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Good Company

The Cost of Being Disabled

by Imani Barbarin

Good Company contributor Imani Barbarin

Disabled people often experience discrimination in the hiring process, but meeting an employer that believes in your ability to do the job is only half the battle.

Good Company contributor Imani Barbarin is the founder of Crutches & Spice, a blog that discusses the intersection of disability, race, gender, and media.

Sitting in an office in Midtown Manhattan, I’m breathing heavily from climbing three flights of stairs. Like many buildings in the city, it’s not accessible. But I planned for this; I got here an hour early, just in case this was the case. I scoped out the building as best I could, but this type of information doesn’t exist.

Equal opportunity disclosures benefit employers, not applicants. I look around the room and see beautiful girls wearing heels that perfectly complement their outfits. I’m in sneakers that make me stick out. And then there’re the crutches, which gleam like a neon sign in Vegas that says, “I’m Expensive.”

My interviewer comes to get me and looks shocked to see me. He appears to cover this up, likely quickly making a mental note to fire the staircase that was meant to keep people like me out. He has a motivational poster on the wall of his office that says The only disability is a bad attitude. Clearly, it’s the excellent outlook that turns the three flights of stairs to his office into a magic broom that I lacked in getting there. We make small talk, but he never asks me about my résumé. I try to work my achievements into the conversation, but all I get is a condescending “good for you.” He says he’ll call if he decides to take my application further. He doesn’t call. Maybe I have an attitude problem.

Finding Work That Works
I’ve spent the better part of my life trying to come to terms with who I am as a disabled person, but nothing makes me more acutely aware of what the world thinks of a Black disabled woman quite like a job interview. Sitting in waiting areas thinking of how I can downplay or make a joke or (God help me) present myself as inspiring to the person in front of me so they take another look at my résumé is not how I anticipated spending huge chunks of my time as a kid. To their credit, my parents tried to warn me, “You will have to work twice as hard to get half as far.” But, against my better judgment, and the entirety of my life experience, I find myself falling back into optimism time after time.

About two years ago, when I was weighing my decision to attend graduate school, I struggled with the prospect of just how much opportunity would be available to me upon graduation and whether or not it was quite worth it. I jumped, and semester after semester, I saw graduates in the classes ahead of me juggle awesome job opportunities as a voice in the back of my head reminded me that the same would be a stretch for me. I faithfully got a head start on the job-application process, filling out several a full six months before my graduation to familiarize recruiters and hiring managers with my résumé. Ever the dutiful applicant, I made sure to disclose my disability in the equal opportunity section. In six months of applying for jobs with a goal of fifteen applications a week, I received only one call inquiring about my résumé. Once I stopped disclosing, however, I was able to secure six interviews within a week.

My experience is not an isolated anecdote, and according to the Bureau of Labor Statistics, the unemployment rate for disabled people is double that for the able-bodied. While the passing of the Americans with Disabilities Act gave disabled people protections against discrimination in the workplace, the law did little to change the attitudes of the general public toward them.

While getting in the door is a hassle, it’s only half the battle. Sometimes getting the job means compounded financial constraints that can lead to losing health insurance for those self-employed, restricting personal opportunities like marriage, or leaving hard-won employment because of a lack of accessibility, discrimination, or income that’s too high to keep assisted health coverage.

With all that is stacked against disabled people, employment can seem daunting and financial stability out of reach. But even with the acknowledged difficulties, there are disabled people managing jobs and independence.

Gregg Beratan

Gregg Beratan

Gregg Beratan, who is the manager of government affairs at the Center for Disability Rights, feels fortunate to be employed. He hated the job search, feeling as though the entire process triggered imposter syndrome—as if he were taking advantage of all the executive-functioning issues he’s spent a lifetime dealing with. During his last unemployed period, he spent nearly a year looking for work while working freelance—taking editing gigs to make ends meet.

Once he landed a position, it was an excellent match. “I am blessed to work in a disability-led organization that is very good about accommodating employees. I have never felt more supported and embraced by an employer.”

While acknowledging the additional financial burden placed upon disabled people simply for being, he admits that most people are still reeling from the recession. “I think in the post-crash economy, everyone’s finances feel tenuous and insecure. I can’t say disability shapes that, particularly.”

With experience living abroad, Beratan found it insightful that the government in the United Kingdom made a disabled living allowance available to people with disabilities in an effort to mitigate some of the financial stresses. “I do wish people understood the additional costs placed on disabled people, because ableism in society [means people haven’t] considered us or have chosen to ignore us.”

With so many things functionally out of reach for disabled people, the cost of access comes from their pockets. “Accessibility is an afterthought to so many people. There are so many additional costs.”

