International Human Rights Funders Group
25 January 2010.
“The United Nations Convention on the
Rights of Persons with Disabilities – what
role for Philanthropy?”
Director, Centre for Disability Law & Policy
National University of Ireland, Galway.
1. Personal & Professional Reflections.
2. The Innovative Features of the UN CRPD.
- Foundational Premise: People are Not ‘Problems’.
- Innovative Thinking on Equality.
- A Lifecycle Approach.
- The Primacy of the Person – Restoring Personhood.
- Woodstock Revisited – Live the Way you Want to!
- Rejecting Impunity for Violence, Exploitation and Abuse.
- Ensuring that Economic, Social and Cultural Rights are Part of
the Solution – not Part of the Problem.
- Transforming the Political Process to Sustain Change.
- Ensuring that Change Happens – Imagining a New set of
3. The Future – Your role.
Thank you very much for the high honour and privilige of addressing you today.
And I would like to thank the organizers of this session –OSI – for making this
possible, especially Emily Martinez, Alison Hillman and Sarah Flood. Let me pay
tribute in passing to the sterling work also being done in the disability field by the
Disability Rights Fund and Wellspring.
I want to use the time available to do three things:
First, I want to tell you about my journey. I do so not because it is particularly
special – but simply because it reveals how someone who had absolutely nothing to
do with disability and who led a ‘normal’ personal and professional life got involved.
Secondly, I want to talk to you as a professional about some of the interesting
innovations in the new UN Convention on the Rights of Persons with Disabilties
(CRPD) – innovations that ripple far beyond the disability field.
Lastly, I want to talk about my sense of the future, where the multiplier effects can
be found and how the disability innovations point the way for many of us despite
our disparete interests.
1. Personal and Professional Reflections.
First – why me?
Well, I was a delirously happy postgrad student here in the US in the mid-1980s. I
was immersed in legal history, legal theory and international human rights law.
Like most students of my generation I was motivated by what was happening at
home – in Northern Ireland – and moved by the civil rights model I learned about in
the US. I bathed in a heaven of legal concepts. As your Felix Cohen once wrote, this
heaven was open to all properly qualified jurists who drank the Lethan draught that
induced forgetfullness of all other terrestial human affairs.
This delightful but detached state of mind was shattered for me by three things that
occurred in the late 1980s and early 1990s. First of all, our eldest daughter was
born. She was born with a disability – which was a great shock to us and especially
in a country that had a long (and to me an ignominious) tradition of charity that
allowed the poor law to continue into the 20th century. After shock comes a desire
to do all one can to ensure a fulfilling life for one’s child – but of course no matter
how much one tried, obstacles remained in the way.
The second thing that happened was President George Bush Snr signed the
Americans with Disabilities Act into law in 1990 – just a few moths after my
daughter’s birth. What a remarkable piece of civil rights law! It prohibits
discriminaion in employment and in the enjoyment of public and private services. I
remember saying to myself – ‘hey, we can do that here’ – meaning in Europe. Now I
know the ADA is not perfect and I know your Supreme Court is not exactly
enthusiastic about it. But, just like the shots that rang out in Lexington and Concord,
this single piece of legislation electrified the world. So much so that there are now
over 40 copycat pieces of legislation around the world – not least in the EU. Why? It
has relatively nothing to do with the content of the legislation – most of which is
indeciperable to non-US lawyers. Its power has to do with its foundational premise.
What is that premise?
Well to properly appreciate that premise I must tell you about the third thing that
happened around then. It was of course the fall of the Berlin Wall in 1989. The
important message this reinforced in me is that arbitrary barriers – no matter how
impregnable they appear – do not stand forever. Now it seems to me that there is a
Berlin Wall in the disability sphere. I began thinking ‘why is it that we have a blind-
spot when it comes to disability? Why isn’t our first natural reflex to relate how
people with disabilities are treated to justice, to civil rights? Why does our mind
play tricks, errect barriers and deflect disability into social programmes that only
work to isolate and not to integrate? Most cultures respond to disability with a mix
of pity –which leads to charity – and revulsion which makes warehousing,
segregation and exclusion somehow seem ‘natural’. Prof Theresia Degener
famously calls this ‘the problematization of the person’ – rather that locating the
problems in the ways society reacts to the person. Why this Berlin Wall in the
mind? There is nothing natural or inevitable to it.
