Katie Tastrom

Hiring Disability Consultants Can Save You Millions. Looking At You, Hunters Point Library.

Posted on November 14, 2019June 15, 2023 by Katie Tastrom

The Hunters Point Library is the most expensive branch of the Queens Public Library ever built, but it’s not known for its books. It’s known for its stairs. The library has incredibly steep steps that allow for stunning views—for the visitors who can access them. There have been tons of complaints about the building, including about its inaccessibility. Many of these issues and headaches could have been avoided if the architects had hired a disability consultant.

A disability consultant is someone who is hired to provide input about accessibility and other issues that may affect disabled people. We have different backgrounds and can be hired based on specialization. For example, I have a lot of experience in the non-profit world, so one of the things I focus on is helping non-profits and other social justice organizations become more accessible. I have a disabled writer friend who specializes in sensitivity reading, so she is hired by (usually non-disabled) authors to help them make sure their portrayals of disability are accurate and not problematic. Depending on what disability-related insights you need, there is someone with the experience and knowledge to help. And while it’s not a requirement for disability consultants to be disabled, there is nothing that can substitute for lived experience.

I need to stress that this is a profession, and that disability consultants need to be paid for our work. Since the world we live in is often incredibly ableist, expertise on how to include disabled people is not valued, and we are frequently asked to do this work for free. Keep in mind that many of the people with the lived experience to offer the most useful guidance may not work for an agency or organization because of their disability-related needs.

However not all disability consultants are rooted in the same framework. There are many professional disability consulting agencies and individuals out there who can tell you how to be compliant with the law, but there are not nearly as many of us who incorporate Disability Justice principles into our work. Disability Justice is a set of ten principles identified by Patty Berne that include interdependence, intersectionality, and sustainability. Using this framework, the goal is not to just adhere to the laws around access and inclusion, but to meaningfully welcome disabled people as full participants and leaders.

Pretty much any attorney with expertise on the Americans with Disabilities Act (ADA)—like I am—can help make sure you follow specific building regulations and guidelines, but the ADA is just the bare minimum to be legally compliant. So, you end up with problems like the Long Island City Library, which technically complies with the ADA, but is still a nightmare for disabled people and a lot of nondisabled people too.

In fact, nondisabled people would also have greatly benefited from disability consultants taking part in the library project. Families with young children need space to navigate strollers, just as wheelchair users do. There are people who may not even identify as physically disabled, including aging folks, whose bodies cannot handle those stairs.

And even if you truly don’t care about accessibility, hiring a disability consultant just makes financial sense! The Long Island City Library initially cost $41.5 million dollars. I’m not sure how much how much these design mistakes will ultimately cost, but I can guarantee it will be much more than it would have cost to hire someone to avoid these mistakes in the first place. Although it’s after the fact, the Queens Public Library should at least learn from their mistakes and hire a disability consultant to help them remediate some of the problems.

For that matter, this library fiasco highlights why it’s so important to hire disabled people for non-disability specific jobs. A disabled architect would never have made this mistake. (And no matter what the architectural firm that worked on the library says, the inaccessibility of the library is indeed a mistake.)

Disabled people and disability consultants should be a routine part of the experts hired for any project or organization that wants to be accessible and welcoming to disabled people. We could even save you millions.

Activism and Advocacy

About

Katie Tastrom

Katie Tastrom is a disability lawyer, writer, and activist. Her work has appeared at Slate, NBC News, Ravishly, and others. She writes frequently about living with chronic illness. You can find more of her work at katietastrom.com.

About Rooted In Rights

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Lack of Insurance Coverage for Medical Marijuana Can Leave Some Users Behind

Posted on August 28, 2019June 15, 2023 by Katie Tastrom

As a disabled New Yorker that relies on medical marijuana for pain control, I was so happy to hear that Gov. Cuomo recently signed a bill that decriminalizes possession of small amounts of marijuana. It would also crucially allow some victims of the drug war – who are disproportionately people of color – to have their records expunged. As more states continue to decriminalize and legalize marijuana, I am getting increasingly worried that we are once again leaving disabled people behind by not fighting for marijuana used for medical purposes to be covered by insurance.

Before this law, New York had only legalized medical marijuana for people with certain conditions, including chronic pain. So, both fortunately and unfortunately for me, I have chronic pain caused by both fibromyalgia and an autoimmune connective tissue disease. After paying several hundred dollars to doctors and the state, I was able to legally buy marijuana at one of the licensed dispensaries in the state.

