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Anyway? We will start the

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remote

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in this session. The each presenter

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make each presentation. After that the you stay the front and the we have a answer on the question, the question on the answer sessions. So, Initially you present in after that the all

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the come to the front and the makeup and question and answer sessions. So first.

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someskin scheme.

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okay, up. Who is the?

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So could you start

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to just hold on. Yeah.

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okay. which is something.

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And I have 15 min.  I'm happy to be here and to present my research.

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my ongoing research that I started some

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20 years ago, perhaps about the institutionalization of care for persons with a psychosocial and intellectual disabilities.

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And so I will briefly speak about that context before the start of the institutionalization and the stigma surrounded the large residential tier institutions in Lithuania.

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Then, I will briefly introduce to the beginning and moving forward of the institutionalization of Kia. We started well, a bit more than 8 years ago, in 2,014,

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and then

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I will present the research that I did with the 3 more colleagues of mine at Wemish University. How geographies of here are changing, and how they follow how the geographies of stigma also follow the changing geographies of care, and then I will

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jump to the conclusions through the lens of the 3 strategies, find the fighting stigma introduced by Patrick Corrigan in 2,001 at information, communication, and protest.

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 Before 2,014 in Lithuania we had 28 large residential care institutions.

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And the average itself was around 250 and residents in each of them.

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the smallest one

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jorge:  and over 500

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a residence in total to my 6,000 residents throughout these institutions, and 3,000 staff members.

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social worker, social work, assistance, then

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all the.

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and

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they were invisible to the broader society. Usually they are located in the middle of nowhere, far from larger cities on these roads, and no one.

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Almost no one was visiting them except for some family members.

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and the people living in those institutions were also. I almost never allowed to. To.

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So

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yeah, outside the.

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So. yeah, that is almost the only way to achieve the institution. Was that

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so? That's why the dishonorization is often defined as a death sentence to those who end up in these facilities.

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And of course it's also a place of very severe.

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and there are some authors who analyze the

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geography is. and their election to mental health.

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To this ofness and mental health and G. Of power.

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geography of exclusion, spatial practices characterized by, and the unification of people with disabilities and many more. And here you can see pictures, and if you pay closer attention in each of the picture you will see either

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a water tower or a chimney, and these are pictures from Lithuanian residential institutions. I found them on the Internet.

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Wasn't the also of these pictures, but back in 2,004 and 5, when with a group of human rights defenders of disability activists where it is a

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and doing a monitoring of human rights in the

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social care institutions. We didn't have Google Max Apps back on that time, but when some were

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in front of us in the horizon, we saw a chimney, or about an hour, we could predict that we will reach finally our destination.

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and here I would like to quote the and of power.

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I was a Minister of Health Magazine.

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and and here.

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maybe they have to pay us what our speech and I quote

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There they stent isolated, majestic Imperials brooded over by the gigantic water tower and chimney combined, rising unmistakable, and down Dick out of the countryside.

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The asylums which our forefathers built with such a man's sovereignty to express the notions of their day, do not for a moment understanding the powers of resistance to our.

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and that it was one of the beginning of the institution of Kia in the United Kingdom, and

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50 plus years later, 55 years later, that the

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and the action plan 2,014, 2,020, for the transition from institutional to community based here marked the beginning of of this reform.

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Lithuania. This plan aimed to create opportunities for persons with disabilities to receive community-based services.

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and in their slides of the community. I suppose, as I as possible. the main forms of support and accommodation in Lithuania are now group living homes and shelter, housing andommodating around

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maximum of time. Residence in each. And actually this maximum is almost old, enriched

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the local communities turn into the targets of essential expectations both from the site of people with the stabilities and the government

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attitudes of community members have a significant impact on the well-being of people with disabilities in the process of transition and the extent their vulnerabilities manifest themselves further in the process of inclusion.

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Currently, at around 32 group homes, and I think last week

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one more open source.

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and across Lithuania there are certain requirements that are removed it, that they are not small, but it is a supermarket.

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The library, for instance, outpatient services, also professionals providing services, social services, health services, educational services, vocational training, and so on. So these communities are not very small and not isolated.

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and it is expected that before 2,030, all large residential, the institutions that still 28 operate.

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of course.

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and here are excerpts from the newspapers. They are all in the twentieth, but all of them concerning the protests and local communities that the

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resettlement of persons with disabilities.

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So in in some pictures you can see some gatherings of neighbors who

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planned, and a lot of strategies how to avoid the neighborhood of persons with the simulators. So

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here we can speak about the stigma and the backyard.

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The communities.

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speaking of stigma before 2,014

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persons, with mental disabilities, were considered as brilliant and unproductive members of society.

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and, according to Lincoln and Philan, who analyzed the stigma towards the persons with psychosocial and intellectual disabilities, but especially psychosocial disabilities.

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and the large residential key institutions were designed to separate the labeled persons from the Western society

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them

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exceptionally paternalistic approach by the state and comprehensive institutions.

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Here

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also the Soviet heritage

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 Which included them

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the

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exclusion with the aim at the declarations about the purity, homogeneity, and the health of that, so the to to bore resemblance to the reality. So when people are locked down in the remote areas in Russia.

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So the institutions that society appears to be something.

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See if and homogeneous. After 2,014

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 we can speak about the philosophy of the identity civilization, one of the authorities yet who organized the protests in the global communities in Canada.

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for all the

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the institutionalization movement. And there is fear that newcomers with the stabilities can change the local community, social, public, of happy to serve in an unexpected and and unpleasant way.

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Also, local communities worried about the potential drop in the quality of life in many or her. And

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I don't know if it's most important, but very important is that community members feel that they were not properly informed about the relocation of people with the stabilities into their neighborhood, and were not involved in the decision making

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that they just found out in the local newspaper a small message, for instance, that there would be a community

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I live in built in in the neighborhood or in that street there is a small poster.

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and

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with the information that the funds of the European Union will

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finance the building for people with the disabilities.

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So with the the

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the 3 colleagues with the research started in 2,019,

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and it lasted of 2,000. And

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to what?

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We selected 3 types of communities. that differed in how the State officials approached them in order to involve them in there being a citizenization process.

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we observed.

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we also collected most media publications

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which concerns between distractions towards the civilization in the neighborhood.

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and we have organised the data and put them into 3 main categories, including the possibilities and attitudes of the new actors.

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What were the motives of conventious opposition to the institutionalization and the premises of arguments used for data to civilization. Additionally, we draw echo maps for them.

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Community members and persons with their disabilities also conducted interviews with both groups. and there are quantitative media research

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of a lifetime.

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So there are following arguments that the Government uses to to justify the institutionalization of care.

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One of them is moral debt, which needs to be redeemed.

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and that my concern

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segregation during the Soviet times, also international and national legislation governing the rights of people with the

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also the arguments of the need for the moral growth of society, democratization, and that sanitation.

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But the phenomenon of stigma was almost never properly addressed and considered, and planning and incoming. That was one.

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So there are 4 groups

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that we distinguish the community members.

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They can be defined as agents of the localization.

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while people of disabilities are double victims of stigma. They were stigmatized by living in large institutions, and they are stigmatized now when they were allocated to the communities.

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then the authorities and and communities. A government ignore the importance of stigma and contribute to the socialization.

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changing geography and use media. They were actually

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and the ones who voiced the arguments of loudly opponents only the ones who were in favor of the antidote, civilization.

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what the

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and conclusions.

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and, according to Corrigan and physicians, information is one of the means to fight monarch of stigma. However, the research that we conducted so lack of information, exchange, and a controversial media role.

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the communication between the representatives of the ministry and the local level is restricted to formal legal requirements, and does not involve all or even

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actors, and

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it recognize that social content

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and the news media.

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the one who is responsible for providing the information. A china incident. So it becomes an active actor in the the so the soilization process only after the social conflict arises.

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usually the media depicts only the arguments that are articulated by hostile community numbers. And then it's pictures the entire community.

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while the positive representations of people

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it just that we have to to meet

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 interactions between citizens and persons with psychiatric disabilities is also one that we need to fight stigma. However, our research showed the absence and avoidance of these interactions.

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And for some community members the the feeling of being excluded from decisions regarding the inhabitants, drinks out the worst fears of.

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That's exactly the one it's the. And they have to never make the 4

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with the similarities

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where they were perceived as they interest others, and so

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to the

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and the protest that third strategy, and, as suggested by Collagen at all.

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and

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it should suppress negative attitudes and representations of mental illness, and that can include, for instance, I just take my complaint.

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what our research should, that the

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like a different

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aspect of the protest it demonstrated that protest was used to express instead of suppress, negative attitudes and representations of

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on this. So I guess I will stop here and to

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content contacts.

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Thank you.

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We move to the next.

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He's good.

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Sorry I'm just

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it will be.

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Can you hear me.

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George?

