Gays & disabilities have one thing in common - corporations pretend they don't exist. So what do you do when you're disabled and gay? Perhaps Stonewall can teach us a lesson here too: that ignorance, irrelevance, and invisibility cost dearly - and add financial insult to medical injury.

As with gay rights, the first solution is taking back the power - in this case, the power to determine if an illness or accident are disabling. Who has the power now for lack of activism? Doctors, therapists, benefit managers, social workers, family & friends, government bureaucrats, and insurers. Today, that decision can be yours.

This is especially true with the new AIDS drugs. Disability benefits can be a recovery room for better health - not a waiting room for death. Good as the drugs are, their ballpark statistics don't give aisle & seat numbers; they risk being used to wrongfully deny claims - and to push people back to work too soon. At no time has disability planning been more crucial to keeping the power to run one's own life.

No one I've helped has regretted taking these steps; most have asked "why did I wait so long?" While it's a doctor's job to nurture hope, in finances the best rule is: plan for the worst and hope for the best.

If illness is impacting your work, it's time to learn about alternative ways of getting an income. Don't let an incident or infection make the decision for you. The myth is that disability befalls us; the reality is that with today's illnesses like HIV we can take preventive and pre-emptive action much earlier than has been the practice in the past. Illness can be something we live with - and work around.

Today's 110% jobs can aggravate disabling conditions. Technology like the internet has only made work faster and careers more temporary. The 90s are not a great time to be sick. Today's clients and companies like to pretend people don't get sick. In sanitized corporate cultures, disabilities don't exist - except perhaps as exceptional decoration attesting to corporate high values.

Today's clients and companies like to pretend people don't get sick. In sanitized corporate cultures, disabilities don't exist - except perhaps as decoration attesting to corporate good taste and values. Today's times are measured in 90 day years. Being out of work often means being out of a job - and perhaps without a career.

If downsizing is in the offing or a job search too demanding, the better part of valor may be locking in disability benefits now. A lot more may be at risk than a job: the funds and time to fight illness without corporate stress.

What's needed for illness is time; what's needed for careers is continuity. Disability benefits supply both. Do you have medical insurance? Very likely. So let's not pretend that illness - disabling illness - doesn't happen.

People do pretend. We all know friends who are living along the banks of "DeNial." But without disability benefits the sick get moved inland away from life-giving funds - into the desert of poverty, away from life.

Disability benefits make all the difference between plunging into another socioeconomic class - learning how to live on welfare - and simply taking time out to get better with the least disruption to life. Is there really a choice?

Personal Problems

The big barriers to accessing this line of defense may be inside us. "I can't get insurance" can ignore creative ways for doing just that. These internal demons are very real. For many of us, being gay or being disabled still means laboring under guilt, shame, and anger turned inward. This closeting of illness and gayness can prevent prevention, can stifle early detection, can delay pre-emptive financial and medical measures, can make health problems more complex than they have to be and can generate financial fallout more lethal than necessary.

Illness is a time to reassess. For many gays this is a wakeup call. Learn the lessons hard-won from the experience of our brothers with AIDS and our sisters with breast cancer. Human beings do get sick from time to time - often disablingly sick - with cancer, heart disease, organ disfunction, accidents. It's time to act up with acknowledgment, knowledge, and action.

We need to neuter notions about disability. Pure and simple, it's mostly a financial issue - not just a moral or psychological dilemma or drama. For example, being disabled and being gay can be a double-coming out.

Let's take the politics out of practical decisions. On the one hand, the Americans with Disabilities Act only protects people after they've informed their employer. Silence can = death here too. But on the other hand, coming out in a company with rampant discrimination that's too small to fall under the rules of the ADA or FMLA can be suicidal.

If we need a slogan, here's one: fighting disease costs money; jobs can kill; and, employee benefits can save lives.

Personnel Problems

Only 40% of medium and large-sized companies offer long-term disability (LTD) benefits. In corporate America many people who are ill tend to leave a job on unemployment; corporate leaders get virtually no feedback about what it's like to live on 60% of previous salary. Yet modern illnesses in increasingly costly medical systems often require 40% more salary - not less. Another example of poor benefits is that most companies pay the premiums; yet that makes disability income taxable. If you have disability benefits, check the paystub; if you've been paying any part of the premium that part of your benefit is non-taxable. If they're tax-free, these benefits can approach your present take-home pay.

Need information? Remember that benefit people are low on the totem pole and are often undertrained - so get their opinions in writing. Booklets are often missing. Carriers change. Master contracts are in remote offices and cannot be copied. Finding out coverage questions can be like playing battleship: you have to know the right questions in a world that doesn't volunteer answers. You may need a corporate benefits consultant, group insurance agent, or financial advisor experienced in insurance (few are).

