THINK YOU CAN'T WORK?
Here are six people with neuromuscular diseases who thought they could — and do
by Tara Wood
It's an alarming statistic: 75 percent of people with disabilities in this country are unemployed.
On the brighter side, of those, 72 percent want to be employed.
So what's the problem?
Quest readers answered a poll posing the same question in August 1999 ("Hardly Working," vol. 6, no. 4). The top reason given for not working was "fear of losing disability income" (Supplemental Security Income or Social Security Disability Insurance). In second place were "fear of losing health benefits" (Medicare or Medicaid) and "my disability is too severe."
But thanks to some key legislation, and a growing number of enlightened attitudes and easy adaptations in the workplace, fears like these may soon be alleviated.
The Ticket to Work and Work Incentives Improvement Act, which went into effect Oct. 1, allows many people with disabilities to retain or start receiving Medicare health coverage (and sometimes Medicaid) even if they take paying jobs and give up disability income provided through the Social Security Administration.
This legislation, coupled with a decade-old Americans with Disabilities Act (ADA) that mandates workplace accommodations and equal access to public facilities and transportation, means more incentives exist than ever before for people with disabilities to ease comfortably into the work force.
The bottom line: The time is ripe for job hunters with disabilities.
But even before such safety nets were passed into law, many people with neuromuscular diseases found and fought their way into the workplace. These trailblazers entered the work force for a variety of reasons, and have found success and challenges at many levels.
Some common denominators in their success include support from family and friends, determination and sometimes a little luck. They've conquered and continued to deal with obstacles that range from transportation to toileting, and have worked hard to earn respect in their professions.
Read about six people served by MDA who have careers, the varied obstacles they've overcome to get there, and their advice and perspectives on what it means to go to work each week.
Continuing a Family Tradition of Hard Work
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| Julie Kelly helps design and administer company retirement plans. |
A tradition of a strong family work ethic and some good opportunities after college have led to a solid career for Julie Kelly of Woburn, Mass. She's a consultant for Pentad, a subsidiary of Walker Alliance Inc., where she designs and administers retirement plans for private companies.
Kelly, 38, got her business degree at Northeastern University, and she gained work experience through a school co-op program that placed her at IBM in the employee benefits department.
Her job means keeping current with tax code information, "so it can be pretty boring stuff," Kelly joked, but there are many highlights.
"I like working with different people all day, meaning our clients. I'm introduced to new people and new ideas every day," Kelly said, adding that she also enjoys some flexibility in her schedule, a great benefit when she's feeling fatigued.
She received a diagnosis of facioscapulohumeral muscular dystrophy at age 18. She's ambulatory but walks with difficulty, and has some trouble reachin g.
Kelly, who is one of 11 children, has encountered a handful of obstacles throughout her career, mostly relating to mobility.
When she went for an initial job interview, she discovered that her prospective employer was on the third floor of a building without an elevator. Kelly struggled up the stairs and worried she would blow the interview after becoming flustered from climbing the stairs.
All went well, however, and she was offered the job. She had to tell the interviewer she couldn't take the job because of the building.
Remarkably, the company convinced the landlord to install an elevator, and after some construction delays, she went to work.
"That set the pace for me and the group of people I'd be working with. It's just been a wonderful experience," Kelly said.
Kelly faced other problems when her company twice relocated. In one building, "handicapped parking" was located far from the front door, and there was some red tape about installing a grab bar in a bathroom.
Each time, she's diplomatically worked through the situations, with her employer backing her all the way.
Kelly has also worked out an arrangement for clients to come to her when there's bad winter weather so she doesn't have to venture out of the office.
At times she struggles because requesting accommodations has meant setting herself apart from what appears "normal."
"I think if you're honest and open about what your needs are, you'll find that people respond really well and favorably," she said.
Overall, working means independence, Kelly said, and it has even allowed her to build her own house. Her home, which she shares with her brother Michael, who is also affected by FSH dystrophy, was designed by Michael to be completely accessible.
"You lose a lot of independence having muscular dystrophy — at least I feel that way — in certain areas of life. With my job, I am totally independent," Kelly said. "Being in the work force gives you a good sense of accomplishment and self-satisfaction about what you do and what you contribute."
Helping Others, and Herself, Start Over
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| Lorraine Middeton began a new carrer at age 43 as a rehabilitation counselor. |
Lorraine Middleton of Washington, D.C., had owned and operated a successful gardening business for more than a decade when her life was rudely interrupted by a diagnosis of Charcot-Marie-Tooth disease at age 43.
"I didn't know I had CMT, but I had symptoms you could explain away," said Middleton, 52, who thought she had arthritis or a slipped disc in her back.
These health problems were the beginning of a personal crisis that saw her business crumble, and forced her to start over in order to support herself and refocus her life.
"If other parts of your life are not together, the disability can become the unhinging factor, and that's exactly what happened. Every part of my life collapsed," said Middleton.
She fought her way back through several part-time jobs, graduate school and finally into a solid position as a rehabilitation counselor for the commonwealth of Virginia.
There she helps individuals who are in positions similar to the one in which she found herself a few years ago.
"I coordinate services for a caseload that can range from 60 to 110 at one time. We do everything that we can, that we're in control of, to help the person identify their goals and whatever services they need," Middleton said. Her clients include people with disabilities of all kinds, and people who are educated and have fallen on hard times and have to start over again.
