Reality Chick

This week in Drinking Diaries.com, I write about the bar to end all bars that cured me of  night-clubbing forever — at least in Connecticut.

          Freshman year in college, when Saturday Night Fever came to the tiny, provincial Pennsylvania town of  my small, private, pseudo-elite college, my friends contemptuously declared that no one could possibly look and act like the people in that film. It had to be a gross exaggeration.

They were wrong.

Down the Post Road in Fairfield County, Connecticut, since the age of fourteen I’d frequented a number of “theme” bars that catered to a disco clientele: a place where every table had a telephone, another with tiger-patterned rugs on the walls, a different one that sponsored dance contests.   These discos were full of young men with driven-back hair, polyester shirts and flared designer jeans with contrasting threads and platform shoes; girls with “precision” blow-dry hair cuts, glittering green eye shadow, boob-baring Danskins, and heels hanging off their wooden Candies.  

 Bars came in and out of fashion for mysterious reasons. Good Times Café in Norwalk was located in the bottom half of the back of a strip mall far down the Post Road, at least forty minutes from my home town, but which inexplicably became an instant hit with people from New Haven to Brooklyn, mixing everyone from Bronx street kids to millionaires sons from Greenwich.   

It was expensive, with a two dollar cover and $1.25 bar drinks, and you always had to wait in line, sometimes for hours, to get in. When you did, it was a nightmare of flashing lights, over-made up girls and scary men – the aura of Weimar Berlin with the added trauma of disco music blaring from speakers, or bad metal from a live band.

            I only went because my friends wanted to go, I never actually met anyone I liked there, but I loved to dance. The few times I was persuaded to go out with one of the Tom, Jerry, or Elvises who accosted me, the dates were duds. Men who looked glamorous under the mirror ball turned out to be: policemen, factory workers, rich college boys from Darien who all wanted a real girlfriend.

            I preferred to dance. I was there a minimum of three nights a week, every week, during the summer of 1979, arriving to stand in line as early as 7 p.m., and generally staying until it shut its doors to the strains of  My Sharona at 3.

Good Times wound down sometime in the mid-1980s and its former space is now a fitness club, but it lives on in cumulative memory. Searching in vain for an historical Google image, I came upon  Facebook page titled, “I Partied My Single Life away at Good Times Café in Norwalk, CT.”:

Thursday, 25-cent drinks. Wednesday-male stripper night. Closed Goodtimes and then it was off to Portchester NY to continue. Does anyone remember the X-rated hypnotist?

          Ah, yes, I remember it well.

One commentor’s experience best reflects my own: I was there so much, my parents had my mail forwarded. I remember such great times, and probably forgot even better ones.

http://www.facebook.com/group.php?gid=47601104631&v=wall

                                                           www.drinkingdiaries.com/2010/07/19/

http://www.drinkingdiaries.com/2010/07/19/

This week I’m prominently quoted in the Society for Human Resource Management news magazine on the effectiveness – or not – of the Americans With Disabilities Act.

“Many of our fellow citizens with disabilities are unemployed … they want to work, and they can work,” said President George H.W. Bush when he signed the Americans with Disabilities Act (ADA) into law on July 26, 1990.

Nearly 20 years later, President Barack Obama said in a Sept. 30, 2009, National Disability Employment Awareness Month proclamation, “We must seek to provide opportunities for individuals with disabilities. Only then can Americans with disabilities achieve full participation in the workforce and reach the height of their ambition.”

Yet for some the dream of meaningful employment remains as elusive in 2010 as it was in 1990. And there is some evidence that the ADA might have made things worse.

“Analysts have noted a decline in the employment rate of people with disabilities in recent years, and some evaluations of the ADA indicate that, rather than increasing employment, the Act may have reduced employment for those with disabilities,” noted the November 2008 edition of the Monthly Labor Review published by the U.S. Bureau of Labor Statistics (BLS).

“Although the ADA was intended to increase employment opportunities for people with disabilities by prohibiting discrimination in the workplace and by requiring employers to accommodate the needs of workers with disabilities, economic theory is more ambiguous,” the BLS publication continued. “The major argument economists have made is that if employers perceive the costs of accommodation to be high, they will refrain from hiring workers with disabilities.”

As of June 2010 less than 22 percent of people with disabilities of working age are employed—compared to 70 percent of people without disabilities—according to BLS statistics.

Individual Experiences Vary

In the late 1980s, while working as a public relations director for a well-known Wall Street firm, Christina Gombar was diagnosed with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)—a condition characterized by incapacitating fatigue and problems with concentration and short-term memory.

“When I got sick I was given a choice of long-term disability or a severance package,” she told SHRM Online. “As I was young and didn’t think the illness would be permanent, I took a package, which I used as a springboard to a downscaled career. This was great for improving my health, but didn’t provide enough income or benefits.”

When Gombar was able to return to work full time she sought accommodations, such as the opportunity to work from home a couple of days a week, a “perk” that was resented by some of her peers: “people just didn’t return my e-mails or look at the work I sent in,” she said.

“No one seemed to ‘get it,’ ” Gombar said. “When people think ‘disabled,’ they think: blind or wheelchair, not rosy-cheeked and mobile. I looked healthy and I did stellar work so they couldn’t let go of the idea that I freelanced part time by choice, not necessity.”

Deborah Lewis, a warehouse manager at a big-box retailer, experienced a similar reaction when she was diagnosed with fibromyalgia, a chronic condition characterized by widespread muscle, ligament and tendon pain and fatigue. Though Lewis’ co-workers knew her to be a hard worker prior to her diagnosis, she said their attitudes changed after her physician placed restrictions on the type of work she could do as a result of “a condition they had never heard of and couldn’t see.”

“Some people actually told me I was putting on,” Lewis told SHRM Online. “I have been dealing with that attitude from a lot of people now for over 20 years. People won’t believe what they can’t see.”

