tag:blogger.com,1999:blog-34493268139248135172024-03-13T11:29:45.668-07:00People FirstA Resource Directory for People with Disabilities. Unknownnoreply@blogger.comBlogger27125tag:blogger.com,1999:blog-3449326813924813517.post-36848845016694993152023-01-19T20:09:00.003-08:002023-10-06T20:53:46.603-07:00International Day of Acceptance 2023<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPg4c2ZAjupB4pmw1BhznH520nyhBHGHpXAeCA49PULcgoNoAgxmKO-JruC67Ztd1mT5FzQ-KO2A5HOtwP2pSxeRLecqYT5FM-du2YymgZZ3AUBgNtaF7ztRcCEM4ap3SpsaOfgpYXEGliGFihaPWiZta671z31LS_UvAks0N33gLAvkut4WTBGi6K5g/s558/3436D8D4-3E7A-4786-8C02-2010E5DA8370.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="558" data-original-width="555" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPg4c2ZAjupB4pmw1BhznH520nyhBHGHpXAeCA49PULcgoNoAgxmKO-JruC67Ztd1mT5FzQ-KO2A5HOtwP2pSxeRLecqYT5FM-du2YymgZZ3AUBgNtaF7ztRcCEM4ap3SpsaOfgpYXEGliGFihaPWiZta671z31LS_UvAks0N33gLAvkut4WTBGi6K5g/s320/3436D8D4-3E7A-4786-8C02-2010E5DA8370.jpeg" width="318" /></a></div><br /><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;">#DayOfAcceptance is observed annually on January 20 to unify the acceptance of people of all abilities. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;">This holiday originated to celebrate the life of Annie Hopkins and her movement to bring about social acceptance of disability. Annie created the wheelchair heart symbol and introduced us to the company she started with her brother, Stevie. <a href="http://3ELove.com">3ELove</a> encourages us to follow the three E’s—Embrace Diversity, Empower Acceptance and Love, Educate the Community—we always have an opportunity to change perceptions by initiating dialog. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Maybe you didn’t know…my mom was a paraplegic. She was my North Star, my role model. She </span><span style="font-family: UICTFontTextStyleBody;">embraced life with Pride. </span><span style="font-family: UICTFontTextStyleBody;">It was because of her that I chose a profession in health care, why I first became involved in advocacy and it was her gracious and loving spirit that taught me to nurture and care for others.</span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;">When I first decided to share my writing with the world (because, truly, I’ve written for as long as I remember) I chose to contribute to the Disability Narrative because Mom was looking for media that spoke to her experience and…it just wasn’t there.</span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;">My first writing project, The Roll Models Saga, features diverse characters. My main character is a paraplegic. His girl has Multiple Sclerosis. They live life to the fullest, with Pride. They’re Roll Models—like my Mom. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Mom’s life wasn’t easy. We lived in the country in the 1970’s—farm girls—with crops to tend and food to preserve. People didn’t embrace disability—they kind of shunned it. Kids who had disabilities didn’t go to school. They stayed home or attended school in residential facilities. People with disabilities got sent to nursing homes to live, until Olmstead, but I digress.</span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;">#DayOfAcceptance means that people like my mom are seen—THEY are spoken to at doctor’s appointments, in restaurants. They make decisions and are successful professionals, far exceeding the low expectations someone predicted at some point in their lives. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;">#DayOfAcceptance means we’re collectively seeing people with disabilities—as people. We are all uniquely different and it’s exciting to see the rest of the world embracing diversity. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;">For Annie. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;">For my mom. </span></p><p class="p1" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 29px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;"></span><br /></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Thanks for joining me as I celebrate #DayOfAcceptance2023!</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;"><br /></span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 23px; font-stretch: normal; line-height: normal; margin: 0px; text-size-adjust: auto;"><span class="s1" style="font-family: UICTFontTextStyleBody;">Be the one to start the conversation. </span></p><b><div><b><br /></b></div><div><b><br /></b></div><br /></b><div><b>XOXO</b></div><div><b>~nise</b></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-59535519343718126722019-12-16T21:30:00.002-08:002023-10-06T20:55:04.846-07:00Exciting News!<center>
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<span style="color: #454545;">So, this update is horrendously overdue.<o:p></o:p></span></div>
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<span style="color: #454545;">It’s been a long time since I’ve tended my blogger, but,
so much has been going on behind the scenes! <o:p></o:p></span></div>
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<span style="color: #454545;">A (long) while back we were visited by my friend, Alec
Frazier. Remember him? The Autistic Super Hero, whose ambition knows no bounds…
I’m not joking, Alec is a mover and a shaker who grabbed life by the horns and
is currently leading it all over the <st1:state w:st="on"><st1:place w:st="on">District
of Columbia</st1:place></st1:state>, or anywhere else his heart
desires. <o:p></o:p></span></div>
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<span style="color: #454545;">Alec has been an advocate for People with Disabilities since
he was eight years old. He runs his own disability advocacy firm, <a href="https://www.nothingaboutuswithoutus.net/" target="_blank">AutisticReality</a>. Alec’s work at Autistic Reality includes public speaking, lobbying, peer
advocacy, and publicity, as well as many other forms of advocacy that enhance
the representation of the disability community. He is the copyrighted author of
two books, Without Fear: The First Autistic Superhero and Veni! Vidi! Autism!. He
is the Managing Editor of Stories About Us, an anthology of works by disabled
authors, and a pop culture critic for Flickering Myth, Starburst Magazine, and
The Deadbeat Critics.<o:p></o:p></span></div>
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<span style="color: #454545;">I mention Alec, because he is the impetus for the rest of
this update where I tell you that my monstrously long Twilight Fan Fiction,
Impact, has received the backing to be published in its entirety as The Roll
Models Saga.<o:p></o:p></span></div>
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<span style="color: #454545;">In February of 2018, Alec approached me about a special
writing project he was involved with—<a href="http://www.storiesaboutus.org/" target="_blank">Stories About Us</a> a national initiative to publish new fiction from specific
communities—focusing first on creative writers from the Disability Population,
in an effort to enrich and connect closer with the entertainment industry. This
new publishing imprint was begun by an advertising executive, Jd Michaels, who
began working with the Disability community through EIN/SOF Communication's
Lights! Camera! Access! events.<o:p></o:p></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikRv4WMB4v_kCqxYEECXwFf1O5N2fqymXkPdcsa2NjgGr3RIMFV08XDeqE8DduELxWOsGKi_whATqwK2c8QMASoU1S7d8MXDMq_hdygNG42gzjUAbJadXMx2X1luB8xkcMdmDYH-UvxjDk/s1600/Stories-about-us-logo-300x300.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="300" data-original-width="300" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikRv4WMB4v_kCqxYEECXwFf1O5N2fqymXkPdcsa2NjgGr3RIMFV08XDeqE8DduELxWOsGKi_whATqwK2c8QMASoU1S7d8MXDMq_hdygNG42gzjUAbJadXMx2X1luB8xkcMdmDYH-UvxjDk/s200/Stories-about-us-logo-300x300.jpg" width="200" /></a></div>
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<span style="color: #454545;">As some of you may know, I was raised by a parent who had
a disability, have been a disability ally, working in direct care my entire
career and identify as a member of the disability population, myself. <o:p></o:p></span></div>
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<span style="color: #454545;">I had the immense pleasure of sharing my home with my mom
during the final years of her life. As is common with any health condition,
there were good days and there were bad days. On the good days, we had
adventures—the movies, the mall, girlie things like doing our nails or hanging
out with her lifelong hair dresser! On the not-so-good days, we watched lots of
movies and Mom’s frustration was that there were very few characters who like
her, lived with a disability. Since we couldn’t find a lot of disability
representation on TV, we created our own adventures—putting thoughts to paper
and sharing them with our fandom friends—one chapter at a time.<o:p></o:p></span></div>
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<span style="color: #454545;">The Roll Models Saga was born!<o:p></o:p></span></div>
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<span style="color: #454545;">With chapter postings came reviews. It was exciting to
read incidents where Impact opened readers’ eyes—we sat and read them together,
you know. We were delighted to connect with readers who made their homes more
Visitable during a remodel, or whose social behavior changed because they
became a little more aware of the people around them. <o:p></o:p></span></div>
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<br /></div>
<div style="margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<span style="color: #454545;">It was rewarding to share information with others who, as
a result, acquired funding for durable medical equipment, or personal attendant
services, or home modifications—the very foundation for the creation of this
blogger. We initiated change, in small ways, with this lil story of ours.<o:p></o:p></span></div>
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<span style="color: #454545;">Fast track to today—Mom is, sadly, no longer with us and
after a ten year long wait, the first volume of The Roll Models Saga is going
through final edits. My team, The Roll Models, is working hard to make
everything just right so our readers can have the most incredible experience. <o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<br /></div>
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<span style="color: #454545;">The kind of experience I had when I touched our book for
the first time—the tangible reward of having this masterpiece in my hands—it is
amazing. It’s gorgeous! You won’t want to put it down. I’ve had a proof copy in
my hands for a few weeks and I can’t stop touching it. It feels so good! <o:p></o:p></span></div>
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<span style="color: #454545;">You’ll see.<o:p></o:p></span></div>
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<br /></div>
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<span style="color: #454545;">It’s been so incredible working with Alec and Jd (who
left a long-established advertising career to devote his attention and talents
to this wonderful project.) I feel so fortunate, that these incredible,
generous people at Stories About Us are so committed to putting this book in
your hands. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: #454545;">I hope you’ll join us Valentine’s Day weekend for a
release day party with lots of fun prizes, including a signed, original proof copy of the book with all the line edits high-lighted</span><span style="color: #454545;">—</span><span style="color: #454545;">only two of these exist! </span><span style="color: #454545;">We have a ton of other awesome goodies, too. </span></div>
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<span style="color: #454545;">I can’t wait for you to get to know Steven and Abby in a
way you couldn’t before, as we start from the beginning of Steven’s journey, on
that fateful day when everything he knows is Shattered.<o:p></o:p></span></div>
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XOXO,</center>
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~nise</center>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-49403473804436621892015-07-26T12:00:00.000-07:002015-07-26T12:00:18.875-07:00Celebrating Twenty-five Years of the Americans with Disabilities Act<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI6OsPmNjtcOSnbkNEt5TgG8NJc1yNbXLhzWr6ZaAkzBB6YVKfXP19aWpOQRvPJHAlI2pTlcQrvArRPg-dtWHz_-VAr0_QgPhdBBmlRO6Ch3ulD2fjFLJ__kR-ZalZqxBrGXRB79QbNBHJ/s1600/WC+USA+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI6OsPmNjtcOSnbkNEt5TgG8NJc1yNbXLhzWr6ZaAkzBB6YVKfXP19aWpOQRvPJHAlI2pTlcQrvArRPg-dtWHz_-VAr0_QgPhdBBmlRO6Ch3ulD2fjFLJ__kR-ZalZqxBrGXRB79QbNBHJ/s320/WC+USA+2.jpg" width="320" /></a></div>
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On July 26, 1990, President George H. W. Bush signed the Americans with Disabilities Act into law, making it the most comprehensive piece of legislation written to protect the rights of individuals who have disabilities. Sadly, twenty-five years later, there are still many Americans who have no idea what the law is, or why it's significant. <br />
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I suppose I'm passionate about the ADA because it's affected the lives of so many people I hold dear, but I'd like to think that it would hold significance for me even if it weren't so important to the ones I love.<br />
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My mother was born in 1936 and at seventeen years of age she had her first clinically identifying episode with what would later be diagnosed as Multiple Sclerosis, a debilitating disease of the central nervous system. Despite the fact that she was very self-conscious of her mobility issues, Mom lived her entire adult life gracefully and with dignity, as a person with a disability.<br />
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When Mom became disabled, there were no laws to protect her civil rights. After a lengthy absence her freshman year of college, mom went on to graduate with her class and secured a job as an elementary educator. She taught at a school that incorporated ungraded classrooms as part of their educational program--an atmosphere where students were grouped, based on their ability and level of work, rather than chronological age. Mom left her teaching job when she was expecting me, and wasn't ready to return until five years later--after my sister's birth. The exascerbations and remissions of the MS ebbed and flowed, but sadly, when Mom was ready to return to her teaching job, she could no longer legibly write or sign her name and she was turned away because of her physical limitations. One of Mom's greatest disappointments in life was that she was never able to return to the job she loved.<br />
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Today, the Americans with Disabilities Act protects workers with disabilities and ensures that they are provided with reasonable accommodations so they can continue working. Had the ADA been signed into law twenty years sooner, Mom's life might have been very different.<br />
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I'll never forget my first act of grass roots advocacy. The ADA hadn't yet been drafted, and polite letters failed to "encourage" our local library to install a lift to provide access to our century-old library. I had no clue, at the time how empowering advocacy could be. When writing letters to the library fell on intentionally deaf ears, we called up our state representative and the local media, inviting them to our "assembly". I helped my friend dress up in her Sunday best, escorted her on foot as she drove her Amigo buggy across town and we stood outside the library, explaining to the local newspaper and television station that, while it was wonderful the library offered a free service to deliver books to library patrons with disabilities, it was impossible to know what was even available at the library without first being able to get inside. Within weeks, a letter from our thoroughly chastised library came to my friend's home, inviting her to discuss her ideas so that the library could better meet the needs of everyone in the community. <br />
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I remember once thinking that the ADA was like a magic key that could open the doors to the kingdom. I grew up in a small, rural community where not one business entity was accessible. The old idiom "being on the outside looking in" could have been written expressly for individuals with disabilities, because before the ADA, that's largely how life was, how it is still, in some parts of our country, but because of the ADA, those people on the outside looking in have the tools to bring about change in their communities. The ADA accessibility guidelines ensure that individuals with disabilities have equal access and if they don't, the ADA makes it possible for an individual with a disability to file a discrimination suit against non-compliant businesses, and often a positive outcome occurs.<br />
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In 1985, my son was born with a developmental disability. Thanks to safeguards put into place by the ADA when he was just five years old, he is gainfully employed by an employer who has made accommodations for his specific needs. Because of the ADA my son is able to be a self supporting contributor to our community. <br />
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I understand that the ADA doesn't have the same impact on individuals who aren't personally affected by disability, but it's a law that benefits us all. I can remember a day when many places of business had steps, when doorways to public restrooms were so narrow one could barely walk through, when public transportation wasn't available to everyone. Equal access ensures that every person can enter an establishment and fully participate; not just the guy who pushes a wheelchair, but the mother pushing a stroller or a courier pushing a hand truck, as well.<br />
<br />
While I can remember a life before the ADA was in place, I can't imagine life without it for the people I care about. I am grateful to every individual involved in drafting and enacting this life-changing piece of legislation, and had the express pleasure of once spending a day with someone who was instrumental in its birth.<br />
<br />
Our nation might be celebrating the silver anniversary of the ADA today, but those with disabilities celebrate the ADA every, single day.<br />
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To learn more about the history of the ADA, check out the Disability Rights Education and Defense Fund's historical summary of the birth of the ADA, years before its 1990 consummation-<a href="http://dredf.org/news/publications/the-history-of-the-ada/" target="_blank">The History of the ADA, A Movement Perspective by Arlene Mayerson.</a> Arlene's detailed, behind-the-scenes account of the steps that led to the legislation we now know as the Americans with Disabilities Act is intriguing and eye-opening. As a society, we take so many things for granted and I don't think many of us consider the exhaustive steps that are sometimes necessary to bring about change. <br />
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3449326813924813517.post-63700227840038425732015-05-27T18:40:00.003-07:002015-05-27T18:44:59.572-07:00World MS Day, 2015<center style="text-align: justify;">
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px; text-align: start;">On this day, World MS Day, I'd like to pay tribute to my own personal roll model, my mother.</span></div>
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<span style="font-size: 12.8000001907349px;">For over sixty years, Mom lived life as a person who had a disability, with both dignity and grace.</span></div>
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<span style="font-size: 12.8000001907349px;">Although it took thirty years to receive a proper diagnosis, she had her first clinically identifying event with MS on Thanksgiving Day, 1953. Mom was just 17, a freshman in college, waking up that morning completely paralyzed on her right side.</span></div>
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<span style="font-size: 12.8000001907349px;">I can't begin to imagine her devastation or fear--the uncertainty of what her life held.</span></div>
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<span style="font-size: 12.8000001907349px;">I can't imagine my grandfather's heartache, having lost my mother's only sibling to a childhood disease and his young wife to cancer. What a terrifying time it must have been for him as a parent, unable to do a single thing to help his only remaining family member.</span></div>
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<span style="font-size: 12.8000001907349px;"> Back then, MS was one of those illnesses shrouded in mystery and our tiny, rural hospital diagnosed Mom with Poliomyelitis and sent her home.</span></div>
