Thursday, September 24, 2009

Rethinking Autism - Thank YOU!

I came across another video today which was produced by Rethinking Autism and this is one I think should be seen everywhere.

Rethinking Autism (not to be confused with Rethink Autism - that's another group of people) was started by a mother of an autistic boy who has had enough of the quackery and pseudoscience and quite possibly other things as well.

I challenge everyone out there to "Rethink Autism" and take a positive stance to raising awareness... for the good of all on the spectrum and the people who love them.

Pleasant Reading: An Interesting Article from the New York Times - In Praise of Autism

Well, on the day that I see the most demeaning video about autism that I have ever seen, this little article gets posted in the New York Times!

It's the "Idea of the Day" dated... September 23. The same day the video made waves in the autism community. The article is below:

Today’s idea: Autistics deserve better appreciation for their contributions to higher learning, one article says. And they should be recruited in information technology because they have “a preternatural capacity for concentration and near-total recall,” another says.

Does it make any difference that these autistics may be considered high functioning and not worth appreciating?

Should it?

Thank you, Tom Kuntz and other New York Times writers who put together the "Idea of the Day" articles.

This could not have come at a better time.

Wednesday, September 23, 2009

The Latest Propaganda from Autism Speaks and My Reponse

I think it may be time for yet another letter-writing campaign...

Back in August, Autism Speaks (who does not speak for us, as we all have been shown time and time again) put out a call for video submissions. It seemed pretty positive with the "Shine a Bright Light" wording and I'm sure many sent in submissions.

What came out of it was this video by Academy Award-nominated director Alfonso Cuarón and Grammy-nominated songwriter/producer Billy Mann.

It is very disturbing to those of us on the spectrum since it is directly hateful and demonising. How many parents who submitted videos knew that this was the message that was going to be delivered with their home videos?

The full transcript is at Codeman38 if you do not want to watch it. (Thanks to Codeman38 for sitting through the video and transcribing it!)

An excerpt from the transcript:

man: I am autism. I'm visible in your children, but if I can help it, I am invisible to you until it's too late. I know where you live, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language. I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don't sleep, so I make sure you don't either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don't have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don't exist, of course, until it's their child. I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?' And the truth is, I am still winning, and you are scared, and you should be. I am autism. You ignored me. That was a mistake.

Why is this so offensive to me? I challenge you to take the word "autism" out and substitute it with your own name and see how you feel about it. That is how I see it. I am autistic and I take this very personally! They might as well have put my name or the names of any autistic people that you may know or love or be in there instead of the word autism!

I realize that these folks feel that there needs to be more awareness raised about autism. That's great. I realize that this is what it is like for many people who have to live with someone on the spectrum. I get that. I'd get that even without the hate spewing, though.

It's not like people don't know what autism is by now, so perhaps we could ease off on the hate propaganda and start being more objective, constructive and (dare I say it...) productive?

Or is Autism Speaks perhaps too limited by their inability to go beyond black and white thinking, lack of willingness to understand the world around them and lack of empathy towards those of us on the spectrum and our families? (You may have recognized a few so-called symptoms of autism in my last statement... that was intentional)

I'm sure that's just what parents with newly diagnosed children need: hate propaganda and a terrible outlook for their kids. (Sarcasm)

Here is my rewrite of the script to match exactly how I feel right now:

man: I am Autism Speaks. I'm making the future of your children a dark one of hate and misunderstanding, but if I can help it, it will be invisible to you until it's too late. You won't know why your children are being beaten up at school or why no one wants to associate with you or your kids until it's too late!

I know where you live, and guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language as a parent fluently, and with every voice/opinion of an autistic person I take away or invalidate, I acquire yet another language.

I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined. And if you are happily married, I will make sure that your marriage fails because of the negativity I spread like a cancer in your minds about your child's medical condition.

Your money will fall into my hands and the hands of those unethical people who will squeeze you dry just to force your child to act normal or undergo treatments that could be fatal, and we will bankrupt you for our own self-gain.

I don't sleep, so I make sure you don't either. I will make it seem like it is virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain because I have planted the seeds of hatred toward your child in your minds! You have no cure for me. I am too rich and powerful for you or anyone else to fight. I am a mega-charity. Scientists don't have the resources, and I relish their desperation. As long as they aren't doing any good for autistic people, I am still making money by giving you false hope that we are funding research and not hate.

Your neighbors are happier to pretend that autism doesn't exist, of course, until it's their child. If their children are diagnosed, well, I will plant the seeds of hate in their minds too. I am Autism Speaks. I have no interest in right or wrong nor in the actual well-being of your children. I derive great pleasure out of your loneliness and make money off it too! I will fight to take away your hope and will continue to spew out messages like this until you are so broken, you see me as your only hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up, you will cry, wondering 'who will take care of my child after I die?' because I will continue to place the seeds of helplessness in your mind and not make any effort to help you help your child make a difference in the world.

And the truth is, I am still winning, and you are scared, and you should be. I am Autism Speaks. You ignored me. Autistic people have fought against me. That was a mistake and I will get them back for that by making sure their futures are bleak because of the hatred people will have for them.