I found a way out of my own bafflement by connecting what I had learned in legal
history to disability. When you think the Berlin Wall in the disability field there is
actually nothing surprising here and plenty of precedent. Take gender. Sir William
Blackstone – that great English legal historian of the 17th century whom everyone
quotes but nobody reads – once wrote that upon marriage ‘women suffers civil
death’ meaning that her personhood was merged with that of her husband and she
as treated as a chattel. Of course, the history of law reform since has been one
restoring personhood to women – which has still not happened in some parts of the
world. Take race. And reflect for a moment on your own Reconstruction period
here in the US. You professed freedom and equality in the 13th and 14th
Amendments – yet almost immediately after the last shots of the Civil War you
began enacting the Black Codes to segregate – as if people of colour had diminshed
personhood. Indeed, one judge in Plessey v Fergusan even said ‘hey if you feel
inferior thats your fault’ – again problematizing the person. The point is that no
sense of contradiction was felt in professing one set of vaues and treating people in
exactly the opposite manner. Separate but equal was the mantra in gender, race as
well as disability. Well, Berlin walls remain for a while and the arbitrary
distinctions they make often go unchallenged and even internalised as ‘normal’– but
So the jump spark connection for me was a relisation that charity and revulsion had
to go. Just like women and race, our challenge was to find a way of uncloaking the
person behind the disability. As the chair of the drafting process in the UN put it,
‘our aim is to treat persons with disabilities as subects bearing equal rights with
others – and not as objects as before to be somehow managed or taken care of.’
Now some will respond – but women and racial minorities are not different – the
difference had been imposed through stereotypes. Persons with disabilites are
different because they have a disability. In other words, you may follow the logic of
equal rights – but with some ‘mental reservations’ based on an instinct that persons
with disabilites are indeed different and the difference in treatment can be
rationalised – if not justified by this difference. Don’t underestimate the power
of this instinct that seems embedded in nearly every culture in the world. After all,
even the word ‘disabled’ seems to dull our critical faculties. The word itself invites
us to think of disabled people as not being able to do things. But remember Lincoln
and Churchill. They had their fight with ‘the black dog’ of depression – but no one
would say they weren’t world historical leaders!
Even more insidiously, the word makes us comfortable with the notion that there
are gradations of persons – that some matter less than others. Put that dragon out
into the open to slay it. Think where it leads! Your rights, your status, your claim on
the political community depends on your use value. The last time I came across that
was in my classes on Feudalism. No, if use value were the touchstone of rights and
personhood then we would not have ‘one person one vote’. It seems to me that we
all have to guard against lazy mental habits that accept the segregation and
exclusion of persons with disabilities as somehow, ‘natural’, for their own good and
in some way ‘their own fault’.
If you want to be highflutin about it you might say, as Hegel would, that the fall of
the Berlin Walls in gender, race and now disability marks the spirit of liberty
working itself pure from generation to generation and washing away superstition
OK - you might well say – there may well be a kernal of truth to say the difference of
disability is real. You either have an impairment or you don’t. But the temptation is
to rest here. Think it through. Its how we respond to this difference that counts. Do
we respond by being faithful to our prime directive which is to uncloak personhood
behind the form of disability – to make space for a Lincoln or a Churchill. If so then
our first impulse should always be to create space for the person despite the
disability – to accommodate the person to enable him/her to enjoy the blessings of
liberty for all and to contribute.
Take the US. E Pluribus Unim does not do away with pluribus. Your inventive and
creative democracy grasped this positive turn toward accommodating difference in
the Americans with Disabilities Act in 1990. You achieve this through the innovate
idea of ‘reasonable accommodation.’ The simple idea was that equality in this
instance is best achieved not merely by prohibiting negative action but requiring
some modicium of positive action. Interestingly, it was an idea that came from the
field of religion. This is a country of diversity – I know – and I’m proud of my
cousins in Chicago (especally Marge Carlson who campaigned for FDR in the
Here I have to say – thank you America. This notion of ‘reasonable accommodation’
in your law is now a core feature of the UN disabilty convention. Now that’s what I
call ‘soft power’ with a vengence.
Well, just to finish my story. Armed with these convictions, I went on to sit on a
Government enquiry in Ireland into civil rights and disability which led to a
blueprint for reform – and my daughter has been one of the beneficiaries. I served
with the European Commission in the mid-1990s moving EU policy towards equal
opportunities. I sat on a treaty monitoring body in the Council of Europe on social
rights and nudged the caselaw favourably on the grounds of both ageing and
disability – which I see as intimately connected. And I helped craft arguments for a
disability-specific treaty in the UN in a 2002 Study of the UN Office of the High
Commissioner. I participated at most of the negotiations. And I always had one
thought in mind – how can we break down arbitrary barriers to make sure that my
daughter’s life would be fulfilling regardless of where she settles in the world?
