Ellie's Blog on MS and Disability in general

Eighteen years ago on July 26, 1990 the Congress unanimously passed the Americans with Disabilities Act and it was signed into law by President Bush.  This was a wide ranging piece of legislation which was intended to make American society more accessible to people with disabilities.  It covered five areas of American life . These areas were: employment, public services, public accommodations, telecommunications and a miscellaneous area.

To be under the protection of the ADA an individual had to be  mentally or physically impaired substantially in one or more of his or her's major life activities .

Over the years challenges have been made to obeying this law. But more recently there have been more challenges that have been brought to the Supreme Court. Unfortunately the Supreme Court Has been very narrowly interpreting this law. This narrow interpretation has resulted in many people with disabilities left with no protection. The house of representatives passed by 402 to 17  restoration bill replacing the rights of people with disabilities that had been lost. And the new wording in the bill should not lead to the current problem in interpretation. The senate will bring this up in September and then it will be signed by our current president for our newly elected president . This is a positive turn to a very discouraging situation for people with disabilities and their families .

  I feel this is a good time to review briefly just what the 1990 ADA Law legislated.

In Employment (Title 1) Businesses were to provide reasonable accommodations to protect the rights of individuals with disabilities in all aspects of employment.This requirement could be a simple thing like lowering or raising a desk or a different kind of computer keyboard .

In public services (Title 11) state and local government and transportation could not deny services to people with disabilities . They were to have equal access to all programs or activities . And all public transportation had to be accessible to people with disabilities. A good example is our local CDTA which has an excellent lift to bring anyone with a disability easily onto their bus. Another example is the elevator to the upper floors in city hall .

In public accommodations (Title 111) all new construction and modifications had to be accessible  to individuals with disabilities. For existing facilities barriers to services had to be removed if readily achievable . Public accommodations include facilities such as restaurants, hotels, grocery stores, retail stores etc  as well as privately owned transportation systems.

From my perspective I feel this Title111 has been the most encompassing and easily recognized . I remember an incident before the ADA was passed  I had a patient who had had a stroke and was ready to get out of his house with his wheelchair . He could walk only a short distance in his home.  I suggested using a ramp then he could get out of his house easily. He laughed at me saying," What for? I could not get in anywhere, I can't climb steps in my wheelchair.  This situation should no longer exist. Of course people with disabilities have to have the resources to build a ramp and to buy a wheelchair for use outside the home if their insurance like Medicare does not pay for it. ( see my feelings on this in my blog on Electric Wheelchairs and Medicare .)

But once out of their homes there are curb cuts, ramps to get into facilities that are not on the street level, elevators in places that ramps would not be appropriate. Grocery and other stores have wheelchairs or scooters with baskets to make it easier for people. Recently our church decided to buy a wheelchair for use by anyone who might have difficulty walking in church. I remember many of my patients had wheelchairs provided by Medicare that were just too big and heavy for their spouses to put into their car to bring their partner with a disability to Church or anywhere.Hopefully this will help with that problem, 

Talecommunications (Title1V) Telecommunications companies who offer telephone service to the general public must have telephoned relay service to individuals who use Telecommunications services for the  deaf or other similar devices that might be needed .

Miscellaneous (Title V) Includes a provision prohibiting either coercing ,threatening or retaliating against the disabled of those attempting to aid people with disabilities in asserting their rights under the ADA. For more detailed information check the ADA website    http://www.ada.gov/

So when some jerk like that radio talk show host Michael Savage spews his hate by ranting against Autistic children do protest, write, or use other ways to let people know your disgust.( For more information on this incident and reactions to it check out:     http://www.aapd.com    And for more information on Autism also check out:  http://www.autism-society.org/site/PageServer  )

But then you have to move on because remarks of people like that aren't worth spending your emotional energy on. I find  that it helps to remember the good changes that have occurred due to the passage of the ADA in 1990. There has been a gradual but steady increase in society's acceptance of the disabled now that people have the opportunity to get to know and understand them. I'll talk more on other legislation that has made a difference in the lives of people with disabilities in other blogs.