Worse, you'll find companies are still family-oriented in their antiquated benefit systems. For example, disability benefits are often "coordinated" with pension benefits (i.e., the pension benefit is deducted). Yet the pension benefit dies with you - can can only be continued for a legally married spouse. Group life insurance often can only be assigned as a gift to family members. Currently, Prudential is refusing to allow assignment to viatical companies who would buy group life insurance policies. That effectively bars the sale.

Corporate activism pays

Because gays are often on the fringe, because of our uniqueness, it sometimes seems that our purpose in life is to test the system. We're that proverbial canary in the mine. Well, there's plenty of dangerous gas in corporate benefits.

The first thing to change is to convince management to provide group disability benefits. They're stunningly cheap. (Remember? No one gets sick in corporate climates.) I've had them installed in flamingly three-person design outfits. With small groups it's customary to have a year's pre-existing condition wait - but that's why planning's important.

The second change is to make those benefits tax-free by having them deducted from after-tax income. Because group plans change yearly with renewals, this change can take effect fast - so get expert benefits counsel.

The third change is to urge management to spring for a cafeteria approach to benefits. This approach enables employees to trade benefit dollars for programs that benefit them individually. This is the only practical way to avoid gays having to pay for 2.5 person family benefits they gain little real benefit from.

The fourth change is to lobby for changes in life insurance.

• First, carriers should offer an accelerated death benefit for 100% of the coverage. (They'll suggest 50% or even 25% in a paternalistic vein.) Put in a 12 month life expectancy requirement because this is far easier to satisfy than the 6-month rule they'll suggest. Ask that the insurer structure this benefit as a lien - or find one that will (half of them do); this makes it tax-free. Then people can tap life insurance benefits if advanced illness strikes as a genuine alternative to viatical settlement.

• Second, make the coverage assignable for value - not just as a gift. That'll enable people to get cash out of life insurance to promote life, not just make death comfortable. This enable people to use the funds to fight illness and do the things they always wanted to do - but that illness cut short.

Private insurance pitfalls

If you're thinking of getting private disability coverage, think again. Beware if you've been tested through the national testing labs or have medical records. Beware of insurers who, since the early 90s, have been adding an escape clause "except for fraudulent misstatements" into their incontestability clauses - making them contestible indeed. And beware of commission-hungry agents all too willing to sell you a policy; they know you'll be screened out when you try to make a claim, not when you apply. Check out the key words used in pre-existing condition clauses. In the meantime you'll have based your plans on the false assumption that you have valid coverage.

You can get some specialized disability income insurance. There are hospital indemnity payment plans that pay $100 or so a day if you're hospitalized - after a year's pre-existing condition has been met. You can put credit disability insurance on your credit cards but again it's got to be in force six months to a year to eliminate pre-existing conditions. And getting your doctor to fill in those forms every month can be a practical barrier to making your claim.

With life insurance applications, if you're tempted to lie be aware that many viatical settlement companies are now getting legal opinions as to whether a death claim might be successfully disputed by an insurer. This may be true in over half the states whose incontestability clause protections are overridden by state statutes on fraud. It's little fun being a test case.

Debt Problems

The bottom line is that most people on disability face a shortfall between reduced income and increased expenses. One thing to realize about disability that comes in handy here is that conceptually disability is a change in societal status. Plain English: things just aren't the same any more.

That often means taking advantage of regulations that permit the forgiveness of federally financed student loans. It can mean in many states having disability income exempt from creditor claims. In New York it means creditors not being able to force viatication or acceleration of death benefits. In real life it often means that simply writing letters to creditors, informing them of this new status and that income is now fixed disability income, often causes creditors to simply drop their claims. Yet how many people have I met whose last act before going onto disability was to try to finally pay off all those bills that had been haunting them so many years!

A corporate solution

The best way to get the medical, life and disability benefits you need is through new employment. With employers these benefits are often effective immediately - or soon thereafter.

• Once qualified, if you must leave that work because of disabling symptoms medical benefits can usually be continued through COBRA rules.
  
• The life insurance benefit might be continued without premium on a disability waiver of premium - or at least can be converted to individual coverage.
  
• Increasingly, group disability coverage might even be convertible into an individual policy - all without medical screening.

Now's the time to have the tail wag the dog: benefits first, salary second, satisfaction third, vacation fourth, etc. But job hop carefully, making sure promises can be kept. Watch waiting periods on specific benefits. Nail down when new benefits are actually in effect.

In the 90s beware of employers who offer jobs on a free-lance or consultant basis only - without benefits. Unfortunately this is happening in precisely the high-tech areas where benefits have been best. Like a corporate virgin, hold out for the job.

This may be the time to consider moving from an hourly to a salaried status, from the ranks to supervision or management, even if it means loss of overtime - if the benefits are better. Explore options that enable you to buy back years of credit towards disability plans.

