22 December 2013

Acceptance brings joy

More and more, as I live this life, and share in the joys and tribulations of the lives of others, I believe that at the root of all human misery, is a lack of acceptance. Conversely, behind true joy, if you look for it, you can find acceptance.



  • If you can accept your body, you won't be miserable about how you look.
  • If you can accept your family as they are, you will be happier when you're with them.
  • If you can accept your circumstances, whatever they might be, you can work within them to solve whatever dilemmas you might encounter. You might even find space to laugh.
  • If you can accept that you can't control everything, then the uncontrollable becomes less distressing.
  • If you can accept that not all situations will come out the way you would like, then it becomes much more bearable when they don't.
  • If you can accept autism, you won't need to cure it or fix it. Instead you can move into a place of understanding and awareness, and you can embrace the true joys autism has on offer.
  • If you can accept that people come with their individual foibles, they all become more endearing.
  • If you can accept tragedy, grief has a much diminished impact.
  • If you can accept that some people are going to foist their heartache upon you, then you will be empowered to change your involvement, instead of being stuck in trying to change their "unacceptable" behaviour.
  • If you can accept that there can be different races, religions, sexualities, belief systems all at the same time, in the same world, that world becomes much more beautiful.
On the other hand, if you can't accept, you will always feel pain, hurt, misery as you fight against the current. To me, lack of acceptance is a fast track to misery.

It's your choice. I would like to challenge you to look at the things in your life that are causing you pain - can you find something in there you need to accept?


...

07 December 2013

Empathy: Autism and Neurotypical

Empathy, Autism and Neurotypicals


Empathy, in broad terms, is the capacity to understand and relate to the experience of another person. Compassion, having feelings in response to another person's suffering, flows on from empathy.

There is a point of view well and truly entrenched in the mainstream, that autism and a lack of empathy are synonymous.

I'm here to dispute this - in fact I'm going to completely turn it on its head.

It astounds me how the irony of this appears to have been lost on so many thousands of professional people the world over. How is it nobody seems to have realised that saying "Autistic people lack empathy," is in fact an active demonstration of a complete lack of empathy? Within this statement lies acceptance of assumptions made about what the autistic person is thinking and feeling. There is no challenging of those assumptions either, because the autistic person isn't really respected enough to be brought into the conversation. And the assumptions are so far from the truth, all the statement really displays, is a total lack of empathy skills. It's a combination of hypocrisy, ignorance and incompetence.

To broadly state that an entire percentage of humanity lacks empathy, while not taking the time to genuinely walk a mile in the shoes of those very people, smacks more of paternal condescension than it does of understanding, compassion or empathy. It actually only proves that neurotypicals, who have had the privilege of writing these descriptions, have at the very least totally lacked empathy for those they describe.

To say that autistic people lack empathy, simply put, lacks empathy. It is completely offensive, and undeservedly dehumanising. They become something to fear. It relegates autistic people to the fringes of society and makes them seem of lesser value than the rest of humanity. And if we say that autistic people are somehow less than neurotypical people, surely we are getting something wrong?

Neurotypicals make up the vast majority of the human population, thus giving them the privilege and power to assess and describe all groups, including themselves. But is the neurotypical view of itself a delusion? Neurotypicals consider themselves to have the highest order skills in empathy, but is that even true?



Lack of empathy is described in the Diagnostic & Statistical Manual (DSM-5, 2013) under Antisocial Personality Disorder, as "Lack of concern for feelings, needs, or suffering of others; lack of remorse after hurting or mistreating another."