Middleton often shares wisdom that she learned from her own experience, and she obviously has a unique empathy for her clients. "It took me an awfully long time to understand my disability, and to understand how to get services for myself," she said.
Along with learning computer skills from scratch, Middleton eventually found a grant program to fund her education at George Washington University to become a rehabilitation counselor — a $45,000 value.
"It was crazy, but it did fall together because I had a plan. That's the key to trying to deal with a disability: to come up with a plan so that you can counter that feeling of panic which just paralyzes you," Middleton said.
Middleton advises others looking to start over or begin a career to apply to the Department of Vocational Rehabilitation in their states. Then, identify your strengths and weaknesses, she said, noting that a strength is anything you love to do.
"I've had plenty of times where I've fallen into 'poor me,'" she said, and she "leaned on everybody" for all kinds of support. Now she can happily marvel at the irony of her success.
"I get the biggest kick out of people calling me and saying that they've got a job and it's a good one and they like it. It's just such a thrill!"
Making an Impact in His Community and Environment
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| Joseph Mikitish's work in environmental law can take him to mines and other outdoor sites |
Joseph Mikitish wants to make a difference in his community. Judging by his resume, which is packed with achievements, awards, volunteering and activism, he's well on his way.
He's an attorney for a Phoenix private practice where he does environmental litigation. Prior positions include a four-year stint with the Arizona attorney general's office, four years with another Phoenix law firm and a clerkship with a judge on the Arizona Supreme Court.
Mikitish, 34, especially enjoys environmental and resources law because it's evolving and has a visible impact on his community, he said.
Beyond his job, Mikitish is involved with professional and community organizations, groups that work on disability issues, as well as his church. He ran unsuccessfully for the Arizona Legislature last fall, and he advocated passing a return-to-work program for people with disabilities in his state.
He was a student regent on the Arizona Board of Regents when he attended the University of Arizona in the late 1980s and early 1990s, and graduated from the school magna cum laude.
"I think there are a lot of ways that we can be involved and have an impact on the people around us, and also have an opportunity for personal growth," he said.
For Mikitish, who has spinal muscular atrophy and is able to walk with the assistance of leg braces, obstacles during his time in the work force have been relatively few.
"I've been very pleasantly surprised in my short career so far that people have been fairly open-minded in the sense of, 'Can Joe help us accomplish our mission?'" he said.
Mikitish said that, because he has limited use of his hands, added work challenges have included managing his time so as to get work done in a timely manner. One bolster to this effort came in the early 1990s when he began to use a voice recognition system with a computer, rather than do his work by hand and have someone type it for him.
"That, I think, helped me improve my efficiency and allowed me a little more opportunity to take a step back and look at the big picture because I was able to get things done in a more efficient manner," he said.
He encourages anyone who's considering entering the work world to "take some time to do an honest self-assessment and gauge their own strengths and weaknesses and really find something they like to do."
Mikitish is motivated to succeed and stay involved in his community because he's had great opportunities, received key support and wants to give back.
"I've had tremendous support from the time I was a kid through MDA and through my church and through my family. The opportunity to give back to the community is something I hope I can achieve over the course of my life," Mikitish said.
Working His Way Up to a Better Life
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| Tim Ragsdale collects and crunches numbers for the Arkansas Department of Human Services. |
Tim Ragsdale describes himself as a "career bureaucrat" because he's worked his way up through various positions with the state of Arkansas.
Currently a statistician for the Arkansas Department of Human Services, he's responsible for collecting data from the department's employees to help determine what proportion of time workers are spending on different programs.
"I've just kind of worked where opportunities arose. I had my first little foot in the door and looked for opportunities to advance along the way," said Ragsdale, who has Becker muscular dystrophy and uses a power wheelchair.
But earning a living and punching the clock weren't always the routine for Ragsdale, 37, who started working in 1988.
"Before I started work, I was on SSI because of my disability," he said. "I thought that was where I would be for the rest of my life."
Ragsdale attended several years of college but didn't graduate, something he considers a failure that often weighs heavily on him. Then he became more discouraged by watching his two older brothers, who are also affected by Becker MD: One struggled to work and eventually gave up, and the other didn't attempt to work.
Fortunately, a rehabilitation program helped him regain the focus he needed to get back on a career track.
"I just resolved that I was going to make good decisions in pursuit of working. My logic was, I'm going to try and go through the motions. If it works out, great and wonderful. But if not, at least I tried," Ragsdale said.
After that, he said, a job practically fell into his lap, "but really I had done the groundwork so it would."
His job today has many highlights, said Ragsdale.
"What I enjoy about this position is that I've been given responsibility for this data, it is my responsibility that it get collected, and I'm accountable for it," he said.
He plans to keep working toward advancement, including someday finishing college, keeping in mind that his neuromuscular disease can progress.
"I've got to keep moving up to get into positions where I am relying less on my physical ability," said Ragsdale, who drives himself to his job in a wheelchair-accessible van.
Ragsdale said he's had to keep a careful eye on his income throughout his work history: first to make enough money to afford to work, and now to make sure he maintains eligibility for state Medicaid assistance with health and personal care.
Along the way he's lost several government benefits that made a financial safety net for him, such as subsidized housing. But Ragsdale said he wouldn't trade the financial convenience for the satisfaction and emotional boost he gets from working.
"It means so much to me to have responsibility and to put myself in a position that I can dream and hope for a better future. I know that I don't have to settle for what I have today," he said. "If I keep working, I can have so much more in my life."
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