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Name: LinZ
Posts by :
- Theory and Practice of Disability & Rights
- Sexuality & Human Rights
- Integrating Disability, Sexuality & Rights
- Disability and Women’s Health: improving sexual and reproductive health care for women with disabilities
- Representation of Disability and Sexuality
- Understanding Disability, Sexuality and Rights in the Developing World
- Place a tropical fish tank in the waiting room.
- Use light fixtures with incandescent light bulbs instead of fluorescent tube bulbs. A number of individuals (myself included) consider fluorescent lights to be a visual and auditory violation, which can increase anxiety.
- Have music playing at a low volume in the background.
- Monitor the thermostat to an average temperature range of comfort (not too cold or too hot). Be sure to ask your patient if the temperature setting is comfortable for them.
- Lower the ringer volume level of office telephones, or place the phones on vibration mode.
- Provide a weighted blanket or throw if the patient is sensitive to colder temperatures (which office environments often are). Weighted blankets also really help with providing applied pressure that autistic individuals often use for sensory input or reducing stress levels.
- Have pillows available if the patient expresses discomfort on the exam table.
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.
Behind the Scenes of Our Interview for NPR Intern Edition
December 27th, 2011
Recording device and mic used to capture the audio components of our story project.
Our interview and multimedia piece on National Public Radio (NPR) came out last week. It was a very exciting opportunity and we felt honored to have been asked to participate in this
project. The project was two months in the making: containing a combination of recorded conversations, interviews, photographs and video which were documented between October and December 2011.
The reporter who interviewed us was Deanna Pan, and the photo and video were captured by Mallory Benedict. Both were working as interns at the NPR Headquarters in Washington, DC. Their names are hyper-linked to their personal websites, and I encourage you to check out their other works. These ladies are very talented at what they do, which made it even more exciting to work with them.
Even though Dave and I have been photographed and interviewed in our various living spaces for previous stories, it was the first experience where we were being extensively photographed unstaged in our natural element. We voluntarily agreed to it, but it took a while to get used to. After several visits made to our home, it became a little easier to not act as posed. All visits were scheduled, our requests for what we didn’t want documented were respected, and it never felt at any point invasive. Still, it was impossible to completely pretend the camera wasn’t there. I enjoyed the challenge of that experience, and I would definitely do it again. It’s great practice for not acting so tense in front of a camera.
One thing to point out (in any media-related story or piece) is the final result is always a highly condensed version of everything that is written, documented, photographed and recorded. Time and word limit constraints on media pieces are strictly enforced, which leads to a lot of extra footage cut out. That’s just the nature of the industry, and the producers are often relied on to come out with an accurate portrayal of a given story after it’s condensed.
So far, we have been fortunate to have worked with journalists and producers who have good intentions, making a good effort to ensure truthful depictions of our lives are captured given the limitations of their footage time and writing space. We try to practice caution when approached by any press or media, and have only accepted inquiries which we felt would respect a realistic and unbiased message to the autism community.
Regardless of how well-respected a media outlet may be, I still get nervous while anticipating how the resulting piece will turn out. A general rule of journalism is that interview subjects don’t get to see a piece before it gets released to the public.
When you are being documented, you recieve a chance to step out of your “bubble” and see yourself from an outsider perspective. It’s a different perspective in comparison to how you perceive yourself interacting with your surroundings. You get to know and understand yourself better as far as how others observe you interacting with your surroundings.
Inviting an audience into our home and sharing an intimate view of our day-to-day life has, on a surprising note, reassured us that we are not as alone in our life practices as once thought. There have been other people who have come out and expressed shared similarities. If sharing our story opens a window of opportunity for others to be less fearful of sharing their own stories or to at least feel less alone, then it’s worth the leap.
On a personal note… if I had known so many photos of me in my bathrobe and untamed hair were going to be on there, I would have at least tidied up my appearance! But the point of the piece was to capture us in our natural element. So hey — that works.
The link to the story does contain an accompanying article which follows the audio somewhat, but I’m also including a full written transcript following the video embedded below.
Also special thanks to Stephen Shore for his cameo appearance!
Transcription:
Host: Romantic relationships — the everlasting kind — are not easy to come by. That’s especially true for people with autism. Their disorder makes it hard for them to read body language and emotional cues, and to hit it off with new people. But Intern Edition’s Deanna Pan met one autistic couple who say that their condition is what brought them together.
[piano playing in background]
D. Pan: On the first floor of a town home in Alexandria, Virginia, Lindsey Nebeker rattles the keys of her piano. Her eyes are closed, her body swaying, entranced in a musical spell. In the basement, her live-in boyfriend, Dave Hamrick, tinkers on another handyman project. As usual, they don’t spend a lot of time with each other when they’re at home together because like most couples, they have their differences. For one, the two haven’t shared a bedroom since they first moved in together four years ago.
[piano fades]
Nebeker: Our temperature tolerances are very different. So, he likes to keep his room cooler at night when he sleeps…
Hamrick: About 65 degrees.
Nebeker: … than I do. I haven’t measured temperature about what I usually do…
Hamrick: Probably about 72.
Nebeker: I’ll take your word for it. I just know I like it warm.
Hamrick: You like it about 23 Celsius.
Nebeker: [laughs softly]
D. Pan: Sleeping in separate bedrooms may be unconventional for most couples, but then again, they’re not most couples. These two face rigid behavioral patterns, sensory issues, and an innate social clumsiness that makes finding and keeping friends difficult. For people with autism, dating (as one can imagine) can be daunting.
Shore: People with autism want to have a romantic relationship, but they’re unable to. They feel they… they don’t know the rules.