Neither Gombar nor Lewis is employed today.

“Here is the issue for many disabled people: they may be well enough to work part time, but the ‘Catch 22’ is part-time work doesn’t come with the benefits they need, and people with chronic illnesses always have higher medical costs than the healthy,” Gombar explained. “A few private insurance companies allow disabled workers to earn something like 5 percent of their original salary on top of their disability pay. My policy forbids any earnings.”

“I was unable to find any kind of job for over four years,” Lewis said. “The little box on a lot of applications that asks if you have any limits or can you lift, bend, reach and so on, put me out of the race every time.” She now teaches art classes at her home-based studio.

Yet Gombar and Lewis want jobs.

“I would give anything in the world if I could work, but now it’s much more obvious that I am disabled,” Lewis said. “I can’t even get an application. No one wants to take a chance that something might happen to me and that I would sue them.”

“So many employers are missing out on well-educated people just because they don’t fit into their image of what an employee should look like, act like or sound like,” she added.

“I would love to go back to work … but no one wants to hire someone with a health/work history like mine,” Gombar said. “I would love to just freelance, but again—not enough income and no health benefits. I’m stuck.”

An Employer’s Experience

Susan Loynd, SPHR, director of human resources for Washington County Mental Health Services (WCMHS) in Montpelier, Vt., an agency that helps people with disabilities find employment, has first-hand experience employing people with disabilities. Many of WCMHS’s employees have cognitive impairments, developmental disabilities and mental disabilities and work as “client-staff” offering peer support and a positive role model for other clients.

“Our client-staff are some of our best employees because … they’ve been marginalized … they’ve been treated really badly,” Loynd said. “When we hire them they are so thrilled to be given an opportunity, to give back to their community, to be paying their way.”

“Employers need to see that people with mental disabilities are just like everyone else,” Loynd added. “People have these stereotypes about disability [but] until they work beside someone else they just don’t know.”

Loynd, a member of SHRM’s Workplace Diversity Special Expertise Panel, said the stigma surrounding mental illness is an ongoing barrier for some individuals. “People are fearful that someone is going to yell and scream and behave badly,” she told SHRM Online. Yet when crises occur in her community, Loynd said their clients are not usually the ones to blame. “It’s people who are not aware they are experiencing some sort of psychological issue,” she said. “Our clients have been in the system for many years so they know what triggers them and know what the resources are,” she explained, and are “usually in a better place to manage that kind of stress.”

Many Face Bias

Individuals with disabilities face the same biases today that they faced before the ADA was enacted, according to Mike Purkey, executive director of ICON Community Services, an employment service that specializes in placing people with disabilities. “We’ve come a long way baby, but we’re not there yet,” he told SHRM Online. 

The ADA was “a much needed piece of legislation,” Purkey said. “It made people a lot more aware of people with disabilities and the fact that they are in the workforce.” But he said that many employers lack understanding and hold preconceived notions about people with disabilities—whether they acknowledge them or not.

“I don’t think the employer wakes up in the morning and says ‘I am not going to hire people with disabilities because they are trouble,’” he said. “But [the ADA] scares businesses, who fear they will get sued.”

Kate Cullen, a human resource professional in the Washington, D.C., area, said ongoing education can help hiring managers overcome ignorance and risk-aversion, which she said are the biggest obstacles to the full employment and integration of people with disabilities into the life of an organization.

Competitive Advantage

Companies lauded for achieving high performance from large numbers of employees with cognitive disabilities—such as Walgreens and Cincinnati Children’s Hospital—started with a clear vision of what they wanted to achieve, and believed that even those with cognitive disabilities would be assets.

And, as SHRM has reported previously, they were right.

Such success stories can motivate other businesses to follow suit.

Nereida “Neddy” Perez, vice president for inclusion and diversity at National Grid, one of the world’s largest utility companies, said that in 2009 her company began making “a concentrated effort to establish strong external partnerships with professional associations interested in the advancement of people with disabilities.”

“We established two new employee resource groups (Veterans and Enabling),” Perez added, “to help increase awareness about career advancement opportunities within the company as well as help us identify areas where as a company we could eliminate obstacles/challenges.”

And the company anticipated the needs of applicants and employees with disabilities by completing a facilities audit and by developing a team approach to workplace accommodations “to ensure that we address all of the needs of the employee,” she explained.

But Perez, a member of SHRM’s Workplace Diversity Special Expertise Panel, said there was more her organization could do. “We will look for ways to connect our internship program to any organizations that provide interns who are disabled,” she told SHRM Online. The company plans to train managers on interviewing skills for working with people with disabilities as well.

Some Mostly Positive Experiences

Cynthia E. Kazalia, a placement specialist for New Directions Career Center, a Columbus, Ohio-based nonprofit organization that assists individuals in career transition, said her bone tumors might impact her range of motion and balance but they haven’t affected her career.

“Is it possible that I did not get a position over the course of my career due to the bone tumors?” she asked. “Sure. But an interviewer might have also turned me away because I laughed too loud or reminded them of their ex-wife.

“That said, I am not unenlightened about the existence of prejudice,” Kazalia told SHRM Online. “Once, on a summer job, an attorney told a joke that ended with, ‘That’s what happens when you hire the handicapped.’ A horrified look then crossed her face as she focused in on my presence. ‘Oh, Cindy,’ she said. ‘I’m so sorry.’ The apology left me baffled until it occurred to me that she considered me disabled.”

“John,” a mid-fifties senior engineer with a congenital birth defect of the spine, said he has had no difficulties gaining employment throughout his career because people with his degree were in demand and employers were willing to “look past” his disability, which requires him to use braces, crutches or a wheelchair to get around. He requested anonymity for this article because he said his employer, a major defense contractor, “thinks they are doing what is best for me and I don’t want feelings to be hurt.”

