DREAM ITN
Final Deliverable
Anna Arstein-Kerslake
Centre for Disability, Law and Policy, University of Ireland, Galway
Supervisor: Professor Gerard Quinn
DREAM work package: Restoring Voice to People – Reforming Legal Capacity
Law & Introducing supported decision-making
April, 2015
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1.
Introduction to my Topic and Research Questions.
- The Research
The research topic was: the right to equal recognition before the law for people with
disabilities – based on Article 12 of the Convention on the Rights of Persons with
Disabilities (CRPD). The title is “Restoring Voice to People: Reforming Legal
Capacity Law & Introducing a system for supported decision-making” and the
mandate was as follows:
“A core prerequisite of the UN Convention is the reform of European legal
capacity law which needlessly strips decision making away from persons
with disabilities. Article 12 of the CRPD creates an almost irrebuttable
presumption of legal capacity to make decisions for oneself – even for the
most severely disabled. The relevant legal competency remains with the
Member States. As the 2009 Second EU Disability High Level Group
Report on the UN Convention shows, most Member States will struggle to
implement Article 12 with appropriate legislation and policies especially
with respect to regimes of supported-decision making which they will be
obliged to implement. The researcher appointed to this position will
address these issues and provide a roadmap for reform for EU Member
States. This project will include at least one six-month secondment in one
of the following associated partners: Mental Disability Advocacy Center,
European Group of National Human Rights Institutions, INTERIGHTS
and the World Health Organisation. Deliverables which the researcher
will produce by the end of this three year project include Amicus Briefs for
the secondment associated partners, a formal presentation to their Board
of Management and/or members and a major report to be directed at
European Member States by end of year three, setting out a reform model
based on Article 12 CRPD.”
The centre of gravity of the work was exploring the right to legal capacity on an equal
basis for people with cognitive disability. The desk-based research included an
examination of the law for areas in which legal capacity is discriminatorily denied to
people with disability. It also included an examination of how to reform those
2
structures and replace them with support for the exercise of legal capacity.
Specifically, the research explored individual rights and state obligations under
Article 12 of the CRPD. In published work and the doctoral thesis, the researcher
provided definitions of these concepts as well as an exploration of their practical
implications. The researcher also engaged in extensive advocacy and fieldwork in a
number of different counties. She provided academic presentations, lectures, and
consultation for both civil society and state organizations. She also worked
collaboratively with colleagues at her host institution, the Centre for Disability Law
and Policy at the National University of Ireland in Galway, to explore these topics
academically and to engage in social change through policy and law reform as well as
academia and awareness raising.
- The Research Questions
The following research questions were developed by the researcher and were used to
guide her work throughout the three years of the DREAM project:
1. What is the right to equal recognition before the law in Article 12 of the
CRPD?
2. How is the right to equal recognition before the law denied to people with
cognitive disabilities through legal capacity law?
3. How can support to exercise legal capacity facilitate the realization of the right
to equal recognition before the law for people with cognitive disabilities?
The Reform Tasks at the European Level1
The European Union (EU) is in a unique position to realize the right to equal
recognition before the law of people with cognitive disabilities because of the
ratification of the CRPD by both the EU – as a regional body – and by nearly all EU
member states. However, there is a strong argument to be made that no jurisdiction
1
For more information on the EU and reform of legal capacity laws, see Anna ArsteinKerslake, “A Call to Action: The Realisation of Equal Recognition Under the Law for People
with Disabilities in the EU,” European Yearbook of Disability Law, Vol. 5, Waddington, Quinn,
Flynn (eds.) (Intersentia 2014).
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within the EU is fully compliant with Article 12 of the CPRD. The EU has stated,
upon ratification with the CRPD, that the individual rights and state obligations within
Article 12 are primarily outside EU competency. This means that it is largely up to
member states to implement Article 12. However, there are areas in which the EU can
play an important role in the implementation of Article 12.
The CRPD is the first international human rights instrument to provide a mechanism
for ‘regional integration organizations,’ such as the EU, to become parties.2 The
obligations that incur as a result of a regional body acceding to an international
human rights treaty are largely unchartered waters. The CRPD is the first human
rights treaty that the EU has become a party to,3 and, as such, it is not clear exactly
where the obligations of the CRPD lie between the EU and its Member States. Further
complicating matters, not all EU Member States have ratified the CRPD.
