the 1980s, managing to do so from not-cultural-mecca Minneapolis and while wearing a pirate shirt with a bandmate dressed in surgical scrubs; but he also had the determination to do things his way, regardless of how or whether the public responded. Given that he was a tiny, bare-chested “not a woman, not a man” with a quasi–Jheri curl, that response could have been cruel indeed.
So if you’ve ever been tormented by self-doubt and wished you could be better looking, taller, or less inclined toward platform shoes so you could believe in yourself more and maybe accomplish something, look to Prince, and trust that you too can be a massive weirdo and stay true to your vision and mission without having to forgo your dreams of acceptance.
Overcoming the Stigma of Disability
Given the way we equate poor performance, damage, and abnormality with low self-esteem, it’s not surprising that the goal of people with disabilities, be they physical or mental, is to gain confidence by reducing their disabilities, keeping them hidden, and reclaiming normality as soon as possible. Sometimes, they seek out special challenges—some positive, like running a marathon, others less positive, like running away from treatment they’re sure they no longer need—to prove that they have the strength to overcome all obstacles and get their confidence back.
What’s dangerous, however, about taking too much responsibility for controlling a disability is that disabilities usually come with an even-higher-than-normal vulnerability to unforeseen shit, and thus prevent the less able from ever having full control. As a result, if your self-esteem depends on the state of your recovery, you will waste energy fearing and then feeling personally responsible for slips, setbacks, and relapses that even the most capable person doesn’t have a handle on.
You may stop treatment that might otherwise help, or hide symptoms in order to keep up appearances at home or at work. The state of your illness will dictate your self-esteem, which means you will become your illness, rather than a person who happens to have a disability. You won’t be someone living with a disability, but someone whose disability is their life.
Instead, accept what you’ve already learned: that your disability will come and go and you’ll never control it completely. Educate yourself about it, become an expert manager, and use treatment whenever you think it’s necessary and without regard to your yearnings to be normal. Fight the shame that comes with being ill by sharing as much with others as you think is appropriate according to your own standards of privacy, not the culture’s stigma.
Since you can’t rid yourself of your disability, fight to manage it so that it affects your life as little as possible. Don’t take pride in looking normal, but in how well you cope with abnormality, tolerate the burden of your illness, and get as much as you can out of life. Living with a disability is in itself a marathon, not a sprint, so take pride in the small accomplishments that make up your every day.
Here are signs that your disability is getting the better of you:
• No one knows you have it, and if you can help it, no one will
• You’re afraid of what will happen if it gets worse and you’re not prepared
• You can’t imagine feeling good if you don’t look and act normal
• You can’t imagine telling anyone about your disability unless you’re very sure of their support
Among the wishes people express when they feel stigmatized by disability:
• To be in control and look normal
• To not rely on medication and never go in the hospital again
• To avoid losing control
• To maintain performance in all areas of their lives
• To find treatment that will give them the above
Here are three examples:
I don’t want to tell anyone at work that the doctors think I’m bipolar because it would freak them out. I’m not even sure lithium is necessary anymore, because it’s been a long time since I was sick, and I know that people would think I was crazy if they knew I was on it. I’m not sure I know what bipolar means and I know the diagnosis spooks people. My goal is to keep quiet about the illness, gradually get off meds, and see if I can be normal.
I feel embarrassed going out after work and always being the designated driver who never drinks. They know I’m sober because I believe I’m an alcoholic and sometimes they make sly jokes about it. I’ve been sober for three years, I don’t feel like drinking, but I know I’d feel a lot more confident if I had an occasional drink. My goal is to get my confidence back and try to be a normal person instead of an alcoholic.
I look pretty well put together and I’m attractive, so I get asked out a lot, but I can never feel comfortable with guys. I was abused by my uncle, and it’s left me with tons of anxiety about guys and sex. I’m ashamed to talk about it because it makes me cry and I feel like a head case. My goal is to straighten myself out so I can date and have sex and lead a normal life.
Of the many twelve-step aphorisms we like to borrow in this book, “you’re only as sick as your secrets” seems most apt in this instance, or maybe something more like “you’re only as handicapped as your hidden issues.”
It’s human nature to want to hide your disabilities so you can protect your confidence, pretend you can count on steady performance, and prevent others from knowing or exploiting your weaknesses. Playing pretend, while fun for children and kinky adults, is usually self-destructive in everyday life.
Since hiding or undertreating a disability usually makes it worse, your job is to accept it, regardless of embarrassment or self-disappointment. That’s the only way to become realistic at assessing its impact on your life, one day at a time, and become expert at managing it. Learn when you need extra rest and when to tolerate the risks of treatment, then educate your boss and family about your problem so that they know how to help and understand your periods of relative dysfunction.
It’s true, some people may not accept your disability—especially if you don’t—and thus hold you responsible for underperforming; they’re the ones who will believe you’re lazy, exaggerating, or bothered by mental issues (and they don’t mean illness). As much as their opinion may matter to you, don’t waste time and energy hiding from their scrutiny or trying to change their opinion. Stand by what you’ve learned from your own experience, which is that your disability is real, you’re doing your best with it, and you don’t want to argue or spend too much time with anyone who doesn’t agree. The people who matter can forget about your handicap, and the people who don’t can go fuck themselves.
Yes, you may have to find another job or limit the acceptable topics you can discuss with a family member. The alternative, however, is worse, which is that you’re constantly hiding, explaining, and apologizing, all of which interferes with your ability to manage disability and respect yourself.
People can’t respect you for how you are managing your disability or help you deal with it until they know what it is, so if you don’t tell them, they’ll wonder what they’re doing wrong or why they can’t help you, and your fear and shame will infect them. Letting them know what’s wrong is never a confession; it’s a proud statement of achievement and intention, and if they care about you, they’ll have your back.
As usual, the