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No. Hi, George, if you can currently hear us. I just wanted to let you know that you are on mute.

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Okay.

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jorge: can you hear me?

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We can hear you loud and clear. Yeah, George, would you like us to have your presentation, or would you like to share the slides on your screen.

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George? Are you able to hear us online.

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I

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sorry for everybody else who's listening online. George, just to let you know that we currently have your presentation slides on our end.

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Would you like to share it on your screen and control the slides? Or would you like us to control the slides on our end?

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Can you please repeat that.

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George. If you're comfortable, can you please open up the chat option on Zoom, and I'll communicate with you via the chat function

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jorge: where

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jorge: the now I can change them.

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 1, 2, 2, 2.

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He's hearing

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audio is going through legislation.

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So George.

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if you can hear me

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george in order to be able to control the slides. You need to share it from your screen.

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jorge: I want to change my scheme.

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I'm not sure what the Ca, she is.

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Okay. Oh, you can use your slide on your side.

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jorge: mine!

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jorge: You can do it.

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jorge: Okay, I will. J, but they no, I I can say I can say

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jorge: change, and then you change it right?

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Not a problem. So I'll be able to help you out with that.

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So, George. you can start when you're ready.

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and whenever you say change slide, I'll move on to the next one.

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Hmm

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jorge: the

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next.

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jorge:  I first I want to

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jorge: to be clear what they mean by a real inclusion.

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jorge: That is J. When oh.

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jorge: one actually very important in the inclusion. If you have a normal job, that is to say, a you have with a way, a as as the people of the

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jorge: we then said Independence, using

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jorge: the

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jorge: a decision. that is.

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jorge: But do I really see you. They are live.

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jorge: They have to have a financial support, and they have to have a recognition of the community. And for all these things it's important.

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jorge: and normally you

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jorge: well, The the

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jorge: well it was it

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jorge:  the the

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jorge: there, I'm sure you over there in this

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jorge: breaks the normal situation of life, that is to say, work 5 min there.

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jorge: A. And in this sense the people you usually have is in the hands of their families.

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jorge: Change.

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jorge: Yeah. yeah, there.

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jorge: that you say that the experts for their family is.

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jorge: I have a in the research. I have many er impressions very that to say er

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jorge: and then they.

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jorge: and that though that I have, I say, as a consequence, that the family is afraid from experience, and you a new problem with the person

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jorge: unusually, and the family has to, when not the only money, but they lots of with the that bar. Then they are they are live.

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jorge: and then they they try that. There's no other.

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jorge: That

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jorge:  yeah.

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jorge: that you say, I say, I say to the the person usually the lost their work on our studies, and that means that he depends on the protection of their family. And then the family is a Fred from er

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jorge: I'm sure a new cases

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jorge: on, for the reason they are they are over protective.

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jorge: The next.

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Yeah.

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jorge: the next. It's

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jorge: with that. it's, I'm sure the problem as well. A good work that on here.

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jorge: Yeah. 2322 a

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jorge: was. Most people have not in normal work

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jorge: the family. And that, they work in the shelter and workshop.

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jorge: And they there is a low to have 1% of disabled person in big interpretation. But they

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jorge: said in deeper.

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jorge: if they do have another work. He's living in the they form an unknown family.

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jorge: And then, and because of that treatment, usually that then farmer autonomy of the teachers.

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jorge: they usually

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jorge: and provokes a dependent behavior.

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jorge: Yeah, there

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jorge: the other side.

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Yeah.

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to the finish.

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No sorry

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jorge: cool.

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that's all. That's

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that's all that we have.

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jorge: George we have just

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jorge: that's right. So

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jorge: in 10 to

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jorge: the of a a normal life that he that about because of the stream on the the the

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jorge: yeah.

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jorge: the social.

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jorge: Probably. For example, you have a a good job to have a a

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jorge: to to make, to have a a to, to, to, to, to, to, to unknown family.

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jorge: to

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jorge: to.

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jorge: Hmm.

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jorge: Umhm

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George. the we have but just a fourth ride. can you?

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jorge: aside in told and a real inclusion means that the person have be integrated in a good job to have an own family, and because of the steam and the problems that are rose from the upstage on the illness.

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jorge: That is not the.

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jorge: is it not the fact

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jorge: of the situation? most people will

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jorge: with a in social

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jorge: to that to be to have a a good own family, and that is true only in a few, in a few cases that is in the that is not possible.

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jorge: Thanks.

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jorge: Well. that's

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jorge:  just me

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finish. Huh?

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Okay.

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those you finished. Okay.

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can you hear me?

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Okay, we invite the next speaker, Olga Boroddin.

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Okay, thank you so much for this opportunity to be here and to share with you some results of the project.

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We are now realized in St. Petersburg, with the support of Russian Science Foundation.

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And actually, this project is about the social support, different kind of social groups which are the groups which are in very available discrimination situation. And one of this group is, if you have.

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we can't see you.

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And one of these group people with mental disability. And actually, in my presentation, the focus will be on the exclusion of the children and use with mental and autism spectrum disorders.

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So it's

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the number of the people with mental disorders and with

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autism. Spectrum disorder is increasing everywhere, and the World Health Organization estimate is that one of the every one counter-children will be diagnosis with autism, spectral disorder. actually, it was all right just starting last year.

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on this picture you will see the number of the increasing number of the children with disorder in Russia, so you will see the last. How much is the number is increased the last year, compared with 2,021.

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Of course there is a few different reason for such kind of the dynamics. It's not. It's not now only means that the people with this Mental. Obviously problems are on, but more and more than it was in the past. Also one of the reasons that diagnosis is going better and better

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so, especially concerning such kind of the disorder like autism. Disorder in the past actually was not really early diagnosis. So, and a different kind. So because autism spectrum, it's not exactly a mental disorder. So there are different kind of so sometimes it's combined. So it says, it's not because it's much more concerning the problems with communications.

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but most of the population really thinks that it is just a mental health problem. So it's different. But sometimes it's a to put together. And of course, the problem of the diagnosis early diagnosis is one of the key issues

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and the increasing of the number could be. Explain first of all, that the better diagnosis which we have now than it was in the past.

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so

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I'm sorry. yeah.

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So the our research question, where what kind types of the social support for children with mental disorders and autism provide in in Russia, and what approaches to social inclusion are development and kind of situation, and also the role of individuals in the process of social support and and process. Social inclusion

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in the main research messes. where expert interview focus, group this parents with children and young people with mental and autism disorders, and also interview with parents of nomatypical children.

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so We actually have some theoretical background, and we supported the social integration of social inclusion is a process aimed at so to move an existing barrier like stigmatization, discrimination, smooth and out, negative attitudes. To what vulnerable groups that exist in society.

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social inclusion is a process of the proven quality of life and functioning of the person with disabilities through rehabilitation, abilitation, activation, social and psychological support work, and also create a new positive social experience in increasing social participation and integration with other people.

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And also in this slide you can see the one centers with actually this young man with autism said that life is when your life normally.

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So, it's for mind point of view, it's really hard to say. We catch the key point concerning what kind of the life that these people are really.

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 what about we thinking about a lot?

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So a government institution, taking certain measures in the responses and the increasing of number of the people with mental illness.

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but The government institution mainly provides different kind of the medical care, and some professional programs concerning this pedratic so pediatric help

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concerning the social support in the different program of integration. Actually, it's really the duty of non-government organization.

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And, for example, concern in the organization of the social support and social. The social difference of what a social integration program is. Children and young.

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people with mental health. just to wear only a few government organizations like resources center. But the so that means they provide some. for example.

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information. And so, but not providing the service. But concerning the services services for these people it was mainly a government organization. So it was like in this slight nonprofit organization. A number of this nonprofit organization was 86, and cherbital organization was 5.

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So the government sector still provide for these people like, I said, to resources, and also some educational care and medical care.

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So at the present the issues of social inclus of children and young people are predominantly the responsibility of Angel.

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and this is a picture of one of the very famous injuries in St. Peter's book, which is so became famous because the leader of this organization is a director. So as she make some movie about the the people who are leading them.

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So most of the original and local and shows were organized by parents who tried to find the necessary message of social diagnosis, social adaptations, and rehabilitations for the children.

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So it's also a very interesting point. So, as I said, it's not only the angels working on this sphere, but it's in Jos. organizing by parents. So the parents actually take the main responsibility about the future of their children, of course. It's couldn't be understood, but it's not probably the like. real, right? So proper situation.

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And because, of course, the parents providing and organizing different kinds of ensure. Most of them are already lost their own shop, and actually all the life of those parents totally devote to supporting the children, and to the efforts of to integrate the children for the future.

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future! So for the society and the main concern of this parents when we talk with with his parents and me interview, and what should be with my child when I die.

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So it's really a situation which need which need some creation. state and state and non-state, but system supporting the children and young people with monthly diseases, and also out. Here's Minnesota.