D. Pan: That’s Stephen Shore, an Associate Professor in Special Education. He too is autistic, and has been married for more than 21 years. He’s talking about the sexual and social knowledge most people pick up through adolescence. What other kids learn by observing, kids with autism miss out on. And it’s often tough to learn it on their own.
Shore: How do you go about asking a woman out on a date? How do you maintain the relationship? How do you move from being friends to intimate friends? These are things that most people seem to take for granted.
D. Pan: Things like non-verbal communication that can elude and frustrate people with autism. Innuendo, tone of voice, body language. In her tidy private bathroom, Nebeker practices her facial expressions in the mirror.
Nebeker: It’s so funny, ’cause it’s like I look at myself in the mirror when I’m ready and I think to myself, “Okay.. I look okay. I look okay today.” and then I walk out the door and then I immediately feel very self-conscious.”
D. Pan: A history of failed relationships convinced Nebeker to rule romance out of her life. But that changed when she met Hamrick, a meteorologist for the National Weather Service at an autism conference in Nashville in 2005. He was smitten, but she couldn’t tell. So he wooed her — slowly, systematically.
Hamrick: Frequent communications, and I let her know how special she was to me, and complimented her on her looks, and complimented her on how good she was with music. First move I made was that I put my hand on top of hers and she didn’t pull them away. So I knew that everything was going to be okay.
D. Pan: Since then, Nebeker and Hamrick have learned to love and accommodate the other’s particular quirks.
Hamrick: We usually will eat our meals separately because I have such a strong sensitivity to chewing and crunching sounds, and things like that. If there’s a situation where I can’t get away from it, and I’m stuck with it, I can start screaming.
Nebeker: I have this fear of eating in front of people, and sometimes I just can’t eat until… say, Dave goes to bed.
D. Pan: Sharp unexpected noises are physically painful for Nebeker. So before she or Hamrick enter a room, they alert each other with a soft reminder… a sort of, “Hey, I’m here”.
Nebeker: We will do a little “Pssst!” and we’ll wait for the other person to do a…
Hamrick: “Pssst!”
Nebeker: …back. “Pssst!”
Hamrick and Nebeker: [laughing softly]
[piano playing in background]
D. Pan: In an essay Nebeker wrote for Autism Spectrum Quarterly, she describes her love as an evolving contemporary symphony, full of off-key chords and uneven beats. A bit askew, if you will. But…
Nebeker: When you listen to it, it’s like one can learn to appreciate the unique different melodies and rhythmic contexts. If you love each other enough, you will make it work.
[piano fades]
D. Pan: For NPR’s Intern Edition, I’m Deanna Pan.
top image credit: LinZ
Disability and Sexual Rights 101: Slide Show and Overview
December 19th, 2011
Content Warning: The slide show (posted at the end of the article) contains references to negative and derogatory terms towards PwD, explicit sexual terminology, graphic self-destructive behavior, sexual abuse and sexual violence.
Having recently completed my training at The Disability, Sexuality and Rights Online Institute held by CREA, I thought I would share with you the “surface” of what I learned from my studies.
The intensive 9-week course consisted a group of 25 participants who were practitioners and activists on sexuality, disability, social justice, public health, development, and media. The participants represented several continents, including Africa, Australia, Europe, North America, and Southeast Asia.
Here is a summary of topics we covered at the Institute:
* We also covered gender rights for people with and without disabilities.
The objectives of the training were to create awareness about the disability and sexuality ‘intersection’, build a political perspective on disabled people’s sexual rights, and challenge one’s knowledge of the complex relationship between disability, sexuality and social justice. Although I related to a lot that was presented, it did challenge me to re-construct my knowledge with alternative approaches. It was a challenge that I embraced.
My favorite part of the experience was having the opportunity to gain a network of colleagues working in the disability, sexuality and rights (DSR) field, and to interact with each other through enlightening conversations. You really can’t put a price tag on the value of learning from others who share your interests.
As of now, the Disability, Sexuality and Rights Online Institute is being offered once a year (in the Fall), and it is entirely conducted online. For anyone pursuing the DSR field I would highly recommend taking this course. It is fairly competitive to get in (they only accept 25 participants to make the course more personalized). But it doesn’t cost anything to apply. Once CREA announces the dates for next year’s course, I will post the details.
Below is my final project assignment that was presented to the Institute: a slide show addressing the barriers that people with disabilities face in accessing sexual rights, and why sexual rights matter when it comes to disability rights advocacy.
Use the arrows to manually advance the slides. Click on the square symbol on the bottom right corner (just left of the ‘aS’ logo) to view it in fullscreen.
Presentation Transcript:
1. Title: A Brief Statement on Disability and Sexual Rights | Final Project Presentation for CREA’s Disability, Sexuality and Rights Online Institute 2011
2. Under the umbrella of social construction…
3. …and its Modules of Disability (Fate/Superstition-Model, Charity-Model, Welfare-Model, Medical-Model, Social-Model)
4. resides a development of myths, stereotypes and labels of people with disabilities which are negative, including (but not limited to)…
5. impaired, abnormal, freak, retarded, asexual, victim, childlike, innocent, tragedy, pitiable, outsider, unambitious, vanilla, dependent, needy, deformed, other, dangerous, weak, infectious, scrounger, lack-of-libido, beggar, faggot, nonorgasmic, ill, diseased, alien, impregnable, irregular, incapable, handicapped, unintelligent, stupid, chronic-masturbator, damaged, odd, dirty, burden, scary, crazy, insane, unsexy, bad-in-bed, ugly, midget, submissive, cripple, straight, boring, etc.