“With my latest job change my employer has probably gone out of their way more than any other to make physical plant changes to make my life easier,” he noted. “However at the same time, in some areas they don’t seem to listen to my true needs and as a result money and time is wasted changing things that don’t need to be changed while ignoring things that do. This all seems to fall under the category of ‘I think I know what’s best for you and you don’t,’ ” he added.

Though his experiences have been largely positive, he too has faced a few challenges.

“For the most part my input and work efforts appear to be respected and appreciated,” he said. “However there are those who, for whatever reason, appear to be very uncomfortable with and around me.”

And in some cases, he said, he is treated like “the poster child” for those in the facility with disabilities.  Therefore I end up with trying to deal with the often uncomfortable task of speaking for all those in our facility with a disability.”

The Legacy of the ADA

Loynd said the ADA was a good start. “I think there are a number of folks who, but for the ADA, may not have had an opportunity at all,” she said.

Paul Miller, program director of the Green Mountain Workforce supported employment program at WCMHS, said that the ADA helps “keep bigger companies honest” and helps to create a dialogue: “It’s like having the big guy on the block standing behind you while you’re asking the kid next door for your $5 back.”

Perez said the ADA has “helped to raise awareness of the challenges faced by people with disabilities and establish guidelines that help businesses better understand what is expected from them.” But she said more work is needed, and that HR professionals “need to take the lead in addressing and eliminating the unconscious biases that exist in our work environments that sometimes impede the hiring of people with disabilities.”

This means holding leaders accountable for recruiting people with disabilities, she said, as well as challenging leaders’ perspectives about people with disabilities “the moment that someone makes an inappropriate comment or exhibits a behavior that is not professional.

“As HR professionals we have a responsibility to ensure that we effectively leverage the talents and skills of all employees,” Perez added. “If we see and know that there are barriers in the workplace that prevent an employee from being successful then we have a responsibility to address the issue.”

“Given the anticipated labor shortages that are coming up, look to a nontraditional workforce,” Loynd said. “Don’t back yourself into a corner when you are looking to hire people.

“Instead of putting an ad in the paper and talking to the first three people that walk through the door, widen the net,” Loynd said. “I guarantee if any one of these HR professionals called [WCMHS] and said ‘I need a couple of employees’ [agency staff members] would fall out of their chairs. We have a backlog of people waiting to work.”

An Open Mind

“Half the battle is having an open mind. Realize that you have many folks working for you who have mental health challenges right now,” Loynd said. “I work with these folks every day—there is no difference between folks that have a mental disability and anyone else.” 

“While we should not let disability be a barrier to employment, we also need to be mindful that we don’t hire an applicant ‘because’ of their disability,” Miller noted. “Applicants are not their diagnosis.

“We need to remind all staff and community members to think outside of the disability,” Miller said. “Ideally, we should be treating everyone the same. Everyone is important, but not necessarily unique or special.”

When Purkey meets with business leaders he sometimes asks them what a person with a disability looks like, or to name a person with a disability. He then uses examples such as former Sen. Bob Dole—whose war wounds left him with limited use of only one hand—and Sen. John McCain—who cannot lift his arms above his shoulders—to illustrate that people with disabilities are everywhere and can hold positions of power.

“If we stop looking at disability as something scary, abhorrent, we can look at it as ability,” he said. “We all have things we do really well and things we don’t.”

 http://www.shrm.org/hrdisciplines/Diversity/Articles/Pages/HastheADAMadeaDifference.aspx

    http://www.exhalezine.com/magazine/?page_id=521

In 2002, the renowned author Ann Hood lost her five year old daughter Grace to a rapid, freak, strep infection.  A novel, The Knitting Circle (2004) and a memoir, Comfort: A Journey Through Grief ( 2008) stand as testaments to that loss, and are gifts to everyone who has or will suffer in kind.

 CG: Some people who have lost a child have found books helpful and cathartic. But to a great extent, words failed you immediately after Grace’s loss. Why do you think some people are helped by reading/writing of others experiences, and others not?

 AH: As a professional writer, writing was impossible because I could only view it with a writer’s eye. I think journaling or writing your own loss story can help healing if you are not constantly editing, reviewing and dissecting like a writer would. 

CG: What, if anything, has changed for you since publishing the Knitting Circle, then Comfort – finally addressing in words what was unspeakable.  Have you had a great response from those in similar situations? 

I’ve received literally thousands of emails expressing the very thing I hoped the books would accomplish:  validating the feelings of grief. You are not crazy. You are not alone. You are heartbroken.

 CG: You open the book with the comments you are forced to endure: people telling you what to do, how to respond to your tragedy.  But some bereaved parents judge those who kept their distance after hearing of a still birth. Others prefer to be left alone, like a wounded animal, fearing the force of their rage will make them incapable of monitoring a response. If there was one thing you could tell the world to do for a person who has lost a child, what is it, if anything? 

Don’t presume to know what we are feeling. When someone says ‘I can imagine how you feel,’ — it’s almost insulting, though not intended as such.  It is true that losing a child is one’s worst fear. And it is unimaginable. Better to listen to how we feel than to tell us how we must feel, or how you would feel.

 CG:  You’ve written of the intense joy you experience while holding your new adopted Chinese daughter, Annabelle, while concurrently, and equally intensely, still feeling the anguish of losing Grace.   

 AH: Every day I am struck by feelings of joy beside my grief. Even in small things: laughing with a friend, the satisfaction of completing a project, a beautiful day. Yet all of it is juxtaposed against losing Grace, against her absence. C.S. Lewis wrote about the death of his wife: her absence is like the sky. It covers everything. 