Rebecca Cokley
Rebecca Cokley

When Rebecca Cokley left her position at the end of the Obama administration, she had a plan. After serving for the entirety of the administration, she took careful steps to transition and give herself an opportunity to decide what was next. Knowing exactly how much financial flexibility she had in looking for a job, Cokley took a job as the director of the Disability Justice Initiative at the Center for American Progress.

Like Beratan, Cokley felt well received by her new workplace. Many disabled people who have jobs feel as though they are either outright denied accommodations or are slowly pushed out of their positions once employers become aware of the additional costs associated with assistive technology. (It’s important to note that the ADA legally requires workplaces to make accommodations available to disabled employees.) Gratefully, this time, that was not the case. “My boss has been an ally of the disability community for a long time and was very open to talking to me about what accommodations I needed, and I didn’t face any pushback,” says Cokley, who transitioned from consulting to this full-time position.

Like many disabled people, the health insurance associated with employment was nonnegotiable. With herself, her husband, and two of her three children disabled, high-quality insurance was a necessary part of her job decision.

For Cokley, the financial cost of being disabled comes from navigating a world designed for able or normative bodies. “[Little people] pay twice as much for a wardrobe because you’re having to pay for alterations. If the airline breaks your wheelchair or loses your cushion, you will likely need to offset that cost on your own while you fight to get reimbursed, or you aren’t able to go to work.” What seem to be insignificant costs add up for disabled people, which can affect not only their wallets but their careers as well.

Ajani AJ Murray
Ajani AJ Murray

Where many consider their disability a hindrance to their employment, Ajani AJ Murray gets hired because of his. As an actor, freelance consultant, and public speaker, the work has been sporadic but has given him multiple opportunities, including guest appearances on ABC’s Speechless and Comedy Central’s Drunk History.

While represented by a talent agent, he finds networking instrumental in his ability to land jobs, though he admits that it hasn’t been enough to reach financial independence. “Being disabled is expensive! I have never worked in these past five years a consistent twelve months or consecutive years. My income affects my SSI, which I still rely on,” Murray relays. For disabled people who rely on Social Security Income, having a monthly income higher than $1,180 means a loss of necessary funds ($750 per month). It gives an entirely new meaning to the phrase “living paycheck to paycheck.”

Murray needs a personal aide, but financial constraints mean he doesn’t have the money to cover the cost of paying an assistant. Wherever possible, he makes travel, accommodations, and accessibility a part of his contract, but he admits he is still waiting for the day when he can have more financial freedom.

“What people should know and what I had to learn myself is the hidden extra cost of living with a disability is an enormous stress that cripples our community and our families’ lives more than the initial diagnosis,” says Murray, echoing a sentiment expressed by many disability rights advocates. While a diagnosis is difficult to live with, unexpected expenses and an inaccessible society compound the issues associated with disability.

While the road for Murray has been difficult and has often felt like an “impossible dream,” he has been well received. “When I finally got a wheel in the door, I was received quite well . . . I’ve been received with open arms and many people I work with have been very receptive and sensitive to what I bring to the table.”

Alice Wong

Alice Wong

Alice Wong used to have a “regular” job as a university-staff research associate but wanted more flexibility and left to devote herself to activism and media making. She currently works as a freelance research consultant. Alongside her numerous speaking engagements, this comprises a majority of her income, but it is far from consistent. Because of Medicaid rules, Wong is stuck in a poverty trap. “I worry constantly about the total amount I will earn annually because I must report this every year in order to remain eligible on Medicaid in my state.” She frequently checks her bank account with this in mind.

A majority of the people she works with know Wong is disabled, and for those who do not, she makes it known. Wong works from home and uses email and videoconferencing to get things done. Preserving her wellness is a priority, so she often passes on assignments that strain her stamina. This means that gigs can be irregular and few and far between.

For her, the cost of living with a disability is more than financial. “It’s sweating about or forgoing jobs, opportunities, events, and options that most nondisabled people don’t even have to worry about.” Wong goes on to say that there will always be complex reasons why some disabled people cannot seek employment and society should accept that. She also hopes that the American healthcare system becomes more flexible to allow disabled people to work without the risk of losing services.

In an ideal world, Wong wants people’s values to not be tied to outmoded ideas on productivity that always portray disabled people and those who use safety net programs to survive as “lazy” or “unmotivated.” She looks forward to a more understanding and inclusive future. “I’d like to live in a society that allows us to reach our fullest potential, and accepts us as we are, employed or not.”

