What Research and Practitioners say about Parents and Parenting with Disabilities
As part of Speaker Slam®'s Amplifying Voices: Parents with Disabilities showcase, held online on Jun 1, 2022, Marjorie Aunos shared a story.
Transcript
good evening everybody i'm really excited for tonight's conversation we are here to talk about what research um says about parents and parenting with disabilities i was going to say intellectual disability because that's usually um what i say so um but it's not just intellectual disabilities tonight it's really about parents and parenting with all disabilities um i'm very um excited to introduce you four three because i'm including myself so three people who who do research and have been doing research in this field uh for quite some time and um who have been very sort of specific also in how they did research and their results um
have led to painting the image that i think is very um similar to what parents experience so i'm really excited to share that with you all so i will first introduce or not introduce but sort of ask laura pacheco to introduce herself and tell us a little bit about her research so hello everybody good evening good afternoon good morning for maybe some people that will be listening uh later on uh my name is laura pacheco i am originally from montreal quebec and have recently uh made the move to newfoundland and i am an assistant professor in the school of social work at memorial university it's
such a pleasure to be here uh tonight and i look forward to our rich exchanges as well i look forward to to hearing about um the work not only of of all of us that are here today but uh future checks as well so my um research has been primarily with parents that have an intellectual disability so my thesis was on mothers with intellectual disabilities from ethnocultural communities so really exploring what their lived experiences were how their narratives were really influenced by different messages not only in society but also from their cultural community and how this shaped um their life i think the one of
the most important things that came out of this study and i think a lot of the research that's being done is related to resilience so these moms talked about some of the abuse they experienced whether on individual or systemic levels but they also demonstrated incredible resilience and at the center of that was the love that they had for their children no matter where they lived so that was the part of my my beginnings and then you know with some of the the partners that are here tonight uh we've done research um you know looking at assessments and interventions from a critical perspective looking at what
the strengths are but also what some of the gaps are exploring systems capacity so that's research that we did with dr maurice feldman with uh marjorie um and with david mcconnell who is the principal investigator so looking at um what are the needs within our system within the canadian context and how can we build interconnected services for families that are headed by parents with intellectual disabilities and then what we're looking at now is examining court reports so these are court reports um in quebec of parents with an intellectual disability and we looked at um what were some of the conclusions with within these court reports
what was it based on so what was the evidence that judges use in order to make decisions in the lives of these families and as you can imagine intellectual disability and the link with um the them being identified as unfit parents was a prevalent theme and we also looked at the ways in which parents with intellectual disabilities from a critical discourse analysis perspective were constructed so how were what were the you the words that were used to identify them and that to pathologize them um in in the end so that's a quick version of some of the research um that i've been doing with colleagues
with marjorie and with colleagues around the globe as well great thank you so much laura would you like to introduce yourself of course thank you marjorie and hi everyone so my name is kohali i have a phd in community psychology i'm also a psychotherapist and i'm currently working at two universities uh two universities i'm a professor in psychology and mental health and i'm also doing research in another university here in montreal quebec my thesis was about people parents exactly parents with physical disabilities only and i met with mothers and fathers and now i'm currently research-wise i'm working on obstetrical violence in the general population for
now but maybe we can maybe we i i will be i will have more women with physical disability population in in the next in the next phase of the research and i'm also working on reproductive coercion within women with physical disabilities so it's directly linked with my thesis where i found that some women had lived some reproductive creation it could be not to have children they were oppressed enough to have children for example so um i will be interested to go deeper in those kind of experience great thank you so much and evelina how do you introduce yourself thank you so much it's really nice
to be part of this nice group uh this evening in montreal uh my name is evelina pitouch i thank you so much marjorie for putting up the group tonight and for the invitation so i am an occupational therapist by training and currently i am conducting research and my phd at university of montreal in the school of rehabilitation so and with a really a background in rehabilitation and so my phd focus is also uh similar to karate's population on parents having a physical disability or a neurological disability and having also children in the preschool aged period so i was really interested in better understanding what are
the needs of those families headed by one or both parents having a physical disability in our research we were pretty inclusive so we can considered parents having also other kinds of disabilities it could be intellectual developmental autism mental health issues whatsoever and so in the course of my research we conducted a few studies mostly qualitative based so similar to what laura was mentioning earlier in terms of having a better understanding of the lived experiences of those parents from a qualitative perspective and also bringing that occupational therapy that rehabilitation perspective into account and we were also interested in those studies in better understanding what were the
