ELLIE'S BLOG on Living Well with Disability

This is such a wonderful time of the year.  It's a time of hope and love, a time where we can be with family and friends that we haven't seen for while.  So as we gather  in the various events with family or friends we have to remember those that are left out. Be sure to contact those that couldn't attend it will mean a lot to them.

But don't forget there can be some who are attending but are really not as totally present as they could be. I'm referring here to people with a variety of disabilities.  Some mild some more severe, some noticeable some less noticeable and some quite well hidden .

                    HEARING IMPAIRMENTS

Starting with loss of hearing I'm reminded of the visit we made to older friends we hadn't seen for quite awhile.  We were sitting around the table talking when suddenly Steve said," I can't hear a word you people are saying".  We sat there at first shocked then of course that's why he was very quiet.  I was so glad that he said that as it gave us a chance to talk about what you can do to include people who have a hearing loss.  We asked him what could we do to make it better for him. And  he said ,"you're talking too fast and not loud enough".  I also remembered from my experience as a PT in dealing with people with hearing loss that it is good to look directly at the person. This way he could read my lips and my visual expression so he wouldn't lose the nuance in the spoken word.

We continued our visit trying to keep in mind these four factors. Speak slowly, clearly and loud enough to be heard and look at the person directly. And it worked very well.

Ten Commandments for Interacting
With Hearing Impaired Persons

I.          Thou shalt not speak to the listener from another room.

II.        Thou shalt not speak with your back toward the listener or
            while the listener?s back is toward you.           

III.       Thou shalt not speak as you walk away.

IV.       Thou shalt not turn your face away from the listener while
            continuing to talk.

V.        Thou shalt not speak while background noise (water 
            running, radio or TV playing, people talking, etc.) is as or louder than your voice.

VI.      Thou shalt not start to speak before getting the listener?s
           attention and while the listener is reading, engrossed in a TV
           program, or otherwise preoccupied.

VII.    Thou shalt not speak while your face is hidden in shadow.

VIII.  Thou shalt not obstruct a view of your mouth while speaking.

IX.     Thou shalt not speak rapidly or by shouting.

X.       Thou shalt be patient, supportive and loving when the
           listener appears to have difficulty comprehending what has
           been said.

And some basic rules for people who are Hearing Impaired to help them in their ability in lipreading   http://www.afthi.org/ 

                       VISUAL IMPAIRMENTS

And when I think of someone with vision loss my brother- in-law is the one that first comes to mind. He has lost his central vision due to wet macular degeneration. When he visits he can see you peripherally but not if you approach him face on.  Sitting in our living room he takes out his special magnifying glass to be able to read. But this way he can share with us his thoughts on the article we're reading and talking about.

But there are many people who don't have as severe a visual loss but due to other medical reasons wouldn't be able to read it easily either. They don't have their close up glasses or the print is just too small even with their glasses. Or the light is not bright enough or it's too glary to read by. So they just pass the magazine along without reading and not being able to to participate in the conversation about it.

If you think you know one of your guests probably could have a problem with reading close up don't put small print magazines or coffee table books on your coffee table.  And if that's still a problem and people forgot to bring their reading glasses you can always purchase close up glasses in a drugstore. They are available in different strengths.  I myself have three pair with three different strengths depending on my eyes at the time.

And be sure that a person with low vision is sitting where there is no glare and very good light which  they can shine directly on the page.Do not leave things where they can be bumped into or tripped over. This can cause a visually impaired person to fall and hurt themselves, or damage the thing they have fallen onto.  Remember to have sufficient light in the hallways,steps,bathrooms and their bedroom if they're staying over. Remember no monochromatic table settings.  Contrast is essential for people with visual loss. 

HINTS AND TIPS FOR INTERACTING WITH THOSE WHO HAVE VERY LOW VISION OR ARE BLIND.

• Speak in a normal tone of voice. People with vision problems usually have normal hearing.
• Introduce yourself ? recognizing voices can be difficult for some people.
• Speak directly to a person with impaired vision. Most people can answer for themselves.
• Rather than using gestures and hand signals to convey instructions, directions or size, describe the information.
• Be clear with your instructions. Many people use "right" when they mean "yes"; other words like "here", "there", or "this" are vague and don't give enough information.
• It's o.k. to use words like "look" or "see", as they are part of normal conversation. People with impaired vision use these words themselves.
• Let a person with impaired vision know you are leaving so that he/she won't be left talking to him/herself.
• Last but not least, treat people with impaired vision as you would want to be treated.