Autistic woman: And to Autism Speaks, I say...
Autistic man: I am a father...
Autistic woman: A mother...
Autistic woman: A grandparent...
Autistic man: A brother...
Autistic woman: A sister...
Autistic man: We will spend every waking hour trying to weaken you and invalidate your message of hate.
Autistic woman: We don't need sleep, because we will not rest until you do.
Autistic woman: Family can be much stronger than Autism Speaks ever anticipated, and we will not be intimidated by you...
Autistic woman: ...nor will the love and strength of my community.
Autistic man: I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autistic woman: Autism Speaks? You forget who we are. You forget who you are dealing with. You forget the spirit of mothers...
all Autistics : ...and daughters, and fathers, and sons...
(crosstalk: several people calling out "We are" and the names of different countries)
all Autistics: We are the United Nations.
Autistic man: We are coming together in all climates.
Autistic woman: We call on all faiths.
Autistic woman: We search with technology...
Autistic woman: ...and voodoo...
Autistic woman: ...prayer and...
Autistic man: ...campaigns and...
Autistic man: ...videos of our own...
Autistic woman: ...and a growing awareness and desire to raise that awareness that you never anticipated.
Autistic man: We have challenges, but we are the best when we are allowed to have control over them.
Autistic woman: We speak the only language that matters:
all Autistics: Love for our children and love for ourselves.
Autistic woman: Our capacity to love is greater than your capacity to overwhelm, but you cannot see that and your force others to not see just how much love we have.
Autistic woman: Autism Speaks is naive.
Autistic woman: You are misinformed and ignorant.
Autistic man: We are a community of warriors.
all Autistics: We have a voice, even if it is different from yours. We are not stupid either. We know what you say to our families to get them to hate us.
Autistic woman: You think that because some of us cannot speak, people cannot hear them and that we have no thoughts, opinions or things to say. That is Autism Speak's weakness and fallacy.
Autistic woman: You think that I live behind a wall, and that people are afraid to knock it down with their bare hands. You could not be more wrong. People don't need to break down the wall, just accept who I am and open the lines of communication... something you do not seem to advocate. I am open to communication if you are willing to take the effort to try and meet me half way.
Autistic man: You have not properly been introduced to this community...
all Autistics: ...of parents and grandparents, of siblings and friends, workers, thinkers, and scientists.
Autistic woman: Autism Speaks, if you are not scared, you should be.
man: When you attacked autistic people, you forgot:
all Autistics: You came for me.
Autistic woman: Autism Speaks: Are you listening?
Me: Of course not... but perhaps it's high time you did.

I'm angry, offended and disgusted... but I am not surprised.

Time to draft a letter...

Sunday, August 16, 2009

One for the "Enough Already!" Department: A Rant about more Negative Press...

Warning: this is a rant post, so if you're not up to reading a rant, please stop reading now.

Ok.... apparently we've got a national emergency, folks!*sigh* This time it's Autism York pressing the panic button in the name of "autism Awareness". (And they're using those irritating puzzle pieces to boot... but I won't go there... oh no I won't! My blood pressure will rise to dangerous levels if I do.)

Image and story courtesy of the Club 166 Blog
http://club166.blogspot.com/2009/08/could.html


The person who writes the Club 166 blog is Joe, a father of a child on the autism spectrum and he mentioned how he didn't want his children "exposed to such trash". I couldn't agree with him more!

Now on to my rant:

Despite what level of ability an autistic child has (extreme low functioning or very high functioning), this type of advertising is demeaning, promotes fear, misunderstanding and doesn't really help parents who may already have enough things to deal with on a daily basis than having their child compared to a kidnap victim. Is this how you would like another condition described? Diabetes? Downs Syndrome? Spina Bifida? Asthma? How would those kids feel?

As I've said here before, I've worked with victims of crime and this is also offensive to those who've suffered at the hands of people who really have abducted them and done terrible things to them.

Do people not think before putting such ads up?? Do they not see what kind of damage they are causing? Don't they get it yet?

Do they perhaps need an ABA therapist to say to them a few times "How would you like it if this is how societies were describing *you* or a medical condition that you have?"

Did you know that you can still raise awareness about autism without that kind of advertising?

Did you know that people will still know about autism and donate or whatever it is you want them to do without making autism look like the end of the world?

Quite a few agencies do it.... even autism ones.

Examples:

Autism Calgary Association - "Vision: Individuals with Autism Spectrum Disorder (ASD) living meaningful and purposeful lives in a community that values them."

Autism National Committee (AutCom) - "dedicated to "Social Justice for All Citizens with Autism" through a shared vision and a commitment to positive approaches. Our organization was founded in 1990 to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior."

Autism Society of Michigan - "The mission of the Autism Society of Michigan (ASM) is to assure full participation and self determination in every aspect of life for each individual. We will realize this vision by opening avenues of self advocacy and advocating on behalf of others in a way that values equity, respect, dignity and diversity in all communities. ASM is committed to empowering individuals with autism and their families by offering educational resources and materials, workshops, seminars and other services. ASM advocates that "Making Human Connections" in a supportive, integrated community is a right of all persons."

Autism Society of Edmonton Area - "The Autism Society of Edmonton Area (ASEA) is a non-profit organization founded in 1971 by a concerned group of parents and professionals. ASEA helps families and communities embrace and support people on the autism society throughout their lives."

It is possible!

If someone were to post an ad like this about a religion, a race or a philosophy "kidnapping" people and being a "national emergency", what would it be called?

Don't know?

Well, I'll tell you what it would be called: Hate propaganda.

Hate and propaganda. Nasty words, aren't they? They're even nastier when put together and we have many examples of how this kind of thing has not benefited people in human history, don't we?

What makes it right to publish or post hate propaganda at autism or autistic people? This is part of the reason why the word autism makes my skin crawl. Isn't that awful? A person should never be brought to the point where they cringe at a word that describes a medical condition. I don't cringe when I say I have IBS or a thyroid issue. I don't have to hide that from my boss or the rest of my community.

I do have to hide the A word from them and I feel a sense of shame and disgust when I hear that word. I would likely have more acceptance if I said I was gay or something!

