Six Degrees of Dignity: Disability in an Age of Freedom

DAVE SHANNON SPEECH: Legal Ethics and Consensus Building in Regards to People with Disabilities

Ladies and gentlemen, it is truly my honour to speak to you today on a topic that is both crucial to our society and one that fills our professional lives with challenges that are great in scope yet often as fine as the point of a laser. I wish to discuss with you the subject of medical and legal ethics regarding the rights of people with disabilities.

This discussion will travel a necessarily broad and winding path. For legal ethics are not confined to the court or judge’s chambers any more than the desire for a healthier body is confined to a research hospital or an operating theatre. Both law and medicine flow from the desires and opinions of the practitioners THE SYSTEMS WITHIN WHICH WE WORK, and the greater public.

Therefore, I will not be burying you in arcane statutes or the judgements of renowned jurists except where absolutely necessary. Rather, let’s talk about people: men, women - young, old - from all across this COUNTRY.

I’m going to discuss why perceived barriers within a society exist - identify those barriers - and propose a model for change. This model will create a welcoming community for all people with a spinal cord injury based on the principle of dignity.

Dignity ...

First, I believe it is always important for an audience to understand something of the philosophical background of the speaker. If that sounds terribly pretentious - as I fear it does - let me phrase it this way: I want you to know where I’m coming from.

many WOULD AGREE THAT Prime Minister Pierre Trudeau SHOWED AN absolute commitment to equality. He felt that the worth of a nation was measured by how it treated its minorities. In 1982, he wrote:

"We know that justice and generosity can flourish only in an atmosphere of trust. For if individuals and minorities do not feel protected against the possibility of the tyranny of the majority ... it is useless to ask them to open their hearts and minds to their fellow Canadians."

TRUDEAU KNEW THAT THE INTERCONNECTEDNESS OF US ALL WAS AT THE CORE OF OUR MUTUAL EQUALITY AND TRUST WOULD FLOURISH WHEN WE SAW THAT VALUE OF SUPPORTING ALL GROUPS. That said, Trudeau was not a believer in a maze-like system of special rights or reserved privileges for this group or that segment of society. He openly sneered at the idea, once saying in a television interview, "I don’t need politicians with special powers to protect me, because I’m no weaker than you are and I don’t need them to protect me." He was a man of peace and yet as you can see he had the heart and passion of a warrior.

In my ideal world, we would not be discussing the legal ethics or the legal rights of People with disabilities, People with special needs or People with spinal cord injuries. Rather, the exchange of ideas should centre purely on the rights of people. Period. No ad… But, as you know from your own experience and your desire for me to deliver this speech, that ideal world is not yet the definition of the age in which we live. Therefore, we ask today, how do we make that world live? How do we accomplish the dreams of the late Senator Robert F. Kennedy who called us to duty more than forty years ago, saying:

"Laws can embody standards; governments can enforce laws — but the final task is not a task for government. It is a task for each and every one of us. Every time we turn our heads the other way when we see the law flouted — when we tolerate what we know to be wrong — when we close our eyes and ears to the corrupt because we are too busy, or too frightened — when we fail to speak up and speak out — we strike a blow against freedom and decency and justice."

And so, let us look at the world today not as objective examiners and critics, but rather as professionals who have the power to commit to freedom and decency and justice.

So what is the situation today? What if I said to you that in Canada that of the approximately 33 million people over the age of 5, a full 3 percent of them live with a physical disability? I suggest that it might well surprise you. You might reflect that the number seems high, that you don’t see that many people out there on the streets or in the shops who appear to have a disability. You might even think that this explains all those reserved parking spots outside the Wal-Mart. Just three percent would make you think those thoughts.

Imagine if they awoke one morning and discovered that in CANADA, almost All the citizens of Greater TORONTO or almost the combined total of ottawa, lower mainland vancouver and MONTREAL had suddenly become disabled.

The goal would be clear: to return theSE great citIES and their 4.4 MILLION suddenly disabled people back to productivity. The task would be immense, but the will to do it would be positively Churchillian. As Winston Churchill said to the U.S. Congress in 1941: ‘We shall not fail or falter; we shall not weaken or tire... Neither the sudden shock of battle nor the long-drawn trials of vigilance and exertion will wear us down. Give us the tools and we will finish the job.’ Give us the tools to break down barriers. Give us the tools to build productive lives. Give us the tools to create a welcoming community. We will finish the job.