  • When we don't take responsibility for our actions or apologise for our wrongdoings, are we being empathic?
  • When people judge how another is dressed, their body type or some aspect of their appearance, does that express empathy?
  • When people leave nasty malicious notes on others' pages on the Internet, encouraging them to go away and kill themselves because they have no worth, does that show empathy?
  • When we see starving African children on our TV screens and change the channel instead of facing their harsh reality, does that display empathy? 
  • Does racism express empathy?
  • When we judge someone for having depression or pain for too long, does that show empathy?
  • When we criticise the decisions of our friends and family, does that show empathy? 
  • When we make rape jokes, does that show empathy?
  • When we ask a rape victim what they were wearing, where they were walking, whether they had been drinking, is that an empathic response?
  • When we say "kids will bounce back, they're resilient," does that show empathy?
  • When we judge a woman for staying in an abusive relationship, does that express empathy?
  • When we make judgements of others in general, does that show empathy? 
  • When we say that gay love isn't real love, does that display empathy?
  • When we get angry about someone's religious choices, is that empathic?
  • When we encourage paparazzi to harass celebrities for our next fix of embarrassing photographs, are we being empathic?
  • When parents of non-verbal autistic children talk about curing them in front of them, or thoughts of murder-suicide, and assume that their child doesn't understand what is being said, is there empathy shown here? 
  • When we tell victims of crime or trauma to "get over it, leave it in the past," are we being empathic? 
  • When we bully people and laugh at their tears, are we showing empathy? 
  • When we shun people for being different, is that empathic?
  • When we pathologise different ways of perceiving the world, is that empathy?
That list could go on endlessly, with the terrible things which are witnessed in the day to day lives of the average person. The big question to ask ourselves is this:

When we expect empathy, but aren't taking the time and energy to understand the person in front of us, isn't something wrong with this picture? 

Just because neurotypicals make up the majority of people, doesn't mean the things we say about ourselves or other groups represent the truth. And the truth is, while we are very capable of empathy, humanity as a whole is also full of moments lacking empathy. Neurotypical people make a pretty widespread habit of not displaying empathy towards others, especially minorities. Neurotypical people though, would be offended to be generally described as lacking empathy. Autistic people, as part of the human race, are bound to have moments like anyone else, when they might not show empathy, but this does not mean that they lack empathy altogether, and it's an offensive and an insensitive thing to generalise such a negative descriptor.


Out of all the people I have met in my life, autistic people have repeatedly proven themselves to be the most empathic and compassionate of all. They are the first to help someone in need, the ones who do the sweetest gestures of love and caring. In my experience, autistic people have a great deal more empathy than the average neurotypical.

Sadly though, neurotypical professionals seem to be so generally incompetent at empathising with autistics, that they don't even notice when empathy is occurring right in front of them.



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ASAN calls for sponsors of Autism Speaks to step away

Autism Self Advocacy Network (ASAN), along with several other organisations, has recently sent out the following letter to sponsors of Autism Speaks.

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2013 Joint Letter to the Sponsors of Autism Speaks

To the Sponsors, Donors, and Supporters of Autism Speaks:

We, the undersigned organizations representing the disability community, are writing to urge you to end your support for Autism Speaks. We profoundly appreciate your interest in supporting the autism and broader disability communities. Our work is about empowering and supporting people with all disabilities, including adults and children on the autism spectrum, to be recognized as equal citizens in our society and afforded all of the rights and opportunities that implies. Unfortunately, Autism Speaks’ statements and actions do damage to that work and to the lives of autistic people and those with other disabilities. It is our hope that we may work together in a spirit of partnership to find new and less controversial ways for you to show your commitment to our community.

Autism Speaks’ senior leadership fails to include a single autistic person. Unlike non-profits focused on intellectual disability, Down Syndrome, Cerebral Palsy and countless other disabilities, Autism Speaks systematically excludes autistic adults from its board of directors, leadership team and other positions of senior leadership. This exclusion has been the subject of numerous discussions with and eventually protests against Autism Speaks, yet the organization persists in its refusal to allow those it purports to serve into positions of meaningful authority within its ranks. The slogan of the disability rights movement has long been, “Nothing About Us, Without Us.” Almost nine years after its founding, Autism Speaks continues to refuse to abide by this basic tenet of the mainstream disability community.