6. Including stereotypes and labels that when used, may appear positive, but are not beneficial…
7. brave, warrior, overcome, combater, hero, symbolic, savior, courageous, perfect-in-the-eyes-of-god, fighter, healing, differently-abled, against-all-odds, gifted, special, lesson-tool, patriotic, sick, can’t-help-it, amazing, blessed, handi-capable, physically-challenged, angelic, sweetheart, etc.
8. Denials, restrictions and revocations are often placed on people with disabilities, with limited or no allowance to…
9. self-defense, responsibility, consent, birth-control-of-choice, sex-talk, relationships, sexual-rights, intimacy, OB/GYN-checkups, sexual-technique-instruction, sexual-surrogacy, sexuality-education, parties, information, visibility, sexual-activity, privacy, marriage, decision-making, sexual-relations, bonding, pregnancy, informed-choices, pornography, erotica, personal-spending, sexual-expression, permission, dating, romance-novels, sleepovers, sexuality-careers, parenthood, sexual-exploration, XXX, choice-of-partner, truth, etc.
10. and limit the accessibility of…
11. sexual-health-clinics, sex-toys, strip-clubs, education, porn-shops, sexual-awareness, performance-venues, cues, interpreters, child-bearing, birth-control, sexuality-education, healthcare, safe-sex, dance-clubs, instruction, information, adult-movie-theaters, sexual-pleasure, alternative-communication, materials, prenatal-care, STD-protection, escort-services, pregnancy, adult-entertainment, burlesque-clubs, sex-positions, reproductive-healthcare-services, sexual-satisfaction, etc.
12. Even when restrictions and denials are conducted with good intention, well-meaning or lack of awareness, restrictions and denials do not equate love and acceptance.
13. When we as people with disabilities receive and take in all the stereotypes, labels, restrictions and denials, we feel…
14. inadequate, unworthy, out-of-place, unwanted, hopeless, shit, guilty, broken, ashamed, weak, minimal, unsafe, awful, shy, afraid, stabbed, abandoned, nasty, stigmatized, unprotected, imprisoned, hated, worthless, insufficient, self-hatred, angry, terrible, disgusting, unequipped, humiliated, ripped, exposed, bad, embarrassed, hurt, undefined, wicked, sorrow, deprived, torn-apart, evil, lost, unappreciated, ugly, dead, pointless, unsure, suicidal, objectified, dirty, upset, pain, insignificant, vulnerable, outcasted, uncomfortable, powerless, confused, alone, foreign, silenced, etc.
15. And it can lead to serious consequences…
16. suicide, rape, infertility, death, sexual-abuse, loneliness, anorexia, bigotry, never-experiencing-sexual-pleasure, exile, negligence, depression, cutting, STIs/STDs, prejudice, unemployment, unnecessary-dependency, anxiety, psychological-abuse, deprivation, self-mutilation, secrecy, bulimia, abortion, segregation, vasectomy, slavery, hospitalization, manipulation, detention, physical-abuse, domestic-violence, poverty, discrimination, seclusion, expulsion, genital-mutilation, sexual-assault, meltdown, never-experiencing-orgasms, sterilization, violence, exploitation, restraint, starvation, etc.
17. This is unacceptable. We must change the way we perceive (dis)ability and sexuality.
18. In order to do that, we need to understand the definition of sexuality and why sexuality is important to address.
19. Anna Freud, psychoanalyst and daughter of Sigmund Freud, once wrote: “Sexuality is something you do, sexuality is something you are.”
20. Sexuality is more than just sexual acts. Sexuality is not just about…
21. intercourse, cunnilingus, blow-jobs, masturbation, vibrators, cock-rings, ticklers, vaginas, garter-belts, dildos, anal-sex, orgasm, lube, sucking, booty, fucking, handcuffs, erections, tits, climax, penises, “doggy-style”, boners, french-kissing, masturbation, climax, breasts, sexual-positions, vulva, cum, 69, dick, balls, whips, pussy, shagging, foreplay, fetishes, jacking-off, lingerie, panties, ejaculation, clitoris, doing-it, nipples, licking, S&M, ass, clit, humping, cleavage, “pearl-necklaces”, twat, orgies, horny, getting-it-on, sticking-it, “home-runs” going-all-the-way, riding-the-pony, cunt, spanking, “checking-her-oil”, rim-jobs, felatio, banging, nuts, snatch, pecker, head, harnesses,”toolbox”, genitalia, “choking-the-chicken”, beaver, sexual-arousal, kink, etc.
22. Sexuality is a product of social construction, containing set of ideas about: appearance, actions, behaviors, expressions, thoughts, feelings, relationships, identity
23. Every culture contains an aspect of sexuality in its forms, meanings, and established sexual norms. Sexuality is a circular term, and its intertwining strands contain no clear boundaries. Sexuality is incorporated into…
24. self-expression, mentality, gender, religion, fashion, music, erotic-practices, fantasy, media, biology, career, what-you-do, values, friendships, senses, embodiment, science, employment, law, healthcare, reproduction, nature, sexual-orientation, politics, what-you-feel, education, spirituality, the-way-you-dress, art, psychology, needs, morality, desires, society, justice, thought, evolution, procreation, identity, personal-preference, manufacturing, personality, transportation, advocacy, body-piercings, economy, speaking-voice, philosophy, medicine, emotions, marriage, hierarchy, breathing, the-way-you-walk, tattoos, intimacy, research, personality, sitting-position, expression, war, technology, sports, building, power, food, human-rights, mood, hairstyle, makeup, communication, appearance, publication, family, movement, diversity, relationships, perspective, translation, mathematics, feelings, pleasure, interaction, dance, writing, ego, adaptation, language, pain, birth, death, romance, interpretation, performance, roles, age, behavior, viewpoints, exercise, traits, ambition, conversation, journalism, etc.