I’m going to be honest here, I had smoked plenty of weed before I had a prescription. But I didn’t love it and it often made me paranoid. I went many years without smoking, so I didn’t think to try it when I first got sick. However, once I could get cannabis in known dosages and specific strains, I could take small doses that were high in the anti-inflammatory aspects (no pun intended). It changed my life! Up to this point I would spend many evenings sobbing in pain, but the marijuana was able to take enough of the edge off to keep me comfortable.

I could go on about the ways that cannabis has positively impacted my health: without marijuana I would need to rely on more dangerous methods of pain control. I also would be mostly unable to eat as some of my medications make me nauseated. While it’s not a miracle drug like some people claim, the quality of my life greatly increased after I started taking medical marijuana (usually in capsule form). The problem? It’s ridiculously expensive and insurance doesn’t cover it.

Obviously, some state governments understand that cannabis has a legitimate place in medical care as that’s the reasoning behind allowing and creating medical marijuana programs. Yet no major health insurance plans cover it. That means that only people who are wealthy enough to afford to pay out of pocket are able to access to medicinal benefits of the drug. Individuals differ, but I’m pretty sick, so I need spend about $500 a month on medicinal marijuana to keep my pain at a baseline level.

Keep in mind these same insurance policies cover opiates and other medications that may be more expensive, dangerous, and/or less effective than marijuana. I also want to be crystal clear that advocacy for insurance coverage of medical marijuana should in no way detract or take away any resources from the fight to decarcerate people with marijuana convictions, expunge records, and otherwise tear down the prison industrial complex. It’s important to note that because of the way that disability and trauma work, the same people most at risk for incarceration may also those that are most at risk of having chronic pain, and therefore perhaps benefiting from medical cannabis.

I don’t think I would be as angry about this if it weren’t for the way that abled marijuana activists used disabled people to open the door to legalization of recreational weed through medical marijuana programs. As a lawyer and longtime activist, believe me when I say that I understand that there are hurdles to making insurance coverage of cannabis a reality (especially under public insurance like Medicaid). However, it’s still important that we work towards all people having access to the medications and treatments that work best for them.

Health

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Katie Tastrom

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Here’s Why the Government Absolutely Should Not Monitor the Social Media of Disabled People

Posted on March 28, 2019June 15, 2023 by Katie Tastrom

The New York Times recently published an article about a proposal that would allow government administrators to use evidence taken from social media to deny or revoke disability benefits from applicants. As someone who worked as a Social Security Disability attorney before I became too sick to work, and occasionally writes freelance about these same issues when my health allows, this is a terrible idea for a number of reasons.

First, it’s important to understand a little bit about disability benefits. For simplicity’s sake I will focus on one program, Social Security Disability Insurance (SSDI). SSDI is the program that most workers and employers pay into and you can only collect benefits once you have contributed for a long enough period of time. Essentially, it’s an insurance program like your car insurance or health insurance except it is run by the federal government. Increasing scrutiny on applicants by accessing their social media would be like your car insurance company combing your Facebook after a car accident. Geico could use a picture of you at a party holding a beer to deny your claim for a car accident that occurred two weeks later.

To collect benefits, you must prove that you are “disabled” as defined by Social Security law. As you can imagine, there are tons of laws that determine what specifically has to be proven, and they are just as fascinating as any other area of Social Security law. Essentially, workers need to prove that they are unable to work due to a health condition that is expected to last one year or more or result in death. “Work” in this context means full-time work that is “regular and sustained.” (This is of course defined to death in case law and regulations.)

So in my case, I have chronic illnesses that flare up sometimes. In the past I have been able to hold jobs for a month or two, but then my immune system freaks out and I’m in bed for days, weeks, or months. Under the law, this should qualify me for benefits. However, in practice judges make the requirements so strict that I have seen truly disabled clients be rejected for benefits because they are able to take care of their basic hygiene, feed themselves, have kids, or post on social media. Allowing social media posts to be included as evidence is another way for judges to find a pretext to deny benefits even when a person qualifies under the law.

Another issue is that I, like many disabled people, have good and bad days. Sometimes I can dance for a little bit. Sometimes I am unable to walk to my own kitchen. Which days do you think I am posting about more? Of course my social media will make it look like I’m able to do more than I actually can, just like everyone else’s social media makes them look more active, cooler, and richer than they really are.

