Crohn’s and the job hunt

This economy is not great for job hunting, and that’s a fact for pretty much everyone. But for people with disabilities, it’s even more daunting to find a suitable job. There are several issues at play. David Onley, Ontario’s Lieutenant Governor, put it this way last year (2011):

I think, right now, today, in Ontario and in Canada, the crisis of unemployment for people with disabilities is specifically because of a mismatch of manager’s and employer’s attitudes. Their attitudes are not based on fact. They’re based on bias, and I would even say, to a certain extent, there has to be a certain percentage that is based on a kind of bigotry towards people with disabilities. Now those are harsh terms, but I think they’re valid because I just know far too many highly qualified people who are educated, are talented, they’ve completed their post-secondary education, gone on to do graduate degrees and then just hit a brick wall when it comes to employment. . . . the myths include the belief that absenteeism rates will be higher, that job retention rate will be lower, that Workman’s Compensation claims will be higher, that the cost of adapting the workplace [will be prohibitive. . . .] (Carolyn Pletsch’s interview with David Onley, Ontario’s Lieutenant Governor, in Disability Studies Quarterly, Vol 32, No 3 (2012)).

The Honourable David Onley here was speaking in particular about people with visible disabilities who don’t land jobs because of how they look during interviews — he himself has experienced being looked down upon because he uses a wheelchair —  but similar situations hold also for invisible disabilities such as Crohn’s. The barriers to suitable employment in the case of Crohn’s, though, are not as much of an issue during interviews, because people with Crohn’s generally look “normal.” Instead, the main barriers arise 1. during the process of choosing an appropriate workplace before even applying for a job, and 2. in disclosing having Crohn’s in order to secure workplace accommodations, when those very accommodations play into employers’ concerns about “absenteeism” (in the form of reduced hours and/or the flexibility to deal with unanticipated absences). I’ll discuss these issues in reverse order here, also detouring through a critique of the increasingly popular notion that disabilities are assets in the workplace.

Dissed on disclosure

People with disabilities are well aware of the general bias that the Honourable David Onley mentioned above. Crohn’s sufferers and other people with invisible disabilities don’t just face the stereotypical idea that people with health issues also have performance issues, but we sometimes also get accused of manipulation when we look well but ask for accommodations in order to stay well. I have personally experienced some clear cases of bias in the past that demonstrate these kinds of misunderstandings, for instance: an HR representative once told me I was looking for special treatment that would be unfair to other workers when I asked if I could book a room and lie down if I felt sick; I had to go on sick leave before HR would look at my doctor’s letter outlining the accommodations I needed; and I was told by a superior at one workplace to go on disability when I asked for an altered schedule when the schedule I was on at the time was exhausting me. (I told that individual that I knew my performance was not an issue (they agreed) and that we should stick to discussing the schedule (they also agreed to this). What a stupid thing to say — essentially, “if you’re so sick, go waste your talents and live off my tax dollars rather than contribute to this company, where I agree that your performance has been excellent.” If that’s not bias, I don’t know what is).

These biases sometimes mean that obtaining accommodations in the workplace can take a long time. HR professionals will say not to take a job when the “fit” isn’t right, and a lack of willingness to accommodate a disability disclosed during the job acceptance discussion is a pretty obvious indication of poor fit. But beggars in this economy can’t really be choosers, and some of us, myself included, have been in the position of taking work at a company that’s a less-than-ideal match because we need financial security. What this meant for me was taking it on the chin until I could demonstrate the need for accommodation beyond a shadow of a doubt.

The fear factor

During the times when I was working without adequate accommodations, my work environment, and, as a result, performance, were not as good as they could have been. I felt that I was arguing from a position of weakness because I had not been given the opportunity to shine. Instead, I was being worn down by long hours for the sake of long hours, and my productivity suffered. Every time I talked to HR about accommodation, I got treated like a whiner, not a top performer. So even in cases where putting accommodations in place would reap large benefits for both me and for the company — less stress and better performance — getting up the courage to disclose a disability or ask/press for accommodation can be intimidating and stressful.

Once I got the right accommodations, I was reluctant to change workplaces, even when other things weren’t going well; the thought of going through that entire process another time was enough to turn my stomach. Now that my job is finding a job, I have to confront this fear of a long, drawn-out and potentially personally insulting struggle to get accommodations again. I’m certainly not the only one to feel this way. The Honourable David Onley again spoke for many of us when he explained that the fear of losing a hard-won job, and hard-won accommodations (no matter how incomplete), end up making disabled people extra-valuable employees to the companies that actually hire us: “Fear is a legitimate factor. . . .The person will work harder, will work longer, and will be a more dedicated employee, because they don’t know when the next opportunity is going to come along or if it’s going to come along. That’s the reality that we have to deal with.” He backed up his point by citing various American and Canadian studies that show both the loyalty of disabled employees, and the increased productivity of companies that hire disabled employees. (Disability Studies Quarterly, Vol 32, No 3 (2012); The road to inclusion: integrating people with disabilities into the workplace. White paper summary of Deloitte’s ‘dialogue on diversity’ roundtables (2010), especially pp. 4, 7 and 13).

