The Power of Advocacy

At this time of year with election day approaching it seems that everyone is advocating for something. Politicians are advocating their positions on key issues that affect their constituents.  Special interest groups are advocating for the politicians that represent their viewpoints. Business leaders are advocating for candidates that will enhance their prosperity while the underserved are advocating for more attention to their needs.  Opinions run rampant on social media like FACEBOOK and sometimes these opinions run those with opposing viewpoints out of town.

Everywhere one turns, whether tuning into television ( and not only the news show but entertainment shows too espouse political viewpoints) or getting one’s manicure or barbershop crew-cut, people everywhere are advocating their perspectives.  Yes, this is the American way, our first amendment right to free speech, and yes, we Americans hold this near and dear to our hearts and rightfully so!  It is powerful to advocate.

Why is advocacy so powerful?  First, on a primal level, advocacy allows us a vehicle by which to use our brains, formulate an opinion and then passionately share it.  I am not sure the amount of calories burned but perhaps someone has or will do a study as to whether constant advocacy leads to weight loss!  Anyhow, back on topic, it would seem that advocacy is a healthy form of discourse.  However, not always.

A childhood friend of mine was actually threatened and bullied by some other people from our childhood because of his political views that he shared on FACEBOOK.  They even threatened his mother!  This is a sad example of how advocacy can turn ugly and cruel.  There have also been recent instances that I have noticed advocacy envy where advocates who supposedly are working together for a cause, diminish and knit-pick the work that others are doing rather than celebrating the good intentions that create awareness.

In the world of Autism advocacy, many people living with Autism have difficulty with verbal communication (although they find other ways to get their point across for their needs and wants) so they are dependent on their peers who are more verbal, their parents and caregivers and professionals working in the field to express viewpoints.  The Daniel Jordan Fiddle Foundation is extremely proud to have been among the first national Autism organizations and to be the first one focused on adults, to have an Advocates Advisory Board. We have always relied on our Advocates to guide us in our program development and in all else that we do. The Advocates on our Advisory Board all live with the challenges of Autism and some have posted on this blog and others will in the future.  These advocates currently serving as The Daniel Jordan Fiddle Foundation adult self-advocate advisors are: Alex Bond, Stephen Daly, Amy Gravino, Susan Meyer, Jimmy Scancarella and T. Paul Voss. Each of these individuals has had opportunities to represent The Daniel Jordan Fiddle Foundation; for example at: advocacy events; in the media; in pieces they have written for our publications; and social media; and at conferences and round-table think tanks to name a few.

In addition, The Daniel Jordan Fiddle Foundation has proudly partnered with Autism organizations led by self advocates such as GRASP, ASAN and ARI and the programs, initiatives and awareness our partnerships have created are ones we take great pride in, especially because these affiliations and valued collaborations are driven by those who are on the front lines of Autism advocacy.  We are also very proud of the fact that these collaborations are serving the needs of the constituents that these organizations represent.

The power of advocacy is potent.  Even one voice can make a difference as we have often seen through history.  But the power of advocacy, like any other kind of power, must be cherished; and it should be used with careful consideration, respect, tolerance and positivity. Self-advocates should not be engaged as poster mannequins but as valued voices who drive the cause they represent. Groups working to achieve societal change and better lives should not vie against one another to be top-dog but rather support and respectfully disagree while mutually encouraging community engagement on the issues they care about. In these best case scenarios the power of advocacy is at its finest.Image

A Post From Amy Gravino, Member of The Daniel Jordan Fiddle Foundation Self Advocate Advisory Board

 

The inspiring story of Amy’s vacation to Italy this summer will surely leave you longing to take your own adventure.  Although, just like everyone else, people living with Autism, may or may not enjoy traveling, we encourage those who do to explore places of interest and expand their horizons…Enjoy!

Barefoot in Italy: The Travels of a Food-Loving Aspie
by Amy Gravino

I can hear the bells.

Can’t ya hear ‘em chime?

I did.

For three weeks I heard the bells, in the town of San Marco Argentano in Calabria, Italy, where I visited family this past summer. It takes some getting used to—the sound of loud church bells ringing on the hour, every hour, accompanied by quieter tones on the quarter and half hours.  It’s an almost nightmarish proposition especially for a person on the autism spectrum, at least until the bells become a part of your daily routine.

