Living Well With MS & Disabilities: Ellie's Blog

This September very quietly a momentous event occurred in Washington . This event was both an anti-poverty and a civil rights protection for the disabled in our country. It insured that disabled people will be able to go out and work in an environment where they can contribute and succeed. What a wonderful thing that our returning wounded and disabled veterans from Iraq and Afghanistan will be coming home to a country that will be supportive of them!!

This Amendment to the American Disability Act of 1990 will enable our returning  wounded veterans with disabilities to be able to earn their living fairly and to participate in their community in the country that they fought for.

And what I think was so wonderful was that it was a unanimous vote in both houses of congress that passed the ADAA. On Sept 24,2008 President Bush was joined by his father Pres.Bush 41 and other's who had fought for this ADAA and the original ADA Bill. President Bush 41 was the President who signed the original ADA Bill in 1990.

 Unfortunately since the original ADA Law of 1990 the supreme court has exempted from the laws of anti-discrimination protections those with partial physical disabilities or those that can be treated with medication or devices such as hearing aids. This adversely effected people with epilepsy,diabetes,cancer,cerebral palsy,multiple sclerosis and other conditions. The supreme court argued in their rulings that they are not disabilities because they could be temporarily or improved with medication. These new amendments in the ADAA that are added to the original ADA will provide broad protections to more people with disabilities, overturning several Supreme Court decisions that narrowed the definition of disabled. Advocates of the legislation said the bill would confirm Congress's more sweeping intentions for the ADA.  

The original ADA act is widely regarded as one of the major features of civil rights legislation in the the 20th century. It ensured that people with disabilities had access to public buildings and accommodations thus giving them better access to the workforce. It also required hotels,offices,schools,parks and other public facilities to become accessible to people with disabilities. It seems hard to believe that not that long ago (pre 1990) people with disabilities were architecturally so disadvantaged and that we took so long to change it!!

These mandated 1990 changes by now are very familiar to all of us and largely go unnoticed: wider doorways, ramps next to stairs, handrails in showers and bathroom stalls to name a few. As as physical therapist and as a person with disabilities due to MS I can attest to the difficulty people with disabilities had pre ADA to be able to go out to work. Even to just go out into their community to have lunch or dinner out. Indeed this was a very basic Civic Rights issue!

The 1990 law recognized that in older buildings accessibility could not always be easily accommodated. Living here in Saratoga Springs with many older buildings I recognize firsthand the difficulty. But what's also interesting is that changes and modifications are still continuing to occur. I was talking to our Mayor the other day in Congress Park about curb cuts. I stated that I understood that legally except for Broadway and in front of public buildings it was not a legal case. And he remarked that as we are a walking city we should have curb cuts everywhere where it's appropriate. Thanks to curb cuts I can go with my family or friend downtown,to the library,to the farmer's market, to church in my electric wheelchair. We can walk we do not have to take the van with the lift.

  I do feel that the "able-bodied" awareness has been increased as they see more people out using canes,walkers scooters and wheelchairs now due to the ADA. And noticing the difficulties we can still experience feel that should be changed too.

If we were not "visible" before ADA how could people understand ??

If you visit or live in an older city with older buildings which are difficult for them to modify you can still be shut out of basic services or places you want to visit. Even many parts of the Capital itself still remain difficult for people with disabilities. And this is largely because the buildings historic designation makes it exempt from the laws strictest provisions. The architect of the capital, like the managers of other historic buildings has a great deal of flexibility in deciding which accommodations can reasonably be made for people with disabilities.

I remember listening to a speech at the ADA Convention on TV by Senator Dole (who was wounded in WWII). He talked about how proud he was of the consistency and the effort of so many to pass the A.D.A.in 1990 . He remarked that when he was elected to the Senate he started a fund to help the disabled make accommodations to give them more accessibility in their life . He was actually shocked at how poor the response was. In his speech he stated that the Senators and Representatives in Congress would give long speeches on the fate of the disabled but it never occurred to them that maybe they should make changes in the architecture of the buildings themselves so people with disabilities could visit the Capital like everyone else. Well changes are slowly being made.

An excellent example is Jim Langevin (D.R.I.) who is the only current member of the house who relies on a wheelchair all the time . He is a quadriplegic since a gun accident when he was sixteen.

He first went to Capitol Hill in 1984 (pre-ADA) as a young Senate Intern. At that time he found he could not get his chair through the doors of many of the meeting rooms or the capitol hill offices and it was a major challenge to find a restroom he could enter much less to take a shower in. But that did not deter him from returning to Congress in 2000 as a Representative from Rhode island. And he found that there has been change's after eighteen years!

