 |
 |
 |
 |
 |
 |
 |
 |
|
|
|
|
|
|
|
|
 |
 |
 |
 |
 |
 |
 |
 |
 |
|||
 |
||||||||||
 |
 |
 |
||||||||
October 24, 2009
SMX Convention Center , SM Mall of Asia , Pasay City
by
LEILA M. DE LIMA
Chairperson
Cornerstone of Hope: U.N. Convention on the Rights of Persons with Disabilities
Good morning to all of you.
First of all, let me thank Autism Society Philippines , for inviting me to be here with you, today. It is an honor to take part in this event, a conference which has gathered together so many individuals and organizations, all tireless advocates for the rights of persons with disabilities.
We come from different backgrounds. We are teachers and therapists, doctors and family members, researchers and community organizers, entrepreneurs and government officials, and more.
We carry out our advocacies for different reasons. Some of us are here because our work directly involves looking for ways to make life better, for persons with disabilities. For this, we may turn to technology or education, research or therapy, or other strategies.
On the other hand, some of us are here for more personal reasons. We are here because of a brother or sister, a son or a daughter, a loved one.
In fact, many of us who campaign for the rights of persons with disabilities, do so because the love that we feel for a family member, compels us to act. We are moved to go beyond our comfort zones, reach out to complete strangers, read and research, organize and become active.
We cannot help but do something. We cannot be satisfied unless we know for sure, that we are doing everything in our power, for a loved one. We cannot rest easy otherwise. They deserve no less than that.
It becomes especially important for us to organize and act in a collective manner, because our society and the world at large, are still a long way off from the ideal. Full and meaningful respect for the human rights of persons with disabilities, is not yet the reality on the ground.
In fact, the world can be quite a difficult and even hurtful place, where instead of finding support, we come across ignorance, apathy, and at times, even cruelty. And these problems are larger than any individual person or family, which is why organizations which allow us to act together, such as Autism Society Philippines, are so important.
Much knowledge and understanding is still missing in the world. As we work for the human rights of persons with disabilities, we tend to find that some of the resistance to our efforts comes in the form of a lack of information, ill-conceived opinions, or prejudices and misinformation, handed down from one generation to another.
At times, opportunities are not made available to persons with disabilities, because of the false belief that a disability necessarily makes a person unproductive. Some persons continue to believe the myth, even to this day, that what makes a person different, somehow causes that person to be less capable.
For instance, there are individuals who continue to find it hard to believe, that someone with autism spectrum disorder, could go to a regular school. Or that a person with Asperger’s Syndrome, could hold down a regular job.
We know that nothing could be farther from the truth. In fact, just 3 days ago, a news article online featured Mr. Lane Henderson. He has Asperger’s Syndrome, but that hasn’t prevented him from finding employment. Instead, he works at the Innovation Park of Florida State University, making 3-D models and optical equipment, as well as perfecting telescopes for different functions.
His story is not surprising, because we know that persons are so much more, than the disabilities which affect us. The sum of our parts is so much larger and more comprehensive, than any one difference or disability. We know this because we witness this truth everyday, in our work and in our homes.
Therefore, we must continue to confront ignorance with knowledge, and misinformation with the truth. The gloom of decades and more of accumulated falsehoods and fictions, regarding persons with disabilities, must be swept away by the bright light of awareness and education, a light which we must shine, even into the farthest and most remote corners of our society.
Another problem that we face in our work involves apathy. Many of the difficulties which confront persons with disabilities, on a daily basis, happen not because people are mean or malicious. They occur simply because some people cannot be bothered to care about someone they do not know.
Apathy is a problem which is as old as our societies. It is a laziness of the mind and of the heart, where a concern is answered with inaction, and where a need is responded to with nothing. It is a rot which is eating away at the fabric, which holds our society together.
For persons with disabilities, apathy is something that might be experienced in a classroom or in a hospital room, perhaps while commuting or while eating out. It becomes a prospect whenever someone must rely on other persons for information, assistance or support.
