To Meet Disability Employment Goals, Disabled People Must First Have Access to Care

A group of people sitting around a table having a meeting, including a white female-presenting wheelchair user.

October is National Disability Employment Awareness Month, so let’s talk numbers: In 2020, 17.9% of people with disabilities were employed in contrast to the employment rate of 61.8% for people without disabilities. Although there have been shifts in employment rates of both populations over time, this enormous discrepancy has stayed relatively consistent. While we often hear about access barriers such as a physically inaccessible workplace or work expectations that disabled or chronically ill individuals simply cannot meet, there’s a huge gap in this conversation that ignores an underlying, widespread threat to our wellbeing as people with disabilities: a system of in-home care that’s coming up short.

Equating one’s worth with employment (and thus production and money) is a pretty messed up thing for a culture to do. Not everyone can “work” in the manner we envision work, for a multitude of reasons. But here we are, in a state of reality where disability rights activism often relies on language such as “disabled people can contribute to society and the workforce if barriers to accessibility are removed!” And I get it, because trying to advocate for policy change with legislators and others whose top priority is economic growth means you have to speak their language, at least to a degree. But the truth remains, and it’s worth reminding ourselves of it: equating worth with employment harms those who aren’t employed due to forces beyond their control. And for people like me who rely on caregivers for daily living activities, a force beyond our control–a barrier to employment–can be the lack of coverage of the care needed to get out of bed, ready for the day, and physically to and from work, and personal cares (like using the bathroom and eating) during work.

For the past year and a half, my family and I have been trying to figure out how my care will be covered after I finish graduate school (which I’ve since done) and become employed (which I’m working on). I receive the maximum number of hours of the type of care I qualify for under the Iowa Medicaid waiver that I’m on, which is in fact not entirely true because the hours of care that I receive are maintained through Exceptions to Policy. This means (as you may have guessed from the phrase) that Iowa Medicaid does not even normally allow for the amount of care myself and others like me need, we have to continually circumvent it via prescribed policy exceptions, which take time and energy to draft and write and get approved. You know, instead of changing the actual policy.

I’ve been in college (undergrad and graduate school) for the past eight years. During this time, Iowa Vocational Rehabilitation Services (IVRS) provided a majority of my personal care attendant hours, as getting my degrees was a part of my “vocational goal.” The purpose of Vocational Rehabilitation Services—which every state has—is to help people with disabilities become employed and enter the workforce. But IVRS will not cover personal attendant hours related to work once I become full-time employed, because personal care assistance is not seen as a “job support” they can continue to provide, despite this being, for me, the most crucial job support of all.

My IVRS counselor and her supervisor continually told me that this is a policy written in the federal regulations of what services Vocational Rehabilitation agencies can and cannot provide, and that any service needed “in perpetuity” cannot be provided. I asked for the federal regulations in writing, they sent them to me, and I was presented with yet another example of a system that simply doesn’t make sense. The supposed reasoning behind Vocational Rehabilitation Services not providing this type of support is that hours of personal care assistance is meant to be covered by the Medicaid waiver you are on. Logically, I don’t disagree with them. But the specific waiver I am on, which is also the waiver that many physically disabled individuals with my level of care needs are on, does not allow hours of care related to employment. Which means, again, we’re talking about a huge gap in care, and in understanding among the services and programs which were put into place to maintain the health and wellbeing of people with disabilities. If agencies and organizations keep pointing fingers, who is accountable?

In response to being dropped by IVRS into a system with no real net to catch me, I have had to cobble together other sources of care. I am lucky to be able to receive this care as someone living in a larger metro area with more resources and agencies, and as someone with a strong support system that continues to advocate for me. But here’s the catch—the hours of care that pay my caregivers the highest at $15/hour are still tied to me working, which means that if I do not work a 40-hour week, I will need to hire caregivers with wages lower than they can make at any entry-level job, such as fast-food or retail. This program also operates on a sliding scale of client participation, which means the more money I earn, the more I’m expected to pick up the cost of this service. Once I make a salary of $38,000 a year, client participation is 100%. This means that I would be expected to pay roughly $30,000 out of my yearly wages to cover a service I need to stay alive.

I grew up hearing that if you’re a disabled individual in the US who relies on governmental services, it’s nearly impossible to live above the poverty line. I never fully believed this when I was younger, my disbelief surely acting as a defense mechanism. But the more I am faced with the impossible scenarios disabled people like myself are expected to navigate, the more I begin to understand just how insidious these systems are, and just how difficult it is to live above the poverty line when you need the level and amount of care that myself and others like me need.

