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12/09/12

Permalink 09:35:00 am, by eleanor Email , 402 words   English (US) latin1
Categories: thoughts, The Law, Advocacy

THE U.S. SENATE LETS US DOWN

In the vote to ratify the U.N. Convention on the Rights of Persons With Disabilities the Senate did not reach the 67 needed for ratification. The vote total was 61. All the Democrats voted yea, 38 Republicans voted nay.

This is very hard for me to understand as the Convention is mostly based on the USA ADA Legislation which was passed in 1990 in George W. Bush's administration. President Obama signed the convention 2 years ago which had been negotiated during  President W. Bush 's Administration

To me the U.S ADA Laws are one of the watershed events for people with disabilities here in the USA. It was the beginning of equal rights for us and has been a beacon and act to follow in other countries. In fact 126 other countries have ratified this Treaty.

And the ironic part is that Dec 3rd three days earlier was the 20th Anniversary of the International Day of Persons with Disabilities. Countries around the world were celebrating it!  And we were disavowing our own legacy.

I was so angry at this Senate's failure to ratify the Treaty I could not write this blog. But as I read and heard so many others expressing the dismay and disbelief I felt I knew I was not alone. There were selfish reasons given that individuals felt that it might intrude on their home schooling their disabled children and they didn't trust the UN. These and other reason's were not founded in reality. And as there are 650 million people in the word who live with a disability this Convention is meaningful and important. We were the country that made our ADA so meaningful to the world that it has gone viral thru the Convention . See Ability magazine's recent issue:  http://www.abilitymagazine.com/Global-Treaty-to-Protect-People-With-Disabilities-Fails-to-Pass-Senate.html

SHAME,SHAME,SHAME on all Senators who voted against it!!!

But it will be back on the floor for a Senate vote again and the country will be prepared to demand the vote expected from The United States of America's Senate!

 

One of the 160 million young people in our world that live with disabilities asking only for a chance for equal opportunity to live a better life...and truly this is what the majority of the citizens of the USA stand for.

boy in wheelchair raising arms in the air.

Discrimination against any person on the basis of disability is a violation of the inherent dignity and worth of the human person.

-Preamble to the UN Convention on the
Rights of Persons with Disabilities

 

ellie

12/02/12

Permalink 12:28:00 pm, by eleanor Email , 1216 words   English (US) latin1
Categories: my life, Thoughts, Adapting Activities

AGING OR GROWING OLD GRACEFULLY WITH MULTIPLE SCLEROSIS

There have been a lot of very useful and informative articles in the Journal's for Multiple Sclerosis on aging well with MS.  I immediately gravitate to read these articles as I want as much information as I can on aging. However I'm not 50 or 60  which a lot of these articles are referring to I'm 77.  I'd have to say I guess I've been aging pretty well with multiple sclerosis for quite a few years now. But I've reached a point where other medical problems are becoming important too. And my MS is considered an underlying condition.  Luckily nothing too serious just Type 2 Diabetes, Cararacts, Macular Degeneration and Cervical Spondylitis and Stenosis have joined in with MS to challenge me.

Am I aging or am I also just getting older or old.  Now if you consider feeling old is just a stage of the mind than on some days I'm very young . Yet on other days I don't feel so young.  Like recently following two UTI's in succession and now in a relapse I have really been tired and looking old.  But I'm coming out of it and starting to look young again. So I thought I would put my thoughts on this down in my blog

I feel that Living Well just like Coping Well covers such a big range of ways to handle something.  And as MS is very individual and unique to each of us we have to develop our own way of handling aging as we have done all along with just MS.

I've been thinking about my future and how I want to handle aging with MS and other conditions that can come along. And this is why my headline is Growing Old Gracefully with Multiple Sclerosis. You see for me to do this gracefully is a challenge! Yet I have found that taking each day gracefully really works for me. Oh I have my moments I blow up and would like to blow a few things up too. I also can feel down and want not to even get up out of bed.

But years ago I promised  myself that I will control my emotions and use assistive devices and adapt my environment to compensate for my physical losses due to MS. Because as a PT I know  my physical adaptations will help me to use my body and my mind as efficiently as my body has been designed to do.To move and think gracefully is what our body was built to do.

What do I mean by this ? Well let's go to the dictionary's definition of gracefully.

 There are 3 parts to most dictionaries definition of the word graceful

1, A graceful shape or object is attractive

2. graceful movement is smooth and beautiful

3.Showing good manners and respect for other people.

