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What I Think About the Ice Bucket Challenge

August 23, 2014 By

Since the ALS Ice Bucket Challenge started doing the rounds, my opinion about it has gone back and forth. And back again. There are things I don’t like about the challenge, one of them being the choice between dumping ice water on your head and donating $100. The message that being cold, wet and uncomfortable is preferable to donating $100 to charity doesn’t sit well with me.

I do know, however, that many people do both: they douse themselves with ice water and they donate the $100. No-one can deny that this campaign has been extremely successful in terms of raising money and awareness. Fundraising in today’s world is such a monumental challenge. Every year I try to raise funds for autism, and while I am always grateful for the funds that I do raise, I cannot escape the fact that it is getting harder and harder every year. Simply asking people for donations is no longer effective. These days, people seem to need gimmicks in order to donate to good causes.

And that’s fine. It has me thinking that maybe I need to come up with a gimmick to help with my own fundraising efforts. However, as much as I support those who have participated in the Ice Bucket Challenge, I have to confess that I still don’t like this particular gimmick. Yes, it has raised money. Yes, it has more people Googling ALS. Both of these are good things.

But what about those of us who choose not to participate? I have watched in dismay as people with limited financial means have been nominated for the challenge, and I have watched in bitter disappointment as those people have been mocked for not taking up the challenge. I have seen people being called things like party-pooper and apathetic. People are being advised to “give up one cup of coffee a day for a couple of weeks” in order to have funds to donate. I saw a priceless Facebook post in which someone arrogantly stated, “Everyone can afford to donate something.”

You know what, though? Not everyone can afford to donate something. There are people who have to dig around in couch cushions in order to buy diapers for their children, people who are choosing to let their Internet and phone services be cut off because they can’t make the bill payments, people who stand in the grocery store counting their coins and wrestling with the choice between buying milk or bread.

Those people should not be guilted into taking part in a trend that they cannot afford, simply because everyone else is doing it. People who do have money shouldn’t feel compelled to take part. This should be a matter of choice, not of coercion or emotional blackmail. And before people start jumping on me, I do realize that those who engage in these tactics could well be in the minority. But they do exist, and the fact is that many, many people who are short on cash – and some who aren’t – are feeling guilt that they should not be feeling. I’m sure it’s not the intent of those who started this challenge, and it’s not the intent of a lot of people who pass it on, but it has been an unfortunate effect.

The Ice Bucket Challenge is problematic for another reason, which is best described in the following picture that I saw on Facebook this morning.

icebucketWhile people all over the world are dumping water on themselves – water that is essentially being wasted – children are dying of thirst. If we need a gimmick in order to donate, shouldn’t we come up with a gimmick that does not involve so much waste? Could this gimmick be tweaked in a way that raises funds for ALS and also draws attention to the plight of people who do not have access to clean water?

I am glad this campaign has been successful, and I truly applaud those who have participated and contributed to its success. All I ask is two things. First, be respectful toward those who do not take part, either because of financial hardship or simply because they choose not to. Second, if you dump water on your head, try to do it in a way that the water can be reused. Catch the water in something and use it to water your plants, or wash your car, or fill the dog’s water dish – anything that does not result in the water simply wasting away.

And whether you choose to take part in the challenge or not, take a moment to Google ALS.

This is an original post by Kirsten Doyle.

Filed Under: ALS Ice Bucket Challenge, Charity, fundraising, Guilt, money, Waste, Water Tagged With: , , , , , , ,
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What Autism Parents Have Patched Together, Let No Media Man Put Asunder

July 23, 2012 By

I am angry.

I’m not talking about mild aggravation here. I am scream-in-frustration spit-in-someone’s-eye angry. I would like to take the object of my anger, lock him into a room with me, and give him a stern what-the-bleep-are-you-thinking talking to.

Deep breath… soothing thoughts…

Allow me to explain.

As an autism parent, I spend the better part of my life fighting for stuff. Six years ago, I fought for the assessment that led to George’s diagnosis. Then I fought for services. Every year I fight for funding to pay for respite workers. I fight for educational accommodations and opportunities for my son.

I fight for awareness.

