Disability

I was reminded the other night how much I have changed. How my priorities and my sensitivity to certain issues are not quite what they were 10-15 years ago.   I was out last night to wonderful fundraising event for our our local nursing home Wesley. I don't go out that much in the evening due to fatigue from MS. But now that I'm in this long remission with a few mild relapses I'm taking advantage of getting out at night.  So when my husband mentioned that he would love to have me join him in going to the Wesley fundraiser which was for transfer device's it was a perfect event!

I loved being out and talking to people which I have missed a lot over the past years but what I want to talk about in this blog is dependency.

I talk a lot about accessibility in my blog because that has been a continuing problem for me.  Having a disease like MS which has been functionally progressive in my case meant that to be out and doing I had to change my assistive devices and become more aware of my environment.  But along with the accessibility changes to make my life easier and fuller it was equally important to me to be able to be more independent.  I began to really  appreciate what Franklin Roosevelt said when he started the  March of Dimes, "anyone who has not lost the ability to physically do something can never understand what that little bit of independence to do it yourself means to someone".

I could have had my husband continue to push me  in my manual wheelchair or help me out of chairs and out of bed but that wasn't me. And I have become so much more aware that dependency rob's a person of the very essence of who they are.  That doesn't mean there aren't times and situations in which help is needed or help is something that makes what you want to do just so much easier.  Or that doing things with someone together is the best solution.

 

As a physical therapist seeing patients from the late fifties to the mid nineties I have had a certain bias.  When I was assessing or teaching patients or aides proper transfer techniques with or without a Hoyer lift my main concern was for the safety of the person doing the transfer and of the patient.

   At the time I thought I was being sensitive and that I had some understanding of what a patient might feel when they were told they needed more assistance which could include a Hoyer lift. But now after having had my own problems with transferring I am very aware of the emotions involved when more help is needed.  So when I saw the trac ceiling  transfer device being shown at the Wesley fundraiser my mind traveled to all the people I saw in nursing homes and home care when getting out of bed or a chair was a problem.

The safety of patients and health care providers transferring  patients have improved very slowly over many years. Even though as far back as 1898 the importance of safety in transfers was part of a nurse's curriculum. Since that time the use of proper body mechanics has always been stressed.  This was highlighted when the documentation of the musculoskeletal hazards to nurses' became apparent after world war II.  At that time early ambulation was shown to be advantageous to the soldiers returning with injuries.  And a walking program for the soldiers who were extremely unsteady was put in place. This increased the awareness of the important of body mechanics to prevent injuries when working with patients.  It was a specially apparent doing transfers for patients to be able to get them up to increase their endurance and strength to progress to being able to ambulate .

  However  statistics showed that body mechanics alone were not enough to prevent injury transferring a patient.  Actually nurses have been identified in the top 10 ranked occupations a work related Musculoskeletal disorders.

Before WW II many different ideas for transferring patients were tried out.  Like a patented shifting device.  This consisted of a thin flexible rollable platform which was placed under the draw sheet of a patient to assist them to transfer by sliding over the platform to a second support like a stretcher or wheelchair. Obviously it was very limited.  But with necessity being the mother of invention one of the ideas which finally was appropriate was a transfer device we now know as the Hoyer lift.

The Hoyer lift to the right is also called a sling lift. It was patented in 1955.  This has been used since then with some modifications over the years. This lift uses slings which can be placed under the patient appropriately  then attached by hooks and chains to the lift.  The patient is raised or lowered

manually by pumping the lever using  hydraulics to lift the patient. The platform on the bottom of the lift is widened or narrowed as needed to position the lift to raise or lower the patient. Then the lift is wheeled to the spot where the patient is being transferred to and repositioned to safely lower the patient.  Over the years these lift's have become smaller and easier to maneuver. Now there are battery assisted Hoyer lifts. A detailed history of transferring devices including the Hoyer lift and more modern lifts can be found on wikipedia  http://en.wikipedia.org/wiki/Sling-lift 

 

The latest transferring device  the Ceiling Track Systems {which is shown above at the fundraiser} that Wesley has purchased also use slings which are similar to those used in the more conventional lifts.  The advantage to this latest system is the ease with which the transfer may be done.  There is no positioning and repositioning of a large Hoyer lift.  The ceiling track is placed appropriately to allow the safe transfer.  One nice advantage is that the patient can use the control to transfer themselves.  This device can also be used in Home Care just like a regular Hoyer Lift can.  Again it is also a step up for the caregiver and the patient.

