December 5, 2024 • 55 mins
On today's episode we commemorate International Day of Persons with Disabilities (which was two days ago on December 3rd), by discussing disability in our family history and latinidad. We are joined by Meg Merten and Lillian Schene who have both worked with latinos with disabilities. Join us for a vulnerable, heartwarming, and informative discussion.
Please visit Edward's blog! Let's keep this family research going: http://ruedafingerhut.blogspot.com/
Rediscovering Latinidad is an independent podcast. This show is hosted by Briar Rose, Fausto, Edward, y Jellissa and is engineered by Matthew Sambolin. Cover art designed by George Colon. If you would like to reach out, please email us at RediscoveringLatinidad@gmail.com, or leave us a voicemail at 646-470-9824. Please find us and follow our social media accounts on Facebook as Rediscovering Latinidad, on Instagram at @RediscoveringLatinidad, on Twitter at @RediscLatinidad, and on reddit at r/RediscoveringLatindad. If you would like to become a member of our Patreon, please join at: https://patreon.com/RediscoveringLatinidad?utm_medium=clipboard_copy&utm_source=copyLink&utm_campaign=creatorshare_creator
Please visit Edward's blog! Let's keep this family research going: http://ruedafingerhut.blogspot.com/
Rediscovering Latinidad is an independent podcast. This show is hosted by Briar Rose, Fausto, Edward, y Jellissa and is engineered by Matthew Sambolin. Cover art designed by George Colon. If you would like to reach out, please email us at RediscoveringLatinidad@gmail.com, or leave us a voicemail at 646-470-9824. Please find us and follow our social media accounts on Facebook as Rediscovering Latinidad, on Instagram at @RediscoveringLatinidad, on Twitter at @RediscLatinidad, and on reddit at r/RediscoveringLatindad. If you would like to become a member of our Patreon, please join at: https://patreon.com/RediscoveringLatinidad?utm_medium=clipboard_copy&utm_source=copyLink&utm_campaign=creatorshare_creator
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:13):
Briar Rose here from the Rediscovering Latini Dot podcast. Are
you a Latina parent working to break cycles in your family?
Do you struggle with managing your relationship with relatives? Are
you looking to heal the intergenerational trauma that you grew
up seeing in your family? Then check out as Kualita
by Lax Parenting. You'll find powerful workshops to help you
(00:34):
on your journey, like Crime, which is all about reparenting
ourselves and learning to heal the wounds we may carry
from childhood to keep us from projecting those wounds onto
our children. You can also find the workshop Ami Manira,
all about how to have difficult conversations and set healthy
boundaries with other adults in our lives with the holidays
(00:56):
and family get togethers around the corner. I highly recommend
checking this out. There are so many inspiring workshops for
you to choose from. To learn more, go to www.
Dot latinxparenting dot org slash Escunita. That's www. Dot latinxparenting
dot org slash Eskunita. Welcome back everyone, Welcome back. Hey,
(01:27):
this is season five, episode twelve of Rediscovering Latini Dad.
My name is bri Rose.
Speaker 2 (01:32):
I'm Fausto, I'm that word and I'm Lisa.
Speaker 1 (01:35):
And on today's episode, we will be discussing a disability
in our family tree. Thank you, And today we're very
lucky to have our panelists Meg to join us. Meg.
Hi guys, Hi Hi way, So we are super excited
about this episode. It's going to be heavy, but it's
really interesting and really important. So does anyone want to
(01:56):
start off? We for context, I did send around an
article to our our co host and panelists, the ones
we sent away by Jennifer Senior, because it just touched
my heart in a whole way. And I'm not sure
if anyone else wants to star first you guys, good
or else? I can start reading something I wrote to.
Speaker 2 (02:18):
You go for it, Okay.
Speaker 1 (02:21):
So this is usually I'm getting my I'm dipping my
feet in writing a little bit because I was always
in awe of Feusto's essays, and to be fair, I
am not there. I am writing blurbs. We're going to
graduate to that baby steps, baby Steps, But I wanted to.
I wanted to, I wanted to say something in reference
(02:44):
I have just for transparency purposes. I am I have
a sister with severe autism. And what is previously known
as mental retardation. I believe now it is called intellectual disability.
And she's two years and eight months younger than me,
although I swear she still looks like she's sixteen years old.
(03:08):
So I have something I would love to share for Natalie,
my sister, and my ancestral copilot. You have seen the
world through a lens I could never comprehend. You have
an unconditional love and understanding of the world's rights and wrongs,
which is primal and a gift in its own right.
You have grown in a home and family and a
village of extended family, hearing two languages spoken around you,
(03:30):
but learning one. You are our father's our father's twin,
and in face and in stubbornness. You may not visit
Alsavador or understand the past the way I wish I
could share with you, along with the many things I
wish we could have shared and discussed in our lifetime together.
But you will always be a little Wanaquita, like me,
(03:51):
like little Nora. I see you got the love of
dancing from our dad, and so did Nora. I did not.
Maybe one day we could share papooses and just for
a moment we could share music, food, and be fully
present together in our heritage. As simple as it is,
you are an important member of our familia. Sorry, your
personality and legacy thumbprint is in our hearts, on the
(04:14):
family tree and will never be lost with the passage
of time. I haven't always understood. I've had a lifetime
struggling with conflicting feelings, but I've always loved you, and
I've taught Nora to love and extend the endless arm
of empathy. With pride, guiltiers, and a lifetime tapestry of love.
We will honor you and our ancestors today.
Speaker 2 (04:36):
I don't know.
Speaker 3 (04:36):
That was beautiful.
Speaker 2 (04:37):
Yeah, this was really beautiful. Thank you for sharing. Thank
you guys.
Speaker 1 (04:42):
But I am not the only one here who has
a heritage with family members with disability or have a
disability just you know, in their line or in their
media family or their friends. We all have our own
histories here, so I'd love to hear from our co
host panelists, whoever wants to start. Okay, I'm alerting Posto.
Speaker 2 (05:05):
Because yeah, so, I thank you so very much for
reading that Buyer. That was really really beautiful, and it
really reminded me of my cousin Maria, who we call
Maggie in the family, So Maggie would I actually don't
(05:28):
know how much older she is in me, but I
want to say she's probably in her late fifties, if
not sixties by now. But growing up, so, Maggie is microsophatic.
I guess I should I should say right when her
mother was pregnant with her, her mother received some sort
(05:50):
of like shot that she wasn't supposed to, and so
that caused the baby not to develop fully, and so
she's nonverbal, although she does try to speak and communicate
her in her own way. You know, she also has
intellectual disabilities. I think growing up, the way that my
(06:13):
mom would explain it was like, you know, she may
be an adult, but she has the mind of a child.
And so yeah, So Maggie and I were just like
road dogs when I was a little kid. I don't
know why I like felt this like connection with her,
(06:34):
but whenever they would come over and visit, like she
and I would like literally always always play together. I
like to think that I, at some point, at the
very least, was Maggie's favorite person. I think she was
definitely my favorite person and so yeah, so like we
would just I think like the family as well, right,
would would make comments about like this is so interesting
(06:57):
that like Fausto and Maggie are like each other's best friends.
And yeah, it was, it was. It's been a really
great it's been a really great experience. She is all heart.
She literally is just one of the most loving, caring
people that you will ever meet, in addition to being
a little bit of a breadth. But you know, I
(07:17):
think she she she deserves it. But I haven't seen
Maggie since since the pandemic. Actually, right, her mom now,
her mom is my dad's aunt, and you know, her
mom is now a little bit is advanced in age,
and she herself is like suffering from dementia. So there's
(07:37):
a lot of things that obviously she doesn't like remember,
and so I'm trying to protect them, right, Like we
haven't seen them. I myself haven't seen them in a
couple of years. But but yeah, Maggie, you know this
is this is for Maggie, right, Like this episode is
dedicated to those family members of ours who have a
different who have different brains, right and different and abled
(08:01):
abled bodies. But yeah, no, I love myself. So, Maggie,
I love.
Speaker 1 (08:06):
There's a new term going around that I hear.
Speaker 2 (08:07):
It's called neurospicy, neurospicy, and I like that, and I
think that that's exactly what she is. That is exactly
what she is. And she and I again like I
don't know how would literally share secrets. Somehow we would
communicate and we would figure it out. And she also
has like names for everyone, so yeah, she she just
(08:28):
calls everyone by by a name. So oftentimes for us
little ones because in the Dominical Republic we call children
chi chi, and so she would call us tty. So yeah,
so whenever she needed to speak to us, to anyone
about one of us, she'd be like ty and like point,
you know, point at whichever one she she was talking about.
Speaker 1 (08:49):
But yeah, it's amazing how they, at least for our
family members that I'm specifically speaking about, they have they
have their own words and mannerisms where you learn really quickly,
You're like, Okay, she's getting pissed off. Yeah, exactly that
she's gonna start asking for that soon. Like you just
learn like really quickly. It's like your own like language.
And I feel like that imprints into our family. You know,
(09:10):
it's a learned language and it's sweet, and it's different
for every family, different for every member. And sometimes you know,
what my sister may call somebody in the four walls
of our home maybe very different. You know, she may
call them outside when we're at family parties. But I
(09:31):
have to say with our family, I mean before before
Natalie was diagnosed, I don't think and I was about
five years old when she was diagnosed, and she was
about two, and at the time, autism was like one
in ten thousand. It was mostly boys. In fact, my
mom had to fight for the diagnosis because they were like,
this is just not a girl thing, this is just
(09:52):
all boys. And now we know from current research that
autism and girls presents very differently. But at the same time,
like the severity would have like they would have caught
that earlier anyway. So my mom always told me one
of the hardest things for her was, you know, for
when she had a five year old and a two
year old, you get yourself ready for the five year
old going to school. You know, you're getting ready. You're okay,
(10:14):
my five year old's going and we're you know, we're
gonna get ready for kindergarten. We're to get on the bus.
You're gonna go on, you know, with the teachers. And
I was a child that I was raised like not raised.
I'm not for my parents make it upset. My parents
were working parents, and my maternal grandmother watched me and
eventually my paternal grandmother when she came to the United States.
(10:35):
But I was surrounded by a million cousins at my
nana's house, including Natalie. So that's I didn't have a
structured school environment. So they got ready for that. That like,
she's turning five in May, and then September, like you know,
there was a thing all of a sudden, my sister
summer before I start kindergarten, she's diagnosed with severe autism.
(10:56):
And my mom said, one of the hardest things was
you prepared yourself for the five year old, but you
didn't prepare yourself putting the two year old on the
bus for a new school, specifically for her. So I
get like, as a parent now, I'm like, yeah, that
sounds incredibly hard because you're not development any ready. You're
not developmentally ready for the two year old. You know,
(11:18):
the two year old has time. You have time to
prepare yourself to transition that child, but not in my
mother's case, So so that that was one thing. But
with our family, I've spilt a fairmenitea by my family.