Disabled people are already frequently isolated and are likely to rely on social media to have connections with other (disabled and non-disabled) people. When I am too sick to socialize, Facebook is a literal lifeline at times. Forcing us to quit or be constantly paranoid that something we say or do will be used to cut off our (meager) benefits.

This idea is also a terrible use of resources. The government will need to pay for the increased oversight. These resources could be given to disabled individuals directly instead of being used to bloat the government system that the Trump administration pretends to be against. Especially when the incidence of disability fraud is less than once percent. The oversight will likely cost more that the money saved by actual fraud.

Even if there is a cost savings, we can’t just look at the bare numbers when we make decisions about these programs. These programs exist as an agreement that our country has made to its citizens and those who genuinely qualify for disability should be able to receive the benefits that they paid into. While increased social media surveillance of beneficiaries may reduce the number of people receiving benefits, many of us who are actually qualified under the law will be disenfranchised. If this goes into effect, money that should go to disabled people will instead just go to employ surveillance which won’t help anyone.

Policy

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What the Media Got Wrong About Selma Blair

Posted on March 19, 2019June 15, 2023 by Katie Tastrom

If you follow pop culture at all, you’ve probably seen recent coverage about Selma Blair, an actress diagnosed with Multiple Sclerosis (MS) who attended the Oscars with her cane. While Blair has said some important things, much of the media coverage surrounding her diagnosis and public use of an assistive device has done a disservice to many of us in the disability and chronic illness communities.

I want to be very clear that none of this is the fault of Blair herself. As someone with chronic illnesses that seem to be progressive (though unlike Blair, I have not had access to the diagnostic services for anyone to be entirely sure what is going on), I really appreciate her talking about living with MS and relate strongly to many parts of her experience.

However, the media coverage and what interviewers have seemed to focus on the same old disability tropes of: inspiration porn, being lauded for being a “good sick person,” and using atypical examples to generalize about what it is like to be disabled.

Inspiration Porn and “Bravery”

Disabled people do amazing things every day. We take care of people and do art and start campaigns and survive abuse. However, something doesn’t become “brave” or inspiring” just because a disabled person does it. Selma Blair going to the Oscars is not brave. Selma Blair living her life is not inspiring. These attempts to frame disabled people as courageous is such a common problem for disabled people that the late disability activist Stella Young popularized the term “inspiration porn” to describe it.*

You can see the inspiration porn dripping from headlines about Blair. E! News’s headline reads: “Selma Blair’s Brave Battle With Multiple Sclerosis Has Changed Her.” It was indeed very brave of Blair to talk openly about her disabilities, but it is not brave of her to exist as a sick person. (Except sick people don’t live, we “battle.”) KQED calls Blair’s bravery “awe inspiring.” (Once again, her look was awe inspiring, but her “bravery” in attending an important professional event? Not so much.)

Sometimes when people find out about my illnesses they compliment me on how “amazing” it is that I did stuff like finish law school and have kids. There are definitely remarkable parts of those experiences, but just because we’re disabled doesn’t mean the bar needs to get lowered for us (except when we literally physically need a bar lowered for us). Since I have the privilege of my disabilities usually being unseen by most people, I’m not subjected to as much of this as my visibly disabled friends. We know that people are trying to be complimentary, but it’s incredibly patronizing and can be actively harmful for disabled people.

“Good Sick Person”

When you are disabled in ways that are not visible to most people, there are certain rules. Well, not so much rules as catch-22s. If you do anything, people say, “you must not really be that sick.” If you don’t do anything, people say “you would feel better if you did something.” All activity is simultaneously too much and too little.

Disabled people are always supposed to have a good attitude about stuff. We can’t be angry about the way doctors treat us or depressed about the ableism we have to face. In the Vanity Fair article about Blair, the author talks about how the relief Blair finally felt when she was diagnosed, and then, “there were 10 minutes of tears. Then she had to get back to business.” The subtext is that even when we receive life changing news we should not take the time to process or grieve or celebrate. Good sick people don’t have time for emotions; we need to get to inspiring people!