Under EU law, the CRPD is considered a ‘mixed agreement’4 because both the EU
and one or more Member States are parties to the treaty.5 The CRPD is ‘mixed’
because the obligations within it have implications for areas where the EU has the
exclusive ability to act (EU exclusive competence), areas where Member States have
the exclusive ability to act (Member State exclusive competence), and areas of shared
ability to act (EU and Member State share competence).6 While mixed agreements are
2
Article 44, CRPD for a discussion, see D. Ferri, ‘The Conclusion of the UN Convention on
the Rights of Persons with Disabilities by the EC/EU: some reflections from a “constitutional”
perspective’, (Centro di documentazione europea - Università di Catania - Online Working
Paper 2010 – Special Series/n. 4, March 2010).
3
Council Decision of 26 November 2009 concerning the conclusion, by the European
Community, of the United Nations Convention on the Rights of Persons with Disabilities
(2010/48/EC), [2010] OJ L 23/35; for a discussion of the legal basis for EU accession to the
CRPD see L. Waddington, ‘Breaking New Ground,’ in O. M. Arnardottir and G. Quinn (eds.),
The UN Convention on the Rights of Persons with Disabilities (Martinus Nijhoff, 2009); and D.
Ferri, ‘The Conclusion of the UN Convention on the Rights of Persons with Disabilities by the
EC/EU: some reflections from a “constitutional” perspective’, (Centro di documentazione
europea - Università di Catania - Online Working Paper 2010 – Special Series/n. 4, March
2010).
4
R. Leal-Arcas, ‘The European Community and Mixed Agreements’, 6 European Foreign
Affairs Review (2001), 483.
5
D. Ferri, ‘The Conclusion of the UN Convention on the Rights of Persons with Disabilities by
the EC/EU: some reflections from a “constitutional” perspective’, (Centro di documentazione
europea - Università di Catania - Online Working Paper 2010 – Special Series/n. 4, March
2010), 10; D. Ferri, 'The Conclusion of the UN Convention on the Rights of Persons with
Disabilities by the EC/EU: A Constitutional Perspective,’ European Yearbook of Disability
Law, Vol. 2 (Intersentia 2010).
6
Consolidated versions of the Treaty on European Union and the Treaty on the Functioning
of the European Union - Consolidated version of the Treaty on European Union -
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not new to the EU,7 the EU has never before navigated the politically charged waters
of a mixed agreement in international human rights law.8 The CRPD in particular
takes pains to assert that it applies in all areas of life, spanning civil, political, social,
economic, and cultural rights. The comprehensive nature of the CRPD ensures that
the web of State Party obligations and EU competencies is destined to be tangled and
difficult to clarify specifically.
The EU’s ability to act is governed by the Treaty on the European Union (TEU) and
Treaty on the Functioning of the European Union (TFEU). The TFEU sets out the
areas in which the EU can act. Among other areas, the EU has competence to
negotiate and ratify international agreements in the areas that are within its
competence.9 When the EU becomes party to an international agreement, the EU
institutions are bound by the agreement.10 Where the EU has exclusive competence, it
is clearly responsible for compliance with the agreement. If an EU Member State has
also ratified, it is legally bound to comply with the agreement and may do so
collectively, individually, or jointly with the EU.11 The mixed nature of the CRPD
creates challenges for its implementation at both the domestic and EU levels. The
complication lies in the reality that the realization of many rights are either tied to
more than one area of competence or shared competencies – often creating the
potential need for reform on multiple fronts and leaving uncertainty regarding
whether responsibility lies with the EU or the Member States or both.
Consolidated version of the Treaty on the Functioning of the European Union - Protocols Annexes - Declarations annexed to the Final Act of the Intergovernmental Conference which
adopted the Treaty of Lisbon - Tables of equivalences, [2008] OJ C 115/1.
7
See: I. Macleod, I. Hendry and S. Hyett, The External Relations of the European
Communities, (Claredon Press, 1996).