  Since he took office he has watched the Capital's complex barriers come down one by one,sometimes at his urging.  He's found a sympathetic ear in Rep.Steny Hoyer (majority leader) who was an original sponsor of the ADA. And his colleagues have arranged to put ramps in his committee rooms, reconstruct the house so that he can more easily make a speech in the chamber and remove seats to make room for his wheelchair.

And now another long unattainable spot : The Speaker's Rostrum in the front of the house chamber. The house leadership announced they will reconstruct the built-in wooden chair on the podium and build a lift to provide accessibility for wheelchairs. Eighteen years after Congress passed the A.D.A. the move will allow for Rep.Langevin, the only permanently disabled member of the house, to preside over sessions for the first time. With the announcement the speaker of the house Nancy Pelosi said "our commitment to a barrier-free workplace sends an invaluable message to all Americans that the house will lead by example. "   For more information on the ADA and the amendment go to  www.ada.gov

For more information on Representative Langevin (And a little inspiration) go to http://www.jimlangevin.com/

The Torch is lit!!

The  troupe of disabled dancers celebrate it's arrival 

Let The Games Begin

China has done an excellent job of  welcoming the Paralympic team. In Beijing's brand-new airport the Government has spent $1.7 million to lower washbasins and handrails, add Braille signs and transform 214 toilets into the accessible variety. China has started to make progress for its 83 million disabled citizens including providing handicapped-accessible buses; adding wheelchairs at park entrances; installing elevators in the Forbidden City and building miles of bumpy, raised-patterned sidewalks for the blind. Conditions in Beijing are far better than in provincial cities and rural areas though.

In the Paralympic Village itself the entire complex meets the specified accessibility standards to allow athletes independent living conditions.  Tactile and accessible pavements as well as other facilities for people with a disability have also been installed in public areas . The serving tables were all lowered,the passageways were also enlarged and wheelchair traction services by golf carts were also made available. In addition at  the village opening a memorial wall was dedicated to the U.N. Convention on the Rights of Persons with Disabilities

In the 2008 games in Beijing we had two Paralympic athletes  competing in the Olympic games.

Natalie du Toit a swimmer who carried the flag for South Africa In the opening ceremonies was the first female amputee to compete in an able- bodied Olympic event.     

Natalia Partyka  from Poland also competed in the able-bodied Olympics. She was born with a right arm that ends at the elbow but managed to beat the Chinese at table tennis this summer. However she like Natalie du Toit was not successful in medaling in their able-bodied Olympic events .

  Oscar Pistorius the double amputee known as the blade runner because of his prosthetic legs won a legal battle in May for the right to run in the Beijing Olympics against able- bodied athletes. However he failed to meet the qualifying time in the 400.   He still has his sights set on qualifying in the next Olympics . But he won gold here in the Paralympics and he is  expected to win more.

There have been so many advances in technology that are so helpful in many paralympic sports. These are especially  apparent in the use of prosthetics for amputees' and wheelchair design especially engineered for the sport. Basketball,tennis racing and Rugby specifically.

But there are many sports that are not dependent or appropriate for technology.  In fact it could be a hindrance.  The first sports that comes to mind are swimming,rowing and sailing .Here athletes remove their prosthetic arms or legs before they enter the water or boat.

Jessica Long a swimmer from the united states

takes her 4th gold medal  

Erin Popovich of the U.S. team claimed her    fourth gold in the woman's 400 M. freestyle in World and in Paralympic record time

 Natalie Dutoit wins 5 gold medals

Rowers also remove their prostheses    

Gold medal U.S. Sitting Volleyball team                          

Judo

The saddle and other seating arrangements are assistive device's with a modification to stabilize the athlete safely in an appropriate seat a

Mclain Ward of the US, riding 'Sapphire' crashes the final fence of the equestrian individual show jumping final

 Britain' Lee Pearson wins his ninth Gold

     FENCING

These chairs are anchored with short cord to the floor to allow upper body movements yet prevent the athlete from falling forward

Power lifting- the lower body is anchored

 A well positioned Track and field discus thrower's

 Long Jump

Casey Tibbs of U.S. competing to the Right

Australia’s Libby Kosmala, 66, did not win a medal in the shooting events at Beijing, but she did compete in her 10th Paralympics. Kosmala has competed in several sports over the years and has won nine golds. And she says, she’ll try to be back for London 2012.