I like this three part definition of gracefully because it encompasses what I wish to try to achieve. I know I will feel and will live better if I do this.

The first part : A graceful shape or object is attractive.This may sound unimportant when you feel your body and world may be falling apart. But it makes the other two easier to attain. When you look in the mirror and you look nice the world seems easier. People react to you differently too.I reflect back on the patients I treated in home care. Those that let themselves go never did as well. I especially remember a woman in her 80's. I was treating her to increase her range of motion in her shoulder after she had had a mastectomy. The first day I arrived she was all dressed in a suit with earrings and pearls around her neck. I had her take off her jacket and blouse to do the evaluation and start the range of motion exercises. When I was scheduling the next appointment she asked me not to make it so early because it took her time to get dressed.  I said you don't have to get dressed for this you know you could get dressed after I leave. No No she said you don't understand I have always gotten fully dressed every single day of my life. And it saved me when my husband was dying of cancer because every day I knew I had to get up and put on a loving supportive face . So each day when dressed I would look in the mirror and I felt I can handle anything and I feel the same way now.  So I said OK and  she did handle things well. I have always remembered her and think it is best to look attractive to be on top of things when something bad is happening to you.

The next one on the list is Graceful Movements are smooth and beautiful.  I do not move very smooth and beautifully most of the time anymore.  And this is where proper use of assistive devices to help yourself is so important and they work.  I'll never be a gorgeous beautifully moving lady but when my walking is gimpy the use of a cane or a Lofstrand crutch does wonders. If it is not too bad the walls or furniture works fine. But if I need more assist there's my wheeled walker and my electric wheelchair. I try to stand tall to move like there is music playing when walking and when I'm sitting to sit up straight tuck in my tummy and look like a queen. Doing so will put less stress on my joints, ligaments and muscles. In many ways it's prevention of orthopedic conditions as well as psychological depression.It reminds me of when I was young  I kept growing taller and I ended up at 5'11. Everyone kept warning me not to stoop. My mother had me walk and sit down and get up with a book on my head.

The third part is: Being Graceful is Having Good Manners and Respecting Other People. And this is as equally important as the other two parts . From a purely selfish perspective being nice to other people and having good manners will make you a person that other people want to be around. And if you are feeling down, depressed or tired it will make you be less tired and less depressed when you have been nice to somebody. In fact I have found when things are going really bad and the best way to feel better is to take a project where I do something to help somebody else.I felt I needed Poetry to finish my thoughts on this subject.The selection below seemed to do it.

 

I CAN STILL MATTER

Submitted by: Tkrause

Author: Tom Krause

I CAN STILL MATTER
As time passes on
I turn the next page
to discover a new me
while I continue to age.
I may no longer be
who I was long ago
but I still can matter -
that much I know.
With a new set of tools
I have gathered from time -
I keep looking forward
to more mountains to climb.
My best is not over
as the skeptics might say -
I just learn how to conquer
In a much wiser way.
So don't sell me short -
I am not nearly done.
I CAN STILL MATTER -
I've only just begun.
Tom Krause - Copyright 2012
www.coachkrause.com

ellie

10/15/12

Permalink 01:06:00 pm, by eleanor Email , 969 words   English (US) latin1
Categories: thoughts, The Law, Advocacy, adapting activities

THE POWER OF WE

 
 
When blog action day decided that the topic this year would be Power of We I immediately knew what I wanted to write about.
An annoyance of mine is that when people talk about the equality changes that we have made in our country they talk about the Suffragette's and the Civil Rights movement and more recently Gay Rights. They never mention that people with disabilities rose up also again and again and demanded action for their equal rights. They fought verbally and by sit ins for equal access to a quality life.
People with disabilities have always been looked down upon and considered that they were in many ways lesser people.  There are exceptions of course of people who stood up and demanded more. But to make larger change they recognized that the Power of We was needed to make lasting change for all of us with disabilities.
From the research that I've done the first definite group stand was made in 1935.  This was when The League of the Physically Handicapped protested vehemently that the WPA had been stamping PH against people who are physically handicapped and they were not allowed to have jobs.

"We don't want tin cups we want jobs"

There was quite a bit of extra anger because the President of United States was up in the White House sitting in his wheelchair when this was happening.
300 members of the League for the Physically Handicapped staged a nine-day sit in at the Home Relief Bureau of New York City. Eventually, they helped secure several thousand jobs nationwide. The League of the Physically Handicapped is accepted as the first organization of people with disabilities by people with disabilities.
The Power of We was what started the of National Barrier-Free Movement

Sometimes 90% execution just doesn't cut it!