8
D. Ferri, ‘Human Rights of Persons with Disabilities in International and EU Law’, in D.
Estrada (ed.), EUI Working Papers, (AEL 2013/10).
9
Article 216-218, TFEU. At the time of CRPD ratification by the EU, the competency of the
EU to enter negotiations and to ratify international agreements was based on Article 13 of the
EC Treaty. Consolidated version of the Treaty Establishing the European Community [2006]
OJ C 321/37 (hereinafter EC Treaty). For a discussion, see: L. Waddington, ‘Breaking New
Ground’, in O. M. Arnardottir and G. Quinn (eds.), The UN Convention on the Rights of
Persons with Disabilities, (Martinus Nijhoff, 2009).
10
Waddington notes that the agreements are only binding within the scope of EU Law. L.
Waddington, ‘Breaking New Ground’, in O. M. Arnardottir and G. Quinn (eds.), The UN
Convention on the Rights of Persons with Disabilities, (Martinus Nijhoff, 2009), 114.
11
See: Case C-316/91 European Parliament v. Council [1994] ECR I 625. For discussion,
see: L. Waddington, ‘Breaking New Ground’, in O. M. Arnardottir and G. Quinn (eds.), The
UN Convention on the Rights of Persons with Disabilities, (Martinus Nijhoff, 2009), 114.
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The right to be equal before the law is specifically enshrined in Article 20 of the
Charter of Fundamental Rights of the European Union (CFREU). Although the
CFREU does not extend the competencies of the EU,12 all EU actions must conform
to the provisions of the Charter. Furthermore, Article 2 of the Treaty on the European
Union (TEU) establishes that the EU is founded on the values of equality, respect for
rights, and the rule of law,13 none of which can be realized without equal recognition
before the law for all individuals – the cornerstone of equality and access to justice.
Unfortunately, the EU has not taken major action to implement Article 12. There is a
Disability High Level Group (DHLG) in the Justice Directorate General of the
European Commission, which is made up of disability experts appointed by Member
States to monitor the current policies and priorities related to people with disabilities.
It is concerning that the DHLG has suggested that the EU does not have competence
in the area of Article 12.14 There are multiple EU treaties (TFEU, CFREU, TEU) that
have provisions relevant to the right to legal capacity and equal recognition before the
law and may provide the EU with competence to act. A comprehensive exploratory
study is needed in this area to determine the most effective type of EU action, but
there are clear links with legal capacity in the following areas of EU limited and
shared competence: non-discrimination, 15 citizenship, 16 employment, 17 and the EU
structural funds.1819
Equal recognition before the law requires non-discrimination in granting legal
personhood and capacity to act. Correspondingly, the EU has a mandate to combat
discrimination based on disability (Article 10 TFEU) and to take action accordingly
12
Article 6 TEU.
Article 2, Consolidated Version of the Treaty on European Union [2010] OJ C 83/01,
(hereinafter TEU); Consolidated Version of the Treaty on the Functioning of the European
Union (hereinafter TFEU), [2010] OJ C 83/01, (hereinafter TFEU).
14
European Commission, Disability High Level Group, ‘2nd Report on Implementation of the
UN CRPD, (2006).
15
Article 13, Treaty of Amsterdam amending the Treaty of European Union, the treaties
Establishing the European Communities and Certain Related Acts [1997] OJ C 340/1.
(hereinafter Treaty of Amsterdam) , (now Article 19 TFEU; Article 21 CFREU) (Article 20
CFREU).
16
Articles 4(2)(j), 20(2)(b) and 22 TFEU; Articles 39-46 CFREU.
17
Article 153 TFEU; Article 15 CFREU.
18
Article 177 TEU (ex Article 161 TEC).
19
There are other additional areas that may provide a basis to act, including the internal
market and protecting the right of people with disabilities to have the capacity to enter into
contract for goods and services.
