- Ambassador Don MacKay, Chair Ad Hoc Committee
The adoption of the Convention on the Rights of Persons with Disabilities,
by the United Nations General Assembly on 13 December 2006, marked
the end of a long journey by civil society.
For many years the international disability community had tried to
persuade States that a new convention was required to ensure the full
enjoyment of human rights by persons with disabilities. It was an
uphill battle, but once States had finally accepted that proposition,
we saw the development of a remarkable negotiating partnership between
civil society and the Member States of the United Nations.
As a result of that negotiating partnership, the text of the Convention
itself also bears the firm imprint of civil society.
The Convention on the Rights of Persons with Disabilities is a comprehensive
and detailed document, and civil society bears much of the responsibility
for that. In contributing to its negotiation, disabilities organisations
had in the forefront of their minds the practical problems faced by
their constituencies. They wanted to ensure that real world problems
were carefully dealt with in the Convention, and that it rose above
the mere theoretical.
The need for that was clear. The existing generic human rights instruments
had fallen far short in their protection of the human rights and fundamental
freedoms of persons with disabilities. For the most part this was
not due to a deliberate avoidance by States of their obligations.
During the negotiations, civil society emphasised the need for a paradigm
shift in the way that governments and societies deal with matters
relating to disabilities. Central to the Convention is this paradigm
shift in the treatment of persons with disabilities, from being
objects of the law to being subjects of the law with the same rights
as everybody else.
Implementation will also require a continuation of the remarkable
partnership that developed between governments and civil society.
The Convention is quite specific in requiring governments to actively
involve disability organisations in the development of policies and
action to implement this Convention. Good practice suggests that governments
would do this anyway. But governments need to move beyond the just
the black letter of the law, and to ensure that this happens in a
meaningful way. Policy development will benefit from that, as will
our societies overall.
Preface - Ron McCallum AO, Vice-Chair CRPD Committee
It is essential to appreciate that the movers and shakers
for the CRPD were civil society, that is DPOs and persons with disabilities.
Without the expertise and pressure from civil society which changed
the minds of many governments, I venture to conclude that we would
not have this Convention at the present time.
This splendid volume
tells the story of how the CRPD was negotiated.
[T]he narratives set forth between its pages, are viewed from
the varying perspectives of the authors of its chapters, and these
contributions piece together the article by article negotiations of
the CRPD. These essays which are both analytical and explanatory,
give the background of the articles of the CRPD.
As one of the twelve inaugural members of the United Nations Committee
on the Rights of Persons with Disabilities, whose primary function
is to monitor the CRPD, this volume is a splendid tool for those of
us seeking to operate the CRPD.
Introduction - Maya Sabatello &
Marianne Schulze, editors
The Convention on the Rights of Persons with Disabilities (CRPD
or the Convention) entered into force on May 3, 2008.
It is the first human rights treaty to be adopted after the end of
the Cold War; the first one to be adopted since the highly successful
1993 World Conference on Human Rights and the Vienna Declaration and
Programme of Action that that Conference yielded; the first one to
be drafted and adopted at the beginning of this century; and the first
human rights convention to be open for signature to regional integration
organizations. The establishments of the UN High Commissioner for
Human Rights (OHCHR) and of National Human Rights Institutions (NHRI)
since the World Conference have also been instrumental developments
in the disability context. The rise of transnational civil society,
which includes not only Non-governmental organizations (NGOs), but
also, inter alia, peoples movements, formal and informal associations,
grass-roots coalitions and indigenous peoples organizations,
as well as media and communication technologies, have significantly
strengthened the national and international discourse on the issue.
It is the combination of these developments that have enabled the
dialogue on disability rights to take place. They enabled the transnational
disability-rights movement to plant roots and later on, to mushroom
to unprecedented levels in an otherwise unwelcoming world. They enabled
the global community to think and to re-think about what disability
is and how we treat-or how shall we treat-our members of society who
are prone to be more vulnerable. Moreover, they enabled the global
community to reflect on what universal notions of human rights, subjectivity,
and dignity mean at the beginning of the twenty-first century.