To be a good disabled person, you are only allowed to be disabled as long as it doesn’t interfere with anything. Using an assistive device is great as long as it doesn’t require changes to the building. Proving my point, the author of the Vanity Fair piece notes “throughout the course of our three-hour conversation, Blair offers only one complaint about her MS diagnosis…” The problem with this is that she actually had a lot of complaints related to her MS diagnosis, as the author notes throughout the article. (These complaints include doctors not taking her seriously during the diagnostic process, the way that people with disabilities are treated, extreme physical pain, etc.) The other problem is that the article glosses over Blair’s own words to paint a picture that is not the reality that Blair is explaining in order to keep abled folks comfortable.

Pretty much every disabled person I know is forced to take into account how our symptoms are perceived by others including employers, doctors, friends, family, benefits agencies, and caregivers. When I was focusing on Social Security law, I learned about a body of case law called “Sit and Squirm.” It all centers around how disability applicants show or don’t show pain during their hearings and whether and how the judges can take that into account. If applicants don’t “perform” in the proper way (not too much, but not too little either!) then it could affect whether they get benefits or not.

Atypical Experiences

Blair is a thin, rich, white Hollywood actress. Thus, her experience will be very different from the majority of disabled people who don’t have the resources she has. Now, I’m not asking Blair to do anything besides share her experience. But I am asking the media to put this experience in context. Some of the most relatable parts of her story were glossed over for the feel good atypical parts.

For example, the Vanity Fair piece talks about how Blair disclosed her disabilities to her employer and was met with a supportive response. That’s great! but many disabled people (myself included) are unable to get jobs because of our disabilities. The disability unemployment rate is double that of nondisabled people. After I went “public” with my disabilities (i.e. wrote something that would show up in a google search of my name), I basically became unemployable.

Another part of Blair’s story that so many sick and disabled people have found relatable is her battle to get her diagnosis and how doctors didn’t believe she was as sick as she was. This is an incredibly important point and something that Blair seems to indicate informs a lot of her experience, yet is generally overlooked in the coverage.

Blair also makes great points about the fear of being open about what’s going with your body and how hard it is to find clothes that are accessible.

All of that is to say, Blair makes clear that the problems from her disability are not actually caused by MS, but by an incredibly broken medical system and society. Everyone wanted to focus on the cane she was using at the Oscars, but the cane was not the story. The story is that even someone who has all of the access in the world still had to go to several doctors until her symptoms were fully believed, and is now up against the same ableism as the rest of the disability community. And aside from all that, we also need to ask: why was a young person on the red carpet with a mobility device such an anomaly in the first place?

It’s time for the media to start telling accurate stories of disabled people, rather than just focusing on the parts that make abled people feel good (mostly about the fact that they are not disabled). It’s time to start looking at the whole picture.

*Following publication, a reader noted that the term “inspiration porn” was also used here prior to popularization by Stella Young: https://radicalaccessiblecommunities.wordpress.com/2012/02/14/inspiration-porn/

Media

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Sex Work is a Disability Issue. So Why Doesn’t the Disability Community Recognize That?

Posted on January 4, 2019June 15, 2023 by Katie Tastrom

Sex workers face enormous risks of violence both from the police and from clients, and they are about to face more. The Fight Online Sex Trafficking Act/Stop Enabling Sex Traffickers Act (FOSTA/SESTA) just went into effect, a law that makes it possible for websites to be held civilly and criminally liable if their platforms are used to advertise prostitution. This includes consensual sex work. In preparation, many platforms are banning sexual content which can directly lead to more violence against sex workers, especially disabled sex workers. Here’s how: Lots of sex workers use online platforms to advertise and promote their services. Online tools also provide a way for sex workers to alert each other about dangerous clients and can help give sex workers a way to screen them out. As online sex work resources dwindle, sex workers will have less available resources for screening. Combined with the loss in income from less advertising, this may cause sex workers to be more likely to accept potential dangers that they did not have to face previously, which can in turn lead to more violence, rape, and murders of sex workers.

While the sex work community has been vocal and fighting against these new changes, other communities that should be supporting them are suspiciously silent. Specifically, the disability community. A huge piece that tends to be missing from conversations around FOSTA/SESTA is that a large number of sex workers are also disabled. Disabled (and other multiply marginalized) sex workers are likely to feel the effects of increased violence more acutely. As such, I believe that in order to work towards true disability justice, the disability community needs to understand that sex work is a disability issue and we need to put our full resources towards fighting all laws that harm sex workers.