Autism Speaks has a history of supporting dangerous fringe movements that threaten the lives and safety of both the autism community and the general public. The anti-vaccine sentiments of Autism Speaks’ founders have been well documented in the mainstream media. Several of Autism Speaks’ senior leaders have resigned or been fired after founders Bob and Suzanne Wright overruled Autism Speaks’ scientific leadership in order to advance the discredited idea that autism is the result of vaccinations. Furthermore, Autism Speaks has promoted the Judge Rotenberg Center, a Massachusetts facility under Department of Justice and FDA investigation for the use of painful electric shock against its students. The Judge Rotenberg Center’s methods have been deemed torture by the United Nations Special Rapporteur on Torture and are currently the subject of efforts by the Massachusetts state government and disability rights advocates to shut the facility down. Despite this, Autism Speaks has allowed the Judge Rotenberg Center to recruit new admissions from families seeking resources at their fundraising walks. We believe this is not the type of action you anticipated when you agreed to provide support to Autism Speaks events.

Autism Speaks’ fundraising efforts pull money away from local communities, returning very little funds for the critical investments in services and supports needed by autistic people and our families. Only 4% of funds donated to Autism Speaks are reinvested in services and supports for autistic people and our families. Across the country, local communities have complained that at a time when state budget cutbacks are making investment in local disability services all the more critical, Autism Speaks fundraisers take money away from needed services in their community.  In addition, while the majority of Autism Speaks’ funding goes towards research dollars, few of those dollars have gone to the areas of most concern to autistic people and our families–services and supports, particularly for autistics reaching adulthood and aging out of the school system. According to the Department of Health and Human Services’ Inter-Agency Autism Coordinating Committee, only 1% of Autism Speaks’ research budget goes towards research on service quality and less than one-quarter of 1% goes towards research on the needs of autistic adults.

Autism Speaks’ advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society. In its advertising, Autism Speaks has compared being autistic to being kidnapped, dying of a natural disaster, having a fatal disease, and countless other inappropriate analogies. In one of its most prominent fundraising videos,  an Autism Speaks executive stated that she had considered placing her child in the car and driving off the George Washington Bridge, going on to say that she did not do so only because she had a normal child as well. Autism Speaks advertisements have cited inaccurate statistics on elevated divorce rates for parents of autistic children and many other falsehoods designed to present the lives of autistic children and adults as little more than tragedies.

Autism Speaks’ only advisory board member on the autism spectrum, John Elder Robison, announced his resignation from the organization this month in protest of the organization comparing autistic people to kidnapping victims and claiming that our families are not living, but merely existing, due to the horror of having autistic people in their lives. In his resignation letter, he discusses his four years spent attempting to reform the organization from the inside without success, stating, “Autism Speaks says it’s the advocacy group for people with autism and their families.  It’s not, despite having had many chances to become that voice.  Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”

The disability community recently celebrated the 50th anniversary of the Developmental Disabilities Assistance and Bill of Rights Act, legislation first signed into law by President John F. Kennedy in 1963. The law begins with the statement that, “disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society.”

We believe that statement to be true. Over the past fifty years, the disability world has focused on making these aspirations into reality, and significant strides have been made. Unfortunately, the actions of Autism Speaks attempt to undo fifty years of hard-won progress and take us further away from a world in which the goals articulated in the DD act are fully realized. We applaud you for your interest in supporting the autism and developmental disability, yet firmly believe that your support would have a more positive impact were it invested elsewhere. As a result, we the undersigned members of the disability community stand together in urging you to end your support of Autism Speaks and re-allocate your donations to a recipient who can better represent the needs and desires of autistic people and our families.

We would be glad to arrange a meeting to discuss these issues in more detail. Please direct your response to Ari Ne’eman of the Autistic Self Advocacy Network at 202.596.1056 or by e-mail at aneeman@autisticadvocacy.org.
Regards,
The Autistic Self Advocacy Network
The Association for Autistic Community
Autism Women’s Network
Association of Programs for Rural Independent Living
National Council on Independent Living
National Coalition on Mental Health Recovery
Little People of America
Not Dead Yet
Ollibean
TASH
The Thinking Person’s Guide to Autism
Queerability
Michigan Disability Rights Coalition
PACLA
Down Syndrome Uprising
ADAPT Montana
YOUTH POWER!
DREAM: Disability Rights, Education, Activism, and Mentoring
Taishoff Center for Inclusive Higher Education




2013 Joint Letter to the Sponsors of Autism Speaks