Enjoy the good days of summer,

Ellie

This is a question that I am I asking myself lately . We live on a tree lined street in Saratoga Springs . Most of the homes were built in the late eighteen hundreds to early nineteen hundreds. All of these homes have front porches .These big beautiful trees look great when you drive or bike down the street or walk down the sidewalks .They also provide cooling shade not only for us for porch sitters but for those bikers in the streets and walkers on the sidewalks. Having MS I need shade but I also need interaction with people . This is why maintaining shade on my front porch, the street and sidewalk is so  critical not just for the shade but also the interaction with the people going back and forth past my home.

When we moved here 30 plus years ago the trees were mostly older . Except the trees in front of our house.  We built full span window boxes on the railings of our wraparound porch. In them we were able to grow geraniums, petunias and Swedish ivy. And we also had sun loving plants in pots on the front and side porch steps .

Over the years the trees in front of our houses have grown up spreading their branches ving us more and more shade.This was fortunate for me having MS.  Unfortunately the older trees across the street were dying . Sadly one by one these big beautiful trees had to be cut down. It changed our view dramatically looking across the street while sitting on our front porch. But we were fortunate in that the house's across the street had big beautiful trees and shrubbery around them .   

I expected that when we lost those big beautiful maple trees we would also have lost shade on our front porch . But in fact the shade increased. We gradually had to replace our sun loving plants with shade plants.  And even though we have German Ivy and hanging begonias flourishing the plants in our window boxes were not. But my biggest concern in the front was a branch from one of the tree's that was hanging so low you almost had to duck to go by it.

So last week when I was awoken by the sound of trucks and chainsaws in front of the house I pulled myself up out of bed and threw on some clothes. I grabbed a container of coffee put it in my cup holder on my electric wheelchair and sped out to my front porch to check it out .The City was taking down a very big beautiful sugar maple tree two houses up. They had removed several dead branches but sadly the tree was past saving.  Before they left I asked one of the city workers if they could trim the branch that was so low at the side of our house.  As the big truck that had the equipment with the bucket to trim the tree had already left he said he'd try to get them to come back another day .

The next day I was out back on our deck when I heard a commotion of trucks out front . Looking around the side of the house I realized it was the city's trucks.  They had come back!   In my Electric wheelchair I sped down my back ramp and around the block to the front of my house. There was the city worker that I had spoken to. He said "I said I'd be back and here we are ". I was asked if I was sure I wanted the branch off as I would lose some shade. Knowing that I had a lot of shade at the other end where I sat and on the side  I had no hesitation and said yes!  But I watched them apprehensively cut higher then I thought they would and the branch come down! They then asked me if I would like them to continue trimming the tree and the other two trees in front of our houses as the branches were pressing on our porch roofs.  I said yes please and so he continued and then dropped two dead branches from the tree.  That really upset me and  I told them" I do not want to lose my trees." They reassured me that the trees were healthy!!

 
When they finished I thanked them and was very please with how they had done it .  That afternoon I went back back out to the porch .  And the area where they had trimmed the branch looked so barren.... I thought ,"oh what have I done ?"  The big tree they were taking down was already opening up the space at the side of our front porch door. My family and my next door neighbor reassured me that I did the right thing.  But it did remind me how much shady trees provide cooling.  And having MS heat is my enemy .  As everyone with MS knows.

There are all kinds of cooling devices like vests, hats, scarves,bracelets etc. Some are fancier but others are simple like gel crystals In the band of hats . I've used them and they work but they don't continue cooling for long.

That started me thinking about some of my old patients who had no trees around their house's. They hardly ever went outside in the summer. I talked to them about cooling devices and going out early in the day which I do but I never told them to plant a tree or a bush or vines. Of course some of my patients did not live in their own home but even so.

  I've always lived with shade tree's and bush's giving me shady areas. In fact right now out back things are really over grown. And I've started thinking about making changes. The biggest change  will be in the fall when we will have our large old butternut tree taken down .The tree is dying and has quite a few dead limbs on it. And there's a tree that we had cut down years ago that grew back in our neighbor's yard with large branches leaning on the fence shading our backyard.

To prepare for planning all this in the backyard  and where the shade will be I've been checking the internet. I found an interesting site.        http://www.epa.gov/hiri/strategies/vegetation.html     If you're planning ahead for shade down the road or need to reassess your outdoor activities and shade it's worth looking at  even though It's focus is on the environment and saving heating and cooling costs . Of course that's a good thing too!    