Now we are beginning to see sports where the use of prosthetics are needed and are visible

 Eric Bennett of the U,S.

Lear Chuck of the U.S. 

Campbell of USA Wins Pentathelon

Standing and sitting competing in table tennis

We're are now coming to the sports that require Speed.  A prosthetic leg that will allow a man to run 100 meters under 11 seconds . A wheelchair so light and responsive that a basketball player can weave and turn through defenders with speed yet remain durable in a physical game. Or a racing chair which a marathoner will complete more than 26 miles in less than 90 minutes . The athletes below are using these technologically advanced prosthetics and wheelchairs but the skill still remains with each individual athletes to make the most of this.

Joy in achievement of goals

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By: Associated Press

Oscar Pistorius of South Africa (right) runs ahead of Ian Jones of Britain (center) and Jim Bob Bizzell of the United States during the men's 400m T44 final. Pistorius won the gold medal

Visually impaired runners work with  guide runners who are equally fast running togeather holding a tether. In field events they must have precise timing with coaches providing the verbal cues. Lucas Prado of Brazil, left, with his guide reacts after he won in the men's 100m T11 final competition

 Vlfredo Cuadrado (left) of Spain fights for the ball with Gustavo Maidana of Argentina in a five-a-side soccer match during the Paralympic Games at the Olympic Green Hockey Field

Simple Cycle

Cycle duet

Chariots of Fire

Here They Come

Accident !

Matt cott pressuring Aussie's shooter

 championship game

 US Woman's Basketball beats Germany for gold

Changes in wheelchair's for tennis players came after basketball and racing but they now have their own wheelchair designed to meet the needs of the game.The chairs are very efficient and allow easy fast push and turn.

 Forward Smash

 Serve

 back return

Esther Berger from the Netherlands is her countries best wheelchair tennis player. She had not lost a match in the Last 345 matches she has played . However she did lose her first here.But she came back to win Gold.

Bronze-medal winner France's Florence Gavelliern (right), the Netherlands' gold-medal winner Esther Vergeer (center) and silver-medal winner Korie Homan celebrate their win at the women's wheelchair tennis singles award ceremony at the 2008 Paralympic Games

nt size="5"> Quad Rugby, aka wheelchair Rugby, aka Murder ball.  Murderball is also the name and subject of a terrific documentary you can find at the library.  Oh what those quadriplegics can do!  You've got to watch them go...  (And they don't wear helmets no matter what.)

US wins gold in Wheelchair Rugby

Closing Ceremony

Artists perform at the Closing Ceremony of Beijing 2008 Paralympic Games in the National Stadium, also known as the Bird's Nest.

Of course there were great fireworks at the Beijing 2008 Paralympic Games Closing Ceremony.

And the torch is extinguished for another four years

The one big difference between the Paralympics and the Olympics was the overwhelming attendance at the Paralympics.  The Birds Nest and the Water Cube was filled with enthusiastic crowds, cheering on the athletes as they performed with pure joy at what they could do!

 I was out in the small lane (alley) behind our house a couple of weeks ago. My neighbor was there with her three year old son . He had to show me how good he could ride his tricycle.  And then he wanted me to watch how fast he could run. He was just so pleased with himself and glowed with my praise!  I had been watching the Olympics at this time and thinking about movement and why the Olympics have lasted so long and the importance they have not only to the individual athlete but also to the rest of us too.

Movement of the body in sports or other activities is something that is universal. Our earliest memories of movement and the praise we received for our progress in the basic milestones from raising our heads to running fast. So watching the superbly,fluid and controlled movements of the athletes bodies in gymnastic,diving, running, swimming and other events allowed us to relate to them. We could understand and feel in our gut the difficulty of their skill and admire the ease with which they appeared to perform them. And of course we related much more when the activity was something similar to which we ourselves  participate in.

No wonder the Olympic games every four years have been so successful. And how natural for us to develop the Paralympic's too!

Go to www.ParalympicSport.TV or www.universalsports.com they both carry them live or on video.

But relating to the athletes in the Paralympic's can be a stretch for some of us. I think I can honestly say that I am much more aware of that this year.  As the Paralympic's are not covered by the television stations I had watched very little of the Paralympic games until 2 years ago when the Winter Paralympic's were on the Internet.  Being a physical therapist I could watch the athlete's perform in their event with their disability and relate to a degree.  Some of my feelings were of both amazement and appreciation of how they adapted but there was none of that gut feeling.