We know that, at times, small things matter greatly. Sometimes distress or a difficult situation might be avoided or delayed, if only a way can be found to create a distraction, or if a simple request can be quickly accommodated.
That is why it can be so infuriating when all that is required of a stranger, is merely a small measure of initiative, extra effort, or concern, when even a relatively token act could mean so much, and when that person fails even that simple test of empathy.
That said, we know that apathy is neither inevitable nor permanent. And it does not exist in all persons. We know that people who have never had a loved one affected by a disability, may very well nevertheless become, some of the most ardent advocates for persons with disabilities. Our gathering here is evidence of that fact.
Not all of us here have loved ones affected by autism spectrum disorder. Not all of us here have a personal or family connection to someone with a disability. And yet all of us here are passionate about this issue. All of us here care deeply about ensuring that persons with disabilities are allowed the freedom and the opportunity, to live full, rich and meaningful lives.
Together, we can turn back apathy, and raise the level of genuine concern and empathy, in the rest of the population. We can find ways to create personal connections, between persons with disabilities and the public at large. In my view, Autism Society Philippines is doing much in order for this to happen.
The website of Autism Society Philippines is regularly updated with posts, on those who advocate for persons with disabilities, useful information, relevant events, and especially the stories of persons with autism spectrum disorder (ASD).
This does a number of things. The website helps to educate the public at large regarding ASD, and it also helps to organize those of us who are advocates and human rights defenders. But in addition to that, the website precisely makes it possible for people, to develop the personal connections, which undo apathy.
Readers may be inspired by the experiences of those who tirelessly work to further the rights of loved ones, or complete strangers. And visitors may be moved to action by the stories of those who experience autism spectrum disorder first-hand.
In fact, the Autism Society Philippines website was recently recognized for the high caliber of its content, when it was named the Best Advocacy Blog in 2009, by the Philippine Blog Awards.
We need to tell our stories and share our experiences. We need to open other people’s eyes, help them to understand, but more than that, help them to care. The internet offers us an opportunity to reach out to the wider world, and to give persons with disabilities and the people who look out for them, a stronger voice in the community.
If you can email, you can set up a blog. If you don’t know how, I am certain that there are many caring individuals who will be willing to help. There is no extra cost to setting one up, beyond the need for a computer and an internet connection.
On a daily basis, we experience just how amazing and wonderful, individuals with ASD can be. At the same time, we are no strangers to the difficulties and the complexities involved as well. Our stories need to get out there. The realities of ASD must begin to replace all the myths and misinformation, especially in our social and political discourse.
We especially need our government leaders, legislators, local government officials, and their constituents, as well as business leaders and their customers, to understand ASD and to care. As this continues to take place, we will begin to see meaningful change, not just in the treatment of individual persons with disabilities, but a much wider change, a change in the structures and frameworks of our society, which affect all persons with disabilities.
This goes to the idea of institutional discrimination. It is the idea that discrimination against persons with disabilities has become embedded in some of our laws, government programs and policies, as well as other organizational and business procedures, and ways of doing things.
These are the school policies for the non-admissions of children with ASD, or the health care policies for communities, which do not take persons with ASD into account. These go beyond mere individual decision-making. Instead, these are ways of doing things which, at times, seem to be set in stone.
These laws, ordinances, policies and programs, are then repeated across localities and institutions. That is why they have the potential to negatively affect so many people. And there is an inertia here, which may make it difficult for the status quo, the current way of doing things, to be changed.
This is an inertia, however, which we must overcome, because some of the worst discrimination against persons with disabilities is institutional. Again, this systemic violation of rights does not merely affect specific individuals alone. Instead, it has the potential to affect all persons with disabilities, or all persons with autism spectrum disorder.
In the past, I’ve referred to the work we do as a long and difficult road, whose end we cannot yet see. And at times, it can be a little discouraging, when discriminatory laws, policies or procedures, continue to remain in force. But I continue to remain hopeful. I remain optimistic because I can look to the recent history of the human rights struggle, for solace.
It was not that long ago, when women were routinely denied the right to vote. Laws and government policies prevented the exercise of their right of suffrage. But those laws and government policies were swept away.