And here’s an even more unbelievable tidbit: my case manager (who, for the record, is a miracle-worker) managed to find another service, In Home Health Related Care, to cover a large chunk of my hours of care lost from IVRS and not covered by Medicaid. Want to take a guess at this service’s standard rate of pay? $7 an hour! That’s below the federal minimum wage, and as such, I’m still trying to figure out how this is even legal.

Having life-sustaining hours of personal care dependent upon working fulltime is unsustainable and contributes to the harmful assumption that we are only worthy if we are “producing” something from which money can be made. I don’t know if I physically can work a 40-hour week, and I know many other disabled and chronically ill people who cannot. Again, who here is accountable?

I am not the only person facing this systemic barrier. I have spoken with other individuals across the country with the same level of care needs that I have, and they are in the same boat, if not a boat that’s sunk slightly lower (pardon the bad metaphor). If they are not living in a location that can provide care coverage related to work, they may not even be able to work because they do not have a personal care assistant to physically help them 1) get out of bed, 2) get to their place of work, 3) help them with personal cares at work. Even if we’re working remotely, we need to be able to get ready for the day, eat, and use the bathroom, and may need assistance getting ourselves and our computer, phone, or other work-related materials set up in just the right spot. And then we may need our computer or pen (or arms!) moved throughout our work. See how it can be difficult to work if you don’t have care?

Strategizing ways to employ people with disabilities and help us become employed (in ways that work for us) isn’t an inherently bad goal. But ignoring how inextricably tied this goal is to personal care assistance for so many of us is foolish at best. At its worst, this translates to the largest minority in the country having one of the highest unemployment rates, and being shut away in our homes or institutions because we don’t have the help we need to live. This isn’t just unethical, it’s dangerous. And it’s a giant, glaring problem in our country that needs to be talked about, and needs to be fixed.

11/1/2021: Updated to address sliding scale of client participation for care services payment

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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We Need to Fix Inaccessibility at Caucusing and Campaign Events

A big blue sign that says "Iowa Democratic Party"

One of the things I miss most about living permanently in Iowa is the constant flurry of activity around the political process. Iowa is the first state to nominate a candidate during primary elections, regardless of party, meaning presidential candidates campaign heavily in our state, making a multitude of visits and holding a variety of campaign events.

The Iowa Democratic Party chooses their candidate through caucusing, which is a cool process in that it encourages discussion among caucus goers, but a not-so-cool process in that it usually takes a few hours and is generally quite hectic. It is perhaps a somewhat archaic undertaking that could use some updating. But there’s one major reason in particular that Iowa caucusing needs to be rethought: it is deeply inaccessible.

In 2019, the DNC rejected the proposal for virtual caucusing in Iowa due to concern over the ease with which hackers could compromise results. While this concern is certainly valid (look at foreign interference in the 2016 election, for example), there is still a great need for a way to participate in the caucusing process beyond being physically present.

In order for me to attend the caucus as a wheelchair user, for example, I would need someone to transport me to and from the location where it’s being held, and I would need to make sure the person accompanying me has a flexible schedule as there is often no telling how long the caucus will take. While this isn’t too difficult for me because I have a wheelchair accessible van and personal care attendants who are also politically involved, this is certainly not the case for every disabled person.

Being able to physically attend an event is not something everyone can do, especially if that event is not guaranteed to be accessible, as many disabled individuals can attest to, and as disability justice organization Sins Invalid explains in their disability justice primer, Skin, Tooth, and Bone. And while it’s likely that caucuses will be held in step-free buildings, permitting wheelchair users to attend, this is just one tiny facet of accessibility and does not take into account all of the needs of voters. For example, are there sign language interpreters for D/deaf voters? Enough chairs for people with mobility impairments, chronic pain, or fatigue? Quiet rooms to go to for individuals who are sensitive to overstimulation?

Perhaps these needs seem inconsequential because the majority (if not all) of the individuals you have seen caucusing in the past are seemingly nondisabled. But if caucuses are inherently inaccessible, of course the sample of voters in attendance are likely nondisabled, or not visibly disabled. We want to be in “the room where it happens,” to borrow a line from Aaron Burr in Lin Manuel-Miranda’s Hamilton, especially considering this “room” is where decisions on disability policy happen–decisions that impact our lives in every way.