Meanwhile back to my front porch... my window boxes are doing better . And I put up a large sun loving petunia hanging basket on that barren side of the porch where the branch was cut off ...  It looks great!  Even though I have to water it and dead head it daily. That's my arm exercises of the day .  (Actually my family helps too) 

Any suggestions or experiences of your own to share please do !        

ellie         

When I woke up this morning I felt confused. Somehow there seemed to be something I should have remembered or known. I think I had a dream last night. But there was my husband wishing me Happy Birthday with boxes of goodies.

After a few sips of my coffee I started to open the packages. My presents were lovely and thoughtful. But, I was really down, tired and depressed like I was when I went to bed last night.

So after a few morning exercises I went into my bathroom to take my shower. As I was brushing my teeth I looked up to my shelves and there was my green glass fairy perched haughtily on the shelf. Suddenly the dream that I had last night came back to me.

I dreamt that I woke up and there was that fairy sitting on a box on my bed. She wished me a happy 73rd birthday. Stunned I asked her what was in the box? She smiled and said: “Guess.”

This must be a dream, I remembered thinking, so I might as well go for it! “A magic drug to cure me of MS?”

“And what would you be doing with this new body at 73?” She sarcastically replied.

“Oh, that’s easy I’d be playing tennis with my husband, biking, climbing mountains again, and going out visiting people and places everywhere every day.”

She smiled again and responded, “I’m afraid not because that would not be possible.”

“Then should I just guess again?” I replied.

“If you want you can or you can just open it.” she said.

I thought for a while then I responded, “Maybe it has a magic potion to take away my wrinkles, and pump up my lips a bit … actually a whole facial uplift. And while we’re at it how about a little trimming of my increased waistline and putting the extra fat on my bum!”

Again she replied, “I can’t do that either.”

Frustrated I said, “Then why are you bringing me this box?”

“Maybe it’s time to just open the box,” she said.

“Okay,” I replied with a big sigh.

Bringing the box closer to myself I lifted it and tried to shake it like I’ve always done with presents. It kept getting heavier and heavier and I had to drop it. Now, I really didn’t want to open the box! I wanted to wake up from this dream that was getting scary. But the fairy and the box were still there.

Then, very sweetly, the fairy said, “I know you’re frightened, so I’ll tell you what’s in the box. This is your box of sorrows.”

Puzzled I asked her, “Why are you bringing me a box of my sorrows?”

She replied, “Because I could feel your unhappiness with your body and all on your birthday. And you have been so good at filling this box. Sometimes it took time but you always did put your sorrows behind you into this box eventually. That has helped to make you strong.”

Now I wanted and needed to look into the box. And there were all the unhappy moments and disappointments in my life, including the deaths of my parents and two of my brothers and my sister. And I could remember the feelings I had at the time. So I looked up at the fairy quizzically and asked, “Why, why are you showing me this?”

“It’s to help you put things into perspective to help you move on.” Then I woke up.

I didn’t remember my dream until I saw my green fairy on the shelf in the bathroom. I guess I’ll always remember the message that she was trying to send to me. I just need to go into my bathroom and look up.  

                                                                                                                      ellie         

I am a person in a wheelchair because I can’t walk. However, I don’t think of myself as being a“disabled person”. I consider myself a person who happens to have disabilities due to the impairments from Multiple Sclerosis.

I feel that how a person is classified or labeled has a profound effect on both the person and on society’s image of that person. Just think about it!

When you hear that someone is disabled what is your image of that person? How is it different when you hear a person has some disabilities due to medical impairments? . I certainly think that the word disability has less of a negative connotation than “crippled”! When I graduated from physical therapy school in 1957 this term was still being used. And the word person was never attached to it.

To be fair I do think that society has tried to find less negative terms to categorize people who have impairments. And they still do use the word impairment as well as handicapped and special needs. But disabled has become the consistent and legal word to describe all person’s with impairments ( visual, hearing, mental, developmental, neurological ,emotional problems etc.). But in reality it just lumps everyone together, forgetting that they are many individual people who are unable to do a variety of things for a variety of medical reasons!

For example I know a young man who has minor neurological problems. He was diagnosed as a gifted learning disabled child. He always questioned why he had the term learning disabled as he had no disability in learning. His disability was in retrieving that knowledge quickly in speech, or writing. But with the use of the computer, a calculator and increased time when writing was required he did not feel he was disabled. As an adult now he’s not an athlete and he does still have slight residual speech impairment but he’s learned to cope and find ways to get around it.