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<span style="font-size: 12.8000001907349px;">As often occurs with Polio, Mom eventually recovered her mobility and was able to return to her college activities, graduating with her class, despite missing a significant amount of class time.</span></div>
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<span style="font-size: 12.8000001907349px;">Throughout her life, the severity of her condition ebbed and flowed. As her mobility began to decline, a string of additional mis-diagnoses were thrown at Mom. She was treated for a seizure disorder by a physician who mistook her clonus tremors as seizures; treated for low blood pressure by a doctor who couldn't find any other cause for the extreme heat prostration she experienced after being in the sun and had her knees operated on by a doctor who swore the foot drop she experienced was a knee joint problem.</span></div>
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<span style="font-size: 12.8000001907349px;">In the autumn of 1983, a new neurologist came to town. A physician who took one look at the puzzle pieces, ran one test and gave us the definitive diagnosis that had eluded my mother nearly 30 years.</span></div>
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<span style="font-size: 12.8000001907349px;">Mom never reaped the benefits of the disease modifying drugs many MS patients have access to today, but </span><span style="font-size: 12.8000001907349px;">thankfully, wonderful organizations like the National Multiple Sclerosis Society exist, organizations that are working relentlessly to find a cure for this disease that attacks young people in the prime of their lives. </span><br />
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<span style="font-size: 12.8000001907349px;">Hopefully, one day the mystery <i>will</i> be solved.</span></div>
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<span style="font-size: 12.8000001907349px;">A guest at Mom's funeral told me they were sorry she lost her battle with MS. She lived a beautiful life, a happy, content life. For more than sixty years, she lived her life with MS.</span></div>
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<span style="font-size: 12.8000001907349px;">She didn't lose the battle, she triumphed, despite her disease and I can't think of anyone who I admire more.</span></div>
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#StrongerThanMS</center>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-20979927593959686262015-01-13T18:22:00.002-08:002015-01-13T18:22:26.299-08:00Curious? Just Ask!<center style="text-align: start;">
One of my oldest, dearest friends has a child with neurofibromatosis. She's shared this information to help raise awareness about the disorder and I'm asking you to please pass it on.</center>
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I'm sure you've seen the pictures of Reggie Bibbs on the internet recently; or perhaps it was a picture of people wearing the awesome tee-shirts with a drawing of Reggie's face on them...</center>
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Want to know what it's all about?</center>
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Just ask!</center>
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The campaign to promote awareness of Neurofibromatosis has exploded. </center>
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To help kick off their world tour, the Just Ask Foundation is running an ad campaign to promote awareness of Neurofibromatoses, genetically determined disorders of the nervous system that affect more than 100,000 Americans.</center>
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The Just Ask foundation is a 501(c)(3) entity that relies on the generosity of others to continue their work. You can help raise awareness by sharing their advertisements, or donating directly to their organizations. All donations are fully deductible.</center>
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I absolutely love this foundation's approach! One of the most demoralizing things we can do around someone who has a disability is to point, stare, whisper... or even worse, to teach our children it's wrong to ask questions when they want to understand why someone looks or acts differently. Most people would prefer you just ask, and many are very open about their disability. Ignorance begets pity, where knowledge begets compassion.</center>
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Want to know more about neurofibromatosis? Just Ask!</center>
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<a href="http://www.justaskfoundation.org/">http://www.justaskfoundation.org/</a></center>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-25252801957073774142014-12-30T17:48:00.001-08:002014-12-30T17:50:37.220-08:00Attention all wheelchair users!<div>
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">I've been following the Accessible Airline Access Project and received an update from them recently.</span></div>
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">I know a number of people who have had their assistive devices broken or damaged by airlines, from mobility devices to insulin pumps...</span></div>
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">If you've got information to share on such an experience, please contact</span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;"> </span><a href="https://www.facebook.com/lollardfish" style="background-color: white; color: #1155cc; font-family: arial, sans-serif; font-size: 13px;" target="_blank">David Perry</a>,<span style="font-family: Verdana, sans-serif; font-size: x-small;"> </span><span style="font-family: Verdana, sans-serif;">who states<span style="background-color: white; color: #222222; font-size: x-small;"> </span></span></div>
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">"I'm collecting stories of people who have had their wheelchairs or other assistive mobility devices broken by airlines. </span><a href="mailto:Lollardfish@gmail.com" style="background-color: white; color: #1155cc; font-family: arial, sans-serif; font-size: 13px;" target="_blank">Lollardfish@gmail.com</a><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">. Please share. I'd like to put something together on this."</span><br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">Every comment adds weight to the need for legislation to be passed ensuring equal airline access for all.</span></div>
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px;">For more information on the Accessible Airline Project, visit </span><span style="color: #222222; font-family: arial, sans-serif;"><span style="font-size: 13px;"><a href="http://allwheelsup.org/wp/">http://allwheelsup.org/wp/</a></span></span></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-39106591670273375382014-10-19T10:47:00.001-07:002014-10-19T10:55:36.663-07:00Thanks for helping me reach 10,000 hits!<center style="text-align: justify;">
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In appreciation for everyone visiting and sharing my blog, I've posted a Rafflecopter on my author Facebook.</span></center>
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Up for grabs is another awesome Impact-themed prize pack filled with goodies from 3ELove, the Wheelchair Heart people.</span></center>
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<span style="font-family: Verdana, sans-serif;">The contest begins 10/20/2014 at 12:00 a.m. EST</span></center>
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<a class="rafl" href="http://www.rafflecopter.com/rafl/display/ac2524a44/" id="rc-ac2524a44" rel="nofollow">a Rafflecopter giveaway</a>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-64056360997483740862014-10-15T20:36:00.001-07:002014-10-15T20:38:08.537-07:00Have you signed the Airline Accessibility Petition?<center>
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<span style="font-family: Verdana, sans-serif;">Dear friends:</span></center>
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<span style="font-family: Verdana, sans-serif;">I've been following the petition to modify the Air Carrier Access Act; a campaign which would provide air carrier access to all individuals who use wheelchairs while allowing those individuals to remain in their own, customized wheelchairs during flight rather than being forced to transfer into a passenger seat in the plane.</span></center>
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<span style="font-family: Verdana, sans-serif;">I'd like to ask you, my readers, to please share and disseminate the following press release to your local media, sign the petition and write a letter to your local legislator. Word of mouth is one of the most effective forms of grass roots advocacy. If we all speak up, our voices will be heard.</span></center>
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<span style="font-family: Verdana, sans-serif;">Vicki Jurney- Taylor who started the petition has done a spectacular job of explaining the focus of the document, so rather than be redundant, I'll let her take it away.</span></center>
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<span style="font-family: Verdana, sans-serif;">Thank you, in advance for your support of this very important issue.</span></center>
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<span style="font-family: Verdana, sans-serif;">Bests,</span></center>
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<span style="font-family: Verdana, sans-serif;">~nise</span></center>
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: start;">Dear Supporters:</span></div>
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We are ready to take the next step in our push to make airline travel more accessible to wheelchair users, and once again we need your help. Please copy and paste the media/press release below into an email and sent it to EVERY Newspaper and Television News Station that you can. Your help in doing this will be VERY powerful in achieving success of our campaign! Here is the media/press release:</div>
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FOR IMMEDIATE RELEASE</div>
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Media Contacts: Vicki Jurney-Taylor, <a href="tel:210-845-4443" style="color: #1155cc;" target="_blank" value="+12108454443">210-845-4443</a>, email: <a href="mailto:vjurney-taylor@gmail.com" style="color: #1155cc;" target="_blank">vjurney-taylor@gmail.com</a></div>
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Michele Erwin, <a href="tel:917-414-0897" style="color: #1155cc;" target="_blank" value="+19174140897">917-414-0897</a>, email: <a href="mailto:merwin830@gmail.com" style="color: #1155cc;" target="_blank">merwin830@gmail.com</a></div>
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<strong>Petition For Wheelchair Accessibility On Aircraft Draws Huge Support</strong></div>
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San Antonio, TEXAS---Two Texas women have started a petition requesting that people with severe disabilities be allowed to remain seated in their customized wheelchairs, during air travel, for health and safety reasons. The petition, which has garnered over 21,500 signatures in two months, will be delivered to President Obama, Congress, the major airlines, aircraft manufacturers, and disability rights organizations.</div>
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Vicki Jurney-Taylor, a person whose disability requires her to use a custom fitted power wheelchair and ventilator for independence states, "As it stands now, the Air Carrier Access Act says that I must be manually removed from my wheelchair and carried to a standard passenger seat which does not provide the support that my body needs nor the electricity to power the my vent. Due to my disability, my neck and torso lack muscle strength for control, so flying while not seated in my wheelchair is out of the question."</div>
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Presently, 1.6 million people use wheelchairs in the United States . Of these, over 200,000 use power chairs. The population using wheelchairs is just increasing due to the fact that people with disabilities are living longer. Unfortunately, most wheelchair users presently are forced to travel by motor vehicle due to airplane inaccessibility. In addition, in 2008, one particular airline spent over $1 Million in wheelchair repairs. This can be avoided by not having bag handlers mishandle expensive power chairs that cost between $20,000- $60,000. Also, this figure excludes the expenses that airlines outlay every year to disabled travelers in lawsuits, free tickets, and additional items to prevent lawsuits.</div>
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<br /></div>
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Michele Erwin, the founder and Director of All Wheels Up, Inc.( a 501c3 nonprofit organization whose mission is to advocate for accessible wheelchair flight, with focusing on crash testing wheelchairs for commercial flight), says, "A large majority of the work and reports have already been conducted, regarding crash testing wheelchairs. The FAA would only need to expand on the research already done from the company Q'straint, whose restraining systems have passed the 20 G crash test, while all air craft passenger seats have only passed a 16 G crash test. Due to this study alone, the FAA is excited to work on the crash testing wheelchairs for commercial flight. In addition, hundreds of wheelchair models have already undergone extensive crash testing by the RERC WTS (Rehabilitation Engineering Research Center on Wheelchair Transportation Safety) due to the WC18 regulation funded by the NIDRR (National Institute on Disability and Rehabilitation Research). The studies were completed at the University of Michigan Transportation Research institute. These tests conducted show all chairs have also passes a 20 G frontal crash test, again surpassing the 16G crash test standard for commercial airline seats."</div>
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<br /></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: justify;">
For more information on the petition, go to: <a href="http://petitions.moveon.org/sign/wheelchair-access-on?mailing_id=25737&source=s.icn.em.cr&amp%3Br_by=8151355.&r_by=11229252" style="color: #1155cc;" target="_blank">http://petitions.moveon.org/<wbr></wbr>sign/wheelchair-access-on?<wbr></wbr>mailing_id=25737&source=s.icn.<wbr></wbr>em.cr&amp%3Br_by=8151355.&r_<wbr></wbr>by=11229252</a></div>
<div style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: justify;">
For information on All Wheels Up, Inc., go to: <a href="http://allwheelsup.org/wp/" style="color: #1155cc;" target="_blank">http://allwheelsup.org/wp/</a></div>
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<br /></div>
<strong style="background-color: white; text-align: start;"><div style="color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: justify;">
<strong>~~END~~</strong></div>
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<strong><br /></strong></div>
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<span style="color: #222222; font-family: arial, sans-serif; font-size: 13px;"><br /></span></div>
</strong><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: start;"><div style="text-align: justify;">
Again, without your help, none of this can succeed.</div>
</span><div style="text-align: justify;">
<span style="color: #222222; font-family: arial, sans-serif; font-size: 13px;"><br /></span></div>
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: start;"><div style="text-align: justify;">
Thank you!</div>
</span><div style="text-align: justify;">
<span style="color: #222222; font-family: arial, sans-serif; font-size: 13px;"><br /></span></div>
<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: start;"><div style="text-align: justify;">
Vicki Jurney-Taylor</div>
</span></center>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-66132976877618571402014-10-09T07:07:00.001-07:002014-10-10T18:58:44.718-07:00Rafflecopter!!<center style="text-align: justify;">
We're less than 100 page views away from 10,000 hits! I'm blown away by the response to the site and want to reward my readers for visiting.</center>
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</center>
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As soon as we hit the magic number I'll host a rafflecopter for a swag pack purchased from <a href="http://www.3elove.com/collections/all-tag" target="_blank">3ELove</a> on <a href="https://www.facebook.com/dacharlesauthor?ref_type=bookmark" target="_blank">My Facebook Community</a></center>
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</center>
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Stay tuned for details and good luck!</center>
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</center>
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<img alt="post signature" class="left" src="http://i1216.photobucket.com/albums/dd368/nise7465/Siggy.jpg" height="134" width="320" /></center>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-37159114408737512382014-09-25T22:23:00.002-07:002014-09-25T22:25:03.387-07:00Part Three- Questions for Alec, an Interview on Living Life with Autism.<div style="text-align: justify;">
My apologies for the late post, some personal stuff came up that couldn't wait.</div>
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<div>
Welcome to part three of Alec Frazier's interview.</div>
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<b>What kind of
accommodations do you use in dealing with your disabilities? Do you require
anything specific in your working or learning environment that might be
beneficial for others to learn about? Is there a special piece of software or a
special assistive device that is really important for you?<o:p></o:p></b></div>
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<b><i>Dragon NaturallySpeaking Premium
1, Nuance Commincations.<o:p></o:p></i></b></div>
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<i>These days, I use a
few accommodations, but not as many as you may think. Crucial to doing anything
is writing. However, as I have mentioned, I have two writing disabilities. As a
result, I use dictation software to speak into a voice-activated system which
renders my speech as text on the computer. The current software I use is Dragon
NaturallySpeaking Premium 13. In addition to working with a word processor, it
also works with emails, Facebook, the Internet, and just about anything I do on
the computer. Another accommodation, one I use at school, and occasionally
elsewhere, is having notes provided to me by someone else. That is because of
the writing disabilities. I also have time and a half and a quiet, secluded
location for tests at the school. Often this goes hand-in-hand with use the
voice-activated software. One accommodation that I have on paper is the right
to have electronic textbooks provided for me. These e-texts are then fed into a
reading software that reads it back to me. However, I have also become quite
adept at speed reading, which is been sufficient for the last couple years.
Believe it or not, that is all the accommodation that I have at the moment.<o:p></o:p></i></div>
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<b>What are the greatest
barriers for you as a person who is autistic? These differ greatly from the
physical barriers we often associate with someone who has a disability.<o:p></o:p></b></div>
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<i>The greatest barriers
for myself and several other autistic individuals is that we do not perform
socially the same way that others do. This entails a wide variety of behaviors.
Sometimes we do not understand things, and often make fun of them for existing,
making us seem like the bullies. What I mean by making fun of people for
existing is that we often find simple things silly, such as people’s names, or
the way they dress. I am not trying to say that an autistic person’s lack of
social finesse is their fault, but rather that we end up perceiving things
differently than the rest of the population, and this can cause difficulties.
It is this difference in perception and the ensuing troubles that is one of the
greatest barriers for an autistic person. Of course, we also do not make
friends as well as most people do, as was mentioned earlier. Therefore, when
many accommodations with disabilities would include a ramp or an automatic
door, for an autistic person, they would include patience and a willingness to
understand.<o:p></o:p></i></div>
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<b>Tiffany would like to
know how much of a change you have seen from when you were a child to now,
about the way people handle the news of their child having autism or a disability.