Most of all, because I want my son to have the opportunity to live a happy, healthy, productive life, I fight for acceptance. I try to encourage people to look past the more challenging aspects of autism to see my child for who he is: a beautiful human being, full of love and bursting with potential.

From time to time I see baby steps of progress. Someone might leave a comment on my blog saying that they have a greater understanding because of my writing. Or I might see comprehension dawn in someone’s eyes when I offer an explanation for a grocery store meltdown. Those moments of progress are so gratifying, because they give me hope for my son’s future.

And then, along comes MSNBC host Joe Scarborough, stating that the man responsible for the Colorado movie theatre shooting was “probably on the autism scale.”

Thanks, Joe. Way to promote acceptance for people with autism. Telling the world that a kid with autism could potentially grow up to be a mass murderer really helps our cause.

What astounds me is that Joe Scarborough is the father of a child with Aspergers. Having parented a child on the spectrum, hasn’t he had to have the same fights as other autism parents? Has he not had to beg for funding, or services, or the rewording of a point in an IEP? Has he not dealt with the stares of unsympathetic strangers or the ostracism of his child?

Has he not worried about whether his son will be accepted by the society in which he has to live?

Joe Scarborough’s statement about the Aurora shooter is not based on anything but dangerous speculation. It is my hope that most people will have the sense to dismiss what he said as groundless nonsense. It is my fear that he has planted new seeds of baseless stereotyping that will serve to further isolate the kids we are trying so hard to integrate.

People really need to think before they speak. Especially people with any kind of public voice.

(Photo credit: Fifth World Art. This picture has a creative commons attribution license.)

Filed Under: Acceptance, autism, Colorado shooter, stereotyping Tagged With: , , , , , ,
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Leading The Food Revolution

May 9, 2012 By

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Today’s story starts with Megan, the 15-year-old daughter of my friend Michelle.

In many respects, Megan is a typical teenage girl. There are celebrities she loves and those she cannot bear the thought of. She enjoys going to the movies, has dreams about the future, and when the time comes, she would like to wear a pretty dress to her senior prom.

Except that if things don’t change for Megan soon, there may not be a senior prom. Because in order to go to senior prom, you have to go to high school. And Megan is too sick to go to school.

When Megan started experiencing severe dizziness a couple of years ago, her mom took her to a string of doctors who were not able to identify the cause. Even a week of tests in hospital did not reveal why this young girl was so off-kilter that she had to rely on a wheelchair.

The dizziness was not Megan’s only problem. She had a prolonged bout of respiratory illness, her periods were problematic from the very first day, and she became unable to sleep for more than two or three hours a night, in spite of being constantly exhausted.

Eventually, doctors were able to determine that Megan had Fatty Liver Disease. It became clear to her mom, Michelle, that poor nutritional choices had led to this outcome.

But Michelle, who has endured a lot of hardship in her life, is not one to be beaten down. Instead of simply accepting Megan’s condition, she decided to do something about it, not only for her own family, but for her entire community. She started by setting up a Facebook group for people suffering from Fatty Liver Disease.

Then she started making radical changes to her own and her daughter’s lifestyles.

While Michelle acknowledges her role in making less-than-ideal food choices for Megan, she points out that many parents simply do not understand the implications of the foods that they and their families consume. As a society, we are so caught-up in healthy-sounding labels like sugar-free this-thing or low-fat that-thing.

There is no denying the fact that food manufacturers hire very smart marketing companies who can successfully deceive entire segments of the population into believing that something is good for you when it’s actually leading you to an earlier grave.

Michelle decided that it was time for this to change, and so she has spearheaded the organization of an event in her community that will teach children and adults about healthy eating habits in a fun and engaging way. The Jamie Oliver Food Revolution Day is a global event being held in communities everywhere on Saturday, May 19th.

Michelle is organizing the event in London, Ontario. This day promises to provide entertainment and enlightenment for the whole family. Kids will enjoy such activities as making fruit or vegetable characters , while adults will learn how to make sense of those confusing nutrition labels and how to easily incorporate healthy eating into our busy lifestyles.