As I stated above when transferring a patient every bit of safety for the patient and caregiver is essential. But the patient's emotional needs should not be forgotten in the process. Finding ways like using the control goes a long way to decrease their feelings of dependency. 

Many kudos to Wesley! !               ellie

 

 

 

To know

There has been tremendous progress over the last 15 years for people with disabilities.  Since the passage of the ADA in 1990 more people have been helped and our communities at large have become so much more aware of the fairness it creates.

I remember talking to a member of my church congregation about the recent modification of the ADA and her response was I can't believe it took us so long. (see my 10/19/08 blog Bush signs ADAA into Law) Indeed I remember Senator Dole commenting at the 10th anniversary of the ADA  on how people in Congress make great speeches about the plight of the disabled but that they do nothing to help them get out into the community. And he went on to mention that they can't even get into the Congress or other important government buildings here in Washington.

But that is all changing! The MS Activist blog reported on May 21 the exciting news that a              http://msactivist.blogspot.com/search?q=  commitment has been made by the House of Representatives to make the house more accessible to the disabled.

On May 20 they released the CAO 2OO9 Disability Report. This report shows the changes that will be enacted in the House of Representatives. At a press conference on its release House Majority leader Steny Hoyer remarked: "last year we strengthened the ADA, helping the law live up to its original promise of inclusion for all Americans with disabilities.  Here in the people's house, we must live by the letter and spirit of that law-and what's more, we can be an example to all Americans who come here from all over a country and the world."  For more on this report go to : http://majorityleader.house.gov/in_the_news/press_releases/index.cfm?pressReleaseID=3053      

In this report they had major changes including ramps,enlarging doorway's and building an access for the disabled to get to the speaker's rostrum. But they also included the simple things that we encounter every day.  Like not putting the clutter of boxes in hallways that interfere with people in wheelchairs,walkers canes and of course the visually impaired..  Having handicapped parking sites near the doorway's that a person would use to go into the building.  And of course curb cuts close by.  Also curb cuts everywhere where street crossing are.

Now there's no doubt that the people with disabilities who work in the House  of Representatives glass is being filled on their access ability.  I hope that in each of their individual homes and in their immediate community and other places they access their accessibility glass if not full is filling also.

How about your accessibility glass? Is your glass half full or half empty?  Is your family putting  things in the hallways that makes it feel like you're going through a jungle gym to get by?  Do you have the railings,ramps, bathroom modifications,wide and easy to open doorway's in your home? And all the other things including visual,auditory and technological tools that increase accessibility in your own home?  It's so easy to say "Oh I can manage, I can get around that"  You don't want to be a bother. You don't want to spend family money unless it's absolutely past ?."I must have time".  I understand I've been there! But let me tell you that every time I have made an increased accessibility change.. I can do more ,I am less tired and I am a much happier person to be around!

So is your accessibility glass half full or half empty? Think about it. Do you need to make some changes too?

                                                                                    ellie 

 

"RETARD"

 

Most people don't think of this word as hate speech, but that's exactly what it feels like to millions of people with intellectual disabilities, their families and friends. Using "retard" as a term of derision is just as cruel and offensive as any other slur.

What It's All About
Spread the Word to End the Word is meant to raise the consciousness of society about the dehumanizing and hurtful effects of the R-word and encourage people to pledge to stop using it.  America is being asked to declare their support for more respectful and inclusive language, specifically that referring to those with intellectual disabilities.

Created by young people with and without intellectual disabilities, Spread the Word to End the Word is one element of Special Olympics' vision of a world where everyone matters, where everyone is accepted and, most importantly, where everyone is valued.

