- enforce the ADA and Olmstead Act (secure funding)
- demand better enforcement of public transportation services
- close down the nursing homes, except for those who wish to be there
- improve the wage of personal assistant services and the quality of care received by the clients
- find more accessible affordable housing
- enforce the Air Carrier Act
- give all healthcare services free to low-income people and people with disabilities
- start small businesses or customized employment and improve higher education
- provide more public education for those who need it
- make disability studies a major in all universities, public and private
- better train people on assistive technology and devices
- teach people how to navigate through the benefits system
- have action teams set up to deal with any situation for persons with disabilities
- more community involvement and more sensitivity training
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Thursday, December 16, 2010
Our Perpetual Responsibilities of Advocates with Disabilities
We have to find a way over the coming years to:
Thursday, September 3, 2009
Tuesday, June 30, 2009
New writing I would love feedback
One of “those kind of guys.”
As I sit down to write this, I do so with a bit of apprehension. I am not one who likes to look at my own thoughts, but in its own right, over time, I have heard that the process is healing, and opens up a lot of both emotions and opportunities.
Day to day activities become so routine. My true passion has always been to help people through communication and understanding. Going back to my earliest memories, I was always an advocate, and always will be. The advocacy from my memory started on a beach trip I had with my mother. I was beginning to question at age 5 why I was different from the rest of them. I asked, “Mom, why did I come out early?”
She didn’t have time to respond before I blurted out, “I know, I wanted to see the world earlier than anyone else!” Mom then said, “What did you say?” From that moment on, I realized that my disability would always be a part of my life.
Mom and Dad put me through a lot of intense therapy to get their son to “walk.” Well, walking is one thing, but when it is like moving down St. Helens, it turns into a difficult, time consuming process. This went along with hours of other types of various therapies (physical, occupational, recreational, speech, bio feedback, Feldenkrais, functional electrical stimulation, [not electroshock therapy] etc. ) I also spent Kindergarten through 2nd grade in special education.
Special education in 1979 and 1980 was held in the back of a trailer behind where the “normal” kids went to school. I remember the long folding tables with cassette players and big head phones. I remember listening to ABCs and numbers in Spanish and English over and over again. To get me to use a computer, a round disc pressure switch was placed behind my head and a light board would scan through letters, numbers, etc. and I would have to push the button to make the light light up. In the future, this would lead to word prediction technology. World renowned scientist Steven Hawking has been using this technology since I started in 1980. Not only did I learn this technology very quickly, but the special ed administration was tricky, and decided to have me teach my friend who could not communicate, to use the same method to operate a communication device. My friend and I would always ride home on the bus together as our wheelchairs clanked, because of the number of wheelchairs on the bus, and the sheer weight of all those wheelchairs. The rest of special ed daytime activity included being pulled out of class at least 3 times a day for different forms of therapy. I also spent a lot of time in the time out room. They like to put you in there when you make too much noise, or are too disruptive. All of my wailing and growing pains must have been starting, because I spent more time out room than I care to remember.
Luckily, my parents realized very quickly that I wasn’t learning too much in special ed, and at around that time, my dad got a job transferred back to the east coast, where I spent the next 2 years at a Montessori school where I was the only person with a disability. Then it was back to California again, and I was about ready to enter the 4th grade. Mom and Dad had a rule: don’t ever treat Nicky any different from any other kids. This is when I met my best friend, Curtis Miller. My mom and dad paid for an assistant to go to school with me, because the private school did not legally have to pay for anything. Phil was a gentle, strong, tall, energetic, loving individual who happened to be working as a janitor at the school. At the request of the principal, Phil was introduced to my mother, and we were told to go outside and play. We played cops and robbers. Did I mention that Phil was African American, and this was probably not politically correct, and it probably offended Phil a little? Phil was the greatest. He would play football with me and take me out of the wheelchair and run with me and the ball. We would play capture the flag, and whenever someone would capture his flag or mine, we would both go stumbling on the ground, even in the Baltimore snow, and because Curtis was my best friend, I would always try to tackle him. Phil got down on the ground with me, and joined our imaginary rock club, where we would dig in the ground, looking for imaginary precious rocks. After these 2 years, I really had some knowledge under my belt as far as kids go. I knew the realities of not being able to go over to people’s houses, because they were not accessible. I knew that Curtis’ parents and a few other parents really cared for me. I didn’t realize this until many years later, but when they had me over to spend the night, their parents had to take care of me. I know that because of my cerebral palsy (CP), I was not your typical sleep over.
Junior High and high school were very difficult years for me. They represented my social influx into the world of people who don’t like looking at wheelchairs, more or less having to talk to them. Making friends was always more challenging, because of the intense fear that I had, not around socialization, but the real world “no’s” and the letdowns. I was a late bloomer, and I think I only dated once in high school. I went to someone else’s prom, but not my own. I knew a lot of people, and a lot of people knew me. We were more acquaintances. Then, in 1993, I became Jr. class president, and received the high school volunteer award.
My high school graduation was probably a lot more meaningful to me than my college graduation. I got to speak around my whole 3000 student body about how I had learned so much from peer counseling, and how to talk to other people.
Even back then, I was an advocate. In high school, I remember getting trapped in an elevator after a play. My mom and I had already given numerous warnings that the elevator was going to break, so I did the unthinkable: I got stuck halfway up, between floors, and I had to call the fire department. I was so angry, that I spent the next 3 hours banging my head against the pressure switch, writing a letter to the school paper about the injustice, and embarrassment of the whole experience. My letter was in the paper, and I was on the front page.
Shortly after seeing a documentary about Ed Roberts, and the Rolling Quads, I decided I wanted to get my degree from UC Berkeley and had no idea how my life would change. I hope that this book begins to explain the nuances that go along with growing up, activism, school, and all of life’s other quirks. I dedicate this book to the power of activism, and the rights of all people. Because of my own disability, I relate very well to the disability rights movement, and that is where I focus a majority of my advocacy. I would like to thank my parents for being the ultimate advocates, and for the people whom I have met over the years who taught me about self advocacy, and how to advocate for others.
As I sit down to write this, I do so with a bit of apprehension. I am not one who likes to look at my own thoughts, but in its own right, over time, I have heard that the process is healing, and opens up a lot of both emotions and opportunities.
Day to day activities become so routine. My true passion has always been to help people through communication and understanding. Going back to my earliest memories, I was always an advocate, and always will be. The advocacy from my memory started on a beach trip I had with my mother. I was beginning to question at age 5 why I was different from the rest of them. I asked, “Mom, why did I come out early?”
She didn’t have time to respond before I blurted out, “I know, I wanted to see the world earlier than anyone else!” Mom then said, “What did you say?” From that moment on, I realized that my disability would always be a part of my life.
Mom and Dad put me through a lot of intense therapy to get their son to “walk.” Well, walking is one thing, but when it is like moving down St. Helens, it turns into a difficult, time consuming process. This went along with hours of other types of various therapies (physical, occupational, recreational, speech, bio feedback, Feldenkrais, functional electrical stimulation, [not electroshock therapy] etc. ) I also spent Kindergarten through 2nd grade in special education.
Special education in 1979 and 1980 was held in the back of a trailer behind where the “normal” kids went to school. I remember the long folding tables with cassette players and big head phones. I remember listening to ABCs and numbers in Spanish and English over and over again. To get me to use a computer, a round disc pressure switch was placed behind my head and a light board would scan through letters, numbers, etc. and I would have to push the button to make the light light up. In the future, this would lead to word prediction technology. World renowned scientist Steven Hawking has been using this technology since I started in 1980. Not only did I learn this technology very quickly, but the special ed administration was tricky, and decided to have me teach my friend who could not communicate, to use the same method to operate a communication device. My friend and I would always ride home on the bus together as our wheelchairs clanked, because of the number of wheelchairs on the bus, and the sheer weight of all those wheelchairs. The rest of special ed daytime activity included being pulled out of class at least 3 times a day for different forms of therapy. I also spent a lot of time in the time out room. They like to put you in there when you make too much noise, or are too disruptive. All of my wailing and growing pains must have been starting, because I spent more time out room than I care to remember.
Luckily, my parents realized very quickly that I wasn’t learning too much in special ed, and at around that time, my dad got a job transferred back to the east coast, where I spent the next 2 years at a Montessori school where I was the only person with a disability. Then it was back to California again, and I was about ready to enter the 4th grade. Mom and Dad had a rule: don’t ever treat Nicky any different from any other kids. This is when I met my best friend, Curtis Miller. My mom and dad paid for an assistant to go to school with me, because the private school did not legally have to pay for anything. Phil was a gentle, strong, tall, energetic, loving individual who happened to be working as a janitor at the school. At the request of the principal, Phil was introduced to my mother, and we were told to go outside and play. We played cops and robbers. Did I mention that Phil was African American, and this was probably not politically correct, and it probably offended Phil a little? Phil was the greatest. He would play football with me and take me out of the wheelchair and run with me and the ball. We would play capture the flag, and whenever someone would capture his flag or mine, we would both go stumbling on the ground, even in the Baltimore snow, and because Curtis was my best friend, I would always try to tackle him. Phil got down on the ground with me, and joined our imaginary rock club, where we would dig in the ground, looking for imaginary precious rocks. After these 2 years, I really had some knowledge under my belt as far as kids go. I knew the realities of not being able to go over to people’s houses, because they were not accessible. I knew that Curtis’ parents and a few other parents really cared for me. I didn’t realize this until many years later, but when they had me over to spend the night, their parents had to take care of me. I know that because of my cerebral palsy (CP), I was not your typical sleep over.
Junior High and high school were very difficult years for me. They represented my social influx into the world of people who don’t like looking at wheelchairs, more or less having to talk to them. Making friends was always more challenging, because of the intense fear that I had, not around socialization, but the real world “no’s” and the letdowns. I was a late bloomer, and I think I only dated once in high school. I went to someone else’s prom, but not my own. I knew a lot of people, and a lot of people knew me. We were more acquaintances. Then, in 1993, I became Jr. class president, and received the high school volunteer award.
