When I think of the book, Reflections on a Different Journey, I wish that I had come up with the idea first. Stanley Klein, a clinical psychologist who works with children with disabilities, and John Kemp, attorney and advocate for the right of people with disabilities, asked people with disabilities to respond to the question, “what do you wish your parents knew when you were growing up?” Their desire was to have a book about raising children with disabilities by adults with disabilities rather than other parents or professionals. This collection of essays does that and so much more.
While the book is broken down into five sections, the book as a whole addresses life in a very complete way. If you are looking for strategies or techniques, you won’t find many. What you will find is encouragement for parents to love their children for who they are, be involved in their lives, and have high expectations for them in all areas of life. Pretty simple stuff, really, its things all parents are suppose to do. Yet for some parents, it seems from these personal, touching stories – the hardest lessons to learn are the least complicated.
Considering these stories, my parents did me well. They always believed in me. I always knew they loved me. The only area I wish they had done more was encouraging me to approach the opposite sex. Looking back, that was one area they never pushed me in. Maybe they just thought I’d have to figure it out. And I did, I am now married and we have a beautiful little boy. But I think it would have given me more self-confidence to try new things and be more open to new people in my high school years.
If I ever meet a parent who wants advice or a book on what to expect from their child this is the book I would think of first.
Monday, December 10, 2007
Tuesday, November 13, 2007
Favorite disability related books - part 1
There are a lot of books out there outlining disability history. I haven't read them all, but I have read one that has always stuck with me. No Pity was the first book on disability history that I ever read. It was part of my Independent Livng class in college. I am so thankful this book was part of it because it opened me to a larger movement that I have never been aware of. It made me aware of the ones that had gone before me to bring about the ADA and IDEA. It also made me think about where things were going, and were I am a part of it.
The book explains the orgins of the movement from Ed Roberts days at UC Berkley up until the passage of the ADA. In his easy to read style, John Shapiro explains what happened without coming off too biased on the side of the rights movement. I liked that he took a lot of perspectives in the movement - those with physical disabilities, the Deaf, learning disabilities, and many others. I gave my only copy away to my successor as President of Advocates for Disability Awarenss, and I miss it. Hopefully they read it and passed it on themselves. I would really like to reconnect with this book. No Pity will always be the first book to open my eyes to the larger disability rights movement that I took for granted.
The book explains the orgins of the movement from Ed Roberts days at UC Berkley up until the passage of the ADA. In his easy to read style, John Shapiro explains what happened without coming off too biased on the side of the rights movement. I liked that he took a lot of perspectives in the movement - those with physical disabilities, the Deaf, learning disabilities, and many others. I gave my only copy away to my successor as President of Advocates for Disability Awarenss, and I miss it. Hopefully they read it and passed it on themselves. I would really like to reconnect with this book. No Pity will always be the first book to open my eyes to the larger disability rights movement that I took for granted.
Monday, November 12, 2007
Thank you to our veterans
Since this day is Veterans Day, I want to send out my thanks to all of our veterans and current military. The sacrifice you have made for our country can never be repaid. Regardless of the situation, you answered our nation’s call for service with courage, honor, and bravery. I will always be thankful for what you did for us. Thank you for being there when we needed you.
Thursday, November 08, 2007
Disability Social Networking Site is Created
Every person with a disability has experienced having a person ask if we know of someone with a similar disability. Sometimes it feels like people assume we all get together and hang out. Like there is an annual disabled convention or something.
As ridiculous as the ideas sounds, a part of me wishes there was such a connectedness between us. Realistically, people with disabilities have a lots of have a lot of barriers to getting together, socializing and such. There's the lack of transportation. Communication The internet is one way that we can connect, share experiences, get advice, give support and be supported in our lives. The folks at Disaboom are trying to take these ideas.
Disaboom is a place were people with disabilities can share their thoughts through blogs, gather and share experiences in discussions, and read articles about living life with a disability. Some different things about this social networking site is that there is a place were members can post reviews of the accessibility of buisnesses, restarants, tourist attractions and the like. They also have a Career Center that is under some development, and can potentially have resumes posted, on-line interviews, and other great features.
Its a great site, and clearly a work in progress. It only started this past summer, so there is a lot of growth and developing going on. But the potential is so great, I'm glad to be a community member myself. Check it out, its worth your time!
As ridiculous as the ideas sounds, a part of me wishes there was such a connectedness between us. Realistically, people with disabilities have a lots of have a lot of barriers to getting together, socializing and such. There's the lack of transportation. Communication The internet is one way that we can connect, share experiences, get advice, give support and be supported in our lives. The folks at Disaboom are trying to take these ideas.
Disaboom is a place were people with disabilities can share their thoughts through blogs, gather and share experiences in discussions, and read articles about living life with a disability. Some different things about this social networking site is that there is a place were members can post reviews of the accessibility of buisnesses, restarants, tourist attractions and the like. They also have a Career Center that is under some development, and can potentially have resumes posted, on-line interviews, and other great features.
Its a great site, and clearly a work in progress. It only started this past summer, so there is a lot of growth and developing going on. But the potential is so great, I'm glad to be a community member myself. Check it out, its worth your time!