But I have to say on my Latino side, specifically,
no one has ever been cruel to my sister. Maybe
(11:39):
not understood all of her outbursts or when she would attack,
if she was in sensory overload or things, or her
routine was messed up, but never a judgment. I have
to say that I will give full credit where that
is due.
Speaker 3 (11:54):
Because it doesn't mean I'm going to race anything else.
Family think there's always one. Like my mother had a
cousin that was the same age as her, who today
we would say she was severely autistic. She was practically
nonverbal except for a handful of words, and she would
lash out, and she had all of these but she
was home. She was home with all the other cousins,
she was raised altogether. They never put her somewhere else.
(12:14):
I think every family has somebody like that, So when
you encounter it, like even Fausto mentioning, I didn't even
think of her when we were doing the research for this,
and as you were talking about Maggie. I was like,
oh my god, Yerira, my mother would talk about her
and in just the same way. The two of them
are like two peeds in a pod, and they were
born just a few months apart, and so they but
they were in a world's apart in part the terms
(12:36):
of their development. But just hearing that, it all suddenly
came to mind. I think every family has somebody like that,
and so when you encounter someone else, it's like, oh,
that's fine, that reminds me of something. So it's always
come up like everyone's got experience with it.
Speaker 1 (12:49):
Hey will, Hey, hey. I would love to introduce Lillian, who,
if our audience remembers, Lillian joined us for our episode
on conflicts in the family a couple of season ago.
You know when we just like threw the tea right
on the table and if it burned anyone, that was
their problem. So Lilian, I'm so excited is back to
(13:12):
discuss disability and Latino family is Lilian. Thank you for joining.
Speaker 4 (13:18):
No Proble, Thank you for having me, welcome back.
Speaker 1 (13:21):
Thank you so yeah. So, Delissa, I would love to
add on to what you were experiencing with your family
and your your members, and then we can go to
Edward Meghan Lillian and then discuss the novel and some research.
Speaker 3 (13:34):
Sure, I can't think of anything else I had. I
was the spur of the moment because I honestly hadn't
even thought of her while we were doing all this
research reading the article. It didn't even occur to me
until just this moment. I had to even look up
my dream, like what was her name? My mom used
to talk about her all the time, and she was
found mouth and would swear like she maybe had one
hundred words in her vocabulary, but half of them were
(13:55):
swear words, and she said that yeah, important ess and
you know, and tell people to stop or she would
kind of lash out and whatnot. But she was always
in the home with them. They never put her in
an institution. They I'm pretty sure she passed early in
her life, but it was never She was never stigmatized
by the family. She was always in the same environment.
(14:16):
She grew up with all the cousins. And I think
that's why I think, in general, let's say, like Latinos
have a lot of sympathy or empathy for when they
come across that in other facets of their life, because
everyone's got a cousin. Everyone's got a niece or a nephew,
or a story of somebody in the family that had
an intellectual disability.
Speaker 1 (14:34):
And I would love to really expand on that for
some research. From what I'm realized from when I research
I've done, is that Lily, and please correct me if
I'm wrong, please keep hold me accountable. But Latino family members,
Latino family members do tend to keep their disabled or
impaired family with them as long as possible, no matter
(14:54):
what it is in our blood. We don't give up
on our own and it's also badly if you do so,
even if you do need help, you're aging, or the
older parent has some sort of impairment that they can't
take care of them anymore. In my experience from what
I've seen and heard around me, is you're gonna have
(15:15):
to pry that child away from them, sorry not child,
that individual away from that family because everyone wants to
take care of them. And I have actually found in
my own family we're very lucky. My father has a
wonderful hearted cousin who lives very close to us, and
when we needed things like my sister needed batteries at
(15:35):
or band aids, at my wedding and like she like
the shoes were hurting her and all the things we
were preparing, we forgot band aids because so my aunt
came with band aids to the wedding and she was wonderful.
And then when my sister didn't want to leave the
car at my baby shower and everyone's inside the little
(15:56):
VFW hall and she just didn't want to leave the car,
my aunt would go out there and just spend time
with her, and like you know, sometimes she gets her
things like pure Like it's very much a leaned in,
interdependent like family dynamic that like it stays there. And
I'm really grateful for that because I don't know, this
is just me shitting on North Americans right now, but
(16:18):
in some ways I feel like we've lost that in
this It's a very too self reloiant culture to our own,
like we won't admit when we need help, which is
when we will just be We will discuss mental health
next season with Lily and hopefully, but this episode is
for disabilities. Uh So, Lilyan, what has your experience been
working with the population. Am I correct or do you
(16:39):
have a totally different.
Speaker 4 (16:40):
You are right on point. I mean, honestly, do you
have to come You have to think about the cultures
that we come from. In other countries, there is no disability,
there is no income. People have to deal with their
families no matter what they take of them. They step
(17:01):
up to the plate like your family did at the time,
and needy, they just they will take over. And that's
what family does. And with somebody who's disabled, they tend
to be extra protective, yes, excellently, and that's that's that's
where we come from. That is where a lot of families.
(17:21):
Latino families are very family oriented and they will step
up to the plate in that aspect, like little things
like that, they will completely take over. So everything you
guys talk about is exactly what I've experienced in the field.
A lot of people. What happens is they have to
(17:42):
be educated, so they get into a certain situations where
they end up in the hospital, they end up in
the system. That's when they tend to learn about these
things like disability or guardianship. And there's a legal standpoint
because here and then United State, their loved ones have
(18:02):
their rights. A lot of our culture don't believe in medication.
We didn't come from that that was something back in
the day that people did without. But nowadays you know,
they're seeing the improvement with that and it is important
for stabilization, and families are becoming a little more open
to it, which is good.
Speaker 1 (18:23):
Well I have to just to asside step on that
for a second. I have definitely had conversation with Festa's
husband Rory, about how in some families where if you
say you have mental health issues, they're like, no, you
just need Jesus, yeah.
Speaker 4 (18:39):
Goat got yes, oh my gosh. And my family is death.
I come from a religious background, so my family, when
certain diagnosis is started happening in my family, they were
very against it and they had to be educated. So
what I would just like to educate people on is
(19:00):
how to do disability. So the first thing is how
to apply for disability. It is literally a simple phone call.
You call and you write down the date somewhere because
that date will be very important in the future. What
happens is they do an intake kind of assessment on
why you're applying for disability, and they'll go through kind
(19:21):
of all your issues and basically what the Social Security
Administration wants to do is prove that you cannot work,
so you cannot work. You know, there's people with mental health,
like they have a problem just getting out of their
car and going into the store, and what feelings are
they experiencing when they cannot do that. That's what they
(19:44):
need to express to social Security so that they have
an understanding, you know, and social security unfortunately, there's a
lot of people working in social security. Let's face it,
you never know who you're going to get on the phone,
and they're just they're just taking the in information in.
So you have to be I tell my clients to
(20:04):
really go deep with their experiences because it's really getting
that person on the other phone on the other line
to understand who they are as a person and what
their struggles is. So the first thing is I always say,
is to make that phone call. It doesn't hurt if
you are struggling to find work or you keep getting
(20:25):
fired from work and you have disabilities and you're not
able to make it in life, you're not able to
function on a regular basis that you know, a lot
of people become in denial and people with mental health
issues and disabilities, they want to work and they want
to be able to do things, but they can't. They
can't do what other regular people can. So that's why
(20:48):
I always encourage them to just apply. So it's a
simple phone call. And why that date is so important
is because they will get back pay from that date. Specifically,
they'll get a large lump sum whenever they are approved.
And a lot of people decide the first time. You'll
always hear people get denied, but that doesn't mean you
(21:10):
give up because even if they do get approved eventually,
usually people get approved the second time around. You know,
that date of calling is very important. Another thing is
in a lot of communities there are case management services
that will assist you with applying. So that's really your
(21:30):
local agencies that provide mental health or people with disabilities.
They provide resources. You kind of want to reach out
to those people and say, listen, this is what I'm
trying to do. Can you help me? And they'll give
you a number of resources, I mean, even just to
make it through because in those usually it takes two
(21:51):
years to get disability, which is a long time for people,
and in the meantime they cannot work, they can't be
on the book, so they are going to need resources
for food, for money, and that's where those case management
resources will come in. So another thing is is that
I always tell people to have a handy dandy notebook,
(22:12):
and that notebook I want you to put your medication,
your medical appointments, all your diagnosies, your allergies, the medications
that didn't work for you, the surgeries you had, and
that will become key when you are having your interview
with Social Security, which will be a little later on
(22:33):
after you apply, and you may go even before a
judge to declare why you are needing Social Security of
the disability income. So having that notebook is important. Also
getting all of your medical records. You can even drive
your medical records straight up the Social Security because part
(22:55):
of applying for the disability is that the Social Security
will use their doctors and their professionals to evaluate the
person applying to see if they really do have those disabilities.
And when you provide the documentation to those professionals, that
will be helpful to them to say, oh, this is
the proof I have because I was already diagnosed, and
(23:17):
you're kind of doing the work for them and so
that they don't have to take the steps to do it,
and when they're better prepared like that, that's when you
also get approved even closer. So I hope that that
information kind of helps with everybody trying to apply for
disability and the understanding behind it. Other people don't know
(23:38):
the process, and that's where I feel like everybody needs
to kind of have that understanding because they may get
into a situation like this. Families that we deal with,
you know, even Latino families, like we've been taking care
of our own for this long, but we can they
get to a point where sometimes they can no longer
help them and then they hear about the disability or
(24:02):
they never really went through with it, and it kind
of hurts them in the long run. So we try
to educate them as much as possible and so that
their family is set up, because we do see a
lot of families that will hold their people with disability,
their loved ones and their home, and then it comes
(24:22):
to a point where they can no longer take care
of them. Or it was the parents taking care of
their family their family members for so long, but then
they die or something happens to them, and then those
individuals are left with nothing and then it's too late
for them. We try to prepare people in advance so
that is my That is a lot of my take
(24:44):
on the disability. Do you guys have any questions in
regards to that, anything you want me to expand on.
Speaker 1 (24:50):
Well, two things I wanted to answer that. One, I
would just end on to what you were saying, because
everything you said was perfect. Just ending on that. If
any one who's applying for benefits for themselves or for
their dependent or someone they have power of attorney over they,
if they need a translator, that should be provided to them.
First and foremost. They should not be denied services because
(25:12):
they were not provided with accurate translation services. Correct.
Speaker 4 (25:16):
Oh, absolutely, they are entitled to that.
Speaker 3 (25:18):
That's their right, that's right, okay.