assessments the assessment means used with parents with physical disabilities and so in conjunction with those uh qualitative interviews we conducted we also performed some home-based observations to have a better understanding of how parents accomplish their daily parenting role and their life skills when they have a young baby at home and yeah so i think that sums it pretty much great thank you so much um i'll just briefly introduce myself because if i don't my colleagues are going to tell me that i should um so i am a mom with a physical disability i sustained a spinal cord injury 10 years ago but before that i
had been working in the field as a psychologist as a healthcare manager and as a researcher for 15 years in the field of parenting with intellectual disabilities so i was already sort of pretty aware that there were definitely disparities and struggles um discrimination and stigma uh prejudice you know uh facing parents with disabilities and then when i became um you know a mom i was already a mom to a 16 months old boy so when i became a mom with a physical disability i sort of experienced some of it and some of it not as much or not at all in comparison to the clients
that i served and i think that uh in big part when i didn't um go through the same disparities as my clients used to i think it's um really in relation to uh privilege status um and the fact that i was already working in the system and knew how to work the system so it certainly gave me uh an easier maybe way to navigate how i could get services for myself and for my son it also helped that i knew lawyers that was pretty good so i'm really excited to be here for us it's really part of a series of events that we're calling amplifying
voices of parents with disabilities and those events you know really bring forward parents who have a disability themselves researchers and clinicians like we have today and next week on june 1st is our big event which is um you know we have 12 speakers and those 12 speakers are 12 parents with a different disability who who will be sharing five minutes a little story about how they became trail blazers or advocates for themselves which had an impact on parents like other parents with disabilities as well so it's um quite exciting and if you want i can send you the information in the chat later so we're
going to dive in right away into a deep question i've just mentioned about the disparities and the discrimination and the stigma um so this is open it's a conversation um so you guys you you decide who will go first and so forth what were the disparities the biggest disparities that you've seen in your research as you were talking to the the moms and dads and parents with disabilities that you've met shall i go i'll i'll start the conversation off and please just jump in um i think that and and something certainly that i encountered but i think it's something that's echoed throughout the research since
the 1940s but the impact of poverty so it's not the intellectual disability per se or the disability um per se that impacts parenting the most but the social position of being impoverished and living in social conditions because of a social identity so um to me that was and still is one of the biggest disparities particularly i'm speaking more particularly related to parents with intellectual disabilities and my colleagues who are involved in in research that includes diverse disabilities please you know speak to that too um but the impact that that has on the everyday lives of families headed by parents with intellectual disabilities is quite striking
um marjorie mentioned this already but the the social and um systemic barriers that these families face so um many of the families that were in my study were involved with child welfare and we know that many of these families are over represented in child welfare so about one percent of parents with intellectual disabilities um exist and in canada over 10 of all child maltreatment cases include a caregiver with a cognitive impairment that is usually identified as an intellectual disability and out of that that 10 over 50 of parents with an intellectual disability um will uh lose custody of their child whether it's temporary or or
permanent um so these are our huge disparities and um and there's also health disparities um increased rates of anxiety and depression and trauma um that are not well treated either so that's that's quite significant and and when we're talking about what impacts parenting um while having um to to deal with the daily struggles of having to navigate your social world potentially with trauma and not having treatment um we can imagine the impact that has and where we need to continue doing our work and for me i didn't have a lot of parents who were living in poverty i don't have a representative sample and in
that way but i would say for the the parents i met who were living with the physical disabilities and who became parent with their disabilities they didn't for most of them they didn't be became acquired their disability after being parents so most of them the it was the the lack of knowledge and the discrimination experienced um in their relationship with the the professionals so most of the times the medical staff didn't didn't know it was possible for them to become pregnant for example or which impacts the physical condition would play in the pregnancy for example or in the delivery so it was always a lot
of questions a lot a lot of um uncertainty and it was really hard to get answers and most of the time um and and it plays in vile in uh obstetrical violence as well but most of the times medical staff are not always interested to know more and they are categorizing so you automatically are a high-risk pregnancy so you will go to high-risk pregnancy clinics um either if you qualify or not to high-risk pregnancy but we don't know so you are you are an high risk pregnancy so it could be really discriminant for the most of the time it was the women who were reporting
