Reality Chick

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

Should IVF Coverage Be Mandatory?

           A couple of Decembers ago, I got an email from Resolve, the national infertility organization — a plea for end-of-year, tax-deductable donations. “Imagine a world where fertility treatment didn’t exist …”  began the missive.

            It had been years since I looked to Resolve for aid in my finally defunct effort to have a family. The organization claims to serve a dual purpose: to prove information and support to those pursuing children, and reconciliation to those who wind up without. But the overwhelming number of communications and services, and the only lobbying activities – urging Congress to pass laws to make insurance coverage for fertility treatment mandatory — were geared towards the baby quest.

              So I deleted their emails after a quick skim. But having planted the idea of a world where fertility treatments didn’t exist, I couldn’t resist an honest answer: “I honestly wish they didn’t!” 

           This spurred an instant response, offering a plea for my “healing” – as if only a wrong-thinking person could even question the fertility system.   

            I hit the reply key, and then typed in: “The fertility industry makes those of us for whom the system didn’t work even more of an anomaly than we already are.”

            Within minutes, a Resolve staffer called. She stressed that Resolve was there to listen to people like me. 

            “Good. All I’m saying is — if infertility is defined as an illness, then that makes those of us without children sick and abnormal, right? I can’t reconcile to my situation if society can’t reconcile itself to me. Plus – I have a real illness – having infertility over the age of 35 isn’t an illness, it’s biology.”

            The staffer was dumbfounded.

            I continued, “I’ve worked hard for the little financial security I have, so I’m really cheap and risk-averse. I knew most IVF’s in my age group failed. If it were a stock, I wouldn’t have bought it. But because it was someone else’s financial risk – I gave it a shot. But I’d never have gambled on it with my own money. I’d never have got sucked into the emotional maelstrom. And if no fertility treatments existed at all, I’d have much more easily accepted my childless state. And so would the rest of the world.”

            A lengthy conversation ensued. I insisted on a precise definition of infertility. At 28 it’s an illness that should be cured when possible, and paid for by medical insurance. At 48, IVF is an artificial prolonging of the motherhood timeline. Was it fair to make other policyholders in the insurance risk pool subsidize that? The Resolve staffer was shocked.

            But this year, the once-taboo arguments I raised are coming out in the open.

            In July, Salon’s Broadsheet column backed the Family Building Act of 2009, which calls for insurance companies to provide IVF coverage. Fifteen states currently require it, and Resolve would like to make it a national mandate.

            The financial logic behind insurer-provided IVF is that those who can’t afford the more expensive and precise IVF procedure use the cheaper fertility drug clomid, which may cause the release of too many eggs, resulting dangerous multiple births that tax the health care system more in the long run.

            Of infertility, Broadsheet columnist Lynn Harris declared, “It appears that we can no longer afford to treat its treatment as a luxury.”  

            Some commenters disagreed, with the predictable advice: You can always adopt. Which prompted corrective replies from other readers who pointed out that adoption is often more expensive and risky than IVF.

Other responder’s put the argument in the context of the larger health care crisis:  “When society can afford insurance coverage to provide life-saving treatments for all the children already here who need them, then we can spend more money creating new children.”

http://www.salon.com/mwt/broadsheet/2009/06/24/ivf_coverage/

Consider Yourself Warned

          In Britain, authorities recommend giving a fertility test at 30, seeing it as an awareness tool. Fertility counseling should go hand in hand with other kinds of sex ed.

http://www.guardian.co.uk/lifeandstyle/2009/aug/09/fertility-mot-children-nhs

             A former chairman of the British Fertility Society said it was crucial to tackle a “widespread misapprehension” about the success rate of fertility treatments. The chances dip sharply with age: from 31% for women aged under 35, to below 5% among women over 41.

 Mommy Oldest

            This summer, the death of a Spanish woman who gave birth at 66, leaving a toddler orphaned (she was unmarried) spawned heated debate on the blogs over whether or not there should be a ceiling-age for fertility treatments.

            In Newsweek, African American writer Raina Kelly spoke out: “Sometimes for the sake of the children-to-be, we may have to put away our longings and grieve for the children we might have had rather than go to the ends of the earth to get them. We have to think about the children, not just the having them.”

http://www.newsweek.com/id/208022

Some feminist voices argue that the reproduction playing field should be leveled – that if men can become parents at sixty, then so should women. Personally, I wonder if this is something to envy – but I’d hate to see reproduction outlawed for one sex and not the other. 

The Motherlode on Stillbirth

In her New York Times Motherlode column, Lisa Belkin asked readers how to respond to a family who’s experienced stillbirth. Again, sparks fly in the comments section, with one commentator saying that words like “tragedy” should be reserved for mass events, like the Holocaust or Hurricane Katrina.

http://parenting.blogs.nytimes.com/2009/08/13/when-a-full-term-pregnancy-ends-tragically/

Which button do I push for a dead baby?