Are disabilities assets in the workplace? (They are certainly NOT assets in the job hunt)

This brings us to the “disabilities as assets” argument. I’ve seen this assertion in various places, ranging from academic papers (Tone Alm Andreassen, Disability as an Asset? Reflections on employment patterns in the health and social care sector, Disability Studies Quarterly, 2012, Vol. 32, No. 3) to the New York Times (Peggy Klaus, Disabilities can be workplace assets, NY Times, Feb. 4, 2012). Let’s not sugar-coat things: disabilities are not assets — they’re disabilities! It’s the coping skills, the time management skills, organization, creativity, resourcefulness, calmness in the face of stupid insults (see above) and other mechanisms that disabled people hone over a lifetime of struggles to live a decent life that are the assets. The tricky thing is to find a way to highlight these useful skills without drawing undue attention to the scary and unfamiliar world of disability when applying for jobs. This is a particularly difficult proposition for people with invisible disabilities: it involves emphasizing these skills early in the interview process, before the job offer is made, but without using examples that would inadvertently disclose the illness and spook the interviewer into withholding the offer.

Andreassen’s article discusses how the percentage of workers in the health and social care sector in Norway is higher than in other work sectors, suggesting that a) people get injured on the job in those sectors but stay employed, b) there is lots of part-time work in those sectors, and c) disabled people are able to obtain work through sharing their experiences with the health care system as teachers and peer educators. The injury part doesn’t apply to Crohn’s, so let’s ignore it. Part-time work can also be very helpful for many people, though in this study it was not clear how many part-time workers started out as full-timers and dropped to part-time status after an injury. It’s the third point that gets me: few people with invisible disabilities want to live the role of “disease ambassador” that’s been thrust upon them. I, for one, do not want to have my condition run my work life — it already runs enough of my personal life! (Contrary to what this blog may suggest, I have many interests beyond my disease and how it affects me, and in an ideal world, I would be able to spend much more of my time and energy on those things).

Even for people with invisible disabilities who do want to work in the growing field of health care, it is difficult to include personal experience, such as a deep understanding of how the delivery of care in a given system works, on a resume, in a cover letter, or in an interview. Doing that would disclose health problems before a potential employer is ready to commit. There is a disconnect between the value that people experienced with the system through illness can bring to employers in the health care industry and their ability to bring it to  employers’ attention in a positive way.

Invisible disabilities also fall through the cracks of Peggy Klaus’s article. In it, she discusses how job applicants with visible disabilities (e.g. blindness, mobility impairments) can leverage interviewers’ discomfort with their obvious restrictions by describing the skills they developed in learning to cope and thrive. She suggests that confronting potential preconceptions head-on is a good strategy to gain an edge in interviews:

To start with a line like, “You may be wondering how I could manage to travel as part of the job,” means that job applicants can elaborate on how they manage the rigors of travel, given their limitations. In addition to talking about their work and academic experience, they can offer up “brag nuggets” and stories — talking about the preparations they needed for a trip to Europe, for example, or to make an 8 a.m. class. (Disabilities can be workplace assets, NY Times, Feb. 4, 2012).

But invisible disabilities, by being invisible, also make these assets invisible to hiring managers. Sad to say, but having an employee with a visible disability around visibly demonstrates inclusiveness and diversity more than having someone with an invisible disability on staff, especially if the person with the invisible disability discloses only to his or her hiring manager and HR. I have not found studies on this, but I suspect that this situation makes companies less likely to hire people with invisible disabilities who disclose too early in the interview process; interviewers would then think about the hassles of accommodation and not at all about the perks of demonstrating diversity. It’s just too easy to say “you’re just not a good fit” when what is really meant is “I bet that accommodating you would be a lot of extra work for me.” How can people with invisible disabilities, who have both the limitations and coping skills, but no opening to discuss either kind of thing before a job offer is on the table, find a way to use their hard-earned “assets” in the job hunt? If you have any ideas, let me know. For now, what I do is I apply only to jobs where I think the following accommodations are already going to be in place:

My job-hunting criteria

These criteria are in addition to the regular job-hunting criteria that other people also share, like salary, qualifications, and workplace culture fit. I’ve highlighted the “assets” that go with some of these restrictions in purple. See? I am a thoughtful and organized employee — I just can’t tell you about how I live these values when I have an interview.