You and I have talked about later in life diagnoses of people on the autism
spectrum and even misdiagnoses of other neurodiverse conditions that are later
attributed to autism. Can you tell us what you’ve learned about how social,
sensory and stress factors that didn’t formerly exist are now causing
individuals whose behaviors might have been seen as odd twenty years ago to
receive an autism diagnosis?<o:p></o:p></b></div>
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<b><i>Alec Frazier and his brother Nick
at Waterworld in <st1:place w:st="on"><st1:state w:st="on">Colorado</st1:state></st1:place>
in the 1990s.<o:p></o:p></i></b></div>
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<i>What I have to say on
this matter will be very comforting to parents of younger autistic children. I
have seen dramatic, almost unbelievable improvement since I was a child. For
example, I used to be almost completely incapable of understanding social cues,
and the ramifications could often be quite severe. Nowadays, I not only get
social cues, but I help people understand them and generate several myself! In
addition, I used to throw temper tantrums quite often. Nowadays, that never
happens. The last time I was physically violent towards someone was in
self-defense almost ten years ago. Nowadays, I believe that belligerent
violence is never the answer. Parents need to be able to educate their children
on proper social cues, proper behavior, and other important matters. Sometimes
it helps if the autistic child believes that they have discovered the proper
method of behaving by themselves. Having autistic children talk about their
problems with their peers as equals is always important. It is also most
important never to condescend to your child or in any way make them feel like
they are less than you. Be a fun parent! Do activities with them! Always tell
them that you love them! It also doesn’t hurt to tell them that they are not
alone in the world of autistic people, and that they share their beautiful
minds with people such as Thomas Jefferson, Albert Einstein, Nikola Tesla, Bill
Gates, Leonardo da Vinci, and many others who have been quite successful in
life!<o:p></o:p></i></div>
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<i>Remember that being
autistic is not a fault, and no one is to blame for the child’s condition.
Remember that the condition is genetic, and staying away from various
substances or vaccinations would not have prevented it. Also remember that you
can empower your child to live a more productive life! Just because someone is
a nonverbal autistic person does not mean that they are stupid. I have met many
nonverbal autistic people who are quite articulate, just in different ways.<o:p></o:p></i></div>
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<i>Many people believe
that autism is caused by vaccinations or something in the water, or something
else environmental. That is complete hogwash. The rates of autism have not gone
up. Instead, a convergence of factors has made it seem more frequent. For one
thing, there are more people on the planet than ever before, which of course
means more autistic people. In addition, various stress factors that exist in
today’s society and formerly did not cause autistic tendencies to manifest
themselves more frequently. Social media alone can be a nightmare for people
with autism. Due to our sensory difficulties, living in a modern, urban
environment often brings out more stress. Due to the fact that the development
of modern urbanity has only happened in the last fifty years, this makes autism
seem much more prevalent. When you add that a lot of the other stimuli provided
by modern technology and way of life, it is easy to see why there appear to be
more autistic people. In reality, the percentages have not changed.<o:p></o:p></i></div>
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<i>Let me explain two
words that everybody on the planet should know and use. Neurotypical is a word
used to describe people without mental variations. Neurodiverese is a word used
to describe people with mental variations. Autism, depression, ADD,
obsessive-compulsive disorder, and Down’s Syndrome can all be seen as forms of
neurodiversity. This concept was conceived by an autistic sociologist in the
1990s as an alternative to thinking of these mental variations as illnesses or
problems. For this reason, I frown upon the term “mental illness”, because the
word “illness” treats the mental conditions at hand as if they are problems.
With proper accommodation and work, they do not have to be problems. I also
frown upon the term “handicapped”. This is because of the origin of the word.
Back in the day, people with disabilities would hold out a cap in their hand
begging for money. Using the term handicapped is demeaning and speaks to a very
negative stereotype. The idea of thinking of disability as a form of diversity,
instead of a problem, is called the social model of disability, as opposed to
the old method of thinking of it as a problem, which is called the medical
model. Once you learn to accept disability as a form of diversity instead of a
problem, much of the stigma goes away.<o:p></o:p></i></div>
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<i>In the interest of
full disclosure, I do use the word “retarded”, but there are a number of
conditions to my use of that word. First of all, I never use it to refer to the
disabled, but rather in its completely different slang meaning which originated
before its use as a diagnostic term. As a slang term, it refers to someone who
does not “get” things, someone stupid, regardless of their mental state or
condition. Therefore, it does not refer to the disabled, but rather to the
stupid. Secondly, I never use the term in a working or political environment,
as the term has no place in business. It should be noted that my use of that
word has gotten me in hot water with the Autistic Self Advocacy Network (ASAN),
who have stated that I do not have the right to use that word, even in my
private time. They terminated my employment with them, but I do not want to
work for them anyway, because I refuse to work for any person or entity that
violates the First Amendment to the Constitution. I have the right to use slang
on my private time, and since my use of the word does not refer to the
disabled, I see any offense that someone takes to the word as perceived by
them, regardless of the actual meaning of my usage of the word, which is not
meant as harmful to the disabled.<o:p></o:p></i></div>
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<b>You’ve posted a
collage on your Facebook describing the way other people see a person with
autism vs how your life really is… When people hear someone is autistic, they
automatically think of someone who is locked inside their own mind, unable to
interact with the world, or they see <st1:place w:st="on"><st1:city w:st="on">Rain</st1:city>
<st1:state w:st="on">Man.</st1:state></st1:place> While I love Dustin Hoffman
as an actor, I suspect that the Hollywood version of Autism is sort of like
going to one of those Americanized Chinese Buffets where everything is served up
to meet people’s expectations of what it they think it should be versus the
authentic version.<o:p></o:p></b></div>
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<i>The upper left image is of a number of my
friends at a creative meeting, at least three of whom I would guess are
autistic. The upper middle image is of a helpless child, embodying how Autism
Speaks sees the autistic population. The upper right image is of a bunch of
protesters—political hell-raisers—which is what the Autistic Self Advocacy
Network (ASAN) wishes to make of us. The middle right image is of a woman being
confronted by an absolutely crazy creature clearly about to disrupt her life by
throwing a pie in her face, which explains how many neurotypical people may
sometimes view the neurodiverse. The middle center image is of a poster for the
film “Rain Man”, which, as you mention, has come to embody the iconic
stereotypical pop culture view of autistic people. The middle right image is of
the cover to the children’s book <u>The Little Engine That Could</u>, which
features the train engine that overcomes tremendous obstacles, representing how
the parents of autistic people often see them. The bottom left image is of me
with a lot of my friends at my birthday party at the <st1:city w:st="on"><st1:place w:st="on">Buffalo</st1:place></st1:city> Zoo, to illustrate how autistic
people actually are with their friends. The bottom center image is of me
hugging my mother and enjoying a tender moment, to illustrate how autistic
people actually are with family. Finally, the bottom right image is of me
giving a keynote address to over a hundred people in <st1:place w:st="on"><st1:city w:st="on">Auburn</st1:city>, <st1:state w:st="on">New York</st1:state></st1:place>,
illustrating how autistic people actually are at work.</i></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<b>I’ve read that
individuals with autism are more likely to have an interaction at some point in
their lives compared to the general public. This is a frightening statistic.
The Justice Department released a comment in July that it is working on a
curriculum to educate local officers about interacting with citizens who have
cognitive disorders. It seems the state of <st1:state w:st="on"><st1:place w:st="on">California</st1:place></st1:state> has become forward thinking in
this aspect as they have begun offering seminars for individuals with autism to
be able to interact with law enforcement officers so both groups have better
understanding. What advice can you offer a parent with a child who is autistic
in preparing their child for a possible interaction with authority figures? We
teach our children to go to the police if they are lost or in danger, but it’s
a confusing situation when those same children must be warned that the officers
who are supposed to be protecting them can cause them potential harm, how does
one find a proper balance where their child is educated but not fearful?<o:p></o:p></b></div>
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<i>The main piece of
advice I would give to an autistic person dealing with authority figures is
something they should excel at. Provide the authority figures with their
diagnosis, and what that entails. That means that if they are having a
stressful moment, they will need to calm down first. Nonetheless, this should
be pretty easy since we can compartmentalize so easily. Autistic people love
dealing in facts and volumes of information. Conveniently, this is something
the law enforcement and other authorities also require to do their jobs.
Failing that, make sure that the autistic child is well-versed in the parts of
the Bill of Rights to the Constitution which protect them from any abuses by
law enforcement. Mind you, the advice that I just gave you is best suited for
autistic children on the higher end of the spectrum, who can talk and interact
with law enforcement. Another good tool for an autistic person to deal with
authorities is a card explaining their situation that can be put in their
wallet, something like the following:<o:p></o:p></i></div>
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<b><i>Card identifying an individual
with autism, SEOPittsburgh, 2010<o:p></o:p></i></b></div>
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<i>In order for a child
to be educated, not fearful, let me speak to the parents of autistic children
for a moment. Parents, if there is one lesson for you, it is to push your kids.
Push them, even if they resist tremendously. Mainstream your kids in education.
Make sure that they know how to use public transit. Try to make sure that they
know how to fly on their own. Help them navigate public spaces. Encourage them
to go out on their own, so that when they reach a certain age, they are doing
things by themselves, instead of always having a parent do everything for them.
I know that most of these lessons are good only for someone on the higher end
of the spectrum, but if you are on the lower end and have an aid, go out with
your aid and try to navigate the world with their help, and not with a parent.
My parents often created incentives for me to go out and do things on my own. I
understand that children are precious, but they should not be coddled. In terms
of dealing with law enforcement, make sure that your child knows their rights,
and that they know to stay calm in any situation involving law enforcement. I
do understand that law enforcement sometimes has very low patience, but it will
reflect positively upon the autistic person in question if they are not the
ones at fault.<o:p></o:p></i></div>
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<b>Many families who
have a member whose diagnosis falls under the category of neuro-diversity, be
it Alzheimer’s, autism, a cognitive functioning difference; worry about that
person wandering off and being harmed or worse. A few years ago, a little boy
in my community wandered off at Christmas. His father had recently passed away,
it was a very stressful and frightening time for the family. The little boy was
never found in time and unfortunately, he succumbed to the frigid weather
conditions. His disappearance inspired a huge grant program funding tracking
devices for individuals at risk of wandering off and not being able to find
their way home. This is a controversial subject, many caregivers see it as a
Godsend, many individuals with disabilities see it as a huge invasion of
privacy. Your thoughts? <o:p></o:p></b></div>
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<i>Whoa boy. This is a
tricky issue. I definitely prefer not to have tracking devices of any kind on
people. The idea is, that if you are a good parent or a good caretaker, these
tracking devices are completely unnecessary. Let me draw a parallel. I know
somebody who got a talking ball from a pet store, and gave it to their autistic
child. They recorded it with their voice, and let their child take it
everywhere, including school. This idea is completely idiotic, because it makes
our children completely dependent on their parents, and uses a ball—I repeat a
ball, you know one of those round things that is supposed to sit there until
you throw it—to do the parents’ job, and do the teacher’s job. The relevant
point is that parents and teachers and caregivers should do their job, instead
of relying upon technology to do it for them. I actually feel rather strongly
about this.<o:p></o:p></i></div>
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<b>And last, but
certainly not least, you’ve recently become the director of your own company,
Autistic Reality. How did that all come about? What made you decide to start
your own business and what types of services do you offer to the public?<o:p></o:p></b></div>
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<b><i>Alec Frazier giving a keynote
address in Auburn, <st1:place w:st="on"><st1:state w:st="on">New York</st1:state></st1:place>
as part of his services with Autistic Reality.<o:p></o:p></i></b></div>
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<i>I have realized that I
have a rather unique philosophy in life. I am more liberal than Autism Speaks,
who view the autistic population as helpless victims, but I am more realistic
than the Autistic Self Advocacy Network (ASAN), who view us as revolutionaries
who must fight like hell, almost to the point of open revolt. I believe that
life is a person with autism should be governed by realistic expectations for
the world around you, and realistic behavior, embracing such customs as slang,
clapping during presentations, and other social behavior. Believe it or not,
ASAN believes that these customs are inappropriate. Most of the people in that
crowd call themselves advocates, but are actually activists. I do find the
difference between them in that advocates work within the system by having
talks, meetings, and trying to cooperate with people, while activists throw
protests, rallies, vigils and tend to sue people before they try to work with
them. Therefore, with this realistic philosophy towards life, I decided to name
my new firm Autistic Reality. It has recently been legally incorporated as a
sole proprietorship consultancy firm.<o:p></o:p></i></div>
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<b><i>The logo for Autistic Reality.
The idea is that reality is being viewed through a lens. I intentionally
avoided puzzles and puzzle pieces, light bulbs, and the color blue. The logo
itself was devised by my friend and mentor, Emil Novak, Sr.<o:p></o:p></i></b></div>
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<i>As for what the firm
does, after a wonderful life of learning how to advocate for myself and others,
I realized that I had services to provide. I discovered that I am a wonderful
public speaker, have a knack for photography, can put on some awesome events,
can do promotional work, but most importantly, that I can advocate on behalf of
myself and others. I have been through the corridors of power advocating for
changes in disability policy. When I was in middle school, I got a state constitutional
amendment passed to raise funding for education. What I consider my legacy up
to this point in my life is the establishment of the Community Living
Administration, a federal agency. Since the late 1960s, the Independent Living
movement has been trying to establish a federal agency to promote their
interests. One day, I and approximately eight other people spoke to a staffer
for Sen. Chuck Schumer, urging him to promote the creation of said agency. What
happened next was completely unexpected. The very next day, he went into the
Senate chambers, and proposed a bill creating that agency. Even more
unexpected, the bill passed and the agency was created. I know that I can enact
change in this world, and the big lesson for everyone else is that they can too!<o:p></o:p></i></div>
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<b>If you’d like more
information on Alec’s Business, Autistic Reality you can find him at <a href="http://www.nothingaboutuswithoutus.net/">http://www.nothingaboutuswithoutus.net/</a><o:p></o:p></b></div>
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<b>You can find Autistic
Reality on Facebook at <a href="https://www.facebook.com/autisticreality">https://www.facebook.com/autisticreality</a><o:p></o:p></b></div>
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<b>You can find Alec’s
book, Without Fear: the First Autistic Superhero, on Facebook at <a href="https://www.facebook.com/withoutfearautism">https://www.facebook.com/withoutfearautism</a><o:p></o:p></b></div>
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<b>I’d like to extend a
huge thank you to my readers for joining us and for posting questions for Alec;
and Alec, I’d like to thank you for taking the time to answer and for being an
integral part of my pre-publication team. Your time is greatly appreciated.<o:p></o:p></b></div>
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<i>Thank you, Denise, for
the questions, and all of the hard work that you do!<o:p></o:p></i></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-43770145180630619042014-09-17T13:48:00.006-07:002014-09-25T22:25:37.940-07:00Part Two- Questions for Alec, an Interview on Living Life with Autism.Hello Everyone,<br />
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Today bring us part two of our question and answer session with Alec Frazier as he shares a bit of advice on education and travel tips for families who have an individual with autism. We also have a surprise guest today, Alec's special travel partner, Millard.</div>
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Take it away Alec.</div>
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<b>I’ve heard that
you’re quite the globe trotter. Do you have a favorite place you’d go to again
and again if you could? Someplace you’ve never been but would love to see? Is
there someplace you’ve visited that would be an ideal travel destination for a
family who has a member that is autistic?<o:p></o:p></b></div>
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<b><i>The <st1:place w:st="on"><st1:placename w:st="on">Haunted</st1:placename> <st1:placetype w:st="on">Mansion</st1:placetype></st1:place>
at Walt Disney World, Alec Frazier’s favorite amusement park attraction ever!<o:p></o:p></i></b></div>
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<i>I would love to go to
Walt Disney World over and over again! I have already been there four times.
They keep on adding new things, and soon they will have a land dedicated to
James Cameron’s Avatar, which I am looking forward to a great deal! I would
love to go back to <st1:city w:st="on">Rome</st1:city>, <st1:city w:st="on">London</st1:city>,
<st1:city w:st="on">Paris</st1:city>, <st1:state w:st="on">Berlin</st1:state>, <st1:city w:st="on">Florence</st1:city>, <st1:city w:st="on"><st1:place w:st="on">Venice</st1:place></st1:city>,
and a number of other places now that I have a proper camera. In terms of
places I have not gone before in my life, I would like to go to <st1:city w:st="on">Vienna</st1:city> and <st1:city w:st="on"><st1:place w:st="on">Prague</st1:place></st1:city>.
There are a number of other places that I would be interested in, such as <st1:state w:st="on">Bavaria</st1:state>, <st1:city w:st="on">St. Petersburg</st1:city>, <st1:country-region w:st="on">Russia</st1:country-region>, and <st1:place w:st="on"><st1:city w:st="on">Moscow</st1:city>, <st1:country-region w:st="on">Russia</st1:country-region></st1:place>.