Tuesday, November 06, 2007
Autism Epidemic??
As a new parent, the statistics on autism are startling. I've sure you've seen the commercials of a mother strapping her kid into his car seat stating the chances of a child being in a wreck are 1 in 150,00 and having autism is 1 in 150. It makes me more aware as a parent of my child's behavior, looking out for tendencies in a 9 month old. I guess the ads’ mission is accomplished.
Maybe they did it too well.
The facts are clear as to the increasing numbers of children being diagnosed with autism. The rise is happening for a lot of reasons. One, the autism label is no longer the stereotypical "bangs head into walls" or "unable to relate to social situations”. Its a broad umbrella of labels. Another factor influencing the rise is that parents have found autism label provides children and adults with different services, and in some ways is more socially acceptable than other less "flattering" diagnoses like ADD. Some even say the heightened awareness makes parents and professionals interpret behaviors that are just temporary and part of that age as autism.
Whatever the reason, there is an increase, at the very least in awareness. What really gets under my skin is calling autism an epidemic. That’s a scary word to use. It brings to mind death, tragedy, and suffering. Something to keep those that I love away from. There is no denying the numbers are rising, but this is not the message I believe should be sent out.
I've always felt that disability is a function of our environment. And when our environment, our society, is looking to find a problem, it usually will. Some evidence suggests that this as been some of the case with the rise of autism. Rather than scaring ourselves or focusing on the negatives, we need to inform the public of the needs of people with autism. In my mind, that will change the environment in which people with autism live in and minimizes the effects of the condition. Statistics get our attention, but learning how we can make life better for others changes people’s hearts. The actions we take in fear to protect ourselves keep us from recognizing the solutions we can be a part of. Most folks see the stats, thank God their children are "normal" and go on with life, leaving parents, friends, and professionals and the person with autism responsible. If we don't reach to peoples hearts, show them how they can be involved in the solution, our environment will stay the same, and autism will always remain a disability.
Maybe they did it too well.
The facts are clear as to the increasing numbers of children being diagnosed with autism. The rise is happening for a lot of reasons. One, the autism label is no longer the stereotypical "bangs head into walls" or "unable to relate to social situations”. Its a broad umbrella of labels. Another factor influencing the rise is that parents have found autism label provides children and adults with different services, and in some ways is more socially acceptable than other less "flattering" diagnoses like ADD. Some even say the heightened awareness makes parents and professionals interpret behaviors that are just temporary and part of that age as autism.
Whatever the reason, there is an increase, at the very least in awareness. What really gets under my skin is calling autism an epidemic. That’s a scary word to use. It brings to mind death, tragedy, and suffering. Something to keep those that I love away from. There is no denying the numbers are rising, but this is not the message I believe should be sent out.
I've always felt that disability is a function of our environment. And when our environment, our society, is looking to find a problem, it usually will. Some evidence suggests that this as been some of the case with the rise of autism. Rather than scaring ourselves or focusing on the negatives, we need to inform the public of the needs of people with autism. In my mind, that will change the environment in which people with autism live in and minimizes the effects of the condition. Statistics get our attention, but learning how we can make life better for others changes people’s hearts. The actions we take in fear to protect ourselves keep us from recognizing the solutions we can be a part of. Most folks see the stats, thank God their children are "normal" and go on with life, leaving parents, friends, and professionals and the person with autism responsible. If we don't reach to peoples hearts, show them how they can be involved in the solution, our environment will stay the same, and autism will always remain a disability.
Monday, October 29, 2007
Disability hero recognized in movie
Heroes are hard to find these days. Or so it seems. Browsing through my Google News RSS for disability news, I found this story. Its one I've heard before, and it angers and inspires me each time I do.
An ordinary need for pancakes changed the life of Richard Pimentel. A Vietnam vet who was deaf from a bomb blast, Pimentel was out with his friend Arthur Honneymann, who has cerebral palsy at a diner when the waitress they leave. She said the sight of Honeymann was disturbing customers, citing "ugly laws" that allowed businesses to do this. They were eventually arrested, and this set Pimentel on his journey as an advocate for people with disabilities.
I won't go any further, the NY Post does a good job with the story. But I am excited to read that a movie has been made about that friendship, The Music Within". Its out to limited release, and I can't wait to at least see it on DVD.
http://www.nypost.com/seven/10292007/jobs/the_warrior.htm
An ordinary need for pancakes changed the life of Richard Pimentel. A Vietnam vet who was deaf from a bomb blast, Pimentel was out with his friend Arthur Honneymann, who has cerebral palsy at a diner when the waitress they leave. She said the sight of Honeymann was disturbing customers, citing "ugly laws" that allowed businesses to do this. They were eventually arrested, and this set Pimentel on his journey as an advocate for people with disabilities.
I won't go any further, the NY Post does a good job with the story. But I am excited to read that a movie has been made about that friendship, The Music Within". Its out to limited release, and I can't wait to at least see it on DVD.
http://www.nypost.com/seven/10292007/jobs/the_warrior.htm
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