July 1, 2025 • 8 mins
Today we're highlighting the Marriage Equality for Disabled Adults Act, inspired by Lori Long.
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Episode Transcript
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Speaker 1 (00:05):
Okay, this is Sanny and Samantha and welcome to stuff
I never told you productive I Heeart Radio.
Speaker 2 (00:18):
And we are kicking Disability Pride Month off. Yes, y'all,
July first, we have begun with a bang for our
activists around the world and doing it a bit different
because we want to talk about a reintroduced bill from
California Representative Jimmy Panada and the woman who inspired this act,
Lori Long, which is titled the Marriage Equality for Disabled
(00:40):
Adults Act. So if you want more information, you can
actually go take a lesson to our past episode that
Annie led on about marriage and disability, which we do
mention Representative Panada and his bill when he first introduced it,
but you know, signed for an update, and I'm not
going to tell you much because there's not much of
an update except for the fact that he reintroduced it
(01:01):
because it just kind of sat there. So all that
to say, let's talk about Lori Long, a disabled woman
who resides in California. She met her partner Mark when
she was in her forties and it was doing this
relationship she was able to make it through all the
trials and tribulations that is called dating. If you know,
you know, and surviving that. They knew they wanted to
(01:21):
be married and spend their lives together as a married couple.
But of course, because we can't have nice things and
people are not allowed to have autonomy, they knew this
would be complicated, especially with her disability benefits. Literally, she
would lose it benefits that she has received since she
was a child due to her autoimmune condition known as
(01:42):
ankylosing spondylitis. As we talked about before, benefits like DAK
or Disabled Adult Child and SSI would be eliminated due
to the marriage penalty. This is from a twenty twenty
four article written in today dot com about long story.
Shout out to them because I'm a quote them a
little bit. The policies regulating disabled adult children only allow
(02:05):
for marriage if someone marries another adult, disabled child or
someone receiving Social Security because of disability or retirement of
Allah says who is a contributor. If they marry someone
who does not receive DAK or SSI, they lose their benefits. Yeah,
and it isn't just these benefits specifically, but also their
Medicaid could be at risk as well. So we wanted
(02:25):
to note that and here's a bit from their interview
an article about Long. They say, growing up, Long was
diagnosed with enklosing spondylitis, an autoimmune condition that causes inflammation
in the joints in the spine. According to the National
Institute of Arthritis and Muscular, Skeletal and Skin Diseases, it
causes pain and stiffness as people lose flexibility in their spine.
People with it often develop problems with their gut, skin conditions,
(02:47):
eye diseases, and even bladder problems. It affects my daily
life and daily activities, Long says, and yet we talked
about in our episode, not many people understand about these
restrictions or that it even exists. Going back to this article,
they say, so few people understand the restrictions on marriage
that when Long called her local Social Security office to
(03:09):
check if she would lose her benefits, the person who
answered the phone and accurately reassured her. They told me, oh, honey,
of course you can get married. You're not going to
suddenly become not disabled when you get married. Long recalls,
after chatting with a friend, she called back and asked
for a specialist in the marriage rules. She said, oh,
I'm so sorry, they must have not realized your status.
(03:30):
If it's regular Social Security disability insurance, you can marry
whoever you want and keep your disability insurance and healthcare,
Long says, But if you're a disabled adult child on
a parent's work record, you're limited as to who you
can marry. And by the way, all of this includes
the fact that when she was a child being diagnosed,
her father's insurance dropped her. So they were like what
(03:52):
was going on and had to apply for it anyways.
So not only did they try to take care of
it on their own insurance, they were not allowed. By
the way, it was illegal at the time, but no
one cared, No one really stood up for their rights. Again,
we talk a lot about this in this episode that
was previously recorded, and he did all that research, thank
you very much. And with the restrictions and roadbox, Long
(04:13):
had the courage to contact her then a local congress person, Rep. Panetta.
Now I think she also contacted her local state congress person,
but they were like, no, this is bigger than just
the local, We need this to be federal, so they
went higher up. So Long has been rallying and advocating
for herself at the same time as trying to get
(04:33):
this done through federal policies and with a disabled community.
She actually talks about how she wishes she didn't have to,
but she literally does not know what else to do
because it has impeded her life essentially. And again from
Today dot com, they write, in September twenty twenty three,
Long helped organize a rally, a mass commitment ceremony that
took place in Washington, DC. Participants called attention to the
(04:55):
restrictions disabled people face and advocated for marriage equality. I
said we need to start having protests out in front
of the Capitol and have a mock ceremony. Long says,
it was a great ceremony. We had a lot of
wonderful people there. Love that kudos. So it was on
Valentine's Day of this year, twenty twenty five that Reped
Panetta reintroduced the bill. So from his site Panetta dot
(05:18):
House dot gov, they write, under current law that beneficiaries
more than one million Americans with lifelong disabilities lose their
Social Security and Medicaid benefits if they marry a non
disabled person. This antiquated rule strips individuals of their financial
and health care security. Simply because they wish to build
a life with their partner. The Marriage Equality for Disabled
(05:40):
Adults Act would repeal this unjust penalty and ensure that
disabled individuals are not punished for choosing to marry. Which,
by the way, the riot has been pushing everybody, y'all
need to get married. But we know it's about eugeniks
so moving on and in that side, he is quoted
with this, No Americans should have to choose between their
happiness and their healthcare, said Reponetta. By reintroducing this legislation,
(06:04):
we are standing up for the fundamental right to marry
without fear of losing essential benefits. Every person, no matter
their circumstances, deserves the dignity and freedom to build a
life with their needed benefits and the person they love.