  Ann Hood’s new novel, The Red Thread, will be published by W.W. Norton in May.

http://www.annhood.us/

 From Comfort:

 ”I have been there. I am the one woman standing in the street on a Thanksgiving afternoon, screaming and pulling out my hair. That is my mother coming out the door, yelling my name. That is me, running from her, running down the beautiful street where houses wear plaques announcing how old and important they are. That is me making that sound which is both inhuman and guttural and the most human sound a persona can make: the sound of grief … That is me running, zigzagging, trying to escape what is inescapable: Grace is dead.”

Copyright 2008, Ann Hood, Comfort, A Journey Through Grief.

People with chronic health issues are often also chronically financially challenged. It’s no secret that a catastrophic health event is the number one reason for bankruptcy in the U.S. It’s not just the bills, it’s the lack of earnings.

          Many people with CI’s (that’s shorthand for chronic illnesses) can’t work as much as they’d like to, or at all. If they fall down the rabbit hole of the disability system, they find themselves in an underground maze of dead-end tunnels when they try to get back to work — if, and how much they can earn without losing their health coverage and/or disability income.

The system right now makes it very hard to get off disability once you’re on it, or to even try to work while  trying to get your health back. The Social Security Administration has a Ticket to Work Program designed to deal with this, and  which President Obama’s said he plans to expand. But the stance of  private insurance companies — which offer much more comprehensive coverage — towards people disabled by chronic illnesses, especially invisible, cyclical, and variable ones, is a terribly adversarial one.

           I’d like to change that. I’d like to find a job for every person disabled by a chronic illness, as much as they can work each day, week or month, even if it’s just an hour by telecommute.

            The problem with most of the general financial advice out there, from Suze Orman to Money magazine, is that it assumes a certain amount of existing wealth and savings, and a normal working life span. For people with CI’s, it’s often just not the case. We can’t bump up our retirement savings by maxing out our 401k if we don’t have one. We can’t contribute to an IRA if we’re trying to stay in our apartment and out of the homeless shelter. We can’t pay for $600 a month in uncovered medical expenses by cutting out that daily double latte – because we could never afford it in the first place.

I’d like to create a clearing house of information, remove the smoke and mirrors that make it so hard for us to move forward financially. For the Normal ones, I need to show why their chronically ill friends and family members, unless they are married to a very high earner or have a trust fund, are barred from taking part of the working world.

What I don’t want to do is provide a platform or ad space for anyone selling the particular services of any investment company or financial planning service.  I get confused and angry when I read a seemingly intelligent blog, and see bogus Cure-All, or Make a Million Dollars at Home, or Life Coach ads popping up.

I worked healthy for 15 years, sick for nine, and had to stop full-time work ten years ago. I soon found out that I knew more about working with a chronic illness, and managing financially, than any of the career coaches, books and services out there. I was a business writer with a specialty in personal financial planning. I was and remain shocked and dismayed at the bad advice well-referred therapists, life coaches and career coaches handed out to me. It was often financially dangerous, sometimes unethical and possibly illegal. Above all, it was useless.

While previously I’ve written some critical things about the financial world (see my website www.ChristinaGombar.com) I thank God for what I learned there every day. And being risk-averse by nature I latched on to some very sensible, conservative investment advice, and I offer it in a very general way without naming names. My foremost advice is: Ask Questions, Educate Yourself. 

My first major project at my last job was writing a personal financial planning guide for people coming out of school with big debts, who were also committed to low-paying idealistic professions.  I’d like to put together something similar for people with CI’s and their families, because there’s nothing out there for us right now.

 Here are some useful beginner informational links about working with chronic illness:

http://www.barackobama.com/pdf/DisabilityPlanFactSheet.pdf

Above, the disability reform plan Barack Obama campaigned on.

A few years ago Lisa Belkin wrote a piece in the New York Times showcasing the difficulties of working with chronic illness.

http://query.nytimes.com/gst/fullpage.html?res=9807E5DA1630F934A25751C1A9639C8B63

Jennifer Jaff is a lawyer with Chron’s disease who’s founded a nonprofit organization to help chronically ill people with work/disability issues.

http://www.advocacyforpatients.org/

 And More magazine’s May 2009 issue, “Ill in a Day’s Work” examined both sides of working with a chronic illness.

 http://www.more.com/2046/4359

 I’m looking for impartial, third-party legal and financial experts, who can help us create a database of information to share with the chronic illness community.  If you’ve got a “this will transform your life” Snake Oil type of life/health/financial solution, I’ve probably tried it already.   

So far, I’ve found no push-button solutions to either the health of financial challenges of living with a chronic illness. And if I do find that magical cure, I promise to share it immediately, rather than bury it in some pyramid scheme.

I’ve emailed Suze Orman and a number of other financial gurus, looking for advice for the CI community. The concept of being disabled before one has accumulated substantial savings isn’t even on their radar screen.  No investment advisor has a plan for someone with an empty bank account.

 Rosalind Joffe a career coach for women with chronic health issues,  last year published a book, Keep Working Girlfriend – Women, Work and Autoimmune Disease, co-written with Joan Freidlander.   In a recent blog tour, Joffe explained:  “When we wrote the book, we actually created a specific character that we kept in mind … She is in her mid 30s, a professional, a mother, living with autoimmune disease with mild and periodic disabilities and is very worried that she might not be able to work in the future. We saw that there were multiple forces that seem to discourage her from working. We wanted to create a book that would raise enough issues to encourage her to push through the hard times of working, raising a family and living with illness to counterbalance the opposition she faced.”

I’m looking to address the needs of not just thirty-something Moms with a fall-back husband income and insurance protection, but everyone, in all types of careers, and including men – because in my experience, they feel the impact of career-loss even more acutely than married women.

