Autism Day at the Opera
April is Autism Awareness month. The United Nations General Assembly even designates a World Autism Awareness Day.
World Autism Awareness | Gone Amuck
For the last week, I’ve been following the comment streams on Twitter (#Autism, #ASD, #WAAD…) and other social media outlets like Facebook… and I wonder if the whole world is nuts.
My son is 43, has autism and we are desperate for help. So I appreciate the need for autism awareness and DIRECT ACTION.
For autism awareness day, I’ve learned some people are buying blue mascara and lipstick to spread “awareness about autism.”
Others are using April 2nd as a “retail therapy” day to buy new clothes in blue.
How will Autism Awareness Day impact the lives of people with autism and their families?
For the life of me I can’t imagine why blue lights at the Sydney Opera House, The White House, Empire State Building or the house next door will change a thing–except for the blue light bulb retailer.
Put Time and Money where your Mouth is
It makes more sense to me, that the expense of buying blue lights, hiring a team of workers to install and operate those lights for one day–is just dumb and a waste of opportunity.
Using those same dollars, the Opera House could invite families or parents to an evening of the opera. Sure, the Sydney Opera House might not get the same press, but the impact would be direct and measurable. Real families would have the treasured opportunity for a night of respite.
I understand the White House is meeting with some advocates for autism which is an action step–much more useful in my opinion to a blue illusion.
The Empire State Building–well, there were those romance flicks with the hearts on Valentine’s Day, but really?
Action–not Hype
Now good people and advocates are working hard for all this autism awareness, and I know my skepticism sounds like sour grapes or something mean spirited.
I’m just tired of being used and being the victims of charity.
Past Experiences with the Charity Model and hype
One time our family was on a trip to the Smokey Mountains. My husband Tom, an avid golfer, passed a golf course which had a huge sign over the gate “Welcome Special Olympics.”
Tom went to the front desk and asked if Aaron, our son with the label of autism, could ride in the golf cart as he played golf.
The desk clerk looked confused. Tom said Aaron would be sitting next to him and would not even be on the course. He also told him Aaron has accompanied him on other golf courses and it worked out fine.
As the clerk continued to stammer around–Tom pointed to the “Welcome Special Olympics” sign.
The young man shook his head,
“Tomorrow, our Special Olympic fundraiser is for radio/TV personalities, the Governor and all kinds of influential people coming to play golf. NOT–those kind (pointing at Aaron). This is our public relations and publicity event for the year. It isn’t for them. We don’t allow them on the course.”
Real People–Not Causes
At a time when getting services for children and adults with autism and their families is desperate, my hope for tomorrow is that people will spend a couple minutes with actual people who have the label of autism.
If you want to dress up in blue from head to toe, with blue eye shadow and lips, more power to you. But somewhere in the day, actually touch a real person. Make a difference in an actual life.
Make the Autism Awareness Day, more than a media moment.
Take the opportunity to begin change–one on one.
Keep Climbing: Onward and Upward
All my best,
Mary
What do you think?
Are you wearing Blue? Are you going to spend a couple minutes with an actual person who has the label of autism?
Maybe they want to attract attention of many people with those blue lights. That’s the only effect I can think of. No positive direct effects for autism itself. I would suggest they use the money for taking care of children or people with autism. That would be more useful.
I agree Henri. We have so much to do, spending time on blue lights seems silly. Thanks for your comment.
I totally agree with you. Dressing up in blue or spending a ton of money to put up blue lights isn’t going to raise money or have much of an affect. People need to learn about inclusion because they are just like the rest of us. The man at the golf course didn’t care about Aaron or anyone with special needs, he only cared about how much money and clients this would bring to his company. He is one that needs to know about inclusion and how to accept others. I hope one day inclusion is accepted worldwide.
I hope you’re right Annie. But it’s up to each of us to help make inclusion a reality. Can we “include” just one person in our social life, in our family, in our church, in our community? It’s a one to one change process.
I really think it’s a great idea to promote autism awareness. People need to understand that people who have autism are just like the rest of us. That’s why I believe that inclusion into schools is so important. I Do agree that people take wearing the color way too seriously and don’t understand that it’s not about the color, but more about the actual disorder.
Glad you can help us spread the word–plus actually touch individual lives.
This article is so true, and finally someone has said it! Wearing blue, having blue lights on popular buildings, or posting a hashtag on social media isn’t going to affect those with autism directly. Yes, it’s great that people are showing their support for those with autism, but it would mean so much more if you went out to meet some of the people who have dealt with autism and learn from them and hang out with them. It would make their day. This article makes very good points. I love it.
Thanks Kendall. Now, at least there are two of us 🙂
I simply can’t believe how far we’ve not come. I’m astounded, absolutely astounded, at the response of the golf course staffer. All we can do in the face of such absurdity is pledge to be all the more inclusive ourselves.
You are right. All that man would have needed was one positive experience and perhaps he would have seen the light. We can only hope the future is better because of experiences like you described where your husband and his coworkers developed one on one relationships with people with disabilities.
I continue to be slack-mouthed at the responses of some people like that man at the golf course. It has nothing to do with autism awareness but everything to do with basic manners. Jeez!
I agree with you, Mary, up to a point. I think the blue lips and lights do help at a very basic level to get jerks like the above guy moving in the right direction. They can only move v-e-r-y s-l-o-w-l-y and need to be educated in very basic ways.
These awareness days act as a focal point to get many, many people involved to whatever level they feel comfortable even if that appears daft to someone whose been enmeshed in this world for years as you have. And a critical mass of awareness and understanding is crucial IMO otherwise you are trying to fight a tsunami of ignorance which is a waste of energy and opportunity.
I think I thought the same as you about pink ribbons years ago but now even though there isn’t yet a cure for breast cancer there is a lot more compassion in society for sufferers. And I hope the same can be true for those with the label of autism although it is different type and more difficult challenge.
The key of course is that all this promotion has to be balanced with real, pragmatic help for families like yours and this is what you need, right here, right now. So I totally understand your frustration at what must seem trivial pointless fripperies.
I don’t know anyone with autism but I can retweet, share and comment. And I will.
Loved your comment Alison, but particularly the last paragraph. They do seem like, “trivial pointless fripperies.”
You’re right, the pink ribbons and the “run for breast cancers” has touched many lives. It’s time to be positive.
Thanks again for your comments my friend.
After reading this in many ways I never put it into perspective the way you have in your blog about Autism Awareness Day. Yes, wearing blue is catchy and people will be asking you what you are supporting by doing so. However most people will just walk away simply “knowing” that’s what they’re supporting and not actually stopping and taking time to think about it. I agree completely that Direct Action is the only thing that will make Autism Awareness Day more effective and special to many. Reaching out and identifying a person who is autistic will be more meaningful and fulfill the experience much more than just talking about the idea of it. Mary’s right! Get to know someone for who they are, don’t just talk about the idea and move on.
Thanks Rachel. I keep waiting for someone to throw the rotten eggs.
Our children and families need help today. If each of us reaches out to one person that would make a difference.
Mary,
You have put my totally disorganized thoughts into words that make so much sense. I may still wear blue, and will always continue to work for better awareness and understanding, but the blue lights and media hype is just a little too much!
Thanks Char. I wasn’t sure if I would be burned at the stake:)