By Sarah Kim

You’ve probably heard of marriage equality or marriage equity, likely in the context of LGBTQ+ rights. But there’s another kind of marriage inequity affecting people with disabilities: the disability marriage penalty. In this context, “marriage penalty” refers to a series of Social Security rules that trigger reduction or complete loss of disability benefits for otherwise qualified individuals when they get married.

The disability marriage penalty punishes people with disabilities in the U.S. who get married by stripping them of disability benefits such as Social Security benefits and Medicaid.  The clause has remained a part of the benefits policy for years, affecting many thousands of people with disabilities. Consequently, marriage rates among Supplemental Security Income (SSI) recipients are half that of the general public. 

SSI is a needs-based program that is based on an individual’s income and assets. The SSI program is for people with disabilities including children and older adults who have limited income and resources. State programs can supplement federal SSI benefits. When the individual gets married, joint income and assets are evaluated when determining whether a person is still eligible for the benefits.

Due to this marriage penalty, the system has made it so that many people with disabilities cannot get married or start a family. This stems from longstanding institutionalized ableism that actively prevents people with disabilities from living long, fulfilling lives. Some disability rights advocates trace the marriage penalty back to the eugenics and institutionalization movements, beginning in the 19th century and continuing in popularity through the 1940s. These entrenched policies of discrimination included forced sterilization of disabled people and segregated disabled individuals from interacting with nondisabled people in the belief that they were preventing disabilities from spreading to offspring.

Although practices like the marriage penalty aren’t as overtly ableist as practices of the past, they still keep people with disabilities from accessing the same caliber of life, liberty, and the pursuit of happiness that their nondisabled counterparts have.

Why People with Disabilities Forgo Marriage or Resort to Divorce 

When deciding to offer disability benefits, the Social Security Administration assesses one’s income and assets. This can be a problem for married couples because they may be disqualified if their combined bank balance is greater than $3,000. Too often, these combined assets and incomes are too high to qualify for federal assistance. A common assumption is that a nondisabled partner would take care of their disabled spouse financially and medically, and that additional supports would not be necessary. This is not the case for many couples, and puts the disabled person at a disadvantage, leaving them completely dependent on their partner, which can also leave them more vulnerable to abuse, with no personal income to protect them.

For couples who both have disabilities, the impact is even greater. Married couples are allowed to have fewer assets than each party would have as individuals. After they marry, they’ll receive about 25 percent less in benefits than they did as two unmarried individuals. The assumption behind this is that the couple can live on less income together than as individuals.

However, many disability assistance programs — such as community-based services, home-care aides, and long-term care facilities — only accept Medicaid recipients. And the only way to qualify for Medicaid is to fall below certain income thresholds. This presents itself as a catch-22. Even if an individual can afford private health insurance, health care costs for people with disabilities are often much higher than for nondisabled people.

According to the U.S. Census, employees with disabilities earn on average 66 cents for every dollar earned by nondisabled peers, putting them at or below the poverty line. Paying for healthcare, housing, and the basic cost of living can be nearly impossible. So, for many individuals with disabilities, remaining unmarried is, unfortunately, their only way of survival.

Often, happily married individuals with disabilities resort to divorce simply to gain access to healthcare and benefits. In fact, according to OZY, between 2009 and 2019, nearly 1.1 million Americans with disabilities got divorced, compared to 593,000 who got married. Roughly twice as many people with disabilities got divorced than married.

However, even if an individual with a disability isn’t legally married, SSA can disqualify them for “holding out” as a married couple. If the federal agency finds out the individual is cohabitating with their partner and sharing living expenses, they can still lose their benefits, even if they’re not married.  

What the SSI Restoration Act is and How it Can Help 

Disability benefit regulations in the U.S. are outdated and inequitable. Most of the SSI eligibility rules have not been updated since President Nixon signed the Social Security Amendments into law in 1972. The amount of money recipients receive has also been stagnant, not accounting for inflation.

In June 2021, the Supplemental Security Income Restoration Act was introduced in the US House of Representatives by Representative Raul Grijalva (D-AZ), Representative Jan Schakowsky (D-IL), and Representative Elissa Slotkin (D-MI) and in the Senate by Senator Sherrod Brown (D-OH). 