2. The Innovative Features of the UN CRPD.
Well here we are with the latest UN thematic convention on human rights!
The Convention is a remarkable document that should be studied not just because of
disability but also in how to connects to so many other groups facing Berlin Walls
and so many long-standing issues like education and employment.
Let me give you my take on some of the key innovations as someone in the field but
also as someone interesed in legal history and legal theory.
- Foundational Pemise: People are Not ‘Problems’.
The Convention is anchored on the view that the person with the disability is not the
problem. Remember what Theresia Degener says – traditional disability law and
policy ‘problematizes the person’. Well, the problem resides in how third parties
(including the State) reacts to disability. This is reflected in the definition of
disability (if one can call it that) in Article 1 of the Convention. The main point of the
‘definition’ in Article 1 is that disability does not exist in the abstract. It is a function
of how impairment is compounded by arbitrary barriers placed in front of people.
- Innovative Thinking on Equality.
Now, if the focus of the Convention is not so much on disability but on how 3rd
parties (including the State) react to disability, then the non-discrimination tool
becomes centre stage. The leitmotiv of the Convention is equality and non-
discrimination. The drafters did not seek new disability-specific rights. Rather, they
sought ways of tailoring these rights in the disability context to make them real. The
concept of ‘reasonable accommodation’, which is one of the major achievements in
your law, has been engrafted wholesale into the UN Convention – and made
applicable across a broad range of fields.
Bear in mind the Convention prohibits discrimination ‘on the basis’ of disability’
(Article 5). So to me its protective sweep is actually broader than persons with
disabilities themselves and can include families and carers. The European Court of
Justice has already agreed. By the way, Flanders (the region, not the cartoon
character) now requires ‘reasonable accommodation’ on all grounds of
discrimination including gender, age, race.
- A Lifecycle Approach.
The Convention contains two overarching Articles – one on women and the other on
children. The drafters showed an understanding that disability is not pre- or
separately packaged. It intersects across the lifecycle. Specific mention is made to
ageing in its preambular paragraphs. The clear message is that disability is a natural
feature of the lifecycle and indeed something most of us will acquire at some points
in our lives.
- The Primacy of the Person – Restoring Personhood.
Our (Western) legal order prides itself on the primacy of the person. You are the
measure of yourself. You sculpt your own life choices in accordance with your
preferences. But if disability is something to be managed then self-determination
becomes relegated in status. Worst case scanario – you lose your personhood in
law. You would probably be amazed to learn just how easy it is to strip you – yes, I
mean you – of legal capacity to act as a person – as a ‘subject’ of the law rather than
as an ‘object’. I have zero capacity when it comes to financial matters (absolutely
true). Yet for that reason I could be stripped of all capacity to make decisions on all
matters affecting me. That is why Article 12 - which deals with restoring legal
capacity to person with disabilites - is so crucial in the disability context.
The legal capacity field is arcane and technical. But the underlying message could
not be clearer – personhood cannot be robbed and must be restored. If people have
decion-making deficits (like me) then they should be assisted and not robbed of a
core element of personhood. To me this is a pure ‘rule of law’ issue and should
resonate with those of you interested in the integrity of legal systems. It connects
directly with arbitrariness in law and to an extent with arbitrary detention.
- Woodstock Revisited – Live the Way you Want to.
Take the analogy further. Most people here never think about living their own lives
they way you want to. But what if you are told where to live and with whom and on
what basis? Most of you would say ‘that sounds like East Germany – I don’t want to
live there’. Article 19 of the Convention innovates by spinning our understaing of
liberty to include a right to live independently for persons with disabilities in
accordance with our own choices and preferences. Again, the main point is that we
take this for granted for ‘us’- and because of the Berlin Walls in our minds we never
thought through what was necessary to make this a reality for persons with
disabilities. Article 19 supplies for this deficiency.
By the way, one of the architects of Article 19 is your own Lex Friedan, who chaired
the US National Council on Disability as well as Rehabilitation International - a
Texan in the mould of Jefferson.
To me this is a classic liberty issue with the added twist that it explores how liberty
can be made a reality for people who are in danger of death by paternalism. It
should resonate with your interest in liberty. Flip it over. To me, carers have a right
to live independently too! I am passionate about this because it seems to me that
deficiencies in State provision inevitably impact disproportionately on families and
carers. Is there a gender dimension to this? You betchya! There was a lot of talk
some years ago about the feminization of poverty. Permit me to say that the
opportunity costs of carers of persons with disabilities is enormous and is equally –
and to my mind egregiously – burdensome on women.
- No ‘no-go’ areas Remain.