Looking Forward
For many disabled people, finding a job can seem like an impossible feat, and once a job is found, the financial-juggling game starts. As disabled people are often reliant on social programs for healthcare and income, we must make enough to cover the surprise costs we often incur for accessibility while at the same time not make too much money so that we are booted from those programs. Additionally, it also doesn’t help that healthcare is tied to employment at all. It means that rather than seeing disabled people according to their résumés, we’re seen as higher healthcare costs to the company overall. Ironically, it is these very institutions designed to usher us into financial independence that trap us in poverty.

Rebecca Cokley

There is hope, though. With social media, pushes toward diversity in all aspects of American life, and talk of healthcare for all, disabled people are more visible and using their voices to bring life to their lived experiences. Society overall is becoming more familiar with the ways in which disability intersects with poverty, and organizations focused on disability are protesting for more financial freedom. But disabled people cannot fight alone. If you want to become involved:

Follow the work of disabled-led rights organizations like National ADAPT and the Disability Visibility Project, and become familiar with the topics disabled people are talking about.

If you’re thinking of starting your own business, become familiar with accessibility and what is required of you as an owner. Recognize that it’s not nice, it’s the law. If you’re an employee concerned about inclusivity, consider being an ally to your disabled coworkers. Always approach the situation with the knowledge they can say no, but should they accept, it can be a huge relief for them. Listen to their needs and help wherever possible, but don’t act on their behalf without their knowledge or permission.

Gregg Beratan

Pay attention to your local elections and vote. Disabled people intersect with every single demographic, and we experience bias starting at childhood, so even a school board election can trickle into a disabled person’s ability to get work later in life.

Nondisabled people need to be willing to listen to the community and hold elected officials accountable for protecting disability rights. In this regard, it’s time for nondisabled people to get to work.

This article originally appeared in Good Company’s print issue #3. Read more from “The Money Issue”–available now!

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Comments

  • Thank you so much for this article. I am disabled too, and feel great stress over the pressure to push past my disabilities in order to perform well at work. It’s exhausting to give it 110% and still feel like I’m a less valuable employee and barely cutting it. Thank you for shedding some light onto this, and for making me feel a little less alone.

  • As an abled bodied person, those with a disability have always been my inspiration. One of my closest friends is paralized from the waist down. He is hard working, kind-hearted and extremely intelligent with a degree in finance and law (he received high distinctions for 80% of his university course units). He sent out 300 job applications before an employer looked past the disability and saw his talent and ability (this was 25 years ago). I wish that our media focused on showcasing the amazing abilities and talents that those with a disability possess. There is a beautiful video on YouTube called “Yes we can. We are the superhumans. Paralympics Rio 2016”. This video showcases the amazing sporting talent of those with a disability. I encourage those who do not suffer from a disability to watch, be inspired and give those with a disability the opportunity to showcase their talent and abilities.

    • The primary way that disabled people “suffer from their disabilities” are due to the attitudes and bigotry of non-disabled folks – in a similar way as folks suffering from blackness or suffering from gayness.

      • I agree Natalie. I feel, however, that the primary problem is with those individuals that hold key positions of governance in the public and private sectors of world economies – government officials, CEOs, boards of directors etc. The discrimination comes from the top down and as a result the disabled are not seen as a normal part of a community but abnormal and your everyday citizen forms incorrect perceptions/attitudes. How can the disabled be seen as a normal part of our society when they are purposefully hidden. For example, would it not be wonderful for able-bodied athletes and disabled athletes to enter a stadium and compete together in their respective events at the Olympic Games and that TV networks, Foxtel etc gave courage to the disabled events. Instead there are two games and little or no coverage is given to the Paralympic games. Why? Would it not be wonderful, for example, for sporting manufacturers to have a disabled sports person as the face of their products in addition to or, for once, instead of an able-bodied person. Instead what do we get – able-bodied sporting individuals. Would it not be wonderful, for example, that morning shows, news and current affair programs had someone with a disability as a presenter. The sad fact is that a situation/problem cannot be changed/remedied if it isn’t seen by the community.

      • Natalia + Sel:

        I just want to make a quick note here that what people are “suffering” from is, in this reference, ableism, racism and homophobia. I can only speak as a queer person here, but I find that wording really problematic. There is nothing wrong with being disabled, being black, or being gay, as an identity factor. So the suffering is from the bigotry, not the identity, as Natalia mentioned.