13
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within the limits of its powers (Article 19 TFEU). 20 Article 20 (CFREU) also
guarantees the right to equality before the law. The EU is required to interpret this
Article in light of the CRPD and incorporate the obligations to provide supported
decision-making and respect the right to legal capacity within the right to equal
recognition before the law.21 Pursuant to the EU’s power to combat discrimination
under Article 19 TFEU, the EU has the competence to adopt anti-discrimination
directives in areas in which it has competence. It is submitted that the EU could adopt
a non-discrimination directive (Article 19 TFEU) to ensure equality before the law in
areas of EU exclusive competence (Article 3 TFEU). The directive could further
enumerate the right to equal recognition before the law in light of Article 12 of the
CRPD. However a general anti-discrimination directive has already been proposed by
the Commission and has failed to be adopted.22 Similarly, there may be a lack of
political will for the adoption of a non-discrimination directive in the area of equal
recognition before the law.
In the area of EU citizenship, the EU also has shared competence with Member
States, as enumerated in Article 4(2)(j) TFEU. The right to vote of EU citizens has
been established by both Article 20 and 22 TFEU and Article 39 and 40 CFREU.
There is evidence that the denial of legal capacity on an unequal basis for people with
disabilities is causing interference with the right of individuals to vote in both
municipal and European elections. For example, in many jurisdictions, an individual
who is denied legal capacity and placed under guardianship automatically loses the
right to vote.23 Articles 39 and 40 CFREU do not provide a basis on which the EU can
act outside its already established competencies, however, the right to vote in Articles
20 and 22 of the TFEU can be acted upon by the EU. The Council may use a special
legislative procedure (Article 22(1) TFEU). There is a clear right to act here, and the
EU has an obligation to do so under its CRPD obligations (Article 4 CRPD).
20
Article 10, Article 19 TFEU.
For a discussion of discrimination in the context of the CRPD and the EU, see L.
Waddington, ‘Breaking New Ground’ in O. M. Arnardottir and G. Quinn (eds.), The UN
Convention on the Rights of Persons with Disabilities, (Martinus Nijhoff, 2009), 122, 130, 135.
22
European Commission, Proposal for a Council Directive on implementing the principle of
equal treatment between persons irrespective of religion or belief, disability, age or sexual
orientation, COM(2008) 426 final.
23
European Union Fundamental Rights Agency, ‘The Right to Political Participation of
Persons with Mental Health Problems and Persons with Intellectual Disability’, (October
2010), 16, available at: <http://fra.europa.eu/sites/default/files/fra_uploads/1216-Report-votedisability_EN.pdf#page=17> (accessed 25 September 2013).
21
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The denial of legal capacity often makes it impossible for people with disabilities to
contract for employment. This results in exclusion from the labour market, which is a
key part of community building and social integration. It also creates serious barriers
to the ability to live independently and earn a livelihood.24 In the area of employment,
the EU may adopt directives and minimum requirements towards gradually
combating exclusion from the labour market (Article 153(2)(b) TEFU).25 Therefore,
the EU has competence to adopt a directive related to ensuring that people with
disabilities are not denied the capacity to contract for employment on an unequal basis
with others. Additionally, a directive could ensure that people with disabilities have
the right to the support they may require in exercising the right to capacity to contract
in employment, for example, by ensuring access to assistance in understanding the
terms of an employment contract. However, because this is an area of shared
competence, the principle of subsidiarity would require that the EU would have to be
able to act more effectively than Member States in this area (Article 5 TFEU).
The EU is also empowered to support and complement the activities of Member
States in integrating people excluded from the labour market and in combating social
exclusion (Article 153(1)(h),(j) TFEU). The EU can take action to support efforts by
Member States to prevent the denial of legal capacity to individuals with disabilities
on an unequal basis, which leads to the inability to enter into a contract for
employment. This can be done in a number of ways, one of which is ensuring that
structural funds are used for programmes that support the goal of realizing the right to
contract for employment for people with disabilities – i.e. not allowing structural
funds to be used for further segregation of people with disabilities into institutional
settings which often require or encourage legal capacity denials and prohibit the
ability to obtain employment.26 Furthermore, the EU could support the Members
States through funding or encouraging research that is needed in this area to discover
24
Articles 19 and 27 CRPD.
In a case regarding equal treatment in employment and occupation, the European Court of
Justice has found that European Union directives must be, as far as possible, interpreted in a
manner consistent with the CRPD. , C-335/11 Jette Ring v. Dansk almennyttigt Boligselskab,
Judgment of 13 April 2013, not yet reported, para. 32.