Speaker 1 (25:20):
And second is just a little anecdote when my parents
were applying for some services for my sister. This is
a little funny. It's a little not funny. My parents
were there together, my sister and the I don't know
if it was a case manager was he was sitting
right across from my sister and my mother. And my mother,
if the audiences remember, is Western European, Caucasian, red hair,
(25:43):
freckled skin, Irish lady and my father is Salvadorian mostly
some Guatemalans being whatever, but Salvadorian through and through. He's
standing there. My mom is sitting next to my sister,
and the case worker there was there, and they were
asking my sister questions and could clearly not answer, and
they were saying things, well, we need to prove that,
(26:06):
you know, she's unable to do it. My mother and
all of her snark, was saying, have you been fooling
us for twenty four years here? Like just putting turning
to my sister, just flat out saying that, Well, my
sister's just looking at her, and my dad just had
this like what do you do? The manager was not amused.
My dad was scared because he's scared, like, you know,
(26:26):
we're going to be declined because my mother's attitude. But
that didn't happen. But I think my father had that
little overarching like you can't do that, like they could
take away stuff or stuff like that. But my mother
was just like really, like really, she's.
Speaker 4 (26:42):
Yeah, yeah, it's frustrating, especially being in that that assessment
right there, Like I feel like I'm there just hearing
what you described. I can feel the frustration with your
mom trying to advocate for her daughter. So that she
can have her and her needs met, you know, and
(27:03):
then you have that other person you know that's just
working there. Let's be honest. You know a lot of
these Social Security administration professionals, they do not get paid enough,
and you know, you're there in desperate need of something,
and they really you know, that's one thing. Unfortunately, they
just need to be more empathetic towards people and just
(27:25):
have a better understanding of what people are going through.
And unfortunately you're going to get someone most of the
time that is not.
Speaker 1 (27:32):
Yeah, well you've know, you know, my family, my sister
for I don't want to give away our ages, but
like over twenty years time, so you know, you've always
seen my family was very you know, hands on with
my sister. They always went everywhere with her, and like
you know that you know, in our neighborhood. I would
also love to ask thank you so much. I would
also love to talk to Meg. Meg has experienced not
(27:56):
only with working with the population, also how she identifies,
but also genealogy. Meg loves genealogy and yes, so Meg, Meg,
please tell us more and introduce anything you would love
to say.
Speaker 5 (28:16):
Well, I do find it interesting that it was brought
up that North Americans do not say, let's say, be
very accepting of family members with differences, and Latinos do,
because that actually is quite true in my experience. I identify
(28:38):
as a as a person with a disability, and let's
just say, my family was not very accepting, but my
Latino family members were, and.
Speaker 3 (28:49):
It was the same.
Speaker 5 (28:50):
I also have a cousin who is severely autistic, and
he was not accepted very much either. I never saw
him at any family gatherings, the ones I was invited
to anyway. And there's also a history of institutionalization in
my family. I had a great uncle who actually has
(29:14):
the same medical condition I do, and I have to
give his mother credit though she desperately wanted to keep
him home, but my great grandfather refused to live in
the same house as his son, so he eventually was
transferred to an institution and died there. And this was Willowbrook, right, Yes,
(29:40):
it was Willerbrook, And no stories were ever told about him.
I learned most of what I know about him through
my own research. There were no stories. And on my
mother's side, there's the story of a little boy with
polio who died and the way my grandfather spoke about him,
(30:02):
you would think it was his brother, but no, it
was his uncle. So I just thought that that contrast
was interesting.
Speaker 1 (30:10):
Yeah, I agree, and it really breaks me hard hearing that,
But I'm not entirely I'm not surprised. If it wasn't
society in North American culture forcing family members into care
that they were not open to, then it was like
some sort of internal psychology where you know, nothing could
be imperfect, and we don't have to take care of
(30:32):
our own and this is a reflection of us, which
is maddening, to say the very least. To say the
very least, Thank you so much Mike for sharing with that,
because I and one of the novels we are not novels.
The articles we read was I'm not sure if you
had come across this in the Atlantic, but it was
from Jennifer Senior, the ones we sent away. And this
(30:54):
was when Jennifer Senior's mother, it was Jennifer Senior, the journalist.
She was under the impression her mother was an only
child sometime in adulthood. The mother said, she mentioned Adele
the sister, and she was younger, about five or six
years younger than the mother, and I believe they only
(31:15):
had her for about a year or two before she
had to get sent away. The doctor knew about a
year old that Adele. I think they used the word.
Speaker 3 (31:23):
Like, yeah, they said that she was a microsyphalic idiot.
I think that was.
Speaker 1 (31:29):
Yes, it was the medical term h at that time
in the fifties. So Adele went through care and went
through an extremely horrific time at Willowbrook that was documented.
I was telling our panelists before that when I read
the when I read the article, I had to break
it into two days because it was just that heavy.
(31:50):
But one beautiful part of that story was also when
they reconnected, when they wanted to find Adele, and they
wanted to piece together some of the family history, because
sending your family members away when it's not like, for example,
Jennifer Senior's mother whose name I'm forgetting at the moment,
didn't she was looking for her sister. She didn't understand
(32:11):
why her little baby sister she adored was taken away
from her, and it was just not something really spoken
about in the family. And when she finally met up
with Adele, when they found her and the Adele was
later taken away years. Many years later, after Willowbrook, she
was taken in by a Puerto Rican family and like
they were elder, but they they took care of her.
(32:34):
And Jennifer Senior's family was Jewish like Jewish American and
didn't really have any communal ties to the Puerto Rican heritage.
But Adele was raised by a Puerto Rican family, a
leader in life. And when they went to visit her,
Adele was dancing salsa like she knew everything was. She
(32:55):
was so happy she was with her papa, I believe
she called him. She called the husband her father, and
they doted on her. They treated her with that Latino
like family love, and Jennifers like Jennifersonior and her mother were.
They were so happy that Adele had found like was
with a family that loved her. But there was also
that sadness of all the time they lost because what
(33:19):
might have been. And then they noticed things that the mother,
even with the disability present, the mother and Adele had
so many similarities and personality and they would sit next
to show that they had the same body language and commies.
Speaker 3 (33:33):
They both sang and they both did needlework. And yes,
even there was one point where they went to visit her,
and she had made a necklace and the mother had
also made a necklace, and they had walked in and
they were both wearing almost identical outfits because they had
those same habits of their All their clothes always had
to match and the things that they liked to do.
Was like so lovely to see how the habit still
(33:53):
formed within the two of them even though they were
raised apart.
Speaker 1 (33:55):
Yes, and Adele did sadly pass.
Speaker 2 (33:59):
Away, but ahead No.
Speaker 6 (34:00):
What struck me about the article was how the way
that Adele was treated medically impacted the way that her
quality of life was. Like when she was a little child,
as was typical of you know, the fifties the sixties,
they gave her really strong drugs, really strong you know,
tranquilizers or what have you, just like that just narctized
(34:22):
her and made her, you know, mostly nonverbal. All the
medical records are like, oh, she's not responding, well, you know,
she's not learning things. But also you're keeping her drugged
for most of her waking time. But then afterwards, when
she was in middle age and they stopped giving her
these intense, you know, medical stuff, that's when she started
(34:43):
to pick up words. That's when she started to respond better.
And yeah, I mean, my dad's a psychiatrist. You heard
from him earlier this season, and he, you know, makes
a point about how, over the course of his being
a psychiatrist he's seen, you know, over the decades, the
emphasis away from you know, let's pump them full of
(35:05):
drugs and keep them you know, tranquilized, to now, you know,
trying to medicate a little less. And yeah, it's it's
it's just sad to think about how many people's lives
were just you know, drugged out of.
Speaker 3 (35:26):
Yeah, especially when they came across the little girl that
had the exact same diagnosis as Adele, and you saw
what her life could have been if she had been born,
you know, thirty years later, and how her experiences as
a small child. She didn't have any of the same
quote unquote diagnosis, the same display of symptoms that Adele did,
because she had you know, physical therapists come with her,
(35:49):
and she had educators come and had special you know,
access to resources and all these things. And that girl
was born i think twenty fifteen, and her life, who
knows how much she she'll be able to develop. Giving
the modern approach to treatment.
Speaker 1 (36:04):
She was adopted by a family that had older neurotypical children,
if I'm not misunderstanding, and then they adopted the I
just like Adele. And it was hard for the author,
Jennifer Seniors, to see what Adele's life could have been
like if she had had that support in her family
instead of being taken away. At the same time, from
(36:28):
reading the article Jennifer Senior's grandparents, I don't really know
if they really wanted to.
Speaker 3 (36:34):
I think they were just advised, like, this is what
you're going to do, this is what you should do.
And I know that she said that they had a
very difficult time letting her go, So I'm sure if
given the opportunity, they would have probably wanted to keep
her in the home.
Speaker 1 (36:48):
And it makes me wonder, not in the same respect,
but in a parallel respect. Family members that are almost
crossed out or sort of like ridden off as foot
and they could have been anything. They could have been
family members that we were gay, or they could have
been members who were disabled, and they were just sort
(37:09):
of there was a shame or there was deep pain
there or whatever characterize that.
Speaker 6 (37:13):
And how I found one example of that. So I
was looking into my Jewish grandma's side, and she had
a cousin who wrote down all, you know, the family
trees and stuff. And there was one particular cousin who
lived in England who I didn't know anything about, and
in his list they wrote up he wrote next to
her name mongoloid, which is a very ugly word for
(37:36):
how they would describe, you know, the physical appearance of
someone with particular kinds of disabilities. And just you know
that that's pretty much all which I know about her,
And yeah, you just you really think about how you
know someone was stigmatized with this word dismissed and yeah,
(37:56):
I can only you know this person and lived to
her mid fifties. But yeah, I don't know.
Speaker 1 (38:04):
That's actually impressive for the time. Yeah, for the time.
I'm not saying that that's okay, but without proper care,
it was usually a lot earlier. So thank you for
sharing that. I also, we are airing this episode today
because two days ago was Disability Awareness Day on December third,
(38:24):
and we really want to highlight our family members who
may have been erased and what we can do moving
forward and highlight this is one thing Latinos walk about.
You know, we take care for them. They're our family regardless.
Now Latino genealogy is not as us as robust, but
(38:49):
as it grows, so will the history of the family.
That maybe in other cultures would have been forgotten, they
won't be forgotten here.
Speaker 6 (38:56):
And I do have one random example, yes, and I'll
talk about it quickly. So I was digging on my grandfather,
brought a side up and Dan Colombia, and I came
across one record. It was seventeen fifty nine in in Zapatoka, Colombia,
a little town, and it was a burial record, and
(39:17):
they talked about Maria incapaz iha de Bedro de Maria
bays So, an incapacitated daughter, And that's the only record
which I've found about her, and I wonder, it's like,
you know, what was her life like in seventeen fifty
nine and earlier. You know, maybe presumably or family took
(39:38):
care of her. But yeah, I mean that's that's a
very harsh way of describing her. And I've never found
another record quite like that. So yeah, I just I
just have to wonder what there.
Speaker 1 (39:51):
It's like you either get completely offensive or completely infantalizing.
Speaker 4 (39:58):
To them back then, like those names were normal, you
know what I mean to us, it's a little shocking,
but that's what they called their their love once. I
think that it was just normal.