I am not going to go to <st1:country-region w:st="on"><st1:place w:st="on">Russia</st1:place></st1:country-region>
until they rescind their horrible laws against homosexuality. I would also like
to go to <st1:city w:st="on">Amsterdam</st1:city> and <st1:city w:st="on">The Hague</st1:city>,
as well as <st1:state w:st="on"><st1:place w:st="on">Madrid</st1:place></st1:state>.
When I travel somewhere, I go to take photographs, as well as enjoy the
beautiful architecture. Landscaping is also something I enjoy tremendously. I
also collect capital buildings, and would love to visit more of them!<o:p></o:p></i></div>
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<b><i>Alec Frazier in the center of the
Main Reading Room of the Library of Congress in Washington, DC.</i></b></div>
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<i>For a family with an
autistic individual, I would suggest that they visit a number of the sites in <st1:city w:st="on">Washington</st1:city>, <st1:state w:st="on">DC</st1:state> and <st1:city w:st="on"><st1:place w:st="on">New York City</st1:place></st1:city>, as they
are known for being very accessible to people with disabilities. For example,
the Capitol Building and Library of Congress in Washington, DC are reasonably
quiet compared to many other tourist attractions, and that is easy for someone
with sensory difficulties. Government buildings tend to be very beautiful, as
they are built to showcase the prestige of the populations they represent. I
would also recommend a lot of other beautiful churches, other places of
worship, and government buildings for the same reasons that I recommend
government buildings. These government buildings and places of worship also
have wide open spaces, which is important for people with autism, as we
sometimes feel like our personal space is being encroached upon. It is also
good to visit universities and places on their campuses because people are
often trying to study, and they keep quiet. Overseas, and occasionally in the
US, there are a number of monastic environments such as missions and abbeys
were people have even taken vows of silence, and that is very easy on the ears.<o:p></o:p></i></div>
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<b><i>Alec Frazier with the famous
statue of FDR in his wheelchair at the FDR Memorial. A quote by Eleanor
Roosevelt about her husband’s disability is available at wheelchair height and
in braille behind the statue.<o:p></o:p></i></b></div>
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<i>The Smithsonian
Institution in Washington, DC and the major museums in New York City are
extremely accessible because they are used to large numbers of people, and the
larger the numbers of people, the more people with accessibility needs are
expected to attend. The Smithsonian Institution is free, which is really quite
awesome! I would recommend visiting monuments and memorials everywhere, as
those tend to be quieter environments, and in the <st1:country-region w:st="on"><st1:place w:st="on">United States of America</st1:place></st1:country-region> they also
tend to be pretty accessible. A hallmark of disability design can be found in
the Franklin Delano Roosevelt Memorial in <st1:place w:st="on"><st1:city w:st="on">Washington</st1:city>,
<st1:state w:st="on">DC</st1:state></st1:place>, which features a statue of
the president in a wheelchair, and a message on disability in braille in the
main entrance. It should be noted that the disability community had to fight
like hell for these features to be included. It is also very sensory friendly Memorial,
with a lot of peacefully running water and tactile spaces. It should also be
noted that people with fears of enclosed spaces should stay away from the
interior of the <st1:place w:st="on"><st1:placename w:st="on">Washington</st1:placename>
<st1:placetype w:st="on">Monument</st1:placetype></st1:place> and the dome
climbs on many buildings, as these can be quite cramped. Museum buildings tend
to be some of the more accessible places wherever you go in this country, with
the more public ones like art museums, science museums, and museums run by
national, state, and local governments being among the most accessible. If you
are ever in <st1:place w:st="on"><st1:city w:st="on">Buffalo</st1:city>, <st1:state w:st="on">New York</st1:state></st1:place>, don’t forget to stop by the
world’s only Museum of disABILITY History on <st1:street w:st="on"><st1:address w:st="on">Main Street</st1:address></st1:street>!<o:p></o:p></i></div>
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<b><i>Alec Frazier with lemurs in the
Hagenbeck Zoo in Hamburg, <st1:place w:st="on"><st1:country-region w:st="on">Germany</st1:country-region></st1:place>.<o:p></o:p></i></b></div>
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<i>In Western Europe,
many tourist sites tend to be very accessible, often more so than in the United
States since they have improved on the ADA to a degree that we have not. I very
highly recommend the Hagenbeck Zoo in <st1:place w:st="on"><st1:city w:st="on">Hamburg</st1:city>,
<st1:country-region w:st="on">Germany</st1:country-region></st1:place>. It has
spaces that are very accessible to people with mobility and sensory impairments.
Keep in mind though that a lot of cute, friendly animals are allowed to roam
free in that zoo. There is plenty to cuddle with! In <st1:place w:st="on">Eastern
Europe</st1:place>, however, accessibility still has a lot of catching up to
do. I would also stay away from smaller castles and medieval buildings, because
although the authorities that be try to retrofit those buildings, they are not
always very successful. I have to admit that I have not traveled to Latin
America, Africa, or <st1:place w:st="on">Asia</st1:place>, but it should be
noted that those places have a pretty poor record of accessibility for people
with disabilities.<o:p></o:p></i></div>
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<b>You recently shared
your experiences using various modes of transportation during your trip to <st1:state w:st="on"><st1:place w:st="on">California</st1:place></st1:state>, it sounds
like you had a very enjoyable trip and navigated the transportation system
well. Do you have any pointers for readers who are autistic or who might be
traveling with an autistic child? Perhaps you have ideas to help lessen the
sensory overload of navigating a crowded airport or being stuck on a long
flight?<o:p></o:p></b></div>
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<i>The key for all
autistic people who wish to deal better with hectic public situations is to
compartmentalize. You should view yourself as one unit, and the world around
yourself as another unit. Then, and this can be kind of tricky, pick and choose
the appropriate times and methods to deal with the world around yourself. Of
course, this leads to temptation to shut yourself off completely from the
world. Never do this! Be a part of the world, but establish healthy boundaries.
This is the mental part of my tip. As for physical stimuli, I have noticed a
number of autistic people using sound canceling headphones, and that might be a
good idea. If someone takes issue with it, tell them that it is a disability
accommodation. When traveling on an airplane, it is often very tempting to take
the window seat. This actually squeezes you in with very limited means to
maneuver. Take the aisle seat! That way, you have the most possible room during
the majority of the flight, except when the flight attendants are serving.
Bringing a book along is also a wonderful idea, but cassette tapes or something
else to listen to will do just as well. For family members of autistic children
and adults, please keep in mind that you have to be patient.<o:p></o:p></i></div>
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<i>I will not lie. Once,
airport police was called on me because I was overwhelmed. This was when I was
already an adult, so I calmly told them that I was autistic and having sensory
overload. They told me that they understood, and were just concerned about my
safety. In the case of a child, it would be very useful to have a calm,
collected guardian who can tell authorities the same thing. Also, airports
often provide staff members to guide underaged minors through the process.
Having one of these staff members accompany an autistic minor is a wonderful
idea. Many autistic people, although not all, will eventually be able to
navigate airports on their own.<o:p></o:p></i></div>
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<b>And on the fun side
of travel, because travel should be enjoyable… You don’t travel alone, your
friend Millard has gone on a number of adventures with you. It appears this
might be a family tradition. You’re not the only member of your family who
travels with a companion are you? Scotch Tapir is quite the globetrotter as
well. Could you tell us a little bit about this tradition? How did it start and
who initiated it? I’ve got to admit, I’ve got a travel companion of my own.
There are a number of pictures someplace on the internet that feature myself,
my daughter Patti, our friend Debbie Powell and a sharp dressed guy with shades
by the name of Pocket Edward. Good times, in <st1:city w:st="on"><st1:place w:st="on">Chicago</st1:place></st1:city>… <st1:state w:st="on"><st1:place w:st="on">Maine</st1:place></st1:state>… <o:p></o:p></b></div>
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<b><i>Millard the <st1:city w:st="on">Buffalo</st1:city>
at the Paulskirche in <st1:place w:st="on"><st1:city w:st="on">Frankfurt-am-Main</st1:city>,
<st1:country-region w:st="on">Germany</st1:country-region></st1:place>, where
that country’s first democratic Parliament took place in 1848.</i></b></div>
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<i>Ha! Yes, I bought
Millard the <st1:city w:st="on">Buffalo</st1:city> at the gift shop in the
student center of my university, the <st1:placetype w:st="on">State</st1:placetype>
<st1:placetype w:st="on">University</st1:placetype> of <st1:state w:st="on">New
York</st1:state> at <st1:city w:st="on"><st1:place w:st="on">Buffalo</st1:place></st1:city>.
He has since gone a number of places, some mundane, and some very interesting.
In the <st1:country-region w:st="on">United States</st1:country-region>, he has
gone around <st1:city w:st="on">Buffalo</st1:city>, <st1:city w:st="on">Ithaca</st1:city>,
Southern California, <st1:city w:st="on">New York City</st1:city>, and <st1:state w:st="on"><st1:place w:st="on">Colorado</st1:place></st1:state>. In Europe, he
has gone around <st1:country-region w:st="on">Germany</st1:country-region>
including <st1:city w:st="on">Frankfurt</st1:city>, <st1:state w:st="on">Hamburg</st1:state>,
<st1:city w:st="on"><st1:place w:st="on">Cologne</st1:place></st1:city>, and
Stade. Some of the more exciting places he has been include Griffith Park
Observatory, the San Diego Zoo, the Morgan Library and Museum, the Römer (seat
of the Holy Roman Empire for at least 600 years), and the tomb of the three
Magi in Cologne Cathedral. Some of the more intriguing places he has been
include on top of a lily pad in the Denver Botanic Gardens, on a scale in a gas
station in Batavia, New York, on an original staircase from the long since
demolished Penn Station in New York City, on the praying hands of Father
Junipero Sera at the Mission in San Diego, and even with an eight foot tall
flower! Of course, I cannot begin to explain all of the crazy situations he has
found himself in! I intend on taking him to every new land where I travel, and
take photos of him with many of the
sites!<o:p></o:p></i></div>
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<b><i>Scotch Tapir with the famous
reclining Buddha of Wat Pho in Bangkok, <st1:place w:st="on"><st1:country-region w:st="on">Thailand</st1:country-region></st1:place>.</i></b></div>
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<i>When my father was a
child, he had a little stuffed dog named Pinky. Through a series of unfortunate
events, that dog was lost a few years ago. I offered to buy him a new stuffed
friend. When we went to the gift shop at the <st1:city w:st="on"><st1:place w:st="on">Denver</st1:place></st1:city> Zoo, we selected a small stuffed
tapir. I named her Scotch is a joke. You get it? Scotch Tapir? The idea was
that he would have something small, yet cuddly when he travels. He took it to
the extreme, taking Scotch all over the world, especially <st1:place w:st="on">Southeast
Asia</st1:place>, and taking photos of her everywhere! Buddhist temples! On
elephantback! At fortresses! Even on a lily pad—you can see where I got that
idea! So when I bought Millard, I decided that he embodied something unique
about me. Buffaloes are rugged and tough, yet often playful. I named him after
one of the founders of my university, Millard Fillmore. While he was the first
Chancellor of my university, Fillmore also held a very important job out of
town. He was president of the <st1:country-region w:st="on"><st1:place w:st="on">United
States</st1:place></st1:country-region>! My dad’s girlfriend also has a
stuffed rabbit named Wasz, which is short for Wazskawy Wabbit. Wasz’s trips
have been significantly more limited.<o:p></o:p></i></div>
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<b><i>Lucy the Wombat<o:p></o:p></i></b></div>
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<i>It should be noted
that everyone in my immediate family has a totem animal which they best embody
and is best embodies them. I am playful, curious, and cuddly, so I am a wombat.
My father is happy, loving, and also very playful, so he is a yellow lab. My
brother has odd habits, is very rambunctious, and, you guessed it, playful, so
he is an otter. My mother is multitalented, also loves to cuddle, and of
course, playful, so she is a cuttlefish. Each of us has a stuffed animal
version of our totem animal. My wombat is named Lucy, my mother’s cuttlefish is
named Magic Fingers, I’m not sure what my brother named his otter, or if he
still has it even (he lives a very wild life), and my father’s yellow lab is
named Joyful. I have also given fellow fan fiction writer Betti Gefecht a
lemur, which she has named <st1:city w:st="on"><st1:place w:st="on">Fulton</st1:place></st1:city>,
and which plays with her cat quite regularly! My home is also called The
Wombatorium, and has its own Facebook page!<o:p></o:p></i></div>
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<b>I see you as a very
strong, self-directed young man who has embraced life. It sounds like you had a
unique experience growing up. In a day when many kids who learned differently
were segregated into “special” classrooms, your parents refused to do that. Can
you tell my readers how that impacted your learning experience? Children can be
cruel. Someone in my life was diagnosed at a very early age with a learning
disability. Prior to being identified as a person with a disability this person
was a social butterfly, being moved to a non-inclusive classroom created a
stigma that lasted through out school and with that, socialization took a huge
nosedive. How did being mainstreamed impact your social interactions? Do you
feel your fellow students treated you like everyone else in a mainstreamed
environment?<o:p></o:p></b></div>
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<b><i>Julie Kearney, Alec Frazier’s
Special Education teacher and caseworker during his senior year in high school
with Alec Frazier when they were reunited during his ten year high school
reunion.<o:p></o:p></i></b></div>
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<i>In the short run, my
learning experience in the mainstream population was both positive and
negative. In the long run, it has been completely positive. As for the
positives, I got to experience how everybody interacts with one another, I got
to eventually make friends with other students, I got to experience the same
learning and class lessons that everyone else did, and although at I frequently
did not feel like everyone else, I was definitely treated like everyone else.
In addition to that, I had caseworkers in the Special Education department who
were very devoted in making sure that my cause was advanced throughout the
school. My parents were, as you said, instrumental in making sure that I was
treated with the respect that every human being deserves. They went above and
beyond the call of duty, and made sure that by the time I was eighteen, I was
ready to live on my own and support myself with a bank account, traveling on my
own, an apartment, and control over my own finances.<o:p></o:p></i></div>
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<i>Students did not
always treat me as an equal. There was frequent bullying in public school,
although the worst bullying came in community college. There is a piece of
advice that people tell you which seems like a cliché, but it is very useful.
You are better than the bullies. You are always better than the bullies! Gay
rights advocate Dan Savage started a whole campaign telling people one simple
message: It Gets Better. That is true, not just for the gay population, but for
the disabled population as well. As a child, I was often frightened and did not
get along well with others. Now, I am an empowered disability rights advocate
who has gotten a standing ovation from JFK’s sister, passed two pieces of
legislation, established his own advocacy firm, and even better, I have tons
and tons of friends! It should be noted that my friends are almost all people
without disabilities. After all, most of the human population does not have
disabilities, so the same is true for my friends. No matter how much the
bullying or pressure hurts, never give up. You will have a wonderful future!<o:p></o:p></i></div>
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<b>Mary is having issues
advocating for her daughter’s educational needs and asks<span style="background: #F6F7F8;"> how to overcome when a school fights you for giving a student what
she needs? The IEP is a very important tool in a child’s educational plan. Can
you provide other tips that might help Mary advocate for what her daughter
needs?</span><o:p></o:p></b></div>
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<b><i>Western New York Independent
Living (WNYIL) in <st1:place w:st="on"><st1:city w:st="on">Buffalo</st1:city>, <st1:state w:st="on">New York</st1:state></st1:place><o:p></o:p></i></b></div>
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<b><i><st1:place w:st="on"><st1:state w:st="on"><br /></st1:state></st1:place></i></b></div>
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<i>The IEP is indeed very
important! In fact, mine is still important in college. When my university was
looking for proper accommodations to give me, they asked me for my IEP as a
basis upon which to formulate accommodations. In addition to going to school,
doing my independent advocacy work, and hanging out with friends, I also
volunteer at the local <st1:place w:st="on"><st1:placename w:st="on">Independent</st1:placename>
<st1:placename w:st="on">Living</st1:placename> <st1:placetype w:st="on">Center</st1:placetype></st1:place>.
The Rehabilitation Act of 1973 specifies that Centers for Independent Living,
or CILs as they are also called, shall serve to benefit the disabled population
all over the <st1:country-region w:st="on"><st1:place w:st="on">United States</st1:place></st1:country-region>.
