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Archive for the ‘ALS’ Category

I Want a 10-Day Paralympics Extravaganza On NBC in 2016 With a Five-Hour Opening Ceremony!

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by Treadmarkz

Now that I have stated my demand, clearly and concisely, I’d like to note that once again in 2012 the Paralympics follows close on the heels of the Olympics. Once again it has been relegated to a Youtube channel, various other online live feeds, etc, while the Olympics (the Walkie version) is again a world-wide network TV 24-hour a day, weeks-long extravaganza. It’s probably on TV right now. Let me go check………….Yup. It is. Water polo.

Eighteen percent of the U.S. population has some form of disability. That statistic throughout the world is comparable. Everybody knows someone who has some kind of disability that would be represented by athletes in the Paralympic Games. Why is this not on NBC? Do we need a specific TV network just for disability-oriented programming much like African-Americans did with the BET network?
Come on, NBC, it’s 18% of the population! Think of the ratings! Even if just out of curiosity, huge numbers of people would be tuning in to see this. Think of the new ad revenue you would generate from a wide variety of sponsors.
And lastly, you would be providing a service. Network exposure for Paralympic athletes would show the world at large a new side to disability. For one thing, it would demonstrate how many disabilities are not visible, yet very real for the person living with that disability. And it would help able-bodied people become more knowledgeable about a wide array of different types of disabilities. This can only be a win-win situation. The Olympics this year got Paul McCartney to play the opening ceremony. I say we get John Mellencamp to play the 2016 Paralympics on NBC. He’s got spina bifida. See, a disability that is not visible. You’re learning something already.

If you agree, please pass this on.

Ability Lifting Solutions Committed To Improving Quality of Life and Freedom for the Disabled

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by Treadmarkz

Living in the material world, businesses often will not make the necessary changes to make their establishment wheelchair-friendly unless it becomes obvious to the owner that not doing so would mean loss of revenue. Often times it seems that up-front cost of renovations are the foremost concern. Often the prospects of a burgeoning clientele base – namely the disabled community – is not taken into consideration.

But this is not just an American problem. In Britain, the Equality Act 2010 appears to cover the same ground, roughly, as the Americans with Disabilities Act. London, dwelling place of 1.4 million disabled people and destination to large numbers of tourists every year, does not appear to be exempt from the problem of accessibility. British people with disabilities encounter the same every-day aggravations that I do; stores, restaurants and other public areas are not always accessible. I can’t say I am surprised.

I discovered this while discussing the issue with a representative of a British company that designs, builds and installs elevators (platform lifts) for domestic and commercial (even portable!) settings. They have numerous template designs but also specialize in “bespoke” designs, meaning “to the customer’s specifications.

The company, I feel, recognizes that many disabled people’s quality of life could be greatly improved. Inactivity comes from feeling disconnected from the outside world, feeling confined to one’s home. Ability Lifting Solutions is devoted to providing its clientele with a much more flexible quality of life, more options, more freedom. And in the end, that really is the answer, isn’t it?

They work with the customer to “suit your needs and budget” even if all you need is a lift to get you up one step. The work is all very modern, sleep and aesthetically pleasing. Domestic accessibility has come a long way since I was growing up and at my parents’ house we had a mechanical device in a closet renovated into an elevator shaft.

Ability Lifting Solutions’ Web site does not discuss pricing outright, but it does have a “Get a Quote” link. Surely with this company around there is a convenient, affordable way for companies to do as the Equality Act 2010 says. Surely it is worth a look if you are a business owner or a disabled resident in the U.K. or mainland Europe. Even if you are not, it is still worth a look to see how their product stacks up against what is available where you live.

Requiring Voters To Have Photo ID Would Exclude Disabled?

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by Treadmarkz

In my local paper today, I read an editorial on the debate over requiring voters to have a photo ID. It claims that 10% of eligible voters with disabilities, (27,000 people in Minnesota where I live) would not have photo ID and would therefore be excluded from the electoral process.
Okay, my first questions is why is this? Though I do not myself have a driver’s license so I have no right to question this, I do know that it is not too expensive to get a photo ID which can be used for every occasion except for operating a motor vehicle. I understand the economic problems disabled people face in the competitive work force, but if 10% of disabled adults in this state cannot afford to get this ID card, a one-time expense, then this state, this country really, has more problems than I thought.
If this is the case, then let me propose a solution, and then we can debate why it is not plausible so we can make sure nothing ever gets done about it. My solution is we reissue Social Security cards to all adults, but make it a photo ID rather than the flimsy proto-cardboard they’ve been using since the time of Plymouth Rock! Every legal citizen has one. In switching over from the old to the new version, we might just be able to weed out some of the illegally held Social Security numbers in the U.S. as well.
Tell me where I’m wrong.