Why?? Why should I be ashamed? Why should I hide in "the closet"? Why should I hide it? That comes from many, many years of seeing autism described as the end of the world, a fate worse than death, wrong, worse than bird-flu and cancer, etc. and I'm sure I'm not the only autistic who feels that way.

Hate is not a family value, nor is it one that should be used to raise awareness about anything. It does no one any good!

Yes, autism is frustrating for us all... those of us who have to live with the joys of being autistic, parents and families that have to put up with the frustration of having a child that doesn't communicate or behave the way they do, and many more people I'm sure. It's not fun. It's not a picnic. It's also not the end of the world.

Does it deserve hate propaganda? Do autistic people deserve to have these ads pointed at them in attack? Do parents really need more of this negative crap to deal with?

Common sense, some courtesy and a thought about how this may be affecting other. That's all I'm asking for.

Back to Joe for a moment. He wrote this letter which I think would be of benefit for folks to see:

Dear Sirs/Madams:

As the father of a child on the autism spectrum, I am writing to express concern about the York, PA ASA chapter’s billboard campaign that associates autism with being kidnapped. I happened to notice one of your billboards while taking a vacation in Pennsylvania. This campaign is reminiscent of the 2007 Ransom Notes campaign that was undertaken (and subsequently removed) by the NYU Child Study Center in New York City.

Comparing people with autism to those who are kidnapped is not only factually wrong (my son hasn’t been kidnapped, he’s right here in front of me), but is demeaning and offensive to those who are autistic. Rather than “creating awareness”, I can only see the logical end result of such an ad campaign be one of creating fear, misunderstanding, and disrespect towards those who are autistic.

In Medieval folklore the image of a changeling was used to describe children with then misunderstood medical disorders or developmental disabilities. Fairies or trolls were thought to have kidnapped the “normal child” and left the changeling in its place. One would think that in the 21st century we could get past such folklore, and deal with reality.

Putting up ads that show such disrespect towards autistics will certainly not result in greater acceptance and integration in either the school environment or the community. As an organization that ostensibly has been set up to serve the needs of the autistic community, I urge you to immediately remove the ads. Furthermore, I strongly encourage you to consult with autistic self advocates before formulating future ad campaigns.

Thank you for your time, and I hope to hear from you soon.

More on this ad campaign from an autistic point of view:

Did you think we'd seen the last of billboards describing autistic children as kidnap victims when the Ransom Notes ads were taken down in 2007? Well, as Joe just blogged, there's plenty more of the putrefying stupid where that came from. This time, the culprit is the York, PA chapter of the Autism Society of America. E-mail address is pa-york@autismsocietyofamerica.org and the chapter president is Amy Wallace. Time to let her know what we think of that tired old stolen child changeling garbage.

The good news is that Autism York has 'seen the error of its ways' thanks to some notes written to them by parents and autistics alike and are going to pull the billboards. (See the response Joe got below):

Dear Friends in the Autism Community,

Regretfully it has been brought to the attention of the Autism Society of America – York Chapter – that our recent billboard campaign has caused undesirable confusion within the community. The intention of the billboard campaign was aimed at generating awareness to the general public and was in no way created to cause a malicious stir within the community. As a parent of a severely affected nine year old with Autism I can truly understand your passion regarding advocacy and respect for our children.

We thank you for your thoughts and concerns. I apologize for the misunderstanding and want you to know we will promptly remove the billboard posting.

Respectfully yours,

Amy Wallace

President ASA York

Anyway, it's 1:47 in the morning and I have to get up for work in the morning, so I'm signing off here.

Just when it looks like people are getting it, more of this stuff shows up. Two steps forward, one step back...

Monday, August 10, 2009

A response to a comment about "Finally! Somebody Gets It!"

A very good comment was made a few weeks ago to my post, "Finally! Somebody gets it!" and I think it deserves more merit than just being relegated to the comments corner where people might never see it. Some excellent points are made about the autistic spectrum and the lack of appropriate or even helpful supports to parents dealing with severely autistic children who are unable to speak, etc.

Most importantly, this comment perfectly voices the terrible fears and frustrations that many parents feel. Even my own parents found the "system" frustrating.. and me even more so, I'm sure! They've said that they often "felt alone" in their battle and I'm sure many, many other parents feel this way too.

Parents and families need to be heard as much autistics do, in my opinion. And those professionals and societies really should start listening! Do families need more gloom and doom, or do they need something from these folks that actually helps? Is there not enough fear, uncertainty and frustration in their lives without all that? Negativity spreads... to the parents and ultimately to the people at the business end of the treatments: autistic people.

Some parts of the comment seem to be accusatory (with regards to the evolution opinion, etc.) and I have addressed them.

The original comment:

Dr Fitzgerald's book is frightening. He pretty much writes... they'll amount to nothing, don't do anything, let's just let them be and evolve.... I think that's as damaging and anything Jenny writes. I don't like either of them.

On the HFA end of the spectrum Autism is "ok". We've managed it. He'll be as "normal" as the next person.... actually at nearly 10yrs he already is.

The other end is frightening. Frightening when you just can't get through to them. Frightening when you wonder what you're doing wrong. All the support in the world doesn't help. Actual suggestions that work to make communication between parent and child happen is what is needed.

ABA did go through the wall... totally by fluke... she signed "all done" told him to "do this" mimick it and took away his book. He said "no" and slapped his hands together in "all done". After that instead of mimicking they taught him correct signs and pec's for objects b/c that's what we'd been working on for the prev 18mths.

Otherwise.. ABA was a disaster.

Those autistics that can write, speak, hold jobs and marry tend to refuse to acknowledge the fear that parents with children on the severe end of the spectrum have. Parents of those children on the upper end of the spectrum do the same. Until you live my life.... don't cast stones.... and extra support doesn't stop the fear.