Mary’s independent living center should probably have an educational advocate, or
at least caseworkers who can help her. I know this because the center where I
work has an educational advocate, but it also has a number of caseworkers
assigned to individuals. However, CILs are only obligated to serve people as
far as is mandated by law, and although some of them serve people beyond the
requirements of the law, that is up to their discretion. If Mary is having an
issue with not getting adequate services from her local CIL, there is always a
grievance process to follow at that center. I hope that this advice helps a
little bit.<o:p></o:p></i></div>
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<b>Socialization is
important for anyone, but even more so for someone who is autistic. It appears,
if one were judging by your social networking sites, that you’re a very social
person, yet you’ve stated that you’ve only really had a few close friends, and
that occurred fairly recently. Would you share with us how you achieved and
continue to work to maintain your social life? <o:p></o:p></b></div>
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<b><i>Alec Frazier with some of his
friends at the Buffalo Zoo, including from left to right: Amanda Gollhardt,
Britt Cherry, Sebastiano Spurio, Megan Krug, Marcus Cherry, and Todd Vaarwerk. </i></b></div>
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<b><i>Alec has come up with a perfect description for this photo:<o:p></o:p></i></b></div>
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<b>When I look at this photo I see people. White people, black people, fuzzy people, smooth people, gay people, straight people, men people, women people, neurotypical people, neurodiverse people, standing people, wheeled people. I see humanity. I see my friends!</b></div>
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<i>Until relatively
recently in my life, I did not have much of a social life. I did go to common
interest groups such as comic book clubs in order to socialize with people. The
massive wealth of friends I have right now started with four people. I first
met them at a comic book club, Visions Comic Art Group in <st1:place w:st="on"><st1:city w:st="on">Buffalo</st1:city>, <st1:state w:st="on">New York</st1:state></st1:place>.
By now, we’re so close that we are like siblings. Sebastiano is quirky like me,
but in a different fashion. He is a genius and I love him like a brother. Megan
gets business done, and is very supportive. Amanda is cute and fun-loving.
Marcus is always happy and great with technology. These friends are, by now,
also my family. The key was making these friends. I met them through a common
interest group, as mentioned, and the next step was to actually ask them if I
could hang out with them. For myself and other autistic individuals, that takes
a great deal of courage. Draw from within yourself, and find that courage to
ask people if you can spend time with them. You’ll be glad you did!<o:p></o:p></i></div>
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<b>I spend a lot of time
sharing information on disability etiquette. In my head, these things should be
common sense, but not everyone realizes that what they are saying or doing is
condescending or negative. One of those things is the “Isn’t he Inspiring”
mindset people have when viewing an individual with a disability. While the
knee jerk reaction to someone with a disability doing something the general
public might see as monumental based on their perception of the person, that
kind of reaction can be hurtful to the person with a disability. Can you tell
my readers why it’s important for you to just be seen as “Alec” and not as an
inspirational super-hero who makes huge accomplishments, despite his
limitations? <o:p></o:p></b></div>
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<i>I have a relatively
simple answer for that. Ironically, it is that I am not “just Alec”. Everybody
on the planet, myself included, is three things. We are all human. We share the
wonderful, awesome experience of living in this existence. That is our primary
identity. Secondly, we are all ourselves. We are all unique individuals who,
although all human, have wonderful individual characteristics. Tertiary to any
of that is any other identity, such as being gay, or disabled, or black, or
Roman Catholic, or basically anything else. Remember this: We are human first,
ourselves second, and any other identity is incidental to that.<o:p></o:p></i></div>
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<b>This concludes our second installment of my guest interview with Alec. Please join us September 24, when </b><b>Alec shares information on assistive technology, breaking barriers, neurodiversity and the business he has established where he utilizes his many talents and achievements to assist others.</b></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-40315304531942623912014-09-12T09:23:00.001-07:002014-09-12T10:16:16.263-07:00High White Count, the chronicle of one family's longest day.<center style="text-align: justify;">
September is an awareness month for so many things... some of them I've recently shared, Thyroid Cancer Awareness, Suicide Prevention, and Spinal Cord Injury, the latter something I talk about constantly not only because it's a subject I write about, but because it's been a huge part of my life long career. </center>
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Today, though, I want to help raise awareness for another cause, one that is progressing by leaps and bounds in the area of research because of the generous contributions that have been made. Just a few years ago, a diagnosis of leukemia was a death sentence, but thanks to research, many blood cancer stories are ones of success- stories of triumph, of survival.</center>
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Yesterday, in recognition of Blood Cancer Awareness Month, my friend, Born shared a story about Blood Cancer and how it's personally touched her family.</center>
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<i><b>High White Count</b></i>, a collaborative effort, written by Born and her son chronicles the longest day of their lives. (She refers to it as the longest day of <i>his</i> life, but if you're a mom, you know the drill- stuff like this is never a solo act.) </center>
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I've spent so many of my own hours in the hospital ER with my mother, waiting for a room and for labs to come back; trying, but failing, to shut out the overwhelming sensory stimulation of sick and injured people, acrid odors (ER coffee included), being disappointed by the lack of proper food, (I'm diabetic- you'd think a hospital would have a vending machine with healthy snacks- a pack of peanuts or sunflower seeds would suffice, crackers would be nice- encountering beef jerky once was like discovering a hidden treasure.) Being shuffled around by the hustle and bustle of workers coming in and out but never having answers... Born's story played out like a film reel being projected in my mind, and down in the corner I imagined a digital clock like the one in the television show, <i>Twenty Four</i> as each second passed by. </center>
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Born is an author, a silly, wonderful storyteller who always makes her readers smile, so this piece was different, this mother wearing her heart on her sleeve. I've interacted with Born, superficially over the course of a few years. I don't know her nearly as well as her other 1500+ Facebook followers probably do, but I sensed something was different this summer, in the tone of her posts, the reactions from her friends and now I understand why.</center>
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Born's story resonated with me on a personal level, as well; because of a blood disorder, I've spent a huge amount of my summer in the hematology/oncology department of my own hospital, being poked and prodded; offering up enough vials of blood for testing that they load them into a bowl before we start. </center>
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No, I don't have a blood cancer, but two of my grandparents did, as did my grandmother's sister. For all three of them, the diagnosis <i>was</i> a very short death sentence, leaving my mother orphaned before she was three, and leaving my dad to support his mother and siblings at the age of sixteen, so I can appreciate how important it is for research to move forward.</center>
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Yes, this piece was written to support the cause of raising not only awareness, but funds for research into the many forms of blood cancer, as well. Born and her family are not only sharing their story, they're taking it one step further; for each donation that is made to the Leukemia and Lymphoma Society, Born's family will make a matching contribution. more information can be found at the end of <i><b>High White Count</b>.</i></center>
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If you're unable to donate financially, there are so many non-monetary ways you can help make a difference as well; volunteer for a bake sale or a car wash in your own community, share this story, share your own if you have one. Every effort counts, no matter how great or how small. Thank you.</center>
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I'll leave you now with Born and her son, as they share their story. </center>
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<a href="https://dl.dropboxusercontent.com/u/16388712/High%20White%20Count%20public%20dropbox.pdf" target="_blank">Their longest day</a>.</center>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-75923948500786809102014-09-10T11:37:00.000-07:002014-09-17T13:50:30.971-07:00Questions for Alec, an Interview on Living Life with Autism.<div class="MsoNormal">
<b>Hello Everyone.<o:p></o:p></b></div>
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<b>It’s my pleasure to
introduce my friend, Alec Frazier. Hello Alec, thanks for taking the time out
of your schedule to sit down with us today.<o:p></o:p></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFruZ7y0SunAs2h0mQNjE2kpBvxGcx-F5kEGV4ykttMhkuoeX4bP1fVU686TaP-sRreKoQWruybm-hSHj8ox3TE__E5x9ay24atyvxkBratGwgAsRKySmlSx0PhS_thFHd1FQ_5R9A30xA/s1600/IMG_1419.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjFruZ7y0SunAs2h0mQNjE2kpBvxGcx-F5kEGV4ykttMhkuoeX4bP1fVU686TaP-sRreKoQWruybm-hSHj8ox3TE__E5x9ay24atyvxkBratGwgAsRKySmlSx0PhS_thFHd1FQ_5R9A30xA/s1600/IMG_1419.JPG" height="300" width="400" /></a></div>
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<b><i>Alec Frazier</i></b><i><o:p></o:p></i></div>
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<b><i><br /></i></b></div>
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<i>Hello everyone! It’s
great to speak with you! Thank you, Denise, for interviewing me!<o:p></o:p></i></div>
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<b>As I mentioned on my
Facebook post, Alec is autistic and has a number of other diagnoses as well. My
career experiences have exposed me to a wealth of disability related
information, but I’ll be the first to admit that my experience with conditions
on the autism spectrum is very limited. I had questions for Alec and thought
you might too, and he’s graciously agreed to answer them.<o:p></o:p></b></div>
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<i>I have the following
diagnoses, which shape my life a great deal:<o:p></o:p></i></div>
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<i>Hereditary Hemorrhagic
Telangiectasia (HHT)<o:p></o:p></i></div>
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<i>This is a disorder of
the blood vessels, which gives me higher risk of stroke, nosebleed, hemorrhage,
and other related difficulties. It also means that I am more susceptible to
infection. HHT used to be called Osler Weber Rendu Syndrome. It is usually
hereditary, through the female line in the family, and my mother has it as does
her aunt. I found out that I had it after I got a stroke. I was rushed to the
hospital, where they caught it on time, and have since altered my life
accordingly. It was found that I had three lesions in my brain, and one in my
lung. I have had brain surgery to glue one of the lesions that this is left on
my brain. This actually took only about an hour, in which the doctors inserted
a catheter into my groin, sending it up through a blood vessel and into my
brain. I actually felt the catheter moving in my brain and asked them if that
was what it was. They said, “Yes, now shut up!” I know that I will need
additional surgeries to correct the other lesions. For the remaining lesions in
my brain, they will not risk gluing again. Instead, they will use gamma
radiation.<o:p></o:p></i></div>
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<i>Hip Dysplasia<o:p></o:p></i></div>
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<i>I was born in a breach
birth, with my bottom coming out first in my head last. This caused, or at
least contributed to my having Hip Dysplasia. What this meant for me is that
the pelvic material was there, but the ball and socket joint was not formed.
Prior to my birth, this would have meant youth in a wheelchair with later life
being spent with successive artificial hip transplants. However, in the month
prior to my birth, two Japanese babies had successfully had a new procedure
done. Others were not so lucky, and died. I was the first person in <st1:place w:st="on">North America</st1:place> to have the procedure done successfully.
The new procedure entailed having several operations and other procedures done
to electrostatically stimulate bone growth into forming the ball and socket
joints. I then spent a year in a full body cast, and another year in traction.
It is safe to say, that if I were born any earlier or at a different hospital I
would not have the ability to walk today.<o:p></o:p></i></div>
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<i>Sensory Processing
Disorder (SPD)<o:p></o:p></i></div>
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<i>Formerly known as
Sensory Integration Dysfunction, many people have it, especially people on the
autism spectrum, but few know that it has a name. Sensory Processing Disorder
entails having higher than average awareness of input from one’s senses. Sounds
are louder. Smells are stronger. Tastes are more acute. Textures are more
noticeable. Visuals are more detailed. People with Sensory Processing Disorder
are often also much more susceptible to sudden sensory input. This can make
life distracting to say the least, and very difficult in extreme cases. To me,
this means that extremely large crowds can be troublesome. Although I am able
to sit in large classes of almost 500 people, if those people were partying and
making a lot of noise it would be difficult. Flickering fluorescent lights are
a problem for me, as is sudden touching. Make no mistake though, I love to give
and receive hugs!<o:p></o:p></i></div>
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<i>Attention Deficit
Disorder (ADD)<o:p></o:p></i></div>
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<i>People with ADD are
very easily distracted, with our attentions drawn elsewhere. Sudden occurrences
or interesting objects can easily distract us from previous involvements. One
ramification this has for me is that reading is extremely difficult, since I am
so easily distracted. As a result, I get my school books in digital format, so
they can be read to me while I am also doing a secondary task to occupy my
mind. There are many teachers and professors will tell you that a student who
is doing work on a computer in class is easily distracted from their lecture.
Because of my ADD, being on a computer in class actually helps me to pay
attention by focusing my loose attentions elsewhere.<o:p></o:p></i></div>
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<i>Dysgraphia and Digital
Atonia<o:p></o:p></i></div>
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<i>Dysgraphia is to
writing as dyslexia is to reading. Whereas dyslexia is a disorder hampering
understanding of the ordering of letters and words, dysgraphia is a disorder
hampering the proper placement of letters and words while writing. Many people
believe improper placement when writing is a symptom of dyslexia, when in fact
it is dysgraphia. This is because dysgraphia is not nearly as well-known as
dyslexia. Digital Atonia is a lack of muscle development in the hands leading
to poor eye-brain-hand coordination. To counter my dysgraphia and digital
atonia, I dictate papers on Dragon NaturallySpeaking software provided by the
Nuance Corporation. I am able to train it to recognize my voice, and I am able
to speak to it naturally, while it transcribes my speech on various programs
such as Microsoft Word or Facebook.<o:p></o:p></i></div>
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<i>Bipolar Disorder<o:p></o:p></i></div>
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<i>Bipolar disorder used
to be called manic depression. It is not called that anymore, but unfortunately
many people do not recognize this fact. Bipolar disorder entails having periods
of high, happy feelings, and periods of low, unhappy feelings. People have a
right not to take medication, and I am against radical amounts of medication.
But for me, moderate amounts of medication have helped with a number of my
diagnoses, including the high-low swings of bipolar disorder.<o:p></o:p></i></div>
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<i>Obsessive-Compulsive
Disorder (OCD)<o:p></o:p></i></div>
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<i>Obsessive-Compulsive
Disorder or OCD is about exactly that: obsessions with particular topics and
compulsions to do specific things. There is a misconception that OCD is almost
completely about the compulsion part. This is not true. For me, my obsessions
involve focusing in detail on various topics, such as architecture, government,
photography, and Star Trek. You’ll notice that these obsessions are also
hobbies. In my world, if I am going to have obsessions, then they might as well
be fun! For me, compulsions have been about such things as straightening out
the cricks in my neck and doing things favoring the right side of my body.<o:p></o:p></i></div>
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<i>Asperger’s Syndrome<o:p></o:p></i></div>
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<i>Asperger’s Syndrome,
which is a form of Autism, is not a disorder but a form of neurodiversity. Neurodiversity
is a recognized form of diversity, entailing diversity of the forms of the
mind. It is as natural as diversity of skin color and sexual orientation. It is
also inherent as is gender and religious affiliation. Asperger’s Syndrome is a
form of autism which is no longer officially recognized by the diagnostic
index, but it should be. Instead, all formerly recognized forms of autism are
lumped together under the title Autism Spectrum Disorder (ASD). In reality,
there are vast differences between various types of autism. Asperger’s Syndrome
has traditionally been called a high functioning form of autism. Those of us in
the autistic rights movements are trying to reject the terms high and low
functioning as those terms have their origins in the institutional setting
where they were used to discriminate against various types of patients. Instead
of using the terms high and low functioning, people should just describe the
person in question. Like people with all forms of autism, people with
Asperger’s Syndrome, I have a tough time interacting socially, and can have
mood swings and a degree of emotional variation from time to time. Over the 28
years of my life, I had become to a large degree able to socialize with other
people in a structured setting. Therefore I have a tendency to find friends in
clubs and organizations of like-minded people. Interpersonal relationships
between myself and other individuals tend to be more difficult. I do get pretty
emotional at times, but I do my best to keep this in check on a social level.<o:p></o:p></i></div>
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<b>I made Alec’s
acquaintance through a common bond. We were both readers of “Little Green and
Easy Bella,” a Twilight Fanfiction story written by our mutual friend, Betti
Gefecht.<o:p></o:p></b></div>
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<b>I adore “Little
Green,” he’s an endearing character with multiple layers, one of those layers
being autism. When I read the story I felt like I was seeing the world through
his eyes, the story is a sensory experience for me that I don’t often discover
reading fiction. I can’t describe it other than to say it is just so much more…<o:p></o:p></b></div>
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<b>Alec, what drew you
to Little Green? <o:p></o:p></b></div>
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<i>I was drawn to Little
Green for a number of reasons. Betti lives in <st1:country-region w:st="on"><st1:place w:st="on">Germany</st1:place></st1:country-region>, a nation that I adore in
part because my mother is from that land. I also enjoy that country because of
its liberal political, economic, and social tradition, as well as all of the
wonderful culture and history in that nation. Betti is also very creative,
quite artistically inclined, and very loving. She is also very crazy, in a good
way! After all, you have to be crazy to live on this planet! When I started
reading her fiction, Betti said that she had never met a person with autism,
but had heard a great deal about it. This is interesting, because I am sure
that a majority of the Western human population would say this. It is doubly
interesting because I am sure that a majority of the Western human population
has actually met and is even friends with an autistic person. Those of us on
the higher end of the spectrum tend to slip by is just odd or quirky.<o:p></o:p></i></div>
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<i>I then proceeded to
befriend Betti, and tell her a little bit about what it is like living with
autism. She was very eager and willing to learn! Many autistic activists
believe that only a person with autism should be able to write about a person
with autism. I think that that is just silly! Many men write about women! Many
African-Americans write about white people! In fact, the best of writers prove
their mettle by writing very well about people whom they have nothing in common
with. I do believe that autistic writers should be more prevalent, but I also
do not believe that autistic writers who write poorly should be coddled.<o:p></o:p></i></div>
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<b><i><br /></i></b></div>
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<b><i>Betti Gefecht with Alec Frazier
in <st1:place w:st="on"><st1:city w:st="on">Stade</st1:city>, <st1:country-region w:st="on">Germany</st1:country-region></st1:place>.<o:p></o:p></i></b></div>
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<b><i><br /></i></b></div>
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<i>I went to visit Betti
at her wonderful home in</i> <i>Bützfleth,
outside of Stade, in the Lower Saxon <st1:place w:st="on"><st1:placetype w:st="on">land</st1:placetype>
of <st1:placename w:st="on">Germany</st1:placename></st1:place>. Her home has
been built by her husband, Liber Freeman, and she has designed much of the
decoration. It even has a giant sign outside saying that it is her house! Betti
used to be a quite popular musician, and has also made paintings, dolls, and
other artwork. Freeman currently produces music and makes the most beautiful
guitars on the planet. I spent fifteen minutes with him, and my autdar (like
gaydar, but for autistic people) was going crazy. I do believe that he is
autistic, and that that is part of why he is such a multi-talented creator! So
although Betti had claimed that she had never met somebody with autism, it
turns out that she has actually been living most of her life in a very loving
relationship with an autistic genius. The two of them have an absolutely
wonderful world together! Everybody should be as lucky in life as they have
been! I have since adopted them as my Aunt and Uncle.<o:p></o:p></i></div>
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<b>The Edwards in the
Fanfiction fandom come in many incarnations. While Betti’s Edward is autistic,
mine has a spinal cord injury. Do you have a favorite “fic” that features a
Twi-character whose circumstances help bring awareness to others about a
specific issue?<o:p></o:p></b></div>
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<br /></div>
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<i>I am certainly a
proponent of the way that Little Green and Easybella promotes autism awareness.