If you go out to the local restaurant remember they will need help with reading that small print menu in low light. And if you go to church ,temple or mosque ask for a large print copy of the service sheet ands hymns if they have them.

An excellent resource is the site of the American foundation for the blind.  They also have a wonderful section on senior citizens which can be very helpful. Their site is : http://www.afb.org/ 

Have a wonderful holiday season             ellie

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

Having multiple sclerosis and limited physical ability has limited one of my favorite activities namely gardening.  I've used  garden pots on our deck and window boxes around our front porch.  We also have raised beds where you can sit on the edge to garden.  Last year I also had my family add a window box on our bridge-ramp. I was very successful in raising lettuce and herbs in it.  So this year I was inspired to have a raised bed devoted totally to salad greens.  And to use my ramp- bridge window box strictly for herbs.  When I asked my two sons if they could make one for me per usual they did a bang up job. Below is my sons description and pictures of the process.

There were several sources for raised table beds on the internet, which started us in the right direction. The main consideration with this project was accessibility. The lettuce and greens had to be reachable when standing or sitting. For planting, weeding, and most importantly, picking.

                                                                                                              We determined the usual three foot width could be stretched to four foot to accommodate a large 4 foot by 8 foot bed. This was just about right for a family that typically consumes a head or two of lettuce every day! Since I had a pair of leftover 2x6 by 10 foot lengths laying around, we decided to supersize the experiment and go with a 5x10 foot ?lettuce farm.? Probably overkill for anyone growing for less than 6 (or 4 salad lovers). The five foot width proved completely workable for my Mom, but she is also very tall with a long reach. We measured her in her wheelchair, and then standing and reaching to come up with what we figured was a good working height, that allowed room under the large sides of the bed for her wheelchair.

Next set of considerations were wood stock. We had some pressure treated 4x4's around to serve as our legs. We decided not to use pressure treated for the bed itself due to sketchy reports that the chemicals are not the safest for growing consumables in. Flowers and ornamentals would probably be okay, and they would probably last longer than untreated. However, we put 4 layers of exterior (latex) paint on primed wood and this should give us some several years of use, at least. This is a working (and this year flourishing!) experiment, so we're making it up as we go to some degree.

Legs. Four in the corners, and two in the middle of five cross support pieces we put under a bottom made from galvanized wire mesh. We could get 1/2? holes for the length we wanted, though I thought 1/4? grid could have held in more dirt. This would give us plenty of drainage, and we added gravel and leaves to the bottom before we added the dirt. So far, perfect drainage and nothing major has dropped though the holes.

  .

Filling a box this large (when we upgraded from 4x8 to 5x10 we upped our square footage from 32 to 50!) is going to require a lot of top soil and organic matter (kitchen compost and composted manure for ours) We had a raised bed we were taking down filled with good composted top soil, so we made a ramp out of a 40' ladder (20 feet x double thickness) and some planks and used a wheelbarrel to move the ton or so of topsoil from the ground up three feet into the lettuce bed some twenty feet away. Probably saved an hour or two of time and extra shoveling (we did more than enough as it was!) this way. Not that we didn't have to stay in synch as two of us each pushed a handle up the ladder from opposite sides of the ladder. But then we dropped down a smaller plank over the edge of the bed and dumped load after load from one end until we filled her up.

A smaller bed wouldn't need this extra step, but depending on where the topsoil is coming from, would probably help out anything over a 3x3 foot area. Even several boxes to step up the wheelbarrow could also be a way to make things easier and faster. Our last step was shoveling on a bunch of compost from our compost bin and spreading several bags of composted manure and working it into the soil with shovels.

Then came planting and like magic we've been amazed at the growth of lettuce and have eaten fresh delicious salads (and in wrap sandwiches) non-stop for the last month and a half. And this first planting is still going strong, and we'll be doing fall crops right up until the snows fall. And it has been super easy for my Mom to work with. And I will never do a salad bed at ground level ? ever again! Picking lettuce this way cannot be beat. Plus it seemed to keep the garden riff raff like slugs, bugs, and rabbits out of it. All in all, under my Mom's diligent care, this project has been a rip-roaring success. You just cannot beat a fresh picked salad, and the satisfaction of growing it yourself. Try one! And I'll try to answer any questions if I can. You can do it, too!

Feel inspired? It's well worth it to have the ability to garden at the right accessible level for you. Hope's this info helps!                                              ellie