So where exactly does the end of the Covid-19 pandemic leave disabled folks?

With the new COVID-19 vaccine slowly starting to be distributed across New York State, I’m finally starting to feel a glimmer of hope that this pandemic will slowly start to wean. By the end of the summer, it is very plausible that the vaccine will be distributed widely enough to slowly start quelling the fear that has been lingering since March.  

The death toll will lower. Hospitals will be less overwhelmed. We will soon enter a new stage of survival. Being able to stroll through Target, see my partner and my friends, or go out to restaurants will soon carry less of the intense COVID-panic. And yet, whenever I imagine myself slowly easing back to life as usual, I’m not that excited. 

Are disabled folks just expected to happily jump back into life? Just stroll on back into the world and pretend like everyone wasn’t willingly killing us for months?

It’s not that I never knew that people are either unconcerned with or blatantly annoyed by the disabled before this pandemic– I learned that at a very young age. Even though my generation hasn’t lived through the Holocaust or the Eugenics movement, we are well aware that that ideology never left society. Disabled people are constantly managing small, bite-sized isolated reminders of society’s active hatred of disability. It’s felt in every Medicaid claim denial, in each internet death threat, in every high school bully, in each of the government’s yearly attempt to cut back our services, and in every single well-meaning comment about how much people wish we were more like them or how they would rather die than be like us. 

It’s safer to acknowledge the gravity of each of these occurrences as isolated incidents, so we are still able to move forward thinking that that was just one guy or just one time. When we allow ourselves to feel the collective weight of these incidents, we collapse. We don’t make it through. I’ve spent more than one day lying in bed all morning because it just all started to pile up. In pre-pandemic life, denial or dissociation was almost necessary for my ability to get through the day interacting with others in non-disabled society.

Yet, in post-pandemic times, almost every day has been collapsing under the collective weight of acknowledging how little society regards disabled folks. There’s no escape, no dissociation this time. 

The government has been advocating for herd immunity. Many remain unconcerned, because it’s “only the sick and elderly that will die.” The hospitals treat us last. The hospitals give away our ventilators. The hospitals shrug when we die. NYS decides to hoard COVID positive patients in nursing homes, with little regard for the disabled people already living there. Because of this, thousands die. Our Governor refuses to take responsibility. Our Governor says “who cares?” There are more mask-less Instagram gatherings everyday than I can count. Every week there are new protests about how wearing a piece of fabric to protect others is Anti-American. We aren’t prioritized first for the vaccine, despite being told for months that it was “only us” that would die. Everyday people complain that masks are inconvenient for them. Everyday people like me are forced to hide indoors away from everyone, or risk death if they can’t.  

What we are witnessing is the natural conclusion of a culture built on anti-disability and violent individualism. I can no longer deny or dissociate from knowing that people would probably prefer us dead so they can just carry on comfortably without a concern. I always imagined most probably being entirely content if we all just disappeared, and we are now witnessing the large-scale validation of such. It’s no longer one or two people or instances dispersed throughout the week – this time, all at once, the entire world is nodding along. 

I have a hard time imagine myself going back into the world after being forced to stay inside for almost year because of other’s recklessness. I don’t know how I’m supposed to look people in the eye. I don’t know how I’m supposed to sit across the table from someone from my pre-COVID life and answer to how I’ve been doing. I don’t know how to talk to people that think how I handled the pandemic was simply “overly cautious” instead of necessary. I don’t know how to integrate myself back into a society that was willing to kill thousands of people like me just for capitalism and non-disabled comfort.

I almost want to shake my adolescent and college-aged self, thinking about how desperately I wanted to “fit in” in the non-disabled world, how well I thought I pulled it off. How much I used to value being accepted by non-disabled people. 

I’m a different person than I was before 2020. I always knew a deep hatred of disability was ingrained in our society, but not having to face it this acutely until now allowed me to spend years trying to dissociate it off or intellectualize it away. The idea of us being genuinely valued in society was just an underlying hope that allowed me to survive constant day to day ableism. It was a blanket that needed to be ripped off once and for all, no longer retained for when that reality became too cold to sit in.

We are not helping ourselves by denying the reality we are immersed in. Moving forward from this is learning how to tactfully navigate between crip spaces and the rest of society. It is advocating for a radical reconstruction of our country, one in which healthcare is universal and not dependent on ones productivity, wealth, or able-bodied value. It is no longer molding myself to try to fit something that was never made for me. It’s no longer trying to impress those that, when backed against the wall, are the first to advocate for my eradication. It’s not crumbling under the weight of this or trying to “look for the good” anymore – it’s sitting in the nuance. It’s being able to face other’s disregard for us head on and still manage to believe that we are worthy. It’s understanding what others think of us while still having the strength to know that they are wrong. It’s imagining a better life out there for our disabled brothers and sisters, passing down years of crip wisdom to each other, and doing whatever we can to grasp onto that life out there somewhere that’s better for us, always so close but just out of reach. 

A Call to Action: Help us stop the DOH from making dramatic changes to home care services in NYS

Disabled people have had to put up with the threat of institutionalization and budget cuts to services that keep us alive since the dawn of time. So when the DOH released new proposed regulations that threaten our quality of life, yet again — we knew this was nothing new. BUT what is new, is the DOH trying to do this during an international pandemic.

Long story short: The Department of Health is trying to pass regulations that would change the way home and community based services function in New York State, and if passed, it would greatly hurt our community. Thankfully, there is still a commentary period open until Sept 14th for the public to submit feedback to the DOH about the regulations they’re proposing. We need your help.


Personal Care Services (PCS) and Consumer Directed Personal Assistance (CDPA) are both forms of home attendant programs that allow disabled New Yorkers to live in the community within their own homes and not in an institution. PCS is through a traditional home care agency where you get sent a Home Health Aide. CDPA is more consumer directed, meaning that you get to hire and fire your own workers, set your own hours throughout the day, etc. and it is not under the umbrella of a formal agency. This way, you could have neighbors, family members, friends sign up to be your Personal Care Attendant (PCA).

Last year, Cuomo wanted to ‘defund’ CDPA because of ‘beds available in institutions.’ For years we have been seeing nothing but budget cuts to Medicaid and these types of programs. Our lives and our services are rarely valued and respected.

Considering this backdrop, many activists are wondering if these proposed regulations is just the state trying to find new & creative ways to deny us services and put many of us back in institutions.