The United Nations (UN) eighth core human rights
treaty marks a shift that elevates persons with disabilities from
being remarkably invisible within human rights discourse to being
protected by a multilateral treaty that frames all human rights as
accessible and inclusive. Very much in line with the seminal report
written by Gerard Quinn and Theresia Degener, two internationally
known disability rights experts and leaders for the first working
session of the convention process, the Convention replaces the hitherto
prevalent medical approach to disability with the social model as
the basis for the rights of persons with disabilities. Rather than
focusing on impairment as a personal trait that needs to be corrected,
and possibly eliminated, it emphasizes the need to remove
the social and environmental barriers that exclude persons with disabilities
from full and effective participation in society and enjoyment of
all human rights. The Convention comprehensively examines the rights
of persons with disabilities, so as to ensure a human-rights-based
approach to inclusion; as an historic first, it also enshrines general
principles, among them the need to respect difference.
In light of this achievement, it is timely and important to step back
and reflect on the path that has brought about this paradigm shift.
What were the successes? What are the shortcomings? And what caused
As the Convention has entered into force, with 110 countries as well
as the European Community having already ratified it and signatures
from more than 40 other states, there is perhaps no better time to
evaluate the drafting process of the first human rights treaty of
the twenty-first century.
The adoption of the Convention was preceded by at least two decades
of activism. Although the most visible origin of the disability-rights
movement is rooted in Western NGOs and individual activism, it was
not long before disability activism spanned across the globe. An intensified
processes of democratization, a significant rise in the involvement
of the so-called third force (that is, civil society)
in international affairs, globalization, and the evolvement of new,
high-tech means of communication have all played major roles in this
trend. Information sharing within and across states, as well as between
civil society organizations (CSOs), states and the UN bodies that
are responsible for the promotion of human rights, have opened the
door for many actors from smaller, newer, and less powerful nations
to raise their own voice in a manner previously unheard of. The culminating
impact was significant. While historically diverse andlike many
other organizations with shared interestsoften prone to disagreements,
through their representative organizations (often called Disabled
Peoples Organizations or DPOs), a variety of NGOs, and individual
experts, persons with disabilities played an instrumental role in
the effort to mobilize the international community to take disability
rights seriously, particularly during the drafting process. More than
that, civil society participation in the process exceeded by far previous
cases of involvement in the formulation of international human rights
treaties. It has, in fact, taken the idea of new diplomacy,
referring to civil societys involvement in international processes,
to a new level.
A variety of NGOs, and individual experts, persons with disabilities
played an instrumental role in the effort to mobilize the international
community to take disability rights seriously, particularly during
the drafting process. More than that, civil society participation
in the process exceeded by far previous cases of involvement in the
formulation of international human rights treaties. It has, in fact,
taken the idea of new diplomacy, referring to civil societys
involvement in international processes, to a new level.
The work of civil society organizations was also highly effective.
Much of the work of the disability-rights movement was organized through
the International Disability Caucus (IDC), established as the official
body to represent the disability community, and characterized by a
rather loose structure. Mobilized by NGO representatives that attended
the first session, the International Disability Alliance (an international
umbrella group established in 1999; IDA), the Centre for Rehabilitation,
and Landmine Survivor Network held the dominant leadership. Learning
from the experience of the childrens rights movement, but also
from the more recent efforts of NGOs on international fora for the
International Campaign to Ban Landmines and the Coalition for an International
Criminal Court, the goal was to advocate for disability rights as
much as possible in a coordinated manner and by consensus.
At least one Caucus meeting was held daily, and other meetings were
held by the various working groups that were composed to facilitate
civil societys activity. A steering committee was established,
comprised of representatives from the IDA, regional representation,
and other NGOs representatives. The IDC also included a drafting group
to develop joint position statements on behalf of the disability community
(after their approval by the IDC) to be delivered at the plenary meetings.
Additional regional, non-alliance NGOs and communication working groups
were established, and for many of the draft provisions a facilitation
team was appointed (or voluntarily took on the role).