And by the way, he does lean into like everyone
equal marriage love is love type of thing. So just
in case you were wondering, the Act includes that several
(06:25):
key provisions, again from his site. One eliminates the requirement
that a dakficiary remain unmarried to receive Social Security benefits.
Two ensures that DAK benefits are not revoked upon marriage.
Three modifies Social Security's rules regarding common law marriages, which
by the way, we talked about for protects SSI and
(06:45):
Medicaid eligibility for Dax who marry a non disabled person.
So of course Long is hopeful and is waiting. Here's
a quote provided to Monterey countynow dot com, who, by
the way, writes a few things about her and really
really like is behind her and supports her. She says,
it feels like the world is going full on chaotic
(07:07):
and taking time to celebrate love may seem silly or
even a little selfish. Long sins by text that having
been said, matters of the heart continue to matter, even
though meaning in the disability community feel like we have
front row seats to the chaos. So obviously she's talking
about the many layers and layers that has happened which
their rights are being just trampled on on a constant basis.
(07:29):
But this has been something that needed to be fixed
from jump. Let's just be real honest, and I know
again Annie has some amazing research listeners who have sent
this in as a request. We know that y'all have
been following this closely. We thank you again for bringing
stuff like this to our attention because this is the
intersectionality of it all. We need to have this conversation.
And also kudos to the representative who is trying to
(07:52):
push this forward and not allowing it just to sit.
Speaker 1 (07:55):
Yes. Absolutely, Thank you so much listeners for bringing this
to our attention and all kinds of resources that you
send us. Please keep that coming. If you would like
to contact us, you can email us at Hello at
stuff Whenever Told You dot com. You can find us
on Blue Sky at molstuf podcast, or on Instagram and
(08:15):
TikTok at stuff I Never Told You. We're also on
YouTube and we have a book you can get wherever
you get your books. Thanks sis too, our super dis
Christine or executive christ for my and your contributor Joey.
Thank you, Thanks you for listening Stuff Never Told You
Structure I Heart Radio For more podcast from my Heart Radio,
you can check out the iHeartRadio app Apple Podcasts wherever
you listen to your favorite shops.
Okay, this is Sanny and Samantha and welcome to stuff
I never told you productive I Heeart Radio.
Speaker 2 (00:18):
And we are kicking Disability Pride Month off. Yes, y'all,
July first, we have begun with a bang for our
activists around the world and doing it a bit different
because we want to talk about a reintroduced bill from
California Representative Jimmy Panada and the woman who inspired this act,
Lori Long, which is titled the Marriage Equality for Disabled
(00:40):
Adults Act. So if you want more information, you can
actually go take a lesson to our past episode that
Annie led on about marriage and disability, which we do
mention Representative Panada and his bill when he first introduced it,
but you know, signed for an update, and I'm not
going to tell you much because there's not much of
an update except for the fact that he reintroduced it
(01:01):
because it just kind of sat there. So all that
to say, let's talk about Lori Long, a disabled woman
who resides in California. She met her partner Mark when
she was in her forties and it was doing this
relationship she was able to make it through all the
trials and tribulations that is called dating. If you know,
you know, and surviving that. They knew they wanted to
(01:21):
be married and spend their lives together as a married couple.
But of course, because we can't have nice things and
people are not allowed to have autonomy, they knew this
would be complicated, especially with her disability benefits. Literally, she
would lose it benefits that she has received since she
was a child due to her autoimmune condition known as
(01:42):
ankylosing spondylitis. As we talked about before, benefits like DAK
or Disabled Adult Child and SSI would be eliminated due
to the marriage penalty. This is from a twenty twenty
four article written in today dot com about long story.
Shout out to them because I'm a quote them a
little bit. The policies regulating disabled adult children only allow
(02:05):
for marriage if someone marries another adult, disabled child or
someone receiving Social Security because of disability or retirement of
Allah says who is a contributor. If they marry someone
who does not receive DAK or SSI, they lose their benefits. Yeah,
and it isn't just these benefits specifically, but also their
Medicaid could be at risk as well. So we wanted
(02:25):
to note that and here's a bit from their interview
an article about Long. They say, growing up, Long was
diagnosed with enklosing spondylitis, an autoimmune condition that causes inflammation
in the joints in the spine. According to the National
Institute of Arthritis and Muscular, Skeletal and Skin Diseases, it
causes pain and stiffness as people lose flexibility in their spine.
