CDLP 2019 Belonging to Families and Communities


Welcome back to the second day of the summer
school. The theme today is human rights and family
life. Before lunch, (inaudible) the second part
is about legal capacity and family life. We have lunch between 1-2 and then the program
(inaudible) 2-3.30, we have (inaudible) then questions and answers after sessions. (inaudible) independent living and family
life. Afterwards, we will have a presentation and
wine reception in the lobby. There is also going to be an exhibition of
photographs that have been submitted by speakers. They will be in the room to the side where
you had breakfast this morning. That will be open and there is also (inaudible)
to describe the photographs. That’s a quick snapshot of what will happen
today. I’m delighted to be chairing today. Our panel speakers will have 20 minutes each
to speak on belonging in family life in communities. The first speakers are (inaudible) Rachel
(inaudible) approach to people with disabilities and community and connections. Her full biography is in the programme. Good morning everybody. I’m delighted to be here. As Charles was saying, I am with an organisation,
I am the director and co-founder of an organisation called Leap and it was set up by myself and
a friend seven years ago in response to the exclusion of our family members, are children
with disabilities. We observed and still observe that, in the
last 25 years, there has been a rise in the number of social movements for positive change,
the rights of people, LGBT I, environmentalism, black lives matter, me too, we still feel
that the lives of our children with intellectual disabilities and autism has not really improved
and we would like to ask you today to think about the reasons why that is. The full inclusion of people and our organisation
focuses specifically on children with intellectual disabilities and autism. Why has their full inclusion not been achieved
and why you have we not seen the support of global citizens towards the full realisation
of the rights of our children? We believe that family leadership towards
inclusion is a very powerful force for change. As an organisation, we harness the love, courage
and commitment of families towards the ordinary or normative life path. We encourage families to dip their child’s
toe in special services, clubs or recreation because we believe very passionately that
the ordinary is the most precious of all. And that ‘special’ does no favours. We focus not on services, not at all. We focus on three things. We encourage families to build a rich compelling
vision of an ordinary life for the child and to practice saying that out loud. We coach families, we coach them, we run family
leadership retreats every year we take the whole family away to the wilds of Co Cavan
on a retreat. Whoever the parents are, maybe the grandmother
comes. All the children in the family, and we focus
on the vision of a good life. We encourage families to move away from the
problems as it has been constructed in services and clinics for their child and to really
get them to think about solution focused. What could a good life look like for your
child and encourage them to dream. We focus on three things – relationships because
if you grow up with a lack of relationships, you are in huge difficulty. Belonging and that is my team today and valued
social roles because if you have just one role which is a career client of human services,
you don’t belong. That is your only role and it’s not a valued
role. We always used the metaphor of stitching and
teach families to stitch their families into ordinary community life. We focus on shifting from a problem focus
to a solution focus. We believe we are the people we have been
waiting for so I use family leadership. We work in an approach of intentional leadership
development so we recognise that families are reluctant leaders. They didn’t ask to be leaders. They didn’t ask to step up a powerful passionate
advocates for their children’s inclusion. Yet this is the life they have been given. How did the step into that role of accidental
activist? We talk about this idea of relational activism. We try not to be angry activists. We try not to be cross activists. We try to build relationships everywhere we
go. Even with people we really don’t like very
much. We try and work this relational activism because
that seems to work. Trying to build connections, relationships
wherever we go. Much of what is good in life, we really believe
is not in the currency of money. Relationships belonging values, social roles. These can be created without any money. Many families are looking for more services,
funding but we know it may never come. We are very captivated by this question of
what happens to people and families when hard times unfold. When hard times unfold. What can we do with little or no money? Let’s get creative. How can we increase people’s networks so we
build circles of support around families. We convene the networks, we set it a lot of
kitchen tables with families and we ask them who here loves this child? Who in this community love this child? Bring them here. Then we plan all day and plaster the kitchen
walls with posters about opportunity and hope and promise. None of it is about money. We have just sat on the government task force
for personal budgets. My son is 26 and he has enjoyed a personal
budget, individualised funding for seven years since he left school. He lives independently with a really good
support worker who is more like a coach or mentor and he is working and this September,
he is going to university. When he was a little boy, he was heavily medicated. He is to self-harm. We have transformed his life. He is on no medication now and he is back