It was not that long ago, when the ugliness of racism was the law in many parts of the United States. Anti-miscegenation laws were in place, which made it illegal for an African-American man to marry a white woman. Government policies set up a school system where African-American kids and white kids went to different schools, offering significantly different qualities of education. But those laws and government policies were also swept away.
It was not that long ago, when the Philippines was ruled by an autocratic President, whose administration routinely ignored respect for human rights. But he too was swept away in a non-violent People Power revolution. And that same People Power revolution would go on to inspire protesters, who swept away tyranny in South Korea and Poland, which then inspired the further spread of democracy, in the Baltic States, in East Germany, and in Czechoslovakia.
Looking back gives me a reason to look ahead with renewed hope. The recent history of the struggle for human rights, allows me to believe that discrimination against persons with disabilities, will also be swept away.
Now, let me go into a bit more detail, regarding how else we can address practices and policies, which discriminate against persons with disabilities.
At the individual level, we can appeal to people’s better natures. Let us remind them of the basic truths. That we are each others’ keepers. That whoever saves a person, saves all mankind. And that as fellow human beings, we are all equal, we all possess an inherent dignity, and we all have human rights, which must be respected and protected.
We can also appeal to the enlightened self-interest of individuals. Let us remind them that ours are shared communities and a shared society. When we protect the rights of one group of people, such as persons with disabilities, the human rights of all other persons are strengthened as well. On the other hand, when the rights of one group of people are undermined or weakened, this threatens the rights of everyone else.
Finally, we can remind individuals, and the leaders and members of institutions, that there is in fact an obligation, found in national and international law, to respect the rights of persons with disabilities. When all else fails, when appeals to better natures and self-interest appear to have no effect, then knowledge of human rights law becomes that much more important.
One key piece of relatively recent international law is the United Nations Convention on the Rights of Persons with Disabilities, or the Disability Convention, for short.
In one of the training sessions held for members of the Commission on Human Rights, the resource person was discussing this U.N. Disability Convention. He said that the nickname given for this convention was “DisCo,” basically the first few letters of each word, in the phrase, “Disability Convention.”
He said that he liked the nickname, “DisCo,” because in his mind’s eye, he would imagine persons with different disabilities, all gathered in one place, dancing and having fun. And that image, of these many persons with disabilities, dancing in one place, is one that I want you to consider too.
This image contains one important thing to remember about the Disability Convention, or the DisCo. It contains a very broad and inclusive provision, describing who are considered persons with disabilities. The description is not limited merely to persons with physical impairments. It also encompasses persons with mental, intellectual and sensory disabilities.
One of the reasons the Disability Convention contains this fairly comprehensive description, is the fact that when it was being drafted, the process included inputs from persons with disabilities themselves. Now, this was quite an important development.
In the past, when international treaties were being written, the persons at the table, carrying out this work, tended to be limited to government representatives, who of course possessed only a limited point of view.
We have come some way since then. The Disability Convention was adopted just recently, in 2006, so as far as treaties go, it is relatively state-of-the-art.
We learned from the experiences of drafting treaties in the past, and the Disability Convention embodies many of the lessons learned. And one of those lessons is that, the people who will be most affected by the treaty, must have a hand in its drafting. So when the DisCo was being written, persons with disabilities (PWD’s) were there, and were participating.
So again, the Disability Convention was drafted with PWDs at the table, and that is one reason its description of PWDs is so inclusive and comprehensive, and generally better.
Now, before I continue to discuss the Disability Convention, let me address a number of questions, which tends to cross people’s minds at this point. What use is the Disability Convention? What good will it do for our advocacies? Will any concrete benefit arise from the DisCo’s use?
In answer, let me say this. The Disability Convention is one other tool at our disposal, in the effort to promote the rights of persons with disabilities. The more tools we have available, and the more options we can avail of, the better. More than that, however, the DisCo is a particularly compelling and potent instrument. Let me explain why.