Another interesting and unique characteristic of the involvement of
civil society in the process was evident in the relationships that
developed with states delegates. In addition to unusually open
doors for discussions with DPOs/NGOs, representatives of DPOs
were also included in official state delegations. Furthermore, states
made a point of sending a government representative with disabilities.
The rise of and respect for National Human Rights Institutions (NHRI),
which often included-and were led by-persons with disabilities has
also been important in this context. Indeed, the negotiation of the
CRPD was the first time that NHRI participated and contributed significantly
to the drafting of a core human rights treaty, giving them a prime
opportunity to share their insights and utilize them for the purpose
of a new human rights convention.
The impacts were obvious. For one, persons with disabilities were
made visible. Second, voices from within were in fact
taking over places of power of those from outside, shifting
the dynamics of the negotiations. Indeed, it is this close collaboration
between civil society and states delegates that led some to
believe that without the consent of the disability community, the
Convention would not have been adopted. Thus, having supporting
representatives from within the all-states-institution has arguably
played an important role in the ultimate result.
Naturally, however, the disability community was not free of tensions.
Questions about the authentic representation of organizations
for persons with disabilities (in contrast to organizations of persons
with disabilities) surfaced. Representatives of organizations who
were not only representing disability rights were not always easily
brought into the fold. Disagreements also occurred within the core
disability rights community. Aside from the particular disability-related
interests that the DPOs tried to promote, controversies also arose
with regard to the policies the Convention should adopt. Additionally,
South-North divides were also present. Consequently, while some of
the representatives tried to negotiate their positions within the
IDC, others chose to stay outside. Yet as all of the voices contributed
to the overall result, the implications of this diversity from within
are critical if we are to develop a greater understanding of what
it means to involve transnational members of civil society in UN-level
This book is a first attempt to understand what happened by bringing
together a collection of the many voices that were heard in the process.
While the final chapter of the book proposes a more comprehensive
and observational outlook on the process, including a comparison with
previous negotiations on the international level, the individual chapters
separately discuss how the authors work with-and without-the
coalition of NGOs facilitated their advocacy. Coming from Western
and Southern states, from developed and developing countries,
from a variety of ethnicities and social groups (demonstrating diversity
of gender, age, indigenous and religious backgrounds, etc.) these
authors have in common the many barriers-social, cultural and legal-that
they faced in their advocacy campaigns.
Lex Grandia - Imagine to be part of
To be elected to the first committee to draft a text for the Convention
on the Rights of Persons with Disabilities was a challenge and an
honor for me. At that time I was Secretary General of the World Federation
of the Deafblind (WFDB), a small growing worldwide representative
organization of persons with deafblindness. Later I was elected president
of WFDB. That election to the drafting committee happened in the fall
of 2003, after the second Ad Hoc Committee (AHC) session, where UN
delegates discussed us, but almost without us. We, the Disabled Peoples
Organizations (DPOs), on the way to form the IDC, were permitted to
be in the meetings as observers only from time to time. We observed
that delegates clearly did not have any knowledge or experience in
the disability field and that they could not imagine how it is to
live with a disability. Care, protection,
and vulnerable groups were often-used words. Disability
seemed to be the same as inability.
The negotiations for the Convention eventually came to embrace an
unprecedented role for civil society organizations, including DPOs.
Making this happen required new partnerships among persons with disabilities-among
people who might otherwise have little in common aside from being
defined as disabled by their respective societies. We all have our
own different life histories, educational backgrounds, cultures we
live in, and experience our different disabilities and barriers. We
have to make this understood. I was searching for all our different
qualities developed and our capacities, to combine them and share
them, evolving into a big voice with a lot of contributions to society.
In what follows, I reflect on finding the balance between the wants
and needs of a specific group-persons with deafblindness-and the larger
group of persons with disabilities. Imagine: together we made ourselves
[Initially], we decided to write down the most important bottom lines
of what each organization wanted to achieve. I consulted my member
organizations in the WFDB and professionals working in the field.
I looked at resolutions of formal conferences. For the rest, it was
necessary to use my imagination with the knowledge I have of persons
with deafblindness worldwide. That was not so easy. Persons with deafblindness
are very different. Only a few are totally deaf and totally blind.
