CDLP 2019 The Convention: Drafting Opportunities, Challenges and the Committee’s Interpretations

CDLP 2019 The Convention: Drafting Opportunities, Challenges and the Committee’s Interpretations

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The speaker we are going to move straight
into our discussion with members from different parts of the world, looking at the conventions
of people for disability, the back door stories and the interpretations of the committee. There is a range of expertise and it will
be moderated by Eilionóir Flynn. I will briefly introduce you to our panellists. We have Robert Martin who is a leading advocate
for those with disabilities. He was and is New Zealand’s nominee to the
committee elected in 2016. He is now an independent expert. He is particularly advocating the institutionalisation,
right to work and right to choice. He is effective in securing policy reform
and has also written the book Becoming a Person. Our next panellists is Silvia Quan. She has been a disability rights activist
from a young age. A disability rights defender. She has worked with disability and served
as an independent expert on the 2011-16. Also a member of the National disability alliance. We have Eric Rosenthal, the Executive Director
of Disability Rights International. Particularly looking at children and working
with older international law. (inaudible). Working with people with disabilities. He is also a professor at the Washington College
of Law, teaching and academy in 15-16. University of Georgetown law centre and a
doctorate of law published in 2016. Thank you, and welcome back everyone. I will start straight away with a question
for the panellists. I will pose a question and ask each panellist
to respond in turn. We also have Alexia Black who is assisting
Robert. My first question to each of you is what was
the most important part of the drafting of the UN Convention? Sylvia? Thank you
very much for inviting me to be here. It is an honour and to share this panel with
my very old friends Eric and Robert. They are not old, we just have an old friendship! To respond, I would think having such a big
number of people with disabilities being involved with the process, we are such a diverse city
of richness, this is all brought into the process. Through the lived experiences, it was really
groundbreaking within the UN. Before this process was taking place, I do
not think that UN ever had an intense and rich approach to people with disabilities. In this way, I think the concept picked up
came from people with disabilities with the lived experiences. With the human rights set out in the text. There have been things that people with disabilities
have been going through. I think the richness in the reponse is there. I did not think they thought that people with
learning disability could participate. We proved them wrong. We have people from other countries like Panama,
the Arab states, someone from Africa and a few people from Europe, Croatia, someone from
England and I’m from New Zealand. I think Article 12 was the important one for
me. It wasn’t a
convention for those who found it difficult to communicate at the convention. Why have a convention for people with disabilities
with a whole group. I fought tooth and nail for that to be in
there. There was Article 19, living in the community. People have a right to live in the community,
in a family environment, and not be segregated and institutionalised. That is why we brought other people. I did not have an education, so I could not
talk about that. I did not grow up in a family environment
and could not talk about it. I could talk about institutionalisation. I could really talk about that because I lived
in an institution when I was 18 months old. I do not think we should take a suggestion
from the 17th century, the 18th-century, but not now. We need to get rid of them. A blight on society. Also, education is important to me. I think I said to UNICEF, “those special people.” I got up and said “there is nothing special
about being special.” There isn’t. What happens when you leave school? There is no special job or community or society. Why are we special? Also, this whole thing about institutionalisation. I was saying it was called, institutions are
not about bricks and water, it is about the thoughts, feelings and actions of others that
make it so. Thank you, it is a real pleasure to be here. If we are going to pick a favourite article
from the transformative, I think I would agree with you, Robert, on Article 19, the right
to community. There is so much we wanted to do when we set
out a draft treaty. It is to fix the problem of previous treaties,
looking at the way the existing human rights framework was limited. To my organisation, disability rights started
five years ago before there was a disability treaty. We were looking at using the human rights
Law to stop the most serious abuses we could find anywhere in the world. We found those abuses and institutions, orphanages
the children, psychiatric facilities, we found and social care homes, facilities and where
people were locked away. At first, when we started out, we thought
we could fix the torture, the abuse, that each humanising treatment that we found inside
these institutions. But we quickly discovered that this was a
discovery very drawn to the disability rights movement and civil rights movement, and what
came before us was that you cannot fix problems assumptions, you get people to society. But all of this had built up assumptions as
well, that you could provide better care and you could have civil situations. There was a thought that some people had to
be in a situations. So that conventions on the right of the child,
Article 20, that the child is suitable to be placed in institutions. Institutions cannot be made searchable and
no child should ever be in as institution. That is why that protection and transformation
on that intervention, the right to live to me changed everything. Thank you. Related to the point that you are making,
I wanted to ask about that the decision taken about the negotiation of the treaty, it is
clear when we read the treaty text, it’s about the rights of people with disabilities and
sometimes, talks about families, but only the context on the right of people that have
a family and the right to not be separated. Not the rights of families and disabilities
as a separate thing. Is that controversial? Do you remember if there was a lot of discussion
about that? Did anyone feel there was not enough attention
made to that value within the text? Certainly. There was a lot of controversially and discussion