What is the DOH Proposing?

  • They want to increase eligibility so it will be much harder for people to get on the program
  • They want to add in more ‘safety checks’ to see if we are ‘safe in the community or could be better served through other means’ (aka an institution)
  • They are changing the yearly assessment process so that we will no longer be able to be assessed by our own doctors. Instead, random medical professional who don’t know us have to determine whether we are worthy of services.
  • They want to use an ‘algorithm’ to determine how many hours of care we deserve, instead of assessing us based on individual needs/our story

This is a very baseline overview of some of what they are proposing. You can find the full regulations here.

For a summary of the regulations, please check out Downstate New York ADAPT’s resources, here!

Please look through their Save CDPA Toolkit that goes over the proposed regulations in laymen’s terms and how to submit commentary. Then you can sign up for one of their Webinars that goes over all of this information and offers a Q&A.

You can register for one of the webinars here:

Wednesday August 26th 10AM:

Thursday Sept 3rd 4:15PM:

Wednesday Sept 9th 7PM:

What do the regulation changes really mean?

These proposed regulations set up an environment where those that are “not disabled enough” do not get services, and those that are “too disabled” have to endure lengthy assessments where it becomes easier for the state to judge them as ‘more fit’ for an institution. 

Those that don’t meet their new criteria will be living in the community without access to care. Those that do meet their stricter requirements for CDPA will be forced to endure an even more arduous yearly assessment process that is designed to discourage people. Those with higher care needs will face the threat of institutionalization at a higher rate.

We will no longer have the right to our own doctors, and be forced into getting assessed by medical professionals that do not have the same knowledge of our lives. 

What can we do?

Read up on DNY ADAPT’s resources and/or sign up for a webinar, submit feedback to the DOH, and share this with your friends. We need as many people as we can to tell the DOH that these proposed regulations are unacceptable.

Some sample talking points from the Save CDPA Toolkit:

  • Tightening eligibility restrictions only makes it harder to for people to access CDPA and a good quality of life, which inevitably will decrease health/well-being and increase medical costs long-term. How many injuries will be sustained during a time where disabled people are denied home care, and how many of us will experience a decrease in our health?
  • We deserve to be assessed by our own doctors that we not only feel comfortable with, but understand the gamut of how disability manifests in our lives. Disability varies day to day, and ONE day of an assessment by a medical professional that does not know us is NOT indicative of the reality of our condition
  • How appropriate is it to pass these regulations during an international pandemic? Covid-19 cases are rising in nearly every state, and it is just a matter of time before it begins again in NY as well. Does the DOH want to be responsible for leaving those with underlying conditions with no home care so they can’t isolate? Or putting them in a nursing home, where numbers skyrocket and so many have died? 
  • It’s not a functioning society if disabled people (who make up 20% of the population) have to fight for their basic needs to be met. When an entire subset of the population is kept out of healthcare, employment, etc., there are larger societal ramifications for the economy and public health. 
  • Able bodiedness is temporary! Eventually these policies will impact most of us, and we should all be concerned. In a functioning society, we should all be able to age with the comfort of knowing we can still live a decent quality of life when we become disabled. 

Where Do I submit Feedback?

We recommend using CDPAANYS’ online tool at:

Or, send your thoughts directly to the DOH: or Phone: (518) 473-7488. FULL contact info available in the toolkit.

Please share with family, friends, neighbors. The more people that write in, the better. Most able-bodied people are unaware of the power the government holds over the disabled, and how much we fight on a regular basis for a life with dignity and equity. We’re still not there, and we need your help. The deadline is September 14th 2020.

Please share the following advertisement:

Response from an actual disabled person to NYTimes article “Is It OK to Dump Him Because of His Medical Condition?”

In this week’s update on “things I read online that should’ve jolted me but, sadly, did not,” some New York woman on the dating scene wrote to the Times advice column asking if she was a “terrible person” for wanting to dump a guy because of his Crohn’s disease. It elicited a response from NYU philosophy professor Kwame Anthony Appiah, who, in summary, advised that “you don’t owe it anyone to accept that burden.” You can find the full article here

It is very depressing for us disabled and/or chronically ill people to watch our value be reduced to a question answerable by the non-disabled in a few paragraphs. It is sad that these types of conversations (happening around us, not with us) are the most common representations we get in media. It’s horrifying that people don’t see the larger issues at play when these questions are asked and answered so contritely, because it reminds us of how out of touch most are with our community. Even during times of such incredible social justice movements, the disabled still remain on the outskirts. 

To this anonymous woman: If you’re asking that question, end the relationship. If you’re writing into a newspaper column to ask strangers to appease your guilt of how much of a burden you anticipate his ‘doctors appointments’ and ‘special diet’ to be, please dump him. Not because of his condition, but because he deserves better. People with medical needs don’t deserve partners that are going to hold our diagnoses against us because they are ‘burdensome.’ It is not our job to waste time on relationships with people who don’t truly want us but stick around because they worry about being “unethical.” Please respect him by letting him find someone else that is better suited to love him. Guilting this woman into staying in a relationship with a man she already anticipates resenting is a disaster in the making. This is how the disabled and chronically ill end up being physically, verbally, and psychologically abused: being trapped in relationships with non-disabled people who consciously (or unconsciously) end up resenting us and our bodies.

I’m unfortunately not surprised people are asking this question. I have used a wheelchair my entire life. I learned much younger than I should have that people consider my needs and my body to be burdensome. That it takes a ‘special person’ to care about us, because we’re just too much to handle or love. The only way we can live through it is by learning to read people well, learning which smiling faces are trying to cover up the fact that their mind is piling with questions like such. We learn to identify who genuinely respects us versus those just tolerating us, so we don’t waste time on people that are closed off to loving us but just feeling obligated to try so they don’t feel like a “bad person.”

I’m sure many were expecting me to lead in with “No, it is not okay to dump someone for their medical needs!” And the truth of the matter is that we don’t live in a society that would even begin to allow me to make that argument. If we lived in a country where non-disabled Americans weren’t so terrified of and personally offended by illness, maybe it would be different. But I can’t make that argument without requiring the non-disabled to change their very closed-minded and unsophisticated view of the disabled experience.