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and this is also the some votes which they will you expect from. And Joe said, all injuries that work in the some aid of disability are mostly created, but people who live in it well, that is, everyone who walks in this sector. They are all parents.

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for example, it's impossible to be a good specialist in this field field if you walk With children and do not get involved emotionally.

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So the situation this situation demonstrate, of course, social activism.

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but, on the other hand, it connects with the problem of the lark resources, including professional personal, professional rehabilitation and inclusions program. So of course, we could understand that when the parents provide and organize this internal provide services, of course they are involved emotionally. Of course, they try to do the best.

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but most of them are not professional, so most of them are not really have enough information concerning the best practice of the social immigration and social inclusion. And so so they try to do best. But of course they have not enough resources for do that.

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and at the same time. So that is, sometimes we have situation, this very passive position of a significant part of the family, with children with mental disorders

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especially it's about the small village and small town, because, of course, the Saint FET is Belcom most, because the biggest cities they have. another many different kind of the opportunity to integrate those people, to provide Rehabilitation, and so on. But in the smaller countries so!

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There there is not so many resources, and very often the family. Just okay. So

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we have the children with with mental problems or visualities. And so we try to care about

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inside inside family and not

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just try to integrate in the society.

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So of course, it's really the to that should be changed.

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So concerning the main problems of ensure that our expert said that, of course. First of all, it limited financial resources

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because Ngo have not supported Have not, like a permanent supported from the Government for providing the service. They try to find these resources. Sometimes they try to get some grants federal grants or local grounds to provide. But the problem of the nation resources. It's always the issues.

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And in this point it's interesting also to see it because that people is mentally mental problems. They have like double discriminations, because the first is people with disability normally discriminate, but all among the community people with disability. The people with mental disability are also discriminated, and we can see this, for example, when different kind of applications for for

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when different in job submit to get some funding.

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it's more often they find in go. For example, the people with like this Called nomatypical people. So without mental problems, because it's a there is some steroid types that it could be but integrated, and so on. So on.

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So it also supports that the financial. So it financial resources is the big issues.

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The next point, of course, is the lack of the human resources I already mentioned about this, because it's not only that the parents are not really a professional and not uniform, but also in the social workers and the health care professionals.

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They are not special programmes which educate people. How which educate concerning the program of social integration, social inclusion, children with mental disability and children with autism and disorder.

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So it just started. And sometimes, as I try to catch the best practice from some Europeans countries. For, for example, in Great Britain there's really good examples and adapt to the situation, but the like, it's not really like supported, and a program which to to say realized. on the everyday best.

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and also in as a point, is about the cultural organization. And it's also connected to, as I said that most of this angel are recognized. It was the parents

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and Of course, parents. The very emotional including but there are not many of them and not good managers. It's not only professionals concerning the care about people, children with mental health, and artists, but they are also not really a good manager, and also

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a huge number of the questions concerning with the room, special rooms, space, and so on, and so on, are also the big issues.

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And of course it's necessary. But at least all experts said I, would not really

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good partnership with different kinds of institutions. It mean with, for example, a health care institution, this educational institution.

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And of course it's connected point, because it's also a point of the management to good management. But it also about point about the vicious and willing of the government organization go and to establish the partnership with his non-government organizations.

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So, and also there is some internal barrier for social integration, specialists working with children and adults, adolescents with mental disability and and autism disorder

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did not receive specialized qualifications.

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There is lack of evidence-based practice there. As I said already, is a huge discrimination of this group of the children, and also organizations barriers. So because at the beginning I said that the number of the children with diagnosis, different kind of mental disorders, and and in prison.

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Their personal orientated problems that meet and needs of each interval are not really good realized when the number of the specialist and number of the potential clients children with the problems are really really huge. We have a huge gap

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and external barrier. It's also low awareness of both parents and society. But problems that need children with mental disorders and autism spectrum disorders, problems still, problem of diagnosis. As I said, of course, the situation changed in the better way, but still early diagnosis, especially in the rural area. It's a huge problem.

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and, as I said, there is a lack of the state program, significant regional difference.

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insufficient level of include the inclusive environment, the problem of the development, inclusive education.

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And also there is not really interaction between health care, education, social social social care system.

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and of course, poor support for adults with mental health and autism, spectrum disasters.

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So who, to the conclusions I have to say that the last few is, of course, the situation concerning the attitude of society to the people and the children, particularly with mental health. Well, our geism is changing.

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but the still there is not really a general system, social support system for these children, and this system only in the process of the making and development.

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And of course, it's necessary to develop the mechanism of interaction between state a government and non-government organization because effective program could be realized only all such kind of the partnership

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and the

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they are very separate, and they really make a great job. But it is not enough to change the situation.

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So thank you very much for your attention.

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Thank you.

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Okay.

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yes.

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The last speaker is online.

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Tracey LaPierre: Stop sharing.

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Tracey LaPierre: Yeah, the controls aren't coming up on our end. Okay?

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All right. It's all yours, Tracy.

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Tracey LaPierre: it's 3 30 in the morning here in Kansas, and I am going to

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Tracey LaPierre: be reading a lot more than I normally would, just because I'm pretty tired, and I don't trust myself not to go off

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Tracey LaPierre: on different tangents and be coherent enough. I'm also gonna go quickly because I want to make sure that we have time for discussion.

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Tracey LaPierre: Hi, I'm Tracy Lapier, associate professor sociology at the University of Kansas in the United States. Today I want to share with you my research on reproductive decision making among women with disabilities with a focus on hegemonic ideologies of motherhood as a barrier to fertility.

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Tracey LaPierre: Jean Hall and Mary Zimmerman are my co- investigators on this project.

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Tracey LaPierre: The institution of motherhood is comprised of a collection of culturally determined expectations that prescribe who should be a mother, and how mothering should be performed. while motherhood, as a cultural construct varies with time and place. It is often slow to respond to changing conditions and competing. Cultural scripts can be at play at the same time.

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Tracey LaPierre: hegemonic ideologies of motherhood refer to the dominant beliefs, norms and expectations, expectations surrounding the role and responsibilities of brothers.

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Tracey LaPierre: Patriarchal motherhood promotes a natural essential and idealized view of motherhood that depicts the role of mother as innate, inherently feminine, and the ultimate source of joy and fulfillment, making it an unquestionable goal of every woman.

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Tracey LaPierre: The ideology of intensive mothering reifies the performance of motherhood is all encompassing, physically, mentally, and emotionally child-focused, and therefore selfless, expert, guided and expensive

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Tracey LaPierre: in scientific motherhood. Authoritative knowledge about mothering rests with health experts and scientists. Mothers are responsible for avoiding risk and producing normal children, so they should defer to the authority of medical experts.

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Tracey LaPierre: Neoliberal ideas about individual responsibility and self-sufficiency also shape contemporary views about who is a good mother.

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Tracey LaPierre: Despite the existence of alternative discourses, the pervasiveness of these hegemonic ideologies necessitates that even those who do not subscribe to them must contend with them.

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Tracey LaPierre: Hegemonic ideologies of motherhood represent a nexus of power, relations with sexism, ableism and classism being particularly salient collectively, these ideologies are at the heart of the devaluation of certain groups of mothers and the veneration of others

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Tracey LaPierre: in general, women with disability regard the rewards and importance of motherhood just as highly as women without disability do.

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Tracey LaPierre: Despite similar desires for a child, women with disability are less likely to intend to have a child, and less certain about their ability to realize these intentions.

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Tracey LaPierre: Differences in the ability to realize desired fertility denotes reproductive inequalities.

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Tracey LaPierre: Mit ctl.

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Tracey LaPierre: The social model of disability, argues that reproductive inequalities arise from the environmental and social barriers imposed by society

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Tracey LaPierre: this paper considers the role of hegemonic ideologies of motherhood as a barrier to fertility and motherhood. For women with disability.

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Tracey LaPierre: Data come from 22 women with disabilities who participated in one of 4 focus groups and were recruited proposively from a database of medical center. Patients.

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Tracey LaPierre: Participants were asked in a small group setting to describe their pregnancy, desires and decisions and self-identify the factors that influence them, including both barriers and facilitators.

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Tracey LaPierre: Focus groups lasted one and a half to 2 h. Participants were female ages 24 to 43, with a range of impairments that influence their reproductive choices.

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Tracey LaPierre: We intentionally recruited and combined women with different types of impairment in these focus groups to elicit similarities and differences across types of impairment.

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Tracey LaPierre: In total, 5 participants had comorbid chronic, physical and mental illnesses. 4 participants lived with chronic mental illness, and 13 participants had a chronic physical illness or disability.

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Tracey LaPierre: The sample was racially diverse. Approximately half of the participants were African, American, Hispanic or Asian, and half were Don Hispanic white

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Tracey LaPierre: participants reflected a range of income and education levels.

