Saturday, April 5, 2014

On Blue Light Bulbs

I'll never forget that moment.

We entered a major home improvement store as we always seemed to be doing as homeowners. It was early spring and the Autism Awareness campaigns were in full swing. My then pre-adolescent son saw it first. It was a sign encouraging customers to “Light it Up Blue” by purchasing blue light bulbs.
He said, “Look, Mom! They are celebrating Autism.”

His face changed as he continued to read on. The sign said autism was a “crisis.” It explained how proceeds would benefit Autism Speaks search for cures and prevention of autism.

My son understood the word cure enough to know it implied he was sick. He looked at me despairingly and asked why they thought he was sick. I told him what I believe – Autism Speaks is absolutely clueless about the life of an autistic person and people are fearful of what they don't understand. He looked puzzled. He wanted to know why they didn't just ask autistic people. I explained how Autism Speaks refused to allow autistic people to have a voice in the organization. He shook his head and said how wrong that was.

Then he asked me the question I feared. What did they mean by prevention? Why would they prevent autism? My head was spinning. How could I explain this to my beautiful, perfect child? I blurted out that they cannot prevent autism because it is not a disease, that this was just a way to get more money.

Though not the full story, I could not bear to tell him the rest - that Autism Speaks was heavily funding research that would encourage families to terminate pregnancies. That they were hell-bent on discovering genetic clues so as to advise families against becoming pregnant. That this heavily funded organization wanted to eliminate people like my son from existence through eugenics. That this billion dollar organization intended to find a magic pill that would change my son into something less than, not him.

My heart sank like a rock into the pit of my soul. My son was devastated and deeply hurt and once again, I could not protect him. We left the store that day without what we came for. And we left with a little less hope for the future of humankind.

Saturday, February 8, 2014

An Open Letter to a “Feminist” Blogger

Dear Feminist Blogger,

I couldn't help but notice you posted a very public Facebook status that sarcastically criticized a marginalized group of people. I couldn't quite look away when you said that people advocating for their own rights was called “jumping the advocacy shark.” And I certainly couldn't walk away when you continued to denounce a civil rights movement to which you do not belong.

No feminist ever said that men know better to determine what women need. That's outrageous to a feminist. But here's the thing...if you say that “you,” as a woman (mother, grandmother, etc), know what's best for a group to which you do not belong (even if your own flesh and blood belongs to that group), you have played the part of oppressor - like the sexist who knows what's “best” for you. You don't get to decide who is worthy of human rights. That's what sexists do.

As women, we belong to more than just ourselves. We intersect with LGBT, racial minorities, those with disabilities, and more. Women will never be treated equally as long as other groups are oppressed.

“Women will never be
treated equally as long as
other groups are oppressed.”


If you decide to join the oppressors by claiming to speak on behalf of a marginalized group, well, you're not really a feminist after all. Please take your toys of privilege elsewhere because we, in the feminist sandbox, have a lot of work to do.

Sincerely,
Feminism

Feminism

  • is not about burning your bra.
  • is not about refusing to shave your legs or wear makeup
  • is not about encouraging women to be pro-abortion
  • is not about ruling over man

Feminism

  • is about autonomy and equality
    is about leaving decisions about our own bodies up to the individual
  • is about equal rights for all people, not just women
    having the same rights as the most privileged group

Saturday, January 4, 2014

Why the Autism "Community" Can't Get Along

The idea of a “community” in autism activism is a farce. This is because many who are deemed to be part of this community have opposing goals. From my experience, three completely different groups exist. Though there is crossover between some of the groups, the ends are polarized and cannot unite. Below is my perception of the groups, though more groups might exist that are less well-known.

Vaccine-injury Conspiracists

This group believes that autism is a preventable injury. Though no science supports this theory, they hold on to bogus research claims and snake oil. The bulk of this group believes that the pharmaceutical industry has created dangerous vaccines as a way to make more profit (by using cheaper but harmful additives and ingredients or creating unnecessary vaccinations). Others take the theory a little further and believe that the industry is purposefully poisoning the people. Regardless of how extreme, this group tends to believe in pseudoscience and promotes sometimes dangerous “snake-oil” treatments in attempt to cure autism. Groups such as Talk About Curing Autism and Age of Autism are examples of this group's mentality.

Eugenicists

This group consists of those who seek to eradicate the possibility of new autism births. They seek to find a prenatal test that can identify the likelihood of having a child on the autism spectrum so that families may be given the opportunity to terminate an at-risk pregnancy. They also seek to find ways to keep the so-called disorder from happening – presuming autism is a preventable defect (think Fetal Alcohol Syndrome). They hope to find a “cure” for those they believe are “suffering with autism.” They throw millions of dollars into “awareness campaigns” that stigmatize those who are on the spectrum. They also fund research that might further their goals. A good example of this group is Autism Speaks.