26
For further discussion, see G. Quinn and S. Doyle, ‘Taking the UN Convention on the
Rights of Persons with Disabilities Seriously: The Past and Future of the EU Structural Funds
as a Tool to Achieve Community Living,’ 9 The Equal Rights Review, (2012), 69.
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at what level the denial of legal capacity is affecting opportunities for employment.
The high rate of institutionalization of people denied legal capacity in Eastern and
Central Europe indicates that the first barrier to employment may be
institutionalization. However, it may also highlight the importance of parallel
processes of deinstitutionalization and ensuring the right to contract for employment –
in order to ensure there is meaningful opportunity to earn a livelihood once an
individual exits an institution.
Although there is much work left to be done, the path to equal recognition before the
law for people with disabilities in the EU is becoming clearer. The researcher
welcomes the opportunity to continue working in this field and strongly encourages
the EU to take advantage of the areas in which it does have competency to make
positive change in this area.
2.
My Research Journey.
This researcher’s work on equal recognition before the law has been a journey of both
professional and personal significance. The right to legal capacity on an equal basis
goes to the core of what it means to be a ‘person’ in our legal system. Essentially,
legal capacity law is regulating ‘personhood.’ Therefore, in researching in this area
and in advocating for an equal right to legal capacity, the researcher was dealing with
the reality that people with disabilities are discriminatorily denied personhood. This is
a highly charged issue. Over the three years of the project, the researcher was
professionally challenged in high-level meetings with government officials and
parliamentarians as well as presenting in rooms filled with hundreds of people. In
addition, her interaction and relationships with people with disabilities who are
subjected to these discriminatory laws proved deeply meaningful and the most
powerful motivation for continuing to work towards equality with and for people with
disabilities. The following is a vignette of the researcher’s experience.
“In 2008, I nervously entered a hotel lobby in mid-town Manhattan. I was
over-dressed in a suit and clutching a notepad with my clammy palms. I was a
second year law student. I knew what I wanted – to be a part of the struggle
for social justice and human rights for and with people with disabilities – but I
didn’t know if I was worthy of joining the movement, if I had enough
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knowledge and experience, if I was brave enough, or if I was following the
right path. I was meeting a disability activist, Tina Minkowitz, who my law
professor, Rhonda Copelon, had introduced me to. I had decided to go to the
City University of New York School of Law because of Rhonda’s
International Women’s Human Right’s Clinic. Rhonda was now dying of
cancer, but still teaching – creating a sense of urgency to my time with her and
my entrance into human rights law.
I saw a short figure coming toward me with a small smile and anxious walk. I
recognized Tina from the pictures and youtube videos I had researched before
the meeting. She is a leader in the international psycho-social disability rights
movement. My broad California smile probably emerged quickly across my
face. I didn’t know what I was looking for specifically from Tina. I wanted to
expose myself to new people, to try to find – by trial and error – where my life
and work should go. We sat down in the busy lobby on a purple sofa in the
corner of the room. Tina is a friendly and fierce woman with a hint of a grey
beard and sliver rimmed spectacles not unlike what I imagined Santa Clause
would don. I don’t remember how the conversation started or ended, but I do
remember my heart rate increasing and goosebumps burgeoning along the skin
of my forearms as we shared our stories and she told me about her work, her
crusade, and her dreams.
Tina is one of the strongest and most authentic people that I have ever
encountered. She is a survivor of forced psychiatric treatment and during our
meeting she shared with me her experiences. It was a window into a
desperately flawed legal structure that discriminatorily denies people with
cognitive disability the legal right to make decisions in their own lives. I felt
like lightening had struck my mind and my heart at the same time. I shared
with her the mantra of my family home: “I MAKE GOOD DECISIONS!” My
sister has Prader-Willi Syndrome, which makes it difficult for her to make
decisions around food. Her unique hormonal mix makes her feel hungry all the
time and she also has low muscle tone and low metabolism that make her only
able to have a very limited number of calories everyday. People with her
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disability have eaten themselves to death from stomach rupture.27 Her biology
is working against her from multiple angles. Every meal, everyday is an
exercise in supporting her without imposing decisions on her. My whole
family now is attuned to this – supporting each other through life and
decisions without paternalistically intervening. Tina was telling me that our
daily struggle was an international struggle, a rights struggle, and a movement
that needed more people who understood its core: people with cognitive
disabilities must have the same right to make decisions and have those
decisions legally recognized as others.
