Patti's Blog - Advocate for Elders, People with Disabilities and Their Families

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My Story: Keeping a Secret to Achieve Workforce Inclusion

Excerpt from: Disability Blog (click for full article)

 

My name is John W. Quinn and I was born with cerebral palsy.  I couldn’t walk on my own until the age of four, due to being partially paralyzed on one side of my body and my left foot being two and a half sizes smaller than my right.  I wore eye patches to help correct my vision and heavy orthopedic shoes to straighten my spine, and endured grueling physical therapy sessions all throughout grade school to build up my “pipe cleaner” limbs. 

I kept this all a secret in order to join the United States Navy. In fact, I maintained the secret of my disability during my entire 20-year military career.  No one knew I had cerebral palsy as I served onboard battleships, destroyers and aircraft carriers.  I stood every watch, participated in every drill and fought every fire.  I performed at the highest levels and retired in 2002 as a Senior Chief Petty Officer – the second highest enlisted rank you can hold in the Navy.  It was an honor to serve my country.

I couldn’t meet the standard of fitness that the military needed from their recruits.  So what did I do?  I went home and started doing that duck walk exercise down in my basement. I did it every day for a year. Then, I went back and took the physical again.  I was the best duck walker in the building and passed with flying colors.  It took hard work, sweat, determination and a big lie, but I was finally able to gain inclusion into the Navy and have the career of my dreams. 

When I use the word “inclusion” in relation to the working world, many people believe that I’m asking for a lowering of a standard to fit a need.  Nothing could be further from the truth.  Inclusion to me is the opportunity to hit the same standard as anyone else.  Sadly, many people, especially those with disabilities, do not even get the chance to show what they can do.

Understanding Autism: Toward a More Inclusive World

Excerpt from: Autism Speaks (click for full article)

 

On the third and final day of the International Meeting for Autism Research (IMFAR), we had a special opportunity to reflect on the importance of holding this annual meeting outside North America for the first time in five years.

Our keynote speaker was Maureen Durkin, PhD, MPH, professor of population health and pediatrics at the University of Wisconsin-Madison. Dr. Durkin challenged us to move “toward a more inclusive world” by building on what we know about the epidemiology of autism spectrum disorder (ASD).

The goal of autism epidemiology is to discover what causes autism and why it’s more common today than ever before. This is crucial for guiding public health decisions and healthcare strategies.

Dr. Durkin’s message wasn’t your traditional IMFAR keynote speech. It wasn’t about how the latest findings pave a clear road for future research. It was about the challenges to autism epidemiology research and how the road ahead may not be “paved” at all. It may be full of wrong turns and stumbling blocks. That is, unless we take steps toward being more “inclusive.”

Inglewood theater group showcases actors with disabilities for Hollywood

Excerpt from: SCPR (click for full article)

 

Actors with developmental disabilities compete with non-disabled performers to get roles in Hollywood. But disabled actors often are typecast as handicapped characters. Performers enrolled in a theater group in Inglewood want to break out of that box. 

About 90 actors at Performing Arts Studio West are rehearsing more than a dozen pop and classic rock songs for their upcoming show called “Recovered: A Musical Journey.”    

The creative arts adult program they’re part of trains people who have disabilities, including  autism, Down syndrome, cerebral palsy and bipolar disorder.

“A lot of people said, ‘Oh, my God, you have a disability?'" said Nick Daley, 33, who has Prader-Willi Syndrome — a rare genetic disorder.

Upcoming Sibling Events

For more information, please see the flyer Download MISIBS Planning Meeting Flyer 5-14-13

See also Michigan Sibs

 

MISIBS exists to provide adult siblings of individuals with disabilities with the information, resources and support to advocate with and/or for their brothers and sisters and to promote leadership roles of siblings within the disability community.

Advocacy begins by being well informed about a situation that requires change. It also requires identifying people in power to effect change. Effective advocates are passionate in their belief that advocacy can be accomplished indirectly and directly on many levels with brothers and sisters. Each local sibling group can offer assistance with advocacy through local Arc chapters and can connect people to other siblings locally  who may be able to offer advice and assistance when necessary.

Video: Carly Fleischmann, non-verbal but communicating via computer

Excerpt from: Autism Support Network (click for full article)

 

 

Miracle Puppy Has Impact On Boy With Autism

Excerpt from: Disability Scoop (click for full article)

 

Just months after being left for dead, a dog is making a world of difference for a young boy with autism.

Last year, animal rescuers found an abused puppy on the side of a Georgia road, having nearly starved to death. They nursed her back to health, naming her Xena the Warrior Puppy. The amazing recovery won Xena fans worldwide on Facebook and her story helped raise tens of thousands of dollars for the care of abused animals.

But it may be Xena’s connection with her new owner that’s having the biggest impact. Now healthy, the dog was adopted by Jonny Hickey, who has autism, and his family. Once shy and withdrawn, Jonny’s family says Xena has brought him to life, inspiring him to make a video to promote April’s status as both Autism Awareness Month and Prevention of Cruelty to Animals Month.

“My name is Jonny,” the boy says in a video that aired on WXIA-TV, the Atlanta NBC affiliate, “and this is my puppy, Xena. Well, my Xena was hurt really bad. By some not-so-nice people. And I have autism. So I think we make a pretty perfect team to spread the word to be nice to animals, and nice to kids like me.”

My Son, Dyslexia, John Irving, and A Prayer for Owen Meany

Excerpt from: Patheos (click for full article)

 

My son is diagnosed, we know what word to call it. That’s a blessing. But I know that he’ll have struggles like Irving describes. I don’t ever want my kid to feel that way, but some of it is inevitable. I want him to know how smart he is. I want him to feel confident and to love reading as much as I do. But  no matter what we do, he’s going to feel some of this.

Irving’s novel A Prayer for Owen Meany is my all-time favorite book. I just finished reading it again, actually I listened to the audio book for the first time. It was interesting listening to it when I’ve read it so many times. My son will probably have to listen to many a book in order to read quickly. It was just this weird confluence of dyslexic themes.

If you’ve never read A Prayer for Owen Meany, stop what you are doing and go buy the book. If fact I think there’s a pdf of the book online, just start reading right now and buy it later. Or better yet, buy the audio book and experience it like a reader with dyslexia might.

Carolyn Hax: To do right by an ailing parent, you need to do right by yourself

Excerpt from: The Washington Post (click for full article)

 

Another key step: letting go of the idea that you bear sole responsibility for lifting your parents’ spirits. They are adults, they have chosen not to move closer to you, and so they deserve some respect for their autonomy. It’s not up to you to make their choices more palatable to them. An attachment to one’s doctors makes perfect sense to me, by the way.

Think of the near future as a phase where you allot X time daily, Y monthly to this crisis. Decide X and Y in cooperation with your husband — and interspersed with alone and couple time — to keep that crucial relationship fed. Such blunt thinking may seem odd now, but it will reward you later in preempted future regrets.

Art exhibit helps artists with disabilities

Excerpt from: WZZM 13 (click for full article)