A few months ago, on Facebook and on both my accounts, I sent many people in my social networks invitations to a Facebook cause called "Join in the Fight to Stop Dishonoring the President." I was gratified to get a good response to this cause, though many simply ignored it. Always, I attached a message with the cause, stressing that it was nonpartisan, not agenda-driven and with a focus to restore honor to the office of the Presidency despite past Presidents' unPresidential conduct that has disgraced the office. However, many still saw this cause as controversial and offensive and let me know it. They sent me messages, telling me angrily, "Don't ever send send this to me again! Don't ask me to support HIM!" or "I'm not about to support this PIG!" One person declared, "This is it! I'm unfriending you now! No Obama supporters will stay on my page!"
Even more recently, I had posted about a very popular, even "cool" child abuse awareness movement that sponsored many awareness events, complete with a host of festivites during the month of April. Though I, like any person of good will, am gratified when people work to help children in distress and seek to protect all children (I'm a mom, after all), I felt a vague unease about the Founder of this movement and how this Founder was going about it all. Also, the tight financial situations of most of those close to me made fund-raising unrealistic. However, I agreed to raise awareness and was the top recuiter to their cause on the Facebook Causes site, much of because well-meaning people seemed to see adding their names to this cause as somehow the "cool" thing to do to show their support and help abused children. Eventually, on Wednesday, March 21, I published my blog about this movement, targeting those who knew nothing about it and mainly with them in mind. I mentioned my concerns about the cost-effectiveness of all the awareness efforts of this movement and mentioned that the media was "hyping it up." I ended my blog with a challenge to people to not limit their help of abused children to involvement in this movement but to get involved on their own. I had provided the toll-free 24/7 child abuse hotline in conclusion. Proud of my effort, I erred in sending the link to this blog to the Founder as well as to the (now former) Public Relations person. This backfired almost immediately! For the following morning, I was aghast to see that the Public Relations (PR) person, who showed me much support, sent me an angry message, hitting me hard with this person's angry accusations about the blog's unfairness and bias and lack of background research. She referred to a few of my past posts, accusing me of of "snarky" expressions of "vitriol" toward the Founder. I couldn't send her a reply and saw that she had removed me from her friends list. Apparently, this PR person, in her anger, went back to the Founder, as this person totally blocked me on Facebook so that this Founder became invisible to me. My membership in this movement was abruptly terminated!
On my end, I have encountered many, many people who, in-person and online, have made it clear that they hold views that strongly oppose my views. Many months ago, I sent invites to many people, inviting them to see a video called "God's Love Letter." A person whom I sent the invite to, sent me a message saying, "Don't sent me religious stuff anymore. I don't do God." On Facebook, I have seen many posts defending gun ownership rights, especially in the wake of high-profile shootings. Because we are in the time of Presidential campaigns, on both my accounts, more and more people have made it public which Candidate they support or oppose, knowing, I'm sure, that they will offend many with opposing views. Myself, I have never ended relationships becaue of opposing views though I have lost many Facebook "friendships" over mine.
There is a Facebook cause and there are a few Facebook pages called "Spread the Word to End the Word," meaning stopping the practice of any future use of the word "retarded." "Homophobia" refers to fear and hate of anything in reference to homosexuals and homosexuality, but this word has been extended to saying anything negative about homesexuality and other related sexual orientation issues even out of one's deep religious convictions. Also, to emphasize the wrong of actually hurtful speech, we have coined the term "verbal abuse" and when it's done online, we call it "cyberbullying."
All of these examples and many more, refer to the question of how many free speech rights we are entitled to until they cross the line into speech that hurts others, even scars them for life. It seems that we all extol the virtues of the First Amendment until others exercise their own free speech to the point of offending us with their opposing views. So many friendships and other relationships have been harmed or severed because of the inability to respect the free speech rights of others or because of confusing free speech with with abusive speech. According to my research, the most common reason for Facebook "unfriendings," especially among women, are posts that they see as offensive, anything ranging from opposing political viewpoints to pornographic photos.