Speaker 6 (40:11):
For them back then, and also too, that doctors would
have medical terms like idiot more on what we now have.
Insults back then were diagnostic terms, which just blows my mind.
Speaker 1 (40:22):
You know, I think imbecile is one of them.
Speaker 6 (40:24):
Imbecile too, yeah.
Speaker 1 (40:26):
Which is like insane. I feel like twenty years ago
we were finally starting to accept the fact that you
shouldn't say the R word that I'm not going to repeat, But.
Speaker 3 (40:34):
Even that's a medical diagnosis. Like I work in OBEA
Administration ep cetrics and gynecology, and the term for when
the baby is not growing today we say it's interuterine
growth restriction, and twenty years ago it was interuterine growth
retardation and they changed the termino because it's a medical term.
It means you are slow compared to your peers. So
(40:56):
even that, like it's not just an insult that kids
throughout each other, like it actually means slow.
Speaker 1 (41:02):
Yeah, no, no, it was. It was medically accepted for
a long time then. I feel like in the early
two thousands they were starting to see maybe not maybe,
shouldn't do this anymore? Thankfully. Yeah, I guess please.
Speaker 5 (41:15):
I have paperwork actually that says that on it. So
it's still within my lifespan.
Speaker 1 (41:23):
With describing yourself. Yep, that I'm sitting here shell shocked.
What wow, I'm so angry for you.
Speaker 4 (41:34):
Yeah, the last, I would say, the last, I want
to say the last. Well, we're going to fifteen years.
The DSM, which is the dynastic manuel for disorder diagnosing people,
has changed. But yes, I would agree with her that
at least the early two thousands they were still using
(41:55):
that terminology, so that does make sense.
Speaker 2 (41:59):
My gosh, well, I'm glad we're learning slowly but surely
to move past that. Right, Like, that's insane.
Speaker 1 (42:08):
Let me ask because anyone I know? Meg had mentioned
her family member in Willowbrook, But has anyone found in
their Latino Country research any any like institutions, because I
have not found any.
Speaker 3 (42:22):
And when we were reading our book, The Cemetery of
Untold Stories, when they mentioned the the home for the
resources that they now have for people with dementia, they
were also shocked that, oh my goodness, in a Latino
Country and the Dominican Republic, there's actually like institutions for
people like it was such a foreign concept that I
was thinking of that just now that it is. It's
such a foreign concept to even have somewhere to send
(42:45):
people who you are no longer capable of caring for it.
It was they mentioned that non number of times in
the book that it was just such a shocking thing
to even know that these exist.
Speaker 2 (42:55):
Yeah, that was shocking to me as well as a Dominican.
I was just like, Oh, I realized we had nursing homes,
and I was just like, oh, but I guess that
makes sense, but yeah, and I can imagine, Oh, go ahead.
Speaker 4 (43:06):
Really, it really depends on where you are if you're
speaking about the United States, because not many places have,
you know, resources like that. For instance, New York, New
York is one of the highest places for mental health
and for resources. I relocated to Florida and was hook
(43:27):
awakened by the lack of resources they have here for
people with disabilities. It has improved in the last ten
years that I've almost been here that long, but it's
still like, depending I think you are, where you are
in the country, they have those type of resources. It's
not everywhere, so of course, like it would be hard
(43:48):
for you to know something like that exists, but you know,
it depends on where you are because around the country
they do not have places like that or the resources.
Speaker 1 (43:59):
And actually will lil I specifically remember having a conversation
with you about you know, I think we were talking
about like when my parents retire, like if they would
ever move out of New York because it's getting expensive,
and you were saying something like they could always consider Florida,
it's more cost effective. But then you sat there for
a second and you said, no, they said, you said
(44:19):
they should not move here because and you said, if
there's anything if someone misunderstands, and if your sister has
some sort of outburst and no one understands, she's going
to get bak corrected. Yeah, And I was like, and
that's where that conversation ends right now.
Speaker 4 (44:34):
Yeah, exactly, And that's where the lack of resources comes in,
like there's just there's no place for your sister here.
And I'll be honest with you, like people don't realize
that when they relocate. I want to discuss this more
when we talk about the military, because a lot of
people face that wherever they move, wherever they're branch, they're
new branches, they have they are forced to relocate for
(44:56):
their job, but the resources that they have someone disabled
sometimes are not there. And the military, the government is
I can't even help them. So yeah, imagine when you relocate.
What I found is you have to do your research
before you move anywhere if you have someone disabled and
if you have medical issues, because you want to know
(45:18):
the resources in that area and how they treat people
in that area with those disabilities, because it may not
be as easy to get a hold of those resources
anywhere you know where you are comfortable and you have
those resources. I always tell people, like, it's better than
trying to go find them somewhere else. But if you
(45:40):
do the research and they do have it, great, But
people have to do their research. I have so many
people that relocate here retical Sunshine State or because you
know it's affordable or what have you, but then their
loved ones are suffering because the resources aren't there.
Speaker 1 (45:57):
That's so far.
Speaker 5 (45:59):
In the question of if you're even allowed to move,
Like I am not eligible to immigrate to Australia or
Canada for example, because according to their government, I would
be a burden on their healthcare system.
Speaker 4 (46:15):
Right right, So yeah, I believe that. Unfortunately, you know,
we can't really speak for other countries. That's what they do,
and you know their government system and why we don't
know the history, like I would love to know the
history behind that and why that that doesn't even exist now,
you know, times are changing, so I still have hope
(46:36):
that they would change that, but there's something there for
their history to put that in place. Unfortunately, and you know,
we need to know why we need answers, and nowadays
people are getting those answers and are changing.
Speaker 3 (46:55):
Thank you so much.
Speaker 1 (46:56):
I wanted to also before tam my mother's side of
the family, I would I would love to also discuss
some you know what, actually does anyone else have something else?
Before I bring up my notes?
Speaker 2 (47:09):
There there are stigmas I think, I mean probably right
like in old cultures for people who are differently able.
So despite I think like even a family's love, rite
and acceptance and just really sort of like you know,
hugging and enveloping that person, even the larger society can
(47:31):
can can still you know, write like be discriminatory. So
for example, one of my dad's sisters was born with
a deformed arm, like her hand is like it's literally
like a small I don't know what the what the
diagnosis or the term is, so I apologize. But she's
(47:53):
literally the most intelligent person in the family. She went
to school, she has as j D in the Dude
to Republic, and yet she has not been allowed to
she has not been allowed to really sort of like
flourish right as a person, as a professional. At one
point she was a teacher as well, and you know,
(48:16):
sort of like well everyone benefited right again from from
her just being an amazing and awesome person, but she
has gotten passed passed over, passed on past what is it?
What's the term passed over passed over for jobs?
Speaker 1 (48:33):
And that's what I would love to jump into.
Speaker 2 (48:34):
Yeah, because just because of that, like you know, I
don't want to say the term like well, because of
you know, her, her her arm didn't develop the way
that it was supposed to. So yeah, that's just like
horrible discrimination.
Speaker 1 (48:48):
Absolutely And one I actually, as I was speaking, I
remember meeting a family member in Al Salvador and he
I'm not going to I'm not going to give his
ama oult but he he is what was deformed, very
hard time walking, and it was very visible. And they
in no one asks for money. They just kind of
(49:09):
mention if they're hungry or if they're struggling, you know,
and then it's just in our like you know, we feed,
you know, we do it, and we don't think twice.
It's not like America at all. So when I was
I was thinking of him, and I was saying that,
and I was doing research on this, and to Johnpon,
Wafausto said, only thirty seven percent of working age Latinos
(49:29):
with disabilities are employed in the United States compared to
seventy three point nine percent of working age Latinos without disabilities.
It is literally half Jesus. So that is another way
we will not be be able to find our ancestors
if no one was giving them jobs. This is true,
So we can't find them in censuses on certain job records.
(49:50):
And it's like it's just one way. It's okay. As
we've discussed this podcast before, it's harder for Latino genealogy,
and here's another reason why it's harder. But but we're
making an effort to not forget to spotlight on it
and to move forward with it to you know, what
we can do cycle breakers, you know, breaking stigma. From
(50:11):
what I read, there is a common manifestation of social
stigma and the Latino community. And it's like it's almost
like the reverse of what we were saying is and
I think it was written by an American, but that
you were saying that a person with the disability is
seen as a famili's problem, for better or for worse.
It's not you know, stays with our own YadA YadA,
(50:32):
but don't provide help. It's like their specific issue. And
then within the family like we take care of our own, which,
as we've said, is the truth, but it must be
hard living in a family culture that really supports their
own family in an in a community, in a society
that does not reflect that values at all. So it's like,
you want to take care of your family member, you
want to provide the best services, You want them to
(50:53):
stay with you as long as possible to help them flourish,
and you were surrounded by a society that does not
encourage that and wants to remove a blemish. Just say
that pretty, but actually I would also love to sometimes
I don't know if this has been true in your families,
but sometimes families may limit the individual's contact with the
outside world for protection, not because it's shame, but to protecting.
(51:17):
Are you here, Yeah, that's what you've seen, Lilian.
Speaker 4 (51:20):
Yeah, absolutely, sharing all this like it's that's my mindset.
Unfortunately it's that protection, but at the same time it
hinders them and the family is looking at it like
as they're protecting them, but at the state like they've
seen probably their family members discouraged from being out there
(51:42):
or you know, told they couldn't do this that There
are some families that will fight for no end, especially
cultural families that I've seen. Those people are relentless and
they will go through hoops to get their luck once
the things that they need and will fight for them.
But unfortunately, we do have those families that just kind
(52:04):
of want to they don't want they don't want to
speak up, and then that hinders the person as well.
So I have seen both sides.
Speaker 1 (52:12):
On a positive note, I would love to just spotlight
some of our famous Latinos with disabilities, and I think
the first one that comes to all of our mind
is Frieda Callo.
Speaker 2 (52:23):
Ye.
Speaker 1 (52:24):
Yes, she had polio as a child and she was
in a horrible bus accident, but she did not shy
away from that at all. She was very proud and
she put that in her paintings, and she put things
that made other people uncomfortable and they were some of
the most beautiful pieces of art we've ever seen. So
always shout out to Frieda. Also, there's Uh, there's Julian Mercado.
(52:50):
She has and I'm surprised this is a medical term still,
but spastic musculars is the spastic. I think we don't
use that anymore. That's but she had muscular dystrophe. Salama
Hayek is actually dyslexic with ADHD and she discusses that
a lot. How there were opportunities taken from her and
childhood was hard because nobody would or she had a
(53:12):
hard time getting accommodations for her learning disability or not
learning differences, I should say, But she is very proud
and she talks about that a lot. There is celebrity
Lauren riddallt Ridloff, and she's deaf. And Sophia Girau, who
I believe is Puerto Rican and maybe Brazilian. She has
Down syndrome and she's a model. Wow. She is And
(53:34):
actually a more recent example is Selena Gomez. She has
lupus and she had her kidney transplant. She has autimmune disease, anxiety, depression,
bipolar disorder. But she's been very open about this and
she's been open about getting the care that everyone needs.
