Tuesday, March 23, 2010

Warm Springs, GA and Changing Attitudes

What many people today do not know is the role that Franklin Roosevelt played in changing the attitudes of people towards those with disabilities.  We didn't know much of that ourselves until yesterday.

Yesterday, during a visit to Georgia, my husband and I toured the "Little White House" and the institution that Franklin Roosevelt purchased so that those with polio could obtain low cost treatment including physical therapy in the warm springs of the area.  We saw the (now empty) pools where Roosevelt swam and socialized with his fellow polio patients, and the cafeteria where he sponsored annual Thanksgiving dinners.  Even as President he came to Warm Springs to recharge, and died there on April 12, 1945.

It was sobering to stand in the bedroom where he passed away from a stroke.

The "polios" were "his people" and Franklin Roosevelt could not do enough for them.

What people don't realize also is that by befriending many of the natives in the Warm Springs area, Roosevelt saw what needed to be done during the depression.  Roosevelt led initiatives that lead to rural electrification and research that led to better farming practices.  And, by starting the March of Dimes, Roosevelt helped to fund the research that lead to the modern polio vaccines.

Roosevelt also designed early hand controls on automobiles.  His hand-controlled automobile is on exhibit at Warm Springs.

What people also don't realize is why Roosevelt had to purchase what became the Roosevelt Institute.  People were so deathly afraid of polio that its victims (who were called "polios"-the ultimate in the person being the disability) were little more than outcasts.   So when Roosevelt coming to Warm Springs led to other polios coming, the nondisabled guests fled.  If Roosevelt had not purchased what had been the Meriweather Hotel, it would have closed.

Roosevelt fought and changed attitudes towards polio and polios but during his public appearances, to his dying day, he had to disguise the fact that he could not walk or stand without assistance.  This would be unheard of today when using a wheelchair is a method of mobility, not a badge of shame.

This institution is now owned by the State of Georgia.  While treatment of polio is not its primary objective anymore, it treats people with many physical disabilities, including spinal cord injuries.

Will there ever be a "Warm Springs" for people with autism?  Who knows what the future will bring.

Sunday, March 21, 2010

Inappropriate Comments

This is a small thing as small things go with autism, but for some reason this really got under my skin.

Saturday, we were invited to attend a family birthday party (for an "over the hill" out of town relative in town to visit) and Bil came along.  To my mother in law's credit, she has always taken Bil to these kind of gatherings.  He sits there, not interacting with anyone, but he is there and I have to believe he is observing, and observing a lot.  She has not hidden him away from family, even back "when" such behavior would have been fully acceptable.

Well, as we were enjoying ourselves Bil blurts out to me, "When are you leaving?" [to go home, not leaving the restaurant].

This is not an unusual question for Bil.  I know this is how he controls his environment.  If we visit, he has to know when we are coming.  And, he has to know the exact hour of our departure.  He won't rest until he gets the information.  I've taken to telling Bil "I don't know", which many times is the truth, and he runs to my husband to ask him the same question.

For some reason this has annoyed me more and more as the years pass, at least the leaving part.  Because the point is, many times we don't know exactly when we are going to leave.  We know the day, but plans change, and I feel that Bil has to start dealing with uncertainty.

So I told Bil I didn't know.  So, of course, he asked my husband, who looked totally exasperated.  And I snapped.  I turned to my mother in law, who was sitting at our table, and I said (not too kindly) "Bil has to learn to deal with uncertainty.  We don't always know when we are leaving, and he has to know we can't always predict the exact minute we are going to leave to return home." [we live about 3 hours away from them.]

My mother in law, who I imagine has heard more than her share of critical comments directed at her son or at her, didn't take this very well.  "You know he didn't mean harm by that" she ended, and I spat back at her "Bil is going to have to learn he can't ask this in a public place.  It implies that he can't wait for us to leave and one day someone is going to take that question the wrong way."

As the party was starting to wind down, we were looking at the weather outside with some anxiety.  We were going to have to drive back about 30 miles in the midst of a nor'easter, and the rain was starting to come down heavily.  The wind had already been going for the better part of a day. We knew trees were down everywhere and we knew the parkways in that part of New York tended to flood easily. (they were built paralleling rivers, for some reason.)
It certainly would have been appropriate at that point to ask when we were leaving the party.

Well...I know I have to learn to pick my battles.  Sigh.

Thursday, March 18, 2010

The Rainstorm

Many of you have heard of the major rain and windstorm that hit the Northeast on March 12/13.  This hit where my mother in law and brother in law live, so we got to be eyewitnesses to my brother in law coping with wild weather conditions.

We ended up having to drive with him about 30 miles (each way) in high winds, and at one point we were in a traffic tieup due to a tree that had come down partially across the road (it didn't look like any one was hurt - thankfully).  We asked him if he had been frightened and he told us he had not been.

Well, I sure was.  There was another tree a little further up the highway, that had just barely missed coming down on the roadway.  The highway was lined with broken trees and broken branches.  It was a sight like none I had ever witnessed, and I grew up on the coast.

The power also went out, and we ended up going to McDonalds for breakfast.  As we were finishing up, the power went out.  Everyone in the restaurant laughed-it was obvious that this was part of their everyday life.

For two nights, we fell asleep to the constant howling of wind.  