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Tracey LaPierre: This study incorporates unheard voices in the discourse on reproduction and motherhood. Childless women with disabilities who are not pursuing motherhood are often overlooked in this research, and their inclusion provided significant insight into the power of hegemonic ideologies to not just shame and stigmatize, but also to limit reproductive agency.

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Tracey LaPierre: Our sample included 10 women who experienced a pregnancy or had biological children and 12 women who had neither

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Tracey LaPierre: the study adopted an intra-categorical intersectional critical disability framework. What this means is that we examined the intersection of gender and disability in the context of of decisions about motherhood, analyzing similarities and differences across different types of impairment and allowing other axes of difference to emerge, is important within group differences.

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Tracey LaPierre: Data analysis was an iterative process, starting with inductive, open coding codes were aggregated into broader themes, and the data further analyzed to identify linkages across themes, and how multiple dimensions of identity intersect and interact within the data.

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Tracey LaPierre: A key finding based on the experiences of the women in our study was the appropriation of oppression via hegemonic ideologies of motherhood that varied, based on intersectional social locations and intercategorical differences in impairment.

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Tracey LaPierre: In this presentation I'm going to focus on how hegemonic ideologies of motherhood acted as a barrier to fertility and motherhood.

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Tracey LaPierre: The ideology of intensive mothering asserts that mothers are ultimately responsible for the care and well being of their children, and they need to consult experts on the best way to do this. These expectations mutually reinforce scientific motherhood that affords medical experts a central role as gatekeepers to biological motherhood.

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Tracey LaPierre: A central component of scientific motherhood is what Frederick refers to as the normalcy project which demands women operate as perfectly normal reproducers and produce perfectly normal children.

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Tracey LaPierre: Women with disability are often already under the medical gaze, due to their underlying health conditions, giving medical experts access and authority as gatekeepers in a way that able-bodied women are less likely to experience.

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Tracey LaPierre: Women with heritable conditions were the most stigmatized and the least likely to be encouraged to have children, at least biologically.

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Tracey LaPierre: having biological children when you risk passing on that condition, is judged harshly by others, including health care, providers, and other women with disabilities.

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Tracey LaPierre: These negative judgments seem to center around conditions that involve significant pain, fatigue, or mental illness, and did not extend to women with mobility, impairments, or chronic health conditions that did not involve these qualities.

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Tracey LaPierre: Melissa, a 35 year old, participant with multiple chronic physical health conditions, said I struggled with my health so much, and I didn't want to pass these on. She recounts telling a friend when she was in college. Don't ever let me have kids.

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Tracey LaPierre: She felt a strong desire to be a mother, but did not want to pass on any of her conditions.

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Tracey LaPierre: The evaluation of disability as incompatible with biological motherhood was not just reserved for conditions with known genetic markers and inheritance patterns, but also included impairments that were associated with genetic risks or genetic uncertainty.

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Tracey LaPierre: even though genetic markers of mental illness have not not been identified. Fear of transmitting mental illness significantly curtailed intentions to have biological children for some women.

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Tracey LaPierre: Richelle, a 32 year old, participant with chronic mental illness said I couldn't do that. I couldn't. Even if it's just 10%, even if it's 5. I don't want to hurt someone like that, and I may make an excuse that you know I could adopt, even though I couldn't, because, you know, I wouldn't be approved.

386
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Tracey LaPierre: for many women in our study medical authorities played an important role in shaping decisions about whether to become a mother. Women, warned of ambiguously high risks, frequently abandoned the pursuit of pregnancy altogether, or followed all the medical experts advice and waited for approval. Before attempting pregnancy.

387
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Tracey LaPierre: Claire described. I talked to a lot of different doctors. The Ob. Sent me to a high risk ob, and I guess there's not a lot known about what I have. I mean, there's some known about it, but there's not a ton of pregnancies. They were telling me not to absolutely do not get pregnant. It would not be good for anybody.

388
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Tracey LaPierre: Claire abandoned her pursuit of pregnancy, but was fortunate enough to have the financial resources to pursue surrogacy, and as 2 children.

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Tracey LaPierre: in contrast, Maria shared, I talked to my doctor and told him if it was safe for me to get pregnant that I really wanted to. He's like, well, we need to get your illness under control

390
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Tracey LaPierre: at the time of the focus group. It had been more than a year, and Maria was still waiting for her doctor to give her the green light to try and get pregnant.

391
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Tracey LaPierre: This level of scrutiny and high standard suggests women with disability needed to prove their physical and mental fitness for pregnancy in ways that women without disabilities are not held accountable to and demonstrate the significant role of health care providers as fertility gatekeepers and key mediators of scientific motherhood. In the normalcy project.

392
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Tracey LaPierre: when aspects of impairment interfere with the performance of motherhood in normative ways. Women with disability often choose to forego the pursuit of motherhood, and sometimes even relationships.

393
01:05:36.130 --> 01:05:52.380
Tracey LaPierre: Women with disability in our study that chose not to become. Others often described how they did not meet idealized standards of a good mother, while women who had children often communicated how they were able to live up to these ideals or express self blame and shame at their perceived failures.

394
01:05:52.430 --> 01:06:02.180
Tracey LaPierre: Only a few offered counter narratives. An interesting observation was that some women started out by saying they didn't want kids framing it as a personal lifestyle choice.

395
01:06:02.230 --> 01:06:09.769
Tracey LaPierre: But through the course of the discussion revealed that they didn't want kids because they couldn't see themselves as being able to be a good mother.

396
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Tracey LaPierre: When these women thought about themselves and their impairments. They did not just see how they are in the moment, but what to expect in the future. Women, with progressive or fluctuating impairments, were the most pessimistic about their ability to be a mother.

397
01:06:25.690 --> 01:06:40.130
Tracey LaPierre: Emily anticipates significant impairments related to her condition over time that will require increasing support. She was adamant about not being a burden to others, and believed that if she had kids they would end up having to care for her, ruining their childhood.

398
01:06:40.250 --> 01:06:44.579
Tracey LaPierre: for her needing care was incompatible with being nurturing and a caregiver.

399
01:06:44.640 --> 01:07:00.010
Tracey LaPierre: The child focused selfless role of mothers in hegemonic ideologies of motherhood does not leave room for her to have any needs of her own, and contributes to the stigmatization of women with disability who receive care from their child or need to focus on their own health needs.

400
01:07:00.080 --> 01:07:03.530
Tracey LaPierre: As a result, Emily had never been in a relationship.

401
01:07:03.560 --> 01:07:17.480
Tracey LaPierre: She recounted a conversation she had with her dad. And he's like, you know. I think you're better than this disease like you deserve someone, and I'm like, I don't think I do. Who would want to be in this mess just even approaching that subject would be difficult.

402
01:07:17.510 --> 01:07:32.570
Tracey LaPierre: She fears rejection because of her impairment, and related inability to express her femininity according to a gendered social script that equates womanhood with childbearing and caregiving, and doesn't know when or how to bring that up with a potential romantic partner.

403
01:07:33.010 --> 01:07:45.230
Tracey LaPierre: Internalized characterizations of mothers is selfless and need to take care of oneself, and failure to comply with the motherhood mandate left some women labeling themselves as selfish, Corinne explained.

404
01:07:45.250 --> 01:07:58.389
Tracey LaPierre: I was diagnosed with major depression and anxiety. So that's kind of what I was thinking about. Could I handle having another human being to take care of when I have to take care of myself as well. So maybe it's selfish, but I chose not to have kids.

405
01:08:00.300 --> 01:08:22.980
Tracey LaPierre: Nicole's condition involves fluctuating levels of pain and fatigue, so how she will feel on any given day is mostly unpredictable. She describes I can barely get out of bed some days. My mom was a good mom did step with us all the time but me. I don't personally feel that it would be good for me to be a mom and be in bed all the time, so as of now. I just don't see it as realistic. For Nicole, being a good mom

406
01:08:23.500 --> 01:08:32.259
Tracey LaPierre: is a mom that does things with her kids. She can't consistently perform mothering in that intensive and involved way. So she doesn't think she should be a mom.

407
01:08:34.510 --> 01:08:57.290
Tracey LaPierre: The perceived inaccessibility of intensive mothering was further exacerbated by neoliberal expectations for women to be self sufficient caregivers. Sophia really wants kids, but for now she doesn't think it's a good idea, she says, when I feel really sick. I'm like, no like I really can't. I wouldn't be able to take care of a kid. It's only my husband and I, and he has to work. So who would take care of the baby?

408
01:08:57.470 --> 01:09:14.260
Tracey LaPierre: Even when women had supportive social networks that were encouraging them to have a child? Most did not feel they could draw on this network to help them care for a child. Financial limitations, and the stigma of receiving social assistance also contributed to women with disability, feeling unworthy of motherhood.