My high school graduation was probably a lot more meaningful to me than my college graduation. I got to speak around my whole 3000 student body about how I had learned so much from peer counseling, and how to talk to other people.
Even back then, I was an advocate. In high school, I remember getting trapped in an elevator after a play. My mom and I had already given numerous warnings that the elevator was going to break, so I did the unthinkable: I got stuck halfway up, between floors, and I had to call the fire department. I was so angry, that I spent the next 3 hours banging my head against the pressure switch, writing a letter to the school paper about the injustice, and embarrassment of the whole experience. My letter was in the paper, and I was on the front page.
Shortly after seeing a documentary about Ed Roberts, and the Rolling Quads, I decided I wanted to get my degree from UC Berkeley and had no idea how my life would change. I hope that this book begins to explain the nuances that go along with growing up, activism, school, and all of life’s other quirks. I dedicate this book to the power of activism, and the rights of all people. Because of my own disability, I relate very well to the disability rights movement, and that is where I focus a majority of my advocacy. I would like to thank my parents for being the ultimate advocates, and for the people whom I have met over the years who taught me about self advocacy, and how to advocate for others.
Wednesday, June 10, 2009
Olmstead Anniversary
Olmstead's Anniversary and Disability Civil Rights.
Information Bulletin #287 (6/09).
June 22, 2009, marks the 10th anniversary of the Supreme Court's Olmstead ruling for disability civil rights. Some people have made an analogy between the Olmstead decision and the Brown v. Board of Education decision in 1954. Let's compare them.
Nearly ten years after the black civil rights movement's victory in Brown, incremental, albeit not overwhelming, progress had occurred. Nonetheless, some people thought the black civil rights struggle had stalled.
Nearly ten years after the disability civil rights movement's victory in the Olmstead decision, incremental progress has occurred as well.
But still, more than 313,000 people with disabilities in nursing homes (23% of the total) want to live in the community, and yet are denied their civil right to integration, primarily because of Medicaid's historical bias in favor of segregation. Many of them are on "waiting lists" for their civil rights. Can you imagine a "waiting list" for black civil rights?
While the black civil rights movement achieved its share of victories, it took the March on Washington for Congress to enact both the Civil Rights Act of 1964 and the Voting Rights Act of 1965. And even then, it took the U.S. Department of Justice to take the right actions and really enforce these civil rights.
Remember that Title VI of the 1964 Civil Rights Act prohibited federal subsidies for racially segregated institutions.
So why not similarly rectify segregation for people with disabilities? Does not the Olmstead decision, together with the ADA/Section 504, already provide the necessary handles to prohibit federal subsidies to States that limit services only to segregated institutions, thus denying real choices that would enable 313,000 people to reside in the community.
Some say the disability civil rights issue of ending unnecessary segregation must wait. But as Dr. King wrote, "For years now I have heard the word 'Wait.' It rings in the ear of every Negro [person with a disability who is unnecessarily institutionalized] with piercing familiarity. This 'Wait' has almost always meant 'Never'."
Last year when some disability advocates wanted an explicit reference to ending unnecessary segregation included in the ADA Restoration Act, they were politely told that other issues were the focus: "wait."
This year when people with disabilities with the lowest incomes, who are entirely dependent on Medicaid, have demanded to end unnecessary segregation by having the Community Choice Act included in any health reform legislation, they have been told that the CCA is not the focus of health reformb"Wait."
The "Wait" to end unnecessary segregation of people with disabilities in institutions may soon turn into a "Never" for civil rights.
How hard is it to understand and accept that, but for the denial of civil rights, many institutionalized people with disabilities would live in the community with adequate programs and supports, especially since its cheaper for the federal government and states to provide such programs and supports in the community?
How hard would it be to enact a Disability Civil Rights Act in 2009 to end unnecessary segregation just as Congress did with the Civil Rights Acts in the 1960s? A Disability Civil Rights Act in 2009 to end segregation could not be as inflammatory as enacting the Voting Rights Act of 1964.
Will U.S. Attorney General Holder look to how U.S. Attorney General Robert Kennedy addressed ending discrimination in the 1960s? General Holder could start by looking at the 313,000 people with disabilities living in nursing facilities who have said they do not want to be unnecessarily institutionalized. He could inform states that Olmstead and the ADA/504 require providing real choice for people with disabilities who are segregated and want to live in the community.
What do we have to do to create the atmosphere of the 1960s for the disability civil rights struggle in 2009?
Steve Gold, The Disability Odyssey continues
Information Bulletin #287 (6/09).
June 22, 2009, marks the 10th anniversary of the Supreme Court's Olmstead ruling for disability civil rights. Some people have made an analogy between the Olmstead decision and the Brown v. Board of Education decision in 1954. Let's compare them.
Nearly ten years after the black civil rights movement's victory in Brown, incremental, albeit not overwhelming, progress had occurred. Nonetheless, some people thought the black civil rights struggle had stalled.
Nearly ten years after the disability civil rights movement's victory in the Olmstead decision, incremental progress has occurred as well.
But still, more than 313,000 people with disabilities in nursing homes (23% of the total) want to live in the community, and yet are denied their civil right to integration, primarily because of Medicaid's historical bias in favor of segregation. Many of them are on "waiting lists" for their civil rights. Can you imagine a "waiting list" for black civil rights?
While the black civil rights movement achieved its share of victories, it took the March on Washington for Congress to enact both the Civil Rights Act of 1964 and the Voting Rights Act of 1965. And even then, it took the U.S. Department of Justice to take the right actions and really enforce these civil rights.
Remember that Title VI of the 1964 Civil Rights Act prohibited federal subsidies for racially segregated institutions.
So why not similarly rectify segregation for people with disabilities? Does not the Olmstead decision, together with the ADA/Section 504, already provide the necessary handles to prohibit federal subsidies to States that limit services only to segregated institutions, thus denying real choices that would enable 313,000 people to reside in the community.
Some say the disability civil rights issue of ending unnecessary segregation must wait. But as Dr. King wrote, "For years now I have heard the word 'Wait.' It rings in the ear of every Negro [person with a disability who is unnecessarily institutionalized] with piercing familiarity. This 'Wait' has almost always meant 'Never'."
Last year when some disability advocates wanted an explicit reference to ending unnecessary segregation included in the ADA Restoration Act, they were politely told that other issues were the focus: "wait."
This year when people with disabilities with the lowest incomes, who are entirely dependent on Medicaid, have demanded to end unnecessary segregation by having the Community Choice Act included in any health reform legislation, they have been told that the CCA is not the focus of health reformb"Wait."
The "Wait" to end unnecessary segregation of people with disabilities in institutions may soon turn into a "Never" for civil rights.
How hard is it to understand and accept that, but for the denial of civil rights, many institutionalized people with disabilities would live in the community with adequate programs and supports, especially since its cheaper for the federal government and states to provide such programs and supports in the community?
How hard would it be to enact a Disability Civil Rights Act in 2009 to end unnecessary segregation just as Congress did with the Civil Rights Acts in the 1960s? A Disability Civil Rights Act in 2009 to end segregation could not be as inflammatory as enacting the Voting Rights Act of 1964.
Will U.S. Attorney General Holder look to how U.S. Attorney General Robert Kennedy addressed ending discrimination in the 1960s? General Holder could start by looking at the 313,000 people with disabilities living in nursing facilities who have said they do not want to be unnecessarily institutionalized. He could inform states that Olmstead and the ADA/504 require providing real choice for people with disabilities who are segregated and want to live in the community.
What do we have to do to create the atmosphere of the 1960s for the disability civil rights struggle in 2009?
Steve Gold, The Disability Odyssey continues
Thursday, May 28, 2009
Monday, April 20, 2009
Poem: Like Me
There's a new kid who's come to my school.
He's different from me and he isn't too cool.
No, he's nothing at all like me, like me,
No, he's nothing at all like me.
He runs in a funnyish jerkyish way
And he never comes first in a race
Sometimes he forgets which way is first base,
And he's nothing at all like me, like me,
No, he's nothing at all like me.
He studies all day in a separate class
And they say that it's called "Special Ed."
And sometimes I don't understand what he's said,
And he's nothing at all like me, like me,
No, he's nothing at all like me.
His face looks kind of different from mine,
And his talking is sometimes so slow
And it makes me feel funny and there's one thing I know;
He is nothing at all like me, like me,
No, he's nothing at all like me!
And my father said, "Son, I want you to think
When you meet some one different and new
That he may seem a little bit strange, it's true,
But he's not very different from you, from you,
No, he's not very different from you,"
Well I guess, I admitted, I've looked at his face;
When he's left out of games, he feels bad.
And when other kids tease him, I can see he's so sad.
I guess that's not so different from me, from me,
No, that's not very different from me.
And when we're in Music, he sure loves to sing,
And he sings just like me, right out loud.
When he gets his report card, I can tell he feels proud,
And that's not very different from me, from me,
No, that's not very different from me.
And I know in the lunchroom he has lots of fun;
He loves hot dogs and ice cream and fries.
And he hates to eat spinach and that's not a surprise,
'Cause that's not very different from me, from me,
No, that's not very different from me.
And he's always so friendly, he always says hi,
And he waves and he calls out my name.
And he'd like to be friends and get into a game,
Which is not very different from me, from me,
No, I guess that's not different from me.
And his folks really love him. I saw them at school,
I remember on Open School Night --
They were smiling and proud and they hugged him real tight,
And that's not very different from me, from me,
No, that's not very different from me.
So I said to my dad, Hey, you know that new kid?
well, I've really been thinking a lot.
Some things are different . . . and some things are not . . .
But mostly he's really like me, like me,
Yes, my new friend's . . . a lot . . . like me.