25. Our world contains both positive and negative influencers of our actions, behaviors, decisions, feelings, thoughts and values on approaching disability and sexuality. These influencers include our…
26. family, partner, spouse, culture, heritage, society, acquaintances, friends, media, government, coworkers, therapists, peers, professionals, politics, ethics, leaders, scientists, religion, philosophy, caregivers, doctors, teachers, friends
27. …and what determines our positive and negative influencers will vary according to the individual.
28. We express and interpret (dis)ability and sexuality in a variety of ways…
29. film, music, poetry, fantasy, fine-art, dance, photography, creative-writing, technical-writing, collage, prose, teaching, scientific-research, style, modeling, mixed-media, public-speaking, painting, reporting, blogging, presentation, sculpture, etc.
30. How about stepping outside the normative frameworks? There’s no reason why people with disabilities can’t develop these careers or aspire to be…
31. sexuality-educators, porn-stars, sexuality-counselors, makeup-artists, adult-entertainers, Playboy-Bunnies, burlesque-dancers, sexologists, fashion-journalists, marriage-family-therapists, sexual-rights-activists, fetishists, escorts, lovers, runway-models, sexual-abuse-counselors, midwives, entertainers, sex-shop-business-owners, sex-therapists, personal-trainers, showgirls, fashion-designers, obstetricians, human-sexuality-professors, erotica-photographers, massage-therapists, couture-salespeople, parents, hairstylists, romance-novel-authors, gynecologists, club-owners, sex-advice-bloggers, doulas, lingerie-models, dominatrices, sex-researchers, etc.
32. People with disabilities experience the multiple facets of sexuality just like non-disabled people experience the multiple facets of sexuality.
33. So, why is sexuality important? Because sexual rights are integrated into human rights. Sexual rights are human rights.
34. We are all interconnected by the fact that we re human beings. As human beings, we have an entitlement and right to…
35. self-expression, safety, empowerment, positivity, hope, independence, peace, equality, beauty, acceptance, ambition, personal-success, options, security, inclusion, love, support, respect, dignity, intelligence, access, capability, identity, companionship, assistance, fairness, liberty, talent, joy, contribution, well-being, value, affirmation, copyright-protection, happiness, consent, sexual-pleasure, education, community, thought, sexual-fantasy, belonging, nationality, sexual-identity, movement, protection, employment, interest, contentment, validation, connection, leisure, encouragement, marriage, kinship, sexuality, care, pride, health, religious-practice, freedom, responsibility, strength, appreciation, service, personal-opinion, choice, morality, belonging, etc.
36. This includes our sexual rights. Sexual rights should protect everyone, regardless of disability.
37. Rethink sexuality justice. Exercise your sexual rights and respect the sexual rights of others.
image credits: h de c
Honoring Transgender Day of Remembrance and a Simple Message on Humanity
November 20th, 2011
Today is the 13th International Transgender Day of Remembrance: a day of reflection which memorializes, recognizes and honors those who have lost their lives as a direct result of transgender discrimination. It is also a day which serves to remind us of recognizing anyone who represents the transgender community, and to listen and validate the voices of these represented individuals.
Even though Transgender Day of Remembrance (TDOR) has been observed for quite some time, it has received very little — if any — mainstream media coverage. As a result, not many people are even aware of this global event. If you were to walk up to someone on the street and mention TDOR, chances are they have never heard of it. As with all other efforts regarding human rights and social justice, this awareness will be picked up by mainstream media with time and consistent activism.
Since I have no personal experience, I don’t feel I am in a position to speak extensively on the topic. Instead, I would like to direct you to the sources and personal perspectives of those who are more qualified to discuss transgender issues: those who live with it themselves, and those who have to face transgender discrimination issues on a daily basis.
International Transgender Day of Remembrance
Semantics, Gender, and ‘Cis’: An Important Message About Vocabulary – Terminology 101 that provides excellent comparisons on ‘othering’ and ‘labeling’ people, including the transgender community.
Intersex Day of Remembrance – This transpired on November 8th, but wanted to include this for you to check out and be educated on as well.
As a person with a disability, I would like to leave you with this in regards to humanity as a whole –
In the United States and several other nations, tremendous progress has been made to include and accept the gay and lesbian members of our community. But as much as people don’t like to admit, the transgender community continues to face a treacherous road in the fight for equal human rights. This especially applies to transgender individuals representing racial and other minorities. This includes transgender individuals with disabilities.
When did human rights become something we had to fight for? Every one of us, regardless of disability, embodiment, gender, or orientation are entitled to basic human rights. It is unfortunate that those of us who fit outside the social norm have to fight for rights which every human being are entitled to in the first place.
As incidents (reported and unreported) of harm, injury, and death to anyone labeled ‘outsiders’ of heteronormality continue to occur, I question why we have to discriminate in the first place. I simply do not understand why discrimination and prejudice is necessary. Relating to the issue previously addressed in regards to disability and sexuality, some people may discriminate to separate themselves from anything odd or different. Those who practice prejudice may be reassuring themselves that they fit into societal norms of embodiment, appearance and sexuality. As someone pointed out to me in a recent conversation: “Society loves its neat categories, especially binary ones. Including for many attributes which are actually spectrums.”
