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Chameleon

Member
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Aug 9, 2010
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14
Reason
PALS
Diagnosis
04/2010
Country
CA
State
BC
City
Campbell River
Quality of Life
Who’s the Judge?

By Sam Filer

(The National Access Awareness Week (NAAW) Kick-Off on May 29 saw the Metro Toronto Convention Centre teeming with activity. One of the most memorable events that day was a speech given by Justice Sam Filer, presented with the assistance of his wife, Toni Silberman, to guests over luncheon. Justice Filer shared with delegates his humour, intelligence and deep understanding of the quality of life.)

Honoured guests, ladies and gentlemen:

We thank you for your kind introduction, and for the special privilege accorded us by National Access Awareness Week to address you at this significant event. We commend the pioneers of National Access Awareness Week and its subsequent organizers for their masterful success in raising public awareness of not only the barriers facing people with disabilities, but their myriad achievements as well.

Before beginning, I would like to forestall any confusion which might arise. This speech, being primarily Sam’s, will be read in the first-person "I," referring to Sam. Sam will therefore, in turn, refer to me as Toni or "my wife." Unless, of course, it’s an anecdote, in which case the "I" will refer to me, and Sam will be referred to as Sam or "my husband." The word "we" will refer to Sam and me, or to the collective "us," or to the generic "one," depending on context... Is that clear? Then let’s begin Sam’s remarks!

In determining an appropriate title for these remarks, I suggested: "If you want good strawberries, you also need lots of manure." The sunshine, which is a given, represents the light that comes with knowledge and understanding, and the challenge of achieving a rich and satisfying life. The manure is, of course, the price you pay in physical, emotional and financial terms for getting there.

Toni, on the other hand, suggested the title, "A funny thing happened on the way to Sam’s eulogy," indicating that despite all prognoses to the contrary, life holds unexpected and enjoyable pleasures, chief among which is the fact that I am now eight years beyond my death due-date, and continue figuratively to thumb my nose at the moribund statistics surrounding Lou Gehrig’s disease.

After much discussion, we compromised with the title you have before you.

Before developing amyotrophic lateral sclerosis (ALS), I, like many, if not most, Canadians, thought that "access" referred to wheelchair users having unimpeded access to government buildings and who should, at minimum, be able to get on and off a sidewalk without taking a tumble, causing further disability.

As it is said, "I’ve come a long way, baby."

Barrier-free learning, in any arena, is a reciprocal process, which requires knowledge of both rights and responsibilities: the right of persons with disabilities to access learning in the most appropriate format, in the most appropriate venue; and the responsibility to ensure that service providers, educators and employers are aware of what accommodation is necessary to make that learning possible. The point, of course, being to "en"-able, rather than "dis"-able -- to facilitate the educational, vocational and social integration of the person with special needs.

Throughout my nine-year visitation with ALS, I have learned that it is possible to continue to live a life of quality, and to share that quality with and from our devoted family and friends, whose love is a constant source of joy and strength for us.

I have learned that I have, for the most part, access to a wide range of recreational and vocational options. The ease with which I can access them on the other hand, is still a matter for debate.

There is no special target group for whom access is a sole prerogative. I consider access an inalienable right for all people -- with disabilities and temporarily without -- and the means by which we are enfranchised, to use the vernacular, by full and equal recognition and exercise of human rights or freedoms.

Those rights are founded upon the simple but eloquent concept of human dignity. That refers to the quality or state of being worthy and esteemed -- without qualification. It is now an idea of uncontested permanence; its application is universal, that is, to all human beings.

The extent and the sweep of human rights encompass the full range of ordinary, everyday activities in the lives of ordinary, everyday human beings. This is its majesty -- it is the just means by which justice in our society, namely equal opportunity, must and will be achieved.

Over the past decade, and into the next, issues of human rights and, particularly, the rights of people with disabilities, will surge forward. The debate over these rights is an emotional one involving morality and politics, fuelled by different visions of what is right and what is feasible. It is a debate about government responsibility and family obligations; the roles of, and competing interests among, the public, private and community sectors; and whether people with disabilities have as strong a claim on resources and opportunities as other groups.

Such a debate implies a hierarchy of value upon the lives of human beings. It divides rather than conquers. It destroys communities rather than builds them.