Before even beginning to attempt a response to this woman, we must understand why she and many others ask this in the first place. A significant factor in why many consider us to be so burdensome is because of their own fear of becoming like us. It is because American values are rooted to an unhealthy degree in independence, productivity, and youth to such an extent that people are genuinely anti-disability or any ‘deviant’ body, and completely apprehensive of the natural progression of aging. So when people ask questions like this anonymous woman did, it is saying so much more about them than us. That is something they have to work through on their own before they even consider dating someone with a medical condition. Everyone is not made for each other. Not everyone can handle the disabled experience, and it has nothing to do with the disabled person’s value. 

With that being said, I was not surprised someone asked this question because, as sad as it is, the majority having this mindset is not news to me. Although, I was disheartened to see that our lives are continually reduced to a headline, to a question answerable in three paragraphs by an able-bodied man with seldom any backlash. To most people, our lives and value are just a “healthy ethical debate.” This speaks to the harsh reality I often have trouble facing: the disabled are not yet accepted into the cannon of multiculturalism. We are still a group of second-class citizens that most brush off as burdensome. Even the most educated. Even the people that devote their lives to thinking critically about oppression, discrimination, ethics, and the minority experience in America.

In the professor’s addendum to the article, he did rightfully acknowledge that people with illnesses don’t want to be romantic charities, that the question suggests we are conceptualized as burdens, and that we will all become disabled eventually. But there is still so much left out of this conversation. He could’ve asked her what about chronic illness freaks her out. He could’ve commented on how an American culture that is overly preoccupied with productivity and independence breeds this sort of thinking and fear of disability. He could’ve advised that she should leave him not because of “his medical condition,” but because she is not prepared to love him and he deserves better. He could’ve highlighted that all relationships come with caretaking to varying degrees. He could’ve asked her why she thinks that he would be putting all of this ‘burden’ on her. Or, point out how horrifying it is that we as a society find no issue publishing something that calls an entire group of people ‘burdensome,’ which highlights how far behind the disability rights movement really is. He could’ve taken this moment to point out that if we had a medical system that put people first instead of profit, illness would be less scary to others because we would have better outcomes and access to care. He could’ve advised that it is condescending to stay with someone just to make you feel like a more ethical person. He could’ve noted that the non-disabled perpetuating the idea that we are ‘burdensome’ creates a culture where we get trapped in the cycle of abuse, poverty, being denied our basic human rights, being forced into institutions, and essentially, shut out of society.

Most outside of our community don’t have nuanced enough discussions of disability in the public sphere yet. Hopefully we are soon able to acknowledge as a society that the disabled is still considered a minority group disposable enough to be talked about in such a manner with hardly any backlash. We could’ve connected these mindsets to the institutionalized oppression our people face. We could’ve unpacked how this view of us contributes to the systems at work that keep disabled people devalued, sidelined, genuinely scary to many people, and discriminated against. But alas, another day passes by with hardly anyone questioning the able-bodied agenda. What a privilege it must be to feel so far removed from an experience that it is just an ethical debate in the Times on a someone’s ‘dating value.’

Important Information for Disabled Voters

Image description: dark blue box that reads “vote” with a white envelop sticking out of the top. Background is different shades of lighter blue. Image retrieved from:

Primaries in New York are quickly arriving, and now is not the time to let your vote go to waste. Going out to vote in the time of an international crisis is risky to many, especially disabled people and those at-risk for Covid-19. Below you will find important information on how to navigate voting from home and the absentee ballot.

How to apply for GENERAL the absentee ballot by June 16th:

Click here to download the form. It must be e-mailed, faxed, or mailed to the voting office of your local district, which can be found here.

Alternatively, you can fill it out online if you live in NYC here.

How to apply for the ACCESSIBLE absentee ballot by June 16th:

If you require the accessible ballot that is compatible with screen readers, you must DOWNLOAD it onto your computer from here and then fill it out. You can e-mail it to one of the addresses found here, based on your region of NY.

How to submit your vote by June 22nd:

The ballot will be sent to you, and likely over e-mail if you sent the accessible absentee ballot application. Unfortunately, you will not be able to e-mail in your vote. Instead, you will have to print it, sign it, and mail it to the address provided. You MUST have the ballot postmarked & in the mail on June 22nd the latest.

What will be on the ballot?

You can enter your address on this website ( to see who will be on your ballot to be prepared beforehand.

What to do if you were e-mailed your ballot and don’t have access to a printer:

NY’s chapter of ADAPT is working diligently to make sure voting is accessible to those with disabilities, and we will be updating our community with resources for printing services across NYC and Long Island.

Currently, we are getting in contact with libraries, UPS stores, Staples, and other businesses to see where printing can be done safely, efficiently, and privately. I will update this post as we have gather more information, and we encourage you to reach out with any questions:

How to be a Good Sick or Disabled Person™

Time & time again we’ve seen people who have never had any serious medical conditions thriving on informing the sick and disabled on what is appropriate ‘illness decorum.’ This ranges from jobs threatening to dismiss an employee because they did not handle their illness to their standards, to being questioned if we really need (insert medical treatment/time off/certain accommodations), to judging people on how they behaved during medical emergencies or on days that their illness hits full force.

Why does this happen? Many different reasons, but one of which being that illness is only tolerable to the non-sick if it fits their mold. If it isn’t too scary or disruptive to our productivity, everyday life, and social norms.

Most healthy people are genuinely fearful of becoming disabled or ill. Whether this is a conscious thought or not, it lingers. To counteract this fear of illness, many find comfort in imagining somehow that we as a species can still find ways to be stronger than it: that our minds and bodies alone can still retain some semblance of normalcy and decorum throughout. The idea of being ill to many is only tolerable when the sick are imagined as level headed, in-control, not falling apart emotionally, always hopeful, still finding a way to put our jobs and other people first, and always making decisions based on able-bodied standards of rationality. It’s easier for many to just blame the sick person for doing something wrong when they don’t adhere to these standards than to face the truth: that illness isn’t always something light & breezy that we are all capable of handling with grace, and that you won’t understand it fully unless you experience it.

So when the sick and disabled don’t act in ways they would when they’re having a better day, able-bodied people express frustration, annoyance, or confusion with the sick person… but under that is an attempt at trying cover up a fear of what it would mean to become one of us. What it would mean for illness to not be something we can just ‘pick ourselves up by our bootstraps’ and power through. Illness is only tolerable to the non-disabled when it it on their terms, when it’s not too threatening to able-bodied life. When they watch illness change how a person relates in the world, many freak out. Illness becomes too threatening.