Beware of leaving a job for unemployment benefits. This may give you only a minimal 18 month COBRA continuation of your medical insurance - leaving you without coverage when you may need it the most.

If you do just leave, don't forget to convert your life insurance to an individual policy before the 30 day deadline. It may be more expensive but may turn out to be your only legal source of life insurance which you can later tap into to cover your expenses or underwrite your dreams. In fact, new jobs for people who have a serious illness carry a "signing bonus" equal to the life insurance they can now convert from their old job.

If you stay with a job:

• Increase your life insurance if you can do so without medical screening.
  
• Maximize your tax-deferred savings, especially if it's matched, since you can take it out after leaving on disability without penalty at lower tax rates.
  
• Beware of HMO offerings if they mean losing your choice of physician, especially outside large cities where you might not find a HMO physician who understands HIV well.

Consider enabling yourself to stay at work longer through accommodations requested through the Americans with Disabilities Act (ADA).

• Some companies respond well, offering flextime, home work, extra equipment, and job redesign to minimize travel & stress.
  
• In some cases it's possible to cap off a career with advisory and mentoring roles before taking disability benefits - much as a retiree would do.

But in times of downsizing, remember that employers are trying to cut deadwood - and that may include somewhat disabled wood. Moreover, there have been rulings that cut back from ADA protections for certain professions where long hours and hard working conditions are the essence of the job (e.g., lawyering). The operative word in the ADA is reasonable accommodations.

Legal advice may be prudent on a FMLA leave since many protections depend on size of company, etc. Sometimes a break of several months is all that's needed to get over a flare-up of an illness if you want to keep your job and present income.

Be aware that coming out as a person with a disability may also freeze job possibilities & salary level and start a process of social exclusion and isolation at work. It's a major event for which you could use counseling.

Lastly, there are alternative ways to corporate employment to getting benefits - get them through a spouse. One example is medical insurance through domestic partnership benefits. Check your locality for registration requirements and seek out employers offering them. One extreme possibility: consider a marriage of convenience if it comes with missing spousal health benefits. You may bring to the altar sizeable pension benefits that otherwise would be untouched and lost that a spouse can tap. Such arrangements obviously require a good prenuptual agreement and can complicate estate planning. But they may bring continuous benefits and literally keep assets in the family.

Teamwork Works at Work

Once you've decided disability benefits will help, not hinder, and that you can get them, line up support. Why? Disability ranks as a major transition - one there's no training for. To orchestrate it you may need an advisor very experienced in corporate benefits.

Explore the benefits of short-term psychotherapy or supportive counseling during this stressful transition period - especially if you are considering disability because you either hate work or if you can't tolerate the idea of leaving the job. Disability has a way of surfacing old issues such as self-sufficiency, how much we've lived our lives for others, identifying our self with our job, desperate needs for acceptance, pride, discrimination, closeted selves, workaholism, etc.

Add to your team people who have taken disability benefits. Listen. Learn from their experiences.

Read life change guides such as Transition, by William Bridges, or Seasons of a Man's Life, by Daniel Levinson. To go from the shore of paid work to the land of free work may require some help, as in the ultimate novel about life change, Siddhartha. But realize all materials are written for straights.

Know something the experts don't cover: that disability has drastically different impacts depending on the decade in which it falls: in the 20s it can actually further the exploration of what life offers; in the 30s it can disrupt the urge to build career; in the 40s it can fit right into the re-examination of life imposed by the mid-life crisis; in the 50s it can precipitate a re-examination of what retirement really is.

In the end you may benefit from a team of support, depending on the complexity of your case and the degree to which you thrive with help.

• Your doctor must support your claim and write powerful, supportive statements.
  
• Your social worker should not steer you to public entitlement benefits, urging you to divest your assets, when these middle-class benefits exist.
  
• Your family & friends should understand and encourage this new development in your life.
  
• Your financial advisor should give you an overview and unearth ways to provide income and cover expenses.
  
• Your lawyer should identify glitches beforehand & solve them if they arise.
  
• Your medical expert witness should rebuild your case if it's borderline.

Make lemonaide out of the lemon

As we've discussed, coming out as disabled may rival coming out as gay as a major event. Whereas being gay is a non-issue to most Americans, our society vividly defines people by their jobs - especially in the 90s. Yet just as coming out opens doors, applying for disability can be the first time you work with a true corporate team that supports you totally - including your sexuality.

First, identify & cultivate an ally at work, a protector who can give inside information & advice. Coming out with illness takes the push of courage, support, clear thinking, a host of other skills & strengths - and pull.

For those who have a good relationship with management or who have knowledge or contacts that may continue to be of value, it may be advantageous to develop an announcement plan. Disability is rare in the corporate world. The shock wave of the announcement itself is considerable. A common immediate reaction is "what can we do?"