In the 1950s, disabled veterans and people with disabilities began the barrier-free movement. The combined efforts of the Veterans Administration, The President's Committee on Employment of the Handicapped, and the National Easter Seals Society, among others, resulted in the development of national standards for "barrier-free" buildings.

Parents of youth diagnosed with mental retardation founded the Association for Retarded Citizens (ARC). The association works to change the public's ideas about mental retardation. Its members educate parents and others, demonstrating that individuals with mental retardation have the ability to succeed in life. The ARC works to ensure that the estimated 7.2 million Americans with mental retardation and related developmental disabilities have the services and supports they need to grow, develop, and live in communities across the nation.

THE INDEPENDENT LIVING MOVEMENT

One man starts a movement in 1962 for inclusion that grows because of it's need and makes a remarkable change in quality of life for himself and all other people with disabilities.

1

Ed Roberts, a young man with polio, enrolled at the University of California, Berkeley. After his admission is rejected, he fights to get the decision overturned. He becomes the father of the Independent Living Movement and helps establish the first Center for Independent Living (CIL).

Another Disability member and activist fights for her rights and joins forming the Independent Living Movement.

J

Judy Heumann sues the New York City Board of Education in 1970 when her application for a teaching license is denied. The stated reason is the same originally used to bar her from kindergarten-that her wheelchair is a fire hazard. The suit, settled out of court, launches Heumann's activism. She later founds the Independent Living movement with Ed Roberts and oversees education and VR programs in the United States during the 1990s.

Then in 1974: Inaugural Convention of People First

The first convention for People First is held in Portland, Oregon. People First is a national organization of people with developmental disabilities learning to speak for themselves and supporting each other in doing so.

1975: Staten Island's Willowbrook State School Finally Shuttered thanks to The Power of We

After a five year battle with parents and advocates, New York Governor Hugh Carey signs the Willowbrook consent order, closing down a state institution notorious for its horrible conditions-broken plumbing, not enough doctors or medical supplies, patients living in filthy residences with no clean clothing, to name a few. Governor Carey pledges to relocate patients in community-based settings. Willowbrook remained open until 1978, but forever changed ideas about community-based care for people with developmental disabilities.

1977: Disability Demonstrators Occupy Federal Office

 

Judy Heumann 's powerful testimony 1977

News report describing conditions at sit in.

Demonstrators led by Judy Heumann take over the Health Education and Welfare (HEW) office in UN Plaza, San Francisco, California, in protest of President Reagan's HEW Secretary Califano's refusal to complete regulations for Section 504 of the Rehabilitation Act of 1973. This Section made it illegal for federal agencies, public universities, and other public institutions receiving any federal funds to discriminate on the basis of disability. After 25 days, Califano relents and signs the regulations into effect, making this take-over event the longest occupation of a federal office by protestors in U.S. history.

1978: Disability Activists Protest Inaccessibility of Denver Buses

In Denver, Colorado, nineteen members of the Atlantis Community of ADAPT  block buses with their wheelchairs-chanting "We will ride!"-to demonstrate against the inaccessibility of public transportation.

A year long civil disobedience followed to force the Denver Transit Authority to purchase wheelchair lift-equipped buses.

And on it went and stills goes....slowly, slowly progress made by The Power of We. Protesting with sit in's, lobbying for legislation, suing business's, institutions or government to gain equality. Major legislation has been enacted like the Americans with Disability Act in 1990. Yet there is so much more to be covered and for citizens and business's etc. to legally follow the law.

A very inclusive Disability History Timeline from 1817 to 2001 shows the long history of the fight for equality and how it was The Power of We that made the difference.

http://isc.temple.edu/neighbor/ds/disabilityrightstimeline.htm 

ellie

10/05/12

Permalink 10:17:00 am, by eleanor Email , 894 words   English (US) latin1
Categories: thoughts, Paralympics, The Law, Advocacy, Adaptive Sports

WHY DOES THE USA NOT PERFORM WELL AT THE PARALYMPICS?

US-swimmer-cleared-to-compete-at-Paralympics-PF2672RD-x-large

In the last six Olympic summer games the USA placed first in five of them.  Yet the USA lags behind in the Paralympic games coming in sixth place this year. They are behind China, Russia,Great Britain, Ukraine and Australia . 