For anyone that has experienced illness (genuine disability or illness, not common ailments that you recover from without hospitalization or intensive treatment) we know this is not the case. Illness is complicated, messy, and not out of the range of normal human experience. Everyone handles it differently. Illness doesn’t look the same everyday or in every person, even if it is the same condition. There are days when you are able to put in the effort to do what you need to, and there are days when rational thinking and concerns about our careers and family and daily life completely go out of the window. I don’t know how many of us have ever had an experience when we have genuinely feared for our lives, but it is not a time of composure and hope that the non-sick want it to be in an attempt to abate the terror they have of being ill.

Illness Decorum 101, as dictated by the Able-Bodied:

We must still have the mental space to think clearly and coherently about our jobs, updating colleagues and bosses in what they deem to be a timely manner. We must have the energy and desire to engage in conversation and update people about how we are doing. We must be grateful to the medical system, even if it might kill us. We must always be hopeful. We must have the mental capacity to think through every option, even in times of panic. Actually, we should never panic. Panic produces “irrational” thought. Rationality is key. We can’t do anything controversial or risky to get medical care, even when backed against the wall. Even if the system is designed to be stacked against us. Even if we may die if we don’t try. We must always be kind. We must never be angry or frustrated. We must always have patience. We should still be putting our children/partners/parents/job/random people first. We must never panic. We must never panic. We must never panic.

The majority setting standards for how minorities should act/behave/think in the face of their own experience is nothing new. Having to explain to healthy people (who will likely never be in our position) why we couldn’t act in the specific mold they made up for us to follow during a medical crisis is nothing new. The way we chose to handle our disabilities/illnesses being held against us by people that don’t have to make the choices we have to everyday is nothing new. Being told what is appropriate behavior by people who have privilege & are setting up the system that oppresses us is nothing new. Many have been fighting this form of oppression for years.

This kind of fetishization of productivity and anti-illness that American culture is sworn into is one of the most insidious concepts to penetrate our minority group. Sick and disabled people die trying to fit this mold. People lose jobs, friends, family, and partners over not fitting this mold. I don’t know the right way out of this as a society, but I can propose this: If we as a country start to provide a humane quality of life for the disabled, if we improve access to healthcare and insurance, if we stop putting youth, beauty, & productivity on a pedestal, and we begin to accept illness as an innate part of the human experience… the fear will go down. We will accept illness and the disabled experience for what it is: natural, messy, complicated, nuanced, human, and none of our business to comment on or hold against anyone if it isn’t about us. We won’t give anymore unsolicited ‘I would’ve done this…’ or ‘I’m offended you didn’t …’ We will stop talking behind backs while smiling to faces. We will trust this isn’t about us, and that people who are experiencing illness are doing their best. We will aim to understand, not reprimand. Hopefully, we will work on our own fear and pride enough to be able to meet people with genuine, unfiltered empathy.

On the intersection of race & disability in discussing police brutality

Our society’s history of racism and ableism is eerily intertwined, ranging from the forced sterilization of disabled & black women during the American eugenics movement, to the Holocaust, to forcing people into segregated spaces, to modern day examples of systemic oppression. Both racism & ableism are forms of discrimination based on one’s body looking different than the majority– but that is not to say those of us fitting into only one of these two identities “totally get” the experience of the other. Because that is untrue. Racism and ableism are just different forms of oppression that often cross paths. The ableism I face because of my disability does not negate the privilege I carry because of my whiteness. The racism one faces being black does not negate the privilege they carry if they’re able-bodied.

Intersectionality is imperative to understand. Those who identify as both black and disabled experience the insidious intersection of both racism and ableism — and this is something that often goes unaddressed in both the Black Lives Matter and the Disability Rights Movement.

This intersection is a much larger conversation to unpack, but in this post I want to draw attention to police brutality. According to the Ruderman Family Foundation, fifty percent of those murdered by cops were disabled. Fifty percent. Disability is defined broadly in this sense: mental health conditions, physical disabilities, chronic conditions, blindness, deafness, etc. And according to Disability Rights Education & Defense Fund, black people are more likely to experience disability. (This is due to environmental and institutional barriers to healthcare, socioeconomic disparities, the psychological effects of discrimination, and a number of other factors).

People of color are far more likely to be stopped by the police than white people. If you are a black person in America, it is likely the police will already think you look suspicious for merely existing. Then on top of that, if you also happen to have some underlying condition that affects the way you relate in the world, you are deemed even more suspicious.

(Trigger warning for following paragraph: specific examples of scenarios disabled POC can have with law enforcement.)

Consider the following scenarios: A black person in an encounter with the police gets asked to put their hands up, but cannot because of a physical disability. A black person in an encounter with the police does not hear the command to turn around because they are deaf. A black person in an encounter with the police does not stay perfectly still because they are blind and cannot see the gun aimed at them. A black person in an encounter with the police does not respond quick enough to their liking because of a cognitive disability. A black person in an encounter with the police has an uncontrollable reaction because their PTSD was triggered by the sirens and yelling.

How many seconds do you think it takes to try to get caught up & explain? How many seconds do you think they’re granted?

Stephon Watts was a black, autistic fifteen year old that was murdered by the police. Laquan McDonald was seventeen. Quintonio LeGrier was nineteen. Kajieme Powell. Ethan Saylor. Brandon Bragg. Jeremy McDole. Tanisha Anderson. There are countless other black people that had underlying physical, invisible, and/or mental health conditions that have died at the hands of law enforcement. I can go on.

Recently, some in support of the police force were attributing George Floyd’s death to his ‘underlying condition,’ implying that someone ‘healthier’ would’ve survived the eight minutes with someones knee pressing down on their neck. Apparently in America we blame people for their own death, all the while circulating videos of them lying on the floor begging. Screaming that they couldn’t breathe. In America, we apparently use ableism to justify racism.

We are tired of hearing stories like this. We are tired of black disabled lives being treated as if they are disposable. If your disability rights or police reform discussions do not include the intersection of race & disability, that is not justice.