© Emily Perl Kingsley
Sunday, March 22, 2009
Dare to Dream Attendant Services update
Hi,
I hope all of you are well. Dare to Dream has a great staff of people and a great client base. As you know, California is up against very hard times as an employer and as an employee. Tax rates and the cost of living going up along with budget cuts to regional centers that my company has business with makes it very difficult for a small business to survive. I am looking forward to meeting with you as soon as possible to discuss any and all possibilities on ways we can help each other accomplish our goals. I know most are too pressed for money and time, so if nothing else works I am extremely interested in setting up an advisory board that would help steer Dare to Dream Attendant Services in a way that will continue to provide quality home care when needed most. Whether I have spoken to you in the past few days, or whether I have never spoken to you at all, my assistant Andrew Snook and myself would like to come to your area and discuss possible collaborations and strategies to keep Dare to Dream prosperous, while at the same time providing quality home care when people need it most.
Talk to you soon,
Nicholas Feldman
Owner/Founder of Dare to Dream Attendant Services
Nicholas Feldman
Dare to Dream Attendant Services, LLC
2488 Martin Luther King Jr. Way
Berkeley, CA 94704
(800)988-9927
Fax: (415)541-8590
website: www.daretodreamattendantservices.com
blog: http://mydreamweaver.blogspot.com/
(Assistant may answer the phone)
I hope all of you are well. Dare to Dream has a great staff of people and a great client base. As you know, California is up against very hard times as an employer and as an employee. Tax rates and the cost of living going up along with budget cuts to regional centers that my company has business with makes it very difficult for a small business to survive. I am looking forward to meeting with you as soon as possible to discuss any and all possibilities on ways we can help each other accomplish our goals. I know most are too pressed for money and time, so if nothing else works I am extremely interested in setting up an advisory board that would help steer Dare to Dream Attendant Services in a way that will continue to provide quality home care when needed most. Whether I have spoken to you in the past few days, or whether I have never spoken to you at all, my assistant Andrew Snook and myself would like to come to your area and discuss possible collaborations and strategies to keep Dare to Dream prosperous, while at the same time providing quality home care when people need it most.
Talk to you soon,
Nicholas Feldman
Owner/Founder of Dare to Dream Attendant Services
Nicholas Feldman
Dare to Dream Attendant Services, LLC
2488 Martin Luther King Jr. Way
Berkeley, CA 94704
(800)988-9927
Fax: (415)541-8590
website: www.daretodreamattendantservices.com
blog: http://mydreamweaver.blogspot.com/
(Assistant may answer the phone)
Tuesday, February 3, 2009
Understanding these times
These times are really hard. When you have to comprehend a 3% reduction in your profits for your business, and at the same time lose your health insurance plan, well....you begin to understand what really hard times means. It means we either have to roll with the punches or all of us (that means everyone!) take a stand one way or another. What I mean by this is do we take the status quo, where all the systems around us fail, and we are left without a penny in our pocket, or a job that will make us successful, or do we come together as a society and hold our representatives accountable for everything that they have promised us. We are supposed to be California...the defining icon of the west coast, but we as a society are complacent. I recently saw an old aquainence who was complaining about all the cuts and the proposed budget cuts. I knew in my head that he was feeling the hard times too, but then he wouldn't really do anything. He wouldnt go the extra mile and take a stand. We need to chain ourselves in front of the capital and say that minorities may not be ignored and that the budget cuts will not fall on our shouldrers. If someone calls me tomorrow and says, "Nick, Im ready to go down to Sacramento and get arrested for protecting our rights" I will be on the next train to Sac. For those of you who read this, and for those of you who don't, this is the worst time in the states history. This is the longest we've ever gone without passing a budget. It's not just happening at a local level, our friend Tom Dashal, who has always stood up for PWD and minorities, he was ousted from the Obama Administration by the good-o-IRS. 120,000 to 3,000 is nothing to a person who makes so much money. This was a publicity blitz that made the Republicans use their influence with the popular media to overplay something that was just a mere mistake. It could have happened to any one of us. So I ask you to engage with me on a trip to the capital to regain our rights. Yes, you can email me at daretodream94704@yahoo.com and I will happily join you in our fight to save our state from people really dying, and people going broke, because our government doesn't have a clue. Staying alive....
Nick
Nick
Monday, December 29, 2008
Activism in Russia
Please help this young woman with CP get out of a Russian mental institution!
-----------------------------------------------------------------------------
Russian disability activists acting on behalf of Katya Timochkina, an
18 year old child with cerebral palsy, are requesting that people
write the governor of Samara Region in Russia and let her leave a
psychiatric institution, where she is being kept against her will.
Katya has no psychiatric disabilities and has expressed a wish to get
an education (she has never received an education) and have a
successful career as a psychologist.
You can learn more about Katya at the English language blog, In
Solidarity with Katya Timochkina (http://katyat.wordpress.com). The
blog includes a link to a Russian-language interview on Youtube with
translation into English.
The simplest and most effective way of helping Katya is to write a
postal letter to the governor. Russian officials are required by law
to respond to each piece of written correspondence. Even a short,
carefully-written, personal letter on why Katya's fate is important
to you- without assuming a preachy or accusatory tone- would be very
powerful.
These letters are especially important now because in Russia's
current political climate it is increasingly difficult for community
activists, including disability activists, to operate. A regional
minister in Samara lodged a complaint to Russia's human rights
ombudsman that certain disability activists were expressing undue
interest in the fate of Katya! These very activists also happen to
serve on a government commission on inclusive education for children
with disabilities!
The governor's address is:
Vladimir Vladimirovich Artyakov, the Governor of Samara Region.
His address is:
Russia 443006,
Samara,
Molodogvardeiskaya Ulitsa, 210.
Postal letters with the sender's address and a request for a reply
bind the Governor to respond.
While an email does not require the governor to respond, it also
generate attention. Email the governor at governor@samara.ru
Katya's case has been covered several time in Izvestiya, one of the
top three newspapers in Russia and covered on national TV there. She
has the potential of becoming a symbol of Russian children with
disabilities who seek to live fulfilling lives of dignity, where they
can offer their gifts to the world and make a positive contribution.
-------------------------------------------------------------------
To whom it may concern,
I have heard about the plight of Katya Timochkina, the 18 year old with Cerebral Palsy who lives in your country. Because of her intelligence and her successful education, I ask that she be allowed human rights to be able to leave the mental institution where she currently lives.
People with disabilities can lead very successful lives outside of an institutional environment. I have Cerebral Palsy myself, and am college educated, and living with assistance in my own apartment. I have friends, own a company, and am even even engaged to be married.
Once again, I urge you to let Katya Timochkina leave to pursue a life of successful community integration. Life outside of an institution can be daunting without supports, but if she is given the support that she needs to live a life of her own, I am confident that she will be a productive member of Russian society.
I thank you for your time. Sincerely,
Nick Feldman
-------------------------------------------------------------------
All responses are welcome! Show the world that people with disabilities can lead very productive lives outside of the institutional environment.
-----------------------------------------------------------------------------
Russian disability activists acting on behalf of Katya Timochkina, an
18 year old child with cerebral palsy, are requesting that people
write the governor of Samara Region in Russia and let her leave a
psychiatric institution, where she is being kept against her will.
Katya has no psychiatric disabilities and has expressed a wish to get
an education (she has never received an education) and have a
successful career as a psychologist.
You can learn more about Katya at the English language blog, In
Solidarity with Katya Timochkina (http://katyat.wordpress.com). The
blog includes a link to a Russian-language interview on Youtube with
translation into English.
The simplest and most effective way of helping Katya is to write a
postal letter to the governor. Russian officials are required by law
to respond to each piece of written correspondence. Even a short,
carefully-written, personal letter on why Katya's fate is important
to you- without assuming a preachy or accusatory tone- would be very
powerful.
These letters are especially important now because in Russia's
current political climate it is increasingly difficult for community
activists, including disability activists, to operate. A regional
minister in Samara lodged a complaint to Russia's human rights
ombudsman that certain disability activists were expressing undue
interest in the fate of Katya! These very activists also happen to
serve on a government commission on inclusive education for children
with disabilities!
The governor's address is:
Vladimir Vladimirovich Artyakov, the Governor of Samara Region.
His address is:
Russia 443006,
Samara,
Molodogvardeiskaya Ulitsa, 210.
Postal letters with the sender's address and a request for a reply
bind the Governor to respond.
While an email does not require the governor to respond, it also
generate attention. Email the governor at governor@samara.ru
Katya's case has been covered several time in Izvestiya, one of the
top three newspapers in Russia and covered on national TV there. She
has the potential of becoming a symbol of Russian children with
disabilities who seek to live fulfilling lives of dignity, where they
can offer their gifts to the world and make a positive contribution.
-------------------------------------------------------------------
To whom it may concern,
I have heard about the plight of Katya Timochkina, the 18 year old with Cerebral Palsy who lives in your country. Because of her intelligence and her successful education, I ask that she be allowed human rights to be able to leave the mental institution where she currently lives.
People with disabilities can lead very successful lives outside of an institutional environment. I have Cerebral Palsy myself, and am college educated, and living with assistance in my own apartment. I have friends, own a company, and am even even engaged to be married.
Once again, I urge you to let Katya Timochkina leave to pursue a life of successful community integration. Life outside of an institution can be daunting without supports, but if she is given the support that she needs to live a life of her own, I am confident that she will be a productive member of Russian society.
I thank you for your time. Sincerely,
Nick Feldman
-------------------------------------------------------------------
All responses are welcome! Show the world that people with disabilities can lead very productive lives outside of the institutional environment.
Thursday, August 28, 2008
Omg, Gimps Gone Wild!