The Central Iowa Center for Independent Living will be hosting an “Inclusive/Accessible Satellite Caucus” on Monday, February 3, the same night as the caucus across the state. Advertised as having an American Sign Language-exclusive satellite caucus onsite, providing activities for children, and having a low-anxiety atmosphere, this is certainly a much-needed event and a step in the right direction for the political realm. However, this event should not be an anomaly, nor should these sorts of accommodations be provided only at this location.

The general inaccessibility of caucuses is illustrative of a larger problem with inaccessibility at campaign events. We need to have more than seating sections that are compliant with the Americans with Disabilities Act; we need full consideration of access needs. Additionally, smaller events such as parties traditionally held at houses (which are hardly ever accessible) need to start being held at public locations. While disability rights policy is becoming something all candidates are now delving into, it’s only accomplishing so much if such important political events exclude those whose voices should be prioritized in these discussions. It is absolutely imperative that true access becomes something not seen as a luxury or “nice perk,” but a necessity.

Yes, making sure everyone can attend political events is going be an extra cost, but campaigns should budget for this. As Skin, Tooth, and Bone asks, if you are not budgeting for events to be accessible, what are you prioritizing over the inclusion of everyone? We all have our work cut out for us this year if we’re going to make sure the 2016 election isn’t repeated. Let’s make sure we’re including everyone along the way.

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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Embracing My Queer, Disabled Identity

A profile of a person in a surrealist, rainbow-colored painting

I realized I am not straight my junior year of college. I had a massive crush on my friend, a girl. I still liked guys, though, so I figured I was bisexual, or pansexual, or whatever you want to use to describe someone who is attracted to all genders. Let’s use queer.

As I began to come out to people as queer, I started wrestling with another realization: some of the friends that I came out to did not see disability the way I did – as simply a way of being, complete and not in need of curing or fixing. And yet, they embraced my sexuality as just that – whole and beautiful and not wrong or less-than. Other people, I knew, would see things in the exact opposite way. They’d be on board with totally embracing my disability, but not my sexuality. How could this be?

Queer theory posits that “being normal requires thinking in only certain ways, feeling only certain things, and doing only certain things. And it punishes those who do not conform, such as those who do not look normal, or love the right kind of person, or value the important things” (Kumashiro, Against Common Sense). I learned about queer theory before I learned of my queerness, but I fell in love with the ideas immediately, felt home inside the words. While some people who identify as queer feel that being queer is bad and so try to show they are as “normal” as everyone else, others go against this, taking pride in their non-normalcy because normalcy is an oppressive ideal to live under. I recognized this struggle within myself and within the disability community – do I hide the more “disabled” parts of myself to try and pass as “normal,” or am I proud of these characteristics that so clearly set me apart, recognizing that it’s not me who is damaged, but the narrow constraints of what is considered beautiful, celebratory, good?

I understand the danger of conflating two minority groups with one another. But I’d like to ask: If putting disability and sexuality side by side makes you uncomfortable, why do you think that is? Is one of these things shadowed with inherent negativity in your mind and thus you don’t like the other being compared to it? If they are both not things we choose, but rather parts of our identity that we have no control over (although it’s true in some cases that we can choose to embrace or hide these parts of ourselves), how are they, at their core, really that different?

Sometimes I use “not straight” to describe myself, especially when I feel like the listener will not understand the full meaning of “queer.” But queer is what I prefer to use because it is, ultimately, what I am. In Fenton Johnson’s essay, “Future of Queer,” he sets forth that “What defines queer is not what one does in bed but one’s stance towards…the status quo.” To me this doesn’t mean the stereotypical anti-establishment beliefs or radicalism we see of taking to the streets to protest and march, although that could also fall under this umbrella. To me it means being willing to look at reality from a completely new perspective, a perspective that challenges you and makes you uncomfortable. Queer means embracing all of the aspects of myself – both disability and sexuality – that I have been told not to be proud of.

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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Hear Me Out: Being Inspired By Disabled People Isn’t Always a Bad Thing

Photo of Stephen Hawking looking directly at camera. He is in a jacket and scarf and his assistive communication device is in front of him.