At the time, that international struggle had, very recently, achieved the victory
of the adoption of the United Nations Convention on the Rights of Persons
with Disabilities (CRPD), a binding international human rights treaty.28 The
CRPD includes, for the first time, an enumeration of the right to equal
recognition before the law that requires respect for the right to legal capacity
on an equal basis for people with disabilities. 29 Legal capacity is the
recognition of the individual as a legal person and legal agent.30 This meant
that human rights law finally enshrined a legal right for people with
disabilities to have their decisions respected in law on an equal basis to people
without disabilities.
27
For a discussion of the difficult balance between autonomy and protection in the context of
Prader-Willi syndrome, see Elisabeth M. Dykens, Barbara J. Goff, Robert M. Hodapp, Lisa
Davis, Pablo Devanzo, Fran Moss, Jan Halliday, Bhavik Shah, Mathew State, and Bryan
King, “Eating Themselves to Death: Have "Personal Rights" Gone Too Far in Treating People
With Prader-Willi Syndrome?,” Mental Retardation, Vol. 35, No. 4, pp. 312-314 (August
1997); A. J. Holland and J. Wong, “Genetically determined obesity in Prader-Willi syndrome:
the ethics and legality of treatment.,” Journal of Medical Ethics, Vol. 25, Issue 3, pp. 230-236
(1999); and R. H. van Hooren, G. A. M. Widdershoven, H. W. van den Borne and L. M. G.
Curfs, “Autonomy and intellectual disability: the case of prevention of obesity in Prader–Willi
syndrome,” Journal of Intellectual Disability Research, Volume 46, Issue 7, pp. 560–568
(October 2002). These articles are not discussing Prader-Willi in the context of a universal
right to legal capacity, instead they are generally speaking of when to sacrifice autonomy for
health.
28
United Nations Convention on the Rights of Persons with Disabilities, 2515 U.N.T.S. 3 (13
December 2006).
29
United Nations Convention on the Rights of Persons with Disabilities, Article 12, 2515
U.N.T.S. 3 (13 December 2006).
30
See, Office of the United Nations High Commissioner of Human Rights (OHCHR), ‘Legal
Capacity’, (Background Conference Document for the Sixth Session of the Ad Hoc
Committee on a Comprehensive and Integral International Convention on Protection and
Promotion of the Rights and Dignity of Persons with Disabilities, 1- 12 August 2005).
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By the time I left that hotel lobby, my suit was stained with sweat, both from
nerves and excitement. It was one of only a few encounters I have had in my
life where the connection with another human being is so strong, so visceral.
We shared the same values, the same desire for equality, and the same dislike
for incrementalism. My family’s struggle and my sister’s struggle was
suddenly connected to something bigger than us. I left that lobby with a new
direction to my life, although I was not consciously aware of the change that
had occurred.
Six years later, on April 8, 2014, I sat in my office in Galway, Ireland and
tears rolled down my cheeks as the United Nations Committee on the Rights
of Persons with Disabilities adopted the General Comment on the Right to
Equal Recognition Before the Law and thanked myself and my colleague,
Eilionoir Flynn, for assistance and support in drafting the comment. It
enumerates the right of people with disabilities to have legal recognition of
their decision-making on an equal basis with others and describes the
obligations of States Parties to secure that right. I was unprepared for the
emotions that overcame me. I was hearing and seeing the culmination of six
years of my work. The DREAM project provided me with essential resources
for that work.”
- Methodology
The DREAM work package allowed the researcher to exist in academia as not only a
theorist, but also as a tool for social change. When research began for this thesis, the
incorporation of theory and action was a key goal. The aim was to undertake research
that would utilize theory to provide a deep analysis of legal capacity law, but also to
create work that would be useful for activists, advocates, government actors, and all
agents of social change in the area of legal capacity equality.