Accessibility, Ableism, and Earning a Living

Non-criminalized jobs are often inaccessible to disabled people. Many disabilities, including chronic illnesses and mental health disabilities, involve periods of flares and remissions, making it difficult for disabled people to hold down a traditional job. One sex worker I spoke with, Livia, explained that disability is the main reason that she does sex work. Her mental and emotional disabilities make her unable to work a full eight-hour day and sex work allows her to work only a few hours at a time. She also noted that since sex work “has a relatively high hourly rate [it] also allows me to support myself as a disabled person who can’t work full time and doesn’t receive familial or state forms of support.”

However, Livia, who is able to do street-based sex work, makes an important point: “The access I have to street-based work is predicated on the fact I am physically able-bodied, able to stand for long periods and leave my home to work, and am able to work in a general rather than niche market unlike some of my physically disabled sex worker friends.” As such, FOSTA/SESTA will especially hurt sex workers who have physical disabilities that make working on the street to earn money difficult or impossible.

In a Rewire.News piece from earlier this year, Cyrée Jarelle Johnson noted that disabled sex workers “experience poverty and job discrimination at uniquely high rates.” For many disabled folks, sex work and other underground economies are the only way they can survive. Even disabled people that are able to access some government benefits may be forced to supplement the measly benefits they are provided.

If you are disabled in a way that the government recognizes, and are able to jump through specific hoops, some disabled people can collect SSI (Supplemental Security Income) or SSDI (Social Security Disability Insurance). As the system currently exists, even those that qualify are not given enough to live on. The maximum SSI payment in 2019 is $771 per month. That’s less than $10,000 per year.

While it claims otherwise, the social security system actually disincentives work for disabled people and even small amounts of income can affect benefit payments. Individuals on SSI are only allowed to earn $65 per month before the government begins to reduce their benefits. This means that many disabled people are forced to turn to criminalized work in order to make ends meet because disability payments are not enough and any “on the books” employment.

Trauma and Sex Work

Sex work is dangerous and frequently traumatic. A lot of anti-sex work folks use this to argue against sex worker protections and decriminalization, but they have it backwards. There is nothing inherently traumatic about sex work for those who choose it. What makes sex work dangerous is the lack of protections for sex workers from both dangerous clients and police and the carceral system.

We don’t talk about this enough, but trauma is disabling. As criminalization makes sex work disproportionately traumatic compared to other professions (and yes, sex work is a profession), even if people are not disabled when they start sex work, they may become disabled from the trauma imposed upon them. (As is common in many jobs that are predominantly performed by poor people, especially people of color: e.g. coal mining, the military, meat packing plants.)

Thus, the mainstream disability rights community needs to fight for sex worker rights, including the repeal of FOSTA/SESTA.

Disabled sex workers and those with other overlapping marginalized identities, such as BIPOC and trans and gender non-conforming sex workers, will always be disproportionately affected by these changes. While sex workers who are not of these particular marginalized identities may have more options for other employment or are still able to get by financially without taking risks, disabled and other multiply marginalized sex workers may have no other options. Sex workers are victimized by both law enforcement and dangerous clients. With less online tools, sex workers will be increasingly forced into situations where they are more likely to be targeted, harassed, arrested and abused by law enforcement.

While sex worker rights organizations have been fighting these regulations tooth and manicured nail, they need support. As disabled people and disability justice advocates, we need to understand how disability justice is intertwined with other fights. Disability justice requires advocating for the rights of sex workers to be able to do their job safely.

Disability History and Culture, Employment, Health, Policy, Relationships and Sex, Sexual Harassment and Abuse

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Katie Tastrom

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How Can I Feel Proud When LGBTQIA+ Pride Events Exclude Me?

Posted on June 20, 2018June 15, 2023 by Katie Tastrom

It’s June, which means it’s Pride season! My queer little heart will always get excited about this time of year, but it’s also painful. It’s been a long time since I have participated in a Pride celebration. I’ve identified as queer and/or bisexual for as long as I can remember, with the associated high school bullying and all, and I used to look forward to the parties, parades, and events. Since I got sick from chronic illnesses, I haven’t been able to participate in the events. I am often too fatigued and in pain to get out of bed, never mind leaving the house. I also am extremely sensitive to the sun which means that daytime outdoor activities are not an option.

I am not the only one and this is not the only reason why people who theoretically want to attend Pride events can’t be there. Some disabled queers could attend if the events were accessible (and a disgusting amount are not). Other folks can’t go because the police presence at most Prides makes them uncomfortable or downright traumatized, and Black folks and other queers of color rightly feel unsafe. There are also people who want to go but can’t because they are in hospitals for mental or physical health reasons or incarcerated in jails and prisons. Sometimes people have to work or aren’t able to be out about their sexual orientation or gender identity, or are just sick of how corporate Prides have become.