Since my response was too darned long for Blogger to post as a response to a comment, I am posting it here:

I agree: All the support in the world will not cure the problem. It may not make the person any less autistic... and to be perfectly frank, it never will. That autistic person is who he or she will always be. No amount of *anything* is going to change that unless that person can make that change!

However, support can certainly help make life easier... *if* the support is the right type of support! Many of the "supports" out there are inappropriate because the full scope of autism is not known. That is really bothersome since it isn't doing families or autistics any favours.

You have probably experienced this first hand and are rightfully frustrated!

How do you effectively treat something you don't understand in its entirety? You can't and that is the root of the problem!

Yes, you are right that communication between parent and child is needed...so badly needed! However, if it's not there, what do you do? Some people have tried facilitated communication or even just teaching a child to type. Many autistics who type the most amazing things cannot care for themselves and are in care homes or have caregivers working in their homes. Some can't go to the toilet on their own. Some cannot speak at all. Writing does not equal "high functioning". It just means the person has a way to communicate.

Communication is a difficult thing. How do you connect? I wish I had the answers. I don't know your children the way you do.

Can you please provide some possible solutions to your woes or the woes of parents with severely disabled children?

Even just a wish list of what you'd like to see, do or have done by someone else? Go wild with this since you may have an insight no one's thought of because you might think "Oh, it's too silly or impossible to actually happen". It might actually *be* possible!

What service would provide you and your children with exactly what you need?

Do you have any answers for those of us who need to understand?

I open the floor to you now. Please make some suggestions! Please make the world understand what it is you *need*.

People need to know these things so they can actually be a help and not a hinderance.

Now on to some of the more digging parts of the comment:

First off, I never will believe that autism is the next step in evolution. Other autistics who speak up for autistic rights and I have been accused of this repeatedly and I am going to put a stop to it here right now,

Sure, I've entertained the idea from time to time but have found it to be fallacious and fanciful. (You know, the "What if...?" factor) It's interesting that this comes up, because someone mentioned it on a newsgroup today!

If what I have is "evolution", then I really wonder where the human race is going. Seriously. Sure, I'm smart and sure I do a lot of things NT's can't. But I would also like to not be so hypersensitive, feeling ill all the time and able to fit in better.

However, autism didn't just magically "appear" in the 1940's when Leo Kanner and Hans Asperger were making their discoveries. They just "noticed" that some kids had some very different traits and wrote papers about them. In fact, Asperger wrote his papers so that the government would not decide these children were disordered burdens and therefore not "eliminate" them as was happening in his country at that time. Personally, I believe that autism has been around for a long time.


I know some high functioning people do believe this but I am not one of them. For me, autism is not evolution and it's not fun either. Perhaps they see something I don't or need to make themselves feel better. I don't know.

I don't how much more clear I can be on this ...

With regard to the comment that HFA's that "write, speak, hold jobs and marry tend to refuse to acknowledge the fear that parents with children on the severe end of the spectrum have", I almost get the feeling that this is a personal dig against me since I can do all of those things. The written word is difficult because I cannot fully see or feel the emotion behind it. You may not be attacking me at all. I'll assume that it is just general frustration at a system that is not working out too well more than a personal attack against me (please correct me if I'm wrong).

However, I should make it *very clear* that I do not discredit those folks at all. In fact, I can try to understand their frustration as best as I can.

I recognize that autism is a spectrum condition - that means that there is a scale between severe and mild autism spectrum disorders. I know that not every autistic has the same abilities or disabilities (I've said that enough times in my blog).

I try to do that with my blog (express my needs). Yes, I'm high functioning, but I also have my frustrations, difficulties and woes. I use this medium to complain, but I also try to provide some input on what I need, what others might need based on discussions I've had with other autistics.

That's why this blog is here. However, this is just a blog... an electronic means to express personal opinions on subjects, not a medical journal or a scientific forum. It is not meant to provide all the answers. Just insight if people want to read it. It may be totally useless for some, but very helpful for others.

I try to be as well-researched as possible because I think autistics deserve that much at the very least.

Yes, I am high functioning, and perhaps that invalidates my opinions in your eyes. Perhaps that makes some folks think that I can't possibly understand what it's like to be autistic. Do non-autistics know what it's like to be autistic? Do autistics know what it's like to not be autistic?

How can anyone invalidate another if one doesn't even know? How can I invalidate you when I don't know you? We're in the same boat here.

"Until you live my life, don't cast stones", you say. For the record, I have not cast any stones at you. This post may even seem a little "stoney" and I apologize but I did have to make some things clear since they've been brought up more than once (i.e.: evolution and HFA's not knowing what it's like for parents with LF children).

Until you live my life as an autistic person who has to put up with a lot of discrimination, misinformation, inappropriate/traumatic treatments and such, I ask you respectfully to please not cast stones at me either.

To be honest, I don't think a negative attitude really helps folks who are severely autistic (or anyone for that matter), do you? Do you believe negative attitudes help to make life easier for the parents *or* children?

I would rather have more genuine support than negativity in my life, but that's just me.

Negativity does not stop the harm that is done to many of us on a daily basis. Nor does it help frustrated families reach their children or find peace for themselves. It's only fuel for the fire.

What is needed everywhere, in my opinion, is open communication of what is needed for all and recognition of the spectrum that autism is so that everyone can work together to find the causes and proper supports, treatments, etc.

Respectfully,

DJ

Bill C-384 - An objective look at a hot topic among some disability rights groups

The latest buzz on Facebook among Canadians, it seems, is a new bill put before Parliament which would amend the Canadian Criminal Code with regards to Medical Euthanasia. (Currently, any type of euthanasia on a human being is illegal by Canadian Law) Naturally, the idea of the “right to die with dignity” is a very, very hot topic.