That I believe in a nutshell is the message that People With Disabilities would want conveyed to all who have the power to make a difference: Give us the tools and we will finish the job.

But what are those tools and how are they delivered? The disabled are not confined to A few of canada#s largest cities. In some ways, that would be an easier problem to deal with. But the disabled do not live together in large communities. Instead, all too often they live alone, scattered, isolated from the mainstream of human events and leave the road of human opportunity untraveled.

4.4 million Canadians has a disability . For Canada’s Aboriginal population, the rate of disability is more than one and a half times the rate for the non-Aboriginal population. Women are more likely than men to have a disability, regardless of age.

PWDs in Canada and throughout the world experience persistent and unacceptable socio-economic disadvantage. Statistics do not reveal the emotional and financial effect that barriers facing persons with a disability has on this community, and their family members, loved ones, neighbours and co-workers. Among the daily obstructions experienced by PWDs are:

• Manageable transportation
• Available housing
• Accessible educational opportunities
• Attention to personal needs
• Admission to leisure and entertainment facilities
• An unemployment rate greater than 55%

Canada was considered an international leader in the promotion of rights and opportunities for the disabled. More recently, this position has slipped as disability advocacy groups have been forced to jockey against each other for government funding and support.

Of greater concern for persons with a disability are the condescending attitudes of `pity’ and ‘sympathy’ and the belief that the disabled must be ‘looked after for their own good’. This not only engenders forms of marginalization for the disabled but, moreover, in a cruel reversal, serves to internalize the message of exclusion to the disabled themselves. By minimizing their own expectations for equality and dignity, contemporary society effectively underlines the inequity and discrimination people with disabilities are trying to overcome

Ironically, Within Canada the potential market of persons with a disability is valued at over 25 billion dollars. Aha! You might think! The Internet then is a great idea! More people can work from home. A recent article in the New York Times confirms that call centers in particular are hiring the disabled as home-based agents. In 2006, the Internal revenue Agency hired 350 home based agents among the disabled community to take in-bound calls.

So there are opportunities there, but call centers are just one opportunity and with the development of Do-Not-Call lists and outsourcing to foreign nations, that opportunity is not a cure-all. Besides which, not everyone either wants to work for a call center nor necessarily want to work from home. These should be options, not sentences.

We like to think that the Internet is the panacea to all problems. ‘Why,’ we think, ‘the virtual community is the answer to the lack of a physical community!’ I’m sorry, but that simply does not work. the argument falls apart on even practical terms. According to census data from 2000, while 51.7% of American homes had a computer, only 23.9% of disabled people’s homes had one. In 2000, 38.1% of all Americans used the Internet, while 9.9% of the disabled were worldwide web users. Certainly the numbers will have risen since then, but the lag will still remain.

Furthermore, even if the Internet became suddenly available to all people with disabilities, that would not necessarily pave the way to full integration into the community AND CHANGE SYSTEMIC BARRIERS. I spoke earlier of the goal of productivity.

I believe I have laid out the problems for you, but a problem presented without a solution attached to it is just an eloquent means of passing the buck. That is not what you invited me to come here to do.

Let me speak briefly about my personal story. I suspect that the question probably has crossed your minds anyway. How did I get to where I am today?

In 1981 when I was 18, I was a University freshman at University AND THOUGHT TO TRY OUT FOR THE RUGBY TEAM. Rugby, in case you don’t know, is kind of like football, but without all those wimpy pads and things.

Anyway, in order to meet some new friends and get fully immersed in University life, I joined Waterloo’s varsity rugby team. On September 23 of 1981 I was at practice. There was a scrum - sort of like the clash of offensive and defensive lines. Everybody got up but me. My neck had been broken at the cervical 4-5 level and there was no chance of ever walking again. I thought, ‘Oh yeah, I’ll just pick up and go on.’ I was completely in denial. As I think back on it now, perhaps that denial was not such a bad thing. In denial there is the seed of hope. It was also a seed carefully gardened by friends and family who told me I was still the same person that I had been before the scrum. The determination to travel the perilous journey of advocacy had begun.