At home, when we have had our TV on political programming, frequently members of the opposing political party from the one our family supports, speak on talk shows and in campaign ads. And let me tell you, the name-calling can get heated! When members of the opposing party take opposing postions from those we hold dear, I will keep quiet, knowing these people have the same First Amendment rights that those of my own party do even though I DO NOT LIKE what they are saying. Others, though, seeing these positions as personal attacks on them, will often yell things like "Shut up!" and "We don't want to hear ANYTHING you have to say!" and attack the motives of the opposing party. While I have not indulged in name-calling this opposing party, I have (certainly in my thoughts) and aloud, have accused this party of wrong motives. But, even though politicians and their outspoken supporters say things that may anger us and offend us, must this always become a hostile shouting match? Even when people say things that offend us, whatever it's about, as long as what they say is respectful and clean, shouldn't it be considered as protected free speech? Yes, there are many times, at home, when we have taken offense when the opposing party has indulged in name-calling and verbally abusing our party, attacking our motives, indulging in hate and mean-spiritedness. Though it's so easy to attack the motives of those who oppose our deeply cherished views, especially in politics and religion, it shouldn't be done, as the opponents' view is just as real to them as ours is to us.
Then there's the matter of whether people have the right to hold postions on contoversial issues they aren't close to or can't relate to, personally. For example, very recently, in Congress, an all-male panel met to to discuss access to contraception for women vs. religious liberty; this has angered many woman, as no women served on this panel. Also, for months, politicians, all male, have been arguing for the need to limit women's access to contraception. The basis of female anger at all this is because this effort comes across as another effort at male dominance and "men telling women what to do with their bodies." This seems so offensive, in light of the fact that it's women's bodies that get pregnant and women who have to deal with pregnancy's consequences. In untimely pregnancies, it's usually the woman who has to make all the tough decisions (single-parenting, adoption, abortion) and then live with permanent consequences, regardless of the choice made. The arguments men make is that women's choices in contraception and pregnancy do affect them, especially when they learn about aborted children whom they had fathered and saw that they were left out of the decision-making process. Also, many men want to control the size of their families. Along the same lines on another issue, many parents resent advice from those who aren't raising children, forgetting that everyone has once been a child themselves. And so on and on with other issues. Lack of closeness to or experience of an issue doesn't mean that one can't have and express opinions on it, as long as the opinions are expressed with respect and without profanity.
Returning to the topic of my recent March 21 blog about the popular child abuse awareness movement and the consequences I experienced because of it, the PR person for this movement said that I had no right to opine about a topic that I had not researched. When I was drafting my blog, I searched the Founder's entire website, which I had visited multiple times and saw that it lacked most information needed for accountability and transparency. Over a week later, allegations against this Founder came out that were worse than my suspicions, which were based on this Founder's lack of transparency and accountability and the many posts on this Founder's Facebook page and business page, including personal "glamor shots" and apparent narcissism. The PR person for this movement announced on that person's business page the need to resign involvement in the movement though that person has never reconnected with me. Lesson? When we use free speech we need to be ready to take the consequences, which are often unwanted.
But many forms of speech clearly cross the line into abuse, because of profanity that distracts others from what we really want to say or or exploits others in the making of it, like pornography or wounds people emotionally. We have heard of many bullycides where kids were so hurt by relentless verbal bullying that they didn't want to live anymore. We have heard of many killers who have, in the past, viewed pornography or other such destructive material. And many break-ups and divorces happen because many partners and spouses are so hurt by chronic verbal abuse that they want out of the relationship. Words can indeed hurt, often for life.
Want free speech rights? Allow others to exercise theirs and use yours with clean language and with all respect.
I'm creating this blogspot to connect with you, share of myself in ways I can't on other social networking sites, raise awareness about issues that are important to all of us and to inform, enertain and inspire. Comments are always welcome and appreciated! To comment, hit "Comment" under any post. Photo Courtesy of John Sunderman
Saturday, April 14, 2012
Wednesday, April 11, 2012
Autism: Cure or Acceptance?
If you are not familiar with autism spectrum disorders and do not have a loved one, relative, or close friend with a known autism spectrum disoder, you may not be aware that there are two factions within the world of autism, among parents, professionals and individuals on the spectrum themselves. These two factions, who use entirely different models to make sense of autism, can vehemently oppose and even hate each other. This is bad enough to warrant Facebook groups with the mission to end bullying among those in the autism community.