those kind of those kind of discourse uh from the professionals and maybe if i can add to to the conversation so in terms of disparities i would say in my research what i've not noticed maybe being one of the biggest disparities is in terms of having access and access from a very large point of view so access to services access to information having uh physical access to to about either information or services if the parent is a wheelchair user or other kinds of mobility aid in use in daily use so um i would say that's a big disparity so for example in terms of having
access to information it could be a parent who wonders well what are the physically accessible daycares in my neighborhood where i could go and drop my child for the day for example in terms of having access to services while in terms of like karate you mentioned having access to health care services while it's being aware that those services exist that they are inclusive of parents with disabilities um having having the knowledge uh in due time of those services so i i've interviewed some parents who did not know of the resources that were that they could have used at the proper time of their of their
journey or their rehabilitation for example um when services exist sometimes they offer pretty short periods of services so in a rather short period of time whereas the funny thing is parenting is a life role right so it's over a continuum and unfortunately they're currently from my from my knowledge and maybe you have others other examples to share um our our health care our social services and so on are not um supporting parents throughout their life journeys so whether it's when their children are young getting older etc their needs vary greatly but there is no structure in place that can really support them throughout their parenting
journey my mom i'm really glad that you all sort of touched on on key points that i think you know is definitely highlighted in research um and uh you know one thing to to talk about accessibility um you know next week for for us in canada is accessibility week uh so it's a pretty big week there's a lot of like conversation about how to provide and and make sure that there's more access to services yet we are in 2022 and still sort of wondering um you know what kind of access for parents with disabilities i was doing a quick search today in statistics canada i
was trying to find statistics about parents with disabilities and i was looking but in the same time i sort of knew i wasn't going to find anything but i just wanted to make sure because i was going to potentially talk to a minister um a canadian minister who's you know um involved in employment and disability inclusion so i wanted to just make sure that um you know in case some some statistics sort of like grew you know in the last week or so and again sort of what comes out is families where the child has a disability and the little that comes out that talks
about sort of like potentially parenting although it doesn't mention parenting it sort of mentions you know 15 to 64 years old adult or young adult with a disability what it says is that they're less likely to be employed if they're living on their own or single they're more likely to be living under the poverty line in canada and uh those to me were significant and when we talk also about access um but yet we don't even sort of think of asking the question where is parenting happening in uh you know this population then how can we ensure that we have the right services and that
is sort of like a question that i think all of us um you know think about often um so before i go on to the sort of next question that touched upon sort of the rights of persons with disabilities um any of you want to sort of mentioned something about disparities um before we we go on i mean we can still come back and forth but just want to make sure maybe i just wanted to react to what what you just shared marjorie so i believe you are unfortunately correct in terms of you looking up the statistics um from a canadian perspective i think the
closest we can get is having a sense of how many uh women or girls with disability of reproductive age have a disability um if if i consider uh in the province of quebec um and i believe also as as where you did some some research in the area um i think our last statistics uh provincial statistics um specifically regarding parents with disabilities were collected 30 years ago so somewhere in the 90s so i think it adds kind of to the problem um in the sense that if we don't know how many parents are they how can we actually even think of services and of support
systems if we don't know who are we thought talking about so um i think this is a big issue and um i was just reacting to what you shared in terms of canada and the province of quebec but unfortunately i believe the the situation is kind of similar in other regions uh provinces or countries around the world yeah we're all struggling for those statistics um i was recently talking to daniela ezee who is a mom who's quadriplegic she lives in the states and she gave birth two years ago to uh twin girls and i was talking to her and she was talking about like okay
you're a researcher like give me statistics like how many are we and what does it look like and and how many services and i was like i'm a researcher and i don't have those numbers because i can't find them and we have to sort of like uh sometimes use a lot of creativity to get a little bit of a sense of you know one percent in the population yet 10 represented in child welfare so we try to sort of identify that there's you know a large uh population and bigger than we think um you know in terms of parents with with disabilities and that's pretty
much across you know certainly the uk we know that sweden we know iceland canada australia the us you know those are countries that we have quite a bit of research in this area so uh definitely unfortunate um the next sort of question that i wanted to to bring forward so we all know that there is a convention on the rights of persons with disabilities that exist um it has been ratified by most of the countries that i just mentioned which means that when you ratify it you're supposed to sort of put it in place or sort of listen to it and sort of try to