 Reality Check Needed:

The women (and men) I’ve met in the chronic illness community – in my doctor’s drip room, online, people who’ve called me responding to pieces I’ve written – worked until the bitter end, worked until they were taken away on stretchers, often fired without disability pay simply for being ill. When we strike up conversations hooked up to our IV’s, the first thing we talk about is – Do you still work? When did you stop working? How did it go? Many have a lawsuit pending, because their employer refused to accommodate their illness: they were essentially fired for being sick. After publishing an article, I got a phone call from a once-middle class woman, now homeless due to Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). She’d been socially and financially frozen out by most of her family. One brother was sympathetic, but his church-going wife opposed either letting her ill and homeless sister-in-law move in, or his supporting her in any way financially. He did manage to transfer the many Marriott points he’d earned through his extensive business travel to her, so she was intermittently able to stay in comfort, when she wasn’t scrambling for a bed in a shelter.

The Marriage Penalty

Chronic illness kills 80% of marriages in which they occur, so most women do not even have the option of being dependent on anyone.  When I travelled to Washington to ask Congress for more CFIDS research funds, my lobbying partner was a divorced woman holding an M.A. from the University of Chicago, who’d held high government offices and once ran her own business, who had been reduced, for a time, to living in her car. She now has a clean and safe trailer. Brain damage caused a speech delay, as with a stroke victim, and at 50 she walked laboriously with a cane.

Family Matters

Another woman, a former Boston lawyer, who left her job thinking she could freelance, got too sick to work at all, and having left of her own choice, was ineligible for disability pay. Eventually she moved back to her native New York to help take care of her aged mother, and stayed on in her apartment. “I wish I could set up a video camera so I could show how verbally abusive he is to me.” She stays because she cannot afford to live anywhere on her own, or to even share with a roommate. Many of her experimental medicines are uncovered by insurance, and she is so weak she can’t use public transport, and so takes cabs across town to see our doctor.

Another woman I know, a once well-earning professional with a Master’s degree, would like to move home with her mother in suburban New Jersey, but is unwelcome. If she doesn’t get the wrongful dismissal settlement she hopes for from her former employer, she will be forced to move to a group home for the mentally ill. She isn’t mentally ill, but like many people with Chronic Fatigue and Immune Dysfunction Syndrome, was written out for depression by the Social Security Administration. This is a common ploy, because it is easier to kick people with depression off the system.

This is the reality of chronic illness. The more I talk to people, the more I realize how fortunate I was, to have been well enough to establish a career before I got sick at age 30. To have realized early on that the variables of a chronic illness don’t mix well with the variables of running my own business, when I didn’t have a family or husband able to serve as banker and safety net. To have picked to work for a company which at least gave lip service to whole life needs. To have been lucky enough, at least at first, to have a boss who understood and tried to accommodate. To have disclosed the day I was hired. To have a company that didn’t give me too much trouble when I finally had to be taken out (more or less on a stretcher) – and who still contributes a small sum to a pension, pays for not only my, but my husband’s medical insurance – which was a Godsend, when he went several years without a steady job during the post- 9/11 recession. My disability package secured and paid for our mortgage and expenses for at least three years. Yesterday my husband got his historical Social Security Statement. His income for 2002? $5,000. From close to $100,000 in 1999. Through all this, my income was invaluable.

The Disability Trap

When I first got sick, it wasn’t hard to find lawyers and articles and books and lawyers to help me prove my disability and collect it.  But no one offered a strategy for getting off disability, and ever since I went on disability, I’ve wanted to get off. But considering my health, my whole life circumstances, my hellish experience working sick for a decade, both freelance and on-staff, and the punitive “work and lose” system currently in place, I don’t have a lot of choices.

This week, I face typical issues. What do we pay for? The $250 brakes my husband needs on his car for his 170 mile a day commute? The $300 bald tires that must be replaced because I already got a warning from a cop? The $1,000 I need to travel to New York where I’m trying to sell my novel – which I hope will get back in the earning world? The usual $1,000 I spend each month in uncovered health costs – my supplements, my $100+ trip to Dr. L in New York for my energy-restoring drip, the Goji juice that actually seems to give me energy, but costs $42 a bottle? My gluten-free food and the expense of eating healthfully and organically? The new miracle energy supplement so many people are raving about, but which costs $85 a month? And where do I find money for wedding and graduation presents?

The Poverty Cycle

Cort Johnson, web host and editor of this Phoenix Rising newsletter, camped in the dessert as a young man, so as to be independent and not impose on his family, making pocket money from fast food jobs. He thought he was doing the right thing, ingesting a mega-dose of protein and fish oils, surviving mainly on cheap canned sardines. He also got an overdose of mercury. I meet many, many people in the drip room who can’t afford to eat well enough to improve their health. They have gone into debt with experimental drugs uncovered by insurance, with modalities like acupuncture, to say nothing of the Snake Oil cures they sample out of desperation.

The Insecurity of Social Security

I hope I’ve made it clear by now that there’s a lot more to the issue than the willingness to work.  It’s true that you can make $710 above Social Security disability, but if your check is only for $500 a month – as it may be if you got sick in college and never established a work history – that’s not close to an independent life. I know many people who tried to do the right thing by trying to work their way off Social Security, but due to employer demands and bookkeeping glitches, sometimes earned slightly more than $710, at which time they  were immediately and completely dropped from the system, without health coverage or income, and had to pay lawyers to get it reinstated. One woman wound up evicted.

Entrepreneurial Dreams

It’s a wonderful idea to work from home. But I warn anyone starting a business to have a safety net – three years living expenses, because that’s how long it takes for a typical business to turn a profit.  Second to having a health crisis, starting your own business is the easiest way to go bankrupt in this country. You need capitalization — money – to start with, and that’s something chronically ill people are generally already depleted of, due to under- or non-earning, plus greater medical expenses than average. And I advise to never, ever use credit cards to fund your business, or for your own day to day expenses. If you have a spouse or family willing to be your banker, you’re in a different situation, but such people, I’ve found, are rare.