HBO Film To Shed Light On the Needs of Developmentally Handicapped Adults

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by Treadmarkz

It has come to my attention that on February 22, HBO will run a film called “Raising Renee”.

The documentary is an account of a woman who elects to care for her developmentally handicapped adult sister. My wife is a care giver for seniors. She can’t tell me everything she does during her day due to confidentiality promised to clients. And though this is not the same thing as caring for an adult with a developmental handicap of course, I do have an idea of how hard this job is.

I will be watching on February 22 and my hope is that it opens up a lot of eyes as to the task we face as a nation in getting some of our most overlooked citizens the care they need. I will try to provide a film review after the program airs.

It’s Not What You Got, It’s How You Use It.

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By Treadmarkz

For those of us with disabilities, it is easy to get down on ourselves for what we don’t have. Abilities, skills, functions. Whatever. If you have recently experienced this feeling of dejection, this observation recently made by my wife is for you.

We were thumbing through a book of “useless facts” when we stumbled upon something that turned out to be quite useful. “Leaches have 32 brains,” it read.

To which my wife blithely replied:

“How come they haven’t taken over the world yet?”

and

“It just goes to show its not the brains you have, its how you use them.”

and finally

“I mean they’ve got thirty two brains and all they’ve figured out how to do is suck.”

All this before I had mustered up the wit for a single observation of my own.

One Disability That is Almost Wiped Off The Planet!

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Below I will leave a link to a story about a great effort of the Rotary International and the Gates Foundation to finally make polio a thing of the past. Yes polio has been, for the most part, a non-issue in U.S. for decades, but there are still people here living with its disabling after-effects, and there are still just four countries where it is still newly afflicting people, thankfully now in minimal numbers.

Before you write this off as another lost cause, Here is a chance to read a story with stats on specifically how much progress is being made. This is impressive when you compare it to, for example, the standstill we seem to be at with AIDS in Africa.

If the link expires, please contact a nearby Rotary or the (Bill) Gates Foundation for further information.

If you are like me and you have a disability, you likely feel empathetic toward anyone who has a disability which is more difficult to bear than your own. Whether you have a disability, know someone who does, or are just randomly coming across this story, I urge you to read the story and pitch in to the effort and tell a friend.

The only way we can get rid of terrible things like polio is by showing love, and choosing to help those who are afflicted, whom we don’t know, have never met, and probably never will.

Overcoming the Human Body’s Inherant Limitations

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by Treadmarkz

I received this video by email the other day (Thanks Mom) and it is a perfect example of why the spirit is much more important than the body that we are born into.

The video is of a man born with no arms or legs but a good reminder to anyone who’s ever said “I can’t” before. He is also an example to the world on how to be untouchable in your determination to persevere.

Give it a look HERE

How To Adapt Your Home/Mind To Your Disability

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by Treadmarkz

A couple of nights ago one of my employees pulled me aside because she said she had to talk to me about something, “un-work-related.” Employees often come to me and my fellow supervisors with personal problems especially if they relate to that person’s inability to make their scheduled shifts for the week, so I didn’t think anything of it. When we went into my office she asked me if I could make any recommendations on adapting a house for a friend who was recently paralyzed in a car accident.

Should be easy, right? I’ve got spina bifida AND my father is a carpenter. I deal with finding different ways to do things all the time that other people take for granted right? Well, as it turns out, I am the one that takes everything for granted because I have apparently become so complacent in the way I live my life that I could come up with no advice other than to make sure the sinks have room for a wheelchair to pull under. Because I was searching my own memory bank for adaptations in the usual household setup that I have personally found useful, I found myself buying some time by pontificating on the importance of making the guy feel like nothing has changed, like you still have the same relationship as you did before. I felt shallow for only being able to think of that, and I promised the girl I would look into it myself and see what I could come up with.

I have just gotten so used to finding ways to do things or just dealing with the fact of life that things are not always going to be made easy for me. Aside from the obvious, that is – access to the house itself, doorways wide enough to get through, making sure things can be reached from a wheelchair. I mean, life should not be a constant struggle, of course.