I have been a very big critic of not talking about people with disabilities and sex, and when reading my discussion groups, this came up, and it was not only erotic, but it was educational as well. Those gimps do it too, lol. I know this is a pretty risque topic, and keep the kids away, but we all have to understand that sexuality is a normal part of life for all of us, able or disabled, young or old, and yes, to answer your question in advance, I think this site is hot! It's really here hot here in California, anyway. My own two cents on the subject is that all teachers and medical professionals as well as others who work in the field need to understand that sex and disability has to be creative, and sometimes assistive devices, and even PCAs are necessary. To deny anyone this right is just wrong. We don't teach about birth control, abstinence, or even sex education to most special ed kids, so they always wonder, and we all know that they get that feeling one day, and I think about my friend, who I'll call Bob. Bob grew up, and would see people kissing, holding hands, hugging, and even at times, touching each other. Instead of Bob having the satisfaction of feeling this way himself, he always went without. He would always say things like, "what is it like to have a girlfriend," "does sex hurt?" It's questions like these that haunt me about the subject. We must educate, even the ones who feel uncomfortable, because it's like a shot in the arm: once you get it, it's not uncomfortable anymore. It's not porn, it's natural. And Bob went to his grave never having sex, or a relationship.
----------------------------------------------------------------------------
I hear ya Kimi {thumbsup}
Easy access lingerie is a great invention [smile].
There are perks to dating DA that just don't happen as smoothly with
an AB.
An example- If you're both disabled you get a lot more quality time
that dosen't happen if an AB partner has to finish chores a PCA
didn't finish {when the PCA couldn't show up, etc}.
When I was with a DA guy we never had any problems with the chore
load issue because we'd both have the same amount of time and focus
to give to each other while the chores were left until a PCA could
get to work again.
There was more understanding and being on the same page when it came
to both of us being disabled.
DA realationships are very far from 'settling' as some ignorant types
believe. Double DA can work way better than
who bennefit from the experience and dating DA is not scrapping the
bottom of the barrel at all or 'taking what we can find' leftover
second class quality.
Does this make me a
--- In independentliving@yahoogroups.
>
> Eric and I did not need any where near as much help as Jen and Doug
do, but
> we did need help undressing, transferring, setting up and cleaning
up. My
> PCA would get me dressed in lingerie that I could move or take off
myself
> before putting me in bed. Since
dependent on the
> vent a nurse/PCA had to be in the other room. It wasn't the only
reason, but
> that was 1 reason I usually always wore lingerie. Yeah, it sucked
that we had
> little privacy and it wasn't easy getting used to people coming in
and out of
> the bedroom when we needed something. But we had a great sex
life. It was
> actually the best sex life I ever had w/a guy, even AB guys. Yes,
there was
> less spontaneity, but in the end we had a much more active sex
life than our
> AB friends. We were also lucky to have PCA's who were comfortable
w/the
> situation. You are right
when you are in
> love w/someone who happens to be severely DA also? You do what
you gotta do.
> I never thought in a million years I'd get engaged to a DA guy.
One thing
> I liked about dating
when he gave
> me compliments about being beautiful and sexy b/c his body was not
the
> societal norm either. He helped my self confidence and body image
immensely.
>
> Kimi
>
> }i{
> Visit my myspace page and blogs: _ www.myspace.com/ksmile96_
> (http://www.myspace.com/
>
> "We come to love not by finding a perfect person but by learning
to see an
> imperfect person perfectly" - San Keen
>
>
> In a message dated 8/24/2008 10:36:57 P.M. Eastern Daylight Time,
> charmedcripchic@... writes:
>
>
>
>
>
> That's the real gist of the issue- how do you make everything work
> out when PCAs have to position you, clean you up, maybe assist
with
> putting on protection? Hiring PCAs for non personal tasks is
> difficult enough.
>
> I have some PCAs who've told me after viewing Gimps Gone Wild {in
> theory not practice} how if the need arose they'd help me because
> they care, but would still find it difficult.
>
> They find it difficult- heck I'd find it difficult- but that's
just
> me and just at this momment in my life.
>
> What if tomorro me and a special somebody fell crazy in love for
each
> other? But we couldn't do each others personal care?
>
> Years ago I was somewhat initiated into double disability love
life
> while in a serious relationship with a guy with SCI. We had to
have
> a PCA to transfer me, but my guy was able to take things from
there.
> Spontenaety was not as good but anticipation and arrousal was
> happening while waiting for a PCA to show up and give me a lift.
> Planned sex happens more often than waiting for a spontaneous
urge.
>
> Later on I had to readjust when I had an abled bod partner. All of
a
> sudden foreplay gets switched from slow and steady to brace
yourself
>
>
> To each their own and I mean no disrespect to those who need a
PCAs
> help in the bedroom. You got more gutts than anyone I know. My
kudos
> to you.
>
> --- In _independentliving@
> (mailto:independentliving@
> >
> > This is great! It's not exploitation on their part if they are
> doing
> > it of their own free will. If anything, any exploitation in the
> sex
> > business happens when somebody pays money for it, even if it is
by
> > choice. But I digress. These two are having a good time and like
> > showing off. To some it may be a fetish, and there's nothing
> wrong
> > with that. To others, it's a chance to learn something. I would
> get
> > turned on watching them. Using their equipment is creative and
> > interesting, and makes for a great example of seriously in-depth
> IL
> > skills peer training. I don't think I could bring an aide into
> the
> > process, though. I would have to have a partner who has mobility.
> >
> > On Aug 24, 2008, at 9:44 22PMEDT,
> >
> > >
> > > WARNING- VERY GRAPHIC ADULT CONTENT
> > >
> > > Don't Read this if you're uncomfortable with disability porn
> > >
> > > You've been warned
> > >
> > > XXXXXXXXXXXXXXXXXXX XXXXXXXXXXX XXXXXXXXX
> > >
> > > Gimps Gone Wild is not an unknown site here. It's a website
run
> by
> > > and for people with disabilities to sell pictures of
themselves
> from
> > > exotic settings, elegant costumes, to full out porn.
> > >
> > > Newer stars causing some commotion on the Gimps Gone Wild site
> are a
> > > married couple named
> > > ventilators. They sell pics and films that prove beyond any
> doubt
> > > that sex is not impossible as long as you have a big enough
bed,
> > > helpful PCAs, and a hoyer lift.
> > >
> > > {Hey, even I just got educated in some alternative uses for a
> hoyer
> > > lift looking at Doug and Jenns promo proofs}
> > >
> > > Doug and Jenn are breaking new ground at Gimps Gone Wild but
are
> > > they exploiting themselves? Or just participating in the syber
> > > adult film culture like any other adult is free to take part
in?
> > >
> > >
with
> > > spinal cord injuries contraversy into old fashioned qaintville.
> > >
> > > WARNING GRAPHIC LINK BELOW
> > >
> > > XXXXXXXXXXXXXXXXXXX XXXXXX
> > >
> > > Link to Doug and Jenns page at the Gimps Gone Wild website:
http://www.gimpsgonewild.com/doug_n_jenn.htm
Wednesday, August 13, 2008
IHSS and the California Budget
These people deserve a very high wage. People with all sorts of disabilities require all sorts of assistance, and people on IHSS always seem to pay really low. In 1994 the wage for an IHSS worker was $7/hr, and I, and many other people, have fought very hard to get it to $10.50/hr. This includes many trips to Sacramento to be with legislators. We have sat through hours, and hours of rallies, and it's come back to this.
(Found on the Bay Area Special Needs Yahoo Group:)
I just wanted to share what is written in the most recent SEIU newsletter with regards to proposed budget cuts:
Return to minimum wage: decrease from 11.50 per hour to 8.00, a significant difference in pay.
Loss of hours: domestic-related services would be eliminated for functional index 1-3 (preparing food, feeding, cleaning, shopping) This could mean up to 20% reductions for consumers.
Changes to functional index scores: These determine level of need: a Functional Index Score of 1 means "can perform task independently" and a score of 5 means "cannot function without assistance". The proposal is to eliminate those with an average 1-3 score.
There are rallies coming up and we as parents to the consumers can have a strong voice in this area. It should not be surprising to most of us that the majority of support workers are underemployed, less educated, often of immigrant worker status and may not have the same privileges that many of us enjoy, so their need for a voice is very important and we can fulfill that role. While the workers have union representation through SEIU, they may not be aware of their rights.
(Found on the Bay Area Special Needs Yahoo Group:)
I just wanted to share what is written in the most recent SEIU newsletter with regards to proposed budget cuts:
Return to minimum wage: decrease from 11.50 per hour to 8.00, a significant difference in pay.
Loss of hours: domestic-related services would be eliminated for functional index 1-3 (preparing food, feeding, cleaning, shopping) This could mean up to 20% reductions for consumers.
Changes to functional index scores: These determine level of need: a Functional Index Score of 1 means "can perform task independently" and a score of 5 means "cannot function without assistance". The proposal is to eliminate those with an average 1-3 score.
There are rallies coming up and we as parents to the consumers can have a strong voice in this area. It should not be surprising to most of us that the majority of support workers are underemployed, less educated, often of immigrant worker status and may not have the same privileges that many of us enjoy, so their need for a voice is very important and we can fulfill that role. While the workers have union representation through SEIU, they may not be aware of their rights.
Sunday, July 13, 2008
Thursday, July 10, 2008
DD and MH Taking Hits From Other Folks
(This is a post from Maggie Dee from the Berkeley Disabled list. Below it is my response.)
It is *very* troubling this singling out two parts of a very large cross
disabilities group...and meeting by meeting it is getting clearer and
clearer that there will be only two groups who are going to be served by
Olmstead!...and spending an entire meeting on this.
The so-called existing "allowance" is wholly inadequate! What is it now
$209? THAT is an insult to human beings! This amount of money might pay for
food if one is careful! I wonder how many people can live on a flat $50 a
week for food. I know I do but I cut EVERY corner possible and skip a meal
a day to do it.
Rents in the S.F. Bay Area **start** at $800 for a studio (S.F.) in the
*bad part of town* and most of those are not "accessible". $600!? What
about PG&E, water, garbage, telephone...not to mention food, clothing etc.
The SSI does not cover what is needed...so to make this possible we must
cut what? IHSS ancillaries? and other horrible cuts to give still MORE
money to folks with DD and MH issues!? What a gravy train they are
on!...Even they are demanding that "THEIR" programs not be cut!