            Stillbirth is more common that Down’s Syndrome, SIDS and HIV – one in every 160 pregnancies. Few expectant parents are aware of this, and so come to it completely unprepared — in an increasingly impersonal medical environment with no protocol for addressing it.

            NPR’s Tell Me More recently ran a segment featuring two parents of stillbirths who are trying to do something about that.

http://www.npr.org/templates/player/mediaPlayer.html?action=1&t=1&islist=false&id=111063912&m=111063895

Guest Sherokee Isle, who suffered a stillbirth in 1981, is trying to make sure hospitals have on hand a copy of her book, Empty Arms: Coping After Miscarriage, Stillbirth and Infant Death.

            She and fellow guest Alan Goldenbach, who recently wrote of his wife’s stillbirth in The Washington Post  (http://www.washingtonpost.com/wp-dyn/content/article/2009/07/06/AR2009070602918.html) point out that parents-to-be aren’t told that when movement slows down near due date, it’s a danger sign. They are lobbying for more research to find out why stillbirths occur.

In June of 2008, then-Sen. Barack Obama introduced the Preventing Stillbirth and SUID Act of 2008, but it was unable to gain much traction. (”SUID” stands for “sudden unexpected infant death.”) Sen. Frank R. Lautenberg (D-N.J.) continues the effort, “We need to know more about stillbirths to help increase awareness and prevention,” Lautenberg said. “We are crafting legislation to improve data collection so we can better understand what’s causing stillbirths and help parents looking for answers.”

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.

Nadya Suleman has had extensive plastic surgery to resemble another famous mother, Angelina Jolie. While her octuplets have turned into a national freak show and blog snark-fest, it’s not hard for me to follow her logic.

In the third issue of Exhale I discuss “Octomom” as a natural product of a deregulated fertility industry,  and highlight a memoir by another mother whose judgement was questioned. 

Creation Fixation

             Today, you have to explain your decision not to utilize the new technology if you have even the vaguest desire to have children.  Why suffer the stigma of being different in an increasingly conformist society, where being married and childless is seen as more odd than being a never-married parent, a single mother of many?

            From a front-row seat, I saw how the sexual revolution impacted my parents’ generation, who came of age and married in the fifties. It hit like a hurricane, breaking apart marriages, spawning a generation of latchkey kids, sending women to conciousness-raising groups and out into the work-force. In the same way that the pill ushered in both the sexual revolution of the sixties and the feminist resurgence of the seventies, the fertility frenzy has impacted society of the nineties and aughts; the outside of the envelope is being pushed further and further out. The business world, education system, dating conventions and even family pecking order rely heavily on the idea that the fertility industry is a safety net.  When I started a new job at 35, I was warned, off the record, not to get pregnant the first year, then brightly advised: “That’s what we have our fertility benefit for.”

But it doesn’t work for everyone; it didn’t for me. In my recent interview on Belief.net, sparked by my last month’s Exhale column, I wonder if the answer isn’t advising young women to freeze their eggs, but rather, retuning society to make it easier economically for young women to start their families at more appropriate ages: http://blog.beliefnet.com/beyondblue/2009/01/christina-gombar-an-interview.html.

The Right to Reproduce?

            Nadya’s case raises the very uncomfortable issue of whether or not having as many children as she wants, by whatever means, is as much a feminist issue as abortion rights.   In the Guardian, Jennifer Block wonders if it’s not time to “take a close, hard look at our healthcare priorities. While we have the technology and expertise to keep a 1.5-pound premie (Suleman’s tiniest) alive outside the womb, standard American maternity care is resulting in poorer and poorer outcomes for the vast majority of mothers and babies.”

http://www.guardian.co.uk/commentisfree/cifamerica/2009/feb/10/nadya-suleman-octuplets-ethics

Birthing versus Parenting

            “Any fool can have a child.” Our new president’s words, not mine – said on the campaign trail, speaking to an African American audience. Properly raising children, President Obama says, is another issue entirely.  Perhaps for their own safety, it’s a blessing that Nadya Suleman’s children will be living in a fish bowl.

In a blog post titled, “They Shoot Horses, Don’t They?” author Karen de Balbian Verster discusses her dilemma after witnessing the abuse of one of her daughter’s playmates. She also sites an alcoholic woman who boasted of abusing her dog, but succeeded in adopting a Chinese infant.    