But that was not the case for me with the Beijing Paralympic's . From the beginning of the opening night ceremony I just wanted to cry!  But it wasn't from sadness due to their disability it was more from a sense of joy that they were there and that the world recognized them and that they should be there too.

In the opening ceremonies the weaving of those with disabilities into the artistic program was outstanding . The participants in the  program were the disabled from all over China.  From listening both to the pianist and to the singer who were both blind to the dance using sign language by those who were deaf. And then onto the ballet which included a young girl in a wheel chair who had lost a leg in their recent earthquake also using her arms to the music of "Bolero" .

Then as the athlete's proudly came in using their wheelchairs,assistive devices as well as walking independently I watched not just with amazement but also hope.  The hope that they were representing a new age in China and in the World that there was a place for people who have a disability . 

I understand that able-bodied people cannot fully relate to these athletes from having an understanding with their own bodies. But I do feel that they can relate with an appreciation of how hard these gifted athletes work as well as amazement of how they compensate. And thru their own awareness of how technology is helping them will increase their awareness of how technology can help people with disabilities compensate so much better.

The New York Times recently posted a fascinating article on a Paralympic wheelchair basketball player who's engineered some of the best athletic wheelchairs available.  Check it out at http://www.nytimes.com/2008/09/09/sports/othersports/09wheelchair.html It's fascinating.

But I personally feel in order to do this able-bodied people have to  move from being uncomfortable around a person with a disability and feeling bad for them to accepting that there are people with disabilities. And then make the shift in their thinking of the disabled to what they can do with the right environment and tools.

As Natalie du Toit says: " The tragedy of life does not lie in not reaching your goals ;

The tragedy of life lies in not having goals to reach for".

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The first record of the Olympic games was in 776 B.C.in Greece. In them a naked runner, Coroebus (a cook from Elis),won the sole event at the Olympics, a run of approximately 192 meters (210 yards). This made Coroebus the very first Olympic champion in history. These games grew and they continued to be played every four years for nearly 1200  years. The games were abolished in 393 AD by The Roman Emperor Theodosius 1 a Christian because of their pagan in influence.

But 1500 years later Pierre de Courbetin a young Frenchman Influenced by the Franco-Prussian War of 1870 began their revival . He recognized the value to the youth in countries like Germany that were emphasizing physical activities. He felt that the youth in France, England and the United States would benefit from sports activities. And further that it would benefit the cause of peace because they could compete with each other in the sporting events not war. Sadly it didn't stop World War 1, World War 11 and other smaller wars  like Korea and Vietnam. But in the cold war with the Soviet Union I think it was a positive force. I remember watching the Olympics and cheering on our nation to beat the Soviet's. And in the 1980 Olympics when our hockey team beat their championship team up in Lake Placid, N.Y. the whole country roared it's thunderous applause.

Now we move on to the Paralympic games. The  Paralympic Games started in 1948.  In England Sir Ludwig Guttmann organized a sports competition involving WW11veterans with spinal cord injuries in England .The flagship sport became wheelchair basketball. Wheelchair basketball games in America began approximately at the same time .The first games were formed by the California and the New England chapters of Paralyzed Veterans of America . For more information check the website below. http://www.abilitymagazine.com/Paralympic_Military.html 

Four years later competitors from the Netherlands joined the games and an international movement was born . In Rome in 1960 athletes with disabilities were officially organized and the name of Paralympic's was given. In 1976 in Toronto more disability groups were added. Today the Paralympic's are an elite sport event for athletes competing in 22 different sports from six different disability groups. Which are : Amputation, Cerebral palsy, Visual impairment, Spinal injuries,The Others and Intellectual. And within these groups there is a classification system for each athlete with their level of disability for each sport.  This is to make competition fare. However,they emphasize their athletic achievemeint rather than their disability . And since 1988 Paralympic games have been held in the same venue as the Olympic games.    The Military is still involved in training paralympic athletes see the video:    http://video.on.nytimes.com/index.jsp?fr_story=f1f4c3004cad46e5bab3dbadabe56865b4121455

In the past A few athletes with disabilities had completed in the Olympics . George Eyser an American won three gold medals in gymnastics with a wooden leg at the 1904 saint Louis games.

Neroli Fairhall a paraplegic from new Zealand competed in archery at the 1984  Los Angeles games. Neroli Fairhall was the first paraplegic to compete in the Olympic Games.

Maria Runyan a legally blind runner from the united states made the final of the 1,500m and 2000 Sydney games and participated in the 5,000 meter at the 2004 Athens Games.