This trip to Italy was my fourth thus far, but it was a “first” in many ways. When I was growing up, during the summer breaks from school, my parents and I would go on vacation all over the country, from the East Coast to the West. But it never really was a “vacation” for me, because I was constantly overwhelmed by the noises, the lack of routine, strange beds to sleep in, and sights unfamiliar. This made traveling an entirely unpleasant experience for me—and for our family.

The day that things began to change was the day that I learned how to pack my suitcase—which previously my mother had had to do for me. When you’re a kid on vacation, you never have much in the way of control, as you have to go where your parents want to go, when they want to go. 

Learning how to pack my suitcase suddenly gave me control over some element of my travel. I did it by finding a system that worked for me, a system of clearly labeled plastic storage bags for different items, and as a result, the stress of packing disappeared completely.

So when I finished my Masters degree and my mom and I made plans to travel to Italy, I could not have been more excited.

From the third floor of my mother’s cousin’s townhouse, we surveyed the goings-on in the street below. The church across from their building was one of at least five in San Marco, and was the source of the loudest bells that we heard each day. Jagged cobblestones lined the way into the main piazza, which bustled with teenagers, old men congregating in front of the Bar Centrale, and shopkeepers standing on the sidewalks waiting for customers.

There were several green grocers within walking distance of where were staying, but my favorite was the closest one, adjacent to the church. Every day, I would admire the deep red tomatoes on display, along with the rainbow of produce surrounding them: Peppers, zucchini, beans, oranges, apples, and more.  

As beautiful as the vegetables were, they tasted even better. You hear a lot in the news about “eating locally,” which means eating fruits and vegetables that are grown in your area, instead of ones from other parts of the world that are then shipped to supermarkets.

 In the United States, we have Farmers Markets that let us buy locally, but most people do their shopping at the supermarket. In Italy, it is the opposite—people buy vegetables mostly from the green grocer and do not get them at the supermarket.

I will never forget how sweet those red tomatoes were once I finally got to eat them.  Or how crisp and green the Romaine lettuce was, the leaves of which were washed and eaten completely plain at dinner, one at a time, or how juicy and ripe the nectarines were that we had for dessert.

Because I saw the difference between what I buy in the supermarket at home and what I ate in Italy, I gained an appreciation for fresh, local food that I didn’t have before. Now, it’s become important to me not just what I put in my body, but where the food I put in it comes from.

For a person with Asperger’s Syndrome, who may have many food sensitivities and preferences, it can be difficult to eat healthy. Finding out where food comes from and choosing when and where to buy it is another way to give a person on the spectrum an element of control over this facet of his or her life.

In Italy, one feast at the dinner table often gives way to a different feast later that night in the streets. San Marco was no exception, and the Feast of St. Anthony of Padua took place during the first week of our trip. My mother, her cousin, and his wife readily went out into the crowd, but I stayed behind. The prospect of so much noise and so many people in a tightly packed area proved too daunting, and I knew that if I went, I wouldn’t be able to handle it.

The booming crackle-pop! of multicolored fireworks that capped off the night validated my concerns, and then some.  I shuddered and cringed at every explosion, which somehow seemed louder than any fireworks I’d heard before.  My only source of relief was that I was not outside entrenched in the mass of feast-goers when it was happening.

Sensory issues are something that every person on the autism spectrum has to consider when preparing to travel. Planning ahead for a situation like the Feast of St. Anthony might have helped me to take a chance in venturing out, especially if I had a specific, set “exit route” that I could use to escape from the crowd if it became necessary.

It takes time to get used to many new “firsts” on a vacation—your first flight, first hotel bed, and the many new foods, sights, sounds, and people that you will encounter. Being able to travel is an invaluable skill, as well as something that gives you opportunities that you otherwise never would have had staying at home. Whether it’s the sweetness of tomatoes or the unpaved cobblestones moving under your feet, being on the autism spectrum doesn’t have to mean missing out on the fun of vacation.

Everyone deserves a chance to hear those bells chime.

 

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