People with it often develop problems with their gut, skin conditions,
(02:47):
eye diseases, and even bladder problems. It affects my daily
life and daily activities, Long says, and yet we talked
about in our episode, not many people understand about these
restrictions or that it even exists. Going back to this article,
they say, so few people understand the restrictions on marriage
that when Long called her local Social Security office to
(03:09):
check if she would lose her benefits, the person who
answered the phone and accurately reassured her. They told me, oh, honey,
of course you can get married. You're not going to
suddenly become not disabled when you get married. Long recalls,
after chatting with a friend, she called back and asked
for a specialist in the marriage rules. She said, oh,
I'm so sorry, they must have not realized your status.
(03:30):
If it's regular Social Security disability insurance, you can marry
whoever you want and keep your disability insurance and healthcare,
Long says, But if you're a disabled adult child on
a parent's work record, you're limited as to who you
can marry. And by the way, all of this includes
the fact that when she was a child being diagnosed,
her father's insurance dropped her. So they were like what
(03:52):
was going on and had to apply for it anyways.
So not only did they try to take care of
it on their own insurance, they were not allowed. By
the way, it was illegal at the time, but no
one cared, No one really stood up for their rights. Again,
we talk a lot about this in this episode that
was previously recorded, and he did all that research, thank
you very much. And with the restrictions and roadbox, Long
(04:13):
had the courage to contact her then a local congress person, Rep. Panetta.
Now I think she also contacted her local state congress person,
but they were like, no, this is bigger than just
the local, We need this to be federal, so they
went higher up. So Long has been rallying and advocating
for herself at the same time as trying to get
(04:33):
this done through federal policies and with a disabled community.
She actually talks about how she wishes she didn't have to,
but she literally does not know what else to do
because it has impeded her life essentially. And again from
Today dot com, they write, in September twenty twenty three,
Long helped organize a rally, a mass commitment ceremony that
took place in Washington, DC. Participants called attention to the
(04:55):
restrictions disabled people face and advocated for marriage equality. I
said we need to start having protests out in front
of the Capitol and have a mock ceremony. Long says,
it was a great ceremony. We had a lot of
wonderful people there. Love that kudos. So it was on
Valentine's Day of this year, twenty twenty five that Reped
Panetta reintroduced the bill. So from his site Panetta dot
(05:18):
House dot gov, they write, under current law that beneficiaries
more than one million Americans with lifelong disabilities lose their
Social Security and Medicaid benefits if they marry a non
disabled person. This antiquated rule strips individuals of their financial
and health care security. Simply because they wish to build
a life with their partner. The Marriage Equality for Disabled
(05:40):
Adults Act would repeal this unjust penalty and ensure that
disabled individuals are not punished for choosing to marry. Which,
by the way, the riot has been pushing everybody, y'all
need to get married. But we know it's about eugeniks
so moving on and in that side, he is quoted
with this, No Americans should have to choose between their
happiness and their healthcare, said Reponetta. By reintroducing this legislation,
(06:04):
we are standing up for the fundamental right to marry
without fear of losing essential benefits. Every person, no matter
their circumstances, deserves the dignity and freedom to build a
life with their needed benefits and the person they love.
And by the way, he does lean into like everyone
equal marriage love is love type of thing. So just
in case you were wondering, the Act includes that several
(06:25):
key provisions, again from his site. One eliminates the requirement
that a dakficiary remain unmarried to receive Social Security benefits.
Two ensures that DAK benefits are not revoked upon marriage.
Three modifies Social Security's rules regarding common law marriages, which
by the way, we talked about for protects SSI and
(06:45):
Medicaid eligibility for Dax who marry a non disabled person.
So of course Long is hopeful and is waiting. Here's
a quote provided to Monterey countynow dot com, who, by
the way, writes a few things about her and really
really like is behind her and supports her. She says,
it feels like the world is going full on chaotic
(07:07):
and taking time to celebrate love may seem silly or
even a little selfish. Long sins by text that having
been said, matters of the heart continue to matter, even
though meaning in the disability community feel like we have
front row seats to the chaos. So obviously she's talking
about the many layers and layers that has happened which
their rights are being just trampled on on a constant basis.
(07:29):
But this has been something that needed to be fixed
from jump. Let's just be real honest, and I know
again Annie has some amazing research listeners who have sent
this in as a request. We know that y'all have
been following this closely. We thank you again for bringing
stuff like this to our attention because this is the
intersectionality of it all. We need to have this conversation.
And also kudos to the representative who is trying to
(07:52):
push this forward and not allowing it just to sit.
Speaker 1 (07:55):
Yes. Absolutely, Thank you so much listeners for bringing this
to our attention and all kinds of resources that you
send us. Please keep that coming. If you would like
to contact us, you can email us at Hello at
stuff Whenever Told You dot com. You can find us
on Blue Sky at molstuf podcast, or on Instagram and
(08:15):
TikTok at stuff I Never Told You. We're also on
YouTube and we have a book you can get wherever
you get your books. Thanks sis too, our super dis
Christine or executive christ for my and your contributor Joey.
Thank you, Thanks you for listening Stuff Never Told You
Structure I Heart Radio For more podcast from my Heart Radio,
you can check out the iHeartRadio app Apple Podcasts wherever
you listen to your favorite shops.
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