Saturday, May 10, 2008

Laughter & Profanity - Run The Dream's Response to Our Concerns

On March 28th, 2008, I sent the following email:

To: jonathan.howard@runthedream.ca,
Subject: You run & reasons
Cc:bill.robertson@runthedream.ca,alex.bittner@runthedream.ca,alison.pickard@runthedream.ca,
becky.doyle@runthedream.ca,bryan.howard@runthedream.ca,carly.murdock@runthedream.ca,
kevin.cassan@runthedream.ca,kevin.fraser@runthedream.ca,lauren.canzius@runthedream.ca,
mike.mccarther@runthedream.ca,scott.rogers@runthedream.ca,warren.howard@runthedream.ca

Sir,

Words like these - "spared the burden of dealing with Autism", "ultimately preventing it or finding a cure." are incredibly offensive to autistics and parents such as myself.

My (autistic) son ran across Prince Edward Island in 2006 and runs almost every weekend in a roadrace FOR autism, not *against* it as you are doing. For all of our involvement in running and autism advocacy we will not be supporting you run and will be educating PE Islanders about why we find your attitude so offensive.

What, exactly, do you have against people like myself and my 2 sons that you want to prevent people like us from existing?

What, exactly, do you plan to do with any money you raise?

-jypsy (janet norman-bain)
The Autistic Celebration Run - http://irunman.blogspot.com
Runman's blog - http://therunman.blogspot.com


My email was met with silence. Except for the email from one service provider, bouncing back one of the addresses, I got no reply whatsoever. I noted this in the post I wrote on the World Autism Day, April 2nd.

On May 9th, I received an invitation, via the PEI Autism Society, from Mr. Mike McCarther, Production Manager - Run the Dream Atlantic, stating he'd be "ecstatic" if we'd join them Wednesday, May 14th in Charlottetown. Mr. McCarther also invited me to "feel free to contact me to RSVP, or with any questions or concerns that you may have."

We sent him the following email:

Mr. McCarther,

Please consider our concerns as expressed below and at http://therunman.blogspot.com/2008/04/running-for-autism-not-against-it-why.html

Thank You

-janet norman-bain & Alex Bain

("Below" was a plain text copy, minus the links, of what is at the link provided)


I got the following reply (slightly edited to preserve the integrity of this blog) from Mr. McCarther:

From: "Mike McCarther"

Haha oh sh*t...


That is the long awaited reply from Run The Dream to autistics expressing concern over Mr. Howard's message. Laughter and profanity.

We are not laughing.

In fact I'm quite offended and shocked speechless.

16 comments:

Alyric said...

Incredible.

I think I shall write them a very short but polite note.

Alyric said...

Here's the response I got:

Thank you for your e-mail to Jonathan Howard regarding the unfortunate communication that was received by Ms. Bain from Mr. McCarther.



As you can appreciate, Jonathan is quite busy with the run and after consulting with him regarding your e-mail I am answering on his behalf.

I would trust that Mr. McCarther’s explanation to Ms. Bain on Sunday May 11 of the circumstances of his unfortunate e-mail has already clarified this matter. We have spoken with Mr. McCarther, who assures us that his message, while inappropriate under any circumstances, was intended for someone on his team in relation to a completely different matter and never was intended to be about, nor never should have been sent, to Ms. Bain. It is regrettable that while technology can enable great communication accomplishments, it can also, in the wrong circumstances, lead to terrible misunderstandings. Without hesitation or reservation we apologize for any discomfort on Ms. Bain’s part caused by this most unfortunate set of circumstances where there was nothing other than good intentions.


In respect of your comment of concern about “the language used in the Run the Dream campaign to raise both funds and awareness of autism” I would like to assure you that we have been most diligent in working with Autism Society Canada, parents, and other organizations in ensuring that our communications use the language of the community. In fact, I would say, without hesitation, that we have chosen our words very carefully based on the advice of experts. One of the points of which we’re intensely aware is that there is a great diversity of opinion within the autism community both towards the cause(s) of autism and the approaches that should be taken in addressing it. The fact of the matter is, notwithstanding Ms. Bain’s experience – which we understand is right for her, and for which we salute her – is that having to care for one or more people with autism can be a huge burden, especially for single parents or families with limited resources (that's why one father is currently on a hunger strike at Queen's Park in Toronto). Ms. Bain is certainly free to have her point of view, but in our experience it is not exclusive, and it's equally valid with the views of others who believe that the path that should be pursued is a cure (Autism Speaks – Cure Autism Now initiative); that vaccinations are the cause of autism (many people and organizations); or that they've cured their child of autism through diet (Jenny McCarthy, et al). We are not taking any positions on any of these approaches, that's for people far-more learned and with a far greater interest than ours. Our sole objective is to assist those people and organizations who are today involved in the pursuit of answers to, and support for, people with an ASD and their families by raising awareness of the condition, its pervasiveness, and the need for our Governments to do more (research, support, etc) for those people who live with autism.