And I'm really happy that we have some I don't
(53:54):
want to say role models because that puts a responsibility
on their shoulders.
Speaker 3 (53:57):
Examples.
Speaker 1 (53:58):
He has examples and representation of like thriving and being
able to call out, call out the crap you went through.
Please put it on the table. We're here for it, okay,
and we do not deny anyone's experience there. So that's
what I have for this. But does anyone else have
(54:18):
anything to add or mega lil you guys good? Do
you have anything else to want to add?
Speaker 4 (54:24):
Hey?
Speaker 6 (54:25):
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(54:45):
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Speaker 1 (55:05):
All right, well, thanks so much for joining us. Everybody,
Thank you, thank you,
Briar Rose here from the Rediscovering Latini Dot podcast. Are
you a Latina parent working to break cycles in your family?
Do you struggle with managing your relationship with relatives? Are
you looking to heal the intergenerational trauma that you grew
up seeing in your family? Then check out as Kualita
by Lax Parenting. You'll find powerful workshops to help you
(00:34):
on your journey, like Crime, which is all about reparenting
ourselves and learning to heal the wounds we may carry
from childhood to keep us from projecting those wounds onto
our children. You can also find the workshop Ami Manira,
all about how to have difficult conversations and set healthy
boundaries with other adults in our lives with the holidays
(00:56):
and family get togethers around the corner. I highly recommend
checking this out. There are so many inspiring workshops for
you to choose from. To learn more, go to www.
Dot latinxparenting dot org slash Escunita. That's www. Dot latinxparenting
dot org slash Eskunita. Welcome back everyone, Welcome back. Hey,
(01:27):
this is season five, episode twelve of Rediscovering Latini Dad.
My name is bri Rose.
Speaker 2 (01:32):
I'm Fausto, I'm that word and I'm Lisa.
Speaker 1 (01:35):
And on today's episode, we will be discussing a disability
in our family tree. Thank you, And today we're very
lucky to have our panelists Meg to join us. Meg.
Hi guys, Hi Hi way, So we are super excited
about this episode. It's going to be heavy, but it's
really interesting and really important. So does anyone want to
(01:56):
start off? We for context, I did send around an
article to our our co host and panelists, the ones
we sent away by Jennifer Senior, because it just touched
my heart in a whole way. And I'm not sure
if anyone else wants to star first you guys, good
or else? I can start reading something I wrote to.
Speaker 2 (02:18):
You go for it, Okay.
Speaker 1 (02:21):
So this is usually I'm getting my I'm dipping my
feet in writing a little bit because I was always
in awe of Feusto's essays, and to be fair, I
am not there. I am writing blurbs. We're going to
graduate to that baby steps, baby Steps, But I wanted to.
I wanted to, I wanted to say something in reference
(02:44):
I have just for transparency purposes. I am I have
a sister with severe autism. And what is previously known
as mental retardation. I believe now it is called intellectual disability.
And she's two years and eight months younger than me,
although I swear she still looks like she's sixteen years old.
(03:08):
So I have something I would love to share for Natalie,
my sister, and my ancestral copilot. You have seen the
world through a lens I could never comprehend. You have
an unconditional love and understanding of the world's rights and wrongs,
which is primal and a gift in its own right.
You have grown in a home and family and a
village of extended family, hearing two languages spoken around you,
(03:30):
but learning one. You are our father's our father's twin,
and in face and in stubbornness. You may not visit
Alsavador or understand the past the way I wish I
could share with you, along with the many things I
wish we could have shared and discussed in our lifetime together.
But you will always be a little Wanaquita, like me,
(03:51):
like little Nora. I see you got the love of
dancing from our dad, and so did Nora. I did not.
Maybe one day we could share papooses and just for
a moment we could share music, food, and be fully
present together in our heritage. As simple as it is,
you are an important member of our familia. Sorry, your
personality and legacy thumbprint is in our hearts, on the
(04:14):
family tree and will never be lost with the passage
of time. I haven't always understood. I've had a lifetime
struggling with conflicting feelings, but I've always loved you, and
I've taught Nora to love and extend the endless arm
of empathy. With pride, guiltiers, and a lifetime tapestry of love.
We will honor you and our ancestors today.
Speaker 2 (04:36):
I don't know.
Speaker 3 (04:36):
That was beautiful.
Speaker 2 (04:37):
Yeah, this was really beautiful. Thank you for sharing. Thank
you guys.
Speaker 1 (04:42):
But I am not the only one here who has
a heritage with family members with disability or have a
disability just you know, in their line or in their
media family or their friends. We all have our own
histories here, so I'd love to hear from our co
host panelists, whoever wants to start. Okay, I'm alerting Posto.
Speaker 2 (05:05):
Because yeah, so, I thank you so very much for
reading that Buyer. That was really really beautiful, and it
really reminded me of my cousin Maria, who we call
Maggie in the family, So Maggie would I actually don't
(05:28):
know how much older she is in me, but I
want to say she's probably in her late fifties, if
not sixties by now. But growing up, so, Maggie is microsophatic.
I guess I should I should say right when her
mother was pregnant with her, her mother received some sort
(05:50):
of like shot that she wasn't supposed to, and so
that caused the baby not to develop fully, and so
she's nonverbal, although she does try to speak and communicate
her in her own way. You know, she also has
intellectual disabilities. I think growing up, the way that my
(06:13):
mom would explain it was like, you know, she may
be an adult, but she has the mind of a child.
And so yeah, So Maggie and I were just like
road dogs when I was a little kid. I don't
know why I like felt this like connection with her,
(06:34):
but whenever they would come over and visit, like she
and I would like literally always always play together. I
like to think that I, at some point, at the
very least, was Maggie's favorite person. I think she was
definitely my favorite person and so yeah, so like we
would just I think like the family as well, right,
would would make comments about like this is so interesting
(06:57):
that like Fausto and Maggie are like each other's best friends.
And yeah, it was, it was. It's been a really
great it's been a really great experience. She is all heart.
She literally is just one of the most loving, caring
people that you will ever meet, in addition to being
a little bit of a breadth. But you know, I
(07:17):
think she she she deserves it. But I haven't seen
Maggie since since the pandemic. Actually, right, her mom now,
her mom is my dad's aunt, and you know, her
mom is now a little bit is advanced in age,
and she herself is like suffering from dementia. So there's
(07:37):
a lot of things that obviously she doesn't like remember,
and so I'm trying to protect them, right, Like we
haven't seen them. I myself haven't seen them in a
couple of years. But but yeah, Maggie, you know this
is this is for Maggie, right, Like this episode is
dedicated to those family members of ours who have a
different who have different brains, right and different and abled
(08:01):
abled bodies. But yeah, no, I love myself. So, Maggie,
I love.
Speaker 1 (08:06):
There's a new term going around that I hear.
Speaker 2 (08:07):
It's called neurospicy, neurospicy, and I like that, and I
think that that's exactly what she is. That is exactly
what she is. And she and I again like I
don't know how would literally share secrets. Somehow we would
communicate and we would figure it out. And she also
has like names for everyone, so yeah, she she just
(08:28):
calls everyone by by a name. So oftentimes for us
little ones because in the Dominical Republic we call children
chi chi, and so she would call us tty. So yeah,
so whenever she needed to speak to us, to anyone
about one of us, she'd be like ty and like point,
you know, point at whichever one she she was talking about.
Speaker 1 (08:49):
But yeah, it's amazing how they, at least for our
family members that I'm specifically speaking about, they have they
have their own words and mannerisms where you learn really quickly,
You're like, Okay, she's getting pissed off. Yeah, exactly that
she's gonna start asking for that soon. Like you just
learn like really quickly. It's like your own like language.
And I feel like that imprints into our family. You know,
(09:10):
it's a learned language and it's sweet, and it's different
for every family, different for every member. And sometimes you know,
what my sister may call somebody in the four walls
of our home maybe very different. You know, she may
call them outside when we're at family parties. But I
(09:31):
have to say with our family, I mean before before
Natalie was diagnosed, I don't think and I was about
five years old when she was diagnosed, and she was
about two, and at the time, autism was like one
in ten thousand. It was mostly boys. In fact, my
mom had to fight for the diagnosis because they were like,
this is just not a girl thing, this is just
(09:52):
all boys. And now we know from current research that
autism and girls presents very differently. But at the same time,
like the severity would have like they would have caught
that earlier anyway. So my mom always told me one
of the hardest things for her was, you know, for
when she had a five year old and a two
year old, you get yourself ready for the five year
old going to school. You know, you're getting ready. You're okay,
(10:14):
my five year old's going and we're you know, we're
gonna get ready for kindergarten. We're to get on the bus.
You're gonna go on, you know, with the teachers. And
I was a child that I was raised like not raised.
I'm not for my parents make it upset. My parents
were working parents, and my maternal grandmother watched me and
eventually my paternal grandmother when she came to the United States.
(10:35):
But I was surrounded by a million cousins at my
nana's house, including Natalie. So that's I didn't have a
structured school environment. So they got ready for that. That like,
she's turning five in May, and then September, like you know,
there was a thing all of a sudden, my sister
summer before I start kindergarten, she's diagnosed with severe autism.
(10:56):
And my mom said, one of the hardest things was
you prepared yourself for the five year old, but you
didn't prepare yourself putting the two year old on the
bus for a new school, specifically for her. So I
get like, as a parent now, I'm like, yeah, that
sounds incredibly hard because you're not development any ready. You're
not developmentally ready for the two year old. You know,
(11:18):
the two year old has time. You have time to
prepare yourself to transition that child, but not in my
mother's case, So so that that was one thing. But
with our family, I've spilt a fairmenitea by my family.
But I have to say on my Latino side, specifically,
no one has ever been cruel to my sister. Maybe
(11:39):
not understood all of her outbursts or when she would attack,
if she was in sensory overload or things, or her
routine was messed up, but never a judgment. I have
to say that I will give full credit where that
is due.
Speaker 3 (11:54):
Because it doesn't mean I'm going to race anything else.
Family think there's always one. Like my mother had a
cousin that was the same age as her, who today
we would say she was severely autistic. She was practically
nonverbal except for a handful of words, and she would
lash out, and she had all of these but she
was home. She was home with all the other cousins,
she was raised altogether. They never put her somewhere else.
(12:14):
I think every family has somebody like that, So when
you encounter it, like even Fausto mentioning, I didn't even
think of her when we were doing the research for this,
and as you were talking about Maggie. I was like,
oh my god, Yerira, my mother would talk about her
and in just the same way. The two of them
are like two peeds in a pod, and they were
born just a few months apart, and so they but
they were in a world's apart in part the terms
(12:36):
of their development. But just hearing that, it all suddenly
came to mind. I think every family has somebody like that,
and so when you encounter someone else, it's like, oh,
that's fine, that reminds me of something. So it's always
come up like everyone's got experience with it.