Leading the way in promoting acceptance of people with intellectual disabilities, Special Olympics opposes prejudice and discrimination, continuously working to dispel the negative stereotypes associated with this population ? the use of the R-word being one such stereotype. In a world that has worked to eliminate pejorative racial and ethnic language such as the "N word," among others, the R-word is gaining popularity.

March 31 young people across the country will lead local efforts to raise awareness and collect pledges on  www.r-word.org   from peers and the community to vow not to use the R-word. Actor and activist John C. McGinley, of the hit show "Scrubs," is helping with this effort by making national media appearances on behalf of the campaign.

                                                                                                                       Does it really matter what a person is called?  What's in a name? I think it matters very very much.  People have been called negative names forever.  People with physical disabilities were called "cripples" people who were mute were "dumb" and of course those with intellectual deficiencies were "retards".  Then we do have our ethnic negative names. As each ethnic group arrived on our shores as immigrants the negativity toward them took time to diminish.  They were called "japs,micks,kikes,spicks chinx's etc.".  African Americans have came in for a heavy negative term for centuries black people were negatively called "nigers" And there is unfortunately religious and cultural negative name calling too.

One at a time many of these negative terms have  become inappropriate thank goodness.  Names that have a strong negative connotation are powerful and when used they can hurt a tremendous amount.  One name that seems to linger on and is being used even more prominent lately is the term "retard".  And it is being used in an inappropriate derogatory way.

There have been current movies that laugh at people with intellectual impairments using the word "retard" in repeated negative connotations.  It seems like they can't imagine how that could be harmful and hurtful to people who are intellectually challenged.  Maybe they feel limited in using other sources they can make fun of.  I feel that that kind of humor is bottom barrel humor.  It's cheap and mean spirited.

For example a lot of people are talking about the movie "Tropic Thunder" that opened in theaters last month. One of the reasons that it is being talked about is that the characters use the term "retard" over and over. They use it the same way that kids do all the time, to jokingly insult one another. So, what's the big deal?  John Stephens who is a Special Olympic Athlete and a global messenger from Fairfax Va.wrote an article in his local paper I've included some of it here.

 

?Let me try to explain. I am a 26-year-old man with Down syndrome. I am very lucky. Even though I was born with this intellectual disability, I do pretty well and have a good life. I live and work in the community. I count as friends the people I went to school with and the people I meet in my job. Every day I get closer to living a life like yours.

The hardest thing about having an intellectual disability is the loneliness. We process information slower than everyone else. So even normal conversation is a constant battle for us not to lose touch with what the rest of you are saying. Most of the time the words and thoughts just go too fast for us to keep up, and when we finally say something it seems out of place.

We are aware when all the rest of you stop and just look at us. We are aware when you look at us and just say, "unh huh," and then move on, talking to each other. You mean no harm, but you have no idea how alone we feel even when we are with you. That is why I love being a Global Messenger. I work for days telling my dad what I want to talk about and he tries to write it down for me. Then we do it over and over until we have something that says what I mean. We wrote this letter the same way.

So, what's wrong with "retard"? I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the "in" group. We are someone that is not your kind. I want you to know that it hurts to be left out here -- alone. Nothing scares me as much as feeling all alone in a world that moves so much faster than I do.

You don't mean to make me feel that way. In fact, like I say in some of my speeches, "I have always depended on the kindness of strangers," and it works out OK most of the time. Still, it hurts and scares me when I am the only person with intellectual disabilities on the bus and young people start making "retard" jokes or references. Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary.

Last, I get the joke -- the irony -- that only dumb and shallow people are using a term that means dumb and shallow. The problem is, it is only funny if you think a "retard" is someone dumb and shallow. I am not those things, but every time the term is used it tells young people that it is OK to think of me that way and to keep me on the outside.

That is why using "retard" is a big deal to people like me.?