living on the normative or typical life path. In many ways, because of these ideas we have
applied, from people like John O’Brien, Michael Kendrick and so on, there is a rich encyclopedia
of resources for the type of work we do starting with the person and going to a normative approach. Many families have already been crushed. The engagement, the compulsory nature of the
engagement has crushed the voices. There’s a story I like to tell about a tone,
a fictional town where, for 100 years, there was a group living on the edge of town who
were never consulted, never included and one day, the council decided the good people of
the town decided no we are ready to hear them speak. They went to the group and said no we are
ready to hear you speak. Then they were surprised when they had nothing
to say. When we disempower people and take away their
voice, there is a process for them to be supported back into voice, back into their own agency
and their own power. The fact that we are all family members, we
have one or two allies who are not family but they are like blood. As an organisation, we are led by families. That is a very safe space that we create for
families to come into power and their voices again. We get approached by families who want us
to help them to advocate for something that isn’t inclusion or to advocate for a place
for example in a group home or a special school and we won’t. We want to do it. That is difficult. You and I know that probably 90% of the activity
by families in this country possibly in your own countries is towards more special, more
segregated and more congregated services but not all families are the same. There are many families like my own who believe
in the full inclusion of their child. So, there aren’t many families we cannot work
with. We will actually, we will fight them if they
continue to try to segregate their child. As a result of families, very early on, being
encouraged to give away their power to services, they learn to lose belief in their own competence. I remember when my son was a little boy, we
were living and we had to go to a clinic in the middle of a housing estate, to get the
entitlement we needed. Something called the domiciliary Carer’s
Allowance, a small payment to the family each month. The public health nurse told me, don’t put
on any make up, make your hair a big mess, fill your child full of sugar. This way you will get your payment. This is the advice parents get, if you perform
tragedy you will get the payments, that is so damaging to families. We talk about the opposite, how can we incentivise
resilience. We advocate at the highest level, so the system
does not manage families any more in this way. We actually support families, for example,
with small pieces of individualised funding that will build their confidence towards inclusive
lives for their children. Today we are focusing on belonging, what does
Amita belong? How do we come to belong? I had a bit of an existential crisis writing
this presentation. Where do I belong? Who belongs in this room? Who feels they truly belong? A few brave souls, it is a long struggle for
all of us. To say we belong feels a bit like… I belong a bit but I am not sure. It is a very complex thing, to really feel
we belong. It is more in moments, in our minds, our memory
and the present. We feel we really belong when we are with
certain people, in certain places… Hopefully we have a home where we feel we
belong and we can take off our mask. Many people now to not have homes. Where we belong, the places we belong is really
important. **Audio lost**
It is predicated on a lack of social roles, a lot of work is around valued social roles. We have a practical approach to doing that,
very hands-on. Social ties, actually you could have lots
of social ties. After I have talked to you all for five minutes,
do I belong? I think belonging really comes from the valued
roles of life, I often give workshops on roles, called roles theory. There are eight domains in life, family, community,
employment, higher-order roles like religion or spirituality. Each of us, without necessarily thinking about
it, have required roles in these areas. When we are born, most of us immediately became
somebody’s son or daughter. Somebody’s brother or sister, so on… So, a lack of belonging, social exclusion
and polarisation are increasing trends across the world. Polarisation, obviously between rich and poor,
Christian and Muslim, black and white and so on… This is very dangerous, if we become tribes,
living in polarised tribes as the world seems to be going, we are in a very difficult situation. Aside from that, to use the word jeopardy
for the third time, these trends are happening in the wider society, it is far harder for
individuals with intellectual disabilities and autism to truly belong. I will fly through one of these. Not belonging in your family, we always say
is one of the greatest hurts. We work very hard at encouraging families
to look at developing the roles that already exist in the family. Often mothers and fathers will come to us
and say, “Well, my children without disability should not have too much responsibility for
my child with disability”. We will challenge that, we will say they would
not necessarily see it in those terms. This is their brother, sister. Do not decide for them, what their involvement
will be. For example, with my own two sons, on Thursday
night they went to see Fleetwood Mac at the RDS, my youngest son who is 16 stayed with
my oldest son. They stayed the night, had dinner together