Furthermore, persons with disabilities have certain vulneabilities. Contrary to
popular misconception these vulnerabilites generally arise through no fault of the
person. Institutionalisation creates ripe conditions for violence, exploitation and
abuse. Moreover, it can do so through inadequate regulation, a culture of impunity
and a conspiracy of silence particularly if the cure would involve more or better
Don’t get me wrong. The priority here should not be to ‘improve’ institutions but to
close them down. Properly read, the Convention to me demands appropriate de-
institutuonalisation. But it also specifically rejects impunity. Again, to me this is a
classic ‘rule of law’ issue that should resonate with those of you interested in what
goes on behind closed doors and how congregated settings can be moved to
community settings with personal choice and preference at its heart.
- Ensuring that Economic, Social and Cultural Rights are Part of the Solution –
not Part of the Problem.
Now, liberty and choice has its own political economy. This is true for all of us. We
would not be here today unless our States invested in education. I certainly
wouldn’t. But this investment was rationed in the past. Students with disabilities,
like students of colour, generally received segregated education (if any).
This gets us in to the broader field of economic, social and cultural rights. It is fairly
plain that many (though by no means all) persons with disabilities need the material
support of the State to take advantage of their notional freedoms. However, the
‘problem’ in the past is that the ‘social welfare’ response entrapped persons with
disabilites. There was almost a subtle misunderstanding that was widely accepted –
which is that disability is solely a social policy issue. Swept under the carpet was a
lack of investment in human capital as well as a form of investment that made
exclusion in later life almost inevitable. You can see the logic of Brown v Board of
Education intruding here.
Now, I’m no fan of a static conception of economic, social and cultural rights that
simply ‘maintains’ people. They are only worthwhile and useful if they in fact prime
people to be the very best they can be and to assume charge over their own lives.
The ‘beauty’ of the Convention to me is that practically all the rights contained in it –
even classic civil and political rights – are configured to have some analogue with
respect to economic and social supports and rights. For example, freedom of
expression is pegged to a right to access accessible material.
To me the Convention does a great job in trying to ensure that economic, social and
cultural rights are not part of the problem – as was assuredly the case in the past –
but part of the solution. True, we have all the usual stuff in the Convention about
these obligations being obligations to be ‘progressively achieved’. OK, there is no
breakthrough there – and none was expected.
But to me the real breakthrough is how these social rights have been refreshed by
resting them on the key insight of civil rights – empowering people and trying to
ensure they get a head start and steady support throughout life.
Let me make it plainer. The rhetoric we all read, and regurgitate as occasion
requires, is the much vaunted thesis on the interdependency and indivisibility of
both sets of rights. Well it is largely rhetoric. It convinces the convinced and leaves
unmoved the unconvinced. The beauty of disability to me is that it proves the thesis.
What does it benefit the poor of Paris if they have an equal right to sleep under
bridges? What benefit is it to the disabled if they have an equal right to employment
if they can’t get the accommodations necessary to enable them graduate with a high
- Transforming the Political Process to Sustain Change.
Allow me to identify two other key innovations. One reason the Convention turned
out so well had to do with the large presence of civil society at the drafting table. It
may seem strange to hear me say this as a lawyer but I think it would be a mistake
to think of the Convention simply as the source of norms and arguments to be used
to attack bad laws and policies. No, the whole point is to change the process that
brings about these bad laws and policies in the first place. That is why the novel
obligation contained in the Convention (Article 4) to require States to consult
actively with civil society is so critically important. It means that this ‘discrete and
insular minority’ now have a legal right to be at the table. Thus ramifies outwards to
more substantive rights to participation contained in the Convention – and
especially political particpation. You would be amazed at the number of countries
that deny the right to vote based on one’s status as disabled. To me this resonates
with some of your concerns about political rights and the integrity of the political
process. Any process that explicitly or implicity excludes cannot be called
- Ensuring that Change Happens – Imagining a New set of Institutional
Last but not least - I am sure Charlotte and Gabor can provide more – let me say a
word about implementation and monitoring. We all know that the existing UN
monitoring system is not perfect to say the least. We all know the structural reaon
for this. International law tends to be hermetically sealed from domestic law and
national processes of change. There is no effective transmission belt between
international norm ‘out there’ in the ether and domestic change. Well the drafters of
the CRPD also knew this and wanted to innovate. I have written about the
‘temptation of elegance’ – the view that just because a treaty is there that change
will happen. Well, Article 33 innovates by now requiring an institutional
architecture for change to exist at the domestic level. It should comprise a key ‘focal
point’ within Government – and a ‘coordination mechanism’ to ensure that people
don’t fall through the almost inevitable cracks that bureaucracy leads to. And these
Governmental bodies must act in close consultation with civil socioety. Again, voice
is restored to this ‘discrete and insular’ minorty. And as a check, Goverments are
now obliged to establish an independent mechanism to monitor progress. To you or
I, this is a civil rights or human rights commission. This is very innovative.