Neurodiverse

This is where the self-advocates, often identifying as autistic, tend to flourish. This group believes that disability is natural and that autism is a neurological difference and a variant of human diversity. This group vehemently opposes that autism should be prevented or cured. Led by disability activists, this marginalized group has been compared to the civil rights movements of the past. Their motto is “Nothing about us, without us!” This group promotes “acceptance” rather than awareness. Most of this group consists of those identifying as autistic. In the recent past, however, many non-autistic (aka allistic) allies have joined in support of the neurodiverse message. This group has been notoriously labeled by other groups as “too angry.” Others have attempted to discredit the movement by insinuating the members are not truly disabled and are NLMC (not like my child). A couple examples of this movement are the Autistic Self Advocacy Network and the Autism Women's Network.

You may already be able to discern why these groups cannot converge. Here are a few ways they do and do not.

Convergence

Eugenicists and Conspiracists
These two groups agree that autism is potentially preventable and treatable. Both tend to infantilize autism as believing it only affects children (somehow magically disappearing in adulthood).

Neurodiverse and Eugenicists
There is very little agreement between these two groups. Both groups do support scientific research about autism but the support for research focus is very different.

Conspiracists and Neurodiverse
I am at a loss to find any common ground with these two groups.

Divergence

Eugenicists vs. Conspiracists
The eugenicists represent legitimate (albeit ethically questionable) science. The conspiracists do not.

Eugenicists vs. Neurodiverse
The neurodiverse are strongly against cures and prevention for autism and consider autism a natural human variant. The eugenicists are strongly for cures and prevention and consider autism a disease or affliction. Eugenicists seek social awareness while the neurodiverse seek social acceptance.

Neurodiverse vs. Conspiracists
Conspiracists believe that all cases of autism are preventable injury and fight to stop this so-called injury. They promote treatments that are often harmful and dangerous. Neurodiverse do not support questionable treatments for autism nor do they support the idea that autism is caused by a preventable injury.

It is probably not so hard to see why there is little community behavior between these groups. It is unrealistic to believe that they will ever converge because they simply do not share the same goals. Community generally refers to common ground. It is not only unrealistic to infer we should all "just get along," it is offensive. What most really mean by that statement is that the marginalized group should be silenced.

I won't deny that there are people who do not fit neatly into any of the three groups. Often we hear those who say they support the neurodiverse message but still seek a cure for some. These statements are in disharmony and make little sense. Realistically, these people are supporters of the eugenics or conspiracists groups but do not want to identify as such. You simply cannot be for finding a cure for autism and at the same time believe autism is a natural part of human diversity.

For those who read my blog, it is probably easy to see that I am an ally to the neurodiversity movement. My belief is that those who are labeled - are living with a disability, should be calling the shots. I believe that people on the spectrum should have a voice no matter whether their voice is through augmentative communication or their vocal chords. I cannot possibly imagine that I, an onlooker, should have more say than this marginalized group of people. I don't get to determine how they should think and feel anymore then they do for me. This is their battle and I proudly stand beside them in support. As a parent, I stand beside my autistic son and let him be my guide.

Saturday, September 7, 2013

Stress Kills

People - real children, adolescents,and adults with disabilities are dying by the hands of mothers, fathers, and trusted caregivers.

THIS IS UNACCEPTABLE!


We cannot stop the madness, however, without first having a conversation about a system failure. But that broken system may not be about what you think it is.

  • It is not about finding better treatment for disabilities. 
  • It is not about finding cures for disorders. 
  • It's not even about finding better supports for the disabled.
  • It is certainly not about pity for caregivers.
Mental health and social supports for managing stress are missing or inadequate, especially in the United States, and that needs to change. 

Mismanaged stress is causing caregivers to kill their loved ones; it is not really about the victim at all.
"Care recipients may also be at risk for encountering abuse from caregivers when the recipients have pronounced need for assistance and when caregivers have pronounced levels of depression, ill health, and distress" (http://www.apa.org/pi/about/publications/caregivers/faq/well-being.aspx).

Stress is not always a bad thing, despite public perception. A little bit of anxiety can actually improve performance, for instance. It is when stress hits a certain threshold that it becomes detrimental to our health. When stress becomes chronic our health and well-being are in trouble.

US culture ingrains that we should be autonomous - self reliant and sufficient. Add to this mess a stigma applied to mental health issues. US culture uses the word "stress" like we use ketchup - it's applied to everything. But when someone is chronically stressed, the subject suddenly becomes taboo.