In order for us to shift the paradigm of perception, we need to rethink social justice outside the normative frameworks. As a reminder to all, let us remember that every one of us are interconnected to each other in the simple fact that we are human beings. How we express and identify ourselves needs to be observed with respect and dignity. Let us treat one another like we would like to be treated.
Image sources: Admean, ALIREZAGRAN
Our Voices: What Are the Greatest Myths of Autism and Sexuality?
October 30th, 2011
Autism and sexuality is not a conceptualized idea. It is a reality.
Myths and misunderstandings tend to be especially magnetized to cultural taboos. At present, the combination of disability and sexuality remains a taboo to the eyes of those who have not been exposed to the concept. For those who have been exposed to the concept, there can be the challenge of having it be seen as positive.
In dispelling misunderstandings regarding ASDs and sexuality, resources containing personal perspectives addressing the truths are minimal and difficult to locate. Mainstream audiences require specific directions to those resources, since it’s not as easy as making a phone call to an autism organization or performing a Google search on autism and sexuality. Resources to accurate personal perspectives have increased, but resources to myths often still get mixed in.
During an autism town hall meeting held in April 2011, Dr. Peter Gerhardt tweeted: “It is just another aspect of human behavior but we have so pathologized sexuality that most are afraid to even discuss.” It’s true… we are afraid to discuss it. But why?
Myths are created out of fear and awe — to separate ourselves from anything odd or different from the social norm.Human instinct relies on establishing explanations to ensure what is happening is “normal” (i.e. why the Sun rises and sets each day). Traditionally, myths have been created to explain the reasons and responsibility of nature’s occurrences. Myths are also created out of fear and awe — to separate ourselves from anything we are taught are odd or different from the social norm. We feel comforted and protected when we reside within the social norm.
The majority of us who receive and believe in myths do not do so out of malicious intent. The majority of us who consume myths are simply misunderstood, considering we may never have had an opportunity to be exposed to the truths.
There will always be people who will hold onto their belief of a given myth after hearing a truth. When it comes to truths regarding ASDs and sexuality, it may take a while to absorb the facts. However, most people are willing to listen if the information is delivered in a consistent and convincing manner.
The more voices and stories we hear from individuals, the closer we will be to dissolving this taboo. The unique aspects found in sexuality in general is not meant to be labeled as a social norm, but we can infuse it into our society to where it is not viewed as ‘subhuman’, ‘abnormal’, and any other term with a negative connotation.
So, what are the greatest myths of autism and sexuality? The answers can be found through the people who live with it themselves. I recently reached out to fellow self-advocates via Twitter and email correspondence and posted the following:
What do you believe is most misunderstood about ASDs & sexuality, and what myths needs to be addressed in regards to ASDs & sexuality?
Here are the responses from a small group of adults on the spectrum who participated in the conversation…
I think the biggest myth is one that most people have about ASD individuals. That we don’t have feelings like “normal” people.
Wolfie (@wolfie74)
____
I think the biggest myth is that we’re incapable of feeling love or higher emotions at all.
TG (@outoutout)
____
…that our people can’t, won’t, don’t want to or will never have a sexual or romantic relationship, so why teach consent?
Mand Hoskins (@Mandlovesgeeks)
____
The biggest myth I encounter is that we are incapable of being tender and empathetic to our partners, sexually or otherwise.
____
The biggest myth is that we are [all] asexual. That’s not true. Many of us have families. We have not learned to procreate without sex yet.
____
That there’s anything that can be universally said about the sexuality of Autistics. Some are straight, some are gay, some are bisexual or might not even care about gender of their partner as far as attraction. Some might be very straight to the point, some might be into more extensive sexual play, and some might incorporate “kinky” aspects into their sexual interactions. Some might be of typical sexual attraction, some might be hyper sexual, and some have an asexual orientation. There really isn’t one Autistic sexuality, just as there isn’t one sexuality or approach to sexuality in the general public.
____
[The greatest myth is] that we don’t know or are not capable of feeling love… or that we are scared to express sexual desires.
Zachary Harden (@zscout370)
____
I’m afraid to express sexual desires, but it was people — “normal” people — who instilled that fear in me. That’s not autism’s doing. Now, when it comes to affection, attachment, love, I often feel those with such intensity that I am overwhelmed and shut down.
____
There’s this myth that Autistics who do kink play make bad dominants. This is bull crap.
Anonymous
____
We are alike more than we are different. We have all the same needs as any other… love, connection, sex — we just may go about getting them met differently.
The contribution of voices does not end here. The more voices heard, the more complex and rich this “orchestral piece” will resonate to the audience who need to hear out this awareness.
Self-advocates in the autism community: you have the spotlight. What do you believe is the greatest misunderstanding about ASDs and sexuality, and what myths need to be addressed in regards to ASDs and sexuality?
Image Credits: Jack Heart, Tayrawr Fortune, ortizlucy80
‘Alien to the World’: A Filmmaker’s Personal Perspective on Asperger’s Syndrome
October 21st, 2011
"Alien to the World" film poster, courtesy of Robert Mann, M.A. (click on image to enlarge)
I am delighted to share this with all of you. Recently, a documentary film titled ‘Alien to the World’ has become available to the public via the Internet. Robert Mann, an aspiring filmmaker and journalist from the UK who recently completed his Master’s at Bangor University, created this personal perspective piece as part of his dissertation project. Robert takes on the role as director, narrator, and producer behind the film. In addition to all that, he plays the central character. In ‘Alien to the World’, this young man invites us to hear and witness his personal experiences with Asperger’s Syndrome. It’s mainly focused on what his daily life routine is like and how AS still affects his life as an adult (at the time of filming).