409
01:09:14.440 --> 01:09:29.189
Tracey LaPierre: Wendy decided against biological motherhood, but admitted that if things were different financially, adoption could be an option. Others mentioned how any child of theirs would be deprived of sports or vacations because so much of their family income was spent on their health needs.

410
01:09:29.730 --> 01:09:41.689
Tracey LaPierre: Alice added the stigmatization she feels as a recipient of public assistance as a factor explaining. People don't really want someone like me to have a baby. I'm on disability.

411
01:09:41.810 --> 01:09:46.200
Tracey LaPierre: If I have a child, that that means they'll have to pay more taxes to cover that child.

412
01:09:46.640 --> 01:09:59.079
Tracey LaPierre: Women with disability are more likely to live in poverty or rely on government assistance than women without disability, placing these women at increased risk of mutually reinforcing biases that limit reproductive agency.

413
01:10:01.110 --> 01:10:18.990
Tracey LaPierre: despite conventional notions that women with disability are exempt from expectations to become a mother due to their disability. Most of the participants reported social pressures or expectations to become a mother, especially when their impairment was less visible and perceived as imposing fewer limitations on their lives

414
01:10:19.290 --> 01:10:28.030
Tracey LaPierre: as an individual with a disability, however, they also had to contend with the biological realities of their impairment and the social realities of their disability.

415
01:10:28.200 --> 01:10:34.930
Tracey LaPierre: The ablest perspective of others made it difficult for them to understand or accept the decision of these women not to have kids

416
01:10:34.980 --> 01:11:02.609
Tracey LaPierre: whenever it was brought up in a focus group. It's stimulated a lot of cross talk where women shouted out responses they had been met with, after trying to explain their challenges, examples included. Oh, that's nothing. You look healthy most of the time, so you'll be able to. And yes, you can. These statements, while often meant to be encouraging, challenge the significance of the barriers these women face minimize their experiences and question the legitimacy of their disability

417
01:11:02.850 --> 01:11:15.089
Tracey LaPierre: as one participant exclaimed, I've really learned to hate the phrase. You can do anything if you put your mind to it. These messages signaled that the only barrier to success, for women with disability was the effort they were willing to commit to it.

418
01:11:15.410 --> 01:11:21.110
Tracey LaPierre: Kim and others felt strongly that individual perseverance was not enough to overcome these obstacles.

419
01:11:21.240 --> 01:11:32.259
Tracey LaPierre: Encouragements were often shallow in that people who spoke them failed, or refused to engage in a dialogue about what pregnancy and motherhood might look like for them, and the challenges that needed to be overcome.

420
01:11:32.270 --> 01:11:49.910
Tracey LaPierre: These types of reactions produced a superficial environment of acceptance and support for women with disability as mothers. and this illusion of inclusion reinforces the status quo where physical and attitude no barriers restrict reproductive freedom and access to motherhood for women with disability

421
01:11:51.990 --> 01:12:09.700
Tracey LaPierre: when viewed as incompatible with idealized notions of motherhood. Some women with disability exclude themselves from motherhood by internalizing and reproducing cultural scripts that oppress them, based on implicit ablest assumptions. This appropriated oppression contributes to stratified reproduction

422
01:12:09.820 --> 01:12:37.730
Tracey LaPierre: an assertion that disability doesn't matter because it shouldn't matter highlights. The ableism embedded in hegemonic ideologies of motherhood and contributes to an environment of disability, evasiveness that perpetuates the systematic marginalization of women with disability by dismissing the need to confront attitudinal and other structural barriers. These findings provide valuable insight into the ways in which women with disabilities are subjugated by the mutually constituted forces of gender and disability

423
01:12:37.760 --> 01:12:43.879
Tracey LaPierre: which are critical to understand and address in order to achieve progress towards full inclusion and equality.

424
01:12:44.210 --> 01:13:01.920
Tracey LaPierre: While focusing on the individual experiences of women with disability at multiple social locations, our study draws attention back to the structural level, and demonstrates how ideologies of motherhood are complicit in stratified reproduction by empowering some women to reproduce and disempowering others.

425
01:13:02.030 --> 01:13:09.420
Tracey LaPierre: This finding broadens our understanding of fertility, barriers to include oppressive hegemonic ideologies of motherhood.

426
01:13:10.680 --> 01:13:11.730
Tracey LaPierre: And these.

427
01:13:11.740 --> 01:13:22.870
Tracey LaPierre: findings kind of contribute to some questions that I have, and thinking about these issues and but that's the end of my presentation. And I'm looking forward to

428
01:13:22.890 --> 01:13:26.409
Tracey LaPierre: hearing questions and being able to have a discussion with everybody.

429
01:13:38.140 --> 01:13:45.169
Thank you for presentation. The or presenter presented the please come to the front

430
01:13:45.610 --> 01:13:46.430
like

431
01:13:57.460 --> 01:13:58.370
this.

432
01:13:58.800 --> 01:13:59.600
Okay.

433
01:14:09.020 --> 01:14:11.430
yeah. The

434
01:14:17.600 --> 01:14:24.659
okay. the we. We go to the the

435
01:14:24.670 --> 01:14:26.779
question and answer.

436
01:14:27.060 --> 01:14:43.489
 are there any questions for the presenter, each present data, or the global questions? General questions? Are there any person who will ask the questions?

437
01:14:47.560 --> 01:14:49.370
A comment? Yeah.

438
01:14:49.600 --> 01:14:51.870
yes. the.

439
01:14:57.280 --> 01:15:10.690
I have a question to Tracy, and it was very interesting to listen to your presentation, and it very much resonated to a research that I also did.

440
01:15:11.720 --> 01:15:30.500
But in in my research I focused on women with disabilities who had children. All of them had children, and I didn't ask the question about the deciding whether to have or not to have children, but all of them had children.

441
01:15:30.920 --> 01:15:49.489
and also in in the research that I included all types of disabilities. But I think you didn't mention intellectual disabilities. That was the case in the research that I did, and what I find out that it's quite often happening that

442
01:15:49.710 --> 01:16:00.939
If a mother, or both parents or father has intellectual disability or psychosocial disability, the child is being removed and placed them in foster care.

443
01:16:01.740 --> 01:16:19.809
So that's my comment. And then I had a question you well, because maybe of that of the time limit. You didn't comment on those who had children and made choice to have children. So that would be interesting to hear.

444
01:16:19.890 --> 01:16:34.070
Tracey LaPierre: Maybe. Yeah. Yeah. I appreciate your comment and your question. We we did not include in a women with intellectual disabilities in this study at the time. there were some

445
01:16:34.470 --> 01:16:54.220
Tracey LaPierre: irb and logistical issues that we were contending with. So we weren't able to include them. but yeah, I wanted to focus on how these were barriers to fertility, and so I didn't bring up in my presentation a lot about the women that had children. The women that had children surprisingly

446
01:16:54.320 --> 01:17:12.600
Tracey LaPierre: a lot of them were unintended pregnancies. a majority of them were actually unintended pregnancies. So there wasn't an actual decision to have a pregnancy, or sometimes they had kids before they were diagnosed with a specific mental illness or disability. They

447
01:17:13.640 --> 01:17:16.059
Tracey LaPierre: I'm trying to think here the

448
01:17:16.200 --> 01:17:37.879
Tracey LaPierre: they did. there were some that did offer counter narratives that we're talking about, you know, So the lived experience of being a mother with a disability often allowed them to kind of overcome these hegemonic ideologies as they were able to draw on their own experience and adopt counter narrative, so that 1 one mother talked about how her

449
01:17:37.970 --> 01:17:45.789
Tracey LaPierre: her children learn compassion because of the care that they're able to provide her her and that they

450
01:17:46.160 --> 01:17:53.620
Tracey LaPierre: are more inclusive and accepting of of people that are with differences than other children might be.

451
01:17:55.210 --> 01:18:00.019
Tracey LaPierre: So I'm trying to think of, if anything else there. There was some women that

452
01:18:00.870 --> 01:18:15.219
Tracey LaPierre: also experienced some mother blame and guilt because there were a couple of women that had heritable conditions that chose to have children, and then passed a disability on to at least one of their children, and they

453
01:18:15.320 --> 01:18:18.950
Tracey LaPierre: expressed a lot of guilt and blame for that.

454
01:18:20.560 --> 01:18:21.220
Tracey LaPierre: Nope.

455
01:18:21.540 --> 01:18:22.460
thank you.

456
01:18:27.210 --> 01:18:27.930
I said.

457
01:18:28.210 --> 01:18:29.410
Thank you.

458
01:18:30.040 --> 01:18:38.180
hello! I'm Chiaki from Japan. I thank you for your presentation. I have a validated question.

459
01:18:38.190 --> 01:18:52.210
post-present data. I'm Japanese, and in Japan until 1,996 people with mental or intellectual diseases was sterilized

460
01:18:52.940 --> 01:19:12.740
at the public expense under the Eugenic Protection law, because of the prejudice that people with disabilities don't want to fall in and don't fall in love, and the social system doesn't assume that people with disabilities deep with their partners.