What does this have to do with you who are not in this community? you may wonder. Well, one day you can have loved ones, relatives or close friends who may learn that they are on the autism spectrum and it will be an issue. The first faction are those who use the "autism is a disease and must be cured" model and the advocates for this model can be very impassioned in their efforts to push their agenda to find a "cure." These "cure" people view autism as a disease, like cancer or any other disease. They blame the sharply rising incidents of autism spectrum disorders, including higher-functioning subtypes like Asperger's Syndrome and Pervasive Development Disorder--Not Otherwise Specified (PDD--NOS) to vaccine toxicity. This also includes the more severe, classic autism which has been diagnosed for a much longer time. They blame what they see as the poorly, badly-timed administration of vaccines to babies in recent decades. They see autistic children as needing to be "rescued from" autism so it can be "wiped out" and defeated and this aim permeates any approach they take in interventions for autism children, including medications, special diets, behavioral therapy, sensory integration therapy, or other programs. The goal is to get these children to "grow out of" their autism and become "normal." It seems that the majority of nonprofits use the "cure" model to understand autism and target children, teens and maybe young adults. These nonprofits include Autism Speaks, Defeat Autism Now!, Generation Rescue, Age of Autism and others. In many counties in the US (not to mention outside the US), doctors and other professionals operate practices and clinics that use the "cure" model, medicalizing autism and offering medical procedures in the effort to cure their autistic patients. I have a number of issues with this "cure" modeal. First, there's little clear or convincing evidence that vaccines play much role in causing autism. The "cure" model fails to take into consideration the fact that professionals simply diagnose children today with Asperger's Syndrome or with PDD--NOS, who would have been diagnosed with other mental health or learning difference labels. For this same reason, this "cure" model dismisses the issues and needs of so many adults like myself, who grew up with clusters of differences that would have come under the autism spectrum disorders umbrella had we grown up today. Also, it seems that so many of these interventions are financially-motivated, rasing the hopes of desperate, vulnerable families who yearn for a cure for what they see as a terrible disease.
I sympathize with the families of those who see autism, especially the more severe, classic autism, as a tragedy and who place all their hopes in anything or anyone who promises them a "cure." It is more difficult for such families to use the "acceptance" model to understand autism, I'm sure. The acceptance model contrasts with the cure model that more and more people in the autism community seem to be using. The "acceptance" people realize that autism, including its higher-functioning subtypes like Asperger's Syndrome and PDD--NOS, is a neurological disorder that affects the way that people see and relate to themselves, others and the world and that this doesn't have to be a tragedy. They hold that the real tragedy lies in society's prejudice, intolerance, ignorance and failure/refusal to accomodate these differences in autism, that make life so difficult for children and adults with autism. These parents and professionals focus on getting a child to control and modify the characteristics of autism rather than to "grow out of it." The acceptance model focuses on the strengths of the autistic individual while working with them to overcome their challenges. Many adults with autism, who realize that they are still autistic and always will be in this life, subscribe to the acceptance model. The "cure" model's biggest flaw, in my opinion and that of many others, is that this model refuses to see that children with autism become adults with autism, however controlled and modified their autistic trats may become. The one nonprofit that clearly uses the acceptance model is the Global Regional Asperger's Syndrome Partnersip (GRASP), a nonprofit that comprises many adults with autism and serves teens and adults with autism. The "acceptance" people vehemently oppose the idea that autism is a disease in need of a cure and that such a view is an insult to autistic people. They don't see autism as a disability but as a difference that moves many to have formed an autistic subculture, much like many deaf people use the sign language of their countries and have formed Deaf subcultures.
The anger and hostility that these two factions level at each other can be bitter. Months ago, a person in my social network, on Facebook, was venting her frustration with seeing lots of posts by those who liked to showcase the hard-won accomplishments of higher-functioning people on the spectrum. This person has a child with more severe, classic autism, strongly adheres to the "cure" perspective of autism and is an advocate for families with more severely autistic individuals. She posted something along the lines of, "I'm sick and tired of seeing posts about what those with Asperger's can do! What about our kids with classic autism? You never hear about this kind of autism. What is inspiring about THIS form of autism?" This person realizes that the many issues facing families such as hers are indeed real, troubling and devastating but this person fails to see that the issues facing those with higher-fuctioning autism, while different, are just as troubling, devastating and real.