follow it as as a way to inform your services and the weight you organize uh the health care system so in this convention there's a specific article that we often cite that's called article 23 or it's not called that it's called the right to family it's article 23 in that convention and it really talks about sort of the right to choose if you want to be parent how many kids you you want how um you know how often you know depending on like when you want to have your your children um and it also talks about sort of the responsibility of countries to offer services
so if i bring this article to your attention right now what what are things you would like to say about um the convention this article specifically and maybe how it relates um in terms of your experience and research data maybe um maybe i could start and we talk about the convention we talk about support we talk about services um in my thesis i um focused more on universal services so the services that are supposed to be for everyone um without regarding any specific things for example the maternity wards when you are pregnant you are supposed to be able to go to a maternity ward if
it's your choice to deliver your baby um even if you have are living with disability if you are living in the streets if you are super rich anything so and literature tends to show that people with disability would prefer would value universal services because sometimes they are less discriminate discriminating and they are less pointing out their disability if i am a future mother living with disability maybe i don't want to be treated and future mother without disability sorry for my english i hope i i hope you can understand my point so um usually despite uh the the fact that parents with disability would value universal
services uh they are um they receive like more specific services that are not meeting their needs that's my point so maybe that's what i want to point out and maybe i want uh maybe we can discuss more about what we should do implement more specialized services for parents with physical disability and in support to the to the article 2023 of the un convention or do we want promoting more inclusive universal services so with a medical staff that will know a little bit about your life and will search what you are to to answer your question for example i don't know if i'm clear i'm sorry
it's been a long day it's you're very clear it's perfect so so it's that's what maybe we we should discuss what we want to do about the services we want to out i think that's it if it's okay i'll jump in there i think that's a great question and i think it's a debate uh within research and in practice should we be exploring inclusive services for all people that include all their needs or should we be offering specialized services that are more targeted that are more individualized and of course i think that we can argue both and i think um that our families might argue
both but certainly what i've heard um from a lot of parents with intellectual disabilities is that specialized services can be like kahadi is saying stigmatizing so it's a it's a label that a lot of the families that i've worked with have um ran away from especially when they were diagnosed as a child and particularly as they became adults because it usually led to child welfare intervention so i i think that families might say that they would want to have inclusive services that are in their community and um that they have workers that are well equipped um and well resourced in order to meet their needs
i would then sort of want us to think about if we're looking at inclusive services then what should that look like and i think we have some ideas in terms of interconnected support and sharing knowledge but how do we ensure that people then don't fall through the cracks and that their needs are not being met that workers let's say in perinatal clinics are able to support a parent that maybe might need more visuals or more coaching or repetition so you know i think we we have some answers to that and we have research that's begun to sort of unpack that um the program in australia
in terms of healthy start that looks at creating these hubs of services so that practitioners are working together they have similar frameworks um knowledge base this is related to parents with intellectual disabilities but knowledge base around best practices are shared so that everybody has access but the the goal is that it is ultimately provided by basically mainstream services but they're they're equipped what do you think evina well i think first it's a really interesting debate um in terms of do we want specialized specific services or more in terms of universal inclusive services um i guess my current understanding or how i see it for now
is it shouldn't be a either or but both um i think our support systems would be stronger if we had actually better mainstream care services community services and resources that would be inclusive and that would consider the needs of all parents including parents with disabilities um but also reflecting on your question marjorie and the and famous article 23 and that un convention has also many other articles that are really interesting in terms of having access to health care in terms of having access to rehabilitation services having access to mobility aids and and and so on and all these issues touch in a way parents and
and their children as well so i think it goes it touches on other issues than only starting and having a family but that being said going back maybe to an earlier point i made in terms of having access so here in montreal we have a specialized service clinical service that is that was founded and that is still delivered by occupational therapists it's called the parents plus clinic and they are existing here for over 20 years and unfortunately i know for a fact that they still get each and every week the comments um from other healthcare providers and service users oh i didn't know you existed
so um and i think we also i don't know there's a i think a big thinking to be done in terms of how how do how do we make sure that parents have the services that they need in due time how do we make sure that their services uh respond to their needs i see also some big issues in terms of if we if we want to promote more inclusive and more mainstream services well who will be those knowledge providers those service providers i mean there's a big issue in terms of training and continuing education and it's unfortunately to my knowledge not topic that is