        Grace

        • Hello Grace, I apologise if my comment came across as saying that there is something wrong with being disabled, or black, or gay. I sincerely do not think that. Yes, there are people that treat those with a disability unkindly. To say, however, that the disabled predominantly suffer from bigotry by those that are able-bodied is, I feel, unfair and harsh. What I am “hearing” in your comment is that you are inferring that able-bodied people are intolerant of the disabled. There is discrimination of the disabled but that discrimination is caused by many things – fear, lack of understanding, and incorrect attitudes/perceptions being the key ones and not intolerance/bigotry. Intolerance of the disabled implies that the majority of able-bodied people operate from a place of contempt of the disabled. I do not believe that the majority of people operate from a place of contempt but a lack of wisdom/knowledge. I do not know a great number of people with a physical disability, only two. One friend who is paralized from the waist down and another who suffers from albinism. My views have been formed based on my friendship with them. Grace, I have a different view than you and I hope that does not offend.

          • Hi Sel,

            There’s been a misunderstanding. I did not say or imply anywhere that all able-bodied people are intolerant of disabled people. But many are. And that type of bigotry is what is hurtful for people. And yes, I agree that a lot of bigotries are fueled by fear and ignorance, but that doesn’t change the effect of that behavior or belief.

            Grace

            • Words are powerful. And it sometimes takes distance and time to see the subtle meanings in our word choices. May we all read the words and understand the full meanings as we put them together.

  • Thank you for this story. It means a lot. I have spent the better part of the last decade working and trying to conceal my disabilities out of fear that I will be ‘discovered’ and will be penalized for not being honest about my body with my employers. I fear turning down tasks even though I know it will eat into my personal time (where I recover from long and exhausting days) but I am afraid that I will not be allowed to work in the same capacity if I am forward with my limitations.

    We have a long way to go still.

  • This is a story that needed to be told but is so often kept secret.

    I was diagnosed with an incurable, progressively disabling disease at 49. I couldn’t continue in my profession, it was just too strenuous and the hours way too long. So I found part-time work which I could do and was pretty good at. But the very day after open enrollment for insurance (I couldn’t lie about my condition, so declared my disease) I was laid-off.

    My doctor told me to apply for Disability. The thought had never even crossed my mind. I had always been self-sufficient and didn’t want to depend on the government for help. I was almost immediately approved, a rarity but told it was because of the severity of my condition. I cried, this was not the life I wanted. I loved my work and had never even wanted to retire but now I was forced to.

    I can relate to all of the challenges to the people in this story. I can’t work, if I do I’d lose my Disability and other benefits but in my condition I couldn’t work enough to cover my living expenses and medical bills.

    But needing to keep active, I have volunteered at several medical related organizations. They are the only ones who understand that there may be times I couldn’t make it to a meeting or be able to do physical activities, etc. And, hopefully, my input about what it’s like to navigate this world as someone with a disability is valuable to them.

    Thanks again for this story — and for all the stories about accessible design. Just because we have a disability doesn’t mean we can’t have a nice home.

  • Thank you. My sister gets SSI for her disability and is also trying to make an income but her job is part time. So every month she has to fill out forms to declare what she made and SSI decides how much she gets the next month but she basically makes practically less than if she didn’t try to work, not to mention how TERRIBLE the app to declare her income is!!! I tried to help several times and I was lost and frustrated. So she went to the SSI office for help (of course having to take time off work to do it) more than once but it didn’t really resolve the problem and she has to either keep going back or just mail her info in rather than using the “convenient” app. It’s constant frustration like that. It’s not even happening to me directly but I’m stressed second hand and I’m so disappointed in the system on her behalf. This is only one of a million examples.

  • To our readers who have reached out about pop-up ads covering the page, we are very sorry for the inconvenience and we are looking into why this is happening.

    Thanks so much for your patience,

    Kelli

  • Do you have any recommendations for getting your employer to become more disability friendly? For example, I work in a building that only has one elevator, and it’s inconsistent, so it’s a safety hazard for a person with disabilities in the event of a fire. I work for a many-layered organization that makes strides toward accessibility with new buildings, but has lacked initiative to update existing buildings with inclusive renovations like multiple elevators, ramps, and ADA-compliant wayfinding signage. Do any of you have stories of managing upward and building internal will to make changes that increase accessibility?

  • As an able bodied person who does not know many physically differently abled people I needed this article to open up my eyes to how hard life is on an every day level. As someone who hires people it’s important to keep this perspective and educate myself more about who needs help-and by no means does that mean ‘charity’ or a ‘hand out.’ Thank you for this!

  • We are people.We must educated all the other people that are not disabled. everyday we fight depression,fear,shame till we take it back. without God and my dad,I would of not walked again. I never knew what fear was until the accident. I am thankful everyday I can walk again, feed myself, breathe on my own. someday I will not be in pain. thank you for the article. I can’t wait to find your magazine and read article on Fear. I am thanking you and God for this great magazine.

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