Notwithstanding these considerations, we reviewed the sentence on our web site to which Ms. Bain took exception, and have revised it in the following way. “Jonathan wants to encourage his fellow Canadians who are not directly affected by autism, to take time to educate themselves about the challenges and barriers faced by individuals and families dealing with an autism spectrum disorder, and to promote a unified and effective approach in Canada to understanding and supporting those who are affected by autism.”



Thank you for getting in touch with us. I trust that this response helps answer your questions and that the rest of your stay in Canada is as delightful as the first part sounds. I have been to Australia on six different occasions and enjoyed it immensely every time. I look forward to a seventh visit some day.

All just a mistake apparently. Pity that I'm getting so cynical these days having seen what comes out of Autism Ontario and it's such a delightful province to live in too:)

I also got a chance to see PEI for all of one day and in the pouring rain. Fortunately it's damn near impossible for PEI to be anything but serene and beautiful.

jypsy said...

You got *ALL* that and I got:

"Haha oh sh*t..."
and
"Wrong email...please disregard the previous statement"

And to be clear - he was replying to my email -

To: "jypsy [ janet norman-bain ]" jypsy@isn.net,
"Sarah Hill" hill.sarah@gmail.com,
"Carly Murdock" car_murd@hotmail.com,
"Alex Tessier" alex.tessier.uep@gmail.com
Subject: Re: Running FOR Autism, not AGAINST it. Why we don't support "Run The Dream"
From: "Mike McCarther" mike.mccarther@runthedream.ca
Date: Fri, 9 May 2008 20:50:27 +0000
Sender: Mike McCarther mmccarther@gmail.com

Haha oh shit...
Sent on the TELUS Mobility network with BlackBerry

-----Original Message-----
From: "jypsy [ janet norman-bain ]" jypsy@isn.net

Date: Fri, 09 May 2008 17:43:45
To:mike.mccarther@runthedream.ca
Subject: Running FOR Autism, not AGAINST it. Why we don't support "Run
The Dream"


Mr. McCarther,

Please consider our concerns as expressed below and at [snip]


It is certainly clear that he didn't mean to send me his honest reply but it is obviously his honest reply. And, it is the ONLY reply to the 2 emails I sent that I received. I'm not sure why I'm getting a second hand apology. Do I not deserve that first hand?

I am pleased he changed his website (though we are still a "burden" in his blog) but, sadly, he hasn't changed his attitude.

As to the validity of my POV, or at least the comparisons made, I'm not even going to touch that one. How very, very sad.

Alyric said...

Sad is undoubtedly the best descriptor and they're doing their all to wallow in it. I know they've got 'Run for the Dream' as the title but I keep getting this picture of rhinoceroses - wallowing, And rhinoceroses don't run well at all, which seems poetically right.

jypsy said...

Alyric,

Who actually wrote that response for Mr. Howard?

gayle said...

A mistake -blame technology - nice try. That was the best he could come up with?

"most unfortunate set of circumstances where there was nothing but good intentions"

Lawyer-speak. - Gayle

Alyric said...

A bloke by the name of Bill Robertson.

Don't know anything about this initiative but the whole thing reminds me forcibly of the fracas with the Ontario Asperger's mob. It's the same thing all over again. They're running this nice little clique for the parents and genuine autistics need not apply. If they do they will be dealt with in the same fashion as jypsy got handed here, which should be a pretty clear indicator of the level of 'advocacy' for autistics. None at all and no respect either. I got the reply because I mentioned that I'm a visitor and they apparently are aware that this may not be the best publicity initiative in the world. It's disgusting.

Are they government funded because if so, the government does not know what they're supporting here. Maybe they should.

abfh said...

a great diversity of opinion

Yeah, all sorts of opinions except those of autistics.

Anonymous said...

You know, these events can be big money-raisers... I think I instantly got his intent -- he was fearing objections like yours, and rightly so -- it's a lot easier to raise money when people can feel sorry for the "victims" of ASD's.

Just a thought...

K-2 said...

are you serious? you people are so fu**ing wound up you are missing the big picture. A man who has worked with autistic children his whole life, who has sacrificed tremendously for these charity organisations, is being targeted. And for what? "oh sh**...haha" Well in all honesty, the way you are going about this is all wrong, keep it between the sender and the receiver, and make sure you understand the context and the intent first. Just last week I sent a message replying to my boss' email that said "what the fuck is the problem with that?" You want to know who it was "intended" to go to? My friend...context: Me asking my best friend why having a wings night on thursday was better than wednesday... fortunately my boss understands these things happen, and it takes open minded people to understand when a misunderstanding has taken place. Honestly, would he be taking up all of this time to spread awareness, and to "help" (or whatever you want me to say to be politically correct) autistics, make little or no money, and trust me, he is not making much, if anything, he's in debt up to his eyes... Bottom line, good people deserve respect, understanding, and the same compasion you give your family... because one day, you may be in this type of situation, and imagine if noone was there to hear what was really intended... trust me, it will come around some day.

oh and ps: funds from such organisation and charities are used for awareness, treatment, prevention, etc. and Im not talking strictly about autism. If you put down the ppl who are donating their time, they will stop donating their time... cause the bottom line is they are getting "paid" little to none... so think before you tarnish another person's name

jypsy said...