My first resort in the face of such a hot topic is to seek facts, so I tried to find this bill on Google. Right away, the search engine displayed many websites set up in opposition to the bill, but not the bill itself. Plenty of emotion and very little fact is out there to be seen, which motivated me to start researching and writing. I find that many opinions on such sensitive topics are emotionally based, reactionary and prone to various types of fallacy (particularly opposing opinions), which I think does a disservice to both sides of the argument.

The purpose of this essay is not to take a definite position either for or against this bill, but to examine the arguments made against it and how they stand up to the actual wording of the bill. I am “playing Devil’s Advocate” because I have not found any really compelling arguments in favour of this Bill, which skews the argument in one direction in my opinion.

After some digging, I did find the actual Bill and I am going to provide the link and provide the word for word bill below first so that it can be referred back to if needed.

Link to the Government of Canada website where the bill is posted: http://www2.parl.gc.ca/HousePublications/Publication.aspx?Docid=3895681&file=4

The actual wording of Bill C-384 (1):

C-384
Second Session, Fortieth Parliament,
57-58 Elizabeth II, 2009
HOUSE OF COMMONS OF CANADA
BILL C-384
An Act to amend the Criminal Code (right to die with dignity)
________________________________________
FIRST READING, MAY 13, 2009
________________________________________
MS. LALONDE
402101

SUMMARY
This enactment amends the Criminal Code to allow a medical practitioner, subject to certain conditions, to aid a person who is experiencing severe physical or mental pain without any prospect of relief or is suffering from a terminal illness to die with dignity once the person has expressed his or her free and informed consent to die.

Also available on the Parliament of Canada Web Site at the following address:
http://www.parl.gc.ca

2nd Session, 40th Parliament,
57-58 Elizabeth II, 2009
HOUSE OF COMMONS OF CANADA
BILL C-384

An Act to amend the Criminal Code (right to die with dignity)

R.S., c. C-46 Her Majesty, by and with the advice and consent of the Senate and House of Commons of Canada, enacts as follows:

1. Section 14 of the Criminal Code is replaced by the following:

Consent to death 14. Subject to subsections 222(7) and 241(2), no person is entitled to consent to have death inflicted on him or her, and such consent does not affect the criminal responsibility of any person by whom death may be inflicted on the person by whom consent is given.

2. Section 222 of the Act is amended by adding the following after subsection (6):

Exception
(7) Despite anything in this section, a medical practitioner does not commit homicide within the meaning of this Act by reason only that he or she aids a person to die with dignity, if
(a) the person
(i) is at least eighteen years of age,
(ii) either
(A) continues, after trying or expressly refusing the appropriate treatments available, to experience severe physical or mental pain without any prospect of relief, or
(B) suffers from a terminal illness,
(iii) has provided a medical practitioner, while appearing to be lucid, with two written requests more than 10 days apart expressly stating the person’s free and informed consent to opt to die, and
(iv) has designated in writing, with free and informed consent, before two witnesses with no personal interest in the death of the person, another person to act on his or her behalf with any medical practitioner when the person does not appear to be lucid; and
(b) the medical practitioner
(i) has requested and received written confirmation of the diagnosis from another medical practitioner with no personal interest in the death of the person,
(ii) has no reasonable grounds to believe that the written requests referred to in subparagraph (a)(iii) were made under duress or while the person was not lucid,
(iii) has informed the person of the consequences of his or her requests and of the alternatives available to him or her,
(iv) acts in the manner indicated by the person, it being understood that the person may, at any time, revoke the requests made under subparagraph (a)(iii), and
(v) provides the coroner with a copy of the confirmation referred to in subparagraph (i).

Definition of “medical practitioner”
(8) For the purposes of subsection (7), “medical practitioner” means a person duly qualified by provincial law to practice medicine.


3. Section 241 of the Act is renumbered as subsection 241(1) and is amended by adding the following:

Exception:
(2) A medical practitioner is not guilty of an offence under this Act by reason only that he or she aids a person to commit suicide with dignity, if
(a) the person who commits suicide meets the conditions set out in paragraph 222(7)(a); and
(b) the medical practitioner meets the conditions set out in paragraph 222(7)(b).

Definition of “medical practitioner”
(3) For the purposes of paragraph (2), “medical practitioner” means a person duly qualified by provincial law to practice medicine.

Published under authority of the Speaker of the House of Commons
________________________________________
Available from:
Publishing and Depository Services
Public Works and Government Services Canada

________________________________________________________________

Upon reading the bill in its entirety, I then started to look at the opinion sites to see what kinds of arguments are being made for or against this bill. I shall examine some arguments and compare it to the bill.

Looking online, I have found many arguments against this bill and very few in favour. Therefore, I am going to play devil’s advocate and look at these arguments/ask questions. Most groups who are against this are disability rights groups and religious organizations.

Some of the arguments being made against Bill C-384:

Argument one:

“This bill includes depressed 18-year-olds who refuse ‘appropriate treatments’ like say, refusing to take their Prozac. So killing off depressed teens who refuse their meds is now ‘ultimate compassion.’” According to Licia Corbella, an opinion columnist seen in a few newspapers (1) - First off, the bill states that only medical professionals can conduct this action after certain steps are taken, including: having “provided a medical practitioner, while appearing to be lucid, with two written requests more than 10 days apart expressly stating the person’s free and informed consent to opt to die.” Medical practitioner by definition in the bill is a person who is licensed to practice medicine (not just someone who works in the medical field - they have to be certified by the Canadian College of Physicians and Surgeons). If a person is suicidal, they are considered mentally ill, which is generally not considered lucid. The person might also be considered as being “under duress” which again voids their eligibility.