As allies we help educate others on these matters– but we must be mindful to not take these stories away from those affected & profit/gain notoriety off of their struggle. It is 2020 and we have no time for white saviors. We are here to share the stories people want the public to hear, join the fight alongside them, and spread awareness in whatever way we can. Recommended next steps for you, my dear readers:

  • Find readings on the intersection of race & disability here.
  • Check out & follow these Instagram accounts run by disabled people of color: @rollinfunky | @Aaron__philip | @wheelielovely | @theseatednurse | @janiralisbeth | @shelbykinsxo | | @girlschronically_rock | @crutches_and_spice | @youlookokaytome | @fidgets.and.fries | @capricekwai | @itslololove | @garrisonredd | @keah_maria | @itswalela 
  • Check out & follow these blogs/websites run by disabled people of color: Ramp Your Voice |Black Disabled and Proud | Black Disability Coalition | Disabled POC tag in the Disability Visibility Project
  • If you are aware of more accounts/websites/readings, comment below & share.

Dear other white people: Here’s what we can do to help fight racism

This is a horrifying time in our world. American racism does not stop for a virus. Police murdering black men in broad daylight does not stop for a virus. So those of us that can put on masks and head to the barricades, go protest. Those of us with financial means, go donate. Those of us that have a platform on social media, go write. We will spread awareness. We will have conversations with people who need to be educated on these matters. We fight, we fight, we fight.

I am further horrified looking at all of the ridiculous posts I see on social media from other white people. This is not a time to make about us. This is not a time to share your opinion of systemic racism, to use “black on black crime” to negate the issues at hand, or to argue that “not all cops are bad” and “not all white people are racist.” Do not say you’re surprised a cop killed George Floyd for no reason. It shows how out of touch you are with the reality of racism in America. Please stop, listen, and be humble. We have a lot to learn, and none of us are perfect or immune to this. An important and relevant quote:

It is exhausting to face oppression. It’s exhausting to educate people on why you don’t deserve to be killed by the police. It should not have to be the job of people being oppressed to go through the emotional labor of educating ignorant people on these matters. To the people being oppressed these conversations hit home. It is a matter of life or death. Meanwhile, we are watching from the sidelines, thinking we’re just engaging in a “healthy debate” on “politics.” This is unfortunately the view point many white people are coming from on these matters.

The American educational system reduced the civil rights movement (and most of our history, honestly) to what is palatable to white people. MLK “peacefully” protesting and Rosa Parks sitting down is considered to be the pinnacle of black activism to most of white America. They don’t teach you about the riots. They don’t teach you that MLK was the most hated man of his time. They don’t teach you that after he was assassinated, there were over a month of riots that resulted in bills finally being passed. They don’t teach you that oppression leaves you feeling like you’re running out of options. They don’t teach you that women didn’t get the right to vote until the suffragettes quite literally set off bombs. They don’t teach you that the Stonewall riots resulted in gay rights finally being acknowledged. They don’t teach you that disabled people didn’t have any rights until they took over an office building and refused to move for 28 days.

You want marginalized people to be ‘peaceful?’ Then listen to us. Don’t make us have to resort to this.

It is not enough to acknowledge the privilege we have because of our race. To be decent allies, we need to use our privilege only in ways that fight & make change. Activism takes many, many different forms. Here are just a few ways to help:

  1. Protest. If you have the time off from work / child care resources / physical means, go. The more numbers, the larger the message. POC have to worry exponentially more than us about being arrested and harassed by the police at protests.
  2. Donate. George Floyd fund. Ahmaud Arbery fund. Breonna Taylor fund. Community bail funds to help protesters. NAACP Legal Defense Fund. Further resources organized by state can be found here.
  3. Support black-owned businesses. Resource to find black owned bookstores, wellness companies, beauty brands, etc. can be found here.
  4. Join/read up on news from activist organizations. Some of many: The Movement for Black Lives. Until Freedom. Reclaim Philadelphia. Antiracist Research and Policy Center.
  5. Educate yourself. Again, it is exhausting for marginalized people to continually have to educate people on why they deserve basic human rights. Don’t expect the black people in your lives to always be ready to go through the emotional labor of teaching people how to not be racist. Learn genuine black history (not the stuff you learned in elementary school), and learn about how racism currently functions. You can access a plethora antiracism and educational resources here. Podcasts, articles, documentaries, you name it.
  6. Educate your family & friends. Have the difficult conversations. Share things on social media. Call out racism when you see it. We have a lot less at stake.
  7. VOTE. Elections are coming. Do not let your vote go to waste, please use it to remove racist and uneducated people out of office. Obviously most pressing is getting Trump out of the White House, but presidential elections are not the only ones that matter. Voting for local government is IMPORTANT. The right to vote took years to attain, and some marginalized communities are still fighting for it.

Please feel free to comment more resources that may be helpful, I will update the list as we move forward. May we work toward getting out of these horrid times. We stand (or sit) with you.

The Myth of the Independent, Middle Class, Disabled Adult: How the healthcare system keeps us financially oppressed

There is nothing more ‘American’ than locking minority groups into systems of poverty, expecting them to be grateful to the government for handing out scraps, and then subsequently blaming them for being ‘leeches’ on a system designed to ensure they remain trapped within it. Disabled people are all too familiar with this form of systemic oppression, and are a group that is essentially treated and classified as second class citizens in this country.

There is a long painful history bubbling beneath this that I won’t even begin to unpack in a single blog post, but what I find myself consistently coming back to as I transition into ‘real’ adulthood (whatever that even means) is the financial control that the government has over people with disabilities that most outside of our community are blissfully unaware of. OR, even more horrifying, are cognizant of but just don’t consider it an issue.

Ultimately, as long as we need services related to our disability, the U.S. government is legally allowed to control our finances. I have laid out below the clear and direct abuse of power that the U.S. government holds over our lives. 

A quick breakdown of the services we need to live:

Many adult people with disabilities (PWD, for short) need assistance with tasks of daily living like showering, using the bathroom, getting dressed, feeding, etc., and thus, home health aides (HHA) or Personal Care Assistants (PCA) are the workers that assist us with these tasks. Also needed by many: home nurses to assist with more medically-focused tasks like working with traches, wound care, etc. Typically, the only insurance that covers these services LONG-TERM (i.e. the duration of our lives, because we will always be disabled) is Medicaid.

We also may need access to physical therapy or occupational therapy to keep up with our health. Typically (and this is being generous), the only insurance that MAY cover this long-term is Medicaid. Private insurance (i.e. able bodied people insurance) only covers PT for short periods of time, because it is designed for ables that have sustained an injury and are trying to get back to their baseline. If you are a PWD that is using PT as maintenance and not working toward healing a injury/post-surgery, you will eventually stop being covered by private insurance companies. So we are left with Medicaid, who, keep in mind, STILL doesn’t cover all PWD for therapy services. Depends on your state/your plan/your luck/the alignment of the stars.