3. The Future – your role.
What of the future? How does this all this intersect with your ongoing work?
Well, first of all, I would insist that although this Convention is grounded on
disability it is not actually primarily about disability. It is really about a concept of
justice. It is about making that concept of justice apply with equal force in the
context of disability. This means we all have a stake in its suceess – and not just
disability groups. It is not owned by anybody – it is owned by all.
From a very practical point of view, the jurisprudence of the new UN Committee on
the Rights of Persons with Disabilities will not flourish unless it can connect with
and refresh more mainstream understandings of human rights. In fact, this was one
of our most basic argments for a disability convention – not as an end in itself but as
a means of inserting disability into broader agendas. So just because this is a
convention on disability doesn’t mean that you don’t have a stake. I would say quite
Secondly, it will not succeed if it creates a new Berlin Wall – or reinforces Berlin
Walls already out there. What I mean by this is that it will not succeed if it leads to a
ghetto of disability-specific insights, jurisprudence, caselaw and policy solutions. It
will only become a success when it stimulates mainstream actors to factor it in to
their worldview and activities.
I myself am a prime example of this. I have been active for over 20 years in the field
and I direct a new Centre on Disability Law & Policy with generous support from
Atlantic Philanthropies. However, I am joining others in my university in forming a
Lifecycle Policy Institute. My partners are two other Atlantic supported Centres on
my campus in the field of ageing (Centre for Social Gerontology) and child and
family support (Centre for Child & Family Research). Neither of us lose our core
identities – but all of us move consciously together to see where the overlaps lie and
to minimise discontinuities in policy if we were to continue in complete isolation. I
believe this is as it should be
This means a lot to you. You all function in disparete fields – gender, race,
education, due process, arbitrary detention, rule of law, social justice – and you are
all bound together by a shared overarching commitment to justice expressed as
rights. Personally, I don’t want to see you transformed overnight into disability
philanthropies. I much prefer to see you interrogate yourselves as to whether your
sense of justice is capable of being expanded – just nudged slightly – to encompass
disability. Let me give a few examples.
Are you interested in gender and violence? If so, are you aware that a
2004 survey in one province of India found that 25% of women with
intellectual disabilities had been raped and 6% of disabled women had been
Are you interested in children? Do you know that violence against children
with disabilities is estimated to occur at least 1.7 times more frequently than
for their non-disabled peers?
Are you interested in education? Do you know that 90% of childen with
disabilities do not attend school in developing countries? 40 million of the
115 million children out of school in the world have disabilities. It’s hard to
imagine universal primary care being acheved without including children
Are you interested in literacy? Do you know that the literacy rate for
persons with disabilties around the world is less than 5%? Now ask
yourelves, how can people meaningfully interact with the normal democratc
process to effectuate change for themselves if they lack even these basic
Allow me to report that the European consortium of foundations on human rights
and disability comprises many different foundations who have not traditionally
come from the disability field. I pause for a moment to praise the two co-chairs of
that consortium – Miguel Angel Cabra de Luna and Hywel Ceri Jones – for their
commitment. Miguel comes from a disability foundation and Hywell comes from a
long history of public service in the European Commision and elsewhere and brings
a wealth of experience in how to get things done across a broad range of social
policy challenges. Atlantic Philanthropies is already a key player within the
consortium. The consortium shows every sign of rippling outwards to more and
more mainstream and grant-making European foundations.
I encourage you to learn from their example – especially the exmple of reaching
beyond disability-specific foundations to embrace foundations with a broader remit.
All the more so as I think it is possible - if not likely - that the existing Transatlantic
Agenda which allows the US and the EU to dialogue on shared policy challenges will
be broadened and deepened on the disability issue soon.
My message is simple. Think through whether and how your field overlaps with the
Convention. Interrogate yourself on the Berlin Walls that may unwittingly persist in
your field – in your own minds. Try to nudge your field towards a more conscious
effort to reflect on how your activities can contribute. Be open to the view that
could well be a disability perspective to your work. Take to heart the insight that
people do not come pre-packaged as young, old, disabled or coloured. Even if
Jefferson the man could not face his own contradications on race, never lose sight of
the Jeffersonian ideal of a Civic Republic where all have their place regardless of