Issues that are discussed include employment, school life, dating life, social activities, transportation, and special interests.Throughout the film, we also get a glimpse at the personal perspective of a few other adults on the autism spectrum.
During the process of creating the film, Robert asked me if I would be willing to contribute some of my original music to the soundtrack, which I gladly accepted. It was an honor to be a part of this project.
Posted below are 7 video clips: the first one containing a brief introduction by Robert, and the film itself (which contains 6 parts). One issue you may run into is capturing all the spoken narration (especially if you have audio processing difficulties). The audio transcription feature provided by Google is not very accurate. It would be fantastic to figure out a way to transcribe the narration so everyone who watches this film can hear out the deep and thoughtful perspective he shares.
Be sure to check out Robert’s personal blog The Wonderful World of Autism, where he writes on “tales of hope and inspiration involving individuals with autism, Asperger’s Syndrome, and other Autism Spectrum Disorders”. It’s a blog I personally enjoy reading. You can also follow Robert on Twitter and his Facebook page Autistic Ambition Productions.
6 Things an OB/GYN Needs to Know When Taking Care of a Patient with ASD
September 26th, 2011
Do any of us really enjoy visiting a gynecologist?
Without a doubt, visits to an OB/GYN (obstetrics and gynecology) specialist are among the most stressful health care procedures, and it especially applies for people on the autism spectrum. For many individuals, the idea of invasion and touch (even when permitted) can cause a sensory overload and may even lead to anxiety attacks and meltdowns. And because the OB/GYN office environment is not often “ASD-friendly”, these individuals may avoid them altogether.
Unfortunately, this can lead to serious consequences. OB/GYN visits are essential in maintaining and ensuring a person’s sexual health and physical health. OB/GYN visits are essential to those who are sexually active and not sexually active. People who are not sexually active may not necessarily need to go in for pap tests, but they still will need to go in for routine monitoring of cysts, tumors, and any potential cancer development (cervical, ovarian, uterine, etc.). Women may also need to go in to obtain birth control to regulate or kick-start irregular or ceased periods (that was particularly what my first visit was for).
Recently, Nominatissima (a fellow autistic adult and self-advocate) published a post in her Sex and the Spectrum series on the particular issue regarding autism and gynaecology (as it’s spelled in Canada). I was inspired after reading her post to add to the conversation with my own personal perspective, and continue to spread awareness on a topic which still remains under-discussed.
If you are an OB/GYN, here are 6 things you need to know:
1. You will have patients on the autism spectrum.
People with disabilities may vary in challenges and characteristics, but we all still participate in the basic stages of human development: physical and sexual. Basically, it means people with disabilities (including autism) are capable of developing sexual desires, act on sexual needs, become sexually active, and getting pregnant. It also means people with disabilities can develop menstrual issues, fertility issues, STDs/STIs, menopause, cervical cancer, ovarian cancer, and genital-related infections. So individuals with disabilities need to be attentive to their physical and sexual health just as much as other people do.
Most medical professionals are aware of this. But once in a while I’ll run into a medical professional who isn’t as knowlegable about the sexuality component in people with developmental disabilities.
Do not assume right away that your patient does not want information on sexuality. A study conducted by Beckmann and Barzansky in 1989 concluded that many women with disabilities wanted information on sexuality, but very few were actually asked. Less than 20% of those OB/GYNs offered sexuality counseling to their patients, and only 1 in 5 women sampled felt their doctor understood their sexual needs.
If a patient expresses desire to become sexually active or become pregnant, it is important you respond to their desires with respect and dignity.Do not assume that your patient is asexual. It is safer to assume that your patient is sexual and ask them the same set of questions as you would your other patients. This includes sexual history (past and present) and any plans for pregnancy.
When it comes to discussing birth control options and STD protection, it’s important that you remain considerate of any concerns your patient expresses in particular methods. Sensory issues play a significant role in autism, and different people on the spectrum will vary in their tolerances in utilizing the available methods. For instance, condoms are extremely difficult to use for some people with ASD due to the texture, feel, and odor of the material (latex, synthetic, or lambskin). You will also want to document any known allergic reactions (latex, oils, lubricant ingredients, hormone, spermicide, etc.). Once you are aware of the sensory issues and known allergies your patient has, it will be easier for you to make recommendations based on their needs.
Unless there is a specific unrelated fertility issue, people on the autism spectrum have the capability to become pregnant and bear children. Although not everyone will be able to develop the skills required in parenting and raising a family, there are plenty of us who have that capability to raise a family if we so choose. Therefore, if a patient expresses desire to become pregnant and go though pregnancy, it is important you respond to their desires with respect and dignity.
2. Accommodations are essential. Period.
In the United States, the American with Disabilities Act states the requirements of public accommodations for individuals with disabilities (as pointed out in the ADA Title III). Although these requirements apply to people with any type of disability, the document focuses more on accommodations for people with mobility disabilities. As a result, medical professionals in the health care industry may not even be aware that people with ASDs and developmental disabilities require accommodations, too. So the concept of having to make accommodations for patients with ASD might be new to an OB/GYN, since an OB/GYN do not typically cover disability and sexuality in their licencing requirements. People with developmental disabilities may not require structural accommodations (such as ramps, elevators and wider entryways). But these people still need accommodations. Lighting, temperature, paint color on the walls, sound level, sound frequency, and furniture textures inside a clinic can strongly affect an autistic person.
Re-vamping your entire clinic or office space may rack up some costs and effort. But you can see this as benefiting all of your patients… allowing them to take in the relaxing effects of ASD-friendly accommodations. It will be sure to entice most anyone who walks into your clinic, and that’s well-worth the money (and the growth of your business).