In one day, in Dr. L’s drip room, I met an attractive young woman, blond and thin, who said she was in town with her fiancé, a medical resident. She worked as much as she could, for her mother, who had a health food business. This young woman was well-situated for her very part-time career – but she’s a rare bird indeed in the chronic illness world. Another young woman I met the same day had returned to New York to live with her mother when she got too ill to work in Seattle. Her mother disbelieved that her CFIDS was a real illness, and threw her out. She was now “on the street” – living in homeless shelters, and turning tricks.

Tainted Income

One of the hardest things for people with chronic illnesses is conveying to their friends and families the financial spot we’re in. Our experience is often one of shame – one woman I know is berated by her father for being on “welfare” – and disbelief, rather than compassion.  God bless all with families that can be supportive emotionally and financially.

Unfortunately, say the word disability pay, and many people scoff. Here in Rhode Island, a former fire chief makes $150,000 in retroactive disability pay on top of his state pension. The system is frequently abused, mostly by public and union employees. Those of us of marginal means and real illnesses are tainted with that brush.

I would like to bring to public light the tactics insurance companies use to scare us into submission. These are issues that should be open to discussion and negotiation. We want to work. Employers and insurance companies don’t want to pay us for not working. The missing player here is an employer who’s willing to accommodate us.  

I’m in search of companies and employment agencies willing to risk hiring the chronically ill. I’ve heard of agencies that specializes in flex- and part-time work, geared towards parents. Will they, and companies apply that same flexibility to those with variable chronic illnesses?

From ADA to the DL

 Many companies talk a good game about working with people with disabilities. There are also a number of books out there, like Gayle Backstrom’s I’d Rather be Working: a Step-by-Step Guide to Financial Self-Support for People with Chronic Illness that ought to be consulted (but actually offered no answers for my own particular health/life dilemma) and Job Hunting for the So-Called Handicapped by Richard Nelson Bolles – who gave us What Color is Your Parachute? – and Dale Susan Brown.  The idea behind these books is laudable, but as one who worked ill for a decade and has been trying to get back into the working world for another, hard to put into practice for someone with multiple and unpredictable physical and cognitive malfunctions – a fact noted in the latter book. But by all means, read them along with Keep Working Girlfriend (if applicable) – they may well contain the answer to your own career/earnings problem.

 The Americans with Disabilities Act was designed to encourage  employers to accommodate people with static, or predictable disabilities – paralysis or sensory disabilities.  A new amendment to the law was designed to encourage employers to accommodate people with the kind of multiple, cyclical and unpredictable disabilities typical of autoimmune disorders.

 The details of the law can be viewed here: http://www.eeoc.gov/ada/amendments_notice.html

 Jennifer Jaff, the disability lawyer and activist who the founded Advocacy for Patients with Chronic Illness, Inc. (www.patientadvocacy.org) who herself suffers from Chron’s, is at the forefront of safeguarding such workers.   

If my own company had  been able to accommodate my illness, I never would have had to join their dole qeue. All they would have had to do was let me do what I’d done for them the previous eighteen months of freelancing, before being hired on staff: work part time in the office, and part time at home. Ironically, to get the health benefits I needed to keep my health optimum, I had to do something – show up at their set times – which was really not necessary for the performance of my writing job – but which ultimately caused my health to cave in.

The Disability Dilemma

            I’m looking to make this a visible cause, so I and other people don’t have to hear the snide comments we all hear every day of our lives about the fact that we don’t work for pay. And I want to do something even more challenging – I want to change private insurance laws, like the one that says that if I make any money at all, my income, medical coverage, pension and benefits will go away. Forever.  

A few years ago, I applied for a part-time university teaching job and was offered it. I wasn’t sure if I could handle the load of teaching two classes, especially as they were held early in the morning. No matter if I go to bed at seven p.m., I always feel horrible in the mornings due to adrenal malfunction.  But I was desperate to work, to be in the world. The problem was, this teaching, which I wanted to just try for a semester, only paid about a quarter of my disability pay, and came with no benefits or promise of job security. And it would end my company’s disability income forever.

After consulting with my lawyer ($400 an hour) I found I couldn’t do it. He’d had the exact situation with another person from my company who’d gone off on disability with Multiple Sclerosis. She was punished for just trying to see if she could work. He even told me that if I pulled the same trick, he might not even want to take my case, it was too much trouble, the big guns at my company were determined to get as many people off the roles as they could.

I asked the university department head if she would let me work without pay – perhaps my salary could be funneled into some sort of escrow account, available later if I can get off disability? I just wanted to work. No – things had to be done by the book.

Financial Snake Oil

Career coaches working with people trying to get off disability have recommended I actually give a false Social Security number – my husband’s — in order to collect money. They are not thinking things through – just getting seduced by their own Financial Snake Oil cure. But the above example shows how impossible it is to get an ethical, solid organization to do something even slightly questionable.

I wish it didn’t have to be so punitive. The nature of my and many other chronic illnesses is that they’re cyclical. I used to feel pretty well for months – even years at a time. Before I went back to full time work in 1995, I would have described myself as cured. I went on a bike trip in Nantucket the weekend before I started that job, and rode 30 miles a day. The house of cards came tumbling down a few weeks after I started work full time.

This is the kind of story that Suze Orman doesn’t cover, because she has no answers. This is the kind of story for which I want to find a happy ending. ~~~

Advance Excerpt from: Breathing Under Water, Living With and Lying About Chronic Fatigue Syndrome. Copyright 2009, Christina Gombar.

Above Right: Revelers on the Deck of the Ocean Mist in Matunuck, Rhode Island.

When I moved to Rhode Island six years ago, my old college roommate  introduced me to her friends: “This is Tina, don’t mind her, she’s Teatotal.” Because I limited myself to one glass of champagne, and only ever drank with food. But here, pregnant women openly drink. Scotch. In the morning. I know many high functioning, middle-aged, career-successful people who put in a couple of hours at their regular bar nightly, and return for Saturday and Sunday lunch to drink the afternoon away.
 