Over a year ago, when I added a certain person to my network of friends on Facebook, this person made it clear that my position in this person's network would be endangered if I showed support for Autism Speaks, Age of Autism or Generation Rescue. Over the following days, I saw this person post, "I'm deleting anyone who feels that autism is a disease in need of a cure or supports Autism Speaks, and I don't feel bad about it." I understand how this person feels, but with all the challenges facing those in the autism community, particularly from society, shouldn't we set aside our differences and accept each other, even if we may dislike, even detest each other's views?
At another time, I would visit a blogspot that the person, who has a child with autism, maintained and which covered issues specific to autism. This person's normally targeted other parents, their issues and concerns. At one point, this blogger departed from this person's usual format and invited adults with autism to share their stories, wanting to give them a voice. She posted blogs by autistic adults for awhile. One day, I visited this person's blogspot and this person stated frustration with readers with children with autism and their bullying of the adults whose blogs this person had posted. This person posed these questions, along these lines: "Parents, one day your children with autism will become adults with autism. Think about the world they will face if future parents take your attitudes. When you model the hate you have in your comments and responses to these adults with autism, what kind of world are you modeling for your children?"
In literature for autism and on at least one more autism blogspot, writers have expressed concern that adults, in calling for the world to accept them and accommodate them, defeat their cause by expressing anger and rage at an unwelcoming world. A couple of writers have stated that they believe that the autism subculture is "overdone" and that they prefer to identify with the larger society and adhere to its rules.
Clearly, these two perspectives can't be merged and in the free world, it's acceptable to hold to whatever view of autism you feel most comfortable with, as long as each side makes the effort to respect the other side and set aside these differences when needed.
http://www.info.com/WhatAutismis/
This is a site that leads to many other sites where you can educate yourself about autism and autism issues.
What does this have to do with you who are not in this community? you may wonder. Well, one day you can have loved ones, relatives or close friends who may learn that they are on the autism spectrum and it will be an issue. The first faction are those who use the "autism is a disease and must be cured" model and the advocates for this model can be very impassioned in their efforts to push their agenda to find a "cure." These "cure" people view autism as a disease, like cancer or any other disease. They blame the sharply rising incidents of autism spectrum disorders, including higher-functioning subtypes like Asperger's Syndrome and Pervasive Development Disorder--Not Otherwise Specified (PDD--NOS) to vaccine toxicity. This also includes the more severe, classic autism which has been diagnosed for a much longer time. They blame what they see as the poorly, badly-timed administration of vaccines to babies in recent decades. They see autistic children as needing to be "rescued from" autism so it can be "wiped out" and defeated and this aim permeates any approach they take in interventions for autism children, including medications, special diets, behavioral therapy, sensory integration therapy, or other programs. The goal is to get these children to "grow out of" their autism and become "normal." It seems that the majority of nonprofits use the "cure" model to understand autism and target children, teens and maybe young adults. These nonprofits include Autism Speaks, Defeat Autism Now!, Generation Rescue, Age of Autism and others. In many counties in the US (not to mention outside the US), doctors and other professionals operate practices and clinics that use the "cure" model, medicalizing autism and offering medical procedures in the effort to cure their autistic patients. I have a number of issues with this "cure" modeal. First, there's little clear or convincing evidence that vaccines play much role in causing autism. The "cure" model fails to take into consideration the fact that professionals simply diagnose children today with Asperger's Syndrome or with PDD--NOS, who would have been diagnosed with other mental health or learning difference labels. For this same reason, this "cure" model dismisses the issues and needs of so many adults like myself, who grew up with clusters of differences that would have come under the autism spectrum disorders umbrella had we grown up today. Also, it seems that so many of these interventions are financially-motivated, rasing the hopes of desperate, vulnerable families who yearn for a cure for what they see as a terrible disease.