Your own fiction was phenomenal in its promotion of people with various
disabilities. I am also a fan of various fictions promoting successful
character development for people who have formerly been bullied. I like high
school reunion fictions, and fictions where someone has come back from a long
time living somewhere else after redefining themselves. I was bullied quite a
bit as a kid, and have now made quite a name for myself in my field. Seeing
fictions where people are able to prove successfully that they have gone
somewhere in life is a true wonder to behold. I myself have accomplished just
that; I recently went to my high school’s ten year reunion, and many people
told me that they were thoroughly impressed with how far I have gotten since
then! I also like slash fiction, since I am gay and like reading about positive
gay role models. So in short, my favorite fiction that helps bring awareness to
something is Betti’s Little Green and Easybella.<o:p></o:p></i></div>
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<br /></div>
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<b>You recently endorsed
Amber Johnson’s book, Puddle Jumping which was recently released, as you’re doing
with my story, Impact. What does that endorsement mean for potential readers? <o:p></o:p></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW6SFOpZ99tJqTHpB0SrgNcRU-5FmWGi7l7YU9xS2HuEbLn61l1j3zhJwUArs-NWsd8OiOgnI_lIKY_VAiS3bgDE4Xwgi_NT-m0K7MSWs34B6cSSzQV63YIDYe6_niZMabCFabXTRVSYYb/s1600/PJ+full+cover+example+paint+splats+spine.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjW6SFOpZ99tJqTHpB0SrgNcRU-5FmWGi7l7YU9xS2HuEbLn61l1j3zhJwUArs-NWsd8OiOgnI_lIKY_VAiS3bgDE4Xwgi_NT-m0K7MSWs34B6cSSzQV63YIDYe6_niZMabCFabXTRVSYYb/s1600/PJ+full+cover+example+paint+splats+spine.png" height="292" width="400" /></a></div>
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<br /></div>
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<b><i>The back and front covers of Amber L. Johnson's <u>Puddle
Jumping</u>, with Alec Frazier’s endorsement on the back cover along with his website. Amber L. Johnson, 2014. </i></b></div>
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<b><i><br /></i></b></div>
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<i>My endorsement of
Puddle Jumping should be read as twofold. First of all, it is a reaffirmation
on the part of an autistic advocate and self-advocate that the book in question
is indeed representative of the real life and world of an autistic person.
Please bear in mind that a number of more radical people in the autistic
activism world had attacked Amber Johnson for her portrayal of <st1:city w:st="on"><st1:place w:st="on">Colton</st1:place></st1:city> Neely as an autistic individual. They
claimed that they were not like <st1:city w:st="on"><st1:place w:st="on">Colton</st1:place></st1:city>,
and therefore the story was hogwash. I disagree, and would like to cite the
fact that autism is a spectrum disorder with a great variety of people in it.
One of those people could very well be <st1:city w:st="on"><st1:place w:st="on">Colton</st1:place></st1:city>
Neely.<o:p></o:p></i></div>
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<br /></div>
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<i>The second factor in
my endorsement, which plays a part in any endorsement that I make, is the fact
that I am someone with disabilities representing the disabled population, and
the advocacy movement of that population, giving my full-hearted approval to a
book that deserves notice. I do not claim to speak for the whole disabled
population, or even the whole autistic population. I do, however, claim to
speak as a person with a disability, which happens to be autism who appreciates
the said book, and its endeavors to represent those populations. The
endorsement says that I would recommend it to others with an interest in
disability, autism, advocacy, and a realistic portrayal of those things. I
cannot make the entire disabled or autistic population appreciate something,
because that is up to the individuals themselves. Nonetheless, I can encourage
it. That is what Amber or anyone gets out of my endorsement. What I get out of
the endorsement is increased name recognition for my firm, Autistic Reality, as
well as a recognition that these endeavors are the kinds of things I look
favorably upon.<o:p></o:p></i></div>
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<br /></div>
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<b>You’ve done some
writing of your own. Would you mind telling my readers about your literary
review and why this is a project so close to your heart?<o:p></o:p></b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_ciF9IrZpRUqB40Xd7h3_kkP70MnOA-U0gb72cVwL1hOWDe2w77uMjBCqD8oTBzIxWQbHex6zAW7T-QgRdOSg6b8tpV1XvupbPyFM4o1nwHoSJYjLeaxgCFgjTIxhtRYRgdSAxUFKhsQq/s1600/IMG_3858.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_ciF9IrZpRUqB40Xd7h3_kkP70MnOA-U0gb72cVwL1hOWDe2w77uMjBCqD8oTBzIxWQbHex6zAW7T-QgRdOSg6b8tpV1XvupbPyFM4o1nwHoSJYjLeaxgCFgjTIxhtRYRgdSAxUFKhsQq/s1600/IMG_3858.JPG" height="300" width="400" /></a></div>
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<o:p><br /></o:p></div>
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<b><i>Copies of the first edition of
Without Fear: The First Autistic Superhero on sale at the world’s only Museum
of disABILITY History in <st1:place w:st="on"><st1:city w:st="on">Buffalo</st1:city>,
<st1:state w:st="on">New York</st1:state></st1:place>.</i></b></div>
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<b><i><br /></i></b></div>
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<i>My literary review
profiles the first positively, realistically portrayed autistic superhero, Tim
Urich as the Daredevil of the future as written by Brian Michael Bendis for
Marvel Comics. Urich’s appearances take place in two comic book story arcs,
Daredevil: Wake Up, and Daredevil: End of Days. I have done the literary review
from a disability studies point of view. It has been for sale at a number of
comic book conventions and conferences, including Ithacon in <st1:city w:st="on">Ithaca</st1:city>,
<st1:state w:st="on">New York</st1:state>, Cripping the Comicon in <st1:city w:st="on">Syracuse</st1:city>, <st1:state w:st="on">New York</st1:state>, and
Free Comic Book Day in <st1:place w:st="on"><st1:city w:st="on">Buffalo</st1:city>,
<st1:state w:st="on">New York</st1:state></st1:place>. I have also given
copies to some of my favorite comic book creators, including the legendary
writer Roger Stern, and prolific animator Warren Greenwood. I will be giving a
copy to the legendary Stan Lee next year. The book is so important to me
because it profiles a perfect example of my philosophy of Autistic Reality. The
character in the books is shown as living his life with autism, not living an
autistic life. A key philosophical point of view of Autistic Reality is that
autism should not have to define the individual. Autism is not the main feature
of the character in the books, nor should it be. Instead, the books show how
the character is living a productive life as an individual, who just so happens
to be autistic. In this way, the character is human first, themselves second,
and the other identity, autism, is incidental to that.</i></div>
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<br /></div>
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<b>You are a super hero
expert. Who’s your favorite super hero and why? What’s your most memorable
super hero moment? </b><span class="apple-converted-space"><b><span style="background: white; color: #141823; font-family: Helvetica; font-size: 9.0pt;"> </span><span style="background: white; color: #141823;">You
do p</span></b></span><b><span style="background: white; color: #141823;">ublic Relations for Visions Comic Art
Group, can you tell us a little about that?<o:p></o:p></span></b></div>
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<br /></div>
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<i>A bit of background
first. I have been reading comic books of some form or another since I was at
least four years old. I started off with Scrooge McDuck comics, and have been
reading mainstream superhero comics since shortly thereafter. I have a number
of favorite superheroes for different reasons. I like the regular Daredevil,
Matt Murdock, because he is the original disabled superhero, being blind and
yet extremely powerful with his extra senses and his success in life. I also
like Wiccan and Hulkling of the Young Avengers because they are young guys who
are gay, madly in love, and save the world on a regular basis. Lastly, I like
the original Wildstorm Comics team The Authority, because they actually get
stuff done. Imagine a team of superheroes who are not afraid to overthrow
governments, kill people, and even take over the <st1:country-region w:st="on"><st1:place w:st="on">United States</st1:place></st1:country-region> in order to create a
better world. It’s kind of messed up, but it makes for a very interesting read.
Please keep in mind that that title is not fit for children.<o:p></o:p></i></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi22MKfjaV58a4qHuqU2PgGTUNHVI-WQBqqjTp_pHA9BBfP-fUJvKiIT_mwKwOtU7HHC-p19VGq0LZwrY8-ArnLnU4TOhxBKCP7WM0KpdRL1asal23yCrCluuDv4hy0YF7zcX_kBQk7ZMJ-/s1600/IMG_7703.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi22MKfjaV58a4qHuqU2PgGTUNHVI-WQBqqjTp_pHA9BBfP-fUJvKiIT_mwKwOtU7HHC-p19VGq0LZwrY8-ArnLnU4TOhxBKCP7WM0KpdRL1asal23yCrCluuDv4hy0YF7zcX_kBQk7ZMJ-/s1600/IMG_7703.JPG" height="300" width="400" /></a></div>
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<br /></div>
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<b><i>Alec Frazier’s collection of
Northstar comics. The first issue on the top is an extremely rare completely
mint edition of the coming-out issue, still in its original bag from 1992. The
first issue on the bottom is a limited edition copy of the wedding issue. The
remaining issues on the wall are draw your own cover variants of the wedding
issue done by a number of artists.<o:p></o:p></i></b></div>
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<b><i><br /></i></b></div>
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<i>I have two most
memorable superhero moments. The first one took place back in 1992, when the
superhero Northstar said the words “I am gay!” becoming the first ever
superhero to come out of the closet as homosexual. This was courageous, as only
a few years earlier it was illegal to do this. There have since been a number
of superheroes who have come out as homosexual, bisexual, transsexual, and many
other sexual orientations. Northstar himself has gotten married in the meantime.<o:p></o:p></i></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinT2I27Cxlv543HVNRaRPRHmU15V2yMhSXmz6fCCPwwr0fkLOWFG8gfFTF9xARwMobFDKfyGMrMjFXl62eQhsN-t482cWTrcO8k8CIXirODuJAZ7j7824tSY_LFze8i5wH4B3gZjehXuSp/s1600/IMG_6969.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinT2I27Cxlv543HVNRaRPRHmU15V2yMhSXmz6fCCPwwr0fkLOWFG8gfFTF9xARwMobFDKfyGMrMjFXl62eQhsN-t482cWTrcO8k8CIXirODuJAZ7j7824tSY_LFze8i5wH4B3gZjehXuSp/s1600/IMG_6969.JPG" height="400" width="300" /></a></div>
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<br /></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<b><i>Alec Frazier’s copy of Daredevil:
End of Days #7.<o:p></o:p></i></b></div>
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<b><i><br /></i></b></div>
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<i>The second moment was
in Daredevil: End of Days #7, which premiered on April 17, 2013. In it, the
Daredevil of the future takes off his mask, revealing that he is the autistic
Tim Urich. It is a watershed moment in comics. In the 1980s, there was an
autistic character named Dehman Doosha, also known as Jonny Do, in a team
called Psi-Force put out by Marvel Comics. However, the character’s autism was
not portrayed correctly at all, and it can be argued therefore that he did not
have autism at all. Tim Urich is the very first character to be properly and
positively portrayed with autism. Since then, a man named Dave Kot has come out
with a series called Face Value Comics, which heavily emphasizes the autism of
the main character. I personally do not agree with this point of view, as
autism should not have to define us on the autism spectrum, but I encourage any
who are interested to look into Face Value Comics.<o:p></o:p></i></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7cZ4pd0qT3k8a7i9HhKEco7OjezQQJGd8fRfRz_XOGzpvp23ezkQ0OklRneUi_vzJF8a8gn8SI8Q2aGoMvf5kFu_FV0wOSMsk-MbhM-NKylOEo0HbUcKR_qixiWbCuSnIgLFV57p9TK25/s1600/IMG_1769.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7cZ4pd0qT3k8a7i9HhKEco7OjezQQJGd8fRfRz_XOGzpvp23ezkQ0OklRneUi_vzJF8a8gn8SI8Q2aGoMvf5kFu_FV0wOSMsk-MbhM-NKylOEo0HbUcKR_qixiWbCuSnIgLFV57p9TK25/s1600/IMG_1769.JPG" height="300" width="400" /></a></div>
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<div align="center" class="MsoNormal" style="text-align: center;">
<b><i>Creators at the first meeting of
the current incarnation of Visions Comic Art Group. </i></b></div>
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<b><i>Emil Novak, Sr. is on the
right.<o:p></o:p></i></b></div>
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<b><i><br /></i></b></div>
<div class="MsoNormal" style="text-align: justify;">
<i>As I mentioned, I have
always been involved with comics. In 2004 or 2005, I joined the oldest
continuously active comic book club in the country, and possibly the world, the
Comic Book Club of <st1:city w:st="on">Ithaca</st1:city> (CBCI), in <st1:place w:st="on"><st1:city w:st="on">Ithaca</st1:city>, <st1:state w:st="on">New York</st1:state></st1:place>.
I started cohosting a number of their conventions, and when I moved to <st1:city w:st="on">Buffalo</st1:city>, I started cohosting <st1:city w:st="on"><st1:place w:st="on">Buffalo</st1:place></st1:city> Comicon. I also take a number of
photos at those conventions. There is a multitalented genius of a businessman
in <st1:city w:st="on">Buffalo</st1:city>, <st1:state w:st="on">New York</st1:state>
named Emil Novak, Sr. He runs Queen City Bookstore, the local comic book store,
and he also runs <st1:city w:st="on"><st1:place w:st="on">Buffalo</st1:place></st1:city>
Comicon. In the 1980s, he started a group called Visions Comic Art Group, a
group of local artists, writers, and other artistic talent to create comics
right here in <st1:city w:st="on"><st1:place w:st="on">Buffalo</st1:place></st1:city>.