So what can you do ??    Sign the pledge, stand up to those who use the term retard and let them know why its wrong.  For more information go to http://www.r-word.org/

Ellie    

 

 

 

What a wonderful thanksgiving day I had.  Again we shared the day with my nephew his wife and their children.  We were joined by my brother-in law Bob from Massachusetts and my sister Naomi and her husband Mark who flew up from Virginia.  It's only been for the past few years that we have been able to do this.  My nephew and his wife moved nearby  in Queensbury so our trip up was just the appropriate distance.

A little help getting up the steps        Made It !!          

I had prepared for this long day for the past week by taking it easy.  I didn't go out to get my hair cut and colored.  I stayed home, took extra naps and did not do as much around the house.  I really do like my home to look nice and specially when company was coming.  But my brother-in law who would be staying with us is family and I felt the house was good enough.  What was most important to me was to have a good day with my sister and her family and mine. I had not seen my sister for two years.  And in these last two years she had had one serious illness after another.

My sister Naomi and husband Mark   Showing off the use of my sliding board 

I like everyone else needed some relief from the anxiety caused by the problem we are having with the economy and Iraq along with all the other world situations. This is when being with family on Thanksgiving is just so important. And even with this bad economy people found ways to go home and be with their family.

 

Pam CEO of 2008 Thanksgiving    The 2 assistants Casey and Mark jr.

We all complain about our country's political elections with its nastiness. And most of us are really spooked and worried about the economy and the world situation. But many of us do this worrying and complaining in the warmth if of our own comfortable homes and families. But invading our homes on the eve of Thanksgiving Day was the news that there were terrorist's taking over a major hotel in India and a possible coup was occurring in Thailand.  And when we woke up on Thanksgiving morning to watch the news the situation in India had progressively got worse.  And there was also a new report on the news about the terrible poverty in Haiti following the hurricanes we've had this season.

 

Mark carving and were ready to go

This year as we said grace and gave thanks for our wonderful feast there was extra meaning for all of us in giving thanks. We were very much aware of the discrepancy between our lives and many others in the rest of the world and in our own country.

 

And for our family we had more to be extra grateful for!  My sister looked and felt wonderful and I was really good too. So me in my electric wheelchair and she with her zippy  butterfly painted cane had a wonderful visit.  And each member of our family enjoyed visiting with each other and the generations conversed and it was a happy Thanksgiving Day. We extended our visit after a day of rest with lunch here in Saratoga and a visit to Celtic Treasures, the Irish shop on Broadway and then back to our home.

Here we continued gabbing over coffee while my older son showed the additional adaptations they'd made here in the home for me.  And my younger son showed them the adaptations he's made for me on the computer. Like voice recognition, an ergonomic keyboard, and an ergonomic mouse.

I was so pleased that he was able to show my sister and her husband this.  My sister has rheumatoid arthritis and her hands are becoming more affected by it.  Her husband Mark has lost all of his central vision due to Retinitis and my son had some idea's also for him specifically.  He mentioned that they build articulating arms that you can mount your monitor to.  Once mounted you can position the monitor on the side and move it to any position your vision would find perfect. They also tried out the keyboard and speech recognition and had fun with that. Of course this speech recognition was used to my voice. Hence there some humorous errors in the dictated words of the monitor screen. I hope everyone's Thanksgiving was as happy as our's was.

          ellie 

Turn on your TV this Sunday November 9 at  2:30 PM to NBC. There will be an in depth  documentary  about the 2008 Paralympic games held in Beijing China. This 90 minute documentary will be narrated by the NBC sports announcer Bob Costas.  This special which has been produced by the Emmy award winning David Michaels will take you on a journey into the lives of eight athletes (who are disabled) plus the wheelchair basketball team.

As you watch this special be prepared to be blown away by what you will see!  As David Michaels said in all his 30 years of covering Olympic sports events never has he seen such a rich tapestry of stories in competition. It reminded him why he fell in love with sports in the first place.

So tune in to see what our team TEAM USA did at the Paralympic games in Beijing.  They earned a  total of 99 medals with outstanding performances by  all.  The American athletes who will be profiled  are from  swimming, track and field ,wheelchair racing ,basketball and yachting.            

Enjoy, Ellie.