If you live anywhere near London, Ontario,  it is well worth attending this event. For details give Michelle a call at +1 226 234 4006.

And if you don’t live in London? Check out the Food Revolution website to see if there’s an event near you. It is going to be a global phenomenon on May 19th, with hundreds of public events and dinner parties in more than 300 cities worldwide.

Today’s children are the first generation who, on average, will have a shorter life expectancy than their parents. Michelle is determined to do what she can to turn the tide not only for Megan, but for other kids in the community.

Let’s all support the Food Revolution on May 19th. Together, we can truly change the world for our children.

(Photo credit: Denise Testa, JD Communication and Design)

Filed Under: 2012 Wordcount Blogathon, Chronic Illness, Fatty Liver Disease, Food, Food Revolution Day, health, Lifestyle, Nutrition Tagged With: , , , , , , , , ,
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Social uncommunication

November 1, 2010 By

Today is a big day for the autism community.  It is the day of the global communication shutdown, in support of individuals who spend their lives on the autism spectrum.  Those participating in the shutdown are voluntarily doing without Facebook and Twitter for a day. The idea behind this is for us to experience for one day what our loved ones with autism go through as part of their daily lives – the frustration and feeling of lostness that comes with not being able to communicate.

For all intents and purposes, Facebook and Twitter do not exist for me today.  The only thing that will be posted under my name to my Facebook wall will be the auto-publish of this post.  If anyone tags me in comments or pictures today, I will not know it. If anyone messages me – either privately or to my wall – they will have to wait until tomorrow for a response.  I will not find out until tomorrow morning whether anyone helped me win Fast Money in the Facebook Family Feud app.  I have not gotten to see anyone’s Halloween pictures, I don’t know how my Scottish friend’s job interview went, I don’t know what anyone’s up to today. Much of what happens today I will probably never know about, because by the time I get back onto Facebook tomorrow, it will be old news.  Same with Twitter.  If anyone is waiting on the edge of their seats for tweets from me, they’d better settle in for the long haul.

It’s an interesting experience, partly just because of the habit of it. Giving up Facebook for a day is a bit like giving up smoking for a day (actually, there’s an idea: a global non-smoking day in support of those affected by cancer). I remember what it was like when I gave up smoking fourteen years ago. One of the hardest aspects of it was simply breaking the habit of physically picking up and lighting a cigarette after a meal, or as an accompaniment to my morning coffee.  Similarly, it is now my custom in the mornings to pour myself a coffee and drink it while first reading emails, and then seeing what’s going on in Facebook Land. I almost clicked the Facebook icon today just because it’s what I always do.

So what I am I learning from this experience? Do I feel a better sense of understanding for what my son lives with?

To be honest, probably not. Oh, don’t get me wrong. I do feel the frustration of non-communication. I do feel that I am cut off from a part of my life that I have grown to be dependant on, and in a sense, I am feeling a sense of what it is like for George. But I am mindful of the fact that I am doing this by choice.  I know that it is a one-day thing, and that tomorrow I will be able to catch up on much of what I am missing today.

George lives with his social communication difficulties day in and day out. He has not chosen to separate himself from the world. He cannot make the choice to wake up tomorrow and be fully verbal and socially conversant.  Tomorrow, when I return to the world of social media, George will still have autism.

I am still glad that I and thousands of other people have done this. Maybe, in some small way, this global effort will make the world a better place for George and people like him.  Maybe the people who have chosen to be a part of this shutdown will, in the future, be a little more tolerant of children they see having meltdowns in public. Maybe someone will give a job to someone with autism. Maybe a politician, somewhere in the world, will vote in favour of a bill to help special needs individuals.  If a child has trouble getting a point across in a classroom, maybe the teacher will recognize the possibility of autism instead of dismissing the child as “stupid”. Maybe a doctor will finally listen to a mom who has been begging for an evaluation referral for her child. Maybe this shutdown will lead to a lot of little good deeds that will have a ripple effect throughout the world.

Today will not enable me to know what it is like to be autistic. But it does give me hope for a future in which people with autism are recognized as valuable, integral parts of the fabric of human society.

Filed Under: autism, Communication Tagged With: , , , , , ,