Speaker 1 (12:49):
Hey will, Hey, hey. I would love to introduce Lillian, who,
if our audience remembers, Lillian joined us for our episode
on conflicts in the family a couple of season ago.
You know when we just like threw the tea right
on the table and if it burned anyone, that was
their problem. So Lilian, I'm so excited is back to
(13:12):
discuss disability and Latino family is Lilian. Thank you for joining.
Speaker 4 (13:18):
No Proble, Thank you for having me, welcome back.
Speaker 1 (13:21):
Thank you so yeah. So, Delissa, I would love to
add on to what you were experiencing with your family
and your your members, and then we can go to
Edward Meghan Lillian and then discuss the novel and some research.
Speaker 3 (13:34):
Sure, I can't think of anything else I had. I
was the spur of the moment because I honestly hadn't
even thought of her while we were doing all this
research reading the article. It didn't even occur to me
until just this moment. I had to even look up
my dream, like what was her name? My mom used
to talk about her all the time, and she was
found mouth and would swear like she maybe had one
hundred words in her vocabulary, but half of them were
(13:55):
swear words, and she said that yeah, important ess and
you know, and tell people to stop or she would
kind of lash out and whatnot. But she was always
in the home with them. They never put her in
an institution. They I'm pretty sure she passed early in
her life, but it was never She was never stigmatized
by the family. She was always in the same environment.
(14:16):
She grew up with all the cousins. And I think
that's why I think, in general, let's say, like Latinos
have a lot of sympathy or empathy for when they
come across that in other facets of their life, because
everyone's got a cousin. Everyone's got a niece or a nephew,
or a story of somebody in the family that had
an intellectual disability.
Speaker 1 (14:34):
And I would love to really expand on that for
some research. From what I'm realized from when I research
I've done, is that Lily, and please correct me if
I'm wrong, please keep hold me accountable. But Latino family members,
Latino family members do tend to keep their disabled or
impaired family with them as long as possible, no matter
(14:54):
what it is in our blood. We don't give up
on our own and it's also badly if you do so,
even if you do need help, you're aging, or the
older parent has some sort of impairment that they can't
take care of them anymore. In my experience from what
I've seen and heard around me, is you're gonna have
(15:15):
to pry that child away from them, sorry not child,
that individual away from that family because everyone wants to
take care of them. And I have actually found in
my own family we're very lucky. My father has a
wonderful hearted cousin who lives very close to us, and
when we needed things like my sister needed batteries at
(15:35):
or band aids, at my wedding and like she like
the shoes were hurting her and all the things we
were preparing, we forgot band aids because so my aunt
came with band aids to the wedding and she was wonderful.
And then when my sister didn't want to leave the
car at my baby shower and everyone's inside the little
(15:56):
VFW hall and she just didn't want to leave the car,
my aunt would go out there and just spend time
with her, and like you know, sometimes she gets her
things like pure Like it's very much a leaned in,
interdependent like family dynamic that like it stays there. And
I'm really grateful for that because I don't know, this
is just me shitting on North Americans right now, but
(16:18):
in some ways I feel like we've lost that in
this It's a very too self reloiant culture to our own,
like we won't admit when we need help, which is
when we will just be We will discuss mental health
next season with Lily and hopefully, but this episode is
for disabilities. Uh So, Lilyan, what has your experience been
working with the population. Am I correct or do you
(16:39):
have a totally different.
Speaker 4 (16:40):
You are right on point. I mean, honestly, do you
have to come You have to think about the cultures
that we come from. In other countries, there is no disability,
there is no income. People have to deal with their
families no matter what they take of them. They step
(17:01):
up to the plate like your family did at the time,
and needy, they just they will take over. And that's
what family does. And with somebody who's disabled, they tend
to be extra protective, yes, excellently, and that's that's that's
where we come from. That is where a lot of families.
(17:21):
Latino families are very family oriented and they will step
up to the plate in that aspect, like little things
like that, they will completely take over. So everything you
guys talk about is exactly what I've experienced in the field.
A lot of people. What happens is they have to
(17:42):
be educated, so they get into a certain situations where
they end up in the hospital, they end up in
the system. That's when they tend to learn about these
things like disability or guardianship. And there's a legal standpoint
because here and then United State, their loved ones have
(18:02):
their rights. A lot of our culture don't believe in medication.
We didn't come from that that was something back in
the day that people did without. But nowadays you know,
they're seeing the improvement with that and it is important
for stabilization, and families are becoming a little more open
to it, which is good.
Speaker 1 (18:23):
Well I have to just to asside step on that
for a second. I have definitely had conversation with Festa's
husband Rory, about how in some families where if you
say you have mental health issues, they're like, no, you
just need Jesus, yeah.
Speaker 4 (18:39):
Goat got yes, oh my gosh. And my family is death.
I come from a religious background, so my family, when
certain diagnosis is started happening in my family, they were
very against it and they had to be educated. So
what I would just like to educate people on is
(19:00):
how to do disability. So the first thing is how
to apply for disability. It is literally a simple phone call.
You call and you write down the date somewhere because
that date will be very important in the future. What
happens is they do an intake kind of assessment on
why you're applying for disability, and they'll go through kind
(19:21):
of all your issues and basically what the Social Security
Administration wants to do is prove that you cannot work,
so you cannot work. You know, there's people with mental health,
like they have a problem just getting out of their
car and going into the store, and what feelings are
they experiencing when they cannot do that. That's what they
(19:44):
need to express to social Security so that they have
an understanding, you know, and social security unfortunately, there's a
lot of people working in social security. Let's face it,
you never know who you're going to get on the phone,
and they're just they're just taking the in information in.
So you have to be I tell my clients to
(20:04):
really go deep with their experiences because it's really getting
that person on the other phone on the other line
to understand who they are as a person and what
their struggles is. So the first thing is I always say,
is to make that phone call. It doesn't hurt if
you are struggling to find work or you keep getting
(20:25):
fired from work and you have disabilities and you're not
able to make it in life, you're not able to
function on a regular basis that you know, a lot
of people become in denial and people with mental health
issues and disabilities, they want to work and they want
to be able to do things, but they can't. They
can't do what other regular people can. So that's why
(20:48):
I always encourage them to just apply. So it's a
simple phone call. And why that date is so important
is because they will get back pay from that date. Specifically,
they'll get a large lump sum whenever they are approved.
And a lot of people decide the first time. You'll
always hear people get denied, but that doesn't mean you
(21:10):
give up because even if they do get approved eventually,
usually people get approved the second time around. You know,
that date of calling is very important. Another thing is
in a lot of communities there are case management services
that will assist you with applying. So that's really your
(21:30):
local agencies that provide mental health or people with disabilities.
They provide resources. You kind of want to reach out
to those people and say, listen, this is what I'm
trying to do. Can you help me? And they'll give
you a number of resources, I mean, even just to
make it through because in those usually it takes two
(21:51):
years to get disability, which is a long time for people,
and in the meantime they cannot work, they can't be
on the book, so they are going to need resources
for food, for money, and that's where those case management
resources will come in. So another thing is is that
I always tell people to have a handy dandy notebook,
(22:12):
and that notebook I want you to put your medication,
your medical appointments, all your diagnosies, your allergies, the medications
that didn't work for you, the surgeries you had, and
that will become key when you are having your interview
with Social Security, which will be a little later on
(22:33):
after you apply, and you may go even before a
judge to declare why you are needing Social Security of
the disability income. So having that notebook is important. Also
getting all of your medical records. You can even drive
your medical records straight up the Social Security because part
(22:55):
of applying for the disability is that the Social Security
will use their doctors and their professionals to evaluate the
person applying to see if they really do have those disabilities.
And when you provide the documentation to those professionals, that
will be helpful to them to say, oh, this is
the proof I have because I was already diagnosed, and
(23:17):
you're kind of doing the work for them and so
that they don't have to take the steps to do it,
and when they're better prepared like that, that's when you
also get approved even closer. So I hope that that
information kind of helps with everybody trying to apply for
disability and the understanding behind it. Other people don't know
(23:38):
the process, and that's where I feel like everybody needs
to kind of have that understanding because they may get
into a situation like this. Families that we deal with,
you know, even Latino families, like we've been taking care
of our own for this long, but we can they
get to a point where sometimes they can no longer
help them and then they hear about the disability or
(24:02):
they never really went through with it, and it kind
of hurts them in the long run. So we try
to educate them as much as possible and so that
their family is set up, because we do see a
lot of families that will hold their people with disability,
their loved ones and their home, and then it comes
(24:22):
to a point where they can no longer take care
of them. Or it was the parents taking care of
their family their family members for so long, but then
they die or something happens to them, and then those
individuals are left with nothing and then it's too late
for them. We try to prepare people in advance so
that is my That is a lot of my take
(24:44):
on the disability. Do you guys have any questions in
regards to that, anything you want me to expand on.
Speaker 1 (24:50):
Well, two things I wanted to answer that. One, I
would just end on to what you were saying, because
everything you said was perfect. Just ending on that. If
any one who's applying for benefits for themselves or for
their dependent or someone they have power of attorney over they,
if they need a translator, that should be provided to them.
First and foremost. They should not be denied services because
(25:12):
they were not provided with accurate translation services. Correct.
Speaker 4 (25:16):
Oh, absolutely, they are entitled to that.
Speaker 3 (25:18):
That's their right, that's right, okay.
Speaker 1 (25:20):
And second is just a little anecdote when my parents
were applying for some services for my sister. This is
a little funny. It's a little not funny. My parents
were there together, my sister and the I don't know
if it was a case manager was he was sitting
right across from my sister and my mother. And my mother,
if the audiences remember, is Western European, Caucasian, red hair,
(25:43):
freckled skin, Irish lady and my father is Salvadorian mostly
some Guatemalans being whatever, but Salvadorian through and through. He's
standing there. My mom is sitting next to my sister,
and the case worker there was there, and they were
asking my sister questions and could clearly not answer, and
they were saying things, well, we need to prove that,
(26:06):
you know, she's unable to do it. My mother and
all of her snark, was saying, have you been fooling
us for twenty four years here? Like just putting turning
to my sister, just flat out saying that, Well, my
sister's just looking at her, and my dad just had
this like what do you do? The manager was not amused.
My dad was scared because he's scared, like, you know,
(26:26):
we're going to be declined because my mother's attitude. But
that didn't happen. But I think my father had that
little overarching like you can't do that, like they could
take away stuff or stuff like that. But my mother
was just like really, like really, she's.