My friends - I think we’ve gotten to know each well enough by now that I can call you my friends - we all have changes in our lives. Some are major like a spinal cord injury or on the brighter side a marriage, a birth, a change in career. Some changes slowly creep up on us, like a waistline or a bald spot.

But our lives are a stream that never rests and the water there is at the stream’s source is inseparable and connected to the drops at its end where it re-connects with the oceans and the sky. We are who we are as individuals, both as the product of what happens to us, and the product of what we choose to make of what happens to us. We are the masters of our own house. And we are all equally connected members of the human family.

My personal journey continued. I was determined to finish my schooling. this lead me to undergraduate studies, my law degree, and I went on to do graduate studies in law at the London School of Economics and Political Science in the UK. While there, I learned to appreciate the scholarly opportunities presented by pubs, tapas bars and bungee jumping. And no, I’m not kidding. that was an introduction to the fact that justice can be a technical word that provides a vocational interest or it can be a calling, a commitment to the tools of betterment for many.

I was called to the bar - the legal kind - in Ontario in 1996. In 1997, I traveled across Canada from East to West Coast across 5,400 miles of highway at the zooming speed of 7 miles per hour. It took 197 days. 197 days of talking to people, learning and lecturing and hoping to raise public awareness. The journey continues. I have been fortunate to maintain a law practice, continue to write, and most recently I have had the opportunity to work with the Canadian Parapalegic Association. As Tennyson wrote, though much was taken, much abides. Or As Senator Ted Kennedy said in 1980, right after quoting that same poem of Ulysses, ‘For all those whose cares have been our concern, the work goes on, the cause endures, the hope still lives, and the dream shall never die.’

What I have learned over these past 27 years is that the most precious gift that a civil and civilized society can grant to its individual citizens is that of dignity. By all means, dignity should be a right. But so long as racism is tolerated, sexism is tolerated, ageism is tolerated, so long as the sick, the poor of purse, the poor of mind, or the disabled are shunned or in any way not dignified - how can we say dignity is a right? It must be a gift.

But what do I mean by dignity? The word might summon up images of stiff English butlers delivering stiff scotches to stiff-backed retired colonels with stiff mustaches protruding over very stiff upper lips. That’s a very nice image, but not exactly what I mean by dignity.

The American Declaration of Independence phrases it brilliantly: that a self-evident truth is that all men are created equal with unalienable rights - that word again - to life, liberty and the pursuit of happiness.

Canada defines things more legalistically, perhaps as a result of our Charter of Rights and Freedoms in the Canadian Constitution only having been written in 1981. Politicians and lawyers had more flair in the 18th century. Nonetheless, section 15 of the Charter proclaims: ‘Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.’

So there you have it. THE U.S. Declaration of INDEPENDENCE says it is so and our Constitution says it is so - therefore it must be so. We can all move on to other things. But obviously it is not so. We are but poor human beings and so require further explanation and definition.

My sense of dignity - and that of several philosophers during the Enlightenment in case you don’t want to just take my word for it - is that human dignity is the primary social and personal value. The value of dignity and its supremacy is why we don’t have slaves any more. There is no dignity in being a piece of property.

But we must define this even deeper. Dignity as a concept or as a theory is realized through individual freedom. That freedom is manifested and brought to life through meaningful decision making and exercise of individual responsibility. and that is something we must deliver.

But again, we require a still deeper definition.

The British playwright John Guare wrote a wonderful play called Six Degrees of Separation based on the proposition that everyone on Earth - everyone - is connected by no more than six relationships. You know someone who knows someone who knows someone who knows someone who knows someone who knows Nelson Mandela, Tiger Woods or Britney Spears. And why do I feel that the last degree of separation is always Larry King? Please forgive the joke.

But, I define Dignity as a gem with six facets, or Degrees. Not degrees of separation - this time they are degrees of inclusion, that will eliminate exclusion. They are:

1) Dignity in Public Perception

2) Dignity in the Community

3) Dignity in Law

4) Dignity in Public Policy

5) Dignity of Self

and 6) Dignity in Future

Each of these components are equal to each other of these components. It is only acting in concert with one another that a full symphonic rendering of equality can be created that will contrast the current dissonance, anger and fear that perpetuates the marginalization of individuals in the disability community.