Then there is the matter of medical equipment. My motorized wheelchair that allows me to move independently in the community costs 40K. My partner’s costs 60K. The pricing, manufacturing, and quality of these devices are an entirely separate issue, but keep this price in mind. It needs to be replaced every five to seven years because of its (lack of) durability. Repairs are frequent and expensive. The battery alone on Quantum chairs need to be changed yearly, and costs ~600 dollars out of pocket. SOME private insurance will pay for repairs, and PART of the total cost of the chair. Yet, Medicaid is the most reliable for agreeing to cover the chairs.

Alright, so the only insurance truly available to us is Medicaid. How does that work?

*** This is a breakdown of some of New York’s policies. Every state is different, and many do not have the policies I will discuss***

For us to get Medicaid, we must 1. prove that we are indeed disabled (i.e many, many visits from the state & many, many forms to fill out, & many, many months of waiting), and 2. be a recipient of Social Security Income. SSI is a check from the gov’t every month ranging from roughly 500-800 dollars. Sounds great at first – free additional money, yeah? Nope. Not additional to anything.

If you have any income, you lose SSI. If your bank account EVER at ANY POINT goes above 2,000 dollars, you are flagged and receive a call from the government. You lose SSI. Which is essentially tied to & the precursor for your Medicaid. You are not allowed to have many assets in your name, which includes property, certain amounts cash– you name it. You MUST be living in poverty. It is worth noting that there are some things that are excluded from our resource list, like owning up to one car, a non-business property worth less than 6K (so, nothing in NYC), or certain scholarships used immediately for tuition. Many PWD that turn 18 and go to college enroll in SSI, a time when they’re not working anyway. But what is supposed to happen when we graduate, have student loans, and want to work?

Access to the services we need to survive being tied to ensuring we remain in poverty is inhumane. So the gov’t “tried” to remedy it.

Under 1619(b) of the Social Security Act, some are allowed continued Medicaid-coverage. This means that you can continue services if you have been receiving SSI for at least a month, you’re still disabled, and you need Medicaid to work. BUT the catch here is that you are only allowed to have up to to $46,316 in income.

So the Medicaid Buy-In (MBI) program came along, that was supposed to fix this and be designed for working PWD. Same criteria as above except now you’re allowed to have $64,836 in income for an individual and $87,288 for a couple. Another cute little catch, you’re never allowed to have more than $20,000 for a one–person household and $30,000 for a two-person household at a time in assets.

Then there is Medicaid-Spend Down. This program I know the least about. My understanding of it is that it allows you to deduct certain medical expenses (like doctors bills, medication, home care, or insurance premiums) from your income so that you can qualify for Medicaid. Essentially, if you deduct what you spend on medical bills every month from your monthly income & THAT number meets the cut off for Medicaid eligibility, they will reimburse you. This is done monthly. You will be busy with keeping receipts for all expenses, and having to consistently report your spending to the government. (I read that you must have assets below $15,750 for individuals and $23,100 for couples, but not every resources specifies this.)

And I should make something else clear: not everyone knows about Buy-in or 1619(b) or spend down. Not even the people who work for the government are fully aware, and it is only offered in select states. Social workers and case managers have told me completely varying stories and policies. Unless someone has access to social workers and lawyers that are actually educated specifically on these systems in government (which are sparse), or PWD themselves have the education and knowledge of legal jargon to comb through these policies, many are unaware, and remained trapped in the burgeoning cycle of poverty, paperwork, and waiting.

And as for the people that do have Medicaid-Buy In (MBI) and are allowed to work, you must keep your dreams and aspirations low. You can’t earn anything more than what they allow, and you likely can’t get married because you’ll lose your services if your partner has any money at all. This is the system that keeps PWD from holding positions of power, from well-paying jobs, from higher education. Why would you go for a degree that you would love but leads to a career that pays 70K? If you would need home care while working, you are at risk of losing it.

It’s not just about finances & bank accounts, it’s about quality of life.

New York City is expensive. Living with a disability is expensive. We cannot afford to buy a house and convert it to be fully wheelchair accessible with only 20,000 allowed in assets under MBI. We cannot afford 1,000 dollars out of pocket to pay for a new motor on our chair when we can’t wait the months it would take with insurance. We cannot afford to get married, because our partner’s assets will be held against us. We cannot afford a truly wheelchair accessible apartment in NYC with these income restrictions. Most NYC apartments that are genuinely accessible (big bathrooms that fit our wheelchairs, functioning elevators, kitchens big enough for our chairs to fit in, bedrooms that can fit our medical equipment and still have space for us) cost at least 3,000K a month. That is virtually impossible on that salary.

Maybe some of us are lucky enough to have family in the area. Lucky enough to be forced into living with them forever because we can’t afford a place of our own, either because of money or lack of home health care hours.

Loop holes exist. They are arduous & under-discussed. You need free time, patience, planning, education, and legal assistance.

Sure. There are exceptions. That one guy who applied to that one program and gets half off his rent for a fully accessible apartment in that new luxury building (i.e the only building in his area that’s ADA compliant). The kid whose parents are a doctor & a lawyer and know how to properly get paperwork done, who know what the government is looking for with a fine-toothed comb. That other lady who won a law suit and is set for life in terms of healthcare. Resources are scarce. Millions of people are all fighting for the same exclusive five available spots. This takes education, connections, a support system, and luck.

If you’re on MBI and have over the 65K limit, I’ve heard you can make an Able Account. It is a specific account where you put excess income that won’t affect your Medicaid eligibility. You can contribute up to 15K a year without having to report to the government. There are overall limits of how much you can let accumulate, and even tighter restrictions for those receiving SSI and not on MBI. You are allowed to spend this money on “qualified disability expenses,” which ranges from healthcare, to food, to housing.

Or, a special needs trust. Similar to above except they are pricey and require legal resources, as it is essentially a trust that you keep with a lawyer. Unlike an Able Account that more so functions like pulling money from a bank account, this is much more restrictive because to access it you must contact your lawyer. There are a few different types.

What does this mean realistically for our futures?