461
01:19:13.140 --> 01:19:29.969
In some cases people are allowed to live with their partners on the condition that they don't have children, and on the ground that it would be difficult for those around them. If children were born.

462
01:19:29.970 --> 01:19:47.790
In Japan cases was reported just recently, in which an institution or dissident allowed a person to live with partner on the condition of a study sterilization.

463
01:19:48.480 --> 01:19:54.819
Recently it is said that this is self-

464
01:19:54.940 --> 01:19:57.260
of the individual.

465
01:19:57.350 --> 01:20:20.510
Also, this year in Japan I had of a case in which we met a child child guidance Center placed a child to. If an infant home or a baby home because of a person with intellectual disabilities was not, cannot prepare. 24 h! Care for the children!

466
01:20:20.510 --> 01:20:30.550
A child! Sometimes a child actually end up in foster care or adoption in in Japan, too.

467
01:20:30.720 --> 01:20:35.620
I think the term best interest of the child

468
01:20:35.630 --> 01:20:45.119
seems to justify these things. I think so. What are you? What are you think about it.

469
01:20:48.040 --> 01:20:54.050
Tracey LaPierre: Thank you for sharing those insights on your experiences in Japan. I think

470
01:20:54.180 --> 01:21:07.139
Tracey LaPierre: what what we've seen. I mentioned how the women that we recruited in our study were from a a database of medical patients. So they were all people that were had diagnoses and were under the medical gaze. And I think that

471
01:21:07.230 --> 01:21:36.299
Tracey LaPierre: there's a lot more involvement of other people in, and assumptions about what kind of quality of life a child of theirs would have, or what kind of quality of bothering that they would give? that aren't based on actual fact or observation, but just assumptions about disability. And you could imagine there are a lot of people out there without disability that don't take care of their children or you know, have poor parenting practices, or are not intensive or involved mothers, but

472
01:21:36.380 --> 01:21:46.350
Tracey LaPierre: people they're not under surveillance in the same way. and so people are not giving necessarily giving that expectation.

473
01:21:46.710 --> 01:21:57.529
Tracey LaPierre: Sorry, I guess that it's it's almost 4 in the morning now, and I'm not being very coherent. So I apologize. but I I do think that there's assumptions being made about the

474
01:21:57.550 --> 01:22:08.429
Tracey LaPierre: of people with disability to parent. And I think it comes across in the advice that the doctors were giving and even when women with disability were willing to accept.

475
01:22:08.460 --> 01:22:23.150
Tracey LaPierre: You know, different standards of mothering that sometimes they couldn't find medical practitioners to work with them or to support them. There were some women in the in the study that had hysterectomies. And were

476
01:22:23.470 --> 01:22:33.790
Tracey LaPierre: explain. That was, you know, in consultation with their doctors. That that was the best thing for them. And they they also kind of talked about it as their choice.

477
01:22:33.820 --> 01:22:37.080
Tracey LaPierre: But then you wonder how much of that was.

478
01:22:37.290 --> 01:22:49.869
Tracey LaPierre: you know, their choice initially versus the different messages that they're being given about them and their ability to be a mother influencing and shaping those choices.

479
01:22:50.860 --> 01:22:54.150
jorge: I think that the ideologies

480
01:22:54.250 --> 01:23:11.709
jorge: of disabled

481
01:23:12.020 --> 01:23:17.710
jorge: the the they see one, the prevalent ideologies.

482
01:23:17.770 --> 01:23:36.330
jorge: a make that always there is a barrier to full development of that. You say normal life of people with some problems

483
01:23:37.160 --> 01:23:46.140
jorge: of mentally. It's all disabled in one or other way.

484
01:23:54.180 --> 01:24:00.590
Thank you for comment, George. The we next

485
01:24:00.770 --> 01:24:01.620
question

486
01:24:02.600 --> 01:24:28.840
you think, actually, I have the questions to the first speaker, one just to clarify the numbers because you mentioned that the 28 institution and 6,000 residents? Yeah, it's mean only with disability. It's oh, it's also include to like elderly on the disability. Yeah? And the second questions, if I understood right.

487
01:24:28.840 --> 01:24:51.280
see a pictures of this newspaper. So the community not really very welcome these day institutions. So in this situation, what kind of the measures? So the program may be realized. So how we try to change the attitudes and the public opinion concerning this utilization. Thank you.

488
01:24:53.870 --> 01:25:06.610
Thank you for the question. So yes, it's only homes for persons with disabilities that the institutionalization doesn't cover elderly care facilities.

489
01:25:06.770 --> 01:25:09.480
so that

490
01:25:10.240 --> 01:25:14.060
different strategies, but not super creative.

491
01:25:14.270 --> 01:25:36.320
There are some campaigns like, Open your hearts, accept people with disabilities, and so on. Then in some cases there are negotiations. When the first protest took place, even the Minister of Social Affairs, he went to the place, and he met those angry protesters.

492
01:25:36.830 --> 01:25:50.880
and in that case the ministry agreed to build one house instead of 2. So that was like done down shifting of what was initially planned.

493
01:25:50.970 --> 01:25:57.450
In the one case there was their location changed.

494
01:25:58.810 --> 01:26:14.610
Then, also there were some also negotiations with the community, and some conditions were improved, like some sports. place or park was reconstructed, or the

495
01:26:14.940 --> 01:26:32.879
pavements Streets more like lights! So it was like the women's situation. But I would would like to add that during our research we visited these communities where people with disabilities already live

496
01:26:33.520 --> 01:26:54.249
and there is no big deal. There are no conflicts, nothing is happening. They are like normal, normal, regular members of the community and no protests, no conflicts. Actually, it is very quiet. And they got well. We were expecting more interactions

497
01:26:54.370 --> 01:27:09.690
on daily basis casual basis. But it didn't happen. Actually. the web a bit like. So in in some cases it was like separated people with disabilities lived their lives and community lived their lives as well.

498
01:27:09.780 --> 01:27:13.199
They met more often during city events.

499
01:27:13.650 --> 01:27:25.519
That was, we noticed that there is another like interesting aspect how people without disabilities and with disabilities interact during city events, festive city events.

500
01:27:25.740 --> 01:27:41.959
So actually, when the house is built and people move into that house, everything goes smooth. There are no incidents, no cases of aggression. People with disabilities don't run naked as it was scared and expected.

501
01:27:41.990 --> 01:27:46.079
So it's just a regular process of inclusion.

502
01:27:51.170 --> 01:28:02.759
Thank you. the to the online presenter. 3 online present the have creations first agata.

503
01:28:03.420 --> 01:28:07.650
Agata Krasowska: Hello! I have a question to Tracy

504
01:28:07.720 --> 01:28:22.039
Agata Krasowska: and thank you for very inspiring presentation. And I think, can you explain motherhood as a total institution? The Government's total institution? Because, mother

505
01:28:22.040 --> 01:28:38.719
Agata Krasowska: what is institution organized to protect community before disabled people, and disability in general. therefore, a disabled mother should withdraw from the society as a mother.

506
01:28:39.010 --> 01:28:44.110
Agata Krasowska: And can you think about motherhood as total institution.

507
01:28:46.470 --> 01:28:48.040
Tracey LaPierre: Yeah.

508
01:28:48.770 --> 01:28:50.600
Tracey LaPierre: I'm thinking, like the

509
01:28:52.540 --> 01:28:56.350
Tracey LaPierre: in terms of withdrawing from motherhood. I'm not. I'm not

510
01:28:56.430 --> 01:29:00.420
Tracey LaPierre: exactly catching

511
01:29:01.790 --> 01:29:08.040
Tracey LaPierre: I know that a lot of the ideologies around that basic, you know, are implicitly saying that women

512
01:29:08.110 --> 01:29:13.960
Tracey LaPierre: that well, they say all women, all women, should should be mothers, but then they're

513
01:29:14.470 --> 01:29:37.059
Tracey LaPierre: only some people that are really. They want to be mothers, and women with disabilities are often in that group of people that they that society doesn't feel should be reproducers, either because of their risk of passing on a disability or their ability to be a productive and good mother in society.

514
01:29:38.140 --> 01:29:39.509
Tracey LaPierre: But I I can't.

515
01:29:40.520 --> 01:29:43.040
Tracey LaPierre: Maybe if you ask the question a little bit differently.

516
01:29:46.560 --> 01:29:50.420
Thank you. next is Cedar.

517
01:29:54.120 --> 01:29:56.099
Please ask questions.

518
01:29:56.540 --> 01:29:57.550
Kjeld Høgsbro: Yeah.

519
01:29:57.600 --> 01:30:06.000
Kjeld Høgsbro: Well, thank you for some really good presentations.