Let us look at each of these six degrees of Dignity individually.

Dignity in Public Perception: We may as well deal with the most insidious degree first. What is the public perception of people with disabilities? I am willing to wager that many in this audience are assuming that I am about to decry ableist insults and crudely comic characterizations. And you would be partially right. I decry those as surely as I decry any of the prejudices that mine the path of human progress.

But there is an insidious public perception as well: that people with disabilities are weak, powerless and need help. I remind you of the quote from Pierre Trudeau: "I don’t need politicians with special powers to protect me, because I’m no weaker than you are and I don’t need them to protect me."

This perception can have negative implications when it comes to the delivery of medical research dollars. The perception of disability=weakness leads to the conclusion that the only thing that can help is a cure. Cures have been and will be wonderful thing. Naturally, if one of the distinguished surgeons in this room came up to me and said, ‘Dave, I have a cure for your spinal cord injury’ obviously I’d be pleased. I’d say I’d be jumping up and down with glee, but none of us needs bad puns.

But a cure is a very, very narrow target on a range of indeterminate length. 5 million CANADIans have a disability and how many of them will see a ‘cure’ in their lifetimes? Some, a few, a certain percentage - but in the meanwhile they are all living a lifetime. You see, a cure is only one cog in an ever expanding life enhancing wheel. A cure - while an admirable goal - does not address needs such as manageable tranportation, available housing, accessible educational opportunities, attention to personal needs and admission to leisure and entertainment facilities to name just a few.

So long as the public perception of people with disabilities is that their lot can only be improved by means of a medical solution, that will leave the vast majority of the disabled community in social stasis ,and that simply is not acceptable to intelligent people who want nothing more than the same equal rights to prosperity and happiness as their neighbours.

Speaking of neighbours, the second dignity is that of Dignity in the Community. The community issues for people with disabilities goes well beyond such visible symbols as ramps and accessible transportation. Rather, what I am referring to is the Independent Living Movement where a person with a disability has the same opportunities to earn a wage, have a career and return to his or her home each night. These are all things that most of us take for granted in our daily lives, but to deny the opportunity to others - as we have seen, the employment rate is but half of the majority of Canadians - is a situation that requires the same metaphorical call to arms as the Civil Rights movement in the 1950s and 1960s.

About now, you may be thinking that what I am discussing is a huge task for any nation or peoples. I would never claim it to be anything else. But as I was thinking about the 1950s and 1960s I also started thinking about the third Kennedy brother - John Kennedy, who has not yet been quoted in this address. I quote the Kennedy brothers not because they are universally loved - we Canadians DO spend much of our leisure time watching with interest the political tides turn to our south. Rather, friend or foe must agree that the Kennedys symbolized an absolutely beatific certitude in the greatness of people - that no challenge is too great for a nation that chooses to face up to it and attacks it with their will, their intelligence and their might.

John Kennedy said, the year before he was elected President: ‘The Chinese use two brush strokes to write the word 'crisis.' One brush stroke stands for danger; the other for opportunity. In a crisis, be aware of the danger - but recognize the opportunity.’ The danger in this case is to allow nearly 2.3 million Canadian citizens - the unemployed members of the disability community - to exist in isolation and near-poverty. That is a tremendous drain on political and economic resources. The opportunity rests within the vision of enabling them to be productive, to help to grow this country.

The second quote from John Kennedy comes from a 1962 speech. At that time, Kennedy said, "The great French Marshall Lyautey once asked his gardener to plant a tree. The gardener objected that the tree was slow growing and would not reach maturity for 100 years. The Marshall replied, 'In that case, there is no time to lose; plant it this afternoon!'" Time is a hindrance. We must not let it be a permanent barrier.

Clearly, there are legal aspects to all this. This leads me to the third degree of dignity: Dignity in Law. There has been progressive judicial decision making to assist people with disabilities in achieving equality. Key among these advances has been the evolution of the legal duty to accommodate, but this should be seen as a first step rather than an end in itself. It would be pure folly to rely exclusively on pronouncements from the Supreme Court OF CanadA to achieve full equality for people with a disability while ignoring the dynamic opportunities guaranteed by implementing the other five degrees of opportunity. Besides, c HARTER CHALLENGES take time. And time, as I have said, is a hindrance.