and I picked my youngest son up, the three of us had lunch on Sunday lunchtime. All of their lives I have tried to create
opportunities that grow their belonging, to develop their roles as brothers. So they build memories as brothers. When my youngest son was born, it was hard
for him at times because his older brother’s behaviour was difficult. He would climb out of the window in the middle
of the night and sit in the middle of the road when it was raining with no shoes on. This was hard sometimes for his little brother. I worked very hard to continue to put them
in relationship. This is what we are talking about, building
valued social roles. Really intentionally working towards developing,
sustaining, maintaining all of the valued roles of your child with a disability. So that no relationships slip away, nobody
falls out of the bottom of belonging. We are running our first conference on the
theme, the topic of inclusive education. This October. Often we say, if you have to call it conclusion
it probably isn’t. We like to kick the tyres of inclusion, to
see if it is inclusion. We have 1500 units for autism in this country. The Department of education is finally prepared
to talk to groups like LEAP, who have said all along this is a bad idea. They are beginning to see the children leaving
these units are poorly prepared for adult life. In terms of getting a job, educational training. They are finally conceding, actually this
is not conclusion at all. Very many, very well meaning people, call
things inclusive when they are not. We have to be very careful about what is inclusion. Research has shown us that even a single instance
of exclusion can undermine well-being. Exclusion, segregation and so on. I need to tell this audience, it is very harmful
to the personhood of an individual. Belonging requires effort and practice, there
are lots of groups we can belong to. I list some of them there. Belonging also requires acceptance. Many groups, including our own families are
not used to being inclusive. Others may discriminate. Again, on a weekly basis LEAP receives emails
and phone calls, about how children have been excluded from ordinary family life. Directed to the door marked ‘special’. This is where special industry sucks the oxygen
out of the project for inclusion. I will end there, thank you very much. (Applause) CHARLES O’MAHONEY:
Thank you very much Rachel, the next speaker is Maria, she is a founding member of (inaudible). MARIA:
Hello, you are going to have to listen to me for a while. I’m going to talk about several communities,
I belong to all of these sometimes all of these at the same time. It will be possibly more social than what
I would normally do. I am a member of the (inaudible) here in Ireland. I am a member of the disability community
in Ireland. I belong to all of these things, but, how
I belong and why I belong is complex. There was a lot of talk about family and what
it means, what we get from that, in terms of stability and support. For me, blogging is up there as one of the
core things. Like, when you were talking about your chosen
family or siblings, your sports team family. That sense of belonging is crucial and something
that is hard to compare, combined with ritual and culture. So, if you were to talk about Christmas, or
other family holidays. What we do is this… What we do is that… If you talking about sports family, what we
do when we went… What you do with birthdays and friends. These practices and rituals create a place
that helps us understand ourselves. They create role models with how we see ourselves. So, we are in a state that places huge importance
on family. Legally, in Ireland, there is a lot placed
on marriage. We are going to talk about what that really
is, it is something that is much broader than that. Our cultural groups and friend groups can
play a huge role in determining what family is. Within the LGBTQI community, the idea family
is a critical concept. It is something that has shaped and bent how
we exist as a movement. It comes from a place where LGBT rights weren’t
quite so respected. People very much relied on a chosen family,
in order to be supported through. Understanding themselves as other and give
them the sense of belonging. When a lot of people talk about coming out
and realising they were gay, coming to the realisation that they did not know where to
belong. When you are from a marginalised community,
you do not see anyone who looks like you. That exists to counteract and pull from that. That chosen family and idea of a chosen family
can be really helpful to give you a sense of structure that could be lost. This could be really important to understand
ourselves as people and understand to separate out a lot of that. A lot of what we are told from the start,
as you probably acknowledge, (inaudible) a couple of members here today and one of them
Roisin is here. You need that family. To unpick the internalised ableism. These are important and they are important
on so many different levels. I’m going to talk a little bit about the interaction
between traditional families and these ideas. How
that interacts with traditional ideas of the nuclear family is a complicated and messy
thing that perfects the complexity of life and of family. I spoke to Rachel about where families fit
in within the LEAP model. With disability, (inaudible) within the LGBT
rights movement. Parents and friends of lesbians and gays,
I think they have (inaudible) in the definitions but they have kept the anagram. They had been powerheads of fighting for rights
of their sons and daughters and very much became one of our greatest allies in the struggle
for LGBT equality is. Especially in the United States were there