People with disabilities do not seek handouts, nor do they consciously search out charity. They, we, I, earned my right to continue sitting as a Judge, despite my disability -- to continue to utilize fully the one major faculty remaining to me: my mind. I am unquestionably restricted in the physical manifestations of my daily life, but I would consider it an insult to my dignity to have my intellectual abilities challenged by judging me on the basis of my physical limitations. I do not construe the decision to allow me to carry out my judicial duties as a gesture of charity, but as an act of courage on the part of my colleagues, as an acceptance of the fact that a person is a process, not a product, and as a recognition that under the guiding principle of equality, to treat someone equally does not mean to apply the rigorous and immutable standards of sameness. I am different. I have a physical disability.

We must all -- people with disabilities in particular -- be allowed the opportunity we all have and need to prove ourselves, to contribute to our chosen field and to our quality of life. Any finding to the contrary sends the message that we no longer have any contribution to make, that -- for example in my case -- unless I am physically capable of transporting myself to the seat of justice, I am incapable of rendering it.

The right to be able to access transportation, housing, education, recreation, employment and communications is now entrenched in the laws of our land, and must be accommodated. The duty to accommodate is a fundamental aspect of our rights as human beings, and an integral part of the right to equality.

I am convinced that the rights of people with disabilities, rather than concern for the economic repercussions of tolerance and accommodation, should be the guiding principle. The tendency to restrict allocation of funds for basic human rights and dignity during difficult economic times must be resisted.

Admittedly, in more recent times, access to improved technology, transportation and training, changing public attitudes and support services have tended to reduce the severity of the effects of disability, thereby rendering "equal treatment," and equal rights as citizens, a less remote possibility.

Some 2,500 years ago, give or take a year, the Rabbis of old stated, "Don’t isolate yourself from the community." We are social beings; we need the touch of another hand on our own. The smile and laughter of friends. We need to be reminded that we are not alone. The streets, malls, parks, schools, offices, are as much ours to enjoy as anyone else’s. This has been greatly facilitated since WheelTrans no longer requires a spontaneity factor of four days!

Access to communication is an important component of the NAAW logo. Despite having lived most of my life as a communicator, one element I didn’t give significant thought to was how I was going to communicate with others as my condition progressed. Many people are quite able to talk after a tracheostomy. Whether through laziness or lack of physiological equipment, I was not one of them. Fortunately, there are talking computers with sophisticated switches which, in turn, are activated by a variety of devices requiring gross to minimal muscle movement, giving literal meaning to the expression, "in the blink of an eye."

One of my greatest difficulties has been to develop the necessary degree of patience, and increase my frustration threshold with respect to communication. I found someone who developed a myoelectric switch which I have been using to this day. I communicate adequately now, and am working on a new communication system to increase my speed and facility with the computer.

But what I miss most is not being able to speak naturally to our seven-year-old daughter, Jaime. Those who "knew me when" know what my voice sounded like. Now I use a computerized voice synthesizer. That’s all Jaime knows. It’s better than nothing, but I wish it were otherwise. My greatest source of pain was wondering how I was going to convince a very young child that a man who cannot talk to her, nor kiss her, nor hug her, really loves her.

I obviously underestimated her.

Our daughter has taken it upon herself to educate her school about ALS, and initiated a fundraiser for the ALS Society of Toronto. Through her actions, she not only shows her love for, and acute awareness of, Sam and his condition, but she has succeeded in demystifying what could be an intimidating and frightening experience for her classmates.

Is there a limit to one’s work or creativity when that person has the communications limitations posed by a disability? When considering people like Professor Stephen Hawking of Cambridge University, England, the answer has to be a resounding "no." Professor Hawking, who has lived with this so-called terminal condition for over 30 years, is best known as the most brilliant scientist of our time and many rank him on a par with Albert Einstein. He still conducts seminars in physics using a computer-operated voice synthesizer, and has written in excess of 200 articles and several books, two of which became best sellers, and one of which became a movie. As well, he frequently crosses the Atlantic to deliver lectures and conduct seminars. What a loss it would have been if he did not have access to the technology that allowed him to communicate his theories.

The same technology is available to us lesser lights to pursue our own interests, as well as try to satisfy our needs.

But communication refers to far more than conversation. It refers to the transmission and receipt of information. The ideal goal is that access to information should not only be available to all, but known to all.

I believe very strongly in the principle of self-determination, which is the normal respect to which an individual is entitled. It involves asserting one’s self in regard to choices, wishes, desires and aspirations, and participating in decisions involving one’s own interest. These decisions can only be made on the basis of information gleaned.