I sympathize with the families of those who see autism, especially the more severe, classic autism, as a tragedy and who place all their hopes in anything or anyone who promises them a "cure." It is more difficult for such families to use the "acceptance" model to understand autism, I'm sure. The acceptance model contrasts with the cure model that more and more people in the autism community seem to be using. The "acceptance" people realize that autism, including its higher-functioning subtypes like Asperger's Syndrome and PDD--NOS, is a neurological disorder that affects the way that people see and relate to themselves, others and the world and that this doesn't have to be a tragedy. They hold that the real tragedy lies in society's prejudice, intolerance, ignorance and failure/refusal to accomodate these differences in autism, that make life so difficult for children and adults with autism. These parents and professionals focus on getting a child to control and modify the characteristics of autism rather than to "grow out of it." The acceptance model focuses on the strengths of the autistic individual while working with them to overcome their challenges. Many adults with autism, who realize that they are still autistic and always will be in this life, subscribe to the acceptance model. The "cure" model's biggest flaw, in my opinion and that of many others, is that this model refuses to see that children with autism become adults with autism, however controlled and modified their autistic trats may become. The one nonprofit that clearly uses the acceptance model is the Global Regional Asperger's Syndrome Partnersip (GRASP), a nonprofit that comprises many adults with autism and serves teens and adults with autism. The "acceptance" people vehemently oppose the idea that autism is a disease in need of a cure and that such a view is an insult to autistic people. They don't see autism as a disability but as a difference that moves many to have formed an autistic subculture, much like many deaf people use the sign language of their countries and have formed Deaf subcultures.
The anger and hostility that these two factions level at each other can be bitter. Months ago, a person in my social network, on Facebook, was venting her frustration with seeing lots of posts by those who liked to showcase the hard-won accomplishments of higher-functioning people on the spectrum. This person has a child with more severe, classic autism, strongly adheres to the "cure" perspective of autism and is an advocate for families with more severely autistic individuals. She posted something along the lines of, "I'm sick and tired of seeing posts about what those with Asperger's can do! What about our kids with classic autism? You never hear about this kind of autism. What is inspiring about THIS form of autism?" This person realizes that the many issues facing families such as hers are indeed real, troubling and devastating but this person fails to see that the issues facing those with higher-fuctioning autism, while different, are just as troubling, devastating and real.
Over a year ago, when I added a certain person to my network of friends on Facebook, this person made it clear that my position in this person's network would be endangered if I showed support for Autism Speaks, Age of Autism or Generation Rescue. Over the following days, I saw this person post, "I'm deleting anyone who feels that autism is a disease in need of a cure or supports Autism Speaks, and I don't feel bad about it." I understand how this person feels, but with all the challenges facing those in the autism community, particularly from society, shouldn't we set aside our differences and accept each other, even if we may dislike, even detest each other's views?
At another time, I would visit a blogspot that the person, who has a child with autism, maintained and which covered issues specific to autism. This person's normally targeted other parents, their issues and concerns. At one point, this blogger departed from this person's usual format and invited adults with autism to share their stories, wanting to give them a voice. She posted blogs by autistic adults for awhile. One day, I visited this person's blogspot and this person stated frustration with readers with children with autism and their bullying of the adults whose blogs this person had posted. This person posed these questions, along these lines: "Parents, one day your children with autism will become adults with autism. Think about the world they will face if future parents take your attitudes. When you model the hate you have in your comments and responses to these adults with autism, what kind of world are you modeling for your children?"
In literature for autism and on at least one more autism blogspot, writers have expressed concern that adults, in calling for the world to accept them and accommodate them, defeat their cause by expressing anger and rage at an unwelcoming world. A couple of writers have stated that they believe that the autism subculture is "overdone" and that they prefer to identify with the larger society and adhere to its rules.
Clearly, these two perspectives can't be merged and in the free world, it's acceptable to hold to whatever view of autism you feel most comfortable with, as long as each side makes the effort to respect the other side and set aside these differences when needed.
http://www.info.com/WhatAutismis/
This is a site that leads to many other sites where you can educate yourself about autism and autism issues.
Subscribe to:
Posts (Atom)