You can…
If your patient has an object they like to hold onto for sensory input or reduce stress, allow them to bring it into the examination room so they can focus on that during the exam. Although this will not alleviate their stress level entirely, having something familiar for sensory input will make a difference.
At any point during the appointment, your patient may engage in stimming behavior. Do not be alarmed when this happens and allow them to stim. This is a positive thing. Stimming is a common behavior in people with ASDs, and one reason we stim is to calm ourselves from unfamiliar situations, as well as to provide balance to under-served or over-served sensory input.
Refer to Nominatissima’s post for more great ideas on accommodating your patient on the ASD spectrum.
3. Advanced preparation and a precisely spoken walk-through during any procedure are strictly required.
Prior to the first appointment
People with autism tend to handle experiences… even unpleasant experiences… a lot easier when they know in advance what that experience will be like.According to Dr. Shana Nichols (clinical psychologist, author and founder of the ASPIRE Center for Learning and Development), a potential patient on the autism spectrum can begin preparing as early as six months before their scheduled gynecology exam or procedure. They may want to take a tour of your clinic and get an idea of what your office environment is like. While they are there, you will also have an opportunity to introduce yourself in a casual set-up. Allowing the person to visit your clinic prior to the appointment when they request it is beneficial, because people with autism tend to handle experiences — even unpleasant experiences — a lot easier when they know in advance what the experience will be like. Let them know how they will need to prepare for the appointment, what to expect during the appointment, and what (potential side effects or reactions) to expect in the following days after the appointment.
If you make major aesthetic changes to your clinic in between their introductory visit and the date of the appointment, let your patient know in advance so they will know what to expect when they walk in.
When the time comes to schedule an appointment, allow a longer time frame than typical appointment times. If a typical appointment lasts an hour, schedule for an hour and a half (two hours if necessary). People with ASD often need additional time to process the information that you provide them, responses to your questions, and preparing for the procedures or exams being given. Some people may also need additional time to exchange communication with you, your nurses and your staff (via an accompanying interpreter or alternative communication device).On date of appointment, before the exam or procedure
Before any procedure or exam, establish a “code” word or non-verbal indicator that your patient can use at any point that they want to stop or take a break. This will provide reassurance to your patient that they are in a safe place and still gives your patient a sense of self-control. People with ASD need to establish self-control in order to feel safe. And in order for any visit with an OB/GYN to work, the patient needs to feel safe.
During the exam or procedure
OB/GYNs usually do a good job with alerting patients the steps of a procedure they may be performing. It’s especially crucial you communicate with your ASD patient every step you are about to take in a given exam. An example you may give to a female patient during a pap test: “We will now be inserting an instrument called a speculum to open up the vagina. This instrument is made of metal (or plastic), and you may feel the muscles in that area stretching. This is being done so it will be easier for me to be able to see if your cervix, ovaries, uterus and vagina look normal. Now you will feel a slight pinch. This should not hurt. I am simply using a cotton swab to collect cells so we can test them in the lab to make sure your cells are healthy.”
After the exam or procedure
If test results are not available on the day of the appointment, you will want to provide clear written step-by-step instructions on how your patient can obtain their results. You will also want to let your patient know of any possible side effects, discomfort or sensations that may be felt inside the body following an exam or procedure (as explained earlier).
Advance to page 2 (tab located below)…
The Science of Autism and Orgasm
June 29th, 2011
A reader on the autism spectrum brought up a concern in regards to recent issues in the bedroom. Once having an easier ability to achieve an orgasm, this person is finding that the process has become increasingly difficult:
“[Since learning more about my ASD diagnosis] I’ve been noticing a growing awareness in what is going on around me and what my body is feeling… and it is becoming sort of distracting during sex, mainly orgasm. As I began to feel my self start to climax I suddenly became very focused on the noises and things in the room such as the fan running, and how the moving air felt on my skin. Then I suddenly became overwhelmed with my body itself, to the point that it took away the orgasm. I focused intensely on how the sheets felt against my skin, how my partner’s skin felt on mine, how my hands felt running through [my partner’s] hair, then the ever knowing coldness I get through my body in that passionate moment. I kept thinking… what is wrong with me? Is there something wrong with me? Why in this moment of love am I so overwhelmed with my surroundings when I have something so special happening? Do [people on the spectrum] experience intimacy and orgasms differently [than others]? It was way more intense but very overwhelming to me, too.”
This person is not alone. Others on the spectrum have voiced similar concerns and curiosity regarding these specific issues, which creates a good excuse to bring up such a bold topic.
Let’s make one thing clear: people with autism do experience orgasms. But how different is the orgasm experience for an autistic individual? Is it more intense? Is it less intense? Is it the same?
There has yet to be a scientific study conducted on orgasm and its effect on people on the autism spectrum. So just for entertainment’s sake, we will discuss the possible hypotheses, address the possible challenges unique to individuals with ASD or sensory sensitivities based on personal perspectives, and wrap up with final thoughts.
First, let’s break down the hypotheses…
A Simple Presentation on Autism and Asexuality
February 21st, 2011
I stumbled upon a video the other day which provides a simple way of explaining the “marriage” of two complex components: autism and asexuality. Each component in itself is mysterious, complex, and at times misunderstood… that many are often left curious and fascinated by how the two can sometimes blend together.
Even though I am not asexual, I do recall asexual tendencies in certain elements in my past, and therefore I have somewhat of an understanding whenever I have conversations with other autistic individuals who identify as asexual.