So what it boils down to is a HORRIBLE US v Them! Nope, I will not play
that game! Any of us who are disabled regardless of how we are disabled
need basic human needs, we need our civil rights in tact...one canNOT feel
that one's civil rights are in tact when groups are fighting one another
for pots of money.
THEN, of all things, the "Boomers" are coming! Staggering numbers of people
will be knocking on program doors and we canNOT serve those already in the
programs!
Our people are sleeping in alleys, on top of vents in the street where
stinky heat comes to the street surface. People fight for these places.
Last year a partial quad was found with her feet and hands frozen! She was
not DD or not a person with MH...that is until she could not find housing
for 3.5 years! She crashed and burned. She lost both hands and a foot! God
knows if she has died by now. The poor soul was afraid to talk to anyone
when she was rolled into hospital in screaming pain!
I am going to have a *very* difficult time with this turn of events...a
WHOLE DAY on DD/MH! A WHOLE day on Us v Them! **WE** the collective "we"
can no longer be fighting for the shrinking dollar, we must pool our money,
spend it creatively not on one group or another!
Other than what the recent PAI/Laguna Honda lawsuit has been able to do,
setting so many units apart for those getting out of Laguna Honda or not
going into L.H. via the General Hospital diversion program (a one million
dollar fund!) the coalition lawsuit settlement established. I may not have
all the details but seems to me that someone was looking after at least a
few others who were not DD/MH or...maybe all folks being helped ARE DD/MH
diagnosis. Of course LH is one of the largest nursing homes in the nation;
the staff are paid incredibly huge sums of money to work there. The "new"
SEIU international prez wants to totally disrupt the way unions used to
work. Of course the union in S.F. has had something to say about this--but
just a matter of time before S.F. loses their ability to skirt the will of
the many.
So, as I understand it, there is no discussion of the state/federal money
that is dealing with all housing. This is like a few years ago when all
funding except one million dollars was to go into "senior housing". The
"other"/all other disabilities except folks with DD/MH status. All "other"
got a whole one million dollars for the entire **nation**!
Why are we setting up MORE silos! The DD community has been getting so much
money over the years and little remains. People on SSI who are not blind
deeply resent those on SSI who are "blind" and get so much more money! This
fighting among ourselves is so divisive!
I understand the funding streams are many and none available to "other
disabilities". Isn't it time that the "other disabilities"/cross
disabilities get some of the money. We have people on waiting lists for 7
to 10 years! Not folks who in the status of DD or MH...but the "other".
Gosh...a whole day! on DD and mental health!? And now there is a
clue/possible legislation that will make this all happen with the state's
unused land! I sat in on the Senate Floor a month or so ago and listened to
the Republicans and the Democrats debating what to do with this land...and
here it is, the land will be used for a few in our community!? I was
stunned to learn this as what I heard on the floor of the Senate would not
lead anyone to think that this land, or parts of it was an easily settled
matter! There was a huge distance between the Party lines! An now, it is
suggested that there will be 3 potential hospitals that will be used as a
"pilot" if legislation goes through...guess who for? Folks who already have
LOTS of money flowing into their various services! How demeaning to all of
us in the community...and to those of you who have to deal with all of this
awful mess!
I have heard that some states gives everyone a set amount of money and each
person has the right to choose the services that they specifically
need/want. While there is a tiny reserve for emergencies and only very
little--perhaps not enough to go around to very many people, sorta first
come/first serve. Does anyone have any "Best Practices" on this concept?
WOW! I have thrown so much your way. I have a hunch that his will be one
very LONG meeting with many feelings running high! Later...whew! Maggie
Maggie
--------------
"...other horrible cuts to give still MORE
It is *very* troubling this singling out two parts of a very large cross
disabilities group...and meeting by meeting it is getting clearer and
clearer that there will be only two groups who are going to be served by
Olmstead!...and spending an entire meeting on this.
The so-called existing "allowance" is wholly inadequate! What is it now
$209? THAT is an insult to human beings! This amount of money might pay for
food if one is careful! I wonder how many people can live on a flat $50 a
week for food. I know I do but I cut EVERY corner possible and skip a meal
a day to do it.
Rents in the S.F. Bay Area **start** at $800 for a studio (S.F.) in the
*bad part of town* and most of those are not "accessible". $600!? What
about PG&E, water, garbage, telephone...not to mention food, clothing etc.
The SSI does not cover what is needed...so to make this possible we must
cut what? IHSS ancillaries? and other horrible cuts to give still MORE
money to folks with DD and MH issues!? What a gravy train they are
on!...Even they are demanding that "THEIR" programs not be cut!
So what it boils down to is a HORRIBLE US v Them! Nope, I will not play
that game! Any of us who are disabled regardless of how we are disabled
need basic human needs, we need our civil rights in tact...one canNOT feel
that one's civil rights are in tact when groups are fighting one another
for pots of money.
THEN, of all things, the "Boomers" are coming! Staggering numbers of people
will be knocking on program doors and we canNOT serve those already in the
programs!
Our people are sleeping in alleys, on top of vents in the street where
stinky heat comes to the street surface. People fight for these places.
Last year a partial quad was found with her feet and hands frozen! She was
not DD or not a person with MH...that is until she could not find housing
for 3.5 years! She crashed and burned. She lost both hands and a foot! God
knows if she has died by now. The poor soul was afraid to talk to anyone
when she was rolled into hospital in screaming pain!
I am going to have a *very* difficult time with this turn of events...a
WHOLE DAY on DD/MH! A WHOLE day on Us v Them! **WE** the collective "we"
can no longer be fighting for the shrinking dollar, we must pool our money,
spend it creatively not on one group or another!
Other than what the recent PAI/Laguna Honda lawsuit has been able to do,
setting so many units apart for those getting out of Laguna Honda or not
going into L.H. via the General Hospital diversion program (a one million
dollar fund!) the coalition lawsuit settlement established. I may not have
all the details but seems to me that someone was looking after at least a
few others who were not DD/MH or...maybe all folks being helped ARE DD/MH
diagnosis. Of course LH is one of the largest nursing homes in the nation;
the staff are paid incredibly huge sums of money to work there. The "new"
SEIU international prez wants to totally disrupt the way unions used to
work. Of course the union in S.F. has had something to say about this--but
just a matter of time before S.F. loses their ability to skirt the will of
the many.
So, as I understand it, there is no discussion of the state/federal money
that is dealing with all housing. This is like a few years ago when all
funding except one million dollars was to go into "senior housing". The
"other"/all other disabilities except folks with DD/MH status. All "other"
got a whole one million dollars for the entire **nation**!
Why are we setting up MORE silos! The DD community has been getting so much
money over the years and little remains. People on SSI who are not blind
deeply resent those on SSI who are "blind" and get so much more money! This
fighting among ourselves is so divisive!
I understand the funding streams are many and none available to "other
disabilities". Isn't it time that the "other disabilities"/cross
disabilities get some of the money. We have people on waiting lists for 7
to 10 years! Not folks who in the status of DD or MH...but the "other".
Gosh...a whole day! on DD and mental health!? And now there is a
clue/possible legislation that will make this all happen with the state's
unused land! I sat in on the Senate Floor a month or so ago and listened to
the Republicans and the Democrats debating what to do with this land...and
here it is, the land will be used for a few in our community!? I was
stunned to learn this as what I heard on the floor of the Senate would not
lead anyone to think that this land, or parts of it was an easily settled
matter! There was a huge distance between the Party lines! An now, it is
suggested that there will be 3 potential hospitals that will be used as a
"pilot" if legislation goes through...guess who for? Folks who already have
LOTS of money flowing into their various services! How demeaning to all of
us in the community...and to those of you who have to deal with all of this
awful mess!
I have heard that some states gives everyone a set amount of money and each
person has the right to choose the services that they specifically
need/want. While there is a tiny reserve for emergencies and only very
little--perhaps not enough to go around to very many people, sorta first
come/first serve. Does anyone have any "Best Practices" on this concept?
WOW! I have thrown so much your way. I have a hunch that his will be one
very LONG meeting with many feelings running high! Later...whew! Maggie
Maggie
--------------
Maggie,
People with DD and MH issues need these services and support just as much as people on IHSS. Your comment is hurtful and really intolerant.We can't help what our needs our and funding should be equal. Did you know in the DD world, Providers have not have a rate increase in over three years. Case manger's have case loads of over 80 clients a year and autism is coming in to the regional centers at 12 case per week. Clients in the DD community do not get access because of issue around behavior and other issue related to their condition. The DD community fights really hard on employment. We fight for advocacy and transportation, and are big supporters of bills that empower people with disabilities. It costs a lot of money for 24/7 care, speech therapy, PT/OT, meds, assistive technology, independent living, and day programs...we don't ask for what we get in life, and I think it is really unfair of you to be so biased. "Live on a gravy train?" Are you nuts? What about all the people that have MR, or autism? Shouldn't we all have the right to function in our society? I am really confused with you, Maggie. I thought you were for all disability rights: physical, DD, MH-aren't we all fighting for the same thing? Your words below are intolerable, and I expect a full apology, and some understanding of the DD and MH community before you are so quick to criticize. Was it Ed Roberts who said that everyone has a role in the disability rights movement? I am very disappointed. I look forward to your response."...other horrible cuts to give still MORE
money to folks with DD and MH issues!? What a gravy train they are
on!...Even they are demanding that "THEIR" programs not be cut!"
Nick
on!...Even they are demanding that "THEIR" programs not be cut!"
Sunday, July 6, 2008
A Story that Tells it All.
Ok everyone, given that today is Sunday and a beautiful day, this story portrays awesome images in my mind of how what a diverse culture disability is but yet so normal.
>NPR.org, July 4, 2008 · The content of Seventeen magazine in Braille is
>exactly the same as Seventeen in English. There's no footnote breaking
>down what exactly is meant by Miley Cyrus' "look" nor extra explanation
>describing the makeover before-and-after images.
>
>This is perfectly fine with 14-year-old Kyra Sweeney of Santa Monica,
>Calif., who keeps a copy on her ultra-organized desk.