When I was a student at the University of Iowa, a friend of a friend did her final project for a journalism class about the unique friendship between myself and a helper. I was happy with how this story turned out, because it wasn’t the stereotypical portrayal of a disabled student that I had become so used to having written about me.  I posted the final story on Facebook, and soon the video began to be shared and reposted and commented on, sometimes accompanied by rather puzzling statements: “Hannah, you’re such an inspiration!” or “Hannah, so cool to see you doing great at Iowa!” or “Hannah, you are such a great role model!”

This frustrated me, because the story was so clearly not of this nature, and yet people were still imposing this reading onto it. However, I had quite a different reaction to these same sort of statements coming from parents of children with disabilities. If they saw this story as proof that their child could attend college, and live on their own, and have friends, then I was glad. I wanted these parents to know that what is holding people with disabilities back from being able to do things like go to college or live on their own isn’t their disability, but the pure failure of the world and society to accommodate them.

Certainly being disabled comes with its difficulties. I don’t think anyone with a disability would deny this, whether they believe their barriers come more from their condition or more from society being poorly adapted to us. However, focusing solely on this aspect of disability strips us of the incredibly nuanced and complex experiences that being disabled and human comes with, and it forces us into caricatures of pity and triumph.

This narrow narrative was evident in the influx of ableist new coverage following Stephen Hawking’s death, from USA TODAY’s original obituary (which they eventually changed), which claimed Hawking did great things “despite his physical ailments,” to CNN’s obituary, which said Hawking “overcame a debilitating disease.” And then there has been the response from both the media and the world, which continually put “Hawking” and “inspiration” in the same sentence. When I saw this response from able-bodied people, I cringed. However, I soon started seeing comments from disabled people also calling him inspiration. This made me take a step back and think.

There are people in the disability community that inspire me – role models that I look up to, individuals whose writing, speaking or art makes me think and grow. When I see these fellow disabled people, like Jillian Mercado, the late Stella Young, or Ruby Allegra, I see myself represented in a realistic, human manner. I see what I am capable of accomplishing. I see what is possible if the disability community keeps fighting for rights and access and representation.

To me, this seems similar to the sentiment that has fueled parents of kids with disabilities to call me an inspiration – a realization of what is possible. This is altogether quite different than what lurks behind the average able-bodied person praising those with disabilities as being heroic – a need to keep us in the category of brave, simplistic, and child-like figures so that they don’t need to grapple with their complacency in society’s continual shoving us off to the side.

Being inspired by someone with a disability, such as Stephen Hawking, is not in and of itself a bad thing. Like being disabled, it’s much more nuanced than a simple black or white, good or bad scenario. But realizing the complexity of this requires self-examination, honesty and most likely discomfort, if you’re faced with a reason for being inspired that doesn’t jive with viewing the disabled person in question as a full, complicated person.

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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I Needed My Caregiver to Keep Me Alive. She Exploited That Power.

Two silhouettes of heads connected back to back. Each has a speech bubble coming out.

Content note: this post discusses the concept of caregiver abuse.

I have a fear of becoming a statistic. I made it through four years of college without being 1 in 3 disabled women sexually assaulted on college campuses, a number recently reported by the National Council on Disability in their report, “Not on the Radar.” I am not a part of the 67 percent of women with disabilities who reported being physically abused, or the 53 percent of women with disabilities who reported being sexually abused. I am grateful for this, but the fact that this is even something to be grateful for makes me sick.

Sexual abuse is like any abuse in that it is an exploitation of power. And when you rely on others to literally keep you alive and assist you around the clock, the exploitation of power can be an all too common occurrence.

When I first moved away from my home and parents to attend college at the University of Iowa, I was suddenly thrown into a position of placing my trust in the hands of about eleven different female students who I hired to get me up in the morning, get me dressed, help me use the bathroom, get me to and from class, eat, and any other activities I needed assistance with throughout the day and night. This was not the first time I had hired caregivers taking care of me, but this was the first time I relied on people paid to take care of me 24/7.

Disabled writer and activist Mia Mingus talks about “forced intimacy,” the concept that those with disabilities have to bare themselves both emotionally and physically, whether they wish to or not, in order to get access to basic, quality care. The fact that I often have to get naked during a new helper’s first shift is evidence of this. It’s not something I care about one way or the other – it’s just the reality of relying on others to help you use the bathroom, shower, and get dressed. Still, to say such instances make me hyper aware of my unique position and vulnerability is an understatement.