Some are totally deaf and have sign languages as their mother tongue.
Most have spoken languages as their mother tongue, being blind or
still having some hearing or vision left. There are persons with deafblindness
with additional physical, intellectual or psychosocial disabilities.
Most persons with deafblindness live isolated in the family or in
an institution, isolated because of lack of communication, information
and mobility. Lack of education has made it impossible for persons
with deafblindness to formulate their rights and needs to be able
to participate in society. Most of the activities with or for persons
with deafblindness were related to entertainment; they were not intended
to get Deaf-blind people to be politically involved. The only clear
message from the worldwide community was: get deafblindness
recognized and mentioned in a convention as a unique disability.
On November 22, 2003 I formulated the following bottom lines for persons
We, persons with deafblindness want to:
Be considered as persons having a separate and unique disability;
Be respected as personalities with our own, individual capacities;
Have a legal status with rights and duties like other citizens;
Get quality advocacy, in case we are not able to speak for
Develop a communication system, a recognized language to interact
with the surroundings, environment and other people;
Get quality and appropriate interpreters and guide services
whenever we need;
Get quality education and rehabilitation at all ages, based
on our capacities;
Chose our own ways of living, alone or with others;
Be a part of a family, to have a family life (or not);
Be persons with self-determination and autonomy;
Be able to read and write, using Braille or large print;
Get information about society, politics, and all kind, we wish
to get according to our personal interest;
Get access to the information society;
Be able to live and organize our daily life with accessible
tools and technical aids;
Have access to our own economy: coins, banknotes, money;
Be able to travel;
Have access to all kinds of art, culture and literature;
Obtain a qualified and satisfying job according to our capacities;
Be political and social active;
Act as artists, authors or other cultural executors;
Develop and govern our own organization;
Develop, and be responsible, for our own service programmes.
One wish I could not formulate well was to have the right to do things
at our own speed (an action against the speedy society).
It is funny to look back at these bottom lines five years after. I
did not really use them later on during the process, but I must have
kept them in mind. Of course, many of them were not specific to persons
with deafblindness, but the lines needed to be translated into the
situation of persons with deafblindness. It was good to see that,
when all of our bottom lines were collected on our mailing list and
discussed at Madrid, that we had a lot in common. During the whole
process one of the big difficulties was to cope with each others
differences within the disability movement. We found out how little
we know about the consequences of our different disabilities. During
our daily e-mail discussions, every day without any break, during
the next three years, we needed to explain ourselves to each other
again and again, including which formulations in a proposed convention
text would benefit one group or harm another. Mutual respect was needed;
the more time pressure we had, the better it worked.
The respect consisted of the acknowledgement of the specific experiences
of persons with each different disability. For example, although some
Deaf-blind persons in my organization also have psychosocial disabilities,
I cannot speak on behalf of persons with psychosocial disabilities.
Rather, World Network of Users and Survivors of Psychiatry (WNUSP)
does. It also required acknowledging that each person is expert in
her/his own disability. So each one needed to explain his/her own
specific situation and be respected for that. As it became clear,
only by listening carefully to each others histories would it
be possible to reach agreement. And we all needed to support this
person when he/she explained the same thing in the AHC Plenary.
Forms of communication were one such instance. No one else present
knew what tactile communication means and how it works. I explained
the different means and modes of communication to the IDC. Better
still, from time to time there were a few other persons with deafblindness
in the AHC sessions, so people could see it and/or experience how
slowly tactile communication works. The explanation was reiterated
in the AHC Plenary, with the support of all DPOs. Ultimately, the
delegation from Uganda insisted on including tactile communication,
and it made its way into the final text. I am not sure why it was
Uganda that did this, though it may be because I was at that time
very much involved in the founding of a national organization of persons
with deafblindness in Uganda. I dont know for sure; I did not
During the process it became important to form alliances in certain
areas. Not only did such alliances give a feeling of a stronger voice,
but they also offered the possibility to share experiences in advocacy,
such as the bad experiences that persons with intellectual and psychosocial
disabilities have had living in institutions.