It is insurmountable to go through this alone. It is impossible for many to live on 8 hours of care and such strict income limits. Survival, access to services, and quality of life sometimes also depends on the availability of and socioeconomic status of our families. The people with families who can pay the $600 when they need a wheelchair repair are going to have a better quality of life. The person with available parents or siblings to fill in when their allotted 8 hours of home care run out are going to have a better quality of life. But what do we do when our families aren’t available?

It goes without saying that the more physical care you need, the worse off society treats you. If you need help using the bathroom or turning in bed at night and don’t have family to live with, you’re fucked. You will spend the rest of your life begging the gov’t for 24 hour care (because shockingly, you cannot time your bathroom needs to the 8 hours of care they grant you, and shockingly, no one deserves to be laying in bed unable to move for 16 hours, waiting for the next shift). This is a difficult feat. People go to court for this regularly. And get denied regularly. And THIS is how our people end up in institutions.

When we set up a system where PWD have to chose between financial freedom and basic needs, we have failed. When we set up a system where we expect PWD to not work and thus, create policies that prevent them from doing so comfortably, we have failed. When we set up a society where our basic needs are “not worth the funding” and it is instead easier to shove us in nursing homes, we have failed.

And this is exactly why the independent, middle class, disabled person is a rarity. You are either living in poverty struggling to keep SSI & Medicaid, living in public housing & fighting over the ONE wheelchair accessible apartment. OR your family is loaded enough to not need medicaid because they can pay for home health aides & a fully accessible apartment or house. This of course depends on how much care you need – paying for 1hr a day is VERY different than paying for 24. Unless you got money money, you cannot afford that. This dynamic plays into the hierarchy of PWD that even our own community falls victim to internalizing: that the “more abled” you are, the more worth you have and more respect you deserve from the world. This idea does not exist out of nowhere, it is rooted in how we get treated: the “less” disabled you are, the better people treat you, and the easier time you have navigating these services.

You exist in the middle class when you are able to work at least part time, somehow found out about MBI and got accepted into the program. You stay within MBIs income limits & live with family, the house or apartment under someone else’s name. You don’t get married to anyone that makes a livable wage. You don’t set up a college fund for your future kids, and you definitely don’t have much of a savings account. You live at the whim of the gov’t, waiting for their unannounced pop in’s to make sure you’re still not randomly becoming able-bodied, and sit in your lane like the ‘good disabled person’ they want you to be. You beg they don’t cut your hours. You pray that your disability doesn’t progress & you get shipped off to a nursing home when you’re 40 because the state determines you aren’t worthy enough to live in the community with more hours of care. This place to be is tenuous. Terrifying. Given to change at any moment.

This is why we protest. For a life with dignity and humanity.

Unless you as a disabled person grew up with and surrounded yourself with other PWD, you wouldn’t know. Unless you have the time & resources to research all of this, you wouldn’t know. Certainly no one in the public school system taught me how to exist as a disabled adult or prepared me for this at all.

Generally, able-bodied people remain unaware. We get called lazy. We get called leeches of the gov’t. We get called useless. We get pity smiles, and elicit genuine shock if we tell someone that we hold a job. Dare I say a … high power job? As rare as that is for one of us? Oh yes, just wait patiently for the Channel 7 special about you ‘overcoming’ the obstacles set forth by your own damaged, disabled body — they won’t mention the hoops you had to jump through in society to get there. They won’t talk about the system they’ve set up against you. They’ll only discuss how much your “body hinders you,” so they’ll feel justified in not allowing/expecting our group to work in the first place. So they don’t have to make anyone challenge society’s view of the disabled.

Yes, we are angry. Yes, we are tired. No, we are not going to deny our disability and sugar coat our lives because it makes people uncomfortable. No, we are not going to ‘remain positive and quiet.’ We have made progress, but we’re not there. These systems are archaic and relying on tired stereotypes that keep our people oppressed. Access to appropriate healthcare should not only be allowed if the government is able to control our finances. Please spread the word. Please keep our community in mind when you fight for civil rights, livable wages, universal healthcare, and marriage equality. I’ll never understand how we set up a society where PWD are viewed as that disposable, meanwhile anyone at anytime is a step away from joining our community.

Helpful resources for those in NY (feel free to leave comments w/ additional):

SSA Resource exclusions:

Section 1619(b) of SSA:

Medicaid Buy-in:

Medicaid Spend-Down: AND

Able Account:

Special needs trust: OR

One of the many things that Amy Cooper reminds us about racism in America

For anyone that hasn’t yet heard, this past Memorial Day weekend yet another white woman called the police on a black man for merely existing in her vicinity and trying to converse. I am never surprised, just deflated and enraged. Christian Cooper asked a woman in the park to leash her dog (as the rules of the park dictated), which instantly sparked in her a reaction that we have seen white women weaponize time & time again in our country’s history. Thankfully, he began to record:

There is Amy Cooper, standing firmly on her feet practically strangling her dog, dangling in this mans face what it would mean for her to call the cops and say an African American man is threatening me. She knew exactly what she was doing & the power that she held in that moment. This is how black men get wrongfully accused and shipped off to Rikers, this is how so many black men die at the hands of the police. No, she is not a Trump supporter, this isn’t the South — this occurred right in our backyard in Central Park.

America’s preoccupation with a two-party system engenders some rather black and white thinking on the part of many Americans, where it is easier to coin one side being all ‘good’ than to look at this dynamic with more nuance. It’s easy to write off the ‘Karens’ of the world as right-winged fanatics, from Republican or predominantly white states, or as ‘crazy Trump supporters,’ but here is Amy Cooper: registered democrat, voted for Hillary, walking through the streets of Manhattan.

Many democrats weaponize their whiteness, and it is imperative to identify when this occurs. We were reminded when Joe Biden said that ‘even the poor kids are just as bright as the white kids,’ when we found out Justin Trudeau and Joy Behar dabbled in blackface, when white democrats “saved” Vietnamese babies from their parents during the war, or NYC’s entire history of redlining. And let’s never forget the “I don’t see race!” card that many white liberals pull in response to all of these instances, as if seeing blackness is the problem, not how it gets demonized.