For far too long, the rights of persons with disabilities have been viewed through the prism of charity. A government official is approached in order to seek action, assistance or support. In too many cases, however, this has been perceived by the official, to be a mere request for compassion or sympathy, for persons with disability. The impression has been that government leaders may either choose to grant the request, out of a sense of benevolence, or they can choose to withhold the assistance, for some other reason.
There is a need to end this false impression, that some government officials may have, about the rights of persons with disabilities. Human rights are not optional. They are not about charity, or mercy, or benevolence.
Instead, human rights are found in laws, especially international law. They are, in fact, mandatory. They create obligations and duties which must be carried out, in good faith.
Here’s another way to look at this. The Philippines has ratified many international treaties. There are treaties among countries which regulate such things as taxes, air transport, free trade, extradition, cooperation in law enforcement, investments, and more. These treaties are binding. By ratifying these treaties, the Philippine government has committed to abide by the provisions they contain.
Human rights treaties, such as the Disability Convention, work the same way. The Philippine government has ratified the DisCo. In a similar fashion, it too has committed to abide by the provisions in this convention.
That, for me, is a game changer. It shifts the discussion from benevolence to obligation, from sympathy to duty.
Imagine someone saying, “I want to have a quality education.” Now compare that with someone else who says, “I have a right to a quality education, and the government has the duty, under international law, to provide me with one.”
Again, there is a discernible shift here. And it is something to seriously consider, everytime you write a letter to a government official, or to the media.
The Disability Convention contains obligations. Leaders and members of government must be informed regarding these duties, and reminded to abide by them. Members of our advocacies must similarly be educated regarding the provisions of the DisCo, so that we can better make use of this international treaty in our work.
And information must be disseminated to the public at large as well. Creating a groundswell of public support for the rights of persons with disabilities, is one of the best ways to influence our leaders. Members of the public make up the constituencies of politicians. Their constituencies vote them into office, every few years. So politicians must listen, in some fashion or another, to their voters, in order to retain their positions. Public sentiment and public support can lead to political pressure, which can then lead to institutional change.
Now, unfortunately, I do not have the time to go into a full discussion of the Disability Convention, although I would have liked to. Perhaps some future event could be set up where we can go into the provisions of the DisCo more thoroughly.
In addition, I would ask that you seriously consider going online later tonight, and do a quick Google search for the United Nations Convention on the Rights of Persons with Disabilities. The text of the Convention is freely available online, and you will also be able to find a wealth of commentary and discussion on the ramifications of this international treaty, for persons with disabilities. The time you spend going through this material, will be time well spent.
Instead of going into a provision-by-provision discussion of the Disability Convention, I will focus on a few key points, arising from the Convention.
I already mentioned earlier how the DisCo makes use of a broad description of persons with disabilities. It applies not only to persons with physical disabilities, but also to those with mental, intellectual and sensory impairments.
One realization here is that there is much room for coordination and collaboration, among the many advocates for persons, with physical, mental, intellectual and sensory disabilities.
There is the potential to create broader alliances, which share expertise and resources, which build on one another, and which strengthen each other. And in certain instances, this could give rise to one much louder voice out of many, and one shared area of common advocacy, which will be much more difficult, for leaders, policymakers, and the public, to ignore.
There is, after all, much common ground, with respect to issues of dignity, autonomy, non-discrimination, participation, social inclusion, respect, acceptance, opportunity, accessibility, equality, and identity. And this common ground embodies future possibilities, in terms of advocacy.
Let me now go through some of the general obligations contained in the DisCo, to give you more of an idea of what it contains.
The government commits to ensure and promote, the full realization, of all human rights and fundamental freedoms, for all persons with disabilities, without discrimination of any kind, on the basis of disability.
Laws, regulations, customs and practices which discriminate, must be modified or abolished. Take note that this does not just mention laws. It also mentions customs and practices which discriminate, so the coverage is quite broad.
All policies and programs must take into account, the protection and promotion of the human rights of PWDs.
All appropriate measures must be taken to eliminate discrimination by any person, organization or private enterprise. This is very important because this provision does not just mention the government. It also applies to individuals and private enterprises. So the government also has a duty to step in, and regulate private entities, in order to end discrimination.