Over the course of my year, I began to dread the times when one of my helpers worked. She acted like everything I asked her to do was a burden, and when I would confront her about slacking on some things or the general feeling of discomfort, she would tell me that I expected too much from my helpers. The power dynamic of a situation can vary based on context. I don’t know what a similar situation would look like between two employees in a general workspace, but I do know it wouldn’t have as high of stakes as this same interaction between someone who depends on another to physically care for them and the one who is being paid to do so.

I never feared for my physical safety, which, when looked at in the scope of national statistics, I suppose I am reminded to be thankful for. But I did fear speaking up about being made to feel belittled and ungrateful, because I knew that realistically, I had to keep her on as a helper for the rest of the year, as no one else could fill her shifts. This same helper was also employed by my neighbor and had once refused to help this student use the bathroom. When I brought this to the attention of the agency, they did nothing. I don’t think I ever consciously feared her doing the same thing to me, but deep down, I knew that I had to be careful not to upset the already skewed balance of power between us.

I came up with all sorts of reasons to stay in this situation that made me miserable. Some of these reasons, like the fact that I relied on this person to get out of bed in the morning, made sense. Other reasons, like the internalized belief I should be grateful for whatever sort of care I’m receiving, are lies that wriggle their way into a person’s head whenever you start to doubt yourself and believe what the person you’re relying on is telling you. This is the fault of a society that for so long has not honored bodily autonomy or choice, especially when it comes to disabled women.

Telling this helper I would not be hiring her back the following year was one of the most difficult things I have ever had to do. The first conversation did not go well. She reiterated that I expected too much from my helpers, and warned me against burning bridges. I was on the verge of tears the entire time, and by the end of her shift that night, believed her. I told her she could continue to work next year, but fewer hours. She agreed. But after seeking advice from another helper and friend, I knew I had to tell this helper that I had decided her working with me the following year was a bad idea. The entire afternoon beforehand I felt sick to my stomach and broke down multiple times. I was terrified of how she would react, but I knew it had to be done.

My experiences of being in positions where I was taken advantage of are not the same as experiences of sexual assault or abuse. #MeToo does not belong to me. But sexual assault, sexual abuse, sexual harassment – these all are instances of feeling entitled to something that does not belong to you, instances of taking advantage, instances of using your power to hurt someone else.

As a woman with a physical disability, the concept of consent holds added power to me because of the seemingly small amount of control I have over my body in the first place. It’s not something I take lightly, and it’s not something I see as relating to solely sexual acts. At the core of consent is respect for another person and respect of that person’s ability and right to make their own choices about their bodies and their lives. Consent is a particularly loaded concept in the context of forced intimacy, when there are certain things that disabled people must consent to in order to stay alive. It is a particularly dangerous evil when someone knows this truth and takes advantage of it, pushing people with disabilities to endure toxic behavior because they rely on this person to take care of them.

This pattern isn’t unique to disabled individuals and their caregivers – in fact, it’s a common theme in abusive relationships of any kind, usually one of the main reasons those who are being mistreated feel threatened to stay in the situation. It’s a veiled threat, much like the threat of not being believed if reporting an instance of assault.

This is the thing that so many people seemingly fail to realize about the #MeToo movement: instances of rape do not exist in a vacuum. Yes, it is absolutely necessary to acknowledge different degrees of harm, but it is also necessary to recognize that any level of harm is still harm. Underscoring all instances of sexual assault is a disrespect and disregard of another person’s bodily autonomy. Someone does not sexually assault or abuse another person without first believing it is okay to disrespect and hurt them, or perhaps believing that what they are doing is not harmful or disrespectful at all. And someone does not hold these beliefs without having these attitudes reinforced by society.

As a disabled woman who has been in situations of power abuse, I think we should listen to disabled people’s stories about bodily autonomy and choice. I think we should respect boundaries put in place not just by those of us who have less of a semblance of control over our bodies than others, but by everyone. I think we should be aware of the power dynamics we are bringing to our relationships and be conscious of the privilege our power affords us, and when we’re abusing that power.

These are real peoples’ lives, real peoples’ bodies, real peoples’ hurt. This is so much larger than saying it’s not okay to rape someone. Above all, I think we must be willing to look at our behavior and ask ourselves what we have done to feed rape culture, and what we have done to combat it. We must be willing to actually listen when someone calls us out on problematic comments or behavior, and we must be willing to fix it.

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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

Click here to pitch a blog post to Rooted in Rights.