  • Flexible hours, flexible hours, flexible hours!
    • Ability to go to appointments
      • Even when I’m well, I have regular (and irregular) Crohn’s-related checkups with several specialists, as well as Remicade appointments. There are a lot of these, and more when I’m ill. Specialist appointments and Remicade dates also cannot be skipped or moved. I also have annual checkups, dentist appointments, and fridges that die spontaneously and need to be replaced during business hours, like everyone else.
        • I arrange my Remicade appointments to miss a minimum of work days.
          • I go to the clinic on Thursday afternoons so that I suffer from the withdrawal effects of my pre-meds over the weekend and am able to work again by Monday morning. 
        • When possible, I try to cluster appointments so that I miss the minimum number of work hours.
          • I’ll schedule two appointments on the same morning, or on the day after Remicade, when I’m off work recovering anyway.
    • Sick days/sick hours
      • I am the best judge of my own ability to concentrate on work. When I cannot not give my all, I can get back to work sooner and stay well for longer if I rest and recharge (rather than burn out). Conversely, I take every opportunity to work when I am afforded a few decent hours.
        • At my old position, I negotiated the ability to take off sick hours rather than entire sick days at a time. I would also take unpaid hours off when I ran out of sick hours. With sick hours (instead of days), the company I worked for did not pay for time when I was feeling too ill to be productive, and I in turn maximized productive time at work. There were some weeks when I was quite ill and worked only 1 to 3 hours per day, but those hours added up to a day or two of work on those weeks. If I had to take sick days instead of sick hours, the company would have lost that work time.
    • Ability to work from home on occasion
      • As I see it, there’s no point coming to work and being useless there, burning myself out and making myself sicker, or reducing my coworkers’ productivity by infecting them with whatever bug of the month I catch.
        • I liked the routine and energy boost of being around my colleagues at my last workplace. But on days when I was sick — or when sick people were coming to work — I was able to work from home (on a company laptop) as many hours as I felt well enough to work per day.
          • Once I worked from home for 2 weeks straight in order to meet a deadline while a flulike outbreak was spreading through the office. I was successful in completing the work in time and not getting sick, though I missed the dynamism of the office. After the project was completed, I came back to the office, promptly caught that bug, and was sick for 2 weeks — proving that I had been right to avoid the office in order to meet the deadline.
    • No more than 35 hours per week
      • I can work longer hours over a short period of time, but doing so consistently wears me out and I get ill.
    • No shift work or late hours
      • At my last job, I had to come in at 7 am for months at a time, but I’m a morning person, so I was fine with that. Switching shifts all over the place would wear me out, though, especially since I have to take certain medications on a consistent schedule.
  • Reasonable commute by public transit
    • I have a valid driver’s license but driving with nasty gut pain or while very fatigued is dangerous. I also have only limited energy/hours of alertness per day. I need to save some energy for my home life. A commute more than an hour long would erode my ability to care for myself, even if I spend that time reading on the subway.
  • Job does not require driving on a regular basis — same reasons as above
  • Any travel must be infrequent and the dates must be flexible
    • I can’t move my Remicade appointments.
    • I almost always pick up a cold when travelling through airports, so I like to build downtime into my schedule after I return (to recover).
  • Benefits ideally would either cover 100% of my medication costs or allow me to opt out of drug coverage and keep the optical, dental, and hospital coverage

Job hunting assistance is available. . .

In addition to regular job hunting activities, I have been checking out job hunting resources for people with disabilities since I graduated in 2007. The number of associations in the GTA that have a mandate of helping disabled people find work seems to have declined since 2007/2008. Some organizations that used to have specific staff members to recruit disabled applicants also seem to have eliminated those positions. On the plus side, the federal government is starting a panel on labour market opportunities for persons with disabilities in September. I will be participating, and other Canadians are also welcome to participate.

. . . it’s just not great for educated people with disabilities

My experience with agencies designed to help disabled people find work has not been very helpful — most of these agencies focus on people with mobility or sensory issues (blindness, deafness, mobility issues, etc.) rather than “invisible” disabilities, such as immunological problems like Crohn’s, and most also focus on entry-level jobs for people with little education. Though many people with disabilities fall into those categories, many also do not; I have several friends with “invisible” conditions other than Crohn’s who also have masters’ degrees, and their experience of complete mismatches between the jobs on offer and both their abilities and disabilities have been similar to mine. (And all of us are currently either unemployed or ridiculously underemployed). Because they’re entry level, most of the jobs that come up through these disability agencies require contact with many people, inflexible hours, or perfect attendance — the exact aspects of jobs I need to avoid because being immune-suppressed makes me likely to get ill more frequently than people with healthy immune systems. Add to this mix a number of counsellors who have little experience with job counselling, period, and the most I got out of it was a bunch of extra eyes scanning the ads and sending me irrelevant information. (One counsellor, after I explained my tendency to catch every virus around and subsequent preference for non-client-facing positions, kept sending me job ads for frontline positions at the airport, aka virus central). Don’t get me wrong — there are a lot of dedicated and smart job counsellors out there, and these agencies provide helpful services for many people. I just haven’t found the right helpers for myself yet.

So I’m on my own for now. . . unless you can help! (Email me if you are interested in discussing any of these issues — sick of Crohn’s (all one word, no apostrophe) at gmail dot com).

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