I myself have MS. And over the years as my impairments from MS increased I went from a cane to a walker (with a seat) to a manual wheelchair and now to an electric wheelchair. And in my home adaptations were made to the doors, bathroom, ramps, lift in the van etc. When a new impairment reduced my functionality I tried to find a solution to maintain my independence. Not to let myself be disabled in that activity.

More and more I have felt strongly that society’s need to classify people as disabled stigmatizes them and puts them into a box. And this box limits their options for change and progress to independence.

So I was thrilled to see the U.N. this year establish the Convention on the Rights of Persons with Disabilities as they celebrated the sixtieth anniversary of the United Nations Declaration of Human Rights.

This Convention has been in the making since the year 2000. It came about because people around the world recognized that the rights of people with disabilities were not being protected under the Existing Seven for Human Rights. They found that persons with disabilities faced discrimination in all aspects of society in the workplace in education in government and in social programs. So this convention was not created to create new rights for the disabled but only to assure that they had the same rights as everyone else.

What is most exciting to me about this is that there is an apparent shift in the thinking about disability! The shift from considering persons with a disability to be a social welfare concern to a human rights issue. This shift acknowledges that societal barriers and prejudices are in themselves disabling. As the bylaws state: “The recognition that disability is an evolving concept and disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others.” (The full bylaws are in this PDF)

There was a special ceremony on May 12 in New York City to give the estimated 650 million persons with disabilities worldwide dignity and justice with this Convention.

My thankful gratitude goes to all those people from all over the world who have fought for this convention. And also to the 128 countries that have signed this convention since March 3, 2007 and those seven countries that have already ratified the convention.

True equal rights can now become a little closer to reality for all the persons with disabilities ( the children and adults who have impairments) and hopefully relief to their families. Now if this can just get down to the grassroots and people and societies start to think differently too!

For more information on the Convention, here's their website

Ellie

What’s a day! And how great it is to get outside under my own power in my electric wheelchair. Having been inside for so much of the winter, breathing fresh air feels so amazing. It is especially so this Spring, as I was recently forced to use my manual wheelchair for almost a week. Though it felt like a month!

You see, the controller on my electric wheelchair stopped working. And of course, it was past the measly one year warranty. I was shocked with what I heard. If it was broken, the only solution was to replace it, not repair it. And the cost was $1,000.00! After my oldest son Sean made many phone calls and a visit to local vendor, we did find a source that was a bit lower. What a pain, though.

My electric wheelchair has been a godsend. I am not as tired since I started using it both inside as well as outside. And I’m capable of doing so much more. I feel like I am part of the family now. However, as we did buy this wheelchair ourselves, we also buy the replacement parts ourselves! And the replacement parts are very expensive. If I had bought it through Medicare they would have paid the thousand dollars without a without a problem.

So why didn’t I go through Medicare, or even try to go through Medicare? Because I knew they would deny me. You see, I can still push myself in my house with my manual wheelchair over my hardwood floors. That is Medicare’s “in home only” policy for equipment. They will help you get to your bathroom, bedroom, and kitchen. They consider those areas the necessities of life. And that is the only thing they are required to cover.

The greatest necessity in my life, is being a part of the community. That is the end goal of all rehabilitation. You can’t do that if you can’t get outside into the community. But, Medicare doesn’t cover that. That’s not their criteria.
They don’t give power wheelchairs if pushing your manual wheelchair any distance outside your house is not possible.

Here are some links concerning this policy.

http://www.unitedspinal.org/advocacy/rightwheelchair/

http://msactivist.blogspot.com/search?q=

I wasn’t about to wait till I could not push myself with my manual wheelchair to my bedroom my kitchen or my bathroom. For me that would be too late, and what a waste of my life here and now. I wanted to get out in my community while I still can. MS is a progressive disease, so my time is now. Carpe Diem!
So, hear I am back on track! Out and about. Nothing better than being out as Spring arrives! But once out, one notices those poor curb cuts again. I think I’m going to try to do something. I’ve talked to city hall before, and the results were less than stellar. It’s a big project for them, amidst many other projects, but staying on top will keep it to the top of the pile. Hopefully. My next post will be about Project Curb Cut!