really much discussed um in in in healthcare and in in our education for our future healthcare and social workers so there's a lot of thinking to be done i think in terms of organizing better support services for parents go ahead carly no i i would i would i wanted just to add and to jump in um we work a lot in silos so if even you are either you are a person with a physical disability or a with an intellectual disability or your appearance but most of the times it doesn't cross so we have to think a little more in an intersectional way to provide
maybe more powerful services yeah well kali that's exactly what i was going to to ask and actually i was going to um ask iblina to talk a little bit more about that because in your research every now that was pretty evident when you asked that question to focus groups um how you know there's that clear gap and it's you know you you're either sitting on that chair or this one but you're you can't be sitting on both chairs do you want to talk to us a little bit more about that yeah thank you and i i really agree kylie with the point you just made
and i believe laura you shared earlier that those parents continuously fall between the cracks and although i know your your population of interest is parents with intellectual disabilities it's really a finding that we had also in our research with parents with physical disabilities so we have some really absurd situations for example a parent which happens to be an adult will have home services um for example in terms of personal care assistance but that same parent who would be a mother a father a parent um who would need support for their parenting um in terms of child care or i mean anything that a parent would
need washing clothes exactly washing clothes um well that same parent has very difficult support i was going to say has no support but i know there's some happy exceptions um so it's kind of those situations we're talking about the same person but somehow our our system thinks about their individual needs but not their social needs and we i guess as being a clinician and a rehabilitation worker i think we tend to think about a number of roles that are maybe more productive like uh a worker or like how do we make sure that this person can return to work after uh their trauma accident or
illness but there's many other social roles in the life so including for some being a parent right so um i i do think that we we need to kind of reinvent how do we support persons with disabilities who who are also parents who who may wish to be a parent someday so that was also a finding in our research um in terms of well maybe now i don't want to be a parent but having a disability i want to know what are my options in terms of reproductive health care options and how will my disability impact my pregnancy and how um what kind of supports
can i have once i will have a baby so all these questions and yes so going back to your initial question marjorie that was repeated over and over by parents um how much they fell between those cracks so a parent will contact for example someone in the child care world and will that person will respond to the parent oh no we don't offer services to parents okay so then they will go to family services hoping to have access at some some form of help for their parenting oh we don't provide services to persons with disabilities so there's always an excuse there's always something that makes
that they somehow don't fit in the current um framework of services or resources next week um in the amplifying voices event uh we have one of the speakers who is now a grandmother so not only a mother but a grandmother of several uh granddaughters her name is tracy o'dell i can say her name because she's openly sort of going to be talking about this next week and when i spoke to her i was very impressed because when i had my accident one educator you know that i met in the rehabilitation center mentioned this program the nurturing assistant program that was happening in ontario and she
said you should check it out because i was a single mom to 16 months old um and i was sort of like wondering how am i going to do this as i'm sort of you know learning everything again physically how to do things and having a rambunctious you know young little man um and tracy is actually the so we're now 10 years later tracy is actually the person who got the nurturing assistant program um organized in ontario and she was explaining to me how you know she fought for that for that because she was pregnant with her second child and she had seen her husband
do all the work all the baby changing diapers and baby care um with their firstborn and so she felt that for her to be able to get involved in the parenting task she needed someone to be her arms um and her legs um anyways all that to say that this program exists but the way she told me about is that if you're a parent who actually requires help with your own physical needs so you require someone because your arms are not strong enough for example or you can't walk then you have access to that program but if you were or if you are a parent
like me uh 10 years ago meaning paraplegic i have full force of my arms then that program would not have been available to me because i could do the skills for me on my own so then it was assumed that i would be able to do the skills uh for my child when things are very different and i think that's um it's italy now who mentioned also employment and how certain roles are are prioritized and so for me you know i was like i had all the services i i needed and wanted uh to go back to work that i was very well supported but
because my son was two years old um well parents plus clinic ends at two years old so basically i got zero services on the parenting apart from maybe an educator who told me one day you need to regain your role as a mother after being six months away from my child which i was like no duh of course i do but how do i do that now so those conversations i think are what do we really need and how can we organize that um is is very important and i want us to come back to those services questions but maybe before we go back to