As a disabled queer person living in a small city I pretty much always feel isolated from other LGBTQIA+ folks. There are months where I am unable to get out of bed, and even when I am well enough to leave the house the only events here are at night which is when my pain and fatigue is at its worst. Sometimes there are no amount of accommodations that would make Pride accessible for me, and sometimes I could attend with the right accommodations. The problem is that no one seems to care or mind that I am not at these events. Though it feels personal, it’s not about me personally. It’s about some queer bodies being valued by Pride organizers while other queer bodies that aren’t.

So, instead of celebrating Pride and hanging out with other queer folks I am in bed feeling bad about it. Instead of having fun times, I have anger. I am angry at how isolated I feel as a queer person who is unable to interact in person with other queer people outside of my family. I’m livid that there are not places I can bring my kids (some of whom are also queer) that also upholds our values of disability inclusion and anti-racism. I’m pissed off that the mainstream seems to care only about the L (lesbian) and the G (gay) in LGBTQIA+. And I am furious that there are so many other queer people like me feeling alone and isolated during Pride because we can’t get out of our beds or our locked wards or our jail cells and no one seems to care. I am not proud.

I have had to work hard to not feel totally isolated from queer community. Some of the things that have helped me to fight the feelings (and reality) of isolation are:

Online Communities – I’ve previously written about depending on online communities to fight isolation and loneliness when I’m too sick to get out of bed. I follow lots of queer people on Twitter, I’m in queer-related Facebook groups, and I reach out to queer friends via messaging and texting. I honestly don’t know what I would do without this technology and am grateful that I don’t have to figure it out.
Be as Out as Possible– I’m fortunate that I am able to be public about my queerness. That helps me to connect to other queer people in passing the times I can leave my house, even if briefly. I may not be able to attend Pride events, but talking about Pride with a nurse at the doctor’s office or wearing something ridiculously queer to the store (or even in bed!) makes me feel better.
Have Queer Friends and Family Over– I am super lucky to live with my queer partner and some queer kids but that’s not always enough. Instead of going to Pride, I try to have Pride come to me by having some queer friends over. Obviously, it’s nowhere near the celebration that Pride can be but a few friends, snacks, and no cops makes it much more accessible to me and other friends who can’t or choose not to do our local Pride.
Consume Queer Media– There’s a lot of great queer media out there. Spending some time watching, reading, and listening to queer stories, especially stories told by LGBTQIA+ folks themselves, can help me feel connected to a cultural tradition of queer storytelling. There is so much out there that it’s impossible to keep up with it all, but here are 50 people to check out.
Participate in Queer Activism– Even if you can’t leave your house, there are things you can do. Categorizing online activism as “slacktivism” is ableist and inaccurate. All of us have things that we can do to fight for a better world. Also remember that like disability activism, queer activism cuts across many different topic areas including mass incarceration, police brutality, racism, health care, etc.

Being isolated sucks, especially when it feels like a choice made for you on the part of organizers. However, Pride is not the only way to feel connected to queer history, culture, and community. Since queerness lasts all year round, so can pride.

Disability History and Culture, LGBTQIA+

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#DeleteFacebook? It’s Not that Simple for Disabled People

Posted on March 27, 2018June 15, 2023 by Katie Tastrom

Facebook has been in the news lately as details have come out about privacy breaches. An organization called Cambridge Analytica is accused of harvesting and using personal data from Facebook to direct political messages to specific users. Rightfully outraged by these privacy violations, many former Facebook users are deleting their accounts and a #deletefacebook campaign is growing. However, it’s not that simple for some disabled people.

My chronic illnesses keep me in bed the vast majority of the time and Facebook has been an invaluable tool to reach out and connect to people. Of course, this is what everyone uses Facebook for. However, when you are disabled in ways that make it difficult to leave your house, Facebook (and similar social media) may be one of the only ways to connect with people other than those you live with.

Social media has been scapegoated for ruining society, but I resent the idea that quitting Facebook will make everyone “happier.” Without Facebook, my isolation and depression levels would be much higher.