Working with such coalitions required great sensitivity, however.
Accessible information and information technology is important for
all in many different ways: graphics and pictures or easy-to-read
language are acceptable for certain groups, including some persons
with deafblindness, but they will not work for Braille users, blind
or Deaf-blind. So I needed to support both sides of the issue.
When we started to establish working groups in the IDC on certain
topics, we created separate mailing lists. I volunteered to coordinate
the group on the right to life. My thought at that time was: how
can we talk about human rights of persons with deafblindness, when
they are not even supposed to live?
My way to convey the message was to start many of the speeches at
the AHC with a little poem, showing that I am much more than my deafblindness
and barriers. I develop my quality of life by the little hearing I
have, but most of all by my fingers, being able to read and write,
communicate with other people, being creative in many ways. I had
to show, that each person has her/his way of creating quality of life.
During the process, I began to understand that the CRPD is made for
persons who are living with a disability, persons who have the right
to be a person before the law. The CRPD is a legal document. I am
not a lawyer, so I had to learn this. We had very good lawyers in
the IDC and I began to understand that Article 12 on legal capacity
and supported decision-making was the most crucial article of the
whole CRPD. In this context, we had long discussions about persons
not being able to speak for themselves, not being able to understand
the consequences of legal capacity-even persons in coma. But it increasingly
became clear that legal capacity and legal capacity to act as a person
before the law, no matter the type of disability, is the basis and
turning point of the CRPD. If we did not recognize this, the whole
document would only be a document about non-discrimination and accessibility,
which once again would consign us to be dependent on the goodwill,
the care and the protection of others.
The question, then, was how to make delegates understand the importance
of these principles.
During the seventh AHC session in January 2006, Tina Minkowitz and
Amita Dhanda (the lawyers of the WNUSP) and I formed a working group
to get this message through.
At the beginning, I remember, I started meetings of our little working
group with a long explanation about the issue: We spent the
time talking and writing to delegates about our experiences. We now
need to realize that we have to change our strategy. Education usually
starts where the persons to be educated are and not where we are.
So the way to go about it was to challenge their imagination, as if
it all happens to them.
On the last day of the seventh session we circulated the following
paper to all delegates:
Imagine if someone else were making decisions for you. They could
decide to take you away, lock you up, not listen to you, give you
medication, block you from doing your work and living your life with
your body and mind the way they are.
WOULD YOU WANT THIS TO HAPPEN TO YOU?
Wouldnt you have the feeling that you have lost your
dignity and want it back?
Wouldnt you feel your integrity has been violated?
Wouldnt you want to have support in making decisions
without being taken over and to ask for help without being seen any
the less for it?
Wouldnt you want to maintain your inherent dignity and
be supported to make your own decisions?
Wouldnt you want to retain your integrity and continue
to be you?
Would you want a Convention that allows forced interventions
and does not respect your inherent dignity as a person?
The principles established in this Convention are universal and will
apply to all human beings, as much to you as to me.
Let us make a Convention for a world where we can all grow and develop
with mutual support.
IMAGINE A CONVENTION FOR ALL ....
You can read
the full magazine, including all of the photos in our Digi issue,
by clicking "Like"
from the Loni
Jack Eyers Modeling his Way!
Chinas Ye Tingfang
Drs. Scott and Wiener
Excerpt Human Rights
Anderson Caring for You
Twins Sisters and Lupus
in the Loni Anderson Issue; Senator HarkinThe ADA Generation;
Ashley Fiolek No More Red Eyes; Humor Holiday Cheer;
Paula Pearlman Lets Go Further to Protect People; Geri
Jewell Congress Needs a Reboot; Long Haul Paul Stella!
; Twins Sisters and Lupus; Excerpt Human Rights; Jack
Eyers Modeling his Way!; Chinas Ye Tingfang; Loni
Anderson Caring for You; Rebecca Tripp A Natural Tree
Hugger; Magical Meeting Drs. Scott and Wiener; ABILITY's Crossword
Puzzle; Events and Conferences...