Because I’m not a heavy drinker, it’s made it harder than usual to segue from an urban-work culture of New York, where people are addicted to jobs, gourmet food and psychotherapy, to the resort area where booze serves all three functions: nutrition, occupation, and all-purpose soul-soother and stress-buster. A  steep recession reigns here in the Ocean State and Rhode Island has one of the highest unemployment rates in the country. But you’d never know this from looking at the three-deep crowd at the bars of the local restaurants. In a way it’s heartening to see middle-aged and elderly people enjoy themselves and socialize like teenagers.

Read more at the great new drinking site:  http://www.drinkingdiaries.com/

For the world to listen. The tide is finally turning against the unfettered fertility quest, with the sad public examples of Octo-Mom, and Jon and Kate’s marital nosedive. Finally, last month, in British Cosmo, Cameron Diaz said it: Maybe there’s just too much emphasis on having babies. Maybe if women weren’t under such constant pressure to reproduce — “shunned” was the word she used for the childless — it wouldn’t feel so terrible when it doesn’t happen.

In the British press the single, childless-for-now star has drawn more raves than rants:

The U.K.  Telegraph calls Cameron Diaz  ”the height of responsible citizenship” – for remaining childless. Hear hear!

http://www.telegraph.co.uk/news/newstopics/celebritynews/5524706/Cameron-Diaz-does-the-decent-thing.html

In this month’s Exhale, I praise the forthright star and give a rave review to Pamela Jeanne Tsigdinos’s new book, Silent Sorority: 

Summer Reading Roundup

 Some Fresh Food for Thought, plus some Old Chestnuts to bite into – try not to break any teeth!  

             In books, as well as in blogs, I often find our friends across the pond speak more realistically about fertility issues than we Americans, with our unfettered optimism. (Babies for everyone! IVF at 90!)

 Beyond Childlessness, Rachel Black, Louise Scull, Rodale Press, 2005

            I have read several books on unintended childlessness, none offered the depth of comfort and shared experience as this one. The authors are two women — one single, one married to a man who forbid a family without making his preferences clear before marriage — who sought out and interviewed other women in their situation, and let them tell their stories themselves.

            This book is head and shoulders above any other “fix the problem” or memoir anthologies on childlessness, because it ventures where others dare not go. Well-meaning books like the husband and wife-authored Sweet Grapes sugarcoat some of the ugly truths. 

 
            Other books on childlessness say “it’s no use going over whose fault it is.” Actually, there’s a lot of good in that. One of the authors, Rachel Black, has worked out with her husband that when she/they are faced with the ubiquitous and painful question, “Do you have children/why not?” She says “My husband didn’t want them.” Childless women are demonized and ostracized, and assumed to be selfish. It was his decision, let him take the responsibility socially. She also made him get a vasectomy, so he wouldn’t reproduce with someone else, should their marriage fall apart under this incredible strain, and move on to a younger woman.
                 This book also exposes what an arduous and punishing route adoption can be – especially in Britain. Adoptive parents must be rich, young and healthy — a hundred times more qualified than a natural parent. One interviewee commented on the British government’s stress on keeping adoptive children in touch with their biological families. “If they’re that keen to keep in touch, why are they not looking after the child themselves? This constant having to keep in touch, we couldn’t actually break free and be our own family, and have a proper, intimate family life, there were always going to be people looking over your shoulder, who you’re answerable to.” 

Silent No More            

If you haven’t ordered Exhaler Pamela Jeanne’s Tsigdinos’s Silent Sorority yet, here’s a teaser: 

“You should never, never ask a woman when/if she’s going to have kids. If she’s already been trying for a while, it will feel like a knife to the heart. It forces her to either tell you more than she wanted to or to lie. Because if she had wanted to talk about having kids in the first place, she would have.”

 “Telling a woman who has lost a baby that ‘it wasn’t meant to be’ is not compassionate. It’s merely a way of easing your own discomfort by dismissing ours. Minimizing our pain, be it offering ‘solutions’ or explanations only serves to make yourself feel better while inflicting further hurt on us … It’s hard to contemplate the randomness of the cruel universe, where bad things happen to good people, and it may make it easier for them to sleep if they can convince themselves that there is a reason for it, and we must’ve deserved it. Telling us you know what we’re going through because it took you X months to get pregnant minimizes our feelings. You had a happy ending. We may not.”

 “I’ve been stripped down and made new on this journey. I’ve become utterly vulnerable, and forced to see the world differently.  I’ll never have the kind of optimism that some people have that anything is possible, that it will all work out in the end.”

 “I have had to take responsibility for my life in a deeper way than I ever had before. And because we live in a society where so few seem to take true responsibility for themselves and for those around them, it is very lonely. We don’t live in a world that really embraces soul-searching, and so much of this journey has been about soul-searching for me. I think a lot of the bad and unsolicited advice and glib responses to infertility (like “just adopt” or “it wasn’t meant to be”) are because people are so uncomfortable with pain and the possibility of pain with no resolution. We can’t take away the pain. All we can do is transform the response to it.”

 Adapted from Silent Sorority: A (Barren) Woman Gets Busy, Angry, Lost, and Found, Copyright 2009, Pamela Mahoney Tsigdinos.  www.silentsorority.com.

Pamela Jeanne’s memoir is the first honest empty-handed one-person take since:

Why Don’t You Have Kids? Living a Full Life Without Parenthood,

By Lesley Lafayette

This book, published in 1994, is a bit dated — not in the essential common sense and truth of its pronouncements, but in that the boldness of the author’s opinions. They would be entirely unacceptable in today’s family-at-all-costs universe.

            I found it extremely reflective of my own experience, though it won’t be to everyone’s:

“Looking back, I can see now that my desperate desire to have a baby came not from some internal biological drive, nor was it the result of thoughtful introspection and practical planning. It was my response to a hysterical society, a culture that stripped me of my intrinsic worth and told me point-blank that to fail to reproduce was to fail.”