>
>"I get it for the articles," she explains, before acknowledging she's
>never come across a publication specifically for blind teens like herself.
>"I rely on my friends to tell me what to wear."
>
>A little over a week ago, Kyra had just finished her last day of eighth
>grade. But the academics were not over. On the following Saturday, she
>would compete in the competition to top all competitions for blind and
>visually impaired students: the Braille Challenge. Finalists from across
>the United States and Canada had worked their way through local and
>regional contests to make the cut. Lucky for her, it was to be held just
>across town at the Braille Institute of Los Angeles.
>
>The event is more intense in some ways than a spelling bee. Students
>compete in up to four categories — including the dreaded "speed and
>accuracy" test, which requires typing hundreds of words correctly in
>Braille. Dangling over Kyra's head were thousands of dollars in potential
>prizes plus the opportunity to add yet another gold star to her resume.
>
>Standing in her family's living room, Kyra recites a weekly schedule that
>reads like a newspaper's music section: lessons and recitals for choir,
>piano, flute, chamber orchestra. The week before, she spent her one "day
>off" performing for thousands at the Hollywood Bowl, alongside superstar
>flautist James Galway.
>
>"A lot of blind musicians have perfect pitch. I'm one of them, which is
>cool, I guess," she says and laughs.
>
>The bios of all the Braille Challenge participants — who range from
>first-graders to 12th-graders — are similarly impressive. Nine-year-old
>Cricket Bidleman was 4 when she was adopted from China. She learned
>English in a month, and Braille in three months. Nicole Torcolini, 18,
>created a computer program to make the periodic table of the elements
>accessible for the blind. And according to test proctors, last year, one
>participant was moonlighting for the FBI.
>
>"I liken it to Harvard's freshman class," says Dr. Stuart Wittenstein,
>superintendent of the California School for the Blind. "Most of these kids
>have never lost a competition." Consequently, Wittenstein often finds
>himself consoling parents. "It's often the first time that's happened, and
>we really have to talk about how the world is a tough place."
>
>Finding 'Normal'
>
>At the reception the night before the contest, however, conversations
>reveal that many of these kids are more concerned with appearing "normal"
>than "special." All but a few are the only blind student at their schools
>back home; being in the majority is a rare indulgence.
>
>"It's easier in some ways to be around blind kids than sighted kids," one
>girl confesses, "because you don't have to constantly prove yourself."
>
>This draws "yeahs" from four other girls, including Kyra and long-time pal
>Megan Bening of Minnesota, a vivacious, Diet Coke addicted blonde.
>
>Making friends at school is a struggle, Megan says, which is hard to
>believe, given that she keeps the people around her constantly laughing.
>
>The problem isn't that sighted kids are mean, she says matter-of-factly;
>it's that they are too nice. Paralyzed by political correctness, people
>often pretend that they haven't noticed she's blind, which adds a
>saccharine veneer to interaction.
>
>"It doesn't do any good to dance around the elephant in the room. It eats
>up too many brain cells," she advises.
>
>PC matters aside, Megan confesses that the main issue that has her nervous
>about starting ninth grade in the fall is her looks. Her "one honest
>friend" at school confessed to her that she doesn't have many "in"
>clothes: It's one of the first times she has come across a problem that
>she's not clear how to fix.
>
>Dirty Rumors
>
>Around the same time that Playboy in Braille temporarily went out of print
>in the 1980s, a nasty rumor began to circulate: Braille was going to die.
>It had nothing to with Hugh Hefner; rather, like radios and beepers, new
>technology was expected to undermine Braille's relevance. Blind and
>visually impaired individuals would soon carry around devices that could
>read and write for them, the thinking went, undermining the need for
>Braille.
>
>The rumors died down as it became apparent that technology and Braille are
>natural partners, according to Wittenstein, an outspoken advocate of
>Braille literacy. But questions about Braille's relevance lingered. In
>many ways, the National Braille Challenge represents an effort to refute
>those doubts.
>
>The contest is an opportunity for talented blind students to compete and
>get to know each other. But it's also a way to boost Braille's profile by
>tying its public image to achievement. Braille is used by only a small
>percentage of blind and visually impaired individuals, according to the
>stats.
>
>Sometimes, it's the parents who show reluctance to embrace Braille,
>Wittenstein says.
>
>"If you introduce your idea of Braille to them, it says, 'My child is
>blind, and maybe I have to start thinking of my child in a different
>way.'"
>
>Blind people are terrifying to the sighted world, says Wittenstein — who
>has full sight, but spends most of his time with blind students and
>friends — because they make people think, "If I lost my vision, how would
>I get around? How could I do my job?"
>
>For kids, however, he says the biggest obstacle is not the loss of vision
>— they find their own way of doing things — but the loss of the sighted
>world's expectations.
>
>The Competition
>
>The day of the competition, parents huddle in the hallways, straining to
>see their children through the windows in the doors of each testing room.
>One mother attempts to enter the classroom — perhaps to offer a final good
>luck squeeze — but is sternly asked to step back.
>
>At the signal of "go," the rapid click-clack-swoosh of Perkins Braillers
>takes over the building. It's a simple sort of typewriter, with a key for
>each of the six dots that make up the Braille code. Students rapidly type
>whatever the proctor or audio tape tells them. Five minutes in, pages
>covered in the raised bumps of the Braille code start streaming from the
>Braillers to the floor.
>
>Throughout the day, participants rotate through challenges that test some
>combination of spelling, reading comprehension, proofreading and
>graph-reading abilities.
>
>Although the atmosphere can be tense, the event lacks the cut-throat
>precision of the National Spelling Bee on ESPN. A girl runs out of paper
>during the speed-writing contest and taps her fingers impatiently as the
>moderator takes almost a minute — potentially costing her dozens of lost
>points — to offer her a new sheet.
>
>In another room, Cricket, last year's first-place winner in the youngest
>category, draws inquiries from confused room monitors.
>
>"Something is wrong with that girl," a sighted monitor tells the test
>proctor. "She's not typing."
>
>Another monitor inspects the situation and returns with an assessment:
>"No, she's just working so fast that you didn't see it."
>
>And the Winners Are …
>
>Good friends Kyra and Megan sit huddled together in the giant ballroom
>following a full day of competition.
>
>"We're hoping we split first place. We'll cut the PAC Mate in half," Kyra
>jokes, referring to the digital Braille computer system awarded to winners
>in each age group. The PAC Mate is a sort of digital Perkins laptop,
>complete with GPS, Internet hookup, and the ability to immediately
>translate between Braille and text.
>
>All eyes are on the pair as the announcer (actor Mark Hamill of Luke
>Skywalker fame) begins: "And the third-place winner in the Junior Varsity
>category is …. Kyra Sweeney." Kyra floats up to the stage. Megan does not
>place.
>
>Cricket, who at age 9 stands about half as tall as most of her
>competitors, takes second place in her age category. As she fields praise
>from her fans, her one hand keeps reading the ceremony program.
>
>How did it feel to win?
>
>"Normal," she says, matter-of-factly.
What an incredible true story!
>NPR.org, July 4, 2008 · The content of Seventeen magazine in Braille is
>exactly the same as Seventeen in English. There's no footnote breaking
>down what exactly is meant by Miley Cyrus' "look" nor extra explanation
>describing the makeover before-and-after images.
>
>This is perfectly fine with 14-year-old Kyra Sweeney of Santa Monica,
>Calif., who keeps a copy on her ultra-organized desk.
>
>"I get it for the articles," she explains, before acknowledging she's
>never come across a publication specifically for blind teens like herself.
>"I rely on my friends to tell me what to wear."
>
>A little over a week ago, Kyra had just finished her last day of eighth
>grade. But the academics were not over. On the following Saturday, she
>would compete in the competition to top all competitions for blind and
>visually impaired students: the Braille Challenge. Finalists from across
>the United States and Canada had worked their way through local and
>regional contests to make the cut. Lucky for her, it was to be held just
>across town at the Braille Institute of Los Angeles.
>
>The event is more intense in some ways than a spelling bee. Students
>compete in up to four categories — including the dreaded "speed and
>accuracy" test, which requires typing hundreds of words correctly in
>Braille. Dangling over Kyra's head were thousands of dollars in potential
>prizes plus the opportunity to add yet another gold star to her resume.
>
>Standing in her family's living room, Kyra recites a weekly schedule that
>reads like a newspaper's music section: lessons and recitals for choir,
>piano, flute, chamber orchestra. The week before, she spent her one "day
>off" performing for thousands at the Hollywood Bowl, alongside superstar
>flautist James Galway.
>
>"A lot of blind musicians have perfect pitch. I'm one of them, which is
>cool, I guess," she says and laughs.
>
>The bios of all the Braille Challenge participants — who range from
>first-graders to 12th-graders — are similarly impressive. Nine-year-old
>Cricket Bidleman was 4 when she was adopted from China. She learned
>English in a month, and Braille in three months. Nicole Torcolini, 18,
>created a computer program to make the periodic table of the elements
>accessible for the blind. And according to test proctors, last year, one
>participant was moonlighting for the FBI.
>
>"I liken it to Harvard's freshman class," says Dr. Stuart Wittenstein,
>superintendent of the California School for the Blind. "Most of these kids
>have never lost a competition." Consequently, Wittenstein often finds
>himself consoling parents. "It's often the first time that's happened, and
>we really have to talk about how the world is a tough place."
>
>Finding 'Normal'
>
>At the reception the night before the contest, however, conversations
>reveal that many of these kids are more concerned with appearing "normal"
>than "special." All but a few are the only blind student at their schools
>back home; being in the majority is a rare indulgence.
>
>"It's easier in some ways to be around blind kids than sighted kids," one
>girl confesses, "because you don't have to constantly prove yourself."
>
>This draws "yeahs" from four other girls, including Kyra and long-time pal
>Megan Bening of Minnesota, a vivacious, Diet Coke addicted blonde.
>
>Making friends at school is a struggle, Megan says, which is hard to
>believe, given that she keeps the people around her constantly laughing.