what's needed in the future and what kind of services if we had um you know any ideas i would want to talk about the positives so the positives in terms of parents um and parenting with with disabilities um what are the strengths did you notice that what would that be in terms of your research um that you would want to share maybe i can start for this question so i think in my research um i've seen parents having demonstrated a wide variety of skills ranging from creativity resilience as you mentioned laura previously um problem solving um advocacy skills in terms of like i think your
last example marjorie was really highlighting that very very well how often too often uh parents need to fight for their rights fight to have access to supports and services and so on but that is definitely a strength i saw and marry in many parents having that advocacy and kind of willingness to fight but of course all of that it's um time consuming and it takes a lot of energy and stamina so i know your question was around the positives but um let's not forget how how draining that can be to always uh being kind of in that alert mode um and ready for your next
fight right um so uh i think i also saw um kind of the beautiful adaptation so maybe i'm more sensitive to that being a an occupational therapist but i saw how beautifully some parents and children work together in a different way than what we usually see represented maybe in in our tv series and our movies and so on but somehow they managed to do all that child care in a different way using one arm using no arm using adaptive equipment and so on so there there's something really i think in terms of a creative aspect to parenting that is not well known and not well
represented and that i found is a big strength in parents yeah maybe uh thank you evelina maybe what i could have is that for for my participants regardless of whether they received or not proper services or proper support and they usually felt a strong sense of being a good parent of having a positive relationship with their children of not feeling disabled by their children father told me that one day i i'm not feeling disabled when i'm when i'm with my daughter for for her i'm her father and we are doing our stuff and that's it and we have a good relationship so i think it's
something that works great for parents but sometimes maybe it's also okay maybe it's also something that could be dangerous because you have a great relationship with your children everything is okay i can i can manage and so i will not fight for services and services will never have to be better because i i found ways to work beautifully without services so services can say and governments can say okay we don't need to we don't need to work more because it's okay for them they are happy with their children children are okay and so we don't have to do more and sometimes it's something that i
fight for in my research because it's not the job of the parents it's the job of the services to adapt and to be more here and if the parents those on one the if the parents don't want the services it's okay but usually they are doing a palliative for the services so that's that could be a problem and usually um when we are parents we forgot all the bad that happened with services because we are focused on our relationship with our children so that sometimes that's something we we see um in obstetrical violences women doesn't do anything against violence obstetrical violence because they have their
children and they tend to forget for a time that it went bad and sometimes it can be the same with parents with the disability yeah and just to add to that i mean i think that i've also seen similar things in terms of resilience and uh resistance and the ways in which a lot of the moms in my study um exercised this resistance so sometimes it was standing up and you know yelling at their family member to say listen i'm effing vr word um to reclaim their identity and just sort of say i've i've had enough and i do have some things that that i'm
dealing with that does impact me to um sometimes leaving their abusive partners in order to make a better life for themselves but mostly so that their children can have a better life so certainly the resilience and the resistance was also something that i saw and in terms of strengths also um in for working relationships with professionals so some of the parents talked about and these are things that i think we've we're all practitioners or we're practitioners so i think it's something that we can relate to and maybe have been practiced upon as well but um parents talked about uh positive working relationships with their social
workers with their psychologists with helping professionals um where there was trust where they felt as though they were listened to where they felt as though um what they said mattered and that they were the worker was identifying what's important to them and starting with that really um had an impact on on the process i think we can all all of us here can talk about some examples of where we've also seen um let's say there's a shift in worker and there's a shift in a working relationship and the impact that has on on families i know marjorie has tons of those stories and and and
i think we all do um but we've seen it to the point where it's decreased the parent's anxiety so it's in relation to having child welfare involved having a new worker having a new worker look at the parent and say you know you're a good mom and we're going to work on this together and the impact that that had on the parent you could see the change in their face and the decrease in their anxiety so i think that's um something else to to consider when we're thinking about strengths that working relationships um there can be some positive working relationships even though part of the
research is to also be critical of that um and to continue to reflect upon that and the power that professionals have in the lives of families but there there are also positive looking relationships and things we need to build on yes um it's interesting because it made me think of the concept of independence and how you know this is something that we expect parents period to be independent to raise their children independently and i think even more when the parent has a disability to some extent i mean that's certainly some things that we've seen in research yet i was listening to um danny's documentary about