Too often I, and people who have disabilities, have experienced overprotection or paternalism in relation to those who wish to protect us from harm. The concept of dignity of risk bears with it the issue of informed decision-making, to allow for greater freedom, for the development of the ability to handle rights and responsibilities effectively and appropriately, and for equal opportunity with other individuals to make for ourselves the life that we are able and wish to have.

When it comes to determining quality of life, the criteria are so subjective that it’s easier to agree on what it’s not.

In my case, it’s likely that my condition and the limitations it imposes on me would be found on most lists of 10 top things that make for a life lacking in quality. Let me assure you: I am not confined to a wheelchair, I am mobilized by one. I am not ventilator-dependent, I am a happy consumer of a lung-expanding, breath-giving device which allows me to continue doing the things I love. It has given me, and us, a degree of independence and a second chance at life, that we would otherwise not have had.

The doctors told me that ALS is a virtual death sentence. But I am not "dying from" a life-threatening disease -- I am "living with" a life-enhancing condition.

Far from rendering me "disabled," the ventilator, the wheelchair, the computer, have empowered me, to a level of ability not previously considered, given the constraints imposed by ALS. They allow me to maximize my abilities, rather than focus on my disabilities.

Quantitatively and objectively, to come full circle, the manure of my projected title appears to outweigh the sunshine. But when you evaluate our lives qualitatively, there is no contest. To quote a very dear friend of ours, my life continues to be supported in ways less tangible but far more powerful than the pumping of a machine.

Access, which leads to equality of opportunity, represents a minimum standard below which conduct should not be tolerated. No civilized society worthy of the description can afford not to struggle for its full achievement. It is a signal of a community expectation. And National Access Awareness Week has many expectations -- valid expectations that deserve to, and must, be heard. I trust we will indeed be hearing them more resoundingly in the future.

In closing, I leave you with a thought that has become my personal credo: "There are those who would sit and curse the darkness rather than light a candle." I thank all those who helped me light the candle and keep it lit. By your mere presence here today, by your involvement in such a crucial and worthwhile enterprise, and by your willingness to learn, you are evidencing your own commitment to lighting the candle for yourselves, and on behalf of so many others.

Thank you for listening.

(Justice Sam Filer and his family live in Toronto, ON.)
 
Amazing..thanks for sharing. THis gave me the chills!
 
He has passed away? Great man!
 
wow. Brilliant man.
 
Well, I guess I have to throw out any excuses I may have about not being able to do anything in the future, or live my life to the fullest! Sam has proved there are no limitations to the human spirit! Thanks for sharing this!
 
hello this was perfect timing for me i was lying here being a cry-baby . i was worried what would my do with out me and that i was going to die. i had fill out dnr papers a few weeks ago ,but now i am getting rid of them. i can live and just have als. i had not even tought about how i could be useful,how selfish is that. but thanks to your letter and God prefect timing you have made me feel hopeful. i have decided i have never been a quitter why start now. thank-you again
 
Right on, flower....

I figure, as you do, that quitting is not an option and that as long as I can give something - appreciation, ideas, my love - to anyone, I am useful. Thanks to each of you who read Sam's speech and for allowing it to inspire you. It was sent to me by my friend, Brent, who had a stroke some years ago and manages his life from a wheelchair with the use of one arm and a caregiver. In this state, he founded a not-for-profit company in Ontario called Help For Headaches. He has written a book and helps people from all over the world to find doctors who can help them with persistent headache issues that he has battled with for many years. I met Brent on the phone when he called for assistance with some graphics, and before long, my company had readied his book for publication, developed promotional materials and rebuilt his website. I found myself in awe of Brent's tenacity and willingness to go to the wall for his cause, and helped him in every way I could.

Then I was diagnosed with ALS. Brent continues to inspire me. We've talked about getting together to have wheelchair races in a couple of years if I can't beat this thing. We'll see how it goes, but in the meantime, it's good to have someone to inspire you - to help you remember who you are and what you are capable of. With a disease like this, it's so easy to get bogged down by what hampers your body, and just as easy to forget what you can give that has nothing to do with your physical being. And one day, if I can't change the course of this situation, and I can't move or speak, I hope that simply being alive and giving others the opportunity to care for me, gives them something that makes a difference in their lives.
 
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