student and aspiring photographer Grace Brown. To quote from the site itself, Grace “works with survivors of sexual assault, photographing them holding a poster with a quote from their attacker.” Some are not necessarily quotes from their attacker. As of this writing, she has photographed nearly 200 people from several U.S. cities and hopes to expand the project internationally.

    How did I get involved in Project Unbreakable?

    I have actually been following this project since earlier this year, and was considering contacting Grace when she scheduled her first photo day in Washington, DC back in March.  However, I never got around to pressing the SEND button after typing my email to her.  Even though I wished I had participated in that shoot, I chose not to sweat it. I simply wasn’t ready to take the leap at that point.

    When the announcement was posted that they were returning to the DC area in August, I jumped at the opportunity.  By then, I was ready to reveal my deep dark secret.

    Capturing the image

    The timing of my appearance in the photo was certainly interesting. Around one week prior, I was lying on an ER hospital bed in San Diego, California after an episode of severe hypoglycemia during a work-related event left me fading in and out of consciousness. (My very first ambulance ride? Check.)  Through stress and lack of sleep, I had not been taking good care of myself.

    At that moment, I felt vulnerable. But it was the rare instance of vulnerability that I had completely consented to. I wasn’t forced to step forward. I chose to step forward. That in itself felt empowering.

    “Surreal” is probably the best way to describe that 15-minute window of meeting Grace, sitting down to write on my poster, modeling the photo session, and expressing my appreciation for the opportunity. The image captures me at an authentic state of exposure, fear, liberation, uncertainty and vulnerability.  At that moment, I felt vulnerable.  But it was the rare instance of vulnerability that I had completely consented to.  I wasn’t forced to step forward.  I chose to step forward.  That in itself felt empowering.

    Emerging from the silence

    A survivor needs to have complete control of when and how to break silence.  A survivor has the right to decide when and where to create their ‘revealing space’.  A survivor needs to determine all this at their own will.

    It may have happened to me over 10 years ago.  But it wasn’t until early Spring 2011 when I decided to confront my past… when I began to suspect what I had experienced was very likely sexual abuse.

    Anorexia, self-injury and a dependence on prescription drugs covered up the guilt and shame weaved into the immediate years after the abuse.  My personality continued to be warm and welcoming, but I developed a thicker shell — covering my soul’s wounds with hair dye, piercings, and large jewelry pieces to make myself appear “tough”.

    I always remembered what happened, and I always knew something about that entire experience didn’t sit right. But because it wasn’t a black and white situation, I was not able to verbalize what had actually happened (hence the reference to “several shades of gray” I wrote on the poster). 

    After a serious episode of flashbacks and violent illness, I decided to contact the local sexual assault center. The center provided me with eight months of intense counseling services, free of charge. Needless to say I was very grateful, as it helped me tremendously.  I look forward to continuing reaching out to additional support to help me in the path towards healing and recovery.

    So, why did I choose to reveal my secret through this project?

    Two reasons.  First, creativity is the fuel which drives my personal expression. Composing music, theatrical piano performances, and photography is how I most effectively like to make a statement.  Over the past year I have spent on this journey, I often thought about how to reveal it to my audience.  Sure, I could have written a thoroughly detailed and graphic essay.  Or I could have spilled it in a press interview. But when I ran across Project Unbreakable, it completely clicked. For me, this was the perfect way to reveal my ‘skeleton in the closet’.

    The prevalence of autism and sexual abuse exists. We know it exists. So why are we barely speaking on the issue?

    The second reason was to contribute to a conversation the autism community really needs to amplify. The prevalence of autism and sexual abuse exists. We know it exists. So why are we barely speaking on the issue? We need to find a way to bring the conversation back to life. Even if it is to break the silence — one person at a time.

    The decision to step forward was not easy. Many survivors don’t ever want to believe their abusers knew what they were doing. Survivors tend to protect their abusers with excuses to ease the pain that lies within the reality.  Survivors, particularly autistic survivors, may develop deep attachments and have difficulty imagining how a person who appears friendly can have negative intent.  I have always had a tendency to develop deep attachments in which I cannot seem to detach… no matter how much pain I endured, no matter how much I have sacrificed.

    What have I learned so far in this journey?

    My heart has always held an intense interest on the issue and a deep empathy for anyone (especially anyone with a disability) who has survived any kind of sexual violence. Confronting my own experience has helped me obtain an even greater understanding of how autistic survivors are affected by sexual assault.  

    There are several factors uniquely faced by many individuals on the autism spectrum which, unfortunately, lead many of us to being easier targets of sexual assault.  Lack of a well-rounded sex education, restricted access to effective communication, not being viewed as credible when we do step forward, and our ability to recall specific details through our unique sensory system are among the factors. These contributing factors deserve a separate dedicated article.