>
>The problem isn't that sighted kids are mean, she says matter-of-factly;
>it's that they are too nice. Paralyzed by political correctness, people
>often pretend that they haven't noticed she's blind, which adds a
>saccharine veneer to interaction.
>
>"It doesn't do any good to dance around the elephant in the room. It eats
>up too many brain cells," she advises.
>
>PC matters aside, Megan confesses that the main issue that has her nervous
>about starting ninth grade in the fall is her looks. Her "one honest
>friend" at school confessed to her that she doesn't have many "in"
>clothes: It's one of the first times she has come across a problem that
>she's not clear how to fix.
>
>Dirty Rumors
>
>Around the same time that Playboy in Braille temporarily went out of print
>in the 1980s, a nasty rumor began to circulate: Braille was going to die.
>It had nothing to with Hugh Hefner; rather, like radios and beepers, new
>technology was expected to undermine Braille's relevance. Blind and
>visually impaired individuals would soon carry around devices that could
>read and write for them, the thinking went, undermining the need for
>Braille.
>
>The rumors died down as it became apparent that technology and Braille are
>natural partners, according to Wittenstein, an outspoken advocate of
>Braille literacy. But questions about Braille's relevance lingered. In
>many ways, the National Braille Challenge represents an effort to refute
>those doubts.
>
>The contest is an opportunity for talented blind students to compete and
>get to know each other. But it's also a way to boost Braille's profile by
>tying its public image to achievement. Braille is used by only a small
>percentage of blind and visually impaired individuals, according to the
>stats.
>
>Sometimes, it's the parents who show reluctance to embrace Braille,
>Wittenstein says.
>
>"If you introduce your idea of Braille to them, it says, 'My child is
>blind, and maybe I have to start thinking of my child in a different
>way.'"
>
>Blind people are terrifying to the sighted world, says Wittenstein — who
>has full sight, but spends most of his time with blind students and
>friends — because they make people think, "If I lost my vision, how would
>I get around? How could I do my job?"
>
>For kids, however, he says the biggest obstacle is not the loss of vision
>— they find their own way of doing things — but the loss of the sighted
>world's expectations.
>
>The Competition
>
>The day of the competition, parents huddle in the hallways, straining to
>see their children through the windows in the doors of each testing room.
>One mother attempts to enter the classroom — perhaps to offer a final good
>luck squeeze — but is sternly asked to step back.
>
>At the signal of "go," the rapid click-clack-swoosh of Perkins Braillers
>takes over the building. It's a simple sort of typewriter, with a key for
>each of the six dots that make up the Braille code. Students rapidly type
>whatever the proctor or audio tape tells them. Five minutes in, pages
>covered in the raised bumps of the Braille code start streaming from the
>Braillers to the floor.
>
>Throughout the day, participants rotate through challenges that test some
>combination of spelling, reading comprehension, proofreading and
>graph-reading abilities.
>
>Although the atmosphere can be tense, the event lacks the cut-throat
>precision of the National Spelling Bee on ESPN. A girl runs out of paper
>during the speed-writing contest and taps her fingers impatiently as the
>moderator takes almost a minute — potentially costing her dozens of lost
>points — to offer her a new sheet.
>
>In another room, Cricket, last year's first-place winner in the youngest
>category, draws inquiries from confused room monitors.
>
>"Something is wrong with that girl," a sighted monitor tells the test
>proctor. "She's not typing."
>
>Another monitor inspects the situation and returns with an assessment:
>"No, she's just working so fast that you didn't see it."
>
>And the Winners Are …
>
>Good friends Kyra and Megan sit huddled together in the giant ballroom
>following a full day of competition.
>
>"We're hoping we split first place. We'll cut the PAC Mate in half," Kyra
>jokes, referring to the digital Braille computer system awarded to winners
>in each age group. The PAC Mate is a sort of digital Perkins laptop,
>complete with GPS, Internet hookup, and the ability to immediately
>translate between Braille and text.
>
>All eyes are on the pair as the announcer (actor Mark Hamill of Luke
>Skywalker fame) begins: "And the third-place winner in the Junior Varsity
>category is …. Kyra Sweeney." Kyra floats up to the stage. Megan does not
>place.
>
>Cricket, who at age 9 stands about half as tall as most of her
>competitors, takes second place in her age category. As she fields praise
>from her fans, her one hand keeps reading the ceremony program.
>
>How did it feel to win?
>
>"Normal," she says, matter-of-factly.
What an incredible true story!
Wednesday, July 2, 2008
Yearning for Summer Camp
It is always towards the end of June that I begin to miss Skylake Ranch Camp. This was not just a place for a kid to escape to, and learn and make friends, and all that stuff. For me, today, it has a much deeper meaning. When you are young and have a physical disability, you do not understand the slight actions of people not wanting to hang out with you. Skylake Ranch Camp (SRC) made me feel right at home.
There were never any questions about if I could or could not do something. It was always just "how can we include Nick?" And people would come up with very creative ways to help me to get to the top of a mountain. That is what three counselors allowed me to do. They literally carried my stroller up the 317 feet of steps and mist. I remember when my friends and I finally got to the top. All of a sudden, there was a great peace, and everyone became silent. We looked over the edge, and I remember seeing the whole valley. This was 22 years ago, and these memories are still vivid in my mind, and help me remember that I want to start a summer camp for all to enjoy!
There were never any questions about if I could or could not do something. It was always just "how can we include Nick?" And people would come up with very creative ways to help me to get to the top of a mountain. That is what three counselors allowed me to do. They literally carried my stroller up the 317 feet of steps and mist. I remember when my friends and I finally got to the top. All of a sudden, there was a great peace, and everyone became silent. We looked over the edge, and I remember seeing the whole valley. This was 22 years ago, and these memories are still vivid in my mind, and help me remember that I want to start a summer camp for all to enjoy!
Tuesday, June 17, 2008
Parents With Kids With Disabilities
Something you all should read.
This should be at the front entrance of every social service agency, including the regional centers, and IHSS!
finally arrives. You pack your bags and
off you go.
Several hours later, the plane lands.
The flight attendant comes and says,
'Welcome to Holland.'
the fact that you didn't get to Italy,
you may never be free
to enjoy the very special,
the very lovely things about Holland.
This should be at the front entrance of every social service agency, including the regional centers, and IHSS!
- Welcome To Holland
- by
- I am often asked to describe the experience
of raising a child with a disability -
to try to help people who have not shared
that unique experience to understand it,
to imagine how it would feel.
- It's like this:
planning a fabulous vacation trip - to Italy.
You buy a bunch of guidebooks and make your
wonderful plans. The coliseum.
The Michaelangelo's David.
The gondolas in Venice.
You may learn some handy phrases in Italian.
It's all very exciting.
finally arrives. You pack your bags and
off you go.
Several hours later, the plane lands.
The flight attendant comes and says,
'Welcome to Holland.'
'Holland?! you say.'
'What do you mean, Holland?
I signed up for Italy!
I'm supposed to be in Italy.
All my life I've dreamed of going to Italy.'
But there's been a change in the flight plan.
They've landed in Holland
and there you must stay.
The important thing is that they haven't taken
you to a horrible, disgusting, filthy place,
full of pestilence, famine and disease.
It's just a different place.
So you must go out and buy new guidebooks.
And you must learn a whole new language.
And you will meet a whole new group of
people you would never have met.
It's just a different place.
It's slower-paced than Italy,
less flashy than Italy. but after you've
been there for a while and you catch your
breath, you look around, and you begin to
notice that Holland has windmills,
Holland has tulips,
Holland even has Rembrandts.
But everyone you know is busy
coming and going from Italy,
and they're all bragging about
what a wonderful time they had there.
And for the rest of your life,
you will say,
'Yes, that's where I was supposed to go.
That's what I had planned.'
And the pain of that will
never, ever, ever go away,
because the loss of that dream
is a very significant loss.
the fact that you didn't get to Italy,
you may never be free
to enjoy the very special,
the very lovely things about Holland.
Does This Go Too Far?
The ADA has brought Americans with disabilities a long way, and there are still a great many problems with the law. This new proposal seems to have not enough oversight, and not enough education. Telling small business owners that they must accommodate is different than saying, "If you accommodate, you'll have more customers, and your business will reach a bigger audience."
I also have a feeling that the restaurant industry, the entertainment industry will be all in a tizzy over this one. I say that universal design laws known for new housing across America would be a lot more useful than this legislation. I think the regulations about service animals sets a dangerous precedent and can be misinterpreted. Bush trying to be like Daddy, lol.
By Robert Pear
I also have a feeling that the restaurant industry, the entertainment industry will be all in a tizzy over this one. I say that universal design laws known for new housing across America would be a lot more useful than this legislation. I think the regulations about service animals sets a dangerous precedent and can be misinterpreted. Bush trying to be like Daddy, lol.
By Robert Pear
WASHINGTON: The Bush administration is about to propose far-reaching new rules that would give people with disabilities greater access to tens of thousands of courtrooms, swimming pools, golf courses, stadiums, theaters, hotels and retail stores.
The proposal would substantially update and rewrite federal standards for enforcement of the Americans With Disabilities Act, a landmark civil rights law passed with strong bipartisan support in 1990. The new rules would set more stringent requirements in many areas and address some issues for the first time, in an effort to meet the needs of an aging population and growing numbers of disabled war veterans.
More than seven million businesses and all state and local government agencies would be affected. The proposal includes some exemptions for parts of existing buildings, but any new construction or renovations would have to comply.
The new standards would affect everything from the location of light switches to the height of retail service counters, to the use of monkeys as "service animals" for people with disabilities, which would be forbidden.
The White House approved the proposal in May after a five-month review. It is scheduled to be published in the Federal Register on Tuesday, with 60 days for public comment. After considering those comments, the government would issue final rules with the force of law.
Already, the proposal is stirring concern. The United States Chamber of Commerce says it would be onerous and costly, while advocates for disabled Americans say it does not go far enough.