Why?  Do we have less disabled people to participate? There are within the 5 to 17 age range 53.9 million school age children in the USA. And of that number 2.8 million were reported in 2010 as having a disability.

The USA women made tremendous progress in the Olympic Games because of inclusion and accessibility in sports like men had.  My question is do children and young adults with disabilities in their school years have equal access and inclusion in a sports program that would be accommodated for the disability?  If not why not? The chart below shows sports that the athletes participated in this year at the Paralympics.

paralympics graph

I do know that Paralympics participation has more older people then the Olympics.The age range this year goes from 12 to 71. A lot of the athletes come to the Paralympics later in their life.  This would make sense for our young men or women with Spinal Cord injuries, Multiple Sclerosis, Amputees or other adult trauma or disease. And of course our returning injured veterans. There are currently 20 members who are veterans or soldiers on the Paralympic Team USA.

But what about the school aged children that have become disabled as well as those from birth.Those children or young adults that do not fit the Special Olympics criteria. Are they not being given an opportunity to develop their physical ability and skills? Or is it a lack of self esteem or support to encourage them that hinders their participation? Is this one of the reasons?

There are other reason's to consider  for the USA not doing as well in the Paralympics as we do in the Olympics. One of these was summed up well by Gary Norman an attorney and civil rights campaigner based in Baltimore. He stated that the USA is one of the world's leaders in disability rights. However, we still have the challenge of transforming our strong domestic legal framework into everyday protections and  respect for people with disabilities. We still have too much discrimination and attitudinal  barriers.  For example we are one of the few countries not to have ratified The United Nations Convention on the Rights of Persons with Disabilities.This Convention is based on our USA ADA legislation.

There are many knowledgeable people who feel strongly that this discrimination has been a reason why grass roots programs nation wide is so limited for people with disabilities.These programs as they have in other countries would make a tremendous difference.

Yet there are other reasons too. We do not have heavy funding by our government in health and sports as other countries do.  And as a result of less funding we have  less people with a disability participating in sports. Because of this there is less coverage. And as less news about a subject makes it seem unimportant less funding of them would seem un- necessary. 

And this is of course what we see.The newspaper articles and TV coverage of the Paralympics is sparse at best . Is it  because they feel that public interest in the disabled sports would not be there? And the bottom line is ratings to money.

But the money issue is beginning to change for the Paralympics. In 2003 three athletes took the USOC to court.  They alleged that the United States Olympic Committee under funded American Paralympic athletes.  They stated that the proof that they were discriminated against was evident in the smaller monetary prizes, lower personal allowances and fewer healthcare benefits then their Olympic counterparts did.  The Paralympic athletes did not win in court so the USOC prevailed and they were not forced to allocate changes to their funding.  However conscience prevailed and the USOC increased funding to Paralympics Sport during the course of the legal proceedings from $3m to $11.4m.

Also the U.S. Department of Defense and the Department of Veteran affairs have been increasing financial sponsorship of the American Paralympics efforts.  The Warrior Transition Units have brought  sports participation from 31% to 54%of former soldiers.

With more grassroots development of sports for people with disabilities, a change in attitude toward people with disabilities and increase funding for the Paralympics there is no reason that we shouldn't be first.

How ironic is it that the United Nations Convention on the Rights of Persons with Disabilities that we have not signed is based on our own ADA legislation. We have done the right thing with this ADA law but it does take time to change people's attitudes. But why so long?

I feel that standing up strongly for people with disabilities and with perseverance will eventually win people over. When people see what  people with disabilities can do attitude will change.  With opportunity and inclusion in society people will realize that having an impairments or a disability does not mean you cannot do! 

With modern technology like the fantastic prostheses for amputees, the wheelchair adaptations for racing, basketball, fencing etc. and of course hockey people with disabilities can do exceedingly well!

. Alicia Dana of the United States rides Alicia Dana of the United States rides

Alicia Dana of the United States rides

Brydee Moore of Australia gets ready to throw

 

Daniel Dias of Brazil prepares to compete in the men's 100m Freestyle - S5 final

Lia Maria Soares Martins of Brazil shoots

 

Japan win gold in the women's Team Goalball

And this year both the Olympic and the Paralympic teams were invited together to the White House to honor their accomplishments.