My wife often asks me why I don’t make calls to see if I can’t get certain things changed or adjusted so it is easier for me to use, or why I don’t invent things to make life easier for myself and people like me. The reason, I think is because I’d rather continue to live my life like I have been (as similarly as possible to the way everyone around me is living theirs) than try to change it. Even if certain aspects of it suck a little bit from time to time.

The truth is that I don’t see a lot of websites that are specific to this problem. Not that you can easily find by Googling the expected phrases like “adapting your home for a disabled person”. Should be a large market for this developing as we are in war time and we have thousands of injured veterans coming home, and back to their family life. People around me will probably say “Well now that you’ve seen the need for one, why don’t you start a website that has that type of information in it?”

I wanted to try to find the information my co-worker asked about because I do have great sympathy for anyone who loses their physical abilities mid-life. Especially in the case of the person my co-worker was talking about, who, by no fault of his own, was paralyzed probably for life.

I have thought about it though, and I have come to the conclusion that my advice was the best I could give. I have lived with many roommates and now with my wife, and based on the good experiences I have had with all of the people I have lived with, I can honestly say that I would rather live in a place that was not extremely accessible with people who treated me like I was able to do anything they were, than live in a Paraplegic’s Paradise with every accommodation made, with people who in one way or another made you feel like a less able person. As a disabled adult, I can attest that the people around you have a huge psychological impact on how you conduct yourself.

A Cure For Pity

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by Treadmarkz

I love this ad that Gillette Children’s Specialty Healthcare is running. The theme is “Pity. It’s 100% Curable.” I think the ad hits the subject from the right angle.

I love it because I went to Gillette myself as a very young child with spina bifida and it was at that stage in my life when it was most crucial that I found out for myself that yes I had a disability and no there was no changing it, and that the only thing that needed adjusting was the way I saw myself and the way I worked with what I had. Of course I did not think of it in those words exactly, when I was five. But you get the idea.

And this ad works on more than one level really. It addresses the pity that the disabled child might feel for himself, and it also speaks to the fact that once that child cures his self-pity, he can start showing the world around him that there is absolutely no reason to pity him, nor is there, in fact, any room or time for pity. He’s got a life to start living.

The Next Big Questions for the United States of America

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Treadmarkz

One of the biggest, most deeply debated questions in the U.S. has been answered. Will we ever have a Black President? Well, Obama is half Black and half White. So I guess technically “Will we ever have a Black president?” is still the big question. But Obama’s election is considered to be a huge step in the right direction by millions of Americans as well as many millions of well wishers around the world. In many ways this has nothing to do with Obama’s race. The goodwill he is receiving certainly owes much to Obama’s ideas; his policies and his outlook for the future of this country and how it relates to the rest of the world.

But we also must keep in mind that his election has shown the world that the U.S., supposedly so far ahead of the rest of the world, has finally made a concrete statement to the rest of the world about its “open-mindedness.” After all there have been female heads of state all over the world, including many places in the supposedly-backward Middle East, for a long time. Not in the States, though.

In 2012 – or 2016 when Obama is no longer eligible for the Presidency – will it be considered a step backward if a White male is once again elected president? Certainly it will not be a step backward if Obama makes good on his ideas and becomes a well-respected president, and the next president continues where Obama left off.

Is this the crossroads of history when we can start asking not if, but when will there be an Asian U.S. President? When will there be a Hispanic, “Native American” or Middle Eastern, or Jewish or Muslim or Atheist U.S. President, or a president who is a “little person”?

When will we have an openly homosexual President? (see James Buchanan). Certainly the debate over “gay” marriage in the U.S. right now makes this an unlikely atmosphere. But the Civil Rights movement came to a crescendo 40 years ago, and Barack Obama has been elected. Will we see a gay president in 2048?

When will we have an openly disabled U.S. President? (see Franklin D. Roosevelt). The Americans with Disabilities Act empowered millions in 1990. Will we see a president who is blind, or a president who will without reservations appear on television in his wheelchair, or, let’s say, without his prosthetic in the year 2032? John McCain has a minor disability due to a war wound which he spoke openly about when the issue came up about him not using the Internet. And he came close to the White House.

These are just some of the possibilities that the election of Barack Obama has brought closer to being a reality. Now all we have to do is watch how history plays out.