Since the disability law was signed by the first President Bush, advances in technology have made services more available to people with disabilities. But Justice Department officials said they were still receiving large numbers of complaints. In recent months, the federal government has settled lawsuits securing more seats for disabled fans at Madison Square Garden in New York and at the nation's largest college football stadium, at the University of Michigan.
The Census Bureau says more than 51 million Americans have some kind of disability, with nearly two-thirds of them reporting severe impairments.
The proposed rules, under development for more than four years, flesh out the meaning of the 1990 law, which set forth broad objectives. The 215,000-word proposal includes these new requirements:
¶Courts would have to provide a lift or a ramp to ensure that people in wheelchairs could get into the witness stand, which is usually elevated from floor level.
¶Auditoriums would have to provide a lift or a ramp so wheelchair users could "participate fully and equally in graduation exercises and other events" at which members of the audience have direct access to the stage.
¶Any sports stadium with a seating capacity of 25,000 or more would have to provide safety and emergency information by posting written messages on scoreboards and video monitors. This would alert people who are deaf or hard of hearing.
¶Theaters must provide specified numbers of seats for wheelchair users (at least five in a 300-seat facility). Viewing angles to the screen or stage must be "equivalent to or better than the average viewing angles provided to all other spectators."
¶Light switches in a hotel room could not be more than 48 inches high. The current maximum is 54 inches.
¶Hotels must allow people with disabilities to reserve accessible guest rooms, and they must honor these reservations to the same degree they guarantee other room reservations.
¶At least 25 percent of the railings at fishing piers would have to be no more than 34 inches high, so that a person in a wheelchair could fish over the railing.
¶At least half of the holes on miniature golf courses must be accessible to people using wheelchairs, and these holes must be connected by a continuous, unobstructed path.
¶A new swimming pool with a perimeter of more than 300 feet would have to provide "at least two accessible means of entry," like a gentle sloping ramp or a chair lift.
¶New playgrounds would have to provide access to slides, swings and other play equipment for children who use wheelchairs.
The Justice Department acknowledged that some of the changes would have significant costs. But over all, it said, the value of the public benefits, estimated at $54 billion, exceeds the expected costs of $23 billion.
In an economic analysis of the proposed rules, the Justice Department said the need for an accessible environment was greater than ever because the Iraq war was "creating a new generation of young men and women with disabilities."
John Wodatch, chief of the disability rights section of the Justice Department, said: "Disability is inherent in the human condition. The vast majority of individuals who are fortunate enough to reach an advanced age will benefit from the proposed requirements."
By 2010, the department estimates, 2 percent of the adult population will use wheelchairs, and 4 percent will use crutches, canes, walkers or other mobility devices. Likewise, it said, as the population ages, the number of people with hearing loss will increase.
Under the 1990 law, businesses are supposed to remove barriers to people with disabilities if the changes are "readily achievable," meaning they can be "carried out without much difficulty or expense."
The Bush administration is proposing a safe harbor for small businesses. They could meet their obligations in a given year if, in the prior year, they had spent at least 1 percent of their gross revenues to remove barriers.
Curtis Decker, executive director of the National Disability Rights Network, a coalition of legal advocates, said: "Safe harbors make us very nervous. A small business could spend the requisite amount of money and still not be accessible."
Randel Johnson, a vice president of the United States Chamber of Commerce, said the proposed rules "are so long and technically complex that even the best-intentioned small business could be found out of compliance by a clever lawyer looking to force a settlement."
The Justice Department cited the "monetary cost cap" as one of several steps it was taking to limit the rules' impact on small businesses. But Johnson said he feared that courts would view the ceiling as a floor and tell businesses they should spend 1 percent of their revenues on removing barriers.
The proposed rules affirm the right of people with disabilities to use guide dogs and other service animals in public places, but they tighten the definition to exclude certain species.
When the existing rules were adopted in the early 1990s, the Justice Department said, few people anticipated the current trend toward "the use of wild, exotic or unusual species" as service animals.
The proposed rules define a service animal as "any dog or other common domestic animal individually trained to do work or perform tasks" for a person with a physical or mental disability.
Under this definition, the administration says, monkeys could not qualify as service animals, nor would reptiles; amphibians; rabbits, ferrets and rodents; or most farm animals.
Under the rules, a hotel, restaurant, theater, store or public park could ask a person with a disability to remove a service animal if the animal was out of control or not housebroken, or if it posed a direct threat to the health or safety of others.
By way of example, the rules say that a theater could exclude a dog that disrupted a live performance by repeated barking.
The rules confirm that people with disabilities can use traditional wheelchairs, power wheelchairs and electric scooters in any public areas open to pedestrians.
But shopping centers, amusement parks and other public places could impose reasonable restrictions on two-wheeled Segway vehicles, golf carts and "other power-driven mobility devices" used by those with disabilities.
Friday, June 6, 2008
Meeting New People
Today I met five people. I hired a few of them to work for me on a personal care base program. I hope that these people will work out.
I had lunch at the Vietnamese restaurant, and ordered shrimp rolls. I had a few drinks when I came home. I had a good dinner.
------------------------
Many people have problems with getting IHSS in Alameda county. Unfortunately, I am now one of those people. Despite being cleared by Medi-Cal, IHSS is refusing to pay. I have been using my personal income to pay for IHSS, and it's not fair. Let me know your input,
Nick
I had lunch at the Vietnamese restaurant, and ordered shrimp rolls. I had a few drinks when I came home. I had a good dinner.
------------------------
Many people have problems with getting IHSS in Alameda county. Unfortunately, I am now one of those people. Despite being cleared by Medi-Cal, IHSS is refusing to pay. I have been using my personal income to pay for IHSS, and it's not fair. Let me know your input,
Nick
Thursday, June 5, 2008
Dianne Odell
Below are photos of Dianne Odell's iron lung displayed at her end of life ceremonies.
What are your opinions views and feelings of having our assistive devices displayed during last rite ceremonies when we have passed on?
Member adaptdan/johnny crescendo recently posted candidly about end life last wishes akin to this discussion as well.
I mean no disrepect to Miss Odell and family but I personally have a hard time with the way Dianne Odell's photo is at the headreast of the iron lung that she had to spend her life in, appearing very much like a casket display itself.
Why not wake Dianne herself in a casket or display her photo alone? To me the iron lung was not Dianne. It was equipment she had to rely but failed during a power outage and contributed to her death.
We don't see mangled cars displayed up front, first thing, for the services of people who die in car wrecks. Or other assistive devices of the departed like canes, toupee's, false teeth, artificial joints limbs, organ transplants, etc, displayed with the person's picture on top of it, so why the iron lung display?
Just my opinion. Varying opinions welcomed and encouraged here.
=====press photos of Dianne Odells funeral services below======
Jason Howell, right, looks at awards and photos of Dianne Odell during the visitation Friday at Campbell Street Church of Christ.
Josephine Murphy looks at Dianne's photos, awards and honors, including an honorary member certificate from the Red Hat Society and a 'Duchess of Paducah' plaque from Paducah, Ky.
Guests pass Dianne Odell's iron lung as they enter visitation on Friday at Campbell Street Church of Christ in Jackson.
-----------------------------------------
My response:
I do not think it would be inappropriate in any way. For Dianne Odell's picture to be displayed I think is a normal process. People were used to seeing her in the iron lung, and that's what people knew. I have a lot of friends who use iron lungs, wheelchairs, and respirators, and they would not be bothered one bit by having their technology displayed at their memorial service. I think people fail to communicate that people with disabilities are very grateful for the assistive technology. I know one thing: I want my wheelchair buried with me when I go. I oftentimes look at my chair that I use as my legs and I think about how many miles my wheels have gone, and how invaluable this technology is that allows me to drive with my chin, just as Dianne Odell's iron lung allowed her to breathe. This is an issue of dignity, and what really should be the focus is the soul of the person. Is anyone afraid of the iron lung? I'm confused.
Nick
What are your opinions views and feelings of having our assistive devices displayed during last rite ceremonies when we have passed on?
Member adaptdan/johnny crescendo recently posted candidly about end life last wishes akin to this discussion as well.
I mean no disrepect to Miss Odell and family but I personally have a hard time with the way Dianne Odell's photo is at the headreast of the iron lung that she had to spend her life in, appearing very much like a casket display itself.
Why not wake Dianne herself in a casket or display her photo alone? To me the iron lung was not Dianne. It was equipment she had to rely but failed during a power outage and contributed to her death.
We don't see mangled cars displayed up front, first thing, for the services of people who die in car wrecks. Or other assistive devices of the departed like canes, toupee's, false teeth, artificial joints limbs, organ transplants, etc, displayed with the person's picture on top of it, so why the iron lung display?
Just my opinion. Varying opinions welcomed and encouraged here.
=====press photos of Dianne Odells funeral services below======
Jason Howell, right, looks at awards and photos of Dianne Odell during the visitation Friday at Campbell Street Church of Christ.
Josephine Murphy looks at Dianne's photos, awards and honors, including an honorary member certificate from the Red Hat Society and a 'Duchess of Paducah' plaque from Paducah, Ky.
Guests pass Dianne Odell's iron lung as they enter visitation on Friday at Campbell Street Church of Christ in Jackson.
-----------------------------------------
My response:
I do not think it would be inappropriate in any way. For Dianne Odell's picture to be displayed I think is a normal process. People were used to seeing her in the iron lung, and that's what people knew. I have a lot of friends who use iron lungs, wheelchairs, and respirators, and they would not be bothered one bit by having their technology displayed at their memorial service. I think people fail to communicate that people with disabilities are very grateful for the assistive technology. I know one thing: I want my wheelchair buried with me when I go. I oftentimes look at my chair that I use as my legs and I think about how many miles my wheels have gone, and how invaluable this technology is that allows me to drive with my chin, just as Dianne Odell's iron lung allowed her to breathe. This is an issue of dignity, and what really should be the focus is the soul of the person. Is anyone afraid of the iron lung? I'm confused.
Nick
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