I'm glad everything turned out well.  The power failure (actually there were two, but we weren't home for the second one) only lasted a couple of hours, so it didn't get too cold.  We heard the crack of a tree but didn't see any trees down on my mother in law's property.  Bil, who can be very anxious about thunderstorms, didn't seem fazed (but that may have been because it wasn't a thunderstorm-just a nor'easter).  The flooding didn't extend to where they live.  So, as things go, this story has a happy ending.

Monday, March 8, 2010

Life as a Polio

I am switching gears a minute here to talk about another disability.

Years ago, one of my husband's cousins married a young lady who had contracted polio as a child.  With great interest then, I found at the library a couple of years ago a book called "Warm Springs:  Traces of a Childhood at FDR's Polio Haven" by Susan Shreve.  This book was so fascinating that it lead me to take the HBO movie "Warm Springs" out of the library this past weekend - and I plan to visit the Warm Springs historical district later this year.

Why is all this so fascinating?

Well, for the FDR movie especially, the movie showed so clearly how society felt about, and treated, people with disabilities.  FDR contracted polio (actually, there are doubts now about whether it actually was polio, but the experts of the time thought it was) in 1921.  FDR refused to have himself photographed in his wheelchair.  I don't know if the scene in the movie showing a young man with polio, trying to get to Warm Springs, dumped into a baggage car without food or water and arriving at Warm Springs half dead, was true, but it was certainly believable.

Elsewhere in the movie  Roosevelt makes an offhand mention of the children he hopes to treat at the Warm Springs, GA facility that by now he has purchased, to the effect that these children have been expelled from school by their districts due to their polio.  We take IDEA for granted so much now, thanks to people like Franklin Roosevelt.

The car the actor playing Roosevelt drove in the movie was the actual car (with hand controls) driven by Roosevelt.  I wonder if it was the first of its kind.  Imagine, a person with disabilities being able to drive - to be able to shed their "helplessness" for a full life.

Meanwhile, people with polio are called "polios"-the disability defines them totally.

Moving forward to the Shreve book, we find ourselves in the 1950's, with Shreve's generation the last generation to have to fear polio each summer.  She has the Roosevelt-founded March of Dimes to thank for her family being able to send her here at little or no cost for treatment.  Yet, what she ends up going through during her three years here in the name of treatment almost sounds like something out of the middle ages - as loving and caring the staff at Warm Springs are.  And she is still....a polio.  But by now, these children wear the name as a badge of honor.

Incidentally, polio is not done yet with those who got it as children. There is something called "post polio syndrome" and I can only hope my cousin's wife is spared it.  Like chicken pox, it never leaves the body.

How ironic that vaccination, which some (and I'm not going to get into this pro or con) blame for the massive increase in autism, almost completely wiped out the scourge of polio.

Sunday, March 7, 2010

Temple Grandin

Last night I got out an HBO movie from the library called "Warm Springs" about Franklin Roosevelt's struggle with polio and the attitudes surrounding people with disabilities back in the 1920's.

In researching that movie, I came across reviews of a more recent HBO movie called "Temple Grandin:  Her Real Life Journey".  If people are educated about autism, a name that will immediately come to their mind is that of Temple Grandin, who is arguably one of the most influential people in the field of humane food animal treatment and slaughter - and who has autism.  It may not be an exageration to call Ms. Grandin the "Helen Keller" of the 21st century.

With each step she takes, life holds the chance of change for people such as my brother in law.

What is ability vs. disability, after all?

I knew this movie about Ms. Grandin had been made, but I do not have HBO. I hope that the movie comes out soon in DVD, so I can view it.  I read the reviews on the HBO website, and I want to see it now more than ever.

So...what was going to start as a posting about changing societal issues in the 20's turns out to be a posting about something else entirely.  Fear not, I will post about the Warm Springs movie in the near future.

Tuesday, March 2, 2010

Aging Issues, Again

My mother in law ended up getting her power back several hours after I blogged about it. (see last post.) In fact, Bil was the one who noticed it was on and gve us the exact time; by then my mother in law had fallen asleep.

I'm glad this had a good resolution but it reminded us of this issue that comes up every winter without fail.  Power Failures....she sits in the cold and dark, without a phone, or with a cell phone rapidly losing its juice, with my brother in law there also.  I wonder what he thinks.  It is so hard to find that out.  Is he terrified?  Or does he just accept it as part of his greater routine?  I suspect it is a little bit of both.

I want to mention here that we have talked to my mother in law (more than once) about her moving up here with bil and she doesn't want to do it.  Her reasons are valid:  she would be moving away from her friends, she doesn't like the weather up here (well yes, we do get a lot more snow), and she has relatives somewhat near-by that I mean if you drew, say, a 50 mile radius around her house, there would be a number of nieces and nephews.  Up here she would only have us and my other brother in law, and then no one for maybe 130 miles.

And, she has lived in that house for almost 50 years.  And, the area is familiar to her.  I could go on.

 But in an emergency like this, can she get help?  She certainly can't get help from us.  What if the power had been off several days?

Also, her refusal to seek other housing options for bil has been quite the sore point, and I intend to blog about this at another time.  I don't think bil can help her in quite the ways she needs it, even if she gets a lot of security with him there and if he could get further training in how to do things.  And, I know taking care of him gives her purpose, and strength.  I hope she doesn't think she is worthless though if he goes to live somewhere else.  And, he is going to have to, because - as all of us are - she is mortal.

He is going to have to leave her some day-unless she (by leaving this Earth) leaves first.  And then what?