This bill would modernize SSI benefit programs and improve the lives of nearly 8 million people with disabilities and seniors.

The SSI Restoration Act would:

• Eliminate the disability marriage penalty by setting the SSI couple benefit rate to two times the individual rate,
• Increase the asset cap for individuals from $2,000 to $10,000 and for couples from $3,000 to $20,000,
• Increase the benefit rate to match the federal poverty line, adjust for inflation, and
• Allow people with disabilities to work and earn up to $416 per month without their SSI being reduced based on their income. 

The time for updating SSI policies is long overdue, and this act has the potential to rectify a longstanding injustice. People with disabilities have been forced to choose between love and survival as a result of archaic policies. The bill has yet to be passed, but civilian engagement could tip the balance in its favor. 

By Drew Dakessian

The disability justice movement has long had an unofficial slogan: “Nothing about us without us.” It asserts that the lived experience of disabled people is critical to policies that affect them and to stories that center them. And yet, for decades, disabled people often have been absent from the disability narrative in the media. However, the advent of social media has afforded an unprecedented chance for disabled people to make their voices heard at last. 

Many disabled people are now using their social platforms to promote positive disability representation.

Reclaiming the narrative

Some think what limits disabled people isn’t their disabilities but how society perceives them. Of course, that, in turn, puts the onus on disabled people to surpass society’s conceptions and thrive despite artificial obstacles.

Thus, “positive disability representation” runs the risk of toxic positivity — the belief that you should only have a positive state of mind and not dwell on negative emotion. The internet is no exception; many media portrayals about disability are what the late, great Stella Young dubbed as “inspiration porn.” This type of storytelling depicts disabled people “overcoming” their disabilities thereby serving as uplifting models of the triumph of the human spirit.

But a growing number of disabled people have been using the popular video-sharing platform TikTok to tell their stories their way. Here are 15 disabled creators who are turning the inspiration porn trope on its head.

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Britt (@myelasticheart)

@myelasticheart

Disability history makes me emotional #DisabilityPride #Disability #ADA31 #QuickBooksVictoryPose #Power

♬ Nina Cried Power – Hozier

Britt was diagnosed with non-vascular Ehlers-Danlos syndrome at age 13 and complex regional pain syndrome at 19. In late March 2020, she posted a video captioned, “Chronically ill folks have done this all before ya know #covid19.” Since then, she’s been sharing TikTok after TikTok in which she sheds light on a disability-related issue, answers a question, or offers some (non-toxic) positivity to other “babes with mobility issues.”

Ella Willis (@ellaellaw)

@ellaellaw

What does autism look like then?? A stereotype probably 🙄 #autism#autistic#viral#fyp#VirginMediaSpeedMC#GarnierUNFILTERED#actuallyautistic#siamovie

♬ Trono De Mexico Quien Piensa En Ti – Misery DeNiro

Ella Willis doesn’t shy away from being candid about her autism symptoms — even and especially when they seem contradictory. She also doesn’t hesitate to assert that being queer and autistic aren’t mutually exclusive. 

Erin Novakowski (@wheelierin)

@wheelierin

face check cuz i still have no funnie left (i’ll find some soon) why does the pink half my head have to sit so weird. purple just minds its business:/

♬ Beggin’ – Måneskin

Erin Novakowski has spinal muscular atrophy. She often harnesses TikTok to educate non-disabled people about the disabled experience in videos replete with unfiltered raw conversations.

Gem Hubbard (@wheelsnoheels_)

@wheelsnoheels_

#WheelchairAccess done right. There’s #NoExcuse #fyp #Accessible #PlacesToVisit #Brighton Where do you like to visit that’s accessible?

♬ Fly Away – Tones and I

Gem Hubbard uses a wheelchair due to a spinal cord injury, and she has made use of that unique perspective on mobility both to educate and entertain. Without glossing over the reality of her situation, Gem discusses her life experiences and shares lessons in her TikToks.

Jay Johnson (@itsjaaayyy)

@itsjaaayyy

Reply to @user2452891_4 i hope you like it! #tiktokresume #bookworm #disabilityawareness #disabilitypride #gymtiktok

♬ Kurxxed Emeraldz – Luci4

Jay Johnson is a 19-year old TikTok sensation living with polymyositis. Her TikToks focus on living with a chronic illness and how she finds catharsis through makeup and fashion.