            De Balbian Verster asks: “I wonder why we as a society allow people who are unfit parents to become parents in the first place? It’s a slippery slope, I know, but shouldn’t there be some conditions in place before one has a child? Things like another parent, mental health, financial stability? It seems like too little, too late to worry about these things after the child has been starved in the basement, burned by cigarettes, or sexually abused. But since we can’t seem to ban assault rifles, I’m afraid licensing parents must remain a futuristic concept.

http://mysite.verizon.net/kdebv/2008.12.01_arch.html

An “Unfit Mother” Reflects

             Polio survivor Anne Finger was told she was unfit to give birth: it was dangerous, she was disabled, she was unmarried. Her 1990 book, Past Due, a Story of Disability, Pregnancy and Birth tells what happened when she defied standard advice.

        After suffering polio as a toddler, Finger grew up subject to one butchering operation after another in the vain attempt to bring life back to her atrophied leg muscles. Because of her horrendous experiences with the medical establishment, when she decided to become a mother, she eschewed traditional medicine and chose midwifery, despite the fact that she was an atypical, and potentially high risk obstretric patient.  The midwife miscalculated, the labor went on too long, and her son wound up inhaling his own fecal matter. Death, or a life sentence of severe disability was predicted by the angry medical establishment that she finally reverted to.

            Despite her son’s full recovery, Finger’s trauma – first under the knife of post-polio childhood surgeries, then a well-meaning midwife unequal to the task of her  complicated delivery, and finally, the shaming of the medical establishment – scarred he.: Her thoughts, during those terrible days when her son struggled for life:  “I do know that if he dies, I will think that technology is the monstrous, inhuman, a mad scientist’s creation; and if he lives, I will think it a miracle.”

          One could as easily apply these words to the current fertility industry frenzy: “I have the places where I draw my lines about what I would and would not do; and other people … people I respect, have different lives. But I’m aware too of how social pressure can work to keep people in line: how when a technology is available it becomes harder and harder not to utilize it. If you’re over 35 and pregnant, you have to explain your decision not to have amnio, justify yourself.”

Overfertility in the Age of The Feminine Mystique

        Richard Yate’s dark 1960 novel, Revolutionary Road, is now a gripping movie starring Kate Winslet. While the narrative is one of over-fertility rather than infertility, the story throws into dramatic relief how fragile and tenuousness is this largely taken-for-granted business of birth, for the child, for the mother. How destructive, yet somehow inescapable, the issue of maternal identity – for better or in this case, for worse.

Blogs and Bits

 http://www.moretolife.co.uk

       This British site for involuntarily childless includes U.S. news, coping strategies, and personal stories. A good resource for those who wind up without.

Is that it works.

Here are some remedies I’ve tried:

• Multi-dimensional Lifestyle Counseling
• Reiki Healing
• Infra-red sauna
• Brain Gym
• Acupuncture
• Chiropractor 
• Shamanistic Soul Retrieval
• Journey to Your Sexual Soul
• Cognitive Therapy
• Psychotherapy
• Yoga 
• Meditation
• Cranialsacral Therapy
• Massage
• Kinesiology
• Dream Analysis
• Graded Exercise
• Homeopathic Medicine
• Naturopath
• Pilates
• Psychoneurological Retraining
• The Landmark Seminar (aka, EST)
• Super Blue-Green Algae
• The Maker’s Diet.
•  Supplements: Greens, Fish oils, shitake mushrooms, NADH, Co-Q10, Goji juice, Chines herbs, Ancient Aryuvedic Medicine
• Elimination diets and nutrition regimes: Super Green, Macrobiotic, no red meat, carbs, gluten, dairy, the Anti-inflammatory Diet. 
• Pharmaceuticals: anti-depressants, sedatives, anti-virals, amphetamines.
• Programs: Dr. Jeffrey Teitlebaum’s From Fatigued to Fantastic, Dr. Bernie Seigel, anything by, at least a dozen books with a variation on the title, I Cured Myself of CFS and You Can, Too! The Highly Sensitive Person, by Dr. Elaine Aaron. Dr. Micheal Cheikin’s Nine-Step Pathway to Healing.

         What’s closest to a push-button cure? Traditional medicine, megavitamin and mineral IV drip with Dr. L in New York. Avoiding stressful people, situations. Engagement in productive and pleasurable activity. Moderate exercise. High protein diet. Warm weather, sunshine, laughter.  

      Or will you have to sleep eleven hours a night, meditate and self-monitor for an hour each morning, eat stir-fried broccoli three times a day, chant aloud affirmations at regular intervals in the relative imprivacy of your cube? Can you do it driving a truck, working in an emergency room, flying a helicopter, in a trading pit?

        “Well” to me means working at full speed.  Getting by on six or seven hours sleep a night, rather than  nine to eleven. 

        Earning a good living again — that’s my goal. And I’m calling all Snake Oil for help!

“Is Sarah Palin Exploiting Her Son’s Disability?”