her her pregnancy um and delivery of her twins and she also sort of mentioned sort of the the notion of independence and interdependence and that's something as a parent that i have also reflected upon um and i find that when we talk about relationships and about sort of asking for support or receiving support or having sort of um you know that help someone to be our arms or legs if we need that um is something that's undervalued by society any thoughts from you guys yes i i think that it's a it's a myth um that any of us whether we have a disability or not
is independent and particularly when we're a parent so we have some sort of support system whether it's a partner whether it's a neighbor the community the church formal services that are involved and that is seen as is natural um whereas for a lot of our families and even you know for myself as somebody with a mobility issue i you know i think that it's pathologized it's seen as negative so if they receive services it's because they can't do it on their own it's because of their disability um as opposed to seeing it as we all need support it may look differently and to individualize it
but it's often held against especially parents with intellectual disabilities and i'll let you you guys speak to to parents with various disabilities but it seems negative and so there is a double standard uh when it comes to to parents um with intellectual disabilities and i think that that would be one of the things i think that we need to shift our understanding of support and also look at you know interdependence and mutual support and look at the ways that parents with disabilities provide support to those around them to their children to their family members to their partners but we have to be looking at that
more closely independence is is also culture oriented as we are living and really and we are conducting our research in really really individualistic societies so maybe i don't conduct research in other areas areas of the world but maybe we can maybe we could learn something else about parenting parenting with all kind of specifics not only disabilities but yeah we are in a very individualistic society as well maybe if i can add to that so with my clinical background i mean and rehab and rehabilitation um that's kind of a big um big point right so persons who are in rehabilitation kind of all the clinicians around
them aim that that person be the most independent uh once they finish or kind of have their their rehab uh terminated at some point um and perhaps i was reflecting on what you said earlier marjorie in terms of that educator telling you that you need to reclaim your mothering role so i guess that was kind of her way of saying um or an invitation to kind of regain your independent independence in terms of your parenting role so i i think it is important to reflect on that how can we facilitate parenting independently for parents with disabilities but that being said i think we definitely need
to think um from a clinical and from our research perspective on in the interdependence as well there's uh like my colleagues just said there's no parent that parents alone um so i think we particularly need to think about those parents who are isolated maybe marginalized who's single parent what kind of support systems we can make sure that they have in terms of yes being independent but having those interdependence for some aspects maybe of their parenting that are too difficult or that they don't have the energy to engage in and so on yeah i'll um all of this i'm smiling because i'm thinking of like different
things i'm making links and there's one research before before you karali um if you remember from um uh student sandra who did a study and she looked at character strength and identifying character strength in parents with disabilities to me that was both sort of um amazing because it was an area of research that we didn't really look at in terms of really focusing on identifying the strength um but it was also sort of amazing because personally i had even thought of thinking of even my own disability as something that could bring me strength and since then i've i've researched because that's what i do when
i i find out about something that's interesting i then research uh on that and certainly when we talk about interdependence we're actually talking about the character strength of teamwork and how two people or several people work together and that could be with the professional but that could be with you know in my case my mom and my dad who who were helping me raise to some extent you know my son and one thing that i um a story that i often sort of share is the day that i don't know my son must have been three years old three four years old and um he
uh there was something for parents at school and so he had said to me um oh well i'll invite my parents with an s and i told you i'm a single mom so i was like parents what do you mean who do you mean and he said well there's manny and there's many and she does you know go to the park with me and there's pepe and he plays music with me and then there's you mom and you do everything else and you're the boss anyway so if i need something i have to ask you first right and for him it was sort of like
that's who my my cocoon is that's who are taking care of me and there was no um difference in terms of well there was hierarchy obviously because i'm the boss thank god he said that i was very happy but it was also sort of about how we worked well for his benefit and it wasn't sort of like who does more or are my parents doing for me or instead of me but it was really sort of oriented towards that and i think that those two sort of sandra's thesis in in looking at character strength and and us sort of having that lens like for example