Imani Barbarin (@crutches_and_spice)

@crutches_and_spice

Concepts you need to know to advocate for the #disabillity community. #ZitHappens #WorthTheWait #OneStepCloser #greenscreenvideo

♬ original sound – Crutches&Spice ♿️ :

Imani Barbarin is a disability rights advocate and creator of the online platform Crutches and Spice, a blog and TikTok about her experiences as a Black woman with cerebral palsy and disability issues  in general. She declares, “Working too hard and overextending yourself to prove that you’ve overcome your disability will only disable you further.” 

India Sasha (@indiasasha)

@indiasasha

Nub bump me sis ✋🏼 #disabledtiktok #comedy #jokes #2020Wrapped #fyp

♬ original sound – Indiasasha

India Sasha calls herself the CEO of one-hand humor. She lives with symbrachydactyly, which in her case means her right hand has four tiny boneless fingers and a nubbin of a thumb. “Two things make me happy: educating people about disability and making people laugh,” she says in a TikTok posted back in December. 

Isabel Mavrides-Calderón (@powerfullyisa)

@powerfullyisa

!! #disa #disabilityrights #disabled #disabilitypride #TeamofTomorrow #chronicillness #chronicallyill #chronicillnessawarness #accessibility #ableism

♬ original sound – Isabel🇪🇨🇨🇺

At the young age of 16, Isabel Mavrides-Calderón is already making waves in the disability rights community via Twitter and TikTok. On the latter, she draws from her experience as a person with a spinal injury to share her wealth of knowledge about disability rights and disability history. She addresses a whole host of critical topics, such as the Ugly Laws and invisible disability. 

Jessica Kellgren-Fozard (@jessicaoutofthecloset)

@jessicaoutofthecloset

It’s #deafawarenessweek so use my main communication tool and see if you can read my lips 🤔😉 #deafawarenessmonth #lipreading

♬ Read My Lips – Jessie Ware

Jessica Kellgren-Fozard is a popular YouTuber and creator who is deaf and has chronic illnesses. She has amassed over a million followers across her social media platforms. Her TikToks center around living with disabilities, her love for vintage fashion and her LGBTQ+ identity.

Jiya Day (@bbjiya)

@bbjiya

Having cerebral palsy is the biggest villain to my social anxiety 😩😂 #disability #cerebralpalsy #ableism

♬ original sound – Jiya

Jiya Day, who has cerebral palsy, uses her TikTok to set the record straight on stereotypes about disability. And she does so authentically and unapologetically. Her TikToks focus on her college adventures as a person with a disability.

Kelly Barendt (@kellyandfa)

@kellyandfa

That’s on unlearning ableism #raredisease #chronicillness #curefa #babewithamobilityaid #neuromusculardisorder

♬ Know Yourself – Drake

Kelly Barendt has Friedreich’s ataxia, a rare neuromuscular disorder that causes movement problems and can shorten life expectancy. “Illness can be isolating,” she writes in one blog post, “but with social media it doesn’t have to be.” She strives to make feminist content “that’s helpful and inspiring to other young women with disabilities and chronic illness,” she explains. 

Abi Jay (@autistic_artistic)

@autistic_artistic

Let’s vibe with our diagnoses! 😎❤️#autismacceptance #autismawareness #autism #autistiktok #fyp #foryou

♬ Sweater weather X Sweater weather Gaullin remix – evanormous

Abi Jay is just what her TikTok handle implies: an artist. For a little over a year, that artistry has taken the form of what she describes as “relatable and educational” short videos on her disability, autism. And while she may not yet have as sizable a viewership as some of the other TikTokers on this list, we’re calling it now: she has a bright future ahead of her. 

Laiken Olive (@thebionicbabe)

@thebionicbabe

#pride Arm cover for @openbionics hero arm #pridemonth #disabledpride #cyborg #bionic #art #nonbinary #pride2021🏳️‍🌈 #rainbow #queer

♬ swing lynn – c ༄

Twenty-one-year-old Laiken Olive may be best known as the first recipient in the U.S. of the ‘Venom Snake’ bionic arm. But they also regularly share insightful content about life with a limb difference and what it’s like to be an ambassador for the disabled community overall. Spoiler alert: It’s not always easy.