Speaker 4 (26:42):
Yeah, yeah, it's frustrating, especially being in that that assessment
right there, Like I feel like I'm there just hearing
what you described. I can feel the frustration with your
mom trying to advocate for her daughter. So that she
can have her and her needs met, you know, and
(27:03):
then you have that other person you know that's just
working there. Let's be honest. You know a lot of
these Social Security administration professionals, they do not get paid enough,
and you know, you're there in desperate need of something,
and they really you know, that's one thing. Unfortunately, they
just need to be more empathetic towards people and just
(27:25):
have a better understanding of what people are going through.
And unfortunately you're going to get someone most of the
time that is not.
Speaker 1 (27:32):
Yeah, well you've know, you know, my family, my sister
for I don't want to give away our ages, but
like over twenty years time, so you know, you've always
seen my family was very you know, hands on with
my sister. They always went everywhere with her, and like
you know that you know, in our neighborhood. I would
also love to ask thank you so much. I would
also love to talk to Meg. Meg has experienced not
(27:56):
only with working with the population, also how she identifies,
but also genealogy. Meg loves genealogy and yes, so Meg, Meg,
please tell us more and introduce anything you would love
to say.
Speaker 5 (28:16):
Well, I do find it interesting that it was brought
up that North Americans do not say, let's say, be
very accepting of family members with differences, and Latinos do,
because that actually is quite true in my experience. I identify
(28:38):
as a as a person with a disability, and let's
just say, my family was not very accepting, but my
Latino family members were, and.
Speaker 3 (28:49):
It was the same.
Speaker 5 (28:50):
I also have a cousin who is severely autistic, and
he was not accepted very much either. I never saw
him at any family gatherings, the ones I was invited
to anyway. And there's also a history of institutionalization in
my family. I had a great uncle who actually has
(29:14):
the same medical condition I do, and I have to
give his mother credit though she desperately wanted to keep
him home, but my great grandfather refused to live in
the same house as his son, so he eventually was
transferred to an institution and died there. And this was Willowbrook, right, Yes,
(29:40):
it was Willerbrook, And no stories were ever told about him.
I learned most of what I know about him through
my own research. There were no stories. And on my
mother's side, there's the story of a little boy with
polio who died and the way my grandfather spoke about him,
(30:02):
you would think it was his brother, but no, it
was his uncle. So I just thought that that contrast
was interesting.
Speaker 1 (30:10):
Yeah, I agree, and it really breaks me hard hearing that,
But I'm not entirely I'm not surprised. If it wasn't
society in North American culture forcing family members into care
that they were not open to, then it was like
some sort of internal psychology where you know, nothing could
be imperfect, and we don't have to take care of
(30:32):
our own and this is a reflection of us, which
is maddening, to say the very least. To say the
very least, Thank you so much Mike for sharing with that,
because I and one of the novels we are not novels.
The articles we read was I'm not sure if you
had come across this in the Atlantic, but it was
from Jennifer Senior, the ones we sent away. And this
(30:54):
was when Jennifer Senior's mother, it was Jennifer Senior, the journalist.
She was under the impression her mother was an only
child sometime in adulthood. The mother said, she mentioned Adele
the sister, and she was younger, about five or six
years younger than the mother, and I believe they only
(31:15):
had her for about a year or two before she
had to get sent away. The doctor knew about a
year old that Adele. I think they used the word.
Speaker 3 (31:23):
Like, yeah, they said that she was a microsyphalic idiot.
I think that was.
Speaker 1 (31:29):
Yes, it was the medical term h at that time
in the fifties. So Adele went through care and went
through an extremely horrific time at Willowbrook that was documented.
I was telling our panelists before that when I read
the when I read the article, I had to break
it into two days because it was just that heavy.
(31:50):
But one beautiful part of that story was also when
they reconnected, when they wanted to find Adele, and they
wanted to piece together some of the family history, because
sending your family members away when it's not like, for example,
Jennifer Senior's mother whose name I'm forgetting at the moment,
didn't she was looking for her sister. She didn't understand
(32:11):
why her little baby sister she adored was taken away
from her, and it was just not something really spoken
about in the family. And when she finally met up
with Adele, when they found her and the Adele was
later taken away years. Many years later, after Willowbrook, she
was taken in by a Puerto Rican family and like
they were elder, but they they took care of her.
(32:34):
And Jennifer Senior's family was Jewish like Jewish American and
didn't really have any communal ties to the Puerto Rican heritage.
But Adele was raised by a Puerto Rican family, a
leader in life. And when they went to visit her,
Adele was dancing salsa like she knew everything was. She
(32:55):
was so happy she was with her papa, I believe
she called him. She called the husband her father, and
they doted on her. They treated her with that Latino
like family love, and Jennifers like Jennifersonior and her mother were.
They were so happy that Adele had found like was
with a family that loved her. But there was also
that sadness of all the time they lost because what
(33:19):
might have been. And then they noticed things that the mother,
even with the disability present, the mother and Adele had
so many similarities and personality and they would sit next
to show that they had the same body language and commies.
Speaker 3 (33:33):
They both sang and they both did needlework. And yes,
even there was one point where they went to visit her,
and she had made a necklace and the mother had
also made a necklace, and they had walked in and
they were both wearing almost identical outfits because they had
those same habits of their All their clothes always had
to match and the things that they liked to do.
Was like so lovely to see how the habit still
(33:53):
formed within the two of them even though they were
raised apart.
Speaker 1 (33:55):
Yes, and Adele did sadly pass.
Speaker 2 (33:59):
Away, but ahead No.
Speaker 6 (34:00):
What struck me about the article was how the way
that Adele was treated medically impacted the way that her
quality of life was. Like when she was a little child,
as was typical of you know, the fifties the sixties,
they gave her really strong drugs, really strong you know,
tranquilizers or what have you, just like that just narctized
(34:22):
her and made her, you know, mostly nonverbal. All the
medical records are like, oh, she's not responding, well, you know,
she's not learning things. But also you're keeping her drugged
for most of her waking time. But then afterwards, when
she was in middle age and they stopped giving her
these intense, you know, medical stuff, that's when she started
(34:43):
to pick up words. That's when she started to respond better.
And yeah, I mean, my dad's a psychiatrist. You heard
from him earlier this season, and he, you know, makes
a point about how, over the course of his being
a psychiatrist he's seen, you know, over the decades, the
emphasis away from you know, let's pump them full of
(35:05):
drugs and keep them you know, tranquilized, to now, you know,
trying to medicate a little less. And yeah, it's it's
it's just sad to think about how many people's lives
were just you know, drugged out of.
Speaker 3 (35:26):
Yeah, especially when they came across the little girl that
had the exact same diagnosis as Adele, and you saw
what her life could have been if she had been born,
you know, thirty years later, and how her experiences as
a small child. She didn't have any of the same
quote unquote diagnosis, the same display of symptoms that Adele did,
because she had you know, physical therapists come with her,
(35:49):
and she had educators come and had special you know,
access to resources and all these things. And that girl
was born i think twenty fifteen, and her life, who
knows how much she she'll be able to develop. Giving
the modern approach to treatment.
Speaker 1 (36:04):
She was adopted by a family that had older neurotypical children,
if I'm not misunderstanding, and then they adopted the I
just like Adele. And it was hard for the author,
Jennifer Seniors, to see what Adele's life could have been
like if she had had that support in her family
instead of being taken away. At the same time, from
(36:28):
reading the article Jennifer Senior's grandparents, I don't really know
if they really wanted to.
Speaker 3 (36:34):
I think they were just advised, like, this is what
you're going to do, this is what you should do.
And I know that she said that they had a
very difficult time letting her go, So I'm sure if
given the opportunity, they would have probably wanted to keep
her in the home.
Speaker 1 (36:48):
And it makes me wonder, not in the same respect,
but in a parallel respect. Family members that are almost
crossed out or sort of like ridden off as foot
and they could have been anything. They could have been
family members that we were gay, or they could have
been members who were disabled, and they were just sort
(37:09):
of there was a shame or there was deep pain
there or whatever characterize that.
Speaker 6 (37:13):
And how I found one example of that. So I
was looking into my Jewish grandma's side, and she had
a cousin who wrote down all, you know, the family
trees and stuff. And there was one particular cousin who
lived in England who I didn't know anything about, and
in his list they wrote up he wrote next to
her name mongoloid, which is a very ugly word for
(37:36):
how they would describe, you know, the physical appearance of
someone with particular kinds of disabilities. And just you know
that that's pretty much all which I know about her,
And yeah, you just you really think about how you
know someone was stigmatized with this word dismissed and yeah,
(37:56):
I can only you know this person and lived to
her mid fifties. But yeah, I don't know.
Speaker 1 (38:04):
That's actually impressive for the time. Yeah, for the time.
I'm not saying that that's okay, but without proper care,
it was usually a lot earlier. So thank you for
sharing that. I also, we are airing this episode today
because two days ago was Disability Awareness Day on December third,
(38:24):
and we really want to highlight our family members who
may have been erased and what we can do moving
forward and highlight this is one thing Latinos walk about.
You know, we take care for them. They're our family regardless.
Now Latino genealogy is not as us as robust, but
(38:49):
as it grows, so will the history of the family.
That maybe in other cultures would have been forgotten, they
won't be forgotten here.
Speaker 6 (38:56):
And I do have one random example, yes, and I'll
talk about it quickly. So I was digging on my grandfather,
brought a side up and Dan Colombia, and I came
across one record. It was seventeen fifty nine in in Zapatoka, Colombia,
a little town, and it was a burial record, and
(39:17):
they talked about Maria incapaz iha de Bedro de Maria
bays So, an incapacitated daughter, And that's the only record
which I've found about her, and I wonder, it's like,
you know, what was her life like in seventeen fifty
nine and earlier. You know, maybe presumably or family took
(39:38):
care of her. But yeah, I mean that's that's a
very harsh way of describing her. And I've never found
another record quite like that. So yeah, I just I
just have to wonder what there.
Speaker 1 (39:51):
It's like you either get completely offensive or completely infantalizing.
Speaker 4 (39:58):
To them back then, like those names were normal, you
know what I mean to us, it's a little shocking,
but that's what they called their their love once. I
think that it was just normal.
Speaker 6 (40:11):
For them back then, and also too, that doctors would
have medical terms like idiot more on what we now have.
Insults back then were diagnostic terms, which just blows my mind.
Speaker 1 (40:22):
You know, I think imbecile is one of them.
Speaker 6 (40:24):
Imbecile too, yeah.
Speaker 1 (40:26):
Which is like insane. I feel like twenty years ago
we were finally starting to accept the fact that you
shouldn't say the R word that I'm not going to repeat, But.
Speaker 3 (40:34):
Even that's a medical diagnosis. Like I work in OBEA
Administration ep cetrics and gynecology, and the term for when
the baby is not growing today we say it's interuterine
growth restriction, and twenty years ago it was interuterine growth
retardation and they changed the termino because it's a medical term.
It means you are slow compared to your peers. So
(40:56):
even that, like it's not just an insult that kids
throughout each other, like it actually means slow.
