I just finished translating a handbook on disability for employees of one of France's biggest companies. It was a timely project; disability has been on my mind lately because I've recently had a taste of what it's like from the inside looking out.
I made it to 50 without ever having had special needs or health concerns, and I admit I never gave too much thought to disability. Of course I supported programs in various ways, was indignant when cars without placards were parked in handicapped spots and, after I moved to Paris, was dismayed every time I tried to imagine getting around this city in a wheelchair. That's what disability was to me: programs, placards, wheelchairs...
I should have been paying attention.
If I had, I might not have been so thoughtless and ill equipped to help people I care about who became disabled (like my mom, who had a mild stroke years ago that changed her life). And I wouldn't have felt so ashamed when I got an inkling of what some people I know have had to deal with (like my sister-in-law, who had to quit working in her early 40s because of lupus).
To help you avoid the same mistakes, I thought I'd share a little of what I've learned this year. First of all, here's a handy set of definitions from the U.N.:
Impairment: Any loss of normality of psychological or anatomical structure or function.
Disability: Any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.
Handicap: A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfillment of a role that is normal, depending on age, sex, social and cultural factors, for that individual.
Handicap is therefore a function of the relationship between disabled persons and their environment. It occurs when they encounter cultural, physical or social barriers which prevent their access to the various systems of society that are available to other citizens. Thus, handicap is the loss or limitation of opportunities to take part in the life of the community on an equal level with others. Source.
You can be sure that there are many people around you who are disabled or have long-term health problems without your being even remotely aware of it. You'd never know it to look at me, but according to this definition, I have a handicap. I have an immune-system disorder (impairment) that causes me frequent physical discomfort and has reduced my energy and stamina by about 50% (disability), all of which prevents me from engaging in my normal level of personal and professional activity (handicap).
My handicap is very real for the moment but, fortunately for me, my condition could magically go away on its own someday. Maybe even soon! And because what I have isn't life threatening, I've been able -- some days -- to step outside of it enough to experience it as an opportunity for learning and growing.
Acceptance: your own, but especially that of others
My last 10 months can be summed up pretty much like this: denial denial indignation fear anger anger denial anger depression depression medication. It took six months to get a diagnosis and a while for me to grasp the implications of chronic illness, and when I did, boy was I pissed off. Losing even a little physical or mental capability is no fun when it's gradual, but when it happens suddenly, it's extremely hard to accept.
This explains why my mom went around for a year or more after her stroke saying to people "I'm disabled" and "I'm a senior" every chance she got. It was because she was processing the sudden and radical change in her life and trying to get it across to others. For my part, I've been joking around and telling people "I'm officially delicate, like Elizabeth Barrett Browning. I guess I'll have to move to Florence and write sonnets all day." You do what you have to to get used to the whole thing.
But what surprised me most of all was that it can be even harder to get other people used to the idea. For a person with a sudden disability, other people's inability to accept it can be exhausting, frustrating, demoralizing -- even infuriating.
I've told people close to me explicitly and repeatedly, verbally and in writing, what my current limitations are, but some of them still don't seem to hear me. Maybe it's just one of those things you can't understand until you live it. Or maybe it's an unconscious attempt on their part to keep things "normal" for my sake and theirs. Or maybe it's because, as some of my friends and relatives have said to me, I seem fine. They say this with the kindest of intentions, and bless their hearts for it! And in their position, I have done exactly the same thing in the past.
But then -- and this is probably my problem more than theirs -- I feel pressure to live up to their expectations, to not seem sick, to not slow down. So I push myself more than I should. I feel guilty. I feel like I need to act like there's nothing wrong to make them feel more comfortable.
I've concluded that other people's denial is making it harder for me to get to acceptance.
A different kind of reinvention
Not long ago, I came across an enlightening little article on The Atlantic called The Psychology of Bitterness: 10 Essential Lessons. The study on which the article was based concluded that the key factor in avoiding bitterness is being able to let go of goals you can't achieve and embrace new ones you can. Not surprisingly, the article said older people are better able to do this than younger people (it's called life experience).
When you're suddenly disabled, you have to reassess what's possible and be realistic. You may need to give up some goals (anything from "make dinner every day" to "climb Half Dome"). In this case, necessity becomes the mother of reinvention. And adjusting to your new reality is painful and stressful and requires huge amounts of emotional energy.
It's harder to reinvent yourself if your friends and family resist! So if you're close to someone with a sudden disability, try not to make it more difficult for him by refusing to let him break in his new shoes.
No "right" way to act
You're never prepared for disability. We do our best when friends and loved ones become disabled or have a long-term illness. We make mistakes, but they know we can only guess at what they're going through. As in every other circumstance, communication is essential and so is common sense.
I'm not an expert! But now that I've been on both sides of this experience, my common sense advice is this: be available, but don't push (unless you think your friend's well-being is in jeopardy). At the same time, don't be distant; a little e-mail or cupcake delivery (but never unannounced) every now and then will tell your friend you're there and you still love him. Most of all listen and let yourself be guided by your friend.
If someone you care for is suddenly diminished, even temporarily, I suggest you do a little research about how to handle it both for your own benefit and that of your loved one. You could start with You Look Great and Other Lies, a touching and practical article written by a cancer survivor about what to say (and not to say) to someone who's sick.
If you have advice, insights, or resources to share, I hope you'll do so! The more we talk about this, the better.