Therefore, if said 18 year old refuses his meds and wants to commit suicide per this bill, he would have prove lucidity and not be “under duress”, write two notes to his doctor within 10 days apart. Also, the doctor will have to receive written confirmation of the diagnosis of depression (easy enough), then has to determine said 18 year old is lucid (mentally capable of making such a decision – highly unlikely in the case of a mental illness like severe depression with suicidal feelings/behaviour), not under duress, etc. The doctor also has the right to refuse such a request. I don’t see many doctors being too keen on allowing this to happen.

This bill only prevents criminal charges of murder against those doctors who choose to carry this out.

The chances are more likely that said suicidal 18 year old is just going to go and commit suicide on his own rather than go through this process, only to most likely be turned down by his doctor anyway.

Will this bill change that likelihood of this person committing suicide? Likely not since a suicidal person with strong intent to end his/her life will do so anyway without seeking the help of doctors. To use an emotional argument for a moment: I know of enough suicides to know those folks tend to do it alone. They don’t get a whole lot of support for their actions from medical professionals!

Argument two:

“Bill C-384 directly threatens the lives of people with disabilities and/or people with chronic conditions. People with disabilities and chronic conditions are often perceived as being without any prospect of relief.” (Council of Canadians with Disabilities, 2009)

“Living without dignity and suffering are common misperceptions that able-bodied Canadians have about the lives of their fellow citizens with disabilities. Bill C-384 does nothing to protect those who find themselves socially devalued in these ways,” states Dean Richert, Co-Chair of CCD’s Ending of Life Ethics Committee. (Council of Canadians with Disabilities, 2009)

First off, one of the conditions states that the individual must have “provided a medical practitioner, while appearing to be lucid, with two written requests more than 10 days apart expressly stating the person’s free and informed consent to opt to die” or “has designated in writing, with free and informed consent, before two witnesses with no personal interest in the death of the person, another person to act on his or her behalf with any medical practitioner when the person does not appear to be lucid”.

Unless the person with said disability/chronic condition makes the request for him/her self of his/her own free will or has already legally prearranged an advocate to make this request on his/her behalf, this is a moot point. The desire has to come from the individual… not the person’s family, doctor, neighbour, friend or anyone else (unless previously and legally arranged beforehand) with an interest in their death. In fact, the advocacy statement has to be witnessed by at least two people who have no interest in that person’s death!

How does this threaten a person’s life at any level of ability or health? I beg the people at CCD and other disability rights groups to read the bill again and tell me how this threatens the lives of Canadians with disabilities or chronic conditions because I’m just not seeing anywhere in the bill that says that anyone else can make this decision for a person with a disability or chronic condition and thus threaten their existence!

To take it one step further, most people see people with disabilities and those with chronic conditions as not being lucid (if we want to use the argument that society devalues people with disabilities and doesn’t see them as being lucid) or being in a state of duress, which again voids eligibility under this new bill. The danger to those with disabilities or chronic conditions is actually quite low in this regard because of the inability to meet all of the requirements! (and yes… all of these requirements must be met… there is no “or” in the bill except in the case of appointing an advocate)

In fact, those people with disabilities or chronic conditions may find themselves having a hard time getting this even if they do want it and they go through the proper channels!

Is this assumption not the kind of assumption people with disabilities are trying to fight against? Can we assume that a person with a disability is not “lucid” or competent enough to make the choice to continue living or die on their own?

What do people with disabilities or the chronically ill need protection from here? A bill that allows them to make an informed decision about their own life or death and be able to access the right to die with dignity if he or she so chooses without fear of legal repercussion upon the doctor who agrees to help with that decision? A bill that simply prevents a doctor from getting nailed if all of the requirements laid out in the bill are met?

As a person with a perceived disability, I would take huge offence to the ideas that I am vulnerable, unable to make my own decisions or need to be subjected to a painful, low quality of life (should my circumstances ever warrant that type of life – touch wood) because some do-gooders think they know what’s best for me!

People with non-progressive disabilities may not want to end their lives prematurely and there is absolutely no threat to that here. This bill has absolutely nothing to do with them or anyone else not wishing to end his or her life!

People with progressive disabilities or conditions that could end up being quite painful and unbearable currently do not have the choice to end their lives and their pain because of Section 14 of the Criminal Code. That is a violation of a person’s right to make a choice about his/her own life, in my opinion. This amendment to Section 14 of the Criminal Code simply keeps that option open for them.

Argument 3:

This might justify what Robert Latimer did and encourage other parents to do the same thing with their disabled children! (This was mentioned to me by a few people in conversation and not an article or website, so there is no proper source to cite)

For those not in the know, Robert Latimer was the father of 13 year old Tracy Latimer. Tracy was born with deprivation of oxygen due to birthing complications which resulted in cerebral palsy and severe mental and physical challenges. He killed her via carbon monoxide poisoning in 1993 because he felt that her quality of life was low.

There are several things that don’t work in this argument:

1. Tracy was 13 years old – underage in the eyes of the law and therefore ineligible.
2. Tracy did not make the request herself and she likely would not have been considered lucid enough to make such a request and therefore ineligible
3. Robert Latimer was not a doctor or any other professional licensed to practice medicine in Canada. He was a farmer and therefore ineligible to perform the act of euthanasia.

Even if Bill C-384 had been passed into law when this unfortunate incident happened, Mr. Latimer still would have committed a criminal offence in the eyes of Canadian law and would still have to suffer the penal consequences of his actions.

I have seen many, many stories of the atrocities committed against people with disabilities, particularly children, such as mercy killings, killings due to caregiver/parent frustration or even medical mutilation (see the story of the “Ashley Treatment” AKA: Pillow Angel for an example of this: http://ashleytreatment.spaces.live.com/blog/).

