Disability Matters

The Right to Have Rights. We Are Human Too

The word ‘too’ in my title is meant to suggest not just inclusion but plurality.

According to the German-Jewish philosopher, Hannah Arendt, human rights are ‘the rights
of members’: those who are already considered as members of a political community.
That community is diverse. Not in any way homogenous and its action is a continuing
process. This should mean that disabled people as persons who are different, should be
implicitly part of this community that allows for difference.

The preamble to THE UNCRPD ratified by Trinidad and Tobago in 2015, lists in detail the
rights of a person with a disability as members of a society who belong to a particular
community or group.

It does so by recalling the principles
(a) proclaimed in the Charter of the United Nations which recognize the inherent dignity
and worth and the equal and inalienable rights of all members of the human family
as the foundation of freedom, justice and peace in the world.
.As family members, we are all therefore deserving of equal dignity and worth. According to
Hannah Arendt, the idea of the human is, however, different from the idea of citizenship.
For having rights indicates that one is bound by and is part of a tangible social and political
structure. However, if one is excluded from that structure, then one needs to ask is it
possible to have rights?

We have to ask how may persons with disabilities claim rights, if historically they have been
excluded from that human family through processes of segregation, exploitation, or even as in
present times extermination, because of an impairment. We have created exclusions by
distinguishing those who have rights and those who do not. And have done so in the name of the
common good. Until the 20th century, for example, persons with disabilities were objects for
experimentation and underwent torture in the name of the common good. Much of what
we know of the human body, in fact, derives from experiments on disabled bodies. We have since
moved on.

In order to ensure that all persons have rights, they must be seen to be part of society. The
whole idea of a human rights convention is that we are seeking to address the fact that
persons have been excluded from society. It is on the basis of their exclusion that we write
Conventions such as the UNCRPD. However, the idea of inclusive rights hinges on the fact
that persons with disabilities are accepted as part of a human family. To take away the
rights of an individual, one must, in a fundamental way, first perceive and represent them as
different from the rest of humanity and, moreover, less than the human. To redress that evil
one must declare the fact of their humanity. Which leads to the question, what does it
mean to be a human person? Am I human because I am born human, or is there a more
abstract idea of the human, since historically mankind has been able to exclude and destroy
large groups of that so called human race?

A declaration of human rights is not sufficient. Action that works towards the inclusion and
acceptance of groups into a social structure that offers protection and an assurance of
rights is a necessity.

One has to ask these questions because It is still possible to incarcerate a disabled person
without reference to their full human rights as a person born into the human race. There is
still a ward in St Ann’s in Trinidad, which houses individuals whose only reason for being there is that
they were institutionalised because they were “DEFECTIVE”. Or in the language of our laws
“imbeciles” or “idiots,” or “feeble minded persons”; terms that remain as part of our legal
institutions in the Caribbean. Perhaps we do not, in today’s world, use phrases such as “the almosts” as
happened in the 18th c, meaning the almost human, (Seamus Deane, “The Right to Have Rights”, Lecture, 2018, YouTube) but we all live in societies where at some time such ideas of being “almost” were part of our thinking and our language.

What then, does it mean to be fully human? The truth is that we create an idea of what it is
to be human by virtue of how we have been conditioned to see and understand the world in
which we live and we do this through the lens of the political and the social.

In order to transform society, and its structures, we must first teach and demonstrate to
society that lacking intellectual capacity or conceptual skills, or having a physical
impairment or a developmental disability or a psychiatric problem does not mean that the
individual is less of a person. And one needs to convince others of this even when they say
that they do not need convincing.