A few nay-sayers in the bunch accused Blitch — who is quadraplegic — of exploiting her own situation. The writer deftly clarified her position in a response:

“Frankly, most Americans simply don’t understand how near-impossible it is for people with disabilities to stand on their own two feet (if you’ll pardon the expression). There is absolutely no reason for me, an educated, intelligent, capable young woman to be sitting at home taking disability (a whopping $600/month). I *want* to be working, paying taxes, contributing to society. I want my parents to be able to retire one day. And in pretty much every other developed nation, that’s completely reasonable. People need to know that the system their tax dollars are supporting is actually keeping people like myself *out* of the workforce, because there’s no middle ground, no guarantee of health insurance. In this country, either you have a disability and can’t work, or do work and are magically healed. People need to know these things, and they need to know that there is a candidate and party committed to making specific, necessary changes to fix the problem.”

 She lauds the Obama campaign for having a specific plan for people with disabilities; letter writers responded by reporting that Obama’s home-state, Illinois, has the worst policies for disabled children in the country.

Thanks to Becky for bringing this under-exploited  issue to media attention, both presidential candidates should be listening.  This young woman is a voice crying out in the wilderness, an amazing thinker and writer.  I wish Salon should pluck her from the electronic slushpile, give her a salary on their regular staff, and get her off of SSI.  She speaks for a largely voiceless population, and to a general population that would like to help the disabled become independent, but doesn’t know how.

http://open.salon.com/content.php?cid=16273

This Valentine’s Day I broke up with my hairdresser. Because I’m going to be a Hillary supporter. Or Obama, whoever the Democrats put up.

I love Obama, but if he’s elected, I’ll have to watch this young, good-looking man age in office. It wasn’t pretty with Bill. Hillary’s already 60. And she has piano legs, which I love. She’s a tank, Mme. Thatcher, but liberal. And like Thatcher, not “likeable.” W was likeable.

Two great candidates. So why will I vote for Hillary in the primary? Because she’s firm on universal health care. Obama says he’ll make health care affordable “for all those who want it.” Not good enough. I’m one of those people who fell off the face of the health care map when I came down with a permanent illness. Too sick to work full time, too strapped to buy good health care. I know middle class people will put their kids’ college education before their own health premiums.

I’ve worked, both full time and as a consultant, for insurance companies — investment/annuities, life and property insurance. Some were ethical, some were questionable.  A good friend worked for a medical insurer, and its practices were way off my the radar screen of waste and treachery.  Only a government reality check will clean up the medical insurers’ acts. Don’t think you can let them lead the process; it’ll be business as usual. If you haven’t already, Netflix Michael Moore’s Sicko.

What does this have to do with Joleen, my ex-hairdresser? She is conservative. She says, “I want to control my own money.” Meaning eliminate taxes, have an unregulated economy. I tell her I worked on Wall Street, and know a few regulations are needed. Deregulation caused the crash of ’87, the S&L crisis of the early 90s, Enron, today’s mortgage/hedge fund debacles. Deregulation is making a couple of guys at the top rich, hurting everyone else.

But you can’t tell that to someone who doesn’t read the paper.

Joleen hates Hillary. “No one asked for her!” She thinks Africans are genetically programmed for violence.   When I told her I was traveling to Russia, she was so repulsed her hands reflexively retracted from my hair.

I couldn’t stand her. I couldn’t stand her touching me. But I put up with her because she was cheap. A third the cost of my former NY salon. I told myself, I’m getting a taste of small-town life, I’m learning about America. Toxic overload is the price I must pay.

I knew I had to quit Joleen. But not at Christmas. She’d been wailing about one of her daughters needing a heart operation; insurance wouldn’t pay. I gave her a $100 tip. Despite the fact that she failed to see that the Democrats she so loathed wanted to fix the health care system, to help people like her.

The insurance eventually came through. She was back to gloating about her children. (I once thought I could have a two-way conversation with Joleen, but I can’t, I don’t have kids.)

I called the salon on her day off, said I must reschedule. I never did. I went to a place where it would have cost 150% more if I’d let them do everything Joleen did for free – deep condition and style, as well as cut and color. I left with wet hair. But the girl was nice. We talked Broadway plays. She didn’t talk about her kids, didn’t ask me if I had any. Nor did we talk politics. It felt wonderful.

Better to spend more, and preserve mental health. Like it’s better to spend the $4.40 for that Latte Grande. You might meet your next boss at Starbucks, or boyfriend. If Candace Bushnell had been frugal, do you think she’d have lived the high life that led her to her Mr. Big, a daily newspaper column and media mega-deals? My guess is she ran up a few credit card bills along the way.
Last fall I bought a nice handbag I didn’t need, and it was admired in the style-free zone where I live by a fabulous woman at my Y. Turns out she was one of those people with a house overlooking the ocean here, and one overlooking the Hudson in Manhattan. We hit it off. She lent me her fabulous apartment. My $25 bag saved me $1,000 in NY hotels during the holiday high season. Sometimes Suze Orman is just plain wrong.