Lucy Edwards (@lucyedwardsblind)

@lucyedwardsblind

Why is this photo of an Braille railing in Italy going viral? #LearnOnTikTok #EduTok #blind #braille #viralimage #italy #poems #audioDescription

♬ News – AShamaluevMusic

Lucy Edwards has over 1.6 million followers, and it’s easy to understand why. Her TikTok consists of videos with practical information on day-to-day life as a blind person, explaining how she uses everyday objects, including eyelash curlers and robot vacuums. By normalizing disability without sugarcoating it, she’s giving inspiration porn a run for its money.

Spencer West (@spencer2thewest)

@spencer2thewest

3 Things that make my car accessible. #disabilitytiktok #learnhow #tutorials #questionsigetasked

♬ Blue Blood – Heinz Kiessling & Various Artists

Spencer West uses his killer comedic timing and flair for physical comedy to give viewers an inside look at how he deals with his disability in all aspects of day-to-day life as an amputee with sacral agenesis — while also making sure to clarify that it may not be the same way that others with the same disability do.

Are you following these creators on TikTok yet? Catch up on our latest blog posts here!

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By Sarah Kim

While conservatorships have been around for decades, it was not until pop star Britney Spears’s ongoing conservatorship dispute made the headlines in early 2021 that such a concept came to be mainstream.

The topic started to grab the media’s attention when The New York Times released the “Framing of Britney Spears” documentary in Feb. 2021. As Spears’s court hearings were made public, the conversation around conservatorships and guardianships only intensified.

In legal practices, a guardian is a court-appointed authority who takes care of people who cannot take care of themselves.

The documentary special chronicled the pop singer’s life, focusing on the past thirteen years that she was under her father and attorney’s conservatorship, forcing her to live under strict and restrictive living conditions. Under her conservatorship, Spears doesn’t have control over her finances, reproductive health or mental health care.

The court-supervised conservatorship gives Spears’s father control over her $47 million estate as well as her professional and personal affairs. Spears has been under this stringent arrangement since 2008 — after she experienced very public mental health episodes.

In recent months, the #FreeBritney campaign that her devoted fans have spearheaded since 2019 has skyrocketed. On June 23, Spears testified in front of Judge Brenda Penny uninterrupted for 24 minutes.

“I shouldn’t be in a conservatorship if I can work and provide money for myself and pay other people,” Spears said during the hearing. “The laws should change.”

To many, the fact that a successful celebrity is under such restrictive and intrusive care and order of her father is shocking. The New York Times film briefly brushed over the fact that a conservatorship is typically placed on the elderly or those with intellectual disabilities who can no longer take care of themselves.

However, what is grossly getting left out of Spears’s narrative is that under the gaze of the legal system, she is essentially deemed as a person with a disability. What sets Britney Spears’s conservatorship case apart from millions of people with disabilities is that it has the public batting an eye. Because of the sensitive nature, conservatorship hearings and proceedings are usually private and confidential, making them seem much less common than they actually are.

A commonplace for people with disabilities

Conservatorships are often a way for caregivers or family members to abuse their power and abuse people with disabilities, even those without intellectual disabilities or mental health illnesses. Often, conservatorship laws do the exact opposite of what they are meant to. Instead of having people with disabilities’ best interests, they impede the advancement of disability rights and deny disability justice to the beneficiaries.

The AARP estimates that about 1.5 million adults are under a conservatorship or guardianship in the U.S. However, this is merely a gross underestimate — there are no federal or state regulations to track who is put under a conservatorship. The ACLU reports that people only end up under conservatorships if they are assessed as having some type of disability. And, conservatorships controlling a person’s way of life — from forced sterilization to being banned from marriage to limited child visitation rights — is all too common for adults with disabilities under such legal care.

Many local governments continue to use conservatorships to force people with disabilities experiencing homelessness off the streets and into institutions. The disability community often refers to guardianships as “civil death.”

Sara Luterman, a journalist who is autistic and partially blind, told Slate, “You essentially legally stop being a person. All of the civil rights that you have are basically afforded to your guardian.”