520
01:30:06.030 --> 01:30:09.150
Kjeld Høgsbro: It was interesting and and thoughtful.

521
01:30:09.450 --> 01:30:21.950
Kjeld Høgsbro: for all 4 presentations rises the question of the different, the role of the different actors within this field.

522
01:30:22.250 --> 01:30:33.090
Kjeld Høgsbro: to George it was a kind of ideology for Tracy, mostly focus on the medical profession.

523
01:30:33.340 --> 01:30:38.590
Kjeld Høgsbro: and not only the medical profession as a most important actor.

524
01:30:38.640 --> 01:30:57.290
Kjeld Høgsbro: but also the medical profession as it skipping the social models and focusing like they could make a deduction directly from impairment to the ability of being a mother.

525
01:30:57.570 --> 01:31:22.379
Kjeld Høgsbro: And then there was a question of civil society and how they received people with mental illness, and if it was possible in this day, instead of to to to make it process where civil society was much more involved in it.

526
01:31:22.520 --> 01:31:36.199
Kjeld Høgsbro: And and then there was, the Russian case where the the focus on the the organization of people for autism

527
01:31:36.750 --> 01:31:51.929
Kjeld Høgsbro: and the the of the organizational experience and organizational culture. So that is quite different actors which you you focus on

528
01:31:52.290 --> 01:31:57.610
Kjeld Høgsbro: and it still it it it comes back to

529
01:31:57.690 --> 01:32:02.790
Kjeld Høgsbro: to, how do we? How do we cope with stigma?

530
01:32:03.120 --> 01:32:07.290
Kjeld Høgsbro:  There's a lot of

531
01:32:07.460 --> 01:32:15.740
Kjeld Høgsbro: and is it dependent on common discourses and the state regulation

532
01:32:15.790 --> 01:32:19.100
Kjeld Høgsbro: and the professionals.

533
01:32:19.130 --> 01:32:30.919
Kjeld Høgsbro: It just mirror some common discourses which we have to change some way or the other to change the attitudes

534
01:32:30.940 --> 01:32:40.070
Kjeld Høgsbro: of the Civil society and the intervention of from State professions, and so on.

535
01:32:48.270 --> 01:32:50.990
Kjeld Høgsbro: Well, that was my question.

536
01:32:51.580 --> 01:32:55.360
Kjeld Høgsbro:  if you can find middle ground

537
01:32:55.370 --> 01:33:00.280
Kjeld Høgsbro: between the full presentations, and say.

538
01:33:00.610 --> 01:33:04.599
Kjeld Høgsbro: where. what do we actually have to do.

539
01:33:05.640 --> 01:33:07.250
Kjeld Høgsbro: and how do we do it

540
01:33:07.460 --> 01:33:12.689
Kjeld Høgsbro: to change the the widespread discourses of

541
01:33:12.710 --> 01:33:15.230
Kjeld Høgsbro: of this kind of

542
01:33:15.670 --> 01:33:17.309
Kjeld Høgsbro: disability.

543
01:33:19.020 --> 01:33:23.959
Thank you. I will maybe try to make some considerations.

544
01:33:24.040 --> 01:33:31.240
because in a mental health care, in disability, stigma is still very prevalent.

545
01:33:31.600 --> 01:33:39.229
It's less, maybe in in the more developed Western democracies.

546
01:33:39.350 --> 01:33:49.430
Lithuania, I consider it a like newly emerged democracy which is on its heart pathway towards it.

547
01:33:50.120 --> 01:33:51.400
I think.

548
01:33:51.440 --> 01:33:59.320
Well, professionals need to be professional, they should do what they are doing, they should do. They work well.

549
01:33:59.540 --> 01:34:07.490
And yeah, address these tissues and talk to to

550
01:34:08.020 --> 01:34:28.449
to neighbors, to a civil society. To develop good practices, to present them. And of course, what I would like, and in this thinking of my research they don't shouldn't be I don't know. Scared, stopped by By the protests

551
01:34:28.950 --> 01:34:35.209
I once attended one, the Protest meeting as a researcher, of course.

552
01:34:35.830 --> 01:34:38.720
and it was very unpleasant.

553
01:34:40.050 --> 01:34:43.250
they were well.

554
01:34:44.160 --> 01:35:01.530
terminology used. I I would not like to repeat here also. what is to be noticed, that this rhetoric, stigmatizing rhetorics, it sometimes obtains

555
01:35:01.560 --> 01:35:05.700
manipulative character. Like the

556
01:35:06.210 --> 01:35:18.969
I pick some terminology from them. Crpd. The Convention on the Rights of Person with disabilities, and like reverse it. And

557
01:35:19.110 --> 01:35:23.440
I speak about community living from their own perspective.

558
01:35:24.200 --> 01:35:41.919
But still, although I saw very strong  obstacles and people very strongly against the inclusion of persons with disabilities. I knew that there are good examples as well.

559
01:35:42.070 --> 01:35:50.289
and that it takes time. It takes efforts, it takes professionalism.

560
01:35:50.390 --> 01:36:16.029
And then things are changing, but political will is very important. This level of local authorities is very important also, what is to be noticed in in our research that in some local governments, where the major is younger, more open-minded, more than thinking, the process is more smooth and and easy.

561
01:36:16.030 --> 01:36:30.710
whereas where some conservative, not in terms of ideology, but more like old-fashioned thinking. To them things are more more complicated. So I'm rather optimistic. I think

562
01:36:31.230 --> 01:36:36.060
I don't know if that answered your question just shared some considerations.

563
01:36:37.630 --> 01:36:45.600
Ok, I also try to contribute to this discussion because it's really good questions.

564
01:36:45.780 --> 01:37:05.050
And of course, as I said, that the one of the key conditions is cooperation and interaction between angel and government. So State count, at least because the State should provide some fines for this program. And so.

565
01:37:05.100 --> 01:37:11.770
but in our research, for example, concerning the inclusive education.

566
01:37:11.820 --> 01:37:15.759
children with a different kind of disability.

567
01:37:15.830 --> 01:37:43.629
we realized that the main barrier, it's the parents of of no typical children because they are not really would like that. The to another children with some disability. Will that the same? School, for example? At will. But inclusive education does not mean that they are just sitting on the one class, but it's of course it's a general space.

568
01:37:43.630 --> 01:37:55.150
So it should be some programs how to say attendant to change in the public opinion concerning this.

569
01:37:55.150 --> 01:38:18.530
and also providing maybe some information that it will be not how to say, to make the the the position of their children educational children was so, or it will be not really the problem in many case why I'm asking about the community, because, of course, that kind of the barrier from community. It's very open.

570
01:38:18.710 --> 01:38:34.830
Another point. I think it's very important that it's necessary to change the system as a method of providing social support. Because one of my main era researcher, it's concerning the social worker, social policy.

571
01:38:34.850 --> 01:38:48.890
And there's still a lot of old. Masses of social work in providing service, but not really empowering clients, and to foreign parents to

572
01:38:48.890 --> 01:39:06.400
try to be integrate and in in group, because many of them are just how to say, Try to wait in some services, but not really would like to make some contribution to change a situation.

573
01:39:06.580 --> 01:39:08.350
So

574
01:39:08.430 --> 01:39:26.860
the my point that it is not only I, but but of course it should be some stakeholders and main actors like, and Joe's State government, state organizations. But it really should also focus on the change of public opinion and public editors to this point.

575
01:39:27.080 --> 01:39:28.049
Thank you.

576
01:39:29.910 --> 01:39:41.000
Thank you. One more online present participant. Have the question.

577
01:39:41.250 --> 01:39:43.099
please ask a question.

578
01:39:46.350 --> 01:39:48.420
Mikael Kivelä: Thank you so much. I

579
01:39:48.469 --> 01:39:54.050
Mikael Kivelä: also posted the question to the chat. If if you rather read it, then

580
01:39:54.170 --> 01:39:55.889
Mikael Kivelä: you may speak it allowed.

581
01:39:55.910 --> 01:39:59.440
But thank you so much for an excellent session. My question

582
01:39:59.490 --> 01:40:12.519
Mikael Kivelä: is a global one to all the presenters, and it's a rather black and white one. But I'm trying to understand the justifications of this radically unequal treatment which I think you all described.

583
01:40:12.639 --> 01:40:21.209
Mikael Kivelä: So do you see that the persons you talked about are considered more, for example, ill or disabled than human.

584
01:40:22.540 --> 01:40:25.290
Mikael Kivelä: Because even

585
01:40:25.740 --> 01:40:27.290
Mikael Kivelä: yeah, that's

586
01:40:27.709 --> 01:40:28.950
Mikael Kivelä: and that's it.

587
01:40:38.840 --> 01:40:41.539
Anyone can ask.

588
01:40:44.100 --> 01:40:47.039
Thank you for a provocative question.

