ELLIE'S BLOG on Living Well with Disability

On October 7 over 400 people attended the dedication of the statue of Helen Keller in The National Statuary  Hall.http://www.aoc.gov/cc/art/nsh/keller.cfm  This was the first child and the first well known person with a disability to be depicted there. 

Helen Keller (1880-1968) is a symbol and an icon for people with disabilities.  She was born both deaf and blind yet with persistence and with the use of Braille she was able to earn a Bachelor of Arts from Radcliffe College in 1904. She is much beloved by people with disabilities as she was an inspiring political activists for the disabled. She worked unceasingly to improve the lives of people who were blind and deaf. She played a leading role in most of the significant political social and cultural movements of the 20th century and was world famous as both a speaker and a writer. Her story most people know from the play "The Miracle Worker ."

                        " "Never bend your head. Always hold it high. Look the world straight in the face ."

This quote was Helen's own approach to life and the  advice she gave to a five year old blind child in 1932. For more information on Helen Keller and her extraordinary life go to: http://www.afb.org/Section.asp?sectionid=1    and for a site geared to children

         http://www.afb.org/braillebug/hkwelcome.asp

This year we also celebrate the 200th anniversary of Louis Braille's birthday. He was the man who developed the Braille Code which enabled Helen Keller to learn to read.  Before his development of the Braille code blind children and adults had no effective way to learn to read and write.  But thanks to Louis Braille and his development of the Braille Code the possibility for literacy ,independence and self expression was opened up to blind people everywhere.  http://www.afb.org/Section.asp?SectionID=86lind 

Braille was adopted as the exclusive means of teaching blind people to read and write in the United States in 1932. At the height of its use in the United States, it is estimated that 50 to 60 percent of blind children learned to read and write in Braille.

But now only about 10 percent of blind children in the United States are currently learning Braille. And the negative results are becoming apparent.

The reasons for the national decline are many, but the primary reasons are:

Mainstreaming of blind students, resulting in less time to learn Braille and to have less personal contact with  Braille teachers.  Teachers who were competent to instruct students in Braille were now forced to go from school to school instead of being under one roof with more students.

Increased technology, such as talking computers and electronic books. Which some felt could take the place of learning to read as they could impart information without students having to  learn to read.

More books on tape.  Again refuting that need to teach Braille as there was no need to learn to read itself.

Increased number of blind children born with additional physical or mental handicaps, often the result of premature birth. And a large percentage of these students were partly sighted .

                        There is a wonderful article explaining this so well in the Arizona Republic June 1, 2006 . The reporter interviewed Arielle Silverman. president of the Arizona Association of Blind Students. This is a must read . See link below .

 http://www.nfb.org/Images/nfb/Publications/bm/bm06/bm0609/bm060905.htm

Pressure from consumers and advocacy groups has led thirty-three states to pass legislation mandating that children who are legally blind be given the opportunity to learn Braille. The Individuals with Disabilities Education Act also mandates that the teams who help to write educational plans for students with disabilities presume that all blind children should be taught Braille unless it is determined to be inappropriate.

The National Federation of the Blind (NF, the largest and most influential membership organization of blind people in the United States, is taking swift action to reverse this trend.  Coinciding with the Louis Braille Centennial The National Federation of the Blind has announced specific action to address the education of America?s blind children so that every blind child who has a need for Braille will have the opportunity to learn it.

Below is the link to a special essay from a guest editor of JVIB to celebrate the  Braille Bicentennial.  The author  is a mother of a child who became gradually severely visually impaired .  She will take you on her journey with her child through school, college and her wonderful success .  She describes the problems including the emotional difficulties that happened along the way .  This is also a must read      http://www.afb.org/afbpress/pubjvib.asp?DocID=jvib030502

This blog was a real learning experience for me.  I have wanted to add visual and hearing loss problems and solutions on my blog of disability as I wanted it to be inclusive of all of us with disabilities.  When I saw these two events of Helen Keller and Louis Braille it was a natural.  But from it I just have learned so much.  In fact I will be doing a future blog on visual loss with adults and how they can compensate with technology and modifications to their environment and more.                                 ellie

The first thing to come to your mind would be the Special Olympics.  And indeed it is she who is responsible for the Special Olympics which is now in 181 countries and has made major contributions to the lives of millions of children who are Mentally Disabled and their families.