has been a terrifying and powerful organisation of pissed off moms. They became the kids greatest allies. The recognised the issues and the struggles. They were able to help them feel comfortable
in their own culture and within broader culture and society and to make sure that their sense
of belonging was not threatened. I know we refer to the referendum from four
years ago. During that time, what had been silenced about
what family was, parents started talking about the wishes for the daughters and sons and
the different family structures. They had that sense of place here. On the other side, this isn’t the universal
truth that all these interactions between traditional families or nuclear families and
these broader cultural families are a positive thing and from the LGBT rights perspective,
(inaudible) conversion therapy and other practices that were parent led. Possibly even it came out of the sense of
belonging that people do not belong to a culture any more. Traditional families have acted as a barrier
to that broader access to cultural family. Within disability as well, it’s another example
where your traditional family doesn’t necessarily share the same identity as a cultural family
and cultural identity and belonging. Again, Rachel, it was enlightening to hear
different forms of parental advocacy and activism. We know that from associations of conversations,
the ones Robert led yesterday, the parents felt there was a specific role for them to
fulfil. Possibly it went into… That was the intention of (inaudible) primary
rights holder. That is something I think we need to be aware
of and mindful of. Really good friend of mine often says things
like “Do you have disabled friends? Do you have friends who are openly disabled? Have they made an attempt to make sure (inaudible)?” To make sure that when their child is trying
to see their sense of space and belonging, even within their own family as well as broader
cultural families, that they have someone who looks like them or thinks like them. That’s important as well. That doesn’t take away that for a lot of people,
it defaults to that culture of crisis and disability being the problem. Natural part of someone’s being and existence
that belongs within that nuclear family itself but also within a broader cultural family
that the parent helps them be part of and I was moved by that. The other thing I’m going to talk about briefly
now is that cultural families aren’t always accessible families. That is something we need to acknowledge. Ellen spoke yesterday and said that the transgender
research centre in Northern Ireland is accessible, most of their volunteers have disabilities
which is exciting to hear. The resource centre for LGBT people in Dublin
is entirely inaccessible. When you’re looking at communities that traditionally
sit on the margins, the tent not to be in accessible buildings. They tend not to be inaccessible newbuilds. They exist geographically on the margins as
well. There isn’t always access, there isn’t always
accessible options there. There is a greater sense of belonging. If you were to look at… If we wanted to go to the women’s club that
exists in Dublin, it’s a big flight of stairs. People creating the sense of belonging need
to recognise (inaudible) this is what you ultimately get, the LGBT’s space who only
service the middle-class privileged people. It doesn’t serve other people. One brief note on belonging in childhood. It is again this idea of segregated education. I love hearing parents call out units has
been segregated education. When it comes to our cultural identities,
I think we fail to recognise the long-term consequences of segregated education. We remove kids from indigenous communities
for purposes of better education and with horrific consequences. We acknowledge removing these children from
the local community was a bad thing but we do it so readily with disabled children. The impact that has on their sense of belonging
and ability to exist within the world, if you think about it, if your education system
is normal, and not radically privatised, as it is in a lot of jurisdictions in the world,
you go to local school, that’s where you form your bonds with your neighbours, to get that
sense of community. And Ireland is what links you to your GAA
team. It’s a type of football. It’s what allows you to grow in the community
as a person. We deny disabled children across the globe
opportunity on the basis of giving them a better education. We remove them from those communities. When we talk about segregated education a
lot of the time, we talk about (inaudible) but we fail to recognise it does impact on
a person’s sense of belonging. By taking them from what is the most natural
community, the locality. Even in the cases where the segregation happens
within the same building, you are taking them from a chance to be part of the class. To be with their class. Instead of maximising their ability to be
part of the community, instead of growing and embracing that sense of belonging, (inaudible)
proved crucial. I’m going to say this quickly. We are looking at this idea of belonging that
exist across a number of spectrums in terms of the broader cultural sense of belonging
that we get a disabled people, as gay people. It also, the ways in which we interact that
also change and also separate are separate need to be nourished across the spectrum. I will leave it there. (applause) CHARLES O’MAHONEY:
Our third and final speaker on belonging (inaudible) is Executive Director of (unknown term) human
rights and social justice for trans and gender diverse person (inaudible) you have 20 minutes. LIBERTY MATTHYSE:
Good morning everyone. Apologies, my voice is a little bit cracking