I can name countless encounters with other white liberals that have said something blatantly or covertly racist, and expected me to not speak against them. To just agree or let it go. It terrifies me to think of how many women I’ve encountered in my life could be the next Amy Cooper. The ones that ‘work with black people’ and ‘have that one black friend’ and ‘never voted for Trump’ and ‘grew up in diverse neighborhoods’ and ‘agree that the KKK is terrible,’ but when no one is watching, when they feel that they can get away with a power trip — they are calculated, strategic, and blatantly racist.

Many of us try to find comfort in hoping that when a Democrat gets back in office, things will “calm down.” All of these attacks on black men, the anti-semitism, the islamophobia, the homophobia — it will begin to decrease. But I don’t think this is true at all. It will still linger, just taking on a new face.

This is not to say that republicans are off the hook. (#NeverForget Trump calling all Mexicans rapists, Tomi Laren coining the Black Lives Matter movement as the ‘new KKK,’ republican news outlets demonizing Kaepernick for trying to bring awareness to police brutality, the muslim travel ban, or how people are still demanding to see Obama’s birth certificate. These examples barely scratch the surface.) This post is simply highlighting that racism transcends political affiliation, and lingers in every corner of our country. And thus, if as members of the democratic party we don’t speak out against the specific brand of white liberal that Amy Cooper represents, we are just as bad as them & a part of the problem.

On being both disabled & a woman: living with the fear of abuse

As mentioned in a previous post of mine, the kind of ableism one experiences in America depends on a multitude of factors, including but not limited to race, class, socioeconomic status, gender identity, sexual orientation, immigration status, education level, age, type of disability, how it was acquired, etc. And thus, your marginalized identities combine to form an exclusive brand of prejudice made specially for you! (Insert snarky and well-timed joke about America commodifying oppression, yada ya)

This is not news to anyone in the disabled community that is well versed in social justice, or at least it shouldn’t be. I often think about how my identities as both severely visibly disabled and a woman impact the kind of prejudice I receive just rolling down the streets of NYC. I didn’t think much into how my gender and identity as a disabled person collided until I went to college, in part because I began to think more curiously about the world & my place in it as is developmentally appropriate for emerging adults, but also because I gained a level of independence that required me to care for myself in a way that I didn’t have to when living with my parents.

I started traveling more on my own. My disability + my womanhood never collided so acutely in my mind until I sat alone in a subway car at night in my wheelchair. I began to keep track of who was staring, specifically how many men. Was it pity? Were they just curious? Is it because they found me attractive or because I was just odd enough to stare at to pass the time?

I quickly learned how to spot when someone would attempt to take a photo. On one instance in particular, I asked a man to delete a photo he had just taken of me on the Q train, to which he responded: It wasn’t of you, it was of your dog. I insisted he show it to me, and there I was in the middle of his screen sporting a short, tight summer dress, with my dog’s head out of focus, somewhere in the bottom corner of the photo. I often wonder why he even showed me the picture instead of just denying it— did he panic noticing the people sitting next to us listening and ready to intervene? Or did he not care and want to flex his power, letting me know he was going to take a piece of me with him?

I became keenly aware of my body, not in the way I had as a teenager when I spent time comparing it to able-bodied friends, but instead in an attempt at self-preservation. I would hold my breath entering subway elevators alone with men. Those elevators are creepy enough with their creaking, grime, and distinct odor that lingers long after you exit, but even more so with a man standing over you, smiling down. Grinning. Trying to talk to you, calling you sweetie. Alone in a cramped space, wondering if he would be blocking the buttons for the entire ride. Wondering how you would even attempt to get out if he tried to touch you. Wondering how long it would take for someone to notice, for the door to open.

I learned soon enough to wait for the men to go in the elevator alone first if there weren’t many others around at night, and to only get in the elevator with one if there was more than one person. I felt a need to hide my body not out of shame, but fear. I would fantasize about what it would be like to be an able-bodied woman on the subway, someone that doesn’t turn heads every time she enters the car, or doesn’t have to yell for people to get out of the way when the only wheelchair space is packed with people standing. I tried to imagine what life would be like not constantly bringing attention to myself. But that’s the thing about being a disabled woman in our society, we are simultaneously in the spotlight and gawked at everywhere we go while also being made to feel that our experience is irrelevant enough to be breezed over. They’re not staring because they’re interested in our lives or what we have to say.

The rates of violence against disabled women are staggering. We are three times more likely to be physically abused or assaulted than our non-disabled peers (1). As many as 40% of women with disabilities experience sexual assault or physical violence in our lifetimes (2), compared to 25% of women overall (3). Even more horrifying, over 90% of people with developmental disabilities will experience sexual assault (2).

Then you factor in race or gender identity, and the numbers increase exponentially. It is known in our community that disabled women of color and disabled trans women (or disabled, trans, women of color) experience much higher rates of sexual or physical abuse than white and cisgender women– but I had trouble finding actual numbers to represent this, which speaks to an even larger issue. As scared as I am about my own safety, I’m one of the lucky ones: white, only physically disabled, cisgender. As a community, we all must individually acknowledge the privileges we hold while working toward equality for all.

Then there’s the reality check I hate to admit: assaults against the disabled are not typically coming from random men on the subway. Of course it still happens & our collective fear is valid, but they’re usually not strangers. Typically, it’s the ones we have closest.

It’s the able-bodied partner we rely on for our care, it’s the step-father caring for their partner’s disabled daughter, it’s the home health aide that visits every weekend, the workers we invite into our homes, the nursing home staff that go under the radar for years. It’s the people we need in our lives the most that find us to be “vulnerable” enough for them to get away with hurting us.

Grassroots efforts have been forming for years to address these major issues in our community and help survivors of abuse, but we should not be the ones having to put in the effort. The longer we live in a world where the disabled are seen as weak and vulnerable, the longer we as a society have loose standards for those who work with us… the longer our community will be targeted.


National Domestic Violence hotline: 1-800-799-SAFE (7233), or 1-800-787-3224 (TTY). Individuals who are Deaf and hard of hearing can reach them at: 1-800-787-3224 (TTY)

National Sexual Assault (RAINN) hotline: 800.656.HOPE (4673)


(1) Iyengar, R. (2015, March 06). Women With Disabilities Three Times as Likely to Be Raped, Report Says. Retrieved from watch/

(2) Sexual Assault Prevention and Awareness Center. (n.d.). Retrieved from

(3) Truman, J. L., and R. E. Morgan. “Nonfatal domestic violence, 2003–2012. US Department of Justice, Office of Justice Programs, Bureau of Justice Statistics.” (2014).