To see a video of the event go to:http://www.whitehouse.gov/blog/2012/09/18/behind-scenes-video-team-usa-white-house?utm_source=email182&utm_medium=text1&utm_campaign=olympi

Things are looking up!!

ellie

09/11/12

Permalink 12:42:00 pm, by eleanor Email , 694 words   English (US) latin1
Categories: Paralympics, Advocacy, Adaptive Sports

THE PARALYMPIC GAMES 2012

In a Triumph of the Human Spirit 4200 Athletes with a disability from more than 160 countries excited, thrilled and inspired the world in the largest Paralympic Games in history. In London England from Aug.29-Sept 9. the largest audience ever in it's 52 year history the 2012 Paralympics was indeed an important milestone.

With nearly 2.5 million tickets sold and increased broadcast to more countries than ever it gave it's cumulative audience of four billion watchers a new understanding of the Paralympics. Around the globe many cheering watchers were also  being awed and inspired by these athletes. And for many of those watchers a new understanding and appreciation of the effort and the commitment of these athletes to go on with their new life with disabilities.

These athletes were competing in 20 different sports.  But to understand the complexity of maintaining fairness to all athletes you need some understanding of the classification system.

As there are many different kinds of disabilities and severity in each person's disability there are separate classifications in each sport.  Each Paralympic athlete is  assessed before arriving at the Games by international classifiers.  In addition at the games they are  also reassessed as an additional qualifier.  Each assessment is made depending upon the disability and the intricacy of how much their disability will impact their sport.

What I found interesting was that the assessment also included the understanding of variability in symptoms in certain diseases like Multiple Sclerosis . For example Donna Ponessa the Equestrian Rider on the United States Team has Multiple Sclerosis and is paralyzed from the chest down.                                                    She uses a wheelchair and a ventilator except when she rides.

There are some who feel that these classifications are not always perfect. Some competitors have complained about where they were placed but the general consensus is that they are quite accurate.  Sometimes athletes feel that they are at a disadvantage to someone who looks ok and doesn't belong in their class like the American swimmer Victoria Arlen.

Victoria at the age of 11 contracted transverse myelitis.  Victoria Arlen - Paralympics                                           But now at 17 she won gold in the S61 Hundred M freestyle.

She was asked how do you recover and learn to live with your impairments from that kind of trauma . Her philosophy is inspiring. "Surround yourself with family and friends who will believe in you and encourage you to press on. What ever your obstacle - physical or anything else - face it, embrace it, defy it, and conquer it and  'Rock Your Disability! "                    

That motto was echoed by Dale Dedrick the U.S. Pair up Equestrian with Systemic Lupus. And she also commented in an e-mail  regarding the classification system, "before I wish to challenge someone else's disability however I would carefully considered the old adage of walking a mile in their shoes." 

There are so many inspiring stories and video's on these events world wide. Unfortunately we in the USA were not the recipient's of good TV coverage. ESPN our US Sports network essentially ignored the world's second largest sporting event The Paralympics. And NBC the media rights holder did not broadcast any events live. And there are only 4 one hour long highlight packages on it's  NBC -Sports Channel. This contrasts with 400 hrs.with 150 in prime time on Great Britain's channel 4. And most others countries had much more intensive coverage than we did.

However there were spotty excellent articles in the some newspapers like The NY times and Washington Post. The Washington Post did an article on Bradley Snyder a former Navy Swimmer who lost his vision when a bomb blew up in Afghanistan.http://www.washingtonpost.com/national/health-science/a-year-after-the-explosion-that-blinded-him-former-navy-swimmer-is-in-the-paralympics/2012/09/02/e98b2680-eff7-11e1-892d-bc92fee603a7_story.htm

Or on TV like the NBC' Today Show .had a piece on Alex Zanardi  former Race Car Driver now a Paralympic Gold Medal Winnerhttp://worldnews.nbcnews.com/_news/2012/09/10/13776821-race-car-driver-who-cheated-death-wins-3-medals-at-paralympics?lite#

And of course the Internet made up a big difference with the Paralympic Site's, Paralympic Sport TV,You-tube and others. So if you missed events there is still time to see them .

And the NBC Sports Network will air one of the highlight shows on the Paralympics on September 11 at 7:00 PM EDT that will include wheelchair basketball, swimming, track and more.

Don't miss it.

There is so much to talk about with the 2012 Paralympics that I'll be back with another blog covering them.

ellie

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Ellie’s Rules for Coping Well with MS and Disability
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