Speaker 1 (41:02):
Yeah, no, no, it was. It was medically accepted for
a long time then. I feel like in the early
two thousands they were starting to see maybe not maybe,
shouldn't do this anymore? Thankfully. Yeah, I guess please.
Speaker 5 (41:15):
I have paperwork actually that says that on it. So
it's still within my lifespan.
Speaker 1 (41:23):
With describing yourself. Yep, that I'm sitting here shell shocked.
What wow, I'm so angry for you.
Speaker 4 (41:34):
Yeah, the last, I would say, the last, I want
to say the last. Well, we're going to fifteen years.
The DSM, which is the dynastic manuel for disorder diagnosing people,
has changed. But yes, I would agree with her that
at least the early two thousands they were still using
(41:55):
that terminology, so that does make sense.
Speaker 2 (41:59):
My gosh, well, I'm glad we're learning slowly but surely
to move past that. Right, Like, that's insane.
Speaker 1 (42:08):
Let me ask because anyone I know? Meg had mentioned
her family member in Willowbrook, But has anyone found in
their Latino Country research any any like institutions, because I
have not found any.
Speaker 3 (42:22):
And when we were reading our book, The Cemetery of
Untold Stories, when they mentioned the the home for the
resources that they now have for people with dementia, they
were also shocked that, oh my goodness, in a Latino
Country and the Dominican Republic, there's actually like institutions for
people like it was such a foreign concept that I
was thinking of that just now that it is. It's
such a foreign concept to even have somewhere to send
(42:45):
people who you are no longer capable of caring for it.
It was they mentioned that non number of times in
the book that it was just such a shocking thing
to even know that these exist.
Speaker 2 (42:55):
Yeah, that was shocking to me as well as a Dominican.
I was just like, Oh, I realized we had nursing homes,
and I was just like, oh, but I guess that
makes sense, but yeah, and I can imagine, Oh, go ahead.
Speaker 4 (43:06):
Really, it really depends on where you are if you're
speaking about the United States, because not many places have,
you know, resources like that. For instance, New York, New
York is one of the highest places for mental health
and for resources. I relocated to Florida and was hook
(43:27):
awakened by the lack of resources they have here for
people with disabilities. It has improved in the last ten
years that I've almost been here that long, but it's
still like, depending I think you are, where you are
in the country, they have those type of resources. It's
not everywhere, so of course, like it would be hard
(43:48):
for you to know something like that exists, but you know,
it depends on where you are because around the country
they do not have places like that or the resources.
Speaker 1 (43:59):
And actually will lil I specifically remember having a conversation
with you about you know, I think we were talking
about like when my parents retire, like if they would
ever move out of New York because it's getting expensive,
and you were saying something like they could always consider Florida,
it's more cost effective. But then you sat there for
a second and you said, no, they said, you said
(44:19):
they should not move here because and you said, if
there's anything if someone misunderstands, and if your sister has
some sort of outburst and no one understands, she's going
to get bak corrected. Yeah, And I was like, and
that's where that conversation ends right now.
Speaker 4 (44:34):
Yeah, exactly, And that's where the lack of resources comes in,
like there's just there's no place for your sister here.
And I'll be honest with you, like people don't realize
that when they relocate. I want to discuss this more
when we talk about the military, because a lot of
people face that wherever they move, wherever they're branch, they're
new branches, they have they are forced to relocate for
(44:56):
their job, but the resources that they have someone disabled
sometimes are not there. And the military, the government is
I can't even help them. So yeah, imagine when you relocate.
What I found is you have to do your research
before you move anywhere if you have someone disabled and
if you have medical issues, because you want to know
(45:18):
the resources in that area and how they treat people
in that area with those disabilities, because it may not
be as easy to get a hold of those resources
anywhere you know where you are comfortable and you have
those resources. I always tell people, like, it's better than
trying to go find them somewhere else. But if you
(45:40):
do the research and they do have it, great, But
people have to do their research. I have so many
people that relocate here retical Sunshine State or because you
know it's affordable or what have you, but then their
loved ones are suffering because the resources aren't there.
Speaker 1 (45:57):
That's so far.
Speaker 5 (45:59):
In the question of if you're even allowed to move,
Like I am not eligible to immigrate to Australia or
Canada for example, because according to their government, I would
be a burden on their healthcare system.
Speaker 4 (46:15):
Right right, So yeah, I believe that. Unfortunately, you know,
we can't really speak for other countries. That's what they do,
and you know their government system and why we don't
know the history, like I would love to know the
history behind that and why that that doesn't even exist now,
you know, times are changing, so I still have hope
(46:36):
that they would change that, but there's something there for
their history to put that in place. Unfortunately, and you know,
we need to know why we need answers, and nowadays
people are getting those answers and are changing.
Speaker 3 (46:55):
Thank you so much.
Speaker 1 (46:56):
I wanted to also before tam my mother's side of
the family, I would I would love to also discuss
some you know what, actually does anyone else have something else?
Before I bring up my notes?
Speaker 2 (47:09):
There there are stigmas I think, I mean probably right
like in old cultures for people who are differently able.
So despite I think like even a family's love, rite
and acceptance and just really sort of like you know,
hugging and enveloping that person, even the larger society can
(47:31):
can can still you know, write like be discriminatory. So
for example, one of my dad's sisters was born with
a deformed arm, like her hand is like it's literally
like a small I don't know what the what the
diagnosis or the term is, so I apologize. But she's
(47:53):
literally the most intelligent person in the family. She went
to school, she has as j D in the Dude
to Republic, and yet she has not been allowed to
she has not been allowed to really sort of like
flourish right as a person, as a professional. At one
point she was a teacher as well, and you know,
(48:16):
sort of like well everyone benefited right again from from
her just being an amazing and awesome person, but she
has gotten passed passed over, passed on past what is it?
What's the term passed over passed over for jobs?
Speaker 1 (48:33):
And that's what I would love to jump into.
Speaker 2 (48:34):
Yeah, because just because of that, like you know, I
don't want to say the term like well, because of
you know, her, her her arm didn't develop the way
that it was supposed to. So yeah, that's just like
horrible discrimination.
Speaker 1 (48:48):
Absolutely And one I actually, as I was speaking, I
remember meeting a family member in Al Salvador and he
I'm not going to I'm not going to give his
ama oult but he he is what was deformed, very
hard time walking, and it was very visible. And they
in no one asks for money. They just kind of
(49:09):
mention if they're hungry or if they're struggling, you know,
and then it's just in our like you know, we feed,
you know, we do it, and we don't think twice.
It's not like America at all. So when I was
I was thinking of him, and I was saying that,
and I was doing research on this, and to Johnpon,
Wafausto said, only thirty seven percent of working age Latinos
(49:29):
with disabilities are employed in the United States compared to
seventy three point nine percent of working age Latinos without disabilities.
It is literally half Jesus. So that is another way
we will not be be able to find our ancestors
if no one was giving them jobs. This is true,
So we can't find them in censuses on certain job records.
(49:50):
And it's like it's just one way. It's okay. As
we've discussed this podcast before, it's harder for Latino genealogy,
and here's another reason why it's harder. But but we're
making an effort to not forget to spotlight on it
and to move forward with it to you know, what
we can do cycle breakers, you know, breaking stigma. From
(50:11):
what I read, there is a common manifestation of social
stigma and the Latino community. And it's like it's almost
like the reverse of what we were saying is and
I think it was written by an American, but that
you were saying that a person with the disability is
seen as a famili's problem, for better or for worse.
It's not you know, stays with our own YadA YadA,
(50:32):
but don't provide help. It's like their specific issue. And
then within the family like we take care of our own, which,
as we've said, is the truth, but it must be
hard living in a family culture that really supports their
own family in an in a community, in a society
that does not reflect that values at all. So it's like,
you want to take care of your family member, you
want to provide the best services, You want them to
(50:53):
stay with you as long as possible to help them flourish,
and you were surrounded by a society that does not
encourage that and wants to remove a blemish. Just say
that pretty, but actually I would also love to sometimes
I don't know if this has been true in your families,
but sometimes families may limit the individual's contact with the
outside world for protection, not because it's shame, but to protecting.
(51:17):
Are you here, Yeah, that's what you've seen, Lilian.
Speaker 4 (51:20):
Yeah, absolutely, sharing all this like it's that's my mindset.
Unfortunately it's that protection, but at the same time it
hinders them and the family is looking at it like
as they're protecting them, but at the state like they've
seen probably their family members discouraged from being out there
(51:42):
or you know, told they couldn't do this that There
are some families that will fight for no end, especially
cultural families that I've seen. Those people are relentless and
they will go through hoops to get their luck once
the things that they need and will fight for them.
But unfortunately, we do have those families that just kind
(52:04):
of want to they don't want they don't want to
speak up, and then that hinders the person as well.
So I have seen both sides.
Speaker 1 (52:12):
On a positive note, I would love to just spotlight
some of our famous Latinos with disabilities, and I think
the first one that comes to all of our mind
is Frieda Callo.
Speaker 2 (52:23):
Ye.
Speaker 1 (52:24):
Yes, she had polio as a child and she was
in a horrible bus accident, but she did not shy
away from that at all. She was very proud and
she put that in her paintings, and she put things
that made other people uncomfortable and they were some of
the most beautiful pieces of art we've ever seen. So
always shout out to Frieda. Also, there's Uh, there's Julian Mercado.
(52:50):
She has and I'm surprised this is a medical term still,
but spastic musculars is the spastic. I think we don't
use that anymore. That's but she had muscular dystrophe. Salama
Hayek is actually dyslexic with ADHD and she discusses that
a lot. How there were opportunities taken from her and
childhood was hard because nobody would or she had a
(53:12):
hard time getting accommodations for her learning disability or not
learning differences, I should say, But she is very proud
and she talks about that a lot. There is celebrity
Lauren riddallt Ridloff, and she's deaf. And Sophia Girau, who
I believe is Puerto Rican and maybe Brazilian. She has
Down syndrome and she's a model. Wow. She is And
(53:34):
actually a more recent example is Selena Gomez. She has
lupus and she had her kidney transplant. She has autimmune disease, anxiety, depression,
bipolar disorder. But she's been very open about this and
she's been open about getting the care that everyone needs.
And I'm really happy that we have some I don't
(53:54):
want to say role models because that puts a responsibility
on their shoulders.
Speaker 3 (53:57):
Examples.
Speaker 1 (53:58):
He has examples and representation of like thriving and being
able to call out, call out the crap you went through.
Please put it on the table. We're here for it, okay,
and we do not deny anyone's experience there. So that's
what I have for this. But does anyone else have
(54:18):
anything to add or mega lil you guys good? Do
you have anything else to want to add?
Speaker 4 (54:24):
Hey?
Speaker 6 (54:25):
So, if you like our podcast, please hit follower subscribe.
It is different from downloading. If you enjoy our podcast,
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(54:45):
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Speaker 1 (55:05):
All right, well, thanks so much for joining us. Everybody,
Thank you, thank you,
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