Inclusion hinges on the understanding and acceptance of our equal humanity.

describes disability as an “evolving concept”. An interesting turn of phrase. But one that
points to the fact that our understanding of disability has changed and will continue to
change. When I arrived in Trinidad after being away for twenty five years, I could not believe
that there were no persons with Down syndrome on this island. They were invisible, except
for one young man who slept for a while beside the Santa Rosa church. Not long before this,
they could have been dumped on the steps of the Lady Hochoy Home, or cast away or left
to roam the streets unclaimed and unwanted. The gates of the Lady Hochoy Home were
kept locked not to keep people in, but because parents would arrive at dead of night and
abandon their children on the steps, as Sr Bertil Dean has documented. Our young people
are no longer invisible. Now, we see people with Down Syndrome everywhere. There has been a virtual
explosion. The explosion has been in people’s minds. They now know that a person with DS
can walk down the road, can go into shops, can live at home, can be beautiful and
talented, can be independent, can speak for themselves.

Yes. Disability is an Evolving Concept.

And it will keep on evolving as we begin to understand what the word “human” actually
means. Does it, as the Enlightenment suggested, signify a gift of reason? But, women were
subjected to discrimination based on the fact that they were seen to be ‘irrational.” Blacks
too. And that process of distinguishing those with intellectual or rational capacity and
therefore those with greater rights became part of the process of separating those who had
rights and those who did not. Much of that separation occurred through the route of
vehicles of representation, whether this be the word or the image.

The enslaved were not considered fully human and the reasons put forward ranged from a
lack of soul to a lack of intellectual capacity and even the size of the brain. But, ultimately,
the reasons were based on use value or lack thereof. Women were spoken of as “beasts of
burden”. Persons with intellectual disabilities and people with physical impairments were
given names such as ‘hop along” or “Popo” or BeBe. In fact my earliest and most profound
recollection of encountering a person with DS in my childhood was Popo. His name created
an image and an enduring idea of what society conceived that he was. His entire physical
presence was that of an unteachable baby who could never grow up and who wandered the
streets of Arima.

When we speak of people with disabilities or impairments, we are talking about groups of
people who, over time, have come to be associated with certain stigmas by the very fact of
how they look and how they are perceived. Hence the reason that some years ago there
was a fashion that led to plastic surgery for persons with Down syndrome. Persons with
disabilities have been spoken about historically in the language of racism, as being over
sexed, incapable of real work, incapable of being educated, violent, uncontrollable. They were seen to be
incapable of living in the same space as ordinary citizens, so needing to be segregated. And
these ideas which lead to their dehumanisation are filtered through language of care and
concern, charity and goodwill.

If we look at the language and arguments exemplified in an act such as the Immigration Act, Trinidad and Tobago, we recognise the residue of these images. A person with a disability is a burden or a
potential burden on society. He or she cannot achieve the full status of a human person.
Cannot –ever grow up. Therefore in the best interests of the society a person who can
never be fully formed cannot have legal rights. The language of the Immigration Act codifies
this (imbeciles -mad people -idiots) AND AS SUCH can be excluded from entering our
nation.. According to Hannah Arendt “the hypocrisy of the human is often disguised as law” (Hannah Arendt and Human Rights). We protect the human by disfranchising the disabled. Periodically, we have had great minds call for the extermination of defectives in the name of the greater good or the call for
certain populations to be reduced, forcibly or otherwise.

But just in case you are thinking that we no longer use derogatory language as the norm to
describe persons with disabilities let me take a side step. Justification of inequality is not
necessarily couched in the language of abuse. Most often it is sweet and palatable. We read
articles—–which literally drip sympathy and pity for the poor parents and the young
individual who is trying his best. In order to justify keeping persons with intellectual
disabilities in abeyance and persons whose existence disturbs our ideas of what it means to
be fully human, we separate them via the mechanism of charity. We have to look after
them. They are a danger to themselves and to us. Thus we continue in our media and in our
lives to use a language of sympathy and charity that locks persons with disabilities further
into the prison of their “almost” status. But persons with disabilities do not want to be
pitied or to accept handouts. He or she wants to be seen as having the right to be educated
to the best of his or her ability, and to have a job and to have a life. Hence this year’s UN
mantra: Nothing For Us, Without Us.

I want to do a little pivot. And say almost in contradictory fashion that Trinidad and Tobago
demonstrates some of the most caring and solicitous attitudes to persons with disabilities
that I have encountered. And what is more, the leaps in consciousness that I have seen since the inception of NODES in 2014 have been almost unbelievable. But, the framework of our
society, its structures, still prevent change in the fullest sense of the word. The idea of care does not yet extend to full equality. It is as if we are on the cusp; held in thrall by a system that we have lived in for so long that we cannot conceive of systemic change.

