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

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)

 

 

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.

Art exhibit helps artists with disabilities

Excerpt from: WZZM 13 (click for full article)

 

 

Is Your Child's IEP Really Individualized?

Excerpt from: Wrightslaw (click for full article)

 

What's the "I" in IEP? IEPs must be Individualized to the unique needs of each child with a disability. That means your child's IEP should be tailored to his specific needs.

In this issue of the Special Ed Advocate, you will get an IEP checklist to help you make sure your child's education plan is individualized. Learn what specific information IDEA requires in the IEP.

Heart of Autism: Making Other Kids Feel Proud

Excerpt from: Autism Speaks (click for full article)

 

Lucas has always been very creative and loved projects. When the idea came up to have Lucas help create his own lap pad, it didn't take much convincing! We went and spoke with his occupational therapist who thought it was a great idea too! So with the help of my mother, we took a trip to the fabric store and picked out fabric. After a few failed attempts, he created a weighted lap pad by explaining what he liked and what he needed. After we finished his new lap pad, he brought it to school and had so many more successful days because he was using the device! The director in his classroom asked us where he got it and he proudly interrupted and declared he created it. She looked at me and then at him and I explained how we made it.

Since then we have designed and made custom weighted shoulder snakes, lap pads, wiggle seats, fidget toys, etc. all of which are based on the designs of my 9-year-old autistic son. We have shipped products to everywhere from New Hampshire to Washington state. Ultimately, our goal is to be able to provide products to children that might not have been able to find these or afford them otherwise. We donate these products whenever we can to help other kids like Lucas. But most importantly, this project has given my son a voice. He is no longer ashamed and he has learned to be proud of who he is! Lucas’ goal is to help other kids like himself, so they are no longer embarrassed by the tools that help them succeed!

Congress' Drafting Error Denies Individuals with Disabilities a Fundamental Right

Excerpt from: NAELA (click for full article)

 

Denying a Basic Right
Aside from the mistaken presumption that such individuals lack capacity to establish their own SNT, this omission results in inequitable and unnecessary legal costs and time for the individual with disabilities. Imagine the impact on a person who does not have the luxury of a living parent or grandparent and does not lack mental capacity that requires the appointment of a legal guardian. That person’s sole option is to hire a lawyer to petition the court to exercise a fundamental right that the person is born with in our country. Depending on one’s geographic location, this cost could range from $1,500 to more than $6,000.

This dilemma was recently experienced by a 62-year-old client of mine who was the victim of medical malpractice, which rendered her paralyzed and confined to a nursing home that charges over $100,000 per year for her care. She not only has the mental capacity to direct her care in the facility, but she also was the star witness in her lawsuit, testifying in court as to her ordeal. When it came time to set up her SNT, I had to inform her that she could not simply sign the SNT, but instead, since she did not have a parent, grandparent, or legal guardian, she had to petition the court to authorize it. My words cannot convey the shock on her face. My words also cannot convey the shock on the faces of the legislative assistants in Congress when I informed them that I, a blind and moderately deaf attorney who has drafted thousands of SNTs for clients, would not even be able to sign my own SNT in the future.