He recently restarted the group in its current incarnation. I have been
privileged to be their official publicist and photographer from the beginning
of the current incarnation. We have since put out an anthology over one hundred
pages long, and will be coming out with another one in October. They have also
helped me with the printing of my book. I owe a lot to Emil Novak, Sr. for
mentoring me through the creative process.<o:p></o:p></i></div>
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<i><br /></i></div>
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<i><br /></i></div>
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<b>Patti has asked- If
your life was a movie, what actor would portray you and why?<o:p></o:p></b></div>
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</div>
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<i>I would probably go
with having Jude Law play me. His hair is naturally similar to mine, although
he often wears a hairpiece for his roles. He is also not averse to packing on
the pounds for a role. If he could do that the same way that Christian Bale did
for American Hustle, that would be great. Jude Law is also known for
intellectual roles, of which my life certainly would fit the bill. Yes, he is
over a decade older me, but I would want the majority of my movie to be set ten
years from now, when I am more established. He also does very well with
glasses. In fact, he played Karenin in Anna Karenina, which if you subtract the
beard, resembles an older me quite well.
However, I am not only intellectual, but also a very fun person with a
great sense of humor and a number of quirks. If the movie were to take place
about thirty years down the road, I would have preferred for the late James
Gandolfini to have the role. Although Jude Law best embodies me as an
intellectual, Gandolfini would be best playing me as a fun guy. Overall, I
would probably want Christopher Heyerdahl to narrate the story of my life in
the voice of Marcus of the Volturi from Twilight. The life he would be
narrating would probably not fit that voice, but there is so much authority in
Marcus’s tone that I demand it!<o:p></o:p></i></div>
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<i><br /></i></div>
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<b>This ends our first installment of Alec's interview. Join us next week for Alec's advice on travel, transportation and education and to learn about the buffalo who travels the world!</b></div>
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<b><br /></b></div>
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<b>Thank you for joining us, hope to see you next time.</b></div>
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<b><br /></b></div>
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<b><br /></b></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-43374332336737184122014-09-03T12:39:00.002-07:002014-09-03T12:40:57.479-07:00We interrupt the previously scheduled interview for a timely PSA...<center style="text-align: left;">
<span style="color: #141823; font-family: Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="background-color: white; font-size: 14px; line-height: 19.31999969482422px;">Due to an overwhelming response to our interview with Alec Frazier, we're rescheduling Alec's replies for next Wednesday, September 10, 2014. </span></span></center>
<center style="text-align: left;">
<span style="color: #141823; font-family: Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="background-color: white; font-size: 14px; line-height: 19.31999969482422px;"><br /></span></span></center>
<center style="text-align: left;">
<span style="color: #141823; font-family: Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="background-color: white; font-size: 14px; line-height: 19.31999969482422px;">In it's place, I'm sharing a guest post from someone my family has grown close to over the years with a timely PSA about a quiet cancer many don't often talk about. </span></span></center>
<center style="text-align: left;">
<span style="color: #141823; font-family: Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;"><span style="background-color: white; font-size: 14px; line-height: 19.31999969482422px;"><br /></span></span></center>
<center style="text-align: justify;">
<span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.31999969482422px; text-align: left;">Miss Marmy, take it away...</span></center>
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<span style="background-color: white; font-size: 14px; line-height: 19.31999969482422px; text-align: left;"><span style="color: #141823; font-family: Helvetica, Arial, lucida grande, tahoma, verdana, arial, sans-serif;">September is Thyroid Cancer Awareness Month</span></span></center>
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<span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.31999969482422px; text-align: left;"><br /></span></center>
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<span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.31999969482422px; text-align: left;">One year ago, I was newly married, in a new state, walking into a doctors office for a first-time-patient physical. I breezed through my medical history, informing my new doctor that I had a thyroid disorder but had been taking a pill every day since I was a kid and was "fine". As far as I could tell, I didn't have symptoms. My levels were stable. Everything seemed fine. When she said she wanted to do an ultrasound, I remember looking at my husband and apologizing to him because he would have to take me to the hospital for this "pointless" scan which I felt would be a waste of our time.</span><span style="background-color: white; color: #141823; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 19.31999969482422px; text-align: left;"> </span></div>
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My fantastic husband, thankfully, values my health and it's upkeep more than I do. We followed doctors orders, sat and watched as the technician did her work, and there on the screen almost immediately we could see the thing, I would later realize, my life was being saved from. </div>
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I found myself at the beginning of a journey that would ultimately lead me to face an enemy that had been biding it's time inside of me: one I never before knew to fear. </div>
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They call thyroid cancer "the good cancer" because it's slow growing and typically not as externally terrifying. The go-to treatment is not usually chemotherapy. The prognosis is not usually one that sends you off with a number of days left to live and a bucket list to tackle. The mortality rate remains relatively low, yet the quality of life declines. About 62,980 new cases of thyroid cancer (47,790 in women, and 15,190 in men) will occur this year alone in the United States. That's 62,980 lives with plans and ambitions and loved ones, turned upside down, put on hold, battling to find the strength to overcome what will be a war waged internally for the rest of their lives. This cancer - this "good cancer" is a forever deal. It's that eerie feeling of being followed; the nagging knowing at the back of your mind that it can always come back to once again stop you in your tracks.</div>
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Now, I've been blessed. I've had the best of the best medical care and so far, certainly the best outcome we could hope for. My family and I are back on track, moving ahead, and enjoying a life free of my stupid, sick, cancer-corrupted, thyroid. I try not to dwell on the what-if's or what-could-be's, but I now have a scar that serves as a reminder of where I've been and where I could have ended up had someone not thought to check my neck.</div>
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My wish this Thyroid Cancer Awareness Month is that others learn from my experience and not shrug off that butterfly-shaped powerhouse inside of you. Pay attention to your body. There may be a lump you can feel, a persistent soreness to your throat, or your hormones might feel out of sorts. You might be fatigued, experiencing body aches, putting on or losing weight without effort, or maybe you've simply lost interest in the things you used to love. </div>
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Perhaps, like I had been, you've been diagnosed with an imbalance, were put on a pill to correct it, and you've assumed all would always be well. I truly hope that you're right - and you very well could be - but regardless of your confidence in the matter, check your neck.</div>
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Early detection is key. If you're curious as to just how far this disease can go, I refer you to Esther Earl's story chronicled in This Star Won't Go Out. Thanks to her and the inspiration she provided to John Green for The Fault In Our Stars, thyroid cancer has been brought to the public's attention unlike ever before. I pray that it serves as the push anyone with this quiet destroyer present within them needs to find what's ailing them and fight it!</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-26143008897463571322014-08-24T06:52:00.001-07:002014-09-01T20:40:20.655-07:00<center style="text-align: justify;">
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<span style="background-color: white; color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-align: left;">Questions for Alec, an interview with Alec Frazier</span><br style="background-color: white; color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-align: left;" /><br style="background-color: white; color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-align: left;" /><span style="background-color: white; color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; text-align: left;"><span style="font-size: 14px; line-height: 20px;">As you know, I reconstructed the blogger recently to make it easier for consumers who have disabilities to connect with the goods and services they need. </span></span><br style="background-color: white; color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-align: left;" /><br style="background-color: white; color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-align: left;" /><span style="background-color: white; color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-align: left;">In building the site and re-editing my story, Impact, for publishing, I've encountered some really neat people. In the coming weeks, I</span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px; text-align: left;">'ll be interviewing different individuals. Some are people with disabilities, others have designed exciting new products in the field of assistive technology, still others work in disability service in some capacity.<br /><br />My first interviewee is my friend and fellow Team Impact member, Alec Frazier. Alec is a seasoned disability rights advocate who owns and operates the business, Autistic Reality <a href="http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.nothingaboutuswithoutus.net%2F&h=-AQF0exEa&enc=AZPhIdaKdHCV8g7lbtx-3uCE68Yu_3-qlMQvR48MruqZXpfLNCnCxypBktR80-Nz0rm5eu2B59SrknvWsjCDVfEsxz6Rkb-_X0puG3ySfIilC_PsC9woagFHoDI89iZJfRNdlEId9idHL9xi4mQmOhAw&s=1" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://<wbr></wbr><span class="word_break" style="display: inline-block;"></span>www.nothingaboutuswithoutus.net<wbr></wbr><span class="word_break" style="display: inline-block;"></span>/</a><br /><br />Alec has a number of diagnoses, including Hip Displasia, Sensory Integration Disorder, Attention Deficit Disorder, Dysgraphia and Digital Atonia, Bipolar Disorder, Obsessive Compulsive Disorder (OCD) and Asperger's Syndrome. Feel free to ask any questions about these conditions. Alec will answer!<br /><br />Alec is autistic and grew up in a progressive household with parents who refused to place him in a segregated educational setting and as a result was mainstreamed throughout his entire educational career.<br /><br />Alec received his Associate’s from TC3, but has also taken classes at the University of Colorado at Boulder and Cornell. He is currently obtaining his B.A. in Political Science from the University at Buffalo as well as obtaining his M.A. in “Humanities - Interdisciplinary” with a formal Concentration in Disability Studies.<br /><br />Alec works as a Community Advocate for WNY Independent Living Inc. (WNYIL), a Public Speaker and Advocate in Disability Rights Advocacy, a Student Advisory Council (SAC) Affiliate Liaison for the US Business Leadership Network (USBLN®), and does Public Relations for Visions Comic Art Group.<br /><br />I have to admit, my knowledge of autism is rather vague and I'm quite interested in learning more. Sadly, when asked about autism, many of us think back to stories someone has told of a child, shut off from society and imprisoned in their own world, or we flash back to that Tom Cruise/ Dustin Hoffman movie, Rainman. I don't think either is a realistic picture of autism.<br /><br />In my story, Impact, I try to dispel myths about disability. It's my hope, that by interviewing Alec, we can become more aware of autism.<br /><br />Alec has offered a frank discussion about his life with autism and has invited our questions.<br /><br />I have a number of my own questions. Is there something you've always wanted to know about autism, but were afraid to ask?<br /><br />Do you know someone with autism? Do you have questions about accessing services for someone who is autistic?<br /><br />Do you have questions about independent living?<br /><br />Please post your questions in my facebook community. https://www.facebook.com/dacharlesauthor<br /><br />The interview will post the following Wednesday, September 4, 2014 right here.<br /><br />We will accept questions until 8/30.<br /><br /><br />~nise</span></center>
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Unknownnoreply@blogger.comtag:blogger.com,1999:blog-3449326813924813517.post-47292290796823194292014-08-13T07:23:00.000-07:002014-08-14T15:45:10.534-07:00A sad farewell...<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana; font-size: 10pt; line-height: 150%;">I
had planned to write today, but it's been difficult to get my mind off the loss
of one of <st1:country-region w:st="on"><st1:place w:st="on">America</st1:place></st1:country-region>'s
most beloved funny men, Robin Williams. It's hard for me to remember a time
when he wasn't a part of our lives. My house didn't have cable growing up, so our
exposure to mainstream entertainment was minimal, but I remember fondly
spending evenings at my grandmother's house in front of the TV watching such
classics as Happy Days, Laverne and Shirley and of course, Mork and Mindy. My
exposure to comedy was limited to more mature entertainers like Jack Benny, George Burns,
and Uncle Miltie. Robin Williams and his youthful brand of funny was something
I could relate to and embrace.<o:p></o:p></span></div>
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<span style="font-family: Verdana; font-size: 10pt; line-height: 150%;">Through
the years I've enjoyed the wit and humor of this talented entertainer and it
saddens me beyond words to learn that he's gone.<o:p></o:p></span></div>
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<span style="font-family: Verdana; font-size: 10pt; line-height: 150%;">Often
when one passes far too soon, as Robin has, we see an outpouring of love
towards the family, with fond remembrances of the person who has passed. It's
encouraging to see, with Robin's death, an outpouring of love towards all of
humankind-compassionate m</span><span style="font-family: Verdana; font-size: 10pt; line-height: 150%; text-indent: 0.5in;">essages of encouragement, support and solidarity for individuals
who battle depression on a daily basis; so while Robin's death is a terrible,
tragic loss, perhaps from it we'll learn to be more understanding and
compassionate towards those who struggle daily with an invisible condition many
of us cannot comprehend.</span></div>
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<span style="font-family: Verdana; font-size: 10pt; line-height: 150%;">I
think it's hard for many to reconcile Robin's battle with depression and his
public persona, but I think fellow comedian, Josh Sundquist, best summed it up.<o:p></o:p></span></div>
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<i><span style="font-family: Verdana; font-size: 10pt; line-height: 150%;">"How
could someone so funny commit suicide?<o:p></o:p></span></i></div>
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<i><span style="font-family: Verdana; font-size: 10pt; line-height: 150%;">But
that's the thing about comedy. It frequently grows out of deep personal pain.<o:p></o:p></span></i></div>
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<i><span style="font-family: Verdana; font-size: 10pt; line-height: 150%;">To
the audience, comedy appears to be a sign of internal joy, overflowing
happiness that bubbles over into jokes.<o:p></o:p></span></i></div>
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<i><span style="font-family: Verdana; font-size: 10pt; line-height: 150%;">But
for the comic, it’s often simply a way to deal with the pain. An outward
expression of inner demons." -Josh Sundquist, August 11, 2014<o:p></o:p></span></i></div>
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<span style="font-family: Verdana; font-size: 10pt; line-height: 150%;">Depression
is an invisible illness, often shrouded in secrecy. We don't want to talk about
it and many who live with it hide it well. Because of this, many people who
have not personally experienced depression have difficulty recognizing it as a real disorder.
I think Robin's death has been a much needed wake-up call to us all, shining a
light on a subject many people don't understand. <o:p></o:p></span></div>
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<span style="font-family: Verdana; font-size: 10pt; line-height: 150%;">By
not validating someone's depression and by treating it like something that can
be turned on and off at will exacerbates the situation. Seemingly innocuous
comments are hurtful and can often send someone dealing with depression into a
tailspin, so please, use your words carefully and be considerate to others. A
compassionate gesture can save a life. Be nice, everyone is fighting a battle
you know nothing about...<o:p></o:p></span></div>
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<span style="font-family: Verdana; font-size: 10pt; line-height: 150%;">Rest
easy, Robin. You’ll be sorely missed.<o:p></o:p></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-19960136985020744482014-07-19T20:03:00.000-07:002014-07-21T17:28:10.794-07:00What is Independent Living?<b>What is Independent Living?</b><br />
<i><br /></i>
<i>What is Independent Living?</i><br />
<i><br /></i>
Most Americans take for granted opportunities they have -- regarding living arrangements, employment situations, means of transportation, social and recreational activities, and other aspects of everyday life.
For many Americans with disabilities, however, barriers in their communities take away or severely limit their choices. These barriers may be obvious, such as lack of ramped entrances for people who use wheelchairs, lack of interpreters or captioning for people with hearing impairments, lack of Braille or taped copies of printed material for people who have visual impairments.
Other barriers -- frequently less obvious -- can be even more limiting to efforts on the part of people with disabilities to live independently, and they result from people's misunderstandings and prejudices about disability. These barriers result in low expectations about things people with disabilities can achieve.
So, people with disabilities not only have to deal with the effects of their disabling conditions, but they also have to deal with both kinds of barriers. Otherwise, they are likely to be limited to a life of dependency and low personal satisfaction.
This need not occur. Millions of people all over America who experience disabilities have established lives of independence. They fulfill all kinds of roles in their communities, from employers and employees to marriage partners to parents to students to athletes to politicians to taxpayers -- an unlimited list. In most cases, the barriers they face haven't been removed, but these individuals have been successful in overcoming, or at least dealing with them.<br />
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<i>A Definition of Independent Living</i><br />
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What is independent living? Essentially, it is living just like everyone else -- having opportunities to make decisions that affect one's life, able to pursue activities of one's own choosing -- limited only in the same ways that one's non-disabled neighbors are limited.
Independent living should not only be defined in terms of living on one's own, being employed in a job fitting one's capabilities and interests, or having an active social life. These are only a few aspects of living independently. Independent living has to do with self-determination. It is having the right and the opportunity to pursue a course of action. And, it is having the freedom to fail -- and to learn from one's failures, just as non-disabled people do. </div>
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There are, of course, individuals who have certain mental impairments which may affect their abilities to make complicated decisions or pursue complex activities. For these individuals, independent living means having every opportunity to be as self-sufficient as possible.<br />
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Independent living isn't easy, and it can be risky. Millions of people with disabilities rate it higher than a life of dependency and narrow opportunities and unfulfilled expectations.