Yet. We are here in an academic setting in a university and listening to people from different
areas of society talk about the seriousness with which they are thinking through science and
its relationship to disability. Later today, we will be looking at a mandate to change
legislation, in particular that Immigration Act that I mentioned earlier. These are huge steps
for our society. They have occurred because we have come to realise in a very short span of
time the need to change language and to create structures that project an idea of all

The step that we must take now is a difficult one because it involves a reshuffling of virtually
the very basis of our education system.

We, as Trinidadians and Tobagonians, have a particular veneration of education. There is an
historical reason for this, since education was key to advancement and, of course, a
fundamental pillar of independence thought and action. Education and learning and what
we conceive of as intelligence became the signifiers of advancement. This has made our
attitude to people with intellectual and developmental difficulties quite problematic. I know
this because I had to overcome that one notion because I had an indelible image of “Popo” in
my head. The name was the concept. The name was what a person with a disability would
be. In a society such as ours a person who could not grow up and pass exams was not a
person. He could wander the streets. We find it difficult to think around the idea of
inclusion, because that would mean rethinking what we see as important and what we fear
most -a reduction of who we are as human beings because that idea is tied to a need for
ADVANCEMENT–for ourselves and our children. And advancement in our heads equals
brains and exams.

Since society is formed by its education system, how that educational system operates is
therefore crucial. The ideology and the aspirations that govern that system are also crucial.
We then have a problem in T&T. Our entire system of education functions as a food chain to
the SEA then to the High school system, then university—all governed by a belief in the
supreme virtue of “brains”. Parents do not want a child who will “keep back” their offspring
in the race for a place to one of the prestige schools. Teachers do not have time to work at
the pace of any child who has a special need. No. The school system systematically excludes
persons with disabilities. Other than as a gift, but not a right. Because a system built on a
consensus that what makes a child succeed is passing a certain kind of exam has no capacity
to genuinely include the rights of a child with a disability.

If the state sees a person with a disability as already being outside the mainstream, and if
there is consensus in this because images of what people with disabilities are and what they
can do have become part of the tapestry of our imagination, then accessing an education
within the mainstream is not part of the right that she can enjoy. The state can justifiably in
the eyes of society separate the child from society and increasingly nullify her right to the
enjoyment of society, including her choice of a place to live and a place to work.

Persons with certain kinds of disabilities in Caribbean society were made invisible as human
beings. As a literary scholar I know this because persons with intellectual disabilities only
began to exist in literary works in the Caribbean a little over a decade ago. Until about
twelve years ago there was only one literary work in the Anglophone Caribbean that
included a person with an intellectual disability. And in that one work, the individual was
deceased. We now have at least three major works that I am aware of because in that past
decade, a number of individuals have written about, spoken about, or insisted on making films
about persons with DS and autistic persons, three distinguished writers have sought to
insert persons with disabilities into the framework of their creative cosmos.

How does society historically justify behaviour and practices that dehumanise? Through a
process of making invisible or by making difference in itself something to be feared or

Those of us involved in postcolonial studies know that Indians and Africans were often seen
and represented as servile, unteachable, dependent, sexually promiscuous among other
stereotypes. These peoples could then be seen to be almost, but not quite human, and
enslaved, locked up, blown up and exploited. .

It was not so different for persons who have disabilities or who develop in ways that are
different from the norm. They were seen as childlike, like “Popo”, silent, without agency and
without capacity. Now there are persons with intellectual disabilities working in banks,
treading the walk at fashion shows, being entrepreneurs. Much has changed.