Like conservatorships, institutionalization has a long history of disempowering disabled people. The primary difference is conservatorships remove the physical location of abuse and control while keeping in place systems and ideologies that assert that disabled people deserve to have their rights and independence taken away from them. 

Conservatorships and reproductive rights

“I have an [IUD] inside of myself right now, so I don’t get pregnant,” Spears said at the June 2021 hearing. “I wanted to take the [IUD] out so I could start trying to have another baby, but this so-called team won’t let me go to the doctor to take it out because they don’t want me to have children. So basically, this conservatorship is doing me way more harm than good. I deserve to have a life.”

What Spears is enduring here is forced sterilization, a procedure with profound physical and psychological effects. Across the globe, people with disabilities are subjected to forced sterilization nearly every day. This is essentially a part of the eugenics-based practices of population control, attempting to prevent children from inheriting disabilities.

Forced sterilization for women with disabilities is technically legal in the United States. In the 1927 Buck v. Bell case, the Supreme Court ruled that a state statute allowing compulsory sterilization of people with disabilities did not violate the Fourteenth Amendment as long as it was “for the protection and health of the state.”

Supreme Court Justice Oliver W. Holmes ruled in favor of the decision and stated that “three generations of imbeciles are enough.” This statement harms people with intellectual disabilities or mental health illnesses the most — those who are too often wrongfully referred to as “feebleminded.”

Although the Americans with Disability Act (ADA) of 1990 significantly discouraged and reduced the number of coerced sterilizations performed, the Buck v. Bell decision still stands to this day. An estimate of 70,000 people with disabilities were forcibly sterilized as a result of the ruling.

Attempting to end conservatorships is a Catch-22

A recent New York Times investigation revealed that Britney Spears had attempted to get out of the conservatorship earlier and more often than not over the past 13 years. This directly contradicts her father’s sentiments that he “would love nothing more than to see Britney not need a conservatorship.”

Long before Britney Spears even came into the picture, disability rights advocates and disability justice organizations have been fighting to reform guardianships. Advocates say conservatorships often violate the civil rights of people with disabilities, but remain extremely difficult to terminate.

To get out of a conservatorship, the person needs to prove to the judge that they are now fully capable of managing their own affairs. However, once the person is deemed incapacitated, it is nearly impossible for them to prove that they’ve gained the skills and knowledge to live independently.

What’s more, the petitioner is not necessarily entitled to a lawyer to get out of a conservatorship. And depending on the restrictions the conservatorship imposes, the person does not even have access to the courts, especially if the guardian does not agree that the court order should be lifted. It presents itself as a Catch-22.

In Spears’s situation, her lawyer, Samuel D. Ingram III, earned $10,000 a week for doing essentially nothing. So, it was most definitely not in his best personal interest to grant Spears her request to terminate the conservatorship.

If a celebrity with insurmountable fame and fortune like Britney Spears could not terminate her conservatorship for over 10 years, what hope does an average person with a disability have?

“I truly believe this conservatorship is abusive … It is my wish and dream for all of this to end,” Spears said during her June 2021 hearing. “I want my life back.”

A better alternative to conservatorships

Before Britney Spears’s case, the general public probably did not have the slightest idea of what a conservatorship was. With the sensationalized, although much needed, attention about the misuse of such legal power, the general public must become aware of how common it is used to take advantage of or take control away from people with disabilities who are fully capable of managing their own affairs, especially those who are multiply marginalized and who are not celebrities.

Disability rights advocates have been demanding a better alternative to conservatorships: supported decision-making. In this case, the individual with a disability has a network of people they trust to help them make decisions — from managing assets and balancing checkbooks to choosing a place to live — instead of having court-appointed guardians to manage their affairs.

Everyone, with or without disabilities, relies on advisers, family members, friends and colleagues to make decisions in their daily lives. So, there is no need for an evasive system like conservatorships to protect or assist people with disabilities. Britney Spears does not need to be tied in a conservatorship, nor do thousands of people with disabilities. Disability justice means dismantling public perceptions that enable the abuse of people with disabilities.

To free Britney is to free all those who’ve been forcibly placed under conservatorships and guardianships.

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