The methodology for the research of the PhD thesis that was produced during the
DREAM training program aimed to merge theory and practice to produce a thesis that
is grounded in human rights law, provides theoretical analysis, and a potential
roadmap for achieving equal recognition before the law for people with disabilities. It
began with the study of moral philosophy theories of personhood, then moved to the
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history of legal capacity law and the right to equal recognition before the law. It then
focused on the intersection between these areas, writing on legal capacity as a denial
of legal personhood. This led to the study of Article 12 CRPD itself and an
examination of 12(3) on the state obligation to provide access to support for the
exercise of legal capacity. Theories of personhood in moral philosophy were then
applied to the concept of support in exercising legal capacity. The product of this
research was then used to produce recommendations for the implementation of Article
12.
Moral philosophy was chosen because of its deep examination of personhood and its
relationship to the legal system through theories of justice. This touches the core of
Article 12, which is dealing with the individual’s relationship with the state and
demanding that people with disabilities be recognized by the state as agents and rights
holders on an equal basis with others. Essentially, Article 12 can be interpreted as
sweeping aside much of moral philosophy that examines who is worthy of
‘personhood.’ Instead, it implies that we are all worthy of personhood – meaning that
every individual, regardless of disability, is entitled to legal personhood on the same
basis. This can be interpreted as a direct challenge to theories of personhood in moral
philosophy and the thesis attempts to examine and address that challenge.
The main obstacle that arose during the three years of the DREAM project was one
that arose time and time again and will likely continue to be a barrier. It was
individuals who were highly resistant to the paradigm shift that is required by Article
12 – moving from thinking about people with disabilities as objects to be controlled to
respecting an equal right to autonomy for people with disabilities and respecting
everyone as subjects of their own lives with agency and personhood. This was a
particularly prominent problem within mental health professionals, service providers,
guardianship professionals, and others whose work has depended heavily on the
repressive systems of legal capacity denials to people with disabilities. While this was
a consistent problem, which had to be dealt with very delicately, it was overcome
through listening and showing respect for everyone’s perspectives. By understanding
where these views were coming from – mostly a misunderstanding of the new
paradigm and a fear of insufficient ‘protection’ of people with disabilities – it became
a matter of engaging with these perceived problems and providing solutions.
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Ultimately, many people expressed a change of their own mind-sets and a willingness
to begin thinking in the new paradigm.
The thesis, as well as the other work completed under the work package and over the
three years of the DREAM project, did not assume that human rights law –
specifically the rights and obligations in Article 12 CRPD – will be automatically
taken on-board by ratifying states. It did not assume that the power of human rights
lies in the text of binding human rights instruments themselves. Instead, it viewed
human rights instruments, including the Convention on the Rights of Persons with
Disabilities, as possessing powerful potential for social change if they are utilized by
agents of change strategically and meaningfully. How to use a human rights
instrument strategically and meaningfully depends on the particular social, political
and cultural climate; the agent that is using the instrument; and the actor, institute, or
construct that it is being used to attempt to change. The work produced aimed to be an
assistive device in the use of Article 12 as a tool for social change in the area of legal
decision-making of people with cognitive disability. It aimed to provide an
explanation of the substance of Article 12 as well as proposing use for that substance
that will maximize its effectiveness as a mechanism for a revolution and/or an
evolution in legal capacity law.
3.
My Formation as Policy Entrepreneur.
The work attached to this package – equality before the law – went to the core of the
way society views disability. It demands a stripping away of the impulse to
disproportionately ‘protect’ people with disabilities through paternalistic means, such
as denial of decision-making power. This is a particularly difficult process of change
for many people because they had never considered that it was a problem before,
because any paradigm shift is hard, and because there are a lot of different vested
interests involved.
Understanding the process of change, first involved understanding the barriers to that
change and where they are coming from. Second, it required engaging those barriers
and discovering what is at the heart of the resistance to change. Finally, once the
resistance was understood, solutions were formulated that address the resistance, but
allow for the change to occur.