on one side so you will forgive me if it’s not very clear. If I start, can I come off the podium? It can be intimidating being behind a podium. First, I would like to thank University of
Galway today for the invitation. Congratulations on (inaudible) four years
ago. (inaudible) social commitment. When I got the invitation, (inaudible) in
the space as somebody who is identifying as a trans-woman and a non-binary woman (inaudible)
constructs more generally. The first thing that came to mind was the
thinking of (inaudible) and Kimberly Krahnsure. These are black American feminists. We are not just one type of identity. We are not one identity, we have multiple
identities. It does not mean we are separate based on
those identities at the same time. That is based on the qualities of oppression
and how it functions in the world. If we look at somebody’s make up, their race,
gender, sexual orientation, gender identity etc. At those intersections, at any given point
in time, some people may find themselves more than others. For me, in our world there are LGBTQI identifying
persons and differently abled persons. Therefore there is a strong need for us to
be able to cross pollinate, to understand what these communities are going through,
for a sense of solidarity and to enhance advocacy. Sorry… Technology. I think I’m going to stand here, it is more
easier. So, in outlining the organisation I am from,
we started in 2006. We are predominantly focused on activism in
the community. Not just in South Africa. The work we do focuses on recent activism,
capacity enhancement for service providers and policymakers. We also look at facilitating access providing
services. We work predominantly in three disciplines,
education, law reform and access for gender. So, this is an outline of the presentation,
I spoke about the (inaudible) speaking a bit about the work we do. Of course, locating the subject matter within
the context of particular aspects of the presentation. We will look at underpinnings of the presentation. A literature review around queer rights. We’ll also look at the impact of law, medicine
and psychology in shaping belonging to families and communities for LGBTIQI persons. We will also look at what that says about
families and belonging. We will look at the principles (inaudible)
international law. Then we will look at the evolution of community,
family identity and law. In South Africa, we have advocated these international
instruments and being able to speak to how the law and society regarding families and
communities. A brief outline, from my understanding. Families, belonging, communities, identities
and expression. Human Rights Committee sexual and reproductive
health and joining the lens of Intersectionality. In terms of the first initial thinking I had,
when I thought about families, was what is this particular unit in the community, it
is a unit we all turn to, to find some form of care, support and love. That will enable us to reach our full potential
and the mechanism of being motivated within that space, affirmingly so. Although it was quite clear in my head, got
muddled up, in terms of how all these things in it with one another. This is kind of an idea of what went on in
my brain. Belonging to communities and families are
very much located in the mattress scheme of things, unemployment, economics, education… Cultural systems that often mediate what acceptance
looks like. What inclusion of flight. Also political factors, if you look at the
African continent, where, being LGBTQI identifying is not with the value system. Within the legal system, shaping the law. If you look back, at the framework around
human right, of course you want dignity, equality, freedom. That, by and large as also captured in the
fabric of society. Subsequent to the human right endeavour, how
does the thematic areas of the presentation interlink with one another? For example, how do communities relate to
sexual and reproductive health, how does human rights relate to sexual and reproductive health
etc. There is already an investment from country
to country, family to family. Some of the intentions that is very much caught
up in the conversation we are having, particularly from the African perspective, the South African
perspective, as the issue around universal human right and that relating to cultural
activism. The issue of what is moral and what is immoral, gender identities are often caught up within this. We are then looking at what constitutes a
family, in terms of family in law. Law often talks about what can be protected
and recognised as well. We are looking at traditional families and
the emergence of what some people would call modern families. These families have existed since time began. Also what constitutes a functional family. Those are the intentions I’m interested in
and this particular presentation around belonging. So, if I can contemplate somewhat on the problems
that we are dealing with. In terms of, how to integrate ourselves within
the fibre of our communities and the fibre of our families. We need to look at issues around the law,
issues around psychology and medicine, because these are determinate factors around much
discrimination we face on a day-to-day basis. Also, to what extent we are able to be integrated
within our spaces. I’m going to jump this one, I assume we all
understand ‘SOGIESC’. Sexual orientation, gender identity, is that
a safe assumption, or not? It is not, OK… I will briefly run through this. So, in the work of our organisation around
belonging, we looked at the different somatic areas within the Queer human rights. We first looked at gender identity and expression. It is very different to orientation and sexual