589
01:40:47.309 --> 01:41:07.139
The first idea that pops in my head is that. yeah, actually in. I also did a research. But that was almost 10 years ago, when with a colleague, we did a research, and we wrote an article, and we used that precisely term.

590
01:41:07.610 --> 01:41:10.719
The article was about

591
01:41:11.230 --> 01:41:35.059
sexual and reproductive rights of persons with the intellectual and psychosocial disability. So the title, if I remember correctly, was about sexuality of dehumanized people. So what we found that the discourse around them. But yeah, that paper was published in 2,015. So the research was done 10 years ago.

592
01:41:35.309 --> 01:41:46.459
I'm not sure if it changed it so I need to think of it. I cannot like improvise, but some some aspects of

593
01:41:46.540 --> 01:41:53.929
the humanizing approaches. I would say they are in place if that answered your question.

594
01:41:58.940 --> 01:42:03.670
Tracey LaPierre: just make it a small comment. As I was thinking about that question, I think

595
01:42:04.250 --> 01:42:23.160
Tracey LaPierre: if I reframe it a little bit in terms of the research that I was doing on that was really looking at these ideologies of motherhood, that threaded femininity, and and what it means to be a woman if I kind of rephrase it and think about it. Are the people in my study considered more ill or disabled than female?

596
01:42:23.330 --> 01:42:52.899
Tracey LaPierre: you know, I think, given those those gendered expressions of personhood, then I would say, that's definitely the case. They were not the, and that these women were actually viewing themselves this way as not as less a feminine and inability to even without fulfilling that role of motherhood that you know, I didn't get into this, but some of the women were talking about how they didn't know what they were going to do with their lives. They didn't know how to relate to other women.

597
01:42:52.900 --> 01:43:00.780
Tracey LaPierre: They didn't know what kind of purpose they would have, and they felt devalued by others by not having being able to take on that role?

598
01:43:00.810 --> 01:43:02.620
Tracey LaPierre: so I do think it in

599
01:43:02.670 --> 01:43:06.710
Tracey LaPierre: from in my research that that was definitely the case.

600
01:43:19.020 --> 01:43:23.850
Anyone to ask that questions. Are you any questions

601
01:43:29.820 --> 01:43:30.510
I was.

602
01:43:30.670 --> 01:43:37.910
Tracey LaPierre: I'm going to add also, for the previous question killed, I think, had about asking us. You know.

603
01:43:38.050 --> 01:43:41.689
Tracey LaPierre: What? Where? Where should where should we be?

604
01:43:41.790 --> 01:43:51.129
Tracey LaPierre: looking at this middle ground, or whatever? And and I agree with the the other speaker that was talking about the importance of of public attitudes.

605
01:43:51.210 --> 01:44:20.420
Tracey LaPierre: You know, I think, under underlying a lot of so much of this are still explicit and implicit bias, you know, in in different areas in different ways. Sometimes that differential treatment is very explicit, and other times it's more subtle and but kind of look looking at the ways that the the social attitude surrounding the social inclusion of of persons with differences kind of are perpetuated, and I I think, in my.

606
01:44:20.620 --> 01:44:22.230
Tracey LaPierre: in my study. It was.

607
01:44:22.470 --> 01:44:35.209
Tracey LaPierre: What I thought was interesting was that there was a lot of people that felt they were allies, that they were supportive of people with disabilities being mothers. And you know they're like, of course you can. You can do it.

608
01:44:35.250 --> 01:44:56.379
Tracey LaPierre: But that disability evasiveness was there. when they're just assuming that because they don't have any personal prejudices against an individual in this way, that this, that other aspects of society aren't set up in ways that still make it difficult for them to participate in those particular roles in society. So I think even

609
01:44:56.670 --> 01:45:05.749
Tracey LaPierre: those of us that would say that we were that we are personally inclusive. to not lose sight of the fact that there are other

610
01:45:05.890 --> 01:45:28.190
Tracey LaPierre: people, and there are other institutions and other power dynamics that play that are shaping these individuals lives, and that if we want to be true allies, we're going to listen to them about their experiences and and really try to understand where they are and what they're up against in in. To see some of these areas that that we need to address more thoroughly.

611
01:45:32.420 --> 01:45:36.860
Thank you. Teresi. one more questions.

612
01:45:36.980 --> 01:45:47.730
I have a cast into the professor. Yes, I'm sorry for it. It's kind of specific and small.

613
01:45:47.740 --> 01:45:58.320
And first of all. Thank you for your sharing of Russian situation, and I was curious about those Indians that you mentioned.

614
01:45:59.040 --> 01:46:06.849
You said that those enzymes are mostly created by parents. And I was all curious about

615
01:46:06.970 --> 01:46:09.799
those and deals also include the

616
01:46:10.140 --> 01:46:22.009
a activist who is who are with disabilities because I'm from South Korea, in South Korea and Japan. Also, there are many.

617
01:46:22.150 --> 01:46:25.199
The mental in this movement with

618
01:46:25.500 --> 01:46:32.000
the people, with people, with mental disabilities, are directly participated in those, and

619
01:46:32.220 --> 01:46:46.170
we call it the first-person movement. So I was curious whether those kind of movement is also in Russia, and second, I have a question about their relationship with the government.

620
01:46:46.210 --> 01:46:53.359
It can be the Russian Government or the sanctuary book of the city government. So how is the relationship

621
01:46:53.430 --> 01:47:13.289
of those Ngos and the government, or the medical professionals, for example, in South Korea, medical institutions are quiet, Privatized. So the Ngos and medical institutions are always conflicting, because again, you just want to make patients

622
01:47:13.340 --> 01:47:27.829
leaving leave independently in the community. But the institutions always want them to be hospitalized. So I was curious about the relationship of the Ngos and the government or the medical institutions in Russia.

623
01:47:29.160 --> 01:47:58.240
Okay, thank you for your questions. So concerning the enjoy and concerning the activism of people with disability. It's unfortunately, not really so much. And, as I said, when it's about the children, the parents are very active, but parents mostly of at least in our research when we did this interview. So most of the parents

624
01:47:58.260 --> 01:48:08.140
was not any mental or physical problems. So they really care about their children and try to change the situation.

625
01:48:08.300 --> 01:48:27.770
And concerning the like adult people, especially with mental disability, or, for example, with autism desert, they are not really active, and they are not really in as a like institution who maybe help to organize such kind of the moment.

626
01:48:27.770 --> 01:48:41.829
So it's still in, mostly of of course, it does not mean the situation with the support and the integration of people with disabilities and not changes. But it's still much more

627
01:48:41.980 --> 01:48:47.880
results by by results of the State institution or government institution

628
01:48:48.180 --> 01:48:55.920
concerning the relations with the government

629
01:48:55.930 --> 01:49:15.989
in Russia the Federal Government provide, like legal. So so the main like. For concerning, for example, some special benefits or some special supporting program. And so but mostly the. Of course, they communicate with local government.

630
01:49:16.100 --> 01:49:23.999
and, in fact, without support by local government. They could, they not really can do anything.

631
01:49:24.060 --> 01:49:47.859
And it's also one of the reason why so big difference in different different different system and different region. Because, of course, it's a very the role of local government. It's really very, very huge and the same, if you have like. Very how to say,

632
01:49:48.210 --> 01:50:08.559
government, who really understood the problem, people with disability. And so they tried to support, provide some buildings, provide some funding, and so on. But from another region we have opposite situation, and although, of course, the people in India are very active, try to do, but

633
01:50:08.560 --> 01:50:20.909
with our support they not really could do a lot because the the problems of the money problems of the financial support is one of the big issues.

634
01:50:21.160 --> 01:50:28.190
So, as I said, it's the most relations between local government and this organization.

635
01:50:28.280 --> 01:50:39.020
and another point just towards unfortunately, there are not really a great corporations between our medical and social service organization.

636
01:50:39.110 --> 01:50:52.050
because, of course, especially problem of disability. of course, when we're talking about like social model of disability, of course it's opposed to very strong cooperation medical and social support.

637
01:50:52.130 --> 01:51:03.969
And right now We unfortunately become such a kind of operation. It's very, rather separate. You provide medical service, and we provide social service.

638
01:51:04.560 --> 01:51:14.239
but sometimes the situations to at least start to change, and, as I said it, mostly the results of the and Joe and some like

639
01:51:14.490 --> 01:51:21.319
people who are really activist in the public health here. Thank you for a question.

640
01:51:22.250 --> 01:51:40.779
Thank you. Time is already out now. we finished close the this session. Thank you for participation, the last participant you. But the discussion is very nice, intensive. But then thank you for the

641
01:51:40.950 --> 01:51:45.739
presentation, and thank you for the participation online.

642
01:51:47.000 --> 01:51:49.660
Thank you so much.

643
01:51:49.870 --> 01:51:55.360
Tracey LaPierre: Thank you. Everybody gave me some interesting things to keep thinking about.