around whether families with persons of disabilities should be entitled to be holders of the treaty
not. I think, finally, the outcome of the CRPD
was that the real type of holders of the CRPD, the human rights that were protected by CRPD
were persons with disabilities, their families could have a very important role in fulfilling
those rights. But that human rights belonged and were to
be filled for Persons with disabilities themselves. I would go even a little bit ahead in time
and for those familiar with the work of the CRPD committee, that CRPD committee just had
a talk. Lastly, they had an external comment number
seven regarding participation in numbers for people disabilities, representative within
organisations. And organisations making processes. It does develop a lot on how families can
participate and facilitating or supporting the participation of Persons with disabilities
and complying with the rights enshrined in CRPD. I think, yes, it still controversial and I
think women today after 112 years after the CRPD been adopted, families are still fighting
to be recognised as titleholders under CRPD. I think we should also be very clear that
even though there is not a denial of the role that families play to fill with the rights
that persons with disabilities are those people, those persons that are the real titleholders
of these rights. Thank you, Silvia, again. And I’m going to reiterate what Silvia said. It is about stressful at times. I think important thing is what experience. So doctors said, “Put your son in an institution,
throw away the key and forget you ever had him.” Basically. I do not blame my family said that, I blame
the system. And I’m afraid. Even today, even the system is letting us
down. I think with other DPOs, I would have to say
they certainly did not want the word ‘family’ there. I think the other thing that I asked as Article
4.3. And I often asked countries, “Does your country
support people with learning disabilities to have her own organisation?” And I would just like to say that there are
still a number of countries, people with learning disabilities are invisible. For one, they do not answer the question they
asked or they say, “Well, we sent them to the holiday to a summer holiday, at the institution. We sent them to a holiday for another institution.” I just about burst out laughing because if
you had said that to my friends in New Zealand, they would have, well, I could not hear what
they would have said, but it would not have been very nice because I have to say that,
you know, we’ve shut all institutions in New Zealand and it is not one left. We still have houses that they think people
live and I think for me, it is about people making their own decisions of the fulfilling
who they want to live with and where they want to live. We still have the same disabilities, so often
people of Autism live together and we have just not learnt from our mistakes of the past,
we still do the things that we do 30, 40 or even 50 years ago. I have been involved with people with intellectual
disabilities for the last 60 years. So I mean, I have not just kind of broken
down, I’ve been part of it and I been to other countries. Even those situations in Australia, believe
it or not, as well. Thank you. Well, the transformation of this to people
with disabilities from the family. An interesting twist is that Article 23 provides
the right to protection against the breakup of the family based upon an disability of
the parent or the disability of the child. If you are protecting the family from this,
parents from disabilities having their children, you are in a sense, protecting them, basically. And you’re protecting families with people
with disabilities. And one of the interesting implications for
that is that children who do not have a able disability are protected by the convention. And I think this is really crap, I think it
is important to not only realise how interconnected. These rights are, but that’s fundamental to
protect society as a whole. By protecting the people of disabilities. Around the world there are 10 million children
in orphanages. And of those children, 80 to 90% of those
parents have parents. What of those children in orphanages of those
parents had not been discriminated against and had the opportunity to have their children? Parents are labelled as unable to have their
children. I believe this is discrimination and it is
about protecting the children. Article writing provides the right to support
the community, and Article 19 is fully supported. Of this, and numbers of children with or without
disabilities. I forgot also to add that something that is
very groundbreaking with the option of CRPD is Article 12, integration fully of capacity
with all persons with disabilities. I think this is very important when considering
whether people with disabilities and/or their families other titleholders of the rights
because in a ways, many times people that had disabilities were denied their rights
based on capability, for some reason this was a difficulty for people disability when
they wanted to exercise their rights. Article 12 is interrelated directly with Article
23 and the way that people with disabilities can now fully exercise their rights in line
with CRPD as a way of, not, again, not denying the role that families play in this exercise,
but rather as a general comment of numbers reiterate that families should have as an
assistive role in the persons with rights and disabilities. Thank you comment, so in this process, did
you hear much from people from gay and bisexual people or persons that were transsexual etc? How do this come up in communication? I must confess I did not see much hypocrisy
from LGBTQI+ groups. It was very centred on disability rights intersectionality
with other characteristics like ethnic minorities, migrants and refugees, but I did not hear
much about LGBTQI+ rights back then. But I do feel that maybe this was one of the
things that was not taken up so bly. Or maybe absent from CRPD to say that. Thanks again. I have to agree with what Silvia has said. There was no LGBTQI+ there. Groups there. I think other than that what Silvia mentioned,
there were Indigenous groups in this. There were some there. But yes, it was a lot of people with disabilities. Even us, we didn’t have many women. I think Silvia mentioned, education was one,
working was another. So we still have them but I think they are
as bad as the institutions, I’m afraid to say. And I think they are glorified babysitters. People do not work in these places so much