Self-determination is having the right and the opportunity to pursue any course of action. It is being free to fail and to learn from those failures, in the same way as people without disabilities.<br />
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<i>Independent Living Centers</i><br />
<i><br /></i>
Fortunately, people with disabilities don't have to do it all on their own. Independent Living Centers are a kind of service organization which is designed specifically to assist people with disabilities in achieving and maintaining independent lifestyles.
These organizations, called independent living centers, are extraordinary: they are run by people with disabilities who themselves have been successful in establishing independent lives. These people have both training and the personal experience to know exactly what is needed to live independently and, they have a deep commitment to assisting other disabled people in becoming more independent.<br />
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<i>Services of Independent Living </i><i>Centers</i><br />
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Centers offer a wide variety of services. Four are essential to efforts of people with disabilities to live independently:<br />
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<i>A. Information and Referral</i><br />
<i><br /></i>
Centers maintain comprehensive information files on availability in their communities of accessible housing, transportation, employment opportunities, rosters of persons available to serve as personal care attendants, interpreters for hearing impaired people, or readers for visually impaired people, and many other services.<br />
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<i>B. Independent Living Skills Training</i><br />
<i><br /></i>
Centers provide training courses to help people with disabilities gain skills that will enable them to live more independently; courses may include using various public transportation systems, managing a personal budget, dealing with insensitive and discriminatory behavior by members of the general public, and many other subjects.<br />
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<i>C. Peer Counseling</i><br />
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Centers offer a service in which a person with a disability can work with other persons who have disabilities can work with other persons who have disabilities and who are living independently in the community. The objective is to explore options and to solve problems that sometimes occur for people with disabilities, for example, making adjustments to a newly acquired disability, experiencing changes in living arrangements, or learning to use community services more effectively.<br />
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<i>D. Advocacy</i><br />
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Centers provide two kinds of advocacy:<br />
1. <i>Consumer advocacy</i>, which involves center staff working with persons with disabilities to obtain necessary support services from other agencies in the community.<br />
2. <i>Community advocacy</i>, which involves center staff, board members, and volunteers initiating activities to make changes in the community that make it easier for all persons with disabilities to live more independently. 3<i>. Other Services</i>
Centers also offer a number of other services, generally depending on specific needs of their consumers and lack of availability elsewhere in the community. Among the most frequently provided services are community education and other public information services, equipment repair, recreational activities, and home modifications.<br />
<br />
<i>How Independent Living Centers Differ from Other Service Organizations</i><br />
<i><br /></i>
There are many different types of organizations which serve people with disabilities -- state vocational rehabilitation agencies, group homes, rehabilitation hospitals, sheltered workshops, nursing homes, senior centers, home health care agencies, and so forth. These organizations provide valuable services and are important links in the network of services that help people with disabilities maintain independent lifestyles.
What makes independent living centers very different from these other organizations is that centers have substantial involvement of people with disabilities making policy decisions and delivering services. Why this emphasis on control by people with disabilities? The basic idea behind the independent living is that the ones who know best what services people with disabilities need in order to live independently are disabled people themselves.<br />
<br />
<i>The Independent Living Movement</i><br />
<i><br /></i>
In the late 1960s and the early 1970s, this idea led people with disabilities from around the country to take active roles on local, state, and national levels in shaping decisions on issues affecting their lives. A major part of these activities involved formation of community-based groups of people with different types of disabilities who worked together to identify barriers and gaps in service delivery. To address barriers, action plans were developed to educate the community and to influence policymakers at all levels to change regulations and to introduce barrier-removing legislation. To address gaps in services, a new method of service delivery was conceived -- one which has people with disabilities determining kinds of services essential to living independently, has people with disabilities directing the deliver of these services, and has people with disabilities actually providing these services.
The earliest center was formed in 1972 in Berkeley, California soon followed that same year by centers in Boston, MA and Houston, TX. In 1978, following effective advocacy by people with disabilities and their supporters all over the country, federal legislation was passed that provided funding to establish independent living centers (Title VII of the Rehabilitation Act). Today, there are centers in virtually every State and U.S. territory.<br />
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<i>The Role of People with Disabilities in Centers</i><br />
<i><br /></i>
These centers can be easily distinguished from other service agencies by the extent of involvement of people with disabilities. Independent living centers have a majority of people with disabilities on their governing boards, and they hire qualified people with disabilities to fill management and service delivery positions.<br />
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<i>Disability Groups Served by Centers</i><br />
<i><br /></i>
Centers typically serve a wide variety of disability groups, including people with mobility impairments -- which may be caused by spinal cord injury, amputation, neuromuscular disease, Cerebral Palsy, and so forth -- as well as people who have visual impairments, hearing impairments, mental retardation, mental illness, traumatic brain injury, and many other disability groups.
The extent to which a center serves a given disability group will vary widely from center to center, dependent very much on availability and quality of services from other community service organizations, the financial resources of a center, and extent to which representatives of that disability group have chosen to be involved in the center. People running independent living centers believe very strongly that prior to initiating services to a disability group, efforts should be made to recruit representatives of that group to serve in board, staff, and advisory roles. In this way, the people who are to benefit from the services have a say in designing and delivering the services.<br />
<i><br /></i>
<i>How to find Independent Living Centers</i><br />
<i><br /></i>
If you are interested in locating the center nearest you, there are several approaches you might try:<br />
A. Search on-line for Independent Living Centers in Pennsylvania<br />
B. Look in your local telephone directory under social services. Try both the regular directory and the yellow pages.<br />
C. Contact the main office of the State Vocational Rehabilitation Agency (your local public librarian should be able to help you obtain its address and telephone number) and request that the person responsible for overseeing the agency's independent living program provide you with information on centers in your state.<br />
D. You may also contact the Rehabilitation Services Administration's Office of Independent Living (330 C Street, S.W., Switzer Bldg., Washington, D.C., 20202, 202-732-1400). Staff members will have a listing of the approximately 150 centers it funds. In addition, you may wish to contact us at ILRU. We maintain a comprehensive directory of over 350 programs providing independent living services. This directory is available for $8.50. For persons interested in locating programs in a specific area, individualized searches can be made using the <a href="http://www.ilru.org/projects/cil-net/cil-center-and-association-directory">ILRU National Database on Independent Living Programs</a>.<br />
<br />
<i>A Final Word on Independent Living</i><br />
<br />
Changes that make life more satisfying don't occur overnight. For people who are willing to work toward greater independence, independent living centers can help put the pieces together.<br />
<br />
About this Publication
This publication was developed by the <a href="http://www.ilru.org/">ILRU Research and Training Center on Independent Livingof Houston</a> as part of its National Technical Assistance Project for Independent Living. It was written by Laurel Richards and Quentin Smith.
ILRU is a national center for information, research, training, and technical assistance for independent living. One of its purposes is to improve the spread and utilization of results of research and demonstration projects in the field of independent living.
The ILRU Research and Training Center of Independent Living is sponsored by <a href="http://www2.ed.gov/about/offices/list/osers/nidrr/index.html?src=mr%20">NIDRR (National Institute on Disability and Rehabilitation Research)</a>, U.S. Department of Education. The content of this publication is the responsibility of ILRU, and no official endorsement by the Department of Education should be inferred.<br />
<br />
For additional copies of this publication or for more information, contact:
ILRU
3233 Weslayan, Suite 100
Houston, TX 77027
Voice: 713-960-9961
TDD: 713-960-0145<br />
<br />
ILRU Field Work Staff
A National Technical Assistance Project For Independent Living
<br />
Laurie Gerken
Director of Technical Assistance<br />
Shirley Herzog
Administrative Assistant<br />
Laurel Richards
Director of Training<br />
Renna Brown
Administrative Secretary<br />
Margaret A. Nosek, Ph.D.
Director of Research<br />
Rose Shepard
Materials Distribution SupervisorUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-35801863720492175342014-06-28T12:46:00.001-07:002014-07-19T20:05:44.513-07:00Smiling thanks to Amazon.comDid you know...
When you add the prefix smile. before amazon.com in your browser, a portion of what you spend is donated to a charity of your choice by Amazon? ...and the best part is that it doesn't cost you anything extra.
As lovers of books, we could make a huge impact just by typing those six extra characters. Many of us use Amazon for a number of other purchases as well.
So remember... <a href="http://www.smile.amazon.com/">www.smile.amazon.com</a>
I chose St. Jude Children's Research Hospital.
Who will you choose?Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-33533164020679409142014-05-22T21:31:00.002-07:002014-07-21T17:30:40.471-07:00Down Syndrome Awareness <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij7ia2-bA7AEFeui9dACMCZC3dp15M64IV8ea8CrucdQ1wtw9TE6eIZzgCrZwmFrlsCtIAluQTFyMYpguF6BSWVmomDpMC5tWtqt3W7WEGQtGthhf-g6OQ7mr07sZOSaDRWneX0eHiaZXD/s1600/_DSC0171.jpg" imageanchor="1"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij7ia2-bA7AEFeui9dACMCZC3dp15M64IV8ea8CrucdQ1wtw9TE6eIZzgCrZwmFrlsCtIAluQTFyMYpguF6BSWVmomDpMC5tWtqt3W7WEGQtGthhf-g6OQ7mr07sZOSaDRWneX0eHiaZXD/s320/_DSC0171.jpg" /></a><br />
<br />
From Justlikeyoufilms.org a short film on Down Syndrome awareness.<br />
<a href="http://www.justlikeyoufilms.org/?gclid=CjgKEAjwwPabBRCXo46OtM_RhGMSJACgCeqA2vV9ezox4hytkx6YhygFtdYJkDnIHbLJ1EzqbNBsTfD_BwE">What is Down Syndrome?</a>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-83546203179704533382013-01-02T15:00:00.000-08:002014-07-21T17:31:27.389-07:00MiCASSA LegislationIn my writing, I've referred to a grass roots group of advocates- ADAPT. ADAPT is comprised of individuals with disabilities and the people who care about them. Their members commit acts of civil disobedience to raise awareness and bring about change.<br />
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One such instance was the MiCASSA Legislation, penned in Georgia between ADAPT and Newt Gingrich.<br />
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An incredible account of this event, which occurred in November, 1996 can be found in a former article of New Mobility magazine.<br />
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<a href="http://www.newmobility.com/articleView.cfm?id=362">http://www.newmobility.com/articleView.cfm?id=362</a><br />
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Sadly, patients continue to be neglected and abused in institutions every single day. Fred Savage starred in a fact based movie about Mike Mills, a young man with Muscular Dystrophy. “When you Remember Me” is a story that will shake you to your core. I promise.<br />
<br />
While it is not my intention to upset anyone in the nursing home industry, I prescribe to the belief that community-based care is an alternative to long term care facilities that has been under-utilized and under funded for far too long. It may not be appropriate for every individual to live within the community in their own home, but personal experience has proven to me that individuals who receive home and community based care funding are healthier and happier than individuals who live within a long term care facility.<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-64801215870802794352012-05-26T12:12:00.001-07:002014-07-21T17:32:24.094-07:00An introduction to the world of service animals.Chapter 58 of Impact centers primarily around Steven's introduction to the world of service animals.
People who have disabilities rely on service animals for all aspects of daily living, from dressing and bathing to assistance retrieving items and support while tranferring, pivoting and walking.
Deb Bauer from Canine Partners for Life provided a wealth of information, as did an article by Joan Froling entitled Assistance Dog Tasks which explains in great detail the various tasks a service dog can perform. www.K94life.org
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo-iIaNDaV3ScVSzU8smIf2Z4kw9SodLuTbCcaznLpvO-O1osVHQgapul4cJ4rLPElUfSTDYjwHax8pi4nut6gpl-xyPEdrFAhuJHNmfN15ZpllFQ1Dhu7XaH0spTU9eItGWIdZV75JsFB/s1600/image004.gif" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo-iIaNDaV3ScVSzU8smIf2Z4kw9SodLuTbCcaznLpvO-O1osVHQgapul4cJ4rLPElUfSTDYjwHax8pi4nut6gpl-xyPEdrFAhuJHNmfN15ZpllFQ1Dhu7XaH0spTU9eItGWIdZV75JsFB/s200/image004.gif" height="75" width="171" /></a></div>
Joan's article can be found here: http://www.iaadp.org/tasks.html
As a way of thanking Deb and K94life, I ask that you check out the following information: Canine Partners for Life has been selected as a finalist in the Toyota 100 Cars for Good program. They could really use your vote on June 26, to help them win the vehicle of their choice. You can vote here: 100carsforgood.comUnknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-18166798624863116122012-01-22T16:43:00.000-08:002014-07-21T17:32:38.479-07:00Bathroom technologyThe Sok tub I mention in Chapter 55 of Impact can be found here: http://www.us.kohler.com/tech/products/why_sok.jsp<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWaCEDzVLIjZirSjoR87qV1wLSrEzpw5eh7jqqnS7xKQzHsj3YwnBmqWXq49k8KSY2DXW6QX4drF4nueuYumqcqLZ_owcWJfRrb_D62bHPVhoYNn5LxHSXOtTtFkOBVut1ZrXvgbW2hCXC/s1600/sok_tub_woman.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWaCEDzVLIjZirSjoR87qV1wLSrEzpw5eh7jqqnS7xKQzHsj3YwnBmqWXq49k8KSY2DXW6QX4drF4nueuYumqcqLZ_owcWJfRrb_D62bHPVhoYNn5LxHSXOtTtFkOBVut1ZrXvgbW2hCXC/s200/sok_tub_woman.jpg" height="111" width="200" /></a></div>
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The bath aide or Hoyer Bath Buddy can be found here:http://www.spinlife.com/Hoyer-Water-Power-Tublift-Bath-Lifts/spec.cfm?productID=71205<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizyh8fc4jIA4VpTTGKkw05gYu5Y2Owj7FS2_cDmIAVX8DuIDIhbzhoqFbIDACq78tthKzqsyF7hQFj53zRaX1TJJc1T7IORZXKniPS8wHoYCe3wVdGTuGUBtz-gt050pKcocjQjWYDKCUJ/s1600/bath+buddy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizyh8fc4jIA4VpTTGKkw05gYu5Y2Owj7FS2_cDmIAVX8DuIDIhbzhoqFbIDACq78tthKzqsyF7hQFj53zRaX1TJJc1T7IORZXKniPS8wHoYCe3wVdGTuGUBtz-gt050pKcocjQjWYDKCUJ/s200/bath+buddy.jpg" height="200" width="200" /></a></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3449326813924813517.post-40294958186888325952011-11-27T21:40:00.000-08:002014-07-21T17:32:54.630-07:00An Interview with 'Flagpole Mom' Dee LesneskiAs with many aspects of Impact, my account of Flagpole Mom, Dee Lesneski is gleaned from a real life situation.<br />
<br />
While I've toned it down, you can read Dee's personal account of her twenty days chained to a flagpole here: www.mouthmag.com/says/deesays.htm in an interview with Josie Byzeck of Mouth Magazine.<br />
<br />
As the mother of a special needs child who had to fight for so many issues, Dee's situation incensed and enraged me. It was a real learning experience to spend a day on the school grounds outside of Pittsburgh, PA watching it all unfold.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-75553716643030439932011-08-13T21:19:00.000-07:002014-07-21T17:33:12.127-07:00Information on ADA Cases in Regards to Inmates with DisabilitiesA number of people requested more information on the handling of disabled individuals within our prison systems. <br />
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While these aren't the norm, they are all legal claims made by inmates who felt their Eighth Amendments Rights were being ignored.<br />
<br />
While I believe in the mechanics of our judicial system, I also believe every person with a disability has the right to the security of their individual rights under the ADA, incarcerated or not.<br />
<br />
It's important to note that the ADA does not apply to federal agencies such as the Federal Bureau of Prisons and some of these cases were decided solely in that regard.<br />
<br />
Because it's a ten page document I've given it a page of its own. You can find it here: <a href="http://eighthamendmentandadaclaims.blogspot.com/">http://eighthamendmentandadaclaims.blogspot.com/</a><br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3449326813924813517.post-48313857198990427272011-08-13T20:35:00.001-07:002014-06-01T22:34:25.089-07:00Eighth Amendment CasesUnknownnoreply@blogger.com0