practice. Orientation and practice relate to whom we
are attracted to. Gender identity relates to how we identify
our own gender as human beings. How we express our gender within day-to-day
interactions. Of course, the assumption made about gender
identity based on the sex you are assigned at birth. If you are assigned male at birth, the assumption
is he will perform masculinity. That is a social construction of gender within
society. We all know there is not too sexist, there
is a third one. They have been in the media of late, there
is a link for exclusion to women’s sport, as an intersex person. (inaudible) there is a continuum of female
and male and beyond that. We focus on human right and how we understand
it as a organisation. So, elbow is very much underpinned by the
ministry. That then (inaudible) Queer theory for particular
understanding and purposes. I’m going to skip this for now, it will be
time-consuming. (inaudible) broadly speaking LGBTQI person,
find ourselves on the margins of society, the law, medical community, in terms of how
we are understood and how our body is understood as an abnormality. From a human right angle, it is a struggle
we share with disabled people. I am looking at the international human right
framework, speaking to families, our first point of call would be the Universal declaration
of human rights, that outlines every family is born free and equal. In the declaration had also outlines the importance
of protecting the family unit, as the core foundation unit of society. In addition to that we also have this, which
outlines that it should be no interference with the home or family unit, causing disruption
of that particular unit. We also have the international economic, social
and cultural human right. This outlines (inaudible) and expands that. (inaudible) when international law is being
admitted. We are looking at our original framework,
people’s rights. Particularly the charter does protect the
family unit. Now, there is immediate (inaudible) in international
law. (inaudible) we must (inaudible) around morality
and the value system. So it is not seen to be promoting anything
against the family and culture, homosexuality and people identifying, traditionally seen
in this context. This sets the tone as to how the community
is marginalised. It also speaks in the best interests of the
child, under the condition of the rights of the child. I know in the United States, there is case
law around how children should be (inaudible) in terms of families when it comes to queer
identifying persons that are also parents. The most important one would be the right
to found a family. It outlines everyone has the right to find
a family regardless of gender identity. It acknowledges families exist in diverse
forms and no family may be subject to discrimination on the grounds of sexual orientation or gender
identity. Or any of its members. It speaks to the domestication of international
law and protections. (inaudible) what type of legal mechanisms
to show commitment to (inaudible) we have mechanisms for people to change their gender
marker. It is highly pathologised. That mean the community will always understand
us to have medical disorder through the International classification of diseases and marginalisation
so we are seeing we are looking for an approach of how to depathologise
it. We have extensive equality laws. (inaudible) equality laws (inaudible) is an
anomaly. Perhaps in concluding, one of the key issues
we faced (inaudible) family has been arbitrary use of power by the government Department
of home affairs and nullifying marriages that were concluded under the South African marriage
act. It has at least three pieces of marriage laws
and legislation governing the institution of marriage. Traditional marriage as the oldest one, (inaudible)
nuclear normative family and of course lastly speaking (inaudible) union act. It nullified the marriages with one space
identified as a transgender person. (inaudible) a name change and they refuse
to say (inaudible) under the other piece of legislation which governs same-sex marriages
particularly but not exclusively. We intervened as an organisation to support
the couple and protecting the integrity of the family unit because a divorce would mean
dissolution of the marriage and of course all protections in that marriage. The outcome of the case was favourable and
the Department of (inaudible) Mandated to (inaudible) In essence, to conclude, if we are looking
at LGBTI persons and locating us from the margins of our communities and families, our
approach in terms of using laws the mechanism then public education forms critical part
of doing the work. We need to learn and unlearn what we have been told in our past and alter the
hearts and minds of (inaudible) diversity of being
human. We need to look at how we decriminalise sexual
conduct and how we recognise and include communities who have been (inaudible) framework. Thirdly, we need to educate governments to
be more human focused so we can have the political word to push through the doors we need to
see change in society that we want. Coming to a space like this, it means there
is a need to forge a sense of cross movement, solidarity and understand the issues in different
communities can (inaudible) consolidate change and lastly for us it is important (inaudible) how it pathologises
our bodies, human beings are different by the nature and how the challenges and the
community and being able (inaudible) agency and economy (inaudible) I’m going to leave it there. Thank you so much for listening.

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