as they do art and all that kind of stuff. But I think making that convention real, we
had to go through those things and discuss, you know, for ourselves, you know, because
I think when you only think of it, you think about people with learning disabilities and
they would be part of this kind of thing, where they kind of still think other groups
have been around for a lot longer than what we have. So, you know, we have got a lot to learn. I think being part of this, disability world. It’s really important. We are part of a disability society. And I think that is really important. We need support from our friends, they are
part of that, the disabilities. And I think it’s really important. You mentioned family groups. Was there ever tensions or disagreements between
people with disabilities, stopping them from working together? There was. I remember one occasion where two parents,
and I think they asked what they were therefore. Phey said that one had a daughter with special
needs and another lady had a son with autism and he could not speak. Neither could the other girl. That is why they need to show people that
there are people with learning disabilities who need the support of families. I do think there were tensions. I think they saw the need for the families
to support the son or daughter. We can speak for them. That is really important. I think people with learning disabilities,
we don’t always agree in families. We have our own things and the way of doing
things. We need to learn to accept our differences. We are not the same. People thought people with learning facilities
were all the same. Do you want to comment? There was a negotiation process, talking about
if the family should be included in the CDLP or not. It reached all of those who were participating
in the process, they reached a disagreement that the rights of people with disability,
persons with disability, were urgently needed to be recognised. As title holders, but we were discussing the
urgent need for the rights of people with disabilities needing to be respected. You mentioned Article 12, 19 and 23 on the
family. A lot of reasons have been mentioned, including
the right of the child, the parent with a disability or a child. We have also talked about the right to marry
and the right to form a family and also the right to make decisions. If there are any objections, or what were
the basis, why did they object and how was it dealt with? Yes, certainly, there is a phrase within article
23 about the rights for those with disabilities, and it responds to those working with people
with disability. In that many countries of the world, there
are laws prohibiting and it does happen. It is a widespread practice in most parts
of the world. People with disabilities not being able to
help children, a person with disability is not going to be a good parent. I would think those who would oppose this
phrase being included did not come from the disability community, but from service providers
and other institutions and organisations who were supporting the people with disability
and that is something that should be kept. Yes, I think from our perspective, with learning
disability, I think it is still out there that people never see us having this right,
to get married and have children and raise a family. They are still alive and well and a lot of
people do not agree with it. I have been married for 32 years. We do not have kids but that was our decision. I know people who live with the children and
have still got them and they look after them and they have not had them taken away. People with learning disability often have
their children taken away from them. As Silvia said, they do not think they can
look after them. We have got to have things about teaching
people, courses on parenthood. How to raise a family. All of that kind of thing. We need that so people can look after their
children well. We don’t get them taken off them and shutting
them away and things like that. Also, the right to be born.No one touches this with a 40 foot barge pole. We brought that up in New Zealand. They allow sterilisation for people with disability. It should not be allowed. It is a woman’s choice. Also, the doctors do not give the right information
to the mothers. If they are going to have a child, they need
to be given the right information so they can make the choice themselves. People with Down syndrome are like you and
me, unique and great people. To eliminate that kind of disability is extremely
wrong. What are we doing here? It is morally wrong They are making people extinct. The convention, we got the most pushback was
on Article 12. We talked about the right to reproductive
choice They cannot decide about having children, but you have community integration who take
away the choice of those with disability. It is essential for all aspects of community
living, but the real pushback happened there. It speaks in the most deepest sense of prejudice,
looking at people with disability, believing they cannot really do that. The pushback was coming up with creative ideas
on how people would mix. The right to support the decision, and making
the decision through community support, friends helping them, and also supporting the decisions. It fundamentally changed that. I think that very discussion is a learning
process. I saw it happening in the discussion at the
convention. There were many government representatives
started saying that they can expect people with disability to do something particular. Actually, they can do it. That was transformative and the key to the
protection of many rights. So now that we have the CRPD and the committee,
Silvia, you serve on. So the committee is being committed to what
needs to change, but there is still a lot of misunderstandings and thinks we’ve been
talking about. So how do you think we can achieve this and
what worked? I fully agree when you explained about the
pushback, I agree, of course, that there is a big movement from professionals to stop
this institutionalisation process or two, rather, there are other forms of institutionalisation,
not real institutionalisation, for example instead of having one with 1000 people, they
would create one to 10 or 4 people, which, according to the CRPD which would be an institution,
but because they look like institutions, a family type, and I think there are still big
challenges, and I think it’s about providing them with the necessary support to really
be integrated. To be integrated in the way they choose to
live, so this is still a challenge. In regard to Article 23, even though it seems