We now have to move towards seeing all people, no matter what their impairment, as
having a right to decide their own existence. As having the capacity to make decisions,
sometimes with support. In Ireland, quite recently the Legal capacity and Assisted Decision
Making Act was passed into law. This recognises the right of a person to vote, to own
property to make a will, to marry, to have a sexual relationship, but also the right to be
assisted in these matters by someone who has their individual interest to heart. The barriers
to taking control of one’s humanity, to live as one chooses need to be removed. According
to the Vice President of European Disability Forum, Pat Clarke:
“Not being able to understand leads to people treating our family members as not being
able to decide about their lives. It makes them dependant on others in a way that should
not be. Legal Capacity and Assisted Decision Making legislation is the only way forward and
will lead to immense benefits for our members.”

We think of persons with DS as lacking in capacity. And the way we speak creates images of
incapacity that attach themselves and become an idea of what it is to have DS. We may
avoid words that have become offensive, but these words are at the back of our tongues
and written into our laws.

Hence the reason that beyond the fact of disability as an evolving concept, is the further
clarification that disability results from the “interaction between persons with impairments
and attitudinal and environmental barriers that hinders (notice it is the interaction that
hinders) their full and effective participation in society on an equal basis with others”
(CRPD preamble).

If an individual does not have access to a viable interactive life within society, he or she
cannot develop an existence that fulfils the idea of humanity. That access must include
access to the law, to health, to education, to work and employment, and to recreation. Through
our interaction, we become fully human. On our own our understanding is purely
subjective. Interaction with others generates mutual understanding. It makes us part of a
human family. I did not say this. Hannah Arendt did.

I do not think naively that persons all over the world are going to open doors and welcome
everyone with a disability and all the stigmas associated with disability will magically
disappear overnight or over the next generation. We are all “human” and that means we
are frail and selfish and we like control and we certainly, as human animals, enjoy being the
leader of the pack and keeping the weak in submission. But is that not what social
structures and the law are about? Keeping those instincts at bay, so that the human person
is seen as an individual who continually generates new ways of thinking and acting; whose
existence is plural and who by virtue of that plurality and that interaction, recognises
through social systems that everyone has rights and —therefore —we must accommodate
those rights.

I am not saying that persons with disabilities should not be provided with the supports, we
all need to live comfortable fulfilled lives no matter how serious our impairment. What I am
saying is that as citizens, persons with disabilities deserve to be seen as full and equal
recipients of the right to access to travel, goods, education, health and to housing. As and if
that right requires additional support to be functional, then that support is my right as a
citizen who is more than an abstract human being, but rather, a human person who is part
of a society and who enjoys the benefits of full political status.

But I have to be seen to be such.

To change the future of persons with disabilities, in particular persons who have intellectual
impairments, we must first change how we think of them, how we speak of them. This is
what we are doing here today.

We need to replace the stereotypes that attach themselves to persons with what we call
special needs, with positive images, through all means available. And do you know that
people with Down Syndrome actually do have uncanny gifts? They possess a gift of empathy
that seems fairly universal. I tell the story of Eileen and my mother who had Alzheimer’s for
some 15 years. Eileen would sit and chat with her for hours, the two laughing and enjoying
each other’s company like two old friends. This continued even up to my mother’s last days
when she was incapable of rational speech or recognition—except that with Eileen, speech
with my mum went beyond words. But, I have heard similar stories from other parents of
people with DS. So, maybe we need to rethink our notions of communication.

This, I know, may sound like just another stereotype, an emotional make-believe. But, just
maybe, as in current literary theory we need to reconsider the uncanny, The unseen, the
irrational. Perhaps, even think that there are gifts which persons with DS have from which we in society could all benefit. Perhaps persons with DS and autism have faculties that we have not yet learnt to understood. Of course, there may soon be NO Persons with Down Syndrome or any genetic difference that can be ascertained before birth.

The words “evolving concept” looked at in the light of how we change our value system and
transform our idea of the human person, take on new meaning when we turn the lens away
from seeing simply a path to progress as we traditionally think it. We have begun. Let us
evolve and recognise that what we need to know about Down Syndrome and autism and all
forms of intellectual impairment and developmental disabilities —is that we are only
beginning to know.

Jean Antoine-Dunne

NODES Conference
The University of the West Indies
St Augustine
Trinidad and Tobago
21/ 04/2023

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