Inevitably then we are led to Dignity in Public Policy. This is where the politicians come in. But within what sort of framework should the politicians act? The United Nations put forward a template in the form of the following test for a member state to meet its obligations under the Covenant on Economic, Social and Cultural Rights with regards to persons with a disability. The Member State must:

1) Do much more than merely abstain from taking measures which might have a negative impact on persons with disabilities. (In other words, ‘benign neglect’ is not an acceptable policy.)

2) Take positive action to reduce structural disadvantages and to give appropriate preferential treatment to people with disabilities in order to achieve the objectives of full participation and equality within society for all persons with disabilities. (Just as in the Civil Rights movement, yes there will have to be for a time pre ferential treatment in, for instance, educational enrollment. Only in that way can the boundaries confining the disabled community begin to disappear until the ‘community’ itself disappears within the greater community of the nation.)

3) Employ additional resources for this purpose. (Yes, this is going to cost some money. I invite you to think of it as investment in 25 million under-employed individuals who if given the tools will return that investment a hundredfold.)

And 4) Provide a wide range of specially tailored measures.

This is not in opposition to the Trudeau mandate of, ‘I’m no weaker than you are.’ Rather, it is a realistic and pro-active recognition that no matter how much good will and determination grows in the greater community, there will be those who will still stall progress for reasons of fear, near-sightedness or simple ignorance. As one of America’s greatest generals, George S. Patton said, ‘Lead me, follow me, or get out of my way.’

Governments of course love to create Commissions, Tribunals and Study Groups and call them a solution. If spun correctly, the appearance of doing something can leave the impression of doing something. Certainly ideas are great things and study is important - but without action ... it would be like one of you going to medical school for years and learning your craft to the point of excellence only to never be allowed to graduate! What a glorious waste of time and resources would that be!

So, we must put our governments to the test as well. I have seen various tribunals and commissions put in place and invite you to share along in my personal test of their efficiency.

1) Is the government of the day deferring responsibility for comprehensive disability policy while appearing to be addressing the issues?

2) Does the Act or Law or Commission amount to pronouncement without enforcement?

3) What is the jurisdiction of the Tribunal, and what are the limits to its scope?

4) Will the government politicize the appointment process because it retains control? (Governments and their appointments in a lot of ways are like the old definition of a genius. A genius is someone who absolutely agrees with everything you say.)

5) Will the Tribunal or Advisory Council (there are many terms for these bodies) be adequately funded?

6) Will the critical capacity building role of disabled persons organizations be shoved aside by the new administrative bodies? (Are we just re-inventing the wheel?)

The fifth degree of Dignity is Dignity of Self. You might term this the Pursuit of Happiness section. Dignity of Self is the development of such vital life skills as rational decision making, freedom of choice, self-respect, physical and psychological integrity, and personal empowerment. In practical terms, anyone requires these skills or abilities in order to love, to work, to enjoy, to laugh and to endure the slings and arrows of outrageous fortune.

If the other Dignities are acted upon in concert, Dignity of Self will develop naturally. And here again, this is not about weakness. This is about removing barriers and boundaries to allow people the opportunity to completely develop as confident, strong human beings.

The final Dignity is Dignity in Future. Just as all the great causes are on-going struggles: the cause of democracy, the cause of peace, the cause of civil rights, so too will it be for the cause of dignity. The United Nations last year put forth its Convention on the Rights and Dignity of Persons with a Disability. In speaking in favour of the implementation of this Convention, the former Attorney General of the United States Richard Thornburgh said the following:

The UN Convention represents important principles that my fellow Americans hold dear—basic recognition and equal protection of every person under the law, non-discrimination, the fundamental importance of independent living, and the right to make basic choices about our lives. We pioneered these basic principles under American law. We in the United States are demonstrating that people with disabilities can participate fully in our democracy. We are demonstrating that society, as a whole, is richer and better off when people with disabilities are included fully in every aspect of life.

I think Attorney General Thornburgh summarizes the great unifying principle that can advance the 600 million people with a disability worldwide . In so doing, a world will be created committed to freedom ... decency ... justice ...and dignity for all. My friends, the dream lives on.