“…there was no opposing view, no voice of reason, no organization or group to provide a dialogue.”

            On giving up the baby quest: “I stopped beating myself up. You’ve heard the old joke about hitting yourself on the head with a hammer because it feels so good when you stop? It does.”

            Writes the author, “I know what it is to obsessively grieve and despair because I did not fit in to what society deemed as the norm, what my peers and the media and even my government saw as acceptable and ‘fulfilled.’ I know what it feels like to be alone, to be different, to be isolated, to be ignored.”

            She begs the mass media to: “Have some characters who don’t even want kids and enjoy a happy life nevertheless. Have someone opt for an abortion occasionally rather than turn wistful and blushing about her pregnancy as if she drank a cup of Instant Mommy, as if all the problems of the world will be solved when she has her baby.

            “The fact that more than a million abortions are performed each year in this country is a testament that not every pregnancy is a wanted one. Writers should be free to portray real life and not the sugar and spice that conservative advertisers force upon them … tell the truth.”

            She describes taking part in a T.V. talk show on women and childbearing where she was the only dissenting voice in a panel of “talking uteruses” – including a woman who, with grown children in their 30s, had an egg-donor baby at 52.

            “Each and every one of them … had one goal and one goal only in her life: to produce an infant as quickly as possible, spending whatever money she had and all of the time it might take – even going into debt and emotional quicksand if necessary.”

            Lafayette’s opinions would be unacceptable in today’s media environment. The trajectory of the book leads towards a directive to embrace a “Child Free” identity – to form groups and make friendships with others similarly situated. It’s a great idea, but my concern is that this further segregates the Child Free/Childless from mainstream society, when what is needed is mutual respect, interaction and consideration. 

            The Child Free Network she began but seems to have distanced herself from has a spotty web site that seems to have drifted from the author’s original worthy aims, degenerating into snarky commentary about “breeders.” There are articles complaining about other people’s “noisy, stinky” kids.  This is certainly disappointing. Still, the original book is an honest, interesting read to balance today’s fertility-centric media message.

                                                            ###

Therese Borchard's Beyond Blue

My interview in Therese Borchard’s blog, Beyond Blue, reached 3 million subscribers through Belief.net, and was picked up worldwide.  I argue that women without children wouldn’t feel so depressed if society were more accepting:

http://blog.beliefnet.com/beyondblue/2009/01/christina-gombar-an-interview.html#more

Cut Out of Each Other's Lives

 

 

Cut out of each other’s lives:  friendship was a casualty of illness, money problems, and divorce.

 A Short Story in Three Parts. Featured in Rita Watson’s nationally syndicated Relationships blog: www.ritawatson.com

Julie grew more angry and distressed at the strain of the mortgage, taxes, and unanticipated household repairs.

I dropped hints: “You could rent out your house and get a nice one bedroom and pocket the change,” I said. “You could refinance. You could use a roommate service and screen candidates.  You could place an ad.”

 Julie vetoed all suggestions.  She was not going to move, and she was not going to get someone in off the street. Candidates referred through friends proved unacceptable: “I don’t want someone else’s – stuff – all over my house,” she spat.        

Every time I talked to Julie things were worse. She descended into panicked thinking.  Instead of paying $75 to have someone look at her broken dryer, she hauled wet clothes to a Laundromat for months. Why didn’t she get her new boyfriend (a handyman) to look at the malfunctioning appliance?  She didn’t want to be “dependent.” My husband invited her to my 40th birthday luncheon. I should have told him not to, because it was held at a gaudy, overpriced restaurant, attended by prosperous people whose ostentatious materialism, I knew, she would loathe.

My best Wall Street-era girlfriend boasted of having just bought two mink coats. Noting the acid downward curve of Julie’s mouth, I thought, I ought to have told her not to come.  She hated these people, and she was starting to hate me, with my marital compromises, stay-at-home life, my new blond highlights.  About six months after Julie sent Dave away, she began to talk about her neighbor’s husband. “Don’t waste your time,” I told her, “flirting with married men.” This wasn’t what I expected when I handed her a check to help speed up her divorce.

More than half a year passed without a dollar repaid. My husband and I had money stresses of our own by then, and I had to come out and ask for my loan back. Julie had just spent a weekend with millionaire friends.  As I’d been talking about our own unexpectedly huge tax bill, I assumed she’d got the hint and arranged her visit to relieve me. I was wrong.  Julie was livid.

“Look,” I said in my defense. “You’ve had a boyfriend for six months. Why can’t you ask him for a loan, or to move in and help with the bills?”

Julie hung up on me, furious.  Within a month, I got a check for the full amount of my loan in the mail. We had no contact for a year. I finally called and learned that her handyman boyfriend was long gone, and her ex-neighbor’s husband was living with her, and that he, too was divorcing.

Sounding upbeat, but hardened, Julie dismissed my good wishes for her new relationship; she had no interest in marrying this man. He paid his share and did things around the house. His ex was awful, took the kids back to Maine.  She would make use of him till the expiration date ran out.

Hanging up, I thought back to Julie’s wedding — the white dress, the lilies, the dark cathedral, the hopeful, holy words, the peacock bursting into full plume. I thought of the dance performance the night she announced her divorce.

I suppose I often see myself in marriage, indeed, in any relationship, as the Minotaur – stumbling along, half an awkward hybrid body, struggling to reconcile the ugly with the sublime. I easily forgave Julie her bad temper and outbursts at the time of her divorce, but could not forgive the home wrecking, nor could she forgive my judging her dark side.

Naively, I’d thought our friendship would outlast our marriages; I thought it would flourish forever. But like the peacock’s fan, its glory was short-lived. I thought of her declaration: “All relationships have expiration dates.”

Ours, apparently, had run out.  ~~~