So what do we do? Do we continue to blame the victim - a very disturbing current media trend? Do we continue to blame the non-specific "system" for failing to prevent the murder? No, we need to take ownership of the problem - we ARE the system.

We (you and me) aren't doing enough to learn how to manage stress and care for our own health.
Ineffective "sedentary behaviors like listening to music (48 percent), reading (40 percent) or watching television or movies for more than two hours per day (34 percent) are strategies used for managing stress" (http://www.apa.org/news/press/releases/2013/02/stress-management.aspx ).
"...caregivers are less likely to engage in preventive health behaviors than non-caregivers and thus neglect their own health" (http://www.apa.org/pi/about/publications/caregivers/faq/well-being.aspx)
Health care professionals are not doing enough to help identify and treat those with chronic stress.
"Overall, 53 percent of Americans say they receive little to no support from their health care provider in managing their stress" (http://www.apa.org/news/press/releases/stress/2012/report-summary.aspx ).
Health care insurers aren't doing enough to ensure people have realistic access to care for managing stress. Some insurers are skirting the new Affordable Care Act's Parity Laws (http://www.apapracticecentral.org/update/2011/03-31/parity-law.aspx).

And our country, as a whole, isn't doing enough to ensure it's people have access to social supports.(http://www.ncbi.nlm.nih.gov/pubmed/22824248).

It is time to change the conversation to one of which is about all of us. It is time to take ownership of our own stress as well as the "system" in which we all play a part.

Only then, will the madness cease.

Friday, August 16, 2013

How Not to Abuse the Abused

It's my day off. I need to get away from this bleepity-beep computer. But more importantly, I need to write something about a situation I have been observing. It is a situation where people are locked in an endless battle because of impositions about how someone with PTSD (post-traumatic stress disorder) should behave (feel, really) regarding a situation.

Imposing values or feelings on someone is a dangerous business if one wishes to maintain any semblance of a peaceful relationship. It is even more dangerous, however, when someone attempts to impose feelings or behaviors on a person with PTSD.

These are some rules I believe we should all attempt to live by in general, but especially when we are interacting with someone who has experienced trauma.

  1. We do not get to determine how someone should behave or feel regarding a situation.

    We get to try to control our own feelings and actions regarding a situation. We can never presume, however, what it feels like to be another person in that person's situation. Applying our own logic, values, or feelings to the situation is passive-aggressive abuse of a person with PTSD.

  2. Winning an argument is unimportant.

    Every person subjectively views their world. Our memories are tainted by perspective and individual experience. It is a fallacy that there are "always two sides to every story." There are actually as many sides to a story as there are people who tell it. There is no universal truth.

  3. If someone with PTSD feels harmed, apologize!

    Express real remorse. Even if we did not intentionally hurt the person, the person is hurting. Defending our actions based on principle is going to continue to hurt the other person. So even if we don't fully comprehend how our original actions hurt someone, continuing to defend those actions are blatantly harmful.

  4. Helping someone with PTSD feel safe is the only thing that matters.

    People with PTSD live in a world that is viewed as threatening. Simple tasks most view as benign or take for granted are considered high-risk situations for the person with PTSD. For example, walking across a large parking lot, though does have some risk, is considered safe by most people. For someone with PTSD, this action can be viewed as an inherently dangerous act. Reassurance in the form of understanding and empathy helps - do it! Arguing that the situation is safe or benign is harmful - just don't!
I truly don't know if those who need to see this will. But it is good practice for all of us to follow. Perhaps this can even be applied to the political climates in the world. A little understanding and humility go a long way. 


Tuesday, April 30, 2013

This Raving Mother from Hell celebrates 1000 Ausome Things #AutismPositivity2013

My thirteen year old ausome son...

  • knows more about plant and animal biology than most college students
  • is more protective of earth's precious plants and animals than most conservationists
  • takes more seriously performing in a play or concert than most adults
  • is more decent to humankind than it often deserves

I hope someday to be half the amazing person he is.

Tuesday, April 16, 2013

From Radical Neurodivergence Speaking: Rhapsody is a Kitty & He Needs Help.

From: Radical Neurodivergence Speaking
Rhapsody is a Kitty & He Needs Help.

I hit my wall very suddenly & unexpectedly and was crying about missing my cat & wanting to go home to my cat, & Rhapsody's human, Jim Sinclair brought *a* cat--Rhapsody. And Rhapsody allowed me to cuddle him while kind of crying so hard I was shaking and it's totally not a cat's favorite at all, to be loved on by someone melting down, right? But he cuddled and purred and probably saved my next 12-24 hours.
Well, now Rhapsody needs help. He's been having scary episodes of respiratory distress and has spent time in the kitty ER. 
Read more here.