Information, assistance, support services and facilities must be made accessible to persons with disabilities.
In addition, nothing in the DisCo can be used to affect or downgrade other provisions of law, which better realize the rights of persons with disabilities. Essentially, the Disability Convention can only make things better. It cannot be used to make things worse.
Now let me run through some of the key headings of the Disability Convention, to give you a better idea of some of the areas that it discusses.
Section headings include: women with disabilities, children with disabilities, awareness-raising, the right to life, humanitarian emergencies, including natural disasters, equal recognition before the law, access to justice, liberty and the security of person, freedom from cruel, inhuman or degrading treatment, freedom from exploitation, violence and abuse, living independently and being included in the community, personal mobility, freedom of expression and opinion, and access to information, respect for privacy, respect for home and the family, education, health, work and employment, adequate standard of living and social protection, participation in political and public life, and participation in cultural life, recreation, leisure and sport.
The section on humanitarian emergencies is especially relevant, after our experience with the recent typhoons, which wreaked so much havoc on our country, ending lives, damaging crops and homes, and causing dislocation and despair. This is especially important for persons with disabilities, who do not have a support system of family and friends, or who are also in a state of poverty or financial distress.
Freedom from cruel, inhuman or degrading treatment is especially important, because we know that there have been times, in our history and even today, when persons who are different have been treated as less than human beings. This is utterly unacceptable, and something that I absolutely will not stand for.
We also see here themes pertaining to recognition, access, inclusion, and participation. We must never allow persons with disabilities to be kept hidden in back rooms, to be treated as if they were sources of shame or embarrassment. That type of thinking must be consigned to the dustbin of history. That type of treatment must be eliminated once and for all.
One final thing on the Disability Convention. It is a record-breaking international treaty. Again, it is the first convention that had full consultation and participation by civil society. It is also the first human rights treaty of the new millenium. Furthermore, it was the most rapidly negotiated human rights treaty, in the history of international law.
And on the first day that it was opened for signature, it received over 80 signatures, the highest number of countries to sign a U.N. Convention, on its opening day.
Now, what does this all mean? In my view, this represents a growing consensus, all around the world, and across the various sectors of society, governmental and non-governmental, academic and at the grassroots, that we must act to end discrimination against persons with disabilities. There is this growing understanding and a growing acceptance of what needs to be done, and the Disability Convention is one of the instruments created to address this problem of discrimination.
What this means is that all of us here today, all of us who advocate for the rights of persons with disabilities, in our own particular ways, we are all part of a global movement, founded on a common goal, and a growing sense of urgency. The collective work that we do transcends geographic boundaries, national borders, and a diversity of cultures and historical experiences.
We are all a part of this. Our advocacies are bound up in this global tapestry of networks and alliances, knowledge and expertise, experiences and continuing action. Like it or not, whether we are aware of it or not, our efforts are not only changing our communities and our society. They are helping to change the world.
That said, at the end of the day, I do not need to be part of a world-changing endeavor, in order to remain motivated. At the end of the day, I go home to the only motivation I need.
Israel is my son, my pride and my joy. I do not need to tell you of the emotions that well up inside of me, when he smiles, when he expresses his affection, and when he seems to be content. I do not need to describe to you how much he matters. I do not need to tell you of the lengths to which I would go, to keep him safe, to make him happy, and to allow him a full, rich and meaningful life.
Time flies by so fast however. Months become years, which become decades, and I know that, no matter how hard I wish for it, I will not always be around for Israel. That is why this work, and the work done by you, and Autism Society Philippines, mean so much. We work to strengthen the protection of the human rights of persons with disabilities, so that our society will become more humane, more just, more inclusive, and so many other necessary things. We are all working very hard, so that our society will become a better place, for my Israel, and for your friends and your loved ones.
In the end, that is what we are after. And looking out at all of your faces, the passion and dedication etched on each of them, the willingness to give this cause your all, I am certain that what we all long for, will indeed come to pass.