that it’s very clear that persons with disabilities should have the right to live with their family,
there is still many countries where/when a family, when a child with the disability is
born into a family, many times these families are forced to place the child and institutions,
not because they want to, but only because services provided that way. So it’s really up to services to understand
that even if they do not see it, and they do not see it as forced institutionalisation
and they are separating families and children grow up on these institutions until a certain
age and not be integrated into their own biological or original family. So there is still a lack of understanding
that when services are provided in a segregated manner, it still segregated institutionalisation
of them and this is still a major challenge. Thanks, Silvia. Thinking of the smaller groups, to me, whichever
way you look at it, it is still an institution, people are not making choices or decisions
in their lives. When they go all out together, where is the
individualism of people? We are all individuals. They treat us like one person. This is a big misunderstanding. You know? About that countries think that these homes
are lovely. I would say to them, go and live in one and
find out. Because you will not think that afterwards. Another big one is the difference between
planning them and that people talk about accessibility. Accessibility is also about information and
information is really important. We know that easy read is not only for people
with learning disability, can be for migrants, I know that in New Zealand people who are
Deaf users as well, and those people too can probably use it, I know that my experience
from being a New Zealand, this can be good for foster care and things like that. People that have not had that education. Families should not always have to speak up
for us, but we should be able to speak up for ourselves. The Universal Declaration of Human Rights
came out after the Second World War. So why has it taken so long for 1) women to
have their rights 2) children to have their rights 3) Indigenous people to have their
rights and 4) people disability so their rights. That is a need in the last few years that
people disability is that rights. Why is it taken so long to do this? I ask that question, when we started doing
this, nobody can answer the question. Both Silvia and Robert mention this issue,
which is a hot topic right now. Robert and I were on the panel last week with
a group, as one who is in working to 25 years to fight this horrible abuses of institutions,
it’s been heartbreaking for me to see how, you know, when people will put away and big,
old, marble filthy orphanages, the response has been instead of getting children out of
them, to build nice, pretty places, and have all the residential care, the truth is it
is much harder to fight those because they seem nice. So people
think that their needs are being taken care of their. We have learned through signs that the nicest,
cleanest home is still detrimental to children. Despite the way we develop, every human being
needs warm emotional attachments to a person that they love. So if you do not have the ability to form
emotional attachments, and you do not form this at an early age, you may not be able
to form the steep psychological connection again. There is a lot of cognitive development that
happens earlier on, people fall behind cognitively within an institution. Last week and New York, Roberts said at best,
you talked about how they put you in a facility, they said, call the space in your mum, Corbis
person your dad, and you said, “You know, I was not stupid, I knew there was a person
that was my mum and my day, and it was not this person.” and if this person comes to you, it is different. So it is damaging to think that the child
is being taken care of. It is really not, and it’s an immediate threat. So that is why the subtle differences in language
really matter. And why the Convention on the rights of the
Child falls short. It has been interpreted to say, I said earlier
it allows the smaller the situations, so while they say it is about the adoption, they say
it’s about family life. So as a family life that they go home to at
the end of the day? You can call it that, but that is not family. This is where the CRPD is different. An Article 23, it says if they cannot keep
the child . The immediate family, then put them in next and family, and is not extended
family, it has to be in in some form of a family environment, not a family like facility. The language is subtle but important. And it is never occurred to the children in institutions or institutionalised care under
CRPD. Family, writes a reader protected and this
is the 30th anniversary of the Convention of the rights of the Child and it is the 10th
anniversary of something called the UN guidelines for alternative care of children. It was drafted to implement the rights of
the Child and they were drafted with the assumption, and they say and at the tour institutions,
there needs to be a plan for the closure of institutions, that residential care is essential
needs to be met. Well, the UN special (unknown term) said that
the UN guidelines of alternative care do not protect the rights stipulated in the CRPD,
they need to be revised and fixed. This is not OK. So now we have two competing systems, we have
one on the rights of the child, and one with the rights of peoples disabilities. So this year marks the anniversary is and
it is to adopt a new resolution on the protection of children without parental care. If the Gen assembly uses the CRC model, and
you put the child in residential care, so it is about recognising the rights under the
CRPD that will be lost. So it is about the fact that we at the CRPD,
this is happening right now, if you within your own countries are working on these issues
new seen similar problems moving from a situation is too small, cleaner facilities that are
still really institutions, please come up, talk to me, I would love to be in touch with
you because we are doing organisation (unknown term) right now. And we are looking at the actual definition
and not compromise on this issue. The subject of this conference, the right
of family is a hot topic, and glad we are organised about it because we are to stand
up on this. So I just want to remind you will that we
will have more discussion on this issue tomorrow, so now I’m ready to open up for questions
on the drafting of that.

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