I do not agree with these acts at all. For starters, these acts were decided upon and committed by third parties, with no choice given to the person at the business end of their actions. The disabled person did not request these actions, nor were medical professionals involved in the killings. There were medical professionals involved in the "Ashley Treatment", unfortunately, and they are being investigated by the appropriate parties.

These folks also would not be permitted to end the lives of their children, clients or loved ones under Bill C-384 because of the requirements of eligibility. They would be committing a criminal offence: that of murder, the unlawful taking of another human being’s life, no matter what their excuse was.

They have no excuse now and they would still have no excuse if Bill C-384 was passed.

Argument 4:

“The language of the bill is not clear whether medical practitioners are the only individuals who can intend the death of an incompetent individual.” (Euthanasia Prevention Coalition, 2009)

Actually, the language is quite clear. Legal documents are not the easiest to read at the best of times, but it quite clear that this process has to involve the person and the medical practitioner (and all of those criteria need to be met unless there is the word “or” in between the criteria)!

See the first Exception where it says that “a medical practitioner does not commit homicide within the meaning of this Act by reason only that he or she aids a person to die with dignity, if (a) the Person [followed by criteria] AND (emphasis my own) (b) The Medical Practitioner [followed by Criteria]”

The summary at the beginning also states quite clearly: “a medical practitioner does not commit homicide within the meaning of this Act by reason only that he or she aids a person to die with dignity…”

Argument 5:

“Lalonde’s (the MP who has proposed this bill) husband Guy Lemarche is the communications director of the euthanasia lobby group - l’Association québécoise pour le droit de mourir dans la dignité (AQDMD)." (Euthanasia Prevention Coalition[2], 2009)”

This is just an ad hominem fallacy in my opinion and I do not see how this is a compelling argument for or against Bill C-384.

Argument 6:

Appropriate palliative care and support should be provided, not a bill that allows euthanasia! (A few sources have said this, so I cannot point to one source in particular)

I used to work in palliative care and I can tell you that the system for the most part is wonderful. There are some great people and facilities out there doing what they can to help people at the end of their lives. There is lots of support and lots of options available to keep people “comfortable”.

However, those options don’t always last for long. Some people develop a tolerance to painkillers so none of them will work. Some folks might have nasty allergies or reactions to the drugs that are needed to keep them “comfortable”. Sometimes family members will request that the person be taken off painkillers because the person is not "lucid" enough to talk to their families. (Yes, I have heard of actual cases where this has happened)

I’ve seen my fair share of terminally ill people who live many weeks or months in pain because they are unable to get the benefit from such drugs anymore or they have worse reactions to such drugs and the pain is the lesser of the two evils.

“Providing palliative care” is just not that simple a solution, in my opinion.

Further comments I have about the opposition of the bill:

1. This does not give people carte blanche to run off and commit suicide just because they are depressed. I am hard pressed to find a doctor who would allow for this.

2. This is simply an amendment to the Criminal Code to prevent charges of homicide against medical practitioners (people licensed to practice medicine in Canada by the guidelines of the law and the4 Royal College of Physicians and Surgeons) who assist with suicide which adhere to the guidelines set forth in the bill. A non-medical practitioner or any other person trying to get off a charge of murder is not going to get off of the charge by invoking this bill.

3. This is not going to set off a task force to kill all of the people deemed to be in pain, incompetent, etc. I've seen some folks mention what the Nazis did and how this might escalate. The invoking of Godwin's Law notwithstanding, this is an example of a Slippery Slope Fallacy. How does this logically translate to genocide?

All that said, I do believe Bill C-384 has its limitations, which need to be addressed before this is brought up in the House of Commons again. Those who are attempting to put this through should really listen to the arguments against and seek to address those within the bill because it is just too vague in certain areas.

Criticisms I have with the wording of Bill C-384:

1. Terminal illness is not adequately defined – I agree that there should be details about what constitutes a “terminal illness” in this act. This is a rather vague term and could be easily misinterpreted.

2. “Mental pain” needs to also be more succinctly defined since it is very easy for people to assume that depressed people should be able to seek out assisted suicide.

3. “Appearing to be lucid” really needs to be defined since this leaves the term open to a lot of misinterpretation, which is what opposition groups are focusing on. What and who determines “lucidity”?

4. Does this also apply to non-Canadian citizens or people who have permanent residence outside of Canada? Nothing is mentioned in the bill whether the person has to be either a permanent resident of Canada (after a certain length of time) or a Canadian Citizen. This could lead to people coming to Canada just to take advantage of this bill. This should be clarified.

I hope this essay has provided some insight into the arguments for and against Bill C-384. As I mentioned earlier, I believe factual information is a great guide in the face of such hot topics and I hope that this might help people make compelling arguments for or against this bill.


References:

1. Under authority of the Speaker of the House of Commons. Bill C-384. Retrieved on
August 5, 2009 from: http://www2.parl.gc.ca/HousePublications/Publication.aspx?Docid=3895681&file=4

2. Council of Canadians with Disabilities. Fast Facts About Bill C-384. Retrieved on
August 5, 2009 from:
http://www.ccdonline.ca/http:/%252Fwww.ccdonline.ca/en/humanrights/deathma king/euthanasia/fastfactsbillc384

3. Council of Canadians with Disabilities. Council of Canadians with Disabilities (CCD) Opposes Bill C-384. Retrieved on August 5, 2009 from:
http://www.ccdonline.ca/http:/%252Fwww.ccdonline.ca/en/humamrights/deathmaking/euthanasia/pressreleasebillc384

4. Euthanasia Prevention Coalition. An Analysis of Bill C-384. Retrieved on August 5, 2009 from: http://www.euthanasiaprevention.on.ca/Analysis-BillC384.htm

5. Euthanasia Prevention Coalition. Complete Analysis of Bill C-384. Retrieved on
August 5, 2009 from: http://www.euthanasiaprevention.on.ca/Analysis-BillC384.htm#Complete%20Analysis%20of%20Bill%20C-384

Thursday, June 25, 2009

Finally! Somebody gets it!