Looking back to 1968 when the first Special Olympics Games was held at Soldier Field in Chicago it's growth is phenomenal. In 1968 there were 1000 athletes from 26 US states and Canada. But there was only a crowd of fewer than 100 people watching.  This February in 2009 the Special Olympics World Winter Games were held in Idaho. 2500 athletes from more than 100 countries competed and were cheered on by 30,000 spectators.

Why did Eunice Shriver start the Special Olympics?  Very simply she had a sister who was mentally retarded. She loved her sister and  felt strongly that her sister Rosemary should be doing better. She had visited many mental institutions in the 1950s where people were warehoused like animals. She was horrified at what she saw and knew we should be doing better.  Being an athlete herself and knowing the sense of accomplishment that one can feel when one can do something well she felt it was a natural fit for people who are mentally disabled (mentally retarded).

As she was a woman with a big heart she was determined that everyone who was mentally retarded should have opportunity. And as she was also a formidably strong determined woman there was no stopping her!

She  originally started working with neighbors and local school children by doing a camp in her back yard. Every time she saw the joy and the sense of pride that these children showed it urged her on to expand the program which she certainly did. 

But her commitment was not just limited to the Special Olympics events. Her journey to be a champion of the mentally disabled started with her written article on Mental Retardation in the Saturday Evening Post. This article is widely credited with awakening us to the social stigma associated with mental retardation. In this article she discusses her family's coping with her sister Rosemary who was mentally retarded. And how this led the Kennedys to establish a Kennedy Foundation. This Foundation which she ran for many years established the building of centers for the mentally retarded.Centers for the care of retarded children, centers for diagnosis and treatment of the condition and research centers to understand the causes were all built across this country. This article is a "must read". http://www.eunicekennedyshriver.org/articles/saturday_evening_post

Eunice Shriver was definitely instrumental in President Kennedy establishing A Panel On Mental Retardation in 1962 . She was also in the oval office in 1963 when President Kennedy signed the civil service regulations making it easier for people with intellectual disabilities to work.  She has followed and been involved behind the scenes on all of the Disability Laws since that time making sure that mental retardation was also included as appropriate.

The two watershed laws that were enacted that are changing the life for the disabled were : The Education For All Handicapped Children Act in 1975 and The Americans With Disability Act in 1990 . Both of these together greatly expand the rights of all those who are Disabled .

Have you ever attended a Special Olympics event? These events are held in both winter and summer in communities all over our country. If you have an opportunity to attend one be sure you do. As you watch  you will see something dramatically transforming these  young people and those watching them.

Watch closley those who have been labeled unfortunate,handicapped,disabled or challenged perform in their event.  As you watch The Event and look at them I think you'll see something else.  You'll see what Eunice Kennedy Shriver saw , the joy of an athlete working to the of most of their ability.

Below are pictures of  our local community's Special Olympics Winter Event at the Spa Park in Saratoga Springs. 

I I believe Eunice Shriver's legacy will continue to live on in the Special Olympics as well  as increased opportunities for the mentally disabled to participate in a fuller life in our community's.  So do those who are participating in the fund raising run for the Special Olympics down my street every August. 

The athletic ones

-the youngsters

-mothers pushing strollers

and the Elders

 Thank you Eunice Kennedy Shriver               Ellie

for more information on Mrs. Shriver and The Special Olympics go to :

http://www.eunicekennedyshriver.org/bios/si

 On July 24 President Obama marked the 19th anniversary of the Americans with Disability Act to commit our nation to become the 140th nation to sign the first International treaty on disability rights.

For the 650 million disabled people in the world this was a very positive step.  And here in the United States our 54 million disabled people who are now protected under our ADA law applaud him heartily.

Joyce Nelson, the president and CEO of The National MS Society represented the International MS Community at the event.  She stated that, " by adding United States to the list of the 140 nations supporting this Convention the President has taken an important step forward to recognize the inherit rights of all people living with a chronic disease and disability".

In the president's speech President Obama remarked how  often he thought of his father in-law Fraser Robinson who provided for his family despite the challenges daily he faced with MS. To read his full speech which I think show's his deep commitment to people with disabilities go to http://www.whitehouse.gov/the_press_office/Remarks-by-the-President-on-Rights-of-Persons-with-Disabilities-Proclamation-Signing/   . And a for more information on the ADA go to http://www.ada.gov/ and for more information on the U.N. Convention on the Rights of Persons with Disabilities go to:  http://www.un.org/disabilities/default.asp?id=150 

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/