"A man who has worked with autistic children his whole life"

You are mistaken, he has not worked his whole life with autistic children. He worked "as a swimming instructor and day camp counsellor in university" where he worked with autistic kids.

"Bottom line, good people deserve respect, understanding, and the same compasion you give your family"

Exactly - and even more so when you are working/running/speaking in the name of a population you are not a part of. Autistics are "good people" too and deserved everything Mr. Howard deserves. My son and I (both Dxed with an ASD) expressed our concerns, as we were invited to do, in a most respectful way, and what we got in response was not respectful, understanding or compassionate.

Anonymous said...

I just stumbled upon this blog and would like to speak for second on Mr. Michael Mccarther. I cannot speak on the said emailing incident but I would like to say that Mr. Mccarther, at the age of 20, has put forth an incredible amount of time and effort into various organizations that seek to create awarness for and aid persons with special-needs. He may have worked 'as a swimming instructor and day camp counsellor in university' where he worked with austistic kids but this is in no way a representation of his work, volunteer, and educational background. Michael has dedicated countless hours volunteering with his non-profit organisation, halifax special olympics, and many other groups or events that support special-needs children. Michael makes little to no money from such endeavors as 'run the dream' and simply seeks to improve the lives of others. I can't understand why Mr. McCarther would have sent that email... mistake or not I don't condone the unprofessional and unpolite language but I wanted to assure you he is not a man seeking profit or publicity at the expense of those persons with autism or aspergers.

jypsy said...

Perhaps I am mistaken in thinking K-2 was speaking about Mr. Howard when he/she may have been speaking about Mr. McCarther? My reference to work history was Mr. Howard's. You don't condone the unprofessional and unpolite language but do you condone the message that Mr. McCarther is obviously supporting that autistics are a "burden" and should be cured or ultimately prevented from existing in the first place? My 20 year old autistic son (who owns this blog) and I (also on the spectrum) absolutely do not. We are not alone (note the comments here and here and "Some comments from the Autistic/Autism Community" linked to that post). Whether or not he makes money is not the issue - this kind of language (and I don't mean his email) and attitude is harmful to autistics and we will be the ones who pay for this message being spread.

Anonymous said...

You actually think that those people are doing what they are doing with that Campaign because they think that you and your family and others with Autism are a "burden" and should be cured or ultimately prevented from existing in the first place. You actually think that people would be giving up their time and energy to be thinking that? Give me a break. Just ridiculous.

I came across this blog by accident and I am amazed at the negativity from people to others who are trying to make a difference in this world where so many unfair things are happening right now.

I like the comment that someone wrote about if you put people down who are donating their time...they will stop donating their time. Excellent point.

The world is not always fair such as the floods, hurricanes, typhoons, tsunamis, earthquakes and more. Some people are born differently, with different colour hair, skin, 6 fingers, with Autism etc. All of these things are natural and not always easy to live with but most people do the best that they can. Any bit of help from anyone to help with anything where someone could use help with in our world today should be thanked and not put down. As I am very aware of the challenges it is to raising an Autistic child, I think that what this man is doing is not going to harm my child in any way but show the support that others have for each other.

If there is someone who is going to run across Canada to help raise awareness of Autism then what is the problem? It seems to me that any community this man passes will be touched with what he is doing and the community will only know more on ASD. As well the children who are born with Autism or on the spectrum in these communities will have a community where the people understand the disorders and can help to include them better than they could have before having no knowledge of it at all. Not sure why all the drama over an e mail and why all of the negative thoughts.

Anonymous said...

From the last comment on June 16th...very good comments and I am wondering why no one responded??? I guess it got a nice point to others.

jypsy said...

""If there is someone who is going to run across Canada to help raise awareness of Autism then what is the problem? It seems to me that any community this man passes will be touched with what he is doing and the community will only know more on ASD."

The problem is the message. Making people aware that we are a burden and that we should be cured or prevented from being, rather than accepted, accommodated and included is a problem. Maybe not for you but for those of us he is talking about. We don't need that kind of
awareness" and would be far better off without it.

This is from Mr. Howard's website under "How are Donations used?"

"All donations received during the Run The Dream campaign will be held in a dedicated fund by Autism Society Canada until the conclusion of the fundraising campaign early in 2009. Upon the completion of the campaign, Autism Society Canada and Run The Dream representatives, along with community representation, will invite, receive, and review applications from Canadian charitable organizations conducting work (support, respite, research, education, etc) in the field of Autism Spectrum Disorders for grants from the available designated funds; National and Provincial. The committee reviewing the grant applications will decide how the available funds should be disbursed based on the need and priority of the applications received. All available funds from the Run The Dream campaign will be disbursed through this process. The application process will be posted on this web site prior to the completion of the campaign."

It is now a quarter of the way through 2010 and no application process is posted. ASC makes no mention on their website of the Run The Dream Fund.

What exactly happened to all the money raised on behalf of us and in our name? Where is the "total transparency in fundraising and the ethics and guidelines associated therewith"?