There is certainly more to address on autism and asexuality than the content of the slides provided in this 3 minute, 6 second video (which covers asexuality, sexual orientation and gender identity). However, for those who are just beginning to explore the topic, this slide show presentation is an excellent place to start.
A special thank-you to Craig Thomson (weaveintothewin2) for creating the video!
Also, be sure to check Craig’s other videos in The Autism Survival Manual.
Image Source: wanderflechten
Video source: Autism Survival Manual – Autism and Sexuality by weaveintothewin2
Recap of Geneva Centre for Autism 2010 International Symposium – Part 2: A Message of Unconditional Love
November 23rd, 2010
The moment had finally arrived for me to walk across the stage towards the podium, clenching onto the papers which contained the speech I would deliver to close the 2010 International Symposium in Toronto.
Initially, I had a long-developing case of butterflies that most speakers and performers would feel. Even after 5 years of public speaking under my belt, there are always the concerns that pop up in my head right before you take the stage… “What if this doesn’t go well? I hope I don’t fuck up.” Once I got up to the podium, however, those concerns disappeared into thin air.
Dave had completed the first half of the Closing Address with a slide show presentation which included an electromagnetic spectrum diagram with the different “wave patterns” of romantic feelings a person may feel. He included a run-through of tips for individuals with ASDs who may be interested in pursuing a date or a relationship. To close his segment, Dave shared the story of how we both met (a coincidental run-in at the ASA National Conference in 2005). I always let him tell that story to our audience since he presents it so well.
I applied a twist to the second half of the Closing Address by revealing a raw account of my life, based on a theme of unconditional love. When Dave and I were initially asked by the Symposium organizers to speak about love, I immediately thought of expanding it to a theme that most anyone can relate. After all, love does not just exist in romantic bonds. Love also exists in our families, our friendships, and in ourselves.
A really great way to connect with your audience is to share your own personal experiences. Some of these experiences may be painful and difficult to share, but in the process of writing or composing a creative work, I always challenge myself to confront past memories like a head-on collision. I allow myself to feel the pain that dwells inside these emotions, admit my vulnerability, and as a result, a sense of self-understanding and relief ensues. When comes the time to deliver it to my audience, I may still be facing the fear of re-living these emotions, but I am very willing and ready to share that part of myself.
In the final days of preparing and writing my speech, I re-lived my childhood. I re-lived the experiences of growing up with my brother and never being able to connect with him like a typical sibling relationship. James has far more intellectual challenges, and even though he and I share the same diagnosis, my brother always remained a mystery to me. My parents and I could never fully understand what he was feeling or what he was thinking. When he had his behavioral meltdowns, it was always very difficult to figure out how to help him, since he has not as of yet been able to explicitly communicate his feelings to a level in which the rest of the world can understand. Currently, in his late 20s, he is still unable to speak and only uses a maximum of 10 sign language symbols.
Through the example my parents set, I was able to learn one of life’s most important lessons: how to love someone unconditionally.In raising James, my mother and my father were forced to confront themselves on what it really means to be a parent. Through the example my parents set, I was able to learn one of life’s most important lessons: how to love someone unconditionally without expecting to receive that reassurance you are being loved in return. However, even though I have not been able to tell whether James loves me or even recognizes me as his sister, I’m convinced he understands and takes in a lot more that any of us will ever realize.
In addition to sharing that story about my family, I also spoke on what romantic love is like for 2 individuals with autism. Taking the same metaphor in an article I wrote for the Autism Spectrum Quarterly, I described how it is like a collaboration between 2 composers of a symphony written in the Contemporary period. Symphonies in this era contain an abundance of off-key chords and uneven beats, but when the creation is heard in its entirety, the listener can learn to appreciate it. During my childhood years of studying classical piano, the pieces written during the Contemporary period were among my absolute favorite to perform in recitals, because this kind of music was very different and mysterious.
Even though falling in love may come naturally for many of us on the autism spectrum, companionship is an art that needs to be practiced and cultivated.
I told our audience that even though falling in love may come naturally for many of us on the autism spectrum, companionship is an art that needs to be practiced and cultivated. Two individuals are coming together, and each individual has his or her separate needs, sensitivities, and preferences. This can happen in any relationship, but for individuals with autism or Asperger’s, it is often magnified because of the tendency towards self-centeredness. There are two requirements in order to make these partnerships successful: 1) compromise, and 2) effective communication (whether it be verbal, written, typed, etc.). This very much applies to Dave and myself.
In closing my speech, I confessed that even with healthy communication in our relationship, I still have trouble verbally expressing strong emotions due to their overwhelming nature. I told my audience how I tended to say to Dave, “Love ya” instead of “I love you”, and how I can’t always look at him in the eye. I try to reassure him by saying, “Just know whenever there is a time I have trouble looking into your eyes, I hope you’ll still know that I love you.”
We all feel love, and it’s a concept that’s very real.
Judging by the mixture of tears and laughter expressed by our audience, it’s safe to say Dave and I created a dichotomy of emotions in our delivery of the Closing Address. But it ended up being well received. We were both extremely humbled by the positive support and feedback, as this alone is what encourages me to continue to do the work that I do for the autism community.
Remembrance and unconditional love… the two concepts I will always remember solidifying the theme of my very first visit to Canada.
image source: Laura4Smith
Reflecting on My Sibling Perspective Interview for TPGA and a Birthday Message to my Brother
Behind the Scenes of Our Interview for NPR Intern Edition
Disability and Sexual Rights 101: Slide Show and Overview
Honoring Transgender Day of Remembrance and a Simple Message on Humanity
Our Voices: What Are the Greatest Myths of Autism and Sexuality?