I'm so happy today!! I've got a new job that allows me to work the way I want to and I saw this wonderful blog post!

From Psychology Today's blog: http://www.psychologytoday.com/blog/reclaiming-childhood/200906/how-the-quack-industry-harms-autistic-children

A quote from the beginning of the blog: Dr Michael Fitzpatrick, author of Defeating Autism, recently talked to me about how raising a child with autism can be made infinitely harder - emotionally, financially and practically - by the charlatanic ‘war on autism'.

Dr Michael Fitzpatrick's Defeating Autism: A Damaging Delusion is not only a moving personal account of the challenges faced by parents of a child with autism. It is also a powerful exposé of the damaging effects of the numerous campaigns that promise to ‘defeat autism now' through various ‘biomedical' treatments, such as special diets and supplements, detoxification and medication.

Please pardon my virtual yell but... FINALLY!

It is about time that someone figured out that the negative language and tactics used by societies and professionals is damaging! Negativity in any context for anything is damaging to any cause! Why did it take so long for someone to finally see it??

If a parent sees nothing but doom and gloom and "combative" and "defeatist" language about autism, how will they react when their child gets a diagnosis of it? Negatively, of course. And what happens from there? That negativity pervades everything within the family's dynamic. And then what? Well... this site has examples of the most extreme cases: http://thiswayoflife.org/murder.html

Three examples of the negative attitudes spewed by societies and well known professionals or "advocates" in the past 2 years:

1. Dr. Jerry Kartzinel from Jenny McCarthy's book "Louder than Words: A Mother's Journey to Healing Autism": “Autism, as I see it, steals the soul from a child; then, if allowed, relentlessly sucks life’s marrow out of the family members, one by one..”

It's not autism that steals souls or sucks the life out of families, it's the negativity.

What blew me away was this other comment of his from the same introduction: "Autism is not a dead end diagnosis. It is the beginning of a journey into faith, hope, love, and recovery.”

So what is autism, Dr. Kartzinel? "The beginning of a journey into faith, hope, love, and recovery" or some soul sucking vampire? Make up your mind already.

2. Even PETA got involved last fall with their "Got Autism?" campaign against dairy products. A phrase from their blog: "Thankfully, there is hope. Testimonials suggest that some people with this devastating disease may be able to find relief by simply removing milk from their diet."
(See it here: http://blog.peta.org/archives/2008/09/got_autism.php)

"Devastating disease." is the phrase of the day there.

3. The Ransom Notes from the NYU Child Study Center back in December of 2007.

The one for autism said: "We have your son. We will make sure he will not be able to care for himself or interact socially for as long as he lives. This is only the beginning. Autism"

The one for Asperger Syndrome was not much better: ""We have your son. We are destroying his ability for social interaction and driving him into a life of complete isolation. It's up to you now.Asperger Syndrome"

Those speak for themselves. Luckily, there was enough of an uproar that those got scrapped!

(You've seen these here before)

We're often told that "attitude is everything in life". It's no different in this context, in my opinion. If one is going to look at something negatively, and has only the support of other negative attitudes (particularly by large societies and such... honestly!), it's not going to be a positive thing until that person changes his or her attitude and the others around him or her do too.

People whose children are diagnosed with diabetes or anything else are often told that yes, there will be challenges but that shouldn't prevent said child from living as enjoyable a life as possible. That should not prevent said child from doing the best he or she can to strive for goals and dreams.

The Down Syndrome Research Foundation has this in their vision: "We firmly believe that if people with intellectual disabilities are provided with specific and relevant educational instruction they can reach their potential. This will allow them to contribute to their community thus requiring less dependence on government resources. Without meaningful instruction and interventions, their potential is untapped and they are destined to engage in empty activities."

Notice words like "Potential"?

From the Autism Speaks page: "Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle."

What do we have here? A "Crisis"

From the Autism Foundation Canada website: "Engage, Educate, Empower and Unite people to find a cure for Autism"

"Empower", yes, but not autistic people.

When autism is the diagnosis, it's not met with the same optimism as other conditions. Sure there are challenges... and the challenges are different for each person, but does it merit the kind of "war campaign" that we often see being waged? How is that helping anyone?

No wonder parents feel so devastated. I can't blame them if that is all they see!

What if parents were told: "Your child has autism, but that doesn't mean he/she cannot be happy or live a good life. With the right attitude and support by you and the people in his/her life, your child might just amaze you. With his/her high intelligence and ability to focus, he/sheis capable of going on to do some great things in the world. All he/she needs is some positive support and ways to work with the sensory or other issues he/she might face in life so that he/she can live his/her dreams in life. There will be challenges, but together, I think we can help your child work with them."

How would a parent handle autism then? They might just be able to handle those challenges a bit better if they knew they were getting positive support and the right kids of support!

Any first year psych student can tell you how attitude affects the things we do, be it positive or negative. It has amazed me that professionals who are university educated are ignoring this very simple fact and putting such a negative spin on things related to autism.

If autism is the worst thing I'll ever have to deal with, I am thankful. There are many people in this world going through terrible and painful things like wars, poverty, terrorism, oppression, torture, nasty diseases, etc.

All I have is autism and I can deal with that.