um i also often say that my son is more solution focused probably than if i hadn't had a disability he's definitely creative um i don't have the wheelchair with me but as a four-year-old he was creating wheelchairs in legos he uh loves playing legos and at the time there was no wheelchair legos so he built some he took the wheels of another sort of construction and would do that he would create you know his lego constructions so that there was no stairs there with ramps and so forth and so everything was like oriented in terms of um looking for solutions and being creative about it
uh he's also very socially uh driven socially justice driven um in in that he has the strength of fairness and so all of these things are him being shaped by his environment and his environment of having a mom with a disability has shaped those different elements and so yes i think it's you know changing a little bit that lens into really focusing on instead of what might they be missing or what might be harder and there's certain things that might have been harder for him as a child just like they are harder for me as a parent who became disabled but there are also some
some beautiful moments and beautiful strength in that and i think that that's what we need to to also sort of recognize and focus on i just want to make sure we have a little a bit of time for for um our guests to ask question so if we were to ask and and try to sum up um is there anything that we should do in research or maybe in clinical practice that would be different what would be that next step i was really inspired by the last part of our conversation around in their interdependence and teamwork and i think whether for parents families clinicians researchers
we definitely need to work more as a team um the event next week is called amplifying voices and i think that we all collectively need to make sure that the voices of parents with disabilities are heard understood and put into applications so in order to do that karate you mentioned earlier sometimes our systems work in silos i think we cannot go into that direction so we need to work as a team with our own frameworks lenses um perspectives but i think everyone has something to bring to the table in terms of do you contributions to go yes did you want to go i can go
after you okay no i just wanna i just wanna add that maybe as a community we also have to expand our vision of parenthood a parent is not only a mom with a dad with two legs two two arms with jobs with money and everything so maybe we have to expand our vision of parenthood and maybe we have to develop a more public representation of parenting models in the in in the in the space in in the in the tv in the journal in the series you mentioned the tv show earlier so yeah maybe we have to do that i agree i think to jump
you know off of what all of you are saying is we need to reconceptualize support and what that means and what it could look like and how that needs to be centered in people's lives and realities and also you know you had mentioned um the influence of culture so the influence of larger culture marjorie was talking about family culture different cultures i think that we have a lot to learn from various cultures including our indigenous communities just thinking about communal support and interdependence and holistic support so i i think that's that's something that we need to to explore and and look at how that can
impact the way that we not only see people but the way that we offer services great um i would now sort of open up uh in the chat or our guests if you have any questions that you want to ask any of us you are more than welcome to do so and it's okay if you don't um you have the email anyways um so you can send um send me an email at any point and uh we are very um we are very generous kind of group of people we we love to uh to serve and to uh make sure that uh the voice is
represented and i will maybe end on that actually in terms of representation and karate you mentioned it um just now in terms of representation i think this is why all of these um events are are being organized and for sure this is sort of um a little bit what what i triggered in terms of of making sure that those events are happening as i felt really strongly about that need to to be represented but to amplify voices of parents but what i found especially in finding the speakers for next week is that i'm not the only parent with a disability that felt the need to
be represented as well and so um you know if i take you know i talked about um tracy already i talked about danny and her documentary she's done several different uh you know she holds a blog and she she um did a webinar talking about sort of perinatal health in spinal cord injury and the reason why she did that is to have representation and to educate and to make sure that people are are not reacting and that they have information and you have others like christa couture who is an amputee who also wrote a book who also uh looked at you know in terms of
a blog and make sure that there were pictures that resembled her and the way she did that is that she took picture of her being pregnant um with her leg you know showing so that it would show that she was amputee and proud um there's eliza hall who's going to be there from from australia who also sort of you know did a podcast um wrote co-wrote a book with 25 families uh headed by parents of different disabilities she's currently editing a similar book but with uk and us families uh with disabilities and again it was sort of that need of being represented and not being
the only one sort of being pregnant or or dealing with you know how should i do this or you know we talked about being creative but sometimes creativity comes from looking at what others are doing and i think that that's all sort of um pretty inspiring when you we have that chance to create the community to be able to talk about you know their realities and dream a little bit about what we could do next and so on that i really thank you all for being here today with us and for taking the time to share your knowledge kahali iblina and laura thank you so
much and for our guest thank you for for being you know even if it's late in your country that's pretty awesome and you can contact us at any time if there's any more questions so thank you all you
Transcript generated from the recording and lightly cleaned. Some names and wording may differ from the spoken speech.