    In recent years, there has been a slight emergence of awareness, discussion, and reports published on ASDs and sexual abuse. However, as of this writing there are still no definitive statistics in the number of autistic individuals who are impacted by sexual abuse. We do know individuals with developmental disabilities have a higher chance of being sexually violated, even though the research findings show inconsistency in its data.

    Sexual abuse affects the entire lifespan of individuals with developmental disabilities, including childhood, adolescence, adulthood, and elderly life.  There are plenty of people with disabilities who don’t experience sexual assault until they’ve reached adulthood.  There may be individuals who have been raised in healthy households and are transferred to institutions or assisted living, where they face the possibility of abuse by direct support staff.  It’s important to point out that most caretakers would never sexually abuse their clients, but unfortunately it does happen.

    When it comes to surviving sexual abuse, every story matters.

    The truth is, I am one of the lucky ones. I was eventually able to verbalize what happened to me.

    One of the greatest reasons why we need to have a conversation on disability and sexual assault is that I am convinced — damn convinced — there are more people with disabilities who are sexually violated than what gets reported. People with very limited communication or access to communication supports are by far the most vulnerable. Having grown up with a brother with autism who is nonverbal, I’m very sensitive to the rights of people who do not speak as a way to communicate.

    This is not fair. We need to change this. We need to speak up, and we need to be facilitators to those who need to be heard.

    In Closing…

    To those of you who have been silenced — silenced by fear, silenced by shame, silenced by the barriers of communication, silenced by the threat to speak up: this does not make your story any less important. Your story is just as important as any other survivor’s story, regardless of the degree or extent of your experience, and regardless of whether or not you are able to communicate your experience. When it comes to surviving sexual abuse, every story matters.

    In this battle, no one wins.
    But at least we are no longer silent.

    Even if it is to break the silence — one person at a time.

     

    Image credit(s): Grace Brown

    To learn more about how you can participate in Project Unbreakable, or to view the photo gallery, visit: http://project-unbreakable.org/ or projectunbreakable.tumblr.com (trigger warning)

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    Reflecting on My Sibling Perspective Interview for TPGA and a Birthday Message to my Brother

    January 31st, 2012
    James at the beach during a family vacation to Hawaii (taken mid-1980s)
    Twenty-eight years ago today, in the midst of a rare snowstorm that had descended upon Tokyo, Japan, my mother gave birth by C-section to my younger brother, James Dilworth, at Sanno Hospital: a destination that happened to be where members of the Japanese Imperial Family would take expectant mothers for their infant deliveries.

    James arrived as a unique individual.  For one thing, he was born with vibrant red hair — a characteristic that was last traced back to one of our great grandfathers. His smile and his laughter was bubbly and infectious, and it was impossible to not reciprocate. What my parents would discover within a couple years later is that he also arrived with a form of autism which turned out to be significantly more intensive in comparison to my own diagnosis.

    An extensive “bouquet” of experiences has been collected in these last 28 years. These experiences extended their “branches” to a whole dynamic of emotions which in no doubt impacted our entire family.  It was difficult for everyone, including my brother.  However, it provided an excellent challenge in that it taught all of us some important life principles… mindfulness, non-judgemental thinking, and unconditional love.  We do not have to deny when things are difficult, and we do not have to deny our cycles of anger and frustration.  But how we choose to perceive these challenges play a major role in our outlook towards life.  Perception of hope and positivity is entirely determined by how much of that we allow ourselves to take in.  When we cease comparing expectations of achievements and success to the achievements and success of others, we begin to feel less pressure.  The outcome of an individual may not be what we had initially envisioned, but that does not mean we cannot strive personal achievement, personal success, and paving the path for that individual towards a full productive life.

    Shannon Des Roches Rosa from The Thinking Person’s Guide to Autism facilitated an in-depth interview where I spoke candidly about autism from one sibling’s perspective.  The conversation exchange unfolds James’ life story and the knowledge I gained as a sister of a person who shares my diagnosis, yet affects us both very differently. Because of the raw honesty and intensity of emotion I wanted to invest into this conversation, the interview in its entirety took a while to complete. In the end, I’m glad I did it and I appreciate being approached by TPGA to share my brother’s story with the autism community.

    If you would like to learn more about James’ life and what I learned from my experiences as an older sister, you can read the full interview here.

    Happy Birthday, James. You have influenced me in ways that I cannot justify with words. Thank you for your contributions to my life and for shaping me into the person who I am today. With Love from your Big Sis, Z.

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