The physical and emotional energy that it takes to maintain and create relationships outside of Facebook is more than many disabled people can handle. Facebook gives spaces and tools to connect more easily while using less “spoons” (units of energy). Because Facebook meets nearly all of my socialization needs, deleting my account would be devastating for my mental health and wellbeing.

I decided to use Facebook to reach out to other sick and disabled friends to ask them about how they use Facebook. One disabled friend, Sarah Doherty, wrote that without Facebook she would have “no friends.” Sarah explained that “poverty has made it impossible to meet up with people in public and many community spaces are inaccessible. Because of the poor economy, job discrimination, and being gentrified out of my apartments, I have also had to move frequently and I would feel super isolated except that I stay connected to disability and queer and trans and fat and radical organizer folks and people I love every day on the internet.”

Emily Stremel, another disabled friend, told me: “Getting out to socialize can be difficult for me, so Facebook chat is the main way I interact with people. I’m hard of hearing, so the phone is not the best form of communication for me.”

Even if you are able to easily leave your house and spend time with people in person, Facebook still may be the best way to connect with others with the same or similar disabilities. When I first got sick I relied on Facebook to “meet” other people who had experienced similar medical procedures and had similar diagnoses. I was able to learn a lot about my disabilities and how to cope with the sudden change of lifestyle by reaching out to people in a way that would not be possible without Facebook. It’s not an exaggeration to say that I have seen Facebook groups literally save people’s lives. For many of the most vulnerable people who don’t already have that kind of in-person network to turn to, deleting Facebook would leave a huge void.

Another sick friend, Kristen Wood Hartwell, commented that she “wouldn’t know what she would do” without the support groups that she participates in, both for chronic conditions and for other unrelated topics. “They have provided invaluable support. (Facebook has) fostered close friendships with people in the same boat as me, through terribly hard things.”

None of this makes it okay that Facebook breached users privacy. Everyone should stay vigilant and protect their privacy to the best of their abilities, and people are free to delete any app or stop using any technology that no longer meets their needs. However, calling for a boycott of Facebook ignores the ways that technology can be uniquely important for access.

Activism and Advocacy, Disability History and Culture, LGBTQIA+

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Proposed Changes to Nutritional Assistance Programs Will Disproportionately Affect Disabled People

Posted on February 16, 2018June 15, 2023 by Katie Tastrom

I am disabled and though I am not currently on food stamps, there have been times in my life when I have relied on them. Food stamps have been in the news again lately as the current administration has proposed replacing the current food stamp program with a “Blue Apron style” “harvest box” food delivery service that gives people food directly instead of giving them credits that allow them to buy the food they want at the store.

If implemented, this proposal will be will disproportionately harmful for the disabled people who are twice as likely to be poor than able bodied people. Though the website for the Supplemental Nutrition Assistance Program (“SNAP”) claims that just under 12% of its recipients are disabled. I would argue that that number is too low as they are likely only considering the people receiving disability benefits as disabled and not counting people who have been denied benefits or are disabled but able to work. Either way, a significant amount of disabled people rely on programs like SNAP for literal survival.

People with disabilities may also have health issues that mean we need to be on specialized diets or eating plans, which is another reason food delivery is problematic. For example, people with Celiac disease cannot eat gluten without harmful effects. Many people with health issues are also encouraged to limit sodium. (You know what has a lot of sodium? The canned vegetables that are proposed to be in the boxes.) This doesn’t even count allergies or food-elimination diets that may be part of the diagnostic process.

More often than not, one of my doctors has me eating extra of some foods and less of others. There is no way for the government to be able to respond to these needs. Forcing people to eat certain foods may actually make them sicker and even less likely to be able to find employment that will help them get off of food stamps.

Finally, many disabled people may be physically unable to do of the preparation required to consume the foods that would be delivered. Ingredients don’t just magically become meals. I rarely cook due to pain, fatigue, and problems using my hands. Instead, I make sure we have easy to prepare foods that my kids can cook themselves or that I can grab if I am home alone and need to eat. We all have limited amounts of energy but for disabled people, especially people with chronic illnesses like me, even doing the bare minimum to get through the day (which includes eating already prepared food) is too much for me.

We cannot neglect to recognize how the “harvest box” idea will negatively impact disabled people. The needs of low income disabled people must be part of the conversation. Aside from the fact that disabled people are disproportionately low income and thus more likely to rely on the SNAP program, everyone deserves the freedom to choose food that promotes health and is accessible.

Activism and Advocacy, Policy

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Katie Tastrom

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