Tell them. The company can continue salary until long-term disability or social security starts. If they are compassionate, they can continue to pay for medical benefits until Medicare begins. They can choose to give a last-minute raise if that will increase disability benefits. If self-insured, they can permit continued access to other benefits. They can give equipment or extend privileges or perqs. They can pay a monthly "charitable stipend" out of compassion if there are no LTD benefits, if pension benefits cannot be touched, or if they feel strongly protective - or guilty. If this is done, it would probably not negate social security benefits.

Remember, you're disabled now. Use your protector to state your case. Train them to tell the company what they can do for you about AIDS in your very real, concrete case, in ways large and small.

Reworking work

If you thought getting disabled was a full-time job, once you leave the narrow world of paid work, there's a new challenge: discovering a lifework where income and work are totally separate.

Especially if getting disability benefits was a coming out process, disability becomes a new stage of life. Taking care of yourself may be the #1 job. But behind that task is identity re-creation. Use the guaranteed income represented by disability benefits and 100% more private time to re-create yourself.

You'll soon find that notions of earning an income very limited. Consider disability as a lifework change - a transition to a calling where the personal and professional intermingle.

Most paid work is specialized. Lifting the requirement that work produce income explodes the possibilities. To rediscover often-forgotten selves and help reimagine a future, even within short timeframes, is creative work. There's considerable benefit from career changing tools such as computerized inventories of interests, skills, style and experience to reveal who you truly are. Tap into these free through most university career centers.

It's time to reflect, to take down past shelved dreams, passions, and ambitions. Consult a career counselor if they can see disability as a new career phase, where possibilities can be much greater. Consider creating a lifework to move into.

Back to the future

Nearly everyone contemplating disability wants to know if and how to go back to work. It's a great Linus security blanket you need to know is there.

• There is a trial work period benefit in social security where one can work for up to nine months cumulative in any five year period. While earning $200/month can trigger this, up to $500/month can be earned during these months with no explanation. This in fact might be useful to acquire missing medical and life coverage yet keep SSD benefits.
  
• There are usually state grants for retraining & educational programs that will pay tuition.
  
• There's another provision under social security where people on disability can work to put money aside for retraining and equipment for a new business - while receiving benefits.
  
• Residual or part-time disability benefit programs are often available on employer LTD or private insurance.
  
• Volunteering is always welcome. I have a client who's nurturing a decades long project from his old place of work to fruition - but in jeans, when he wants, and the way he chooses. Another has created a foundation to use exercise to help people with cancer.
  
• And remember: none of these benefits are a one-way street to non-work.

No matter what unique way you re-invent work, replace the key functions that work provided. Options should be greatly increased now that income is separate from a lifework. Create new daily, weekly, monthly & seasonal rhythms & regularity. Provide new opportunities for regular social contact & support. Use volunteerism, writing, speaking, activism to express your inner values. It should be evident by now that taking these benefits does not mean having a lot of time on one's hands.

Explore programs & privileges now available. Many discounts & freebies are available especially for transportation and entertainment. This represents genuine economic value.

It should be obvious by now that disability can be a bigger job than most of us ever had. It often requires greater competency than we were ever challenged to bring to a paid job. Unlinking work and pay can be all about taking back control of our lives, making our choices more our own.

Making decisions about disability can be an exercise in freedom. It's taking responsibility for each of our acts, going off autopilot and cruise control, and acknowledging ourselves as unique human beings with limits. The irony is that the limitations of illness can challenge our ability to grow. Disability status can mean graduating to being truly qualified to run your own life.

There may be a parallel with the wise men of India who at retirement abandon a life of possessions and obligations, dispense with society's rules, simplify things, and focus on their true values. They are respected for that there; you can respect yourself for that here.

So, why consider disability benefits? The rudimentary response is because you can't work any more and the benefits will replace income. Yet the ups and downs so characteristic of HIV demonstrate that this alone is hard to determine. Seeing this purely as a job or income decision reveals the short-sightedness of this stock answer.

A better answer? To heal, to revamp, to recoup, to create new basis for life, with less stress, with more meaning, based on self-expression - to make life worth living - to discover, accelerate and catch up on what life's all about.

In some ways HIV has prompted many of us to explore this new territory - birthing many new ideas about work, health, and what's truly of value in life. Society in the 90s itself seems to be moving in this direction, with people disengaging from the consumer path, using part-time employment and job-sharing for greater security and freedom, rebalancing personal & professional interests, using retirement, retreats and time-outs to revitalize.

Disability need not be stepping off into the void as in an Indiana Jones movie. It can be a path into a new land of opportunity, security and sanity where illness is to be lived with and worked around - and no longer denied. Yes, return to work is always possible. But I have yet to have any one I have helped want to go back.