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More specifically, understanding the process of policy and law change, was also a
valuable experience during the DREAM project. Over the three years, the researcher
engaged in law reform in multiple countries and in many different methods of
involvement. She drafted and helped launch a bill in Ireland on reform of consent to
sex in Ireland – aiming to ensure the right to sexual autonomy of all parties, including
people with disabilities. She also took part in forming a coalition in Ireland to reform
the legislation on legal capacity and to develop essential principles for that reform.
She also provided consultation to a number of different governments and civil society
organizations around the world on these issues (Australia, Iceland, India, the United
Kingdom, New York, etc.) – helping them move their ideas toward Article 12
compliant law and policies.
One of the most important lessons about the process of change that was gained during
the DREAM project was the importance of building bridges and not burning bridges.
It became clear that much more can be accomplished when the maximum people are
on-side and feel as if they are working together towards something new and exciting.
This is the key role for researches in the process of change. Academics hold a
uniquely ‘neutral’ position between states, civil society, and other actors. Researchers
can use this neutral position to bring the different sides together and build bridges
towards positive social change.
These lessons were learned over a variety of different projects that the researcher took
on. The secondments in the Mental Disability Advocacy Center and Interights also
helped develop these lessons. Another important lesson gained from the secondment
experiences was the importance of strong and patient leadership as well as leadership
that is understanding and accommodating. In being exposed to many different
managerial types in these organizations, the research gained experience in effective
management styles and techniques.
4.
Tentative Outcomes and Recommendations.
The EU’s conclusion of the CRPD makes it is legally bound to take all action within
its competence to protect, promote and ensure the rights within it. Legal capacity is
certainly not an exclusive competence of the EU, although as described above, there
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are several legal routes that the EU can use to take action to secure the right to legal
capacity and fulfil the obligations of Article 12. The Member States must play a major
role in implementing Article 12 on the domestic level – and the States that have
ratified the CRPD are also legally bound to do so. Discrimination, citizenship and
employment are all areas of shared competence, and the Member States may act in
these areas to the extent that the EU has not. Unfortunately, the EU has not taken any
action to secure the rights in Article 12. Therefore, Member States are obliged to take
action now to make their laws compliant – which would also provide an easier
transition when the EU does take action in this area.
In the development of supported decision-making regimes, primary competency
appears to lie with the Member States because there is no clear area of EU
competence that this would directly fall under. However, the EU remains free to
support, coordinate, and supplement the Member States actions in this area – as is
clear in the EU Disability Strategy for 2010-2020, which notes that EU action will
promote the conformity of Member State legislation on legal capacity, but makes no
other mention of EU action to be taken in the area.31
Recommendations to the EU
•
Interpret the right to equal recognition before the law found in Article 20
CFREU consistently with the rights and duties within Article 12 CRPD –
including the right to legal capacity on an equal basis with others as well as
the right to support for exercising legal capacity.
•
Recognize the right to equal recognition before the law and its subsidiary
rights (legal capacity on an equal basis with others and support to exercise
legal capacity) as civil and political rights subject to immediate realization and
requiring that the EU take the steps necessary to implement the rights.
31
Communication from the Commission to the European Parliament, the Council, the
European Economic and Social Committee and the Committee of the Regions, European
Disability Strategy 2010-2020: A Renewed Commitment to a Barrier-Free Europe,
COM(2010) 636 final, 7.
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•
Instigate research into the most effective method for utilizing the
competencies of the EU to ensure equal recognition under the law for all
persons.
•
Support and complement the activities of the Member States in the
implementation of Article 12 – including assuring that EU funding is not used
to support programmes or structures that foster violations of Article 12 (i.e.
the building or maintenance of institutional residential settings for people with
disabilities).
Reflection of the Researcher
The DREAM project provided the researcher with the resources and freedom to
engage in social change in the area of legal capacity law on a variety of different
levels. She interacted with Disabled People’s Organizations, civil society groups,
governments, parliamentarians, academics, and others. She also gained experience in
legislative drafting, legislative advocacy, strategic litigation, coalition building,
academic writing, accessible writing, lecturing, meaningfully engaging a wide variety
of stakeholders, and other areas. All of this was made possible by the DREAM
project. The experience and knowledge gained over the three years of project is and
will continue to be invaluable. She would like to thank the EU and all the actors that
made the DREAM project possible.
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