Butting in with a view on employment
Considering the title of this column, From Where I Sit, I’m surprised more people have not written about butts. After all, for those of us wheeling around at a seated height — I live with type 2 spinal muscular atrophy (SMA) — other people’s butts are often what we see from where we sit.
Fortunately, my view of late has been upgraded, quite literally. Now, I find myself looking out the window of my fourth-floor office in downtown Indianapolis, ogling Lucas Oil Stadium and window washers swaying in the wind on the J.W. Marriott. Sometimes, I pry myself away, turning to focus on the legal memorandum or public-records request on my computer. But even when I am around colleagues, we are at eye-level, discussing a judicial review or subpoena around a conference table.
It has been almost two years that I’ve been practicing law, and I am grateful for every day of it. Employment brings a sense of purpose and has enhanced my self-worth and confidence dramatically.
Yes, income is nice, too. Because I have a paycheck, I am a valued customer at my favorite stores. Because I am a taxpayer with skin in the game, fellow citizens are more willing to listen to me when I propose policy changes. At parties, I no longer have to cringe and stammer through an answer when others introduce themselves and ask, “So what do you do?”
Yet, beyond economic value, I also believe that having a job has enhanced my intrinsic moral value as a human being. My web of interdependence has broadened. We are all familiar with asking for help; I regularly find myself asking colleagues for assistance moving files or identifying a statute. In the office, though, I have opportunities to return the favor. I’ve taught colleagues what to look for when reviewing a trust, given several seminars for clients and occasionally even provided tension-busting comic relief.
Thus, rather than a series of mundane tasks, I see my job as a chance to challenge myself. It’s an opportunity to socialize and be part of a team. It also provides the means to put my talents to use — for the benefit of others and myself.
For these reasons, I am disheartened to know that approximately only 20 percent of individuals with disabilities participate in the U.S. labor force, according to the Department of Labor. Disheartened, but not surprised, since I know several people who fall into the other 80 percent. And while many of them are actively pursuing careers in this still-recovering economy, more than a few can’t seem to look past their own “buts.”
Here are a few examples of common “but” excuses about employment and how to overcome them:
Emily, I would love to work. But I can’t — I’ll lose needed government-funded caregivers if I earn even a measly income.
That earning a livable wage will force workers with disabilities off Medicaid is a popular misconception, but many state plans offer a unique set of eligibility criteria for employees with disabilities. In Indiana, I participate in the M.E.D. Works program. As a beneficiary, I pay a monthly premium of less than $200 to continue receiving Medicaid services, including personal care assistance. My current salary is around $43,000, though there is room for me to earn significantly more and continue on the plan. While Indiana’s program may be considered generous by some standards, most states offer similar options.
I would get a job, but vocational rehabilitation (VR) hasn’t found one for me yet.
Even if VR comes through, no employer is going to be eager to hire an applicant that lacks eagerness and ambition. Be proactive! After graduating from law school, it took me nearly three years to find a job. I volunteered. I went to networking events. I accepted an unpaid internship. After witnessing my skills and dedication, my internship supervisor scrounged for money in the budget to offer me a job. I know that it can become a habit when you have a disability to sit back and let others do things for you, but hitting the pavement and marketing ourselves is one area where we can act without assistance.
It would be nice to have a career, but I’m so tired. It’s too much. I just can’t do it anymore.
Employment looks different for different people. Maybe a full-time position is too much or maybe working from home is a more suitable option. Regardless, there are many accommodations that can be granted to help stave off exhaustion. Assistive technology is an incredible tool I use on a daily basis. Without my stand-alone microphone, voice recognition software and trackpad, I would pass out before the clock hit 5 p.m. Explore alternatives. Chances are that having the opportunity to contribute will reignite that extinguished spark.
It’s great that you have a job, Emily. But you are not “Little Johnny” and don’t understand what his life entails. Please stop encouraging him to do things that he can’t.
Perhaps even more frustrating than friends who have accepted a lifestyle of watching YouTube all day and waiting for their SSI check are parents, teachers and other people of influence for whom such a lifestyle is the greatest aspiration they hold for children with disabilities. Although being called an inspiration makes many wheelchair users have to fight their gag reflex, I do hope I can inspire kids to have Lady Macbeth-sized ambitions — minus the tragedy, of course. It doesn’t matter if Little Johnny has a ventilator or multiple disabilities or a poverty-stricken family. Little Johnny still has talents to share.
So find your passion, get off your metaphorical butt, and leave your other buts behind!
Emily Munson is an attorney living with type 2 spinal muscular atrophy in Indianapolis.
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